
What the ...??? Accessibility barriers still exist for veterans, people with disabilities

Tips for parents for kids with Autism heading back to school this month

Illinois News Connection
It's also important to pay attention to the physical needs of an autistic child to avoid overwhelming them.


Remote work was an underestimated benefit and blessing for family caregivers
Kaiser Health News
Even when Beltré switched to a hybrid work role — meaning some days in the office, others at home — caring for her father was manageable, though never easy.
For Aida Beltré, working remotely during the pandemic came as a relief.
She was taking care of her father, now 86, who has been in and out of hospitals and rehabs after a worsening series of strokes in recent years.
Working from home for a rental property company, she could handle it. In fact, like most family caregivers during the early days of covid-19, she had to handle it. Community programs for the elderly had shut down.
Even when Beltré switched to a hybrid work role — meaning some days in the office, others at home — caring for her father was manageable, though never easy.
Then she was ordered back to the office full time in 2022. By then, Medicaid was covering 17 hours of home care a week, up from five. But that was not close to enough. Beltré, now 61, was always rushing, always worrying. There was no way she could leave her father alone so long.
She quit. “I needed to see my dad,” she said.

In theory, the national debate about remote or hybrid work is one great big teachable moment about the demands on the 53 million Americans taking care of an elderly or disabled relative.
But the “return to office” debate has centered on commuting, convenience, and child care. That fourth C, caregiving, is seldom mentioned.
That’s a missed opportunity, caregivers and their advocates say.
Employers and co-workers understand the need to take time off to care for a baby. But there’s a lot less understanding about time to care for anyone else. “We need to destigmatize it and create a culture where it’s normalized, like birth or adoption,” said Karen Kavanaugh, chief of strategic initiatives at the Rosalynn Carter Institute for Caregivers. For all the talk of cradle to grave, she said, “mostly, it’s cradle.”
After her stepmother died, Beltré moved her father into her home in Fort Myers, Florida, in 2016. His needs have multiplied, and she’s been juggling, juggling, juggling. She’s exhausted and, now, unemployed.
She’s also not alone. About one-fifth of U.S. workers are family caregivers, and nearly a third have quit a job because of their caregiving responsibilities, according to a report from the Rosalynn Carter Institute. Others cut back their hours. The Rand Corp. has estimated that caregivers lose half a trillion dollars in family income each year — an amount that’s almost certainly gone up since the report was released nearly a decade ago.
Beltré briefly had a remote job but left it. The position required sales pitches to people struggling with elder care, which she found uncomfortable. She rarely gets out — only to the grocery store and church, and even then she’s constantly checking on her dad.
“This is the story of my life,” she said.
Workplace flexibility, however desirable, is no substitute for a national long-term care policy, a viable long-term care insurance market, or paid family leave, none of which are on Washington’s radar.
President Joe Biden gave family caregivers a shoutout in his State of the Union address in February and followed up in April with an executive order aimed at supporting caregivers and incorporating their needs in planning federal programs, including Medicare and Medicaid. Last year, his Department of Health and Human Services released a National Strategy to Support Family Caregivers outlining how federal agencies can help and offering road maps for the private sector.
Although Biden checked off priorities and potential innovations, he didn’t offer any money. That would have to come from Congress. And Congress right now is locked in a battle over cutting spending, not increasing it.
They cashed in his retirement fund to hire part-time caregivers.
So that leaves it up to families.
Remote work can’t fill all the caregiving gaps, particularly when the patient has advanced disease or dementia and needs intense round-the-clock care from a relative who is also trying to do a full-time job from the kitchen table.
But there are countless scenarios in which the option to work remotely is an enormous help.
When a disease flares up. When someone is recuperating from an injury, an operation, or a rough round of chemo. When a paid caregiver is off, or sick, or AWOL. When another family caregiver, the person who usually does the heavy lift literally or metaphorically, needs respite.
“Being able to respond to time-sensitive needs for my dad at the end of his life, and to be present with my stepmother, who was the 24/7 caregiver, was an incredible blessing,” said Gretchen Alkema, a well-known expert in aging policy who now runs a consulting firm and was able to work from her dad’s home as needed.
That flexibility is what Rose Garcia has come to appreciate, as a small-business owner and a caregiver for her husband.
Garcia’s husband and business partner, Alex Sajkovic, has Lou Gehrig’s disease. Because of his escalating needs and the damage the pandemic wrought on their San Francisco stone and porcelain design company, she downsized and redesigned the business. They cashed in his retirement fund to hire part-time caregivers. She goes to work in person sometimes, particularly to meet architects and clients, which she enjoys. The rest of the time she works from home.
As it happened, two of her employees also had caregiving obligations. Her experience, she said, made her open to doing things differently.
For one employee, a hybrid work schedule didn’t work out. She had many demands on her, plus her own serious illness, and couldn’t make her schedule mesh with Garcia’s. For the other staff member, who has a young child and an older mother, hybrid work let her keep the job.
If caregivers quit or go part time, they lose pay, benefits, Social Security, and retirement savings.
A third worker comes in full time, Garcia said. Since he’s often alone, his dogs come too.
In Lincoln, Nebraska, Sarah Rasby was running the yoga studio she co-owned, teaching classes, and taking care of her young children. Then, at 35, her twin sister, Erin Lewis, had a sudden cardiac event that triggered an irreversible and ultimately fatal brain injury. For three heartbreaking years, her sister’s needs were intense, even when she was in a rehab center or nursing home. Rasby, their mother, and other family members spent hour after hour at her side.
Rasby, who also took on all the legal and paperwork tasks for her twin, sold the studio.
“I’m still playing catch-up from all those years of not having income,” said Rasby, now working on a graduate degree in family caregiving.
Economic stress is not unusual. Caregivers are disproportionately women. If caregivers quit or go part time, they lose pay, benefits, Social Security, and retirement savings.
“It’s really important to keep someone attached to the labor market,” the Rosalynn Carter Institute’s Kavanaugh said. Caregivers “prefer to keep working. Their financial security is diminished when they don’t — and they may lose health insurance and other benefits.”
But given the high cost of home care, the sparse insurance coverage for it, and the persistent workforce shortages in home health and adult day programs, caregivers often feel they have no choice but to leave their jobs.
Temote and hybrid work is mostly for people whose jobs are largely computer-based. A restaurant server can’t refill a coffee cup via Zoom.
At the same time, though, more employers, facing a competitive labor market, are realizing that flexibility regarding remote or hybrid work helps attract and retain workers. Big consultant companies like BCG offer advice on “the working caregiver.”
Successful remote work during the pandemic has undercut bosses’ abilities to claim, “You can’t do your job like that,” observed Rita Choula, director of caregiving for the AARP Public Policy Institute. It’s been more common in recent years for employers to offer policies that help workers with child care. Choula wants to see them expanded “so that they represent a broad range of caregiving that occurs across life.”
Yet, even with covid’s reframing of in-person work, telecommuting is still not the norm. A March report from the Bureau of Labor Statistics found only 1 in 4 private businesses had some or all of their workforce remote last summer — a dropoff from 40% in 2021, the second pandemic summer. Only about 1 in 10 workplaces are fully remote.
And remote and hybrid work is mostly for people whose jobs are largely computer-based. A restaurant server can’t refill a coffee cup via Zoom. An assembly line worker can’t weld a car part from her father-in-law’s bedside.
But even in the service and manufacturing sectors, willing employers can explore creative solutions, like modified shift schedules or job shares, said Kavanaugh, who is running pilot programs with businesses in Michigan. Cross-training so workers can fill in for one another when one has to step into caregiving is another strategy.
New approaches can’t come soon enough for Aida Beltré, who finds joy in caregiving along with the burden. She’s looking for work, hybrid this time. “I am a people person,” she said. “I need to get out.”
She also needs to be in. “Every night, he says, ‘Thank you for all you do,’” she said of her father. “I tell him, ‘I do this because I love you.’”
Guest Commentary: Poverty never comes with privilege
I hear a lot about white privilege.
I grew up in Martin county, Kentucky. We were considered one of the poorest counties in the United States. In April, 1964 President Lyndon B. Johnson and his entourage of staff, secret service, media and other politicians swarmed into the county seat of Inez during his war on poverty campaign tour.
Johnson and the entourage rode through our town waving and then proceeded on down route 3, which was less than three miles north of my homeplace. He walked onto the porch of a local family where he did a photo session that would be shown on every media source around the world. I just watched it on YouTube.
He then returned to his Cadillac, came back through Inez and shook a few hands at the courthouse before he boarded his helicopter and left us. He had what he needed which were real pictures of real poverty and a story of real poverty from the hills of East, Kentucky.
There was nothing about Johnson's visit that communicated anything about the white privilege of East, Kentucky. We had never heard of white privilege. We hadn't thought much about privilege or poverty either. I don't think too many of us thought we were poor. We didn't know the difference really. We didn't have anybody telling us that we should be demanding equity with others in the country.
After Johnson flew out, we resumed our normal lifestyles. The family pictured in the photo op continued to have a very difficult life of poverty. Even though they had the President of the United States on their front porch it wasn't enough to save them from lives of poverty and difficult times. President Johnson's intentions were good. He led Congress to pass the Economic Opportunity Act in August, 1964 which was part of his war on poverty effort.
It was a nice gesture.
Unfortunately, families throughout Martin county and East, Kentucky still grappled with poverty after the government money and new programs were approved.
Going to the bathroom meant going outside to a tiny little building built over a hole in the ground. In the winter, trudging snow to go to the bathroom at any hour of the day was cruel.
This also meant many families did not have indoor bathrooms. Going to the bathroom meant going outside to a tiny little building built over a hole in the ground. In the winter, trudging snow to go to the bathroom at any hour of the day was cruel.
This also meant taking a bath by collecting water from the well and carrying it into the house which involved a lot of carrying if you were going to take a bath. The same process occurred when washing clothes. Enough water had to be collected to wash and then rinse the clothes. This was a massive job. Does this sound like white privilege?
By the time I was born, my family had indoor plumbing and we had one bathroom. We still had an outdoor toilet that sat out from the house in the back yard. I tore it down a couple of years back. Actually, it was hard to tear it down because I knew it symbolized a very different era of life which too many of us Appalachian people are all too familiar.
We had terrible water as a kid. It was really bad to drink and terrible for washing clothes. The sulfur in the water would ruin our clothes. This meant my mother was always catching rain water in large tubs outside the house. In dry weather when I was a child we would walk to the creek and carry water back to the house one bucket at a time. That always embarrassed me as a kid. I don't know why. Most of the people up and down the creek where I lived had to do the same thing plus many of these people did not have indoor plumbing either. Does this sound like white privilege?
When school was in session at my elementary called Tomahawk, I sat with classmates every day who came to school hungry. The free school lunch program was the only decent meal they ever got to eat. Several boys in our school who did not have indoor plumbing came to school dirty but would often stand in the school bathroom washing their hands and faces before class. I'm sure some girls did the same thing Our little elementary school bathroom was a luxury to them. Does this sound like white privilege?
I hear all this talk about white privilege. Growing up in an inner-city dwelling is surely filled with hardships but these dwellers at least have access to a real kitchen, running water, an indoor bathroom and even television and radio reception. These are luxuries that many Appalachian kids did not have growing up.
Even today, in too many places in East, Kentucky and throughout Appalachia there are still families growing up without indoor bathrooms, access to water and surviving daily hunger. Internet cannot be found in too many Appalachian areas. These are the scenarios that have become ignored by media, government and employers. Thank God it's not even close to what it once was but I've been in the hollers of the mountains and seen enough to know poverty is still real and a cruel existence.
Today, 14 of the 50 poorest counties in the United States are all from the same East Kentucky region that Johnson visited in 1964.
For Martin county, "The per capita income is just over $18,000," according to the 2019 Census reporter. Twenty-six (26.3) percent of the county is still at the poverty level according to Data USA with a median household income of $35,125. The county is 99 percent white. Does this sound like a place of white privilege?
McCreary county is located in the Daniel Boone National Forest in southern Kentucky along the Tennessee state border. The only county nationwide where most households earn less than $20,000 a year, McCreary is the poorest county in both Kentucky and the United States. The life expectancy is just 73 according to USA Today. Does this sound like white privilege?
The Washington Post reported that the life expectancy for the 5thdistrict in Eastern, Kentucky is under 73 making it the shortest life span expectancy in the United States. Owsley County Kentucky's life span expectancy has been reported to be 67.3 years while in San Jose, California the life expectancy is 83.
The white privilege I enjoyed as a kid was that I was fortunate to be raised around hard-working people.
My dad spent four hours a day driving to and from Holden, West Virginia to work in an underground coal mine. He spent over 30 years stooped over, on his knees or on his back in a dark coal mine. He made a living until at the age of 55 his health started failing him and he had to quit.
He and my mother kept food on the table. We raised a garden. We had livestock. My family worked hard. My uncles and aunts farmed and worked whatever jobs they could find to make ends meet. My grandfather and grandmother Hinkle worked in a very small grocery store six days a week until he was 83 and she was 80. They worked hard until they died.
No one had unemployment checks rolling in. No one had Social Security Disability checks. No one was receiving stimulus checks. There weren't food stamps or other federal or state money available to help anyone out. Our family had a mindset to work because that was our only means of surviving.
I have never experienced anything like what some of my American friends have experienced growing up. Or, what some still experience.
I'm certainly not intending to belittle your experiences or trying to "one up you" on who was poorer or had it harder. Just be aware that Appalachia is still filled with hurting, poverty-stricken people of different colors.
Poverty never comes with privilege, regardless of color.
Dr. Glenn Mollette is a syndicated American columnist and author of American Issues, Every American Has An Opinion and ten other books. He is read in all 50 states. The views expressed are those of the author and are not necessarily representative of any other group or organization.
This article is the sole opinions of the author and does not necessarily reflect the views of The Sentinel. We welcome comments and views from our readers.
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B.O. basics
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