Five years ago, I never knew I was in for the fight of a lifetime. Not my lifetime, but Caitlyn's. The fight for quality and fairness, and all because of something she was born with! I volunteer on the state level to help advocate for the rights of people with disabilities. I was asked to write our story on services and what they mean to us. So, I am sharing it here.
As the parents of two children, my husband and I just want what every other parent wants. We have always wanted to be able to provide for our children everything they will need, and make sure that they grow up to be independent adults who can live the “American dream” and be anything they want to be. When we married, we never expected that the birth of our first child would change everything.
At two and a half years of age, our daughter Caitlyn was diagnosed with Rett Syndrome. Today, at seven and a half yrs old, Caitlyn relies on us for 100% of her care. She is unable to talk, dress herself, use the toilet, bath herself and feed herself. She receives about 80% of her nutrition through a feeding tube because of the amount of energy it takes to eat. She was burning more calories than she was taking in. She has trouble coordinating her body, and often times will walk into things or easily trip.
We still want to provide everything that Caitlyn, and now her 11 month old brother, Gunner, need. We want to be a two income family and live comfortably. Instead, my husband works and I have had to put my dreams on hold. In order for my daughter to receive Medicaid Personal Care, our family must sit at the poverty level. Really, it’s so much more than that. In order for my daughter to have me as “just a mom” for 77 hours a month, instead of me being her hands, voice, nurse and over all care provider, we must sit at the poverty level. For 77 hours a month, my daughter gets her mom back. For those hours she gets a mom who isn’t burnt out, who isn’t in pain from the lifting and who has the energy to play games and read books.
Caitlyn’s care provider has become part of our family. In fact, having her has allowed us to remain a family. Since she comes into our home, we get to goof around and play with our kids. My husband can come home from work and be “dad”, instead of immediately walking into the “caregiver/nurse” roll because my back has had it for the day. With MPC hours, we don’t have to worry about not having Caitlyn with us because we can’t care for her anymore.
Having MPC hours is bitter-sweet. I want to go back to school, get a degree and have a good job. The thing is the care that Caitlyn requires is so significant that I would be working just to cover all of her expenses and care. So for now, we feel trapped in poverty because we can’t physically afford to lose the minimal help we receive. For now, we worry. We worry about what happens when she becomes an adult. It seems every time we turn around, Medicaid Personal Care hours for adults are being reduced. We worry about how we will be able to keep Caitlyn in our community. I am a little on the short side, and 5 feet 2 inches. At 7 yrs old, Caitlyn is already almost as tall as me. It gets harder and harder already for me to care for her.
We need Medicaid Personal Care fully restored, and protected from further cuts. Parent’s in our state need to know that their “Caitlyn” can remain in the community that they have grown up in. We need that worry, stress and “what-if’s” of the future to be taken away. We need to know that when the day comes that we can no longer physically do the other 643 hours a month; the options will still be there so that our daughter can remain in her community.
Thank you for your time.