From the moment Angela York wakes up to the time she goes to sleep at night, she has one job: taking care of her daughter, Shanda.
Shanda York, of Carl Junction, was born with spina bifida and hydrocephalus and had to undergo numerous surgeries in the first three months of her life. Now, as a 23-year-old, those conditions prevent her from taking care of herself or walking without help. Her memory also not as sharp, she said.
“It’s like I’m drunk,” Shanda said.
Because of Shanda’s conditions, she qualifies for Medicaid and can pay an attendant (in this case, her mother), which allows her to live at home instead of moving into a more expensive nursing home.
But unless Missouri lawmakers restore cuts made to the budget this spring — cuts affecting thousands of people who receive in-home and nursing home care — services for Shanda and the others will be reduced. And Angela, along with looking after Shanda, will have to get a second job.
Both are hoping funding will be restored as lawmakers convene Sept. 13 in Jefferson City for a veto override session and possibly convene in a special session and pass a new budget plan.
On Thursday, Lt. Gov. Mike Parson requested the Legislature vote itself into a special session during the veto session to deal with several issues, including funding for in-home health care and nursing home patients. The Missouri Constitution requires lawmakers to convene in September to consider overriding gubernatorial vetoes.
The budget that took effect July 1 cut Medicaid-funded personal care services, such as bathing and grooming assistance, for about 8,300 people with disabilities. One of the bills that Greitens vetoed earlier this year would have avoided those cuts by authorizing Greitens’ administration to sweep $35 million out of various special state funds to pay for those services. Greitens called it “an unconstitutional, one-time fake fix to a real problem.”
The budget cuts mean reducing the number of hours that in-home patients like Shanda can use an attendant by 40 percent. The number of hours Angela will get paid for helping her daughter will be cut from around 11 to about 7 per day under the budget.
State funding cuts also mandate that nursing homes be reimbursed 3 percent less for Medicaid patients, meaning some nursing homes will lose hundreds of thousands of dollars in annual revenue.
“I understand difficult choices have to be made concerning state revenue and programs,” Parson said this week. “However, I feel it is critical to restore funding to those who call Missouri home and cannot care for themselves.”
Senate President Pro-Tem Ron Richard, R-Joplin, said though he will ask senators to vote themselves into a special session, it requires 75 percent of the members in the Senate and House to agree.
Lawmakers now are working on an alternative plan, including the possibility of cutting a tax credit for low-income seniors and disabled residents who live in rental housing and diverting the savings to the personal care program — an option already endorsed by House members during the regular session. Richard said House and Senate leaders are working to find a solution they can present to the governor.
Speaker of the House Todd Richardson, R-Poplar Bluff, also said in a statement the House is working closely with the Senate to find a funding fix.
“My colleagues in the House made it a top priority during our regular session to find a viable solution that would allow state assistance to continue for disabled Missourians who need in-home and nursing care,” Richardson said in a statement. “We continue to be ready and willing to develop a fiscally responsible answer to this serious problem.”
Senate Majority Leader Mike Kehoe, R-Jefferson City, said it “literally could be a life and death issue that we may be wanting to take up.”
Richard noted that the governor also can call a special session, which he has done twice this summer to address other issues.
Attempts to reach Greitens for comment last week were unsuccessful.
“If the governor doesn’t, I’d be willing to try to call ourselves in,” Richard said of the special session. “I think the Senate believes that throwing these people out is unacceptable, and we’re looking for a fix.”
‘That’s my baby’
Besides bathing and grooming assistance, Shanda said her mom cooks for her, makes sure she doesn’t fall, stretches out her limbs to make sure she’s flexible, gives her medication and drives her to her medical appointments.
On Wednesday, Angela woke up Shanda at 5 a.m. for a doctor’s appointment at 7 a.m. that day; early morning appointments are a must for Shanda, who gets sick in the heat because her medicine raises her body temperature.
“But then I fall a lot in the cold,” Shanda said, referring to the ice and snow in winter.
Angela said she also makes trips with Shanda to the mall to keep her in good spirits. Her favorite store, Romancing the Stone, sells crafts that Shanda uses to make jewelry, which also helps with her fine motor skills. Shanda said she is waiting until Christmas to get more craft items because of budget constraints and added that she’s worried about her mom having to get a second job.
“She shouldn’t have to do that to take care of me,” Shanda said. “But that’s pretty much what it’s (come) to.”
Angela said that if she has to get another job, she will have to get her mother to come from Erie, Kansas, to watch Shanda, and that’s not an easy job that most people can do.
“Any time anyone has done (catheter) care on her, she’s gotten really ill,” Angela said. “No one else can help her.”
Angela said she won’t contemplate the idea of putting her daughter in a nursing home.
“No,” she said, without missing a beat. “That’s my baby.”
Jeff Flowers, executive director of Joplin’s Independent Living Center, said the cuts have caused other complications for those who need care.
“There is more trouble finding attendants now because the hours aren’t there to offer them,” Flowers said.
With the state budget cuts, all 22 Independent Living Centers in Missouri have been affected, Flowers said, noting they longer offer some services, such as home repairs, other than the state-mandated minimum.
The Joplin center helps more than 1,600 people in Jasper and Newton counties, and at least 700 receive attendant services through Medicaid.
“They are having to choose whether to be have a meal made or clean clothes,” Flower said, citing the cutback in hours.
Nursing homes are suffering as well because of the budget cuts, according to area administrators.
At Joplin Health and Rehabilitation Center, administrator Terri Milsop said she will have to cut staff because the 3 percent cut in reimbursement from the state means losing out on $118,000 a year. There are more Medicaid patients at centers in Webb City and Carthage, Milsop, said, which means they have bigger shortages to wrangle.
“They are really sick, the patients we take care of,” Milsop said. “Our job is to make this as home-like as possible.”
Sue Joslen, administrator at St. Luke’s Nursing Center in Carthage, said that because of the cuts, the center will receive $100,000 less for taking care of about 70 patients in the home who are on Medicaid.
“I’ve been here (at St. Luke’s) for 41 years,” Joslen said. “This is the first time I’m struggling with how residents do not suffer from this.”
Joslen said her best bet to save is to pull back on recreational activities, but even then, she’s worried about quality of life for residents.
Sitting in a lobby reading a detective novel, Beth Watson, 53, has been a resident at St. Luke’s for six years. She has multiple sclerosis and Charcot-Marie-Tooth disease, a hereditary condition that makes her wheelchair-bound and unable to care for herself. Her family, most of whom have less severe forms of CMT, can still visit her and help her if she needs anything.
“I know I’m going to be OK,” Watson said. “But there’s a lot of people in nursing homes that have nobody but the staff.”
Both Milsop and Joslen described the cuts to nursing homes with one word: “devastating.”
After attending the Missouri Health Care Association meeting in Branson two weeks ago, they heard from other administrators who said the cuts collectively mean thousands of jobs could be lost and some smaller nursing homes could be forced to close.
Both have been talking with their area representatives about moving toward a special session to restore funding. Angela York said that she’s also been calling her local representative, state Rep. Bill White, R-Joplin.
White said he called on the governor to bring lawmakers in for a special session more than a week ago and said he is a proponent for taking money from the state’s supplemental reserves to restore the funding.
“I think there is a role the state needs to play in this,” White said. “I think we have an obligation, a moral obligation; these people have no other choice, and they have nowhere to go.”
State Reps. Charlie Davis, R-Webb City, and Cody Smith, R-Carthage, said they would vote for a special session if it came up during veto session.
However, talk of a special session means lawmakers will have to rehash disputes that led to the funding shortfall in the first place, including the tax credit for senior renters, known as the “circuit breaker.”
Senators, especially Democrats, balked at that plan, saying it also would lead to fewer seniors being able to live independently. Last week, House Minority Leader Gail McCann Beatty, D-Kansas City, said Democratic support for a special session depends on what is proposed. She also reiterated opposition to cuts to tax credits for low-income seniors and disabled residents.
Republican House Budget Chairman Scott Fitzpatrick, R-Shell Knob, said he’s been researching a potential fix and said any plan taken up in the veto session needs to consider rolling back the tax credit.
“I think that any plan that’s going to be taken seriously at this point in my opinion has to include or be based on that,” Fitzpatrick said.
Along with Richard, state Sen. David Sater, R-Cassville, said he would be supportive of a special session that reverses nursing home and in-home health care cuts.
However, state Sen. Ed Emery, R-Lamar, said he would prefer to override the governor’s veto and stick with the senate’s plan of sweeping other funds to find the revenue.
“I probably would vote for override, although there are some senators that are reluctant to override the governor on his first session,” Emery said.
Republican House members will caucus Tuesday to discuss whether to vote for a special session.
The Associated Press contributed to this article.
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