Dear Governor Cuomo,

Since you took office in 2011, we have worked diligently to recommend policy and funding changes that would assure people with disabilities have the option to live in the community, rather than be forced into institutional settings.  While our proposals have generally languished, other initiatives – including those that reinforce the institutional bias in New York – have moved forward.  Last year, it seemed that New York was on the verge of making substantive changes to assure the community integration of people with disabilities, but during the year we have struggled to move our issues forward.  Instead, we find that people with disabilities are losing access to vital home and community based services under managed care, moving state policy backward in this arena.

Recognizing that we have been unsuccessful in our advocacy using policy papers and budget recommendations, this year we are providing you with a handy list of action items we have previously (and repeatedly) urged your administration to implement.  We remain hopeful that you and your team will embrace these proposals and address the community integration needs of New Yorkers with disabilities.

The majority of our proposals are cost neutral.  In the recommendations below, for such proposals there is no notation about cost or savings.  Other proposals actually reduce state spending and are noted as generating savings.  Those that require funding include a notation to that effect and can be funded using the Community First Choice enhanced FMAP that was designated for Olmstead-related purposes.

As you consider our priorities, it should be noted that Olmstead-related activities to address the needs of the physical disability/aging community have lagged behind the efforts to address the needs of others.  Additionally, the bulk of the enhanced CFC FMAP being brought into the state has been generated from this same community.  Consequently, we believe that this justifies targeting the resources as described in our recommendations.

Creation of an Office on Community Living

• Create and fund the Office on Community Living to promote community integration of people with disabilities, starting with the transition of the Independent Living Center (ILC) network from NYSED into this new state office ($1.5 M);

• Fund the necessary infrastructure so the ILCs – as part of the Office on Community Living – can effectively participate in a “no wrong door” system for accessing long term services and supports that is truly cross-disability and cross-generational ($1.5 M);

• Increase base State funding to $540,000 per ILC to provide additional services and meet increased demand for support with community living ($10 M);

• Individuals in nursing facilities and institutions who want to transition into the community may not have access to the information and advocacy they need.  Fund ILCs to conduct outreach and transition services in order to identify individuals who want to transition into the community and connect them to the resources they need to make the transition, in order to establish model for funding transition services  as a service in managed care ($5 M); and

• Consistent with efforts to support diversity in the state, acknowledge the unique role of ILCs and other disability-led organizations as “disability competent” organizations which meet the needs of the Disability Community using the unique cultural perspective of that community.

Addressing the Attendant Workforce Shortage in Consumer Directed Services

• Assure continuity of consumer directed services and the body-integrity of people with disabilities by fully funding the actual costs associated with the FLSA travel and overtime requirements (estimated $30 M); and

• Consistent with the administration’s efforts to increase wages, establish state policy and provide funding as necessary to assure that Consumer Directed attendants receive adequate wages under managed care and through Medicaid FFS (An estimate is being prepared).

Fair Wages for ALL New Yorkers, including New Yorkers with Disabilities

• Consistent with the administration’s efforts to increase wages, eliminate the ability of organizations in New York to continue using an ableist policy that permits New Yorkers with disabilities to be paid less than minimum wage.

Maximize the Impact of the Community First Choice Option

• Many people with disabilities who require assistance with health related tasks do not receive the services and supports they need because they do not qualify for, or do not want to use, Consumer Directed Personal Assistance Services. The State should implement the Advanced Home Health Aide proposal, which will enable these individuals to receive assistance with health related tasks in the community, generate savings through reduction in nursing costs, and increase New York’s draw-down of CFCO funding; and

• To maximize the CFC enhanced match NYS can draw down from the federal government, accelerate the transition of OPWDD settings in complying with the federal setting rules to maximize (Generates additional revenue associated with increased federal funds).

Utilize Managed Care to Promote Community Integration

• Require that contracts in managed care, through changes in the capitation model, promote the community integration of people with disabilities – including those with the most significant disabilities, through the creation of a high needs community rate cell;

• There is an inherent conflict of interest when Managed Care Organizations (MCOs) fail to provide the independent person centered planning that is required by Federal rules. Protect the rights of New Yorkers in Managed Care by requiring MCOs to contract for this service;

• Require that MCOs pay for home and vehicle modifications, assistive technology and durable medical equipment identified in the individual’s person centered plan to support them living independently and fully participating in community life, as is required by the approved CFCO State Plan Amendment;

• Issue specific guidance to managed care plans about their obligations to comply with the Olmstead decision in their policies, procedures and practices, including specific case examples and model policies;

• Due process issues exist in Managed Care which have undercut the ability of people with disabilities to receive necessary services and remain in the community. In order to assure that individuals with disabilities have, at minimum, the opportunity to appeal decisions which undercut their ability to remain in the community, these issues must be addressed;

• Publicly support efforts to maintain critical 1915(c) waiver services which support community integration in the context of managed care, including the provision of independent service coordination;

• Establish a “Community First” policy so that every person with a disability is provided services in the MOST integrated setting first and, only when necessary, moved into institutional placement;

• Loopholes exist in the authorization of state plan home and community-based services, which can prevent cause people with disabilities who seek personal care or certified home health care services, from being offered the opportunity to go on a waiting list for such services when they are denied home and community based services, resulting in their institutionalization. These loopholes must be closed, and people with disabilities in institutions must be given the opportunity, on a regular basis, to choose home and community based services;

• Establish a requirement that managed care implement an expedited community-based enrollment process so individuals with disabilities in hospitals and nursing facilities can quickly be approved for community-based services;

• Require managed care organizations to track and report measures that assess the level of community integration and consumer control in their service authorizations;

• Establish an expectation that wherever possible, managed care organizations will contract with ILCs and other disability-led organizations to provide culturally-competent services relevant to the Disability Community; and

• Work with the Consumer Directed Personal Assistance Association of NYS to identify a systematic solution to address the danger presented by scofflaw home care provided by organizations (some of which have no relevant experience) under the auspices of consumer directed personal assistance services.

Housing

• Establish a preference for and set-asides of federal housing vouchers (e.g. Section 8) for people in institutions, at risk of entering an institution, or in state-run housing programs;

• Increase funding for housing subsidies for people with disabilities who are institutionalized or at risk of institutionalization due to the lack of affordable, accessible, integrated housing ($10 M);

• Prioritize the use of existing funds to support the development of integrated and accessible housing units that are affordable to people with disabilities living at extremely low incomes, well below 30% of area median income – determining appropriate target with the disability rights community; and

• Expand the availability of accessibility modifications by adequately funding Access to Home for those individuals who are not currently receiving Medicaid LTSS and are at risk of institutionalization.

Improve Olmstead Reporting

• As described in the Governor’s Olmstead Plan, establish and implement a public reporting on the progress made on the long-range and annual targets for reducing the institutional population, while increasing the number of individuals receiving community-based services and the associated funding; and

• Publicly report data on the number of people in institutional settings and on waiting lists for services who would prefer community living.

Miscellaneous Recommendations

• Expand the jurisdiction of the Justice Center to include nursing facilities and home care; and
• Meet the unique, and unaddressed, needs of Deaf-Blind individuals who require services and supports to live independently and fully participate in community life ($1.5 M).