Texas

• Email our Texas Genetic Navigator Lourdes at texasgenetic@gmail.com
• Learn more about Lourdes

• Find a Genetics Clinic in Texas

Family & Parent Support

Family to Family Health Information Center – Texas Parent to Parent

• Contact this group if/when: 
  • you need family support, you are having difficulty navigating the system, you just moved to the state with you child with disabilities, chronic illness or other special health care needs. Texas Parent to Parent supports families of children of any age and provides trainings and conferences across the state. They can also refer them to organizations and resources in their own communities.
• Information is provided in English and Spanish
• Contact
  • Phone: 866-896-6001
  • Local: 512-458-8600

Navigate Life Texas

• Contact this group if/when:
  • you have a child with disabilities and special health care needs, and would like help and information regarding:
    • Diagnosis
    • Financial Help
    • Family Support
    • Insurance
    • Education and school
    • Transition to adulthood
    • Much more…
  • English Navigate Life Webpage
  • Spanish Navigate Life Webpage
  • You can also find videos and articles of families talking about their personal stories. All of this is available in English and Spanish.

Newborn Screening Support

Texas State Newborn Screening Lab

• Contact this group if/when: 
  • you need newborn screening results

Newborn Screening Clinical Care Coordination

• Contact this group if/when:
  • your doctor has told you your child has a positive newborn screen and you are having trouble seeing a specialist/follow-up.

Early Childhood Support

Texas Early Childhood Intervention Services

• Contact this group if/when: 
  • you need assistance completing a referral or finding out if your child/a child you are providing services to who is between birth to three years of age; and has a significant developmental delay or established medical condition; is eligible for IDEA Part C early intervention services.

Health Care Benefit

Texas Children with Special Health Care Needs (CSHCN) Services Program

• Contact this group if/when: 
  • The Children with Special Health Care Needs Services Program helps children 20 and younger who have special health care needs and people with cystic fibrosis of any age improve their health, well-being and quality of life.Focused on family-centered and community-based strategies, the program ensures families get services that honor and respect their cultural beliefs, traditions and values.All services must be medically necessary. These include:
    • Medical
    • Mental health
    • Dental
    • Vision
    • Special medical equipment and supplies
    • Family support services
    • Community services
    • Case management

Maternal and Child Health/Children with Special Health Needs

• This public health program works to strengthen community-based services to improve systems of care for children and youth with special health care needs (CYSHCN). This program contracts with community-based organizations throughout the state.
• Contact this group if/when: 
  • you need a referral to a community-based organization who provide case management and family support and community resources for children and youth with special health care needs.

Medical Insurance and Medicaid Support

Texas Medicaid

• Contact this group if/when: info needed 
  • you need medical insurance coverage for your child with special health care needs.
  • Children’s Health Insurance Program (CHIP) and Children’s Medicaid
  • Your Texas Benefits
    • The site to apply for multiple Medicaid funded services

Waiver Support

Texas Medicaid Waivers

• Use these resources if/when:
  • you need help finding out if you qualify for a waiver.
    • Texas Health and Human Services Commission’s Waiver comparison chart
  • To learn more about TX Medicaid Waivers at this Navigate Life TX website

Education Support

Partners Resource Network

• Use these resources if/when:
  • you would like to know how a child can become eligible for special education and related services in school.

Center for Parent Information & Resources (Texas PTIs)

• Visit this webpage if/when:
  • You would like contact information for the Texas (and other state-based) parent information organizations, including the Texas Parent Training and Information Center(s)

Texas Project First

• Contact this group for:
  • Accurate and consistent information for parents and families of students with disabilities

Special Education Information Center (SPEDTEX)

• Contact this group for:
  • Information and resources to understand your child’s disability, your rights and responsibilities under the Individuals with Disabilities Education (IDEA) Act, and receive support on the development and delivery of services to children with disabilities in Texas.

• A developmental delay or missing milestones can sometimes be a “red flag” for a genetic condition.
• If you have concerns about your child’s development, please talk to your child’s doctor. You can find more resources to help you do that, here.

• MSRGN created a developmental delay algorithm that provides guidance for primary care clinicians in determining the cause of developmental delay, including the initial genetic evaluation. If you have concerns about your child’s development you can share this algorithm with your child’s doctor:
• View the Algorithm (for Healthcare Professionals)
• Learn more about the Algorithm

• Texas Health and Human Services: ECI Training and Technical Assistance Webinars on the topic of Genetics

• Melissa
• Blake
• Farah
• Debra (Co-Lead)
• Ivy
• Josephine
• Laura B.  (Co-Lead)
• Leslie
• Lourdes
• Maureen