Disabilities

Dental Care for Individuals With Developmental Disabilities Is Expensive, but Needed

H. Barry Waldman, DDS, MPH, PhD, and Steven P. Perlman, DDS, MScD

Copyright 2002 Journal of the California Dental Association.

About the Authors:

H. Barry Waldman, DDS, MPH, PhD, is a professor of dental health services in the Department of General Dentistry at the School of Dental Medicine, the State University of New York at Stony Brook.

Steven P. Perlman, DDS, MScD, is the global clinical director of Special Olympics, Special Smiles, and is an associate clinical professor of pediatric dentistry at the Boston University Goldman School of Dental Medicine

More than $35 billion in additional lifetime costs will be expended for all children in the United States born with mental retardation in 1998 alone. The figure is $4.7 billion for California children. These numbers include neither the costs for individuals with other developmental disabilities, nor the costs for dental services. Despite the findings that individuals with mental retardation have more untreated dental needs than individuals in the general population, most dental students and many practitioners have limited experience in providing care for patients with special needs. The significant additional general costs for the care of people with mental retardation and other developmental disabilities are a reality, but the dental profession must not lose sight of the need for its members to provide services for these individuals.

etween 6.2 and 7.5 million Americans of all ages, or 3 percent of the general population, experience mental retardation. Nearly 26 million, or 1 in 10 families in the United States, are directly affected by a person with mental retardation at some point in their lifetime."¹

"Estimates of the per-person lifetime costs of specific developmental disabilities include $797,592 for mental retardation."²

The cost of raising a child continues to rise and is highest for families living in cities in the Western United States. The Department of Agriculture estimates that a middle-income ($36,900 to $62,000 a year before taxes) two-parent family in the urban West will spend $173,880 to raise a child born in 1999 to age 18.³ There are significant additional costs involved in raising a child with mental retardation.

In 1998, 44,500 children with mental retardation were born in the United States (including 1,681 children with Down syndrome⁴), 5,900 of those in California. It is estimated that $35.5 billion in additional lifetime costs will be expended for all U.S. children with mental retardation born in 1998, $4.7 billion for those born in California^a (Table 1).² The estimated additional lifetime costs for children born with mental retardation in 1998 are more than $1 billion in Florida, Georgia, Illinois, Michigan, New Jersey, North Carolina, Ohio, and Pennsylvania; more than $2 billion in New York; and more than $ 3 billion in Texas (Table 2).

In addition, estimates of additional per-person lifetime costs for other developmental disabilities include $706,704 for cerebral palsy, $275,717 for hearing impairment, and $386,074 for vision impairment.² Based upon these approximations, nationally, there would be $11 billion in additional lifetime costs for children born in 1998 with these three disabilities, $1.5 billion for those in California (Table 1).

These figures do not include the costs of care for children born with other disabilities in the same year, including:

* 4,639 babies born with heart malformations;

* 838 babies born with spina bifida/meningocele;

* 3,127 babies born with cleft lip/palate;

* 3,258 babies born with polydactyly, syndactyly/adactyly; and

* 2,178 babies born with clubfoot.⁴

Dental Costs Not Included

Oral health problems, visual impairment, and mental health disorders are among some of the more significant secondary health conditions that contribute to the compounding difficulties faced by individuals with mental retardation.⁵ But because specific costs of dental services for individuals with mental retardation are unavailable, estimates of additional lifetime costs do not include oral health services (Personal communication, M. Yeargin-Allsopp, National Center on Birth Defects and Developmental Disabilities, September 2001)

Significant Oral Disease

"Children and adults with mental retardation have more untreated caries than the general population."^5,6

"(Studies on oral health indicate) prevalence estimates of gingivitis in the range of 60 percent to 97 percent among individuals with mental retardation with estimates of 28 percent to 75 percent in the general population."^5-7

National and international studies do not provide definitive data on the prevalence of dental conditions among those with mental retardation.^8,9 An extensive series of local studies do indicate that, as in the general population, two of the most common oral heath problems of children and adults with mental retardation are dental caries and periodontal disease. For example:

* Studies of youngsters and adults living in institutions and in local communities report decayed, missing and filled teeth scores close to those in the general population.^6,10,11 However,

- The proportion of missing teeth to filled teeth was much higher among individuals with mental retardation than in the general population, suggesting that extraction, rather than restoration, is the primary treatment of dental problems among individuals with mental retardation.¹⁰

- Youngsters with severe mental retardation had fewer dental caries than children with mild or moderate mental retardation.^8,12,13

* Specific studies of athletes at Special Olympic events report that 6- to 8-year-old children with mental retardation had similar patterns of dental caries as children of the same age in the general population. But overall prevalence of untreated caries and gingivitis in athletes was greater than in the general population.^b14-16

* Overall prevalence of untreated dental decay among Special Olympic athletes of all ages is 24.6 percent, compared with prevalence estimates in the general population (20 percent among school-aged children and 14.2 percent among working adults).^16-19

* Individuals with Down syndrome are more susceptible to gingivitis and periodontal disease because they are thought to have underlying abnormal immunological responses.²⁰

* The increased prevalence of oral health problems among individuals with mental retardation may be related to their oral habits -- poor oral hygiene (i.e., limited brushing) which, in the cases of moderate or severe mental retardation, may be associated with impaired physical coordination.¹⁰

Much of the variation in oral health status stems from where the individuals with mental retardation reside (i.e., the availability of service in a large state institution and the need to secure services from community practitioners) and the availability of community practitioners to provide needed services.²¹

Mainstreaming and Community Residences

During the past 30 years, the circumstances have changed for one large group of individuals with disabilities -- the hundreds of thousands of people with mental retardation/developmental disabilities who once were housed in large state institutions and psychiatric institutions. From 75 percent to more than 90 percent of these people now reside within local communities.²²

Changing social policies, favorable legislation for people with disabilities, and class-action legal decisions, which delineated the rights of individuals with mental retardation, have led to deinstitutionalization (i.e., establishment of community-oriented group residences and enhanced personal family residential settings) and closure of many state-run large facilities.

The success of community-based programs depends upon the availability of support services, particularly by private practitioners who are convenient and accessible to the deinstitutionalized individual, and trained and willing to provide the needed care. The reality is that, "for some individuals with disabilities who reside in the community, comprehensive oral health care is inaccessible."²³ The perceptions of staff members of community residences are that residents receive poorer quality health care, with particular emphasis on the limitation of dental services.²⁴ In the past, large state institutions (to some degree) offered a wide range of in-house health services provided by medical and dental staff employees. Most of the current community residential facilities, however, are too small in size to provide intramural services. As a consequence, the monitoring and delivery of health care can be difficult when the services and health records are disseminated among multiple providers and locations. And most importantly, the residents in the community facilities are dependent upon local practitioners for health services.

Producing New Dentists

In 1993, the Academy of Dentistry for Persons with Disabilities surveyed all U.S. and Canadian dental schools to determine the amount of curriculum time devoted to the care of patients with special needs. The average number of lecture hours devoted to the dental management of individuals with disabilities in a typical four-year curriculum was 12.9 hours, and 14 schools reported fewer than five hours of time. The average clinical instruction per student was 17.5 hours. Thirty-two schools reported fewer than 10 hours in the curriculum (or five patient appointments).²⁵

In 1999, a second study showed an actual decrease in the time spent by students in the didactic and clinical phases of care for patients with special needs. Fifty-three percent of dental schools reported that they provided fewer than five hours of didactic training in special care dentistry. Clinical instruction in the care of patients with special needs constituted 0 percent to 5 percent of a predoctoral student’s time in 73 percent of the responding dental schools.^26,27

"The results of these two studies clearly indicate that, during their predoctoral education, current dental school graduates do not gain the necessary expertise to treat the special-needs patient."^26,28

The procedures used for the treatment of patients with special needs usually do not differ from those used for the general population, except that certain modifications of these procedures may be required. The most important aspects of student clinical practice involving patients with disabilities are learning to apply previously learned procedures to the particular situations. Graduates who haven’t had sufficient number and variety of patients with special needs during their formal years of training, "will not feel confident inviting these individuals into their private practices."²⁶ Should recent graduates join ongoing practices, they still may not gain sufficient experience since most private practices exclude special need patients from their patient pool. (The reality for this exclusion is that dentists who are willing to treat people with disabilities often are inundated with referrals from colleagues who are not so inclined.²⁶)

Barriers to Care

Reports suggest that individuals with mental retardation have four times more preventable mortality than individuals in the general population -- suggesting that care may alter the health trajectories of individuals with mental retardation.²⁹ But there are real obstacles. For example:

* Managed care and fee schedules: As with the general population, many individuals with mental retardation who receive Medicaid have been transferred into managed care plans. The combining emphasis, however, on financial "bottom lines" and closed panels may not provide the additional necessary resources for people with special needs or the coordination of providers experienced with mental retardation.^30,31

* Worth of individuals: Many writers have reported that health providers have negative attitudes and stereotyped ideas about individuals with mental retardation and their ability to maintain their health status, as well as "value judgments about the worth of individuals with mental retardation … suggest(ing) that (providers) with negative attitudes may withhold treatment."³² (Unfortunately, there is the added reality that other patients in the waiting room may feel uncomfortable sharing waiting rooms with some of these patients.³³)

* Communication: Individuals with mental retardation may be reluctant to seek health services because they are frightened of new surroundings and treatment procedures -- in particular dental visits. Premedication, sedation, use of physical or medical restraints, general anesthesia, and hospital operating room procedures may be necessary for behavioral management difficulties.³⁴

* Physical and behavioral impairment: Physical and behavioral difficulties associated with comorbid neurological conditions (e.g., individuals with athetoid cerebral palsy have increased involuntary movement during stressful situations).⁵

Care for People With Mental Retardation Is Expensive

Whether it is care in general, or dental care in particular, services for people with mental retardation may be expensive and complicated by the inadequacy of third-party reimbursement and the difficulties of providing care to patients with mental retardation.³⁵

While the significant general costs for the care of people with mental retardation may seem overwhelming, dentistry must not lose sight of the need for dental profession to provide necessary services for these individuals who increasingly reside in local communities. Or, as recently stated in the Journal of the American Dental Association,

"If we do not take a major step toward improving access to care, we will soon be forced to do this on someone else’s terms."³

Notes

a. Per-person lifetime cost estimates are based on a cost-of-illness approach that measures the value of all resources used or lost because of a disability (excluding home care costs). Resources include physician office services, prescription medications, hospital inpatient services, therapy and rehabilitation services, long-term care services, special education services, illness, and premature mortality.²

b. Special Olympic athletes are not a random sample of the population with mental retardation. They are a "convenience" sample of individuals who may be at a higher I.Q. level, have more caregiver support, and may receive more services. As a consequence, the results from these oral screenings (without radiographs) may understate the oral conditions of the general population of individuals with mental retardation.

References

1. President’s Committee on Mental Retardation, Mission statement. Web site: http://www.acf.dhhs.gov/programs/pcmr/mission.htm accessed Sept. 24, 2001.

2. Research Triangle Institute, The Cost of Developmental Disabilities. Research Triangle Institute, Research Triangle Park, NC, 2000; in, National Center for Health Statistics. Estimated lifetime costs for children born with birth defects in 1998. Web site: ftp://ftp.cdc.gov/pub/health_statistics/NCHS/Datasets/state_healthprofiles/child_health/ accessed Aug. 24, 2001.

3. US Department of Agriculture, Expenditures on Children by Families. Government Printing Office, Washington, DC, 2001; in Oregon State University Extension and Experiment Station Communication. News & Features, Children – costs of raising a child continue to rise. Web site: http://eesc.orst.edu/agcomwebfile/news/economics/childcosts.html accessed Sept. 23, 2001.

4. National Center for Health Statistics, Fast Facts A to Z. Birth defects. Web site: http://www.cdc.gov/nchs/fastats/bdefects.htm accessed Sept. 24, 2001.

5. Horwitz SM, Kerker BD, et al, The Health Status and Needs of Individuals with Mental Retardation. Special Olympics Inc, Washington, DC, 2001. (The publication provides an in-depth review of the literature related to the health needs of individuals with mental retardation.)

6. Costello EJ, The dental health status of mentally and physically handicapped children and adults in the Galway community of the Western Health Board. J Irish Dent Assoc 36:99-101, 1990.

7. Cumella S, Ransord N, et al, Needs for oral care among people with intellectual disability not in contact with community dental serves. J Intell Dis Res 44:45-52, 2000.

8. Shapira J, Efrat J, et al, Dental health profile of a population with mental retardation in Israel. Spec Care Dent 18:149-55, 1998.

9. Waldman HB, Perlman SP, Swerdloff M, Use of pediatric dental services in the 1990s: some continuing difficulties. J Dent Child 67:59-63, 2000.

10. Nowak AJ, Dental disease in handicapped persons. Spec Care Dent 4:66-9, 1984.

11. Gizani S, Declerck D, et al, Oral health condition of 12-year old handicapped children in Flanders (Belgium). Comm Dent Oral Epid 25:352-7, 1997.

12. Gabre P, Gahnberg L, Dental health status of mentally retarded adults with various living arrangements. Spec Care Dent 14:203-7, 1994.

13. Tesini DA, An annotated review of literature of dental caries and periodontal disease in mental retarded individuals. Spec Care Dent 1:75-87, 1981.

14. Feldman CA, Giniger M, et al, Special Olympics, Special Smiles: assessing the feasibility of epidemiological data collection. J Am Dent Assoc 128:1687-96, 1997.

15. Special Olympics Inc, Special Olympics administrative data derived from 34 Special Smiles events during 2000. Special Olympics Inc, Washington, DC, (unpublished data).

16. White JA, Beltran ED, et al, Oral health status of special athletes in the San Francisco Bay Area. Can Dent Assoc J 26:347-53, 1998.

17. Kaste L, Selwitz R, et al, Coronal caries in the primary and permanent dentition of children and adolescents. United States, 1988-1991. J Dent Res 75(2, special issue):631-41, 1996.

18. Winn D, Brunelle J, et al, Coronal and root caries in the dentition of adults in he United States, 1988-1991. J Dent Res 75(2, special issue):642-51, 1996.

19. Brown LJ, Lazar V, Demand -- side trends. J Am Dent Assoc 129:1685-91, 1998.

20. Nespoli L, Burgio GR, et al, Immunological features of Down’s Syndrome: a review. J Intell Dis Res 37:543-51, 1993.

21. Waldman HB, Perlman SP, Swerdloff M, Orthodontics and the population with special needs. Am J Ortho Dentofac Orthoped 118:14-7, 2000.

22. Anderson LL, Lakin C, et al, State institutions: thirty years of depopulation and closure. Ment Retard 67:413-7, 2000.

23. Burtner AP, Dicks JL, Providing oral health care to individuals with severe disabilities residing in the community: alternative care delivery systems. Spec Care Dent 14:188-93, 1994.

24. Conroy J, Eight years later -- the lives of people who moved from institutions to communities in California: a report to the State of California. The Center on Outcome Analysis, Sacramento, CA, 2001.

25. Fenton SJ, Survey of training in the treatment of persons with disabilities. InterFace 9:1,4, 1993.

26. Fenton SJ, People with disabilities need more than lip service (editorial). Spec Care Dent 19:198-9, 1999.

27. Romer M, Dougherty N, Amores-Lafleur E, Predoctoral education in special care dentistry: paving the way to better access. J Dent Child 66:132-5, 1999.

28. Waldman HB, Perlman, SP, Preparing to meet the dental needs of individuals with disabilities. J Dent Educ 66:82-4, 2002.

29. Dupon A, Mortenson PB, Available death in a cohort of severely mentally retarded. In Fraser, WI, ed, Key Issues in Mental Retardation Research. Routledge, London, 1990, pp 45-63.

30. Walsh KK, Kastner T, Quality of health care for people with developmental disabilities: the challenge of managed care. Ment Retard 37:1-15, 1999.

31. Waldman HB, Perlman SP, Swerdloff M, Managed (not to) care: Medicaid and children with disabilities J Dent Child 66:59-65, 1999.

32. Garrard SD, Health services for mentally retarded people in community residences: problems and questions. Am J Pub Health 72:1226-8, 1982.

33. Waldman HB, Perlman SP, Children with both mental retardation and mental illness live in our communities and need dental care. J Dent Child 68:360-5, 2001.

34. Waldman HB, Swerdloff M, Perlman SP, Culture diversity: caring for minority children with mental retardation and other disabilities. J Dent Child 68:280-5, 2001.

35. Waldman HB, Perlman SP, A quarter of a million dollars to raise a child born in 2000; and if the child is disabled … . J Dent Child 68:366-9, 2001.

36. Bernick SM, Improving dental access (letter). J Am Dent Assoc 137:1053-4, 2001.

To request a printed copy of this article, please contact/H. Barry Waldman, DDS, MPH, PhD, School of Dental Medicine, SUNY, Stony Brook, NY 11794-8706 or hwaldman@notes.cc.sunysb.edu.

Table 2. Estimated lifetime costs (in millions) for children with mental retardation born in 1998 by state²