Perkins School for the Blind Transition Center

Parent Involvement as a Metric of Quality Care

A family-centered approach has been considered best practice for many years in early intervention and pediatric rehabilitation (Bailey, Buysse, Edmondson, 1992; Baird & Peterson, 1997). For students with complex medical, physical, developmental, and behavioral challenges, a family-centered approach is critical. According to King, Teplicky, King and Rosenbaum (2004), three basic premises are components of this framework: (1) parents know their children best and want the best for their children (2) families are unique and different, and (3) optimal child functioning occurs within a supportive family and community context. These guiding principles provide the foundation for including parents in decision making and creating partnerships with our families at First Children Services. Emphasis on the identification of needs as well as the strengths of our families is our focus. Opportunities for parents to connect occur in many ways at First Children. Parents are welcome to observe or participate in all therapy sessions at the school. Parent connections are critical for support and home carryover, as home-school collaboration is one of the indicators of program quality for students with severe disabilities.

Happy young family sitting on couch and talking with family counselor

Parent involvement is essential to effective care because parents best understand if behavior interventions are effective in their child’s natural environment, and where skill gaps may continue to persist. If an intervention is not suited to a client’s unique circumstances, it will not be an effective intervention. Additionally, families that are a supportive and collaborative part of the treatment team will be more motivated to ensure treatment fidelity and will provide the most constructive feedback about which parts of the intervention are working and which ones need to be revised.

Clinicians often come into the lives of clients and their families at vulnerable times. Typically, families are dealing with a major transition and seek services for the first time following a diagnosis or transitioning from services that no longer suited their needs. From initial contact to ongoing service delivery to titration of services, it is critical for families to feel secure in trusting the care of their loved ones to their clinical team. Clinicians at all levels should present themselves as non-judgmental, relatable sources of support and education. Families should feel at ease around clinicians and feel confident they are there to be compassionate and helpful. This feeling of security and trust is critical to ensuring honest communication and collaboration across all settings. When clients are preparing to transition out of services because they no longer require the same level of care, their families are the bridge to independence. A strong foundation of collaboration and trust is what will ultimately provide a family with the ability to graduate from services and live a life with improved outcomes and independence.

First Children Services Family Highlight

The Transitions program at First Children offers small group instruction to support students with varying degrees of school refusal, social anxiety, and other mental health issues from attending school regularly. Several years ago, our team came together to look at the needs of one of our more complex students. The student presented with significant levels of school refusal, avoidance, disruptive behaviors, Autism, trauma, and mood dysregulation. The team realized that we would need to take a comprehensive integrated approach to the course of treatment. The staff worked with the family to integrate the support of a BCBA, behavior tech and licensed clinical social worker to support the course of treatment. The goal from the beginning was identifying how the team could best support him and foster his success within the program. The family was more than receptive to this as they only wanted the best outcome for their son.

Over the next several months a team of educators, mental health professionals, BCBAs and behavior technicians were involved in coordinated planning and intervention. This required regular, frequent meetings to provide clinical updates, home visits, observations, and counseling sessions. While the results were not instantaneous, we saw progress happen. The student achieved the goals he set for himself. He mastered the goals the multidisciplinary team set for him as well! He was able to identify healthy coping strategies, identify when he needed a break, and sought counseling supports. Over time he became one of our higher performing students, even supporting new students who entered the program. And in the end, he thrived and was able to successfully return to the public school with minimal accommodations.

None of this would have been accomplished without consistent, regular, and compassionate team planning, for both the organization and the family. Our comprehensive and collaborative process helped the student and the family succeed. Achieving this level of success starts from the beginning. There is not a “one size fits all” approach and to appropriately support our students is a group effort.

In closing, it is our philosophy at First Children that FAMILY is critical to the effective treatment of kids with challenging needs. This takes two forms – involving parents and family members in all aspects of the care and treatment of their children; and extending support and service to parents and family members who struggle with the unique challenges of having kids with special needs. When a family entrusts First Children with the care of their children, they get a long-term partner willing to go above and beyond for the whole family.

The future of services for children and families is constantly evolving. While there are arguably more resources provided to children and families today than at any time before, there are also challenges. For one, it is critical that policy makers, payers and providers focus resources on the real needs of kids and families, not some predesigned model of care in which one size fits all. In this it is crucial that resources are allocated to serve the unique needs of family members of children and support them in being integral members of the treatment team. Similarly, it is immensely important that organizations like First Children remain financially limber to be able to pivot their services to address the changing and increasingly complex needs of children and their families. To do this, they need to be smart financial stewards and be open to opportunities to work with others who can help support the mission with operational, clinical, and financial expertise and resources.

Erica Ballard, MA, BCBA, is Behavior Analyst, Caitlin Summers, MA, LPC, ACS, is Director of Mental Health Services, Ellen D’Amanto, PhD, is School Psychologist, Joe Hess is President, Howard Savin is Clinical Advisor, and Kristen Daneker, MS, BCBA, is Director of Quality & Outcomes at First Children Services.


Bailey, D.B., Buysse, V., Edmondson, R. et al (1992). Creating family-centered services in early intervention: Perception of professionals in four states. Exceptional Children, 58, 298-309.

Baird, S. & Peterson, J. (1997). Seeking a comfortable fit between family-centered philosophy and infant-parent interaction in early intervention: Time for a paradigm shift. Topics in Early Childhood special Education (17), 139-164.

King, S., Teplicky, R., King, G. & Rosenbaum, P. (2004). Family-centered service for children with cerebral palsy and their families: A review of literature. Seminars in Pediatric Neurology, 11 (1), 78-86.

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