You know, families dealing with a loved one with significant medical challenges have enough on their plates. First comes navigating the healthcare system for diagnoses and treatment, then comes the nightmare of trying to pay for said diagnoses and treatment and medicine. And let’s not, please, minimize the emotional toll of simply having a loved one with a significant medical challenge. The “last thing you need” does not even begin to describe the situation when the home health caregiver turns out to be a criminal. In my area during the past year, one family had $23,000 stolen by the caregiver, a client was sexually molested, and, most recently, a 78-year old man was murdered, allegedly stabbed to death by his home health caregiver before the house was set on fire in an attempt to cover up the murder.
Some 12 million Americans have their medical care met at least in part by home health workers, according to the National Association for Hospice and Home Health. That care could be anything from companion care to skilled nursing. In my case, I have had a home health professional at least part-time for the past 9 years to dress, shower, feed, toilet, and administer medications while Suzanne is at work. And yes, Suzanne has to work since she only gets health insurance in this country through an employer. Plus, she frankly is not physically capable of moving my body around all day, every day. I have been blessed with wonderful, committed and truly caring people who have given their hearts as well as their time to their work with me. One person came to us originally through an agency and two we found on the internet. Given what we have learned about this industry, to what extent is our, or anyone’s, good experiences attributable to blind luck?
The relationship between a home health caregiver, the client and the client’s family is incredibly difficult to navigate yet vital for success. The client, me in this example, could hardly be in a more vulnerable position. I am naked seemingly half the day which, honestly, given all the medical attention I have had, I feel like half of Chicago has seen me naked anyway. But still. Clients like me trust the caregiver to not drop us during transfers, give us the right medicines, be safe drivers, handle our credit cards at the drugstore, order the right food, communicate effectively with family, and more. Things can, and do, go wrong due to honest mistakes that we hopefully laugh about later. Case in point, my caregiver was slightly grossed out cleaning my ears one day and made a joke about bugs having maybe set up house in there to cover her feelings. I didn’t know her well enough to know that was a joke and, unbeknownst to her, we had been to a wedding on a farm over the weekend so I emailed Suzanne that I might have mites. Suzanne was understandably concerned and called the caregiver immediately, which is when I heard it was a joke and CRACKED UP, which made the caregiver start laughing. Suzanne’s response was considerably less amused thinking we were pranking her and our laughing was decidedly unhelpful.
As uncomfortable as that was, matters of communication can always be worked out, even with someone as bad at it as I am. Real, and serious, problems happen all too frequently in an industry where caregivers have too much responsibility, too little education, with few safeguards, for too little pay. Agencies may do background checks but often pay $10-11 per hour, so good caregivers with experience are most often independent. Independents may or may not be legally authorized to work in the country and have educational and work backgrounds that are sometimes difficult or impossible to verify. Even a Certified Nursing Assistant certificate is a low standard of competency, requiring as little as 4 weeks training post high school diploma or GED. And problems do not always begin with the caregiver. There are far too many reports of caregivers becoming victims of sexual harassment and coercion, along with consensual affairs between caregivers and spouses of clients, sometimes even within the client’s range of vision or hearing.
I believe that this industry needs better oversight and regulation. Not more, necessarily, but better. Agencies labor under reporting requirements and work rules that are onerous and make no sense for the patient. An example is that a CNA is not allowed to give food through a feeding tube, that must be done by a Registered Nurse. RNs are too expensive for most people already struggling with medical bills and likely job loss or restriction, and tube feedings are so easy literal 10-year olds can do it reliably.
Wages for home health care workers must be raised. There is no rational justification for paying these people less than your local barista or fry-salter. In exchange, there should be a better system of standards qualification and employment verification than what we have.
The fly in this particular ointment is a big one. Wages are low because clients generally have to pay for these services out-of-pocket and we simply cannot afford to pay the good caregivers anything close to what their services are worth. So our lovely capitalist system values home health caregivers at as little as $10/hour and the industry attracts some illegals and low-lifes.  In theory, Medicare benefits include home health care for people who are housebound and require specific skilled services, but accessing those benefits has historically been difficult because of our bastardized public-private health care industry. Private agencies are supposed to provide the care, but they will not hire people when the government may take 6-9 months to reimburse for services performed, so the agencies outright lie to patients who ask for home health care under their Medicare benefits. The past two years has seen a further decline. According to the Center for Medicare Advocacy, approvals have dropped to half the rate as in 2016.
As we move into a presidential primary season where “Medicare for All” is discussed it is important to have candidates define exactly what services they envision being covered by the plan, who provides the service and, of course, how the plan is paid for. My vote so far goes to the plan put forward by Representative Pramila Jayapar, Her plan covers home health services as a means to keep people out of institutions, keep family members from injuring themselves and to keep family members in the workforce. Check it out. It is time America had the best healthcare in the world.