Colorado

• Email our Colorado Genetic Navigator Jamie at coloradogenetic@gmail.com
• Learn more about Jamie

• Find a Genetics Clinic in Colorado
• If you live in Colorado or are moving to Colorado and need access to genetics services,
  • Children’s Hospital Colorado
    • Anschutz Medical Campus
      13123 East 16thAve.
      Aurora, CO 80045
    • Main number 800-624-6553
    • Genetics and Inherited Metabolic Diseases 303-724-2370
    • Special Care Clinic 720-777-6739
    • Developmental Pediatrics 720-777-6630
• And connect with:
  • HCP (formerly called Health Care Program for Children With Special Needs)
• Colorado Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Village Map
  • For a visual representation of services in Colorado

Family & Parent Support

Family to Family Health Information Center – Colorado Family Voices

• 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 special needs
• Family Organizations in Colorado
  • El Grupo VIDA (Espanol)
  • Colorado Resource Directory
  • Colorado Family Voices Resources
  • National Family Voices Resources
  • Peak Parent Center
  • Parent to Parent of Colorado
  • Colorado Cross-Disability Coalition

Newborn Screening Support

Colorado Newborn Screening Program

• CDPHE NBS Laboratory (general questions or to obtain copy of NBS results)
  • Phone number: 303-692-3670
  • Contact Information for Specialists following an abnormal newborn screening
• Contact this group if/when:
  • you need NBS results, your doctor has told you your child has a positive newborn screen and you are having trouble seeing a specialist/follow-up, to get lab records for proof of condition when applying for SSI and Medicaid, for family to have all medical records for continuity of continued medical care as doctors and clinics often want labs and medical records before seeing a child especially if the family moves to another state and has to reestablish care.

Early Childhood Support

Community Centered Boards

• Contact your Community Centered Board if/when:
  • your child is not meeting developmental milestones and needs an evaluation or early childhood support

Health Care Support

HCP (formerly Health Care Program for Children With Special Needs)

• A program for children with special healthcare needs at the Colorado Department of Public Health and Environment
  • Phone Number: 303-692-2370
• Contact this group if/when:
  • you need help accessing programs for special needs children in Colorado

Regional Accountable Entity (RAE)

• Contact this group if/when:
  • you are in need of a public health nurses in each Colorado County.  This is the way for both families, but also professionals to refer to public health and get access to services. Providers can contact the nurses and place a referral, but families can also do a direct contact.  The nurse will then do an intake.
• Formally known as the Regional Care Collaborative Organization (RCCO)
  • RCCO Regions, Counties Served, and Contact info
  • RCCO Contacts for Providers and Stakeholders

Medical Insurance and Medicaid Support

Colorado Medicaid

• Contact this group if/when:
  • you need help accessing programs for special needs children in Colorado
• County Health and Human Services links
• Medicaid Applications
• Case management agencies (Single Entry Point SEP)

Waiver Support

Colorado Medicaid Waivers

• Contact this group if/when:
  • you need help finding out if you qualify for a waiver, or to apply for a waiver for a loved one
• Choosing an HCBS Waiver for Children
• Choosing an HCBS Waiver for Adults
• Colorado Programs for Children
• HCP
• Waiver chart (Sept 2019)
  • The waiver chart listed above from the Colorado Department of Public health website is not all inclusive as it only includes waivers for children up to 18 years old and does not include grants for children or waivers for 18+.
  • Below is a link that contains grants but it is from one particular community centered board so it also contains waivers that are specific to the local area it serves and not provided by the whole state. Grants are for the children with special health care needs that don’t qualify for waivers because they are not medically fragile enough. They are also given to the medically fragile entering into the system before they have gone through the whole process of qualifying for a waiver.
  • Imagine Colorado Funding Programs

Education Support

PEAK Parent Center – Parent Training and Information (PTI) Center Project

• Contact this group if/when:
  • you would like support navigating Individual Education Plans (IEPs) or training to advocate for children in your schools and community

Other Resources

Mile High United Way 211

• Contact this group if/when: 
  • Colorado 2-1-1 is a simple and easy-to-remember number and web site that people can access when they need help or want to give help. Often times, people don’t know where to go for help… or that help is available. 211 can help.

• Where is Bear is a fun book to enjoy with your child while checking that they meet the milestones of a typical two-year-old.
• Download a PDF of “Where’s Bear”
• A developmental delay or missing milestones can sometimes be a “red flag” for a genetic condition.
• View other developmental books and resources  for all ages from the CDC.
• 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.
• In addition, MSRGN has developed a Developmental Delay Algorithm that you can share with your child’s doctor.

• Maria (Co-Lead)
• Erica (Co-Lead)
• Jesús
• Caitlin
• Elisa
• Rene
• Jamie