The Disability Priority Agenda

The Disability Priority Agenda
By Phil Prehn, ARISE Systems Change Advocate

Every year, ARISE works with the other 40 Independent Living Centers in New York State to advocate for what we call the Disability Priority Agenda (DPA)—what parts of the proposed NYS budget are most important to the disability community.  We then schedule meetings with our local delegation to the NYS Legislature to inform them how the DPA has a direct impact on their constituents.

Our seventh and final issue is Government Operations.

The Office of the Chief Disability Officer (CDO) was established to help ensure a voice in state government for all people with disabilities. We recognize that the state needs to address several important disability policies and with additional resources the CDO is the best place to do so.

ARISE and NYAIL are supportive of the following Government Operations that assist people with disabilities and promote Independent Living: We strongly support the expansion of the Office of the Chief Disability Officer and urge them to:

  1. Completion of a formal Olmstead Plan ( $250,000.) The U.S. Supreme Court’s 1999 landmark decision in Olmstead v. L.C. found the unjustified segregation of people with disabilities is a form of unlawful discrimination under the Americans with Disabilities Act (ADA). People with disabilities were found to have the right to receive services in the most integrated setting appropriate to their needs. NYS has never completed the plan to ensure full compliance with the Olmstead decision.
  • Governor Hochul has made disability employment a top priority for the administration. In her Executive budget, the Governor is proposing a $6.7 million investment to support a multi-agency effort led by OPWDD to increase employment opportunities for people with disabilities. This funding should incorporate existing proposals such as a small business tax credit to support employment of people with disabilities A.4733 (Rajkumar) / S.1555 (Addabbo)

Our sixth issue is public transportation:

In many parts of ARISE’s service area, alternative transportation services are either non-existent or prohibitively expensive. Limited availability of accessible transportation is a major barrier faced by people with disabilities, often leading to unemployment, lack of access to voting sites, and isolation from friends, family, and full community participation.

The Americans with Disabilities Act (ADA) requires counties to provide accessible paratransit service to disabled people who are unable to take the fixed route bus service. At minimum, paratransit service must be provided to disabled people within three-quarters of a mile of the closest bus stop. This was always meant to be the floor, not the ceiling. As fixed route bus lines are eliminated and other transit models are becoming more popular, people are at higher risk of being cut off from paratransit service. This leaves disabled people stranded, without services, or the ability to work, receive services, attend houses of worship, or medical appointments.

The State could address this by increasing the minimum service levels provided to people who rely on paratransit. Suffolk County for example, has exceeded the minimum by eliminating the bus stop distance requirement and extending service countywide to all people with disabilities. Other counties have also expanded service beyond the federally required minimums, but we need state coordination and support so more people with disabilities can be fully integrated into their communities. Funding is currently being allocated through the Governor’s Innovative Mobility Initiative, which will provide $10 million in funds to non-MTA transit authorities to expand service offerings. The five-year pilot initiative will allocate $1 million to each of the seven largest nonMTA systems, and smaller systems will be jointly eligible for a competitive fund of $3 million. We strongly support this funding to focus on paratransit.

NYAIL urges the State to require counties to expand paratransit service beyond federal ADA minimums with state funded support from the Governor’s Innovative Mobility Initiative.

Our fifth issue is the Long-Term Care Ombudsman Program.

Long-term care ombudsmen are advocates for residents of nursing homes, adult care facilities and family type homes. Ombudsmen provide information and assistance to long -term care residents and their families to attain quality care. They are specifically trained to investigate complaints and resolve problems. Under the Federal Older Americans Act, every state is required to have an Ombudsman Program that addresses complaints and advocates for improvements in the long-term care system. ARISE is one of 15 Regional Program Sponsors in NYS—managing a largely volunteer staff.

The NY State Comptroller’s Office issued a study on the program two years ago. The report stated that the work done was effective—but that the extremely underfunded program could only recruit and train enough volunteers to reach less than half of the people in nursing homes in need of Ombudsman services. As a result of this report, last year’s budget was slightly increased—an additional $2.5 million.

The additional funding granted last year allowed the region that ARISE manages to hire 2 additional full-time Ombudsman.  ARISE’s LTCOP program was able to increase facility visits by 24% and increase complaint investigations increased by 40% with its share of the additional funding provided in last year’s budget. Why would the Governor see the increased productivity and then RESCIND that small increase?

NYAIL urges the State to increase the budget for the statewide Long-Term Care Ombudsman program by the $15 million that the NYS Comptroller estimated would be necessary to fully staff the program to meet the needs of all residents in facilities in need of the Ombudsman services.

Our fourth issue is the Consumer Directed Personal Assistance Program

Every year, the Governor releases a first draft of the state budget early in January. The Governor may choose to issue amendments to that budget within thirty days of its release. This year, Governor Hochul issued a long list of 30-day amendments to her draft budget. Included in the amendments are changes to the Consumer Directed Personal Assistance Program that would make severe cuts to the program and make it nearly impossible for many current participants to remain in the program. In addition, NYS Independent Living Centers such as ARISE have helped serve as fiscal intermediaries for its consumers in the program. The changes would also radically reduce the number of fiscal intermediaries in the program, largely excluding Independent Living Centers and other agencies with years of service to the disability community, as well as knowledge of disability culture.

NYAIL urges the State to preserve the role of Independent Living Centers in the future of the Consumer Directed Personal Assistance Program and reject proposals that infringe on consumers rights.

  1. Preserve the role of Independent Living Centers in the future of CDPAP. This has always been the State’s intent and the legislative language exists to accomplish this. Irrespective of the process to identify providers moving forward, RFO or designation by DOH, ILCs should be ensured a contract to continue delivering FI services if they elect to.
  2. We oppose the ban on allowing a Designated Representative (DR) to direct care of a CDPAP participant. Designated representatives have been part of CDPAP since the program was created. DRs play a critical role in CDPAP, allowing those whose disabilities prevent them from self-directing their own services to have someone perform that role instead. This particularly impacts children, people with developmental disabilities, those with cognitive disabilities, and those who are non-verbal or face a language barrier.
  3. We oppose state-mandated training for CDPAP aides. This is a direct contradiction to the intent of the program, which is to give the consumer or their DR full responsibility for recruiting, hiring, training, supervising, and terminating their own staff. This proposal will also likely make it harder to recruit aides and cause delays in services that are already facing a crisis in available aides.
  4. We oppose setting maximum daily and weekly limits on the hours PAs can work. Yet another foolhardy scheme to attempt in the middle of a crisis in home care due to a shortage of workers. The federal and state overtime requirement already impose a practical limit on hours, as many FI’s do not allow overtime. Some consumers want or need aides to work overtime, and if the CDPAP FI approves it this should be left to the consumer and the PA.  

Our third issue is Health Care

ARISE supports several pieces of legislation that need to be passed in conjunction with the New York State budget to improve the health care systems that people with disabilities rely upon to live healthy, safe and independent lives: 

1. The Home Care Savings and Reinvestment Act (A.8471 / S.7800) will Improve our Medicaid home care program by removing the private Managed Long Term Care companies the state hired to run our Long-Term Care programs. These private companies promised increased services and cheaper costs. Instead, we have companies cutting back on all kinds of services to patients to keep the state’s money in their pockets. Costs haven’t improved either. Replacing the private companies with a care coordination/fee-for-service model will allow the state to focus on the needs of people in the program.

2. Repeal cuts to eligibility for community-based long-term supports and services in Medicaid (A.6346/S.328). The previous Governor attempted to make cuts to Medicaid Long-Term Care in 2020-21 budget. His cuts would require people to prove that they need assistance with physical maneuvering in at least three activities of daily living (ADLs) to qualify. These cuts would eliminates Level I home care, which provides many people with vital assistance with activities such as cooking and cleaning and other less invasive assistance. The federal government barred NYS from making these cuts during the pandemic—but they are just as harmful now.

3. We strongly oppose eliminating “prescriber prevails” which jeopardizes access to necessary medications. The state budget is asking to overturn the longstanding policy of “Prescriber Prevails” in the Medicaid program. In order to save money, the state is asking for permission to allow Medicaid bureaucrats to change prescribed medications from a patient’s health care provider to less expensive alternative versions. Different individuals can have very different responses to different drugs in the same class. Sometimes only a particular drug is effective or alternative drugs may have unacceptable and dangerous side effects. Prescribers are in the best position to make decisions about what drug therapies are best for their patients. NYAIL urges the legislature to recognize the importance of specific prescription drug combinations and protect provider prevails.

Our second issue is Independent Living.

Independent Living Centers are dedicated to helping people with all types of disabilities live independently in our community. We are committed to empowering people with disabilities to take charge of their own lives–a majority of our staff and board of directors are people with disabilities.

Every year, ARISE works with the other 40 Independent Living Centers in New York State to advocate for what we call the Disability Priority Agenda (DPA)—what parts of the proposed NYS budget are most important to the disability community.  We then schedule meetings with our local delegation to the NYS Legislature to inform them how the DPA has a direct impact on their constituents.

ILCs provide a wide range of critical services based on local needs, all of which are aimed at addressing the social determinants of health: education, employment, housing, transportation, and other independent living skills.

We are calling on our partners in state government to correct a history of inadequate support to the network of Independent Living Centers, currently numbering 41 centers across NY State. Every year, we serve over 100,000 people with disabilities across NY State. We are seeking annual funding of $18 million for the entire network and ensuring that ILC’s are included in any cost-of-living adjustments (COLA’s) provided to human services agencies moving forward, as proposed in A.8437 (Hevesi) / S.7793 (Persaud).

Our first issue is Housing

The main housing program we advocate for is called Access to Home. It is the only NYS program available to help people finance repairs to their homes to make them more accessible. In 2011, the total budget for this program was cut from $4.5 million annually to a paltry $1 million annually. This amount will fund less than 150 ramps for the entire state. Last year, saw the first increase in its budget—to $3 million annually.

Unfortunately, the Governor has taken back last year’s increase and again proposes a $1 million budget for this year. We are advocating for a total Access to Home budget of $10 million.

Access to Home is an important program administered by NYS Homes and Community Renewal (HCR) which provides funding for home modifications allowing individuals with disabilities and older New Yorkers to stay in their homes and out of costly institutions. For many people, the addition of a ramp to their front door makes the difference between being able to leave the house and being homebound.

We urge the Legislature to increase HCR funding to $10 million to ensure availability of home modification services statewide.  In many places in the state, including Madison and Cayuga counties, there is no other program available, and people do without essential home modifications. An investment in Access to Home will help older adults, especially those under age 60 who are excluded by other programs, and people with disabilities around the State will remain in their home and out of institutions.