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Finding Quality Information

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Families of children with special needs require knowledge, support, and resources to provide the best possible care and opportunities for their child. This means asking a lot of questions.
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?
Below are some tips to help guide you to individuals and organizations that can answer your questions and provide the support you and your family need.

Healthcare Professionals

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

Care coordinators (also known as case managers, service brokers, services coordinators, health navigators, etc.) aim to help patients and families find needed services and support and to make the process as straightforward, clear, and helpful as possible.
Where are care coordinators located?
Care coordinators may be available in your primary care or specialty physicians’ offices or a hospital, or through an insurer, public health program, or non-profit organization. Good care coordination includes a knowledge of available resources and how to use them, and skill at listening to families and understanding their needs. Roles of a care coordinator could be:
  • In your Medical Home (primary care or specialist office; medical focus, family approach): works with the physicians and family advocates to help with access to services, provides family support, and maximizes use of resources.
  • At your Health Care Payer or Insurance: verifies eligibility for insurance and benefits limitations, exclusions, co-payments and deductibles; assists with special situations or appeals; may aid in finding other funding programs.
  • With your 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.
  • Working as a Hospital-based Care Coordinator/Discharge Planner: works as part of the health care team and collaboratively with other care coordinators, the family, and other providers on discharge planning and follow-up services.
  • Working as a Government Program Administrator (e.g., Medicaid, Social Security): determines eligibility for government programs, works closely with the family, other health care providers, and care coordinators to meet the needs of the child. Approves services and provides referrals and resources.

Parent-to-Parent Connections

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-to-Family Health Information Centers List and Parent Training and Information Centers (PTI), help to make these connections.

Public and Private Organizations

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 UT providers [101]) as a start. You can also do your own search: type your child’s diagnosis and the term "organizations" into your search engine, 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:

Some Reliable Organizations

Below are listed some of the many websites that provide trustworthy information about many conditions and may also provide links to other reliable sources of information and support.
In general, the national organizations or foundations for specific conditions offer reliable information and links to valuable resources. A few examples are:
Each of the Medical Home Portal’s pages provides links to other sources of reliable information that are specific to the condition or topic discussed.

Online Medical Information

Knowing When Health Information is Reliable

The Web is a great source of up-to-date health statistics and information about treatment. However, there can be too much information and what you find may not be reliable. To get the most out of the resources you find, check the website and its information to evaluate how trustworthy it is. Bookmark sites that you feel are good sources of accurate, up-to-date information and visit them often to keep up on the latest news on your child's health issue. The following questions focus on the reliability of information on websites, but they may also help you determine the quality of information in books and magazines.
How accurate does this information appear?
  • Is the site free of spelling, grammatical, or typographical errors? These are a clue to a lack of quality control on the site.
  • Are the sources of information listed so that you could confirm the information from elsewhere?
  • Is the information consistent with information from other websites, your health care provider, or other trusted sources?
How up to date is the information?
  • Do the pages show when an article was first posted, and when it was last revised or updated?
  • Is there recent information on the page indicating that it was written or updated recently?
  • If the information is older, you may want to look at other sites for recent improvements or research.
  • Does the page fail to mention relevant information that you are aware of, such as new research findings or changes in treatment recommendations?
Does the information appear to be fair and unbiased?
  • Is it free of advertising?
    • If the site includes ads, are the ads clearly unrelated to the page's information?
    • If there are “sponsored posts” or compensation for product reviews, is that information clearly labeled?
  • Does the site clearing provide information about its funding and related policies?
    • Is the information supplied as a public service?
    • Are there financial disclosures for any advertising?
    • Is the site’s funding source obvious?
Who wrote the information?
  • Is it clear who wrote and reviewed the information, especially medical information?
  • What is the author’s expertise (medical credentials, hands-on professional experience)?
  • If information is anecdotal or written by a non-expert, what is the intent and experience of the author?
  • If the information comes from a for-profit organization, such as a drug or device manufacturer, what is the purpose of sharing the information?
  • Beware of bias if you find questions about injury or harm or links to lawyers.
Who is responsible for the content of this site?
  • Does the “About” or other page explain the purposes of the site and its sponsoring organization?
  • Is there contact information for the organization, with a phone number and postal address?
To what kinds of sites does the site link and who links to the site?
  • Does the site provide clear information about how they review and select links to external sites?
  • Do other sources you trust, such as government agencies, reputable non-profits, and medical providers link to this site?

Types of Web-Based Health Information

Web-based resources include sites that publish articles and other resources related to one or more health topics. Some focus on a specific symptom or diagnosis while others cover a variety of related diagnoses or include information about a wide variety of health topics. Some sites focus exclusively on health while others address a variety of health- and advocacy-related topics. See the Resources section of this page for some suggestions of additional sites to check out.
Blogs (originally called weblogs) are typically formatted as a series of short articles or posts around a related theme. Blogs may be part of a larger professional website or may be stand-alone sites created by an individual or group. A number of popular blogs are written by families of children with special health care needs who are sharing their journey.
Social media is also a popular tool for finding health-related information and building a community. If you plan to use social media, be sure to check out our page on Using Health-Related Social Media.

Resources

Information & Support

For Parents and Patients

Genetic and Rare Diseases Information Center (GARD)
GARD provides access to experienced information specialists with current and accurate information - in both English and Spanish. Created in 2002 by the National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases Research (ORDR) - two agencies at the National Institutes of Health (NIH).

Genetics Home Reference (NLM)
Sponsored by the National Library of Medicine, this site provides information about genetic conditions for patients and families; also provides general infomation about genes, chromosomes, genetic mutations, resources related to genetics, and a glossary of genetic terms.

Healthy Children (AAP)
Offers information and advice about child development, health topics, safety and injury prevention, various medical conditions and educational issues, and parenting; American Academy of Pediatrics.

KidsHealth
KidsHealth is the largest and most-visited site on the web, providing doctor-approved health information about children from before birth through adolescence. This site offers numerous easy-to-read articles on kids' health, written for parents, teens and kids.

Mayo Clinic: Patient Care and Health Information
Introductory information about a wide variety of health conditions; from the Mayo Clinic

MedlinePlus Medical Encyclopedia
From the National Library of Medicine and A.D.A.M.; a comprehensive medical encyclopedia aimed at consumers, with lots of photographs and illustrations

MedlinePlus Understanding Medical Words
Tutorial created by the National Library of Medicine to learn about medical words with examples.

National Organization of Rare Disorders, Patient Information (NORD)
NORD has a dedicated staff of information specialists to answer your questions about patient resources, networking opportunities, clinical trials and more.

Orphanet
Orphanet is a consortium involving over 40 countries and coordinated in France to provide a portal for information about rare diseases and orphan drugs.

Services for Patients & Families in Utah (UT)

For services not listed above, browse our Services categories or search our database.

* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

Authors & Reviewers

Last update/revision: January 2019
Current Authors and Reviewers:
Authors: Lennea Bower, MA
Mindy Tueller, MS
Tina Persels
Reviewers: Shena McAuliffe, MFA
Gina Pola-Money