Introduction

As a disabled individual, I need help with daily activities such as getting up, taking my medications, going to the bathroom and going places.  Too many individuals who cannot live without varying degrees of support are faced with the issue of getting the help they need every day and are often forced into long term care facilities.  I am one of the lucky ones because I am able to live at home in my community.  With this privilege comes the right to decide who helps me.  This is possible thanks to New York State’s Consumer Directed Personal Assistance (CDPA) program which allows disabled and elderly individuals to hire and manage their own aides through a Medicaid reimbursement program.  But, what will happen to my, and many other individual’s, ability to receive these vital services when Governor Cuomo significantly cuts and overhauls the program?  Our autonomy and independence will likely disappear as we are forced into institutional settings.

What CDPA is

The Consumer Directed Personal Assistance program was started as a grassroots effort in 1997 to enable individuals who need personal and medical care, to recruit, hire, train, manage, supervise and fire their own personal assistants while living in their own homes.  Such autonomy allows disabled individuals and those with long-standing illnesses to choose who they rely on to help them.  Any adult who is not “legally responsible” for a Medicaid consumer’s care and support may be a CDPA assistant for that consumer.  This means consumers can hire family, friends and other trusted community members instead of being assigned random assistants by traditional home care services. 

Unlike most unskilled aide programs CDPA aides may perform “skilled” care tasks that are traditionally only allowed to be performed by a nurse.  Such tasks could include, but are not limited to, suctioning, insulin injections, and administering oxygen or medications when the consumer cannot do it themselves.  While most state’s have a similar program, currently, in New York alone, about 70,000 seniors and disabled individuals employ over 100,000 personal assistants.  Aides are paid by Medicaid through fiscal intermediaries which are the organizations that handle the paperwork end of the aides employment.  Each intermediary has different benefits for aides and receives a small fee in return for handling the administrative end of the program.  With over 500 fiscal intermediaries in the state, every county has at least one option for consumers and their aides to register under. 

What the budget does

New York Governor Andrew Cuomo’s 2020 budget enacts amendments that will limit an organization’s ability to act as a fiscal intermediary and cuts approximately $75 million dollars from the program.  The Governor’s office explained that the cuts will supposedly only impact various fiscal intermediaries and will not impact aides payment or cut services for consumers.  

While the $75 million dollar cut may seem like an arbitrary number, it corresponds with the 2018 audit of the CDPA program by the state Inspector General’s office which  determined that over a four-year period, Medicaid had overpaid New York $74.8 million in reimbursements associated with the program.  The audit explains that based on their sampling of cases some intermediaries did “not provide documentation of services claimed, claimed reimbursement for services that were not authorized or supported, and claimed reimbursement for claims for which documentation was not completed in a timely manner”, among other issues.  The audit states that the responsibility of overseeing the program lies with the state and the fraud is the state’s fault because they did not properly manage the program.  The governor’s budget plans to consolidate fiscal intermediaries and establish uniform reimbursement for aide services. 

Effects

According to the Consumer Directed Personal Assistance Association of New York State, this budget cut would arbitrarily eliminate 90% of providers in the program on January 1, 2020 and cut critical funding by over 500% on July 1, 2019.  While we don’t know what the changes Governor Cuomo will end up making will look like exactly, his plan will almost certainly negatively impact the consumers and their aides.  Consumers and their families are very concerned that the consolidation of hundreds of intermediaries will leave a majority of caregivers rushing to re-register for the program.  This will likely cause lapses in staffing for consumers because aides cannot afford to work without pay.  Any major changes to the program would also be subject to approval by the federal government since Medicaid is a federal program, leaving the entire program in the hands of the national government rather than New York’s.

Such lapses would quickly drive consumers into long term care institutions such as hospitals and nursing homes.  This would end up costing the state substantially more money because facility care is always more expensive than in-home community based services.  A lapse in, or potential loss of, services for individuals means an automatic loss of autonomy and independence.  For many people, this means they will not have the support they need to go to school, college, work or be involved in their communities at all. 

Conclusion

While I do not dispute the need to limit Medicaid fraud, simply cutting funding for the program will not fix the issues the Governor thinks it will.  Oversight needs to be improved and fiscal intermediaries should be better trained to administer the program.  The governor should be working to increase CDPA aide’s wages so it is a viable career option.  He should be working to ensure aids have healthcare and benefits.  He should be working to improve and expand access to the CDPA program so more individuals can enjoy the freedoms they deserve as citizens of New York and the United States.

If Governor Cuomo wants to call his 2020 budget a Justice Agenda, he must re-examine how this $75 million dollar cut fits that definition.  It is not a just action for people who rely on these services: people like me, wounded veterans or the elderly.

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Erin Vallely lives with a rare form of muscular dystrophy and is a proud wheelchair user. Having graduated with a B.A. in Sociology and Anthropology with a Spanish minor from Wells College in Aurora, NY, she will soon pursue her Masters of Social and Public Policy at Empire State College with a focus on disability rights, advocacy, and healthcare policy. In her spare time, Erin enjoys reading about other people’s experiences, supporting other minority groups, and traveling.

Published on May 13, 2019