- 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?
- 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
- 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?
- 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?
- 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?
- 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 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.
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.
**Remember to use the tips on credible internet searches (above).
See all National Support Groups, Disab/Diag services providers (45) in our database.
For other services related to this condition, browse our Services categories or search our database.