COVID-19 Resources for Families with Genetic Conditions in TEXAS

COVID-19 Recursos en TEXAS para los afectados por enfermedades genéticas (en Espanol)

Find a Genetics Clinic in Texas

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.

Family to Family Health Information Center -Texas Parent to Parent

Information is provided in English and Spanish.

Phone number: 866-896-6001

local: 512-458-8600

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.

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

Helpline: 1-800-252-8023
In Austin: 512-776-7355
Fax: 512-776-7565
Email: cshcn@hhsc.state.tx.us

Contact this group if/when:  you need help with these services for children with special health care needs and people of any age with cystic fibrosis.


Texas Title V 

Title V works to strengthen community-based services to improve systems of care for children and youth with special health care needs (CYSHCN). Title V 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.


Texas Medicaid 

CHIP and Children’s Medicaid (from the Your Texas Benefits website, a good resource for families)

Texas Medicaid for Children with Disabilities (Navigate Life TX link)

Contact this group if/when: need medical insurance coverage for your child with special health care needs.


Texas Medicaid Waivers 

Medicaid Waiver Programs for Children with Disabilities (Navigate Life TX link)

Waiver comparison chart on HHSC’s website

Contact this group if/when: info needed  you need help finding out if you qualify for a waiver.


Navigate Life Texas  EnglishEspañol

Navigate Life Texas is an excellent resource for families that have a child with disabilities and special health care needs. It offers help and information on:

  • Diagnosis
  • Financial Help
  • Family Support
  • Insurance
  • Education and school
  • Transition to adulthood
  • Much more…

You can also find videos and articles of families talking about their personal stories. All of this is available in English and Spanish.


Other Helpful Texas Resources:

Texas State Team Parent Genetic Resources Sheet

Texas State Team Provider/Clinic Genetic Resources Sheet

Baby’s First Test Texas Info on Newborn Screening

Texas Autism Society

Early Childhood Intervention Archived Seminars on Genetics

These webinars are possible thanks to funding from the UT Texas Center for Disability Studies and presented jointly with Baylor College of Medicine and Texas Children’s Hospital. The series is presented with support by the Department of State Health Services and collaboration with Early Childhood Intervention and Health and Human Services.