Lillian DeJean has more on her plate than the average 13-year-old girl.
The Lafayette teen starts her day with a round of pills, a “cocktail” of liquid medicine delivered directly to her small intestine via a rubber tube and a few minutes on her ventilator to help regulate her breathing. Some days, she’ll also have to do a saline infusion that is pumped into her chest port located just below her collarbone.
By noon, she has to do it all over again.
Lillian has a degenerative condition — mitochondrial disease — that prevents her cells from properly creating energy for her body and requiring around-the-clock care. Despite the overwhelming obstacles, both physically and financially, Lillian’s family has managed to carve out a sense of balance and normalcy made possible by a government program that allows her to receive daily medical support at home — instead of a state-owned institution.
Middle-income families like Lillian’s who are on the New Opportunities Waiver and other similar waivers use the government program to receive Medicaid coverage for home support staff for those with severe physical and mental disabilities. These waivers — which specifically waive the low-income requirements associated with Medicaid — are in danger of being scaled back or cut entirely, as the state Legislature continues its work to fill a historically large $900 million budget shortfall, while bracing for another $2 billion hole for the next fiscal year.
Lillian and other children and adults reliant on the waivers have visited the state Legislature every day of the special session so far, urging legislators to keep the programs intact so their families can stay whole.
Mitochondrial disease means Lillian gets exhausted by regular tasks like going to the grocery store or walking around a school campus. She has been home-schooled for the past three years, which was right around the time she started experiencing more severe symptoms. Regular childhood illnesses turn into serious prolonged hospital stays. A recent viral infection in her mouth and throat has led to complications that has left her stomach only semi-functional.
But the bright-eyed eighth-grader is undeterred by her condition and strives for normalcy. She loves to read and write. She plays the drums and is teaching herself the ukulele. She wants to be a surgeon when she grows up because she’s gained a fascination for the human body.
“I’m 13 years old and I know I shouldn’t have to be worrying about all of this medical stuff, but the thing is, very few things scare me,” she said in a lilting voice, while gripping a zombie slayer hardback book in her lap. “But this, I am scared witless about this. I’m so terrified they are going to cut it. This will just break so many families and so many people’s futures.”
Lillian qualified for the waiver three years ago, which means she gets two support workers to come to her home and help her parents with medical care and supervision. She can’t be left alone, so without the extra help, her mother would quit her job as an early interventionist again to watch over Lillian full time.
But her mother, Nicole DeJean, is now able to work two days a week, which is much-needed since the family still incurs about $1,500 in out-of-pocket medical expenses a month, which includes travel costs to see her seven different specialists in New Orleans and Houston on a regular basis.
DeJean said the tally for Lillian’s medical claims were about $450,000 in 2014 and $290,000 in 2015. Those costs were covered by a combination of their private insurance and the Medicaid coverage extended to them through the NOW program.
DeJean said her husband’s midlevel income at Acadian Ambulance makes them ineligible for other subsidies, but the crushing medical costs without the waiver would bankrupt her family.
“We wouldn’t be able to support ourselves with medical costs for even a year,” DeJean said, adding that she’s worried about her daughter being able to live alone in the future without the waiver. “Lillian would have more hospitalizations. There’s just so many consequences.”
The NOW program serves about 8,700 children and adults, which is projected to cost the state $450 million this year. But there’s a waiting list of 13,000. The average cost per family is $52,000, said Mark Thomas, Department of Health and Hospitals assistant secretary.
Absent the waivers, many people would have to quit their jobs to care for their loved ones. It also means some people receiving home care would have to be institutionalized, which is far more expensive for the state, Thomas said.
“We know it would cause a financial hardship,” Thomas said. “Community-based living is the best practice, and we want to give individuals a choice to live with their families.”
When Jamie Duplechine, now 36, was a teenager, she flipped a Geo Tracker and broke her neck. She’s now a quadriplegic and requires constant assistance.
“I need someone to feed me, to brush me teeth,” she said. “I have to ask someone to scratch my nose.”
But the NOW program allows her to live independently. Without the program, she said, she’d have to live in a nursing home because her parents are too elderly to provide her assistance.
“As a quadriplegic, I sometimes already feel like a prisoner in my own body because I can’t get up and do what I want for myself,” said the Lafayette resident. “But with these services, I have hands and feet, and they’re able to do things.”
State officials have warned that without new taxes this fiscal year, all Medicaid waivers providing home service for almost 12,000 disabled people would be eliminated.
Thomas said the NOW program is the highest priority and will be restored first as funds are made available, but there are other waivers that also are on the chopping block. And for the 2016-17 fiscal year that starts July 1, three of the four waiver programs are unfunded and in danger of being cut if lawmakers are unable to close the $2 billion shortfall. The NOW program is funded in the next fiscal year.
One of the programs on the chopping block for next year is the Children’s Choice waiver, which is similar to the NOW program, except that it has a $16,000 a year cap.
Many people waiting for the full “Cadillac package” of the NOW program will settle for the Children’s Choice, which serves about 1,250 people and costs the state $12.7 million this year.
Baton Rouge mother Ashley McReynolds said she’s nervous because the Children’s Choice waiver is even more at risk than NOW. McReynolds’ 9-year-old son has a rare condition called Prader-Willi Syndrome, which means he’s in a constant state of starvation.
The family has steel locks on the refrigerator and trash compactor and an electronic keypad to the pantry. If her son Cooper, who also suffers from some developmental and behavioral delays, was left to his own devices, he would eat himself to death.
Cooper was on a waiting list for a bed at specialty hospital in Pittsburgh before they were accepted to receive the Children’s Choice waiver.
“I was able to say, ‘I don’t need this anymore because I have support at home, and he is thriving at home,’ ” said McReynolds, who also is the capitol region director for Louisiana Citizens for Action Now, an organization that advocates for individuals with disabilities.
Cooper gets support from three workers who come and help him ration food, take his medicine and handle regular tasks when he’s not at school at Broadmoor Elementary.
“This allows us to survive,” McReynolds said. “It’s not a luxury program. This allows us to remain whole.”