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Statement of

U.S. Public Health Service
Department of Health and Human Services
on the
Special Hearing on Promoting Health for People with Mental Retardation

before the U.S. Senate Committee on Appropriations

Anchorage, AK
March 5, 2001

Senator Stevens and Members of the Committee:

I am Dr. David Satcher, U.S. Surgeon General. I am pleased to appear before you today to discuss the need to promote health for people with mental retardation and to go over the findings of a privately funded literature review by Special Olympics, Inc. and Yale University pertaining to the health needs of people with mental retardation. Thank you for this opportunity.

I appreciate the work of the Special Olympics not only for promoting physical activity among individuals with mental retardation but also for providing opportunities for them to develop their talent and performance and for highlighting their unmet health care needs.

The Data on Persons with Mental Retardation and the Limitations of that Data

In the United States, we estimate that the prevalence of mental retardation ranges from 2 to 7.5 million people. Using the 1994 National Health Interview (NHIS) Disability Supplement, Phase I, to identify people with mental retardation or developmental disabilities, researchers estimated mental retardation prevalence of 3.4 percent for the 0-5 age group, 2.5 percent for the 6-18 age group, and .5 percent for those 19 years of age and older.

Worldwide, there are 170 million people with mental retardation, according to World Health Organization estimates. That's nearly 3 percent of the global population.

In the last 40 years, we have witnessed dramatic change in sentiments regarding those with mental retardation. Public policy and practice with regard to the education and treatment of individuals with cognitive limitations began to change in the 1960s and 1970s. Clinical and administrative practices began to reflect empirical findings that learning and improvements in adaptive behavior were enhanced by treatment in less restrictive community-based residential, training, and work environments as opposed to large, overcrowded, and understaffed institutions.

Since the late 1980's the nation's public health system has formally recognized the health needs of people with disabilities and consequently, has developed programs to address their specific health concerns, and has set goals to eliminate health disparities relative to people without disabilities.

Today, mental retardation is diagnosed using three generally accepted criteria: an IQ that is below 70-75; significant limitations existing in two or more adaptive skills areas, such as communications, self-care, functional academics, and home living; and presence of the condition before age 18. Other skills criteria include community use, self-direction, health and safety, leisure and work.

Our ability to fully assess the prevalence of mental retardation in the United States is limited for several reasons:

  • We lack a surveillance system that targets the health status and needs of people with mental retardation. Existing survey-based public health surveillance in the United States is inadequate for identifying people with mild cognitive limitations.

  • When we launched Healthy People 2010 last year, the nation's health goals and objectives for this decade, it marked the first time we had ever included a full chapter on disabilities. However, due to the limitations in data, we were not able to specifically address the health status, needs and access issues confronting millions of Americans with mental retardation.

  • We published the landmark Surgeon General's Report on Mental Health in December 1999. While it offers a comprehensive view of mental health in the United States based on the best available science and an extensive discussion of mental disorders and problems with stigma and access, it still lacks specific information on persons with mental retardation because of the shortfalls in data.

  • Similarly, the Surgeon General's Report on Oral Health provided a sweeping discussion of the oral health needs in this country with a special focus on oral health needs of persons with disabilities; nevertheless, the discussion of the unique needs of persons with mental retardation was limited due to lack of data.

The Causes/Risk Factors for Mental Retardation

Mental retardation can be caused by any condition that impairs development of the brain before birth, during birth or in the childhood years. Many causes are associated with mental retardation.

It is important to accurately and consistently define mental retardation because of its impact on the prevalence. The most widely used definition comes from the American Association for Mental Retardation (AAMR), which defines mental retardation as the onset of significant limitations in both general intellectual and adaptive functioning during the developmental period, that is, 18 years and under. Although not formally a part of the definition of mental retardation, the APA includes mental retardation in the DSM-IV, classifying it as a mental disorder.

Despite the importance of consistency, mental retardation is not always defined the same way across research studies or service agencies, even within the same state. Some definitions rely solely on IQ scores, others only use adaptive behaviors, while others use a combination of both. Many studies are based on broad categorizations of severity, using labels such as mild, moderate, severe and profound, assigning a corresponding IQ range to each term (mild = 50-55 to 70, moderate = 34-40 to 50-55, severe = 20-25 to 35-40 and profound <20-25.)

The most well-documented approach involves two classifications: cultural/familial and biologic/organic, based on the prevalence or absence of a known organic etiology. Cultural/familial refers to individuals with IQs of 50-70, who do not have any identifiable physiological deficit. They cognitively develop at a slower rate and do not reach the same cognitive levels as the general population.

Those in the organic group have an identifiable physiological deficit and typically have IQs lower than 50, although sometimes individuals with higher IQs in the 50-70 range can be included in this group. It would also include genetic causes such as Down Syndrome.

The Range of Health Problems/Diseases and Conditions Affecting People With Mental Retardation

The health issues for individuals with mental retardation are similar to the health issues for many people with disabling conditions, namely, physical activity, nutrition, access to health care, clinical preventive services, oral health, mental health, and family care giving.

While population based data are unavailable, research using samples of convenience have demonstrated that people with mental retardation are at increased risk for obesity, cardiovascular disease, osteoporosis, seizures, mental illness and behavior disorders, hearing and vision problems, and poor conditioning and fitness. Cohort and group effects, such as those related to institutional experience and residential status, are generally poorly controlled.

In 1991, heart disease was the leading cause of death for people with severe mental retardation.

Overweight and obesity levels in this country have reached epidemic proportions. However, people with mental retardation have been reported to be at a much higher risk for obesity than their peers without retardation. In some studies, up to 46% of individuals with mild mental retardation were obese. There are genetic causes of mental retardation that are associated with obesity, such as Down Syndrome and Prader-Willi Syndrome.

The type of living arrangement was strongly linked to obesity. Higher percentages of obesity were noted among people in community residential environments. Especially troubling was the finding that 55.3% of individuals with mild cognitive limitations residing with their natural families were found to be obese.

These studies also revealed a strong link between obesity and coronary heart disease, cancer, social stigma, and discrimination.

Significantly lower bone mineral density has been reported for a group of people with moderate to mild mental retardation with a mean age of 35 years when compared with age-matched controls.

The Unique Impact of Health Problems/Diseases and Conditions Affecting People With Mental Retardation

People with mental retardation face unique health problems resulting in lower life expectancies and lower quality of life.

Life expectancy of people with mental retardation has increased to the extent that younger adults with mental retardation are expected to demonstrate little disparity in longevity; however, for older adults, disparities continue to exist. Specific subpopulations, people with Down syndrome for example, are at increased risk for premature mortality.

A number of studies demonstrate that adults with mental retardation compare unfavorably with their peers without mental retardation in terms of activity, fitness levels, and obesity, resulting in increased risk for disease and poor quality of life, reduced cardiovascular fitness, higher cholesterol levels, reduced muscular strength and endurance, and cardiovascular disease.

As more people with mild cognitive limitations are living in unsupervised environments or are under the occasional care of family members, service coordinators, friends, or other benefactors, there is little opportunity for organized fitness activities specifically targeted at this population.

People With Mental Retardation Suffer Disproportionately from Lack of Access to Appropriate Health Care

Health promotion, disease prevention, early detection and universal access to care are the cornerstones of a balanced community health system. Yet, in each of these areas, individuals with mental retardation face barriers.

Research has demonstrated that many primary care providers are unprepared or otherwise are reluctant to provide routine and emergency medical and dental care to people with mental retardation. Many providers refuse to serve, or limit the number of people served under the Medicaid program, a source of coverage for many people with mental retardation. Dental care for adults is a particularly difficult matter in that, by and large, Medicaid does not cover adult dental care.

For example, many health professionals have little exposure to individuals with mental retardation and, as a result, are sometimes uncomfortable treating them. That is tragic, considering that people with mental retardation have been reported to be at higher risk for behavioral and emotional difficulties than the general population, with prevalence ranging from 20-40%.

In addition, the medical and dental care of those individuals in community-based residences is no longer obtained from a centralized institutional staff but from primary care providers in the community. Increases in the use of community-based primary health care has not been without difficulty and the decentralization of services has brought with it the need for increased personal responsibility in terms of self-advocacy, self-determination and, in many cases, increased care giving responsibilities by families, often life-long care-giving responsibilities. Care-giving responsibility by families become increasingly difficult as the parents become aged or infirmed.

Special Olympics International (SOI) is to be commended for expanding its "Special Smiles" Program into its new Healthy Athletes Initiative. The Health Athletes Initiative works to improve the overall health of each Special Olympics athlete. Through this initiative SOI is increasing public awareness of the health needs of people with mental retardation, increasing their access to care, and training professionals to care for people with special needs.

The Special Smiles program, initiated in 1993, includes a non-invasive oral exam, brushing and flossing instructions, mouthguard fabrication (at selected sites), provision of oral hygiene products, including toothbrush, toothpaste, and floss, and educational materials. Participating athletes benefit from a referral program designed to link people with special needs with dental professionals who are experienced in providing dental care to patients with mental retardation. Since 1993, over 53,000 athletes have been screened during Special Olympic State Games in 36 States and 2 international sites.

Finally, we must point out that few formal connections exist between public health agencies and educational systems and other agencies that serve people with mild cognitive limitations.

Vision for the Future

The greatest barriers to the improvement in health status for people with mental retardation include stereotypes and negative attitudes among the public, governmental agencies, service providers, and, in some instances, among family members. Until the early 1970s, public policy emphasized the segregation of people with mental retardation from the rest of the population -- first for therapeutic reasons and later for the "protection of society."

While we have overcome many of these barriers, we still have a distance to go before we reach our goal. We believe that the quality of life can be better in the future if we strategically focus our efforts in the following areas:

  • Developing and implementing a surveillance system that specifically targets the health status and needs of people with disabilities, including those with mental retardation and other developmental disabilities.

  • Providing for Public Health surveillance of people with mental retardation to track prevalence, health status, risk behaviors, quality of life, and comorbid conditions. Such a surveillance program is challenging given that the nature of the condition limits the participation of the informant, people with mental retardation may not have ready access to a telephone, and people reluctant to disclose mental retardation.
  • When and where possible, and with measurable objectives, tracking the 10 Leading Health Indicators of Healthy People 2010 specifically for people with mental retardation. The first five indicators are lifestyle indicators: physical activity, overweight and obesity, tobacco use, substance abuse, and responsible sexual behavior. The remaining five are health systems indicators: mental health, injury and violence prevention, environmental quality, immunization, and access to health care.

  • Developing and implementing a balanced community-based health system for the mentally retarded. It should balance health promotion, disease prevention, early detection and universal access to care.

  • Exploring ways in which the federal government can be more responsive to the unique challenges and needs of people with mental retardation.

  • As with other areas of disparity in health, the legal implications of the plight of people with mental retardation needs to be better addressed. We should, therefore, work to protect the legal rights of people with mental retardation.

  • The research community should develop a research agenda targeting the problems, needs and opportunities for the mentally retarded. Completion of the human genome project will make it possible to better understand the genetic basis of human development. In addition, it will enable us to better understand the causes that underlie a variety of degenerative and metabolic disorders, including mental retardation.

The theme of the Special Olympics is one that all of us can appreciate -- "Let me win, but even if I don't, let me be brave in my attempt." We are all inspired by the sheer determination and persistence we see in the athletes who participate in the Special Olympics and it is out of that spirit that we must forge ahead toward this vision for the future.

I realize these strategies represent high aims, but we owe it - not only to people with mental retardation but to all Americans - to press forward in a brave attempt to reach them.

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