The Impact of Peer-to-Peer Mentoring on Participant Direction: Successes, Challenges, and Looking Ahead

Authors: David James (DJ) Savarese, Co-Chair Alliance for Citizen Directed Supports; Marian Frattarola-Saulino, Co-Chair Alliance for Citizen-Directed Supports and Co-Founder and CEO, Values Into Action; and Jamie Ray-Leonetti—Associate Director of Policy, Institute on Disabilities at Temple University

What is Participant-Directed Services?

Participant-Directed Services (PDS) are home and community-based services that help people of all ages across all types of disabilities maintain their independence and determine for themselves what mix of personal assistance supports and services work best for them.¹

Pennsylvania Autism and Self-Direction Outreach and Mentoring Project

This initiative is a short-term project of the Institute on Disabilities at Temple University funded by the PA Developmental Disabilities Council. The Institute partnered with Values Into Action to provide education to people with autism about self-directing one of more of their supports and services. Project participants were given an opportunity to meet one-on-one with a Certified Supports Broker. Supports Brokers taking part in this project worked to identify and enhance natural supports for people with autism. This could include matching someone with autism who is self-directing with someone interested in learning more. This allowed for both peer-to-peer mentoring and mentoring from the Supports Broker.²

Lives-in-Progress: An Interactive Map By and For People Who Self-Direct

A national online map of multiple pathways to self-direction based on the real lived experience of William and others:

• 2-8 mentors per state
• Stories would include other resources and advice. For example, William might offer advice about:
  » First steps toward self-direction
  » How to find and hire a support provider
  » Building connections and a career in artistic communities
• Hyperlinks provide fast, easy access to the various resources, programs, and supports used by each mentor
• Searchable by state (type of region), vocation, talents, interests

Designed to dismantle common barriers of communication, cost, and cultural misassumptions

Hosted by The Alliance for Citizen Directed Supports

Common Obstacles to Self-Direction That Lives-in-Progress Will Overcome

• OBSTACLE: Many well-intentioned, nondisabled people sometimes perpetuate stereotypes regarding the life outcomes of disabled adults
  ➡ LIVES-IN-PROGRESS: Led by and for self-directing members of the disability community
• OBSTACLE: Disabled adults rely on luck and personal networks to figure out self-direction
  ➡ LIVES-IN-PROGRESS: Free, accessible, centralized map of lived experiences searchable by state, interests, talents, vocations
• OBSTACLE: Individual mentors practicing self-direction volunteer one-on-one advice and counsel, relying heavily on free labor from the most impacted
  ➡ LIVES-IN-PROGRESS: Pay mentors for their time and expertise
• OBSTACLE: Compounded for the multiply marginalized and alternatively communicating
  ➡ LIVES-IN-PROGRESS: Begin first with mentors who self-identify as multiply marginalized and/or nonspeaking

Resources on Peer Mentoring and Self-Direction

• https://www.washington.edu/doit/sites/default/files/atoms/files/Chapter-...
• https://www.appliedselfdirection.com/sites/default/files/Participant%20D...
• https://www.aaidd.org/news-policy/policy/position-statements/self-determ...
• The Alliance for Citizen Directed Supports: https://citizendirectedsupports.org/

1. http://www.nasuad.org/hcbs/participant-directed-services

2. https://www.dhs.pa.gov/Services/Disabilities-Aging/Documents/Everyday%20...(c_241391).pdf

Temple University College of Education and Human Development, Institute on Disabilities

CONTACT: iod@temple.edu

DJ Photo: Pamela Harvey Photography

FUNDING: This project is supported by a grant from the Pennsylvania Developmental Disabilities Council; in part by grant #2001PASCDD-02, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official ACL policy.