NYSILC Full Council Meeting

March 18th, 2005
9:00 a.m. - 3:00 p.m.
Holiday Inn Turf
205 Wolf Road
Albany, New York
(518) 458 - 7250

Attendees:
Doug Hovey (Chair), Mel Tanzman (Vice-Chair), Mike Godino (Treasurer), Alexander Wood (Secretary), Sharon Shapiro (Member-at-Large), Bob Gumson (VESID ex officio), Sharon Flom (CBVH ex officio), Greg Jones (OAPWD ex officio), Edith Prentiss, Christine Zachmeyer, Marguerite Haring, Bob Gaffney, Mark Hernandez, Paige Macdonald, Randy Black-Shantz, Eugene Hughes, Steve Lovi, Christina Curry, and Dennis Boyd. Staff: Brad Williams (NYSILC executive director). Public: Tracie Crandell, Denise Figueroa and Melanie Shaw.

Open Forum:
The Chair introduced the new council members appointed to three-year terms: Bob Gaffney from Rye Brook, Paige Macdonald from Slingerlands, Edith Prentiss from New York City, Sherry Taub from Greenlawn (not present), Christine Zackmyer from Oneonta, Debbie Cooper from Irving (not present), and Christina Curry from Harlem. In addition, Sharon Shapiro from New York City was reappointed to another three-year term. The remaining council members took turns to introduce themselves for the benefit of the new members.

The Chair then announced the resignations of two members - Amy LaShomb and Mike Zich. The Chair read Amy LaShomb's letter:

Dear Brad and Council members,

Due to the fact that so much has changed in my personal and professional life over the past five years, I'm afraid I cannot make the next council meeting and possibly others in 2005. I feel that the most fair approach would be to resign my position on the council, being a part of the council will always be one of the most memorable and positive experiences I've had in my life and I will truly miss it. I've met so many wonderful people with a common goal that kept me going through many rough days being the parent of a young man with autism. Thank you for your commitment to people with disabilities in New York and thank you for allowing me to serve on the council.

Sincerely,

Amy LaShomb

Michael Zich wrote the following:

To my colleagues and NYSILC,

It is with great sadness and regret, I must tender my resignation at this time from this highly respected council. Due to ill health, I could not participate in the November 2004 meeting and currently health issues again preclude me from participating in the March 2005 meeting as I will be undergoing surgery. So I would have to miss the May meeting as well. However, due to the nature of my illness and the upcoming surgery I am not be able to attend. Had I been aware of the upcoming health issues, I would not have submitted my name for this appointment. My apologies to all involved, it has been a great honor to be of service. Hopefully after May, my health will stabilize and I could have enjoyed participating. However, I will have missed three meetings in a row and do not want to deny anyone else the opportunity to serve here in the system for Independence for people with disabilities. If you have any questions or concerns, please contact me at your earliest convenience.

Michael Zich

The Chair acknowledged that he talked directly to Michael and encouraged him to consider continuing to serve in the capacity of a subcommittee member.

Last, the chair announced some disappointing news. Over the past several weeks, the executive committee met regularly to support the executive director during a very difficult time. A tough decision was made to discontinue the employment of the former office manager. The chair asked the council to respect and support the decision. No details were necessary since it was a personnel matter.

Minutes, September 10, 2004 and November 19, 2004

The Chair asked if everyone had read the minutes to the NYSILC full council meetings held on September 10, 2004 and November 19, 2004. Without any comments, the Chair asked for a motion to accept the minutes as read. The motion was called and seconded. All were in favor. Minutes approved.

Steve Lovi informed the group that he and Sharon Shapiro were going to distribute the hand-held microphones. The Chair noted that members needed to raise their hand if they had a question. When recognized, the member must use the microphone. Mel Tanzman also wanted to make sure that there was a quorum present. Fifteen voting members were at the meeting, which exceeded the quorum number by three. Thus, a quorum was present.

Executive Director’s Report: Brad Williams reporting.

The executive director gave his report for the months of October through December 2004. He also highlighted two recent items. The first item was the announcement of a Region I Conference in Worcester, MA in late August 2005. NYSILC, through its IL NET grant, is set to sponsor the conference as a way to support training and have the opportunity to meet CIL, SILC, and DSU representatives from Region I, which consists of six New England states. Under the IL NET grant, NYSILC provides support to Regions I and II.

Second, the Chair, executive director and former office manager attended the SILC congress in Phoenix, Arizona. Everyone felt the event was successful. One panel discussion featured youth leaders from across the country. The input gave feedback on how to best include youth involvement on our council. Another session gave attendees ideas on how other states are structuring statewide disability caucuses. The executive director reminded the council that one or two members should take advantage of an invitation to attend the Kansas Caucus in early August 2005. Mike Godino and Doug Hovey indicated interest in attending the event. The Chair added that a third session talked about a statewide council's role in disability evacuation planning. NYSILC should consider setting up a subcommittee to address this issue at some point in the future.

The executive director informed the council that NYSILC completed and submitted its annual 704 report to the federal government at the end of December 2004. Time was taken to outline some of the more prominent projects on the new Statewide Plan for Independent Living (SPIL) for 2005-2007. The statewide consumer satisfaction survey was in progress, which is a requirement every two years. Other projects discussed included strategic fund development with Richard Male & Associates, and the Housing Institute.

Last, the executive director made council members aware of two reports recently issued by NYSILC. One described voter discrimination complaints for Election Day 2004 and Zogby post-election polling results for people with disabilities. Both are available on the NYSILC website for review.

Treasurer’s Report:
The Chair noted that a financial report was not available in time for the meeting packet. It was the responsibility of the former office manager. The report will be added to the packet for the next council meeting scheduled in May 2005.

Executive Committee Report

The Chair asked the Vice-Chair to give the Executive Committee report. The motion was made, seconded, and approved to go into executive session for the report.

After the report, a lengthy discussion ensued to help explain the roles and recent cooperative efforts between NYSILC, the new state association - New York Association on Independent Living (NYAIL), and VESID.

Committee Reports:

• Public Policy Committee:
  The Chair took privilege to discuss a recent subcommittee report first before the other public policy discussions on the agenda.
• Mental Health Subcommittee:
  The Chair announced that the Mental Health Subcommittee met for the first time the day before. Barb Knowlen, a SSAN network coordinator from Utica, facilitated the call. The call had a strong base of participants: Ron Bassman and Darby Penny (a former and new council member), Liz Patience (systems advocate from Watertown), and Melanie Shaw (NYAIL). Parent's rights issues were discussed, especially related to losing custody rights to children. Other big issues related to forced treatment, institutionalization and stigma. The subcommittee also expressed interest in holding three public hearings across the state (Albany, Syracuse and Buffalo) to encourage input. Advocates are in the process of organizing for the New York City public forum to repeal assisted outpatient treatment.
  
  Edith Prentice was interested in obtaining more information about the public hearing in New York City. Members questioned the need for three NYSILC mental health statewide hearings if advocates were gearing up for the public forum. Some members explained the fear of reprisal for public comments against Kendra's Law (forced treatment). The Chair explained how NYSILC does have discretionary meeting funds each year to respond to needs such as this one. NYSILC has typically moved forward in the past, when possible, and submitted the collective information for public benefit. The Chair offered members the opportunity to approve of the statewide forums in the form of a motion if so needed. No one responded. A few members questioned how the process worked for making a decision on an issue like Timothy's Law (mental health parity). NYSILC looks to each subcommittee to debate and reach consensus on key issues, especially when timing is crucial. The full council would then mostly support the subcommittee's decisions. However, the full council could challenge any position, encourage debate, and then take a final vote on the issue and position. Bob Gumson felt that the full council could vote and take a position on Kendra's Law that could serve the dual purpose of opposing the issue and help provide guidance for the subcommittee. It was pointed out that the council has already stated publicly for years that they oppose Kendra's Law and support mental health parity (Timothy's Law is identified in the new Disability Caucus Agenda). As a result, Bob Gumson made a motion to have NYSILC go on record as opposing the renewal of Kendra's Law. Paige Macdonald seconded the motion. All approved.
• Public Policy Committee Report:
  The executive director gave the Public Policy Committee Report. He explained that the minutes were in the packet and outlined the general purpose of the committee, which is made up of the chairs or co-chairs of the different public policy subcommittees. The committee meets once a quarter. The executive director acknowledged significant activity on a variety of issues, but stated that the details would be presented in the different subcommittee reports.
  
  For the benefit of new council members, it was reiterated that NYSILC's public policy committee is set up to address emerging policy needs, like travel, and provide a forum for the council to discuss and take positions on issues. By October 2005, NYSILC's public policy subcommittees will be transitioning over to the NYAIL. This move is required to secure direction of public policy issues and advocacy action alerts in the control of NYAIL, which has the new responsibility of the Statewide Systems Advocacy Network (SSAN). NYSILC is changing its focus more toward reports, surveys, research, etc. and greater council participation on major SPIL projects (deliverables). The executive director cited the example of NYSILC's obligation to conduct a statewide consumer satisfaction in years one and three. Year one is in progress and close to completion. The new subcommittee would have the opportunity to review the survey and results, consider changes, and help support the project in year three.
• ADA Committee
  The ADA Committee did not submit a report for inclusion into the packet..
• Election Reform Committee:
  Christine Zachmeyer, Sharon Shapiro and Mike Godino gave sections of the report. There was significant activity on the Help America Vote Act (HAVA) since the last meeting. New York State has put itself into an embarrassing situation related to HAVA implementation. It is the only state left that has no clear direction, including enabling legislation, to be compliant by January 1, 2006. New York has left itself and the counties limited time to ensure that ballots, voting machines, and polling places are accessible by this date. A discussion ensued about the legislation introduced to date by the Assembly. A basic polling place access bill that ensures the accessibility of all sites under the ADA and HAVA was introduced and passed by the Assembly in January 2005. It also eliminated ALL waiver language. The Assembly is in the process of drafting its voting machine bill. They have our input based on the work solicited by Kim Hill at the Assembly Task Force on People with Disabilities. The Senate had yet to introduce any bills specifically related to voting access.
  
  A question was raised about NYSILC voting to endorse optical scan technology. Automark, an optical scan voting machine company, has been aggressively seeking such endorsements. Members of the group explained that while Automark (optical scan) had features that made it accessible and desirable to some members of our community, it also presented barriers to colleagues with reach and dexterity needs. As a result, NYSILC does not want to endorse a product that is not fully accessible. Another discussion occurred that highlighted how other national disability groups had experienced a backlash when they endorsed a product that wasn't fully accessible in return for money. It was agreed that NYSILC should only endorse a machine if it is fully accessible. There should be no financial compensation in return. In reality, this probably meant that NYSILC would not endorse a machine before the end of session. Instead, NYSILC should continue to push the accessible features that must be included in all new voting machines.
• CDPANYS (Consumer Directed Personal Assistance in New York State):
  The Chair gave the CDPAS report. After a brief history of the Consumer Directed Personal Attendant Services (CDPAS) program, the Chair reiterated that New York State has yet to promulgate regulations for the program in its ten-year existence. A set of draft regulations was circulated a few years ago, which solicited public comment. However, nobody has seen the draft since. There is a fear that the proposed regulations have been weakened and fail to uphold the original intent of the program. Another concern was expressed related to a DOL determination making attendants exempt from time and a half overtime pay so long as all hours were paid time and a half of minimum wage. This appears to be overruled by a recent court decision. All of this only adds to the confusion and makes it harder for providers to support the program and consumers to pay and retain qualified attendants.
  
  In addition, the Vice-Chair noted the release of a national report that does not make the program's growth any easier. It criticizes the consumer directed program for not providing adequate oversight and training in terms of the workers, implying fraud and poorly trained workers. The Chair took time to inform attendees that the CDPAS program does have a state association that meets regularly to address these issues. The CDPAS state association has its annual conference next month. Bob Gumson (VESID) put the issue in context by referring to the budgetary commitments to the state CDPAS program $120 million versus the large home care provider industry $1.7 billion dollars.
• Housing Committee:
  The Secretary gave the report. Reference was made to the Governor's new "Access to Home" program announced in his "state-of-the-state" address. It distributes up to $2,000 to non-profits to be distributed for home modifications. A recent meeting held by DHCR helped to define the program. One major concern is that it does not allow for administrative costs. So, it is purely a "pass through" program at this point. Agencies will have to decide if it is feasible to support. More details would be forthcoming. The subcommittee also believes that visitability is a good thing to have on the statewide agenda. The Secretary explained that visitability is a law that would require public areas related to any newly constructed housing to be made "visitable" to a person in a wheelchair. Reference was made to how a staff person for the Manhattan Borough President stated that affordable housing was the number one issue on the table for them. Some members of the subcommittee will look into the NY City Mayor's new marketplace project, which looks to build 55,000 affordable units over the next five years. Nothing was said in any materials or discussions to date about how many will be affordable and accessible.
  
  A member noted that they supported the concept of visitability, but wondered if it would be better to focus on overall accessibility? It would be great to visit at someone else's house, maybe even stay overnight, but they also want to make sure they had affordable and accessible housing to live in. The executive director took some time to delineate the differences between the Housing Subcommittee and the Housing Institute. The Housing Institute is designed to support the priorities in the Housing Subcommittee's position paper, "Home Sweet Home…Unless You Don't Have One." It is available for review on the NYSILC homepage, www.nysilc.org. The Treasurer added that he participated in a Housing Institute brokering session yesterday at the NYSILC office. The group is working with Kim Hill at the Assembly to provide draft legislation related to a housing trust fund, Section 504 compliance, a statewide housing registry, and income discrimination.
• Most Integrated Setting(CTIONY Steering Committee):
  The Vice-Chair gave the report. Reference was made to the significant amount of time being used to work on how housing blends with transition and diversion at this point. The Vice-Chair felt that advocates would eventually need some sort of a housing subsidy similar to what has been established for the Traumatic Brain Injury (TBI) waiver. Such a housing subsidy would be critical to our success in helping people get out of institutions. It's too early to say or tell whether the Medicaid waiver will benefit getting people into a more integrated setting or if it will have little loopholes.
  
  Paige Macdonald noted how she talked to Mel about the development of the most-integrated setting council. Children' issues were de-prioritized, which affects children, especially with mental health needs. One of the primary health options for children is a residential out-of-state placement. This does not seem consistent with the "most-integrated setting." Thus, we need to understand and make sure that Olmstead also applies to our children. The Vice-Chair agreed and added that it also applied to the more chronically ill, whose needs are unmet; they end up in homes.
• Transportation Subcommittee & Travel Subcommittee Reports:
  Randy Black-Shantz gave the reports. For the Transportation Subcommittee, Randy noted how the group really began to be productive when presented with specific projects over the past year. A survey tool was developed and initial data was collected on transportation issues from across the state. The subcommittee also drafted a "dream bill," provided significant testimony at twelve NYS DOT public hearings over a three-month time period, and is close to completion of its position paper, "WHERE THE RUBBER FAILS TO MEET THE ROAD." This paper addresses the negative impact transportation gaps have on the life of New Yorkers with disabilities and recommends reform. Randy asked the executive director for feedback on what the subcommittee should do when the position paper is completed. When a final product is agreed to, it will be posted on the NYSILC website for easy reference and access, www.nysilc.org. The subcommittee should then look to create a distribution plan for the paper. The Transportation Subcommittee could then work with NYSILC's media consultant, Howard Schaffer Media Marketing, to create a press release and possible press event to publicize the position paper. If needed, and agreed to by the SSAN, then an action alert could go out for a local "letter to the editor" campaign with a sample 150 word article. Advocates would attempt to increase exposure to the document and issues in secondary markets.
  
  or the Travel Subcommittee, Randy referred to the travel brochure included in the NYSILC full council meeting packet entitled, "Reservation Checklist for Persons with Disabilities." It was designed to educate and promote a positive experience when using hotel and motel accommodations. The group was rightfully proud of their positive achievement. The executive director took the time to recognize Randy Black-Schantz for her leadership efforts on both subcommittees. Her direction has increased the productivity of both groups. The rest of the council applauded her efforts.
• Inclusive Education Subcommittee Report:
  INo report was submitted. The group is looking to establish a consistent meeting time. A discussion continued about how to best involve youth with council activities. Several people noted that NYSILC should attempt to see how it could support their activities. The Chair reminded members about the National Leadership Academy (NLA) website as a start.

New Business
Discussion returned to the establishment of an Emergency Evacuation and Preparedness Subcommittee. A motion was made and seconded to create such a subcommittee. One member wondered why the council was acting so fast when they had to go through a more rigorous process to establish a subcommittee. The Mental Health Subcommittee appeared to be pushed through in a similar manner. Shouldn't the mental health and emergency evacuation and preparedness subcommittees have to develop mission statements and goals? The Chair reassured members that despite appearances, the council has considered a mental health subcommittee for years. It merely lacked a core group and chair. Based on the SILC Congress, it is also clear that New York needs to be more proactive on the emergency evacuation and preparedness issue. A member wondered if NYSILC should be creating so many committees if they are going to be handed over to NYAIL. It was explained that only the public policy subcommittees were going over to NYAIL. NYSILC would continue to have a Public Policy Committee to discuss and take positions on issues when needed. Moreover, NYSILC would continue to develop subcommittees for emerging needs, such as the Travel Subcommittee, which will stay with NYSILC. The new subcommittee proposed for emergency evacuation and preparedness would therefore be considered an emerging need. The question was called on the motion. The Chair repeated the motion. It was second by the Treasurer. The motion was approved.

Members discussed sign up for committees. It was agreed that sign up would be addressed at the next meeting when the executive director has had time to pull together descriptions of each committee/subcommittee and verify current members.

A motion was made to adjourn. All approved.