11 Disability Rights Activists on Where the Fight for Justice Stands

BY TEEN VOGUE STAFF: For Complete Post, Click Here…

Airlines have lifted mask mandates. The Centers for Disease Control and Prevention announced that most Americans no longer need to social distance or quarantine. Schools and employers are doing away with remote options and other accommodations for students and workers. In several states, expanded vote-by-mail access is being stripped away.

Meanwhile, many Americans with chronic illness or disabilities — whose numbers have grown due to long COVID — feel they’ve been left behind, discarded as an acceptable consequence of the return to “normal.”

We asked 11 disability rights advocates about their experiences during the various stages of the pandemic and what’s next in the fight for disability rights and inclusion. Their responses have been condensed and lightly edited for clarity.

  1. How do you think the pandemic changed the public perception of people living with disabilities or chronic illness?

In Wake of Philips Recall, Patients Still Waiting for Sleep Apnea Devices

by Jennifer Henderson: For Complete Post, Click Here…

Effects of recall reverberate through sleep medicine community.

More than a year after the start of a recall now involving more than 5 million breathing devices, doctors and patients are still feeling the effects as manufacturer Philips continues to remediate machines and weathers scrutiny from federal agencies.

The recall by subsidiary Philips Respironics has affected certain continuous positive airway pressure (CPAP) and bilevel positive airway pressure (BiPAP) machines and mechanical ventilators mainly due to potential health risks from polyester-based polyurethane (PE-PUR) sound abatement foam that was used in the machines.

Philips said at the time of the recall that the foam could degrade into particles that could enter the device’s air pathway and be ingested by the user, and that it could off-gas certain chemicals.

The issues, the company said at the time, could result in serious injury that could be life-threatening, cause permanent impairment, and/or require medical intervention. Potential health risks of particulate or chemical exposure range from irritation to toxic and carcinogenic effects, the company said.

Though the recall initially applied to between 3 and 4 million machines, that number has since grown to 5.5 million, according to the company.

Recalling such a mass of critical devices has posed several challenges. Philips still has work to do on a sprawling repair and replacement program, and federal agencies have continued to monitor the company’s progress and communications. On top of that, Philips has agreed to pay $24 million to settle kickback allegations that were being investigated by the U.S. Department of Justice (DOJ). Those allegations were unrelated to the recall and were originally brought by a whistleblower employee. (See this related story on Philips’ run-ins with the DOJ.)

Proposed Bills Would Address Long-Term Elevator Outages in Apartment Buildings

From Galloway and Collins: For Complete Post, Click Here…

Sens. Stephanie Chang (D-Detroit) and Jeremy Moss (D-Southfield) are announcing legislation to address elevator outages at apartment buildings in Michigan to help ensure building safety and accessibility for tenants.

As many of Michigan’s large residential buildings age, elevators fall into disrepair and become nonfunctional. There are times when elevators are not working for days, weeks, or even months at a time, and tenants are not receiving notification or updates from property managers.

In response, the senators introduced two bills, Senate Bills 1144 and 1145 that would require building owners to develop a written plan about how they will provide tenants with accommodations in the event of long-term elevator outages. Building owners would choose which accommodations work best for their needs, be required to share these written plans with tenants, and then submit them to the Michigan State Housing Development Authority (MSHDA) for their review.

HIGH RATES OF DEPRESSION AND PTSD FOUND IN FLINT 5 YEARS AFTER WATER CRISIS

BY DUKE TODAY STAFF: For Complete Post, Click Here…

Very high rates of depression and PTSD linked to water contamination.

Data from the largest mental health survey of the Flint, Michigan community indicate that one in five adults, or roughly 13,600 people, were estimated to have clinical depression, and one in four, or 15,000 people, were estimated to have PTSD five years after the water crisis began.

“The mental health burden of America’s largest public-works environmental disaster clearly continues for many adults in Flint,” said Aaron Reuben, a postdoctoral scholar at Duke University who led the research, which appears Sept. 20 in JAMA Network Open.

Autism and Lying

By Mette Harrison: For Complete Post, Click Here…

I find it excruciating to lie. But let me clarify a bit here. To me, lying is not what most other people would call lying. I say other people are lying a lot of the time because they say things that I consider “contrary to fact.” Most people, when I point these out, give me a funny look and say something like, “that’s not a lie.” They think of these things as “white lies” or something don’t think of them as lies at all. This is largely because their brains are not as literal as mine is. But if you tell me something that is an exaggeration or a social nicety, I will call that a lie. And you will be confused. This is often a subject of argument between me and people who are neurotypical who have no idea what I think of as a lie.

There are two kinds of lies that I see most often in the world.

1. Lying to make someone else feel better

2. Lying to make yourself look better

Most people only consider the second one a lie, and only in extreme circumstances. If you lie to make someone else feel better (“flattery” perhaps you might be able to call this), then you don’t think of it as a lie because that is what normal social interaction is. This is exactly why autistic people struggle so much with learning how to interact normally in the social world of neurotypicals. We don’t understand why flattery is necessary or good. We don’t understand how other people want to be seen (as smarter than they are, as thinner than they are, as prettier or stronger or taller than they are or whatever), so we really struggle with compliments.

NTA Blog: Improving Services to Taxpayers With Visual Disabilities

From The NTA Blog: For Complete Post, Click Here…

Millions of U.S. taxpayers are visually impaired and unable to read print material in a standard font size. As a result of a settlement agreement between the IRS and the National Federation of the Blind (NFB) on July 10, 2020, the IRS agreed to develop a process for taxpayers to request post-filing tax notices in a variety of acceptable formats, including Braille and large print. (See IRS statement, July 15, 2020.) This settlement resolved a case brought forth by several blind taxpayers and NFB who alleged the IRS was in violation of Section 504 of the Rehabilitation Act, which prohibits individuals with a disability from being excluded from the participation in, being denied the benefits of, or being subjected to discrimination under any executive agency.

Visually Impaired Taxpayers Now Have More Accessibility Options

In January 2022, the IRS implemented a new alternative media process where visually impaired taxpayers can elect to receive certain types of written correspondence in:

  • Large Print,
  • Braille,
  • Audio (MP3),
  • Plain Text File (TXT), or
  • Braille Ready File (BRF).

Taxpayers can make this election either by calling the IRS and making an oral statement, by attaching Form 9000, Alternative Media Preference, to their tax return when filing their taxes, or by mailing a separate signed Form 9000 to the IRS.  Once the taxpayer makes the election, the IRS will place an indicator on the taxpayer’s account so it will provide certain written correspondence in the selected format going forward.

Penalty Relief

If the IRS sends a standard print notice despite the taxpayer’s election to receive such notices in an accessible format, and this results in the taxpayer not taking a required action (for example, making a payment), relief from certain penalties may be available. To obtain the relief, the taxpayer would still need to establish reasonable cause, including providing the following information:

  • Did the taxpayer provide a description of the impairment that prevented him or her from reading the standard print notice?
  • What was the taxpayer’s degree of knowledge about the tax, interest, or penalty owed before receiving the standard print notice?
  • When did the IRS receive the taxpayer’s request to receive notices in an accessible format?
  • If a notice was later sent in an accessible format, did the taxpayer promptly respond to it?

Taxpayers can request reasonable cause relief by calling the toll-free number on their IRS notice or writing a letter to request “penalty relief due to reasonable cause.”

Setting Standards for Delivering High-Quality Care to Veterans with Invisible Wounds

by Natalie Ernecoff, Carrie M. Farmer, Matthew F. Amidon, Margaret C. Harrell, Jennifer Silva: For Complete Post, Click Here…

For veterans living with invisible wounds of war, care delivery organizations must define and measure standards for high-quality care. Posttraumatic stress disorder (PTSD), depression, traumatic brain injury (TBI), substance use disorders, and other “invisible wounds” are common among post-9/11 veterans and can interfere with their employment, family life, engagement with their communities, and overall well-being. Further, many veterans receive care at non-VA facilities, though the quality and programs in non-VA clinical settings are difficult to assess. Although there are effective treatments for these conditions, many veterans face barriers to accessing high-quality care. Therefore, care delivery organizations could work to ensure that the care and resources they provide are of high quality.

As a first step, the Veteran Wellness Alliance, a coalition of veteran peer network organizations and clinical provider organizations supported by the George W. Bush Institute, previously collaborated with RAND researchers to develop a shared definition of high-quality care consisting of four pillars: veteran-centered care, accessible care, evidence-based care, and outcome monitoring to improve access to high-quality care for post-9/11 veterans with invisible wounds.

Federal Courts Deliver Victories for Voters With Disabilities

By Matt Vasilogambros: For Complete Post, Click Here…

Paralyzed from the neck down, downtown Milwaukee resident Martha Chambers has difficulty voting.

She can use a mouth stick to mark her ballot and sign her name on an absentee ballot, but she has no way of folding the ballot, slipping it back in the envelope or returning it to the mailbox.

Driven by its conservative majority, the Wisconsin Supreme Court in July outlawed assistance in the absentee voting process. After that decision, Chambers worried that her caregiver — who also gets her out of bed in the morning, brushes her teeth and puts her clothes on for her — could become a criminal for ensuring she can participate in the democratic process. Chambers said she was effectively disenfranchised.

The ruling in Wisconsin was one of two big legal victories in federal court for voters with disabilities this summer. In June, U.S. District Judge Robert Pitman struck down parts of a Texas law that forbid certain assistance for voters with disabilities and voters with limited English proficiency.

The cases are part of the larger, ongoing battle over voting access. More than 20 Republican-led states enacted a wave of barriers to the ballot process in the past two years, making voting — especially by mail — more difficult in the name of preventing voter fraud, which is rare in the United States and did not affect the results of the 2020 presidential election. Voting rights advocates have challenged many of the laws. Protecting voting rights for people with disabilities is one of the few areas in which they’ve had success — and even found some consensus.

After many difficult months of voters with disabilities trying to navigate restrictive new voting laws, these legal victories are welcomed, said Rebecca Cokley, program officer for U.S. disability rights at the Ford Foundation, a New York-based philanthropy that provides grants to organizations that lead voting efforts for people with disabilities.

Final Public Charge Rule Adds Critical Protections for Immigrant Families

By Katherine Villeda, Colin Reusch: For Complete Post, Click Here…

Late last week following guidance from the Biden administration, the Department of Homeland Security released the final Public Charge Rule, taking an important step forward to undo the harm caused by the previous administration’s rule which significantly threatened access to critical services for immigrants and their families. This final rule adds critical protections and affirms that immigrants and their families can safely access health, housing and nutritional programs to which they are entitled to without fear of consequences to their immigration status.     

Here is what advocates need to know:  

  • The final rule goes into effect Dec. 22, 2022. Between now and then, the field guidance from the 1999 rule will continue to be followed.  
  • Immigrants and their families, including citizen children, can safely access non-cash health, nutritional and housing programs they qualify for, such as Medicaid, Children’s Health Insurance Program (CHIP), Supplemental Nutrition Assistance Program (SNAP), Special Supplemental Nutrition Program for Women, Infants and Children (WIC), and Section 8 housing assistance. Benefits received from these programs will not count towards the public charge test. 
  • Applying for benefits, being approved for benefits, assisting someone else to apply for benefits, or being in the same household as someone who receives benefits will not be counted towards the applicant’s immigration application.  
  • The only programs that can be considered in a public charge determination are Supplemental Security Income (SSI), Temporary Assistance for Needy Families (TANF) cash assistance, state and locally funded cash assistance for income maintenance, and long-term institutional care paid for by Medicaid (this excludes short term or rehabilitative care and home and community-based services). However, getting these benefits does not automatically make someone a public charge. Other factors such as when benefits were received, length of receipt of benefits, education, skills, income and affidavit of support will be taken into account before making a public charge determination. If a public charge determination is made, immigration officers must now state their reasons as to why someone is a public charge.  

A further analysis of the final rule can be found here.   

At a wheelchair rally, Inglis House residents protest the sale of their home

by Harold Brubaker: For Complete Post, Click Here…

ngd-Financial capitalism at its worst…

Residents fear the loss of a way of life if the facility is sold to Tryko Partners.

A group of Inglis House residents took to the sidewalk in West Philadelphia Friday afternoon to protest the planned sale of the home they deeply appreciate to a for-profit organization from Brick, N.J.

They said they fear the loss of so much they love about the nursing home at 2600 Belmont Ave., which specializes in the care of people with paralysis and impaired mobility. High-quality food, computers, museum visits, music, and shopping trips — things they may not find at other homes that can accommodate their physical needs — are some of the amenities that residents dread losing if the sale happens.

“Now it’s going to change, and not for the better,” said Annette Davis, who has lived there for eight years.

Inglis Foundation announced the sale of Inglis House in July to Tryko Partners, a fast-growing for-profit that already owns 10 facilities in the Philadelphia region. Inglis management said at the time that the nursing home loses so much money that it will eventually jeopardize the entire organization, which also provides community services and develops low-income housing for individuals with disabilities who don’t need nursing-home levels of care.

A contentious issue is the Inglis Foundation’s $240 million endowment. Management says only a slice of it is restricted to the nursing home and will continue to support the nursing home after the sale.