Health Condition and Disability-Specific Resources
Cleft and Craniofacial Condition Resources
Children with a cleft lip, cleft palate or craniofacial disorder often have complex needs and may undergo a variety of procedures and therapies. Often, these children need multiple pediatric specialists and surgeons to provide comprehensive care
HealthyChildren.org, the parenting website of the American Academy of Pediatrics, provides cleft and craniofacial resources and articles for parents and caregivers to help answer their questions.
The Illinois Client Assistance Program (CAP) is a federally funded program that helps persons with disabilities understand and use rehabilitation services. The program:
- Informs and advises individuals of the services and benefits available to them through programs authorized under the Rehabilitation Act and Title 1 of the Americans with Disabilities Act
- Advocates and provides assistance for people seeking programs and services provided for within the Rehabilitation Act
- Helps to identify and resolve problems that may arise during the rehabilitation process
- Identifies problem areas in providing rehabilitation services and makes suggestions for improving services
Those eligible for CAP are:
- Anyone seeking information, applying for services or already receiving services from the Division of Rehabilitation Services (DRS), the Vocational Rehabilitation and the Centers for Independent Living
- Persons who are dissatisfied with the services they are receiving, or who have been denied services for which they may be eligible
- Persons needing intervention or assistance in their relationships with programs providing rehabilitation service
For more information about CAP, call (855) 452-2725 (1-855-ILCAP-25). TTY and Relay callers can dial 711. You can also email cap@equipforequality.org or visit equipforequality.org/cap for more details.
CMS Sickle Cell Disease Provider Toolkit
The Centers for Medicare & Medicaid Services (CMS) Sickle Cell Disease (SCD) Provider Toolkit provides help to strengthen the infrastructure across care settings and support the needs of people with SCD. The toolkit includes:
- How CMS program coverage can assist people with SCD
- General information about SCD
- Resources for individuals with SCD and those who support them
- SCD treatments, pain management and wellness
- Information for providers and community partners
- CMS Action Plan
The Secretary of State’s Office offers an Illinois Department of Human Services (DHS) Communication Wallet Card to help notify law enforcement that a person may have difficulty communicating. Applicants may request the wallet card at any Illinois Secretary of State Driver’s License Facility.
The wallet card is available to notify law enforcement in advance that a person may require alternative methods of communication in order to respond to and communicate with an officer.
For more details, contact the Secretary of State’s Office at (800) 252-8980.
Complex Care at Home for Children
The Complex Care at Home for Children website aims to provide an educational resource for parents and caregivers of children with medical complexity. The site offers information and tools to help facilitate daily care, ensuring a safe environment for the child and family. Topics include:
- Tracheostomy and other types of respiratory care
- Peritoneal dialysis
- Enterostomy care
- Enteral nutrition
- Parenteral nutrition
- Intravenous antibiotic therapy
- Intermittent bladder catheterization
Congenital Heart Disease Information and Resources
The American Heart Association provides information and resources on congenital heart disease (CHDs). It includes details on common types of heart defects, understanding risks, symptoms, the diagnostic process, care and treatment, personal stories, and tools and resources for families.
The page also includes an animated video from the American Heart Association and the Children’s Heart Foundation to help parents navigate difficult conversations with siblings (and other young family members) of children with CHDs. The video aims to help siblings and young people better understand how they can support a loved one living with congenital heart disease.
Cook For Love is a nonprofit organization providing support, resources and education to individuals, families and clinicians managing phenylketonuria (PKU). The site empowers members of the metabolic disorders community to improve their health through cooking and education.
Cook for Love’s website includes:
- Recipes for creating low-protein foods
- Information about low-protein products to keep in your pantry
- Step-by-step instructions
- Videos for making meals and treats
The Centers for Disease Control and Prevention (CDC) provides a series of YouTube videos on COVID-19 with information in American Sign Language.
Create Your Own Communication Card for People With Hearing Loss
The Illinois Deaf and Hard of Hearing Commission (IDHHC) provides a template to create a personalized Communication Card for people with hearing loss. The card helps others understand your communication needs and lists your preferred communication provider’s name and contact information. To create a personalized Communication Card, visit the “Create my own Communication Card” page on IDHHC’s website.
For more information, contact the IDHHC:
- Voice: (217) 557-4495
- Video: (217) 303-8010
- TTY: (888) 261-2698
- DHH.Communications@Illinois.gov
Cued Speech Program for Families of Deaf and Hard-of-Hearing Children
Cue College’s Cue Family Program provides a free, online Cued Speech class to families of deaf and hard-of-hearing children.
Cued Speech combines a small number of simple hand cues with the natural mouth movements of speech to make the sounds or “phonemes” of spoken language clear through vision alone.
The Cue Family Program includes free access for one year to the online Cue College course, “CS100 – Introduction to Cued American English – Self Study”, for parents, guardians, additional family members and caregivers of a child with hearing loss or other communication challenges.