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The Importance of Advocacy

5-advocacy-Jeanette-Matt2Having a family member with a disability, especially a child, is a lifelong journey of caring and advocating for their best interests. But sometimes parents don’t always know where to turn or what tools are at their disposal to help their child.

Jeanette Wilhelm, quality management coordinator and advocate at Monarch, has experienced this first hand.

When she first found out her son Matt was not meeting developmental milestones and was cognitively impaired, she said the feeling of loneliness was overwhelming. Faced with navigating doctors’ “professional opinions,” appointments and referrals, the task of caring for Matt soon became almost unmanageable and isolating.

“In the midst of this chaos, I contacted The Arc and found a resource, a person who was on my side,” Wilhelm explained. She was placed with an advocate and through their support and guidance learned how to navigate school and government systems to best identify the most appropriate resources for her son. And, for the first time, she had someone she could voice her concerns to and would help in decision making for Matt’s well-being.

Because of her experiences with advocacy and the many ways it helped her, she started working part time as a parent advocate at Monarch and met CEO Dr. Peggy Terhune.
Both women believed strongly in the power of advocacy and Terhune began accompanying Wilhelm to school meetings to help her figure out the best options for Matt’s education.

“As parents, we are so emotionally involved with our child, it is often difficult to face the struggles or admit that our child needs assistance, especially when the feat seems impossible. The advocate is the champion who reminds everyone in the room that it is not disabilities—and it is the right thing to do,” Wilhelm explained.

Which is why she believes the most important part of advocacy is giving parents encouragement and resources so that they have the best tools to, in turn, advocate for their child. This is why advocacy has become her passion.

“I believe that it is important to protect the rights of people with disabilities. My experiences caused me to want to assist and support other families. I want my voice to be the hope, support and encouragement for people with disabilities who receive support as well as for their families. After all, someone share their passion and gift of advocacy with me.”

See a short video interview with Wilhelm here:

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