La. officials try to shrink disabled services wait

Louisiana’s health chief is looking for ways to trim the 10,000-person waiting list for a program that provides in-home services to the developmentally disabled, including prioritizing the list to ensure those with the most dire needs get help first.

Kathy Kliebert, secretary of the Department of Health and Hospitals, is also looking for other ways to chisel away at the waiting list for the New Opportunity program, known as NOW, because no new money is available to spend. That could include shifting some people away from NOW and to other, cheaper programs where families can get the services they need more quickly.

The $417 million program, paid for with state and federal Medicaid funding, can help families pay for specialized equipment and supplies, nursing services and at-home care.

NOW’s lengthy waiting list gained attention when Gov. Bobby Jindal vetoed $4 million from this year’s budget that would have added funding for 200 people to the program that now serves about 8,000.

Jindal said lawmakers didn’t provide enough money to pay for existing health care services, so expanding the program was unworkable. But that was a difficult sell to families who have been waiting eight years or more for services.

Relatives of developmentally disabled children and adults whose needs range from modest help to around-the-clock care plead with legislators for more funding each year, often bringing children in wheelchairs to the Capitol and tearfully describing their wait for assistance.

Kliebert said the Jindal administration has worked to steer money away from state-run institutions for the disabled to services that keep people at home or in their communities, with family and friends. But she called the NOW waiting list misleading because it hasn’t been prioritized.

“I can’t get to the person who really does need services today, and that’s the frustrating part to me,” Kliebert said.

Parents put their children on the list years before they might need care _ fearing their children’s conditions will worsen – because they’ve heard that the wait is so long. But that only lengthens the list and makes it more difficult to determine who needs immediate help.

Fifty-five percent of people who are offered a NOW slot don’t take it, Kliebert said, but the decision-making process delays services to the next person in line.

“I know people whose children are not even a year old, and at this point, they are advised to get on the waiting list. They wouldn’t even be eligible until their child is 3. But they’ll get on the waiting list because they know it takes 10 years to get services. That’s just an absurd system,” said Kay Marcel, a New Iberia advocate for the developmentally disabled.

Marcel’s 34-year-old son, Joel, has Down syndrome and receives services through NOW, which help him maintain a recreation department job. The program also provides help at Marcel’s home if both she and her husband are away.

Marcel said her son had a 10-year wait to get NOW help.

Kliebert is talking with parents who have a child on the waiting list and advocates for the developmentally disabled about ways to do a better assessment of a person’s need for state-supported care so that she can prioritize the list.

“There are some people on that list that absolutely do not need services today, and are not going to need it five years from now,” she said. “We’ve got to plan to proceed in some way to change that list to where it becomes a list that’s truly meaningful.”

The health secretary also said some people may never need services from NOW and could be directed to other programs where space is available. Kliebert also is considering consolidating some programs to make it easier to steer people to the appropriate services.

Marcel attended a recent “stakeholder meeting” to trim the NOW waiting list.

She said she was encouraged, but she acknowledged she hasn’t heard anything since that meeting.

“For the advocates and the families who are on the waiting list, these changes that were talked about at the meeting can’t happen soon enough, so we need to get busy,” she said Thursday.