Alaska

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

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

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

Aging and Disability Resource Centers

Visit the Aging and Disability Resource Centers Website
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

Visit Pediatric Specialty Clinics Website
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

Visit Neurodevelopmental Outreach and Autism Screening Clinic Website
1-907-269-3428

Alaska Association on Developmental Disabilities (AADD)

Visit Alaska Association on Developmental Disabilities (AADD) Website

The Arc of Anchorage

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

Click here to view Developmental Disabilities Program Information Links

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.

Click here to view the Printable Medicaid Services Application

View Local Offices for Medicaid Assistance

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

Visit Denali KidCare – Alaska’s Children’s Health Insurance Program Website
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. DenaliKidCare 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.

Visit the Medicare Information Office Website

TEFRA Waiver

Vist the TEFRA Waiver Website
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.

Visit the State of Alaska Department of Public Assistance (DPA) Website

Visit the DPA District Offices Website

NFLOC Waiver Unit

Visit the NFLOC Waiver Unit Website
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

Visit the Intellectual & Developmental Disabilities Waiver Unit & Services Website
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.

View IDD Waiver Contacts

Education

Special Education Handbook

View Special Education Handbook

Conservatorship

Guardianship and Conservatorship Forms

View Guardianship and Conservatorship Forms

Office of Public Advocacy

Visit the Office of Public Advocacy Website
1-877-957-3500
The Office of Public Advocacy has guardianship and conservatorship resources and information.

Transition to Adult Services

SERRC

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

Alaska Youth Transition Handbook

View the Alaska Youth Transition Handbook

Access Alaska Fairbanks’ Youth Transition Program

Access Alaska Fairbanks’ Youth Transition Program

Handicap Placard

Disability Parking Permits & Plates

Visit the Disability Parking Permits & Plates Website
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.

Click here to view the Special Disability Parking Permit Form

View Local DMV Offices

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

Legal Resources & Information

Disability Law Center of Alaska Website

Visit Disability Law Center of Alaska Website

Additional Resources

Stone Soup Group

Visit Stone Soup Group Website
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.

Visit Alaska Rettsyndrome.org Families Facebook Page

Click and ask to join!