Throughout 2017 Governor Cuomo has reassured New Yorkers that all are welcome and safe in our State. At the same time that the Governor has told us that “New York remains a beacon of hope and opportunity for all” he has disregarded the needs of disabled New Yorkers. As a result, many issues faced by the Disability Community are now far worse than they ever needed to be. Disabled New Yorkers find ourselves in a position where our right to live in the community – a right which the Governor’s own Olmstead plan claims he is committed to protecting – is increasingly at risk, or in the case of those currently in institutions, denied. No one should be forced live or die in an institution. This past summer, both Governor Cuomo and the State Medicaid Director estimated that federal efforts to repeal the Affordable Care Act would cost the state billions. The Disability Community, including many from New York, put our bodies on the line over and over again to ensure that did not happen; the Governor and the State must start repaying that effort by actively working with our community. Governor Cuomo needs to lead instead of abandoning the Disability Community. His budget must include the priorities listed below.
Governor Cuomo Must Raise Attendant Wages
Last February the Assembly held two days of hearings examining low attendant wages. The hearings began with the State Medicaid Director declaring that attendant wages were “robust.” This statement was followed by hours of testimony and evidence from disabled people, fiscal intermediaries, independent living centers, and other agencies demonstrating that low attendant wages were limiting disabled and elderly New Yorker’s ability to find adequate attendant services. It became clear that not only are low wages impairing the ability to recruit enough attendants, low wages are also lowering the quality of attendant care people are receiving.
Governor Cuomo traveled the state fighting for companies such as McDonalds to pay its workers a fair wage, but he has yet to ensure that his administration does the same. He has done nothing to address the travesty of personal attendant (PA) wages. Our PAs – the people who help us live our lives and care for our bodies – are grossly underpaid, making less than fast food and retail workers.
It is also worth noting that our PAs are paid significantly less than their direct care peers working with people with developmental disabilities. This puts the State into violation of federal law. New York accepts money under the Community First Choice Option which mandates that the State cannot discriminate in the services it provides on the basis of type of disability. In offering consumer directed PA users a lower reimbursement than people with developmental disabilities, the Governor is ensuring that we cannot hire the same quality of attendant and that it is more difficult for us to even find attendants to work for such low wages. Our needs are no less than anyone else, and yet the Cuomo administration is paying less solely on the basis of the types of disabilities we have. This is a violation of the States agreement under CFCO. The Governor must create adequate payment structures that will maintain a sufficient workforce to provide services in home and community based settings for all individuals that require such services. It is also important that whatever measures the State takes, it must ensure any funds it provides makes it through the plans to the workers. State funds do us no good in the pockets of managed care organizations.
High Needs Community Based Rate Cell
Since Governor Cuomo began his care management for all initiative, the Disability Community has been concerned that managed care promotes unwanted institutionalization. This has led us to the conclusion that we need a high needs community rate cell to promote community integration of people with significant disabilities – and to counter the disincentives to community integration that exist in the current capitation model. Right now, the incentives created by the capitation do not support managed care organizations (MCOs) providing services to people with disabilities who have significant service needs.
A high needs community rate cell is a key component that could allow us to start to see progress on the State’s Olmstead plan. It would allocate funding to specifically support high cost high needs individuals to live in the community. Without this high needs community rate cell MCOs will continue shy away from taking on anyone they deem ‘high cost’ or otherwise push people they identify this way into institutions.
Increase Base Funding for Independent Living Centers
Funding levels for Independent Living Centers (ILCs) have barely kept up with inflation. Despite this, ILCs have been the single most effective force in helping disabled and aging New Yorkers transition out of institutions and into the community. ILCs have consistently done more and more with less and less. The Governor must increase base funding for ILCs in SFY 2018-19 to $18 million with the long term goal of increasing the State appropriation to $25 million. ILCs have been carrying the Governor’s water for too long. Increasing ILC funding would save the State billions over the long term by transitioning people from institutional settings to cheaper, more desirable community based settings. A 2012 National Council on Disability report showed that the yearly average cost to New York State for serving a person in the community was $69,752, while the cost for the State to serve the same person in an institution was $337,625. Not only could the State save money through this deinstitutionalization, but the State could also leverage more federal dollars through the Community First Choice Option. At present, there are enormous disparities in State funding for its ILCs hampering the efforts of many to expand their work. CDR recommends that all funding increases be used to increase the base funding evenly across ILCs.
Increase the Amount Accessible Units in Publicly Funded Housing Projects
Every year the State funds numerous housing projects. Depending on the program the project is funded under, many of these projects have vastly different requirements to provide accessible units. Lack of accessible housing is a primary reason that disabled and elderly people are unable to transition from institutional settings into the community. None of the State’s current requirements are sufficient in addressing the shortage and, therefore, must be modified to increase the amount of accessible units to be created and maintained. The Governor must ensure that all new publicly funded housing stock includes adequate levels of accessible units to ensure that no disabled person is unable to transition back into the community due to a lack of housing. It is time for the Governor to take his Olmstead plan off the shelf and put into practice.
Restore Access to Home Funding
In his most recent veto of the Visitability Tax Credit (AB 5950-A) the Governor cited the Access to Home program as evidence of his support for increasing the accessible housing stock. Access to Home is a wonderful program that would truly demonstrate Governor Cuomo’s commitment to accessible housing, if he had done something about its funding getting slashed by 75% during his time in office, cutting it from four million to one million.
There is a crisis level shortage of affordable, accessible, integrated housing in New York and the Governor can no longer get by on empty words of support. People are dying in nursing homes as they wait for accessible homes. Access to Home was designed to provide financial assistance to property owners to make dwelling units accessible for disabled people with low and moderate incomes. This program can fund modifications as simple as a ramp to get in the front door. The installation of a ramp can be the difference between disabled or elderly New Yorkers being able to go back to their own homes or being forced to go to a nursing facility. At its current funding levels Access to Home has minimal impact. The Governor must fund Access to Home Funding at $10 million to meet the needs of disabled and elderly New Yorkers.
Include the Visitability Tax Credit in the Budget
In addition to Access to Home funding, the Governor must bring the Visitability Tax Credit into his budget. Governor Cuomo has vetoed the legislation for the past three years, singing its praises but saying it needed to be in the budget. Despite his professed support for the legislation, the Governor has yet to make it part of his budget. Furthermore, it appears that Governor Cuomo has removed Visitability from the final budget after the Senate and Assembly expressly included it in their budgets. Even capped at one million dollars, the Visitability Tax Credit will ensure that disabled people have greater participation in our communities and allow older New Yorkers the ability to age in place. It will also save the State money over costly institutionalization for someone that can no longer get into their home.
Reestablish and Fund the Office of the Advocate for People with Disabilities
Mario Cuomo demonstrated his commitment to disabled New Yorkers by establishing the Office of the Advocate for People with Disabilities in 1983. This office was intended to represent the interests of the Disability Community within state government. In the fifth year of Andrew Cuomo’s administration, however, this office sits empty and no one is representing our community. This absence goes a long way in explaining the Governor’s abandonment of disabled New Yorkers. Governor Cuomo must remedy this immediately by reestablishing the Office of the Advocate for People with Disabilities as an independent agency. This office has the potential to offer the State vital guidance as it navigates the difficult implementation of CFC.
If Governor Cuomo truly envisions New York as a safe haven for all, he has a lot of work to do. It is difficult for those of us in the Disability Community to feel safe in a state that will not do what is necessary to ensure equality & fairness for disabled New Yorkers. Governor Cuomo has abandoned our community for too long and now we are dealing with multiple crises. Continued inaction on housing, attendant wages, and community integration will not only hurt our community but it will hurt New York.
About the Center for Disability Rights
The Center for Disability Rights (CDR) is a disability led, not-for-profit organization headquartered in Rochester, New York, with satellite offices in Geneva, Corning, and Albany. CDR advocates for the full integration, independence, and civil rights of people with disabilities. CDR provides services to people with disabilities and seniors within the framework of an Independent Living Model, which promotes independence of people with all types of disabilities, enabling choice in living setting, full access to the community, and control of their life. CDR works for national, state, and local systemic change to advance the rights of people with disabilities by supporting direct action, coalition building, community organizing, policy analysis, litigation, training for advocates, and community education.