Rescuing Our Families: Home and Community-Based Services in COVID Relief (by Jeneva Stone)
Rob and his mom at the U.S. Capitol [image description: A woman wearing a black trench coat kneels next to a young man, seated in a wheelchair, who wears a an orange and black wheelchair cape. The U.S. Capitol is in the background]
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 answers were Home and Community Based Services (HCBS) and Long-term Supports and Services (LTSS): Medicaid “waiver” programs. “Waiver” means those who qualify don’t have to spend down their assets to ensure their loved ones stay out of institutions and remain in their communities. HCBS helps infants & toddlers, school-aged children, and teenagers & young adults. LTSS assists adults with disabilities through their senior years.
President Biden’s American Rescue Plan includes funding for vital HCBS, and, thanks to House and Senate Democrats, that funding that keeps our kids in their communities is in the bill moving through Congress. HCBS COVID relief includes additional funding for HCBS to reduce waiting lists, and crucial support for home health care workers and direct support professionals. The U.S. House of Representatives will vote on the American Rescue Plan at the end of next week, and then the legislation moves on to the U.S. Senate for budget reconciliation, the measure congressional Democrats will use to pass it.
You can help by contacting your representative and contacting your senator to thank them for including our children’s needs in the American Rescue Plan, and asking them to keep it in. Let them know:
1. Why 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. Why we need crucial funds for home health care workers and direct support professionals, including wage increases and PPE.
HCBS and LTSS 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. Why 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 LTSS 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 and LTSS 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. Let’s make the world 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.