This guest post was written by Linda Molina, a lead at the New York Alliance for Developmental Disabilities (NYADD)

A decades-long nursing shortage, exasperated during COVID, has left New York State families with medically fragile children in an impossible bind. New York law does not allow them to be paid for their caregiving work, yet they are forced to give up jobs to help care for their loved ones at home,

Legislation introduced in the New York State assembly, the Complex Care Assistant (CCA) Act, could help change this reality. Introduced by Assembly Member Phil Steck (A9034) and Senator Shelley Mayer (S8599), both Democrats, the bill would establish a program enabling family members to become paid complex care assistants for individuals under the age of 21. If passed, it would be an important piece of the puzzle of how to solve this caregiving crisis.

Working to get the bill passed is the New York Alliance for Developmental Disabilities (NYADD). Its members understand that medically fragile children have complex care needs that require daily, and even hourly, nursing care — tasks described by the private duty nursing manual and ordered by their physicians.

CALL TO ACTION: To connect with other parents advocating for this legislation, follow Families for Parent Paid Caregivers on Facebook. To show support for the Complex Care Assistant legislation, click this link for an easy way to have your voice heard: Complex Care Care Progam For New York State.

Providing this care at home prevents long-term hospitalizations that result in drastically higher costs than those associated with paid home caregivers. Doing so also aligns with the American with Disabilities Act (ADA): In 1999, the Supreme court ruled in Olmstead v. L.C. that individuals with disabilities have a right to receive services in the most integrated setting appropriate to their needs.

CCA Details

The CCA creates a new discipline under a private duty nurse benefit that would allow a parent or family member to receive certification and be delegated tasks by a registered nurse through a home care agency, which would then provide ongoing support and supervision.

This would finally allow family caregivers the person-centered care promised by New York, provide financial stability for their families, and reduce reliance on other welfare services.

In the 2024 State of the Union address, President Biden asked us to “imagine a future with home care and eldercare, and people living with disabilities so they can stay in their homes and family caregivers can finally get the pay they deserve.” This is our goal!

CALL TO ACTION: A national group, Pay Family Caregivers National Coalition, is also focusing on this issue. Its petition so far has over 40,000 signatures. Add your name! Petition · Fix the Nationwide Caregiver Crisis: Pay Family Caregivers for Those With Disabilities · Change.org