Parents of medically fragile children packed the halls in Albany this week, pressing lawmakers after a proposal to let legally responsible adults train and be paid as complex care assistants quietly died in the State Assembly. Advocates say the stall leaves families choosing between scarce private duty nursing, quitting jobs to provide round-the-clock care, or sending children who should be at home into institutional settings.
The Complex Care Assistant measure, sponsored by Assemblyman Phil Steck, would authorize Medicaid coverage to certify family caregivers and reimburse agencies that employ them. As reported by Spectrum News, Steck said the Senate had already passed the companion bill, but the Assembly never moved it to a final vote before the legislative session ended.
“This is not just for my family; it is for all the families that are behind us here,” said Linda Molina, co-founder of Voices for the Medically Fragile of New York, speaking at a Capitol gathering. Shannon La Vigne, another co-founder, told reporters that some parents are quitting work, remaining in abusive situations or becoming homeless because they cannot secure the hours of private nursing their children need, according to Spectrum News. Advocates also said some families have uprooted to Massachusetts in search of programs that pay family caregivers.
What the bill would do
The legislation would create a certified "complex care assistant" role, require in-person training and testing, and place trained family assistants under the supervision of a registered nurse while operating as part of New York's private duty nursing Medicaid benefit. It spells out allowed high-tech tasks, including ventilator care, tracheostomy care and enteral feeding, and sets minimum reimbursement rates for agencies that employ the assistants. The bill also requires the Department of Health to seek any necessary federal approvals and to recertify care plans on a regular schedule, as detailed in the bill text, available from the New York State Senate.
Why some lawmakers balked
Lawmakers who voted down or stalled the measure raised concerns that a family-paid caregiver program could repeat problems seen in New York's consumer-directed programs, which have faced operational disruptions and intense budget scrutiny during recent transitions. Reporting and advocacy records about the Consumer Directed Personal Assistance Program (CDPAP) and its statewide overhaul document implementation headaches and fiscal pressures that legislators say they want to avoid. NY Health Access has compiled coverage of those issues along with the litigation and policy debates that followed.
What comes next
Supporters say they will keep pushing for a narrower, tightly supervised pilot that addresses staffing shortages without opening the door to fraud or runaway costs. Assemblyman Steck and allied advocates have been promoting variants of the idea in press releases and committee memos for more than a year and say a carefully designed, federally compliant rollout is the priority. The New York State Assembly has posted a Steck office release that outlines the policy rationale he has been offering to colleagues.
For now, families say they will return to budget hearings and next year's session with the same plea: if the state cannot secure reliable private duty nursing, it should let trained parents receive modest compensation to keep sick children safely at home. Advocates and lawmakers on both sides say the challenge is finding a program design that preserves care at home while protecting Medicaid dollars from misuse.
