Finding Quality Information

Information and Resources are so helpful in assisting families of children with special needs to navigate a complicated road after a diagnosis. Traveling this road will bring you to many stops where you will need to ask questions and gain knowledge, support, and resource information.

Some of the common questions you may have are:

• What does this diagnosis mean for my child and her future?
• Are there treatments available 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 in our area?
• Are there support groups for parents like me?

It is important to make sure you find safe and credible sources for information regarding your child's diagnosis, treatments, and supports. Here are some examples and tips that may guide you to the information you are seeking.

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

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

The Internet is a great source of up-to-date health statistics and information about treatment options, but the amount of information can be overwhelming and the information you find may not be reliable. To get the most out of the available resources, you need to be a wise consumer and learn to evaluate the reliability of information. The guidelines that follow focus on assessing the reliability of website information, but the questions may also help you determine the quality of information in books, magazines, and other printed material.

How accurate does this information appear?

• Is the material 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 another site or published literature?
• Is it clear who is responsible for content of the site and are their credentials provided?
• Does this information confirm what you have already found on other sites?

How current is the information?

• Do the pages indicate when an article was first posted, and when it was last revised?
• Is there any other indication that the material is kept current?

Does the information appear to be objective?

• Is the material free of advertising, and if not, is commercial content clearly differentiated from the informational content?
• Is this information provided as a public service?

Who is ultimately responsible for the contents of this site?

• Is there a page describing the purpose of the sponsoring organization?
• Is there contact information for the sponsoring organization, including a phone number and postal address?

The answers.
The more of the above listed questions to which you can answer “yes,” the more likely the source contains high quality information. Bookmark sites that you feel are good sources of accurate, current information and visit them often to keep up on the latest news on your child's health condition.

Much information about specific conditions and their care is offered in the Medical Home Portal's "Diagnoses & Conditions" section. Although written primarily for physicians, we hope that families will also take advantage of its information. The menu of the diagnoses for which Modules have been developed can be viewed at Diagnoses & Conditions.

In addition to the Medical Home Portal, the links below can be trusted to offer high quality information on various levels - the first two are best for those just beginning to learn about a diagnosis and the last is for those seeking a more extensive understanding of the condition.

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

When your child receives 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 with special health care needs, and they more than likely will have access to information about your child’s condition if you ask them.

When making an appointment with a healthcare professional, let them know you will need extra time to discuss your information and resource needs regarding your child's diagnosis. This will give them a "heads up" so they can gather information for you or at least be prepared to take that extra time to assist you.

The term "care coordination" is used interchangeably throughout many different systems and organizations. You may have heard the terms case manager, service broker or services coordinator. Regardless of the term, the concept of care coordination is to help families link to supports and services to meet their individualized needs.

Who uses care coordinators in their agencies?
Care coordinators are used throughout the healthcare arena in many different ways. Their expertise depends on the role, type of care coordination offered by the organization and the responsibilities delegated to the individual. Clinical experience is imperative and the greatest asset is knowledge of community resources and how to access them. Examples of the various roles of a care coordinator:

• Medical Home: (Medical focus, family approach) - An essential component of the medical home team. Works with the primary care physicians and family advocates to facilitate access to services, promote continuity of care, provide family support, improve functional outcomes and maximize efficient and effective use of resources.
• Healthcare Payer or Insurance: Validates eligibility for insurance and benefits limitations, exclusions, co-payments and deductibles. May assist with exploring other alternative funding programs.
• Home Health Agency: Explores options and other available services within the agency and determines stability or readiness for the next level of care or discharge. Provides community resources and patient education.
• Home Health Agency: A care coordinator will explore options and available services within the agency and determine your child’s stability or readiness for the next level of care or discharge. He may provide community resources and patient education.
• Hospital-based Care Coordinator / Discharge Planner: Functions as an integral part of the healthcare team and works collaboratively with other care coordinators, the family and other providers on details for discharge.
• Government for Administration of Program: Determines eligibility for government programs, works closely with the family, other health care providers and the care coordinators in meeting the needs of the child and family. Authorizes services and provide referrals and resources.

Parent connections can provide some of the most valuable information, resources and support. For many parents of children with special needs, it is important to connect with someone who truly understands, and because they have had similar experiences, other parents of children with special needs are often able to help you navigate through information and services they have used or had experience with. Often they have more than just information to offer – like tips for unique situations, an ear to listen, and words of support and real understanding. Many times families make lifetime friendships through parent-to-parent connections.

Many states have parent-to-parent programs that were created specifically 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 informally.

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

• Parent to Parent USA
• National Center for Family - Professional Partnerships (F2F HICs)
• Parent Technical Assistance Centers

Disability organizations are another good source of information. Some organizations will specialize in one particular 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 individuals and families with any disability. It is important to know that you will find information and support throughout the entire disability community, and may even want to be involved with some of these efforts. There are many organizations out there to assist you, and they all play a different role in the navigation of this journey.

To find disability-specific organizations: see National Support Groups, Disability/Diagnosis Specific below, and conduct 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.

**Remember to use the tips on credible internet searches (above).

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 a challenge for a parent of a child with a disability. Don't feel like you are alone in this. There are many of us 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 supports, and the road is not so hard to navigate when you are not alone.