A Global Voice for Autism

A Global Voice for Autism: Empowering women to support children with autism

Minneapolis, United StatesJenin, Ramallah (now expanding in Jordan and USA), Palestinian Territory
Year Founded:
2012
Organization type: 
nonprofit/ngo/citizen sector
Project Stage:
Scaling
Budget: 
$100,000 - $250,000
Project Summary
Elevator Pitch

Concise Summary: Help us pitch this solution! Provide an explanation within 3-4 short sentences.

A Global Voice for Autism empowers mothers in conflict-affected communities to support their children with autism. We combat the isolation often experienced by mothers of children with autism by uniting them in cooperative communities to support their children with autism. 

WHAT IF - Inspiration: Write one sentence that describes a way that your project dares to ask, "WHAT IF?"

What if we lived in a world where having a child with autism was seen as an opportunity to come together with the community to learn rather than as a reason for women to feel overwhelmed and ashamed?
About Project

Problem: What problem is this project trying to address?

In conflict-affected communities, the plethora of economic, safety and medical challenges often leaves families of children with autism marginalized. Furthermore, stigma related to autism leads many families to hide their children with autism in their homes. This means that 1) Children with autism cannot access education or engage with their communities. 2) Mothers are isolated from their communities as they care for their child at home.

Solution: What is the proposed solution? Please be specific!

Our 4-part program addresses these challenges: 1) Community-based parent training cooperatives that teach mothers to support their children using evidence-based practices and then support them in the formation of cooperatives where they provide therapy to each other’s children. 2) Parent and sibling peer support groups that provide a safe spaces for family members to discuss strategies, joys and challenges of supporting an individual with autism while engaging in an interactive self-development curriculum. 3) Community education initiatives that reduce autism stigma through lectures, television and newspaper advertisements and community-based campaigns. 4) Online parent training sessions that provide individualized training to mothers.

Awards

Featured at the United Nations for World Autism Awareness Day 2013, Resolution Fellowship, British Shalom-Salaam Trust two time grant recipient, Clinton Global Initiative University featured commitment
Impact: How does it Work

Example: Walk us through a specific example(s) of how this solution makes a difference; include its primary activities.

When Mother A joined our Ramallah program she was ashamed to show our team her son, E. He could not sit still for 30 seconds and she believed E's autism was her fault. Our cooperative program taught her skills to help E sit and learn, and paired her with mothers in similar situations. They worked together and within 3 weeks E was sitting for 5 minute stretches completing activities. She made friends with other mothers and realized E's autism was not her fault. Her other son completed our sibling support program and learned games to play games with E. During the last month of the program, Mother A agreed to take E on assisted outings where she learned skills for managing him in the community and informed shopkeepers about autism.

Impact: What is the impact of the work to date? Also describe the projected future impact for the coming years.

To date, A Global Voice for Autism has served 24 families of children with autism and more than 40 siblings. We have reached over 730 people in Palestine with our community lectures about autism. We have also engaged local volunteers who have since decided to pursue a career related to autism. 4 of our Palestine volunteers have switched their majors or pursued graduate programs in special education that they say were inspired by our program. -Every child who has come into our program without an independent method of communication and has developed one (through pointing, sign, speaking or picture exchange). -Significant decreases in parental stress levels as measured by pre and post-program evaluations. (Average 3pt decrease on scale 1-5) -Significant increases in parental confidence and activation as measured by Insignia Health's Patient Activation Measure (2 level increase average)

Spread Strategies: Moving forward, what are the main strategies for scaling impact?

A Global Voice for Autism has the potential to revolutionize global perceptions of autism and to change the reaction to autism from shame to excitement around new opportunities for community-building. In 5-10 years we plan to establish sites at least 10 ongoing community-based sites in communities throughout the Middle East and 10 sites in refugee communities in the U.S. We create a culture of BCBAs who support families internationally through our program. Mothers will connect through an online network where they will support each other from across the world.
Sustainability

Financial Sustainability Plan: What is this solution’s plan to ensure financial sustainability?

By providing private online parent training sessions that generate $60/hour, and by having families in community-based programs contribute toward their service costs on a sliding scale, A Global Voice for Autism is able to remain financially sustainable. To accelerate our impact, we apply for grants from foundations and secure relationships with corporate sponsors that help us spread community-based programs to new conflict-affected communities.

Marketplace: Who else is addressing the problem outlined here? How does the proposed project differ from these approaches?

The Global Autism Project utilizes a train the trainer model and sends BCBAs and ABA therapists to communities in need around the world. However, they primarily focus on communities affected by poverty and we focus on communities affected by conflict. So far our locations do not overlap and even when they do, our mother training program supplements their train the trainer program. In Palestine, the Happy Child Center supports children with disabilities through an hour of therapy a week. We are different because we give mothers tools to support their children at home and in the community.
Team

Founding Story

I founded A Global Voice for Autism after traveling to Jerusalem and meeting the mother of a child with autism from the West Bank. Due to the lack of autism services and stigma in her community, she returned home and hid her daughter at home. I have a close friend with autism in the U.S. and it struck me that if she had been born somewhere else, she might not have the chance to be a part of her community or go to school. When I traveled to the Palestine to visit this family, I saw the mother's mental health challenges that were induced by her isolation at home with her daughter. I sought to create a holistic program that gives all family members the tools to support children with autism.

Team

Central Team (Full-Time) 1 Executive Director 1 Palestine Program Coordinator and Director of Translation 1 Social Media Manager 1 Sibling Support Coordinator (part-time) 1 Executive Assistant Intern 1 High School Intern The next position that we would like to add on this team is a grants and fundraising manager. As we grow, we will also add program coordinators in each country and community where we work. Travel Team: 2 Jenin travel BCBAS (3 month full-time commitment: complete) 2 Jenin travel behavior specialists (3 month full-time commitment: complete) 8 Jenin-based translation volunteers (3 month full-time commitment: complete) 1 Ramallah travel BCBA (3 month full-time commitment: complete-now supervising follow-up program) 1 Ramallah travel behavior specialist (3 month full-time commitment: complete) 3 Ramallah-based translation volunteers (3 month full-time commitment: complete) 1 Ramallah-based translator (3 month full-time commitment: complete) For each community-based program we bring on a travel team that is equipped to meet the needs of the local community. Currently, we are bringing on travel team members for 3 or 6 month commitments, but as we scale, we will give therapists the opportunity to join us for a year and to travel to multiple program sites as a cohesive travel team. Follow Up Team (Part Time): 1 BCBA Supervisor (also the lead BCBA on the Ramallah travel team) 2 Board Certified Behavior Analyst Consultants 2 behavior specialist consultants 4 cooperative volunteers based in Ramallah As we expand we will bring on teams of follow-up consultants who are interested in the region of the world where we have a new community-based program. Consulting Team (Part Time): The consulting team is comprised of part time BCBAs who take on clients in private online consulting sessions. We currently have six consultants and are interviewing for additional consultants. Consultants work between 2-10 hours a week, offering support to families around the world through our online system. As the program grows, we will hire additional consultants and possibly add some full time consulting positions.
Background
Please confirm how you heard about the Unilever Awards:

The Resolution Project

Please confirm your role in the initiative (eg Founder/co-Founder) and your organisational title:

Founder and Executive Director

Which of the 8 UN Global Goals (Sustainable Development Goals) pre-selected for this competition does your solution relate most closely to? [select all that apply]

Gender Equality.

Leadership and the Unilever Awards
Please provide examples of any previous entrepreneurial initiatives you have pioneered.

A Global Voice for Autism is my first entrepreneurial initiative and I have led the organization since its founding, through two programs in Jenin and Ramallah and now, into its expansion and scaling to additional communities and private services. As a side-project, I also recently co-founded Roots for Refugees with my Syrian friend Ola, to bring companionship and long-term advocacy to vulnerable Syrian families in northern Jordan. With this organization, I am securing partnerships with large NGOs in the region who I have worked with as a freelance refugee advocate in the past in order to streamline the process and ensure that resources reach the families that need them the most, while Ola recruits Syrian companion advocates who will provide support to families as they rebuild their lives after fleeing their homes. Through this project, I am securing partnerships with the Norwegian Refugee Council, a hospital in Irbid and local charitable societies. My familiarity with the region and time spent in Jordan and Palestine has allowed me to develop trust in the communities with whom I work which is instrumental for the expansion of A Global Voice for Autism. Furthermore, my experience navigating a difficult partnership during A Global Voice for Autism's first program in Jenin (when a grant was stolen by an employee of our partner organization for his personal use) has taught me to put systems in place that ensure that our resources are directed toward families as intended. In this situation, I learned to adjust to unforeseen circumstances and work with my team to achieve the measured and desired objectives of our program.

Beyond your existing team, who else are you working with to achieve your objectives, eg partners, advisors, mentors?

Eric Glustrom-President of Watson University
George Deriso-CU professor, former Apple employee and Watson University preceptor
Michael Williams-President at Mosaic International and former Watson University preceptor
Gayle Nosal-President of the Red Empress Foundation
Angela Thiemann Dino-Cultural anthropologist and former board member at Amnesty International

The Resolution Project
Morgan Mandigo and Katie Naeve (Resolution Guides)

Kausheek Nandy-mentor from Boehringer-Ingelheim
Joanne Lawrence-Hult Business School Professor

Minnesota Department of Human Services