New Mexico Resources

Family Empowerment Representatives | Treatment and Research Centers | NM 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


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

Nearest 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 -  None at this time


 State Agencies - New Mexico


Local Service Agencies

Yes to New Mexico (YesNM)

1-800-283-4465

YesNM is a website to help quickly check eligibility and apply for or renew public assistance programs.

Human Services Department (HSD)

HSD serves over 800,000 New Mexicans each month and has many programs and resources to help. 


Handicap Placard 

DMV New Mexico 

To obtain a handicap placard in New Mexico, complete the application and submit to a physician for a signature. Take the application to your local MVD office to be processed.

Fill, Print and Go forms

There is a form available here for the application for a handicap placard in New Mexico.


State Medicaid  

Centennial Care Program

 1-855-637-6574

This is a Medicaid program that is available through the Human Services Department (HSD). It's aim is to modernize the Medicaid program in New Mexico and to provide all necessary services. You can apply online through YesNM or visit your local field office. 

Field Offices

Developmentally Disabled Waiver (DD Waiver)

1-800-283-5548

The DD Waiver serves individuals with specific related conditions and developmental disabilities that occur before the age of 22. You can apply by phone.

Medically Fragile Waiver (MF Waiver)

The MF Waiver serves individuals who have been diagnosed with a medically fragile condition before reaching age 22, and, who have a developmental disability or delay or who are at risk for developmental delay.

Home and Community-Based Services Waiver application 

This is the application for all waivers in New Mexico.

Children’s Medical Services

1-505-476-8860

Children’s Medical Services is part of the Family Health Bureau in the Public Health Division of the Department of Health, and is federally funded through Title V and State General Funds to serve as a safety net for medical management, payment for medical services, diagnostic studies and service coordination for Children and Youth with Special Health Care Needs (CYSHCN). 


Early Intervention

Family Infant Toddler Program (FIT)

The FIT program is a statewide program that provides early intervention services to infants, toddlers who have or are at risk for developmental delays and families in New Mexico. Early intervention provides activities and strategies for families to use to promote their child's development throughout the day. 


Education   

Public Education Department, Special Education Bureau

The Special Education Bureau handles special education services in New Mexico. Check your local school district for specific information in your area.

Developing Quality IEP's Technical Assistance Manual

This manual is published by the New Mexico Public Education Department to help families with the IEP process. 


Conservatorship 

The Handbook for Guardians and Conservators in New Mexico

New Mexico Conservatorship Forms


Transition to Adult Services 

A Bridge to the Future 

This is a guide written by a parent of a child with disabilities to guide other families through the transition process.

Graduation Options for Students with Disabilities Technical Assistance Manual

This manual was developed by the New Mexico Public Education Department to help school staff and families with the transition process.


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.


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


Legal Resources 

The ARC of New Mexico

 1-800-358-6493

The ARC of New Mexico strives to improve the quality of life for individuals with disabilities.


Recreation


More Parent Recommendations 

New Mexico Rettsyndrome.org Families Facebook page 

Click and ask to join!

Parents Reaching Out

1-800-524-5176

Parents Reaching Out provides case by case care for families. It is a non-profit organization that works with parents, caregivers, educators, and other professionals to promote healthy, positive and caring experiences for families and children.