Family and Caregiving Support Resources

National Federation of Families Toolkits and Resources

The National Federation of Families (NFF) is a national family-run organization focusing on the issues of families whose loved ones experience mental health and/or substance use disorders during their lifetime. NFF offers family and caregiver toolkits on a variety of topics, peer support, educational resources, webinars, activities and more.

National Federation of the Blind

The National Federation of the Blind (NFB) is the oldest and largest nationwide organization of blind people in the United States. NFB helps create a wide range of opportunities for children and adults who are blind in all 50 states, Washington, DC, and Puerto Rico. Programs and services cover a wide range of areas, including advocacy, education, Braille certification, parent support and resources, training, employment, technology and more.

A small sampling of NFB resources includes:

• Braille resources
• Free White Cane Program
• Free Slate and Stylus Program
• Scholarships and awards
• Career mentoring

For more information, contact NFB at (410) 659-9314 or nfb@nfb.org

There is also an Illinois chapter. Visit the National Federation of the Blind in Illinois website, call (312) 343-8396, or email  president@nfbofillinois.org.

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 Alliance

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

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.