Center for Disability Rights’ Community Living Budget Priorities

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Each year in preparation for the coming year’s New York State Budget, the Center for Disability Rights produces a document detailing our budget priorities for the year. The following are the priorities we have shared with the State in hopes of influencing the 2019-20 budget. It is not intended as an exhaustive list and the Disability Community has many other very important needs, but these are the issues we felt most needed to be addressed as part of the budget.

The Disability Community desperately needs Governor Cuomo to take action our behalf in his next budget. Without this many of New York’s nearly 5 million disabled people will be at much greater risk of unnecessary institutionalization. With a federal government that has spent much of the last two years attacking our community, we need the governor’s support more than ever. He can do this by including the following priorities in his budget.

Increase Attendant Wages

Without an adequate attendant workforce, disabled people do not have the support we need to live in the community. Currently, many attendants are making minimum wage for work that is much more intensive than the minimum wage service industry work. Attendants hired through the Consumer Directed Personal Attendant (CDPA) program make significantly less than their direct care counterparts employed by OPWDD to provide services to people with developmental disabilities. Fiscal intermediaries are struggling to offer competitive wages to attendants without adequate Medicaid reimbursement. People with physical disabilities, including older New Yorkers, are simply unable to reliably find and competitively pay quality attendants to support them to live in the community. The State must act to fulfill its obligation under the Olmstead plan to ensure access to supports and services in the most integrated setting possible. The State must increase the Medicaid reimbursement rate for home health care and consumer directed personal attendants to ensure a living wage and increase the workforce pool. In taking on the Community First Choice option and the funding that comes with it, the State committed to not discriminating on the basis of disability in its service provision. By paying attendants for people with physical disabilities less than attendants for people with intellectual and developmental disabilities, the State is violating this nondiscrimination requirement. New York can comply with CFC and stop discrimination on the basis of disability by setting the rate for consumer directed personal attendants and other home care workers at the same rate as providers under OPWDD.

Assuring Access to Home and Community Based Services

Last year’s budget incentivized institutional placements by removing disabled people who are deemed permanently placed from managed long-term care (MLTC) into fee for service. This will mean that anyone the managed care organizations deem too expensive to serve in the community will be at risk of institutional placement. For several years we have advocated for a high needs community-based rate cell. This past year the Department of Health went to CMS for approval of a version of that rate cell based on cost of the services an individual requires. Predictably CMS refused the request and made it clear that no rate cell could be created on the basis of cost.  To solve this, the State must go back to CMS with a rate built around individual acuity. This rate cell could be based on an average of the Universal Assessment Scores for the minority of disabled people whose services are more expensive in the community than in an institution. 

In addition, New York Currently exiles nearly 600 Medicaid enrollees to institutions in other states. These New Yorkers are forced to live sometimes hundreds of miles away from their families. In adopting the Community First Choice Option, New York has positioned itself to be a national leader in providing home and community-based services, but this position is undermined by the State’s continued decision to warehouse its residents in out of state institutions. Not only is repatriation the right thing to do, it will save the state money over the extremely high rates we are paying to out of state institutions. The State must repatriate all of its residents institutionalized out of state and provide them community-based services.

Increasing Accessible Housing Options

The lack of visitable housing throughout the state keeps disabled New Yorkers from fully participating in our communities and prevents many older new Yorkers from aging place. The Governor, in the past, has expressed his support for the concept of a visitability tax credit to help New Yorkers retrofit their homes to include features such as a no step entrance and an accessible first floor bathroom. To date, he has not included such a tax credit in his budgets. The Governor must include a Visitability Tax Credit capped at no less than $2,000,000 with an individual limit of $7500.

Recently, the Governor announced renewed efforts to incentivize the deinstitutionalization of New Yorkers with disabilities as part of the “Able New York” plan. Having the option to choose community integration over segregation in an institution is paramount. However, a lack of affordable, accessible, integrated housing is preventing people from actually leaving institutions, and in some cases has led to the discharge of people from nursing facilities into homeless shelters. It is therefore even more urgent that we have a plan for affordable, accessible, integrated housing. This plan must include increased funding for Access to Home for all people with disabilities set at $10,000,000.

Lastly, disabled people placed in nursing facilities for longer than 90 days are homeless! New York has hid for too long behind federal regulations that work to exclude people in institutions from priority housing. If New York is to be the national leader that the Governor is always proclaiming it to be, the State must go further than the federal government and recognize that disabled people who are in institutions for more than 90 days are homeless and should be afforded the same services and priorities that the state provides for other homeless populations.

Assuring Disability Representation and Rights Protection

The Disability Community needs a dedicated body within state government to address the needs of people with disabilities and assist in realizing the goals of community integration and independence. Filling the Office of the Advocate will embed disability issues within the Governor’s chamber. The Office for the Advocate for People with Disabilities is already on the books in New York, created by Governor Mario Cuomo, and it has been unfilled and unfunded for many years. The Office of the Advocate must be filled. The Office will advise and assist the Governor in developing policies that are inclusive of the perspectives and needs of disabled New Yorkers, and assist in implementing civil rights law and the State’s Olmstead Plan, a perspective that has been sorely missing for too long. 

Funding Independent Living

Independent Living Centers (ILCs)continue to provide critical services to an ever-increasing number of people. ILCs have and continue to be the driving force in community integration across the state, and are struggling to provide adequate services with a budget that has been level-funded for years. ILCs need more funding to continue providing services to respond to local needs and increase access to education, employment, housing, transportation, independent living skills, and transition services. In addition to providing numerous benefits to disabled New Yorkers, ILCs save the State by diverting and transitioning individuals from costly institutional placements. The State must increase funding for ILCs to $18,000,00 with incremental increases to the budget to arrive at a base level of $25,000,000.

Support and Fund LEAD K

Nationwide and in New York, Deaf children are entering the education system well behind their non-Deaf peers. We are aware that much of this is tied to language acquisition but, unfortunately, that is where our knowledge ends. As Deaf children enter the education system this gap only grows, meaning that Deaf students are leaving the school system with a third or fourth grade reading level on average, with very few passing the State’s Regents Exam.  For this reason, the Deaf Community across the country has mobilized around a bill called Language Equality and Acquisition for Deaf Kids – LEAD K. LEAD K would require the State Education Department (SED) to assess the language acquisition of all Deaf children ages 0-5. The data from this assessment would feed into a committee that would use it to advise SED on the implementation of early intervention strategies and kindergarten readiness programs. The State must pass LEAD K so we begin to make all educational opportunities such as the Excelsior scholarship available to Deaf Kids.

End Subminimum Wages and Promote Disability Employment

Governor Cuomo has devoted considerable effort to ensuring that New York provides a living wage for minimum wage workers. However, legal barriers exist to ensuring all New Yorkers benefit from the protection of the living wage. Organizations in New York continue to use subminimum wage certificates to legally pay disabled people a subminimum wage, in some cases pennies an hour. This is an outdated and reprehensible practice; all New Yorkers have the right to the State-set minimum wage for their work, no matter what kind of work they perform. New York must be a leader for the country in doing away with subminimum wage. While taking steps to apply the minimum wage to all under the law, the State should refuse to do business with organizations that continue to pay people a subminimum wage.

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.