Assessment of the Needs and Services to Individuals with Neurodevelopmental Disabilities

ASSESSMENT OF THE NEEDS AND SERVICES TO INDIVIDUALS WITH NEURODEVELOPMENTAL DISABILITIES

Howard A. Frank, Ph.D. Maria Ilcheva, Ph.D. Matthew Walker, M.A. Dulce Boza, M.A.

EXECUTIVE SUMMARY The FIU Metropolitan Center, in collaboration with FIU-BRIDGE, developed a comprehensive study on the services provided to adult individuals with autism and developmental disabilities in Miami-Dade County. The assessment defines the current state of service delivery and identifies any service gaps. The gap analysis is performed through a detailed overview of models from other jurisdictions, interviews with experts and practitioners, as well as caregivers to people with these disabilities.

SYSTEM OVERVIEW The literature review on the successful transition to adult-based medical care reveals that services to individuals with intellectual and developmental disabilities (IDD) will need to account for the six disability categories--independent living, the evolution of personal financial responsibility, arranging independent transportation, developing a sexual identity, and establishing intimate and social relationships. Findings to date, including literature review, surveys, and interviews, reveal remarkably fragmented service delivery to clients along the IDD spectrum. Except for the vocational rehabilitation component, clients are not afforded a uniform intake and evaluation of status that simultaneously aligns mental and physical conditions with quality of life considerations. The absence of a “system integrator” precludes caregivers and service providers from maximizing scarce medical, housing, and social services.

Based on the themes derived from the scientific peer-reviewed literature, the research team developed a series of gap analysis matrices to account for needs and severity levels across six disability categories served by the Agency for Persons with Disabilities (Miami-Dade County, Florida): intellectual disability, autism spectrum disorder, cerebral palsy, spina bifida, Down syndrome, and Prader-Willi syndrome.

Due to the complexity of the six neurodevelopmental disabilities investigated, each condition was further specified by condition severity and type (except for Down syndrome). Some of the conditions require individual assessments within each to determine the severity of the need.

Adult-focused medical care is a universal need for participants diagnosed with all six conditions. The significance of lifespan care and the transition from adolescence to adulthood is reiterated again and again across and within the reviewed literatures. The successful transition to adult-based medical care will need to account for the six disability categories--independent living, the evolution of personal financial responsibility, arranging independent transportation, developing a sexual identity, and establishing intimate and social relationships1. Sexual health education is a universal need among the six conditions because individuals with developmental disabilities can easily be taken advantage of and are considered a vulnerable population2 . In addition, socialization opportunities are strongly needed for five out of the six conditions. Rehabilitation professionals must work toward addressing the many and varied unmet needs in comprehensive lifespan care services for adult individuals with neurodevelopmental disorders.

On the medical front, a gap exists in clinical training. Few practitioners blend expertise in internal medicine and psychiatry—the specialties most appropriate for this clientele. Medical reimbursement 1

Diana Wiegerink et al., "Sexuality of young adults with cerebral palsy: experienced limitations and needs."

Sexuality and disability 29, no. 2 (2011): 119-128.

2

Shelley Lynn Watson et al., "Sex and genes, part 1: Sexuality and Down, Prader–Willi, and Williams syndromes."

Intellectual and developmental disabilities 50, no. 2 (2012): 155-168.

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exacerbates this shortcoming and leads to continued over-reliance on pediatricians by adults along this continuum.

The institutional model with large numbers of clients in one sitting has passed from the scene under the assumption that “choice” is the preferred design principle. Nonetheless, the focus on “choice” does not necessarily account for social, economic, familial, and transportation restraints within a broader political economy.

Survey research shows that the preferred housing option for most individuals with disabilities is singlefamily homes but that preference may not be optimal from an economic and social perspective. Living at home may be the most cost-effective model. However, it may stunt social development which may, in turn, limit integration. In addition, as caregivers age, clients will have few, if any, options to care for themselves. Thus, aging adds a second cliff in clients’ life trajectory; the first being legal transition to adulthood and the second being incapacitation of caregivers as they enter senior status.

Miami-Dade presents additional service delivery challenges. Florida’s fiscal conservatism results in constrained resources available to IDD clients and their caregivers. Miami-Dade’s relatively low wages and high cost-of-living (particularly housing) exacerbate public funding adequacy. Public-private partnerships might alleviate service shortcomings but are targeted to more affluent, higher-functioning clients.

HOUSING MODELS A principal area of interest was identifying potential options for IDD clients nationwide while investigating Miami-Dade’s public housing options. The ongoing debate about “choice” and our research suggest there is no “best practice” in this arena. However, there are emerging models designed to accommodate the growing proportion of IDD clients leaving caregiver support.

These models are placed along the “integration-congregation continuum” based on the difference between group-oriented and individualized settings. The most important distinction between these two settings is in size, with most integrated models having resident totals capped at four and congregation averaging a few dozen. Thus, integration is an individual or independence driven approach, with no more than four IDD adults living together and normally located within a standard American neighborhood. The intent is for individuals to choose where and how to live, with access to all civic or social institutions, as well as neurotypical 3 experiences and options readily available to residents. In contrast, congregation includes residential settings ranging in size from single to multi-structure communities with on-site affiliate amenities. These models reject the assertion of their housing being institutional living, and instead frame themselves as intentional or planned communities. Moreover, congregate communities also tend to provide higher levels of support and care than small integrated housing, as well as opportunities such as employment and social activities. Adherents to the integration and congregation models argue that they are simply supporting the individual’s choice, with the integration camp arguing for a setting that reflects neurotypical environs and the congregation camp developing a separate community entirely.

There is consensus that these approaches provide medical and social structures that foster “choice” and social integration for the growing proportion of IDD clients leaving the home settings with their 3

For the purposes of this report, ‘neurotypical’ connotes individuals who do not have a diagnosis on the ASD spectrum.

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caregivers. However, these approaches are more costly than stay-at-home alternatives and current medical reimbursement models (particularly Medicaid and traditional public housing programs) deter affordable housing innovations. Only 24% of the Florida IDD community are currently living outside of a family member’s home.

PUBLIC HOUSING IN MIAMI-DADE Miami-Dade County’s Department of Public Housing and Community Development (PHCD) has been tasked with managing and developing public housing in the area, as well as the administration of housing choice vouchers (Section 8 funds). The high demand for public housing and housing vouchers, which exceeds the limited resources available to PHCD, has created long waiting periods for waiting lists, closed since 2014, precluding new applicants. The 2014 list includes over 28,000 applicants. PHCD is managing almost 9,200 units of public housing in 100 family and elderly developments. PHCD also manages several mixed-income housing developments charging rent to low-income families that can afford to bear some of the costs of housing.

Per HUD regulations, public housing agencies may establish local preferences for selecting applicants from its waiting list. None of the lists indicate preferences or priority given to individuals with disabilities. The PHCD follows the Americans with Disabilities Act (ADA) guidelines which protect three categories of individuals with disabilities: 1) Individuals who have a physical or mental impairment that substantially limits one or more major life activities, 2) Individuals who have a record of a physical or mental impairment that substantially limited one or more of the individual's major life activities, and 3) Individuals who are regarded as having such an impairment, whether they have the impairment or not.

The review of the PHCD 5 Year Plan for Fiscal Years (2015-2020): Annual Plan for Fiscal Year (FY) 20162017 shows little specific focus on individuals with developmental disabilities. When disability accommodations are mentioned, there is no differentiation between physical and developmental needs.

HOUSING ASSISTANCE THROUGH NON-PUBLIC AGENCIES The high demand for housing assistance coupled with scarcity of resources available to public housing agencies, has placed a burden on the nonprofit and for-profit sectors to address many of the unmet needs. However, the nonprofit sector, however well intentioned, does not have the resources to provide comprehensive solutions to address the housing and other needs of IDD individuals. Some of the incremental solutions are a good indicator of the areas in which the most significant service shortages exist. Some examples of non-public agencies working towards expanded services to individuals with disabilities include:  Independent Living Advocates at the Center for Independent Living of South Florida assist in developing an Independent Living Plan. The plan includes housing, transportation, medical services, accessibility, assistive technology, employment, education, benefits and resources, recreation, social needs as well as any other topics that are important factors on the path to independent living. The broad goal of the Center is to “assist individuals with disabilities who reside in institutional settings to regain their independence within the community.” 4

4

Center for Independent Living of South Florida, Community Transitions¸ https://www.cilsf.org/communitytransitions/ (accessed July 7, 2017).

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 The WOW Center assists individuals with disabilities to “explore their potential, develop a sense of community and pursue independence and jobs if able,” and offers vocational training, job coaching and placement. Some of the skills they aim to develop include interpersonal and leadership skills, problem solving, vocational and social skills and employability. 5  SCLAD (Spinal Cord Living-Assistance Development, Inc.) housing initiatives aimed to create barrier-free and affordable housing for individuals with disabilities and their families. SCLAD is a Community Housing Development Organization, certified by the City of Hialeah, Miami-Dade County and the Florida Housing Finance Corporation. As of January 2014, SCLAD had developed 76 barrier-free units, sold twenty-four condominiums and was actively managing fifty-two rental units.6  Carrfour Supportive Housing focuses on the development, operation and management of “… housing communities for individuals and families in need through a unique approach combining affordable housing with comprehensive, on-site supportive services.” 7 One of their projects, Rivermont House, located at 789 NW 13th Avenue in Miami, consists of 76 affordable housing units for former homeless individuals including 36 units serving disabled persons and 15 units serving elderly residents. The community also enjoys the “amenities include a computer lab, fitness center, library, pool table room and outdoor courtyard.” 8 THE CAREGIVER PERSPECTIVE The presence of IDD individuals in the household poses significant challenges to the family as whole. The research team collected survey data from caregivers of IDD individuals in Miami-Dade County to assess various quality of life issues of families with IDD individuals. Survey results confirm the findings reported in other studies. Most caregivers (59%) reported their family covers more than half of the disabled individual’s expenses. A small majority (56%) indicated that the ideal arrangement for their dependent as an adult would be their current living situation. The other responses regarding ideal living arrangements were dispersed across several other options including apartment or house that s/he owns (11%), apartment of community that includes only individuals with disabilities (8%), another family member’s home (6%) and other arrangements. Only two percent chose “where my dependent chooses” as an answer. The most frequently mentioned challenges of caregiving included: “Understanding government programs such as Medicare or Social Security”, “Having someone to talk to that understands what I deal with”, and “Finding trained and reliable homecare providers”.

Medical care appears to be of concern for a smaller percentage of respondents than other challenges such as housing, transportation and education. Only 56.5% of respondents believe their dependent has adequate educational opportunities and only 40% feel they have enough information to make good choices about housing options for their dependent. Approximately a third (34.3%) do not have a support plan in place for their dependent if they are unable to provide care. Even more significantly, 69.7% 5

6 7 8

The WOW Center, Empowering Individuals with Disabilities, http://wowcentermiami.org/ (accessed July 7, 2017).

SCLAD, http://www.sclad.org/causes/housing-2/ Carrfour Supportive Housing, http://carrfour.org/# (accessed July, 7, 2017).

Carrfour Supportive housing, Communities, http://carrfour.org/communities/page/3/ (accessed July 7, 2017).

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indicated they need help navigating services to understand the different systems, paperwork and deadlines.

OTHER CHALLENGES Any discussion regarding choice and independence is inextricably linked to economic self-reliance, which, for most individuals with disabilities, means access to educational and employment opportunities.

The most current data from the Bureau of Labor Statistics indicates that in 2016, 17.9 percent of persons with a disability were employed. 9 The data also shows that:  Unemployment rates were higher for persons with a disability than for those with no disability among all educational attainment groups;  In 2016, 34 percent of workers with a disability were employed part-time, compared with 18 percent for those with no disability; and  Workers with a disability were more likely to be self-employed than those with no disability.

SUMMARY Preliminary findings suggest medical care and housing for those along the IDD spectrum in Miami-Dade may be less challenging when viewed through the prism of caregivers. However, alternatives to stay-athome housing may be unknown or too costly to consider. Review of best practices and interviews with experts paint a different picture. Medical care provision through Medicaid is fragmented and remains anchored to pediatricians well into adulthood. Housing alternatives in Miami-Dade that may relieve caregiver burden while maximizing client choice and individual growth, remain limited. Perhaps most importantly, provision of housing and medical services to IDD clients must be tailored to meet the caregiver's social ecology relative to transit availability, financial capacity, and health status. Navigating this ecology without a "systems integrator" is likely to result in less-than-optimal health and housing status for clients. Miami-Dade's high cost of living, coupled with limited labor force attachment for most IDD clients, augur for adaptive reforms undertaken elsewhere.

Our conclusion points to the difficult fiscal realities faced at the federal and state level and their constraining impact on IDD policy initiatives. Policy initiatives that incentivize private and nonprofit housing initiatives, as well as policies that induce medical professionals to practice in the emerging IDD sub-specialization, should be considered. Many states are moving away from fee-for-service medical provision to high-cost consumers such as the elderly and disabled. Private insurers may provide important data and experience in designing pathways to cost-effective medical provision to the growing IDD population.

9

Bureau of Labor Statistics, June 21, 2017. Economic News Release: Persons with a Disability: Labor Force Characteristics Summary, 2016. https://www.bls.gov/news.release/disabl.nr0.htm

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TABLE OF CONTENTS

EXECUTIVE SUMMARY......................................................................................................................I STUDY SCOPE AND METHODOLOGY...............................................................................................1 EXPERT INTERVIEW ANALYSIS.........................................................................................................2 CAREGIVER SURVEY RESULTS........................................................................................................10 HOUSING OPTIONS FOR INDIVIDUALS WITH DEVELOPMENTAL DISABILITIES.............................15 HOUSING FOR INDIVIDUALS WITH DEVELOPMENTAL DISABILITIES IN MIAMI-DADE..................28 SERVICES TO INDIVIDUALS WITH NEURODEVELOPMENTAL DISORDERS.....................................64

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STUDY SCOPE AND METHODOLOGY The first task in the research includes a comprehensive review of existing research relevant to the needs of people with developmental disabilities and their families. This research provides the baseline for constructing a preliminary needs-based assessment. Task Two involves the administration of interviews with experts and practitioners in the area of service delivery to disabled persons. The focus of task three is the collection of data from caregivers. It was supplemented by research conducted in tasks four and five which include the analysis of “best practices” or service models for individuals with disabilities, with a focus on housing options to people with disabilities. The project team also reviewed Miami-Dade’s Housing Plan for people with disabilities to gauge the current array of available housing. The housing research combined with the findings from other tasks provides an assessment of any potential gaps in housing options and to determine if any additional housing should be considered. This housing research considers both the housing currently needed by people with disabilities, as well as in the future, when they may not be able to rely on their family as caregivers.

The asset mapping task includes a scan of services available to individuals with disabilities in MiamiDade County. For benchmarking purposes, the research team also reviewed Florida counties of similar size (Broward, Palm Beach, Hillsborough, Orange, and Pinellas) and the array of services to individuals with disabilities provided in them, both by the county as well as by other nonprofit organizations. The comparison shows differences that may point to the need for enhancing services in the Miami-Dade area. The asset mapping includes service providers as well as advocacy groups focused on enhancing the quality of life of those affected individuals and their families.

The gap analysis examination investigated the peer-reviewed literature to indicate and assess the common needs for individuals with intellectual and developmental disabilities. Current models of service delivery, the efficacy of these services, and remaining gaps in the need fulfillment of individuals within the six diagnostic categorizations of interest were examined. Severity level within each diagnostic category was plotted on a matrix according to whether the needs of individuals were minimal, moderate, severe, or universal. The study found that sexual health education, socialization, and adultfocused medical care are universal needs among the six conditions. The study also indicated that rehabilitation professionals must work toward addressing the many unmet needs in comprehensive life span care services for adult individuals with neurodevelopmental disorders.

The final research analysis reviewed existing international and domestic programs in order to identify model programs. Current models were examined based on criteria of target population, needs addressed, and the quality of care provided which is demonstrated by reputable accreditations and certifications. Based on the categories identified in the gap analysis, we identified programs that served populations living with intellectual disability (ID), autism spectrum disorder (ASD), cerebral palsy (CP), spina bifida (SB), and/or Down syndrome (DS). The need domains included: supervision, transportation, housing, communication, finances/employment opportunities, activities of daily living/instrumental activities of daily living training, socialization opportunities, enhanced adult-centered medical care, psychological, medical equipment, and sexual health education. Inclusion within our analysis required at least five of the eleven identified needs to be met. Ten such programs demonstrated the required criteria to be considered a comprehensive model or notable program.

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EXPERT INTERVIEW ANALYSIS The Metropolitan Center researchers conducted interviews with ten (10) stakeholders with expert knowledge of the conditions, challenges, and opportunities facing adults with disabilities. The interviews were conducted over a two-week period in July and August 2016 and had an average duration of 1.5 hours. The interview schedule was comprised of open-ended questions which covered a broad expanse of issues relevant to individuals with disabilities. The purpose of the interviews was to discuss the needs of individuals with disabilities, services that are currently available to them, and the challenges to better quality of life. The discussions specifically focused on the transition between services and agencies which provide services to individuals with disabilities as they transition from childhood to adulthood.

The analysis below summarizes the findings and categorizing them into groups of issues encountered in the transition from child to adult services for neurodevelopmental disorders.

Navigating the ‘Cliff’ One of the most important periods in the life of those with neurological developmental disabilities and their families is the transitionary period between childhood and adulthood. Without coordinated planning from caregivers and service providers, this period can become a service ‘cliff’ as a result of the unanticipated change in available services and resources to individuals with neurodevelopmental disabilities including: autism spectrum disorder (ASD), cerebral palsy (CP), Down syndrome (DS), intellectual disability (ID), Prader Willi syndrome (PWS), and spina bifida (SB). The cliff results from a confluence of social, public sector, and private sector factors; and can be compounded by the lack of awareness and preparation by the individual’s family and support system. Although most services in the pre-adult years are provided through the school system, preparation for the transition to adulthood is typically led by the caregiver and is dependent upon when the child graduates. While identifying a child’s graduation date is clear-cut—children can stay in Florida schools up to the age of 22—the definition of adulthood is difficult regardless of disability.

Under Florida Statute § 1.01(13), Floridians are considered minors up until they turn 18 years of age.

Correspondingly, those that are age 18 and above are considered adults, or the age of majority, by state law. The Florida Bar lists some of the rights of adulthood as, “the right to vote (§ 97.041, Fla. Stat.), to make contracts, to sue on your own behalf, to make a will (§ 732.501, Fla. Stat.), to get medical treatment without your parent’s consent (§ 743.064, Fla. Stat.), and to live independently from your parent’s control (Chapter 985, Fla. Stat.)”.10 Yet, the legal definitions of adulthood do not describe the expectations of mental and physical experience, nor the quality of life for those with neurodevelopmental disabilities. However, it is the legal definition of adulthood that creates the cliff in which children no longer receive the quality of care and services individuals with disabilities require well past the age of 18.

To prepare for this transition, parents and care providers in the child’s school system must begin planning for the decline of state supported services while the child is still attending school. While a child is still in school, they have access to individually catered therapies and behavioral services, personalized development plans, and day-long supervision and education. This care suddenly ends once the child graduates (or at 26, under the Affordable Care Act, if receiving specialized care through a parent’s 10

Florida Bar: https://www.floridabar.org/wp-content/uploads/2017/04/ada-just-adulting-legal-survivalguide.pdf

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private insurance), and even the most well-prepared families will likely feel the impact of this change. As one interviewee suggested, the lack of adequate preparation for this transition leads to the loss of gains that were obtained from school through interaction, treatment, and overall care provision.

Another significant factor in this cliff is the medical care that a child receives as a minor through a statebased insurance or as a dependent on their parent’s insurance. Since most children with disabilities will end up on a Medicaid state plan, they lose access to many therapies and care provided for minors, as well as the potentially dramatic event of losing the longtime relationship with a pediatrician or primary care doctor that knows their specific condition, symptoms, and individual behaviors.

Adequately addressing the deficiencies in services for Florida’s disabled community requires the examination of currently available resources and services, understanding those that are needed, and ensuring that they meet the individual’s expectations and experiences for quality of life. Given the individual characteristics of any neurological diagnoses, any approach to help children transitioning into adulthood will be inherently personalized. Despite this challenge, there are a series of universal aspects in the course ahead. The interviews with experienced professionals that provide services to individuals with neurodevelopmental disorders, informed the following categorization of the needs present in this community transitioning to adulthood. The experts also provided commentary on the state of current provision of services.

Transportation

The System Problem

Housing

Physical and Mental WellBeing

Fragmented Medical Service Delivery

Social Engagement

Quality of Life Factors

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Economic Opportunity

Legal and Financial

Quality of Life Issues for Individuals with Neurodevelopmental Disorders

Awareness Awareness is the first hurdle in addressing adult disability needs, with a special emphasis on the adult’s family and caretakers. Throughout our interviews, there was a consistent framing of parents not being prepared for the sudden change in services for their child, the infantilization of their adult child, and the need to address difficult topics like guardianship, employment, and housing. An early objective for transition is to identify the child’s needs and goals. Before their child leaves school, parents need to consider how their child’s insurance will ultimately change, what the child will be doing during weekdays (whether college, vocational training, employment, or supervised care), and what the long-term plans are for the child.11 One particularly difficult issue discussed in interviews was the need for parents to prepare for a future without them, by legally preparing a guardianship for their child. Without accounting for as many post-high school concerns as possible, the children and the family will become burdened by foreseeable financial and social costs that will impact quality of life for both parties.

The interviewees also pointed to the need for greater awareness in society at large about both the needs and the abilities of individuals with disabilities. As some interviewees pointed out, some disabled individuals can hold employment and many even have unique talents that are highly valued by employers. The lack of understanding of these talents and the lack of awareness on how to accommodate individuals with disabilities in the workplace and to make them productive employees is an important impediment to their development, economic opportunity, and independence.

Housing An issue highlighted by interview participants was the inadequacy of housing for adults in the disabled community. Like many services, housing assistance is targeted towards those with physical rather than mental disabilities, with alterations made to construction rather than alternative models of living. The interviews revealed various options and views on the model of housing best suited for those with neurodevelopmental disabilities. These views consider the individualistic nature of the disorder, the choice of the individuals affected, and the degree of supervision or assistance required. Such models, with varying degrees of supervision, included group homes, dormitories, efficiencies, or complexes with caregivers living nearby. External factors that affect these potential housing models involve government assistance that may force unnecessary and expensive conditions, a private sector that is disincentivized by market pressures, and public sector regulations that impede innovation in models. Housing models need to incorporate individual needs and preferences, while enabling people to achieve a qual ity of life beyond their parent’s guardianship. Several interviewees mentioned that many individuals with disabilities should have the opportunity to make informed choices about their living situation but there is lack of such choices, either because of financial constraints, or because the market limits the development of residences that accommodate individuals with neurodevelopmental disorders. In Olmstead v. L.C., the United States Supreme Court held that individuals with mental disabilities are 11

Autism Speaks offers a Transition Tool Kit which outlines the challenges for individuals with autism as they transition to adulthood. The toolkit can be found at Autism Speaks, “Transition Kit: For Families on the Journey from Adolescence to Adulthood,” 2015.

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entitled to live in the community, whenever appropriate, and to receive treatment there, rather than in institutions.12 However, individuals with neurodevelopmental disorders who require medium to high supervision, and lack a family caregiver, may have no other options but to live in a group home, under state supervision.

An ever-present difficulty facing the aging population is the ongoing shortage of affordable housing in Miami-Dade County. In addition to existing housing market pressures, the lack of adequate housing for the community steams from the lack of awareness in the population’s market demand and physical needs. The related industries may need education and sensitization to the population’s limited earnings capacity and the growing segment of the population’s need for housing (ex: ASD’s growth in diagnosis to 1 in 68 who will need future housing). The Miami-Dade Public Housing and Community Development Department (PHCD) has received state funding through the Florida Housing Finance Corporation (the Corporation) to develop housing units for developmentally disabled individuals in partnership with United Cerebral Palsy of Miami. As the interviewees mentioned, funding is both competitive and insufficient to develop an adequate number of units.

Quality of housing and its location are linked to other factors like social engagement, employability, and support/supervision of family member or caregivers. One interviewee noted that developers should consider creating complexes that integrate these needs, providing units where a child with ASD could live independently, while having corresponding units elsewhere for aging parents.

Economic Opportunity Leaving high school often means losing valuable social services as well as a chance to interact with peers, and many of these young adults struggle to find jobs. Ensuring economic opportunity for adults in the community with employability relies on a variety of factors. Such interceding factors include: transportation, education, training, work environment, and support system. The employability of adults with neurodevelopmental diagnoses was subject to vastly different opinions throughout the interviews, with many basing their perceptions upon the level of support the adult would need. Accurately knowing the employability, and subsequent labor force participation rate, is difficult to ascertain.

The first potential impediment to employment is the individual’s family or caregiver(s). According to several interviewees, sometimes the family tends to “infantilize” the disabled, and hold them back from socialization, education, and employment because they do not see such pursuits as “realistic goals.”

Public services are available for aiding those in search of employment. Such efforts are led by the Florida Division of Vocational Rehabilitation (VR), which is housed within the Florida Department of Education.

According to their mandate, VR is a federal-state program that “helps people who have physical or mental disabilities get or keep a job.” 13 VR attempts to employ a comprehensive approach to employment by providing guidance and support in multiple aspects of employability, including education and vocational training, house remodeling, and medical or psychological treatment. While VR appears holistic by focusing on multiple factors that may affect employability, it is job-specific and once that is achieved, the case is closed. Both the public and private sectors have created resource networks for employers to accommodate employees with disabilities; yet ‘job carving’, an aspect of customization 12 13

11

Olmstead v. L. C. 527 U.S. 581 (1999).

Division of Vocational Rehabilitation, Florida http://www.rehabworks.org/ (accessed July 7, 2017).

Division

of

Vocational

Rehabilitation,

rather than accommodation, was referenced by advocates as an alternative, better way to ensure adequate employment that focuses on the individuals’ skills rather than limitations. More generally, there are no proactive recruitment and education strategies for employers to create greater economic opportunity for the disabled community. According to some interviewees, employers need to be educated on the opportunities for hiring individuals with disabilities and the benefits associated with their skill utilization, not only as a community service endeavor but also as value-added to the organization. According to some interviewees, individuals with disabilities should have access to supported or customized employment, and some employers would be willing to offer it if they had sufficient information on how it can be done. Some interview participants mentioned the growing awareness in the private sector of the potential for disabled individuals to become employed. This, in turn, has expanded access to job accommodations and carving, as well as expanded awareness of possible skill sets and sectors that they may specialize in. Professional networks of private firms have developed towards this end.

Some of the interviewees pointed out that individuals with disabilities sometimes create their own economic opportunities through entrepreneurship. Either the individual with a disability or their family members create a business that allows them to use their talents in a productive way and gain independence. Assistance with self-employment, including business plan development and training on small business operations and marketing, is one of the services provided by the Division of Vocational Rehabilitation.

Legal-Financial The complex nature of the existing network of state services limit many caregivers in accessing adequate resources for their adult children with disabilities. Moreover, many may not even understand the entitlements or responsibilities associated with legal definitions of adulthood and guardianship. To overcome the fragmented service delivery by the government, some interview participants reported observing caregivers ceding guardianship to the state, even if financially capable, to take advantage of Medicaid waiver eligibility. Financially, Florida is one of the lowest spenders on community long-term care for the disabled.14 The University of Colorado reported Florida spending $1.67 per $1,000 of average personal income on community programs for disabled persons, paltry compared to the highest’s, New York, at $9.51.15 There are a multitude of factors to consider for families and caregivers when planning and preparing for their dependent’s adult life. Caregivers may not recognize the long-term impact of codependence, or may not be fully prepared for their own death. Both incidence that can leave a dependent adult even more vulnerable. Depending upon the individual’s needs of care and supervision, the family may not be able to provide adequate care as the individual grows older. The lack of planning for legal and practical consequences of caregiver illness or death was noted by multiple interviewees in different contexts.

Guardianship, which is a legal proceeding whereby a court appoints someone to make decisions for a person who is cognitively impaired and cannot manage his or her affairs, can be one solution to this problem 14

15

Carol Marbin Miller and Alex Harris, “3 Courts Slap Florida for Refusing to Aid Disabled People,” Miami Herald, September 3, 2016, http://www.miamiherald.com/news/local/community/miami-dade/article99839242.html (accessed July 7, 2017).

Ibid.

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From a medical perspective, unless the caregivers take steps to establish guardianship over their adult dependents, they cannot be present during medical exams and treatment. Unless proper guardianship is established, once the individual with a disability reaches adulthood, they can legally make decisions and provide consent on their own, not only medical but also others, such as vocational rehabilitation, education, etc. However, if parent is appointed as a guardian, they will have authority over the personal care of their adult child. This will enable them to decide such things as where their child will live, if and where they will work, and what medical care their child will receive. The parent may also be granted additional rights if the individual is unable to manage personal property or financial obligations.

The two main impediments to establishing guardianship include costs and awareness. The parents of individuals with disabilities may assume that they can continue to be their adult child's legal guardian during the child's entire life. Although it may seem obvious to a parent that their child lacks the capacity to make informed decisions, legally an adult is presumed competent unless otherwise determined to be incompetent after a competency proceeding. Once an individual reaches the age of 18, the parent is no longer the individual's legal guardian. Even if the parents are aware of the guardianship process, the cost for establishing guardianship may be overwhelming as it can go into the thousands.

Transportation Daily travel for the neurodevelopmental disabled community varies widely, ranging from ready access to public or private transportation to being housebound or reliant upon family. The need for transportation is highly dependent upon the individual’s employment status, education or training enrollment, weekday programs and supervision, or civic involvement. Beyond traditional public transportation such as bus and rail, Miami-Dade offers Special Transportation Service (STS) to improve mobility for disabled individuals. Regulated under the Americans with Disabilities Act (ADA) of 1990, which allows charges to be up to double that of standard public transportation, STS can be a tedious and expensive option for many users. Riders must have their disability certified for usage of STS, schedule rides 1-7 days in advance, and pay $3.50 per one-way trip (the standard transit fare in Miami-Dade is $2.25). Moreover, door-to-door transit like STS must be considered in a broader understanding of support. Transportation is an example of the interdependence of support and quality of life; transportation has little significance for an individual if their caregiver is unable to bathe, feed, or clothe them. The resulting paradox is that transportation does not guarantee access or utilization of more services and resources.

Medical Service Delivery A major challenge to those with disabilities and their caregivers is the interruption of medical services.

Adolescents who age out of pediatric healthcare services leave behind the doctors they have come to know and trust, and who have become familiar with the needs and behaviors of their patients. The medical service delivery resources needed for the disabled community have significant gaps, with the transition to adulthood being just the beginning of the complexities. The interviewees highlighted such industry shortcomings as the lack of neurodevelopmental specialization in adult primary care doctors, and the absence of cross-training between providers working with the disabled community, especially regarding internal medicine. Compounding the nature of the medical industry’s training and understanding of treating those with neurodevelopmental disabilities, is the limited number of providers willing to care for individuals with Medicaid due to low reimbursement rates. According to one

13

interviewee, the continuation of recreational therapy which individuals get while in school, is important for ensuring their continued progress; yet, adult coverage is limited to only primary care.

Healthcare education is remiss in addressing the community with neurodevelopmental disabilities as it relies on a fragmented system focusing on individual symptoms rather than the interrelated mental and physical conditions. Medical practitioners are trained to address individual aspects of a patient’s needs, but not the full range involved in the neurodevelopmental diagnoses. The result is a gap between needs and treatment. Major healthcare insurers are only now beginning to assess healthcare costs in relation to the effectiveness of service delivery for this population. There are no medical plans that adequately meet their needs and medical providers associate high costs with servicing this population. Moreover, the lack of recognizing the community’s unique needs during medical education has resulted in an overreliance on pediatricians who are currently the most apt in serving disabled individuals. These medical themes run parallel between both physical and mental care. According to the interviewees, there is a limited base of psychiatric and psychological services for the adult disabled population, and there is an overarching lack of training in underlying factors involved in mental health. As one interviewee put it, the individuals with disabilities or their caregivers often need to be more knowledgeable than their doctors to get proper care and treatment. Dental services to individuals with neurodevelopmental disorders are particularly lacking. The lack of a holistic medical approach, and lack of understanding of the interrelated nature of many of the individual’s symptoms and conditions, prevents quality healthcare and discourages providers and insurers from attempting to meet the community’s needs.

Social Engagement Failure to understand and provide for adults in the community extends to social and societal circumstances in which even families are responsible. Consistently in our interviews, the concept of “infantilization,” or the treatment of an adult as a child, was introduced as a significant hindrance to the adult disabled population in achieving goals or milestones throughout their life. Often, infantilization is committed by the parents and families of those with neurodevelopmental disabilities, limiting them from personal development and growth. Other social factors including the lack of understanding in which environs inhibit or prevent the disabled from engagement. Activities that are considered normal, like going to the gym or a park, may not be accessible to individuals due to physical or other intervening factors. Finally, in many circumstances society may just be wholly unaware of an individual’s needs or desires for interaction and life experiences. People with disabilities often do not have equal social interactions with people without disabilities. Whether intentional or not, the segregation of individuals with neurodevelopmental disorders is of disservice to them and society. Several interviewees mentioned the positive effect of interaction of disabled individuals not only with others with disabilities but with the community at large. On one hand, integration increases community awareness and recognition of differences. However, integration also may assist the individuals with disabilities by helping them develop functional skills and the acquisition of functional abilities, which may lead to greater independence.

The “Systems Problem” The consistent breakdown in the existing framework of resources and services for those with neurodevelopmental disorders is the absence of an overarching service provider, organizer, and

14

integrator. As one interviewee put it, “everyone is figuring it out on their own.” This failure is exhibited by the lack of a medical specialization that provides central care for all related and resulting needs for the patient. Similarly, there is no singular source of services from the state by an agency that services as an umbrella organization addressing all needs and concerns. The subsequent difficulty can best be described as a systems problem, in which no entity is involved in developing an approach to facilitate holistic care. Instead there are a variety of agencies and groups that operate as silos, providing singular care per need, and preventing service integration. One interviewee summarized this lack of coordination by suggesting that there is a need for “collaborative effort between agencies for wrap-around services.”

The lack of a system exacerbates resource scarcity and muddles caregiving opportunities for clients.

15

CAREGIVER SURVEY RESULTS The Metropolitan Center researchers conducted surveys with caregivers of individuals with intellectual and developmental disorders. The survey relied on opportunity sampling of families who were available through the duration of the study and whom the research team approached at specific locations, including fundraising and awareness events, and the FIU clinic. While the results are not based on a random sample, and as such, may not be generalizable to the entire population of IDD individuals, the findings still confirm some of the most important issues for these families, as also described in other, national studies. This local sample grounds the research in the Miami-Dade context and is an important first step in understanding the challenges of IDD individuals and their families directly from the source.

Respondent and Dependent Characteristics Of the 80 respondents in the sample, 34 (42.5%) reported the persons to whom they were caregivers was under 21, 27.5% were taking care of IDD individuals in the 21-25 age group, and 16.3% had someone aged 26-35 in their care.

The majority of respondents (80%) were biological parents and other relatives (7.5%). Most had been caregivers for over 20 years (57%).

The majority of respondents indicated their dependent was diagnosed with ASD (71.3%), , 22.5% indicated intellectual disability, and 11.3% indicated Cerebral Palsy.

Other participants indicated Down syndrome (8.8%), Praer-Willi (1.3%) and Spina Bifida (2.5%). (Respondents could choose more than one diagnosis.)

Length of Caregiving Less than 5 years Over 20 years

6-10 years

11-20 years

12.7% 15.2% 57.0%

15.2%

The majority of respondents were female (68.8%), and Hispanic (56.3%). A small majority of the respondents (54.8%) were 50 year of age or less, and 14.5% were over 65.

Respondents were distributed across the low, middle and high income categories. Approximately a third of respondents (34.5%) reported household income under $50,000. Another 29.4% indicated income of over$100,000.

Most respondents have at least a Bacherlor’s degree (27.4%) or a graduate/professional degree (35.5%).

The majority also work full time (61.1%).

Services A small majority of the respondents (52.1%) indicated their dependent requires medium level of support, which means their dependent is able to perform some daily tasks independently but needs assistance with others. A small percentage (5.5%) indicated their dependent requires low level of support (only minimal assistance, from time to time, and able to live on their own). Over a third (42.5%) have dependents who require 24/7 supervision and support.

The majority of respondents (59%) are the primary caregiviers of their dependents, whild 18% indicated they share responsibility with a spouse or a partner. Another 14.8% reported their spouse or partner

16

was the primary caregiver. Only 1.6% indicated the individual they assist is capable of taking care of themselves, 1.6% have a paid, live-in caregiver, and 4.9% rely on a relative for their dependent’s care.

When asked what services their dependents receive, the majority noted Medicaid waiver. Overall, significant percentage of respondents indicated their dependents receive services that directly seek to address their physical needs. However, smaller percentages selected any off the other types of services typically provided to IDD individuals to ensure good quality of life and integration, including public housing assistance (1.6%), financial planning (10.9%), job coaching (15.6%).

The gaps between services received and those needed were most significant in the areas of behavioral therapy, job coaching and college education vocational training. Interestingly, medical care was selected as a service needed by only 7.8% of respondents.

Serviced Received and Need to Receive Receive

Need to receive

Medicaid waiver

62.5%

Behavioral therapy

48.4%

Medical care

46.9%

Special transportation services

45.3%

Personal care assistance

40.6%

29.7% 7.8% 20.3% 20.3%

Financial support

25.0%

17.2%

Case management (referrals)

23.4%

15.6%

Physical therapy

18.8%

25.0%

Pastoral or spiritual support

17.2%

Job coaching

15.6%

Financial planning 10.9%

7.8% 29.7% 17.2%

College education/vocational training 9.4% Group home placement 6.3%

15.6%

26.6% 18.8%

Home visits from medical practitioner (12)3.1% 14.1% Public housing assistance1.6%

21.9%

Respondents were presented with a list of statements on which they had to indicate whether they agreed or disagreed. These responses confirmed that medical care appears to be of concern for a smaller percentage of respondents than other challenges such as housing, transportation and education.

While 82.1% agreed with the statement “The person I care for is receiving adequate medical care,” only 56.5% believe their dependent has adequate educational opportunities. Also, only 40% feel they have enough information to make good choices about housing options for their dependent, and 61.2% have a support plan in place for their dependent in case they are unable to provide care.

Some of the other responses also point to the needs of caregivers in terms of support and information.

More than a third (38.5%) reported they do not have enough time for themselves due to their caregiving responsibilities. A third also feel they would not be able to take care of their dependent on their own,

17

implying they are currently receiving assistance from others. More than two-thirds (69.7%) indicated they need help navigating services to understand the different systems, paperwork and deadlines.

However, 71.2% know where to get help for their dependent’s needs.

To what extent do you agree or disagree...

Agree

Not Sure

Disagree

The person I care for is receiving adequate medical care

82.1%

16.4%

I am connected to friends or other families connected to disabilities

80.3%

18.2%

I know how to get transportation for the person I care for when they need it

71.6%

20.9%

I know where to get help for what the person I care for needs

71.2%

27.3%

I need help navigating services to understand the different systems, paperwork, and deadlines

69.7%

28.8%

I can take care of my dependent on my own

65.2%

33.4%

I have a support plan in place for my dependent if I am unable to care for them

61.2%

34.3%

I don’t have enough time for myself due to my caregiving responsibilities

60.0%

38.5%

My dependent has adequate educational opportunities

56.5%

38.7%

I have enough information to make good choices about housing options

40.0%

50.8%

The most frequently mentioned agency from which respondents reported receiving services was the Agency for Persons with Disabilities (20.6%), followed by Doctor’s Office (16.2%) and a nonprofit organization (7.4%). The majority of respondents receive medical services in non-emergency situations either from a pediatrician or their family doctor (64.7%). Some interviewees noted that families may continue to rely on their pediatrician for medical care of their dependent, and the survey results show that 15.4% of caregivers with dependents over 21 receive medical care from a pediatrician. Additionally, 8.8% take their dependent to the emergency room even for non-emergency medical reasons and 7.5% go to an urgent care center. A small majority indicated their dependents’ medical expenses are covered

by Medicaid (54%), while 19.4% selected employer-provided insurance. Another 7.5% received medical coverage through their spouse or partner’s insurance, and 9.0% through private insurance, including the Affordable Care Act. Challenges Caregiving to adult IDD individuals is related to multiple difficulties related not only to the physical challenges of providing care for a fully-grown adult, but also related to financial responsibilities and caregiver quality of life issues. The most obvious way in which caregiving can cause a strain on caregivers is though the expenses they may incur to cover their dependent. The majority of respondents (58.8%) 18

reported they cover more than 75% of their dependent’s expenses, while another 17.6% cover 50-75% of expenses.

While a small majority of survey participants (56.35) believe their dependent’s living at home is the ideal living arrangement, over 40% also indicated various other preferred living arrangements. The most popular among those was the option for their dependent to live on their own (10.9%).

What would be the ideal living arrangement for your dependent as an adult?

Where s/he lives right now Apartment or house that s/he OWNs Apartment or community that includes only people with disabilities Residence with more than 15 non-related people with disabilities In someone else’s home, like a family member Group home with 4 to 6 other non-related people with disabilities Group home with 3 or fewer non-related people with disabilities Other In an apartment or house that s/he RENTs Any arrangement that my dependent chooses

56.3% 10.9% 7.8% 6.7% 6.3% 4.7% 3.1% 3.1% 1.6% 1.6%

Respondents were presented with a list of challenges grouped into three categories. In the Economic Challenges category, the most frequently selected challenge was overall economic security (55.2%), followed by ‘having enough money to pay for care (48.3%), and ‘having enough Economic Challenges retirement savings (43.1%).

Overall economic security The most frequently selected personal challenges included ‘understanding Having enough money to pay for care government programs such as Medicare or SSI’ (31.0%), ‘finding trained and reliable Having enough retirement savings home care providers’ (22.4%), and ‘having someone to talk to that understands what I Having a full-time job 15.5% deal with’ (22.4%). The challenges which were se4lected by the smallest percentages Paying for day or night care so I can work10.3% of respondents included ‘getting information about the illness/disability of Modifying my home to meet care10.3% the person I care for’ (1.7%), ‘finding requirements culturally sensitive resources’ (1.7%), and ‘identifying available transportation options’ (3.4%).

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55.2% 48.3% 43.1%

Caregiving Challenges Understanding government programs such as Medicare or SSI

31.0%

Having someone to talk to that understands what I deal with

22.4%

Finding trained and reliable home care providers

22.4%

Dealing with dangerous, unwanted, or difficult behaviors of the person that I care for

17.2%

Finding non-institutional, community-based care

13.8%

End of life planning

13.8%

Ensuring the safety of the person I care for

12.1%

Communicating with professional resource providers

10.3%

Emergency Care when I need to care for another family member

10.3%

Finding out about legal options

10.3%

Finding affordable residential care Making decisions about the medical treatment of the person I care for

8.6% 6.9%

Balancing caregiving with other family responsibility was the most frequently selected caregiving challenge (37.9%), followed by ‘meeting personal needs (27.65). Support for siblings of the individual with a disability was seen as a caregiver challenge by the smallest percentage (13.8%).

Personal Challenges Balancing other family responsibilities - e.g., children, marriage, housework.

37.9%

Meeting my personal needs such as personal time, exercise, etc.

27.6%

Adjusting my work schedule, meeting my work responsibilities

22.4%

Getting enough rest

22.4%

Building inclusive friendships for my family member

22.4%

Respite care to have time to take care of my own needs

22.4%

Being able to go on regular vacations Getting cooperation and assistance from other family members Support for siblings of the individual with a disability

20.7% 15.5% 13.8%

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HOUSING OPTIONS FOR INDIVIDUALS WITH DEVELOPMENTAL DISABILITIES The review of various options seeks to map out guiding principles in ensuring greater access to affordable housing, guarding the individual’s civil rights, and improving their quality of life. Given the diversity in the IDD community, there can be no single solution to their residential needs. Instead, a series of consistent principles appear throughout the Intellectually and Developmentally Disabled (IDD) housing literature and experience that outlines a framework with a multitude of models intended to meet the community’s varied needs. This means having a full range of housing options available for individuals to select from and not forcing anyone into a setting based on their disability. While some models provide supportive services on site and in conjunction with residence, meaningful independence means that residents have access to voluntary services in an environment they see fit, rather than obligatory support and isolation. Moreover, maintaining the individual’s rights means that residents receive equal terms and conditions of tenancy as non-IDD occupants, protecting them from arbitrary removal from their residence.

The difficulties confronting the IDD community in obtaining affordable and equal housing are profound, with IDD adults having few housing options, and disproportionately high poverty and discrimination. The IDD community specifically struggles in ‘navigating’ the cliff from adolescence to adulthood, with most IDD individuals seeing a dramatic reduction or complete loss of services between the ages of 22 and 26 in Florida. A 2008 Florida survey conducted by the Center for Autism and Related Disabilities reported two-thirds of families with 18-22 year olds with autism spectrum disorder (ASD) were unaware of possible transitional services.16 Even if families have a plan for transition and housing, finding an affordable option can be impeded by an individual’s disability-specific needs, limiting already scarce accommodations.

Additionally, many IDD adults lack financial resources to pay for housing and are heavily reliant upon government support. The average lifetime cost of just one individual with autism has been estimated to cost society $3.2 million in 2003 dollars, with the bulk of costs derived from adult care and lost productivity.17 These problems have created the need for government assistance to address these financial pressures and help in housing costs and placement. Despite these difficulties, it is important that the rights of the IDD community are protected and that IDD adults are guaranteed equal treatment in housing and services as any other American citizen. 18 A challenging aspect in government support of a specific community, many with unique needs based upon disability, is safeguarding the individual’s choice and independence in their housing, and not segregating them, providing unequal services, or placing them somewhere involuntarily.

While IDD housing may be physically or environmentally specialized for the disabled, the needs and desires of the tenant are the same as non-IDD individuals: housing that provides community access, opportunity for work and recreation, connectivity, and private space. As articulated by fair housing lawyer Henry Korman, “A system of housing and supportive services must first proceed with respect for 16

17

18

21

Denis Resnik and Joe Blackbourn. "Opening doors: A discussion of residential options for adults living with autism and related disorders." (2009).

Michael Ganz, "The lifetime distribution of the incremental societal costs of autism." Archives of pediatrics & adolescent medicine 161, no. 4 (2007): 343-349.

Henry Korman, “Best Practice Principles for Achieving Civil Rights in Permanent Supportive Housing, “Opening Doors, no. 29 (2006): 1-12.

the desires and needs of the individual person, not the imperatives of the service provider, nor the category of disability served by the provider. The design of the supportive housing must preserve and enhance human relationships, and nurture full and integrated participation in family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.” 19 Regardless of the following typologies and models, the most important issue facing the IDD community is the need for greater access to affordable residential settings of choice.

Typologies Under the Americans with Disabilities Act, “A public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” 20 IDD housing fully integrated into the wider community has become the primary residential setting following decades of depopulation of segregated institutions. The IDD residents of state-run institutions has seen an 83% decline from its peak 1967 population of 194,650, to just 32,909 in 2009. 21 Integration has become the residential ideal for the IDD community, with a wide variety of housing options developed towards this end. Yet, the exact meaning of integration has become disputed, with disagreement on what forms it can take and which settings are best for the individual. While no IDD advocate is arguing for a return to state-institutionalization, there has been growing opposition to the individualized approach of integration in favor of a collective approach, aptly termed congregation.

INTEGRATION: “[T]ypical, residential housing that is scattered throughout the community among residents without disabilities. [I]ntegrated housing links individuals with disabilities ranging from moderate to severe to services that he or she needs to live in the community, i.e., personal attendants, transportation, and employment.”

CONGREGATION: “[G]roups of individuals with disabilities live close to each other in the same area of a building, or live together in the same house.

Individual choice and control ranges from one specialized setting to the next, with some residents free to come and go as they wish and others unable to leave without staff supervision. Some specialized housing may also offer a bundled package of supportive services and/or services targeted to the needs of a specific disability.”

See footnote 21 for definition sources.

The following use of integration and congregation 22 as two separate typologies of IDD residential setting is not meant to provide legal definitions, instead they are meant to illustrate the environment their respective models create for residents. Integrated residences can still become isolated if neighbors choose not to interact and engage IDD households, or if the residence has a negative impact on the individual’s mobility and ability to access the community. Likewise, congregate housing can still be highly integrated as a self-contained community that creates greater levels of contact and engagement than independent living could ever provide, or by providing an apartment where one can still readily maintain employment or participation 19 20

21

22

Henry Korman, “Best Practice Principles for Achieving Civil Rights in Permanent Supportive Housing,” 7.

Americans with Disabilities Act of 1990. Public Law 101-336. § 35.130(d). 108th Congress, 2nd session (July 26, 1990) National Council on Disability, Deinstitutionalization Toolkit, 2012, http://www.ncd.gov/publications/2012/DIToolkit (accessed on July 7, 2017).

Arizona Developmental Disabilities Planning Council, “If You Build It, They Will Come: Present and Future Housing Options for Arizonans with Intellectual and Developmental Disabilities (ID/DD)”, 2012: 20-21.

22

in the community. Therefore, these two typologies are not mutually exclusive or absolute, rather they are an acknowledgement of a spectrum of residential settings that may provide a variety of experiences to the growing IDD adult population.

The most important distinction between these two settings is size, with most integrated models having resident totals capped at four and congregation averaging a few dozen. Thus, integration is an individual- or independence-driven approach, with no more than four IDD adults living together and normally located within a standard American neighborhood. The intent is for individuals to choose where and how to live, with access to all civic or social institutions, and all neurotypical experiences and options readily available to residents. In contrast, congregation includes residential settings ranging in size from single to multi-structure communities with on-site affiliate amenities. These models reject the assertion of their housing being institutional living, and instead frame themselves as intentional or planned communities. Moreover, congregate communities also tend to provide higher levels of support and care than small integrated housing, as well as opportunities such as employment and social activities. Both streams of thought argue that they are simply supporting the individual’s choice, with the integration camp arguing for a setting that reflects neurotypical environs and the congregation camp developing a separate community entirely.

In truth, neither typology is better than the other, and instead complement one another in providing IDD adults with a variety of residential settings to choose from. Different settings may work for different people based upon either needs or preference, and the guiding principle should be the individual’s right to select the setting in which they feel the most comfortable. Each has its own positive and negative aspects, with each resultant model creating different opportunities and drawbacks. Integration provides a personalized approach for highly independent individuals that wish to engage in the general population on a regular basis. Conversely, congregate settings provide a self-contained community that can manage a range of needed support and assistance, while also delivering daily interaction and engagement with opportunities to engage in the general population as desired. On the advocacy front, integration has had a multi-decade head start, placing the term into legal definitions for funding purposes as seen in the previously cited ADA section. Congregation, in contrast, has only recently begun to find its voice and is, in effect, a product of some disadvantages to the integration model felt by the IDD community’s own members. 23 These disadvantages are the isolation and often absence of structure that many experience when living on their own or in the limited network often found in the integrated models. Advocates of congregate housing will often argue that integrated housing can never truly be integrated because of societal discrimination and the IDD community’s specific needs. 24

Models Within these two approaches, there is a variety of models based on services provided, funding sources, or residential settings. Some residential settings tend to group those of similar disability together, especially when the residence is run by a private provider attempting to streamline services. This, in principle, creates segregation by limiting choice. The distinction is between housing broadly available to disabled individuals and housing available by category of disability. Restricting residential setting by the 23 24

23

Arizona Developmental Disabilities Planning Council, If You Build It, They Will Come, 2012.

Amy Lutz, “Who Decides Where Autistic Adults Live,” The Atlantic, May 26, 2015, https://www.theatlantic.com/health/archive/2015/05/who-decides-where-autistic-adults-live/393455/ (accessed July 7, 2017).

category of disability limits choice, integration, and other rights and opportunities enshrined in the ADA.25 A plurality of models should be available to the IDD community and models should support residence first and the availability of services second. While this seems somewhat counterintuitive given the services needed by the disabled, it ensures the IDD community is treated as equally as any other American seeking quality affordable housing first, and services towards their individual circumstances second. Some housing models makes available a wide range of residential settings, while also allowing services to be made available either on-site or off-site. This allows the individual to choose what setting or home would be best for them, just as anyone without a disability would do.

Due to limited financial resources and housing availability, only a small portion of the Florida IDD community is currently living outside of a family member’s home, just 24%, as shown in Figure 1. Yet, it is the setting of the 24% where the IDD community will see the greatest growth as both the public and private market begins to fill the demand for a growing adult population in need of residence outside of the family household. In Figure 1, the ‘Alone or with a Roommate’ category can be considered IDD Floridians living in integrative housing (17%), while the ‘Supervised Residential Setting’ is the number of Floridians residing in congregative or institutional models (7%). Nationally, the percentage of individuals living ‘Alone or with a Roommate’ was 16%, similar to that of Florida, yet the percentage in ‘Supervised Residential Setting’ was 13%, almost double that of Florida. 26 This notably lower percentage of IDD Floridians living in supervised residential settings may be due to the state’s low fiscal effort towards IDD services or the percentage of caregiving families supported by state IDD agencies, both of which are less than half the national average.27 Figure 1. Estimated Number of IDD Individuals in Florida by Living Arrangement (2013) 28 16+2,087 Persons; 3,302 7-15 Persons; Alone or with Roommate, 17%

≤6 Persons; 15,742

With Family Caregiver, 76%

With Family Caregiver ≤6 Persons

Alone or with Roommate 7-15 Persons

Supervised Residential Setting 16+ Persons

Figure 2, recreated from the integral IDD housing study, ‘Advancing Full Spectrum Housing’ by Sherry Ahrentzen and Kimberly Steele of Arizona State University 29, illustrates the twofold spectrum of IDD housing - a vertical range of services intersecting a horizontal range of physical settings. Overlaying this 25 26 27 28

Henry Korman, “Best Practice Principles for Achieving Civil Rights in Permanent Supportive Housing.”

D. Braddock et al., “The State of the States in Intellectual and Developmental Disabilities Project,” 2014.

D. Braddock et al., “The State of the States in Intellectual and Developmental Disabilities Project,” 2017.

Figure created from data collected from D. Braddock et al., “The State of the States in Intellectual and Developmental Disabilities Project,” 2014

24

chart are the predominant models that this best practices has identified as the national models for IDD adult housing. A further detailed listing organized under the ‘integration’ and ‘congregation’ designations previously discussed, follows below. These models are neither exhaustive, nor mutually exclusive, and some models may overlap while others may take aspects piecemeal. Names are subject to regional differences and may have multiple interchangeable terms.

Figure 2. Spectrum of IDD Housing by Service & Design

Institution Campus Intermediate Care Facility Farmstead

Foster Home

Planned Community Group Home Independent Living Public Housing

Finally, just as there is a distinction between integration as a legal concept and a social concept, there is a similar differentiation of the legal and social aspects of the institution as a housing arrangement. An institution, as defined by Medicare and Medicaid, is “an establishment that furnishes (in single or multiple facilities) food, shelter, and some treatment or services to four or more persons unrelated to the proprietor.”30 In effect, this may include a wide variety of public and private residential settings that are larger than a home and provide desired support. In contrast, for most people the term institution conjures the imagery of state-run facilities that Medicare and Medicaid regulations designated as an 29

30

25

Figure recreated with new examples from data presented by Sherry Ahrentzen and Kimberly Steele, “Advancing Full Spectrum Housing: Design for Adults with Autism Spectrum Disorders,” 2009, http://shred-of-dignity.org/Shred-of-Dignity/Environments_files/Download_the_full_report_in_PDF_format.pdf (accessed July 7, 2017).

42 C.F.R. § 435.1010

‘institution for the mentally retarded or persons with related conditions’. 31 Here they define it as an “institution (or distinct part of an institution) that A) is primarily for the diagnosis, treatment, or rehabilitation of Individuals with Intellectual Disabilities or persons with related conditions; and B) provides, in a protected residential setting, ongoing evaluation, planning, 24-hour supervision, coordination, and integration of health or rehabilitative services to help each individual function at his greatest ability.”32 The key distinction is scale: 24-hour supervision makes for a dramatically different setting where the individual lacks most forms of independence and choice. For that reason, in the models that follow, an institution will be reserved for large state-run facilities where the individual may be residing without choice, under 24-hour supervision, and without a private and lockable room. When the institution is not state-run (i.e. privately-owned and implying some level of voluntary enrollment, it will be considered a ‘campus’, if large, or an ‘Intermediate Care Facility’ (ICF), if smaller. These distinctions are made in the following section to illustrate the variety in residential settings for the IDD community. However, when funding is discussed later, it will be clear that most settings outside the family home that are not clearly integrative are presumed institutions by the state, whether run publicly or privately. Figure 3 shows costs associated with different models in 2015 dollars, calculated at a per person cost. The per person costs are highest in state-run, large facilities and decrease for smaller residential settings.

Figure 3. Average Annual Cost of Care per Person by Residential Setting (2015) 33 $300,000 $250,000

$256,400

$200,000 $150,000

$152,453

$129,233

$100,000 $62,008 $50,000 $0

31 32 33

USA

$97,141

State-Operated 16+ Person I/DD Institutions

Florida $44,392

7+ ICF/ID, Other Group 6 or Fewer ICF, Group, Settings Host, Foster Homes

$27,593

$13,241

Supported Living

42C.F.R. §435.1009 Ibid.

Figure data retrieved from D. Braddock et al., “The State of the States in Intellectual and Developmental Disabilities Project,”2017.

26

Integration Model Settings

34

35

27



Independent Living: This model involves a variety of residential settings that are based upon private ownership or leasing of standard housing by the IDD individual or family. Ownership can take the form of an individual or family possessing a residence outright, a residence whose ownership is divided between multiple individuals or families, or a tenancy agreement in a larger non-IDD exclusive community. Similarly, this residence can range between a single-family home to an apartment, with the individual living alone, with roommates, or with a significant other. This model favors higher functioning IDD individuals that rely on less support and assistance, with primarily off-site care or privately secured support that comes to the home sparingly. Furthermore, this involves aggressive planning with significant personal funding and familial support if the individual owns the home. A sophisticated network is necessary to ensure both rights are maintained and adequate support received. Some models have developed, such as the example below, which is meant to be a neurologically mixed residence where individual IDD adults may rent an apartment and choose community services as desired. This model would fall under supported living in Figure 3, with per person costs of $27,593 nationally and $13,241 in Florida.34



Public Housing: Low-income housing, through Public Housing Authorities (PHAs) or housing choice vouchers (HCVs), provides an option that is likely to be of last resort due to the lack of services tied to residence and the financial condition that causes an individual to seek residential assistance. The IDD community experiences higher rates of critical poverty then the general population and are designated by the Department of Housing and Urban Development (HUD) as ‘chronically homeless’ due to their unique reliance on this government model. HUD’s exclusive project grants to nonprofits to construct supportive housing, Section 811, has been the Federal Government’s attempt to address the IDD housing shortage. While this assists those of greatest need, many cannot rely on these programs due to growing waiting lists. Financial assistance for this model is dependent upon local HCVs and the individual’s income. 35



Foster Homes: While not found universally, foster homes for IDD adults are family households licensed by the state to provide familial residence and minor training or support. While some states only allow foster homes for IDD children, others permit adults with disabilities to reside in special foster homes as well. Due to regulation, it is a very state-specific model. Regulation focuses on safety and care, ensuring that the host residence is capable and trained in providing the needed assistance and support. The foster home only provides standard residential and familial care, and thus, is for individuals who may need only modest daily care, not 24-hour support. The costs associated with this model, illustrated in Figure 3, is $129,233 per person nationally and $44,392 in Florida.36

See Errol Cocks et al., "Individual supported living manual." (2012); First Place, “Introducing Supportive Housing at First Place, https://www.firstplaceaz.org/apartments/overview/ (accessed July 9, 2017).

U.S. Department of Housing and Urban Development, Section 811 Supportive Housing for Persons with Disabilities, https://portal.hud.gov/hudportal/HUD?src=/program_offices/housing/mfh/progdesc/disab811 (accessed July 9, 2017).



Group Homes: Group homes are residences typically owned by a private service provider that operates the household and leases rooms, though many county and state governments operate small numbers of group homes as well. The level of integration in this model depends upon the physical location and design of the home, and if services and care are provided on-site. The dramatic range in setting and services places this model on both the integration list and the congregation list. Funding ranges from public funds to tenant fees, though still generally sourced from state or federal funds. Regardless, where there is private ownership, group homes are licensed and regulated by the state. Costs associated with group homes are dependent upon the tenancy. If publicly operated, the costs are similar to those of foster homes above, $129,233 nationally and $44,392 in Florida. If privately operated, the costs are similar to supported living and are $27,593 per person nationally and $13,241 in Florida. 37

Congregation

36

37

38

39



Institutions: Despite a significant decline nationwide, there continues to be a reliance on institutionalizing IDD individuals for residential and medical care in most states. Placement is often without choice under such circumstances as the Baker Act or simply due to the lack of other viable options because of complex personal and medical needs. In many circumstances, residents in most institutions are those that are too old to be moved or need profound care and attention. This trend may be linked to state policies such as depopulation or prohibiting new admissions. This model of support has been declining since the Supreme Court case Olmstead v.

L.C., which ruled that states were required to remove unnecessary segregation based on disability. Therefore, institutions are the model of last resort—and, as illustrated in Figure 3, very expensive to operate. The national per person average for a state-run institution is $256,400 and $152,453 in Florida.38



Public Housing: Depending upon the residential setting, PHA housing can be congregate. Public housing is congregate when a complex is set aside exclusively for the disabled, when a facility is single room occupancy, or when the facility is an assisted living or nursing home. While ensuring that there is a large and central source of disabled housing or hospice care, it also segregates them into solitary communities; thus, making them a congregate setting. 39



Intermediate Care Facilities (ICF): ICFs are a category of housing that are defined by federal and state governments for funding purposes. By federal standards, the ICF is an institution that comes in a wide variety of forms depending on each state and provides a spectrum of care, support, and rehabilitation. Included in this model are nursing homes, assisted living facilitates, rehabilitation centers, and similar residential clinics. The ICF is an example of the overlap in

The Mentor Network, “Host Home,” http://thementornetwork.com/program/host-home/ (accessed July 9, 2017).

Barber National Institute, “Community Group Homes for Adults,” https://www.barberinstitute.org/location/philadelphia-region/community-group-homes (accessed July 9, 2017).

Florida Department of Children and Families, “Florida State Hospitals (FSH),” http://www.myflfamilies.com/service-programs/mental-health/fsh (accessed July 9, 2017).

Orlando Housing Authority, “A Moving to Work (MTW) Agency Since 2011,” http://www.orl-oha.org/PHComplex/Meadow_Lake.html (accessed July 9, 2017).

28

models, with smaller ones being similar to group homes and larger ones being similar to campuses. ICFs range in cost from $62,008 to $129,233 nationally, and from $44,392 to $97,141 in Florida.40 

Transitional Education: While not a long-term housing option, many educational programs have developed short-term housing for IDD adults enrolled in transitional education programs.

Nationwide, these programs are generally referred to as Transition and Postsecondary Programs for Students with Intellectual Disabilities (TPSID). These programs tend to target intellectually disabled adults, with curriculum focusing on developing and growing skills aimed at ensuring social integration and employability. Other programs have broader enrollment for other disabilities, or even enrollment of neurotypical students. Most programs provide a degree or some sort of certification after completion, and many provide internships during enrollment with job placement after completion. Costs associated with this are highly dependent upon the program or school, with those operated at traditional colleges having comparable pricing. 41

The following three models can be very similar in aspects of size and shared purpose, but different in outcome, an important distinction when attempting to categorize models. All three can be viewed as separate branches under the same concept of planned, or intentional, communities. All three are focused on providing large residences and activities to their tenants; yet, all three have different subsequent objectives. Supportive communities are residential complexes that mirror traditional apartment complexes in urban and suburban locations, and focus on residence and access. In contrast, many other settings can be highly diverse in structures, be very large, and blend other objectives into their mission. Farmsteads, for example, are rural residences that center on a large agricultural enterprise, while campuses are very large and center upon either entrepreneurial opportunities or health needs. The latter two models are often cited by integration advocates as institutions by a different name. Given the specialized nature of the models that follow, costs associated are highly unique to each setting. Even so, most would fall under the ‘7+ ICF/ID, Other Group Settings’ in Figure 3.

Per person costs associated with that size are $62,008 nationally and $97,141 in Florida. The larger medical campus model, however, likely has the same operating costs as a state-run institution at $256,400 nationally and $152,453 in Florida. Without access to the HCBS Waiver (See discussion in Funding section below), many of these costs are paid through the individual’s paycheck, social security check, family support, other forms of government assistance, or the community’s own funding, which similarly may be a mix of public and private assistance and commercial efforts. 

40

41

29

Supportive & Planned Communities: These communities are generally larger complexes that provide a variety of services and extracurricular activities, with many even providing day-time support and activities for non-resident IDD individuals. The primary mission of the planned community is to provide residence and support for IDD adults seeking both independence and community. The variety of facilities on-site may range from traditional residential complexes like gyms, pools, spas, and parks, to cafés, nurseries, libraries, and health clinics. Many have striking similarities to higher-end apartment complexes or retirement communities. These communities are a model that has been rapidly growing across the U.S. and has become the cornerstone of

Central Florida Communities, Inc., “Central Florida Communities, Inc. Homes and Services for Loved Ones with Developmental Disabilities,” http://www.cfccommunities.com/index.php (accessed July 9, 2017).

See Think College, http://www.thinkcollege.net/index.php (accessed July 9, 2017); CIP, http://cipworldwide.org (accessed July 9, 2017).

the congregation typology. Beyond the per person cost mentioned above, many of these facilities are built and maintained through various means of support, such as donations, grants, tax credits, and on site commercial activity. 42 

Farmsteads: Farms for the IDD community originated within the last few decades 43, and cite inspiration from similar European experiments. 44 They have quickly grown in popularity due to their therapeutic environment for the disabled and their natural ability to produce a modest stream of income. Emblematic of the funding eligibility issues faced by congregate care models, many farmsteads rely on private pay and are not eligible for the Home and Community-Based Services (HCBS) Waiver. Eligibility generally is dependent upon the boarding and support situations unique to each farm or ranch, as well as state-specific regulations. The most important factor for HCBS eligibility is the privacy of a single room with freedom of choice in activities and support. These models sell their agriculturally-based products either at farmer’s markets or through a subscription to reduce costs and provide employment for IDD adults.

Beyond residence and employment, many also offer summer or day-time services for nonresidents.45



Campuses: This model has two specific types - entrepreneurial and medical. While the latter may be run by both private and public providers, the entrepreneurial model is exclusively run by the private sector on a nonprofit basis. This model tends to have a large variety of residential settings, services, and activities. Medical campuses provide extensive therapies and specialists to provide the greatest level of care for disabled persons with the greatest needs. In contrast, entrepreneurial campuses tend to have mixed housing and homes, along with a variety of facilities aimed at providing employment and revenue generation. Examples of these include: restaurants and bakeries, greenhouses and nurseries, art studios and foundries, rental space, etc. It is important to note that these entrepreneurial and revenue generating aspects are meant to reduce residency and care costs, and provide employment for IDD adults; these campuses are not for-profit ventures.46

Funding Funding for the residential settings mentioned above similarly falls along the divide between congregate and integrative models. While state-run institutions and ICFs are funded through the government directly or through patient waivers, most other congregate settings do not receive government funds because they do not meet the integrative standards set out by the ADA to access such funding. This has left most settings, like planned communities and farmsteads, utilizing innovative funding techniques like 42

43 44

45

46

See Sweetwater Spectrum, http://www.sweetwaterspectrum.org/home0.aspx# (accessed July 9, 2017); Promise, “The Promise Concept,” http://promiseinbrevard.com (accessed July 9, 2017).

Bittersweet, Inc., “About,” http://bittersweetfarms.org/about/ (accessed July 9, 2017).

The National Autistic Society, “Somerset Residential Homes: Somerset Court,” http://www.autism.org.uk/somersetcourt (accessed July 9, 2017).

See Farmstead of New England, http://www.farmsteads-ne.org (accessed July 9, 2017); Farm in the Dell, http://farminthedell.org (accessed July 9, 2017).

See Devereux Advanced Behavioral Healthy Florida, “Viera Campus,” http://www.devereux.org/site/PageServer?pagename=fl_viera_campus (accessed July 9, 2017); The Brookwood Community, “Welcome to the Brookwood Community,” http://www.brookwoodcommunity.org (accessed July 9, 2017).

30

commercial and entrepreneurial activity to subsidize residence, while supported living and group home residents receive government assistance for their housing and services. Thus, the divide between the models above is not in size and setting alone, but also in access to financial resources.

Most IDD spending is targeted through individual assistance, with much of the funding being distributed through Medicaid, a federal healthcare service administered by states. Nationally, 75.5% of all IDD spending in 2015 was federal and state dollars spent through Medicaid. This figure was slightly higher in Florida at 78.4%.47 The remainder is a mix of smaller federal funding like Social Security Insurance and Social Service Block Grants, or State IDD supportive agencies and programs. The flagship program in Medicaid for residential funding is the Home and Community Based Services (HCBS) Waiver program, which, for most participants, pays for their housing and support services. HCBS, like most IDD funds, is given to the individual to empower them to choose where and with whom they wish to receive services in their home or community. By design, the HCBS Waiver is meant to exclusively fund integrative housing and services. As a result, they correspondingly assume all non-integrative models as having qualities of an institution. This presumption is based upon the isolating nature of congregate residence and care and, as mentioned previously, these models are often defined by states as institutions.

In 2014, the Federal Centers for Medicare & Medicaid Services (CMS) 48 issued new rules that required states to reassess the residential settings receiving HCBS funding, ensuring that no isolating setting may qualify for HCBS funds, and giving them a five-year period to reach compliance. In a guidance that followed, the residential settings listed as presumed institutions that would not be eligible for HCBS funds were farmsteads, planned communities, residential schools, and campuses or congregate facilities —in effect, most models previously listed under the congregate typology. 49 While settings that fall under these categories may have their status changed from institutional to community-based through a state challenge to the CMS during the transition period, they will face heightened scrutiny and be burdened with the responsibility to prove they are not an institutional setting. Otherwise, these congregate settings will not qualify for HCBS funding, and instead will likely contend for much smaller Medicaid funding streams such as those for ICFs or nursing homes.

While funding for the individual is meant to empower choice and autonomy, it is worth recognizing the irony in mandating the largest single source of funding for IDD residence to apply only to integrative models, thereby removing choice, and forcing many of those that wish to live in a congregative model to be financially self-sufficient. This point is perhaps illustrated when comparing the cost of care by residential setting, as shown in Figure 3. Congregative settings likely fall under the second category in the figure, housing settings for 7+ individuals, costing an average $97,141 per resident, a cost the resident will likely be unable to afford without assistance through the HCBS. As a result of HCBS restrictions, in 2015, 73% of all IDD spending in Florida was spent on six-or-fewer person residential settings or community-based services and support. Moreover, 81.3% of out-of-home placements of IDD

47 48

49

31

D. Braddock et al., “The State of the States in Intellectual and Developmental Disabilities Project,” 2017.

Centers for Medicare & Medicaid Services (CMS), previously known as the Health Care Financing Administration (HCFA), is a federal agency within the United States Department of Health and Human Services (HHS) that administers the Medicare program and works in partnership with state governments to administer Medicaid.

Centers for Medicare & Medicaid Services, Guidance on Settings that have the Effect of Isolating Individuals Receiving HCBS from the Broader Community, 2014, https://www.medicaid.gov/medicaid/hcbs/downloads/settings-that-isolate.pdf (accessed July 9, 2017)

individuals were in settings for six-or-fewer persons, with the rest living in state institutions or other larger congregate settings. 50 Funding levels nationwide for IDD support and services saw significant increases in 2009 and 2010, with many categories of federal funding peaking during these years due to a short-term increase in the Federal Medical Assistance Percentage (FMAP) for Medicaid. The FMAP percentage determines the multiplier to which the Federal Government will match State Medicaid spending. The Federal Government calculates this percentage, set at a minimum of 50% (dollar for dollar), through comparing the State’s average per capita income to that of the national average. The FMAP’s multiplier was increased for Medicaid, the primary vehicle of funding for IDD individuals and their families, through the 2009 American Recovery and Reinvestment Act as a means of fiscally countering the effects of the Great Recession. Illustrating this, Mississippi has the lowest average per capita income in the nation and thus, the highest FMAP multiplier. The State’s FMAP in fiscal year 2008 was 76.29% with a 3.22 multiplier (as in $3.22 matching of Federal Medicaid funds for every one state dollar contributed), while in fiscal year 2010, it was 84.86% with a 5.61 multiplier. As of 2017, Florida’s FMAP percentage was 61.1% with a multiplier of 1.57, a figure that places it roughly in the middle of the FMAP. 51 IDD spending levels vary greatly by state, as illustrated by Figure 4. Measured by the amount spent in each state per $1,000 of personal income, Florida is the second lowest state in total fiscal effort for IDD services in the United States. In 2015, Florida only spent $1.99 per $1,000 of personal income, only above Nevada’s $1.57.52 In contrast, the national average was $4.31, and the state with the largest spending was New York with $9.19. A significant contributing factor is Florida’s low expenditure on the HCBS Waiver program, the largest vehicle of IDD spending. While the national average of HCBS per capita spending was $107 in 2015, Florida only spent $46. Similarly, Florida’s per capita spending on individual and family support was only $32 in 2015, while the national average was $50. The result in limited IDD spending can be seen in Florida’s IDD agencies only supporting 7.2% of IDD caregiving families—well below the 14.7% national average. Also linked to spending is Florida’s disproportionately older caregiving families—25.2% of Florida IDD persons live in a family home with a caregiver over 60, the highest in the country and potentially related to the limited ability for Florida’s IDD adults to find affordable housing.53

50 51

52 53

D. Braddock et al., “The State of the States in Intellectual and Developmental Disabilities Project,” 2017.

Kaiser Family Foundation, “Federal Medical Assistance Percentage (FMAP) for Medicaid and Multiplier, 2017, http://www.kff.org/medicaid/state-indicator/federal-matching-rate-and-multiplier/? currentTimeframe=0&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:%22asc%22%7D (accessed July 9, 2017).

D. Braddock et al., “The State of the States in Intellectual and Developmental Disabilities Project,” 2017.

Ibid.

32

Figure 4. Total Fiscal Effort for IDD Services in 2015 by State 54

In fiscal year 2013, there was $1.51 billion in public spending on the IDD community in Florida, with the majority sourced from the Federal Government (62%) and the remainder funded by the state (38%). 55 Of the $944.2 million in federal funding for Florida’s IDD community, more than half (52%) was funded through the HCBS Waiver program, with 26% funded through SSI/ADC Waivers, 20% through ICF/ID funding, and 1.5% through Title XX/SSBG. The HCBS Waiver was the single largest funding stream in Florida in 2013, at 57% of all spending, with 29,068 participants receiving an average $29,500. Other forms of spending included $327.9 million towards family support, $98 million towards supported living, and $6.2 million on supported employment, with 15,617, 8,799, and 2,019 participants, respectively. 56

54 55 56

33

Ibid.

D. Braddock et al., “The State of the States in Intellectual and Developmental Disabilities Project,” 2014.

Ibid.

HOUSING FOR INDIVIDUALS WITH DEVELOPMENTAL DISABILITIES IN MIAMI-DADE Determining Miami-Dade County Housing Needs Until recently, the data to determine the needs of families and individuals with disabilities was extremely limited. Before 2009, the only method of identifying people with disabilities was using American Housing Survey (AHS) data to look for income sources associated with people with disabilities, such as social security or disability payments. 57 Over the years, AHS has worked to make estimates of worst case needs better and more precise, particularly among people with disabilities. Today, AHS directly addresses, “whether household members have any of six types of disabilities, which include four basic functional limitations—visual, hearing, cognitive, and ambulatory—and difficulties with activities of daily living—self-care and independent living.” 58 For instance, the AHS counts individuals who “had difficulty with one or more activities of daily living (ADLs): getting around inside the home, getting in or out of bed or a chair, bathing, dressing, eating, or toileting (aged 6 and older)”. 59 Now, AHS is able to report on the specific types of needs. For example, the categories for activities of daily living include: with an ADL limitation, difficulty getting around, difficult getting into bed, difficulty bathing, difficulty eating, and difficulty toileting-categories related to daily living of individuals with disabilities.

According to 2015 AHS data, Miami had 402,100 households with at least one disabled person. Within this group, approximately 150,400 households had an individual with a hearing disability, and approximately 128,600 households had an individual with vision disabilities. 60 Approximately 123,700 households had at least one individual with mental disability and a reported 224,700 households report at least one individual with physical disability living in the metropolitan area of Miami. Of the 402,100 households with a disabled member, approximately 227,900 or 56.7% are housing cost-burdened, i.e. paying in excess of 30% of their income on housing. Over 52,000 households with an individual with selfcare disability, or 54.8% of households in that category, were cost burdened. 61 Specific Needs 1.

Mental Disabilities- Autism

One of the most predominant mental disabilities affecting citizens in Miami-Dade County is Autism. The most recent autism statistics from the U.S. Centers for Disease Control and Prevention (CDC) in 2014, identify around 1 in 68 American children on the autism spectrum 62. CDC reported that “prevalence has increased by 6-15 percent each year from 2002 to 2010.” 63 Furthermore, research has demonstrated “the social outcomes for adults with autism are restricted, particularly in terms of employment and 57

58

59 60 61 62

63

U.S. Department of Housing and Urban Development, “American Housing Survey: Disability Variables and the American Housing Survey,” 2011.

U.S. Census Bureau, “Figure 1. Definition of Disability by Severity,” https://www.census.gov/people/disability/publications/disab10/figure_1.pdf (accessed July 9, 2017).

Ibid.

U.S. Census Bureau, American Housing Survey, 2015.

Ibid.

U.S. Centers for Disease Control and Prevention, “Data and Statistics,” https://www.cdc.gov/ncbddd/autism/data.html (accessed July 9, 2017).

Autism Society, “Facts and Statistics,” http://www.autism-society.org/what-is/facts-and-statistics/ (accessed July 9, 2017).

34

living arrangements.”64 The National Housing and Residential Supports Survey conducted by Autism Speaks, showed “financial security was clearly the most significant concern of people with autism.” 65 The findings highlight a great demand for more housing and residential supports options for the autistic community. The results are even more staggering when considering the “estimated 500,000 individuals with autism entering adulthood in the next decade,” thus demands will continue to increase and therefore, measures must be taken to answer the need. 66 Additionally, 76% of caregivers participating in the survey reported that despite the need, the autistic individual in their care is not currently on a waiting list for housing or residential support services, hence, indicating that their estimate of 300,000 individuals with autism who are in need of these services is likely a huge underestimate. 67 In terms of housing arrangements, individuals with autism overwhelmingly prefer to live in their own homes. The responses were as follows: My own home: 37%, at home with my family: 22%, my own home with a roommate: 58%, other: 12%. Respondents were asked to rank the most preferred type of housing - 70% were in favor of single-family homes. The survey also investigated what type of community was preferred by individuals with autism. The results indicated that 55% of the respondents preferred suburban communities. The survey likewise indicated the need for future alterations in home modifications. For instance, “32% will need sensory sensitive features (such as sound-proof walls or dimmed lighting), a quarter will need smart home technology (such as temperature and security control via smartphones) and 22% said safety features (such as door and window alarms) will be necessary.”68 2.

Chronically Homeless- Zero: 2016

Chronic homelessness remains a great concern in Miami-Dade County. The terminology of “Chronically Homeless” also references homeless individuals with a disability, as defined in section 401(9) of the McKinney-Vento Homeless Assistance Act. 69 The federal definition defines a chronically homeless person as “either (1) an unaccompanied homeless individual with a disabling condition who has been continuously homeless for a year or more, OR (2) an unaccompanied individual with a disabling condition who has had at least four episodes of homelessness in the past three years.” A disabling condition is defined as “a diagnosable substance abuse disorder, a serious mental illness, developmental disability, or chronic physical illness or disability, including the co-occurrence of two or more of these conditions.” In addition, “a disabling condition limits an individual’s ability to work or perform one or more activities of daily living.” 70 To be considered chronically homeless, the individual must live “…in a place not meant for human habitation, a safe haven, or in an emergency shelter; and has been homeless and living as described in paragraph (1)(i) of this definition continuously for at least 12 months [one year] or on at least 4 separate occasions in the last 3 years, [where each homeless occasion was at least 64

65 66 67 68 69

70

35

Kylie Gray et al., "Adult outcomes in autism: Community inclusion and living skills." Journal of autism and developmental disorders 44, no. 12 (2014): 3006-3015.

Autism Speaks, “National Housing and Residential Supports Survey,” 2013, 1-18.

Ibid.

Ibid.

Ibíd.

McKinney-Vento Homeless Assistance Act of 1987. Public Law 42. §11360(9). 100th Congress (July 22, 1987).

Office of Community Planning and Development, Office of Special Needs Assistance Programs, US Department of Housing and Urban Development, “Defining Homelessness: A Technical Guide for HUD Programs,” Washington, DC (2007).

15 days] as long as the combined occasions equal at least 12 months and each break in homelessness separating the occasions included at least 7 consecutive nights...” 71 In addition, the U.S. Department of Housing and Urban Development’s 2016 Annual Homeless Assessment Report also identifies chronically homeless people in families as “people in families in which the head of household has a disability and has either been continuously homeless for 1 year or more or has experienced at least four episodes of homelessness in the last 3 years where the combined length of time homeless in those occasions is at least 12 months.” 72 2016 Chronically Homeless Individuals73 Sheltered

Unsheltered

Total Population

Florida

1,251

4,398

5,649

Miami-Dade

110

337

447

In 2014 Miami-Dade County joined the Zero: 2016 movement aimed at ending homelessness by December 31, 2016.74 The movement encourages collaboration, with agencies involved including the United States Department of Housing and Urban Development (HUD), Veterans Administration (VA), United States Health and Human Services Departments (HHS), the Miami-Dade Public Housing and Community Development Agency (PHCD) and the Miami-Dade County Homeless Trust (HT). As described

by Ronald L. Book, Chairman of the Miami-Dade County Homeless Trust, “Zero: 2016 is one more tool in our arsenal to make sure we succeed. Getting to zero is going to be immensely difficult, but programs like this provide insight we simply wouldn’t have if we did it alone.” However, prior to Zero: 2016, the Trust had joined select counties across the US and created the “Housing First” model. According to the public announcement from the county, “‘Housing First’ means the most vulnerable homeless are offered permanent housing and supportive services regardless of issues they may have related to substance abuse, mental illness or disabilities. In Miami-Dade, this program has a 95% percent success rate.” 75

Regulations on Housing to People with Disabilities 71

72

73

74

75

National Low Income Housing Coalition, “HUD Publishes Final Rule on Definition of ‘Chronic Homelessness,’” 2015, http://nlihc.org/article/hud-publishes-final-rule-definition-chronic-homelessness (accessed July 9, 2017).

The U.S. Department of Housing and Urban Development, “The 2016 Annual Homeless Assessment Report (AHAR) to Congress, 2016: 1-76.

Michael Ullman, National Homeless Information Project. October 2016. “State of Florida Report: 2016 Homeless Census Estimates and Funding Need to End Chronic Homelessness.” http://www.nhipdata.org/local/upload/file/Florida%20Homeless%20Report%202016%20%2009_30_16%20%20final%20report.pdf (accessed June 12, 2017) Miami-Dade County, “Miami-Dade County Homeless Trust Takes Next Step to End Chronic Homelessness by Joining "Zero: 2016,” http://www.homelesstrust.org/releases/2014-11-06-zero-2016.asp (acessed July 9, 2017).

Ibid

36

To ensure Public Housing Agencies (PHAs) provide adequate services to individuals with disabilities, the U.S. Department of Housing and Urban Development (HUD) Office of Fair Housing and Equal Opportunity (FHEO) issued a memorandum to address the agencies’ “responsibility to enforce disabilityrelated civil rights laws.”76 FHEO’s purpose is to oversee and provide assurance that local PHA policies prevent unlawful discrimination under Title II of the ADA. The memorandum highlights some areas under FHEO review, including the availability of accessible housing by using interpretive services or assistive technology, and if the public housing waiting list identifies people requiring accessibility features.

HUD Responsibilities •

Develop regulations, requirements, handbooks, notices and other guidance to implement housing legislation passed by Congress

•

Allocate operating subsidies to PHAs

•

Allocate capital funding to PHAs

•

Provide technical assistance to PHAs on interpreting and applying program requirements

•

Monitor PHA compliance with program requirements and PHA performance in program administration.

According to the public memorandum, if the FHEO staff should deem some portion of the PHA not complying with Section 504 or ADA Title II, “it must attempt to secure a Voluntary Compliance Agreement (VCA) with the PHA. 77 For instance, in 2004, FHEO conducted a compliance review of MiamiDade’s PHA and “revealed deficiencies related to the physical accessibility of the common areas and individual housing units, as well as deficiencies in MDHA’s current policies and procedures. On July 8, 2004, the Department issued its preliminary Letter of Findings of Noncompliance (LOF) with Section 504 and Title II of the ADA.”78 In response, Miami-Dade County Public Housing planned to “… The County shall construct or convert a minimum of five percent (5%), or four hundred seventy eight (478), of its (9,543) Total Housing Units” in compliance with an Accessible Unit Plan. 79 The VCA also stated an increase in the number of UFAS-accessible units required under the County’s HUD-approved UFASAccessible Unit Plan. The UFAS-Accessible Unit Plan 80 included specific benchmarks and timeframes for the construction or conversion of the 478 units. In addition, the county submitted the MDHA’s NonHousing Program Accessibility Plan to ensure that MDHA’s Non-Housing Programs are accessible to National Low Income Housing Coalition, “Ensuring PHAs Assist People with Disabilities Transitioning Out of Institutions, 2011, http://nlihc.org/article/ensuring-phas-assist-people-disabilities-transitioning-out-institutions (accessed July 9, 2017).

77 National Low Income Housing Coalition, “Ensuring PHAs Assist People with Disabilities Transitioning Out of Institutions, 2011, http://nlihc.org/article/ensuring-phas-assist-people-disabilities-transitioning-out-institutions (accessed July 9, 2017).

78 Department of Housing and Urban Development, Office of Fair Housing and Equal Opportunity, Voluntary Compliance Agreement between the U.S. Department of Housing and Urban Development and Miami-Dade County by and through the Department of Miami-Dade Housing Agency, http://www.miamidade.gov/housing/library/reports/voluntary-compliance-agreement.pdf (accessed July 10, 2017).

79 Ibid 80 Uniform Federal Accessibility Standards (UFAS) sets standards for facility accessibility by physically handicapped persons for Federal and federally-funded facilities. These standards are to be applied during the design, construction, and alteration of buildings and facilities. https://www.access-board.gov/guidelines-andstandards/buildings-and-sites/about-the-aba-standards/ufas#1 76

37

persons with disabilities. According to VCA, that included, “(1) specific elements to be made accessible at each development; (2) interim timeframes and benchmarks for meeting annual rates; (3) an annual timetable that coincides with the UFAS Accessible Unit Plan not to exceed four (4) years for completion of the approved work; and (4) identification of the source of the funding to accomplish each task. The Plan must also include the designated accessible common areas at each development, including, but not limited to, accessible routes, parking, offices, community centers, meeting spaces, recreation centers, playgrounds, laundry facilities, mailboxes and trash collection sites; and, common areas that are currently inaccessible.”81 Guiding Regulations

81 82 83 84

Americans with Disabilities Act (ADA)

“The ADA prohibits discrimination on the basis of disability in employment, State and local government, public accommodations, commercial facilities, transportation, and telecommunications. It also applies to the United States Congress.”82

Title II

“Title II covers all activities of State and local governments regardless of the government entity's size or receipt of Federal funding. Title II requires that State and local governments give people with disabilities an equal opportunity to benefit from all of their programs, services, and activities (e.g. public education, employment, transportation, recreation, health care, social services, courts, voting, and town meetings).” 83

Voluntary Compliance Agreement (VCA)

When an agency is given a noncompliance Letter of Findings, in order to correct its standing, the agency must enter into a voluntary compliance agreement that needs to be written and signed by the parties, addresses the citations, specifies on the methods in which the agency will correct its errors, provide assurance that discrimination will not occur and finally “provide for enforcement by the Attorney General.” 84

Ibid.

U. S. Department of Justice, “A Guide to Disability Rights Laws,” 2009.

Ibid.

28 C.F.R. §35.173 part 35.

38

Miami-Dade County Housing Programs: Department of Public Housing and Community Development (PHCD) PHA- Public Housing and Community Development of Miami-Dade85

The PHA’s responsibilities originate in federal regulations and the Annual Contributions Contract (ACC). The PHA owns and manages public housing developments, administers the program under contract with HUD and has the following major responsibilities: • Ensure compliance with all non-discrimination, equal opportunity, and fair housing laws, and ensure that the program is accessible to persons with disabilities • Establish local policies and procedures for operating the program • Accept applications from interested applicant families and determine whether they are income eligible for the program • Maintain waiting list and select families for admission • Screen applicant families for suitability as renters • Maintain housing units by making any necessary repairs in a timely manner • Make unit offers to families (minimize vacancies without overcrowding) • Maintain properties to the standard of decent, safe, sanitary, and in good repair (including assuring compliance with uniform physical conditions standards) • Make sure the PHA has adequate financial resources to maintain its housing stock • Perform regular reexaminations of family income and composition in accordance with HUD requirements • Collect rent due from the assisted family and comply with and enforce provisions of the lease • Ensure that families comply with program rules • Provide families with prompt and professional service • Comply with HUD regulations and requirements, the Annual Contributions Contract, HUD approved applications for funding, the PHA’s ACOP 86, and other applicable federal, state and local laws.

An integral part of the gap analysis is to investigate housing arrangements that are most sustainable and conducive to high quality of life for individuals with physical and mental disabilities in Miami-Dade County. The following section discusses housing options for individuals with disability within MiamiDade County as well as counties sharing Miami-Dade’s diversity, size and affordability. This housing research looks at both the current housing needed by people with disabilities, as well as their future housing needs, when they may not be able to rely on their family as caregivers.

Public Housing and Community Development, Section 8 Administrative Plan, (Miami, FL, 2014), http://www.miamidade.gov/housing/library/reports/2014-plans/S8-admin-plan.pdf (accessed April 11, 2017).

86 Miami-Dade County, “Admissions and Continued Occupancy Policy”(ACOP), http://www.miamidade.gov/housing/library/reports/2015-proposed-plans/SM/acop-proposed.pdf (accessed July 10, 2017).

85

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During a reorganization of departments and services in Miami-Dade County, the Department of Housing and Community Development (HCD) was merged with the Miami-Dade Public Housing Agency (previously referred to as the MDPHA) that served as the County’s public housing authority. The combined department is referred to as Public Housing and Community Development (PHCD). PHCD is reportedly managing almost 9,200 units of public housing in 100 family and elderly developments. PHCD also manages several mixed-income housing developments charging rent to low-income families that can afford to bear some of the costs of housing.

PHCD addresses all aspects of planning for housing and community interests in the county area. 87 Based on the PHCD department guidelines, the county follows Title II of the Americans with Disabilities ACT (ADA) and Section 504 by providing reasonable accommodation through its housing programs and services to persons with disabilities. PHCD provides accessible housing for persons with disabilities through the modification and development of housing facilities and other services, in accordance with the Voluntary Compliance Agreement (VCA). 88 The agreement aims to meets the minimum standards for compliance and the accessible standards to the Americans with Disabilities Act Standards for Accessible Design (ADA Standards).

Meeting the Needs of Individuals with Disabilities in Miami-Dade In 2014, a person with a disability received on average $721 in SSI benefits in Florida. However, when comparing the benefits with the cost of household, the gap is substantial. SSI monthly household payment in the Miami/Miami Beach/Kendall area for a one bedroom unit is 126% percent of an individual’s SSI monthly benefits.89 Low income families living in the state of Florida can apply for affordable housing through Section 8, also known as the Housing Choice Voucher Program. Section 8 programs are administered locally by public housing agencies (PHAs). Each PHA receives federal funds from the U.S. Department of Housing and Urban Development (HUD) to administer the voucher program and to provide affordable housing to “… very low-income families, the elderly, and the disabled to afford decent, safe, and sanitary housing in the private market.”90 Individuals with disabilities qualify for two programs of the Miami-Dade County PHCD, either public housing or Section 8. Per Miami-Dade’s PHCD department, an individual/family who meets the qualifications of Section 8 may have the option of several different voucher programs.

According to the Miami-Dade, the following are eligible programs: 91 1. Affordable Housing 87

88

89

90

91

Miami-Dade County, “Miami-Dade County Entitlement Area Consolidated Plan Fiscal Years 2013 through 2017,” 2012.

Miami-Dade County, “Reasonable Accommodation,” 2016, http://www.miamidade.gov/housing/reasonableaccommodation.asp (accessed July 10, 2017).

Technical Assistance Collaborative, Inc. Consortium for Citizens with Disabilities, Housing Task Force, 2015.

“Priced Out in 2014: The Housing Crisis for People with Disabilities.” http://www.tacinc.org/media/52012/Priced%20Out%20in%202014.pdf (accessed February 17, 2017).

U.S. Department of housing and Urban Development, “Housing Choice Vouchers Fact Sheet,” 2017, https://portal.hud.gov/hudportal/HUD?src=/topics/housing_choice_voucher_program_section_8 (accessed July 10, 2017).

Miami-Dade County, “Income Limits,” 2017, http://www.miamidade.gov/housing/income-limits.asp (accessed July 10, 2017).

40

2. Fair Market Rents 3. Housing Choice Voucher Program 4. Moderate Rehabilitation Rental Program: Last opened on July 21, 2014, the program allows low-income families and individuals with a zero/efficiency, one-bedroom and two-bedroom units, these are privately owned, project based unites (not section 8).

5. Shelter Plus Care Program: The Shelter Plus Care Program provides housing assistance to homeless individuals or families who have a permanent disability––mental illness, substance abuse and/or HIV+/AIDS. The goal of the program is self-sufficiency. Funding for this program is coordinated through the Miami-Dade County Homeless Trust. Supportive services provided by sponsors include mental health, drug or alcohol abuse treatment, transportation, life skills training, case management, etc. According to the PHCD, the Miami-Dade Shelters and nonprofits participating in this program include Community Health of South Dade, New Horizons Community Mental Health Center, Douglas Gardens Community Mental Health Center, and Better Way of Miami, Carrfour Supportive Housing, and Camillus House.

6. Single Room Occupancy Program The capital budget for public housing is inadequate to meet the tremendous rehabilitation needs of the 8,400 units in Miami‐Dade County’s public housing stock. 92 Additionally, the various lists PHCD has to address the housing needs of low income and disabled individuals have been closed to new applicants for years, as the department is still trying to address the needs of those on the waiting list.

The PHCD follows the ADA which protects three categories of individuals with disabilities: 1) Individuals who have a physical or mental impairment that substantially limits one or more major life activities, 2) Individuals who have a record of a physical or mental impairment that substantially limited one or more of the individual's major life activities, and 3) Individuals who are regarded as having such an impairment, whether they have the impairment or not. 93 A person with a disability, as defined under federal civil rights laws, “is any person who: has a physical or mental impairment that substantially limits one or more of the major life activities of an individual, or has a record of such impairment, or is regarded as having such impairment.” The phrase “physical or mental impairment” includes:

92

93

41

•

“Any physiological disorder or condition, cosmetic or disfigurement, or anatomical loss affecting one or more of the following body systems: neurological; musculoskeletal; special sense organs; respiratory, including speech organs; cardiovascular; reproductive; digestive; genito-urinary; hemic and lymphatic; skin; and endocrine”

•

“Any mental or psychological disorder, such as mental retardation, organic brain syndrome, emotional or mental illness, and specific learning disabilities. The term ‘physical or mental impairment’ includes, but is not limited to: such diseases and conditions as orthopedic,

Miami-Dade County Public Housing and Community Development, Miami-Dade County, Florida, FY 2016 Consolidated Annual Report, (Miami, FL, 2017), http://www.miamidade.gov/housing/library/reports/2016caper/2016-caper.pdf (accessed July 10, 2017).

Americans with Disability Act, “Title II Technical Assistance Manual,” https://www.ada.gov/taman2.html#II2.2000 (accessed July 10, 2017).

visual, speech and hearing impairments, cerebral palsy, autism, epilepsy, muscular dystrophy, multiple sclerosis, cancer, heart disease, diabetes, mental retardation, emotional illness, drug addiction and alcoholism. ‘Major life activities’ includes, but is not limited to, caring for oneself, performing manual tasks, walking, seeing, hearing, breathing, learning, and/or working. ‘Has a record of such impairment’ means has a history of, or has been misclassified as having, a mental or physical impairment that substantially limits one or more major live activities. ‘Is regarded as having an impairment’ is defined as having a physical or mental impairment that does not substantially limit one or more major life activities but is treated by a public entity (such as the PHA) as constituting such a limitation; has none of the impairments defined in this section but is treated by a public entity as having such an impairment; or has a physical or mental impairment that substantially limits one or more major life activities, only as a result of the attitudes of others toward that impairment.”94 The above definition of disability determines whether an applicant can participate in the benefits of individuals with disabilities under the federal disability civil rights laws. The application process for housing assistance is extremely generic and does not require a specification on the status of disability or ask for the specific needs of the individual with disabilities. However, individuals with disabilities can request for reasonable accommodations by completing and submitting the Public Housing Agency and Community Development Reasonable Accommodation Request form found online, which allows individuals to request changes or assistance in order to utilize the benefits of the PHCD program.

According to their definition, “a reasonable accommodation is a change, modification, alteration or adaptation in policy, procedure, practice or program of a housing facility that provides a qualified individual with a disability the opportunity to participate, or benefit from, a housing or non-housing program or activity.”95 In order to qualify the individual must be considered to be a person with disability under the following ADA definition: 96 

A physical or mental impairment that substantially limits one or more of the major life activities



A record of such impairment



Regarded as having such impairment

The request form allows the individual to: (A) “change or special or special feature in a PHCD dwelling, building or property”, and (B) assistance with, or change in, a PHCD practice, rule, policy, procedure, program, or service. The form provides space for the individual to describe the problem, describe the type of change or assistance, and describe how this change or assistance will help the individual with his/her problems. The request form provides examples of possible accommodations by area of unit, such as providing accessible or adjustable closet rods and shelves, providing grab bars in public restrooms in common areas, providing visual and audible alarms for individuals who are deaf or hard of hearing, providing visual alarms in each room, lowering kitchen sinks, or providing accessible cabinets.

However, individuals enrolled in Section 8, according to the request form, must take such requests to 94 95

96

Ibid.

Miami-Dade County, “Reasonable Accommodation,” http://www.miamidade.gov/housing/reasonableaccommodation.asp#1 (accessed July 10, 2017).

Ibíd.

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the landlord. Housing Choice Voucher (Section 8) residents may also request a reasonable accommodation used by Section 8 Housing Choice Voucher (HCV) Program. These are different from PHCD's forms and are reviewed and processed by the Miami-Dade Housing Choice Program's ADA Coordinator.97 Once eligibility for housing is verified, applicants are then placed on a waiting list managed by a lotterylike system. According to Miami-Dade County, the reason for this approach is the great demand placed on public housing. Therefore, it was determined a lottery system was “…the fairest way for housing authorities to select families.” According to the description of the process, applicants for the programs are placed – “using a computerized random selection system - on a ranked/position list number waiting list.” 98 The opening and closing dates of any open waiting list period will be advertised in advance. In order to reach the widest eligible population, the agency uses outreach methods such as placing notices in churches, synagogues, and other places of worship or placing notices to government offices including but not limited to Miami-Dade County regional libraries, Miami-Dade County Community Action Agency (CAA), Social Security Administration, and State of Florida Department of Children and Families. The objective of the marketing approach is to guarantee “…inclusion on its waiting list of all people without regard to race, national or ethnic origin, color, sex, religion, age, disability, familial status, marital status, ancestry, status as a victim of domestic violence, dating violence or stalking, actual or perceived sexual orientation, gender identity or gender expression, pregnancy or source of income.” As stated in several of the county’s announcements, the opening of the waiting list is advertised in a minimum of three newspapers to include, “The Miami Herald, the largest paper of daily general circulation; The Miami Times, the paper with the largest circulation among African-Americans; Diario Las Americas, a Spanish Neither of the lists indicate whether language publication; the Haiti en March or Kiskeya there are preferences or priority status Herald, Haitian language publications; and The Voice, a publication for disabled people.” The given to individuals with disabilities. waiting list ranking process is also said to follow the State of Florida laws.99 According to the PHCD there are different waiting lists serving the department of public housing. There are two main individual waiting lists: public housing and Section 8. Generally, waiting lists for public housing needs tend to be shorter than Section 8, however, each carries individual characteristics.

Nonetheless, neither of the lists indicate whether there are preferences or priority given to individuals with disabilities. The ACOP states, “PHCD may adopt admission preferences for selection of families admitted to the public housing program based on admission housing needs and priorities as determined

by PHCD. Admission preferences are subject to the specific admission preference being indicated in the housing application. Applicants requesting an admission preference should be properly coded in the waiting list.” In addition, “PHCD will not hold its units vacant for applicants with an admission preference, nor will it relax eligibility or screening criteria to admit otherwise unqualified applicants with 97 98

99

43

Ibid.

Miami-Dade County, “Waiting List,” 2015, http://www.miamidade.gov/housing/waiting-list.asp (accessed July 10, 2017).

Miami-Dade County, 2017. “Admissions and Continued Occupancy Policy”(ACOP).

a preference.” Unlike the case of individuals with disabilities, admission preference is mentioned in the cases of elderly. For instance, in the ACOP, it states: “Elderly families (see definition in Appendix I) from the Public Housing waiting list receive priority for admission to units or buildings covered by HUD-approved Elderly Designated Housing Plan. When there are insufficient elderly families, PHCD may grant near-elderly families (see definition in Appendix I) priority for admission to these units or buildings or reopen the waiting list to receive applications for this type of elderly unit designation.” 100 Section 8 Waiting List Families participating in Miami-Dade Housing Choice Voucher Program (HCV) are typically low-income families that are expected to pay 30% percent of their monthly income toward rent and utilities and the HCV pays the difference. 101 The HCV and the Moderate Rehabilitation Program maintain separate waiting lists for each of the programs. 102 These waiting lists are administered by the Intake Unit of the Contract and Administration Division (CAD). The reasoning for multiple waiting lists is due to the great number of families and individuals interested in receiving rental assistance. According to the programs website, the first waiting list created in 2008 began with over 72,000 families who applied to the program.103 Owners or landlords advertise their units on the website www.gosection8.com. Additionally, “owners are expected to screen their perspective tenants for sustainability in accordance with fair housing laws.”104 Other programs that qualify under Section 8 are called a Mixed Population Project. A Mixed Population Project is a public housing development that was reserved for elderly and The Metropolitan Center contacted the disabled families at its inception. According to their Applicant Leasing Center (305-638-6464) on descriptions, these units within the Mixed three separate occasions to verify if Population Project who have special accessibility individuals with disabilities are placed in a features for handicapped people are offered first different preference or priority listing for to families with persons that require the public housing and at each attempt, the accessibility features of such units.105 response was the same; the agent stated When potential participants ask how they can there was no preference for individuals with participate, MDHCV describes the process as the disabilities and the waiting lists remained following: “as the vouchers become available, closed. The agent advised the callers to MDHCV pulls applicant names from the waitlist. If a continue checking online for notices that family did not apply when the waitlist was open, announced when the waiting lists would they are not eligible for the HCV program (certain become open.

Ibid.

Miami-Dade County, “Miami-Dade housing Voucher Program At-A-Glance,” http://www.miamidade.gov/housing/library/brochures/housing-voucher.pdf (accessed July 10, 2017).

102 Miami-Dade County, “The Miami-Dade Housing Choice Voucher Program Waiting List, http://www.miamidade.gov/housing/library/reports/waiting-list-fact-sheet.pdf (accessed July 10, 2017).

103 Ibid.

104 Miami-Dade County, “Miami-Dade housing Voucher Program At-A-Glance.”

105 Miami-Dade County, 2017. “Admissions and Continued Occupancy Policy” (ACOP).

100 101

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exceptions apply), but may apply when the list opens again. MDHCV will make a public announcement for the waitlist opening.”106 Public Housing Program Waiting List Assisted Living Facility (ALF)107 PHCD maintains one (1) waiting list for its Public Housing Program, which includes Assisted Living Facility, and the Mixed Finance Developments. This waiting list is administered by the Applicant Leasing Center (ALC), which is a unit of the Asset Management Division (AM) responsible for the operations of the Public Housing Program. For ALF, PHCD provides an admission preference to applicants interested to be housed in an Assisted Living Facilities (ALF) over new admissions from the public housing waiting list.

The applicant must meet the ALF Admissions Criteria at the time of eligibility screening. The eligibilities include: “Medicaid and Medicare eligible; agree to pay the cost of ALF services and rent not to exceed the family’s monthly income. If the family members receive Optional State Supplement (OSS) income, the OSS check must be endorsed to the facility and a personal needs allowance (PNA) will be provided on a monthly basis; be able to perform the activities of daily living with supervision or assistance, if necessary; be at risk of being prematurely placed in a nursing home; not require 24hour nursing supervision or mental healthcare; not be bedridden; Not have a history of violent behavior that poses a risk to the health and safety of others; and be free from communicable disease.”108 In the case of ALF, referrals are accepted since according to PHCD, “The ALF admission criteria may often cause limitations in filling ALF units, as there may not be sufficient qualified applicants in the waiting list.

As such, referrals may be accepted, should the waiting list be exhausted of ALF qualified applicants.” In the cases of transfers to ALFs, “requests of transfers to the ALF of existing interested and qualified residents of Public Housing developments are subject to the provisions under Chapter V – Transfer Policy. Residents requesting transfers to an ALF will receive priority over applicants requesting to reside in an ALF.” ALF also applies to the specific cases of veterans. According to the ACOP: “PHCD, at its sole discretion, will provide an admission preference over new admissions to applicants whose head or co-head are eligible veterans. A veteran is a person who had at least 180 days of regular active duties and was honorably discharged or released or had at least 90 days of active duty service, of which at least one (1) day of service was in a war conflict and was honorably discharged or released, or served in a war conflict and was awarded a Purple Heart or became disabled, regardless of completion of days of active duty. The veteran status extends to spouses, widows, widowers and parents of the military killed during a time of war.” 109

Miami-Dade County, “Miami-Dade housing Voucher Program At-A-Glance.”

Miami-Dade County, 2017. “Admissions and Continued Occupancy Policy” (ACOP).

108 Ibid.

109 Under the selected preferences in their Admissions and Continued Occupancy Policy (ACOP) 106 107

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Eligibility Interview According to Miami-Dade County’s ACOP, the following goals are used to filter individuals in the waiting list- “at least 40% of new admissions must be extremely low-income (30% of area median income or below); the remaining 60% of new admissions can be up to the low-income level (80% of the area median income).” When an applicant reaches the top of the waiting list, the applicant’s information will be verified, including applicable admission preference, to determine applicant’s eligibility. For individuals with a disability, the housing eligibility interview will verify the applicant’s documentation.

These documents include, “Disability- Picture ID, such as a driver’s license, doctors contact information.”110 The Public Housing Department also recommends individuals with disabilities to “…bring verification of medical expenses or anticipated expenses such as, health insurance payments, on-going prescriptions, doctor’s visits, payback agreements on hospital bills, etc.” 111 These are the main requirements that directly affect an individual with disabilities in the process of completing the housing application. Applications are withdrawn if an applicant fails to attend a scheduled interview. An applicant failing to provide applicable verification of admission preference will not be eligible for that preference and will be restored to the general waiting list. 112 Reasonable Accommodations Applicant families who refused the housing offer due to a disability may request a reasonable accommodation in accordance with the Reasonable Accommodation Policies and Procedures (Appendix IV of this ACOP). Upon approval of the reasonable accommodation request, the applicant’s family shall be returned to the applicant’s former waiting list position. 113 PHCD will make an exception for those people with a disability requiring a reasonable accommodation as described in PHCD’s Reasonable Accommodation Policy and Procedures, Appendix IV of this ACOP. 114  Uniform Federal Accessibility Standards (UFAS): Also known as the units with accessible features. According to the PHA strategic plan, “applicants with wheelchairs will be offered Uniform Federal Accessibility Standards (UFAS) units or units with accessible features.

Priority is given to transferees.”115 a) In the selection of a family for a UFAS unit or a unit with accessible features, PHCD will give preference to current residents and then to applicant families that include a person with disabilities who can benefit from the unit features. 116 b) Eligible applicants will receive a letter providing a housing offer; this housing offer must be accepted or refused within three (3) business days. The acceptance or refusal of the housing offer must be brought in person to the Applicant Leasing Center. 117 Ibid.

Miami-Dade County, Waiting List, http://www.miamidade.gov/housing/waiting-list.asp (accessed July 10, 2017).

112 Miami-Dade County, 2016. “Admissions and Continued Occupancy Policy.”

113 Ibíd.

114 Ibíd.

115 Miami-Dade County by and through Public Housing and Community Development, 5-Year Plan for Fiscal Years 2015-2020; Annual Plan for Fiscal Year (FY) 2016-2017. https://www.miamidade.gov/housing/library/reports/2016-plans/pha-plan.pdf (accessed March 23, 2017).

116 Under the selected preferences in their Admissions and Continued Occupancy Policy (ACOP) 117 Under the selected preferences in their Admissions and Continued Occupancy Policy (ACOP) 110 111

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c) Transfers of residents with disabilities and placement of applicants with disabilities requiring units complying with UFAS or units with accessible features (as defined in Appendix I of this ACOP), will be approved in accordance with the Reasonable Accommodation Policies and Procedures (Appendix IV of this ACOP), through PHCD. 118 a. When an accessible unit becomes available, the unit will first be offered to a current resident with disabilities in the same development who requires the accessibility features of the vacant accessible unit and who is otherwise occupying a unit not having those features. b. If there are no current residents in the same development who require the accessibility features, then the vacant accessible unit will be offered to a resident with disabilities from another development that requires the accessibility features. c. If there are no current residents who require the accessibility features of the vacant accessible unit, then the vacant accessible unit will be offered to the next eligible qualified applicant with disabilities on the waiting list.

According to the instructions provided in the ACOP, upon receipt of a housing offer letter, an applicant can contact the AMP administrator or designee to schedule an appointment to view the offered unit.  The applicant must accept or refuse the offered unit after it has being shown and must notify the Applicant Leasing Center (ALC) in person within the timeframe specified in the housing offer letter.  If the applicant accepts the offered unit, ALC will complete the process of eligibility screening and forward documentation to the AMP Administrator or designee. Once the AMP Administrator or designee receives the documentation from ALC, the AMP administrator or designee will execute a lease with the applicant. If the applicant refuses the unit, the applicant must provide a signed statement explaining the reason for the refusal. ALC is then responsible for making the “good cause” determination.

A good cause for rejection could but if, “the unit is inappropriate for the applicant’s disability, or the family does not need the accessible features in the unit offered and does not want to be subject to the 30-day notice to move.”119 According to their written methods, if a good cause is verified for the refusal of the offer, the individual is not removed from the waiting list, instead, the applicant will receive another housing offer upon unit availability. These regulations can directly affect any individual or family who needs specific accommodations and whose requests are not offered immediately.

Transfer PHCD may encounter situations where it is necessary to transfer a resident to another unit. A transfer between public housing developments is not considered a move-out. Under certain circumstances, residents may be transferred to accommodate a disability. All transfers must be approved by the division director or designee, before the Applicant Leasing Center (ALC) admits them into the transfer waiting list. Residents who seek reimbursement must provide proof of their out-of-pocket expenses to PHCD, i.e. receipts. The division director or designee must approve the expense. Project-based public 118 119

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Under the selected preferences in their Admissions and Continued Occupancy Policy (ACOP) Miami-Dade County, “Admissions and Continued Occupancy Policy.”

housing programs are not transferable from state to state. Limitations of transfers may be an impediment to families and individuals with disabilities.

Live-in Aide If needed as a reasonable accommodation request, PHCD must approve a live-in aide. A live-in aide is considered a household member, not a family member. The income of the live-in aide is not counted as part of the family’s annual income. Any individual selected by the family member with disability to be the live-in aide must comply with the following criteria: 

The physician verifying the need for a live-in aide must also verify that the live-in aide is qualified to provide the appropriate services.



The live-in aide must live in the unit solely to care for the disabled individual.



The live-in aide does not qualify for continued occupancy as a remaining family member and does not have any rights to the unit.



The live-in aide must not have been part of the household prior to the family receiving housing assistance or thereafter.



The live-in aide, head of household, and family members must maintain separate finances.

Determining Rent Payment The rent paid by individuals under public housing programs is referred to as the Total Tenant Payment (TTP). The amount is based on the family's anticipated gross annual income without deductions, if any.

HUD regulations allow HAs to exclude the following allowances from annual income: $480 for each dependent; $400 for any elderly family, or a person with a disability; and some medical deductions for families headed by an elderly person or a person with disabilities. Based on the application, the HA representative will determine if any of the allowable deductions should be subtracted from the individual’s annual income. Annual income is the anticipated total income from all sources received from the family head and spouse, and each additional member of the family 18 years of age or older. 120 The formula used in determining the TTP is the highest of the following, rounded to the nearest dollar: 

The total tenant payment (TTP) represents the minimum amount a family must contribute toward rent and utilities.



To calculate TTP, annual adjusted income and annual (gross) income must be converted to monthly adjusted income and monthly gross income by dividing the annual figure by 12.



The TTP is the greater of: 30% monthly adjusted income, 10% of monthly gross income or the $50 minimum rent established by THA.

In most cases the TTP is the 30% Adjusted Annual Income $12,000.00 Divide it by 12 (months) = $1,000.00 120

Department of Housing and Urban Development, “HUD’s Public housing Program,” https://portal.hud.gov/hudportal/HUD?src=/topics/rental_assistance/phprog (accessed July 10, 2017).

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Multiply $830 by 30% =$300.00 Three hundred dollars is the minimum amount of rent the family pays in this case. Unfortunately, there is no data provided by Miami Dade County on the amounts of TTP individuals pay.

49

Miami-Dade County Public Housing and Community Development Agency Proposed Documents, Plans and Policies PHCD relies on planning documents and policies that seek to address the needs for housing assistance and assess resources and strategies to address these needs. The research team reviewed all recent available documents and the following section presents a brief outline of their purpose and main points, with a specific focus on any relevant attempts to account for and address the needs of individuals with intellectual and developmental disabilities.

A. Five Year Plan for Fiscal Years (2015-2020): Annual Plan for Fiscal Year (FY) 2016-2017 PHCD submits the “5 Year and Annual PHA Plans” to provide a ready source to locate basic PHA policies, rules, and requirements concerning the PHA’s operations, programs, and services and informs HUD families served by the PHA. The document reveals the PHA’s mission, goals and objectives for serving the needs of individuals with disabilities.

Findings: o

The mission of PHA’s mission for serving the county’s needs does not specifically mention the needs of individuals with disabilities. 121

o

Goals and Objectives, Goal 3: Increase Assisted Housing Choices, individuals with disabilities or their needs are not mentioned.

o

Goals and Objectives, Promoting Partnerships with Job Training and Placement Organization, section 1(f) states “Identify supportive services to increase independence for the elderly or families with disabilities.”

o

Goals and Objectives, letter D, Ensure Equal Opportunity in Housing for all Americans, affirms the continued implementation of Section 504, Americans with Disability Act (ADA), the Fair Housing Act, and the Voluntary Compliance Agreement (VCA) that will result in 459 Uniform Federal Accessibility Standards (UFAS) units.

o

Under Progress Reports, the document does not mention increased assisted housing choices for individuals with disabilities.122

o

Under Progress Reports, PHA reported collecting data from the current waiting lists via post-application questionnaire to gauge clients’ disability related needs. (page 6 of 8) o

Under Strategy for Addressing Housing Needs and section Shortage of Affordable Housing for All Eligible Populations, PHCD does not mention any specific comments or strategies in ensuring accessible and affordable housing for individuals with disabilities of any kind.123

Department of Housing and Urban Development, Office of Public and Indian Housing, 5-Year PHA Plan (for All PHAs), 2016, 2 of 8, http://www.miamidade.gov/housing/library/reports/2016-plans/pha-plan.pdf (accessed July 10, 2017).

122 Department of Housing and Urban Development, Office of Public and Indian Housing, 5-Year PHA Plan (for All PHAs), 5 of 8.

123 Department of Housing and Urban Development, Office of Public and Indian Housing, 5-Year PHA Plan (for All PHAs), 3 of 26.

121

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B. The Admissions and Continued Occupancy Policy (ACOP) establishes written policies used by the PHCD for all properties owned by Miami-Dade County. It is written in accordance with HUD regulations and addresses matters not covered under the HUD regulations that are instead left to local discretion for the Public Housing Program, as established by the United States Housing Act of 1937. The regulations that govern these programs are documented in Title 24 of the Code of Federal Regulations (CFR) Parts 5, 960, 966 and other applicable regulations promulgated by the HUD.124 Findings: o

Similarly to the 5 Year Plan (2015-2020), this report continuously does not specify what type of disability they are referring to.

o

In addition, the lease does not have space to describe the disability of the individual. 125

o

The lack of specification on types of disabilities suggests lack of distinction between elderly and individuals with disabilities.

o

In addition, under Waiting List Management the text does not specify how individuals with disability are ranked compared to other individuals. 126

o

In the section, Fair Housing and Equal Opportunity, the report does not specify the different forms of disabilities.127

o

In the Assisted Living Facilities section, individuals accepted must “not require 24-hour nursing supervision or mental healthcare.” 128

C. Section 8 Administrative Plan The Section 8 Administrative Plan is a supporting document to the previously mentioned Miami-Dade Public Housing and Community Development Plan. The Section 8 Administrative Plan establishes written policies in accordance with USHUD regulations and in matters not covered under the regulations, but left to local discretion.129 It contains PHCD's internal policies for the Section 8 Housing Choice Voucher, Section 8 Project-based, Moderate Rehabilitation, Section 8 Homeownership, and other USHUD special allocation programs.130

Miami-Dade County, 2017. “Admissions and Continued Occupancy Policy.”

Miami-Dade County, Public Housing and Community Development, Conventional Public Housing Dwelling Lease, http://www.miamidade.gov/housing/library/reports/2015-proposed-plans/SM/public-housing-dwellinglease-proposed.pdf (accessed July 10, 2017).

126 Miami-Dade County, “Admissions and Continued Occupancy Policy,” 12.

127 Miami-Dade County, “Admissions and Continued Occupancy Policy,” 96.

128 Miami-Dade County, “Admissions and Continued Occupancy Policy,” 29.

129 Miami-Dade County, “Public housing and Community Development Policies and Plans,” 2017, http://www.miamidade.gov/housing/policies-and-plans.asp (accessed July 10, 2017).

130 Ibid.

124 125

51

D. Community Development (CD) Policies and Procedures Manual The Department of Public Housing and Community Development (PHCD) provides a Policies and Procedures (PnP) Manual to assist CD Staff and sub-recipients of CDBG, HOME, ESG and other federal funded programs in the management of projects. The manual outlines some of the key tasks that should be conducted when administering Federal funds.

South Florida Nonprofit Organization with Housing Services The high demand for housing assistance and the scarcity of resources available to public housing agencies, has placed a burden on the nonprofit sector to address many of the unmet needs. The following are examples with individual contributions to improving the housing demands for individuals with disabilities.

Center for Independent Living of South Florida For instance, the Center for Independent Living of South Florida helps with basic information, local providers and resources to help promote independent living for individuals with disabilities. Families or individuals meet with Independent Living Advocates who assist in developing an Independent Living Plan.131 The Center provides assistance in developing what they call an “Independent Living Plan” to identify and address goals that promote independence for individuals with disabilities. The plan assists by evaluating needs, addressing resources, and creating timelines to begin or advance the individual’s desire to move toward independence. Specifically, the plan reviews the housing, transportation, medical services, accessibility, assistive technology, employment, education, benefits and resources, recreation, social needs as well as anything else that the participant chooses to address. Overall, the Center explains that the process towards the ultimate goal of independence is accomplished when the “individual receives the satisfaction of accomplishing their own goals.” 132 The WOW Center The goal of The WOW Center is to provide quality programs that support individuals with developmental disabilities to lead meaningful and productive lives. The WOW Center’s activities are focused on “exploring their potential, develop a sense of community and pursue independence and jobs if able.” To accomplish this, the WOW Center focuses on improving individuals’ adaptive skills. Such skills are required to live independently, as well as to become integral components of the community. Areas of focus include, “communications, self-care, home living, social skills, health and safety, self-direction, functional academics, employment and leisure.” 133 To attain full independence, the agency offers the several education programs to its beneficiaries such as, “cleaning, cooking, laundry, and other daily independent tasks.” In addition, the center helps the process of employment through “job coaching, job development, job matching, towards the future and investment of each individual disabled person.” Overall, “the job skills they focus are interpersonal and leadership skills, problem solving, vocational and social skills and employability skills.” In addition, the WOW Center partners with local partners to provide employment to these individuals with disabilities Center for Independent Living of South Florida, “Core Services,” http://www.cilsf.org/services/ (accessed July 10, 2017).

132 Ibid.

133 The WOW Center, “Supported Employment,” http://wowcentermiami.org/program/supported-employment (accessed July 10, 2017).

131

52

these include Publix Supermarkets, Baptist Health South Florida, Taco Bell, Los Ranchos Restaurants, Greenday Gardens, Johnny Rockets, and Charcoals Latin Grill at Dolphin Mall. 134 SCLAD (Spinal Cord Living-Assistance Development, Inc.) According to their annual reports, SCLAD’s mission is to, “facilitate independent living, economic selfsufficiency and full community integration for persons with disabilities by providing and coordinating support services.”135 These services can include generating employment and vocational opportunities, affordable barrier free housing and more. As a non-profit 501(c) 3 Florida Corporation, SCALD formed in 1985 by a group of spinal cord injured friends. The organization’s goal is “to make available to individuals with disabilities of all ages, through programs and other community resources, the necessary tools to achieve the highest degree of independence possible within their natural environment, with their families and in their community.” As stated by the founders, their goal was to “…build and manage accessible, affordable housing, and coordinate individualized services for persons who, like them, had physical disabilities. They felt that proper accommodations and reliable personal care would make them free to become more engaged in their communities, and have a better chance of achieving independence and becoming self-sufficient.” 136 Today, SCLAD is focused on creating housing initiatives aimed at making barrier-free housing available and affordable to individuals with disabilities and their families. As stated in their website, “SCLAD is a Community Housing Development Organization (CHDO), certified as such by the City of Hialeah, MiamiDade County and the Florida Housing Finance Corporation.” 137 The organization reported that as of January 2014 it had developed 76 barrier-free units, sold twenty four condominiums and was actively managing fifty two rental units. Their first major project was an affordable housing project, Park Place, located in Hialeah, Florida, inaugurated in 1998. The facility is a 34-unit, one- and two-bedroom rental complex. In addition to managing their own projects, SCLAD also “works with housing developers to assist them in complying with Fair Housing Act, accessibility requirements. This helps to ensure that housing projects are constructed barrier-free and with the number of accessible units required by law.”138 The Miami Coalition of the Homeless In January 2016, the Miami Coalition for the Homeless officially announced the re-naming of the organization to Miami Homes For All, Inc. (MHFA). 139 The mission of the organization is to, “create formal alliances to breakdown silos within the homeless sector and support all individuals who experience homelessness at any point in their lives.” 140 Today, the organization works towards the development of rental housing affordable to extremely low-income households as part of a mixedincome development project. In order to spread advocacy throughout Miami-Dade County, the organization hosted the Homes for All Housing Summit in 2015. As a direct result of this Summit, the Ibid.

SCLAD, “About SCLAD,” http://www.sclad.org/about/ (accessed July 10, 2017).

136 Ibid.

137 SCLAD, “Housing,” http://www.sclad.org/causes/housing-2/ (accessed July 10, 2017).

138 Ibid.

139 Miami Homes for All, “Our History: Our Progress,” http://www.miamihomesforall.org/about-us.html (accessed July 10, 2017).

140 Ibid.

134 135

53

speakers and attendees created policy priorities focused on creating more affordable housing. In effect, “these policy priorities were then presented before the County Commissioners at the Economic Prosperity Committee meeting May 14th.” 141 In partnership with other agencies of Miami-Dade County, MHFA is aiming to strategically reduce homelessness by developing and implementing programs that target these individuals as the primary beneficiaries. 142 Carrfour Supportive Housing Carrfour is a nonprofit organization established in 1993 by the Homeless Committee of the Greater Miami Chamber of Commerce to focus on the development, operation and management of “…housing communities for individuals and families in need through a unique approach combining affordable housing with comprehensive, on-site supportive services.” 143 Carrfour reports that since its inception they have supplied homes for more than 10,000 formerly homeless men, women and children. 144 Their eligibility requirements specifically mention individuals with a disability. The eligibility requirements also mention that, “Applicant must have a disability to apply to live in certain communities.” 145 One of the their specific community projects, called Rivermont House, located at 789 NW 13th Avenue in Miami, consists of 76 affordable housing units for former homeless individuals including 36 units serving disabled persons and 15 units serving elderly residents. 146 The community also includes amenities such as a computer lab, fitness center, library, pool table room and outdoor courtyard. 147

Miami Homes for All, “Affordable Housing Initiative,” http://www.miamihomesforall.org/affordable-housinginitiative.html (accessed July 10, 2017).

142 Miami Homes for All, “Chronic Homeless Study,” http://www.miamihomesforall.org/chronichomelessness.html 143 Carrfour Supportive Housing, Carrfour Supportive Housing, http://carrfour.org/ (accessed July 10, 2017).

144 Ibid.

145 Ibíd.

146 Carrfour Supportive Housing, “Community,” http://carrfour.org/communities/page/3/ (accessed July 10, 2017).

147 Ibid.

141

54

The Housing Challenges There are approximately 120,000 individuals ages 18 to 64 in Miami-Dade County who have a disability, and approximately 68,000 in the same age group with a self-care difficulty. 148 The characteristics of these individuals, including labor force participation and income, as well as the issue of housing affordability may help explain the difficulties in housing accommodations for them and the substantial unmet need.

Cost Overall, the cost of living in Miami-Dade is one of the highest in the nation. According to the Census Bureau and U.S. Department of Housing and Urban Development, Miami is among the top 25 largest metropolitan areas leading in the area of cost-burdened residence. The survey indicates, “Miamians spend 27 percent of their income on rent, a percentage that tops every other major metro in the United States.”149 Given the employment and earnings of individuals with disabilities, the burden of housing costs for individuals with physical and mental disabilities is even greater. According to the Priced Out results for 2014, “the average annual income of a single individual receiving SSI payments was $8,995, about 23% below the federal poverty level for the year.” 150 The high levels of cost burdened individuals in Miami-Dade make the goal for independent living without the assistance of public housing extremely difficult. Furthermore, even with their acceptance in any of the qualifying public housing programs, individuals with disability are still required in Miami-Dade County to pay Total Tenant Payment (TTP).

Lack of employment According to the Bureau of Labor Statistics, only 20.1 percent of people with disabilities in the U.S. were participating in the labor force in 2016.151 In contrast, 9.0% were unemployed, meaning only 11.1%t of the population with disabilities was employed. 152 Statistics for Miami-Dade show that only 16.4% of individuals with disability are in the labor force, and the annual median earnings for that population are only $19,409.

The low labor participation rate and income affect the potential for independence of individuals with disabilities and place greater demand on the Public Housing Department in Miami-Dade County.

According to the Autism Society, “35 percent of young adults (ages 19-23) with autism have not had a

U.S. Census Bureau, “Disability Characteristics: 2011-2015.” American FactFinder, https://factfinder.census.gov/faces/tableservices/jsf/pages/productview.xhtml? pid=ACS_15_5YR_S1810&prodType=table (accessed July 10, 2017).

149 Jerry Iannelli, “Miamians Spend Nation’s Highest Share of Income on Rent, Census Data Shows,” Miami New Times, January 9, 2017, http://www.miaminewtimes.com/news/miamians-spend-nations-highest-share-ofincome-on-rent-census-data-shows-9050966 (accessed July 10, 2017).

150 Priced Out, 2014: The Housing Crisis for People with Disabilities.

151 The Bureau of Labor Statistics considers a person to have a disability if he/she has at least one of the following conditions: is deaf or has serious difficulty hearing; is blind or has serious difficulty seeing even when wearing glasses; has serious difficulty concentrating, remembering, or making decisions because of a physical, mental, or emotional condition; has serious difficulty walking or climbing stairs; has difficulty dressing or bathing; or has difficulty doing errands alone such as visiting a doctor's office or shopping because of a physical, mental, or emotional condition. Updated population controls are introduced annually with the release of January data.

152 U.S. Department of Labor, Bureau of Labor Statistics, “Economic News Release: Table A-6. Employment Status of the Civilian Population by Sex, Age, and Disability Status, Not Seasonally Adjusted,” July 7, 2017 https://www.bls.gov/news.release/empsit.t06.htm (accessed July 10, 2017).

148

55

job or received postgraduate education after leaving high school.” 153 When asked how much they are able to contribute per month to these services, nearly half said they were able to pay less than $500 per month and 85% said they were able to contribute less than $1,000 monthly. 154 Autism Speaks concluded that there is a “drastic need for funding for these families to help connect the individuals with the housing and residential support services that will allow them to thrive as adults.” 155 Transportation Availability of transportation is crucial for housing and employment. Housing alternatives that have no or minimal access to public transportation are not convenient or adequate for individuals with disabilities or their caregivers. According to Miami-Dade County Public Transit, buses with wheelchair lifts and low-floor buses are currently available on all routes. Signs and accessible space decals throughout the bus indicate that customers with disabilities have seating priority within these areas.

Most bus routes connect with Metrorail. According to their written procedures, bus operators or automated announcers loudly state transfer points with fixed routes, major intersection and destination points, any stop upon request, and intervals along a route in order to orient customers who are blind, have low vision or have other disabilities to their location.

In comparison to Miami-Dade Transit buses, the Metrorail and Metromover are more limiting as an option for individuals with disabilities. Miami-Dade County has 23 Metrorail stations and only ten (Dadeland South, Dadeland North, South Miami, Douglas Road, Brickell, Government Center, Civic Center, Dr. Martin Luther King, Jr. Plaza, Tri-Rail and Okeechobee) of them are readily accessible for individuals with wheelchairs. The ten stations with wheelchair accessibility are in accordance with the Department of Transportation's Americans with Disabilities Act (DOT ADA) Key Station rules. 156 In comparison to the Metrorail’s accessibility rate (43%), the Metromover has greater restrictions in serving the needs of individuals with wheelchair accommodations. Based on Miami-Dade County’s public announcement, only 9.5% of Metromover cars are readily accessible and usable by individuals in wheelchairs.157 Only the Government Center and Brickell are in accordance with the Department of Transportation's Americans with Disabilities Act (DOT ADA) Key Station rules. 158 Accessibility to wheelchair mobility is one indicator of what makes public transportation useful for individuals with disabilities, however, the cost of public transportation is a separate indicator. The transportation cost in Miami-Dade for the use of the Metrorail or Metrobus is half the regular fare with a discount-fare EASY Card for individuals with disabilities. The total becomes $1.10 per trip, or with a 1Day pass for $2.80, a 7-Day pass for $14.60 or a 1-Month pass for $56.25 before even boarding a bus or train.159 In addition, Metrorail riders with a state-issued parking permit or license plate for people with disabilities may park free in spaces designated for disabled riders.

Autism Society, “Facts and Statistics.” http://www.autism-society.org/what-is/facts-and-statistics/ Autism Speaks, “National Housing and Residential Supports Survey.”

155 Autism Speaks, “National Housing and Residential Supports Survey.”

156 Miami-Dade County, “Metrorail,” 2017, http://www.miamidade.gov/transit/metrorail.asp (accessed July 10, 2017).

157 Miami-Dade County, “Metrorail.”

158 Ibid.

159 Miami-Dade County, “Metrobus,” http://www.miamidade.gov/transit/metrobus.asp (accessed July 10, 2017).

153 154

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In order to answer to the needs of those individuals with disabilities that cannot ride the Metrobus, Metrorail or Metromover, Miami-Dade County provides Special Transportation Service (STS) to individuals with a physical, mental or intellectual disability. 160 Individuals with a disability that prevents them from riding public transportation independently can apply to be certified for the STS program. STS operates twenty-four hours a day, seven days a week, including most holidays. The STS services can be used to schedule trips to medical appointments, school, work, shopping, and business; additionally, recreational appointment can qualify. Miami-Dade County Public Transit describes its services as “Airconditioned minivans, small buses, lift-equipped vans, and sedans transport passengers with disabilities safely in a clean, smoke-free environment.” In order to schedule an STS pick up, the individual or their caregiver must place the reservation one to seven days in advance. Reservation can be done online or by phone. The automated line also provides the option to report when STS is late more than thirty minutes.

Passengers can request auxiliary aids and services for communications in alternate formats (audiotape, Braille or computer disk) five days in advance. The cost of STS services is of $3.50 per one-way trip. In addition, “STS offers shared-ride, door-to-door travel in accessible vehicles throughout most of MiamiDade County, in some parts of South Broward County, and in the Monroe County Upper to Middle Keys.”161 One companion (including children, regardless of age) or Personal Care Attendant (PCA) may ride with a certified passenger, however, both are picked up and dropped off at the same address. In addition, the individual must pay the fee of $3.50 per one-way trip. However, PCA are not charged a fare. In comparison, the cost of STS compared to Metrorail, Metromover, and Metrobus is higher for both the caregiver and the individual with disability. In addition, based on the limited accessibility of Metrorail and Metromover cars, the demand for STS services continues to rise.

Country Comparison: Broward, Palm Beach, Hillsborough, Orange, and Pinellas The research team reviewed services that are available to disabled individuals in other Florida counties of similar size (Broward, Palm Beach, Hillsborough, Orange, and Pinellas). The purpose of the comparison is to assess if there are any differences that may point to the need for enhancing services in the Miami-Dade area. Where possible, we delineate not only the presence or absence of individual services but also identify models that include comprehensive “one stop” service provision for individuals with intellectual disabilities.

Broward The Broward County Housing Authority (BCHA) is dedicated to creating, providing and increasing high quality housing opportunities to Broward County residents through effective and responsive management and responsible stewardship of public and private funds. 162 According to their Five-Year Plan “there is a deficit of approximately 45,000 affordable rental units in the area for renters whose total household income is 50% or below of Area Median Income (AMI).” 163 According to their annual Miami-Dade County, “Special Transportation Services (STS), https://www.miamidade.gov/transit/specialtransportation.asp (accessed July 10, 2017).

161 Ibid.

162 Broward County Housing Authority, Broward County Housing Authority, http://www.bchafl.org/Default.aspx (accessed July 10, 2017).

163 Broward County Housing Authority, “Draft PHA 5-Year and Annual Plan 2015-2020,” 2015, Lauderdale Lakes, FL, http://www.bchafl.org/Pages/Communications_and_Public_Affairs/Public_Documents.aspx (accessed July 10, 2017).

160

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plan, “Approximately 60% of all renter households in his jurisdiction are rent burdened meaning that the family is spending more than 50% of income on housing costs including utilities. The two-bedroom housing wage is approximately $24.23.” Using the data in Out of Reach’s annual report, BCHA reports that “the average wage for a renter in this area is $15.35. The deficit of affordable units disproportionately affects elderly and disabled residents on fixed incomes. The aggregate household income was expected to rise in the 25-34 range. This incremental growth has produced a corresponding need for affordable housing.”164 In order to address these high demands, specifically those effecting individuals with disabilities, BCHA aims to modify certain policies in their PHA Five Year Plan. For example, under the administrative plan revisions of Broward County, the suggested new policy will state that the PHA will use the following local preferences of: “(1) Preference for Elderly and Disabled… (2) Add- Preference will be given to Broward county resident. The waiting list is ordered by preference and a number from the lottery draw.” In addition, under goals and objectives, BCHA mentions to “continue to identify and analyze affordable housing opportunities that currently exist, based on market conditions or opportunities that may remain within the BCHA portfolio of properties, to increase the availability of quality affordable housing.” A similar mission and objective written in the PHA Five Year Plan for Miami-Dade County’s goals.

Unfortunately, Broward’s PHA Five Year Plan does not mention individuals with disabilities specifically when describing goal three of increasing assisted housing choices. The only direct mention of benefits for individuals with disabilities is found under objective two, which states that Broward County will “work to improve access to supportive services and economic opportunity to BCHA.” Broward aims to deliver this goal by developing “[an] assessment survey to determine the services that are needed and wanted by residents” as well as determining “[the] need for onsite services programs aimed at improving the quality of life of our senior and disabled residents.” 165 However, in comparison to other counties, “BCHA is the first housing authority in Florida to convert an entire Public Housing portfolio to Project Based Rental Assistance via the Rental Assistance Demonstration Program (RAD).” Consequently, “the conversion provides ‘Choice Mobility’ so that after two years, families may have an opportunity to move to the HCV program, depending upon funding availability, which offers a variety of options in renting or possible homeownership.” 166

Ibid.

Ibid.

166 Ibid.

164 165

58

TTP - Broward County Area

Elderly, No Children, Disabled

Elderly, with Children, Disabled

Non-elderly, No Children, Disabled

Non-Elderly, with Children, Disabled

Broward County

$286

$417

$307

$336

Florida Statewide

$257

$404

$261

$337

Palm Beach The Palm Beach County Housing Authority (PBCHA) was created under Chapter 421 of the Florida Statute, in 1969, with the objective of providing affordable housing to low-income families. Its mission is “to provide decent, affordable housing to low and moderate-income families, elderly, and disabled individuals who strive for self-sufficiency and/or independent living.” 167 PBCHA’s commitment is “to improve the quality of life of residents and participants through key partnerships with stakeholders that share the same vision for affordable housing, self-sufficiency, and independent living.” 168 Today, the agency administers both the public housing and Section 8 Housing Voucher Program. Overall, PBCHA manages two projects which contain 492 affordable rental units. 169 It also administers 2,595 Section 8 housing vouchers. In comparison, the PBCHA manages 16% of Public Housing units and 84% of Section 8 housing vouchers. However, overall, the PBCHA has a smaller proportion of public housing units than the average housing authority in Florida. Nonetheless, PBCHA has a large Section 8 Vouchers Program that is larger than the average housing authority in Florida. Unfortunately, the PHA Housing Authority Annual and Five Year Plans for PBCHA are not available online. However, PBCHA does provide the Basic Financial Statements and Supplemental Information report. The following information is provided by the financial audit report: 170 

The assets of the Authority exceeded the liabilities as of September 30, 2015, by $15,850,354 net possession.



The Authority’s cash balances as of Sept 30, 2015, were $2,508,403, representing a decrease of $2,408,435.



The Authority earned revenue directly from the HUD of $24,300,025 which includes funds for capital asset activities.



Public housing has maintained occupancy of 97% for the fiscal year.

In a similar manner as the Miami-Dade County PHCD, the first step in receiving public housing assistance is to qualify for placement on the public housing waiting list. In order to qualify, PBCHA requires everyone to meet certain eligibility criteria. PBCHA states on its website a local preference of (1) At least one member of the household is currently working a minimum of 30 hours per week for one full year or more, or (2) Head and spouse, or sole members is a person age 62 or older, or is a person with Palm Beach County Housing Authority, “Quality Homes. Good Journey,” http://www.pbchafl.org/default.aspx (accessed July 10, 2017).

168 Ibid.

169 Palm Beach County Housing Authority Basic Financial Statements and Supplemental Information, 2015, http://www.pbchafl.org/docs/pbcha-audited%20financials%20fye%202015.pdf (accessed July 10, 2017).

170 Ibid.

167

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disabilities.171 Applicants can refuse one unit with good cause. After a second unit refusal, the application will be removed from the waiting list and applicant must reapply when the waiting list reopens. 172 Special Programs In addition to the efforts of the PBCHA office, the Palm Beach County’s Department of Economic Sustainability (DES) announced the availability of $4,961,065 in State Housing Initiatives Partnership (SHIP) funds through the Robert E. Pinchuck Memorial Affordable Housing Trust Fund for fiscal year 2015-2016.173 The funds are designed for a specified targeted groups that includes persons with developmental disabilities, disabled persons, veterans, and the elderly above all other eligible income groups. The SHIP program is subject to funding availability, however, once all funding is released, other interested individuals will be placed on a waiting list for up to 120 days. According to the terms of the funding, the grant requires that 20% of its total annual award is designated for individuals with special needs. The classification of special needs is defined by the Florida Statutes specifically §§420.0004, § 393.063, and § 420.004(7) dealing with persons with special needs, developmental disabilities and disabling conditions.

The distribution of the funds are as follows: 174 

$1,662,013 Second Mortgages (Purchase Assistance with/without Rehabilitation)



$1,062,014 Veterans Homeownership and Preservation Program



$780,866 Housing Rehabilitation (Owner Occupied Rehabilitation)



$462,013 Developer Rental Assistance



$250,000 Homeless Prevention (Rapid Rental Re-Housing Assistance)



$248,053 Project Delivery

Palm Beach County Housing Authority, “Housing Choice Voucher Program,” http://www.pbchafl.org/5housing-choice-voucher (accessed July 10, 2017).

172 Ibid.

173 Palm Beach County Housing Authority, Department of Economic Sustainability, Notice of Funding Availability, 2016, http://www.bellegladegov.com/files/NOFA%20-%20%202015%20-%202016%20FUNDING.pdf (accessed July 10, 2017).

174 Ibid.

171

60



$496,106 Program Administration

TTP - Palm Beach County Area

Elderly, No Children, Disabled

Elderly, with Children, Disabled

Non-elderly, No Children, Disabled

Non-Elderly, with Children, Disabled

Palm Beach County

$273

$531

$279

$430

Florida Statewide

$257

$404

$261

$337

Hillsborough The Tampa Housing Authority (THA) created in 1939, provides housing opportunities to more than 21,000 residents in the Tampa Bay area. According to their reports, THA “currently administers 3,026 public housing units and 9,403 Housing Choice Vouchers (Section 8).” 175 In 2005, the agency of THA received a “High Performer” status for the first time from the US Department of Housing and Urban Development (HUD).176 The Tampa Housing Authority is the administrator of Public Housing and the Housing Choice Voucher Programs for the Hillsborough area. According to their website, “of the eighteen developments, two are designated as elderly only and the remaining ones are designated as family developments.” As of today, THA has undertaken the task to improve the physical conditions of its units and to expand the number of affordable housing units. The cost of the first phase was budged as $13,000,000. In order to complete major renovations, some of the work focused on “major system replacements; infrastructure such as heating and plumbing; and kitchen and bathroom upgrades. Major landscaping, wall-to-wall carpet and building enhancements were also included to enable the scattered sites to look and compete with market rate apartment complexes.” Overall, “the Housing Authority is in the process of completing several HOPE VI and tax credit projects that will expand its affordable housing units.”

In comparison to the other counties within the state of Florida, THA is an active practitioner of the Rental Assistance Demonstration (RAD) program, mentioned previously as affecting public housing in Broward County. The RAD program was created to give public housing authorities (PHAs) a powerful tool to preserve and improve public housing properties and address the $26 billion-dollar nationwide backlog of deferred maintenance. RAD allows THA and owners of HUD-assisted properties to convert units to project-based Section 8 programs. The program is designed for individuals who are interested in becoming independent and free of public assistance, however, limited information is given with particular focus to individuals with disabilities.

Similar to other counties in Florida, the waitlist for the Housing Choice Voucher Program (formally Section 8 rental assistance) is the first step in applying for assistance. The waitlist functions under a random lottery system, meaning numbers will be pulled from the list by local preferences. According the agencies website, the preferences are: (1) employed (low-income), (2) attending a school of secondary education, (3) rent burdened, (4) homeless, disabled, or living in substandard conditions. 177 According to their reporting, in 2011, when combining Tampa City and County waitlist for rental assistance, the total Tampa Housing Authority, “Welcome to Tampa Housing Authority,” http://www.thafl.com/ (accessed July 10, 2017).

176 Ibid.

177 Tampa Housing Authority, “Waitlist Information,” http://www.thafl.com/WL/Default.aspx (accessed July 10, 2017).

175

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was approximately 14,000 families. Unfortunately, THA only has 7,495 Housing Choice Vouchers to assist all of Hillsborough County. Hence, “in order to assist someone from the waitlist, someone must leave the Housing Choice Voucher program.” Statistically, the agency calculates that “approximately 40 families a month will leave the program for various reasons.” Once those 40 families leave, then the agency will pull those families that have a local preference from the waitlist. The agency has decided, based on the large demands, that THA will not re-open the waitlist until these lists are exhausted. Per their public announcements, they are unable to establish or announce a date of reopening, however, they expect the time to be between five to seven years. Due to the high levels of demand, THA does not offer any type of emergency rental assistance. Instead, “all families will be assisted from the waitlist by order of the lottery and preferences. If the waitlist is closed, you will not be able to apply for rental assistance.”178 Transportation Similar to the density of Miami-Dade County, Hillsborough County offers individuals with disabilities several options on different modes of transportation. The following are a list of modes of transportations with specific focus on individuals with disabilities. 

TECO Line Streetcar System: Described as a fully accessible streetcar system, this option offers half price fares on single rides and on the one-day unlimited ride fare card for persons with disabilities.179 The discount single ride ticket is $1.25 and the discount one-day ticket unlimited ride fare card is priced at $2.50. 180



HARTPLUS: Persons are eligible for this service if they have physical, cognitive, emotional, and visual or other disabilities that prevent them from using HART fixed route bus system, either permanently or under certain conditions. Bus service is fully accessible to people who use wheelchairs or motorized scooters. All buses have PA systems to announce stops and lighted stop-requested signs. HARTPlus services, available only where HART bus routes operate, are based solely on the applicant's functional ability to use HART buses, not disability alone. The fee is $4 one-way. 181



HARTFlex: HARTFlex is a door-to-door service within defined geographic zones of the county Brandon, South County, Northdale, Town 'N Country, and South Tampa. Reservations or walk-up service is available.”182 According to their website, “walk-up service is available by waiting at a designated HART bus stop, which are marked with a HARTFlex decal. The driver will drop you off at any other designated HART stop along the route in the same direction.” However, for guaranteed service, reservations are needed and should be made two hours to three days in advance of your trip. The cost is $1 per trip; same price for adults, seniors, persons with disabilities and youth.

Ibid City of Tampa, Department of neighborhood Empowerment, Community Affairs Division, Accessible Tampa Guide, by Karen Sinnreich, http://www.tampagov.net/sites/default/files/community-affairs/files/ accessibletampaguide-march-2015.pdf (accessed July 10, 2017).

180 TECO Line Streetcar System, TECO Line Streetcar, http://www.tecolinestreetcar.org/ (accessed July 10, 2017).

181 HART, http://www.gohart.org/Pages/services-van.aspx#paratransit (accessed January 16, 2017).

182 Ibid.

178 179

62



New Freedom Riders: Provides another reliable option for individuals with the disabilities in the Hillsborough, Pinellas, and Pasco counties. Individual must prove they have “a documented disability that functionally limits their ability to fully utilize public transportation services.” 183 Overall, the request transportation are not “available from within the existing coordinated transportation system or available from alternate sources.” For reservation request, the individual must call within 48 hours and up to 14 days in advance.

Non-profit Sector Hillsborough County is also home to the Center for Independent Living, a nonprofit 501(c) (3) organization established in 1978 who carries the mission of promoting independence through empowering persons with disabilities and improving the communities in which they live. Self-reliance is one of sixteen Centers for Independent Living statewide. They provide services to both children and adults with disabilities (regardless of age and type of disability) and assist persons with disabilities in identifying and overcoming barriers to independence. Overall, the organization provides services to “any individual with a disability living in Hillsborough County” and are free of charge.

TTP- Hillsborough County Area

Elderly, No Children, Disabled

Elderly, with Children, Disabled

Non-elderly, No Children, Disabled

Non-Elderly, with Children, Disabled

Hillsborough County

$252

$320

$254

$364

Florida Statewide

$257

$404

$261

$337

Orange The mission of the Orlando Housing Authority (OHA) is, “to offer a choice of safe and affordable housing options and opportunities for economic independence for residents of Orlando and Orange County.”

The mission is accomplished by developing and preserving of affordable housing, ensuring equal opportunity in housing, promoting self-sufficiency, and improving the quality of life for residents with low-incomes. Established in 1938, the Housing Authority of the City of Orlando (OHA) is an independent public corporation funded primarily by the United States Department of Housing and Urban Development (HUD). OHA is governed by a seven-member Board of Commissioners appointed by the Mayor of the City of Orlando. OHA owns and operates over 1,450 public housing units, located in fourteen (14) housing complexes. In addition to providing affordable housing to thousands of Orlando and Orange County residents, these complexes include amenities that enhance the residences’ quality of life. Per their website, OHA was honored as a “High Performer” for the sixth year by the Housing and Urban Development.

In comparison to the other five counties including Miami-Dade County, OHA provides the most specific description on how to improve the current infrastructure and operational methodology of the agency to maximize their efforts in providing services to individuals with disabilities. According the agencies Five Year Plan for Fiscal Years 2005-2009, under their goal to improve the quality of assisted housing, the specifics action mentioned the agency will “apply for funding to create special programs for special populations including the elderly, disabled and individuals in recovery from substance abuse.”

Additionally, in response to their goal to provide an improved living environment, the agency’s action 183

63

New Freedom Riders, http://newfreedomriders.com/trips, Accessed February 3, 2017

plan includes a description that states “designate developments or buildings for particular resident groups (Elderly, persons with disabilities)”. These designated buildings include Carver Park Senior Building, Lorna Doone, Johnson Manor and the Villas at Hampton Park (elderly only) and Meadow Lake (disabled only). The plan also specifically mentions their pursuits to “provide or attract supportive services to increase independence for the elderly or families with disabilities.” This aim has six targeted sites: Griffin Park, Lorna Doone, Meadow Lake, Johnson Manor, the Villas at Hampton Park and Reeves Terrace.

Orange County also serves as a great example of how to address the specific needs of individuals with disabilities in the initial application of public housing. For instance, in the last page of the application, it states that an individual with disabilities must answer questions three through eight. 184 Required application questions are below: 

“Are you or a household member receiving Medicare Benefits?”



“Are you or a household member receiving Medical Assistance through the Welfare Department?”



“Do you or a household member pay for any medical insurance/hospitalization?”



“Are you or a household member making payments on outstanding medical bills?”



“Do you or a household member incur expenses for prescription drugs or medical supplies on a regular basis that are not covered by Medical Assistance or health insurance?”



“If you are age 62 or older, would you prefer to live in housing designated specifically for seniors?”



“Do you or any household member(s) require any modification in PHA procedures or special adaptations to a housing unit to accommodate a handicap or disability? Yes or No. If yes, describe the reasonable accommodation required” 185

In addition to providing an excellent model in their application format to answer the specifics needs of individual with disabilities, OHA also provides a detailed format to specifically answer the infrastructures needs of individuals with disabilities. The OHA, in partnership with Architects Unlimited, conducted an independent study called the UFAS Accessibility Assessment with the purpose of assessing “the public housing properties of the Orlando Housing Authority (OHA) to determine the current level of physical accessibility and compliance with UFAS (Uniform Federal Accessibility Standard).” 186 Overall, “UFAS is the applicable code for the design, construction, and alteration of public housing developments so that mobility handicapped persons will have ready access to and use of them in accordance with the Architectural Barriers Act, 42 U.S.C. 4151- 4157.” In general, the “report identifies the obstacles that limit the physical accessibility of individuals with disabilities to utilizing OHA's public housing programs or activities. Individual property reports include narrative and figurative descriptions of barriers observed, citations of areas of code non-compliance, and recommendations to remove these barriers.

The outcome of this report provided the OHA a comprehensive assessment of its public housing Orlando Housing Authority, Section 8 Housing Choice Voucher Application, http://www.orl-oha.org/Application/S8AdmissionsPacket112216.pdf (accessed July 10, 2017).

185 Ibid.

186 Orlando Housing Authority, UFAS Accessibility Assessment, by Architects Unlimited, 2012, Orlando, Florida, http://www.orl-oha.org/documents/UFAS_Complete.pdf (accessed July 10, 2017).

184

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properties regarding code compliance and identified courses of action to most efficiently and effectively achieve full compliance with UFAS.”187 TTP- Orange County Orange County

Elderly, No Children, Disabled $243

Elderly, with Children, Disabled $0 (N/A)

Non-elderly, No Children, Disabled $261

Non-Elderly, with Children, Disabled $303

Florida Statewide

$257

$404

$261

$337

Area

Pinellas Per the website of Pinellas County Housing Authority (PCHA), the mission of the agency is “to provide safe, quality housing for persons in need and to cultivate healthy, vibrant neighborhoods for Pinellas County.”188 According to their public reporting, the PCHA serves approximately 8,500 Pinellas County residents. These are tenants residing in the properties owned, operated, and managed through rental subsidies. The following is a breakdown of their public housing projects: 

Public and Assisted Housing: 695 units at 5 properties.



Housing Choice Voucher (Section 8): Administer rental vouchers to 2865 Pinellas County families.



Special Housing Programs: 470 previously homeless veterans housed through the HUD Veterans Affairs Supportive Housing (HUD-VASH) program.



Mixed-Income Housing: Own and manage 1061 mixed-income units at 5 properties.

The operating budget of PCHA is estimated to be more than $37 million and provides employment of over 80 individuals. According to their annual reports, the agency receives more that $28 million annually in federal resources and $22 million in direct payments to private property owners in Pinellas County.189 Some of the outstanding merits and honors awarded to the PCHA are the following: 

‘Helping Hand Award’ presented to PCHA by the Boys and Girls Clubs of the Suncoast on June 2015



National Merit Award in Program Innovation and Project Design presented by the National Association of Housing and Redevelopment Officials for Pinellas Heights on July 2015



Best Practice Award, Large Agency Category presented by the Florida Association of Housing and Redevelopment Officials for Pinellas Heights on August 2015



Certificate of Appreciation presented by the Pinellas Sheriff’s Police Athletic League on December 2015

For the second time in three years, PCHA was honored as Housing Authority of the Year by the Florida Association of Housing and Redevelopment Officials (FAHRO). The “Housing Authority of the Year” award recognizes PCHA for providing outstanding affordable housing services in Florida. A number of PCHA’s community partners recommended PCHA as 2014 Housing Authority of the Year. The agency Ibid.

Pinellas County Housing Authority, PCHA Annual Report 2014, 2015, http://www.pinellashousing.com/wpcontent/uploads/2015/03/Annual-Report-2014-commercial-9.30.2015.pdf (accessed July 10, 2017).

189 Ibid.

187 188

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was described as “…a creative and committed board and staff that are always willing to work with community partners to create new opportunities for affordable housing to become a reality.” 190 Pat Weber, Tarpon Springs Housing Authority Executive Director, honored PCHA by emphasizing their objectives and goals in finding “new innovative opportunities and partnerships to improve housing conditions for low income families and seniors, as well as the quality of their lives.” Overall, the program assists approximately 2,900 families and individuals with payment of a portion of their rent each month.191 The department also administers the HUD-Veterans Affairs Supportive Housing (HUD-VASH) program.

In addressing the specifics needs of individuals with disabilities living in Pinellas County, PCHA reserves nineteen units at Landings at Cross Bayou for individuals and families with special needs. However, their affordable assisted living facilities are only available for elderly individuals that meet the following criteria: (1) be 60 years or older, (2) meet Florida assisted living statutory requirements, (3) provide necessary financial documentation, (4) submit an $85 application fee, (5) agree to a criminal background check, and (6) submit a $300 security deposit upon choosing an apartment. Applicants who have a record of criminal activity that may threaten the life, health, safety, possessions, or right to peaceful enjoyment of other residents, or have drug-related criminal activity are not eligible for occupancy. 192 The following are the reported needs for the Pinellas County Profile of Community Needs from Waitlist

Primary Household Profile: Family with Children

Households on Waiting List: 7,249

Avg. Monthly Household Inc.: $865.81

Needed Elderly & Disabled: 3,608

Most Needed      

Bedroom Size: 1 Bedroom Bedroom Sizes 1= 2,856 Bedroom Sizes 2= 2,762 Bedroom Sizes 3= 1,368 Bedroom Sizes 4= 223 Bedroom Sizes 5= 40

It is worth highlighting one specific PCHA programs directed to the needs of individuals with disability.

The Resident Opportunity Self-Sufficiency (ROSS) program of the Pinellas County Housing Authority is open to all families of Rainbow Village and Lakeside Terrace who have a goal of working towards selfsufficiency.194 The ROSS program is open to elderly and disabled residents and provides access to support services that can assist them in maintaining housing. The effectiveness of the program is based on its capacity to link the individual disabilities to a “wide variety of programs and supportive services in order to help participants reach self-sufficiency, independence, and a better quality of life.” 195 The ROSS Ibid.

Ibid.

192 Ibid.

193 Ibid.

194 Pinellas County Housing Authority, “Resident Opportunity Self-Sufficiency Program (ROSS), http://www.pinellashousing.com/resident-services-and-programs/resident-opportunity-self-sufficiencyprogram-ross/ (accessed July 10, 2017).

195 Ibid.

190 191

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Service Coordinator is responsible for conducting an in-depth assessment with individuals with disabilities to determine their “goals and needs, develop an individual training and service plan” and ultimately assist them through the entire process of attaining these goals. 196

TTP- Pinellas County Area

Elderly, No Children, Disabled

Elderly, with Children, Disabled

Non-elderly, No Children, Disabled

Non-Elderly, with Children, Disabled

Pinellas County

$286

$394

$270

$307

Florida Statewide

$257

$404

$261

$337

196

67

Ibid.

Section C: Table Comparison Category Agency

Broward Broward County Housing Authority (BCHA)

Palm Beach Palm Beach County Housing Authority (PBCHA)

Hillsborough Tampa Housing Authority (THA)

Orange Orlando Housing Authority (OHA)

Pinellas Pinellas County Housing Authority (PCHA)

Agency Budget197

Miami-Dade Miami-Dade Public Housing and Community Development (PHCD) $230,349 Million

$104,182 Million

N/A

N/A

N/A

N/A

Waiting list open or closed?

Closed

Closed

Closed

Closed

Closed

Chronically Homeless Individuals

Sheltered

Sheltered Unsheltered 28 424 Sheltered Unsheltered 3 4 Sheltered Unsheltered 110 423 Sheltered Unsheltered 29 86 8.3%

Sheltered Unsheltered 53 191 Sheltered Unsheltered 8 2 Sheltered Unsheltered 187 93 Sheltered Unsheltered 112 69 9.4%

Sheltered

Persons in Chronically Homeless Families Severely Mentally Ill (Homeless Persons) Veterans (Homeless Persons) Adults who use special equipment because of a health problem (2013)198 Adults who are limited in any way in any activities because of physical, mental, or emotional problems (2013)199 Income in the past 12months below poverty level with a disability200

98 Sheltered 37 Sheltered 639 Sheltered 126 7.1%

Unsheltered 337 Unsheltered 0 Unsheltered 314 Unsheltered 31

Sheltered 139 Sheltered 11 Sheltered 345 Sheltered 129 8.0%

Unsheltered 261 Unsheltered 19 Unsheltered 180 Unsheltered 81

82 Sheltered 0 Sheltered 185 Sheltered 225 5.7%

Closed Unsheltered 24 Unsheltered 0 Unsheltered 16 Unsheltered 6

Sheltered 141 Sheltered 0 Sheltered 259 Sheltered 269 9.0%

18.6%

21%

16.4%

21.6%

17.5%

19.5%

74,465

39,875

24,595

35,130

25,145

25,195

Unsheltered 462 Unsheltered 4 Unsheltered 324 Unsheltered 111

Broward County Housing Authority, Broward County Housing Authority 2017 Budget, 2016, http://www.bchafl.org/Docs/CommunicationsAndPublicAffairs/BCHA%202017%20Budget.pdf (accessed July 10, 2017).

198 Florida Department of Health, Division of Public Health Statistics & Performance Management, “Adults Who Use Special Equipment because of a Health Problem,” http://www.flhealthcharts.com/charts/Brfss/DataViewer.aspx?bid=0054 (accessed July 10, 2017).

199 Ibid.

200 Administration for Community Living, “Florida 2008-2012: Table S210DIS02-Sex by Age by Disability Status, http://www.agid.acl.gov/DataFiles/ACS2012/Table.aspx?tableid=S210DIS02&stateabbr=FL (accessed July 10, 2017).

197

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SERVICES TO INDIVIDUALS WITH NEURODEVELOPMENTAL DISORDERS A. STATE FUNDED ORGANIZATIONS /A GENCIES Organizations that provide State Assistance: These organizations focus on providing state resources to individuals with disabilities. They focus on providing services that facilitate the process for individuals with disabilities to register to state funded programs such as Food Assistance Program, Temporary Cash Assistance, Medicaid programs, assisting living, Adult Day Cares, transportation and others. These agencies are funded by the state. 

ACCESS Florida- Florida Department of Children and Families: The Economic Self-Sufficiency Program helps to promote strong and economically self-sufficient communities by determining eligibility for food, cash and medical assistance for individuals and families on the road to economic recovery. The state agency provides individuals with disabilities with assistance on the types of programs they qualify such as the Food Assistance Program, Temporary Cash Assistance, Medicaid Programs, and others.



Agency for Persons with Disabilities (APD): The agency serves more than 50,000 Floridians with disabilities. The agency provides information, employment, special programs, support groups, zero tolerance initiative, and supported living. Overall, the agency supports persons with developmental disabilities in living, learning, and working in their communities.



Miami-Dade County Department of Human Services: Provides the delivery of resources to targeted communities including children, seniors and families through advocacy, education and service delivery. Types of services offered include Adult Day Care, care planning, disability services, foster grandparents, home care, and meals for the elderly, retired and senior volunteer program, specialized senior centers, and senior companions.



Special Transportation Services (STS): This transportation service is available for people with a physical, mental or intellectual disability who cannot ride Metrobus, Metrorail or Metromover. Any resident whose disability prevents them from riding regular transit vehicles qualifies for STS. Residents with temporary disabilities may also be eligible for this service.

Advocacy Organizations: The following organizations are funded primarily through state funding to provide basic services to individuals and families with individuals with disabilities. The mission of these organizations is to provide support, information, and advocacy for individuals with all types of physical and mental disabilities. 

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Advocacy Network on Disabilities: Beginning in 1970 as a committee of South Florida’s Health Planning Council, The Advocacy Network on Disabilities is a coalition of family members; community service providers; advocates; individuals with disabilities; and other public, private and governmental organizations. With an original focus on individuals with developmental disabilities, today the organization also provides supports and services to individuals with physical, sensory, social/emotional and other disabilities. The organizations provides individual & Family Support, Children’s Wheelchair Repair Fund, and an All Children Together (ACT) Resource Network Systems Advocacy.



Florida Alliance for Assistive Services and Technology (FAAST): FAAST is administered through the Florida Department of Education, Division of Vocational Rehabilitation and is federally funded by the Rehabilitation Services Administration (RSA) under the Assistive Technology Act of 1998, as amended in 2004 (P.L. 108-364). Since its inception in 1998, FAAST has been and continues to be a resource to provide Floridians free access to information, referral services, educational programs, and publications in accessible format on extensive topics related to disability rights, laws/policies, and funding opportunities for assistive technology.



South Florida Community Development Coalition (SFCDC): The mission of SFCDC is carried out through three individual efforts, first, capacity building and training, second, policy research and education and third, facilitating the development of partnerships. Types of Services provided include educating the community and develop policy research.

Organizations that assist in providing employment: The following organizations focus on providing avenues of employments for individuals with disabilities. These agencies and organizations are funded by the state and provide services that range from general information to programmatic assistance in attaining job placements. 

Florida Developmental Disabilities Council, Inc.: The mission of the Florida Developmental Disabilities Council, Inc., is to advocate and promote meaningful participation in all aspects of life for Floridians with developmental disabilities. Types of services include strengthening transition and employment, supporting community inclusion, building selfdetermination and advocacy, improving services and supports.



Florida Division of Vocational Rehabilitation (VR): VR a federal-state program that helps people who have physical and mental disabilities get or keep a job. Types of services include medical and psychological Assessment, vocational evaluation and planning, career counseling and guidance, training and education after High School, job-site assessment and accommodations. Within the spectrum of vocational training, VR offers job placement, job coaching, on-the-job training, and supported employment. They also help with assistive technology and devices, and time-limited Medical and/or Psychological treatment.



The ACCESS department of Miami-Dade Community College: By providing a variety of services that address a spectrum of disabilities, the ACCESS department works to ensure equal access and opportunity throughout the college experience. ACCESS empowers students to succeed by enabling students with disabilities to maximize their talents, skills, and abilities. Its goal is equal access and opportunity. In addition, to its role in the classroom, the department works to promote awareness of disability issues, federal and state regulations, and College procedures that encourage accessibility and inclusion. They also provide assistance after college, students are able to access services that help them attain employment.

B. NON-PROFIT O RGANIZATIONS 501( C)(3) Organizations that assist with Housing: The following organizations are composed of non-profit organizations classified as 501(c) (3) organizations who focus on providing affordable housing options to

70

individuals and families with mental or physical disabilities. These organizations function through government grants, donations, and general fundraising. 

Carrfour Supportive Housing: A nonprofit organization focused on the development, operation and management of “…housing communities for individuals and families in need through a unique approach combining affordable housing with comprehensive, on-site supportive services.” The program consists of 76 affordable housing units for former homeless individuals including 36 units serving disabled persons and 15 units serving elderly residents.



SCLAD (Spinal Cord Living-Assistance Development, Inc.): SCLAD’s mission is to “facilitate independent living, economic self-sufficiency and full community integration for persons with disabilities by providing and coordinating support services.” The organizations goal is “to make available to individuals with disabilities of all ages, through programs and other community resources, the necessary tools to achieve the highest degree of independence possible within their natural environment, with their families and in their community.” Today, the non-profit organization celebrates 25 years of service. SCLAD’s is focused on creating housing initiatives aimed to make available barrier-free housing that is affordable to individuals with disabilities and their families.



Casa Familia: Casa Familia will foster affordable housing, vocational training, employment services, and person centered solutions for individuals with Intellectual and Developmental Disabilities (I/DD). Their website states that "Casa Familia encompass a community of people including caregivers, educators, friends and family that will empower and sustain the residents to live meaningful, productive and fulfilling lives. Continued lifelong learning, social growth and skills development will support the residents to achieve their fullest potential."



The Miami Coalition of the Homeless: The mission of the organization is to “create formal alliances to breakdown silos within the homeless sector and support all individuals who experience homelessness at any point in their lives.” The organization drives for the development of rental housing affordable to extremely low-income households as part of a mixed-income development. These rental options include for individuals with disabilities who find themselves seeking shelter.

Organizations that assist with Advocacy: The following organization focus on promoting advocacy that in general improves the lives of individuals with disabilities in the state of Florida and in the region of south Florida. The funders of these organization include private and public funding. Funders include the Children’s Trust, Miami-Dade County, FEMA, The Miami Foundation, and individual donors. These organizations as their supporters to advocate for the rights and wellbeing of families and individuals with disabilities.

71



Dade Legal Aid: Dade Legal Aid is a nonprofit law firm dedicated to providing greater access to justice to impoverished individuals, children, teens, women and families in need of assistance using dedicated Staff and Pro Bono Attorneys in the areas of Veterans and Wills on Wheels.



Legal Services of Greater Miami, Inc.: They are the largest provider of broad-based civil legal services for the poor in Miami-Dade and Monroe Counties, and is recognized in the state and in the nation as a model legal services program. Focus on individuals with disabilities- Provides

outreach and education- building stronger community "We recover more than $3 million for clients in disability, unemployment, child support, and government benefits." 

The Advocacy Network on Disabilities: Beginning in 1970 as a committee of South Florida’s Health Planning Council, The Advocacy Network on Disabilities is a coalition of family members; community service providers; advocates; individuals with disabilities; and other public, private and governmental organizations. With an original focus on individuals with developmental disabilities, today the organization also provides supports and services to individuals with physical, sensory, social/emotional and other disabilities. Some of their services include All Children Together (ACT) project increases the capacity of community programs to meaningfully include individuals with disabilities.



Switchboard of Miami (Jewish Community Services): A private, nonprofit organization that provides the Miami-Dade County community with comprehensive information and referral services 24 hours a day, 7 days a week, 365 days a year for people with and without disabilities.



Autism and Music: Autism & Music is a 501(c) (3) certified non-profit organization with the mission of spreading autism awareness through music-interaction activities. They strive to build a more inclusive and accepting society by hosting music, art, and sports activities for individuals with all abilities. The goal is to have a fun environment to socialize and play while promoting inclusion through music and sometimes art and sports.



National Organization for Rare Disorders (NORD): NORD, a 501(c) (3) along with its more than 260 patient organization members and is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.



Parent to Parent of Miami: A Community Parent Resource Center provides information, educational training and support to families who have children and adults with disabilities and/or special needs in Miami-Dade and Monroe counties. The Center is funded by grants from the U.S. Department of Education Office of Special Education Programs, The Children's Trust, various foundations and donations.



Down Syndrome Association of Miami: The mission of the Down Syndrome Association of Miami is to educate the Miami-Dade community about Down syndrome and to promote positive acceptance of individuals living with Down syndrome. Their services include fundraising and support groups for parents. Most importantly providing community awareness.



Autism Speaks South Florida Chapter: They work with the local community to further our mission to fund research, increase awareness and family services, and advocate for individuals with autism and their families. Services offered include housing and community living, autism and employment, postsecondary educational opportunities, autism speaks adult service grants, advancing futures for adults with autism, adults with autism in the news, adults with autism resource library.



National Alliance on Mental Illness- NAMI of MIAMI: We are friends, families and persons with mental illnesses who offer information, support, advocacy and resources for each other. They offer support groups, online resources, legal representation, advocacy, volunteers, events, and research.

72

Organizations that assist with independent living: The organizations listed below are nonprofits 501(c) (3) focused on increasing the education and opportunities for individuals with disabilities to live independent lives. These organizations are funded by individual donors and government grants. They depend on public support and contribution in order to operate and accomplish their missions. The list ranges from well-known organizations such as the United Way to locally grown south Florida organizations such as the WOW Center.

73



Center for Independent Living of South Florida: The center helps facilitate basic information, local providers and resources to help promote independent living for individuals with disabilities. The center provides assistance in developing what they call an “Independent Living Plan” to identify and address goals that promote independence in individuals with disabilities.

Specifically, the plan reviews the housing, transportation, medical services, accessibility, assistive technology, employment, education, benefits and resources, recreation, social needs as well as anything else that the participant chooses to address.



The Victory Center for Autism and Behavioral Challenges: The Victory Center, Inc. is a Florida non-sectarian, not-for-profit Corporation that provides children with autism and similar disorders comprehensive individualized treatment with a 1:1, 2:1 and 3:1 student/teacher ratio, in a classroom setting that is unique in Southeast Florida. The types of services include After-School Programs Applied Behavior Analysis (ABA) Camps Recreation and Community Activities Schools - Nonpublic (Private) Schools - Preschool Social Skills Transition to Adult Services.



Best Buddies Florida: A nonprofit 501(c) (3) organization dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment and leadership development for people with intellectual and developmental disabilities (IDD). Best Buddies is the world’s largest organization dedicated to ending the social, physical and economic isolation of the 200 million people with IDD. For individuals within this community, Best Buddies helps them form meaningful friendships with their peers, secure successful jobs, live independently, improve public speaking, self-advocacy and communications skills, and feel valued by society.



Shake-a-Leg Miami: A watersports community serving people of all abilities. It is a no-forprofit organizations working with Children and Adults with physical, developmental and economic challenges. The organization offers 7 days a week, teach environmental lessons, therapeutic sailing, swimming, and Kayaking, and other watersports.



The WOW Center: The goal of The WOW Center is to provide quality programs that support individuals with developmental disabilities to lead meaningful and productive lives. The centers activities are focused on “exploring their potential, develop a sense of community and pursue independence and jobs if able." To accomplish this the Center focuses on improving the individuals’ adaptive skills that are required to live independently, as well as becoming integral components of the community. Areas of focus include “communications, self-care, home living, social skills, health and safety, self-direction, functional academics, employment and leisure.



The Arc of South Florida: The Arc of South Florida is a local chapter of The Arc, one of the largest volunteer organizations in the U.S. Founded in 1953 by a group of concerned parents. The Arc of South Florida serves the over 60,000 Miami-Dade County citizens with intellectual and developmental disabilities. There are more than a dozen programs and services provided by the Arc of South Florida each structured and designed to meet the specific needs of its individual clients. The departments heading up these programs and services are: Children & Youth, Adult Services, Advocacy & Guardianship and Trust Services. Three programs are strategically located throughout the Miami-Dade County. All the Day Services provide activities based on individual desires, needs, and Group homes, Supported employment, Supported Living programs, L.E.A.P Program (learning enhancement acquisition program) a day training program- toilet training, communication, social behavior, feeding, and on task behavior.



United Way: They partner with hundreds of individuals and organizations that share a collective vision for what is possible. Through our work in education, financial stability and health, there mission is to improve the odds for children and families.



Sunrise Community Inc.: A private, not-for-profit organization supported by the Sunrise group, whose mission is to provide people with disabilities the assistance and support necessary to enable them to live valued lives in the community. They aim to influence public policy and spearheading legal challenges that dramatically improved the lifestyles of individuals with intellectual and other disabilities. Types of services include Day program services, and intermediate Care Facility (ICF/IDD)-Day Program Services include planning, training, coordination and support to enable and improve independent functioning, physical health and development, communication skills, cognitive training, socialization, community integration, domestic and economic management, behavior management, responsibility and self-direction. Staff may provide assistance/training in daily living activities and instruction in the skills necessary for independent pursuit of leisure time/recreational activities. Social and other adaptive skills-building activities such as expressive therapy, prescribed use of art, music, drama or movement may be used to modify ineffective learning patterns and/or influence change in behavior. Transportation services to day programs are included as well as transportation to social events or community activities when public transportation and/or alternate transportation is not available. The Sunrise Group provides residential services for adults and children with Intellectual and Developmental Disabilities, including Autism, that provide 24-hour supervision, nursing services, therapies, behavioral supports, training in self-care, daily living, and social skills.



Easter Seals South Florida, Inc.: The mission is to spread help, hope & answers. To change the way the world defines and views disabilities by making profound, positive differences in people’s lives every day. Types of Services include support groups, sitters, Adult Day Care, Support Groups for Caregivers. The Adult Day Care offers many engaging activities including music, games and exercise in the "Memory Gym." Men and Women are encouraged to participate in a periodic art auction, annual Butterfly Release program, Caregiver's Luncheon and other special events.

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Organizations that assist with employment: The organizations listed below work specifically with the mission to provide reliable employment to individuals with disabilities. These organizations (501) focus on providing persons with disabilities an opportunity to provide for themselves by training them, and finding suitable opportunities. 

Disability Independence Group, Inc.: Disability Independence Group, Inc. (DIG) is a 501(c) (3) non-profit organization that promotes recruitment, education and employment of persons with disabilities thereby improving their lives through competitive employment and financial stability; and through the changing of society’s perception of persons with disabilities. Types of services include promoting individual autonomy for Persons with Disabilities including the freedom to make one’s own choices. They also break down attitudinal barriers and promoting greater social awareness and acceptance towards Persons with Disabilities. In addition, they ensure the opportunity for Persons with Disabilities to choose their place of residence within the community on an equal basis with others with access to a range of in-home, residential and other community support services. Position 4: Providing equal information access for Persons with Disabilities in accessible formats and technologies appropriate to different kinds of disabilities. Position 5: Ensuring the right to work and education, on an equal basis with others that is inclusive and accessible to Persons with Disabilities. Position 6: Advocating for justice in Domestic and International forum for the legal rights of Persons with Disabilities. Position 7: Supporting Families and Care Givers of Persons with Disabilities.



Goodwill Industries of South Florida, Inc.: Goodwill Industries of South Florida, has become a significant support system for people with disabilities. It provides Job placement, vocational programs, and school programs.



United Community Options of South Florida: Formerly United Cerebral Palsy of South Florida, serves more than 1,600 infants, children and adults at over 60 locations in MiamiDade, Broward, Palm Beach & Mid-Coast Counties. The organization, celebrating 70 years, provides a wide array of quality supports, services and programs that offer choices and options to assist each person in creating their own future based on personal goals and desires. These services include Transitional Learning Academy, Supported Training and Employment Program (STEP), Assistive Technology, Education, Employment Skills Training, Life Long Learning Program, Long term Care, Residential Group Homes, Social and Recreational Programs, Supported Employment, Supported Living.

C. FOUNDATIONS AND P RIVATE ORGANIZATIONS Organizations utilizing their own private funds: The following organizations have focused on providing resources to individuals with disabilities utilizing their own funds. These listing include universities and foundations who work closely to provide funding and resources to individuals with disabilities to improve their overall quality of life. 

75

Social Security Disability Resource Center: Private website handled by Tim Moore, goal is to inform readers about how the social security disability and SSI Disability process works from start to finish.



The Office of Disability Services (ODS) of the University of Miami: Provides academic accommodations and support to ensure that students with disabilities are able to access and participate in the opportunities available at the University of Miami. Individuals with disabilities must request academic accommodations through the Office of Disabilities.

Accommodations are determined on a collaborative and case-by-case basis and are based on the documentation provided by the individual. ODS determines eligibility for services and accommodations and collaborates with faculty and staff to ensure individualized implementation of recommended services and accommodations, including accessible coursework, housing, transportation and campus activities. Registering with ODS is the required first set for students who wish to request a disability-related accommodation or service.



The Woody Foundation: The Woody Foundation, Inc. is a 501(c) (3) not for profit organization formed in 2011 to raise funds for the recovery of people with spinal cord injuries. Fundraising efforts such as Golf classic, Lionfish Bash, the Lobster Feast, Woodystock.



University of Miami/Nova Southeastern University Center for Autism Related Disabilities (UM/NSU CARD): A comprehensive outreach and support program serving people with autism and related disabilities, their families, and the professionals who work with them.

CARD seeks to provide support and assistance with the goal of optimizing the potential of people with autism, dual sensory impairment, and related disabilities. Types of Services; providing information, provides support groups, referrals, connections with foundations.

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Disability Resource Center (DRC) at Florida International University: Our aim is to guide and support students with disabilities throughout their college experience, from transitioning into FIU to graduating from our university, the DRC’s goal is to assist in helping you become successful. According to their website, they provide one-on-one consultation throughout the academic journey of students with disabilities. Within their systems you may donate or help in financial assistance. The program offers scholarships to students.

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CONCLUSION The realities of contemporary public finance establish critical and sobering parameters for policy initiatives in the IDD policy space. The Federal Government faces “The Three D’s: Debts, Defense, and Demographics” in its short- and long-term policy horizons. 1 Maintaining Social Security in an aging society presents a serious structural challenge against a backdrop of burgeoning deficits. Meanwhile, the “peace dividend” expected at the end of the Cold War has been short-circuited by new security threats that have driven defense expenditures higher. The upshot: It is unlikely significant domestic initiatives will emanate from the federal government now and in the near future.

Similarly, revenue stringency is likely to preclude the states from serving as “laboratories for democracy.” Recent data from the National Association of State Budget Officers suggests post-Great Recession revenue growth is slowing. 2 This reflects the tepid nature of the current recovery. It also represents a revenue structure tied to a 19 th and 20th Century manufacturing-based economy based largely on “widget sales,” rather than a 21 st Century economy substantially comprised of services exempted from sales taxation.3 Hence, most states face education, prison, highway, and healthcare (particularly Medicaid) budget increases outstretching revenues.

Where does this leave our discussion? The FIU Research Team makes the following recommendations: 1) Policymakers should focus on bolstering employability of the IDD population. Our survey results show that financial self-sufficiency is of critical importance to caregivers. We acknowledge that only a subset of those with IDD diagnoses may attach to the labor force.

Nevertheless, those that do achieve increased self-respect and dignity, while bolstering their finances and quite likely, those of caregivers. This increases client ability to finance transportation, housing, and other services. It also enables them to “buddy” with those who are unable to work and help to subsidize their living costs.

2) It may be time to “throw in the towel” regarding significant increases in public housing for IDD clientele. Traditional public housing with origins in the Great Depression is in a long-term decline. The fiscal restraints noted above have led to diminished public housing stock and Section 8 subsidies. Our research in Dade reflects national patterns of a growing mismatch between supply and demand of affordable housing, with the disabled (broadly defined) competing for diminished provision. This leads to point 3.

3) The private and nonprofit sectors are important partners for increasing the IDD population housing choice. Tax breaks should be considered for private builders to create or retrofit housing that allows for multiple generations under one roof with greater privacy for IDD clients and their caregivers. Local governments should work with builders to encourage greater sensitivity to the needs of the IDD population, with emphasis on both the cognitive and physical challenges they face.

4) IDD advocates and governments should work with on demand transportation providers to foster greater transit opportunities. The long lead times associated with STS and similar providers may diminish employability and quality-of-life for the IDD population. New models of transit may foster greater independence and enhance social interaction.

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5) The allied health professions should be provided incentives to encourage and train practitioners dedicated to the IDD clientele. Whether it is tax incentives, insurance subsidy, or tuition relief, policy tools are needed to encourage doctors and nurses with the training, skill, and interest to practice in an emerging medical sub-specialization. IDD clients express numerous physical and mental symptoms. Practitioners who can deal with them holistically are a scarce commodity. Moreover, integrating IDD medical provision at a particular point of service reduces consumption at others.

6) Many states are recognizing the import of moving away from traditional fee-for-service care and adopting managed care, despite the challenges of effective rate setting under value-based purchasing. Changes to the Affordable Care Act are likely to disrupt the Medicaid landscape.

Nonetheless, medical care for the elderly, disabled, and other high-cost sub-populations appears to be transitioning away from traditional for-for-service care, toward models that emphasize greater accountability within a capitated or global cap structure. 4 7) It may be appropriate to engage insurers in “quasi-experiments” that provide cost-effective medical provision to the burgeoning IDD population. Insurers have the cost data needed to analyze models of medical care that deliver best practice at least cost. Our interviews corroborated this role for private insurers.

8) Our findings underscore the need for an “IDD Systems Integrator.” IDD clients and their caregivers cope with a fragmented service palette. Negotiating this complex institutional landscape consumes client and caregiver time and may lessen client independence. The FIU Research Team is agnostic on the institutional domicile of the integrating team members.

Nonetheless, a critical takeaway from interviews and surveys across all stakeholders is the need for assisting clients and their caregivers’ legal, medical, transportation, and housing “path forward. “ 1

Debt, Deficit, & Defense: A Way Forward. Washington, DC: Report of the Sustainable Defense Task Force, June 11, 2010.

2

Fiscal Survey of the States. Washington, DC: National Association of State Budget Officers. June 15, 2017.

3

Michael Mazerov, Expanding Sales Taxation of Services: Options and Issues. Washington, DC: Center on Budget and Policy Priorities, June 2003.

4”

Stacy Mazer, “Medicaid Roundtable: A Discussion among States.” Washington, DC: National Association of Budget Officers, May 22, 2017. www.nasbo.org/blogs-mazer/2017/05/22medicaidroundtable-a-discussion-among-states, download July 21, 2017.

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Appendix A: Interview Participants Jose "Ernie" Martinez, Chairman of Miami-Dade Commission on Disability Issues Clarence D. Brown, Community and Housing Management Division Director and Jorge R. Cibran, Development Division Director at Miami-Dade Public Housing and Community Development (PHCD) Brenda Lampon, Interim Director, Division of Vocational Rehabilitation, Miami-Dade Lisa Goring, Executive Vice President of Programs and Services & Angela Lello, Director of Housing and Community Living, Autism Speaks Deborah Dietz & Matthew Dietz, Esq., Disability Independence Group Evelyn Alvarez, Southern Region Manager, Agency for Persons with Disabilities Dr. Yolangel (Yogi) Hernandez, VP and chief medical officer for Humana’s Care Delivery Organization

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