Home care for people with disabilities is massively underfunded. Biden’s Build Back Better bill could change that

Every day, Marcos Castillo’s home care attendant sets up his electronics, makes his coffee and cleans up his living area. Mr Castillo had a spinal cord injury for the last 20 years that means he is now a quadriplegic.

“So in order for me to live a more independent life, I need home based and community based services, such as my attendant care services, my personal care attendants, in order for me to be able to do my day to day activities,” he told The Independent. But he only three hours to get everything set up on a daily basis.

“So I have to be very sure that after she leaves, after she does her three hours, I am set up so that anything that I need to get to, be it something, as far as like my phone, my communication to the outside world, in case I need to call emergency services, for whatever reason,” he said.

Mr Castillo is one of 2.2 million people, according to the Agency for Healthcare Research and Quality, who benefits from Medicaid Home and Community-Based Services. The program allows for both elderly people and people with disabilities to receive home care in their homes rather than in nursing homes or institutions.

Disability rights advocates have long advocated for the programme to ensure people can receive care and services in their own home rather than in nursing homes. But as the coronavirus pandemic mowed through nursing homes and other long-term care facilities, it created new urgency to ensure that people could receive care in their own homes and possibly avoid needless deaths. Now, as President Joe Biden and congressional Democrats hope to pass their massive social spending bill, home and community-based services are an essential part of what they consider their Build Back Better bill.

Medicaid Home and Community-Based Services were first put in place in 1981 and allow states to develop waivers so people in need can access long-term care at home. But the program has often dealt with staff shortages and low wages, as separate studies from the Kaiser Family Foundation found. Similarly, there is an extraordinarily long waitlist that is estimated at around 820,000. The waitlists often mean that parents have to put their children on the in the hopes that the queue is opened by the time their child reaches adulthood.

That is the case with Mary Russell, a doctor with Atrium in the Charlotte area of North Carolina. Two of her four children are autistic, including her daughter Catherine, who is 12 years old and whom Dr Russell put on a waitlist. The Russells started the process in February of last year and finally got her on the list in October of last year.

“Well, the wait list is very long in North Carolina. We were told eight to 10 years. And so when she turns 18, we want her to have services,” she said. “And the services that we were told, having the Medicare waiver would provide, include day programs, work opportunities, and other services.”

Dr Russell said her family is fortunate to be able to pay for certain services but still wants her daughter to have long-term support and services when she gets older.

In response to this, Mr Biden proposed spending $400bn in home and community-based services as part of his infrastructure plan. When that number was still the likely choice, Dr Russel praised what it could mean for her kid.

“Oh, it would make such a difference for Catherine when she comes of age,” she said. “Right now as a child, she has what she needs, but we’re going to need some help for her later on.”

But that number was pared down to $150bn in the framework of the Build Back Better plan that House Democrats hope to vote on when they return next week and then send it to the Senate. Dr Russell said she was worried about the cut in the number when it was first being hinted at.

“It does concern me. I think that this particular problem will only get better if we fund it adequately,” she said. “And unfortunately disability funding is extremely underfunded in schools and in the community.”

Similarly, Maria Town, the president and CEO of the American Association of People with Disabilities said that while the number was not what she would have liked, it still would go a long way.

“$150(bn) is still an incredible amount and with that we can see a number of states, somewhere around 30 states, work to raise wages for direct support workers and reduce their HCBS waitlist significantly,” she told The Independent. “I think it would be by different amounts in each state depending on the particular ways that the states plan to manage the funding that they receive.”

Disability rights advocates and home care advocates also know that the deaths that swept through congregate care settings gives them a unique political opportunity. A virus like Covid-19 was far more transmissible in congregate care facilities and at one point, a third of the people the virus killed were in nursing homes. And even for people who didn’t die, the pandemic took its toll.

“And what ended up happening was right after the pandemic started, I began to get pressure sores and sure enough, during the whole pandemic, I ended up having six surgeries because I ended up getting a pretty extensive pressure sore, which is something that I had never dealt with because I’m hypervigilant about my skin, about my health,” Mr Castillo said.

Ai-Jen Poo, the director of the National Domestic Workers Alliance, said that public awareness increased about the need for home services after the pandemic.

“I think the public awareness about the risks of congregate settings and how much needs to be done in order to secure those settings to be safer. But also, how much has to be done to actually create the services in the context that people want them in. People want to age at home and in place,” she told The Independent. “And we really don’t have the workforce or the infrastructure in place to support that.”

Similarly, Ms Poo said that people’s quality of life is much better when they live in their communities and it is a more cost-effective means of delivering services.

“I think the pandemic highlighted the need for a greater investment in home and community-based services in a number of ways,” Ms Town said, also noting how the pandemic showed how HCBS also provided adequate services for education and students with disabilities were unable to receive adequate services without HCBS.

“It would have improved the quality of lives, our families and the workers who support us. It quite literally would have saved lives,” she said. In response, the Care Can’t Wait coalition, which includes NDWSA, the Service Employees International Union and disability rights advocacy groups have pushed for a unified front to advocate not just for home and community-based services but also for policies like child care and paid leave, the latter of which was initially removed from the bill before House Speaker Nancy Pelosi put it back in the Build Back Better legislation.

Ms Poo credited the work of disability rights advocates for raising the voices for passage of the measure, specifically noting how the ARC has collected about 10,000 stories.

“We have thousands of stories from care workers and family caregivers about what a transformative difference this investment would make in their lives,” she said. “So we’re going to be every single day, engaging with members of Congress, with the media, to really push on elevating these stories and demonstrating in real time, how widespread and broad the support for this measure is.”

Ms Town was quick to note that while the current push came out of the ashes of the destruction the pandemic wrought, the movement for home care was not that new and goes back to the beginning of institutionalization.

“The Care Can’t Wait Coalition, the push you are seeing around the response to covid and covid recovery is not just a reflection of the advocacy that happened over the past 18 months, it’s a reflection of the advocacy that happened over the past 50 years, over the past hundred years,” she said.

At the same time, now that the House passed the bipartisan infrastructure bill last week, both chambers will begin debating the Build Back Better Act and the legislation will likely face difficulty in the Senate. A spokesperson for Arizona’s Democratic Sen Kyrsten Sinema, Mr Castillo’s Senator, who previously objected to the bill’s old $3.5 trillion price tag, didn’t respond to a request for comment.

Mr Castillo said he is empathetic to Ms Sinema’s political dilemma given that he is a from a fairly conservative county in Arizona but also expressed frustration.

“Yuma county is extremely red, so I hold certain conservative values, so I can see the tightrope that she is trying to walk on,” he said in an interview. “But politically speaking, it’s not going to be advantageous to her. And speaking from an advocate point of view, she’s really doing a disservice to our community.”

However, Sen Joe Manchin of West Virginia, another conservative Democrat who helped bring the price tag of the bill down, did tell The Independent in September that the beginning of life and end of life “is a high priority.”

Ms Poo said increasing pay is also about valuing the necessary work of home care workers, who are often women and people of color.

“And the fact that we are now in a new, New Deal moment, and we have the opportunity not just to include these workers, but to put an investment in these jobs becoming good jobs front and center in the agenda is actually not only a profound opportunity, but really a question of basic equity and justice.”

For Mr Castillo, home care is the difference between not being able to move through the world and being able to live a full life.

“If we don’t have that initial assistance in the beginning of the day, we can’t adapt to the rest of the world, in order to be independent,” he said.