Health Information Center

When Services End: Options and Ideas for Families of Children with Special Needs: July 2009 Update

When Services End: Options and Ideas for Families of Children with Special Needs: July 2009 Update


The current budget crisis in Illinois has impacted many children and adults with disabilities recently- with very little advance notice- as programs offering in-home services and supports are ending.


In addition, it is very common for children with special needs to require services, supports, equipment, therapies, medications and other items that are not covered by any health insurance plan or government program.


Many families have found alternative strategies for covering these costs.


Here are some ideas for you to try- all have been recommended and tested by families from around Illinois.


1.      Find out if providers will offer a discounted rate if you pay cash.


2.      Apply for all possible government programs even if you don’t think you are eligible. Some private providers may offer payment on a sliding scale to families who can show a rejection letter from a government program.

Here is a comprehensive, updated overview of Illinois assistance programs for families with limited financial means:


3.      Use existing community resources and ask for accommodations to meet your child’s needs. This includes park district programs, child care providers, and more.  Find a recreation program near you at:


Connect to a Child Care Nurse Consultant who assists families of children with special needs and community child care providers to facilitate successful inclusion. Here is a link to the regionally-based Child Care Nurse Consultant directory:





4.      Remember that you may be eligible for an income tax deduction for your uncovered medical and disability-related costs. See our Income Tax Facts guide for more information:


This includes child care and respite care required to enable a parent to go to work and/or to school. (For children with special needs of any age.)


5.      Look into Medical Savings Accounts where you can bank pre-tax dollars for uncovered medical expenses. and



6.      Check with your local health department to find out if your child (and you) can receive, for example, free or low-cost immunizations, well-child care or other services. Here is a link to finding your local health department in Illinois:


7.      In addition to seeking out financial resources specifically related to your child’s medical/disability needs, focus on resources and strategies foryour overall family financial situation that may “free up” funds that can then be designated for “special needs expenses”. Visit the University ofIllinois Cooperative Extension Services “Getting Through Tough Economic Times” website for practical advice and resources:


8.      Find other families and share the cost of hiring a support staff person for group respite sessions.


9.      Look into starting a respite care cooperative with other families in your area.

     For more information, contact:

Vickie Niswander, State Director

Managing the Art of Living

(217) 778-1664


10. Check with your employer, community groups and houses of worship for local grant funding options.


11. Ask friends and relatives to help pay for needed services instead of giving your child traditional birthday and holiday gifts.


12. Seek out students from local colleges who may be able to get practicum credits while volunteering to learn with your child. Find colleges and universities in your area via the Illinois Board of Higher Education website:


13. Contact local high schools (both public and private) for students seeking community service opportunities.


14. Contact service organizations in your community (scouts, houses of worship, fraternal organizations, sororities, alumni associations) forvolunteers and fund raising ideas.


15. Set up a “wish list” on  and email it to your friends and family members with specific requests.


16. Accept offers of help from friends and neighbors – make up a list of things they can help with (examples: running errands, rides to appointments, help with chores, respite, babysitting, lawn care, meal preparation, pet care, etc). Keep your list handy when people say “let me know if there’s anything I can do to help”.


Please contact us at 866-931-1110 or

if you’d like to share a funding idea that worked for you!