JOURNAL OF PEDIATRIC NURSING:
NURSING CARE OF CHILDREN & FAMILIES
Official Journal of the Society of Pediatric Nurses
Vol 17, No 2
EDITORIAL
Surgeon General’s Report on Health Care Needs
for Individuals with Mental Retardation
R ECENTLY, THE SURGEON GENERAL
convened a national forum composed of in-
terdisciplinary experts, consumers, and advocates
to address the health care needs of children, youth,
and adults with mental retardation (MR). The
groundbreaking event resulted in the development
of a national agenda, entitled “Closing the Gap: A
National Blueprint to Improve the Health of Per-
sons with Mental Retardation,” with the goal of
improving the level of health care services pro-
vided to children, youth, and adults with MR. This
report is an important document for all health care
professionals, including pediatric nurses who pro-
vide health care services to infants, children, and
youth with MR. Surgeon General David Satcher,
MD, convened this national forum based on the
recognition that the health care needs of this pop-
ulation are great as he noted, “It became apparent
that as our system of care for those with mental
retardation evolved, our attention to their health
lessened” (US Public Health Service [USPHS],
2001, p. v). This report emphasizes six major
themes: enhance emphasis on wellness and health
promotion; increase the knowledge and under-
standing of health and MR; improve the quality of
health care provided; educate health care profes-
sionals on providing care to individuals with MR;
improve systems of health care financing; and im-
prove the access to health care services.
The barriers to accessing health care for children
and youth with MR have been well-documented.
Some of the barriers related to the health care
system itself include lack of competent profession-
als willing to provide care, insufficient reimburse-
Journal of Pediatric Nursing, Vol 17, No 2 (April), 2002
April 2002
ment for services, growing numbers of children
reliant on the publicly funded Medicaid program,
and the cumbersome system of care that is a chal-
lenge for families to navigate (Schultz, Liptak, and
Kirch, 1998; Smull & Bellamy, 1991; United
States General Accounting Office, 1998; USPHS,
2001). Other barriers include inadequate attention
to primary care needs, delays in early identification
of health problems resulting in more serious prob-
lems and complications, communication barriers
encountered with health care providers, limited
amounts of program materials and communication
in threshold languages, and inconsistent applica-
tion of best treatment practices. The widespread
problems associated with meeting the health care
needs of individuals with MR are exacerbated by
significant societal changes such as increased life
expectancy and the changes in the public service
programs that emphasize more community-ori-
ented services and approaches (Batshaw, 1997;
Sawyer, Collins, Bryan, Brown, Hope, & Bowes,
1998; Schauffler & McMenamin, 1999; Senate Se-
lect Committee on Developmental Disabilities and
Mental Health, 1998, Presidential Task Force on
Employment of Adults with Disabilities, 1998).
This report has significant implications for pe-
diatric nurses who are clinicians, educators, re-
searchers, administrators, and policymakers. This
is the time for all pediatric nursing stakeholders to
access, read, and respond to this new national
Copyright 2002, Elsevier Science (USA). All rights reserved.
0882-5963/02/1702-0001$35.00/0
doi:10.1053/jpdn.2002.125450
79
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agenda for individuals, including children and
youth with MR and their families. The full report can
be accessed online at http://www.surgeongeneral.
gov.
GOALS AND ACTION STEPS TO IMPROVE
THE HEALTH OF PERSONS WITH MR
Goal 1: Integrate Health Promotion into
Community Environments of People with
Mental Retardation
Action Steps:
1. Educate and support individuals with MR, their
families, and other caregivers in self-care and
wellness.
2. Develop and implement strategies for reducing
care burdens for families of individuals with
MR and reducing high rates of turnover in non-
family caregivers.
3. Protect the health of individuals with MR from
occupational hazards.
Goal 2: Increase Knowledge and
Understanding of Health and Mental
Retardation, Ensuring that Knowledge is
Made Practical and Easy to Use
Action Steps:
1. Enable individuals with MR, their families, and
their health care providers to partner with pro-
fessional investigators in identifying health re-
search priorities and in designing and imple-
menting research relating to health and MR.
2. Develop a national research agenda that identi-
fies gaps in existing scientific knowledge re-
lated to health and MR including methodologic
challenges, priorities, feasibility, and timetables
for achieving priority research.
3. Collect data on the health status of persons with
MR in relation to the utilization, organization,
and financing of the health services.
4. Review current ethical and legal protection of
human research subjects as they relate to indi-
viduals with MR. Revise these rules as neces-
sary to facilitate the participation of person with
MR in clinical trails and other types of research,
with full protection of their autonomy, health,
and safety. Ensure that individuals, their fami-
lies, their health care providers, and their advo-
cates participate as partners in reviews and re-
visions of these rules. Ensure their participation
in Institutional Review Board reviews of re-
search proposals related to MR.
SURGEON GENERAL’S REPORT
5. Increase the number of investigators trained in
health and MR research.
6. Enhance the visibility of health and MR re-
search.
Goal 3: Improve the Quality of Health
Care for People with Mental Retardation
Action Steps:
1. Identify priority areas of health care quality
improvement for persons with MR.
2. Identify, adapt, and develop standards of care
for use in monitoring and improving the quality
of care for individuals with MR.
3. Ensure that the practice, organization, and fi-
nancing of health care services for individuals
with MR promote improvement in their quality
of care
4. Establish local, regional, and national awards
that recognize excellence in providing health
care to individuals with MR.
Goal 4: Train Health Care Providers in the
Care of Adults and Children with Mental
Retardation
Action Steps:
1. Integrate didactic and clinical training in health
care of individuals with MR into the basic and
specialized education and training of all health
care providers.
2. Support development and dissemination of ef-
fective training modules in interdisciplinary
practice. Design modules to include social
workers, family members, individuals with MR,
and others, when relevant, such as teachers,
personal care attendants, job counselors, and
front-line office staff.
3. Develop methods of evaluating and improving
health provider competence in the health care of
individuals with MR. These methods should be
based on appropriate standards of care, includ-
ing care that reflects understanding and respect
for diverse cultures, and should be used to eval-
uate the competence of students and practicing
providers and to provide feedback and reevalu-
ation of their performance.
4. Develop, evaluate, and disseminate continuing
education curricula for health care providers at
all levels of practice in the care of individuals
with MR. Such curricula should be based on
appropriate standards of care and include train-
SURGEON GENERAL’S REPORT
ing opportunities that reflect understanding and
respect for diverse cultures.
Goal 5: Ensure that Health Care Financing
Produces Good Health Outcomes for Adults
and Children with Mental Retardation
Action Steps:
1. Determine relationships among diverse financ-
ing mechanisms, service packages, and health
outcomes for individuals with MR. Use findings
to ensure accountability of flexible arrange-
ments for financing services.
2. Use appropriate definitions of “effective,”
“cost-effective,” and “health outcomes” in re-
search, organization, and financing of health
care for individuals with MR.
3. Identify a package of health care services for
individuals with MR that will produce good
outcomes in terms of health maintenance, man-
agement of illness, functionality, and life goals
across the individual’s lifespan.
4. Evaluate models for leveraging health dollars to
maximize purchasing power by and for individ-
uals with MR. Ensure that individuals’ cover-
age and access to primary and specialty health
care and support services are not eroded by
revisions in purchasing practices and policies.
5. Explore strategies to offset financial costs to
providers and health services programs that are
associated with meeting specialized needs of
patients with MR.
REFERENCES
Batshaw, M. (1997). Children with Disabilities, ed 4. Balti-
more, MD: Paul H. Brookes.
Schultz A., Liptak, G., & Kirch, A. (1998). Helping adoles-
cents who have disabilities negotiate transitions to adulthood.
Issues in Comprehensive Pediatric Nursing, 21, 187-201.
Senate Select Committee on Developmental Disabilities and
Mental Health. (1998). Improving the Quality of Community-
Based Services and Supports in California for Persons with
Developmental Disabilities. Sacramento, CA: Author.
Smull, M., & Bellamy, G. (1991). Community services for
adults with disabilities: Policy challenges in the emerging sup-
port paradigm In L. Meyer, C. Peck, & L. Broun (Eds.), Critical
Issues in the Lives of People with Severe Disabilities (pp.
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Presidential Task Force on Employment of Adults with Dis-
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Employment of Adults with Disabilities. Washington, DC: Au-
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81
Goal 6: Increase Source of Health Care
Services for Adults, Adolescents, and
Children with Mental Retardation, Ensuring
that Health Care is Easily Accessible for
Them
Action Steps
1. Increase the number of physicians, dentists,
clinical psychologists, and allied health care
professionals who have appropriate training and
experience in treating adults, adolescents, and
children with MR, including those from socio-
economically and linguistically diverse com-
munities.
2. Make access to health care services less com-
plicated for individuals with MR and their fam-
ilies and caregivers, whether in urban, rural, or
remote communities.
3. Integrate health care services for individuals
with MR into diverse community programs.
4. Expand the types of health professionals used in
providing health care to individuals with MR,
including geriatric, pediatric, and other nurse
practitioners and nurses, physicians assistants,
dental hygienists, and behavioral therapists.
5. Support supplementary services to help physi-
cians, dentists, psychologists and other provid-
ers, and organized health services in providing
care to individuals with MR.
6. Ensure that adaptive equipment and assistive
technologies are available in urban, rural, and
remote communities for use at clinical sites
where individuals with MR receive health care.
7. Ensure continuity of health care service through
the life of an individual with MR.
Cecily Lynn Betz, PhD, RN, FAAN
Editor
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Schauffler, H., & McMenamin, S. (1999). Baseline: 1997: A
survey of Medi-Cal Managed Care Plans in County Organized
Health System and Two-Plan Counties. Sacramento, CA: Medi-
Cal Policy Institute.
United States General Accounting Office (1998). Social Se-
curity Disability Insurance: Multiple factors affect beneficia-
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U.S. Public Health Service. (2001). Closing the Gap: A
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Mental Retardation. Report of the Surgeon General’s Confer-
ence on Health Disparities and Mental Retardation. Washing-
ton, DC: US Government Printing Office.