Guide to the Portal
The Medical Home Portal (formerly the MedHome Portal) is designed to be a source of specialized information for physicians,
parents, teachers, and other professionals to help them in caring, in a more collaborative manner, for children and youth
with special health care needs (CYSHCN). This page will introduce you to a sample of what is available on the site. See the
Site Map for a list of all the pages.
For Parents & Families
Families of children and youth with special needs are continually searching for more information. To find some trusted sites,
see the Learning About Diagnoses page.
Caring for Children with Chronic Conditions
Often, families of CYSHCN struggle with the daily challenges of Caring for Children with Chronic Conditions. 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 area also contain information about Managing and Coordinating Care, how to keep a Care Notebook, and Financial Supports.
Education & Schools
When children have certain disabilities, schools are required to make accommodations to meet their needs. The Education & Schools pages provide information for families about working with schools.
Transition Issues
The Transition Issues pages help medical providers and families learn more about changes throughout childhood and different services for those
stages so they can be better prepared to deal with the changes before they happen. These pages cover transition across the
life-span starting with Birth to Three. The Transition to Adulthood poses many challenges so these pages contain helpful hints and links for teenages, young adults, and their families such
as information about Employment/Daytime Activities, Guardianship/Estate Planning, and more.
For Physicians & Professionals
The For Physicians & Professionals section/tab has 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 with Special Health Care Needs (CSHCN) 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 and 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 Technology Reviews pages provide specific information about how to choose, use, and maintain medical equipment, like Wheelchairs.
Services & Resources
The Services & 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 & Resources section/tab provides links to over 2000 local Community & Professional Services. 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, contatct your state's CSHCN
program (State MCH & CSHCN Contacts), 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
Sometimes, medical providers see children with diagnoses that are fairly uncommon. The Portal provides brief, specific information
about providing primary care and making sure the 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 physician and want to see how many children with a specific diagnosis you might expect to see in
your practice, 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, most states require a blood test (heel stick or blood spot) to screen for genetic or metabolic
conditions that can cause problems for newborn infants very quickly or later in life. This section has information on 31 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 providers 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!