Welcome to the Dubowitz Syndrome Support Network
If you child is eligible for the Katie Beckett program, chances are she/he will also be able to get WIC. WIC is generally geared towards low income families, but as with the Katie Beckett program, it waives this for families with children with special healthcare needs. WIC covers the child up until the age of 5 and will pay for formula (depending on the brand, not necessarily all of it, but if your child needs some very expensive hypoallergenic stuff, it's well worth it), cheese, milk, cereal, and sometimes fruits and vegetables in the summer months. WIC is not the easiest program to get on and you may be turned down initially, but call your state director and explain that your child is on Medicaid or the Katie Beckett waiver (one in the same, depends on the state).
If you are low income, your child may also qualify for Supplemental Social Security benefits. This entitles the child to a monthly check. You need to keep careful track of your income because if it changes and you don't notify the SSA, they will ask for funds back if you've exceeded the limit. Once again, make sure you have all the necessary papers before you go to your appointment, it makes it so much easier. This program is based on the family's entire income level.
When all else has failed and you need something for your child that is not covered, you can find local charitable organizations a huge help. Groups like the Lions, and Shriners all do wonderful things for children. Shriner's hospitals give free care and equipment to children who cannot afford it, with an interest in children with hearing issues, burns, and physical disabilities. They say that the Shriner's hospitals don't even have a billing department! Even United Cerebral Palsy occasionally has small grants to help families with anything from summer camp, therapeutic horseback riding, to lodging for a medical visit far away. You can find local charities in your yellow pages.