Marji Erickson Warfield

Unmet Need and Problems Accessing Core Health Care Services for Children with Autism Spectrum Disorder

To investigate the health care experiences of children with autism spectrum disorder, whether they have unmet needs, and if so, what types, and problems they encounter accessing needed care. We address these issues by identifying four core health care services and access problems related to provider and system characteristics. Using data from the 2005–2006 National Survey of Children with Special Health Care Needs (NS-CSHCN) we compared children with autism spectrum disorder with children with special health care needs with other emotional, developmental or behavioral problems (excluding autism spectrum disorder) and with other children with special health care needs. We used weighted logistic regression to examine differences in parent reports of unmet needs for the three different health condition groups. Overall unmet need for each service type among CSHCN ranged from 2.5% for routine preventive care to 15% for mental health services. After controlling for predisposing, enabling and need factors, some differences across health condition groups remained. Families of children with autism spectrum disorder were in fact significantly more at risk for having unmet specialty and therapy care needs. Additionally, families of children with autism spectrum disorder were more likely to report provider lack of skills to treat the child as a barrier in obtaining therapy and mental health services. Disparities in unmet needs for children with autism suggest that organizational features of managed care programs and provider characteristics pose barriers to accessing care.

Adaptation during early childhood among mothers of children with disabilities.

This study documents the extent to which child-related and parenting stress vary during the early childhood period among mothers of children with developmental disabilities. The degree to which specific aspects of the family environment predict stress levels measured at age 3 years and 5 years, after controlling for child characteristics and family income, is also investigated. The Parenting Stress Index was completed by 79 mothers of children with developmental disabilities at three time points: (1) within 1 month of the childs entry into an early intervention program (T1); (2) within 1 month of the childs third birthday (T3); and (3) within 1 month of the childs fifth birthday (T5). Data on child characteristics and family income as well as measures of the family environment (i.e., negative life events, cohesion, and family support) were gathered at both T1 and T3. Repeated measures analysis of variance was used to assess whether there was significant change in the child-related and parenting stress scores across the three time points. Two sets of hierarchical regression equations were also analyzed. The first examined which child, family, and family environment characteristics assessed at T1 predicted stress at T3. The second identified the predictors of T5 stress based on independent variables measured at T3. Child-related stress increased significantly across the three time points, whereas parenting stress remained fairly stable. By age 5 years, one-third of the mothers had child-related stress scores above the clinical cutoff point. Regression analyses revealed the importance of the family environment in predicting both stress outcomes. The only statistically significant predictor of child-related stress at T3 was family cohesion, whereas parenting stress at T3 was predicted by income, cohesion, and family support. The predictors of both child-related and parenting stress at T5 were the same. Greater family cohesion and fewer negative life events predicted lower stress scores at T5. The significant increase in child-related stress during the early childhood period warrants attention by pediatricians, educators, and other professionals who must evaluate the needs of families of children with disabilities for supportive services. Aspects of the family environment were shown to be critical and consistent determinants of both child-related and parenting stress throughout the early childhood period. This finding suggests that pediatricians, in particular, must assess more than simply the diagnosis or the cognitive impairment of the child with a disability to make informed decisions about the frequency with which they should see particular families and whether referral to other services is necessary.

Unmet Need and Problems Accessing Specialty Medical and Related Services Among Children with Special Health Care Needs

Objectives: To extend what is known about parent reports of their childs need for specialty medical and related services, unmet need, and specific types of access problems among children with special health care needs (CSHCN). Methods: Using data from a 1998–1999 20-state survey of families of CSHCN, we examined differences in parent report of need for services by child characteristics, investigated parent report of unmet need and access problems by service area and number of services needed, and estimated the likelihood of four access problems and unmet need by child, family, and health insurance characteristics. Results: Overall, the sample children had numerous service needs, although the prevalence of need varied by service type and child characteristics. Reports of unmet need were greater for older children and for children with multiple service needs, unstable health care needs or a behavioral health condition, parents who were in poor health or had more than a high school education, and families whose insurance coverage was inconsistent or lacked a secondary plan. Reports of access problems were greatest for mental health and home health services. The two most prevalent access problems were finding a skilled provider and getting enough visits. Conclusions: The results underscore the importance of finding new ways to link children with behavioral health problems to mental health services, implementing coordinated care and the other core dimensions of the medical home concept, increasing the number of specialty pediatricians and home health providers, and expanding coverage for a wider range of mental health services.

The Brookline Early Education Project: A 25-Year Follow-up Study of a Family-Centered Early Health and Development Intervention

Background. Clinicians, scientists, and policy makers are increasingly taking interest in the long-term outcomes of early intervention programs undertaken during the 1960s and 1970s, which were intended to improve young childrens health and educational prospects. The Brookline Early Education Project (BEEP) was an innovative, community-based program that provided health and developmental services for children and their families from 3 months before birth until entry into kindergarten. It was open to all families in the town of Brookline and to families from neighboring Boston, to include a mixture of families from suburban and urban communities. The goal of the project, which was administered by the Brookline Public Schools, was to ensure that children would enter kindergarten healthy and ready to learn. Objective. Outcome studies of BEEP and comparison children during kindergarten and second grade demonstrated the programs effectiveness during the early school years. The goal of this follow-up study was to test the hypotheses that BEEP participants, in comparison with their peers, would have higher levels of educational attainment, higher incomes, and more positive health behaviors, mental health, and health efficacy during the young adult period. Methods. Participants were young adults who were enrolled in the BEEP project from 1973 to 1978. Comparison subjects were young adults in Boston and Brookline who did not participate in BEEP but were matched to the BEEP group with respect to age, ethnicity, mothers educational level, and neighborhood (during youth). A total of 169 children were enrolled originally in BEEP and monitored through second grade. The follow-up sample included a total of 120 young adults who had participated in BEEP as children. The sample differed from the original BEEP sample in having a slightly larger proportion of college-educated mothers and a slightly smaller proportion of urban families but otherwise resembled the original BEEP sample. The demographic features of the BEEP and comparison samples were similar. The young adults were asked to complete a survey that focused on the major domains of educational/functional outcomes and health/well-being. The study used a quasi-experimental causal-comparative design involving quantitative analyses of differences between the BEEP program and comparison groups, stratified according to community. Hypotheses were tested with analysis of variance and multivariate analysis of variance techniques. Analyses of the hypotheses included the main effects of group (BEEP versus comparison sample) and community (suburban versus urban location), as well as their interaction. Results. Young adults from the suburban community had higher levels of educational attainment than did those in the urban group, with little difference between the suburban BEEP and comparison groups. In the urban group, participation in the BEEP program was associated with completing >1 additional year of schooling. Fewer BEEP young adults reported having a low income (less than

Pediatric provider’s perspectives on the transition to adult health care for youth with autism spectrum disorder: Current strategies and promising new directions

20000); the income differences were accounted for largely by the urban participants. The percentage of subjects with private health insurance was significantly lower in the urban group overall, but the BEEP urban group had higher rates of private insurance than did the comparison group. More than 80% of both suburban samples reported being in very good or excellent health; the 2 urban groups had significantly lower ratings, with 64% of the BEEP group and only 41.67% of the comparison group reaching this standard. Overall, suburban participants reported more positive health behaviors, more perceived competence, and less depression. Among the urban samples, however, participation in BEEP was associated with higher levels of health efficacy, more positive health behaviors, and less depression than their peers. Conclusions. No previous study has focused as extensively on health-related outcomes of early education programs. BEEP participants living in urban communities had advantages over their peers in educational attainment, income, health, and well-being. The educational advantages found for BEEP participants in the early years of schooling included executive skills such as planning, organizing, and completing school-related tasks. It is likely that these early advantages in executive function extended beyond education-related tasks to other activities as participants became responsible for their own lives. The long-term benefits revealed in this study are consistent with the findings of previous long-term studies that indicated that participants in high-quality intervention programs are less likely to cost taxpayers money for health, educational, and public assistance services. The BEEP program appears to have somewhat blunted differences between the urban and suburban groups. The results of this study add to the growing body of findings that indicate that long-term benefits occur as the result of well-designed, intensive, comprehensive early education. The health benefits add a unique and important extension to the findings of other studies.

Physician Perspectives on Providing Primary Medical Care to Adults with Autism Spectrum Disorders (ASD)

Few youth with autism spectrum disorder (ASD) nationally report receiving services to help them transition from the pediatric health care system to the adult health care system. For example, only one-fifth (21.1%) of youth with ASD receive any transition planning services. To better understand why the transition from pediatric to adult health care is so difficult, we interviewed pediatric health care providers with extensive experience serving youth with ASD. We gathered information about the strategies and interventions they use to transition their patients with ASD to an adult provider. Five interventions or strategies are currently being used. These include providing families with written medical summaries to give to adult providers, compiling lists of available adult providers or community resources, coordinating care and communication between individual pediatric and adult providers, making transition-specific appointments, and using checklists to track transition progress. Other interventions or strategies were identified as needed but not currently in practice, and these focused on education and training. For example, informational workshops were suggested to train families and youth about transition. Training adult providers and medical students was also seen as important. Several respondents additionally identified the need for a transition center where all services could be coordinated in one place. With large numbers of youth with ASD becoming young adults, it seems that pediatric practices might want to consider some of the activities described here. Some of these activities, such as family educational seminars and written medical summaries, are likely relatively easy for a practice to implement.

Family well-being in a participant-directed autism waiver program: the role of relational coordination

We conducted in-depth case studies of 10 health care professionals who actively provide primary medical care to adults with autism spectrum disorders. The study sought to understand their experiences in providing this care, the training they had received, the training they lack and their suggestions for encouraging more physicians to provide this care. Qualitative data were gathered by phone using a structured interview guide and analyzed using the framework approach. Challenges to providing care were identified at the systems, practice and provider, and education and training levels. Solutions and interventions targeting needed changes at each level were also proposed. The findings have implications for health care reform, medical school and residency training programs, and the development of best practices.

“In the Driver’s Seat”: Parent Perceptions of Choice in a Participant-Directed Medicaid Waiver Program for Young Children with Autism

BACKGROUND Massachusetts is one of a very limited number of states exclusively employing participant-direction to deliver autism waiver services to children. A crucial element of this waiver program is the work conducted by the states Department of Developmental Services (DDS) staff and state-approved providers with waiver families to facilitate the implementation of the participant-direction model. Our study investigates the effect of the collaboration between state providers and family caregivers on family well-being. METHODS We conducted a survey of 74 families who have been utilising waiver services for at least 6 months. Participants were asked to rate the coordination with providers as well as to report on parenting stress and impact of waiver services on family functioning. Data from in-home child and family assessments conducted by the state were also abstracted from program records. RESULTS After controlling for a host of variables hypothesised to affect the outcomes of interest, we found that the familys view of how well they coordinated with formal providers is significantly associated all of the outcomes. Families who reported greater coordination with state providers experienced lower parenting stress and reported a more positive impact on family functioning. Child externalising behavioural problems and caregivers health rating also contributed to parenting stress and family functioning. CONCLUSIONS Our findings highlight the importance of establishing a collaborative partnership with waiver families in promoting family well-being. These results suggest that training and/or resources that foster team building and communication can positively impact family functioning among families with young children with autism.

The influence of early intervention, informal support and the family environment on trajectories of competence for fathers raising children with developmental disabilities

This study investigated families’ experience of choice within a participant-directed Medicaid waiver program for young children with autism. Fourteen parents or grandparents participated in in-depth interviews about their experience of choosing personnel, directing in-home services, and managing the

Transition tools and access to adult primary care

25,000 annual allocation. Key findings included families’ preference to hire providers with whom they have a prior relationship, parent empowerment and differences of opinion about parents as teachers. Professionals implementing participant directed service models could benefit from understanding the strong value parents’ placed on the personalities and interpersonal skills of providers. Parents’ descriptions of directing rather than merely accepting autism services revealed increased confidence in their ability to choose and manage the multiple components of their children’s HCBS autism waiver program.