Facilitating Community Supports for Students with Significant Disabilities

Emma Fialka-Feldman & Sophia Johansson

Keywords

intellectual disability, speech therapy, physical therapy, occupational therapy, access, basic needs, accessibility, relationships

Mass Families Organizing for Change (Mass Families or MFOFC) is a grassroots, statewide network of people with disabilities and their families, and has a 30-year history of responding to the needs of families. We partner closely with four different human services providers who contract with the Massachusetts Department of Developmental Services (DDS) to provide leadership training and to support the skill acquisition of families whose loved ones are eligible for services. This case study describes our work in partnership with educator Emma Fialka-Feldman to create MatchUS, a community-driven effort to connect educators, related service providers and families to support students with disabilities during the pandemic.

When schools began closing in March, members of our network experienced a “de-materializing” of the existing service system, leaving families with few supports. But during this time we also saw and continue to see an odd combination of flexibility, resources, and unprecedented opportunities to influence and partner with other stakeholders. In this spirit, we began holding “Community Calls” to better understand what our community was experiencing and think together about solutions. Our intention was to support vulnerable families in sharing their “on the ground,” real-world experiences so as to improve the time to response of public officials and the school system. Equally important, families could help solve and share what is working to help amplify solutions.

“Community Calls” for Understanding and Action

We were strategic in our invitations to our Community Calls, while also making the forum available to everyone who was interested in participating. We had to quickly build meaning and credibility. This meant ensuring the presence of personalities, voices, and representatives of different efforts and expertise. The conversations on these Community Calls all had a sense of urgency and focused on potential solutions. We heard from family leaders, folks at our state’s Parent Training & Info Center (in Massachusetts, this is the Federation for Children with Special Needs), our protection and advocacy agency (in Massachusetts, this is the Disability Law Center), representatives from our state’s Intellectual/Developmental Disabilities Agencies, the professional organization for special education advocates in our state, public interest and legal services law firms, family advocacy organizations (such as our state’s chapter of Family Voices), and family networks.

In these calls, we heard parents talk about not receiving any communication, work, or assignments from their child’s teachers. Parents described a need for speech, occupational, and physical therapy services but little guidance from state or district leaders. Families, many of whom have children with significant needs, felt alone without any of the supports their children had previously received every day.

“While systems can be places of promise, now more than ever we must turn to one another as neighbors and community members. We must work outside of the systems of schools, services, and institutions to create the relationships we all need to support each other in this crisis. This is the work of MatchUS. This is the work of creating intentional supports for families who have children with disabilities, by connecting them with educators, therapists, and service providers who are showing their creativity, willingness, and deep commitment to children by volunteering their time.” —Emma Fialka-Feldman

A Way Forward: An Educator Partners With MFOFC

Emma writes: As an educator with an adult brother with an intellectual disability, and as someone deeply concerned about how students with disabilities would be served during this time, I participated eagerly in the first of the Community Calls. I had previously known of the work of Mass Families and had used some of their resources to support my own students with disabilities. During the call, I heard families share their deep concerns and frustration with teachers and school districts. As an educator, I felt both a strong disappointment in the system’s failure and a deep belief that many educators do want to be useful. A day or so later, Sophia and I chatted to follow up about the concerns I’d heard, as I was one of a few educators on the call. We brainstormed possible next steps to immediately support families in this crisis, knowing that schools, districts, and the state were going to take time to create a rollout of special education services.

I created a survey and pulled on my resources. These include a wonderful bilingual student teacher who acts as our English-Spanish translator, allowing us to broaden our outreach. Both surveys—the one for educators and the one for families—were designed to quickly gather information to make matches between educators and families who need supports.

Inspired by the work of Mutual Aid Networks, we imagined that this matching process would pair a family with a child who has a specific disability and need, with an educator/therapist/social worker, etc., who has a resource/skill to share within that need. We matched by age, experience (early childhood, middle grades, transition 12+, etc.), licensure/skill experience (general educator, special educator, social worker, physical therapist, etc.), content skills (behavior, math, reading, social skills, communication, etc.), and took into account any notes from the family.

I reached out to other educators to help take the data from both of the surveys to create the matches. Leveraging their Google Sheets skills, they sorted and filtered the surveys to narrow down matches. They took what information we had from the surveys about educator skill sets and matched it with descriptions and needs families had shared. Not all matches are perfect, and a handful didn’t flourish because of unresponsiveness either from the educator or the family.

Reaching Out to Networks

We shared the survey with our networks, including the local teachers union, Parent Training & Info Center (the Federation for Children with Special Needs), our protection and advocacy agency (the Disability Law Center), representatives from our state’s intellectual/developmental disabilities agencies, the professional organization for special education advocates in our state, public interest and legal services law firms, family advocacy organizations (such as our state’s chapter of Family Voices), and family networks. We prioritized resource hubs, including agencies that work with families, beyond special needs communities.

Responses immediately started to come in! It was a treat to see familiar names and to see so many others (families and educators) who were new to us. We saw people complete the surveys from places as far as Hawaii, and we had families who requested matches to educators who spoke Haitian Creole, Arabic, and Spanish. As demands grew for specific needs (e.g., speech therapists, transition specialists, or a particular language need), we leveraged our networks—and within hours a new educator would fill out the form. It was truly a community-driven response to the crisis! As of April, we have matched over 160 families. Requests continue to come in daily, and we’re ready and willing to make matches outside of Massachusetts.

A Community Response With Impact

Anecdotal evidence and data collected from follow-up surveys illustrate how the effort has been an overwhelmingly positive experience for both educators and families. Educators consistently said they felt useful or very useful. Families consistently said that the matches were helpful or very helpful. It’s important to note that matches played out in different ways. Some matches had only one conversation over the phone or through a video call, while other matches have led to daily reading tutoring, opportunities to read a book series together, and/or connections to other organizations. Families felt so grateful to talk with an educator who “didn’t have an agenda.” And educators felt so honored to be able to give back to their community. Some have even called these encounters “lifesaving.”

Reflections

What we learned/big takeaway

All people need opportunities to share their experience, ask for support, and provide support to others when they’re able to. Interdependence (not independence)—the belief that we all need support to thrive—is how we all will make it through this moment of crisis. We learned that when bringing people together, it’s beneficial to be welcoming to everyone and to also specifically invite stakeholders who have a history or reputation for the types of contributions and outcomes the convening body is hoping to achieve.

We’re still working on figuring out how to make sure families, especially families who speak languages other than English, access the matchmaking form so they’ll have the opportunity to connect with an educator.

What we are still figuring out

We’ve learned that what makes the MatchUS process so impactful is the intentional one-to-one relationship. This relationship provides families with: 1) information and concrete steps they can take for support, 2) opportunities to be and feel heard, and 3) the knowledge that others care about them and their needs in this moment. It’s important to be intentional about asking for participation and contributions in your efforts to support educators and families of students with disabilities. Ask families what they need and then find the resource and connect in meaningful ways. People want to give but they may not know how. We shouldn’t underestimate the creativity, ingenuity, and possibilities that can grow from conversations and connections between educators and families.

What I would tell other leaders during this time

Resources

  • Mutual Aid Networks - The work in which Sophia Johansson and Emma Fialka-Feldman are engaged is influenced by Mutual Aid Networks.  This resource explains each component of the framework.

  • MatchUS - The official site of MatchUs, this resource contains links to both the family and educator/service provider survey.

  • What Matters: Reflections on Disability, Community, and Love by Jance Fialka - Emma, the educator featured in this case study, mentions her adult brother with an intellectual disability.  This link provides an opportunity to purchase her family’s book.

  • “Intelligent Lives” Documentary - This resource contains a preview of the documentary featuring Emma’s family’s story.

  • Family Resources for Students with Complex Learning Needs - This case study begins with “community calls” for families and practitioners to share what is working for their children and students.  This resource, maintained by the PA Training and Technical Assistance Network, highlights some specific resources for students with disabilities in a variety of content and practice areas.

  • Providing Supports to Students with Low-Incidence Disabilities - Sophia and Emma share that families were looking for guidance on how to support their students at home.  This resource from Marshall Street, provides practical tips and resources for supporting students with significant disabilities during at-home learning.

  • Practical Access Podcast - Sophia and Emma acted quickly to create a community for parents in need.  This podcast from two professors at the College of Community Innovation and Education at the University of Central Florida may be helpful to families looking for similar sharing of practices.  One episode of interest may be Episode 5: Supporting students with significant needs in online environments.

  • How to Break Down Communication Barriers Between Teachers and Families - Families reported to Sophia and Emma that they were not receiving communication from their children’s teachers.  This resource provides possible solutions to communication barriers that may exist between home and school.

School background

Mass Families Organizing for Change (Mass Families or MFOFC) is a grassroots, statewide network of people with disabilities and their families. It has a 30-year history of responding to the needs of families. We partner closely with four different human services providers who contract with the Massachusetts Department of Developmental Services (DDS) to provide leadership training and support the skill acquisition of families whose loved ones are eligible for services.

About the Author

Sophia Johansson is the Northeast regional coordinator for Mass Families Organizing for Change. She first connected with Mass Families in 2013 when she attended the Family Leadership Series as an economically vulnerable single parent to a young child who had recently been diagnosed with a developmental disability. Just two years later, she was rolling out the inaugural round of Advocacy Bootcamp! In her role as board chair and Northeast regional coordinator, she empowers other families to articulate and realize their own visions. She brings to this work her passion for social justice and a talent for bringing people together to accomplish individual and shared goals.

Emma Fialka-Feldman has been an elementary teacher in the Boston Public Schools for seven years. A teacher with a deep belief in the power of inclusive schools for students with and without disabilities, she has worked to promote inclusive practices in her school, union, and district. She has written and presented nationally about the importance of inclusive education and how to lead Individualized Education Program (IEP) meetings with compassion and equity. Her family’s story of inclusion, disability, and community is featured in What Matters: Reflections on Disability, Community, and Love by Janice Fialka and in Dan Habib’s documentary Intelligent Lives.

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