medicaid waiver 101
Suzanne Shaft

If you or your child has a developmental disability, you may be eligible for something called a Medicaid Waiver.  But what exactly are waivers?  What do they cover?  I’ll talk you through the basics of a very complicated system so you will know what steps you need to take to see if a waiver could help you.

What is a Medicaid Waiver and Who Gets It?

Waivers are provided by Medicaid.  Medicaid helps people who are in certain risk groups get healthcare coverage.  These risk groups can include low-income adults, children, pregnant women, the elderly, and medically fragile people.  Usually, you must meet certain requirements to be eligible for Medicaid, like meeting certain income criteria, being 65 or older, having a disability, and being eligible for SSI (Supplemental Security Income) payments.

A waiver allows the federal government to waive certain rules and requirements that usually apply to the Medicaid program.  This means that because of waivers, states can provide services to people who, for instance, want to stay in their home rather than be put in an institution.  This is a 1915(c) waiver or a waiver specifically for Home and Community-Based Services (HCBS), and that is the most common one used for individuals with disabilities.  Prior to 1991, Medicaid would only pay for services if a person lived in an institution.  Think institutions are a thing of the past?   — They aren’t.  They still exist.  But they are not appropriate for everyone in these populations.

Does It Matter Where You Live?

Yes.  Each state can apply for waivers.  That doesn’t mean they have to, but most do.  Some states even have waivers that are for people with specific disabilities.  For example, Colorado, Indiana, Maryland, and Wisconsin have waivers specifically for those with Autism.  Waivers are not transferrable from one state to another.  Therefore, if you move from Indiana to Ohio, for instance, any waivers you had in Indiana are not going to be recognized in your new home state of Ohio.  You will have to apply for a new waiver in your new state.

So, if you or your child has a waiver and you are thinking about moving to another state, it’s best to check out your new state’s eligibility requirements and waiver availability before you move.  You may have to live without certain services that you had while you apply for a waiver in your new state.  Some states have waiting lists for waivers that are 3-10 years long.  States can have different ways to finance and deliver Medicaid waiver services.  The system is not unified.  Some states can also apply for waivers that provide services through a managed care system.  This will limit your choice of service providers.

Finally, some states limit the number of people who can get HCBS waivers.  It is still unclear if this is a violation of the Americans with Disabilities Act (ADA).  In the Olmstead Decision, the Supreme Court decided that states were violating Section II of the ADA if they are delivering services in an institutional setting rather than a home-based setting if they could be appropriately provided in a home-based setting.  But the Court also acknowledged the fact that states can only do so much.  They simply may not have the resources needed to provide services to everyone who needs them.  This left a lot of open questions for the lower courts which are still being litigated.


What is Covered under a Medicaid Waiver?

The services covered by a waiver can vary from state to state.  Covered services may include: homemaker and personal care services, transportation, respite care, supported employment services (e.g., a job coach), accessibility modifications to your home, case management services, interpreters, adult day support, and adaptive and assistive equipment.  It’s best to check your state’s rules on what is and is not covered.  Some things that are NOT covered under waivers include the cost of food, clothing, and shelter.  These basic needs are supposed to be provided by SSI (Supplemental Security Income), which is a whole different government department.

What is the Bottom Line?

As I mentioned, this is a very complex process.  Unfortunately, many families who qualify for waiver services aren’t even aware they exist.  They may only find out about them because a crisis has occurred.  Families are often spent emotionally, financially, and physically because they don’t know they have to ask for these services.  You can’t rely on states to tell you about waiver services.  Now you know what they are and how they can help.

If you still have questions, it would be my pleasure to help you sort this out.  Come chat with me!

Disability and financial planning experts on Vitalxchange:

Suzanne Shaft – Parent Mentor and disability advocate

Jennifer Hulme – Benefits and Transition Planning and life coaching

Georgia Visioneer – Autism parent and benefits strategist and disability financial planner

On Point full-service disability financial planning

Relevant Reads on the Medicaid Waiver and Eligibility:


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