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Model Aims to Help Families Caring for Children With Disabilities

Across the country, mental health agencies are embracing the concept of family-driven care, which posits that families have a primary decision-making role in their children’s care and are actively engaged in the design of policies that promote quality care for all children.

University of Kansas (KU) researchers have contracted with the Kansas Department of Aging and Disability Services to expand and test the effectiveness of a specific component of that concept to help families caring for children with intellectual or developmental disabilities.

Researchers in the School of Social Welfare developed a model of family-driven practice, parent support training (PST) best practices protocol, which has been shown to improve home stability of youth with significant mental health needs. A unique feature of the PST practice is that it fosters peer support, allowing parents to help parents and empower them to better care for themselves and their children with unique needs.

Family support services like PST have grown in popularity across the country since the mid-1990s when family advocates in children’s mental health became vocal about the vital role families play in their children’s well-being. Despite rapid growth of family support services, limited research and training curricula exist to show effectiveness or train the rapidly growing family support workforce. KU’s social welfare team has been able to define a specific model of the Kansas family support practice PST, evaluate effectiveness, and develop training for PST providers.

“Nationally, family-driven care is something that federal agencies such as the Substance Abuse Mental Health Services Administration have an interest in because family-support practices have the potential to improve families’ understanding and utilization of existing services. This kind of engagement in services improves access and quality of existing social services,” says Sharah Davis, project manager of KU’s parent support services and training team. “Some states, like Kansas, have funding in the public mental health system to implement family support services. As far as we can tell, no one has a clearly defined model that can be implemented statewide, or training, and a way to evaluate effective implementation.”

The team has developed tools to implement the training and partnered with the state of Kansas and KU’s Center for Online & Design Learning to develop a blended online methodology for PST providers. The training first introduces concepts online, and provides an orientation and assessment of the providers’ comprehension. Researchers then design individualized training to practice the concepts and tools that weren’t well understood from the online component. The providers can attend an interactive live training or webinar where areas of needed attention are further explained and practiced.

The online learning modules help providers understand the family-driven paradigm, the code of ethics, and how to carry out the 34 PST best practices to achieve outcomes such as reduced caregiver strain, increased family empowerment, improved parenting techniques, and enhanced social supports. In addition, the team of trainers provides posttraining technical assistance and mentoring to assure the PST providers are achieving intended outcomes.

Helping families is especially important to the KU team as several of those who help develop best practices and test the delivery have children or other family members with developmental disabilities.
“We meet them, help them identify resources, and talk about the unique parenting challenges of having children with developmental disabilities,” says April Patton, a PST provider and educational program coordinator at KU. “People are more open to others who’ve been through their same experiences.”

In order to test the effectiveness of the PST model for families who care for a person with an intellectual or developmental disability, a random sample of families were selected from a statewide waitlist. The KU team will conduct pre- and postintervention evaluations to determine how well the PST best practices worked to mobilize resources and identify individualized strategies to improve family outcomes. The primary tool used to achieve that is an 18-question needs assessment.

The PST providers “become a walking tool kit with the purpose of connecting families to the services, information, and resources that can best fit their needs,” says Tiffany Koloroutis-Kann, a research assistant with the project. “The idea is to empower families to do it for themselves. Our goal is to be tech support providers and make sure the training and existing services are accessible and working to help people as much as possible.”

For example, Kansas has a good deal of resources to support families or caregivers of individuals with intellectual or developmental disabilities. Families often don’t know about these advocacy agencies or how to access services. The system is complex and can be confusing. In addition, some families may be better served in the mental health system but are waiting for services in the developmental disability system. PST providers can help families navigate by educating and coaching them on how to ask for, and get, the help they need. All PST interventions are individualized based on the needs assessment, level of empowerment, strain, and social support families have when they’re coming into PST services.

“It opens a lot of doors continually, not just during one training session,” Patton says.

Early results are promising, the team reports. Should the best practices model continue to show efficacy, it could set a precedent for a way to support key quality improvement features of the Affordable Care Act, such as effective patient engagement and quality care coordination.

“The more we learn about PST services the more apparent it becomes that the model can be applied to any family facing adversity,” Patton adds. “The service gives hope to families—through a voice of someone who’s been through it.”