Politics

Missouri disability advocates decry changes to at-home care system

Published

2 years ago

September 3, 2023

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Nearly 40 years ago, Victoria McMullen and her husband traveled from St. Louis to Sikeston to adopt a six-year-old boy with severe developmental disabilities named Ron.Now 44, Ron has cerebral palsy, autism and intellectual disabilities. He’s unable to live independently and for the last 23 years his parents have relied on a state service to help pay for in-home caregivers to provide the intensive assistance he needs.The service, called Self-Directed Supports, lets McMullen hire, train and manage the staff herself, tailoring the help to Ron’s needs. Caretakers, many of them local university students, work with Ron 13 hours a day, helping him go to the bathroom, do physical therapy, bathe and dress, as well as doing social activities with him like cooking.Without that funding, McMullen would be unable to care for him, especially after a back injury left her unable to physically support or help lift him.

Provided, via Missouri IndependentSarah, a personal assistant hired through Self-Directed Supports and a graduate student in occupational therapy, massages Ron McMullen’s feet and helps with his physical therapy in August 2023.

“We could not do it without it negatively impacting our health,” she said.This year, McMullen wrote to state lawmakers urging them to put more money into pay for direct care workers who assist those with developmental disabilities.The staff hired through Self-Directed Supports, as well as through traditional home health agencies, desperately need a pay bump, she said, noting one of Ron’s caregivers works 40 hours a week, needs to buy her own insurance and rarely can afford to take time off.She was pleased in May when the legislature voted to raise the rates for caregivers. But the good news quickly soured.Missouri’s Department of Mental Health announced in July that the program Ron and 3,030 individuals around the state rely on could be excluded from the rate increase.Complicating matters even more, state regulators have proposed a change in how it calculates rates for the Self-Directed Supports program, a situation advocates fear could mean rates are frozen at low levels or become unpredictable.The proposed change in the rate calculation is open for public comment until Monday. It would remove the regulation linking the rate the state pays for direct services to the rate they pay home health agencies.

Provided, via Missouri Independent Ron McMullen celebrates his 36th birthday with a caregiver at a karaoke restaurant the two of them used to go to every Friday.

“It makes it difficult to keep and maintain staff if we can’t offer competitive wages,” McMullen said, adding that the Self-Directed Supports staff need higher wages than staff hired through home health agencies, because the former are not provided benefits.The state has not offered a rationale for proposing the changes to the program’s rates, beyond the procedural. Debra Walker, spokesperson for the Department of Mental Health said that “Currently [Self-Directed Supports] is the only service with rate parameters within [Missouri Code of State Regulations],” and the removal of that language from the regulations will allow the state to “fully align” rate methodologies for all of its Medicaid home and community-based services.Families using Self-Directed Supports say the changes caught them completely by surprise.“If they’re going to make changes like this without our input, what other changes are they going to make?” McMullen asked.Adam Sommer, an attorney and podcaster who lives in Warrensburg and has a daughter, Clara, with a rare genetic condition called Rett syndrome, uses Self-Directed Supports to cover her caretaker. She can’t talk and uses a screen in front of her that allows her to communicate with her eyes.He said the state hasn’t told them how they plan to calculate the new rates.“What do we tell the employees who have these jobs what their future looks like?” he said.“It’s a very complicated system, that they are changing while no one’s really looking in a way that creates more uncertainty and more complication. And that could cause some really big problems for people,” Sommer said.

Provided, via Missouri IndependentClara Sommer entered first grade this year. Her family relies on a caretaking through self-directed services.

‘Why should we be treated differently?’Self-directed services are part of a national trend over the last few decades away from institutionalization and toward community-based support and integration — based on the belief that decisions about an individual’s care are best made by those closest to them.The premise of Self-Directed Supports “is that when individuals have control of their resources their quality of life will improve and the overall cost of services will decrease,” according to the state’s manual on developmental disabilities.In Self-Directed Supports, someone called a designated representative, often a family member, is in charge of overseeing staff, including recruiting, hiring, training and supervising them, and has the flexibility of choosing how to allocate a yearly budget. They are not paid for the administrative work.That representative acts as the employer. It’s a task many families may not have the time or ability to do. But advocates argue that although the program is not right for everyone, it’s a choice that should be preserved.McMullen said she performs an average of one hour a day administrative work, as Ron’s designated representative.Larry Opinsky, a disability advocate and steering committee member of an advocacy group composed of over 700 Missouri families using Self-Directed Supports, has been vocal in his opposition to the state’s proposals.Opinsky’s 24-year-old daughter, Lilly, also has Rett syndrome, and is nonverbal and unable to walk. She “requires full-time assistance with everything she does.”

Provided, via Missouri Independent Larry, Joyce, Sam and Lilly Opinsky

His family has been utilizing Self-Directed Supports for around 12 years, Opinsky said, particularly drawing caregivers from local universities. The freedom for the caregivers to work within their schedules, making arrangements directly with the family and getting to know them closely “gives them a better opportunity to connect with [Lilly] and create a deeper caregiving bond.”Opinsky said home health staffing agencies are often short-staffed, so they’d be unlikely to find staff that way if they tried. And they prefer finding caregivers themselves: often they are community members who may not otherwise be brought into the formal caregiving world, he said, who forge bonds with Lilly.The service allows him and his wife to work.“Without this support,” he said, “without having self-directed services and this team that we were able to bring on, it would be on my wife and I…And we would be struggling to make the bills.”He said the state’s appearance of preference for agency-based care over self-directed services is especially concerning.“Why are they discriminating against us because we choose to self direct?” he asked. “Why should we be treated differently than the providers who are doing the exact same service in the exact same locations?”The Department of Mental Health did not respond to requests for comment.Opinsky said his group is in contact with Missouri Protection & Advocacy, the federally-mandated program providing legal support to protect individuals with disability.A staff attorney at the organization told The Independent by email that the group is “aware of this issue” and is “monitoring and evaluating the situation.”Little discussion of true costs, advocates sayAdvocates say a rate study should be conducted before any funding is changed— so that if a change is needed, the state could determine how best to calculate the Self-Directed Supports rate moving forward, using data.“They tried to pull this off without anybody paying attention…this needs to be done in the open with a full study,” Opinsky said.The Missouri Department of Mental Health did not respond to requests for comment.Advocates also say it’s not necessarily true that home health care agencies need higher rates to cover overhead costs.Families say because they can’t provide employees benefits under self-directed services, but agencies can, they need to pay a higher wage to make up for it.“Our employees need to be compensated at a higher rate, because we’re not able to provide the fringe benefits that providers can,” Opinsky said. “We not only won’t be able to necessarily attract the same quality employees, but we’ll also have difficulty retaining our employees if they de-link this.”There was a rate study last year the state conducted to determine average wages for staff serving home and community-based health services — but the survey did not evaluate self-directed waiver services.Some advocates believe that self-directed services actually save the state money, because family members do the administrative work for free and it prevents some individuals from needing more-expensive institutionalized care.And the state’s manual notes an overall cost of services decrease is part of the premise of the program.The National Association for Home Care & Hospice, which represents home care organizations across the country, said by email that although it doesn’t take positions on how states should establish different reimbursement levels, states should take into account the various responsibilities of providers when calculating rates.“Many states place higher demands on homecare agencies than they do on self-directed providers, most commonly around things such as supervision, scheduling, physical office locations, quality reporting, and similar requirements,” said Damon Terzaghi, director of Medicaid Advocacy at National Association for Home Care & Hospice.“When there are more stringent requirements placed on agency providers, it is appropriate to have differentiated rates that take the variable mandates into account.”

Provided, via Missouri Independent Jake Dennison has been with his caretaker, Hannah, for 11 years.

Cheryl Dennison, of Chesterfield, whose son has has been using Self-Directed Supports for around 11 years, said the staff she has hired have often stayed for years, rather than quickly turning over, and some have come to be like family to them — all of which has prevented her 27-year-old son from going into residential care.Her son, Jake, has a brain malformation, along with a seizure disorder, cerebral palsy, and physical and intellectual disabilities.“If we couldn’t take care of Jake in our home, he would move to some kind of institutional living, which costs significantly more than keeping them in our home,” Dennison said. “So I would think the state and federal agencies see that and that they would want to keep perpetuating that.”“It’s such a brilliant program. They shouldn’t shoot themselves in the foot now to freeze the rates.”This story was originally published by the Missouri Independent, part of the States Newsroom.

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Poll: Support for Missouri abortion rights amendment growing

Published

10 months ago

August 29, 2024

Natural Bridge

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A proposed constitutional amendment legalizing abortion in Missouri received support from more than half of respondents in a new poll from St. Louis University and YouGov.That’s a boost from a poll earlier this year, which could mean what’s known as Amendment 3 is in a solid position to pass in November.SLU/YouGov’s poll of 900 likely Missouri voters from Aug. 8-16 found that 52% of respondents would vote for Amendment 3, which would place constitutional protections for abortion up to fetal viability. Thirty-four percent would vote against the measure, while 14% aren’t sure.By comparison, the SLU/YouGov poll from February found that 44% of voters would back the abortion legalization amendment.St. Louis University political science professor Steven Rogers said 32% of Republicans and 53% of independents would vote for the amendment. That’s in addition to nearly 80% of Democratic respondents who would approve the measure. In the previous poll, 24% of Republicans supported the amendment.Rogers noted that neither Amendment 3 nor a separate ballot item raising the state’s minimum wage is helping Democratic candidates. GOP contenders for U.S. Senate, governor, lieutenant governor, treasurer and secretary of state all hold comfortable leads.“We are seeing this kind of crossover voting, a little bit, where there are voters who are basically saying, ‘I am going to the polls and I’m going to support a Republican candidate, but I’m also going to go to the polls and then I’m also going to try to expand abortion access and then raise the minimum wage,’” Rogers said.Republican gubernatorial nominee Mike Kehoe has a 51%-41% lead over Democrat Crystal Quade. And U.S. Sen. Josh Hawley is leading Democrat Lucas Kunce by 53% to 42%. Some GOP candidates for attorney general, secretary of state and treasurer have even larger leads over their Democratic rivals.

Brian Munoz

St. Louis Public RadioHundreds of demonstrators pack into a parking lot at Planned Parenthood of St. Louis and Southwest Missouri on June 24, 2022, during a demonstration following the Supreme Court’s reversal of a case that guaranteed the constitutional right to an abortion.

One of the biggest challenges for foes of Amendment 3 could be financial.Typically, Missouri ballot initiatives with well-funded and well-organized campaigns have a better chance of passing — especially if the opposition is underfunded and disorganized. Since the end of July, the campaign committee formed to pass Amendment 3 received more than $3 million in donations of $5,000 or more.That money could be used for television advertisements to improve the proposal’s standing further, Rogers said, as well as point out that Missouri’s current abortion ban doesn’t allow the procedure in the case of rape or incest.“Meanwhile, the anti side won’t have those resources to kind of try to make that counter argument as strongly, and they don’t have public opinion as strongly on their side,” Rogers said.There is precedent of a well-funded initiative almost failing due to opposition from socially conservative voters.In 2006, a measure providing constitutional protections for embryonic stem cell research nearly failed — even though a campaign committee aimed at passing it had a commanding financial advantage.Former state Sen. Bob Onder was part of the opposition campaign to that measure. He said earlier this month it is possible to create a similar dynamic in 2024 against Amendment 3, if social conservatives who oppose abortion rights can band together.“This is not about reproductive rights or care for miscarriages or IVF or anything else,” said Onder, the GOP nominee for Missouri’s 3rd Congressional District seat. “Missourians will learn that out-of-state special interests and dark money from out of state is lying to them and they will reject this amendment.”Quade said earlier this month that Missourians of all political ideologies are ready to roll back the state’s abortion ban.“Regardless of political party, we hear from folks who are tired of politicians being in their doctor’s offices,” Quade said. “They want politicians to mind their own business. So this is going to excite folks all across the political spectrum.”

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Democrat Mark Osmack makes his case for Missouri treasurer

Published

10 months ago

August 29, 2024

Natural Bridge

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Mark Osmack has been out of the electoral fray for awhile, but he never completely abandoned his passion for Missouri politics.Osmack, a Valley Park native and U.S. Army veteran, previously ran for Missouri’s 2nd Congressional District seat and for state Senate. Now he’s the Democratic nominee for state treasurer after receiving a phone call from Missouri Democratic Party Chairman Russ Carnahan asking him to run.“There’s a lot of decision making and processing and evaluation that goes into it, which is something I am very passionate and interested in,” Osmack said this week on an episode of Politically Speaking.Osmack is squaring off against state Treasurer Vivek Malek, who was able to easily win a crowded GOP primary against several veteran lawmakers including House Budget Chairman Cody Smith and state Sen. Andrew Koenig.While Malek was able to attract big donations to his political action committee and pour his own money into the campaign, Osmack isn’t worried that he won’t be able to compete in November. Since Malek was appointed to his post, Osmack contends he hasn’t proven that he’s a formidable opponent in a general election.“His actions and his decision making so far in his roughly two year tenure in that office have been questionable,” Osmack said.Among other things, Osmack was critical of Malek for placing unclaimed property notices on video gaming machines which are usually found in gas stations or convenience stores. The legality of the machines has been questioned for some time.As Malek explained on his own episode of Politically Speaking, he wanted to make sure the unclaimed property program was as widely advertised as possible. But he acknowledged it was a mistake to put the decals close to the machines and ultimately decided to remove them.Osmack said: “This doesn’t even pass the common sense sniff test of, ‘Hey, should I put state stickers claiming you might have a billion dollars on a gambling machine that is not registered with the state of Missouri?’ If we’re gonna give kudos for him acknowledging the wrong thing, it never should have been done in the first place.”Osmack’s platform includes supporting programs providing school meals using Missouri agriculture products and making child care more accessible for the working class.He said the fact that Missouri has such a large surplus shows that it’s possible to create programs to make child care within reach for parents.“It is quite audacious for [Republicans] to brag about $8 billion, with a B, dollars in state surplus, while we offer next to no social services to include pre-K, daycare, or child care,” Osmack said.Here’s are some other topics Osmack discussed on the show:How he would handle managing the state’s pension systems and approving low-income housing tax credits. The state treasurer’s office is on boards overseeing both of those programs.Malek’s decision to cut off investments from Chinese companies. Osmack said that Missouri needs to be cautious about abandoning China as a business partner, especially since they’re a major consumer of the state’s agriculture products. “There’s a way to make this work where we are not supporting communist nations to the detriment of the United States or our allies, while also maintaining strong economic ties that benefit Missouri farmers,” he said.What it was like to witness the skirmish at the Missouri State Fair between U.S. Sen. Josh Hawley and Democratic challenger Lucas Kunce.Whether Kunce can get the support of influential groups like the Democratic Senatorial Campaign Committee, which often channels money and staff to states with competitive Senate elections.

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As Illinois receives praise for its cannabis equity efforts, stakeholders work on system’s flaws

Published

10 months ago

August 29, 2024

Natural Bridge

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Medical marijuana patients can now purchase cannabis grown by small businesses as part of their allotment, Illinois’ top cannabis regulator said, but smaller, newly licensed cannabis growers are still seeking greater access to the state’s medical marijuana customers.Illinois legalized medicinal marijuana beginning in 2014, then legalized it for recreational use in 2020. While the 2020 law legalized cannabis use for any adult age 21 or older, it did not expand licensing for medical dispensaries.Patients can purchase marijuana as part of the medical cannabis program at dual-purpose dispensaries, which are licensed to serve both medical and recreational customers. But dual-purpose dispensaries are greatly outnumbered by dispensaries only licensed to sell recreationally, and there are no medical-only dispensaries in the state.As another part of the adult-use legalization law, lawmakers created a “craft grow” license category that was designed to give more opportunities to Illinoisans hoping to legally grow and sell marijuana. The smaller-scale grow operations were part of the 2020 law’s efforts to diversify the cannabis industry in Illinois.Prior to that, all cultivation centers in Illinois were large-scale operations dominated by large multi-state operators. The existing cultivators, mostly in operation since 2014, were allowed to grow recreational cannabis beginning in 2019.Until recently, dual-purpose dispensaries have been unsure as to whether craft-grown products, made by social equity licensees — those who have lived in a disproportionately impacted area or have been historically impacted by the war on drugs — can be sold medicinally as part of a patient’s medical allotment.Erin Johnson, the state’s cannabis regulation oversight officer, told Capitol News Illinois last month that her office has “been telling dispensaries, as they have been asking us” they can now sell craft-grown products to medical patients.“There was just a track and trace issue on our end, but never anything statutorily,” she said.

Dilpreet Raju

Capitol News IllinoisThe graphic shows how cannabis grown in Illinois gets from cultivation centers to customers.

No notice has been posted, but Johnson’s verbal guidance comes almost two years after the first craft grow business went online in Illinois.It allows roughly 150,000 medical patients, who dispensary owners say are the most consistent purchasers of marijuana, to buy products made by social equity businesses without paying recreational taxes. However — even as more dispensaries open — the number available to medical patients has not increased since 2018, something the Cannabis Regulation Oversight Office “desperately” wants to see changed. Johnson said Illinois is a limited license state, meaning “there are caps on everything” to help control the relatively new market.Berwyn Thompkins, who operates two cannabis businesses, said the rules limited options for patients and small businesses.“It’s about access,” Thompkins said. “Why wouldn’t we want all the patients — which the (adult-use) program was initially built around — why wouldn’t we want them to have access? They should have access to any dispensary.”Customers with a medical marijuana card pay a 1% tax on all marijuana products, whereas recreational customers pay retail taxes between roughly 20 and 40% on a given cannabis product, when accounting for local taxes.While Illinois has received praise for its equity-focused cannabis law, including through an independent study that showed more people of color own cannabis licenses than in any other state, some industry operators say they’ve experienced many unnecessary hurdles getting their businesses up and running.The state, in fact, announced last month that it had opened its 100th social equity dispensary.But Steve Olson, purchasing manager at a pair of dispensaries (including one dual-purpose dispensary) near Rockford, said small specialty license holders have been left in the lurch since the first craft grower opened in October 2022.“You would think that this would be something they’re (the government) trying to help out these social equity companies with, but they’re putting handcuffs on them in so many different spots,” he said. “One of them being this medical thing.”Olson said he contacted state agencies, including the Department of Financial and Professional Regulation, months ago about whether craft products can be sold to medical patients at their retail tax rate, but only heard one response: “They all say it was an oversight.”This potentially hurt social equity companies because they sell wholesale to dispensaries and may have been missing out on a consistent customer base through those medical dispensaries.Olson said the state’s attempts to provide licensees with a path to a successful business over the years, such as with corrective lotteries that granted more social equity licenses, have come up short.“It’s like they almost set up the social equity thing to fail so the big guys could come in and swoop up all these licenses,” Olson said. “I hate to feel like that but, if you look at it, it’s pretty black and white.”Olson said craft companies benefit from any type of retail sale.“If we sell it to medical patients or not, it’s a matter of, ‘Are we collecting the proper taxes?’ That’s all it is,” he said.State revenue from cannabis taxes, licensing costs and other fees goes into the Cannabis Regulation Fund, which is used to fund a host of programs, including cannabis offense expungement, the general revenue fund, and the R3 campaign aiming to uplift disinvested communities.For fiscal year 2024, nearly $256 million was paid out from Cannabis Regulation Fund for related initiatives, which includes almost $89 million transferred to the state’s general revenue fund and more than $20 million distributed to local governments, according to the Illinois Department of Revenue.Medical access still limitedThe state’s 55 medical dispensaries that predate the 2020 legalization law, mostly owned by publicly traded multistate operators that had been operating in Illinois since 2014 under the state’s medical marijuana program, were automatically granted a right to licenses to sell recreationally in January 2020. That gave them a dual-purpose license that no new entrants into the market can receive under current law.Since expanding their clientele in 2020, Illinois dispensaries have sold more than $6 billion worth of cannabis products through recreational transactions alone.Nearly two-thirds of dispensaries licensed to sell to medical patients are in the northeast counties of Cook, DuPage, Kane, Lake and Will. Dual-purpose dispensaries only represent about 20 percent of the state’s dispensaries.While the state began offering recreational dispensary licenses since the adult-use legalization law passed, it has not granted a new medical dispensary license since 2018. That has allowed the established players to continue to corner the market on the state’s nearly 150,000 medical marijuana patients.But social equity licensees and advocates say there are more ways to level the playing field, including expanding access to medical sales.Johnson, who became the state’s top cannabis regulator in late 2022, expressed hope for movement during the fall veto session on House Bill 2911, which would expand medical access to all Illinois dispensaries.“We would like every single dispensary in Illinois to be able to serve medical patients,” Johnson said. “It’s something that medical patients have been asking for, for years.”Johnson said the bill would benefit patients and small businesses.“It’s something we desperately want to happen as a state system, because we want to make sure that medical patients are able to easily access what they need,” she said. “We also think it’s good for our social equity dispensaries, as they’re opening, to be able to serve medical patients.”Rep. Bob Morgan, D-Deerfield, who was the first statewide project coordinator for Illinois’ medical cannabis program prior to joining the legislature, wrote in an email to Capitol News Illinois that the state needs to be doing more for its patients.“Illinois is failing the state’s 150,000 medical cannabis patients with debilitating conditions. Too many are still denied the patient protections they deserve, including access to their medicine,” Morgan wrote, adding he would continue to work with stakeholders on further legislation.Capitol News Illinois is a nonprofit, nonpartisan news service covering state government. It is distributed to hundreds of newspapers, radio and TV stations statewide. It is funded primarily by the Illinois Press Foundation and the Robert R. McCormick Foundation, along with major contributions from the Illinois Broadcasters Foundation and Southern Illinois Editorial Association.

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