Why Everybody Needs to Care About Community Home-Care and a Living Wage for Aides

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. 

Coming from a Dark Place; Wish I Had Seat Elevation

As my printer is permanently broken, getting my papers together for this year's home care re-certification had additional challenges.  One thing I really miss with my present wheelchair is the feature of seat elevation.  It would cost m about $1100 cash out of pocket to add on this feature that I found so useful on my old wheelchair.  At the time I got the first motorized wheelchair, the MDA gave a $2000 grant to each client for wheelchair modifications.  Due to budget cuts, they no longer give this.  So one thing led to another:  even if my printer were working, it would have been too ominous a task to copy anywhere from 70-80 pages of documents.  And, without seat elevation, it's impossible to make copies at a public copy machine.  So I called Staples near my home and explained that I am in a wheelchair and needed to make one copy each of about 75 pages and the woman at Staples said "great.  Just drop it off and we can do it for you".  Such is the provision of the ADA: when self-service is not accessible, the PWD gets full service at self-service rates.  Well, that holds true if I show up myself.  But when an able-bodied aide shows up, she is directed to the self-service copier.  That task is not in the job description of an aide, so I was so grateful that Ellita stood at the copy machine and made the copies for me.  Otherwise, we would have had to make another trip with me [bundled up for the freezing cold] and tell the counter person I need assistance.  I am saving for a new printer and this time it will be wireless, so that I can also print from my iPad.  And, I still miss seat elevation on my wheelchair.

Beginning early April, I will be starting a course in Plant-based Nutrition through e-Cornell.  There will be 3 separate courses of two weeks each and at the end I will get a certificate.  I don't know what exactly I will do with the knowledge in addition to using it to better myself, but I look forward to somehow using it to help others, either by counseling, blogging or writing articles.

A couple of weeks ago, I went for my quarterly visit to the ALS clinic.  For some reason, each team member was trying to get me to sign on for home physical therapy again.  As I told about the experience in this blog, I had a therapist visiting from VNS [Visiting Nurse Service] and she worked me so aggressively that a couple of months after starting, my left knee began to hurt badly.  This was a year ago -- in March of 2013.  I had to stop PT and see an orthopedic doctor who visited the office of my primary doctor once a month.  To my dismay, I only saw a PA [physician's assistant] who gave me a prescription for physical therapy.  This time, I attended outpatient PT a couple of blocks away from the house.  I attended PT all through that summer and at times the pain was insurmountable.  When I had run out of Tramadol [pain reliever] and there were no refills for the medication, I called my primary doctor who never returned my calls.  So I made an appointment with the orthopedist at his own office and saw two young men who identified themselves as Medical Assistants.  They refused to let me see the orthopedic doctor and also refused to let me have any prescription painkillers.  I took over-the-counter painkillers until I realized I could live with the pain, but now had another sensation : a "pins-and-needles" feeling on the ride side of the left knee. see archive

So my neurologist prescribed Lyrica for me in the fall and said I seemed to have a neuropathy. He referred me to a rheumatologist. In the meantime, Lyrica made me even more sleepy than I usually am.  Moreover, as I wrote about in this blog, [see archive] I took an antihistamine one morning for my year-round allergies and I went into such a deep sleep that I was cognitively affected for a good part of a weekend.  I was panicky because I thought I was going into dementia.  When I woke up and realized I could think semi-straight again, I went on the internet and found out that antihistamines and Zyrtec don't mix.  Finally, I went to the rheumatologist and he determined that I didn't have neuropathy and told me to get off the Zyrtec, which I gradually did.

Anyway, the thought of going back to PT was not sitting well with me and this put me at odds with the members of my ALS team.  And to make matters worse and even more confusing is the question of whether home health aides are willing and even permitted to exercise me.  One of my aides works for many years for Partners in Care, which is the home-care arm of the Visiting Nurse Service [VNS], the company through which I get home PT.  In her in-service training, my aide has been told that she SHOULD NOT exercise me because of liability issues.  Then the VNS PT's come to my home and tell me that, in between sessions, and after they leave, my aides need to do ROM [range-of-motion] exercises with me.  Since Medicare limits their time with me, eventually they leave and expect that the aides will continue the work, which they don't.  When I was at clinic, the team members insisted that my aides have to exercise me.  So do I "yes" them to death and accept the PT, knowing that it will not work out the way they would like it to?  Or do I keep talking honestly and have the team think I am being uncooperative and difficult?  And the other question is:  do I have to go through a parade of people coming through my apartment to "intake" my case and then trying to push other services on me like occupational therapy [OT] with the goal of "making me more independent"  [LOL], and speech therapy [an even bigger LOL]?  Really! that is what they did the last time, and I had a procession of VNS people coming every day into my apartment full of machines and other clutter, including cardboard boxes.  

I have been in a very dark place this winter.  I cannot seem to conquer the clutter without people to help me move stuff.  Any able-bodied friends I had,  have moved on to other things; some are able and willing to do some kinds of things but not others[understandably].  And additionally, the closing of my basement access for a full month as well as the problem with my portable shower unit gave me a feeling of dependence and lack of control that was worse than ever.  For a while, I could neither take a shower nor get out of the building to get my hair washed at the salon.  I had a can of dry shampoo in the apartment for when my head got too stinky, but that is never the same as a shampoo.  There is a way to get down steps with a manual wheelchair, as my brother-in-law does every Thanksgiving to get me to the family dinner [their house is 6 steps up], but I have nobody strong enough to do that in my building, and then to wheel me around in the snow anyway.  While I often relish quiet time to meditate, get creative and read, and not have to worry about interacting with a mechanical voice and people who are uncomfortable with my disease,  I still get painfully lonesome.  And yet, my apartment is so visitor-unfriendly that I am ashamed to have people see it anyway. Spring is coming and I feel the dark place get a little less dark.

Update August 30, 2010-- Bye-Bye Summer

Well summer is at an end.  I am grateful for the three outings I had this summer, which was really a hot one.  At the beginning of the summer, Louise invited me to the annual barbecue at her church, St. Luke's, in Forest Hills, on a beautiful summer evening.  In July, Judy came out and we took Access-a-Ride to the Rockaway boardwalk. It was pretty empty on a Tuesday, and Rockaway is still very depressed, with a lot of boarded-up businesses right next to the beach on Beach 116th Street.  It reminded me of my home town -- Long Beach -- before it got the HUD grant which facilitated its revival.  There was an SRO right off the beach and therefore some shady characters on the boardwalk.  Originally, we were going to go to Brighton and have lunch in one of the Russian restaurants on that boardwalk, but I thought it would be too far, and there is a city bus from Rockaway to my neighborhood in case we had any trouble with Access-a-Ride. But Access-a-Ride was impeccably on time, and I'd forgotten what a long ride it was from my house to Rockaway, along Cross Bay Blvd and through a long stretch of nature preserve.  I wish I had gone with Judy's original suggestion of Brighton, which would have taken the same amount of time over parkway.   Oh well. But it was hot and the sun was out, and I knew it would be my only opportunity to see the ocean this year, so I was grateful to be there. And Judy is great for having gone with me.

My third and last outing this summer was in mid-August. Jenny Vidoni, who works at MDA in Manhattan and coordinates the MDA/ALS efforts in NYC, came out to visit.  I know Jenny from our support group at All Souls Church, which she co-facilitates.  I was just so grateful that she came out because Manhattanites hate to come to the outer boroughs.  We walked to Flushing Meadows Park, and visited the Zoo.  We had a great day.  Jenny is used to dealing with all kinds of disabilities, so it was fun, and extremely comfortable.

I was invited to be part of the Consumer Board of Concepts of Independence, Inc.  Concepts is the company that runs my Consumer Directed Personal Assistant Program [CD-PAP]  This is something that disabilities advocates fought for, along with the Americans with Disabilities Act.  The CD-PAP allows me to remain in my home and select my own aides [personal assistants], rather than depend on an agency.  Those of you readers who have been following me since the Caring Bridge page I had, know what a triumph it was when I got onto the Concepts program.  The agency I worked with before, through which I met 3 of the aides I have now,  was less than accommodating, sending all kinds of aides to me who were less than satisfactory.  I was robbed of a brand-new digital camera, and plenty of cash.  Some of them were so scary, I was afraid to go to sleep at night.  Eventually, I got a team of aides whom I could trust.  But when any of them called sick, the agency sent strange aides instead of ones I already knew.  It's very difficult to keep training strangers about what to do, especially since I can't speak.  And some of them were intimidated, frightened, or just plain lazy.  I had an assortment of ladies who I am sure were nice people, but they resented being sent to such a "difficult case" and took their perceived misfortune out on me, or just fell asleep, snoring, in my big comfortable chair.  My complaints fell on deaf ears, with the agency supervisor often telling me "I have a hard time finding aides who will go to you at all".  That didn't make me feel very good, and to top it off, I had a nurse who would come once a week and tell me "I have a hard time finding an agency who will take your case on a long-term basis, because your case is so difficult", which made me feel even worse. The day I switched to Concepts was a happy day.