July 27, 2021

Licensers, employers, and others have asked about my status: disabled or not disabled?  The first time I read this question in my new job’s onboarding forms, I was struck by the implied permanence and the dichotomy of the two choices.

Maggie Salinger who recently completed her internal medicine residency at Duke University and is now undertaking a Harvard Medical School Fellowship in General Medicine and Primary Care at Massachusetts General Hospital.  Medicine needs to see what disability means, looks like, and feels like — in its ranks and in its patients, STAT News, July 23, 2021, https://tinyurl.com/WhatDisabilityMeansLooksFeels

. . . 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.

Daniel P. Hallahan, professor emeritus of education at the University of Virginia, Where People with Disabilities Do Best, New York Times, July 25, 2021, https://tinyurl.com/WhereDisabilitiesDoBesr

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 and Gregg Lipschik, Where People with Disabilities Do Best, New York Times, July 25, 2021, https://tinyurl.com/WhereDisabilitiesDoBesr

“We all can make bad decisions at many points in our lives, but that doesn’t mean that we should have our rights taken away.”

Annette Swain, a Los Angeles psychologist who does neuropsychological assessments and says that because someone doesn’t always show good judgment, it doesn’t mean they lack capacity, Testing Britney Spears: Restoring Rights Can Be Rare and Difficult, New York Times, July 23, 2021, https://tinyurl.com/RestoringRightsRareDifficult

“Conservatorship and guardianship are like roach motels: you can check in, but you can’t check out.”

Kristin Booth Glen, a former New York State judge who oversaw guardianship cases and now works to reform the system, Testing Britney Spears: Restoring Rights Can Be Rare and Difficult, New York Times, July 23, 2021, https://tinyurl.com/RestoringRightsRareDifficult

Judge Glen once approved the termination of a guardianship of a young woman originally deemed to have the mental acuity of a 7-year-old. After three years of thoughtful interventions, the woman, since married and raising two children, had become able to participate fully in her life. She relied on a team for “supported decision making,” which Judge Glen called “a less restrictive alternate to the Draconian loss of liberty” of guardianship.

A supported decision-making approach has been hailed by the Uniform Law Commission, which drafts model statutes. It has said judges should seek “the least restrictive alternative” to conservatorship.

Testing Britney Spears: Restoring Rights Can Be Rare and Difficult, New York Times, July 23, 2021, https://tinyurl.com/RestoringRightsRareDifficult

“The capacity to process applications does not match the volume of need.”

Jim MacDonald, chief community investment officer at the United Way of Greater Kansas City

“ ‘We will see a historic wave of evictions and housing instability this summer and fall’ without further measures to protect tenants.”

Diane Yentel, president, and chief executive of the National Low Income Housing Coalition, End of Eviction Moratorium Puts Many Tenants at Risk of Losing Their Homes, Wall Street Journal, July 23, 2021, https://tinyurl.com/EndOfEvictionMoratorium

We call for all health care and long-term care employers to require their employees to be vaccinated against covid-19.  The health and safety of U.S. workers, families, communities, and the nation depends on it.

Joint statement of the American Medical Association, the American Nurses Association and 55 other groups, Doctors, nurses, and other health groups call for mandatory coronavirus vaccinations for health workers, Washington Post, July 26, 2021, https://tinyurl.com/CallMandatoryVaccinations

Three women reflect on being disabled in America on the 30th anniversary of the American with Disabilities Act  [3 women on being disabled in America, in their own words, Washington Post, July 23, 2021, https://tinyurl.com/3WomenDisabledInAmerica]

When I finally met blind role models who had similar backgrounds, it changed my life. . . I finally took pride in the fact that I was disabled.

Conchita Hernández Legorreta, a doctoral candidate in Washington, D.C. who immigrated to the United States with her family from Mexico one year after the passage of the ADA.

My walker has made my disability concrete, not just to others, but to myself. . . I feel worthy and strong, just the way I am.

Ruth Kogen Goodwin, a writer and editor from Southern California who has a condition called Postural Orthostatic Tachycardia Syndrome (POTS), a type of dysautonomia

Being a Black, disabled woman is a daily exercise in continuously defying the expectations of others — an emotionally exhausting feat. . . I believe in the validity of my existence and views.

Robin Wilson-Beattie, a Black disabled woman who is a disability and sexual and reproductive health educator and writer living in the San Francisco Bay area

Affordable senior housing properties are a powerful platform for the place-based service integration and coordination needed to enable holistic, person-centered care. The older adult population has specific features that favor investing in on-site services at housing properties, particularly if these investments can help older adults successfully age in the community and avoid institutional care. Given the current focus on investing in both housing and in home and community-based services, there is an immediate opportunity to shape these investments, so they are aligned to better support the needs of low-income older adults.

Policy Options for Integrating Health and Housing for Low-Income Older Adults, Center for Consumer Engagement in Health Innovation, July 2021,  https://tinyurl.com/INtegratingHealthHousing

Today, on the 31st Anniversary of the Americans with Disabilities Act (ADA), we celebrate the inclusion and access promoted by the landmark civil rights law for disabled Americans. Grounded in four core outcomes of full participation, equal opportunity, independent living, and economic self-sufficiency, the ADA prohibits discrimination on the basis of disability in contexts such as of public accommodation, employment, transportation, and community living and provides recourse for people with disabilities who faced discrimination.

Biden-Harris Administration Marks Anniversary of Americans with Disabilities Act and Announces Resources to Support Individuals with Long COVID, The White House, July 26, 2021, https://tinyurl.com/BidenHarrisMarksADAAnniversary

July 20, 2021

“My dad will go from being the coolest guy at a protest to the coolest guy in a wheelchair at a protest,’’ Chris Hoeh’s son said. “He’s just done amazing stuff. And whether he’s in a wheelchair or not, he’s going to keep doing that stuff.’’

Isaac Hoeh, Chris Hoeh’s son, as quoted in in a time of crisis, Chris Hoeh’s generosity comes full circle, Boston Globe, April 21, 2017, https://tinyurl.com/ChrisHOehsGenerosity

Live where you want. Choose who you live with. Earn money at a job you enjoy. Eat when you want. Choose how to spend your free time. Decide how you will spend your money.

30 Years of Community Living for Individuals with Intellectual and/or Developmental Disabilities (1987-2017), Administration on Community Living, https://tinyurl.com/30YearsCommunityLiving

Staff in skilled nursing facilities (SNFs) are essential health care workers, yet they can also be a source of COVID-19 transmission. . . Staff size, including staff members not involved in resident care, was strongly associated with SNFs’ COVID-19 outcomes, even after facility size was accounted for.

Larger Nursing Home Staff Size Linked to Higher Number Of COVID-19 Cases In 2020, Health Affairs, July 14, 2021, https://tinyurl.com/SizeLinkedToHigherNumber

Massachusetts and America need a professionalized care sector. These challenging times offer a perfect opportunity to provide one.

In the face of an eldercare crisis, Boston Globe, July 19, 2021, https://tinyurl.com/FaceEldercareCrisis

Ultimately, less-stringent zoning rules, better funding to recruit and train construction workers, and pro-housing policy will help prevent a large number of Americans from being permanently excluded from homeownership.

Here’s Who Will Be Left Behind in the Housing Boom, *New York Times, July 13, 2021, https://tinyurl.com/LeftBehindInHousingBoom

. . . he’s an Iraq war vet, two Purple Hearts. The second one is from an explosion which cost him both his legs and his left arm. And he’s also got PTSD. People call that kind of a hidden wound. But because he’s a triple amputee, people notice him, and then they see his military tattoos or bag.

Description of Matt Lammers, Iraq War Veteran, as related in A Disabled Veteran Tells His Story for National PTSD Awareness Day, Weekend Edition Sunday NPR, June 27, 2021, https://tinyurl.com/DisabledVeteranTellsStory

(T)his film [Best Summer Ever] is “part of a movement to highlight the talents of disabled actors and crew members who deserve a chance to work in the industry. Filmmaking is a crucial medium for raising awareness and promoting cultural enlightenment, and we hope a film like ours can be a steppingstone to continue these important conversations.”

Michael Parks Randa, Director, Best Summer Ever, https://tinyurl.com/IHCDBestSummerEver

The legislation fits in with a broader movement unfolding nationwide calling on officials to acknowledge historical injustices against marginalized groups and, in some cases, provide financial redress.

Referencing a proposal to provide reparations to surviving victims of the country’s largest mass sterilization program conducted under California law from 1909 to the 1970’s.  California once forcibly sterilized people by the thousands. Now the victims may get reparations. Washington Post, July 9, 2021, https://tinyurl.com/ForciblySterilzed

July 13, 2021

Some dominant local and regional nonprofits, including Mass General Brigham, based in Boston, and Avera, based in Sioux Falls, S.D., billed the uninsured at their general hospitals some of their highest prices while also setting some of the most restrictive financial-aid policies for free care nationwide.

Hospitals Often Charge Uninsured People the Highest Prices, Wall Street Journal, July 6, 2021, https://tinyurl.com/HospitalsOftenChargeUnisured   

“She’s not getting better, is she?” her daughter asked. As gently as I could, I explained that despite our best efforts, she was not.  Her daughter started to cry as she realized that there would be no Hail Mary save, no reason to wait until Monday. There would be no miracle, but perhaps there would be peace. It was time to say goodbye.

Reflections of Dr. Daniela Lamas, a pulmonary and critical-care physician at Brigham and Women’s Hospital, What Should Doctors Do When We Experience a Miracle? New York Times, July 2, 2021, https://tinyurl.com/ExpewrienceAMiracle

I almost died nine months ago — not from cancer, which I have and which my doctors tell me I will not survive — but from malnutrition, a side effect of cancer treatment.

Tracy Kennard, Cancer Took Away My Ability to Eat, but Not My Love of Food, New York Times, July 9, 2021, https://tinyurl.com/NotMyLoveForFood

The article “For this centenarian’s dilemma, a 21st-century answer” illustrates what every person who has an elderly or disabled relative has known for years, and what Dignity Alliance Massachusetts has been working to rectify: Most of us want to remain in our homes and communities, and unless you impoverish yourself, paying for needed care is impossible.

The current Medicare and Medicaid system is biased toward institutional care, underwriting a $240 billion nursing facility industry, the majority of which are for-profit companies. Most nursing facility residents do not need costly 24-hour skilled care but rather require the assistance of personal care aides, housekeeping, and meals, which can be provided in their home for much less money.

The additional home- and community-based funding available through the American Rescue Plan provides Massachusetts with an extraordinary opportunity to transform our system of long-term care and strengthen our delivery of services and supports to allow individuals to live independently in their homes and communities. These changes must be accompanied by reforms to financial eligibility requirements to allow individuals to live independently in the community with the supports they need without becoming impoverished.

Meg Coffin, CEO, Center for Living & Working Inc., Letter to the Editor. Boston Globe, July 12, 2021, https://tinyurl.com/ShouldntHaveToJumpThroughHoops

Change is beginning to happen in wages for low-wage  workers,  but  until  all  nursing  home  workers’  wages  are  raised to (at least) living  wages and until all workers receive health benefits and paid time off, the Government will  continue  to  subsidize  nursing  homes  by  billions  of  dollars  by  providing needs-based public  benefits  and  earned  income  tax  credits  to  the  nursing  home  industry’s  low-paid  workers.   The  nursing  home  industry  is  a heavily taxpayer-subsidized  industry.

Nursing Home Industry is Heavily Taxpayer-Subsidized, Center for Medicare Advocacy, July 2021, https://tinyurl.com/HeavilyTaxpayerSubsidized

You have to look at history as a far more complex phenomenon than the sort of generational divide that is really artificial as framing right now.

So, why are we pitting a generation against each other, when, in fact, all they’re basically doing is pointing a finger at baby boomers for a few bad mistakes that took place during those years, not recognizing how society has transformed since the 1950s in fundamental, deep, institutional, personal, interpersonal ways?

Leonard Steinhorn, Professor, American University, quoted in Baby boomers on their role in social change and how luck affected their prosperity, PBS News Hour, July 8, 2021,  https://tinyurl.com/BabyBoomersSocialChange

July 6, 2021

Juliet Bernstein, who turned 108 on Friday, has lived in her Cape Cod house for a half-century since she retired as a New York City teacher. Her mind is sharp, but she is physically frail and needs nearly round-the-clock care.

Bernstein cannot walk without pain, no longer cooks, and depends on home health aides to bathe, dress, and use the bathroom. But like many elderly people, she is determined to spend the final years of her long life in the modest home she loves.

At 108 years old, Cape Cod woman starts fund-raiser to allow her to keep living at home, Boston Globe, July 2, 2021 (updated), https://tinyurl.com/108YearsOld

“A sea monster ate it,” he growls.

“Huh? What?” Alberto gasps.

Massimo relaxes into a laugh. “Ma, no. This is how I came into the world.”

Massimo Marcovaldo, featured character in the animated film, Luca, explaining the reason for the absence of his right arm.  In ‘Luca,’ a Character’s Disability Doesn’t Define Him, New York Times, July 2, 2021 https://tinyurl.com/LucaDisabilityDoesntDefine

Instead of judging by size, isn’t the right path to fully fund an array of high-quality options and afford people like Lauren the dignity of choice and the happiness they deserve?

David Axelrod, When It Comes to People Like My Daughter, One Size Does Not Fit All, New York Times, July 4, 2021, https://tinyurl.com/OeSizeDoesntFitAll

. . .  ignoring the overlap between ageism and ableism reinforces a dual stigma. Consider people who make comments like, “I may need help getting around, but at least I’m not in a wheelchair!” Or, “I may be disabled, but at least I’m not old.”  An ageist and ableist culture gives companies an excuse to look the other way and do nothing. And doing nothing perpetuates stereotypes and bias that have the potential to hurt every employee.

Why Ageism and Ableism Should Be Front and Center in Diversity, Equity and Inclusion Strategy, Forbes, June 27, 2021, https://tinyurl.com/AgeismAndAbleismStrategy

With a single melancholic click, I’d change the status from “Alive” to “Deceased.” And it was this mundane act that always brought on the tears.

Danielle Ofri, a primary care physician, describing the personal impact on her of patient deaths as she completes death certificates of persons who died due to COVID-19, in My ‘postmortem’ folder and the intensely personal nature of the latest Covid-19 surge, STAT, May 12, 2021, https://tinyurl.com/PostmortemFolder