I’m a passionate advocate for Hudsyn….many of you know that from seeing my posts on our various social media accounts. I’m a member of the State Developmental Disabilities Council. I volunteer on the Family Advisory Board for Children’s Mercy Hospital. I’m an active member of the Children’s Mercy Beacon Clinic Patient & Family Advisory Council. Formerly, I participated as a family member on the Kansas Department of Health & Education’s Special Needs Healthcare Services Family Advisory Council. If it’s a cause that allows families to be better supported when they have a child with special needs, I’m usually very open to helping the cause.
Because of my experience in these different organizations, and because of what I do for a living, I’ve become very familiar with the different state Medicaid programs. That being said, this post is not a “be-all-end-all” for how each state’s program works. However, it will answer some of the most common questions I receive when it comes to how we support Hudsyn in our home.
What is a Medicaid Waiver? Traditional Medicaid (NOT referring to a waiver) is usually in place when a family’s gross income is under a certain amount. This is based on the number of people who live in the household as well. If a family qualifies, traditional Medicaid (which is a federally funded program) becomes their primary health insurance. Granted, those families must go to providers that accept Medicaid, but it’s widely used for our many impoverished Americans….72.5 million to be exact. But, this isn’t the program I’m referring to in this post.
A Medicaid waiver, WAIVES the income test for a minor child who has a qualifying diagnosis or disability. Waivers give states the ability to use Medicaid with home and community-based services (HCBS) in order to help them thrive and continue to live in the community. Before the creation of waiver programs, people had to live in hospitals, nursing homes, or other institutions like State Supported Living Centers or Residential Treatment Centers so Medicaid would pay for long-term services. Or, if you’re parents like us and have a child with medical complexity, one or both parents had to quit working just to care for that child’s medical needs. As a result, parents lobbied to get more support from the Medicaid program and we now have waivers to help us do that.
How Are State Waivers Administered? Each state has different waivers. For example, Kansas (where we live) has seven waivers. Pennsylvania has nine. Florida has three. Arizona has one.
Some of the services we receive from Hudsyn’s Medicaid Waiver (currently called the Kansas Technology Assistance (TA) Waiver) are:
- In-home nursing care (many of you know & love Alicia who has been Hudsyn’s nurse for over 7 years)
- Home modifications (to an extent)
- Car modifications (to an extent)
- Respite Care
- Therapy costs above & beyond what primary health insurance cover
Without the above support, Dan and I would’ve likely lost our minds the first five years of Hudsyn’s life. Granted, Dan still continued to stay home, but without nursing, it’s unlikely I would’ve been able to work as much as I do. Having this “third parent” or caregiver for her has been life-saving. Hudsyn wasn’t able to attend full-time school until 2019 – mainly due to all of her medical appointments, therapies and general well-being/energy level. In addition, her extra therapies and out of pocket medical expenses would’ve cost a small fortune. Her waiver pays all co-pays, deductibles and non-covered services (like diapers, Keto formula, physical therapy, etc) that our primary health insurance doesn’t cover. I’d estimate the waiver has saved our family hundreds of thousands of dollars over the last decade, especially with the in-home nursing.
That being said, I know many families who either can’t quite qualify for one of the waivers or are put on a wait list. In Kansas, our I/DD Waiver (Individuals with Developmental Disabilities) has a wait list of 10 years. Some of the wait list issue is due to lack of proper funding at the state level. But it’s mostly because there aren’t enough service providers to GIVE the services this large population needs. I can’t tell you how many times we’ve had to search high and low for nursing coverage when Alicia can’t be here. I know families who struggle with consistency of supported care even when they’re on a waiver because of this reason. But it’s something and when we have coverage, it allows our family to stay healthy, employed and active in the community. The above video (from Texas state waiver programs) gives excellent advice to families about getting on the wait lists as soon as possible….you can always decline services if things change later. Getting on the wait list at least gives you options in the future that you may not have now.
Can I Compare State Waivers Before We Move? Some states are better than others when providing Medicaid waiver services. Pennsylvania has no wait lists and, in my opinion, offers the best services of Medicaid waivers than anywhere else in the country. It helps that the state of Pennsylvania (and many neighboring east coast states) have some of the highest income tax revenues per capita in the country (aka – more wealthy families live and pay taxes there to fund these programs).
If your family is wanting to compare states (maybe you have a move coming up or you’re in the military and are curious about where you’ll be stationed next), I highly recommend hiring a benefits expert like National Care Advisors to work with you to develop a state-by-state comparison.
It’s important to explore all benefits that your child/adult with special needs may be eligible for. This cannot only save your family money, it can help support YOU in being a long-term caregiver. Please also remember that if/when you are asked by lawmakers to share your opinion on these programs and how they affect your family, SPEAK UP. I get it – a meeting at the capitol building in your state can seem very unimportant when someone is relying on you for care every day, or you are trying to get the care you need. And yes, it can seem like this process is really insular…it is! I often wonder if they design it this way on purpose…to make it hard for you to participate and know who to talk to or exactly how to advocate. By ignoring and sitting idly at home, though, you give them 100% decision-making power to do whatever they feel is necessary with important programs like these.
What Can I Do To Improve Medicaid Waivers in My State? I don’t know if anything will change in regards to wait lists being elminated or future funding continuing to happen for Medicaid waivers…but, I can assure you, nothing will change unless we work together to tell our state representatives and senators what’s happening at the ground level. So please, be an advocate for your child when it comes to local and state levels. Write, call or ask for an in-person meeting with your local representatives and senators. It matters.
Really informative post, will pass this in to my daughter who has a 3 year boy old newly diagnosed as being on the spectrum. Thank you!
Thanks, Shelly! So glad it was helpful. I know at the beginning of Hudsyn’s diagnosis, we were lost on how to find what and who to talk to regarding benefits. It’s so gratifying that I can now give back and help others who need the information!
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