Improving Oral Health for People With Special Needs Through Community-Based Dental Care Delivery Systems
A program for helping special-needs patients in rural areas is discussed.
By Paul Glassman, DDS, MA, and
Christine Ernst Miller, RDH, MHS, MA
 |
A community-based dental care delivery system is described. This system has been used in a number of communities in California to improve oral health for people with special needs. It includes oral health assessment, coalition building, development and networking of local resources, training of dental professionals, and utilization of preventive dentistry training materials. Also discussed are challenges of the future that will need to be met to continue to make oral health a priority and reality for people with special needs in California. |
Article copyright 1998 Journal of the California Dental Association.
Photographs copyright of the authors.
In California, inadequate access to medical and dental care for people with special needs
remains a significant problem. In this context, "special needs" refers to medical, social,
psychological, or physical conditions that make it necessary to modify the normal course of
dental treatment. Examples of such conditions include medical and developmental disabilities;
problems associated with aging; and psychological problems, including dental phobia.
Individuals with such conditions have been termed "special patients."1
In studies of special patients, such as people with developmental disabilities residing in
community settings, it has been reported that these individuals have significant unmet
medical needs in general,2-6 as well as significant unmet dental needs.7-11 These findings are
even worse for individuals with disabilities who are living in rural areas of our country,12 and
conditions are further complicated by the increasing trend to move individuals with severe
disabilities out of institutions. Many individuals have been moved into community living
situations with inadequate arrangements for medical and dental services.4-6
There have been many programs developed to provide services to individuals with special
health problems.13-18 The Federal Administration on Developmental Disabilities funds
University Affiliated Programs that utilize the resources of institutions of higher education to
provide services to individuals with disabilities. These university programs have incorporated
outreach activities. However, many have concentrated their efforts in those urban centers
where the University Affiliated Program is located.19 In spite of these and other efforts,
access to effective dental care remains a problem for many individuals with disabilities
residing in community living situations.20-22
One of the problems faced by individuals with severe disabilities and severe dental
problems
is the fact that they may require dental treatment in a hospital. In urban centers, there are
often adequate resources for hospital dental care that are not present in other areas. There are
few reports that describe methodologies for developing hospital dental services for an
undeserved rural disabled population.23 A review of alternative dental care delivery systems
for individuals with severe disabilities living in the community found discussions of
institution-based programs where individuals in rural settings would need to travel to an
institution for care. Also discussed were mobile programs in which limited dental care might
be available in the local communities on a sporadic basis.24 There were no models described
that included the identification and development of local resources within the community as a
means of increasing access to dental care.
Recently, many commissions, organizations, and individuals have recommended that
dental
practitioners be trained to participate in community-based dental care programs.25-27 The Pew
Health Professions Commission recommended that the health practitioner of the year 2005:
- Be able to work with others in the community to integrate a range of services and
activities
that promote, protect and improve health;
- Be able to expand access to effective care;
- Participate in coordinated care in new health care settings; and
- Participate in the delivery of care to diverse segments of the population in community-based settings.28,29
Some of the problems faced by people with special needs living in community settings were brought to the attention of the authors a decade ago because of a severe problem in rural northern California. Case managers in agencies for people with disabilities in a number of rural northern California communities reported difficulty accessing dental care for their clients with developmental disabilities. In many counties, they were unable to find dental practitioners who were willing to accept new patients with developmental disabilities. The situation was critical, with many individuals suffering pain, infection, and loss of function.
Since that time, the authors have participated in the development of a number of community-based programs to improve oral health for people with special needs living in rural northern California. The programs have resulted in increased access to dental care and increased preventive activities in the communities where they were established.30 These efforts have been primarily directed at developing services for people with developmental disabilities living in rural communities. In recent years, however, this work has expanded to include rural and urban areas throughout California and programs for people with a variety of special needs.
This article will present lessons from the past decade of work and point out areas that still need attention in order to make oral health a priority and reality for people with special needs in California.
A Community-Based Model
Figure 1 depicts a community-based model that has been used in a number of communities to improve the oral health of people with special needs by developing and coordinating resources and systems within the community. The basic assumption in this model is that there are resources in the community that, if fully utilized, would result in an improvement in oral health. A further assumption is that these resources tend to be underutilized because of inadequate communication and coordination.
Identify Local Problems
The first step in using this community-based model is to identify the local problems. Although the basic problem, inadequate oral health, may be the same in all instances, the contributing factors may be very different. Ukiah, Calif., was the first community where the authors applied this model. In that community in 1990, there were no resources for providing dental care under general anesthesia for those individuals with severe dental problems and significant dental disease. This meant that caregivers of individuals with these problems were making long drives to San Francisco to receive this type of service. In addition, that community had few dental offices that were accepting new patients with Denti-Cal, making outpatient dental care hard to find.
In contrast to that situation, hospital resources and dental offices accepting Denti-Cal are
available in the central Los Angeles area now. However, individuals with special needs still
have a difficult time finding those sources of care and may not have adequate understanding
and information about how to prevent dental disease.
Clearly, the methodology to be applied to improving oral health of people with special
needs
in these communities is different. Without a thorough analysis of the particular issues facing
each community or region, a unique and targeted strategy cannot be developed.
To fully understand the local problems, the authors have conducted surveys of dental
professionals; interviewed physicians, social service professionals, and caregivers; and
conducted dental screening examinations. These data are of interest in that they demonstrate,
among other things, that the primary dental problem identified was poor oral hygiene. In
addition it was found that caregivers overrated the need for dental care under general
anesthesia compared to the opinions of dentists with experience working with special needs
populations.30
Identify Local Resources
The next step in the development of the community-based model is to identify local
resources. Again, each community is different. Even in the rural communities where the
authors encountered no or few dental offices willing to accept patients with Denti-Cal or to
perform hospital dental procedures, there were individual dental practitioners who were
willing to help find solutions. In addition, there were agencies for people with special needs
and hospitals that were also willing to participate in finding solutions.
The authors have worked extensively with directors, clinical resource managers, and case
managers in regional centers throughout the state. There are 21 such agencies under contract
with the state Department of Developmental Services to provide information and referral,
diagnosis and evaluation, individual program planning, and prevention activities for people
with developmental disabilities residing in their regions. They are also responsible for
community placement of people with developmental disabilities into a number of levels of
community living arrangements. Identifying agencies, such as the local regional center, that
are able to work with the dental community is key to developing a community-based solution
for improving dental health.
Community-Based Coalitions
In every community where the authors have worked, a coalition of agencies and
individuals evolved that reflects the unique community-based solution for that community. Figure 2 shows some of the entities that have been involved in these coalitions. The role of the dental school, as represented by the authors, has been to act as consultants and catalysts in bringing together the participants and in designing the model and to provide training and consultation for the dental professionals in the community. In every community, there have been dental professionals, agency personnel, administrative and professional staff at hospitals, community health and recreation centers, and caregivers who have contributed to the solutions for that community.
The reason that the coalition and cooperation between the entities just described is so
powerful is the fact that they posses different capabilities. One example is the common
situation where dentists who are willing to see people with special needs are overwhelmed by
"social" barriers. These social barriers include determining who is able to give consent for
this individual to have treatment, how to access health history information, and who to talk
to about follow-up care. However, a case manager at the local regional center may not only
know how to address these issues, but may also be willing and able to do so for the dentist if
it results in dental care being delivered to the regional center consumer.
In most of the communities where the authors have worked, the formation and
continuation
of the coalition has included the hiring of a local dental coordinator. This individual has
worked part-time for the local regional center and been responsible for coordinating many
aspects of the system. This coordinating role has been central to the success of these systems.
Dental coordinators have been dental hygienists, dental assistants, social workers, and
nurses.
Hospital Resources
In some communities, there were no resources for performing general dental care under
general anesthesia. In these communities, small grant funds were used to purchase portable
dental equipment and supplies. However, even with these purchases, systems needed to be
arranged for providing hospital dental care. The authors have acted as consultants in
negotiating with hospital administrators, internists, anesthesiologists, and hospital managerial
personnel to facilitate the introduction of dental services into the hospital environment. In
each community where hospital services have been developed, a hospital protocol was written
that details the responsibilities of everyone involved and all the steps necessary to plan and
carry out dental services in the hospital environment.
Training of Dental Professionals
Although there were dental professionals in each community willing to participate, the
authors found a need and desire for further education. The authors have either given or
arranged courses for dental professionals on subjects such as dental implications of various
special needs, the regional center system, hospital dentistry procedures, behavioral
interventions, and preventive dentistry procedures.
The authors are currently developing a system, under contract with the Redwood Coast
Regional Center, to use videoconferencing technology to provide consultation and education
to dental professionals in rural Northern California.
Ongoing Triage System
One important aspect of the community-based model is matching the person in need of
dental
care with the right resource for providing that care. The most successful models have used
the services of the dental coordinator described earlier to conduct periodic dental screening
examinations. The coordinator is then able to make referrals to local dental practitioners who
are able to care for the individual with the particular set of general health and dental
problems that were identified in the screening examination. Using this system to avoid
unsuccessful referrals has contributed greatly to the success of the model.
Outpatient Dental Care
In some communities, the availability of outpatient dental care has increased as a result of
the
implementation of the community-based system. One factor that has facilitated outpatient care
is the reduction of the "social barriers" for dental professionals discussed earlier. The use of
a dental coordinator, acting as the liaison to the coalition of agencies and individuals, allows
the dental office to concentrate on providing dental care. Another factor that has encouraged
dental professionals to accept referrals has been the education and consultation made possible
by the linkage with the dental school faculty in these systems.
Preventive Dentistry Programs
Since a major goal in each community has been to prevent dental disease and avoid the
need
for dental treatment, it was necessary to address the deficiencies in preventive practices that
were identified in the assessment phase of the systems. One common problem was the high
turnover of staff in residential care facilities as well as lack of caregiver understanding of the
causes and prevention of dental disease. It is clearly not practical for dental professionals to
provide repetitive dentistry training in community settings. The authors believed that a more
effective approach would be the development of training materials that could be used in a
pyramid training program where the manager of a residential care facility or an agency
administrator could be trained, and then subsequently train other caregivers and individuals.
A preventive dentistry training package was designed and produced. The training package
is
called "Overcoming Obstacles to Dental Health: A Training Program for Caregivers of
Individuals with Disabilities." It consists of:
- A nine-minute videotape that serves as an overview of the material and is designed to
be
viewed at the beginning and end of the training sessions as well as serve as an ongoing
reference;
- A workbook that goes into detail about each of the subjects previewed in the
videotape;
- A trainers' manual containing a set of instructions for the use of the materials; and
- A pre- and post-test of multiple-choice and true-false questions covering the subject matterin the training materials.
The training program blends dental and behavioral information and provides instructions for developing a customized plan that can be integrated into the daily routines of individuals with special needs. The training time is flexible and can range from short 45-minute overview sessions to six-hour classes.
The preventive dentistry training package has been shown to be effective in increasing caregiver knowledge about dental and behavioral information needed to implement a preventive dentistry program.31 In addition, field-testing has shown that training with these materials can increase caregiver participation in preventive dentistry procedures, increase toothbrushing activities of the individuals being served, and improve oral hygiene measures in these individuals.32 These materials are currently being used in oral disease prevention programs across the country. A Spanish-language version of the materials is due to be released in the summer of 1998.
The Future of Dental Care for People with Special Needs
Although a great deal has been accomplished using the community-based systems described above, there is still much to be done. Funding and reimbursement issues were not addressed in the discussion above. The community-based models were developed with the assumption that funding for reimbursement of dental care was fixed at the time. Indeed, the fact that these systems have gone as far as they have in increasing oral health in the communities where they have been applied is testimony to the usefulness of the model and the fact that progress can be made without increasing reimbursement. In order to develop long-term and widespread increases in oral health for people with special needs, however, further funding will be needed. Funding is needed to reimburse practitioners for the extra time and expertise required to provide dental treatment for these individuals. In addition, increased funding for coordinated community-based solutions is critical to allow replication of the community-based models described here. These systems have demonstrated that community-based coalitions, managed by a dental coordinator, can increase the effectiveness of everyone involved in improving oral health of people with special needs in the community.
It is especially worrisome that managed care reimbursement systems are being developed that do not recognize the particular difficulties of providing dental care to people with special needs. Some programs do not provide for any reimbursement for dental treatment in a hospital setting. Much of the progress in the past decade could be undone if the current level of funding were reduced.
Another area that needs continued development is making prevention of dental disease in special-needs populations a priority. There is widespread agreement that dental treatment is much less desirable than prevention of dental disease. We also know how to prevent dental disease. Therefore, it is tragic that this information is not available to many caregivers and individuals who need it. The pyramid training approach described earlier must be further developed and expanded and made available across the state.
Research must also be continued and expanded to develop "best practices" for improving dental health of people with special needs. These best practices include prevention programs, treatment methods, reimbursement systems, and further development of the community-based model. Dental schools may be the best places to conduct such research as well as to act as centers for training of predoctoral, postdoctoral, and postgraduate students.
Another challenge is the dissemination and sharing of information about methodologies for improving dental health in special-needs populations. The authors have been involved in instances where some people have dedicated themselves to improving oral health for people with special needs in that community. Unfortunately, they were not aware of other successful systems and resources and have wasted considerable energy "reinventing the wheel." It is critical that the scarce resources in this area be used wisely. This would involve efforts to devise a method for better communication and cooperation between individuals and agencies interested in this problem.
Summary
A community-based dental care delivery system has been described. This system has been used in a number of communities in California to improve oral health for people with special needs. The system includes oral health assessment, coalition building, development and networking of local resources, training of dental professionals, and utilization of preventive dentistry training materials. Challenges for the future are also indicated in order to continue to make oral health a priority and reality for people with special needs in California.
Authors
Paul Glassman BA, DDS, MA, is a professor in the Department of Dental Practice and
director of the Advanced Education Program in General Dentistry at the University of the
Pacific School of Dentistry.
Christine Ernst Miller, RDH, MHS, MA, is an assistant professor in the Department of
Dental Practice and director of Community Services at UOP School of Dentistry.
References
1. Glassman P, Introduction to Special Patients. Course syllabus for special patients course.
University of the Pacific School of Dentistry, 1998, p 1.
2. Change and Continuity in Health Care in the United States: a Position Paper on Access,
Health Care Financing, and Reform, American Dental Association, 1993.
3. Minihan PM and Dean DH, Meeting the needs for health services of persons with mental
retardation living in the community. AJPH 80:1043-8, 1990.
4. Schor EL, Smalky KA and Neff JM, Primary care of previously institutionalized retarded
children. Pediatrics 67:536-40, 1981.
5. McDonald EP, Medical needs of severely developmentally disabled persons residing in the
community. Am J Ment Defic 90:171-6, 1985.
6. Ziring PR, Kastner T et al, Provision of health care for persons with developmental
disabilities living in the community. JAMA 260:1439-44, 1988.
7. Statement of the Coalition for Oral Health. J Dent Educ 57:273-81, 1993.
8. Dane JN, The Missouri Elks Mobile Dental Program -- dental care for developmentally
disabled persons. J Public Health Dent 50:42-7, 1990.
9. Preest M and Gelber S. Dental health and treatment of a group of physically handicapped
adults. Community Health 9:29-34, 1977.
10. Ferguson FS, Kamen P et al, Dental fellowships in developmental disabilities help
broaden care of the disabled. NY State Dent J 58(9):55-8, 1992.
11. Wilson KI, Treatment accessibility for physically and mentally handicapped people -- a
review of the literature. Comm Dent Health 9:187-92, 1992.
12. Hill EG, Health Care in Rural California: The 1990-91 budget. From Perspectives and
Issues, Reports of the Legislative Analyst. Legislative Analyst's Office, Sacramento Calif,
1990.
13. Marinelli RD, Ferguson FS et al, An undergraduate program providing care for children
with disabilities. Spec Care Dentist 11(3):110-2, 1991.
14. Strayer MS, A description of dental public health programs for the elderly. J Public
Health Dent 52(2):83-7, 1993.
15. Dane, op cit.
16. Krust K and Schuchman L, Out-of-office dentistry: an alternative delivery system. Spec
Care Dentist 11(5)189-193, 1991.
17. Rogers J, Grower R and Supino P, Participant evaluation and cost of a community-based
health promotion program for elders. Public Health Reports 107(4):417-26, 1992.
18. Ireys HT and Nelson RP, New federal policy for children with special health needs:
implications for pediatricians. Pediatrics 90:321-7, 1992.
19. Davidson PW and Fifield MG, Quality assurance and impact measurement of university
affiliated programs. Ment Retard 30(4):205-13, 1992.
20. Capilouto E, Access to appropriate dental care. Curr Opin Dent 1(3):316-21,
1991.
21. Nielsen-Thompson N, Access problems and solutions: ramifications for dental hygiene
research. Dental Hygiene 1:34-37, 1988.
22. Gotowka TD, Johnson SJ and Gotowka CJ, Costs of providing dental services to adult
mentally retarded: a preliminary report. AJPH 11:1246-50, 1982.
23. Gibson GB and Swanson AE, Developing an undergraduate hospital dentistry program. J
Dent Educ 55(11):738-42, 1991.
24. Burtner AP and Dicks, JL, Providing oral health care to individuals with severe
disabilities residing in the community: Alternative care delivery systems. Spec Care Dent
14(5):188-93,1994.
25. Garrison R, Traditional patient care model response. J Dent Educ 5:343-5, 1993.
26. Woolfolk M, The social responsibility model. J Dent Educ 5:346-9, 1993.
27. Gershen J, Response to the social responsibility model: the convergence of curriculum
and health policy. J Dent Educ 57:350-2, 1993.
28. Shugars DA, O'Neil EH and Bader JD, eds, Healthy America: Practitioners for 2005, an
Agenda for Action for U.S. Health Professional Schools. The Pew Health Professions
Commission, Durham, NC, 1991.
29. O'Neil EH, Health Professions Education for the Future: Schools in Service to the
Nation. Pew Health Professions Commission, San Francisco, 1993.
30. Glassman P, Miller C and Lechowick J, A dental school's role in developing a rural,
community-based care delivery system for individuals with developmental disabilities. J Spec
Care Dent 16(5):188-93, 1996.
31. Glassman P, Miller C et al, A preventive dentistry training program for persons with
disabilities residing in community residential facilities. Special Care Dent 14(4):137-43,
1994.
32. Miller C, Glassman P and Wozniak T, The effect of a preventive dentistry training
program for caregivers of persons with developmental disabilities residing in community
facilities on caregiver and client behavior and client oral hygiene. Submitted for publication.
To request copies of this article, please contact/Paul Glassman BA, DDS, MA, UOP School
of Dentistry, 2155 Webster St., San Francisco, CA 94115.
