The following two stories come from McKnights

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A curated selection of some the letters to the Times' editor

NY Times, July 24, 2021

To the Editor:

David Axelrod is not alone in his fear for his beloved daughter, nor in his gratitude to the disability community, nor his dread of dogmas that threaten to derail her life. Our daughter, 51 and multiply disabled, lived at home for 32 years but needed more than we, therapists and day programs could offer.

As we saw her enjoy the community, friendship, vitality and even a degree of independence at her home at the Center for Discovery (a place similar to Misericordia), we understood how lonely our home-based care had been for her. The pity is not that larger specialized residential settings exist; it is that too few have the qualities required to make them excellent homes for our children.

Well-staffed apartments or small neighborhood group homes are doubtless preferable for most disabled people. For those with intense and complex needs, however, the best and likely only way for them to have the good life they, no less than we, deserve is to live with peers in excellent and caring intentional communities. Policy that ignores them is simply discriminatory and not worthy of the ideal of inclusion for which disability advocates have so valiantly fought.

Eva Feder Kittay

White Lake, N.Y.

To the Editor:

David Axelrod and his daughter are immensely fortunate to have found a very special residential facility where she can thrive, surrounded by friends and engaged in meaningful activities, all while retaining full access to her community. Tragically, however, unlike the Axelrods, hundreds of thousands of autism families are facing a devastatingly bleak landscape with no viable options for adult housing.

While we support the Better Care Better Jobs Act for expanding federal funding for home- and community-based services for people with disabilities, we agree that the bill betrays a large segment of more severely disabled adults who require special facilities equipped to serve their complex needs. No amount of idealism can substitute for the cold hard fact that most require much greater support — and options exactly like those described by Mr. Axelrod.

Jill Escher

San Jose, Calif.

To the Editor:

I, too, am the parent of an adult daughter with disabilities. David Axelrod’s description of his daughter’s situation after high school is intimately familiar to me. There is no greater sadness for a parent than to see their beloved child sitting home alone day after day. There is also no greater responsibility than to know that, if not for you, your child would never have a social life and that someday you will not be there.

I was excited to hear about the living arrangement his family found for his daughter. Such a situation would be a godsend to my family. And I was angry to hear that there are those who believe they are “doing good” without asking the possible recipients of that purported good.

In New York State the usual wait time for community housing can be up to 10 years. I will continue to advocate for my daughter on my own and along with the agencies that currently support her. I will continue to contact my state and federal representatives. And I will continue to hope and pray that it’s enough.

Hilda Kapeles

Oakland Gardens, Queens

To the Editor:

Like David Axelrod, I, too, have a 40-year-old daughter with developmental disabilities. Being a retired special education professor, I know of what Mr. Axelrod speaks from both a professional and personal perspective.

Mr. Axelrod is correct in castigating the absurd dogma: “All larger communities are bad. All small, neighborhood-based group homes are good.” Unfortunately, the 1960s deinstitutionalization movement was not followed by enough federal and state dollars to ensure high-quality services in smaller group homes. Some are good, some are bad and some are in between.

Thankfully, after experiencing bad and in between residences, my daughter is now in a good group home. But what makes it good is not its size, but the expertise and dedication of the staff to provide for the individual needs of each resident. It is essential that families have options along a continuum of placements in order to meet the needs of individuals with disabilities. As is evidenced by these two 40-year-old adult children with developmental disabilities, one place definitely does not fit all.

Daniel P. Hallahan

Charlottesville, Va.

To the Editor:

David Axelrod’s essay about finding housing and an environment to meet the needs of his daughter who is disabled struck home like a bombshell. As two physicians with a 30-year-old daughter who has cerebral palsy, mostly confining her to an electric scooter, we thought we would be able to use our resources to find appropriate housing. We can’t.

She is verbally gifted but has problems with managing the business of life. She needs support and supervision, but not too much of either. A nursing home would be a cruel warehousing of an outgoing young woman who loves to sing and act and is finishing a degree in English and education at a local university. A small group home would not provide the exposure to the wide world she loves. There are myriad levels of disability that require funding for many different solutions. One size does not fit all.

Debra Grossman

Gregg Lipschik

Philadelphia

By Kimberly Marselas and Danielle Brown, McKnight's Long-Term Care News, July 20, 2021

Total coronavirus infections are being projected to skyrocket and peak in mid-October with an estimated 390,000 cases nationwide, according to a new national model projection. 

The latest projections were released late last week by the COVID-19 Scenario Modeling Hub, which is run by researchers working in consultation with the Centers for Disease Control and Prevention, NPR first reported. The model offers four scenarios based on how many people get vaccinated and how quickly the disease, particularly the Delta variant, spreads nationwide.

The United States is currently averaging about 62,000 new cases per day over the last week, according to the CDC.

Ruth Katz, LeadingAge’s senior vice president of public policy and advocacy, during a member call on Wednesday said the seven-day case average had quadrupled since June 26, “just as we thought we were moving out of the pandemic.”

“Here we are spinning again,” Katz says. “The next few weeks are going to call on all of us, especially aging services providers, to hold steady with all these skills we’ve sharpened together.”

Jill Schumann, also of LeadingAge, noted that the most probable scenario in the projections supplied to CDC, with an assumption that 70% of Americans are vaccinated and that the delta variant is 60% more transmissible, predicted a threshold of about 60,000 daily cases.

“That’s kind of close to where we are now,” Schumann said, but she also pointed out that other scenarios show trends spiking up to 240,000 new infections daily and 4,000 deaths daily in October. That would be “almost as bad as last winter,” Schumann noted.

“There are lots of factors that could impact the course of the pandemic,” she added. “One of those is how quickly unvaccinated people get the vaccine. … Clearly, we’re not out of the woods yet, so let’s keep encouraging vaccination.”

As of mid-July, only 56% of Americans 12 and older are fully vaccinated, and rates among nursing home workers are below that in many states.

By James M Berklan, McKnight's Long-Term Care News, July 26, 2021

LeadingAge joined a list of at least 56 other professional healthcare groups that came out Monday morning in favor of a COVID-19 vaccine mandate for all healthcare workers. 

The coordinated announcement was meant to capture the attention of the American public at a time when COVID infections are rising in every state.

It is sure to meet resistance from dissenters, as the country remains firmly divided with a significant minority of citizens and professionals hesitant or adamantly against receiving a COVID-19 vaccination, all of which are still authorized only under Emergency Use Authorization (EUA) status by federal authorities.

The coalition of associations and healthcare professionals groups, however, said it views vaccination as a medical ethical imperative backed up by overwhelmingly large statistical evidence of their safety and efficacy.

“We call for all healthcare and long-term care employers to require their employees to be vaccinated against COVID-19,” the joint statement declared.

“This is the logical fulfillment of the ethical commitment of all healthcare workers to put patients as well as residents of long-term care facilities first and take all steps necessary to ensure their health and well-being,” the statement continued.

The endorsement of a vaccination mandate is seen as a bold move, especially in long-term care, where critics say ongoing staffing shortages would be exacerbated if nurses and other workers decide to quit or stay away from work rather than become vaccinated. Recent reports show just 59% of the national nursing home workforce has received one or more vaccine shots, with the resident population sitting at 20 to 30 percentage points higher on average.

Roughly 35% of all U.S. COVID-19 deaths have been associated with long-term care settings, making them the single-most vulnerable place for infection and/or death since the pandemic was declared in March 2020.

VOR OPPOSES:

H.R.4131 & S.2210 - The Better Care Better Jobs Act - While this bill would greatly increase the amount of federal funding for people with I/DD, it only supports those in waiver programs receiving Home and Community Based Services. It unjustly discriminates against those who have chosen Intermediate Care Facilities as the necessary and proper form of residential treatment. By giving a 10% increase n federal matching funds only to HCBS clients, and providing training and increased pay only to direct support professionals working in HCBS facilities, the act deliberately favors one form of treatment over another, one ideology over another, and one set of people with I/DD over another.

H.R. 603 & S. 53 - The Raise the Wage Act - These bills are aimed at raising the minimum wage, but they also have provisions to phase out and ultimately eliminate vocational centers and 14 (c) wage certificates over the next six years and to immediately stop the issuing of any new certificates. VOR believes the issue of employment options for individuals with intellectual disabilities should not be buried in a bill for raising the federal minimum wage. Both issues deserve clean, stand-alone bills.

H.R.1880 - To amend the Deficit Reduction Act of 2005 to make permanent the Money Follows the Person Rebalancing Demonstration.

H.R. 2383 - The Transformation to Competitive Integrated Employment Act - this bill purports to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support individuals with disabilities through competitive integrated employment, to phase out the use of such special certificates. We feel that, if enacted, tens of thousands of people with I/DD and autism will still be forced out of opportunities they currently, needlessly, and left without viable alternatives to occupy their time or address their needs and their abilities.

VOR takes no position on whether or not the minimum wage should be raised to $15 per hour, or some other amount. We do, however, oppose any bills (see H.R. 603 & S. 53, above) that would remove vocational centers and 14(c) wage certificates.

For those who do support raising the minimum wage, there are currently two "clean" bills in the House that would raise the minimum wage without taking opportunities to work in a therapeutic environment through the use of 14(c) certificates. Those bills are H.R. 112, from Rep. Al Green (D-TX) and H.R. 325, from Rep. Steve Cohen (D-TN)

Additionally, Senator Tom Cotton (R-AR) has introduced a bill in the Senate, S 478, that would raise the minimum wage to $10 over a period of three years for some workers, without eliminating 14(c) wage certificates. The bill would also require the Department of Homeland Security to implement electronic verification to verify that prospective employees are legally authorized to work in the U.S.

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