Notes from MISCC Full Council Meeting
September 20, 2004


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Present: Henry Sloma, Susan Peerless (DOH), Lisa Kagan (OMRDD), Greg Montague (DOT), Karen Oates (via phone), Commissioner Maul (OMRDD), Kathleen Bunnell, Mike Paris (SOFA), Greg Jones (OAPwD), Bob Boehlert (CQC), Pat Fratangelo, Harvey Rosenthal, Lorrie Pizzola (DHCR), Constance Laymon, Michael Parker, Sandy Pettinato (DOH), Kim Hill, Paul Kietzman (OMRDD), John Allen (OMH), John Tauriello (OMH), Tim Williams (OASAS)

Commissioner Maul began the meeting by thanking the MISCC members for attending the public hearings. He commented that if the MISCC is going to make good solid recommendations, they must listen to what people have to say. He advised that each agency head should look at the testimony because it is the voice of the people who are looking for answers. From listening to the people at the hearings, Commissioner Maul advised that we are really talking about two things: (1) being receptive to people and (2) corporate change. Commissioner Maul advised that in many instances, we are not talking about major resources; we are talking about listening to people.


Comments on Public Hearings
Commissioner Maul then went around the table and invited members of the MISCC to talk about what they heard at the hearings or read in the testimony.

Harvey Rosenthal: Harvey commented that he spent the weekend reading almost every page of the testimony. He found the written testimony very powerful. Harvey prepared a statement which he read to the other members of the MISCC (this included at the end of the notes). Harvey advised the MISCC that they must focus on unmet needs and develop specific actions and timelines for moving people into the most integrated setting. Harvey discussed the dangers of the MISCC failing to act and what the report should include.

Lorrie Pizzola (DHCR): Lorrie stated that she found all of the public hearings to be compelling. She noted that someone at the public hearing in Syracuse said that people in government positions have all the power. Lorrie noted that DHCR has a good relationship with Independent Living Centers and that changes are underway. Lorrie thinks that there is an advocate in each of us and she looks for the MISCC to be an advocate. Commissioner Maul commented that he understands that housing is an important issue and the MISCC will devote the October meeting to housing. He also looks forward to the Legislature's report on housing.

Tim Williams (OASAS): He found a consistency in the testimony in that there is a need for housing, transportation and case management services. In Albany, someone brought up peer services and said that AA was one of the oldest peer groups out there. Tim commented that he thinks peer groups are extremely important because if a person gets involved in drugs or alcohol in the community, all of the other services that we provide won't matter.

Bob Boehlert (CQC): Bob stated that he was impressed by the practical interchanges. He noted that many people presented personal stories and that state agency representatives followed up with people after the hearing to tell that about existing programs that could assist them. Bob advised that we need to better advertise available community-based services and supports.

Pat Fratangelo: Pat noted that people said loudly and clearly that they just want to have a real life. People said that they weren't satisfied with the options that they were given. We need to be more flexible to meet people's needs. Pat suggested that the MISCC get three or four people who feel trapped in a particular system involved in discharge planning so that we can learn to be more flexible. The challenge is how MISCC members help all of their departments to understand that better and listen to people. We need to learn from a handful of people what they want with their lives in order to create policies. This would tell us how we could tweak things just a little bit to meet people's needs. People won't ask for the Taj Mahal, they will just ask for a normal life. Commissioner Maul asked where we would get these people. Pat advised that they are the people who are fighting the hardest to get out of nursing homes and group living situations. Commissioner Maul asked the rest of the Council if they would like to do this. No one objected. Constance commented that if we start at Step One and go all the way through Step 99, it would be real to us. Commissioner Maul advised that the MISCC will reach out to organizations that provided testimony and ask them for names of people.

Greg Montague (DOT): Greg commented that the longer he works with Harvey, the more he tends to agree with him. Greg advised that the Public Hearings showed him that there is an urgent need that's out there and the need to get things done now. He commented that the public hearings made everyone re-charge themselves to the task. It is personal for MISCC members because they are people first and bureaucrats second.

Greg Jones (OAPwD): Greg advised that from a personal standpoint, he left the public hearings saying how people in attendance had to be moved by what they heard. Greg noted that he has reviewed over 200 grant applications for the DOT 5310 program. As a result of the Committee and MISCC meetings, this year he has looked at the grant applications from a different perspective to ensure that there is more coordination with transportation services. Greg commented that the hearings made him realize how lucky all of us are in our ability to get out and attend the hearings. He is looking forward to implementing the things that we heard around the state.

Kim Hill: Kim commented that she was surprised by the openness of the stories. Advocates and people with disabilities seemed dissatisfied. Kim came up with a list of specific recommendations that she wanted the community services committee to include in their report. Kim passed out this list of recommendations and hopes that the recommendations will be included in the final MISCC report.
She wants each agency to say what they can do now and incorporate this into the report. Commissioner Maul advised that the common denominator seems to be how the testimony affected us. He commented that it is fine to sit at the table and be affected, but it is different organizationally to make changes. Commissioner Maul advised that Kim said that each agency should put together specific actions that they can take. He questioned what the states agencies thought about this. Sandy Pettinato (DOH) advised that we should do this. People need housing, transportation, case management and coordination of services. She believes that we need to reshape and reform the system to meet the needs of people. She loves the idea of getting a group of people together and helping them to get into the community. Commissioner Maul asked that within each state agency, what can be done?
John Allen (OMH): John advised that he was struck by the number of people that cam forward and presented their personal stories, including their personal triumphs. People talked about unique ways that they overcame perceived barriers. He commented that attitudes often impede people, not just regulations. He heard about personal triumphs that were made possible because there are a group of people who work in the system who have a "I can" attitude. He noted that we need to change attitudes to use what we have. One of our challenges is to look at changing fundamental attitudes to meet people's needs within the framework that we have.

John Tauriello (OMH): John noted that OMH had been looking at these problems and issues long before Olmstead and the MISCC and that they realized when advocates brought up individual cases that state agencies said that there are existing programs to assist people. Local solutions to local problems is the way to go, but there may be some gaps. He agrees that there must be a change in attitude.

Michael Parker: Michael commented that Pat's suggestion is a good one. He feels that it would help to crystallize where the difficulties are.

Kathy Bunnell: Kathy commented that Kim's points are great. They are the key issues in Kathy's mind. Kathy noted that there was an absence of the elderly and advocates for the elderly at the public hearings. She noted that the stories of people with disabilities and seniors are very different, but the needs are the same. The elderly are hesitant about entering the system, which is no different from what we heard at the hearings from people with disabilities. Kathy advised that she wants to include the elder population in Pat's suggestion.

Mike Paris (SOFA): Mike advised that Neal Lane said that this provided an opportunity for sensitivity. This affects our constituency greatly. New program models that could come out of Pat's suggestion could be great.

Constance Laymon: Constance advised that she attended all of the hearings. She noted that there is no mechanism for people to leave institutions. Nothing happens with the MDS data. Constance would like to see that people can get out and start living their lives. If you check off on a sheet that you don't want to be in an institution (as with the MDS question), you should immediately go to a discharge planner that can assist you with returning to the community.

Henry Sloma: Henry advised that he reviewed the testimony and said that it was personal examples of problems that we know to be true. He commented that we should be mindful of our responsibility to make a report that is a template for change and not just sit it on a shelf somewhere. Henry sees is as a question of how we maximize available resources. He commented that resources in our state are not very well coordinated. The question is how to channel resources and maximize them. The report must have a practical side and we must avoid duplication by coordinating resources. The challenge is to advance it forth as a practical vehicle for change.

Karen Oates (via phone): Karen commented that she is concerned that bureaucrats are not really set up for change. Bureaucrats must look at what they are willing to do differently. This must be done not only on the state level, but also on the local level. Commissioner Maul advised that we have to work with local agencies to see how willing they are to re-structure.

Commissioner Maul commented that some of the answers have become obsolete. He remembers that at one time, people were dying to get into nursing homes and now we need to re-tool our resources. We need to listen to what people want. As for next steps, Commissioner Maul advised that each agency will present what they can do within their agency, and that we will secure names of people who are trapped in segregated settings so that we can gain practical experience.


Committee Reports
Commissioner Maul advised that once a committee has completed their report, the rest of the MISCC will be commenting on the report. Commissioner Maul invited the committee chairpersons to discuss the status of their reports.


Data Committee (John Allen):
John discussed the structure of the report. The report will present data as required by the MIS Law. This includes the number of people in institutions, the number of people eligible for community-based services and the number of people dependent on community-based services. The report will also discuss waiting-list related questions. The Committee is looking at other MISCC plans from around the country and also try to determine if there are alternatives to waiting lists, how lists are created, and the question of assigning priorities for moving people up on the list. John states that he hopes to have the report finalized for committee member comment later this week. John noted that all agencies that reported data show the community-side going up and the institutional side going down.

Harvey asked John how he is gathering waiting list data. Is it from the state? Is it from providers? Is it from consumers? John noted that the committee is looking to present solution options that have come from a variety of sources.


Quality Assurance/Quality Improvement Committee (Mike Paris):
Mike noted that the committee met four times. State agencies were surveyed and the committee reviewed 19 surveys. Neal instructed committee members to review the surveys and identify gaps, strengths, examine the issues and identify unique data elements. The Committee submitted their report which can be used by agencies to incorporate into existing practices. The report contains guidelines. The committee forwarded the following two recommendations to the full MISCC:

   • The MISCC should direct state agencies to integrate the quality assurance principles and guidelines identified by the QA/I Committee into their existing evaluation process.

   • The MISCC should call for or establish a workgroup or task force that will evaluate the feasibility of developing model quality assurance instruments that could be applied statewide.

Harvey noted that the committee also said it's not just about consumer satisfaction, it is also about consumer outcomes.


Assessment Committee (Lisa Kagan):
Lisa discussed the charge of the Committee. She advised that the committee asked state agencies about their current assessment procedures. The committee looked at existing assessment procedures and things that are hopeful, such as the Point of Entry work, the Nursing Facility Transition Starter grants and moving people out of large Intermediate Care Facilities. The Committee noted the following principles of assessment:

   • Assessments should involve processes versus instruments. It is different from eligibility evaluations

   • Assessments should focus on community supports and service needs. You can find these out from the person

   • They must be strength-based

   • Natural supports should be taken into account

   • The person does not and should not have to know the bureaucracy. It should be a functional assessment. For example, people should tell you what they need assistance with, and should not tell you what service they need.

   • Assessment should recognize the dignity of risk

   • Assessment should take into account cost-effectives

The Committee made the following recommendations:

   • Single assessment process

   • Full MISCC should discuss logistics of the MIS requirement of having a community-based agency in each county.

   • Shouldn't develop a single portal, but a single place where people can go is fine.

   • Community-based agency should be an independent agency that has extensive knowledge of community-based services and develop strong linkages to community-based resources, hospital discharge planners and other places where people with disabilities are found.

   • There should be assurance that each community-based agency is carrying out the tasks.


Transportation Committee (Greg Montague):
The Committee hopes to promote cooperation of local agencies. Greg discussed the layout of the report. The first part of the report will focus on President Bush's Executive Order which deals with coordination of federal human services transportation. Greg noted that on October 28th, he will attend a kick-off event for this initiative as a representative of the MISCC. The report will also discuss the survey of state agencies, a description of best practices, a summary of the public hearing comments, barriers to coordination and recommendations. Greg advised that the Committee talked to two paratransit providers and 3 local organizations. As far as public hearing testimony, Greg noted that the Committee heard that rural transportation is a major issue, paratransit is not ADA compliant and vehicles are in disrepair, there is a need for accessible cabs, there should be seamless transportation system, the application process for the 5310 program should be streamlined, there is a problem with the accessibility of fixed route buses, persons with disabilities should be included on transportation planning boards and that paratransit should expand beyond the ADA. As far as barriers to coordination, there are regulatory (DOT) barriers and turfism. There are also issues with mixing of client population, markings on buses and the 24 hour advance notice requirement of paratransit. The recommendations that the Committee made include the following:

   • Applicants for the 5310 program should be scored higher if they promote coordination.

   • Metropolitan Planning Organizations should focus on the transportation needs of direct care staff.

   • There should be linkages between the 5310 program and paratransit.

   • There should be a public education program so that people know about accessible fixed route buses. There should also be an incentive program to move people from paratransit to fixed route buses.

Henry Sloma noted that most public transportation agencies take a "minimum position" and will only do what the ADA requires.


Community Services Committee (Sandy Pettinato):
Sandy advised that the Committee has a final report that they will be submitting to the Full MISCC. Sandy reviewed the charge of the Committee and advised that they have had 5 meetings since April. The Committee has inventoried and compiled a chart of state agency funded programs. The chart will be included as an attachment to the report. The Committee made observations about the whole system and developed guidelines, principles and some actual recommendations for the full MISCC to put in the final report. Some of the observations that the Committee made were:

   • New York offers lots of services.

   • We may need better services. The state agency that oversees a particular program needs to review the program to see if it works.

   • Housing is the critical need.

   • There is a need for case management.

   • There is a need for service coordination.

   • There is a need for comprehensive information about services.

   • There is a need for transportation.

   • Culture change is needed.

   • Good discharge planning is needed.

The Community Services Committee also established principles, guidelines and recommendations to the full MISCC. The following is some of what is included in their report to the MISCC:

   • The MISCC should endorse the principle/vision of providing services in the most integrated setting.

   • Everyone should identify best practices and model programs after what works.

   • All agencies and programs should develop systems that support self-determination, are person-centered and support personal responsibility.

   • There should be an appropriate balance between medical and non-medical services.

   • There are budget realities and fiscal restraints. We need to spend the money the right way.

   • Everyone needs to give input and have a say.

   • Public and private agencies should develop an ongoing process to evaluate services and supports that allow people to live in the most integrated setting.

One statewide approach does not work; local variances must be taken into consideration.

   • The committee recommends a Point of Entry system.

   • The committee recommends improving the discharge planning process.

Harvey noted that in all of the groups, cultural competence was important. Harvey also said that at the hearings, he heard about the importance of peer support.

Comissioner Maul advised that the next two meetings will be held on October 14th and October 28th. There will be 2 presentations on housing at the next meeting.


Audience Input
Jeff Wise from the Coalition for Adult Home Reform discussed the issue of people being stuck in adult homes because there are currently no other options. Jeff advised that the state should meet its Olmstead obligation to this population. He also discussed the waiting list issue.

Chris Hilderbrant asked if Kim Hill's comments were incorporated into the Community Services Committee report. Sandy Pettinato (DOH) advised that the comments were incorporated and they have asked the full MISCC to consider them. Chris also pointed out the limitations of having agencies self-report. He advised that the MISCC is supposed to create a plan that ALL state agencies must follow. Chris expressed that he was glad that the MISCC would be discussing housing. He asked if we could present the NYSILC Housing paper at the October 14th meeting. Commissioner Maul advised that he would take the points in the paper into consideration.

Raymond Schwartz from a clubhouse in Jamaica, Queens and co-chair of the NYAPRS Public Policy Committee provided testimony to the MISCC as he said he was unable to attend the public hearings. Raymond discussed the issue of housing and advised that the current community-based housing is inadequate to meet needs.

Chris Hilderbrant suggested that the MISCC denounce the Governor's vetoes related to funding for mental health services, Independent Living Centers and housing. Commissioner Maul thanked Chris for expressing his suggestion.

Commissioner Maul advised that the next steps are:

   • Discussion on housing.

   • Presentation from state agencies on the concrete steps they can take.

   • A report on the experience with individuals the MISCC will be working with.


ADAPT Commentary
Pat Fratangelo made an excellent suggestion about having the MISCC work with individuals who are trapped in nursing homes and other institutions. Hopefully, by doing so, MISCC members will realize that it is not just about educating people on existing services. It is also about the very significant gaps in the system and barriers that prevent or delay people from living in the most integrated settings. Harvey also pointed out that the MISCC must identify unmet needs and develop a plan with specific actions for ensuring people can live in the most integrated setting with specific timelines.

We are glad to hear that the MISCC will finally be addressing the issue of housing. The MISCC has been meeting for a year, and during this time the issue of housing has been ignored. While we are concerned because Commissioner Maul will not let grassroots advocates present their recommendations, we are hopeful that the MISCC will at least hear these recommendations because they should be included in the Assembly's report on the issue of housing.

The complete report of the MISCC is to be finished in November 2004. Principles, guidelines and information sharing will not be enough to ensure that people with disabilities are able to live in the most integrated setting. In order to be successful, the report must include specific timelines for moving a percentage of people into the most integrated setting, detailed plans to address the gaps that exist in the system and detailed plans to address barriers. The goal of the MISCC should be to make community living the norm for New Yorkers with disabilities. Anything less will be a failure and as Harvey Rosenthal noted "will result in a public disgrace for our state that violates the laws of our country".


Statement at the MISCC's September 20th Review Meeting
We have just completed many months of important deliberation that has yielded a host of important findings, recommendations and promises of support and callaboration from state and local officials, local government , consumers, provider and family members across the state. I want to thank the Governor, the state agency commissioners and their representatives, all those who provided testimony, the advocacy community and my fellow Council members for their dedication and countless hours of sincere, heartfelt effort.
Yet, our very important work will prove to be yet another empty exercise in planning if we don't get explicit about the numbers of New Yorkers with unmet needs across populations and localities…and craft specific timelines to move a serious percentage of each into most integrated settings each year until the job is done.
The series of public hearings we just completed gave powerful evidence of how important the MISCC's activities are to tens of thousands across the state; in every hearing, we heard about the crying need for more housing, better transportation systems, flexible funding streams, streamlined regulations and the great value of peer transitional services and community supports.
Addressing this heartfelt and hopeful call to action is not just the right thing, the humane thing, the path to independence and dignity and productivity for hundreds of thousands, the cost-efficient thing, it's the law.
To fail to act in a serious way that

   • fails to commits the state and its stakeholders to serious wholesale reform for adults and children and elders and

   • fails to put on the street a broad array of new program models (what we already know is working from the most important resource, those people and providers on the street), and fails to streamline our regulatory policies and expand the needed funding streams and that

   • fails to make local planning sensitive and from the bottom up and culturally sensitive and appropriate will result in a public disgrace for our state that violates the laws of our country.

I'm sure we're all struck by the powerful calls to action by those who testified who said

   • 'Please fix the system so that people like me don't have to go through this'

   • We don't lack for analysis and recommendations, we fall short in actually following through and making them happen.

   • We hope the MISCC has used the 18 months well; it's critical to not make thousands of New Yorkers with disabilities to wait another 18 months.

   • 'We are a community waiting for your action'

Many of us on the Council are committed to stepping up our preliminary efforts over the past year into the next year and future years, to get the hard work done,

   • ultimately, the key will be for us to articulate specific plans to enhance and expand both existing and new best practice community services and support for our NYers with disabilities.

In doing so, we must make recommendations for detailed actions and timelines

   • to improve the quality of the way we engage, speak to and reach a clear sense of each individual's personal goals and needs and

   • to improve systems of quality assurance that tell us in clear simple ways whether we're helping people…or failing them.

This report will only be a beginning. Many of the community members on the Council look forward to serving next year and many years to come, revising our recommendations, overseeing their implementation from agency to agency so that New York can be a model state for ensuring life and work in the most integrated setting for our citizens with disabilities.

Harvey Rosenthal
Kimberly T. Hill


Comments on Community Services Committee Interim Report Draft 2


Sections I,II and III are fine.


IV. Observations about the Community Services System
Additional observations presented at the public forums should be included in this report. I am not deleting any of the observations that are contained in the draft report. However, I feel that there are many observations that have been left out of the draft report, including many put forth from the Coalition to Implement Olmstead in New York, that should be added:

   • There is an institutional bias in New York State's Medicaid funded long-term care system. Funding is securely tied to institutional settings while community resources are unavailable to support people in the most integrated setting.

   • Coordination, authorization and management of community-based services in New York State are decentralized. Consequently, the availability of community-based services varies widely from county to county and unnecessarily forces people into institutions.

   • The county share of the Medicaid program has created a disincentive to authorizing community-based services. This is particularly true in rural counties with a limited property or sales tax base.

   • New York State has focused virtually all of its Medicaid waiver resources on people with developmental disabilities and significantly limited access for other populations to community-based services under its Medicaid waiver programs.

   • The personal care assistance program is an essential program that allows people of all ages with disabilities to remain the community.

   • Even where community-based services due exist and are provided according to NYS regulations and individual needs, the lack of affordable, accessible and integrated housing forces people into less integrated settings.

   • NYS home care regulations must be changed to recognize the dignity of risk and consumer choice.

   • The shortage of direct care workers, and the low wages that they receive, negatively affects the availability of services.

   • The mental health system lacks adequate community supports.

   • The Developmental Disability system is biased toward congregate living.


V. Recommendations
Additional recommendations that were presented at the public forums should be included in this report. I firmly believe that the Community Services Committee should go beyond recommending principles and guidelines, and instead should recommend specific actions to be included in the MISCC's final comprehensive, effectively working Olmstead Implementation Plan. I request the following be included in the draft report:


Medicaid Waiver Services

   • The MISCC should support the Nursing Facility Diversion and Transition Medicaid Waiver legislation (A.11798/S.7715) which would balance the Medicaid funded long term care system and help to eliminate the institutional bias.

   • The MISCC should oppose any attempt at creating an 1115 Medicaid Waiver for long-term care services.


Implementing Olmstead

   • Every state agency that provides institutional services must develop a plan to transition five percent of the institutionalized population into the most integrated setting each year.


Home Care/Personal Care

   • The Department of Health must have greater oversight and more closely monitor counties to ensure that community-based services, such as the personal care assistance program, are administered uniformly throughout the state.

   • New York State home care regulations must be amended to promote consumer choice and dignity of risk.

   • Federal regulations allow any relative, except a spouse or a parent of a minor child, to be paid as a personal assistant. New York State regulations are far more restrictive than federal regulations and prohibit certain relatives from being paid as personal assistants. New York State's regulations must be amended to match the Federal regulations.


Housing

   • The state should create an Affordable and Accessible Housing Trust Fund and an Accessible Housing Registry in order to promote affordable, accessible and integrated housing.

   • New York State should allow individuals in Adult Homes to use their increased state share of Supplemental Security Income as a housing subsidy in order to find affordable housing in the most integrated setting until the individual can secure a more general subsidy.


Mental Health Services

   • The Office of Mental Health and the Department of Health should collaborate and create flexible waiver-like services for people with mental health disabilities that would allow them to use institutional funding to live in the most integrated setting.


Services for People with Disabilities

   • OMRDD, OMH, DOH, SOFA and other state agencies should direct their voluntary provider agencies to provide services to people with disabilities in integrated apartments and homes owned by the individual. People with disabilities should not be forced into congregate settings in order to receive community-based services. OMRDD, OMH, DOH, SOFA and other state agencies should track the number of individuals residing by themselves in an apartment or home.


County Share of Medicaid

   • The county share for Medicaid funded community-based services should be eliminated in order to help reverse the institutional bias.


Workforce

   • New York State must develop a comprehensive strategy to hire and retain direct care workers in both the medical and non-medical service systems.


Medicaid Coverage

   • 10 NYCRR, Parts 85-86 should be repealed as it reinforces the institutional bias. This regulation states that hospitalized individuals who are evaluated to be eligible for nursing home services will have their Medicaid coverage terminated unless they accept the first available nursing home bed within a 50-mile radius.


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