The Complex Care Assistant Bill is a pivotal piece of legislation that aims to address and recognize the challenges faced by families with a medically fragile child who live in New York. This bill will ensure that those who require complex medical care receive the appropriate support and resources through trained complex care assistants.

Why am I personally invested in whether the Complex Care Assistant Bill is finally passed in New York after stalling and only coming close last year? 

Let me tell you…

My son Shane was diagnosed with leukemia in 2021, shortly before his 9th birthday. Six months into treatment, he had trouble walking and started shaking. Upon being hospitalized, we were told he was suffering from toxicity due to his chemotherapy or brain radiation treatment. Although we were told that the condition would be temporary, his condition worsened and he was left unable to stand, sit, talk or communicate in any way, He was ultimately diagnosed with necrotizing leukoencephalopathy, a severe brain injury, and spent nearly a year in various hospitals. 

While that year in the hospital was one of the greatest challenges of my life (and for Shane), coming home to face the reality of caring for a medically fragile child like mine, at home, was an even greater one.

In many other states, parents of medically fragile children can be paid to stay home to provide care for their child but in New York, they are not eligible for a similar benefit until the child turns 21.

This needs to change. 

For many families, and I fear even mine, a child will die before the child reaches that age. The Complex Care Assistant Bill aims to relieve some of that burden for families with a medically fragile child. The parent(s) would receive training to provide the skilled medical care that we have already been providing. It’s important to note that this is a small community and would apply only to families with a medically fragile child. The Complex Care Assistant Bill previously had a lot of support but was stalled and did not  pass last year. 

Shane is now 13 and has severe cognitive and physical disabilities. He uses a wheelchair, and he is mostly fed formula through a feeding tube in his stomach. He is fully dependent on me for all of his care, including administering medication, bathing, changing and all other activities of daily living. I coordinate all medical and school appointments and my phone contacts now include pharmacies, medical companies, and physical therapy places. I spend my spare time ordering all of these weird medical things like medication bottle toppers from Amazon and have a basement filled with medical equipment because the layers of red tape to get it are so great that I gather what I can, when I can. I lay awake at night terrified of the future. 

All of this while dealing with the emotional toll of our day-to-day life. 

I was forced to leave my job of 20 years in order to be home to take care of Shane. This is a choice that many parents have to make, otherwise our medically fragile child would wind up hospitalized. Now I only have ONE full-time job and it's taking care of Shane. 

If it seems like you don't hear from parents like us all that often, it's because we are tired. Our children live with chronic and severe disabilities and require constant care. Our families often face overwhelming challenges that are physically, emotionally and financially taxing. We are desperate to keep our heads above water, facing significant financial strain. Passing the Complex Care Assistant Bill would finally recognize the incredibly difficult work that we are already doing and provide the dignity of care at home for our children. 

By passing this bill, New York can join many other states that have similar legislation to recognize the comprehensive and compassionate care that we are providing to our children. 

It takes a village....and we need a village to finally be seen and supported---- by passing the Complex Care Assistant Bill. We urge the New York State to consider the benefits of this critical legislation and act swiftly to pass the Complex Care Assistant Bill. Join us in advocating for those who need it most—sign this petition today!