Brad Dougherty
Everyone can expect to wait in line at the amusement park. No one should have to queue up for healthcare.
If you’re wondering what life is like for many disabled folks in the United States, think about those television commercials for amusement parks like Great America.
You see people of all ages having all kinds of fun. They ride wild roller coasters and eat cotton candy. It’s a perfect summer day.
Now think about what these commercials don’t show—the most unamusing and inescapable aspect of a day at the amusement park, which is waiting in lines. It’s just like car commercials where there’s never another vehicle on the highway and ads for tropical resort vacations where the loving couple have the oceanside beach all to themselves.
Disabled folks spend a lot of time waiting in endless, slow-moving lines. Except these lines are more like bread lines than amusement park lines. When you finally make it to the front of an amusement park line, you receive something fun and frivolous, like a roller coaster ride or cotton candy. When you finally make it to the front of a bread line, you receive something you can’t live without, like bread.
Sometimes disabled people wait in line for years. And the lines are often invisible. We’re stuck in limbo.
Take, for example, the HCBS waiting lines. HCBS stands for Home and Community-Based Services. Suppose you’re like me and you need the assistance of another human to do the everyday stuff everybody does, like putting on your pants, washing your clothes, taking a shower, and so on. If your state has HCBS programs, it might pay for people to come to your home and assist you. That’s what I do. I’ve hired people to assist me through an Illinois HCBS program for thirty-five years. The state pays the wages of my assistants. It’s a great thing.
But I’m lucky. A study by the ADA Participatory Action Research Consortium found that, in 2016, the largest HCBS program had a nationwide waiting list of 656,195 people. Texas was the state with the largest waiting list of 232,068 people.
What do people on waiting lists to receive home-based services do in the meantime? This is a damn good question. It’s not like they can hold off showering or putting on their pants for a year or three. I don’t know what I would do. I sure couldn’t afford to pay the wages of my workers out of my own pocket. I guess before long I’d be forced to wave a white flag and go to some stinking nursing home. There are no waiting lists for that.
“Once admitted to a large ICF,” the lawsuit said, “people quickly become isolated from their families, friends, and communities.”
In Illinois, where I live, there isn’t supposed to be a waiting list to receive help from the HCBS program that serves me. In 1992, the state agency that administers this program informed people applying to be served by it that new applications were not being accepted and they would have to go onto a waiting list. Fortunately, some of those people got riled up and sued in federal court and the judge ruled that establishing a waiting list for that service was illegal.
In a hearing during the case, the administrator of the program warned the judge that without a waiting list, the program would run out of money and be forced to close down by year’s end and everybody being served by it would probably go to a nursing home. He said it would be forced to take services away from the program’s existing 13,000 clients to fund the application process.
Guess what? That didn’t happen. But nevertheless, I’m told, this program now has a de facto waiting list of about 7,000 people. That’s how many are waiting to receive their initial evaluation to determine their eligibility for services. I guess, technically, it’s more of a backlog or logjam than a waiting list. Whatever. All those people are still stuck in limbo.
Similar problems are occurring in programs for people with disabilities all over the country. In Indiana, there’s an HCBS program known as CHOICE. That’s the acronym for Community and Home Options to Institutional Care for the Elderly and Disabled. Even the acronym leaves out the disabled.
Testifying in a court case filed in 2016, an official of the Division of Aging of the Indiana Family and Social Services Administration, which administers CHOICE, said that in 2017 and 2018 there was a waiting list of nearly 2,000 people. And yet during those years, the official acknowledged, the CHOICE program “reverted large sums of unspent money” back to the state treasury instead of using it to reduce that list. Another witness estimated that the amount of returned funds could have been in excess of $1 million.
In Ohio, a federal class-action lawsuit that became known as Ball v. Kasich was filed in 2016 on behalf of people with intellectual and developmental disabilities in that state who were tired of waiting for HCBS. It alleged that the plaintiffs were at serious risk of being institutionalized against their will in intermediate care facilities, or ICFs, for people with intellectual disabilities.
It added, “Once in the ICF system, people often remain institutionalized indefinitely.”
The lawsuit said approximately 2,500 ICF residents in Ohio were on HCBS waiting lists for home or community-based services, and that “the median wait time for people in ICFs to access these services is thirteen years.” It also said that, all told, more than 40,000 Ohio residents with intellectual and developmental disabilities were on HCBS waiting lists.
Three years later, no final ruling has been issued.
The fact of the matter is that HCBS supply has not kept up with rapidly increasing demand. United Cerebral Palsy and the ANCOR Foundation put out an annual report called “The Case for Inclusion” and the most recent edition, for 2019, says that HCBS waiting lists have tripled since 2005. Only fourteen states, down from eighteen in 2016, report having no waiting list or a small waiting list.
And it’s not just HCBS that disabled people are waiting for forever. There’s also DME. That stands for Durable Medical Equipment, which includes wheelchairs, hospital beds, ventilators, and other pretty important stuff. Disabled folks spend a lot of time waiting for delivery of our precious DME.
For example, the California Children’s Services program provides healthcare coverage to approximately 200,000 Californians under age twenty-one with disabilities such as cystic fibrosis, hemophilia, or cerebral palsy. Eligible families must have annual incomes under $40,000 or have out-of-pocket medical expenses expected to top 20 percent of the family’s adjusted gross income.
One of the program’s essential functions is to help these children acquire the DME they need. But a report titled “Threading the Labyrinth,” by the Lucile Packard Foundation for Children’s Health, found that 22 percent of families responding to a 2017 survey reported waiting a year or more to receive DME through this program. One family said it was still waiting after two years to receive a commode for a disabled boy. The boy was five years old when the family’s commode quest began. If he ever received his commode, I bet he outgrew it by the time it arrived. That could be why 63 percent of respondents to the survey said they paid out-of-pocket for DME they believed should have been covered by another party. They just gave up.
And let us not forget about good old Social Security. A whole lot of disabled folks spend a whole lot of time waiting to receive that, too. It’s a particularly excruciating limbo.
If you become disabled and you apply to start collecting the Social Security disability support you’ve paid into all of your working life, you may well be initially denied even if you are legitimately disabled. You can appeal that decision but you may then wait eighteen months or more for your case to even receive a hearing from a judge, let alone for a decision.
What happens while you’re stuck in that limbo? The Washington Post reported that, in 2016 and 2017, 18,701 people died while waiting for a hearing.
In 2017, the average waiting time for a Social Security Disability Insurance hearing to determine benefits eligibility reached a record high of 605 days. That’s about twenty months, according to my calculator. The Social Security Administration says the wait time has been reduced, from more than one million hearing decisions pending to about 720,000—thanks to $290 million specially allocated by Congress for that purpose. One of the agency’s “most critical priorities,” it adds, is to reduce that wait to 270 days by the end of federal fiscal year 2021.
That means people will be stuck in Social Security limbo for only nine months.