People with Special Needs Down Syndrome Report


VOL. 17 #2SSN0731-566XApril 1997 

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

PUT PEOPLE FIRST. That was the admonition of H. B. Deets, Executive Director of the National Retired Teachers Association, (Division of AARP) in their January house organ. The fundamental goal of our publication is to educate, motivate and elucidate and as many readers realize, we highlight special efforts from time to time such as the strengthening and modernizing of the IDEA and that is why this issue hits that subject so hard and with your support our country will do it. Quoting Deets: "It's time to govern. That means putting aside partisan political interests and putting the interests of the American people first. Following the election--in which less than half of those eligible voted--both parties talked of bipartisanship and cooperation. We hope this talk of bipartisan cooperation will result in bipartisan solutions." We will be pleased to send his entire column to all who send a SASE.

IDEA. If Senator Daschle's status report and prognosis doesn't follow, it will be in our next issue. Perhaps the most current statement I have seen was in the Winter "Mobile Association for Down Syndrome Citizens, Inc." NEWS. The main thrust was to get readers to inform legislators that changes that threaten vital civil and educational rights are unacceptable (which the editor, Paul Connolly apparently feels are sought under the banner of safe schools and stay put placement). He says House Bill 5 is essentially the same as was adopted last year and is still unacceptable. He does list the following strong recommendations for Congress: 1) Don't change Part-B of the Individuals with Disabilities Education Act (IDEA). 2) Permanently authorize Part H (Early childhood education for children from birth through age 3). 3) Reauthorize the discretionary programs: They were intended to make Part B effective. 4) Help IDEA meet the promise with increased appropriations. Much of the above was taken from the December DOWN SYNDROME NEWS.
We tend to feel that special educators can suggest language that will pacify those advocates who contend IDEA shouldn't be changed one iota and the bogey men will get the children if it is. Many, if not most, are satisfied with the law as it is and how it has been improved these past 24 years. We think now is the time to make it whole and fully acceptable both to educators and support groups and we believe Senators Lott and Daschle (along with their compatriots) will insist that this be done. The "iron is hot," let the 105th Congress strike now!

SENATE DEMOCRATIC LEADER & SSA ON SOCIAL SECURITY. Senator Daschle in a recent letter says:
"Thank you for your thoughtful letter expressing your views on Social Security. I appreciate having the benefit of your thoughts on this important issue."
"We also agree on the need to protect the vision of Franklin D. Roosevelt for Social Security. It must be protected to provide a basis for all Americans to retire with dignity and with the basic support needed to maintain their quality of life. No program has ever done more to prevent and alleviate poverty in America. Social Security has been uniquely successful by any measure. For more than half a century, it has served as America's family protection plan, providing millions of elderly and disabled citizens with secure incomes, and relieving their children and grandchildren of what could otherwise be the unmanageable burden of supporting them throughout their old age."
"Many have spoken about the long-term challenges facing Social Security. Indeed, as the so-called "baby boom" generation retires, the finances of the system will be strained to keep up with their retirement needs. At the same time, I believe Social Security will continue to succeed with relatively minor modifications to provide a sound basis for the retirement of future generations."
"Social Security will not need a radical overhaul, as some have suggested, to meet these future challenges. I am not in favor of privatizing the Social Security system. Such proposal would undermine the fundamental integrity of the Social Security."
"As you mentioned, I have proposed a modest experiment to see if the system can be made even more secure by diversifying the portfolio and investing a limited amount of funds in non-governmental stocks and bonds. That would allow Social Security a greater return on investment. Such an approach has the advantage of leaving the essential principles of the system undisturbed while helping restore long-term balance to the system's finances. Robert Ball, one of the fathers of Social Security, shares this point of view."

SSA TALKS DOLLARS AND BENEFITS: "SSA administers several trust funds involving billions of dollars drawing interest. About 69% of SS income goes into a fund for retirees and their survivors; another 19% goes to the Medicare beneficiaries and the remaining 12% goes to people with disabilities and their families. Future changes may raise retirement ages, reduce benefits, increase payroll taxes or increase the benefits subject to taxes."

MADSC NEWS. To exchange publications or get a sample copy, write to 3408 Wellborne Dr. E., Mobile, AL 36695. Len Leshin, M.D. writes detailed comments for them on selected journal articles relating to DS and not restricted to medical items only. It is published by the Mobile Easter Seals Society; thanks to them, Paul Connolly and Dr. Leshin.

ORIGIN AND EARLY YEARS OF THE DS CONGRESS. I was there and have the original documents to prove this is how it was founded and how it fared during the first year. To my knowledge, I was the only one who thought it could and should be founded in 1972. Anyhow, I started publishing shortly after Robert was born and sized up the prospects of an international DS clearinghouse. Both groups from Mexico visited our home in Friendly, MD along with several people from various places in the U.S. and Canada who liked our paper. There were two "National" groups in Chicago and several others elsewhere in the U.S., but few collaborative efforts. I erroneously thought the Mexican groups would collaborate with each other as would the Chicago groups, but that didn't happen. The last item in Vol 72-5 of my first mimeographed paper endorsed MOTHER TO MOTHER published by NADS and announced the offer we had from Oberlin College of only $9.50 per day for room and 3 meals over the Fourth of July weekend in 1973. A letter I signed 6 November 1972 provided more details and revealed that our former DSA was now a Chapter of NADS and on the back we reproduced a flyer from the Mothers of Young Mongoloids (of which Marj and I were members) promoting the film WILD CHILD to be followed by a presentation by Dr. Mary Coleman. There was a form which formed part of that flyer to be returned to Celia Wyman. In our next issue (Volume 1973-1) the lead article was on the conference and I reported I had talked to both Dr. Richard Koch and his wife and that he had been asked to be the Program Chairman. (continued in next issue). NDSC celebrates its Silver Anniversary August 8-10 in Phoenix.

WORLD CONGRESS ON DS. One of our subscribers, Professor Dr. J. Perera is the President of the forthcoming 6TH WORLD CONGRESS ON DOWN'S SYNDROME (Cala Blanca, 2, 07009 Palma de Mallorca, Spain). It will be held October 23-26 in Madrid. It replaces the Congress scheduled last year at Paris, which had to be canceled. More than 1000 pre-registrations have been received from 38 countries. Simultaneous translation into English will be done. Write or Email: Please pass the word as the DS movement will be accelerated if this Congress is well attended. Subscribers, who send a SASE, can get a flyer on it from us.

SEIZURES. Robert has had no further symptoms.

SYLVIA GARCIA ESCAMILLA. She was one of the key organizers of NDSC even though she is a Mexican citizen and the Executive Director of the Association Mexicana de Sindrome de Down, A.C. (Selva No. 4, Insurgentes Cuicuilco, Mexico 04530 D.F.). If you can read Spanish, send her $25 to subscribe to EN CONTACTO (its a glossy magazine devoted to DS).

MAN WITH DS DRIVES, AND HAD HOUSE BUILT. Subscribers, who send a SASE will receive a copy of the 3-7-97 AP article about this 27 year old Miller, South Dakota man. His parents give much credit to the Huron Adjustment Training Center which has provided Corey Blachford assistance since 1992 when they established a satellite program. It serves a dozen people in Miller (half are employed). Corey gets only minimal assistance, but he has a case worker and a residential living instructor. The article includes a picture of Corey and his Dad in the new house.

DS SYMPOSIUM. We not only will attend, but are prepared to present if an opportunity occurs. Since it is labeled "Caring for Down Right Beautiful People" I'm anxious to see how Robert reacts when I report his recent behavior at the '97 SD Special Olympic Basketball Tournament. He may be willing to share his recollections/feelings with you: "I was ready to shoot three pointers and had to stay in the game." The coach was attempting to make player changes and wanted to take Robert out, but Robert wouldn't go.
The DS Symposium will be April 25 - 26 at the Grand Forks, North Dakota Holiday Inn. Key speakers will be Drs. Allan Crocker and Robert Venniga. Individual fees are $20 or $25 per family. It intends to provide some answers to how to handle the unique changes, challenges and choices facing a family that has a member who has DS. Sue Swenson, who served as a policy analyst for the staff of the Disability Subcommittee of the U.S. Senate will start the meeting and that afternoon Dr. Veninga will tell how to manage stress and how to build hope even in difficult times. On Saturday Dr. Crocker will tell how people with DS should stay healthy (he was a national DS expert when Robert was born and still is with the Harvard Medical School and Children's Hospital in Boston). I have heard Dr. Crocker several times and want readers to note that he will provide as good an answer to any question on DS as perhaps anyone in the world could provide. He co-chairs the Professional Advisory Committee for NDSC and like me, is a former NDSC board member. To register, send either $20 or $25 to the Arc, Upper Valley, 2500 DeMers Ave., Grand Forks, ND 58201 or call 701-772-6192.

OVERVIEW OF DS DEVELOPMENTAL PSYCHIATRIC AND MANAGEMENT ISSUES. That is the title of one of the Chapters of the October '96 issue CHILD AND ADOLESCENT PSYCHIATRIC CLINICS, which issue targets MR. It is very good and copies can be made at a moderate cost 20 cents per page (pp 881-894) to be paid to CCC, 222 Rosewood Dr., Damvers, MA 01923. I will send a copy to subscribers who agree to comply with the preceding copyright arrangement. If you obtain the article by ILL, identify Robert Hodapp, Ph.D. from UCLA as the author. Dr. Hodapp acknowledges that there is much research done on DS and both NDSC and NDSS are very active. As a result, he says DS is the ideal control and contract group for many types of behavioral research. He says his review is restricted to: 1) strengths and weaknesses; 2) trajectory, 3) regression and 4) mother-child interactions and family work. However, he also has sections on Psychopathology, Alzheimer's Disease, medical issues, schooling and work. It closes with a couple of paragraphs on therapy. In his last few sentences, he recognizes that people with DS differ in several important respects from others and that it is becoming increasingly important to consider them as prone to a variety of developmental, medical and psychiatric concerns. How different from an article I wrote about in my 2-9-73 mimeographed paper called DS CONFERENCE NEWS. It was about an EDUCATION AND TRAINING OF THE MENTALLY RETARDED (DEC '71) article using as a hypothetical disability what I thought was clearly DS and contending that concentration on individual development needs and not specific categories of disabilities was the only way to go. I wrote then: "It seems obvious to me that to eliminate or minimize a problem, it must first be positively identified. Could any harm come from a parent - professional group with a primary interest in Down's Syndrome?" WHITE, SINGLE AND UNDER 21. That describes most near mothers who have abortions. That hasn't changed, but the abortion rate has dropped to the lowest level in nearly two decades. In 1976 less than a million abortions were performed. They peaked in 1990 at 1.4 million - all the preceding has CDC as the source.

TRAVEL FOR DISABLED PEOPLE. Under certain circumstances, the personal assistant of someone with a disability may be able to travel free on Greyhound Lines, Inc. However, Greyhound reserves the right to determine if the complementary ticket is necessary and if the person can safely travel alone. Children 12 years old and under who have a disability must be accompanied by an adult. This information and more is available in Greyhound Travel Policies, a pamphlet that the bus line has prepared to assist passengers with special needs.
Other assistive devices, including wheelchairs, that do not fit safely in the passenger compartment also can be stowed in the luggage compartment. If you have any special needs, you must contact Greyhound at least 48 hours prior to your scheduled departure, provide them with your travel itinerary and details about any special assistance you require. To arrange for special needs, travelers without an assistant can call Greyhound at (800) 752-4841. Those traveling with an assistant should call (800)231-222 (voice). The number for TTY users is (800) 345-3109. The pamphlet is available by calling customer assistance at (800) 822-2662 (voice) .
People whose disabilities are not visually identifiable (such as hearing impairments, cognitive disabilities, back injuries, etc.) are frequently not recognized as having a disability and hence, not accommodated appropriately. Airline personnel still lack proper training in many areas such as training in proper transfer procedures and sensitivity training.

GAO REPORT ON FEDERAL PROGRAMS THAT PROMOTE EMPLOYMENT OF PEOPLE WITH DISABILITIES. Last September, the report was made to the Subcommittee on Employer-Employee Relations of the House Committee on Economic and Educational Opportunities entitled, "People with Disabilities: Federal Programs Could Work together More Efficiently to Promote Employment." The report focuses on federal programs that target people with disabilities, and how many of these programs provide employment-related services, the extent to which information, eligibility, and services are coordinated under these programs, and the effectiveness of federal programs in promoting employment among people with disabilities. The federal government funds 130 programs in 19 federal agencies to assist millions of people with disabilities. Frequently, services are provided by numerous public and private agencies at the state and local level.
The report finds that little evidence exists for evaluating the effectiveness of these programs, individually or collectively. Despite the size of the federal commitment, few programs are required to gather the outcome data necessary for reliable program evaluation. For example, 26 of the 130 programs provided direct employment services such as skills training and job search assistance. Yet, many of the 26 programs have had little or no formal evaluation in recent years. In many instances service providers track different consumer information, use different eligibility criteria and have different rules of confidentiality.
Overall, the report suggests that these programs do not work together as efficiently as they could. The chief obstacles to better coordination are differing eligibility requirements and numerous service providers for one person. The lack of coordination between programs creates the possibility that people with disabilities are receiving duplicate services or experiencing gaps in service. Better coordination is crucial to enhance the efficiency of programs administered by public agencies at all levels of government.
To obtain a copy of this report, write to U.S. General Accounting Office, Post Office Box 6015, Gaithersburg, Maryland 20884-6015, or call 202-512-6000. You may access GAO reports on the Internet by sending an e-mail to: or visit GAO's home page at: The first copy of each report is free; additional copies are $2 each.
(Taken from the January 1997, PRAIRIE WHEELER).
SIX STAGES OF DS. The fifth such conference will be held at the Los Angeles Airport Marriott, May 10, 1997; probably upwards of 500 will attend (Write DSALA, 8949 Reseda Blvd #109, Northridge, CA 91324-3943; to get 9 issues of their newsletter annually, enclose $15).

SE INFO LINES. It reports on the new Work Opportunity Tax Credit (WOTC), which replaces the Targeted Jobs Tax Credit. It provides up to 35% tax credit for the first $6,000 of wages during the first year of a qualified new hire (write P. O. Box 439, St. Augustine, FL 32085-0439 for subscription information).

EMPLOYMENT AND RETURN TO WORK CONFERENCE FOR PEOPLE WITH DISABILITIES. It was held over Halloween in Washington, DC. Proposed laws were discussed and it was announced that both the Bunning Bill in the House and the Jeffords Bill in the Senate would be reintroduced in this Congress.

PEARL (BUCK) LOSSING. Her daughter, Carol, was developmentally disabled, but there was no known chromosomal analysis to indicate she did, or did not, have Down's syndrome. Pearl was not only a great writer (Nobel Price in '38), but a great human.

CRIME PREVENTION TIPS FOR PEOPLE WITH DISABILITIES. Individuals with disabilities, as well as able-bodied, can take responsibility for protecting themselves and their communities against crime. Unfortunately, criminals often prey on persons with disabilities, assuming they cannot readily protect themselves. And persons with disabilities may develop predictable patterns of activities that make them vulnerable to victimization.
Like all persons young and old, the disabled should be alert to their surroundings and take common-sense precautions inside and outside their homes with regard to locks on doors and windows, answering the phone and door, driving and traveling on public transportation. If you have a physical or sensory impairment, however, it's particularly important to:
Vary your activities, routes, and time of departure.
Let family or friends now where you are going and what time you expect to return home.
Travel with someone you know whenever possible.
Carry enough money for telephone and emergency use, but never carry or display large
amounts of cash.
Take into account your limitations and decide what you are prepared to do if confronted by an assailant.
Know your neighbors and decide which ones you could rely on in an emergency.
Never let strange phone callers know you are alone or have a disability.
Use Direct Deposit for government payments to you.
Keep your money, keys and credit cards in an inside pocket or hidden on your person.
When using public transportation, ride as near to the operator as possible.
Be aware of your body language. Transmit confidence and certainty.
Be involved: Help your Neighborhood Watch with newsletters and telephone calls. Join a Window Watch to keep an eye out for unusual activity in your neighborhood. Help out a neighbor who's been a recent victim of crime. The more active you are, the safer you'll be--and the safer your neighborhood will be. Taken from the January 1997 PRAIRIE WHEELER. FREE TRIAL PUBLICATIONS RELATING TO DS. The following will send one copy of their publication as a sample. If no E-mail address is provided, you will have to send a postcard or letter. If you send a personal message construct it with the thought that the publisher may reprint it (your consent to do so is assumed); your approval will be solicited if significant changes are deemed appropriate. The publications marked with an asterisk solicit and welcome clippings or other material relating to DS that they can reprint.

YATED. Their Chairwoman recently noted they had read our last issue and that the current address is: Derech Beit Lechem 81, Jerusalem, Israel 93624. If you can read Hebrew, I will send you their flyer . I no longer communicate regularly with others concerned with DS outside the US, but it seems as if international DS efforts have been improving and the internet should help those efforts.

GLADYS AND ERNEST HETRICK. They have seen our DS publications since a mutual friend Paul Kerchendorfer, helped us mimeograph our papers the first few years. Since my wife and I both worked for the Naval Research Laboratory, the Hetricks cared for Robert while we lived in Friendly, MD. Gladys recently sent us the poem "WORLD'S MEANEST MOTHER?" which portrayed her mothering traits as well as those of her mother. Space precludes inclusion of the entire poem here but we will send it to those who send us a SASE. Some extracts are:
"I had the meanest mother in the world," this anonymous person wrote. "While other kids ate candy for breakfast, I had to have cereal, eggs and toast. When others had Coke and candy for lunch, I had to eat a sandwich."
"I am ashamed to admit it, but she actually had the nerve to break the child labor law. She made us work! We had to wash all the dishes, make beds, learn to cook, and all sorts of cruel things."
"She always insisted on us telling the truth, the whole truth and nothing but the truth. By the time we were teenagers she was much wiser, and our life became even more unbearable."
"My mother was a complete failure as a mother. None of us has ever been arrested, or beaten by a mate. Each of my brothers served his time in the service of his country. And who do we have to blame for the terrible way we turned out? You're right, our mean mother."
Look at all the things we missed. We never got to take part in a riot, burn draft cards and a million and one things that our friends did. She made us grow up into God-fearing, educated, honest adults."

LAYNE/SHAUNA JOHNSON AND PARENTS. They were presenters at a session of the UDSF Annual Youth & Adult DS Conference. You may recall the wedding pictures of Layne and Shauna we printed a couple of years ago. We suspect their marriage pros and cons were well discussed and we thank all of them for sharing their "love story." There is a married local couple who came here some years ago, from the South Dakota State Institution for the Developmentally Disabled and they are doing great!

UDSF/DSAW. These are two of the strongest "state" DS groups and perhaps the only ones. NADS is the oldest active DS group in the US, but basically Chicago is the main thrust of their efforts, although all they have to do is substitute an "I" in their name for the "N" and they could represent International or the Illinois DS effort (as they see fit) since for years they have served all three constituencies. Please let us know of other "state" groups and details on their publications if they have any. The Utah Down Syndrome Foundation publishes the ADVOCATE (161 Center St., Clearfield, UT 84015), which we commend as a model for any DS group. We don't understand the relationship to the International Down Syndrome Foundation, but in their current issue they did identify the "Down Right Beautiful" 1997 calendar that the IDSF sells for $15 (470 E 1750 N, North Ogden, UT 84414). Joan Meeks has paid for a subscription to this newsletter for UDSF so we will be happy to also send a copy to any other state DS group whose address we receive. SOUTH DAKOTA SPECIAL EDUCATION FUNDING. As we noted in our Thanksgiving issue, the new funding formula gives school districts a fixed dollar amount. This system supersedes the allowable costs for reimbursement previously authorized and should make it easier for all parties to stay within their budgets. SPECIAL OLYMPICS. People with DS at the ATC (which Robert attends) have to sign a Special Olympics release acknowledging that they can't participate in SO activities that results in hyperextension radical flexion or direct pressure on their neck or upper spine unless they have had a full radiological examination which establishes the absence of atlanto-axial instability.

OCTOBER '96 - RUNNER'S WORLD. On Page 18 one of the editors provides a picture of his 14-year old daughter, who has DS, and describes her 50 meter Special Olympics run. Like so many others, she got a late start but she came in second. She didn't gain fast enough after birth either and nearly died during heart surgery. She is deaf and will never talk, but I bet she will get lots of Special Olympic running medals.

INCLUDE US! Lou Shaw and Christy Johnson produced this exciting 33 minute children's video dealing with togetherness and inclusion; many in the cast have disabilities. It can be obtained from most Blockbuster video stores, THE EXCEPTIONAL PARENT , or from TiffHill Productions (first name of their daughters, who have DS) at P. O. Box 1138, Sioux City, IO 51102. There is also an Educator's Guide which also costs $17.95 and an audio which is only $8.95. You can get more information by calling 1-888-INCLUDE

DARLENE VORHIES. We repeat her phone (515-472-4449) and address (306 W. Harrison, Fairfield IA 52556) because she has been active with the Arc and similar organizations for more than a quarter of a Century and you might want to obtain some of her knowledge and opinions. She currently is involved with the Arc All-Nite Skateathon and a Country Music Show (April 20).

MEDICAL CARE FOR DISABLED CLIENTS BY MAJOR CARE PROVIDERS. All disabled people deserve and need considerable medical attention of they are to develop to their full potentials. At the ATC where Robert works, they have a Registered Nurse and a CNA so they administer shots and monitor private medical care by the primary physician and specialists concerned with dental, eye, ear, skin, and other cares. They sent a two page Nutritional Screening report home with Robert which was very helpful to us and will be provided his physician for reference.
ELECTRIC TOOTHBRUSHES. Robert bought a Sonicare for $100 which he seems to tolerate. It runs automatically for two minutes which is claimed to be adequate since it produces 31,000 brush sweeps per minute. It can be turned off any time with a button. It claims to reverse gingivitis. They will refund the cost if he doesn't get a better dental checkup next month. In any case every disabled person should have a dentist and do what is necessary to keep the teeth clean and disease free. Any good (they all aren't) toothbrush will do what needs getting done if used at least two minutes in the morning and in the evening.

BELL'S PALSY. I now have this problem and understand it is quite common and has been recognized for more than 50 years. Some clients at sheltered workshops have had this problem. It is most common between 30 and 60 years of age. It results from damage to the facial nerve which runs beneath the ear to all muscles of the face on the same side. In 80% of the cases recovery begins in a couple of weeks and is completed within a few months. Physicians frequently give a corticosteroid such as prednisone, which I took. I have suffered for more than a month and expect to continue to improve gradually for another couple of months, at least.

CHILD SUPPORT/NEW JOBS COULD REDUCE WELFARE COSTS. Associated Press recently sent an article from St. Paul on the State Congressional hearings on this subject. It was said that families are much less likely to need welfare if support payments are made. Although Minnesota collected twice as much as it did five years ago, $650 million are still owed. The article also said about 50,000 new jobs are expected each month which will help state welfare recipients seeking work.

PROSPECTIVE STUDY OF THE PREVALENCE OF ALZHEIMER-TYPE DEMENTIA IN INSTITUTIONALIZED INDIVIDUALS WITH DOWN SYNDROME. This article is in the January AJMR. It's from the Netherlands and based on several years of study. All subjects had at least ten early signs of dementia on the checklist used (this may be the instrument we reproduced in a related article several years ago). The checklist they used has 27 symptoms and since it is an appendix we will send a copy to all who provide a SASE. Robert, his mother and I discussed the 37 symptoms and agreed that none fit Robert at this time.
Prevalence of dementia increases from 11% between ages 40 and 49 to 77% between 60 and 69 years of age. All 70 or over had dementia. Their results can't be directly extrapolated to non-institutionalized patients with DS, but their methods may be appropriate to monitor people with DS for the development of dementia. Call 800-424-3688 for information on joining AAMR and getting their outstanding publications, plus more. Rhonda Young, who directs the education program at the sheltered workshop Robert works at also had this Journal. She has been establishing a base line on any indication of the onset of Alzheimer's for Robert, which could be very valuable over the years.

WASH YOUR HANDS!!! Handwashing has been determined to be the single most effective way to prevent disease. However, studies have shown that people do not wash their hands as often as they report.
An observational study conducted by the American Society of Microbiology (ASM) indicated that almost one-third of the people studied did not wash their hands after using the bathroom. This is in contrast to a follow-up telephone survey in which 94% said they washed their hands after using the restroom.
Another study conducted by Compliance Control, Inc., of Forestville, M.D. indicated that employees of restaurants, grocery stores, hotels and healthcare facilities also have relatively low rates of handwashing. The results indicated that baseline handwashing performance was less than two washes per day. Extracted from the ND Epidemiology Report Oct - Dec 1996. Regular handwashing prevents disease! To get on the free mailing list for CLEANLINESS FACTS , send your name and address to 475 Park Avenue S., New York, NY 10016.

DEMISE OF THE "R" WORD. Many people have found the word completely negative and valueless. It includes conditions according to the situation that prevailed at the beginning of the Century and which led to extermination and mistreatment of many. But ease of use and inertia allowed those who couldn't or wouldn't seek treatments to continue its use. One such group which seems generally on our side is the National Institute for People with Disabilities which scheduled its 18th International Conference on MR/DD from March 17-21. In their excellent announcement, few references were found relating to MR even though it involved hundreds of thousands of words in the 20 big pages. I will send this to their CEO Dr. Joel Levy, seeking reactions and even if they don't agree that "enough is enough" we will reprint it. Developmental Disabilities is a broad encompassing term, but if lesser problems are to be included, the word "delayed" or perhaps "problems" could follow the phrase "developmentally disabled."

ROBERT'S MEDICATIONS AND SUPPLEMENTS. The only medication he takes relates to what his dermatologist probably still calls folliculitus. He has been treating Robert for about 15 years and since the skin problem hasn't ever been cured we have had Robert's pediatrician, general practitioner and other physicians look at it. The best long-term control so far seems to be sulfameth + TMP, 800 mg tabs 3/3 of which two a day keeps it under control whereas with less there are frequent boil spill out problems and ugly sores appear. Generally his skin condition, I think, is quite common with DS. We will be pleased to act as intermediary to anyone interested in communicating on the subject with Warren Redmond, M.D., our local dermatologist. We will do the same for John Adams, M.D., our family physician. For about a year, Robert has taken 25 mg of vitamin B2 twice a day, ½ tablet of a super B vitamin pill twice a day, 420 mg of choline daily, and also 400 mg. folic acid daily, along with 1500 mg. calcium, and 750 mg. magnesium daily. The UT Nutrition Clinic says the tests indicate a need for oleic acid but we haven't complied well with recommendations to replace margarine salad dressing, etc., with unhydrogenated olive oil (1 tablespoon daily). The clinic welcomes "subjects" with DS; anyone can apply and will get a proper timely response from Elaine H. (Nutrition Clinic, Biochemical Institute, Department of Chemistry and Biochemistry, University of Texas, Austin, TX 78712-1090). We have endorsed this program for years, and expect to submit new blood samples soon and receive new recommendations when the lymphocytes have been grown and their reaction to various nutrients analyzed.

ABUSE OF DISABLED ADULTS. "No person may take advantage of adults who are disabled by placing such persons in fear of physical harm or taking or exercising control over the property of such persons with the intent to defraud such person. To do so is a crime punishable under the law." From the excellent free CONSUMER'S GUIDE TO SOUTH DAKOTA LAW from the State Bar of South Dakota, 222 East Capitol, Pierre, SD 57501.

REACTIONS TO SPECIAL EDUCATION COSTS. As we have noted in these past few issues, several states, including SD, are limiting their share by terminating the former reimbursement procedure which perhaps led school districts to identify the maximum number of students needing special education. A recent Phi Delta Kappa poll found only 5% of respondents believe too much was spent on special education whereas 47% said too little is spent and another 47% said the amount is about right. Perhaps 10% of an average district's students are receiving special education. When this Congress reauthorizes IDEA, there perhaps will be some fine honing on special education. funds. Express your views to your U. S. Congressional Delegation.
UTAH PALS PERFORM. The STANDARD EXAMINER gave one and a half pages to this story about the Ben Lammond High School group from Ogden and their director Mark Shipley. All nine of the PALS (performing Artists Lengthening Strides) have DS. They performed for an hour in Provo. A high school girl with DS, along with six other disabled students danced "Making Room for Every Flower" at Timpview High School. For more information on PALS, write Mark Shipley at 1002 S. Main, Springville, UT 84663 (clippings sent by Joan Meeks).

HEARTSPRING. "Hello. My name is Ann Buckendahl and I work at Heartspring in Wichita, Kansas. A colleague passed on your newsletter on to our Admissions area and pointed out that paragraph on our Summer Intensive Behavior Program (SIBP). I just wanted to thank you for including it in your newsletter. We appreciate it."
"We have offered the Summer Intensive Behavior Program for three years now and it has been very well received by parents. We have been able to show measurable results in the seven week program for children with very challenging behaviors."
"This is also an exciting time at Heartspring because we are wrapping up a capital campaign to relocate our campus to an entirely new site on 37 acres here in Wichita. The new facilities are designed to the specific needs of the children we serve. The construction of the new campus is underway and we hope to move in January 1998."
"If you would like to know more about Heartspring you can visit our WEB site at:" Sincerely, Ann

DHEA. We had already taken DHEA off Robert's nutrients, but we see now in the March MAYO CLINIC HEALTH LETTER, that Mayo physicians advise against taking DHEA at this time.

RESPECT AND PROTECT. It's a theme of the Devils Lake, ND School District with a goal of preventing violence and harassment. Robert's eldest brother, Sam, is the Facilitator (his wife, Mary is one of the special education administrators). We think Superintendent Bommersbach is backing a program that should be implemented widely around the nation. Prevention is much more effective than correction. If you have suggestions/comments send them to us and we will forward them to Devils Lake. Robert's eldest sister, Margie Brekken, is the Counselor for the Devils Lake Elementary Schools. She organized a panel on "Friendship" and the video of the presentation was shown on the local access channel.We will forward all letters to Sam and Margie.

MONTHLY DS CLINIC. Pediatrician George Durham and Peggy Dodds are in charge and also available are Athleen Godfrey and Laura Gaynak. For information on the clinics of other Utah DS activity, write UDSF, 161 Center Street, Clearfield, UT 84015.

STATE INSTITUTIONS. Since 1960 more than a third of state institutions designed for 16 or more people with MR/DD have been closed. This was stated in the February MENTAL RETARDATION with the Institute of Community Integration at the University of MN as the source. Twenty-five more are scheduled to close by the year 2000.

BREAKING NEW GROUND. This is for rural people making a living from the land, but with disabilities and is free from Purdue University (1146 Agricultural & Biological Engineering Building, West Lafayette, IN 47907-1146). It is about the same size as our paper but with twice as many pages with a multitude of pictures. For $5 they will send BRIDGING HORIZONS, which relates to FFA members with disabilities.

THE RURAL EXCHANGE. The University of Montana through the affiliated Rural Institute on Disabilities (52 Corbin Hall, Missoula, MT 59812) publishes this free publication consisting of 30 pages the same size we produce. Their last issue of '96 featured self-advocacy and independent living. It contains a history of the self-advocacy movement (People First held their first conference a year after we had our first DS parent-professional conference). One of the authors, Bonnie Shoultz can be reached at 800-894-0826 and will refer nearby self-advocacy organizers to you.
THERAPEUTIC MASSAGE FOR INFANTS AND YOUNG CHILDREN. We frequently endorse PARENT NEWS from Utah State University. If you are interested in the captioned subject or certainly infant stimulation, ask Marlene Deer, The Editor, if she will put you on their free mailing list, but to specifically send you V20 #2 which is devoted to this subject.
TONY APPEARS TO HAVE DS. A third of a page in the February 10th MEDICAL ECONOMICS appears to be a promotion piece for someone at 481A Edward Ross Drive, Elmwood Park, NJ 07407. Tony's picture is featured below the caption "Build a Better Life." Below his picture the ad reads: "Tony is one of the more than 6 million Americans with mental retardation, he wants the same things you do...a happy, productive make prove himself. Every day, people like Tony take part in programs and job training, neighborhood living and self-development, proving that persons with mental retardation can contribute to our communities. That's why the Association for Retarded Citizens asks for your support. Help build better lives. " Great guy and great message except I believe NARC disestablished the name provided (which I fought nationally for in 1973 at the ARC Convention when the "C" stood for children who represented only a portion of the Arc effort). I will send a copy of this to the journal, the Arc headquarters, and the address in the ad-seeking explanations. Tony doesn't look like he needs help, but he gets it anyhow from the arc and several DS specialized organizations. Thanks to MEDICAL ECONOMICS for running the ad and their regular advertisers who pay the bills.
WOODBINE HOUSE. Ask for their spring special-needs catalog (800-843-7323, 6510 Bells Mill Road, Bethesda, MD 20817). They have several publications that likely will interest you and some are worth their weight in dollar bills. GROSS MOTOR SKILLS IN CHILDREN WITH DS costs only $14.95; it is written by a physical therapist with 16 years experience working with children with DS. It should be worth many times that to all who buy it, but they will refund the price for books returned in saleable condition. For the same price you can get the Internal DS Foundation "DOWN RIGHT BEAUTIFUL '97 CALENDAR." The publisher, Irv Shapell, has a child with DS (Jake); I've met Irv a couple of times at conferences and since we gave away their "Babies with DS" book for several years with extended subscriptions, I had dealings with them and they were all great. Be sure and read his letter on pages 10 and 11.

DOWN RIGHT BEAUTIFUL. The BALTIMORE SUN carried this story about Lily Woodward and the calendar featuring a dozen other children. The International DS foundation printed 17,000 calendars and will use the proceeds to produce a documentary on DS for parents of newborns. The article says life expectancy has risen to 55 years for people with DS.

BROOKES PUBLISHING. This is one of our favorites. Call 800-638-3775 and ask for their current catalog. One book we highly recommend is ADOLESCENTS WITH DS, which was rewritten after 10 years; they will sent it with a 30 day money back guarantee ($35.95). The authors are great. There is a forward by Eunice Shriverand the introduction is by Emily and Charles Kingsley. It is divided into: Health and Physical Development; Behavioral, Psychological, and Psychiatric Issues; Education; Life in the Workplace, and Life in the Community. It is indexed with a resource list.

NDSS. They are half way to their $3.5 million goal. Write them at 666 Broadway, New York, NY 10012-2317. Call 800-221-4602, or contact them electronically at to communicate about DS or find out how you can help them. They are establishing an affiliate board which will further broaden their decision making base.
Their recent UPDATE item included a picture of Dr. Michael Bérubé with details from an interview with him plus information on his new Pantheon book (a portion of the proceeds goes to NDSS). They wrote Congressman Riggs as House hearings on IDEA will relate to discipline, disruption and cessation of service. It also recognizes the dearth of post-secondary educational opportunities for high school graduates and an entire page is devoted to extracurricular inclusion.

FRIENDS AND RELATIVES. This paper has been supported largely by Robert's friends and relatives. Almost all subscribers become instant friends, but the base of financial support has always come from friends' and relatives' donations recognizing that we need encouragement and help. Robert has been collating and helping with production for more than a decade and seems to like being manager and isn't terribly offended about the different "issues" we discuss in putting together every issue. Although we appreciate all those well wishers on the sidelines, a few dollars every year or two will ensure our continuance of effort.

OVERSEAS MAILINGS. Since my oldest brother died, I have been paying the costs for these advocates and clinics for the disabled (primarily concerned with DS), but as I get older I keep trimming the lists so if anyone wants us to continue or expand this endeavor, it costs about 75 cents total for each issue we mail. Of course, we will include any addresses you send inside the U.S. regardless of number, plus as many outside the U.S. as your funds will cover. $20 an issue would pay the costs to mail to all DS clinics and organizations in some place other than the U.S. If you want to clearly improve world collaboration relating to DS, send $20 or more.

COMPLIMENTS. We don't get much mail and most is from individuals asking for free copies but we did get complimentary letters recently from PROUD, MDSA, and other organizations which we appreciate. We haven't received any letters of criticism or expressing dissatisfaction.

SHARING GLOBAL PERSPECTIVES ON DISABILITY. This conference will be held near the United Nations Headquarters May 27-31 at the New York Hilton & Towers Hotel. You can get information or a preliminary program by contacting, or AAMR, 444 N. Capitol Street, NW, Suite 846, Washington, DC 20001-1512 or call 800-424-3688. Scholarships are available for self-advocates and family members. One of our past "original authors" Robert Schalock is the program chairperson and also President-elect of AAMR. At least two NDSC representatives (Frank Murphy, Executive of NDSC and Chairperson of the AAMR DS Special Interest Group, plus Bob Clayton, M.D. (one of Robert Johnson's key infant development specialists 24 years ago). NDSS is located in New York so if concerned about Down Syndrome call 800-221-4602 to see if they know of anything happening there with possible interest for you.

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

Send a contribution now to get the June issue unless you have contributed since 1995. Robert likes mail - send him some now!

  Revised: December 27, 1998.