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 address.
PROCESS FOR CREATING THE PLAN
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.
ISSUES 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.
New 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 homes.
Services are fragmented by county. There is significant variation between counties in the amount of home care services which are authorized.
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 homes.
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 setting.
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 radius.
A 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.