MISCC Meeting Minutes
October 28, 2004



Jump Directly To... Committee Reports Housing Nursing Home Transition Project Audience Input ADAPT Commentary Statement to the Most Integrated Setting Coordinating Council Statement at the MISCC's October 28th Meeting Data Transportation Quality Assurance (How Well Do Services Work) Community Services Assessment

Those in attendance: Commissioner Thomas Maul (OMRDD), John Allen (OMH), Kathy Bunnell, Karen Oates, Michael Paris (SOFA), Greg Jones (OApD), Kim Hill, Harvey Rosenthal, Constance Laymon, Lisa Kagan (OMRDD) Susan Peerless (DOH), Pat Frantangelo, Donna Mackey (OMRDD), Paul Kietzman (OMRDD), Nancy White-Martinez (OCFS), Greg Montague (DOT), Lorrie Pizzola (DHCR), Kathy Kuhmerker (DOH)

Welcome
Commissioner Maul opened the meeting with a welcome and informed the group that the Governor had signed the Nursing Facility Transition and Diversion Waiver into law yesterday. He turned it over to Kathy Kuhmerker from DOH to explain the new waiver to the Council.

Kathy talked about what the waiver will do for individuals in nursing homes and other institutions. She indicated it would provide community supports-a lot of Medicaid State Plan services as well as some new services to help people live in the most integrated setting possible. She indicated that she and DOH are very excited about this new waiver. Kathy stated there is a lot of work to do: meet with stakeholders, work on cost-neutrality, and complete an application to present to the Federal government for approval.

Constance Laymon asked Kathy about how long the application process to the feds would take. Kathy responded that she is not sure; getting a waiver through the feds is a lengthy, complicated process. The DOH will continue what they are currently doing to help transition people (the Nursing Facility Transition Starter grant work with the DDPC and the Discharge Planning Workgroup), though, while the application is being drafted.

Commissioner Maul asked whether the minutes from the previous meeting were reviewed by the Council and could be approved. The Council indicated that the minutes were not received. Susan Peerless corroborated and indicated they would be ready prior to the next full council meeting.

Committee Reports
Commissioner Maul then moved to begin discussing the committee reports that were issued prior to this meeting for the Council's review and asked the council if they were prepared to discuss them.

Pat Frantangelo stated that the reports were hard to digest in the short time they had to review them prior to this meeting. She would like more time to comprehensively review the reports. The rest of the Council agreed.

Harvey Rosenthal added that he and Kim Hill had completed a preliminary review to share with the Council (see statements below).

Kathy Kuhmerker added that as she was reviewing the reports she noted that the vast bulk of information that DOH put together was not submitted to the Data Committee. She will be getting this information to John Allen.

Constance indicated it would be helpful for the council to summarize and indicate the highlights of the reports and maybe discuss some next steps. She indicated that she would like some more time to digest what is included in the reports.

Commissioner Maul agreed that general comments could be shared and then at the next full council meeting specifics of the reports will be reviewed. Commissioner Maul asked Harvey to review his statement with the Council.

Harvey indicated that Kim Hill would begin. Kim reviewed her statement with the Council and then stated that she and other appointees would like two weeks to review the reports and then submit their findings to the Council.

Harvey indicated that he found issues with all five reports, which allude to the formation of principles and guidelines. Harvey advised that we would all be dissatisfied if the report goes out like this. Commissioner Maul asked Harvey which committees he was on and why didn't he say anything during the committee meetings. Harvey responded that he was a member of all of the committees and that all along he and the advocates had said that principles and guidelines were not enough.

Constance added that the reports do reflect the charges of each committee, and she realizes it is a huge undertaking. The charges given to the committees were very narrow, and not the end all be all. She feels that the Council is just scratching the surface.

Commissioner Maul indicated that the charges meet the law and Harvey responded that there are pieces of the law that have not even been touched yet. Harvey went on to say for example, in the Data Committee's report, the most important piece, the numbers were unsatisfactory in their level of detail. It does not report if the state agencies met the goal in regards to listing those in institutions. Further, OMRDD did not include individuals in group homes or family care, and instead seems to be biased about talking about hospitals.

Maul indicated that the people involved in family care might take offense to the fact that Harvey called family care an institution. Harvey responded that we need to come to an agreement on what defines an institution.

Pat Fratangelo suggested that the Council might want to define institution by a certain number of unrelated people living together in a residence.

Harvey went on to say that it should be a requirement to report the number of people in a particular setting and the number of people who want to get out of an institution. OCFS presented institution numbers, but not who wanted out; DOH did not list numbers; OMH indicated they were unable to calculate numbers; SOFA only reported on EISEP numbers. Harvey wants a better level of specificity. In terms of reporting mechanisms, DOH is general, OCFS has the child care review, and OMRDD has the TABS system.

Maul indicated that different agencies are at different points in time in regard to databases. Harvey responded that these are the unmet needs that need to be identified. Kathy questioned how an agency could provide data that they don't have.

Harvey indicated that some agencies have little or no data and give general guidelines/principles--the council does not want to give a vague report. Commissioner Maul advised that the differences in the databases should be addressed. Harvey responded that a baseline should be established to meet the goal to have better data put together and watch it progress over a period of time. Commissioner Maul commented that we do need better data and progress needs to be made. He stated that a plan needs to be proposed with some kind of timeframes.

John Allen advised that the Data Committee struggled because the number of people able to be discharged is a volatile number. The numbers are not static; it's a fluid process.

Harvey noted OMH's argument that waiting lists cannot be done. John Allen commented that a question he has is a waiting list for what? There is no way of knowing how much housing stock in available in the general community. Harvey advised that you do not need to know what is available in order to create a waiting list. Constance agreed - it's who needs it, not what's out there.

Maul indicated that Self-Advocates have gone into family care and ICF's to ask people what they want. He knows his people want something else.

Harvey then referred to the OMRDD NY-CARES program as being a good model and that he is not getting that from other agencies, such as the Area Agencies on Aging (AAA's)-not required to keep data, nor has SOFA requested it in years.

Maul responded that different agencies have different ways of collecting data. He questioned if it was possible that a model could be constructed that all agencies buy into?

Karen Oates commented that the OMRDD model captures the information. She questioned if we could loosely set up a model in New York State for data collection that is based on the OMRDD model. Across the state there are big gaps in services. If the information is disseminated to each county, that could build more data. Karen commented that we need the data to say who is in the plan before we develop a plan.

Maul then reiterated his recommendation to create a loose model/general structure for the agencies to follow when collecting data.

John advised that OMH is currently building a data structure that answers the MISCC's questions. However, if the MISCC gave OMH a model and then had to re-create this, it would be problematic. John advised that OMH would welcome recommendations from the Council members on what data they want to see and OMH will present a plan on how they will acquire it.

Harvey then began a discussion about what is an institution-is it a two-person family care home; a twelve person ICF and Kathy responded that some people may be happy living in an ICF.

John questioned if the Data Committee should reconvene the technical people from the agencies? Harvey commented that this is a good idea. John commented that it is problematic for us to call things an "institution" when we don't believe that they are because of litigation issues.

Maul said that each agency should come up with a plan for collecting data and put it out for public review. Harvey indicated that a time frame should be established for data collection.

Pat added that the council needs to define an institution and a community based setting and find out what people want in regards to the most integrated setting. Commissioner Maul indicated that there needs to be more discussion about goal setting.

Harvey then went on to outline the remainder of the reports:
Transportation had good recommendation; it visualized better using the federal money, but did not discuss better use of the non-profits.

Quality Assurance/Quality Improvement-admit they have more work to do right in their report. Discussed importance of QA/QI-report demonstrates good thinking, not sure how to get there.

Community Services-preliminary; needs ongoing work.

Assessment-promising, but needs to come up with a process.

Pat Frantangelo indicated that the assessment report was passive, directing the agencies instead of indicating what they "should" be doing. She suggested that we need to let agencies know exactly what they need to comply with and the date they need to comply by.

Harvey commented that the QA/QI Committee brought in representatives from CQC to evaluate existing Consumer Satisfaction tools. He found this exercise to be very helpful.

Commissioner Maul stated that everyone would have the opportunity to review the reports again and add some more meat to them. Kim Hill stated that we can't transition people with guidelines and principles and Maul responded that the guidelines and principles should have actions added. Lorrie Pizzola commented that clear, concise actions were needed, some short term, some long term.

The Council appointees agreed to further review the committee reports and add to them. Maul asked who else wanted to be a part and Lisa Kagan and John Allen volunteered. Harvey questioned if the group could work with advocates. Commissioner Maul advised that yes, they could work with advocates on this. He also indicated that he would like to have a conversation with all in two weeks to see where they are.

Housing
Commissioner Maul then moved the discussion on to Housing.

Lorrie Pizzola reported that the DDPC and CIDNY gave a presentation on the accessible housing registry at the meeting of the Interagency Task Force on Housing for People with Special Needs. A test link will be available to each of the agencies so they can see how it works before it goes public. Lorrie advised that the Banking Department offered to work with the DDPC to connect them to realtors. The Interagency Task Force has also reviewed fees and funding cycles and how to streamline the process to make it easier. A sub-group was established to begin working on this.

Nursing Home Transition Project
Pat Frantangelo went on to discuss the nursing home transition project. Pat has the names of 11 individuals, expects to be at 14-would like one more from OASAS with a substance abuse issue and one child from OCFS. She has already connected with two of the people. Pat indicated that she is working on an assessment tool that can be used for all people; it will show where they are at, where they want to be and obstacles that they've hit. Pat is also developing a HIPAA compliant confidential release form.

Lisa Kagan reminded the council to keep a list of systemic issues that come up.

Audience Input
The meeting was then opened for audience input.

Bruce Darling asked if we could get copies of the reports. Commissioner Maul advised that he wants to wait until there is Council consensus on the content of the reports. Bruce Darling then commented that it is deeply disturbing that agencies are unsure of the numbers they are serving. Where is the millions and sometimes billions of taxpayers dollars going that are funding these programs if there is no data to confirm what the money is actually being used for? Bruce pointed out that MMIS could be used to obtain the data that is needed. Bruce also indicated that if the MISCC failed to develop an effective plan to get people out of institutions, ADAPT and other advocacy groups would hold Governor Pataki accountable for the failure.

Cliff Zucker from the Disability Advocates went next. He indicated that his agency is currently in litigation with OMH regarding psychiatric centers discharging people with mental health disabilities to nursing homes even though their discharge summaries do not indicate a need for this level of care. Many of these individuals are under the age of 40 and are being placed in nursing homes in NY, NJ, and MA. South Beach Psychiatric Hospital has been the guiltiest of this practice. Cliff wanted the answers to where do they end up and is this occurring under the radar? He indicated that there are articles in the NY Times and that MHLS and OMH are aware of this.

Chris Hilderbrant-The changes that have to be made require more than a gentle nudge. Council should not disband until all people are free.

Nick Rose-State Education-data to share?

Barb Knowlen-It is important to turn off the faucet and stop hospitals from putting people into nursing homes who have homes, transportation, etc. because they do not have the in home supports. Kathy Kuhmerker responded that DOH knows this is a problem and they are working with discharge planners to address this.

Bob Gumson-State Education Department-Schools for the Blind and Deaf have data that was reported, but not included in the data committee report. John Allen indicated that he never received the info and Bob indicated that he e-mailed it directly to John's personal e-mail address. John indicated it should be resent.

Tracie Crandell-the Discharge planning work group is not working to end systemic barriers or develop strategies to discharge people to the most integrated setting. The Discharge Planning Workgroup is focused on education; what information the discharge planner needs in order to discharge someone. Kathy Kuhmerker responded that the work group is looking at things with immediate results and to arm the consumer with what they should be looking at. Kathy noted that she has heard of animosity on the committee. Tracie advised that she did not want the MISCC to be under the assumption that the Discharge Planning Workgroup is looking at systemic barriers that impede discharge into the most integrated setting. This is not the purpose of the Discharge Planning Workgroup. Bruce added that the Discharge Planning Workgroup is not looking at regulatory or policy barriers. Commissioner Maul requested that if we have recommendations for changes to regulations or policies, we should email them to him.

Constance-added a story about a friend who after a suicide attempt was hospitalized, when the hospital could no longer bill, he was shipped to a nursing home in Massachusetts (the hospital lied to him).

Commissioner Maul ended the meeting and reminded the Council to review the reports and e-mail the comments. The next council meeting will be scheduled after all comments are received and the sub-group has an opportunity to work over the existing committee reports.

ADAPT Commentary
Despite the apparent lack of concrete action in any of the committee reports, this was the most promising MISCC meeting to date. With a lot of advance preparation, Kim and Harvey were able to bring the plans of the state agencies writing the reports to a screeching halt.

Harvey and Kim were also able to secure an agreement from Commissioner Maul that MISCC members could work with advocate groups in identifying areas where the Committee reports were weak, or even specifically failed to satisfy the legal tenets established in the Most Integrated Setting Law.

We have attached the statement and committee report analysis distributed by Kim and Harvey at the meeting on October 28, 2004.

---

Statement to the Most Integrated Setting Coordinating Council
October 28, 2004

As non-agency, appointed members of the Most Integrated Setting Coordinating Council, we feel that it is our responsibility to take this opportunity to express our concern over the lack of necessary data and specific recommendations that have thus far been included in much of the sub-committee draft reports. We, like every other MISCC member, feel that it is our obligation to New York's disability community to adhere to and comply with the functions, powers and duties that have been bestowed upon us through the law that created this Council. The law states that:

"The council shall develop and oversee the implementation of a comprehensive statewide plan for providing services to individuals of all ages with disabilities in the most integrated setting."

While we commend each sub-committee for the hard work and extensive research that was completed in the effort to determine the current state of affairs, we believe that so far, the MISCC sub-committee draft reports do not contain the information and recommendations needed to deliver our ultimate goal of transitioning people out of institutions and into settings that are integrated within our communities.

Specifically, the law demands that:

Each commissioner and director serving on the council shall ensure that his or her agency implements every aspect of the plan developed pursuant to subdivision one of this section which falls under the responsibilities of his or her agency. The council shall oversee the implementation of the plan created pursuant to subdivision one of this section and shall update such plan as necessary to ensure that waiting lists for community-based services for people of all ages with disabilities are moving at a reasonable pace and to ensure that the state of New York is developing a system of long term care that allows individuals of all ages with disabilities to reside and function in the most integrated setting.

In other words, we do not feel that most of the findings, principles or guidelines enumerated in the reports are specific enough to actually be implemented or will effectively get people with disabilities out of the segregated settings in which they currently languish. Without accurate and specific data from all agencies involved, and without specific recommendations that require each MISCC-represented agency to take precise actions, we fear that the MISCC simply cannot accomplish its goal.

In the time that we have had to comb through the sub-committee draft reports, we have taken the liberty of outlining examples of the gaps that exist and providing some suggestions that we request to be included in the full MISCC report. We also plan to submit within two weeks a comprehensive list of gaps and recommendations that we hope the full MISCC will endorse and include in the report that is to be issued.

While we recognize that it is the goal of the MISCC to issue its first report sometime in November or December, we request that we extend that deadline. We feel that, while it is not ideal, extending the amount of time we have to complete the report to include the data and recommendations called for in law will ultimately benefit all New Yorkers with disabilities.

Since the law specifically calls for the MISCC to be a long-term entity, we recognize that another report will not be expected until a year from the date of the first report's issuance. New Yorkers with disabilities who are institutionalized, or at risk of becoming so, cannot wait another year for waiting lists to be established and specific plans for integration to be created and implemented.

The council shall provide a report to the Governor, the Temporary President of the Senate and the Speaker of the Assembly one year after the effective date of this article and annually thereafter. Such report shall detail the plan developed pursuant to subdivision one of this section, any changes made to such plan, all steps taken to implement such plan and their outcome, and any future actions planned.

Thank you for your time and consideration.

Harvey Rosenthal
Kimberly Hill

---

Statement at the MISCC's October 28th Meeting

Since the first meeting of the MISCC last fall, we made a firm commitment to ensure that our work would lead to meaningful, specific outcomes, and not become a superficial exercise that produced a report that would 'gather dust on a shelf.'

As mentioned in the statement of September, "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."

In reviewing the draft reports of each of the 5 workgroups, it is clear that we have only scratched the surface in meeting our legislative mandates. We believe that such a finding would likely be upheld by the independent organization the state is required to employ to evaluate our plan, and its ultimate implementation.

This is not an indictment of the personal commitment and intentions of the members of our Council: it is simply a call to considerably more action to meet our legal mandate and our commitment to the hundreds who testified at our public hearings and the thousands of New Yorkers with disabilities they represent.

To be more specific, here are some initial observations of our work to date. They focus particularly on the Data group's work since it is so critical to our mandate.

Data
Critical to our work is our ability to identify specific numbers of New Yorkers from specific disability groups who currently reside in institutional settings and have expressed the goal of moving to a more integrated community setting and have demonstrated their readiness to do so.

The Department of Health met this goal with regards to residents of nursing homes, but did not provide that data for other institutional settings it authorizes (e.g., assisted living facilities). OMRDD provided numbers of individuals who reside in a number of institutional settings, but left out family care and ICFs in their presentation. OCFS identified children who reside in institutional settings but provided no data regarding those who seek a more integrated setting. OMH only provided data regarding state hospital census reductions and omitted the numbers of New Yorkers with psychiatric disabilities who reside in adult homes and homeless shelters. Further, OMH went on to publicly acknowledge that it was "not currently able to calculate the number of individuals who are institutionalized and who are eligible for services in community based settings."

As regards to our mandate to identify community services that help New Yorkers with disabilities to avoid institutionalization,

· OCFS provided solely the numbers of children who reside in ALP programs.

· OMRDD provided specific numbers of individuals with developmental disabilities who receive specified supports and services in the community.

· SOFA provided data that related solely to those who received 'Expanded In-Home Services for the Elderly.'

· OMH acknowledged that it was "not currently able to precisely calculate the number of individuals residing in the community who are dependent on the assistance of community based services to avoid institutionalization." It pointed to over 670,000 who received community services but did not isolate the numbers of those who have more serious psychiatric disabilities. It referred to numbers of individuals who apparently were receiving community housing supports, but referred to community support services without further details. The report referred to an OMH 'Appendix 6' that was missing.

With regards to identifying 'necessary improvements' on data collection:

· DOH pointed to a model employed by the Governor's Health Care Reform Working Group that holds promise.

· OCFS pointed to its Child Care Review System but acknowledged that 'children with disabilities are not identified discretely.'

· OMRDD referred to its TABS system that provides 'information (that) is on-line and "real time" allowing for immediate analysis which OMRDD uses in day-to-day community service management and policy planning.

· SOFA acknowledged that 'there needs to be more and better use of computer technology' but felt that efforts to improve data collection was 'a critical but challenging undertaking that will take significant time and effort' in an environment where existing resources are 'stretched to the limit.'

· OMH referred to its Residential Program Indicators Report and its very promising CAIRS system. It also referred to extensive data that is collected at the local level (via Single Point of Access procedures) but that is currently not collected and presentable as statewide data.

With regards to looking at disability-specific waiting list data, the report strongly stated that it would be a mistake to only create lists for those waiting for agency-supported housing, but then acknowledged that 'maintaining a waiting list for community housing options is complex when government does not control access to most private housing providers.' Later, the report referred to Wisconsin's Supported Housing Specialist model that focuses on identifying 'affordable housing, rather than finding housing for people with disabilities.'

This report also minimized the importance of waiting lists, instead preferring the development of a 'highly effective, locally responsive system (that) has the potential to address needs with the best available resources.

With more specific regard to waiting list collection:

· DOH affirmed it did 'not have any experience to offer on the creation, methodology, utilization and monitoring of waiting lists.'

· OCFS does not collect waiting list data but thought such a list would be 'useful.'

· OMH rejected the notion of a state-maintained waiting list because such a list 'could not possibly provide a clear, in-time, localized picture of what specific resources every mentally ill individual in the State may need at any given time.'

· OMRDD keeps a NYS Cares waiting list to ensure efficient use of the 500 statewide opportunities. There are 5,625 people on the NYS-CARES waiting list, with over 90% of the people on the list receiving a community-based service while they wait. OMRDD conducts an ongoing 'person-by-person survey to validate the list by 'telephoning the person requesting a residential opportunity or their designated family member or friend.' Their waiting list 'includes only individuals who have confirmed their need for a new home, qualify for OMRDD services and want a residential opportunity within the next two years.' Since the inception of NYS-CARES, OMRDD has addressed its waiting list in 'reasonable timeframes,' with over one hundred residential opportunities being created each month.

· SOFA's Area Agencies on Aging (AAA) may (but are not required to) maintain waiting lists for home care services and home delivered meals, social adult day services or personal emergency response systems, case management services and transportation services. 'From time to time NYSOFA has collected information from Area Agencies regarding their waiting lists for a few services. We have not done this in many years.'

Transportation
This group found that "not-for-profit service could be more efficient and effective if there was more support and coordination from the local public transportation system." It went, however, to point out that 'the committee recommendations relating to Public transit operators are advisory rather than mandatory.' The report provides detailed numbers of those New Yorkers with disabilities who rely on federal, state and locally funded transportation services. It provided an index of state-agency sponsored transportation, with the exception of OMH.

We talked a lot about a goal of reducing the significant duplication of non-profit agency-sponsored transportation (trying to avoid several disability-specific van services going down the same remote road to pick up one person). However, non-profits are not subject to state DOT regulations and 'participation in a coordinated system' would be considered 'onerous by the agencies' who tended to exhibit 'turfism.' The report goes on to say that 'if the vehicles must be turned over to another operator to attain coordinated service these agencies become less inclined to coordinate. The opportunity for coordination that presents itself here can come about if it can be demonstrated that sufficient savings or a maintained or improved level of service can be accomplished.'

Other barriers were found in that 'a client of a particular human service agency may not want to ride on a vehicle identified with markings of another human service agency' and that 'many public transit services cut back on the provision of service on nights, weekends, and holidays.'

As of now, our recommendations do not address these barriers.

Quality Assurance (How Well Do Services Work)
While this group identified some very promising principles and guidelines as to how New York can best evaluate the efficacy of disability services, it acknowledged that much more work remains to be done. This report recommends that the MISCC 'direct state agencies to integrate the quality assurance principles and guidelines identified by the QA/I Committee into their existing evaluation process' and called for the establishment of 'a workgroup or task force that will evaluate the feasibility of developing model quality assurance instruments that could be applied statewide.'

Community Services
While acknowledging and demonstrating that there is a broad array of community services currently offered to New Yorkers with disabilities, the report acknowledges that 'gaps in information about services and access do exist.' We recommend here that public and private agencies develop ongoing processes towards 'evaluate existing and new services and supports to assure that services and supports are developed in accordance with MISCC principles and guidelines. These processes must include the implementation of mechanisms to assure meaningful opportunities for ongoing participation of consumers, providers, advocates and local government in evaluation and planning processes.' Points of entry/access to services should be developed and discharge planning should be improved.

Assessment
This group's mandate is to 'identify current assessment procedures used to identify individuals who could benefit from services in a more integrated setting' and to 'describe shortcomings in assessment tools and how they are implemented.' It highlighted SOFA's Discharge Planning Workshop initiative, a joint pilot initiative that has brought together SOFA, DOH, DDPC and the state's independent living centers to help people transition out of nursing homes, OMRDD's collaboration with the Self-Advocates to help assess and support ICF residents to move to more integrated settings, OMH's 'Coalition to Promote Community-Based Care" and Single Point of Access initiatives.

The report recommended that the MISCC 'put in place, in each county, a community-based agency capable of carrying out assessment procedures to identify individuals who could benefit from services in a more integrated setting', while adding that 'other entities should not be prohibited from carrying out assessments.'

As you can see, the MISCC has considerable work to do to issue a first report that moves us much more credibly towards our ultimate goals. We must extend the time given to us to complete our first report, and we must have firm assurances that the Council will continue its work in order to meet our mandate, according to the state's mission and the law.


Back To Top