NYSILC Full Council Meeting

March 21, 2003

Attendees: Maria Dibble, Chair; Doug Hovey, Vice-Chair; Frieda Zames, Member-at-Large; Judy Avner, Randy Black-Schantz, Dennis Boyd, Joe Bravo, Michael Burgess, Mike Godino, Marguerite Haring, Mark Hernandez, Michael Kink, Steve Lovi, Rosemarie McCaffery, Sharon Shapiro-Lacks, Mel Tanzman, Alex Wood, Ron Bassman; Sharon Flom; Bob Gumson; Greg Jones; Brad Williams, Stephanie Slater.

Absent: Amy LaShomb, Secretary; Iris Banister, Victor Pagano, M.G. Power, Anne Marie Vadney.

Guests: Aileen Martin, Tracie Crandell, Denise Figueroa, Tom McKeown, Bob Shepherd.

Open Forum: Frieda Zames announced that her book is now in the Libraries for the Blind, nationwide. Alex Wood announced that the Disabilities Network of NYC just passed its first anniversary on 3/13/2003. Materials about Disabilities Network and their primary goals for this year are available. Dennis Boyd announced that there will be two HAVA (Help America Vote Act) public hearings, in NYC on 4/4 at 12:00 pm, Assembly Hearing Room, 250 Broadway, Room 1923 and then in Albany, 4/14 at 9:30 am, Roosevelt Hearing Room C, 2^nd Floor of the L.O.B. (Legislative Office Building). Bob Shepherd announced that there will be a march on 5/3, "March for Public Education," more information can be found on the website at www.marchforpubliceducation.org.

Minutes, September 2002 were left out of the packets. Vote tabled until the May meeting.

Executive Director’s Report: Brad Williams reporting.

• December 2002 – 704 Report submitted to VESID.
• December 2002 - Process begun for a Fall 2003 Independent Living Conference, September 23-24-25 here at the Holiday Inn Turf. A steering committee has been assembled to begin working on this conference.
• December 2002 – Brad presented with Patricia Yeager (CA Foundation on IL) for training in NJ on systems advocacy. NJ is trying to move forward o their systems advocacy efforts.
• January 2003 – Brad and Stephanie attended the SILC Congress 2003. Brad presented on a SILC’s role in Media Advocacy.
• January 2003 – NYSILC was notified by ILRU (Independent Living Resource Utilization) out of Texas, who received a Federal contract for Technical Assistance and Training, that NYSILC was awarded a subcontract for $60,000 to do the liaison work for Regions I and II. A job description will be out shortly for that position.
• February 2003 – The pace has been hectic. February has been "hearing" month. Many people have participated in all the hearings, giving testimony in person and in writing.
• March 2003 – Substantial numbers were turned out for the Human Services hearings to address other key issues to our network and our partners (stopping the SSI COLA raid, implementation of MBI, etc.).
• March 2003 – HAVA (Help American Vote Act). A great deal of work has been done on this issue in NYS. NYS is to receive $261 million of this Federal Election Reform to modernize its voting machines and verifying accessibility of polling places, poll worker training, along with public education campaigns.

Treasurer’s Report: Stephanie Slater reporting. Presented four months of financial reports; travel expenses have eased, credit in December is for out-of-state travel done by Brad in previous fiscal year, reimbursement was not received in time to apply to last year. Explanation offered of line items that are unique to NYSILC (Customer Satisfaction Survey, IL History and Philosophy CD Rom Product. "Sponsorships" were questioned, identification of exact expenses will be emailed to Council members. No funds were allocated to this category.

Motion by Joe Bravo, second by Alex Wood, to accept the Treasurer’s report as presented. Motion passed unanimously.

Executive Committee Report – D. Hovey reporting.

• VESID reimbursement delays were discussed. It was stated that NYSILC’s $100,000 unsecured Line of Credit is "maxed" out. NYSILC’s contract was submitted in May of 2002; it was lost, and on the last Friday in September 2002 a call came in requesting an explanation for why NYSILC hadn’t submitted its contract. Copies were again taken over to VESID. After 4 weeks, VESID still had not submitted NYSILC’s advance voucher. Advance funds were finally received in early December. DOB directive shouldn’t affect Title VII Part B money, tough to get DOB to realize this. Larry Gloeckler is assisting us on this matter.
• Funds are due in shortly on the Federal ILRU subcontract, $30,000.
• Term Limits/Expirations – Three member terms expire 12/31/2003; two are renewable, 1 vacancy will exist. In 2004, 8 member terms expire on 12/31/2004; 6 are renewable, 2 vacancies will exist; and finally, in 2005, 10 member terms expire 12/31/2005, and only 6 are renewable. Term Limit issues have been corrected and letters were sent out by VESID.
• Youth representation was inquired about. NYSILC did have a "youth" representative selected to be appointed to the Council, until he accepted a position with NCIL. Diversity among board members was also addressed. Request made for Recruitment Committee to address this matter. Chair of the Recruitment Committee – Victor Pagano, Steve Lovi volunteered to Co-Chair with Victor. Steve Lovi suggested a mentoring option for the Statewide conference in the Fall.
• Elections for the Executive Committee will take place at the September meeting. Nominations can be sent to Brad or Stephanie.
• Executive Director’s performance review was completed. Brad has scored excellent once again in all areas of performance.

Committee Reports:

• Many things have been happening in NYS. Two committees appear to be struggling at this time. Inclusive Education Committee has never met and its leadership needs attention as IDEA is up for reauthorization. The second committee, the Housing Committee, appears to have some leadership issues. Need to look at the possibility of a co-chair for this committee.
• Public Policy Committee: Mel Tanzman reporting. This remains very active. ADA Committee did not submit its minutes. ADA Committee is an Advisory Committee of NYSILC’s Public Policy Committee.
• Inclusive Education: No report available.
• Most Integrated Setting: Mel Tanzman reporting. The MIS Committee and proposed appointments to this committee were discussed. To date, no one has been appointed. It is recommended that follow-up be made to Assemblyman Cahill’s office regarding this Committee. The Committee to Implement Olmstead in New York (CTIONY) has a policy paper; its an extensive piece that deals with all issues related to getting people out of nursing homes, including some housing issues. The paper is available on the Coalition for Aging website, www.coalitionforaging.org. People are able to sign on to this document at the website as well.
• CDPANYS (Consumer Directed Personal Assistance in New York State): Doug Hovey reporting. This group is growing strong with over 40 organizations as members. Conference #2 is being planned. On 4/9 the Annual Meeting will be held in Albany. This is another Advisory Committee of NYSILC’s Public Policy.
• Housing Committee: Mel Tanzman reporting. Meeting minutes were included in the packet and read aloud. Building Codes Council will be looking at existing structures and accessibility requirements. NYS is looking into developing a Housing Registry much along the lines of what Massachusetts has developed.
• Election Reform Committee: Sharon Shapiro-Lacks reporting. Written reports were not submitted in time to include in packets. This committee has been extremely active. Several events/activities have taken place. In January, several committee members attended the Election Committee Association Conference to talk about HAVA (Help America Vote Act) and disability awareness. Dennis Boyd spoke regarding polling place accessibility, HAVA, and people with disabilities’ rights as far as voting. Lisa Hoffman enlightened the conference attendees on personal experiences of people with disabilities attempting to vote. New voting machines vendors were present at this conference. Voting technology has been looked at in NYC, CIDNY and the Manhattan Borough President sponsored a survey of new voting technology. The report will be out within the next week or so. The HAVA Task Force has identified some objectives that must be included in any outcome. The full-face ballot issue was discussed. The goal is for people with disabilities to be able to go into the polls on Election Day 2004 and find at least one accessible voting machine. Deadlines for purchasing machines are being discussed, as well as the testing of any new systems. NYS Election laws and the need for changes were discussed. The State Plan for HAVA was discussed as well as the process for developing a State Plan (public comment gathering), poll worker training, verifying accessibility, public education campaigns, etc. Letters restating our expectations will be written, then stating concerns with the process in terms of having a vote on the State Plan, and then being in existence after the Plan goes to the Feds and making sure that requirements happen. A follow-up meeting needs to be had with Peter Kozinski just as protocol. Tell him that we will take our concerns further, i.e. to the public, to the funder itself (the Feds.) and/or work with other groups and take this to a lawsuit.
• Transportation Committee: Frieda Zames reporting. The committee has discussed presenting a State Transportation bill to include State safe access to/from modes of transportation, the education of drivers and service personnel regarding use of accessibility equipment and sensitivity training, expansion of services to door-to-door for those medically eligible, evening and weekend coverage for bus or Para transit, expansion of rural routes with services subsidized to make rural transports a financially feasible option, use of consumers on how to do things properly. Issues addressed: bus transit-lifts and routes, major-major problem, subway stations-not accessible-GAP problem, elevators, auditory announcements of stops on trains and buses, trains-concern about the fact that Amtrak does not secure scooters or wheelchairs to the train, communication to assure that the train stops at an accessible location, ferries-attempt to make an accessible ferry bill, accessible taxis are still needed throughout the state.

Committee Chair/Co-Chair Appointments:

Public Policy – Mel Tanzman

Election Reform – Sharon Shapiro-Lacks/Chris Zachmeyer

CDPANY – Doug Hovey

Inclusive Education – Rosemarie McCaffery

MIS – Mel Tanzman

Housing – MG Power/Alex Wood

Transportation – Frieda Zames

Personnel – Steve Lovi

State Plan – Joe Bravo

Healthcare – (Ask Frieda or Michael Kink.).

VESID Report – Bob Gumson reporting.

• High stakes policy discussion held between NYSILC, AILCNY, COIL, and State Education Dept. directly with Commission Mills and Deputy Commissioner Gloeckler, Assistant Commissioner McLane and myself. Brad helped to broker this meeting; other attendees included Aileen-Watertown, Burt-Utica, and Denise-Troy. The three major issues discussed that day were: (1) long term strategy to address the inadequacy of IL funding; issues discussed included terms of expansion of the network and looking at the future expansion into unserved and underserved areas. (2) Transition and the role and involvement and school age youth and working with school systems and districts, expanding on the models that have already been funded with IDEA money. (3) Dialogue to open on the role SED would play when it begins to take part in the Most Integrated Setting Council, Commissioner Mills will be the State Education representative. No conclusions were drawn on any of these issues. However, each was elevated to "Commission level" and he demonstrated his support, agreement was reached to met again in July with concrete recommendations.
• VESID will be holding on 4/8 the first of a series of Mental Health and ILC Advocacy forums, brining together the power of both of the groups. The 4/8 meeting will be a facilitated dialogue with 9 ILCs brining some 20-25 key staff and 20 mental health advocates from the Central New York region. We hope to replicate this in other parts of the state at a later date.
• VESID has selected the six applicants for the Nursing Home Starter Grant Transition Project to get people out of nursing homes. VESID, DOH, Office for Aging and DDPC worked on this review process. The six projects will have a preliminary meeting shortly.
• The Independent Living Services Unit in VESID has been a part of the Life Long Services Network within VESID; a recent reorganization means that we have been moved to Assistant Commissioner McLane’s office.

CBVH Report – Sharon Flom reporting. CBVH is in support of the move to Department of Labor, despite state level opposition to the same. CBVH will be holding public hearings/Town Meetings to gather input regarding this move. Sharon has made documentation on CBVH goals available.

New Business/Open Forum: Michael Burgess addressed the issue of prescription drug costs and Americans crossing into Canada to purchase drugs. A list of Glaxo-Smith Klein products to boycott was provided. Nationwide attention has been drawn to this matter.

Bob Shepherd reported on the status of the Consumer Satisfaction Survey. The surveys went out last fall, approximately 12,500 for each center. In 2000, 10,000 surveys were sent out with a 15% return rate, this year it’s around 17%. Bob read aloud each question on the survey. Individual analysis for each ILC have not yet been done. Consumer comments will be sent to ILCs to make certain replies are about ILCs not VESID or VESID Counselors.

Michael Kink spoke about President Bush’s Medicaid Block Grant. This is viewed as a serious threat to Medicaid and funding for healthcare for people with disabilities. Bush’s plan proposes two options for states, (1) a cap on Federal financial participation, not the open ended option that is in place now; and (2) to take Medicaid in the form of a "Block Grant." This would give the State’s current levels of Medicaid funding and release them from a broad range of requirements that are associated with legal entitlement status. The State’s would be able to eliminate optional populations and optional services, i.e. they could eliminate pharmaceuticals or entire categories of individuals. Other financial changes were highlighted. There is a $12.7 billion bonus pool for State’s that chose the "Block Grant" option, each state that participates would receive a pro rated share of the bonus pool in years 1-7, and then payback that bonus amount in years 8-10. Another important aspect of the plan is the ability to eliminate services, i.e. prescription drugs, physical therapy, outpatient services, case management, etc., these are all optional benefits. A handful of governors have supported this "Block Grant," Pataki hasn’t come out very strongly against this. "He seems to be sucking up to the Bush people, Governor Bush in Florida and President Bush in Washington and his political future, versus knowing how important Medicaid funding stability is for New York, Kink said. The House budget supports this "Block Grant" program; the Senate has made a final decision.

Joe Bravo stated he heard there is new Federal money for the Federal ILCs and NYSILC. Brad stated that as it stands President Bush has approved a $6-$7 million increase to the Title VII, Part C appropriation. RSA will send out paperwork later this week. As it stands, each Federal ILC will receive a COLA (cost of living adjustment), in the ballpark of 2%, and then something around $400,000. The $200,000 base level will be used for the ILCs with the balance divided equally among the remaining ILCs. This does not include Part B funds, just Part C. Part B has not received a COLA in many years. The Part C money is for the Federal ILCs only; NYSILC gets nothing out of this pot. Part B funds are used for NYSILC. The State Plan committee will need to re-examine this for the next three-year State Plan.

Mike Godino brought to the attention of NYSILC some of the ramifications of the move of CBVH to DOL. He asked that NYSILC oppose this move. CBVH provides services to blind people from age 3 until death; Dept. of Labor does not provide services to anyone under the age of 14 yrs. old. People 55 yrs. old who are considered non-VR would go to the Office of the Aging. CBVH would then only provide services to people between 14-55. Office of the Aging does not provide services and would therefore have to train people to service people who are blind.

Mike Godino attended the Sutton hearings; the experience was good for all who participated. The Senate Judiciary hearing was slated to be held in a small hearing room on the second floor, when larger hearing rooms were available. The group gathered in the hallway to chant and protest, which resulted in them being told they would receive three warnings then be arrested. Bob Dole was approached and as a person with a disability, asked that the hearing be moved to a larger room to accommodate attendees, which was done, and then declined to present Mr. Sutton as was originally planned. More activities are planned to oppose the Sutton nomination.

Ron Bassman stated that the Office of Mental Health is struggling with the budget situation in NY. Continuation of services is in question. Many services may have to be put into Medicaid to survive. The Medicaid government regulations will then dictate how services are provided. The "peer driven" organizations would be "left out in the cold." Hospitals will be closed; research units will be combined. Services will be combined or eliminated.

Mike Kink suggested another area for advocacy work, Federal Welfare Reform and Reauthorization of TANF (Temporary Assistance for Needy Families) and Federal Welfare Reform Laws of Personal Responsibility and Work Opportunities Act.

Alex Wood mentioned that one of the priorities of the Disabilities Network of NY is to work on the inclusion of youth with disabilities in summer employment programs. Working with Department of Employment and the Commissioner of Employment in NYC. TANF Funds were available last year for this program. 5.6% of 40,000 students were youth with disabilities; 10% was the goal for employment. This year 1/7 of the funds and employment slots are available. "Relief" for this summer is not likely.

Meeting adjourned.