1. Supporting Families Through the Transition Years
Todd Harris, Ph.D.
Director
Devereux Pennsylvania’s Division of Autism Services
Devereux’s Center for Autism Research and
Education Services (CARES)

2. Presentation Overview
Review issues related to familial stress
Describe what we believe to be the role of professionals with families going through the transition process
Review strategies for supporting families

3. Family Stress and Challenges
Research tells us that families with a child with an autism spectrum disorder (ASD) experience much higher stress levels than other families (including those with Down’s Syndrome and other developmental delays, chronic illnesses, and other types of disabilities).

4. Family Stress and Challenges
Sources of stress include (but are not limited to):
Financial demands
Behavioral challenges
Decisions regarding treatment and placement
Issues related to siblings and extended family members
Co-morbid medical and psychiatric issues
Social isolation with other families
Frequent situations that are perceived as unpredictable and uncontrollable
Frustration and frequent contact with agencies and service providers
General fatigue

5. Family Stress During the Transtion Years
In addition to the stressors mentioned previously, families may also experience additional sources of stress during the transition years including:
Puberty and related human sexuality issues
Behavioral issues that sometimes intensify and are more difficult to manage
Greater social isolation with same-age peers
Emergence of co-morbid conditions (such as anxiety disorders and other psychiatric conditions, seizure activity)

6. Family Stress During the Transtion Years
Uncertainty about the future as their child with autism enters adulthood:
Where will he (or she) live?
Where will he work? Will he be able to hold a job?
Will he be able to go to college?
Who will be his friends?
How will we fund needed supports?
Who will care for him when we are no longer around?
How can we ensure that he has a high quality of life and is happy?

7. Reducing Stress Levels in Families
Research has illustrated that family stress can be reduced by:
The development of a comprehensive social support system
By receiving accurate information about services and systems
By acquiring skills that will enhance abilities to be effective instructors and to manage behavioral challenges

8. How Can Professionals Provide Support?
By targeting meaningful skills for adulthood across settings (including the community and employment sites)
By being knowledgeable about transition and adult issues:
Best practices for transition
Resources and funding streams
Post-21 program options in the area that you work
Related legal and financial issues
By sharing your knowledge with families and discussing these issues with families at least annually once a child becomes 14 years old (or even earlier in many cases)

9. How Can Professionals Provide Support?
By organizing and routinely sharing resources with families (literature, web sites, presentations, etc.)
By assisting with action-oriented planning meetings (person-centered futures planning)
By teaching them to use interventions that work well with their child to enhance their ability to:
Generalize previously acquired skills
Teach new skills that are specific to their home environment
Enhance their child’s successful inclusion into community settings.

10. Past and Current PDE Grant Activities
Years 1 and 2: Enhance our transition program through staff training and developing specific tools including:
Portfolios
Specific lesson plan summaries
Preference and skill assessment tools
Situational assessments
Person-centered futures planning
A handbook for families on transition issues
Year 3: Partnering with Central Bucks School District and Lancaster-Lebanon IU 13, we demonstrated that our program could be replicated in regular education high school settings

11. Past and Current PDE Grant Activities
Year 4: This past year was spent improving the mechanisms for better supporting CARES families with outreach across the region:
Completion of a needs survey and knowledge assessment
Development of a web-based wiki based upon our family handbook on transition issues A series of seminars for families on transition issues
Implementation of a structured parent education curriculum

12. Supporting Families and Students Through Person-Centered Futures Planning
Person-centered futures planning (PCFP) is an ongoing process that brings together a group of committed individuals to help an individual with special needs plan and create a life that is personally fulfilling and productive
This process can start at any time, but should begin minimally at 14 years

13. Supporting Families and Students Through Person-Centered Futures Planning
The initial PCFP meeting at CARES typically takes two to three hours; subsequent annual meetings usually last between one and two hours
We try to have this meeting about one month before the IEP; we have found that this process can help plan transitions IEPs

14. Supporting Families and Students Through Person-Centered Futures Planning
Should the student attend the meeting?
This depends on many variables, including the students communication abilities (receptive and expressive) and their comfort level with sitting in a meeting
Whenever appropriate, we encourage the student to participate as much as possible
Ultimately, this decision rests with the family and the student

15. Supporting Families and Students Through Person-Centered Futures Planning
If the student does not attend the meeting, it is critical that participants are thoroughly familiar with the student’s strengths, interests, and likes and dislikes
In addition to parents and the school team, other attendees can include siblings, extended family, friends, involved agency personnel, and others that the family invites

16. Supporting Families and Students Through Person-Centered Futures Planning
The following will be identified by the end of the meeting:
Important relationships that the student has developed across settings
Likes and dislikes related to social interactions, recreation and leisure, employment settings, community inclusion, sensory input, and environmental variables
Skills and supports needed for communication, social skills, and behavior

17. Supporting Families and Students Through Person-Centered Futures Planning
Meeting outcomes will also include:
A description of medical and physical needs
The student’s and family’s vision for post-21 living, employment, social interactions, and community inclusion
Goals and objectives for employment education
An action plan for the upcoming year
See our wiki for our format

18. Results From Our Family Survey
Who Responded
209 families across the state (31 % had a child between 14 and 17 years)
15% had more than one child with an ASD
40% of families had a child with autism; 30% had a child with PPD-NOS; 15% had a child with Asperger Syndrome
45% had a child who was placed in their school district; 28% were placed in a private school; 12% in an IU classroom

19. Results From Our Family Survey
Areas of reported confidence
Respondents were most confident in:
Including their child into community settings
Managing behavioral issues
Effectively teaching new skills
Respondents were least confident in:
Identifying and planning employment options
Identifying and planning housing options
Identifying and planning adult program and college options

20. Results From Our Family Survey
Topic areas that families were most interested in learning more about (in order of interest)
Post-21 employment options
Teaching social skills
Options for housing
Finding and securing the right funding stream(s)

21. Results From Our Family Survey
Results from our knowledge assessment
There were no real differences in knowledge based upon the age of the child with an ASD, child placement, or geographic location

22. Results From Our Family Survey
Results from our knowledge assessment
Areas that parent were most informed included:
Termination of wraparound services in the post-21 years (77% correct)
No IQ requirements with the autism waiver (75% correct)
Legally required action to maintain guardianship at 18 years (66% correct)

23. Results From Our Family Survey
Results from our knowledge assessment
Areas that parent were least informed included:
Typical duration of OVR services (32% correct)
Age eligibility for the PFDS waiver (36% correct)
Absence of entitled services in the post-21 years (39% correct)

24. Getting Information to Families: Our Transition Wiki
As our students became 10 years and older, we quickly realized that critical information on transition:
Was not organized in one document, but rather required searching many different sources
Was not written in a manner that was easily understood

25. Getting Information to Families: Our Transition Wiki
Based upon this finding, we created a Family Handbook on Transition Issues and Services
Within 3 months of publication, our handbook was already out of date due to changes in services and funding
We to decided develop a web-based “wiki” on transition service that can be updated as needed

26. Getting Information to Families: Our Transition Wiki
Let’s take a look at our transition wiki

27. Supporting Families and Students Through a Structured Parent Education Curriculum
Program Goals:
To give families the necessary knowledge and skills to be more effective instructors with their child with an ASD
To enhance the skills of our students across home and community settings

28. Supporting Families and Students Through a Structured Parent Education Curriculum
Program Components:
Monthly Workshops and Meetings
Monthly Assignments Related to Skill Building
Home Visits From Program Staff
Review assignments
Answer questions and concerns
Observe teaching sessions and give structured feedback

29. Parent Education Curriculum Workshop Topics
Teaching communication skills
Teaching social skills
Planning and teaching community skills
Addressing unwanted behaviors
Establishing behavioral objectives and measuring progress
Arranging effective lessons
Using reinforcement
Prompting strategies

30. Supporting Families and Students Through a Structured Parent Education Curriculum
Performance Feedback Component
Why is this component critical?
Based upon the work of Aubrey Daniels and others, staff were trained on how to deliver feedback effectively emphasizing:
Be positive (using the 3 to 1 praise to corrective feedback ratio)
Be immediate
Use specific examples
Let’s look at our performance feedback tool

31. The Outcomes of Our Parent Education Curriculum: Group Data

32. The Outcomes of Our Parent Education Curriculum: Example of Individual Data

33. The Outcomes of Our Parent Education Curriculum: Example of Individual Data

34. Questions