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By       (Page 1 of 1 pages)   2 comments
Message Mary Pitt
The whole nation cheered as Jason McElwain was shown on the news, becoming the hero of his high school basketball team in Greece, New York. This autistic young man, having been given the "honor" of being the team manager for his school, was allowed by his coach to suit up for the last game of the season, (so he would feel connected while sitting on the bench), and was allowed to actually go onto the court in a game that was already "lost" just to give the kid a thrill. To the surprise of everybody, probably not least the unlikely hero, the young man was totally pumped by adrenalin and sank a series of unbelievable shots, winning the game. One who has spent a very long life working with and advocating for persons with handicaps would probably ask, "Why was such a person relegated to the position of 'manager' of the team when he was so obviously gifted at the game? Couldn't be because he was a bit 'different', could it?"

However, this did make young Jason a fine example for all the young people in the nation who are suffering from the same or a similar handicap and a ray of sunshine for their parents and friends. The success of this fine young man stands as a beacon for all those who daily struggle with problems of habilitation for such children, too often with a considerably lesser degree of success. Of course, our President, with his popularity at the bottom of the ladder and eager for positive publicity, grasped at the idea of meeting Jason and appearing to truly care about persons with handicaps, and I am sure that Jason was awed and pleased to be in the company of the leader of his nation.

But, as usual, these beautiful photo-ops need to be looked at a bit more carefully. First, Jason is far from typical in any way. His parents appear to be well-educated and upper-class, a valuable asset to a child with a disability. They could undoubtedly afford the care, medical, psychological, and habilitative, that is necessary to assist such a person to the full realization of their potential. This is far from true of the parents of most children with early-childhood disabilities. For most it is an immense and lifelong struggle to gain for their children the basic needs of life, searching through the available services that are available to low-income people. Once all the family resources are depleted, which doesn't take very long, they are reduced to seeking services from Medicaid doctors who know little, and often care less, about the specific needs of patients with these conditions. Too often, their medical advice is, "Put him in an institution and forget you had him." Alternatively and more gently, they may advise that the children need "professional help".

Now, this would not be the same kind of "professional help" that is available to persons with the private funds to puchase them on the open market but, too often, in state- or county-supported clinics or "residential facilities" where their level of care is decided by the "bean-counters" in governmental offices or the legislators at any level who are mindful of the "bottom line" and the political effect of the necessary tax rate. If the parents are insistent on keeping their child in their own home, "special education" is furnished and they can go and sit in a classroom where they receive a minimum of personal instruction, are not expected to actually learn or to become literate, and mark time until they can receive a "high school diploma", and go on to the next step.

This "next step" too often involves going to live in a "group home" where they live with several other people, usually of the same sex and connected only by a similar handicapping condition. Too often, these "homes' consist of being :"warehoused", marched off each morning to "sheltered workshops" where they spend each day doing menial work for pennies per day under the supervision of "professionals" whose job is largely to keep them under control while going through the motions of "teaching them to work". When their day is done, they are transported back to their domicile where they are fed, supervised while they spend their "free time" watching television or chatting, and then are hustled off to bed early so they can "work" tomorrow.

If they feel the need for personal attention, the best way to get it is to display "behaviors", which gains the desired result for a time. However, over-use of this tactic can bring a prescription for "behavior-modification medication" which will keep them sufficiently drugged that they will not do it again. Very rarely are they allowed to team up with a friend, rent an apartment or a house, and live "independently", since there are few programs which will allow them to learn to make good decisions, to budget, or even to know what is required to live independently.

All this time, it is necessary for them to live on the stipend provided by Social Security Dependents' benefits, Social Security Disability, or SSI, most of which is paid to the facility which provides their care, leaving them with very little for "personal expenses" such as clothing and toiletries. When living in a sheltered living situation, they are not even in control of the use of their food stamp allowances, having them "contributed" to the communal kitchen. Nearly all those who are developmentally disabled, autistic, or Down's syndrome are doomed to a life of poverty and control by others, finding their only enjoyment in the limited human contact and the few carefully-controlled recreational opportunities provided for them.

These people, through no fault of their own, make up a large percentage of the population who require public support through the government "entitlements" which are, we are told, responsible for the bankrupt condition of our nation. In every legislative session on every level of government, much time is spent on trying to "reduce entitlements", to cut spending, and to reduce even more the assistance which is so essential to the lives of persons with handicaps. Even the recent creation of Medicare Part D serves to reduce the amounts available for their care. Most, if not all, states pay the "premium" from Medicaid funds so that the amount is not deducted from their meager monthly checks, but many find that they must pay the "deductibles" and "co-payments" which were not previously required. In addition, some of the medications on which they have depended for health or for life itself are "not on the formulary" of the insurance company which was chosen for them.

One lady of our acquaintance has had multiple coronary by-pass surgery and finds her cholesterol virtually un-controllable, due to a genetic liver defect. The only medication that has proven effective in controlling the problem is a new one that was prescribed by the State Medical School Hospital. You guessed it! This medication is not in the "formulary" and she has to pay for it herself. The cost for two tablets daily is $64.00 per week which is a fixed payment of $275 per month which must be paid from her $700 per month Social Security Disability check.

We must not be overly impressed by the photos and film clips of The Prez joshing and chumming around with J-Mac. It may appear to be that this is a man who is accepting of and concerned with persons with handicaps when in fact he regards them only as unnecessary burdens on the budget of the United States and impediments to his supreme goal of tax cuts for the rich and world conquest. To his elitist outlook, these long-suffering and wonderful people are simply in the same category with the hated "Welfare Queens" and undeserving of any form of public support. If the good people of America allow themselves to be misled by his publicity stunts, we will find that we will have allowed him to destroy these treasured friends and neighbors with his "compassionate kindness".
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This writer is eighty years old and has spent a half century working with handicapped and deprived people and advocating on their behalf while caring for her own workung-class family. She spends her "Sunset Years" in writing and struggling with The (more...)
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