Kathleen Braden, M.D. 1
Individuals with mental retardation2 experience poorer health, shorter lifespans, and less access to professional health care than people without this condition (Horowitz et al.). Many factors are thought to contribute to these disparities. Physicians and other providers often lack training and experience in treating individuals with mental retardation and are reluctant to assume clinical responsibility for them. Cultural sensitivity may be lacking. Financing for health care services is often inadequate, and scientific knowledge about the efficacy of care for this population is far from complete. Services may be poorer in quality because of societal assumptions that people with mental retardation cannot participate appropriately in their own health care (Surgeon General's Listening Session and Senate Appropriations Committee Report). For years, families, providers, and these individuals have sought, with varying degrees of success, to improve their health and health care.
This report is designed to provide information about service programs that have developed creative strategies to provide health care to people with mental retardation living in their communities. The report is not a comprehensive catalogue of all health care programs that use creative strategies to serve this population. There is no attempt to evaluate individual programs or to assess the merits of one program over another. Instead, the report illustrates a variety of responses to the distinctive challenges of providing primary and specialty medical, dental, psychiatric, and wellness services to children, adolescents, and adults with mental retardation. The programs described vary in scale, geographic location, populations served, services offered, service models, and funding. Some programs are inclusive, offering services to a broader population and making special accommodations for individuals with mental retardation. Other programs specialize in care for this population.
Following a review of the origins of this report and the author's method, individual program descriptions are presented, with contact information for readers wishing to learn more about their activities. The programs are grouped in four major sections that reflect reported disparities in health care for individuals with mental retardation: medical services, mental health services, oral and dental health care services, and health and wellness programs. Within these sections, programs are shown in subcategories that relate to different strategies in program design. This scheme is flexible because certain programs could fit into more than one category.
The National Institute of Child Health and Human Development supported the research and preparation of this report. Certain programs described in the report were presented at the Surgeon General's Conference on Health Disparities and Mental Retardation, December 5–6, 2001, in Washington, DC.
1 Associate Clinical Professor of Pediatrics, Eunice Kennedy Shriver Center for Developmental Disabilities, University of Massachusetts Medical School, Worcester, MA. The programs and strategies summarized in this paper are described in more detail in a forthcoming report by the author. The author would like to thank the many people who helped her understand their programs and strategies for providing health care for people with mental retardation. For the most part, these people are identified as "contacts" in the summary program descriptions. The author particularly thanks Ms. Joan Beasley, formerly with the Robert D. Sovner Behavioral Health Research Center, for her help in understanding the history and scope of the Center's START Program.
2 The author 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. In preparing her report, she has sought to retain the terminology used by the programs she describes. In the title, however, she has adopted the usage of the Surgeon General's effort on health disparities and mental retardation. 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 is used in official information on the other elements of the Surgeon General's effort on health disparities and mental retardation.
This report is part of recent national initiatives to highlight and improve the health and health care of individuals with mental retardation who live in their communities. Until deinstitutionalization began in the 1970s, large numbers of children and adults with mental retardation lived in residential institutions. Although the institutions were identifiable entities responsible for the health of their residents, they were typically underfunded and understaffed.
Deinstitutionalization brought important benefits. These benefits included newly established rights for individuals with disabilities, for example, the right to public education in the least restrictive environment, and for low-income individuals, the right to publicly financed health care coverage. Supported living and other types of programs were created to help individuals living in their communities. Staff-to-resident ratios in group homes typically improved compared with ratios in the older institutional care sites.
With the inclusion of people with mental retardation in local communities, public attitudes have started to change—but slowly. Severe shortages in financial and human resources that characterized institutional care have not been resolved. In addition, when individuals move into community settings, responsibility for their health care often remains diffused. This situation means that individuals, their families, and their caregivers continue to face difficult challenges finding adequate sources of health care, getting to them, and paying for the service.
Many of these challenges were addressed at a March 2001 special hearing of the U.S. Senate Appropriations Subcommittee on Labor, Health and Human Resources. U.S. Senator Ted Stevens (R-AK) convened the hearing to take testimony from self-advocates, researchers, and Federal officials on the health and health care needs of individuals with mental retardation (Senate Appropriations Committee Report). The focus of the hearing was a report prepared by a research team at the Yale University School of Medicine for Special Olympics, Inc. (Horowitz et al.). On the basis of its literature review, the team reported critical deficiencies in physical, mental, vision, and dental health of people with mental retardation. But the team also reported that health data on this population are "scarce," and that public resources for persons with mental retardation have been devoted primarily to their deinstitutionalization, housing, education, and employment.
At the Senate Appropriations Subcommittee hearing, Surgeon General David Satcher called for better health-related surveillance, community-based health systems, targeted research, and other steps to improve the health status of individuals with mental retardation. The Surgeon General subsequently launched a national effort on health disparities and mental retardation, beginning with an invitation to individuals with mental retardation and others concerned with their health to help him plan a national conference the following December.
More than 600 comments and suggestions sent to a special website helped to structure a Surgeon General's national Listening Session on October 10, 2001. Self-advocates, family members, and other participants in the Session spoke to the Surgeon General in person and by live, interactive video from five sites around the country. E-mail messages and written comment cards were also submitted. Participants reported multiple challenges, from dismissive and inexpert health care providers, to shortfalls in services, insurance coverage (Medicaid and private), transportation, coordination among multiple service systems, and a lack of programs promoting healthy lifestyles and disease prevention. Providers described the poor fit between their clinical training and the distinctive needs of patients with mental retardation. Family members said that their ongoing responsibility for children and adults with mental retardation meant that they were often unable to hold paying jobs and to carry health insurance for themselves. Poverty was reported to be high in this population (Surgeon General's Listening Session).
Finally, family and provider advocates for people with mental retardation urged the Surgeon General to promote research into the prevalence of mental retardation and the efficacy of care for this condition. Some individuals said that people with mental retardation were "lost" in larger studies of people with disabilities, and they urged collection of data that could provide the basis for documenting the need for improved funding and better allocation of health care resources to serve this population. Others sought research that could be used to establish evidence-based clinical standards and provide training curricula. Researchers wrote to the Surgeon General noting that their task was complicated by the current use of three different diagnostic criteria for mental retardation.
The issues and concerns described to the Surgeon General formed the agenda for the December conference to develop a national action plan on health disparities and mental retardation. This report was prepared to provide conference attendees with examples of local and State programs that address some of their concerns.
To identify programs using creative strategies to address health disparities in people with mental retardation, the author queried key informants, including self-advocates and families, health care and social service providers, schools of dentistry and medicine, national organizations (medical, social service, and advocacy), and researchers and other experts in the health care needs of people with mental retardation. To collect information about the programs, the author conducted semistructured telephone and e-mail interviews with individuals who had established and who currently administer the programs. Respondents were asked to describe their programs generally and to identify populations served, services provided, and sources of funding. Respondents also were queried about providing training and evaluations or research associated with a program. Finally, respondents were asked to reflect on challenges encountered in creating and maintaining their programs, and to provide advice to others who may consider replicating their strategies.
Several factors determined the selection of programs included in the report. The first factor was whether one or more key informants viewed a program as a thoughtful response to one or more health care gaps that commonly affect individuals with mental retardation. A second factor was the willingness of administrators to have their programs included in the report and to provide the author with requested information. A third factor was selection of programs that illustrate many different types of service models and strategies, populations served (urban, rural, ethnic, and cultural and racial minorities), financing mechanisms, geographic distribution, and other characteristics.
The following descriptions are based on information provided by program administrators.
Citywide program providing primary and subspecialty care and dental and mental health services to culturally and socially diverse population of individuals with developmental disabilities, including mental retardation. Provides case management and family care services; maintains outreach to schools, residences, day programs, and homes.
Contact:Joel M. Levy, D.S.W.Chief Executive OfficerYoung Adult Institute Network460 West 34th StreetNew York, NY firstname.lastname@example.org
Statewide health care company providing primary and mental health care, interdisciplinary assessments, health promotion and disease prevention, and other services for two groups of Medicaid managed care enrollees: children and adults who qualify for services of the State Division of Developmental Disabilities (DDD), and individuals who qualify for Medicaid and Medicare. DDD arranges needed consultations with local "safety-net" providers. Providers are trained in the company's service model. A five-year planning process including all stakeholders preceded establishment of the company.
Funding: Medicaid, under DDHA contracts with Medicaid managed care plans.
Contact:Theodore Kastner, M.D., M.S., PresidentDevelopmental Disabilities Health Alliance1285 Broad StreetBloomfield, NJ email@example.com
Regional Center of Excellence providing specialized medical, behavioral, dental, and respite services for individuals with mental retardation and complex medical and behavioral needs. Program evolved from residential training center and includes inpatient services. Provides training for staff of community residential services and vocational providers, also to university students in health and other professions. Evaluates consumer satisfaction.
Funding: Primarily State and Federal funds for Intermediate Care Facilities for Mental Retardation (ICF/MR). Additional revenue sources, primarily Medicaid and private insurance, are being explored. Steering committee includes facility and community stakeholders. State is expanding service model to other State training centers and to geriopsychiatric centers.
Contact:Mark Diorio, Ph.D., M.P.H.Facility DirectorNorthern Virginia Training Center9901 Braddock RoadFairfax, VA firstname.lastname@example.org
________________________________* Denotes programs presented at the Surgeon General's Conference on Health Disparities and Mental Retardation, December 5–6, 2001, Washington, DC.
A program based in a primary care physician's office, for children with developmental disabilities and their families. A steering committee composed of the physician, head nurse, and three families of the children designed special office procedures based on a survey of the parents. Procedures include a script for the receptionist to identify patients with special needs, parking and other special accommodations for office visits, and queries during visits about nonmedical needs. Other elements are a resource parent/care coordinator position and a family network that advocates on medical and educational concerns. Currently exploring expansion to other physicians' offices.
Funding: Initial Robert Wood Johnson Foundation grant; additional grant and Medicaid funding for care coordinator position.
Contact:Kim Daniels645 North Main StreetNorthfield, VT email@example.com
Demonstration project at university research clinic providing prenatal care to multirisk, African American, inner-city clients. Estimated 30 percent of women were mildly to moderately cognitively impaired. Provided prenatal care (medical, nursing, social work, nutrition, education) using evidence-based practices. Clinic nurse-practitioners trained to recognize potential problems in patient comprehension, communication, and understanding. Videotape and other client supports developed; transportation and onsite child care offered. Study results indicated positive effects, including participants' knowledge of risk conditions and perceived mastery in their lives.
Funding: Grant from Federal Agency for Health Care Policy and Research (now the Agency for Healthcare Research and Quality). Research demonstrated that costs could be funded through Medicaid.
Contact:Sharon L. Ramey, Ph.D.Director and ProfessorCivitan International Research Center1719 Sixth Avenue South, Suite 137Birmingham, AL 35294-0021205-975-0299, fax firstname.lastname@example.org
Regional outreach clinic serving children with mental retardation and developmental disabilities in Appalachian counties in southeastern Ohio. Provides onsite, multidisciplinary evaluations for infants and children up to age six with developmental delays and for school-age children with developmental disabilities and mental health/behavioral disorders. Assessment teams are clinic staff and the local public health nurse; teams also may include local school personnel, primary care and mental health providers, and county juvenile justice systems. Program also provides referrals, coordination by a local public health nurse, and health professions training in clinics. Program is evolving from one that provides direct services to one that trains local program personnel to evaluate and care for the children.
Funding: Primary funder is State Department of Health (Title V agency); other support includes Healthy Tomorrows and Leadership Education in Neurodevelopmental Disabilities (LEND) grants (Federal Maternal and Child Health Bureau, Health Resources and Services Administration), also private foundations and financial and in-kind support from participating agencies and local programs, such as early intervention, county health departments, schools, Head Start, county mental retardation/developmental disability boards, and physicians.
Contact:Ronald L. Lindsay, M.D., FAAPMedical Director, Nisonger Center UCEThe Ohio State University1581 Dodd DriveColumbus, OH email@example.com
Interagency program providing developmental screening at reservation WIC clinics for infants and children up to age five; also screening followup, referral for evaluations at reservation clinic for children, and linkages to services for families of children with health and/or developmental concerns. Trains local providers and university graduate students. "Uses best available practices."
Funding: Three-year startup funding from the Federal Bureau of Indian Affairs and State Office of Special Education; currently supported by the tribe.
Contact:Judy StruckExecutive DirectorCenter for Disabilities, Department of PediatricsUniversity of South Dakota School of Medicine1400 West 22nd StreetSioux Falls, SD 57105605-357-1439 or firstname.lastname@example.org
Mobile team providing multidisciplinary evaluations to children of clients at a methadone maintenance clinic. Transportation to and medication at the evaluation site were offered to clients of other methadone clinics. Team services on site included family counseling, short-term speech therapy, nutritional counseling, and behavior management training; referrals provided for educational, therapeutic, and medical services. Training in child development, for substance abuse clinic staff, provided.
Funding: Medicaid; but reimbursement is limited to one clinician visit per client per day; limited ability of program to finance multiple clinician services needed to complete evaluations during a client's visit.
Contact:Lisa Shulman, M.D.Rose F. Kennedy Children's Evaluation and Rehabilitation CenterAlbert Einstein School of MedicineYeshiva University1165 Morris Park Avenue, Second FloorBronx, NY email@example.com
Statewide program that trains health care professionals in care of deinstitutionalized individuals and trains direct care staff and case managers to provide medical support for clients. Program also includes specialty consultation clinics; specialized clinics at several primary care clinics; consultations for physicians, nurses, caregivers, case managers, interdisciplinary teams, and families; and consultations on policy for State agencies. Mediation provided for team or agency conflicts affecting delivery of services. Program maintains a website (http://coc.unm.edu/).
Funding: State Department of Health, also some Medicaid and Federal Maternal and Child Health Bureau funds.
Contact:Jennifer Thorne-LehmanSenior Program ManagerUniversity Center for Development and DisabilityUniversity of New Mexico2300 Menaul Boulevard, NEAlbuquerque, NM firstname.lastname@example.org
Data collection, training, and technical assistance organizations working with health care and residential services providers in multicounty areas. HCQUs housed in parent organizations, such as nursing schools and mental health services, but administered independently. No direct services; program focus is on improving communication between residential care and medical systems and on increasing capacity of both systems. Future goals include collecting and analyzing data related to management of health care incidents to aid counties providing services, and expanding data collection to include individuals living outside a residential system to assess their quality of care.
Funding: Medicaid (Medicaid waiver administrative funds and funds for individuals other than those eligible for waiver funding).
Contact:Jill Morrow-Gorton, M.D.Medical DirectorOffice of Mental RetardationCommonwealth of PennsylvaniaHealth and Welfare Building, Room 423Harrisburg, PA email@example.com
Funding: State Funding for first eight years of clinic; current funding from third-party payers.
Contact:Nancy N. Cain, M.D.Director, Psychiatric ServiceUniversity of Rochester School of Medicine and DentistryStrong Center for Developmental Disabilities202 Roosevelt RoadRochester, NY firstname.lastname@example.org
University-based program providing psychiatric outpatient care for older adolescents and adults with developmental disabilities and mental health needs, living in State and in parts of Iowa. Program also trains psychiatry residents. Services include testing and evaluations, psychotherapy, behavioral interventions, medication management, and consultations. Clients are primarily from rural communities.
Funding: University Department of Psychiatry in College of Medicine and third-party payers.
Contact:Mark H. Fleisher, M.D.Director, Neuro-Developmental PsychiatryUniversity of Nebraska College of Medicine985578 Nebraska Medical CenterOmaha, NE email@example.com
The Systemic, Therapeutic, Assessment, Respite and Treatment (START) program for individuals with developmental disabilities and behavioral/mental health care needs (dually diagnosed) in region, links developmental disabilities agencies and mental health providers serving the general population. Program also provides crisis intervention services, and specialized outpatient psychiatric services for dually diagnosed individuals. Services include a mobile emergency crisis team, emergency meetings involving inpatient units or an emergency respite facility, emergency and "planned" respite services, and short-term psychiatric inpatient care (community mental health and general hospitals). Program focus is planning and coordination by mental health crisis and developmental disabilities service teams, working with individuals, families, and caregivers. Specialty interventions provided as needed.
Funding: State Department of Mental Retardation; also insurance.
Contact:Debra Phelps, M.S.DirectorThe Robert D. Sovner Behavioral Health Resource Center99 Rosewood Drive, Suite 240Danvers, MA 02467978-750-6828, firstname.lastname@example.org
based crisis intervention program aids communication and cooperation between community providers serving individuals with mental retardation and challenging behaviors. Services include establishing formal and informal communications and agreements among various providers, educating families and agency staff (e.g., psychiatric emergency room social worker and psychiatric residents), conducting skilled behavior assessments, and employing management techniques.
Funding: State Office of Mental Retardation and Developmental Disabilities.
Contact:Nancy N. Cain, M.D.Director, Psychiatric ServiceUniversity of Rochester School of Medicine and DentistryStrong Center for Developmental Disabilities202 Roosevelt RoadRochester, NY email@example.com
Clinical service and training clinic at the University of Washington dental school, providing care for adults with special health care needs resulting from developmental, physical, medical, and emotionally disabling conditions. Services include diagnostic assessments, preventive care, primary dental care, emergency services, and rehabilitation for individuals with complex oral problems. Services provided in clinic and at affiliated clinics in a residential school, at other sites, and in individual residences for those who are homebound. Emphasis is on use of patient management techniques and avoiding use of sedation whenever possible. Clinic trains dental school students in care of individuals with special needs. Patient surveys indicate a high degree of satisfaction with quality of care.
Funding: Startup funding from the Robert Wood Johnson Foundation; currently supported by dental school Department of Oral Medicine with additional support from State Department of Health and Social Services, which pays a special rate to cover specific dental services and costs from increased treatment time.
Contact:Glenn M. Govin, D.D.S., M.P.H.DECODDepartment of Oral MedicineSchool of DentistryUniversity of WashingtonD-215 Health Sciences Center, Box 356370Seattle, WA206firstname.lastname@example.org
Countywide program coordinating care, through case management, for adults participating in the State mental retardation/developmental disabilities system. Program developed network of providers, hospitals, case managers, caregivers, and guardian agencies. Dental hygienist serves as care coordinator; provides comprehensive assessments of individuals' oral health and extent of disability, obtains medical and dental histories, and accompanies clients to participating dentists' offices. Dentists are offered professional education credits in care of this population. Program also arranges transportation to dental appointments and counsels caregivers and providers on potential sources of payment for services. Consumers are visited periodically to ensure that the health promotion plan is understood and followed.
Funding: Support from the Health Foundation of Greater Cincinnati and county Board of Mental Retardation and Developmental Disabilities. Some startup funds came from ARC.
Contact:Diane Vasiliadis, R.D.H.Program CoordinatorButler County Dental Care Program2100 Pleasant AvenueHamilton, Ohio email@example.com
County-based program providing a dental coordinator for individuals with developmental disabilities in local social service agencies in rural communities. Services include community assessments of existing oral health resources, triage and referrals by a coordinator, prevention training and materials for caregivers and parent groups, recruitment of dentists and provision of in-office social supports, continuing education courses for oral health professionals, hands-on training, and educational materials. Program established a statewide task force that developed a State action plan and continues to have input on legislation. Program working with State Department of Developmental Services to integrate oral health training into health and other professional education programs.
Funding: Initial grant funding; social service agencies now fund a dental coordinator. Program expected to be replicated in eight communities with foundation support.
Contact:Paul Glassman, D.D.S., M.A., M.B.A.Professor of Dental PracticeAssociate Dean for Information and Educational TechnologyDirector, Advanced General Dentistry ResidencyUniversity of the Pacific School of Dentistry2155 Webster StreetSan Francisco, CA firstname.lastname@example.org
Program at an intermediate care facility providing dental care to individuals with severe to profound mental retardation residing at the facility and to clients from three outlying community homes. Services include general dentistry, periodontal and oral surgery, endodontics, biopsy, and emergency dental care. Conducts research on improving quality of care (protocols reviewed by University of Louisville Institutional Review Board). Reports very low rate of referrals to inpatient operating room for treatment under general anesthesia. Program developed procedures for low-dose digital radiography and reduction of gingival hyperplasia with maintenance of seizure control.
Funding: State mental retardation/developmental disability agency; expected new State funding will permit treatment of individuals with mental retardation living in group homes or with their families.
Contact:Henry Hood, D.M.D.Director, Dental Services ClinicHazelwood Center ICF/MR1800 Bluegrass AvenueLouisville, KY email@example.com
Statewide, university-based program providing comprehensive oral health care for individuals with developmental disabilities. Multipart program includes a Special Needs Community Dental Health Program, which is a partnership of individuals with developmental disabilities, special education personnel, parents, social workers, and service coordinators. Provides oral health evaluations and referrals for treatment by dental hygienists, also case management and oral health education in classrooms, adult day activity centers, sheltered workshops, and community residences. Other program components include dental clinics at developmental disability centers and elsewhere, and postgraduate training for general dentists concerning care for individuals with developmental disabilities and for other special populations.
Funding: State departments of health and mental retardation and revenues from third-party payers. Dental clinic clients funded through the State's managed care plan for low-income residents. Additional funds are needed to continue the program.
Contact:John Morgan, D.D.S.Assistant ProfessorTufts University School of DentistryDentist in Chief and Administrative Director, TDF Program200 Trapelo RoadWaltham, MA firstname.lastname@example.org
Program provides workshops in health promotion, with peer trainers, for individuals with developmental disabilities. Curriculum reflects needs identified in six geographic and culturally diverse focus groups of individuals with developmental disabilities and discussions with care providers. It also teaches principles of self-determination, development of individual support systems, and healthy lifestyles. Programs include recruitment of mentors from participants' communities and collection of followup data to monitor and determine the impact of training.
Funding: Federal Administration on Developmental Disabilities grant (Project of National Significance) and partnership with State Office on Disability and Health.
Contact:Gloria Krahn, Ph.D.Oregon Institute on Disability & DevelopmentOregon Health & Science UniversityP.O. Box 574Portland, OR email@example.com
Program trains students who will become care providers for children and adolescents with neurodevelopmental and related disabilities. The center has developed a pilot-tested professional training curriculum in health promotion and wellness for adolescents with neurodevelopmental and related disabilities. Curriculum developed for use by master's level and predoctoral students and by individuals in medical fellowship programs who will provide care to children and adolescents with neurodevelopmental and related disabilities. Curriculum is adapted from materials for persons without developmental disabilities and reflects data from focus groups of adolescents with developmental disabilities, consultations with adolescents with physical and learning limitations, consultations with other LEND programs, and the literature. Curriculum modules address general concepts of wellness and disability, sexuality and mental health, and substance abuse. Data collected to monitor and to determine impact of training; field-testing planned at three other LEND programs, with further data collection to assess overall program impact.
Funding: Federal Administration on Developmental Disabilities grant (Project of National Significance); National Institute on Disability and Rehabilitation Research, Maternal and Child Health Bureau (LEND), and partnership with State Office on Disability and Health.
Contact:Carla CulleyCenter CoordinatorRRTC on Health and WellnessP.O. Box 574Portland, OR firstname.lastname@example.org
"Archived Videocast of the Surgeon General's Listening Session on Health Disparities and Mental Retardation," October 10, 2001. Link to website: http://videocast.nih.gov/PastEvents.asp?c=4&s=11
Horowitz S, Kerker B, Owens P, and Zigler E. "The Health Status and Needs of Individuals with Mental Retardation." New Haven: Yale University School of Medicine. Published by Special Olympics, Inc., March 2001. Link to website: http://www.specialolympics.org/Special+Olympics+Public+Website/English/Initiatives/Health_Research/Research/default.htm
107th Congress, United States Senate Committee on Appropriations, Report on Special Hearing, March 5, 2001, S. Hearing Report No. 107-92. (Includes a reprint of paper by Horowitz et al.) Link to website: http://www.specialolympics.org/Special+Olympics+Public+Website/English/Initiatives/Health_Research/Research/default.htm
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