Abstract
Background Pediatric rehabilitation therapy services and mobility aids have an important role in the health of children with special health care needs, and the Affordable Care Act (ACA) may increase coverage for these needs. Identifying the prevalence of and factors associated with therapy and mobility aid needs and unmet needs prior to the full implementation of the ACA will be useful for future evaluation of its impact.
Objective The purpose of this study was to identify the prevalence of and factors associated with caregiver perceived needs and unmet needs for therapy or mobility aids among children with special health care needs living in the United States.
Design A cross-sectional, descriptive, multivariate analysis was conducted.
Methods The 2009–2010 National Survey of Children With Special Health Care Needs was used to identify a nationally representative sample of children with special health care needs with needs for therapy (weighted n=2,603,605) or mobility aids (weighted n=437,971). Odds of having unmet needs associated with child and family characteristics were estimated.
Results Nearly 1 in 5 children with therapy needs had unmet needs, and nearly 1 in 10 children with mobility aid needs had unmet needs. Unmet needs were most strongly associated with how frequently the condition affected function and being uninsured in the previous year.
Limitations Data were caregiver reported and not verified by clinical assessment. Survey data grouped physical therapy, occupational therapy, and speech therapy; analysis was not discipline specific.
Conclusions This evidence serves as a baseline about the future impact of the ACA. Pediatric rehabilitation professionals should be aware that children with special health care needs whose condition more frequently affects function and who have insurance discontinuity may need more support to meet therapy or mobility aid needs.
Therapy services and mobility aids can positively contribute to the health and well-being of children with special health care needs. Current evidence about perceived unmet needs for therapy or mobility aids of children with special health care needs living in the United States was reported in 2004 on implementation of the State Children's Health Insurance Program (SCHIP).1 At the time of enrollment in the SCHIP, a high proportion of caregivers of children with special health care needs reported some unmet health care need during the year before the SCHIP (43%–62% depending on the state), with the most common reasons for unmet needs being financial barriers.2 With the upcoming expansion of Medicaid and extension of the SCHIP under the Affordable Care Act (ACA),3 fewer children with special health care needs might be uninsured or underinsured.
Establishing benchmarks for perceived therapy service and mobility aid needs prior to the full implementation of the ACA is needed. Identifying associated factors with perceived unmet therapy and mobility aid needs will allow pediatric rehabilitation providers, program directors, and policy makers to assist children and families who are more likely to have unmet needs navigate the new health care system more effectively. This evidence also will identify subpopulations that may require special considerations under the ACA due to their unique needs. To date, no published studies have examined perceived unmet needs for therapy or mobility aids in the period after the implementation of the SCHIP and prior to the implementation of the ACA.
Analysis of population-level data sets can identify the mutable and immutable child, family, and environmental characteristics associated with families' perceptions of services. Health services research can contribute to comparative effectiveness research about pediatric rehabilitation services and provide more information about the patterns of care and associated patient-reported unmet needs or outcomes.4 This evidence can then inform practice and policy at national, state, and local levels and may promote improved service delivery for children with special health care needs.
The National Survey of Children With Special Health Care Needs (NS-CSHCN) is a telephone survey conducted by the National Center of Health Statistics at the Centers for Disease Control and Prevention under the direction and sponsorship of the federal Maternal and Child Health Bureau.5,6 Survey results are weighted to represent the population of noninstitutionalized children (≤17 years of age) who are classified as having one or more special health care needs nationally and in each state. The NS-CSHCN gathers caregiver-reported data on the physical, emotional, and behavioral health and functional status of children with special health care needs in the United States. It includes items related to high-quality health care, coordination of services, access to a medical home, transition services for youth, and impact of chronic conditions on the child's family. Of interest to pediatric rehabilitation providers are data related to caregivers' perceptions of needs for therapy or mobility aids.
Descriptive analysis of these data will provide benchmarks prior to the implementation of the ACA about perceived needs and unmet needs. Hence, the purpose of this study was to report: (1) the prevalence of perceived therapy or mobility aid needs and unmet needs, (2) child and family characteristics related to perceived unmet needs for therapy or mobility aids, and (3) reasons for perceived unmet needs for therapy services in a nationally representative sample of children with special health care needs derived from the 2009–2010 NS-CSHCN.
Method
The study design was a cross-sectional descriptive study of children with special health care needs who had caregiver-reported needs for therapy or mobility aids. A data use agreement was obtained to use the NS-CSHCN.
Data Source and Sample Selection
The 2009–2010 NS-CSHCN was a national telephone survey conducted for the third time (previously conducted in 2000–2001 and 2005–2006) that used a complex survey design with stratification by state and sample type (landline or cell phone) to generate population estimates for children with special health care needs. Independent random samples were taken in all 50 states and the District of Columbia. Telephone numbers were randomly generated and called to find households with one or more children under 18 years of age. Trained interviewers asked parents or guardians a series of questions for all children in the household to identify those with special health care needs. Interviews were conducted by trained personnel in English, Spanish, Mandarin, Cantonese, Vietnamese, and Korean and took about 35 minutes to complete. Of the 372,698 children from 196,195 households screened between 2009 and 2010, 40,242 children were categorized as having a special health care need and completed the full interview. Additional information regarding survey methodology has previously been described,7 and the survey questions can be accessed online.8 Questions selected to derive the study samples and classify by condition type are listed in the Appendix.
A group of children with special health care needs who had caregiver-reported need for therapy and a group with reported need for mobility aids were identified. Therapy need was identified based on a positive response to the following question: “During the past 12 months/since [his/her] birth, was there any time when [child] needed physical therapy, occupational therapy, or speech therapy [C4Q05_5]?” We identified 2,603,605 (weighted n) children who had a reported need for therapy. Additionally, children who needed mobility aids were identified based on the response to the following question: “During the past 12 months, was there any time when [child] needed mobility aids or devices, such as canes, crutches, wheelchairs, or scooters [C4Q05_11]?” We identified 437,971 (weighted n) children who had a reported need for mobility aids.
Unmet need for physical therapy, occupational therapy, and speech therapy services.
Therapy needs were classified as met or unmet based on the response of “yes” or “no” to the following question: “Did [child] receive all the therapy that he/she needed [C4Q05_5A]?” Caregivers who reported an unmet need for therapy were asked to identify the reasons, ranging from cost, access, transportation, lack of information or providers, family priorities, and child health, in a series of 18 follow-up questions [C4Q05_5BR01–18].
Unmet need for mobility aids.
Mobility aid needs were classified as met or unmet based on the response to the following question: “Did [child] receive all the mobility aids or devices that he/she needed [C4Q05_11A]?” Survey questions related to mobility aids were asked only of caregivers with children who were 3 years of age or older.6
Child and Family Characteristics
The selection of child and family characteristics was based on previous research examining therapy use among children with special health care needs1,9,10 and included: (1) condition type, (2) level of severity of condition, (3) sex, (4) age, (5) race and ethnicity, (6) caregiver education, (7) household income, (8) insurance status and type, and (9) usual source of medical care by a primary care physician.
Condition type was categorized as developmental disability, developmental delay, or medical condition, and each category was mutually exclusive. Children with special health care needs whose caregivers reported they currently had the following diagnoses were classified as having developmental disability: cerebral palsy, Down syndrome, autism, traumatic brain injury, cystic fibrosis, muscular dystrophy, arthritis, cardiac anomalies, intellectual disability, or attention-deficit/hyperactivity disorder.
Children with special health care needs without the above diagnoses, but for whom caregivers reported a current diagnosis of developmental delay [K2Q36B] or for whom caregivers reported had “a lot” or “a little” difficulty with self-care activities [C3Q27], using arms or legs [C3Q28, C3Q29], learning [C3Q30], or understanding or speaking language [C3Q31] were classified as having a developmental delay. Children with special health care needs with developmental disability often have a co-occurring developmental delay. In this analysis, they were classified as having a developmental disability. Children with a developmental delay only (ie, no co-occurring developmental disability) were categorized as having a developmental delay.
Children with special health care needs without a diagnosed developmental disability and without diagnosed or reported developmental delay, but who currently had one or more conditions (ie, anxiety, depression, migraines, behavior problems, blood disorder, epilepsy, asthma, allergies, or diabetes), were classified as having a medical condition.
Severity of the child's special health care need was defined as how often the condition affected the child's ability to function and was categorized as severe (affected the child always), moderate (affected the child usually), or mild (affected the child some of the time). We also included each child's sex (male or female). Age was grouped as less than 3 years; between 3 and 5 years; between 6 and 11 years; and between 12 and 17 years.
Child race and ethnicity were categorized as black non-Hispanic, white non-Hispanic, Hispanic, and other non-Hispanic (including Asian and multirace). Highest caregiver educational attainment was categorized as less than high school, high school, or more than high school. Family income was categorized as <100% federal poverty level (FPL), between 100% and 199% FPL, between 200% and 399% FPL, or 400% FPL and greater.
We included 2 covariates to capture insurance type and status. First, insurance type was grouped as uninsured (reflects children who were uninsured for the entire previous 12 months), private insurance only, public insurance only, and both public and private insurance. Continuity of health insurance coverage was categorized as continuously insured in the previous 12 months or uninsured at some point in the previous 12 months. Finally, we included a measure that reflected whether the child had a usual source of care.
Analytic Approach
Population estimates were reported for the selected child and family characteristics for each sample (children with special health care needs who had therapy needs and those who had mobility aid needs). Perceived unmet needs for therapy or mobility aids were described using population estimates by age ranges, given the variability in practice and policy across childhood.
Adjusted odds ratio (OR) values were calculated using multivariate logistic regression to identify characteristics associated with increased odds of perceived unmet therapy needs or unmet needs for mobility aids. Adjusted logistic regression estimated the odds of perceived unmet therapy needs, controlling for: condition type, condition severity, sex, child's age, race and ethnicity, highest level of caregiver education, household income, health insurance status and type, and being uninsured at some point during the previous 12 months. Adjusted logistic regression estimated the odds of perceived unmet mobility aid needs controlling for condition severity and being uninsured at some point during the last 12 months. Given the proportion of reported unmet needs within the 2 samples, we had sufficiently large sample sizes to account for 10 covariates for children whose caregivers reported unmet needs for therapy (unweighted calculated size needed: 585) and the 2 selected covariates for unmet mobility aid needs (unweighted calculated size needed: 150).11
Population estimates for the 5 most commonly reported reasons for perceived unmet needs for therapy were determined. Adjusted OR values were calculated with multivariate logistic regression to identify characteristics associated with increased odds of various reasons reported for unmet therapy needs. Adjusted logistic regressions estimated the odds for each of the 5 most commonly reported reasons for perceived unmet therapy needs, controlling for: child's age, condition severity, and being uninsured at some point during the previous 12 months. All analyses were conducted in SAS version 9.312 (SAS Institute Inc, Cary, North Carolina) using survey procedures to account for the complex sampling scheme of the NS-CSHCN.
Results
Of the 40,242 children in the 2009–2010 NS-CSHCN, 36,913 had complete information on all variables of interest. More children with special health care needs had a reported need for therapy (weighted n=2,603,605) compared with those who had a reported need for mobility aids (weighted n=437,971). The weighted population estimates of the child and family characteristics for children with special health care needs who had reported needs for therapy or mobility aids are listed in Table 1. More than 70% of the children with a need for therapy or mobility aids had a diagnosis of developmental disability. Of the children whose caregiver reported a need for therapy, the majority experienced a functional impact from their condition most of the time (46.4% “usually” and 33.5% “always”). The majority of children with caregiver-reported need for therapy (65.4%) were male, nearly half (45.9%) were 6 to 11 years of age, and almost one-third (29.9%) were 12 to 17 years of age.
Population Estimates of Characteristics of a Nationally Representative Sample of Children With Special Health Care Needs and Caregiver-Reported Need for Therapy or Mobility Aidsa
Unmet Need for Physical Therapy, Occupational Therapy, and Speech Therapy Services
The population estimates of unmet needs for therapy and mobility aids in the sample are listed, by age range, in Table 2. About 1 in 5 children with caregiver-reported therapy needs had a reported unmet need (17.7%). Perceived unmet therapy needs were relatively evenly distributed across age ranges, with the youngest children (less than 3 years old) having the lowest reported unmet need for therapy (15.8%) and children aged 3 to 5 years having the highest reported unmet need for therapy (20.9%).
Population Estimates of Perceived Unmet Need for Therapy and Unmet Need for Mobility Aids Among a Nationally Representative Sample of Children With Special Health Care Needs and Caregiver-Reported Need for Therapy or Mobility Aids, by Age Groupa
The adjusted odds of perceived unmet need for therapy are presented in Table 3. Children with a diagnosed developmental disability had nearly 3 times higher odds (OR=2.84; 95% confidence interval [CI]=1.1, 7.3) of having an unmet therapy need than children with medical conditions.
Adjusted OR (95% CI) Values for Perceived Unmet Need for Therapy Services Among a National Sample of Children With Special Health Care Needs Whose Caregivers Reported Need for Therapy (Weighted n=2,603,605), by Child or Family Characteristica
Children with special health care needs whose condition always affected their function had nearly 3 times higher odds (OR=2.80; 95% CI=2.0, 4.0) of having an unmet therapy need than those whose condition affected their function very little of the time. Children whose condition usually affected their function had nearly 2 times higher odds (OR=1.69; 95% CI=1.2, 2.4) of having an unmet therapy need than those whose condition affected their function very little of the time.
Compared with the oldest children (12–17 years), 3- to 5-year-olds had higher odds (OR=1.50; 95% CI=1.1, 2.1) of having unmet therapy needs. Compared with white non-Hispanic children, the odds of unmet need for therapy were 30% higher for black non-Hispanic children (OR=1.34; 95% CI=1.0, 1.9).
Children who were uninsured at any point during the previous 12 months had more than a 2-fold higher adjusted odds (OR=2.26; 95% CI=1.6, 3.2) of unmet therapy needs compared with continuously insured children. Children with household incomes between 200% and 399% FPL had nearly 50% higher odds (OR=1.44; 95% CI=1.1, 2.0) of unmet therapy needs than their peers with household incomes greater than 400% FPL.
Unmet Need for Mobility Aids
Nearly 1 in 10 caregivers of children with special health care needs who had mobility aid needs (7.7%) had a reported unmet need. Children with reported mobility aid needs aged 3 to 5 years had the highest percentage of caregiver-reported unmet mobility aid need (12.1%). The adjusted odds of unmet need for mobility devices are presented in Table 4. After controlling for the frequency with which the condition affected the child's function and being uninsured at any point during the previous year, children whose condition always affected their function had nearly 6 times higher odds (OR=5.82; 95% CI=2.3, 14.6) of having an unmet mobility aid need than those whose condition affected their function very little of the time.
Multivariable OR (95% CI) Values for Unmet Need for Mobility Aids Among a Nationally Representative Sample of Children With Special Health Care Needs Whose Caregivers Reported Need for Mobility Aids (Weighted n=437,971)a
The most commonly reported reason for unmet need for therapy was cost (23.1%), followed by lack of resources at school (17.3%), unavailability of services or transportation (15.0%), problems with health plan (14.3%), and appointments unavailable or not convenient (12.2%). These reasons are presented in Table 5, with the adjusted odds of reporting each reason.
Most Commonly Reported Reasons for Unmet Need for Therapy Among a Nationally Representative Sample of Children With Special Health Care Needs With Parent-Reported Unmet Need for Therapy (Weighted n=2,603,605) and Adjusted OR (95% CI) Values for Characteristics Associated With Each Reasona
Children with special health care needs whose condition always affected their function had 4 times higher odds of having caregiver-reported unmet therapy needs related to appointment times (OR=4.02; 95% CI=1.4, 11.2) and lack of school resources (OR=3.94; 95% CI=1.9, 8.0) compared with their peers whose condition affected their function very little of the time. Children with special health care needs whose condition usually affected their function were more than twice as likely (OR=2.53; 95% CI=1.2, 5.3) to have caregiver-reported unmet therapy needs related to a lack of school resources compared with the children whose condition affected their function very little of the time.
Finally, compared with their peers who were continuously insured, children with discontinuous health insurance coverage had 68% higher odds (OR=1.68; 95% CI=1.1, 2.6) of having caregiver-reported unmet therapy needs because of perceived barriers related to availability of services.
Discussion
This study investigated caregiver-perceived unmet needs for rehabilitation therapy services and mobility aids among a nationally representative sample of children with special health care needs. For those children with caregiver-reported therapy or mobility aid needs, an estimated 17.7% of children with special health care needs in the United States have caregiver-reported unmet therapy needs, and an estimated 7.7% have caregiver-reported unmet mobility aid needs. Of children with reported therapy or mobility aid needs, diagnosis of developmental disability, having a condition that always affected function, and insurance discontinuity were characteristics associated with increased likelihood of unmet therapy or mobility aid needs. Across all age groups, unmet need for therapy was highest among children aged 3 to 5 years.
Our results have some degree of measurement error and are population estimates, and should be interpreted as such. The survey does not validate caregiver-reported needs with clinical information and therapy or mobility aid utilization data. Caregivers with lack of information may not be aware of unmet needs for therapy services or mobility aids, may perceive a need that is not supported by clinician assessment, or may inaccurately recall their child's need and unmet need for therapy. For example, children with special health care needs from households in the 2 lowest income categories were not more likely than those in the highest income category to have reported unmet therapy needs, as might be anticipated. Although the validity of the NS-CSHCN screener questions to identify children with special health care needs has been demonstrated,13 it is possible that these groups under-identify unmet needs.14,15 However, previous literature suggests that caregiver-reported findings can be substantiated by currently available utilization data, so the accuracy of caregiver reporting warrants further investigation.16
We operationalized condition severity with the survey question related to the frequency that the condition affected the child's function. Frequency does not necessarily reflect the magnitude or degree to which function is impaired, and it is possible that condition severity was overestimated in our sample. However, evidence exists to support the association of severity of functional limitation with therapy needs and mobility aids. In a cohort of caregivers of children with cerebral palsy who completed the Family Needs Survey, caregivers whose children used wheeled mobility reported nearly twice the number of needs (12.1) as caregivers whose children walked without restrictions (6.8).17 Although age was not a factor in number of reported needs on the survey,17 a child's limited motor function increased the odds of having resource or service needs by 30% to 70%.18 Strickland et al19 reported on increased level of severity associated with unmet health care needs in the NS-CSHCN. Dusing et al1 also reported level of severity of limitations as associated with unmet needs for therapy or mobility aids in a prior report.
Caregivers of children with special health care needs whose condition always affected function, compared with those whose condition affected their function very little, were about 4 times more likely to cite that appointment times were not convenient or that the schools lacked the resources needed to meet their children's therapy needs. Caregivers of children with more severe functional limitations experience increased financial, time, and psychological burdens.20–22 Thus, it is plausible that for children with special health care needs with severe conditions, many families may have limited resources to overcome barriers associated with navigating systems of care related to provision of therapy.
The increased likelihood that children aged 3 to 5 years would have unmet therapy needs could be influenced by transition in services from birth to age 3 years to school age. Increased likelihood of unmet therapy needs in younger ages has been reported previously.19 Part B special education program directors and policy makers should critically examine factors related to therapy access in their practice, and physical therapists and program directors who work under Part C should assist families with the transition to preschool-aged services. Continued programmatic and service delivery changes are needed to find solutions that address these unmet needs.
The relationship between lack of insurance and unmet needs has been reported in previous studies on health,19 therapy services,1 and mobility aids.1 Targeted programmatic initiatives may be needed to improve the ability of caregivers who experience difficulties with insurance coverage to meet the needs of their children.23
The association of a number of child and family characteristics with unmet need for therapy or mobility aids in a cross-sectional study does not suggest causality. Although we attempted to control for sociodemographic characteristics that likely influence caregiver report of therapy needs and unmet needs (ie, condition type; frequency that condition affects child's function; child's age, race and ethnicity, and sex; household income; caregiver education; health insurance type and status; and having a usual source of medical care), there may be unobservable child or family characteristics that could have biased our results.
Utilization of actual services and need for rehabilitation services by specific health condition were not investigated. Such investigation would require integration of hospital, school, and center records with patient-reported measures.16 We did not examine differences across states in eligibility for services on reported unmet needs.10,24 Rehabilitation services by specific discipline (eg, physical therapy, occupational therapy, or speech therapy) were not distinguished in the survey, and therefore were not able to be explored in the current study. Future population studies of children with special health care needs should include items specific to each rehabilitation discipline for more detailed information. Evaluations of the effectiveness of various health care delivery models for individuals with developmental disabilities or delays will require linking rehabilitation services and unmet needs to health and functional outcomes, as well as satisfaction with rehabilitation services and mobility aids. Health and functional outcomes and caregiver-reported satisfaction with services were not included in the survey.
Finally, the number of children with special health care needs and with reported unmet needs for mobility aids included in our analyses is small. It is possible that the survey question regarding need for mobility aids may not have adequately captured unmet needs. For example, the question does not specifically ask about proper fitting or repair of mobility aids and devices, or satisfaction with equipment. Future versions of the survey should ask caregivers about these mobility aid–related topics.
In conclusion, we used a nationally representative sample of children with special health care needs. As such, we were able to examine need and unmet need for therapy or mobility aids among a large sample of these children. Of those children with reported therapy or mobility aid needs, nearly 1 in 5 had unmet therapy needs and nearly 1 in 10 had unmet mobility aid needs. Unmet needs were most strongly associated with how frequently the condition affected function and being uninsured in the previous year. Future work should explore health condition–specific and rehabilitation discipline–specific utilization and needs, as well as how needs for rehabilitation services and mobility aids change as individuals enter adulthood. We also propose that questions related to satisfaction with rehabilitation services be added to national databases for children with special health care needs. State differences in unmet needs for therapy services also should be evaluated, given differences in the implementation of changes to the SCHIP under the ACA.
Appendix.
Questions From the 2009–2010 National Survey of Children With Special Health Care Needs (NS-CSHCN) Used to Derive the Study Samples and Classify by Condition Type
Footnotes
All authors provided concept/idea/research design and writing. Dr McManus led and Dr Gannotti assisted with data analysis. Dr Gannotti provided institutional liaisons.
The Institutional Review Board at the University of Colorado deemed this study exempt from human subjects' protection oversight.
- Received February 3, 2015.
- Accepted November 5, 2015.
- © 2016 American Physical Therapy Association
References
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