Information and Resources for Families

Family–to–family support groups

Congenital Adrenal Hyperplasia (CAH) Family Support Group and Fatty Acid Oxidation Disorders (FAOD) Family Support Group provide support to parents of children born with CAH/FAOD and mothers found with FAOD. The groups meet twice a year. One session focuses on education and the other is a social event. Both events provide a way to meet other parents for discussion and support. Contact: Children & Youth with Special Health Needs at or call 1–800–728–5420.

Family support and services from Children's Hospital and Clinics of Minnesota

Down Syndrome Association of Minnesota Parent Groups provide support and information to parents of children with Down syndrome. These groups offer a safe place to share the joys and challenges of raising a child with Down syndrome.

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Family health history resources and tools

Knowing our family health history is very important for our health. A family health history is the information about diseases and conditions in our extended families. This list of resources will help you learn more about gathering and using family health histories to improve health. This information is to be shared with other family members and health care providers.

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Financial and other services for families with children & youth with special health needs

CYSHN Resources for Children with Special Health Needs (PDF)

Bridge to Benefits Minnesota links families and individuals to public Work Support Programs and tax credits. You will find information about: Eligibility Screening Tool for Health Insurance Programs, Energy Assistance, Supplemental Nutrition Assistance (food stamps), School Meals, Child Care Assistance, Earned Income Tax Credit, or Working Family Credit.

Disability Linkage Line is an information and assistance resource for all disability–related questions. Counselors help people identify resource and benefit options, manage benefits, overcome barriers, and find solutions related to: disability benefits, financial needs, legal issues, work planning, etc. Also, find information about transition from school to work with these youth in transition tools.

Follow Along Program is a statewide, child find activity that supports young children who are at–risk for experiencing developmental delays. FAP will help you know if your child is playing, talking, growing, moving, and acting like other children the same age.

Need health insurance? New! Get updates about the Health Insurance Marketplace at
The Health Insurance Marketplace is a new way to get coverage that meets your needs starting October 1, 2013. Answer a few questions at their website to learn if you qualify for lower costs.

Affordable Care Act (ACA) Fact Sheets for Families Four fact sheets in plain language, to explain specific parts of the ACA that benefit children and youth with special health needs.

Local Public Health Departments help answer questions for your child with special needs. Local public health assists with finding community services that could benefit your child, available financial resources, and well child exams and immunizations.

Minnesota Department of Human Services provides information about programs including Medical Assistance (MA) and MN Health Care Programs, Financial Resources, and TEFRA. The department also has a Provider Help Line for billing and related questions.

Minnesota Parents Know provides trusted parent information beginning at birth focused on child learning, development, health, and safety. Information includes: A–Z parenting topics, parent to parent support, age specific developmental milestones, and how to make a referral through Help Me Grow for young children with developmental concerns.

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Organizations of interest to families with children and youth with special health needs

The Arc of Minnesota promotes and protects the human rights of people with intellectual and developmental disabilities. As a statewide, non–profit organization, the Arc of Minnesota provides information and connection to resources for people with developmental disabilities and their families and also acts as an advocate when needed.

Autism Society of Minnesota (AUSM) is a non–profit organization dedicated to enhancing the lives of those affected by autism from birth through retirement. Members include families, educators, caregivers, and professionals who support individuals with autism spectrum disorders and are dedicated to education, advocacy, and support.

The Centers for Disease Control and Prevention Birth Defects Information for Families is an online resource which contains tools and information about birth defects for families.

Family Voices of Minnesota is a grass roots family organization that aims to achieve family–centered care for all children, youth, and young adults with special health care needs. Through state and national networks of families and providers, Family Voices of Minnesota provides tools that build partnerships among professionals, patients, and families, and serves as a trusted resource for information to improve health system policies.

Galactosemic Families of MN (GFMN) provides support and education to galactosemic families and interested professionals. GFMN promotes improved communication between professionals and families living with galactosemia in Minnesota.

Lasting Imprint is a non–profit corporation established by individuals committed to fighting congenital heart defects (CHD). Lasting Imprint exists to create a supportive community that will inspire people to join in the fight against congenital heart defects through education, research, and assistance to heart families.

Some children with metabolic conditions require special diets. The Medically Prescribed Formula table highlights the recommended medically prescribed formula to treat these conditions.

Minnesota Hands & Voices provides information, support, and referral to families learning of their child´s hearing loss. Parent Guides discuss your concerns with you and will send you information related to hearing loss and other topics of interest. They will also refer you to organizations and information sources, including other families of children with hearing loss, which you may find helpful.

Minnesota Organization on Fetal Alcohol Syndrome (MOFAS) is the statewide organization serving as the leading voice and resource on Fetal Alcohol Spectrum Disorders (FASD) in Minnesota. MOFAS provides education and training so FASD is better understood and works to ensure that all women know there is no safe level of alcohol use during pregnancy.

Minnesota PKU Foundation promotes research and the welfare of individuals with PKU and their families. The foundation is comprised of parents, grandparents, health care providers, and other friends of the PKU Community.

Minnesota Spina Bifida Association (MNSBA) exists to increase awareness about Spina Bifida and enhance the lives of those affected by the condition.

PACER Center is a parent training and information center for families of children and youth with all disabilities from birth through 21 years old. At PACER Center, parents will find publications, workshops, and other resources to help make decisions about education, vocational training, employment, and other services for children with disabilities. The Family to Family Health Information Center at PACER provides assistance with accessing and navigating private and public insurance (MA, TEFRA) programs, parent support from multicultural advocates in multiple languages, and information on working effectively with doctors and school professionals.

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Emergency Preparedness for CYSHN

Get Ready, Get Safe: Download and fill out a Disaster Checklist for Parents.

Learn more about individual and family preparedness on the MDH Emergency Preparedness site. Checklists, information, and other resources are listed.

A variety of emergency preparedness and health information can be found on the Minnesota Department of Human Services website. Includes links for Deaf and Hard of Hearing services and resources.

Accessible Emergency Information: “Over the past few years we as Americans have experienced both natural and man made disasters. In an effort to better inform the community the Northeast Texas Public Health District has compiled 18 Emergency Preparedness Topics and formatted the information to be friendly to deaf, blind, and limited sight populations. The information is in video and downloadable document format for public use. There is No Charge for use of the materials posted on this website.”

The Centers for Disease Control and Prevention (CDC) provide nation-wide statistics, reliable resources, and real stories from children who experienced a disaster.

Visit Ready.Gov for tools, games, and other resources for kids, parents, and educators to use. “Disasters affect everyone. And so it takes everyone - youth, parents, and community members - to help prepare.”

Birth Defects Opt-Out Form

Opt-Out form for the Birth Defects Registry (PDF)