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 -
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.
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.
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.
The Chair acknowledged that he talked directly to Michael
and encouraged him to consider continuing to serve in the capacity of a
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 Directors Report: Brad Williams
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.
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.
- 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
- Public Policy Committee Report:
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.
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
- ADA Committee
The ADA Committee did not submit
a report for inclusion into the packet..
- Election Reform Committee:
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.
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
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
- Most Integrated Setting(CTIONY Steering
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
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
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:
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.
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
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.