30-Day Budget Amendments Will Hurt Disabled New Yorkers

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New Attacks on the Consumer Directed Personal Assistance Program Miss Their Mark

The Center for Disability Rights (CDR) is concerned regarding the proposed changes to the Consumer Directed Personal Assistance Program (CDPAP) in the Governor’s 30-day budget amendments. The proposed changes largely miss the opportunity to tackle the bad actors who have caused the program’s growth in costs. Instead of focusing on the unchecked increase of low-hour consumers by managed care organizations (MCOs) owned by managed long-term care organizations (MLTCs) and backed by private equity funding to advertise the program unethically, the proposed changes will result in severely limiting services to disabled New Yorkers.

The 30-day budget amendments impacting CDPAP are presented in two categories – CDPAP safety reforms and CDPAP long-term care efficiency and program integrity reforms. The stated goal of these changes is to save $100 million in FY25 and $200 million in FY26. While the administration has warned the program is too large to operate, and that it has moved away from the original intent to help a specific portion of the population, these proposals will not solve the problem. The final consequence of these proposals would be to potentially remove up to half of the individuals in the program without actually targeting the bad actors who have caused the bloat and ballooning financial burden of the program.

CDPAP is a Unique and Flexible Program to Cut Costs and Provided Personal Assistance

CDPAP was first established in 1995 with the aim of giving disabled individuals and those with chronic and severe health conditions better control of their care by allowing them to hire and manage their own personal assistants, also known as attendants. This program was designed to provide more flexibility than traditional home care for consumers who needed these services. Consumers are allowed to pick attendants whom they know and are comfortable with personally, sometimes family members or friends, improving their quality of life and making it easier for them to live independently in the community. The attendants benefit from having closer relationships with the individuals they assist and flexibility in the hours they work. The benefit to the State was a lower overhead cost by reducing administrative costs. Responsibilities of the consumers in the program included but were not limited to recruiting, hiring, training, supervising, and firing workers. The original implementation of CDPAP was done by local districts that could contract with vendors, including independent living centers (ILCs), to act as a liaison between the provider and consumer.

CDR Opposes the Elimination of Designated Representatives

One of the largest proposed changes in the 30-day amendments would be the elimination of consumers who utilize designated representatives from the program. Designated representatives have been included in CDPAP since its inception in 1995. There are different reasons designated representatives are selected. In cases where cognitive decline is expected, this helps prevent dangerous situations where an individual may not be able to fully understand some of the choices they will need to make. Having a designated representative is also critical to making sure children and older adults are able to access the program. Sometimes, a designated representative is chosen to help individuals when they transition from institutions and may need help in that transition. Other times a designated representative can act as a trusted advocate for the consumer in helping them manage their care.

The use of representatives has been part of the program since day one; if the State aims to restore the program to its original intent, this proposal will not help achieve that goal. These are often high-needs individuals who utilize representatives to keep themselves safe while exercising a high degree of independence.

Additionally, for ILCs that act as fiscal intermediaries (FIs), 36% of their consumer base currently use a designated representative. If this proposal goes through, these individuals will have to decide to either forego their choice to utilize a representative or be forced out of the program and potentially not receive services. Moreover, restricting care based on disability is illegal. As a service provided under a State Medicaid plan approved by CMS, CDPAP must be offered Statewide to any Medicaid recipient who meets the eligibility criteria. Recklessly cutting services for vulnerable consumers is not a responsible cost savings measure, nor is it safe.

Limiting Hours in the Name of Safety is Unsafe and Will Cause Harm to Disabled Individuals

Another proposal is to limit the number of hours an attendant could work in a day or a week. Limiting the hours an attendant can work won’t save money, but it will result in consumers losing services and entering institutions. MCOs are paid a flat fee rate for consumers. MCOs negotiate the rates they pay to FIs for attendant wages, benefits, and administrative costs. These rates are not sufficient enough to cover overtime. Limiting the hours an attendant can work will have no cost-saving effect in this situation because it is the MCOs who determine the rate paid to FIs. Any difference between what the state pays the MCO and what the MCO pays the FI is pocketed by the insurance companies. There are currently no pass-through regulations for these rates. When it comes to paying overtime costs, MLTCs do not receive extra payments from the State. Furthermore, they are not reimbursing FIs sufficient rates to cover overtime for attendants. This means this cost is being paid directly by FIs rather than the MLTCs or the State. This proposal would not provide any cost savings to the State.

Limiting the hours that a consumer can schedule an assistant is also counterintuitive when considering the crisis facing home care statewide. It is a well-known fact that there is a shortage of home care workers. If consumers require attendants to work longer hours, it is typically for two main reasons. There is simply no other alternative for help due to workforce shortages, or the consumer has complex needs and is only comfortable with a limited number of people being able to assist them. Limiting hours would make both of these scenarios worse. As we work to try and strengthen the workforce, having the State reduce how many hours an individual can work certainly will not solve the problem. By limiting hours, something that was never done before, the end result will be the reduction of services that a consumer is entitled to when they are unable to find additional help.

Making It Harder and Slower to Employ Workers Is Not Safe

Another part of the safety reforms is the proposal for the State to create and regulate minimum selection criteria and establish training requirements for attendants. It is unclear why this provision has been included, how it would equate to a cost-saving measure, or how exactly this relates to safety. With no details on what would be required training or how it would need to be implemented, it is difficult to understand how this could impact the program. It does, however, raise numerous concerns, including what barriers it may create to quickly implementing services and the potential to destroy the flexibility and original intent of the program to allow consumers to select and train attendants that fit their personal needs. Barriers added to limit this already depressed workforce further exacerbate the issue by creating a bottleneck of available attendants waiting to be approved for consumers who cannot go without assistance. Furthermore, it also raises the question of joint employer status for entities or people in charge of administering training.

CDR Supports Logical Reforms to CDPAP to Block Bad Actors and Corporate Greed while Returning the Program to Its Original Intent

The 30-day amendments include long-term care efficiency and program integrity reforms, including proposals to eliminate the conflict of interest between insurance companies that have a controlling stake in FIs and crack down on excessive and misleading advertising by managed care organizations. These proposals are just a start to addressing the problem of managed care organizations flooding the market with low-hour consumers while profiting from capitation rates that are not being fully expended on consumers.

In 2012, the State switched to a mandatory MLTC system. Around this time, realizing the incentive to bring individuals into the program at low hours, MLTCs started to funnel low-hour consumers to intermediaries they controlled. This was largely done through excessive and unethical advertisement of the program. This practice has swelled participation in the program and created record profits for insurance companies from the fixed rate they bring in for each individual in their network.

Additionally, the proposal to return to authorization in place of the RFO process is another sign that these proposals do not truly address the real issues within the program. The RFO was issued in 2019 to replace the prior authorization system. It was then stalled in 2021, with awards being issued in 2022, and still has not been fully implemented by 2024 as the State continues to deal with hundreds of legal challenges. With the botched rollout of the RFO process, it is clear the State has not yet figured out how to evaluate potential FIs. Going back to the authorization raises more questions than creates solutions. It will add further strains to the system by creating confusion and slowing down the ability of responsible FIs to manage the system.

Cuts to Administrative Rates Only Hurt Small Providers, Not Bad Actors

Reflected in the 30-day amendments is also the proposal to reduce administrative rates. When the State shifted to administrative reimbursement based on per member per month (PMPM) in 2021, it led to substantial cuts for FIs. Since this change, rates have never increased despite rising costs to FIs. Any increase in cuts for reimbursement rates would drastically impact small providers such as ILCs. Additionally, this proposal would not have the intended impact of limiting extreme and unethical marketing of the program because the MCOs who engage in this practice would be able to pull advertising dollars from other sources. Like the majority of the other proposals, this would target good actors while having minimal impact on larger FIs who primarily work with MLTCs.

Independent Living Centers (ILCs) are Not Bad Actors

Many of these changes will hurt ILCs that act as FIs, some of whom pioneered CDPAP. ILCs were originally selected to be part of this program because they are the most apt to understand the needs of the consumers who utilize the program. ILCs have been specifically acknowledged by the State in State law Section 365-f (4-a)(i)(A) as programs eligible to be FIs. This is because, as nonprofit organizations, ILCs do not put profits before people and disability-led organizations understand the challenges in accessing services and support. They also provide wrap-around services to support improved outcomes for consumers. Furthermore, there has been a history of the State recognizing the ability of ILCs to successfully take on this work, as well as a history of working with the State complete with reviews and audits, which has shown there have been no findings of conflicts of interest, questionable advertising, or fraud.

There are 11 ILCs, which are also FIs, who work with other ILCs to offer the program, representing 5,600 consumers enrolled in CDPAP. Stripping away the base of the consumers helped by ILCs is a short-sighted solution to long-term problems. When looking for solutions to improve the program, the State needs to include ILCs as a part of the solution. With 41 ILCs with over 50 offices across the State, ILCs are the perfect vehicle to manage the program.

Reducing Services Will Not Reduce Long Term Costs

Proposals in the 30-day amendments to reduce hours for consumers, limit services, and forcing arbitrary training requirements on attendants will only exacerbate worsening problems in our healthcare system. In addition to not addressing the core problems with CDPAP, many of these proposals would violate the rights of disabled individuals, directly contradicting the Olmstead decision and reversing any positive steps the State has or may take to improve the quality of lives of people with disabilities and aging adults.

This program has not expanded overnight, nor should it be surprising that it has become popular among people who require assistance. For years, the State has looked away while large insurance companies have profited from this and other programs meant to help vulnerable New Yorkers. Years of neglect by the State and abuse by insurance companies have caused an untenable situation. These proposals will hurt consumers in an attempt to slash costs as the State once again balances its budget on the backs of disabled New Yorkers.