Supporting Families Through the Transition Years

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 http://autismhandbook.org

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 • Establishing behavioral objectives and measuring progress • Arranging effective lessons • Using reinforcement • Prompting strategies • Teaching communication skills • Teaching social skills • Planning and teaching community skills • Addressing unwanted behaviors

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