Winter 2016: Powerful Partnerships

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A conversation on building transformational partnerships with Carolyn Phillips

 
This past fall, AT Program News had the good fortune to talk with Georgia Tools for Life (TFL) Director and Principal Investigator Carolyn Phillips about TFL's work partnering with Georgia's Division of Aging Services. The plan was to include an article about their new Assistive Technology (AT) Solutions Lab at the Coastal Georgia Aging and Disability Resource Center [ADRC], as well as the deployment of portable AT toolkits to additional ADRCs for improved statewide outreach. AT Program News was dedicating two editions on AT for Aging to spotlight the urgency of population aging and the pressure it will soon exert on the national field of state AT Act programs. The conversation with Phillips, however, quickly became as much about how partnerships are cultivated as it was about those projects. The result is this winter edition focused on partnerships in the AT sphere!
Logo for Georgia Tech: Tools for Life. Georgia's Assistive Technology Act Program.
Phillips can't help but talk about nurturing program development; she sees opportunity everywhere. She’s been director of Tools for Life for 12 years and with the program for nearly 20 years. She has also served as director of the National Pass It On Center (PIOC), providing technical assistance to the national field of AT Reuse programs, since 2006. Learning from and working with Joy Kniskern, Christopher Lee, the TFL Team, the TFL Advisory Council and TFL Network, she helped steward the growth of Tools for Life from a program nested within Georgia's Dept. of Vocational Rehabilitation to its current location within Georgia Tech's Accessibility Solutions and Research Center (AMAC) within the College of Architecture. Networking for so long within the public and private sectors, and embedding TFL within AMAC's resources and services, Phillips and the TFL Team have created something of a snowball effect on ideas and partnerships. Their recent collaborations with GA's Division of Aging Services serve as an example of how initiatives lead one to the next at TFL.
 
ATPN: How did your work with the Division of Aging Services begin?
 
Phillips: Since Tools for Life first received funding. We’ve always had a representative from the Division of Aging Services and we did AT trainings with the Area Agencies on Aging [triple As] and ADRCs. But what we couldn't figure out was how to get them to have a real working knowledge of AT. That was the ongoing challenge. Then in 2007 everything began to change; the iPAD hit the market and all of a sudden AT became more intuitive. The App revolution began. The triple As had more interest, and they had more confidence.
 
ATPN: So the concept of AT suddenly had traction?
 
Yes! Because AT had entered the mainstream and also because the failure rate was lower.  (It's far easier to demonstrate Voice Over on the iPAD than JAWs on a computer.) And so when this shift happened, we were ready for it. We’d followed the work of Jane Gay in Iowa, Laura Plummer in Wisconsin and Amy Goldman in Pennsylvania [deploying mobile AT kits], and we'd been keeping an eye on what Judi Lee and Peggy Shirely were doing in ND [with developing an AT for Aging showroom]. So we were ready to move as soon as Aging Services was ready.
  
The other thing that happened was Dr. Jay Bulot was brought on to head the Division of Aging Services. Dr. Bulot wrote his dissertation on Technology for Aging. He understood the transformational impact of technology for Georgians as they age and for persons with disabilities, which meant he wove it into all of his initiatives including enhancing his agency's services and efficiency. He also has a staff that understands the critical link between aging successfully and the use of technology.
 
ATPN: Serendipity!
 
It really was.
 
He started off by improving the agency's website design and web accessibility--which we helped with--and then looked at how to provide services at a distance using Google Hangouts etc. Eventually it was on to providing [AT] toolkits and developing an AT Solutions Lab with us at the Coastal Georgia Aging and Disability Resource Center, an incredible space.
AT Lab at the Coastal Georgia A D R C
AT Lab showing bathroom equipment
The AT Solutions Lab

It took years to build this relationship, but we were poised and we'd been waiting for it. And now it's a relationship that continues to grow.
 
ATPN: It sounds like it helps to have your fingers in everything. Because by helping with web accessibility you gained their trust and went from there.
 
Right, we started by helping with Section 508 compliance [information accessibility] and eventually we were doing an environmental scan of the 12 ADRCs to select 6 to receive AT Toolkits. This was a pilot funded by both Tools for Life and the Division of Aging Services. We chose the ADRCs that were the most geographically isolated from other AT services.
 
In general I'm big on doing pilots. I like to see proof of concept, get buy-in and get the buzz going. That way it's not like this top-down initiative where everybody has to do it this one way. I believe our partners in the community are experts and know their needs and community much better than I do. It's through collaboration that we create a win win situation.
 
ATPN: How did you get toolkit buy-in from the ADRCs?
 
We asked them what they needed. Martha Rust and Rachel Wilson on the TFL Team created a survey to ask about their level of expertise, what AT they believed they needed, and then we customized each of the kits based on what we heard back (beyond a base of equipment essentials). This way the pilot became about them and not us. Then Liz Persaud focused on developing a customized training. We met face to face at the new AT Solutions Lab at the ADRC in Darien (which opened last December). For two days we held a hands-on training there with the staff of the centers receiving toolkits. We talked about AT in general, AT funding, and then went into the kits to show how to use each device [see the ADRC toolkit training PowerPoint]. And now everybody wants a kit! We rolled them out just this summer but all 12 ADRCs already want them. Instant buy-in! Actually both the toolkits and the AT Lab have sparked considerable new interest from a lot of different directions.

ATPN: How has it sparked new interest?

The AT Solutions Lab has become a launch pad for events and trainings and different activities. People are coming from all over the region, which prior to the lab had been significantly underserved.
 
ATPN: So it's not just a showroom for demonstrations.
 
No, we do events and trainings and it's even a working lab. We're beta testing equipment for different developers and companies.  We also demonstrate strategies as well as equipment (such as ways to get out of a bathtub safely). We have folks coming in with their support systems, their OT or CNA or personal attendant--whoever they want--to try the equipment in a safe space.
 
The other big win from all of this is the library system--GLASS. That was unexpected! Not only do the other ADRCs now want toolkits, the library system saw what we did with the ADRCs and now they want toolkits of AT for reading in all the libraries too. They've approached us, and they even have money at the moment, so we're saying let's make it happen! Another bonus--we were able to leverage all the purchasing power through our AT Co-Op and stretch the dollars for all of these AT Toolkits to get more AT and also see a cost savings for our partners. 
 
ATPN: More serendipity?
 
Maybe, but I think the lesson is you have to position yourself to be agile for these moments. That's another reason I love pilots. They allow us to be agile. We can ramp up slowly and not overwhelm our staff. The library system is a group we've been trying to connect with forever and we've worked with them periodically. We've been exploring the concept of using their inter-library loan system for rural device loan delivery (which, I hope, will become a real deal in 2016) and now we have this new toolkits pilot to develop. What will help is we also have a network of talented retired speech language pathologists and occupational therapists ready to volunteer, people who already have a working knowledge of AT. That, by the way, is a national trend which is also an opportunity… tapping retiring professionals.
 
ATPN: It sounds like the secret to your success, in part anyway, is your willingness to lay in wait. You’re not looking around and saying, Well that could never happen here. You’ve studied up and kept a vision for where you’d like Tools for Life to go, and you’re ready to take advantage of the moment when conditions change. Is there anything you would do differently with building partnerships? Any Ah Ha moments along the way to share?
 
The big lesson learned, I think, is making sure that we take very, very small bits of information and that we move with their learning style but also with their pace. I think in the assistive technology world we know so much more than we realize and we have a tendency to overwhelm and that shuts down the conversation. So making sure there are small victories--they need to be small--and creating real champions by encouraging them, builds that confidence. There's definitely a mentoring piece that has to happen. At the toolkits training we were able to say about the equipment, This was your idea! Great job! And then they are like, Wow, I came up with a great idea! Which is true. Because they did. And it's how we see it, too. Because our relationship is definitely an exchange. Our success is linked to each other. This is a transformational relationship--not transactional.
 
ATPN: You mean they think of things you don't, because they have particular clients in mind, which is where it all comes from…
 
In fact, our relationship with the ADRCs is turning our whole approach to AT for dementia much more practical--it's amazing how much so. Because they were implementing AT strategies all along, they just didn't call them that. For example they use fidget tools to keep someone's hands distracted, which helps with wandering because now the person is sitting down and doing something with their hands.
 
ATPN: I can see that. With your Georgia Tech AMAC partnership you can be pretty high tech. But they've brought you back to the simple tools.
 
So now we're again doing all these low-tech make and takes, including at the Home and Community-Based Supports conference in DC. That's another direction the AT Solution Lab has taken us, we're on the road nationally with this lab participating in entirely new venues. We've partnered with the AT Programs in Washington state, California, Illinois, and Florida to design and help us work in the Labs. 
Shows a pencil pierced through a tennis ball, a key augmented with moldable plastic, and a pencil augmented with moldable plastic.
"Make and takes" on display at the Home and Community-Based Supports Conference
 
Another effect has been to move us into the whole space of AT for Mental Health, growing out of this focus on dementia. These partnerships push us in new directions we can’t always predict. That’s also the nature of AT. I love it.

ATPN: Thanks for sharing your wisdom Carolyn!
 
Be sure to check out "AT Lab Highlights from WATAP and Tools for Life," from the Fall 2015 ATPN edition, if you missed it.

News from the Field: Partnering for Emergency Preparedness


Pennsylvania and California report on recent initiatives and successes

Pennsylvania's Initiative on Assistive Technology
Pennsylvania's Initiative on Assistive Technology (PIAT) has a long history of developing nationally-relevant policies, programs and practices that enhance emergency preparedness, response and recovery for persons with disabilities. Recently, PIAT--a program of the Institute on Disabilities at Temple University-- partnered with the Pennsylvania Department of Health to help improve practices for all aspects of emergency planning for individuals with disabilities, and especially those who use or need assistive technology (AT) and/or durable medical equipment (DME). 

One important outcome of this partnership was the creation of a Durable Medical Equipment and Assistive Technology Plan to support the needs of the community during an emergency or mass care event. PIAT developed the plan to help ensure that persons who use DME and AT are not turned away from general population shelters and inappropriately placed in more restrictive environments--such as medical or "special needs" shelters--when their shelter needs may be met through the deployment of DME and AT. 

The plan was created as a dynamic document (for continuous improvements and updates) and will be utilized by the American Red Cross, the Pennsylvania Department of Health, and the Pennsylvania Department of Human Services. It provides information on a range of devices that may be selected when preparing DME and AT caches. It includes considerations for making selection decisions, for procurement, and for maintenance of a cache. Additionally, it includes key considerations for transporting DME and AT to strategic locations, for accounting for equipment during a mass care response, and for returning equipment to the provider as necessary.

In developing the plan, PIAT recognized the importance of involving key stakeholders and made sure to identify DME and AT vendors as well as service providers who may be of assistance during an emergency.

Programs interested in reviewing this emergency-response DME/AT plan and/or learning more about the collaboration that led to it may contact PIAT Program Coordinator Jamie A. Prioli. Also check out PIAT's and the Institute on Disabilities Emergency Preparedness web page.

Ability Tools: Assistive Technology Network California's Tech Act Project

This fall, Ability Tools collaborated with state partners to quickly provide survivors of Northern California wildfires with the assistive technology (AT) and durable medical equipment (DME) they needed. Partners included the California Office of Emergency Services, the American Red Cross, FEMA, Independent Living Centers, Portlight Strategies, and reuse centers in Northern California.
 
Teresa Favuzzi, Executive Director of the California Foundation of Independent Living Centers (CFILC)--the parent organization of Ability Tools--is a member of California’s Functional Assessment Service Teams (FAST). Teresa was deployed to the Napa County shelter to assess the needs of fire survivors with disabilities. There, she discovered individuals in need of a variety of assistive technologies that were abandoned during frantic evacuations.

According to Ability Tools Program Director Kim Cantrell, the coalition worked together to find, secure and provide both new and used assistive technology. “Ability Tools provided approximately $14,200 worth of AT and DME to people displaced by the fires, including power wheelchairs and scooters, walkers, canes and bathroom equipment. This includes $6,000 we raised to purchase new AT when a gently used item was not appropriate or available.” 

In 2014 Cantrell formalized Ability Tools’s partnership with the Office of Emergency Services through a Memorandum of Understanding (MOU) for providing gently-used equipment and device loans to persons affected by disaster. The MOU, however, is far from their entry point to engagement with disaster preparedness and response. Through CFILC, the program has a long history with emergency preparedness in a state that has led the nation with crafting disaster response strategies and practices. The quick and effective response to the Northern California fires was, in fact, years in the making.

“Functional Assessment Service Teams began in California in 2008,” Cantrell explains, “the brainchild of June Kailes, an emergency preparedness advocate. Their mobilization was led by CFILC, which, in 2007, created Access to Readiness, a coalition focused on building an infrastructure responsive to the service needs of individuals with disabilities after disasters.” CFILC and the Access to Readiness Coalition advocated for the implementation of the FAST concept and also the creation of an Office of Access and Functional Needs (OAFN) within the California Emergency Management Agency (now OES). “Both FAST and OAFN now serve as national models.” 

After the Access to Readiness Coalition disbanded, CFILC and Ability Tools remained engaged with California OES, eventually building off that relationship to bolster the infrastructure that responded to the Northern California Valley and Butte fires. That engagement has paid off. Impressed with the speed and effectiveness of the Northern California fire response by disability-serving organizations, FEMA recently provided a webinar on how disability organizations in California can get more involved with long-term disaster recovery. Over 30 disability-serving organizations attended to learn more. 

Reflecting on California’s role and history with disaster preparedness, Cantrell remarks, "I was excited when I heard the emergency preparedness discussion at the Catalyst conference in DC [last August]. I knew California had a lot to do with how far we have come to meet the needs of persons with disabilities during disasters."

VOCALiD Wants You!

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A mission-driven assistive tech startup is putting a new twist on the concept of the "public/private" partnership

Heard of VOCALiD yet? If you haven't, and you work with or use speech generating devices (SGDs), likely you will soon. VOCALiD is the AT startup founded by a speech scientist that is raising the bar on what synthesized speech could and should accomplish for individuals with complex communication needs. It's creating and deploying new technology, along with an unusual crowd sourcing initiative, to advance both the science of synthesized speech and expectations for users. 
Smiling girl and smiling woman. Girl is in a power chair.

VOCALiD Founder
Rupal Patel, PhD
and "trailblazer" Maeve on the day Maeve received her VOCALiD voice

VOCALiD custom-crafts voices that preserve and promote a speaker's "unique vocal identity." The company's patent-pending technology combines the vocal characteristics of a person who has unintelligible speech with a database of speech recordings from a matched donor. The result is a unique, yet familiar, synthesized voice for use with a SGD for clear spoken communication. (Check out this short Huffington Post video.)

To carry out its mission, VOCALiD is banking on the public in two ways. First, company founder Rupal Patel, Ph.D. is betting that enough people with intelligible speech will be inspired to donate voice recordings to make a difference for individuals with complex communication needs. Second, she's literally banking these voices online at the Human Voicebank--a database she's created to serve both her new company and, more broadly, humanity.

First things first: what is a Vocal Identity?

Anyone who is familiar with the robotic voice used by Stephen Hawking or the smooth generic vocal delivery of an ATM or GPS system, can understand the potential impact of VOCALiD's technology. In her  TED Talk Patel quotes Henry Wadsworth Longfellow, "The human voice is the organ of the soul."

Patel was attending an assistive technology conference when she had her "Ah ha" moment. There she observed individuals of different ages using speech generating devices and sounding very much the same. Yet children sound different from teens who sound different from adults who sound different from seniors. Assistive technology, she realized, could do better.

It's not a new complaint. As Spectronics blogger Jane Farrell points out, while there are many new voices created all the time by companies such as Nuance, Acapela, Ivona, and Microsoft, the vast majority are adult male and female voices reflecting different accents and nationalities. Few options exist for children, adolescents and seniors because the voices are mostly created for commercial purposes. Regardless, Patel's point is broader. Generic voices will always be generic; most of us want to sound like ourselves.

A young girl smiles seated in her powerchair facing a monitor and flanked by her two sisters, also smiling.

Maeve and her sisters

The VOCALiD difference

VOCALiD voices are different because they are built off the vowel sounds of a person with unintelligible speech. Preserved in these source sounds are pitch, loudness, and tempo: unique vocal characteristics that help distinguish and announce each individual's identity. Patel refers to these characteristics as a speaker's "vocal DNA."

VOCALiD technology synthesizes custom voices by matching target recipients with voice surrogates of a similar age, gender, culture and other characteristics. Voice-donor surrogates provide several hours of recorded speech which is then blended with the target individual's source sounds.

The effect is a hybrid synthetic voice that sounds as though the target speaker has just cleared their throat and begun speaking more distinctly. In the words of one mother of a VOCALiD voice recipient (quoted in Patel's TED Talk), "This is what William would have sounded like had he been able to speak."


"I started this company based on the premise that there are plenty of people willing to donate their voices to change lives and advance the science. It's our mission to make affordable voices for people who need them."
-- Rupal Patel


Patel is on leave from Northeastern University where she is director of the Communication Analysis and Design Laboratory as well as a professor in the Departments of Communication Sciences and Disorders and Computer and Information Science. Originally she created VOCALiD's technology with funding from the National Science Foundation (NSF). Now she's reinventing herself as a social entrepreneur. "I started this company based on the premise that there are plenty of people willing to donate their voices to change lives and advance the science. It's our mission to make affordable voices for people who need them."

To do so, Patel has new funding to commercialize the technology from the NSF as well as the National Institutes for Health (NIH). She is also working with a select group of "trailblazer" clients recruited by VOCALiD's Indiegogo campaign. Seven trailblazers paid $10,000 and Patel reports they are now in the process of receiving and tweaking their VOCALiD voices. "The response has been overwhelmingly positive," she says, "from the recipients themselves to their families and teachers."  

In this beta phase, clients are users of a range of speech generating devices and apps. VOCALiD is working with the makers of those products and others, including Tobii/Dynavox, Lingraphica, Prentke-Romich, and Speak For Yourself, to ensure its voices work smoothly with their technologies.

In addition to trailblazers, VOCALiD’s Indiegogo campaign has taken 52 pre-orders at the promotional rate of $1,249. Patel says the promotional rate is well below her current costs, but is helping to get the word out about custom voices and the Human Voicebank initiative. VOCALiD will fulfill these orders by late 2016 and Patel emphasizes she has the capacity to take more.

The Human Voicebank initiative

Crowd sourcing voice donations is one way Patel expects to dramatically advance the science while helping ensure VOCALiD is affordable. VOCALiD's Human Voicebank invites any English speaker to donate their voice to make a difference in the life of someone with complex communication needs. All that is needed is time, an internet connection and a headset.

Two young girls seated in front of computer monitors. One wears a headset. One uses a power chair.

Maeve looks on as her sister records her voice donation

"It's exciting," Patel expressed in a recent phone interview. "We have middle schoolers organizing voice drives at their schools and for their Bar and Baht Mitzvahs!"

To fully bank a person's voice, 3,500 phrases must be read aloud, a task which takes the average donor between 5 and 7 hours. It may sound like a lot, but Patel is quick to point out that recording sessions are broken up. "Donors record in 15 or 20 minute blocks. Voice drives are a lot like running clubs; participants motivate each other."

The company's goal is to collect 100,000 registered voice donors by 2020So far 10,000 individuals have initiated voice donations at the site and roughly 1,000 have completed their gift. She emphasizes that donors of all ages, backgrounds, accents, and voice types are welcome (and in the future, speakers of other languages). Since each voice is as unique as a fingerprint, "We need everyone."

VOCALiD’s Moment?

Today an estimated 2.5 million individuals in the United States have unintelligible speech and increasingly people are turning to technology for all kinds of solutions. Indeed it could be the right moment for VOCALiD and the Human Voicebank. Patel notes that the tablet computer is helping lower the stigma (and cost) of speech generating technologies, particularly for students but also for seniors and other adults. And the reticence most seniors have had toward adopting new technologies will soon dissolve into the high technology expectations of the aging baby boomers. Perhaps in the not-too-distant future many of us will recognize the foresight of banking our voices, not only to be charitable, but also to help ensure we retain our vocal identities throughout life’s twists and turns.

Interested in donating your voice? Register and get started at the Human Voicebank website. Voicebank version 2.0 was released this November and integrates new analytics and features for motivation. Also consider organizing a Voice Drive as a VOCALiD Ambassador. Email VOCALiD for your Voice Drive Toolkit.

"For me," Patel says, "it's much more than about just donating voices. It's learning about disability, about having empathy and taking action."

NOTE: a version of this article first appeared in the fall edition of the MassMATCH Quarterly News.  

More 
Partnership 
Resources! 

 

Further reading from the archives of the Pass It On Center and RESNA Catalyst Program 

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