Authorizes Medicaid coverage for the complex care assistant program

Showing the cosponsors who are on Agora, A to Z. The official record may list more.

• Democratic28
• Republican27

This bill has cosponsors from more than one party.

Shown in neutral colors by design; Agora is non-partisan.

◆ The sponsor's argument

Why Shelley Mayer says this is needed

Since the COVID-19 pandemic, the home health care staffing shortage has reached crisis levels. Nowhere is this felt more than by parents of medically fragile children who require a private duty nurse to attend to their children's daily needs. Currently 50 to 70% of private duty nurs- ing shifts in the U.S. go unfilled.(1) According to the 2019-20 New York State Profile of Children and Youth with Special Health Care Needs (CYSHCN), defined as "children who have or are at increased risk for a chronic physical, developmental, behav- ioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children general- ly"(2): Families of CYSHCN face more financial strain and spend more time coor- dinating their child's care than families without a CYSHCN. One in 10 families with CYSHCN reported spending at least one hour per week coor- dinating their child's health care. Families of CYSHCN were more likely to reduce or stop working due to their child's health, have high out-of- pocket medical expenses, and have problems paying medical bills. Nine- ty-nine percent of NYS CYSHCN have health insurance coverage all year; however, families of CYSHCN were less likely to have adequate health insurance or insurance benefits that meet their child's needs.(3) According to a 2019 analysis in Health Affairs, Parents of chronically ill children are less likely to work more than twenty hours per week and more likely to participate in casual than in regular employment compared to parents with otherwise healthy children. A national survey of family caregivers of children with a rare disease reported that 52 percent of family members had to go to part-time work or cut hours, 42 percent took a leave of absence, 31 percent turned down a promotion, 23 percent lost a job benefit, and 21 percent gave up working or retired early to meet the care needs of their children.(4) Currently, the money allocated by the state for private duty nursing is not being utilized by providers because of a severe staffing shortage of private duty nurses. Many parents must leave employment to ensure care for their children, resulting in even more financial hardship for these families. New York's Medicaid program currently permits eligible adults to be cared for by a family member, but does not permit care of medically fragile children by a family member. To ensure the safety and quality of life for such children and their families, it is time for New York State to allow family members to be certified and paid to provide this neces- sary care.

This is the sponsor's own case for the bill, quoted from their memorandum. It is not Agora's description of what the bill does.