A focus group study was conducted with individuals with developmental disabilities to understand their perspectives on their health status, health promotion behaviors, and health care services they receive. The majority of participants reported good to excellent health, and all had some form of medical insurance. However, participants reported notable gaps in dental and reproductive health care and age-specific cancer screening. Some adults had good access to medical care, particularly those with a family member or friend who served as their health advocate. Some adults had a sound understanding of their health and health care needs. Program and policy implications are discussed and recommendations are presented to ensure adequate health care for adults with disabilities, including health advocacy training for caregivers.
A substantial and growing body of research suggests there are significant disparities in the health and health care access of adults with developmental disabilities (e.g., Horwitz, Kerker, Owens, & Zigler, 2007; Parish & Saville, 2006; Rimmer & Braddock, 2002; U.S. Department of Health & Human Services [DHHS], 2002). However, very little data have been collected directly from adults with developmental disabilities; thus, their perceptions of their health care are largely absent from the literature. This omission represents a critical and glaring deficit because understanding patients' perspectives is a defining feature of every serious health promotion intervention for all populations who are the intended targets of public policy initiatives.
Review of the Research
Health and Adults With Developmental Disabilities
Most adults with developmental disabilities are not “sick,” nor do their disabilities equate with “ill health.” Rather, it is genetic composition, lifestyle, and the lengthening of the lifespan of adults with developmental disabilities that are the major factors determining their health risks (Beange, 2002). This population has a high prevalence of chronic illnesses and secondary conditions, such as thyroid disease, osteoporosis, cardiovascular problems, respiratory infections, gastroesophageal reflux disease, dental and oral hygiene problems, and behavioral health problems (Rubin & Crocker, 2006). In addition, many individuals with developmental disabilities have poor nutrition and sedentary lifestyles that lead to a high prevalence of obesity, with its added cardiovascular risk (Rimmer & Braddock, 2002). Because of their coexisting health conditions, many take numerous medications, increasing the risks of adverse side effects and harmful drug interactions (Horwitz, 2000).
A primary consideration in understanding the health of adults with developmental disabilities is their elevated rates of mental illness. Credible estimates posit that at least one third of the people with developmental disabilities have psychiatric disorders or mental illnesses, which is a substantially higher rate than that of the general population (Stuart, 2007).
The U.S. Surgeon General's report, Closing the Gap: A National Blueprint to Improve the Health of Persons With Mental Retardation (U.S. Public Health Services, 2001), concluded that meeting a number of specific goals could improve the health of adults with developmental disabilities. These goals apply to the entire population of individuals with developmental disabilities (Lollar, 2006) and include integrating health promotion into community environments, making health knowledge practical and easy to use, increasing the quality of health care, training health care providers regarding care for special populations, tying health care financing to improved health outcomes, and ensuring accessible health care.
Health Care Access
The Institute of Medicine (1998) defined health care access as receiving services in a timely way to achieve the best possible health. Access includes both actual receipt of services and the potential for obtaining appropriate health care services (Aday & Andersen, 1981, 1984). An array of indicators is typically used to measure the multifaceted construct of access, including medical and dental insurance coverage, having a usual medical care provider, frequency of doctor and dentist visits, and receipt of recommended preventive care and screenings, such as flu shots and gender-specific screenings such as mammography and Pap smear tests for women and prostate-specific antigen (PSA) tests for men (DHHS, 2000). For the general (nondisabled) population, having the potential for health care, especially a usual source of care and health insurance, is a robust predictor of receiving appropriate, timely care (DHHS, 2000).
Adults with developmental disabilities face unique challenges to accessing quality health care. Deinstitutionalization has resulted in more adults with developmental disabilities living in community settings and receiving care from community providers. However, few community-based, primary care physicians are adequately trained to work with this population, and there are few educational resources available for physicians that address the special needs of individuals with developmental disabilities (Messinger-Rapport & Rapport, 1997). Furthermore, most primary care physicians serve a small number of people with developmental disabilities and, therefore, have greater difficulty building expertise with this population (Messinger-Rapport & Rapport, 1997).
Providers' attitudes regarding the health care needs of adults with developmental disabilities are another likely deterrent to health care access. In addition to having insufficient training, health care providers may be reluctant to work with these adults because their conditions often involve multiple disorders and are typically complex compared with the nondisabled population (DHHS, 2002). Providers may be either unaware of, or overwhelmed by, the complex nature of the health care needs of adults with developmental disabilities. Unfortunately, some providers are reluctant to provide care because they hold pejorative or discriminatory attitudes about these individuals and their quality of life (DHHS, 2002). In addition, the physical location of community care practices and the equipment used by the practices may be inaccessible to adults with mobility or sensory impairments.
Access to care may also be influenced by the type of setting in which a person with developmental disabilities resides. Recent research has reported that although adults with developmental disabilities living at home had similar health indicators as the general adult population, they were significantly less likely to receive preventive health care than their counterparts residing in community care facilities (Lewis, Lewis, Leake, King, & Lindemann, 2002). This finding may be related to the fact that community care facilities are typically required to provide or secure health care as part of their licensing, accreditation, or Medicaid certification requirements. Although preventive care was found to be less adequate for adults living at home, preventive services were also insufficient for residents of community care facilities. Lewis and colleagues (2002) reported that even though nearly all their study participants had a primary care physician, more than half were not protected from tetanus, nor had they received an influenza vaccine in the last year. These findings suggested that even when adults with developmental disabilities have a primary care physician, they still may not receive clinically indicated preventive care.
Preventive care pertains to the presymptomatic health services an individual receives to delay, defer, or entirely avoid developing disease or illnesses. Preventive care is thus distinguished from acute care, which is provided when an individual is ill or has symptoms. Preventive care is widely regarded as an efficient way to deliver health care and promote wellness. Standardized preventive care guidelines in the United States are developed from systematic reviews of the existing empirical evidence by the U.S. Preventive Services Task Force. Typical preventive care services include annual influenza shots, routine health checks, and clinically recommended medical screenings for diseases such as cervical, prostate, breast, and colon cancer (U.S. Preventive Services Task Force, 2006). In addition, providers often offer patients education and resources promoting well being, which is an important aspect of preventive health care.
Receiving preventive care can be a challenge for adults with cognitive limitations. The research literature provides some evidence that women with developmental disabilities have received inadequate preventive health care, specifically in obtaining Pap smears and breast examinations. In four studies in which researchers examined these services, women with developmental disabilities were less likely than nondisabled women to have received routine screenings for breast and cervical cancer (Havercamp, Scandlin, & Roth, 2004; Kopac, Fritz, & Holt, 1998; Lewis et al., 2002; Parish & Saville, 2006).
In the only one of these studies conducted with a nationally representative sample of women living in the community, Parish and Saville (2006) found that neither having health insurance nor having a usual source of care were associated with receiving care when needed. In contrast with nondisabled women, those with cognitive limitations were less likely to have received Pap tests and mammography; however, the women with cognitive impairments were more likely to have received flu shots. These findings are consistent with previous researchers who found that, in contrast with nondisabled women, those with disabilities do not receive all recommended reproductive care (Altman, 1997; Parish & Huh, 2005).
Although the reasons for this poor pattern of preventive care remain unclear, the causes may be related to the pejorative attitudes society still harbors regarding the sexuality of women with developmental disabilities (Brown & Gill, 2002). Some medical professionals maintain the attitude that women with disabilities are asexual and, therefore, exempt from the need for these crucial preventive screenings (Brown & Gill, 2002; Havercamp et al., 2004).
Health care providers who offer Pap tests to women with developmental disabilities often do not effectively explain their procedures nor adequately obtain consent to touch the women before conducting the exam (Brown & Gill, 2002). Broughton and Thomson (2000) found that women with developmental disabilities concurred that they experienced stress and pain during Pap test procedures. Messinger-Rapport and Rapport (1997) found that women with developmental disabilities often felt threatened by clinics and examination rooms and, therefore, were likely to be agitated and frustrated by their experience.
Annual Pap tests are recommended for women beginning at age 21, or earlier if they are sexually active (U.S. Public Health Service, 2006). Women with developmental disabilities should similarly be screened for breast cancer as outlined by the U.S. Preventive Services Task Force (2006), which recommends mammograms every 1 to 2 years for all women aged 40 years and older. Furthermore, women with developmental disabilities are potentially at elevated risk of breast cancer than other women because the risk of breast cancer is higher in women who have not been pregnant (Hulka & Moorman, 2001), and women with developmental disabilities have lower fertility rates than nondisabled women, although research on this issue is limited (Servais, 2006). It is likely that their fertility rates are lower because of ongoing restrictions on the free expression of their sexuality and rules in residential and vocational settings that prohibit sexual intercourse (Block, 2002; McCarthy, 2002).
It is unknown if this pattern of poor preventive care extends to males with developmental disabilities given that no research has been conducted on the receipt of PSA testing for men with developmental disabilities. The lack of attention to this issue is a critical concern because the increased longevity of men with developmental disabilities puts them at heightened risk for developing prostate cancer.
Good oral health is important for a variety of reasons, not the least of which is that oral infections can be indicators of more serious health conditions (DHHS, 2000). There are strong associations between poor oral health and chronic diseases such as diabetes, cardiovascular disease, osteoporosis, and respiratory disease (Horowitz et al., 2000). Severe periodontal disease resulting in tooth loss has been shown to be a risk factor for both esophageal and gastric cancers (Horowitz et al., 2000).
Unfortunately, individuals with developmental disabilities are at a higher risk than others for developing dental problems. There are a variety of reasons for this situation, including difficulties in eating and diets and medications that are harmful to oral health and difficulty on the part of the person to care for his or her oral hygiene needs (Pearlman & Sterling, 2006).
Nonetheless, if access to community-based medical care is problematic for adults with developmental disabilities, access to community-based dental care may be even more challenging. Most community dentists have little, if any, training or experience with individuals with developmental disabilities. Frequently, extra time is needed to perform their examinations and provide needed care. Individuals with developmental disabilities are often frightened of the dental appointment and may loudly make their anxieties known, which can be troublesome and disturbing to dentists, staff, and other patients. In addition, many adults with developmental disabilities receive Medicaid, and many dentists are reluctant to accept Medicaid patients based on reimbursement schedules that are perceived as insufficient (Farsai & Calabrese, 2002; Glassman, 2003; Grant, Carlson, & Cullen-Erickson, 2004).
Aging, Health, and Health Care Access
Individuals with developmental disabilities are living far longer than ever before. By 2000, the population of adults with developmental disabilities who were 60 years or older was estimated at approximately 641,000 (Service et al., 2006). It is anticipated that there will be a threefold increase in the number of adults with developmental disabilities ages 60 years and older by 2020 (Service et al., 2006).
Aging adults with developmental disabilities experience health problems similar to those of the general population of individuals who are aging (Kapell et al., 1999; Service et al., 2006). In addition, aging adults with developmental disabilities seem to experience a unique set of problems. Studies have shown older adults with developmental disabilities have higher rates of arthritis, deafness, urinary incontinence, immobility, cardiovascular disease, and hypertension than other groups (Cooper, 1998). An investigation of aging adults with Down syndrome found an increased frequency of sensory impairments, thyroid disorders, and nonischemic heart disorders compared with the general population (Kapell et al., 1998). Down syndrome is also associated with a shorter life expectancy and elevated risk of developing dementia compared with individuals with intellectual disabilities from other causes (Service et al., 2006).
Moreover, researchers have found that the health issues of the increasing number of older adults with developmental disabilities are different than the health issues of those who are younger or middle aged (Beange, 2002). Younger adults with developmental disabilities have an increased risk for sensory disorders; epilepsy; nutrition problems; gastrointestinal disease; dermatological disorders; neurological problems; ear, nose, and throat disorders; and congenital heart disease (Cooper, 1998; van Schrojenstein Lantman-deValk, Metsemakers, Haveman, & Crebolder, 2000).
In contrast to the increasing amount of research on the health problems experienced by adults with developmental disabilities, there has been little research on how health care differs among the aging population with developmental disabilities. This is an important gap in the literature on health and individuals with developmental disabilities.
Satisfaction With and Perceptions About Health and Health Care
On the one hand, the extent of a patient's satisfaction with care has been found to predict both health care access and health outcomes (DHHS, 2000). However, barriers to receipt of satisfactory care occur at the level of the encounter between the clinician and the patient as well as at the level of the health care system. These barriers are especially significant for adults with developmental disabilities because of their elevated need for health care that increases the extent of interaction with all aspects of the health care system (Iezzoni, McCarthy, Davis, Harris-David, & O'Day, 2001).
On the other hand, limited information has been collected directly from people with developmental disabilities themselves, so we know little about their perspectives about their health or health care. Therefore, this critical gap necessitates an indepth understanding of the health status and health care received by people with developmental disabilities that is gathered from their own point of view (Larson, Anderson, & Doljanac, 2005). The existing research on health, health care access, and quality of care from the perspective of individuals with disabilities is extremely sparse; very few studies exist that have made direct inquiries to adults with developmental disabilities asking about their indepth experiences with and impressions about the care they received. One nationally representative study examined women's satisfaction with health care (Parish & Saville, 2006) and found that, compared with women who did not have disabilities, women with intellectual limitations were significantly more likely to report being dissatisfied with their care. However, more studies of this type, and especially studies that go beyond simply asking people about their satisfaction with care, are sorely needed. In addition, although analyses of men's perceptions of their health care have not been reported in the literature, the present study suggests that their experiences with and perceptions of care are likely to be critical variables that affect the health care of the male adult population with developmental disabilities.
A recent systematic review of the scientific evidence on access to health care for adults with intellectual and developmental disabilities concluded that studies on barriers to health care access from the perspective of consumers with developmental disabilities and their families are a top-priority research need because of the likely differences in how people with developmental disabilities appraise their care (Larson et al., 2005).
Last, an ongoing trend in health care emphasizes increased partnership between patients and care providers; patients are routinely expected to collaborate with providers in making decisions regarding their health care (U.S. Preventive Services Task Force, 2006). These models of patient involvement in personal health care decisions are consistent with values expressed in other aspects of the developmental disabilities service system, particularly self-determination and consumer-directed supports. However, the extent to which it is possible to engage adults with developmental disabilities in decisions affecting their health care is thus far not known.
We solicited indepth, experiential information directly from adults with developmental disabilities to address the following questions: (a) What is their health and wellness status; (b) what health care services do they receive; (c) are they receiving age-and gender-appropriate preventive screenings; and (4) who arranges for and coordinates the health services they receive?
We conducted seven focus groups during the first 6 months of 2007. Focus groups were used for this study for two primary reasons. First, it was our goal to efficiently learn about the perspectives from as many people as possible, and focus groups enabled us to collect information from multiple people in a single session. Second, focus groups may be particularly useful for gathering information from adults with developmental disabilities, because focus groups can often be successful in creating a comfortable discussion environment where participants who may be having similar experiences can feel at ease being one of a group instead of feeling individual scrutiny (Stewart, Shamdasani, & Rook, 2006). The focus groups were conducted in several locations across North Carolina. Following each focus group, we collected supplemental data via follow-up telephone interviews. The study protocol was approved by the research team's university-based Institutional Review Board.
To recruit participants for the focus groups, project staff worked with the directors of public and private organizations that provide services to adults with developmental disabilities, advocacy groups, community centers, senior centers, and other agencies in both urban and rural locations throughout North Carolina. We asked the directors to solicit participation in the focus groups by adults with developmental disabilities who met our inclusion criteria, and we requested that the directors host one or more focus groups at their facility. The directors assisted with recruitment by distributing information to potential participants that informed the latter about the study and our objectives. Directors also informed potential recruits that attendees would receive $25 to thank them for their participation. The directors had no responsibility for securing health care for participants.
To participate in the study, individuals had to meet the following criteria: (a) have a developmental disability, (b) be 21 years or older, (c) not have a legal guardian or conservator, and (d) be able to speak English. Thirty individuals with disabilities participated in the seven focus groups. Table 1 delineates the sample characteristics and shows that the sample was approximately evenly divided between adults under age 40 and adults 40 years and older, Blacks and Whites, and those who lived in rural and urban locations. Half of the participants lived at home with family members (which included parents, siblings, or intimate partners), and most individuals reported a primary diagnosis of mental retardation. More men than women participated.
Follow-up telephone interviews (n = 29; 97%) were conducted to collect confirmatory or supplemental information about the 30 focus group participants. Slightly more than half of the interviews (n = 15; 52%) were conducted with focus group participants and slightly less than half (n = 14; 48%) were conducted with a family member, friend, or support person. We were unable to reach the 1 remaining focus group member or a support person for this individual. Data reported in Table 2 is based on the telephone interviews, and percentages are calculated based on 29 follow-up interviews (or fewer, if the individual did not respond to an individual question).
The seven focus groups consisted primarily of adults with developmental disabilities. In addition, several of the focus groups also included a few family members and support individuals who attended to assist with communication. On two occasions, the director of the facility that hosted the focus group also attended. A research assistant transcribed the audiotapes.
Project staff drew from a comprehensive review of the research literature to design the focus group interview guide that addressed seven topics related to our research questions: overall health status, specific health conditions, health promotion behaviors, risk and health-promoting factors, access to medical care, access to dental care, and access to mental health care. A project staff member facilitated all focus groups, helped by a research assistant.
Prior to conducting the focus groups, the interview guide and overall protocol were tested at an employment site. The guide was revised based on the pilot test responses and participants' comments, during which we found that some of the focus group questions were better suited to being asked during the individual follow-up interviews. Other than modest clarification of some questions, the interview guide did not change significantly subsequent to the pilot test. Data from the pilot test are not reported here. Instruments are available upon request from the first author (S.L.P.).
Attendees provided written consent at the beginning of the focus groups and verbal consent at the outset of the telephone interviews. In addition, the focus group facilitator frequently clarified concepts and checked with participants during the focus groups to ensure they understood the questions.
Following the focus groups, telephone interviews were conducted. The telephone interviews addressed demographic information, living arrangements, receipt of medical and dental insurance, specific disabilities and secondary diagnoses, overall perception of health, numbers of visits to health care professionals, and current medications.
The focus group audio recordings were transcribed and entered into Atlas/ti (Scolari, 2000), a software program designed to support qualitative data analysis. The transcripts were examined according to themes and patterns that recurred among the different focus groups. In addition, attention was given to the range and diversity of participant experiences and perceptions. To ensure reliability, we compared the focus group data to the follow-up telephone interview data. In addition, immediately following each focus group, the focus group facilitator and the research assistant discussed and compared interpretations and analytic insights that had emerged during that group. The accuracy of all transcripts was verified by comparing the transcripts with the audiotapes.
One member of the research team, with extensive experience in qualitative data analysis, developed the coding scheme to identify the themes and patterns that emerged both from the focus group transcripts and interview data (Glaser & Straus, 1967). First, she examined all of the focus group data, together with each of the associated interviews. Next, she developed the coding scheme independently to code one randomly selected focus group. Then, she met with another member of the research team to revise and finalize the coding scheme. Using the finalized coding scheme, she then recoded the transcript she had already coded and coded the remaining transcripts.
Simple descriptive analyses were conducted with the data gathered from the telephone interviews. These analyses included describing the participants' demographic characteristics (Table 1), their health, health care access, and patterns of health care use (Table 2). All analyses were performed with SPSS 14.0 (Norušis, 2006).
Table 2 summarizes the information collected about participants' health and the most frequently reported secondary health conditions. The table also presents the results of our telephone interviews related to the participants' health care access. Our findings are organized into the following themes related to the research questions: health and wellness, access to primary health care, preventive health care, access to behavioral health care, access to dental care, income and insurance, aging, health-promoting behaviors, and health care advocacy.
Health and Wellness
The majority of participants (n = 25; 86%) reported good or excellent health. However, 29 of 30 participants reported having at least one secondary condition. Consistent with previous research, mental illnesses and behavioral and emotional problems were the most commonly reported secondary conditions. These reports were in line with previous research that found that psychiatric disorders occur among adults with developmental disabilities at a substantially higher rate than among the general population (Stuart, 2007).
In addition, and consistent with previous research (Beange, Lennox, & Parmenter, 1999; Lott et al., 2004), the focus group participants reported high-use rates of prescription medications. Nearly a third of the participants reported taking at least one psychotropic medication. Only about one fourth of the sample reported taking no medications.
Access to Primary Health Care
The majority of interviewees reported having a primary health care provider that they saw for routine care, with most reporting seeing their health care provider at least once annually for a medical examination. Not surprisingly, individuals with complex health conditions reported seeing their health care providers more than once a year. For example, Erica, a 49-year-old participant who had childhood polio that resulted in lower mobility problems and who also has high blood pressure, commented on her health care access:
At the beginning when I was having problems with my blood pressure, I was going to my primary care physician every three months. She was following me up, but now I am learning to control my stress and so I see her basically once a year for an annual check-up, unless something happens.
In addition to developmental disabilities, Erica's husband, Michael, had congestive heart failure and high blood pressure. He also reported seeing the same primary care physician more than once a year. As a result of many years of living with impairments, Michael knew precisely how often he wanted to see his doctor as well as what he wanted from each visit.
I see her about every 6 months unless something comes up. Basically, I've done it for so long, she more or less listens to me ‘cause I know my body better than anybody—so she listens to me to know what's going on.
Cheryl, a 28-year-old woman with Down syndrome, and Mark, a 34-year-old man with developmental disabilities who is Cheryl's fiancé, also go to their doctor once a year. Both Cheryl and Mark emphasized the importance of seeing their primary care physician at least once a year. Mark commented,
My problem is, and I'm trying to get better at this, I only go when I'm sick. I'm trying to get better and make it a routine, like say okay, my birthday is coming up, so I try to say that's a good time to just have one month in mind. My birthday's in April, so I try to figure out, okay every April I'm going to make an appointment to go see her for a check-up.
We found that people from both rural and urban areas seemed to have similar access to health care. Although other research findings have suggested that adults with developmental disabilities who live at home with their families have less access to health care than their counterparts who live in other settings (Lewis et al., 2002), this finding was not supported by our investigation. Among our sample, neither the type of residential arrangement nor the geographic location (i.e., urban or rural) appeared to be related to primary health care access.
Preventive Health Care
Study participants discussed specific preventive health care services they received during their medical visits. Many participants reported receiving blood tests for cholesterol levels, immunizations for influenza, and blood pressure checks. A typical comment was provided by Mary, a 22-year-old woman with Down syndrome and thyroid dysfunction:
I have a physical check-up every year. They check my thyroid, do my blood work, and give me flu shots, and things like that. Also, I take Lipitor so I am checked for that every 3 months or whenever.
Echoing Mary's experience, other interviewees underscored the frequent preventive procedures they received from their health care providers. A number of participants with high blood pressure reported receiving blood pressure monitoring from their primary health care provider several times a year. Several female participants spoke of receiving Pap tests; however, other women said they were too frightened to receive the Pap test regularly. Peggy, a 28-year-old woman with Down syndrome described her fears: “I hate Pap smears. They pinch when they are inside of you. I kick and scream when I have to get them.”
Despite the prevalence of routine health care among the study sample, there was almost a total absence of mammograms among the women and a total absence of PSA tests among the men. This finding is consistent with the majority of the research literature. The U.S. Food and Drug Administration has approved PSA tests along with digital rectal exams to help detect prostate cancer in men aged 50 years and older, and the standard of care recommends that women 40 years and older receive mammograms every 1 to 2 years (U.S. Preventive Services Task Force, 2006). Nevertheless, only 1 woman reported receiving a mammogram regularly and none of the men aged 50 or older reported receiving a PSA test.
Access to Behavioral Health Care
Although there was a general reluctance among interviewees to share information about behavioral problems, several participants' comments indicated the presence of such problems. A few participants reported a specific problem or reported a diagnosis. Furthermore, in the telephone interviews, about one third of the sample reported having mental illnesses or behavioral problems. During the focus groups, Nate, a man with an intellectual disability, reported:
Oh boy. Ha-ha. Well, I'm sort of like in the category of mental health. I suffer from extreme violent disorder and I only went to the [psychiatric] hospital once. I suffer from really severe panic attacks which definitely would require some, you know, help.
Other participants or their caregivers mentioned psychiatric hospitalizations. An indication of similar problems was made by participants who mentioned medications they were taking for various behavioral or psychiatric conditions. Notably, one third of the sample reported using psychotropic medications. The research literature has demonstrated that adults with intellectual and other developmental disabilities face extensive barriers in accessing behavioral health care, and overreliance on psychotropic medications is a concern for this population (Holden & Gitlesen, 2004). This concern was borne out by the fact that, despite their reports of psychiatric and behavioral concerns or taking psychotropic medications, most participants indicated that they did not have a relationship with a mental health clinician.
Access to Dental Care
Numerous participants spoke of not having a regular dentist or reported that they had not seen a dentist in several years. Rachel, a woman in her 20s with an intellectual disability said, “I go to a dentist but I haven't been in awhile.” Her father, present at the focus group, added, “I guess it's been 4 or 5 years.” Bert, a young man, described his dental care as follows:
I go to the dentist every once in a while, when I have to have my teeth worked on. Ever since I go to the dentist, everybody tells me I have perfect teeth. They're perfectly straight. I have no cavities whatsoever. I mean there was times where my gums be black and stuff but I still have perfect teeth … I guess I go to the dentist maybe every few years just to make sure I don't got no cavities.
Bert's comments regarding seeing a dentist every few years were supported by nearly all participants, and inadequate access to dental care was a consistent and troubling finding across the focus groups. It appears likely that inadequate dental care was related to a lack of dental health insurance coverage as described in the next section.
From our study, Murray, a man in his 50s with an intellectual disability, reported discovering this problem when he tried to make a doctor's appointment: “I can't find no doctor to give me the proper treatment, you know. I'm in a lot of pain and don't know what to do. Not many doctors take Medicaid. And after trying some, I didn't bother no more.”
Although the state's Medicaid provides dental care coverage for most adult recipients, very few dentists actively participate (North Carolina Institute of Medicine, 2005). Among our focus group participants, the individuals who had Medicare or private health insurance did not have dental insurance. This gap in coverage was illustrated by Erica, who explained why she asked her primary care provider to pull two of her teeth:
Last year I saw my doctor to have two of my teeth removed. I don't have regular problems with my teeth, but last year I did and my doctor recommended that I go and see a dentist. But we don't have dental insurance and the dentist costs too much money.
In short, dental care for the focus group participants was less than adequate.
Aging, Health, and Health Care Access
We found few differences in the health conditions and health-promoting behaviors between the younger and older adults in our focus groups. Katherine (59 years) said, “I have no health problems whatsoever.”
Arthur (age 44) said, “I have high cholesterol, but it's controlled with medication.”
Sara, a 49-year-old woman with lower mobility impairments, described her eating and exercise routines:
I made up my mind in 2007 to lose some weight. And I'm losing. Just by controlling what I'm eating. I eat a lot of vegetable, stay out of meat, I eat fish. And I try to eat proper in the morning, yogurt, or something else light. Plus, I have been doing yoga, stretching, and swimming.
In contrast, where we expected to find differences, such as age-related preventive screening, we found few. As previously noted, 1 of the 5 women aged 40 years or older reported receiving mammograms regularly, and none of the 5 men who were 50 years or older reported receiving PSA tests. Given these findings, the possibility that large numbers of aging adults with developmental disabilities are not receiving age-related preventive screenings warrants more investigation.
In general, reports in the research literature have noted that adults with developmental disabilities tend to have several adverse lifestyle behaviors that are associated with sedentary lives, such as overeating, poor nutritional practices, and smoking cigarettes. However, most interviewees in our focus groups reported knowing the importance of a healthy lifestyle, including good nutritional practices, engaging in regular physical activity, controlling their weight, abstaining from smoking, and using alcohol modestly or not at all. In addition, many participants reported practicing health-promoting behaviors. For example, Carol, a 28-year-old woman with developmental disabilities, described a recent weight-loss diet: “I eat pretty good. Recently I lost a lot of weight. I was a little bit heftier than I am now, but I recently lost some weight.”
Bert, a 30-year-old man with an intellectual disability, said,
I was overweight at one time, but you know, I started cutting back on junk food. So I started drinking a lot of water, lifting weights every day, running, trying to keep my health up for Special Olympics this year and, uh, just trying to stay healthy and just drink more water and stuff.
Many participants mentioned that they tried to exercise on a regular basis, although, like the majority of adults without disabilities, they were not always successful in maintaining an exercise regimen. The most commonly reported exercise was walking. One woman with a respiratory condition said, “I try to walk about 30 minutes a day.” Another woman reported, “I try to walk twice a day for about 20 to 30 minutes. I walk outside on my group home parking lot.”
Several participants spoke of other forms of exercise, including golf, basketball, yoga, swimming, and bowling; however, the frequency and extent of their participation in these activities were unclear. Several adults reported participating in the Special Olympics. Other interviewees spoke of participating in physical health activities sponsored by local community organizations, and others reported exercising independently.
No participant acknowledged drinking alcohol frequently or in large quantities, although several participants admitted they smoked cigarettes. Overall, individuals participating in the focus groups seemed to have received and heard health promotion information. However, it should be noted that a desire to appear compliant with good health practices within the focus groups might have biased individuals' reporting.
Health Care Advocacy
The ability of adults with developmental disabilities to access needed health care is crucially important. In many cases, participants demonstrated being highly capable of maintaining good health and obtaining health care. Michael summed up his ability succinctly, “I learned the hard way to stay healthy. I had a heart attack back in the 1990s so I learned how to totally avoid stress. My attitude now is to always do my best. Once I've done my best, then I leave it alone and don't worry.”
However, not all adults with developmental disabilities are as independent as Michael. One of the most important issues that emerged from our interviews was the usefulness of an advocate in accessing health care for adults with developmental disabilities who could not sufficiently access or navigate the system by themselves. These advocates, whether a family member or other caregiver, helped the adult with developmental disabilities maintain good health by (a) promoting positive health habits, (b) being aware of when health care was needed, (c) maintaining knowledge of what providers were available in the community, (d) knowing how to make appointments and access care, (e) advocating for the individual with developmental disabilities during appointments, and (f) communicating the aftercare recommendations to the individual in a clear and comprehensible manner.
It was clear from the interviews that health advocates filled a critical need for some adults with developmental disabilities, in particular those who had problems with communication or comprehension. For example, Andy, who has an intellectual disability, lives with his brother who serves as Andy's health care advocate and who related the following comment on that role:
I can recall an instance where the doctor says, “Does Andy eat any junk food?” Cause he wanted him to drop a few pounds. And I said, “Yeah he eats junk food sometimes.” And the doctor looks at me and he says, “He's not a trash can. Don't feed him junk food!” So, I've been constantly changing it, I've got the fruit, trying to get the fruit in, what's it eight servings of fruit and vegetables per day—raw fruit and vegetables?
This research represents one of few investigations that have examined the health and health care access of adults with developmental disabilities from their own perspectives. Obtaining personal perspectives is particularly critical not only to gauge satisfaction with care but to understand the personal experiences of these individuals. Neither of these issues have been adequately examined in the research.
Several study limitations must be considered to fairly interpret these findings. The experiences of the 30 adults with developmental disabilities in our sample cannot be perceived to represent the experiences of all adults with developmental disabilities. Although the sample was racially mixed, with nearly equal numbers of Black and White participants, we lacked the resources to conduct focus groups in Spanish, and, therefore, Spanish-speaking individuals were excluded from our sample. Understanding the health care of Latino adults with developmental disabilities is an important direction for future research, particularly given the growing Latino population. Unfortunately, our sample did not include Asian American participants either, and remedying this deficit is an important direction for future research.
Our sample likely underrepresented individuals with severe impairments, as individuals who could not communicate were excluded. As such, these individuals' experiences are not reported here, and future researchers could fruitfully examine the health care of this group. Severity of impairment is likely to have a significant impact on health care experiences.
Another limitation was that there was no reliable way for the project team to ascertain the quality of health care that individuals received or the appropriateness or adequacy of reported medications. In addition, we could not assess the quality of treatment prescribed by mental health clinicians or whether the psychotropic medications were overprescribed for the sample, which, as reported in the research literature (e.g., Lewis et al., 2002), is a concern for this population.
Research with the general population has consistently found that people do not accurately report their high-risk health behaviors or their activities related to health promotion (Newell, Girgis, Sanson-Fisher, & Savolainen, 1999). Therefore, participants may have underreported their engagement in risky health behaviors.
In some cases, caregivers provided some data in the focus groups, and about half of the follow-up telephone interviews were conducted with caregivers to clarify the information obtained in the focus groups. However, we were primarily interested in understanding the experiences of adults with developmental disabilities from their unique and personal vantage points. In situations where it was necessary to interview a proxy, we felt that this outcome was better than not obtaining the data at all. The most frequent use of proxy reports was in the collection of demographic data and information related to specific health conditions.
Last, there are limitations inherent to the focus group methodology itself. Data generated from this method are not representative of the larger population from which the sample is drawn. Although we endeavored to encourage participation from a wide variety of adults with developmental disabilities, we cannot claim that the experiences of these individuals are typical. However, the use of focus groups is absolutely warranted. Focus groups provide an excellent way to gather indepth data and to capture the nuances of personal experiences. Furthermore, given the dearth of research that exists related to our research questions, exploratory research is imperative, and this method is exceptionally well-suited to that task (Stewart et al., 2006).
Our study can inform policy and practice changes to improve the health and wellness of adults with developmental disabilities. We present specific recommendations for each major category of our findings.
First, we found that some adults appeared to have good access to medical care, particularly those with a family member or friend who served as their health advocate. As such, we recommend that health advocacy training should be made available to family members and other informal (unpaid) care providers of adults with developmental disabilities. We acknowledge that the health advocate concept has certain limitations, such as how the training and such a service would be financed. However, we feel that health advocates hold much promise for this population, because of their potential to serve as a bridge between care providers and the person with developmental disabilities, influencing and informing both.
The objective of this training would be to teach unpaid caregivers how to take an active role in advocating for both acute and preventive health care services for their loved one with disabilities. Such training could fruitfully build on a recent intervention that has been developed with this specific objective (Moss et al., in press). Health advocates should be trained to know when (a) to make medical appointments, (b) to assist during medical encounters (e.g., helping with communication, handling the person's fears and anxieties, dressing and undressing for the appointment), and (c) to assist in the home (e.g., monitoring changes in health status, communicating aftercare recommendations to other caregivers in the home).
We also recommend that family members and other unpaid caregivers who serve as health advocates receive compensation for their training and for their participation in person-centered planning teams. Effectively monitoring the health and health care of an individual with developmental disabilities is time consuming and challenging. We suspect that health advocates who are compensated for their time will be able to devote greater attention to their charge. Although we acknowledge that this compensation may be difficult in today's fiscal and organizational climate, it is nevertheless imperative to ensure adequate health care for persons with developmental disabilities.
We also recommend that person-centered planning teams or other treatment teams carefully evaluate an individual's receipt of health care, particularly the receipt of care according to established clinical guidelines. Case managers should receive training to ensure that they can competently lead such evaluations.
A second significant finding of our study was that older adults with developmental disabilities reported not receiving several preventive screening tests. Therefore, we recommend that trained health advocates, as mentioned previously, should understand how preventive care recommendations change as people age. These advocates should work collaboratively with case managers, who should carefully assess the extent to which the individual with developmental disabilities is receiving all age-appropriate preventive care (e.g., mammography, PSA tests, flu shots, and colonoscopy). Moreover, it is imperative that additional research be conducted to better understand prevalence rates of age-appropriate preventive screens received by older adults.
Our third significant finding was that adults with developmental disabilities did not receive adequate dental coverage, even if they had some dental insurance. Related to this lack of dental care, we first recommend that Medicaid reimbursement rates for dental care be increased. Meaningful increases might include the use of fee supplements to address the additional time that dentists need to spend with patients who have developmental disabilities. Furthermore, baseline increases to the Medicaid reimbursement rates for dental care are in order. North Carolina—the location of this study— increased its Medicaid reimbursement rates for dental care on January 1, 2007. Despite this increase, the state's rates are still well below the market average for the United States (American Dental Association, 2004). There is extensive evidence that increasing Medicaid reimbursement rates for dental care to more closely approximate dentists' full charges increases service use (U.S. General Accounting Office, 2000).
We also recommend that dentists receive training in working with adults with developmental disabilities. There is evidence that dental students do not receive sufficient training to work effectively with this population (Fenton, Hood, Holder, May, & Mouradian, 2003; Wolff, Waldman, Milano, & Perlman, 2004). State policymakers should work closely with dental schools to implement such training as well as provide continuing education opportunities on this topic.
Consistent with previous research (Frey, Szalda-Petree, Traci, & Seekins, 2001), we also found that reported secondary conditions for adults with developmental disabilities of mental illnesses or related emotional and behavioral problems were common. As such, we recommend that treatment or person-centered planning teams should comprehensively evaluate and address the behavioral health care needs of individual service recipients. Such planning should examine crisis prevention strategies, behavior modification plans, and ongoing therapeutic needs.
Another recommendation related to this finding is that treatment or person-centered planning teams should regularly review an individual's use of psychotropic medications. A significant portion of our sample had been prescribed psychotropic medications, even when they did not report having mental illnesses or behavioral and emotional problems. Teams should work closely with prescribing physicians and evaluate the ongoing use of such medications. Although this is not a new idea, its importance should not be overlooked.
Our fifth finding was consistent with previous research: Women with developmental disabilities were not receiving Pap tests or mammograms at the clinically indicated intervals. Therefore, we recommend that treatment or person-centered planning teams should carefully monitor receipt of reproductive health care for women with developmental disabilities. Teams could assess the reasons the individual service recipient is not receiving such care, including fear or physician attitudes. There is evidence that women with excessive anxiety related to these exams can undergo procedures after being appropriately educated and treated kindly by the physician. If necessary, Pap tests can be conducted under sedation or with ultrasound (Grimes & Wallach, 1997).
In addition, there is evidence that physicians lack the training to meet the reproductive health care needs of women with developmental disabilities (Messinger-Rapport & Rapport, 1997). Therefore, physicians need to receive training in how to provide supportive and comprehensive reproductive care for women with developmental disabilities. Physicians need to understand that women with developmental disabilities are at similar risk for cervical cancer as nondisabled women, because they are living in the community and are often sexually active, with or without the knowledge of their care providers. Women with developmental disabilities should receive Pap tests at the recommended rate for nondisabled women (U.S. Preventive Services Task Force, 2006). Physicians also need to understand that women with developmental disabilities may actually be at elevated risk for breast cancer because they have lower childbearing rates than nondisabled women (Hulka & Moorman, 2001). Therefore, women with developmental disabilities should receive age-appropriate mammography.
Last, we found that some adults with developmental disabilities have a sound understanding of their health and health care. Given this finding, we recommend that adults with developmental disabilities receive training to become partners in their health care, as they are able. The knowledge and relative sophistication of those who demonstrate an understanding of their health care needs should be encouraged by offering opportunities to participate in appropriate training to build their knowledge about health, health promotion, and health care. Existing curricula that have been designed to train adults with developmental disabilities (e.g., Lunsky, Straiko, & Armstrong, 2002; Marks, Heller, & Sisirak, 2006) should be more widely implemented, and adults with developmental disabilities should receive support to facilitate their participation.
In summary, our study contributes to the existing knowledge about the health and health care of adults with developmental disabilities but from the vantage point of the adults themselves. Although we found evidence of inadequate health and health care, we also found evidence that could contribute to improved policies and practices for adults with developmental disabilities. The most important initiatives to pursue include (a) addressing the significant dental care gaps, (b) supporting the work of informal care providers who serve as health advocates, (c) expanding developmental disabilities–related training for physicians and dentists, and (d) using the existing strengths of treatment teams or person-centered planning teams and case managers to monitor and advocate for health care for adults with developmental disabilities.
We thank Diane Wyant at the University of North Carolina School of Social Work for her helpful comments on an earlier draft. We gratefully acknowledge the assistance provided by the adults with disabilities and their families who participated in the study. Partial support for this study was provided by the North Carolina Division of Mental Health, Developmental Disabilities, and Substance Abuse Services and the School of Social Work, University of North Carolina at Chapel Hill.
Authors: Susan L. Parish, PhD, MSW (email@example.com), School of Social Work, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599-3550. Kathryn Moss, PhD, School of Social Work and Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill. Erica L. Richman, MSW, School of Social Work, University of North Carolina at Chapel Hill