Movement with Medicaid

This week has been full of frustrating phone calls, but also a little bit of progress.

After many calls with Anthem and Moms in Motion, I finally got some action regarding Torvin’s attendant care hours. Torvin receives an allotted number of paid attendant hours through Virginia’s CCC Plus Waiver through Medicaid. These hours allow me to be paid as his caregiver at $13 an hour while I care for him and help meet his daily needs.

Torvin was approved for 42 hours, agreed upon by both third-party agencies that work with Medicaid. However, I was denied about half of those hours with no real explanation other than, “Some rule has changed for parents. You can appeal, but I’m sure you will get nowhere.” My case worker also shared that he had about 40 other angry parents who had lost hours too.

Instead of continuing down the same exhausting path of phone calls and appeals without answers, I decided to try another route. I emailed the Virginia Ombudsman to explain the situation. This is another third-party agency that helps advocate for people in situations like ours. I am willing to appeal, but if there are new laws or policies in place, I need to understand them so I can challenge the right thing — not waste precious time fighting blindly.

And I truly have very little time to waste.

Thankfully, I received both an email and a phone call back from the Ombudsman agency right away. The woman I spoke with was very empathetic and is working to schedule a meeting between us and Anthem to find out what is happening with this small but very important amount of pay that has been taken away.

This is also part of why our fundraiser for a hyperbaric chamber is so important to us.

When support hours and resources are reduced, delayed, or made harder to access, it directly affects our ability to keep up with the therapies and tools Torvin needs. Cerebral palsy care is not one thing — it is daily, ongoing, layered work. Hyperbaric oxygen therapy, ABR, horseback riding, pool time, music, movement, and all the small daily supports add up. We are doing everything we can to give Torvin the best possible opportunities, but the financial and logistical burden is very real.

On the Torvin front, we had our last music class of the season. He is really starting to apply what he has learned into rhythm and song, which has been beautiful to watch. He and Kelby also went to the pool yesterday. It was cold, but they had fun! I have been waiting for hotter days because the adult who goes with him has to be in the water the entire time, and I have a hard time with cold water.

We have also been doing about 4–6 hours of ABR each day. We are putting in the hours now because we know pool days leave a lot less time for ABR. Torvin is also back to regular horseback riding on Sundays, which is another therapy that is so good for his body and spirit.

Thank you to everyone who continues to support, share, pray for, and encourage us as we work toward getting Torvin a hyperbaric chamber and continuing the therapies he needs. Every donation, every share, and every kind word helps more than you know.

We are so grateful for this community and for everyone standing with Torvin.