J Autism Dev Disord (2015) 45:636–644 DOI 10.1007/s10803-014-2218-3
ORIGINAL PAPER
The Impact of the Medical Home on Access to Care for Children with Autism Spectrum Disorders Nancy C. Cheak-Zamora • Janet E. Farmer
Published online: 24 August 2014 Ó Springer Science+Business Media New York 2014
Abstract Children with autism spectrum disorders (ASD) experience difficulty accessing health care services. Using parent-reported data from the 2009–2010 National Survey of Children with Special Health Care Needs, we examined whether having a medical home reduces unmet need for specialty care services for children with ASD (n = 3,055). Descriptive statistics and Chi square tests identified sample characteristics and examined the relationship between unmet needs and a standardized measure of medical home. Logistic regression models explored the individual impact of demographic, condition-specific and medical home variables on unmet need. Parents reported that nearly all children had a need for specialty services, 36 % had an unmet need, and 23.9 % had a medical home. Children who had fewer unmet needs were more likely to have received family-centered and coordinated care through a medical home, and this relationship remained significant even when demographic and condition-specific variables were taken into account. These findings suggest ways to improve access to care for children with ASD through enhanced family-centered and coordinated care within the medical home. N. C. Cheak-Zamora (&) Department of Health Sciences, University of Missouri, 510 Clark Hall, Columbia, MO, USA e-mail: [email protected]; [email protected] N. C. Cheak-Zamora Public Health Program, University of Missouri, 510 Clark Hall, Columbia, MO 65211, USA J. E. Farmer Department of Health Psychology, Research School of Health Professions, University of Missouri, 508 Lewis Hall, Columbia, MO 65211, USA
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Keywords Autism spectrum disorder Delivery of health care Unmet needs Medical home
Introduction Children with autism spectrum disorders (ASD) often require more health and educational services than other children with special health care needs (CSHCN) to reach their full potential (Bitterman et al. 2008; Gurney et al. 2006; Montes et al. 2009). Their service needs are high not only due to core neurobehavioral deficits in social communication and restricted or repetitive behaviors, but also because of associated co-morbid conditions such as speech/ language impairments, anxiety/depression, and medical concerns (Howlin 2005). Adding to the complexity, service needs vary across individuals and over time. For example, Cidav and colleagues examined Medicaid service utilization data for children with ASD at different ages (Cidav et al. 2013). Typical service needs shifted from community-based diagnostic and therapeutic services to psychopharmacological interventions and long-term care across the course of development, and expenditures increased steadily with age. As awareness increases about service patterns, there is also a growing body of literature about the extent of unmet needs for specialty services (Brachlow et al. 2007; Gurney et al. 2006; Kogan et al. 2008; Krauss et al. 2003; Sheldrick and Perrin 2010). Parents of individuals with ASD identify significantly more problems accessing specialized services and supports compared to other CSHCN. Correspondingly, Medicaid managed care data show that children with ASD have difficulty accessing needed diagnostic and behavioral services (Ruble et al. 2005). Poor access to services may be the result of a variety of problems, such as a lack of
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qualified providers, ineffective coordination, and lack of adequate health insurance coverage (Chiri and Warfield 2012; Krauss et al. 2003; McGrath et al. 2009). Demand for specialized services is likely to increase, given the growing prevalence of ASD(CDC 2012) and advances in evidencebased interventions (Odom et al. 2010). Addressing unmet needs will be essential for optimal child and family outcomes. One promising approach to improving access to care for children with ASD is the medical home model, developed by the American Academy of Pediatrics to promote comprehensive, coordinated, and family-centered care in primary care settings. This health care delivery strategy has been shown to offset barriers to care among CSHCN. For the general CSHCN population, the benefits of receiving care through a medical home include fewer unmet needs for specialty services, greater parental satisfaction, better health, lower costs, and decreased health disparities (Farmer et al. 2011; Homer et al. 2008; McGrath et al. 2009; Sheldrick and Perrin 2010). Few studies have examined the impact of the medical home on children with ASD. One striking finding is that children with ASD are half as likely to have a medical home compared to other CSHCN, even after controlling for other factors that affect health care access (Brachlow et al. 2007; Child and Adolescent Health Measurement Initiative 2012; Kogan et al. 2008). Typically, children with ASD have a usual source of care, but they lack key components of the medical home such as family-centered, comprehensive, and coordinated care. Results from studies of children with ASD with a medical home have been positive. For instance, one ASDspecific medical home intervention tailored the principles of the medical home model to the individual needs of children with ASD by creating care plans, treatment monitoring logs, coordination assistance for clinical and community services, and ASD-friendly appointments (Golnik et al. 2012). Families receiving the intervention reported greater satisfaction with care and more participation in decision making, compared to families who did not receive the intervention. Although the families receiving the intervention reported fewer unmet service needs, the difference between the groups was not statistically significant perhaps because of the relatively small sample size. Another study found that access to care from medical specialists and genetic counseling improved for children with ASD who had a medical home (McGrath et al. 2009). This study examined a limited range of specialty services and did not measure access to services frequently utilized by children with ASD (e.g., mental health). To address this gap, Farmer and colleagues investigated access to primary and specialty care services among children with ASD enrolled in the Interactive Autism Network
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(IAN), an online autism research registry (Farmer et al. 2013). They found that 63 % of children had unmet needs for specialty services, and the highest unmet need was for behavioral therapy. Less than one in five children had a medical home, but those who did were more likely to have access to needed services. The purpose of this study was to extend previous research on the relationship between access to a medical home and unmet needs for a broad range of specialty services among a nationally representative sample of children with ASD. Based on the literature, we hypothesized that access to a medical home will be associated with fewer unmet needs for children with ASD.
Methods Data Source and Sample The 2009/10 NS-CSHCN was sponsored by the Maternal and Child Health Bureau and conducted by the Center for Disease Control and Prevention’s National Center for Health Statistics. The survey utilized a computer-assisted land-line telephone interview technology supplemented with an independent random digit-dial sample of cell phone numbers, to randomly sample nationally representative households evenly distributed across the 50 states and the District of Columbia (Blumberg et al. 2008). Initial screening questions identified parents or legal guardians of CSHCN, age 0–17. Of these, 40,242 parents completed indepth interviews about their CSHCN. The current study examines only children and youth with ASD; thus, the sample was further limited to those with a current ASD diagnosis (n = 3,055). The Institutional Review Board at the university involved in this project approved all study procedures and all persons included in the study gave their informed consent prior to their inclusion in the study. Measures Outcome Measure The unmet need outcome is a composite measure of 12 variables representing an unmet need for one or more specialty services. Parents were asked if their child had a need for one or more specialty services in the last 12 months. If a need for a particular service was reported, the caregiver was asked if the child received all needed care for that service. If the caregiver answered ‘‘no’’ (did not receive all needed care), the child was rated as having an unmet need in that service (Health Resources and Services Administration et al. 2011). Specialty services included: non-preventative dental/orthodontia care,
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communication aids/devices, durable medical equipment, hearing aids/care, home health care, prescription medication, mental health/counseling, mobility aids/devices, specialty doctors, therapy (physical, occupational, or speech therapy; PT/OT/SP), substance abuse treatment/counseling, and eye glasses/vision care. Unmet need was examined for each individual service and as a summary variable that combined all services to obtain the total number of unmet needs. This variable was then dichotomized (no unmet needs vs. one or more unmet needs) to examine what explanatory variables were associated with having unmet needs within a logistic regression analysis. Explanatory Variables
J Autism Dev Disord (2015) 45:636–644 Table 1 Demographic and condition specific variables for children with ASD
Data Analysis We utilized descriptive statistics to report the characteristics of children with ASD within the national survey. Additionally, we examined the proportion of children with a need for specialty services, those with an unmet need (outcome measure) and those with access to a medical home and its component measures. Analysis of variance
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Weighted n
Percent
2,463 589
675,777 163,037
80.6 19.4
Demographic variables Gender Male Female Minority status White Minority
2,202
526,044
62.7
853
313,229
37.3
2,253
579,601
70.1
761
247,051
29.9
Household structure Two parent Single or other
Variables previously associated with unmet needs for specialty services for CSHCN were included in initial analysis (Farmer et al. 2011; Homer et al. 2008; McGrath et al. 2009; Sheldrick and Perrin 2010). Child and familylevel demographic variables included: age, gender, minority status, household structure, family annual income, mother’s education and health insurance coverage. Condition-specific factors were assessed using indicators (a) severity of condition and (b) need for child and family services. Severity-related variables included ASD severity, number of co-morbidities, and impact of condition on daily activities. For need-related variables, the child’s total need for specialty services was defined as the number of services needed (range 1–12). Caregivers also reported the need for family mental health, respite care and genetic counseling services during the last 12 months and whether they received care for each needed service. We developed one variable for each of the family-related services that indicated whether the service was not needed, needed and received, or needed and unmet. Quality of care was assessed by examining a standardized measure of the medical home developed by the Child and Adolescent Health Measurement Initiative (CAHMI). Components of this measure included: access to a personal doctor/nurse, usual source of care, referral problems, receipt of familycentered care, and care coordination. A medical home composite is based on a combination of the five components (Child and Adolescent Health Measurement Initiative 2009a, b).
Sample n
Annual family income [100 %FPL
489
158,819
18.9
100–199 %FPL
639
181,788
21.7
200–399 %FPL
984
266,255
31.7
400 % or \ FPL
943
232,410
27.7
Education level Less than high school High school graduation More than high school
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65,383
7.8
382 2550
134,682 639,209
16.0 76.2
1,993
516,584
61.6
973
299,570
35.7
86
22,504
2.7
Health insurance type Private or private/public Public or other Uninsured Condition specific variables Daily activities Never affected
192
50,729
6.1
Moderately affected some of the time
815
211,192
25.2
Consistently affected, often/great deal
2,036
574,545
68.7
Mild
1,587
411,881
49.5
Moderate
1,092
300,941
36.2
358
119,272
14.3
Severity of ASD
Severe
and Chi square tests examined the association between unmet needs and medical home variables. Three logistic regression models were constructed to examine the strength of the relationship between the medical home components and unmet need for specialty services. The models were built to test the individual and additive effects of (a) demographic factors, (b) conditionspecific factors, and (c) the medical home components. Univariate analysis was used to develop a parsimonious regression models. Only variables with a significant association with unmet need were retained in the regression. Classification tables were included in each logistic
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regression to compare the predictive accuracy of each model and between models. This was calculated by classifying observations with [50 % (predicted) probability of unmet needs as having unmet needs and those with B50 % probability as having no unmet needs. Only children with at least one need for a specialty service were included in these analyses (61 children (2 %) were excluded). Statistical methods that incorporated weighted estimates were used via the SPSS Complex Samples Module (SPSS Statistics, IBM Corporation, Armonk, NY) (Graubard and Korn 1996).
Results Demographic and condition-specific characteristics of children with ASD are described in Table 1. The average age of children within this sample was 9.77 years (SD = 0.1). Further, participants had on average three comorbid
conditions in addition to their ASD diagnosis. Although the majority of mothers had some college or trade-level education, household income was evenly distributed across all categories. Unmet Needs Nearly all children with ASD had a specialty service need (98 %) with the average child needing nearly four of the 12 possible services (Table 2). Just over a third (36 %) of these children had unmet needs. Unmet needs were highest for: home health services, substance abuse counseling, communication aids/devices, PT/OT/SP services, dental care and mental health services. Access to a Medical Home Just under a quarter (23.9 %) of children with ASD had access to a medical home (Table 3). The vast majority of children met criteria for having a personal doctor/nurse
Table 2 Specialty service needs Percent with service need (SE)
Percent with unmet need (SE)
Children’s specific specialty service needs (n = 2,994)a Total
98.0 (0.1)
36.4 (0.5)
Medications
78.4 (1.3)
4.9 (0.9)
PT/OT/SP
78.4 (1.2)
24.4 (1.6)
Specialty doctor
58.4 (1.6)
12.8 (1.4)
Mental health
54.3 (1.6)
21.9 (2.0)
Table 3 Children’s access to a primary care medical home Medical home components
Weighted n
Percent
(1) Child has a personal doctor or nurse
788,542
94.0
(2) Child has a usual source for both sick and well care
753,738
90.0
(3) No problem obtaining referrals, or no referrals needed
244,960
72.0
(4) Family-centered carea
402,966
49.0
(i) Provider spends enough time
563,954
68.0
669,415 688,213
80.0 83.0
Vision
35.4 (1.6)
7.1 (1.5)
Dental care
24.6 (1.3)
23.4 (2.7)
Communication aids/devices
13.1 (1.1)
24.9 (3.7)
(ii) Provider listens carefully (iii) Provider is sensitive to family values
Home health
11.1 (1.4)
29.3 (8.5)
(iv) Provider provides needed information
563,026
68.0
(v) Provider partners with family
658,330
79.0
292,767
36.9
Durable medical
9.3 (1.4)
6.4 (2.0)
Hearing
6.2 (0.8)
13.8 (4.9)
(5) Coordinated careb
Mobility
3.7 (0.6)
17.6 (9.4)
Care coordination help
Substance abuse/counseling 3.2 (0.8) Family’s specific support service needs (n = 1,330)b
26.0 (11.9)
Total
43.5 (0.5)
63.2 (0.5)
Family mental health services
57.1 (2.7)
38.8 (3.1)
Respite care
55.0 (2.5)
58.0 (3.6)
Genetic counseling
26.6 (2.1)
44.4 (4.7)
Mean (SD)
Range
Child needs for specialty services
3.69 (.07)
0–12
Unmet child needs Family needs for support services
0.69 (.04) 0.63 (.03)
0–8 0–3
Unmet family needs
0.30 (.02)
0–3
a
61 children (2 %) had no specialty service needs
b
1,727 parents (56 %) reported no family support service needs
(i) Receive adequate care coordination
183,353
21.9
(ii) No care coordination needed
370,831
44.3
(i) Very satisfied with communication between doctors, if needed
359,744
46.7
(ii) Very satisfied with communication with schools/others, if needed
206,542
43.5
193,513
23.9
Communication satisfaction
Medical home composite a
Family-centered care component was met by positively answering all 6 of the sub-items (i–v)
b
The coordinated care component was met in one of two ways: (a) ratings indicating adequate care coordination on a composite of 10 survey items, or (b) rating indicating no care coordination was needed. Parents of children who used less than two services do not rate these items, and their children are counted as having a medical home if criteria for the other four components are met
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Table 4 Adjusted OR of children with ASD with one or more unmet needs for specialty services Model 1
Model 2
Model 3
.99 (.96–1.03)
.97 (.93–1.01)
.97 (.93–1.01)
Male
Ref
Ref
Ref
Female
1.08 (.76–1.53)
1.23 (.87–1.76)
1.19 (.82–1.74)
White
Ref
Ref
Ref
Minority
1.00 (.73–1.36)
1.12 (.81–1.54)
1.15 (.82–1.62)
Ref
Ref
Ref
1.37 (.98–1.93)
1.12 (.78–1.60)
1.13 (.76–1.68)
400 % or \FPL
Ref
Ref
Ref
200–399 %FPL
1.63 (1.14–.2.33)*
1.51 (1.07–2.13)*
1.56 (1.08–2.25)*
Demographic variables Age Gender
Minority status
Household structure Two parent Single or other Annual family income
100–199 %FPL
1.08 (.70–1.66)
.88 (.56–1.40)
.88 (.55–1.41)
[100 %FPL
1.09 (.63–1.91)
.92 (.52–1.62)
.93 (.50–1.75)
More than high school
Ref
Ref
Ref
High school
.87 (.57–1.33)
1.17 (.76–1.82)
1.07 (.67–1.70)
Less than high school
.77 (.39–1.52)
.86 (.36–2.08)
.70 (.27–1.85)
Private or private/public
Ref
Ref
Ref
Public or other
1.49 (1.00–2.23)***
1.33 (.92–1.93)
1.42 (.96–2.10)
Uninsured
4.86 (2.33–10.14)***
4.42 (2.30–8.51)***
3.91 (1.90–8.04)***
Never affected Moderately affected, some of the time
Ref 1.02 (.50–2.06)
Ref .65 (.31–1.38)
Consistently affected, often/great deal
1.43 (.71–2.87)
.94 (.45–1.96) Ref
Education level
Health insurance type
Condition specific variables-child Daily activities
Severity of ASD Mild
Ref
Moderate
1.22 (.89–1.69)
1.26 (.88–1.79)
Severe
1.06 (.64–1.76)
.96 (.57–1.61)
Comorbid conditions
1.02 (.93–1.12)
1.02 (.93–1.12)
Total need for services
1.36 (1.22–1.51)***
1.33 (1.19–1.49)***
No need
Ref
Ref
Need and received care
1.04 (.70–1.54)
.98 (.64–1.50)
Unmet need for care
6.30 (3.66–10.84)***
4.21 (2.44–7.30)***
No need Need and received care
Ref 1.18 (.73–1.93)
Ref 1.24 (.75–2.07)
Unmet need for care
3.57 (2.38–5.36)***
2.82 (1.84–4.31)***
Ref
Ref
Condition specific variables–family Family mental health services
Respite care
Genetic counseling No need Need and received care Unmet need for care
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.86 (.47–1.57)
.78 (.41–1.50)
1.80 (.89–3.67)
1.25 (.61–2.54)
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Table 4 continued Model 1
Model 2
Model 3
Medical home variables Personal doctor or nurse Yes No
Ref .69 (.31–1.57)
Usual source for sick and well care Yes
Ref
No
1.21 (.77–1.91)
Referral problems Yes
Ref
No
1.47 (.95–2.28)
Family centered care Yes
Ref
No
1.86 (1.33–2.59)***
Care coordination Yes
Ref
No Percent correctly classified
2.64 (1.76–3.97)*** 67.50 %
75.70 %
76.50 %
* p \ .05; ** p \ .01; *** p \ .001
(94 %), a usual source of care (90 %), and no problems obtaining referrals (72 %). Family-centered and coordinated care was more difficult to obtain with 49 and 37 % of caregivers reporting receiving these services respectively. Associations Between Unmet Needs and Access to a Medical Home Between Group Differences Only 11 % of children with a medical home had unmet needs compared to 89 % without a medical home (F(1, 3004) = 91, p \ .01). When examining the components of the medical home, having a personal doctor/nurse and a usual source of care was not associated with unmet needs. In contrast, access to referrals (F(1, 3004) = 43, p \ .01), family-centered care (F(1, 3004) = 61, p \ .01) and care coordination (F(1, 3004) = 83, p \ .01) were associated with decreased unmet needs. Logistic Regression Within the first multivariate logistic regression, the only demographic variables associated with unmet needs for specialty services were poverty and insurance status (Table 4). Families with income between 200–399 % of the federal poverty level (FPL) had significantly higher adjusted odds of reporting unmet needs than those with incomes C400 % (adjusted odds ratios (aOR) 1.63;
p \ .05). Families who reported having public or ‘‘other’’ forms of insurance (aOR 1.49; p \ .01) and those that were uninsured (aOR 4.86; p \ .01) had higher odds of reporting unmet needs compared to families with private insurance. Uninsured children had nearly 5 times greater adjusted odds of reporting unmet needs compared to the privately insured. This initial model correctly classified 67.5 % of children with unmet needs in the sample relative to chance ([50 % probability). The second regression model included demographic and condition-specific variables. The significant variables in Model 2 were consistent within Model 1 with the exception of public/other health insurance which was no longer significantly different from private insurance (Table 4). As number of total service needs increased for children so did the odds of having unmet needs. Families with an unmet need for mental health services and respite care had 6.3 and 3.57 times greater odds of having an unmet need for children’s specialty services than families with no need for these services (p’s \ .001). With the addition of conditionspecific variables, Model 2 accurately classified 75.7 % of children with unmet needs in the sample relative to chance. The final model examined medical home components in addition to variables in Model 2. Significant variables in Model 3 were consistent with Model 2. Of the five medical home components, access to family-centered care and care coordination were significantly associated with unmet needs. Children who lacked family-centered care had 1.86 greater odds of having unmet needs than those with family-
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centered care (p \ .001). Similarly, lack of care coordination increased the odds of having unmet needs 2.65 times (p \ .001). Model 3 had the strongest predictive accuracy of all the regression models with 76.5 % of children with unmet needs correctly classified relative to chance, though the improvement was relatively modest (1 %). A separate analysis used the medical home composite in Model 3 rather than its components. Children without a medical home had 4.4 times greater odds of having unmet needs compared to those with a medical home (aOR 4.39; p \ .01; results not shown).
Discussion Consistent with our hypothesis, access to a medical home was strongly associated with fewer unmet needs among children with ASD. Caregivers reporting services consistent with a medical home were more than four times as likely to report no unmet needs. Perhaps most importantly, this study showed that family-centered care and care coordination components of the medical home are drivers of improved access to specialized services. Unfortunately, these components of the medical home are least available to children with ASD. The importance of family-centered care and care coordination to access to needed services has been demonstrated in other CSHCN(Taylor et al. 2011), but this is the first study to show the importance of these two care processes on unmet needs of children with ASD. Other specific factors associated with unmet needs included insurance status, income level, total need for child services, and unmet need for family mental health care and respite care. Uninsured children had significantly higher unmet needs throughout all analyses and had over 4 times the odds of having unmet needs compared to children with private insurance. It is important to note that there were relatively few uninsured children in our sample and full implementation of the Patient Protection and Accountable Care Act (PPACA) should reduce this number further. Although the number of uninsured children with ASD will be reduced, monitoring this group as well as the underinsured will remain important as access to care may be hindered by many factors including insurance status and deductible and co-payment rates. As might be expected, families with moderate income (200–399 % FPL) were more likely to have children with unmet needs compared to families with a higher income (C400 % FPL), perhaps due to poorer health insurance coverage in the moderate income group. Surprisingly, families with income near or below the FPL (\200 %) were not significantly different than those with the highest income. This is likely due to the fact that these children
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have access to public health insurance through Medicaid or Children’s Health Insurance Program (Medicaid 2012). Our findings validate those obtained in a similar study utilizing data from an online registry (IAN) (Farmer et al. 2013). Less than one in five children had a medical home in both studies (18.9 and 23.9 %, respectively), and both showed a strong association between having a medical home and improved access to care. Similarly, both studies found that children with unmet needs were more likely to have a higher number of total service needs and more frequently lacked family services such as mental health and respite care. High needs have been associated with and may be a proxy for complexity of medical condition for CSHCN (Cohen et al. 2011). This suggests that there may be a subgroup of children with ASD and co-morbidities who have highly complex conditions and are in greatest need of targeted care coordination and family supports. Understanding the role of the medical home for children with ASD is of the utmost importance as we strive to improve patient outcomes through enhanced quality of care. Based on this study, pediatricians and other primary care providers can make a substantial difference in children’s access to specialized services by providing a medical home, with a particular focus on improvements in family-centered and coordinated care. To do so, providers must be trained about ways to address the complex needs of children with ASD. While many resources are being utilized to teach pediatricians how to identify the early signs of ASD, few receive training about effective interventions and care management for this population. Additional training is needed through residency programs, Continuing Medical Education, and national educational programs such as those developed by the Autism Treatment Network and American Academy of Pediatrics (Coury et al. 2009; Pediatrics 2013). Further, both small and large health care organizations would benefit greatly from more integrated health care systems with designated care coordinators for high-needs patients such as those with ASD. The passage of the PPACA has created a paradigm shift in which quality and connectivity of needed services are the focal point. The PPACA has increased payment models for Accountable Care Organizations (ACO)–groups of providers administering comprehensive and coordinated team-based care within a ‘‘medical neighborhood.’’(Fisher 2008; Taylor et al. 2011) These groups focus on providing preventative and rehabilitative care when it is needed thus avoiding increased emergency room or complication-related costs. ACO’s have increased considerably and have the potential to promote coordinated care as they demonstrate their effectiveness and efficiency (Noble and Casalino 2013). Lastly, for quality care to improve for all children, pediatricians and other primary care providers must be
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reimbursed relative to the level of care they provide. If providing quality care through a medical home is important to patients and the health care system, as this study shows, it must be compensated accordingly. There are limitations to the study findings. First, the cross-sectional nature of this study only allows for the examination of correlational not causal factors. Second, as with all surveys, parent reports were used and are subjective in nature. This maybe a particular problem for reports of need for services within the last 12 months as recall across a long time period may be unstable (Harel et al. 1994). Third, need for behavioral health services was shown to be the greatest unmet need in the previous study but this service is not measured within the national survey (Farmer et al. 2013). This likely resulted in an underestimate of service and unmet needs within our study. Despite these limitations, this study makes a unique contribution because it examines the impact of the medical home on access to care using up-to-date data from one of the largest, nationally representative samples of children with ASD.
Conclusion Strengthening the medical home through enhanced training, supports for care coordination and better reimbursement will no doubt reduce unmet needs and improve quality of life for children with ASD and their families. Future research should identify best practices that support effective and cost-efficient provision of family-centered and coordinated care through the medical home. Acknowledgments The authors would like to express their appreciation to Dr. J. Wade Davis for his statistical assistance. Conflict of interest of interest.
The authors declare that they have no conflict
Ethical standard The Institutional Review Board at the university involved in this project approved all study procedures and all persons included in the study gave their informed consent prior to their inclusion in the study.
References Bitterman, A., Daley, T. C., Misra, S., Carlson, E., & Markowitz, J. (2008). A national sample of preschoolers with autism spectrum disorders: Special education services and parent satisfaction. Journal of Autism and Developmental Disorders, 38, 1509–1517. Blumberg, S. J., Welch, E. M., Chowdhury, S. R., Upchurch, H. L., Parker, E. K., & Skalland, B. J. (2008). Design and operation of the National Survey of Children with Special Health Care Needs, 2005–2006. Vital and health statistics Ser 1, Programs and collection procedures, pp 1–188.
643 Brachlow, A. E., Ness, K. K., McPheeters, M. L., & Gurney, J. G. (2007). Comparison of indicators for a primary care medical home between children with autism or asthma and other special health care needs. Archives of Pediatrics and Adolescent Medicine, 161, 399–404. CDC. (2012). Prevalence of autism spectrum disorders–Autism and Developmental Disabilities Monitoring Network, 14 sites, United States, 2008. MMWR Surveill Summary, 61, 1–19. Child and Adolescent Health Measurement Initiative (2009a). Measuring medical home for children and youth A resource manual for child health program leaders, researchers and analysts (pp 1–55). Oregon Health and Science University. Child and Adolescent Health Measurement Initiative (2009b). Measuring medical home for children and youth. A resource manual for child health program leaders, researchers and analysts. http://www.childhealthdata.org/docs/medical-home/mhmanual_ withappendices-updated-12-7-10-pdf. Child and Adolescent Health Measurement Initiative (2012) National profile of children with special health care needs and autism spectrum disorders: Key findings from the 2009/10 NS-CSHCN & 2007 NSCH. Data Resource Center. Chiri, G., & Warfield, M. E. (2012). Unmet need and problems accessing core health care services for children with autism spectrum disorder. Maternal and Child Health Journal, 16, 1081–1091. doi:10.1007/s10995-011-0833-6. Cidav, Z., Lawer, L., Marcus, S. C., & Mandell, D. S. (2013). Agerelated variation in health service use and associated expenditures among children with autism. Journal of Autism and Developmental Disorders, 43, 924–931. doi:10.1007/s10803012-1637-2. Cohen, E., et al. (2011). Children with medical complexity: An emerging population for clinical and research initiatives. Pediatrics, 127, 529–538. doi:10.1542/peds.2010-0910. Coury, D., Jones, N. E., Klatka, K., Winklosky, B., & Perrin, J. M. (2009). Healthcare for children with autism: The Autism Treatment Network. Current Opinion in Pediatrics, 21, 828–832. doi:10.1097/MOP.0b013e328331eaaa. Farmer, J., Clark, M., Drewel, E., Swenson, T., & Ge, B. (2011). Consultative care coordination through the medical home for CSHCN: A randomized controlled trial. Maternal and Child Health Journal, 15, 1110–1118. doi:10.1007/s10995-010-06588. Farmer, J. E., et al. (2013). The relationship between the medical home and unmet needs for children with autism spectrum disorders. Maternal and Child Health Journal,. doi:10.1007/ s10995-013-1292-z. Fisher, E. S. (2008). Building a medical neighborhood for the medical home. The New England Journal of Medicine, 359, 1202–1205. doi:10.1056/NEJMp0806233. Golnik, A., Scal, P., Wey, A., & Gaillard, P. (2012). Autism-specific primary care medical home intervention. Journal of Autism and Developmental Disorders, 42, 1087–1093. doi:10.1007/s10803011-1351-5. Graubard, B. I., & Korn, E. L. (1996). Survey inference for subpopulations. American Journal of Epidemiology, 144, 102–106. Gurney, J. G., McPheeters, M. L., & Davis, M. M. (2006). Parental report of health conditions and health care use among children with and without autism. Archives of Pediatrics, 160, 825–830. Harel, Y., et al. (1994). The effects of recall on estimating annual nonfatal injury rates for children and adolescents. American Journal of Public Health, 84, 599–605. Health Resources and Services Administration, Maternal and Child Health Bureau, Conducted by the National Center for Health Statistics, Centers for Disease Control and Prevention (2011). 2009–2010 National Survey of Children with Special Health
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644 Care Needs. http://www.cdc.gov/nchs/data/slaits/NS_CSHCN_ Questionnaire_09_10.pdf. Homer, C. J., et al. (2008). A review of the evidence for the medical home for children with special health care needs. Pediatrics, 122, e922–e937. Howlin, P. (2005). Outcomes in autism spectrum disorders. In: Volkmar, F.R., Paul, R., Klin, A., & Cohen, D. (eds) Handbook of autism and pervasive developmental disorders. (Vol. 1, 3rd edn., pp 201–220). Hoboken, NJ: Wiley Kogan, M. D., Strickland, B. B., Blumberg, S. J., Singh, G. K., Perrin, J. M., & van Dyck, P. C. (2008). A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005 2006. Pediatrics, 122, e1149–e1158. Krauss, M. W., Gulley, S., Sciegaj, M., & Wells, N. (2003). Access to specialty medical care for children with mental retardation, autism, and other special health care needs. Mental Retardation, 41, 329–339. McGrath, R. J., Laflamme, D. J., Schwartz, A. P., Stransky, M., & Moeschler, J. B. (2009). Access to genetic counseling for children with autism, down syndrome, and intellectual disabilities. Pediatrics, 124(Suppl 4), S443–S449. Medicaid, C. f. M. (2012). CHIP eligibility standards. In. http:// medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/ Childrens-Health-Insurance-Program-CHIP/CHIP-EligibilityStandards-.html. Accessed July 26 2013.
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J Autism Dev Disord (2015) 45:636–644 Montes, G., Halterman, J. S., & Magyar, C. I. (2009). Access to and satisfaction with school and community health services for US children with ASD. Pediatrics, 124(Suppl 4), S407–S413. doi:10.1542/peds.2009-1255L. Noble, D. J., & Casalino, L. P. (2013). Can accountable care organizations improve population health? Should they try? JAMA, The Journal of the American Medical Association, 309, 1119–1120. doi:10.1001/jama.2013.592. Odom, S., Collet-Klingenberg, L., Rogers, S. J., & Hatton, D. D. (2010). Evidence-based practices in interventions for children and youth with autism spectrum disorders. Preventing School Failure: Alternative Education for Children and Youth, 54, 275–282. Pediatrics, A. A. o. (2013). National Center for Medical Home Implementation: Autism information. In. http://www.medicalho meinfo.org/about/cocwd/autism.aspx. Accessed August 6 2013. Ruble, L. A., Heflinger, C. A., Renfrew, J. W., & Saunders, R. C. (2005). Access and service use by children with autism spectrum disorders in medicaid managed care. Journal of Autism and Developmental Disorders, 35, 3–13. Sheldrick, R. C., & Perrin, E. C. (2010). Medical home services for children with behavioral health conditions. Journal of Developmental and Behavioral Pediatrics, 31, 92–99. Taylor, E., Lake, T., Nysenbaum, J., Peterson, G., & Meyers, D. (2011). Coordinating care in the medical neighborhood: Critical components and available mechanisms. White paper AHRQ publication.
ORIGINAL PAPER
The Impact of the Medical Home on Access to Care for Children with Autism Spectrum Disorders Nancy C. Cheak-Zamora • Janet E. Farmer
Published online: 24 August 2014 Ó Springer Science+Business Media New York 2014
Abstract Children with autism spectrum disorders (ASD) experience difficulty accessing health care services. Using parent-reported data from the 2009–2010 National Survey of Children with Special Health Care Needs, we examined whether having a medical home reduces unmet need for specialty care services for children with ASD (n = 3,055). Descriptive statistics and Chi square tests identified sample characteristics and examined the relationship between unmet needs and a standardized measure of medical home. Logistic regression models explored the individual impact of demographic, condition-specific and medical home variables on unmet need. Parents reported that nearly all children had a need for specialty services, 36 % had an unmet need, and 23.9 % had a medical home. Children who had fewer unmet needs were more likely to have received family-centered and coordinated care through a medical home, and this relationship remained significant even when demographic and condition-specific variables were taken into account. These findings suggest ways to improve access to care for children with ASD through enhanced family-centered and coordinated care within the medical home. N. C. Cheak-Zamora (&) Department of Health Sciences, University of Missouri, 510 Clark Hall, Columbia, MO, USA e-mail: [email protected]; [email protected] N. C. Cheak-Zamora Public Health Program, University of Missouri, 510 Clark Hall, Columbia, MO 65211, USA J. E. Farmer Department of Health Psychology, Research School of Health Professions, University of Missouri, 508 Lewis Hall, Columbia, MO 65211, USA
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Keywords Autism spectrum disorder Delivery of health care Unmet needs Medical home
Introduction Children with autism spectrum disorders (ASD) often require more health and educational services than other children with special health care needs (CSHCN) to reach their full potential (Bitterman et al. 2008; Gurney et al. 2006; Montes et al. 2009). Their service needs are high not only due to core neurobehavioral deficits in social communication and restricted or repetitive behaviors, but also because of associated co-morbid conditions such as speech/ language impairments, anxiety/depression, and medical concerns (Howlin 2005). Adding to the complexity, service needs vary across individuals and over time. For example, Cidav and colleagues examined Medicaid service utilization data for children with ASD at different ages (Cidav et al. 2013). Typical service needs shifted from community-based diagnostic and therapeutic services to psychopharmacological interventions and long-term care across the course of development, and expenditures increased steadily with age. As awareness increases about service patterns, there is also a growing body of literature about the extent of unmet needs for specialty services (Brachlow et al. 2007; Gurney et al. 2006; Kogan et al. 2008; Krauss et al. 2003; Sheldrick and Perrin 2010). Parents of individuals with ASD identify significantly more problems accessing specialized services and supports compared to other CSHCN. Correspondingly, Medicaid managed care data show that children with ASD have difficulty accessing needed diagnostic and behavioral services (Ruble et al. 2005). Poor access to services may be the result of a variety of problems, such as a lack of
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qualified providers, ineffective coordination, and lack of adequate health insurance coverage (Chiri and Warfield 2012; Krauss et al. 2003; McGrath et al. 2009). Demand for specialized services is likely to increase, given the growing prevalence of ASD(CDC 2012) and advances in evidencebased interventions (Odom et al. 2010). Addressing unmet needs will be essential for optimal child and family outcomes. One promising approach to improving access to care for children with ASD is the medical home model, developed by the American Academy of Pediatrics to promote comprehensive, coordinated, and family-centered care in primary care settings. This health care delivery strategy has been shown to offset barriers to care among CSHCN. For the general CSHCN population, the benefits of receiving care through a medical home include fewer unmet needs for specialty services, greater parental satisfaction, better health, lower costs, and decreased health disparities (Farmer et al. 2011; Homer et al. 2008; McGrath et al. 2009; Sheldrick and Perrin 2010). Few studies have examined the impact of the medical home on children with ASD. One striking finding is that children with ASD are half as likely to have a medical home compared to other CSHCN, even after controlling for other factors that affect health care access (Brachlow et al. 2007; Child and Adolescent Health Measurement Initiative 2012; Kogan et al. 2008). Typically, children with ASD have a usual source of care, but they lack key components of the medical home such as family-centered, comprehensive, and coordinated care. Results from studies of children with ASD with a medical home have been positive. For instance, one ASDspecific medical home intervention tailored the principles of the medical home model to the individual needs of children with ASD by creating care plans, treatment monitoring logs, coordination assistance for clinical and community services, and ASD-friendly appointments (Golnik et al. 2012). Families receiving the intervention reported greater satisfaction with care and more participation in decision making, compared to families who did not receive the intervention. Although the families receiving the intervention reported fewer unmet service needs, the difference between the groups was not statistically significant perhaps because of the relatively small sample size. Another study found that access to care from medical specialists and genetic counseling improved for children with ASD who had a medical home (McGrath et al. 2009). This study examined a limited range of specialty services and did not measure access to services frequently utilized by children with ASD (e.g., mental health). To address this gap, Farmer and colleagues investigated access to primary and specialty care services among children with ASD enrolled in the Interactive Autism Network
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(IAN), an online autism research registry (Farmer et al. 2013). They found that 63 % of children had unmet needs for specialty services, and the highest unmet need was for behavioral therapy. Less than one in five children had a medical home, but those who did were more likely to have access to needed services. The purpose of this study was to extend previous research on the relationship between access to a medical home and unmet needs for a broad range of specialty services among a nationally representative sample of children with ASD. Based on the literature, we hypothesized that access to a medical home will be associated with fewer unmet needs for children with ASD.
Methods Data Source and Sample The 2009/10 NS-CSHCN was sponsored by the Maternal and Child Health Bureau and conducted by the Center for Disease Control and Prevention’s National Center for Health Statistics. The survey utilized a computer-assisted land-line telephone interview technology supplemented with an independent random digit-dial sample of cell phone numbers, to randomly sample nationally representative households evenly distributed across the 50 states and the District of Columbia (Blumberg et al. 2008). Initial screening questions identified parents or legal guardians of CSHCN, age 0–17. Of these, 40,242 parents completed indepth interviews about their CSHCN. The current study examines only children and youth with ASD; thus, the sample was further limited to those with a current ASD diagnosis (n = 3,055). The Institutional Review Board at the university involved in this project approved all study procedures and all persons included in the study gave their informed consent prior to their inclusion in the study. Measures Outcome Measure The unmet need outcome is a composite measure of 12 variables representing an unmet need for one or more specialty services. Parents were asked if their child had a need for one or more specialty services in the last 12 months. If a need for a particular service was reported, the caregiver was asked if the child received all needed care for that service. If the caregiver answered ‘‘no’’ (did not receive all needed care), the child was rated as having an unmet need in that service (Health Resources and Services Administration et al. 2011). Specialty services included: non-preventative dental/orthodontia care,
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communication aids/devices, durable medical equipment, hearing aids/care, home health care, prescription medication, mental health/counseling, mobility aids/devices, specialty doctors, therapy (physical, occupational, or speech therapy; PT/OT/SP), substance abuse treatment/counseling, and eye glasses/vision care. Unmet need was examined for each individual service and as a summary variable that combined all services to obtain the total number of unmet needs. This variable was then dichotomized (no unmet needs vs. one or more unmet needs) to examine what explanatory variables were associated with having unmet needs within a logistic regression analysis. Explanatory Variables
J Autism Dev Disord (2015) 45:636–644 Table 1 Demographic and condition specific variables for children with ASD
Data Analysis We utilized descriptive statistics to report the characteristics of children with ASD within the national survey. Additionally, we examined the proportion of children with a need for specialty services, those with an unmet need (outcome measure) and those with access to a medical home and its component measures. Analysis of variance
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Weighted n
Percent
2,463 589
675,777 163,037
80.6 19.4
Demographic variables Gender Male Female Minority status White Minority
2,202
526,044
62.7
853
313,229
37.3
2,253
579,601
70.1
761
247,051
29.9
Household structure Two parent Single or other
Variables previously associated with unmet needs for specialty services for CSHCN were included in initial analysis (Farmer et al. 2011; Homer et al. 2008; McGrath et al. 2009; Sheldrick and Perrin 2010). Child and familylevel demographic variables included: age, gender, minority status, household structure, family annual income, mother’s education and health insurance coverage. Condition-specific factors were assessed using indicators (a) severity of condition and (b) need for child and family services. Severity-related variables included ASD severity, number of co-morbidities, and impact of condition on daily activities. For need-related variables, the child’s total need for specialty services was defined as the number of services needed (range 1–12). Caregivers also reported the need for family mental health, respite care and genetic counseling services during the last 12 months and whether they received care for each needed service. We developed one variable for each of the family-related services that indicated whether the service was not needed, needed and received, or needed and unmet. Quality of care was assessed by examining a standardized measure of the medical home developed by the Child and Adolescent Health Measurement Initiative (CAHMI). Components of this measure included: access to a personal doctor/nurse, usual source of care, referral problems, receipt of familycentered care, and care coordination. A medical home composite is based on a combination of the five components (Child and Adolescent Health Measurement Initiative 2009a, b).
Sample n
Annual family income [100 %FPL
489
158,819
18.9
100–199 %FPL
639
181,788
21.7
200–399 %FPL
984
266,255
31.7
400 % or \ FPL
943
232,410
27.7
Education level Less than high school High school graduation More than high school
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65,383
7.8
382 2550
134,682 639,209
16.0 76.2
1,993
516,584
61.6
973
299,570
35.7
86
22,504
2.7
Health insurance type Private or private/public Public or other Uninsured Condition specific variables Daily activities Never affected
192
50,729
6.1
Moderately affected some of the time
815
211,192
25.2
Consistently affected, often/great deal
2,036
574,545
68.7
Mild
1,587
411,881
49.5
Moderate
1,092
300,941
36.2
358
119,272
14.3
Severity of ASD
Severe
and Chi square tests examined the association between unmet needs and medical home variables. Three logistic regression models were constructed to examine the strength of the relationship between the medical home components and unmet need for specialty services. The models were built to test the individual and additive effects of (a) demographic factors, (b) conditionspecific factors, and (c) the medical home components. Univariate analysis was used to develop a parsimonious regression models. Only variables with a significant association with unmet need were retained in the regression. Classification tables were included in each logistic
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regression to compare the predictive accuracy of each model and between models. This was calculated by classifying observations with [50 % (predicted) probability of unmet needs as having unmet needs and those with B50 % probability as having no unmet needs. Only children with at least one need for a specialty service were included in these analyses (61 children (2 %) were excluded). Statistical methods that incorporated weighted estimates were used via the SPSS Complex Samples Module (SPSS Statistics, IBM Corporation, Armonk, NY) (Graubard and Korn 1996).
Results Demographic and condition-specific characteristics of children with ASD are described in Table 1. The average age of children within this sample was 9.77 years (SD = 0.1). Further, participants had on average three comorbid
conditions in addition to their ASD diagnosis. Although the majority of mothers had some college or trade-level education, household income was evenly distributed across all categories. Unmet Needs Nearly all children with ASD had a specialty service need (98 %) with the average child needing nearly four of the 12 possible services (Table 2). Just over a third (36 %) of these children had unmet needs. Unmet needs were highest for: home health services, substance abuse counseling, communication aids/devices, PT/OT/SP services, dental care and mental health services. Access to a Medical Home Just under a quarter (23.9 %) of children with ASD had access to a medical home (Table 3). The vast majority of children met criteria for having a personal doctor/nurse
Table 2 Specialty service needs Percent with service need (SE)
Percent with unmet need (SE)
Children’s specific specialty service needs (n = 2,994)a Total
98.0 (0.1)
36.4 (0.5)
Medications
78.4 (1.3)
4.9 (0.9)
PT/OT/SP
78.4 (1.2)
24.4 (1.6)
Specialty doctor
58.4 (1.6)
12.8 (1.4)
Mental health
54.3 (1.6)
21.9 (2.0)
Table 3 Children’s access to a primary care medical home Medical home components
Weighted n
Percent
(1) Child has a personal doctor or nurse
788,542
94.0
(2) Child has a usual source for both sick and well care
753,738
90.0
(3) No problem obtaining referrals, or no referrals needed
244,960
72.0
(4) Family-centered carea
402,966
49.0
(i) Provider spends enough time
563,954
68.0
669,415 688,213
80.0 83.0
Vision
35.4 (1.6)
7.1 (1.5)
Dental care
24.6 (1.3)
23.4 (2.7)
Communication aids/devices
13.1 (1.1)
24.9 (3.7)
(ii) Provider listens carefully (iii) Provider is sensitive to family values
Home health
11.1 (1.4)
29.3 (8.5)
(iv) Provider provides needed information
563,026
68.0
(v) Provider partners with family
658,330
79.0
292,767
36.9
Durable medical
9.3 (1.4)
6.4 (2.0)
Hearing
6.2 (0.8)
13.8 (4.9)
(5) Coordinated careb
Mobility
3.7 (0.6)
17.6 (9.4)
Care coordination help
Substance abuse/counseling 3.2 (0.8) Family’s specific support service needs (n = 1,330)b
26.0 (11.9)
Total
43.5 (0.5)
63.2 (0.5)
Family mental health services
57.1 (2.7)
38.8 (3.1)
Respite care
55.0 (2.5)
58.0 (3.6)
Genetic counseling
26.6 (2.1)
44.4 (4.7)
Mean (SD)
Range
Child needs for specialty services
3.69 (.07)
0–12
Unmet child needs Family needs for support services
0.69 (.04) 0.63 (.03)
0–8 0–3
Unmet family needs
0.30 (.02)
0–3
a
61 children (2 %) had no specialty service needs
b
1,727 parents (56 %) reported no family support service needs
(i) Receive adequate care coordination
183,353
21.9
(ii) No care coordination needed
370,831
44.3
(i) Very satisfied with communication between doctors, if needed
359,744
46.7
(ii) Very satisfied with communication with schools/others, if needed
206,542
43.5
193,513
23.9
Communication satisfaction
Medical home composite a
Family-centered care component was met by positively answering all 6 of the sub-items (i–v)
b
The coordinated care component was met in one of two ways: (a) ratings indicating adequate care coordination on a composite of 10 survey items, or (b) rating indicating no care coordination was needed. Parents of children who used less than two services do not rate these items, and their children are counted as having a medical home if criteria for the other four components are met
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Table 4 Adjusted OR of children with ASD with one or more unmet needs for specialty services Model 1
Model 2
Model 3
.99 (.96–1.03)
.97 (.93–1.01)
.97 (.93–1.01)
Male
Ref
Ref
Ref
Female
1.08 (.76–1.53)
1.23 (.87–1.76)
1.19 (.82–1.74)
White
Ref
Ref
Ref
Minority
1.00 (.73–1.36)
1.12 (.81–1.54)
1.15 (.82–1.62)
Ref
Ref
Ref
1.37 (.98–1.93)
1.12 (.78–1.60)
1.13 (.76–1.68)
400 % or \FPL
Ref
Ref
Ref
200–399 %FPL
1.63 (1.14–.2.33)*
1.51 (1.07–2.13)*
1.56 (1.08–2.25)*
Demographic variables Age Gender
Minority status
Household structure Two parent Single or other Annual family income
100–199 %FPL
1.08 (.70–1.66)
.88 (.56–1.40)
.88 (.55–1.41)
[100 %FPL
1.09 (.63–1.91)
.92 (.52–1.62)
.93 (.50–1.75)
More than high school
Ref
Ref
Ref
High school
.87 (.57–1.33)
1.17 (.76–1.82)
1.07 (.67–1.70)
Less than high school
.77 (.39–1.52)
.86 (.36–2.08)
.70 (.27–1.85)
Private or private/public
Ref
Ref
Ref
Public or other
1.49 (1.00–2.23)***
1.33 (.92–1.93)
1.42 (.96–2.10)
Uninsured
4.86 (2.33–10.14)***
4.42 (2.30–8.51)***
3.91 (1.90–8.04)***
Never affected Moderately affected, some of the time
Ref 1.02 (.50–2.06)
Ref .65 (.31–1.38)
Consistently affected, often/great deal
1.43 (.71–2.87)
.94 (.45–1.96) Ref
Education level
Health insurance type
Condition specific variables-child Daily activities
Severity of ASD Mild
Ref
Moderate
1.22 (.89–1.69)
1.26 (.88–1.79)
Severe
1.06 (.64–1.76)
.96 (.57–1.61)
Comorbid conditions
1.02 (.93–1.12)
1.02 (.93–1.12)
Total need for services
1.36 (1.22–1.51)***
1.33 (1.19–1.49)***
No need
Ref
Ref
Need and received care
1.04 (.70–1.54)
.98 (.64–1.50)
Unmet need for care
6.30 (3.66–10.84)***
4.21 (2.44–7.30)***
No need Need and received care
Ref 1.18 (.73–1.93)
Ref 1.24 (.75–2.07)
Unmet need for care
3.57 (2.38–5.36)***
2.82 (1.84–4.31)***
Ref
Ref
Condition specific variables–family Family mental health services
Respite care
Genetic counseling No need Need and received care Unmet need for care
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.86 (.47–1.57)
.78 (.41–1.50)
1.80 (.89–3.67)
1.25 (.61–2.54)
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Table 4 continued Model 1
Model 2
Model 3
Medical home variables Personal doctor or nurse Yes No
Ref .69 (.31–1.57)
Usual source for sick and well care Yes
Ref
No
1.21 (.77–1.91)
Referral problems Yes
Ref
No
1.47 (.95–2.28)
Family centered care Yes
Ref
No
1.86 (1.33–2.59)***
Care coordination Yes
Ref
No Percent correctly classified
2.64 (1.76–3.97)*** 67.50 %
75.70 %
76.50 %
* p \ .05; ** p \ .01; *** p \ .001
(94 %), a usual source of care (90 %), and no problems obtaining referrals (72 %). Family-centered and coordinated care was more difficult to obtain with 49 and 37 % of caregivers reporting receiving these services respectively. Associations Between Unmet Needs and Access to a Medical Home Between Group Differences Only 11 % of children with a medical home had unmet needs compared to 89 % without a medical home (F(1, 3004) = 91, p \ .01). When examining the components of the medical home, having a personal doctor/nurse and a usual source of care was not associated with unmet needs. In contrast, access to referrals (F(1, 3004) = 43, p \ .01), family-centered care (F(1, 3004) = 61, p \ .01) and care coordination (F(1, 3004) = 83, p \ .01) were associated with decreased unmet needs. Logistic Regression Within the first multivariate logistic regression, the only demographic variables associated with unmet needs for specialty services were poverty and insurance status (Table 4). Families with income between 200–399 % of the federal poverty level (FPL) had significantly higher adjusted odds of reporting unmet needs than those with incomes C400 % (adjusted odds ratios (aOR) 1.63;
p \ .05). Families who reported having public or ‘‘other’’ forms of insurance (aOR 1.49; p \ .01) and those that were uninsured (aOR 4.86; p \ .01) had higher odds of reporting unmet needs compared to families with private insurance. Uninsured children had nearly 5 times greater adjusted odds of reporting unmet needs compared to the privately insured. This initial model correctly classified 67.5 % of children with unmet needs in the sample relative to chance ([50 % probability). The second regression model included demographic and condition-specific variables. The significant variables in Model 2 were consistent within Model 1 with the exception of public/other health insurance which was no longer significantly different from private insurance (Table 4). As number of total service needs increased for children so did the odds of having unmet needs. Families with an unmet need for mental health services and respite care had 6.3 and 3.57 times greater odds of having an unmet need for children’s specialty services than families with no need for these services (p’s \ .001). With the addition of conditionspecific variables, Model 2 accurately classified 75.7 % of children with unmet needs in the sample relative to chance. The final model examined medical home components in addition to variables in Model 2. Significant variables in Model 3 were consistent with Model 2. Of the five medical home components, access to family-centered care and care coordination were significantly associated with unmet needs. Children who lacked family-centered care had 1.86 greater odds of having unmet needs than those with family-
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centered care (p \ .001). Similarly, lack of care coordination increased the odds of having unmet needs 2.65 times (p \ .001). Model 3 had the strongest predictive accuracy of all the regression models with 76.5 % of children with unmet needs correctly classified relative to chance, though the improvement was relatively modest (1 %). A separate analysis used the medical home composite in Model 3 rather than its components. Children without a medical home had 4.4 times greater odds of having unmet needs compared to those with a medical home (aOR 4.39; p \ .01; results not shown).
Discussion Consistent with our hypothesis, access to a medical home was strongly associated with fewer unmet needs among children with ASD. Caregivers reporting services consistent with a medical home were more than four times as likely to report no unmet needs. Perhaps most importantly, this study showed that family-centered care and care coordination components of the medical home are drivers of improved access to specialized services. Unfortunately, these components of the medical home are least available to children with ASD. The importance of family-centered care and care coordination to access to needed services has been demonstrated in other CSHCN(Taylor et al. 2011), but this is the first study to show the importance of these two care processes on unmet needs of children with ASD. Other specific factors associated with unmet needs included insurance status, income level, total need for child services, and unmet need for family mental health care and respite care. Uninsured children had significantly higher unmet needs throughout all analyses and had over 4 times the odds of having unmet needs compared to children with private insurance. It is important to note that there were relatively few uninsured children in our sample and full implementation of the Patient Protection and Accountable Care Act (PPACA) should reduce this number further. Although the number of uninsured children with ASD will be reduced, monitoring this group as well as the underinsured will remain important as access to care may be hindered by many factors including insurance status and deductible and co-payment rates. As might be expected, families with moderate income (200–399 % FPL) were more likely to have children with unmet needs compared to families with a higher income (C400 % FPL), perhaps due to poorer health insurance coverage in the moderate income group. Surprisingly, families with income near or below the FPL (\200 %) were not significantly different than those with the highest income. This is likely due to the fact that these children
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have access to public health insurance through Medicaid or Children’s Health Insurance Program (Medicaid 2012). Our findings validate those obtained in a similar study utilizing data from an online registry (IAN) (Farmer et al. 2013). Less than one in five children had a medical home in both studies (18.9 and 23.9 %, respectively), and both showed a strong association between having a medical home and improved access to care. Similarly, both studies found that children with unmet needs were more likely to have a higher number of total service needs and more frequently lacked family services such as mental health and respite care. High needs have been associated with and may be a proxy for complexity of medical condition for CSHCN (Cohen et al. 2011). This suggests that there may be a subgroup of children with ASD and co-morbidities who have highly complex conditions and are in greatest need of targeted care coordination and family supports. Understanding the role of the medical home for children with ASD is of the utmost importance as we strive to improve patient outcomes through enhanced quality of care. Based on this study, pediatricians and other primary care providers can make a substantial difference in children’s access to specialized services by providing a medical home, with a particular focus on improvements in family-centered and coordinated care. To do so, providers must be trained about ways to address the complex needs of children with ASD. While many resources are being utilized to teach pediatricians how to identify the early signs of ASD, few receive training about effective interventions and care management for this population. Additional training is needed through residency programs, Continuing Medical Education, and national educational programs such as those developed by the Autism Treatment Network and American Academy of Pediatrics (Coury et al. 2009; Pediatrics 2013). Further, both small and large health care organizations would benefit greatly from more integrated health care systems with designated care coordinators for high-needs patients such as those with ASD. The passage of the PPACA has created a paradigm shift in which quality and connectivity of needed services are the focal point. The PPACA has increased payment models for Accountable Care Organizations (ACO)–groups of providers administering comprehensive and coordinated team-based care within a ‘‘medical neighborhood.’’(Fisher 2008; Taylor et al. 2011) These groups focus on providing preventative and rehabilitative care when it is needed thus avoiding increased emergency room or complication-related costs. ACO’s have increased considerably and have the potential to promote coordinated care as they demonstrate their effectiveness and efficiency (Noble and Casalino 2013). Lastly, for quality care to improve for all children, pediatricians and other primary care providers must be
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reimbursed relative to the level of care they provide. If providing quality care through a medical home is important to patients and the health care system, as this study shows, it must be compensated accordingly. There are limitations to the study findings. First, the cross-sectional nature of this study only allows for the examination of correlational not causal factors. Second, as with all surveys, parent reports were used and are subjective in nature. This maybe a particular problem for reports of need for services within the last 12 months as recall across a long time period may be unstable (Harel et al. 1994). Third, need for behavioral health services was shown to be the greatest unmet need in the previous study but this service is not measured within the national survey (Farmer et al. 2013). This likely resulted in an underestimate of service and unmet needs within our study. Despite these limitations, this study makes a unique contribution because it examines the impact of the medical home on access to care using up-to-date data from one of the largest, nationally representative samples of children with ASD.
Conclusion Strengthening the medical home through enhanced training, supports for care coordination and better reimbursement will no doubt reduce unmet needs and improve quality of life for children with ASD and their families. Future research should identify best practices that support effective and cost-efficient provision of family-centered and coordinated care through the medical home. Acknowledgments The authors would like to express their appreciation to Dr. J. Wade Davis for his statistical assistance. Conflict of interest of interest.
The authors declare that they have no conflict
Ethical standard The Institutional Review Board at the university involved in this project approved all study procedures and all persons included in the study gave their informed consent prior to their inclusion in the study.
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