(The most important campaign issue for all
politicians)
I have been fighting MS, in specific SPMS, for the last thirty years and
now I am a cripple in a wheelchair. At present I am in the process of writing
important books and technical articles. I enjoy being busy. However, after
fighting off an assault of multiple sclerosis (MS), my hands can no longer type.
I am quadriplegic and most people when they see me cannot deal with my
problems. I am a useless cripple in their eyes, a burden on society. But my
aging geek husband and caregiver, a Hungarian revolutionary, said it well:
"nobody is a cripple on the Internet". The Internet is a great equalizer, the
greatest ever invented.
So we had to put it in a poem. Poems are a great and short way to
communicate, perfect for the Internet especially on small size screens like a
mobile phone or a PDA.
There once was a girl from the hills
Who had lost all her motor skills
So she uses the Net
It is a safe bet
For information and writing drills
The Web is her means to explore
The world's mysteries in digital store
A cripple she is not
Her brain is still hot
With Internet she is equal or more
The Internet can also be great benefit or extreme danger to mankind.
While it can enable and equalize and democratize all the people of the world it
can also serve a great tool for destructive elements in our populations: the
terrorists, the sexual abusers, the pedophiles, the scam artists and many
others. Each new great
invention has the potential for both uses: doing great good, but doing great
evil as well.
In order to continue writing, I now rely on voice recognition technology
to do my typing for me. Baby boomer that I am, I must learn new tricks of the
trade, with new tools of the trade, taking into account the effects of my
multiple sclerosis. Once connected to my new technology, I feel connected to the
world via email and word processing.
Voice recognition technology is still in its
infancy, and has provided me with some amusing and frustrating moments. Finding
a voice recognizable to readers is tricky. Finding a voice recognizable to a
computer is even trickier. But voice recognition plus my husband who works as my
InfoBot: I tell him what I want and he keyboards it into the computer, thus he
is an information robot of mine. These capabilities allow me to become involved
with the world in spite of my quadriplegic condition. I find this involvement
very beneficial for my mental conditions and even my physical well being. By
concentrating on something which is worthwhile I do not feel that anybody who
reads my articles pays any attention to the fact that I am
handicapped.
In order to connect to the Internet one must have
a PC (personal computer) and the Windows version by Microsoft just simply will
not do. Windows based PCs by Microsoft are maddeningly complex, insanely
unreliable and criminally expensive.
The Internet can be very good or it can be a
pain: and it can be summed up in the following poem:
Data, data everywhere, not one chance to think;
Email, email overbear, one can hardly blink;
Virus, virus constant scare, Windows, you sure
stink;
Promo, promo all unfair, in trivia we sink;
But,
Info, info searched with care, to knowledge one can
link.
What we need is a simple, reliable, clean, low
cost PC like the ones running Linux and just equip this simple machine with web
search capability, e-mail features, instant messaging features and simple
document generation capabilities. That is all needed to get
involved.
The best way to control someone's chronic
conditions or disabilities is through involvement and the positive effects such
activity brings about. The so called mind body interaction and it
therapeutic capabilities. Most of the 100 million population segment of the USA
who are in need have major difficulties to participate in face to face group
interaction which would be very beneficial to bring about health improving
effects. But they can do it and can get involved in a "virtual" manner via the
Internet: instant messaging, blogs, emails, group teleconferencing are all
potential tools offered by the Internet.
We also need a tax break for
businesses, especially for small businesses, when they hire and retain an
informal caregiver as an employee. This tax break could allow the employer to
pay for high speed Internet access at the location where the caregiver has to
provide care: the home of the care recipient.
Businesses already have a tax
break when they employ a disabled person. The same or similar tax break should
be given to the business which hires informal caregivers or who already employ
such caregivers.
There are 44 million informal
caregivers in the USA. These informal caregivers are members of the family or
friends of the person in need of caregiving. There are 100 million people in the
USA who are in need of an informal caregiver. These are the frail elderly,
chronically ill and the disabled. This population sector is the fastest growing
segment due to the aging of the baby boomer population.
A courageous and enlightened
candidate for political office should create and push through the legislation
which would provide a tax break to the employers of caregivers, it would assure
that such politician or candidate certainly would be supported by much of the
above 144 million population segment: the combination of the informal caregivers
and the people who are in need of care.
The US Department of Labor
predicts that by 2008, 54 percent of the work force will be involved in caring
just for an elderly person making doctors' appointments, handling emergencies,
giving transportation, buying and cooking food, all the basic functions of life
the elderly person has difficulties to perform.
But the informal caregivers who
are also full time employed have a major problem; not everyone is able to manage
the conflicting demands of working and caregiving.
A MetLife study reported that 16
percent of employees who perform as caregivers quit their jobs and 13 percent
retired early in order that they could provide caregiving to the people in need.
This study found that the average life-time loss per such person was an
estimated $ 566 thousand in lost wages, $ 67 thousand in lower pension benefits
plus $ 25 thousand loss of Soc. Sec. benefits.
Also, many of the employees who
are caregivers get passed over for promotions and are the first ones who are
eliminated when a downsizing of the business takes place.
These problems of the employees,
who are also serving as caregivers, could be almost eradicated if the employers
of caregivers would let their caregiving employees to perform telework style for
some or much of their workload. About only one in four businesses offers
employees who are caregivers such advantages as flexible hours, telecommuting,
paid leave in case of emergencies and compassionate
understanding.
The legislation which would
support the employers of the caregivers could also include a double or increased
tax break for the employer if the business would allow the employees, who are
involved in caregiving, to perform most of their work with great degree of
flexibility such as telecommuting and flexible time.
So let us organize a strong
campaign for the Democratic primary and then the Presidential elections, both
which could include in their platforms the special tax break for the businesses
who employ and appreciate employees who are also dedicated
caregivers.
