I am a parent of 3 children with Cystic Fibrosis (“CF”). If you are not
familiar with CF, it’s a very costly and time consuming disease. There are many
medications and treatments which take a lot of time and money. Years ago we
were told, by another parent, about this wonderful program called
the Physically Handicapped Children’s Program. It is a financial entitlement
program funded in NYS under the Maternal Child Health Block Grant. Eligibility
is based on salary and resources. I wasn’t working at the time and we were
approved. It was wonderful. This program would pay all co-pays for
medications, doctors, labs, etc. related to CF only. Time went by and I got a
little part time job and my husband would work overtime so we could afford
clothes and food! As this program has a yearly renewal we were then “kicked
off” the program.
I wrote many
letters and contacted many people because I truly could not understand why
eligibility calculations were not based on the number of children in a family
that are afflicted with a diagnosis and not just the number of people in our
family. I also kept mentioning the number of spend downs that my family
incurred with said diagnosis.
Lo and behold.
the Physically Handicapped Children’s Program did, in fact, change their
eligibility criteria to reflect families with more than one child
affected by a diagnosis. If you are applying for a program and have more than
one child with any particular diagnosis look into the eligibility criteria. Do
not be afraid to write letters and voice your concerns. Things will not
change unless you do something to make it happen!
