Audrey's Story: Medicaid Keeps Kids and Families Together

by Sarah Bloom Anderson

My name is Sarah Bloom Anderson and I live in Columbus, Ohio, with my husband Ryan and our children, 13-year-old Audrey and her ten-year-old little brother.      

We are so lucky to have Audrey in our lives! She is beloved not just by her family, but by everyone she meets. This silly Muppet-lover is full of such compassion and love that she is an amazing and cherished friend. Her smiles and joy are infectious. She also leads a very active life. She dances, does equine therapy, and plays baseball in the Miracle League, where she loves hearing the roar of the crowd. Her nickname is “Turbo,” after the snail that goes fast. Audrey’s equine therapy has been an amazing journey for her. She went from being scared of all animals to seeing how calm and gentle horses are, and transferring that to being comfortable around and seeking out each animal that crosses her path. Audrey’s life is so big!

When Audrey was around four months old, we realized that our baby girl was developing some significant medical issues, which years later was diagnosed as      PURA Syndrome, a rare genetic disorder. In Audrey’s case, she has intellectual disabilities, but also experiences seizures, cerebral palsy, vision impairment, mobility difficulties, and digestive problems. She’s also nonverbal, but very      talkative via a speech device as well as gestures and expressions that are very readable to those who know her. In the last year, she got a g-tube for her medications, which means her seizures are better controlled and she’s even gaining some weight after years of struggling to stay on the growth chart. 

Historically, and until the not so distant past, medically complex, intellectually disabled children like Audrey were often put in institutions because of their high level of care needs. They didn’t get to live at home with their families, where they are celebrated and much loved. They also didn’t get to go to school where they could socialize with other children and develop critical life skills. They didn’t get to be a part of the community, where their contributions would have been invaluable. 

Thanks to our Medicaid waiver, Audrey is at home with us. The home caregiving support we get is crucial to keeping her safe and well at home.  A typical babysitter can’t provide the level of care Audrey needs to be safe, and we had a lot of trouble finding and affording someone to care for her. With her Medicaid coverage, she’s getting 40 hours of care a week over the summer. That means that I can work, instead of leaving the workforce to be a full-time caregiver.

At school, Audrey receives needed therapies such as speech and occupational therapy, and spends her time in mainstream classrooms with other kids as well as in special education settings. She has so many friends and is very popular; whenever we’re out and about in the community, other kids come up to say hello and have conversations with Audrey–who does not answer back except with smiles and hugs. She’s an important part of the community. 

Getting support at home has also been crucial for allowing us to work outside the home, instead of having to focus all our energies and resources on Audrey’s care. My husband was recently able to become a small business owner with his own home renovation business. I apply my skills and legal experience to my work at the City of Columbus, where I am able to help keep the city going thanks to Medicaid. 

Medicaid doesn’t just help us now. It also helps Audrey prepare for her future. When she’s finished school, she’ll still need supports in adult day programs as well as work programs that keep her out in her community with people who love and care about her. Medicaid pays for these programs, too. Without these, she wouldn’t have opportunities to be out living a valuable life in her community, and families like ours wouldn’t be able to keep working. Or she might become a ward of the state living in an institution. 

I often hear that cuts to Medicaid are essential to prevent fraud, but that’s not how it works. Fraud in Medicaid is primarily on the provider side, and cutting funding to the program won’t address that fraud; if there’s wrongdoing in the system, it has to be addressed at the actual source. Medicaid cuts will just make life so much harder for medically complex children and their families. And if we don’t have the support to care for Audrey at home, she becomes a ward of the state, which wouldn’t just mean that she couldn’t live in the community. It would also be very expensive for the government. 

Something I really want people to understand is that Audrey’s life has value just like any other person. Her value, and that of other medically complex children, isn’t determined by her ability to work. Audrey doesn’t need words to be a good friend. She doesn’t need to run to be able to dance. She doesn’t need a job to be an anchor of our community. Our medically complex children are loved by their families, friends, and communities because they are whole people with so much to offer. And to live their valuable and full lives, our children need Medicaid.