OBJECTIVE. The objective of this study was to determine whether the quality of a medical home is associated with access to needed therapeutic and supportive services among children with special health care needs.
METHODS. Data from the 2000–2001 National Survey of Children With Special Health Care Needs were used in the analysis. The primary group of interest was children who were 0 to 17 years of age and needed therapeutic (n = 15793) or supportive (n = 23376) services. For each characteristic of a quality medical home, the percentage of children who needed and received therapeutic and supportive services was generated. Logistic regression was used to control for covariates while modeling the association between overall quality of a child's medical home and having unmet needs for therapeutic or supportive services.
RESULTS. Of all children identified as needing services, 16.2% had unmet therapeutic and 9.8% unmet supportive service needs. Only 23.9% of the children who needed therapeutic and 32.5% of children who needed supportive services met the criteria of having a quality medical home. High-quality care within medical homes was associated with a decreased likelihood of having unmet needs for therapeutic and supportive services. Each characteristic of a quality medical home was associated with unmet need, as were severity of the child's condition, family income of <200% of the federal poverty level, underinsurance, and maternal education beyond high school.
CONCLUSIONS. Among other factors, having a poor-quality medical home seems to be a barrier to receiving needed therapeutic or supportive services for children with special health care needs. Efforts on the part of pediatricians to establish quality medical homes for all children could have the added benefit of facilitating access to needed therapeutic and supportive services and promoting the health and well-being of children with special health care needs and their families.
- medical home
- National Survey of Children With Special Health Care Needs
- therapy services
- support services
An estimated 1 in 6 children in the United States has a chronic condition that requires services beyond the traditional medical services required by children generally.1 Among other services, these children need therapeutic and supportive services, such as rehabilitation, environmental adaptations, assistive devices, personal assistance, mental health, home health, or respite care.2,3 Therapeutic and supportive services play a pivotal role in decreasing care burden on the family, promoting maximal independence of the child, and enabling full participation in community life.4–6 Access to services often reduces the need to seek expensive and generally publicly financed, out-of-home care.7,8 Previous studies demonstrated disparities in the use of therapeutic and supportive services that are associated with type of health insurance, the benefits or restrictions of health plans, out-of-pocket expenses, or care coordination.9–11
Current federal policies, including Healthy People 201012 and the Maternal and Child Health Bureau (MCHB) Strategic Plan,13 explicitly target improving access to services for children with special health care needs (CSHCN). A key initiative in this effort is the provision of medical homes for these children. The American Academy of Pediatrics (AAP) defines a medical home as having a usual source of primary care provided by a trained pediatric health care professional who also manages other aspects of care.14–17 Quality medical homes provide care that is “accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective”17(p184); however, disparities in both access to and quality of medical homes exist among CSHCN.18–20
Providing a quality medical home requires the investment of resources in patient care, including time spent partnering with families, case management, and care coordination. In practice, providers in the medical home work cooperatively with families to manage the child's condition, share information and resources, coordinate care across disciplines and service settings, and ensure smooth transitions through developmental processes.21–23 In theory, having a medical home should promote access to needed therapeutic and supportive services; however, there is little research evidence to confirm this link. The purpose of the study reported here was to determine whether, among CSHCN, the quality of a medical home is associated with access to therapeutic and supportive services. It was hypothesized that families of children who have high-quality medical homes would report fewer unmet needs for therapeutic and supportive services than families of children whose medical home lacked ≥1 of the characteristics of quality care.
The National Survey of Children With Special Health Care Needs (NSCSHCN) was initiated in 2001–2002 through the cooperative efforts of the MCHB and the Department of Health and Human Services.24,25 The purpose of the survey is to assess the prevalence and impact of special health care needs among children in the United States. A list-assisted, random-digit-dial telephone survey design using the State and Local Area Integrated Telephone Survey platform of the National Center for Health Statistics was used to screen and identify families of CSHCN. Eligible children who were younger than 18 years were identified using the CSHCN Screener developed in collaboration with the Foundation for Accountability and based on the definition of special needs adopted by the MCHB.26 The definition includes children who have “a chronic physical, developmental, behavioral or emotional condition and who also require health or related services of a type or amount beyond that required by children generally.”1 A set of 5 screening questions was used to identify children and included whether the child had any medical, behavioral, or other conditions that had lasted or were expected to last ≥12 months and resulted in limitations of activity; the use of prescription medications; or the use of education, health, therapeutic, or related services beyond what is used by children generally. A representative sample of households in all 50 states and the District of Columbia was screened until a minimum of 750 children who met the definition per state were identified. More than 373000 children representing ∼200000 households were included in the initial screening. Among the children whose screening results were positive for special health care needs, 38866 interviews were completed. The adult with the most knowledge about the child's condition and care, in most cases a parent or legal guardian, served as the respondent for each household. The NSCSHCN questions were designed to obtain information on child and family demographics, child health and functional status, health insurance coverage, access to care, use of services, care coordination, satisfaction with care, and the impact of the child's condition on the family. The items on the questionnaire were assembled by a panel of experts representing health services researchers, state and federal Title V program directors, the Association for Maternal and Child Health Programs, Family Voices, and survey design experts. Many of the items on the questionnaire were from existing national surveys, including the National Health Interview Survey, the Consumer Assessment of Health Plans, Promoting Healthy Development, the Questionnaire for Identifying Children With Chronic Conditions, and Your Voice Counts. The use of already tested survey questions enhanced the reliability and the validity of the NSCSHCN variables and permitted comparison with previously reported data. Survey questions generally required either yes/no responses (eg, Did you delay or not get health care for [child] because transportation was a problem?) or rating on a Likert-type scale (eg, How well do you think [child]'s doctors and other health care providers communicate with [his/her] school, early intervention program, child care providers, or vocational rehabilitation program? Would you say their communication is excellent/very good/good/fair/poor?). In the latter case, responses were collapsed into 2 categories with the 2 highest responses considered affirmative and all other responses considered negative. On the basis of the NSCSHCN, the overall prevalence of special health care needs among US community-dwelling children is estimated to be 12.8%.27
Description of Variables
Among the children identified as having special health care needs in the NSCSHCN, only those who were reported to need therapeutic (n = 15793) or supportive (n = 23376) services were included in this analysis of the association between medical home and unmet need. Therapeutic services were defined as professionally provided services such as occupational, physical, and speech therapy; mental health; or substance abuse services. Supportive services were programs and services that aid families in caring for a child, such as specialized equipment, transportation, home health, or respite care. Respondents reported whether all of a child's needs for therapeutic and/or supportive services were met.
The independent variable, having a quality medical home, was constructed by combining responses to a series of questions about the specifics of care, including whether the family reported that (1) the child received all necessary preventive care, (2) the care was accessible (ie, no delay in care as a result of cost or insurance, transportation, office hours, or physician availability), (3) the care was family centered (ie, care provider spends enough time with family, listens, provides information, and helps the family feel like a partner), (4) care was continuous, comprehensive, and coordinated (ie, child had a usual source of care and a personal doctor or nurse, care coordination was provided through the doctor's office, services were easy to use, doctor communicated well with other providers, and there were no problems obtaining appointments or referrals), and (5) care was culturally sensitive (ie, no language, communication, or cultural problems, and provider is sensitive to family's culture). Additional details of specific questions on the NSCSHCN and methods for operationalizing the medical home concept can be found in the literature.20,28 In some cases, skip patterns in the design of the survey were used to streamline responses on the basis of factors such as the child's age or appropriateness of the question. Thus, in constructing the medical home variables, the number of observations for each of the individual characteristics of the medical home varied. A specific example worthy of note is that accessibility of care was determined only for children who were reported to have delays in obtaining care. Children whose medical home fully met each of the indicators were considered to have a high-quality medical home.
Following the premises of Andersen and Aday's health behavior model, other predisposing, need, and enabling factors that are commonly associated with access to health and related services were controlled in the analysis of the association between a quality medical home and unmet need for services.29,30 Covariates included the child's age, gender, and race/ethnicity; family size; family structure; poverty level; maternal education; whether the child was underinsured; and the severity of the child's condition. The underinsurance variable was derived using a method reported by Kogan et al31 in which children were considered to have adequate health insurance when the respondent reported that the insurance benefits met the child's needs, any costs not covered by insurance were considered reasonable, the health insurance plan permitted the child to see any needed providers, and the child was insured continuously throughout the previous year.
Statistical analyses were conducted by using Stata 7.0,32 which includes a Taylor-series linearization adjustment procedure for variance estimation to account for the complex survey design. In the final models, sample data were weighted to reflect the age-gender-race distribution of the US child population. Descriptive statistics were used to generate an estimate of the percentage of CSHCN who were reported to need and receive therapeutic or supportive services by selected demographic characteristics. Among children who needed therapeutic or supportive services, 3.5% had missing data for maternal education and 9.1% had missing data for family income status. Values were imputed for observations with missing data using a model, suggested by Bramlett,33 which is reported to predict correctly income status for 81% of the cases with missing data. Differences in the percentage of children who had a high-quality medical home among those who needed versus those who did not need therapeutic and supportive services was tested using the χ2 statistic. Logistic regression models were used to assess whether the quality of the medical home was associated with unmet needs for therapeutic or supportive services after adjustment for demographic and socioeconomic variables. Models were created for overall quality of the medical home as well as for each of the characteristics that contribute to quality care.
Table 1 provides descriptive information for children who needed therapeutic or supportive services. Among the children who needed therapies, <24% of families reported the child met all of the criteria of having a quality medical home. Among children who needed supportive services, findings were slightly higher, with 33% of families reporting that the child had a quality medical home. Figure 1 shows the percentage of children who needed as well as had unmet needs for therapeutic (Fig 1A) and supportive services (Fig 1B). Families were more likely to report a need for supportive than for therapeutic services. Among those who needed services, however, there was a higher percentage of children with unmet needs for therapeutic services (16%) than for supportive services (10%). Families of children who needed therapeutic and supportive services were less likely to report the child's having a quality medical home than families of children with other types of special needs (Fig 2).
The hypothesis of the study was supported, because children who had a high-quality medical home were less likely to have unmet needs for therapeutic (64%) or supportive (70%) services than children whose medical home did not meet all of the quality criteria (Table 2). Severity of a child's condition was associated with unmet needs: children who had mild conditions were less likely to have unmet needs (13% for therapeutic and 21% for supportive services) than children with severe conditions (48% for therapeutic services and 50% for supportive services). Control variables that were associated with unmet needs for services included family income of <200% of the federal poverty level and the child's having inadequate or no health insurance. Maternal education followed a somewhat different pattern than the other socioeconomic variables. Families in which the mother was educated beyond high school, generally considered an indicator of higher socioeconomic status, were more likely to report a child's having unmet needs for services than families in which the mother had not graduated from high school. Predisposing children's characteristics were generally not associated with unmet needs for services. The relationship between quality of the medical home and unmet needs persisted even after controlling for the severity of the child's condition and the socioeconomic variables.
Each of the characteristics of a quality medical home was also independently associated with unmet need for therapeutic and supportive services. Table 3 shows the percentage of children with unmet needs for each characteristic. Even when families reported that a characteristic of a medical home was present, unmet needs for services were reported 5% to 33% of the time. The percentage of children with unmet needs for services, however, was consistently higher for children whose families reported lacking the characteristic than for those who reported that it was present. For therapeutic services, in adjusted models (data not shown), children reported to have preventive care (adjusted odds ratio [aOR]: 0.20; 95% confidence interval [CI]: 0.13–0.33); family-centered care (aOR: 0.37; 95% CI: 0.31–0.54); continuous, comprehensive, coordinated care (aOR: 0.29; 95% CI: 0.20–0.42); or compassionate, culturally effective care (aOR: 0.54; 95% CI: 0.44–0.68) were less likely to have unmet needs than children who lacked each respective characteristic of the medical home. Accessible care was the only characteristic that failed to reach significance (aOR: 0.59; 95% CI: 0.26–1.30) in the adjusted model. Similar results were found for supportive services with preventive care (aOR: 0.16; 95% CI: 0.10–0.24); accessible care (aOR: 0.45; 95% CI: 0.22–0.93); family-centered care (aOR: 0.49; 95% CI: 0.40–0.59); continuous, comprehensive, coordinated care (aOR: 0.47; 95% CI: 0.31–0.71); or compassionate, culturally effective care (aOR: 0.60; 95% CI: 0.48–0.74) each being associated with whether needs were met.
Achieving the AAP and MCHB policy goals of ensuring that all children and youth with special health care needs have access to a quality medical home may have the added benefit of promoting access to therapeutic and supportive services. Families of CSHCN rely on therapeutic and supportive services to assist them in caring for their children in home and community settings; however, if identified needs for therapeutic and supportive services remain unmet, then the health and well-being of children and their families are placed at risk. In the absence of services, CSHCN may experience secondary conditions or disabilities or poor outcomes from medical interventions or may fail to achieve their full functional potential.34–36 Supportive services, such as transportation or respite care, are instrumental in ensuring that the family is able to meet its collective needs as well as those of the child.37–39 When supportive services are not available, participation in home, school, work, or community life is often restricted.
Among CSHCN and their families, several studies have demonstrated disparities in access to medical and related services according to demographic characteristics, socioeconomic status, and access to health insurance.9–11,40,41 This report extends our knowledge of the factors that affect children's access to services by including the structure and processes of care found within a quality medical home and specifically examining their association with access to therapy and support services. Results suggest that having a quality medical home is associated with whether needs for therapeutic and supportive services are met. The presence of specific characteristics of a quality medical home, including parent report of access to preventive care, the sensitivity of the primary care provider to the culture and needs of children and their families, and the degree to which providers engaged in care coordination, are also associated with fewer unmet needs for therapeutic and supportive services.
The high level of need for health, education, and social services experienced by children with chronic or disabling conditions and their families puts them at risk for unmet needs as they learn to negotiate eligibility requirements, policies, procedures, and reimbursement systems across settings. Among children who need therapeutic and supportive services, the presence of a quality medical home in which the providers are reported to be sensitive to the needs of the child and the family, knowledgeable about community resources, and available to assist the family in coordinating care seems to reduce the risk for having unmet needs; however, the data in this study also suggest an association between actually needing therapeutic and supportive services and the presence of a quality medical home. Children whose special needs include therapeutic or supportive services were less likely to have a quality medical home than children with other types of special needs. Some CSHCN require only prescription medications to maintain health and function, whereas others require behavioral interventions, and still others need complex medical, rehabilitation, or supportive services. Among this heterogeneous group of CSHCN, disparities in access to a quality medical home suggest that monitoring the achievement of national medical home policy objectives must go beyond measuring the larger group's success to assessing the degree to which the needs of high-risk subgroups are being served through quality medical homes.
The findings presented here are consistent with previous studies demonstrating relationships between child health and functional status and unmet needs for general and specialty medical care as well as related services.9,42–45 Children with complex health care needs are more likely to require therapeutic and supportive services and to have unmet service needs than those with less severe conditions. The reasons for unmet service needs are varied but include financial problems, time conflicts, and the accessibility or availability of a needed provider.45,46 The cost of care and burden on the family to pay for care rises for children whose limitations of function require the family to seek intensive health, education, and community-based services.2,47 With regard to therapeutic or supportive services, third-party reimbursement sources frequently impose limitations on the coverage, scope, intensity, or duration of therapeutic and supportive services, leaving families to bear the burden of paying out-of-pocket or bypassing care.48,49 Mechanisms through which medical homes may act to protect families from undue burden or unmet needs include documenting the medical necessity of therapeutic and supportive services, helping to coordinate services across settings, or directing families to supplemental resources for covering the cost of needed services. Additional research is clearly needed to explicate the means by which quality medical homes may influence children's access to therapeutic and supportive services.
Previous studies have reported mixed results with regard to the association between predisposing characteristics of children and their families and unmet needs for routine or specialty medical care.42,44 For therapeutic services, in this study, the families of children in the elementary school age group seem less likely to report unmet needs for services than families of older children. Possible explanations for the discrepancy across age groups include the methods used in school settings to prioritize the provision of limited therapeutic resources. For example, one could argue from a developmental perspective that early intervention is a priority, and, therefore, resources should be funneled into providing therapeutic services at the early elementary level rather than focusing on high school or transition services. Findings of this study regarding associations between enabling characteristics and unmet need for therapeutic and supportive services generally follow the same pattern as for other health and related services.10,45 Low family income and inadequate health insurance for the child are consistent predictors that a child will have unmet needs for services.
As with other cross-sectional studies that are based on national survey data, there are limitations to any inferences being drawn from the NSCSHCN. Additional research is needed to determine the nature of the association between having a quality medical home and access to therapeutic and supportive services. Unmet therapeutic and supportive service needs may be the result of inadequate knowledge on the part of primary caregivers, inaccessible services, a lack of sufficient resources in the medical home for care coordination, or insensitivity on the part of providers to the perceived needs of children and their families.14,50–52 The questions related to therapeutic and supportive services included in the NSCSHCN do not provide detailed information regarding the nature of the services provided; therefore, it is not possible to determine the specific type, frequency, or duration of services provided or whether the services involved diagnostics and/or interventions. Another limitation of the study is the multiplicity of reasons that a child might not access needed care. Ideally, a quality medical home would be able to serve children and their families by providing services that meet all of their needs. In reality, however, there may be circumstances beyond the control of the medical home that obstruct children from obtaining care. Family priorities, cultural expectations, religious beliefs, or other factors unrelated to the quality of the medical home are also possible determinants of a child's access to services. It should be noted that not all concepts included in the AAP definition of a medical home are measured in the NSCSHCN survey; however, given the apparent association of unmet need for services with the quality medical home concepts that were measured, it seems likely that the association would strengthen with a more robust measure of a quality medical home. In this study, the method used to measure a quality medical home involved an all-or-none criterion. Families had to report that the child's medical home met all of the measured criteria to be considered a “quality” medical home. Other methods of measuring the medical home are proposed in the literature, including construction of a continuous scale of “medical homeness.”18 As an overall measure of quality, a continuous model that ascertains the degree to which a medical home meets the AAP criteria seems a sound approach. For intervention purposes, it is critical to determine which characteristics contribute to the overall quality of the medical home.
Children and youth with special health care needs and their families experience many challenges in life, including negotiating a complex service delivery system. The findings reported here suggest that providing these children and their families with a quality medical home increases the likelihood that they will receive needed services, such as mental health interventions, respite care, special education, or rehabilitation therapies. Investing effort and resources in providing comprehensive, coordinated, family centered, compassionate, and culturally effective care may maximize the chances that children's needs are met not only within the pediatrician's office but also in the homes, schools, and communities in which they live.
- Accepted June 12, 2007.
- Address correspondence to Ruth E. Benedict, DrPH, OTR, University of Wisconsin, Department of Kinesiology, Program in Occupational Therapy, 3170 Medical Science Center, 1300 University Ave, Madison, WI 53706-1532. E-mail:
The authors have indicated they have no financial relationships relevant to this article to disclose.
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