Medicaid waivers? Huh?!?
When I started to work with Goally I had no idea what a medicaid waiver was. My only experiences with waivers were the kind that make sure you can’t sue laser-tag birthday venues or zipline companies for breaking an arm. But hearing the concerns of Goally parents made one thing abundantly clear: no one, outside of healthcare professionals, really understands the intricacies of what waivers are, how they work, and how to apply to them.
Taking a first glance at the Medicaid waiver process was daunting. Complicated and outdated government websites that never had enough information, third party websites I wasn’t sure I could trust, and no guidance on where to start. The fact that state governments expect parents, who are already caring for children with special needs, to have the time to navigate this difficult system is frankly ridiculous.
We’re here to make things just a little bit easier
We took it upon ourselves to research these medicaid waivers state by state so that we can give parents places to start, numbers to call, and organizations that are ready to help. You can check out the links at the bottom of this page to see these state guides on our forum and talk with other parents who are going through the same process themselves.
So…. What is a medicaid waiver then?
Medicaid waivers waive, or disregard, certain requirements that medicaid has. The most frequent item that gets waived is income. Usually, in order to qualify for medicaid the caregiver must have income lower than 133% of the federal poverty level ($28,888 for a family of 3). What almost every medicaid waiver does is make it so that this income requirement only applies to the child if they have a disability. This means that unless your child’s lemonade stand is wildly successful, they will almost always qualify for these programs.
The other major requirement is medicaid waivers change is called comparability. Medicaid recipients are normally allowed to only receive the services that other medicaid recipients get. This standard doesn’t make sense for children with intellectual and developmental disabilities like autism because they have such varied and unique needs. Medicaid waivers make it so that specialized treatments are covered as part of your child’s plan.
The last aspect altered from traditional Medicaid coverage is the location of the service being provided. Prior to the creation of Medicaid waivers most children with disabilities were institutionalized as families lacked the proper resources to care for their child. Medicaid waivers allow care that typically could only be provided at a medical institution to be transferred over to the home. This both keeps costs down, as institutionalization is significantly more expensive, but much more importantly allows families to stick together.
In essence, Medicaid waivers make it so that families, regardless of income, are able to receive goods and services such as assistive technologies like Goally, occupational therapy, respite, and much more. These waivers enable children to be able to stay with their families and in the community instead of needing to stay at an institution that provides them with the same services.
That sounds amazing! How do I get a medicaid waiver?
Every state has unique medicaid waivers, application processes, eligibility requirements, and available services. To get all of this specific information please check your state on our forum.
Here are some general tips that we have found after perusing so many medicaid waiver systems.
- Try not to rely on government websites too much. It usually feels like you’re trying to glue a piece of shredded paper back together with how terrible they are. Instead hop on the phone. Department phone numbers or regional office contacts that we provide are far more informative and you will typically have to end up calling them anyways to apply.
- Most waivers say that your child must require an intermediate care facility (ICF) level of care to qualify. Don’t get frightened by this, they are not trying to put your child in an institution. ICF level of care is a technical definition that typically just means that your child has limitations with 3 of the 6 following challenges: self-care, understanding and use of language, learning, mobility, self-direction, and capacity for independent living.
- Many, many states have 1-10 year waitlists before you can get services. It’s unacceptable that these are so long, there is simply not enough funding available for everyone currently. You still get so many important services from them so we suggest you go through the eligibility process early so you can get on these lists. While you wait make sure to explore other state and county resources, many states have stipends available for families with disabilities.
- If you really don’t know where to start, calling your state’s Department of Human and Health Services is a good bet. If they can’t help you directly they should at the very least direct you in the right direction.
What happens when you get on the waiver?
Once you get on the waiver or county fund program you will typically start working with a case manager and developing an individual service plan (ISP). This ISP can include tons of different services tailored to your child and additional funds for items such as assistive technology like Goally. You can view our guide on how to get devices approved with your case manager HERE.
Find your state’s medicaid guide below