Texas Tribune
Texas families could lose at-home nursing under stricter Medicaid rule
by By Neelam Bohra, The Texas Tribune – 2024-04-19 05:00:00
SUMMARY: A proposed rule from the Texas Health and Human Services Commission stipulates that an adult must remain home when a nurse is there, impacting families like Komika Sales', whose son Micahi relies on private duty nursing due to his medical complexities. The rule would limit Sales' ability to work as an x-ray technician and could force her to choose between quitting her job, paying for additional care she can't afford, or institutionalizing her son. Over 7,000 Texans could be affected by this potential change, which advocates say unjustly conflates medical care with childcare. The draft has met with public opposition, and it's not clear when or if it will become official. Meanwhile, parents like Sales feel targeted and urge HHSC to reconsider.
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As Komika Sales returns home from work, her son's nurse completes his evening routine — giving him his last medications, connecting him to his ventilation machine. After the nurse leaves, Sales and her son gather on the couch, giggling together as he uses his iPad or plays with blocks.
A stricter rule from Texas' human services agency might make their bedtime ritual impossible. Her 16-year-old son could no longer receive nursing — therefore taking away his ability to live at home.
“It's awful because the whole goal is to keep him at home,” Sales said of her son, Micahi Neal.
A proposed rule change from the state's Health and Human Services Commission would not allow an adult “to be away from the home for any period of time” whenever a nurse is providing services, according to documents obtained by The Texas Tribune.
Medicaid offers Neal more than 150 hours of “private duty nursing” per week, the type of care that the proposal would affect. Private duty nursing allows for more continuous services for medically complex children, and for Sales, it's made it possible for her to work outside the home as an x-ray technician and even work overtime to afford his out-of-pocket medical expenses.
If the rule change became official, Sales would have few options: to pay for an extra caregiver to stay home while she works, which she can't afford, to put her child in an institution like a skilled nursing home, or, to quit her job and stay home with the nurse at all times. Neal, who has a congenital heart defect, is paraplegic and has undergone chemotherapy for cancer needs constant care.
“If I don't work, then there's no roof,” Sales said of being a single mom. “I don't have a backup plan or support system because I am the backup plan and the support system.”
Even parents who work from home fear the change could impact their ability to leave the house for any reason, such as buying groceries, going to doctors appointments or running other errands.
Thousands of families could face these crossroads if the rule change became official. More than 7,000 individuals received private duty nursing in 2022, according to the state, though that may include some adults who receive the services through other specialized health care programs.
When asked what spurred HHSC to propose the rule change, spokesperson Jennifer Ruffcorn said in a statement that they were “clarifying the existing private duty nursing rules and policy.”
According to the agency, this is how they've always interpreted the policy. Because of this, HHSC “is not setting new or different expectations about how this policy is monitored or reported,” Ruffcorn said. But, advocates say, the formalized proposal could create confusion for nursing provider companies and affect families' eligibility for their services.
Nurse monitoring
JaReen Williams' 16-year-old daughter can't use the bathroom on her own. She has a neurogenic bladder, colonic dysmotility and fecal impaction, so a nurse spends hours at their house helping with her catheter and bowel program. Sometimes, the entire process can take four or five hours.
Williams works from home and has her own disability. But under the rule change, she would have to bring her daughter and her daughter's nurse to doctor's appointments with her.
“If Mom has to go somewhere, and I'm in the middle of doing all this, I personally wouldn't be able to leave my patient and then follow Mom around,” Ify Ozoh, the private duty nurse for Williams' daughter, said. “I can't do that. My patient comes first.”
Some advocates have argued the rule change wouldn't just harm patients and their families — it also denigrates nurses by equating the medical care they provide with child care, or suggesting another adult needs to be with the nurse at all times.
“I really don't want anyone hovering over me trying to watch what I'm doing. I know what I'm doing,” Ozoh said. “I went to school for it. It will make me feel like, ‘OK, don't you trust me?'”
Ozoh said she doesn't have time during her shift to do anything non-medical for Williams' daughter, regardless of whether or not Williams is home.
Jessie Sage Cheng, a registered nurse and consultant, has a daughter with multiple disabilities, including cerebral palsy. But she can't care for her own daughter because of her work, and she needs someone else to monitor her daughter's medical needs.
“One of the pillars of nursing is autonomy,” Sage Cheng said. “It is being able to make autonomous decisions that are in the best interest of the patient. If you make somebody else responsible for what the nurse is doing, you've just stripped them of their autonomy.”
Sage Cheng said it isn't fair to call nursing care “child care” just because a parent is away.
“The need for someone to watch your child who has medical complexities is inextricably linked to the level of care that they need,” Sage Cheng said. “And so you can't separate it out. You can't say that a child receiving PDN is just being taken care of like a babysitter would — because a babysitter couldn't take care of that child.”
“It is unequivocally denying the reality of the level of care that that child needs,” Sage Cheng said.
An ongoing debate
The rule draft has befuddled advocates, both because it's not clear why the change is necessary, and because the concept has been introduced before and received public rancor, they said.
“It's not really clear why,” said Terry Anstee, an attorney for disability advocacy organization Disability Rights Texas. “The rationale from the Health and Human Services Commission keeps changing.”
Anstee said HHSC has cited concern from the Texas Legislature, the Centers of Medicare and Medicaid Services, and the Board of Nursing on different occasions as reasons for making the rule change. He said he's found no evidence to back any of these claims.
Ruffcorn, the HHSC spokesperson, said in a statement that the move was “intended to clarify the existing PDN rules and policy that have been in effect for several years.”
Since 2015, HHSC has interpreted the current rules to mean that parents cannot “regularly or routinely leave” a nurse at home alone with a child while at work because that would qualify as respite care, which isn't covered, her statement said.
But neither of the existing policies the commission referred to — both in the Texas Administrative Code and the Texas Medicaid Provider Procedures Manual — specifically say an adult must stay home with a nurse at all times. One part of the manual says that responsible adults are “essential elements of safe and effective” services, but in the context that a child must already reside with an adult who provides them with all other forms of care.
At the same time, the manual says these nursing services “may inherently result in the relief of the parent, guardian, or responsible adult, child care, or some non-medical, non-skilled activities in the course of providing nursing care.”
According to the documents obtained by The Texas Tribune, HHSC drafted a similar proposal in 2021 after meeting with private duty nursing companies and managed care organizations, the health care companies that provide Medicaid health plans to Texans. Managed care organizations foot the immediate bill for care, but the state funds them — and when they report higher costs of care, the state has to increase how much it pays them.
But this draft was leaked to the public, as a result, HHSC received “around 130 emails from stakeholders (including parents and providers),” according to the documents.
“A main concern from the parents was the inability to work outside of the home and paying for necessary child care,” the documents said of these emails.
The commission introduced the current rule change draft this year, but it's unclear if and when the rule will become official. In documents, HHSC said the rule could officially be proposed in the Texas Register “around summer 2024” following periods of public comment and the Medical Care Advisory Committee discussing it at a meeting.
Trying to work
Some parents have already seen the fallout of not being able to access private duty nursing services. Laure Elmer lives in Pleasanton, Texas outside of San Antonio and her son has multiple disabilities and needs the continuous care private duty nursing would provide.
He's eligible for services but because she lives in a more rural area, she hasn't been able to actually find a nurse to perform that care — so she had to quit her job as a full-time pediatrician and now provides medical care for him herself.
“I was practicing and enjoyed what I was doing,” Elmer, 59, said of her 16-year-old son, who has cerebral palsy. “We had entertained [putting him in an institution] as a fleeting thought, but I can't do that to our son. It became a choice that I would much rather stay home with my child. But I had the luxury of a husband who was working.”
For Sales, she said she has to work no matter what.
“I have expenses. I have a mortgage to pay, I have a car note to pay, I have insurance to pay,” Sales said. “We've got to eat, so I've got to work to buy groceries. And on top of it, everything in the grocery store costs higher than what it did five years ago. So if I don't work, how am I supposed to afford anything?”
Sales said she hopes HHSC listens to public comment, but feels HHSC is always “trying to cut the budget from the ones that need the help the most.”
“I feel like they're always picking on the medically fragile kids,” Sales said. “They need to rethink this proposal.”
Neelam Bohra is a 2023-24 New York Times disability reporting fellow, based at The Texas Tribune through a partnership with The New York Times and the National Center on Disability and Journalism, which is based at the Walter Cronkite School of Journalism and Mass Communication at Arizona State University.
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The Texas Tribune is a nonprofit, nonpartisan media organization that informs Texans — and engages with them — about public policy, politics, government and statewide issues.
Texas Tribune
These Texans aren’t taking buyouts despite repeated floods
by By Emily Foxhall, The Texas Tribune – 2024-05-20 05:00:00
SUMMARY: Recent floods in Harris County, Texas, have devastated homes along the San Jacinto River. Tom Madigan, who owns multiple properties, quickly started repairs without knowing the Harris County Flood Control District aims to buy out such flood-prone properties. The region has a longstanding buyout program to remove homes from high-risk flood areas, with about 800 out of 2,400 targeted properties purchased. However, buyouts are voluntary and often insufficient for low-income residents. Despite the program, many choose to stay due to affordability and community ties, while others like Madigan remain skeptical of receiving a fair offer.
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HARRIS COUNTY — After the floodwaters earlier this month just about swallowed two of the six homes that 60-year-old Tom Madigan owns on the San Jacinto River, he didn't think twice about whether to fix them. He hired people to help, and they got to work stripping the walls, pulling up flooring and throwing out water-logged furniture.
What Madigan didn't know: The Harris County Flood Control District wants to buy his properties as part of an effort to get people out of dangerously flood-prone areas.
Back-to-back storms drenched southeast Texas in late April and early May, causing flash flooding and pushing rivers out of their banks and into low-lying neighborhoods. Officials across the region urged people in vulnerable areas to evacuate.
Like Madigan's, some places that were inundated along the San Jacinto in Harris County have flooded repeatedly. And for nearly 30 years, the flood control district has been trying to clear out homes around the river by paying property owners to move, then returning the lots to nature.
The recent floods show why buyout programs can be important. These spots typically flood first and worse. Gov. Greg Abbott reported that hundreds of rescues took place in the state while the floods destroyed homes. A man drowned and a child was swept away into the floods. One Harris County resident described climbing on top of his motor home as the water rose before first responders rescued him.
But the disaster and its aftermath also illustrate why buyouts are complicated to carry out even in Harris County, home to Houston, which has one of the most robust buyout programs in the country. The flood control district has identified roughly 2,400 properties as current buyout candidates around the San Jacinto; the district and county have bought about 800 of them.
Nearly all of the district's buyouts are voluntary. If an owner doesn't want to sell, the district can't force them out.
Buyouts make sense for some people who can't be protected from floods, said Alessandra Jerolleman, director of research for the Center on Environment, Land and Law at Loyola University New Orleans College of Law.
But buyouts might not provide lower-income people enough money to get somewhere safer, she said, and they could lose important support like child care from nearby family or neighbors.
“It's not as though it's a guarantee of reducing risks to that family,” Jerolleman said.
People who live near the river and who have endured repeated floods explained that they've stayed because it's affordable and, most of the time, peaceful. Where else would they be able to buy anything like it? Some said they didn't think the government would offer them what they consider a fair price to sell their land. Some didn't know the buyout program existed.
Madigan started buying homes more than 15 years ago in the unincorporated River Terrace neighborhood because they were cheap. On Tuesday, the Houston firefighter drank a Heineken and grilled hamburgers for his work crew outside his most damaged house, which he rents to his brother. Sodden rugs baked in the sun on the driveway.
Madigan said he might have taken a buyout if it was a reasonable offer — but he doubted it would be. He said he needed to get the properties ready again for his renters. “I can't wait,” he said.
Two blocks away, water had swept through a yellow house Madigan rents to a family with a teenage son. One of the workers fixing the property, 21-year-old Omar Reyna, watched the family throw out pretty much everything they had. Piecing together new laminate flooring with his dad, Reyna kept thinking about a trash bag of Teddy bears and stuffed toys he tossed out for them.
He wondered if the parents had been saving the toys for another kid they might have in the future.
“The faster we get it done, the faster they can come back in here,” Reyna said.
Some people choose to live with the risk of flooding
The San Jacinto is the largest river in the state's most populous county. For years before Harris County's first floodplain maps were drawn up in the mid-1980s, people built homes near its banks. Even today, people can still build in the vast floodplain if the houses are high enough and have enough stormwater detention.
The flood control district tries to buy out homes in pockets of the floodplain that are deepest, said James Wade, manager for the district's property acquisition department. Those are places where engineers can't easily fix flooding problems.
Buyouts are meant to get people out of flood zones before their property floods again, not to help in the immediate aftermath of a disaster. The process is slow: In some cases, it can take 18 months or longer to approve a buyout application, Wade said. The district pays owners the market value or pre-flood value for their house, determined by a third-party appraiser, plus moving expenses and a supplement to help them get into a house out of the floodplain, Wade said.
“It's a very equitable, fair program,” Wade said — but still some people don't want to leave.
Those who stay learn to adapt. They build homes on stilts. They monitor the river level and watch for releases of water from the Lake Conroe dam upstream. Some know intimately the routine of rebuilding: gut the house, clean it, put it back together.
The floor of 49-year-old Sean Vincent's house in the Forest Cove neighborhood in northeast Houston is 15 feet above the ground. Three feet of water flooded it when Hurricane Harvey hit in 2017. This month, the floods reached five feet high on Vincent's property. He cleaned out his waterlogged ground-level shed with help from church members. On Tuesday, he was building new shelves for it.
But most of the time Vincent, who works in railroad traffic control, said he enjoys the space surrounded by tall trees with room for his three kids.
“It's just really not a major part of our life,” Vincent said of the flooding. “Yes, it's inconvenient. Yes, it's now happened to us twice in seven years … It's sort of a trade-off for us. And it is lovely out here.”
“Where are you going to go?”
Then there are those who stay because they don't see anywhere else to go.
Jack St. John, 67, a retired long-haul truck driver, moved to Northshore 43 years ago and has had to clean up after two floods. He worries any time flooding threatens, but the neighborhood's advantages keep him there: He has no water bill because he has a well. His taxes are reasonable. The neighborhood has a fish fry in the spring and a barbecue in the fall.
“You know, when you leave, where are you going to go?” he said. “What's it going to cost to buy into another place?”
Farther northeast, in the Idle Wild and Idle Glen neighborhoods, the floods forced some residents to sleep under tarps. On one largely forested street, boats were turned sideways or flipped upside down. A small building was lodged in the trees. A car was in the ditch.
For several years, Elvia Bethea, 68, has driven from her home in Humble to check on people and pets here, and pick up stray animals. On Tuesday, she and other volunteers gave John Gray, 50, bamboo yard torches to fight the many mosquitoes, plus two trays of chocolate-covered strawberries.
Gray said he couldn't afford to fix up his destroyed house. He earns a living printing labor law posters for businesses. His printers at home were destroyed.
Gray said he had never heard of the buyout program but would consider taking one.
“Who do I call?” Gray asked. “I don't have a clue.”
From the back of a white SUV, Bethea handed some hot dogs to Jose Tabores, 68, who lives on Gray's land in a trailer now filled with mud.
“I'm coming for dinner, remember!” Bethea teased him.
Nearby, 51-year-old Veronika Scheid had been sleeping in a wet tent. The flood washed the shipping crate she lived in down the road and into the trees — along with her and her neighbors' belongings.
At a low point, when Scheid was crying over all she lost, she found a pink-and-white beaded necklace with stitching in the shape of a “V,” like her name. At the end was a charm shaped like a house.
She was grateful the person who owned the land where she stayed hadn't taken a buyout. Otherwise she would have nowhere to go.
“At least we have this,” Scheid said.
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The Texas Tribune is a nonprofit, nonpartisan media organization that informs Texans — and engages with them — about public policy, politics, government and statewide issues.
Texas Tribune
Trump, Abbott speak at Dallas NRA convention
by By Annie Xia, The Texas Tribune – 2024-05-18 19:24:41
SUMMARY:
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DALLAS— At the National Rifle Association's annual convention on Saturday, Donald Trump and Gov. Greg Abbott encouraged the thousands gathered to vote for Trump in the 2024 presidential election as a way to ensure their Second Amendment rights.
“The NRA has stood with me from the very beginning, and with your vote, I will stand strong for your rights and liberties,” Trump said. “I heard it a few weeks ago that if gun owners voted, we would swamp them at levels that nobody's ever seen before. I think you're a rebellious bunch, but let's be rebellious and vote this time.”
Trump and Abbott spoke to a room packed with NRA members, some of which sported supportive attire from the standard-fare red caps to a dress covered with photos of the former president.
During the convention, the NRA released its endorsement for the 45th president, and the Trump political campaign announced the launch for the “Gun Owners for Trump” coalition.
Abbott touted his track record on gun rights by pointing to Texas laws passed last year, such as House Bill 3137 which prohibits local governments from requiring firearm owners to buy liability insurance. To energetic applause, he said the law ensured people would not be forced to pay to exercise their Second Amendment rights.
Abbott also described the state's successful crackdown on the recent pro-Palestinian protests on university campuses, in which protesters are demanding the schools divest from from companies tied to Israel or weapons manufacturing amid the Israel-Hamas War.
“When they tried to pull that stunt in Texas, our Department of Public Safety cleared the area, arrested the protesters and put them in jail,” Abbott said. “Unlike some of these radical leftist universities like Columbia, UCLA and far too many others, in Texas we don't tolerate paid protesters who tried to hijack our college campuses.”
Almost to the day, the NRA convention takes place two years after the Uvalde school shooting, where an 18-year-old gunned down an elementary school with a legally purchased assault rifle. The shooter killed 19 fourth-graders and two teachers with an AR-15 style rifle.
During the 2023 legislative session, Uvalde families unsuccessfully pressed Texas policymakers to pass a raise-the-age law, which would have upped the minimum age for buying semi-automatic weapons from 18 to 21.
“Donald Trump and Texas Republicans made the gun violence epidemic worse, especially in our state, where we have seen nine mass shootings just in the last 15 years,” said a statement by Gilberto Hinojosa, the Texas Democratic Party Chair, on Friday. “Even after Uvalde parents pleaded with Greg Abbott and Ted Cruz for commonsense gun safety laws, they decided, like Trump “ that the NRA and gun lobby was more important.”
Instead the legislature approved a school safety bill that established preventative measures toward school shootings. The law included a mandate that every school must hire an armed security officer and the creation of a department within the Texas Education Agency that can compel districts to adhere to active-shooter protocols.
During his speech, Trump endorsed four Republican candidates who are fighting in late May runoffs to be their party's nominee: Alan Schoolcraft, David Covey, Helen Kerwin and Brett Hagenbuch. Each of them has already received endorsements by Abbott, Attorney General Ken Paxton or both. Schoolcraft, Covey and Kerwin are running against Republican incumbents in the Texas House who impeded Abbott's signature school voucher bill or voted for Paxton's impeachment based on accusations of corruption.
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Texas Tribune
Photos: Texas storms cause widespread damage in Houston area
by By Marie D. De Jesús and Antranik Tavitian, Houston Landing, The Texas Tribune – 2024-05-17 14:45:42
SUMMARY: Severe storms hit the Houston area on Thursday evening, resulting in widespread damage, four fatalities, and power outages affecting nearly 900,000 homes and businesses. The Houston Office of Emergency Management is beginning recovery efforts, while officials discourage unnecessary travel. Reports from Houston Landing detail the extent of the destruction, which includes knocked-down power lines and damaged buildings, such as the Wells Fargo Plaza and the CenterPoint Energy Plaza. Photos provided by Antranik Tavitian and Marie D. De Jesús illustrate the damage seen across the region.
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Severe storms tore through the Houston area Thursday evening, causing widespread damage, killing at least four people and leaving hundreds of thousands of homes and businesses without power.
Gale force winds up to 100 mph knocked over power lines, blew out windows and toppled trees throughout the region. Houston Office of Emergency Management spokesperson Brent Taylor said officials will begin the recovery process once debris and damage are cleared. In the meantime, Houston Mayor John Whitmire and Harris County Judge Lina Hidalgo urged residents to avoid all unnecessary travel.
The storm ravaged Harris County — from transmission towers crushed in suburban Cypress to stricken oak trees blockading traffic to high-rise windows shattered throughout downtown Houston.
Here's a look at some of the damage wrought, reported by Houston Landing:
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