What makes a parent a leader within the disability community? What makes a leader anywhere? Usually it is a passion, a cause, or the need to right a wrong. It takes courage to step out and change things or say out loud what no one wants to hear.
When the cause that moves you to act is about a child, you can easily connect with other parents in the same situation – like in the waiting room at therapy or a specialist’s office, using online forums, or finding parent groups. And those parents know other parents. Before you know it, you have a group of passionate parents who want to work with you to make changes. Most of the major laws written concerning children with disabilities or special health-care needs started with parents wanting to change something that wasn’t working for their children.
The IDEA (Individuals with Disabilities Education Act) came about after parents worked in their own states and had small victories with their school districts; the Medicaid Waivers (Katy Beckett Waiver) came about because a mom in Iowa asked why she couldn’t take her child home after 2 years in the hospital; the ADA (Americans with Disabilities Act) came about because adults with disabilities kept asking why they couldn’t access public buildings. Often, these movements started with 1 parent or person with a disability finding another one, who then found 3 more until, together, they sparked a movement that changed how things were being done in education, health care, and day-to-day life.
So, you have a passion and want to make changes. Where do you start? You can: organize a parent group around a certain issue; join advisory committees, councils or boards of directors; or write letters and emails or visit with state directors or legislators all year round, not just during biannual sessions. My suggestion to you is to start with your passion – find that one thing that gets you excited, the one thing that you wish you could be paid to do. It isn’t that hard to get going if you’re working on something you really want to do and care deeply about.
For me, my passion was family support. The first time I saw a parent come into a support group in tears and leave feeling like they could face the world again, I was hooked. I started volunteering and got on a board of directors for a support group for parents of preemies. Then I went to The Arc of Texas and ran support groups and worked in the office. Then they started paying me. And, finally, a group of us founded Texas Parent to Parent (TxP2P) in order to connect parents across the state of Texas.
I’m always willing to help parents start new groups. I’d like to see a parent group in every Texas county so that when a parent gets a diagnosis for their child, they don’t have to go far to find support, information, and education. They aren’t searching for years to find another parent like them. They can get the kind of emotional support that makes a big difference, strengthening them for today's battles and helping them become one of tomorrow’s parent leaders.
For more information about Texas Parent to Parent, visit www.TxP2P.org or call us at 512-458-8600.
After getting the life-changing news that we were going to be parents, Rick and I had to face the challenges of parenting a child with profound healthcare needs.
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