A Powerful Voice
Supports for adults with developmental disabilities vary widely. Many different people have a seat at the table. Caregivers, guardians, doctors, therapists, and other professionals all bring valuable knowledge and insight. But when so many people are involved, the table can become crowded, and those voices can be pretty loud.
One voice that we should never silence, and even amplify where possible, is the voice of the person receiving support. That may sound obvious but putting it into practice is often more difficult than we realize. People with developmental disabilities sometimes face barriers that make it harder to express their thoughts, preferences, and goals. The systems and structures that help ensure quality services are important, but they can sometimes shift the focus away from the person they are meant to support. At times, a person’s goals or ideas may seem unrealistic or too ambitious, and it can be easy to dismiss them before giving them the thoughtful consideration they deserve.
One young woman took her voice, or as she puts it her “thinking skills”, to the Lake of the Ozarks, where she joined self-advocates from across the state to share how she uses secure video to introduce herself to new staff, communicate what matters most to her, and keep her voice at the center of her support.
Anastasia lives in an ISL, has been employed for 15 years, family is very important to her, her mom has a “crazy dog” that Anastasia loves, and she is an advocate. I know this about Anastasia because she was able to share it to her team through a secure “About Me Video”. And it is this video that Anastasia shared with self-advocates at the end of August. The Real Voices, Real Choices conference is an annual event that brings together self-advocates from all corners of Missouri to network and learn about self-advocacy and independence and this year, Anastasia was a presenter. Her presentation, titled “The Person Behind the Plan”, made the case for using video to empower individuals receiving services to share what is important to them with their team in a way that is direct; not relying solely on the Person-Centered Support Plan and other more traditional methods. Using video to supplement the detailed information provided by a support plan allows the person receiving support to decide what is important to share while also giving support staff the opportunity to get a glimpse into some of what makes that person unique!
Anastasia has been an advocate for several years and has attended the conference several times. Last year, directly following the event, Anastasia decided she wanted to grow her hair out. When asked what inspired her to do so, she said, “One of the girls had long hair and that gave me inspiration to grow it long”. She was also excited to present at the conference, and when asked, said “Yes, I am. I’m taking my thinking skills to a whole new level!”. By sharing how she uses secure video to tell staff what is important to her, she reminds us that the person receiving support is the expert on their own life.
Anastasia, like many of our attendees, looks forward to Real Voices, Real Choices each year. Most of all, she is “hoping her sister can see how she can speak up for herself.” We are so proud of Anastasia. We want her story to encourage more people to share what matters to them, challenge themselves, and find the confidence to use their voice. We believe her story also offers an important reminder to those of us who are part of a support team: no matter how many people are gathered around the table, the most important voice belongs to the person at its center. Our role is not to replace that voice, but to help ensure it is heard.
Authored by:
Marcus Sunday, Family Advocate