Social supports and prevention strategies as adjuncts and alternatives to sedation and anesthesia for people with special needs

ABSTRACT

People with special needs are assuming a more prominent place in our society. The number of people living in communities with medical, physical, and psychological conditions is increasing dramatically. In spite of the advances that people with special needs have made in recognition of their right to live in society and access services open to other people, their oral health is still significantly poorer than that of other groups.

There are a number of modalities that can complement or replace pharmacological interventions and allow individuals to have dental treatment in a dental office or clinic. These include behavioral or psychological interventions and social support and prevention strategies. Social supports include care management and integration of oral health services with general health and social service systems.

Preventive programs using modern “medical model” oral health prevention strategies also have the potential to reduce the burden of disease among people with special needs and therefore reduce the need for dental procedures. A social support system using community-based Dental Hygienists acting as Dental Coordinators, is described along with outcomes demonstrating improved oral health for people with special needs living in community residential care facilities. Combined social support systems and community prevention strategies have the potential to reduce the need for pharmacological interventions in order to maintain oral health in populations of people with special needs. Social supports and modern preventive strategies must be included in the range of options available in communities in order to improve and maintain oral health for people with special needs.

The role and status of people with special needs in society

People with special needs are assuming a more prominent place in our society. The number of people living in communities with medical, physical, and psychological conditions is increasing dramatically.^1–4 There are multiple factors fueling this increase. Among these is the fact that greater numbers of people with severe disabilities who are now able to survive to adulthood.^5–8

In addition to the increasing number of individuals in society, the trend toward deinstitutionalization in the last 5 decades means that most individuals who formerly lived, or would have lived, in institutional settings now live in community settings. In the late 1960s, recognition of the rights of persons with disabilities to live in communities and to participate in society was directly recognized in the passage of the Rehabilitation Act of 1973 (P.L. 93–112).⁹ Also, other legislative and social changes such as the provisions of the Social Security Act that established Intermediate Care Facilities for the Mentally Retarded (ICF/MR) shifted funds away from institutions, and provided funds via Supplemental Security Income (SSI) program to support community living.^10–12 The Education for All Handicapped Children Act (P.L. 94–142) of 1975 provided local community education for children who had previously been sent away to public institutions.¹³

In 1977, state institutions in the United States housed 53,000 children and youth 21 years and younger with mental retardation; by 1996 less than 3,000 youth and children live in state MR/DD institutions.¹⁴ While the depopulation and decrease in census of state institutions varied state to state, between 1967 and 1977 there was a 71% reduction in the number of individuals in state institutions across the country.¹³

In addition to greater number of individuals in society and the movement to community living arrangements, the rights of people with disabilities to live in society and access facilities and services available to others have been clearly recognized in the American with Disabilities Act of 1990 and other legislation.^15,16 These factors have led to a general recognition of the rights of people with special needs to fully participate in our society.

Oral health and people with special needs

In spite of the advances that people with special needs have made in recognition of their right to live in society and access services open to other people, their oral health is still significantly poorer than that of other groups. They have more dental disease, more missing teeth, and more difficulty obtaining dental care than other members of the general population.^17–20

When people with special needs obtain access to dental treatment services, a significant number receive dental treatment under general anesthesia. While many people with disabilities can be treated in a dental office or clinic, it has been reported that for about 20% of people with a disability, general anesthesia (GA) was used to provide dental treatment.²¹ In some tertiary health centers that act as the only referral site for people with moderate-to-severe disabilities, up to 60% of the patients have required GA for treatment.²²

As indicated in other articles in this issue, there are a number of modalities that can complement or replace pharmacological interventions and allow individuals to have dental treatment in a dental office or clinic. These include behavioral or psychological interventions and social support and prevention strategies. This article will focus on the latter two interventions—social support and prevention strategies.

The role of case management in improving health of underserved populations

There is an extensive literature on the use of case management systems to improve general health. Case management systems have been used extensively in social work, nursing, pharmacy, managed medical care, and other disciplines. Use and outcomes of case management and attempts to quantify its results have been extensively documented.^23,24 A literature search using the Medline database resulted in 621 references in the last decade that matched the term “case management.” A review of these references revealed 63 that included some reference to the use of case management systems to improve oral health. However, most of these did not describe actual case management systems, nor did they measure improvements in oral health related to case management. Given the wide spread acceptance of case management interventions in other health fields there is certainly potential for improving oral health through the use of this type of intervention.²⁵ This article will describe a demonstration project that used this methodology and documented oral health improvement results.

Oral health prevention programs for people with special needs

Modern oral prevention techniques have progressed far beyond chair side instruction in techniques of brushing and flossing. It has become clear that: dental caries is an infectious disease; that beginning lesions can be repaired with medications (the “medical model”); and that there is a balance of factors that, depending on the frequency and quantity of their presence, can lead to progress or repair of carious lesions.^26–29 These findings have profound implications for improving oral health of people with special needs. However, most of the research on this new model of oral disease has excluded people with special needs in order to reduce the variables in these research projects.

In order to determine the best ways to apply modern prevention practices in populations of people with special needs, the Pacific Center for Special Care at the University of the Pacific, Arthur A. Dugoni School of Dentistry convened a conference in 2002 for this purpose. Experts in several modern prevention methods were asked to “read between the lines” of the existing research and determine the best way to use these interventions with people with special needs. This conference resulted in a publication of a consensus statement on “Practical protocols for the prevention of dental disease in community settings for people with special needs” and a number of background papers.^30–32 The consensus statement described protocols for the use of xylitol, fluoride varnish, fluoride rinses, high-dose fluoride toothpaste, and chlorhexidine. The consensus statement also concluded that, although little research has focused on the results of these “medical model” prevention treatments for people with disabilities, there is every reason to believe that they would be effective in reducing oral diseases in these populations.

The authors of this article have conducted a number of projects to determine the best way to engage caregivers in carrying out preventive practices for people with special needs. They have developed a set of training materials called Overcoming Obstacles to Dental Health: A Training Program for Caregivers of People with Special Needs.³³ This pyramid training program emphasizes techniques for overcoming major informational, behavioral, and physical obstacles and includes an oral health planning process for use by caregivers. These principles of oral health training are also documented in other publications.^34,35 The authors have demonstrated that these materials can be effective in improving knowledge of caregivers about oral health prevention strategies and improving oral health of the people they care for if the use of the training materials is supplemented with on-site mentoring and coaching.³⁶

As with the application of social support systems, these results demonstrate the potential to reduce the burden of disease among people with special needs and therefore reduce the need for dental procedures. Again this has the potential to reduce the need for pharmacological interventions in order to maintain oral health in populations of people with special needs.

Community-based systems to improve oral health for people with special needs

Over the last 2 decades the authors of this article have developed and implemented several pilot community-based systems to improve oral health for people with special needs.^37,38 These systems incorporate social supports, case management, and prevention programs and are based on the premise that some problems can be solved at the systems level rather than the individual health care level. A description of these systems was the only oral health presentation made at the 2001 Surgeon General's Conference on Health Disparities and Mental Retardation.³⁹ These systems have resulted in

• • 
  increased resources for oral health care,
• • 
  improved oral health, and
• • 
  integration of oral health issues into systems and services provided by general health and social service systems.

A community-based system demonstration project

In the project reported here, the authors conducted a large demonstration project using the community-based oral health system in eight communities in California. This project involved over 6,000 individual with developmental disabilities. This demonstration project was an example of the application of social supports and prevention programs as adjuncts and/or alternatives to sedation and general anesthesia. The methods and outcomes of this demonstration of social supports and prevention programs are reported below.

Methods

Eight dental hygienists were hired using grant funding to work as Dental Coordinators (DCs) with eight of the 21 California Regional Centers. These are social service agencies with long-term contracts with the California Department of Developmental Services that provide assessment, case management, and referral services for people with developmental disabilities.⁴⁰ In the Regional Center system people receiving services from the regional centers are referred to as “consumers.” Each dental hygienist worked 2 days per week for this project. Although the total consumer population for these eight Regional Centers is approximately 50,000 people, geographic subsets of these populations were selected for this demonstration. Each DC was responsible for oral health services for about 800 consumers. In addition, each DC tracked 100 consumers very closely, collecting detailed data about pre- and post-project oral health, oral health services needed, and interventions and services provided. This provided a subpopulation of 800 people which formed the basis for the detailed analysis of outcomes data. Consumer data were collected using surveys of caregivers and screening examinations performed by the DCs. The screening examinations were visual examinations. They were not designed to develop a specific diagnosis. Rather, the objective was to provide a general categorization of dental findings and needs in order to facilitate an appropriate referral.

The system developed in each Regional Center area involved coordination of efforts of a number of entities within the community including: individuals; professional associations; oral health, social service, and general health professionals; social service agencies; hospitals; and dental education institutions. With training and assistance from the authors the DCs began the project in each community with an assessment of existing community resources. This involved interviewing representatives of the groups listed above, conducting surveys of existing resources, and determining the interest of individuals and agencies that were potential resources. From this assessment, a customized system was established for that community.

The customized community systems that were developed for this demonstration project had a number of common elements. These include the following:

• • 
  As indicated, a “Dental Coordinator” (DC) was hired to act as a liaison between the oral health community and community social service agencies, hospitals, and other interested agencies and individuals. The DC played a pivotal role in the success of these community-based systems. A more detailed description of the role of the DC is included below.
• • 
  A screening/triage/referral/tracking system was established to identify individuals in need of dental services and get those individuals to the most appropriate resource for them.
• • 
  Community oral health professionals were trained about considerations in providing oral health care for people with special needs through in-person and on-line continuing education programs.
• • 
  Facilities and protocols were established for providing hospital dental services in communities that did not have these services in place.
• • 
  Community-based individual and group oral health prevention programs were established.

In many respects, the Dental Coordinator acted as a “dental case manager.” The role of the DC included the following activities:

• • 
  Leverage local resources: This involved determining what resources already existed in the community and helping to facilitate communication between those resources. In many communities, there were practitioners willing to treat some people with special needs and social service professionals who did not know that these oral health professionals existed. The DC had an obvious role making those individuals aware of each other.
• • 
  Develop local resources: In many communities, there were one or more critical resources in short supply or totally lacking. In some communities the DC, with assistance and consultation from the authors, helped set up hospital facilities and protocols and trained community dentists to work in a hospital environment. In other communities developing local resources involved working with individual dental offices to support them in seeing people with special needs that were pre-screened to be sure they were appropriate to receive care in that office.
• • 
  Screen, triage, refer, track and manage emergency, and routine dental care: The DC conducted a series of screening clinics to identify individuals in need of dental services. Screening information collected included: dental findings, predictions about dental treatment needed, predictions about the individual's ability to cooperate for dental treatment in a dental office, and recommendations about the best setting for receiving future dental care. Individuals were then referred to appropriate treatment resources and tracked to be sure that they received the care they needed.
• • 
  Conduct individual and group prevention programs: The DC identified opportunities to provide oral health prevention education. In some cases, this was provided in individual settings and sometimes in groups. In a number of communities, the DC was involved in ensuring that an individual who had dental treatment in a hospital under general anesthesia was involved in an intensive prevention program to reduce the need for further treatment in that environment. The DCs created and helped care-givers implement individual oral health prevention plans for consumers.
• • 
  Integrate oral health considerations into agency systems: A critical component of the community-based system and an important focus of the DC was to find ways to integrate oral health into systems and services in existence in social service and general health systems. This involved: including oral health information in intake processes; integrating oral health considerations in individual and program planning activities; and enlisting social and general health professionals in identifying the risk for oral disease and providing oral health prevention information.

The DCs engaged in these activities over a three-year period of time. During this time there was considerable interaction between the authors, the DCs in all communities, representatives of the Regional Center system, and other community stakeholders. This interaction was an important method of sharing successes and ideas that were incorporated in each customized community system.

Results

System changes and professional involvement

One outcome measure for this demonstration project was the services provided at the professional and organizational level. As indicated in Table 1, 5,000 out of a potential of 6,400 consumers received some services from the DCs. There were 223 dental practices that agreed to begin to see people with developmental disabilities or increase the number of people they would see. There were also 102 dental hygiene and dental assisting education programs or community clinics that agreed to begin to see people with developmental disabilities in their clinical facilities or to increase the number of people they would see. In addition, DCs presented prevention education programs and training sessions that involved over 9,000 consumers and caregivers.

Table 1.  The community-based system demonstration: quantitative measures of system change, training, and services provided.

Consumers who received some services (screening, referral, education, etc.) from Dental Coordinators	5,000
Dental practices which agreed to see people with disabilities or increase the number of people with developmental disabilities they were seeing	223
Dental hygiene and dental assisting education programs and community clinics which agreed to see people with developmental disabilities in their clinics	102
Consumers and caregivers who participated in prevention education programs	9,000
Oral health, general health, and social service professionals who received training about oral health and developmental disabilities	4,000

Other system change outcomes included:

• • 
  All of the Regional Centers increased the amount of data collected about oral health in their initial intake systems.
• • 
  The Department of Developmental Services added oral health questions to their statewide client information database.
• • 
  The Department of Social Services, Division of Community Care Licensing and the Department of Health Services, Divisions of Health Care Licensing added oral health information to their training programs for licensing evaluators.
• • 
  The Department of Developmental Services added an oral health chapter to their mandatory statewide Direct Support Professional training program.⁴¹
• • 
  There was a 51% improvement in reports of people having problems finding dental care.
• • 
  There was a 50% improvement in individuals having problems finding dental care because they were afraid of dental treatment.
• • 
  All of the Regional Centers that participated in this demonstration project now have replaced the initial grant funding with budgeted dollars to continue the role of the DC.

Population characteristics

Out of the 6,400 people in the target service population of the DCs about 5,000 received some services from a DC. About half of those completed an intake process with background data provided by their caregivers and screening data collected by the DC. However, for some individuals full data set was not available. Others had more limited interventions such as a referral to a source of care without screening, participation in a prevention program, consultation provided to a Regional Center Case Manager, etc. The gender, age, living arrangements, disability breakdown, and wheelchair use of those individuals where full data were collected are presented in Table 2. These data were generally in line with the breakdown of these characteristics on a statewide basis when compared to data from the Department of Developmental Services although the consumers in this project were a little older than consumers statewide (M = 35.6 years, SD = 16.7 for participants; M = 25.0 years, SD = 16.8 for consumers statewide). The male-to-female ratio was close to even. The vast majority of participants had mental retardation and the largest proportion lived in community care facilities (typically group homes). About 20% used wheelchairs.

Table 2.  The community-based system demonstration: gender, age, living arrangements, disability breakdown, and wheelchair use of those individuals where full data were collected.

Gender (n = 1,306)
Males	56%
Females	44%
Age (n = 1,306)
Birth–2 years	1.2%
3–13 years	10.2%
14–21 years	7.3%
22–31 years	17.8%
32–41 years	24.2%
42–51 years	22.4%
52–61 years	9.6%
62 years and older	7.0%
Unknown	0.8%
Living arrangements (n = 1,250)
At home, independent or semi-independent	6.5%
At home, under care of parents or guardians	32.8%
Community care facility	41.6%
Intermediate care facility or skilled nursing facility	18.6%
Developmental center	0.5%
Disability (n = 1,306)—Note: individuals could report multiple disabilities
Mental retardation	90.8%
Cerebral palsy	20.9%
Autism	8.5%
Epilepsy	16.8%
Other	15%
No response	1%
Uses a wheelchair
Yes	18.9%
No	81.1%

Oral health findings

Table 3 lists some selected oral health findings and recommendations for the 800 individuals who were tracked closely by the DCs and for whom data were available before and after the 3-year demonstration project. These data came from visual screening examinations performed by the DCs. There were specific criteria for each of the categories listed. DCs were trained and calibrated in using these criteria.

Table 3.  The community-based system demonstration: selected oral health findings and recommendations for the 800 individuals who were tracked closely by the DCs and for whom data were available before and after the 3-year demonstration project.

	Before N = 800	After N = 610
Cavities present
None visible	70.9%	82.4%*
Few small	16.8%	11.2%*
Few large	12.4%	5.3%*
Few severe	2.04%	1.55%
Many small	6.6%	1.9%*
Many large	3.8%	1.9%*
Many severe	2.5%	0.2%*
Gingivitis present
Healthy	29.0%	44.1%*
Minor gingivitis	34.0%	1.0%
Moderate gingivitis	27.6%	19.3%*
Severe gingivitis	9.9%	7.7%
Prediction of restorative and surgical dental treatment needs
None indicated	61.3%	81.3%*
Few small fillings	15.7%	10.0%*
Few large fillings	13.2%	4.7%*
Many small fillings	7.2%	2.0%*
Many large fillings	4.3%	1.8%*
Few root canals	4.0%	1.8%*
Many root canals	1.2%	.4%
Many simple extractions	1.8%	1.1%
Many difficult extractions	1.2%	0.2%*
Prediction of urgency of treatment needed
No treatment needed—continue regular recall visits	47.4%	67.9%*
Need treatment, not urgent	43.3%	17.9%*
Need urgent treatment	10.9%	15.0%*
Prediction of amount of treatment needed (number of visits) to accomplish needed treatment
Minor (0–2 visits)	69.3%	81.0%*
Moderate (3–4 visits)	24.7%	13.0%*
Extensive (5 or more visits)	7.6%	2.1%*
Prediction of supports (behavioral, physical, pharmacological) needed for future office-based dental treatment
No supports needed	31.0%	48.2%*
Behavioral supports needed	16.9%	12.9%*
Minimal sedation needed (oral or N2O)	7.9%	3.1%*
Moderate or deep sedation needed	4.9%	3.4%*
Note: These results were from visual screening examinations. There were specific criteria, not reproduced here, for each of these categories.		*p < .05.

It can be seen from the data in the table that there were improvements in many measures of oral health and in the amount of dental treatment needed. There were fewer cavities and less gingivitis present at the end of the demonstration project than before. The predictions for dental treatment needs included the need for fewer root canals, restorations, and extractions.

In general, there were also improvements in the total amount and urgency of treatment needed. The one result contrary to this general finding was the small increase in the predicted need for urgent care.

Finally, there were improvements in the predicted need for behavioral, physical, and pharmacological supports for future dental treatment.

Cost-effectiveness analysis

There were multiple variables in the system described above, making an exact cost-effectiveness analysis impossible. Nevertheless, some estimate can be made of the reduction in disease burden among the target population which can be extrapolated to estimate future costs. Each category in the screening examination was given a dollar value based on n average of the California Medicaid (Denti-Cal) fees that would apply to that category. Using these dollar values and the definitions established for each category, a dollar value was determined for the cost of dental treatment predicted for each individual. The average costs of the predicted treatment needed for the 800 individuals who were closely tracked before and after the demonstration project was $442 before and $178 after for a cost reduction of $264. This reduction was only for the dental procedures and did not count charges for hospitalization, sedation, or anesthesia. While it could be argued that some of reduction in dental treatment needs was because some people received dental treatment, it could be predicted that this reduced level of need was likely to be sustained now that these individuals were being actively managed by the DCs and involved in much more rigorous prevention programs than they were previously. Even if only half of the reduction was sustained on a long-term basis that could represent a savings of almost $1 million annually for the people in this demonstration project and almost $25 million annually for the population of people with developmental disabilities served by the Regional Center system in California. The cost of the DC's salaries and other expenses for this program was only about $225,000, much less than the savings.

In addition to the dollar savings, the reduced burden of disease would certainly make some individuals better able to have dental treatment performed in a dental office with less or no behavioral or pharmacological supports.

Discussion

The community-based demonstration project described here clearly resulted in a decreased burden of disease for the target population. In addition, it resulted in an improvement in a number of measures of people's ability to have dental treatment performed in a dental office without the need for behavioral, physical, or pharmacological supports.

Given these outcomes, the application of this type of system certainly has the potential to reduce the need for pharmacological interventions in order to provide dental treatment for populations of people with developmental and other disabilities. This outcome can be attributed to two reasons. First, application of this community-based system reduced the burden of dental disease. Less disease means a reduced need for treatment. Treatment that is needed is therefore usually less involved. Both of these results would make it more likely that an individual could have the reduced amount of treatment needed carried out in a dental office with less need for pharmacological intervention.

Second, this community-based system raised the awareness of caregivers and general health and social health professions about the need for good oral health. This awareness resulted in earlier referrals, better preparation for dental visits, increased prevention activities, increased oral stimulation and therefore less fear of dental procedures. Again, these outcomes would make it more likely that an individual could have treatment carried out in a dental office with less need for pharmacological intervention.

Unfortunately, current reimbursement systems for oral health care do not recognize the value of social supports or community-based prevention activities. Continued efforts are needed to demonstrate the value of these interventions and to advocate for their inclusion in reimbursement systems.

Summary

People with special needs are assuming a more prominent place in our society. The number of people living in communities with medical, physical, and psychological conditions is increasing dramatically. In spite of the advances that people with special needs have made in recognition of their right to live in society and access services open to other people, their oral health is still significantly poorer than that of other groups.

There are a number of modalities that can complement or replace pharmacological interventions and allow individuals to have dental treatment in a dental office or clinic. These include behavioral or psychological interventions and social support and prevention strategies. Social supports include aspects of a community-based prevention system, using Dental Hygienists as Dental Coordinators performing case management activities, that has been shown to improve oral health for people living in community residential care facilities. Social supports and modern preventive strategies must be included as reimbursable options for delivering dental treatment for people with special needs in order to optimize their oral health in a cost-effective manner.