This document summarizes the non-traditional transition of a young man named Nicky from an institutional residential program at age 22 to a community-based shared living arrangement. Over the course of 7 years, with extensive planning, collaboration between agencies and clinicians, and an adaptive approach, Nicky was successfully transitioned out of the institutional setting where experts said he was too dangerous for the community. The summary highlights the planning process, exploration of different housing and day program models, challenges along the way and lessons learned from this transition success story.

1. 22 at 20:
A non-
traditional
Transition
story
7 YEARS LATER…

2. MY WELCOME MESSAGE REMAINS
THE SAME SINCE 2012:
The purpose of this presentation is to
encourage
Creative thinking
Early planning
Research & use of resources
Open communication & collaboration

3. A Glimpse of Nicky
 Behavioral aggressions began at age 5
 Maintained in public school setting through grade 6, spent one year in a day
outplacement
 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
WHERE THE EXPERTS SAID…

4. “He’s too
dangerous
to be in the
community”

5. A Glimpse of Nicky
Facing the Realities
1st steps – Parents
1st step – School
Formulating the Plan
Original Timeline
Exploring Housing Models
What is Shared Living?
How Could this possibly work for Nicky?
22at20 in 2012: the workshop that rocked the
system
Exploring Day Agencies
Gathering the Team
Thinking about the new IEP
A Whirlwind of Activity
Actual Timeline
The Collaborative Process
On Blood, Sweat, and Tears
How’s the team doing now?
How’s Nicky doing now?

6. 22at20 in 2012: the data that rocked the system

7. 22at20 in 2012: the data that rocked the system

8. 2012-
2019

9. Why revisit this story?
IT’S STILL RELEVANT!
 Families are still struggling to find housing
 DDS still faces difficult federal (CMS) guidelines & limitations
 Priority 1, behaviorally challenged ID/D citizens are assumed to
be only capable of group home level support
 We are still system-centered, not person-centered
 Parents still struggle with fears about Shared Living
 We are not sharing the good news enough
2019

10. Successes over the last 7
years 2019

11. Successes over the last 7
years: 2019
2 SHARED LIVING PROVIDERS, 9 TOTAL STAFF,
4 OF WHOM HAVE STAYED 4-6 YEARS.
Medications: Nicky arrived on 2 anti-psychotic medications, 1 anti-anxiety medication, 2
PRN drugs for behavior management, and a Level 3 Behavior Modification Plan. He is
now on 1 anti-psychotic at less than half the original dose, 1 anti-anxiety, no PRN drugs
and a Level 2 Behavior Modification Plan with an emergency hold allowed to stop self-
harm.
Nicky has added over 100 words to his verbal vocabulary.
Nicky has had numerous visitors to his home, including family and friends, and friends of
his caregiver. He friended the son of a regular visitor, who was 9 years old; they played
together regularly without supervision over the course of 2 years.
Nicky and his entire family attended Blue Man Group sponsored by Autism Speaks, in
2014, without incident.
Nicky and his Mom, together with 3 support staff, attended the theater performance of
Aladdin in Boston in 2018, without incident.
Nicky hosted a BBQ at his house in 2016, with 4 friends from his day program.
Nicky hosted a birthday party for himself with over 30 coworkers for 3 years in a row at a
local indoor inflatable park.
Nicky has his own phone and uses it to call his parents.
Nicky bakes muffins every week for himself and his SL Provider.

12. Successes over the last 7 years:
the GROUND RULES we
established
2019
From Day 1 of Nicky’s move into his new home,
until now
Alex and I were not to be the first ones called when there were behavior
issues in the home. We wanted to be informed after they were resolved,
or immediately if there were injuries and/or emergency care needed.
The residential provider agency agreed to meet with the clinicians at the
day program monthly at first, then less frequently when determined safe,
to collaborate and share information on behavioral strategies and
outcomes. This was put into the ISP.
We would take care of the property maintenance, the SL Provider would
share in the upkeep.
We would call or text just before coming over, but no promise of an
amount of time before arriving.
Any issues or concerns about the SL Provider would be brought to the
attention of the Case Manager, not directly with the Provider, and vice
versa.
We were invited to be part of the hiring process for any SL, respite or
part-time caregivers.

13. Challenges over the last 7
years
2019
What happened Our new approach
During a planned 4-week respite
while caregiver was overseas in
2013, there was suspected
neglect by the unfamiliar respite
provider.
The team agreed not to allow the respite
staff to return, and we all committed to
frequent drop-ins and checks during
future respite periods.
There were frequent attempts in
2012-2016 to find out who Nicky’s
friends were at the day program;
the agency refused to provide any
names or make any connections.
We wrote a letter inviting other families to
Nicky’s house for a party; the agency
agreed to send it themselves to families,
and if they wanted to RSVP they could
directly.
We’ve tried to bring Nicky to our
family home for visits with
regularity, but they were rarely
successful and more often ended
with anxiety and distress on
everyone’s part.
After multiple behavioral strategies were
applied, none have worked. Nicky now
visits only on holidays and to swim
outside in the summer – we go to his
house every Saturday and Sunday, and
drop in during the week.
In 2013 after several major head
traumas due to SIB, the team
decided Nicky needed to begin
using a helmet for his own safety.
Only since the early part of 2019, the
team has felt comfortable enough to
discuss a plan to reduce the helmet use in
the day setting and in the community at
any time. The clinical team at the day
program has proposed and is now
implementing the strategies. We all
agree: safety first!

14. Challenges over the last 7
years 2019
What happened Our new approach
In 2014 it was discovered that
Nicky had been severely
abused by staff at his day
program while isolated in
community settings.
The accused staff were fired from the
program, the program made changes to
Nicky’s schedule to keep him on site at the
progrm. He began to thrive beyond
everyone’s expectations when he began
spending time with peers.
In 2016, the relationship with
the day provider agency
deteriorated and Nicky was
invited not to return.
We fought for a program that was out of the
DDS region but offered the most opportunities
for diverse experiences, could handle
behavioral challenges. He has been there
since with great success.
We anticipated caregiver
burnout, and the res program
provider agreed.
A potential backup provider list was
established the first month after Nicky movied
in. It has been maintained by us and by the
res agency.
After about 6 years, the original
SL provider was showing signs
of burnout.
We (Alex and I) made the difficult decision of
terminating him. Within 3 days, his longtime
p/t in-home support provider moved in.

15. Lessons
learned 2019
IMHO
Always have separate agencies providing residential and day supports. When one
fails, the other can provide stability.
If we had NOT started to collaborate with the players one year before the
anticipated transition date, Nicky would have been hospitalized rather than
prepared and provided the support he needed to transition.
Absolutely every person involved in the original transition team was someone I had
introduced myself to over the previous 10 years, met at a conference or an event,
reached out to by phone or email, for the purpose of developing a network I could
call upon when needed. It was key.
Nicky and his caregivers needed to create their own relationships their own way.
By stepping back and not over-managing, Nicky gained skills we would never have
guessed he could, and did things we would have said “he can’t.”

16. Biggest
Takeaways
A LITTLE HARD TO HEAR, MUCH HARDER TO SAY,
SO IMPORTANT TO SHARE
I am a better Mom now than I ever could be with Nicky in my home under my care. I have
the physical and mental strength to advocate and the opportunity to enjoy every second with
Nicky, any time I want. I have a strong marriage, a strong daughter, and the time to enjoy my
life.
Nicky has a better life with his caregivers and activities now than he could ever have if he
were still at home. We would be too afraid, tired and anxious to take him out to the places
where he now goes all the time.
Nicky’s caregivers are now in charge of his care. It’s my job to support them to feel
valued, empowered, and included in conversations about Nicky. It’s my job to listen and
respect their voices as I articulate any vision of progress or change I know will benefit Nicky.
I was right about Nicky’s ability to be better and do more. I was wrong about the capacity
of others to love my son (almost as much) as I do.
Creating a life for Nicky away from us now, while we are still here and strong enough to be a
part of the development of a full life and watch his progress with joy, is better than holding
on until we can’t, leaving him unprepared and without sustainable relationships.
When I am gone, I know my son will be ok.

17. Continue to share
 Slides:
www.slideshare.net/cherylryanchan
 Website:
www.successfultransitions.org
 Email for information: Cheryl Ryan
Chan cherylryanchan@gmail.com
Fellow
Parents –
read this and
be
encouraged
DDS folks –
share this
with parents
who are
terrified to let
go
Agencies –
share this
with parents
who need to
see the
positive

18. 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.

19. 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

20. 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 “he’s not progressing, he’s
regressing and he is in danger”
 (NOT “we’re not happy”)
September 2011
Nicky is 18yr,
10 mo

21. Taking the first steps – school
 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

22. 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

23. 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

24. 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

25. 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 can’t take care of
their loved one themselves (“if I can’t take
care of my own child, how can another
family do it?”)

26. What is Shared Living?
DEFINITION (traditional):
 An adult or family is recruited or trained,
then
 Incorporates the individual into their
existing home and structure

27. 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
transition
Nicky is 19

28. 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

29. 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

30. 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

31. 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

32. 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

33. 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

34. 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

35.  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

36. 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

37. 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 you’d 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

38. 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 Nicky’s: 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 who’s 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 & don’t ignore or dismiss them
because we are the parents

39. 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

40. 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

41. The
re-eval
June 2013
8 mos after
transition

42. ONWARD AND
UPWARD
continued progress &
hope for a great future
NOW

43. 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