health disparities and mental retardation

Clinical Scholarship

Health Disparities and Mental RetardationKathleen Fisher

Purpose: To identify health care needs and the availability and accessibility of health careservices for people with mental retardation (MR).

Methods: Review of the literature on health disparities and mental retardation was performedusing MEDLINE, PubMed, the Cumulative Index to Nursing & Allied Health Literature(CINAHL), and PsycInfo from 1992 to 2002.

Findings: Deficiencies in care identified in the literature included general health screeningand care for physical symptoms, mental health, women’s care, dental services, health main-tenance, and prevention.

Conclusions: Disparities in health care place people with MR at high risk for morbidity andpremature mortality.

JOURNAL OF NURSING SCHOLARSHIP, 2004; 36:1, 48-53. C©2004 SIGMA THETA TAU INTERNATIONAL.

[Key words: health disparities, mental retardation, vulnerable populations]

* * *

D isparities in health care for people with mentalretardation are common problems that often at-tract little attention from health care professionals

or public policymakers. In December 2001, for the first time,the U.S. Surgeon General David Satcher convened a nationalconference on Health Disparities and Mental Retardation.Satcher said: “Too many doctors and dentists either refuse totreat mentally retarded patients or give them inferior care”(Cass, 2001, p. 6). Consequently, this lack of care placespeople at high risk for morbidity and premature mortality.This review was conducted to identify health care needs andthe availability and accessibility of health care services forpeople with MR.

Background

“Healthy People 2010,” a national health care policyagenda, is designed to improve the health of all U.S. citizensby increasing the quality and years of healthy life and elim-inating health disparities. The National Institutes of Healthdefined health disparities as “Differences in the incidence,prevalence, mortality and burden of diseases and other ad-verse health conditions that exist among specific populationgroups in the United States” (Kirschstein & Ruffin, 2000,p. 1). Although various explanations are often offered forthe existence of such disparities, they are most commonlyviewed as the result of social, economic, and political condi-tions, or because of poverty, ethnicity, or marginalized socialstatus (Flaskerud et al., 2002).

Achieving the goals of Healthy People 2010 is thereforechallenging for people with MR, because they have diffi-culty interacting with their environment, frequently live in

poverty, are marginalized by society, and experience dispar-ities in health care service delivery.

People with developmental disabilities (DD) have chronicdisabilities that are attributable to mental or physical impair-ments that are evident before the age of 22. The term “de-velopmental disabilities” encompasses MR, sensory deficits(hearing, vision, speech), orthopedic problems, and condi-tions such as cerebral palsy and autism or pervasive devel-opmental disorder (James, Ashwill, & Droske, 2002). Peo-ple with these disabilities, however, including those withcerebral palsy and autism, do not uniformly have MR(Horwitz, Kerker, Owens, & Zigler, 2000). Commonalitiesacross groups included within the DD category exist, andmost if not all will experience the stigma associated withhaving a disability. In addition, people with DD have life-long service needs and routinely experience barriers whenaccessing health care services.

The focus of this review is one segment of the DD pop-ulation: people with MR. Three criteria need to be met toestablish that an individual has MR. These include: impairedintellectual functioning level (IQ) 70 or less, significant limi-tations in two or more adaptive skill areas, and onset beforethe age of 18 (Kaplan & Sadock, 1998). Adaptive skills, suchas communication, self-care, social skills, and self-direction,

Kathleen Fisher, PhD, CRNP, Beta Sigma, Assistant Professor, School ofNursing, College of Health and Human Development, Pennsylvania StateUniversity, Hershey, PA. Correspondence to Dr. Fisher, School of Nurs-ing, Pennsylvania State University, 600 Centerview Drive, 1300 ASB/A110,Hershey, PA 17033-0855. E-mail: [email protected]

Accepted for publication October 10, 2003.

48 First Quarter 2004 Journal of Nursing Scholarship

Health Disparities and Mental Retardation

are needed to actively engage in community living. Peoplewith MR by definition have difficulty interacting with theirenvironment. They are considered a vulnerable populationthat places additional demands on the health care systemby virtue of their specific needs (Houghton, 2001). Mentalretardation can affect anyone from any ethnic or economicbackground.

The prevalence of mental retardation is estimated to be atabout 1% of the U.S. population (Kaplan & Sadock, 1998),or roughly 2.5 million people. According to the Associationof Retarded Citizens, 1 of every 10 American families isdirectly affected by mental retardation (The Arc, 2002).

Nurses committed to health promotion and preventionneed to be aware of the existing and future health care,special needs, and challenges that affect services for thesepeople. This review includes studies of health care issuesimportant to the MR population and gaps in care.

Methods

Literature from 1992–2002 was identified and retrievedusing: the Medical Literature Analysis Retrieval System(MEDLINE, PUBMED), the Cumulative Index to Nurs-ing and Allied Health Literature (CINAHL), and PsycInfo.Search terms included: health disparities, mental retarda-tion, and health services.

Articles were included in the review if they specifically ad-dressed health disparities or gaps in care or service deliveryas the main focus of the study. Peer-reviewed articles includ-ing research studies and theoretical and policy papers wereevaluated. Health care issues of concern from the individualperspective, the family, or case managers were also includedin the analysis. A total of 54 articles were pertinent to theissues of health disparities for people with MR and wereadmitted for this review.

Findings

Of the 54 articles reviewed, 33 (61%) were research based.Only 7 of the research studies were conducted in the US.Clinical experiences, conceptual papers, or policy docu-ments pertaining to health care and access issues for peo-ple with MR were the topics of the remaining 21 articlesreviewed.

Articles were grouped into categories, based on the pre-dominant focus of the reviewed study. These categories were:special health care needs, health promotion needs, and un-met needs or gaps in care. Forty-six percent (n = 25) of thearticles were descriptive studies of special health care needsor prevalence of conditions related to MR. Chronic health is-sues and health promotion needs were the focus of 15 (28%)manuscripts. The remaining 14 manuscripts (26%) were fo-cused on gaps in health care including unmet health careneeds or barriers in access to health care. These categorieswere used to indicate the main focus.

Studies classified as “special needs,” for example, didnot necessarily lack attention to health promotion activitiesor access; rather their primary focus was related to MR,such as describing the incidence of early onset dementiaor Alzheimer’s disease in Down Syndrome (DS). Identifiedhealth disparities included general health screening and carefor physical symptoms, mental health, women’s care, and ac-cess to dental services. In addition, health maintenance andprevention issues are also often neglected in this population.

Special Health Care NeedsPeople with MR have increased prevalence of certain

health conditions, including thyroid disease, mental healthdisorders, seizure disorders, obesity, ocular anomalies, andpoor oral health (Kennedy, McCombie, Dawes, McConnell,& Dunnigan, 1997; King, 1993; Nespoli, Burgio, Ugazio,& Maccario, 1993). More than 50% (n = 13) of themanuscripts in the “special needs” category were focusedon complex mental health disorders (see Table 1).

The recognition of mental health disorders is difficultwith MR, partly related to atypical symptom presenta-tion, communication difficulties, and “diagnostic overshad-owing.” With diagnostic overshadowing the tendency ex-ists to attribute abnormal symptoms and behaviors to thefact that the person has MR while overlooking coexist-ing psychopathology (Crews, Bonaventura, & Rowe, 1994;Gabriel, 1994; Glick & Zigler, 1995; Prosser et al., 1998). Inaddition, the stigma surrounding mental illness affects thedelivery of needed services, especially for those who havedual diagnosis. With “dual diagnosis,” a mental illness isidentified along with the MR, but service delivery can beaffected because the person is caught between two servicesand often is left unserved (Reiss, 1993).

Visual and dental needs are of particular concern inthis population and they often go undetected or untreated(McCulloch, Sludden, McKeown, & Kerr, 1996; Turner &Moss, 1996). The primary care provider for example, oftenmanages dental care for people with MR. Unfortunately,perceived financial barriers can inhibit access to dental care(Schultz, Shenkin, & Horowitz, 2001); for example, fami-lies may be unaware of what their private insurance or pub-lic programs (i.e., Medicaid or Medicare) cover in regard todental costs. In actual practice dentists often refuse to acceptMedicaid patients. Additionally, people with MR are dou-bly burdened if behavioral issues make dental or medicaltreatments difficult (Dosen, 1993; Schultz et al., 2001).

Gynecologic care, a special health maintenance need forwomen with MR, is often overlooked in this populationbecause of the physical and ethical difficulties in providingsuch care (Prevatt, 1998). In addition, researchers have re-ported that providers have little training regarding the healthconcerns of aging women with MR, making avoidance inserving this population more likely (Gill & Brown, 2000).

Included among the special needs of this population is“future planning,” or addressing dependency issues forcare, which is especially important because people with

Journal of Nursing Scholarship First Quarter 2004 49


Table 1. Special Health Care Needs for People with MR

Article Country Research base Identified health care (HC) needs

Cooke, 1997 UK N = 293 Cancer deaths: higher incidence of GI cancerCrews et al., 1994 USA N = 1,273 Dual diagnosis with MR; diagnostic overshadowingDavidson et al., 1994 USA N = 199 Mental Health (MH): aggressive behavior, inadequate treatmentDurkin, 1996 USA Residential needs & community supportsEvenhuis et al., 1997 Netherlands N = 70 Special screening needs: hearing & visualFrid et al., 2001 Sweden N = 211 Congenital heart disease in Down SyndromeGabriel, 1994 USA N = 2 Dual diagnosis, need for education or treatmentGill & Brown, 2000 USA Need for routine gynecological careGlick & Zigler, 1995 USA N = 112 Dual diagnosis, atypical symptom presentationHowells, 1996 UK Identified special needs: vulnerability to exploitation and abuseJacobson, 1998 USA N = 44,810 Inadequate psychological services utilizationKennedy et al., 1997 UK N = 417 Nutrition needs/dysphagia issuesKing, 1993 USA Self-injury; mental health issuesMcCarthy & Boyd, 2001 UK N = 193 MH needs in Down SyndromeMcCulloch et al., 1996 UK N = 63 Undetected visual impairmentsMeins, 1995 Germany N = 32 Atypical symptoms of depression in MR, including increased behavior problemsMoss et al., 1997 UK Complex MH needs, inadequate MH servicesNespoli et al, 1993 Italy Immunological aspects of Down Syndrome (DS)Prevatt, 1998 USA Gynecological needs, lack of educationProsser et al., 1998 UK N = 68 MH issues, diagnostic overshadowingReiss, 1993 USA Mental illness in MR peopleShultz et al., 2001 USA Dental issues, need for provider educationTemple et al., 2001 Canada N = 35 Alzheimer’s in DSThompson, 2001 USA Need for futures planningTurner & Moss, 1996 UK Identified risk factors: special screening needs

MR are increasingly outliving their parents and caretak-ers (Thompson, 2001). This situation creates the need toaddress residential placement and services within the localcommunity, and it is a public policy issue as well (Durkin,1996).

Health PromotionThe average life expectancy of older adults with MR is

66.1 years, and younger adults with MR are expected to liveas long as their peers who do not have MR, which in 1997was 76.5 years (Anderson, Lakin, Mangan, & Prouty, 1998;Horwitz et al., 2000). Because of their increased longevity,they will likely confront the same chronic illnesses, such ascardiovascular disease, cancers, and diabetes, which affectthe general aging population. This increased life expectancyhas led to changes in patterns of morbidity and mortality,and the changing health profile of the person with MRrequires better health screening (Barr, Gilgunn, Kane, &Moore, 1999; Evenhuis, 1997).

Significantly increased risk factors for cardiovascular dis-ease, for example, were found in a study of 202 young adults(age 20–50) with MR. The study group averaged 5.4 medicaldisorders per person, and over 50% of those disorders hadpreviously been undetected. These researchers also pointedout that even when those chronic conditions were recog-nized, frequently they were not being properly managed

(Beange, McElduff, & Baker, 1995). Routine screening formedical and mental health disorders is crucial, and it was thefocus of the majority (60%) of the manuscripts reviewed (seeTable 2).

Unmet Needs or Gaps in CareResearchers have said that educational and health screen-

ing needs of people with MR demand urgent scrutiny, notingthat provision of care is a fundamental human right (Lennox& Kerr, 1997).

Even though people with MR have increased physical andchronic health problems, they are less likely to receive ad-equate medical services compared to those in the generalpopulation. Regrettably, little is known about the quan-tity and quality of services that people with MR receive(Horwitz et al., 2000). Multiple challenges in accessing carewere identified in the literature (see Table 3).

A survey of 125 general practitioners (GPs) in Englandindicated the need to provide general medical care for thecommunity-dwelling MR population, but participants be-lieved that health promotion and screening initiatives werethe domain of specialists, thus creating a gap in needed care(Bond, Kerr, Dunstan, & Thapar, 1997). This problem issimilar to the issue with “dual diagnoses,” that is, people arecaught between two systems and health care needs might beignored.



Table 2. Health Promotion Needs

Article Country Research base Identified health care needs

Barr et al., 1999 Ireland N = 373 Changing patterns of morbidity & mortalityBeange et al., 1995 Australia N = 202 Chronic health conditions undiagnosed or poorly managed: need for educationBell & Bhate, 1992 UK N = 183 Obesity prevalence and prevention strategiesCooper, 1998 UK N = 134 Needs of elder MR & HC screening issuesDosen, 1993 Netherlands Need for mental health (MH) screeningEvenhuis et al., 1997 Netherlands N = 70 Education need for active diagnosis & intervention of chronic health problemsFernhall et al., 1998 USA N = 34 Need for cardiac fitness in MRGrossman et al., 2000 USA Provider education needs for MRLancioni & O’Reilly, 1998 Netherlands Strategies to improve physical fitness & behavioral disordersLennox & Kerr, 1997 Australia Needs for education & health screeningMartin et al., 1997 UK N = 60 Screening needs for chronic & MH issuesPrasher, 1995 UK N = 201 Prevention of obesity key for community dwelling MR residents, esp. those with DSRimmer, Braddock, & Fujiura, 1994 USA N = 329 Health promotion & nutrition education needs for cardiovascular healthTracy & Hosken, 1997 Australia N = 36 Smoking prevalence, need for education & prevention strategiesWebb & Rogers, 1999 New Zealand Considerable HC needs; requiring screening program development

In another English study of 111 general practitioners, re-searchers found that 50% of those with Down Syndrome(DS) had never had a thyroid test, even though people withDS have higher prevalence of thyroid dysfunction (Jones& Kerr, 1997). Differences in referral patterns for peoplewith MR based on income were found in one study, suggest-ing the need for culturally sensitive, community-based inter-vention programs (Slone, Durrheim, Lachman, & Kaminer,1998). Researchers also identified unmet health care needsbecause of discrimination, stigmatization, and stereotypicalbeliefs (Houghton, 2001; Parkes, 1996). The stigma of MRhas been linked to societal misunderstandings, even amongmany health care providers, further adding to individual bur-den. This discomfort that has been described when interact-ing with MR patients influences the quality of care provided(Grossman, Richards, Anglin, & Hutson, 2000; Howells,1996; Lennox & Kerr, 1997; Parkes, 1996).

Table 3. Unmet Needs or Gaps in Care

Article Country Research base Identified health care needs

Anderson et al., 1998 USA Effects of deinstitutionalizationBetz, 2002 USA MR policy paper, barriers to careBond et al., 1997 UK N = 125 Provider attitude; unmet HC screeningCooper, 1997 UK N = 134 High rates of untreated illnessDriessen et al., 1997 Netherlands N = 475 Issues with access to MH servicesHoare, et al., 1998 UK N = 143 Caregivers’ unmet psychological needsHoughton, 2001 UK Unmet HC because of discrimination, stigmatization, & stereotypical beliefsJones & Kerr, 1997 UK N = 111 Unmet HC screening needs, e.g., thyroidNøttestad & Linaker, 1999 Norway N = 128 Access to qualified help reduced following deinstitutionalizationParkes, 1996 UK Rationing & stigma: unmet HC needsPlachaud et al., 1998 UK N = 54 Gaps in screening, e.g., thyroid in DSSlone et al., 1998 Israel N = 538 Different referral pattern due to incomeStores et al., 1998 UK N = 110 Behavior issues: unmet MH needsUSPHS 2001 USA Barriers to care for MR identified

In general, a lack of care providers knowledgeable aboutMR, attributed to inadequacies in professional educationand training, presents huge obstacles to health care for thispopulation (Cooper, 1997; Driessen, DuMoulin, Haveman,& van Os, 1997; U.S. Public Health Service, 2001).

Discussion

Future health care and service needs for people with MRare significant, as indicated in this review. The literatureshows that multiple barriers to accessing services exist in-cluding lack of resources and adequately trained health careprofessionals, and stigma associated with MR.

Recent advances in public health, medicine, and technol-ogy have benefited people with MR, and currently moreare living into middle and older ages than in the past. The



lack of attention to health promotion and maintenance is-sues clearly described in the literature has the potential toincrease the prevalence or severity of the predicted chronicillnesses that accompanies the aging process. Consequently,this emerging population of older people with MR will addcosts to a health care system already in financial difficulty.A public health crisis in care delivery might be experiencedif resources needed to support these people are not avail-able. In addition, the lack of knowledge and training aboutMR among health care professionals might compound thecrisis.

Health care educators should direct curriculum and pro-fessional training toward the care of people with MR. Unfor-tunately research within this population is difficult, and themajority of research-based studies reviewed (n = 26) wereconducted outside the US. Ethical concerns, including thecapacity to consent, risks involved with clinical trials, andquestions of autonomy, contribute to problems in research-ing health care issues for this vulnerable population.

Deinstitutionalization has contributed to the steady de-cline in the number of people with MR who are living inpublic institutions starting in the mid-1960s. People withMR continue to depend on family members or communitysupport agencies for residential care and services. As notedabove, this aging MR population might outlive their familycaregivers, and need community placement in group homes,intermediate care facilities, or some type of assisted livingarrangement. Currently, federal and state funds that havesustained much-needed programs for these people are beingdiverted to other programs.

Increasingly, in lieu of a family member or legal guardian,decision making will be the responsibility of proxy decisionmakers for health care and service needs of people with MR.Ethical questions related to autonomy and one’s capacityto consent, or determining a proxy if unable to consent,could result in delay or denial of health care services. Furtherresearch related to proxy decision making is necessary toadvance knowledge required to adequately address the needsof this population.

Conclusions

Disparities in health care place people with MR at highrisk for morbidity and mortality. Nurses must play a centralrole in advocating for this vulnerable population throughidentifying health care needs, education, managing services,and conducting research. Each of these activities will con-tribute to improved care and quality of life for people withMR.

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