Resources for…
Support Groups
Guides & Educational Materials
State & Federal Services
Adaptive Sports
Family Medical Leave Act & Insurance
Scholarship & Financial Assistance
Understanding 504 Plans & IEPs
Family Medical Leave Act (FMLA) & Insurance
Information on Employment Assistance, Health Insurance, and Financial Assistance Programs
Spina Bifida
- Spina Bifida: A Parenting Support Group (Facebook)
- United by Spina Bifida Facebook Support Group – for those affected by Spina Bifida
Support Groups
Hydrocephalus
Craniosynostosis
- CAPPS Kids Support Groups – for parents of children with craniofacial conditions (such as craniosynostosis)
Chiari & Syringomyelia
For Students with Disabilities
General Assistance
- Financial Assistance & Supportive Services – federally funded assistive services and programs
Scholarship & Financial Assistance
Hydrocephalus
Craniosynostosis
Chiari & Syringomyelia
- BJO Scholarships – For students affected with Chiari Malformation and/or Syringomyelia
- Chiari Fund – financial assistance for medical expenses, travel expenses, and utility expenses
- ASAP Conference Scholarship & ASAP L.E.A.R.N Program – scholarship & points program to attend the ASAP 2021 conference
Spina Bifida
Guides & Educational Materials
Hydrocephalus
Craniosynostosis
Spina Bifida
Chiari & Syringomyelia
- What is Chiari Malformation?
- What is Syringomyelia?
- Taking Chiari to School: A Guide for Parents
- ASAP Teen Advisory Council Application – For teens who wish to contribute to the American Syringomyelia & Chiari Alliance Project and gain unique non-for profit experience.
State & Federal Resources
Illinois Early Intervention Services – Provides services for familes to assist children less than 36-months old meet developmental milestones.
- Early Intervention Referral – to be faxed to local Child & Family Connections (CFC) Office
- CFC Office Locator
Illinois Home Services Program – provides services to individuals with severe disabilities so they can remain in their homes and be as independent as possible
Illinois Vocational Rehab Services – help for people with disabilities to find and keep jobs
Caregiver Support – Get tips and information to help you care for your loved one with special medical needs and/or disabilities
Illinois Renter Assistance – Illinois renters who are behind on their rent may be eligible for rental assistance from the Illinois Department of Human Services. To find a local IDHS provider, click here.
For Parents with Children in Chicago Public Schools (CPS)
504 Plans & IEPs
General Information
- The Difference Between 504 Plans & IEPs
- Understanding 504 Plans
- 504 Plan Law
- Section 504 of the
Rehabilitation Act of 1973 – Learn what is covered by Section 504 of the Rehabilitation Act of 1973, understand how to file a complaint, and learn the truth behind common myths about Section 504
How to request a 504 plan or IEP?
- Identify the contact person at your school. Contact person(s) might include: your school nurse, counselor, case manager, principal and/or social worker. A teacher is usually not the contact person and doesn’t coordinate accommodations.
- Tell your contact person about your child’s impairment as soon as possible.
- Ask your contact person to arrange a meeting with you and staff at your child’s school to discuss the academic accommodations you need. It’s important to complete a written, signed and agreed-upon plan.
Adaptive Sports
- Lincolnway Special Recreation Association – LWSRA offers a wide variety of quality programs, including participation in Special Olympics Illinois, each season to residents of all ages and all abilities. Social programs, programs for children, trips, special events, athletic programs, and an adult day program are also available.
- Dare2Tri – Offers free training opportunities for athletes with physical disabilities and visual impairments throughout the year (youth and adults)