develop a dream of what you want to do 
Summer 2005 Beginning 
the 
self-determination 
newsletter New 
Self-Determination Might Be 
What You’re Looking For 
By Clint Perrin 
Self-Determination (SD) began with an idea that came 
from people with developmental disabilities, and their 
families as a way to gain more control over their supports 
and services. People using Self-Determination decide, along 
with family and friends, how they want to be supported and 
by whom. They decide who to interview and hire as support 
staff, and arrange their own weekly schedule of supports. 
This is often called self-directed services. In New York State 
individuals, together with their circle of support, actively 
manage their own annual budget using a new waiver service 
called Consolidated Supports and Services (CSS). 
Self-Determination is important to self-advocates because it 
is a way for us to get the lives we want, with the freedom to 
do what we want. It allows us to select supports we need - 
and gives us authority over those supports by paying for them 
and scheduling them when we need them. It also means we 
have the responsibility not to ask for too much, and requires 
us to be accountable for the use of public dollars. 
You can hire a Start-up Broker to assist you for a limited 
amount of time with the process of self-determination using 
Consolidated Supports and Services. The broker can help 
you develop a circle of support, facilitate a person-centered 
plan, and create your daily schedule and budget. We have the 
guidelines, application and Start-up Broker directory on our 
web site: www.sanys.org - or, for more information, you can 
call Clint Perrin at the number below. 
The Self Advocacy Association has a training curriculum for 
self-advocates, family and staff/providers to learn the basics 
about Self-Determination. It covers the entire process 
from beginning to end including: Start up Brokers, Circles 
of support, Person-Centered Planning, Budgeting, and the 
Consolidated Supports and Services approval process. 
If you are interested in this presentation, or would like more 
information about Self-Determination, call Clint Perrin, 
Statewide Project Assistant, at (518) 382-1454. 
Dennis 
Self— Determination 
Stories: 
Hi, my name is Dennis 
Pullen. I was struck 
by a car when I 
was seven years old 
- an accident that left me 
quadriplegic and ventilatordependent. 
Before Self- 
Determination I was 
living with my parents... and spent most of my time 
confined to my bedroom. I didn’t see a future for 
myself. 
My Medicaid Service Coordinator, Deb Bojarski, 
began working with me around October 2002 and 
introduced me to Self-Determination in June 2003. 
She helped me create a Circle of Support consisting 
of my nurses and Deb along with an occasional friend; 
together, we began developing my Person Centered 
Plan, or, PCP. We outlined my likes, dislikes, strengths 
and weaknesses in all aspects of my life and each 
member took an active role in helping me achieve 
some short-term goals. 
My nurses, along with Deb, were the only people who 
believed in me and said I could have a productive 
life. Since Self-Determination my life has changed 
dramatically. I now manage my own money, pay my 
own bills, and I have become my own payee for my SSI 
check. I spend my days doing what I choose and want to 
do. Without being involved in the Self-Determination 
program I would probably just have let life happen to 
me as I did for the last 16 years. 
For the full story, see our website: www.sanys.org 
Dennis 
with 
Circle 
Members 
Kelly, 
Trina & 
Deb 
“ The biggest change in my life 
is the change in my self-esteem” 
CENTRAL REGION

New Beginning ~ Summer 2005 
2 
My name is Cathy Van Laar. I was born with soft 
bone disease and I use a motorized wheelchair 
to get around. Growing up, the only education 
I received was 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 
where I went at age 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. Eventually, I 
mainstreamed into 
the public school system 
and graduated at 
age 21. 
Until 1998 I went to 
a sheltered workshop 
where I learned to be more independent. I became a 
volunteer at the Long Island State Veterans Home and 
I joined Amercorp. This was the starting point for my 
career path: I was educating the community about disabled 
individuals. 
As a pubic speaker with Americorp I had an opportunity 
to bring awareness about disabled individuals to the 
public. After the program ended, I felt very strongly 
about continuing: I feel people need to know we are 
just like everyone else. 
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 
Cathy 
Self— Determination 
Stories: 
program. Here I am five years later well on my way to 
fulfilling my dream. 
Getting started in self-determination 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 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 self-determination. 
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. 
Cathy 
with 
Marisol 
Gretchius 
and 
Joe 
Boardman 
“ I’m becoming more confident and independent. 
I accept any challenge that comes my way. ” 
LONG ISLAND 
Cathy Van Laar passed away suddenly and unexpectedly in May. 
She was passionately commited to the ideas 
of self-advocacy and self-determination. 
She was eager to tell her story 
and we publish it here to honor her memory. 

3 
New Beginning ~ Summer 2005 
My name is Mandy Shankman. When I was a 
child, my favorite game was ‘playing office’. In 
our playroom, I made a table into a desk with 
a play typewriter, make-believe telephone and paper 
and pens. My best birthday gifts came from Staples: 
files, folders, rubber stamps and desk organizers. For 
Chanukah I always wanted calendars and planners for 
the New Year. During high school, I got a computer 
and my bedroom became my office. I had a real metal 
file cabinet. 
My high school Transition Plan career goal was ‘office 
manager’ but the director of my supported work 
agency told me that I would never be able to work 
in an office! My parents did not accept that: they 
insisted that I be given lots of work experience in 
different offices. After graduating, I was hired for a 
real office job and I’ve been an office worker since 
1996. I am not the office manager, but being part of 
Self-Determination has allowed me to reach my goal 
in another way: I manage all the office work needed 
for my CSS plan. 
I used saved vacation money to buy a fax machine 
that copies, scans and prints, and CSS budget money 
My name is Larry Sutliff. I have been in a wheelchair 
for 43-years. I lived in group homes for more than 
30 years. There were lots of personality clashes 
at these homes 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 my self-determination project, I live in 
Mandy 
Self— Determination 
Stories:
Larry 
Self— Determination 
Stories: 
Managing My Office – Managing My Life 
my own apartment with 
a roommate. It’s great! 
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-today 
decisions. 
It’s nothing like how I used to live. Self-Determination 
helped me speak up for myself and move on to a better 
life. People did not think I could do what I do now. I 
proved them wrong! Yeah, I sure did! 
to hire a computer teacher, 
Rich. He helps me make 
charts and lists for my 
hospital volunteer work and 
my office job. He is also 
teaching me how to scan and 
e-mail all the monthly CSS 
Service Documentation to 
my Fiscal Intermediary, Alan. I keep master copies on- 
file and keep a log of my expenses and make sure Alan 
reimburses me the correct amount. I am following in 
the footsteps of my grandma and great-aunt - they were 
both bookkeepers! I also attend Self-Determination 
workshops and bring my briefcase along because, for 
me, it’s 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 all the scheduling. My life 
coaches have become important members of my Circle 
of Support and my Circle members are like office coworkers. 
I 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! 
“ It’s good to be 
the boss!” 
LONG ISLAND 
CAPITAL DISTRICT 
“ I have total choice over what I do”

New Beginning ~ Summer 2005 
4 
Joey 
Self— Determination 
Stories: 
NEW YORK CITY 
My name is Joey Perez. 
My interest in Self- 
Determination began 
when I was past-president of 
the Self- Advocacy Association, 
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. 
Self-Determination sounded like a good idea for me 
because I wanted the chance to direct my services 
the way I wanted. 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 
human services) I managed to hire someone with the 
business skills necessary to help me develop my own 
consulting business. I bring issues and problems to 
my circle members and they offer advice and suggest 
different options. Ultimately, I decide on what to do. 
Now, 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. 
“ With CSS 
I have the 
support I need 
to work on my 
presentation 
skills and 
develop my 
business” 
Broome DDSO 
Reaches Out 
Merle Keller (left) and 
Pathy Levia at Broome 
DDSO after the SD 
Outreach Session in 
March. More than 80 
advocates, family and 
staff attended. 
Pathy is a Start-Up Broker who has gone through the CSS 
approval process with two people. 
For more information on outreach sessions contact 
Daniel Borgia at 518-382-1454. 
How Can I Learn More About 
Self-Determination? 
Through a grant from the Developmental Disability 
Planning Council (DDPC), the Self-Advocacy 
Association of New York State (SANYS) in 
conjuction with the Office of Mental Retardation and 
Developmental Disabilities (OMRDD) is providing 
training on Self-Determination using Consolidated 
Supports and Services (CSS). 
SANYS, in partnership with OMRDD, has been 
conducting outreach sessions on Self-Determination. 
Topics covered include: getting started, the roles of the 
Medicaid Service Coordinator and Start-Up Broker, 
Circles of Support, Person-Centered Planning, Budget, 
Weekly Schedule and the CSS application process. The 
outreach sessions have been well-attended by anywhere 
from 50 to 100 advocates, family members, and service 
providers. 
In addition to the outreach sessions scheduled at each 
DDSO, SA has also developed a curriculum for selfadvocates, 
family and staff to learn more about the 
basics of Self-Determination using CSS. 
CSS is a pilot project in New York State for 200 people. 
The CSS plan includes submitting an application, a Circle 
of Support, Person-Centered Plan, Annual Budget and 
Weekly Schedule. The position of Start-Up Broker has 
been created to assist you in this process. 
Self-Advocates continue to offer support in learning 
about these topics. What better way to learn about 
how to develop a circle of support than from someone 
who has put one together and has first-hand experience 
in dealing with the process! 
If you want to learn more and would like someone to 
come to your SA group, day-hab or residence, contact 
your local Self-Advocacy Office.

5 
New Beginning ~ Summer 2005 
Self-Determination: 
How It Came to Be In 1996 Steve Holmes and Chester Finn 
of the Self-Advocacy Association of NYS 
(SANYS) went to a conference on selfdetermination 
(SD) and brought the idea 
back to the executive committee of the 
Self-Advocacy board. The board really liked 
it and wrote a proposal to Commissioner 
Maul who said, “let’s go with it.” SA also 
received a small grant from the Robert 
Wood Johnson Foundation to start a learning 
community around self-determination. At 
that time several other states had received 
larger grants to develop self-determination 
but in New York Self-Determination began 
with Self-Advocacy. SANYS was also a key 
member of the group that wrote the National 
Declaration on SD. 
The first pilot project had mixed results. 
The second pilot, in 2000, had no funding 
and its results were not good either. We 
then began to work on what would become 
Consolidated Supports and Services (CSS). 
We worked closely with OMRDD and the 
Division of Budget (DOB). SANYS members 
met with DOB in order to answer their 
questions. SANYS believes this to be key 
in DOB’s approval for starting CSS in New 
York. 
Future Directions in 
Self-Determination 
The Self-Advocacy Association of New 
York State and OMRDD are currently 
looking at the ways other states are 
incorporating Self-Determination into their 
delivery of services. A few of the states we are 
studying include California, Connecticut, New 
Jersey, and Wisconsin. We are also looking at 
ways provider agencies can support people 
through this process. An update on this 
work will appear the next New Beginning 
newsletter scheduled for Fall of 2005. 
Should there be a specific number of people in my 
circle? 
No, a circle can be of any size, but the number of people should 
be relative to the needs of the individual. People on your circle 
should believe in your goals and dreams and be committed to 
helping you achieve them. 
How do I start? 
Tell your family, friends, staff, and Medicaid Service Coordinator 
that you are interested in Self-Determination and want to explore 
Consolidated Supports and Services. Consider meeting the Self- 
Determination Liaison at your local DDSO to figure out if you 
need a Start Up Broker. 
Do I need a Start Up Broker to access Consolidated 
Supports and Services? 
No, you don’t have to use a Start up Broker to access SD and 
Consolidated Supports and Services. You should make this 
determination with your circle of support and your service 
coordinator. 
What does Consolidated Supports & Services pay for? 
Consolidated Supports and Services covers only the things you 
need to live your life. Supports can take the form of funding for 
residential care or day staff. Services can be anything that is 
habilitative, like a gym membership or transportation. CSS will 
not pay for rent. 
Where does the money for my budget come from? 
There is no specific sum set aside for SD and CSS. Your CSS 
budget should reflect the amount of supports and services you 
need. To keep this process simple you can use the sum currently 
being spent on your services (find out the amount from your 
local DDSO). Remember that your budget will also include your 
earnings and benefits. CSS is only the part that pays for staff and 
services. 
What are the roles of circle members? 
Circle members advise you and help you on issues affecting your 
life. For instance, you might call on them for assistance and insight 
when looking for an apartment. They should be people you trust 
to give you honest feedback - sometimes the stuff we don’t want 
to hear! - and should be good at helping you find alternatives 
when dealing with issues that arise. Sometimes members come to 
just a few meetings to give the circle specific information. 
Why should I contact my SD-DDSO liaison? 
They have the information you need to help you with this process. 
Why not invite them to attend a circle meeting! 
QA& 
Some Questions 
Asked & Answered

New Beginning ~ Summer 2005 
6 
Circle of Support 
Next you would bring together your circle 
of support. A circle of support is made up 
of friends, family, staff, or others you choose, 
who believe in your goals and of whom 
you can ask advice on the decisions in your 
life. They can also help you create backup 
plans for staffing shortages and other 
emergencies. 
Once you and your circle have clear goals, 
you will create a person-centered plan. A 
start-up broker can be used to support you 
and your circle through this process. 
Self-Determination & Consolidated Supports and Services 
Person-Centered Plan 
Your person-centered plan reflects your strengths and 
preferences. This is a very involved and personal process that 
typically is completed with you and your circle. 
From your plan, you will develop a weekly schedule of supports 
and a budget for what you want to do. This is probably the 
time you will figure out if you want to do a Residential SD/CSS 
plan (RES), an Other-than-Residential SD/CSS plan (OTR), or 
both. The SD Liaison and DDSO fiscal person will assist you 
with the budget. 
Begin the Process 
To start, think about your dreams and goals: 
Where do you want to live? 
How do you want to be supported at home or during the day? 
This is a great discussion to have with your Service Coordinator, 
people who support you, and the Self-Determination Liaison at 
your local Developmental Disability Services Office (DDSO). 
Volunteering in your community may also help you in this process: community service is 
a great way to meet people, learn about jobs and have fun! 
Do I Want 
a Start-Up Broker? 
Your service coordinator and the Self- 
Determination Liaison can help you 
figure out if you want or need to hire a 
Start-Up Broker. 
A Start-Up Broker can help you pull 
together your circle of support, develop 
your person-centered plan, design your 
weekly schedule of supports, work with 
your circle and DDSO on your budget, 
and finalize the CSS application. $1200 
can be used out of your budget for up 
to one year to use a start-up broker. 
You can also set funds aside in your 
budget to have a service broker assist 
you after your plan is implemented. 
develop 
a weekly 
schedule 
of supports 
think about your 
dreams and goals NICOLE - 
plan approved 2/04 
GARI REBECKAH - 
plan approved 3/04 
LANCE - 
plan approved 1/05 
hire a 
start-up 
broker

7 
New Beginning ~ Summer 2005 
The Fiscal Intermediary 
Once your SD/CSS plan is 
approved you will work with a 
Fiscal Intermediary. The FI will do 
background checks on the staff you 
hire, pay the bills outlined in your 
budget, and pay staff based on the 
timesheets you sign. They will also 
act as the Employer of Record and 
will be responsible for sending out 
tax forms, and offer benefit packages 
to the staff you hire. You will be 
the managing employer and will be 
responsible for hiring, training, staff 
schedules, and deciding on the rate 
of pay. 
Applying for 
Consolidated 
Supports & Services 
Then you and the DDSO 
Liaison will fill out the 
Consolidated Supports and 
Services application and 
submit it for approval to the 
DDSO. Your DDSO Liaison 
will schedule a team review 
at OMRDD Central Office 
for you and your circle. 
OMRDD SD/CSS program staff and advocates 
will review your plan with you to ensure you 
have back-up plans. If your budget is equal to, 
or less than, the amount of money they spend 
on you now, they can approve it and you 
decide on the date you want to implement 
your plan. If your budget is above the DDP2 
and/or above your current amount of services 
then the plan must go to the Division Of The 
Budget (DOB) for approval. 
What Does it All Mean? 
ensure you have 
back-up plans 
Freedom 
The freedom to make life decisions and develop a personal 
life plan - a process which Self-Determination recognizes as 
ongoing and dynamic. Those whose work is commited to 
persons with disabilities can assist in this process. By knowing 
what you want to do and when you want to do it, you can 
tailor your life to fit your budget. And you have the flexibility 
to make changes when needed. 
Authority 
The authority to control a targeted amount of resources (in 
NY your CSS budget) which is administered by you and your 
circle of support. The resources are ‘portable’: they stay with 
you even as your priorities change and so you can decide 
how to be supported. The CSS budget is administered by a 
Fiscal Intermediary (FI) who pays your staff according to your 
weekly schedule and budget. The FI is also the employer of 
record handling background checks, employee tax withholding, 
and health benefits. You are the managing employer who is 
responsible for hiring, training and managing your staff. 
Support 
The support you need to accomplish personal goals. You are the 
decision-maker, but you can turn to the trusted members of 
your Circle of Support for help in various ways. For example, 
figuring out which supports you need to live responsibly in the 
community and stay healty and safe; creating back-up plans; 
assisting in interviewing, training and working with staff. 
Responsibility 
The responsibility for assuming obligations of citizenship such 
as contributing to your community and using public dollars 
wisely. You can take-on paid and volunteer work (you might 
use your supports to help seek out and keep employment); 
and you can spend money in ways that are cost-effective and 
life-enhancing. 
Self-Advocacy 
Many advocates say it takes a good self-advocate to make the 
most of CSS. Self-advocacy is about speaking up, asking for 
help when you need it and - once in a while - admitting your 
mistakes (we’re all human!) You will need to be honest with 
your Circle of Support and say when you feel they are or are 
not supporting you. Also, you may be trying new things and 
that can be scary. Ease the way by using your assertiveness 
skills to help build new friendships in your community. 
NICK - plan 
approved 2/04

For more on Self-Determination, visit the SANYS website at: www.sanys.org 
Contact the Association, or your local DDSO, at the numbers listed below. 
Help us save time and 
money. If you received 
more than one copy of 
this newsletter, or prefer 
not to be on our mailing 
list, or need to notify us 
of a new address, give us 
a call at: 518-382-1454. 
Thanks! 
PRINTER - 
INSERT 
NON-PROFIT 
INDICIIA HERE 
PLEASE 
500 Balltown Road 
Schenectady, NY 12304 
Tel: 518-382-1454 
Fax: 518-382-1594 
sanys@sanys.org 
http://www.sanys.org 
SA Self-Advocacy 
Association 
of New York State 
Self-Determination Might Be 
What You’re Looking For 1 
Self-Determination Stories: 
Dennis 1 
Cathy 2 
Larry 3 
Mandy 3 
Joey 4 
How Can I learn more about 
Self-Determination? 4 
Self-Determination - 
How It Came to Be 5 
Future Directions 
in Self-Determination 5 
Q & A: Some Questions 
Asked & Answered 5 
An Outline: 
Self-Determination 
& Consolidated Supports 
and Services 6 
What Does it All Mean? 7 
Contact Information 8 
What’s Inside: 
DDSO Contacts 
Bernard Fineson 
Cheryl Dorell (718) 217-2478 
Long Island 
Barry Seidel (631) 493-1804 
Brooklyn 
Debra Smith (718) 642-8745 
Metro NY/Bronx 
Marjorie Allen (718) 430-0371 
Broome 
Gary Naylor/ Judy Pease 
(607) 770-0255 
Metro NY/Manhattan 
Evette Herdsman (212) 229-3127 
Capital District 
Don Going (518) 370-7443 
Staten Island 
Jack Lawrence (718) 982-1944 
Central New York 
Doris Moore (315) 473-6917 
Sunmount 
Mary Borst (518) 359-2962 
Finger Lakes 
Elaine Peckham (607) 734-6135 
Taconic 
Richard Schmidt 
(845) 473-5050 x156 
David Garvin 
(845) 877-6821 x3917 
Hudson Valley 
Donna Dubreuil (845) 947-6390 
Western New York 
Nan Doyle (716) 517-2165 
Catherine Eagan (716) 517-3532 
SANYS Statewide Office: 
500 Balltown Road, Bldg 5, Schenectady, NY 12304 
Tel: (518) 382-1454 Fax: (518) 382-1594 sanys@sanys.org 
Western Region .Western (Buffalo Area) 
Tel: (716) 674-6300 x3170 
western@sanys.org 
.Finger Lakes 
(Rochester area) 
Tel: (585) 461-8776 
fingerlakes@sanys.org 
Central 
Tel: (315) 473-6927 
central@sanys.org 
Capital District/North 
Tel: (518) 382-1454 
capitaldistrict@sanys.org 
Hudson Valley 
Tel: (845) 382-1899 x120 
hudsonvalley@sanys.org 
New York City 
Tel: (212) 627-2104 
nyc@sanys.org 
Long Island 
Tel: (631) 232-0011 x505 
longisland@sanys.org 
Regional Offices 
New Beginning is produced in part with support from the NYS Developmental Disabilities Planning Council