There are a wide variety of places to get information and help, depending on where you live. Below are a few places you can reach out to for help and information.
- Primary or Specialty Care Providers—Ask for a care manager or care coordinator if one is available. Their job is to help identify resources and support within your state and local community. A care manager or care coordinator can help with more than just medical issues related to raising a child with complex medical needs. Helping to connect you with resources is also part of their job. For more information on care coordination, visit the Agency for Healthcare Research and Quality’s website https://www.ahrq.gov/ncepcr/care/coordination.html
- Children’s Hospitals—Besides medical care, hospitals may offer family support groups, social workers, and more. Some hospitals have family centers for support, information, and resources. To find a Children’s Hospital near you, you can search the Children’s Hospital Association directory at https://www.childrenshospitals.org/hospital-directory.
- Early Intervention—These programs are sometimes referred to as “Birth to Three.” Every state offers some type of program to babies and toddlers if they have delays or specific health conditions. An evaluation will be done to determine if your child is eligible. There are a variety of different services they may cover. Visit the CDC’s website to locate Early Intervention Contact information by each state. https://www.cdc.gov/ncbddd/actearly/parents/state-text.html.
- Mental Health and Substance Abuse —These centers offer community-based services for individuals with mental health and substance abuse disorders. FindTreatment.gov offers a directory for each state’s single state agency that oversees substance use and mental health treatment programs. These agencies can provide additional information about facility licensing and accreditation practices and procedures, and treatment services offered in your state. https://findtreatment.gov/state-agencies.
- Agencies for Intellectual/Developmental Disabilities (I/DD) – To find your state’s agency for services for Intellectual/Developmental Disabilities, visit the National Association of State Directors of Developmental Disabilities Services website directory. https://www.nasddds.org/state-agencies/.
- Parent-to-Parent—These organizations provide emotional support to families of children who have special needs. They match parents with a fellow parent who has a child with the same special healthcare need, disability, or mental health concern. This allows the parent or family to have an experienced, trained contact for sharing information, receiving support, and creating new friendships. Visit www.p2pusa.org.
- Baby’s First Test—A website that brings together resources and information about newborn screening and baby health for parents and health care professionals. Visit www.babysfirsttest.org
- Genetic Alliance—An organization promoting good health for individuals with genetic conditions. They provide information on health, disease intervention and ways to participate in research through various websites including Genes for Life and Disease InfoSearch. Visit www.geneticalliance.org.
- Family-to-Family Health Information Center—These federally-funded, family-led organizations provide support, information, education, and training to families of children with special health care needs. There is a Family-to-Family Health Information Center in each state. Often they work together with Family Voices (see below). To locate your state or territory’s Family to Family Health Information Center, go to https://familyvoices.org/affiliates/.
- Family Voices—A national network of state-specific organizations that promote quality health care for all children and youth, particularly those with special health care needs. They make sure the family voice is included to improve health care programs and policies. Visit www.familyvoices.org.
- Disease-specific foundations and organizations—Look for a large, well-established group that can provide information about your child’s condition and support for your family. Some organizations have local, regional, or national conferences. These organizations may also offer information on research and clinical trials, if available. NORD’s Organizational Database offers a listing of rare disease organizations and resources that can provide free information, support, and services. https://rarediseases.org/patient-organizations/.
Evaluating Resources
You may find yourself overwhelmed by the constant flow of health information from many sources, both reliable and unreliable. Some of the information is good, and some of it isn’t. You need to filter out the irrelevant or inaccurate information so you get good health information that can have a positive impact on your child’s life.
One resource available to help you is called “Trust It or Trash It” from Genetic Alliance. This tool helps you think critically about the quality of health information. It teaches you to ask yourself three simple questions:
- Who said it?
- When did they say it?
- How did they know?
This gives families a way to review health information, especially from online sources. It is natural to want to believe that information out there can help your child, but it is important not to let that hope cloud your judgement. The tool is available online on the Genetic Alliance’s website at: www.trustortrash.org
