Health Condition and Disability-Specific Resources
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.
The Danny Did Foundation works toward its mission to prevent deaths caused by seizures with these main goals in mind: advancing public awareness of Sudden Unexpected Death in Epilepsy (SUDEP), enhancing the SUDEP communication model between medical professionals and families afflicted by seizures, and mainstreaming seizure detection and prediction devices that may assist in preventing seizure-related deaths.
The Danny Did Foundation’s grant program provides financial assistance to qualifying individuals to purchase seizure detection and seizure prediction devices.
For questions, please call (800) 278-6101 or complete the online Danny Did Foundation contact form.
DayOne PACT (CFC #5) is a not-for-profit agency that provides service case management, trust and guardianship services for people with disabilities in Illinois through its Life Management Services program. The agency also functions as the Child and Family Connections agency for DuPage, Kane and Kendall Counties. This service works with families with children who are eligible for services through the Illinois Early Intervention system.
DayOne PACT aims to help individuals with disabilities of all ages live supported, productive and meaningful lives.
- The St. Charles location serves Kendall and Kane counties. Call (630) 879-2277 (telephone and “Crisis After Hours” with 24-hour accessibility) or (888) 356-0491 (toll-free)
- The Lisle location serves DuPage County. Call (630) 960-9700 (telephone and “Crisis After Hours” with 24-hour accessibility) or (888) 356-0491 (toll-free)