Making It Happen
A publication of the
Self-Advocacy Association
of New York State, Inc.
Stories of Self-Determination
using Consolidated Supports & Services in New York State

c The Self-Advocacy Association of New York State, Inc. 2006

Table of Contents
5 Introduction
Stories:
6 At last: my own policies! ~Veronica Johnson
8 My journey to independence ~Carrie Bergeron
10 The freedom to be spontaneous ~Ed Bartz
12 You set your goals and off you go! ~Alisha Thompkin
14 Directions ~Deborah Jean Anderson
16 You do it! ~Patrick Wilcox
17 A different set of rules ~Peter Franczyk
18 I free - I fly! ~Merle Keller
20 Open to all possibilities ~Dennis Pullen
22 Managing my office - managing my life ~Mandy Shenkman
23 Citizens of our society ~Nicole Hastings
24 My schedule works around me ~Steve Fleisher
26 Make a change ~Kim Henchen
28 Freedom to be my myself ~Scott Wing
30 Turning points and challenges ~Cathy Van Laar
32 One exciting mountaintop high! ~Jenn Seybert
34 Give people a chance ~Joey Perez
35 Move on to a better life ~Larry Sutliff
36 A picture of who I am ~Clint Perrin
37 Some words of gratitude
38 Contacts

5
Introduction
In every movement, in every new step we take as a society,
we need heroes to lead the way. The following stories are real
examples of some of the pioneers of Self-Determination in New
York State. They have bravely moved outside of traditional
services and developed supports based on their needs and dreams.
These individuals are forging ahead, helping to evolve our system
to one that provides more individualized, person-controlled
services for people with developmental disabilities.
The SANYS Board is proud to present these inspiring stories.
The key elements of self-determination as defined by the Self-
Advocacy Association of NYS, Inc., (SANYS) are: Freedom, Control,
Authority, Support, a Portable Budget and the contribution of Self-
Advocacy.
The Office of Mental Retardation and Developmental Disabilities
(OMRDD), in partnership with SANYS, developed Consolidated
Supports and Services (CSS) as a funding mechanism: a new way
to pay for supports and services, (an alternative to the traditional
agency model). CSS gives people control over whom they hire and
which supports are provided to them. While CSS is not the only
way people can be self-determined in New York State, it is one way
that people can truly create the life they want.
At present there are 200 opportunities for people to access this
service option in New York State. To take advantage of this
opportunity you must be receiving, or be eligible to receive, services
from OMRDD.
Each person using CSS develops a circle of support, completes
a practical person-centered plan, designs a weekly schedule of
supports, and creates an individual budget, which includes their
personal resources as well as the cost of services being accessed.
If you are interested in finding out if self-determination can work
for you, see the contact list on page 38.
For additional copies of this booklet, please call the SA office at
518-382-1454 or visit our website at sanys.org and download a PDF
of the booklet.~
6
Before finding out about Self-Determination using Consolidated Supports and
Services (CSS), I had been trying to accomplish my dreams through the system
that was already in place. However, the policies of so many agencies and
organizations acted like roadblocks and setbacks in my path. I was sick and tired
of hearing about what I couldn’t do, or couldn’t get, because of someone else’s policies.
Again and again, someone else was in control telling me what I should and shouldn’t
have, and what I did and didn’t need. I thought my goals of living on my own, getting
my college degree and living a meaningful life would never happen.
My dream of acquiring degrees in psychology and law hit
two ‘policy brick walls’. First, my home attendant agency
wouldn’t allow my attendant to accompany me to school
to assist with note-taking and personal things that came
up during the day. I thought I had solved the problem by
having my grandmother accompany me to class, but then
the college informed me that family members couldn’t
come to class unless they worked for me officially as an
aide. So, because of the policies of both the agency and
the school, I was forced to put off my education and any chance of seeking
competitive employment. I had also been seeking to move into my own
apartment, but dealing with the policies of the home attendant agency &
the local Human Resource Administration office, CASA X, made it impossible to do so. I was told that I should
move into a group home, and that was not the life I had envisioned for myself.
Since beginning to plan my future through Self-Determination using CSS, many things
have changed. The program has given me the chance to finally realize the dreams and
goals I have always envisioned for myself.
To begin with, my Circle of Support has helped me to find my own apartment. Since
the agency would still only give me 12-hour home attendant service, in the beginning
my grandmother stayed overnight with me a couple of nights a week and I spent the
other nights at my mother’s house. Eventually, the agency gave me 24-hour service,
but they had a hard time finding people to work such long shifts three days at a time.
At last : my own policies!
7
Also, the home attendants were not allowed to accompany me to school, therapy, doctors
appointments or out in the community. This was a real problem because I can’t push a
manual wheelchair by myself. If my motorized wheelchair breaks down, I’m stuck in the
house until my mother or grandmother comes home.
Developing my plan took some time, because we had to figure out how I would be able
to receive 24-hour service. My CSS budget wouldn’t cover that amount of support plus
the other services I required. Fortunately, my Medicaid Service Coordinator at the time,
Simone Jelks, hit on the idea of transferring my home attendant service to overnight, and
then hiring staff through CSS to work during the day. My approved plan now has 14-
hours overnight home attendant service (from an agency that allowed me to choose my
own staff through them), and 10-hour CSS staff seven days a week.
Definitely one of the best part
of CSS has been hiring my own
staff – which I did by using
funds set aside in my CSS
budget for advertising. My mother and I placed ads in newspapers and on the Internet
and received numerous responses. I made sure that my ad included details about the
kind of personality the person needed to have in order to work with me: you can’t spend
ten hours a day with someone if you can’t get along with them! They also had to be
willing to travel with me.
Many of the people sounded great over the phone, but failed the interview. The biggest
reason for not making it was that when I asked a question, instead of talking to me, they
would look at my mother and respond. I felt that that was disrespectful. Others seemed
like they just wanted a job and a paycheck and were not concerned with me as a person.
In the end though I found great individuals to work with me, both during the day through
CSS, and at night through the home attendant agency. Another issue surfaced at my
college: I needed tutoring, but because of a college policy I couldn’t get the help I needed
through the school. So, I decided to go through CSS and hire my own tutor. In my plan,
I now have a tutor who I hired & who works within my schedule.
As a person with a disability, it always seems that policies and money come first and
somewhere near the bottom of the list are the disabled themselves. With CSS, I come first
and the money is there to back me up. I’m using it to establish my own policy of getting
what I need to succeed in life.
In the past I felt like a prisoner in my own home: a third-class citizen who is just a dollarsign
in the ‘traditional’ system that’s in place. Now, through CSS, I have finally gained
my independence and I’m pursuing my goals. At last I feel like I’m an equal member of
society who is respected and treated as a human being.~
Through CSS... I feel like I’m an equal member
of society who is respected and treated
as a human being
8
My journey to independence
Carrie Bergeron
B efore I got involved in the Self-determination Pilot
Program (SD) I was in a Home Waiver program
through the Resource Center for Independent
Living (RCIL) in Utica, NY. My home waiver
staff member worked with me two times a week, doing
independent living skills. She assisted me with study
and comprehension skills when I was a student at
Herkimer County Community College. We also worked
on household skills such as grocery shopping, money
management, and cooking skills. I was able to be around
people in different communities and gained confidence
in my social skills.
Then, I got engaged to a talented
musician! My needs changed at that
point. I would be moving to a city
55 miles away after our wedding. I
decided to become involved in the SD
plan to help me through this transition
of moving from home soon. Basically,
I wanted to be responsible and
independent and, along with my Circle
of Support, to control my own life. SD
assisted me by having the resource
money given to me, the consumer,
instead of an agency. I am now, along
with my Circle, in charge of hiring and
firing my own support staff!
Since September I have been working
with a support person, who is assisting
me in becoming involved in Rome,
NY where I will be living. I have been
taking voice lessons, working out at the
YMCA and volunteering at the Upstate
Cerebral Palsy working with toddlers
who have special needs. We also work on cooking skills, collecting recipes, safety skills,
travel training, navigation/map skills, paperwork for my SD/CSS plan. She also takes
me to a fitness center to exercise in Herkimer, NY. All this is helping me to prepare for my
future!
9
SD also includes an element called the Circle of Support. The Circle is a group of people
such as family members, friends, and co-workers, who know me well and help with my
planning. The Circle is assisting me to become more responsible and independent and
pointing out where I will need support when living on my own with my husband.
The Circle meets monthly to discuss my strengths and weaknesses; to think of ways
of getting me involved in the Rome community, and helping me with my routines and
schedules, my goals and dreams, safety inside and outside of our apartment, and working
on strategies and discussing funding options for certain services. In February 2006 my
fiancé and I are going to begin to have joint meetings to discuss those services we will
need together as we set up our supports and living arrangements in Rome after we are
married. We plan to do this through the SD/CSS program also. I am very thankful there
is this pilot program which gives flexibility and lets me determine what my wishes and
needs are. I was the first infant in Early Intervention in my county in 1976 and am thankful
to be a part of this pilot program now!~
CSS helps because the money is given directly to me, the
consumer, instead of to an agency
10
These are just some of the reactions I faced when I decided to become independent
of a traditional residential program.
To help someone who is unfamiliar with that kind of program understand, I’ll
give some background information. Over the years I have lived in many kinds
of situations – many of which would be worth forgetting. However, fortunately, people
with disabilities have gained so much dignity and respect that being “put away” in an
institution is not even thought of anymore. In any case, most recently I lived in my own
apartment and shared support staff with seven other people who needed help.
While that kind of apartment living is a step up from being in a group residence, it still
has some drawbacks. The Office of Mental Retardation and Developmental Disabilities
(OMRDD) regulates this type of housing. And while the Center for the Disabled does
its best to cater to the wants and needs of each individual, with a limited ratio of staff
to consumers, this task can be difficult. Depending on the event or activity, I sometimes
need help when going out into the community. This requires a lot of planning and the
consideration of staff and residents.
To give a comparison, let’s say you plan to attend a concert. You make plans to have
somebody help your ailing mother while you’re at the concert, but on the day, the person
The freedom to be spontaneous
Ed Bartz
You can’t do that Ed?
How will you manage
on your own?
What will happen
if you need help?
Do you really think
this is a good idea?
What if a fire
breaks out?
11
you’re relying on can’t make it. You call other friends but they have commitments of their
own. As a result, you end up not being able to go to the concert. This is what it can be like
for a group of disabled folks that rely on assistance. Staff or volunteers get sick or have
things going on in their own lives and that impacts you.
Since June 2005, when I began using Consolidated Supports and Services, I have been
living a life of true independence. I have complete say in how money is spent to support
the services I need, and I have a budget that covers every aspect of my life. I still have
to deal with people calling in sick sometimes but my plans can be carried out without
interruption.
This means taking on more responsibility, but the freedom to be spontaneous is
irreplaceable. Though my patience was really tested while I waited for OMRDD to
approve my budget (the process was painstakingly long and tedious and took over two
years), it was a relatively short period of time compared to my 43-years of living with
a disability. With my Circle of Support behind me I hire people to assist me in living
a higher quality of life. My Circle consists of people who have known me for many
years. They help me problem-solve and make crucial decisions, and my success is just as
important to them as it is to me.
After much persistence and determination, I finally have control of my living environment
just like everybody else does and it feels good to have a say in every aspect of my
life. I need to be more organized – but I wouldn’t give up my new way of life for the
world. ~
It feels good to have a say in every
aspect of my life
12
Alisha is a beautiful young woman with a great smile. I could see early on, from the
way she reacted to certain situations, that she was full of humor and extremely
bright. Those who know her have often remarked that her laugh is infectious.
Alisha has a brother and two sisters, and is an aunt. We, her family, have always
been strong advocates for her. As a parent I have tried to teach all my children to never
give up and to never stop believing in themselves.
At high school Alisha had a one-on-one aid. My fears
grew as the time came to transition from school to a dayhabilitation
program. One-to-one support was not an
option with traditional services in our area. In fact, I
knew Alisha would need a continued level of personal
assistance and care after leaving school. Alisha had been
in an inclusion progam at her school where she interacted
with kids with and without disabilities. I didn’t want
Alisha to lose the community connections she had builtup
while she was in school.
Nevertheless, after high school, Alisha began attending a day-habilitation program. We
soon realized that there was a lack of communication between Alisha’s service provider
and us. The program was not offering the type of services she, nor we, were looking
for, and it was unsafe at times. I spent a lot of time teaching the program staff how
to best support my daughter only to be ignored – as if I had no idea of my daughter’s
capabilities! We became increasingly frustrated and decided to look for another way to
meet her needs.
Through Alisha’s Medicaid Service Coordinator, Janet Austin, at the Advocacy Center in
Rochester, NY, we found out about Self-Determination using Consolidated Supports and
Services (CSS). Janet explained to us that a Home and Community Based Services (HCBS)
waiver allows for the freedom and authority to handle your own supports and services.
Janet’s level of care and dedication helped us take the steps we needed in order to start
this process. Soon after, we began developing Alisha’s Circle of Support and a Person-
Centered Plan. Once her CSS plan was approved by the Office of Mental Retardation
and Developmental Disabilities (OMRDD), her Circle Quickly began connecting her to
services and supports that would work for her.
One of the highlights of using CSS is that the Circle members are able to budget how the
money is used and to juggle resources. For example, we decided how much to spend on
transportation and staff supports. We then submitted that for approval. Also, using CSS,
Alisha was able to budget two weeks of respite for me during the year. This gave her the
support she needed and it gave me the freedom to focus more time on my business. This
in turn helped us as a family. There is great peace of mind that comes with using CSS. It’s
wonderful to know that Alisha has the support necessary to be totally safe.
Alisha and her Circle are responsible for hiring, training and firing staff. With help from
her Circle, Alisha interviews and hires staff members (one of whom is her sibling!) who
You set your goals and off you go
Alisha Tompkin’s story,
told by her mother, Mary
13
all go through training with LDA, our
Fiscal Intermediary (FI). The FI’s role is to
pay the bills as described by the approved
plan and budget. So, LDA pays the staff
and provides all the necessary paperwork,
making them only the employer of record. The
managing employer is Alisha and her Circle.
LDA is the ‘middle-man’ between Alisha’s
budget and the federal government. Alisha
and her Circle maintain the authority over
her services. Also, we had been dealing
with an old, unreliable van. Using CSS,
Alisha leased a new van, which she uses
to go to and from activities. Aside from
reliable transportation she is building
credit because the lease and insurance are
in her name.
CSS is a new program and there were some kinks to work out. We worked closely
with Elaine Peckham, our Developmental Disabilities Services Office (DDSO) Self-
Determination Liaison, whose care, sincerity and dedication were a real asset. We
felt comfortable going to her when issues came up and her follow-though and ‘stickto-
it-ness’ were remarkable. Also, instead of using a Start-Up Broker, my sister and I
worked on Alisha’s CSS budget. Janet Austin, Alisha’s Medicaid Service Coordinator,
was also instrumental in this process.
Now, Alisha’s days
are filled attending
workshops that interest
her and allow her to
pursue therapeutic and rehabilitative skill-building. One of her activities is Equine
Therapy (horseback riding) twice a week. At a recent physical, the doctor noted
the positive change in her muscle tone and her increased range of motion, which he
attributes to this therapy. Alisha also goes to the Cobblestone Music and Art Center
four days a week where she has a part in a production of Grease, as one of the pink
ladies. This is so great because music and dance have always been a part of her life.
CSS has given us hope again: during preschool Alisha used a limited vocabulary, then
as a result of being segregated, lost her ability to speak. Now, slowly, she’s starting to
use a few words in an attempt to use her speech again. This has reignited the hopes
and dreams we have for her independence.
It’s a challenge to take on the work that traditional agencies have long offered people
with disabilities, but the effort has helped improve Alisha’s life in so many ways! We
have become great advocates for CSS and make frequent presentations to groups on
how Alisha’s life has changed for the better. Everyone deserves quality of life: this
program goes a long way to making that happen.
We don’t waste time looking back at what didn’t work – we focus on what lies ahead.
Once you’ve experienced true self-determination, you set your goals and off you go!
I know Alisha wouldn’t have it any other way. Thank you to all involved for creating
CSS, which has enhanced Alisha’s quality of life. ~
Alisha during an
Equine Therapy session
It’s a challenge to take on the work that traditional
agencies have long offered... but the effort has helped
improve Alisha’s life in so many ways!
14
I’m 55 years of age, but a
kid at heart! I was born in
1949 to wonderful parents
who taught me to make
my own decisions – right or
wrong. Over the years I’ve
had plenty of opportunities
to make choices that have
affected my life.
For fifteen years, I was
involved in a day program
and lived in a group home.
I was so bored and wasn’t
provided with ways to keep
my mind stimulated. For
example, writing has always
been the love of my life and
I would have given anything
to volunteer my services to
the editor of the agency’s
newsletter.
I hated living in this facility and resented living under the rules and regulations of New
York State. There was little or no privacy or independence, and the residents were always
concerned about voicing our opinions to staff because if we did so our lives would have
been made even more unbearable than they already were. Living with nine other residents
was challenging: for example, at mealtimes I often had to listen to petty quarrelling
between other residents. Another time I was frustrated when the house supervisor made
me go to my day program five times a week instead of letting me stay home one day to
do homework or read a favorite book. Sometimes, I would have to sit in vain hoping
that someone would give me a helping hand with my meal (before I could eat, I needed
assistance preparing the food and ensuring the spoon was in the apparatus that I used to
feed myself).
I really didn’t have a life of my own, yet I was afraid to change my life for the better.
In 1994 I went in to the hospital for neck fusion surgery, and during my recovery I thought
about how I wanted to spend the rest of my life. I had many conversations with my Lord
about my future. I wanted to be free from all the demands of agencies and yearned to do
something worthwhile. I loved the idea of training seasoned and new employees about
disability awareness. I wanted to make a difference to trainees and consumers, and be as
productive as I could. I needed a lot of physical therapy after my surgery and began to receive
residential-habilitation services (commonly known as res-hab) from a not-for-profit agency.
However, the staff there did not meet my physical or emotional needs. Again, I felt as if I was
Directions
Deborah Jean Anderson
15
required to live by the State’s standards and not my own – that rules and regulations were
preventing me from becoming the person I felt I was inside.
I began to hunt for a different agency. A friend told me about the Finger Lakes
Developmental Disabilities Services Office (DDSO). It was there that my life took on a
whole new meaning. For the first time, I began sitting on committees for the DDSO such
as the Rights Committee and the Developmental Disabilities Education Network known
as DDEN. I remember when an employer came to ask me to sit on this Committee. I was
elated: at last ‘me as a person’ mattered more than my disability; finally people needed
me and valued my opinion. I remained on cloud nine for several months after that!
Eventually I was hired by Finger Lakes DDSO to do sensitivity training for new hires, just
as I’d hoped.
Consolidated Support and Services (CSS) gives individuals the kind of lives they so
desperately desire by allocating Medicaid dollars to provide the supports they need to
live their ambitions. My goal has always been to write my memoirs and when the Self-
Determination Pilot Project came along, I thought that my dream might come true.
My Circle of Support consists of family, friends, and folks who are important to me. They
provide the emotional and physical support I need in order to help me realize my goals
– like having my book sold around the world.
At the beginning of the process, I had
to submit a Person-Centered Plan to
the State. Roughly five weeks after
my plan was submitted the State
requested a more comprehensive plan, so for the next month my Circle and I met weekly
to make the necessary revisions, deletions, and additions. When we submitted the plan a
second time, the State wanted us to make even more corrections. Once more, we revised
it and returned it.
Several months passed. I felt that nothing we said would be good enough. My faith in
CSS began to wane: this was supposed to be the beginning of my new life. Family and
friends told me to hang in there and I decided to follow their advice. After all, what did
I have to lose?
When my proposal was finally accepted, we celebrated at our next circle meeting – my
service coordinator, Carolyn, brought pink ginger ale with bubbles! We met with the
Fiscal Intermediary about placing an ad in our local paper for an assistant. I read nearly
thirty resumes and eventually hired my current assistant, Patricia, who is super. I’d be
lost without her. She proofreads and edits the chapters of my book.
Thanks to this opportunity I’m living my vision, though I never could have accomplished
what I have without the support and encouragement of my family and my friends.
Without them, my dream wouldn’t be a reality – and I love living this dream!~
CSS gives individuals the kind of lives they so
desperately desire
16
Ever since high school my
dream was to become a history
professor. It was a big dream,
but I am now on my way to
attaining this life-long goal. I first
learned of the Self-Determination
Pilot Project from my Service
Coordinator at Livingston Wyoming
ARC in Mt. Morris, NY. She realized
that I needed more help if I were to
ever reach my dream of becoming
a teacher. A phone call to the Self-
Determination Liaison at Finger
Lakes Developmental Disabilities
Services Office (DDSO) brought
about an initial meeting, after which
my family and I hired a Start-Up Broker to assist with putting together a Consolidated
Supports and Services (CSS) plan.
The Start-Up Broker helped set in motion Person-Centered Planning
and soon the predominant theme that emerged was the importance
of my educational goals. The Start-Up Broker worked with me, my Circle of Support, and
my Service Coordinator, to design a CSS plan. There were many revisions, and it took a lot
of hard work, but eventually a plan came together and was officially approved.
Since I am receiving assistance from VESID (which is helping to pay for my college tuition
and some of my transportation costs), we decided to use CSS to help with the services
and supports that were not being covered by VESID. For example, we decided to use CSS
resources to lease a wheelchair-modified van to help me get to my college classes. (This
turned out to be a smart decision since my original, rickety old wheel-chair van broke
down beyond repair just days before my CSS plan was presented!).
Today I am attending SUNY Brockport and I have the help of staff that assist me with
refining my skills at home. I am able to purchase respite care from a respite provider so
my family can receive a much-needed break from the demands I make on them.
My Circle members and I would tell you that getting started with CSS is hard work: hard
because you have to learn to think for yourself and do things yourself. When describing
CSS, the words “you do it” come to mind. But I am doing it, and I feel very self-fulfilled.
I love the personal direction and control that CSS and self-determination have given me.
I have had the chance to recognize my dreams and go after them.~
You do it
Patrick Wilcox
I feel very self-fulfilled
17
I really like the Self Determination Pilot Project
using Consolidated Supports and Services (CSS).
It gives me a chance to have a real say in how I live
my life. It took me two years to get my CSS plan
off of the ground but all the preparation was worth it.
I had help from a real supportive Circle of Support:
my mom, my two aunts, my service coordinator and
people from the Western New York Developmental
Disabilities Services Office (DDSO).
The process involved setting up and getting approval for my CSS grant. It also involved
lots of interviews with prospective landlords to find a suitable apartment – it was really
important to me that I could have a four-legged friend living with me!
My CSS plan called for living on my own instead of in a congregate care system. People
who aren’t disabled can choose who to live with. I love to go out in to the community and
get to know people, but I was tired of having to live with strangers. It’s great that I no
longer have to follow an institution’s rules and can instead go by the contract I have with
my own landlord.
I also set up a contract with an agency so that they hire the staff that I, myself, interview.
Now, when I need a new staff person, I’m in charge of selecting them. I have night
blindness and I wouldn’t be able to go places at night without the help of my staff. They
take me out in the evenings and help me out in my apartment as well.
I am now also involved in another program at the Starlight art studios in Buffalo. I go
there every weekday and take classes in printing, painting, drawing and so on. When
I sell my work, I get to keep half the proceeds, and the other half goes back in to the
program to buy art supplies. I make paintings, drawings and some clay pieces.
One of the best things about living on my own is that I got to choose my own very special
roommate: my cat Guinevere, also known as Jenny. She’s black and white. When I moved
into my apartment, she did too!~
A different set of rules
Peter Franczyk
...it was really important for me that I could have a
four-legged friend living with me!
18
I free - I fly!
Merle Keller’s story,
told by his sister, Caroline White
Merle and I began
e x p l o r i n g
the Self-
Determination
(SD) Pilot Project using
Consolidated Supports
and Services (CSS) in late
1999 after being referred
the program by Stacey
Bickett from ARC Otsego.
This was spurred in part
by my desire to ensure
that Merle would be
able to continue to live
independently and work
in the community as he
had done all his life – even
when there might not
be any family members
to assist him. Merle was
accepted in to the SD/CSS program after an interview with a board of review at the
Binghamton Office of Mental Retardation and Developmental Disabilities (OMRDD). The
original Pilot Project only accepted 100 people and Merle was one of them.
Thinking that using CSS was but a short step away, I immediately found a realtor to find
a home for Merle. In September 2000, a three-family home was purchased, and Merle
– with staff hired by Delaware Opportunities – began to live there, along with the other
tenants.
In actuality, it took about 5-years for New York State to pass the CSS legislation, and so
while waiting we developed an ISP (still part of SD but at that time funded by Medicaid).
Once the CSS legislation passed in 2004 we, together with Jay Coloney of Delaware
Opportunities, began to form a CSS plan we felt would work for Merle. At this time,
Merle and I also met with several people from OMRDD about his plan. Merle told me
he was excited and happy, and we embarked on a journey to have the best possible plan
written for him.
Merle and I had several meetings with Judy Pease, an acting Start-Up Broker, in person
and then by phone, since I live in Florida. Merle and I discussed what kind of life he
would like to have and what kind of staff he would need. We also worked with Merle’s
extensive Circle of Support, consisting of over 30 people all of whom participate at various
Merle with Support Broker
Pathy Levia
19
levels. Most of them met at different times with the Start-Up Broker too.
We considered the various activities that Merle wanted to do, like join the YMCA, attend
sports and musical events, volunteer work, church, employment and other things that
would promote continued involvement in the community. Merle gave input and I
presented other ideas he might want to try and the social activities he had done in the past.
Circle members also gave their opinions. All the informal discussions we had had with
family and friends over the course of Merle’s life, together with the Circle meetings and
current research, contributed to the write-up of Merle’s plan. We also found a permanent
Support Broker in Pathy Levia, as well.
We had some technical meetings with the SD Committee, and after several revisions,
finally presented a finished plan. Once the plan was accepted, we learned it would
begin in January 2005 and we began to figure out what CSS would pay for. The Fiscal
Intermediary (FI) and Pathy worked together to get all the contracts in place and the
staff trained so that they could begin working for Merle. Pathy also works with me to
ensure that everything is being taken care of – as I consider myself to be Merle’s biggest
advocate.
The Support Broker is almost like a miniagency:
she takes care of scheduling,
community events, volunteer work,
and the reimbursement of expenses. She also ensures that the staff is being paid and is
receiving the required training, and that Merle’s goals are worked on daily. Merle and
Pathy sit together every week to talk about what Merle likes and what works for him.
They also produce a weekly schedule that best fits his needs and they select staff that
he would like to work with. Merle has the freedom to make his own choices and the
opportunity to work on different skills.
Merle likes his plan now and so do I. He has staff available to him whenever his schedule
requires it, and they assist with his various activities which include art class, OCEC
(classes for reading, math and computers), volunteer work, YMCA, sports events and
some shows. In the summer, Merle likes to go to baseball games, to walk, and to go to
the Farmer’s Market downtown to buy fresh produce to help maintain a healthy diet. He
also walks in the Pit Run (a charitable fund raiser for the benefit of community programs
in Oneonta) and walks for other good causes too. He takes trips to nearby towns like
Cooperstown, and enjoys the parks and the mall. Merle has friends in the community
who always are willing to lend a hand and take Merle out with them.
I am happy that Merle is receiving the best support and service possible after many difficult
times in the past with agencies. Using CSS, Merle has been able to design his own plan
rather than conform to an agency’s ‘one-plan-fits-all’ residential program. Merle says he
is happy, that he likes his staff, and enjoys his current job as a dishwasher at a restaurant.
He is finally living a life that he enjoys and is employing his own staff. Merle’s family,
friends and Circle of Support are proud and happy of his success. On many occasions
Merle can be heard to say “I free, I fly”! ~
Using CSS, Merle has... his own plan rather
than an agency’s ‘one-plan-fits-all’
20
When I was seven years old I was struck
by a car. It was an accident that left
me quadriplegic and dependent on a
ventilator. I felt confined to a life that I
hated and I knew there was much more.
Before the Self-Determination Pilot Project, I was
living with my parents, sisters, nieces and nephew
and spent most of my time in my bedroom. I saw
friends just three or four times a year, though we
talked on the phone whenever possible. If I was
lucky enough to leave the house it was usually only
once a week. Sometimes, if the weather permitted, I
would be taken out for a walk.
This activity level left me feeling trapped and I didn’t see a future for myself. My parents,
who had done a great job being my main caregivers for 17 years, were getting burned out
with the extra stress of having custody of my nieces and nephew. But I was afraid of the
unknown – of trying to make changes to my life or moving forward with Consolidated
Supports and Services (CSS). This all left me very depressed.
The things I liked about my life were getting out on Fridays, reading books, watching TV
and movies, seeing friends and spending time with my nieces and nephew. I also enjoyed
volunteering at an elementary school, and when I was younger I worked summers at a
youth program and looked forward to that all year.
Things that I didn’t like were not being involved in family activities, inconsistent nursing
care, and not being able to make my own decisions. I couldn’t make my own choices about
the food I ate, the money I spent, when I could leave the house, or my daily schedule.
My Medicaid Service Coordinator, Deb Bojarski, began working with me in October 2002,
and the following June she introduced me to CSS. I had always dreamed of living my
own life, and with my friend, nurse and mentor, Kelly Woolson, I had spoken often of my
independence. Still, I just didn’t believe that it could be done for someone like me. Deb,
and my nurses Kelly, Trina, and Pam, were the only people who said they believed in me
and that I could have a productive life.
With their support things began to move rather quickly. First, Deb organized the four
of them – plus an occasional friend – into my Circle of Support. My very supportive
landlord, Aaron Cass, who was found by ARISE, would be added later. My family was
not involved in any of the CSS process.
Open to all possibilities
Dennis Pullen
21
Then, with my Circle of Support in place, we began developing my Person-Centered
Plan, or PCP. We outlined my likes, dislikes, strengths and weaknesses in all aspects of
my life. Each Circle member took an active role in helping me achieve some short-term
goals. These goals might have seemed pretty simple to most people, but for a person with
special needs who had spent most of his life in his bedroom, they would prove to be a
real challenge. I had to compress 17 years of development into about twelve months, and
learn to address problems and be responsible for all aspects of my life.
Budgeting was, and still is, a difficult part of CSS for me. I had never had to deal with
bills, money or learning the value of a dollar. The idea of paying to lease a van, buy gas,
get a cell phone and other necessities, seemed out of reach, but my Circle of Support
really helped me. To this day I am continuing to learn about daily, weekly, monthly and
yearly budgets, but I now manage my own money (including bank accounts), pay my
own bills, and have become my own payee on my SSI check.
I spend my days doing what I choose and want to do. Without being involved in the Self-
Determination CSS program I would probably just have let life happen to me as I did for
the last 16 years.~
Without being involved in CSS... I would probably
have just let life happen to me
22
When I was a child, my favorite game was ‘playing
office’. In our basement playroom, I made
a table into a desk. I had a play typewriter,
a make-believe telephone and lots of paper
and pens. I loved shopping trips to Staples and my best
birthday gifts came from that store. My family bought
me files, folders, rubber stamps and desk organizers. For
Chanukah I always wanted calendars and planners for the
new year. When I went to high school, I got a computer
and my bedroom became my new office space. I had a real
metal file cabinet.
The career goal on my high school Transition Plan was
‘office manager.’ The director of my supported work agency asked me, “How many
words a minute can you type?” I said, “One,” and she told me that I would never be
able to work in an office. Fortunately, my parents did not accept that and insisted that I be
given lots of work experience in different types of offices. After graduating high school,
I was hired for a real office job and I have been an office worker since 1996. I am not the
office manager, but being part of the Self-Determination (SD) Pilot Project has allowed me
to reach the goal of office manager in another way: I manage all the office work needed
for my Consolidated Supports and Services (CSS) plan.
I used the money I’d saved in my vacation account to buy a machine that faxes, copies,
scans and prints, and with money from my CSS budget, I hired a computer teacher, Rich,
who helps me make charts and lists for my hospital volunteer work, as well as for my
office job. He is also teaching me how to scan and e-mail the CSS Service Documentation
to my Fiscal Intermediary, Alan. Each month, I send Alan the documents he needs. I also
keep a log of my expenses, such as the fee for my writing class at a local college. Then I
make sure that Alan reimburses me for the correct amount. My grandma and great-aunt
were bookkeepers and now I am following in their footsteps.
As my own office manager I sometimes create flyers for my Circle
of Support meetings. I also attend SD workshops to learn as much
as I can about the work I must do for my CSS budget. I brought my briefcase with me to
the SD conference because, for me, it was a business trip.
Linda, my service coordinator – the best in the world! – helps me place ads for life coaches.
She and I do the interviewing, I do the hiring and scheduling. My life coaches have
become important members of my Circle of Support and my Circle members are like
office co-workers. I have never had to fire anyone yet, but if I am not happy with one of
them I will have to say, “You’re fired!” It’s good to be the boss!~
Managing my office –
managing my life
Mandy Shenkman
It’s good to be the boss!
23
Citizens of our society
Nicole Hastings
I want to tell you about my decision
to pursue Self-Determination using
Consolidated Supports and Services
(CSS).
When I was nine my mother sent me to
a camp for young adults and individuals
with disabilities. While there I met my
best friend and number one fan, Mike
Becher (my hero!). He helped me realize
that, despite what educators and the
world seemed to think about people with
disabilities, we can be citizens of our
society and make important contributions.
With this realization in hand, I exceeded
everyone’s expectations and completed
my education, even though many people
said I couldn’t.
After graduation I entered a day-hab
‘without walls’ program and began
volunteering with AmeriCorps. I soon realized that the this program was not meeting my
needs and goals and went to my Medicaid Service Coordinator to ask for a program that
would work for me. She introduced me to CSS.
During the planning stages, I decided my ultimate goal
was to live independently. I wanted supports and services
to allow me to lead a productive and independent life. At
first, my family and friends felt that living alone wouldn’t be feasible – that I didn’t yet
have the skills necessary to be successful. So my Circle of Support decided I should move
in with my grandmother to learn the life skills I would need in order to live on my own.
We also realized that I needed a van that was wheelchair-accessible so that I could use a
power wheelchair and be more independent.
By January 2005, I was confident I had gained the necessary skills and I started to look for
an apartment. I’m proud to say that in March 2005 I got my van, ‘the Tweety mobile,’ and
two days later I moved into my very own apartment. Throughout this whole process my
family has provided ‘technical’ support, and Mike has been my emotional support.
I hope my story will help inspire you to follow your dream. You never know: one day,
when you’re least expecting it, you’re very own number one fan – like Mike is to me
– might show up to cheer you on.~
I got my van... and moved
into my very own apartment
24
I began my new life in
September 2004. That
was the month that I
left group homes and
agency-run day services
forever and became part
of the Self-Determination
Pilot Project.
I lived in three group
homes and one twoperson
apartment It was
hard and definitely not
for me. There were many
rules and restrictions, like
frequent fire drills, that I
did not like or agree with.
I already knew how to get
out in case of a fire because
I did many fire drills in my
lifetime!
In one of the group homes,
they always cooked fried
food. That can make you
really fat! In the other
group homes, they had menus that came from the main office of the agency, without
asking the guys what they wanted to eat. Guys should have choices in their home. I
started Weight Watchers but the staff did not know how to help me. The manager bought
me Weight Watcher’s frozen dinners, but said it was too hard for the staff to learn about
counting points, so my parents helped me bring my own food, and taught me how to
write down my points. I called my mom a lot for help! I had to bring “lock bags” for the
refrigerator and freezer so that no one took my food or threw it out. It was ridiculous.
I did not have freedom to come and go to the activities of my choice.. I did not like
doing activities with some of the guys because they sometimes got out of control and it
embarrassed me. Sometimes I got nervous, and so I refused to go to the outings the house
planned.. Then no one could go, and they got angry at me.
When there were things I wanted to do, other guys always had to come with me. I
couldn’t play on my baseball team unless someone was able to take me, there was a
My schedule works around me
Steve Fleisher
25
car available, and other guys were willing to come along for a ride. I worried about it
all week. Finally, my parents took me to my practices and games. When I went to my
personal appointments, I had to lock the passenger car doors, or one of the other guys
would get into the car..
When there was not enough staff, you were stuck in the house. In one of the group homes,
two of the guys needed one-on-one support,, leaving one staff for the remaining four
guys. Once, all day long they promised to take me to 7-11, but they kept needing to help
the other guys. Finally I said, this is ridiculous and went by myself. Next thing I knew,
they had called the cops because I was out alone. I just wanted to buy a newspaper and
soda!
Sometimes some guys would get out of control, and damage the walls, scream or yell.
Sometimes I yelled back at them, but it only made things worse. I know they couldn’t
help it, but it drove me nuts.
My day services were called “Opportunities Without Walls”. It was just me, with one
worker, and we were supposed to do stuff in the community. That was the good part.
Here is the bad part...it was only from 10am to 3pm. That made it very hard to get
anything done.. I love to travel into Manhattan by train, but by the time I would get there,
I would have to turn right around. I wanted a job, but nobody hires someone for just those
hours.
Group homes and agency programs might work for some people, but I was determined to
live on my own and have my own life. Then my parents heard about Self-determination
using Consolidated Supports and Services (CSS). At that time, there were no Start-up
Brokers. Now you can pay someone to help you get started. But I was very lucky because
I had a great Circle of Support who helped me get everything going.
There are many reasons CSS works
for me. I live alone in my own
apartment, with support staff
always there to help me. I hire
and supervise my own staff, with
the help of my parents. . In a group home, my activities had to work around the staff’s
schedule, but with CSS, the staff’s schedule works around my activities. I can go on my
personal appointments alone, make my own schedule, organize how to get to my baseball
games, get my own job and work the hours I want to work. I can go to Manhattan --or
anywhere else --whenever I want without having to get permission from an agency. Last
Labor Day, I got to do something I always wanted to do: I volunteered and answered
phones at the Labor Day Telethon. I can choose to do activities with other people who
have disabilities, or people without disabilities.
I am now part of the New York State Self-Determination Speakers Bureau, where I speak
to agencies, classrooms and colleges about self-determination. This is a paid position, and
I don’t have set hours, which is great.
I am really interested in law enforcement. I really wish I could be an undercover cop in
the street crime unit in a law enforcement agency. Maybe some day I could get involved
in something like that. I would also like to increase my time spent advocating for people
with disabilities, and advance my career doing that. With CSS, it is possible.
Now I have a real life!~
CSS really works for me. I live alone in my own
apartment and, with the help of my parents,
hire... staff to assist me
26
Have you
ever done
s o m e t h i n g
for a long
time and then realized
that you wanted to
make a change? Did
this change happen
overnight or did it take
a while? I was in a
situation like that and
I’m really happy that I
made the change in my
life that I’d hoped to.
I attended the CP
Rochester Center for 18
years. I learned a lot of
great things and really
enjoyed working with
the staff there. While
I was at the Center, I
worked as a member of AmeriCorps and discovered that public speaking was the thing
I really like to do. When my term with AmeriCorps was up, day habilitation supported
me in volunteering for AmeriCorps two days a week. (Actually, I wish that I could have
volunteered everyday!)
During this period, I learned about the Self-Determination Pilot Project and three years
ago I started working on my own Consolidated Supports and Services (CSS) plan. It costs
Medicaid so much money to allow me to attend a program like the CP Center. Instead,
CSS means being able to work with Medicaid on how I want that money to be used: on
how to spend my time and what services I want to receive.
With the help and support of my Service Coordinator, some friends and my mother, we
came up with a plan for me to get my own van and a personal assistant. This was a long
process, but on January 20, 2005, we found out that my plan was approved.
I got the van first. I had to go through the steps of signing the lease and getting the
insurance. My van has a ramp that allows me to get in and out, and I sit right up next to
the driver. Having my own vehicle makes me feel as free as a butterfly because I can go
everywhere in my electric wheelchair and be totally independent.
Make a change
Kim Henchen
27
The next step was to find a personal assistant. LDA Learning and Lifetime Services is the
Fiscal Intermediary (FI) for this project: this means that they help me pay my bills and
manage my money. The head of human resources there assisted me in putting an ad in
the paper for a personal assistant. At the same time, I sent an email to my family and
friends telling them about my great CSS news and one of my friends, Marie, wrote back
to say that she was interested in the personal assistant job. She used to work with me
at the CP Rochester Center and was familiar with the type of help I needed. I set up an
interview with her and was pleased with the results – so I hired her.
Marie comes everyday: she helps me with my volunteer work, accompanies me to the
Self-Advocacy office, and makes sure I get to all of my presentations. I have been busy
doing children’s presentations and some staff trainings at the Developmental Disabilities
Service Office (DDSO). Marie and I work really well together and I am very happy.
I also have money for a residential habiltator and respite staff and am in the process of
hiring someone for both positions. The respite staff will stay with me when my mother
wants to go out occasionally.
I miss everyone at the Center but I get to see them on the days that I have therapy. Having
my own transportation, and having Marie as my assistant, makes me feel so independent.
I love the things that I am doing now. Making changes can be scary and can take time
– but I found out that the CSS process is worth everything! ~
Having my own vehicle makes me feel as free as a butterfly
28
After I got out of school I spent a year
at home before attending a series of
day-habs. At the first day-hab, we
did some things in the community,
but I wasn’t happy there. When they tried to
make me ride with a transportation service
that was unsafe and dirty, I left.
The next place was part of a nursing home
where most of the residents were older people.
We did not go out in to the community. We
watched movies that the staff picked out
for us. Eventually I found a way to spend
the majority of my day with the nursing
home residents who had no visitors. When
the administration discovered that I was
checking out other day-habs in the area I was
asked to leave.
At the third day-hab, we spent a lot of time walking the malls and once in a while we
went bowling. However, I became good friends with the director of the facility and he
knew I wasn’t happy in that setting. When the Self-Determination Pilot Program using
Consolidated Supports and Services (CSS) first came along he did the paperwork and
submitted my name. He didn’t say anything to me about it because he didn’t want me to
be disappointed if I wasn’t picked.
Shortly after submitting my name, the director was offered a job with a different
organization and asked me if I wanted to come along and attend that day-hab instead. I
did. However, just before we left I found out that I had been selected for CSS.
I started to put my Circle of Support together. It’s a small but powerful group which
consists of my mother, my service coordinator, some friends and my personal assistant.
We had numerous meetings, including many with the people from Central New York
Developmental Disabilities Services Office (CNYDDSO). With the help of TLC (a medical
transportation service) we did a lot of research into transportation costs. It became clear
that it would be less expensive to actually buy a van than to lease one or rely on a service.
So, with the help of my Circle I was able to actually purchase a van of my own. I also hired
a personal assistant who helps me throughout the day: he drives me everywhere I need
to go (for example, I go for therapy (OT, PT, and Aquatic) three times a week); fixes my
lunch; takes notes at meetings and helps me get ready for Aquatic therapy sessions.
After joining CSS, I became an AmeriCorps member for two years. After that, I worked
Freedom to be myself
Scott Wing
29
for two years at the CNYDDSO as an Advocacy Specialist. Since leaving there I have
stayed very busy in the community. I do new-hire trainings at the CNYDDSO and I am
involved in numerous volunteer activities for Enable. For example, I worked on their
capital campaign and put together a PowerPoint presentation for them to use for their
new-hire orientations. I am on their community development committee, and have also
visited various doctors’ offices to deliver information about Enable and the services they
provide.
In addition to all that, I serve on advocacy committees at Enable and the CNYDDSO,
and am on a public transportation committee that advocates for people with disabilities.
I am a past board member for the Human Policy Center and I also advocate for people
who have no one else to advocate for them. I volunteer at Upstate Medical University
Hospital, too.
In May 2005, I was invited to go to Albany to receive an award from Senator DeFrancisco
for my advocacy work.
With my new-found freedom I am much more independent. I no longer have to go to
a day-hab facility. In fact, through the New York State “Home of Your Own” program I
have been able to buy my own house.
Without CSS, I would still be a very unhappy person attending day-hab. CSS has given
me the freedom to be myself, to do the things that I enjoy, and to give back to my
community. ~
CSS has given me the freedom to be myself, to do
the things that I enjoy, and to give back to the community
30
I was born with soft bone disease and I use a motorized wheelchair to get around.
I have four siblings, one brother and three sisters, and I am the only one with a
disability. I was born in 1963 and growing up, I did not have an opportunity to go
to public school. The only education I received was from a tutor for one hour a day
– obviously not a very good education. Finally, a social worker researched and found the
Long Acres School for the disabled and I was accepted there at the age of 16.
This was the turning point in my life: I
had friends, I met people for the first time
who were disabled like me, I traveled on
a school bus, I dated, and I was part of the real world. After a few years, I mainstreamed
into the public school system and I graduated when I was 21 years old. I then went to
a sheltered workshop, and, after that, a day habilitation program where I learned to be
more independent. I became a volunteer at the Long Island State Veterans Home and I
joined AmeriCorps. This was the starting point for my career path. I was educating the
community about disabled individuals.
As a public speaker with AmeriCorps for two years, I had an opportunity to bring
awareness about disabled individuals to the public. This was a very positive experience
for me. After the program ended, I felt very strongly about continuing: I feel people need
to know we are just like everyone else.
Turning points & challenges
Cathy Van Laar
Cathy and support staff
Most importantly, I’m becoming more
confident and independent
31
Cathy Van Laar passed away in 2005. She was passionately committed to the idea
of Self-Determination and her story is published here to honor her memory.
In my pursuit to be a speaker, I contacted Marisol Getchius, an advocate from a Suffolk
County agency. We discussed my goals in life and she gave me an application to become
part of the Self-Determination Pilot Project using Consolidated Supports and Services
(CSS). Here I am five years later well on my way to fulfilling my dream.
Getting started in CSS required me and my Service Coordinator, Joe Boardman, to
write up a plan for the future and what I hoped to achieve in life. After we researched
grants and how to set up a small business, I was more determined than ever to succeed.
Integral to this process was the involvement of VESID, the Developmental Disabilities
Services Office (DDSO), and Professor Edward Fritz, the Director of the Small Business
Development Center at Stony Brook. I formed my Circle of Support made up of people
whom I chose to assist me in achieving my goals, and we worked together to set up a
budget, and to determine staffing needs, job descriptions and salaries. We meet every
two months to review progress, research and brainstorm new business ideas, and to make
adjustments as needed.
I interviewed and hired my own staff, (a personal aide, Service Broker, and Employment
Support person) and, with help of the DDSO, an agency was hired to be my Fiscal
Intermediary to handle finances and business expenses.
I’m thankful each day that I’m involved with CSS. My learning is on-going and, most
importantly, I’m becoming more confident and independent. I accept any challenge that
comes my way. I encourage others to follow the same path I have chosen and to always
work toward fulfilling their dreams.~
32
My first and foremost love is
being able to reach out to help
others, and the door that allows
me to do that opened on July
18, 1995. That was when I was evaluated
for Facilitated Communication and my
silence was broken forever. From that day
forward, I have been able to demonstrate
my capabilities and intelligence.
The ability to type on my computer and
have my thoughts read for all to hear; to
have my Person-Centered Planner clarify
those thoughts using colored markers on
paper; to sit with my Circle of Support
and share dreams that have been a part
of me for so very long; to have my Circle
brainstorm on how to make my dreams a
reality – that is one exciting, mountaintop
high!
My life was not always this promising. I
grew up in Pennsylvania and spent my
school years in self-contained classrooms
for the retarded. We were taken out for
specials such as art, adaptive physical education and music – and on good days we joined
the rest of the school for programs in the gym. The best time of the day was taking the
lunch count to the cafeteria and notes to the office. I was never included in an academic
setting and what I learned I gleaned from home and TV.
After I aged-out of the school system, I spent three days a week in a sheltered workshop
where I put paint sets together and wires in a bag. The other two days were spent in a
day program that taught me life skills: I learned to make a bed – over and over and over
again; I identified a penny, nickel, dime, and quarter, month in and month out; I matched
colored teddy bears to colored cards and I colored pictures torn out of a coloring book; I
can make toast with my eyes closed. Need I go on? The program aides were very kind
and caring: it was the program that was the problem.
All this time I knew I could communicate but had no way to express it. I kept watching
other people and seeing how productive they could be in society once given the chance,
and my frustration raged within me.
One exciting mountaintop high!
Jenn Seybert
33
Then July 18, 1995 came. I was now free! It took a year of getting used to being able
to share my thoughts. It also took a while for me to trust. However, at some point,
my mentor who was helping me develop my typing skills, felt I was ready for help on
another level – that is was time to choose an agency to help me plan my future.
I actually had a Circle of Support and a Self-Determination piece in place, long before
Pennsylvania provided funding. Rosa McAllister’s agency, Networks for Training and
Development, supported me in Pennsylvania since my county MH/MR (the PA equivalent
of OMRDD in NYS), did not have the experience or the knowledge that Networks had.
Besides reaching out to others through keynote addresses, I gave trainings and workshops
for the Pennsylvania state-wide Office of Mental Retardation and Developmental
Disabilities (OMRDD). Topics included Autism, Facilitated Communication, Self-
Advocacy and Self-Determination.
Because I never got to experience any academics in my high school years, I wanted to go
to college. I love learning and am hungry for knowledge. My Circle met many times as
we figured out how to make this happen. I chose Penn State and became a matriculated
student there after building my courses semester by semester. By the time my father
accepted a new position in central New York, I had earned 33 credits and transferred
them to LeMoyne College.
I was the first in PA to access Self-Determination funding, and when we moved to central
New York I had to begin the process again and locate those who were working in that
project. New York was just beginning with the concept of Self-Determination using
Consolidated Supports and Services (CSS). I was the first applicant and it took 18-months
for me to receive funding. I also needed to form another Circle but did not yet know
many people in the area. My new Circle is still evolving as it changes with people moving
in and out of my life.
My CSS dollars go towards
hiring Bridge-Builders to
link me to the different
communities we visit, such
as museums, theater-arts,
or other community events. I use the YMCA for therapeutic swimming. I also have a
Start-up Broker who is helpful and creative, thorough and hardworking.
On May 21, 2006, I will graduate from LeMoyne College with a BA in Psychology and I
am a member of the National Honor Society for Psychology majors, (Psi Chi). Soon I will
need my Circle of Support more than ever to help with decisions I need to make about my
future: furthering my education by going onto graduate school, taking a paid internship,
or looking for employment in the area of counseling. My life is wide open. With my
Circle around me I will have guidance to sort through my options, and help with hiring
the support staff I’ll need.
Folks with disabilities are sometimes seen as society’s throw-a-ways. It’s great to watch
folks with disabilities discover they have choices; that by using their voices they can
decide what they want their lives to look like. It’s exciting to observe and wonderful to
experience personally. Self-determination using CSS is a blessing.~
It’s great to watch folks with disabilities discover they
have choices... they can decide what they want their
lives to look like
34
My interest in the Self-Determination Pilot
Project began when I was past-president
of the Self-Advocacy Association of New
York State, and attended a training session.
At that time I lived in a group home where I had little
choice and was not growing as a person. The only
way for me to go out to a movie was if it was a group
decision. I was attending a day-hab and I didn’t like it.
I answered phones and worked in a store, and also got
different therapies.
Consolidated Supports and Services (CSS) sounded
like a good idea for me because I wanted the chance
to direct my services myself, the way I wanted them.
First, I put together my Circle of Support consisting of
friends and staff. I also hired a Start-Up Broker to assist my Circle with turning my ideas
into a plan. From there we developed a staffing schedule and started to recruit my staff
– one person to work with me during the day and another as a backup. By advertising
under ‘business’ (instead of under ‘human services’) I managed to hire someone with the
skills necessary to help me develop my own consulting business.
Now, I bring issues and problems to
my Circle members and they offer
advice and suggest different options.
Ultimately, I decide on what to do. I
direct my therapy schedule, and I visit a local gym as part of my CSS budget and plan. If
I can’t make my appointment, I call and reschedule - it’s up to me to deal with it.
They didn’t think I was going to use CSS but I really shocked them! With CSS I have the
support I need to work on my presentation skills and develop my business as a disability
awareness educator for companies.
You have to give people a chance to work on their goals. We need to be teaching
other people that we can manage our lives and are part of society – even if we need
support to do what we want. All my peers need a chance to figure out a plan and try
this. We’ll show all the agencies we can do it! I hope all the agencies get on board with
Self-Determination using CSS.~
Give people a chance
Joey Perez
We need to be teaching other people that we can
manage our lives and be part of society
35
I have been in a wheelchair
for 43-years and I’ve lived
in group-homes for a long
time. I spent fourteen
years in Rome and often felt
like nobody wanted to take
care of me. From there I went
to the O.D. Heck Center where
I felt very comfortable. The
people who took care of me,
and the programs I attended,
were good. While there, I was
a student at Maywood High
School in Schenectady. After
that, I went to a group-home
in Cairo and attended Hudson
High School from 1980-82. I
enjoyed those years. That was
followed by 18 years at Van
Rensselaer Boulevard, yet
another group home.
For the most part, at the group
homes, there were lots of
personality clashes and the
staff was no better than OK.
Due to company policy or
institutional rules you couldn’t say or do
anything. You had to abide by what they
told you to do – they even told you what
time to go to bed! I couldn’t deal with that anymore.
Now, as part of using Consolidated Supports and Services (CSS), I live in my own
apartment with my roommate, and that’s a good thing! I have total choice over what I
do. I cook when I can: the stovetops are really high, but I can work around that. I love
cooking! I love my staff, and the people in my Circle of Support really care about me and
support me in my day-to-day decisions.
It’s nothing like how I used to live. Self-advocacy helped me speak up for myself and
move on to a better life. People did not think I could do what I do now. With the help of
CSS I proved them wrong! Yeah, I sure did!~
Move on to a better life
Larry Sutliff
I have total choice over what I do...
It’s nothing like how I used to live
36
A picture of who I am
Clint Perrin
I was born with a developmental disability - the result of
a car accident my mother had while pregnant. I grew
up in Brewster, NY, attended public schools, went to an
ARC workshop and had a job in a supermarket. I lived
with my parents, then in a supported apartment, and then
in my own apartment.
I’ve been involved in Self-Advocacy (SA) since 1993, through
the Office of Mental Retardation and Developmental
Disabilities (OMRDD) and through the Self-Advocacy
Association of NYS (SANYS). I was SANYS board president,
an SA/AmeriCorps member, and eventually I moved to
Schenectady to work for SANYS.
I learned about Self-Determination in 1997 when I was SANYS president. Some colleagues
attended a national conference on SD and we then wrote up a proposal for SD in NYS. We
presented our ideas to Commissioner Maul and he said ‘let’s do it’.
In 2004, working at SANYS, I helped develop the New Options Institute, a training
program for Start-Up Brokers. During the training, we developed a Person-Centered Plan
for my life. It was a dynamic process: I really liked that by reading it you could get a
picture of who I am.
I thought it would be hard for an agency to
provide flexible enough supports to cope
with my Plan. I decided to use Consolidated Supports and Services (CSS) because I knew
it could provide for my needs. In Schenectady I had a new Service Coordinator who
didn’t know me well, so I found a Start-Up Broker to help complete the CSS application
and organize a budget and weekly schedule. She really helped move the process along.
Through CSS I hired someone to help with managing my finances, maintaining my
apartment and building connections in the community.
To get support at work I had to re-connect in Schenectady with Vocational and Educational
Supports for Individuals with Developmental Disabilities (VESID) which provides funding
for employment supports. This was long process and postponed my CSS approval, but
in the end it turned out well because VESID funds a job coach as part of my CSS plan.
I also formed my Circle of Support which is different from traditional agencies because
it consists of people who have known you your entire life. There are both family and
friends from Brewster, and friends and co-workers from Albany, in my Circle.
My hope for the future is that I am able to continue my work with policy and advocacy
issues, and maybe own my own home with my partner. ~
I knew CSS could provide for my needs
37
Some words of gratitude
Thanks so much to the people who have told their stories
in this booklet. We believe they will inspire many others
to speak up for themselves and create the life they
want through self-determination and other individual
supports.
Thanks also to the wonderful staff, volunteers and supporters of
SA who have worked with great dedication to help develop selfdetermination
as an option in New York State.
In addition, much appreciation goes to our partners at OMRDD. A
number of years ago we spoke to Commissioner Maul and asked
him to help us create opportunities for people to take charge of
their lives. These stories are examples of some people who are
doing just that. We are proud of the work we have done with the
staff of OMRDD, creating this self-directed option of support. We
are committed to continuing our work by improving the process
and spreading the news throughout NY about the opportunities
for self-determination.
Finally, we want to express our gratitude to the Developmental
Disabilities Planning Council (DDPC) for providing the funding
for our work on self-determination, which includes the printing
of this book. In addition to funding support, DDPC members
and their great staff have provided much assistance and
encouragement throughout the process of creating opportunities
for self-determination.~
The Board of the Self-Advocacy Association
of New York State, Inc.
May, 2006
Contacts
OMRDD Central Office: 518/474-4904
Allen A. Schwartz, Ph.D: Director SD/CSS Pilot Project
Shelly M. Okure: Statewide Coordinator
Joanne Bushart/Ray Pierce: Regional Coordinators
For general information on the SD/CSS Pilot Project:
Dee Richardson: 518/474-5647
Self-Advocacy Association of NYS Inc.:
Steve Holmes or Daniel Borgia: 518/382-1454
Capital District: Pat McBride 518/382-1454
New York City: Kate Buncher 212/627-2104
Hudson Valley: Jordan Jankus 914/493-8667
Buffalo: Sophia Roberts 716/517-2342
Rochester: Lyn Zyla 585/461-8776
DDSO:
Bernard Fineson: Cheryl Dorell 718/217-2478
Brooklyn: Debra Smith: 718/642-8751
Broome: Garry Naylor/Judy Pease: 607/770-0255
Capital District: Eric Pasternak: 518/486-1313 x134
Central New York: Doris Moore: 315/473-6917; Debra Bojarski: 315/473-4003
Finger Lakes: Elaine Peckham: 607/734-6135 x23
Hudson Valley: Donna DuBreuil: 845/947-6060
Long Island: Barry Seidel: 631/493-1804
Metro NY/Bronx: Marjorie Allen: 718/430-0371
Metro NY/Mahattan: Evette Herdsman: 212/229-3127
Staten Island: Jack Lawrence: 718/982-1944
Sunmount: Mary Borst: 518/359-2962
Taconic: Richard Schmidt: 845/473-5050 x156; David Garvin: 845/877-6821 x3917
Western New York: Anne Haberer: 716/517-2148; Kitty Eagan: 716/517-3532
NYC Regional Contact: Maureen Abrams: 212/229-3299

A publication of the
Self-Advocacy Association
of New York State, Inc.
This publication is funded in part by the Developmental Disabilities Planning Council of New York State