What John Oliver Got Right (and Missed) About Long-Term Care

On April 11, 2021, “Last Week Tonight With John Oliver” featured long-term care as its main story. In case you haven’t seen the show, “Last Week Tonight” is a comedy news program that covers current events using humor and satire. Each episode also highlights one important topic that has not been given enough attention by major news networks. Although the show airs on HBO, the main story is posted on YouTube every week. So before we go further, watch the video and you’ll learn a lot about an issue many people with disabilities have been trying to raise awareness about for years.

As a person with cerebral palsy who has needed personal care assistants for my entire adult life, it was amazing to see the struggles I deal with daily finally being addressed on a popular TV show. For too long, issues facing people with disabilities and seniors have been ignored by the mainstream media — and this discussion is particularly important right now in light of the national debate over President Biden’s infrastructure plan. I will admit, I hadn’t previously thought of caregiving as being part of infrastructure, but as the video illustrates, a strong investment in home and community-based services could transform the lives of people with disabilities and our caregivers.

“Last Week Tonight” host John Oliver spent most of the episode addressing for-profit nursing homes and the many instances of abuse and neglect that have made the news. It’s worth mentioning here that more than 174,000 nursing home residents and staff have died of COVID-19 — 34% of all deaths. And as the scandal involving New York Governor Andrew Cuomo covering up nursing home deaths suggests, that number is likely much higher. Nursing homes became the most dangerous places to be during the pandemic because of the existing poor conditions there and the failure of owners and managers to implement proper staff training and provide quality PPE to workers.

Oliver also did an excellent job addressing the lower reimbursement rates for nursing home residents whose care is funded by Medicaid rather than Medicare. However, he failed to mention the fact that no private insurance companies cover either nursing homes or long-term home care. If you or a loved one needs long-term care, your choices are paying out of pocket until you bankrupt yourself and can qualify for Medicaid, or being cared for by unpaid family members. There are creative legal strategies to qualify for Medicaid without being poor, and I recommend looking into them, but in general, it’s complicated and difficult for middle-class families to afford long-term care while remaining financially solvent.

Toward the end of the episode, Oliver shifts away from discussing nursing homes and assisted living and discusses the benefits of home and community-based services. Importantly, he points out that nearly 90% of people say they would rather receive care at home than in a nursing home. But unfortunately, many people end up in nursing homes because although all states must pay for nursing homes under Medicaid, in-home care is funded by optional waivers.

States can design their own waivers and decide how much to budget for them, which means there are often more people in need than the budget will cover. This results in years-long waiting lists and people ending up in nursing homes even though they wanted in-home care. Many people with disabilities can’t move to be near loved ones because they would end up on a waiting list — and since programs vary by state and aren’t connected to each other, moving almost always leads to a months-long gap in services, even if both states have good programs.

Although I’m thrilled that Oliver addressed the problems with the long-term care system, he failed to mention a key economic benefit of prioritizing home and community-based services — they are less expensive. Studies show that overall, it costs less to provide disabled and elderly people with services in their home rather than in a nursing home. And given that nine out of 10 people will choose home care if it’s available, in the long run, Biden’s infrastructure plan translates into quite a bit of cost savings for federal and state governments. The infrastructure bill would also fund home and community-based services federally, so states wouldn’t have to absorb the cost. This would give states even more incentive to shift Medicaid recipients out of nursing homes, where the state is partially responsible for the cost, and back to their homes and communities.

Although the humor in the episode was generally spot-on, Oliver made a poorly-informed joke about investigating home care agencies that implied abuse wasn’t likely to be a problem. Unfortunately, it already is. Home care agencies usually pay workers only half of what they charge clients, leading to appallingly low wages. In many areas, low-skilled jobs pay more than caring for elderly and disabled people with complex needs. Due to the low wages, many home care agencies will hire just about anyone, and don’t carefully screen applicants. If abuse is reported, they often simply fire the worker, leaving them free to get a job at another agency and continue the same behavior.

Ask people you know who have a disability or an elderly relative about their experiences with home care agencies and I bet you’ll get an earful. It’s common for home care agencies to send workers who aren’t trained in or capable of doing certain basic tasks like lifting/transfers, who sit around playing on their phones, show up late, are afraid of dogs, and are generally poorly suited to the job and the clients they are assigned to support. And home care agencies often fail to provide consistency for clients; you don’t always know if the same person will be coming to your house, which makes using a home care agency not feasible if you need any type of specialized care. Some agencies limit which tasks their workers can perform and won’t allow workers to drive clients, so those who depend on agencies typically live very restricted lives.

Luckily, there is a better alternative to home care agencies: self-directed care, also known as consumer-directed care. With self-directed care, the person with a disability (or a family member authorized to act on their behalf) chooses and manages their own caregivers. They can hire family members or friends, or find workers who are a good match for the position rather than relying on an agency to send someone. Once you have found a caregiver, the state does a background check and enrolls them into a specialized payroll system known as a fiscal intermediary. This arrangement cuts out the middleman and allows for higher wages at less expense to the state. Thanks to consumer-directed care, I’m able to live in my own home, hire qualified caregivers and train them how to meet my specific needs, and even road trip around the country — things that would never be possible if I relied on nursing home or agency care.

Most states have Medicaid consumer-directed care programs (you can find a list here) but in many cases, they have waiting lists, pay low wages, and/or don’t provide enough hours of care for people with more complex needs. Better funding via the infrastructure bill would help address these problems and allow consumer-directed programs to pay higher wages and provide comprehensive services to more people.

All people with disabilities and seniors should have access to quality long-term care and be free to live their lives as they choose. Let’s use “Last Week Tonight With John Oliver” to start a national conversation about how we are failing seniors and people with disabilities, and the simple, cost-effective ways we can solve these problems to ensure a high quality of life for everyone. Thank you, John Oliver, for showing the world that yes, caregiving is infrastructure, and valuing it will help us build back a better country for everyone.