Advocacy Initiatives

We actively advocate for policy changes that benefit medically fragile children.

The Complex Care Assistant
A464/S4462

The complex care assistant act establishes a program that allows for family members, including legally responsible adults, of medically fragile children to fill gaps in home-care positions under the supervision and guidance of a registered nurse and Licensed Home Care Services Agency (LHCSA), providing a solution to the nursing shortage.

Many families of medically fragile children in New York are filling in for the lack of nursing care to keep their children at home and safe. Oftentimes, at the cost of the career of one or both of the parents, causing significant financial strain, exhaustion, and burnout. These families are learning to do intensive medical treatments that normally would be performed by a nurse without any supervision or support to prevent their child from being placed in a pediatric nursing home.

Many states across the United States are enacting similar programs successfully.

BILL A464/S4462

Gallery

Effective advocacy requires showing up in person. For many of our children, an outing can mean significant medical setbacks afterwards and families are simply surviving day to day, making planning next to impossible. Those of us who are able to show up are doing so, not just for our own families but also speaking on behalf of those unable.

The Complex Care Act will be life changing for our families across the state.

"It will allow me to help care for my son without worrying about the financial strain it is to miss/not work due to not having nursing coverage or another person qualified to perform his daily around the clock cares."-Marlboro, NY

"I had to take a totally different much lower paying job to meet my daughter’s needs. This would help us stay afloat while ensuring she is cared for properly. " Fayetteville, NY

"I was offered nursing but could not find anyone to help! So we have to do it on our own and when my daughter does not have school. I have to take off from my full-time job. Any assistance would definitely help us care for our daughter. "-Cheektowaga, NY

"We will be able to stop selling off everything we ever earned before our daughter's injury to just stay in our house. We went down to one car and having issues now & going to have to beg the community for help once again. This program would change my life in every single aspect. My husband and I are burnt out and under an incredible amount of stress right now." -Saranac, NY

"My husband had to retire early because we did not have enough nursing coverage. It would help tremendously with our income."-Grand Island, NY

"When my son doesn’t have a nurse I am solely responsible for providing all of his extensive medical care. This isn’t manageable due to not being able to work, lack of sleep, etc. "-White Plains, NY

"I was making a 6-figure salary, prior to my medically complex child being born. After his birth it became very clear I would not be able to perform my job duties safely. My son requires 24-hour care and monitoring; we are allotted 40 hours a week in attendant/nursing care, so either I can sleep or I can go to work, but not both. I now work a mere 8 hours per week and the financial hit to our family has been deep and we often have to borrow money from family members, particularly considering the extra costs of a medical child. If I were to be able to be paid for the care I give my child, it would help offset that loss of income. Many families like mine, have a parent who gave up a high-paying job to care for their child; if we could go back to work we would, but our child’s care, safety and health—their life!—demands we stay home. Please help this bill pass so parents like myself can be paid for the nursing care we provide to our children."-Rochester, NY

"Because I am the only back up care giver, I can't go to work and our family run business "went under" because of always tending to our fragile child. This program would help dirastically cover the loss of employment while I am always tending to my fragile child" -Marathon, NY

"It would give our family a peace of mind. We have had to adjust in so many ways, going from a two income family of 3 to a 1 income family of 5…. Finding a job willing to be flexible and understanding to the many many doctors appointments and short notice of days off or leaving early due to illness or the school not being able to accommodate a certain need that has come up; has been nearly impossible. We wouldn’t have to worry about the unreliable/unpredictability of the nursing staff. I am the only person who knows exactly how to care for my child the way she needs."-Clifton Park, NY