BATONROUGE -- Budget cuts in the legislature and a no veto session, leave parents of children with disabilities wondering if they could afford the services their children need.
Friday afternoon concerned parents traveled to Baton Rouge to work with state health officials to find solutions.
It was a chance for those on the front lines to be heard. Parents and advocates for the disabled talked. Government listened.
Rana Ottallah's Her eight-year-old daughter hears through cochlear implants. Her language process therapy costs $92 an hour.
'The longer we wait, the window of making a difference in our kids' lives gets shorter. It gets smaller because we have to start early and if we wait 10 to 15 years, by then, the delay is so far behind we can't catch up,' said Rana Ottallah, of Metairie.
Parents of autistic children came too.
'These services have been very vital to him and his well being, as well as his advancement,' said Bebe Bode, of Metairie, whose child is now 18.
'If the parents can come together and really open up a clear line of communication with DHH to come up better solutions, instead of just saying we need, we need, we need. It needs to be on a needs basis. It really does,' said Jamie Fletcher, of Denham Springs, whose son is four-years-old.
Some of the stakeholders and parents at the meeting believe their problem started in the legislature, that they're just not getting a big enough piece of the budget pie.
'Recreational remodeling of a sport facility? You know, come on, Louisiana. We know we can do better,' said a woman in the meeting who disagreed with lawmakers' budget priorities.
The DHH secretary says reforming programs for the disabled will help those most in need. Services should be by need not first come-first served. The four different funding waivers should be combined to one the department believes. And closing public facilities and moving services to communities and private companies is allowing more people to benefit at the same cost.
'We've saved tremendous dollars in doing that. I mean, the public rate for a state facility is actually now upwards of $500 a day, whereas for a private facility, we pay $208 a day,' explained Kathy Kliebert, the Secretary of the Louisiana Department of Health and Hospitals.
And while there has been progress, she understands for parents, updating the system is not moving fast enough.