Month: January 2021

After a Decade of Lobbying, ALS Patients Gain Faster Access to Disability Payments

Anita Baron first noticed something was wrong in August 2018, when she began to drool. Her dentist chalked it up to a problem with her jaw. Then her speech became slurred. She managed to keep her company, which offers financing to small businesses, going, but work became increasingly difficult as her speech worsened. Finally, nine months, four neurologists and countless tests later, Baron, now 66, got a diagnosis: amyotrophic lateral sclerosis.

ALS, often called Lou Gehrig’s disease after the New York Yankees first baseman who died of it in 1941, destroys motor neurons, causing people to lose control of their limbs, their speech and, ultimately, their ability to breathe. It’s usually fatal in two to five years.

People with ALS often must quit their jobs and sometimes their spouses do, too, to provide care, leaving families in financial distress. A decade-long campaign by advocates highlighting this predicament notched a victory last month when Congress passed a bill opening key support programs earlier for ALS patients.

In late December, then-President Donald Trump signed the bill into law. It eliminates for ALS patients the required five-month waiting period to begin receiving benefits under the Social Security Disability Insurance program, which replaces at least part of a disabled worker’s income. Gaining SSDI also gives these patients immediate access to Medicare health coverage.

Advocacy groups note that the Social Security Administration still will need to set up procedures for implementing the law, before patients will see the benefits.

The Muscular Dystrophy Association, an umbrella organization for people with 43 neuromuscular conditions, partnered with other ALS groups to support the bill to eliminate the SSDI waiting period.

“We’re hopeful that it can serve as a model for other conditions that may be similarly situated,” said Brittany Johnson Hernandez, senior director of policy and advocacy at MDA.

In the weeks leading up to the passage of the bill, Sen. Mike Lee (R-Utah) sought to broaden the scope of the legislation to include other conditions. He pledged to continue to work on legislation to eliminate the SSDI waiting period for additional diseases that meet certain criteria, including those with no known cure and a life expectancy of less than five years.

Eliminating the SSDI waiting period has been a top priority for ALS advocates. There is no simple, single test or scan to confirm that someone has ALS, though symptoms can escalate rapidly. By the time people finally get the diagnosis, they are often already seriously disabled and unable to work. Waiting five months longer for financial aid can be a burden, according to patients and families.

“Five months may seem like a short period of time, but for someone with ALS it matters,” said Danielle Carnival, CEO of I Am ALS, an advocacy group. “It’s a huge win and will make a huge difference for people right away.”

Eligibility for SSDI benefits generally requires people to have worked for about a quarter of their adult lives at jobs through which they paid Social Security taxes. Benefits are based on lifetime earnings; the average monthly SSDI benefit was $1,259 in June 2020, according to the Social Security Administration. (The average retirement benefit was $1,514 that month.)

The SSDI waiting period was intended to make sure the program served only people expected to have claims that would last at least a year, said Ted Norwood, chief legal officer at Integrated Benefits Inc. in Jefferson City, Missouri, who represents SSDI applicants. But it isn’t necessary, he added, because disability rules now require that people have a condition that will keep them out of work at least a year or result in death.

“The five-month waiting period serves no purpose as far as weeding out cases,” Norwood said.

Existing federal law also made special health provisions for people with ALS and end-stage renal disease. Most people with disabilities must wait two years to be eligible for Medicare, but people with either of those two diseases can qualify sooner. ALS patients are eligible as soon as SSDI benefits start.

The new law could have made a big difference for Baron, who lives in Pikesville, Maryland. She and her husband, who works part time at a funeral parlor, didn’t have comprehensive health insurance when she got sick. They were enrolled only in a supplemental medical plan that paid out limited cash benefits.

By the time she was diagnosed and her SSDI and Medicare came through, Baron and her husband had maxed out their credit cards, raided $10,000 from their IRA and gone to their family for money. They were $13,000 in debt. They sold their house and moved into a condo to save on expenses.

“It is imperative that as [people] become more and more debilitated and cannot work, that they have immediate access to SSDI,” Baron said.

Like Sen. Lee, some patient advocates say the accommodations on disability benefits and Medicare made for patients with ALS should be extended to others with similarly intractable conditions.

The Social Security Administration has identified 242 conditions that meet the agency’s standards for qualifying for disability benefits and are fast-tracked for benefit approval.

Once approved, people with these conditions still must wait five months before they receive any money. Now, under the new law, people with ALS can skip the waiting period, though no one else on the “compassionate allowances” list can.

Breast cancer advocates are hoping for similar accommodations for people with metastatic breast cancer. Legislation introduced in the House and Senate in 2019 would have eliminated the SSDI waiting period for this group, but it did not pass.

Tackling the problem one condition at a time doesn’t make sense, others argue.

“Can you imagine, one by one, people with these conditions trying to find people in the House and in the Senate to champion the bill?” said Carol Harnett, president of the Council for Disability Awareness, which represents disability insurers.

Deb McQueen-Quinn has lived with ALS since 2009. It runs in her family, and she knows all too well the toll of the disease. Her sister was diagnosed in 2006 and died the following year, a week before she would have received her first Social Security Disability Insurance payment. (Cassandra Little)

Deb McQueen-Quinn thinks it would be good if the new law sets a precedent for eliminating the SSDI waiting period. At 55, McQueen-Quinn has lived with ALS since 2009, far longer than most.

A former convenience store manager, she uses a wheelchair full time now. She knows all too well the toll of the disease. ALS runs in her family, and she’s watched several family members, including her sister, brother and a cousin die of it.

Her sister, a former quality control engineer, was diagnosed in 2006 and died the following year, a week before she would have received her first SSDI payment.

McQueen-Quinn, who lives in Wellsville, New York, with her husband, has two children in their 30s. Her son, 33, carries the familial genetic mutation that leads to ALS. So far he hasn’t developed symptoms. But it’s for people like her son and other family members that she fought for the new law.

“Now that we’ve set the precedent, I’m sure you’ll see a lot of other diseases go after this,” she said.

Once Nursing Home Residents Get a covid Shot, Can Their Families Visit Them?

Latest Senior Health News

News Picture: If a Nursing Home Resident Gets a COVID Shot, Can Their Families Visit Them Now?By Dennis Thompson HealthDay Reporter

TUESDAY, Jan. 19, 2021

People in nursing homes have been suffering in isolation during the coronavirus pandemic, with their institutions in constant lockdown to prevent potentially fatal outbreaks.

Now that they’re some of the first in line to receive COVID-19 vaccinations, it would be natural for nursing home residents to expect that visits from friends and family will soon resume.

That might not happen, though.

Uneven vaccination rates and unknowns related to the vaccines could mean that folks in nursing homes will have to remain isolated for a while longer, experts said.

“It’s going to be a while before there are enough people immunized to really start to see a reduction in risk,” said Dr. Chris Beyrer, a professor of public health and human rights with the Johns Hopkins Bloomberg School of Public Health, in Baltimore. “There’s going to be this challenging period where we won’t have enough vaccine and we won’t have enough people immunized.”

There’s a reason for caution, and it’s the same reason why nursing home residents and workers gained a place in the first wave of vaccinations.

People in long-term care facilities have accounted for 40% of all COVID-19 deaths in the United States, even though they represent only 6% of overall infections, according to the U.S. Centers for Disease Control and Prevention.

In addition, nearly one in five nursing home residents who contract COVID-19 have died from the virus, a death rate much higher than that of the general population, according to the U.S. Centers for Medicare & Medicaid Services.

These assisted care facilities are full of people with conditions that put them at high risk of a life-threatening COVID-19 infection, Beyrer explained.

“And they’re so crowded together, and it’s indoors, and this is an indoor virus,” Beyrer added.

In a statement, the American Health Care Association/National Center for Assisted Living (AHCA/NCAL) said they are “extremely optimistic this vaccine will expedite the reopening of our facilities to family members and loved ones. We hope to be able to discuss what next steps look like once the second dose of the vaccine is being widely delivered and administered to staff and residents across the country. Nonetheless, all of us are going to have to remain vigilant, even after the vaccine.”

But the group added that questions remain regarding personal safety even among those who are vaccinated.

“Health experts have stated that the vaccine is safe and effective, but we do not yet know whether vaccinated individuals can still be carriers of the virus and infect others,” the AHCA/NCAL said. “We appreciate experts and health officials continuing to monitor the effectiveness of the vaccines, especially as new strains emerge, which will hopefully inform government guidance on how we can safely reopen our facilities.”

The problem is that the vaccines now available were given emergency use authorizations, and therefore facilities cannot mandate that either residents or staff take them, Beyrer explained.

“Remember that not everybody in the nursing home is going to be willing to be immunized. There will still likely be vulnerable people there, and that’s also true of the staff,” Beyrer said.

“It’s a mixed picture. We’ve seen some places where health care workers and providers have been very willing and eager and lining up to get the vaccine, and other settings where a significant proportion have not been willing,” he added.

Federal health experts have said 70% to 80% of people will need to be immune from COVID-19 before the population reaches a state of “herd immunity,” in which outbreaks cannot easily occur.

“That number is probably even higher in a nursing home,” Beyrer said, given the high risk created by a crowded indoor population of people with chronic illnesses.

Beyrer thinks it could still be months before nursing homes reopen for visitors.

“I would think that our best estimate is that there will be enough vaccine for every adult in this country who wants one sometime between June and July [2021]. The fall may be looking much better for people in terms of resuming visits and those kinds of activities,” Beyrer said.

More information

The U.S. Centers for Medicare & Medicaid Services has more about COVID-19 cases in nursing homes.

SOURCES: Chris Beyrer, MD, professor of public health and human rights, Johns Hopkins Bloomberg School of Public Health, Baltimore; American Health Care Association/National Center for Assisted Living, statement

MedicalNews
Copyright © 2020 HealthDay. All rights reserved.

With Vaccine Delivery Imminent, Nursing Homes Must Make a Strong Pitch to Residents

Imagine this: Your elderly mother, who has dementia, is in a nursing home and COVID-19 vaccines are due to arrive in a week or two.

You think she should be vaccinated, having heard the vaccine is effective in generating an immune response in older adults. Your brother disagrees. He worries that development of the vaccine was rushed and doesn’t want your mother to be among the first people to get it.

These kinds of conflicts are likely to arise as COVID vaccines are rolled out to long-term care facilities across the country.

“This is a highly politicized environment, not only with respect to vaccines but also over the existence of the virus itself,” said Michael Dark, a staff attorney with California Advocates for Nursing Home Reform. “It’s not hard to imagine disputes arising within families.”

About 3 million people — most of them elderly — live in nursing homes, assisted living centers and group homes, where more than 105,000 residents have died of COVID-19. They should be among the first Americans to receive vaccines, along with health care workers, according to recommendations from the Centers for Disease Control and Prevention and various state plans.

But long-term care residents’ participation in the fastest and most extensive vaccination effort in U.S. history is clouded by a significant complication: More than half have cognitive impairment or dementia.

This raises a number of questions. Will all older adults in long-term care understand the details of the vaccines and be able to consent to getting them? If individual consent isn’t possible, how will families and surrogate decision-makers get the information they need on a timely basis?

And what if surrogates don’t agree with the decision an elderly person has made and try to intervene?

“Imagine that the patient, who has some degree of cognitive impairment, says ‘yes’ to the vaccine but the surrogate says ‘no’ and tells the nursing home, ‘How dare you try to do this?” said Alta Charo, a professor of law and bioethics at the University of Wisconsin-Madison Law School.

Addressing these issues will occur against a backdrop of urgency. Deaths in long-term care facilities are rising dramatically, with new estimates suggesting that 19 residents die of COVID-19 every hour. With viral outbreaks increasing, already-overwhelmed staffers may not have much time to sit down with residents to answer questions or have conversations with families over the phone.

Meanwhile, CVS and Walgreens, the companies operating vaccine programs at most long-term care facilities, have aggressive timetables. Both companies have said the large-scale rollout of the Pfizer-BioNTech vaccine — the first one that the Food and Drug Administration has authorized — will begin on Dec. 21.But facilities in some states may get supplies earlier. Altogether, there are more than 15,000 nursing homes and nearly 29,000 assisted living residences in the U.S.

At a meeting of the federal Advisory Committee on Immunization Practices early this month, Dr. Nancy Messonnier, director of the CDC’s National Center for Immunization and Respiratory Diseases, acknowledged the agency was “very concerned” that information about vaccines be adequately explained to long-term care residents. “It’s very important for the frail elderly not only to ensure that they are understanding the vaccine that they’re getting but also that their family members do,” she said.

Each vaccine manufacturer will be required to prepare a fact sheet describing what’s known about benefits and risks associated with a vaccine, what’s not known, and making it clear that a vaccine has received “emergency use authorization” from the FDA — a conditional endorsement that falls short of full approval. A second vaccine, from Moderna, is poised to receive this kind of authorization after an FDA meeting on Thursday.

Something that will need to be made clear to residents: while vaccines have been tested on people age 65 and older, those tests did not include individuals living in long-term care, according to Dr. Sara Oliver, a CDC expert.

Some operators have crafted communication plans around the vaccines and already begun intensive outreach. Others may not be well prepared.

Juniper Communities operates 22 senior housing communities (a standalone nursing home, multiple memory care and assisted living facilities, and two continuing care retirement communities) in Colorado, New Jersey and Pennsylvania. This week, it is planning an hour-long town hall videoconferencing session for residents and families about coronavirus vaccines. Last week, it held a similar event for staffers.

Juniper has contracted with CVS, which is requiring that every resident and staff member fill out consent forms in triplicate before being inoculated. When written consent can’t be obtained directly, verbal consent, confirmed independently, may substitute. Walgreens has similar requirements.

For residents with memory impairment, two Juniper nurses will reach out by phone to whomever has decision-making authority. “One will ask questions and obtain verbal consent; the other will serve as a witness,” said Lynne Katzmann, Juniper’s founder and chief executive officer. Separately, emails, blog posts and prerecorded voice messages about the vaccines have gone out to Juniper residents and staffers, starting at the end of November.

A key message is “we’ve done this before, not at this scale, mind you, and not at this level of import, but we do flu vaccinations annually,” said Katzmann, who plans to be the first Juniper employee to get the Pfizer vaccine when it comes to New Jersey.

At Genesis Healthcare, crucial messages are “these vaccines have been studied thoroughly, tens of thousands of people have received them already, they’re very, very effective, and no steps have been skipped in the scientific process,” said Dr. Richard Feifer, executive vice president and chief medical officer. Genesis, the nation’s largest long-term care company, operates more than 380 nursing homes and assisted living residences in 26 states, with about 45,000 employees and more than 30,000 residents.

Medical directors at each Genesis facility have been scheduling video conferences with families, residents and staffers during the past few weeks to address concerns. They’ve also distributed a letter and a question-and-answer document prepared by the Society for Post-Acute and Long-Term Care Medicine, in addition to getting information out through closed-circuit TV channels and social media.

In partnership with Brown University researchers, the company will monitor daily the side effects that its long-term care residents experience after getting coronavirus vaccines. Most reactions are expected to be mild or moderate and resolve within a few days. They include fatigue, pain at the injection site, headaches, body aches, fever and, rarely, allergic responses.

Administering the vaccine will occur over three visits for all long-term care facilities. At the first, all Genesis residents and staffers will get inoculations. At the second, three to four weeks later, those same people will get a second dose, and new staffers and residents will get a first dose. At the third, those who still qualify for a second vaccine dose will get one.

What will happen if lots of people experience uncomfortable side effects and employees don’t come in for a couple of days while recovering? “It’s a very difficult problem and we’re making contingency plans to address it,” Feifer said.

And what about continuing care retirement communities — also known as “life plan communities” — where residents in skilled nursing, assisted living and independent living can reside in close proximity?

That’s the case at Bayview in Seattle, which houses 210 residents in a 10-story building. For the moment, independent living residents aren’t on the priority list but “I know there will be a contingent of residents and staff who won’t want to be vaccinated and we’ll see if we can use those vaccines for our independent living people instead,” said Joel Smith, Bayview’s health services administrator.

Logistical challenges are sure to arise, but many operators have an acute sense of mission. “It is critical that we lead the way out of this crisis,” Feifer of Genesis said. “Nursing homes need to go first and be the first ones to address vaccine hesitancy head-on and be successful at generating a high level of acceptance. There is no alternative, no Plan B right now. We have to be successful.”