Rocky road ahead for some citizens with disabilities 

Sarah K. Lanzo, Independent Living  

June 28, 2019


 "… out of the frying pan … into the fire."

— Thomas More, 1532, with contemporary spelling imposed


If you were with me in March, you read in detail about a vital program for individuals with disabilities who require care aides to remain in their homes, that enables them to hire and control their own attendants and frees them from having to live in nursing homes or institutions. Known as Consumer-Directed Personal Assistance Services (CDPAS), this program currently saves hundreds of millions of dollars of taxpayers’ money that was previously spent on more expensive institutionalization.

In case you missed that article, let me repeat a few sentences to show how this all works: CDPAS is a state program in which [about 700] Fiscal Intermediary agencies (FIs) across the state identify Medicaid recipients who are self-directing in handling their affairs, then instructs them how to hire, train, monitor and dismiss their own Personal Attendants (PAs). The PAs provide home care, possibly including cooking, cleaning, bathing, dressing, shopping, light housework and so on. The FIs handle the vetting, benefits, taxes, and payroll aspects, to satisfy requirements of federal, state, Medicaid and other labor and insurance laws and regulations, also securing the attendants’ rights, (Workman's' Compensation, etc.).

The program here in Niagara County has been an impressive success, with only one agency providing over 220,000 hours of home care, just in 2018, the equivalent of 110 full-time jobs; and thereby liberating many individuals whose disabilities do not permit them to live in their own residences without assistance.

Take a moment to look that over again. Whoa! A program as intricate and precise as a fine watch and pretty darned impressive, I say!

When the New York State budget was being hashed out in March, disability advocates sounded the alarm, as Governor Andrew Cuomo was proposing to "save money" by reducing CDPAS. The voices of consumers were partially heard by the Legislature, who passed a bill retaining the program, but they were unable to prevent the Governor from putting in place plans to cut the funds used for running the program by $150 million — about half what they've been receiving, effective July 1.

This change will reduce the FIs' service staff by 60% or more, restricting their ability to: teach consumers how to hire and screen potential assistants; provide member and PA orientation; process payroll; monitor waste, fraud and abuse; administer people’s health care, Workers Compensation and other benefits; and comply with many more mandatory employment taxes and requirements. The resulting tremendous delays in service will bog down the process, preventing thousands of people with disabilities from staying in their homes, and resulting in many hundreds of them being forced back into institutional care.

At this writing, the state Department of Health has not served formal notice on how deep the rate reduction will be, nor how the changes will affect the business of Fiscal Intermediaries. ILNC does not know if it can continue serving the 200 CDPAS consumers in Niagara County, or if it makes more sense to phase it out.

When our family members and neighbors are forced into institutional care, the state Department of Health indicates it will cost state taxpayers an average of $125,000 per person per year. Others may receive traditional in-home care — with a rate higher than CDPAS — in which the consumer will have little or no say in the services they receive. Hundreds and hundreds of Personal Attendants from CDPAS will lose their jobs.

Advocates across the state are calling for Governor Cuomo to direct the health department to delay reimbursement changes until 2020, providing time for a more thoughtful collaborative process to enable the state to achieve savings without decimating our friends, neighbors and family members' right to live in our neighborhoods, work in our communities, and engage with our society as equal members of our great country. Brainstorming and compromise — what a couple of concepts!


Sarah K. Lanzo is the director of Independent Living of Niagara County, a member of the Western New York Independent Living Inc. family of agencies that serve individuals with disabilities. For more information, call 284-4131, extension 200.