How would you want to spend your time as you’re receiving end-of-life care, long-term non-terminal care, or assistance in conducting activities of daily living? Most would say that they’d prefer to spend this time receiving care and assistance in their own home, enabling accessibility to loved ones and control over the terms of their treatment rather than being subject to the logistics of an institution like a nursing facility.
People used to believe that living in a facility was the only option for long-term care, but people are increasingly learning and demanding that they receive care in their own homes. With this, an obstacle presents itself: the in-home care staffing shortage.
Throughout 2020, most of the fifteen identified in-home care staffing agencies that serve Oneida County continually disclosed to non-profit Care Coordinators that they were unable to provide services. Some were located outside of Oneida County and stopped servicing the area, some had strict eligibility requirements, and some wouldn’t even add eligible clients to their waiting list because they didn’t have the capacity. One would be lucky to identify a few agencies that would even consider offering limited hours of care in select parts of the county. The service representatives would admit off the record that they were short on staff and unsure of when they would be able to recruit new staff.
The need and the demand for in-home care is apparent, as calls requesting information on this service are easily one of the most common that non-profit Independent Living Centers (ILC) receive. Meanwhile, the elder population is anticipated to double by 2050 (Paraprofessional Healthcare Institute). So how can we combat the staffing shortage? Most obviously, the pay rate needs to be raised well above the minimum wage. People aren’t attracted to these positions because it’s too much work for too little pay. And money isn’t just an issue of practicality and survivability; it’s also an issue of respect. When this vital job gains little monetary reward, it also garners little status and respect from peers, resulting in a diminished sense of self-worth. People need to pay bills, but they also want to feel valued.
One program that has helped combat the in-home care staffing shortage is Medicaid’s Consumer Directed Personal Assistance Program (CDPAP). With CDPAP, an individual needing in-home care (known as a consumer) can hire their own staff member, known as a Personal Assistant (PA). The PA can be whoever the consumer feels comfortable allowing into their home and receiving assistance with intimate activities like bathing, toileting, dressing, etc. Such a PA may be the consumer’s own friend or family member (so long as it’s not a spouse). There’s a stigma around this practice, as people insist that loved ones should want to take care of each other, regardless of compensation. Well, of course they want to, but this isn’t realistic nor practical. Everyone has a life of their own, and it isn’t reasonable to expect loved ones to provide care to the extent that they may need to move homes or give up their full-time job. Many loved ones take on the responsibilities of an informal caregiver, and the emotional toll can become unbearable. Loved ones may accrue an enormous debt paying for respite services, or they may simply give up and push the consumer into a nursing facility.
Allowing people to give up their jobs to take care of loved ones as an unpaid PA – or even paying people too little as a PA, for that matter – can cost the state money in supplemental benefits like unemployment and food stamps. Furthermore, treating people in their own home is far cheaper than treating them in an institutional setting. Most people don’t need 24/7 care and utilizing the client’s home eliminates the institution’s brick-and-mortar costs.
The PA wage must also take into consideration the gas, wear, and tear that the PA’s vehicle may take when transporting consumers to the bank, pharmacy, grocery store, and laundromat, as CDPAP has stopped offering mileage reimbursement. A higher pay would also incentivize PAs to travel to remote areas to assist consumers, as rural residents have an especially hard time finding staff.
With CDPAP, many new people are being attracted to in-home care employment, as they have a personal stake in the situation. They may have never even thought of being a PA, but when they can both have a job, and take care of a loved one, they’ll take it. This incentive combats the PA staffing shortage and allows the consumer to receive treatment on their own terms; with dignity, privacy, and autonomy.
With CDPAP, the consumer is authorized to receive a certain number of hours per week of care. The hours allotted are only what’s been determined as absolutely necessary to care for the consumer and assist them with activities of daily living. During this time, the consumer is receiving higher quality care than they would in a facility. Nursing home residents report waiting extended periods of time to have their bandages changed, to be bathed, etc. Rather than being one of many neglected patients in an institution, consumers will have the undivided attention of a PA in their home.
An individual’s prognosis improves in their own home as well. An anonymous spouse called an ILC regarding her husband, who had dementia and was supposed to be temporarily assisted in a nursing facility. What many find is that once someone is admitted into such a facility, it can be hard to get them out. Housing and in-home care must be arranged before discharge, and yet certain arrangements cannot be made until after the resident is discharged, putting the transition at a standstill. Leaving against medical advice (AMA) may prompt the insurance provider to make the resident liable for part or the whole expense of their stay at the facility as well as liable for subsequent costs related to medical complications from having left AMA. The anonymous caller’s husband became stuck in an unfamiliar environment without sufficient interaction with loved ones, and his condition rapidly declined. Many know that mental and emotional health can play a role in physical health, which is why it’s so important to allow people to have direction over their care. One study compared high levels of anxiety and depression to smoking cigarettes, as these conditions increase the chances of stroke, arthritis, heart complications, and high blood pressure anywhere from 50-87% (Aoife O’Donovan, Ph.D., of the Department of Psychiatry at the University of California).
The benefits of enabling someone to receive care at home in a private space is especially apparent throughout the pandemic, as institutional settings have become hotbeds for the virus. After the pandemic, contagious illnesses will continue to compromise everyone in these congregate settings, leading to additional healthcare costs.
Increasing the wage for PAs also combats the wage gap plaguing women and people of color. At home care workers are estimated at 89 percent female and 46 percent African American or Latinx (Paraprofessional Healthcare Institute).
Investing in homecare is a win-win for everyone involved. It makes both consumers and caregivers happier and healthier, it’s cheaper for the government, and it puts money back into the economy with more jobs and higher incomes. Although it may not apply to someone now, most of us will have health complications at some point in our life. It’s the ethical thing to do, and it’s something we would all want for ourselves.
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