Resource Directory /

Family and Caregiving Support Resources

  • National Federation of the Blind of Illinois

    The National Federation of the Blind of Illinois (NFBI) is a nonprofit organization serving blind individuals and their sighted friends and family of all ages. NFBI provides information, programs and well-trained leaders to help newly blind people adjust to vision loss, promote the full participation and integration of blind people in our communities, and effect change at the state and national levels. Programs include:

    • A free audio news service for anyone who is blind, low-vision, or otherwise print-disabled
    • Scholarship and education programs
    • Voter resources
    • Statewide and local chapters

    Visit NFBI’s website to view the complete list of Illinois chapters and contact information.

    Please contact the chapter nearest you for more information.

  • National Maternal Mental Health Hotline

    The National Maternal Mental Health Hotline is free, confidential and here to help 24 hours a day, seven days a week in English and Spanish for anyone who is pregnant or just had a baby.

    Trained counselors can listen to what you’re going through, connect you with local support groups and organizations, and refer you to other healthcare professionals if you need more care.

    Call or text (833) 852-6262 or (833) TLC-MAMA.

  • National Paralysis Resource Center

    The National Paralysis Resource Center (NPRC), operated by the Christopher and Dana Reeve Foundation, seeks to improve the quality of life for people living with paralysis through grants, information and advocacy. The NPRC assists people as they navigate through the various stages of their recovery after the diagnosis of paralysis.

    NPRC offers free tips and information on health, costs and insurance, choosing a wheelchair, home and travel, and help for caregivers. NPRC also offers:

    • Information specialists
    • Peer and family support programs
    • Updates on advocacy/policy initiatives
    • A program for veterans and current service members

    If you have questions, please email Peer@ChristopherReeve.org.

  • National Parent & Youth Helpline

    Offers emotional support from a trained advocate to help you become an empowered and stronger parent. Parent advocates can offer emotional support, help you problem-solve, connect you with local resources, help you explore new resources and more.

    The National Parent & Youth Helpline is available for those seeking immediate support and guidance 24 hours a day, 7 days a week.

    For help anytime, visit the National Parent & Youth Helpline website to chat or complete the online form, or call or text (855) 427-2736.

  • National PKU Alliancesun-icon

    The National Phenylketonuria (PKU) Alliance (NPKUA) provides help with understanding and managing PKU from diagnosis to adulthood. NPKUA resources include a New Parent Support Kit, a Kindergarten Kit for children entering kindergarten, a downloadable PKU Binder Toolkit, guides for educators and information on the latest treatments, insurance coverage and terms, a mentor program, cooking and food, research grants and more.

    NPKUA hosts “Community Call.” These monthly peer support groups offer a place for sharing and connecting with others who understand the unique challenges of living with PKU. Please see the events calendar on NPKUA’s website for meeting times and other details for each of the following groups:

    • Caregivers of children ages 0 to 3
    • Caregivers of children ages 3 to 12
    • Caregivers of teens ages 13 to 17
    • Adults with PKU ages 18+
    • Adults with PKU ages 40+

  • National Resource Center for Patient/Family-Centered Medical Home

    The National Resource Center for Patient/Family-Centered Medical Home provides information, support, and advocacy for families and pediatric healthcare professionals who care for children with special needs in managed care arrangements. The “medical home” isn’t a place. It is an approach focusing on strengthening and improving the system of care for children and youth with special health care needs and their families.

    Located on the American Academy of Pediatrics website, the National Resource Center for Patient/Family-Centered Medical Home offers:

    • Information on why a medical home is important
    • A medical home overview and FAQs
    • Tools and resources for families
    • Resources for medical professionals
    • Care coordination resources

  • National Resource Center on Supported Decision-Making

    The National Resource Center for Supported Decision-Making is dedicated to protecting everyone’s right to make choices. Supported decision-making is a way people with disabilities can make their own decisions and stay in charge of their lives while receiving any help they need to do so.
    The National Resource Center for Supported Decision-Making can help you find information on supported decision-making, connect you with people and organizations that may be able to help you, and answer your questions.

  • National Respite Locator

    ARCH National Respite Network and Research Center provides a National Respite Locator on its website as well as additional resources for finding respite in your community.

  • National Technical Assistance Center on Transition: The Collaborative (NTACT:C)

    The National Technical Assistance Center on Transition: The Collaborative (NTACT:C) provides a wide range of information, training and supports to build and strengthen services and instruction for secondary students and out-of-school youth with disabilities. Its website offers:

    • Training and technical assistance.
    • Easy-to-find transition topic areas. Each topic includes an additional list of key resources, related topics and training webinars.
    • Webinars and toolkits

    For any questions, contact NTACT:C online.

  • Needy Meds

    NeedyMeds is a national non-profit organization providing information on healthcare and medication programs designed to help people afford their medications and other healthcare costs. NeedyMeds can help with paying for prescriptions, finding a free clinic and understanding your healthcare options. All the information is free, easy to access and updated regularly.

    NeedMeds also offers:

    • A toll-free helpline at (800) 503-6897 weekdays from 8 a.m. to 4 p.m.
    • A directory of affordable health clinics for medical, dental, behavioral health and substance abuse services
    • Assistance with finding a private or government-funded organization offering help with treatment costs associated with specific diagnoses
    • A Patient Assistance Program (PAP) providing free or discounted medicines to people who are unable to afford them
    • Information on coupons, savings cards, rebates and co-pays