Guide to the Portal

The Medical Home Portal aims to help families, physicians, and others find reliable information and access valuable professional and community resources to improve the care, health, and outcomes of children and youth with special health care needs (CYSHCN). The Portal is unique in addressing primary care clinicians, other professionals, and families and providing information about local service providers and other resources.
To learn more about the Portal, check out the About the Medical Home Portal page. You can also read A Short History of the Medical Home Portal. For a complete list of all Portal pages, see the Site Map. This page provides a technical overview of using the Medical Home Portal site.

Navigating the Portal

Using the Nationwide and Partner States Portal Sites

The Portal’s content is written for a US-wide audience, with very limited state-specific information. However, the Services Directories provide information about “local” providers:
  • The Nationwide site (www.medicalhomeportal.org) includes organizations that provide web-based services, maintain a nationwide network or finder service, or provide services remotely.
  • The States sites (Idaho, Montana, Nevada, Montana, Rhode Island, and Utah) also include information, including links and service providers, specific to that state.
To go to a Portal partner state’s site, select it from the drop-down at the upper left of any page. If you want to return to that state’s site whenever you click a link to the Portal, click “Set __ as my home site” under the state selection menu. You may need to clear your cache for this to work.
We encourage states and regions interested in partnering with the Portal to read the Partnering with the Portal page.

Understanding the Portal’s Menus

The blue horizontal top menu moves you between “tabs” of the Portal. As you scroll down a page, that menu is replaced “breadcrumb trail,” allowing you to jump to the top of the page or to a parent page.
In the Diagnoses & Conditions tab, the modules have left-hand menus that allow you to navigate between content sections within the module. Use the options at the top to collapse or expand section headings.
Other areas of the Portal have a left-hand menu to navigate pages within them. Use the arrow symbols to collapse or expand this menu. For pages with three or more main sections of content (like this one!), the top of the page has jump links to access those sections within the page.

"How To Use the Portal" Videos

You'll find six short How To Use the Medical Home Portal video series on the Medical Home Portal YouTube Channel. They were created in 2016, so some links and pages have changed since these videos were created.

Diagnoses & Conditions Tab

Content under the Diagnoses & Conditions tab is primarily for physicians and other clinical providers.

Modules

Staying current on knowledge, guidelines, and resources related to uncommon or complex conditions is very challenging for providers. The Portal provides focused information about the primary care of children with these conditions and help with addressing related medical and social needs. All Portal Diagnoses & Conditions modules are written and reviewed by experts. Modules are reviewed regularly, typically every two to three years or after a major change to practice guidelines.
The modules follow a similar format and the left-side menu can be used to move between headings. Every module has the same set of topic sections and sub-sections, although not all modules contain every sub-section. For example, the module on Cerebral Palsy includes a sub-section about Complementary and Alternative Medicine, while the module on Spinal Muscular Atrophy includes a sub-section about Dental care, and both include a sub-section about Respiratory concerns.
At the bottom of each module is a list of relevant service categories for that condition, with links to providers in that state’s Services Directory. More information about when different types of service providers might be helpful is also included in the text. There are also a variety of other links and downloadable documents, which may include practice guidelines, clinical tools, and patient education tools.

Additional Pages in the Diagnoses & Conditions Tab

To see how many children with a specific diagnosis might be expected in a primary care practice, go to the Diagnosis Prevalence List and enter the number of patients in your practice. Prevalence figures in this list are sourced from a variety of studies and may not reflect the population of your practice.
The Portal includes modules for 54 Diagnoses & Conditions and more in development. You can see which modules are actively being reviewed or created on the Modules in Revision/Development page. You can also send us Feedback to suggest a diagnosis that you would like to see.

Newborn Disorders Tab

The Newborn Disorders tab is written for primary care clinicians and their teams. It has information about responding to abnormal results of 37 different newborn screening tests. These include conditions tested for via a blood test (heel stick or blood spot), as well as other tests (hearing, etc.). Each page includes a brief description, other names for the condition, codes, symptoms, first treatment steps, related services, and where to find more information, including links to the Portal’s Diagnoses & Conditions modules where available. Pages in this tab are written and reviewed by specialists working with patients and are updated periodically or as needed.

For Parents & Families Tab

The For Parents & Families tab content is written for families, caregivers, and other interested individuals with or without medical training. It includes a wide range of specific and general information. It includes a wide range of specific and general information related to CYSCHN and their families. Where relevant, pages also include links to related & relevant service categories and links to external sites and PDFs from the Medical Home Portal and others. Make sure you are using your state’s Portal site, if available, because some pages include local information and links that display only on specific Portal sites. Pages in the For Parents & Families tab are written and reviewed by medical experts, parent partners, and other professionals.

Finding Information for Parents & Families

The pages in the For Parents & Families tab are organized into areas of related-content, and sometimes into more specific areas. Use the left-hand menu to navigate between content areas or within an area that has multiple parts. Click the arrows to expand or collapse page titles for a sub-area. Some of the largest areas are After a Diagnosis or Problem is Identified, Education and Schools, and Navigating Transitions with Your Child . You can also use the Search bar at the top of the page to search the whole Portal for relevant information.

Diagnoses & Conditions - FAQs

The Diagnoses & Conditions - FAQs area includes information about the diagnoses and conditions found under the Diagnoses & Conditions tab of the Portal. This FAQs are written for parents and structured as questions and answers with an emphasis on those that might arise immediately or shortly after a diagnosis is made. Each of these pages includes links to relevant categories of service providers, including pediatric subspecialists and community resources, that might be relevant in your child’s treatment for this diagnosis. These pages are written by medical professionals and reviewed by parent partners and parents of children with these diagnoses.

For Physicians & Professionals Tab

The For Physicians & Professionals tab is written primarily for a professional audience, including clinicians and other professionals, such as care coordinators and educators. This tab focuses on caring children and youth with special health care needs in the “medical home” model. Pages under this tab are organized into themes, such as Common Issues for CYSHCN, Education & Schools, Feeding & Nutrition, Medical Technology, and Screening & Prevention. All material is written and reviewed by experts working in these fields.

Services Directory Tab

The Services Directory on the Portal’s Nationwide site provides information about organizations that offer web-based services, provide services remotely or through a nationwide network, or offer a provider finder service. The Portal also provides state-specific information and directories of local service providers in our partner states: Idaho, Montana, Nevada, New Mexico, Rhode Island, and Utah. Information about state services is entered and maintained by partner organizations in those states.
Within the Services Directories, services are organized into categories, with service providers appearing in one or more relevant categories. These include medical categories, community resources, and more. Within category pages, service providers are listed by location, with Nationwide providers listed last. You can use the links at the top of the page to access listings for your desired city or town. We welcome you to browse by category, or use the search option at the top of the Services Directory homepage to search by keyword, category, and location. Relevant Service Categories are also listed on pages throughout the Portal, including Diagnoses & Conditions modules, Newborn Disorders pages, and Diagnoses & Conditions - FAQs pages.
We make every effort to keep the information in the directories up to date and accurate. Most state Portal sites’ Service Directories also offer the option to submit a new service provider or suggest an edit to a current service provider. These edits are reviewed by the organizations maintaining the directories. If you know of a new service, or an update to a service, we encourage you to submit the service or change to the relevant state directory.

Other Resources Tab

The Other Resources tab has relevant links and downloads, most of which are referenced on Portal pages. In this tab you can search resources by type, including links to other websites, Tools for the Practice for providers, Patient Education resources, Registries & Studies, and a Bibliography.

Still didn't find it?

The Medical Home Portal continues to grow and change, and we add to and update the site as new information becomes available. Our team of medical professionals, editors, family advocates, and programmers strives to keep the site up to date and build new partnerships with expert authors and reviewers. We encourage you to explore the Portal’s extensive content and then Contact us if you have questions or share your Feedback!

Authors & Reviewers

Last update/revision: July 2019
Current Authors and Reviewers:
Author: Lennea Bower, MA
Authoring history
2009: first version: Alfred N. Romeo, RN, PhDA
AAuthor; CAContributing Author; SASenior Author; RReviewer