Health Condition and Disability-Specific Resources
National Institute of Dental and Craniofacial Research
The mission of the Institute (NIDCR) is to improve oral, dental and craniofacial health through research, research training, and the dissemination of health information.
National Library Service for the Blind and Print Disabled (NLS)
The National Library Service for the Blind and Print Disabled (NLS ) is a free braille and talking book library service for people with temporary or permanent low vision, blindness, or a physical or perceptual disability that prevents them from reading or holding the printed page. Through a national network of cooperating libraries, NLS offers books the way you want them: in braille or audio, mailed to your door for free or instantly downloadable.
NLS works to ensure that all may read by providing eligible individuals access to reading material regardless of age, economic circumstances or technical expertise.
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+
New to Seizures and Epilepsy Toolkit
Hearing about epilepsy and seizures for the first time can be frightening and confusing. The Epilepsy Foundation’s “New to Seizures and Epilepsy Toolkit” provides a starting point for individuals, parents and caregivers to learn about:
- What epilepsy is
- Available resources
- How to make the most of doctors’ visits
- How to take control of seizures
Individual fact sheets on topics including seizure first aid and developing your own seizure response plan are also available. All materials are available in English and Spanish.
Northlands Association for Special Recreation (NASR)
Northlands Association for Special Recreation (NASR) is a cooperative partnership between the Belvidere, Freeport and Rockford Park Districts. NASR programs are open to individuals with disability-related needs including physical, mental and developmental disabilities, mental illness, behavior disorders and visual or hearing impairments.
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/.
OSF Autism Pathways
OSF Healthcare Children’s Hospital of Illinois’ OSF Autism Pathways provides tools, information and resources to help individuals of all ages navigate their autism journey. The OSF Autism Pathways team can help answer questions about treatment options and other concerns. It can also help connect individuals to autism services and supports.
OSF Autism Pathways’ services and resources include:
- General autism information and resources
- Autism diagnostic services
- Behavioral health, crisis and respite care supports
- Daily living skills development and transition to adulthood planning
- Employment and job coaching
- Family supports and financial planning
- Social and recreational opportunities
- Therapeutic interventions
To refer yourself or your child, please call (844) 910-0770 or (309) 624-4830. You can also fill out the OSF Autism Pathways online form.
Over the Rainbow (OTR) – Housing for Individuals with Physical Disabilities
Over the Rainbow (OTR) is an Illinois non-profit organization providing independent living solutions for individuals with physical disabilities that are:
- Affordable
- Accessible
- Barrier-free
- Person-centered
OTR’s apartments are located throughout the Chicago region and Northern Illinois. Applicants must be at least 18 years of age and meet OTR apartment communities eligibility requirements.
Pact, Inc. (CFC #5) Early Intervention
Provides resources and support for children 0-3 with developmental disabilities in DuPage County.
750 Warrenville Road
Suite 300
Lisle, IL 60532(800) 637-7181
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 one-week 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.