In honor of Autism Acceptance Month, Femme Frugality will be hosting a series of Monday articles that focus on the financial challenges and triumphs that people with autism face and achieve. When they are children, these things also tend to affect their family’s finances, as well.
When you’re raising a child with autism, the largest expense you shoulder is healthcare. You learn that “healthcare” isn’t just doctor’s visits and the occasional dramatic visit to the ER. It’s therapy. Adaptive equipment. Communication devices. And more.
None of it’s cheap, and if you don’t have a good healthcare plan, a lot of it’s not going to be covered.
Even if you do have a good healthcare plan, some benefits will still not be covered. In many states, the most comprehensive way to get your child the services and equipment they need is through Medicaid, and many states allow disabled children access to Medicaid even if their parents’ income exceeds eligibility limits.
Medicaid Coverage Saves Everyone Money
Medicaid coverage keeps kids out of institutions. Until the 1980’s, one of the only ways to get children with complex needs the services they required was through an institution. Whether a parent wanted to part with their child or not, they were often forced to.
This was also extremely expensive. Providing a child Medicaid benefits so they are able to live and thrive at home is far less costly than having them live in an intermediate care facility or nursing home.
Luckily, things have changed, but not all states are equal. Today we’ll be looking at Medicaid coverage options for children with autism across all fifty states–and Washington, D.C.
Before we get started, there’s some vocab I want to review.
“State Plan” simply refers to the Medicaid coverage that anyone gets if they apply for benefits with their state. Eligibility is dependent on income limits–not disability or lack thereof.
ABA therapy, or Applied Behavioral Analysis therapy, is the most proven method for successful early intervention for children with autism. There’s just one problem: it’s insanely expensive.
Until recently, most insurers denied the evidence in favor of this therapy. Some still do because of its cost. But most states have enacted laws recognizing, and forcing insurers to recognize, it as an evidence-based therapy.
That doesn’t mean all states provide coverage. There was a mandate issued by the Federal government in 2014 that arguably required its coverage under Medicaid, but some states have interpreted this mandate differently.
I want to take a minute here to acknowledge that not everyone is behind ABA–even within the autism community. There are some autistic adults who are opposed to ABA therapy when it’s practiced with extreme rigor. However, there is also a general acknowledgement that there are ethical and non-ethical ways to practice ABA from the autistic perspective. You can get both sides of the argument here.
Level of Care
Required “level of care” indicates where a child would have been cared for prior to our culture’s shift towards keeping autistic children with their families. There are three levels commonly recognized in most states. In order from least “severe” to most “severe,” where “severity” means more healthcare is needed:
- Intermediate Care Facility– Many parents may be surprised to learn that their child would have been institutionalized not so long ago. This level of care can, in some cases, be equivalent to the child who goes to outpatient therapy several times a week and has behavioral therapists in their home or community setting.
- Nursing Home– This level of care would require skilled nursing/medical care on a regular basis. Today, you may have a nurse come into your child’s home and/or school to help provide these services.
- Hospital– This level of care is required when you need more than a nurse. There may be monitoring of a condition or simply more advanced care needed on a regular basis.
In this guide, the lowest level of care required is listed. For example, if a state lists the required level of care as an intermediate facility, that will typically mean that those at a nursing home or hospital level of care are eligible, too.
Conversely, if the listed level of care is “nursing home,” those who are at an intermediate care facility level of care would not qualify for the listed program.
A Medicaid waiver is simply a program that grants specific services to those who do not typically qualify for the State Plan. There are also waivers that provide services in addition to and including what’s available on the State Plan.
You may notice that for most states, there is no reference to the wait list. This is done for two reasons.
- Medicaid programs are in flux at the moment. A wait list–or even a waiver–could change suddenly. It’s information we don’t have the capacity to update continuously.
- We want you to get in touch with the agencies that provide these waivers. Even if the wait list is too long for your child, state agencies may know of other programs or community organizations that could help in your unique situation.
Download Your Free Copy of Children, Medicaid & Autism: State-by-State Guide
In an attempt to make this guide thorough for all 50 states plus D.C., it is much longer than typical Femme Frugality content–11,000+ words. As such, we’ve turned it into a PDF for your browsing convenience. You’ll be able to find your state in our table of contents and easily jump to the appropriate page to get the information you need.
This information in the above PDF is accurate to the best of our research as of April 24, 2017. It will be reviewed and updated annually. Intensive research was performed for each state program. The majority of states had a governmental agency or independent advocacy group provide information regarding their programs.