If you are raising a child with a disability or special health care needs, chances are you have been advocating for them for a long time. Even if you don’t call it advocacy. This page is about stepping into advocacy to improve rules, laws, systems and funding for children and families like yours. That means using your voice in a smart and powerful way to push for a helpful change.
If you’re interested in using your experiences and ideas for systems change, this page can get you started and help ease your fears. There are people and groups that can help you learn to advocate and teach you when and how to speak up in your community, state or country.
Advocacy happens in your everyday life when you firmly ask for what your child or family needs. It’s something you probably do all the time by talking to your child’s teachers, therapists or doctors. Or maybe even to a boss, school principal or family member. You might be using advocacy in the special education process to get your child the right supports, or in the community when someone misunderstands your child’s behavior.
Advocacy to change laws, policies and systems is even bigger. It means joining with others to be a voice for your child and for other families like yours to work toward a specific change that will help many people. Every type of advocacy usually involves speaking up strongly, and often more than once to different people about the same issue. You’ll be advocating with your child and alongside other people with disabilities.
Maybe you have information no one else has. Maybe a rule or a law really didn’t work for your child or others with disabilities or special health care needs. Maybe your child had an experience you know could have been better. Maybe you are passionate about a problem and have ideas on how to solve it.
To advocate for systems change:
In each of these places, before you try to advocate, it’s important to learn how and when a group makes decisions, and when it hears from families or the community for public comment. That way, you know how and when to try to make a difference.
Next, you can learn about the rules, policies or laws already in place, and how a new local, state or federal law might change to fix your issue. Here is a web page on how a bill becomes a law for the United States and an article on how a bill becomes a law in Texas. The process can look a little or a lot different in a local community.
Know that a new law is not the only way to make a change. It takes a year or more of planning before a new bill is written. Many of the thousands of bills that get filed in Texas each legislative session never become laws. Some do come up again another year, maybe with changes. Plan ahead and think of different ways you can make a difference.
It can be easier to advocate for a change with a state agency rule or at the local community level. When state agencies draft rules, they ask for public comment too. For example, agency advisory councils at Texas Health and Human Services (HHSC) or Texas Education Agency (TEA) and their task forces on services for children with disabilities often have family member roles, so they hear from caregivers.
There are ways to dip a toe into advocacy and see what it’s all about before diving in all the way. Everyone can give different amounts of time, energy and talents. There are jobs for everyone: telling your story, speaking in hearings, web page design, media alerts, talking to a camera or leading the group. Being part of advocacy can make you feel powerful, especially when you have a win.
Your advocacy might look like:
One very important way to begin is to meet with an elected official in your community. The Texas Tribune has a web page to find out who those people are and more about what they do. They have offices in local communities, not just in Austin. You can talk to them at a community event or set a time to meet them or their staff in their office. They can get to know your child and family and what’s important to you. Their job is to help. When they learn about a problem or big roadblock for children with disabilities and their families, they might step in to help as part of what’s called “constituent services.”
Also, there is power in numbers. Connect with other parents and advocacy groups. For example, Texas Parent to Parent teaches parents and caregivers of children with disabilities, mental health conditions and special health care needs how to advocate. Texas Parent to Parent also helps parents and caregivers organize around their issue to work for a change of their choice.
Getting ready to advocate might look like collecting your thoughts and ideas with a friend. Perhaps you could watch a meeting or go to a practice meeting or mock hearing among friendly faces while trying out your speech. You might go to a meeting like the HHSC Policy Council for Children and Families and write a public comment.
Whichever way you get involved, having a friendly face along with you, cheering you on silently from the sidelines, can always help calm your nerves and give you much-needed support.
There are times as an advocate when it may be important to share personal experiences. You may be asked about your child or family’s experiences at a public meeting. Be sure you’re comfortable with what you will share, and that your child will be ok with what you share too. One parent told us:
“Before you say something personal, stop and think. Picture 10 to 20 years from now, when the statement is out there on the internet. What would you think about it then? What would your child think about it then? If it’s discomfort, say something different.”
For example, you could say, “I have a relative who needs…” or “I know someone who has been through…”or “Children with disabilities should have…” instead of naming your child. If you’re put on the spot with a question, you can just say, “I will follow up with that.” Then you can email or reach out another day, so you have more time to decide how to handle it.
We have collected a few advocacy success stories from Texas Parent to Parent to show you what’s possible.
One Texas mother of five-year-old twins with autism and complex health care needs was not able to work. She faced losing her Supplemental Security Income or SSI because a proposed new rule would require people getting SSI to work. Texas Parent to Parent looked for a parent advocate affected by the change and introduced her to Congressman Lloyd Doggett in Washington, D.C. He told her story to his Committee to “kill” or stop the proposed SSI policy. Because of her willingness to share, they were successful!
When a child has Intractable Epilepsy, they have seizures that can last 1-9 hours and involve brain damage. Families often try treatment after treatment to find one that will work to help their child. Each treatment eventually fails. One Texas family wanted to be able to try cannabidiol or CBD oil for their child, which was legal and prescribed in Colorado. They were ready to fight for a change in the law even though they were told it would be a long shot.
This parent came to the Capitol in Austin weekly for almost a year during the legislative session. Texas Parent to Parent helped her plan, schedule 10 visits every Wednesday, find her way around the Capitol and find organizations to help her cause. They also helped out with her child while she did all of this. The group grew to 25 families plus the Epilepsy Foundation. After 400 visits, including meeting with the Governor’s office, Texas’ first medical cannabis bill passed. 200 members of the national media were there to witness it being signed by the Governor.
People who get services in the Deaf Blind with Multiple Disabilities (DBMD) Medicaid waiver program must be deaf-blind and have one or more other disability. Their highly specialized sight-and-sound interpreters are called interveners. HHSC identified a problem where interveners in the DBMD program were being paid just 25% of what they should have been making. The parent organization Deaf-Blind Multihandicapped Association of Texas (DBMAT), with help from Texas Parent to Parent, played a big role in creating four bills to increase their wages. One passed, and it only took one! Today, DBMAT parents are using all of the advocacy skills they developed to work for their next success.
It can be both exciting and challenging to use your voice in a powerful way to advocate for your child and family. With some help and support, you can try it out, or dive all the way in!
Here is a list of some organizations, task forces and groups in Texas that advocate for disability issues. Some groups are focused on a certain disability and others are more general. Often, groups and families work together on an issue.