For most parents with a newly-diagnosed child on the autism spectrum, one of the most common questions asked of them—and the most common responses provided to this question—goes as follows:
“Did you get your child on the Medicaid Waiver?”
“Uh…what’s that? I have no idea what you’re talking about.”
THE MEDICAID WAIVER RIDDLE
You see, most of us who entered into the autism world through the school or medical system gateways may not have been given all the fine details about where to go for help in supporting our children with autism as they grow up.
Now, in their defense, both of these systems have a lot of people to serve in the one area they do best. We can’t expect them to be solve ALL of one child’s issues. Some families who go through a clinic that specializes in autism may have been notified of this support, but many remain clueless. I most certainly was.
Enter in another autism mom.
It was she who made me aware of the type of help that comes with the waiver. I remember looking at her incredulously. She rattled off the kinds of therapy assistance and parent support under the waiver…
RESPITE + MUSIC THERAPY + RECREATIONAL THERAPY + SPEECH/LANGUAGE THERAPY + OCCUPATIONAL THERAPY + BEHAVIORAL THERAPY + MORE =
Say what?! What is this mysterious thing called the Medicaid waiver? I must crack this code!
Many parents with newly-diagnosed kiddos often have a knee-jerk reaction in trying to get help for their kids. That includes spending themselves into debt in search of a magical solution to autism. ABA is often suggested as the first go-to therapy, since addressing the “problematic behavior” of their child in the home, school and public places is foremost on their minds. Many people, especially autistic individuals themselves, have a problem with ABA and need alternative solutions to therapy. This is where the waiver comes in.
With an autism diagnosis, your child can qualify for the Medicaid waiver. This means your child (and you as a parent) benefit from the aforementioned government-paid-for resources—FREE TO YOU!
DIVING INTO THE “WAIVER WORLD”
During most of the 20th century, many people with autism were institutionalized—hidden away from the rest of society. Researchers in the 1980s found a disproportionate use of Medicaid funding, instances of abuse, and a general lack of quality of life for most. Many did not actually need to be institutionalized. With the right kinds of support, they could integrate well into the community. They could live at home or in group homes with adequate supervision, earn self-worth and respect that comes from employment, and feel love and support by their friends and family. The Home and Community-Based Services (HCBS) Waiver program was born.
The goal of the HCBS is to help those with developmental disabilities learn to become as independent as possible as an adult and have a meaningful life in the community. The “waiver” means to “waive” the need for institutionalization. It also generally means that the parent’s income is “waived” in order for their autistic child under 18 to qualify for Medicaid.
Both of my kids have autism. Therefore, both of them have the Medicaid waiver. Our income would be considered too high to qualify for typical government welfare assistance. But the Medicaid waiver allows my kids to not only have the therapies and services listed under the HCBS waiver program but to also have the Medicaid insurance for standard medical needs.
For those without good family insurance through a job, this is a lifesaver. For us, we have decent insurance through my husband’s employer, so Medicaid is used as a secondary insurance to help with expenses not totally paid by our own. Certain therapies like speech and language are generally run through Medicaid and not the waiver itself.
HOW DO I APPLY FOR MY CHILD?
Actually, the real question should be “WHEN do I apply for my child”. The answer is: “RIGHT NOW!” Like, as soon as you get that diagnosis! These services help every age, from small child to adult.
SIDE NOTE: I live in Indiana. So, I will be discussing the process of applying in Indiana. It is one of only a handful of states that has a waiver program specifically for autism. Other states include autism within a broader developmental disability category. EACH STATE USES ITS MEDICAID FUNDS DIFFERENTLY. This means the application process, waiting period, and the benefits received will be a little different.
Check out Medicaidwaiver.org for state-by-state information on the Medicaid waiver program and how to apply.
Sad to say, you don’t just apply for the waiver and then automatically get help—this is government we’re talking about here.
Depending on your state, the wait to first be approved and then the wait to actually receive services can be a total of several months to a few years. (In Florida or Texas, it could take up to 10 years or more!) The time I first applied for my son until the moment he received funds was 7 years. For my daughter it was 2 years. Now, it may take families less than a year. (It seems like enough parents in Indiana got fed up and fought to have those funds available sooner. GO PARENTS!)
In Indiana, the “WHO” you must contact is your local area office of the Bureau of Developmental Disabilities Services (BDDS). Here are 10 major steps in the waiver process for families with a child with autism under age 22:
- BDDS is your POINT-OF-ENTRY to the Medicaid waiver process. They will send you an application. Confirmation from your physician (MD or DO) that your child has autism is required.
- Once you have submitted your application, you will be contacted to set up an interview. Bring your diagnosis paperwork from your child’s doctor, school, therapist, etc. to help determine the Developmental Disability (DD) of your child. Most likely your child will qualify for the Family Supports Waiver (FSW), but in special cases the child may need more support under the Community Integration and Habilitation (CIH) waiver. An intake specialist will complete a preliminary assessment for Level of Care (LOC) to figure out what kinds of support services your child may need, based on if the disability…
- Is similar to Intellectual disability
- Originates before age 22
- Will continue indefinitely
- Causes functional limitations in 3 major areas of life (speech, executive functioning, etc.)
- Your child will then be placed on a waiting list. After a period of time, you will then be “targeted” by BDDS with a letter in the mail. DON’T LOSE IT! This means your child has been approved for services. At this moment in time, your child does NOT have funds to start services…yet.
- You will confirm with a reply letter that you still want waiver services. A BDDS intake coordinator will follow-up with a current LOC.
- Take your “target letter” from BDDS to your local Medicaid office to apply for Medicaid. This is the FUN part! (Haha, just kidding). They will require you to submit all kinds of lovely proof of income. If you make too much, YOU will be denied. But that letter will allow your CHILD to have Medicaid insurance.
- Once you apply for Medicaid for your child, now you have to go to Social Security Administration to apply for SSI with the BDDS target letter. If you make too much, your child will be denied income benefits. (For us, we knew we would be denied; this was a required formality as part of the process.).
- At this point…DON’T GIVE UP! YOU’RE ALMOST THERE! Applying for government help is mind-boggling insanity, but it’s so worth it in the end!
- Sooner or later, BDDS will send you a “pick-list” for someone to manage the funds allotted to your child ($17,300 a year as of 10/17). This means you can start to access services…YEAH! This case management service is a vital part of the Medicaid Waiver program. In Indiana there are several from which to choose. This “open market” has improved services for waiver individuals as they must compete for your funds. Ask about their experiences with the waiver and how they train their case managers. You can always change case management companies if one doesn’t work out.
- From now on, your waiver case manager will be your regular POINT-OF-CONTACT. This person will conduct a thorough assessment of your child’s needs, strengths and interests. They can recommend what types of therapies but may not openly recommend a certain agency. They provide lengthy lists of agencies for each type of service, so you’ll have to take some time to assess the best person and agency with whom to work.
- You choose—and then intimately work with on a weekly-monthly basis—the direct care service agencies that provide respite, therapy and other services. I have loved working with these therapists, and my kids have developed trusting, productive relationships with them.
With the Medicaid waiver, you are now part of a TEAM that supports your child. Your waiver case manager and agency coordinators will meet at your home (or wherever convenient for you) on a quarterly basis to make sure goals are being met for your child.
ALWAYS KEEP IN MIND: You have the right, at any time, to alter the course of waiver services if things don’t work out, such as dropping or adding certain therapies, agencies, and workers. Also, you’ll be limited by a yearly budget, so your child can’t “do it all”.
In our kids’ early years, we needed more respite. Later on, we dropped respite hours and added therapies best for our kids when they became more available in our area (like recreational and music therapies).
SOLVING THE MYSTERY: CASE CLOSED
Hopefully, I have provided answers to your questions about the Medicaid waiver and how it can help your child with autism. I do recommend that you create an organizational system of some kind to keep track of the paperwork and offices involved. Congratulations…you are now officially a “case manager parent”! Join the club!
Our lives have been positively impacted by the people we have met through the waiver, and we are tremendously grateful for the support this waiver provides. My kids loved hanging out with their respite helpers. They have thrived under the direction of their music therapist, learning new instruments and even composing music! And my daughter has loved spending time outdoors with her recreational therapist.
Despite the frustrations that come with dealing with government bureaucracy and waiting for years in anticipation, I encourage you to push through for your child. Your time and efforts will be a worthwhile investment in his or her future. Our lives have been—and will continue to be—blessed by it.
UPDATE: I wanted to add a few more details about the benefits of the waiver that few know about:
- You can apply for the America the Beautiful Access Pass, which allows a person with autism and 3 of their guests to get into the national parks and other federal sites for free for a lifetime. It also includes deep discounts on camping and other recreational activities (i.e. 50% discount on camping sites in the Smokey Mountain National Park).
- You can apply for special discount programs that comes with having Medicaid, such as the Access Pass Program that allows those with the waiver and their families in Indiana to get in to certain museums at a minimal price (i.e. the Indianapolis Children’s Museum costs $2 per person).
- There are other benefits with having Medicaid such as a discount on Amazon prime membership.
Check to see if your state has these types of programs associated with the waiver. Other benefits may be strictly based on financial need and those who qualify for SNAP/TANF/SSI. Many autistic adults can access these benefits once they turn 18 and qualify for SSI.