Disability rights activists demand services now!

Brian Shea, a longtime disability justice leader and WWP member in Boston, participated in these actions.

Fifty disability rights activists from across the country converged on Washington, D.C., and joined in direct actions from May 8 to 11. American Disabled for Attendant Programs Today, an organization of national disability justice activists, mobilized for these actions.

ADAPT’s demands focused on ending institutional bias; the need for home- and community-based services; affordable, accessible, integrated housing; expanding personal care attendant services; and ensuring living wages for these workers.

The organization is demanding funding for support and services for people with disabilities to live in their communities with family members, loved ones and friends, instead of being institutionalized in nursing homes. Medicaid prioritizes funding for nursing facilities and institutionalization, as these are viewed as mandatory services, but community-based services are considered optional. Medicare and private insurance companies do not fund home- and community-based services. This is institutional bias.

In order to live in the community, people with disabilities would need to be provided with long-term services and supports. These include durable medical equipment, peer specialists, mental health services, personal care attendants and support from Independent Living Centers. 

ADAPT demands that home- and community-based services become mandatory Medicaid services funded by the federal government. The group demands an end to discrimination in eligibility for long-term services and supports, based on type of disability, age and other factors, and calls for eliminating service or cost caps. Medicaid should be required to fund programs that assist disabled people with parenting and taking care of pets, so they can stay in their homes and communities.

Fund human needs, not war!     

Shea stressed, “$4 billion was given to Lockheed, Grumman and Raytheon to carry out NATO’s expansion and war on Russia in the Ukraine. Congress authorized the funds right away, and Biden signed it. They actually gave more money than was requested, but the waiting lists for affordable housing and home- and community-based services are years-long.”

On May 8, Mother’s Day, ADAPT organized a speak-out focused on the vast majority of people doing home care and personal care who are women, particularly women of color.

Shea explained, “In Massachusetts, personal care attendants are organized by SEIU 1199, but they still do not have vacation time and only limited sick time. They managed to get COVID-19 pay but will lose this at the end of July, which can mean a cut of $2 an hour.

“We are demanding personal care attendant services be required under the Affordable Care Act and in the Medicaid and Medicare programs. We want these workers to be paid $20 an hour. It is a dire situation in a state like Texas, where these attendants are paid $8 per hour. Universally, there is trouble finding people to work these shifts, because of low pay and the precarious nature of the work.”

Wheelchair users’ militant action

On May 10, 50 people in wheelchairs blocked the entrances to the American Health Care Association, the largest lobby for nursing homes. They were chanting “I’d rather go to jail than die in a nursing home!” When they refused to move, 16 people were arrested.

Shea explained, “This communicates what a life-and-death situation we are in. The American Health Care Association purchases politicians, keeps profits high, and regulations or oversights low-to-nonexistent and keeps wages of workers as low as possible.”

National ADAPT’s website states: “COVID-19 has killed over 32,750 disabled people in substandard nursing homes in the United States, with a disparate number of those being people of color. National ADAPT is compelled to speak out against this widespread and horrifying human rights catastrophe.”

The National Council on Disability reported Oct. 29, 2021, that 181,000 people with disabilities living in long-term care homes died from COVID-19 by March 2021. Shea stresses the number of COVID-19-caused deaths in these facilities is vastly undercounted.

Shea concluded: “In a society driven by profit like capitalism, some people are disposable, because we are not creating profits for the system. Our needs are turned into commodities. But in a society driven by human needs like socialism, every social resource is put towards keeping relationships and communities together.”