The who, what and how much of Mississippi Medicaid

Sarah Fowler | Mississippi Clarion Ledger

Show Caption Hide Caption Mississippi family talks on the benefits of Medicaid Brandon residents James and Chelsea Lamb talk about their 14-month-old son Jay Lamb. Jay was born with tuberous sclerosis, a rare genetic condition that causes benign tumors to form in the vital organs, according to his father, James Lamb.

Lawmakers among those with misconceptions about Medicaid

More than half on Medicaid are children. Who are the others?

Parents share story of 14-month-old riddled with tumors and lifelong battle ahead

Each morning, Samantha Manning rushes to get her family ready for the day. Her eldest, 13-year-old Kennedy, is involved in a number of sports. Combine that with twin 8-year-old boys, and each day is different.

Kennedy is a type 1 diabetic and goes to a small school that doesn’t have a nurse on staff. Because of the teen’s diabetes, the school’s policy demands one parent is present at all of her games.

“I work part time because she does have diabetes, and they don’t have enough trained staff to take care of her three hours away from home at a softball game in Louisiana,” said Manning, a nurse. “I want her to still be able to be a normal kid.”

Like 78 percent of Medicaid beneficiaries nationally, Kennedy is in a family with at least one member who works. In addition to Manning's part-time employment, her husband works full time.

While Kennedy’s parents work to provide things a typical active teenager needs, they don’t make enough money to cover the nearly $5,000 a month she needs in insulin and medical supplies.

The family has private insurance, but to meet the financial demands of keeping their daughter alive, Kennedy is enrolled in the state’s Children's Health Insurance Program.

The family is one of 48,102 Mississippians with children enrolled in CHIP, a branch of Mississippi Medicaid, according to the May enrollment numbers from the Mississippi Division of Medicaid.

CHIP is just one facet of Medicaid. In total, 422,239 Mississippi children are on Medicaid. They represent 55 percent of total Medicaid recipients.

Manning said she feels there is a misconception about who is on Medicaid in Mississippi.

“We’re a middle class, white family of five that lives in the suburbs of Jackson,” she said. “The price of insurance has just gone through the roof and the middle class, average, working families can’t afford it.”

'It touches everywhere'

Sen. Brice Wiggins, R-Pascagoula, chairman of the Senate Medicaid Committee, acknowledges misconceptions about Medicaid beneficiaries exist.

"I think when most citizens and legislators hear the word Medicaid, they definitely think of Obamacare," Wiggins said.

Medicaid was established in 1965 and the Mississippi division in 1969. The Affordable Care Act, or Obamacare, was signed into law in 2010.

When he first became the Medicaid chairman, Wiggins said he called a meeting for some of his fellow legislators in the House and the Senate to meet with David Dzielak, the executive director of the Mississippi Division of Medicaid, and others to get a better understanding of what Medicaid does.

Wiggins said during that meeting it appeared that many legislators did not understand the nuts and bolts of the state's Medicaid program.

"What was clear, and this is no negative, was that we as a group didn’t know all the ins and outs of Medicaid and what it does," he said. "It’s so complicated, not everyone (understands it) and not every legislator. Medicaid touches so many different agencies and so many different people — from the community hospitals to mental health — it touches everywhere. Before I became chairman, while I had a little bit of a background and kind of understood, I didn't know everything that Medicaid touched, and I can assume others didn’t."

Check out this Mississippi Medicaid math The complexities of Medicaid often contribute to the confusion of the program. Here, we break down some of the numbers for Mississippi Medicaid.

Dzielak declined multiple requests made over several weeks to be interviewed for this story.

In addition to the nearly half a million children on Medicaid in Mississippi, there are other groups of beneficiaries:

174,241 or 23 percent who are disabled or blind

70,631 people or 9 percent are classified as "aged"

68,711 or 9 percent are adults

24,787 or 3 percent under the "family planning waiver"

In total, 760,609 Mississippians, 25 percent of the state's population, were covered by Medicaid in May, according to the latest data available.

For every dollar Mississippi sends to the federal government, it gets approximately three dollars in return, the highest rate in the nation.

According to the state's legislative budget office, the state appropriated $1,017,072,580 for Mississippi Medicaid in FY 2016. In comparison, the state was budgeted to receive $4,809,012,320 in federal dollars for Medicaid funding for the fiscal year.

"Medicaid pays for people like our disabled, and in Mississippi, we have a huge disabled population," Wiggins said. "Eighty percent of our costs are driven by 20 percent of the population, which is the disabled population. I’ve heard different people and groups say we just need to get rid of Medicaid. OK, are we not going to take care of our grandmother and grandfather who (are) 90 years old in the nursing home? Medicaid pays for the nursing home."

Wiggins said he is against the idea of a "welfare state" but questioned the idea of ignoring the needs of the "less fortunate."

"Are we going to (let) our less fortunate who have no means whatsoever or are in dire situations really just fall by the wayside?" he asked.

"The cynical stretch far. People need to understand what all we have to deal with."

'Not a black and white issue'

Willie Jones, owner of the for-profit Dependable Source Home Health in Jackson, said Medicaid is a lifeline for Mississippi seniors and people with disabilities.

“When you look at the numbers, it’s cheaper, and even Mississippi knows to keep the individual at home rather than to put them in a nursing facility because the fees are ridiculous. (Medicaid) saves Mississippi a lot of dollars, but I don’t think the legislators understand that,” she said

Jones said she sees Mississippians from all walks of life who depend on the Medicaid-funded Elderly and Disabled waiver to remain in their homes instead of going to a nursing home.

Offering an example, Jones said the waiver is used in instances where people can no longer cook for themselves or clean their home but are still able to maintain a basic level of personal care. The “E and D waiver” pays for someone to come to their home and provide certain home-care needs.

“I don’t know of anyone who doesn’t have a loved one they’re caring for or know a friend who is caring for a loved one,” she said. “It’s not a black and white issue. Even our veterans are using this service. It doesn’t matter what economic class we come from, Medicaid is essential for the state of Mississippi.”

Rep. Jarvis Dortch, D-Raymond, said he feels Medicaid beneficiaries are often cast in a negative light. Some of that, he believes, is “race related.”

“There’s that old saying about black women showing up in a Cadillac with their Medicaid card,” Dortch said. “That came out of nowhere, this myth about Medicaid.”

This year legislators passed House Bill 1090, known as the Medicaid and Human Services Transparency and Fraud Prevention Act. The new law focuses on fraud by Medicaid beneficiaries, despite there being no available statistics on Medicaid fraud by beneficiaries.

In fact, Dzielak told The Clarion-Ledger Editorial Board in April, after the bill had passed, that the majority of the fraud occurs on the provider side. In the 2016 fiscal year, the Office of Program Integrity recouped more than $4.5 million in funds from providers.

Dortch spoke out against HB 1090, saying that while fraud from beneficiaries may occur, he feels some of his fellow legislators have an inaccurate perception about Mississippians on Medicaid.

“I feel like that there is this thought that there are a lot of adults who are just sitting around getting Medicaid, when the majority (of recipients) are children,” he said.

Wiggins said that in a state like Mississippi, Medicaid is far-reaching.

"Medicaid includes all races. It includes disabled. It includes children," he said. "The biggest portion of people on Medicaid are children through the CHIP program. Do we not want our kids to be treated? ... I think most people would argue, and I would argue, that we do need healthy children."

'Not just supporting deadbeats'

One of those children is 14-month-old Jay Lamb. Jay was born with tuberous sclerosis, a rare genetic condition that causes benign tumors to form in the vital organs, according to his father.

A fetal scan detected tumors in his heart. In the weeks and months after his birth, his parents, James and Chelsea Lamb, made trips to a specialist in Birmingham every six weeks.

Last October, an EEG revealed seizures were imminent. To combat seizures, Jay is on a medication that costs $14,000 a month.

Over the course of his life, Jay could develop additional tumors in his brain and kidneys and experience lung problems. He currently has numerous tumors all over his brain.

“He’ll have monitoring of his kidneys and all of his vital organs all of his life to make sure the tumors don’t grow and cause problems,” James said.

He said his son is “behind for a 14-month-old developmentally” and is in speech therapy, occupational therapy and physical therapy.

On Easter Sunday, Jay suffered a violent seizure that lasted at least 15 minutes. He spent two nights in the hospital.

In an unrelated issue, Jay recently had surgery on his feet to correct congenital vertical talus, a foot disorder that affects 1 in 10,000 people.

James and Chelsea have full-time jobs. Each has private insurance. James is an accountant, and Chelsea is a dental hygienist. When Jay was an infant, they agonized over whether one of them would quit their job to stay home with Jay or if they would put him in daycare.

Under the Disabled Child at Home Program through the division of Medicaid, also known as the Katie Beckett Waiver, which was signed under President Ronald Reagan, Jay was able to qualify as a Medicaid beneficiary.

James and Chelsea made the decision to place him in a physician-prescribed daycare in Flowood with a nurse ratio of 3 to 1 and where all of his therapists come to him. Without Medicaid, the daycare costs about $400 a day.

“That was out of our reach, out of most people’s reach, but Medicaid pays for it and covers it,” James said.

If Chelsea had decided to stay home with Jay, the couple would have likely left Mississippi and moved back to their native North Carolina. Her insurance is better than James', and the couple would not have been able to afford the medications and therapy for their son if she had stayed home. Chelsea’s private insurance covers all but $45 of Jay’s $14,000 seizure medication.

In the last year, Jay has had six EEGs, multiple trips to Birmingham, an MRI of his brain and an MRI of his spine. In addition to his regular pediatrician, Jay sees two neurologists (one local and one in Birmingham), a cardiologist, a nephrologist and an eye doctor because his seizure medication runs a risk of vision loss.

James said he and Chelsea didn’t originally talk about Jay’s condition or being on Medicaid, choosing to keep it private. However, they want to tell people about Jay’s condition because “if we don’t talk about his condition, it’s going to continue to be a rare condition.”

Private insurance does not cover all the necessary therapy or the daycare.

"Regular insurance typically doesn't cover very many therapy visits in a year — six, eight, if you're lucky, 12," Chelsea said. "He needs therapy every single week. The therapy that they do may help limit any of the problems associated with autism, if he does get that. They're helping him develop."

James said the misconception about Medicaid is prevalent in Mississippi.

“People want to create this image of this deadbeat sitting around collecting government assistance, and that’s not what most of them are,” he said. “Most of them are children. You’ve got children, people with a disability, people who are low income and they may still be working, but they are not making enough to afford the care themselves.

“It’s not just supporting deadbeats; it’s helping children, helping people who are most vulnerable who really need it.”

Chelsea said that before she had her son she didn't think she would ever have a reason to use Medicaid.

"I was probably one of those of people who thought, 'I am never going to have to use Medicaid. We work really hard. We have good jobs. We have insurance. This isn't something that we need to worry about.' But the fact is, we did," she said. "I think a lot of people may feel the same way, that it's not benefitting them, but that safety net there could benefit them or somebody that they know and that they love."

'Mississippi is going to lose, big time'

Richard Roberson, general counsel, vice president for Policy and State Advocacy with the Mississippi Hospital Association, said hospitals throughout the state rely on Medicaid dollars to provide quality care. Medicaid patients make up 15 to 20 percent of all of the patients in Mississippi hospitals, he said.

"Medicaid serves young and old, different races, different genders," Roberson said. "I think we have to be really careful about forming any preconceptions about the people who are receiving Medicaid services. The Medicaid population represents all citizens in the state of Mississippi. They are people in our communities and our neighbors. They're Mississippians."

At University Health System, home to the University of Mississippi Medical Center and Mississippi's largest and only teaching hospital, the majority of patients are on Medicaid.

According to data provided by UMMC, 42.5 percent of adult patients are on Medicaid, 29.4 percent of adult patients are on Medicare, 18.4 percent have commercial insurance and 9.7 percent are self-pay.

UMMC is also home to Batson Children's Hospital, the only children's hospital in Mississippi. Of UMMC's pediatric patients, 84.3 percent are on Medicaid, 13.9 percent have commercial insurance, 1 percent are on Medicare and 0.8 percent are self-pay.

Gary Marchand, president and CEO of Memorial Hospital at Gulfport, said the majority of the hospital's Medicaid patients are children who fall under CHIP.

“As a hospital organization, we’re very well aware that about 30 percent of the state’s residents are Medicaid eligible,” he said.

Marchand said 20 percent, or 3,400 people, of the hospital’s admitted patients are Medicaid beneficiaries. Of the 3,400 patients, 1,600 are under the age of 18.

Under outpatient services, such as emergency room visits, x-rays, cat scans, mammograms and ultrasounds, 15 percent, or 25,000, of patients are Medicaid beneficiaries. Of the 25,000, Marchand said, 14,000 are under the age of 18.

The worry about Medicaid cuts is ever present, he said.

"We have to get the cost from somewhere," Marchand said. "The nurses don’t work for free, medical techs don't work for free, the bed covers aren't free, pharmaceuticals aren't free. Whether it’s a labor and delivery dollar, a benefit dollar or a pharmaceutical dollar, somebody has got to recover the cost, or our service availability is going to get impacted."

Under both the House and Senate GOP health plans, Mississippi could be at risk of losing its current federal match. Both plans slash Medicaid funds and replace them with block grants, capping the number of federal dollars spent on Medicaid and likely leaving states on the hook financially.

What that would mean to Mississippi is unknown.

While the specifics aren't yet clear, parents like Lamb are terrified that block grants could mean an end to programs like the Disabled Child Living At Home.

“If they go to block grants, Mississippi is going to lose, big time,” Lamb said. “I don’t know what population they’ll decide (to cut), but it scares me to death. It would be unpopular to shut out the disabled side, but it might be easier because the Disabled Child Living at Home program is not income-based. You could have a parent making minimum wage or a million dollars a year.

“Hopefully the biggest challenge he’ll face in life is seizures. I can’t imagine having to be faced with not affording medical care. I can’t imagine that, but if Medicaid gets cut significantly, then that’s what will happen.”

Contact Sarah Fowler at 601-961-7303 or sfowler@gannett.com. Follow her on Facebook and Twitter