TO: NDSC Members and Affiliated Parent Groups
FROM: Susan Goodman, Director
Governmental Affairs
DATE: January 2, 2008

In this issue:
Kennedy-Brownback bill
Community Choice Legislation
Down Syndrome Research Plan

Briefing on Kennedy-Brownback Legislation

On January 16, 2008, a closed briefing was held for Senate staff members on The Pre-Natally and Post-Natally Diagnosed Conditions Awareness Act (S. 1810), known as the Kennedy-Brownback bill. Representatives from both NDSC and NDSS were invited and attended this briefing. Staff members heard Mia Peterson, self-advocate, and Brian and Michelle Ray, parents of Matthew who has Down syndrome, discussing the quality of information they received before and after the birth of Matthew. According to Mr. Ray, “we know, first hand, what it was like to not be given this critical information and access to resources in a timely and effective manner.” Andy Imparato, of the American Association for Persons with Disabilities (AAPD) provided a cross-disability perspective on the issue of genetic testing.

This meeting was held to brief Senate staff members on S. 1810 before the bill is marked up by the Health Education Labor and Pensions (HELP) committee. The mark-up, which is a process whereby Committee members meet formally to make changes to the bill, is now tentatively scheduled to take place on January 30th. Hopefully, any differences among Senate members can be worked out prior to the mark-up.

We continue to follow this process closely and in consultation with NDSS, tracking, reviewing and discussing minor language changes with Senate staff. Since the legislative process is, by nature, in a constant state of flux, we want to ensure that grassroots efforts will be used when they have the greatest chance of success.

To see the most recent version of the bill that has been introduced, go to: http://thomas.loc.gov and key in S. 1810 in the space for the bill number.

“Community Choice” Legislation

Last week, the Health Subcommittee of the House Energy and Commerce Committee held a hearing on Helping Families with Needed Care: Medicaid's Critical Role for Americans with Disabilities convened by Rep. John Dingell (D.MI),   This hearing focused on the funding of long-term services and supports needed for individuals with disabilities to live community and was focused on the Community Choice Act (S.799) (HR 1621).

Virtually all public funding for long-term services and supports comes from Medicaid. Most adults with Down syndrome qualify for Medicaid based on disability and income. However, it is difficult for individuals to get the support they need because the community supports are considered optional services under Medicaid. This means that although an individual may qualify they will be unable to get publicly-funded supports to live anywhere other than an institutional setting.

What Does the Bill Do? 

The following services can be provided in a community setting such as an individual’s home, with or without a roommate or other integrated setting:

• assistance with activities of daily living (eating, toileting, grooming, dressing, bathing);
• meal planning and preparation, managing finances, shopping, household chores, phoning, participating in community activities; and,
• help to learn, keep and enhance skills to accomplish such activities.

It also allows funding to be distributed in various ways (vouchers, direct cash payments, fiscal agents and agency providers). The choice would be given to the individual with a disability or their authorized representative such as a friend, family member, guardian, or advocate.

It would reward states that give this option to individuals and families by increasing the federal match the state receives from Medicaid.

Prospects for Passage

It will be difficult to pass any new legislation in an election year and in this fiscal climate, particularly legislation that would require new federal spending. However, to accomplish our vision of equal rights and opportunities for people with Down syndrome and creating a national climate in which all people will recognize and embrace the value and dignity of people with Down syndrome we must continue to participate in what can be a slow-moving process.

NIH DEVELOPS DOWN SYNDROME RESEARCH PLAN

The following item was provided by the Department of Health and Human Services Office of Disability:

The National Institutes of Health has developed a research plan to advance understanding of Down syndrome and speed development of new treatments for the condition, the most frequent genetic cause of mild to moderate mental retardation and associated medical problems. The plan sets research goals for the next 10 years that build upon earlier research advances fostered by the NIH.

"Through the years, the NIH research effort has led to increased understanding of Down syndrome," said Elias Zerhouni, M.D., director of the National Institutes of Health. "We are now poised to capitalize on these advances and improve the health of people with Down syndrome."

Down syndrome occurs in 1 out of every 800 births in the United States. Down syndrome most frequently results from an extra copy of chromosome 21 in the body's cells. In most cases, this extra chromosome comes from the mother. In some cases, forms of Down syndrome can result from just having an extra portion of chromosome 21. The chance of giving birth to a baby with Down syndrome increases as women age.

Infants with Down syndrome have certain characteristic physical features, such as short stature, distinctive facial features and are more likely to have health conditions like hearing loss, heart malformations, hypertension, digestive problems, and vision disorders. Although Down syndrome is the most common cause of mild to moderate intellectual disability, the condition occasionally is severe. People with Down syndrome are also much more likely to die from infections if left untreated.

The NIH's National Institute of Child Health and Human Development convened a working group of NIH scientists. Through a public comment process, the scientists listened to comments and suggestions from families of individuals with Down Syndrome, as well as from Down Syndrome research advocacy organizations. The NIH scientists then developed the research plan in collaboration with researchers in the national scientific community.

Among the research objectives identified as priorities over the next 10 years is the need for greater access to laboratory animals with the characteristics of Down syndrome.

The plan cites the need for increased research on the medical, cognitive, and behavioral conditions that occur in people with Down syndrome. These conditions include leukemia, heart disease, sleep apnea, seizure disorders, stomach disorders and mental health problems.

The working group also identified the need to study whether aging has a greater impact on mental processes in people with Down syndrome than in people who do not have Down syndrome. As adults, individuals with Down syndrome age prematurely and may experience dementia, memory loss or impaired judgment similar to that experienced by Alzheimer's disease patients.

The plan summarizes current research efforts by the various NIH institutes studying Down syndrome.

The National Institute of Child and Human Development (NICHD) has supported Down syndrome research since the institute was established in the 1960s. NICHD scientists have bred mice that help researchers study the intellectual disability and dementia that occurs in Down syndrome. The NICHD is currently studying specific genes and gene groups that may play a role in developing Down syndrome. Researchers are also studying the role that the age of the mother's egg plays in developing the disorder.

An NICHD-sponsored study is examining whether individuals with an additional complete copy of chromosome 21 differ as they age from people with only a portion of the extra chromosome. Another long-term study will examine the prevalence of dementia in adults with Down syndrome and whether certain medications, like hormone replacement therapy, slow the aging process in Down syndrome.

Other NICHD-supported projects include devising a weight loss program for adults with developmental disabilities, and a computer program to help children with Down syndrome learn.

The National Heart, Lung, and Blood Institute (NHLBI) is supporting studies of the genes that contribute to heart malformations found in Down syndrome patients. The NHLBI also is supporting investigations of the causes and potential treatments for obstructive sleep apnea, a disorder in which throat tissue blocks the airway during sleep, temporarily shutting off air to the lungs. Obstructive sleep apnea is common in Down syndrome children.

Children with Down syndrome are 10 to 15 times more likely than other children to develop leukemia. The National Cancer Institute is investigating various types of leukemia that affect children with Down syndrome.

Other NIH institutes continue to investigate additional aspects of Down syndrome. The National Institute on Aging is conducting research on ways to treat Alzheimer's disease in people with Down syndrome.

The National Institute of Allergy and Infectious Diseases is studying the significance of two genes recently found in a region of chromosome 21. These genes are involved in the development of the immune response against disease.

The National Institute of Mental Health is investigating rates and possible treatments for mental disorders found with Down syndrome. These include autism, obsessive-compulsive disorder, depression, and psychosis.

The National Institute of Neurological Disorders and Stroke (NINDS) is investigating how the brain is affected by Down syndrome. The intellectual disability seen in people with Down syndrome is caused when neurons die or do not function properly. One NINDS study is investigating the potential role of a specific gene called APP, for amyloid precursor protein. It is thought that disruption of the APP gene may kill neurons by interfering with a growth factor needed for neurons to survive. APP is believed to be related to Alzheimer's disease and may play a role in Down syndrome.

The research plan on Down syndrome "is intended to provide the NIH, and its member Institutes and Centers, with guidelines for prioritizing and coordinating future research related to Down syndrome," wrote the members of the NIH Down syndrome working group in the report.

The working group is moving forward to implement plan objectives. The plan's short-term objectives are expected to be accomplished within the next three years.
The report is available on the NICHD Web site at http://www.nichd.nih.gov/publications/pubs/upload/NIH_Downsyndrome_plan.pdf

The NICHD sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; and medical rehabilitation. For more information, visit the Institute's Web site at http://www.nichd.nih.gov.

The National Institutes of Health (NIH) -- The Nation's Medical Research Agency -- is comprised of 27 Institutes and Centers and is a component of the U. S. Department of Health and Human Services. It is the primary Federal agency for conducting and supporting basic, clinical, and translational medical research, and investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.
 
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This NIH News Release is available online at:
http://www.nih.gov/news/health/jan2008/nichd-22.htm.

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