Family and Caregiving Support Resources
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.
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+
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.
NeuroJourney is an educational resource for parents, caregivers and clinicians navigating the ever-evolving needs of children with severe neurological impairment (SNI).
You can find both practical and medical information and insights from parents and clinicians about the social and emotional experiences common to having a child with SNI. Resources include a Caregiver Worksheet as well as guidance to help build the care team, prompts for conversations with specialists and more.
For questions, please use the online form to contact the Courageous Family Network.
NORD: National Organization for Rare Disorders
The National Organization for Rare Disorders (NORD) offers support, information and a variety of events for clinicians, researchers, patients and families affected by rare diseases.
NORD’s Resource Center provides patients and caregivers with free webinars, fact sheets, infographics, support and advocacy groups links, and referrals for rare disorders.
NORD’s RareCare Program website provides a list of financial assistance programs that can help patients obtain life-saving or life-sustaining medication they could not otherwise afford.
NORD’s State Resource Center contains local, state and national organizations listed by state or by topic offering free or low-cost services for people impacted by rare diseases.
NORD’s free, self-paced online course “From Records to Research: Making Sense of Health Data for Rare Diseases” provides help for understanding health data, research participation and how both contribute to improving treatments and care. The course is available:
Normal Moments supports Chicagoland families with critically ill/medically complex children up to age 17 by providing help with many household and outdoor tasks. The organization matches volunteers based on the families’ needs, volunteer location and interests. Support includes:
- In-home help with necessary chores such as house cleaning, laundry, pet care and other errands
- Outdoor services such as lawn maintenance and snow removal
- Annual holiday programs
Please note: Normal Moments volunteers may not provide care for dependents. A responsible adult over 18 must be in the house while a volunteer is present with children.
For questions, please fill out the online form on the Normal Moments’ Contact Us page or call (630) 888-8111.
North West Housing Partnership (NWHP)
North West Housing Partnership (NWHP) programs cover a broad area of the suburban northwest, west and Chicagoland area. It offers a variety of housing and handyman programs for seniors 60 years and older and people with disabilities, 18 or over, in need of simple repairs in the communities of:
- Arlington Heights
- Buffalo Grove
- Mount Prospect
- Palatine
- Rolling Meadows
- Des Plaines
- All of Palatine and Wheeling Townships
- Oak Park Township (including Oak Park and River Forest).
NWHP also offers:
- Housing workshops and seminars
- Handyman and CAPABLE (Community Aging in Place Advancing Better Living for Elders) programs for people with disabilities ages 18 and up
- The Home Repair Accessibility Program (HRAP) in Cook, Kane and DuPage counties, funded by the Illinois Housing Development Authority (IHDA), to help homeowners address home accessibility issues that affect the health or safety of their families
For more information, visit the Contact Us page on NWHP’s website.
Northeast Community Fund in Decatur
Northeast Community Fund helps families in the Decatur and Macon County community with food, clothing, household goods and funding for utility payments, obtaining IDs, baby formula and wipes, emergency lodging and prescription medicines. The organization’s food pantry provides monthly food baskets to those in need. It also operates a microfinance program and a program for families to work with a staff member and a mentor to achieve short- and long-term goals towards self-sufficiency.
The Northern Illinois Food Bank delivers food and healthy eating services across 13 counties (Boone, DeKalb, DuPage, Grundy, Kane, Kankakee, Kendall, Lake, McHenry, Ogle, Stephenson, Will and Winnebago counties). The Northern Illinois Food Bank provides weekly drive-thru Mobile Markets with free and fresh groceries, an online food pantry, a recipes and nutrition hub, and free economic mobility learning resources.
