CREATING PARTNERSHIPS FOR THE COMMUNITY NYS SELF-ADVOCACY ASSOCIATION/ OMRDD LEADERSHIP RETREAT 2 Table of Contents Creating Partnerships for Community Vision Statement 3 Summary of Retreat Newsprint 4,5,6&7 NYS Self-Advocacy Association 8 Central Office Leadership Team (COLT) 9 Preliminary Team Plans: Bernard Fineson DDSO 10 Brooklyn DDSO 11&12 Broome DDSO 13 Capital District DDSO 14 Central NY DDSO 15 Finger Lakes DDSO 16 Hudson Valley DDSO 17&18 Long Island DDSO 19&20 Metro NY DDSO 21 Staten Island DDSO 22 Sunmount DDSO 23&24 Taconic DDSO 25 Western NY DDSO 26 Retreat Participants Evaluation Feedback 27 Likes/Dislikes/Suggestions 28,29&30 3 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 OMRD, 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 selfemployment. For those who choose to volunteer in their community or pursue other interests, individualized supports will be available for these activities. 4 SUMMARY OF RETREAT NEWSPRINT CREATING PARTNERSHIPS FOR THE COMMUNITY OMRDD/NYS Self-Advocacy Association Retreat September 27-29, 2004 The following represents a compilation of deliberation results as retreat members reflected upon the following question: “Consider the year 2025: What should our “system” look like then? What would people’s lives be like in these dimensions? Where Do People Live? • Homes will be supported by the DSO as equal partners. • Homes will be smaller (more supervised/supported apartments), and owned by consumers. • People will be supported by the DSO, and home agencies will be more independent. • People will have options they can choose and control based on choice and ability rather than deficits. • Self-Advocates will feel free to speak up for themselves and will be taken more seriously. • People can live together as couples. • Elderly, medically frail, etc. will have necessary supports in their own homes (i.e., nursing services). • Enhanced options will exist for the elderly, and they will control services. In-residence day programs will be available for retirees. • There will be more service options for those who are not “independent” or “totally dependent.” • Children will live with parents/families. • Everyone will have the accommodations they need to facilitate independence. How do People Spend Their Days Productively, Including Work, Volunteering, Activities, and Personal Choice? • People with disabilities will work in the field. • People will own their own businesses. • People will be exploring their own interests. • Working people will work without losing pre-existing benefits and will have increased access to typical job benefits (i.e., time off, medical insurance, etc.). • People will have more control over their own finances (make their own trips to the bank, grocery stores, medical appointments, etc.). • People are productive in their own homes (learning new skills rather than watching television). 5 Summary of Retreat Newsprint – continued from Page 4 • There will be increased options for those wishing to retire. • There will be more Day Hab Without Walls programs. • Programs will exist for high school students as they prepare to transition beyond school. • People will make better use of technology. • “Connected Productivity” will be based on choice and will encompass employment; volunteering; retirement; and educational, recreational, and spiritual, etc. opportunities. How Are People Fully Included in Their Communities? • They are the people you see regularly in the community with typical jobs. • They are treated as a person, not as a disability • They participate in community organizations. • Communities will have universal access. • There will be a change in language, with an end to all labels. • The need for specialized groups (i.e., Special Olympics) will decrease as people are increasingly integrated. • People will work with the media about its messages relative to people with disabilities. • There will be enhanced transportation/mobility services. What are the Barriers and Obstacles to Achieving the Vision? • System resources • Limited imaginations • Medical model • Fear of change • Lack of individualization • Competition for funds • Lack of training and career opportunities • Inability to navigate the system • Inability to reflect the needs of all people in our programs • Lack of a sense of the “urgency” of change • Need for happy, fulfilled workforce with decrease in turnover rates • Uncertainty (e.g., future of Medicaid as an entitlement program) • The “gateway” to existing Medicaid services is the need/eligibility for institutional care • Attempts to refocus services to “ability” may be counterproductive in maintaining funding ties to disability. • In seeking partnerships, there is a risk that a partner may diminish us instead of rising to our level. • Education system is unfamiliar with what awaits children with disabilities after school. • Liability issues/insurance 6 Summary of Retreat Newsprint – continued from Page 5 • Limitation on income/earnings (effect on benefit/funding stream eligibility) • Agencies in competition with one another • Self-determination is very complicated; need to stop holding people to the “process” • People are not allowed to “fail” • Civil Service system is barrier to self-advocates who want jobs • Individualized services may threaten existing “programs” • Lack of nursing supports for aging, medically frail What are the Solutions and Opportunities to Achieving the Vision? • Financial incentives: federally funded housing set-asides; private industry; revision of labor laws • Emphasize life experiences rather than civil service scores for hiring • Sufficient service capacity and choice without delays • Flexibility of service providers • Access to information and service choices • Communication network for providers/consumers via selfadvocacy • Opportunity for spirituality and self-expression • Community involvement with non-paid persons • Teach self-confidence • Access to the federal system • Best practices for service coordinators to eliminate excessive paperwork • Change from disability-based funding to universal long-term care • Start life planning earlier (i.e., primary grades); 21 is too late • Revisit self-determination practices; streamline approval process • Create more individual opportunities • Make training available to direct-care staff and people receiving services • “Habilitate” a wider variety of resources (i.e., transportation) so agencies can bill larger variety of sources • Identify alternate funding sources • Agencies to provide staff incentives r/t creating individualized situations • Earlier education in self-advocacy • Bring more stakeholders to the table (i.e., legislature, DOB) to increase funding flexibility • Self-advocates more visible to legislators 7 Summary of Retreat Newsprint – continued from Page 6 What Ways Could/Should Partnerships Contribute to Achieving the Vision? • Explore partnerships with entities beyond our system and parallel systems (e.g., churches, civic groups, etc.) that naturally might embrace inclusion • Explore partnerships with business community • Partnership between service system and self-advocates should be strengthened • Self-advocates could establish/strengthen partnerships with systems outside OMRDD (e.g., education) • Build cooperative arrangements with transportation constituencies toward sharing significant existing resources • Community involvement is needed as a support • Fund agencies that support vision • Explore crisis prevention team • Partnership among self-advocates, parents, providers, etc. to help build community • Social skills training (e.g., diversity, sensitivity training) • State college and Dept. of Labor to assist with development of workforce • Training about choices available to families and individuals • Self-advocates helping others to learn the skills of self-advocacy • Partnerships among service recipients and legislators, congress members, community services boards, local housing authorities, chambers of commerce, independent living centers, boards of education, etc. 8 NYS Self Advocacy Association Leaders from SA met last night to discuss some possible ways we, as an organization, could help support the vision that we are all creating at this retreat, and support all your district team efforts. The first thing we decided is that we need to approach this with a long-term commitment, so we are calling our efforts the Partnership for Community Campaign. We believe this can be a way that we organize most of the activities of Self-Advocacy. Here are some things we want to start doing with all of our partners as soon as possible. Share the Vision • Create a joint report with OMRDD about the retreat that includes the visions, obstacles and solutions we’ve discussed. We also want to include some of the personal stories we heard as well as some personal comments about people’s experiences at this retreat. We will share this report with everyone involved in our work. • Write newsletter articles for provider, parent groups, and other organizations for inclusion in their newsletters and web sites communications. • Write a press release for widespread distribution throughout the state talking about our shared vision and our plans. • Make a simple video about the retreat and what we are trying to accomplish. • Use our speakers’ bureau efforts to help spread the word about this campaign, including presentations for people in OMRDD’s Central Office and other government agencies, such as the Commission on Quality Care, the Developmental Disabilities planning council, and the Office of the Advocate, the legislature, and other key community organizations throughout the state. • Create presentations for statewide conferences like NYSACRA • Share our work nationally Activate the Vision • Increase SA’s partnerships efforts with parent and provider groups such as Parent to Parent, NYSACRA, the State ARC, and the Executive Directors Association. • Work with the Commissioner and all of you to develop at least five key policy directions and actions that demonstrate for all the commitment we all have to vision we are creating. While we have a long-term vision for the future we want to create a sense of urgency in moving forward with this vision. • Work closely with agencies supporting people who are underserved and/or from diverse cultural communities. • Find ways to address some of the Federal issues we’ve identified as obstacles. • Provide whatever support we can to the work of the local DDSO teams. So you can see, the Self-Advocacy Association is energized by the work we have done together the last couple of days. Thank you all for your energy, commitment and your vision. We know that “together we can create a better tomorrow.” We also know that: “if you can dream it, you can do it!” 9 Central Office Leadership Team OMRDD, together with the Self-advocacy of New York State (SANYS), will create a Community Participation Task Force which will be designed to encourage community inclusion at the grassroots level and foster partnerships and participation in meeting the goal of true and meaningful inclusion in community life for persons with developmental disabilities. Among the active participants in the Community Participation Task Force will be individuals who took part in the most recent retreat in Syracuse. As illustrated in Central Office's lighthearted presentation depicting who will replace senior staff some time in the future, OMRDD envisions even greater participation by consumers in our everyday operations as we go forward in the new millennium. The agency remains committed to working with SANYS and other consumer and family organizations as well as with the nonprofit provider community to assure that the focus of OMRDD's supports and services will closely reflect the personal choices of individuals who are served through the system. 10 Bernard Fineson DDSO In the year 2025, we envision that the system will evolve and expand the use of GIS and computers in general. The DDSO will become similar to a super “Stop and Shop” whereby a family will contact the DDSO and will be able to determine the availability of existing services through the GIS system. The team felt that the guiding principles of NYS CARES and OPTS should incorporate the following: • Improve the use of the portability of funding that will allow for increased and improved opportunities • Encourage the development of more accessible facilities and downsize large residential facilities • Develop incentives for agencies to provide innovative services • There is a need to educate and share information with some of the state’s control agencies so that they have a better understanding of our needs and services In the next 3-5 years, the team would like to work on the following initiatives: • Encourage the establishment of new initiatives for education for those out in the world of work • Encourage the development of drop-in centers as an anchor in the community for a place to socialize • Strive to change attitudes through inclusive education by way of a speakers’ bureau focusing on individual accomplishments in the community and stressing the positive contributions made to the community • Develop a system of teaming up teenagers (currently in Board of Education programs) with seasoned self-advocates, similar to a Big Brothers/Big Sisters format, to assist with transition to adulthood • Develop a second generation group of self-advocates through a mentor program as they move from their teens into adulthood • Encourage the establishment of programs of “connected productivity” based on choices that cover all aspects of a person’s life (vocational, recreational, spiritual) 11 Brooklyn DDSO Overview of the Next Steps Assignment for the Brooklyn Team of the Self- Advocacy Leadership Retreat: On September 27-29, 2004, Commissioner Thomas Maul hosted the second Self-Advocacy Leadership conference in Syracuse, New York. In attendance were the heads of all OMRDD Central Office Administrative Operations and the directors of all DDSOs. Each DDSO was represented by a team that included the director, a consumer, a parent, and an executive director of a provider agency. Brooklyn’s team was comprised of Peter Uschakow, Leigh Braxton Parent, Towana, consumer, and Lorenzo Brown, Executive Director of Heavens Hands Community Services. One of the challenges assigned to all of the teams at the retreat was to identify systemic impediments that stand in the way of Self-Advocate’s efforts of asserting their desired level of independence. The challenge: The Brooklyn team identified inadequacies and of public transportation as the primary impediment that if resolved, would vastly increase access to services, resources, opportunities for socialization, recreation and strengthen connection for persons with disabilities with the family and the community at large. Our approach to resolving the challenge: The Brooklyn team decided that we had to find a way to hold government responsible for providing quality services to individuals with disabilities. We felt that the poor access and lack of services effect not only persons with developmental disabilities but also seniors with mobility challenges, persons with temporary disabilities and parents who travel with children. With this many individuals representing all social, economic, age and race being affected by this one issue, the DD community would not have to shoulder the issue alone. The Brooklyn team decided that we would invite members for the MTA, Access-A-Ride and legislature responsible for Transportation and Infrastructure to discuss a) the challenges faced by persons with disabilities b) the cities failure to meet their needs, and c) the negative impact that the lack of access is having on the lives of people with disabilities 12 Brooklyn DDSO – continued from Page 11 Next Steps: • Elicit the support of the Brooklyn and other DD councils; • Document the systemic impediments (e.g. a day in the life of a person traveling with a physical disability; camera footage, photos interview, etc.); • Identify the responsible government agencies; • Invite responsible agencies to a meeting to share our concerns; elicit their suggestions to remedy the problems; • Insist that “Government” establish time limited responses to addressing the challenges presented by the council; • Establish liaison between D community and major government transportation agencies. 13 Broome DDSO In the next 3-5 years, the Consumer Advisory Council will open Self- Advocate Offices in each county. Executive Directors and DDSO management will encourage boards to increase Self-Advocate presence on boards and operational committees. Self-Advocates will host meetings with elected officials to apprise them of their initiatives. Self-Advocates will increase participation in local civic activities. DDSO team will partner with NYS SA Association to develop an internship training program to ensure success of Self-Advocates. Speakers Bureau will be incorporated in training for other SA and for agency staff by the DDSO team. Self-Advocates will be a presence on committees that coordinate county transportation systems. SAs will be part of the selection and interview process. The DDSO team would benefit from adding business, education, and government partners. The number of SAs will increase by 500%. The Partnership activities to be undertaken include Consumer Advisory Council partnering with Voluntary Agencies and the DDSO to have retreats for similar persons, including board members available. 14 Capital District DDSO Information Sharing 1. Take the information from the Education sub-committee of the Commissioner Advisory Council and review it. Develop a plan of action to involve schools across the district in partnerships. Review all current contracts for transitional services to adult options between the schools in the district with the voluntary providers and develop an action plan to expand to other schools and agencies. 2. Assess level of participation of individuals on local government boards, voluntary agencies and DDSO. Develop a work plan in concert with interested agencies which includes the involvement of individuals in policy development and participation on decision making boards. Increase Participation Expand the pool of potential participants available in each agency by accessing the training. Cultivate existing boards through conversations with the district team. New Options Review the extent to which individuals reach the age of retirement and may want to explore leisure activities. Suggest creative ways to fund these choices. Additional Team Members Additional individuals who are special conversant in specific areas of expertise, as needed, i.e. special educations, issues of aging, etc. Over the next year under the direction of the district coordinating council, a similar county based committee will be developed to encourage the ideas of the partnership of this retreat. Partnership Activities Using the best practice of Rensselaer County we will encourage partnership with Local Mental Health, county government and county health department. 15 Central New York DDSO Develop support for SA activities as an OPTS program. Brief SAs at Nov. 13th Forum on the results of the retreat. Utilize the Forum to engage in regional brainstorming to flesh out a regional plan for all. Develop a program for parents and teenagers as “partners” in learning how self-advocacy skills can help them with transition to independence. Expand the retreat core group to include others in the region. Ensure diverse representation by geography, program affiliation, and multicultural aspects. Explore technological approaches to connecting SAs with each other: video conference, web-based, and other techniques. Build on the successful “Power of Our Voices” video by producing a sequel that gives specific examples of how agencies can engage SAs. Offer the technical assistance and support of regional SAs to agencies who want to move forward. Develop an ongoing series of informative and instructional presentations on individualized services that shows real outcomes and provides “how to” advice. Use multimedia including videos, CD-ROM, and Web. Regional SAs will have a table at the Oct. 14 “Community Information Forum” in Syracuse. Engage in multi-strategy approaches to break down misconceptions or limited thinking about flexible ways to provide individualized services. These could include: -Web-based system of FAQs and Best Practices that are available to view. -Find ways to achieve flexibility in constructing rates so blended activities (e.g. “matching”) can be done within documentation and billing rules. -Establish ways and means to encourage agencies to take flexibility and creativity paths that are currently available to us. Develop consumer satisfaction models for Res. Hab. Base these on the successful consumer survey and satisfaction techniques used in FSS. Get SAs allied with others in this undertaking. Combine the survey process with on-site visits and training approaches to enhance individualized, flexible services and supports. 16 Finger Lakes DDSO FLDDSO SANYS/OMRDD Leadership Retreat Team “aka, Dream Team” will pursue the following objective with the FLDDSO Leadership Group, Voluntary Agency Director and Self Advocacy partners: .. Meet with the Director of FLDDSO and key potential partners in the process, i.e. Americorp, Self Advocate Advisor to the Director, etc. to share the vision from the retreat and to begin the process to develop a comprehensive plan to encourage and promote Self-Advocacy within the district. .. Meet with the FLDDSO “Self-Advocacy Consulting Committee” chairpersons of individual agency-wide Self-Advocacy committees to share the vision from the retreat and to solicit input into the district plan. .. Arrange and coordinate an Information Best Practices “Sharing Day” forum to provide an opportunity for all voluntary; and Stateoperated agencies and Self-Advocacy groups and partners to learn about Self-Advocacy initiative and networking possibilities and sharing the “vision” from the retreat. It is hoped; that this forum will build support and expectation that the Self-Advocacy movement will be sponsored and will flourish within the Voluntary and State-operated program. .. Facilitate the development of an informational sharing system to include a newsletter and the establishment of a formal communications network and partnership between and among the leadership and self-advocacy groups. 17 Hudson Valley DDSO What Specific Activities Do We Want To Undertake… We were already committed to a series of activities in the immediate future. Dinner with the Director (10/5). We have had periodic sessions with selfadvocates and the director, but those sessions have been with our state Operations S/A groups. This dinner will include groups from the voluntary sector. Project 1033 (Letchworth cemeteries) initiative scheduled for 10/24. Changing Attitudes Self-Advocates already participate orientation, supervisory training, and MSC core courses. We were adding opportunities for S/A to contribute to our direct support/professional development curriculum, and to offer presentations to school transition coalitions. All of these opportunities need to be developed more broadly across the district (some agencies are currently more involved than others). Some specific opportunities for additional involvement include: .. Connecting the speakers’ bureau with the existing puppeteer programs. .. Developing an off-site self-advocacy center at WIHD. The real shock for our district team came in the apparent disconnect between the retreat’s vision of moving away from certified group settings to non-certified, consumer controlled options, and the IRA’s being developed under NYS-CARES. (That disconnect between vision and current development may simply be a reflection of who contributed to the development of the Retreat’s vision). We propose to “increase the self-advocacy presence in the planning and implementation of service designs” by: .. Using S/A trained through the Real Choice initiative to advise/mentor individuals and families in the NYS-CARES and NYSOPTS (downsizing) processes. .. Ensuring participation by self-advocates in the County-based planning processes (MR/DD) work group, MR/DD sub-committee, etc., and development of County Plans). 18 Hudson Valley DDSO – continued from Page 17 .. Once a program became operational, there would be opportunities for self-advocates (perhaps partnering with parents) to conduct periodic customer satisfaction reviews/surveys. These opportunities would be available within the NYS-CARES and NYSOPTS programs. To move in those directions, we felt that we need to add others to our district team. .. County DMH Representative .. Direct Support Representative .. MSC Representation .. School Transition Specialist (BOCES) 19 Long Island DDSO Consider the year 2025: What should our “system” look like then? What would people’s lives be like in these dimensions? Overall Vision: .. Have resources connected to the person, not the program. .. More individualized services .. More choice and control over services .. Real portability of funding .. Increased self-advocacy presence in the planning and implementing of services .. Services created around people’s capacities, not deficiencies. .. Changing attitudes through increased education .. Access to transportation Where Do People Live? .. Live wherever you want, with whomever you choose, and with whatever supports are needed. .. Adequate, affordable, accessible housing .. Individual control of housing, financing, supports .. Personal and financial supports should be driven by the individual’ s choice .. Housing choices that are flexible to responding needs How Do People Spend Their Days Productively? .. Increased support to have more consumers working in the field (both in the DDSO’s and in not-for profit agencies) .. Create work based on individual values and choice .. “Connected Productivity” based on choice, not a program, including not just employment but volunteer, retirement, educational, recreational, and spiritual opportunities. .. Careers, not jobs. 20 Long Island DDSO –continued from Page 19 How Are People Fully Included in Their Communities? .. Increased education for general public .. Accessible health care .. More advanced technology that allows people to identify and acquire supports .. Being connected; living, working, taking courses, recreating with individual supports .. Increased opportunities for socialization. Individual services shou7ld not promote loneliness. .. Education programs in communities, schools, business, and government. .. Mandated training for professional development. .. Partnerships with the media to increase awareness. Long Island Self-Advocacy District Goals • Conference entitled: “Don’t Give Up” by and for individuals with disabilities on 11/6/04 on Long Island • Potential recruitment of second DDSO staff member to be designated exclusively for self advocacy • Develop a NYS OPTS proposal to establish self advocacy efforts throughout Long Island • Start a self advocacy club – a fully integrated club-as a pilotmaybe at a BOCES • Design/implement a consumer satisfaction survey to be completed at all levels by self-advocates • Establish a web site for self-advocacy on Long Island • Outreach to civic and other organizations to raise self-advocacy awareness • Flush out cutting edge technology assistance to allow for maximum independence of self-advocates 21 Metro NY DDSO Implement 5 goals set by this retreat: 1) The presence of self-advocates on the DDSO Board of Visitors in the Bronx and Manhattan. 2) Increase employment opportunities for self-advocates at the DDSO and New York State services. 3) Hold a mini retreat with executive directors of private agencies using the theme and ideas developed at this Syracuse retreat. 4) Reach out to groups that advocate for generic housing and transportation. 5) Engage in meaningful dialogue with Access-A-Ride to improve services. 22 Staten Island DDSO Self-Advocacy Six-Month Work Plan 1. Within 6 months, the Staten Island Developmental Disabilities Council (SIDDC) will establish, for the first time, a Self-Advocacy Committee. The committee’s members will be Self-Advocates. DDSO and Agency support will be sought to fund a stipend for a Committee Chairperson. The committee will, of course, establish its own agenda, but of immediate concern will be: a) Soliciting membership b) Disseminating information about Self-Advocacy c) Acting as a resource for existing and emerging Self- Advocacy activities throughout Staten Island 2. Within 6 months, SIDDSO and the SIDDC will work with the newly established Self-Advocacy Committee to work with the preexisting residential life focus group (people with developmental disabilities) on points a) and b), above. It is expected that the many ideas already coming from this group will contribute to the Self-Advocacy Committee’s agenda. 3. Within 6 months, the Self-Advocacy Association of New York State’s Speakers’ Bureau will be brought to Staten Island to support and add to the initiatives, above. 4. SIDDSO will request funds in this year’s spending plan to annualize support for Self-Advocacy activities in the district. 5. Within 6 months, each SIDDSO cabinet member will develop recommendations regarding the involvement of Self-Advocates in ongoing SIDDSO activities. 23 Sunmount DDSO Looking at the vision for the future and the various barriers/obstacles and solutions identified in the various groups, what do we now need to do at the district level? What can be accomplished in 3-5 years? Encourage 6 local government units to include self-advocacy on: .. MRDD Sub-committees .. Community Service Board .. Planning boards/committee .. As active participants Involve all 20 provider agencies in self-advocacy: .. Break down the barriers .. Training .. Exposure Self-Advocacy offices spread out in district: .. Franklin/Hamilton .. St. Lawrence/Jefferson .. Clinton/Essex (i.e., DDSO provides space, local government unit some money, voluntary agencies some staff supports). .. Link with Americore Speakers Advocates Link Self-Advocacy with other ongoing initiatives and community partnerships Stress person first language -i.e. Parent to Parent 5/05, building community partnerships -Can-Am Exchanges-spread self-advocacy across the border -PTA meetings -CSE Chair, training outreach meetings, Self-Advocacy becomes a part of presentations Self-Advocates do presentations for all 6 county Board of Legislators and the St. Regis Mohawk Tribal Council Self-Advocates in conjunction with providers involved with “get out the vote efforts” 24 Sunmount DDSO – continued from Page 23 Self-Advocates presentations to school groups Self-Advocates as mentors to people who want to become Self-Advocates and non-DD people mentoring DD Self-Advocates Better Marketing – PSAs, Community Education Who needs to be added to District Team? CSE, Chair Person, representatives EIP, Staff representatives County Public Health representatives Self-Advocacy representatives from all six counties and the Tribe Independent Living Centers BOCES VESID MSC representative by invitation by Self-Advocacy College-Class/volunteers linked with self-advocates Parent-to-Parent Who to Partner with? Engage actively with the Media-PSAs NYS Parks & Recreation and DEC -Regarding accessibility issues and recreation ILCs – Independent Living Centers Hospital Ethics Committees -Self-Advocacy membership-what an added perspective it would bring Fort Drum -Federal funds -Many volunteers DDPC-Grants/RFPs Futures, General No more new large residences A Plan to be developed for people in large existing residences to move to smaller opportunities if they choose Look at creating a local network where Self-Advocates can explore different options, i.e. supported work or competitive work People accessing the wilderness could be a major self-advocacy initiative 25 Taconic DDSO Goals: 1. Update District website “DDconnections. ORG” Send letters to transition coordinators, MSC’s, and advising groups to send update information to Regis Obijiski. 2. Put together welcome packet with appropriate forms information contacts for parents and new consumers-include self-advocacy material in packet. 3. Create self-advocate internships at DDSO community sites. 4. Invite self-advocate to Board of Visitor Meetings. 5. Encourage provider agencies to include self-advocacy information in their consumer and staff orientation programs. 6. Encourage self-advocacy groups to address one aspect of selfadvocacy training at each of their regularly scheduled meetings. 7. Expand the apprenticeship program for direct care staff that will begin this fall at New Horizon’s to several agencies within the district. 26 Western NY DDSO 3-5 Year Partnership Goals: 1. 20 not-for-profit agencies will have SAs on their Board of Directors and the DDSO will have a SA member of the Board of Visitors. 2. 20 agencies will have paid SA Coordinators on staff while OMRDD will develop funding streams to support SA activities. 3. SAANYS/DDAWNY/DDSO will develop partnerships with Erie Community college and Niagara County Community College to develop 2-year Associates degree programs to increase opportunities for people with disabilities in direct care positions. 4. SAANYS will partner with the Niagara Frontier Transportation Authority and the various County Boards of Elections to educate these boards on transportation needs and the voting power of Self-Advocates. 5. Self-Advocates will make presentations on SA to 50 schools each year in Western NY. 27 Creating Partnerships for the Community September 27 – 29, 2004 The Marx, Syracuse, NY Evaluation Part 1: The Content Please let us know how you feel about the program. Yes No Did you like the retreat? 62 Did you like the go-around sharing of personal stories about the impact of self-advocacy on Monday evening? 60 Did you like the vision exercise on Tuesday morning? 60 2 Did you like the activating the vision session on Tuesday afternoon? 56 5 Did you like the partnership session on Tuesday evening? 59 1 Did you like the district teams reporting session on Wednesday morning? 50 1 Did you like the length of the retreat? 58 2 Did you like the retreat format of breakouts and reporting sessions? 57 5 Did you like the handouts? 59 1 Will the retreat information be useful to you? 62 Part 2: The Environment Please let us know how you feel about the hotel environment. Yes No Did you like the meeting rooms? 55 5 Were you able to see and hear the speakers? 59 1 Did you like the hotel rooms? 58 2 Did you like the meals? 58 2 Part 3: Suggestions 1. Which part of the retreat did you like the most? See attached. 2. Which part of the retreat did you like the least? See attached. ________________________________________________________________ 3. General comments/suggestions for future activities. See attached. ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ Name (optional) ________________________________________________________________ 28 1. Which part of the retreat did you like the most? All of it – activities – welcome and introductions – listening to personal stories, looking at building partnerships, exploring empowerment, looking to the future; laughing, learning, living – the envisioning-getting together with the participants as a district team and people from across the state – networking among DDSO self-advocates-Information and the opportunity to meet retreat participants – Beginning of retreat was very energizing/over all very positive – the chance to meet new people and get acquainted with old friends – the personal stories – the chance to network – Structure to accomplish items in long and short term – Monday night’s sessions – camaraderie/ partnerships/ friendships – meeting and dining accommodations were excellent; liked meeting self advocates and others from other areas – different events, very informative – getting to work with my team – identification of barriers and resolutions – meeting other individuals from other parts of the state, - I enjoyed the personal stories about the impact of self-advocacy – listening to personal stories and sharing of what is important to consumers – information in reference to transportation – Monday night – all – I thought it was well rounded – the go-arounds for all the ideas that were generated – The first night sharing of personal stories was very moving and energizing…It stayed with one throughout the retreat – the sharing of stories…especially self-advocates – broad cross section of participants, having the opportunity to get together with other selfadvocates – how people were able to share and voice their thoughts – the vision exercise – the mix of people and the changing groupings was excellent – the interaction with the people – personal stories and meeting people from across the state – the go-around session where we shared stories – the self-advocates presentation – meeting new people – broad representation of people with a stake in self-advocacy – the sharing of stories, just the opportunity to know that someone is looking to make the future better – hearing everybody – personal stories – hear others talk – I found everything very interesting – everything – listening to people’s stories, - break out sessions and the full participation of Central Office – It had to be the best meeting/retreat I have attended in my 30 years of working in the field – It was an inspiration to do greater things in the field – hotel rooms and the speakers – everything – the sharing of personal stories – creating strategic objectives for the district; interacting with so many wonderful people – meeting the self- advocates and sitting with them at meals – the interaction between all participants – the group sessions were extremely interesting and surprisingly productive, given the time constraints – discussion breakouts – the thing I gained most is I now know my district’s parent, who I’ve known for years as a person not “Mark’s Mom,” – Well organized, informative. Great job! 29 Likes/Dislikes/Suggestions – continued from Page 28 2. Which part of the retreat did you like the least? The ending – the banquet (the food was not good) – It was hard to hear people speak in the large room during the breakouts – long hours – being in the same windowless room for so long – insufficient seating – all interesting – the meeting room was a little cold – some presentations were too long – the fact that is was my first experience – enjoyed all parts – in room long time – go-around intros – getting up early – some of the speeches could have been briefer – It was all good – too many breakouts – want more time with the whole group; - the schedule was a little too rigorous – could have been two days rather than three – Tuesday PM session got off into other areas/did not focus – there was nothing that I didn’t like – staying in one room for the bulk of the retreat – everything was good – format needs to be varied by second day – the Tuesday evening partnership session – I learned something from every situation. 3. General Comments/Suggestions for Future Activities Follow-up will be all important – more women – Recording personal stories (with permission) – the hotel was very accommodating…we also had fun along with work – If possible smaller meeting rooms for breakfast sessions…one large room becomes a burden – more self-advocates reporting from their districts – Build on the successes, strengths, partnerships we have (don’t throw out the baby with the bath water) we have a good system that can be better…working together – Tuesday AM session needs work – pre-retreat homework was excellent and should continue – should have more forums in the future, I think this forum was even better than the Lake Placid retreat – Excellent start – Transportation is a big issue that needs more attention – The evaluation tool does not address the abilities of the facilitators, some were better than others – There should be more discussion of how Central can support the DDSO teams in bringing the agenda back to other voluntary agencies – Thank you – Would like additional handouts with summaries from every group, from every session – The 20-year visioning exercise would have been more effective if it were followed by 3-5 year objectives for the service system…this retreat was well organized and extremely important to the heart and soul of supports for people with developmental disabilities – The building should have automatic doors! The hotel was beautiful! – Perhaps each person could write down a personal approach to a particular goal or issue – More self-advocate groups come – great opportunity to share ideas and learn about what is going on across the state – Invite “outsiders” (e.g. local government officials, business people, health care professionals) to next retreat…the retreat energized me and reminded me of why I love my job – I was happy to be able to talk with the Commissioner directly and for his help ion solving “the shower problem.” Thank you – Continue to meet using the DDSO 30 Likes/Dislikes/Suggestions – continued from Page 29 specific goals and objectives as a guide – Hearing about how people achieved their individual successes is very inspiring…more of these kinds of exercises would be great…I don’t know how this would be accomplished, but exposing more people from outside the OMRDD system to the self-advocacy movement would be very productive – I know that this was a very long program but I would stick with this same format. It helped to bring together the different participants and stay focused – More legislative involvement; more involvement of County CSB and Subcommittees; involve private sector employees – The use of retreats to brainstorm and share ideas among all the major stakeholders should definitely be continued…it’s energizing and helps set the visions in motion…having a specific agenda was particularly helpful and kept the work focused – I felt honored to be here, learned a lot and look forward to putting some of our ideas into action – Stories, stories, stories – I listened and learned…the knowledge and energy in the room was tremendous – Love to do it again! – Legislative representation – I was very pleased to be able to have people from different areas of NY meet. It gave this country mouse a chance to hear what is happening and what changes the “city mice” have in store…though we are from very different lifestyles, the concerns seem to be very similar – Well organized, stayed on schedule…I feel that we should report in a year on implementation of our goals – Everything was great, the only suggestion is to have better refreshments, would like to have soda option – Thanks particularly to Syracuse DDSO for assistance with details, it mattered…rotate location to down state…have an “action plan” format to walk away with – More actions – I’d like to see members from the community (1 from each district) be included – If there was a way to consolidate information…to via word…so that people could visually see the overlaps – Well organized, informative. Great job!