Showing posts with label LTC ombudsman. Show all posts
Showing posts with label LTC ombudsman. Show all posts

Friday, April 30, 2021

Infrastructure

in·fra·struc·ture  (ĭn′frə-strŭk′chər) noun

1. An underlying base or foundation especially for an organization or system.

2. The basic facilities, services, and installations needed for the functioning of a community or society, such as transportation and communications systems, water and power lines, and public institutions including schools, post offices, and prisons.

https://www.thefreedictionary.com/infrastructure

Care infrastructure

Woo-hoo! So refreshing to learn care is included as infrastructure because care (aka “domestic work” often performed by women, unpaid/underpaid) has to get done before any other work can get done! Inspired by women, President Biden’s American Jobs Plan proposes to invest $400 billion over eight years in care infrastructure

#CareCantWaitCoalition launched $20 million campaign to push Congress to invest in care infrastructure, notably the following to care for aging adults: 

·       Invest $450 billion in Medicaid home and community-based services (HCBS) to create over one million high-quality, union protected direct care jobs, expanding HCBS to people with disabilities and aging adults, and supporting unpaid family caregivers who rejoin labor force.

·       Pass Paid Family and Medical Leave legislation to ensure all working people have access to at least 12 weeks of paid leave to address a personal or family related illness.

Aging and tax expert Howard Gleckman wants Biden to be more ambitious in pushing for a public long-term care (LTC) social insurance plan because millions of middle-income Americans are not poor enough to qualify for Medicaid yet cannot afford paid LTC.  Check out Rethinking Care for Older Adults

As part of nursing home care reform, state governments have proposed legislation to increase minimum staffing levels in nursing homes, and surprisingly, investors are demanding that for-profit nursing home operators improve staff working conditions and quality of care (increase staffing levels, boost pay, offer pandemic hazard pay and sick leave, allow staff to unionize, improve safety). 

Last month, Pivotal Ventures named Building Women's Equality through Strengthening the Care Infrastructure, led by several members of #CareCantWait Coalition, as one of ten finalists for Equality Can’t Wait Challenge. 

At Care Can’t Wait Summit, Time’s Up CEO Tina Tchen presented It’s Time to Care: The Economic Case for Investing in a Care Infrastructure (Feb. 2021).  During COVID-19 pandemic between Feb. 2020 and Feb. 2021, over 2.3 million women (compared to 1.8 million men) dropped out of the labor force, mostly due to caregiving responsibilities—wiping out a generation of economic gains; over half of these women affected were Black (600,000+) and Latina (618,000+).  

Building on American Rescue Plan and American Jobs Plan, Biden administration announced American Families Plan, the third COVID-19 recovery package released this week that proposes comprehensive family and medical leave, and extension of tax credits to lower and middle-income workers and their families in American Rescue Plan.

In a capitalist system, care is valued if monetized so many family caregivers aren’t “counted” and thus remain mostly invisible.  AARP hosted screening + discussion of Sky Blossom: Diaries of the Next Greatest Generation (2020), a documentary giving visibility to millennials who provide (unpaid) care for military veteran parents or grandparents.  Sky Blossom’s millennial caregivers included 18-year-old Kaleo and 26-year-old Kamaile, brother and sister in Kauai, prioritizing care of 80-year-old grandpa Bobby, a former Marine who developed dementia; they explain their culture of kuleana (responsibility) for “grandpa is the last we have,” after their mother died by suicide, and “school is always there” as they postpone their own plans for college and gain hands-on adulting.  AARP released companion Financial Workbook for Veteran and Military Family Caregivers: A Practical Guide Focused on Health, Housing, and Money Management (2021). 

Sky Blossom Director Richard Lui became Gen X caregiver/frequent flier, adjusting his MSNBC anchor work schedule so he could commute from NY to SF to help care for his father, a retired social worker diagnosed with Alzheimer’s disease eight years ago.  Richard’s caregiving experience then became a seven-year “selfless” exploration and genesis for his new book, Enough about Me: The Unexpected Power of Selflessness (Mar. 2021). 

Last month’s PBS documentary, Fast-Forward, followed four pairs of millennials and their boomer parents as they go through “aging boot camp” (wearing MIT-produced “aging empathy suit,” which was more like “disabling empathy suit”) that challenges them to confront changes at age 70+ (mostly physical limitations that can be socially isolating).  In this simulation, changes are abrupt, while in real life changes are gradual so we can adapt and plan for greater interdependence. 

To its credit, Next Avenue developed companion seven-day email course + digital toolkit (Assemble Your Team, Share Your Plan, Complete an Advance Directive) that considered solo agers without available family caregivers. Yet, wondered why isn’t more attention paid to so-called elder orphans/solo agers? This has been my Old Maid Project, as I want to focus on older women who are more likely to live alone than men.  

During virtual Careers in Aging Week, Susan Ryan, Senior Director of The Green House Project and host of Elevate Eldercare podcast, presented keynote Catching the Wave of Opportunity.  She shared her own career trajectory from nursing home nurse to LTC reformer after she learned about culture change/The Green House Project. 

In addition to data driving decisions in longevity economy where “demographics demand disruption,” (111 million American consumers age 50+ generate $7.6 trillion in economic activity; Karen Sands’ Gray is the New Green: Rock Your Revenues in the New Longevity Economy), COVID-19 pandemic has put aging services in the spotlight—not just about keeping infection away, but relationships matter, empower workers, wellness is biophilic, etc.

The Green House Project founder Dr. Bill Thomas is pushing deinstitutionalization further with his new Canopy model, a “middle market” offering designed to make “better homes and better communities” to bring nursing home care to people living in their own homes with access to outdoors (more in Politico article, “Will the Nursing Home of the Future be an Actual Home?”). 

Internet infrastructure

Biden’s American Jobs Plan proposes $100 billion to bring affordable internet (aka “electricity of the 21st century”) to all Americans by 2029! Digital equity took on greater importance during COVID-19, especially among older adults staying safer at home and relying on internet access for telehealth, social connection, news and health information, ordering essentials, scheduling vaccine appointments, etc. SF Age & Disability Friendly Implementation Workgroup heard from consultant Cecile Puretz about Thriving in Place-Empowered SF Technology Access Survey in progress (digital in six languages, phone, print, ASL vlog, braille). 

Meeting closed with farewell to Shireen McSpadden who is leaving SF Department of Disability and Aging Services after five years as its Executive Director to lead beleaguered SF Department of Homelessness and Supportive Housing, where she intends to bring an aging and disability lens to her new position.  More housing designed to accommodate people with disabilities, please! 

Education infrastructure:  City College, Lifelong Learning, Mills College

Educate to liberate: Lessons in community mural at City College of SF-John Adams Campus

Biden’s American Families Plan proposes $109 billion to make two years of community college free.  Since 2017, City College of SF has been tuition free to SF residents, regardless of financial need… however, now it faces proposed budget cuts jeopardizing programs that benefit many older adults such as English as Second Language (ESL) and nursing. (Last year, SF Dignity Fund and non-profits stepped in to restore Older Adult classes that were cut from City College of SF’s budget.) 

At Save City College of SF Town Hall, Senior & Disability Action (SDA) joined Gray Panthers and other advocates to protest proposed cuts to faculty and classes at City College of SF.  SDA Executive Director Jessica Lehman demonstrated how to leave a brief voice-mail message with SF Supervisors (who continue to work remotely during pandemic) and ask them to vote yes on expanding the Workforce Education Recovery Fund (WERF) to prevent massive cuts to City College of SF, which trains essential workers like nurses, paramedics, fire fighters, construction managers, plumbers, etc.

SDA member Angie Bagares shared that she supports City College of SF because it gave her an opportunity to return to school at age 58 to train as licensed vocational nurse (LVN) and graduate at age 63 with a new career—and she experienced no age discrimination.  She has encouraged people working in fast food industry to consider nursing, computer and self-defense classes at City College, as well as ballroom and Latin dancing.  Angie has given back by teaching dance at senior centers and performing at community events.   

Ten years ago, I enrolled at City College of SF to take up “hobby” classes in environmental horticulture, public health (taught by Vicki Legion, who co-authored new book, Free City! The Fight for San Francisco's City College and Education for All) and nutrition (including internship with SF Department of Aging & Adult Services!)—and this led to my return to graduate school and then giving back via my encore career in gerontology, including lots of volunteer advocacy work to promote aging in place and LTC reform!

Ken Stern, Chair of Longevity Project hosted After COVID-19 - The Future of Lifelong Learning & Workforce Development: What Should Congress Do? In pre-recorded keynote, Congresswoman Lori Trahan talked about Protecting Older Workers Against Discrimination Act (POWADA) and expanding national apprenticeships. 

Maria Flynn, President and CEO of Jobs For the Future, Inc. (JFF), called for federal support to develop information infrastructure or universal career navigation services for workers in today’s evolving labor market.  Of the 10 million jobs lost last year, up to 40% of these jobs may never come back, so displaced workers need access to information to make informed choices about their education and career pathways as they train for new opportunities. 

Chip Conley, author of Wisdom@Work: The Making of a Modern Elder (2018), talked about wisdom worker correlated with age and emotional intelligence to create psychological safety in the workplace; and half of American colleges will go out of business in ten years (as predicted by late Harvard Business Professor Clayton Christensen, and pandemic’s online learning may have accelerated this trend?), so need to repurpose campus for lifelong learning and integrate all ages. 

At Mills College Town Hall, President Beth Hillman explained reasoning behind last month’s decision to transition from College to Institute, including “deferred maintenance costs.”  As gerontologist, I wondered why Mills has not prioritized ADA required accessibility needed to attract students of diverse physical abilities? (I previously communicated my concerns when I brought LTC residents for an outing to campus Art Museum with stairs only to access back gallery; visitors unable to use stairs viewed exhibition catalogue instead.)   

Last year, I suggested that Mills join Age-Friendly University Global Network as a way of boosting enrollment and age diversity in campus life (15% of Mills students are age 23+).  Strengths: age included in diversity statement; faculty with gerontology expertise (e.g., Psychology Professors Christie Chung on memory and aging and Dean Morier on aging attitudes); lifelong learning with Alumnae Association of Mills College (AAMC) (though travel programs suspended during COVID-19 pandemic), etc.  However, the historic 135-acre campus needs to improve physical accessibility.

Forbes suggested that “Being ‘Woke’ Means Going Broke for Mills College,” which read like how higher education has turned into “coddling of the American mind” (i.e., pursuit of “social justice” over “truth,” loss of viewpoint diversity, thinking “pathologically” in terms of privilege/oppression binary with emphasis on gender/sexual orientation and race/ethnic identities, etc.).  Mills’ 36% tuition reduction in Fall 2018 was major contributor to going broke and arguably lowered prestige by appearing desperate (especially without accompanying recruitment efforts involving enthusiastic alumnae speaking to value of women-centered, liberal arts education).  I submit that being woke should consider longevity dividend/age-inclusivity by welcoming more older adults to campus to study for encore careers and/or lifelong learning! 

“Women’s colleges have traditionally reached out to populations that were excluded from other colleges.  Initially they catered primarily to well-off young women who were excluded from the institutions that only men could attend.  Today we’re seeing that it’s often first-generation and underserved students who are excluded, and these students are being drawn to and welcomed by women’s colleges.”—Linda Cohen Turner (Mills ’68), President of The College Choice, “Evolve or Die,” Mills Quarterly (Summer 2015) 

Love Zoom bookcase behind Alexa Pagonas (Mills ’91), attorney/talent manager from Beverly Hills, who asked whether Mills College Board of Trustees considered all options before extinguishing “Fires of Wisdom” (Mills anthem). 

Few weeks later, AAMC Town Hall was held to discuss options. Save Mills College Coalition retained law firm to request that California Attorney General, newly appointed Rob Bonta (former adjunct policy professor at Mills!) investigate Board of Trustees’ unlawful action to close Mills.  Attorney Julia Almanzan (Mills ’92) from Los Angeles went further in presenting UC Mills option: University of California (UC) system gets another campus without having to build it! Mills campus has historic human-scale buildings designed by Julia Morgan, stunning botanical landscape (famously photographed by Ansel Adams), but really need to improve ADA accessibility! UC Mills appears to be viable option, as this fall Mills will begin hosting 200 first-year UC Berkeley Changemaker in Oakland students of all genders (an announcement that displeased some).  

Lori Bass (Mills ’92) was on target when she said Mills is about amplifying marginalized voices! This was largely the reason why Mills was my dream college, inspired by Jade Snow Wong (JSW, 1922-2006) who wrote about her Mills experience (as transfer student after two years at SF Junior College/City College of SF) in Fifth Chinese Daughter (1950, Harper & Brothers; 1976 video for public TV) …long before Maxine Hong Kingston (The Woman Warrior, 1976) and Amy Tan (The Joy Luck Club, 1989) published stories about their Chinese immigrant family experiences.  As a daughter of Chinese immigrants, so powerful to read JSW striving to assert her independence and explore the larger world, via Mills liberal arts education with international student body.  I especially got a kick learning that JSW majored in economics and sociology with intention to become a social worker in SF Chinatown, but discovered her passion in a ceramics class taught by F. Carlton Ball.

At times, JSW appeared like The Chinese Lady, recruited by Mills President Aurelia Henry Reinhardt who “had a lifelong interest in the Oriental people” (p. 147), and befriended by Mills classmates who “were perpetually curious about her Chinese background” (p. 161).  After her Mills graduation and wartime office employment, JSW began her business making exquisite pottery in a storefront window in SF Chinatown, popular with Caucasians but considered a “mud-stirring maiden” spectacle by fellow Chinese.  Yet these experiences served her well as after publication of her first memoir at age 27, she embarked on a speaking tour throughout Asia at the invitation of U.S. State Department, and made several visits to People’s Republic of China—described in her follow-up memoir, No Chinese Stranger (1975, Harper & Row).  As JSW became a renowned ceramist and author, she also ran her namesake travel agency with her hubby and raised four children (including two daughters who are Bent Twigs aka Mills legacy).

After I arrived as an awestruck student at Mills, I excitedly contacted Constance Wong Ong (Mills ‘42), as JSW’s name appeared on Mills alumnae records, to invite her to speak on campus. And just like JSW, I used my Chinese privilege to write papers about my immigrant family, which were well-received by one English professor who encouraged me to write more and publish, but my family was too traumatized by Communist persecution so I was forbidden (silenced).  During my last semester at Mills, I enjoyed my “spring fling” internship at Harper & Row (publishers of JSW’s books!); afterwards, I studied abroad in China and Hong Kong, and made several return visits.  Fast-forward, I now facilitate amplifying voices of marginalized older adults!

Mills undergraduate senior Lila Goehring said she left Ohio as a "mild-mannered Midwestern girl" to attend Mills, where she learned that her voice matters and to take up space. While volunteering at reunion in 2019, an alum told students that they were “going to dream about this place” (Mills) for the rest of their lives.  Lila reflected on this: “you were once me and I will be one of you in 24 days, but we have to make sure that future students get to dream about his place, too.  So I urge the trustees, remember what Mills taught…” in the immortal words of former Mills Math Professor and Dean Hettie Belle Ege (1861-1942), “Remember who you are, and what you represent.”

If Mills is to continue as a degree-granting college, it needs to restore admissions staff and Alumnae Admissions Representative program outreaching to potential students of all ages. (Intergenerational activism goes beyond a teen who pays $350 for two-bedroom “senior citizen apartment” where she enjoys hanging out with her neighbors age 65+, listening to their stories and eating their home-cooked meals.) 

David Bernstein, PhD, chair of Music Department and Faculty Executive Committee, joined Mills faculty in 1989.  During his first year at Mills, he “didn’t really understand what was going on” with the 1990 student and alum protest to reverse trustees’ decision to admit men in undergraduate program (Mills graduate programs are co-ed), but then came to “understand how wonderful women’s education is” and encouraged us to gather that same momentum (many 1990 strikers resumed their activism with Save Mills Coalition/UC Mills) and “faculty would be totally behind you.” Ah, like music to the ears!

Professor Bernstein (not “Dr.” as Jill Biden, EdD calls herself) is concerned about protecting endowment that has enabled Mills Music Department to prosper with international recognition, and feels for students who are dedicated to learning at Mills.  He called out “corporate machine” that’s running (or did he say ruining?) Mills with no intellectual breadth or appreciation for the incredible legacy of Mills; with no shared governance, faculty is feeling very disenfranchised by the administration but certainly not giving up—“there’s a lot of fight in us”! He said faculty members are worried about their jobs, but as he’s further on in his career, he’s more concerned about younger colleagues finding another job during this challenging time in higher education. (Listen to Mills’ musical legacy online.) 

Gerontocracy thriller

Chris Mann does geriatric moonwalk in Ben Stiller Thriller (Parody) 

Seems like Biden is doing moonwalk: moving forward with “once-in-a-generation" investment in massive infrastructure proposal, harkening to FDR’s first 100 days to set foundation for using government to rebuild economy from ground up. 

“…a funny thing happened on the way to the old folks home, Biden…is now spearheading the most transformative administration since FDR…he got better at 78. What a mind-blowing concept that must be to the younger generation, for whom writing someone off simply because of their age is the last acceptable prejudice…

America, you’re not that young anymore…it’s time you grew up…Biden is the right man for this moment because he is old.  Been there, done that: It’s a virtue.  He’s getting things done…”—Bill Maher, “The Able Guy” (Apr. 23, 2021) 

After Justice RBG’s death at age 87 last year, Justice Stephen Breyer succeeded as oldest living Supreme Court Justice and now he is facing pressure to retire at age 82 by some Democrats who want Biden to nominate Black woman (presumably younger and liberal) to U.S. Supreme Court.  Representation of older working justices needed on Court to raise insightful questions when deciding age discrimination cases like Babb v. Wilkie.  

Virtual Hawaii

Hawaii Executive Office on Aging Director Caroline Cadirao discussed serving the needs of Hawaii’s older adults: of 1.4 million residents in Hawaii, 25% are age 60+, 87% live with one or more chronic conditions, 12% require LTC.  Nearly 12% of Hawaii households are multigenerational—source of instrumental support to age in place?

Kupuna Care services assist “frail and vulnerable older adults” to age in place. 


Last month, AARP Hawaii hosted Think of Your Future Saturday series that included consideration of LTC costs in Hawaii.  

Hawaii LTC Ombudsman (LTCO) John McDermott presented on LTC Options in Hawaii, and what to do now:

·       Make sure your doctor knows you well

·       Make your home “age friendly”

·       Prepare for the worst – tour facilities, important documents & finances in order, conversations with family, no surprises

·       Keep up with community resources

In Hawaii, there are 1,727 LTC facilities providing 12,876 beds; since COVID-19 pandemic, the number of residents occupying these beds declined due to deaths and residents moving out by family members deciding to provide care at home. 

John mentioned checking out CMS nursing home compare ratings, but they are unreliable

John’s LTCO team is responsible for making quarterly visits, investigating and resolving complaints relating to care and rights of residents in LTC facilities.  His LTCO staff consists of himself, volunteer coordinator, Oahu specialist, and part-time contracted specialists for each island county (Maui, Kauai, Hilo, Kona)—falling short of minimum staff recommendation by National Institute on Medicine, so he urged us to call Governor’s Office for funding and/or become LTCO volunteer. 

After this presentation, Hawaii Department of Health ordered Oceanside ALF on Oahu to close by today, after revoking its license due to finding of neglect by Adult Protective Services (instead of LTCO); ALF owner appealed so operations continue and will allow time for residents to find alternative housing. 

California Department of Public Health has a horrible record of allowing nursing home operators to operate while license applications are pending for many years (e.g., Brius Healthcare) and while appealing license denials (e.g., ReNew Health Group). 

Alzheimer’s diagnosis

From this month’s American Association for Geriatric Psychiatry (AAGP) webinar, Behavioral and Psychological Symptoms of Dementia: Update on Treatments, Mechanisms and Management in the Clinic and Community—Only about the half of people with Alzheimer’s disease (AD) are diagnosed, with disclosure to only 45% of caregivers and 33% of those with the disease. 

Among Medicare beneficiaries, Blacks, Latinx and Asians are less likely than whites to receive timely diagnosis of AD—possibly related to less comprehensive screenings and underrepresentation in clinical trials, so individuals and caregivers need to advocate for themselves. 

In "Neurologist Faces His Alzheimer Diagnosis Determined to Lessen Stigma Surrounding the Disease" (Apr. 28, 2021), JAMA interviewed retired neurologist Daniel Gibbs, MD, PhD (more schooling=greater cognitive reserve!) about his diagnosis of AD five years ago at age 64, and his “coming out” to reduce stigma so people can accept and deal with it openly: starting to lose his sense of smell 15 years ago was the first clue, followed by a DNA test that revealed he had two copies of APOE4 allele that put him at risk for developing AD.  When he started practicing neurology in 1989, "nothing could be done" for AD so he would avoid making a diagnosis until as late as possible.  

With scientific understanding of lifestyle modifications (aerobic exercise, MIND diet, social engagement, new learning, 7.5 hours of sleep, etc.) to minimize risk factors or slow progression of AD, Dr. Gibbs became a “zealot” for early detection of AD when interventions could help.  As a neurologist, he has been able to study his disease, which has been a coping mechanism, to intellectualize changes in his brain. During this process, he has participated in clinical trials, hopeful that discoveries of treatment or cure will benefit his children’s generation.  Look forward to learning more of his unique perspectives as neurologist + patient in his new book, A Tattoo on my Brain: A Neurologist's Personal Battle against Alzheimer's Disease (May 2021)! 

Elder abuse

Association for Gerontology Education in Social Work (AGESW) President and Wayne State Social Work Professor Tam Perry hosted Speaking Out against Anti-Asian Racism and Violence against Older Adults webinar, which was dedicated to UCLA Public Health Professor Steven P. Wallace, who co-sponsored event as Resource Centers for Minority Aging Research (RCMAR) Director but unexpectedly died two days before event. (He was noted for developing California Elder Economic Security Standard Index, which more closely measures actual cost of basic necessities of older adults, and used in California’s Master Plan on Aging!) Only age 63 at the time of his death, he did not live long enough for Social Security and Medicare benefits.

Hunter College Social Work Professor Keith Chan offered Solutions as Gerontological Social Workers…very academic, unlike controversial SF social worker/mayoral candidate Ellen Lee Zhou (SFSU MSW alum) who promoted gun ownership, police patrols and more security cameras in response to violent attacks on SF Chinese in 2019 (pre-pandemic).  As a practitioner serving older adults, I suggested follow-up program to amplify voices of older adults impacted by anti-Asian racism/violence and their perspectives on public safety solutions.

Recently, as four individuals stole from “elderly Asian” couple on their home’s front porch, their son responded by wielding machete and chased suspects who ran into getaway car in Oakland, caught on video. 

Follow-up news reports suggested unhoused people made “random” attacks on older Asians in SF, NYC, and Riverside—so careful not to conflate violence against people who are Asians with hate crimes (that require proof of intent)? Yet, could this pattern suggest “copycat” cases (to get media attention?), caught on videos in broad daylight, picking on “easy targets” who happen to be older Asians, mostly women who are smaller in size than attackers, limited English proficiency, less likely to report crimes to law enforcement, etc.

SF Board of Supervisors committed to work on action plan to prevent anti-Asian crimes by end of May. 

Reopening

Dining outdoors in parklets is cool, but SF “shared spaces” should not allow chairs to obstruct sidewalks for pedestrians including those using walkers/wheelchairs.  Dry weather allows for outdoor dining, but no April showers to bring May flowers …

Founders Sing “Just got my vaccination” (Parody, Apr. 16, 2021) 

Saturday, November 30, 2019

Care partners

“When you give something, you’re in much greater control.  But when you receive something, you’re so vulnerable.” – Fred Rogers to Jeanne Marie Laskas, “The Mister Rogers No One Saw,” The New York Times (Nov. 21, 2019)

At this month’s Gerontological Society of America’s Annual Scientific Meeting, the term “care partner” seemed to be used more often, replacing caregiver.  While a caregiver is one who gives care to a recipient who needs assistance, a care partner describes both parties in a caring partnership with shared goals, opportunities to both give (control) and receive (vulnerability).  Care partner also reflects more dynamic roles in person-centered and partnership-centered models of care. 
“Person-centered care involves engaging with people as equal partners in promoting and maintaining their health and assessing their experiences throughout the health system, including communication, trust, respect, and preferences.” –Primary Health Care Performance Initiative 

Partnership-centered care goes beyond person-centered care by promoting a culture of collegiality:
“(Partnership-centred care) approach promotes collaboration between all those involved in an older person’s care. It recognises the values of interdependence and reciprocity, and aims to maximise the wellbeing and dignity of all by creating a positive environment that draws on the best evidence-based practice available.”—Caring for Older People: A Partnership Model, Centre for Innovation and Education in Aged Care (CIEAC), Deakin University 
Caregiver Action Network (CAN), a non-profit organization advocating for more than 90 million Americans who care for loved ones of all ages, selected the annual theme for National Family Caregivers Month, #BeCareCurious: about your loved one’s goals, treatment options, research, the care plan, and insurance coverage.
Language matters because words have meanings that shape culture, attitudes and behavior.  Yet reframing care takes time as there was no rebranding of National Family Caregivers Month to Family Care Partners Month?
As a follow-up to September’s Care Agenda: Expanding CA’s Long-Term Services and Supports (LTSS) for All Town Hall meeting, California Aging and Disability Alliance is circulating a petition for a new social insurance program to help Californians afford LTSS needed to live and age with dignity in our communities. 
According to this month's AARP report, Valuing the Invaluable, the availability of family “caregivers” is unlikely to keep pace with future demand: in 2026, baby boomers begin to turn age 80—when people are most at risk of needing long-term care (LTC); yet the U.S. population aged 45-64, “peak caregiving” years, will increase by only 1% between 2010 and 2030, while the age 80+ population likely to need LTC will increase by a staggering 79%!  
House Ways and Means Committee held a hearing, Caring for Aging Americans, that included powerful testimony from a family “caregiver” faced with raising $84,000 to pay for her mother’s home healthcare, or dropping out of her last year at Yale medical school to provide this care.  Proposed solutions included universal LTC, increased reimbursement rates for nursing homes, stronger enforcement to prevent elder abuse, expanding access to hospice care, addressing LTC access in rural areas, developing workforce, paid family leave, etc.
At Institute on Aging (IOA), Jenny Yen, PsyD, Director of Training for Integrated Behavioral Health, presented on De-escalation Techniques and Strategies.  In her work consulting IOA staff in addressing challenging client behaviors due to dementia and psychiatric issues, she emphasized the need to view and understand people and their behaviors with compassion (=reduce suffering), increase empathy and strengthen relationships.  We all experience suffering (e.g., loneliness, fear, anxiety, stress, unmet need, being misunderstood, underappreciated, etc.) and want to be respected, so approach the person with suffering with a view to help, not punish. 
This training made me reflect on my work in the Tenderloin serving marginalized and diverse older adults, observing conflicts arising from control issues relating to personal space (lack thereof in densely populated congregate places like senior centers and SROs), mental illness (loss of control in anxiety/trauma, confusion in psychosis, trust and safety violations in personality disorders, not knowing how to express complex feelings in grief and loss), cognitive disorders (impulsive, forgetful expressions), and impact of cumulative disadvantages (poverty, discrimination).  Her tips included:
·       Compassionate listening: ask what is their suffering, what is trigger? Be present, give complete attention (no multi-tasking), convey you are following discussion, avoid problem-solving (unless they ask?), be open-minded and curious (no judgment), listen for suffering and triggers (work to remove triggers, create sense of safety), reflect/validate (e.g., “Sounds like you’re going through a tough time.  Tell me more.  What helps you when you are stressed?”)
·       Redirect attention: ask/use “we” language to change topic/activity/environment (be ally, “let’s do together”); offer choices to regain control & opportunity to grow/learn (integrate person’s strengths)
At JCCSF’s 5th Annual Embracing the Journey End of Life Resource Fair, Dr. Shelly Garone presented two talks on Palliative Care: 
·       The Art of Taking Care of Our Dying Loved Ones – Finding Peace Within Knowledge: where would you prefer to die (90% of Californians want to die at home, only 25% actually do); how would you choose to die (“sudden death” in sleep for 10-15% Americans, cancer 20-25%, organ system failure 20-25%, dementia/frailty 40%); physical & emotional aspects of dying (disengagement from prior joys-life smaller, loss of appetite, onset of skinniness, increasing sleep; delirium, chorea, pain, air hunger/shortness of breath, own un-ease & un-readiness); timing (out of doctor’s control, loved one choose moment most protective, ears last to turn off so say everything want to say)
·       Taking Care of Caregivers – Finding Hope Despite Grief: keep notebook (jot to-do tasks, clinical notes); delegate; get informed; don’t lose your health; take breaks (nobody likes to be watched while they sleep, some too private to die with others present); our bodies die, this doesn’t mean that life is worthless.
SF Supervisor Hillary Ronen delivered keynote at Redefining Crazy: It’s the System, not the People conference hosted by Mental Health Association of San Francisco.  She introduced her proposal for universal Mental Health SF, which emphasizes voluntary engagement and addresses current gaps in “coordinated, managed care fashion”:
·       24/7 service centers (similar to Behavioral Health Access)
·       office of coordinated care (real-time inventory of beds, high quality data, regular/intensive/critical levels of case management with standardized supervision)
·       crisis intervention street team (similar to Mobile Crisis)
·       expansion of services (more beds, cooperative homes)
·       office of private insurance accountability to advocate for access to anyone insured
·       use $400 million budget for behavioral health more wisely, plus additional $100 million funding via taxes.
She explained her proposal evolved from trying to address the homeless crisis, especially after homeless from Super Bowl City near Embarcadero Plaza were cleared to the Mission in 2016, so she fought for a Navigation Center that reduced the number of tents from 260 to 30 in her district.  She declared the major causes of homelessness were economic inequality and displacement, compounded for people with mental illness and substance use disorders; 38% of people discharged from Psychiatric Emergency Services were not connected with follow-up services, due to lack of communication among agencies operating in silos or lack of high quality data regarding availability of beds; and her rejection of SB 1045 housing conservatorship, which targets homeless people with dual diagnosis, whose presence on the streets of San Francisco have increased visibility.  (A week after her keynote, Mental Health SF was revised to limit its scope in a compromise with SF Mayor.)  
Susie DuBois, MFT, presented on the development of a drop-in support group for Family & Friends of People with Hoarding & Collecting Behaviors.  Five years ago, SF Department of Aging & Adult Services provided funding to start support group, which evolved from 6 weeks in 2015 to 14 weeks.  There is a two-hour orientation session for new members; each two-hour session includes 1st hour didactic on topic in lecture/discussion, 2nd hour open group sharing & support.  About 5 to 14 participants attend, ranging from age 19 to 75.  The model curriculum includes: 
·       Family and Personal Vulnerabilities: genetic predisposition, executive function deficits; trauma, scarcity, loss; learned about possessions, acquiring, anti-organizing; lack of skill how to discard, maintain; mental health issues
·       Relationship Issues: communication; high conflict/passivity/avoid conflicts (couple); co-dependence/control; lack of connection; power imbalance; blame & responsibility; standoff
·       In-Home Issues: turf wars; loss of control; conflict; clutter-blindness; mutual avoidance/standoff
·       Community and Social Issues: shame & embarrassment; isolation; lack social norms; difficult find support; neighbor & landlord conflict; involving social services; secret keeping
·       Accommodations: OCD scale/symptom severity
Lunch & Learn Q&A with Esme Weijun Wang, author of The New York Times bestselling essay collection, The Collected Schizophrenias (2019).  She discussed the mental health stigma of “schizophrenia terrifies” due to psychosis that results in later discharge from hospitals.  In contrast, people with anxiety, depression or eating disorders are reframed (almost mainstreamed) as having “attention to details” and “empathic concern.”  Schizophrenia is commonly diagnosed during young adulthood, and colleges find it difficult to deal with mental health issues.  As a Yale student struggling with mental illness, she was hospitalized against her will.  She talked about the loss of dignity in involuntary hospital stays, which resembled prisons; her need to access outdoors and fresh air.  Her self-care/wellness plan includes medications, therapy, journaling, dressing well to restore dignity, support system, and "wonderful dog."
Human rights advocate Kirsten Irgens-Moller left SFSU’s MSW program over 30 years ago to co-found Global Exchange and serve as its Executive Director, then returned to complete her MSW degree in 2015, with a field placement that turned into employment at Ombudsman Services of San Mateo County (OSSMC)! OSSMC advocates for the rights of 10,000 residents in LTC facilities in San Mateo, accomplishing 5,000 unannounced visits in the past year.  When Kirsten interviews field ombudsman candidates, she asks “why do you like old people?”  The responses often relate to experiences with a grandparent and love of stories/wisdom.
Senior & Disability Action’s Housing Collaborative celebrated victory of Proposition A, which funds $600 million for affordable housing bond, including $150 million for senior housing! SDA members called 2,500 senior voters to support Proposition A, which passed with 71% of votes.  Gen Fujioka, Policy Director at Chinatown Community Development Corporation (CCDC), which houses 2,379 seniors age 65+, representing 53% of its low-income residents, talked about Senior Operating Subsidy (SOS), need to increase senior housing (currently representing only 12% of housing pipeline) and for public oversight of Mayor’s Office of Housing. 

Jen Low, legislative aide to Board of Supervisors President Norman Yee, talked about plan to construct a 200-unit affordable continuum of care campus at Laguna Honda: senior independent housing, assisted living, and an intergenerational early childcare education center with adult day health center.  She also spoke of need for data to organize for transparency and accountability, such as a comprehensive needs assessment, income levels, wait list for BMR housing, etc.