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22 at 20: (as presented at the MFOFC Building a Home conference, 9/27/2014)

The 22 at 20 workshop developed specifically for this conference, co-presented by team members.

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22 at 20: (as presented at the MFOFC Building a Home conference, 9/27/2014)

  1. 1. 22 at 20: A non-traditional Transition story
  2. 2. WELCOME This is only ONE STORY Our purpose is to encourage Creative thinking Early planning Research & use of Resources Open communication & collaboration
  3. 3. WELCOME  stop listening!  say “I couldn’t do that, there are too many obstacles”  Say “this has nothing to do with me or my kid”DON’T DO  Keep an open mind  Pick what makes sense  Commit to at least one takeaway
  4. 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. 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. 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. 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. 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. 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  Nicky’s 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. 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 Nicky’s 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
  11. 11. Provider’s Perspective Collaboration & Support Working with a full team Agency values Developing personalized service plan Connecting through relationships John Struth Nonotuck Resource Associates
  12. 12. 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
  13. 13. Provider’s Perspective Day Services & Behavioral Supports Collaborative Thinking Michael Moloney HMEA, Inc.
  14. 14. 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
  15. 15. Gathering the Team  Phil Campbell, Auburn Director of Special Education  Alex & Cheryl Chan, Nicky’s parents  HMEA, Inc: Clinical Team, DayHab Supervisor, Employment Supervisor,  Nonotuck, Inc: Clinical Team, Transition specialist, Case Manager  DDS: Transition Coordinator (Turning 22), Children’s 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
  16. 16. 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 transition Nicky is 19
  17. 17. 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
  18. 18. ONWARD AND UPWARD continued progress & hope for a great future NOW
  19. 19. 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 Nicky’s case…Nicky’s improvement across many dimensions has been DRAMATIC.”
  20. 20. SO HOW’S 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
  21. 21. SO HOW’S 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
  22. 22. • 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:
  23. 23. • 55% reduction in aggressive behaviors • 70% reduction in self abusive behavior • Spends 75% of each week in the community Educational Setting:
  24. 24. “He’s too dangerous to be in the community”
  25. 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. 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  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. 27. What the LAW says about transition: NOW
  28. 28. If your school system is not creating transition- related goals and developing the post- secondary vision with you starting at age 14… It’s time for a REVOLUTION
  29. 29. DON’T SIGN THE IEP! FROM NOW, ON!
  30. 30. As long as we ACCEPT COMPLACENCY, We are going to GET COMPLACENCY. NEVER AGAIN
  31. 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

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