RI Family Support Specialists: Navigating the Way to

Resources, Support and Better Outcomes for Children and

Joanne Quinn Families
Executive Director, The Autism Project

The Autism Projects Family Support Program

AIM: To provide support, education and resources to family members , caregivers and the community to ensure they have information to make
informed decisions for and to support persons with autism spectrum disorder and related intellectual and/or communication disorders.
NEED: A central place for access to multiple resources and information on diverse programs and interventions. A place for parents and caregivers to
go to find a person whos walking the walk and able to offer support, information and comfort.
BENEFITS: Decreases Barriers to Access to Informed Care; Families are Less Isolated, Families are Empowered through Knowledge, Improved
Advocacy, Physician Productivity, Patient Satisfaction, Physician Satisfaction, Improved Comprehensive Care, Better Family/Person Centered Care1

Family Support Specialists TAP Family Support Specialists Activities

Requirements/Training
Be the parent, relative or primary care giver of a child with ASD or
related disorder
Have experience navigating the multiple systems of care in RI
Be compassionate, empathetic and able to Meet the Family Where
THEY Are At!
All FSSs complete a comprehensive training on ASD, Community
Supports, Evidence-based Interventions, RI Medicaid/Katie Beckett,
Paperwork, Positive Advocacy, Typical and Atypical Development,
Learn the Signs. Act Early Resources
Support parents and care givers with information and resources to empower them in
their parenting skills and advocacy for their child with an ASD or related Disorders (1:1
Meetings, Phone Calls, Emails, Support Groups)
Provide information on Evidence-Based interventions. Provide materials (Visuals,
Schedules, etc.) as needed to families and community members
Identify organizations to participate in training of Creating the Connections Screening
Participate in Tele-Education parent training
Help navigate access to funding, state and national resources and programming
Participate in area outreach opportunities including Resource Fairs
Help families prepare for positive advocacy with schools, IEP teams and medical staff
Present Parent to Parent and other training to families and community members

Challenges and Lessons Learned TAP Collaborations

Limited funding for sufficient FTEs HRSA
A Comprehensive training is required to develop a unified voice to the community, Department of Health
ensure a deeper understanding of the unique challenges of individuals with ASD, Department of Education
knowledge of current, evidence-based strategies for families to know how to support RI Consortium of Autism Research and Treatment (RICART)
their person with ASD RI Parent Information Network (RIPIN)
Parent or caregiver is Key to Success Act Early State Advisory Board/RIs LTS.AE. Ambassador
1:1 Contact Resources Given Support Groups Medical Home Portal Autism Content and Advisory Board
United Way RI 211 Program and Community Winnebago!
1,012 1,032 47
RI Dept. of Health In 6 years2
Outreach Impact Professionals Trained Family Members Trained Served 6,500 people with disabilities and/or chronic health condition
Had 28,094 contacts with participants
21 Resource Fairs 128 140 Addressed 12,020 presenting concerns
The Autism Project is a unique collaboration of parents, professionals and Assisted participants in achieving 89% of concerns
community members who provide quality support, training and programming 48 Family / Peer Resource Specialists statewide (RIPIN Role)
that is accessible to all for children and adults with an Autism Spectrum Total Cost Savings Projection: $5,361,096.70
Disorder, their families and those who work with them. 1, 2 Deborah Garneau, RIDOH, Peer to Peer Meeting, June 20, 2017