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Caring for Children with Chronic Conditions
What you will find in the pages of this section
Here we hope to provide parents and other family members with knowledge, guidance, tools, and support as they strive to care
for and about their child with special health care needs, their other children, and their extended families. We hope that
you will see your physician(s) and other health care providers as partners in this process, in the Medical Home model (see
About Medical Home)
A New (or Old) Diagnosis - "You Are Not Alone"
Responding to the diagnosis of a chronic or disabling condition in your child, and managing the many and ogoing emotions associated with it and its impact, can be difficult. Some insights and guidance are provided here.
Responding to the diagnosis of a chronic or disabling condition in your child, and managing the many and ogoing emotions associated with it and its impact, can be difficult. Some insights and guidance are provided here.
Siblings of Special Needs Children
The brothers and sisters of children with special health care needs may feel left out or frustrated that thier sibling is getting more of the parents' attention and time. This page provides tips for talking to your children without disabilities and helping them adjust to their sibling's needs and your family's routines.
The brothers and sisters of children with special health care needs may feel left out or frustrated that thier sibling is getting more of the parents' attention and time. This page provides tips for talking to your children without disabilities and helping them adjust to their sibling's needs and your family's routines.
Managing and Coordinating Care
Special needs children often see many different health care providers. This section is designed to help parents become an active part of their child's Medical Home team. Effective communication, accurate record-keeping, and preparing for medical emergencies are some of the topics covered here. Future topics will include: Choosing a Doctor for your Child, and Managing Finances During Crises.
Special needs children often see many different health care providers. This section is designed to help parents become an active part of their child's Medical Home team. Effective communication, accurate record-keeping, and preparing for medical emergencies are some of the topics covered here. Future topics will include: Choosing a Doctor for your Child, and Managing Finances During Crises.
Supports for CYSHCN and Their Families
Taking care of a special needs child can be an overwhelming job. This section offers information on a variety of resources to help support families in their efforts to provide the best care possible for their child. Future topics will include: Quality of Life, Legal Issues, Care of the Caregiver, and other health related issues.
Taking care of a special needs child can be an overwhelming job. This section offers information on a variety of resources to help support families in their efforts to provide the best care possible for their child. Future topics will include: Quality of Life, Legal Issues, Care of the Caregiver, and other health related issues.
Advocacy
Many parents have little experience being advocates when they first find out that their child(ren) have special health care needs. This page helps parents learn about advocacy and advocating for their child, in partnership with their medical homes, service providers, schools, insurance providers, and government agencies.
Many parents have little experience being advocates when they first find out that their child(ren) have special health care needs. This page helps parents learn about advocacy and advocating for their child, in partnership with their medical homes, service providers, schools, insurance providers, and government agencies.
Terms/Acronyms/Definitions
When you learn that your child has special needs or has developmental delays, you will likely hear many new terms and acronyms from your doctor, service providers, and insurance provider. This page gives definitions for common terms and provides links to selected medical dictionaries and glossaries to help you learn about other new terms.
When you learn that your child has special needs or has developmental delays, you will likely hear many new terms and acronyms from your doctor, service providers, and insurance provider. This page gives definitions for common terms and provides links to selected medical dictionaries and glossaries to help you learn about other new terms.
Forms
These forms can be helpful as you try to keep track of your child's doctors, appointments, medications, treatments, and more.
These forms can be helpful as you try to keep track of your child's doctors, appointments, medications, treatments, and more.
Other Resources
Most parents of children and youth with special needs search for web sites that explain medical conditions, offer support groups, or help them find more services. This page provides links to selected national and local organizations that can help parents of children and youth with special needs.
Most parents of children and youth with special needs search for web sites that explain medical conditions, offer support groups, or help them find more services. This page provides links to selected national and local organizations that can help parents of children and youth with special needs.