Shortage of Home Caregivers Is a Nightmare for Many Disabled People

The demand for home care is on the rise, in large part because the number of Americans age 85 and older will more than double over the next few decades. Researchers project that by 2026, an additional one million home caregivers will be needed. This is worrisome, because there is already a dire shortage of home caregivers, which is putting would-be clients in a bind and even forcing some young people with disabilities to live in institutions in order to receive basic assistance with daily tasks.

Why are there so many unfilled positions in caregiving?

Unfortunately, there are not nearly enough people interested in this profession. Home care jobs tend to be very low-paying. Currently, the median hourly rate for home caregivers is $10.99, which is comparable to earnings for food service and retail jobs. Moreover, caregivers have inconsistent work schedules (many positions are only part-time, which means workers don’t qualify for benefits), and lack opportunities for advancement. Caregiving also comes with a risk of injury that is higher than that of mining (1).

Besides the poor pay, instability, lack of advancement opportunities, and dangers of the job, many people are turned away from caretaking because of the high levels of responsibility it entails. As Matt Hobbs of the disability nonprofit Boundless explained to The Columbus Dispatch, “You make a mistake at McDonald’s, and someone gets pickles on their burger. Make a mistake working in our field, and there are severe consequences. There are investigations; the police could be called” (2).

Likewise, Carla Friese, who has quadriplegia, told the Star Tribune that, “It’s difficult to find quality staff when they can make the same pay flipping burgers at McDonald’s and do a lot less work” (3).

Finally, restrictions on immigration likely have an impact on the home caregiver shortage. PHI, a direct care workforce advocacy group, told Forbes that about one quarter of caretakers are immigrants.

Considering all of these factors, it is perhaps not surprising that annual turnover rates at home care agencies are around 60% (1).

How Has This Shortage Impacted People with Disabilities and Their Families?

Kenna Robinett is the guardian for her twin nephews, both of whom have severe autism. The agency hired to care for them told her multiple times that she needed to stop meddling. In response, Robinett told The Columbus Dispatch, “I started tracking only the things that weren’t related to me or my opinions.”

Still, the issues were numerous and seriously concerning. One day, her nephews’ school called her because one of the boys had arrived with feces on his hands. Another day, while Robinett was at the airport, she received a message that as of 3pm that same day, there would be no one available to care for her nephews because the agency was shutting down.

The turnover in caretakers isn’t just inconvenient, it can also be emotionally traumatic for clients. As Patty Lyons, whose 15-year-old daughter Adriana has cerebral palsy, chronic lung disease, and epilepsy explains to The Columbus Dispatch, “This is deeply personal, intimate care. She has a G-tube (which delivers food to the stomach), takes 13 different medications. Essentially, she’s nonverbal. She has to be left alone with a provider while I’m at work.”

Adriana used to have a private-duty nurse, but new Medicaid policies made her ineligible for nursing services (under the reasoning that a less costly personal care provider could fulfill her needs). It took Lyons months to find a suitable caretaker (2).

What Happens to People Who Can’t Find Home Caregivers?

Korrie Johnson is a 25-year-old from Cambridge, Minnesota. She has limited mobility due to cerebral palsy, but is otherwise healthy and mentally competent. Nevertheless, she has spent the past year living in a nursing home. Her mother used to care for her, but she was injured in a serious car crash and is no longer able to.

The other residents at Johnson’s nursing home have dementia and other debilitating conditions; in the year she’s been there, many of her new friends have died of old age. As Johnson told the Star Tribune, “This is no place for someone my age. I love these people, but I feel like I’m missing out on life every day that I’m stuck here.”

Johnson is not alone in her predicament (to put it mildly). Throughout Minnesota, about 1,500 people under the age of 65 live in nursing homes under the state’s Medicaid program, and hundreds more languish at assisted living centers for seniors.

Fixing the Home Care Shortage Crisis: What Can Be Done?

Unnecessary institutionalization of people with disabilities is a civil rights issue, and the relevant state and county agencies may be vulnerable to legal action.

The 1999 Supreme Court “Olmstead” ruling required states to ensure their residents receive care in the “most integrated setting appropriate to their needs.”

Today, advocates argue that trapping people with disabilities in nursing homes and assisted living facilities may violate their civil rights laid out in the Olmstead ruling, because many of these individuals could live at home and be productive members of society if only they received the necessary support and accommodations. Working to get people out of institutions is also an economic issue; nursing home care tends to cost taxpayers more than home care (3).

It is important to recognize that a major part of helping people get out of institutions and find suitable homecare is making home caretaking a more appealing profession. Political reform may be a critical part of this, and could involve changing Medicaid rules so that caregivers are better compensated and have better opportunities. Worker cooperatives may also be able to help; being a member of a cooperative can mean increased training, more benefits, and more consistent schedules (1).

On a societal level, we need to acknowledge that home caretakers do incredibly important work. Those who commit to these jobs and do them well deserve not only job security, but also our respect.  


  1. Forbes – The Shortage of Home Care Workers: Worse Than You Think
  2. The Columbus Dispatch – Crisis in care: Lack of quality caregivers, constant turnover tough on disabled, families
  3. Star Tribune – Shortage of home health workers forcing young Minnesotans with disabilities into institutions

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