When Bob Rule fell off a third-floor balcony a month after he turned 21, he knew as soon as he hit the ground something bad had happened.
In fact, two of his lower vertebrae had broken, leaving him a quadriplegic with the use of his arms, but not his hands and legs, reports The Kansas Star.
Instead of being confined to his bed, however, Rule, 51, went on to live a life most could relate to: He drives a modified van from his home in Parkville to a Kansas City door company, where he works as a project manager. A home care attendant helps him for about two hours in the morning. Rule plays with and feeds his beloved 12-year-old miniature Schnauzer Elli by himself.
Now the life he has made for himself is at risk, because the state program that pays for his home attendant will run out of money this month. The funding allows non-Medicaid eligible Missourians with severe disabilities to get the basic care they need to remain independent of a much more expensive nursing home.
He is scared for his future.
“I can’t imagine what it’s like for people who can’t get on this program,” Rule said, sitting in his wheelchair. “They are destined for a life of nothingness, really.”
The NME (non-Medicaid eligible) program was set to expire in June. Lawmakers voted to renew it through 2025, adding a required monthly premium. But legislation to do so only gained traction in the final week of the session, after House members slipped it into a Senate bill along with other healthcare-related measures.
By that time, however, the state budget was already approved.
Rule’s disability service provider, The Whole Person of Kansas City, which supplies the state-funded home attendant, was told by the Missouri Department of Health and Senior Services (DHSS) that the little money set aside to settle invoices runs out this month.
ONLY 25 RECIPIENTS LEFT
Since the state will no longer reimburse claims, providers are now scrambling for ways to care for their clients while waiting for lawmakers to decide whether to fund the program again.
DHSS requested in October for a supplemental appropriation of about $505,000, which legislators will consider in the session that begins in January.
However, any legislative action next year will still mean a potential lapse in care. For a person with a severe disability, that can mean languishing in bed, losing a job, or even dying alone at home.
The program, which started in the 1980s, stopped accepting new participants after 2005. Most recipients have been moved into a nursing home, become eligible for the same services through Medicaid, or have died.
That has left Rule among the remaining 25 recipients, scattered across the state. They aren’t eligible for Medicaid because their assets exceed $250,000, which may include retirement savings, a paid off home or a handicap-accessible vehicle.
State budgeters allowed the program to be defunded this year because they thought lawmakers wouldn’t pass the necessary legislation to renew the program in time, according to state Rep. Cody Smith, R-Carthage, who heads the Missouri House Budget Committee.
Now that it is renewed, the odds of a supplemental appropriation, as well as the funding for another budget year, are much better, Smith said.
“I anticipate that the conditions are favorable,” he said.
Since Rule is its sole client using the program, The Whole Person plans to cover his services with the hopes that it will get paid back if and when lawmakers approve a supplemental appropriation, its CEO Julie DeJean said.
“At this point, we are not going to let Robert down,” DeJean said. “He’s been with us a long time and I think we can work through this.” Rule says he receives about $1,000 a month to supplement what he pays out of pocket for his home health assistance.
State officials said they will try to help.
“The Department is currently in the process of working with NME (non-Medicaid eligible) providers and eligible participants to attempt to coordinate continued services through either the NME program or alternative programs,” Lisa Cox, DHSS spokesperson, said.
‘A SAFETY ISSUE’
However, other disability service providers are not so optimistic.
Paraquad, based in St. Louis, serves five NME clients. With its razor-thin margins, it can’t afford to assume the cost of care, which would amount to thousands of dollars, according to Kim Lackey, Paraquad senior director of public policy and independent living.
Their clients don’t have many options for home help, either. Private insurance often doesn’t cover home help, Lackey said.
The state, through Medicaid and this program, are “the only game in town,” Lackey said.
Possibilities to maintain service include fundraising.
“As far as specific development/fundraising activities, we are exploring all options to try to protect funding now, but we will likely be seeking funding support in the near future,” Lackey wrote in an email.
One of Paraquad’s clients out of luck is Lisa Petty.
Petty, 56, has had cerebral palsy her whole life, and now has two blood disorders–one that keeps her platelets from clotting and another that prevents her blood from absorbing iron, leaving her perpetually anemic.
“With all of this combination, I’m not physically not able to provide all my personal care needs like dressing and toileting,” said Petty, who doesn’t qualify for Medicaid because of her retirement fund.
Her home attendant also does housekeeping and meal preparation, and goes shopping with her. As a wheelchair user, Petty can’t reach items on higher shelves or hold her own bags.
On Saturday and Sunday, she tries to make it on her own. But she has already re-injured a foot she had surgery on after falling while trying to use the toilet by herself.
“If I’m in the house by myself, the doctors are concerned because it’s a safety issue,” she said.
Petty works 10-hour shifts Monday through Thursday for a large private insurer, where she gets the health insurance and the income to pay off medical bills. On Friday, she spends 8 hours getting blood infusions. She expects her health will only continue to deteriorate, making her working days numbered.
Her only living relative close by is her 81-year-old mother, who has a heart condition.
“She can only do so much,” Petty said.
Once she passes, Petty’s plan is to use the retirement fund to move to Florida, where other relatives can help care for her.
She said Missouri’s “current political climate” makes the alternative–spending down her savings and relying on Medicaid as a safety net– risky.
A DRIVE FOR MEDICAID EXPANSION
Missouri is one of the most restrictive states when it comes to Medicaid eligibility. This year, the state cut funding that would go toward new Medicaid patients, which has created a waitlist for those with severe developmental disabilities who need around-the-clock care to maintain independence, according to The St. Louis Post-Dispatch.
It’s one of the 14 states that have chosen not to expand Medicaid eligibility, even though 90 percent of the cost would be paid by the federal government. A drive to place expansion on the 2020 ballot, extending it to those who make up to $18,000 a year, has attracted support from the healthcare industry and collected more than a quarter of the required signatures. But there’s no guarantee Missouri voters will pass the measure.
Plus, if the state were to decide a person with disabilities is no longer eligible for benefits, winning them back has become nearly impossible, Legal Aid of Western Missouri has found. The win rate for appealing disability cases has diminished from 54 percent in 2017 to less than 20 percent as of April this year.
“If I get rid of the cushion I have, what happens? If I take care of my needs right now, I don’t have a cushion to keep somebody paid,” Petty said. “If that money is gone, then what?”
Petty said she plans on asking her home care attendant if she will take a temporary pay cut.
“If she doesn’t accept that offer, I don’t know what I’m going to do,” Petty said.
“I’m taking it one day at a time.”
Although the top concern for NME participants is to get through the next year, the specter of 2025, when the program is set to expire, hangs over Rule.
Currently, Rule’s retirement savings keep him ineligible for Medicaid.
Would he move into his sister’s home, which is not as accessible as his current one? Would he be relegated to life in a nursing home?
“Do I become a ward of the state?” Rule said. “And then how much would that cost them?”
He cut back on his home care attendant’s tasks after the state reduced the amount each participant receives two years ago. Now, an attendant visits just to help him in and out of bed every morning. His “bath and bowel” routine has been limited to three times a week. His sister makes a month’s worth of meals, which he keeps frozen, so he doesn’t have to go shopping or try to cook.
Still, the program allows him to stay in his house, where his cups and plates are stored in the bottom cabinets within reach. He gets to watch baseball and hockey, rooting for the Calgary Flames because they are affiliated with the Kansas City Mavericks. His kite-flying supplies remain stored in his garage for when he decides to take up his favorite hobby again.
“I’m appreciative of what The Whole Person has done for 30 years,”he said. “But the thought of it all going away really scares me.”