(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.
But many people do not want a PC at all so what we also need is a way for the needy people to simply call an 800 number and ask for help from an expert to do the search for them and then email the results to their caregivers, the results which are simplified and perfected by the expert.Or snail-mail the results just like the Library of Congress does with books and magazines on tape.
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.
Janine M. Lodato
P.O.Box 838
SAN ANDREAS, CA.
95249-838
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