People with Special Needs Down Syndrome Report


VOL. 18 #1SSN0731-566XFebruary 1998 

NOTE: All articles and the I pronoun not attributed to others are written by or identify George R. Johnson, Robert's father. Robert is 25 years old and has Down syndrome.

TOM DASCHLE, U.S. SENATE DEMOCRATIC LEADER. The three middle paragraphs from a recent letter are reprinted below:

     "I was impressed with the "People With Special Needs: Down Syndrome Special Report." You and Robert provide your readers with a helpful update on important legislation and organizations that assist those with special needs. I admire the obvious work you both put toward its publication."
     "An important piece of news regarding Commissioner Kenneth Apfel's review of SSI childhood disability implementation by the Social Security Administration (SSA) recently crossed my desk, that you may be interested enough in it to include it in your next newsletter. As you may know, for the past two months, the SSA has been examining quality assurance data, developing case profiles, reviewing adjudicators' instructions and conducting other oversight activities to ensure that their implementation process permitted every child who is eligible for disability benefits to receive them. Many of my colleagues and I had expressed concern that many children had been wrongly denied benefits as a result of stricter eligibility provisions included in the l996 welfare reform law. I have enclosed some information on Commissioner Apfel's review. I would be interested to know your opinion on this topic."
     "I was also pleased to read in the newsleter that you intend to offer me your insights regarding H.R. 1385, the "Employment Training, and Literacy Enhancement Act of 1997. Given your interest in this legislation, I have enclosed a status report of the bill for your information."

Some articles related to issues mentioned above are on page 8.


  1. The promotion of genetic investigation in order to probe deeper into knowledge of chromosome 21's identity (especially finding out what each gene lodged inside it is responsible for and how they interact), as well as to probe into knowledge of mechanisms intervening in the non-disjuncion to prevent the appearance of the syndrome.
  2. The study of the specificity in Down's syndrome, trying to isolate typical characteristics of Down's syndrome so that it is possible from specialisation to design more efficient instrumants of a medical psychopaedological nature for the rehabilitation and education of persons with Down's syndrome.
  3. The search for practical solutions (strategies, programmes, methods, etc...,)which taking into account findings of recent scientific research, provide concrete solutions applicable to the health care, early attention, education, social and labour integration of persons with Down's syndrome.
  4. To specify the quality of life model proposed for persons with Down's syndrome in three aspects: a) that their needs and expectations are met, b) that they develop all their potentialities and c) that they enjoy all their rights.
  5. In the area of health: an endeavour must be made to spread and establish preventive medical programmes for Down's syndrome everywhere in the world and also to maintain a critical attitude towards therapies not confirmed scientifically. By applying the principle "the same cases require the same treatment," organ transplants for persons with Down's syndrome who require them should be encouraged.
  6. Becoming aware of the important role the family as the Down's syndrome person's first natural nucleus of integration will encourage actions to be taken that are addressed towards effective training and involvement of parents in the attention, education and social insertion of their children.
  7. Specialised attention must preferentially reach those persons with Down's syndrome who have other additional serious limitations or needs which prevent their effective integration. Attention could be given to them in specialised centres, with the support of the family, attaining the level of normalisation that is possible in each case.
  8. In the field of education the Congress decisively supported three criteria: a) inclusion, with the proper supports, in an ordinary school, b) specific programmes and curriculum adaptations and c) the application of new technologies in the classroom as a particularly useful strategy.
  9. The Congress called attention to the importance that the adult life of persons with Down's syndrome has at the present time, including self advocacy, in such a way that the services provided are adapted to their rights, needs and demands, guaranteeing a positive quality of life.
  10. All the means at our disposal must be used to encourage effective integration of persons with Down's syndrome in school, work, culture and social life, with the understanding that non-discrimination means equal opportunities. Likewise, the change towards a better social image and participation of persons with Down's syndrome in public life must be pursued.
  11. Training and employment of Down' s syndrome persons in ordinary firms must be a priority as a source of personal realisation and autonomy and full participation in the life or the community.
  12. Encouragement must be given to the world wide creation of specific associatons for Down's syndrome, independent from the associations which attend to persons with mental retardation in general. These associations should claim representation and financial support from governmental departments.
  13. The Down's syndrome associations must ensure that parents, professionals and person with Down's syndrome are integrated in their organisation and management and they must be guided and reorganised by democratic principles.
  14. The services - to create them whenever necessary - have to respond to criteria of quality, efficiency and social economy and insofar as possible they have to be rendered and integrated in the normal services of the community.
  15. The training of specialists in University and in post-graduate courses is fundamental if persons with Down's syndrome are to receive global and specialised attention in accordance with their needs.
The preceding was submitted by one of our subscribers: Prof. Juan Perera, President of the 6th World Congress on Down's Syndrome, Cala Blanca, 2. 07009-Palma de Mallorca, Spain. More than 30 world experts on DS and advocates who attended are listed at the end of the document.

HOW WE GET MUCH OF OUR MATERIAL. "Thank you for sending me the Christmas issue Vol. 17 #7, PEOPLE WITH SPECIAL NEEDS - DOWN SYNDROME REPORT. I found it very informative and helpful.

Attached are some recently published papers that you might be interested in.

Regulators of Neuronal Survival (BCI-2, Bax, c-Jun) in Prenatal and Postnatal Human Frontal and Temporal Lobes in Normal and Down Syndrome Brain.

Alzheimer's Disease, Neuropathology and Dementia in Down's Syndrome.

Aging and Alzheimer's Disease in Down Syndrome: Clinical and Pathological Changes

Best Regards and Happy New Year!" signed: Professor Krystyna E. Wisniewski, M.D., Ph.D., Associate Director of Clinical Services at the George A. Jervis Diagnostic and Research Center, Head of Pediatric Neuropathology and Ultrastructural Laboratories at IBR.

I met Professor Wisniewski at an AAMR conference a decade ago and have watched her, her husband,and colleagues at the Institute for Basic Research in Developmental Disabilities turn out great research. The preceding article also came from a friend who was director of the International DS conference to which it relates. The Wisniewski's were among the dozen U.S. experts on DS who traveled to Spain for the conference. Comments on the articles listed above can be found on page nine.

CONGENITAL ANOMALIES. DHHS Pub. 96-1957 lists this topic on page 23, with the first sentence being: "Congenital anomalies are the leading cause of infant mortality in the U.S...." It also says that since 1989 there has been available a check box item on live birth certificates which would identify the most significant ones if properly documented. However DHHS says there is still substantial underreporting. It says the rate of DS for teenagers is 28.9, 56 for women 30 - 34 and 12 times as high for women 40 - 49 as for teenagers.

NOV. CONGRESSIONAL DIGEST. This is devoted to the pros and cons of National Education tests (3231 P Street N.W., Washington, DC 20007).

We have been deeply involved in this controversy since Robert was born; he and we have opted for community living. When we discussed this a minute ago he says, "he wants disabled people to have jobs." We think society is constantly better informed and likely things will continue to get better for all Americans who fall somewhat short of most National standards. However, there still are many who believe that only institutions (with specialized medical services) can provide the necessary care. Mary Owen (National Catholic Office for Persons with Disabilities executive) seems to get most of the crucial points reduced to one page of the NCPD National Update. We will send a copy to any subscriber interested, or perhaps if you write NCPD, P. O. Box 29113, Washington, DC 20017-0113, they will send you the entire Fall issue and make a label for the UPDATE for future issues. We know some of our subscribers have had children moved from institutions to community so if they or others closely involved in the question have strong views that we can publish, please inform us.

EXQUISITE GIFTS. The National Institute for People with Disabilities sponsors the General Store which ships great gifts UPS. It provides employment for people with difficulties. The prices are high according to our standards and we don't buy or use such merchandise, but some affluent people do. You can get a catalog by calling 1-800-YAI-9914 and decide later if you wish to order. They also provide what they call "Concierge Service" whereby all you do is describe the sentiment intended, a description of the recipient and the price range and they will wrap their selection and include a personalized gift card.

LARGE ADOPTIVE/FOSTER CARE FAMILIES FOR DISABLED PEOPLE! The January LADIES HOME JOURNAL (pages 72-79) has an update on the Geraldi family which cares for forty plus retarded people. The husband, Mike, is a pediatrician and his wife Camille is 5 years older - almost 50. She became familiar with children who have DS when she was young and she is quoted as saying that later she decided that caring for such youngsters would be her life's mission. She told Mike that and they decided to marry in 1975. Their first of two daughters was born in 1977. In '86 they took a biracial baby with DS and soon a couple of other babies with DS followed. Today, 14 of their children are formally adopted. Their non-adopted children receive about $5800 of aid annually from their home states plus Medicaid. Seventeen full-time employees are assisted by 20 to 30 volunteers. Camille is "Mommy" to all; she has taken one-half of the children to a tract in North Carolina and eventually Mike will join her there. Camille spends at least two days a week in Atlanta doing advocacy work. Their natural daughters live with Camille while in college. Some of the neighbors in the Miami area contend that the Geraldis don't live there now and the first location is just a business. Their zoning appeal was denied and the Geraldi's are able to continue in that area; however, they have plenty of problems and expenses. Comments/reactions solicited.

ALZHEIMER'S DISEASE/DEPRESSION. One of our long-time supporters Dwight Gowdey, wrote us that he doesn't believe every middle aged person with DS will also demonstrate dementia. We have for years recommended that cognition be assessed for adults with DS, which would tend to identify changes in cognitive functions and provide a baseline. They are doing this for Robert at the ATC. The following six symptoms may indicate dementia (from Page 46 of AHCPR, Pub #97-0702):

    is repetitive; has trouble remembering recent conversations, events, appointments; frequently misplaces objects.
    Has trouble following a complex train of thought or performing tasks that require many steps such as balancing a checkbook or cooking a meal.
    Is unable to respond with a reasonable plan to problems at work or home, such as knowing what to do if the bathroom if flooded; shows uncharacteristic disregard for rules of social conduct.
    Has trouble driving, organizing objects around the house, finding his or her way around familiar places.
    Has increasing difficulty with finding the words to express what he or she wants to say and with following conversations.
    Appears more passive and less responsive; is more irritable that usual; is more suspicious than usual; misinterprets visual or auditory stimuli.
     In addition to failure to arrive at the right time for appointments, the clinician can look for difficulty discussing current events and changes in behavior or dress. We would appreciate your views as to whether early diagnosis of AD is advantageous. It also may be helpful to follow up on areas of concern by asking the patient or family members relevant questions such as the following to ascertain any significant indication of depression. 1) During the past month have you often been bothered by feeling down, depressed, or hopeless? 2) During the past month, have you often been bothered by little interest or pleasure in doing things? Many disabled children and older people can benefit greatly from psychological counseling.

ARTISTICALLY GIFTED DS PERSONS. See VISUAL ARTS RESEARCH (143 Art and Design Bldg, 408 Peabody Dr., University of Illinois, Champaign, IL 61820) v.22, p. 35-46, Fall '96.

CRIMINAL JUSTICE AND BEHAVIOR. The December issue contains a report from two psychologists at the University of Montreal that mentally retarded people living in the community commit more crimes by age 30 than do others. Since the control group had lived in institutions much of their lives they didn't have the same opportunities or temptations. Crime rates generally rise as IQ scores decline. (See SCIENCE NEWS 12-6-97).

LIFE INSURANCE. We provided an overview of life insurance consideration relating to Robert on Page 3 of our Christmas issue. We mentioned that he had been issued a $5,000 policy through the Arc. Since then, Robert Clark and Mark Mehlhoff contacted us with offers. Although Robert met the Protective policy standards, the underwriters put him in a class which increased the premiums, but would be willing to reduce the coverage to $50,000 and that would cut the costs; we will consider that policy again sometime early in '98. The policy Mark presented includes a cash surrender value and that would complicate Robert's SSI status. We will have more articles on the issue and welcome reader's comments. If you are interested in a policy now for someone with MR under age 60, we suggest you call 800-503-9230 for details about the Arc endorsed policy, and be sure to get assurance that premiums won't be increased.

MR REVIEWED IN CHILD AND ADOLESCENT PSYCHIATRY. The December issue of the Journal of American Academy of Child and Adolescent Psychiatry contains two articles concentrating on the last decade by a group all or mostly from UCLA. Bryan King, M.D., Division of Child and Adolescent Psychiatry and M. R. Research Center, UCLA Neuropyschiatric Institute, 760 Westwood Plaza, Los Angeles, CA 90024-1759, perhaps is the key author and reprint requests should go to him; M. W. State, M.D. and Elizabeth Dykens, Ph.D., are also listed as contributors to both articles. They state that AAMR was founded by eight psychiatrists and although that rings true I had not considered that a likelihood based on my experiences with DS. They say that a search of Medline reveals there have been about 1,000 articles annually on M.R. since 1975. Many other historical items reported on go back more than 100 years. They are both excellent articles which should be expected from this Institute. They were written primarily for psychiatrists so if you read them and aren't a psychiatrist don't belittle yourself. They truly reveal the state of M.R. research and practices.

CELIA WYMAN. She was one of the key people organizing MOTHERS OF YOUNG MONGOLOIDS when Robert was born. Marilyn Trainer was her counterpart in Maryland. Her son Robbie and his group home friends are attending a newly formed satellite workshop training facility and she says they love it. Celia and Marilyn provided the pre-Congress drive for the DS movement and Celia organized the first meeting to properly organize the Congress in Alexandria, VA. at a sheltered workshop. I remember Marilyn and her husband were also there and I wrote about it in 1974, much as I write now. Celia personally exchanged letters with hundreds of people, but Marilyn's reports on her son Ben's development was an inspiration for all and was usually humorous. She has also written a book for parents and adults about DS and raising a child with DS that is still the best of its kind in the U.S. I'm quite sure anyone with a child with DS who writes Celia will get an honest and informative response (2806 Northumberland Hwy, Lottsburg, VA 22511).

"FREE" DISABILITY SOLUTIONS. Gretchen Koetters at Capabilities Unlimited now does their database so please print your desired label in black ink with the first name first followed by the last name and then your title and name of your company or organization if there is one. Gretchen is skilled and also makes new patient kits and does data entry for a Radiology Lab, but if you follow the preceding guides it makes her work easier; however, she will do the best she can with whatever she gets. Send the information to 9220 SW Barbur Blvd, #119-179 Portland, OR 97219-5428 to get this outstanding free resource on DS and related disabilities. If you want to help with the cost, make the check out to The Enoch-Gelbord Foundation. The final '97 issue is generally devoted to self-advocacy and nutrition, but Emily Kingsley's full review of RADIANCE DESCENDING, is also included.

FETAL NUCHAL TRANSLUCENCY TEST FOR DS. The 11-29-97 LANCET on pages 1629-32 contains several letters on the subject, which relate to an earlier article by James Neilson. The issue cited contains his reply with a response from the principal investigators. It seems that although the principal investigator and others continue to use the test it is unlikely that any resolution of the points at issue will be forthcoming soon.


PRIOR INSTITUTIONALIZATION. EXCEPTIONAL HEALTH CARE (V8 #11) cited the National Association of State Directors of DD Services (NASDDDS) as stating the most important gain in the Balanced Budget Act of '97 is the elimination of the requirement that under Medicaid, only people who had previously lived in institutional settings would qualify for prevocational, educational, and supported employment services. Between 150,000 and 235,000 likely will be eligible for supported employment services. (You can write NADDDS at 113 Oranoco St., Alexandria, VA 22314 or call 703 683-4202).

NDSC HONORS AAMR. Allen Crocker, M.D., past Board member and Medicine Division President of AAMR accepted the NDSC award on behalf of AAMR. For more than a Century, this organization has been a friend to all people with DS, along with others, who have been (or are) mentally deficient. A former AAMR President, Dick Koch, M.D., was the program planner and manager of our first conference in '73 which led to the formal establishment of the DS Congress. Robert and I are proud of our personal memberships in this great organization and also are proud of Dr. Crocker, who got "flooded" out of his planned appearance at the Valley Arc DS conference last spring, but consented to be in Grand Forks later last year.

MISSISSIPPI ELDERLY IN HOME CARE. Under an HCPA 1915b and Medicaid waiver, the State is providing more such meritorious services. An INSIDE MEDICAID MANAGED CARE (1-800-638-8437) article on pages 6 and 7 of V3 #5 describes some of the benefits, procedures, quality guides for such programs. It lists as a resource Help at Home's Joel Davis at 312-663-4244.

SCHOOL-TO-WORK REPORT. It seems expensive, but it is produced monthly by Business Publishers, Inc., 800-274-6737. The December Report reported that the President signed a compromise law that would increase funds for vocational education grants, JTPA Adult Training, employment and training demonstration programs, the National Skill Standards Board and education technology programs.

LIVING THIS LIFE. Johanna B. Redmann in the Fall Paralyzed Veterans of America's SHARINGS suggests doing these things:

Joining support group, volunteering for non-profit organizations or churches, working with animals - helping others. Most of all, don't be alone.

Come out of yourself and give of that special uniqueness you are. You are a one of a kind and you are special. There is a purpose in life for you. You have so much to share with others.

Take one thing at a time. Prioritize and complete your most urgent task rather than working on everything and completing nothing. Don't bite off more than you can chew.

Learn to accept what you cannot change. When problems are beyond your control, "roll with the punches" until they can be remedied. Keep in mind things will not always go your way.

Work off stress. Blow off steam physically by participating in activities such as swimming, running, walking. Be aware, however, that competitive physical activities (raquetball, tennis) may actually cause stress.

Get adequate sleep. Rest will enhance your ability to deal with stress. Good physical health is an integral part of mental health.

Schedule time for yourself. Leisure time is very important whether you work on a hobby or just daydream. Expand your interests and learn to enjoy yourself and your "free time."

Get involved. Feeling bored and lonely? Get out of the house and join in social activities Talking with others can help alleviate stress by taking your mind off you! Listening to a friend's concern often helps clarify and place your own problems in perspective.

Listen and be flexible. Relationships with other people, whether professional or personal, can be stress-producing. Try listening and being open-minded. Give in once in a while and try others' suggestions. As hard as it is to believe, you may not always be right.

Talk out your concerns. Talking with someone can help you see issues in a new way. If you are preoccupied with personal concerns, talk with friends, or family members. If the problems persist, consider some professional help or consultation.

NADS NEWS. I would like to think they would replace the editor Ann Jonaitis, when the time comes with someone of similar skills as they have done for the almost 26 years I have read their publication. But if you're interested in what a large support group can do (the oldest in the U.S.), send $15 to P. O. Box 4542, Oak Brook, IL 60522-4542. Dr. Wendy Nehring has an article in the January issue on "Early Menopause in Women with DS" which cites what is probably the best professional applicable English language journal in the world, the JOURNAL OF INTELLECTUAL DISABILITY RESEARCH for the statements that: "Premature aging in persons with DS is a research fact" and "....women with DS did experience the onset of menopause approximately four years earlier than most women." NADS NEWS is balanced and everyone interested in DS should have access to it. Susan Abrams has DS and is 24; she is the first person with DS to serve on the NADS board. She will present at the NADS conference at the Ramada Congress Hotel on 10-24-98. Get your reservation in as it has always been one of the best DS conferences on the continent. Congratulations, Susan. We hope to read more about you in the months ahead. This federal web site will direct you to the online home of the appropriate agency you seek.

ARC IDEA KIT. The Arc of the U.S. made available to state and local chapters a video and a set of questions and answers. You can send Arc (P. O. Box 1047, Arlington, TX 76010), a number 10 SASE and they will send you the Q & A list. Better yet, tell your state or local Arc that you will attend and assist if they put on a one-hour program on IDEA using the material referred to above.

PL 105-33. This is part of the Balanced Budget Agreement and relates to State Children's Health Insurance Program (SCHIP). It authorizes $24 billion over a 5-year period so states can expand Medicaid or use one of three plans according to the 11-24-97 MENTAL HEALTH NEWS ALERT (800-666-6380). The Coalition for Fairness in Mental Illness Coverage believes expanding Medicaid is generally the best option for kids with mental health problems. The ALERT says you can get a copy of the Coalition report by calling 202-682-6393.

JOHN STENGLE - Arc - PEOPLE FIRST. John has been the SD Arc Executive for more than a decade. I remember well his ascendency to that position. I also remember well his decision a few years ago to take People First as a partner. Robert and I attended the Annual Meeting of the SD Arc and People First last year in Pierre and we are looking forward to attending the convention this year in Huron (April 29 - May 1). John attended the People First party in mid-January in Aberdeen and we again had a good visit. After he echoed comments similar to those of Senator Daschle (page 1), John asked me where we get all of our material and I responded that most of it comes from friends. Only one other state holds joint meetings of Arc and People First. We look forward to seeing all of our People First and Arc friends at the Crossroads in Huron.

BOTH SSI AND SS DISABILITY? When I noted Senator Daschle's question at the end of the big paragraph (page 1) my first thoughts were why doesn't SSA send one check for people like Robert who draws from both funds. However, after reading a publication he enclosed (SSA Pub #05-10095) I realize these are two distinct programs and SSA probably manages them about as well as can be done. Also, an SSA letter dated 1-11-98 reported that SSA has found Robert's disability continuing. Since he now only works at the sheltered workshop (ATC), we weren't much concerned about the trial work period, but they considered various months over a five year period and found that he can't do substantial work. As a result he will continue to receive slightly more than $200 a month from SS Disability Insurance and somewhat more than that from SSI. As supported employment gains acceptance, more and more recipients of SSI will gain eligibility for SS Disability Insurance payments, but if all requirements are met in many cases it won't increase the total assistance received from the U.S. Government. There are substantial variances in disabilities and probably always will be, but the Government doesnt discriminate based on severity. I have always thought there are many exceptionalities, learning disabled, hearing/sight impaired and others drawing Government benefits for the disabled that served to restrict funds available for the most severely impaired. Robert and I think the present system apears fair and doesn't encourage jealousy or faked disability. However, vigilance by authorites is necessary to assure that non-disabled cheaters do not get on or remain on the dole. Robert knows from experience that if he can hold a job he will have more disposable income. As you might expect, the new SS Commissioner says in his report to Senator Daschle and other Congressional officials that SSA is properly reviewed.

     Instead of looking for 135,000 ineligible SSI recipients, now the SSA contends finding only 100,000 ineligible is more likely. Congress will have to determine if Commissioner Apfel is doing his job or has sold out to pressure. Personally, I would recommend that Congress authorize a bi-partisan fact finding consortium to recommend either that Mr. Apfel be replaced or commended. In any case, we will fairly soon have a new President (he can't seek another term), and Apfel's successor likely will give special attention to the situation.

DISABILITY RESOURCES CATALOG. Send card to Program Development Associates,5620 Business Avenue, Suite B, Cicero, NY 13039 for your copy advertising over 100 videos, CD-Roms, book and software relating to DS and other disabilities.

REGULATORS OF NEURONAL SURVIVAL. This is the first article furnished by Dr. K.E. Wisneiwski as indicated in her letter on Page 3. It comes from the new Springer-Verlag book edited by Golaburdo and Christen. The final sentences are: "The temporal and spatial patterns of Bel-2 and Bax induction in the developing normal human brain indicate that both of these proteins, and especially Bax, may be involved not only in PCD (programmed cell death) but also in terminal differentiation of neurons in the human brain. Dissimilar topography and temporal distribution of these proteins in the normal control and DS brain indicate that PCD may be involved in the pathogenesis of DS brain abnormalit ies.

AD, NEUROPATHOLOGY & DEMENTIA IN DS. The discrepancy between the presumed presence of AD in type neuropathological changes in adults with DS and undetectable dementia may go on for 35 years. Possible reasons are provided including the existence of two subclasses of B-Amyloid plaques.

AGING AND AD IN DS. This article by three senior researchers on the subject can be found in MENTAL RETARDATION AND DEVELOPMENTAL DISABILITIES RESEARCH REVIEWS (C:73-79(1996)). You can ask for an inter-library loan or ask for reprints at 1050 Forest Hill Road, Staten Island, NY 10314. The first published scientific indications come from Fraser & Mitchell in 1876. The article provides the entire history of the research and likely will lead to more definitive findings. This and the preceding two articles are the ones listed on Dr. Wisniewski's leter of January 5, 1998; she indicates in a later letter that she and Henry also think of me fondly as a friend. It is possible that I might refer to friends who don't necessarily consider me a friend.

ULTRA DS MAGAZINE +. You probably have seen magazines printed in the best quality glossy stock with lots of sharp and appropriate pictures. The Utah DS Foundation newsletter ADVOCATE, is such a super magazine. Amy Moore, who is 2-½ years older than Robert (25), is the editor, (P. O. Box 753, Farmington, UT 84025-0753). Family UDSF memberships are $20, but you could ask Amy if a smaller contribution will get you on their mailing list. One of the fascinating articles in V. 14 Issue 4 tells of Camp Among Stars which is being developed 75 miles south of Jackson Hole and 150 miles south of Yellowstone; it will provide 432 families a chance to attend each summer. It also tells of the father of four year old David, Frank Peczuh (pronounced PZ) who does the printing and puts TLC into every issue. There are also pictures and stories of high school students with DS honored by their school. And, there is a beautiful picture and story of the UDSF '98 calendar, UTAH'S NATURAL WONDERS, which is available for only $10 plus shipping and handling. UDSF is also seeking original artwork depicting people with DS for greeting cards.

EVERYBODY'S CHILDREN. That's the caption for the 12-5-97 TIME article on page 135 by Colin Powell. He starts with a discussion of the two children referred to by the ghost of Christmas Present named "Ignorance" and "Want" of which the ghost said "Ignorance" foretold doom unless it was eliminated. The retired general is the chairman of the Alliance for Youth. He closes his treatise with: "It behooves us to ask ourselves honestly if we are doing enough for man and children. If not, Ignorance and Want will dog our steps and dampen our holiday cheer until we do.

USPS. We titled our article on them in the Christms issue "Direct Mail" (Call 1-800-THE USPS X2043 for your free Priority Packet). Now they have a free kit available on Global Priority mail (call above number but ask for X2064) or you can send a postcard to P. O. Box 2484 Warminster, PA 18974-9801 and ask for either a consumer or small business kit. Our local "Hub Area Postal Customer Advisory Council" commended all USPS offices and employees for performing superior service in a courteous manner.

FIBROMYALGIA. We will be sending a copy of this publication free to all members of the Mid N/A Continent Chapter. Our dues are $5 and should be sent to the address on the masthead. This won't make you an individual member of the Fibromyalgia Alliance of America (P. O. Box 21990, Columbus, OH 43221-0990) or M. E. Canada (400-246 Queen St., Ottawa Ont KIP584), but we will extract from or comment on their publications and we encourage everyone to join one or both. We will continue to note progress with Chronic Fatigue. For instance, the November MESSENGER'S lead article titled "Mind? Body? Both?" says patients might benefit most if doctors would focus on just relieving symptoms. The next article told of a fund raising swim across Loch Lommand. It is followed by a long article with recommended replies to frequent questions by the author of an Australian book both on ME/CPS available for $30 from P. O. Box 868, Leichhardt, NSW, Australia 2040. An article is also reported from the Connecticut CFIDS Association, 171 Noubuc Avenue, East Hartford, CT 06118. One of the most valuable articles is "Research News" which includes four abstracts of articles in professional journals. "Legal Helpline" was largely devoted to a conference in Nova Scotia. "Employment Insurance/Sickness Benefits" is peculiar to Canadians. The Editor, John Warren, put together a section titled "Newsbits." There are also book reviews and meeting notices. There is "A Creed to Live By" which we will either reprint or send to subscribers who send a SASE. There are both supportive and negative comments in published letters. The author of FIBROMYALGIA: A COMPREHENSIVE APPROACH submited the article "Fibromyalgia: The Holiday Needn't be a Pain." V.2 #3 of THE FIBROMYALGIA TIMES reports on the August conference in Columbus, Ohio. Much of the journal is devoted to articles by Daniel Clauw, MD. Sharon Clark, FNP, PHD of the Oregon Health Sciences University contributed the article "Strengthening the Back Muscles." Forthcoming conferences May 23 - 25 at NY Hilton and September 19-20 at the Portland Convention Center were discussed. Carol Burckhardt, RN PH.D. has an article on herbs and 7 videos from the Columbus, OH conference are described ($30 each or $165 for all 7). With our initial chapter membership, the Alliance enclosed documents worth the $25 membership fee by themselves.

FIBROMYALGIA/CHRONIC FATIGUE. From the University of Tennessee College of Medicine staff R. E. Morrison, M.D. and N.S. Fuller, M.D. have an article titled "Chronic Fatigue Syndrome" in the January POSTGRADUATE MEDICINE, which contains these two sentences: "Since chronic fatigue syndrome is closely related to fibromyalgia, many patients may benefit from the use of low-dose tricyclic anti-depressents, which help sleep distubances commonly seen with these disorders. Small doses of seratonin reuptake inhibitors may also be helpful in some patients." Physicians can correspond with Dr. Morrison at the Department of Internal Medicine, 842 Jefferson Ave., Room A605, Memphis, TN 38103. The British Medical Journal reports on a study which says mild to moderate aerobic exercise, such as walking, may help people with chronic fatigue feel better. Start with 5 to 15 minutes and gradually increase activity to about 30 minutes per day.

PUBLIC HEALTH REPORTS. This bimonthly costs only $15 per year. It is the journal of the U. S. Public Health Service (JFK Building, Room 1855, Boston, MA 02203).

DS AND THE WRITTEN WORD. That's the title on the cover of the winter EXCEPTIONAL CHILDREN, but actually the title precedes the captioned words with ten more that author C. Kliewer hoped would be worthwhile. He followed 10 students with DS for 2 years. As I suspected from the convoluted academic title, the article went around and around. Two of the early writers with DS, Paul Scott and Nigel Hunt, were discussed and though facts weren't provided I suspect they did their writing while Kliewer was still in school. Anyhow, he concludes the article with..."teachers have turned written language into a path students might choose to solve problems, accomplish learning goals, express emotions, empathize with peers, gather and convey information, form friendships, and resolve conflicts." You can correspond with Professor Kliewer, 150 A S.E.C., University of N. Iowa, Cedar Falls, IA 50614 or by Email at

JOBS PLUS (A Corporate Initiative to Employ 2,500). Pizza Hut Job Plus has announced a national goal to employ 2,500 persons with disabilities. Pizza Hut is specifically interested in recruiting individuals registered with their state vocational rehabilitation agency and or SSI/SSDI recipients.
     Integrated Resources Institute (IRI) a non-profit corporation is assisting Pizza Hut with its national employment initiative.
     To access IRI's free job development assistance, contact them toll free at (800) 704-5293, M-F 8:30 a.m. - 4:30 p.m. Pacific Coast Time.
     One of our friends, Kirk Opp, has been working for he Aberdeen 6th Avenue S Pizza Hut for several years. However, the holding company has announced it plans to close several hundred Pizza Huts so you had better call ASAP if you want the prognosis for a specific Pizza Hut in your area.

AARP BULLETIN. If you are 50 or more, join AARP and get their AARP/NRTA Bulletin (unless you are a retired educator and then join NRTA which is a co-owner of this largest organization in the U.S. of its kind). "Its kind" refers to experienced, intelligent seniors and if you aren't one we surely hope you will become one. It costs only $8 for a year or $20 for 3 years. Much of the information (such as the 4 page supplement in January on the new tax laws is neutral and worthwhile for all "planners" regardless of age; 602 E St. NW, Washington, DC 20049.

BIOMEDICAL CONCERNS IN PERSONS WITH DS. We "heralded" this book before it was available as we have done with other books many times since 1972. One of our local libraries (Presentation College) now shelves it and I will record the acquisitions details here if I can get them. Reviewing the book now reveals some of it's values for any library and makes me consider ways that concerned people not willing/able to donate a book such as this could pay a portion of the costs that will make them available through libraries. We solicit suggestions as to how this can be done. Sig Pueschel and daughter Jeanette, are the co-authors; since Sig's son, Chris, who has DS and is now an adult, and both authors have had several years experience at the Child Development Center of the Rhode Island Hospital, the facts presented can be relied on. Brookes published it (P. O. Box 10624, Baltimore, MD 21285-0624) in 1992 and they do only quality work.

JACK AND JOAN MEEKS. They are "seniors" too and must realize the cost and work required to communicate and absorb information relating to subjects (primarily DS) that we write about. Anyhow, we have been thankful that they truly are our partners. They sent us the winter '98 SPECIAL DELIVERY which is the publication of the DS Association of Jacksonville, FL. We don't have the subscription cost, but you could send $5 and they surely send you the appropriate number of copies (7932 Hunters Grove Road, Jacksonville, FL 32256). It tells about the DS Center at Hope Haven available for any child with DS at little or no cost. Appointments are made approximately 8 weeks in advance with education, medical, behavioral development, speech/communication, and fine/gross motor development tailored to the child's needs (4600 Beach Blvd., Jacksonville, FL 32207). On June 8 there will be a conference on DS there so if you might attend call Robyn Cunningham now at 904-721-7936 as reservations are required. It seems to me that $1 each from half a dozen mothers from that area in 1972 was enough to get me to continue the DS newsletter I had started. In any case, they started early and have worked hard. Seriously consider sending them $5.

DAKOTA LINK/DAKOTA WORKS/TRANSITION NEWS. We got support when they subscribed to our publication a couple of years ago, but that didn't mandate this endorsement. We think their Winter '98 edition of this free quarterly is the best ever and we encourage you to ask Janet Werner, 1925 Plaza Blvd. Rapid City, SD 57702 to send you a copy and put you on their mailing list. It is a Black Hills Special Services publication and they also do only quality work.

SSI REVIEW/CONFERENCES/MUCH MORE. Both Robert and I have been AAMR members for years and we recommend the organization to all; particularly doers concerned with MR. Robert's AAMR NEWS & NOTES (V11 #D provides details on a conference March 27 - 29 on the Mediterranean island of Cyprus. Among the many sponsors are AAMR and NDSC. For more information contact Demetrius Vassileas, Ed. O, Box 131 Minot State University, 500 University Ave. W, Minot, ND 58707 and for travel 1-800-221-8899. The 122nd Annual AAMR meeting will be in San Diego May 26 - 30. For a program and information call 1-800-424-3688. Robert's older brother, Sam, just took a group of students to San Diego and say it and surrounding areas are clean and safe (check with Frank Murphy of NDSC if you attend either conference and are concerned with DS). See Senator Daschle's center paragraph on page 1 of our publication for the basic information on SSI as well as Page 8, but if you want a complete report, read Doreen Croser's report in their NEWS & NOTES and send both Daschle and Croser any suggestions you have for improving SSI.

DS/UNUSUAL COMPLICATIONS. Glenn Vatter (3124 Hanneberry Road, Jamesville, NY 13078-9640) is helping establish a web site devoted to the captioned subject at or Email: MATCHMAKER reports he has a teen aged son diagnosed with DS and Autism. MATCHMAKER (150 Custer Ct., Green Bay, WI 54301-1243) also lists as a helpful web site:

COST OF SUBSCRIPTIONS. To get or keep on the mailing list, send $5 to the address on the masthead.

Northern State UniversityU. S. Postage Paid
School of Education, Box 850Aberdeen, SD 57401
1200 S. Jay StreetPermit No. 77
Aberdeen, SD 57401-7198 

  Revised: April 24, 2004.