Beyond High School: Lessons Learned from Programs Supporting Adults with Autism Stacy L. Nonnemacher, Ph.D. Senior Clinical Consultant Bureau of Autism Services Department of Public Welfare
Pennsylvania Autism Census Project Findings: ≈ 20,000 people with autism in Pennsylvania in 2005 Given the trend, that number has reached 25,000-30,000 Percent of Individuals with Autism in Pennsylvania in 2005 by Age Group 60% 50% 40% 30% 20% 10% 0%
55.9%
19.6%
13.1% 0-4 years
4.1% 5-12 years
13-17 years 18-20 years
7.1% 21+ years
PA Autism Census Project
2005: just over 1,400 adults with autism
# of Adults with Autism in PA 25000 19,587
20000
2010: 179% increase to 3,825
15,670
15000 10,140
10000 8,450
2015: 621% increase to 10,140 2020: 1,292% increase to 19,587
3,825
5000
3,326
0
1,407
2005
2010
2015
no new diagnosis assuming new diagnoses proportional to current rate
2020
How has Pennsylvania attempted to address this need?
Innovative Services for Adults with Autism ADULT AUTISM WAIVER (AAW)
ADULT COMMUNITY AUTISM PROGRAM (ACAP)
Programs designed to help adults with autism live in their communities the way they want to, based on their identified needs
What are the goals of BAS adult programs?
Increase person’s ability to care for themselves
Decrease family/caregiver stress
Increase quality of life for both the person and the family
Provide specialized supports to adults with an ASD based on need
Help adults with ASD reach their employment goals
Support more involvement in community activities
Decrease crisis episodes and psychiatric hospitalizations
AAW & ACAP: Core Differences Adult Autism Waiver
Priority given to individuals not receiving ongoing state/federally funded services
Available statewide
Participant retains Health Choices; physical health services not included as a waiver service
Choice of an enrolled provider for all services
Does allow for residential 24/7 care if a need is determined through assessment
Adult Community Autism Program (ACAP)
Currently available in 4 counties
ACAP becomes the participant’s health plan
Integrated physical/behavioral health & community services
Keystone Autism Services and their network of providers (e.g. primary care physician) provide most services
At intake, participant cannot require 16 or more hours of awake support
What have we learned so far? And what does it mean for transition planning?
Dual Diagnoses ď ˇ
Lesson: Need for acknowledging or identifying co-occurring mental health issues
ď ˇ
Implication/Consideration: There is an increased risk for depression/ anxiety symptoms in children and adolescents with ASDs regardless of age, IQ or ASD symptoms (Strang, et. al., 2012).
Internalizing Behaviors ď ˇ
Lesson: Need to address behaviors that are less overt, dangerous and/or destructive
ď ˇ
Implication/Consideration: In addition to aggressive behaviors, behavioral support for young children with ASD needs to also focus on social engagement and sustained attention to address internalizing behaviors (e.g., withdrawing) (Hartley, Sikora, & McCoy, 2008).
Reliance on Traditional Models ď ˇ
Lesson: In particular, parents are interested in maintaining a schedule and supports typical of school.
ď ˇ
Implications/Consideration: Educational and post school activities that are intellectually stimulating may be attributed to a decrease of behavioral traits (Taylor & Seltzer, 2010).
Employment Success ď ˇ
Lesson: Core deficits of autism (social, communication, behavioral issues) greatly impact the success one has in obtaining and maintaining employment.
ď ˇ
Implication/Consideration: Adults with autism are among the most costly people to serve in the vocational rehabilitation system (Cimera & Cowan, 2009).
Sexuality and Family Planning ď ˇ
Lesson: Need to consider how to support individuals who express healthy and deviant sexuality.
ď ˇ
Implication/Consideration: Individuals with ASD show the same sociosexual interests and the same sexual needs as their peers (Henault, 2006).
Family Involvement
Lesson: Need to consider importance of family involvement in services and supports.
Implication/Consideration: Support services should not only address an individual’s needs, but also focus on caregiver’s stress and solving daily issues with supporting someone with ASD (Cappe, Wolff, Bobet, & Adrien, 2011; Cramm & Nieboer, 2011).
Capacity to Support People with ASD ď ˇ
Lesson: Issues specific to people with ASD that impact success in work, home and community need to be understood and systematically addressed
ď ˇ
Implication/Consideration: Providers need autism specific training and ongoing support to meet the needs of individuals with autism (Pennsylvania Autism Needs Assessment, 2011)
Risks and Restrictions ď ˇ
Lesson: Parents and participants are often hesitant to take risks necessary for personal growth
ď ˇ
Implication/Consideration: Taking risks means respecting each individual’s autonomy and selfdetermination to make choices for himself or herself, giving people chances to take the risks that go along with ordinary life, which are necessary for personal growth and development (Smull, 2003).
Residential Need ď ˇ
ď ˇ
Lesson: Individuals who need housing may not necessarily be appropriate for the typical group homes and community living arrangements Implication/Consideration: see the Housing Report, Housing Options for Adults with Autism Spectrum Disorder, which can be found on www.autisminpa.org
BAS Adult Program Update
Both programs are serving their maximum number of participants, and will not be able to enroll additional participants. However, we will continue to accept requests for applications.
Applications will not be sent until the capacity to support additional participants is available.
Once either program is able to begin accepting additional applications, requests for applications for that program will be processed in the order they were received.
If you think you may be eligible, or know someone who might be, you are strongly encouraged to request an application by calling the toll-free number: 1-866-539-7689
Visit the new BAS Training Systems Entry Page: www.bastrainings.org Follow the prompts to create a master login account, then get connected to the BAS training sites you would like to use
including the
Virtual Training Center (VTC) The VTC is a free resource for Adult Autism Waiver providers, other professionals, and individuals/families with ASD. Look for:
The Pennsylvania Autism Census Project The Pennsylvania Autism Needs Assessment Reports