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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
Because there are so many rural areas in Texas, there are thousands of parents out there raising children with disabilities or special health care needs in them. Those parents might not be nearby, but they’re probably dealing with the same things as you are – like having the resources to support your child a lot more spread out than someone in a city would.
Living in a rural area, you’ve probably had times when you feel like you’re on your own. This page has tips from other parents of children with disabilities and special health care needs who live in rural areas. We hope their experience will also help you.
It might seem like health care services don’t exist in rural areas. Just finding a doctor that takes your child’s insurance can take some digging. You might not have much choice in specialists or therapists, and the ones you do find might be an hour or more away. Getting health care for your child means spending a lot of time on the road.
Here is some of what we heard from other parents:
“Seek out the nearest large city and drive there for care. Houston is amazing.”
“I’d love to take my daughter to see a pediatrician or specialist in our town. But they either don’t see children or don’t take our insurance. So our pediatrician is 30 minutes away, and my daughter’s specialists are 2.5 to 4 hours away at Texas Children’s Hospital.”
If your child gets Medicaid benefits, you may be able to get help with transportation and transportation costs. See our page on Medicaid medical transportation services to learn more.
Many parents found that a health care champion – a person who could help them find the doctors, therapists, or specialists their child needed – was critical.
“We’re very fortunate because my daughter’s pediatrician knows people and people know her. So, if there are problems, she can make a phone call.”
“We don’t have a therapy clinic near us, so my daughter’s Children with Special Health Care Needs (CSHCN) caseworker helped us find therapists who come to our home, which is much better for my daughter anyway.”
Here are some people you can talk to who might help you find resources for your child:
And the internet is an important tool to learn more about your child’s disability or special health care needs. You can use it to look for doctors, therapists, or university or hospital research groups who study your child’s disability. Some parents have set up online support groups to give and get information and resources in different areas of Texas. You can find some on Facebook, on our Service, Groups, and Events page or through Texas Parent to Parent.
Whether they live in a small town or a big city, every child in Texas has the same right to a free and accessible public education. But that doesn’t mean that all schools have the same options.
In a larger school district, if you are having trouble getting special education services for your child at one school, they might be able to go to a different school with more resources. In a rural area, there is usually just one school around. Some parents have found good ways to make things work with their child’s school.
“I go in with the attitude that they care and want to help.”
“I make sure the teachers and staff understand my child’s disabilities and my expectations in a non-threatening way. But I allow them to use their gifts, talents, and creativity to figure out how to teach my son. And it has worked.”
“I pick my battles. As long as he’s still making progress, my son needs good relationships and cooperation from his teachers far more than he needs the latest and greatest interventions.”
For more ideas, see our page on Ways to Build a Relationship With Your Child’s School. And if you are having trouble getting school services your child needs, our page on Your Child’s Right to a Public Education has ways to get help.
If you are spending days or hours driving your child to therapy and specialist appointments, your child may have to miss a lot of school. That might make it harder for them to keep up and build the supportive relationships they need. If your child has an Individualized Education Program (IEP) or 504 plan, you can ask for it to include how they will make up work.
Some parents in rural areas decide to homeschool their children instead.
“We really didn’t have a choice about homeschooling. Each time we go see my daughter’s specialists, it’s a full day trip. Plus, if my daughter’s dialysis pump has a problem, it can be life-threatening. Unless they were going to give her a full-time aide, I just didn’t want to risk it.”
“My daughter has 2 hours of physical therapy, 2 hours of occupational therapy and 1.5 hours of speech therapy each week. We drive 30 miles each way almost every day. We just couldn’t do that on a school schedule, so we homeschool instead.”
If you’re thinking about homeschooling, here are places to learn more:
No matter where you live, being a parent to a child with a disability or special health care needs can get lonely. But it can be harder in a rural area to find other parents or families who understand what you’re going through.
In some places, you might have a hard time finding safe activities for your child. Maybe the buildings and parks aren’t accessible. Or there aren’t many (or any) programs that support people with disabilities near you.
“It can be really isolating.”
Here are ways some parents fight that isolation for both their children and themselves:
“I included my child and our family in regular community events. My son blogged to a community website about his disabilities, and we have found people are generally kind and helpful when they have this information.”
“We go to the park a lot. There are a lot of homeschoolers in our community, so we talk to a lot of other kids every time we go to the playground.”
“We have one other family we do things with on the weekend. They’re pretty much our community.”
“I feel like most of my social contact comes from talking to the other parents in the waiting room at therapy.”
“Years ago I joined a support group for moms of children with autism. Later, I started a Facebook page titled San Antonio Autism Group even though many of the people on the list live in rural areas instead of San Antonio. When you include the closest city in the name, you get more attention.”
Here are some other tips on how to connect with other parents of children with disabilities in a smaller community:
Even in a state as large as Texas, there are ways to find help and support no matter where you live. We hope it helps to know that other families have shared a similar journey as you.
When you live in a small community, resources are usually limited in a storm or natural disaster. If your child has a medical emergency, the nearest hospital might be far away. Here are some places on our site to help you plan for emergencies: