Arizona

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

Cate Galyon, volunteer Family Empowerment Representative   Catherine_galyon@yahoo.com   1-520-704-3787

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.

State Agencies & Resources

Local Service Agencies

Arizona Department of Economic Security (DES)

Visit the Arizona Department of Economic Security (DES) Website
1-602-542-4791
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.

Click here to view FAQ’s for DES Services

Arizona DDD

Visit the Arizona DDD Website
1-866-229-5553
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.

Medical Home

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.

State Medicaid

Healthins.org

Visit Healthins.org Website
1-877-809-0501
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
1-602-417-4000
AHCCCS is Arizona’s Medicaid program and the State of Arizona’s health care program for persons who do not qualify for Medicaid.

ALTCS

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.

View Local ALTCS Offices

Health-e-Arizona Plus

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.

Early Intervention

Arizona Early Intervention Program (AZEIP)

Visit the Arizona Early Intervention Program (AZEIP) Website
1-888-439-5609
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

Education

Exceptional Student Services (ESS)

Visit the Exceptional Student Services (ESS) Website
1-602-542-4013
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.

AZ FIND

Visit the XZ FIND Website
1-800-352-4558
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
1-888-877-5910
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
1-855-383-9801
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.

Conservatorship

State Bar of Arizona

Visit the State Bar of Arizona Website
1-866-482-9227
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.

Handicap Placard

Arizona Department of Transportation (ADOT)

Visit the Arizona Department of Transportation (ADOT) Website
The Motor Vehicle Division (MVD) issues handicap placards and plates.

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

Medical Professionals

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

Therapy

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).

Recreation

Knoebel's

Visit Knoebel’s Website
Knoebel’s is located in Elysburg. There is no admission to enter the park. Guests purchase tickets for the rides. They offer a wrist band that allows disabled guests to enter through the exit gates.

Additional Resources

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
1-877-365-7220
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

View the Mothers of Arizona with Special Needs Facebook Page

Arizona Rettsyndrome.org Families Facebook Page

View the Arizona Rettsyndrome.org Families Facebook Page

Pretty Halos

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.