Americans
with Disabilities Act (ADA) and Older Americans Act (OAA) are equal opportunity
laws that support full participation in community living. Americans also have equal opportunities to become Americans with disabilities and older Americans.
Aging with disability
Americans,
including those with disabilities, are living longer. As Eli Gottlieb wrote in The New York Times opinion piece, “Adult, Autistic and Ignored,” parents of dependent children with disabilities fear: What will happen to them when I’m gone? After his mother died, Eli became guardian of
his older brother Joshua who has autism and lives in an institution. Like his mother, Eli became an advocate critical
of the disability cliff when children with disabilities age-out of “special education” and the need for more attention to elderly autistic people like Joshua.
At 5th Annual Legacy Film Festival on Aging (LFFoA),
LFFoA
Director Sheila Malkind facilitated Caring program discussion with Dr. Toni Miles and Mimi and Dona
documentary filmmaker Sophie Sartain.
Sophie began filming her documentary in Dallas
Mimi makes the difficult decision to place Dona into Denton State-Supported
Assisted Living Center, a long-term care facility that serves people with
intellectual and developmental disabilities.
While Mimi thrives as she continues to live at home in the community,
Dona deteriorates precipitously in the institution. Spoiler
alert: Dona’s condition improves, but she is also diagnosed with early
Alzheimer’s; documentary ends with death of one. Save
this date: On November 23, Mimi and
Dona will have its Independent Lens premiere on PBS.
Family caregiving theme is constant: Sophie’s mother provided
care for Sophie’s father who had multiple sclerosis during the last 20 years of
his life; Sophie’s brother has a son with autism (“you need to live forever or
outlive your kid”); and back in Los
Angeles
Now there is greater public awareness of disabilities that survive into old age. In The New York Times article, "Is It Old Age, or A.D.H.D.?", Judith Berck reported on the dearth of research on older adults with A.D.H.D. and the challenge of treating them with the same drugs given to children.
Now there is greater public awareness of disabilities that survive into old age. In The New York Times article, "Is It Old Age, or A.D.H.D.?", Judith Berck reported on the dearth of research on older adults with A.D.H.D. and the challenge of treating them with the same drugs given to children.
At 19th Annual Golden Gate Self-Advocacy Conference: Give It to Me
Straight! Current Happenings in Our Developmental Disability Community, keynote speaker
Santi Rogers, Director of California Department of Developmental Services,
holds up Lanterman Act, California
law passed in 1977, that gives people with developmental disabilities the right
to services and supports to enable independent living. He
previously announced decision to close the remaining state-run developmental centers in California
and transition participants into community living.
More ADA
Steve
and Lillian Gonzalez Brown, co-founders of Institute on Disability Culture, greeted me at Disability Rights
Education and Defense Fund (DREDF)’s 36th Anniversary Celebration
Honoring the 25th Year of ADA
& Charting the Next 25 Years of Disability Rights at Ed Roberts Campus.
Thanks
to DREDF Director of Development Ingrid Tischer,
I was able to attend the Celebration fundraiser as volunteer.
Caramelized chocolate ganache with sea salt bars welcomed guests to tables. DREDF Senior
Policy Analyst Marilyn Golden urged us to sign cards (on tables) opposing HR 2646 because “it would take away legal representation for people with mental illness,
reduce privacy rights, and promote institutionalization.”
Celebration
co-sponsor Google Impact Challenge: Disability hosted
Bay Area Makeathon weekend to design a more accessible world.
ACLU attorney and DREDF
Board of Directors President Claudia Center called for donations, suggesting
$25 in honor of 25th anniversary of ADA
Evening’s
program capped with intergenerational discussion about ADA
Yomi
discussed her concerns about aging with disability, long-term care and still
being in charge of her life, who will care for her as she has no plan to "go
quietly to an institution, but if I do, what will it look like?" She noted ADA's influence on the built environment, yet need to reduce health disparities, adding that “death with dignity is such crap because if people have better choices, they don’t think to kill themselves.”
Disability Organizing Network (DOnetwork) presented California#ADA25 Conference: Access, Availability, Advocacy and
Civil Rights! at UC Hastings College of Law
- access: equal opportunity to
participate in all aspects of everyday life;
- availability: options and choices
which increase independence and freedom;
- advocacy: our history and
courageous actions of leaders that lead to today's inclusion; and
- civil rights: our just claim to equal citizenship
·
Arlene Mayerson,
DREDF Directing Attorney, was a principal architect of ADA 25 years ago. In order to have
equal opportunities for people with disabilities (PWD), they
had to have accommodations which meant they have to be treated differently.
After ADA
·
Paul Grossman, education civil rights
attorney talked about Lau v. Nichols (1974 U.S. Supreme
Court case finding that lack of language appropriate accommodation denied
Chinese students equal educational opportunities because same treatment is not equal opportunity) and the 504 sit-in laying the groundwork for ADA. He added that the second most exciting moment in disability rights has been since ADA Amendments Act of 2008 expanded the definition of disability (medication and other interventions that deal with effects of disability cannot be factors in determining whether individual is disabled), so disability-based discrimination cases can be heard on their merits.
·
Jim Patterson talked about “associational discrimination”: being pushed out of foreign
service career because his employer viewed his daughter’s disability as a
liability. After The New York Times published an article, “Whose disability is it anyway?” he returned to work as a full member of the diplomatic corps and became an
advocate for employment equality.
Do You Know Your Disability Civil Rights History? HolLynn D’Lil, author of Becoming Real in 24 Days: One Participant's Story of the 1977 504 Demonstrations, took over 350 black and white photos chronicling the takeover of the San Francisco Federal Building to demand that President Carter's administration implement regulations to Section 504 of the Rehabilitation Act, the first federal civil rights law for people with disabilities. At the time, Congressman Phil Burton said, "To have to demonstrate during a Democratic administration to fulfill a Republican promise is a painful irony."
Ted "can I get an accommodation?" Jackson, Community Organizing Director at California Foundation for Independent Living Centers (CFILC), moderated discussion during Breakfast with the Author Tony Coelho, who entered politics as his ministry after he was denied from pursuing Catholic
priesthood based on his epilepsy. While serving in U.S. House of
Representatives, he was principal author of ADA, which got bipartisan support due to supporters' personal relationships with PWD. He noted 52 countries now have disability laws based on ADA.
Disability Unity Festival: Strengthening our Communities - Celebrating 25 years of the ADA at UN and Civic Center
Plaza.
Connie Barker founded Environmental Health Network (EHN), which provides support, advocacy and information to the chemically and electrically injured: “If it’s not
healthy, it’s not green.” In addition to her own site http://ehnca.org/, she offered the following
resources:
Access Kids perform on entertainment stage
Aging + disability-friendly communities
Under disability laws, the person with disabilities has the burden to disclose his/her disability and ask, "can I get an accommodation?" Sometimes, people with "invisible disabilities"--like chemical sensitivities--might resist disclosure to avoid stigma ("it's all in your head"). As a more proactive approach to move beyond individual accommodations, universal design creates inclusive environments for everyone by placing the burden for accessibility on architecture.
Under disability laws, the person with disabilities has the burden to disclose his/her disability and ask, "can I get an accommodation?" Sometimes, people with "invisible disabilities"--like chemical sensitivities--might resist disclosure to avoid stigma ("it's all in your head"). As a more proactive approach to move beyond individual accommodations, universal design creates inclusive environments for everyone by placing the burden for accessibility on architecture.
ADA Conference workshop included Homesick Living with Multiple Chemical Sensitivities:
Finding Accessible, Available, Affordable Housing, presented by Connie
Barker of EHN. Connie talked
about 11-room Ecology House,
the nation’s first HUD-funded housing for people with multiple chemical sensitivities (MCS) that was built over 20 years ago in San Rafael, and then showed
documentary, Homesick (2013) about director Susan Abod’s road trip to discover how people with MCS find safe
housing and cope with their disability.
Ed Roberts Campus was ideal to host At Home With
Growing Old (AHWGO) program, Dementia-Enabling Spaces: Bodies, Networks, Environments. Panelists were:
- Susan
Stadler, architect and AHWGO co-founder, substituted for Clare Cooper Marcus and discussed gardens for people with dementia like
- Dr. Mehrdad Ayati, geriatrician and author of Paths to Healthy Aging (2014), prescribed social interactions (“live like an Italian: engage brain in conversation, talk with hands”), value and respect elderly because “You cannot replace experience with knowledge (internet),” more geriatric training (completed by only 3% of U.S. medical students) and interdisciplinary teams in geriatrics
- Debora Tingley and Patricia Ris discussed Memory Care Café, a weekly social club for people with forgetfulness and their care partners.
