Patient and Family Resources

Ongoing Support Resources

"A family without information cannot take responsibility and feels helpless; a family who is given information cannot help but to be empowered and take responsibility." - Family Voices, Utah 

Cincinnati Children's wants to empower you with information and resources so that you can best care, and advocate, for your child.

We offer a comprehensive compilation of resources in the Southwest Ohio area. Resources unique to Kentucky and Indiana are also featured, as well as national and international website links.

The Ongoing Support Resources provide comprehensive information and support for patients, families, and healthcare providers.

Many of the resources relate to caring for someone with special/complex health care needs.

These resources are primarily organized by categories, then subdivided into topics. Click on each of the categories on the left to find more specific topics.

You can also use the search box on each page to type keywords that describe the subject or resource you are trying to locate.

The information, resources and services needed by a patient or family may not always be specific to a particular condition or disease. This means that there is information on almost every one of the sections of this resource directory that may benefit you. We encourage you to take some time and check out other topics besides the one that brought you here.

There are many acronyms and phrases used to describe children who have complex or special health care needs. CMC stands for "Children with Medical Complexity". CYSHCN stands for "Children and Youth with Special Health Care Needs". Here are some resources that provide definitions, descriptions and guidance.

Cincinnati Children's services and resources:

• Caring for a Medically Complex Child: Your Resource Checklist

Additional Resources:

• Anatomy of a Special Needs Child
• Children and Youth with Special Health Care Needs (CYSHCN) by Health Resources & Services Administration (HRSA)
• Children with Medical Complexity by American Academy of Pediatrics (AAP)
  • Recognition and Management of Medical Complexity by AAP Pediatrics Journal
• Children's Special Health Care Services (CSHCS) by Indiana Department of Health
• Office for Children with Special Health Care Needs (OCSHCN) by Kentucky CHFS
• Ohio's System of Support for People with Disabilities and Their Families by OCALI

A medical home is not a building, house, or hospital, but rather an approach to providing comprehensive primary care. Determining a medical home can be helpful in organizing and coordinating health care and support resources.

• AAP Healthy Children
  • Special Health Needs: Non-Medical Necessities Matter, Too
• Institute for Patient- and Family-Centered Care
• National Resource Center for Patient / Family-Centered Medical Home
  • Tools and Resources for Medical Home Implementation
    • Medical Home Resources for Families and Caregivers

Health homes were created by the Affordable Care Act of 2010. They coordinate care for people with Medicaid who have chronic health conditions.

• Health Home Information Resource Center by Centers for Medicare & Medicaid Services (CMS)
  
  • Health Homes
• Medicaid Services Investment and Accountability Act of 2019, Section 3, provides information regarding the "State option to provide coordinated care through a health home for children with medically complex conditions".

It can be difficult to go through various stages in life. Those with special healthcare needs will have even more challenges.

We can help you navigate these life stages, so you can plan for current and future needs.

• Ages and Stages from the American Academy of Pediatrics (AAP)
• Exploring the Life Stages from Charting the Lifecourse Nexus
• Life Map by the Ohio Association of County Boards (OACB)

To assist physicians and caregivers of children with specialized healthcare needs, we provide the following tools to keep you organized. These forms and lists can be downloaded and printed, for future reference.

• All About Me Questionnaire (.pdf) / All About Me Questionnaire (Word) describes your child's likes, dislikes, developmental abilities and behavioral challenges. You can download and write on the .pdf or download and type directly on the Word version.
• National Center for Medical Home Initiatives has examples of care notebooks to keep track of important papers.
• Social Assessment Form can help you share important personal information about your child.
• Transition Checklist will help you prepare your child for adulthood.

See also Health Information Management for medical records and authorization forms.

• Birth Defect Research for Children (BDRC)
• Healthfinder.gov by the U.S. Department of Health and Human Services
• Health Issues from the American Academy of Pediatrics (AAP)
• List of Institutes, Centers and Offices by the National Institutes of Health (NIH)
• MedlinePlus by the U.S. National Library of Medicine
• National Organization for Rare Disorders (NORD)