It’s Time to Expand Alabama’s Funding for Home and Community Based Services

Courtesy+of+Kiichiro+Sato

Courtesy of Kiichiro Sato

Cole Adams , Guest Columnist

When Nick Dupree sued Alabama’s Medicaid Agency, his goal was simple yet profound: to remain in his home while receiving the care he needed to survive. Nick was born with a rare, severe neuromuscular disease that meant he needed permanent, consistent assistance to breathe.

Ventilator-dependent individuals like Dupree need constant care and monitoring of their breathing technology in order to ensure that the technology is working properly. Without this attention, ventilator-dependent individuals face extreme difficulties breathing, which could lead to death.

Dupree represents many Alabamians who, without constant care from skilled providers, would suffer severe restrictions in everyday living, or could even lose their lives. Many of these people with disabilities have had to contend with these challenges since they were born, and they will be contending with those challenges for the rest of their lives. 

Because these challenges are life-long, people with disabilities and caregivers need supports, often intensive, at every stage of their lives. Without the proper supports in place, people with disabilities often have few alternatives to institutionalization.

These institutions are not the best place for people with disabilities to receive the care they need. For instance, individuals who are placed in institutions are often over-medicated and subjected to unnecessary segregation and restraint. 

Following a push to end state-funded institutions such as Partlow in Tuscaloosa, most institutionalized individuals end up in nursing homes, where neglect and abuse run rampant. Additionally, the coronavirus pandemic illustrated the deadly nature of residing in these facilities, as more than 200,000 COVID-19 deaths were nursing home residents or workers.

Traditionally, Medicaid only covers the comprehensive care required by individuals with disabilities in nursing homes or institutional settings. However, starting in the 1980s, the Centers for Medicare and Medicaid Services started piloting programs to allow states to offer the services usually reserved for facilities in their homes and communities

Since CMS was ‘waiving’ the requirements, these programs started bearing the name Home- and Community-Based Services (HCBS) Waiver Programs. HCBS Waivers garnered some popularity, and states began funding and receiving federal funds for these programs.

However, many individuals who were in institutions or at risk to be placed in institutions were still not receiving access to HCBS Waiver Programs despite there being available funding and resources. Hoping to receive the care they needed in their homes, two women sued Georgia’s Medicaid Agency. 

They alleged that their unnecessary segregation from the community was a violation of Title II of the Americans with Disabilities Act (ADA), positing that the seclusion was fundamentally discrimination on the basis of disability. 

The case was taken to the Supreme Court in 1999, where Justice Ruth Bader Ginsburg spoke for the majority, mandating that services provided to individuals with disabilities should be provided in their homes and communities when it is practicable, reasonable and available.

Understanding the mechanisms now in place to fund HCBS Waivers for people with disabilities is a crucial component to appreciating the disability rights movement that has fought to be heard and accepted in American culture, society and policy.

When the ADA was first being debated, disability activists longed to be included in the conversations. “Nothing about us, without us!” was their fundamental cry. When speaking out didn’t garner the necessary support, showing up did.

Activists with physical disabilities marched around the Capitol Building and other federal buildings in D.C., only instead of marching with their crutches, canes, wheelchairs and other devices, they limped, waddled and crawled up the iconic Capitol Building steps. 

The “Capitol Crawl,” as it came to be known, was fundamental in shaping disability policy, and it demonstrated the determination that people with disabilities displayed when fighting for the basic civil rights they were entitled to.

That same determination motivated Nick Dupree. Dupree’s ventilator and other related services were provided to him by the State’s Medicaid Program until he reached the age of 21. But then, due to a gap in coverage by Alabama’s HCBS Waivers, Dupree would lose these services when he aged out of the children’s Medicaid program. 

Resolved not to end up in an institution and understanding his fundamental rights, Dupree filed a lawsuit. The State ultimately settled, creating an HCBS Waiver for Alabamians like Dupree who fall into that coverage gap.

Tragically, scores of Alabamians find themselves in similar situations to Dupree. Alabama’s HCBS Waiver slots are extremely limited, with only about 17,000 spots existing to serve the entire state population. While the Supreme Court required states to affirmatively place individuals in their communities, they, along with lower courts since, have allowed states to maintain waiting lists for services. 

Nationwide, well over 700,000 individuals are kept on waiting lists. While the state of Alabama doesn’t maintain public numbers for their waiting lists, low estimates for those on the lists are in the thousands.

Deterred by the lengthy wait times, the fear of denial of coverage or the daunting task of dealing with mountains of red tape, untold numbers of Alabamians never even apply for HCBS Waiver Programs. Instead, they are either forced into facilities, forced to pay high costs for their care or go without the care and services that are crucial to their livelihoods. 

HCBS Waivers are extremely necessary, and yet they are severely underfunded. This fiscal year, the Senate, through the process of budget reconciliation, is considering expanding funding for HCBS Waivers as well as expanding funds for additional Medicaid programs, such as Money Follows the Person and tweaking the Spousal Impoverishment Requirement.

Funding HCBS Waivers will be a great way for Alabamians with disabilities to receive access to the care they need. In considering expanding this funding, the Senate should recall the desperate pleas of “Nothing about us, without us!” in the movements of the past.

Collectively, we all should remember those words too, and we should also remember the brilliant and courageous work of activists and self-advocates like Dupree. 

Dupree passed away in 2017, but his legacy lives on, both in ensuring that ventilator-dependent Alabamians have continual access to care, but also in creating a more equitable Alabama for those with disabilities. 

We should carry his legacy on, and we should endeavor to elevate the voices of Alabamians with disabilities as we advocate for their inclusion in every aspect of society, especially when it comes to their access to healthcare.