When your child has autism, parents want as much help as possible with obtaining and affording care and services. Your state’s Medicaid waiver is one way to receive that help. But what is the Medicaid waiver, what does it cover and why should you apply for it for your child with autism?
What is a Medicaid waiver?
According to the Arc of Indiana website, Medicaid waivers “allow Medicaid to fund supports and services for children and adults with disabilities in their family homes or community residential programs instead of institutions. Medicaid Waivers allow an individual to use traditional Medicaid services and the additional services available through the Medicaid Waiver program.” Many times, they are referred to as home or community-based services.
Each state has their own program and eligibility requirements. The upside is that the majority of programs are not based on the parents or legal guardian’s income, so more children may qualify than traditional Medicaid. The downside is that the wait time for the waiver in some states can be years. That means that you want to apply for the Medicaid waiver as soon as your child is diagnosed with autism.
What types of services and care does a waiver cover?
According to Medicaid’s website, “States can offer a variety of unlimited services under an home and community-based (HCBS) Waiver program. Programs can provide a combination of standard medical services and non-medical services. Standard services include but are not limited to: case management (i.e. supports and service coordination), homemaker, home health aide, personal care, adult day health services, habilitation (both day and residential), and respite care. States can also propose ‘other’ types of services that may assist in diverting and/or transitioning individuals from institutional settings into their homes and community.”
Why should I apply for a waiver for my child?
Even though the wait times for a Medicaid waiver can be long (depending on the availability and backlog in your state), I found that applying for the waiver really benefited my son J. In fact, I waited a few years before I applied. I regretted the wait once he started receiving services because he could have been receiving more treatments earlier. My state’s wait was incredibly long at the time; however, it went quickly once I did apply because additional funding had been provided to our state Medicaid program to reduce the backlog.
So why should you apply for the waiver for your child? Here are seven reasons.
1. Access additional services and care not covered by your private health insurance
Private insurance has some specific services that it will cover and has others it won’t. Generally, you do not have coverage for treatments such as music therapy, participant assistance and care (PAC), recreational therapy and others that your state’s waiver may cover. This gives you more options for your child. My son J took music therapy for several years under the waiver. It really helped him with his anxiety and better cope with school. In fact, he loved it so much that he now wants to pursue music therapy as a career once he graduates from high school!
2. Cover summer camp costs if camp is available through PAC providers
We were fortunate to have my son’s camp costs primarily covered through his autism waiver because our local autism group used PAC providers to run it. If you have a local group that runs an autism camp through PAC providers, you should look into whether the waiver will cover the cost of camp.
3. Establish a relationship with a case manager to help navigate services
One of things I have found to be most beneficial is having a dedicated case manager for my son. She has helped us not only navigate the services through his waiver, but she provided additional information and resources when I needed them. His case manager was also great during the pandemic and checking in on him every couple of weeks to ensure he had everything he needed.
4. Assist with the costs of care and services for autism
The financial struggle because of autism is real for parents. A study published in Pediatrics in 2014 estimated families spend $17,000 more on autism medical and other expenses than families that do not have a child with autism. Research also found that lifetime costs of caring for a child with autism is about $1.4 million. Insurance and government assistance cover part of it, but families are burdened with high out-of-pocket costs when they also have lower income levels. The Medicaid waiver can help you with the cost and care of services for autism.
5. Save money on health insurance deductible and coinsurance/co-pays with services you can obtain through the waiver instead of insurance
Some care and services offered through the waiver are ones that technically are available through private insurance. However, if you have dollars available through the waiver, then you can obtain your child’s services through it and save the money that you would have paid in copays or coinsurance through your health insurance.
6. Access much needed respite care to provide a break for you as parents
One of the wonderful services covered through the waiver is respite care. It’s difficult to find childcare for an autistic child, and respite care can really help. You can use it as after-school care (only for your autistic child though – not any other children) or periodically when you need a break from caring for your child.
7. Help your child learn independent living skills
Through PAC services, you can have a provider take your child into the community and learn independent living skills. This may be going to a local fast food restaurant and ordering and paying for themselves. They may also take them to places in the community and have them take other steps that will help with independent living. For instance, they may take the bus somewhere and learn to use the bus schedule. These services have a lot of opportunities to help your child.
Does your child with autism have your local state Medicaid waiver? If so, what have you found to be the biggest benefit for your child? Leave a comment and share with others to help support one another on this journey!
