A Global Voice for Autism

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A Global Voice for Autism: Democratizing autism support services

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
Website:
http://www.aglobalvoiceforautism.org
Twitter: 
https://www.changemakers.com/AGVFAutism
Facebook: 
http://www.facebook.com/aglobalvoiceforautism
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Project Summary
Elevator Pitch

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

A Global Voice for Autism exists to help children in conflict-affected communities communicate independently. Our program gives all stakeholders in the lives of children with autism the tools to maintain self-care and to provide evidence-based support to individuals 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 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 parents 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 families.

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, 4 of whom have since decided to pursue a career related to autism. -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) -In the future we will franchise our curriculum and framework to local NGOs and governments who can bring in qualified staff and offer programs

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 will 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. Mothers will connect through an online network where they will support each other from across the world. We will also franchise our model so that NGOs and governments in conflict-affected communities can offer programs.
Sustainability

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

By providing private online parent training sessions at $6,000/year where families pay upfront for services and by having families pay for community-based programs on a sliding scale, we sustain ourselves financially. 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 parent training program supplements their train the trainer program. In Palestine, there is an organization that supports children with autism through 1hour of therapy a week. We are different in the we use evidence-based practices and give families tools to support their children.
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.
CO-CREATION IDEA: Please offer a brief description of how you imagine a win-win partnership with Boehringer Ingelheim to better serve unmet needs in health. (Hint: Please mention the underlying business model envisioned that would make such a partnership sustainable.)

Our partnership will revolutionize approaches to autism in conflict-affected communities. The facilitation of culturally appropriate autism programs will increase access to services and decrease the lifetime cost of supporting a child with autism. In collaboration with BI we will rapidly expand to new communities and gain BI’s help in identifying communities with the greatest needs. Simultaneously, BI will gain insight into the health needs of conflict-affected communities in the U.S. and abroad and will increase its impact and recognition in the Middle Eastern Market beyond it’s program for stroke patients. We will connect BI to our government and NGO partner, make BI a leading company in autism support and universalize support for autism.

NEEDS: Based on you response above, please specify which of the following resources, operations or expertise by Boehringer Ingelheim you imagine leveraging to actualize the proposed co-creation opportunity. Please check all that apply. (Hint: while financing is often critical to scale, we are also interested in understanding what other assets or expertise could be leveraged).

Relationships/New Contacts, Marketing/Communications Support, Legal Support, Public Policy Knowledge, Access to Capital.

EXPLANATION OF NEEDS: Please explain your choices in more detail.

Relationships/New Contacts-B.I. can help us identify and connect with partner organizations and families in need
Marketing/Communications Support-B.I. can help us raise global awareness about autism in conflict-affected communities to garner additional support and alter perceptions
Legal Support-501©3 process and for establishing international sites that need permits for ongoing operations
Public Policy Knowledge-Leveraging U.S. ABA insurance mandates to make services accessible to additional families
Access to Capital-Connect with funding sources to expand global community sites

OFFER: What are the main assets you may contribute in a co-creation partnership with Boehringer Ingelheim that would better serve unmet needs in health?

Deep understanding of an unmet need in a specific market/context, Access to and established trust with customers/beneficiaries, Insights into behavior change.

FOCUS AREAS: Which of the following best describes the main focus of your project? (select all that apply)

Improving the affordability of healthcare (e.g., microinsurance, reducing the economic cost of care), Holistic solutions that work across the entire care continuum (including education, prevention, detection, treatment, management, follow-up), Remote care solutions for health management, treatment, and diagnosis.

SECONDARY ENTRY FORM
Please share what your organisation and Boehringer Ingelheim will Co-Create together

A Global Voice for Autism and BI will leverage BI’s understanding of the population in Ingelheim refugee camp and A Global Voice for Autism’s understanding of autism support for conflict-affected populations to provide family training and support to autism families in Ingelheim refugee camp. We will be able to support families experiencing the added challenge of supporting a loved one with autism amidst their refugee experience while gaining insight into the healthcare needs of the rapidly-expanding refugee population in Germany and in Europe and collecting data that can be monetized through the improvement and implementation of future refugee healthcare programs.

Please specify what your Co-Creation will result in:

a new service.

If you selected "other" above, please explain:
Please provide a 1-2 sentence summary of your Co-Creation idea

A Global Voice for Autism and Boehringer-Ingelheim will co-create an autism parent training cooperative that gives families in Ingelheim refugee camp the tools to support their children with autism. BI will benefit from this program by addressing an unmet need in a camp where it is already assisting and by collecting data that can be monetized through the development of future programs that meet the healthcare needs of refugee populations and transient populations.

How does this project link to the core mission of your organisation?

A Global Voice for Autism exists to help children with autism in conflict-affected communities communicate independently. We do this through a holistic approach that addresses the emotional needs of all family members in order to create an environment that is supportive for the child with autism’s learning. This co-creation will further the mission of our organization by enabling us to give families affected by autism in Ingelheim refugee camp the tools to support their children with autism.

Beyond social impact, how does this project link to Boehringer Ingelheim’s core business?

A Global Voice for Autism focuses on training the caregivers to help the children with autism. Boehringer Ingelheim could learn from this training the caregiver approach to improving the adherence of its medications especially in areas like Oncology where BI has a presence and caregiver support is very critical. Getting valuable insights on caregiver training from A Global Voice of Autism, Boehringer Ingelheim could offer value-adding counseling services to qualifying cancer patients in combination with prescribed Boehringer Ingelheim drugs(s). These services could be provided by specialized external organization(s) directly or in form of vouchers to support psychosocial needs and the patient’s ability to manage concerns and cope with stigma (similar to autism) and obstacles beyond immediate disease-related issues in their daily life, and beyond the scope of issues supported by their immediate family and caregiver networks.
The oncology bundled offer initiative could take Boehringer Ingelheim’s pharmaceutical offering to the next level of patient-centricity “beyond the pill.” This value- added service complements the prescribed Boehringer Ingelheim oncology drug treatment, as it:
• Supports patients in new ways by providing a professional local resource to help address immediate concerns, including psychological, social, financial, communication and workplace needs.
• Builds favorable support for prescribing Boehringer Ingelheim oncology drug(s) by physicians
• Positions Boehringer Ingelheim as a socially-responsible and patient-centric first-mover innovator.

What are the specific inputs and actions that each side will contribute to this Co-Creation idea based on each of your unique competencies and experiences?

A Global Voice for Autism will contribute it’s data backed approach to teaching conflict-affected populations to support their children with autism, a trained staff team of Board Certified Behavior Analysts and behaviour analysis professionals, evaluations, surveys and data collection methods that measure family healthcare needs, stress levels and program efficacy and curriculums for parent training, parent support and sibling support programs.

Boehringer-Ingelheim will contribute distribution channels within the Ingelheim refugee camp for program promotion, assistance in procuring translators for the program, any existing data and knowledge of families of children with autism/autism symptoms in the refugee camp (A Global Voice for Autism will create materials to bring in additional families), space for the training programs and any data collection tools that will provide additional valuable information to Boehringer-Ingelheim about healthcare needs and habits in refugee communities.

Please describe the potential revenue model for this Co-Creation idea.

The co-creation will generate revenue through the collection of data that can be used by both organizations to improve the efficiency of their existing programs and to develop new programs for their target populations. A Global Voice for Autism can use this data to gain support from governing bodies in the future who will purchase A Global Voice for Autism training programs for their constituents and refugee populations under their care and BI can use these data and program insights improve the efficacy of programs offered to refugee populations in Europe, to integrate caregiver training programs into their approach to wellness as well as to identify and act upon unmet healthcare needs in these refugee populations.

What possible risks or challenges do you foresee?

The greatest risk is that the refugees might not be able to dedicate themselves fully to learning strategies to support their children with autism while they are struggling to meet basic needs. Additionally, if we are working with a linguistically diverse refugee population, offering the program simultaneously in multiple languages will be a challenge. However, even if the families are unable to demonstrate improvement in their children’s skills, they will still benefit from a community of support and shared experience and the co-creators will benefit from the data on what the population was able to handle and to what degree they were able to participate.

Is there anything else you would like to share about your Co-Creation idea?

In many of the countries from which refugees are fleeing (Syria, Iraq, Afghanistan etc.) the autism stigma is so significant that many families choose to hide their child’s autism diagnosis from the community. This adds a layer of trauma for these families when they flee their countries and find themselves in close quarters with others, no longer able to hide their children with autism. Additionally, research shows that mothers of children with autism in the United States experience trauma comparable to that of a combat soldier. This reality combined with autism stigma and refugee trauma makes autism families some of the most vulnerable refugees and there is currently a needs gap in supporting these families.

How much input do you hope to receive from Boehringer Ingelheim?

I’d like to implement together.

If you selected "other" above, please explain:
Besides Boehringer Ingelheim, what other types of partners might be valuable to carrying out your Co-Creation idea, and why?

Capacitar International Training Network-Teaches wellness techniques to individuals who have experienced trauma that can benefit both the staff and the caregivers taking part in the program.
UNHCR-they have extensive networks for supporting refugee populations and systems for evaluating the needs of refugees inside of refugee camps.
Handicap International-provides programs to people with disabilities in refugee camps and can provide valuable insight for this program.
Humans of New York or another news source that focuses on individual narratives and can tell the stories of the families we support through this partnership to raise awareness.

File attachments: 
File bi_co-creation_agvfa.docx