Medicaid Home-Based Care: 2016-2018
Medicaid is the U.S.’s only health insurance program for low-income people. All states offer some sort of home-based care that allows people who are disabled or elderly to have a caregiver come to their home to help with needed care tasks like getting out of bed, bathing, cooking, cleaning, and going to medical appointments. Staying at home is better for people’s dignity and, on the whole, is cheaper for the state than paying for a nursing home.
In 2016, Arkansas changed the way it decided how many hours of care people would get. Instead of using a nurse’s professional judgment—the standard for decades—the state switched to an algorithm. The results were devastating. People with conditions like cerebral palsy, quadriplegia, and multiple sclerosis faced cuts ranging from 20-50%, leaving them with so little care that they were forced to lie in their own waste, get bed sores from not being turned, miss medical appointments, and be totally shut in. Approximately 4,000 of the 8,000 people on the program faced cuts.
In response, we—myself, my team at Legal Aid of Arkansas, my clients, and the wider client community—fought back with an intensive campaign that incorporated various types of advocacy. We filed lawsuits in federal and state court and won. We educated the public about the absurd algorithm and the irrational outcomes. We activated the communities of disabled and elderly hurt by the algorithm. And, we provided information to journalists wanting to report on the story.
In the end, WE WON. The algorithm was thrown out by a court. And, the Arkansas legislature told the state to get rid of this algorithmic system to determine Medicaid home-based care.
Highlights of Different Types of Advocacy
Lawsuits/Litigation: We had a successful three-day trial in federal court that led to systemwide improvement in the information that recipients received so that they could better challenge their cuts. We also won in state court, with this oral argument at Arkansas Supreme Court resulting in a unanimous victory (here’s the link to the full argument).
Public Education: We held workshops across the state to explain how the algorithm worked and why it was harmful. To maximize accessibility for people in remote areas and people who could not travel, we created webinars and broadcase live to Facebook (in 2017, prior to the pandemic’s drive to allow for remote participation). We educated hundreds of people, including disabled program participants, their families and friends, Medicaid service providers, other advocates for the rights of aging and disabled people, and other concerned members of the public (here’s the link to the full education session).
Community Activation: We kept ongoing contact with clients, their families, and other interested people to share the latest news and information on how to participate in government meetings and comment opportunities. With our clients’ full partnership, we produced videos of their lives showing the harm of these cuts. These videos were shared hundreds of times and seen by at least 30,000 people. Here’s an excerpt of Shannon Brumley’s video (link to the full video):
Media: We worked with journalists inside and outside of Arkansas to share how harmful the algorithm was and how irresponsibly the state had used it. That led a three-part TV news series by Arkansas’s leading television-based investigative journalist and stories in national outlets highlighting the problems of AI-based decision-making. The media scrutiny compelled the state to fix errors in the algorithm and led to long-term pressure by state legislators to change the system. Here’s a promo for the three-part series (link to the first full part):