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DAVID SATCHER, M.D., Ph.D.
U.S. Public Health Service
Department of Health and Human Services
Special Hearing on Promoting Health for People with
before the U.S. Senate Committee on Appropriations
March 5, 2001
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
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
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
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
- 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
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.
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
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
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
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
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
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
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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