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Kathleen O’Brien’s life revolves round her son Christopher, a 23-year-old with a uncommon genetic dysfunction often known as Angelman syndrome that causes extreme developmental delays.
Unable to speak, feed himself or use the lavatory on his personal, Christopher is totally depending on his mom and requires around-the-clock care. O’Brien has some assist: The state pays for the caregivers she hires to come back into their South Burlington dwelling 13 hours a day. However such staff are onerous to search out and routinely give up with little discover. O’Brien inevitably steps in to fill the void.
The caregiving obligation “consumes my life,” she mentioned.
O’Brien often cannot be paid for taking good care of Christopher, even when the cash in his government-funded care funds goes unspent, as a result of state rules forbid compensation to household caregivers of individuals with developmental disabilities. The pandemic modified that. To maintain households protected throughout the public well being disaster, the state loosened the rule on an emergency foundation. A whole bunch of households transformed unspent care budgets into funds during the last two years, as much as $5,000 per quarter.
For O’Brien, the association validated her caregiving as reliable work and introduced in an additional $15,000. For different households, the funds had been an financial lifeline, serving to offset misplaced wages when a breadwinner stayed dwelling with their liked one.
Initially seen as a stopgap measure, paying relations has emerged as a possible answer to the persistent scarcity {of professional} caregivers in Vermont. However whereas many mother and father, together with O’Brien, help the thought, advocates say the state ought to spend its cash elsewhere: elevating wages to draw extra skilled staff, for example, or creating extra group houses the place folks with developmental disabilities might dwell aside from their households.
Skeptics say codifying household funds would allow the state to proceed shortchanging an already underfunded nook of its well being care system on the expense of its most susceptible, a lot of whom do not need to dwell at dwelling eternally.
“It is actually fixing the issue within the quick time period and establishing a system the place we additional exploit mother and father,” mentioned Kirsten Murphy, government director of the Vermont Developmental Disabilities Council.
The Division of Disabilities, Getting older and Impartial Dwelling is weighing these arguments as it really works to resume a multiyear plan that spells out how incapacity providers are delivered in Vermont. Jennifer Garabedian, director of the division’s Developmental Disabilities Providers Division, mentioned she and her colleagues have a lot to contemplate earlier than they resolve whether or not to hunt federal approval to pay mother and father completely.
“However, actually, we’ve seen the way it might work,” she mentioned.
Practically half of DAIL’s $537 million funds this fiscal 12 months will go towards developmental incapacity providers. Vermont’s Medicaid program, which receives 55 p.c of its funding from the federal authorities, will decide up virtually your complete tab.
Whereas some states already pay household caregivers, Vermont had lengthy resisted the observe, largely on philosophical grounds. Individuals with developmental disabilities ought to dwell as independently as attainable, the considering goes. If households receives a commission to take care of them, they will not be inspired to exit on their very own.
Kids with disabilities typically dwell at dwelling, and persevering with funds to their mother and father has broad help. Nonetheless, service suppliers say autonomy is essential for adults with disabilities, even when some people cannot simply categorical what they need.
“I do know my mother and father had hopes and desires for me and envisioned what was going to be finest for my life,” mentioned Delaina Norton, director of long-term helps and providers at Burlington’s Howard Middle. “Nonetheless, what I selected to do as I entered maturity could have been very totally different than what my mother and father had envisioned. We have now to appreciate that it’s no totally different for folks with developmental disabilities.”
But the space between what is right and what’s lifelike has widened lately, and the pandemic has solely additional broadened the hole. Some native businesses had extra vacant frontline jobs than crammed ones final 12 months, whereas mother and father mentioned it has change into more durable and more durable to search out folks keen to carry out the mentally and bodily taxingwork.
Few options exist for disabled adults who need to dwell exterior of their household dwelling. Past a number of dozen small group houses or staffed residential facilities, the one possibility for many is what’s often known as “shared residing,” by which the state pays somebody an annual wage to dwell with and help an individual with developmental disabilities. About 1,370 adults who obtained developmental providers final 12 months had such preparations, costing the state about $39,000 per particular person on common. About 1,150 disabled adults lived with household.
Some mother and father resent the thought of sending a grown little one to dwell in a stranger’s home and check with shared residing as “grownup foster care.” A bunch of about 80 mother and father is now pushing the state to pursue extra residential applications. However such efforts would take years to implement.
In the meantime, shared-living suppliers are burning out sooner than they are often changed, and native businesses are struggling to search out locations for adults with disabilities to dwell.
Beth Sightler, government director at Champlain Group Providers, mentioned her group at the moment has eight folks residing in “precarious” conditions both as a result of their mother and father are getting older or their shared-living suppliers are on the verge of quitting. The company is housing a kind of folks in a resort whereas paying for 24-hour staffing.
“The residential disaster means all of us are on the lookout for any possibility that’s going to stabilize a house,” Sightler mentioned.
Individuals with developmental disabilities typically have difficult medical wants, and plenty of households had been hesitant to convey outsiders into their houses throughout the early days of the pandemic. Some mother and father had to decide on between presumably exposing a baby to COVID-19 or reducing again on work to offer the care themselves.
Below the emergency rule, households might convert unspent authorities funds into direct funds every quarter of as much as $5,000, or one-fourth of their annual care funds, whichever was much less. This system was non-obligatory, and plenty of households selected as a substitute to proceed receiving their full slate of providers. Others paid themselves for the misplaced help hours.
The state doesn’t know what number of households obtained funds, nor how a lot cash was spent. The funds flowed via native businesses that had been advised to trace solely the whole variety of funds made, and the greenback figures they reported included checks despatched to shared-living suppliers, too. Nonetheless, it is estimated that not less than a pair hundred households took benefit of the funds.
O’Brien, the South Burlington mom, prefers utilizing caregivers however mentioned she desires the flexibleness to be paid herself when wanted. “You’re so depending on … caregivers exhibiting up,” she mentioned. Two give up inside the previous few weeks, together with one who notified O’Brien in a textual content message, then blocked her quantity.
She has a considerably simpler time discovering replacements than her buddies in rural components of the state, however even then, her subsequent hires will seemingly final solely a 12 months, if that. The fixed turnover places her on edge, and she or he worries much more concerning the impression on Christopher. Whereas she’s not sure whether or not he notices the fixed change, she suspects he does.
“Paying mother and father must be an possibility,” she mentioned. “It is the one factor that is smart.”
The choice would save Vermont cash. It prices about $105,000 a 12 months to help one particular person in a bunch dwelling and almost $140,000 in a staffed residential setting — excess of the $20,000 most that oldsters might make underneath the direct fee program.
The potential for financial savings is precisely what considerations advocates.
Murphy, the director of the disabilities council, mentioned Vermont already depends on mother and father for lots of low cost labor. If mother and father acquired the identical awful pay that skilled caregivers earn, the state would by no means truly bear the true value of supporting its disabled group, she mentioned: “It will simply exacerbate the already troublesome drawback that we do not ship the providers we promise folks.”
A greater concept, she mentioned, is to fund struggling native businesses sufficient that they’ll increase salaries and rent extra staff. A working example is Champlain Group Providers, considered one of 15 businesses the state contracts with to offer developmental incapacity providers. Sixty p.c of frontline jobs had been vacant on the Colchester group final fall.
Sightler, the director, mentioned many longtime workers members give up as a result of they might not afford to dwell on the company’s $15-an-hour beginning wage. “I actually did not know that we might preserve folks protected anymore,” she mentioned.
The scenario was so dire that the company’s board voted to boost the beginning wage to $18 an hour. The transfer got here at nice monetary threat to the company, because it has no assure that the state will increase its funding in response. Nevertheless it proved to be “life saving,” Sightler mentioned.
“Instantly, folks stopped leaving. Many résumés began coming in. Employees who left got here again,” Sightler mentioned. 5 months later, the company’s emptiness price had been minimize in half.
Drastically elevating wages for frontline workers would require a big state funding, since greater than half of the cash comes from fastened federal funds. “And it would not change the truth that some folks need this selection,” Garabedian mentioned of father or mother funds.
The state would not declare mission completed if the coverage had been adopted, the DAIL official added. The funds would merely be one other various, which is “what our system has been predicated on: giving folks selections and choices.”
“I want to assume that it would not get us off the hook for something,” Garabedian mentioned.
The state has a lot to determine if it decides to make the observe everlasting. How a lot would mother and father be paid, and the place would the cash come from? Who would they work for: the state or native businesses? How would the state monitor households to ensure they’re offering the correct quantity of help?
“If it is not the proper resolution, then I feel we simply have to make sure that we have been actually thorough and deliberate in attending to that time,” Garabedian mentioned. “And if it’s the proper resolution to maneuver ahead, that we accomplish that in an equally thorough and deliberate approach.”
Last month, the University of Vermont Health Network announced a slate of wide-ranging cuts to its Vermont facilities.
Those cuts — which drew a swift and furious outcry — included closing an inpatient psychiatric unit at Central Vermont Medical Center, ending kidney transplants at the University of Vermont Medical Center, and shuttering a primary care clinic in Waitsfield.
Across Lake Champlain, however, the situation looks very different. Over the past few years, UVM Health Network’s facilities in northern New York have added capacity and increased the volume of certain procedures.
Over the past two years, Champlain Valley Physicians Hospital, in Plattsburgh, has worked to increase the number of surgeries it performs, according to Annie Mackin, a network spokesperson. During that time, Elizabethtown Community Hospital’s Ticonderoga campus has expanded clinics in women’s health and dermatology. Late in 2023, a primary care clinic operated by another health care organization opened at Alice Hyde Medical Center, in Malone. And earlier this year, Alice Hyde hired a general surgeon, the network announced in October.
The network hopes to add even more capacity in the state in the coming years, leaders say.
“In New York, we’re doing our very best to expand services, to grow opportunities, to be able to have more opportunities to see patients over there,” Steven Leffler, president and chief operating officer of UVM Medical Center, said in an interview last month.
“We’re hoping they’ll have more inpatient access to cover patients who can’t stay here,” Leffler said, referring to the Burlington hospital. “We’re hoping we can move more surgical cases there as a way to make sure that access is maintained for people who may have, unfortunately, more (of a) challenge getting access here.”
Leaders of the six-hospital network said the additions in New York are simply part of ongoing efforts to help patients access more care more easily — similar to what the network seeks to do in Vermont.
The University of Vermont Medical Center, Central Vermont Medical Center and Porter Medical Center, in Middlebury, are all part of the UVM Health Network.
The recent cuts on this side of the lake, administrators say, were due solely to the actions of the Green Mountain Care Board, a state regulator that capped network hospital budgets and ordered UVM Medical Center to reduce its charges to private health insurers earlier this year.
Additions at New York hospitals, which are not under the board’s jurisdiction, have nothing to do with the board’s orders and often predate them, network leaders said.
That work “is totally independent and unrelated to regulatory action here,” Sunny Eappen, the president and CEO of UVM Health Network, said in an interview.
Expanding services in New York, however, does benefit Vermont’s hospitals. In the 2023 fiscal year, New York residents contributed roughly 14% of the University of Vermont Medical Center’s patient revenue, to the tune of $245 million, according to financial documents submitted to the Green Mountain Care Board.
In Vermont, the care board places limits on how much hospitals can bring in from patient care — limits that UVM Health Network officials have said are onerous and harmful. By adding capacity in New York, the network can keep some of those patients in their communities and out of Vermont hospitals.
Owen Foster, the chair of the Green Mountain Care Board, declined to comment, saying he did not know the details of the network’s New York hospital services.
In 2025, Champlain Valley Physicians Hospital plans to add operating room capacity for general surgery, urology, ear nose and throat procedures and orthopedics, according to Mackin, the network spokesperson. The network has invested in some “anesthesiology resources” for that expansion and is recruiting urology and orthopedics clinicians, she said.
The network has also informed about 370 New York patients that they have the option of getting imaging procedures — such as x-rays — in-state, rather than in Vermont, Mackin said. UVM Health Network is also “evaluating opportunities” to add gastroenterology, cardiology and infusion procedures in New York, she said.
“It’s patient-focused and patient-centered, right?” Lisa Mark, the chief medical officer of Champlain Valley Physicians Hospital and Alice Hyde Medical Center, said in an interview. “So they don’t have to travel across the lake if they don’t need to.”
Over the past few months, UVM Health Network has drawn scrutiny for the movement of money between its Vermont and New York hospitals.
That attention was sparked by the revelation, during the Green Mountain Care Board’s annual hospital budget review process, that Burlington’s UVM Medical Center was owed $60 million by Champlain Valley Physicians Hospital in Plattsburgh.
That has led to fears that Vermonters are subsidizing New York medical facilities. In comments submitted to the Green Mountain Care Board in August, Vermont’s chief health care advocate Mike Fisher and his staff members charged that the network “has consistently weakened its financial position by choosing to transfer monies to the New York hospitals.”
Network leaders have repeatedly denied that those transfers — which have paid for pharmaceuticals, physicians’ salaries and other expenses — had any impact on Vermonters. Those transfers affect a hospital’s cash on hand, leaders said, but do not affect margins or Vermonters’ commercial insurance rates.
“We’ve been very, very clear on that,” Rick Vincent, the network’s executive vice president and chief financial officer, said in an interview. “The Vermont commercial rates are not impacted by those New York hospitals.”
Last month, the care board asked the network for more information about the New York hospitals’ finances, including their operating margins and cash on hand.
UVM Health Network initially declined to provide that information. But Eappen said in an interview he does intend to share the hospitals’ financial information with the board.
According to publicly available nonprofit tax forms, some of the network’s New York hospitals have struggled in the past years. Champlain Valley Physicians Hospital lost nearly $30 million in its 2022 fiscal year and nearly $40 million in the 2023 fiscal year, according to tax records, and Alice Hyde Medical Center lost about $20 million in those two years, as well. Elizabethtown Community Hospital, meanwhile, has reported positive margins for the past decade.
Eappen said that Champlain Valley and Alice Hyde have grown more stable in the past year, although financial data is not yet publicly available.
There are “not yet” plans to shift more services to New York as a result of the Green Mountain Care Board’s orders, Eappen said. But keeping care close to home for residents of northern New York is a win-win, he said.
“If New Yorkers stay in New York, it doesn’t contribute to that Vermont revenue piece,” Eappen said, referring to patient revenue, which is capped by the Green Mountain Care Board. “And so if we do it well and keep New Yorkers in New York, it’s a positive on both ends.”
“They were not just happy to be there,” said Dalen Cuff, who called Vermont’s 2-1 overtime victory over Marshall on ESPN2 last Monday night. “They felt like a team on a mission and they were. Their mind-set was, ‘We will be forgotten if we don’t win the whole thing.’ I think they were just very salient in the fact that if we win the whole thing, then we hit legendary status. And they were right.”
So when the Catamounts achieved what might have been a stunning outcome to just about everyone outside of their own locker room, prevailing on Max Kissel’s golden goal in the 95th minute, Cuff’s exceptional call included acknowledging the Catamounts’ own we’ve-got-this, no-glass-slipper-necessary mentality.
“Oh my gosh! They do it!” exclaimed Cuff as Kissel’s goal rolled toward the net. “Don’t call them Cinderella! You can call them national champs!”
Vermont’s victory and how it occurred made the Catamounts an instant social media sensation, and the buzz carried through much of the week. On Tuesday, the match drove conversation on such shows as ESPN’s “Around The Horn,” where host Tony Reali declared it the best sporting event of the year.
I told Cuff – whom locals may remember from his time at Comcast SportsNet New England nearly a decade ago — that watching the end of the championship match reminded me of what it felt like when Doug Flutie’s Hail Mary found Gerard Phelan to lift Boston College over Miami in November 1984.
“It’s funny you mention the Flutie thing,” said Cuff, who has called four NCAA men’s soccer finals for ESPN. “When I grew up, I had the VHS tape, ‘Great Sports Moments of the ‘80s.’ One of them was the Flutie play, with the radio call: ‘He did it! He did it! Flutie did it’!
“I never thought I’d be the voice of any type of unforgettable moment, especially since I started my career as an analyst.
“I’ve heard people like Al Michaels or Mike Tirico or Joe Buck talk about when you’re calling something that has a chance to be an incredible moment, or when you’re calling a championship, ‘Do you think about it in advance? Do you rehearse?’ The weird thing is, I don’t think you can in soccer, where one moment that can define the game can happen at any time.”
Cuff said he just instinctively went with what was already on his mind.
“And what was on my mind was that they found it practically offensive to be called Cinderella,” he said. “Their point of view was, ‘We’ve won more games than anybody in this tournament the last few years. We know we’re a small school from America East, but we’re not Cinderella.’
“So we mentioned that during the broadcast a couple of times, and so in the moment I communicated that they’ll never be considered Cinderella again. Just call them champs.”
Cuff acknowledged that he didn’t quite grasp how much the championship match and Vermont’s team was resonating with sports fans until the next day.
“I walked out of there in kind of a stupor,” he said. “Not that they won, but more like, ‘I can’t believe that happened.’ The way it went down. I was kind of dumbfounded for a couple of hours, and I don’t think I understood the response and how many people watched and appreciated what they’d seen. I realized Tuesday with all of the talk about the game and people texting me how much people gravitated toward this.”
The championship aired on ESPN2 in the spot in which the “ManningCast” would normally be on as the alternate broadcast of “Monday Night Football.” But there was no show last Monday.
“Shout out to the Manning brothers for taking the week off,” said Cuff with a laugh. “Thank you for that. I’m sure some people tuned in thinking the ‘ManningCast’ was on, stuck around, and got this unbelievable game.
“I do think where it’s on television matters. It was on ESPN2 for the first time since I’ve been calling it. I think random people stumbled across the game. I recognized that part instantly. When you walk into a bar, ESPN is likely on TV. ESPNU is not likely to be on. So the platform made a difference.”
…
Jim Donaldson, an important member of an outstanding Providence Journal sports section for nearly four decades, died Thursday morning at age 73. Donaldson never smoothed the edges of his opinions as a writer, particularly when it came to the Patriots, and was a friendly companion in the press box. I enjoyed his wry sense of humor as a frequent weekend host on WEEI back in the late ‘90s and early 2000s. Even after his retirement in 2016, he remained an engaging — and opinionated, of course — presence on social media. I’ll miss hearing from him . . . Expect the Red Sox to announce their broadcast booths for both NESN and WEEI at Fenway Fest — an even kinder, gentler version of Winter Weekend, apparently on Saturday, Jan. 11. Dave O’Brien (NESN) and Will Flemming (WEEI) will remain in their play-by-play roles, but some other specifics are still being worked out.
Chad Finn can be reached at chad.finn@globe.com. Follow him @GlobeChadFinn.
Media
The University of Vermont men’s soccer team — excuse me, make that the national champion University of Vermont men’s soccer team — was undeniably an underdog along its now-storied journey.
The Catamounts were ranked No. 17 and unseeded entering the NCAA Tournament. Even as an exceptional America East program, they don’t have the resources to match the big programs from the Big Ten and Atlantic Coast Conference.
Underdog? Accurate assessment. Just don’t tell the Catamounts themselves that they were a Cinderella story, as if their success required some sort of fairy-tale caliber intervention. For one thing, Cinderella doesn’t wear flannel, as the Vermont players were prone to do when they took the field for warm-ups. For another, they were certain they could beat anyone, even while the final chapters of its extraordinary and ultimately fulfilled quest were still being written.
“They were not just happy to be there,” said Dalen Cuff, who called Vermont’s 2-1 overtime victory over Marshall on ESPN2 last Monday night. “They felt like a team on a mission and they were. Their mind-set was, ‘We will be forgotten if we don’t win the whole thing.’ I think they were just very salient in the fact that if we win the whole thing, then we hit legendary status. And they were right.”
So when the Catamounts achieved what might have been a stunning outcome to just about everyone outside of their own locker room, prevailing on Max Kissel’s golden goal in the 95th minute, Cuff’s exceptional call included acknowledging the Catamounts’ own we’ve-got-this, no-glass-slipper-necessary mentality.
“Oh my gosh! They do it!” exclaimed Cuff as Kissel’s goal rolled toward the net. “Don’t call them Cinderella! You can call them national champs!”
Vermont’s victory and how it occurred made the Catamounts an instant social media sensation, and the buzz carried through much of the week. On Tuesday, the match drove conversation on such shows as ESPN’s “Around The Horn,” where host Tony Reali declared it the best sporting event of the year.
I told Cuff – whom locals may remember from his time at Comcast SportsNet New England nearly a decade ago — that watching the end of the championship match reminded me of what it felt like when Doug Flutie’s Hail Mary found Gerard Phelan to lift Boston College over Miami in November 1984.
“It’s funny you mention the Flutie thing,” said Cuff, who has called four NCAA men’s soccer finals for ESPN. “When I grew up, I had the VHS tape, ‘Great Sports Moments of the ‘80s.’ One of them was the Flutie play, with the radio call: ‘He did it! He did it! Flutie did it’!
“I never thought I’d be the voice of any type of unforgettable moment, especially since I started my career as an analyst.
“I’ve heard people like Al Michaels or Mike Tirico or Joe Buck talk about when you’re calling something that has a chance to be an incredible moment, or when you’re calling a championship, ‘Do you think about it in advance? Do you rehearse?’ The weird thing is, I don’t think you can in soccer, where one moment that can define the game can happen at any time.”
Cuff said he just instinctively went with what was already on his mind.
“And what was on my mind was that they found it practically offensive to be called Cinderella,” he said. “Their point of view was, ‘We’ve won more games than anybody in this tournament the last few years. We know we’re a small school from America East, but we’re not Cinderella.’
“So we mentioned that during the broadcast a couple of times, and so in the moment I communicated that they’ll never be considered Cinderella again. Just call them champs.”
Cuff acknowledged that he didn’t quite grasp how much the championship match and Vermont’s team was resonating with sports fans until the next day.
“I walked out of there in kind of a stupor,” he said. “Not that they won, but more like, ‘I can’t believe that happened.’ The way it went down. I was kind of dumbfounded for a couple of hours, and I don’t think I understood the response and how many people watched and appreciated what they’d seen. I realized Tuesday with all of the talk about the game and people texting me how much people gravitated toward this.”
The championship aired on ESPN2 in the spot in which the “ManningCast” would normally be on as the alternate broadcast of “Monday Night Football.” But there was no show last Monday.
“Shout out to the Manning brothers for taking the week off,” said Cuff with a laugh. “Thank you for that. I’m sure some people tuned in thinking the ‘ManningCast’ was on, stuck around, and got this unbelievable game.
“I do think where it’s on television matters. It was on ESPN2 for the first time since I’ve been calling it. I think random people stumbled across the game. I recognized that part instantly. When you walk into a bar, ESPN is likely on TV. ESPNU is not likely to be on. So the platform made a difference.”
…
Jim Donaldson, an important member of an outstanding Providence Journal sports section for nearly four decades, died Thursday morning at age 73. Donaldson never smoothed the edges of his opinions as a writer, particularly when it came to the Patriots, and was a friendly companion in the press box. I enjoyed his wry sense of humor as a frequent weekend host on WEEI back in the late ‘90s and early 2000s. Even after his retirement in 2016, he remained an engaging — and opinionated, of course — presence on social media. I’ll miss hearing from him . . . Expect the Red Sox to announce their broadcast booths for both NESN and WEEI at Fenway Fest — an even kinder, gentler version of Winter Weekend, apparently on Saturday, Jan. 11. Dave O’Brien (NESN) and Will Flemming (WEEI) will remain in their play-by-play roles, but some other specifics are still being worked out.
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