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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
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
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)
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
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
Family chose Nonotuck Resource Associates, Inc.
February 2012:
9 mos before
transition
Nicky is 19
Provider’s Perspective
Collaboration & Support
Working with a full team
Agency values
Developing personalized service plan
Connecting through relationships
John Struth
Nonotuck Resource Associates
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
Provider’s Perspective
Day Services & Behavioral Supports
Collaborative Thinking
Michael Moloney
HMEA, Inc.
Exploring Day Agencies
The provider relationship can be
a VERY long term relationship (decades; a lifetime) sospend 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
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
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
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
IdentifiedHouse
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
ONWARD AND
UPWARD
continued progress &
hope for a great future
NOW
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.”
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 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
NO ONE IS WORRIED ABOUT TURNING 22
NOW
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
• 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:
• 55% reduction in
aggressive behaviors
• 70% reduction in
self abusive behavior
• Spends 75% of each
week in the
community
Educational
Setting:
“He’s too dangerous
to be in the community”
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
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
What the LAW says about
transition:
NOW
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
