Parent Centered Planning for Parents with Disabilities: A Qualitative Exploration of a New Intervention Aimed at Improving Supports for Parenting

Background and purpose: People with disabilities historically have experienced extreme forms of discrimination or oppression related to parenting, including forced sterilization. More recently, parents with disabilities have experience high rates of termination of parental rights, despite research showing that parental disability does not necessarily correlate with the likelihood for abuse or neglect. There currently are few formal supports to assist parents with disabilities with their parenting, as the support and service system for adults with disabilities focuses on supporting people with disabilities as individuals, rather than as parents or caregivers. A new intervention has been developed to fill this need, Parent-Centered Planning, modeled after person-centered practices, an evidence-based practice in the disability field. The purpose of this study was to explore the potential of the Parent-Centered Planning intervention for improving supports for parents with disabilities. The specific focus was of this study was a qualitative inquiry into changes parents made during and after participating in the intervention.

Methods: The study sample consisted of 10 parents with intellectual, developmental and/or physical disabilities with at least one child age 18 or younger, who participated in a goal setting intervention aimed at improving supports for parenting. Parents had a range of 1 to 5 children per household, and three-quarters had a co-occurring mental health diagnosis. Qualitative data was collected from interviews with participants and their key support people, as well as document analysis of intake paperwork, materials used during the goal-setting intervention meetings, including a goal-mapping diagram, and progress notes completed by the study social worker. Data was analyzed using thematic analysis.

Results: Common themes emerged in the areas of participants’ beginning quality of supports, their goal directed activities, and quality of supports after participating in the project. Notably, although all participants reported at least a minimal level of social support for parenting, these supportive relationships were often limited in number or helpfulness, and were often very fragile. During and following participation in the intervention, most parents took action towards their identified parental goals, which also resulted in increased connection to social service programs for many families. Moreover, although some participants reduced the number of supportive relationships identified, they reported an increase in satisfaction and quality of the supports that they did have, as they terminated friendships that they deemed unhealthy and stressful, and reported improved communication and support within the relationships that they did have.

Conclusion and implications: This qualitative analysis indicated that participants reported improvements in their supportive relationships for parenting following participation in the Parent-Centered Planning intervention. With few interventions developed that specifically target the support needs of parents with disabilities, results from this intervention can potentially guide practitioners working with parents with disabilities in for increasing and improving the quality of informal supports for parenting. Moreover, the high rate of co-occurring mental health diagnoses highlights an under-met service need, which has implications for practice and policy. Research implications include further testing of the effectiveness and feasibility of the Parent-Centered Planning intervention.