Access to Care for Youth with Special Health Care Needs in the Transition to Adulthood

Article Outline

• Abstract
• Methods
  • Subjects
  • Survey procedures
  • Measures
    • Dependent variables
    • Independent variables
  • Statistical analysis
• Results
  • Respondent characteristics
    • Transition: access to medical care and insurance
• Discussion
  • Policy implications
• Acknowledgment
• References
• Copyright

Abstract 

Purpose

To describe access to care and identify factors associated with access for low-income young adults who aged out of a public program for children with special health care needs (CSHCN).

Methods

This was a cross-sectional survey of graduates of the Title V CSHCN program in one California county. Subjects were 77 graduates (55% female) aged 21–24 years with ongoing health care needs. Measures of access to care included having the following: a regular source of care for the main health condition; all needed care since turning 21 years of age; any delayed or forgone care in the past 6 months; health insurance; and continual insurance since turning age 21. Individuals lacking any one access measure were defined as experiencing an adverse transition event.

Results

Of the subjects, 24% lacked a usual source of health care, 27% had gone without some needed health care since turning 21, and 39% had delayed needed care. Although 10% of respondents were uninsured at the time of the survey; 40% had a gap in insurance coverage since turning age 21. Overall, 65% reported at least one adverse transition event affecting access to care. Factors associated with experiencing no adverse transition event were receiving Supplemental Security Income (SSI, p = .007), having received special education services (p = .003), and having been born with the main health condition (p = .013).

Conclusions

Insurance gaps and delayed care are prevalent among these low-income young adults despite ongoing health problems. Greater transition support might improve access by linking them with a usual source of care, identifying insurance options, and encouraging regular use of care.

Keywords: Children with special health care needs, Young adults, Access to care, Transition to adulthood

The medical system for children with serious health conditions (e.g. congenital heart disease, cystic fibrosis) is shaped by a long history of federal policy and programs promoting access to comprehensive care for all children. Medicaid and the State Children's Health Insurance Program (SCHIP) ensure most young persons aged 18 years or younger in low-income households access to a broad range of medical and supportive services [1], [2], [3]. Since 1935, the federal Title V program has facilitated medical access for children with chronic or disabling physical conditions through direct payment of services and financial support of systems of care for children, for example, through special diagnosis–based care centers [4], [5]. Medical eligibility and models of care within Title V have evolved over time in response to changing treatment options [6], [7]. Given the dramatic improvement in survival rates, greater attention is being given to health outcomes for adult survivors of serious pediatric conditions [8], [9]. A major concern is that transferring vulnerable children into the episodic adult system of health care could jeopardize access to care and worsen health [10], [11].

The limited data available suggest gaps in access to care for young adults with chronic childhood conditions. Many young adults lose access to health insurance and supportive services at age 18 years (or, in some states, at age 21 years) [12], [13]. A study that followed a cohort of adolescents with congenital heart disease into young adulthood found that half of them failed to follow up with recommended cardiac care [14]. In qualitative studies, youth and their families report being unprepared for transitioning and having difficulty finding adult-oriented providers who can meet their care needs [15], [16].

In light of this vulnerability to interruption in care, a number of professional societies, including the American Academy of Pediatrics, the American College of Physicians, and the American Academy of Family Practice, have issued recommendations for transitioning Youth with Special Health Care Needs (YSCHN) into the adult system [17], [18]. We reviewed the research literature and professional guidelines, and then identified recommended transition preparation activities and desired health care-related outcomes for YSHCN as they become young adults [17], [18], [19], [20], [21], [22], [23]. We categorized these outcomes into four domains: (1) ongoing access to age- and disease-appropriate health care providers; (2) access to uninterrupted, affordable health insurance; (3) development of disease self-management skills; and (4) access to age-appropriate educational and vocational opportunities to allow economic self-sufficiency.

This study provides information about the first two of these domains by examining the transition to adulthood for youth who have aged out of a publicly funded program for children with special health care needs.

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Methods 

Subjects 

Study subjects were drawn from a sample of young adults 21–24 years of age who aged out of the federally and state funded Title V program for children with special health care needs in San Bernardino County, California. In addition to providing some direct care, California county Title V agencies (called California Children's Services agencies) provide payment for comprehensive medical services and care coordination for low-income children from birth through age 21 who have potentially life threatening or disabling illnesses (based on a list of eligible diagnoses) [24]. Financial eligibility includes family income of less than $40,000 per year or medical expenses exceeding 20% of annual income. Our study was conducted in San Bernardino County, which includes both urban and rural areas and is California's largest county, located approximately 35 miles east of Los Angeles and extending to the Arizona and Nevada border. This area has 1.76 million residents, and the Title V program in San Bernardino County annually serves approximately 10,000 children from birth to age 21 years. The racial/ethnic demographics of the county are similar to the rest of California, about 10% black and 45% Hispanic, and the average household income of $43,185 is about $5000 below the state average [25].

Our sampling frame included all individuals graduating from the Title V agency between January 2001 and December 2003. Using information from administrative data, we excluded children living in institutions because of cognitive impairments or severe disabling conditions and children living in foster care at the time of graduation from Title V. We also excluded individuals who were deemed medically ineligible for the Title V program before their 21st birthday, those who were unable to respond to telephone survey questions in English, and those who lacked the cognitive ability to give informed consent and to respond to survey questions (Figure 1).

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• Figure 1. 

  Sample for the Title V Transition Survey.

Survey procedures 

Administrators at the Title V program sent an invitation letter to 420 program graduates who met inclusion criteria for the study. Between July 2004 and April 2005, the research team attempted to contact the entire sample of 420 graduates; phone numbers for 190 individuals in the sample were either incorrect or disconnected. In addition 84 individuals were excluded when the initial contact revealed a language barrier (n = 11), cognitive impairment (n = 60), or death since program graduation (n = 13). The resulting final sample comprised 146 individuals. Of these, 91 (62%) completed a 60-minute telephone survey.

This study was limited to the 77 of the 91 survey respondents who reported that they needed ongoing treatment for symptoms or follow-up for the medical condition that had originally made them eligible for Title V.

All interviews were conducted directly with the program graduates. The interviewers received standardized training in survey methods and in administration of this survey from the principal investigator and from the UCLA Survey Research Group. The study protocol was approved by the UCLA and Arrowhead Regional Medical Center (San Bernardino County) institutional review boards (UCLA IRB #G0401022, Arrowhead IRB #04-08). All subjects gave verbal informed consent to participate in the study.

Measures 

We measured five transition events within the two transition framework domains of access to health care providers and insurance coverage, which we studied: (1) currently having a regular source of care for the survey respondent's main health condition; (2) receiving all needed care since turning 21 years of age; (3) receiving all needed health care without delay in the past 6 months; (4) currently having any type of health insurance; and (5) having health insurance at all times since leaving the Title V program. Individuals lacking any of these measures of care or insurance were defined as experiencing an adverse transition event. We examined each measure separately and also created a composite measure of having one or more adverse transition event. Descriptive characteristics of several transition events were also collected. We asked respondents about features of their current health care and insurance. Those with a usual source of care reported whether they had changed from their childhood provider and also whether their current provider was trained in pediatric or adult medicine or both. Subjects with insurance reported the type (Medicaid, Medicare, private, other). Individuals who had experienced a gap in insurance reported the duration of time for which they were uninsured.

We measured characteristics of the subjects present at the time they graduated from the Title V program as well as current characteristics known to be associated with access to care. Self-reported sociodemographic factors included, age, gender, race/ethnicity (non-Hispanic white, non-Hispanic black, Hispanic, and non-Hispanic other), and educational attainment of the respondent (completion vs. noncompletion of high school). Respondents were asked to identify the health condition(s) that had made them eligible for the Title V program. These conditions were categorized into one of 14 categories by organ system, based on the California Title V eligibility criteria [24], which was identified in each case as the respondent's main health condition. Respondents were asked if their main condition was present since birth. Respondents reported whether they had ever had a mental health problem (yes or no) and rated their current health status (excellent, very good, good, fair, or poor). We asked respondents whether they received specific social support services, including Supplemental Security Income (SSI) benefits, and whether they had received special education services in high school.

Statistical analysis 

We calculated descriptive statistics for the five transition measures and the measure of experiencing any adverse transition event. We provide bivariate statistics for associations between the independent variables and the composite measure of experiencing any adverse transition event. Because of the small cell sizes, we used Fisher's exact test of significance to assess associations between independent variables and the dependent transition measure, using a significance level of p < .05.

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Results 

Respondent characteristics 

Subjects were 21–24 years of age (Table 1). Among them, 94% had graduated from the Title V program at least 12 months before the interview. Types of medical conditions included neoplasm (10%), neurological (23%), musculoskeletal (17%), endocrine (mainly diabetes) (13%), and renal or urologic (9%). We reviewed CCS administrative files to confirm diagnoses for 31 subjects who provided written consent for us to do so; of these, none of the reported diagnoses were discordant. A total of 14% reported their main health condition as trauma-related, and 29% reported having had their main condition since birth. The majority of respondents had more than one health condition (78%). A total of 24% rated their current health as fair or poor.

Table 1. Characteristics of the study subjects (N = 77)

Characteristic	n	(%)
Age (y)
21	5	6
22	22	29
23	26	34
24	24	31
Mean (range)⁎	22.9	(21.9–24.9)
Female gender	42	55
Race/ethnicity
White	29	38
Black	10	13
Hispanic	28	36
Other	10	13
Ever received special education	26	34
Completed high school	65	84
Born with condition	22	29
More than one health condition	60	78
Had Medicaid before age 21 years	44	57
Current characteristics
Receives SSI	39	51
Has mental health problem	16	21
Health status
Excellent/very good	26	37
Good	28	39
Fair/Poor	17	24

SSI = Supplemental Security Income.

In all, 24% of the respondents reported lacking a usual source of care for their main condition (Table 2). Approximately 27% had gone without some needed medical care since turning age 21 years, and 39% had delayed or forgone care in the last 6 months. Few respondents (10%) were uninsured at the time of the survey; substantially more (40%) reported having a time without insurance coverage since turning age 21. Approximately two-thirds of the respondents (65%) experienced at least one adverse transition event after transitioning out of the Title V program.

Table 2. Rates of adverse transition events and descriptive characteristics of care and insurance

	n	(%)
Adverse transition event
No usual source of care⁎	18	24
Foregone needed medical care since turning age 21⁎⁎	20	27
Any delayed care in last 6 months⁎⁎⁎	28	39
Currently uninsured⁎⁎⁎⁎	7	10
Any gap in insurance since turning age 21⁎⁎⁎⁎⁎	29	40
Any adverse transition event	46	65
Change in usual provider since graduation from Title V
No usual provider	18	24
Same	24	32
New	33	44
Training of usual provider (if respondent has a usual provider)
Pediatric	13	23
Adult	30	54
Both	13	23
Type of current insurance (if any)
Medicaid	33	52
Medicare	2	3
Employer-based	15	23
Private purchased	3	5
Other	11	17
Duration of gap in insurance (if any gap)
≤3 Months	7	24
4–11 Months	6	21
≥1 Year	16	55
Continuous Medicaid since age 21	20	28

Further descriptions of these transition events are shown in Table 2. Of the respondents, 32% currently received care from the same provider they had before graduation from the Title V program, and 23% reported receiving care for their main condition from a pediatric provider. Of those who did not change providers, about half saw pediatricians, whereas the other half were seeing clinicians who treated both children and adults or who treated only adults (data not shown). Of the 64 individuals who were currently insured, 33 (52%) had Medicaid, and 15 (23%) had only employer-based insurance. About half (55%) of those who had experienced a gap in insurance had spent at least 1 year without insurance.

Respondents who had received special education services were less likely to experience one or more adverse transition event (42% vs. 78%, p = .003), as shown in Table 3. Those with a congenital condition were less likely than those with an acquired condition or injury to have experienced one or more adverse transition event (43% vs. 76%; p = .013). Respondents currently receiving SSI were also less likely to have experienced an adverse transition event (51% vs. 82%, p = .007). Because SSI eligibility confers Medicaid insurance coverage in California, we also examined the association of receiving SSI with a modified composite measure of the three medical access transition events (excluding the two insurance related-variables). The difference in experiencing any access-related adverse transition event between respondents receiving SSI (43%) and those not receiving SSI (64%) (p = .1) did not reach the threshold for statistical significance established for this study (data not shown). In a separate analysis we found that more respondents with current insurance than those lacking insurance had a usual source of care (81% vs. 29%, p = .007).

Table 3. Association between individual characteristics and having had one or more adverse transition event

Characteristics	One or more adverse transition event		p Value
	n	%
Gender
Female	24	59
Male	24	75	.21
Race/ethnicity
White	19	68
Black	6	60
Hispanic	18	64
Other	7	78	.89
Ever received special education
Yes	10	42
No	39	78	.003
Completed high school
Yes	42	67
No	8	67	1.00
Born with main condition
Yes	9	43
No	41	76	.013
More than one serious condition
Yes	12	75
No	38	64	.56
Ever had mental health problem
Yes	11	73
No	39	65	.76
Current health status
Excellent/very good	17	65
Good	15	54
Fair/poor	14	82	.16
Currently receives SSI
Yes	19	51
No	31	82	.007

SSI = Supplemental Security Income.

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Discussion 

For children with serious medical conditions, the transition to adult care includes both the need to find insurance and the need to find a regular source of care. In this population-based study examining the transition in access to care, two-thirds of young adults from a California county Title V program experienced at least one of five adverse transition events: (1) lacking a usual source of care, (2) having an unmet need for health care, (3) having any delayed or forgone care in the last 6 months, (4) lacking insurance coverage, or (5) having a gap in insurance coverage.

Rates of unmet need and access problems are relatively high in this group, compared with those in younger populations of CSHCN, and rates of insurance coverage clearly decline after graduation. Although we do not know about perceived gaps in insurance coverage in this population before they turn 21 years of age, as a result of the Title V program, all had coverage to pay for needed specialty care, whereas 10% the sample lacked any type of coverage as young adults. In a representative survey of youth aged 18–21 years in the Los Angeles County Title V program surveyed in 2005 [26], 100% had a usual source of care for their main condition, vs. 76% of the former Title V enrollees surveyed here (original tabulation by authors). Furthermore 13% of those aged 18–21 years in Los Angeles County Title V had delayed or forgone care in the last 12 months, vs. 39% in our study [26]. Although our study population does have better access to care than the general population of young adults, with uninsurance rates of approximately 22% for the general population of individuals 21–24 years of age [27], our results show that our respondents' current level of access is not sufficient to meet their increased needs.

Experiencing an insurance gap was the most prevalent access problem. Although 10% were uninsured at the time of the survey, 41% had experienced an interruption in coverage at least once since turning age 21. Despite high on-going medical need, and the fact that almost 60% of respondents had Medicaid while enrolled in the Title V program, only 28% (n = 20) were continuously covered by Medicaid throughout the first few years after graduation from Title V. We cannot tell from our data whether people lost eligibility for Medicaid or failed to re-enroll when they were eligible. Of the respondents with continuous Medicaid coverage since graduation, 55% (n = 11) had no adverse transition events, compared with 27% (n = 14) of those without continuous Medicaid (p = .051, data not shown). This is an important policy concern because having health insurance is an important predictor of having a usual source of care. Although insurance coverage was not associated with our measure of delayed or missed care in this study (data not shown), Callahan and Cooper showed that among young adults reporting disabling conditions in a national cross-sectional survey, those without insurance were more likely to have unmet health care needs than those with insurance [28]. Other studies have also shown that discontinuity of health insurance is associated with poor access to care [29].

At the same time, our findings suggest that maintaining health insurance coverage is not sufficient to ensure access to needed health care. Two-thirds (12 of 18) of those lacking a usual source of care had insurance coverage. More than one-third (38%) of respondents with health insurance had delayed or forgone care in the previous 6 months (data not shown). Because having a usual source of care is another potential mechanism for ensuring adequate treatment and ongoing follow-up care, linking young adults with a usual source may be an important lever for improving access. Possible reasons for not having a usual source of care (despite having insurance coverage) include an inability to find an informed and responsive health care provider, or one who accept the young adult's insurance [15], [30].

In our study, young adults with SSI were less likely to experience adverse transition events. It is possible that these individuals had SSI benefits from adolescence into young adulthood and therefore experienced no insurance gaps, given the automatic Medicaid coverage for SSI recipients in California [31]. Those receiving SSI may have other reasons, such as health status, for having improved transition events. Unfortunately our sample size limits our ability to perform multivariate analysis to resolve this concern.

Involvement in special education before the transition to young adulthood was also associated with a lower likelihood of negative transition events. It is possible that the transition services mandated by the Individuals with Disabilities Act at age 14 years [32] could be helping youth to make better educational and vocational plans for the future, resulting in better health care access. The association of SSI and special education with transition events needs further study to identify specific beneficial activities or policies that might be extended to the broader population of Youth with Special Health Care Needs transitioning to adulthood.

Our study has implications for Title V programs as well as pediatric and adult providers caring for special-needs populations during adolescence and young adulthood. In the 2001 National Survey of Children with Special Health Care Needs, 49% of adolescents aged 13–17 years (50% of those aged 16–17 years) had discussed with their health care provider the need for transferring to adult care, and less than one-third had made specific plans [33]. The federal Maternal and Child Health Bureau has established transition as a priority improvement area for state Title V programs, and has encouraged its state grantees to provide more transition services [8], [34], [35]. San Bernardino County Title V agency recently began a policy of sending a letter to all program enrollees on their 20th birthdays to alert them to the up-coming end of their eligibility, and encouraging contact with the agency to assist with planning. The new policy was implemented after some of our study subjects had already left the program, and we were not able to evaluate its effect. More proactive care coordination around the time of program graduation might be needed to improve access to care after transition for this population.

It is notable that nearly one-third of subjects were still receiving care from the same provider that they saw before turning age 21. This finding is consistent with the progressive nature of adolescent development, and from a service perspective suggests that youth will need assistance with the transition to adulthood over an extended period of time. Because some transitions occur at an older age, a program from birth to age 21 may not be able to shepherd all adolescents fully into an adult system of care. This creates a central role for both pediatric and adult providers caring for young adults beyond their 21st birthdays.

This study has several limitations. It reflects the experience of youth in one county, and California's Title V medical eligibility differs from other states. However the county population is large, and the state accounts for about 12% of the US population. Resource limitations permitted our research team to administer the survey only in English. We were not able to assess demographic or health related information for former Title V enrollees that we were unable to contact. We expect that the subjects that we did contact have more stable households compared with the former Title V enrollees whom we could not reach because of outdated address and phone information. Household stability may be associated with improved continuity of health care, so our findings could be biased toward fewer adverse transition events than would be seen for the overall population of former Title V enrollees. Although by definition all of the respondents had access to insurance before turning age 21 (through the Title V program) and had access to health care providers for their main condition, we were unable to compare current perceptions of unmet needs with experiences before leaving the Title V program. Our survey did not include information about program graduates with developmental delay, an important subpopulation of youth with special health care needs. In addition, the respondents in this survey were by design still relatively young (mean age, 23 years). Future studies will need to follow these young adults longer to describe care patterns over time. Finally, reliance on self-report of medical condition and health needs could lead to inaccurate estimates of needed health care.

Policy implications 

Our findings of Medicaid insurance loss for young adults aging out of Title V programs show the need for assistance in understanding and promoting Medicaid enrollment for young adults. In addition, increasing access to Medicaid to those with significant health needs who do not meet federal and state disability criteria would give this entire population the health care benefits now associated only with those deemed eligible for SSI [36]. Our findings also suggest that expanding access to health insurance is a necessary but is not a sufficient to ensure continuous access to health care. The majority of young adults in our study had health insurance, yet they also had high rates of unmet need as well as interruptions in health care.

Larger studies that follow cohorts of individuals are needed to examine the predictors of transition events identified in this study (e.g., insurance status, receipt of special education services and SSI). It is critical to then understand how these young adults fare in the adult care system to elucidate how these transition events affect health care outcomes such as hospitalizations and long term morbidity. Beyond building a quality health care system for children and adolescents with special health care needs, we must ensure that these individuals receive the care they need when they reach adulthood.

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Acknowledgment 

The authors gratefully acknowledge the support of Laura McLaughlin, M.S.W., and Ken Adams, M.P.H., from the San Bernardino County California Children's Services program, and Eve Fielder, Ph.D., and Tonya Hays from the UCLA Survey Research Group. Marika Suttorp assisted with statistical analyses. The authors are also grateful for the early guidance and encouragement of Marlene Nishimoto-Horowitz (1957–2005).

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