Family Info & Resources

Information and Resources for Families

Children and Youth with Special Health Needs Navigator The CYSHN Navigator is a helpful tool for family members, human service professionals, and providers. Topics to explore include mental health, support for parents, transition to adult care - and much more!

Family–to–family Support

Family support and services from Children’s Hospitals and Clinics of Minnesota

Minnesota Family Voices - Parent to Parent matches families of children or youth with special health care needs or disabilities with an experienced Volunteer Support Parent who has received specialized training. Parent to Parent is a valuable source of assistance and information for parents because they can talk with an experienced parent who really understands.

The Congenital Adrenal Hyperplasia (CAH) Family Support Group provides support to parents of children born with CAH; it meets twice a year. Find out more on this CAH fact sheet (PDF).

Parents can also join a private Facebook group for networking and support. Send an email to Health.CAHFamilySupport@state.mn.us to join.

To join CAH Facebook email health.cahfamilysupport@state.mn.us include your name, why you would like to join and the email you use for facebook.

Minnesota Fatty Acid Oxidation Disorders (FAOD) and Organic Acidemia (OA) Family Support Group provides support to parents of children born with FAOD/OA, adults living with a condition, and family caregivers. The groups meet twice a year. Find more information on this FAOD/OA fact sheet (PDF).

Parents can also join a private Facebook group for networking and support. Send an email to Health.FAODOASupport@state.mn.us to join.

To join FAODOA Facebook email health.cahfamilysupport@state.mn.us include your name, why you would like to join and the email you use for facebook.

Financial and Other Services

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 HealthCare.gov

MNSure is Minnesota's marketplace where individuals, families and small businesses can shop, compare and choose health insurance coverage that meets their needs. MNsure is the only place you can qualify for financial help that can lower the cost of your monthly insurance premium.

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

Local Public Health (LPH) Departments can help answer your questions and assist you 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.

Help Me Grow is an interagency initiative of the State of Minnesota (Departments of Education, Health and Human Services) partnering with local service agencies to provide resources about the development of young children for parents and professionals. These resources include information on developmental milestones, YouTube videos, caregiver strategies to support development, screening and evaluation, and how to talk about developmental concerns.

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

Family Health History Resources and Tools

Knowing about diseases, conditions, and other health-related things that run in your family is very important - we call it your family health history. This information can be shared with other family members and health care providers. These resources from Genetic Alliance are designed to help you learn more about gathering and using family health history to improve health.

Organizations of Interest

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.

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.

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.

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.

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.

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.

Accessible Emergency Information: The Northeast Texas Public Health District has collected 18 emergency preparedness topics and formatted videos and documents information to be friendly to deaf, blind, and limited sight populations.

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)