One of the biggest fears I had was “What happens to my daughter if her dad and I both are unable to care for her?” This could be us being injured—or worse—and not being able to provide the round-the-clock care that she needed.
She had a wonderful team of nurses, but they did not work 24/7. Our family and close friends could sit with Casey while I grabbed a shower or did the dishes, but I was always right there in case Casey needed me. Who would take care of her if I couldn’t? I lost a lot of sleep over this fear.
Casey’s needs were very complex and we had many trained nurses that could not handle her care. This made it very hard to train family and friends to help out. There were many times my husband or I would take turns staying home while the other went wherever because the risk of something happening was too terrifying.
Around Casey’s 3rd birthday, we enrolled her in what was then called Rider 28 (now it is called Money Follows the Person - MFP). It was a way for children with complex needs to get Medically Dependent Children’s Program (MDCP) without having to wait years.
Instead, we had to go and stay in a state-approved nursing home for a limited amount of time. There are only a handful of approved locations and the one closest to us was about an hour away.
So we packed and checked into the nursing home. It was older, nothing fancy. The staff was extremely nice and helpful. They really did make the place as comfortable as possible. Bottom line, however: There was nothing that could be done to make it extremely nice.
I wanted to do everything in my power to make sure that Casey never ended up in a place like the nursing home. When we left, she had Texas Medicaid as her secondary insurance and MDCP was helping with respite, equipment, and a few other financial struggles. We wanted to be sure that if anything ever happened to us that there would be enough money and people trained to provide the same level of care for Casey as we provided.
We set up what is called a Special Needs Trust. This protected Casey financially.
We then had to name family and friends that could take care of her, if needed. This was very hard for us, but once we selected the people, we had to work hard to get them trained—just in case.
I did rest a little easier once we had all of these things in place. But the fear never totally went away. No matter how much money we saved for her or how many people we trained, nothing ever seemed like enough. Add this to all of the other fears that come with being a parent to a child with complex medical needs ... and the stress and anxiety just pile up.
Parenting any child is not easy. If you have a child with complex needs and you are losing sleep like I was, I strongly recommend looking into setting up a trust and finding at least one friend or family member that you can fully train on your child’s needs.
It may take a long time to get there, but it’s worth it.
This website has more information for you. Visit Planning for a Time When You Can’t Care for Your Child.
After my daughter passed away, I also lost my own identity and purpose in life. How do you go forward from there?
To advocate for our children, we must be informed and active in the decision-making processes—from local to state to national concerns. There are tools to assist in finding helpful resources.