The short answer is that eventually, either you or your spouse or your parent or even your child, might find yourself or themselves in a position of no longer being able to self-care and self-manage. It's nice that more and more children are getting to coexist with grandparents or even great-grandparents, due to longer life expectancy -- I had a grandmother I never met because she died seven years before I was born and the other three grandparents died when I was in my late teens. I wish my grandparents were around when I was a little more mature and valued their histories and stories. But, along with the good fortune of older relatives living longer, comes the burden of their frailty and the need to care for them. Also, children with disabilities and serious illnesses can live longer than before, but often also need help. Especially children with neuromuscular diseases and diseases like Cystic Fibrosis and Cerebral Palsy, who formerly did not live into adulthood, now live many more years and continue to be valuable to their communities and the familiees. Ditto for adults diagnosed with formerly life-threatening diseases like AIDS and forms of cancer who might have died within months a decade ago, but are surviving longer. The need for community-based care will only increase; it is costly and impractical to expect family members to give up their lives to care for weak and disabled loved ones.
On February 13, people with disabilities [PWDs] traveled to Albany to meet with their respective assembly-members and state senators to lobby for more funding for community-based care. This was a tremendous sacrifice for the PWDs who went for a whole day in the freezing winter cold. Those who could not go to Albany -- like me -- will meet with our respective legislators during winter recess, here in their NYC offices. Like those who went to Albany, we will tell our story and present a case for higher pay for home health aides [HHAs]. A week later, PWDs attended a hearing in Manhattan about funding for home care. I am lucky to live in a district with legislators who are in favor of paying home health care workers a living wage. When I meet with them later in the month, I will be preaching to the choir, but many of my counterparts will have to do a harder sell.
So we have an increasing need for home healthcare workers. In fact, the field of community healthcare is expected to be one of the fastest-growing career categories for the 21st century. But what can a home health aide or home attendant expect to be paid? At present, the per-hour rate for a home attendant hovers around $11 an hour. And it's been at this level for about a decade. Has the price of groceries, fuel, utilities, rent or transportation stayed the same? Of course not. This means s/he can hope to make about $22,000 annually IF [AND ONLY IF] s/he works 40 hours a week [many HHAs work for agencies that give a lot less hours]. Lately, patients and their families -- especially in cities with high costs of living like New York and San Francisco -- have found it difficult or impossible to find good and reliable HHAs. The lower the pay, the less seriously an employee treats a job, and the less we can expect in the way of enthusiasm, skills and reliability. Indeed, many consumers [patients] hire a HHA, take the time to train him/her, only to have the HHA walk out with no notice.
So, you should care about making this line of work more attractive. And what's in it for the HHA besides being better able to pay bills and support her family? In the case of Consumer-Directed care [CD-PaP], HHAs do so much more than wipe butts [sorry, but I have actually heard ignoramuses refer to this as the job of an HHA]. Depending upon the consumer and his condition, it's a way to learn skills that will look great on a resume, especially for HHAs who want to go further in healthcare [many HHAs go on to become Certified Nursing Assistants {CNAs], Licensed Practical Nurses [LPNs] and even RNs and get jobs in hospitals or agencies]. For instance, my aides know how to transfer me, and use a Hoyer Lift and ventilator. They also do wound care and other nursing functions. In my case, they have become very knowledgeable about neuro-muscular diseases, feeding tubes and physical therap- and range-of-motion exercises.
Okay, so let's say we agree that HHAs must be paid more. Well, the powers-that-be do not agree. They need to be convinced to fund Medicaid and Medicare to pay this increase. Unless you have been living under a rock, you know that here in the United States we have a new administration, which includes a new president, a majority Republican Congress, and very conservative cabinet members, many of whom are very wealthy [billionaires, even]. Without getting too political, the present government and many legislators are not fans of increased funding to pay for community care. They think $11/hour is a fair wage for someone entrusted with the health and safety of YOUR loved one. Let me tell you in more detail than above, what happens with a worker who doesn't earn enough money to pay rent and support herself and her family : they have less respect for the job, may leave with no notice [often after investing a lot of time and patience training], AND may find it necessary to work another [or multiple other] jobs. The latter situation can endanger a patient - the HHA may be so fatigued s/he falls asleep on the job and therefore loses sight of a child or older patient with dementia, causing wandering -- or worse. A fatigued aide might even lose grip on a patient during a transfer and cause a fall. Inattention or lack of focus can be dangerous. Also, at such a low salary, consumers have to settle for a less-desirable and lower-qualified aide pool. Instead of getting an aide who enjoys the work and chooses to do it and learn skills, we risk getting someone who can't get anything better, and might resent what they look at as desperation. I am very lucky to have aides who have been working with me anywhere from 9-11 years, and are eager to learn any skills necessary. I am also lucky to have an assembly member and state senator who are advocates of community care and a living wage for home-care workers. When I meet with them later this month, I will be preaching to the choir.
In order for a working person to feel valued, he must be compensated appropriately. Furthermore, we must fund community care so people can stay in their homes and in the communities where they feel comfortable with their neighbors, and where many have resided for decades. In the coming years, we need funding for an increasing need for dedicated and contented home health care workers. This is one of those things I hope you will never need, but you may one day. Even some of the highest salaries cannot support decent home health care out-of-pocket, especially 24/7. I was told when I first received my diagnosis and was discussing with an acquaintance my concern about a future need for round-the-clock care: "Just get some illegal alien who will be happy for $200 a month and a pull-out couch to sleep on"........I found out this was not a good idea.
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