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disabilities
'Monstrous' Trump Rule Change Could Slash Benefits to 400,000 Adults With Down Syndrome and Other Disabilities
"As they push to build a $400 million ballroom, they are stripping disabled Americans of their meager benefits," said one congressional candidate.
Apr 29, 2026
The Trump administration is pushing forward with a new rule that could strip as many as 400,000 low-income adults with disabilities of hundreds of dollars per month.
ProPublica reported on Tuesday that the Trump administration was planning a major rule change to the Supplemental Security Income (SSI) program, which provides basic income to adults with severe disabilities like Down syndrome and autism and some indigent elderly people who may struggle to support themselves.
The program, which serves around 7.5 million Americans, typically provides payments of around $600-700 per month—enough to help pay for basic needs like food and shelter, but not enough to live on independently, especially for those already struggling due to disabilities. As a result, many SSI recipients still reside with family members.
Under the rule change, ProPublica reported that the administration would "penalize" these individuals "simply for living in the same home as their families, according to four federal officials, internal emails, and a federal regulatory listing."
According to the report:
The administration is working on a rule change that would deduct the value of a disabled adult’s bedroom from their SSI allotment, even if the family members they live with are poor enough to qualify for food stamps. This would mean slashing the benefits of some of the most low-income SSI recipients by up to a third... or ending their support altogether.
Kathleen Romig and Devin O’Connor of the Center on Budget and Policy Priorities explained the proposed rule change in a policy briefing in August:
Currently, very low-income disabled or older people who receive SSI can have their benefits reduced by up to one-third (about $300 a month) if they receive “in-kind support and maintenance,” including a place to stay. Similarly, SSI recipients can have their benefits reduced based on the income of their parents (if they are under 18) or spouse, under the assumption that they will contribute to an SSI beneficiary’s living expenses. However, these reductions don’t apply to beneficiaries who live in a household that receives “public assistance,” including food assistance programs like the Supplemental Nutrition Assistance Program (SNAP). That’s because households financially precarious enough to qualify for those benefits can’t afford to financially support SSI recipients...
SSI’s public assistance household rule has been updated to reflect the ways struggling families make ends meet—but the Trump administration proposal would return the program to the outdated criteria first established in 1980... This change would ignore the reality that families who receive SNAP have very low incomes—the typical multi-person SNAP household with at least one member who receives SSI has an annual income of around $17,000, well below the poverty line.
According to ProPublica, one woman with Down syndrome in Philadelphia, 22-year-old Shy’tyra Burton, who has struggled to find a job due to her intellectual disability, is expected to see her $994 monthly benefit cut by about $330 a month because she has continued to live with her father, Rondell, a sanitation worker.
He makes about $2,000 a month, or $24,000 annually—well below the federal poverty line for a single parent with multiple children. Even with the SSI payment, which allows Shy’tyra to pay for her own internet and meals, Rondell said that he's "still barely managing."
Using actuarial figures from the Social Security Administration (SSA), which administers the program, ProPublica determined that as many as 400,000 disabled people and indigent elderly people could lose some or all of their benefits.
"These are not people gaming the system," argued Rep. Mike Levin (D-Calif.), whose state could see more than 57,000 people lose benefits as a result of the cuts.
"Fewer than one in three applicants is approved," he said. "The process takes years and requires medical and vocational evaluations.
"The administration calls this rooting out waste, fraud, and abuse. It is not," he continued. "This policy costs more, helps no one, and punishes families for taking care of their own."
The rule change is being reviewed by the White House Office of Management and Budget (OMB), where it will be subject to editing before being sent back to the Social Security Administration, where it will face a period of public comment.
The OMB is administered by Director Russell Vought, one of the architects of the Heritage Foundation's far-right Project 2025 agenda. In addition to using last year's government shutdown to withhold SNAP benefits from around 42 million Americans and starve blue states of funding for federal programs, he has used the office to push for a full-fledged assault on benefits for the poor, disabled, and elderly, including those administered by the SSA.
Vought reportedly led the charge for the SSA to raise the age threshold for disabled adults receiving Social Security disability insurance from 50 to 60, or to remove age as a factor altogether when determining whether a disabled individual has the capability to work. According to the Urban Institute, the plan could have kicked 750,000 people off their disability payments and reduced payouts by $82 million over the next decade.
The administration ultimately backed off the proposal once it became clear that many of those hurt would be older coal miners and factory workers in red states, some of Trump's core demographics of support. But it is still reportedly soldiering ahead with its plan to cut SSI payments for those with disabilities.
Vought has justified these and other dramatic cuts as part of efforts to make the government more efficient. But ProPublica found that while cutting Burton’s benefit could save taxpayers about $11 per day, it could mean her father is unable to care for her, forcing her into a state facility that costs hundreds of dollars a day in public money.
"The Trump rule would have harmful consequences beyond the loss of benefits and eligibility, creating heartbreaking dilemmas for SSI recipients and their families," explained Romig and O'Connor. "It could discourage families from offering help to their loved ones, for fear of jeopardizing their meager benefits. It could force more people to turn to institutional care because they could no longer afford to live in the community."
Fred Wellman, a military veteran and Democratic candidate for the second congressional district in Missouri—a state where around 6,000 disabled and elderly people could potentially be affected by the proposed cuts—called the policy a “truly monstrous decision” especially in light of a recent Republican proposal for Congress to allocate $400 million for Trump’s White House ballroom project after a court ruled it could not be funded using donations.
"As they push to build a $400 million ballroom, they are stripping disabled Americans of their meager benefits," Wellman said. "Over and over, this administration and the GOP choose cruelty over caring. It’s just sick."
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Trump Launches 'Appalling' Assault on Programs for Children With Disabilities
"No one is forcing Donald Trump to fire the people who make sure students with disabilities can get a good education—he just wants to," said Sen. Patty Murray.
Oct 22, 2025
The Trump administration has launched what advocates, parents, and Democratic members of Congress are calling an unlawful and immoral attack on programs that provide education services to millions of children with disabilities across the United States.
Earlier this month, the administration announced mass firings at the Office of Special Education and Rehabilitative Services (OSERS), terminations that would hollow out the agency tasked with administering and overseeing programs that support students with disabilities—part of President Donald Trump's effort to abolish the Education Department without congressional approval.
"This reckless and illegal action is another step toward the administration's goal of dismantling the Department of Education," Kathleen Romig, director of Social Security and disability policy at the Center on Budget and Policy Priorities, wrote Tuesday. "With this latest action, the Trump Administration is effectively shuttering [the Office of Special Education Programs], which distributed $15 billion in federal grants to schools in 2025."
"These grants," Romig noted, "pay for special education teachers and aides, speech and occupational therapists, assistive technology, screening and early intervention for infants and toddlers, and other critical services and supports that millions of families rely upon."
Sen. Patty Murray (D-Wash.) said it is "appalling" that the Trump administration is exploiting the ongoing government shutdown to escalate its destruction of the Education Department.
"No one is forcing Donald Trump to fire the people who make sure students with disabilities can get a good education—he just wants to," said Murray, the top Democrat on the Senate Appropriations Committee.
While a federal judge paused the OSERS firings with a temporary restraining order last week, reports and public comments from Trump officials indicate that the administration's assault on programs that aid students with disabilities is just beginning.
The Washington Post reported Tuesday that the administration is considering placing the Individuals with Disabilities Education (IDEA) Act program under the purview of the Health and Human Services Department, led by Robert F. Kennedy Jr.
More than 15% of students in the US receive special education services. IDEA also provides support to hundreds of thousands of infants and toddlers each year.
Sasha Pudelski, director of advocacy for AASA, the School Superintendents Association, told the Post that "moving special education out of the Department of Education demonstrates a disregard for the educational needs of students with disabilities."
"America's special education students are embedded at every level, in every program that the department oversees," Pudelski added. "It's a step backward for education and for our country."
The National Education Association (NEA), the country's largest teachers union, published an article on Tuesday featuring comments from parents alarmed by the administration's targeting of programs that their kids rely on.
"I'm a proud parent of a neurodivergent student, and I'm heartbroken,” Kim Pinckney, the mother of a child with autism, ADHD, and speech disorders, told NEA Today, the union's news publication. "I am one of those parents with the audacity to love my child and to believe he deserves a free and appropriate education. I am one of millions of parents who have the audacity to believe our children are worthy and that they have their own unique genius that deserves to be unearthed."
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This Disability Pride Month Is About Survival, Not Celebration
This month, skip the slogans. Ask: Who do I know that needs care? Who will I support when the next cut comes? What am I building that lasts beyond this news cycle? Or this election cycle?
Jul 26, 2025
Every July, we’re told to smile for the cameras. Show our pride. Celebrate how far we’ve come.
But what if all we feel is rage?
This year, Disability Pride Month arrives under a government that is actively tearing down the few protections we have left. Programs that kept us out of institutions—gone. Jobs focused on accessibility—eliminated. Community care infrastructure—defunded, dismantled, or disappeared entirely. And somehow, no one’s sounding the alarm. Or perhaps there are too many alarms going off at once, and nobody can distinguish them anymore.
There’s no parade for the disabled workers quietly laid off when Diversity, Equity, Inclusion, and Accessibility (DEIA) offices were shuttered. No ribbon cutting for the collapse of the Administration for Community Living. No national reckoning when misinformation about disability spreads on federal letterhead and leads to real-world harm. Harm like the little people I know who were harassed in airports after the Federal Aviation Administration (FAA) became a political target following the D.C plane crash when our president attributed the disaster to our community.
What we’re seeing now is the result of years of bipartisan disinvestment. It’s just happening louder, faster, and crueler than before.
This isn’t bureaucratic drift. It’s intentional. And it’s happening while the rest of the country posts inspirational quotes about inclusion.
I run New Disabled South with the mission of improving the lives of disabled people and building strong disability justice and rights movements in the South, and I can tell you: This moment is not about pride. It’s about survival.
The Trump administration recently directly attacked a federal employment program that helped place disabled people in jobs across agencies like the FAA. Instead of telling the truth, they called it a “diversity hiring” loophole and singled out specific disabilities, including dwarfism. The backlash from right-wing radical folks was immediate and violent. And still, no one covered it.
And yet, the rollback didn’t start this year. It didn’t even start with this administration. President Ronald Reagan, with a Republican Senate from 1981-1987, launched a major campaign to reduce the size of the federal government. Significant cuts to Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) led to hundreds of thousands of people losing disability benefits after aggressive reevaluations.
And now, anti-DEI rhetoric has escalated into anti-access policy. Entire programs and research centers have been shuttered under the guise of neutrality. Leaders who run centers for racial and disability justice are currently fighting lawsuits claiming that simply existing in these spaces is discriminatory. The irony would be laughable if it weren’t so destructive.
The people affected by these attacks are the ones making our country more livable, accessible, and just. These aren’t abstract programs. These are lifelines. I know, because I grew up on them.
My parents relied on Medicaid home and community-based services (HCBS) to care for my siblings and me at home. We were triplets, all with cerebral palsy. Doctors encouraged my parents to put us into institutions. But because of HCBS and other programs, we weren’t institutionalized—we were raised in our own home, in our own community, with the people we love. I’m here because of that care. And I’m terrified that families like mine won’t get the same chance.
This is the part where I’m supposed to offer hope. But here’s the truth: We are being failed. And it’s time to name that, without softening it.
Disability justice is not a one-month-a-year conversation. It is not a post. It is not a panel. And it cannot be siloed off from broader fights for racial, gender, and economic equity. Being a part of this community, we are not a niche. We are a movement. This affects us all; more than 1 in 4 adults in the United States have some type of disability, and that’s not counting the number of people who have been and continue to be disabled from Covid-19. And we are all deeply, inextricably linked to every community being attacked right now.
When Black students lose access to equity programs, disabled students lose.
When LGBTQ+ protections are stripped away, disabled people lose.
When DEI offices are dissolved, accessibility gets erased too.
And when we talk about disability, we must also talk about race, poverty, gender, sexuality, and geography. Especially in the South, where I live and organize, policy decisions made in D.C. don’t just ripple—they rupture. The South has the nation’s highest rates of disability, and it’s been made clear with recent cuts to Medicaid and other essential programs that the federal government isn’t coming to save us. No matter who’s in charge, disability is too often treated as an afterthought at best or a political liability at worst. What we’re seeing now is the result of years of bipartisan disinvestment. It’s just happening louder, faster, and crueler than before.
We need care webs—mutual aid rooted in relationships, not rescue. These are informal, hyper-local networks where people look out for one another. Not just with money or donations, but with time, attention, and consistency. Someone to check in. Someone to help navigate a job search or bureaucratic nightmare. Someone to drive you to the doctor when paratransit doesn’t show up. Someone who knows your access needs and shows up anyway.
This isn’t about creating a perfect system. It’s about refusing to let each other fall through the cracks.
Building a care web can be as simple as texting a neighbor, posting in a local group, or organizing around one person’s immediate needs. You don’t have to be disabled to start one. You just have to decide that no one should be left behind because a government decided they didn’t matter.
These may seem like small acts, but they are how we survive. They are how we resist.
So this month, skip the slogans. Ask: Who do I know that needs care? Who will I support when the next cut comes? What am I building that lasts beyond this news cycle? Or this election cycle?
That’s the work. That’s the rage. And that’s how we move forward together.
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The Last beacon of Hope Is Failing Refugees With Disabilities
Our work to ensure that forcibly displaced people with disabilities have equal access to pathways to safety and lasting refuge has never been easy, but since U.S. President Donald Trump took office, it has become nearly impossible.
Apr 20, 2025
Hassan’s life was not always confined to a single room. But when he became a refugee, he didn’t just lose his home, he lost his freedom and independence.
Hassan is a young refugee man from Sudan with a physical disability that requires him to use a wheelchair. Before the war in Sudan forced him to flee to Egypt, he lived in an accessible home, which allowed him to move around independently. Now, he is trapped without a wheelchair on the fourth floor of a building with no elevator. His apartment is completely inaccessible, forcing him to spend 24 hours a day in bed.
I learned about Hassan’s journey on a call I convened as part of my role leading the Disability Inclusion and Accessibility Program at the International Refugee Assistance Project (IRAP), a global legal aid and advocacy nonprofit. Our work to ensure that forcibly displaced people with disabilities have equal access to pathways to safety and lasting refuge has never been easy, but since U.S. President Donald Trump took office, it has become nearly impossible. This population is under attack for being refugees, people with disabilities, and beneficiaries of U.S. foreign aid.
“He thinks if only the president knows what he is going through, and that all his resettlement expenses will be taken care of by volunteer sponsors in the U.S., he will change his mind.”
The sheer volume of anti-immigrant policies enacted by the Trump administration risks obscuring the harm each one inflicts on real people. The executive orders issued by the new U.S. administration since January 20 have been devastating for many, but especially for refugees with disabilities and their families. It has also been a loss for the local communities ready to welcome them.
During my meeting with Hassan, I met some of the generous families in Ohio who had come together to support Hassan and his family. When they learned about the Welcome Corps, the private sponsorship program which allows Americans to directly support refugees, the families worked day and night to meet all the requirements to sponsor Hassan’s resettlement to the United States.
“Since then, Hassan has been focused solely on how living in the U.S. will change his life. Without a job and unable to leave his home, he has been spending all of his days following the progress of his sponsors. But the complete ban of the refugee admissions program destroyed all his dreams. It was like a tornado demolishing all we had built with just a few words,” one of Hassan’s sponsors told me.
Hassan is just one of millions of people with disabilities forcibly displaced around the world. While the United Nations doesn’t collect data on the exact number of refugees with disabilities, estimates suggest there may be nearly 18 million people with disabilities in need of resettlement. With the end of programs like the Welcome Corps and the cuts to U.S. foreign aid, their already shaky support system has all but collapsed, leaving refugees with disabilities and their families with zero support.
I have learned in my career as a refugee rights advocate and disability inclusion activist that refugees with disabilities are the last group to be included and the first to be excluded. When challenges arise, refugees with disabilities are on the frontlines.
In nearly every refugee-hosting country, refugees with disabilities are denied access to the services available for citizens. Many of them cannot even obtain disability certificates. As a result, refugees with disabilities and their families solely rely on humanitarian assistance provided by the United Nations or NGOs to access medical support, rehabilitation, assistive devices, and many other needs: a tiny stream of support which is now almost dry with significant cuts to U.S. foreign assistance funds.
It is extremely hard to meet the resettlement eligibility criteria set forth by the U.N. and many destination countries. Having a medical need that can’t be met locally can be a factor in being considered for resettlement, but many refugees with disabilities do not have the information and resources necessary to request this consideration. Those who can access this process often get rejected, and even for those who are accepted, the refugee process is long and complicated. This can mean years, sometimes decades, without life-saving healthcare, accessible homes, or any education or growth opportunities.
That is why innovative programs like the Welcome Corps were a beacon of hope for many refugees with disabilities who were left out of the U.N.-based resettlement. And now, Trump’s refugee ban is pushing them back into a situation where even the inadequate support they used to receive has been demolished due to the foreign aid cuts. Even though federal judges have blocked the government from further implementing the refugee ban and the cuts to USAID, the government has done little to comply with the orders.
The dire situation of people like Hassan requires the Trump administration to take immediate meaningful steps to resume the U.S. Refugee Admissions Program. Such a resumption would be consistent with recent federal court orders and congressional intent. Funding for humanitarian and refugee assistance programs, in particular disability inclusion funding, must also be immediately restored. Those advocating for refugee rights also need to prioritize finding solutions for refugees with disabilities and include their voices in their advocacy.
Hassan’s sponsor told me: “I don’t know how to respond when Hassan asks me about the future. He wishes to speak to the president himself to explain his situation. He thinks if only the president knows what he is going through, and that all his resettlement expenses will be taken care of by volunteer sponsors in the U.S., he will change his mind. Hassan wants the president and the American people to know that when given the opportunity in a more accessible environment, refugees with disabilities can flourish and fulfill their potential.”
I couldn’t say it better myself.
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When 6,000 Immigrants Can Be Declared Dead, No One’s Benefits Are Safe
It would be short-sighted to view this as an immigration issue. In fact, this move reveals both our common vulnerability to the whims of high-up decision-makers, and our shared humanity.
Apr 17, 2025
When the Social Security Administration recently reclassified more than 6,000 living and breathing immigrants as dead in order to deny them the Social Security numbers and benefits they legally held, I empathized with those migrants.
I’m not an immigrant, and I don’t receive Social Security benefits. Yet my family, like millions of other Americans, has felt the pain and helplessness of losing access to services and benefits through no fault of our own.
The technique of declaring thousands of people “dead” with one stroke of the pen is particularly cruel and epitomizes the long-standing dehumanization of immigrants in this country.
At first glance, it might seem they target someone else, somewhere else. Upon further reflection, it is evident that the actions and tactics they deploy affect everyone.
But it would be short-sighted to view this as an immigration issue. In fact, this move reveals both our common vulnerability to the whims of high-up decision-makers, and our shared humanity.
As the Trump administration inflicts one cruel injustice after another, rapid fire, on immigrants and other vulnerable groups, these updates flash across screens as discrete, targeted acts. But it is more important than ever to focus on what we have in common and reframe these headlines as coordinated actions within systems that threaten everyone’s well-being.
A few years ago, my husband wrote the annual check for his life insurance policy, sealed it in the company’s return envelope, and dropped it into the official blue U.S. Postal Service mailbox near his bank. To his surprise, the life insurance company contacted him shortly after, notifying him that his policy was canceled due to nonpayment.
Turns out, he was one of thousands of victims of mail theft and check fraud in our town and throughout the country. Just this year, the FBI and the U.S. Postal Inspection Service warned about mail theft and announced that check fraud has recently doubled.
My husband reported the crime to the police, and his bank covered the amount of the lost check. However, the life insurance company refused to reinstate his policy because during all those years he had been paying the annual fee, he also developed a chronic disease. As a small business owner with three children, my husband watched as an essential financial tool, put in place for our family, disappeared overnight—despite the fact that he had done everything right. Just like those 6,000 immigrants.
The health insurance industry has long employed the strategy of “deny, defend, and depose” to avoid covering the costs of important treatments for the sick and suffering who continue to pay climbing premiums. A 2025 article in the American Journal of Managed Care states that “insurance claim denials have risen 16% from 2018 to 2024, affecting access to essential medications like insulin and albuterol.” At the same time, health insurance companies’ net profitability increases.
Those immigrants followed strict rules and were granted Social Security numbers; they did nothing wrong. But just as their identities were wiped away, the high rate of health insurance claim denials financially wipes out millions of Americans. Almost half a million Americans declared personal bankruptcies in 2024, with medical debt the top cause.
Disability benefits are notoriously difficult to receive, and even when accessed, they are tenuous. According to the non-partisan USA Facts, “38% of applicants who meet technical requirements are accepted initially, but 53% of applicants who appeal that decision are ultimately approved.” However, the appeals process can be burdensome and last years. Paying into a private disability insurance plan holds no guarantees either.
Given that last year, the Centers for Disease Control and Prevention reported that “more than 1 in 4—over 70 million—adults in the United States reported having a disability,” everyone in this country knows someone who contends with their disability and simultaneously battles for benefits that are rightfully theirs. It shouldn’t be difficult, then, to empathize with immigrants’ dual plight: they must ward against diffuse and dangerous anti-immigrant sentiment and at the same time fight for basic benefits promised to them.
Even recipients of disability insurance cannot rest easy. They are often stalked and photographed by investigators who use highly selective photos to “prove” the person is able to work. Now, surveillance is digital, too. Algorithms and new surveillance technologies can be laced with bias, trespass privacy laws, and lead to unjust claim denials for the people who can least defend themselves.
These new technologies also surveil migrants, with the same built-in biases. A scholarly article published this year describes the system as “a vast digital dragnet.” Once sacred boundaries that protected the privacy of income-tax payers have now been violated to help the Department of Homeland Security locate tax-paying immigrants. Once breached, that once-clear line of privacy is now erased for anyone.
The policies and actions coming from the Trump administration can feel like a barrage—because they are. At first glance, it might seem they target someone else, somewhere else. Upon further reflection, it is evident that the actions and tactics they deploy affect everyone. No one deserves to capriciously have the rug pulled out from under them through no fault of their own—yet we’re barreling toward a future where that’s commonplace, and possibly the norm.
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'Thank You, Kamala': Sanders Welcomes Harris Plan to Expand Medicare
"Congratulations to Vice President Harris for announcing a bold vision to expand Medicare to cover not only home healthcare, but also vision and hearing."
Oct 09, 2024
Independent U.S. Sen. Bernie Sanders of Vermont—a longtime universal healthcare advocate—on Wednesday hailed aw proposal by Democratic presidential nominee and Vice President Kamala Harris to expand Medicare to cover in-home care for seniors as well as dental and vision for the first time ever.
As Common Dreams reported Tuesday, labor unions and consumer advocates applauded Harris' plan—unveiled on the ABC talk show "The View"—to expand Medicare coverage in order to better serve what the Democratic nominee called the "sandwich generation" of middle-aged Americans who are simultaneously providing for their children and aging parents.
Responding to the proposal, Sanders said, "Congratulations to Vice President Harris for announcing a bold vision to expand Medicare to cover not only home healthcare, but also vision and hearing."
The senator continued:
It is no secret that we have a major crisis in home healthcare. Millions of seniors would prefer, when possible, to receive care in their homes rather than be forced into nursing homes. Kamala's plan is a major step forward not only in improving the quality of life for seniors and their families, but also in saving the healthcare system large sums of money.
Further, her plan to expand Medicare to cover the cost of vision and hearing is enormously important. In the wealthiest country on Earth, millions of lower-income seniors today are unable to afford the hearing aids and eyeglasses they desperately need. That is not acceptable. Every senior in America should be able to access these basic healthcare needs.
"Thank you, Kamala," added Sanders, who has been campaigning for Harris across the country and plans to visit the Midwest this week.
Sanders' remarks echoed those of progressive healthcare advocates, with Social Security Works executive director Alex Lawson on Tuesday calling Harris' plan "life-changing for seniors, people with disabilities, and those who love them."
"Currently, seniors and people with disabilities who need care that family can't provide are too often warehoused in dehumanizing nursing homes," Lawson continued. "Often, these nursing homes are owned by private equity corporations who are exploiting patients for profit. Under the Harris plan, seniors and disabled people would have the freedom to stay in their own homes."
"This is a universal benefit," Lawson added. "Everyone on Medicare would qualify. This is a win for everyone in America—except the billionaires."
Harris' campaign and supporters contrasted the Democratic nominee's plan with the White House record of the Republican presidential candidate, former President Donald Trump, and sounded the alarm on the dangers he poses to Medicare and Social Security.
"Trump tried to cut Medicare and will cut the program as president," the Harris campaign said Tuesday.
Some critics also warned how Project 2025—the far-right initiative to expand U.S. presidential power and purge the federal civil service—poses a dire threat to seniors' public health by making private, for-profit Medicare Advantage plans the default option for all Medicare enrollees.
Harris' campaign added: "Trump spent a long career exploiting seniors, mocking disabled Americans, trying to take away seniors' hard-earned benefits, and supporting others who harm them. As president, Trump tried to destroy the Affordable Care Act and to cut Medicare and plans to do it again."
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Climate Change Is a Current Crisis for Family Caregivers
It is imperative that adaptation strategies and emergency response plans include the unique needs of the elderly.
Dec 09, 2023
In discussions about climate change, we often gravitate towards those affected by devastating wildfires, catastrophic hurricanes, and vanishing coastlines. Rarely do we zoom in on the intimate, day-to-day ways it reshapes the individual lives of everyday people. As a caregiver for my elderly parents, I've experienced firsthand how climate change impacts the aging population, a narrative told less frequently but just as critical in weighing the costs of our inaction on climate.
In the blink of an eye, many of us went from sons and daughters to climate responders for our parents. During Michigan's infamous "Snowmageddon" in 2015, for example, my father, who was relearning to walk after a health scare, constantly fell into steep snow drifts. This meant he had to wear wet pants in the freezing cold and through doctor appointments, risking hypothermia. That same winter, my mom had to mail canned foods to my great aunt, who was trapped in her Grand Rapids home without groceries because relatives and even neighbors could not safely reach her due to the massive amounts of snowfall. These life-threatening situations, no different from what other families experience, were induced by our changing climate.
Living with these challenges means perpetual fear. I'm terrified of my mother slipping on black ice and breaking her hip, of my blind father's inability to detect and avoid ice patches, especially as snow-muffled sounds interfere with outdoor navigation. When a severe ice storm led to a power outage, ensuring my parents' safety in their unheated home was a logistical nightmare, from planning how to navigate slippery sidewalks and driveways in the middle of the night, to undriveable road conditions without traffic lights, to replacing the lost food. The situation was further complicated by the fact that their landline is tied to the internet, hampering their inability to make calls in a power outage. My own cell phone lost service because the cell tower was out.
Creating a rain garden to manage increased rainfall and flooding is a daunting task for someone with a bad back or severe allergies.
But the impacts of climate change extend beyond newly increased winter extremes. For my mother, who relies on walks with friends for mental and physical wellness, unpredictable weather patterns like poor air quality or extreme heat have imprisoned her indoors more frequently. Our lives now revolve around a complex choreography of scheduling doctors' appointments between forecasted weather extremes and finding ways to mitigate newfound environmental hazards.
These climate shifts bring new responsibilities for family caregivers. Each decision, from managing the heightened frequency of snow removal services to ensuring safe, accessible outdoor spaces, is a balancing act between health, safety, and financial constraints. Creating a rain garden to manage increased rainfall and flooding is a daunting task for someone with a bad back or severe allergies.
Climate change has subtly altered our natural environment, bringing unexpected challenges. Overgrown yards in our neighborhood release rampant pollen, aggravating my father's allergies. His thin and tearing sclera makes each sneeze a cause for anxiety. New growths of poison ivy near our porch, previously unheard of, threaten his sensitive skin.
Beyond the immediate environmental hazards, there are indirect, equally unsettling effects. The nutritional value of food is changing, with implications for elderly health. Delivery of essential prescriptions, like those from the VA, gets complicated with intense rainfall, heat, cold, and snow, risking delays or damage.
Often, people ask why family caregivers don't opt for institutional care. The answer is twofold. Culturally, my upbringing emphasizes family-based care. I believe that our elders should be surrounded by love and familiarity, and that caring for them is an honor. This perspective is reinforced by broader arguments for deinstitutionalization, which champions dignity and independence for the elderly and disabled in their communities.
Not that climate challenges are exclusive to home settings. Costly facilities also face power outages, complex evacuation challenges, and disrupted staff and supply chains due to extreme weather. Such instances further unveil broader systemic issues, pointing to the need to better support caregivers in the face of climate change.
As our population ages, our laws and regulations must acknowledge and address the unique hurdles of home-based elder care. We need infrastructure adaptations and proactive policymaking that accommodate a range of familial choices and take into account the changing environmental realities.
Organizations like Area Agencies on Aging and the Veterans Administration already offer comprehensive, hands-on training programs for family caregivers. To help caregivers effectively manage extreme weather risks, their curricula should be updated to provide at least 20 hours of focused instruction on how climate change affects vulnerable populations. Topics covered should include how to create detailed emergency plans and how to proactively prepare for environmental changes.
Beyond practical skills, these programs should also address the socioemotional impacts of climate emergencies on the elderly and disabled. Events like hurricanes, wildfires, heat waves, and drought can heighten feelings of vulnerability and anxiety, adversely affecting mental health. Caregivers, who often bear the brunt of these disruptions, risk burnout without adequate support. Training should therefore include emotional first aid strategies to help them maintain a reassuring presence, discuss fears and concerns, and foster resilience and security.
Last but never least, caregiver self-care is vital. Training needs to cover how to recognize burnout signs, stress management techniques, and the importance of a supportive community. A holistic approach to care safeguards the mental and emotional well-being of both caregiver and care recipient. This stability is crucial for sustainable caregiving in the face of climate change's challenges.
Climate change is not a distant threat for family caregivers; it's a current crisis reshaping the lives of millions. The experiences of caregivers like myself highlight the overlooked nuances in our response to this global challenge. It's imperative that adaptation strategies and emergency response plans include the unique needs of the elderly. Only then can we claim to be truly addressing the breadth and depth of climate change's impact on our society.
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Disability Justice Is Key to Achieving the Sustainable Development Goals
As long as people with disabilities are excluded and denied their human rights, the promise of the global goals is doomed to fail.
Aug 23, 2023
Growing up as a girl with a disability in Pakistan, I knew that my opportunity to go to an inclusive school and progress to university was unusual. For many children with disabilities, particularly girls, intersecting stigma and discrimination means that they are regularly excluded from learning or even seen as not worth educating. Children are sometimes hidden at home or protected by their parents, either viewed as a curse from God, or some kind of special blessing. Or, more mundanely, schools simply aren’t accessible or affordable for them. These barriers are faced by children in many counties, and as a result, children with disabilities are almost twice as likely to have never attended school than other children.
Education can be just one of the first hurdles in a life of discrimination for many people with disabilities. Despite progress on disability rights in the past few decades (including the adoption of the groundbreaking U.N. Convention on the Rights of Persons with Disabilities in 2008) the 1.3 billion people in the world who have disabilities still face a huge range of barriers to our full participation in society. That’s 16% of the global population. From Islamabad to Iowa, we still often find ourselves excluded in education, healthcare, travel, politics, and public services. For example, only 1 in 10 people in the world have access to the assistive technology and disability services they need to live a full life, and people with disabilities are up to twice as likely to live in poverty than people without disabilities. In many places in 2023, we are simply tired of having to constantly fight for our basic human rights.
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This year, the world comes to the halfway point of the Sustainable Development Goals (SDGs), the globally adopted targets to address poverty and inequality by 2030. These visionary goals aim to transform our world for the better and have served as a guide for countries to follow to improve living conditions and protect the planet. They are ambitious, but they have proven useful in holding governments to account and focusing international advocacy efforts on development and human rights. In a world full of difficulties and divisions, the SDGs offer us a clear vision of a society we can aspire to and continually strive for.
At this midpoint in September, world leaders will gather at the U.N. SDG summit in New York on the 18 and 19 to assess progress on the goals. It is planned as a moment of action and hope, to result in a negotiated political declaration by all member states.
So how are the SDGs going? Right now, not so well. Evidence shows that progress on them has derailed. A recent U.N. report highlights that most of the goals are “moderately to severely off track” and only around 12% are on course to be achieved (according to a preliminary assessment of around 140 targets with data). For the first time in decades, we are seeing global income equality going into reverse. The pandemic has seen existing inequalities deepen, education disrupted, and huge pressure put on already weak health systems. At the same time, the world faces growing threats from conflict, increased cost of living, and the climate crisis.
Without adequately addressing the needs of people with disabilities and other marginalized groups, the original promise of the SDGs to “leave no-one behind” is in peril.
The impacts of these reversals are disproportionately felt by marginalized populations. The vast majority of which live in low- and middle-income countries, where there are already often huge challenges to development. And as the U.N. report shows, people with disabilities are one of the groups being hit hardest by the lack of progress on poverty and inequality. This is on top of the base level of difficulties we can face in getting our rights acknowledged or the services we need.
The impacts on women and girls with disabilities are also huge. Globally, more than half of people with disabilities are women, and more than 1 in 5 women have a disability. Women with disabilities can face double or triple discrimination as a result of intersecting prejudices, and so face increased levels of gender based violence, harassment, and stigma than other women. This is further exacerbated during crises and conflict. During the pandemic, for example, reports of domestic violence skyrocketed, with women with disabilities being disproportionately affected.
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Without adequately addressing the needs of people with disabilities and other marginalized groups, the original promise of the SDGs to “leave no-one behind” is in peril. This is why I have decided to take part in a new global campaign, Promise in Peril, organized by Equal World. We are calling on world leaders to ensure that the political declaration of the SDG Summit in September, and all national commitments, focus on reaching those who are being left furthest behind. With just seven years left until the 2030 deadline, this moment is a wake-up call to nations to take immediate measures that would speed up progress on global development.
At present, the implementation, monitoring, and evaluation of the SDGs do not sufficiently include people with disabilities. This means that the people who are most at risk of being left behind are the ones whose voices are being ignored in efforts to tackle inequality, poverty, and climate change. This is particularly true for women and young people with disabilities. The declaration needs to include specific references to disability and must prioritize inclusive and equitable financing of the SDGs.
People with disabilities need to be meaningfully involved in the planning and implementation of policies that affect our lives. There can be nothing about us without us. To achieve this, the inclusion of people with disabilities needs to be properly resourced and budgeted for and committed to by states at a national level. If not done, the disability community and other underrepresented groups will continue to be excluded from taking part in national SDG plans.
Our call for equity is not a polite request. It is a demand and a moral imperative.
Governments must protect and guarantee the rights of people with disabilities, using a framework that centers on and respects human rights and well-being. The delivery of the SDGs should be based on a strengthened, more inclusive, and cooperative multilateralism.
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Looking beyond the halfway point, the SDG declaration alone is important, but it is not enough. This September should be a wake-up call to the world on how much we have left to do. Commitment is only the first step and should be followed by the implementation of national legislation and policy in a way that actually realizes the SDGs. It’s vital to have national and international laws and conventions, such as the Americans with Disabilities Act in the U.S., and the U.N. disability convention, but they also need to be enacted and enforced. For example, it’s important to have a law that says, “Shops and restaurants can’t discriminate against customers with disabilities,” or “We need more people with disabilities in employment,” but no good if businesses can flout it easily without consequences. We need clear, tangible actions to be taken to ensure disability rights are respected and upheld.
One important mechanism for addressing poverty experienced by people with disabilities is universal social protection. This is especially important in times of crisis, as was seen during the pandemic when millions of people were left without support as countries locked down. But currently only 1% of people with significant disabilities in low-income countries have access to disability benefits, an incredibly low number. In line with the International Labour Organization Recommendation 202, we need governments to establish social protection floors as a fundamental element of national social security systems.
There also needs to be better efforts made to collect data on disability. Global data is currently only available for 2 out of 10 SDG indicators that require governments to report on how they are reaching people with disabilities. This contributes toward significant data gaps that exist globally and means people with disabilities are often invisible in policy making. Governments must commit to collecting disability inclusive data, with particular consideration of the intersection with gender. Decision-makers cannot continue to ignore 16% of the population.
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Before I met other members of the disability rights movement, I grew up thinking of my disability as something negative, as some defect with myself. It was only once I started collaborating with other activists, and hearing their experiences, that I realized that my disability is just diversity of human experience. Our rights are human rights.
Our call for equity is not a polite request. It is a demand and a moral imperative. People with disabilities must have an equal say in the policies and processes that affect our lives. Governments must take action to uphold disability rights and commit to reach the SDGs in a way that genuinely leaves no one behind.
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You can find out more about the Promise in Peril campaign, and sign their petition, at: https://campaigning.sightsavers.org/promise-in-peril/.
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I Love Working With People With Disabilities, But Lack of Federal Funds Makes My Job Harder
Our elected leaders need to start investing in people with disabilities and the organizations that support them.
May 26, 2023
I was teaching a class on personal finance to my students with disabilities when I read the story about the ant and the grasshopper. While the ant was busy putting food away for the winter, the grasshopper laid out to enjoy the beautiful day. Finally, when winter arrived, the ant had plenty to eat, but the grasshopper was starving.
I asked my students why the grasshopper wasn't prepared and, much to my enjoyment, one of my students responded, "He didn't have a calendar, so he didn't know winter was coming."
I work as a Direct Support Professional, or DSP, at Community Access Unlimited in New Jersey, where I provide daily care and support to people with disabilities in my community. When I'm not working as a DSP for individuals, I also serve as an Education Specialist for Community Access Unlimited's Academy for Continuing Education (ACE), teaching and inspiring adults with disabilities on a range of topics, from personal finance to the visual arts. I cherish my work. But it's not easy, and it's only getting harder.
Just like the ant and the grasshopper, Congress needs to plan for the future. That means passing home-and community-based services funding before our system completely collapses.
For decades, and even more so since the pandemic, DSPs like me have been dealing with rampant understaffing and high turnover, due in large part to the nationwide funding crisis for caregivers.
Providers like Community Access Unlimited rely on Medicaid reimbursement rates to pay their DSPs, and these rates have been stagnant for years. As a result, providers can't pay their workers living wages—the national average wage for a DSP is just $13.36 per hour—driving DSPs to companies like Target and McDonald's that have more consistent hours and don't rely on rates set by the government to pay their employees. The end result: Providers, dealing with rampant understaffing, are forced to shut down essential services or even close their doors completely.
The funding crisis holding DSP wages down is so dire that some states are considering radical solutions, like eliminating income taxes for DSPs in order to help them keep more earnings in their pockets.
Significant funding for home-and community-based services (HCBS) has been proposed to Congress numerous times. In 2021, President Joe Biden proposed $400 billion to expand Medicaid HCBS in the America Jobs Plan. In 2022, the Biden administration proposed $150 billion. Meanwhile, this April, Biden signed a groundbreaking executive order designed to strengthen the caregiving workforce in the U.S.
One side of Pennsylvania Avenue is clearly putting in the work. Yet, Congress continues to leave out or remove these crucial investments from congressional legislation.
Just like the ant and the grasshopper, Congress needs to plan for the future. That means passing HCBS funding before our system completely collapses.
Last year, 92% of providers reported struggling to achieve quality standards, according to a survey from the American Network of Community Options and Resources (ANCOR). The same survey shows that 83% of providers have been forced to turn away or stop accepting new referrals due to insufficient staffing, a 26% increase since the beginning of the pandemic.
Congress cannot wait until there are only a few disability providers left to provide services. Our elected leaders need to start investing in people with disabilities and the organizations that support them.
Earlier this year, ANCOR Foundation and United Cerebral Palsy (UCP) released their annual report, which provides a comprehensive look at the state of services for people with intellectual and developmental disabilities and the workforce that serves them. The report indicates that nearly 500,000 people with disabilities across the country remain on their state's waiting lists for services. It also notes that by 2030, demand for DSPs is projected to increase 37% over 2020 levels, with an estimated 7.9 million new job openings in the direct care industry.
Being a DSP is an incredible job. It brings me so much joy knowing that I'm helping people and making this world a better place. As a DSP, I provide daily support for people with disabilities taking them to doctor appointments, grocery shopping and more.
I also help people with disabilities engage with their communities, and oftentimes that means going above and beyond for them. For example, one of the women I support is deaf; to communicate with her, I not only enrolled in the ASL course offered by Community Access but also enrolled in ASL I, ASL II, and ASL III offered by a local community college. While I wasn't the best at sign language, I worked hard to sign with her and give her a sense of community.
I love what I do, and I can't imagine doing anything else. It's time our elected leaders recognize how essential this work is and pass Medicaid HCBS funding.
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'The Rulers Are Exploiting Us': Rana Plaza Survivors Still Struggle 10 Years After Collapse
54.5% of Rana Plaza survivors are currently unemployed, and 89% of them have been jobless in the past five to eight years.
Apr 26, 2023
April 24, 2023, marks the tenth anniversary of the Rana Plaza tragedy in Bangladesh. On that fateful day in 2013, the eight-story building collapsed, killing over 1,100 people and injuring more than 2,500, mostly garment workers who were producing clothes for global brands.
Sumi Akhter, 26, began work at Rana Plaza in April 2013, sewing for garment supplier New Wave Style. She somehow escaped death in the collapse but lost her mother, who worked in the same building. Firefighters rescued Akhter from the rubble of mingled steel and concrete three days after the building collapsed. Her right leg was severely injured and had become gangrenous. To save the rest of her body, doctors had to amputate. Now she has to use a prosthetic leg for walking.
Akhter recalls the day of the tragedy: "In the morning when everyone had entered the building for work, suddenly it collapsed. My coworkers were shouting, urging everyone to run. I tried to run and escape, but somehow I fell down and lost consciousness. When I regained consciousness, I found myself trapped under concrete debris. There were two dead bodies on top of my legs and a concrete beam resting on them."
"The owner is not lacking in wealth, so why did they not take action to shut down the factory?"
The incident shocked the world and brought the dark realities of the global fast fashion industry to the forefront, sparking calls for change and initiating safety reforms. Bangladesh is the world's second-largest ready-made garment exporter, after China, supplying more than 300 brands across the globe, such as Walmart, H&M, Zara, Adidas, JC Penney, and Uniqlo.
Brands such as Primark, Mango, Benetton, and Bonmarché pledged to provide compensation to survivors and to victims' families, either individually or through the International Labour Organization's Rana Plaza Donors Trust Fund.
But many of those injured in the collapse, as well as families of those who died, are still suffering hardships a decade later.
Since the incident, Akhter has been unemployed and needs to change her prosthetic leg every 1.5 to two years. While she initially received free prosthetic legs, she had to purchase the most recent one herself by taking out a loan of 90,000 taka ($846).
"Sometimes I feel like it would have been better if I just died there," she says. "We don't have that much money to afford new prosthetic legs. Also, I am uncertain about my son's future."
Renu Begum, 55, lost her son Robiul Islam Manik in the Rana Plaza accident. He was 27. Robiul worked on the seventh floor as a senior machine mechanic and was the family's main bread earner.
"The owner of the factory has never checked on us or provided any financial assistance, not even a minimal amount," says Begum. "If my son were still alive, our struggles wouldn't be as difficult. Both my husband and I are ill and unable to work. If the owner had chosen to close the factory upon seeing the cracks in the building the day before the collapse, none of these would have happened. The owner is not lacking in wealth, so why did they not take action to shut down the factory?"
A recent survey by ActionAid Bangladesh found that 54.5% of Rana Plaza survivors are currently unemployed, and 89% of them have been jobless in the past five to eight years.
Mahmudul Hasan Hridoy, president of the Savar Rana Plaza Survivors Association of Bangladesh, says some survivors now beg for a living.
Since the tragedy, there has been a notable shift in attention toward worker safety in Bangladesh's readymade garment industry. The European-led Accord on Fire and Building Safety in Bangladesh, a legally binding agreement between global brands, trade unions, and NGOs, was established in 2013 to inspect and remediate garment factories for fire, electrical, and structural safety. The Accord has made significant progress, inspecting over 1,600 factories and helping to remediate safety violations in many of them.
Similarly, the U.S.-led Alliance for Bangladesh Worker Safety, a consortium of North American brands and retailers, conducted safety inspections and remediation efforts in more than 700 garment factories. Together, these efforts have resulted in closing unsafe factories, renovating others and improving working conditions for millions of workers. They have addressed issues such as electricity and fire safety, infrastructure risks, workers' health, freedom of association, and the overall working environment.
Despite the progress made, many challenges remain.
In 2018 the Alliance handed over operations to Nirapon, an NGO, and in 2021 the Accord transferred its operations to the RMG Sustainability Council, a committee of factory owners, unions, and global brands. But reportedly, there are concerns that RSC may not be as effective as Accord in terms of safety monitoring.
The safety inspection groups don't monitor subcontractor factories, which are contracted by larger manufacturers for specific stages of production, such as cutting or sewing. These factories number more than 1,000 and employ 220,000 workers.
Asked about this issue, Bangladesh Garment Manufacturers and Exporters Association (BGMEA) President Faruque Hassan said, "We have instructed our member factories to only hire subcontractors that comply with safety regulations and take approval from the retailer client before hiring."
Low wages have not drawn the same attention as safety concerns. Rozina Begum, 25, a junior swing operator working in a garment factory, earns a monthly salary of 10,000 BDT ($95) and makes up to 13,000−14,000 ($123-$133) with overtime. She says it is tough to afford basic necessities, especially with inflation. "The cost of everyday things has gone up."
Working 10-14 hours a day to earn extra money is common, and deleterious to workers' health, says Amirul Haque Amin, president of the National Garments Workers Federation (NGWF), which represents more than 100,000 workers and has 99 registered affiliates and 1,261 factory committees.
Workers also face challenges when they are sick or injured. "Sick leaves are counted as absences," says Amin, and workers also don't always get compensation or treatment for workplace injuries. But he's optimistic about a
new workers' compensation pilot initiative launched with the help of the German and Netherlands governments. The program will cover four million garment workers.
Although workers are technically free to form trade unions, many are hesitant to do so since they still face threats, intimidation, and harassment for exercising their right to freedom of association.
The Accord emphasized the ongoing need for effective worker representation in factories. Although workers are technically free to form trade unions, many are hesitant to do so since they still face threats, intimidation, and harassment for exercising their right to freedom of association.
The COVID-19 pandemic made things harder for readymade garment workers. Many lost their jobs due to factory closures and reduced demand for clothing. To help, the government and international organizations launched initiatives like cash transfers and hotlines for labor rights. But these efforts had limited funding and failed to reach all affected workers.
After the 2013 disaster, U.S. garment imports from Bangladesh briefly dropped when the U.S. withdrew "favored" trading partner status. But after the safety reforms, imports rose again. In recent years, the U.S. trade war with China has spurred U.S. imports of Bangladeshi garments even higher, from $7.5 billion in 2021 to $10 billion in 2022.
Ultimately, international brands choose Bangladesh as a sourcing destination due to low labor and production costs. However, this results in factory owners cutting costs by exploiting workers.
Hridoy believes this will continue as long as workers don't have representation.
"The same individuals who own the garment factories also hold positions in the parliament and cabinet," says Hridoy. "There is no representative of the workers in the parliament. The rulers are exploiting [us]."
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