Families of children with special needs require knowledge, support, and resources to provide the best possible care and opportunities for their child. Subtopics included are:

• Using Health-Related Social Media

Getting the support you need means asking a lot of questions. Some of the common questions you may have are:

• What does this diagnosis mean for my child and their future?
• Are there treatments for my child's condition?
• How can I find information I can trust?
• Where can I find another parent who has a similar situation to talk to?
• What services are available where we live?
• Are there support groups for parents like me?

When your child gets a diagnosis from a healthcare professional, you might feel lost and overwhelmed, but don’t forget that healthcare professionals are on your side and can answer many of your questions. Your healthcare team is there to help you and your child. They will have access to information about your child’s condition if you ask them.

When making an appointment, let them know if you will need extra time to talk about the information and resources you need. This will give them a "heads-up" so they can gather information for you or at least be ready to take extra time. If your child has a rare or uncommon condition, your providers may not have all or the latest information, but you can work with them to find that information or specialists who are more familiar with the condition.

Care coordinators (also known as case managers, service brokers, services coordinators, health navigators, etc.) work to help patients and families find needed services and support and to make the process as straightforward, clear, and helpful as possible. Read our page on Managing and Coordinating Care for more information about these important professionals.

Other parents may offer some of the best information, resources and support. For many parents of children with special needs, learning from someone who has been through what you are experiencing can be very helpful. Often, they have more than just information to offer—like useful services, attentive service providers, tips for unique situations, an ear to listen, and words of support. Families sometimes make lifetime friendships through parent-to-parent connections.

Many states have parent-to-parent programs that were created to make these types of connections, and other organizations that exist in every state, like Family Voices (FVAO) or Health Information(F2F) Center and Parent Training and Information Centers (PTI), help to make these connections.

A variety of public and private organizations are good sources of information. Some, like United Cerebral Palsy or The Epilepsy Foundation, focus on a single condition and will provide information specific to your child's diagnosis. Other organizations, like Family Voices, serve people and families with any disability or another family need. In large enough cities, you will find a network of advocates and services in what may be considered a disability community; you may even want to get involved with some of these efforts. These organizations and people play key roles in helping others navigate the health care and social journey.

To find disability-specific organizations: see National Support Services, Disab/Diag (see NW providers [117]) as a start. You can also do your own search: type your child’s diagnosis and the term "organizations" into your search engine (like Google or Bing), and for places near you, type in your city or state. Disease- or condition-specific organizations’ websites are likely to include links to local organizations and national partners that may be useful.

To find additional organizations in your area contact your state Family-to-Family Health Information Center or Parent Training Information Center:

• National Center for Family - Professional Partnerships (F2F HICs)
• Center for Parent Information and Resources (DOE)

Some Reliable Organizations

Knowing When Health Information is Reliable

Types of Web-Based Health Information