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
[email protected] 1-913-221-8157
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.
State Agencies & Resources
Local Service Agencies
Arizona Department of Economic Security (DES)
Visit the Arizona Department of Economic Security (DES) Website
The DES provides supports and services to over 35,000 people. Services are delivered in the person’s home as well as their community. Services are authorized and monitored by a support coordinator. While some services are delivered directly by the State, most services are delivered through a large network of individual and agency contracted providers. Determining eligibility is the first step and can be done online.
Visit the Arizona DDD Website
The Division of Developmental Disabilities manages the ALTCS Program and a state program for those who are not eligible for ALTCS. They provide services and care coordination for those with developmental disabilities.
Child and Family Resources
Visit the Child and Family Resources Website
Child and Family Resources can help you find resources in your community.
Visit the Medical Home Website
Medical Home is a family-centered approach to providing comprehensive primary care. This office promotes best practices through education, partnerships with state agencies, community-based organizations which provide services, care or health plans for children with special health care needs.
The Dream Factory
Visit the Dream Factory Website
The Arizona Chapter of the The Dream Factory is a 501c3, non-profit, dream-granting organization that grants dreams to critically and chronically ill children from ages 3 to 18.
Visit Healthins.org Website
This site has information on Medicaid eligibility, enrollment and waivers in Arizona.
The Arizona Health Care Cost Containment System (AHCCCS)
Visit the Arizona Health Care Cost Containment System (AHCCCS) Website
AHCCCS is Arizona’s Medicaid program and the State of Arizona’s health care program for persons who do not qualify for Medicaid.
Visit the ALTCS Website
ALTCS is the “Arizona Long Term Care System” under the umbrella of the Arizona Medicaid Program AHCCCS (Arizona Health Care Cost Containment System). It is designed for people who are 65 years or older and/or physically disabled or developmentally disabled and need services of a Skilled Nursing Facility or Assisted Living Facility. Many people on the program even live in their own home and receive in-home health services. Applications for ALTCS must be completed in person through a local ALTCS office.
Visit the Health-e-Arizona Plus Website
You can apply for AHCCCS Benefits at Health-e-Arizona Plus.
Arizona Department of Health Services DHS
Visit the Arizona Department of Health Services DHS Website
Arizona Department of Health Services DHS website lists starting points for people new to Arizona to navigate what to do for children with special health care needs.
Arizona Early Intervention Program (AZEIP)
Visit the Arizona Early Intervention Program (AZEIP) Website
AZEIP is the statewide system of supports and services for families of children, birth to three, with disabilities or developmental delays.
Click here to view AZEIP FAQ’s
Exceptional Student Services (ESS)
Visit the Exceptional Student Services (ESS) Website
The mission of ESS is to provide high-quality service that improves outcomes for all students, making them well prepared for the next step – college, technical/trade school, career, job, or other means of engagement. To achieve this, ESS has a system of supports that wraps around educators to improve student outcomes—academically, behaviorally, and functionally.
Visit the XZ FIND Website
AZ FIND provides information and resources to parents, public education agencies (PEAs), state agencies, and professional organizations regarding child find statutes, policies, and procedures. This is a “first step” for getting services in school.
Raising Special Kids (RSK)
Visit the Raising Special Kids (RSK) Website
RSK is a nonprofit parent organization that provides support and information for parents of children with disabilities from birth to age 26. Programs are offered at no cost to families and are
available in English and Spanish.
ESS Program Specialists
Visit the ESS Program Specialists Website
ESS program specialists are assigned to each Arizona district and charter school. They offer technical assistance and monitor special education programs.
Early Resolution Specialists
Visit the Early Resolution Specialists Website
Early Resolution Specialists provide technical assistance to parents and schools seeking early resolution of complaints, in addition to guiding the formal dispute resolution options available under the IDEA.
State Bar of Arizona
Visit the State Bar of Arizona Website
State Bar of Arizona provides information on guardianship and conservatorship. They have forms available online.
Transition to Adult Services
Disability Benefits 101
Visit Disability Benefits 101 Website
This site gives you tools and information on health coverage, benefits, and employment for people with disabilities
Arizona Department of Education
Visit the Arizona Department of Education Website
The Department of Education has a comprehensive list of transition resources for parents and children with disabilities.
Arizona Department of Transportation (ADOT)
Visit the Arizona Department of Transportation (ADOT) Website
The Motor Vehicle Division (MVD) issues handicap placards and plates.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].
AZ Medical Professionals
Dr. Diana Honebrink Pediatrics, Oro Valley 1-520-825-7111
Dr. Theresa Grebe Genetics, Phoenix 1-602-933-4363
Dr. Shauna Schroeder Gastroenterology, Phoenix 1-602-933-0940
Children’s Clinics for Rehabilitative Services Tucson 1-520-324-5437
Dr. Richard Shindell Pediatric Orthopedic Surgery, Phoenix 1-602-604-8941
AZ Therapy Contacts
Heather Rainey Speech Therapy, Marana 1-520-204-5362
Paula Kelly OT, Tucson 1-520-325-6595
Meal Time Connections
Visit Meal Time Connections Website
Meal Time Connections provides professionals trained in complicated feeding concerns who offer the highest level of feeding evaluation, family support and feeding therapy for every child and family they meet.
Legal Resources & Information
State Bar of Arizona
Visit the State Bar of Arizona Website
The State Bar lists programs providing free or reduced rate legal aid for families
Arizona Center for Disability Law
Visit Arizona Center for Disability Law Website
This center is a federally designated Protection and Advocacy System (P&As) for the State of Arizona. P&As assure that the civil rights of persons with disabilities are protected. They have an extensive list of resources (legal, advocacy, employment, housing and more).
Arizona Travel Resources
Grand Canyon: https://www.nps.gov/grca/planyourvisit/accessibility.htm
Sedona, AZ: http://wheelchairtraveling.com/sedona-arizona-in-my-wheelchair/
Sedona Drive Tour: http://sedonadrivetours.com/index.htm
Rocky Mountain Rett Association (RMRA)
Visit Rocky Mountain Rett Association (RMRA) Website
Rocky Mountain Rett Association (RMRA) is a member-based organization serving the Rocky Mountain region dedicated to improving the quality of life for girls and their families impacted by Rett Syndrome. We achieve this by providing supportive services and resources to girls and their families, engaging in advocacy, education and awareness efforts, and raising funds to support the search for a cure and improved treatment options.
Parents of Southern Arizona
Visit Parents of Southern Arizona Website
Pilot Parents of Southern Arizona provides encouragement and support to families who have children with special needs. Available services include peer to peer support, sibling support, information on disabilities, advocacy training, educational support and LEAP – a Leadership Education Advocacy Partnership program. All programs and services are offered free of charge without regard of the child’s disabilities, age, family income, qualifying conditions or other eligibility factors.
Mothers of Arizona with Special Needs Facebook Page
Arizona Rettsyndrome.org Families Facebook Page
Visit Pretty Halos Website
Pretty Halos is a not for profit organization which seeks to help Rett Families with additional financial support that insurance simply doesn’t cover.