Finding Quality Information

Information and resources are so helpful in guiding families of children with special needs to find the things they need. As your child grows you will need to ask questions to gain knowledge, seek support, and find quality information.

Some of the common questions you may have are:

• What does this diagnosis mean for my child and her 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?

It is vital to make sure you find safe and trusted sources for information about your child's diagnosis, treatments, and supports. Here are some tips to help guide you to the information you are seeking.

You have found a very useful resource in the Medical Home Portal. This website has reliable information and resources to help parents and doctors care for children and youth with special health care needs (CYSHCN). Parents will find information on the Portal like:

• Learning about your child's diagnosis
• Caring for your child's special needs
• Working with schools and educators
• Using care notebooks and finding needed forms
• Working through your child's transitions
• And much more

The Web is a great source of up-to-date health statistics and information about treatment. However, there can be too much information available and what you find may not be good. To get the most out of the resources you find, check the information to find out how accurate it is. The guidelines that follow are about the reliability of information on websites, but the questions may also help you decide the quality of information in books and magazines.

How accurate does this information appear?

• Is it free of spelling, grammatical, or typographical errors? These types of errors are a clue to a lack of quality control on the site.
• Are the sources of information listed so that you could cross-reference them from other sites or published items?
• Is it clear who is responsible for content of the site and are their credentials provided?
• Does this information back up what you have found on other sites?

How up to date is the information?

• Do the pages show when an article was first posted, and when it was last revised?
• Is there any other sign that the content is kept up to date?

Does the information appear to be fair?

• Is it free of advertising, and if not, are the ads clearly not linked to the page's information?
• Is this information supplied as a public service?

Who is responsible for the content of this site?

• Is there a page about the purpose of the site's organization?
• Is there contact information for the organization, with a phone number and postal address?

The answers.
The more of these you can answer “yes” to, the more likely the source has high quality information. Bookmark sites that you feel are good sources of true, up-to-date information and visit them often to keep up on the latest news on your child's health issue.

Information about specific conditions and their care is offered in the Medical Home Portal's "Diagnoses & Conditions" section. Although written for doctors, we hope that parents and caregivers will also use this information. The list of the diagnoses can be viewed at Diagnoses & Conditions.

The links below can also be trusted to offer high quality information on many levels - the first two are best for those just starting to learn about a diagnosis and the last is for those seeking a more extensive understanding of the diagnosis.

• MedlinePlus Understanding Medical Words
• MedlinePlus Medical Encyclopedia
• Healthy Children (AAP)

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 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.

The term "care coordination" is used in many systems and organizations. You may have heard the terms case manager, service broker, or services coordinator. No matter what the term, care coordination is meant to help families connect to support and services to meet their individual needs.

Where are care coordinators located?
Care coordinators are used throughout healthcare in many different ways. Their skill depends on the role, type of care coordination offered by the office where they work. Clinical experience is needed and the greatest asset is knowledge of resources and how to use them. Roles of a care coordinator could be:

• Medical Home: (Medical focus, family approach) - a vital piece of the medical home team.
  • Works with the primary care physicians and family advocates to help with access to services, provide family support and maximize use of resources .
• Healthcare Payer or Insurance: Validates eligibility for insurance and benefits limitations, exclusions, co-payments and deductibles.
  • May aid in finding other funding programs .
• Home Health Agency: Explores choices and other services within the agency and looks at readiness for the next level of care or discharge.
  • Provides resources and patient training .
• Hospital-based Care Coordinator / Discharge Planner: Works as part of the healthcare team and collaboratively with other care coordinators, the family and other providers on discharge plan.
• Government Program Administrator: Determines eligibility for government programs, works closely with the family, other health care providers and the care coordinators to meet the needs of the child.
  • Approves services and provides referrals and resources.

Parent connections can give you some of the best information, resources and support. For many parents of children with special needs, it is of great value to meet someone who truly knows what you are going through. Because they have had similar experiences, other parents of children with special needs are often able to give you information and services they have used. Often they have more than just information to offer – like tips for unique situations, an ear to listen, and words of support. Many times families 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 state organizations like the Family to Family Health Information Center (F2F HIC) or the Parent Training and Information Centers help to make these connections. To find a parent-to-parent connection in your state go to .

To find a parent-to-parent connection in your state go to:

• Parent to Parent USA
• National Center for Family - Professional Partnerships (F2F HICs)
• PACER Center

Disability organizations are a good source of information. Some organizations will focus on one single condition, like "United Cerebral Palsy" or "The Epilepsy Foundation," and are very helpful in finding information specific to your child's diagnosis. Other organizations serve people and families with any disability.

It is helpful to know that you will find information and support throughout the disability community, and may even want to be involved with some of these efforts. There are many organizations out there to help you, and they all play a role in the navigation of this journey

To find disability-specific organizations: see National Support Groups, Disability/Diagnosis Specific below, and run your own search: type your child’s diagnosis and "organizations" into your search engine, and for places near you, type in your city or state.

To find disability 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)

Finding information can be hard for a parent of a child with a disability. Don't feel like you are alone in this. There are many parents and caregivers out there just like you. By making these connections with organizations, health care providers, and other parents you will find that there is a world of support, and it is easier when you are not alone.