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Office of Mental Retardation and Developmental Disabilities (OMRDD) Commissioner Tom Maul opened the meeting by pointing out that he changed the seating arrangements for people around the table so that "we all get to know one another better". Commissioner Maul spoke about the three questions from the last meeting. He wants the state agencies to begin implementing projects as the MISCC is doing the planning. The three questions discussed at the last meeting were: 1. What data elements need to be collected in addition to those listed in the MIS Law? 2. What are the goals of the Council? 3. Projects that state agencies can work on? Some Council members have still not submitted their list of data that should be included in the plan. Commissioner Maul wants to collect all of the responses and discuss them at the next meeting. Some Council members still have not turned in their goals. Again, this topic was deferred to the next meeting. Office of Alcoholism and Substance Abuse Services (OASAS): OASAS is working in collaboration with OMRDD to prepare people who have developmental disabilities and drug/alcohol issues for employment. The people served by this collaboration are already in OASAS outpatient programs. Four phases of the project: · Develop the model · Pilot in selected sites (upstate and downstate) · Modification phase · Statewide implementation OASAS reports that 2,000-3,000 people in NYS have drug/alcohol problems and a co-occurring developmental disability. Commissioner Maul asked: What is a valid measure of success? He suggested that it should be individual and not based on mass numbers (i.e. success should not be defined by the number of people who obtained employment). OASAS is also working in collaboration with OMH. OASAS reported that the two agencies have a long history of collaboration. The goal of this collaboration is to better identify and treat people with alcohol or drug dependency and co-occurring mental illness. The guiding principle of this collaboration is that "integration of services is a local responsibility". The Council then discussed how to measure success of any collaboration. Kathy Kuhmerker suggested a consumer satisfaction survey. Neal Lane from SOFA advised that SOFA is in the 4th year of a federal demonstration program on performance outcome measures. Neal will share the form they use with Commissioner Maul. A representative from OMH suggested that the Council develop a minimum data set that would cross over all of the projects. Harvey Rosenthal advised that one of the most successful ways to get data on consumer satisfaction is to use peer administered surveys that contain open-ended questions. Brian McClane (SED) advised that the Council must take into consideration economics and funding to sustain the projects that we create. Pat Fratangelo suggested doing a facilitated planning session with a group of consumers. Commissioner Maul stated that he wants a "disinterested party" (someone who doesn't work at a state agency) from the Council to work on the consumer satisfaction process. Office of Mental Health (OMH): OMH reported on its collaboration with State Education Department (SED). Sharon Carpinello passed out a sheet with the "Collaboration Goals" on one side and a fact sheet on the other side. The purpose of the collaboration is to promote employment for individuals with mental illness. Harvey Rosenthal suggested that they expand the collaboration to include the Department of Health (DOH) and the Department of Labor (DOL). Commissioner Maul then mentioned nursing homes. He was talking about determining consumer satisfaction. He stated that the Self-Advocates were much better at outreach efforts to nursing homes than OMRDD was. Brian McLane (SED) then talked about institutional diversions. He said that SED is working with children and families in order to prevent people from going into institutions. The primary goal is to prepare children to become adults and live in the community. State Education Department (SED): SED is collaborating with the Developmental Disabilities Planning Council (DDPC) and the Commission on Quality of Care (CQC) to enhance parent supports. They have not officially started their project yet. DDPC will be funding a big conference to ask the parents what supports they want. Doug from SED also stated that they will not be using the term "advocacy", but instead will call it "family support" in order to not create more adversarial relationships. Bob Boehlert from CQC talked about the PADD program (Protection and Advocacy for Individuals with Developmental Disabilities). This program focuses on ensuring that families have access to appropriate educational services for their children. The goal is to give parents the tools they need to more effectively advocate before the problem escalates to a confrontation with the school district. Additional goal is getting the most appropriate educational services for children in the most integrated setting. Dr. Parker (UCP) noted that there seems to be a lot going on between one or two agencies, but other agencies aren't included until much later. All players should be involved from the beginning. OCFS (Office of Children and Family Services): Nancy Martinez noted that so much of the work that OCFS does is collaborative that it is difficult to identify just one project. One of OCFS's efforts is to reduce reliance on out of home care for children; reducing re-entry into foster care; and reducing the number of moves after a child enters the foster care system. OCFS measures success in terms of numbers (i.e. number in foster care). In terms of the individual, Ms. Martinez stated that you look to see if the service plan met the person's needs. One way to determine this is to look at the person's health status. OCFS has partnered with DOH for an early intervention program. They are collaborating with other state agencies to develop an assessment tool for children who are entering the child welfare system. They have already begun conversations with Doug Bailey from SED to discuss how to keep children at home in their communities. OCFS is also bringing school officials and the Department of Social Services to the table in order to accomplish this. The goal is to not let children become segregated (particularly in costly out of state placements) in the first place. Commissioner Maul noted that one measure of success would be keeping someone out of the system. Brian pointed out that an issue we run into is that the various funding streams and regulations create barriers between agencies. How can we streamline regulations to get the resources to the person? The Council must consider this. Department of Transportation (DOT): The weather was beginning to get bad and the representative from DOT (as an introduction) commented that they were responsible for the snow removal. DOT also administers federal funds to enhance mobility. Non-profits can apply to DOT for funding to purchase buses for their consumers. DOT would also like to partner with the Office for the Advocate for People with Disabilities. Because of the limited funding, they also want non-profits who serve the same geographic areas to share vehicles. Commissioner Maul noted that agencies have a tendency to purchase vehicles to transport people to and from their programs, but not to jobs. Brian McLane (SED) noted that Regional Transit Authorities are supposed to be a planning agency in each area. He discussed problems with "pick up times" and that there should be a way to coordinate pick-up times for people. Kathy Kuhmerker who is currently at the Department of Health oversaw transportation when she worked for the Department of Budget. She pointed out that the idea of sharing vehicles has been suggested and tried previously and had not worked for a variety of reasons. Commissioner Maul questioned if we could just have generic transportation in rural areas, instead of specialized buses for people with disabilities? He suggested that we develop a project in a smaller municipality and create transportation "for everyone" instead of focusing on specialized transport for people with disabilities. Constance Laymon then pointed out that being in the most integrated setting means more than going to work or to a day program, it is about going grocery shopping, going to the mall, and living. Sharon from OMH concurred and said that we need to think of more than just services. Commissioner Maul suggested that DOT do a small project in a rural area. Dr. Parker stated that one of the biggest impediments to living in the most integrated setting is transportation. Brian McLane advised that transportation is an issue for urban areas too. Do we have the will to solve the problem? Commissioner Maul suggested the group get together and talk about transportation. Karen Oates and Harvey Rosenthal will be the non-state agency representatives on the subcommittee. Kim Hill then asked about subcommittees and public hearings. Maul said that they would talk about those issues at the next meeting. Constance spoke about the MIS Law and developing a standardized screening/assessment tool that gives people information on all of the options that are available. Commissioner Maul advised that the Council must pursue this tool, but he's never seen a uniform assessment tool that works. He states that the Council will have to talk about this and make sure it is best for the individual and not just because it's part of the legislation. Brian McLane suggested that such a tool could determine not only eligibility for one system, but for other agencies as well. He also stated that there should be cross training between agencies. Commissioner Maul advised that at the next meeting, the Council will talk about all the current programs that each agency has. They'll also talk about various assessments that are used for each program. The state agencies should get this information to Commissioner Maul. Harvey Rosenthal requested possible dates for future meetings, but Commissioner Maul would not give him any dates. Commentary These comments are a compilation of thoughts from advocates who attended the MISCC meeting. They are meant to provide a starting point for dialogue on the MISCC and encourage discussion about the MISCC. Before the meeting began, ADAPT tried to distribute data recently highlighted in the New York Times. The sheet noted that the percentage of younger people with disabilities in nursing homes has increased over the past several years. The handout asked a critical question: "WHY?" State staffers prevented us from distributing the paper. It may seem that the notes are somewhat jumbled and lack a cohesive structure. That was a function of the meeting itself. While Council members were encouraged to participate in the meeting, the direction of the meeting was often unfocussed or unclear. The state agencies spoke a great deal about work programs. Much of their existing collaboration efforts revolved around work issues. The state agencies tended to focus on work programs. Perhaps that is because such programs are "easier" than dealing with the deep institutional bias in our state. Unlike the extended discussion on work throughout the meeting, the state agencies said virtually nothing about "placement" or where a person lives. Nursing homes and other institutionalized residential settings were seldom mentioned, although Commissioner Maul pointed out that self advocates going into nursing homes were far more effective than professional intervention. Perhaps the other state agencies should consider that. Some of the discussion actually had nothing to do with the Olmstead decision or the Most Integrated Setting mandate of Title II of the Americans with Disabilities Act. Although the discussion of OCFS's efforts to reduce reliance on institutional placement and addressing issues in foster care are thematically related, the connection to disability and the Title II mandate is tenuous. Documenting the number of children who are placed out of home because of a disability and then identifying a plan to avoid such placement would have addressed an Olmstead issue. Placement in foster care or another setting may not necessarily be a disability issue. Commissioner Maul originally asked the state agencies to report on projects they could collaborate on or immediately start to address Olmstead. It seems that the state agencies focused on the process (collaboration) rather than the outcome of integration. Even more disturbing was that much of what the state agencies reported were initiatives which are already in place or projects they are ALREADY doing. Given that it is the year 2004 and we still have people with disabilities who are institutionalized against their wishes, the success of the current projects is questionable. Some of the state agencies didn't say much at all… if anything. Notably quiet were the Division of Housing and Community Renewal (DHCR) and the Department of Health (DOH). Neither agency reported on their efforts to implement Olmstead-related projects. However, Kathy Kuhmerker does get credit for commenting on the DOT idea of sharing resources. From the experience of people in Rochester, she is right. (Yes, you did read that correctly, I agree with Kathy.) Kudos go to… Commissioner Maul. (Believe it or not.) He reiterated multiple times that consumers should be actively involved in service delivery systems. He pointed out that the Office of Mental Retardation and Developmental Disabilities (OMRDD) has an excellent relationship with the self advocates. He modeled such relationships and encouraged other state agencies to develop or enhance similar relationships with their consumer bases. Kim Hill asked a critical question regarding subcommittees and public meetings. Her question echoed the question raised by Brian McLane at the last meeting. "How is the work going to get done?" Commissioner Maul said that this topic would be addressed at the next meeting. It needs to be. Constance Laymon raised the question of creating a uniform assessment tool. Constance correctly pointed out that this was specifically required as part of the legislation that created the Council. She is working on similar tasks locally and has a specific interest in this area. Again, this issue was deferred to the next meeting. There remain some key issues which need to be addressed. A public meeting schedule. Even the Council members don't know when the next meeting will be. This is not an effective way to run a meeting. Public participation. The people who have the greatest stake in this issue (those stuck in unwanted institutional settings) are the least likely to be able to participate. Commissioner Maul talks a good game about involving consumers and people with disabilities, but the Council has not actually done that! The "game plan". At the first meeting, the Council reviewed the law. They know they need to come up with a plan, but no one is clear on how the Council will actually write a plan. The role of community representatives. Much of the meeting is reporting by state agencies. The community representatives can comment, but they comment on what they have been presented. They don't seem to have a forum to push the larger issues if the state agencies don't want to discuss them. In some ways the meetings run more like a focus group talking about issues. There is no process for making decisions or taking action. Now what? The next meeting will be critical. The Council needs to see concrete data, goals, and develop a work plan, including ways to get public participation. They need to focus their efforts on Olmstead-related issues. The Assembly still has not made the last of its consumer appointments. It would be very helpful if they appointed a strong community advocate who could keep the state representatives in check. At a minimum, everyone should be asking, "How does this help seniors and people with disabilities escape or avoid unwanted institutional placement? When we ask this question, we must think about the full range of such placements (i.e. nursing home, psychiatric center, intermediate care facility, group home, etc.). |