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For Parents & Families

Welcome to the Medical Home Portal!

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Our goal in this section of the Medical Home Portal is to help you learn how to better care for your child with chronic and complex conditions, and become a more effective partner in your child’s care. Effective partnering with physicians and other health care professionals are the foundation of the Medical Home approach to care (see About Medical Home to learn more).
The following “For Parents and Families” areas focus on various points in the journey and aspects of assuring the best outcomes for your child.
Before a Diagnosis
This page provides an introduction to the processes involved in recognizing a problem and then seeking its cause or diagnosis.
After a Diagnosis or Problem is Identified
This section of the Portal has content for families of children with a new diagnosis. We hope to help with information, including: knowing you are not alone, working with healthcare providers and Medical Homes, and Caring for Children with Special Health Care Needs. Filling prescriptions, working with the insurance company, or simply keeping up with your child—dealing with daily life is often overwhelming. Find tools and suggestions for getting organized and Managing and Coordinating Care, advocating for your child, planning for the future, and taking an occasional break from it all. This section also includes information on adoption, foster care, complementary and alternative medicine, and advocacy.
Responding to a Diagnosis
Whether your child has been recently diagnosed, or you are looking for the latest information about your child’s care, this page will help you find reliable resources and information.
Early Services, 0-5 Years
Research shows that early discovery, diagnosis, and treatment of children with developmental delays or disabilities lead to improved outcomes in developmental skills, academic performance, and social skills. This section provides information on the Early Intervention Part C program and services, additional government and private services, and home visiting programs for children 0 – 5 years with special health care needs.
Education and Schools
Schools can provide necessary services and support for children with special health care needs. Learn the terms, laws, and processes so you can work more effectively with schools to provide the best educational experience for your child.
Navigating Transitions With Your Child
Children, youth, teens, young adults, and their families will find answers to some of their questions about growing up and becoming independent, as well as suggestions for preparing for these changes. A School Transitions section is included to help students and families anticipate the challenges and get the most out of each phase of education.
Financing Your Child's Healthcare
Caring for a child with special health care needs can be financially overwhelming. This page may provide some information and resources that can help with your child’s health care costs.
Assistive Technology
Children with special needs or disabilities may benefit from a variety of assistive technology. On this page we offer an overview of available types of AT, information to guide selection of AT, and resources to help you find what you need.
Taking Care of Yourself and Your Family
When a child is diagnosed with a disability, chronic condition, or special health care need, it can be difficult to accept and understand. It can profoundly affect the whole family. This section offers information about the reactions, feelings, and needs that are part of this process for family members.
Legal Issues
There are a variety of laws and legal situations that families with CSHCN should be aware of. This section provides some brief direction on guardianship, estate planning, special needs trusts, and divorce as well as laws that protect and extend benefits to children with special healthcare needs.
Diagnoses & Conditions - FAQs
This section is written for parents and other family members of children with the disabilities and diagnoses listed in our Diagnoses & Conditions section. It provides answers to some of the common questions that parents have about these conditions, along with links to other relevant high quality web sites.

Resources

Information & Support

For Professionals

A Request for a Letter of Medical Necessity(PDF Document 33 KB)
A simple, one-page form for parents to fill out that helps the physician write a letter of medical necessity.

For Parents and Patients

Care Notebook
Instructions, ideas, and templates for building your own care notebook; from the American Academy of Pediatrics Medical Home Implementation.

Authors

Compiler: Information compiled by Medical Home Portal authors and staff
Content Last Updated: 1/2014