June 2000 Issue

In Memoriam:
















Taylor M. Heilman
March 11, 1998-May 13, 2000
blank.gif  Our meetings will be now 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. We thank Saint Anthony's Community Wellness Coordinator Ellie Dralle, R.N., B.S.N. for allocating a monthly meeting time slot for our support group. Please join us Friday, June 2nd at 6:30 for a social meeting. Love and Learning, a reading program for children with Down syndrome, URL: http://www.loveandlearning.com, will be showcased at our July 7th meeting.
We thank Christian Bristol, who gave a violin recital at our last meeting; Christian's mother, Linda; Vera McCoy-Sulentic, head of SIUE's Suzuki program; and Nancy Anderson, Early Childhood Music Specialist [332-3713 or 650-2839, e-mail: naeech3@hotmail.com] who led our children in music play.

Regional Events
Ranken•Jordan Summer Camp 2000 at Temple Israel for children with medical needs ages 2-12.
Session I (14th - 18th) 9:00 a.m. - 4:00 p.m.
Session II (21st - 25th) 9:00 a.m. - 4:00 p.m.
Applications are due by June 5th. A $75.00 deposit is required with each application. The fees for camp will be $175 or $225 per week, based on the medical supervision needs of the camper. Lunch will be provided. The camp offers transdisciplinary staff that possess experience in child development, nursing, occupational therapy, physical therapy, recreational therapy and speech therapy. For more information call Angie Lantz, C.T.R.S., Ranken•Jordan Pediatric Rehabilitation Center, 10621 Ladue Road, St. Louis, MO 63141. (314) 993-1207, ext. 251.

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/


STARnet Illinois Region IV Workshops
June 16th 9:00 a.m. - 12:00 p.m. Unintelligibility in Children: Evaluating and Treating Phonological Disorders. Location: Holiday Inn, Mt. Vernon, IL. Presented by Nancy Swigert, MA, CCC-SLP, director of the speech-language pathology department at Central Baptist Hospital in Lexington, Kentucky. For further information, contact Kathy Hollowich, 387-8930, ext. 170, e-mail: khollow@stclair.k12.il.us.

June 28th 9:00 a.m. - 3:00 p.m. Books for All Children (Birth-Five). Location: St. Clair County Regional Office of Education, Belleville, IL. Presented by Mary Sinker. This workshop will discuss the role of children's books in early literacy; explore the best children's books for infants, toddlers and preschoolers; share ways to evaluate children's books using developmentally appropriate criteria; learn strategies for presenting books to the very young; and introduce books specifically designed to use with students with sepecial needs. For further information, contact Kathy Hollowich, 387-8930, ext. 170, khollow@stclair.k12.il.us.

Resources
The Illinois Section of the American Camping Association (312) 332-0833 has funds available to pay for one week of summer camp per individual. The camper must have a MediPlan card.

Income Tax. Internal Review Bulletin No. 2000-19, May 8, 2000.

Section 213.-Medical, Dental, etc., Expenses
26 CFR 1.213-1: Medical, dental, etc., expenses.
(Also § 262; 1.262-1.)
Medical expenses. Amounts paid by an individual for expenses of admission and transportation to a medical conference relating to the chronic disease of the individual's dependent are deductible as medical expenses under section 213 of the Code (subject to the limitations of that section), if the costs are primarily for and essential to the medical care of the dependent. The cost of meals and lodging while attending the conference are not deductible as medical expenses under section 213.

Rev. Rul. 2000-24
ISSUE
Are amounts paid by an individual for expenses (including transportation costs, registration fee, meals and lodging) of attending a medical conference relating to the chronic disease of the individual's dependent deductible as medical expenses under § 213 of the Internal Revenue Code?

FACTS
Taxpayer A resides in City X and is the parent of B, who is A's dependent. B suffers from a chronic disease and is being treated by physician C.
At C's recommendation and for the purpose of obtaining medical information that may be useful in making decisions concerning B's treatment or in providing care to B, A travels to City Y to attend a conference sponsored by an association that supports research and education concerning the disease. The conference is attended by medical practitioners and individuals with the disease and their families. A spends the majority of A's time at the conference attending sessions that disseminate medical information concerning B's disease. Other sessions at the conference involve presentations or discussions on legal issues, family finances, and other matters commonly arising in families in which a member has the disease. While in City Y, A's social and recreational activities outside of the conference are secondary to A's attendance at the conference. A pays the following expenses in connection with the conference: transportation to City Y, local transportation to the conference site, a registration fee, meals while attending the conference, and lodging at a hotel while attending the conference.

LAW AND ANALYSIS
Section 213(a) allows a deduction for uncompensated expenses for medical care of an individual, the individual's spouse, or a dependent, to the extent the expenses exceed 7.5 percent of adjusted gross income. Section 213(d)(1) provides that medical care means amounts paid for the diagnosis, cure, mitigation, treatment, or prevention of disease, or for the purpose of affecting any structure or function of the body.
Section 1.213-1(e)(1)(ii) of the Income Tax Regulations provides, in part, that the deduction for medical care expenses will be confined strictly to expenses incurred primarily for the prevention or alleviation of a physical or mental defect or illness. Whether an expenditure is "primarily for" medical care is a question of fact. An expense that is merely beneficial to the general health of an individual is not an expense for medical care.
Section 213(d)(1)(B) provides that "medical care" also includes transportation that is "primarily for and essential to" medical care referred to in §213(d)(1)(A). A taxpayer who, for purely personal reasons, travels to another locality to obtain an operation or other medical care prescribed by a doctor may not deduct the costs of transportation under §213. Section 1.213-1(e)(1)(iv).
Section 213(d)(2) provides that the cost of lodging (up to $50 per night) while away from home that is primarily for and essential to medical care (as defined in §213(d)(1)(A)) is an amount paid for medical care if (A) the medical care is provided by a physician in a licensed hospital or a related or equivalent facility, and (B) there is no significant element of personal pleasure, recreation, or vacation in the travel away from home.
Meal expenses are not deductible as expenses for medical care unless they are provided at a hospital or similar institution at which the taxpayer, the taxpayer's spouse, or dependent is receiving medical care. Section 1.213-1(e)(1)(iv) and (v). Section 262 provides that, except as otherwise expressly provided by the Code, no deduction is allowed for personal, living, or family expenses.
In Rev. Rul. 58-533, 1958-2 C.B. 108, the parents of a child who lives away from home at a psychiatric center incur transportation costs to visit the child at regular intervals on the advice of the child's doctors and as an essential part of the child's therapy. The ruling holds that the transportation costs are primarily for and essential to medical care and are deductible under § 213.
By contrast, Rev. Rul. 76-79, 1976-1C.B. 70, holds that a deduction under §213 is not allowed for transportation costs incurred by an individual to take a cruise (upon the recommendation of a physician) on which a group of doctors provide both instructional seminars relating to the individual's medical condition and certain medical services. The seminars are for the preservation of the individual's general health only and the medical services are available in the individual's home town. The ruling holds that the transportation costs are not primarily for and essential to medical care.
In the present case, A travels to the conference in City Y on the recommendation of C, the physician treating A's child B, to obtain medical information that may be useful in making decisions concerning B's treatment or in providing care to B. A spends the majority of A's time at the conference attending sessions that disseminate medical information concerning B's disease. While in City Y, A's social and recreational activities outside of the conference are secondary to A's attendance at the conference. Under these facts, the registration fee paid by A to attend the conference is primarily for medical care, and A's travel is primarily for and essential to medical care. Accordingly, A may deduct the registration fee and transportation expenses under § 213 (subject to the limitations of that section). A may not deduct the cost of meals and lodging while attending the conference because neither A, A's spouse, nor a dependent is receiving medical care from a physician at a licensed hospital or similar institution. See §§ 213(d)(2) and 1.213-1(e)(1)(iv). The result would be the same if A, and not A's dependent, was the individual with the disease.

HOLDING
Amounts paid by an individual for expenses of admission and transportation to a medical conference relating to the chronic disease of the individual's dependent are deductible as medical expenses under § 213 (subject to the limitations of that section), if the costs are primarily for and essential to the medical care of the dependent. The cost of meals and lodging while attending the conference are not deductible as medical expenses under § 213.

EFFECT ON OTHER DOCUMENTS
Rev. Rul. 76-79 is distinguished.

DRAFTING INFORMATION
The principal author of this revenue ruling is Donna M. Crisalli of the Office of Assistant Chief Counsel (Income Tax and Accounting). For further information regarding this revenue ruling, contact Ms. Crisalli on (202) 622-4920 (not a toll-free call).

Section 262.-Personal, Living, and Family Expenses
26 CFR 1.262-1: Personal, living, and family expenses.
Are amounts paid by an individual for expenses (including transportation costs, registration fee, meals and lodging) of attending a medical conference relating to the chronic disease of the individual's dependent deductible as medical expenses under section 213 of the Code. See Rev. Rul. 2000-24, page 963.

Down Syndrome Articles
The chromosome 21 mapping and sequencing consortium. The DNA sequence of human chromosome 21. Nature, May 18, 2000, Vol. 405, 311-9. © 2000 Macmillan Magazines Ltd.

A panel of 62 scientists in Japan, Germany, France, Switzerland, the USA and Britain, show that chromosome 21 encompasses more than 33 million base pairs of DNA, and its publication therefore marks a major scientific milestone. The availability of this sequence will provide valuable tools for investigating the basis of Down syndrome, which is caused by the inheritance of three (rather than the normal two) copies of chromosome 21.

Medical implications for Down syndrome. (p. 317-8) Besides the constant feature of mental retardation, individuals with Down syndrome also frequently exhibit congenital heart disease, developmental abnormalities, dysmorphic features, early-onset Alzheimer's disease, increased risk for specific leukaemias, immunological deficiencies and other health problems. Ultimately, all these phenotypes are the result of the presence of three copies of genes on chromosome 21 instead of two. Data from transgenic mice indicate that only a subset of the genes on chromosome 21 may be involved in the phenotypes of Down syndrome. Although it is difficult to select candidate genes for these phenotypes, some gene products may be more sensitive to gene dosage imbalance than others. These may include morphogens, cell adhesion molecules, components of multi-subunit proteins, ligands and their receptors, transcription regulators and transporters. The gene catalogue now allows the hypothesis-driven selection of different sets of candidates, which can then be used to study the molecular pathophysiology of the gene dosage effects. The complete catalogue will also provide the opportunity to search systematically for candidate genes without pre-existing hypothesis.

Abstract: Chromosome 21 is the smallest human autosome. An extra copy of chromosome 21 causes Down syndrome, the most frequent genetic cause of significant mental retardation, which affects up to 1 in 700 live births. Several anonymous loci for monogenic disorders and predispositions for common complex disorders have also been mapped to this chromosome, and loss of heterozygosity has been observed in regions associated with solid tumours. Here we report the sequence and gene catalogue of the long arm of chromosome 21. We have sequenced 33,546,361 base pairs (bp) of DNA with very high accuracy, the largest contig being 25,491,867 bp. Only three small clone gaps and seven sequencing gaps remain, comprising about 100 kilobases. Thus, we achieved 99.7% coverage of 21q. We also sequenced 281,116 bp from the short arm. The structural features identified include duplications that are probably involved in chromosomal abnormalities and repeat structures in the telomeric and pericentromeric regions. Analysis of the chromosome revealed 127 known genes, 98 predicted genes and 59 pseudogenes.

Web Wanderings
Father's Journal
Look at me in the eye when you speak
At our Down Syndrome Clinic ENT appointment the medical student in attendance made the doctor go into stereotype mode, blinding the doctor who saw tiny ear canals where there were none. Emmanuel is verbal, so the doctor cancelled my son's hearing test.
If only the doctor had spoken to us, instead of the poor medical student, who learned not to see beyond the syndrome.
Hearing Parental Voices: An Opinion Survey on the Use of Plastic Surgery for Children with Down Syndrome. This research project by Marcie Lewis of Brandeis University focused on the possible social and psychological aspects of this controversial procedure from the perspectives of parents of children with Down syndrome.
265 families completed the survey, mean age of child with Down syndrome = 5.9 years, 3 children had undergone plastic surgery, and 8.7% would pursue cosmetic surgery. Parents felt that the final decision about pursing the surgery should be the parent (55.1%), physician (1.1%), child (41.5%).
Further parent opinion survey results are posted at: http://www.bio.brandeis.edu/downsyndrome/

Wrightslaw, http://www.wrightslaw.com provides parents, advocates, educators, and attorneys, accurate, up-to-date information about effective advocacy for children with disabilities. Hundreds of articles, cases, newsletters, and other information about special education law and advocacy can be found in the Wrightslaw Libraries.