TRANSITION PLANNING FOR STUDENTS WITH PWS OPTIONS AND OPPORTUNITES

1. TRANSITION PLANNING FOR STUDENTS WITH PWSOPTIONS AND OPPORTUNITES Presented by Stacy Ward, M.S. Director of Family/Medical Support & Special Projects, PWSA (USA) Barbara (BJ) Goff, Ed.D. Professor, Special Education, Westfield State University, MA

2. THE TRANSITION YEARS

3. Transition Timeline Elementary school: Discover student’s interests and strengths → Middle School: Student articulates their dreams and goals for their future → Ninth Grade: Student engages in self-exploration and explores the process of career decision making → Tenth Grade: Studentbegins to research career interests, narrowing their focus to a cluster of careers and related skills → Eleventh Grade: Student develops skills associated with the career cluster of interest → Twelfth Grade: Student enhances those skills by engaging in work-related learning experiences and finalize post-secondary plans → Successful transition to post-secondary life!

4. Legal Mandates Beginning no later than the first IEP to be in effect when the student turns 16 (or younger), a transition plan must be developed, included in the IEP and be updated annually. *Many states mandate that transition plans be developed at age 14 or 15. What is it in your state?

5. THE IEP MUST INCLUDE… • …appropriate measurable post-secondary goals based upon transition assessments related to training, education, employment and, where appropriate, independent living skills. • …the transition services needed to assist the student in reaching those goals [34 C.F.R. 300.320(b) and (c)] [20 U.S.C. 1414(d)(1)(A)(i)(VIII)]

6. TRANSITION SERVICES “…activities focused on improving the academic and functional achievement of the child with the disability to facilitate the child’s movement from school to post-school activities, including post-secondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living, or community participation…” (Individuals with Disabilities Education Act)

7. What that means… As early as possible (ideally upon entry to High School)… School personnel, families and the student design an appropriate plan of study and training that prepares the individual for further education or job training after High School. It should also consider social skills and everyday functional skills necessary for living as independently as possible.

8. Types of Transition Plans

9. High School These are often the most difficult years. First, you must decide early on if your son/daughter is to graduate in four years with a high school diploma or remain in school until 21 or 22. • How do we prepare our sons and daughters with PWS for adult life? • What expectations are reasonable? • What is available within the school program to prepare the young person for this transition? • What services are available to support the young adult once he or she leaves school?

10. TRANSITION TEAM In addition to the academic team,* the individual & family; representatives from community or government agencies should be included: • Case management • Vocational services • Residential services • Recreation and leisure services • Transportation services • State Vocational Rehabilitation • State Dept of Developmental Disabilities *Your school may or may not have a dedicated transition specialist. If yes, they can help you identify services. If not, you may need to discover and explore post-secondary options on your own.

11. “Nothing about me, without me”

12. ASSESSMENT AREAS • Community skills • Domestic skills • Social/ Self-Determination skills • Adaptive Behavior/Independent Living skills • Sexuality and Self-Esteem • Academic skills • Vocational skills, interests, and needs • Living Arrangements • Leisure/Recreation Find links to assessments on slide # 36: Assessment Resources

13. ISSUES WITH ASSESSMENTS • Cursory • Not User Friendly • Not matched to ability level of the student who might require non-verbal, picture based format • Simplistic • Interest focused only (not addressing aptitude and ability) • Not criterion based • Not comprehensive/inclusive of the many areas needing to be assessed to determine meaningful goals and related services.

14. POOR ASSESSMENT=POOR OUTCOMES Ever sit in a transition planning meeting and the student is asked what he or she would like to do for work? The replies often include career choices like veterinarian, firefighter, dance and sing in musicals on Broadway, police officer, teacher... Each and every one of these responses needs to be taken seriously, but thoroughly explored with the student-not simply taken at face value and written into the appropriate blank on the transition plan with a wink and a nod and moving on.

15. NO DREAM TOO BIG • He loves animals, but does he know that vets have to put animals down? Does he know that vets perform surgery and it can be pretty messy? • She loves musical productions and knows all the words to several shows, but does she know that being on Broadway means moving far away from home to NYC where she would need a lot of money, live in one room with a shared bath down the hall, and have to learn how to take subways?

16. MAKING IT REAL • Part of assessment should be providing all the information needed to make informed decisions. This could mean showing videos of a person actually performing the job… Meeting with people who do the job…Researching the job for qualifications and requirements. • It just might be that volunteering at an animal shelter, dog walking, or pet grooming is just as satisfying. • Perhaps working with the local theater company, helping out backstage, handing out programs, and even playing a small (or big) role in a performance is a perfect fit.

17. PERSON CENTERED PLANNING • Who are the people who will help her reach her goal? • What transition services are needed to support her in achieving her goal? • What skills does she need to master in order to reach her goal? • What activities need to be accomplished in order to reach her goal? • When will these activities occur? • Where will the skills be developed? • How will the training be provided? • How will we know when it’s time to say: “You’re ready, Go for it!”

18. TYPE AND LOCATION OF SERVICES • Will your child benefit from an academic program for most of the day? • Will your child benefit from a vocational program for most of the day? • Will your child benefit from a Life Skills program for most of the day? • Will these programs be offered within the school, (in integrated or segregated settings) or the community (in various settings)?

19. COLLEGE OPTION FOR 18-22 yrolds • There is a movement to provide a college experience for students who are continuing their public education until age 22: The Inclusive Concurrent Enrollment Initiative (ICEI or typically referred to as ICE) • These students enroll in a participating college (2 or 4 year) ICE program and, with support from their school district, enroll in classes (for credit or as an audit), enjoy the college resources (gym, cafeteria, sports events, clubs…) and simply become part of the college community. For more information and to find out if there is an ICE program near you, go to thinkcollege.net

20. CONSIDERATIONS • If the student is capable of further education in either a 2 or 4 year college or a specialized training program, how will it be paid for and how will access to food and money be monitored? • If the student is capable of competitive employment, who will assist in locating a job and providing necessary job training and support? Will the support be withdrawn over time? Then what? • What about transportation?

21. Considerations…. • If the student requires a sheltered vocational placement, or a day habilitation program, where does one exist? Does the student meet eligibility requirements? Is there a waiting list? Is there adequate funding and transportation? Are the program, environment, and staffing compatible with the needs of the student with PWS? Is the program open to receiving training on the syndrome?

22. Considerations… • Does the student and family desire an out-of-home placement after leaving school? Where does one exist? Is there a waiting list? Does the student meet the eligibility requirements? How is it funded? Is it a specialized home for individuals with PWS? If not, can they accommodate the needs of the person with PWS?

23. FINALLY… • Who knows the answers to these questions? • Where does one go for help? • Does anyone out there in the adult world understand PWS? Without early planning, the student with PWS may find him or herself sitting at home with no work or other meaningful daytime activity and the family required to provide daily supervision.

24. POST SECONDARY EDUCATION/TRAINING • None – student expresses no interest or desire • Student is undecided at this time • Two- or four-year college/university – w/o support • Two- or four-year college/university – with support • Technical/trade school – w/o support • Technical/trade school – with support • Adult education classes • Adult classes for individuals with IDD • Other _________________________

25. VocationalRehabilitation Services

26. EMPLOYMENT/DAY ACTIVITY • Competitive employment – w/o support • Competitive employment – with support (long or short term) • Sheltered employment • Agency-based employment • Self-Employed • Adult training facility (formerly Therapeutic Activity Center) • Day Habilitation • Adult day care

27. JOBS • Competitive Employment: legal offices, business offices, agency offices… …collating …filing …copying …answering phones …mail sorting …data entry

28. WORK…VOLUNTEER • Pet Care …feeding …walking …grooming • Child Care …assistant in a day care center, pre-school, or kindergarten • Elder Care …read mail/books …mobility assistance • Plant Care …garden centers

29. WORK…SELF OR AGENCY BASED • Independent Business …candle making …pet sitting/walking …coupon cutting …home/office cleaning …yard care …recycling

30. SHELTERED EMPLOYMENT Provides an opportunity to earn competitive wages with support • Job within service agency • Enclaves • Job coach

31. SHELTERED WORKSHOP

32. VOLUNTEER OPPORTUNITIES • Animal shelters • Nursing homes • Day care centers

33. LIVING ARRANGEMENT • Live at home with parents or relatives with in home support • Independent living w/ occasional support • Independent living w/ daily support • Supported living (2-4 with daily supports)* • Group home – 24-hour supervision and training* • Group home – skilled nursing care (ICF)* • Foster Care* • Facility-based – personal care home, nursing home *PWS-specific or mixed?

34. LEISURE ACTIVITIES Just as important as work…

35. THE END The future? Why not?

36. TRANSITION/ASSESSMENT RESOURCES • https://www.sotaconference.com/uploads/1/0/3/4/103490714/il-circle-of-support-brief.pdf • https://transitioncoalition.org/tc-assessment-reviews/ • https://www.ocali.org/up_doc/Quickbook_of_Transition_Assessment.pdf • https://www.wcu.edu/WebFiles/PDFs/Tag.pdf • https://transitionta.org/system/files/toolkitassessment/AgeAppropriateTransitionAssessmentToolkit2016_COMPLETE_11_21_16.pdf?file=1&type=node&id=1112&force • https://instrc.indiana.edu/transition-resources/transition-matrix.html • http://www.sped.sbcsc.k12.in.us/ppm/transitionplanning/transitionassessments.html

37. TRANSITION RESOURCES www.pwsausa.org Transition Planning and Resource Guide: for Parents and Guardians of Young Adults (ages 15 and up). Kate Beaver and Barb Dorn, RN, BSN www.thinkcollege.net For information on Inclusive Concurrent Enrollment Initiative (ICEI) college programs for students (18-22) with intellectual and developmental disabilities.