2007 STATEWIDE DISABILITY ACTION AGENDA
The New York State Independent Living Council (NYSILC)
contracts with the New York Association on Independent Living (NYAIL) to
coordinate the Statewide Systems Advocacy Network (SSAN). NYAIL’s 2007
Disability Priority Agenda will serve as the Statewide Disability Action Agenda
for the SSAN. The agenda is provided below.
Budget Priorities
1. Independent Living Center (ILC) Funding
Background:
NYAIL is pleased that ILCs
received a minimal increase of $1 million in state funding last year, after a
four-year period of level or decreased funding. This increase provided some
additional ability for centers to address existing shortfalls, but funding has
not kept pace with the dramatic increase in demand for services over the same
period. This year, ILCs need a $5 million increase to continue and expand their
work providing people of all ages and disabilities with services that allow
them to:
• Develop skills to live independently
• Earn degrees, find jobs, and become self-sufficient
• Reduce their reliance on state and federal benefit
programs
• Stay out of institutions and participate in
community life.
A critical part of the work of
ILCs is assisting individuals of all ages with disabilities in transitioning
from or avoiding unwanted placement in nursing homes or other institutions. A
recently released study of transition and diversion projects at six ILCs by the
New York State Developmental Disabilities Planning Council demonstrated an
average savings of $63,800 per person per year in Medicaid costs for each
person transitioned into the community and $83,000 in projected savings per
person per year in Medicaid costs for each person diverted from nursing
facility admission. The total savings to the state for the 499 people
transitioned or diverted during the period 2003-2006 was nearly $34 million.
ILCs are an essential part of
the solution to successful restructuring of the long term care system, away
from costly institutions to a community-based system of services and supports
for people with disabilities of all ages.
Top Priority:
¾ Increase funding for ILCs by an additional $5
million this year.
2. Health Care
Background:
Under the 1999 U.S. Supreme
Court Olmstead decision, people with disabilities are entitled to
receive the services and supports they need to live freely in the community and
avoid unwanted placement in nursing homes and other institutions. However, the
impact of the Olmstead decision has not been fully realized in New York
in terms of facilitating the transition to community-based health care
alternatives. Problems with obtaining necessary health care services and
supports remain a major barrier to full independence and integration for people
with disabilities in New York. While the State is focused on reducing the costs
of Medicaid and other programs, it is crucial that people with disabilities
have access to the health care services and supports they need and choose.
Top Priorities:
¾ Oppose proposals negatively affecting eligibility,
benefits, coverage, and/or access to services for Medicaid beneficiaries.
Eliminate the systemic bias that leads to unwanted placement in nursing homes
and other institutions.
Additional cuts or reductions
in eligibility for Medicaid beneficiaries put people with disabilities at
increased risk of unwanted placement in a nursing home and/or poor medical
outcomes. As the Legislature considers Medicaid and long term care reforms, it
must make community integration through the provision of vital and accessible
services to people with disabilities of all ages its top priority.
¾ Promote comprehensive long term care reform that
will not reduce coverage or access to services.
New York State’s long term care
“system” is broken. A restructured long term care system must allow people with
disabilities of all ages to choose to live and receive services in the
community. It must be person-centered and consumer controlled. New York must
offer a spectrum of services and supports to meet the needs and desires of
individuals in all areas of the state. Understandable, complete and unbiased
information must be available to individuals considering or in need of long
term care services.
¾ Provide rental/housing subsidies to participants in
the new Nursing Facility Transition and Diversion (NFTD) Medicaid waiver
program.
New York will implement a new
Nursing Facility Transition and Diversion Medicaid waiver this year, which will
help 5000 seniors and people with disabilities live in their communities and
avoid or end unwanted nursing home placement. In order to make this a reality,
finding affordable, accessible, and integrated housing is critical. Part of the
savings to the State from avoiding high-cost nursing home placements should be
used to offset the cost of making housing subsidies available to individuals
transitioned and diverted through the NFTD waiver program.
¾ Expand coverage under New York’s Elderly
Pharmaceutical Insurance Coverage (EPIC) program to people with disabilities
under age 65.
o A.3074-A/S.1357 of
2006
Many people with disabilities
live on marginal incomes which do not qualify them for Medicaid. Some are faced
with the choice of either buying medication, or paying the rent or buying food.
Those who worked long enough to qualify for Social Security Disability
Insurance (SSDI) are eligible for the Medicare Part D prescription drug
program, but the significant cost sharing associated with this program will
still make it unaffordable for many. EPIC expansion will help people with
disabilities stay healthy and avoid costly and unwanted institutionalization.
¾ Extend Medicaid wrap-around coverage for people
dually eligible for Medicaid and Medicare who are unable to obtain prescription
drugs due to Medicare Part D regulations.
o A.12117 of 2006
A safety net is necessary to
fill in the gaps left by the creation of Medicare Part D for prescription drug
coverage. The many problems with Medicare Part D should not fall on the backs
of New York’s most vulnerable citizens – the elderly and people with disabilities
– who need prescription drugs to survive.
¾ Increase access to comprehensive health care
coverage for all New Yorkers with disabilities.
As a result of federal Medicaid
cuts under the Deficit Reduction Act of 2006, the Medicare Part D rollout, provider
“right sizing efforts” and more, people with severe disabilities will face a
sudden and unprecedented level of erosion in their health services. Many may be
forced to pay more for their care, have greater difficulty accessing their
care, and forego care altogether. State lawmakers must oppose budget proposals
that would cut off or restrict access to health care. In addition, publicly
funded programs should further the community integration of people with
disabilities. People with disabilities cannot remain stable and participate in
community life if they are unable to access appropriate publicly funded health
services.
3. Housing
Background:
The
availability of accessible, affordable and integrated housing opportunities for
people with disabilities is critical to sustaining fully independent lives in
their communities. The Access to Home program has provided some assistance for
home modifications, but more is needed now for New York to fully address the
housing crisis facing people with disabilities.
Top Priority:
¾ Create a housing trust fund for people with
disabilities.
A housing trust fund would
provide people with disabilities with very low to moderate incomes with grants,
loans and other housing supports and services, including home modifications.
Public Policy Priorities
1. Civil Rights
Background:
The Americans with Disabilities
Act (ADA) of 1990 and Section 504 of the Rehabilitation Act of 1973 each
provide comprehensive protection for the civil rights of people with
disabilities under federal law. Efforts to weaken the scope of the ADA in
particular, and inconsistencies with the provisions of NYS Human Rights Law,
leave people with disabilities facing confusion and uncertainty about the scope
of their civil rights protections in New York. New York State must do its part
to ensure these critical protections are incorporated into state law and that
the State’s immunity to suit under the ADA and Section 504 is waived.
Top Priorities:
¾ Incorporate Titles II and III of ADA into NYS Human
Rights Law.
o A.7294/S.5074 of 2006
o A.6328/S.3921 of 2006
¾ Waive the State’s sovereign immunity to claims under
the ADA and Section 504.
o A.2159 of 2006
2. Housing
Background:
According to a recent study,
“Priced Out in 2004,” by the Technical Assistance Collaborative and the
Consortium for Citizens with Disabilities, no person receiving Supplemental
Security Income (SSI) in New York State can afford an efficiency or one bedroom
apartment. Recipients would have to pay over 118% of their SSI benefits for an
efficiency apartment and 137% of their SSI benefits for a one bedroom
apartment. The monthly SSI payment to a person living alone with a disability
in New York State is currently $710. Because of the cyclical nature of public
and private funding, communities are falling farther and farther behind in
addressing the growing need for affordable, accessible, and integrated housing.
Yet, decent affordable housing for people with disabilities should not be
dependent upon yearly state budget decisions. Instead, the State should ensure
that people with disabilities have more opportunities to obtain affordable,
accessible, and integrated housing.
Top Priorities:
¾ Incorporate the housing provisions of Section 504 of
the Rehabilitation Act into state law.
o A.7867/S.4933-A of
2006
Housing developers often fail
to comply with Section 504’s requirement to set aside a certain percentage of
accessible units for people with disabilities when federal dollars are used for
construction. By including these requirements in state law, the Department of
Housing and Community Renewal (DHCR) will be fully empowered to enforce these
requirements and ensure that the State is in compliance with federal standards.
¾ Establish standards for “Visitability” in state law
to require all newly constructed single-family houses, townhouses and
ground-floor units of duplexes and triplexes built with public funds to be made
accessible.
“Visitability” is a movement to
change home construction practices so that new homes offer a few specific
features that make the home easier for people with a mobility impairment to
live in and visit. The spirit of “Visitability” is the belief that it is
unacceptable that new homes continue to be built with gross barriers, given the
ease of building basic access into the majority of new homes and the harsh
effects major barriers have on people’s lives, including physically unsafe
conditions, social isolation, and unwanted institutionalization.
3. Education
Top Priority:
¾ Place the burden of proof on school districts in due
process hearings challenging the IEP or other aspect of a student’s special
education program.
o A.11965/S.8354 of 2006
The U.S. Supreme Court in 2005
decided in Schaffer v. Weast that, in the absence of state law to the
contrary, the burden of proof in appeals challenging a special education
student’s Individualized Education Plan (IEP) is with the party seeking relief.
In most cases, the party seeking relief is the child’s parents, not the school
district. Parents typically have fewer legal resources available to them and
less access to information about their child’s education program than the
school district officials. It had been New York’s long-standing policy, prior
to the Schaffer decision, that school districts bear the burden of proof
in such cases.
4. Election Reform
Background:
With the passage of the federal
Help America Vote Act (HAVA) in 2002, voters with disabilities in New York
State believed that they would finally be afforded full and equal access to the
electoral process. Unfortunately, despite concerted efforts by disability
rights advocates, New York has been the last state to implement HAVA’s requirements
and ensure that persons with disabilities can vote independently, privately and
securely and the State is currently being sued by the federal government as a
result. People with disabilities must be afforded this basic right as citizens
to vote along with their families, friends, and neighbors and barriers to this
right that remain in New York State Election Law must be removed.
Top Priority:
¾ Eliminate provisions in Section 4-104 (1-a) of the
NYS Election Law allowing waiver of polling place accessibility requirements.
5. Transportation
Background:
The limited availability of
accessible transportation services is a major barrier faced by individuals with
disabilities throughout the state, often leading to unemployment, the inability
to access medical care, and isolation from friends, family, and full community
participation.
Top Priority:
¾ Require transportation service providers, such as
taxis, limousines and hotel shuttles to purchase accessible vehicles or
otherwise ensure that they have the capacity to serve people with disabilities.
6. Mental Health
Background:
We
applaud the passage last year in both houses of a bill to ban the use of
solitary confinement in special housing units of people with psychiatric
disabilities. Unfortunately, the bill was vetoed by Governor Pataki.
Top Priority:
¾ Ban the use of solitary confinement in special
housing units (SHUs) of people with psychiatric disabilities in state correctional
facilities.
o A.3926/S.2207 of 2006
Psychiatric
disabilities may interfere with an inmate’s ability to conform to prison rules.
Inmates who violate prison rules are frequently segregated for months or even
years in disciplinary lockdown, sometimes known as special housing units
(SHUs). Confined for 23 hours a day, these prisoners face severe social
isolation, extreme boredom and idleness and increased risk of suicide. Placing
people with significant psychiatric disabilities in solitary confinement is
inhumane and wrong and should be banned.