Arizona Resources  

Family Empowerment Representatives | Treatment and Research Centers | AZ 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

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

Ciara Martinez, volunteer Family Empowerment Representative, Tucson, AZ  ciaramartinez1130@gmail.com  1-520-603-3080    


Treatment and Research Centers


Clinics & Clinical Trials

Signifies site involved with the Natural History Study - none at this time


 State Agencies - Arizona


Local Service Agencies

Arizona Department of Economic Security (DES)

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. 

FAQ's for DES Services

Arizona DDD

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. 

Integration of Medical Care and Behavioral Health Services for Arizonan’s with Developmental Disabilities 

This document will explain the role of the DDD

Client Services Trust Fund

1-602-542-0419 Trust Fund Coordinator

The Client Services Trust Fund is a one-time assistance fund that was established to assist people with developmental disabilities reach the goal of increased independence. The Developmental Disabilities Advisory Council reviews and approves expenditures which meet the program goals. Eligibility information is available on the website or contact the Client Services Trust Fund Coordinator.

Child and Family Resources

Child and Family Resources  can help you find resources in your community.

Medical Home

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


Handicap Placard

Arizona Department of Transportation (ADOT)

The Motor Vehicle Division (MVD) issues handicap placards and plates.


State Medicaid 

Healthins.org

1-877-809-0501

This site has information on Medicaid eligibility, enrollment and waivers in Arizona. 

The Arizona Health Care Cost Containment System (AHCCCS)

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

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.

Local ALTCS Offices 

Health-e-Arizona Plus

You can apply for AHCCCS Benefits at Health-e-Arizona Plus.

Arizona Department of Health Services DHS

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)

 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. 

AZEIP FAQ's

Department of Economic Security (DES)

The DES works with families, community organizations, advocates and state and federal partners to realize our collective vision that every child, adult, and family in the state of Arizona will be safe and economically secure. They have an excellent list of resources available for families of young children.


Education

Exceptional Student Services (ESS)

 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

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)

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

ESS program specialists are assigned to each Arizona district and charter school. They offer technical assistance and monitor special education programs.

Early Resolution Specialists

1-855-383-9801

Early Resolution Specialists  provide technical assistance to parents and schools seeking early resolution of complaints, in addition to providing guidance on the formal dispute resolution options available under the IDEA. 


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.

State Bar of Arizona

1-866-482-9227

State Bar of Arizona provides information on guardianship and conservatorship. They have forms available online. 


Transition to Adult Services

Office for Children with Special Health Care Needs

Transition is a period of learning, skill building and goal setting experienced by young people as they prepare to move from adolescence into adulthood. A successful transition from pediatric to adult healthcare systems is essential. How to begin and explanations of the process are available on the website.

Disability Benefits 101

 This site gives you tools and information on health coverage, benefits, and employment for people with disabilities

Arizona Department of Education

The Department of Education has a comprehensive list of transition resources for parents and children with disabilities.


Parent Recommendations

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


 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 Tucson1-520-324-5437

 Dr. Talway Dinesh Center for Neurosciences, Tucson 1-520-326-2661 

 Dr. Anne Garrett Pediatrics, 2 locations in Scottsdale  1-480-609-8100 

Dr. John Kerrigan Pediatric Neurology, Phoenix 1-602-933-0970

Dr. Richard Shindell Pediatric Orthopaedic Surgery, Phoenix 1-602-604-8941 

Dr. Vinodh Narayanan Neurologist, Phoenix 1-602-343-8620

Dr. Randall Lout  Pediatric Dentistry, Gilbert  1-480-719-7758

ClinicalTrials.gov

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


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

Heather Rainey Speech Therapy, Marana  1-520-204-5362

Paula Kelly  OT, Tucson 1-520-325-6595

Meal Time Connections

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

State Bar of Arizona

The state Bar lists programs providing free or reduced rate legal aid for families

Arizona Center for Disability Law

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 


More Parent Recommendations

Rocky Mountain Rett Association (RMRA)

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

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. 

Arizona Department of Education

The Department of Education has a comprehensive list of transition resources for parents and children with disabilities. 

Mothers of Arizona with Special Needs Facebook page

Arizona Rettsyndrome.org Families Facebook page

Pretty Halos

Pretty Halos is a not for profit organization which seeks to help  Rett Families with additional financial support that insurance simply doesn't cover.