People with Special Needs Down Syndrome Report


VOL. 16 #1SSN0731- 566XMarch 1996

EDUCATING RAFAEL. The 1-17-96 EDUCATION WEEK contains this article on DS/INCLUSION, plus OBERTI AND THE LAW (the case is one of ½ dozen on inclusion). The case indicates schools have the burden to prove why a student should not be included in a regular classroom. The Oberti's first took the school to court five years earlier, but lost. The Appeals judge in '92 said: "Inclusion is a right, not a privilege for a select few." The author (Lynn Schnaiberg) says the two sides to the case are speaking in different languages: the school saw Rafael as half-empty, but his parents saw him as half-full. In concluding OBERTI AND THE LAW Schnaiberg says: "Regardless of where educators stand philosophically on inclusion, many disability-rights advocates have made the link between inclusion and racial desegregation. And they warn that if schools don't move fast enough to better integrate their disabled children, the courts may step in to do the job for them."

DS CORTICAL NEURON DEGENERATION & APOPTOSIS. See Page 776 of the 21/28 December '95 NATURE for this report by the Harvard Department of Neurology (Bruce Yanker, Enders 260, 300 Longwood Ave., Boston, MA 02115). In the final paragraph the authors state that "increased generation of reactive oxygen species (ROS) may contribute to abnormal brain developmental and mental retardation in DS." Their final sentence says, "if there is in vivo confirmation then the neuro protective effects of antioxidants may provide an important therapeutic approach to mental retardation and the prevention of Alzheimer's disease in DS individuals."

ILLITERACY AND CRIME. A recent study by the U. S. Department of Justice reveals reading failure is a major cause of delinquency. Frustration is what actually leads to delinquency and perhaps the "whole language" teaching method is what leads to reading failure, which leads to the frustration. In '93 Justice found that 21 million Americans can't read at all, 45 million are marginally illiterate and one-fifth of all high school graduates can't read their diplomas. Developmentally disabled people are not very literate and that may be the reason some become part of the 60% of illiterate prison inmates, according to an article in the 1-12-96 INVESTOR'S BUSINESS DAILY by Matthew Robinson. He quotes Harvard Education Professor Jeanne Chall as saying whole language is less effective than a developmental approach to reading and least effective for those who tend to be at risk for learning to read. Special educators should agree on the best method of teaching reading to their students and attempt to standardize that approach. Many now contend that teaching phonics with instruction techniques based on scientific research will help right the problem and others believe otherwise. Robert's older sister, Margie, says:
     "I found the article to be interesting. The schools I work at are very whole language oriented. I tend to think it is best to help each child in the manner they respond best to, and am not in favor of overall approaches. It's too naive to assume we all learn best the same way. I will make copies and put them in the teachers' lounge, which may stimulate some discussion."
     Personally, I (GJ) think the trend to forcing developmentally disabled students to attend school for years with non-disabled students sometimes leads to a frustrating situation in which they are stigmatized as failures leading such children to feel stupid and not able to achieve anything worthwhile (Hilde Masse, School Psychiatrist and E.E. Gagne paraphrased). Gagne in the JOURNAL OF SPECIAL EDUCATION says: "The longer learning disabled students stay in school, the more likely they are to become involved with police."


WE ARE AMERICA...The heart of a world seeking freedom and peace.
We are the east and the west, the north and the south - one people embracing many.
We are a legacy of courage with a destiny for greatness. We are history and prophecy, liberty and home, refuge and vision.

So we lift up our light as a beacon of hope, with this prayer of our God and Creator: Make us a people who care and who comfort. Let us reach out a welcoming hand to the homeless, the helpless, the hurting, the hungry. Let us fulfill God's great plan for our land. Let our gift to the nations be love. By: B. J. Hoff
     The above message has as much impact on people with special needs/irregularities as anybody else. Many would change the last word, but not Robert! Everyone in our family is proud to be an American and proud of people everywhere who try to make this a better world.
     Robert and his family recently watched the North Dakota Superintendent of Education present Robert's oldest brother, Sam, with the Martin Luther King Educator of the Year Award.

EMILY PERL KINGSLEY. You can see other references to her in this issue. In a recent letter she says: "Keep up the (very) good work. We love receiving the newsletter--so packed with goodies and information." She and her husband and their son, Jason, have done much for the DS cause for a couple of decades. Frequently she is available Tuesday nights from 9 to 11 EST on America OnLine for DS Chats. She says there are other chats on babies, inclusion, etc., and another for young folks who have DS to communicate with each other (Contact Tim or Cindy Casten, 169 Sherwood Road, Bridgeport, WV 26330) or ccasten@TIDALWAVE.NET.
     COUNT US IN: GROWING UP WITH DOWN SYNDROME by Jason Kingsley and Mitchell Levitz can be obtained by calling 800-242-6657 or 800-944-READ (Barnes & Noble); the owner of B&N has a daughter with DS. Jason is in his second year at Maplebrook School in Amenia, NY (he is the first student there with DS) and he works part time with the local Head Start.
     Parents of children with DS should continually stimulate them and provide additional training and education, which is what the Kingsleys have done. Emily says: "The most important elements of Jason's development were (1) high expectations that continually stretched and challenged him and (2) a myriad of opportunities to learn, try, risk, grow and experience as much as possible. We took him everywhere, showed him everything, read to him, played games with him, played music for him, talked to him constantly, insisted that school programs were responsive to his needs, etc., etc. Those things don't take money. We made sure that life was fun and interesting for him and he soaked it up like a thirsty sponge. Expectations and opportunities are the key."

DEINSTITUTIONALIZATION? Most agree this has been a beneficial endeavor, but a recent national article by Dr. Sally Satel (visiting faculty at the University of Pennsylvania and lecturer at Yale School of Medicine) identifies several retarded, addicted, mentally ill people who she says may be a drain on taxpayers and create risks to communities. She says: "Yet, although its cheaper and more humane to treat most people outside a hospital, even the best outpatient programs aren't enough for individuals who are so psychotic or persistently intoxicated that they don't even know they need help. For some mentally ill people, compulsory care is absolutely necessary."
     I (GJ) recognize that by lumping together varied problems and individuals actual facts become murky, but generally it seems that deinstitutionalization's excesses may make the cost unbearable although generally mankind advances with intelligent humanitarian deinstitutionalization.

DOWN SYNDROME. The sub-title of this '95 Wiley-Liss book 1605 3rd Avenue, New York, NY 10158-0012) is Living and Learning in the Community. The book is largely the proceedings of an International DS Conference held in '95, but each section is preceded by a commentary written by a young adult with DS. Call your librarian or promoter of the conference, NDSS ( 1-800-221-4602) for availability information. If you buy it, I think you will agree with me (GJ) that the initial article by Emily Kingsley, titled "A Vision of the Future" is worth the price. The article by the English writer, Sue Buckley, on reading and writing was also of great interest to me. If you have concern about DS you will find that books like this present the most current factual material on the subject.

HEART DISEASE IN PERSONS WITH DS. We haven't received this new book from Brookes yet so call 800-838-3775 and ask them to send you a copy on approval and you will be able to compare our review in our next issue with the book in hand. It contains previously unavailable information and it includes:

"a review and evaluation of 100 post-mortem examinations with findings displayed in easy-to-read tables."

"a 10-year study of close to 500 children with Down syndrome and their cardiac problems.

"the surgical results of more than 150 patients with Down syndrome and congenital heart disease."

It is edited by two medical doctors who are well known in their field: Sig Pueschel and Bruno Marino.

SCREENING FOR DS. To get information about this '94 Cambridge book, write 40 West 20th Street, New York, NY 10011-4211. The book doesn't take a balanced view on the value of people with DS vs. the negatives, therefore, I (GJ) recommend that anyone considering screening first tell NDSC and NDSS and ask them if it is a good idea and if not, why not.

AP ARTICLE ABOUT HIGH SCHOOL ATHLETE WITH DS. Some readers were dismayed to read the article, but I (GJ) think it sounded factual. The line between support and discrimination is not clear, but I suspect 16 year old Luke Zimmerman enjoyed his football team experience with the Beverly Hills High School. He probably wasn't as capable as other football team mates but the coach and quarterback were quoted as saying positive things about him, even though he never actually played in a game. I frequently tease Robert although I intend to cease doing that as he is his own man and we can joke about much without leaving any doubt as to his capabilities; Robert says a little teasing is OK and it was great that Luke actually got in a game even though the two plays were "kneel downs" to run out the clock.

BOOKS ON DS. The current issue of BOOKS IN PRINT lists the many books on DS:

DOWN'S SYNDROME: Children Growing Up - Janet Carr Cambridge Univ. Press
SCREENING FOR DS: Grudzinslas Cambridge University Press
     Ask your librarian to get any that might interest you through Inter-Library Loan (ILL) or the librarian will assist you in getting addresses and phone numbers for the publishers. Most publishers will send you desired books on approval.

NORTHERN STATE UNIVERSITY. We are pleased to report that even though Associate Professor Emeritus Lois Sollie is no longer on the staff, NSU will continue to publish this newsletter. Dr. Paul Deputy, Interim Dean of the Department of Education will continue as our NSU Coordinator. Hopefully, in the future other NSU staff members will take an active role with the paper.

DOWN SYNDROME ASSOCIATION OF WISCONSIN (DSAW). Their newsletter announced that a new clinic for people with DS will open October 1. A member of the DSAW Board (Dr. Mickey Hirn) and VP of the Board (David Smith, MD) received a grant that aided in the establishment of the clinic. Dr. Smith is a member of the DS Medical Interest Group, which has been instrumental in coordinating DS clinics throughout the world. I (GJ) gave Mary Coleman, M.D., credit for initiating and promoting such clinics; Robert was part of her clinic and a subject in one of her three-year double-blind DS research projects. Another "DS pioneer" is John Opitz, M.D. who was instrumental in making people in Wisconsin better informed about DS.
     In recognition of those others of similar mind and heart, we are sending a free copy to all the DS Medical Interest Groups throughout the world.
     To join DSAW and get on their mailing list, send $10 to P. 0. Box 23384, Milwaukee, WI 53223; you will be pleased you did!

GROWTH HORMONE HOPE FOR INFANTS. That's the headline in one of the papers we subscribe to. If you have been reading our publication for several years, you know we were one of the first publications to reveal the facts on human growth hormones for infants and children with DS. For several prior years, I (GJ) held back information on research relating to growth hormones because at the time the source was pituitary glands from cadavers and there was a distinct safety factor. When the man-made growth hormone was approved, it seemed likely to me that it would be a matter of time before "little" people, including those with DS, would be able to acquire extra height, which would make them less conspicuous and subject to negative discrimination. We will send subscribers who request one, a copy of our issue with an article on research on children with DS using the hormone.
     Now, back to the article captioned above which reports the growth hormone (rPST) increased the size of all pig fetuses, but helped the potential runts the most. One University of Missouri animal scientist William Lamberson is quoted as saying, "We also think this basic research will be useful to scientists of human medicine concerned with low birth weight infants. Pig placentas are similar to humans, so we think a therapy that works in pigs can lead scientists to one that works in humans."

NDSS AFFILIATE NEWS. There have been several NDSS excellent publications and this new one promises to be more of the same. NDSS will also run a one-day conference for affiliates June 26, ahead of their national conference June 27-29, in Phoenix. Call Jeanne at NDSS (800-221-4602) for details.

MENTAL RETARDATION (MR). This is the name of a section in the '76 Crowell book edited by S.M. Miller titled SYMPTOMS. Some extracts follow:
     "Mental retardation is not a single disorder or even a series of disorders; it is rather a description of intellectual functioning that is significantly below normal. This subnormality usually involves aspects of maturation (developmental stages such as sitting up, crawling, walking, and talking); learning (concepts, numbers, reading, school performance); and social adjustment (employment, independence, community living). In terms of IQ (which changes during a person's lifetime and also measures only certain types of intelligence), retardation is associated with an IQ score of less than 75. Approximately 3 percent of all American children will be labeled "mentally retarded" at some time during their lives. Unfortunately, this label carries negative connotations that are not accurate, and it should be removed entirely from our vocabulary."
     Robert agrees these twenty years later, so if you agree let us know and maybe we can remove it. We believe we can assure that U.S. Senator Tom Daschle (who is one of our most generous, compassionate and powerful subscribers) will read the above and if the professionals concerned with terminology relating to disabling conditions can't come up with words to describe the various components now encompassed by the stigmatic MR term, he might endorse legislation that will prohibit the use of Federal funds for programs or services purporting to just describe various conditions or individuals as having or being mentally retarded. The author of this book and the twenty respected physicians on its editorial board haven't been able to implement the underlined proposed remedy above.

The Section concludes with:

     "Outlook: Extremely promising. The great majority of retarded children, given the right schooling and opportunity, can become productive, self-supporting adults. Many others, although they may never be completely independent can lead happy, useful lives and work under protected conditions. Many children once thought to be hopeless, incurable cases are being helped and are helping themselves to learn, grow, develop, and function. Research and treatment methods, especially in the educational realm, have improved phenomenally in the last decade and the outlook is good."

     One tactic I (GJ) used in achieving the substitution of Down's Syndrome for the former stigmatic term was to meet with Library of Congress officials and get them to agree to change their cataloging term; within a few years the deed was done. Once a satisfactory substitute for mental retardation can be agreed to I'm sure that same tactic can be employed.

MENTAL RETARDATION. Robert objects to this term, but it reminds me (GJ) of the power of inertia and that saddens me more than angers me as the professionals helping the people so stigmatically labeled should be able to agree to a more positive term. The journal so titled always contains numerous articles from professionals relating to policies, practices, and perspectives. The December '95 issue contains the '95 Presidential Address of the current AAMR Proxy, Karen Middendorf, who in a partial personal response to her question "What do we need to change?" puts in parenthesis (Our name comes to mind!!). In going over the index to that issue, Robert asked that I draft something on the review of a book edited by David Goode on QUALITY OF LIFE FOR PERSONS WITH DISABILITIES. The reviewer suggests the book indicates the developed countries with social welfare systems believe such quality relates to freedom of choice and autonomy in making life choices such as where to live, where to work, etc. The reviewer (Eileen Furey) asks the provocative question, "Why should people with disabilities have to settle for anything less than people without disabilities?" Personally, I (GJ) see little commonality in life and for example, do not aspire to all that Bill Gates (richest U.S. citizen) seems able to attain. Robert has this to say: "I want to make my own choices (considering comments from family, friends, and the ATC). I want to help other people and find (and keep) a good job. I have a good life and expect it to get better."
     Call 800-424-3688 for AAMR membership, conference, and publication information; Robert and I endorse the organization and ask that all members interested in DS ask about the DS Special Interest Group as it (like other SIGs) is free as is the first division that you prefer to affiliate with.

IRREGULARITY. I (GJ) have always felt compassion for those who never seem to excel, many of whom are at the bottom of the pecking order (since we kept chickens as a child I saw how bloody and brutal that position in a pecking order could be). From then on I have been able to see daily how similar humans are to animals in seeking whipping boys and enforcing and applying damage to those least able to resist. Fortunately, when Robert was born great progress had been made, but we were still encouraged to not take him home and not much medical help was available for those "like Robert" at the bottom of the order. When we discussed Robert's inability as a baby to take nourishment the surgeon informed us that no corrective operation would occur without our request (giving us the life or death decision). I was repelled by the term used by society to identify the cause of his problems and realized that it had put him near the bottom of the human pecking order. I had started a newsletter even before we got the results of his karyotype (the night Robert came home from the hospital I got in a couple of hours of literature research at the U.S. Library of Medicine). I quit using the former stigmatic term and used instead a new term honoring the syndrome's first identifier (I believe I was the first to use the acronym DS). Anyhow, the "term" fight had been joined. A little later the battle to modernize the name of the Association of Retarded Children was begun, but the best I could do at the '73 ARC national meeting was join with a few others in getting the adjective "Children" changed to "Citizens." I did better on DS by securing support from two U.S. Senators (who had children with DS), along with many others in getting the U.S. Library of Congress to substitute Down's Syndrome for the former stigmatic cataloging term.
     I supported use of the general term "handicapped" by the U.S. Government for the term "disabled" (which advocates of crippled people endorsed). "Disabled" seems so hopeless and negative. "Irregularity" is the noun of the verb irregular and would serve better than "disability." Much, if not all in the world is unique even though it may be irregular in one or more aspect, the identification as being inferior or superior is strictly based on the perception of the identifier.
     We will continue to avoid using alternative terms for DS as that irregularity involves various physical, mind and emotional irregularities, all of which are not uniform for all with DS. Our WEBSTER'S NEW WORLD THESAURUS lists singularity, uniqueness, deviation, allowance, nonconformity and rarity (among others) following irregularity.
     Robert particularly dislikes the term mental retardation. Retardation is not a progressive or uplifting term-it is negative and stigmatic; it also is inexact as society knows little of the parameters of the mind. Intelligence quotients probably tell more of the degree of literacy than anything else! When we use MR or the full term it will usually relate to the Journal of the official name of AAMR (publisher of MENTAL RETARDATION). Robert and I were both members of what is now called AAMR before the offensive term in the name squeaked by in a vote. All people with irregularities (including those who are cognitively irregular) are people with special needs.

SPECIAL NEEDS. "If you have a child who has special needs due to a disability or chronic condition, your pediatrician can help you get assistance. Together, you'll be able to plot a strategy for seeing that his physical, medical and educational needs are addressed. When it comes to meeting his day-to-day emotional needs, however, your influence will be vitally important. Let your child know that you and the rest of the family members accept him for who he is. Encourage him to make the best of his talents and abilities, and show him how to adopt a realistic but positive outlook on life. Always treat him as you would any beloved child."
     The above was taken from the '95 ILLUSTRATED BOOK OF CHILD CARE. If you have a preteen or younger child you probably can buy this Hearst book or obtain one through ILL (call your librarian). It includes 750 pleasing color illustrations and treats clearly ailments and emergency health conditions.

U. S. BLOOD LEAD LEVELS. Twenty-three states, representing 64% of the U. S. population, report elevated blood lead levels to the CDC according to the 10-27-95 MMWR (Mail Stop C-08, CDC 1600 Clifton Road, NE, Atlanta, GA 30333 or phone 404-232-4555). Rhode Island has mandated reporting BLL for children under 6, the same issue of MMWR says.

U. S. COSTS OF BIRTH DEFECTS. According to the MMWR of 9-22-95. For '92 the estimated cost of 18 conditions was eight billion including: DS $451,000; cerebral palsy $503,000; and spina bifida $294,000. Lost productivity due to death during the first year was a component. Conditions with the highest incidence rates are cleft lip or palate, cerebral palsy, DS, and urinary obstruction. DS was charged with the greatest indirect costs whereas cerebral palsy (CP) had the greatest direct costs; DS was second for direct costs and CP was second for indirect costs. Truncus arteriovsus has the highest cost per new case ($505,000) followed by cerebral palsy ($503,000) and DS ($451,000).

PRESIDENTS COMMITTEE ON MENTAL RETARDATION. Robert got a fat packet of information from PCMR and they have added him to their mailing list. They included their first issue of SPOTLIGHT, which is a name we used a few years after we turned DOWN SYNDROME NEWS over to NDSC and they also used the exact logo we used (not the logo we used designed by Martha Perske while our paper was published by the Valley Arc). Anyhow, it's a good issue but I (GJ) dislike the use of public funds for political purposes and that is what I believe the front page article titled "PCMR: Caution with KIDS SSI" primarily does; however, the statements that "Children's SSI has been a singular success at reducing admission of children with mental retardation to state institutions" and "current estimates suggest that 43% of the children who now receive SSI have mental retardation" are not so construed. The chairperson of the Mission & Public Awareness Subcommittee has Down syndrome and naturally we are appreciative of HHS Secretary Shalala for appointing her regardless other political affiliation. When Robert was born in '72 I got significant support from PCMR and the Executive became a friend. PCMR is 30 years old. To get on the mailing list write to PCMR. SPOTLIGHT, 330 Independence Ave, S.W., Room 5325, Washington, DC 20207-0001 or E-mail Also, ask for their free publications list.

PACER CENTER (see above article). Recently, we received a Non-profit mailing from the PACER center slating that we should ask our U.S. Congressional delegation to authorize IDEA now without Amendments. Those last two words are inappropriate! I frequently tell my Congressional delegation my opinion, but they represent everyone in the State and properly make up their own minds. I hope they seek the views of their constituents, and don't just oppose amendments to programs just because things are better now than they once were. We got where are because sometime in the past someone recognized there might be a better way to do what had previously been done. Don't be part of a "see, hear, speak no evil" political realm or change the primary goals of causes you believe in or make them secondary to a particular political party or approach. Help the Democratic or Republican philosophies if you believe wholeheartedly in either to the exclusion of other philosophies that exist or might exist in the future, but don't lose sight of the primary goals you believe will benefit society. If you believe IDEA is perfect, tell PACER (4826 Chicago Ave., S., Minneapolis, MN 55417-1098). I (GJ) am an optimist and believe everything can get better and be improved.

FAE. It isn't only a mild form of fetal alcohol syndrome (which occurs in one or two per 1000 births). FAE based only on facial abnormalities led to diagnosis of children with DS and neurofibromatosis as having FAE instead (see p. 314 SCIENCE NEWS, 11-11-95).

ADVOCATING FOR THE RIGHTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES (Arc). This organization has changed names many times and I (GJ) applaud it for doing so while avoiding major catastrophes comparable to the division that followed when it moved from New York to Texas. Perhaps due to the spokespeople for one-third of their clientele who demanded that more effort be given to the scientific study of genetic, general health and behavior of those with DS whose DNA make up clearly indicated that physically the people with DS differed from others, the general Arc membership demanded that the over generalization non-specific term "Retarded" be eliminated from the name of the organization. Anyhow, I have remained a member for several decades and was quite active for almost 25 years; however, Robert now is more active than I. Many parents of children with DS have been instrumental over the years in holding the Arc together, but there are also many who contend it hasn't served well people with DS. Arc has welcomed and appreciated people with DS regardless of whether they are Arc members. We recommend that everyone concerned with DS consider getting active in their local Arc. However, I contend that if there is a support group for the specific condition that concerns someone they should first affiliate with the closest such group.

SLEEP APNEA. This is one of our on-going subjects. Kristyna M. Hartse, Ph.D. (who is Director of the Sleep Disorders Center at the School of Medicine, Department of Psychiatry and Human Behavior, St. Louis University Health Sciences Center, 4588 Parkview Place, St. Louis, MO 63110) has agreed to listen to a tape of Robert's snoring. There are accredited sleep disorders centers in Sioux Falls and Rapid City but a trip to either involves about 400 miles. We are very appreciative of Dr. Hartse's willingness to accommodate us. One of Robert's friends, Art Hettinger, who also has DS, recently was diagnosed as having sleep apnea and will have to use a continuous positive airway pressure (CPAP) machine all night from now on. If prescribed, the machines can usually be rented for $100 plus per month or purchased for ten or more times the monthly figure. They are health enhancers and could be life savers for some persons with DS. We hope to report more on this subject in our next issue.

INCLUSION/MAINSTREAMING. An official of IDEA (Helen B.) supports mainstreaming special-needs children, but says teachers often are stretched to the limit and are not given the materials or aides necessary to complete all the tasks expected of them. Helen fears some teachers will simply give up and leave the profession if the situation doesn't change. I (GJ) have been worried about the likely failure of the achievement of the hope of parents of such children "that just being in a age appropriate grade in a nearby school will result in elimination or minimization of the problems." These children need loving and competent teachers and most will get them, but forcing teachers to accept such students without proper tools might lead to more problems for not only these children, but all the others too. Why not require that teachers be asked during the selection process if they are willing to accept one or more special-needs students? Everyone would then be relatively happy during this transition period when the evidence is being examined to identify students and situations that require some segregated settings to provide appropriate and the least restrictive education for all students.

ON-GOING TOPICS/EARLY INTERVENTION. Professor Wolfensberger of Syracuse suggested we prepare a systematic inventory of all the mythologies about DS and listed: (1) extraordinary sense of rhythm, (2) early death, and (3) early contraction of Alzheimer's disease. We generally agree with these but hope other readers can suggest other "on-going" topics and/or provide pros or cons relating to the ones identified. On-going topics will be a section in each issue from now on. One mythology I (GJ) have reported on for twenty years is that early intervention has no lasting value; there no longer are many "pros" but a recent reported con at the last Advancement of Science meeting by Craig Rooney for the University of Alabama in relation to infants likely to have learning difficulties or development disabilities/delay was that such programs started early in life can lead to increased I.Q. Please pass along views or information on the above on-going topics or provide others we can list.

HOUSING/BOARD & ROOM. We have had frequent articles on living arrangements for disabled people, but if the 20 year old Mosby book, MENTAL RETARDATION hadn't discussed the very attractive option of "boarding houses" we might not have mentioned it. It says boarding houses allow a great amount of independence and at the same time relieves residents of much responsibility. They are free to come as they please but don't have to worry about meal preparation, payment of utilities or building and yard maintenance. Please share your views on the captioned subjects with all subscribers. I (GJ) suspect that availability of transportation has more impact on satisfactory housing than has been recognized.

WRONG, RIGHTED! We mentioned in our last issue that a lady (Jensen) in California was being denied a transplant because she has DS and not likely to profit from this normal life sustaining procedure. It has since been done and we pray she will survive and that "society" will continue to demand good treatment for all of God's creations.

VACUUMING. Robert has had a chance to vacuum, along with friends from the ATC, at the only large general department store (Herberger's) in town. The others do this two hours daily for the minimum wage and Robert hopes he will be selected to join them. In any case, we wish to thank all employers that try (or actually hire) disabled people who can do many jobs as well or better than others. Another important but of short duration job Robert has is to lead and oversee regular exercising of his father (GJ).

U.S. STATE-SPECIFIC RATES OF MR ' 93. Based on Special Education enrollments and SSA for adults, MMWR in the 1-26-96 issue published the results that indicated West Virginia had the highest rate of MR followed by Kentucky, Alabama, Mississippi, Arkansas, and Louisiana. Alaska had the lowest rate. In all, except Minnesota, Colorado, Maine and Wisconsin, there were more children than adults with MR, but the rates were even in California and Rhode Island.

MENTAL RETARDATION. The February '96 issue contains another thought provoking one-page statistical article called "Trends and Milestones." It starts with President Nixon's '71 call to reduce by a third the number of retarded persons in institutions; since then there has been a two-thirds reduction. Now four states are down to zero, but four others (Arizona, Georgia, Mississippi, and Nevada) actually increased institutional population. Another article reported on a survey of schools preparing social workers, which indicated that their students are not being provided sufficient practical experience with persons who have developmental disabilities.

PACESETTER. This excellent free publication comes out three times a year (4826 Chicago Avenue S., Minneapolis, MN 55417-1098). The January '96 issue announces another free newsletter named FAST FORWARD from them. Another article on IDEA (based on PL 94-142 authorized by President Ford), compares the three versions of proposed reauthorizations. Public Broadcasting will air a special 20th anniversary of IDEA in April on "The Merrow Report."

RESPECT. Mantel Williams in the 3-12-96 FAMILY CIRCLE (1105th Avenue, New York, NY 10011) on page 170 says without respect, we're nowhere. Here in Aberdeen, SD a developmentally delayed older man was misused by "Gas & Go" employees and a 20 year old man actually squirted lighter fuel on his trousers and set him on fire. Disgusting, but disrespect has been obvious for centuries by otherwise compassionate humanistic people in regard to weaker people not able to retaliate.

HEALTH REPORT. This is a TIME regular. In the 2-19-96 issue under "The Bad News" section they say: "Another reason to get the lead out: in a four-year study, young boys found to have high levels of the heavy metal in their bones were more likely than kids with lower lead levels to engage in antisocial activities, among them: bullying, stealing and even setting fires."
     Under "The Good News" we find: "Always tired? Researchers suggest dimming the lights in the hours before bedtime. Exposure at night to normal indoor lighting prompts the body to stay awake past midnight and not want to fall asleep until around 5 a.m. That's just about when a lot of people wake up."

DISABLED/FEDERAL INCOME TAX. Generally IRS seems to be doing a commendable job by providing tax counseling for the elderly, providing large-print forms, Braille instructions, videotapes, and assistance for hearing impaired people with TDD equipment However, consideration of a disabled dependent living with one or both parents is still questionable, even though there are some guidelines.
     We will ask IRS for comments if, when we establish a discretionary trust fund for Robert, money/ property contributed for him can be considered support in the year it was provided rather than the year the trustee spends it on Robert's behalf. We will publish their response.

DISCRETIONARY FUNDS TRUST. We have a "draft" trust for Robert's incidental expenses not considered within the responsibilities of SSI, Medicare, Medicaid, or other Government operations. However, the various entities that we sent it to for comments either haven't responded or state they "don't give opinions on proposed trusts or in any way aid in the drafting of such." We have received assistance from a private attorney and another attorney, Bob Keen, who heads up SD Advocacy Services. In any case, we expect to make it a revocable trust and finalize it within a couple of months. We will be pleased to share the draft with subscribers with the hope that they will comment and we are eager to collaborate with anyone in fine-tuning the trust so that it will serve Robert for several years.

IMPEACHMENT, INITIATIVE, REFERENDUM & RECALL. This was inspired by the February '96 VFW magazine and is intended to remind readers that there are devices which can assist you in fighting elected officials and legislation that you dislike and in the case of the initiative introduce a proposed law directly to the voters (direct). A referendum is similar, but it can be compulsory, optional or by petition. Some states authorize all of these procedures. Some only one, and others combinations of the four. One worthwhile effort for you is promotion of authorization for any of the above procedures not now approved in your state so citizens have a more direct control of legislation and officials.

CENTER FOR SPECIAL ED. FINANCE. Put your wallet away! Although we all pay for at least some of its expenses through coop. agreement H159G20002, I (GJ) don't believe the Center is a Federal entity. I'm reviewing six of their recent publications and it seems that they provide policy makers with accurate U. S. Special Ed. information. If you write P. 0. Box 1113, Palo Alto, CA 94302, they might send you their Policy Paper #3 and other recent publications. We will publish any questions or comments that you have relating to Paper #3. One comment I have is that the most populous states spent the most for special education, and related services in FY 87-88. New York alone spent almost three and a half billion, but only 3.17% of that came from the Federal Government. Kentucky got 65-1/3% of the two-hundred-twenty-three and a half million they spent, from the Feds. I was pleased that the Dakotas provided most of their special education expenditures from within the states; in SD five times as much money comes from local funds than comes from the Federal Government and SD spends less than any other state for special education and related services (37 million).

SEPTEMBER '95 GOOD HOUSEKEEPING. On p. 95 and p. 96, Jane Rusoff writes about actress Julie Neumar's "Other Role" which is to mother her 14 year old son who has DS. John doesn't speak, but knows 100 "sign" words and he is learning to write his name. The article concludes with: "He knows much more than you or I think he does. He has a higher wisdom. The boy is so remarkable."

Supported Employment InfoLines. This newsletter published by TRN, P. 0. Box 439, St. Augustine, FL 32085-0439 has been superior in treating vocational issues. Their March '96 issue "lead" article is on reluctance to downsize sheltered workshops; it provided seven responses to arguments against rapid supported employment (SE) expansion. You can communicate with David Mank who wrote the article (1235 University of Oregon, Eugene, OR 97403-1235, E-mail: Robert and I (GJ) will! The seven responses relate to: SE safety and security, being an integral part of the community, choice by disabled people between SE and sheltered work, propriety of congregating disabled people in workshops, some people with disabilities like sheltered workshops because their friends are there, need for workshops as safety net if SE fails, and possible benefit for some from a workshop setting. Mank closes the final response identified above by stating: "Even in light of what is known about generalization and maintenance, the research shows that if we expect people with severe disabilities to be successful in community employment, training and support are best provided in the environments where employment is expected to occur." This is a big issue and deserves input from parents, sheltered workshop advocates, those who support greatly increased supported employment, and those who favor a concerted effort to provide full support to disabled people including as much supported employment as is practical and effective.
     We are satisfied with the collaboration of Vocational Rehabilitation and ATC officials in returning Robert to competitive employment and will provide them copies of this and Mank's article. Readers will be kept informed.

THE RURAL EXCHANGE. There was an excellent review article by Jack Mayhew titled "ACRES" in V9 #l in the RURAL EXCHANGE on an article in a recent publication (RESQ V14 #l, pp.20-23) on Supported Employment in Rural Areas. For a report of the article being reviewed contact Dr. Jack Cole the RSEQ Executive (3SPE New Mexico State University, Box 30001, Las Cruces NM 88003-0001).
     Write Robert if you want a copy of Mayhew's reviewer write directly to the Rural Exchange, 52 Corbin Hall, the University of Montana, Missoula, MT 59812 and ask to get on their free mailing list. V9 #l also reports that the National Institute on Disability and Rehabilitation wants comments on employment, medical and technological rehabilitation, and independent living in community settings, (Sheila Newman, Cornwall Incorporated, 6858 Old Dominion Drive, Suite 200, McLean, VA 22101).

EDUCATION FOR NON-VERBAL AND NOT FULLY LITERATE ADULTS. Aberdeen has had Adult Basic Education, tutoring, and other literacy enhancing programs for years, but we have reported mostly on Robert's experiences; if this subject interests you we will report on other programs and personalities. In the March '96 NEW DIRECTIONS, (Janet Fischer, 700 Rohl Drive, Sioux Falls, SD 57103) Janet on the first page discusses a similar program and she writes: "...It proves not only that adults with DS and other disabilities can learn to read, but also that people with disabilities can continue to learn through their lifetime."

BASELINE ALZHEIMER COGNITIVE FUNCTION TEST FOR 30 YEAR OLD PEOPLE WITH DS. The January '96 DS Association of LA Newsletter notes the above which seems to be credited to NDSS; In any case, we know it makes sense and Robert was tested at the ATC where he is a client. You could call NDSS, 800-221-4602, or if you have comments or questions write Robert, and I (GJ) will help him respond.

IDEA. The newsletter referenced above (8949 Reseda Blvd., Suite 109, Northridge, CA 91324-3943 contains an excellent review of IDEA and states: "We need also to commit ourselves to careful scrutiny of proposed changes which could strengthen them or weaken them." We concur, partially in recognition of Dr. Dick Koch former Dakotan and the key physician who agreed to chair the first parent-professional conference when I (GJ) asked him to a few months after Robert was born in 1972. Robert sent a membership check to this DSA a year or two ago and we enjoy and learn from their newsletter.

MAKING SOCIETY MORE AWARE OF DS AND OTHER DEVELOPMENTAL DISABILITIES. We hope you respond to the above banner by thinking "that's what I try to do," but too many who recognize the value never even try. Millions of people don't receive the care and understanding they deserve as a result, and ameliorative research that is possible isn't initiated. We published a poem very similar to the following a dozen years ago which was stimulating although not as polished as this one which Susan Ungaro, Editor of FAMILY CIRCLE, (110 Fifth Avenue, New York, NY 10011) in the 4-2-96 issue credits to Charles Osgood:


There was a most important job that needed to be done,
And no reason NOT to do it, there was absolutely none.
But in vital matters such as this, the thing you have to ask
Is WHO exactly will it be who'll carry OUT the task.
Anybody could have told you that Everybody knew
That this was something SOMEBODY would surely have to do.
Nobody was unwilling. Anybody had the ability.
But NOBODY believed that it was his responsibility.
It seemed to be a job that ANYBODY could have done,
If Anybody thought he was supposed to be the one.
But since Everybody recognized that Anybody could,
Everybody took for granted that SOMEBODY would.
But Nobody told Anybody that we are aware of,
That he would be in charge of seeing it was taken care of.
And Nobody took it on himself to follow through
And DO what Everybody thought that Somebody would do.
When what Everybody needed so did not get done at all,
Everybody was complaining that Somebody dropped the ball.
Anybody then could see it was an awful crying shame,
And Everybody looked around for SOMEBODY to blame.
Somebody should have done the job and Everybody would have,
But in the end Nobody did what Anybody could have.

Let us know if we can help you do it! Susan also endorses altruism and quotes Allan Luks' book THE HEALING POWER OF DOING GOOD, as saying selfless acts of helping others results in enhanced health.

Robert Johnson PICTURES & PERSONALITIES Send in clippings or whatever and we will return them immediately, but will include them in our next issue.
This picture was in the Fall '95 NEWS & VIEWS, published by the National Down Syndrome Society (666 Broadway, New York, NY, 10012-2317). Call 800-221-4602 to subscribe, obtain information on the magazine or on their June 27-29 conference in Phoenix. The conference will include a program for teens and young adults with Down syndrome.

MUMS NATIONAL PARENT-TO-PAKENT NETWORK. Julie Gordon is the MUMS president and editor (150 Custer Court, Green Bay, Wisconsin 54301-1243). MUMS is a national organization with the primary goal of matching people concerned with the same conditions. (They have a database of 6500 families covering over 1500 disorders. It contains 265 members who have children with DS including three who have twins with DS, two with Mosaic DS, two with DS and Hirschsprung's Disease, 26 with heart defects and DS, one with Arnold-Chiari and DS, and one with Trisomy 18/Trisomy 21, partial, unbalanced translocation).

DREAMMS FOR KIDS. I (GJ) have been aware of this organization for several years and believe I have sent them a couple of free copies of this publication. They state that it was founded by parents of a child with DS and the logo on its publication depicts a hand with the four finger crease (spoken of when Robert was born with the stigmatic label then used for DS as the adjective followed by the word crease). We shouldn't have to remind subscribers that it never was a conclusive indication of DS and that references to it now are few. Anyhow, they do not subscribe and in the most recent packet we received from them, DS is not mentioned except as noted above. However, we suspect that it is a legitimate non-profit organization with considerable value to people with a computer concerned with facilitating cognitive development of children (2763 Tasha Dr., Clearwater, FL 34521-1223). We will print a retort from the Hosmers (who appear to be the key people) similar in size to this article if they provide one, regardless of whether or not they give this publication visibility.

QMB/SLMB. These acronyms both relate to the national poverty level and Medicare. If your income isn't above the poverty level the QMB probably applies and much of the Medicare costs will be paid by your state. If income exceeds by less than 20% the poverty level, you still could get Medicare Part B premiums paid by your state. Call 800-772-1213 or to see if you qualify to file for Medicaid 800-638-6833. It is possible that a person receiving SSI or Medicaid may be on QMB and/or SLMB and not be aware of it.

DRUG NEGATIVES/CORRECTIVE ACTION. Sherry Rogers, M.D. has been cited as warning against intestinal hypermeability (leaky gut syndrome) caused by a widening between cells in the intestinal lining which allow toxins to pass into the blood stream. The body makes antibodies to them, but they have antigenic sites that are similar to those of many proteins. Food coming across the leaky gut finds similar looking antigenic sites such as on muscles and bones. They attach and start attacking those areas, causing inflammation with pain and aches. Also, the toxins that leak through reduce the liver's ability to prevent chemical sensitivities. The 11-9-95 WALL STREET JOURNAL includes a page B1 article on drug side effects which says most manmade compounds are really twins, composed of mirror-image molecules, or isomers, that are chemically identical but with different properties (sometimes adverse). More and more drugs are single-isomer compounds. Take a copy of this article to your pharmacist or the pharmacy department of a local hospital and ask for an opportunity to discuss the drugs your family ingests. Also point out that the Nutrition Clinic of the University of Texas will analyze for nutritional problems (free) the blood of people with DS around the country. (Nutrition Clinic, Biochemical Institute, University of Texas, Austin, TX 78712-1096).

SUBSCRIPTIONS. We need $5 or more to enter addresses on our mailing list and send four issues (one year) of this publication. Upon receipt of the money Robert sends his "thanks" along with a business card sized calculator or he will send a copy of NDSS NEWS & VIEWS (see picture, p. 14) as long as it is available. For larger amounts he sends both and extends the subscription one year for every $5 exceeding the basic $5 received. If we should cease publication we have $500 plus In a CD and we will refund any unfilled subscriptions since '92 based on $1 per issue.
     For several years we have received sympathy about our financial position but we want to emphasize that we are not unhappy with our financial position, but we need "support" which Includes renewals, visibility, a few new subscribers and Information we can pass on. For Instance, Emily Kingsley recently wrote: "Sorry about the low funds. If you need another subscription dues payment, let me know. I think you do valuable work and should be supported." Her letters provide more than the normal amount of support as you can see elsewhere in this issue. We have no doubt that she will send another check when the numbers on her mailing label indicates more funds are about due. The first digit is the last number in the year the last check was received and the second number reveals the month It was deposited; the last number or two indicates the cumulative amount received since '91 so with a $5 per year cost it should be fairly simple to figure. However, we don't send other reminders and no longer normally mall free copies.

DS, AAMR & IASSID CONFERENCES. They are fun and informative:
April 19 & 20 there will be a full DS Conference with workshops (some programs for people with DS) In French and English at the Queen Elizabeth Hotel. Montreal. Canada. Call (514) 845-6362.
May 28 - June 1 encompasses the AAMR Annual Meeting at San Antonio, TX (800-424-3688)
June 27 through June 29 at the Wigwam Resort In Phoenix, NDSS along with the DS Medical Interest Group will meet. People with DS (ages 12 and older) will have programs and baby sitting/day care will be available. Call 800-221-4602.
INTERNATIONAL ASSOCIATION FOR THE SCIENTIFIC STUDY OF INTELLECTUAL DISABILITY. Their 10th World Congress meets July 8-13 (IASSID), P. 0. Box 762 FIN 00101, Helsinki, Finland). Join AAMR on a Scandinavian tour before, or in Russia after. Call 800-424-3688.
July 26 - 28. Miami Beach - 24th NDSC Convention. Call 800-232-6372 for details.
August 27 - 30 WORLD DS CONGRESS. Call 800-221-4602 or write University Paris X: 200 Avenue de la Republique 92001 Nanterre, France.

  Non-Profit Organization  
U.S. Postage
Aberdeen, SD 57401
Permit No. 77
Northern State University
School of Education, Box 850
1200 S. Jay Street
Aberdeen, SD 57401

Subscribers/contributors - send correspondence to 1409 North 1st St., Aberdeen, SD 57401

  Revised: September 24, 1999.