De-Institutionalizing Louisiana, Part One: Waivers vs. Facilities

Apr 15, 2013

Louisiana's efforts to move more individuals with developmental disabilities out of congregate living and back into the home with supports actually started pretty late compared to the rest of the country.

In the 1980s when other states were beginning to shut down their large, state-run facilities as part of the national de-institutionalization movement, Louisiana was still building. Only in 2005, after Hurricane Katrina forced the shutdown of the New Orleans metropolitan facility did the state start ramping up its de-institutionalizing efforts.

This is the first of a two-part series exploring the progress of that effort over the years since.

Making the Case: Roberta Fontenot

Seventy-year-old Roberta Fontenot has lived in the Spanish Oaks Apartment complex in Baton Rouge since 1988. Fontenot has a mild developmental disability. A support worker typically comes by three times a week to help with things like getting groceries and paying bills. But otherwise, Fontenot is pretty much on her own.

Roberta Fontenot, 70, once lived in the state's largest institution for individuals with developmental disabilities. She now lives in her own apartment on waiver supports.
Credit WRKF

It is this kind of quasi-independent living situation the state wants to see more of for the developmentally disabled. But Fontenot hasn’t always lived like this.

In 1964 the state removed Fontenot, then 25, from her home in Villa Platte and placed her in Pinecrest State School in Pineville, Louisiana. She lived on a ward with about 16 other people and they did everything as a group - they ate together, even woke up and went to bed together.

"We watched TV but if one punished, everybody get punished. TV stayed off. Radio stays off. Can’t listen to nothing," said Fontenot.

Pinecrest, which has been accused of alleged abuse and maltreatment of its patients in the past, did not return WRKF’s call for comment on Fontenot’s recollections of living there.

After living in two different foster homes, Fontenot moved to another group home in Baton Rouge in 1974 where she lived with 14 other women with disabilities. There Fontenot met Amy Drago, now the program director of The Arch of Baton Rouge, a non-profit that advocates choice for individuals with developmental disabilities. Drago said Fontenot is a very private person and congregate living was just not working for her.

"She was getting angry a lot and snapping at them so she’s very excited when we helped her move out and it was difficult to find a place that she could afford, that was safe, that was in walking distance of her work. But she found all those things," said Drago.

"This is better than Pinecrest and two foster homes," said Fontenot. "This is better."

At Issue: The Best Way To Provide Care

Quasi-independent living has worked out well for Fontenot. The state says it’s also a cheaper for them in the long-run. State Department of Health and Hospitals Interim Secretary Kathy Kliebert said the state pays for home-based services throughout what's called a "waiver", which costs about $54,000 per-person per-year. Kliebert, who is also a former assistant secretary of the Office for Citizens with Developmental Disabilities, said the state didn't even have it's first waiver until 1994.

"State facilities now cost almost $300,000 a year per person," said Kliebert. "Private facilities cost, and again it depends on acuity, but basically between about $60,000 to about $75 to $80,000 per year."

But Rosalind Auzanne, the Regional Director of Housing and Disabilities  for the Volunteers of America, said living quasi-independently with a waiver is not for everybody.

"There’s some people who physically cannot do it, who intellectually cannot do it," said Auzanne.

Auzanne said if someone is living on waiver supports, the state is only paying for those supports - nothing else. She said this is why immediate residential care facilities are still needed, such as the three her organization oversees in the Baton Rouge area. To provide 24-hour around-the-clock care paid for by the state.

But Auzanne said her organization and others like them have seen a steady decrease in their budgets and year after year, they’re forced to do more with less.  

In Part Two we visit St. Mary’s Residential Training School in Boyce, La., to look at how the state's goal to de-institutionalize is affecting their ability to care for the developmentally disabled.