Medicaid Home and Community Based Services (HCBS) have been in the news a lot over the last couple of months. As part of our monthly disability history series, we will take a look back at how Medicaid HCBS Waivers got their start in this country.
First, to understand what an HCBS Wavier is and what it does for people with disabilities. Waiver programs provide support services in the community to people who otherwise might be forced to receive those daily services living in an institution, nursing home, or hospital. In Maryland, thousands of people with disabilities receive supports at home like assistance with showering or cooking that is funded by a Waiver. These community services look different for each person and are ideally individualized for what someone wants and how they choose to have support.
Just over 30 years ago if you needed supports like personal assistance services to live independently it was not covered by Medicaid, you could only receive those Medicaid-funded services if you lived in an institution. It was only through the adoption of Medicaid Waiver programs that gave the ability for states to provide services to people so they could live in their homes and in communities of their choice.
It was the situation of a young child named Katie Beckett and a determined family who helped to launch the idea that Medicaid should pay for services in the community, not just in institutional settings. As a toddler, Katie spent years in a hospital related to acquiring encephalitis. During the long hospital stay her parent’s private insurance had tapped out and she was shifted to Medicaid. This was fine as long as she was in the hospital but when Katie was ready to go home and receive care with her family the Medicaid was going to stop paying because she was no longer in an institution. This seemed wrong in many ways to Katie’s family who wanted to bring her home. They began sharing this story and it ultimately reached President Ronald Regan who agreed that it was cost-effective and all-around better to live with her family. President Regan ‘waived the Medicaid rule’ allowing legislative changes at the Federal level to give states the ability to cover other children in similar situations.
Medicaid Waivers have grown from there, and today there are over 300 HCBS Waiver programs nationwide. We still have a long way to go to shift the Medicaid Bias that keeps far more people in institutional settings rather than the community, but without these Waivers life in the community would not be possible for many people.