Jackson's Story: Healthcare is a Right

By Peter Witzler

I live in Maryland with my wife Lisa and our sons Teddy and Jackson, along with our rescue dog Stella. We are a huge Marvel family and try to watch every movie in the theater. We also enjoy travel, and after a four-week trip in 2020 in a rented RV, we decided to buy our own. One of our most amazing adventures was to Glacier National Park during the Perseid meteor shower. It’s a Dark Sky Park, and the view was incredible. 

Teddy is 13 and he’s a huge fan of football and lacrosse. He’s also into anime, and spent a lot of time with LEGO when he was younger. Teddy is a really accomplished cook and baker. He won a blue ribbon for his cookies at the county fair this summer. 

Jackson is ten and he’s also an athlete and his favorite sport is sled hockey. He spends a lot of time writing and telling stories. He’s extremely creative, although he can be stubborn in school. We’re glad to be raising such an independent guy even if sometimes he makes life a little more difficult for himself because of his strong will. 

Jackson was born with spina bifida, which came as a surprise to us since it didn’t show up in his prenatal examinations. When he was born, the whole room was silent, and we immediately got transferred to Children’s National. We later moved his care to the Children’s Hospital of Philadelphia. 

He’s needed several surgeries and will continue to need surgery for his scoliosis and other issues. Most of the time he relies on a wheelchair for mobility although he can walk with the help of braces. At night, he uses BIPAP to manage his severe central and obstructive apnea to make sure he keeps breathing while asleep. 

Thanks to the investments in care we made early on for Jackson, he is growing into a very independent kiddo. This year he was able to go to Camp Spifida, which is dedicated to kids with spina bifida, allowing them to be around people like them and normalizing their needs. He came back wanting to do even more for himself. He puts on his BIPAP by himself, for example, and manages his own braces. That was a really cool opportunity. 

My family have been proud union members for four generations. My great grandfather was a mine worker, my grandfather was a glassworker, my dad is a retired auto workers pipefitter, and my mom is a retired lunch lady. At the time Jackson was born, I was working for the National Education Association and had excellent insurance. My insurance coverage throughout my career supporting unions has been very good. That insurance has covered his care and ongoing needs, through so many hospitalizations, surgeries, therapies, supplies and more. As a million-dollar baby, Jackson wouldn’t have survived without this comprehensive insurance coverage.

You shouldn’t have to win the union lotto to get the support and services Jackson does. You should never be on a waitlist for care, period.

When he first came home, he received Medicaid-funded speech, occupational, and physical therapy at home, and we also received training on supporting him with the therapies he needed to meet developmental milestones. The same training for Jackson’s nurses meant that my wife and I could return to work knowing that he would be in safe hands.

This support allowed us to invest in his health care early on, setting him up for a life as an independent, confident kid who is doing well into school and will grow into adulthood. Jackson will be able to live on his own in a place of his choosing and have control over his life. Even though we don’t use Medicaid services right now, we know that they will be a key ingredient in supporting Jackson to live independently. 

I have always believed that healthcare is a right. Disability has always been present in my extended family. One of Jackson’s cousins has spina bifida, and one of my aunts was institutionalized because my grandparents did their best, but the systems she needed, like the ones Jackson benefits from, just weren’t available. No family should be in that position.

You shouldn’t have to win the union lotto to get the support and services Jackson does. You should never be on a waitlist for care, period. And you shouldn’t have to fight with Medicaid to get someone to help you at home when there’s a clear medical need for it. There’s a huge administrative burden for so many families too, so you have parents dropping out of the workforce to care for kids or people who are eligible but afraid to apply.

Medicaid funding cuts will absolutely affect kids who rely on this program and deserve health care. They will also indirectly harm Jackson and other kids like him; any time you’re cutting funding like this, it cuts into the medical system as a whole, from the physical therapists that help Jackson to the hospitals he relies upon for care. We also know that medicaid services are going to be in important piece of the services and supports Jackson will need to live independently as an adult. We'll always fight to protect Medicaid for kids like Jackson, now and in the future.