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.

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.

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.

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.

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.

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

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.

"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.

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.

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.

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.