Pathways Project for Parents of Youth with Down Syndrome

Submitted by julie.reposa on Thu, 03/10/2022 - 13:32

Welcome to the Pathways Project for parents of youth with Down syndrome. On this page, you can find an overview of our project, our project goals, related resources, and project staff. The Pathways Project is a collaboration of Thinkwork at the Institute for Community Inclusion, Boston Children’s Hospital’s Down Syndrome Program, and the Institute for Human Development, University of Missouri-Kansas City.

Father with son that has downs syndrome

Overview

mother with child that has downs syndrome

The Pathways Project is for parents of youth with Down syndrome ages 10–14. We support parents to create a positive future vision for their children and enable them to take small steps toward achieving future goals.

Pathways is a 10-month project. It includes

  • a portfolio of tools, resources, guiding documents, and worksheets based on content from the University of Missouri-Kansas City’s Charting the LifeCourse.
  • weekly electronic outreach via a private Facebook group as a platform for family networking

 

Goals

The goals of the Pathway Project are to

  • strengthen the capacity of the Boston Children’s Hospital Down syndrome Program to deliver transition content
  • improve parents’ visions for their children’s futures as well as their attitudes and beliefs about community and workplace inclusion, and
  • encourage the identification and implementation of practical actions in daily life that support future outcomes

 

Related Resources

  • This brief shares findings from a research study conducted with parents of youths with intellectual and developmental disabilities who participated in a similar Pathways Project. 
  • This Charting the LifeCourse Experiences and Questions Booklet offers foundational content that will be delivered in the Pathways Project.
  • This Exploring Life Stages webpage offers Quick Guides in the Life Experience Series. Here you can download the “Focus on School Age” which is relevant for youth 11-14.

 

Project team

Institute for Community Inclusion at UMass-Boston

Institute for Community Inclusion, University of Massachusetts Boston

Jaimie Timmons, Principal Investigator: jaimie.timmons@umb.edu 
John Shepard, Project Coordinator: john.shepard@umb.edu 

Boston Children’s Hospital Down Syndrome Program logo

Down Syndrome Program, Boston Children’s Hospital

Nicole Baumer: Nicole.baumer@childrens.harvard.edu
Angela Lombardo: angela.lombardo@childrens.harvard.edu

Institute for Human Development, University of Missouri-Kansas City logo

Institute for Human Development, University of Missouri-Kansas City

Michelle Reynolds: reynoldsmc@umkc.edu
Jane St. John: stjohnj@umkc.edu

Funding
The Pathways Project is presented by Thinkwork at the Institute for Community Inclusion at University of Massachusetts Boston with an award from the Deborah Munroe Noonan Memorial Research Fund, Bank of America, N.A., Trustee.