Minneapolis Somali Community Autism Cooperative

What if every Somali family with a child with autism (1 in 32 families) had the tools to support and teach their child with autism?

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Founding Story: Share a story about a key experience or spark that helps the network understand why this project got started or a story about how you became inspired about the potential for this project to succeed.

I established A Global Voice for Autism after traveling to Jerusalem in 2012 and learning about the lack of autism services available to families in the West Bank. After setting up two programs in Palestine, I returned home to realize that the needs of the local Somali autism community were very similar to those in Palestine due to a lack of affordable and culturally-appropriate resources. Since then, I have been working with a group of Somali autism parents to design a program for the community. We launched the pilot program in June and have been overwhelmed by the impact within the community. A 2014 study in Minneapolis explored the barriers that the Somali, Hmong and Latino communities in Minneapolis face when raising children with autism and discovered that the language barrier and the lack of culturally appropriate services were among the top barriers. Our program provides culturally appropriate services while helping families strengthen their English in order to prepare them to engage with additional providers and supplemental support systems within the community. At A Global Voice for Autism, we believe that ALL children can learn and by making these intervention and support services available to their parents in underserved communities, we can ensure that all children have opportunities to learn and develop their skills.

Which categories describe you? (the answer will not be public)

  • White (for example: German, Irish, English, Italian, Polish, French, Caucasian)

Website

http://www.melissadiamond.me
http://www.aglobalvoiceforautism.org

Location: Where is your organization headquartered? [State]

  • Minnesota

Location: Where is your organization headquartered? [City]

Plymouth

Location: Where is your project primarily creating impact? [State]

  • Minnesota

Location: Where is your project primarily creating impact? [City]

Minneapolis

Problem: What problem is this project trying to address?

Due to cultural differences, poverty and a language barrier, Somali families of children with autism struggle to access autism services in Minneapolis. Locally, 1 in 32 Somali children have autism but few of these children get services due to long waiting lists, parental confusion and stigma. A 2014 study by the Minnesota Department of Health revealed that these barriers are preventing Somali children with autism from accessing early intervention services that will allow them to develop their communication and social skills to their full potential. This program will simultaneously help families navigate the system by providing guidance and a safe space to practice English while teaching them tools to support and teach their children with autism at home and in the community.

A Global Voice for Autism utilizes an innovative "cooperative" model to provide cost-effective autism intervention and support services to conflict-affected communities with the greatest needs. We supplement this model with services that allow us to holistically support families of children with autism in order to foster positive environments where children with autism can learn. We do this through the following programs:

1) Cooperative Model Training in evidence-based practices for autism intervention equips families with skills for teaching their children with autism at home and in the community. Through theoretical and didactic trainings we use culturally appropriate methods and examples to teach parents skills for supporting their child and other children with autism in the community. Parents engage in supervised hands-on practice with their own child and other children with autism in the program. This gives the children the opportunity to generalize their skills by working with multiple caregivers and gives parents opportunities to strengthen their skills. After the conclusion of the training, parents continue to meet weekly in their cooperative groups to provide support to one another and to work with each other's children. This program helps children with autism develop independent communication so that they can express themselves and participate in their communities.

By empowering parents to help their children with autism develop skills for communication and independence, we also aim to increase parental activation/adherence to programming that supports their children's wellbeing. In our past programs 60% of participating parents have increased their parental activation score by at least 1 point on the Patient Activation Measure (TM). Each 1 point increase correlates with a 2% decrease in lifetime healthcare costs for the child. 

2) Parent and Sibling Support and Self-Development Groups provide parents and siblings with a safe space to discuss their experiences living with loved ones with autism with their peers while engaging in interactive activities that develop self-confidence, offer strategies for strengthening relationships with loved ones with autism and teach self-care skills. These groups have been shown to increase sibling confidence and improve sibling relationships. All of the groups in the past communities we've served have continued to meet regularly for support and socialization long after the conclusion of the 12-week curriculum. This program provides emotional support to caregivers of children with autism so that the children can grow up in a positive environment with caregivers who are emotionally prepared to support their development and address their needs.

3) Community Education Lectures overcome misconceptions about autism and decrease autism stigma in the communities we serve through educational presentations and interactive Q&A sessions. Out of the 1,300+ community members who have attended our community lectures, 100% have overcome a damaging belief about autism, such as "children with autism cannot learn" or "parents cause their children to have autism" over the course of the lecture (based on pre and post lecture quizzes). This initiative fosters communities that are accepting of children with autism so that the people with whom they interact will treat them with respect and will listen to the various ways in which they might communicate. 

4) Coached Community Outings help parents develop the skills and confidence to take their children with autism out in public so that these children can engage with the community and develop relationships outside of the home. These 1:1 outings with A Global Voice for Autism's professional team give families the flexibility to address their children's most challenging behaviors and to target the issues that are preventing them from taking their children out in public on a regular basis. This initiative helps caregivers develop confidence so that children with autism can have opportunities to participate in and develop relationships in their communities. 



Is your model focused on any of the following traditionally underserved communities?

  • Communities of color
  • Children who are differently abled
  • Religious minorities (non-Christian)
  • Low-income communities

Does your model work within any of the following sectors?

  • Child and Family Services
  • Community Development and Empowerment
  • Education
  • Mental Health
  • Other

If you chose "other," please share the sector you work within here:

Note: Year Founded for A Global Voice for Autism is 2012 but the Somali program was founded in 2015

Year Founded

2012

Project Stage

  • Established (the solution has passed the previous stages, and has demonstrated success)

Example: Walk the network through a specific example of what happens when a person or group engages with your solution.

At the time Abdi and his mother Ayan joined our program, Ayan was ready to give up. Abdi was 5 years old, had an autism diagnosis, and was not speaking. Everyone in Ayan's life told her it was her fault. Poverty prevented Ayan from securing resources for Abdi, and even with money, a language barrier and cultural difference left few options in her community. When Ayan joined our program, she met other parents of children with autism for the first time. Together, they learned strategies for supporting their children and improved their English. Through her work with Abdi, he started getting dressed by himself, walking by her side in public and using words to make requests. Ayan now takes Abdi out in public, which she never used to do.

Impact: What was the impact of your work last year? Please also describe the projected future impact for the coming years.

Last Year:
-26 families served (96% of children developed independent communication for the first time or became more independent in communication)
-100% of parents decreased their stress levels by 2 points on a 5 point scale
-60% of participating families and teachers increased their Parent Activation scores by at least 1 point
-12 families took their children on community outings for the first time since their diagnoses
"I can't believe he did what I asked him to! This stuff really works!"-Somali Mother
"For the first time since I arrived here, I feel like someone is treating me like a person and not a refugee."-Syrian Mother
Our full Somali program will serve 16 additional Somali families with programs that improve skills and relationships and reduce stress levels in the next year. We will also launch our intervention for Syrian refugees in Turkey that will serve 32 families.

Organization Type

  • nonprofit/NGO/citizen sector

Annual Budget

  • $50k - $100k

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

For our U.S.-programs, we are planning to work with counties and local governments to procure the funds for these programs within their communities. Given the long waiting lists and high costs for behavior analysis services, we are able to demonstrate an affordable, efficient and culturally-sensitive way to increase accessibility to these services. As communities see the impact, social service funds will support this program [Hennepin County]

Unique Value Proposition: How else is this problem being addressed? Are there other organizations working in the same field, and how does your project differ from these other approaches?

Right now, early intervention programs in the schools and center-based programs are struggling to serve Somali families due to financial, language and cultural barriers. We overcome these by:
Financial Barrier: Cost-effective cooperative model services to equip caregivers with skills and support to teach their children and other children with autism in the community
Language Barrier: Interpretation services available at all sessions, safe space to practice English
Cultural Barrier: Culturally-specific curriculum designed with community input and mixed Somali and non-Somali team for program

Reflect on the Field and its Future: Stepping outside of your project, what do you see as the most important or promising shifts that can advance children’s wellbeing?

The most important shift to advance children's well-being is the realization that all children learn differently and that education is not a one-size-fits-all program. Nurturing strengths from mathematics to compassion is key for creating a better world for children and for all. By giving children permission to learn differently and focusing on strengths, we can cultivate a more respectful society for all children where bullying is reduced and every child is free to discover what he/she has to contribute to the world. Training teachers to be student-focused and flexible is crucial.

Source: How did you hear about the Children’s Wellbeing Challenge? (the answer will not be public)

  • Email

Referral: If you discovered the Challenge thanks to an organization or person other than Ashoka, who was it? (the answer will not be public)

N/A

Program Design Clarity

A) Children with autism in conflict-affected http://communities...in this case, the Minneapolis Somali Community
B) Families participate in 5 hours of training an 1 hour of support per week and 1 community outing every 2 weeks. 3 hours are theoretical training (parents only) and 2 hours involve hands-on skills practice (parents and children with autism) (See solution above for more details)
C) Apartment community room in the Minneapolis Cedar Riverside neighborhood 2x/week
D) A team of Board Certified Behavior Analysts, behavior specialists and Somali community parent liaisons runs the program

Community Leadership

Our program is designed in collaboration with a focus group of Somali autism families. All modules are designed/selected based on the needs expressed by these parents and we have parents on our team who continue to provide feedback and insight into the program throughout its implementation. We also work closely with the Somali Disability Services Outreach Coordinator from the Department of Human Services to encourage the development of services.

Age of Children Impacted

  • 3 - 5
  • 6 - 12

Spread Strategies

Given the influence of parent liaisons in our programs, we aim to create parent autism advocates who we train and who offer this training and guidance to parents in their communities. We can then expand this model to the Hmong and Latino communities in the area and around the U.S. to create networks of culturally-appropriate autism support. To do this, we will work with insurance companies who have a stake in our outcomes to disseminate this.

Reflect on how your work helps children to thrive. How are you cultivating children’s sense of self, belonging, and purpose through your model?

We believe that communication is a human right and that the ability to communicate is fundamental in children's ability to develop meaningful relationships, express needs, learn and thrive. In order to address this, we take internal and external approaches, giving children with autism the tools to communicate independently and by fostering communities that will listen to this communication so these children can participate, learn and thrive.

Leadership Story

I established A Global Voice for Autism in 2012 after traveling to Jerusalem and meeting a Palestinian family that did not have access to autism services within their community. As a result, they planned to lock their daughter with autism in their home. I founded A Global Voice for Autism on the belief that all children deserve the chance to learn and be a part of their communities. After setting up 2 sites in Palestine, I connected with members of the Somali community in my native Minneapolis and upon learning that this community had similar needs, sought to bring the model to my community.

What awards or honors has the project received? (Optional)

Somali Program:
-Autism Speaks Community Grant for pilot
-MUHSEN sponsorship for pilot

A Global Voice for Autism:
-Featured at the United Nations for World Autism Awareness Day 2014
-Open Society Foundation Grant
-Watson University Scholar
-The Resolution Project's Resolution Fellowship

Organization's Twitter Handle

@AGVFAutism

Organization’s Facebook Page (URL)

http://www.facebook.com/aglobalvoiceforautism

Leader's LinkedIn Profile (URL)

https://www.linkedin.com/in/melissajdiamond

Evaluation results

6 evaluations so far

1. Relevance: Does this project seem to help children (ages 0 to 12 years) develop a strong sense of self, belonging, and purpose?

5 - Yes, this is great! The project lays out a strong, compelling case for how its model nurtures children’s wellbeing. - 16.7%

4 - It seems like a good fit, and the model talks explicitly about children’s wellbeing. - 66.7%

3 - I think so. The project seems related to children’s wellbeing, but the logic is vague. - 0%

2 - Not sure. The project doesn’t have much to do with wellbeing, or it doesn’t give enough information. - 16.7%

1 - Nope, this project definitely doesn’t fit the challenge brief (e.g., It doesn’t help kids younger than 12, isn’t in the U.S., etc.) - 0%

2. Innovation: Does this project tackle children’s wellbeing from a new angle?

5 - I loved this! The project describes a novel model that addresses important cultural or systemic barriers. - 16.7%

4 - This is pretty cool. The project is addressing an important problem in a new or compelling way. - 33.3%

3 - I feel like there’s something there, but I want more details about what makes it distinctive. - 16.7%

2 - It’s a good project, but I’ve seen others like it before. - 0%

1 - It was confusing or hard to tell what it made it different. - 33.3%

3. Social Impact: What is this project’s potential for creating positive social impact?

5 - Lots of potential. This project is achieving impressive results, and it’s growing quickly. It could absolutely inspire changes in the ways we approach caring for kids nationally, across sectors (e.g. childcare, healthcare, education). - 16.7%

4 - Pretty good potential. This project demonstrates significant positive impact so far, and it could scale regionally or nationally one day and fundamentally change how a system operates (e.g. childcare, healthcare, education). - 33.3%

3 - Budding potential. This project is creating local impact, but it would take a few adjustments before it could scale. - 16.7%

2 - Some potential. This project demonstrates some initial positive impact, but it would require major changes before it could scale. - 33.3%

1 - Limited potential. This project has great intentions, but it looks like it does not include key drivers of a shift towards children’s wellbeing. - 0%

4. Overall, how do you feel about this idea?

5 - This idea rocked my world. It’s awesome! - 16.7%

4 - This idea seems really exciting. With a little more polishing, it’d be among my favorites. - 50%

3 - I think the idea is great, but it needs some work before it moves onto the next round. - 0%

2 - I liked it fine but preferred others. - 16.7%

1 - It didn’t make my heart beat faster. Needs significant revisions. - 16.7%

5. Offer some feedback. Where should this participant spend some time revising?

DEFINING THE PROBLEM. Make sure to articulate the root causes or main barriers of the social issue your project addresses. (Founding Story, Problem, Solution). - 25%

CLARITY OF MODEL. Make sure to mention (a.) the beneficiary, b) the main activities, and c) how those activities drive social impact. Keep it streamlined! - 100%

MARKETPLACE. Make sure to research other players in this space and articulate how this project is different. I didn’t get a complete sense of how this project compares to others. - 50%

IMPACT POTENTIAL. Make sure to use specific numbers to describe what your project has achieved so far! And consider how you might scale the model or its insights, through partnerships, trainings, or franchising. - 25%

WRITING STYLE. Try to stay concise and make it vivid. Avoid jargon. - 0%

Nothing stands out! I thought it was great. - 25%

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Attachments (2)

Autism Community Leg Report Feb 2014.pdf

This is a study published by the Minnesota Department of Health that reveals the autism service needs gaps in the Somali community. This study also demonstrates similar needs in the Hmong and Latino communities and indicates that there is significant room for the expansion of our services within minority communities in the U.S. A GLOBAL VOICE FOR AUTISM WAS NOT INVOLVED IN THIS STUDY IN ANY WAY AND IS SIMPLY USING THE INFORMATION AS VALUABLE INSIGHT IN THE DEVELOPMENT OF OUR PROGRAMS.

Our Difference-A Global Voice for Autism.pdf

Impact report for past programs.

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Team

I really appreciate how you include children's independent communication measures, but also, parental stress. Thanks so much for sharing and for all that you do! 

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Team

Thank you for your feedback and support!

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