1. 22 at 20: A non-traditional Transition story

2. WELCOME What you will learn: The story of Nicky Creating a vision, creating a plan, creating a team, outcomes How collaboration made this a success Where Nicky is now 3. WELCOME This is only ONE STORY Our purpose is to encourage Creative thinking Early planning Research & use of Resources Open communication & collaboration 4. 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 5. 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 6. 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. 7. Facing the realities What WILL give Nicky the best chance for success? Change in placement PROBLEMS WITH THE ABOVE Unlikely another school would accept him at this point (age) Would take at least one year to settle Clock is ticking 8. 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 Requested a meeting with the new SPED Director, began conversation with hes not progressing, hes regressing and he is in danger (NOT were not happy) September 2011 Nicky is 18yr, 10 mo 9. Taking the first steps - Auburn APS observations by the Director of Special Education Went to observe Nicky in the placement (and what he observed) Recommended and executed a program assessment done by an independent professional Independent eval results showed concern Advised the Superintendent Initial contact with DESE Oct 2011 - Nicky is 18yr, 10 mo 10. Formulating the Plan Family and director began meeting regularly Director defined his role to facilitate the discussion (not manage) set agendas, maintain IEP paperwork, communicate with DESE Review the independent evaluation & recommendations Create a timeline (back-chaining) Invite chosen agencies to visit current placement & observe Agreed on role of current placement & when to approach them with plan Dec 2012: 11 mos before transition Nicky is 19 11. 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 January 2012: 10 mos before transition Nicky is 19 12. Exploring Housing Models Connected with Autism Housing Pathways www.autismhousingpathways.net Considered creating a family-driven home Purchasing a home & setting Nicky up privately Waiting for DDS to find an available bed Had not considered Shared Living until fateful meeting February 2012: 9 mos before transition Nicky is 19 13. What is Shared Living? MYTHS: Shared Living was created solely for the high functioning population Just for those who are pre-defined as successful. Only for families who cant take care of their loved one themselves (if I cant take care of my own child, how can another family do it?) 14. What is Shared Living? DEFINITION (traditional): An adult or family is recruited or trained, then Incorporates the individual into their existing home and structure 15. 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 transition Nicky is 19 16. 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 transition Nicky is 19 17. 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 transition Nicky is 19 18. 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 transition Nicky is 19 19. 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 (for now) UMASS Medical Home Program Team MONTHLY MEETING SCHEDULE ESTABLISHED Parents and Auburn emphasized their expectations of inter-agency communication April 2012: 7 mos before transition Nicky is 19 20. Thinking about a new IEP Identifying vision as a team Set plan to send clinical teams to placement for observations in July. Asked others who know him well (past and present) what they thought about what he might like to do, what his strengths are, etc. Asked clinicians what they thought from a behavioral standpoint, based on their observations. Stayed open to responses, added them to the list. What skills will he need to best prepare him for the level of supports we can anticipate in adulthood? Found some tools: April 2012: 7 mos before transition Nicky is 19 21. Thinking about a new IEP Skills assessment tools MA DESE Transition Assessments Example Sheet http://www.doe.mass.edu/ sped/advisories/transition- assessments-example-sheet.pdf 22. 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, DDS adult eligibility at 17 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 23. Phil maintains close communication with DESE Current IEP is expired, family agrees to extension & stay put until just before actual transition See actual timeline: June 2012- Oct 2012 Move in: Oct. 2012 A Whirlwind of Activity 24. 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 25. The Collaborative Process Proactive vs. Reactive: a shift in thinking Proactive DOES NOT MEAN going in with dictates or requirements, but it DOES MEAN we need to be as thorough as possible about what history has taught us Reactive is a better rule for us Allow the agencies to do what they do best; trust them and your decision. React only when something happens or youd like to provide input Practice your reaction first, allow them to discuss Choose the person who can best help you manage your reactions, make that person your sounding board 26. The Collaborative Process: Relationships with caregivers Shared Living Provider Most important relationship key to success His health & well-being equal in importance to us as Nickys: fear of burnout/being overwhelmed Balancing communication as parents (indirect, see below) & landlord (direct line) All programming & operational concerns are filtered through the Nonotuck case manager seems awkward, but has become less so over the past year Agency representatives Many team members: important to know whos who but also have a single contact for most communication Establish/hash out expectations for communication EARLY not the same practices as school-age, be prepared Maintain agreed upon expectations & dont ignore or dismiss them because we are the parents 27. On a personal note: blood, sweat, tears and planning 15 years of volunteering, event participation, shaking hands, having conversations 18 years of savings: (calculations at autismhousingpathways.net) Defining roles together & supporting them (Alex & Cheryl) We spent a lot of time meeting people, being involved in the community, listening to the experiences of others paid off in connections Asked others who know Nicky well, what they thought Back-chain planning 28. On a personal note: blood, sweat, tears and planning Focus only forward did not burden team with old stories, emotions to dominate meetings Turned our mindset from educational goals to practical skill building Gathered the team and allowed them to do what they do Removed the assumption that we ALWAYS know best Maintaining respect for the relationship between SLP & Nicky Asked Nonotuck not to put us at the top of the emergency list 29. The re-eval June 2013 8 mos after transition 30. ONWARD AND UPWARD continued progress & hope for a great future NOW 31. SO HOWS THE TEAM DOING NOW? 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 clinica 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 NO ONE IS WORRIED ABOUT TURNING 22 NOW 32. SO HOWS NICKY DOING NOW? Attended an overnight camp for 2 nights last summer, 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 NOW 33. 71% decrease in aggressive behaviors 90% reduction in self abusive behaviors Verbal language increasing Use of picture exchange replacing aggression to communicate Visiting community daily Residential Setting: 34. 55% reduction in aggressive behaviors 70% reduction in self abusive behavior Spends 75% of each week in the community Educational Setting: 35. Hes too dangerous to be in the community 36. They need us, and they love us unconditionally. and show them that the value of their life transcends any limitation set before us. 37. Continue to share Slides: www.slideshare.net/cherylryanchan Website: www.successfultransitions.org Email for families: Cheryl Chan cherylryanchan@gmail.com 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 38. Why we did this: Madame Marie Curie You cannot hope to build a better world without improving the individuals. To that end, each of us must work for his own improvement, and at the same time share a general responsibility for all humanity, our particular duty being to aid those to whom we think we can be most useful.