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.
THE MAKING OF A LATE-LIFE FILMMAKER
ReplyDelete11/16/2015
ELLEN SIMON
Katherine Roselli, a longtime pediatric physical therapist, …just finished showing her fourth film, “Old?!”at five film festivals around the country, …The film is built on interviews about aging with people in every life stage — from toddler through centenarian.
“It reaffirmed for me that there is no such thing as an ordinary person,” Roselli said in a recent interview with Senior Planet. “We’re all extraordinary. We all have wisdom to share with each other, from little kids on up. It was a delightful and wondrous process to see people open up and share.”
…What inspired you to make “Old?!”?
I thought, I’m in the third stage of my life. What does it mean to be old? Ever since we’re little kids, everyone asks, “How old are you?” Then there’s a period of life where it pretty much stops. No one goes up to teenagers and asks, “How old are you?” I didn’t have any agenda other than listening to people talk about their perspectives on aging. But I didn’t want it to be aging experts talking about what it means to live longer. Still, I feel like so many of the things experts say came out in the film.
…What’s your goal for “Old?!”?
My goal is to get people to think about things that are happening that they might not be paying attention to, and through that process to help engage them more in their lives and help them prepare for the different stages. Aging is happening, and aging with attitude is great. At the same time, there’s that shift in consciousness that I feel in mourning the things I no longer can do, embracing the things I can do and going forward with as much energy, joy and attitude as possible.
Let’s talk about how you made the shift: Did the skills you honed in your first career help you with the interviews during your filmmaking process?
Before the interviews, I said, It’s just going to be me and my camera. I appreciate you being spontaneous and speaking from the heart. All my years working in healthcare, where all the people I was dealing with were in pain and anxious — I learned the art of making people feel comfortable. Some of the same skills came into play while I was interviewing for the film as when I was making people feel comfortable in an intimidating medical setting. Everything we have brings us to this moment.
Making films is cost intensive – How do you finance your new career?
I finance my own films with one of my retirement streams. I use an SLR camera that does video; I use a mike that goes with the camera that allows me to do “run and done.” I use natural light. One of the reasons I get intimate interviews is that it’s just me and the camera. There’s not a whole bunch of filmmaking paraphernalia around me.
…Do you have any advice for aspiring filmmakers?
You have to have kind of a thick skin when you put your stuff out there. More than half the film festivals we entered didn’t accept us. The ones that did, we did really well. A lot of film festivals are looking for edgy, and we’re not edgy.
Was there any subject whom you interviewed and thought, “This is who I want to be when I’m older?”
The two artists, one is 81, the other is 93, who are both creating and doing new things with their art, who are so engaged. The 81-year-old artist, her focus is on farm workers and wanting to bring them to life and how much our whole food system depends on them. Harriet, 93, lives by herself in the woods. She’s creating new ways to paint.
What does aging with attitude mean to you?
For me, it means waking up each morning and being grateful that I’m here and healthy and that I want to contribute something of myself to every day I have. For me, it’s the attitude of gratitude.
Watch Katherine Roselli’s film “Old?!” at http://seniorplanet.org/old-a-thought-provoking-film-asks-what-it-means/
http://seniorplanet.org/the-making-of-a-late-life-filmmaker-and-a-film-called-old/
Aging Poses New Challenges For Those With Special Needs
ReplyDeleteby Vikki Ortiz Healy, Chicago Tribune/TNS | August 1, 2016
CHICAGO —...In 1983, the average life expectancy for a person with Down syndrome was 25. Today, it’s 65 to 70, fueled largely by the mastery of a surgical procedure that corrects a heart defect present in 1 out of 2 people with Down syndrome, said Sara Weir, president of the National Down Syndrome Society, a nonprofit organization based in New York…
As the first generation of individuals with disabilities reaches ages not seen before, the medical community is still catching up. Most skilled nursing facilities are still made up of residents without disabilities, so people with disabilities may be better suited to an environment where caregivers are accustomed to taking their special needs into account.
“I don’t know that we understand what (people with disabilities) are going to be like when they’re 40 and 50 and 60,” said Dr. Keith Veselik, associate professor for internal medicine at Loyola University Health System…
At Misericordia, a 45-year-old campus that serves 500 residents with developmental and physical disabilities, signs of aging were hard to miss in residents whom staff had known for decades. Participants who were once active in the nonprofit’s on-campus businesses or jobs program got lost on the way to work. Others, once social and gregarious, became quiet and stopped participating in groups. Bifocals and gray hair became commonplace, administrators said.
But the facility didn’t have a system in place to care for residents’ problems related to aging.
“It was a source of tremendous stress for our staff and for all of the families,” said Michael Diaz, developmental training administrator at Misericordia, who noted that in some instances, signs of Alzheimer’s disease and other age-related illnesses appeared early and swiftly; in others it was barely recognizable over a long stretch of time…
Adults with Down syndrome are at greater risk than others to contract Alzheimer’s because the conditions are genetically linked, said Brian Chicoine, medical director of the Adult Down Syndrome Center at Advocate Lutheran General Hospital as well as medical director for Quinlan Terrace. Some research shows that an extra 21st chromosome, which is present in people with Down syndrome, adds to the risk of developing Alzheimer’s.
But the onset of Alzheimer’s in people with Down syndrome often appears differently than it may in the general population, Chicoine added.
While typical Alzheimer’s patients may experience seizures about 2 percent of the time, very late in the disease, those with Down syndrome have seizures almost 75 percent of the time, and often as one of the first symptoms. Many people with Alzheimer’s disease experience swelling over time. This swelling shows up for people with Down syndrome earlier, Chicoine said.
Being proactive about elder care is a more pragmatic approach than waiting for problems to arise, Chicoine said.
“People are living longer, so we really are going to have to do this and do it well,” Chicoine said. “If we don’t do the less expensive things well that can keep people out of the hospital and keep them healthy, we’re going to pay more for the more expensive things like hospitalizations.”
At Quinlan, facilities and activities mirror other homes designed to help people with memory deficiencies transition into their senior years gracefully. Hardwood floors are deliberately patterned in the same direction, following research that shows continuity can be calming to the aging mind. Each door is labeled not just with a name, but with a framed picture of its tenant. And days are structured so that residents shuffle between classes to refresh their counting skills and social activities such as games of bingo and Candy Land.
Staff say that in an environment of peers with similar disabilities and long-standing friendships, the residents experience what many families want for their aging relatives…
https://www.disabilityscoop.com/2016/08/01/aging-challenges-special-needs/22557/
What happens to developmentally disabled as parents age, die?
ReplyDeleteBY JEN FIFIELD, STATELINE August 10, 2016 at 9:37 AM EDT
ROCKVILLE, Md. —…About 860,000 people over 60 nationwide are in Beth’s place, caring for someone with intellectual or developmental disabilities in their home. And many are waiting, sometimes for years, for state-provided Medicaid help for their disabled child, sister or brother, such as placement in a group home, day services, or transportation or employment programs. If they can’t afford to pay for these services on their own, under the federal-state Medicaid system, their relative could end up in an institution.
As the number of older caregivers grows, and their need for help becomes more dire, a few states have passed laws to give older caregivers a chance to help decide where, and how, the person they care for will live…
First generation
This generation of caregivers over 60 watched over decades as the U.S. grew more understanding and inclusive of people with disabilities. A movement swept the country in the 1970s and ’80s to deinstitutionalize people with disabilities. And for decades now, most people with disabilities who receive Medicaid help have been cared for at home by family members.
In 2013, spending for community- and home-based services surpassed spending for large institutions, such as mental hospitals and nursing homes, for the first time. By that time, 14 states no longer had any large state-run institutions for people with intellectual or developmental disabilities, and many others had only a few, according to University of Colorado research.
The move to deinstitutionalize care has provided care that is more personalized while also saving states money. Average costs for care in a state-run institution, in 2013, ranged from about $129,000 a year in Arizona to about $603,000 in New York, while the average state costs of community-based services nationally is $43,000, according to the University of Colorado.
What this has left, though, is fewer residential options, and lengthening waiting lists. About 198,000 people were waiting for home- or community-based services in the 34 states that reported data in 2013, according to University of Minnesota research. The longest waiting lists were in Ohio (41,500), Illinois (23,000) and Florida (22,400).
Some states don’t keep waiting lists. In California, people with intellectual or developmental disabilities qualify for the services they need under a state-run health system. This means they should be getting the services they need.
But April Lopez, chairwoman of California’s State Council on Developmental Disabilities, said that’s not always the case there. Some services aren’t available when you need them, she said. The state’s reimbursement rate is so low, she said, it discourages doctors and health centers from providing services.
If states aren’t able to provide services for everyone, they should focus on providing more support for family caregivers, such as high-quality case management and respite services, said Susan Parish, director of the Lurie Institute for Disability Policy at Brandeis University in Massachusetts.
With medical, technological and public health advances, people with disabilities are living longer than before, Parish said. And with family size shrinking over the years, fewer siblings are around to assume care of their brother or sister as their parents age.
Caregivers need help transitioning out of their role — finding the person with disabilities a place to live, money, benefits and a new guardian, Parish said.
“I’ve worked with several parents who said they’ve hoped their son or daughter would die before they did because they don’t feel there are supports out there,” she said…
year, according to a spokeswoman, Sarah Tanksley.
http://www.pbs.org/newshour/rundown/happens-developmentally-disabled-parents-age-die/
Are You Old? Infirm? Then Kindly Disappear
ReplyDeleteFrank Bruni DEC. 16, 2017
LITCHFIELD PARK, Ariz. — Nancy Root remembers when she vanished.
Not the exact date, but the occasion: She went shopping …Because the mall was so big and her legs were so weak, she used a wheelchair, which was new to her, and had a friend push her.
Their wait for service was unusually long, and later, as she used the wheelchair more and more, she understood why. In the chair she became invisible. In the chair she turned radioactive. People looked over her, around her, through her. They withdrew. It was the craziest thing. She had the same keen mind, the same quick wit. But most new acquaintances didn’t notice, because most no longer bothered to.
She told me all of this recently not in anger but in bafflement. Could I explain why her infirmity and her age — she’s 82 — erase her? She has her own theories. Maybe strangers worry that she’ll need something from them. Maybe they see in her their worst fears about their own futures.
Probably they extrapolate from her physical diminishment. “They think I’m mentally incapacitated,” she said. “I’m sure of that. I’d stake my life on it.”
“Doctors’ offices are the worst,” she added, describing how receptionists address whoever’s pushing her. “I’m not acknowledged. ‘Does this lady have an appointment?’ ‘Does this lady have her medical card?’ They don’t allow this lady to have a brain.”
But it’s not just receptionists. It’s flight attendants. Movie-theater employees. They make dismissive assumptions about people above a certain age or below a certain level of physical competence. Or they simply edit those people out of the frame.
… “On our cruise,” she wrote, “I again experienced the uneasiness of people toward us ‘physically challenged’ types. Even among our educated group, people ignored me.” So she parceled out her exposure to them. She and her companions did their own thing.
The more I thought about her experience, the more I realized how widespread it undoubtedly is, and how cruel.
The Centers for Disease Control and Prevention estimate that more than two million Americans use wheelchairs for their daily activities and 6.5 million depend on canes, crutches or walkers.
And the country is getting grayer and grayer. There are roughly 50 million Americans age 65 and older, representing about 15 percent of the population. According to projections, there will be 98 million by 2060, representing nearly 25 percent.
Nancy’s infirmity is unusual and goes back to when she was a 2-year-old in the Pittsburgh area in the late 1930s. She had polio, though her parents, knowing how ostracized children with the virus could be, kept that a secret.
“They destroyed all the evidence,” she said, “and they never told me.” Only many decades after the fact did she figure out the truth, and only in recent years did post-polio syndrome — a condition that afflicts many childhood survivors of the disease — degrade her muscles to a point where was forced to use a cane, then a wheelchair.
…Her arms grew feebler, her legs wobblier. Her pain intensified. Vanity be damned, she wore one of those pendants to be pressed if she fell. But she once forgot to put it on, tripped and lay on the living-room floor from 9 p.m. to 8 a.m., when a housekeeper happened to arrive. She recounted the episode to me in a tone of wonder at life’s freaky occurrences and at our ability to get through them. There wasn’t a scintilla of self-pity in her voice.
She considers herself lucky because her daughter is nearby. She has all the money that she needs. “I have my mind,” she said, “and I see where others are losing theirs.” She reads for many hours every day.
…she insisted on using her cane instead of her chair. She can do that if she takes a Percocet just beforehand and reconciles herself to a snail’s pace. …
https://www.nytimes.com/2017/12/16/opinion/sunday/are-you-old-infirm-then-kindly-disappear.html