Medical/Health Resources
Childhood Tracheostomy Alliance
The Childhood Tracheostomy Alliance is a non-profit created by families and healthcare providers working together to transform the care and quality of life of children with tracheostomy and ventilator dependence and their families. The Alliance is focused on educating communities, improving access to in-home support and supplies, helping with out-of-pocket medical expenses, and providing a network of support from both caregivers and healthcare professionals. The Childhood Tracheostomy Alliance website includes:
- Frequently asked questions and terms about tracheostomy and mechanical ventilation
- Annual caregiver grants
- A list of resources by state
Children and Youth with Special Healthcare Needs in Emergencies
All children have unique needs in emergencies, but care for children with special healthcare needs is often more complex because of their various health conditions and extra care requirements. They may have a hard time moving from one place to another, urgent or constant medical needs, difficulty communicating or have trouble with transitioning to different situations. A disaster can present all these difficulties at once.
The CDC provides information on how to prepare and respond so you can help maintain calm and keep your family safe.
Children’s Craniofacial Association
Children’s Craniofacial Association (CCA) is a national, nonprofit organization providing resources to empower and give hope to individuals and families affected by craniofacial conditions. CCA resources include:
- Financial assistance
- Educational overviews and video library
- Craniofacial surgery care packages
- Resources for teachers and parents
Visit the Children’s Craniofacial Association website for more details.
City of Chicago Emergency Assistance Registry for People with Disabilities or Special Needs
The City of Chicago has created a voluntary registry for individuals who may need assistance in the event of an emergency.
Individuals with disabilities or special needs or their caregivers can sign up at www.cityofchicago.org/voluntaryregistry/ or contact the Mayor’s Office for People with Disabilities (MOPD) at (312) 744-7050 for additional information.
Cleft and Craniofacial Condition Resources
HealthyChildren.org, the parenting website of the American Academy of Pediatrics, provides articles and information for parents and caretakers of children with a cleft lip, cleft palate or craniofacial disorder.
Clinical Trials-National Institutes of Health (NIH)
Through its Library of Medicine, NIH has developed this site to provide information about clinical research studies.
Community and Residential Services Authority (CRSA)
The Community and Residential Services Authority (CRSA) is an interagency group that identifies and addresses barriers facing parents, families, professionals and providers trying to get needed services and programs for individuals with a behavior disorder or a severe emotional disturbance. CRSA’s free and confidential services include:
- Helping agencies, schools and parents form working partnerships using a team approach
- Addressing/resolving multiple agency disagreements about residential placement or funding of placement and services
- Assisting local communities in developing and strengthening collaborative interagency networking on request
You can also call CRSA to connect with a program coordinator who will listen and help you develop a plan of care at (877) 541-2772 or (217) 782-2438.
Community Nurse Health Center provides primary medical care and dental care. Services are available to all families and individuals regardless of your insurance status or ability to pay. A sliding fee is available for low-income and uninsured individuals. Medicaid is accepted.
Congenital Heart Defects (CHDs) Fact Sheets and Articles
Congenital heart defects (CHDs) are conditions that are present at birth and can affect the structure of a baby’s heart and the way it works. The Centers for Disease Control and Prevention (CDC) provides fact sheets, articles, patient stories and more to help you understand CHDs and their affect across the lifespan.
Congenital Heart Defects Information
The American Heart Association provides information and resources on congenital heart defects (CHDs).
Information is available in English and Spanish.