Family Support Resources
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, links to support and advocacy groups, and referrals for many 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.
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
Note that Normal Moments volunteers may not provide care for dependents. A responsible adult over 18 must be in the house while a volunteer is in the house with children.
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 mentor to achieve short- and long-term goals to move towards self-sufficiency.
Nurse-Family Partnership of Sangamon County
Nurse-Family Partnership of Sangamon County, provided by Southern Illinois University School of Medicine, serves first-time parents in Sangamon County to help improve pregnancy outcomes, child health and development, and economic self-sufficiency.
Nurse-Family Partnership (NFP) creates positive outcomes through nurse home visitors who work with families from pregnancy until the child’s 2nd birthday. Individuals may qualify for NFP of Sangamon County if they are less than 28 weeks pregnant and have financial, social or health risk factors such as:
- Loss of household income or an inability to pay for living expenses
- Chronic health condition(s) or mental health concerns
- Domestic violence
- Transportation or access to care difficulties
No proof of income is required for enrollment. Referrals can be made by providers, nurses, community services and individuals by calling (217) 545-0175, emailing at siunfp@siumed.edu or using IRIS (integrated referral and intake system) or Touch Works “SIU Nurse-Family Partnership”
Ollie Hinkle Heart Foundation – Ollie’s Branch
The Ollie Hinkle Heart Foundation (OHHF) offers a variety of information, resources and mental health support for families caring for children with pediatric heart conditions and heart disease. OHHF resources include:
- Free mental health services through Ollie’s Branch. All sessions are completely free regardless of insurance status.
- Financial support for families whose heart warrior is currently inpatient or has been admitted within three months of the request. OHHF Community Outreach requests are considered on a case-by-case basis and can help with housing, utilities, transportation, medical bills, and more.
OHHF’s mental health access program is open to heart-warrior families anywhere in Illinois. Financial support requests may come from anywhere in the United States.
Opportunities for Access – A Center for Independent Living
Opportunities for Access – A Center for Independent Living (OFACIL) is a member of the Illinois Network of Centers for Independent Living serving residents of Clay, Clinton, Edwards, Effingham, Fayette, Hamilton, Jasper, Jefferson, Marion, Wabash, Washington, Wayne and White counties. Offices are located in Mt. Vernon, Carmi and Effingham.
Programs include:
- Skills and employment training
- Support groups and advocacy
- Housing referral and community reintegration
- Youth transition and parent training program
- Adaptive equipment
Options & Advocacy for McHenry County
Options & Advocacy is a service coordination agency that provides information and referrals, screening, evaluation and assessment, service plans, community education and more for children and families in McHenry County. Its programs include:
- Child and Family Connections Program, an Early Intervention program
- Autism Resource Center
- Helping Us Grow (HUG), a home visiting program
- All Our Kids (AOK) network
- Sibshops
- Playgroups
For more information, visit www.optionsandadvocacy.org/.
Oracle Health Pediatric Grants
Oracle Health Foundation’s pediatric grants connect children to needed care when finances stand in the way. Applications are accepted from the United States and through select international providers.
The pediatric grants cover a wide variety of clinical, equipment, travel and lodging and vehicle modification costs related to children’s healthcare needs.
Funding criteria include that the child must be 18 years of age or younger (individuals up to 21 with developmental disabilities may also be considered). You can find more details on the Oracle website on how to request a pediatric grant.
PACER Center is a parent training and information center for families of children and youth with all disabilities from birth to young adults. It serves families across the nation.
Parents can find publications, workshops and other resources to help make decisions about education, vocational training, employment and other services for their children with disabilities.
PACER’s National Bullying Prevention Center
PACER’s National Bullying Prevention Center provides resources and information regarding the bullying and harassment of students with disabilities.