Coalition to Implement Olmstead in New York (CTIONY)
Policy Paper - Full Report | CTIONY
The Coalition to Implement Olmstead
in New York (CTIONY) is a statewide organization that was formed
by consumers, advocates, and service providers in October of 1999
to advocate for implementation of this historic Supreme Court decision
in New York State. On September 17, 2002, Governor George E. Pataki
signed the Most Integrated Setting bill into law. This law calls
for the creation of a Most Integrated Setting Coordinating Council
that is to develop a plan to ensure that individuals with disabilities
of all ages are able to live and receive services in the Most Integrated
Setting. CTIONY has developed this policy paper to provide input
to New York’s Olmstead Planning Process to ensure that the
plan that is developed is both comprehensive and effective. Because
this Executive Summary cannot possibly cover all of the issues that
the policy paper addresses in such a substantive manner, we urge
you to read the policy paper to better understand the issues outlined
in this Executive Summary.
Our recommendations for New York
State’s comprehensive, effectively working Olmstead Plan can
be divided into three major areas: (1) process for creating the
plan, (2) components of the plan, and (3) issues that the plan must
PROCESS FOR CREATING THE
Primary stakeholders such as advocates, seniors, and individuals
who have disabilities must be included in all facets of plan development.
The MIS Coordinating Council should work with Independent Living
Centers and Area Agencies on Aging and their multiple contractors
to coordinate true statewide consumer participation. The entire
process must be a public process open to public review and monitoring.
The Olmstead Plan must be based on quantitative data regarding the
utilization of current community based services and institutional
settings. Data on consumer satisfaction with existing services and
supports must be collected in order to obtain qualitative data about
consumer satisfaction and quality assurance.
COMPONENTS OF A COMPREHENSIVE,
EFFECTIVELY WORKING OLMSTEAD PLAN
CTIONY has identified several components as critical to a comprehensive,
effectively working Olmstead Plan. The state’s Olmstead plan
must be comprehensive, include measurable goals with target dates,
and include recommendations for funding. Furthermore, in order to
combat the institutional bias that permeates state agencies that
currently oversee institutional settings and community-based alternatives,
the state should create a new Office of Integrated Community Services
to consolidate services and supports. This newly created office
should be headed by a cabinet level position that is responsible
for coordinating the State’s efforts to comply with the Olmstead
decision. In order to identify and assess individuals who want to
live in the Most Integrated Setting, the state should work with
consumers and advocates to create a standardized assessment tool.
The plan should also include mechanisms for tracking and data collection,
as well as quality assurance activities. Finally, the plan must
create services and supports, such as a Medicaid Waiver and a “money
follows the individual policy” so that placement in the Most
Integrated Setting becomes the norm.
THE PLAN MUST ADDRESS
The summary of issues identified in this policy paper are meant
only to serve as a starting point, and CTIONY recognizes that many
other issues will be identified through the planning process.
York State has not taken advantage of the flexibility which has
been created at the federal level. (1) the TBI and OMRDD
Waivers could take advantage of the change in federal policy that
allows individuals to receive case management services for up to
180 consecutive days prior to discharge, (2) transition costs could
be a reimbursable Medicaid Waiver service, (3) ask CMS if it will
allow CDPAP providers to receive a “personal assistance retainer”
payment like ones available to waiver providers, and (4) state regulations
are much more restrictive than federal regulations in terms of who
can be paid as a personal attendant.
Funding in New York State is securely tied to institutional
settings. New York State should do the following: (1) develop
a “money follows the individual” policy. (2) allow individuals
in adult homes to use the enhanced state-share SSI funds that they
receive while in adult homes towards a housing subsidy in the most
integrated setting, and (3) put a moratorium on creating additional
nursing home beds and stop the issuance of future bonds to nursing
Services are fragmented by county. There is significant
variation between counties in the amount of home care services which
The county share of Medicaid has created a disincentive
to authorizing long term care services. Counties both authorize
home care services and are fiscally responsible for a percentage
of Medicaid payments. To address this inherent conflict of interest,
the state could impose a tax on sales or advertising by pharmaceutical
companies and use this additional revenue to eliminate the county
share on community-based services.
New York State has focused virtually all of its Medicaid
waiver resources on people with developmental disabilities.
The state should develop a waiver which is limited to transitioning
people to the community who have been in nursing homes for at least
60 days. Such a waiver would result in a reduction in Medicaid expenditures.
The lack of affordable, accessible, and integrated housing
forces people into less integrated settings. The state
should do the following: (1) Create a housing trust fund, (2) Develop
a Medicaid Waiver with a home modification component, (3) Encourage
local housing authorities to create a local preference for individuals
in nursing homes, (4) Require third-party notification from housing
authorities for individuals on Waiver Programs, (5) Enforce HUD’s
504 regulations, (6) Create a mandated accessible housing registry,
and (7) Enact statewide visitability legislation.
The current home care system has not changed to meet needs
of people in Post Olmstead era. Some Local Social Service
Districts do not follow regulations. Some home care agencies deny
individuals who do not have “back-up”.
The NYSOFA administered senior services network lacks adequate
community supports. New York State’s current network
of Area Agencies on Aging and their multiple subcontractors lacks
sufficient community supports to maintain older New Yorkers in their
The Mental Health System lacks adequate community supports. The
existing mental health system focuses on “treatment of the
illness” and tends to overlook basic assistance with Activities
of Daily Living (ADLs).
The Developmental Disability system is biased toward congregate
living. The current funding systems does not easily allow
individuals to move from congregate living to the most integrated
VESID has largely ignored individuals in nursing homes.
VESID should give priority for vocational rehabilitation and independent
living services to those individuals currently in nursing homes
or at risk of being placed in a nursing home.
Workforce issues are critical to addressing the Olmstead
decision. Many community-based attendants were not included
in HCRA 2000. New York needs to develop a comprehensive strategy
to hire and retain workers in both the medical and non-medical systems.
New York State Medicaid regulations reinforce the institutional
bias. Existing Medicaid regulations force individuals into
nursing homes by terminating their Medicaid coverage in the hospital
if they are evaluated to be eligible for nursing home services and
do not accept the first available nursing home bed within a 50 mile
comprehensive and effectively working Olmstead Plan must be inclusive
of consumers and advocates. It must contain real numbers, real goals,
real timelines, and real fiscal allocations. The most important
measure of the state’s Olmstead Plan will be the real people
who return to or remain in the Most Integrated Setting.