1. 22 at 20: A non-traditional Transition story 2. WELCOME This is only ONE STORY Our purpose is to encourage Creative thinking Early planning Research & use of Resources Open communication & collaboration 3. WELCOME stop listening! say I couldnt do that, there are too many obstacles Say this has nothing to do with me or my kidDONT DO Keep an open mind Pick what makes sense Commit to at least one takeaway 4. A Glimpse at Nicky 21 years old, turns 22 in November 2014 Behavioral aggressions began at age 5 Maintained in public school setting through grade 6, spent one year in a day program Hospitalized for 30 days at age 14 in a psychiatric hospital, Developmental Disabilities unit Hospitalized for 9 months at age 15 waiting for a residential placement (same hospital) Placed in a hospital-based, Boston area specialized program for 5 years Program is institutional, severely restrictive, for extremely behaviorally challenged individuals 5. Facing the realities If Nicky continues on the current trajectory, he will fail at 22. That trajectory: No progress with communication No progress with behavior/self management No progress in independent living skills No vocational or community inclusion training No transition planning by current placement Likely to be looking at another emergency placement/crisis at 22. 6. Taking the first steps - parents Tried to affect change in position at the current placement Requested more community practice, more vocational/living skills training, offered creative and collaborative scenarios Approached the school system Met with Phil Campbell, our new Director of Pupil Services Why not start 22 at 20? September 2011 Nicky is 18yr, 10 mo 7. Taking the first steps - Auburn Went to observe Nicky in the placement Advised the Superintendent, set up expectations for APS Created open and regular communication with family Independent evaluation results showed concern Initiated contact with DESE Commitment to create a new set of supports, with an emphasis toward transition to adult life Oct 2011 - Nicky is 18yr, 10 mo 8. Assessing our options: DAY PROGRAM Researched local agencies asked families, called for tours Committed to HMEA (www.hmea.org) RESIDENTIAL PROGRAM Traditional group home SHARED LIVING??!! - fortuitous meeting with Nonotuck President OK, SO NOW WHAT? (AND WHO, AND WHERE, AND HOW, AND WHEN) 9. How could this possibly work for Nicky? Could only work if we make this a hybrid Shared Living situation WHY Destructive behavior requires too many physical accomodations of living space to maintain safety Would not work in anything other than a single-family home Children may not be safe Nickys preferences are to be provided with attention anytime he needs it, and behavior management key is keeping engaged/busy. Needs 2:1 support much of the time, always during severe behaviors for redirection &/or restraint February 2012: 9 mos before move Nicky is 19 10. How could this possibly work for Nicky? Could only work if we make this a hybrid Shared Living situation HOW Will need full-time additional trained staff during all home awake hours Provider will need to move into Nickys house Provider will need his/her own respite funds Provider will need clinical supports Transportation vehicles must have 3rd bench Parents purchased home, put into place physical accomodations WHO? returned to Nonotuck, proposed this scenario, they accepted February 2012: 9 mos before move Nicky is 19 11. Exploring Day Agencies What was important to us COMMUNITY PARTICIPATION Peers with similar interests and ages Strong, proven clinical team Dignity in treatment Family welcome as team members March 2012: 9 mos before move Nicky is 19 12. Exploring Day Agencies The provider relationship can be a VERY long term relationship (decades; a lifetime) so spend lots of time vetting different organization well before Turning 22 spend lots of time getting to know the organization(s) ask to speak with families already receiving services does the agency have a family group? can you attend a family group meeting prior to placement? consider attending an agency event to get a feel for the culture of the organization Can you meet with the Exec or any administrator? Family chose HMEA, Inc March 2012: 8 mos before move Nicky is 19 13. Gathering the Team Phil Campbell, Auburn Director of Special Education Alex & Cheryl Chan, Nickys parents HMEA, Inc: Clinical Team, DayHab Supervisor, Employment Supervisor, Nonotuck, Inc: Clinical Team, Transition specialist, Case Manager DDS: Transition Coordinator (Turning 22), Childrens Services Case Manager MONTHLY MEETING SCHEDULE ESTABLISHED Parents and Auburn emphasized their expectations of inter-agency communication April 2012: 7 mos before move Nicky is 19 14. Original TIMELINE proposal: T minus 5 mos. to transition (boots to the ground) Get To Know Me / Support Assessment and Planning Identify and Interview Potential SLP / Meet and Greet Residential Accommodations and Adjustments Move In Get To Know Me / Support Assessment and Planning Identify and Evaluate Potential Day Programs Day Program Accommodations and Adjustments Rock and Roll Residential Day Program June July-Aug Aug-Sept Sept-Oct May 2012: 6 mos. before move Nicky is 19 15. Restraint Training Complete Get To Know Me / Support Assessment and Planning Identify and Interview Potential SLP / Meet and Greet Residential Accommodations and Adjustments Move In Get To Know Me / Support Assessment and Planning Identify and Evaluate Potential Day Programs Day Program Accommodations and Adjustments Rock and Roll Residential Day Program June July-Aug Aug-Sept Sept-Oct House Identified House Acquired Nicky Move- In SLP Move- In Labor of Love Weekend House Accommodation s Complete Start Day Program Evaluate Nicky Final Readiness Meeting Support Staff Interviews Day Program Defined Unified Behavioral Plan Parents-SLP initial meeting Evaluate Nicky SLP-Nicky meeting Monthly Team Sync Up Actual TIMELINE Brown: Res Provider (Nonotuck Resource Associates, Inc) Blue: Day Provider (HMEA, Inc) Purple: entire team 16. ONWARD AND UPWARD continued progress & hope for a great future Since Move-in 17. The re-eval June 2013: 8 mos after the move Nicky is 21 In all of these years, this evaluator has very seldom ever seen the degree of turn around that has been currently noted in Nickys caseNickys improvement across many dimensions has been DRAMATIC. 18. 1 YEAR AFTER MOVE-IN October 2013, 1 year after move-in: Nicky has 2 straight weeks with zero behaviors at home first time since age 5. UMASS team making home & program visits Working together with clinicians to devise desensitization program, build picture vocabulary for clinical Cross-agency clinical teams still connect bi-weekly or more as needed New Director in Auburn continues level of support & final paperwork as we near turning 22 1 year later 19. 1 YEAR AFTER MOVE-IN Attended an overnight camp for 2 nights, with plans A, B & C created by family & SLP 35 peers from the day program showed up for his 21st birthday party in November First lady friend Home on weekends with no pressure on family to give him respite from his placement NO ONE IS WORRIED ABOUT TURNING 22! 1 year later 20. 71% decrease in aggressive behaviors 90% reduction in self abusive behaviors Verbal language increasing Use of picture exchange replacing aggression to communicate Res Setting, Year 1 21. 55% reduction in aggressive behaviors 70% reduction in self abusive behavior Spends 75% of each week in the community Day Setting, Year 1 22. Hes too dangerous to be in the community 23. NOVEMBER 2014: THE BIG 22! RIGHT NOW Another great birthday party! Beginning to think about the future (again!) and where to go from here New DDS players adult service coordinator. Thrilled that she has very little to do for the already-established team. Not without roadblocks & bumps Learning curve has been ours (adult systems, regs, procedures, etc) but Nicky was unaffected while we experienced the shock & awe. 24. RIGHT NOW 25. They need us, and they love us unconditionally. and show them that the value of their life transcends any limitation set before us. 26. Where are you? Child is 3-8: begin saving money for housing/college Child is 9-13: inventory living skills, include in IEP (see slide 9) Child is 14: develop vision, educate the team, begin formal transition planning using TPF, DDS adult eligibility at 17 IEP goals are developed around appropriate skill building for maximum anticipated independence Child is 18: establish guardianship, apply for SSI, get on Section 8 housing lists, explore colleges, home locations, etc Child is 18 and anticipated to stay in LEA until 22: check the trajectory, adjust, begin back chaining for 22 27. What the LAW says about transition: NOW 28. If your school system is not creating transition- related goals and developing the post- secondary vision with you starting at age 14 Its time for a REVOLUTION 29. DONT SIGN THE IEP! FROM NOW, ON! 30. As long as we ACCEPT COMPLACENCY, We are going to GET COMPLACENCY. NEVER AGAIN 31. Continue to share Slides: www.slideshare.net/cherylryanchan Website: www.successfultransitions.org Connect with Cheryl Chan: http://about.me/cherylryanchan Email for educators/admins: Philip Campbell ppine@outlook.com On Facebook: search for the group Transitioning our Children with Autism into Adults! PRESENTATION IS AVAILABLE TO ANY GROUP OR ORGANIZATION, FREE OF CHARGE (contact Cheryl above) Timeline