Communities for Special Needs Families

Throughout our lives, we rely on others around us for different purposes including babysitting, educational supports, and many other needs. Being a family with special needs is no different, and as a matter of fact, we may need to lean on these supports more. This could be included in what we would call our community.

A community generally being a group of people, or organizations, sharing common interests and goals. This generally is considered people living near each other, however, can expand to others outside of our county, state, and country.

In addition, each family’s community may look different from each other.

To define a “community,” we must first have a comprehensive picture of an individual and their family by determining who is involved and who supports or empowers them in their daily lives.

“Alone, we can do so little; together, we can do so much.”

– Helen Keller

According to the article “10 Traits That Make a Positive Community ”, a community is “based on networks of social relationships that extend beyond the immediate family and are expected to have some longevity.” The characteristics necessary for an effective community are shared purpose, goals, values, interests, and customs. We can encourage the formation of peer support networks where members can share

knowledge, experiences, and emotional support. Establishing effective communication channels, both online and offline, facilitates interaction and collaboration among community members. 

The Essence of Community

Our immediate community includes the place where we live and the various networks, organizations, and resources within it. 

In today’s world, thanks to the World Wide Web and social media, our communities are no longer limited to local resources. It can include forums, social media groups, newsletters, and regular meetings.

Support For Special Needs Families

Why would a family need this support, you ask? Well, raising a child with special needs can be emotionally challenging for parents and caregivers. 

Community support provides a network of understanding individuals who can offer empathy, encouragement, and a sense of solidarity during difficult times. 

Communities can provide access to resources and services tailored to the needs of people with disabilities and their families. This includes information about healthcare providers, therapists, support groups, educational programs, and advocacy organizations. 

In addition, families with special needs may face social isolation due to the unique challenges they face. 

Community support can help promote social inclusion by organizing inclusive events, recreational activities, and support groups where families can connect with others who share similar experiences. 

Most importantly, communities can play a critical role in raising awareness about the needs and rights of people with disabilities. 

Community support can empower families to advocate for their children’s rights, access to services and inclusive educational opportunities.

Building A Foundation

Building community requires a solid foundation that begins with natural supports (i.e., family or neighbors). Natural supports can be expanded organically based on the unique values of individuals and their loved ones. 

The process of building community includes identifying our goals and exploring our core values (which may evolve over the years!). 

Knowing our “why,” “values,” “intentions,” or “purpose” will lead us to seek out the right connections, networks, and community resources to meet our family’s needs. 

When thinking about goals, we need to be clear about what we want to accomplish and how connections within specific communities will support that accomplishment. 

It may be best to identify the family’s needs in addition to its strengths. As we think about our own family needs, these gaps are where we may want to seek outside support, including educational and financial support. 

For families with special needs, the priority may be communication and problem solving with others, focusing on lifestyle improvement as well as meaningful behavior change.

Clarity of Accountability

In addition, the components of each community should be clearly defined, with an understanding of core values and shared goals. Identifying who is responsible for what and clearly outlining desired outcomes in each community is important to ensure accountability. 

Find Your Ideal Community

Take a moment to imagine what your ideal community looks like. Keep in mind that it may be different for everyone. For example, a family of faith may visit many local religious organizations (e.g., synagogue, church) to find one that “feels like home. 

Or a child who is interested in gaming may choose to join an online gaming community (one that is deemed safe and age-appropriate, of course), recognizing that there are many online gaming communities. Finding the right fit is a process and may take time. 

It is important to recognize that while there may be gaps in a community, there are many ways to help fill those gaps that can be done organically through the existing community. 

For example, someone in the community may involve an educational advocate or established school liaison, after-school support personnel, county/state/national resources, virtual communities, social media (e.g., Facebook groups). It does not need to be a formal organization.

“To accomplish great things, we must not only act, but also dream; not only plan, but also believe.” 

~Anatole France

Prioritizing Communication

For families with special needs, prioritizing communication among our support members is a must. We need to ensure communication between key members (e.g., vocational providers, ABA providers) as this allows for transparency and support from multiple angles. 

A key component of communication is comprehension, as this is so important in ensuring understanding across supports. Visual supports that can be shared among community members are often helpful, such as a report, concept map, color-coded list of responsibilities, or calendar approach to tasks.

 Keeping all members actively involved and responsive helps ensure that the focus remains intact. Face-to-face interactions are often the most valued, but there are so many other ways to do this in the digital world we live in, such as conference calls or video messaging.

Consistent Support

We also need to ensure that our community and its members are consistently supportive. Building a supportive community can build resilience by providing a sense of belonging, validation, and empowerment. Many community members need to lean on each other in times of need, such as immediate child support. 

Knowing that we are not alone in our journey can help families better manage challenges and build strength in the face of adversity.

The Power of Community

In navigating the complexities of life, we rely on the support and connection of others. This is especially true for special needs families, where the need for community support is not just desired but often essential. 

A community, defined by shared interests and goals, extends beyond geographical boundaries, encompassing diverse networks and resources. 

It serves as a lifeline, offering emotional solace, access to resources, and opportunities for social inclusion. 

However, the definition of community varies for each family, shaped by individual needs, values, and circumstances. 

Building a community starts with identifying natural supports and aligning with like-minded individuals and organizations. 

Effective communication, shared purpose, and mutual accountability are the cornerstones of a resilient community. 

As we envision our ideal community, we must recognize the importance of ongoing communication, collaboration, and consistent support. 

Through collective effort and belief in the power of community, we can navigate challenges and celebrate successes for our children! 

ABOUT AUTHOR:

Holly Downs is the Director of Ethical Compliance at [PBS Corp] (https://www.teampbs.com/). and an instructor at Capella University. She is a certified behavior analyst with over a decade of experience in various populations.

Developing Your Own Network

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This post originally appeared on our May/June 2024 Magazine