Colorado Resources

Family Empowerment Representatives  | Treatment and Research Centers | CO State Agencies | Parent Recommendations


 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.

Brittney Gibson, Rettsyndrome.org  bgibson@rettsyndrome.org  1-800-818-7388

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


Regional Rett Syndrome Associations

Rocky Mountain Rett Association

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 


Treatment and Research Centers


Clinics

Rett Clinic at Children's Hospital Colorado

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.


Clinical Trials                                         Please contact the trial site for current enrollment status.

 

Natural History Study

The objective of this study is to gather as much data as possible about children and adults with Rett syndrome. This includes information about nutrition, development, and height & weight measurements. This data will stimulate more clinical research and better prepare us for future clinical trials. 

University of Colorado/ Children's Hospital Colorado

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

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 


 State Agencies - Colorado


Local Service Agencies

Colorado HCP

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.

CO Local Public Health Agency List

 For information on HCP contact your local public health agency.

PEAK Parent Center

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.   info@peakparent.org

CCB Directory Community Centered Boards (CCBs)

CCB Directory Community Centered Boards (CCBs) are responsible for determining whether individuals meet the Colorado definition for developmental disability. Each of the 20 CCBs in the state has a specific service area. DDRC serves Jefferson, Summit, Gilpin and Clear Creek counties.

ARC of Colorado

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

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


Handicap Placard

Colorado Division of Motor Vehicles

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. 

Local DMV offices


State Medicaid 

PEAK

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

Contact your local DHS offices for Medicaid application questions or to apply in person.

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

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

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).

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)

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.

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

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

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.

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

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

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

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

1-303-866-6619

Contact Cindy Millikin for more information. 


Conservatorship

Conservatorship is a legal proceeding in which an individual or agency (to be known as the "conservator") is appointed by a court to be responsible for a person who needs assistance in daily living. Check with your child's high school or your county Superior Court Probate Office for information on Self Help Clinics. This process should start 6 months before the 18th birthday.

Colorado Guardianship

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. 


Transition to Adult Services

CDE Secondary Transition

This  team is committed to providing information, technical assistance, and professional development to administrative staff to ensure the implementation of practices that will lead to positive, successful post-school outcomes for all youth.

Imagine Colorado

 1-303-665-7789

This site provides excellent information and resources for transition to adulthood. 


Parent Recommendations

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


 Medical Professionals

ClinicalTrials.gov

This site has a comprehensive listing of clinical studies involving Rett Syndrome patients or families.

PSA Healthcare

PSA’s broad range of services expands beyond in-home Private Duty Nursing care to include in-home aide services, respite care, school nurse services, therapies, and rehabilitation. Through the use of a family-centered care approach, PSA Healthcare nurses work closely with the family to build confidence and create and implement the right care plan. Care that supports family involvement. Care that improves the quality of lives and fosters independence. Care that gives patients and their families dignity, respect and hope.


Therapy ( PT, OT, Speech, Hippotherapy and Aquatherapy)


Legal Resources

Disability Law Colorado

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.  tlcmail@thelegalcenter.org  


Recreation


More Parent Recommendations

Rocky Mountain Rett Association Facebook page

Rocky Mountain Rett Association Community Facebook page