Congress Examines ‘Troubling Trends’
Seen In
Several Childhood Disabilities

Reprinted with permission from CD Publications, “Children & Youth Funding Report”, October 20, 1999. For a free sample issue, call (301) 588-6380.

(CDP) - The House Health subcommittee examines what Chairman Bilirakis (R-Fla.) calls “deeply troubling trends” in the rates of childhood disabilities and diseases and debates what Congress can do to reverse them.

Bilrakis cites “a near epidemic” of childhood asthma, the increasing prevalence of autism (the third most common developmental disorder affecting children) and diabetes, which affects millions of children and has no cure. Complicating the picture is about half of children available for adoption have developmental disabilities, making them likely to wind up on public welfare.

Witnesses describe these problems:

Pediatric Asthma

Pediatric asthma is on the rise, says pediatrician Meyer Kattan of Mt. Sinai School of Medicine in New York. It’s up 160% between 1980 and 1994, with three-fourths of victims requiring life-long treatment and monitoring.

Kattan is frustrated because even though tools exist for children to manage their asthma, the nation is not yet successfully sharing tools and information with all children.

The big step, in Kattan’s view, is developing a federal asthma plan to coordinate public and private activities. It should include four federal agencies already involved: the Education Department, the Environmental Protection Agency, HHS and the Housing and Urban Development Department.

American Thoracic Society, 1726 M Street NW, Suite 902, Washington, DC 20036-4502; 202-786-3355; http://www.thoracic.org.

Autism

Actress Rene Russo, a board member of Cure Autism Now (CAN), says autism research is vastly under-funded compared to other major childhood diseases.

“We’ve lost a generation of children,” she says, first because bad parenting was incorrectly identified as autism’s cause and then because autism was considered incurable.

The incidence of autism has risen to 40 per 10,000, affecting 400,000 families.

CAN pushes to create centers of excellence in autism research. A similar center for childhood leukemia boosted the survival rate from 20% to 80%.

CAN cofounder Jonathan Shestack says advocates have established tissue and brain banks to provide materials from autistic patients and victims for scientists seeking cures.

“Researchers need money, time and resources, and we’re providing resources,” he says.

The Autism Statistics, Surveillance, Research and Epidemiology Act (HR 274) would provide $37.5 million over five years for centers of excellence. The Advancement in Pediatric Autism Research act (HR 997) would double autism research funds from $30 million to $60 million. The Biomedical Research Assistance Voluntary Option Act (HR 785) would let taxpayers designate a part of income-tax refunds to support research.

CAN, 5225 Wilshire Blvd., Suite 226, Los Angeles, CA 90036; (310) 255-3955; e-mail: jshestack@artisanenet.com; http://www.canfoundation.org.

NIDS, Box 452, Suffern, NY 10901; (888) 540-4999.

Juvenile Diabetes

Diabetes is the leading cause of kidney failure, adult blindness and non-traumatic amputations, and its victims are two to four times more likely to have strokes, says the Juvenile Diabetes Foundation. “The only remedy is a cure; insulin is not a cure for diabetes,” it says.

The foundation recommends creating a national registry to track the disease, developing regional clinical centers that seek cures and do long-term epidemiological studies to study juvenile diabetes for 10 years or more to delineate “environmental triggers” that might cause the disease.

JDFI, 1400 I Street NW, Suite 530, Washington DC 20005; (202) 371-9746.

Adoptions

President William Pierce of the National Council for Adoption says that the nation faces a “daunting human and fiscal crisis” when considering half of children awaiting adoption require special care.

Early diagnosis and treatment of women with high-risk pregnancies could reduce the number of children born with developmental disabilities, Pierce says.

He urges the subcommittee to:

Provide better data on the incidence and types of disabilities among children in out-of-home care in the public sector, especially in the public welfare system.

Find the extent to which counseling is provided to pregnant women by professionals about the realistic challenges parents of children with disabilities face and the support services available to help them cope with these challenges, ranging from prenatal education and tests to adoption planning.

Stimulate more research on how fetal surgery can produce better results for children diagnosed with conditions that may be ameliorated in utero.

— Wayne Welch

NCA, 1930 17th Street NW, Washington, DC 20009-6207; (202) 328-1200; http://www.ncfa_usa.org.

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