During the coronavirus pandemic, Shantonia Jackson, a certified nursing assistant at a nursing home in Cicero, Illinois, worked through Covid-19 outbreaks in which more than 250 residents tested positive for the virus, and one of her co-workers and friends passed away along with several residents.
Jackson described working 16-hour days, seven days a week, as dozens of employees were often out sick or in quarantine. Caring for 70 residents at once, she still made time for those she cared for to use her cellphone to make video calls to loved ones they were no longer able to see. Adequate personal protective equipment was a constant issue and concern. At home, Jackson quarantined herself from the rest of her family, only interacting with her daughter through video calls even though they live in the same house.
In November 2020, Jackson and her co-workers went on strike for 12 days during new contract negotiations between management and her union, SEIU, for better pay and improved working conditions.
It took until March 2021 for Jackson, her co-workers, and residents to begin receiving vaccines.
“This industry is broken. Nobody cares about the elderly any more,” said Jackson. “We need to improve the way people perceive home care and nursing home work. There needs to be a big reform, and not letting it be about numbers and greed, not worrying about the head count a facility can get, it should be about proper care.”
April is Autism Acceptance Month. It’s a good time to rethink not only how non-autistic or “neurotypical” people can best support autistic people –– but also how non-disabled people in general can do better in supporting people with any kind of mental, developmental, or physical disability. There’s no shortage of good intentions. Most people if asked would say that they at least want to do right by people with disabilities. But being a good disability ally requires more than goodwill.
Still, as more people learn about disability issues, it’s important to be alert for ways that disability allies can lose their way. The following are three of the most common ways that even the best, most committed disability allies can go wrong.
1. Listening to disability awareness seminars instead of disabled people.
2. Assuming you have a new and essential idea, without first finding out if it’s either new or essential.
If you’ve watched one film about malpractice in nursing homes this year, odds are it’s “I Care a Lot,” a slick black comedy starring Rosamund Pike as an unscrupulous lawyer defrauding seniors. “I Care a Lot” is a pulpy thrill ride that earned Pike a Golden Globe, but the nursing home film that really deserves more attention, and might just take home an Oscar this weekend, is “The Mole Agent.”
One could be forgiven for not having heard about a Chilean documentary filmed in a nursing home, but it’s become something of a phenomenon based on its 2020 premiere at the Sundance Film Festival, after which Indiewire called it “the most heartwarming spy movie ever made.” It picked up nominations for the Independent Spirit Awards, Goya Awards and was named to the National Board of Review’s list of top five foreign language films, then was broadcast on PBS in January before coming to Hulu (and for rent on Amazon Prime Video). And it’s got a good chance at winning the 2021 Academy Award for best documentary.
Directed by Maite Alberdi (“The Grown-Ups”), the film opens with an older man named Sergio replying to a quizzical newspaper job listing.
Overall, people prioritized survival and improving their quality of life and placed less priority on completely stopping all drug and alcohol use. As a result of treatment and recovery services they also want to reduce harmful substance use, improve mental health, be able to meet their basic needs, increase self-confidence, and connect to ongoing services. To address the national epidemic of substance use disorders, we need to focus on achieving these priority outcomes, while also tailoring services to meet individual needs.Our study also found differences in priority outcomes across race and gender. To achieve these outcomes and address the continuing criminalization of addiction, especially among Black and brown communities, we need to improve cultural effectiveness of services and address systemic racism. We encourage you to share these findings with your networks and incorporate our recommendations, detailed in the report, into your advocacy. The more we can research and invest in a holistic system of treatment and recovery supports for substances use disorders, the more individuals will be able to achieve the outcomes important to them, and thrive in their recovery.
According to a 2015 report, approximately 43.5 million informal (unpaid) caregivers provided care to an adult or child in the previous 12 months.
Additionally, while individuals with disabilities of any age may need assistance from caregivers, older people are more likely to develop disabilities, and more likely to require personal assistance and support. The population of people over the age of 65 is projected to increase significantly in the coming decades, likely resulting in a greater need for caregivers, both paid and unpaid.
How is the ADA relevant to caregivers and individuals with disabilities who need their assistance and support?
State and local government agencies (called “public entities”) and private businesses like stores, restaurants, movie theaters, amusements parks, etc. (called “places of public accommodation”) need to do a number of things to make sure people with disabilities can access goods and services, including:
Provide aids and services to communicate effectively with individuals who have hearing, vision, or speech disabilities (e.g., read labels or tags aloud, describe items, provide materials in large print, Braille, or electronic formats for individuals who are blind or have low vision; exchange written notes, provide assistive listening devices, sign language interpreters, or captioning services for individuals who are deaf or hard of hearing);
Make “reasonable modifications in policies, practices, or procedures” to ensure equal opportunities.
This means public entities or businesses may need to do things a little differently or adjust rules, on an individual, case-by-case basis, so that a person with a disability can access services or participate in programs. This may include accommodating a caregiver who is providing assistance to a person with a disability.
This fact sheet addresses some of the most frequently asked questions about the ADA and caregivers.
Are businesses required to provide a personal assistant or caregiver for a person with a disability?
Generally, no. Businesses and public entities are not required to provide services of a “personal nature,” such as assistance with eating, toileting, or dressing, although facilities that generally provide such services (e.g., hospitals or child care centers for very young children), must provide services equitably to individuals with disabilities.
However, there are many “reasonable modifications” that may be needed on an individual basis and would not be considered “personal services.” For example:
A medical office may need to complete a medical form on behalf of a patient who cannot hold a pen or pencil,
A restaurant kitchen may be asked to cut food into smaller pieces before serving, or
An employee at a grocery store may need to assist a person with low vision to find products.
Do caregivers and personal assistants get free admission?
Two new KFF analyses find that lowering the age of Medicare eligibility from 65 to 60 could significantly reduce health spending for employers, who could potentially pass savings to employees in the form of lower premiums or higher wages.
Additionally, per person health spending for older adults who move from employer coverage on to Medicare would likely be lower, though such moves would shift costs to taxpayers and increase Medicare program expenditures overall.
President Biden proposed lowering the age of Medicare eligibility to 60 during the presidential campaign, with the goal of broadening coverage and making health coverage affordable for older adults.
To illustrate the potential for employer savings, one analysis shows that lowering the age of Medicare eligibility to 60 could reduce costs for employer health plans by as much as 15 percent if all eligible employees shifted from employer plans to Medicare. Similarly, costs for employer plans could drop by as much as 30 percent if all people age 55 and over were no longer in employer-sponsored insurance, the analysis finds, and by up to 43 percent if everyone 50 and older chose to enroll in Medicare. The actual impact on health spending for employers would depend on how many older workers shifted from employer coverage to Medicare.
The savings in employer plans would come from employers covering fewer older adults, who tend to have higher health care spending than younger enrollees.
A second analysis by KFF experts shows how 60- to 64-year-olds who move from employer plans to Medicare could be covered more cheaply because Medicare payments to hospitals, physicians and other health care providers are generally lower than what private insurance pays.
An Open Letter to the Biden Administration and Congress about Ensuring the Freedom of Individuals with Disabilities
American Disabled for Attendant Programs Today – ADAPT – was founded by the Reverend Wade Blank, Michael Smith and other young people who escaped a Denver nursing facility with his assistance. From its inception, our group has fought for the freedom and integration of people with disabilities. The last three decades of our work were devoted to ending unwanted institutionalization. During that time, we have learned that the institutional bias is not based in a single line of the Medicaid statute. Instead, it is a myriad of seemingly innocuous, but ableist policies that – together – have forced countless Disabled individuals into unwanted institutionalization.
For the last two Congresses, we have worked to pass the Disability Integration Act (DIA). DIA is a civil rights bill, modeled on the Americans with Disabilities Act, that would ensure individuals with disabilities who could be institutionalized are afforded the opportunity to receive Long Term Services and Supports (LTSS) in the community. The bill was crafted by Disabled individuals working with Senator Schumer. When the 116th Congress ended, the bill had 238 cosponsors in the House and 38 cosponsors in the Senate. The bill had clear bipartisan support with 20 Republicans cosponsoring the bill.
Earlier this year, several members of Congress released language for the HCBS Access Act (HCBSAA). HCBSAA would establish HCBS as a mandatory Medicaid service and fund these services entirely by the federal government. It addresses the long-standing bias in the Medicaid program where nursing facilities and institutionalization are considered a mandatory service and community-based services are optional.
The first purpose listed in the bill is “to fulfill the purposes of Americans with Disabilities Act to ensure people with disabilities and older adults live in the most integrated setting”. We applaud Congress and the Biden Administration for taking steps to address this critical issue. We believe that a more robust version of the bill language can be incorporated into the Biden administration’s infrastructure bill and lay the groundwork for us to secure passage of the Disability Integration Act.
The Disability Community has been asked to comment on the proposed language of the HCBSAA. To effectively comment on the HCBSAA language and identify how the HCBSAA can be strengthened, ADAPT is analyzing how both bills address the various ways Disabled individuals are forced into unwanted institutionalization.
Eiryn Griest Schwartzman spent years fighting for academic accommodations at their Maryland college with little success, but the coronavirus pandemic changed everything: In-person classes became virtual, with closed-captioning features, making it possible for them to follow what was going on in class.
“That’s been a game changer for me,” said Griest Schwartzman, 23, who uses they/them pronouns. “… Now I actually have the ability to understand material that I couldn’t get before.”
However, now that the world is looking towards “the new normal”‘ Griest Schwartzman and other people with disabilities are worried that accommodations that became standard in 2020 will not be available. Remote classes and work have opened doors for many, and virtual activities and gatherings expanded social bubbles even as many stayed home.
The Sentinel Project will use specially trained staff to examine long-term care facilities for evidence of abuse or neglect through unannounced visits, which will be determined by performance metrics, complaints and other data.