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, International Rett Syndrome Foundation
[email protected] 1-913-221-8157
Family Empowerment Representative
Alicia Cortez, volunteer Family Empowerment Representative
[email protected] 1-505-429-2221
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.
Rett syndrome clinical trials are available at various stages in the process. Please visit our Clinical Trial page for current enrollment status.
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. 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).
State Agencies & Resources
Local Service Agencies
Yes to New Mexico (YesNM)
Visit Yes to New Mexico Website
YesNM is a website to help quickly check eligibility and apply for or renew public assistance programs.
Human Services Department (HSD)
The Human Services Department provides services and benefits to 1,022,395 New Mexicans through several programs.
This is your portal to quickly and easily apply, check, update, or renew for a variety of public assistance programs. Create an account now to apply for and access your status for various benefits such as:
- Medical Assistance(Medicaid)
- Food Assistance(SNAP)
- Cash Assistance(TANF)
- Energy Assistance(LIHEAP)
Centennial Care Program
Centennial Care is the name of the New Mexico Medicaid program. Centennial Care began on January 1, 2014 with services provided by four managed care organizations (MCOs). These services include physical health, behavioral health, long-term care and community benefits.
Eligibility for all Medicaid programs requires that individuals meet certain federal guidelines. These include citizenship, residency and income requirements.
To apply for Centennial Care Medicaid, check eligibility, or enroll in or switch your managed care organization (MCO), visit the YesNM Online Portal.
Developmentally Disabled Waiver (DD Waiver)
Visit Developmentally Disabled Waiver (DD Waiver) Website
The Developmental Disabilities (DD) Waiver program also known in New Mexico as the “traditional DD waiver” is designed to provide Services and Supports that assist eligible children and adults with Intellectual and Developmental Disabilities (IDD) to participate as active members of their communities. The DD Waiver is one of several waivers available in New Mexico.
DD Waiver Eligibility Determination & Application
Visit DD Waiver Eligibility Determination & Application
Individuals with intellectual and developmental disabilities who meet the definition of developmental disability in accordance with New Mexico Administrative Code NMAC 8.290.4 are eligible for the DD Waiver. In general, to match the definition of a developmental disability the individual must:
- Have an Intellectual Disability, onset by age 18 or
- A specific related condition and
- Have significant limitations in at least 3 areas of major life activity that began prior to age 22.
Medically Fragile Waiver (MF Waiver)
In New Mexico, children who have a high level of dependence on medical technology such as ventilators, tracheostomies, oxygen, feeding tubes, dialysis, intravenous medication and require total care for all their daily needs are identified as medically fragile.
Medically Fragile Case Management Program (MFCMP), the Medically Fragile Waiver, and community services support families in their decision to care for their child who is medically fragile in their home.
Home and Community-Based Services Waiver application
The Centers for Medicare and Medicaid Services launched its first self-directed Home and Community-Based Services (HCBS) waiver program, named Mi Via. Mi Via, which means “my path”, “my way” or “my road”, is designed to assist you in managing your own services and supports to live your best life.
Public Education Department, Special Education Bureau
The Special Education Division provides support to districts, parents and students with disabilities to ensure outcomes of a free appropriate public education for students protected under the Individuals with Disabilities Education Act (IDEA).
Developing Quality IEP's Technical Assistance Manual
Graduation Options for Students with Disabilities Technical Assistance Manual
NM Technical Evaluation and Assessment Manual: Determining Eligibility for IDEA Part B Special Education Services
Part B refers to Assistance for Education of all children (age three up to twenty-two) with disabilities.
NM Guidance: Children Transitioning from IDEA Part C to Part B
The intent of the manual is to provide relevant information for early childhood providers (Part C and Part B) so they can assist and support families in navigating from one service system to the next. Part B refers to Assistance for Education of all children (age three up to twenty-two) with disabilities. Part C refers to services for infants and toddlers with disabilities (birth to three) or risk for developmental delay and their families.
NM Local Education Agency (LEA) Responsibilities Regarding Child Find for Preschool Students who Reside on a Reservation within LEA Jurisdiction
“Child Find” is the affirmative, ongoing obligation of states and local districts to identify, locate, and evaluate all children with disabilities residing within the jurisdiction who are in need of special education and related services.
There are many children in New Mexico (Birth to age 5) who reside on a Reservation within an LEA’s Jurisdiction. This document provides guidance as to who is responsible for providing special education services, reporting to the Office of Special Education Programs (OSEP), and ensuring that Child Find is carried out for those children.
NM Developmental Disabilities Planning Council
The Developmental Disabilities Planning Council’s (DDPC) Office of Guardianship (OOG) is a statewide publicly funded program for New Mexican adults who need a Guardian, are income eligible, and are alleged to be incapacitated.
Transition to Adult Services
NM Developmental Disabilities Planning Council
The New Mexico Center for Self Advocacy is a place where people with intellectual and developmental disabilities go to meet, organize, work and train others on how to improve their quality of life. Our goal is to help and support people with developmental disabilities in becoming empowered, making their own decisions, speaking up for themselves and others, taking control of their own lives, creating awareness about disability issues and achieving maximum independence and quality of life.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].
Legal Resources & Information
New Mexico IRSF Families Facebook page
Parents Reaching Out
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.
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