You may remember the fight against cost participation for families in the Early Steps program back in 2005. Families came out in numbers and spoke out against charging families for needed therapies for children with developmental delays in the program.

You may not know though that I’m the parent who led that charge back in 2005. As president of the Down Syndrome Association of Greater New Orleans at the time, I organized families across the state to fight cost participation and we were right to stand against it — back then.

Back then, the program was rife with mismanagement, the cost participation proposal was the most egregious I could think of and would have bankrupted families trying to get help for their children or left children more disabled as parents dropped out of the program.

This comparatively small program in the overall Department of Health and Hospitals budget was $26 million dollars in the red with no oversight and no plan for collecting money from families.

Things have changed. This is not the Early Steps program of 2005. The program is now under the supervision of the Office for Citizens with Developmental Disabilities — where it belongs. The cost participation schedule is nowhere near as egregious as in 2005 and only charges families in higher-income brackets with generous limits and allows for hardship appeals.

This time around, we need cost participation to make sure children with developmental disabilities keep their services. Recently, a bill was just voted down to allow the program to charge some families. That bill may be reintroduced. And this time, if it were introduced with a clause stating families would only be charged as a last resort I could get behind a bill like that.

I think most families could too, given the alternative. I am supporting cost participation in Early Steps today because we are in serious danger of losing it altogether. That would be a tragedy for children in this state.

I know what Early Steps did for my family. I know that there will be kids out there with absolutely nothing if we don’t get behind this.

Karen Scallan, program director

La. Family to Family Health Information Center