Category Archives: Disability and Elderly Issues

USED TO BE ONLY THE GOP TRIED TO DESTROY MEDICARE

[MY FEBRUARY 2010 COLUMN FROM VOICES OF CENTRAL PENNSYLVANIA]
From Where I Sit

“…Dr. [Margaret] Pfanstiehl…said her goal was to engage the sight-deprived to‘live a 20/20 existence without 20/20 vision.’”

                            –from The Washington Post.

Dr. Pfanstiehl, mourned last month in a Maryland ceremony, was blind and promoted audio description technology to the point where a blind patron can hear audio description of dance.

From where I sit on my $5,000 power chair, two issues come to mind immediately. First, President Obama, the man I supported to be president, plans to reduce the Medicare budget by nearly half a trillion dollars. These cuts, intended to help pay for health care reform, have come on top of procedures that hurt me and others who are elderly or disabled. The argument is that current and future cuts will reduce “fraud
and abuse.” Attorney General Eric H. Holder, Jr.’s fraud and abuse prosecutions are notable for their relative insignificance.

The second issue that comes to mind is when elderly and disabled voters are organized,
they constitute an effective voting bloc. As I write this column in Addison Court in State College, I note that Addison Court has about 90 residents who are 55 or older or who have disabilities or impairments.

Most of us are registered and vote even in low-turnout elections. Addison Court now has a tradition of iinviting candidates to inform our residents about the issues. To date, residents (eating
Elaine Mede-Wilgusr donated food from Webster’s Café) have heard R e p r e s e n t a t i v e
Glenn (GW) Thompson, his challenger Mark C. McCracken (currently a Clearfield County commissioner),
Assemblyman Scott Conklin, State College Mayor Elizabeth Goreham, and four State
College Borough Council candidates representing both major parties.

When George Bush was president, he attacked Medicare, creating barriers that
made it more difficult for eligible citizens to obtain medical oxygen for homecare,
wheelchairs, power chairs and scooters.

To take me as an example, in March 2008 a power chair was prescribed for me after (in-patient
hospitalization at Health South). I received a thorough evaluation from physical and
occupational therapy. My physician, Dr Colin McCaul, a specialist in rehabilitation,
prescribed the chair because he said it would be useful for me to have more support
for my right arm, helping to avoid surgery.

It would also be useful teaching my left arm how to perform functions previously
done by my right. The chair’s controls are on my left causing much trouble
before I finally learned how to drive lefthanded.

Medicare required that I go through an hour-and-a-half test with a rehabilitation
specialist. After passing the test, I saw Dr. McCaul in the hallway. The rehabilitation specialist
emphasized the importance of the doctor scheduling a one-on-one appointment devoted strictly to why I need a power chair and to be followed by a paper prescription with the magic words on top “after a one-on-one appointment.”
Since I had seen Dr. McCaul immediately before the test, he said it wasn’t necessary
to meet again. He would take care of it.  Medicare, which has been consistently negligent in explaining the rules to physicians rejected the prescription and would not pay. The prescription was not written in keeping with Medicare regulations. [How I obtained payment from an agency other than Medicare
 is a story for another time.]

When Obama became president I thought he would reverse those policies. He has
made things worse. Especially distressing is that while Obama has been busy with health
care reform in which Medicare was a significant factor, he had not named a director of
Medicare, the largest health insurance company in the United States. Assistive technology
(which gets me from bed to the bathroom reliably) generally helps the disabled
avoid assistive living (which costs Medicare more than $40,000 extra per person
per year than independent living. Also, independent living
allows a greater sense of independence and helping to improve morale.

I said in my last column that I would discuss John Wayne’s comment that after
cancer surgery he did not feel sorry forhimself, despite the temptation. Wayne
proved it by getting back to work, filming a movie only two weeks after surgery.
For those of us who are disabled, not feeling sorry means having the equipment to
get a job, equipment suc as that listed above.

Assistive technology for the blind especially have resulted in
very exciting developments Disgracefully, technology that is very
useful to help individuals who are blind gain indepence
is not paid by Medicare. We also need technology for those who cannot
hear—only some of which is paid for, including controversial cochlear implants.

The most effective message to the Democratic Party is the creation of a bloc
within the party that will vote strictly on disability and aged concerns—a bloc which
will flirt with the Republicans if it does any good. [It should go without saying that this
bloc would include disabled veterans, but all too often veterans are neglected even
when intentions are best.]

—Joel Solkoff, author of “The Politics of
Food.” Contact him at [email protected]

Firefighter Love: From Addison Court Report February, 2009

[Note: Addison Court is an independent living facility in Downtown State College for citizens aged 55 and older and individuals with disabilities. Many of its residents are aged 70, 80, and 90. Last year we had problems with faulty fire alarms which demonstrted residents did not know what to do when the alarm went off at 1:30 in the morning. The residents formed a fire safety committee with wardens to provide assistance on each of the building’s 8 floors. We were trained by Steve Bair, Council of Governments Director of the Office of Fire Administration. A major part of the training consisted of what to do when the excellent Alpha Company, four blocks away, comes to help us in the event of fire. Alpha’s Chief is Keith Yocum]

Hug a Firefighter Two Days After Valentine’s
at Noon or 6:30; Get a Bowl of Chili

This invitation has 6 parts (some of which the author did not complete because he is too wordy):

  • Details of the Tuesday February 16th event at the Addison Court social hall. There will be two sittings; Noon and 6:30 PM. Feel free to go to one or the other and fill out the signup sheet. Be there or be square.
  • Why hug a firefighter (male or female) from the Alpha Fire Company’s Main Office on Beaver and Atherton. [No question mark required.]
  • What to do in the case of a fire.
  • Come spring you can bring your grandchildren to the fire house and see the pretty trucks. When 83 year-old Lillian Hutchison swings down the fire pole I want to take a photograph.
  • Participation as a fire warden—the Arnold Addison Court Fire Safety Committee, Carol Ames co-chair, needs you to volunteer as a part time FIRE WARDEN so we can have back up wardens in case your floor’s regular fire warden decides to spend two days gambling in Harrisburg. Please give Sherry your name and I will get back to you.
  • As my maternal grandmother once told me (and she was a wild one) when it comes to hugging, be moderate.

Details:

  • One hundred bowls of Webster’s Bookstore and Café’s famous vegetarian chili will be served at the noon and 6:30 sittings.
  • That chili will be served to our frontline firefighters, you, Steve Bair, Council of Governments Director of the Office of Fire Administration, Alpha Chief Keith Yocum, Alpha’s Jackie Richardson, and government officials.
  • Residents are asked to provide additional food and cash donations.

In the event of a fire:

  1. Call 911 and report (even if you are not sure if someone else has reported). Addison Court is a safe building. It has an excellent sprinkler system. The biggest danger to residents is if we panic and do not rely on our fire wardens and most importantly the men and women of Alpha Fire Company to come and tell us what to do. Even on the 8th floor, Alpha firefighters will know how to get you and your power chair safely out of the building.
  2. Relax. Stay in your apartment and wait for your floor’s fire warden. It takes fewer than 10 minutes for Alpha firefighters to get in their trucks and come here.

During that time:

Do NOT take the elevator. Do NOT go downstairs. Do NOT evacuate the building. Listen to your fire warden who may decide to have you move to the stair well to wait for Alpha. If you move, be
sure to close your door. One reason it might be a good idea to move is because there might be smoke
and staying on your floor but moving to a stair well where there is no smoke will make your
breathing easier.

**Note well; Your February 16th hug will not save your life. It will make you feel better to know
you expressed appreciation before you needed help.

–Joel Solkoff, co-chair, Arnold Addison Court Fire Safety Committee.

Interview with The Duke Taught Me a Lesson from Voices of Central Pennsylvania, December 2009-January 2010


From Where I Sit

John Wayne once granted me a telephone
interview on his experiences with cancer.
For those readers too young to remember [a
concept that defies imagination], John
Wayne (nicknamed The Duke) was an
Academy-Award winning actor who
appeared in 142 movies. His cowboy and
other macho roles served as an icon for my
generation on how a real man is supposed to
behave.

This is a column about fear. Miriam-
Webster’s Collegiate Dictionary defines
fear as, “an unpleasant often strong emotion
caused by anticipation or awareness of danger.”
Fear “implies…loss of courage.” I am
familiar with the fear that comes from:

Having an oncologist look up from my
pathology file and say, “There is no doubt
about it. You have cancer.”

Sitting for hours in radiation waiting
rooms as my fellow patients look at each
other and wonde who will live and who will
die.

Experiencing the side effects of radiation
slowly burning my spine and resulting in
the odd experience of standing at a jogging
track ready to run (forcing myself to run)
and being unable to do so.

Being unable to walk across a room without
falling—I once fell in front of a
prospective employer three times during a
job interview.

I cannot go from my bed to the bathroom
without transferring to a power chair. I
know about courage and my lack of it,
about appropriate and inappropriate anger
and the need to put my past behind me and
be human—not a cripple; human. Here in
my apartment in State College, I recognize
my New Year’s resolution must be to
behave (to excuse the sexist expression)
like a Man.

Twenty-one years ago I was an arrogant
journalist writing an article for The New
York Times on the emotional effects of surviving
cancer. At the time, society was still
pondering such questions as whether it was
a good idea to tell patients that they had
cancer. Doctors thought it prudent not to
disclose likely side-effects. The newspapers,
examining the statistics on cancer
mortality, featured headlines on the failure
of the War on Cancer. By doing so, the
media had masked the remarkable progress
being made especially among children and
young adults. At a time when my mother
refused superstitiously to say the word cancer
out loud, spelling it letter by letter, parents
of cancer survivors had trouble conveying
the reality that when a child has cancer
it need not be a sentence of death.

I was not sufficiently savvy to realize that
the vagaries of life were mirrored in the
familiar vagaries of journalism. As I later
learned, the chief editor of the Times’
Magazine made it a practice to reject the
first draft of every free-lancer. Wendy
Moonan, my immediate editor, wanted my
revision to include an interview with John
Wayne. Wayne had lung cancer and since
1964, despite the objections of his business
managers, he served as a spokesman for the
American Cancer Society. His commercials, which
featured a pitch for early detection,
were model John Wayne sounding
essentially like someone who
would shoot you without pause if you did
not immediately send a check, which many
viewers did. Wendy warned, “You cannot
tell him where you got this telephone number.”

I dialed. John Wayne [JOHN WAYNE!]
answers the phone and says, “Unless you
tell me where you got my phone number, I
am going to hang up on you.” I turned in my
editor without a moment’s thought.

Two weeks after the doctors removed
Wayne’s lung, he was back at work making
a movie. “I jumped into a river with handcuffs
on in January…and that was tough. It
kept me from developing a protection
which I thought I needed but which I didn’t
need.” I replied that my experiences with
cancer left me with unresolved feelings that
were getting in the way of living my life. He
dismissed the idea that I should, as he put it,
feel sorry for myself. John Wayne said,
“The thing to do is just try your damndest
without telling anyone else about it.”

For its own reasons, The Times published
my first draft which did not include the
Wayne interview (making this a Voices
exclusive). Less than a week later, I was on
Good Morning America feeling sorry for
myself for a brief moment of public
acclaim. Less than a year later, Wayne died
of stomach cancer. Today, I still remember
his advice with reverence, despite the fact
that I detested Wayne’s politics. In
February, I plan to discuss:

1. The wisdom of John Wayne

2. How to implement that wisdom here in
Centre Country to help reduce fear among
our disabled and aged population.

(Our community’s considerable private
and academic emotional counselors are
invited.)

Joel Solkoff, author of The Politics of
Food
.

Why I came to State College: For the money from Voices of Central Pennsylvania, November, 2009

From Where I Sit:

I came to State College for the money.

In March 2002, I was sitting in the Office of Professor Elias Mpofu, program head for Penn State’s Rehabilitation Counseling Program, a program I was just invited to join.

Professor Mpofu asked, “Why did you decide to come to Penn State?”

“For the money,” I said. “No one would give me more money than Penn State.”

Professor Mpofu gave me a look of deep understanding. We spent the rest of the visit discussing Professor Mpofu’s specialty; primitive African beliefs on illness and disability. Professor Mpofu published a well-received paper about a Tanganyika ritual where the magic powers help a disabled person use secret forces to be liberated from the disability. (Yes, I did ask Professor Mpofu to perform the ritual on me and he is taking a long time getting back to me.)
By accepting Professor Mpofus’ academic offer I was agreeing to a career path ending in my becoming an Occupational Vocational Rehabilitation (OVR) Counselor for the Commonwealth of Pennsylvania. My job as an OVR counselor would be to help people with disabilities get jobs. Walking was part of the job description for the job Penn State was training me. I do not walk.

Therefore, no matter how well trained I am there’s no way I can become an OVR counselor without being able to walk to people’s homes where the home is not
From Where I Sit accessible. Being able to walk is job critical. With a single stroke of the pen, I had signed up for a grant from the government to make me the moral equivalent of able-bodied when the government had determined just two years earlier (at great governmental expense) that I am permanently disabled.

The attraction for me of being an OVR counselor is best described in the recollections of Abraham Nemeth, a scientist who is blind and who has become a mentor to the still-trendy summer camps specializing in teaching science to low-vision students. Nemeth’s biographer Carol Castellano writes, “Dr. Nemeth says that he was discouraged from making mathematics his undergraduate major by vocational counselors because of his blindness and the lack of Braille materials. He acquiesced and switched to psychology instead. But take a look at the courses he chose for his electives at college—analytical geometry and differential and integral calculus….”

I wanted to be a successful vocational rehabilitation counselor. I believe I have a special calling based on my disability experiences to transform my experiences with assistive technology to make it easier for people with disabilities to use new technical equipment to get higher paying jobs leading to a career.

Now, I am on medical leave from the Rehabilitation Counseling Program. My health has not been good, but not as bad as it sounds. Last year, I was in the hospital three times, once for diabetes that nearly killed me; second for treating difficult pneumonia, and the third time to evaluate a badly damaged right shoulder that requires a shoulder replacement operation where the technology has not kept up with shoulders. The medical field has made great progress with knees and hips, but not with replacing an entire shoulder. The result, no shoulder surgery for at least 25 years and periods of pain.

In my last column, I promised to provide you with my personal financial information. Last year (2008), I earned a total income of $21,256.80. All my income came through my monthly Social Security check. Out of a monthly check of $1,688.00, Medicare, my only health insurance (helpful during the period when I was in the hospital last month) deducts $210 off the top. Rent and electricity costs $830 and $145 for phone and high speed computer (I have daughters in two different states).

I have hopes of economic redemption through…

I want out of poverty. And I want a job that will earn me a way out of poverty. [Insert Sylvester Stallone Rocky Theme Song here.]

—Joel Solkoff, author of The Politics of Food.