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.