Medicaid 101: Human Infrastructure & Civil Rights (by Jeneva Stone & Laura Hatcher)

Little Lobbyist Simon Hatcher poses in front of the U.S. Supreme Court steps with his dog. [image description: A light-skinned disabled boy poses in his wheelchair in front of the white marble steps of the U.S. Supreme Court. The Court’s Corinthian columns and can be seen in the background. The boy holds the leash of his dog, a large curly white-haired breed whose long pink tongue is sticking out.]

The Senate and the U.S. House of Representatives have voted to allow legislators to begin drafting President Biden’s $3.5 trillion “human infrastructure” package through budget reconciliation. 

The Biden Administration has asked for $400 billion for Home and Community-Based Services (HCBS), which are part of the federal Medicaid program, to be included in the $3.5 trillion final package. To this end, Senator Casey and Representative Dingell introduced the Better Care Better Jobs Act, which designates funding to reduce or eliminate waiting lists for HCBS, increase wages for home health aides and direct support professionals, and allow hundreds of thousands of children and adults with disabilities to live where they choose — outside of institutions. 

Home and Community Based Services, known as HCBS, are skilled supports – aides, home health care, and skilled nursing services, etc. — that enable disabled people to live in their own homes and communities, contributing their talents and skills, working, volunteering, and learning. HCBS provide the human infrastructure for disabled children and adults, and their non-disabled family members, to be fully included as citizens, just as roads, bridges, airports and public transportation help people connect, get to work, travel for business and pleasure, and allow goods to be delivered across the country. 

HCBS is a critical part of  Medicaid, but it can be difficult to obtain and is not available to everyone who needs it. There are currently over 800,000 people on decades-long waiting lists for HCBS, and far more people qualify who aren’t even on waiting lists yet. What’s more – people who qualify are guaranteed care in an institutional setting, but not in their own homes – which is far less expensive and what most would prefer.

So, what’s the problem? What’s the history here?

Medicaid 101

Medicaid was established by President Lyndon Baines Johnson (LBJ) in the Social Security Act of 1965, part of his Great Society initiative, perhaps the greatest human infrastructure achievement of the 20th century. Medicaid was created to provide health insurance and services to the poor, elderly, and/or disabled. The 1965 law also entitled people who needed 24/7, or nursing-level, care to receive that care in an institutional setting without a waiting period. This is frequently referred to as Medicaid’s “institutional bias.”

Disability activists Mia Ives-Rublee (center, Director of the Disability Justice Initiative at the Center for American Progress) and Elena Hung (right, Co-Founder of Little Lobbyists), two young disability activists, and two dogs in front of the U.S. Supreme Court. [image description: Left to right are seated on the pavement a large white curly-haired dog, a light-skinned boy with glasses, a large white short-haired dog, a light-tan skinned woman with short black hair, a light tan-skinned young girl with black pony tails, and a light-tan skinned woman with black hair pulled back. In the background is the facade of the U.S. Supreme Court.]

But, as we know, nursing homes and other facilities cannot duplicate the love and support of friends and families, nor opportunities for growth, education, and community engagement. The Covid-19 pandemic has also shown us how dangerous institutional care really is, a point disability activists have been making for decades. Home care is also less expensive than facility care. 

Until 1983, Medicaid did not provide in-home care. Throughout the 1950s, ‘60s, and ‘70s, disability and parent activists fought for the rights of disabled people to live in their communities. The independent living movement was founded by Ed Roberts, and Judy Heumann fought for the implementation of Section 504’s antidiscrimination provisions. The Arc of the United States was founded by parents to help keep children with intellectual and developmental disabilities at home. 

A tipping point came in 1981, when the story of Katie Beckett came to the attention of President Ronald Reagan. Katie was a 3 year old girl who had developed disabilities after a brain infection. She was forced to live in a hospital for three years because she needed a ventilator and Medicaid would not pay for her care to be provided at home. 

President Reagan was moved to act, and with the support of the president, the disability rights movement was able to make progress toward providing home care for medically complex persons with disabilities. In 1983, Congress amended the Social Security Act to allow states to “waive” Medicaid’s institutional care restrictions to provide home care. For dependent children with disabilities, family income could also be waived. Congress considered these “waivers” to be demonstrations, meaning states could develop their own programs to do what worked for them.

The result is our contemporary suite of Home and Community-Based Services programs, part of Medicaid’s state-federal partnership. All states now have some form of a “Katie Beckett waiver,” which allows medically complex infants and children to be cared for in their homes. Many states also have Autism waivers, some have a waivers specific to people with rare and expensive medical conditions, and others have general developmental disability waivers. Each state is allowed to limit how many people can receive services and to establish waiting lists for services. 

Because of this variability from state-to-state, Medicaid waivers for HCBS have a patchwork quality. Who’s eligible for services depends on where you live, and if you move between states, you lose your services and have to reapply. 

The result is that American citizens with disabilities have the right to funds for health care in an institution, but NOT to receive funding for health care in their own home.

Home and Community Based Services are a Civil Right

With the passage of the Americans with Disabilities Act (ADA) in 1990, and the 1999 U.S. Supreme Court Olmstead Decision, the disability community achieved clarity: living in the community of your choice is a civil right. 

Yet decades later, this civil right is still not attainable for hundreds of thousands of people with disabilities, and disability rights advocates continue to fight to expand and improve access to HCBS. States balk at the “cost” of transitioning disabled people out of institutions and into their communities as they continue to operate under the false assumption that institutional care is “cost-effective.” States can still shirk the Olmstead Decision by claiming they don’t have enough money to let everyone who wants to live in the community of their choice. 

Caregiving IS Infrastructure

Nine young Little Lobbyists pose on a tree-lined Washington D.C. street with the U.S. Capitol building in the background. [image description: Nine young children with various skin tones pose on a city street with varying shades of pavement (grey, dark red, tan). Some of the children are in adaptive strollers with medical equipment, others stand. They are all goofing off, adorably.]

This is why the disability community, our families, friends and non-disabled allies need Congress to pass the Better Care Better Jobs Act to provide full funding for HCBS. We need to eliminate waiting lists, establish new state programs, and fulfill the integration mandate of the ADA. 

We need states to understand how critical it is to support families in their own homes and communities. The Better Care Better Jobs Act will create 516,000 new good paying care jobs to bolster the caregiving workforce, which is currently in crisis due to our country’s rapidly aging population and the ravages of the pandemic. It will also allow more than 1.1 million unpaid family caregivers to return to the workforce, dramatically reducing the financial impact of caregiving on families.

Most of all, we need to demonstrate that it is entirely possible for LL of us to survive and thrive outside the walls of institutions; contributing our skills, talents, and tax dollars to America.

We are the face of human infrastructure, and we are deserving.

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Jeneva Stone is the Little Lobbyists blog manager. She is also a writer. Laura LeBrun Hatcher is the Design and Communications Director of Little Lobbyists, a creative consultant and design educator.