|People with Special Needs Down Syndrome Report||
|VOL. 17 #4||SSN0731-566X||Summer 1997|
EDUCATION WEEK. Groups representing education complain that the IDEA Act (PL 105-17) does not go far enough in allowing the removal of violent and disruptive disabled children. It also quotes the director for the Council for Exceptional Children as saying it was a remarkable achievement. Law now requires that a school prove beyond a preponderance of evidence to a special ed hearing officer that a student could injure himself or others before suspending the child for more than 10 days. NDSC opposed the legislation, but the Arc, UCPA and Easter Seals supported it. We are strongly pleased with the special efforts given by legislators, their staff and the Executive Branch in taking a conciliatory position and using extra efforts to reconcile the divergent views; you can't progress if you don't move! If you examine our last few issues, you will see that we were perhaps the first to commit ourselves to the issue and some of our suggestions were accepted. Senate leaders and their staffs deserve special credit for this new law that won't likely need to be amended until sometime in the next century.
CARED ABOUT, IF NOT FOR. The May AARP Bulletin
starts a long article which triggered this article. The front page showed
Kimber and his parents and judging from it I have no doubt David is well
The other families shown are probably caring for an adult who has faced
challenges. Some are in residential care programs away from home such as
Massachusetts (who someone has paid to have added to our mailing list). In
honor we want to mention that generally people in that state are both
and far thinking. We hope that someone who reads this will discuss some of
The AARP article is titled "Who will care for Paula?" Paula lives in Pennsylvania with her parents who are in their 80's. In their case the answer is "Nobody will do it as well as you have done." but the precise answer to the question isn't known at this time. Robert has two brothers and two sisters and they all love him but nobody will take the place of his parents and that probably will be true in most cases. Similarly, in most cases, SSA will use taxpayer funds to try to ensure that all the disabled people find their roles (and that covers nearly everyone we are writing about). Although less involved, Congress and whoever is President also care for and will continue to try to assure that good care is provided. Ask your librarian to help you get a copy of the AARP article if this is a significant subject for you. Hopefully, younger people are being helped so their developmental challenges will be advantageously dealt with and they won't need total help when they become eligible for old age assistance.
SEIZURE DISORDERS IN DS.
I have been writing on this periodically for some time, but in response
to my inquiry,
the Epilepsy Foundation of America sent me their reprint #11025, which is
with the captioned title by a trio of medical doctors with the first author
my long-time friend Sig Pueschel. I have been intrigued by epilepsy for
half a century and wasn't pleased to have to ferret out many employees with
in the mid-fifties while I was the Civilian Personnel Officer for an 18
working out of Chicago.
Now back to the reprint which is from V.48 Arch Neural March '91. It seems as if I had reviewed it five or six years ago. There were 405 research subjects with DS, 33 of whom had reported seizure disorders. About 40% of them started before age one, and another 40% had partial simplex or partial complex seizures as well as tonic-clonic seizures.
Individuals with a history of a single provoked or unprovoked seizure were not included in the group with seizure disorders; 384 had trisomy 21, 15 had translocation, and six had mosaiscism DS. Only one of the 405 subjects had febrile seizures. The second peak starting in the third decade is listed by the authors as seeming unlikely that the development of Alzheimer's dementia was responsible, but they say it is one possibility. They confirmed that seizure disorders in patients with DS were easy to control. It is an excellent article; anyone serious about the association will want to read it as well as many of the excellent references cited that they can obtain. I recommend asking EFA for help (Epilepsy Foundation of America, 4351 Garden City Drive, Landover, MD 20785-2267 - phone 800 EFA 1000), but I will be pleased to send a copy of the article I have to all those who send a SASE.
MAILING LIST PRUNING. Like deciduous trees, this is a good time to remove dead wood from mailing lists. Those of you who have never sent contributions, as well as those who haven't sent anything since 1995, will have their labels retired. We aren't funded by grants or government largess so we reduce available funds obtained from contributions if we mail to people whom we can't educate or motivate and aren't interested in having their awareness heightened. Although some likely will find it contradictory, we will send a sample copy to all addresses contributors these past few years send us. It costs about 25 cents to print each copy plus about half that again for mailing so we do need a few dollars from time to time.
AMERICAN MEDICAL NEWS.
This 40 plus page weekly tabloid is published by AMA and costs $105
The following tidbits were gleaned from the 2-24-97 issue:
WASH YOUR HANDS - "Don't Get Caught Dirty Handed," a free educational brochure on the importance of hand washing. For more information or to order, call toll free, (888) 97-BAYER.
ADD CHILD CARE. Parents of children with attention deficit disorder or learning disabilities can get help in choosing a child care provider through a new booklet from Learning Skills, Inc. Cost is $4 plus a self-addressed, double-stamped envelope, from Learning Skills, Inc., 119 Wyndmere Road, Mariton, NJ 08053.
SUBSTANCE ABUSE PREVENTION. More than 500 books, videos, posters and other resources for alcohol and drug abuse prevention are described in the "Drug-Free Catalog for Safe Schools, Communities and Workplace Programs." The catalog is produced by the publishers of Student Assistance Journal and EAP Digest. For a free copy, contact Performance Resource Press, 1270 Rankin Drive, Suite F, Troy, MI 48083; (800) 453-7733.
DONATED SUPPLIES. Nonprofit organizations can get contacts with hundreds of corporations that donate new products through membership in the National Association for the Exchange of Industrial Resources.
The group collects donations of new overstock inventory, then redistributes it to nonprofit organizations across the country. Dues range from $255 to $595, plus shipping and handling, but the products themselves are free. Members can choose items they need from 300-page catalogs issued every 10 weeks. Offerings include office supplies, computer software, janitorial and maintenance items, toys and games, paper goods, tools, laboratory supplies, clothing and holiday party items. New members are covered by a money back guarantee.
For a free information kit, call the nonprofit program at (800) 562-0955.
This will be a recurring subject as the broad problem seems to be
pervasive in rich
countries. Most of the material for the article comes form the new
DIETITIANS PATIENT EDUCATIONAL MANUAL
available from Aspen (7201 McKinney Circle, Frederick, MD 21704). It
plus $25 handling, but it is a very large two-volume set and appears to be
Your librarian probably can help you locate more than enough free
provide a base of information.
Causes are unclear, but it seems prudent for most people to discuss the matter periodically with their physicians. The book referenced (in Chapter 18) recommends against extolling or criticizing dieting to young people, especially girls in puberty. I got the impression that dieting is one of the first signals that eating disorders could develop if medical care is not sought.
If such disorders are evidenced, it might take several years for recovery.
Anorexia and Bulimia are two of the major condition; some of the differences between A & B are that in A the patient is likely to be introverted, whereas in B he/she tends to be extroverted, A turns away from food to cope, but B does the opposite. A's have difficulty in assessing body size, but they are obviously thin to others; B's have little difficulty in assessing their body size; A's frequently deny the problem but B's recognize their abnormal eating pattern. Anorexics have low self-esteem, but don't display it and are considered great girls. Bulimics try to be super girls.
The following are resources: Anorexia Nervosa and Related Disorders, P. O. Box 5102, Eugene, OR 97405, Center for the Study of Anorexia Nervosa and Bulimia, 1 West 91st St., NY, NY 10024; National Association of Anorexia Nervosa and Associated Disorders (ANAD), Box 7, Highland Park, IL 60035. Our next article on this subject will include any comments/items you send along with more advanced information from Robert's sister, Margie Brekken, who is a school counselor and who has helped us for 25 years.
ENJOY A FREE HOTEL NIGHT - Call 1-800-506-2722 for details!
PREVENTIVE MEDICINE. "We have received your letter to us regarding the blood tests performed for you and your family at local Health Fairs. We realize the benefits our members gain from the Health Fairs, as well as the savings. Many of our members have detected problems early on, and have told us that they would not have had these type of tests if the Health Fairs were not convenient." Let us print a statement from your health insurance on what they will pay for what is considered preventive medicine.
TENACIOUS, RESOLUTE, STUBBORN. Some people with DS are sub-labeled stubborn, but parents of people with DS like General Charles DeGaulle, Senator Sam Hayakawa, Prime Minister Golda Meir, were infrequently so described, but few didn't recognize their strong leanings toward the first characteristics. I would have added Pearl Buck Lossing was tenacious and resolute. I misplaced my "sources" for considering that her daughter, Carol, had DS, however, her picture on p. 86 of the June BIOGRAPHY didn't reveal any DS stigmata to me. A couple of decades ago I perhaps could have resolved that question as I was in communication with an official of a residential facility where I believe Carol lived, or had lived. Anyhow, it was 35 or more years after Carol was born that the world learned there are 46 Chromosomes in normal humans and those that have 47 also have DS so Pearl could not have had what today would be considered a positive diagnosis.
SMALL BUSINESS LOANS FOR PEOPLE WITH DISABILITIES. Direct loans are available to help people with disabilities establish, acquire, or operate a small business. Write the Loan Policy and Procedures Branch, Small Business Administration, 409 3rd St. SE, Washington, DC 20416.
SHRINERS, VA AGREE ON SPINA BIFIDA CARE. The VA has announced an agreement with the Shriners Hospital for Children (SHC) to provide medical care to the children of Vietnam veterans who suffer from spina bifida. The SHC will evaluate children with spina bifida whose eligibility has been established by the VA. The agreement follows a National Academy of Sciences report last year suggesting a possible link between parents' service in Vietnam and increased risk of spina bifida in their children. A 1996 federal law enabled the VA to provide medical benefits, vocational training and cash assistance to children of Vietnam veterans born with this condition.
One of our favorites is looking for a full-page about them, but we know
be happy with this item and will be looking for future relevant articles.
taken from the June NEWS & NOTES
(Down Syndrome/Aim High!, P. O. Box 12-624, Albany, NY 12212). The
father of an
8 year old with DS, who also is a New York insurance planner, Bill Van
this item which he titled "Family Sharing with Split Dollar
"Your grandchild is a special needs child. You understand the extra financial burden this special condition creates for your daughter and her husband, and you help when you can. Although planning for the future of all of our children is necessary and important, planning for special needs children requires some extra thought."
"We expect that most kids will grow up and go off on their own. Most special needs children, however, may not be able to account for their own financial well-being. If your daughter and son-in-law should predecease your grandchild, will their remaining assets be sufficient to provide for their children's well-being?"
"Life insurance on the lives of the parents is one of the better solutions to address this problem. Usually, the policy is purchased on the primary wage earner, or the policy could be a joint life policy."
"Of course, life insurance has a cost associated with it in the form of premiums. Without help, insurance represents another cost for your daughter and her family. As a concerned grandparent you would like to help, but you are concerned about your own financial future. If you give away your money now, who will help you if you need it later?"
"There is a way that you may be able to help your daughter and her family, yet not give up full control of your assets until you don't need them. It is a variation of a plan used by businesses with business owners and employees. It's called 'family split dollar.'"
"In effect you 'loan' money to your daughter and her husband, usually without interest. Your daughter and her husband purchase a life insurance policy to benefit their special needs child, or all their children, for that matter. They provide you with a collateral interest in the cash accumulation values and the death benefits of the contract."
"Your daughter and her husband are treated as if they received a gift from you. The amount of the gift is based upon the value of the premium paid, which will be far less than the death benefit of the policy."
"Assume that your daughter, Mary, is 42 and your son-in-law, John, is 45. Their concern is providing supplemental income for their 'special needs' son, Adam, who is 6. They intend to finalize a 'special needs trust' which will be funded with a life insurance policy that will pay a death benefit when they both die and are considering a $100,000 death benefit, with an annual premium of $1,200."
"You could transfer the $1,200 premium to Mary, not as a gift, but a loan. Mary and John would apply for the policy using your $1,200. You would receive a collateral interest in the policy to secure your interest. It will be deemed that you made a gift to Mary and John in the first year of $3, and this amount will increase slightly each year."
"If you need to get at the policy cash value, you can do so. If you decide that you no longer need the money you have loaned them to purchase the insurance, you may make a gift of all the premiums that you have paid. In any event, you helped create a "flexible plan" for your daughter and her family, yet a plan that allows you to maintain control of your cash if you should need it."
VIDEOS. In the journal cited above, there are notices of two relatively new videos about people with DS. For several years, Robert has sung along with his cassette of "Standing Outside the Fire," and he told me that Rhonda Young, Education Director at the ATC had shown the Garth Brooks video of that name (V2 of the Garth Brooks Video Collection) to Robert and some of his peers. It is about a young man with DS. Somewhat similar is Natalie Merchants' song "Wander" which shows a young woman with DS singing along. Nancy Holroyd (946 N Mansion Road, Duanesburg, NY 12056) is the editor of NEWS & NOTES which perhaps is the best value in a DS dominant periodical you can obtain; send $10 to the address in the preceding article.
DR. R. T. VINNARD.
As promised in the June issue our former "Stuttering" editor's provocative
article follows. We published several chapters of his autobiography so are
to attempt to identify salient aspects here, but he did well as a stutterer
in medical school and has done well ever since. He is both a surgeon and a
discussing his article with a friend who stutters, she indicated that she
the 5th or 6th generation first born of stutterers. Perhaps Dr. Vinnard
us with an article or comments of a geneticist or two on the likelihood of
being a factor in stuttering. His address is still 42388 Ave. Eleven,
by R. T. Vinnard, M.D. Stuttering is an abnormal speech disability
an involuntary silent and audible prolongation or rapid repetition of the
of the first letter of a word or syllable. It is generally accepted that
two million American adults suffer from this disability. Greatly adding to
the difficulty in
trying to analyze and understand this problem is that not only do
from dysfluency percentage from 5 to 95% of word blockages, but also that
each individual can vary that much in many different times or situations
each day, or even each hour
of any one day. In England and probably in other countries, it is more
referred to as stammering. This speech disability has been recorded since
times and apparently exists in all countries and languages of the world.
and most unfortunately, despite a limited amount of medical research and
varied approaches to therapy, there does not seem to be statistical
evidence of a
decrease in percentage of adults who present this disability. Stuttering
is a relatively rare
problem. Its victims usually manage to adjust sufficiently to lead
careers. This must explain why there is so little interest and activity in
medical research. Illustrative of this lack of interest and activity is
of being approached by a young man at a group support meeting in Pasadena.
of his stuttering problem it took him considerable time and struggling to
his name and that he was senior medical student at a California medical
school. I asked
him what his professors had done for him about this speech problem. He
in his entire four years, no professor had discussed with him anything
It is this lack of knowledge and interest in this disability which needs to be changed. Back in the early decades of this 20th century when the specialties of modern psychiatry and psychology were developing it was generally accepted that stuttering had psychological and psychoanalytical causes. When treatment based on these approaches was not accomplishing much towards successful therapy they gradually lost interest in this approach. During the mid decades of this century the study and treatment of stuttering gradually shifted from those medical specialties to the corrective speech attention of university speech departments. Unfortunately, however, the erroneous theories that stuttering was primarily a psychological problem both as to cause and therapy was carried over into the areas of study, research and therapy. The remnants of this basic misunderstanding that stuttering had psychological rather than organic causative factors prevented any significant progress during the middle decades of this century.
In fact although during the decades of the 40s, 50s, and 60s, I had access to, and participation with, several of the leading stuttering researchers and therapists, not until in the 70s was the fact demonstrated that a stuttering block was actually a simple blockage of the speech airway. Although this all-important explanation of the organic mechanical process has been authoritatively and unquestionably demonstrated, it still is not accepted by all students and researchers in the field. The presence of a listener does not cause stuttering until the speech airway is blocked by vagus and recurrent laryngeal nerves motor impulses. There is no stuttering block if the airway through the larynx and vocal cords is not blocked. About 95% of the time the one constant factor which precipitates this mechanical process is the presence of a human listener. Of equal and largely unexplained significance is the fact that practically no one ever stutters while singing, reading in unison and to somewhat less extent while whispering. This later observation has an apparent explanation that the vocal cords do not lock during whispering because in a whisper the vocal cords do not vibrate. Apparently the vibration of the cords contributes to locking.
Over recent years I have received several written and quite lengthy disagreements from PhD professors of universities that stuttering does not occur unless there is a human listener. Incredibly most of these disagreements were based on placing subjects alone with a tape recorder and recording their stuttering on a tape. The answer of course is that the tape recorder is a listener.
Our studies also made the interesting observation that speaking in a low volume, often possible in one-on-one conversations, consistently reduced the percentage of blocks by as much as 50%. Since the presence of a listener is the only constant causative factor present in all stuttering blocks, the biggest foci of researching the problem should be to discover what neurochemical or neurogenic motor impulses produce this mechanical process.
Since it has to be accepted that wherever these psychological or neurogenic factors originate, they do not produce the mechanical speech airway block until they are translated into muscle responses that travel down the vagus and recurrent laryngeal motor nerves and produce anatomical reactions that block the speech airway. There has to be one specific neurophysiological or neurochemical substance or - possibly part of the neurotransmitter family which produces the muscle-ligament structures that close this speech airway. The single greatest need towards solving and eventually eliminating this disorder is to interest and persuade neuro-research elements of the medical profession to get interested and active in this specific research.
An ultimate request of this article is that each student, therapist, or researcher of the stuttering problem will devote a few minutes of thought and consideration to the following: Picture a person who stutters alone and addressing imaginary conversations to imaginary human listeners or to companions such as a dog, horse, or inanimate objects such as a tractor, tree or whatever. Such audible conversations will be carried on indefinitely without any trace or fear of stuttering. But the minute a human listener is present within listening attention, this fluent speech will be replaced by a certain but variable dysfluent and stuttering vocalizing.
To cure an individual of stuttering it is not necessary to install a non-stuttering normal speech mechanism. Every person who stutters is already equipped with a normal fluent speech ability. He adequately demonstrates this fact every time he sings, reads in unison, and talks to himself. All that is needed is to provide some change that will prevent the presence of a listener from allowing this existing normal mechanism to produce a normal fluent speech.
SLEEP APNEA. The 5-22-97 NEW SCIENTIST reports inserting a needle-like electrode into offending palate tissue and oscillating radio moves heat the tissue, denaturing the proteins in it and killing the area. Dr. Powell of Stanford is now testing the technique on 23 humans who snore because of blocked airways. Twice as many men as women develop apnea. Apnea has been linked to memory loss, high blood pressure, heart attacks and stroke.
WANT TO BE BETTER EDUCATED? Select either Rural Health Terms, Acronyms and Organizations (PVO 197.43) or Rural Health, Mental Health and Substance Abuse Directory (PVO596-38) and send $10 to NRHA, 1 West Armour Blvd (30l) Kansas City MO 64111.
REDUX. It isn't for those trying only to shed a few pounds. FDA restricts it to the severely obese due to 23 times the average risk of primary pulmonary hypertension. There have been suicides and suicide attempts.
MTV. Dr. Du Rant of Bowman Gray School of Medicine found "a significantly higher percentage of music videos aired on MTV contained one or more episodes of overt violence or weapon carrying than the videos aired on other networks."
DEVELOPMENT. This isn't synonymous with education which perhaps can be described as the implanting of information and culture whereas development more closely is an on-going evaluation process measuring the degree exceeding or following a chart of "milestones" of normal attainment. The ADVOCATE prints reactions of a mother of a child with DS just out of high school. She sees the benefits of mainstreaming, but asserts all DS needs are not met and that more speech therapy and academic help is needed, plus a job-skills focus to make them employable. If you have opinions on the relationship of mainstreaming to development, why not share some of them with the ADVOCATE (45 E 400 N, Farmington, UT 84024).
J.D. ODELL, M.D., FAAP. He writes "Ask the Doctor" in the ADVOCATE and has a chapter on DS medical consideration in DOWN SYNDROME: A RESOURCE HANDBOOK. He recommends thyroid screenings at birth and every year or two after for DS children. He also says teeth tend to be late in children with DS and there is a high incidence of missing teeth. Send your DS medical questions to the ADVOCATE.
PETS FOR DISABLED PEOPLE. We know of few disabled people that keep pets even though their value is generally recognized. Is that due to finances or the lack of caring skills? Please let us print your reactions or experiences!
KNOW OF POTENTIAL FUNDING FOR CHINA TRIP? Robert's brother, Sam (ND Teacher of the Year), and four of his better students have passed through the first requirements to participate in a visit to China but the sponsors haven't been able to secure a corporate sponsor. Share ideas/sources with Sam (RR5, Box 37, Devils Lake, ND 58301 or 701-662-5734). Sam will participate in a Fullbright-Hayes education program in Russia and will be attending the NASA Space Camp. He will have hosted a contingent from Norway (relatives) as you read this.
JOAN MEEKS. She regularly clips items for us such as the following: The first one
is by Buchta
of the Standard Examiner staff on the cost of Ogden's group homes. It
a plan to take special education kids over whom the state has custody
run group homes so they can attend local schools. The Ogden Schools
says Utah should then fund them.
More than one-half of the 20 to 25 new youth in custody special ed students live in the city's seven group homes run by private state-licensed providers or the state. The youth in custody program has doubled in two years to 1,000 children and the State funded almost a half million dollars. Not all have committed crimes, some have been either sexually or physically abused. The next clipping Joan sent was by Dick Walter of the Lakeside Review about the PALS dance group (most have DS). We will have another article on clippings we have received in our next issue - send yours now!
POSTMASTER/GENERAL RUNYON. He seems to be feeling his oats much like General MacArthur did before President Truman showed him "who was boss." Runyon apparently has ordered the printing of transition stamps so he can raise the rates regardless of the amount he gets approved. He also has asked Congress to approve new powers including the right to set stamp prices, pay large bonuses to his bureaucrats and phase out low rates for libraries and non-profit mailers. I hope Congress clearly tells him that no major change in rates can be approved this century and that no reduction in services for libraries or non-profit organizations can be made. We need Federal "management" of this essential communication enhancing program. It is OK that Runyon is shooting for the moon, but like the card game, hearts, there are consequences and it seems to me Runyon and his key subordinates that ordered the unnecessary stamps should make at least a partial rebate to bolster finances of the Postal Service Corp. Our President may have as many "guts" as Truman, but replacement might be too drastic.
THE MIKE VINING JOURNEY. Mike is a disabled single young adult surviving largely due to SSI and Social Security benefits. He has epilepsy, a high school diploma, and several years experience with the Adjustment Training Center. The services provided by the ATC have been terminated as Mike doesn't want his life controlled. The first episode will report on what likely will be the first one-third of his life journey which will be continued and expanded in the next issue to carry through being fully grown-up. The final episode will describe some of the problems and prospects for disabled people in general (including Mike) as they become seniors in our U.S. Society.
FREE CALCULATOR. Due to scant contributions these past few months, we will be pleased to send one to earlier contributors who request one. If you haven't contributed since 1996, please do so soon and we will immediately put a calculator in the mail with a series of numbers indicating the year, month and amount sent (such as 775). Send as many addresses as you wish to receive our next issue free along with contributions no matter how small.
|PEOPLE WITH SPECIAL NEEDS/DS REPORT||Non-Profit Organization|
|Northern State University||U. S. Postage Paid|
|School of Education, Box 850||Aberdeen, SD 57401|
|1200 S. Jay Street||Permit No. 77|
|Aberdeen, SD 57401-7198|
|Revised: June 14, 1998.|