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Navigate Life Texas: Resources for kids with disabilities and special needs
Navigate Life Texas: Resources for kids with disabilities and special needs
Anyone with a disability has special rights and protections by law. To learn more about these, visit our Legal Rights of People With Disabilities page. This page has stories from a few parents whose child’s rights were violated (i.e., not followed). They wanted to share how they stood up for their child’s rights and what happened next.
There are many, many other stories like these. And every story is different. When a person or program doesn’t treat your child right, you might feel completely overwhelmed. It’s not always easy to find the energy to take on one more thing. We hope these stories let you know you’re not alone and inspire you with some ideas. The parents on this page all thought it was important to stand up and fight for their children’s rights. But they also had to pick their battles and take breaks too. By making their voices heard, they worked to help their children and families and helped pave the way for other families in the future.
When you go to a doctor or hospital, you or a guardian has the right to say no to medication or treatments you don’t want. You can also choose, for example, not to get care by a student nurse or doctor. In this story, a nurse went against a family’s rights. Then, the situation got worse as the parent tried to complain.
“We went to a medical center in town, one that was supposed to be good. My child, who was 7 at the time, has a rare condition and needed some tests. While we were there, a nurse offered her a medication that I didn’t think she needed. In fact, later I learned that it was actually dangerous for her! I kept saying no, and the nurse tried again two more times. One time she tried to ignore me and ask my child for permission. My child also said no. The nurse said she had talked to a doctor about it at lunch and that he thought it was a good idea. What kind of a doctor would prescribe something without seeing a patient or looking at their chart? When I was out of the room, my child was given the medication anyway. I was furious!
When we first checked into the hospital, we got a copy of our rights. The ‘right to refuse medication or treatment’ was listed on there. So I went right to the patient services desk and complained. We expected to have those rights, I told them!
It got even worse. Later, I found out that my child’s intake done by that nurse was really messed up and confusing. I ended our stay as soon as my child was stable. I put in a complaint against the nurse, but nothing happened.
And then I got a call from Child Protective Services. Someone at the hospital called CPS to report that I said no to a medication for my child. A medication that my child’s doctor said was dangerous. I had to prove that I was taking care of my child and her medical needs, prove that she was under the care of a doctor.
I was angry and traumatized by this point. But I drove right down to the Texas Board of Nursing to make another complaint. I learned there that no one with that name was listed as a licensed nurse anywhere in the U.S.! Was that person lying about being a nurse? Was she actually a student? Either way, it was an awful feeling."
In the end, this situation wasn’t fixed, but the parent trusted her gut. She decided to stop treatment at that hospital and never go back there. She decided to stick with doctors and nurses she trusted. And she decided to take a break, but keep fighting this again when she had the energy.
She also had some advice for other parents:
“For now, I need to focus on my child’s needs first. It’s overwhelming to hit dead ends, especially when your child needs the care. But write everything down, maybe take photos. There are always new things to try – when you’re ready.”
The law says that health and health care information must be kept private. It can only be shared with a patient or their legal guardian. The patient or parent must sign special paperwork for anyone else to have this information. But, in this story, therapists were talking to a parent about her child’s treatment in an open area in front of other people. Like the last story, this parent is still fighting to be heard and to stand up for her child’s rights.
“My son is a young adult with developmental delays. I searched for the right speech therapist for over 10 years. I thought we finally found a good one. It was hard for me to take my son to all of his appointments, but I did it.
We started sessions in the summer. Then one day, just a few months later, his regular therapist and another one came out into the waiting room. They started to tell me loudly that my son wasn’t making progress like he should. They said he wasn’t able to learn. And this was all said right in front of my son for him and anyone else to hear. He knew they were talking about him, he told me later. The whole thing was rude, unprofessional, embarrassing, and upsetting."
There are many things wrong with what happened. First, this conversation happened in a public area of the clinic where anyone could walk in. Second, all of this happened where her son could hear it. The people who were supposed to be helping him were talking about him as if he wasn’t there. Third, the parent did not know this meeting was going to happen. The therapists were sharing sensitive and upsetting information. She had no time to prepare. And fourth, she only knew one of the therapists talking to her. This parent also said, “no one ever told me when we started therapy what progress was supposed to look like.” So she had no idea they thought he was off track.
To speak up for her child’s rights, this parent wrote a letter to the management of the clinic. She also talked to a former staff member as well as to other families. She learned that this kind of thing happened all the time there. Knowing that she was helping other families too gave her strength to keep fighting. She also filed a complaint with the Texas Attorney General’s Office and was told her complaint was on file.
After months of waiting, she decided to keep calling and writing to the agency that oversees regulations until a response was received. Mom plans to file a complaint with the Americans with Disabilities Act (ADA) national office.
The family also left that clinic. “We ended up finding a better option for services! I want other parents to know that they can leave. They don’t have to put up with poor care. They have other options, even if they have to travel.”
Her advice to other parents is:
“Never give up! Know that you deserve better. It’s hard to keep up the fight, to force people to do their jobs right. Even if you feel alone and it drains you, you’re not the only one. Share your story. These violations might be the tip of the iceberg. Don’t let this happen to someone else. Your actions can have a big ripple effect.”
In this last story, a parent worked to get her child the rights he deserved at school. She learned along the way that her child’s behavior was related to a diagnosis. She also knew that, if she could get him an assessment, she might be able to get him the special education support he needed.
“I decided to send my child to a charter school in middle school. I was excited and thought it would be a better place for him. He had had some behavior problems and an ADHD diagnosis. The problems didn’t really get better at the charter school. At one point it got out of control and he had to go to a [psychiatric] hospital. I really wanted him tested by the school. But they kept saying no.
Parents aren’t always aware of their rights. Charter schools are in the public school system and have to follow the same laws. I had to stand up for my child’s rights with the school district for 2 or 3 years. At first, I was new to this. I didn’t know the ropes. I did everything I could. I went to workshops, made calls, and took my son to community programs to learn how to help him. And I started to talk to program staff and community leaders, even to school district leaders. Slowly, as more people got involved and wrote letters, the school started to listen.
But then, even after they agreed to an assessment, they didn’t do it. They still tried to kick him out as a ‘bad kid.’ I spoke up loudly for him to anyone who would listen or help. I got other parents involved too. Along the way, I found even more parents in the same situation. Finally, I’d had enough. I decided to reach out to the lawyers at Disability Rights Texas and let the chips fall where they may.
My advice to other parents would be to be persistent. Keep fighting, but be patient too. Follow your parental instincts. Learn about your rights. Write down everything. Don’t be afraid to get a second opinion and ask for help. And remember this isn’t just for you. It can give a voice to past parents and might make changes for future parents. Also, through it all, be willing to work with the school and put you best foot forward. Your child is still going there. I checked in with my child along the way to make sure he was ok. That he understood what we were doing. And I listened to him.
It really take a village. We couldn’t have done it without so many people supporting us. And now I try to support other families too with what I’ve learned.”