Individuals living with intellectual and developmental disabilities face complex medical problems. Primary care physicians tend to provide basic medical care, serving as a base through which other forms of care can be accessed. In this study we describe patterns of primary care utilization among adults enrolled on the Florida Medicaid's Home and Community-Based Services Waiver. About 40% of the adults on the Waiver did not see a primary care provider between 1999 and 2003. Primary health care utilization was higher in the northern parts of Florida and conversely lower in the southeast. The establishment of a medical home can ensure the timely receipt of preventive care as well as help coordinate the complex care that many individuals with disabilities need.
The latest prevalence estimates of intellectual disabilities show that between 1994 and 1995, there were about 3.9 million individuals with cognitive impairments living in the community in the United States. This represents about 1.5 million adults and about 2.4 million children (Larson, Lakin, Anderson, Kwak, & Anderson, 2001). Perhaps the most significant trend affecting individuals with intellectual or developmental disabilities is deinstitutionalization, or movement of care away from large state institutions to community-based settings. Between 1980 and 2005, the average daily population of large state facilities for those with intellectual disabilities decreased by 90,813 (69%) (Coucouvanis, Prouty, Bruininks, & Lakin, 2006).
With improved assistive technology and effective clinical and public health interventions, individuals with intellectual disability are living longer. Consequently, like the rest of the population, these individuals are increasingly facing chronic diseases, such as cardiovascular disease, cerebrovascular disease, cancer, and diabetes (Horowitz, Kerker, Owens, & Zigler, 2000). Further, like the general population, individuals with intellectual or developmental disabilities are also susceptible to the primary risk factors associated with these chronic diseases, such as obesity, little physical activity, and smoking. However, these chronic diseases place a different burden on this population. For example, individuals with Down syndrome who also have autoimmune abnormalities are at increased risk of cardiovascular disease, leukemia, respiratory disease, and diabetes (Horowitz et al., 2000).
Individuals with intellectual or developmental disabilities are also likely to suffer from illnesses and conditions that are unique to their disability. For example, among such children, the prevalence of seizure disorders is 16% to 30% in those with intellectual disability, 25% in children with cerebral palsy, and 25% in children with spina bifida and hydrocephalus (Alvarez, 2004; Batshaw & Perret, 1992). In comparison, less than 1% of the general population has epilepsy.
The high rate of primary and secondary health conditions underscores the need for persons with intellectual or developmental disabilities to have access to a medical home. Both the American Academy of Pediatrics and the American College of Physicians advocate for medical homes for children with special needs and for individuals with multiple chronic conditions (American Academy of Pediatrics, 1999, 2002; American College of Physicians, 2004). The medical home manages all aspects of an individual's care, including coordinating and assuring access to specialty services (American Academy of Pediatrics, 1999, 2002; American College of Physicians, 2004).
Often, the concept of a medical home is operationalized as having access to primary health care and is usually a primary care physician and their office staff. Primary health care providers are able to both identify problems requiring care from specialists and make referrals as well as follow established patients to ensure that the care they receive is sufficient to meet their social, emotional, and medical needs (Ferrer, Hambidge, & Maly, 2005). In addition, primary health care is considered to be a point of access for the entire health care system for the range of services needed by individuals throughout their lifespan, including preventive, acute, and chronic health care (Grumbach & Bodenheimer, 2002; Starfield, 1998). Access to primary health care is touted as a cornerstone of good quality medical care (Institute of Medicine, 1996).
Several researchers have noted that individuals with intellectual disabilities are confronted with a fragmented health care system, in which primary and specialty care resources are often poorly distributed and ill-equipped to meet their needs (Betz, Baer, Poulsen, Vahanvaty, & Bare, 2004; United States Department of Health, 2002). For example, those with intellectual or developmental disabilities may not receive appropriate preventive services, such as an influenza vaccine (Lewis, Lewis, Leake, King, & Lindemann, 2002), breast and cervical cancer screening, and oral health care (Havercamp, Scandlin, & Roth, 2004; Long, Coughlin, & Kendall, 2002). There may also be under-recognition of certain ailments among those with intellectual or developmental disabilities compared to the general population (Janicki et al., 2002) as well as barriers to the receipt of specialized services, such as speech therapy, nutrition, dental care, and behavior management (Betz et al., 2004). In addition, there is much discussion in the literature on the need for physicians and other clinicians who are knowledgeable and sensitive to the unique clinical and cultural needs of individuals with intellectual or developmental disabilities (Choi & Wynne, 2000; Liptak et al., 2006; Melville, Cooper et al., 2005; Melville, Finlayson et al., 2005; Reichard, Sacco, & Turnball, 2004; Reichard & Turnbull, 2004).
The evidence on the benefits of primary health care for the general population is fairly convincing; access to primary health care has been shown to be associated with greater use of preventive health care services (Bindman, Grumbach, Osmond, Vranizan, & Stewart, 1996; DeVoe, Fryer, Phillips, & Green, 2003), fewer hospitalizations (Gill & Mainous, 1998), and fewer emergency room visits (Gill, Mainous, & Nsereko, 2000). However, there are no analogous studies in which researchers examine primary health care utilization among those with intellectual or developmental disabilities. In fact, a report by the United States Department of Health and Human Services (2002) noted that there is a lack of population-based data on the health and health care needs of persons with intellectual disability. In the paper presented here we begin to build this knowledge base by describing the primary health care utilization among adults who were enrolled in Florida Medicaid's Home and Community Based Services Waiver (HCBSW) program for persons with intellectual or developmental disabilities.
Individuals qualify for the HCBSW by applying through the Florida Agency for Persons With Disability and having an intellectual disability, spina bifida, cerebral palsy, autism, Prader Willi, and/or familial dysautonomia. The HCBSW pays for services and supports to allow individuals with intellectual disabilities to live as independently as possible. Support services include personal care assistants to help with activities of daily living (e.g., bathing, grooming, eating), and vocational assistance. Those enrolled have a support coordinator to assist with access to habilitative services. Although all persons on the HCBSW also have regular Medicaid to pay for typical health care services, they receive no medically oriented care coordination or case management. Furthermore, there are no mandated health screenings or assessments offered to individuals in this program. For this reason, understanding the role of the primary health care provider is especially critical for this group of individuals.
For the over 23,000 persons on the Medicaid HCBSW enrolled during the 4-year period from 1999–2003, we created a comprehensive, longitudinal database of all health and health-related services paid for by the Florida Medicaid program. Our analysis is limited to the 16,810 individuals who were adults and were enrolled for the entire 4-year period.
We linked this utilization data to an eligibility database maintained by the Agency for Persons With Disability, whose eligibility files includes the following information: the person's primary disability diagnosis under which they qualified for the HCBSW (e.g., intellectual disability, cerebral palsy, autism, spina bifida), IQ index (normal IQ; mild, moderate, severe, or profound intellectual disability; or untested), demographic information such as gender, age, race/ethnicity, living arrangement (family home vs. other living arrangements), and the Florida Agency for Persons With Disability district where the individual resides. There are 14 districts across the state.
Definition of a Primary Health Care Visit
Each outpatient Medicaid claim is defined by a current procedural terminology (CPT) code, a unique provider ID, and the specialty of the provider delivering the service. An outpatient claim was categorized as a primary health care visit if a physician visit was coded with one of the CPT codes listed in Table 1. In addition, the provider type for the physician visit had to be one of the provider specialties listed in Table 1.
If the provider specialty type information was not available for a particular claim, it was filled in with information from other records by matching to the same provider ID. In instances where it was not possible to identify the specialty of the specific provider who delivered the service, provider specialty type was identified by the specialty of the practice to whom the claim was paid.
We conducted two types of bivariate analysis. First, using either a t test or an analysis of variance (ANOVA), we compared the mean number of overall physician visits and the mean number of primary health care visits across the various clinical and demographic characteristics included in the linked database. Then we examined the association between receipt of zero versus one or more primary health care visits (0, 1 variable) and the various clinical and demographic characteristics using the chi-square test. Finally, we used a logistic regression model to predict the likelihood of having a primary health care visit while controlling for age, gender, race, IQ level, qualifying disability, disability district, and living arrangement.
Between 1999 and 2003, 16,810 adults over the age of 18 were on the HCBSW for the entire time period examined (Table 2). The majority of the participants were male, White, between the ages of 25 to 44, and qualified for the HCBSW based on their intellectual disability. Most were diagnosed with either mild or moderate mental retardation. Slightly more lived at home with relatives as opposed to living in group homes, supported living, or other community-based settings. Individuals living in the most populous areas of the state, District 23 (Tampa/St. Petersburg) and District 11 (Miami-Dade), collectively, represented a little less than one third of the sample. Districts 1, 2, 3, 8, 14, and 15 are considered to be rural areas of the state of Florida and represent about 25% of the population under study.
Mean number of overall physician and primary health care visits
The mean number of total physician visits and primary health care visits per person per year is presented in Table 3. We also included a column that shows the mean number of primary health care visits among only those individuals with at least one primary care visit during the 4-year period.
The mean number of total physician visits is shown in the first column. On average, adult enrollees on Florida's HCBSW had 1.7 physician visits per year throughout the 4-year period. However, the mean number of physician visits varied by sociodemographic characteristics. For example, females averaged more visits than did males and the mean number of visits decreased with age. Across the geographic areas of the state (as defined by Agency for Persons With Disability program district), the mean number of physician visits ranged from 1.6 in District 23 (Tampa Bay/St. Petersburg) to 2.23 visits in District 11 (Miami-Dade). Among the major disability categories, those with spina bifida had the highest mean number of physician visits per year (3.43), whereas those with intellectual disability only had the fewest number of mean visits (1.51). Individuals living at home had fewer mean number of physician visits (1.46) relative to those in community settings (1.96).
The second column in Table 3 provides data on the mean number of primary health care visits by sociodemographic and clinical characteristics for the entire group, and the third column shows the distribution of primary health care visits only among those with at least one visit. In general, the patterns of distribution of primary health care visits mirror those for all physician visits. On average, this population had about one primary health care visit per year; and, as shown in the third column, among primary health care users, the mean number of primary health care visits per person per year was 1.8.
Of note is the variation in the mean number of primary health care visits across geographic regions. Among all beneficiaries, District 2 (Tallahassee and surrounding areas) had the highest mean number of primary health care visits per person (1.6), whereas District 10 (Ft. Lauderdale) had the fewest (.79). For several districts, the mean number of primary health care visits per person was less than one, suggesting that not everyone in that district had at least one primary health care visit. The districts in the rural areas were generally above the mean for average physician visits. Looking exclusively at those individuals with at least one primary health care visit (Column 3), beneficiaries in District 11 (Miami-Dade) had the highest number of primary health care visits per person per year (2.43) and District 8 (Ft. Myers and surrounding areas) had the fewest (1.40). The number of primary health care visits declined with age, and there was some modest variation across disability group, IQ index, and living arrangement.
Percentage without a primary health care visit
Table 4 shows the percentage of adults with and without a primary health care visit by sociodemographic and clinical characteristics. Overall, just fewer than 40% of the group went without a primary health care visit between 1999 and 2003. The percentage of individuals without a primary health care visit varied considerably across program districts, ranging from a low of 24% in District 3 (Gainesville and surrounding areas) to 52% in District 10 (Broward County). The percentage without a primary health care visit increased with age: about 35% of those between 18 and 24 did not have a visit compared to 43% of individuals age 45 years and older. Finally, there is variation in primary health care utilization across major disability group, IQ index, and living arrangement. Those with lower IQs were more likely to have a primary health care visit than those living at home with family by a substantial margin.
The logistic regression analysis predicting the likelihood of a primary health care visit generally confirms some of the trends noted in the descriptive analyses (Table 5). For example, females relative to males and Blacks relative to Whites were more likely to have had at least one primary health care visit per year throughout the 4-year period. Compared to District 23 (Tampa Bay/St. Petersburg Area) individuals living in Districts 1 (Panhandle), 2 (Tallahassee and surrounding areas), 3 (Gainesville and surrounding areas), 8 (Orlando), and 15 (Ft. Pierce) are more likely to use primary health care. Those living in Districts 9 (Palm Beach), 10 (Broward), and 11 (Miami-Dade) were less likely than District 23 (Tampa Bay/St. Petersburg Area) to have a primary health care visit. Younger persons relative to their older counterparts, and those who did not live with their families compared to individuals who did, were more likely to have had a primary health care visit. Compared to those with only intellectual disability as a qualifying diagnosis, individuals with intellectual disability combined with cerebral palsy, and those with spina bifida were more likely to have a primary health care visit. Finally, those with severe intellectual disability also had higher odds of using primary health care relative to individuals with other IQ levels.
This primarily descriptive paper was designed to describe patterns of access to primary health care by persons with intellectual and developmental disabilities in Florida. When looking over the 4-year period between 1999 and 2003 among continuously enrolled beneficiaries, we found that only 60% of enrollees visited a primary health care provider and 40% did not. On average, each person had approximately one primary health care visit per person per year. This estimate is somewhat lower than but in line with national estimates, which indicate that general adult population within the United States made about 1.3 primary health care visits per year (Forrest & Whelan, 2000). For those who accessed primary health care at least once, the average number of visits was 1.8 visits per year. However, given the relatively high prevalence of chronic health problems among adults with intellectual or developmental disabilities (e.g., cerebral palsy, spina bifida, and seizure disorders), the overall physician and primary health care utilization among these individuals is low.
The low rate of primary health care utilization may be a result of the constellation of barriers that persons with intellectual or developmental disabilities experience when seeking primary health care. First, health care providers, including primary health care physicians, may be reluctant to accept people with Medicaid or with intellectual or developmental disabilities as patients. Some of the reluctance could stem from lack of adequate training or experience in treating individuals with developmental or intellectual disabilities. In addition, provider reluctance could be due to inadequate compensation for the additional time that may be required to treat such patients. Moreover, few adult providers take Medicaid, the source insurance of the adults in our study. Persons with intellectual or developmental disabilities may experience problems securing public transportation to get to health care appointments, particularly in rural areas. Behavioral and communication difficulties may also limit appropriate access to care. Many adults with intellectual or developmental disabilities are unable to express or describe their symptoms, making it both more difficult and more time-consuming for providers to render care. Moreover, significant and unusual behaviors (e.g., rocking, making unusual sounds, repetitive hand-wringing) are common among persons with intellectual or developmental disabilities. These kinds of behaviors may be difficult for providers to accept if they are unaccustomed to them.
A number of solutions could be crafted to remove barriers to primary health care services for persons with intellectual or developmental disabilities. Provider reluctance to see these persons may be addressed through improvements in medical school training and continuing education curriculum so that practitioners have better skills to use in the management of their patients with disabilities. New curriculum would not only include strengthening their clinical ability, but would also make providers more sensitive to the cultural, communication, and social needs of their patients. Medicaid reimbursement for services should be increased to reflect the increased work of providing care to persons with multiple disabilities. Physician time and effort should be measured and adequately compensated.
Although people with an intellectual disability, as a result of programs such as Florida Medicaid's HCBSW, are increasingly living in the community, they receive little special accommodation in the health care system to meet their complex health care needs. Access to a primary care medical home would provide the supports they need to access health care. A critical element of the medical home would be nurse care coordination provided by nurses with expertise in the care of persons with intellectual or developmental disabilities. The nurse care coordinator can help gather information from the individual and their support network, thereby improving care and reducing the time required by the physician, and can facilitate referrals and other supports for the person with intellectual or developmental disabilities, leading to reduced barriers to other services. Nurse care coordinators have been critical for the provision of medical home services for children with special health care needs (Cooley & McAllister, 2004). Given the complex medical needs of individuals with intellectual or developmental disabilities, we believe that they would benefit significantly from nurse care coordination that provides supports in the health care system in similar fashion to the service coordination they receive in the habilitative service system. Model programs have demonstrated that increasing access to primary care physicians and providing nurse care coordination for this population can be cost-effective and result in positive health outcomes and increased patient satisfaction (Kastner & Walsh, 2006).
Our study revealed substantial geographic variation in primary health care utilization, even after controlling for key demographic and some clinical characteristics of the population. Primary health care utilization was higher in the northern parts of the state in areas that are predominantly rural. Conversely, primary health care utilization was lower in the southeast portion of the state in large urban areas. The geographic variation in primary health care utilization begs the question about what kinds of services are people getting—or if they are getting them at all. For example, are those who are getting less primary health care receiving relatively more specialty care and vice versa? Large urban areas are more likely to have academic medical centers and perhaps easier access to specialty care. However, our data would then indicate that specialty care is not making up for the deficit in primary health care. In rural areas there are fewer specialty physician services; therefore, the majority of physician services are provided by primary health care clinicians. In addition, rural primary health care physicians may be more receptive to caring for people with intellectual or developmental disabilities. Rural physicians generally have less access to specialty physician colleagues and therefore may be more comfortable caring for individuals with complex health conditions.
The low rate of primary health care utilization among people in the HCBSW is concerning and may be an indication that the health care needs for persons with intellectual or developmental disabilities, which exceed those of the general population, are not being adequately addressed. Almost one quarter of persons with intellectual or developmental disabilities has a diagnosis of seizure disorder (Harum, 2006), and for these individuals regular care is needed to appropriately monitor their health status and manage their medications. Individuals with cerebral palsy commonly have problems with constipation, gastro-esophageal reflux disease, spasticity, pain syndromes, and other issues. Regular comprehensive primary care in a medical home is important to address these issues and prevent other secondary conditions from developing. In addition, as in the general population, many are facing chronic diseases associated with aging (Horwitz, Kerker, Owens, & Zigler, 2000). Finally, not having a primary care visit may mean that these individuals are not receiving routine preventive care services (Lewis, Lewis, Leake, King, & Lindemann, 2002). Consequently, access to primary health care services is of immense importance to individuals with intellectual or developmental disabilities.
Study limitations include the reliance on Medicaid claims data to describe health care utilization. There could be problems associated with coding that we are unaware of. Furthermore, Medicaid claims only provide data on the provision of services paid for by the Medicaid program. We have no way of quantifying the receipt of additional services paid for by other insurance or out-of-pocket. In addition, claims data do not permit examination of the content of the primary health care visit. So, we cannot tell, for example, if the physician or clinician spent some time in care coordination activities.
Despite these limitations, our study provides some important information on primary health care utilization among individuals using Florida's HCBSW. Although this program provides supports for the coordination of social services, there is nothing comparable on the side of traditional Medicaid program for medical care services. Despite the high rate of medical conditions among individuals with intellectual or developmental disabilities, the general Medicaid program does not provide case management, systematic assessments, or additional supports to improve access to medical care services. Therefore, developing a system of primary health care to coordinate and facilitate access to specialty care is critical. Additional research is also needed to help elucidate the value of comprehensive primary health care services in the medical home for persons with intellectual or developmental disabilities.
Authors: Allyson Hall, PhD, Associate Professor (firstname.lastname@example.org), Department of Health Services Research, Management, and Policy, Florida Center for Medicaid and the Uninsured, University of Florida, PO Box 100195, Gainesville, FL 32610. David Wood, MD, Associate Professor, Department of Pediatrics, University of Florida. Tao Hou, MPH, Research Associate, Institute for Health Policy and Evaluation Research, Duval County Health Department, 900 University Blvd, North, Suite 604, Jacksonville, FL 32206. Jianyi Zhang, PhD, Statistician, Florida Center for Medicaid and the Uninsured, University of Florida, PO Box 100185, Gainesville, FL 32610