Cathy Cranston of Austin, Texas, paid a visit to a friend. He uses a wheelchair, and the community attendant whom he relies on for getting in and out of bed, toileting, dressing, meals and more, has young children and missed a few days. During the COVID-19 pandemic this is common: Most community attendants are mothers or grandmothers, Cranston said, and school closures have them scrambling for child care. As head of advocacy group Personal Attendant Coalition of Texas (PACT), she is also a grandmother and a professional community attendant for 30 years, but this one she’s doing for free, because he’s a friend and she wants him to keep his home.
“But the reality is, not everybody has that informal support,” she said, “so then what happens is they go without.”
Another man in the Round Rock, Texas, area is one of those without “informal support,” the industry euphemism for unpaid family, friends or other individuals who fill in gaps in service, whom Cranston says the state often relies on and even expects. After undergoing numerous surgeries for the slow-healing, excruciating pressure sores that strike people in wheelchairs (often because of insufficient help that leaves people stranded in their chairs), the man fights to stay out of institutions.
Sometimes he can’t find attendants, Cranston said, and “he makes a decision to stay in bed and just gets up when he can… otherwise he’s in bed… It’s not a good quality of life and it only makes it worse for him… That already existed before COVID-19 and this pandemic’s only exacerbated it.”
Even before COVID-19, the home-care system in Texas was under severe pressure. Community attendants care for 178,000 people with disabilities and seniors living at home or otherwise in the community, and are paid through Medicaid at a base wage set by the legislature that is far below other jobs, resulting in a median 67 percent annual turnover rate. Adding in the severe disruptions of the pandemic makes people with disabilities and the elderly face the prospect of institutionalization at the most dangerous of times:
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Attendants’ “very, very low rate of pay” and lack of paid sick leave “present the risk of bringing the virus into the home of a person who is at high risk, which is a foolish plan to say the least,” said Dennis Borel of the Austin-based advocacy group, Coalition of Texans with Disabilities. “A failure of the community-care system would put our highest risk population into the riskiest locations. That’s a pretty frightening scenario.”
But this isn’t only about Texas. Nationally, the essential workers who provide home-based community services (HBCS) are low-paid and in short supply. With the advent of COVID-19, the frailties of these systems are being pushed to the brink. The warning signals from this and related issues have mobilized the disability community to protect their rights and access to treatment and critical resources like HBCS. In Washington, all eyes are on the stimulus: Congress has spent about $3 trillion without meeting vital needs of an at-risk population.
“There have been certainly some important first steps that have been included that are quite helpful, but many disability community priorities have not been included,” said Alison Barkoff of the Center for Public Representation, one of numerous national groups advocating for the disabled. “Specific priorities of the disability community have not yet really been a focus for Congress.”
The second bill, the Families First Coronavirus Response Act, included a 6.2 percent increase in Medicaid, which funds HCBS. It provided some workers with paid sick and family medical leave, including provisions for family members to step in when service has been disrupted due to COVID-19 or otherwise (although only 12 percent of essential workers are covered). The third bill, Coronavirus Aid, Relief, and Economic Security (CARES) Act, funded state and local governments with $400 billion, and issued $1,200 Recovery Rebates to individuals, which advocates made sure would not count against means-tested programs like Medicaid and Social Security. It also funded state emergency response, disability housing and independent living, and special education.
“So there were some things in there, but we have been advocating very, very hard on targeted funding to home and community-based service systems,” Barkoff said. “We know the most important things that we can do to help people with disabilities who are at high risk for being infected and having really poor outcomes if they get the virus is helping people stay at home… It’s the concept of an HCBS state grant program that is really a top priority.”
This month the House of Representatives passed a $3 trillion Health and Economic Recovery Omnibus Emergency Solutions (HEROES) Act. It includes over $900 billion to state and local governments, a second round of $1,200 Recovery Rebates, a 14 percent boost in the federal contribution to Medicaid, a 10 percent boost in HCBS and supports and paid leave for attendants and family caregivers. It faces resistance in the Republican-controlled Senate, where Majority Leader Mitch McConnell cited the need to slow spending.
While national advocates push for the follow-up stimulus, Barkoff urges activists to put pressure on the states, too.
“On the HCBS side there’s so much flexibility that states have,” she said. “There are a number of types of emergency applications that states have been submitting to the Centers for Medicare and Medicaid Services, and they have a lot of flexibility about… some positive things that can make people accessing services easier, bringing new providers online, waiving requirements around pre-authorization, or allowing people to get longer fills for their medications or supplies than would normally be allowed, and that is also another place where I think state advocacy is so important.
“Then [there] is these big chunks of money that have gone to states, whether it’s the 6.2 percent [Medicaid] bump or the big pot of money that went to states for recovery or even the education funds – it’s going to be really important for the disability community to advocate at the state level so some of those funds flow into disability systems, whether it’s about special education or HCBS systems. I mean, you could see those monies going completely to other priorities at the state level.”
On the care-rationing issue, after successfully urging the Department of Health and Human Services’ Office of Civil Rights to release a statement underscoring the equal rights of the disabled for access to treatment and equipment such as ventilators, CPR and allied groups focused on state-level actions by filing complaints against eight different states challenging their potentially discriminatory Crisis Standards of Care plans.
State-level discrimination can extend to PPE as well, Barkoff explained.
“In terms of access to PPE, you know there’s limited supplies and in many states community providers are not considered essential health workers, or they’re providing [PPE] in institutional settings but not in community settings. To me, that is discrimination and really places people at serious risk of getting infected for COVID-19. It sounds like some people who use equipment at home are having a hard time getting that equipment… because it’s being prioritized to hospital settings.”
In Texas, Cranston heads the advocacy group, Personal Attendant Coalition of Texas (PACT). When asked about social distancing in her close-contact line of work, she laughed at even the notion. The fears of attendants and recipients both over bringing the virus into homes has injected a whole new level of uncertainty into being able to provide service. “That’s why it was so important to have PPE place from the very beginning. Our state wasn’t fully prepared and we understand that. Nobody thought, ‘Oh gosh, here comes a pandemic,’ but the reality is… our state leaders have a responsibility to the people that receive services and… they have a responsibility to have these these things put in place.”
Cathy’s husband, Ron, relies on HBCS and said that one of his caregivers lost three-quarters of her hours due to COVID-19. Under the system, arranging caregivers is his own responsibility, and he said that so far “I’ve been very fortunate” to receive his 25 hours of weekly care, but concerns about safety and unpredictability are a constant. For example, attendants are predominantly female and some lack adequate childcare with schools being closed.
According to the Cranston and Borel, low wages and lack of benefits are forcing caregivers out of the profession, leaving clients facing the prospect of institutionalization. Fifty-four percent of attendants rely on means-tested assistance like SNAP. The base pay of these essential workers, as set by the legislature, is $8.10 per hour. By contrast, she pointed out that local grocery stores are hiring, increasing wages and taking steps to keep their workers safe while offering hazard pay, leaving the important work of attendants underpaid by comparison. She said the median age for attendants is over 45 years old, and the low pay is not bringing younger workers into the field. “It’s not sustainable.”
“The chicken place a block from my office starts pay at $15 an hour. There’s a sign at the pizza joint around the corner that says our drivers make up to $20 an hour,” Borel said. “We have gotten into a society that values a pizza or a chicken sandwich more than it values the dignity and health of our fellow human beings.
“They’re spending massive amounts on federal supports to bail out certain industries. So we’re going to bail out the cruise ship industry before we’re going to bail out our direct-care workers who go into the homes of people at the highest risk of severe illness. I understand there’s low-paid workers at hotels and cruise ships and they need to be taken care of as well, but if you’re really interested in the workers, why don’t you include the workers currently at the frontline of this pandemic?”
Cranston joined Barkoff’s call to boost HBSC pay and sick leave with the billions flowing to states through federal stimulus dollars and increased Medicaid funding. For Texas, she called on Gov. Greg Abbott and the legislature to use Budget Execution Authority to reapportion funds to solve this long-standing problem, or to tap into a $8.5 billion Rainy Day Fund maintained by the state.
She also advocated Medicaid expansion, which in Texas would insure more people at 90 percent federal expense and would bring home tax dollars that her state pays to effectively expand Medicaid for other states. Part of the Affordable Care Act, Medicaid expansion remains available to 14 states.
Whether at the state or federal level, Barkoff said that in the new coronavirus environment of empty offices and unanswered phones, activists are having success using email and social media. They’re pressuring the leadership using shared hashtags and videotaping their personal stories as attachments, with impassioned pleas like Cathy Cranston’s:
“We have to address this issue. It is not going to go away and… they must do it now because what… we’re saying is people with disabilities’ lives are not worth it, as well as the workers’ that provide those services. We’re saying, let them die, it’s okay.”