The Arc of Texas 2022 Partners in Disability Leadership Yearbook

2022 PDL YEARBOOK VOLUME 3

CONGRATULATIONS TO THE PDL CLASS OF 2022!

BY WENDY WARD, EDUCATION & LEADERSHIP SPECIALIST

I am pleased to announce the graduation of the Partners in Disability Leadership (PDL) Class of 2022! The Arc of Texas was fortunate to work with such talented professionals who are motivated to effect positive change in systems designed to serve Texans with intellectual and developmental disabilities (IDD). I am grateful to the PDL class members for the diligence with which they worked on their leadership projects, and the opportunities and barriers they seek to address through persistence and creativity. I also had the privilege to work with luminaries in the field of IDD service delivery, disability rights and disability justice, communication, and leadership development. These expert

presenters provided the PDL participants learning opportunities and perspectives that were illuminating and insightful.

Over the course of the year, both graduates and expert presenters made significant contributions to the goals and objectives of PDL, and the program is the better for it. We are proud to support a program that attracts such talented professionals in the IDD field who share our vision for a world where Texans with IDD are included in their communities where quality supports and services are available to meet their needs and choices. Please enjoy learning more about the outcomes of the PDL 2022 program.

PDL 2022 EXPERT PRESENTERS

The Arc of Texas would like to thank the following brilliant presenters who shared their time and expertise with us during Partners in Disability Leadership 2022:

ARI NE’EMAN

Harvard Law School Project on Disability

LEIGH ANN RODGERS BetterTeams

TARA DEVILBISS

Texas Health and Human Services Commission

JOE MACBETH National Alliance for Direct Support Professionals

JOLENE SANDERS-FOSTER

Coalition of Texans with Disabilities

BRIT MILES Institute for Community Inclusion at UMass Boston

SUSAN MURPHREE

Disability Rights Texas

HALEY TURNER

Texas Health and Human Services Commission

ELIZABETH TUCKER

EveryChild Institute

JESSICA MORSE

Texas Health and Human Services Commission

AUDREY YOUNG

Texas Department of State Health Services

REBECCA COKLEY Ford Foundation

DR. JUSTIN PORTER

Texas Education Agency

EMILY LADAU

Activist, Author, Digital Communications Consultant

JENIFER SARVER Sarver Strategies

JONAS SCHWARTZ Texas Workforce Commission

ARA MERJANIAN

Governor’s Center for Management Development, LBJ School of Public Affairs, University of Texas at Austin

LAURA VEGAS

National Association of State Directors of Developmental Disabilities Services

TRAVAN CARTER

former student, San Angelo Independent School District

BRENDA WELLAN San Angelo Independent School District

CHELSEA ANDERS

Texas Council for Developmental Disabilities Partners in Policymaking

AKILI ATKINSON Akili’s Corner

SKYLER MUELLER

Texas A&M AgriLife Extension Service in partnership with the Texas Council for Developmental Disabilities

JENNIFER TENNICAN JenTen Productions

HANNAH BOULINE Vertical Harvest

JOHNNY FIFLES

Vertical Harvest

MICEALA CONNERY

The Kelsey

ALLIE CANNINGTON

The Kelsey

KATHIE SNOW Parent, Activist, Author

GINGER MAYEAUX CLASEN Consultant and Advocate

ASHLEY FORD

The Arc of Texas BROOKE HOHFELD Texas Advocates

KERI GRAY Keri Gray Group

DR. DEBORAH M. SPITALNIK Rutgers Robert Wood Johnson and The Boggs Center on Developmental Disabilities Medical School

MONIKA GRAHAM Alliance for Justice

TEXAS STATE SENATOR BEVERLY POWELL

TED RAAB

Office of Texas State Representative Mary González

ALI GENTRY

The Arc of Texas Board of Directors

RONNIE BROWNING Self-advocate

PROVIDING THE TOOLS TO LAW ENFORCEMENT SO THEY CAN BETTER SERVE AND SUPPORT THE IDD COMMUNITY

BY LANDRIL BRUMFIELD

I would like to get more involved with the Tarrant County Police Department. My role as the Crisis Intervention Specialist is to advocate for individuals with developmental disabilities as well as support the people who care for these individuals daily (family members, teachers, providers and staff, housemates, doctors, therapists, schools, etc.). I want to continue to increase capacity and understanding within the police department surrounding crisis in the population of individuals with intellectual and developmental disabilities (IDD).

My plan has remained the same: to advocate, educate, and train officers on the importance of inclusion as well as bring awareness of the challenges they may face when responding to a crisis in the community for an individual who has or presents as having IDD.

Police departments have been more aware of mental health related issues and have been investing more resources into receiving training on how to work with people with mental health diagnoses over the years. Recently, police departments have started to recognize the gap in IDD related issues and started asking for additional support and resources to improve their relationships within the community. Therefore, I will continue to bridge the gap between the community and law enforcement, to build stronger communities.

LANDRIL BRUMFIELD

Crisis Intervention Specialist (CIS), Disability Services, MHMR of Tarrant County, Fort Worth, TX “My goal is to educate and train on intellectual and developmental disabilities within the law enforcement community.”

OPEN HOMES/OPEN HEARTS

BY MARIA CASIMIRO

For more than 20 years, I have worked in the IDD field advocating in different capacities. I have directly represented the IDD population, direct care, family members, and host home providers. In my current role, I have seen successes and failures in IDD placements and have considered what essential qualities make a host home placement successful. When a person in-service seeks placement at a provider agency, we must ensure they are placed in stable and nurturing homes with providers wellequipped to address various needs and behaviors. Effective placement decisions reflect the following commitments: best placement, family placement, and permanent placement. However, within our IDD community, placement stability continues to be challenging for most people. Finding host providers with empathy and tolerance has been noted as a predictor of placement stability for the IDD population. Closing the gaps in finding host families with open homes and hearts will likely result in fewer placement disruptions for our population.

The HCS program provides residential assistance for people with intellectual disabilities. When seeking placement for a host home/companion care setting, homes within the community where a person in-service has a choice of who they want to live with and where they want to live provide a person-centered approach. The dynamics of the home can be tailored to the person’s needs and

preferences to include the area of town where they would like to live—aiming to improve the quality of services and supports, integration into the community, and quality of life.

Having been in the IDD field for more than 20 years, I have encountered bad placements and heard how persons in-service are not given a choice of where and with whom they would like to live. Moving a person around keeps them in limbo, increases their anxiety, and causes trauma without the support of a lifelong family. My passion for offering options for the people we serve comes precisely from this gap.

As new admissions or referrals come our way, we will meet with the person’s in-service, family member, LAR, and advocate to discuss the person’s needs and preferences and identify how the person’s in-service can utilize their environment, i.e., mobility, accessibility of the home, preference of the location, liking or disliking animals, wanting housemates, looking for a one-provider home. We will also ask: Does cultural background and faith matter to the person in-service among other considerations?

Great host home providers persevere. They hang in there with the person in-service through the good times and the bad, and they also let the person inservice know they will continue to be there for them. This does not mean that a good host home provider never gives notice that the placement is not a good one. Sometimes, it was just not a “match made in heaven.” But most host home placements can be successful if perseverance is seen as a necessity and if the host provider reminds the person that the relationship will not end the first time difficulties or conflicts are encountered.

MARIA CASIMIRO

Program Manager, The Center for Health Care Services, Converse, TX “What I learned from the PDL experience is learning how to advocate for people with more complex needs starting with the person and ensuring their support group/advocate/staff/family members understand what it means to prompt person-centered practice— thinking of resources and solutions for the person that fit their individualized needs.”

CREATING CULTURE CHANGE ON CAMPUS: BUILDING AN ALLIANCE OF ADVOCATES

BY TAYLOR FIDLER

In the next few years, thousands of young adults, who identify in being neurodiverse, will be seeking postsecondary supports upon graduation. Many of these students will pursue college. I have had the opportunity to work with this population of wonderful students in the college setting for the better part of a decade. There is more of an emerging trend for this population to be understood and valued for their neurodiversity, and I believe we should all help in allowing for these students to help shape the culture of our campuses and our society as a whole.

Currently, students must adhere to many norms and standards of what is or is not acceptable on a campus setting. This ranges from how to socialize, to intricate procedures and rules. Those norms are being challenged and the neurodiverse community, and advocates of this population can create a positive shift from which everyone can benefit. The potential curb effect in truly listening to these students could have massive, immediate, positive effects for the entire higher education landscape. What happens when we invite all stakeholders to the conversation and discover ways to deliver more explicit course design, explore ways to better understand the value in how differently-minded individuals approach processes, and remove stigmas that may place people at a disadvantage in the current busy communication patterns that campuses so often present?

The impact could have immediate benefits for everyone involved. Students could feel more comfortable in navigating a complex and fast-paced college environment. Staff and faculty that also identify in being neurodiverse would also find value in a more inclusive setting, and it could potentially affect overall wellness on campuses as there has

been an increase in mental health needs across the country. But it starts with building alliances with all parties. It starts with amplifying voices, advocating for change, and addressing the positive implications for acceptance and awareness rather than reacting to the ‘issues’ that this population present to the existing status quo. That is why I’m exploring collaborative efforts with students, faculty, and staff across campus. We will be inviting people to the table, most importantly those who identify in being neurodiverse, and creating spaces for trainings, discussions, and research that generates a campus-wide network of support for neurodiversity. The idea would be that these conversations, trainings, discussions, and research will ultimately help students, faculty, and staff in understanding, accepting, advocating for, and valuing diverse minds. We will be inviting people to become advocates through the Initiative for Neurodiversity Awareness and Collaboration at Texas Tech, or INACTT. My hope is that this will become a campus-wide network of support for neurodivergent people on our campus and that it will help foster a movement of inclusivity in which everyone will benefit.

Program Director, Connections for Academic Success and Employment (CASE), Burkhart Center for Autism Education and Research, Texas Tech University, Lubbock, TX “My goal in working on my leadership project is to help create a more inclusive environment and positively impact campus culture to be a more understanding and accepting place for students, staff and faculty that identify in being neurodiverse.”

TAYLOR FIDLER

THE DSP LEARNING HUB

BY ASHLEY FLEMING

For an extended period of time, Direct Support Professional (DSP) turnover has been high, exacerbated by the pandemic. My goal was to increase DSP satisfaction, decrease turnover, and empower DSPs to provide high quality care. I started the DSP Learning Hub at Down Home Ranch. We have access to National Alliance for Direct Support Professionals (NADSP) certification programs as well as Open Futures Learning.

To begin, I am walking our current eligible DSPs through the NADSP level one certification and creating a template for future DSPs to access the process should they choose. Down Home Ranch can provide monthly bonuses, as well as a lump bonus upon completion of the program. The certification process consists of weekly hour long in-person watch parties as well as quarterly four-hour long competency workshops. DSPs will also watch Open

Futures Learning “side by side” videos with the individuals they support for 30 minutes a week. The certification process will take a full year, complete with a graduation.

DSPs learn to provide competent care that is rooted in ethics. They are also rewarded with financial incentives for progressing through the program. In the future we are hoping to have DSPs progress through levels two and three, as well as our Front Line Supervisors complete the Front Line Supervisor Training. The Hub should also be a place to develop a positive rapport with coworkers, further increasing job satisfaction. The long- term hope is that those providing care will be viewed as the skilled professionals they so clearly are, and be paid accordingly. PDL has proven to be a guide in helping process how to effectively advocate for DSPs, which is the work this project supports.

ASHLEY FLEMING

Residential Manager, Down Home Ranch, Elgin, TX “I am a Front Line Supervisor and can speak to the issues experienced in residential settings. I chose PDL because I wanted to learn more about the experiences people with disabilities and their allies had in other spaces. With a more well-rounded perspective, I will be able to better advocate for a population I am deeply committed to.”

RETHINKING ASSISTED EMPLOYMENT: EMPOWERING LEADERS THROUGH EDUCATION AND GROUP SUPPORT

BY ERINN GRABER

Employment communities across the nation are seeing a push towards developing more diverse, equitable and inclusive cultures. However, this evolution has been largely limited to gender, race, and ethnicity. Where do people with disabilities fit into the employment community? People with disabilities represent a mere 6% of the Texas workforce. Those employed are often finding themselves stuck in entry-level positions, facing a lack of support from their leaders, and with little opportunity for career growth. There are multiple supported employment programs for individuals with disabilities, which focus mainly on the development of job readiness skills, job placement, and job retention. However, there is often a gap in the support and education provided to the employer and supervisor. Supervisors often lack the knowledge of how to adapt to unique needs and defer to an offsite supported employment specialist. This disconnect results in a lack of onsite support many employees with disabilities need.

My project proposes a new support model for leaders who want to increase their understanding of working with employees with disabilities, learn how to create adaptive and accessible workspaces, utilize resources available to them, and gain support

from other leaders in the community. This project proposes a 6-10 session leadership development course, which focuses on the three main areas of disability leadership, disability education, and peer support and networking.

This project was built on the belief that supporting leaders in the development of disability awareness will equip them to play a more active and meaningful role in the mentorship of their employees, resulting in increased opportunity for employees with disabilities. Supervisors who complete the program will receive a certificate of completion and digital badge for resume development. In addition, this project also proposes organizational incentives to encourage willingness to support leaders’ access and involvement in the course.

Program Manager LTC/IDD Services, The Center for Health Care Services, Cibolo, TX

“I am passionate about developing programs that break down barriers for individuals with disabilities. I believe everyone should have the opportunity to pursue their dreams and live life to the fullest. The Partners in Disability Leadership course has opened my eyes to much of the disability rights work that is happening at the local and national levels. It has also given me the toolset needed to advocate for change and better develop communities of support.”

ERINN GRABER

RIGHT ON TIME TRANSITION

BY NATOYIA HARRIS

Natoyia Harris is a Licensed Clinical Manager STAR Kids Aetna Better Health. She has served the community in various roles addressing the needs of the most vulnerable populations for over 20 years. Natoyia’s Leadership project focused on the transitional needs of members ages 18-21 years old. The project identified a need to provide a one-stop website specific to the transitional needs of these members to help provide resources and/or supports. The resources and/or supports include benefits, provider search, vocational, community transitional teams, support groups, etc. The project identified two recommendations to help streamline the process:

1. Provider link for Primary Care Physicians and/or Specialists that only serve adult members; and

2. Online email communication with 24-hour turnaround time managed by the transitional team to answer questions.

These two recommendations provide a ‘right on time’ response to assist members and/or legally authorized representatives in obtaining information to help navigate the challenges presented when a member turns 18 years old.

NATOYIA HARRIS

STAR Kids Manager, Clinical Health Services, Aetna, Grand Prairie, TX

“The leadership program has been an exceptional learning experience, learning from presenters and/or peers. Helen Keller said “Alone we can do so little, together we can do so much.” This quote summarizes my experience and the importance of agencies working together to address the various barriers that impact serving individuals with disabilities.”

IMPLEMENTING A STATEWIDE INTELLECTUAL AND DEVELOPMENTAL DISABILITIES COORDINATING COUNCIL: LESSONS LEARNED FROM THE STATEWIDE BEHAVIORAL HEALTH COORDINATING COUNCIL

BY DR. COURTNEY HARVEY

House Bill (H.B.) 4571 was proposed during the 87th Legislative Session, Regular Session, 2021, and proposed the development of a Statewide Intellectual and Developmental Disabilities Coordinating Council (IDD Coordinating Council). H.B. 4571 did not advance to enrollment.

In 2015, a similar council was established with a focus on behavioral health funding, policy, and services called the Statewide Behavioral Health Coordinating Council (SBHCC). Assessing the implementation progression of the SBHCC may be beneficial to enhancing the framework for an IDD Coordinating Council that will yield desired outcomes related to funding, policy, services and supports.

Associate Commissioner/Mental Health Statewide Coordinator, Health and Human Services Commission, Austin, TX

“If we simply give ordinary people equal opportunity, quality education, and a fair shot at the American Dream, they will do extraordinary things.”

DR. COURTNEY HARVEY

SIMPLIFYING THE SPECIAL NEEDS JOURNEY: INFORMATION SESSIONS FOR CAREGIVERS NAVIGATING COMPLICATED TERRAIN

BY JAMIE HAVENS AND NATALIE HENDRIX

Despite the best intentions by LIDDAs, educators, and doctors, there remains a glaring gap in the education and information being provided to the parents and caregivers of individuals with special needs. Even when caregivers are educated on one or two benefits, they are often not given the full picture of what is available and how to best protect their vulnerable loved ones in the future. This is especially problematic in West Texas, where IDD resources are scarce. Access to state and federal entitlements begins at the moment of diagnosis for those with an intellectual or developmental disability, yet many make it into early or even late adulthood before they and their families know to seek financial support. The fallout from this delayed education can be significant. The goal of our project is to close this gap in the South Plains. While the problem is significant, the solution is simple: provide comprehensive and accessible education for IDD caregivers.

To address this gap in services, we plan to provide

a series of seminars and webinars for parents and caregivers which address SSI, Medicaid, Medicaid Waivers, guardianship, wills, and special needs trusts. Along with these seminars, we will have detailed handouts on these topics which will be available for seminar attendees as well as on our High Point Village website for anyone to access. These handouts will have links to additional resources for more in-depth information on each topic. Our stakeholders are the individuals and caregivers we serve, and their buy-in is evident by the sheer number of requests we receive weekly for assistance with these complex services. Caregivers often voice being overwhelmed by figuring out where to go for which benefit or support, so the goal is to streamline this process and provide all the information in one place. Our hope is to reach as many families as possible; however, if even one family walks away with a better understanding of these supports and services, the effort will have been worth it.

NATALIE HENDRIX

Social Worker (LMSW), High Point Village, Lubbock, TX

“While I have had a lifelong heart and passion for working with individuals with IDD, I am just beginning my career in this field. My motivation for joining PDL was to become as knowledgeable as I could about the challenges and roadblocks these individuals face as well as what resources and supports are available. Networking with other professionals in this field has been the icing on the cake.”

JAIMIE HAVENS

Program Director, High Point Village, Lubbock, TX

EVERYONE SHOULD KNOW! IMPROVING INTERNAL UNDERSTANDING TO IMPROVE SUPPORTS AND SERVICE

BY JAMES LAUGHMAN

While everyone involved in Partners in Disability Leadership knows various facets and knows their fair share about people with intellectual and development disabilities (IDD), there are many people who need to know more. Having lived experience with people with intellectual disabilities, I often have forgotten there are many people who have not had significant exposure to people with IDD and thus formed opinions about what type of services and supports people with IDD need. This awareness was all so real when my company started to launch our IDD services. AmeriHealth Caritas has a long history of serving underserved and underrepresented populations but had limited exposure to providing supports and services for people with IDD. I was tasked with building out our capabilities and as I started socializing the services and supports need to assist people, I quickly learned there were gaps in knowledge and understanding. I was confronted with the reality that there was a need to socialize basic understanding of people with IDD

as well as what supports and services are needed to help promote a person-centered approach, quality of life, and inclusivity.

To help address this gap, I have set out to collaborate with internal partners to launch an IDD Web page for our organization. This work will be a collaborative effort to include people considered to be subject matter experts and our company communications team. This internal resource will allow our associates at any time to access information to help socialize experiences of people with IDD, typical FAQs, as well as best practices to help support people with IDD. My goals will be to make this as robust as possible and eventually make the page accessible to anyone as we launch for external stakeholders. Knowledge is power, and this is something that everyone should know.

“It has been a true privilege to learn and collaborate with so many people vested in approving the lives of people with IDD who live in Texas. The path to our final projects has incredible opportunities for impact, and the true lasting impact will be our collective voice and action to improve the lives of many.”

JAMES LAUGHMAN

President, PerformCare & ID/DD Solutions, AmeriHealth Caritas, Philadelphia, PA

DISABILITY CULTURAL COMPETENCY: A TOOLKIT

BY LYDIA NUNEZ LANDRY

I feel it is necessary to challenge disability illiteracy at a structural level by advancing a critical disability-informed cultural competency. This moves beyond adjusting individual attitudes or beyond surface concerns about language sensitivity, etiquette, or even the ubiquitous and questionable use of terms like “self-directedness,” “autonomy,” “dignity,” and “person-centered,” phrases that now seem to hold little weight and too often obscure the ableist processes they purport to ameliorate. What is instead required is a sincere disability cultural competency, one that challenges structural ableism and its intersections and medicalized narratives—those narratives marketed as cultural competence, but which work to undermine it. What must be revealed and addressed are the social processes of disablement. Without a thorough and sincere deconstruction of existing narratives, disabled people will continue to be exploited and marginalized objects denied full humanity.

My initial goal was to advance a disabilityinformed toolkit to educate people about the necessity of structural disability competency. I want to provide a liberatory alternative to existing narratives created for but not by disabled people, to challenge widespread dysfunction in disability services, to provide an alternative that informs and advances liberatory disability grassroots organizing. My next project will, therefore, be the creation of an intersectional grassroots activist toolkit to promote a civic engagement grounded in critical disability theory and sound strategic planning. This manual will provide disabled people themselves the tools to collectively advance disability justice.

LYDIA NUNEZ LANDRY

Founding Member/Lead Organizer, Gulf Coast ADAPT, Seabrook, TX

“I feel that it is necessary to challenge disability illiteracy at a structural level by advancing a critical disability-informed competency. This moves beyond adjusting individual attitudes or beyond surface concerns about language sensitivity and etiquette. What must be revealed and addressed are the social processes of disablement. Without a thorough and sincere deconstruction of existing narratives, disabled people will continue to be exploited and marginalized objects denied full humanity.”

MOBILE CHANGING UNIT (MCU) FOR GREATER ACCESSIBILITY AND COMMUNITY INCLUSION

BY RYAN MARKMANN

As a transition teacher for a public school district, I see services that children receive throughout their time in school disappear when the student graduates. Some families are left unprepared and heartbroken while their adult child is faced with additional barriers in becoming an active, involved member of the community.

As a board member of the nonprofit, disABILITYsa, our mission is to educate, advance, and engage individuals with disabilities by creating opportunities and addressing barriers in our community like issues of self-care. Some individuals with ambulatory, intellectual, and developmental disabilities can have challenges finding appropriate access to toileting, preventing participation in activities in the community and often compromising their safety, privacy, and dignity.

disABILITYsa has recently secured funding for a Mobile Changing Unit (MCU) - the first of its kind in the country - that will annually provide fully accessible toileting facilities for those of all ages and socio-economic backgrounds living with a physical, cognitive, or sensory disability in the San Antonio region. As a result, the MCU can provide meaningful

experiences in the community, not just for the individual but for the family and caregiving unit as well. The MCU will increase the ability of local agencies and organizations to improve accessibility initiatives and widen public awareness of barriers faced by those living with disabilities. Greater inclusion in our communities expands voices and perspectives of the disability community and creates a greater society.

As the experience of going through the process of acquiring the MCU that coincided with this PDL cycle ends, in the future we will hopefully see the Mobile Changing Unit work as an impetus for other units to be purchased in major Texas cities, expanding across the country and creating positive change wherever it goes.

“For over 16 years now I’ve gladly spent my career working with individuals with disabilities and enjoy collaborating with others to strengthen organizations and address barriers in the community. The Partners in Disability Leadership program has provided me that environment and opportunity, and I’m grateful for the experience.”

RYAN MARKMANN

Transition Coordinator, Northeast Independent School District, San Antonio, TX

BREWING UP COMPETITIVE INTEGRATED EMPLOYMENT OPPORTUNITIES

BY CAROLYN MCINTOSH

This leadership project connects to a key goal of PDL, which is to increase commitment to selfdirection and full participation of individuals with IDD. The specific goal of the project is to increase commitment to self-direction and full participation of individuals with IDD by increasing integrated employment opportunities for the IDD Community.

The State of Texas has an Employment First Policy. It is the policy of the state that earning a living wage through competitive employment in the general workforce is the priority and preferred outcome for working-age individuals with disabilities who receive public benefits. However, only 6% of the IDD Community is employed in the State of Texas (94% unemployment). I have seen a lot of start-up businesses that primarily employ individuals with IDD. However, there is still a gap of already established businesses hiring individuals with IDD.

The parameters of “Brewing Up Competitive Integrated Employment Opportunities” are to acquire external support from organization such as The Arc of Texas or Texas APSE. I would then

engage with coffee shops and/or roaster that have successfully employed individuals with IDD and/ or whose missions align with the mission of The Arc. Key steps include securing Subject Matters Experts (SMEs) to create training curriculum for both individuals with IDD, shop owners, managers, and their staff. This would support individuals with IDD interested in entering the coffee industry in roles such as Barista or Roaster. The training for the shop owners, managers and staff will ensure that they are working in safe, inclusive, and informed workplaces. Briefing administrators of the HHSC Medicaid Waiver Program and/or TWC Vocation Rehabilitation Program is a critical component as well, so that they become aware of the program and the opportunities it presents.

CAROLYN MCINTOSH

Director of Human Resources, LIM College, Austin, TX

“My goal is to increase the commitment to self-direction and full participation of individuals with IDD by increasing integrated employment opportunities for the IDD Community - one cup of coffee at a time.”

I look forward to obtaining buy-in from key stakeholders for this leadership project and obtaining support. I need support to implement this idea, and the support I am seeking is sponsorship so that when I begin conversations with the different shops, I am viewed as a credible source, and not a random solicitor. Additionally, I could use assistance with learning about the grants process and if this project would be eligible for any grant funding. If this project moves forward, I plan to set up an Instagram Page and Website to share the process of building this program and celebrate outcomes there. Also, I would share successes with the networks of sponsors like The Arc of Texas and Texas APSE and contacts through their established communications so that they are knowledgeable about the program and its progress as well.

ASSESSING MEDICAL-BASED SERVICES FOR BEHAVIORAL AND MENTAL HEALTH ISSUES FOR CHILDREN WITH IDD WITHIN HHSC MEDICAID-BASED PROGRAMS

BY KRISTI NORRELL

All children and young adults (under the age of 21) enrolled in a STAR Kids managed care organization (MCO) receive an assessment, at least annually, using the STAR Kids Screening and Assessment Instrument (SK-SAI). My project is to improve the training for Registered nurses who complete the HHSC SAI for children with IDD and behavioral health diagnoses. This assessment is intended to promote a better quality of medical care for Texas children. Registered nurses who perform these health assessments for HHSC Medicaid-based programs have very little training on IDD and behavioral health issues.

My next step is to inquire with HHSC Star Kids policy program about this training issue. There are professional organizations such as the Developmental Disabilities Nurses Association (DDNA), American Association on Intellectual and Developmental Disabilities (AAIDD), and American Academy of Developmental Medicine and Dentistry (AADMD) that support continued development of nurses caring for individuals with IDD. Nursing

Child Assessment Satellite Training (NCAST) is also a good recourse. These national associations and trainings may be able to provide additional training for these assessing nurses.

The federal Developmental Disabilities Assistance and Bill of Rights Act (DD Act) of 2000 defines a developmental disability as a severe chronic disability of an individual that is attributable to a mental or physical impairment or combination of mental and physical impairments that manifests before age 22. We must improve the service delivery to these medically fragile children in their early years. Having front-line staff well trained will help prioritize interventions and guide a plan of care. An important takeaway from the PDL program is that person-centered practice is the most crucial assessment tool to provide integrated care.

Nurse Manager IV, Health and Human Services Commission, Pattonville, TX

“I have a common working goal to better the lives of Texans living with disabilities. To reach these goals we need to understand opportunities that will positively impact these individuals and their communities. Health and wellbeing are important factors in the overall success of our various communities and our state. This program will help me realize this goal through knowledge and resources that I have learned.”

KRISTI NORRELL

MEDICAID WAIVER SERVICES: ERROR-PROOF PROGRAM ADMINISTRATION AND THERAPY OPERATIONS MANAGEMENT TRAINING

BY STEPHANIE O’SILAS

Therapy Operations Management training is now available in response to the pain points that plague efficient and quality service delivery of communitybased and case management organizations:

1. Lack of administrative/operational knowledge about therapy operations

2. Long and extensive waitlists for consumers in Texas

3. Lack of knowledge and information involving therapy compliance standards

4. Lack of billing/reimbursement competencies by providers related to therapy services

5. Lack of access and ability to mobilize therapy providers and teams

6. Lack of knowledge of Medicaid Waiver standards in relation to habilitative therapy services

7. Lack of access to support persons and resources to assist with therapy operations

The goal of this training is to support communitybased services and case management agencies with resources and training related to therapy operations management. There is currently no available training on the market. Lack of access to such knowledge contributes to providers being unable to serve Medicaid Waiver consumers effectively and efficiently. This lag contributes to extensive waitlists throughout Texas, reduced patient outcomes and quality of life, and budget underutilization.

This project will be delivered in the form of paid and pro-bono in-service presentations delivered in a consulting model. The presentations will be delivered using Professional PowerPoint and/or via in-person or virtual coaching. The presentations will be delivered by trained experts in therapy operations. Stakeholders include the owners and program directors of case management and community-based service organizations contracted with Medicaid Waiver services. The project idea has received widespread enthusiasm and buy-in from administrators within this target setting.

STEPHANIE O’SILAS

Chief Executive Officer, Champion Rehabilitation and Support Services, PLLC, Plano, TX

“Knowledge is never complete: two heads are better than one.” Igbo Proverb.

In the area of implementation, I will spearhead an education campaign across the next 3-6 months and reach out to a goal of 30 local companies to offer this educational training before the end of year 2023. Each year following, we will target educating 30 administrators/owners to help reach our goal of educating Texas program administrators. We will continually refine the education and training offered by our program. We hope the quality of the program will eventually market itself, and we hope to be instrumental in championing education for this specialty program area.

LET’S GET SOCIAL! LIKE, FAVE, FOLLOW, COMMENT, AND SHARE

BY SUSIE SIMS

I recently discovered social media; specifically, TikTok. I was immediately drawn in, intrigued and captivated by this creative platform. I saw videos of people dancing and singing. I saw dogs, cats, and farm animals with things to say. I saw young people, old people, people of different race and gender all joining the platform to share something with TikTok audiences.

But after countless hours scrolling, I noticed very little representation on this platform of the disabled community, and what I saw was often not realistic. I don’t like when the “sympathy card” is played to gain attention for disabled people. I then began to have some crazy thoughts and ideas. I asked myself: Could I do that? Could I create TikToks to educate and inspire others? Would people be interested in the life of a single working mom and her adult son with disabilities? Could I inspire other caregivers and persons with disabilities to participate in their community? Could I help raise disability awareness and help normalize disability in the community, all communities?

Right about then, I received an email from The Arc of Texas describing their upcoming Partners in Leadership Disability (PDL) program opportunity. Could the PDL program provide the training and support I needed to start creating educational and inspiring TikToks? The Arc’s PDL program seemed to just magically appear right when I needed it. I was in!

My goal upon entering the Partners in Leadership Disability program was to create TikToks to educate and inspire others with disabilities and their caregivers to be a part of their communities. My dream is to normalize disability within the community, all communities. My goal remains the same today.

I want the world to know disabled persons and their caregivers are here to stay, and we belong to our communities. The biggest confirmation I had participating in PDL is that others are out there making changes. If we all contribute and make small changes, big changes can come. The most important thing I want people to know about my leadership project is that it remains a work in process, and I remain optimistic about its outcome. My motto is to work hard, have fun, and be happy. I intend to do just that as I share my Tiktoks with the hopes of educating, inspiring, and contributing towards normalizing disability in the community, all communities.

Advanced Specialist, Department of Family and Protective Services, Sugar Land, TX “Many times, in order to survive, we have to start a change process. We sometimes need to get rid of old memories, habits, and past traditions. Only freed from past burdens, can we take advantage of the present. Something needs to change and it’s me.”

SUSIE SIMS

“EVERYONE HAS SOMETHING TO CONTRIBUTE” AN INTERVIEW WITH KATHY BUCKLEY

BY WENDY WARD, EDUCATION & LEADERSHIP SPECIALIST

On November 18, 2022, Kathy Buckley, awardwinning actress, speaker, author, and comedian with hearing loss, joined Partners in Disability Leadership 2022 graduates for an hour of laughter, stories, and inspiration. I later followed up with her for a frank conversation about the power of humor, and the influence of labels that are placed on people with disabilities.

HOW DOES HUMOR GIVE VOICE TO PEOPLE WITH DISABILITIES? HOW DO YOU VIEW THAT?

I think personally from my experience working with people with challenges all over the world, I think what happens is that you – people with disabilities have to find an identity. You see, when a person with a disability grows up, society is always putting on a label like “you can’t” or “you’re not going to be able to,” “you’re going to be limited,” “you won’t be able to do this,” “you won’t be able to do that” and so as their growing up, their belief system becomes limited so they don’t challenge anything…When they find out that all the “cant’s” and “you’ll never be able to’s” was a bunch of bull, it doesn’t pertain to them, and you don’t have to wear it because somebody said it…I grew up with other people’s words and making them my own, and I found out that those words didn’t belong to me in the first place. So, when somebody has a challenge, they have to know who they are as a person…Everybody knows how to live with a challenge. It’s not a challenge for them. The challenge is society’s ignorance and limited beliefs…So society is our battle, not our disabilities. It’s kind of normal. People see somebody, and it’s automatic judgement. What I don’t understand is why someone using a wheelchair is someone you have to avoid?

KATHY BUCKLEY

Kathy Buckley is a motivational speaker and best-selling author who uses comedy to help audiences understand their gifts, their peers, and their choices. A five-time American Comedy Awards Nominee for Best Stand-Up Female Comedienne, Kathy interweaves humor and storytelling to help people bring more compassion to others— and to themselves.

INTERACTION WITH AN AUDIENCE?

I notice that when I do questions and answers, I know what my needs are. To keep me active with the hearing world. I always call on someone: “Lookit, would you do me a favor and would you be my ears because I’m not going to hear the back of the room.” I always call on someone to be there for me, and people are willing to do it. All you have to do is ask. There’s no harm in asking for help because people do want to help. I don’t find it – it’s part of who I am, it’s part of what I need to survive and communicate with, so why won’t I ask for it?

YOU OFTEN HEAR THAT HUMOR IS USED AS A COPING STRATEGY. HAVE YOU USED HUMOR IN THIS WAY AND IF SO, HOW HAS IT HELPED YOU?

For me, the funny thing, when I went to my class reunion, people were like “Oh my god, you were always so funny.” I was so sad in school. I don’t remember making people laugh. But I did learn early on that if I did the talking, I didn’t have to do the listening, and I wouldn’t look like a fool. Because I misinterpret. And so, I would just go ahead and try to joke around or make a comment. If I carry the conversation, I don’t have to listen. And I’ve been in my board meetings because I have schools for low-income families of deaf and hard of hearing children and there’s like 12 of us at a table, and then they look at me and I say something, and then they give me that look like “What the [heck] are you thinking?” And I’m like “Ooookkaaayyyy, what were you talking about?” Because you know, lip reading is 75% guessing if you don’t know where the topic is going. But again, until you know who you are as an individual, accept your flaws. I’m still having a hard time with the cellulite to be honest with you, but the rest I’ve got down tight!

IS THERE ONE THING THAT PEOPLE SAY OR DO THAT JUST MAKES YOU FEEL DISAPPOINTED OR ANYTHING THAT BOTHERS YOU ABOUT ASSUMPTIONS?

Well for me, one thing that bothers me is people talking while they’re walking away from me. But I understand why they do it. They don’t like me! No, really, they do it because I speak so well that they

forget that I don’t hear, so it makes the little girl in me go “Ouch.” You know, because now I feel cast out. Or if I’m with a group of people and somebody says something and I’m like “What did they say?” and the answer is “I’ll tell you later.” Well, I know I’m not going to get it later. If I don’t get it now, it means I’m out of the conversation for the rest of the evening or whatever. So, there are times when the little 5-yearold deaf girl will rise up and go “Hmmm, it hurts.” But my biggest pet peeve for people with challenges is the judgement. There is no need to put limitations on another human being just because you don’t think you could handle it if you were in their situation. We all know how to handle ourselves. And don’t say “You can’t do something…” Who is anybody to put limitations on anybody’s life, you know…So I think my biggest pet peeve is the labels that no one should put on another human being whatsoever. Ask them: “What’s your passion? What do you like? What makes you happy?” You know? “What put you in a great mood? What do you want to do with the rest of your life?” I would love every person with a disability to know their self-worth, their value. Because I believe everybody, I don’t care what the challenge is, has something to contribute.

WHAT IS THE MOST IMPORTANT PIECE OF ADVICE YOU WOULD GIVE INDIVIDUALS WITH DISABILITIES?

My challenge is society. My challenge is connection. The only disability I have today are attitudes. And sometimes I have to fight my own. But I don’t want to use my disability as an excuse not to move forward in life. I used it too long, for too many years, as an excuse not to go forward just because I was carrying the labels and the words that other people gave me. Little did I know they don’t really fit me. So yeah, there are things I cannot do, and that’s ok. But there are things I can do, and what I suggest for anybody with or without a disability…I really want people to look in the mirror and see the gifts that are in them now. Lookit, we live in our bodies, but our spirits live in this world, and it’s our spirit that rises to the occasion.

WHAT IS IT LIKE BEING A PERSON WITH A DISABILITY IN A PROFESSION THAT REQUIRES CONSIDERABLE