22 at 20: a nontraditional transition story
TRANSCRIPT
22 at 20: A non-traditional Transition story
WELCOME
This is only ONE STORY ¡ Our purpose is to encourage
¡ Creative thinking ¡ Early planning
¡ Research & use of Resources
¡ Open communication & collaboration
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
A Glimpse at Nicky
¡ 23 years old
¡ 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
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.
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
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
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)
Oct 2011 -
Nicky is 18yr, 10 mo
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 accommodations 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 ¡ More importantly, and like many with autism:
¡ Nicky prefers quiet, restful spaces ¡ Nicky wants to have meaningful, close relationships with other ¡ Nicky enjoys determining his own activities
February 2012: 9 mos before move Nicky is 19
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 accommodations
¡ WHO? – returned to Nonotuck, proposed this scenario, they accepted
¡ Family chose Nonotuck Resource Associates, Inc.
February 2012: 9 mos before move Nicky is 19
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
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
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
¡ MONTHLY MEETING SCHEDULE ESTABLISHED ¡ Parents and Auburn emphasized their expectations of inter-agency
communication
April 2012: 7 mos before move Nicky is 19
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
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 Accommodations
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
ONWARD AND UPWARD continued progress & hope for a great future
Since Move-in
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.”
1 YEAR AFTER MOVE-IN
¡ October 2013, 1 year after move-in: Nicky had 2 straight weeks with zero behaviors at home – first time since age 5.
¡ UMASS team making home & program visits ¡ Worked 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
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, same number for 22 and 23
¡ 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
• 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
Res Setting, Year 1
• 55% reduction in aggressive behaviors
• 70% reduction in self abusive behavior
• Spends 75% of each week in the community
Day Setting, Year 1
“He’s too dangerous to be in the community”
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.
RIGHT NOW
They need us, and they love us unconditionally.
and show them that the value of their life transcends any limitation set before us.
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
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
¡ DON’T
¡ SIGN
¡ THE
¡ IEP!
FROM NOW, ON!
As long as we
ACCEPT COMPLACENCY,
We are going to
GET COMPLACENCY.
NEVER AGAIN
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 [email protected]
¡ 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
More Learning options
¡ February 23, 2016, 6:30-8:00pm: FREE WEBINAR ¡ “Autism and Life Transitions: Hard Lessons Learned and
Taught as a Person-Centered Planning Facilitator”
¡ Please sign up tonight or email [email protected]
¡ Person-Centered Planning: An Overview ¡ Available as requested; email [email protected]