The future is uncertain for a critical piece in the health care infrastructure of New York State.

Two hundred and fifty thousand disabled New York State residents are cared for in their homes by family members and close friends through the New York State Consumer Directed Personal Assistance Program (CDPAP). A caregiver can be paid up to $38,000 annually by the state to care for a disabled, sick, or elderly relative or loved one at home. At a time when over 70% of individuals needing care prefer to remain in their homes, CDPAP is immensely popular. It enables individuals to live with their families and avoid being institutionalized in a facility such as a nursing home. CDPAP realizes enormous cost savings to families and taxpayers through the New York State Medicaid Program. 

Participants in CDPAP include parents with disabled children, adult children with an elderly relative, and individuals with developmental and physical disabilities whose needs prevent them from living on their own. Many CDPAP individuals participate in day programs or Independent Living Centers (ILCs). The CDPAP funds enable the state's disabled residents to benefit from living at home and being cared for by loved ones. 

Nearly 700 fiscal intermediaries like the ILCs and others administer the CDPAP statewide. As participation in this very popular program increased, Albany identified its soaring costs and a concern over corruption in the current process. 

In a proposal scheduled to take effect on October 1, 2024, New York State is planning to upend the current CDPAP system by replacing all 700 fiscal intermediaries with one out-of-state contractor. Bids were opened earlier this summer. But some regional contractors that might have been interested announced they were declining to apply, citing lack of feasibility. For example, the contractor would be required to front the money to caregivers and then apply to New York State for reimbursement. Amounting to an estimated $3 million per 10-day cycle in a $9 billion industry, few takers were expected.

Commercials began airing across the state urging residents to call their lawmakers and stop the change from happening. 

A lawsuit was filed by current ILCs and other community intermediaries hoping to pause the deadline and delay this proposal. ILCs derive up to 80% of their operating revenue from CDPAP. The litigants are concerned about the impact on the lives of New York's disabled residents if all fiscal intermediaries, including ILCs, are put out of business in favor of a large corporation from out-of-state. They foresee the quality of life for disabled residents will profoundly suffer without Independent Living Centers in our communities. They want more transparency in the system. They argue lawmakers and stakeholders should be given the opportunity to advance other solutions.

A counterproposal bill has been introduced in the NYS Legislature. It preserves the current CDPAP structure but would address concerns about potential bad actors in the program. The bill calls for common sense guardrails, standards, and licensing requirements on the existing intermediaries, and training for caregivers. Legislators in both parties have expressed their desire to have time to consider and vote on this and other alternatives.