Julie Miles is mom to Syngapian Miller, diagnosed at age 5. Julie, husband Michael, and three children live in South Carolina. She is an active volunteer with Syngap Research Fund (SRF) and a physical therapist assistant.
Private medical insurance can be a blessing and a curse for many families that have a special needs child. Many, like our family, have found themselves going back and forth between one of the two: thankful for the freedom of being able to choose from a number of in-network physicians to fit our children’s needs, to the disappointment of being told they have a strict limit for all therapy services. We began the fight for amendments to our benefits plan and ways to work around the results, but in many cases the hard “No” led us to “What’s next?”
Our family did not meet the income requirements for traditional Medicaid, but we did fall into the category that would make us eligible for Medicaid TEFRA. Per the Healthy Connections Medicaid website, “In 1981, the federal government created the Katie Beckett waiver, named after the child who inspired it, which allowed children to receive institutional care at home while retaining their Medicaid coverage regardless of parents’ income. In 1982, the Tax Equity and Fiscal Responsibility Act (TEFRA) expanded the waiver.”
The purpose of this blog is to provide families with tips for speeding up the approval process to getting the care you need for your loved one. For starters:
In fact, gathering documentation could possibly be the most burdensome step of the entire process. Our children have typically been seen by numerous clinicians, and this can date back for many years. The state will want a thorough snapshot of our children.
Most state programs that we’ve applied for have wanted to know what a typical day looks like for our children. Prior to Covid, this may have been done in an in-person interview, but for now we must settle for letters and phone calls. Our TEFRA application asked a very simple, but deep question: “Please provide additional information that may help make a decision on your disability claim.” This was it, the moment where we had a blank page to justify the why. To fight and advocate for our son. I leaned into our SRF family and was given some excellent advice in regards to this letter.
The best advice that I was given was to describe why our son needed 1:1 care at all times. What could happen if he was left in an unprotected environment? We had to really stop and think about all of the number of challenges that our son faces on a day to day basis and the hard truth about how much care that he truly requires. It was one of the hardest things that I have ever had to put on paper because it brings up so many difficult emotions for the parent. Many states note this as a crisis waiver, and parents have stated that while a crisis can look different from situation to situation, at the end of the day you have to think about what crisis means for your child. What if they ran away from you in public? How many seizures is your child having a day? These are all extremely important things to note in order to make your case strong and compelling. Make it come straight from the heart and remember that no one knows your child like you do.
And organization is key! I made copies of every single document that was mailed to the state. Even the documents that I had in our Ciitizen file–I made a copy of the entire packet. I organized the documents by application, questionnaire, medical records, etc. I went through each page with a fine-toothed comb and even had a second person review the checklist and our documents. This is key to a quicker process because I did not want them having to ask for anything else from on our end. And if there’s a document you feel is pertinent but they do not ask for, send it anyway. This can only help your child’s case and further justify approval. Send your packet certified mail, with insurance and signature upon delivery (if not a P.O.Box).
And last but not least by any means, lean into your community of family, friends and supporters. Ask questions, use your resources and don’t be afraid to ask for help. The SRF family had wonderful suggestions when I reached out on Facebook asking for suggestions on how to craft my letter to the state. If you are a family on this path, I encourage you to review this post. And feel free to continue the discussion!