Kelvin Hudson was dying of terminal colon cancer. The 61-year-old former roofer, carpenter and “Jack of all trades” knew he wanted to die at home, instead of in a hospital or nursing home.
But there was a problem.
Doctors refused to discharge the dying man from the hospital unless Medicaid would provide both “personal care” and “hospice care” for his end-of-life needs at home. Under the rules, Medicaid would only pay for one service or the other, but not both.
Hudson’s plight convinced the Jindal administration to make an exception. Hudson died at home in October.
Now, the administration is changing the rules for other patients in a similar predicament. About 200 terminally ill Medicaid patients annually can continue to receive services at home, so that they can die at home surrounded by family and friends.
“He was not a political person or a fighting person. He always helped someone anyway he could,” said Hudson’s sister Lydia Hudson Givens. “I’m pretty sure he’s happy he made a difference. He’s more than happy in his spirit.”
Hudson, of Baton Rouge, and his sister challenged the state hospice policy with help from The Advocacy Center after getting no relief from the state health agency.
Hospice is designed to maximize comfort for the terminally ill by reducing pain and addressing physical, psychological, social and other needs. Personal care provides basic needs when family members are at work and unavailable to provide care.
“When we were made aware of the Hudson case I made a decision to make an exception,” said Kathy Kliebert, secretary of the state Department of Health and Hospitals. “We also realized the need to do it as an emergency rule” so others could benefit,
She said the emergency rule will stay in place until permanent rules can go through the normal approval process.
Kliebert said the rule change will save DHH an estimated $600,000 during next fiscal year because in-home hospice care costs less than that provided in a separate facility.
Nell Hahn, a lawyer with the Advocacy Center, said the state did the right thing.
Under Medicaid rules, individuals receiving home-based services through programs such as Community Choice had the option to get hospice care, Hahn said. But those getting personal care services didn’t, she said. Hahn said her agency has made comments about the disparity as hospice rules came up for review at various times during the last year. But nothing was done until the Hudson case, she said.
The Advocacy Center, based in New Orleans, is a non-profit corporation that serves people with disabilities, providing information, referral and at times legal representation on issues impacting them.
Before the Medicaid rule was changed, it stated: “Individuals who are approved to receive hospice may not receive any other non-waiver home and community-based services, such as long-term personal care services, while they are receiving hospice.”
Givens, on Hudson’s behalf, involved the Advocacy Center in September 2013. Then followed a letter to the health agency from Advocacy Center attorney Debra Weinberg “letting them know it’s not legal and not moral what they were doing,” said Givens.
In the letter, Weinberg said making Hudson choose between receiving personal care and hospice services violates federal Medicaid law and regulations as well as the Americans with Disabilities Act.
“We got them to provide the services so he could leave the hospital. Unfortunately he only got the services for less than a week,” Weinberg said. “But the main thing is he was able to pass at home with his family.”
Hudson was a father of eight, grandfather of 19 and great-grandfather of one child.
“I honestly don’t know what it was that changed it (the rule),” said Weinberg. “Everyone who heard his story said ‘of course, he needed that.’”