The medical and oral health status of persons with intellectual and developmental disabilities (I/DDs) is exceedingly poor and is reflected in high rates of periodontal diseases, dental caries, dental erosive patterns, and related medical conditions, such as cardiovascular disease and orofacial infections, that contribute to morbidity and mortality. This policy statement documents the poor health status of the US I/DD population and its negative impact on quality of life and longevity. To address and more fully understand this problem, the policy statement presents emergent theory that integrates oral, biological, and social factors that determine health outcomes. The statement identifies examples of evidenced-base strategies to improve the oral health of people with I/DDs. These recommended changes to the system of care require interdisciplinary diagnosis, treatment planning, and behavioral strategies that accommodate disabilities. Because oral health is an essential component of overall health and well-being, a specific and urgent public health response is needed. The designation of a medically underserved population does not negate the federally mandated requirement for individual privacy and personal autonomy. This policy statement calls for a systematic implementation of a public health strategy integrating oral health promotion, prevention, and treatment with medical care for persons with I/DDs and recommends that APHA effectively advocate for the implementation of evidence-based interdisciplinary models of care that can significantly improve the health status of this vulnerable population and demonstrate effective outcomes.
Relationship to Existing APHA Policy Statements
A number of APHA policy statements address specific health issues, often within specific populations. This policy statement addresses the problem of poor access to medical, oral, and behavioral health care services among persons with intellectual and developmental disabilities (I/DDs) in broad terms, promotes a general theory of the etiology and breadth of the problem, and recommends action steps toward a comprehensive approach to improving integrated health access. Related APHA policy statements that address specific health issues are as follows:
- APHA Policy Statement 200117: Support the Framework for Action on Oral Health in America: A Report of the Surgeon General
- APHA Policy Statement 200120: Support for Culturally and Linguistically Appropriate Services in Health and Mental Health Care
- APHA Policy Statement 20079: Building a Public Health Infrastructure for Physical Activity Promotion
- APHA Policy Statement 200911: Public Health’s Critical Role in Health Reform in the United States
- APHA Policy Statement 201011: Reforming Primary Health Care: Support for the Health Care Home Model
- APHA Policy Statement 201013: American Public Health Association Child Health Policy for the United States
- APHA Policy Statement 201111: Prioritizing Noncommunicable Disease Prevention and Treatment in Global Health
- APHA Policy Statement 201310: Solitary Confinement as a Public Health Issue
Adults with I/DDs experience poorer medical and oral health than those without such disabilities.[1–3] Individuals with I/DDs are estimated to experience psychiatric disorders at rates four times higher than the overall population; even so, a third to a half of the psychotropic medications prescribed for this population are antipsychotics matched to aggressive behaviors rather than appropriate psychiatric diagnoses. In addition, there is a chronically unmet social and clinical need for sexual and reproductive health and abuse services for men and especially women with I/DDs.[6,7] For persons with I/DDs, health encompasses an array of medical and dental health needs met through health promotion and coordinated treatment.[8,9] Many individuals with I/DDs have comorbid conditions, are medically fragile, and require integrated and interdisciplinary care. This care is required under federal law for those residing in large institutions housing individuals with intellectual disabilities.[10,11] These federal care-related rights are not routinely mandated by state programs or laws for individuals with I/DDs not living in large residential facilities, a group that represents more than 90% of persons with I/DDs.
Poor oral health among persons with I/DDs leads to critical health outcomes that increase morbidity and mortality. The high costs of neglect and unnecessary loss of life reflect upon society’s values and understanding of the needs of individuals with I/DDs. Historical shifts in the United States, with the transition from an institutionalized medical model to a community-based social model to meet the needs of this population, continue to demonstrate persistent systemic discrimination that leads to health disparities. Because many providers are reimbursed per diagnosed therapy, willingness to treat complex patients with I/DDs who may require more time and effort may decrease; such practical challenges are compounded by payment structures (namely low Medicaid reimbursement rates) that do not take into account the additional time and effort needed to provide care for this population. In fact, 27 states provide no Medicaid dental coverage or offer emergency services only; just 24 states provide Medicaid coverage for non-emergency services.
It is imperative to address the structural barriers that exist for individuals with I/DDs in accessing high-quality oral and overall health care, particularly as this population integrates more fully into community settings with varying insurance coverage. This problem can be addressed through data that can identify and champion policy strategies to dramatically improve the oral health status and, consequently, the overall health and well-being of the most vulnerable citizens in the United States. As reported in a study conducted by Havercamp and Scott,, “significant disparities in health and health care utilization were found for adults with disability and developmental disability relative to adults without disability.” Also, the authors stated that “it was striking that the IDD group was significantly less likely to receive a [prostate-specific antigen] test and that both the disability and IDD groups were significantly less likely to be referred for specialized services such as [a] Pap test and mammogram.”
Evidence-Based Strategies to Address the Problem
The American Academy of Developmental Medicine and Dentistry (AADMD) advocates a public health strategy of oral health promotion, prevention, and treatment integrated with medical care for persons with I/DDs. The APHA Oral Health Section and the AADMD recommend that APHA effectively advocate for the implementation of evidence-based interdisciplinary models of care that can significantly improve the health status of this vulnerable population and demonstrate effective healthy outcomes. Health promotion efforts must be specifically designed for this population on the basis of effective surveillance of health status, health risk behaviors, and access to care.
Promoting regular dental visits is one of the cornerstones of preventive dentistry for all adults with or without disabilities. In a 2004 North Carolina study comparing adults without disabilities and adults with I/DDs, significant disparities in medical care use were noted with respect to breast and cervical cancer screenings as well as oral health care. This lack of preventive care for adults with I/DDs has resulted in higher morbidity and mortality.[8,17] The Centers for Disease Control and Prevention and others have noted that, in the case of adults with I/DDs, population health surveillance does not fully detect the extent of these disparities.[13,17] Identifying people with I/DDs and providing them access to integrated care is difficult. The most cost-effective solution is Federally Qualified Community Health Centers (FQHCs). Although not all FQHCs integrate oral health services, most offer an interprofessional health home model that has the capacity to effectively provide care to this population alongside other vulnerable individuals.
Persons with I/DDs do not live in segregated neighborhoods. This issue of geography is a barrier to these individuals being designated as a medically underserved population by the Health Resources and Services Administration (HRSA), which would allow them access to affordable and comprehensive care by trained and qualified providers.[3,12] HRSA funding via the medically underserved population designation would include not only direct care provision through nationally funded FQHCs but also enhanced support for training the current and future generation of providers, both of which would result in expanded and higher quality dental and medical care. Federal action to respond to the gaps in treating this population would also allow an opportunity to develop standardized policies regarding ambiguous and convoluted practices for evaluating decision-making capacity, informed consent, and restraint/sedation considerations.
Three specific public health actions are proposed by the APHA Oral Health Section and the AADMD to reduce health disparities among persons with disabilities: (1) strengthening the capacity of the health workforce to serve persons with I/DDs,[12,13,19] (2) including people with disabilities in mainstream preventive health programs and services, and (3) identifying individuals with I/DDs in health records and surveillance systems to create data-driven health policies. These steps would also provide an integrated, effective system of health care for adults with I/DDs.9,12,13,17]
It is a common misconception that health care quality has improved for all persons with disabilities and that an adequate number of trained clinicians are available. Recent emphasis has been placed on the need for recognition of disparities among individuals with disabilities; although specific issues concerning intellectual and developmental disabilities have been noted, a firm stance on advocating for the larger disability community has been maintained. However, as a result of a lack of adequate funding as well as a lack of clinical providers trained to treat this specific population, adults with I/DDs face far more barriers to care than the broader disability community. In addition, former US Surgeon General David Satcher has stated concern regarding the poor oral health status of persons with mental retardation and the lack of health surveillance data for this population (archived testimony of Dr. David Satcher, US Department of Health and Human Services, August 11, 2016).
Although education is improving in medical and dental schools in the area of special care, few new providers are able to serve this population and repay their educational debt. Also, few trained clinicians caring for adults are trained to the level of a developmental pediatrician or pediatric dentist. Moreover, the adult medical needs that accompany aging (e.g., dementia) and the medical and dental needs of those with adult dentition cannot be met by pediatric clinicians.
The existence of federal laws that declare medical and dental services as a “right” and require comprehensive integrated health care is believed by some to be adequate to alleviate these health disparities.[10,11] However, the public policies and attitudes of providers of care are barriers to mandates that are largely overlooked. Children with I/DDs are able to access dental and medical services through the Early Periodic Screening and Diagnostic Services benefit, enforced by the Centers for Medicare and Medicaid Services. After adolescence, many young people are unable to continue health care in the transition from pediatric to adult health systems despite the existence of a federal law mandating access to care. Adapting policies to reflect the needs of this population necessitates research that is difficult to conduct due to concerns associated with exploitation, consent, and autonomy with clinical interventions (restraint and sedation in particular) and confidentiality.
- The Department of Health and Human Services should develop an integrated public health plan intended to ameliorate the negative effects of social determinants of health and promote positive oral health outcomes among persons with I/DDs in the United States.
- The Department of Health and Human Services should designate persons with intellectual disabilities living in community settings as an oral health and medically underserved population, which would allow the Health Resources and Services Administration to invest in training the workforce through residencies and policies that promote oral health for persons with I/DDs.
- The Department of Health and Human Services should construct an integrated and multidisciplinary database of surveillance measures that can be used to expand analyses of the oral health outcomes of persons with I/DDs that are associated with behavioral challenges and the lack of integrated, coordinated care that occurs in community settings.
- The Public Health Accreditation Board should regularly assess its standards and guidelines 8to encourage state, county, and city health departments to focus on integrating dental and medical health care for persons with I/DDs and creating effective treatment strategies, including training of professionals and promotion of positive oral health among caregivers and families of persons with I/DDs.
- The Centers for Medicare and Medicaid Services should require state Medicaid funding to include dental services for adults with I/DDs living in the community that meet the institutional level of care standards for an Intermediate Care Facility for Persons with Intellectual and Developmental Disabilities (ICF/ID).
- The Health Resources and Services Administration should designate adults with I/DDs as a medically underserved population to increase their access to providers who are members of well-trained, interdisciplinary health teams at federally qualified health centers, ICF/ID residential facilities, and academic health centers.
1. Krahn GL, Hammond L, Turner A. A cascade of disparities: health and health care access for people with intellectual disabilities. Ment Retard Dev Disabil Res Rev. 2006;12:70–82.
2. National Institute of Dental and Craniofacial Research. Oral Health in America: A Report of the Surgeon General. Rockville, MD: US Department of Health and Human Services; 2000.
3. Anders PL, Davis EL. Oral health of patients with intellectual disabilities: a systematic review. Spec Care Dentist. 2010;30:110–117.
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9. Kornblau BL. The case for designating people with intellectual and developmental disabilities as a medically underserved population. Available at: http://autisticadvocacy.org/wp-content/uploads/2014/04/MUP_ASAN_PolicyBrief_20140329.pdf. Accessed November 19, 2016.
10. US Government Publishing Office. Intermediate care facilities for the mentally retarded rules: United States Code of Federal Regulations, 42 CFR 483.460. Available at: https://www.gpo.gov/fdsys/granule/CFR-2010-title42-vol5/CFR-2010-title42-vol5-sec483-460. Accessed November 19, 2016.
11. US Government Printing Office. Rights of individuals with developmental disabilities: United States Code, 42 USC 15009 (a) (3) (B) (ii). Available at: https://www.gpo.gov/fdsys/pkg/PLAW-106publ402/html/PLAW-106publ402.htm. Accessed November 19, 2016.
12. Fenton SJ, Hood H, Holder M, May P, Mouradian WE. The American Academy of Developmental Medicine and Dentistry: eliminating health disparities for individuals with mental retardation and other developmental disabilities. J Dent Educ. 2003;67:1337–1344.
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17. Thomson WM, Williams SM, Broadbent JM, Poulton R, Locker D. Long-term dental visiting patterns and adult oral health. J Dent Res. 2010;89:307–311.
18. Altman B, Andresen E, Bradley V, et al. U.S. surveillance of health of people with intellectual disabilities. Available at: http://www.cdc.gov/ncbddd/disabilityandhealth/pdf/209537-a_idmeeting-short-version12-14-09.pdf. Accessed November 19, 2016.
19. Harder and Company Community Research. A blind spot in the system: health care for people with developmental disabilities. Available at: http://odpc.ucsf.edu/sites/odpc.ucsf.edu/files/pdf_docs/A%20Blind%20Spot%20in%20the%20System.pdf. Accessed November 19, 2016.
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22. Centers for Medicare and Medicaid Services. Early Periodic Screening and Diagnostic Services. Available at: https://www.medicaid.gov/medicaid/benefits/epsdt/index.html. Accessed November 19, 2016.