Wednesday, July 26 marked the 33rd anniversary of the passing of the Americans with Disabilities Act (ADA). The ADA ensures that disabled people can’t be discriminated against when accessing jobs, schools, transportation and all other public entities, yet despite its existence many barriers still remain that keep true equality from disabled Americans. What many people don’t realize is that the future of many of the rights promised by the ADA are intertwined with our funding of Medicaid.
The pandemic brought to light the numbers of disabled people who have gone without the access to the home and community-based care — funded by Medicaid — that they need and deserve, leading to unnecessary institutionalization or overreliance on unpaid family caregivers to fill in the gaps in services. In fact, more than 650,000 people are on waiting lists for these services. For so many, the access they need hinges absurdly on a lucky draw — but this isn’t the Powerball ticket and $2 lost, this is the difference between a life of their choosing or a life cast away.
Worse, this deeply flawed system also needs something else to ensure equitable access: a strong direct care workforce. This workforce does the vital work of helping aging and disabled Americans live independent lives of their choosing, yet makes less than $12 per hour on average due to outdated rates dictated through Medicaid and paired with our society’s devaluation of the work of care. These highly skilled and empathetic professionals are the lynchpin to success and autonomy for millions to get the care and support they need.
Despite the life-sustaining actions that these workers perform every day, the main payor of their wages, Medicaid, has not recognized that value. The stagnant and insufficient Medicaid rates that state and federal dollars are used for have not been raised to ensure family-sustaining wages for these workers. For more than 40 years — since 1981, when the Medicaid Home and Community-Based Services (HCBS) system was created — there has not been sufficient oversight by the federal government on state rate-setting, making these rates both inadequate to support the cost of the services or to ensure a thriving workforce.
In April of this year, The Biden administration released the largest slate of executive actions for care in history, taking an important step towards ensuring transparency in the Medicaid aging and disability care system, including steps to ensure that these rates are increased and that wages for workers are where the majority of the dollars are spent.
The Biden administration also released a proposed rule July 25 that would use executive power to untangle the complex system behind Medicaid aimed at helping disabled people access services more easily. The Access Rule would require transparency in state rate-setting, including creation of groups of stakeholders to ensure oversight; and ensure that the majority of the Medicaid rates goes to workers, including for programs that despite being paid by tax dollars, are run by private companies through a system called managed care. These steps are critical in working towards ensuring fair, equitable access for all disabled people.
However, administrative actions only go so far. Without state legislatures and Congress to increase the dollars they put into the Medicaid program, the program can’t be modernized to meet the needs of the people waiting — sometimes for years — on lists. What’s more, lawmakers need to build workforce rates around real, family-sustaining wages for care workers. Making these changes would ensure that all disabled and aging people can live and thrive while staying in their homes and communities.
The intent behind creation of the ADA cannot be met without ensuring that those who need support and care can access it. It’s time that we invest fully in the system that allows disabled people to live in their homes and communities, so this country can live up to its promise.
Ai-jen Poo is president of the National Domestic Workers Alliance & executive director of Caring Across Generations and Nicole Jorwic is chief of advocacy and campaigns at Caring Across Generations.