Top 10 Things to Do When You Learn Your Child Has a Disability or Special Health Care Need

When your child gets a diagnosis of a disability—or when you simply suspect they may have a special health care need—you have questions. What should you do now? Who do you contact? What’s next? What will allow your child to live the healthiest, happiest life possible?

Our experts believe the following ten tasks will set your family up for long-term success.

1. Get a Formal Diagnosis.
   • Follow up on any newborn screening results.
   • Seek a diagnosis from a physician or geneticist, not only from a therapist.
   • If needed, get a genetic test.
      
2. Seek Services and Resources.
   • Connect with Early Childhood Intervention (ECI)
   • Depending on your child’s age, determine if your local school district offers services and resources
   • Contact nonprofit and charitable organizations in your area that may help
      
3. Place Your Child on the Interest Lists for Medicaid Waivers in Texas.
   • Learn how Medicaid Waivers work in Texas.
   • Don’t worry if your child is eligible today. You can sort that out when they come off the interest lists.
      
4. Take Care of Yourself.
   • Self-care is important. This goes for your entire family. If you aren’t well, you’re unable to provide the very best care for your child.
   • Use this website to connect with groups and events for other parents. Find your tribe.
      
5. Create a Vision for Your Child’s Life.
   • Think in detail about how your child can have a good life. Write it down. What are your hopes and dreams for them now and in the future?
   • Think big. Don’t limit your vision to what’s available now.
      
6. Trust Your Instincts.
   • You’re the best expert on your child’s need, wants, and personality.
   • If something seems wrong, you’re probably right. Seek support and expertise.
      
7. Don’t Be Afraid to Ask Questions.
   • Knowledge is power. The more you know, the better you can care for your child.
   • If someone suggests a therapy, ask what benefits your child will get from that therapy.
   • Write questions down before visiting your medical professionals so you’re sure not to miss anything. If you have questions later, call or email.
      
8. Learn About Programs and Services for People with Disabilities.
   • Visit NaviagteLifeTexas.org whenever you have a question.
   • Search for information on:
     • Supplemental Security Income (SSI)
     • Social Security Disability Insurance (SSDI)
     • Local Intellectual and Developmental Disability Authorities (LIDDAs)
     • The Arc of Texas (and your local Arc)
        
9. Learn About Your Insurance.
   • Call your insurance company and ask them what they cover (and what they don’t). Ask about specific therapist, specialists, timing, etc.
   • Ask what the lifetime cap is (if any).
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10. Learn About the Future.
    • Teach yourself about your child’s disability and what might be coming.
    • Connect with families that have children like yours who are older than your child.
    • Learn about the transition to adulthood.

• Watch the Video: Connect With Other Parents (English)

  Connect With Other Parents (English)

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