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

Findings:

≈ 20,000 people with autism in Pennsylvania in 2005

Given the trend, that number has reached 25,000-30,000

Pennsylvania Autism Census Project

13.1%

55.9%

19.6%

4.1% 7.1%

0% 10% 20% 30% 40% 50% 60%

0-4 years 5-12 years 13-17 years 18-20 years 21+ years

Percent of Individuals with Autism in Pennsylvania in 2005 by Age Group

1,407

3,326

8,450

15,670

3,825

10,140

19,587

0

5000

10000

15000

20000

25000

2005 2010 2015 2020

# of Adults with Autism in PA

no new diagnosis

assuming new diagnoses proportional to current rate

2005: just over 1,400 adults with autism

2010: 179% increase to 3,825

2015: 621% increase to 10,140

2020: 1,292% increase to 19,587

PA Autism Census Project

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

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

AAW & ACAP: Core Differences

What have we learned so far?

And what does it mean for transition planning?

Dual Diagnoses

Lesson: Need for acknowledging or identifying co-occurring mental health issues

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

Lesson: Need to address behaviors that are less overt, dangerous and/or destructive

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

Lesson: In particular, parents are interested in maintaining a schedule and supports typical of school.

Implications/Consideration: Educational and post school activities that are intellectually stimulating may be attributed to a decrease of behavioral traits (Taylor & Seltzer, 2010).

Lesson: Core deficits of autism (social, communication, behavioral issues) greatly impact the success one has in obtaining and maintaining employment.

Implication/Consideration: Adults with autism are among the most costly people to serve in the vocational rehabilitation system (Cimera & Cowan, 2009).

Employment Success

Lesson: Need to consider how to support individuals who express healthy and deviant sexuality.

Implication/Consideration: Individuals with ASD show the same sociosexual interests and the same sexual needs as their peers (Henault, 2006).

Sexuality and Family Planning

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).

Family Involvement

Lesson: Issues specific to people with ASD that impact success in work, home and community need to be understood and systematically addressed

Implication/Consideration: Providers need autism specific training and ongoing support to meet the needs of individuals with autism (Pennsylvania Autism Needs Assessment, 2011)

Capacity to Support People with ASD

Lesson: Parents and participants are often hesitant to take risks necessary for personal growth

Implication/Consideration: Taking risks means respecting each individual’s autonomy and self-determination 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).

Risks and Restrictions

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

Residential Need

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

BAS Adult Program Update

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

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