July 2000 Issue

Our meetings are held on the first Friday of each month at Saint Anthony's Wellness Center in the Alton Square Mall. For directions call the Wellness Center at 462-2222. Please join us July 7th at 6:30 p.m. where Sandi Blanchard will speak on Love & Learning, a language and reading program for infants and toddlers with Down syndrome to develop vocabulary, pronunciation, comprehension skills, and reading skills. Also in this issue, is a newspaper article on Sandi's son: Joshua's Story.

Enclosed is the Down Syndrome Association of Greater St. Louis Parent to Parent pamphlet. Parent to Parent support provides the opportunity for parents who's child has been diagnosed with Down syndrome to gain confidence and knowledge by sharing experiences with other parents who have made adjustments to life with their own child. The Riverbend Down Syndrome Association is a chapter of the Down Syndrome Association of Greater St. Louis.

STARNet Events
August 19th 9:00 a.m. - 3:30 p.m. STARNet Family Conference 2000. Plant the Seeds... Watch Your Child Bloom. Location: Shrine of Our Lady of the Snows, Belleville, IL. Registration fee: $10/person or $15 per couple. Scholarships available for families of children 3-8 who live 60+ miles from Belleville.

blank.gif  For further further information, contact Sharon Gage, 387-8930, ext. 169 for rates, questions, or reservations.

Federal law requires that families have a voice regarding the provision of early intervention services in each state. Travel expenses are reimbursed for all committee members. Please consider assisting our state in providing quality early intervention services for our children by serving on one of the following Illinois Interagency Council on Early Intervention (IICEI), which is an advisory body to the Bureau of Early Intervention of the Department of Human Services.

  1. The Human Resources Committee provides recommendations regarding training, personnel qualifications and standards. Contact: Therese Wehman (630) 617-3231.
  2. The Public Awareness Committee makes recommendations to increase public awareness of early intervention services. Contacts: Brazilian Thurman (815) 758-8149, Ext. 230.
  3. The Family Committee provides an opportunity for families to provide direct input before the council meeting on a variety of intervention issues that have been raised by family members. Contact: Anne Cutler (312) 413-1849.
  4. The Systems Committee makes recommendations for overall systematic issues in the design of the early intervention system, e.g., quality assurance. Vacant.
  5. The Finance Committee makes recommendations regarding funding/reimbursement issues. Contact: Ruth Drye (815) 789-7203.

moonlight is the newsletter of the Riverbend Down Syndrome Association. It is made possible by the William M. BeDell Achievement and Resource Center, 400 South Main, Wood River, IL 62095, (618) 251-2175.

Editor: Victor Bishop
Web Site: http://www.riverbendds.org/

Down Syndrome Articles
Joshua's Story. Early Intervention can overcome developmental problems by Mark Raeber, Staff Writer. © The Herald Colombia. March 22, 2000, p. A1 and A3.

     Joshua Blanchard is a miracle baby.
     His parents, Sandi and Glenn Blanchard of Columbia, had been trying for 10 years to have a baby before he was born on Dec. 27, 1997. But five months after they learned their dreams were coming true, they had the shocking discovery their son would be born with Down syndrome.
     But it did not matter to them. Having a son was more important than any obstacles Joshua might face later in life.
     "No matter what, this is my baby," Sandi told her doctors. "I am going to treat him just as I would any other child. He is no different to me because of the Down syndrome."
     Among the earliest challenges was heart surgery in Joshua's second month of life to repair holes where the heart did not close properly. Another problem was weight gain; he had a hard time putting calories on, so special medications were given.
     "We did not know of his heart condition until he was born because it did not show up on ultrasound tests," Sandi recalled. "I could not have cried any harder. I thought we were going to lose him, and it had taken us 10 years to get him.
     "But a nurse at the hospital sent us a special card in which she told us, 'Your baby is a blessing. You will see.' He has been nothing but a blessing. He captures everybody's heart and he has a wonderful personality."
     Sandi, 38, quit her job when Joshua was born and today is self-employed selling specialty candles from her home. Glenn, 41, is a critical care technician at Barnes Jewish Hospital in St. Louis. Originally from New Orleans, the Blanchards moved to Fenton, Mo., when Glenn went to work at the hospital. They had tried repeatedly and unsuccessfully to conceive a baby when they found out about an Illinois law mandating that insurance companies cover infertility treatments.
     With that ray of hope, they moved to Columbia five years ago, and Joshua was conceived through in vitro fertilization. It was the couples' fourth attempt and the last allowed under their insurance coverage.
     As soon as Joshua was born, the Illinois Department of Child and Family Services contacted the family and, the day after he was brought home a nurse was at the Blanchard's door to conduct an assessment.
     "She told us about Child and Family Connection and it has been a godsend," Sandi said. "I feel I am a strong parent, but no matter who you are, or how strong you are, any parent who has a child with special needs must have some sort of help."
     The help the Blanchards received started with therapy at home in the first four months of Joshua's life.
     "The therapists have done a fabulous job with Joshua," Glenn said. "They have made several recommendations. Some work and some don't, but we keep trying until we find things that do."
     Joshua has difficulty with maneuverability because his muscle tone is lacking. Through the agency's help, he has been fitted with a body suit to support his torso.
     "He wears the suit three times a day to improve his posture," Sandi explained. "It helps him walk, which also should lead to improvements in muscle tone."
     Also, because the palms of his hands do not have a natural curve — typical of someone with Down syndrome — a special glove-like device was created to improve the pincer motion of his thumb and fingers.
     "At first, therapists came to our house four times a week," Sandi explained. "Then the visits were reduced to twice a week."
     The therapies Joshua receives cost up to $2,000 a month, but it is all paid for through participation in the programs of the Child and Family Connection. The Blanchards also were notified recently that Joshua will receive $500 per month in state support until he reaches 18 years of age.
     "We moved in order to have a baby but now we love it; there is so much help over here. Illinois is a much more progressive in terms of helping special needs children," Sandi said.
     Joshua recently was enrolled in the Mamie O. Stookey School for the Developmentally Disabled in Belleville, where the twice-weekly therapies continue. And now he also gets a half-hour of speech therapy as well.
     "Because he is an only child, the school is great," Sandi observed. "It allows him to have interactions with other children — some of whom have Down syndrome and some who have other developmental difficulties. They help each other, and that is what makes the program so wonderful.
     "Joshua speaks well compared to older children who have Down syndrome, and he actually helps some of them with their speaking. At the same time, others are helping him learn to play and interact with children.
     "It is good for him to get out of the house and to be with somebody else, too. It is getting him used to going to school, which he will start when he turns three," she said.
     Assessments of Joshua's capabilities are conducted every six months. Today he is judged to be at an age-appropriate level on receptive measurements (he understands what is being said to him) but he lags somewhat on expressive measurements (the ability to make himself understood).
     "Joshua was dealt a very minor case of Down syndrome, and is very fortunate to be where he is," Sandi said. "He functions well with other children and, developmentally, he is doing well. We may have to work on the physical side of it, but we can do that. He is a hard worker.
     "It is our responsibility to put everything we can into him to be the best achiever he can be. If he realizes it doesn't matter that he has Down syndrome and he can do anything, then he will be able to function in society," Sandi said.
     "He really shocks a lot of people with the things he is capable of doing. He also knows he is a ham," Glenn pointed out.
     At 27 months of age, he can count to 13, he knows the entire alphabet, he can distinguish between colors, and he can read words such as yellow, apple and car. He especially knows the meaning of the word hug.

New Medical Listing for Evaluating Down Syndrome in Adults. http://www.ssa.gov/enews/disability/enewsdib62000.htm

New rules for evaluating Down syndrome in adults became effective June 19, 2000. Current regulations only include a listing for evaluating Down syndrome in children. Until now, claims for adults involving the mental and physical impairments associated with Down syndrome were evaluated under other medical listings. The new adult rules consider the lifelong impact and severity of this disorder and are designed to simplify and expedite the adjudication of claims. For more information, check out the Federal Register of May 19, 2000.
Federal Register: May 19, 2000 (Volume 65, Number 98)
Rules and Regulations. Page 31800-31802. From the Federal Register Online via GPO Access [wais.access.gpo.gov]

Social Security Administration
20 CFR Part 404
Regulations No. 4
RIN 0960-AF03
Addition of Medical Criteria for Evaluating Down Syndrome in Adults AGENCY: Social Security Administration (SSA).
ACTION: Final rule.
SUMMARY: We are adding a new listing to evaluate non-mosaic Down syndrome in adults. Our current regulations only include a listing for evaluating Down syndrome in children; we evaluate claims filed by adults with Down syndrome under other listings. We are establishing a separate adult listing for this disorder to acknowledge its lifelong impact and severity. We expect that these final rules will simplify and expedite our adjudication of claims filed by adults with non-mosaic Down syndrome.
DATES: These rules are effective June 19, 2000.
FOR FURTHER INFORMATION CONTACT: Michelle Hungerman, Social Insurance Specialist, Office of Disability, Social Security Administration, 3-A-9 Operations Building, 6401 Security Boulevard, Baltimore, Maryland, 21235-6401, (410) 965-2289, TTY (410) 966-5609. For information on eligibility, claiming benefits, or coverage of earnings, call our national toll-free number, 1-800-772-1213 or TTY 1-800-325-0778.
     We pay disability benefits under title II of the Social Security Act (the Act) to disabled individuals who are insured under the Act. We also pay child's insurance benefits based on disability and widow's and widower's insurance benefits for disabled widows, widowers, and surviving divorced spouses of insured individuals. In addition, we make Supplemental Security Income (SSI) payments under title XVI of the Act to persons who are disabled and who have limited income and resources. For adults under both the title II and title XVI programs, and for persons claiming child's insurance benefits based on disability under title II, "disability" means that an impairment(s) results in an inability to engage in any substantial gainful activity. Disability must be the result of any medically determinable physical or mental impairment(s) that can be expected to result in death or that has lasted or can be expected to last for a continuous period of at least 12 months.
     Although the listings are contained only in part 404, we incorporate them by reference in the SSI program by Sec. 416.925 of our regulations. The listings are divided into part A and part B. We apply the criteria in part A when we evaluate impairments in adults, that is, persons age 18 or over. The listings in part A describe, for each of several major body systems, impairments that are considered severe enough to prevent a person from doing any gainful activity.
     As a result of medical advances in disability evaluation and treatment, and program experience, we are required to periodically review and update the listings. In the Notice of Proposed Rulemaking (NPRM) we published in the Federal Register (64 FR 55215) on October 12, 1999, we indicated that we would review these rules on July 2, 2001. However, based on our experience adjudicating claims filed by adults with non-mosaic Down syndrome, we believe that these rules will continue to be valid for our program purposes after that date. Therefore, these rules will be in effect for 8 years after the effective date, unless we extend them, or revise and issue them again.

Explanation of Final Rules
     Aside from the change in the date on which these rules will no longer be effective, which we discussed above, we have made no changes from the proposed rules. We are adding a new listing to evaluate claims filed by adults who have non-mosaic Down syndrome. Since 1990, we have evaluated claims filed on behalf of children who have non-mosaic Down syndrome under listing 110.06, but we have not had a Down syndrome listing for adults. Instead, we evaluate most of these claims under listing 12.05-Mental Retardation—which requires measurement of intellectual functioning. Almost all adults with Down syndrome also have moderate to severe musculoskeletal abnormalities, and many have other impairments, including cardiac, gastrointestinal, oral/facial and skeletal abnormalities. We also evaluate the physical impairments that such individuals may have under the appropriate body system listings.
     For children, current listing 110.06 represents what we have known for some time: that when we obtain appropriate evidence, virtually all individuals who have non-mosaic Down syndrome will be found disabled under our rules. Therefore, listing 110.06 is met by showing that the individual has Down syndrome (excluding mosaic Down syndrome) that has been established by clinical findings, including the characteristic physical features, and laboratory evidence, including chromosomal analysis.
     When listing 110.06 is met, disability is established from birth. In recognition of the fact that non-mosaic Down syndrome rarely, if ever, improves to the point that an individual would not meet our definition of disability, we are adding a corresponding listing in part A. We expect that this listing will simplify and expedite our adjudication of cases filed by adults with non-mosaic Down syndrome. We also expect that these rules will simplify and expedite the process of performing disability redeterminations at age 18 for individuals who are eligible for SSI as children on the basis of non-mosaic Down syndrome. Although it is the only listing in section 10.00, we are numbering the new listing as listing 10.06, to correspond to listing 110.06 in part B.
     As in the childhood listing, final listing 10.06 provides that an individual age 18 or older who has non-mosaic Down syndrome established by clinical and laboratory findings, including chromosomal analysis, is considered disabled from birth. The new sections 10.00A and 10.00B in the preface to the listing provide rules for documenting non-mosaic Down syndrome. These rules are similar to those in the corresponding sections of the part B listing, 110.00A and 110.00B. Final 10.00A includes a provision similar to one in current 110.00A.2, which states that an individual with Down syndrome is considered disabled from birth. We included this provision in the final rules for adults to establish that the 12-month duration requirement has been met.
     As we have done in part B of our listings, we are excluding mosaic Down syndrome from the listing. Mosaic Down syndrome is a rare form of the condition that is manifested in a wide range of impairment severity. The condition can be profound and disabling, but it can also be so slight as to go undetected. Therefore, it would not be appropriate to conclude that mosaic Down syndrome is always disabling. However, we will still find individuals with mosaic Down syndrome disabled if their impairments meet or are medically equivalent in severity to the requirements of other listings. An individual whose mosaic Down syndrome is "severe" but whose impairment(s) do not meet or medically equal the requirements of a listing may also be found disabled at the fifth step of the sequential evaluation process, based on an assessment of his or her residual functional capacity and consideration of his or her age, education, and work experience.
     Finally, we are adding a new section 10.00C. This paragraph provides guidance for evaluating other chromosomal abnormalities.

Other Changes
     Section 10.00 of part A of the listings was reserved for future use. We are now adding a new preface (10.00A, 10.00B, and 10.00C) and new listing 10.06 in this section. For this reason, and because Down syndrome often has physical as well as mental effects, we are adding the heading "Multiple body systems" for this section. We are also making minor editorial changes to the introductory text and table of contents to part A of appendix 1, to reflect the provisions of the final rules.

Public Comments
     In the NPRM, we provided the public with a 60-day comment period. In response to the NPRM, we received comments from 20 commenters. Most of the comments came from individuals, many of whom have family members with Down syndrome. These commenters supported the proposed rules, without any suggested changes. Several comments came from interested organizations, including the National Down Syndrome Congress, the National Down Syndrome Society, the Arc of the United States, and the Joseph P. Kennedy, Jr., Foundation. Other comments came from the State agencies that make disability determinations for us.
     All of the commenters supported the addition of an adult listing for evaluating non-mosaic Down syndrome. The summaries of the significant comments we received and our responses to them follow. We have tried to summarize the commenters' views accurately, and have responded to all of the significant issues raised that are within the scope of the proposed rules.
     Comment: Commenters from a State agency that makes disability determinations for us agreed that including a separate listing for evaluating non-mosaic Down syndrome in adults was a good idea that would help simplify the adjudication of these cases. Two commenters from a State agency asked us to consider additional revisions to the listings to include other genetic disorders. One of these commenters specifically suggested we add a listing for evaluating Lowe's syndrome.
     Response: We have not adopted the comment. Lowe's syndrome is a genetic disorder that primarily affects the eyes, brain, and kidneys. As with most genetic disorders, the physical stigmas and the degree of mental retardation associated with Lowe's syndrome vary widely. Therefore, we cannot conclude that the impairment is always of listing-level severity. Section 10.00C of these final rules provides that genetic disorders other than non-mosaic Down syndrome should be evaluated under the listings for the affected body system. We believe that this section will allow us to evaluate appropriately the effects of other genetic disorders, including Lowe's syndrome.
     Comment: One commenter indicated that laboratory testing for Down syndrome is generally done at birth or soon thereafter. This commenter stated that, since the listing would apply to individuals who are at least 18 years old, the result of any laboratory testing might be difficult to obtain due to the passage of time. The commenter questioned what type of medical evidence could be used to establish the diagnosis under the provisions of section 10.00B of these final rules. The commenter also asked if SSA would pay for chromosomal analysis if needed.
     Response: Section 10.00B of the final rules provides that, in lieu of a copy of the actual laboratory report, medical evidence that is persuasive that a positive diagnosis has been confirmed by an appropriate laboratory testing, at some time prior to evaluation, is acceptable documentation of the existence of non-mosaic Down syndrome.
     Under this provision, the file must contain an acceptable reference to the fact that testing was conducted and the results of that testing. The referenced results must be consistent with other evidence in file, e.g., the description of the usual abnormal physical findings, the individual's educational history, or the results of psychological testing, if performed. Generally, this information will give us sufficient evidence to establish the diagnosis. However, in the unusual case in which it becomes necessary, SSA can purchase the appropriate blood test.
     Comment: Another commenter from a State agency that makes disability determinations for us agreed that this listing will assist in the adjudication of adult cases, age-18 redetermination cases, and continuing disability review (CDR) cases. This commenter asked whether we could revise the listing to indicate that medical improvement is not expected and that the cases adjudicated under listing 10.06 be diaried for 7 years.
     Response: After we find that an individual is disabled, we must evaluate his or her continued eligibility for benefits from time to time. SSA issues guidelines on how to schedule these reviews through internal operating instructions in our Program Operations Manual System (POMS). We will consider the guidelines recommended by the commenter when we issue POMS instructions on how to schedule CDR diaries for adults found disabled based on non-mosaic Down syndrome.
     Comment: One commenter representing an interested organization expressed support for adding a new listing to provide for the evaluation of Down syndrome for adults. This commenter urged SSA to provide training to all adjudicators when these rules become final.
     Response: We agree with the commenter's recommendation. In accordance with our usual practice, we will conduct training for all adjudicators after the final rules are published.
     For the reasons given in our responses to the comments on the proposed rules, we have not made further changes to the text of the proposed rules. Other than the one change discussed above, we are publishing the proposed regulations as final regulations.

Regulatory Procedures
Executive Order 12866
     We have consulted with the Office of Management and Budget (OMB) and determined that these final rules do not meet the criteria for a significant regulatory action under Executive Order 12866. Thus, the final rules were not subject to OMB review. We have also determined that these final rules meet the plain language requirement of Executive Order 12866 and the President's memorandum of June 1, 1998 (63 FR 31885).

Regulatory Flexibility Act
     We certify that these final rules will not have a significant economic impact on a substantial number of small entities because they only affect individuals. Therefore, a regulatory flexibility analysis, as provided in the Regulatory Flexibility Act, as amended, is not required.

Paperwork Reduction Act
     These final rules impose no reporting/ record keeping requirements necessitating clearance by OMB.
(Catalog of Federal Domestic Assistance Program Nos. 96.001, Social Security-Disability Insurance; 96.002, Social Security-Retirement Insurance; 96.004, Social Security-Survivors Insurance; 96.006, Supplemental Security Income)
List of Subjects in 20 CFR Part 404
     Administrative practice and procedure, Blind, Disability benefits, Old-Age, Survivors and Disability Insurance, Reporting and record keeping requirements, Social Security.
     Dated: May 3, 2000. Kenneth S. Apfel, Commissioner of Social Security.
     For the reasons set out in the preamble, we are amending part 404, subpart P, of chapter III of title 20 of the Code of Federal Regulations to read as follows:


  1. The authority citation for subpart P of part 404 continues to read as follow:
    Authority: Secs. 202, 205(a), (b) and (d)-(h), 216(i), 221(a) and (i), 222(c), 223, 225, and 702(a)(5) of the Social Security Act (42 U.S.C. 402, 405(a), (b) and (d)-(h), 416(i), 421(a) and (i), 422(c), 423, 425, and 902(a)(5)); sec. 211(b), Pub.L. 104-193, 110 Stat. 2105, 2189.
    Appendix 1 to Subpart P of Part 404--[Amended]
  2. Appendix 1 to subpart P of part 404 is amended as follows:
    1. Item 11 of the introductory text before Part A of appendix 1 is revised.
    2. The Table of Contents for part A of appendix 1 is amended by adding section 10.00.
    3. Section 10.00 is added to Part A of appendix 1.
Appendix 1 To Subpart P of Part 404—Listing of Impairments
  1. Multiple Body Systems (10.00): June 19, 2008, and (10.00): July 2, 2001. Part A
  1. Down syndrome (except for mosaic Down syndrome (see 10.00C)) established by clinical findings, including the characteristic physical features, and laboratory evidence is considered to meet the requirement of listing 10.06, commencing at birth.
  2. Documentation must include confirmation of a positive diagnosis by a clinical description of the usual abnormal physical findings associated with the condition and definitive laboratory tests, including chromosomal analysis. Medical evidence that is persuasive that a positive diagnosis has been confirmed by appropriate laboratory testing, at some time prior to evaluation, is acceptable in lieu of a copy of the actual laboratory report.
    Father's Journal
    Father's Day Apology
    Mi hijo, When you were three, you would jump in bed and count to 20, whereupon I would hoist you on my shoulders. You reviewed the language and came to the conclusion that eleven had to be eleven-teen.
    No adult taught you that and I realize now that you deduced and applied a grammatical rule for numbers greater than 10. Not your error, for English is irregular. Always remember that your papá was very proud of you.
  3. Other chromosomal abnormalities, e.g., mosaic Down syndrome, fragile X syndrome, phenylketonuria, and fetal alcohol syndrome, produce a pattern of multiple impairments but manifest in a wide range of impairment severity. Therefore, the effects of these impairments should be evaluated under the affected body system. 10.01 Category of Impairments, Multiple Body Systems 10.06 Down syndrome (excluding mosaic Down syndrome) established by clinical and laboratory findings, as described in 10.00B. Consider the individual disabled from birth.
Web Wanderings
Geddes Productions. E-mail: software@geddesproductions.com URL: http://www.geddesproductions.com/ produce multimedia language development software for children with special needs. Programs include learning the alphabet, developing sight vocabulary, computer skills (e.g., learning to use a mouse) and early sentence writing programs. These programs are useful for children in general but especially those with Down syndrome, Autism and language delay.