An example of full inclusion: prevention of oral diseases. (Part IX).

Many of us consider ourselves advocates working to advance full inclusion of individuals with special needs. Significant progress has been made over the past several decades in improving educational, recreational, work-oriented and social opportunities. Yet in the realm of health and total well being, issues related to oral health are one of the most commonly cited problems by people with special needs. Often, just locating a dentist to treat a dental emergency or to repair a tooth is a major accomplishment. Difficulties accessing timely and appropriate dental services combined with complex lives can push prevention of oral diseases off the radar screen for individuals, parents or caregivers. Full inclusion includes prevention of oral diseases.

Prevention of oral diseases is much, much more than a cosmetic task accomplished with a toothbrush. The cornerstone of prevention is really the heart. Being pro-active and caring closely follow and together can overcome most obstacles.

The complete picture of prevention is composed of four major areas: a positive attitude, policy and programs; the adoption of the medical model; assessment; and the use of a customized oral health plan. For a lifetime of oral health without episodes of pain, bleeding or overgrown gums, or loose or decayed teeth, these four areas should be addressed.

Attitude, Policy and Programs

Imagine what life would be like if social service and healthcare professionals, policy makers, legislators and health insurance administrators all considered preventive oral health an essential service for people of all ages with special needs. Results of the 1994-1995 National Health Interview Survey on access to care and use of services by children with special healthcare needs indicated that the most prevalent unmet need was dental care.

Positive attitudes about prevention by the professional team, parents, caregivers, direct support professionals (DSPs) and the person with a disability also have a profound impact on the reality of day-to-day preventive measures. It is time to stop segregating it as a dental-only issue; oral health is an issue of total well-being.

For a lifetime of good oral heath, attitudes and action leading to services should start at infancy. Think of what it would be like if, in early start health programs, infants' and toddlers' oral condition were evaluated along with hearing and vision. Yet even when dental health programs are available they, are poorly used. For example, all children and adolescents enrolled in Medicaid are entitled to comprehensive dental services through Early and Periodic Screening, Diagnostic and Treatment program. However, only one in five of those children and adolescents actually receive such services.

Dental professionals and families often cite reimbursement issues as a barrier to care. What if there were a dental insurance coverage for "extra time and management"? Or if imagine adult prevention services were covered by Medicaid nationally, not just in some states? Even with existing insurance coverage, 55 percent of preschool-age children and 50 percent of school-age children do not have private dental insurance. For African-American preschool-age children, 65 percent are without coverage from private dental insurance.

Adoption of the Medical Model

Two types of diseases can occur in the mouth: cavities (also called decay and caries) and gum disease. Cavities and gum disease are the result of different types of bacteria and the body's reaction to them.

Diet, Demineralization and Dental Caries

What causes cavities in children and adults? Cavities are caused by acids which are produced when bacteria eat available sugars in the mouth. Sugar foods are fermentable carbohydrates such as sucrose, glucose, fructose and cooked starch. Cavity-causing (cariogenic) bacteria plus fermentable carbohydrates yield organic acids which can dissolve or demineralize teeth

Many people with special needs can be at greater risk of this dissolving process because of developmental disorders which cause weaker enamel. Additionally, some people have conditions such as GERD (gastro-esophageal reflux disease) that bring up acid from the stomach to the mouth. These acids too can dissolve the teeth.

If the dissolving process is caught early, then the tooth can be repaired (remineralized) by the saliva. When saliva also has fluoride in it, the tooth repair is stronger. An added benefit is that the fluoride-repaired tooth is even more resistant to future acid attacks. Fluoride can come from drinking water, fluoride-containing toothpaste, and over-the-counter (OTC) products. Fluoridated water reduces by half the number of cavities a child could get. Stronger concentrations of fluoride for home use are available by prescription or can be applied in the dental office.

The Importance of Saliva

Good saliva flow is critical for maintaining strong tooth enamel. Often throughout the day, after we snack, drink or eat, the dissolving (demineralization) and repairing (remineralization) battle takes place in our mouths. The dissolving process is related to the acid-base balance in the mouth. Normally the pH or acid-base measure of saliva is neutral (pH of 7), When sugar foods are eaten and cavity-causing bacteria are present, in the first 5 minutes the pH drops and becomes more acidic (pH of 4) This acid environment makes possible the dissolving-the-teeth process. Over the next 25 minutes, the saliva, if available, neutralizes the acid, and the dissolving process stops.

It takes about 30 minutes after the sugar exposure for the acid-base balance to return to neutral (pH 7). Saliva makes this neutralizing--also called buffering--process possible. Yet people with special needs frequently take medications (including psychotropic drugs and antihypertensives) which dry out the mouth or reduce salivation (xerostomia). Thus, the buffering benefit of the saliva is diminished, and those people are more at risk for cavities.

Prevention of Dental Caries and Gum Disease

Several practical strategies for preventing cavities in high-risk people include: conducting a caries risk assessment of an infant's parents with active decay; use of an anti-bacterial agent, such as chlorhexidine, or fluoride varnish; checking for an adequate amount of saliva; enhancing the saliva remineralization process with a fluoride mouthrinse twice a day; reducing the number of cavity-causing bacteria by brushing and flossing twice a day; and protecting the chewing surfaces of permanent molars with sealants. Further research and consensus development conferences are needed to establish practical clinical protocols for high-risk groups.

Infants are not born with cavity-causing bacteria. When parents or other caregivers share food, for example, spoons, etc., thenthe bacteria can spread. Although the experts may disagree when the "window of infection" occurs, the proposed time period is between 18 months and 2 years old. However, bacteria may be transmitted as early as birth. If parents of infants have active cavity problems, then they should be examined and treated too. Recent research reported that use of xylitol gum by mothers reduced the spread (colonization) of cavity bacteria to infants.

To consider dental caries (decay) as a transmissible bacterial infection is a paradigm shift for many health professionals and the public. Adoption of the medical model in dentistry means focusing on who is most at risk and addressing the cause of cavities--the bacteria--rather than the result--the decayed tooth. Consult oral health professionals to customize the prevention plan for the unique needs and abilities of each person.

Another part of the medical model is the concept of repairing or remineralizing the tooth. If cavities are caught early, then an over-the-counter (OTC) fluoride mouthrinse used twice daily for one minute could be beneficial. In the past, removing the diseased part of the tooth often was the focus of dental care. Fillings have little long-term effect on the cavity-causing bacteria.

Prevention of Gum Disease

Reducing the number of bacteria is also helpful for the prevention of gum disease. This is accomplished by focusing the toothbrush where the bacteria are most numerous: at the gumline, where the tooth and gums meet. Many bacteria also live between the teeth. Flossing can disrupt those bacteria and can be made easier with a floss holder. Some high-risk people may also need a brush-on prescription antibiotic. With people who can spit out, use a fluoridated toothpaste, which will also help fight cavities.

Seek professional advice about the status of the gums, follow prevention recommendations and get regular teeth cleanings--once or twice a year. Some people at high risk may benefit from teeth cleanings 3 to 4 times per year, but logistics and cost can be a barrier. If cleanings are done twice a year under general anesthesia, then careful evaluation of the risk to the individual should be reviewed.

Overcoming behavioral, physical and informational barriers

For those individuals with special needs who need assistance or have behavior issues, there are a number of aids to make brushing easier, faster and more fun Double-sided toothbrushes with flexible soft bristles are now available. With one motion, both sides of the tooth are brushed at the same time. To make the handle larger so the individual can be as independent as possible, poke a hole in a rubber ball 2 or 3 inches across and put the toothbrush handle into the ball. Powered toothbrushes are now available for about $20 to $25 per unit. A person's degree of independence is increased and assistance from the caregiver is lessened when the toothbrush used correctly.

Mouth props can be used to help hold the mouth open. These can be made with tongue blades and a washcloth, or they may be purchased. Assisting a person who needs help for most or all of the cleaning can be accomplished in another room, on the sofa or in other positions that are more comfortable for both of you. You can use a bowl for the person to spit into, or avoid the use of toothpaste. It is the physical movement of the bristles that disturbs the gum-disease bacteria; toothpaste is not needed.

Oral Health Assessments

Oral assessments are one way to put oral health on the radar screen. Physicians, nurses, social workers, OTs, PTs, nutritionists and agency administrators, plus individuals, caregivers or DSPs, should all be promoting oral health assessments. For example, in several social service agencies in California, one nutritionist and a physician were instrumental in starting agency-wide programs for oral health assessment.

Beyond the assessment, it is both professionals and those at home who must make the assessment and the customized preventive recommendations a reality on a day-by-day basis. For example, if the programs directors in a social service agency for people with special needs do not convey that total healthcare includes dental disease prevention, then the team--from the case manager to the parent--is likely to view prevention as a luxury or cosmetic task. It will not matter if a fluoride rinse or an electric toothbrush is in the cabinet if there is no oral health plan nor an expectation that preventive measures are a dally priority. This applies to individuals living with family, independently or in community-care facilities.

The Customized Oral Healthcare Plan

With the complex medical, nutritional, and social issues of children and adults with special needs, it can be challenging to remember oral health. But preventing gum and decay diseases today saves teeth and is easier than correcting the problem later. A plan helps everyone remember to prevent oral diseases. Copies of it should be found in the person's health chart and in binders in group homes, and it should be reviewed annually. The individual and the family should be educated to ask for this so it is written into the individual program plan (IPP) or the individual family service plan (IFSP).

An oral healthcare plan should address the various obstacles to oral health. Commonly cited obstacles can be divided into behavioral, physical, and informational (see the side bar for tips on prevention of gum and decay diseases). In surveys of parents, caregivers and DSPs, behavior issues are frequently listed as the biggest problem in carrying out regular oral healthcare processes. Desensitization, structuring the environment, and a reward system are some of the techniques for overcoming behavioral obstacles.

Addressing physical obstacles, such as a person's inability to hold a toothbrush or need for help with all or some of the hygiene, should be in the plan. Informational barriers can be eliminated through education and follow-up (see box, Partners in Prevention and Suggestions for Prevention).

To be comprehensive, the oral care plan must consider the full spectrum of preventive measures available today, such as reduction in sucrose exposure; use of fluoride by mouthrinse or swabbing; fluoride varnishes, sealants; chlorhexidine swabs or rinses; xylitol gum; and regular teeth cleanings.

The Last Word

The difficulties children and adults experience in accessing timely and appropriate dental care highlight the need for regular preventive measures. The increased vulnerability to dental decay and gum disease because of dry mouth, dependency on others, and competing, complex social and health issues, is further indication of the need for aggressive prevention measures. Progressive attitudes about providing preventive care and restorative and emergency dental services are the initial requisites of ensuring a lifetime of oral health.

Prevention-oriented attitudes serve as catalysts to promote the full inclusion of people with special needs into humane and timely preventive oral care. Prevention of oral diseases is much more a matter of the heart than the mind. Together we can make prevention a reality for people of all ages with special needs.

OVERCOMING OBSTACLES TO DENTAL HEALTH

ORAL HEALTH CARE PLAN

Name --                 Caregiver Name --               Date --

Assessment

a. Physical problems with oral hygiene: --

b. Behavioral problems with oral hygiene: --

Physical Skills and Aids

a. Skills being learned: --

b. Special aids: [] adapted toothbrush [] adapted floss holder
   [] electric toothbrush

c. Schedule for using disclosing tablets:

Plan for Partial Participation ([] not needed-person is independent)

a. Best position for assisting with oral hygiene: [] couch [] bean-bag
   chair [] other: --

b. Techniques and/or aids used by caregivers: [] mouth prop, [] floss
   holder

c. What part does caregiver perform: --

Plan for Structuring the Environment

a. Oral hygiene time and place: --

b. Are infection control procedures being used: --

c. Who will work with the individual: AM --
                                      PM --

Plan for Engaging the Client

a. Choices being offered: --

b. Limits the client can set: --

Plan for Reinforcers

a. What reinforcers are being used currently (e.g. music, book, TV): --

Plan for Shaping

a. What steps are being taught: --

b. What level of prompts is currently being used?

   [] Physical (hand-over-hand), [] Physical (touch), [] Pointing,
   [] Verbal

Other Prevention Actions

a. Fluoride rinses: [] Person rinses and empties mouth, [] Caregiver
   uses swab technique

b. Chlorhexidine: [] Person rinses and empties mouth, [] Caregiver uses
   swab technique

c. Diet: [] Decrease exposure to sugar and starches:

Professional visits and recommendations

a. Last dental cleaning appointment: Date -- Next appointment date: --

b. Next dental check up or treatment appointment: --

University of the Pacific School of Dentistry--Department of Dental
Practice and Community Service--2155 Webster Street, San Francisco, CA
94115--[phone] (c)1998

Suggestions for preventing oral diseases

Infants and toddlers:

Keep an infant's gums clean by rubbing gently with a wash-cloth moistened with water. This activity also can be a desensitization technique for children who are tactile defensive Use a flexible, soft-bristled child toothbrush as teeth erupt. Ensure daily fluoride by using a very small pea-sized amount of fluoridated toothpaste, starting at the age of one year. Wipe out excess toothpaste.

Seek an oral health consultation within six months of the eruption of the first tooth, as recommended by the American Academy of Pediatric Dentistry. This gives the child a pleasant, low-pressure experience with the health professional and can catch any problems, such as "nursing bottle mouth," early.

Avoid putting the baby to bed with a bottle of sweetened fluid (formula, breast milk or fruit juice). Instead, slowly dilute the liquid with water over several weeks and later use water only. Similarly, avoid leaving a bottle or sipper cup of sweetened fluid with the baby all day.

Infants' parents' and close caregivers' oral condition should be healthy, without active new carious(decay) areas. Mothers should have regular annual dental check-ups before and after the baby is born.

Parents and caregivers should examine their own prevention practices and attitudes about oral care visiting the dentist. What messages are being sent?

Some medications contain more than 50 percent sugar. When possible, have the child rinse and, especially at bedtime, brush the teeth and follow with a fluoride rinse or swab.

Ask about additional sources of topical fluoride to help with tooth repair.

Review the child's snacking behavior and/or food rewards used throughout the day. Day-long snacking on cereal, crackers and sweets feeds the cavity bacteria.

Ages 6 to 12 years

Place sealants on the new permanent molars. Watch for the eruption of the first permanent molars, starting when the child is about the age of six. Sealants are protective plastic coatings on the chewing surfaces of the teeth.

Look for excessive tooth crowding and ask if an orthodontic consultation is needed.

Continue with regular teeth cleanings and exams.

Examine the quality of the toothbrush. Use only a flexible, soft brush. Avoid hard and stiff brushes, as they can hurt and thus contribute to resistant behavior. Store each person's brush separately. Consider whether an electric brush might help now.

Consult with professionals. Use over-the-counter fluoride rinses or swabs once or twice a day for one minute, and brush with a fluoride-containing toothpaste.

Use floss holders to help the individual become as independent as possible and to protect against gum disease.

Use other rewards for behavior besides food. Especially avoid frequent use of decay-producing food such as candy, gum, soft drinks, etc., as rewards for desirable behavior at home and school.

Use mouth guards for children playing contact sports.

Adolescents and Adults

Arrange annual oral exams and annual or semiannual teeth cleanings. If the dental office does a "toothbrush" cleaning. which lasts about 10 minutes, then the calculus/tartar will not be removed. Ask about a complete teeth cleaning.

Confirm that an oral cancer exam is done at the annual dental exam. Check regardless of whether or not the individual is using tobacco products--including chewing tobacco. This exam is needed for everyone as they age, including people without any teeth.

Consult with a behaviorist and other professionals, as needed, to maximize independence and acceptance of daily preventive measures.

Save all the teeth you can. When teeth are removed, the bone that supported those teeth slowly disappears (resorbs). Over time this leaves less and less bone for partials and dentures. When people are placed on soft, pureed diets because lack of teeth and/or poor chewing ability, constipation is more likely.

Continue to monitor access to foods and drinks containing sugars (fermentable carbohydrates) such as sucrose, glucose, and fructose. Unlimited access all day long to vending machines filled with these items at school and work is very tempting.

Continue to protect individuals prone to falling against trauma to the face and teeth.

Watch for behavioral signs in non-verbal communicators, such as refusal to eat or drink; head banging or rocking; hands or fingers in the mouth; or a rapid change in temperament such as an increase in social withdrawal. These actions may indicate the person has oral pain or infections

Partners in prevention.

You are not alone in your interest and advocacy for oral health for people with special needs. Organizations have lay, health and social service professionals who directly serve and work to increase access to restorative and preventive services for people with special needs. Some of these groups include the Academy of Dentistry for Persons with Disabilities(ADPD), founded 50 years ago and a member organization of Special Care Dentistry, ADPD can be reached at www.foscod.org/adpd.htm and the American Academy of Pediatric Dentistry, with resources on the Links, Links, Links page; reach them at: www.aapd.org. Special Olympics, Special Smiles at www.specialsmiles.org has information and links. For educational resources, the National Oral Health Information Clearinghouse (NOHIC) lists can be accessed at http://www.nohic.nidcr.nih.gov

To locate services or speakers in your area for parents, caregivers, DSPs, etc., start by asking your general dentist or pediatric dentist. Or find your local dental or dental hygiene school by accessing the American Dental Educators Association (ADEA, formerly AADS) at http://www.aads.jvs.edu. Ask dental schools for clinics and such post-graduate programs as General Practice Residency (GPR) or Advanced Education in General Dentistry (AEGD) Programs. Faculty and residents associated with these clinics as well as alumni may be available in your community. Other resources to locate dental professionals could be the local chapters of their professional societies. For example, to identify your local dental society chapter, contact the American Dental Association (ADA) Web site at http://www.ada.org; the Hispanic Dental Association at http://www.hdassoc.org; and/or the National Dental Association at http://www.ndaonline.org. To identify your local dental hygiene society/component, contact the American Dental Hygiene Association (ADHA) at: http://www.adha.org.

RELATED ARTICLE: Make it a healthy smile: finding what works for your child.

Contributed by the HMS School

Kristen Millar, who has severe disabilities as a result of cerebral palsy, lives with her mother in Warminster, PA and attends Philadelphia's HMS School for Children With Cerebral Palsy as a five-day resident student. Although her parents separated twelve years ago, Kristen's father remains actively involved, spending time with her every weekend. She also has a dose relationship with her older sister Jessica, who is married and lives nearby. Totally dependent on her family and life-skills assistants at school for all personal care activities, Kristen uses a manual wheelchair because she can't control a power chair. Although she cannot speak, she manages to communicate many of her needs and reactions with facial expressions and sounds. "She's not a grumpy kid, but she is persistent," said Mrs. Millar.

Kristen is unable to take anything by mouth because of poor muscle control, and receives all nutrition through a gastrostomy tube. She also drools appreciably and might gag or aspirate. Her condition has been further complicated by several bouts of acute pancreatitis and issues with gastric emptying. Despite two recent and difficult hospitalizations, Kristen has been remarkably healthy and retains her cheerful disposition.

Tube feeding has an impact on Kristen's oral health. On a positive note, she has no cavities because, unlike most young people, she doesn't eat refined sugars. But chewing helps to clean the teeth and stimulate the gums. With tube feeding, Kristen misses those benefits. In addition, saliva pools in her mouth, promoting an extreme buildup of calculus (also called plaque or tartar).

Kristen's family and the school work together to provide two critical aspects of her preventive oral care--brushing her teeth several times daily, and scheduling regular professional cleanings to remove the calculus and examine her teeth and gums. Through trial and error, her family and caregivers have learned the most successful approaches.

Mrs. Millar said, "Power toothbrushes have been the latest, greatest invention for her home care. They've made the process more gentle and productive for her." She brushes Kristen's teeth in the shower, with the water turned off. Kristen sits up in a shower chair where her head is elevated, facilitating the brushing. Mrs. Millar said, "It works so well ... Kristen loves the shower, and the shower is so easy to clean up." Mrs. Millar taught Kristen to spit out toothpaste by making it a game rather than a chore. Over time, she has also talked a lot about not biting down on the toothbrush. She said, "Kristen's very cooperative for a kid who's extremely sensitive physically, particularly to touch around her mouth, but she does tend to bite down or regurgitate a little." Together, Kristen and her mother have worked out the kinks. Mrs. Millar said, "Earlier, her dental care was harder to do--she cooperates more now. We've become a better team, Kristen and I."

At HMS school, life skills assistant Linda Table is one of the staffers who clean Kristen's teeth three times a day with an electric toothbrush, to more easily remove tartar. Ms. Table uses only a small dab of toothpaste to avoid too much foam, which might cause Kristen to gag. She stands behind Kristen, using one hand to .support Kristen's head with her mouth open so that she won't bite down and the other hand to brush. The process takes about five minutes. Linda said, "Kristen has a good attitude about it. She doesn't get upset easily." As part of her preventive care at HMS, consultants Dr. Robert Lloyd or Dr. Manuel Album examine Kristen every three months and clean her teeth with an ultrasonic scaler.

Protecting Kristen's oral health is an essential aspect of her total medical care. Good dental care also protects her lovely smile and visual appeal--an important part of positive social interactions at home, at school, and in the community. Kristen's family strives to give her oral pleasures without compromising her health. They'll apply flavored lip gloss to her mouth or give her a taste of different foods by putting a tiny bit on a finger and touching Kristen's lips. Mrs. Millar said, "She absolutely loves it. She'll stare at you, as if to say `I want that and I want it now.'" She added, "We're crazy about Kristen. We get recharged hanging out with her."

Christine Ernst Miller, RDH, MHS, MA is an Associate Professor, Director of Community Programs and co-Director of the Center for Oral Health for People with Special Needs at the University of the Pacific School of Dentistry. Also, she is President of the Academy of Dentistry for People with Disabilities.