Hello
I hope you are well! Good news on our front — by emailing EVERYONE I know about our need for office space we came up with a good solution. A contact who I really respect, who happens to live/work all the way in China, had extra office space — in our building! Go figure. I emailed China to find space only an elevator ride away. So we will only have to move to a different floor at our same address. Yes, we will start to pay rent for the first time, but it's a very good deal with nice people, so we feel lucky.
Now all we need are more wonderful fellows. Do you know great people who are looking to spend their summers making a positive difference? If so, please send them our way!
Jennifer Laszlo Mizrahi
President, RespectAbility
P.S. We are a part of a really fun thing — a comedy night on Monday to raise money for our group and other groups working to include people with disabilities. If you can come, I would love to see you there! Meanwhile, enjoy all the info below.
Conjuring Images of a Bionic Future by Farhad Manjoo
Dick Loizeaux recently found himself meandering through a noisy New York nightclub. This was unusual; Mr. Loizeaux, a 65-year-old former pastor, began suffering hearing loss nearly a decade ago, and nightclubs are not really his scene. “They’re the absolute worst place to hear anybody talk,” he said.But this time was different. Mr. Loizeaux had gone to the club to test out the GN ReSound Linx, one of two new models of advanced hearing aids that can be adjusted precisely through software built into Apple’s iPhone. When he entered the club, Mr. Loizeaux tapped on his phone to switch his hearing aids into “restaurant mode.” The setting amplified the sound coming from the hearing aids’ forward-facing microphones, reducing background noise. To play down the music, he turned down the hearing aids’ bass level and bumped up the treble. Then, as he began chatting with a person standing to his left, Mr. Loizeaux tapped his phone to favor the microphone in his left hearing aid, and to turn down the one in his right ear.
Dick Loizeaux, 65, who began suffering hearing loss nearly a decade ago, recently had a “comfortable conversation” in a noisy New York nightclub using the GN ReSound Linx hearing aid. Credit Sally Ryan for The New York Times
The results were striking. “After a few adjustments, I was having a comfortable conversation in a nightclub,” Mr. Loizeaux told me during a recent phone interview — a phone call he would have had difficulty making with his older hearing aids. “My wife was standing next to me in the club and she was having trouble having the same conversation, and she has perfect hearing.”
It’s only a slight exaggeration to say that the latest crop of advanced hearing aids are better than the ears most of us were born with. The devices can stream phone calls and music directly to your ears from your phone. They can tailor their acoustic systems to your location; when the phone detects that you have entered your favorite sports bar, it adjusts the hearing aids to that environment.
The hearing aids even let you transform your phone into an extra set of ears. If you’re chatting with your co-worker across a long table, set the phone in front of her, and her words will stream directly to your ears.
When I recently tried out the Linx and the Halo, another set of iPhone-connected hearing aids made by the American hearing aid company Starkey, I was floored. Wearing these hearing aids was like giving my ears a software upgrade. For the first time, I had fine-grain control over my acoustic environment, the sort of bionic capability I never realized I had craved. I’m 35 and I have normal hearing. But if I could, I’d wear these hearing aids all the time.
IPhone-connected hearing aids are just the beginning. Today most people who wear hearing aids, eyeglasses, prosthetic limbs and other accessibility devices do so to correct a disability. But new hearing aids point to the bionic future of disability devices.
As they merge with software baked into our mobile computers, devices that were once used simply to fix whatever ailed us will begin to do much more. In time, accessibility devices may even let us surpass natural human abilities. One day all of us, not just those who need to correct some physical deficit, may pick up a bionic accessory or two.
“There is a way in which this technology will give people with hearing loss the ability to outperform their normal-hearing counterparts,” said Dave Fabry, Starkey’s vice president for audiology and professional relations.
Credit Stuart Goldenberg
Imagine earpieces that let you tune in to a guy who is whispering across the room, or eyeglasses that allow you to scan the price of any item in a supermarket. Google and several international research teams have been working on smart contact lenses. In the beginning, these devices might monitor users’ health — for instance, they could keep an eye on a patient’s blood pressure or glucose levels — but more advanced models could display a digital overlay on your everyday life.
Or consider the future of prosthetic limbs, which are now benefiting from advances in robotics and mobile software. Advanced prosthetic devices can now be controlled through mobile apps. For instance, the i-Limb Ultra Revolution, made by Touch Bionics, allows people to select grip patterns and download new functions for their prosthetic hands using an iPhone. The longer you use it, the smarter your hand becomes.
Hearing aids are the natural place to begin our bionic quest. About 36 million American adults report some degree of hearing loss, according to the National Institute on Deafness and Other Communication Disorders, but only about a fifth of the people who would benefit from a hearing aid use one.
That’s because hearing aids, as a bit of technology, have long seemed stuck in the past. “Most people picture large, clunky bananas that fit behind your ears and show everyone you’re getting old,” said Ken Smith, an audiologist in Castro Valley, Calif., who has fitted more than two dozen patients with the Linx.
Until recently, many hearing aids were also difficult to use. For lots of potential users, especially people with only mild or moderate hearing loss, they didn’t do enough to improve sound in noisy environments.
Talking on the phone with a hearing aid was especially problematic. While some hearing aids offered streaming capabilities to cellphones, they were all clunky. To connect to phones, they required an extra streaming “wand,” a battery pack and wireless transmitter that the user wore around his neck — a device that nobody looked good lugging around.
In 2012, Apple announced the Made for iPhone Hearing Aid program, which would let the company’s mobile operating system connect directly to hearing aids using a low-power version of Bluetooth wireless technology. Representatives of both Starkey and GN ReSound say they saw the iPhone as a way to correct many of the tech problems that had hampered hearing aids. The phone could act as a remote control, a brain and an auxiliary microphone for hearing aids, and it would finally let people make phone calls and listen to music without carrying a wireless dongle.
GN ReSound’s Linx is one of two new models of advanced hearing aids that can be adjusted precisely through software built into Apple’s iPhone. Credit Sally Ryan for The New York Times
But more than that, the companies say, the iPhone could do something potentially revolutionary for hearing aids. “A lot of the people who could benefit from wearing a hearing aid now don’t have any excuse — they can’t say it’s too clunky or not cool,” said Morten Hansen, GN ReSound’s vice president for partnerships and connectivity.
Dr. Fabry, of Starkey, was blunter: “We thought we could make hearing aids cool.”
Aesthetically, both companies seemed to have pulled off something close. The GN ReSound and Starkey hearing aids are fantastically tiny and attractive; each is just a fraction of the size of a conventional Bluetooth headset, and when they’re set behind your ears, they’re virtually invisible. They are also quite comfortable. A few minutes after fitting each model into my ears, I had forgotten they were there.
On the other hand, neither is cheap. Starkey’s Halo starts around $2,000 a hearing aid, while GN ReSound’s Linx begins at more than $3,000 each. Few health insurance plans cover the cost of hearing aids; Medicare does not.
Some people who have used them, though, said the new hearing aids were well worth the price. “I fell in love with them in the first 30 seconds,” said Todd Chamberlain, who recently began using a pair of Halos.
Mr. Chamberlain, who is 39 and works as an industrial safety officer in Ephrata, Wash., has worn hearing aids since he was 3 years old.
“I’m surprised they haven’t done this earlier — putting it all in an app, that seems so obvious these days,” he said.
Soon, we might be saying the same about all of our senses.
Email: farhad.manjoo@nytimes.com; Twitter: @fmanjoo
How Medicaid forces the disabled to be poor (but some bipartisan help is on the way). by Harold Pollack
Veronica Perrone Pollack and Vincent Perrone blow out candles. Photo by Harold Pollack.
Imagine that you are a young woman expecting your first child. Then you get into an awful crash that leaves you in a wheelchair. Or imagine that you suffer a high school wrestling injury that results in quadriplegia. Or imagine that you are intellectually disabled or living with severe mental illness, and you require long-term services and supports. If you have been reading my work, you might do more than imagine, since each of these stories involves real people who have experienced the best and the worst of what our American medical welfare state offers.
Medicaid plays a crucial role in each story. Of course the program has familiar shortcomings. Long-standing administrative challenges, ideological polarization over health reform perpetuate these difficulties. So does our nation’s tenuous commitment to the well-being of disadvantaged citizens.
On occasion, though, disability policy provides a welcome exception to this depressing pattern. Going back to the 1950s, liberal Democrats, conservative Republicans, and others in-between have made essential contributions, helping millions of people live happier, more productive, and fuller lives. My family is certainly quite grateful for the help provided to my brother-in-law Vincent, who requires a variety of Medicaid-financed services to address his Fragile X syndrome. Medicaid is essential in his life, and in the lives of 8.8 million other non-elderly Americans who live with significant disabilities.
Medicaid does have one huge flaw, which hurts millions of people living with disabilities, injuries, or chronic illness. You have to live, officially at least, as a pauper. With important variations across the states, most recipients are forbidden from having more than two or three thousand dollars in the bank.
You can generally keep your house or your car. That’s pretty much it. You can’t have that emergency fund on hand in case the muffler or the furnace breaks. And what about the stuff Medicaid doesn't cover? It’s nice to get your teeth cleaned or just to buy a Big Mac every once in awhile. Because of such means-testing, that new mother is forbidden from setting any money aside for her child’s education. That food services worker living with intellectual disabilities can’t save up for a nice vacation.
Then there’s retirement. As Joe Entwisle put things:
"The reality for someone in my situation is that retirement usually isn’t an option. You work until you die, literally. A friend of mine is a perfect example. It’s almost creepy the similarities in our life. Both of us had a spinal cord injury at 16. Both of us were injured wrestling. Both of us are policy analysts. He’s a really good guy. He’s 63 years old. He started working for the state many years ago. Yet because of the odd rules around Medicaid eligibility and the differential treatment of earned and unearned income, he literally cannot retire. He knows he has to work until he’s dead or until some rules change. As soon as he starts to draw [retirement income], he’s not going to be eligible for health-care programs or he’ll have to spend down to essentially $710 a month. He could no longer afford his house. He could no longer afford even the taxes on the house."
The current system has other problems, too. First, there is the ironic class bias that so often accompanies complicated rules. If your caregiver happens to be a University of Chicago professor, you have access to skilled lawyers who can draw up the proper wills and special needs trusts to side-step many official requirements.
Families with less financial or social capital often go without. Others dangerously improvise. Maybe an octogenarian parent leaves all of her money to her oldest son, with an implicit understanding that he’ll use half of these funds for his younger sister. Suppose he gets divorced or misuses the money? How many other ways can this go wrong? Means-testing encourages families to cut corners. Worse, it hinders precisely the long-term planning that every person with a disability and every family should do.
These requirements seem especially strange in the wake of health reform. If you’re on Medicaid because you had a spinal cord injury, you face punishing limitations on your allowable financial assets. If you qualify for Medicaid on the basis of low-income, you don’t face the same limitations. There’s no real justification for this inconsistency. Its one virtue may be that it could prove politically generative, in promoting beneficial reforms. It’s hard to believe that the disability community or the American public will long tolerate this discrepancy.
Things are already beginning to move.
The Achieving a Better Life Experience (ABLE) Act of 2013 provides one example. The ABLE Act was introduced last year, and it’s on the legislative agenda again this year. Identical versions are co-sponsored by seventy senators and by 359 members of the House. Pennsylvania Democrat Robert Casey, Jr. and his Republican counterpart Richard Burr introduced the Senate bill. Representatives Ander Crenshaw, Chris Van Hollen, Cathy McMorris Rodgers, and Pete Sessions introduced the counterpart House bill. It’s amazing to see Senators Bernie Sanders, Jay Rockefeller, Mitch McConnell, and James Imhofe co-sponsoring the same bill.
John Rizzo, press secretary to Senator Casey, told me that he anticipates a vote in the coming weeks. Sponsors are waiting for the Congressional Budget Office to issue a budget score. Once that happens, Rizzo is optimist that the bill can become law in the next few months.
I’m sure ABLE accounts will bring some complicated financial mechanics, but the concept behind them is simple. These allow people living with disabilities to establish accounts similar to the 529 educational accounts that many of us have established for our kids. The balance of these ABLE accounts, and their investment returns, can be used for educational expenses, housing, transportation, assistive technologies, and other basic needs.
For many people, this reduces the need for complicated record-keeping and paperwork. It’s cheaper and easier than the complicated special needs trusts many of us have spent thousands of dollars to create and manage. It provides tax advantages. It legitimates what families are often already doing in less transparent and efficient ways. It doesn’t address retirement and some other key issues, but it’s very helpful.
It’s hard to oppose that, wherever you reside on the political spectrum. As Senator Robert Casey put things over email:
"The best advocates for this bill are the people who are dealing with these challenges like Sara Wolff of Northeastern Pennsylvania. When people like Ms. Wolff, who has Down syndrome, talk about the challenges they face and the dreams they have for their lives it inspires action. Further, Democrats and Republicans have rallied behind the ABLE Act because it is a commonsense approach that uses a proven model--the 529 account."
The decidedly middle-class shading helps to explain this bill’s broad support. The engineer whose youngest son lives with Down syndrome immediately sees the value of an account like this. She also has the cash to put in it.
ABLE accounts are less useful to some of my brother-in-law’s peers. Some come from very poor families. For others, ABLE accounts just come too late. They have outlived their intimate caregivers or at least these relationships. Many live entirely on federal disability benefits and nutrition assistance. Under typical terms in many settings, almost all of these benefits are signed over to the group homes and other facilities in which they live. Residents get to keep $50 per month for all of their discretionary expenses from dental visits to the occasional tee shirt, movie ticket, or McDonald’s hamburger.
Here in Illinois, 23,000 children and adults are somewhere on the long waiting list for in-home services, residential placement and other services. These families require more generous benefits more than they need 529-style accounts. And that’s a heavier financial and political lift. Others live in states with other difficulties. Rizzo notes that Senator Casey has encouraged Pennsylvania to embrace the Affordable Care Act’s Medicaid expansion to address poverty-related issues more effectively.
Although more remains to be done, the ABLE Act promises to be a humane and valuable contribution to public policy. In an era disfigured by mean-spirited and polarized gridlock politics, this is no little thing.
MC Live: A Special Evening of Comedy Benefitting organizations in the Jewish community supporting individuals with disabilities
Jewish Community Center of Greater Washington (JCCGW)
MC Live is a new event collaboration hosted by eight organizations within the Jewish community whose passion is providing a quality of life to individuals with disabilities. All proceeds from the event will benefit: Friendship Circle, Jewish Community Center of Greater Washington, Jewish Foundation for Group Homes, Jewish Social Service Agency, Matan, RespectAbility, Sulam, and Sunflower Bakery.More information/http://mclivecomedy.blogspot.com/?utm_source=WhatCounts+Publicaster+Edition&utm_medium=email&utm_campaign=Good+news%2c+fellows+wanted%2c+comedy+night+and+more!&utm_content=More+information
Right on Time? Early Interventions and Initiatives for Promoting Employment
A Mathematica Issue Forum and Webinar
Over a million individuals under age 40 receive Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) benefits. Federal and state vocational rehabilitation (VR) agencies offer unique opportunities for early intervention services to individuals with disabilities, including youth and young adults who are transitioning from school to work, to help them enter, re-enter, or remain in the labor force and reduce their reliance on disability benefits.
More information/http://www.disabilitypolicyresearch.org/Forums.asp?utm_source=WhatCounts+Publicaster+Edition&utm_medium=email&utm_campaign=Good+news%2c+fellows+wanted%2c+comedy+night+and+more!&utm_content=More+information
Mathematica Issue Forum and Webinar
Right on Time? Early Interventions and Initiatives for Promoting Employment
Thursday, May 8, 2014
11:45 a.m.–1:30 p.m. ET
Mathematica's Washington, DC, office
View a video about the upcoming forum.
To attend via webinar, register here.
Over a million individuals under age 40 receive Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) benefits. Federal and state vocational rehabilitation (VR) agencies offer unique opportunities for early intervention services to individuals with disabilities, including youth and young adults who are transitioning from school to work, to help them enter, re-enter, or remain in the labor force and reduce their reliance on disability benefits.
At the same time, policies and initiatives have been evolving to promote competitive employment opportunities in which people with disabilities work alongside people without disabilities for at least minimum wage (integrated employment). Efforts are underway in several states to increase integrated employment among individuals with intellectual or developmental disabilities (IDDs), for whom employment rates are consistently low.
Join us for a disability policy forum, where a distinguished panel of speakers will discuss:
How timely VR service receipt affects the subsequent application to and receipt of SSDI and SSI
New statistics on employment and SSA benefit receipt for youth ages 16 to 24 who applied for VR services, including the variation across states
Barriers that have hindered states’ progress toward expanding integrated employment among individuals with IDDs
Lessons learned that can help states advance their efforts to transform their employment service systems
The expert panel:
Noelle Denny-Brown, Mathematica
Todd Honeycutt, Mathematica
Jody Schimmel Hyde, Mathematica
Jade Gingerich, Maryland Department of Disabilities (Discussant)
Please note: in-person check-in and lunch begin at 11:45 a.m. The program begins at 12:00 p.m. In-person guests will be required to sign in and present a photo ID.
2014 State of the Science Conference - Presentations By Penny Gould
This State-of-the-Science conference will showcase research from three NIDRR-funded employment rehabilitation research and training centers. A common theme underlying these RRTCs is a commitment to conducting research that enhances the scientific evidence to reduce the employment gap between people with and without disabilities. These RRTCs contribute to addressing this theme in three different ways:The Rehabilitation Research & Training Center on Evidence-Based Practice in Vocational Rehabilitation (RRTC-EBP-VR) provides practitioners with knowledge and tools for evidence-based vocational rehabilitation practices to improve employment rates and quality of employment outcomes within the state/federal vocational rehabilitation system.
The Rehabilitation Research and Training Center on Employment Policy and Measurement (EPM-RRTC) investigates the impact of government policies and programs on employment outcomes and facilitates translation of this knowledge for policy and program administration practices that reduce work disincentives, increase participation in employment service programs and improve coordination between employment services and safety net programs.
The Individual-Level Characteristics Related To Employment Among Individuals With Disabilities Rehabilitation Research and Training Center (IC-RRTC) is utilizing the enormous variation in employment outcomes among people with disabilities to understand which individuals fare relatively well with respect to employment and why to build an evidence base needed to improve strategies and interventions for attaining better employment outcomes for the various subpopulations of people with disabilities.
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RespectAbility
4340 East-West Hwy, Suite 350
Bethesda, MD 20814 United States
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