The following is from a press release put out by 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.

With only a few weeks left in the session, NYADD asks why State Senator Gustavo Rivera, chair of the Senate Health Committee, and Assembly Member Amy Paulin, chair of the Assembly Committee on Health, have not put this issue on their agendas.

Legislation introduced in the New York State Assembly, the Complex Care Assistant (CCA) Act — introduced by Assembly Member Phil Steck (A9034) and Senator Shelley Mayer (S8599), both Democrats — 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.

“Providing this care at home prevents long-term hospitalizations that result in drastically higher costs than those associated with paid home caregivers,” said Linda Molina, parent, advocate and NYADD Regional Lead, in the release. “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.”

“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.” Said Shannon Reed LaVigne, also the parent of a medically fragile child and NYADD Regional Lead. “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 social services.”