Self-AdvocacySpring 2005
The Newsletter of the Self-Advocacy Association

Creating Partnerships for Community
For three days in late September, 2004, a group of 80 people met at a retreat in Syracuse NY. They began a process of creating a vision for the future of supports for people with developmental disabilities who receive assistance from OMRDD. The event was called “Creating Partnerships for Community”. Participants at the retreat included Commissioner Tom Maul, self-advocates, parents and family members, executive directors of provider agencies, DDSO Directors, and key management staff of OMRDD. The group focussed on the following areas: •Where do people live?
•How do people spend their days productively, including work, volunteer opportunities, and other activities of personal choice?
•How are people fully included in their communities?
The group also looked at obstacles to the goals envisioned within and without our system, ways to overcome these obstacles, as well as ways to create partnerships to make the vision a reality. The retreat was organized with a part-
nership perspective. Each Developmental Disabilities Service Offi ce (DDSO) was represented at the retreat with a team that included as partners a self-advocate, a parent, a provider Executive Director and the DDSO Director. Each team left the retreat with plans to promote the vision of the retreat within their individual DDSO through activities tailored to their specifi c areas.
The following is a general vision statement representing the numerous discussions over the three days of the retreat.
Creating Partnerships for Community Vision Statement
People with developmental disabilities will live as fully included and contributing members of their community with the supports they need to participate in typical community events, activities, organizations and associations.
People with developmental disabilities, supported by their families, friends, provider organizations and OMRDD, will live where they choose in their communities with the supports they need. A wide array of options including a variety of individualized and family supports will be available to all.
People with developmental disabilities will have a broad range of opportunities for competitive and supported employment, including intensive supports if needed, as well as opportunities for self-employment. For those who choose to volunteer in their community or pursue other interests,
individualized supports will be available for these activities.
What are your thoughts about this vision statement? Do you want to help make this vision a
reality in your area? To give feedback or to get additional information please contact the Self-Advocacy
Association, OMRDD Central Offi ce, your local DDSO and/or check out info about the retreat available on
the SA website at www.sanys.org. ¦

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My name is Rain Rippel. I am happy to announce that the Self-Advocacy Association Board of directors has elected me president once again. We have a new executive committee as well. They are as follows: Rain Rippel (president) Ricky Lane and Kelly Schultes (co vice-presidents) Tina Kreitzman (secretary), and Richard Hermanson (treasurer). The board has been very busy so far this year. In February and March, many of us gave testimony at Commissioner Maul’s seven planning forums across the state. Over 45 self-advocates spoke at the different hearings about how we want to re-
ceive supports and what we want to see OMRRD do in the coming years. In this newsletter you’ll find some parts of SA’s formal testimony as well as Joann Ripp’s and Ricki Lane’s remarks. If you want to read SA’s full testimony and some of the presentations by other self-advocates, please go to our web site at www.sanys.org.
Speaking of our website: we are committed to making better use of the it to communicate with self-advocates and our supporters, so you’ll see a lot more information on it these days. We also hope to make some very major changes to it in the coming year. At our board meetings we’ve been talking about our grass-roots efforts and how important it is to continue to support and develop self-advocacy groups. That’s where our leadership comes from; that’s how we’ve grown to be a strong organization; that’s how we represent the voice of lots of people across the state. So we’re going to be working on ways to strengthen our work with groups this year. We’re also going to spend some time clarifying a few things, like just ___
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what is an SA group and what is the difference between an SA group and an advisory council. On the next page, the SA board is happy to show you a picture of our Administrative Director, Steve Holmes, winning an award as the Developmental Disabilities Planning Council’s Community Leader of the Year. When you see Steve, give him a hug and congratulate him!
We have been meeting with some members of the Executive Directors Association (EDA) over the last few years. SA is developing some great partnership activities with this group. We are really pleased to say that the EDA developed a statement called EDA and SA, which we’ve included in this newsletter, on page 9. This statement really gets at the way we want to work with agencies. We have also participated in a number of committees involved with New York OPTS — Options for Services Through People. Like self-determination, it is a way to create the life that you want with the supports that you need. With OPTS, you can go to the agency and tell them what services or supports you want, and they will put together a proposal to OMRDD to support your goals. We’ll be doing some presentations around the state about this in the coming year.Finally, we are in the middle of planning our 2005 SA conference in Albany and there is info in this newsletter about that too. We hope you like the theme! Our focus at the conference will be “getting back to the basics of self-advocacy”. Please call me or Steve at 518-382-1454 if we can help you with anything.I love being your president!

photo 1 Board of Directors:
standing L to R - Tina Kreitzman, Kelly Schultes, Richard Hermanson; sitting L to R - Joey Perez, Ricky Lane, Rain Rippel

photo2 SA’s Administrative Director,
Steve Holmes, receives the
Community Leader of the Year Award from DDPC.
L to R: Kevin Kennedy,
George E. Fertal Sr.;
Steve Holmes,
Rose Marie Toscano

>
Self-Advocacy Association of New York State, Inc.Executive Committee¦ Rain Rippel, President (Capital Region) ¦ Kelly Schultes, Co-Vice President (Finger Lakes)¦ Ricky Lane, Co-Vice President (LI) ¦ Tina Kreitzman, Secretary (NYC)¦ Richard Hermanson, Treasurer (Western) ¦ Joey Perez, Immediate Past President (Long Island)Board of Directors¦ Long Island: Meryl Jackelow; Joann Ripp; ¦ NYC: Michael Rappaport; Ramon Aldecoa
¦ Hudson Valley: Rosemary Gravanese; Sharon Hager; Stephen Muller; ¦ Capital Region & North: Judy O’Connell; Melissa Rose; ¦ Central: David Liscomb; Lisa Obrist; Yolanda Zehr
¦ Western: Larenz Pickens;

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2004 Self-Advocacy Association Conference Awards
The Self-Advocacy Association
of New York State, Inc.
proudly recognizes:
Wishes and Dreams Self-Advocacy Group of the Year
Gilbert Plaza Self-Advocate of the Year
Melissa Nilsen Self-Advocacy Group Advisor of the Year
Central New York DDSO Agency of the Year 
Lockport Community TV Self-Advocacy Media Award
Beth Mount “Thanks for helping us get the life we want” Award
Bernard Carabelloas our Founding Father For his great work in starting the Self-Advocacy Association of New York State, Inc.
Tom McCluskey For his work and commitment bringing dignity to people who are in a state of perpetual anonymity in cemeteries
throughout New York State.

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The Conference in Pictures - a page of un captioned photos from the conference
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Speaking UPSpeaking OUT
In the past few months, self-advocates have had two great opportunities to speak out about the things we want to see improved in the system and the supports we receive. The first was at the OMRDD’s 5-Year Plan Hearings that were held in several areas of the state. Over forty-five self-advocates gave testimony, including Ricky Lane and Joann Ripp whose
speeches are on the next page. SA’s Board of Directors presented a response that included five
important ideas or policy changes. We believe these ideas will put some energy in to the areas of the five-year plan we are most concerned with. Below is the full version of the first recommendation. The others are listed here, but please go to our website - www.sanys.org - to read more.1. Use all new sources of funds for individualized supports.All new funds available to OMRDD, including funds from NY State CARES II and New York OPTS, will be utilized to support non-traditional, person-controlled living and day supports, without exception. No new buildings or group services will be developed unless specifically requested by individuals and their families; and individuals and their families will control any homes or buildings developed through these funds. For people desiring traditional living arrangements and who are on waiting lists, we believe they should be supported in moving to currently operated homes and apartments. They would fill vacancies that come about when individuals who opt for individualized services move out. This is the only way we will really begin to change our system.The other four suggestions are:
¦ Develop an Advisory Think Tank on Individualized Supports
¦ Develop an Advisory Panel to provide periodic visits to Developmental Centers
and Specialized Units
¦ Create a Statewide and Regional Community Participation Task Force
¦ Address the cost of Housing in many areas of NYThe second is speaking up with our Legislative Platform (see our website: www.sanys.org) which begins with the vision statement found on Page 1 of this newsletter. It has been sent to New York State legislators and, in February, we visited eight legislators in Albany. Why not copy our platform from the website and use it as a guide when you visit your local legislator?In all, the platform focuses on six areas:
Medicaid
Individualized supports and self-determination
Transportation
Making Day and Employment Supports in New York State work for us!
Voting and Accessibility
Continuing to recognize the importance of Direct Support staffIf you don’t have access to the internet and/or want us to send you either of these documents or any other information about SA, call us at 518-382-1454 and we will send the material to you.

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Good afternoon.
My name is Ricky Lane, 
and I am the Co-Vice President of the Self-Advocacy Association of New York State. On behalf of the Board of Directors of Self-Advocacy I would like to thank you, Commissioner Maul, for all your support of Self-Advocacy over the years. Self-Advocates are very proud of the partnership we have developed with OMRDD. We think the Syracuse retreat was really important and a good example of how we work together. We created a vision statement for the future of services.
Commissioner Maul, we like a lot about the plan you and your staff have put together, especially the parts about individual services, self-
determination, community participation and, of course, working with Self-Advocacy.
I am happy to tell you that I recently accomplished one of my goals, moving from a large group-home to an apartment with one other person. I love it. I hope many other people like me will have a chance to get their own place or a job they need and want. I also want to mention that the DDSO helps self-advocacy a lot and we appreciate it. Barry Siedel is very supportive and so is the Director, Jill McGinn. She makes sure we have transportation to many of our activities including trips to Albany. Joe the driver is a good man and a friend to us all.
Thank you again for all your support.

Good afternoon.
My name is Joann Ripp 
and I am a board member of the Self-Advocacy Association of New York State. I attended the Syracuse Retreat with my fellow board-members and many people from across the state. We spent a few days talking about how things should be for self-advocates and their families. The Self-
Advocacy board has made the statement that comes from the retreat our theme for the coming years.
I am very lucky. I have always had the support of my parents, family and friends. I have been a self-advocate for a long time too. I live in my own condo and hire the people who help me. I am controlling my own life and that’s the way I like it. I have a part-time job and I’m on a lot of committees. I go to Curves and other places where I meet a lot of people in my community.
Like me, many of my self-advocate friends want a home, a job and friends in their community. That’s what OMRDD’s plan should be about it. I think it is!
I appreciate all that I have and all the support I get. Thank you very much.

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So You’re Thinking of Becoming an Advisor...
Beverly Kaufman

photo 1 Beverly Kaufman (seated) with Board Member Sharon Hager

When I fi rst became an advisor to the Speakout self-advocacy group in the Hud-
son Valley about 14 years ago, I had little or no idea what was expected of me. The self-advocacy movement was relatively new, as was the concept of people with disabilities speaking up for themselves. But I quickly learned that being an advisor to a self-advocacy group is one of the best ways to get to know people with disabilities on a real person-to-person level, heart-
to-heart level. I also saw that professional roles and diagnoses are often barriers that prevent people from really getting to know each other. Fortunately, in a self-advocacy group diagnoses and titles are irrelevant.
In our group people truly needed to talk, and I learned to listen. Many of our members had spent more than half of their lives in institutions and they needed our group to bear witness to their stories, to acknowledge that what they had lived through was real. One person would tell their story and then another, stories that were often painful and sad to tell, but stories that were an incredible testament to the strength of their spirit. For many people, this was the fi rst time that they had had the opportunity to talk about their past, the fi rst time that they were seen as people who had a past. The self-advocates in our group also talked about the important people in their lives and what their hopes and goals were. As an advisor, I developed enormous respect for their courage and integrity and had the opportunity to see and redefine issues from the perspective of self-advocates.
But what does an advisor actually do? First, advisors don’t have to work alone. I have been fortunate to be a co-advisor, fi rst with Ann Hardi-
man who initially helped to organize Speakout and, for the last 12 years, with Tom McCluskey. Together, we have assisted the group in setting ground rules that make it easier for the group to run smoothly and also that make it more likely that all the members will feel valued. Although the offi cers run the meeting, we are there as a resource to clarify issues, provide additional sup-
port to individual members, and to facilitate if the group gets stuck on an issue. There is a fi ne line between providing support and taking con-
trol, and hopefully over the years I have become more skilled at learning the difference and at speaking only when my input is needed and will be helpful.
We have also helped members of our group to organize activities that will help them to change and improve their own lives. Self-advo-
cates from Speakout have been part of several task forces, including one on self-determination and accessible transportation. Other members have taken part in public forums, town meetings, and radio shows, and have spoken at local colleges and civic organizations. As advisors, we have provided transportation and helped to plan and make presentations with self-advocates. In our region, we have helped to organize confer-
ences with self-advocates, discuss regional issues and have had the opportunity to make connec-
tions and meet many new people. Along the way, we have great fun, treat each other with respect and are proud to be part of the Self-Advocacy movement. So, if you are thinking of becoming an advisor, don’t wait. Do it now! Your life will be enriched more than you can imagine. ¦


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This statement is great - we commend the Executive Directors Association (EDA) for
supporting self-advocacy! Meetings we’ve had with NYSARC Chapter Executive
Directors looking for ways to partner with their organizations have lead to some neat focus groups at our conferences, productive meetings with our board, and eventually to this statement. Still, we wish to make one thing clear: There is a difference between self-advocacy councils or advisory organizations,
and a self-advocacy group. For SA, a self-advocacy group is independent: even if it receives support
from an agency, it elects its own officers, creates it’s own agenda, and is free and expected to express opinions about the services members receive from provider agencies. Thank you EDA!The Board of Directors of SA.

resolution :
EDA and Self-AdvocacyThe Executive Directors' Association (EDA) is comprised of the Executive Directors from the forty-nine community Chapters of NYSARC, Inc. The following is a list of position and belief statements that are
held by the EDA relative to self-advocacy.? Self-advocacy is presently a best practice in promoting the values and the mission of Chapters of NYSARC, Inc. We support increased participation by people with developmental disabilities on boards of directors, advisory boards, and board committees. We support the training of these individuals to participate fully and meaningfully with these various groups.? People with developmental disabilities should receive reasonable supports and accommodations to serve on boards and committees.? Individuals with developmental disabilities should have direct input into Chapter management planning and decision-making. We support the involvement and participation of people with developmental disabilities on management advisory groups.? Individuals with developmental disabilities can assist organizations through either paid or
volunteer positions in promoting the development of self-advocacy programs and supports.? Agencies should provide financial and administrative support for self-advocacy activities
including participation at self-advocacy meetings.? Individuals with developmental disabilities and self-advocacy groups should be able to affiliate with county, state, and national groups as they choose and Chapter resources should be made available, where possible, to assist and promote the formation of local chapters of self-advocacy groups or associations as initiated by people with developmental disabilities.? It is important that there is full and meaningful participation by people with developmental
disabilities in Chapter and community life.? There should be a partnership between people who receive supports, administrators, and agency personnel to reduce barriers to independence and individualization for people with disabilities.Furthermore:? We support the use of People-First language and that people are recognized as individuals rather than as consumers, participants or clients.? We will provide support and resources to our colleagues and in conjunction with people with
developmental disabilities in the area of best and promising practices as they relate to
self-advocacy.? We support increased public education about self-advocacy and will work toward the sharing of self-advocacy success stories with the media. March 15, 2005

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SA opens up a can of… Change! SA Statewide Conference at the Albany Marriott,
September 8, 9, 10, 2005 — Save These Dates!

We are busily planning our annual conference
for September, 8, 9, and 10, 2005. First, we want to tell you a little bit about the logo (we hope you like it) and theme for the conference. When we were brainstorming
a conference title, the most popular at first was “SA Opens up a can of ‘whoopass’”. Some of us felt that that this theme captured some of the impatience many of us have with system change in that options like self-determination
take so much time to make happen. But, in the end, the alternative slogan about ‘opening up a can of change’ was the winner. We realized that is what we’re really trying to do: change things. And we’re
doing it with dialogue and participation.
But we’re telling you about “whoopass” because it’s important that every one know we are serious about our advocacy
and many people do not have the patience to wait for opportunities. Now to some details about the conference: First of all, because of a lot of comments we’ve had about crowding, our board has decided to limit the number of people who attend. Last year we had over 730 people registered and the Marriott is just not big enough to comfortably support such a large group with diverse needs. We think 600 people will be a better size group for us. That’s the good news. The bad news is that a six hundred-person conference means that not everyone
who wants to attend will be able to. It also means we’ll have less registration money and our budget will be a little tighter - but we’ll still have a great conference and a good time, as always. In past years, we have raised funds to provide a number of $50 scholarships to help people attend the conference. Over the years, many people - mostly those not supported by agencies - who need staff support or aide services, have asked if we could help with some of the costs of their support staff to attend the conference. This year we are going to try to help with this request. We’ve decided not to give out scholarships but to use the funds we raise to help pay for support staff instead. Watch for more information about this in the conference flyer.Registration Materials: these will be sent out in early-June and we’ll expect them back no later than August 7th. That’s three weeks earlier than past conferences. So watch for the mail in early-June!Accessible rooms: once again we have booked all the accessible rooms at the Marriott and we’ll give them out based on need. This has helped us accommodate many more people the last few

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years. There will be information about this in the packet that comes out in June.Our board has spent a lot of time thinking about SA’s goals for the coming year. We are also beginning
to plan for our 20th anniversary in 2006. One thing the board has decided is that we have to do more to make sure we continue to support and develop self-advocacy groups. Therefore, the focus of the conference, the keynote, the focus groups, and lots of the workshops, will be about getting back to basics, back to our roots, back to what makes us a strong organization.So, we are looking for workshop proposals that focus on the back-to-basics idea: how to support groups, group leadership, regional activities, and SA projects and activities at local and regional levels. If you would like to submit a proposal, please call Steve Holmes at 518-382-1454, or send an email to seholmes@earthlink.net, or send a brief letter to Steve at the SA Office. He’ll help you put your presentation proposal together for the committee review.We can’t wait to see you in September!
SA Board of Directors

SA UpdatesAs you can see from our newsletter there is, as always, a lot happening in our organization. This newsletter also has a new format because we have hired someone to help us with our design, desktop publishing and other communications. We want to welcome Jane Rimmer, who is working part-time out of our Schenectady Office on self-advocacy communications. Jane will work with Steve Holmes, Rain Rippel and a board committee to help design our newsletters and brochures and flyers. She’ll also help out with the development of our website.Just as we hope to get back to basics at our conference in the fall we’re going to get back to basics and the grassroots of organization in the coming year. Starting with this newsletter, we will be overhauling all of the communications you receive from SA and looking for new ways to use the internet and our website to inform self-advocates and all our supporters about the work we’re doing.Speaking of design, next year will be our
twentieth year of operation and we are looking to develop a new look and new logo for SA. Watch for an announcement about a logo contest coming soon. We need your ideas for a logo that represents what SA is all about.We also intend to develop a new monthly E-zine, which is an email magazine, that will keep everyone up to date with our activities. If you would like to receive news about SA through your email, please send your email
address to seholmes@earthlink.netFinally, we’re making a commitment to
getting our newsletter out more often. What’s not in this newsletter are updates about all of our projects including AmeriCorps Speakers Bureau, Self-Determination, Real Choice and our regional activities. There will be updates available on all these projects and activities in June on our website, www.sanys.org, and in our next newsletter which we’ll mail in June or early-July. If you want any information about SA and what we’re about, call our state office or one of our regional offices. You’ll find the numbers on the back page.Oh, and if you haven’t had a chance to send us your 2005 Membership application and
donation, it’s not too late! Give us a call at 518-382-1454 and we’ll send you some
membership info.Thanks. SA Board

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What's inside
¦ Creating Partnerships for Community 1¦ President’s Corner 2-3¦ 2004 SANYS Conference Awards 4-5¦ Speaking Up, Speaking Out 6-7¦ So You’re Thinking of Becoming
an Advisor - by Beverly Kaufman 8¦ Statement: The EDA & Self-Advocacy 9¦ SA Opens Up a Can of... Change:
SANYS 2005 Conference 10-11¦ Contents; Coming Up; Contact Info 12

Coming up
May 26:
Hudson Valley ConferenceJune 2 & 3:
Buffalo ConferenceJune 17:
NYC ConferenceCentral Region
Dinner-DanceJune 21:
Capital District ConferenceSeptember 8, 9, 10:
State-wide Conference

contact information:Capital Region/Statewide:
(518) 382-1454 or
1-866-42-SHARE
Fax: (518) 382-1594Hudson Valley:
(845) 382-1899 Ext. 120Western Region:
(716) 674-6300 Ext. 3170
Fax: (716) 517-3458Finger Lakes:
(585) 461-8776
Fax: (585) 461-8733New York City:
(212) 627-2104
Fax: (212) 229-3183Long Island:
(631) 232-0011 Ext. 505
Fax: (631) 232-4422Central Region:
(315) 473-5085