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The Alaska Family to Family
Health Information Center (F2F)

For the last eighteen years, Stone Soup Group, a grassroots, Anchorage-based non-profit organization, founded by parents, has been a catalyst for much of the development occurring in Alaska's services for children with special health care needs.  Despite our efforts, Alaska still has a long way to go to ensure that families caring for children with special health care needs have access to information, training and supports.  The Alaska Family-to-Family Health Information Center is designed to filll this critical gap in Alaska's service system for families of children with special health care needs.

Stone Soup Group is the Family Voices State Affiliate Organization for Alaska.

Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities.  Through this national network, Family Voices:

heart of family voices provides families tools to make informed decisions
heart of family voices advocate for improved public and private policies
heart of family voices build partnerships among professionals and families
heart of family voices serve as a trusted resource on health care

 

National Family Voices is an organization that partners with professionals and families to advocate for health care services that are family-centered, community-based, comprehensive, coordinated and culturally competent.

Learn more about:

Children with Special Health Care Needs
Medicaid & Waivers
Family Voices' Commitment to Diversity & Cultural Competence

 To learn more about the national initiatives of Family Voices, please visit the Family Voices website.


About Family to Family

The Alaska Family-to-Family Health Information Center at Stone Soup Group has the following primary goals:

  • Create a statewide information clearing house for families caring for children with special health care needs.
  • Create a statewide peer to peer network and support forum for families caring for children with special health care needs
  • Develop funding sustainability for the ongoing operation of the center

Our goal is to connect families statewide to other families who are experiencing similar challenges in accessing quality services and supports for their children.

Believing that parents are experts in their own respective journeys, the Alaska Family Advisory Council (AFAC) guides our efforts in identifying service delivery shortcomings and raises awareness to state and federal policy-makers that action is urgently needed. If you are a family member of an individual with special needs, or a self-advocate, and are interested in joining this fun and important group, email Amy Westfall, F2F Project Coordinator at amyw@stonesoupgroup.org or Travis Noah, F2F Project Assistant at travisn@stonesoupgroup.org

group with awarenessF2F at Stone Soup Group Vision Statement

Alaskan families, caring for children with special health care needs will have the support and information necessary to lead healthier and more independent lives.

Upcoming Trainings

Stone Soup Group's Upcoming Workshops Here you will find a list of upcoming trainings and workshops sponsored by Stone Soup Group. There are links to register online.

Anchorage Family Directory Calendar  Look here for a calendar of trainings, and a list of local parent educational opportunities and contact numbers for more information. It is also the home of AK Connect, Alaska's statewide disability newsletter.  This Web site is funded by a grant from the Alaska Department of Education and Early Development and maintained by the Anchorage School District's STEP Center.


Resource Links & Tools

Alaska Sites

The following links are statewide information and referral sites that are helpful for families caring for children with special health care needs. Please check out these sites and email Amy Westfall at amyw@stonesoupgroup.org  if you don't find what you're looking for.

AK Info A thorough listing of agencies and individuals providing health and social services maintained by the United Way. This site utilizes categories and sub-categories to define a search for service agencies.

Where to Turn The State of Alaska Governor's Council on Disabilities and Special Education maintains a resource directory for families and professionals seeking services for children experiencing developmental disabilities. Here you type in a keyword and all of the agencies associated with that keyword will be listed.

State of Alaska Health and Social Services This site will direct you to state health care services, infant learning program (located under Offices of Children Services), services for individuals experiencing developmental disabilities and other helpful information.

computerNational Sites

American Council on Rural Special Education (ACRES) The American Council on Rural Special Education (ACRES) is an organization comprised of special educators, general educators, related service providers, administrators, teacher trainers, researchers, and parents who are committed to the enhancement of services to students and individuals living in rural America.

Epilepsy and My Child has a video designed for parents of children who have been newly diagnosed with epilepsy. This video provides answers to some of the most frequently asked questions that parents have or are may be afraid to ask. Our parents give honest, detailed answers about their daily lives, children and the changes that epilepsy has brought into their lives.

Healthfinder Your guide to reliable health information.

National Dissemination Center for Children with Disabilities (NICHY) The Dissemination Center is part of a broad Federal effort to improve results for children with disabilities. We're funded by the Office of Special Education Programs (OSEP) at the U.S. Department of Education to connect you with the resources you need in your efforts on behalf of infants, toddlers, children, and youth who have disabilities.

Parent to Parent USA Parent to Parent-USA (P2P-USA) is an alliance of Parent to Parent programs whose primary purpose is to help emerging or established Parent to Parent programs.

Social Security Online The Social Security and Supplemental Security Income disability programs are the largest of several Federal programs that provide assistance to people with disabilities.

International Sites

Council for Exceptional Children The Council for Exceptional Children (CEC) is the largest international professional organization dedicated to improving educational outcomes for individuals with exceptionalities, students with disabilities, and/or the gifted.

Family Village We are a global community that integrates information, resources, and communication opportunities on the Internet for persons with cognitive and other disabilities, for their families, and for those that provide them services and support.

International Center for Disability Resources on the Internet Our overarching vision is the equalization of opportunities for persons with disabilities. As an internationally recognized public policy center organized by and for people with disabilities, ICDRI seeks to increase opportunities for people with disabilities by identifying barriers to participation in society and promoting best practices and universal design for the global community. ICDRI's mission includes the collection of a knowledge base of quality disability resources and best practices and to provide education, outreach and training based on these core resources.

Do you want to submit a link?A Resource?  Then please email Amy Westfall at amyw@stonesoupgroup.org

Tools

Paper Trail Notebook



Family Support

Are you caring for a child with special health care needs?

Please take a couple of minutes to complete this online support and training survey.  Your answers will help to shape the statewide peer-to peer support network we are building.  Thanks!

Need to talk to another parent? 

Please e-mail TravisNoah, the Family to Family HIC Project Assistant at travisn@stonesoupgroup.org with contact information and let us know what would be helpful to you and a Peer Mentor will contact you.

Prefer to speak to another parent? Please provide contact information and some information on what would be helpful.

Online Community

Are you interested in receiving or sharing parent training information, updates on health care and disability issues, recreational opportunities and other family support information?  If so, please click the link at the bottom of the site to subscribe to our listserv.

Want to volunteer to be a peer mentor? 

Volunteering to provide support to other parents in similar shoes is a beautiful way to share how much your children are teaching you.  All volunteers will be asked to complete training before being matched with a parent needing support.  The training can be delivered utilizing teleconferencing and videoconferencing to accommodate families in rural parts of Alaska. E-mail us for more information.


Family Stories

Tell us your story! 

We want to hear your family's story. How did you overcome barriers to accessing services?  What and who helped?  What inspired you?  What can you tell other families? We are setting up a Family Stories Workgroup that will allow families to come together to learn effective ways to tell their stories and make their voices heard.      

Send us your stories at amyw@stonesoupgroup.org


Helpful Downloads

The below documents are in PDF format and require Adobe Acrobat Reader for viewing. Acrobat Reader software may be downloaded for free from Adobe Systems, Inc.

A Family's Guide to the Child Welfare System
The Guide is designed to follow a family's path through the child welfare system from first contact.

Health Care Provider Listing
This is a listing of health care providers who have responded to our survey asking if they care for children with special needs. While our aim is to provide accurate, up-to-date information, the listing is not necessarily complete and information may have changed since this was printed. Please contact the provider directly to confirm it. The Stone Soup Group does not endorse or recommend these providers

A Guide for Writing IEPs
This guide is intended to provide technical assistance for educators, parents, and others who develop Individualized Education Programs (IEPs) for children with disabilities. The IEP ensures that a child with a disability receives a Free Appropriate Public Education (FAPE) in the least restrictive environment (LRE).

Working with Caregivers in your Home
A Guide for Families of Children with Special Health Care Needs

Health Insurance Laws at Work and Related Rights
A Guide for Families of Children with Special Health Care Needs

Health Insurance Guidebook
Your Family's Guide to Advocating for Your Child With Special Needs

Working with Families as Partners and Consultants
A Guide for Professionals Implementing Family-Centered Care

What You Should Know When You Apply For SSI Disability Benefits For Your Child
Children from birth up to age 18 may get Supplemental Security Income (SSI) benefits. They must have a disability and they must have low income and few resources. Here are answers to some questions people ask about applying for SSI for children.

Bullying is NOT A Fact of Life
A publication from the U.S. DEPARTMENT OF HEALTH & HUMAN SERVICES Substance Abuse and Mental Health Services Administration, Center for Mental Health Services.

This program is made possible by a grant from the Health Resources and Services Administration (HRSA),
grant number H84MC12893, Maternal and Child Health Bureau (MCHB).

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