Improving and Maintaining Oral Health for People with Special Needs

The number of people in the United States population with disabilities and other special needs is growing dramatically. These individuals present unique challenges for oral health professionals in planning and carrying out dental treatment and for the oral health delivery system. Because it has been recognized that the current delivery system is not working well for these populations, new workforce, financing, and delivery models are beginning to emerge that may hold promise for creating and maintaining oral health for currently underserved populations, including people with disabilities and other special needs. This article discusses the implications of this for the oral health profession, describes the challenges of providing oral health services for this population, and discusses the implications of these challenges for the organization of the oral health delivery system.

Who are people with special needs?

There are many terms that have been used to describe people who have trouble receiving dental treatment in a routine manner. These include “people with special needs,” “children with special health care needs,” “people with disabilities,” and “people with complex needs,” among other terms . Some of these terms, such as “children with special health care needs” or people with “developmental disabilities” have definitions that are found in federal regulations and used for collection of data and funding purposes . Other terms, such as “people with special needs” or “people with disabilities” do not have generally agreed upon definitions, although they are widely used and useful in describing populations who afford challenges in providing oral health services. For the purpose of this clinically focused article, the terms “people with special needs” and “people with disabilities” will be used interchangeably, and a broad definition of these terms will be used: people who have difficulty accessing dental treatment services because of complicated medical, physical, social, or psychologic conditions . This article discusses the implications for the oral health profession, given an expanding population of people with special needs, describes the challenges of providing oral health services for this population, and discusses the implications of these challenges for the organization of the oral health delivery system.

The population of people with special needs is increasing dramatically

The number of people with special needs who need oral health services is rising dramatically. The United States Census reported in 2000 that 49.7 million people in the United States population had a long-standing condition or disability . They represented 19.3% of 257.2 million people who were aged 5 and older in the civilian noninstitutionalized population, or nearly one person in five. Fig. 1 illustrates that the major areas of disability are physical, sensory, and mental disabilities, as well as difficulty going outside. A significant portion of the population, 9.5% of those over age 65, also have problems with basic self care. Also of interest in the 2000 census data was the finding that 46.3% of people with at least one disability reported having more than one diability.

Fig. 1
Population with disabilities by age and type of disability. ( Data from US Census Bureau, Census 2000 Summary File 3.)

There is an extensive body of literature that demonstrates that people with disabilities have more dental disease, more missing teeth, and more difficulty obtaining dental care than other members of the general population . People with developmental disabilities who reside in community settings have significant unmet medical and dental needs . The situation is worse for individuals with disabilities who live in rural areas .

The Surgeon General’s Report on Oral Health points out that people with mental retardation (MR) or other developmental disabilities have significantly higher rates of poor oral hygiene and an increased need for periodontal treatment than the general population . People with disabilities also have a higher rate of dental caries than the general population, and almost two thirds of community-based residential facilities report having inadequate access to dental care [Dwyer, Northern Wisconsin Center for the Developmentally Disabled, unpublished data, 1996]. Untreated dental disease has been found in at least 25% of people with cerebral palsy, 30% of those with head injuries, and 17% of those with hearing impairment . A study commissioned by the Special Olympics concluded that individuals with MR have poorer oral health, more untreated caries, and a higher prevalence of gingivitis and other periodontal diseases than the general population .

In 1999 the United States Special Olympics Special Smiles Program performed extremely conservative oral assessments (no x-rays, mirrors, or explorers) of athletes of all ages, and found that 13% of the athletes reported some form of oral pain, 39% demonstrated signs of gingival infection, and nearly 25% had untreated decay [Oral health status and needs of Special Olympics athletes—world summer games, Raleigh, North Carolina: June 26 – July 4, 1999. Special Olympics International, unpublished report, 1999]. These findings are in a population that tends to be from higher-income families. However, people from lower socio-economic groups and those covered by Medicaid also have more dental disease and receive fewer dental services than the general population, and many individuals with disabilities are in these lower socio-economic groups .

The number of people with disabilities living in communities and seeking oral health care is also impacted by the movement toward deinstitutionalization. In the mid-20th century, many people with physical and mental disabilities were institutionalized and institution-based preventive dentistry programs were developed . However, since the 1970s, almost two-thirds of those residing in institutional settings have been moved into community-based settings, and dental care services, which had been available in the institution, are in many cases no longer unavailable for them . The idea that these individuals would be able to access generic oral health services available in the community has turned out to be wishful thinking not matched by reality. Annually, 36.5% of people 15 years and older and classified as severely disabled, reported a dental visit, compared with 53.4% of those with no disability . Few states cover dental services for adults under Medicaid. Even in those states with Medicaid coverage, low reimbursement rates and the reluctance of practitioners to accept those rates, reduces the availability care—including hospitalization and anesthesia—required for treating patients with disabilities .

The limited availability of dental providers trained and willing to serve people with special needs, and limited third-party support for the delivery of complex services, further complicates the problem of limited access to oral health services . Some believe that the United States health care system discriminates against people with disabilities because health care professionals are uncomfortable working with people with disabilities and find ways not to treat them .

The nation’s aging adult population is especially at high risk for dental problems, particularly those elderly with health problems or other disabilities. An estimated 70% of the nation’s 2-million-plus nursing home population has dental problems, including dentures that do not fit, loss of some or all of their teeth, and most significantly, poor oral hygiene . Most people are aware of the “graying of America,” the phrase used to describe the fact that the number of people in the United States population over 65 has increased more than tenfold from 1900 to 2000, and represents almost 13% of the total population . These older adults are expected to grow to 70 million by 2030, when they will represent 20% of the population. Even more dramatic growth is expected in the number of people over the age of 85, which will reach 19 million by 2050, representing 5% of the total population. Fig. 2 illustrates the increase in the population over 65 and 85 in the coming decades. This oldest old-age group is especially important for the future of our health care system, because these individuals tend to be in poorer health and require more services than the younger old-age group.

Fig. 2
Growth in the elderly population. ( Data from US Census Bureau, Decennial Census Data and Population Projections.)

While most people are aware of the aging of the population, it is not widely understood that at the same time that the elderly population is increasing, the rate of edentulism is decreasing dramatically . In California, only 13% of people over 65 are edentulous now, compared with close to 50% only a few decades ago. Fig. 3 illustrates the dramatic drop in the edentulism rate from the early 1970s to the 1990s. This new population of “baby boomers with teeth” has invested heavily in maintaining oral health, has complex restorations that require maintenance, and will present significant challenges to the dental profession, as they become less able to maintain good oral health.

Fig. 3
Rate of edentulism in United States population. ( Data from National Center for Health Statistics, 1975, 1996.)

The population of people with special needs is increasing dramatically

The number of people with special needs who need oral health services is rising dramatically. The United States Census reported in 2000 that 49.7 million people in the United States population had a long-standing condition or disability . They represented 19.3% of 257.2 million people who were aged 5 and older in the civilian noninstitutionalized population, or nearly one person in five. Fig. 1 illustrates that the major areas of disability are physical, sensory, and mental disabilities, as well as difficulty going outside. A significant portion of the population, 9.5% of those over age 65, also have problems with basic self care. Also of interest in the 2000 census data was the finding that 46.3% of people with at least one disability reported having more than one diability.

Fig. 1
Population with disabilities by age and type of disability. ( Data from US Census Bureau, Census 2000 Summary File 3.)

There is an extensive body of literature that demonstrates that people with disabilities have more dental disease, more missing teeth, and more difficulty obtaining dental care than other members of the general population . People with developmental disabilities who reside in community settings have significant unmet medical and dental needs . The situation is worse for individuals with disabilities who live in rural areas .

The Surgeon General’s Report on Oral Health points out that people with mental retardation (MR) or other developmental disabilities have significantly higher rates of poor oral hygiene and an increased need for periodontal treatment than the general population . People with disabilities also have a higher rate of dental caries than the general population, and almost two thirds of community-based residential facilities report having inadequate access to dental care [Dwyer, Northern Wisconsin Center for the Developmentally Disabled, unpublished data, 1996]. Untreated dental disease has been found in at least 25% of people with cerebral palsy, 30% of those with head injuries, and 17% of those with hearing impairment . A study commissioned by the Special Olympics concluded that individuals with MR have poorer oral health, more untreated caries, and a higher prevalence of gingivitis and other periodontal diseases than the general population .

In 1999 the United States Special Olympics Special Smiles Program performed extremely conservative oral assessments (no x-rays, mirrors, or explorers) of athletes of all ages, and found that 13% of the athletes reported some form of oral pain, 39% demonstrated signs of gingival infection, and nearly 25% had untreated decay [Oral health status and needs of Special Olympics athletes—world summer games, Raleigh, North Carolina: June 26 – July 4, 1999. Special Olympics International, unpublished report, 1999]. These findings are in a population that tends to be from higher-income families. However, people from lower socio-economic groups and those covered by Medicaid also have more dental disease and receive fewer dental services than the general population, and many individuals with disabilities are in these lower socio-economic groups .

The number of people with disabilities living in communities and seeking oral health care is also impacted by the movement toward deinstitutionalization. In the mid-20th century, many people with physical and mental disabilities were institutionalized and institution-based preventive dentistry programs were developed . However, since the 1970s, almost two-thirds of those residing in institutional settings have been moved into community-based settings, and dental care services, which had been available in the institution, are in many cases no longer unavailable for them . The idea that these individuals would be able to access generic oral health services available in the community has turned out to be wishful thinking not matched by reality. Annually, 36.5% of people 15 years and older and classified as severely disabled, reported a dental visit, compared with 53.4% of those with no disability . Few states cover dental services for adults under Medicaid. Even in those states with Medicaid coverage, low reimbursement rates and the reluctance of practitioners to accept those rates, reduces the availability care—including hospitalization and anesthesia—required for treating patients with disabilities .

The limited availability of dental providers trained and willing to serve people with special needs, and limited third-party support for the delivery of complex services, further complicates the problem of limited access to oral health services . Some believe that the United States health care system discriminates against people with disabilities because health care professionals are uncomfortable working with people with disabilities and find ways not to treat them .

The nation’s aging adult population is especially at high risk for dental problems, particularly those elderly with health problems or other disabilities. An estimated 70% of the nation’s 2-million-plus nursing home population has dental problems, including dentures that do not fit, loss of some or all of their teeth, and most significantly, poor oral hygiene . Most people are aware of the “graying of America,” the phrase used to describe the fact that the number of people in the United States population over 65 has increased more than tenfold from 1900 to 2000, and represents almost 13% of the total population . These older adults are expected to grow to 70 million by 2030, when they will represent 20% of the population. Even more dramatic growth is expected in the number of people over the age of 85, which will reach 19 million by 2050, representing 5% of the total population. Fig. 2 illustrates the increase in the population over 65 and 85 in the coming decades. This oldest old-age group is especially important for the future of our health care system, because these individuals tend to be in poorer health and require more services than the younger old-age group.

Fig. 2
Growth in the elderly population. ( Data from US Census Bureau, Decennial Census Data and Population Projections.)

While most people are aware of the aging of the population, it is not widely understood that at the same time that the elderly population is increasing, the rate of edentulism is decreasing dramatically . In California, only 13% of people over 65 are edentulous now, compared with close to 50% only a few decades ago. Fig. 3 illustrates the dramatic drop in the edentulism rate from the early 1970s to the 1990s. This new population of “baby boomers with teeth” has invested heavily in maintaining oral health, has complex restorations that require maintenance, and will present significant challenges to the dental profession, as they become less able to maintain good oral health.

Fig. 3
Rate of edentulism in United States population. ( Data from National Center for Health Statistics, 1975, 1996.)

The economic burden of oral disease in people with disabilities

Oral health professionals who work with populations of individuals are aware of many instances where untreated oral disease in people with disabilities resulted in pain, suffering, high medical costs, and even death . For example, in Louisiana in 2003, a $70 extraction would have saved an elderly patient 15 days in the hospital, including 2 days in an intensive care unit, and a $35,000 medical bill . In California, a young autistic lady who was nonverbal began to act out and hit other residents of her community residential care facility. She was admitted to a locked psychiatric facility at a cost of $150,000 per year to the State of California. Fortunately, it was eventually discovered that she had dental problems. Once her dental problems were treated, her aggressive behaviors ceased and she was able to return to her community. The Pacific Center for Special Care at the University of the Pacific, Arthur A. Dugoni School of Dentistry produced a moving video of these events .

The vast majority of adults with disabilities are low income and very few states provide Medicaid dental benefits . There is evidence that people without sources of dental care turn to costly emergency room services and subsequent hospitalizations . There is also a growing body of literature on the association between oral disease and systemic health conditions. These conditions include heart disease, premature birth and low birth weight infants, nursing home acquired pneumonia, diabetes, and stroke .

People with disabilities have the highest incidence of general health problems in our society. In fact, it has been calculated that providing oral health benefits for the population of people defined under Medicaid as being “aged, blind, or disabled” would save enough money in Medicare and Medicaid general health costs to entirely pay for a national system of Medicaid oral health benefits .

Challenges in providing oral health care for people with disabilities

There are numerous challenges in providing oral health services for people with special needs that go beyond the normal considerations for other populations. These challenges require oral health professionals to have extraordinary training, empathy, patience, and desire to be successful. There are a number of areas where providing oral health services for these populations presents unique challenges.

First, there is a need to understand and to be prepared to work with people with a wide variety of general health conditions. While oral health professionals do not need to have complete knowledge of every general health condition that their patients present with, it is essential that they have the knowledge and experience to gather and apply the information they need. This implies the training and ability to function in health care teams and get consultations from physicians, social workers, and other general and social service professionals.

There is also a need for oral health professionals to understand the social service systems that operate in their community and the social context in which oral health services take place. They need to understand community living arrangements, social service agencies, and advocacy organizations operating in their community. They also need to understand the appropriate use of language when interacting with individuals with special needs and their caregivers. There is a growing movement advocating the use of “People First” language . This language emphasizes the fact that disability is a part of the human condition and all people want to be described by their abilities rather than labeled by their disabilities. An oral health professional who does not understand this language, and refers to people he or she treats as “the handicapped patients I see,” risks alienating the individual, their caregiver, and those advocating for full inclusion in our society.

Oral health professionals also need to understand the extraordinary vulnerability of people with special needs to abuse and neglect in our society . They need to understand how to recognize abuse and neglect and their role as mandated reporters. Oral health providers are health professionals, and as a part of the health care team they may find that their patients are depressed, suicidal, or unable to cope with various living challenges. They have an obligation to intervene, provide basic diagnosis and counseling, and make appropriate referrals for follow-up of these situations.

Oral health professionals need to understand how to prevent oral diseases in people with various disabilities. There are special challenges presented by working with someone where communication and even procedures need to be performed by a third person, the caregiver. Some people have limited physical ability to perform oral hygiene procedures, and “partial participation” programs need to be designed and performed. This term refers to having the individual do as much as they are able to, but having a caregiver ensure that needed prevention procedures are completed. There are numerous informational, physical, and behavioral obstacles to be addressed. These are described in detail in a caregiver training package titled “Overcoming Obstacles to Dental Health,” a training package for caregivers of people with disabilities . In addition to this package, there is a large amount of literature that describes the challenges and techniques for helping people with special needs prevent oral diseases .

Oral health professionals need to be familiar with a variety of treatment options for providing oral health services for people with special needs. Fig. 4 describes some of the modalities that are available to help people have dental services performed. The modalities on the left side of the continuum are those with the least expense and side effects. Oral health professionals who are in the best position to provide treatment using the optimal modality for the individual they are seeing are the professionals who have all these options available personally or by referral. For example, if there are no dental offices where behavioral or physical supports are provided in a given community, then more people may end up having dental treatment via sedation or general anesthesia than is necessary.

Oct 29, 2016 | Posted by in General Dentistry | Comments Off on Improving and Maintaining Oral Health for People with Special Needs
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