“Greater effort must be made to promote increases in physical activity participation among persons with Down syndrome and developmental disabilities in order to reduce the potential health risks associated with low fitness and sedentary behavior” (Rimmer, 2004). Examples of diseases that are associated not maintaining an ideal weight include: hypertension, predisposition to diabetes, elevated cholesterol, increase heart workload, increased likelihood of sleep apnea, stress on joints and impaired mobility (Mandrola, 2004).
The strength levels of adults with mental retardation have been shown to be very poor (Rimmer, 1994). Because of this, adults with mental retardation are at an obstacle to exercise for any length of time. The high level of obesity (excess fat) found in people with mental retardation expose them to a higher risk for many different types of diseases that are associated with high levels of body fat (Rimmer, 1994).
Deinstitutionalization of individuals with MR and developmental disabilities has increased the demand for dental services for these patients by community practitioners
Building Better Hygiene 5
(Waldman, Perlman, 2001). Monitoring the health care of the residents can be difficult when the delivery of service and health records is disseminated among multiple providers and locations (Waldman, et al., 2001). Deinsitutionalization, with the resulting group homes and community residences, has resulted in a breakdown in the continuity of health services-especially dental services. Parent/guardians now assume the responsibility for obtaining needed dental care from community practitioners (Waldman, et al., 2001).
The successes of community-based programs depend on the availability of support services, including the following: Private dental practitioners who are trained and willing to provide care (Waldman, et al., 2001). Studies have shown that most dental students receive minimal preparation in the care of patients with special needs. For example, in 1999, “…53% of dental schools provided fewer than 5 hours of didactic training in special care dentistry. Clinical instruction in this area constituted only 0-5% of the predoctoral student’s time (Waldman, et al., 2001).
No nationwide services have been conducted to determine the prevalence of dental disease among the various populations with disabilities (Waldman, et al., 2001). There is a general agreement that the population with special needs has higher rates of poor oral hygiene, gingivitis and periodontitis than the general population. Moderate and severe gingivitis is almost always present-with degree and extent increasing the age and degree of mental retardation-especially for individuals with Down Syndrome (Waldman, et al., 2001). In Sydney, periodontal disease and orthodontic problems most common (86%) among those with intellectual disabilities, which are twice as, frequent as general population (Beange, et al., 1999).
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The severe periodontal inflammation often seen in children with Down’s syndrome is directly linked to increased concentrations of oral bacteria. Several factors have been implicated in the periodontal problems of patients with Down’s syndrome, including poor oral hygiene, an impaired immune system, fragile periodontal tissue, and early senescence. The numbers of bacterial species increased with age, and the severity of the periodontal inflammation was directly related to increased concentrations of pathogens (Silver, 2000).
Third party coverage represents 53% of dental costs, compared to 97% of hospital costs, and 84% of physician costs. In addition, government expenditures cover less than 5% of dental costs, compared to 39% of hospital costs and 68% of physician costs. As a result, in many cases, youngsters with mental retardation or developmental disabilities, receive limited dental care, and eventually “age out of care” when they reach adulthood (Waldman, et al., 2001).
In actual practice, dentists often refuse to accept Medicaid patients. Additionally, people with MR are doubly burdened if behavioral issues make dental or medical treatments difficult (Fisher, 2004).
Kentucky ranks 48th out of 50 states in services for the disabled adult. This means that there is little funding for adults with disabilities in Kentucky (Schneider, 2004). The research and assessment findings that this paper is based upon are the participants at Harbor House in Louisville, Kentucky. In the immediate area, there aren’t any other facilities that give the services that Harbor House gives to their participants. All participants at Harbor House have some type of developmental disability, for example,
Building Better Hygiene 7
mental retardation, Down’s syndrome, autism, seizure disorder, brain tumor or injury, etc and all are older than 21 years of age.
Harbor House is an institution that provides programs and services to those with mental retardation. Their mission is to “enhance the lives of people with disabilities through employment, self-determination, education, and community building opportunities, with an emphasis on person centered planning, vocational training, and supportive employment.” The staff of Harbor House strives to give a friendly place for disabled people to turn to for assistance. The institution provides job training, as well as, personal assistance for developing personal and communication skills. These skills will allow the participants to feel needed and will help them to be as self-sufficient as possible.
Harbor House was founded in 1992 by the parents of eleven individuals with mental retardation. These parents were looking for a place that their children could turn to after they graduated high school at age 21. After this age, many institutions would no longer accept their children because they were considered adults; therefore they needed an adult facility that would still be able to provide services that were similar or built upon what they had learned in high school. Like many communities around the globe, adult assistance is hard to find and even harder to pay for. There seems to be a lack of funding in the government and a lack of participation needed from community members that are required for these facilities to be established. The parents came together to develop what is now known as Harbor House.
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Harbor House became a refuge for the individuals with mental retardation and had developed reliance upon their parents. It is especially hard when this reliance is established without any teaching of self-sufficiency and then something happens to the parent and the child is left to fend for him or herself. In the words of one of the original founders “The dedicated parents of Harbor House wanted their adults to continue to strive for their desires to work and socialize in the community. Harbor House offers the future for this vision by opening more doors throughout extensive programs and services.” In the beginning Harbor House had 36 participants, and now today the number has expanded to 72 members.
The participants of Harbor House use the institute as a way to stay involved with the community and to attain vital life skills that they will need as time goes on. The facility is open so that they are available to attend the program Monday through Friday, from 8:00 am to 3:00 pm. Participants handle bulk mailings, industrial subassembly and medical records management, allowing them to develop a sense of responsibility and an increased measure of self-esteem, while gaining skills in communication and cooperation. Programs and services include, but are not limited to pre-vocational training, life skills training, day habilitation services, physical fitness, creative arts and social skills.
Recently certified as a Medicaid waiver program provider, Harbor House offers Supports for Community Living (SCL). The SCL program provides an alternative to institutional care for individuals with mental retardation or developmental disabilities. As an SCL provider, Harbor House provides: support coordination, community habilitation, supported employment, community living supports, behavior supports, respite and pre-
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vocational services. In 2004, Metro Council of Louisville voted $16,000 for Harbor House of Louisville Inc. for a program that gives jobs and training to people who are mentally retarded (The Courier-Journal, 2004).
Medicaid is a health care coverage program that is state funded. The federal funded version of this is Medicare. Most people with developmental disabilities have social security or disability payments that cover a fraction of their living expenses. For most participants at Harbor House with the history presented it is a range of anywhere from $564 to $584 a month that is paid as supplemental income.
Medicaid does offer dental coverage for those that may use it. The coverage includes visitations and only medically approved procedures; for example, braces cannot be used as a cosmetic correction. The next issue that comes into play is: Do the dentists accept Medicaid? There were 23 local dentist offices contacted and of those, only 3 accepted Medicaid. This could be a conflict with parents and guardians who wish to give their children dental care, because dentists don’t accept it, paying out of pocket are almost too expensive at times. This is also taking into consideration any supplemental income isn’t enough to pay out of pocket dental visits plus living expenses.
If paying for the expenses isn’t an issue then maybe finding a dentist who accepts developmentally disabled patients might be. Out of the 23 dentists offices called, 12 did accept those with developmental disabilities but if the patient were unable to actively cooperate then only 1 of those 12 would sedate if necessary (Appendix C).
When observing the participants at Harbor House, the most notable characteristic was weight issues. On one given day, there were 46 participants that were measured
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heights and weights. These numbers were used to calculate body mass index (BMI) of each individual (Appendix A). The average BMI for the 46 participants was 32.5; obese Body Mass Index considered > 30.
The participants were also asked what sort of snacks they liked to eat or asked their favorite foods. Many answers included, chips, cookies, chocolate and nine participants answered with apples or other healthy choices (Appendix A). While watching the participants eating lunch one day, there were no more than 10 who brought healthy snacks
When assessing dental hygiene, 41 participants were asked if he/she brush his/her teeth and if they went to a dentist. Subjectively, out of 41, 25 stated that they go to the dentist and 27 stated that they brush their teeth. Objectively, out of 41, 28 had discolored rotted or out-of-line teeth. By using these different types of data, the realization of maybe the participants telling us about brushing their teeth and going to the dentist was the “right” answer and maybe felt that they had to say yes.
Given all this information, it was apparent that teaching in dental hygiene and healthy eating was in order. A local dentist helped to provide a tooth and brush model in order to teach participants to brush their teeth. The same dentist contacted Colgate and was able to get toothbrushes and toothpaste donated to give to each participant to keep in their locker at Harbor House.
Coordinators of the project went to a facility that stocks supplies to make little crafts and school projects. It was here that they were able to make doorknob hangers to remind the participants to brush their teeth in the morning, turn it over and brush them at
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night. Small groups of the participants were taken into the bathroom to be taught how to brush their own teeth in front of a mirror. Teaching was done to ensure the clients understand that if they don’t brush their teeth, “bad” things could happen, such as fall out, etc.
For eating healthy, the coordinators made a food pyramid poster to be mounted in either the community room or in the lunchroom where everyone eats to remind them of the healthy choices that should be made in a day. A teaching project was done in which they got food magazines, cut out pictures of food and identified which food group that food belonged in. Everyone got his or her own picture of the food pyramid to keep or to color. Different fruits and vegetables were brought in for the participants to try and maybe discover if they liked it or not. This was done to show healthier options of snacking rather than a Little Debbie cake or chips.
When talking with program coordinator and other staff, they were very helpful in pointing out the observations in which they had made. Parents or guardians buy easy things for lunch, such as, frozen dinners, cakes, chips, and cookies. Research was then implemented and multiple snack foods and frozen dinners were pulled and compared for fat, calorie, and carbohydrate content. Price was also a consideration in pulling the foods in which to compare. The results ended with a majority of unhealthy foods being less expensive and when taken into consideration the amount of the supplemental income as listed above, healthy foods almost seem to be out of reach as far as money is concerned, especially for a month’s supply (Appendix B).
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Harbor House staff gave verbal compliance to try and implement the participants to brush their teeth after he or she eats, which in worse case, they would have brushed their teeth at least once for that day. The food pyramid mounted in the kitchen or community room, magnet/doorknob hangers, and food comparison chart will be left for the participants to use and if parents need something to go by to decide upon healthier choices. There will be a copy of two lesson plans for nutrition education that the staff may decide to use with participants in the future, along with a copy of all teaching papers used for the implementation of the program.
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References
Schneider, C. (2003, September 24). Crusade for adults is needed as well. The Courier-
Journal, p. D:3.
Mandrola, J. (2004, October). The most important nutritional factor in heart disease?
Kentuckiana Health Fitness. Retrieved October 12, 2004, from
ionID=18.com
Rimmer, J. H. (2004). Exercise; program improves physical fitness in adults with down
syndrome. Obesity, Fitness & Wellness Week, p. 430.
Fisher, K. (2004). Health disparities and mental retardation. Journal of Nursing
Scholarship, 38:1, 48-53.
Anderson, L.L., Lakin, C., Mangan, T.W., & Prouty, R.W. (1998). State institutions:
thirty years of depopulation and closure. Mental Retardation, 36(6), 431-443.
Horwitz, S.M., Kerker, B.D., Owens, P.L., & Zigler, E. (2000). The health status and
Needs of people with mental retardation. New Haven, CT: Yale University
School of Medicine and Special Olympics, Inc.
Silver, S. (2000). Periodontal problems in down’s syndrome. The Lancet, 355, 812.
Rimmer, J. (2004). Aging, mental retardation and physical fitness. Retrieved on October
12, 2004, at
Beange, H., Nicholas, L., Parmenter, T. R. (1999). Health targets for people with an
intellectual disability. Journal of Intellecutal & Developmental Disability, 24,
283-298.
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References
Weldman, H. B., Perlman, S. (2001). Community based dental services for patients with
special needs: a reasonable goal for new york state. New York State Dental
Journal, 67, 39-44.
Harbor House of Louisville Inc. “A Place Meant to Be” [Pamphlet]. (2003). Publishers
Printing Co.
