Lions, Tigers and Medicaid Waivers: OH MY!

Authors: Barbara Knighton, Parent, Family Leader, Council Member of the Texas Council for Developmental Disabilities (TCDD), and Co-founder of Family Lynx, a family organization of the Texas School for the Blind and Visually Impaired (TSBVI)

Texas Medicaid Waivers are a necessity for getting your child the services they need to be successful and supported throughout their life. Getting on the lists immediately after birth is critical because the waitlists are long, and it can take up to twenty years to get to the top. It is important to sign up for all the waivers offered because you do not know which one will be the most beneficial to your child in the future. 

My son, Joshua, is 20 years old and in the 18+ EXIT program at the Texas School for the Blind and Visually Impaired (TSBVI). He has attended the school for five years. He has multiple impairments aside from his low vision. Joshua has been in the special education system since he was eight months old. He is currently on the waitlist for Home and Community Services (HCS) and has been since 2009. He is number 12,193 in our county and number 123,610 on the state master list. He was born in 2004. I am not sure why I waited so long to get him on this list, but he was very medically involved in the early years of his life, and most days we were operating in a survival mode. It is very difficult to have to live day-to-day and to plan for the future as well. Life happens! Give yourself grace and get on all the waitlists as soon as possible! The Medicaid Waiver Interests lists “waive off” the requirements for receiving Medicaid. The lists all have their own eligibility requirements, wait times and services. There is an excellent waiver comparison chart on the Navigate Life Texas website. It outlines the different waivers and what they offer.

We started our Medicaid waiver journey out of financial desperation due to overwhelming medical expenses and the loss of a second income. We enrolled in the Medically Dependent Children’s Program (MDCP) by completing the Rider 28 & “The Money Follows the Person” expedited enrollment process. We signed up for the Community Living Assistance and Support Services (CLASS) in 2005. Joshua came to the top of the CLASS interest list in 2012. Since he was medically stable but still needed support, we switched over to CLASS. This waiver has been very beneficial for us. It covers all his medical copays, pays for therapies and covers the cost of a caregiver. He recently came to the top of the Texas Home Living (TXHML) interest list. This waiver was not a good fit for Joshua because it has less funding available for recipients and fewer services available. When you come to the top of an interest list, you can always decline and ask to be put back on the waitlist. 

Joshua is now 20 years old, and we are neck deep in the transition to adulthood. He has two years left in public school and we are looking into what happens when the bus stops coming. We are in a holding pattern until we can get HCS funding. We are planning to have Joshua attend a day program and hope to find residential placement in an intentional community. Many of these programs and communities only accept HCS funds or private pay. I have yet to find the pot of gold at the end of the rainbow, so private pay is not an option for us. I recently discovered that some of the day programs and residential options do accept Intermediate Care Facilities (ICF) funds. You can contact your Local Intellectual and Developmental Disability Authority (LIDDA) to see if your child qualifies for these funds. The LIDDA also enrolls the child for HCS and TXHML waivers. We have gotten qualified for ICF funds but are still assessing our options.

Whatever waivers work best for your situation, it is critical to get on the waitlists as soon as possible. They are very beneficial for long-term support and have many additional benefits available to help the child and the family. Once enrolled, you can easily manage your benefits online at Your Texas Benefits. Whichever waiver you choose, take time to review your options, discuss needs with your medical providers, ask questions, and evaluate what you need now as well as what you may need in the future. You can also reach out to Facebook groups, other parents, current social workers and case workers, and search the internet. Best of luck to everyone with their waiver journey. It truly takes a village, and we are all in it together!

Joshua volunteering at a boutique