Keeping Our Families Together: Home and Community-Based Services 101 (by Jeneva Stone)
Rob and his sister as children, waiting for the school bus.
In 1998, when my son Rob became disabled at the age of one, I knew nothing about disability services or advocacy or rights. I just knew that I wanted Rob to live at home with us, where any child belongs. Rob was a busy toddler who loved going to the zoo, reading stories, watching Teletubbies, and he absolutely adored Buzz Lightyear.
Then, over the course of a long weekend, Rob went from 60 mph to 0, due to a sudden-onset genetic condition. After that, Rob could no longer speak, stand, sit or walk by himself. He needed all of his food, hydration, and medication delivered to his stomach by tube. Rob required specialized formula, medical supplies, and equipment. He needed a wheelchair, communication devices, and coverage for his many surgeries and hospitalizations.
But one thing had not changed - I wanted a good life for Rob: to live with dignity and respect in his community, to attend the public schools and to participate in the same activities that other kids did. Unfortunately, I had no idea how to make that happen. Even a close family member asked me if we’d ever give Robert up. “Never,” I replied.
The answer is Home and Community Based Services (HCBS): Medicaid “waiver” programs established by each state. “Waiver” means, ironically, that the eligible person is waiving their right to institutional care, the very situation those with disabilities want to avoid. Medicaid, though, guarantees institutional care for those who qualify, while those who want HCBS are often put on long waiting lists. If a child qualifies, getting a waiver slot means that families don’t have to spend down their assets to ensure their loved ones remain in their communities, where they belong.
But these Medicaid services need funding, right now, to help families like ours. We need everyone’s help to reach our legislators. The Biden Administration has made providing additional funds to HCBS programs a priority, but Congress has yet to act.
In May, the U.S. House of Representatives passed a third COVID relief bill, the Health and Economic Recovery Omnibus Emergency Solutions (HEROES) Act, which would provide additional funding for HCBS to reduce waiting lists, and crucial support for home health care workers and direct support professionals. The U.S. Senate is just beginning their own discussions on a third COVID relief bill. You can help by contacting your senator and letting them know it’s critical that they include support for the disability community from the HEROES Act:
1. We need to reduce waiting lists for Medicaid waivers.
Despite Rob’s complex medical needs, he was on waiting lists in Maryland for close to a decade--as are many children, right now. Private insurance does not pay for all the home medical services that Medicaid provides.
All U.S. states have Medicaid waivers for children. Many have adopted a specific child waiver known as a Katie Beckett waiver, named for the little girl who, in 1981, inspired Ronald Reagan to request the first changes to Medicaid that allowed children like Katie to leave hospitals and come home. Yet, across the country, states have a limited number of slots for these waivers, with many children on waiting lists, or “registries,” so the promise made to Katie Beckett is not yet a reality for thousands with complex medical needs and disabilities.
2. We need crucial funds for home health care workers and direct support professionals, including wage increases and PPE.
HCBS also pay for personal supports that private insurance does not cover. These include home nursing and health aides. In addition, HCBS programs provide direct support professionals (DSPs) to help people with disabilities look for jobs, attend college, and learn community living skills.
But how can our families hold onto staff, especially during the pandemic, when Medicaid wages are so low? Many DSPs are paid less than a living wage. Home nurses and health aides often make more in hospital-type settings. Our children cannot survive and thrive without these extra sets of hands.
3. We need an ongoing focus on the needs of people with disabilities throughout their lifespan.
Rob is now 23 and benefits from two HCBS waivers in Maryland, receiving help from home nurses and inclusion aides. With this support, Rob can go to the movies (he loves Star Wars and the Marvel Comic Universe), or to Capitol Hill to advocate for his rights, or attend a community college class.
But my family is still fighting for the supports Rob will need to keep him out of an institution as he ages, and we’re not alone. Medicaid is a state/federal program, and HCBS programs are options states can choose to establish; they are not required. Many Medicaid programs are chronically underfunded. Some states do not use the full range of federal Medicaid benefits to serve their populations. As a result, many children and young adults with disabilities are still forced into institutions, nursing homes, and intermediate care facilities.
In 1990, seven years before Rob was born, President George Bush signed the Americans with Disabilities Act (ADA), which created, most visibly, wheelchair ramps and curb-cuts, as well as many other rights and accommodations for people with disabilities.
One year after Rob became disabled, in 1999, the U.S. Supreme Court settled the case Olmstead vs. L.C., aka, “the Olmstead Decision.” Based on rights the ADA established, the Court ruled states could not segregate people with disabilities in institutions. States must instead provide community living supports to those who want them.
We must think of HCBS as a work-in-progress and build upon the vital work of disability advocates over the last 40 years. We hope to inspire more advocacy on your part. In future posts on HCBS and LTSS, we’d like to consider the following questions:
1. How can I keep my young child at home?
2. How can I keep my school-aged child in their community?
3. How will my child be able to grow up and live independently?
Ask your legislators about HCBS! Give them examples of how the world could be a better place for our families!
Jeneva and Rob Stone live in Maryland. Rob lives at home with his mom, dad, sibling, and two cats and a dog. He is a disability rights activist and a member of Little Lobbyists. Jeneva is the Little Lobbyists blog manager and a writer.