People with Special Needs Down Syndrome Report


VOL. 17 #5SSN0731-566XAutumn 1997 

by the Roberts
Clayton and Johnson

The finger of Uncle Sam in I Want You recruitment posters will soon be pointing at persons with disabilities. General Colin Powell is currently mobilizing an all volunteer army to meet a major national emergency. There is no inductee in this army who will be classified as 4 F and exempted from serving. How many persons with disabilities and their advocates will hear the call and take up the challenge?
     One of the authors (Robert C) is an advocate. He and other advocates have not had a very good beginning in ensuring inclusion of persons with disabilities in the Presidents' Summit. They failed to communicate to the Summit planners, General Powell, and Uncle Sam an awareness of the special needs and talents of persons with disabilities. The ability to create a special forces unit build around self advocates like co-author Robert J. was not articulated.
     The result of this missed opportunity was an under representation of youth and adults with disabilities at the Summit in Philadelphia. The delegates from the 150 communities that attended left Pennsylvania without an understanding of the potential of including persons with disabilities into their action plans as an at risk population that could simultaneously serve and be served.
     Advocates must now partner with self advocates to get their message to as many of the 150 communities as possible as they develop their initial action plans. Self advocates with Down syndrome need to develop a national command center to coordinate efforts in this area.
     The first step is to become knowledgeable about the three year follow-up effort of the Presidents' Summit for Youth. The code name is America's Promise: The Alliance for Youth. The commander is General Colin Powell. General Powell has committed to initially raising an all volunteer army of 1 million. The ranks will grow to 2 million by the year 2000.
     The volunteer forces will focus on empowering the highest risk youth in America through the provision of five essential resources. The youth so empowered will seize the opportunity to be the very best that they can be.
     The five living Presidents identified the five essential resources in a joint declaration. All young Americans need:

  1. Caring adults in their lives, as parents, mentors, tutors, coaches.
  2. Safe places with structured activities in which to learn and grow.
  3. A healthy start and healthy future.
  4. An effective education that equips them with marketable skills.
  5. An opportunity to give back to their communities through their own service.
     General Powell's orders are that all volunteers must make specific commitments. These commitments must be linked to outcomes that can be measured by a specific number.

Robert Johnson commits to America's Promise: The Alliance for Youth to:

  1. Devote space in each issue of PWSN/DS REPORT for the next three years to reporting on the experiences of self advocates as members of the volunteer army's special forces.
  2. Function as an initial national command center for self advocates with Down syndrome beginning with the development of a national volunteer registry.
  3. Partnering in the development, field testing, and dissemination of a basic training manual for self advocates.
  4. Partnering in the development, field testing, and dissemination of guidelines for boot camp establishment for advocates and self advocates.
Robert Clayton commits to America's Promise: The Alliance for Youth to:
  1. Assist Robert Johnson accomplish his mission through provision of technical assistance.
  2. Assist Robert Johnson and his advocate support system to identify resources needed to fulfill his commitments.
     The outcome of the combined commitments will be that 100 of the charter 150 communities will have a component for persons with disabilities in their action plans.
Please forward your questions, suggestions, and commitments to the editor of this newsletter. This will enable you to join the chorus singing "You're in the Powell Army Now."

FEW THINGS IN LIFE ARE CERTAINTIES. Perhaps death and taxes qualify, but in the 6-23 U.S. NEWS AND WORLD REPORT on page 63 there is an article titled "Grandpa? He's on Ice" by Bob Garfield. He mentions a guy with a home cryonics lab, his mother and his grandfather. The three of them are somewhat removed cousins of George and Robert. The mother who was quoted as stating that if the town tore down the lab, it would kill her dad. By customary reasoning, most people would contend that he (Bredo Morstal) died a natural death in his old age in Norway, but perhaps his daughter is correct and frozen bodies are not dead as most people conceive of death. Also society may someday find "the fountain of youth" they have been seeking for centuries. Some people don't think "death" is a certainty!
     Taxes are much less permanent and authorities can simply change to a name involving less animosity anyway. Dr. Clayton properly takes a positive tone in announcing the attempt to enroll self advocates in the proposed army of volunteers. He was at the Philadelphia President's Summit For Youth and feels confident that retired General Powell will be able to muster an army of volunteers. Those of you who have read this paper for several years may recall the establishment of People With Down Syndrome by Robert. It didn't take off as we had hoped but is the holder of our checking account which pays the bills for this paper. He also established the NE Chapter of the State "Coalition of People with Disabilities" organization and the Exceptional Adults Fellowship Club (disbanded with endorsement of People First, which later was initiated by the State Arc). The response to those efforts weren't tremendous. It seems to me that inertia with a multitude of excuses holds power over most people, disabled or not. Anyhow, we are going to give it the "old country try." Dr. Clayton was the head of the Georgetown University Child Development Center when Robert was born and has continued to do humanistic work. You can write to him at the Birth Defects Center of the Santa Rosa Children's Hospital, 519 W. Houston St., San Antonio, TX 78207-3108. He is both a pediatrician and a clinical geneticist. He is on the Board of Directors of NDSC and is very knowledgeable about all human developmental disabilities. If you know of anyone that might register with the Alliance, ask them to write to us. Initially, we will establish two rosters of disabled volunteers 1) People with DS and 2) People with Disabilities. Some might want their names on both. There is no charge. A 20 cent postcard can take care of communication. There is no age requirement and there is no need to identify the extent or nature of disability unless the person would prefer to be affiliated with others with the same problem, if enough interest develops to set up a separate category as was done for people with DS.
     Please give us an address and phone number so you can receive future issues of this publication and other materials. Robert is a "People First" member and he has asked the local Chapter if they would also be willing to register volunteer applicants. See our JOIN TOGETHER article.

DNA UPDATE. The Spring '97 issue of the publication advises caution on various Alzheimer's disease indicators and drugs. It also reprints a letter from the Texas Governor's wife applauding those who exert effort to find the facts relating to AD and otherwise assist. It includes articles on Parkinson's and ALS from which the following information is extracted:

     ALS SYMPTOMS, EFFECTS, NEW RESEARCH DESCRIBED. Amyotrophic lateral sclerosis is a progressive degeneration of neurons in the brain and spinal cord. These motor neurons control voluntary muscles. The disease is also called Lou Gehrig's disease after the baseball player who died of it in 1939. Symptoms are a slow loss of strength and coordination in one limb, muscle twitches or cramps, gait that becomes steadily more stiff and clumsy, and difficulty in swallowing, speaking, or breathing. The onset of symptoms is gradual. As the disease progresses, other muscle areas become affected; complete paralysis may result. One in five patients may live longer than five years with ALS. Nearly 5,000 Americans or one in 10,000 are affected with ALS.
     Some five to ten percent of patients with ALS have a family history of the disease. A mutation in a gene on chromosome 21 was found in 1993. The gene involved was called Cu, Zn superoxide dismutase (SOD1). Some 20 percent of patients with a family history have mutations in this gene. Over 50 mutations have been identified in this gene thus far in different families. Different mutations do not appear to have an effect on the age of onset of symptoms, but may have an effect on the progression of the disease. Some mutations significantly shorten the life of the patient while other mutations are less damaging and allow the patient to live from 18 to 20 years with the disease.
     The gene's normal function is to produce an enzyme that breaks down proteins which damage tissue. But mutations in this gene SOD1 cause what is called a gain of function. That is, the SOD1 protein becomes more active, produces toxic substances, and injures normal parts of motor neurons causing them to die. The next question is how to prevent the motor neurons with the mutant SOD1 from dying. There is some suggestion that Vitamin E may delay the onset of symptoms. Whether mutations in SOD1 affect patients without a history of the disease is also under study. One mutation has been reported in several patients apparently without a family history. However, after careful review of the family history and analysis of family DNA, the results indicate that the mutation may have been inherited. Other modifying factors, such as other genes or environmental influences may also contribute to the disease.
     My sister died of ALS, but that is our only family connection. Kay almost made the five year maximum remaining life predicted for her.

PARKINSON'S. First described in 1917, Parkinson's disease is second only to Alzheimer's disease as the most common neurodegenerative disorder. More than one-million Americans have Parkinson's disease, which may begin in the 50's or 60's. It develops very slowly, but is progressive.
     Patients can present with a variety of symptoms which include a tremor (shaking) while at rest, slowness of movements, shuffling gait. stiffness of limbs, difficulty in maintaining balance, or stooped posture. Other symptoms are masking (reduction) of facial expression and difficulties with speech, swallowing, or chewing. The onset of symptoms is not sudden. Early signs may be a mild tremor in the fingers of one hand, a slight stiffness of one limb, or a slight dragging of one foot while walking. The diagnosis is made if a patient has three of the following symptoms: resting tremor, muscle rigidity, bradykinesia (slowness in initiation of movement), or postural instability (difficulty in maintaining balance). At times in the later stages, patients may develop a dementia.
     What causes this disease? We know that initially neurons in one part of the brain (the substantia nigra) die. These are neurons that make dopamine which is important in motor function (walking, moving limbs). The standard treatment is replacement of dopamine by giving the precursor L DOPA in the form of levodopa or Sinemet.
     Finding the actual gene is similar to finding the street address of a person who lives in the U.S. We know the state in which the person lives (chromosome 4) and now we must find the city and then the street and then the house (which will be the gene). How long will this take to identify the gene? Hopefully only a couple of years.
     Then what? Then researchers will study the protein of this gene to understand how a mutation in this protein causes neurons to die. Will all Parkinson's patients have mutations in this gene? At this point in time, that is not known. Most cases of Parkinson's disease do not have a family history of the disease. There may also be environmental factors at play here. However, finding the gene involved with the disease gives Texas Tech DNA Bank and other researchers new avenues to investigate to try to prevent this crippling disease.

The DNA UPDATE is published by Dr. Shirley Poduslo and her Texas Tech DNA Bank (3601 4th Street, Lubbock, TX 79430). Robert and I, at the urging of my brother, have contributed our blood sample and relevant facts to the Bank with no cost to us.

AAMR MEDICINE DIVISION. Robert is a member. Over the years, he has been a member of other divisions (one comes free with his basic membership), and, even though he is credited as the co-author of this issue's "lead" article, he isn't a college graduate and certainly not a physician. Leslie Rubin, MD is the President of the Medicine Division and we believe he has and will continue to do an outstanding job: he also is the Medical Director of the Marcus Center at Emory University (1605 Chantilly Drive, #150, Atlanta, GA 30324-3268). One of the many reasons I asked Dick Koch, M.D. to direct our first DS Parent/Professional meeting was that he had done an excellent job as President of AAMR and Dr. Rubin will do so too if he should decide to later compete for that post. The mission of the division is to strive to enhance the capacity of the AAMR to meet the needs of people who have Mental Retardation and Related Developmental Disabilities and their families, and in assisting them to achieve their personal goals by providing the responsible elements relating to maintaining physical, emotional, and social, health and well being.
     Two of the goals of the Division follow: 1) Determine and define health care needs of individuals with Mental Retardation and related Developmental Disabilities (MR/DD) and how best these can be provided, and 2) Examine and influence policies related to Health Care Reform and Health Care Financing that affect individuals with MR/DD.
     The process of development and implementation of the Medicine Division Strategic Plan holds that Individuals with MR/DD are entitled to appropriate Health Care in order that they might live their lives to the fullest.

BREATHING DISORDERS DURING SLEEP. Ask your Congressperson for help in obtaining NIH Pub. #94-2966; it reviews some of the more than 70 sleep-related disorders. Also, the March PLASTIC AND RECONSTRUCTIVE SURGERY contains an article by J. F. LeFaivre on DS and sleep apnea which we will review in our Fall issue. See the May CHEST for new methods of shrinking excess upper airway tissue that might alleviate some problems.

OLEIC ACID/SPHINGOLIPIDS. More than a year ago, the University of Texas Nutrition Clinic (College of Natural Science, Biochemical Institute, Department of Chemistry and Biochemistry, Austin, TX 78712-1096) informed Robert and me that analysis of our white blood cells indicated we have a need for oleic acid (a lipid) and they gave us a couple of paragraphs about the substance. They say it is an essential component of cell membranes and is also essential in the transport of lipid-like materials enclosed in the membranes. Sources are unhydrogenated olive oil, corn oil, and safflower oil. They recommended a tablespoon of olive oil daily and that we replace margarine, butter, shortening and salad dressing, etc. with polyunsatured fats. However, if there is a history of gall bladder problems they want to be called (512-471-3662).
     The 5-31-97 SCIENCE NEWS indicates that sphingolids appear essential and that perhaps by enriching bodily concentrations of them through diet, physicians may help prevent or treat a host of diseases, including cancer; one of them, sphingosine, inhibits protein kinose c (PKC) which is involved in cell growth, blood clotting, hormone action, and even learning. Dr. Shayman of the University of Michigan is exploring whether limiting the availability of a sphingoloid can curb the kidney damage frequently associated with diabetes.
     We have sent a copy of this article to the University of Texas Nutrition Clinic and if they comment before this issue goes to press, it will follow.

DS CLINIC AT BIRMINGHAM. Ditza Zochor, M. D. has an article in the May DS NEWS. She says it is the only clinic in Alabama solely dedicated to children with DS; it serves the southeast U.S. Services include genetic services, ophthomology, gastroenterology, orthopedics, otolaryngology, dental, neurology, social services and psychiatry. It is especially known for its cardiology and cardiac surgery program. Contact Dr. Zochor (Clinical Medical Director, 331 C Sparks Building, 1720 7th Avenue S., Birmingham, AL 35294-0017 or 205-934-1055, 800-822-2472. For appointments call 205-939-9141).

CALORIE REQUIREMENTS FOR DS. You should write Dr. Cecilia Rokusek of the Center for the Developmentally Disabled at the School of Medicine, University of SD at Vermillion, SD with specific questions. She is credited as one of the authors of a chart divided by gender and with two columns of four age divisions (from one through 14) with two categories differing in weight, height and calories per day (also ranges of calories and calories per degree of weight measurement). Girls in the 11 - 14 age range at the highest weight range (about 100 pounds) are in the 1500 - 3000 calorie range, whereas boys in that range are in the 2000 - 3700 calorie range. Calories per day recommended for that category are 2200 for girls (500 less than comparable boys).

FREE CHILDREN'S ORTHOPEDIC SCREENING. Robert received one several years ago. Shriner's Hospitals provide high quality medical care for children under age 18 at no cost with orthopedic disabilities such as cerebral palsy, scoliosis, club feet, hip deformities, missing limbs, juvenile arthritis, spina bifida, rickets and limb length discrepancies.

ADULTS WHO CAN'T LEARN. Iva Singer in the June BUSINESS AND HEALTH identifies Tom Cruise, Magic Johnson, Joan Rivers and Charles Schwab as among the 15% of working Americans with learning disabilities. He says an estimated ten million adults may have some degree of ADD. People with ADA considered disabled under ADA are entitled to equal opportunity, freedom from discrimination and reasonable accommodation by their employees, such as: 1) help with organizing tasks, 2) extra clerical support and 3) reduced distractions and 4) explicit instructions.

A GOOD INVESTMENT. The 6-23 NEWSWEEK on page 21 contains an article by a 42 year old disabled gunshot victim who works for the NYC Center where he got rehabilitation help. He says that there are more than 49 million Americans with disabilities and that they are the largest minority and one that doesn't discriminate. He says 70% of the disabled are unemployed. We thank him for the message and NEWSWEEK for giving it visibility.

ANN LANDERS. Over the years she has frequently mentioned disabled people in a positive manner. What follows was extracted from a recent GRAND FORKS HERALD: Dear Ann Landers: My son, Jimmy, has Down's syndrome and will be 24 soon. He is nonverbal and functions on a 4- to 5-year-old level. I have been a single parent for 23 years and have done the absolute best I could. Jimmy is well-behaved at home and in public and is one of the nicest people anywhere. I'm so grateful to have him. He is presently on a long waiting list for a day program, and until an opening becomes available, he will continue to stay home all day."
     "The problem is my family's attitude toward Jimmy. They want me to put him in a home so I can have my own life. I tell them that I DO and that Jimmy is part of it. Don't misunderstand me--my family always treats my son cordially when we visit, but it would be really nice if one of them would offer to watch him for a few hours and give me a little break."
     "By the way, please ask people not to come up to us and shout, 'Does your son have Down's syndrome?' or 'How retarded is he?' My son can hear perfectly well and is bright enough to know when he's being talked about, not to.--Brandon, FL."
     Ann's reply: "Dear Brandon: I am appalled by your family's lack of sensitivity, not to mention common sense. I am printing your letter in the hope that my readers with friend or family members who are tied down caring for someone with a disability will offer some relief."
EPILEPSY. Some extracts from the DIETITIAN'S PATIENT EDUCATION MANUAL: " Epilepsy is a brain disorder characterized by recurrent involuntary motor activity or changes in consciousness or behavior. The incidence is almost 4 cases per 1,000. Epilepsy occurs in 33% of children with cerebral palsy and in 15% of those with spina bifida."
"The status of each child with epilepsy should be reviewed periodically, to be sure that he or she:

CALIFORNIA VERBAL LEARNING TEST - CHILDREN (CVLT-C). This test tells how various groups such as those with DS, Williams and ADAD perform in specific areas such as rate of learning and overall level of recall. Your school "testing" person may allow you to look it over.

EATING DISORDERS. This article was gleaned from the June ARCHIVES OF GENERAL PSYCHIATRY. A Commentary by K.S. Halmi, M.D. says: "Bulimia Nervosa is a disorder identified by specific symptom constellations that most likely emerge from a complex integration of physiological, psychological, and environmental influences. In the search for risk factors from these influences for Bulimia Nervosa, the authors of the three articles about Bulimia Nervosa published in this issue have implicitly conceptualized a model of the development of Bulimia Nervosa...which proposes that Bulimia Nervosa develops after the stress of dieting. This dieting experience is influenced b y antecedent conditions that include genetic and physiological vulnerability, psychological predispositions that are often affected by the family, and societal influences."

CAN OLDER PEOPLE WITH DS HELP THOSE YOUNGER? Bob Clayton, M.D. worked closely with Kathy Haggerty, who had DS and was an aide at St. Coletta's School in Northern Virginia, 25 years ago while he was the Georgetown University Child Development Center. We discussed the question with Georgia Ramos, Aberdeen Special Education Director and she agreed and hopes efforts to solicit volunteers, who have DS, will be successful.

HETTINGERS HONORED. At the SD Arc & People First Conference, Duane and Jane Hettinger were recognized for years of work for the DD cause. Their son, Art, is one of Robert's friends. Jane was the assistant to the teacher responsible for the Junior High Special Education program that Robert participated in. Jane is again the President of the local Arc.

G. TIMOTHY JOHNSON, M.D. He is the Founding Editor of the HARVARD HEALTH LETTER. No relative, but I did encourage him over the phone to start the letter many years ago. My strongest compliment is that he has maintained his easy disposition over the years and doesn't appear awed by his TV and other successes. This monthly "class" newsletter costs $32 per year (164 Longwood Avenue, Boston, MA 02115).

MARGIE AND CLIFF BREKKEN. Margie is Robert's oldest sister and Cliff is like a brother. They had their first new home built a few years ago on the shore of Devils Lake, but now the lake is up to the basement (though it has leveled off). They had to leave quickly and were fortunate to be able to move into the farmstead where Cliff grew up. Margie is now back at UND opting for the Special Education Administrative Program, instead of a doctorate. She was on the School Board and believes she could be effective in a supervisory position but may continue as the elementary school counselor in DL. Their children, Ted and Mattie, are both at the University of Minnesota. Ted is studying engineering, but Mattie hasn't chosen a field as she is on the first Golden Gopher Women's hockey team and has just matriculated. She went to Lake Placid, NY again at the end of July for the Women's Jr. National Camp. Robert sent them each $50 to help with University expenses.

PETER JOHNSON. All four of Robert's sibs wrote a brief message about Robert and DS shortly after he was born for the mimeographed paper about DS I started in 1972. They have all continued to help him and have taken jobs that enable them to also help many others. Peter is the brother closest in age to Robert. Peter and his family (3 children and wife) were here over Father's Day and we enjoyed their company. Pete sturdied the basketball backboard and otherwise helped.
     Peter is President of the LISTEN CENTER in Grand Forks, which is in a building dedicated to the purpose of catering to the social and recreational needs of people with developmental disabilities. He earns his living as Assistant Director and Media Relations Coordinator for the UND Office of University Relations, but he also is Communications Chair for the ND March of Dimes, Director of the Northern Interscholastic Press Association, and a Board member of the ND Professional Communicators. Grand Forks had the largest flood in U.S. history this spring by per capita damage and relocation of people; the UND provided substantial support for the city and populace. Peter and family hope to be able to move back into their home before the end of June -- then the real "work" begins!

FLUORIDATION. In the June issue, the article with this caption indicated I would send the article to Sig Pueschel, M.D., who did research on DS and fluoridation a couple of decades ago (probably after his son, Chris, was born 31 years ago). Dr. Pueschel called and explained he knew of no influence of fluoridation on DS incidence or any adverse influence of it on people with DS.

CARED ABOUT, IF NOT FOR. In our summer issue we had our original article with this caption. In the interval between delivery of that issue and now, I had a conversation with a trusted friend of 25 years who, although his wife is dead, lives with his 31 year old son who has DS. The size and age of his family is similar to ours, too. He is also very happy to have his son share the home. We will continue to print reactions of readers to the question of domiciles for disabled people. There probably are no "best" or "worst" arrangements as long as the disabled person and the most significant family members and care givers are satisfied.

PERSONAL PROFILE OF ROBERT. If you send a SASE we will be pleased to send you a copy of the one sent Dr. Abeson of the Arc of the US (he continues to seek them from disabled people).

AARP/NRTA. They publish MODERN MATURITY bimonthly for which $2.40 is taken from annual dues (if you aren't 50 and they allow you to subscribe, you won't be sorry, 601 E St. N.W., Washington, DC 20049). The current issue says the President accepted his lifetime membership with gracious good humor. It was a typical 90 page issue with lots of good material including articles on cutting dental bills and long-term care insurance. Since some of the premiums for LTC insurance is now deductible as a medical expense, you will want to review page 74 to see if you should consider buying such insurance. Some of the dental tips follow: skip annual full mouth dental x-rays unless necessary, consider having sealants applied to the chewing surfaces of molars, and don't buy expensive electric or ultrasonic toothbrushes. See page 82 of the May-June issue about caring for the up to one-half million older Americans with MR.

KIVE DAHLBERG. His mother, Gayle, suggests that since crutches/wheelchairs are recognized as beneficial aids for some people, verbal guidance for people who are DD should be allowed by caregivers without suggesting they are an infringement on the "rights" frequently distributed. She recognizes that such properly presented mental crutches do not limit the rights but helps the DD person to be more socially accepted. Kive keeps slim (down from 145 to 115 pounds). The Seaside SIGNAL carried a picture of Kive carrying a torch for Special Olympics.
     Kive is on a waiting list for a religion supported home or apartment further inland. You can write Kive or his parents at Elsie Route Box 670, Seaside, OR 97138-9510.

THYROID, DIABETES/PREVENTIVE MEDICINE. All of the frequent problems of disabled people that can be identified by preventive medicine are the real subject. The two listed are among those problems we in this household monitored with preventive medicine techniques. We have frequently described the free nutritional evaluation program of the University of Texas Nutrition Clinic, which we continue to recommend to disabled people, particularly those with DS. There might be some expenses relating to the drawing of the blood and its speedy transport to the clinic. Perhaps Medicare or private insurance (in our case GEHA did so) will pay part of the cost.
     We will be pleased to print any plans or tactics that might result in approved preventive medicine (PM), payment or rebates even if it is restricted to say $100 annually per person. However, we strongly recommend that you reduce your views on preventive medicine to writing and send them to your U.S. Senators with copies to one or both Senate Leaders. It may take years, but there is a lot of truth in saying, "Begun is half done!"
     One of the best indicators of thyroid disease is the TSH which refers to Thyroid Stimulating Hormone which comes from the pituitary gland and can be eva luated from a blood specimen.
     To promote the early detection of adult-onset diabetes (type 2) it was recommended at mid-year that everyone 45 or older get a blood sugar test once every three years, and people with risk factors do so more frequently. The free Nutrition Clinic (identified above) informed me several years ago that my blood sugar was high. Now, anyone with 126 miligrams of glucose per decileter of blood is considered diabetic. I also have blood drawn and examined at the annual Red Cross Health Fair (the $20 fee is refunded by GEHA) and their guidlines consider high anything over 110. They say blood sugar will be high if I have eaten anything or had anything to drink except water shortly before the blood is drawn. Exercise and a healthful diet help prevent Type 2 Diabetes from which about 15 million Americans suffer. You can easily measure your blood glucose levels at home; some insurance companies cover the monitors. For information on a disease prevention program from PCS a subsidiary of Eli Lilly, call 800-223-7745.

IDEA. The following has been extracted from Edition 16 of CHILDREN'S MENTAL HEALTH UPDATE (4826 Chicago Avenue S., Minneapolis, MN 55417-1098). If you are a Minnesota resident and have a disabled child they will send free a Guidebook and a Guide to ED Planning for children with emotional or behavioral disorders; if not, the Guidebook is $12.78 (tax and shipping included). The Guide is $16.02. Most of the changes to IDEA takes effect October 1.
     Schools can suspend a child for up to 10 school days or provide an interim alternative educational setting if they use the same discipline for non-disaled students. If a preponderance of evidence has proven that injury is substantially likely to the child or others, the school can ask a due process hearing officer to approve an interim alternate educational setting for up to 45 days.
     "Dangerous Weapons, Drugs, Controlled Substances. If a student with a disability brings a gun or dangerous weapon onto school property, possesses or uses illegal drugs, or sells or solicits the sale of drugs or any controlled substance on school property or at a school function, school officials have the authority to place the student into an IAES for the same amount of time that a child without a disability would be disciplined, but not to exceed 45 days. The particular IAES would be determined by the student's IEP team. This is the only place in the law where the placement could be made over parental objection. Under previous law, the U.S. Gun-Free Schools Act had restricted such placements to guns only."
     "Manifestation Determination. If a change in placement to an IAES is being considered because a student 1) carries a weapon to school or a school function; 2) possesses or used illegal drugs or sells or solicits the sale of a controlled substance, or 3) engages in other behaviors that are a violation of school board rules or codes of conduct, parents must be notified about the proposed disciplinary action and all procedural safeguards no later than the day when the school makes the decision. Also, as soon as possible (but no later than 10 days after that date), a determination must be made by the IEP team or other qualified person as to whether the behavior is a manifestation of the child's disability. If the behavior is found not to be related to the disability, the school may use the regular school discipline procedures used with all children."
     "However, the child must continue to receive special education and related services during any time of extended removal from school. If parents disagree with the manifestation determination they have the right to an "expedited hearing," with a due process hearing officer. During the time of the appeal, the child would remain in the IAES until a decision was rendered or until the time limit of the IAES placement expired."
     "Transfer of disciplinary records. States can enact laws to require school districts to include in the records of a child with a disability a statement of any current or previous disciplinary action that has been taken against the child. The record can be transmitted to the same extent that the information is included in and transmitted with the records of students without disabilities."

     Identifying the person/organization deserving credit for the new IDEA law led us to conclude that the U.S. political system again deserves the award with secondary recognition deserved by many individuals/organizations that studied the issue and took a stand on various provisions. It makes the future look bright!

JOIN TOGETHER. Send a postcard to them at 441 Stuart St., 7 #F, Boston, MA 02116 and ask for their Monthly Action Kit on the President's Summit. You might also want to ask for the one on Youth Sports. Their basic target is substance abuse. Cigarettes are still an increasing problem with nearly a half of the students in grades 9 - 12 smoking last year. In a study of 6th through 12th grades more than one-fourth admitted drinking alcohol weekly and marjuana use has risen by half in another study.
     They provided information on Girl Power which encourages them to be more active (800-544-7467) and PLAY (800 929-PLAY). Their "Sports" monthly action kit devotes full pages to soccer, urban areas, what coaches can do, teachers, parents, resources and general sports information.
     This is a tough world. We hope you tell Join Together to consider you on their team even if you don't send money and may not be active!

FREE CATALOGS. Call 800-292-3366, Ext. 287 for CHILDBIRTH GRAPHICS or 800-850-8602 for ABILITATIONS.

THE MUMS MATCHMAKER. Each issue is like a transcript of comments that would be made at a world gathering of mothers with disabled children. Probably all disorders are discussed at one time or another, but certainly any can be. Some 1700 have been and they can be matched. Annual subscription cost is only $10 (Julie Gordon, 150 Custer Court, Green Bay, WI 54301-1243).

SUPPORTED EMPLOYMENT INFOLINES. There are 10 issues per year for $99; it is the best in its class (P. O. Box 439, St. Augustine, FL 32085-0439).
MINIMUM WAGES. Many states have laws on this that vary from the Federal requirement and in some situations food stamps can count toward minimum wage requirements. Currently, welfare and workfare recipients must be paid the minimum, although legislation is being considered to exempt them.

HALLELUJAH! That's how Robert reacted when he examined a packet from Mariea Best, President of the International Down Syndrome Foundation. There has been a need for such an organization since before he was born! There had been DS International, but it was never formally established or promoted. Mariea wants to facilitate fund raising by making available the '98 Down Right Beautiful Calendar at roughly one-third of the $15 selling price. The '97 calendar contains beautiful pictures of people with DS of both genders and varied racial backgrounds; a spiral divider separates the picture from the calendar (both 10-½" x 12"). It is a great PR piece and would bring groups easy funds with amounts depending on their efforts. In any case it would be a worthwhile service project.
INEXPENSIVE FOLDER FOR INFORMATION ON DS. NADS will send you this beautiful heavy duty folder with the pictures of 14 young children with DS on the cover (which is titled "Special Deliveries") for $1 plus shipping. We got good material from NADS when Robert was born 25 years ago, but it would have been even better if it had this inviting, optimistic appearing cover. They are almost 10" x 12" and could hold up to l/2" of letters and pamphlets, (NADS, P.O. Box 4542, Oak Brook, IL 60522).

THYROID/MIND-BODY/AARP. I have supported AARP since before the National Teachers Association merged with it decades ago to publish MODERN MATURITY and THE BULLETIN. To get on their mailing list, send $8 to 601 E Street NW, Washington, DC 20049. The thyroid and mind-body overview are in V.38 #7 of the BULLETIN. Your library probably has these periodicals, but subscribers who want to know most of what is essential about the two captioned subjects can send in a SASE for copies.

MAJOR PROGRESS IN DS RESEARCH. NICHD & NDSS have entered into a $3-million research partnership that will result in major findings relating to Down Syndrome. NDSS will add $600,000 to an anticipated $2.4 million from NICHD to provide grants to individuals and organizations for DS specific cognition, behavior and related therapies. NICHD exerts to publish its solicitation for grant applications within a year and with late 1998 as the target for the first grant award.
     Felix de la Cruz, M.D., M.P.H., Chief of the Mental Retardation and Developmental Disabilities Branch of the NICHD says: "Down syndrome has always been an area of high priority for the NICHD because it is the most common source of mental retardation and because it involves every system of the body. If we can understand the causes and effects of Down syndrome, we can also gain a better understanding of cardiovascular conditions, Alzheimer's disease, childhood leukemia, and more." Felix and the late Ted Tjossem (who then headed that Branch) met with Dick Koch and myself in '73 for a planning session for the first DS parent/professional conference. Their assistance permitted Dr. Koch to attract some of the most significant researchers as presenters.
     Dr. de la Cruz and I were Dr. Koch's co-chairmen. I talked to Felix over the years following the conference and he always seemed to seek DS researchers who needed support. There weren't many others than Ted. Felix had administrative support in that Branch at that time, but it always seemed to me to be the most efficient Branch in the entire Federal system. Special thanks and credit is due to Thoms F. Robards who chaired the NDSS Threshold Campaign, which brought in 4.2 million in gifts and pledges. Of course, Betsy Goodwin, President and Co-founder of NDSS has deserved (and received) credit from the start. Myra Madrick is "Executive Officer" and does much of the traveling for NDSS (she will be at the Madrid World DS Congress this fall).

Everybody's DS dream won't come true before or at this international gathering this Fall with participants from eighty or more countries. Presentations will deal with advances in the four years since the lst World Congress was held. Professor Juan Perera is President of the Congress which will be held in Madrid. The Vice President is Professor Jean Rondal from Belgium. Several illustrious experts on DS from the U.S. will be there. Due to differences in programs, transportation and lodging, we can't list costs, but payment can be made by check, bank transfer, and credit card. If you might attend provide as much detail as you can to Viajes Iberia Congreso, San Bernardo 20 - 28015 Madrid, Spain, Telephone 34(9)1-532-8137, Fax 34(9) 1-522 3418, E-mail Questions relating to science should go to Dr. Perera, Cala Blanca 2 0 7009 Palma de Mallorca, Spain, Telephone 34(9) 71-604 914, Fax 34(9) 71-604 998, E-mail:

6TH ANNUAL DD RESEARCH AND APPLICATIONS CONFERENCE. It will be in Winnipeg October 9 and 10, 1997. Registration costs vary from $50 for a student, self advocate or family member to $95 with lunches included. For a schedule or information contact the St. Amont Centre, 440 River Road, Winnipeg, Manitoba, Canada R2M329 or call Jo at 204-256-4301 X234. People concerned with challenging behavior likely will find many answers at this conference.

THANKS TO WILLIAM BRONSTON, M.D. AND SANDRA JENSEN. His article about Sandra Jensen in the DS NEWS (my first DS publication), seemed forlorn. Sandra had heart and lung transplants last year largely due to his advocacy. He concludes his article with the statement: "Without the resolve and commitment of thousands of us taking action in unison, we can chalk up an uncounted number of unnecessary deaths and the continuation of unconscious concessions to second class citizenship that rely upon our inaction to continue unabated."

The February GOOD HOUSEKEEPING contains an excellent story about Sandra Jensen by Celeste Freman. I suppose for parents who have a child with DS it would be considered a tear jerker. Everyone of her quotes ring true to me but "People treat you like you're a thing, not a person...that's what I've been fighting against since the day I was born" perhaps has the greatest support from disabled people. Sandra wrote a letter to Robin Williams (who had portrayed a boy destined to die young because of premature aging) and she concluded: "because instead of being locked away for what I can't do, I am famous and respected for what I have done." We ask that you send GOOD HOUSEKEEPING a card with thanks for printing the story (959 8th Avenue, New York, NY 10019). Sandra died not from the heart-lung transplant, but from a neurosurgical procedure. She got an extra year and a half of life due primarily to Dr. Bronston's advocacy.

NDSC AUGUST 8-10 SILVER CONVENTION. It will be in Phoenix. Better call 800-232-NDSC and tell them you are coming; on-site registration is possible but chancy; call 800-875-9685 for the NDSC travel agency. The convention will be at the Pointe Hilton 800-876-4683. Separate conferences will also occur for people with DS and another for siblings of people with DS. Drs. Sig Pueschel, Allen Crocker, and Bill Bronston will present. On Sunday the final program is "Speaker Questions and Answers Panels." I believe all three physicians named above were at our first Parent-Professional DS Conference; I remember well my time with Sig and Bill. This is a once in a lifetime opportunity to catch up on what has happened this past quarter of a century in regard to DS and if the planners achieve their goal, you will see a vision of what is in store for the next 25 years.

DS SUPPORT GROUPS - FREE SUBSCRIPTIONS. For a relatively short period we will add any DS Support Group address to our mailing list free. There are no qualifications except the name and address of someone willing to accept a copy. We will not provide the addresses to anyone else and we are happy to include only a single person as long as that person is willing to be recognized as a DS Support Group Communicator. However, this offer applied to only one address per commuting area. Send us a card quickly.

OUR THANKS. Over the entire 25 years we have put out publications similar to this, the people that have written about their thoughts, experiences, and feelings have been most rewarding. For the past 15 or so years Northern State University Professor Emeritus Lois Sollie has provided encouragement, comments, and proofing; Peggy Mueller has done much the same. Donna Steckler at Zion Lutheran Church has expeditiously and effectively made copies for us since Robert became involved a couple of years ago. Jim Rappe, manager of the NSU printing facility has consistently told us how to prepare the mailings repeating facts as necessary without complaint. Mavis Hoffman gathers and holds material that comes to us at NSU. Of course, the postal clerks and delivery people do outstanding work. I feel somewhat diminished when I conclude by mentioning that some readers send money, but we wouldn't continue if they didn't. If you have found value in an article or two and send $5 or more you will be helping others get the information in this periodical. We believe we can put out six instead of four issues for $5, but we will need payments from everybody. This issue, now, is due to a newsy note with $30 and another great note with a check for $25 from the Executive of the oldest DS National Organization in the U.S. We aren't suggesting you send so much, but perhaps you can spare a few dollars and a few minutes soon.

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

  Revised: June 14, 1998.