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Tuesday, May 3, 2016

The ALS Association 2016 Clinical Conference

The ALS Association 2016 Clinical Conference call for presentations and posters is now open. Submissions will be accepted until May 27, 2016.  

This conference will be a two-day clinical conference for allied health professionals, clinic coordinators, practice administrators and social workers.  

The conference will focus on exchanging information on best practices and emerging trends in ALS care.  Updates on adaptive technologies, respiratory devices, options for augmentative communication, end-of-life, psychological and allied health issues will also be featured.

Intended inference participants include speech language pathologists, social workers and counselors, nurses, assistive technology specialists, physical and occupational therapists, respiratory therapists, dietitians, physicians, and research coordinators.  

We welcome abstracts for platform (speaking) presentations of a variety of ALS-relevant topics: innovative approached to clinical management, potential solutions to challenges faced by people living with ALS, family/caregiver support and outreach strategies.  Individual speakers, panel discussion, and research updates are welcome.  Speakers should plan on a 30 or 30 minute time slot.  All accepted speakers and poster presenters will be offered complimentary registration for the conference.  

Suggested topics for the 2016 Clinical Conference (please note these are only suggestions. We welcome ANY ALS Clinical Submission)

The Disease
Introduction to ALS
Physical Activity for People with ALS
Genetics in ALS

Research and Clinical Trials
Clinical Trials in ALS (past, present, future)
National ALS Registry

Clinical Management
Adaptive and Assistive Technology
Outreach programs to Underserved Areas
Nutrition Management and PEGs
Genetic Counseling and Testing
Palliative Care and Hospice Services
Cognitive and Behavioral Assessment and Management
Respiratory Decisions and Options Along the Journey
Symptom Management
Driving Issues
Psychosocial Issues in ALS
Quality of Life Issues
Issues of End of Life Care
Communication Challenges and Strategies
Multidisciplinary Teams
Scientific Investigation of Alternative Treatments
Mobility and Activities of Daily Living
Diagnosis and Management of ALS/MND in Spectrum in Clinic
Speech and Swallowing Interventions and/or Techniques

Social Work Practices and Programs
Support for Children, Teen, and Young Adults
Assessing and Meeting Caregiver Needs
Intimacy and Spirituality in ALS
Advanced Planning
Care Management and Professional Boundaries

Insurance and Financial Resources
Financial Issues – Health and Life Insurance Resources
Funding for Assistive Technology
How to Ensure that Insurance Overs Prescribed Durable Medical Equipment
Updates on Medicare Changes
Skilled vs. Custodial Home Healthcare coverage – Medicare/Medicaid/Private Insurance

Supporting Professional Caregivers
Preventing Professional Burnout and Compassion Fatigue
Energize and Revitalize – Remaining Positive at Work
Maintaining Work/Life Balance


Full details about the conference can be found in the official flyer:




Wednesday, September 30, 2015

Neural Implant Enables Paralyzed ALS Patient to Type Six Words per Minute

By Eliza Strickland
Posted

Photo: Stanford University/Nature Medicine
A paralyzed ALS patient uses a brain implant to steer a computer cursor to various targets.

Typing six words per minute may not sound very impressive. But for paralyzed people typing via a brain-computer interface (BCI), it’s a new world record.
To pull off this feat, two paralyzed people used prosthetics implanted in their brains to control computer cursors with unprecedented accuracy and speed. The experiment, reported today in Nature Medicine, was the latest from a team testing a neural system called BrainGate2. While this implant is only approved for experiments right now, researchers say this demonstration proves that such technology can be truly useful to quadriplegics, and points the way toward regular at-home use.
The two people who volunteered for this study have amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, a degenerative neural disorder that leads to complete paralysis. Lead researcher Jaimie Henderson, co-director of Stanford’s Neural Prosthetics Translational Lab, calls it a “humbling experience” to work with quadriplegic patients who willingly undergo brain surgery and devote themselves to science experiments that will push forward this early-stage technology. “They’ve become true partners with us in this endeavor,” Henderson says.
The BrainGate2 system consists of an array of minuscule electrodes implanted, in this case, in a region of the motor cortex known as the “hand knob.” The electrodes record the patterns of electrical activity in the neurons there, which fire when the person either moves or imagines moving their hand. The BrainGate2 system also includes decoding software, which turns a messy signal into a clear command for an external device—in this case, a computer cursor. Other experiments have used BCIs to control robotic arms, and they could theoretically be used to control wheelchairs, cars, or anything else that can be moved by remote control.
In this study’s first task, the participants repeatedly moved their cursors to targets on a computer screen (see video below), which they accomplished by imagining their index fingers moving on computer trackpads. They each averaged about 2.5 seconds per target. This is a significant improvement over a previous BrainGate2 trial, in which a different patient performed the same task but averaged 8.5 seconds per target.

The improvement, Henderson says, came from four factors.
1) The system architecture provided faster processing than before. With a lag time of only about 20 milliseconds between the user’s thought and the cursor’s action, the participants got useful feedback while doing the task.
2) Signal processing filters carefully extracted the neural signals from the ambient electromagnetic noise—a necessity, as these experiments were conducted in the volunteers’ homes.
3) The imagined motion that the participants ultimately used to control the cursor (an index finger moving on a trackpad) provided a clearer neural signal than other imagined motions they tried out (whole arm and wrist movements).
​4) Perhaps most importantly, an improved decoding algorithm was better able to translate neural signals into intended movements. Essentially, it was better able to identify the direction the user intended to steer the cursor, and could therefore correct for deviations in the neural signal that would have otherwise steered the cursor off track.
But what about the typing, you ask? For that task, the participants used the same imagined finger movement to pick out letters in a text-entering program called Dasher. With this interface, once the user selects a letter, the program predicts which letters are likely to come next and makes them easier to select, speeding up the construction of words.

One of the participants typed 115 words in 19 minutes, or about 6 words per minute. That user had previous experience with the Dasher interface using a different control method, but it’s still a pretty impressive result. While this participant is still able to talk naturally, such a communication method could benefit people who have lost the ability to control their mouth muscles, such as people with more advanced ALS or “locked-in” patients.
Henderson and his colleagues have previously surveyed people with paralysis to see whether they’d be eager to adopt BCI technologies in their everyday lives, and what capabilities they’d hope to gain from such gear. High on the wish-list was the ability to communicate easily through fast typing, which the survey defined as 40 words per minute.
Henderson says he has plenty of ideas for how to reach that ambitious target. A future study might make use of electrodes implanted in a region of the brain that encodes a person’s intentions to move, before they actually make a motion. “We want to see if using those signals from the planning part of the brain helps improve performance,” he says.
It’s not clear what level of performance will be required before an implanted BCI device is considered ready for domestic use. But Henderson thinks the BrainGate2 system is well on the way: “We think we’re making very good progress,” he says.   

Monday, September 28, 2015

With the Movement of an Eyebrow, Als Patient O’brien Has Won Awards

For some 10 years, using just his eyebrows, Leonard Florence Center For Living (LFCFL) resident Patrick O’Brien – who has ALS and cannot move anything but his eyebrows – worked away at creating what he hoped would be his greatest masterpiece on film.
A filmmaker before getting ALS, he was inclined to document the entire process of the disease’s progression, and did so quite well.
As the disease progressed, though, it became harder for him to work on the film. Several editors had helped him with the project, but nothing seemed to take the nearly-finished film from good to great.



Then, by coincidence, Documentarian Doug Pray entered the picture, and he and O’Brien formed a team that finally got the film out to the world.
And the world has loved it.
With O’Brien and Pray working together, ‘Transfatty Lives’ was born, and now the film is garnering awards from New York City to Milan. Earlier this year, O’Brien’s film won the Tribeca Film Festival in its category, and just this past Sunday it won the Audience Award at the Milano Film Festival in Italy.
“What a long, strange trip it’s been,” said O’Brien this week over e-mail. “The movie almost didn’t get finished. It was by luck that our composer, Bradford Reed, bumped into filmmaker Doug Pray one night at a party. Doug watched a rough cut of the movie and wrote a six-page letter to me about how to fix my movie, then titled ‘Everything will be okay.’”
His letter came just in time, O’Brien said.
“I had been trying to make the movie work for eight years at that point, and the film needed some fresh eyes,” said O’Brien. “I had been working with a writer and editor named Scott Crowningshield at that stage. It was good, the film, but not great. It had to be great. I had been documenting my life with ALS since the beginning, and it was going to be great. It just needed the right touch. Thank God for Doug Pray, who agreed to come on as a producer. It was good that Doug came onto the scene at that point in time, because by then I had experimented so much with my cokamayme ideas.”
Pray said in a telephone interview this week that he is incredibly honored to have worked with O’Brien.
“By the time I met Patrick, he had grown very frustrated and realized this had to be the last big push for his movie,” said Pray. “You can only keep reforming and editing movies for so long. I think we all felt that energy…The film did need help. It was beautiful, but needed help. It was like a wonderful painting that needs a frame. It was so powerful, funny, weird and artsy. No one was going to see if we didn’t make the push and take this on, and the potential for the film was enormous.”
Pray said O’Brien had gathered all of the footage – years of footage – and had compiled it for quite some time. The trick was to edit all of the raw footage into a great accounting of what O’Brien went through in his ALS journey – a journey that included lying motionless for several years in a Baltimore nursing home, only able to stare at the ceiling.
Once arriving at the LFCFL, the technology and enormous improvement in his quality of life at the facility’s ALS Green House, allowed him to continue his work and to be a key decision maker and director in the editing of his film.
Once again, O’Brien did that without the use of any of his body aside from the movement his eyebrows.
“As filmmakers, we are fussy with our own work, and I can’t imagine what it must have been like for Patrick to be locked in a bed in Boston, not able to move, while these other people all over the place are working on his film,” said Pray. “However, the degree to which he was able to give input and guide us and direct us about where he wanted the film to go is simply remarkable and amazing especially when you consider his situation. I’ll never forget this experience.”
Pray also said O’Brien’s story about winning Tribeca and Milan – and being able to travel to the Tribeca Festival for his premiere – is a feather in the cap for the LFCFL.
“It says a lot about the Leonard Florence that they allow people to be themselves and let people live lives that are meaningful – even when they’re paralyzed,” he said. “They supported this whole thing, even getting Patrick down to New York, which wasn’t easy. He couldn’t have done this without the technology available and support of that facility. He couldn’t have done this at a regular nursing home facility. That says a lot about Leonard Florence. It’s not normal; it’s special.”
The film is not yet available for public viewing due to the fact that it is still in the Film Festival circuit. It will be premiered in Los Angeles later this year, and will have a Boston premiere some time next year, O’Brien said. However, he said people can visit TransFattyLives.com for more information and to view a trailer.
The LFCL features neurological specialty residences with cutting-edge assistive technology, allowing individuals with ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease) and MS (multiple sclerosis) to receive skilled nursing care in a nurturing home environment. The 7th annual ALS & MS Walk for Living, a fundraiser to support these individuals as well as the innovative residences, will be held on Sunday, September 27, a
Filmmaker Patrick O’Brien - who has ALS and can only move one eyebrow - with Chelsea Jewish Foundation CEO Barry Berman last week at O’Brien’s home in the Leonard Florence Center for Living. This year’s ALS Walk for Living on Sunday will pay homage to several awards recently won by O’Brien for his film ‘TransFattyLives.'
Filmmaker Patrick O’Brien – who has ALS and can only move one eyebrow – with Chelsea Jewish Foundation CEO Barry Berman last week at O’Brien’s home in the Leonard Florence Center for Living. This year’s ALS Walk for Living on Sunday will pay homage to several awards recently won by O’Brien for his film ‘TransFattyLives.’
t 165 Captains Row on Admirals Hill at 10 a.m.
 
This year Billy Costa of KISS 108 will act as emcee and kick-off the two-mile walk.  Media sponsors include the Independent Newspaper Group; major corporate sponsors include Biogen, M&T Bank, AHOA, Kayem and Clifton Larson. Immediately following the walk, there will be a BBQ hosted by Chili’s, doughnuts provided by Dunkin Donuts, face painting, live dance performances, a petting zoo, a photo booth and a raffle. There is a $10 donation fee to participate in the Walk, which includes a Walk for Living tee shirt, the BBQ and all the activities. The Walk for Living is one of the few walks that are dog-friendly.

Wednesday, August 26, 2015

CSUF News Service

Student Research for ALS Patients

User-Friendly Prototype Helps People Communicate Online

ALS Interface TrialStudent David Diaz tests an electronic communication system with the help of alumnus Dean Zarkos, which would allow him and other ALS patients to use a computer using thoughts, facial expressions and head movements.
Computer engineering major Krystle Ilisastigui hopes her efforts to help develop a high-tech communication device will improve the quality of life for those with amyotrophic lateral sclerosis, or ALS.
Ilisastigui and several of her classmates are developing an electronic communication system to enable ALS patients to access the Internet and communicate via email, text document, chat or Skype using thoughts, facial expressions and head movements, said Kiran George, associate professor of computer engineering.
George and his students have worked on the prototype since February — supported by a $100,000 grant from the Oakland-based Disability Communications Fund — and partnered with the ALS Association Orange County Chapter to fine-tune the technology and design.
This summer, the communication device was tested with the help of patients at the chapter's Tustin office.
"I have 100 percent faith in you," said Cal State Fullerton alumnus Dean Zarkos, diagnosed with ALS in 2011, as students placed a wireless headset on him.
With the device, patients like Zarkos — who uses a motorized wheelchair and is unable to move his hands, arms or legs — can communicate online with head tilts and facial expressions.
"What they are doing is phenomenal: it's cutting-edge technology. Anything that can help patients like myself is a tremendous asset for us," said Zarkos '78 (B.A. political science) of Seal Beach, who holds an MBA and law degree and owns a property management business.
"I can see it opening up the world for people like me. You can do email — communicate with anybody. These students make me proud to be a Titan."
ALS, commonly known as Lou Gehrig's disease, is a progressive neurodegenerative disease. An estimated 75 percent of ALS patients lose their ability to speak, along with use of their hands, said George. Speech problems are progressive, and most will experience a severe breakdown in their ability to communicate with others, he added.
"Patients face tremendous barriers that make electronic communication a challenge. This inability to communicate is equally frustrating and emotionally devastating," George added. "But this device will help them to engage in electronic communication and allow them to stay connected to friends and family."
What is most appealing about the technology is that the device is user-friendly, requires minimal training and is low cost, observed Jared Mullins '04 (B.A. political science), executive director of the ALS Orange County Chapter.
The wireless communication system utilizes commercially off-the-shelf components to minimize design time and cost, George explained. The goal is to keep the device's cost under $150.
While the project allows students to apply what they learn in class and put it to practical use, it also is an eye-opening experience in seeing how their work could help ALS patients regain control of simple tasks.
"It's been challenging and a great learning experience for us to work directly with the patients," said graduate student David Diaz. "It's real hands-on — something you are not going to get in the classroom."
Fellow graduate student Aaron Castillo added that one of the biggest challenges has been to personalize the device to meet patients' needs as the disease progresses.
"We're going to give this project everything we have; we just want to help," Castillo said.
George and his students also are working on other brain-controlled systems for ALS patients, in which thoughts and expressions can be used to control a robotic arm and electric wheelchair.
For more photos, visit online
- See more at: http://news.fullerton.edu/2015su/ALS-research.aspx#sthash.VTDHjMjP.dpuf

Friday, July 31, 2015

AT&T awards $100K for tech to help people with disabilities

Twenty-five years after President Bush signed the Americans with Disabilities Act, AT&T called on developers to use existing technology to create solutions for people with disabilities.

kinesic-mouse.jpg
Jason DaSilva, a documentary filmmaker who has multiple sclerosis, has been working with developers on Kinesic Mouse, software that allows him to control his PC hands-free by using a 3D camera that detects facial expressions. CNET/Marguerite Reardon

To mark the 25th anniversary of the Americans with Disabilities Act, AT&T teamed up with New York University's Ability Lab to challenge app developers to use their network and technology to make life easier for people with disabilities.
Together they launched the Connect Ability Challenge, designed to spur innovation for people with physical, social, emotional and cognitive disabilities. Winners of the contest, which saw a total of 63 submissions, were announced Monday.
In total, AT&T awarded $100,000 in cash. That included a $25,000 grand prize for Kinesic Mouse, software that uses Intel's Real Sense Web camera to detect facial expressions and head rotations, enabling people to operate their personal computers hands-free. Other winners include a smartphone app to help visually impaired shoppers find their way around a store using existing beacon technology, and one that uses Bluetooth to connect sensors to a smartphone preprogrammed with stock phrases to enable nonverbal individuals to push a button to communicate basic needs.
The ADA, signed into law on July 26, 1990, was monumental legislation intended to ensure that people with disabilities could participate fully in the workforce and their communities free from discrimination. The most visible legacy to the law has been the changes in infrastructure from cut-outs in sidewalks to ATMs marked with Braille to widespread closed captioning to fire alarms that can be seen as well as heard.
But advocates for people with disabilities say more needs to be done, as many disabled Americans still find it difficult to participate meaningfully in their communities. Technology, including AT&T's efforts to encourage more development in this area, can help bridge the gap between public policy and real life, said Marissa Shorenstein, president of AT&T New York.
"The promise of the Americans with Disabilities Act was to remove barriers that people with disabilities face. It's clear from these extraordinary submissions that technology can play an important role in fulfilling the law's mission," she said. "The winning solutions address specific challenges that prevent people with disabilities from participating fully in our society. We hope that this unique competition spurs further innovation in this area and highlights how much mobile technology can improve people's daily experiences."

The contest

The purpose of the contest was to challenge developers to use off-the-shelf technology already in existence to help solve problems for people with disabilities. While the ADA helped pave the way for an entire industry dedicated to assistive technology, the products developed have primarily been tailored to niche audiences and have been expensive. AT&T's vision for the contest was to encourage developers to use mainstream technology, such as smartphones, tablets, voice-recognition software, Web cameras, and 4G LTE wireless networks, to create affordable apps and software.
"The beauty of the contest is that the solutions the developers came up with are super simple, affordable and use technology, like the Android and iOS operating systems, that everyone is already using," said Neil Giacobbi, executive director for public affairs for AT&T. "The truth is that people with disabilities are already using this technology -- just like everyone. So why should they have to use a separate device to get the help they need in their everyday lives?"

Putting it all together

To find out what solutions people with disabilities were looking for, AT&T enlisted the help of four people to consult with the app developers participating in the contest.
For Gus Chalkias, who is blind, that meant sharing with developers his deepest anxieties about going out in public on his own.
"For me the biggest issue I face when going somewhere new is just figuring out where everything is," he said. "I usually have to ask for help, which I'm very willing to do. But it would be nice to not have to ask a stranger where the bathroom is."
The developers at Enlight, which won a $10,000 prize for the "Best Solution Impacting Policy and Society," created a smartphone application that leverages existing iBeacon technology in stores and other public places. The app enables people who can't see to scan their surroundings with their mobile devices to help them navigate.
For Jason DaSilva, an Emmy-nominated documentary filmmaker who was diagnosed with multiple sclerosis a decade ago, the Kinesic Mouse software -- which won the grand prize -- allows him to control his PC completely hands-free, using Intel's Real Sense 3D camera that detects facial expressions and head rotations. With a tilt of his head or a pucker of his lips, he can control the PC, joystick or keyboard, helping him regain some independence that had been lost to the disease.
Multiple sclerosis is an unpredictable, often disabling, disease of the central nervous system that disrupts the flow of information within the brain and between the brain and the rest of the body. Over the years, DaSilva has lost the ability to walk and to dress himself. As of about nine months ago, he lost control of the motor function in his hands necessary to work a mouse and trackpad on his computer, which he uses to edit his films. He said he has been forced to rely on his assistant to click his mouse during the edit process as he dictates editorial direction.
DaSilva said the process of relying on a middleman to operate the computer's editing tools has helped him become a better film editor and director. But he admitted the added step is hugely time consuming. Using the Kinesic software, he's learning how to make those edits on his own again. He's also able to check email and browse the Internet without the help of someone else.
"All of a sudden, I'm regaining some independence," he said. "It's huge. It's a small thing that helps make life more normal for me. And it makes me more productive."
While other software exists that offers similar functionality, DaSilva said Kinesic Mouse works better than anything else he's tried. And it costs less than most other solutions. Markus Proell, founder of Kinesic Mouse, said his solution adapts software and hardware originally developed for gaming. As a result, Proell said his solution, which costs about $400, is priced far below that of software created specifically for the special-needs community.
In fact, he said, the cost of the software is so low, some customers in the US may not be able to get it covered by federal Medicaid insurance, which typically picks up the bill for assistive technology for people who have disabilities.

Only the beginning

AT&T's Giacobbi said that the technology industry is still in the early days of figuring out ways to leverage existing technology to help people. As mobile technology becomes more pervasive and less expensive, he said it will also be easier for developers to create solutions for people with disabilities. And he said that AT&T hopes it can encourage developers to innovate and create solutions for this underserved group.
"It doesn't take a computer scientist to realize that something like a fitness tracker with GPS could be used to help someone with a disability," he said. "We've just scratched the surface in terms of using existing technology to help people with disabilities."

A bionic hand in five days: how tech innovation is changing lives


Assistive technology is giving disabled people more control over their lives, but businesses and charities have a long way to go on accessibility and affordability
Bionic hand
Nicky Ashwell is the UK’s first patient to receive a lifelike bionic hand. Photograph: Laura Lean/PA Wire
For those who need it, a bionic limb can cost up to £80,000 and take three months to make. However, by using 3D scanning and printing, a Bristol-based start-up reckons it can provide an amputee with a bionic hand for less than £2,000 in less than a week.
Using the latest in advanced robotic prosthetics, Open Bionic’s prototype hands generate movement in the fingers in response to electrodes connected to muscles in an amputee’s arm.
“It’s an intuitive way to operate the hand and it give them (amputees) back a freedom of movement that they had previously lost or were born without in some cases”, Joel Gibbard, the company’s founder, has said.
A winner at the recent Tech4Good awards, Open Bionics’ prototype is emblematic of a gradual, but burgeoning interest in how new technologies can help meet disabled people’s needs.


So-called assistive technology has the potential to “transform the level of dignity and independence that disabled people experience in their everyday lives”, argues Constance Agyeman, manager of theInclusive Technology Prize at the independent charity Nesta.
Despite emerging interest in this space, however, current solutions are frequently expensive, unattractive and too narrowly-focused, adds Agyeman. “The feeling from a range of disability network organisations is that a lot of the big manufacturers are very much tied to the healthcare sector… which means there is a limited range of assistive technologies for disabled people to access.”

Increasing the pace of innovation

In an attempt to broaden the scope of assistive technologies currently available, Nesta awarded £10,000 to each of the 10 finalists of its prize to bring their ideas to market. The list includes a free-to-use communication aid, an “evolvable” walking aid, a one-handed lap belt for wheelchair users and a hearing loop listening app.
In a similar competition last year, Google recognised – among others – a network of volunteers who use 3D printers to provide prosthetics for free. The e-NABLE community received a $600,000 grant to advance its work. In a UK version of the competition, RNIB, the charity for the blind, won an award for its development of “smart glasses” that improve the sight of individuals with limited vision.
According to Agyeman, “Unless you have a deep understanding of what it means on a day-to-day basis to experience what a disabled person is experiencing, it’s very difficult to cater to those needs.”
Virgin Media seems to have taken that message on board, this week launching a £1m partnership with disability charity Scope. The partnership, which marks a paring down of Virgin’s 27 different charity relationships, will see experts from Scope working alongside the company’s internal innovations team.
The alliance will build on existing trials of assistive technologies undertaken by the company over recent years, such as a bluetooth-enabled system that automatically tracks and records the vital health stats of individuals with conditions such as hypertension, obesity and diabetes.
The funding will also help Scope disseminate information and training around assistive technologies it is using in the four specialist schools it currently runs. Examples include “switching devices”, which enable computers, tablets and other learning equipment to be controlled by everything from eye movements to hand gestures.
“There is always more tech companies like us can be doing,” says Katie Buchanan, head of sustainability at Virgin Media. “Technology is moving quickly, so I think we have a role to play to help [disabled] consumers as well as charities to keep up with that pace of change.”
According to Scope, 27% of disabled adults have never used the internet, compared to 11% of non-disabled adults.

Making the right technology

For Jaime Purvis, an expert in screen-reading software at the Digital Accessibility Centre, a non-profit working on digital inclusion, the tech industry needs to move faster on assistive technology.
“There’s more being done now than three or four years ago, but it’s still not as widespread as it could be … There are a lot of [disabled] people being left behind because they don’t have access to the hardware that tech companies are creating,” he says.
Making the tech industry aware of the “huge market potential” for inclusive assistive technologies would help galvanise activity, he suggests. It’s an argument disability charities are increasingly comfortable with, according to Tamsin Baxter, head of partnerships at Scope.
Baxter cites the final report of the independent Extra Costs Commission, published in June, which puts the spending power of disabled people in the UK at £212bn per year. Individuals with physical impairments, for example, incur disability-related costs of almost £300 a week, the report states.
“With 53% of households in the UK having a connection with or being touched by disability, it’s not a niche group [so] there’s real value in seeing disabled people as a group of consumers,” says Baxter.