Resource Directory /

Health Condition and Disability-Specific Resources

  • Parent Guide to Autism

    The Parent Guide to Autism from the Illinois Chapter of the American Academy of Pediatrics offers a free seven-day email series that provides practical guidance on autism, early intervention and supporting your child. Available in English and Spanish, the emails cover topics such as what autism is, how to recognize early signs, steps in the diagnosis process and more.

    Each Parent Guide to Autism email takes less than 10 minutes to read. Topics also include:

    • How to access therapies and early intervention services
    • Your child’s rights to school support if they have autism
    • Real strategies for daily life
    • Where to find resources and support in Illinois

  • Parent Institute Lectures for Families of Children With Hearing Loss

    The Institute for Parents of Preschool Children Who Are Deaf or Hard of Hearing is a program for parents of young children who have a significant hearing loss. It takes place on the campus of the Illinois School for the Deaf in Jacksonville each June.

    Participating parents attend daily lectures by experts in the field to learn about raising a child with hearing loss. Lecture topics include the Individuals with Disabilities Education Act (IDEA), advocacy, communication options, language, assistive listening devices, literacy and amplification.

    UIC’s Division of Specialized Care for Children (DSCC), a supporter of the Institute, has made these presentations available online so they can benefit more families of children with hearing loss. Visit the 2019 Parent Infant Institute Video Recordings page on the Illinois Early Hearing Detection and Intervention (EHDI) Program website.

  • PatientsLikeMe

    PatientsLikeMe uses the power of community and digital platforms to improve the lived experience of patients managing complex health conditions.  PatientsLikeMe offers people navigating a wide variety of health journeys a central hub for peer support, personalized health insights, tailored digital health services and patient-friendly clinical education.

    PatientsLikeMe digital platforms cover five key areas where you can dive into discussions, ask questions and gain insights from others like you:

    • Community – 70 communities that cover 2,800 conditions where you can make helpful connections and be part of a safe community
    • My Health – An easy-to-navigate place for tracking symptoms, treatments, labs and vitals
    • Conditions- Learn how to manage your condition better and share your experiences with others
    • Treatments – Learn from others and find the treatment that is right for you
    • PatientsLikeMe Community Voice Blog

    For more information and a list of frequently asked questions, visit the PatientsLikeMe Help Center.

    Still have a question? Please fill out and submit the form on the PatientsLikeMe Contact Us page.

  • Pediatric Tracheostomy Tube Emergency Management Video

    In this video, nurses from Ann and Robert H. Lurie Children’s Hospital of Chicago describe and demonstrate emergency management for pediatric patients with tracheostomy (trach) tubes. The video covers:

    • Prevention and assessment of emergency situations
    • How to manage a mucous plug
    • How to replace a trach tube that has become dislodged
    • What to do if the trach tube is difficult to replace
    • When to provide manual ventilation using bag to trach tube, bag and mask to mouth, and mouth to mouth

  • Perkins School for the Blind College Readiness Resource Center

    Perkins School for the Blind College Readiness Resource Center helps students and the many people involved in assisting them prepare for success. Students, families and education professionals can access helpful planning and assessment tools, checklists and resources for going to college, pre-college training programs or heading straight to work.

    The College Readiness Resource Center includes:

    • Resources for families to start planning early
    • Information on the laws that affect the transition from high school to college
    • How to get students ready for life after high school
    • The College Readiness Checklist and Teachers of Students with Visual Impairments (TVI) Toolkit

  • Preparing For College When You Have Congenital Heart Disease

    Going to college is an exciting time filled with new friends and experiences. When you have congenital heart disease (CHD), it can be overwhelming or tempting to put your care on the back burner. It’s very important that you stay in care and are as prepared as possible.

    The Adult Congenital Heart Association provides this resource with tips to help you maintain good health while you further your education.

  • Progress Center for Independent Living Serving Suburban Cook County

    The Progress Center for Independent Living serves over 133 municipalities throughout suburban Cook County. It is a community-based, non-profit, non-residential service and advocacy organization operated for people with disabilities, by people with disabilities. Progress Center provides a variety of training and education services, housing assistance, and tools and resources for people with disabilities to live independently in their own homes. These include:

    • Youth transition to adulthood program
    • Independent living skills training
    • Peer counseling
    • Housing assistance
    • Deaf services
    • Braille classes
    • Radio Independent Living 24/7

    For questions, please call (708) 209-1500 or email info@progresscil.org.

  • Project LEAP – Launching Equity in Access to Preschool

    Equip for Equality’s Project LEAP (Launching Equity in Access to Preschool) helps children with disabilities from birth to 6 get Early Intervention and early childhood special education services so that they’re ready to succeed in school. Project LEAP can help your child:

    • Move from Early Intervention to early childhood education
    • Receive the tests needed for special education services
    • Access behavior supports and assistive technology

    Project LEAP can also go to your child’s Individual Education Program (IEP) meetings, mediation and due process hearings in select cases.

    For more information or to schedule a time to talk, please contact:

  • Rare Sisters Batten Foundation

    The Rare Sisters Batten Foundation (RSBF) supports the development of medical research to develop treatments and cures for CLN3 Batten Disease. It also provides financial assistance to families with children diagnosed with Batten Disease, a neurodegenerative disorder.

    Families with children diagnosed with Batten Disease may apply with RSBF for financial help to cover a wide variety of needs. Funds are awarded on a case-by-case basis and are dependent on availability.

  • RCADD Back-to-School Resources / Recursos para el regreso a clases

    The Resource Center for Autism & Developmental Delays’ (RCADD) Virtual Resource Room offers back-to-school resources for parents/caregivers and their children with autism and/or neurodiversity. Resources in English and Spanish to help with a new school year include:

    • Tip sheets- Hojas de consejos
    • Schedules and routines materials- Horarios & rutinas
    • Social stories- Historias sociales
    • Visual supports – Apoyos visuales
    • Structured activities- Actividades estructuradas