When you first learn that your child may have a developmental or intellectual disability, it’s normal to feel uncertain about what comes next. You may be asking yourself, “Where do I even start?” To help you get started, we’ve created a checklist of practical steps and resources you can use as a guide to help you know what to focus on when you get started and important resources and critical milestones.
Take a deep breath — you are not alone. There are caring people, programs, and resources ready to walk this journey with you. Here’s a simple roadmap to help you take those first important steps.
Start with Early Childhood Intervention (ECI)
In Texas, Early Childhood Intervention (ECI) is the place to begin if your child is under age three and has a developmental delay or disability. ECI provides therapy and family-centered support right in your home or community — and the best part is, anyone can make a referral, including you as a parent.
If your child qualifies, ECI will help create a personalized plan for speech, occupational, or physical therapy and other supports. When your child turns three, they’ll transition into Early Childhood Special Education (ECSE) through your local school district. The ECI team helps make that transition smooth by holding a conference at least 90 days before your child’s third birthday.
Tip: You can find your local ECI program through NavigateLifeTexas.org.
Look Into Health Coverage and Benefits
Next, check your child’s eligibility for Medicaid, STAR Kids, or other Texas health programs. These programs can help pay for therapies, medical care, and other essential supports.
This is also a good time to start keeping your child’s records organized — both digitally and in paper folders if that works better for you. You’ll collect lots of evaluations, reports, and forms, so having them in one place makes everything easier later.
And remember: you are your child’s best advocate. No one knows them like you do. Trust your instincts, ask questions, and don’t be afraid to seek a second opinion.
Learn About Assessments and Early Services
Early identification makes a big difference. There are several types of assessments and evaluations that can help you understand your child’s needs and strengths:
- Developmental Screenings – Quick checkups (often done at the doctor’s office) to see if your child is meeting milestones in movement, speech, and learning.
- Diagnostic Evaluations – More in-depth tests by specialists to help identify a specific disability or delay.
- Functional or Behavioral Assessments – These help figure out the reason behind certain behaviors and guide positive behavior support plans.
If you need childcare, look for an early learning program that understands how to meet the needs of children with developmental differences.
Get on the Texas Waiver Lists — Now!
This one’s really important and unfortunately people frequently put this step on the back burner. Texas has long waiting lists for certain Medicaid waiver programs that can provide support later, such as in-home services or respite care. You can place your child on the list even as a baby, and eligibility is determined later — some programs are based on the child’s income, not yours.
Don’t wait! You can learn more about waiver programs at NavigateLifeTexas.org.
Dream Big — Create a Vision for Your Child’s Future
It’s easy to get caught up in appointments and paperwork, but take a moment to think about your long-term hopes for your child. What do you want their life to look like? What brings them joy? What kind of support will help them thrive?
Your dreams and goals will help shape the care plans and services your family chooses along the way.
Don’t Forget About You
Caring for a child with a disability can be joyful — but also challenging at times. Make sure to take care of yourself too. Connect with local parent groups, talk with families who have been where you are, and remember that asking for help is a sign of strength, not weakness.
You’ll find wonderful support networks right here in San Antonio.
Explore Financial Supports
Visit NavigateLifeTexas.org to learn more about Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). These programs can help families with children who have disabilities.
Find Local Resources and Support
There are many nonprofits and community programs ready to help you navigate services, therapies, and case management. A great place to start is SACRD.org — your local, online directory for programs and organizations that support families and children with disabilities.
You can also connect with local agencies that provide case managers who help families coordinate care and access benefits.
Think Ahead: Legal and Financial Planning
As your child grows, you’ll want to start planning for the future. This could include exploring guardianship options, setting up a trust, or outlining care preferences. It might feel early, but planning now helps protect your child later.
Open a Texas ABLE Account
The Texas ABLE program (Achieving a Better Life Experience) helps families save for their child’s future without affecting eligibility for government programs. Funds can be used for things like education, housing, therapy, or transportation.
You can open an ABLE account at any age — as long as the disability began before age 26. Learn more at TexasABLE.org.
Keep Moving
The beginning of this journey can feel overwhelming, but each step you take helps build a stronger future for your child — and for you. You don’t have to have all the answers today. Start with one phone call, one form, or one conversation. Little by little, you’ll find the people and programs who will walk beside you.
