October 10, 2001
National Institutes of Health
Bethesda, MD
Civitan International Research Center, University of Alabama
Birmingham, AL
Eunice Kennedy Shriver Center, University of Massachusetts Medical School
Worcester, MA
Oregon Institute on Disability & Development, Oregon Health & Science University
Portland, OR
Waisman Center, University of Wisconsin
Madison, WI
INTRODUCTION
On October 10, 2001, Surgeon General David Satcher, M.D., Ph.D., held the first-ever Surgeon General's Listening Session on Health Disparities and Mental Retardation. The Listening Session was a major component of the Surgeon General's effort on health disparities and mental retardation, a national dialogue to better understand and address the many severe and often unmet health needs of people with mental retardation. The keystone of the effort is reaching out to individuals with mental retardation,* their families and providers, advocacy groups, and community-based organizations that are on the front lines daily, trying to protect and promote the health and well-being of people with mental retardation.
This summary provides an overview of comments to the Surgeon General during the Listening Session. It also reflects written comment cards collected during the Session and e-mail messages to a special Surgeon General's website received before, during, and one week following the Listening Session. The purpose of the Listening Session was to learn directly of health-related concerns and experiences of individuals with mental retardation and others concerned with their health. Participants were invited to share their thoughts regarding the unmet health needs of people with mental retardation, and to suggest possible solutions.
The major themes that emerged from the Listening Session were used to develop the agenda for the Surgeon General's Conference on Health Disparities and Mental Retardation on December 5–6, 2001. At that Conference, individuals and families will work with leading experts, researchers, and representatives of professional and other health care organizations to develop a national action plan addressing health disparities and mental retardation. This grassroots approach reflected the Surgeon General's commitment to an action plan addressing the issues of most importance to individuals with mental retardation and others concerned with their health. Conference participants will discuss what is currently known concerning the science, practice, and other aspects of health care services for individuals with mental retardation, identify priority issues, and draft recommendations for action.
This summary of the Listening Session reflects comments presented by more than 40 individuals during the Session as well as comments of an additional 800 individuals, including nearly 600 who had sent comments to the Surgeon General's website before the Listening Session. Analysis of the issues described in these comments indicated that they cluster under four themes, which formed the agenda of the Listening Session. The themes were as follows:
Understanding special health care needs. Examples of issues were attitudes of health professionals towards individuals with mental retardation, and provider knowledge and understanding of special health care needs of these individuals.
Getting health care services. Examples of issues were finding and getting to appropriate health care, and paying for needed services.
Growing up and living with disabilities. Examples of issues were age-appropriateness of health care services, and transitions as individuals' health care needs change with their age.
Healthy lifestyles. Examples of issues included roles of health professionals, individuals with mental retardation, and their caregivers in maintaining health and preventing illness and secondary disability.
During the three-hour Listening Session, speakers at five sites described their concerns and ideas for improvement to Dr. Satcher, Dr. Duane Alexander, Director of the National Institute of Child Health and Human Development, other participants at the sites, and a national audience viewing a live videocast of the Session. The archived videocast can be viewed at http://videocast.nih.gov/PastEvents.asp?c=4&s=11. Representatives of 29 different Federal agencies and more than 70 nongovernment organizations participated in the planning and implementation of the Listening Session.
The summary begins with a discussion of several themes that recurred throughout the Session in many different comments, both verbal and written. The many specific issues described for the Surgeon General are summarized in bulleted lists under eight topical headings (two for each of the four Listening Session themes). To convey the tone of the Listening Session, selected remarks of participants are shown in italics.
* In this summary, "individual" refers to an individual with mental retardation. The Surgeon General is aware that there is a controversy around the use of the term "mental retardation" and that self-advocacy groups and professional associations are currently discussing alternatives. Until a consensus is reached, with the goal of drawing attention to the great health disparities faced by people with what has been traditionally known as "mental retardation," that term will be used in official information on the Conference and other elements of the Surgeon
COMMON THEMES
Throughout the Listening Session and in written comments, providers, caregivers, and especially self-advocates spoke of their determination to be treated by health care providers as "real people," with the same interest in good health and functioning as people without mental retardation. As one self-advocate told the Listening Session:
"I am who I am, and I can be the best of who I am. All I'm trying to do is make a living, and the only way I can do that is to have good health care."
At the same time, speakers described distinctive characteristics that indicated the need for specialized approaches to health care. One health care provider wrote:
"…Disability impacts the way people experience medical, social, and psychological problems. Learning ability and health may be affected by medication, complicated by challenging behaviors, or impacted by anxiety or fear…."
A second common theme was the individualized nature of the health care needs of individuals with mental retardation. The types and intensity of services an individual may need vary with the individual's age, the coexisting conditions, the etiology of his or her mental retardation, and the environment in which the individual lives. Some participants spoke primarily of the same types of preventive, acute, and chronic health care needs that people without mental retardation experience. Others reported the challenges of managing exceptionally complex coexisting conditions. One family member, describing a child with Down syndrome, said:
"…The medical issues are more paramount. [The child] has had open heart surgery, two pacemakers, asthma, [tracheomalacia], four sets of ear tubes, four eye surgeries,…RSV [respiratory syncytial virus], Candida albicans infection, reflux, Sjogren's syndrome, JRA [juvenile rheumatoid arthritis], scoliosis, 47 pneumonias, upper right lobe lung damage (resulted in 14 months of supplemental [oxygen]), dental health issues, strabismus, and nystagmus."
A third common theme was the need for more information—both science-based knowledge that could improve the health of individuals with mental retardation, the quality of their care, and their access to services, and also specific information on how to understand a family member's condition and how to find and pay for health care. In particular, difficulties in recognizing and treating behavior disorders, depression, and other mental illness were often described. Family members wanted to understand what behavior in a child is developmentally appropriate and what may be a behavior disorder that would benefit from early diagnosis and treatment. A health care professional wrote:
"Many academic physicians/dentists are bewildered by the health problems of mentally retarded people [sic] with severe complex disabilities and will acknowledge that clinical research-based medical data necessary for optimal treatment of frequently occurring medical/dental conditions in this population is lacking…."
A family member said she felt both overwhelmed by information available on the Internet, yet underinformed about day-to-day issues in the health of a family member with mental retardation. Another told the Listening Session:
"No one seemed to be able to help us find what we wanted or needed."
Finally, certain participants described personal strategies that they considered helpful, as well as existing services and programs that seemed successful. One-self advocate said:
"People advocated for me and helped me learn advocacy skills so that I could personally help medical professionals know my needs."
Among existing programs that individuals described as helpful were health promotion activities that focused on obesity in a special education setting; a Medicaid-financed waiver program that trained minority personal assistance staff to work with adolescents with disabilities; medical curricula that included parents of individuals with disabilities as teachers of medical students; and a one-stop diagnostic, treatment, and resource center for families.
Some participants also suggested changes that could reduce health disparities experienced by individuals with mental retardation. For example, they urged priority attention to research and care for individuals with mental retardation and mental illness (dual diagnosis). Collaborations between academic medical and dental centers and physicians and other providers with experience in institutional care of people with mental retardation were suggested as a means of improving both care and the quality and use of research.
Other suggestions included development of standards of clinical practice and standards for evaluation of services for individuals with mental retardation; professionalization of personal care attendants; changes in the organization and financing of health care; and addressing public misperceptions of mental retardation. One of the most common suggestions was revisions in curricula of health professions schools and training programs. One family member said:
"As [my daughter] gets older, [the] doctor's appointment becomes even more challenging. Since she is nonverbal and not able to express herself in meaningful ways, finding out what has been bothering her has been the job of my instinct….I really think the medical schools should somehow incorporate curriculum on dealing with or treating persons with disabilities, particularly with mental retardation, into their existing course of study. Being a member of an immigrant community, I think there has to be more diverse medical personnel to effectively treat patients whose English proficiency is limited…."
Many participants summed up their concerns as lack of access to the type of care they needed, when they needed it. In grouping examples of these concerns under the topical headings below, an effort was made to highlight underlying factors that could be addressed in a national action plan.
SUMMARY EXAMPLES OF LISTENING SESSION TOPICS
Understanding Special Health Care Needs
Attitudes of Health Care Professionals
"Whenever I go into the doctor's office,…they talk to the people that bring me. But it's my life and it's my illness.… Can you respect me enough to talk to me?" (Self-advocate)
"Doctors need to be educated by families…." (Health care educator)
- A physician or other health care provider may be reluctant to accept an individual as a patient.
- A provider may not accept Medicaid recipients as patients.
- A provider may provide or recommend a lower level of care for an individual with mental retardation than would be recommended for a person without this condition.
- A provider may not interact directly with the individual with mental retardation but may instead talk only with a family member or other person with the individual.
A provider may not respond to or understand values and perceptions of health and mental retardation of African Americans, Native Americans, Alaska Natives, Hispanics, Southeast Asians, and other distinctive ethnic and cultural groups; a provider may not speak the primary language of an individual with mental retardation and his or her family.
The Quality of Health Services
"… [Individuals with these disabilities] may need increased time, different treatment methods, and more frequent learning opportunities…." (Health care professional)
"Where is research currently conducted and/or compiled that addresses (a) epidemiology of health statistics of persons with MR, (b) access to health care, (c) effectiveness of training programs for providers, families, and self-advocates, and (d) impact of Federal and State funding policies in health care access and health statutes?" (Listening Session comment card)
- Multiple gaps in the scientific knowledge base impede improvements in the health care of individuals with mental retardation. Data collection and analyses typically fail to specifically identify individuals with mental retardation.
- More translation of the existing science base into forms usable by individuals, caregivers, and health care providers is needed.
- Clinical practice guidelines and methods of measuring quality of care for individuals with mental retardation are needed. The experience of individuals with mental retardation in using a health care service should be considered when that service is being evaluated.
- Health providers often lack specialized knowledge and training in treating individuals with mental retardation.
- Health care providers may not be knowledgeable about specific clinical issues, such as diagnosis and treatment of mental illness and recognition of abuse and neglect.
- A provider may use medication inappropriately to control challenging behaviors, instead of using therapies to assist the individual and caregiver with managing such behaviors.
- Health care providers may be more likely to extract teeth than to provide ongoing preventive oral health care for individuals with mental retardation.
- An individual's medical history, diagnosis, and treatment may be substandard because the provider does not communicate effectively with the individual. For instance, diagnostic and treatment procedures that are inadequately explained may be refused. A provider may be reluctant to accept clinical responsibility when an individual refuses recommended procedures.
Getting Health Care Services
Finding and Getting To Health Care Services
"We drive 200 miles to get specialized health care because doctors here have no understanding of [our daughter's] needs, mostly because she has Down syndrome, besides other conditions many 'normal' people get." (Family member)
- Individuals, families, and providers lack information about the types, locations, and availability of health care services.
- There are shortages of appropriately trained and experienced providers at all points of contact in the health care system: primary care and specialist physicians, including psychiatrists, dentists, nurses, psychologists, ancillary health care professionals such as radiograph technicians, emergency department providers, and administrative staff of health care providers and services. Shortages are particularly acute in rural and low-income urban areas.
- Clinical sites may not be physically accessible, such as not being accessible for individuals with visual and/or hearing impairments.
- Professional equipment, from scales to dental chairs to diagnostic and treatment equipment, may not be appropriate for individuals with disabling conditions, including mental retardation.
- Shortages of appropriate health care services exist across community settings, including in homes of individuals, in schools, and in supported living arrangements.
- Mental health programs lack models of care that are appropriate for individuals with mental retardation.
- A provider may not be knowledgeable about working cooperatively with families, special education programs, community living arrangements, or other systems providing health and other types of care for an individual. This lack of knowledge concerning existing, appropriate health and related services makes these resources less accessible to individuals who require them.
Paying for Health Services
"…I needed to navigate a very complex medical assistance system and even find loopholes so that my dentures would be replaced sooner than the allocated time for replacement due to early breakage (from seizures)." (Self-advocate)
- Needed services may be excluded from insurance coverage (Medicaid or private, including managed care). For example, Medicaid typically does not cover routine adult dental, vision, or hearing services or preventive care. Private insurers typically exclude long-term therapies, developmental assessments, nutritional products, and customized durable medical equipment.
- Mental retardation may be characterized as a mental illness, excluded from medical coverage, or as a neurologic condition, excluded from psychiatric coverage.
- An insurer may refuse to provide coverage for an individual with mental retardation.
- Insurance premiums may be exceptionally costly; out-of-pocket costs of services not covered by an insurer may be unaffordable for middle-class families.
- An insurer (including Medicaid) and school system may each refuse coverage for occupational, speech-language, or physical therapies, and other services provided in the educational setting. Each may consider the other program to be financially responsible.
- Service authorization procedures (Medicaid, managed care, and special education plans) are too complicated, too time-consuming, and too delayed. Services may be inappropriately denied as not "medically necessary."
- Insurance personnel responsible for authorizations may not understand mental retardation or other conditions associated with mental retardation.
- Routine administrative practices may be inappropriate for an individual with mental retardation. For example, the individual may not understand a mail notice to choose a primary care physician, and may be automatically assigned to a physician who does not understand the individual's needs.
- Routine administrative practices may be inappropriate for an individual with mental retardation. For example, the individual may not understand a mail notice to choose a primary care physician, and may be automatically assigned to a physician who does not understand the individual's needs.
Growing Up and Living with Disabilities
Age-Appropriate Health Services
"Just because people get older doesn't mean their disabilities disappear…." (Self-advocate)
"Many [persons] with cognitive limitations become parents and fall through the cracks [as they focus on getting health care for their own child]….There is a need for specific programs…with a commitment to help these families…." (Health care professional)
- Pediatricians and pediatric dentists have historically continued to provide care for individuals after childhood; however, improved lifespans mean that these individuals need practitioners knowledgeable in primary adult care, in specialist care for conditions found in other adult populations, such as obesity and cardiovascular conditions, and in conditions occurring at elevated rates in certain individuals with mental retardation (e.g., dementia associated with premature aging).
- Age-related conditions, such as changes in medication needs, mobility, or arthritis, may be seen as part of an individual's disability and may be inadequately recognized or treated.
- Existing service models for end-of-life conditions, such as hospice or institutional care for Alzheimer's disease, may not be appropriate or acceptable for an individual and his or her family.
Continuity of Health Services Throughout Life
"…It is so hard to have your head in the trenches…day to day…and still be able to look ahead and find possibilities for the future…." (Family member)
- The extent of Medicaid coverage may depend on age, not medical need, of an individual. For example, coverage for home care may end at age 21 for a ventilator-dependent individual.
- Coordination among medical specialists and with early intervention services for care of a medically complex person may work during the first years of life; however, when the medical condition is stabilized and the person's needs become more intensive and diverse as he or she grows, finding and coordinating multiple services may be left to the family.
- Transition from adolescent to adult care is especially complex.
- Care for an individual with multiple conditions may be fragmented. For example, different specialists may be managing an individual's seizures, gastrointestinal disorder, and abnormal destructive behaviors, resulting in adverse drug interactions or chronic drug toxicity. Age-related changes in health care needs may further complicate care if more or different providers are needed.
- There are severe shortages in care coordination services.
Healthy Lifestyles
Promoting Health: Providers
"To prevent injuries, we need the same precautions as for the elderly who are less coordinated, less stable, less able to hear and see well, and less able to make quick decisions; health conditions [associated with employment] are not monitored, and it is hard for the individual to associate it to their job site or activity…." (Health care professional)
"Current [substance abuse] intervention and treatment programs are completely unsuitable for [individuals with mental retardation] since they often require communication and discussion. However, opportunities for abusing substances are abundant. They become a form of release and self-medication when there are no more suitable outlets…." (Health care professional)
- Providers may not screen individuals with mental retardation for dietary and nutritional status, exercise habits, oral disease (e.g., periodontal disease), tobacco and alcohol use, depression and other mental illness, cancer (mammograms, Pap smears, prostate cancer), abuse or neglect, domestic violence, and occupational hazards.
- Providers may not have the specialized training and equipment needed to provide preventive interventions, such as oral prophylaxis and applications of protective materials to tooth surfaces. Providers may overlook the need for immunizations and opportunities to educate individuals and families in health-promoting behaviors such as exercise.
- High rates of turnover in personal care attendants may mean that an attendant does not know the medical history and concerns of an individual with mental retardation. Thus, the attendant may not be able to help either the individual or the provider in communications, maintaining needed courses of treatment, recognizing symptoms that need attention from a health care professional, and other matters.
- Gaps in, or unavailability of, medical records of an individual with mental retardation may compromise continuity of health care services.
Promoting Health: Individuals and Caregivers
"I would like to see programs for the whole body…." (Self-advocate)
"People with disabilities need help to know about diet…." (Self-advocate)
- Training and education in self-care may not be offered to individuals with mental retardation. Opportunities to provide such training and education in community settings, such as special education programs, may be overlooked.
- Preventive interventions may not be designed to enable an individual to understand or participate in health-promoting behaviors, such as management of diabetes and routine oral hygiene.
- Personal care attendants may not be trained and may not help an individual maintain appropriate diet and nutrition, regular exercise, or good oral hygiene, and avoid tobacco use and other health risks. Attendants may allow or unintentionally encourage unhealthy lifestyles by their own example if they are not knowledgeable about health promotion.
- Job coaches and employment counselors may not be trained to identify and advocate against unsafe workplace conditions, such as exposure to toxic substances, repetitive motion injuries, and others. Occupational hazards may be viewed as a lower priority than securing employment for an individual with mental retardation.
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