2001 JOURNAL OF THE CALIFORNIA DENTAL ASSOCIATION
Feature Story
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Retardation

Developmental Disabilities and Understanding the Needs of Patients With Mental Retardation and Down Syndrome

Stanley R. Surabian, DDS, JD

Copyright 2001 Journal of the California Dental Association.



This article provides the dentist with a background on developmental disabilities, services, and issues related to statutory and regulatory requirements, with a focus on mental retardation and Down syndrome. Down syndrome has mental retardation as a component, yet requires additional emphasis because of its prevalence and associated craniofacial manifestations. Also discussed are treatment considerations.

On Andrew’s big night, he sat on stage in his high school gym and waited as the reigning homecoming royalty silently read a scroll bearing the names of their successors. Each year, seniors select five boys and five girls as candidates for king and queen of the school. The entire student body then chooses the winners by secret ballot.

The couple wove tantalizingly among 10 would-be monarchs and finally grabbed Andrew and the next queen. Andrew, a 17-year-old senior, is no star quarterback. To his 450 classmates, none of that mattered. Neither did his Down syndrome.

Tyler, a classmate, said, "I don’t think it’s ever been that loud in that gym before. .... I tried to keep it in around all my friends. But when he got up there with the crown, I just couldn’t hold it in anymore. ... A few tears had to roll down."

"I wasn’t expecting it," said Andrew, his blue eyes sparkling. "I thought I’d be on the bottom." The night Andrew was crowned, Hannah was chosen as homecoming queen. "I saw it was Andrew, and I was ready to give him a big hug. So many times kids with disabilities don’t get attention like that. It’s attention they deserve as much as anybody else," she said.1

 

The purpose of this article is to provide the dentist with a background on developmental disabilities, services, and issues related to statutory and regulatory requirements. The article then focuses on mental retardation and Down syndrome. Down syndrome has mental retardation as a component, yet requires additional emphasis because of its prevalence and associated craniofacial manifestations. Treatment considerations are included, and this article emphasizes the need to establish referral patterns to those dentists who utilize the hospital operating room as an alternative setting to provide necessary treatment. The alternative creates an access-to-care problem.

Background

The general dentist with hospital privileges provides services for segments of the population traditionally underserved in health care. Services in the hospital environment are provided to patients with special care considerations such as those with developmental disabilities, those with medically compromising conditions, and young children who present special behavior-management problems. In some cases, an overlap may occur with all of these situations presenting in the same patient.

The recently published document Oral Health in America: A Report of the Surgeon General concludes with a framework for action to remove known barriers between people and oral health service:

"Individuals whose health is physically, mentally, and emotionally compromised need comprehensive integrated care. ... Given the wide variability among groups with disabilities,… more in-depth assessment and analysis of the determinants of oral health status, access to care, and the role of oral health in the overall quality of life and life expectancy are needed."2

Access to dental care is an issue of increasing importance. Dental school special care programs or advanced education programs in a hospital-based general practice residency or in general dentistry are important training experiences for dentists who wish to provide dentistry to patients with special needs.3 All people with developmental disabilities, qualifying by California Department of Developmental Services standards, are eligible for state assistance. Attitudes within the dental team, financial considerations, self-image problems, and medical or physical conditions limit access to care.4 Modernly, the Americans With Disabilities Act of 1990 has addressed several issues and provides the federal definition of disability under the ADA:

"(2) Disability. The term disability means, with respect to an individual

(A) a physical or mental impairment that substantially limits one or more of the major life activities of an individual;

(B) a record of such an impairment; or

(C) being regarded as having such impairment."5

The ADA consists of requirements under several sections of the law, which include employment, transportation, state and local government services, public accommodations, and telecommunications. Complaints for employment discrimination may be filed with the Equal Employment Opportunity Commission and remedies include back pay and court orders to stop discrimination. Private lawsuits are limited to stopping discrimination, but not for money damages. Complaints may also be filed with the U.S. attorney general’s office. The attorney general may file lawsuits to stop discrimination, obtain money damages, and impose other penalties. This enforcement pattern is followed in other sections of the ADA. Three U.S. Supreme Court decisions have upheld the federal ADA provisions.

At the state level, a broader definition is applied to the term "disability" in California. With the recent passage of AB 2222, California has the strongest ADA law in the country. This law amended the state’s Fair Employment and Housing Act. Under AB 2222, mitigating measures do not dilute the definition of disability in California. Under federal law, a person may not meet the definition if "mitigating measures" are used to manage the disability; whereas, under California law, even if "mitigating measures" are present, that does not negate a person’s disability status. Furthermore, the ADA uses the term "substantial limits"; however, the new California law eliminates the term "substantial."6 How does this apply in a practical sense? A person with a visual impairment qualifying under the ADA with a disability, under the federal law, would not qualify if corrective lenses were worn to improve vision. In California, the mitigating circumstance would not preclude qualification simply because corrective lenses are used. Dentists and other health care workers should be aware of federal ADA requirements and the California modifications.

For purposes of this article, California law must be looked at for the specific definition of developmental disability. Recognizing that people with developmental disabilities are covered under the ADA, people with other disabilities come within the ADA definition while not qualifying with a developmental disability. In California, the Lanterman Developmental Disabilities Services Act of 1969 defines the rights of people with developmental disabilities and how services are delivered. The Department of Developmental Services promulgates Title 17 regulations to meet statutory requirements. Developmental disabilities are defined by California statute:

"The term developmental disability refers to a severe and chronic disability that is attributable to a mental or physical impairment. The disability must begin before the 18th birthday, be expected to continue indefinitely, and present a substantial disability. Also, the disability must be due to one of the following conditions:

* Mental retardation

* Epilepsy

* Cerebral palsy

* Autism

* A disabling condition closely related to mental retardation or requiring similar treatment

* A developmental disability does not include other disabling conditions that are solely physical in nature." 7

The Department of Developmental Services Client Development Evaluation Report breaks down the number of individuals with specific diagnostic categories (Table 1).8

The Department of Developmental Services’ client population numbers 140,316. Of this client base, only 3,808 individuals with developmental disabilities (2.7 percent) are in California Developmental Centers. The developmental centers provide complete dental facilities and services. Full-time dental staffs provide care to the population of each center. A total of 132,691 clients (97.3 percent) are in a home environment, private residential, or care facility. While the idea of placing patients in a developmental center often brings to mind an image of a "snake pit" environment, this is not the current situation. In this author’s opinion, having visited these centers many times, care is extraordinary; and the commitment of the care providers is vigorously monitored and regulated. Clients receive routine dental care, and recall systems are in place. Incremental dentistry facilitates completion of necessary dental care because access to care is ensured. In the center’s living areas, workers assist or provide oral hygiene care. In 1998, the Academy of Dentistry for Persons with Disabilities addressed the situation in a position paper titled "Preservation of Quality Oral Health Care Services for People with Developmental Disabilities":

"No one intends for the move to the community to result in a deterioration of an individual’s health, specifically oral health. However, that is exactly what is happening for some citizens, especially those who cannot access comprehensive oral care in their community or require special behavior management during dental procedures."9

Similarly, the surgeon general’s report recognized the access-to-care problem that comes with deinstitutionalization:

"Deinstitutionalization has resulted in highlighting the problem these individuals have regarding access to dental care as they move from childhood to adulthood. Availability of dental providers trained to serve special needs populations and limited third-party support for the delivery of complex services further complicate the issues entailed in addressing the needs of this population."3

A study of parents of children with developmental disabilities examined access-to-care issues for people with various developmental disabilities. Problems finding dental care in the community were measured. The results showed problems in access by diagnostic category expressed by percent:4

* Cerebral palsy: 60 percent;

* Mental retardation: 54.1 percent;

* Autism: 46.7 percent;

* Epilepsy: 28.6 percent; and

* Down syndrome: 23.5 percent;

The study does not measure the number of dentists willing to provide care. Unfortunately, common methods used by parents and caretakers to find care often fall short in special care situations. Component and constituent dental societies need to gather information from their membership for referral to dentists, residency or dental school programs, and hospitals providing special care dentistry. Agency and advocacy organizations are often aware of provider availability, but this information is not always updated.

Glassman and Miller have assessed the need for community-based dental delivery systems for people with special needs at the University of the Pacific, School of Dentistry, Center for Oral Health for People with Special Needs, in San Francisco.10 A system was developed with the Department of Developmental Services State Regional Centers to improve oral health for people with special needs. The ongoing program includes oral health assessment, coalition building, development and networking of local resources, training of health professionals, and utilization of preventive dentistry training materials.11 This program addresses the long-standing problem of access to dental care for people with developmental disabilities.12

The patient with a developmental disability presents no real problems in treatment in the general dental office. Modification of normal routines and procedures and patient management techniques are minimal.13 For the dentist without hospital privileges, those few patients requiring general anesthesia in an operating room are easily referred to dentists in the community offering those services. Because people with developmental disabilities may have one or more conditions that would lead to management difficulties, each patient requires individual evaluation by a dentist. Physicians typically have a minimal understanding of dental treatment considerations unless the physician has a special interest in and is routinely involved with the practices of knowledgeable dental colleagues. The oral evaluation requires a dentist’s level of assessment abilities. GPR and AEGD programs provide the level of training necessary for diagnostic evaluation of the physical status, the oral condition, and the polypharmacy considerations leading to development of a problem list and ultimately a treatment plan that considers how the process best meets the patient’s oral health care needs. Under dentist direction and supervision, the dentist and a dedicated auxiliary staff constitute the ideal team to serve best the patient’s interests.

Mental Retardation

To understand mental retardation, there must be recognition of its diagnostic features and the degrees of severity within the intellectual component of the condition.

Diagnostic Features

To have the diagnosis of mental retardation, the person must meet all the following three diagnostic criteria. Each criterion will be discussed separately:

* Significant subaverage general intellectual functioning;

* Concurrent deficits or impairments in present adaptive functioning; and

* Onset before age 18 years.14

Significant Subaverage Intellectual Functioning

The intelligence quotient (IQ or equivalent) is determined by use of one or more standardized, individual intelligence tests (Wechslar, Stanford-Binet, Kaufman Assessment). The IQ must be at an average of 70 or lower. The Wechslar IQ of 70 represents a range of 65 to 75 because the measurement error is plus or minus five. An IQ of 70 is two standard deviations below the mean. Of importance in IQ determination are such factors as sociocultural background and native language and associated situations such as handicaps in communication, motor skills, and sensory perception. The diagnosis becomes more complicated when scattered subtest scores or other factors reflecting an individual’s strengths and weakness influence the IQ scale. Diagnosis is complicated by discrepancies between the factors used in measurement. Diagnostic verbal and performance scores cannot be averaged merely to reflect the mathematical result.

History demonstrates examples of strongly believed characteristics. Identification of mental retardation or the propensity toward mental retardation was based most often on whichever prejudice was at the forefront of thought.15 Ethnicity was often categorized as a factor. When classified by Caucasians in the mid-19th century, the "Caucasian type" was the " highest functioning" in human abilities. Similarly, as reflected in a series of New York Times articles in the early 20th century, there was the concept of "feeblemindedness" and the dangers posed by "weak minds." The extrapolation is that the "feebleminded" were a public menace and morally defective, including "the insane, the socially deviant and the mentally deficient."15 By the mid-20th century, this type of belief diminished because of other factors, including the rise of ethical values of autonomy inspired by the facts revealed during the Nuremberg Trials following World War II. Society also looked at issues of racial prejudice and the lack of informed consent for medical research testing. In 1959, the public became aware that at Willowbrook State School, children with mental retardation were given hepatitis to study the detectability of the disease. In 1963, elderly people in a New York hospital were injected with live cancer cells to see if the cells survived. The infamous Tuskegee Study, 1932-1972, was a shock to the public consciousness. African-American males were studied to see the effects of end-stage syphilis. The patients were never informed that penicillin was available to cure the disease. In 1972, the study came to public awareness when all subjects were either dead or demented. The concept of biomedical ethics developed in reaction to paternalistic beliefs coaxed under the veil of beneficence -- do the best for your patient. Physicians decided what was best typically without the informed consent of the patient. Modernly, the ethical base of autonomy is in the forefront. The patient must be the decision-maker based on material information revealed by the health care provider in language the patient can understand. To consent to or refuse treatment is the patient’s decision.16

Similarly, societal endorsement of ethnic segregation and gender discrimination began to be revealed. While negative or incorrect societal attitudes are rarely erased, modernly, they are diminished in influence to the point where society as a whole takes a better direction. Knowledge, reason, and research with ethical guidelines replace dogma. The determination of "significant subaverage intellectual functioning" as one of the criteria used to determine a diagnosis of mental retardation considers not only mathematical results of standardized testing but also all factors leading to a correct diagnosis.

Concurrent Deficits or Impairments in Present Adaptive Behavior

What standard is expected? The state of California under the Welfare and Institutions Code, Section 4512, looks to the individual’s age or cultural group. Next, the deficit or impairment must be apparent in at least two of the following areas:

* Academic skills;

* Communication;

* Health;

* Home living;

* Leisure;

* Safety;

* Self care;

* Self direction;

* Social/interpersonal skills; and

* Use of community resources.7

A person’s IQ measurement tends to remain stable because it is a cognitive determination. Adaptive functioning can improve depending on the education and training available to the individual.14 The American Association on Mental Retardation has an adaptive behavior scale. Behavior scales provide a clinical assessment of several factors. Complicating factors include the presence of significant handicaps. Some factors normally considered maladaptive may actually reflect good adaptive skills based on that person’s life situation.14 One example is dependence; dependence is a feature of adaptive behavior necessary in institutional or residential care situations. Rather than being a negative factor, dependence becomes a normal adaptive feature in this situation. The individual, in order to function in a way that maximizes living in a specifically structured environment, must rely on others.

Onset Must Occur Before Age 18 Years

The developmental period is the part of an individual’s life prior to age 18 years.14

Degrees of Severity of Mental Retardation

Mild Mental Retardation

In some classification systems, this is the "educable" category. The IQ range is 55 to 70. This is the highest functioning level and the largest category. Approximately 85 percent of individuals diagnosed as mentally retarded are in this category.14 The Department of Developmental Services lists 39 percent of its clients in this category, but 18 percent of its client base does not have a diagnosis of mental retardation.15

The level of functioning may change with age. During preschool years, these individuals develop communication and social skills and have minimal impairments -- particularly in sensorimotor areas. During the school years, academic achievement may develop to a sixth-grade level.14 Sometimes comments are made about a person having the mental age of an 11-year-old child. This may be true to an extent, but the important point to remember is that an adult does not have the mind of an 11-year-old child. Based on chronological age, this person has more life experiences than a child does. The mental age is based not only on academic achievement, but also on such factors as vocational or skill training, interpersonal relationships in society, and the work environment. Typically this individual reads for information but not enjoyment. An independent living environment is often possible or a shared or supervised living situation.

Moderate Mental Retardation

In some classification systems, this is the "trainable" category. The IQ range is 40 to 55. This is the second-highest functioning level. Approximately 10 percent of individuals diagnosed as mentally retarded are in this category.14 In California, the Department of Developmental Services reports that 19 percent of its clients are in this diagnostic category.15

Academic achievement beyond the second-grade level is not a reality. Training in community and occupational skills can be a benefit. Development of communication skills in early childhood followed by personal care become important to this individual. While this group cannot read for information, unskilled and semiskilled work is possible in sheltered environments. Living is in supervised settings, whether at home or in care facilities.

Severe Mental Retardation

The IQ range is 25 to 40. This is a lower functioning level. Approximately 3 percent to 4 percent of individuals diagnosed as mentally retarded are in this category.14 The Department of Developmental Services reports that 10 percent of its clients are in this diagnostic category.15

Speaking ability may develop during school-age years in addition to minimal self-care skills. Skills are limited to simple tasks and sight recognition of "survival" words. Performance of tasks, as well as living, is usually under supervision.14

Profound Mental Retardation

The IQ range is less than 25. This is the lowest functioning level. Approximately 1 percent to 2 percent of individuals diagnosed as mentally retarded are in this category.14 The Department of Developmental Services reports that 8 percent of its clients are in this diagnostic category.15

A diagnosed neurological condition usually constitutes the reason for an individual’s classification in this category. Training is limited because of sensorimotor deficits. Continual supervision is necessary, and living must be in sheltered environments.

Unspecified Severity of Mental Retardation

Although the diagnostician may face a strong presumption of mental retardation, sometimes it becomes difficult to classify. Perhaps the individual cannot be measured by standardized intelligence tests because of a young age or lack of cooperation. This assessment is more difficult in the very young, except when presented with profound deficits.14

Measurement of Status

Functional assessment in children is "an effort to systematically describe and measure a child’s abilities and limitations when performing the activities of daily living."17 Measurement often depends on the value of the information. While educators may value the measurement of activities of daily living for purposes of program planning to develop skills, medical professionals may focus on etiology or physical and neurological impairment. Variations continue to exist, and future research will need to focus on the relative value of measurement instruments as a tool for educators, parents, and rehabilitation professionals and as a tool for medical professionals, especially in children with disabilities.17

Developmental assessment can identify children who might have permanent developmental delays. While maternal education is one of the best predictors of developmental delay at age 18 months, at age 8 years maternal education and parental assessment scores are the best predictors of school achievement. At age 14 years, parental assessment scores and socioeconomic status are the best predictors of school achievement with the scores being the strongest predictor in children with intellectual disability.18 Related limitations in behavior adaptation is similarly shown through the individual’s personal independence and social responsibility at certain ages and combined with cultural influence. There are milestones when various skills can be seen:

* Infants: gesture language, such as waving good-bye;

* School years: school achievement; and

* Adulthood: social and economic adjustment.

Self-Injurious Behavior

Dentists, as part of interdisciplinary teams, must be aware that self-injurious behavior can arise in people with severe and profound mental retardation. Generally, as the degree of cognitive function decreases, the prevalence of such behavior increases.19 The most common clinical feature is lip biting or additionally biting the buccal mucosa. Lesch-Nyhan syndrome is a genetic disorder with these same features and includes biting the digits of the hand.20 Lesch-Nyhan syndrome is not a common occurrence, so self-injurious behavior is more commonly a manifestation in individuals with the greatest mental impairment. Control of this behavior may involve behavior modification, restraints, padding, sedation, or extraction of the remaining teeth.21 The level of intellectual functioning is a primary factor allowing success in the area of behavior modification.

Down Syndrome

As of May 2000, the entire 21st chromosome was mapped in the Human Genome Project. Researchers were surprised to find only 225 genes present on the chromosome: 127 known genes, 98 predicted genes, and 59 pseudogenes. Down syndrome is caused by Trisomy 21, an extra copy of chromosome 21.22 Down syndrome affects 1 in 700 live births and has among its characteristics mental retardation. Only a subset of chromosome 21 genes may be involved in the phenotypes of Down syndrome.23

Cause

During reproduction, cell division occurs in the ovaries and testicles when a cell divides into two. Each of these cells has half the chromosomes (23) of the parent cell (46). This process is called meiosis. In all but 5 percent of Down syndrome cases, one cell has two 21st chromosomes and the other cell has one 21st chromosome, which results in the fertilized egg having three 21st chromosomes, called Trisomy 21. The extra chromosome changes the normal number of 46 chromosomes in each cell to 47.24

Translocation is another type of chromosome abnormality appearing in 4 percent of the cases where an extra 21st chromosome attaches to the existing 21st chromosome. In one-third of the translocation cases, parents should receive genetic counseling and testing because one parent could be the translocation carrier.24 Mosaicism is a feature in 1 percent of the cases. The mosaic designation comes from some cells with 46 chromosomes and some cells with 47 chromosomes.25 There are two ways mosaicism occurs:

* When the cell has three 21st chromosomes in the initial zygote, the extra 21st chromosome is lost in one or more cell lines during cell division; and

* When the cell has two 21st chromosomes in the initial zygote, one duplicates during cell division.24

Chromosome 21 has a relatively low gene density, which may account for Trisomy 21 being one of the only viable human autosomal trisomies.22 People with Down syndrome have mental retardation, recognizable physical features, and frequently congenital heart disease and other developmental abnormalities, and may have early onset Alzheimer’s disease, increased risk for some leukemias, immunological deficiencies, and other health problems.26

Physical Features

Recognizable physical features include these characteristics:

* Brachycephaly -- Flattened occiput and shorter anterior-posterior craniofacial dimension. When tonsils are present, the tongue may protrude because of reduced space.27

* Ocular hypertelorism and slanting of the eyes;28

* Epicanthal folds on the inner corner of the eyes;25

* Brushfield spots -- white flecks of the iris;29

* Depressed nasal bridge;25

* Slightly smaller ears, feet, hands, and stature;25

* Decreased muscle tone;25 and

* Smaller mouth and hypodontia.30,31

Systemic Features

Cardiovascular

People with Down syndrome are known to have certain associated features of greater frequency than the general population. Mitral valve prolapse was revealed by echocardiogram to be present in 50 percent of a group with Down syndrome compared with the general population, which normally has a 5 percent to 15 percent prevalence. Many of these individuals lacked auscultatory findings of heart murmur.32 Cardiac anomalies such as atrial and ventricular septal defects, A/V communis, and patent ductus arteriosis are corrected with pediatric surgery procedures.33

Musculoskeletal

Skeletal muscle tone is reduced in Down syndrome.27 Joint problems include subluxation of the patella and dislocation of the hip joints.25 Atlantoaxial instability is present in an average of 15 percent of people with Down syndrome, but only 1 percent to 2 percent requires surgical attention. This condition is a result of ligamentous laxity increasing mobility between the C1 and C2 vertebrae.25,33 Ligamentous laxity is generalized causing hyper-reflexibility of joints throughout the body.27

Oral Conditions

Periodontal conditions, caries, and preventive dentistry approaches are considerations in management of the oral health needs of patients with Down syndrome.

Periodontal Conditions

Early onset of periodontal disease often begins with the primary dentition.34 Rapidly progressing periodontal disease leads to early tooth loss.35,36 In children with Down syndrome, while the pathogens were no different than in the control group, all of the pathogens were detected with greater frequency. Porphyromonas gingivalis was widely distributed, increasing the severity of gingivitis in the group older than 5 years.37 Children with Down syndrome have a different leukocyte response together with more extensive gingival inflammation than do children without Down syndrome.38 Progression of periodontal disease is marked by occasional acute symptoms (infection, inflammation, pain) followed by chronic progression of disease.28 Factors that lead to a higher susceptibility of periodontal disease in patients with Down syndrome include atypical patterns of T-cell immunodeficiency together with functional defects of polymorphonuclear netrophil leukocytes and monocytes. The individual has an inadequate reaction to bacterial attack, altered makeup of connective tissue, and an antigenic stimulus overloading an immature immune system. This is seen more frequently in people with Down syndrome living in care facilities compared with those living at home.39

Patients with Down syndrome have seven times the frequency of Actinobacillus actinomycetemcomitans than a non-Down syndrome control.40 The relationship between gingivitis and the host response to oral microorganisms in Down syndrome by age shows different microbiological colonization for children younger than age 5 compared with associated gingivitis at puberty. Only A. actinomycetemcomitans colonization is associated in both groups.41 Future study is needed to clarify whether a higher A. actinomycetemcomitans antibody response is pathogenic or protective as may be the case in juvenile periodontitis.42 In Trisomy 21, periodontitis subgingival debridement reduces the presence of bacteria but not herpesvirus. Periodontal herpesvirus-bacteria coinfections may promote growth of subgingival bacteria capable of reducing periodontal defense mechanisms leading to periodontal breakdown.43

Caries

Anecdotal thought typically follows the line of thinking that patients with Down syndrome seem to have less caries. Primary molars in patients with Down syndrome show an equal or increased crown dimension compared with the non-Down syndrome population; however, permanent teeth in patients with Down syndrome show a smaller dimension. During an early stage of gestation, there may be a transitory acceleration of mitotic activity in the developing enamel organ affecting primary teeth. Retardation of growth would follow, reflecting the development of smaller permanent teeth.44 It is unknown whether this factor contributes to a reduced caries rate. In children with Down syndrome, it is unknown whether antibodies are protective or responsible for reduced caries rate. A positive correlation was found between the caries rate and serum IgM antibody titers against Streptococcus mutans.41 A study of three groups of preadolescent children -- mental retardation, Down syndrome, and non-mental retardation Down syndrome -- showed significantly reduced caries in the patients with Down syndrome (84 percent caries free) compared with the other two groups. Streptococcus mutans counts were lowest in the population with Down syndrome and significantly lower than the group with mental retardation.45 A follow-up study of similar adult populations showed the same results.46

Preventive Dentistry

Oral hygiene regimens and the motivation of the dental team influence the oral health of all individuals. Systemic problems also require appropriate precautions and therapy for patients with Down syndrome. Preventive dental health practices in children with Down syndrome are decreased when less help is given during tooth brushing.47 Decreased musculoskeletal development suggests a need to ensure attention to oral hygiene practices with assistance when necessary. Similarly, children with Down syndrome are less likely to be taking fluoride supplements and are older when making their first dental visit.47 Children with Down syndrome benefit from efforts of a well-motivated dental team utilizing a comprehensive preventive dental health program that incorporates plaque control, topical fluoride, and pit and fissure sealants. Furthermore, the early teenage years are the best time for patients with Down syndrome to understand and cooperate effectively in a preventive program.48 Patients with Down syndrome who are also immunocompromised may be susceptible to toxic shock syndrome. Dental management of odontogenic infections requires correlation with the treating physician.49 Prophylactic antibiotics are recommended prior to emergency dental treatment within six months following a toxic shock syndrome incident.50 The reduced anterior-posterior cranial dimension can lead to sleep apnea. Patients with Down syndrome and other developmental disabilities sometimes receive therapy for sleep apnea using a mandibular protracting device (modified Esmarch appliance). The patient with Down syndrome may benefit from use of this therapy, which allows free mandibular movement and prevents airway collapse.51

Conclusion

Andrew, the high school teenager, is now homecoming king. As we celebrate with him, let us always be aware of our obligation as members of society to advocate for those of us who typically do not have advocates. Andrew’s dream was met, although his expectations were minimal. This article explored the topic of developmental disabilities generally and mental retardation and Down syndrome specifically. Dentists must understand the issues related to developmental disabilities. Our awareness and even our scope of practice will expand. If a dentist cannot treat a patient with special needs because the difficulties presented are too complex, he or she must remember to see the patient, evaluate, and refer to the dentist with expertise in this field. Dentists need not reject patients sight unseen or abandon them. Dentistry’s collective goal is to get the patient to a treating dentist capable of providing necessary care. As Andrew’s friend Hannah reminds us: "So many times kids with disabilities don’t get attention like that. It’s attention they deserve as much as anybody else."

Author

Stanley R. Surabian, DDS, JD, is chief of dental services and program director, general practice residency, Community Medical Centers, in Fresno, Calif.

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To request a printed copy of this article, please contact/Stanley R. Surabian, DDS, JD, University Medical Center, Division of Dentistry, 445 S. Cedar Ave., Fresno, CA 93702, or at ssurabiandds@communitymedical.org.

 

Table 1. The Department of Developmental Services Client Development Evaluation Report Breakdown of the Number of Individuals With Specific Diagnostic Categories.8
Disability Number With Disability Percent With Disability
Mental retardation
115,671
82
Epilepsy
32,248
23
Cerebral palsy
29,984
21
Autism
13,511
10
The numbers may reflect duplicated counts because clients may have more than one disability.



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