We conducted this study to evaluate access and identify barriers to dental care for children with special needs in Alabama from their parents’ perspectives.

	METHODS

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We obtained our study sample from a database provided by Children’s Rehabilitation Services, or CRS, of Alabama. We limited the sample to parents of children aged 3 to 13 years who had one or more of the following diagnoses: cleft lip and/or palate or other craniofacial disorders; epilepsy/seizure disorders; spina bifida; and cerebral palsy, or CP.

We adapted the survey questionnaire, in part, from the Consumer Assessment of Health Plans Survey.⁹ We pretested the questionnaire among 20 parents and care-givers whose names we obtained from the CRS database. We asked the parents about their children’s access to dental care and use of dental health services, as well as whether their children were getting needed dental care. The institutional review board at the University of Alabama at Birmingham approved the study on Sept. 21, 1999.

We mailed a questionnaire and cover letter to each of the 2,057 parents of children in the database who met the study inclusion criteria. An initial response rate of 21 percent was achieved. We mailed the questionnaire and cover letter to all nonrespondents again, and the overall response rate was 38 percent (N = 714).

We conducted univariate and multivariate analyses using the GENMOD procedure from the SAS/STAT (SAS Institute, Cary, N.C.) software. We used odds ratios, or OR, and corresponding 95 percent confidence intervals from logistic models to estimate the association between the outcomes of interest and hypothesized explanatory variables.

	RESULTS

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Eighty-seven percent of the respondents said their children had some form of dental insurance; 64 percent of these children had Medicaid, 29 percent had private insurance, and 7 percent had CRS insurance. The most commonly reported disability was CP (37 percent) followed closely by epilepsy/seizure disorders (34 percent) and cleft lip and/or palate (24 percent).

About 85 percent of the parents reported that their children received routine dental care. Nearly 73 percent of these children had a dentist contact in the past year, 26 percent had a dentist contact once a year, and 74 percent had a dentist contact two or more times per year. The median age at first routine dental visit was 3 years. About 81 percent of children had their first routine dental visit before 6 years of age. Children who received routine dental care were more likely to be older than their peers who did not (² = 32.2₁, P < .0001), which could be explained by their having had more time to receive routine dental care.

The remaining 15 percent of the parents said that their children did not receive routine dental care. The reason they cited most (33.6 percent) was that the provider was not willing to treat children with disabilities (Table 1). Approximately equal numbers of respondents cited that their health insurance was not accepted by the dentists and that they were overwhelmed with other health care problems as why their children did not obtain routine dental care (20.6 percent and 19.6 percent, respectively). A total of 41.1 percent of respondents listed other reasons—lack of transportation, lack of insurance and children with severe behavioral problems—for their children’s not receiving routine dental care.

Overall, 35 percent of the respondents reported having problems finding dentists who were willing to treat children with disabilities or who were willing to accept the children’s health insurance. Significant barriers to dental care included the children’s having Medicaid coverage, CP or poor oral health, as well as dentists’ lack of knowledge about and training in the care of children with disabilities (Table 2).

– dentists were scheduled up to six months in advance;

– the wait time at the office was too long—approximately 50 percent of the parents said they "always" had to wait more than 15 minutes at the dental office, while other parents said they had to wait up to several hours, which caused a loss of a whole day from work or school;

– dentists tended to assign a certain day in a month to see Medicaid patients, which led to increased wait time at the office;

– the distance to travel was too far (of these respondents, most were unable to locate a local dentist that was willing to see their children, and nearly 25 percent of these parents reported traveling at least 80 miles round trip);

– there was a need to make long-distance phone calls to schedule appointments.

As a result of the difficulties encountered in getting the dental care needed, some parents opted to seek dental care on an urgent rather than preventive basis.

	DISCUSSION

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About 85 percent of respondents reported that their children received routine dental care. However, 35 percent reported having difficulty seeking dental care for their children. Significant barriers to dental care included the children’s being insured by Medicaid insurance or having poor oral health or a severe disability such as CP or epilepsy/seizure disorders, as well as dentists’ lack of knowledge and training.

A primary limitation of our study was the overall response rate of 38 percent after the second mailing. This is somewhat lower than the response rate of the 1989 Finger and Jedrychowski⁴ study that had a 55 percent response. It is, however, considered to be in the normal range for surveys. Because of the lack of demographic information for those who did not respond, it was hard for us to estimate the magnitude of the selection bias. We do, however, think that the difficulty in accessing dental care is somewhat underestimated. We would expect those who responded to our survey to be motivated to seek dental care and overcome the problems associated with finding care.

Another study limitation was that the findings were based on the perceptions of responding parents rather than on objective patient data. Parents’ perceptions on access to dental care, however, contributed greatly to our knowledge about and understanding of the various known and unknown barriers to dental care.

In this study, the presence or absence of dental insurance did not appear to influence the children’s use of dental services and access to dental care. Our results differed from those of other studies in this regard, which found a significant association between being uninsured and having problems accessing dental care.^3,4,10,11 The fact that there was only a small percentage of uninsured children in our study (13 percent) may be one reason for this disparity. Another explanation may be that the uninsured children’s parents paid for dental services, which may have made use of dental services somewhat less problematic.

Parents of children with Medicaid insurance were two times (OR = 2.1, P < .0001) more likely to have problems finding dentists to treat their children than were those whose children had private insurance. This finding, which agrees with findings from other studies, may be related to providers’ nonparticipation due to low Medicaid reimbursement fees.^1,4,11 Only 16 percent of dentists in 35 states actively participated in the Medicaid program in 1999.¹² In fiscal year 1998, Medicaid expended only $11.75 per enrolled child per month in Alabama.¹³ One study determined that $17 to $18 per child per month is a necessary expenditure for dental care; a similar study suggested that $21.35 per child per month must be expended to meet the dental care needs of covered children.⁶

Parents of children with Medicaid insurance were two times more likely to have problems finding dentists to treat their children than were those whose children had private insurance.

Efforts to improve access to dental care for the Medicaid population should focus on increasing the number of participating dental providers available to these children. This could be accomplished in several ways. One is by increasing Medicaid reimbursement rates to a level that approaches private insurance rates. In one study, dentists suggested that average increases of 50 percent for an initial examination and 131 percent for extractions were necessary to increase providers’ participation.¹³ Indeed, since October 2000, Alabama Medicaid has increased its reimbursement rates to a level that approaches those of Blue Cross and Blue Shield of Alabama. This increase in reimbursement fees has resulted in there being more than 140 new Medicaid providers in Alabama, which brings the total number of Medicaid providers to 507.¹⁴

Another way to increase the number of participating dental providers participating in Medicaid is to pay a separate fee for patients whom some dentists might perceive as difficult or as requiring extra time to treat. A third way is to differentiate between children without disabilities and children with severe disabilities in the fee-for-service charge. Providers may be willing to treat Medicaid patients if the fees are sufficient enough to eliminate or minimize any financial losses associated with seeing patients with special needs.

Dentists who lacked knowledge about and training in the care of children with special needs were four times and three times (OR = 3.8, and OR = 2.6, P = .0001), respectively, more likely not to see these patients than were those who had the knowledge about and training in the care of patients with special needs, further complicating access to dental care for this population. More than 50 percent of U.S. and Canadian dental schools offered fewer than five hours in didactic instructions, and 73 percent devoted less than 5 percent of clinical time to the dental care of children with disabilities.¹⁵ These percentages were lower than the results of a similar survey reported in 1993.¹⁶ In a 1998 study, Necrosi¹⁷ found that about 56 percent of dentists felt they were trained adequately in dental school to treat people with disabilities, and 80 percent said they wanted more continuing education courses addressing the treatment of these patients to be offered. To acquire confidence and competence, dental students may benefit from having some clinical experience treating patients with disabilities, while general practitioners and specialists need advanced and continuing education courses.

Three times as many parents of children with poor oral health (OR = 2.6, P = .0001) had difficulty finding dentists to treat their children, compared with parents of children with good oral health. Children with special needs who have poor dental health generally require more time and effort to be treated. Dentists need training in using behavior modification techniques such as restraints, sedation and general anesthesia to meet their needs. Moreover, poor dental health coupled with certain disorders may increase the practitioners’ medical and liability risks. These factors together may affect the provider’s decision to accept or reject treating children with special needs who have poor oral health.

The disability most commonly related to having problems accessing dental care was CP (OR = 2.1, P = .0028). This finding, which agrees with that of another study, may be because treating patients with CP may require using more behavior modification techniques and can pose higher liability and medical risks to providers.⁴ Practitioners’ reservations about the treatment of patients with disabilities may be related to several factors:

– lack of knowledge about and training in the care of children with disabilities (16.1 percent);

– worries about the length of appointments and disruptions of the office routine (31.5 percent);

– fear of medical emergencies (44.4 percent) and liability risks (33.3 percent);

– worries about the financial loss associated with treating this group of people (30 percent).¹⁷

The disability associated with the fewest perceived problems in access to care was cleft lip and/or palate.

The disability associated with the fewest perceived problems in access to care was cleft lip and/or palate (OR = 0.3, P = .0022). The presence of CRS-supported multidisciplinary teams, including a dentist, to treat patients with cleft lip and/or palate, may explain why the parents of these children had fewer access problems. In addition, most of these patients had physical and psychological behaviors that were similar to children without special needs.

The lack of dental visits is used as an indicator of unmet dental health needs.⁶ Approximately 27 percent of the surveyed parents in our study reported that their children received no dental care in the past 12 months. Unfortunately, no comparable age-specific figure is available for the population of Alabama children without disabilities. We do know that about 19 percent of children with Medicaid in Alabama received dental services in fiscal year 1998.¹⁸ Access to dental services for children with Medicaid was limited to 9 percent nationally and to 14 percent in the East South Central region.¹⁸ These data show a somewhat higher percentage of dental services utilization among all children with Medicaid younger than 21 years of age in Alabama. According to these figures, we believe that the CRS population of children with disabilities may have better access to dental care than do children without disabilities who have Medicaid. Moreover, the percentage of parents who reported having problems finding dentists to treat their children (35 percent) was lower than that reported in other studies (40–75 percent).^4,7,19 Parents’ increased awareness of the importance of dental health to systemic health, as well as better training and knowledge of dentists through continuing education courses and hands-on experience, may contribute to parents’ having improved access to dentists to treat their child.

The children in this study received their first routine dental visits later than the age recommended by American Academy of Pediatric Dentistry—6 to 12 months of age.²⁰ Moreover, 10 percent of the children fell short of the percentage (90 percent) recommended by Healthy People 2000 for the initial routine dental visit.⁶ Establishing routine dental care early in life is essential to avoid dental disease and to combat existing disease before it escalates.

The impact of wait time to get a dental appointment or to see the dentist is a barrier to access. The parents who reported having difficulty scheduling dental appointments had to wait three to six months before they could get an appointment because dentists were booked. This wait time for children with special needs who need extra dental care can cause existing conditions to worsen, making the conditions more difficult to treat later. Efforts should be made to schedule appointments for children with special needs as soon as possible.

About one-half of the respondents who had problems scheduling appointments had to wait in the office from 15 minutes to several hours to see the dentist. Most of these parents traveled long distances to receive dental care. Their children tended to become easily fatigued, anxious and out of control as time passed, which resulted in children who were less willing to cooperate, angry parents and disruption of the dental office. Providers could ameliorate the situation by reducing their in-office waiting time. Moreover, a long wait time can lead to the loss of a whole workday and a financial loss to the parents.

	CONCLUSION

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Dental care is part of a person’s total health, and it needs to be a standard component of comprehensive medical care for children with special needs. A strategy to address financial and nonfinancial barriers is required for children with special needs so they can have access to dental care. The recent increase in the Medicaid reimbursement rate in Alabama has increased the number of participating providers.¹⁴ As procedures are paid for by Medicaid at rates closer to fees charged to non-Medicaid patients, participation by the dentists should increase. In addition, parents and caregivers should be educated about prevention of oral disease in children at an early age. Dentists and physicians should be better trained to treat children with special needs, so they can enhance their knowledge, skills and confidence in treating these children.