Strengthening Community Participation by People With Disabilities in Community-Based Group Homes Through Innovative Action Research.

In the US and beyond, a paradigm shift is underway toward community-based care, motivated by changes in policies, payment models and social norms. A significant aspect of this shift for disability activists and policy makers is ensuring participation in community life for individuals with disabilities living in residential homes. Despite a U.S. government ruling that encourages community participation and provides federal and state funding to realize it, little progress has been made. This study builds on and integrates the expanded model of value creation with relational coordination theory by investigating how the resources and relationships between care providers, adults with disabilities, family members, and community members can be leveraged to create value for residents through meaningful community participation. The purpose of our community case study was to assess and improve the quality of relationships between stakeholder groups, including direct care staff and managers, residents, family members, and the community through an action research intervention. This study took place in a residential group home in a Northeastern US community serving adults with disabilities from acquired brain injury. A pre-test post-test design was used and quantitative assessments of relational coordination were collected through electronic surveys, administered at baseline, and post-intervention. Direct care staff, supervisors, the house manager, and nursing staff completed the survey. Qualitative data were collected through focus groups, change team meetings, and key informant interviews. Direct care staff formed a change team to reflect on their baseline relational coordination data and identified the weak ties between direct care staff, family members, and the community as an area of concern. Staff chose to hold a community-wide open house to provide an opportunity to foster greater understanding among staff, residents, family, and community members. The change team and other staff members coordinated with local schools, business owners, town officials, churches, and neighbors. The event was attended by 50 people, about two-thirds from the community. Following the intervention, there was an increase in staff relational coordination with the community. While statistical significance could not be assessed, the change in staff RC with the community was considered qualitatively significant in that real connections were made with members of the community both directly and afterwards. Despite a small sample size, a residential setting where management was favorable to initiating staff-led interventions, and no comparison or control group, our small pilot study provides tentative evidence that engaging direct care staff in efforts to improve relational coordination with community members may succeed in building relationships that are essential to realizing the goal of greater participation in community life.

Parenting a 6-Year Old Is Not What I Planned in Retirement: Trauma and Stress among Grandparents Due to the Opioid Crisis.

There is little research about trauma, financial stress, and social service needs emanating from the experience of parenting grandchildren caused by the opioid crisis in the United States. We conducted a qualitative study with 15 grandparents who currently or in the past had custodial care of their grandchildren. We also interviewed nine issue-related stakeholders in Eastern Massachusetts. Specific inquiries centered on events leading up to a change in guardianship, stressors related to legal, financial, and family issues, and system-wide response to the grandparents' needs. Results indicate that the opioid crisis presents distinct challenges for the grandparent-led families and for the systems that serve the new family arrangement. Crisis triggers a change in guardianship and continues throughout the years. The continued crises stem from events related to the parent's opioid use disorder (OUD) and from expenses related to raising a young family, especially when the grandchild has adverse childhood experiences. Our analysis shows that systems break down on a number of levels, and the fluidity of custodial arrangements due to parents' OUD status does not map onto existing support or benefit systems. Policy responses must focus on the immediate and long-term needs of grandparent caretakers, especially since the opioid crisis is likely to continue.

Health care utilization among children with chronic conditions in military families.

BACKGROUND: Studies have examined utilization of health care services by civilian children with chronic conditions but not utilization among child dependents of military personnel. OBJECTIVE: To identify children with chronic conditions among military members and retirees and examine their health care utilization and its association with type of condition. METHODS: We derived our sample from child dependents ages birth to 18 years of military personnel with health care enrollment in FY2011. We defined chronic conditions based on diagnoses and repeated specialty care visits. We accrued one year of health care utilization for each child starting with the date of first diagnosis that qualified (i.e., 2 + visits). Health care utilization measures were any inpatient stay; number of outpatient visits (excluding emergency department [ED] visits), ED visits, and number of psychotropic and non-psychotropic prescriptions. RESULTS: Conditions with the highest prevalence were ADHD/conduct disorders (41.2%), other behavioral health (BH) disorders (30.4%), asthma (25.3%) and arthritis (23.8%). Boys and children ages 6-18 were more likely to have BH conditions. Twelve percent had inpatient stays, 63% used the ED, and mean ED visits was 4.6. The mean outpatient visits was 27.9. Utilization was consistently higher for children with both BH and physical health (PH) conditions, children under age 5 (except for number of psychotropic prescriptions), and those enrolled in the military's Extended Health Care Options (ECHO) program. CONCLUSIONS: Prevalence and utilization findings provide data for future service planning and highlight subgroups of children with chronic conditions who may need better access to supportive military programs.

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

BACKGROUND: Scant research disentangles the relationship between parenting competence, early intervention (EI) services, the family environment and informal support among fathers of children with developmental disabilities. AIMS: (1) To determine the trajectory of parental competence for fathers of children with DD from age 3 to age 15. (2) Controlling for child and family characteristics, determine the main effects of the family environment, informal support, and EI services on paternal competence when their child with a developmental disability was age 3. (3) To determine whether there were lasting effects of the family environment, informal support, and the EI service system on differences in paternal competence over time. METHODS: This study used multilevel modeling to analyze longitudinal data from 93 American fathers from the Early Intervention Collaborative Study. RESULTS: There was no significant change over time in paternal competence after controlling for various covariates. Fathers who initially reported low levels of competence when their child was three reported continuously lower competence over time. Family relationships, positive supports, and perceived helpfulness of home visits were significant predictors of paternal competence at age three. CONCLUSION: Implications for programs and policy include developing and adopting rigorous ways to measure and carefully monitor service provision, including assessments of paternal competence, family relationships and informal supports at the start of early intervention, and fostering continuous collaborations between providers, researchers and clinicians to address challenges in data collection.

Associations Between Early Intervention Home Visits, Family Relationships and Competence for Mothers of Children with Developmental Disabilities.

Objectives To examine the association between intensity of home visits in early intervention (EI), perceived helpfulness of home visits in EI, and positive family relationships as predictors of maternal competence at age 3, as well as moderating effects of predictors, controlling for child characteristics, family demographics, and negative life events. Methods Data were drawn from the Early Intervention Collaborative Study (EICS), a 24-year longitudinal investigation of approximately 190 families of children with developmental disabilities who participated in EI programs in Massachusetts and New Hampshire. The primary analytic strategy was multivariable regression modeling. Each independent predictor was tested individually and then all together to build the final model. Interactions between independent predictors were also examined. Results After controlling for child and family characteristics and negative life events, the intensity of home visits was not significantly associated with maternal competence at age 3. However, the helpfulness of home visits (ß = 2.94, S.E. = 1.12, p < .01) and positive family relationships (ß = 5.11, S.E. = 1.08, p < .001) were associated with higher maternal competence when the child was 3 years old. Conclusions for Practice Recommendations for programs and policy include collecting life course data on families, particularly on their family relationships and experiences in EI and home visiting, assessing family relationships at the beginning of EI using a strengths-based perspective, and closely monitoring the quality of services.

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

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.

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 $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.

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.

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 child's 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 children's 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 program's 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, mother's 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 20000 dollars); 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.