Summary of the Plenary Session of December 5, 2001:
The plenary session on the first day of the Surgeon General’s Conference on Health Disparities and Mental Retardation provided important background information for the work groups held later that day. Starting with the opening remarks, the presentations set the tone and provided the foundation for the eight separate work group discussions.
For each work group, a moderator introduced the key issues to be addressed, and another expert presented the current state of knowledge. To complement the facts, an individual representing a service program that creatively addressed the issues discussed the program, challenges, and achievements. Brief summaries of the opening remarks and presentations follow.
Duane Alexander, M.D., Director, National Institute of Child Health and Human Development (NICHD)
Dr. Alexander noted that because the NICHD was established by President John Kennedy to lead the Nation’s research effort to improve the health of individuals with mental retardation (MR), he welcomed the Surgeon General’s request to convene the conference. He expressed appreciation to all who would help develop recommendations and to the many Government agencies that supported the effort. Dr. Alexander introduced Dr. Satcher as the moving force behind the Nation’s efforts to address the many health disparities faced by different population groups across the country.
David Satcher, M.D., Ph.D., Surgeon General of the United States
Dr. Satcher described the conference and its outcome as an important example of efforts to move forward in the best interests of the American people following the tragedies of September 11. After recognizing the NICHD and other agencies involved, he pointed out that Surgeon Generals’ reports have enjoyed great credibility with the American public because they are based not on opinion, politics, or religion, but on the best public health science.
This conference complements several top priorities of the Surgeon General’s Office, including health disparities and meeting the health needs of our most vulnerable, the role of the community health system in the struggle for access to care, and identifying and addressing common problems and experiences within our global health community.
The genesis of this conference was the March 2000 field hearing of the Senate Appropriations Subcommittee on access to care for individuals with MR, at which families and self-advocates testified convincingly about the problems they face. The Conference and the Blueprint for action reflect the Surgeon General’s efforts to not only listen but respond with effective programs. The Conference report and its implementation are key to achieving this goal. Noting the caveat with the use of the term “mental retardation,” he asked all participants to judge each other not by the words used to describe the condition but rather by the actions taken to help improve the lives of those with the condition.
Loretta Claiborne, Athlete and Self-Advocate
Ms. Claiborne thanked the Surgeon General for listening to individuals with MR, and expressed her hope that her experiences seeking health care as a child would not happen to others. She credited the Special Olympics with recognizing the urgent health needs of many of their athletes, and pointed out that this conference, with its high rate of involvement by people who have never been listened to before, was different and important.
Bonnie Kerker, Ph.D., Overview Presentation on the Prevalence of Mental Retardation
Dr. Kerker noted that accurate and consistent prevalence data on MR are essential for developing health policies and health care services, and for allocating public funds to address the needs of children and adults with MR.
Current data show that approximately 0.3 to 3.1 percent of the general population, and about 1.1 percent of all children, have MR. Of these individuals, most are classified as having mild MR. Other developed countries report a lower and narrower range of MR than the U.S. Some of the discrepancy in prevalence estimates is due to differences in the way MR is defined and in the types of data used. For instance, MR is commonly defined in three basic ways—on the basis of intellectual functioning alone, intellectual functioning with adaptive behaviors, or intellectual functioning with an identifiable etiology of MR. Likewise, prevalence data may be population-based, including counts of people with MR in an overall population, or the data may be drawn from clinical or administrative sources, meaning that it is based on individuals who access services. Most U.S. prevalence data come from the latter sources; however, such data usually provide less accurate counts because many adults and children with MR may be unable to access care.
Another difficulty lies in the timing and ease of identifying individuals with MR. For example, because of naturally occurring but subtle differences in early developmental patterns, children may not be diagnosed early in life. Those children diagnosed later through the school system, especially those with mild MR, are often lost in followup as adults.
In summary, despite wide ranges in prevalence data, many people in the U.S. and abroad must confront the challenge of MR. The challenge for our Nation begins with more accurately estimating the prevalence of these conditions. This requires using a standardized definition of MR, increasing the use of population-based data that emphasize participation of individuals with MR, and encouraging and helping health care providers to identify both adults and children with MR.
Work Group One: Attitudes of Health Care Professionals
David Coulter, M.D., Moderator
Referring to comments made at the Surgeon General’s Listening Session on Health Disparities and Mental Retardation, Dr. Coulter noted that many family members and self-advocates continue to encounter poor attitudes among health care providers.
Our society assumes health care professionals should provide accessible, comprehensive, family-centered care that is also coordinated, continuous, culturally competent, and respectful of a patient’s choices. Meeting the needs of individuals with MR, however, also requires developing new ways to incorporate the concept of self-determination and patients’ own goals for a healthy life into their care. This requires better training for providers to improve their attitudes and their knowledge of the needs of those with MR.
Listening Session participants also noted that health care providers may reluctantly accept Medicaid recipients or individuals with MR as patients. Provider attitudes also may influence the quality of care delivered to people with MR and reduce direct communication with these patients. For patients who come from different ethnic and cultural groups, provider attitudes may lead to misunderstandings concerning the values and perceptions of health or concerning MR itself.
K. Charlie Lakin, Ph.D., Scientific Presentation
Dr. Lakin discussed the wide range of intellectual ability and health needs of children and adults with intellectual disabilities. Poverty is a key issue for those with intellectual disabilities: adults with these disabilities are three times more likely to live in poverty than other adults in the U.S. Similarly, children with intellectual disabilities are twice as likely to live in poverty as other children. In addition, people with intellectual disabilities are less likely to be insured than the general population.
Despite these facts, data from the National Health Interview Survey show that a majority of people with intellectual disabilities, or their proxies, report their doctor’s thoroughness, respect and attention to privacy, interest in them and their condition, and availability in an emergency to be either “good” or “excellent.”
However, other literature shows that if health care providers lack the experience or specific knowledge, they are reluctant to treat people with intellectual disabilities. Likewise, providers may hesitate to treat patients with intellectual disabilities because of poor experiences in past encounters or because providers are inadequately compensated for the additional time that may be required to care for these patients.
Provider training is key to influencing these attitudes. Research shows providers (or other professionals working directly with patients in a clinical setting) who took a structured training course concerning the health care of individuals with intellectual disabilities had an increased desire or willingness to treat these patients. The attitudes of providers who were trained with only reading or course work did not change.
In summary, the literature reveals that provider attitudes influence access to services. A provider’s willingness to treat people with intellectual disabilities is influenced by public, private, and advocacy groups; access to technical support and professional allies; and evidence that it is financially viable to treat people with intellectual disabilities. In addition, transportation, communication, and other problems commonly experienced by persons with disabilities only increase the challenges faced by providers.
Sharon L. Ramey, Ph.D., Creative Program Presentation
Dr. Ramey shared findings about a unique research program at the Alabama Mother and Family Specialty Center in Birmingham, Alabama. Originally developed to determine whether providing good prenatal care could decrease the rates of low-birthweight and premature babies, the program faced the challenge of caring for many women with intellectual disabilities. In a previous study, about one-third of the mothers with low-birthweight or premature babies had low IQs themselves.
The researchers carefully documented the amount and quality of care each of the 600 women enrolled in the program received during her pregnancy. Mothers received highly tailored prenatal care provided by the same nurse over the course of the program. Instructional videotapes, educational materials, flexible clinic hours, transportation to the clinic, child care during office visits, and participation in a talk show to discuss common questions during pregnancy complemented the care the mothers received.
An evaluation revealed that the tailored program of prenatal care failed to reduce significantly the incidence of low-birthweight or premature babies; however, the program improved the health of the mothers and their knowledge of their bodies, promoting healthy lifestyles and healthy behaviors. In the end, the program and its many components helped to prepare these women, many with low IQs, for the challenging task of motherhood.
Work Group Two: Quality of Health Services
Roxanne Dryden-Edwards, M.D., Moderator
Dr. Dryden-Edwards noted that individuals with intellectual disabilities need specific approaches to health care treatment. Most importantly, to give quality care, providers will need to spend more time with these patients and take advantage of opportunities to learn about a broad range of their needs. Current and future health care professionals will need to be better trained. It will be important that they learn how to provide comprehensive care respectfully, prevent the inappropriate use of medications, and ensure that children receive appropriate followup care as they make their transition into adolescence and adulthood.
K. Charlie Lakin, Ph.D., Scientific Presentation
In reviewing the literature, Dr. Lakin noted that much research concerning the quality of care for individuals with intellectual disabilities targets those living in institutions. In these settings, a wide range of health needs are generally met in a satisfactory manner. However, as the needs of this population become more complex, the need for additional professional training increases.
Interesting data from the National Health Interview Survey also show that children with intellectual disabilities were just as likely to see a doctor within the past year as children without these disabilities. In fact, adults with intellectual disabilities were more likely to see a doctor within the past year than those without such disabilities. One fact also was clear—people with intellectual disabilities have a greater need for specialized health care.
Despite these promising findings, anecdotal evidence suggests that many people with intellectual disabilities fail to have their basic health needs met. Unfortunately, no comprehensive study documents this fact or the technical quality of health services provided. Such studies, with outcome-oriented approaches, must be conducted. These studies, in turn, will provide the foundation for developing quality-of-care guidelines for people with intellectual disabilities. These guidelines should address access to health professionals, health promotion and nutrition, routine monitoring of health care, dental and oral health, and commonly associated health problems. The role and training of support staff also must be addressed.
Nancy N. Cain, M.D., Creative Program Presentation
Dr. Cain discussed Rochester Community-Based Crisis Intervention Services, a program to increase access to psychiatric care for people with intellectual disabilities. The Rochester program has two main components, including a crisis intervention team and a specialized psychiatry clinic. During a crisis, the intervention team works with families and group homes on a short-term basis to help find appropriate care for the adult or child with intellectual disabilities. Program staff are on call for emergency room consultations 24 hours a day, and may be asked to evaluate an individual in the emergency room to determine whether the problem is psychiatric in nature. If so, the team member facilitates a psychiatric admission.
Although the crisis intervention team evaluates both children and adults, currently, only adults are seen in the specialized psychiatry clinic. Adults with intellectual disabilities may be followed on a long-term basis in the clinic. Both medical students and psychiatry residents may train with either the crisis intervention team or in the specialized psychiatry clinic.
A program review revealed that the crisis intervention team and specialized psychiatry clinic have prevented unnecessary hospitalizations, enhanced appropriate community placements, maintained behavioral health, enhanced the expertise of providers working in the community, and increased collaboration between the developmental disability and mental health systems.
Work Group Three: Finding and Getting to Health Care Services
Sheryl White-Scott, M.D., Moderator
Dr. White-Scott discussed what was learned about finding and getting to health care services at the Surgeon General’s Listening Session on Health Disparities and Mental Retardation. Participants highlighted a lack of information concerning the types and location of services, and a definite shortage of appropriately trained health providers. Transportation and access problems exist in both urban and rural settings. Often people face cultural and language barriers, and patient education materials are not geared to individuals with cognitive impairments. Complicating matters, few formal health care standards exist for treating these individuals. Multidisciplinary experts, working across systems, must develop these standards.
Deborah Spitalnik, Ph.D., Scientific Presentation
Dr. Spitalnik discussed key factors influencing an individual’s ability to obtain needed health services. These factors include “access, affordability, availability, and acceptability.” Research in this area is complicated by difficulties in collecting data, lack of comparability across studies, lack of good measures of access, and imprecise definitions of MR.
Unfortunately, poverty is an access issue for many people with MR, who often depend on public support for health care. A recent study of children on Supplemental Security Income (SSI) showed that they frequently received care from a general practitioner without pediatric experience. In addition, children with MR often failed to receive subspecialty care. Additional disparities are related to race, geographic location, and SSI status.
Another problem is that individuals’ health needs are frequently interpreted only in reference to their MR and not in regards to broader issues. Beyond negative perceptions and issues involving stigma, this “diagnostic overshadowing” continues to limit access to appropriate and quality care. Ironically, adults with mild MR may have trouble accessing care because they often have a normal appearance but may have difficulty with compliance, authority, behavioral challenges, and abstract thinking. Together, these characteristics pose significant barriers to care.
Transportation and financing also pose access problems for many individuals with MR. In particular, Medicaid fee-for-service programs may provide financial disincentives for treating individuals with a disability, based on the inherent health care needs of these patients. Medicaid’s managed care programs, however, may offer more protections than these and commercial managed care programs. Many States are moving towards such Medicaid systems.
Ronald Lindsay, M.D., Creative Program Presentation
Dr. Lindsay presented the Ohio Rural Developmental and Behavioral Clinic Initiative. The program was developed in 1995 in response to a needs assessment completed by the Ohio Department of Health. The study identified gaps in coverage, lack of service coordination, lack of information, and unmanageable systems as constraints for individuals with MR to access comprehensive care. Urban counties were also found to have more resources to care for children than rural counties. In response, the State created a new rural initiative. Although the program started with two rural health clinics in two separate counties, the program currently has 37 clinics in eight counties and receives evaluations of children living in 18 other counties.
A key goal is to decrease health disparities for children with suspected MR and developmental disabilities. To accomplish this, two evaluation teams were created: a developmental team for children up to age six and a behavioral team for school-age children. The interdisciplinary teams conduct comprehensive evaluations; both teams have local public health nurses who serve as liaisons between the teams and local communities. The nurses receive referrals from parents and providers, obtain appropriate records, conduct home visits after a child is evaluated, and help to implement the teams’ recommendations. Families play an important role in both the child’s evaluation and treatment.
A program evaluation assessed the first two years of activities, during which 120 children were seen. Children’s clinical charts were reviewed, and parents were interviewed. The evaluators assessed how diagnoses were formed, team recommendations, and the outcome of these recommendations, including whether services were obtained or pursued. The study found that few system barriers exist for families once children are evaluated. In addition, a family’s refusal to pursue services is the chief reason for not obtaining care. Of families that did pursue services, 98 percent successfully obtained the needed care.
While the evaluation showed that the program improved access to diagnostic evaluations, identified previously undiagnosed conditions, aided access to followup care, and met family needs, it also highlighted the need for more outcome and population-based data and ways to improve the acceptance of social recommendations by families.
Finally, the program’s primary challenge remains sustaining a program that is community-based and integrated, providing a seamless system of care. This challenge entails collaborating with local agencies that must share a vision, work together, and integrate their services. The primary challenge is to integrate service delivery, training, technical assistance, consultation, and research.
Work Group Four: Paying for Health Care Services
Daniel Bier, M.P.A., M.S.W., Moderator
Mr. Bier discussed how health care services work in a marketplace, and how reimbursement can promote the best value. The work group would address the relevant themes developed at the Surgeon General’s Listening Session. These include (1) what services should be covered by insurance, (2) the preauthorization process and the definition of medical necessity, (3) co-insurance, and (4) the cost of premiums.
Deborah Spitalnik, Ph.D., Scientific Presentation
Dr. Spitalnik discussed how methodological issues can influence research concerning the financing of care for individuals with MR. These issues include the lack of precise diagnoses and the failure to record diagnoses, as well as the instability of diagnoses within the billing systems and clinical claims data.
For example, Medicaid files were not designed to identify populations with special health needs; however, most people with MR pay for health care through public insurance, whereas only 7.1 percent of adults with MR have insurance through their employer. The inadequate design of Medicaid files means that Medicaid datasets often lack important utilization and reimbursement data concerning the services provided to individuals with MR. These deficiencies hinder research and our understanding of the financing and use of services by this population.
Although children with MR may be insured through their parents’ coverage, commercial insurance often has coverage gaps, high premiums, and no mandate to provide benefit packages to meet their needs. Nonetheless, given the scarcity of good coverage, parents of children with MR frequently will not move or change jobs for fear of losing their health insurance coverage.
Medicare covers 480,000 people with MR, but these beneficiaries differ from the average elderly beneficiary because they are poorer and less likely to be connected to health care providers. Approximately 70 percent of Medicare beneficiaries with MR are also enrolled in Medicaid, which has become the largest financial funding source for health care for people with disabilities. Medicaid covers 1.5 million noninstitutionalized adults with MR and 246,000 institutionalized ones. It provides acute and some long-term care benefits. Although individuals with MR make up only 4.9 percent of the beneficiaries, they use 15.7 percent of Medicaid’s dollars. To reduce health costs, States have a keen interest in switching beneficiaries to Medicaid managed care programs.
Complicating matters, Medicaid has two parts, including mandatory and optional services. Unfortunately, many services deemed optional are critical for people with disabilities and include items such as dental coverage, prescription drug coverage, and long-term care services. States also vary as to whether they mandate that Medicaid beneficiaries enroll in managed care programs. Many Medicaid managed care programs lack claims data and diagnostic information concerning people with MR.
Theodore Kastner, M.D., M.S., Creative Program Presentation
Dr. Kastner presented some general issues related to the provision of primary care and mental health services in Medicaid managed care, and discussed the creation of Developmental Disabilities Health Alliance, Inc., a company providing health care services to persons with developmental disabilities under contract with several health maintenance organizations (HMOs) in New Jersey’s Medicaid managed care system.
Premised on providing high-quality, comprehensive health care to individuals with MR, the program seeks to overcome the limitations of scale by creating a statewide integrated system of care. Several key business assumptions also are built into the program, starting with the notion that the use of capitation helps to better predict future cash flow. In addition, a successful for-profit program will increase choices and competition, improve accountability, and align the business goals with the clinical needs of the patients.
To market the package of services to private HMOs, program officials used familiar business terminology and discussed ways that the new system could better manage disease by providing comprehensive care. Several HMOs were enlisted to broaden the range of payers and to help establish market-based reimbursement for their unique managed care systems. Although obtaining capital was a hurdle, capitation payments proved to be very helpful.
Although relatively young, the company represents an effective way to provide an array of managed care services to individuals with MR, relying on Medicaid reimbursements. Success also is related to developing the talents of staff and being flexible in the face of market changes. Compromise is also essential as is the need to be opportunistic, to add value to the services provided, to leverage funds effectively, to use capitation effectively, and to develop a good business plan.
Work Group Five: Age-Appropriate Health Services
Timothy Kowalski, D.O., Moderator
Dr. Kowalski highlighted the transition points all individuals encounter as they advance through the developmental stages of life. The work group was asked to focus on the transition points and how they may interact with the special needs of individuals with MR.
Marsha M. Seltzer, Ph.D., Scientific Presentation
Dr. Seltzer noted that the health of approximately one-third of individuals with MR is reported to be fair or poor. About 60 percent of people with MR and developmental disabilities live with their families, who often serve as their brokers for health services; however, as children and adults with MR live longer, the role of their parents and siblings in brokering health care services changes.
To plan for care, it is important to merge the life course perspective with the special needs of individuals with specific diagnoses related to MR. For instance, individuals with Down syndrome often experience the early onset of aging. Similarly, individuals with MR versus those with developmental disabilities must be treated differently because they have such heterogeneous needs. At the same time, each stage of life, such as adolescence, early adulthood, and advanced age, offers unique challenges that must be considered in relation to factors such as gender, poverty, barriers to health services, and lack of trained providers.
Paul Glassman, D.D.S., M.A., M.B.A., Creative Program Presentation
Dr. Glassman discussed the Center for Oral Health for People with Special Needs at the University of the Pacific (UOP) School of Dentistry. Historically, as individuals with MR moved from institutions to community settings, their untreated dental problems worsened in response to the lack of community resources. This situation had significant implications for the well-being of this population; research shows that oral health strongly correlates with systemic disease as well as nutrition.
Established to create the “ideal” community-based system for dental care, the Center is a coalition of dental professionals, faculty from the UOP School of Dentistry, regional centers, hospitals, agencies, and individuals, linked by a dental services coordinator. The coordinator, who is usually a dental hygienist, serves as a liaison between the individual and people in the community, often working with general dentists to help them become more comfortable treating individuals with MR. In addition, the Center has a triage and referral system and training programs for all personnel levels. Prevention programs and treatment resources also have been developed. Among others, these include educational materials for dental hygienists, an online resource directory, and a hands-on training program for dentists.
The increased awareness of the importance of oral health and the new coalitions that have been formed highlight the Center’s success. For example, a statewide task force on oral health for people with special needs was formed, in addition to a new effort, the California Endowment for Oral Health Care Program. Going beyond local and State impact, a national forum, Special Care Dentistry, has been established to bring together dental professionals for training, advocacy, and coalition-building to work on common problems.
Work Group Six: Continuity of Health Services Throughout Life
George Jesien, Ph.D., Moderator
Dr. Jesien noted that as individuals move from one health care system to another throughout life, continuity of care is often disrupted. Each system tends to operate under different rules and various eligibility requirements that hinder efforts to obtain needed care. Starting with children, school and the health care systems fail to communicate well with each other, and many services are dropped for various reasons as the child becomes an adult. The goal is to provide systems of care that are easier to navigate, with agencies and key stakeholders coordinating services more efficiently.
Marsha M. Seltzer, Ph.D., Scientific Presentation
Dr. Seltzer suggested that participants consider an interesting paradox—that as communities develop more “age-specialized health care services for individuals with MR,” the specialized care may “become a barrier to continuity of services across the life course.”
The barriers start with health care specialists. If individuals with MR must seek the care of numerous specialists to meet a broad range of health needs, this situation automatically increases discontinuities in care. The specialty needs may change as a patient gets older (e.g., geriatrics) and may require specialty care based on gender (e.g., women’s health services). In this situation, family practice physicians, or having a particular point of service, may play a special role in the care of people with MR.
Fragmentation of the service system also poses barriers to receiving continuous care. Most often, this fragmentation occurs as individuals move from early interventions into public education and then into adult services. Changes in policies and services also pose unexpected barriers. For example, changing the definition of MR and the terminology used can easily affect eligibility requirements. In addition, significant State-to-State variability exists in the availability of services.
Finally, another barrier often arises depending on whether individuals with MR choose to live in family situations. Nearly 60 percent of individuals with MR live with their parents throughout their life course, but disruptions in care can occur when parents die. By contrast, individuals living in nonfamily licensed settings have greater access to health care. This situation occurs because many settings are affiliated with larger efforts to provide at least minimal access to care.
Joel Levy, D.S.W., Creative Program Presentation
Dr. Levy discussed the Young Adult Institute (YAI) Premier Health Care Program, which provides comprehensive health care to individuals with MR and developmental disabilities. Specially trained medical professionals provide both acute and chronic medical, dental, psychiatric, and in-home nursing care services to children and adults. With more than 50 percent of clients being minorities, cultural competency is essential to the program’s success.
Other Program goals include providing continuous care and offering a wide range of services. The Program’s philosophy is that treatments should be integrated, provided in the least restrictive manner possible, and based on the individual and family’s unique needs. To achieve this goal, the Program coordinates its services with those offered by local agencies. This coordination allows individuals with MR to receive care in their communities. At the same time, the Program has contracts with academic hospitals around the State to provide any services that are unavailable locally.
Work Group Seven: Promoting Health: Providers
Sanford Fenton, D.D.S, M.D.S., Moderator
Dr. Fenton introduced several issues raised at the Surgeon General’s Listening Session. These issues included providers not screening individuals with MR for dietary and nutritional status, tobacco or alcohol use, cancer, or domestic violence. Participants in the Listening Session also mentioned that some health care providers have little or no specialized training or equipment needed to care for individuals with MR. Specialized providers also may miss opportunities to ensure that needed immunizations are obtained and to educate clients and their families concerning a range of primary care and prevention topics. These problems are exacerbated by the high turnover rate of personal care attendants and by frequent gaps in the medical record.
On the basis of these trends, recommendations could be devised to help improve preventive screening, provider training, provider coordination, the rate of turnover in personal care attendants, and the use of health promotion techniques.
David Braddock, Ph.D., Scientific Presentation
Dr. Braddock discussed the history of institutionalization of people with MR. Today, States vary in the range of services they offer to individuals, particularly to those in community-based settings. Any effort to develop new health promotion programs must be tailored to this reality. Although the number of small residential homes serving six or fewer clients has increased, health promotion in these settings poses problems. A British study comparing health promotion for individuals with MR in community versus residential settings found inadequacies particularly in community settings. This situation must be corrected, given the importance of health promotion and the number of individuals with MR living in a community setting. Activities could include developing recreation and fitness programs in the community, providing counseling for individuals in the community, working with mental health centers to address the behavioral and mental health needs, collaborating with special education programs to teach children healthy habits, training health professionals about health promotion, training and supporting staff members in residential settings, collaborating with provider and parent organizations to make health promotion a national priority, and working with new technology to promote health.
Jill Morrow, M.D., Creative Program Presentation
Dr. Morrow discussed the Pennsylvania Health Care Quality Units (HCQU) Program and the specific health care issues affecting people with MR in the State. Most notably, health care professionals and others working with this population lack indepth knowledge about specific health care needs. Health promotion is also an issue.
The HCQU Program was created to respond to these problems and to help people with MR become better consumers of health care, to expand their choice of health care providers, and to help deliver a higher quality of care to people with MR. The Program targets individuals with MR and their families, providers of MR services, community medical providers, and county staff (including “support coordinators” who served as case managers). The emphasis is on providing support but not direct care services.
The Office of the Medical Director in the State’s Office of Mental Retardation coordinates the Program’s activities. The activities are implemented by a consortium of counties and are staffed by different clinicians and data personnel. To reach its goals, staff members identify gaps in health care services and health care knowledge and then develop professional training and technical assistance programs to address these needs. Staff members also identify systemic problems and work closely with other offices and agencies to address these issues.
The Program has been effective at the individual and community levels. For example, recently Program staff worked with a young diabetic man who was interested in learning more about his diabetes and how to give himself insulin injections. To meet the man’s needs, HCQU staff contacted a local nurse educator and shared specific educational techniques for working with individuals with MR. The local nurse then was able to teach the young man about his diabetes and show him how he could take better care of his own diabetic needs.
Work Group Eight: Health Promotion: Individuals and Caregivers
Jackie Golden, Moderator
Ms. Golden identified key issues raised at the Surgeon General’s Listening Session. Self-advocates reported that people often talk about them and not to them. Similarly, society often tries to “do for them,” instead of teaching them how to do for themselves. In addition, neither caregivers nor individuals are valued for the potential role they can play in health promotion. Adding to this complexity is that direct care staff in group homes are often impoverished and lack heath care themselves. Therefore, enhancing health promotion for individuals with MR requires training and provider support for direct caregivers, families, and children and adults with MR.
David Braddock, Ph.D., Scientific Presentation
Dr. Braddock discussed some of the difficulties associated with promoting health for individuals with MR in community settings. Self-advocacy organizations can play an important role in launching new health promotion projects, working closely with family members who significantly influence the adoption of healthy lifestyles. To encourage such activities, Developmental Disability Councils should be encouraged to use their authority to give grants within the State for health promotion projects.
Gloria Krahn, Ph.D., Creative Program Presentation
Dr. Krahn discussed the Oregon Healthy Lifestyles for Persons with Developmental Disabilities Program. The Program was developed to address the fact that persons with disabilities (1) often experience poorer health status and narrower margins of health, (2) may be more susceptible to illness, (3) have limited access to treatments, and (4) may be excluded from health promotion opportunities.
The Program is currently developing two new intervention efforts. The first project is the Healthy Lifestyles Workshop for adults with developmental disabilities. The two-and-a-half-day workshop uses a peer training model that emphasizes empowerment training. This training includes understanding the importance of assessing one’s own health and establishing personal health goals. The workshop also targets self-determination and motivation and describes wellness as a lifelong journey that encompasses balance across life activities. To ensure continued success, each participant is paired with a mentor who works with the individual for up to six months following the workshop.
In the past, the workshops were presented in six locations across Oregon, and have included 33 participants with cognitive limitations. Feedback on the project shows that followup is very difficult, but participants report increased awareness of healthy lifestyle choices and of self-empowerment.
Another project, called “Health and Wellness for Teens with Disabilities: Getting Sensitized,” targets health care providers who are in training. This newly developed effort is trying to increase awareness of the special problems that teens with disabilities encounter and to improve provider skills in meeting these needs and in supporting the teens’ overall health and wellness. The project consists of three two-hour modules, and includes didactic teaching, video presentations, and hands-on exercises. The modules, which will soon be field-tested, cover general wellness, relationships and sexuality, and mental health and substance use.
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