Guide to the Portal

The Medical Home Portal is a source of specialized information for physicians, parents, teachers, and other professionals to help them care for and about children and youth with special health care needs (CYSHCN) and to collaborate on their behalf. The Portal is unique in offering information for both families and professionals (particularly Medical Home teams) and in providing information about relevant local services in our partner states (see the drop-down at the upper left of each page). See the Site Map for a list of all the pages.

How To Use the Portal

Six short videos have been development to help families, medical homes and others use the Portal. Find the How To Use the Medical Home Portal video series on the Medical Home Portal YouTube Channel.

For Parents & Families

Families of children and youth with special needs often search for information to help them understand and care for their children's condition(s). To find some trusted sites, see the Responding to a Diagnosis page.

Caring for Children with Chronic Conditions

Often, families of CYSHCN struggle with the daily challenges of Caring for Children with Special Health Care Needs. If your child was just diagnosed with a condition, see A New (or Old) Diagnosis - "You Are Not Alone" to learn more about common reactions. The pages in this section also contain information about Managing and Coordinating Care, how to keep a Care Notebook, and Financing Your Child's Healthcare.

Education & Schools

When children have certain disabilities, schools are required to make accommodations to meet their needs. The School Types and Options pages provide information for families about working with schools.

Transition Issues

The Navigating Transitions with Your Child pages help families learn more about changes throughout childhood and different services for each stage so they can be better prepared to deal with the changes. These pages cover transition across the life-span starting with Early Services, 0-5 Years. Transition to Adulthood poses many challenges and these pages contain helpful hints and links for teenagers, young adults, and their families, including information about Employment/Daytime Activities, Guardianship/Estate Planning, and more.

For Physicians & Professionals

The For Physicians & Professionals section offers information to help build a better medical home, screen for medical problems using the latest tools, learn about medical devices, and help children get the most from their school experience.

Building a Medical Home

The About Children and Youth with Special Health Care Needs (CYSHCN) page provides information about CYSHCN including data about the number of CYSHCN in individual states. The Care Coordination page offers medical homes and families ideas and tools for improving the coordination of care among several providers.

Screening and Prevention

The Screening & Prevention pages provide best-practice information so medical providers can learn about the latest tools and techniques to more effectively do screenings, like Developmental Screening, and care for children if a problem is found.

Technology Reviews

Occasionally, children need medical devices or other equipment to help them deal with a condition. The Medical Technology pages provide specific information about how to choose, use, and maintain medical equipment, like Wheelchairs and Adapted Strollers.

Services & Resources

The Other Resources tab/section provides access to the thousands of services, external links, Tools for the Practice for providers, Patient Education resources, and citations/articles that are contained in the Portal's database.

Community & Professional Services

In addition to schools, other community organizations work with children with special needs to help them be as successful as possible. Government agencies, nonprofit organizations, allied health providers, and medical specialists are available to serve children and families. The Services Directory section provides links to many local service providers. Families and providers can search through the list of services to find the help that they need.
In addition to searching the list, these services are integrated directly into the content of the Diagnosis Modules and other pages. For a few examples, see Prader-Willi Syndrome, Treatment & Management; Tourette Syndrome, Services & Other Resources; and Maple Syrup Urine Disease. While most of the services are for Utah, we provide some genetics-related services for a few states. To change the services listings for a different state, select a state in the drop-down menu in the top, left area of any page, directly under the Medical Home Portal logo. To find out more about listing your state's services on the Portal, contact your state's CSHCN program (State Title V Snapshots), AAP Chapter (American Academy of Pediatrics Chapter List), or 211 provider.

More Resources

There are other pages in this section to help you find information in our database. Remember seeing something, but you can't find it now, like the protocol for evaluating drug endangered children? Try doing a search for links to files and web sites in Information & Support or for citations/articles in Bibliography.

Diagnoses & Conditions

Clinicians often see children with fairly uncommon diagnoses – staying current on all of these is very difficult. The Portal provides brief, specific information about the primary care of these conditions and making sure that related medical and social issues are met. For example, the module on Cerebral Palsy provides information about the diagnosis, coding for billing, monitoring nutrition, finding local services, and much more. If you are a primary care clinician and want to see how many children with a specific diagnosis you might expect to have, see the Diagnosis Prevalence List page and enter the number of patients in your practice. If you don't see the diagnosis you are looking for, visit our Modules in Revision/Development page to see if we currently have medical specialists writing a new Module or send us your Feedback to let us know what we should write next.

Newborn Disorders

When babies are first born, all states require a blood test (heel stick or blood spot) to screen for genetic or metabolic conditions that can cause problems for newborn infants or later in life. This section has information on 34 different Newborn Disorders including a brief description, other names, codes, symptoms, first treatment steps, related services, and where to find more information.

Still didn't find it?

The Medical Home Portal is a continually growing and changing web site. As clinicians and families have new questions and new information is learned, the Portal staff write new pages to address those needs. This effort to provide the latest and most accurate information possible requires ongoing efforts by the Development Team (doctors, nurses, librarians, family advocates, and computer programmers) and the building of new partnerships with experts to write and review medical content. We encourage you to explore the many pages of the Portal, Contact us if you have questions so we can contact you personally, and share your Feedback with us!

Authors & Reviewers

Initial publication: July 2008; last update/revision: December 2013
Current Authors and Reviewers:
Author: Alfred N. Romeo, RN, PhD