Colorado

Family Empowerment Representatives

Family Empowerment Representatives are volunteers who provide emotional support, information and resources to families affected by Rett syndrome. Contacting them should be your first step.

National Family Empowerment Representative

Samantha Brant – Family & Community Engagement Manager, Rettsyndrome.org
sbrant@rettsyndrome.org  1-913-221-8157

Family Empowerment Representative

Judi Dings, volunteer Family Empowerment Representative, Colorado Springs  jtindin@aol.com 1-505-417-1605

Treatment and Research Centers

Your child may be able to participate in studies and trials to advance treatment and knowledge of Rett syndrome. There are clinics specializing in Rett syndrome that can help you provide Rett-specific care for your child.

Clinical Trials

Rett syndrome clinical trials are available at various stages in the process. Please visit our Clinical Trial page for current enrollment status.

Natural History Study

University of Colorado/ Children’s Hospital Colorado
Visit University of Colorado/ Children’s Hospital Colorado Website
1-720-777-5514
At the Neuroscience Institute, doctors treat a wide variety of brain, spinal cord and nervous system conditions in children and adolescents.  At Children’s Hospital Colorado, your child’s doctors will speak to you about your child’s condition in a way you can understand, review all treatment options, and explain what happens before, during and after each treatment.  For information on the NHS study opportunity, email Gina VanderVeen at Gina.VanderVeen@childrenscolorado.org 

Travel Assistance for NHS Sites
1-781-333-1593

Marriott is working on establishing discounts for hotels near our clinical trial sites.  For more information, contact Ashley Lucchese, Marriott Sales Executive  Ashley.Lucchese@Marriott.com. 

Nearby hotels include: Boulder Marriott and Residence Inn Boulder.

Biobanking of Rett Syndrome and Related Disorders

Visit Biobanking of Rett Syndrome and Related Disorders Website
The purpose of this study is to advance understanding of the natural history of Rett syndrome (RTT), MECP2-duplication disorder (MECP2 Dup), RTT-related disorders including CDKL5, FOXG1, and individuals with MECP2 mutations who do not have RTT. Samples with DNA will be collected.

University of Colorado, Denver
1-720-777-5590
For more information, contact Victoria Allen victoria.allen@childrenscolorado.org.

Clinics

Rett Clinic at Children's Hospital Colorado

Visit Rett Clinic at Children’s Hospital Colorado Website
The Rett Clinic at Children’s Colorado was established in 2011 thanks to a generous gift from the Rocky Mountain Rett Association. Many doctors and specialists come together to provide coordinated care and convenience for the child and family (about 14 providers are at the first appointment).

The Rett Clinic is located in the Multidisciplinary Clinic at Children’s Colorado, which means that the doctors and specialists come directly to the patient and family (and not the other way around) to provide streamlined care for children with complex needs.  The clinic is led by Director, Dr. Tim Benke. For appointments, contact Tristen Dinkel, RN, Clinic Coordinator at rettclinic@childrenscolorado.org or call 720-777-4363.

Watch the Colorado Clinic video.

State Agencies & Resources

Local Service Agencies

Colorado HCP

Visit Colorado HCP Website
HCP provides services to children and youth with special health care needs from birth to 21 years living in Colorado, who have physical, developmental, behavioral or emotional conditions. HCP has no diagnosis or income restrictions. HCP programs are located within local public health agencies throughout Colorado and have nurse-led teams with special knowledge of the complexities that families of children and youth with special health care needs experience.

View CO Local Public Health Agency List
For information on HCP, contact your local public health agency.

PEAK Parent Center

Visit PEAK Parent Center Website
1-800-284-0251
PEAK Parent Center is a nonprofit that works every day to ensure that all people with disabilities are fully included in their neighborhood schools, communities, employment, and all walks of life.  Email info@peakparent.org.

ARC of Colorado

Visit ARC of Colorado Website
1-303-864-9334
The Arc of Colorado is dedicated to support and advocacy for people with intellectual and developmental disabilities. Through its local chapters, the Arc provides crucial information for people with intellectual and developmental disabilities.  They connect clients to community resources, help them to understand and access government services, and stand with them when they need an advocate.

Disabilityresources.org

Visit Disabilityresources.org Website
Disabilityresources.org has a comprehensive list of disability services in Colorado.

State Medicaid

PEAK

Visit PEAK Website
1-800-221-3943
PEAK is an online service for Coloradans to check eligibility and apply for Medicaid and other services.  You can also apply for Medicaid by phone.

Local Department of Human Services Offices

View Local Department of Human Services Offices
Contact your local DHS offices for Medicaid application questions or to apply in person.

View Child Health Plan Plus (CHP+)

View Child Health Plan Plus (CHP+)
1-800-221-3943
Child Health Plan Plus (CHP+) is public low-cost health insurance for children 18 and under whose family earns too much to qualify for Medicaid, but not enough to pay for private health insurance.  You can apply online or by phone.

Family Voices Colorado

Visit Family Voices Colorado Website
1-800-881-8272
Family Voices Colorado provides help with health insurance plans, applying for Medicaid, communicating with service providers, navigating Medicaid or other public systems, individual health insurance counseling (such as in benefits decision or help with the appeals process).

Medicaid Buy-In

View Medicaid Buy-In
The Medicaid Buy-In Program for Children with Disabilities (Children’s Buy-In) is a medical assistance program that will provide Medicaid benefits for children who are under age 19, have a qualifying disability, and whose adjusted family income is at or below 300% of the Federal Poverty Level (FPL).

View Local CCB Agency

View Local CCB Agency
Case Management Services assists in accessing services and supports. They help with intake, eligibility determination, service plan development, arrangement for services, delivery of services, service and support coordination, monitoring, and discharge from services. Your local CCB agency is your starting point to apply for most Medicaid Waivers

Family Support Services Program (FSSP)

View Family Support Services Program (FSSP)
The Family Support Services Program (FSSP) provides support for families who have children with developmental disabilities or delays with costs that are beyond those normally experienced by other families.  FSSP supports children with developmental disabilities or delays in remaining in their own homes.  Contact your local CCB agency for more information.

View Children’s Home and Community-Based Services Waiver (CHCBS)

View Children’s Home and Community-Based Services Waiver (CHCBS)
The CHCBS Waiver provides a home or community-based alternative to children 17 and under with significant medical needs who are at risk for acute hospital or skilled nursing facility placement. Contact your local Single-Entry Point (SEP) to start the waiver application process.

Local SEP Agencies

View Local SEP Agencies
SEP Agencies provide case management, care planning, and make referrals to other resources for children with a life-limiting illness or physical disability.

View Children’s Extensive Support Waiver (CES)

View Children’s Extensive Support Waiver (CES)
The CES Waiver provides supports and services to children with developmental disabilities or delays who have a complex behavioral or medical condition and who require near constant line of sight supervision. Contact your Local CCB to apply.

View Children with Life Limiting Illness Waiver

View Children with Life Limiting Illness Waiver
The CLLI Waiver provides a home or community-based alternative to children 18 and younger with a life limiting illness. Contact your SEP to apply.

EBD Waiver

View EBD Waiver
The EBD Waiver provides assistance to people ages 18-64 who are physically disabled and require long-term supports and services in order to remain in a community setting. Contact your SEP to apply.

Early Intervention

EI Colorado

Visit EI Colorado Website
1-888-777-4041
The Early Intervention (EI) Colorado program provides developmental supports and services for children birth through two years of age who have special developmental needs. You can request a free evaluation at any time to determine whether your child may be eligible for EI services and supports. Your local Community Centered Board (CCB) implements the EI Colorado program.

Education

CDE Office of Special Education

Visit CDE Office of Special Education Website
1-303-866-6694
This office assists students with exceptional educational needs due to disability or some other special need.

Individualized Education Program (IEP) Information

Visit Individualized Education Program Information Website
1-303-866-6619
Contact Cindy Millikin for more information.

Conservatorship

Colorado Guardianship

Visit Colorado Guardianship Website
A guardian is a person lawfully vested with the power and charged with the duty of taking care of an incapacitated  person (defined as a non-minor individual, who is unable to effectively evaluate information or make decisions to such an extent that they lack the ability to satisfy essential requirements for physical health, safety, or self-care, even with technological assistance).

Probate Court Pro Se Resource Center

1-720-865-8746
If you find you do not have an attorney and need assistance with conservatorship/guardianship issues, the Denver Probate Court Pro Se Resource Center may be able to help. They provide procedural and general information to parties without attorneys.

Handicap Placard

Colorado Division of Motor Vehicles

Visit Colorado Division of Motor Vehicles Website
1-303-205-5600
Identifying license plates or placards shall be issued to such person by submitting a completed application to the County Motor Vehicle Office. Applicants must meet the DMV requirements for disabled status and have their application signed by a medical professional.

View Local DMV offices

If you have favorite resources to share with others, please email that information and your experience to areed@rettsyndrome.org.

Legal Resources & Information

Disability Law Colorado

Visit Disability Law Colorado Website
1-800-531-2105
The Legal Center provides protection and advocacy services for people with disabilities. Services are in the form of direct representation, education, training, information and referral and legislative analysis. There are no income criteria to qualify for services. Email tlcmail@thelegalcenter.org.

Additional Resources

Rocky Mountain Rett Association

Visit Rocky Mountain Rett Association Website
The Rocky Mountain Rett Association (RMRA) was founded for three reasons; to fund research for the development of treatments & cures for Rett Syndrome and related MeCP2 disorders, to support families suffering from Rett,  and to raise awareness for Rett Syndrome.

Rocky Mountain Rett Association
PO Box 1294
Morrison, Colorado 80465
(720) 234-7673
info@rmrett.org

View Rocky Mountain Rett Association Facebook Page