Self-Advocacy December 2005 Page 1/Front Cover The Newsletter of the Self-Advocacy Association of New York State At our 2005 Annual State Conference we really “opened up a can of... change!” (Go to www.sanys.org for more pictures!) Season’s Greetings & Happy New Year. By the way, 2006 is SA’s 20th Anniversary! Self-Advocacy News December 2005 Page 2 Presidents Corner Hi everyone, First of all, I want to say how much I have enjoyed being President of the SA Association for the last two years. I have learned a lot and have really enjoyed meeting so many of you. My term has ended and the SA Board will be electing new officers at the December board meeting. One thing that I’m really happy about is that I will become the Immediate Past President and that means I will still be involved with all the good work we are doing across the state. Speaking of changes, sadly our board must say goodbye to a number of people who have served you well as board members. We wish to thank the following whose terms ended as of September 30th, 2006: Meryl Jackelow and Ricky Lane (Long Island), Tina Krietzman and Joey Perez (NYC), Rosemary Gravenese (Hudson Valley), and Richard Hermanson (Western). It was a real pleasure for me to work with Ricky, Tina, Joey and Richard on the executive committee. We will miss you all! It is also my pleasure to inform you that the following were elected as new members this year and will join our very active group: Rosalind Adler and Shaun Nitz (Long Island), Melissa Rose (Capital District), Michelle Touche (NYC), and Tyrone Barnes (Western). This year’s conference was really terrific with so many great workshops and presentations. We really ‘opened up a can of... change’ for a few days. The band Flame was fantastic – people were dancing up a storm! Our presentations about individualized services were great and very important. Helping people to create the life they want will continue to be a big part of SA’s work. I am proud to announce that we raised $300 at the Conference to support self-advocates from New Orleans who lost their homes during Hurricane Katrina. We all have to stick together, especially in time of crisis. In September several of us attended a conference in Washington DC called the “Alliance for Full Participation”. This was a key national gathering of organizations supporting people with developmental disabilities, including our national group “Self-Advocates Becoming Empowered”. We were there as part of the NY State team. The conference focused on leadership, selfdetermination, community participation, and the future of Medicaid. You can find out more on the Alliance’s website: www.allianceforfullparticipation.org. You can read about our State team’s goals on SA’s website: www.sanys.org There are lots of interesting things for you to read in this newsletter, including some important changes that our board is proposing for our by-laws (see p.4). We need your feedback. Our goal is to strengthen our grassroots by solidifying and clarifying our work with self-advocacy groups. Please send any questions or comments to Steve Holmes at the SA Statewide office. I want thank you all for your support during my term as president. I look forward to working with the board again this year as Immediate Past President. Sincerely, Rain Rippel 2005-2006 SA Board of Directors Rain Ripple: Immediate Past-President; Shawn Nitz , Joann Ripp , Rosalind Adler: Long Island; Michael Rappaport , Michelle Teutsch, Ramon Aldecoa: New York City; Jessica Granger, Stephen Muller, Sharon Hagar: Hudson Valley; Judy O’Connell , Melissa Rose: Capital District/Northern; David Liscomb,Yolanda Zehr, Lisa Obrist: Central; Kelly Schultes, Tyrone Barnes, Larenz Pickens: Western Advisors Steve Klein: Capital District/Northern Robin Erb: Long Island Dan Flanigan: Central Beverly Kaufman: Hudson Valley Ann Hardiman, Chester Finn, Bonnie Shoultz: Statewide Steve Holmes: Administrative Director Self-Advocacy News, December 2005, Page 3 The cold and rain on Saturday, October 22 did not deter members of Hudson Valley self-advocacy groups from heading out to Wassaic and Letchworth Developmental Centers in New York to participate in ‘Make a Difference Day’ – a day dedicated to restoring the dignity of people buried in unnamed graves in the cemeteries there. Up until the mid-seventies, people with developmental disabilities who lived in institutions and who did not have family burial plots were buried in unnamed graves on the grounds of institutions. At that time, names were withheld due to laws and concerns about confidentiality. There are several groups seeking ways to restore the dignity of those buried in these unnamed graves. One example is the 1033 Group – self-advocates and supporters who came together with the mission of memorializing each person buried on the grounds of Wassaic and other institutions in New York State. The group’s name was taken from one of the first grave-markers excavated and made visible – which was numbered ‘1033’. At the recent gathering at Wassaic, some sixty people were present at one of the two cemeteries located near the institution. In a very moving ceremony, Commissioner Tom Maul, SA’s President Rain Rippel, and members of the 1033 Group read aloud the names of those buried there. At Letchworth, a group of twenty people held a similar service at the cemetery located near the grounds of the former institution. Commissioner Maul took this opportunity to announce his support for the placement of plaques at all cemeteries on the grounds of institutions in New York State, plaques that would note the name, and the date of birth and death, of each individual buried there. In the coming year, OMRDD, SA, the 1033 Group and others will work on plans to memorialize the lives of all individuals buried in unnamed graves in at least nine such cemeteries in New York. Please call Steve Holmes at the SA Statewide office if you are interested in helping to work on a memorial in your area. Go to www.sanys.org for more information and photos. (caption for photo) Rain Rippel, SA’s Board President, shares some welcoming remarks with those gathered at the cemetary in Wassaic just prior to the reading of the names of those buried in unmamed graves. Inset: The excavated 1033 grave marker Names, Not Numbers You've Got OPTionS What is your dream? What do you want to do with your life? Where do you want to live? What type of work or other activities are you interested in? How do you want to be involved in your community? These are important questions for everyone of course, but for those who need or receive support services through agencies funded by OMRDD the news is—you’ve got a new option. One of the main goals of SA is to increase the opportunities we all have for individualized, person-centered supports. In the past year, OMRDD has developed a new way for people to receive support services from provider agencies. It’s called OPTS. What OPTS does is change the way agencies and organizations provide services. There are a number of guiding principles for OPTS but the first one, and the one that has to be part of every proposal, is: Maximize opportunities for individual choice through person-centered services. This means that supports provided through OPTS have to be based on your dreams, your goals, and what you want in life. Commissioner Maul describes OPTS as a way of supporting people differently, based on what people want, with a focus on people’s satisfaction with the supports they receive. At this point, close to two-hundred OPTS proposals have been submitted, over fifty approved and twenty-three are actually Continued on page 8 Self-Advocacy News, December 2005, Page 4 Strengthening Our Grassroots: Some Proposed SA By-Law Changes Self-Advocates everywhere have done their job and spread the word about speaking up and getting the lives we want. As a result, the Self-Advocacy Association of NYS (SA) is growing by leaps and bounds. As our organization grows, it’s good to stop and think about the way we do things. When our board reviewed our growth as an organization, one thing became clear: we need to stay focused on the grassroots of SA, teaching about self-advocacy and starting and supporting groups. The following proposed by-law changes will help to do just that by ensuring we have board representatives from all parts of the state and additional representatives in New York City, and by putting more emphasis on strong groups and grassroots leadership. A by-law is a rule a group uses to govern itself. Board changes SA is broken up into six regions. Right now there are three board members for each of the six regions of New York State plus the immediate past president. The regions are: Long Island, NYC, Hudson Valley, Capital District/North, Central and Western. New suggested by-laws have been drawn up. The board considered the following things when deciding on the changes: ¦ population of the region ¦ size of the region ¦ location of key regional State offices such as DDSOs: we want one board member for each DDSO Based on our research, these are the proposed changes (please see a full and detailed explanation at our website): ¦ NYC: 5 (one for each borough) ¦ Long Island: 2 (one for Nassau County and one for Suffolk County) ¦ Western: 3 (one for the Western area (Buffalo), one for the Finger Lakes and one for the Southern Tier) ¦ Central: 2 (one each for the Syracuse and Broome DDSO areas) ¦ Capital: 3 (one for the Sunmount area, two for the Capital District/North region) ¦ Hudson Valley: 3 (one for the Taconic DDSO area and two for the Hudson Valley DDSO area, including one for Westchester County due to it’s large population) County realignment ¦ Jefferson County, which is in the Sunmount DDSO area, would become part of the Capital District/North Region. ¦ Cayuga County, which is in the Syracuse DDSO area, would become part of the Central Region. ¦ Thomkins and Tioga Counties, which are in the Broome DDSO area, would also become part of the Central region. The difference between Self-Advocacy Groups and Advisory Councils There’s a lot of confusion about the difference between self-advocacy groups and advisory councils, so let’s clarify: ¦ Self-advocacy groups are formed and controlled by self-advocates themselves, and function independently of agencies. ¦ Advisory Councils are formed by agencies to seek input and advice about the supports the organization offers. This is a good thing: agencies need to get feedback and involve people in decision-making – that is part of self- advocacy too. Self-Advocacy News, December 2005, Page 5 The SA Board proposes the following by-law changes to clarify what SA considers to be a SA self-advocacy group: ¦Groups elect their leaders — president and vice-president, etc.. ¦ Groups choose their own advisor(s). ¦ Groups develop their own agenda and activities. They participate in regional and state SA activities (even if only one person goes to the regional meeting, conference, etc.). ¦ The main purpose of the group is self-advocacy activities. ¦ If affiliated with an agency, the group remains independent of that agency and of the way that agency functions. These groups would not be SA groups unless they also have the above listed elements. ¦Groups maintain membership records and a list of current officers with SA’s main office. Proposed additional criteria & qualifications to be a member of the SA Board ¦ One year in a leadership role (officer) of an SA group , and a recommendation from the group. ¦ Available to travel to four board meetings. ¦ Willing to speak for self and others including in public (at meetings, etc.). ¦ Available to attend regional meetings. ¦ Commitment to activities within the region he or she represents. ¦ Have a developmental disability. (Grassroots flow chart) The structure of SANYS ‘from the ground up’: individuals come together to form groups; groups affiliate with regions; board members ‘filter-up’ from the grassroots level Self-Advocacy News, December 2005, Page 6 Speakers Bureau The Speakers Bureau of the Self-Advocacy Association has been active around the state giving presentations to community organizations, putting emphasis on a message of community participation and inclusion. Here are a few examples of speaker bureau members’ activities: ¦ In May, Speakers Bureau members Clint Perrin and Darren De Luca delivered a presentation to the Graduate Association of Political Science at the State University of New York’s Albany campus. Presenters fielded questions from students and faculty, which led to an interesting and informative exchange. ¦ At the 2005 Conference on Inclusive Schools and Communities for Children and Youth, Mitch Levitz and Scott Fowler presented ‘Building Partnerships for the Future’. They promoted the inclusion of students with developmental disabilities. ¦ The members of the Speaker’s Bureau in New York City have also completed the first in a series of thirty-minute documentaries for the Manhattan Neighborhood Network cable access channel. The documentary, made with the assistance of CIDNY, deals with the access issues that prevent or discourage people with disabilities from voting at the polls. In one week, speakers may address the upper level management of an agency, five-year old children, and self-advocates working towards better lives and better communities. This reflects the broad but common Self-advocacy Project Updates message of community inclusion delivered by the Self- Advocacy Speakers Bureau. Presentations are available for: provider agency administration, staff and boards of directors, government officials and legislatures, faith communities, community service boards and local planning councils, members of the general community and students with and without disabilities. If you are interested in, or know of others who may be interested in, scheduling a presentation please see the box of contact names and numbers on page 7.¦ (Captions for photos) Left: Michael Cardella doing a Speakers Bureau presentation; on the screen is a picture of Michael and fellow Speakers Bureau member, Sujeet Desai, from the Central region. Below: Clint Perrin discusses Self-Determination at an inclusion retreat in the Adirondacks. Self-Advocacy News, December 2005, Page 7 SA/AmeriCorps In October SA started its 8th year of AmeriCorps. This year there are teams in Long Island, New York City, the Capital District, the Broome area, Watertown, Rochester and Buffalo. The main focus of AmeriCorps continues to be ‘Our Experience is the Best Teacher’ presentations for staff of agencies and students with and without disabilities in schools. AmeriCorps members also speak to self-advocacy groups and community organizations. The purpose of AmeriCorps presentations is to promote the importance of self-advocacy, bring general awareness of disability issues and, like the Speaker’s Bureau, reinforce the importance of people with developmental disabilities participating in the community. To schedule an AmeriCorps presentation, see the contact box on this page.¦ Self-Determination in New York State People are really starting to create their own supports and lives through self-determination and Consolidated Supports and Services (CSS). Over 60 people are already using CSS! There are many more folks who are putting their plans together and are well on the way to having an approved plan. For some, selfdetermination has totally changed their lives. For others it means having control over the staff that support them and managing their budget of supports and services with their Circle. Self-advocacy continues to play a key role in working out all the details of the selfdetermination pilot. Self-advocates are involved in all the planning meetings and policy discussions with staff of OMRDD. Over the past year we have made presentations about the opportunities offered by self-determination. Each DDSO has sponsored a training for advocates, families and providers to learn more about CSS, as well as offering more trainings for Start-Up Brokers. In addition, self-advocates put together their own training tools to teach other advocates about all the elements of Self-Determination using CSS. This coming year SA will be updating training materials and helping to clarify the role of Circles, the Medicaid Service Coordinator, Fiscal Intermediary, and Providers. Updated information on Self-Determination and CSS and a Start-Up Broker Directory can be found on the Self-Advocacy website at www.sanys.org. See the first issue of the selfdetermination newsletter, ‘New Beginnings,’ for lots of good information and some stories of people who are changing their lives. ¦ If you would like to schedule a Speakers Bureau or AmeriCorps presentation, or would like more information about our projects, please call us. Capital/Northern Pat McBride: (518) 382-1454 Hudson Valley Daniel Borgia: (518) 382-1454 New York City Kate Buncher: (212) 627-2104 Western Sophia Roberts: (716) 674-6300 x3170 Rochester & Central Lyn Zyla: (585) 461-8776 Long Island Robin Erb: (631) 493-3222 (Caption for photo) Robert Klein and Tom Techman man the AmeriCorps booth at the Amsterdam Latin Fest in August Self-Advocacy News, December 2005, Page 8 (Continued from You've Got Options on page 3) supporting people today. Many more are starting up soon. A number of the proposals involve organizations sitting down with people living in group homes or participating in day services and asking the important questions about what they want. Then the organizations work with them to create a new home, or to develop new work options or other daytime activities. For example, the Rennselaer ARC conducted a number of meetings with people living in a group home and their families. Through the use of personcentered planning techniques they helped people to decide what type of living situation they wanted and where and who they wanted to live with. Over time this process evolved into an OPTS project for twenty people who will live in 11 separate and very individualized homes and apartments. That means twenty people living the life they want – the life they helped to create – with the supports they need and have asked for. This is what OPTS is meant to be. So do you have a dream? Do you want to change the supports you currently receive from an organization? Here’s where your self-advocacy skills become important. Speak-up for yourself! Talk to your service coordinator or your family and friends about what you want. Talk to the staff of the agency that supports you. Tell them you’ve got OPTionS and start creating the life you want. For more information on OPTS, go to www.nysopts.com or SA’s web site at www.sanys.org; or call one of our SA offices and we’ll help you get started.¦ In Memorium: Ethel Pacht Harvey Pacht gave the following eulogy at Ethel Pacht’s funeral service in Brooklyn on November 4th. Many of Ethel’s family and friends were present. On Wednesday November 2nd, 2005 the world lost a very special person. Her name was Ethel Pacht; she was my wife for over 23 years. She was very instrumental in advocating for a better quality of life for people with disabilities. For example, she helped to start our selfadvocacy organization. Ethel was a true friend and champion to people with disabilities. Ethel and I, her husband Harvey Pacht, were pioneers in pursuing adoption at a time when it was not common for people with disabilities to adopt children. It was something incredible because, whoever thought people with disabilities could raise children? We had to overcome many obstacles before we could reach our goal. Ethel was a very loving and caring person. I fell in love with her because she was a very nice person and I wanted to have a relationship with her. She made me feel happy. I remember our first Thanksgiving after we met. I introduced Ethel to my mother and sister. We drove from the Bronx to Brooklyn to attend a dinner. It was the first Thanksgiving of our relationship. I got to meet one of Ethel’s brothers and his family. It felt very good. I met her other brother later on. As in every marriage, life was not always easy for us. Like all couples we went through our good times and bad times. But nevertheless we still stuck together because of our love and devotion towards each other. Today we are here to celebrate her life and honor her achievements. She will be missed by all of us. I, Harvey, her surviving spouse and our daughter Samantha, are going to continue to live our lives to the fullest extent possible. This is what Ethel would have wanted us to do.¦ Self-Advocacy News, December 2005, Page 9 On September 9, 2005, Richard Hermanson, co- vice president of SA, George Suess, executive director of Delaware ARC, and Jim Wilson, executive director of the Arc of Schuyler County, met with about thirty selfadvocates at the SANYS Conference. They talked about how self-advocates and agency leaders could work together to help people problem-solve. The results of the conversation were a series of tips that everyone decided should be shared. These tips can be the basis for discussions between local selfadvocacy groups and agency leaders. PROBLEM SOLVING TIPS What works for you? ¦ Keep trying - don’t take no for an answer. Try, try again and say ‘thank you’ when someone helps ¦ Be patient – it may take time to get the problem solved ¦ Think about solutions ¦ Speak up for yourself ¦ Help each other ¦ Use the chain of command (lots of discussion identifying the chain) ¦ Use your family members, advocates or friends to help you speak up ¦ Get your facts together- get the details ¦ Have a positive attitude ¦ Present your own solution(s) ¦ Use your Medicaid Service Coordinator ¦ If you get angry, walk away until you calm down What’s hard about problem solving? ¦ Fear of speaking up, being put down, not being taken seriously, being made fun of, angering staff ¦ Might get into trouble with staff ¦ Why bother trying? – I’ve done it before and it didn’t work. (Remember: results take time) ¦ Staff might hold it against me at the house and take away privileges ¦ May be unsure of who to talk to Problem-Solving With Executive Directors From L to R: Richard Hermanson, George Suess, and Jim Wilson run a problem-solving brainstroming session at the SANYS Annual State Conference in September What would you like us, as Executive Directors, to say to other Executive Directors about problem solving? ¦ Have an open door policy ¦ Don’t allow bullying or threatening behavior by either staff or others that I live with ¦ Listen to both sides of the issue ¦ Don’t let other people in the home hurt us ¦ Hire us ¦ Have us on boards of directors and board committees ¦ Take us seriously ¦ Learn about new options (OPTS/self-determination, etc.) Self-Advocacy News, December 2005, Page 10 The Self-Advocacy Association of New York State, Inc. proudly recognizes: Awards 2005 Self-Advocacy Association Conference Seaway Industries Advisory Council Self-Advocacy Group of the Year Nominees: The Advisory Board People Helping People Rochester ARC & Self-Advocacy Group Self-Advocacy 2 People Inc. Agency of the Year Nominees: Heritage Centers Orange County ARC Rochester NYSARC Kristina Krawchuk: Capital 9 News Self-Advocacy Media Award Nominees: Monica Moshenko Disability News & Views Radio Show Cathy Van Laar Self-Advocate of the Year Nominees: Dora Becker Cindy Colavita Charles Degraffenreid Becky Ellsworth Russell Johnson Tina Kreitzman Sean Simms Kate Yool Yolanda Zehr Denise Ranaghan Self-Advocacy Advisor of the Year Nominees: Ron Kurtz Amy Upham Pat Willis John Kelly For his many years of service to Self-Advocacy Commissioner Tom Maul ‘Thanks For Helping Us Get The Life We Want’ Award Self-Advocacy News, December 2005, Page 11 For generous support of the 2005 Annual Conference Souvenir Journal, SANYS gratefully acknowleges: ‘SA Opens Up a Can of Change’ pages: Family Residences and Essential Enterprises; Rensselaer ARC; Central New York DDSO; Dutchess ARC; Crystal Run Village; Northeast Career Planning ‘Speaking for Ourselves’ pages: New York State Developmental Disabilities Planning Council; Westchester Arc; United Cerebral Palsy of Suffolk; NYSACRA; Delaware Co. ARC ‘Don’t Just Say It, Do It!’ pages: Enable; Heritage Centers; Executive Directors Association of NYSARC; Developmental Disabilities Institute; Schenectady ARC; CP Rochester ‘Our Voices Count’ pages Occupations, Inc.; New Horizons Resources; Job Path; Saratoga ARC; Massachusetts Advocates Standing Strong; Orange County AHRC; Adults and Children With Learning & Developmental Disabilities (ACLD); Community Living & Advocacy Supports, Inc.; Life’s WORC; Cerebral Palsy Association of the North Country; The Arc of Schuyler County; AHRC Nassau; The Self-Advocacy Group of Southeast Bronx Neighborhood Centers, Inc.; Lifestyles for the Disabled; Aspire of WNY; The Irwin Siegel Agency; NYSARC; Catholic Charities Disabilities Services; Living Resources; Prospect Child & Family Center; Madison-Courtland ARC; Jefferson Rehabilitation Center; Cerebral Palsy Associations of New York State; Liberty ‘Nothing About Us Without Us’ page Ulster-Greene ARC; Tom Ott, Amy Bittinger, Marriette Bates; Walk the talk page; Cantalician Center for Learning; The Center on Human Policy; Norman & Kay Nogaj. Medicare Part D - Prescription Drug Coverage: What You Need to Know! If you have Medicare and Medicaid, the new Medicare Part D drug coverage will replace your Medicaid drug coverage on January 1, 2006. Medicaid drug coverage will end for you on this date. You will be assigned to a “Prescription Drug Plan” (PDP) by Medicare and enrolled in a subsidy. By November 15 a notice will be mailed telling you the plan you have been enrolled in. It is important that you check your mail for notices about Medicare Part D coverage and discuss this with your Medicaid Service Coordinator and people who help with your benefits and medicine. Not all of the Prescription Drug Plans will carry all medicines; you need to see if your plan has the medicines you need. If not, you can switch plans. Your new plan will start the beginning of the next month. The formulary, a list of drugs each plan covers, will be announced on November 15 and your plan should send you a copy. Information for other plans will be available on each company’s website or by request. The Prescription Drug Plan Finder at www.medicare.gov lets you enter in the name of the medications you take and recommends the plans that carry your medicines. If you don’t use the Internet, get the same information by calling 1-800-MEDICARE . Also check your pharmacy to make sure they accept your plan. What you should do ¦ Check your mail for notices about Medicare Part D ¦ Speak with your MSC or benefits person and give them notice ¦ Check your plan’s formulary for your medicines after November 15 ¦ Ask your pharmacy if they accept this plan ¦ Change plans if needed, talk with your MSC or benefits person ¦ Have a supply of medicine in case of problems on January 1, 2006 Check www.sanys.org to learn more about Medicare Part D.¦ Thank you! ¦ President’s Corner 2 ¦ Names, Not Numbers: Cemetary Project Update 3 ¦ You’ve Got OPTionS 3 ¦ Proposed By-law Changes 4-5 ¦ SA Project Updates 6 ¦ Eulogy for Ethel Pacht 8 ¦ Problem-Solving With Executive Directors 9 ¦ 2005 Annual State Conference 10-11 ¦ Medicare Part D - What You Need to Know 11 Page 12/Back Cover what’s inside: contact information: 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) 493-3222 longisland@sanys.org 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! NON-PROFIT ORG US POSTAGE PAID SCHENECTADY, NY PERMIT #11 SA Self-Advocacy Association of New York State 500 Balltown Road Schenectady, NY 12304 518-382-1454 sanys@sanys.org http://www.sanys.org SA Loses a Great Leader and Friend Ethel Pacht, a great self-advocate leader, founding member of SA, AmeriCorps member, wife of Harvey Pacht, mother of Samantha, and a friend to us all, passed away on November 2nd 2005. We will miss her. Please read Harvey Pacht’s eulogy for Ethel on page 8 FLASH: Board Elections The following poeple were elected as officers at the December 2005 board meeting: President: Kelly Schultes Co-Vice President: David Liscomb Co-Vice President: Michael Rappaport Secretary: Joann Ripp Treasurer: Larenz Pickens Immediate Past President: Rain Rippel