As parents of children with disabilities, life can often feel like a roller-coaster—full of highs, lows, and unexpected turns. While we’ve been very fortunate that our entire family has embraced our son, and that we live in a neighborhood that has gone above and beyond to include L in all activities, there have still been moments when we’ve felt very alone.
Over time, we realized that we couldn’t do this on our own—and that we needed to expand our support network to include a wide range of people who could support not only us as parents but also L as he grew into adulthood and independence.
What Is a “Circle of Care”?
A “Circle of Care” is a framework of support built around an individual with a disability. I first learned about this concept from attorney-parent-advocate Annette Hines, when I participated in her Advocacy and Planning Masterclass. In that program, one of the first exercises was to create our personal “Circle of Care.”
Annette defines a “Circle of Care” as “a special team of people who you know you can count on for support and resources—or to just give you a break when you need to get away for a few hours.” Why Special Needs Families Need a Circle of Care™
These are the people who show up, who care, and who help your loved one live a full and supported life.
Who Is Part of the “Circle of Care”?
Anyone who provides support to the person with a disability can be part of the “Circle of Care”. These are people who know your loved one, care about them, and are willing to play an active role in helping them reach their goals.
In Annette’s Masterclass, she encourages participants to identify people who can support different areas of life such as:
- Public benefits and finances
- Home life and daily living
- Education or employment
- Healthcare and wellness
And according to Special Needs Family Services, forming a “Circle of Care” is about gathering support for “each area of your disabled person’s life.” specialneedsfamilyservices.com
When your person completes their Person-Centered Plan, each area where they may need support should include people beyond the immediate family. This not only builds a wider network of support, but also helps prepare for the future—when parents or guardians may no longer be the primary decision-makers.
Just as importantly, it allows parents to be parents again—not case-managers, job coaches, and care coordinators all at once.
How to Find People for the “Circle of Care”
This can sometimes be the hardest part. Depending on your loved one’s needs, you may need to include people with specialized skills or experience with specific conditions. That’s why it’s so valuable to build relationships early on with your child’s school team and medical providers—they often become some of the first members of the Circle.
When your person ages out of school, those familiar supports often change or disappear. We were fortunate to maintain relationships with several key people in L’s life after graduation by keeping in touch—even hiring a few as his after-school PCA staff.
It’s also helpful to connect with transition programs and agencies like Pre-ETS, as well as therapists who can help identify adult providers. For example, L had a private speech therapist when he was younger. As he approached adulthood, I reached out to see if her practice worked with adults—and they did! Because improving social communication was part of his ISP goals, we were able to use some of his funding to continue those sessions.
Special Needs Family Services also emphasizes that support providers become part of your “Circle of Care”, because they can serve as “resources for both knowledge and support” beyond just direct caregiving. specialneedsfamilyservices.com
Building Your Own Circle
Your “Circle of Care” will look different from anyone else’s—and that’s okay. It might include family members, neighbors, teachers, job coaches, healthcare providers, friends, and community members who truly “get” your loved one.
Start small. Add people as relationships grow. And remember—this circle isn’t just for your child; it’s for you too. None of us are meant to do this alone.
Call to Action
Take some time this week to sit down and map out your “Circle of Care”.
- Who’s already in it?
- Where are the gaps?
- Who might you want to reach out to or reconnect with?
In our upcoming posts, I am going to be taking a deep dive into 3 person-centered planning models. As you are reading these future posts, keep in the back of your mind who can be a part of your person’s “circle of care” in the various areas of their life.
Creating this framework early can provide peace of mind—and ensure your loved one has the support, care, and community they deserve throughout their life.
Until next time,
Cheryl
#Life Without a Filter 