Albany, NY – Today, Assemblymember Phil Steck and Senator Shelley Mayer held a joint press conference to highlight the importance of the Complex Care Act (A464A/S4462A), their legislation, which would allow family members of medically fragile children to become certified and financially compensated for the care they are already providing to their children.

“Under current law, medically fragile children are entitled to private duty nursing care paid for by Medicaid. The problem is that there is a chronic shortage of private duty nurses, and the existing state-allocated funding for them is not being utilized,” said Assemblymember Steck. “Because of this, parents are already providing the care that a private duty nurse would, but they are not being compensated for it. This creates an additional financial burden on families, making it harder for them to support themselves. I am proud to sponsor this legislation to ensure these parents receive the financial support they deserve.”

The legislation requires private duty nursing agencies to allocate at least 65% of their Medicaid reimbursement funds to directly compensate parents who provide care to their medically fragile children. The New York State Department of Health will review reimbursement rates twice a year to adjust for inflation. Additionally, the state would qualify for a federal Medicaid match, which would help fund the program.

“The Complex Care Act is a crucial step towards addressing the significant challenges and financial burdens faced by parents and families of medically fragile children. By allowing parents to become certified caregivers, this legislation ensures they receive adequate financial compensation for their care and alleviates the financial stress on families. With regular supervisory visits by registered nurses, it also guarantees that their children receive the expert care they need and deserve, without the worry of a shortage in healthcare providers, said Senator Mayer. “I am proud to support the Complex Care Act alongside Assembly Member Steck. It is crucial that we pass and sign this legislation into law this year, so that children can access essential care without delay, and families can receive the necessary support.”

A national survey of parents with medically fragile children found that more than half (52%) had to reduce their working hours, while 42% needed to take at least one leave of absence. Additionally, 31% had to turn down a promotion, and 21% left their job or retired early to provide the necessary care for their child. As a result, these parents often struggle to maintain employment while also facing higher out-of-pocket medical costs due to inadequate health insurance coverage.

Missy Miller, Councilwoman from the Town of Hempstead, NY and mother of a medically fragile child, shared her personal experience, “As a former Assemblywoman, I was personally impacted by the private duty nursing crisis, which forced me to step away from a job I loved. The Complex Care Act bill is a critical step in bridging the gap in care by allowing parents of medically fragile children to be paid for the care they already provide. This legislation would bring much-needed financial relief to families experiencing the stress of medical fragility. No parent should have to choose between their child’s care and financial stability.”

Janine Lampo, a dedicated advocate with The Voices for the Medically Fragile of New York and mother of a medically fragile child, shared, “There is no way you could ever plan for this medically fragile life. In fact, I never knew life like this existed before I had my son Mason. Seeing your baby intubated, with machines breathing for them, is something no parent should ever have to experience.”

Dr. Joanne Porter, a pediatric palliative care physician who has treated numerous medically fragile children across the Northeast, emphasized the challenges families face, “Caring for a medically fragile child is an unrelenting journey that requires immense emotional, physical, and financial resilience. Families navigate complex medical decisions, frequent hospitalizations, and the constant fear of emergencies, all while trying to provide a sense of normalcy for their children. The weight of this responsibility is profound, often leaving caregivers exhausted and isolated, yet their love and dedication never waver.”

To qualify for a federal Medicaid match, parents providing care to their medically fragile child must submit a care plan to the New York State Department of Health every 180 days, undergo regular supervision by a registered nurse, and utilize the electronic verification system. If the federal government grants New York State a waiver, the program will be funded equally by the federal and state governments, with each covering 50% of the cost.

The legislation is currently under consideration in both the Assembly and Senate Health Committees.