Decent folks don’t want to admit it, but Arizona’s caregiver policies are unsustainable. And inequitable.
by Amy Silverman | illustration by Jess Suttner
Right up front, I need to let you know that I’m about to pose a question I can’t answer. Here goes.
Who deserves to be a paid caregiver?
I don’t honestly know. And I’m not asking you to answer the question. Just consider it.
Caregiving is a buzzword these days (in my social media feeds, anyway), but it’s existed since ancient times, when family members took care of those who couldn’t take care of themselves. The Renaissance brought monasteries and convents where monks and nuns served as caregivers; the men were less involved as time went on. These were the earliest institutions for people with disabilities.
In the U.S., institutionalization as the preferred method of care lasted into the second half of the 20th century, ultimately made unfashionable by the horrors revealed at Willowbrook State School in New York and other notorious dens of neglect. Institutions still exist in Arizona today, though numbers have declined dramatically.
There are far fewer such settings in the country than there were just a couple decades ago. The U.S. Supreme Court decided in 1999 that two women with developmental disabilities were being wrongly kept against their will in a psychiatric hospital in Georgia and should be free to live in their community.
This led to the creation of Home and Community Based Services. The federal government was all too happy to fund the efforts, with the theory being it’s less expensive to house someone in the community, like at their parents’ home – where most people with developmental disabilities live today.
I’m not sure how much longer community services will be cheaper – in Arizona, at least. This state’s spending has exploded in the last few years, as word spreads that our state’s Medicaid waiver is better than pretty much anywhere else. We don’t have waiting lists; if you qualify, you are immediately eligible to receive services.
Good luck finding those services. There are waiting lists for speech and occupational therapy. Meanwhile, it’s tough to find any kind of doctor who will treat a person with disabilities; they’d rather cure the ailments of typical people than manage a condition that will never “improve.”
And don’t get me started on the shortage of caregivers, the rank-and-file providers whose role is to help people with disabilities lead as fulfilling a life as possible. In many cases, a given client’s state caseworker will approve hundreds of hours of annual paid care. The trick is finding someone willing to provide it. The work is usually part-time, with no benefits, low pay and plenty of challenges.
For years, it’s been a poorly kept secret: Arizona can afford to offer a smorgasbord of services because very few families will actually be able to find the people who can provide those services.
Then the pandemic hit. Unable to send caregivers into homes, the federal government bent a rule and allowed parents of children under 18 to be paid to provide caregiving services for the first time. Suddenly, the hours being used began to rise, and so did the costs. The feds picked up the tab for a while. And then they didn’t. The state had a big decision to make.
Arizona continued to pay parents to be caregivers for their children with developmental disabilities, at a minimum wage rate that could max out at more than $2,000 a month. It sounds like an amazingly benevolent move. And maybe it was – but it’s not likely to end well for hundreds of families.
Cynthia Macluskie was the canary in the coal mine, but no one listened. The metro Phoenix resident is deeply involved in the local autism community (her son Mark is on the spectrum) and sits on one of the state’s independent oversight committees. Let’s just say she’s well-connected.
“The thing that’s been frustrating to me,” she says, “is that during COVID, when [the state] decided to do the paid parent provider program, in several meetings I asked what is the plan because the…money you’re using is a one-time or two-time funding, and then it’s going to disappear and people are going to quit their jobs to stay home and provide this care. So, what happens when there’s no more money?”
And that’s exactly what happened. Stretched to capacity – not just by longtime residents, but families who moved to Arizona specifically to take advantage of the program, some of whom I’ve spoken to over the years – the funding reached crisis levels. For the second year in a row, there’s a multi-million-dollar shortfall. Now the state’s talking about limiting services and capping hours, cost-savings measures that probably should have been implemented a lot sooner. Parents are mad and understandably pushing back. It’s a mess. And it can’t go on.
Which brings me back to my original question: Who deserves to be a paid caregiver? There’s another group called Arizona Mad Moms that believes parents of adults with serious mental illness, or SMI, should also receive compensation for caregiving.
I don’t have an answer here, either. But I understand where they’re coming from.
Because of the way disabilities are defined and services are delivered, the paid parent care provider program doesn’t extend to the mentally ill.
Rachel Streiff is the co-founder of Arizona Mad Moms. She wrote an open letter last year to Arizona lawmakers, which reads, in part:
“Hundreds of millions of Arizona dollars are being overspent on paid parent caregivers and specialty services for individuals with developmental disabilities. Thousands of families relocated to Arizona to reap the benefits of the program gone wild.”
Meanwhile, Streiff continued, “Arizona mothers of adults with SMI are performing the roles of doctor, nurse and security guard without respite or compensation. They are risking their own lives to keep you safe… The calls to our organization are so desperate and frantic that we have been forced to set up our own volunteer crisis team.”
Both people with developmental disabilities and those with serious mental illness were housed for centuries in institutions with terrible conditions. They still face discrimination and endure poor treatment. Until I began reporting this story, I didn’t understand why the families and advocates of the two groups don’t get along. Now I do.
Arizona law specifically excludes people with certain psychiatric conditions from receiving the package of long-term care services that include caregiving.
I spoke at length with Streiff and several other members of Arizona Mad Moms. They admit that it’s going to take a lot more than paying parents as caregivers to make things right. Streiff started her letter with a list of parents killed by seriously mentally ill adult children, followed by parents who’ve sustained injuries.
Again, I’m not here to say whether or not any parent should be paid as a caregiver, but I can tell you with certainty that either way, we are failing these communities in the worst possible ways.
There are parents of children being paid minimum wage or close to it to care for developmentally disabled children with complex medical needs or aggressive behavior. Parents who are exhausted, who still can’t make financial ends meet.
There are parents of adults with serious mental illness who fear for their lives, and their children’s lives. After years of talk about improving the “continuum of care,” there’s been little progress. Thousands of people with SMI are on waiting lists for safe housing. They often live in unsustainable circumstances.
And these are only two vulnerable groups. What about children of aging adults with declining health? Should the government pay them to be caregivers? (In Arizona, in some cases, that does happen.) What about childcare, which is often prohibitively expensive – if available at all?
If we don’t all start asking these questions, someone else is going to answer them for us.
