Sustain-Ability at PacRim Conference on Disability & Diversity

As a gerontologist advocating for community living, I look to disability culture and laws to promote access and inclusion for people of all ages and abilities.  Last month, the Leadership Conference on Civil and Human Rights issued its support of the Disability Integration Act: 

“Community integration of people with disabilities is a deeply important civil rights issue. The Disability Integration Act builds upon the historic Americans with Disabilities Act, and the promise of the U.S. Supreme Court decision in Olmstead v. L.C. It would provide people with disabilities with the real choice and opportunity of living and participating in the community without discrimination through the strengthened use of long term services and support through an increased commitment of federal funds for those services. We urge Congress to enact this vital legislation as soon as possible.”

The annual Pacific Rim International Conference on Disability & Diversity, held in Honolulu, is one of my favorite learning, advocacy and networking destinations.  The conference programming “walked the talk” in presenting disability as diversity, as well as legal, human and civil rights issues. This month I returned to volunteer at this empowering conference, now in its 33rd year and organized by the University of Hawaii’s Center on Disability Studies (CDS) around the theme SustainAbility.  Some welcomed changes this year:

• Fall event (during Sharktober!) instead of springtime

 

• Much closer to conference co-venue Hilton Hawaiian Village in Waikiki, The Modern Honolulu replaced Hawaii Convention Center as co-venue for first two days of the conference.

• Instead of my usual walking from my parents’ home to the conference sites, I took advantage of TheBus’ new (effective October 1) 1-day pass at $5 for unlimited rides all day!  
• This year’s conference included the first-ever Book Pavilion (Monday and Tuesday) and all-day Aging with Dignity Forum (Wednesday), which were accessible to the general public for $20 and $15, respectively.  As conference volunteer, I received complimentary registration (including meals) and behind-the-scenes access to presenters and staff!

Aloha!

Over 600 people registered in advance, and nearly 1,000 people showed up when the conference began on October 9 (aka Discoverers’ Day in Hawaii since 1988) with a sumptuous breakfast buffet of local favorites (papaya, pineapple, fried rice, veggie scrambled eggs, Portuguese sausage, and guava nectar) at Hawaiian Village.

(Hawaii’s local food system was self-contained until tourism exploded in Hawaii during the 1970s.  Today, Hawaii exports 80% of its food production, and imports 90% of its food consumption.  During last year’s World Conservation Congress held in Hawaii Convention Center, Hawaii Governor David Ige pledged to double local food production as part of Sustainable Hawaii Initiative.)

CDS Director Patricia Morrissey shared stage with ASL interpreter, presenting Opening Remarks.  She asked that we take-away 3 things from our attendance: learn strategies that we can apply to our life for happiness and satisfaction, make new friendships that blossom in collaboration, and find the true interconnectedness of all things.

Conference organizer Charmaine Crockett joked that she didn’t have anything inspiring to say, but housekeeping that included conference highlights like planned outdoor film screening on beach (swimming pool)!  

Sara Banks presented E Ola Pono Campaign, a statewide initiative to promote peace and pono (righteousness) in Hawaii schools. 

Entertainment by Hawaiian singer-songwriter Amy Hanaiali’i, who is known for reviving the Hawaiian tradition of female falsetto singing and performing duet of John Lennon’s “Imagine” before Hawaii Governor Neil Abercrombie signed 2013 Hawaii Marriage Equality Act into law. 

While stationed as room monitor on 2^nd floor of The Modern Honolulu, some attendees explained they had difficulty finding direction of meeting rooms because this wallpaper appeared like “zebra” print to them.  Actually, tropical leaves were hand-painted on this wallpaper.

Books

In What’s Your Story? A Masterclass on Memoir, Jessica Fechtor talked about her best-selling memoir, Stir: My Broken Brain and the Meals that Brought me Home (2015). 

Wow! Charmaine distributed copies of Stir, courtesy of Jessica’s publisher, to attendees! 

James Doty, MD, Director of the Center for Compassion and Altruism Research and Education (CCARE) at Stanford University School of Medicine, shared his life story in Building a Culture of Empathy and Compassion, based on his New York Times best-seller, Into the Magic Shop: A Neurosurgeon’s Quest to Discover the Mysteries of the Brain and the Secrets of the Heart (2016).  Despite his adverse childhood experiences (poverty, alcoholic father, depressed and suicidal mother, etc.), his life changed at age 12 when a kind earth mother in a magic shop taught him techniques on how to relax and breathe, and tame his mind.  He later learned that real happiness is connection, caring and compassion.  Instead of tribalism that creates the “other,” we need to see similarities and give dignity to all so we recognize “other” as “you.”

Amy Coleman, MD, presented on Be Your Best Self: How Your Symptoms Can Be Both a Mask and a Set of Clues, and then gifted signed copies of her book, Discovering Your Own Doctor Within (2016).  She suggested self-care strategies like being in the moment, connecting with nature, deep breathing, prayer, etc.

Exhibitor Benetech Senior Education Program Manager Christine Jones demonstrated Bookshare, which provides online access to books on a wide variety of software apps, tablets, smartphones, assistive technology devices, etc.  Last month, Bay Area-based Benetech partnered with California State Library to make over 565,000 ebooks available free to patrons who “read differently” (i.e., cannot read printed books due to a disability, such as dyslexia, blindness, low vision, or certain mobility impairments).  

Nina G, Bay Area-based stuttering comedian with Comedians with Disabilities Act and dyslexic writer of Once Upon an Accommodation: A Book about Learning Disabilities (2013), was interviewed by Matthew Mock in Standup Comedy and Disability: Art, Social Activism, or Pure Nonsense (or maybe a bit of all three!).  Nina G pointed out that the late actress Marilyn Monroe developed her breathy voice to hide her stuttering.  But Nina G decided to develop her own voice when she started stand-up comedy, billing herself as America's only stuttering female comedian, and became a disability activist in the process. 

Entertainment, Food & Posters

Mihana Aluli Souza provided entertainment during 5^th annual evening poster session and party. 

175 pound whole pig from nose-to-tail was soaked in brine for 3 days, then roasted for 4 hours. 

Poster on Disaster Preparedness for People with Disabilities and their Caregivers

Morning poster session breakfast buffet at Modern Honolulu

Film Fest

My favorites from Mini Diversity Film Fest were documentaries. 

  
Filmmaker Bradley Jackson and Film Fest curator Laura Blum engaged in Q & A with audience after sneak preview of Dealt, a documentary about 62-year-old Richard Turner, one of the world’s top card magicians who is completely blind due to macular dystrophy.  Bradley spent 3-1/2 years with his subject to create a thoroughly engrossing 85-minute film.  Because Richard did not want to be treated differently, he refused to learn Braille or use a white cane, and he never revealed his visual impairment to the public. He was determined to be recognized for his accomplishments on merit, always exerting himself in tactile activities like practicing with cards 16 hours a day and earning a black belt in karate.  Richard had the support of his wife, who disclosed that she sometimes felt like his seeing-eye dog, and his son Asa Spades, who worked as his assistant.  Spoiler alert: After Asa left home for college, and as Richard mentored a girl who is blind, Richard no longer kept his blindness a secret and connected with his sister who showed him how to use assistive technology and a service dog.

(Incidentally, since 2016, Hawaii was the first state in the nation to mandate accommodations for the hearing and visually impaired at movie theaters. More recently, the U.S. Third Circuit Court decided that movie theaters must accommodate deaf-blind patrons with special interpreters, like tactile ASL interpreters.)

  

On World Mental Health Day, the Film Fest featured Wider Film Project’s God Knows Where I Am —a poignant documentary based on the diary of Linda Bishop, who struggled with schizophrenia and periods of homelessness, isolating herself in an abandoned farmhouse where she ultimately died of “starvation with dehydration associated with psychiatric illness,” at age 52. The documentary was effective in showing Linda’s perspective for viewers to respond with empathy, and I was disturbed how often the “safety net” of hospital, psychiatrists and family tried to force Linda to take psychiatric medications, as though other treatment options (without disabling side effects) were not offered. 

Given the intensity of this film, there was no scheduled discussion afterwards.  I was curious to learn more, so I read Rachel Aviv’s The New Yorker article, “God knows where I am: What should happen when patients reject their diagnosis?”  

“Implicit in the doctrine of informed consent is the notion that before agreeing to take medication patients should be aware of the nature and course of their own illnesses. In balancing rights against needs, though, psychiatry is stuck in a kind of moral impasse. It is the only field in which refusal of treatment is commonly viewed as a manifestation of illness rather than as an authentic wish. “

“But you can’t exercise free will when the mind is not free,” said filmmaker Todd Wider, who is also a surgeon.

Dementia 

Janet Gibson, PhD, presented Power of Art: Power of Us Talking Out Otherwise Dementia, about the need for dementia stories that go beyond symptoms of disease (loss of selfhood) to celebrate the creativity from dementia, as suggested by Kate Swaffer (former nurse turned activist after being diagnosed with younger onset frontotemporal dementia) and Maureen Matthews’ To Whom I May Concern (interactive theater program designed to give voice to people with dementia and understanding to the people around them).  Check out Janet’s blog about performance of age and dementia in everyday life, at https://stageing.wordpress.com/.

In Dementia Blog: Writing about Illness, UH English Professor Susan Schultz, PhD, read excerpts from her two books based on her blogging about her mother’s dementia. She described conversations with her mother like speaking ESL, and Alzheimer’s experience as a second childhood. 

Diversity, Empathy & Built Environment

 

ADA compliance consultant and trainer Nanette Odell, PhD, facilitated Solving the Diversity Puzzle.  Attendees put together colorful jigsaw pieces to form letters spelling out D-I-V-E-R-S-I-T-Y.

Emile Bruneau, PhD, of the University of Pennsylvania’s Peace and Conflict Neuroscience Lab presented on Neuroscience of Empathy. 

Dorothy Riddle, PhD, of Hidden Mobility Disabilities (Canada) with presenters David Matthews of CCS Disability Action (New Zealand) and David Leake, PhD, of UH on the Built Environment. 

• Matthews spoke about the role of community development and advocacy to create environments that work for everyone by addressing the barriers, such as commitment (signatory to UN Convention on Rights of People with Disabilities), legislation/regulation (building act and code stuck with minimum standards, need to incentivize to go beyond), cost and general attitudes (more about affordability v. accessibility, complacency and/or complicity), etc. He noted that Singapore, also a signatory to UNCRPD, had clear regulations on accessibility for built environment.   
• Leake talked about visitability, which was repeated during Aging with Dignity Forum the next day.

Aging with Dignity Forum

All-day Aging with Dignity Forum emphasized home and community-based programs.  

Scott Spallina, who heads the Honolulu Office of the Prosecuting Attorney’s Elder Abuse Justice Unit, presented on Elder Abuse through the Victim’s Eyes: Why these Crimes Leave Seniors Devastated and Why Elders are Targeted.  He is on-call 24/7 to provide rapid response, and supported by 4 deputy attorneys, 2 staff and 2 interns. 

In Honolulu, the most common form of elder abuse is financial exploitation, and #1 abuser is family.  Abuse is seldom reported due to embarrassment—victimized parents turn the other cheek to keep peace in the family. Seniors are targeted because they have more assets (controlling more than 70% of nation’s wealth), viewed as often lonely, and thought of as trusting. 

• Warning signs: isolating victim, secrecy, urgency, emergency/tragedy, loneliness, too good to be true. 
• Prevention tips: never give personal information to stranger, screen calls, lock mailboxes/shred mail, estate planning. 

Older Adults with Disabilities: Interests, Needs and Concerns Aisha Bonner-Cozad of AARP presented on Opinions and Experiences of Family Caregivers who have a Disability and Older Adults with Disabilities: Behaviors that Increase the Risk of Becoming an Internet Fraud Victim 

Cassandra Cantave of AARP presented on Age-Friendly Communities for All, concluding with following areas of opportunity: separate pathways for bicyclists and pedestrians, sidewalks in good condition and accessible for assistive mobility devices, well-maintained streets, enforced speed limits, well-maintained and safe low-income housing, affordable housing options, activities that are affordable to all residents, and activities specifically geared towards older adults.

AARP Hawaii State Director Barbara Kim Stanton talked about AARP Hawaii's work in advocacy (protect Social Security, Medicare, pensions, kupuna care, age-friendly), education (research), and community events.  She provided Hawaii data on topics presented by AARP national presenters:

• Retirement security:  Due to Hawaii’s high cost of living, Barbara said her accountant advised her to work 2 more years before retiring, and Hawaii has highest number of women in workforce; 93% of Hawaii employers are small businesses and many do not offer retirement plans due to administrative burden, so AARP advocating for Work & Save via payroll deduction to help workers save for retirement.  (See "Americans are retiring later, dying sooner and sicker in-between.")
• Women’s financial security:  Average caregiver is age 60 and female with less earnings, less Social Security; AARP Hawaii offers Women & Money class, encourages bringing daughter and lets “men sneak in.”
• Long-term care: Hawaii has highest need, not enough beds; people are out sicker and quicker, more medical tasks like wound care, catheter care, transferring "dead weight"; effective July 1, 2017, Hawaii CARE Act requires discharge instructions to caregiver at home.
• Caregiving support: Caregivers say caregiving was the most special time, no regrets but own life put on hold, hardest to care for people with Alzheimer’s; AARP Hawaii’s annual Caregiver Conference attended by 1,000 yet there is wait list, often lifeline to sandwich caregivers who request transportation and personal care (bathing, hygiene) assistance.
• Safer streets: Hawaii has nation’s worst infrastructure and senior pedestrian fatality rate; AARP Hawaii has been working to get countdown traffic lights at 14 deadliest crosswalks.  (This month, Honolulu became the first in the nation to allow police to fine pedestrians up to $35 for viewing electronic devices while crossing the streets —a measure, inspired by teenagers' concerns about their peers, that has been criticized for blaming the victim for pedestrian deaths.)
• Age in place: AARP Home Fit Guide and Age-friendly Honolulu.

Barbara mentioned that AARP Hawaii funded 2 Community Challenge grants for Kind2Kupuna (to develop a public awareness campaign that includes a list of 10 tips to help businesses better serve older adults) and Age-Friendly Honolulu (Iolani elementary students developed age-friendly Chinatown virtual reality 360 video and an interactive exhibit at the Children and Youth Day on October 1, aka UN International Day of Older Persons).  

According to AARP, Hawaii ranks 7^th (and California ranks 9^th) in the nation for LTC services.  After this 2017 scorecard was published, Hawaii passed Kupuna Caregiver Assistance Act, effective July 2017, granting assistance to working family caregivers, who can be caring for family members who are above the Medicaid eligibility threshold.  In doing so, Hawaii was first in the nation to offer $70 per day to caregivers who also work full-time.   

On my own for lunch, so hopped on TheBus to Ala Moana Shopping Center Food Court for Yummy Korean vegetable plate at $10.99!

The Built Environment for All:  Charting the Course for Age-Friendly Communities 

Christy Nishita, PhD, of UH Center on Aging, provided overview of Honolulu’s Age-Friendly Initiative.  By 2030, 24% of Hawaii residents will be 65 (versus 21% in rest of U.S.), and Hawaii has longest healthy life expectancy (65-year-old Hawaii resident can expect another 16.2 years of healthy living).  In late 2015, an Action Plan was completed and implementation began.  

Disparities in Life Expectancies ranging from 86.1 years for Chinese to 72.8 years for Samoan. 

David Leake, PhD, of CDS presented on Why Hawaii Needs to Mandate Visitability in New Housing … Now!  Based on Analysis of Impediments to Fair Housing Choice with a Focus on People with Disabilities, CDS researchers found that people with mobility impairments faced barriers in their own homes and in the homes of friends they would like to visit.

• Only 4 of about 100 Honolulu rentals are accessible
• Many houses in rural Hawaii are raised above the ground
• Many low-rise apartment buildings are walkups

CDS recommended that Hawaii follow the lead of Vermont State in requiring that all new homes be built to be visitable:

• At least one zero-step entrance
• Interior doors with at least 32” of clear passage space
• At least half a bath that is accessible on the main floor
• Reinforcement in bathroom walls for future grab bar installation
• Space to maneuver a wheelchair in food preparation areas
• Light switches and electrical outlets within comfortable reach for all 

Traffic systems engineer Mike Packard discussed Honolulu Complete Streets  to “improve safety, accessibility and comfort for all users, encourage physical activity, and reflect community needs and character.”  During Q & A, I asked what was being done to pave sidewalks for people who use walkers and wheelchairs.  Mike explained that Honolulu’s older neighborhoods (Kaimuki, Manoa, Kailua) lack sidewalks due to ordinance 30 years ago requiring property owner to pay cost of new sidewalks.  Now a bill provides that the City may proceed to pay full cost of sidewalk construction.  

Curt Kiriu, Certified Aging in Place Specialist (CAPS) and caregiver of his father, presented on Homes for Independent Living.  He defined independent living as being in control of how things are done, as opposed to doing things by yourself. 

  

Accessibility to-do: Wider ramp (left photo taken in Chinatown) and paved sidewalk (right photo taken in Makiki Heights) needed.

Integrated Healing System workshop featured presenters emphasizing a holistic approach to natural healing.  Elizabeth Chen Christenson, MD, L.Ac., presented on Traditional Chinese Medicine Principles and herbs.  

Bay Area gerontologist Ann Colichidas presented on Mind Matters, focusing on lifestyle interventions: healthy diet, exercise, stress reduction, supplementation, and social engagement. 

Ann Colichidas, Qi Gong Grandmaster Effie Chow and Terry Shintani performed choreographed dancing, which is great workout for mind, heart and body. 

Terry Shintani, MD, MPH, JD, presented his New Paradigm of Health, based on his Peace Diet (2014), starting with more natural approaches to health like the environment, nutrition, lifestyle, herbs and supplements.  He emphasized holistic wellness over the medical model’s focus on dis-ease prevention with harm-aceuticals.

Dementia-friendly

Geriatrician and author G. Allen Power, M.D. has noted that people with dementia are the “only group of people who are told that they cannot live around the rest of us, and the only people whose needs we will not learn to accommodate in an integrated long-term care setting.”  He further observed that people with dementia “blossom when moved back to integrated environments,” instead of being stuck in self-fulfilling prophecies that are often adopted when they are segregated and treated for their deficits.

Instead of stigmatizing and isolating people with dementia, anyone can become a Dementia Friend by showing empathy (understand what it’s like to live with dementia) and more compassion (“empathy in action”). Dementia Friends can get involved in building dementia-friendly communities, a collective effort that involves public awareness and education to better understand, respect and support the unique needs of people with dementia so they feel more a part of the community. 

Dementia Friendly America (DFA) provides sector guides describing signs of dementia, dementia-friendly communication skills, and other tips for neighbors and community members, health care throughout the continuum, businesses, etc.  The 2015 White House Conference on Aging Final Report included DFA Initiative and Administration for Community Living’s Alzheimer’s Disease Initiative to support dementia-friendly communities.  

Hawai'i Alzheimer’s Disease Initiative (HADI), a project of the UH Center on Aging, provides a wealth of resources (Memory Care Navigators, Savvy Caregiver program, memory clinics, website, etc.) to strengthen dementia-capability in communities. 

One of the HADI resources was training by Dorothy Colby, who presented “Normal vs. Not Normal Aging” workshop based on occupational therapist Teepa Snow’s Positive Approach to Care (PAC) series, with trainees.  (Note Spam musubi on far right table. In some Honolulu stores, Spam cans were stored in locked plastic cases due to Spam heists!) 

Dorothy is Hawaii’s certified PAC trainer and Administrator at Hale Ku’ike (“House of Understanding”) which serves memory care residents in Nu’uanu.  Based on a social model, Hale Ku’ike provides a home-like setting that promotes freedom, choice and familiarity:  residents have unrestricted access to walking paths and seating in healing gardens, daily programs (therapeutic music, Tai Chi, aromatherapy, etc.), involvement in the natural rhythms of everyday life (gardening, meal preparation), live-in trained service dogs (labradoodles), meals prepared from scratch.  

This workshop included handout and video clips of Teepa acting out scenarios. Workshop was mostly interactive with role-playing on how to approach someone with dementia based on how humans take in data using senses in this specific order:

1.     what you see (visual) – most powerful sensory input

2.     what you hear (auditory)

3.     what you feel/touch (tactile)

4.     what you smell

5.     what you taste

Therefore, do not touch person with dementia until you’ve done a visual/verbal.  Since people with dementia have difficulty initiating, use cueing to announce what will happen next.  Don’t do “to” someone, but do “with” someone as a partner—for example, position side by side, hand under hand to support with activities like brushing hair or teeth.  

Workshop participants graduated with certificates.

Workshop took place at 15 Craigside (“Live your life, your way”), a continuing care retirement community (independent living, assisted living, skilled nursing) in Nu'uanu, located opposite Oahu Cemetery.  Entrance fees range from $176,100 (studio in 3^rd floor, Makai or Oceanside) to $429,000 (corner 1-bedroom on 12^th floor).  Entrance fee costs are lower on Makai up to 8^th floor, than Mauka or Mountainside).  Monthly service charges range from $3,280 (1 occupant in studio) to $6,133 (2 occupants in 1-bedroom).  Craigside van reads, “Retirement living within reach”… of cemetery! 

Oahu Cemetery, Hawaii’s oldest public cemetery founded in 1844, contains the “most abundant collection of 19^th Century grave art in Hawaii.”  Nu'uanu Avenue sidewalks were among the earliest paved in 1881. 

Treetop with crown shyness provides pretty shelter while waiting for TheBus

Perhaps my upbringing in Hawaii made me a nature snob, so I shudder when I see people with dementia treated like criminals in locked facilities, deprived of access to nature (fresh outdoor air, sunshine, living plants in rooms) and natural movements (prolonged sitting, ostensibly to avoid falls, can impair mobility and actually increase fall risk).  Side effects from medications, given to people who become agitated, perhaps due to boredom of sitting around, further increase fall risk. 

Yet, connecting with and exploring in nature—along with the realization that we’re part of this larger cosmos—may be the prescription for people, with or without dementia.  The title of Florence Williams’ new book, The Nature Fix: Why Nature Makes us Happier, Healthier, and More Creative (2017) says it all.  Albert Einstein, Nikola Tesla and Charles Darwin walked outdoors to stimulate their mental processes. Even my homebound clients in SROs knew to seek comfort in nature, enjoying houseplants that also improve indoor air quality (thanks to Meals on Wheels which delivers houseplants, in addition to meals and disaster kits).

“People of all ages and abilities are able to move about with ease, enjoy Honolulu’s sunshine and natural beauty, and share the Aloha spirit with one another.”—Honolulu Age-Friendly City Action Plan’s Vision for Outdoor Spaces and Buildings

Long-term care

Until recently, Hawaii law permitted no more than one private pay resident per community care home so private-paying elderly couples (like 96-year-old Noboru Kawamoto and his 90-year-old wife Elaine) were split apart.  In July 2017, Hawaii Governor Ige signed a bill intended to reunite the Kawamoto couple in a community-based care home. 

Honolulu Star-Advertiser reported a proliferation of controversial Aging in Place (AiP) facilities—estimated anywhere from “dozens” to 200—that have opened within the past several years in Hawaii.  In this AiP model, residents sign a boarding agreement with a homeowner, setting a monthly rent; and then a separate agreement with a home health care company, setting a separate monthly rate.  Sometimes the home and care company are owned by the same person.  According to Maile Harada, RN, who advises operators on establishing AiP facilities, this model was “born out of necessity” due to long wait times for the State Department of Health (DOH) to issue home licenses.  DOH’s Office of Health Care Assurance oversees more than 12,300 residents who live in about 1,700 long-term care facilities.  AiP facilities are not regulated, and limited to private pay, yet costs are similar to licensed facilities at $5,000 to $6,000 per month.

Place matters

This month’s three-day Legacy Film Festival on Aging (LFFoA) featured “Stay, or Move” program, exploring where we’ll live as we get older and what kind of role place plays in the quality of our lives: staying put in our homes (aging in place) or moving on to communities (aging in community).

Staying inside an air-conditioned theater was respite from the heat wave in San Francisco.  At least three seniors who lived alone at home in San Francisco succumbed to death over Labor Day weekend when temperatures rose to a record-breaking 106 degrees.  San Francisco and the U.S. Senate Special Committee on Aging held hearings on emergency preparedness and the special needs of Older Americans.  

Sunny skies brought smiles to LFFoA Director Sheila Malkind with Mother, Child filmmaker Tin Pang and his mother Kitty, outside New People Cinema.  As volunteer, I had awesome opportunities to meet and greet filmmakers and audience members when they arrived to the theater. Tin and Kitty had friends and family from Australia, Toronto and Brisbane (California) attending LFFoA.                            

Stay, or Move 

Bay Area filmmaker Kristi Denton Cohen answered questions about Stay or Move from Arlene Reiff, LFFoA Board member and Transition Network’s San Francisco Bay Area chapter co-founder.  Some films (like Stay or Move) shown at LFFoA are freely available online, but it still pays to attend LFFoA, which facilitates community dialogue with filmmakers about important issues like housing, transportation, long-term care, etc.  

Kristi and Arlene took questions from the audience. An award-winning filmmaker with over 25 years of experience, Kristi explained that she had no children and decided to make a series of short documentary films exploring housing options as we get older because she wanted to make the decision for herself before someone else did. 

LFFoA showed the following short films from Stay or Move:

·      Deciding to Stay or Move: UC Berkeley Social Work Professor Andrew Scharlach discussed warning signs when it may be time to move (fall risk, can’t get out to places where they want to go, no longer connected to community) and advised finding an “environment that you’d like to live in where people will be part of your life forever – any age, so you’re not alone in the world, people really know who you are.”

·      Staying Put:  building an Accessory Dwelling Unit (ADU) for Multigenerational Living and accessing supports from Marin Villages of the Village Movement 

·      Moving On: affordable housing with onsite resident services coordinator at Strawberry Creek Lodge in Berkeley.

Dial-A-Ride 

Dial-A-Ride (2016) was a short documentary featuring the bonding of passengers on board a UK community bus that provided weekly door-to-door transport for isolated older people living in remote and rural South Wales with no public transport nearby. The pleasant driver provided commentary, noting his interactions with passengers always provided "something interesting or a surprise."  The film’s website provided this Director’s statement:

“With government funding for a community transport cut by half in 2016, it is a tragedy that invaluable services like Brecon Dial-A-Ride are being shut down around the country.  These buses are a lifeline for many older people in the UK, particularly in remote areas where they can’t necessarily get to a bus stop or afford a taxi.  In the UK, 49% of people over 75 live alone, and over two million people are ‘persistently lonely.’  Without a means of transport, many of these older people feel trapped in their own homes.”

The Green House Project

Stay, or Move’s website includes a three-minute video, Celebrating 10 Years of the Green House Project, as a nursing home alternative under Moving On.  At LFFoA, Sheila decided to screen the 25-minute documentary The Green House Project (2004), showing the development of the first Green House in Tupelo, Mississippi. A Green House is home for a dozen residents with private rooms, a central gathering place, open kitchen, table for communal dining to promote convivium, easy access to outdoors garden/patio, and staffed by care partners (called shahbaz, Persian for royal falcons).  In 2005, Robert Wood Johnson Foundation granted $10 million to the Green House Project to replicate the model, which provides residents better, safer and more personalized care so they enjoy better outcomes (quality of life, improved health and remain independent longer) than nursing homes.  

LFFoA Board member Paul Kleyman talked about his hero, Dr. Bill Thomas, and the Pioneer Network leading culture change to revolutionize long-term care institutionalization and replace nursing homes.  He also spoke about home and community based services, like PACE (Program of All-Inclusive Care for Elderly) through IOA and On Lok Lifeways, as alternatives to nursing homes.

Last year, Dr. Thomas told The Washington Post: “We need to get people out of hospitals, we need to create a rich set of community-based alternatives… [the goal is] normalizing the entire lifespan instead of separating and stigmatizing one part as something different.”  In moving beyond nursing homes by setting up Green Houses, Dr. Thomas noted an advantage of their small size:  “Within six weeks, they had to send a truck around to pick up all the wheelchairs …You know why most people [in nursing homes] use wheelchairs? Because the buildings are so damn big…The buildings disable elders.”

In an interview with filmmaker Dale Bell (of And Thou Shalt Honor, a 2002 PBS caregiving outreach project ), Dr. Thomas discussed his Green House Project model, based on principles of The Eden Alternative:

“The nursing home takes good, good, loving, caring people and plugs them into an institutional factory-like arrangement. And it's no good… the best alternative I can think of is a garden…a place that's worthy of our elders, we make a place that enriches all of our lives, caregiver, family member and elder alike… we call it the Eden Alternative.”

Green Care Farms offers a nursing home alternative closer to a garden (as described in blog post coverage of IAGG World Congress).  More recently, Dr. Thomas introduced Minka, an affordable age-friendly, small-scale dwelling. 

Mother, Child 

Sheila facilitated Q&A with Mother, Child (2017) filmmaker Tin Pang and his mother Kitty. Mother, Child is a short film based on Tin’s own experience as carer for his mother after she suffered a stroke in 2015, just 10 days after her retirement at age 65, and then she endured a long rehabilitation to relearn how to talk and walk. Only child Tin dropped everything in Sydney and rushed to care for his single mother in the Gold Coast.  As portrayed in the film, there is inevitable tension when son, who moved out 10 years earlier, returned home to share a small apartment with his mother who became dependent on him in a role reversal with now 30-something year-old child caring for mother who continued to exert control, like reminding her son how to cook steamed fish. Kitty said the stroke caused disorientation and re-examination of her relationship to her son.  Tin said writing about his experience as carer was cathartic, preferable to talk therapy, and making the film was an opportunity to advocate for better supports for stroke victims and their carers. (One in six people will experience a stroke in their lifetime; a stroke occurs every ten minutes in Australia.) 

Tin told Sheila that he filmed “Mother, Child” in just one take! After meeting Tin and Kitty in-person and then seeing their intro trailer, I actually preferred the charming and dynamic Tin and Kitty over the actors Lawrence Leung and Gabrielle Chan who played son and mother. 

Tin reported that after 8 months in the Gold Coast, he and Kitty moved to a smaller apartment in Sydney. Kitty said she has recovered about 80% since her stroke, and Tin has resumed his film career to great success!  

Should the need arise, I would be like Tin and drop everything to care for my own parents so they can age in place.  In the meantime, I continue exploring options for aging in place and community.  

World Alzheimer’s Month 

September is World Alzheimer’s Month.  According to the Alzheimer’s Association:

·      After age 85, the risk of Alzheimer’s reaches nearly 50 percent 

·      Compared to only 4 percent of the general population, 75 percent of the people with Alzheimer’s will be admitted to a nursing home by age 80. 

As a nursing home alternative for people with severe dementia, Hogeweyk Dementia Village in the Netherlands is designed like a small village with residences (each home houses 6 to 8 people with the same lifestyle), courtyards, a grocery store, restaurants and a movie theater.  Residents can move freely inside the house and outside, though they can’t venture outside of the periphery doors of the village on their own.  All staff members are trained in dementia care.

“The act of engaging in community …about developing a more personable and comprehensive way of treating disease...The countless studies reinforcing how many dementia patients feel lonely or isolated, juxtaposed with Hogewey’s considerable success with these residents, call into question how much of dementia is a result of disease, and how much is a result of how we treat it.– Josh Planos, “The Dutch Village Where Everyone Has Dementia”, The Atlantic (Nov. 14, 2014)  

https://changingaging.org/dementia/re-branding-dementia-advocacy/

In Dementia Beyond Drugs: Changing the Culture of Care (2010), geriatrician G. Allen Power, M.D., proposed doing away with segregation of people with dementia in living areas labeled after a disease (like “dementia care” or “memory care”) to rid the institutional mindset that reduces people to their deficits.  He criticized dementia-specific living environments (specialized physical design, specialized staffing, dementia-specific activity programming, lock-down exit systems, isolation of people with behavioral symptoms, complaints of others who don’t want “those people” in their living areas):

1.     physical design does not look and feel like home:  living in an unfamiliar environment creates unmet needs that trigger behavioral expressions, so it’s best to dismantle the institution (long halls, double rooms, nursing stations, alarms, call bells; lack of relationship, autonomy and meaning) and recreate a comfortable home (Green House Project).

2.      civil rights issue: treating people with disabilities as “separate, but equal, not in our neighborhood” reflects fears and misconceptions about the disease, and sells short the potential for growth and engagement that still exists in people with dementia.

Dr.  Power noted that the Green House Model followed a process similar to that used to deinstitutionalize people with developmental and psychiatric disabilities using group homes. The Green House blends people with and without dementia.  Instead of segregation, Dr. Power noted the advantages of a diverse community such as the creation of a nurturing interdependent community.  

Peace, love and understanding

Last Saturday, thousands rallied at the “Peace, Love and Understanding” event in San Francisco’s Civic Center -- very much in the spirit of San Francisco’s Summer of Love 50 years ago!

“Still, here we are, 50 years later, marveling at the hippies, who came and went as mysteriously as the Druids, and wondering: What was that? They left behind a vague but definite cultural imprint, a kind of peculiar residue that shows up at places like yoga studios in strip malls or organic vegetable stands at the farmer’s market. That flash on the horizon that lit up the world from the ground zero of Haight-Ashbury a half-century back has never been fully extinguished. No matter how commercialized, corrupted, disintegrated, defiled or reviled the hippies have been, they refuse to disappear. Part of the reason was that Boomers have always remembered their youth. At the same time, the inaccurate mythology of the Summer of Love was such that younger generations have tried to replicate it.”—Joel Selvin, “Summer of Love: Paradise that never was lives on in legend,” San Francisco Chronicle (March 10, 2017) 

Progressive San Francisco launched the long-awaited Support @ Home (S@H), a new home care voucher program funded by San Francisco Department of Aging and Adult Services and administered by Institute on Aging (IOA).  IOA held an information meeting with Community Living Fund Director Laura Liesem and S@H Director Jeanne Caruso who explained the program guidelines. S@H is designed to serve San Francisco residents age 18+ who require assistance with at least two activities of daily living or instrumental activities of daily living, yet are not eligible for other subsidized home care such as Medi-Cal In-Home Supportive Services (IHSS), due to income/resource limits.  For those who demonstrate the program’s financial need requirements, S@H provides up to 15 hours of subsidized home care per week from contracted agencies, so residents can continue living safely in their homes.  During this two-year pilot program, S@H’s two-person staff intends to serve 250 clients.

To better understand those good ol’ days and legacy for today’s older Americans (post-World War II Baby Boom generation), I attended more events commemorating the 50^th anniversary of the Summer of Love.

Revisiting the Summer of Love

Northwestern University’s Center for Civic Engagement and The California Historical Society presented an academic conference, “Revisiting the Summer of Love, Rethinking Counterculture.” 

Northwestern University’s Michael J. Kramer presented the opening lecture, Hot Fun in the Summertime: Microcosmic and Macrocosmic Views of the Summer of Love. Summer of Love participants attempted to develop a social structure for living in the Now.   

Haight Ashbury Survival School: predecessor to Senior & Disability Action’s Senior Survival School?  

Moonalice Trio performed 1960s psychedelic rock music. 

Stanford University historian Fred Turner presented his lecture, From Counterculture to Cyberculture: The Dream of a World Beyond Politics, based on his award-winning book, From Counterculture to Cyberculture: Stewart Brand, the Whole EarthNetwork, and the Rise of Digital Utopianism (2006) and The Democratic Surround: Multimedia and American Liberalism from World War II to the Psychedelic Sixties (2013).  He provided an overview of how the counterculture's values of back-to-the-land, small-scale technologies, peer collaboration and communication shaped the era's communes and today's social media.

According to Fred Turner, the counterculture was represented by the New Left and New Communalists: both movements were anti-bureaucracy, anti-big technology and anti-mass culture … the dream of a world beyond politics.  Buckminster Fuller's artist-scientists would remake the world through design, not politics.  Communes disabled discussion by "rule of cool," so most communes collapsed unless they were authoritarian or religious.

Stewart Brand's The Whole Earth Catalog (1968) introduced new tools for the New Communalists.

Rural Communes panel:

• Ramon Sender Barayon on Open Land Sixties Communes in Sonoma County talked about Morning Star and Wheeler Ranches, two hippie rural communes in western Sonoma
• Timothy Miller from University of Kansas on Revisiting the 60s Communes, noted hundreds of communes remain today outside the mainstream
• Benjamin Klein of CSU East Bay on A Mobile Hallucination: Celebrating the 4^th of July with the Hog Farm, shared photos of the great hippie migration between Taos and Santa Fe, taken by his uncle Irwin between 1967 and 1971.

In "Peace, Love, and Social Security: Baby Boomers Retire to the Commune," The Atlantic reporter Anna Spinner found former hippies and growing numbers of Baby Boomers choosing to retire in intentional communities that are multi-generational for support and care--different from the youthful experiment of communes.

Robyn Spencer of Lehman College on The Black Power Revolution and the Summer of Love.  She talked about the role of the Vietnam War protest and failed War on Poverty on the rise of the Black Panther Party. She also observed that the conference's predominantly white male audience was similar to Summer of Love participants.  

From Punishment to Protection: Human Service Innovation in the Summer of Love panel talked about the beginnings of their agencies as welcoming support of the thousands of young people who came to San Francisco during the Summer of Love:

• Hospitality House Executive Director Joe Wilson on Building Community in the Central City for homeless, mostly LGBT youth who arrived in the Tenderloin
• Huckleberry Youth Programs Executive Director Douglas Styles on Tension Between Experiment and Establishment: Sustained Innovation for teenage runaways
• Haight Ashbury Free Medical Clinic Founder David E. Smith on Haight Ashbury Free Medical Clinic: Health Care is a Right treated people addicted to drugs when it was a crime for physicians to treat addicts.

Identity and Transformation of the Self panel:

• Blake Slonecker of Heritage University on “It’s Not Unmanly”: Sexual Politics and Collective Work at the Eugene Augur, 1969-1974
• Sherry L. Smith of Southern Methodist University on Revisiting the Hippies and Native Americans
• Jeremy Varon of The New School on Identity, Performance, Solidarity: Self and Community in the 1960s Counterculture                     

Northwestern University’s Stephen F. Eisenman on William Blake and the Age of Aquarius 

Intellectual Origins of the Counterculture: How Theory Shaped Practice panel:

• James Block of DePaul University on New Individuals in New Communities: The Counterculture Vision of Post-Liberal America
• Michael J. Kramer of Northwestern University on “A Tiny Banner Against the Inhumanities of the Technocracy”: Unfurling Theodore Roszak’s Countercultural Social Criticism 

• Dan A. Lewis of Northwestern University on The Psyche and Polis in Social Theory: A Geography of Influence in the Bay Area 

David Farber of University of Kansas on From Innocence to Experience: LSD, the Counterculture and Sustainable Lives, described the many countercultural practices that have gone mainstream.  

The Media and the Summer of Love: From Street to Straight panel:

• Joel Selvin, author of The Summer of Love: The Inside Story of LSD, Rock & Roll, Free Love and High Time in the Wild West (1999)
• Rosie McGee, photographer and author of Dancing with the Dead (2013)
• Charles Perry, author of The Haight-Ashbury: A History Overground and Underground Press
• Abe Peck, author of Uncovering the Sixties: The Life and Times of the Underground Press (1985) 

Commemorative poster

Diggerly-Do’s 

In Diggerly-Do’s, Kent Minaut recalled the first six months of the Diggers: free food in the park, encounters with police, free store, meeting Black Panther Huey Newton, etc.

Chris Carlsson of Shaping SF facilitated Q & A after Kent’s performance. 

Appearing incognito in the audience was Digger Peter Coyote (at left in photo), author of Sleeping Where I Fall, his immensely readable memoir of the 1960s. 

Digger Judy Goldhaft at literature table

“The Hippie Revolution”

After screening of Jack O’Connell’s documentary, “The Hippie Revolution” (1968; a version updated in 1986 can be viewed online at Jack O’Connell’s website) at San Francisco Main Library, Ben Fong-Torres interviewed Louise “Today” Malone.  Now age 60 and a grandmother, Today calls herself “Yesterday” – continues to believe and practice peace, love and understanding, but has re-evaluated her prior drug use, preferring meditation and yoga.

Flower Power at Asian Art Museum

 Peace at de Young Museum