Leadership Education in Neurodevelopmental and related Disabilities (LEND) Program

Division of Developmental and Behavioral Pediatrics

Cincinnati Children's Hospital Medical Center
University of Cincinnati University Center for Excellence in Developmental Disabilities
You Project Abstract

Disabled Parenting Project: Training Case Managers to Support Parents with Disabilities

Caitlin Couch, BSN, Kendall Ramsay, HBS, Susan Koller, MPA, Kara Ayers, PhD, & Ilka Riddle, PhD

Background:All parents need varying kinds and levels of support at different times in their child’s life. For
the more than 4.1 million parents with disabilities, it can be more difficult to find this support. A
community partner, Hamilton County Developmental Disability Services (HCDDS), identified a specific
need for case managers to learn how to educate and support parents with disabilities. Prior research
indicates a need for responsive, family-centered, ongoing, and sometimes long-term supports with a
focus on community integration. There is a gap between the needs of parents with disabilities and
currently available training for case managers.

Objective:To develop and disseminate an evidenced-based curriculum for disability services case
managers to better support parents with disabilities in their communities.

Methods:Parallel literature reviews of best practices in adult learning methods and supports for parents
with disabilities were conducted to identify existing research. Subject matter experts in the areas of law,
case management, and psychological/parenting assessment were interviewed. Parents with disabilities
provided feedback during development and upon completion of the curriculum.

Results:There is an abundance of literature highlighting the social and institutional bias against
individuals with disabilities becoming parents but a paucity of information concerning how best to
support these families. Examples of the kinds of supports needed include: Individualized assistance to
learn parenting skills, help with money management, and crisis or emergency preparation. High-
frequency needs experienced by individuals with disabilities, including housing, transportation, and
employment, are often more challenging with the addition of parenting. The evidenced-based
curriculum addresses each of these needs from a developmental perspective.

Discussion: The curriculum is designed as an interactive presentation with small group activity
participation. Research shows this engages the audience to increase retention and allows for
appreciation of the value they bring by sharing their real-life experiences. The curriculum highlights why
parents with disabilities may need unique supports building from the already established strengths of
many case managers. It also briefly introduces advocacy strategies that can help protect parents with
disabilities from discrimination. The curriculum provides tangible parental supports to case managers to
utilize local resources, which also strengthens the family’s support network in their community.

Conclusion/Next Steps:Implementation of this evidenced-based curriculum is expected to take place in

Cincinnati during Summer 2019. Expansion to surrounding counties is also under consideration. Early
evaluation of the pilot sessions will be incorporated with feedback from parents with disabilities to
finalize this product for future dissemination.