Families appeal for empathy with state closures

Judy Lundgren was born with cerebral palsy. She lived at home under her parents’ full guardianship until the age of 14 when her needs became so demanding that she was placed in state care at the Hammond State School.

Years passed and Judy was moved around Louisiana to various locations. Three years ago she was placed in the Bayou Region Support and Service Center home in Thibodaux.

When Judy’s father died in 2006 and her mother passed in 2007, the then 55-year-old woman’s nearest relative was her older sister, Ruth Reulet of Vacherie.

Judy’s care at the state-run Thibodaux home was up to her family’s standards and the woman with the mind of a 3-year-old appeared content and well cared for.

This past New Years Eve at 7 p.m., Reulet received a telephone call from the Louisiana Department of Health and Hospitals. “We got a call stating that the state is no longer going to have these homes and they have to start looking for private companies to run them,” Reulet said. “We didn’t know what to do.”

Last week the Office for Citizens With Developmental Disabilities confirmed that plans were being made to close the Thibodaux home, as well as other facilities, and transition residents to private providers or other state centers.

The reason for the Thibodaux closure, according to state officials, was related to budget cuts and the move was designed to save $8.3 million that included the care of residents, salaries of staff and other overhead.

Reulet and other families thought at first that their relatives were being turned out into the cold. They feared that the expense of caring for their disabled relatives would be overwhelming without state assistance and feared that would happen based on their initial notification.

But state officials contend that the change in policy for housing the developmentally disabled is not as harsh as it might seem on first impressions.

According to Julia Kenny, assistant secretary for the Office for Citizens with Developmental Disabilities, plans to close state-run facilities for the developmentally disabled are not new. They date back to a 1995 federal ruling that at the time required Louisiana state officials to move residents into more integrated settings.

From there the plan has been to transition residents into the care of private providers – both commercial and not-for-profit – with the state picking up their portion of the tab through Medicare, Medicaid, Social Security and other health funds. The state would simply no longer possess and operate the physical property.

“We look at the support needs of the individual,” Kenny said. “[This closure is] part of the budget. Part of it is that Louisiana is behind others states and we are moving to be a technical assistant. More of an agent of placement.”

Families of, and caregivers for people with developmental disabilities identify them as a diverse group. Their chronic conditions – physical, mental or both – restrict patients from many daily life activities.

According to some figures the health treatment cost of caring for a person with developmental disabilities can average on the low end $570 per day. For a person with an extreme condition that expense can reach thousands of dollars a day.

The Center for Disease Control and Prevention has no Louisiana-specific data on how many people in the bayou state suffer from developmental disabilities. But based on the U.S. rate of prevalence, it is estimated that Louisiana residents with developmental disabilities number between 53,500 and 71,500.

Kenny confirmed that even an estimate does not take into consideration the number of people with undocumented conditions living at home with relatives.

Kenny said it was not her department’s intention to simply throw people to the curb. Instead she noted that the OCDD had already successfully transitioned 1,200 people from state-run facilities to private homes.

“Families are scared right now,” Kenny said. “There is comfort in bricks and mortar and what is known. We are not going to place someone where they don’t feel their needs are being met.”

Erica Null, director of marketing and business development for TARC in Houma, explained that the state making budget cuts and ending their personal running of group homes for the developmentally disabled might prove to be an opportunity for local economies to become more self sufficient.

Null said that in the case of TARC – and other organizations like it – the aim is to not only care for people but to make them as productive as possible. “This is not a resident facility. [Our participants] learn skills,” she said.

Some of those learned skills are used to provide local commercial businesses with products they need to do their work. “The reason we started out farmer’s market was to offset [state] budget cuts,” Null said.

Kenny said her office is working closely with families in an effort to make the necessary closures and liquidate property. She stressed that there was no intention of making families feel they have been left stranded.

“I could just envision [Judy] being sent across the state somewhere. I’m 63. It would not have been very easy for me to just pick up and visit,” Reulet said.

Reulet said Thursday that the Thibodaux home has now been taken over by Liberty Six, a private, long-term care provider, and most of the existing staff members were able to keep their jobs and an element of consistency for Judy and other residents.

“Now I’m 15 or 20 minutes away from her and I can just pop in my car whenever I want and go visit. The people at Bayou Region were wonderful in getting us in contact with people from other facilities.”

Reulet said she and other family members of the developmentally disabled now understand the state’s intentions, but still would have liked the announced closing of property to have been done with more personal care expressed.

“The state sometimes, unless they have to work with these type of kids, doesn’t realize it is an emotional burden on a family. I wouldn’t let my sister down for anything in the world but there was only so much that I could do,” Reulet said.

Kenny said she intends to have her office work closely with families of the developmentally disabled to cut down on confusion and head off needless worry.

“Starting this week we have families looking at what options are available,” Kenny said. [We] know [we] will have to provide some stabilization. We are working closely with families.”

Ruelet said that things are now working out for her sister. Her concern was dealing with several months of feeling that she and others were faced with state agencies that did not care.

“Things are better now. Even in her low mental state [being in the home with familiar surroundings] feels to [Judy] like an accomplishment,” Reulet said. “Because it is a place of her own.”

David Williams and Vicki Bergeron are among the adults with developmental disabilities preparing for their farmer’s market activities. Gov. Bobby Jindal announced the closing of one Lafourche Parish Association of Retarded Citizens’ center last week. MIKE NIXON