Alaska Resources

Family Empowerment Representatives | Treatment and Research Centers | AK 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

David Luntz, volunteer Family Empowerment Representative,  david.luntz@hotmail.com  1-907-590-9140


Treatment and Research Centers


Clinical Sites - none at this time


State Agencies - Alaska


Local Service Agencies

Aging and Disability Resource Centers

1-877-625-2372

Alaska's ADRCs connect seniors, people with disabilities, and caregivers with long-term services and supports of their choice. The ADRC network serves Alaskans statewide, regardless of age or income level, through regional sites. 

Pediatric Specialty Clinics

Specialty clinics improve access to care for children in need of consultation, screening, and follow-up. The State of Alaska’s Section of Women’s Children and Family Health (WCFH) brings medical specialists to regional centers to offer specialty care in or close to communities where children and their families reside. Efforts are made to involve local health practitioners in these clinics to insure coordination of care.

Neurodevelopmental Outreach and Autism Screening Clinic

1-907-269-3428

Alaska Association on Developmental Disabilities (AADD)

The Arc of Anchorage 

The Arc of Anchorage has a full array of disability services for Alaskans with intellectual and developmental disabilities.

Developmental Disabilities Program Information Links

Disability Resources in Alaska


Handicap Placard 

Disability Parking Permits & Plates

You must bring the Special Disability Parking Permit (form 861) to a qualified health practitioner who will complete and sign the form. You may submit the completed form in person at your local DMV or by mail to: Division of Motor Vehicles, ATTN: Special Disability Parking Permit ,1300 W. Benson Blvd., STE 200, Anchorage, AK 99503-3600. You must apply for plates in person at your local DMV office.

Special Disability Parking Permit Form

Local DMV Offices


State Medicaid  

Apply for Medicaid 

Apply for Medicaid online at MyAlaska. Under Services for Individuals Click on ARIES Self-Service Portal. You can also apply by mail or in person with your local Public Assistance Office.

Printable Medicaid Services Application

Local Offices for Medicaid Assistance

Denali KidCare - Alaska’s Children’s Health Insurance Program - (CHIP)

DenaliKidCare is  designed to ensure that children and teens of both working and non-working families can have the health insurance they need. It is an expansion of the Medicaid Program  in Alaska. Denali KidCare is issued 12 months at a time. You will need to renew your application every 12 months to ensure there is not a break in coverage. Renewing your coverage is easy. A pre-printed form will be mailed to you 45 days prior to expiration of coverage. Apply the same way you would apply for Medicaid.

Medicare Information Office

TEFRA Waiver

TEFRA Waiver is a Medicaid program designed to help children under 19 years old with costs related to their disabilities. This covers significant medical, developmental or psychiatric needs. Though they may be deemed "disabled" or have high medical costs, not all children qualify for this program. You can apply through the State of Alaska Department of Public Assistance (DPA). The DPA is the central agency in all TEFRA Medicaid eligibility decisions.

State of Alaska Department of Public Assistance (DPA)

DPA District Offices

NFLOC Waiver Unit 

1-877-625-2372

NFLOC Waiver Unit  is responsible for the oversight of service providers and support systems of funding for Children with Complex Medical Conditions (CCMC). Apply through ADRC.  

Intellectual & Developmental Disabilities (IDD) Waiver Unit & Services

 1-907-451-5041

This program is responsible for the oversight of service providers and support systems of people with intellectual and developmental disabilities receiving funding through the Intellectual and Development Disabilities Waiver.  The purpose of the waiver is to offer a choice between home and community-based services and institutional care for people who meet waiver service criteria. 

IDD Waiver Contacts


Early Intervention

 Early Intervention Infant Learning Program (EI/ILP)

1-877-477-3659

Alaska’s Early Intervention Infant Learning Program (EI/ILP) is a program that provides specialized services for children who have developmental delays and/or disabilities. The services are for children birth to 3 years and will provide extra help for your child’s development. Please refer the child to the early intervention/infant learning program in your area.  

Early Intervention/Infant Learning programs


Education

Special Education Handbook

Parent Resources for Special Education  


Conservatorship

Guardianship and Conservatorship Forms

Office of Public Advocacy

1-877-957-3500

The Office of Public Advocacy has guardianship and conservatorship resources and information.


Transition to Adult Services  

SERRC

SERRC provides secondary transition services to districts and oversees the Alaska Transition Outcome Project grant.

Alaska Youth Transition Handbook

Access Alaska Fairbanks’ Youth Transition Program


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 

Disability Law Center of Alaska


Recreation


More Parent Recommendations  

Stone Soup Group

Stone Soup Group  is a statewide 501(c)3 non-profit that provides information, support, training and resources to assist families caring for children with special needs. SSG is staffed almost entirely by parents or family members of a child with special needs, so they know the journey and are better able to help other families navigate through what is often an overwhelming and confusing process following a diagnosis or, at times of transition later down the road. 

Alaska Rett Syndrome Families Facebook page

Click and ask to join!