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AT Program News
News for and from the State AT Act Programs, the Alternative Financing Programs, and their community partners

June 2012 "The Global Effort"   
In This Issue
Keeping up with the CRPD?
Thinking Global with Cathy Bodine
A Crazy Idea Becomes Migdalia's Dream Come True
Help Emerging AAC Nations During ISAAC 2012!
AT Center Leadership Network Forming
M-Enabling Global Briefing Live Web Cast
PRATP Holds Device Donation Rally
Next Up: Low Tech!
Keeping up with the CRPD?
 
With over 80% of the world's population now covered by the treaty, what does it mean for AT?

Graphic of the United Nations in New York City.The United Nations Convention on the Rights of Persons with Disabilities (CRPD) continues to make impressive headway. To date, 153 nations have signed the CRPD and 112 have ratified it. According to Axel Leblois, executive director of the G3ict
(a UN initiative promoting inclusive information and communication technologies), this means that over 80% of the world's population is now covered by the treaty, representing one of the fastest rates of adoption of any international treaty in history.

This progress is significant, not only for the basic rights of persons with disabilities, but also for AT awareness, research, access, and adoption on a global scale. The CRPD makes the failure to provide "reasonable accommodation" an act of discrimination. And it specifically requires the promotion of accessible information about AT, research and development of AT and accessible information and communication technology (ICT), as well as training for professionals and staff working with individuals with disabilities. It also requires States to provide accessible ICT on par with the built environment and transportation. For ratifying parties, notes Leblois, this means it is as much a legal requirement to provide accessible Web sites and ATMs as it is for public buildings to have ramps.[1] 

So how will it happen? After all, treaties are one thing, action is another...

The G3ict is working to advance the treaty's aims through various initiatives and partnerships (see, also, the AT Centers Leadership Network article, this edition). One funding mechanism the G3ict is promoting is the use of Universal Service Funds (generated by telecom providers worldwide). 17 countries, including the U.S., have expanded their Universal Service Obligation (USO) to include funding AT for persons with disabilities. It's a model the G3ict believes has enormous global potential. Originally conceived for hardwiring telephone access to rural areas, Universal Service today generates billions of dollars that can go unspent due to the growing wireless infrastructure. The G3ict is aware that the treaty adds logic and urgency to expanding Universal Service in this way. In its December, 2011 report, Universal Service for Persons with Disabilities: a Global Survey of Policy Interventions and Good Practices, the authors emphasize that nearly all countries with a telecom regulatory authority are parties to the CRPD.[2]   

Back in the U.S. of A...

The U.S. signed the CRPD on July 30, 2009, and is now moving toward a Senate vote for ratification. Ratification requires a Senate super-majority (two-thirds in support or 67 senators). Two weeks ago the Obama administration submitted the CRPD to the Senate for its advice and consent for ratification. On May 25th a bipartisan group of seven senators (John McCain [R-AZ], Dick Durbin [D-IL], Jerry Moran [R-KS], Tom Harkin [D-IA], John Barrasso [R-WY], Chris Coons [D-DE] and Tom Udall [D-NM]) issued a press release in support of ratification. "Senate consent to U.S. ratification of CRPD," the statement asserts, "will recognize the fundamental values of non-discrimination and equal access for persons with disabilities in all areas of life and help protect Americans with disabilities who work and travel abroad from discrimination, including disabled veterans." 

Once the Senate votes to ratify, t
he CRPD is then signed by the president at which point it becomes enforceable. U.S. ratification, however, would likely not impact U.S. laws. According to the U.S. International Council on Disabilities (USICD), in cases where existing U.S. law (i.e. the ADA) is not consistent with the CRPD, the U.S. can ratify the treaty subject to Reservations, Understandings, or Declarations (RUDs).  So why should the U.S. bother? The USICD is seeking ratification because "[It] would present the opportunity for a reaffirmation of these values and provide the forum to advance them worldwide." [3]
  
Read the full text of the CRPD  
Track the CRPD's ratification progress
--------------------------------------------
 1. Leblois, Axel. "New Opportunities for Assistive Technologies," Friends of ATIA Newsletter, November, 2011
 2.  Bhartur, Deepti & Leblois, Axel & Narasimhan, Nirmita, Universal Service for Persons with Disabilities: a Global Survey of Policy Interventions and Good Practices, The Centre for Internet and Society & The Global Initiative for Inclusive Information and Communication Technologies, December, 2011. 
 3. http://www.usicd.org/index.cfm/crpd-faq (May 27, 2012).

Thinking Global with Cathy Bodine

 

Head shot of Cathy Bodine
Cathy Bodine, PhD, CCC-SLP
Global interest in AT is growing. Cathy Bodine, executive director of Colorado's Assistive Technology Partners  (which implements the Colorado Assistive Technology Act Program) has seen this first-hand. With her colleague Dr. Randi Hagerman of the MIND Institute at UC Davis, Bodine has traveled to Dubai, Barcelona, Istanbul, Rome, Taiwan, and Guadalajara to educate professionals, families, and whole communities on high and low tech assistive technologies. Her international consulting work spans more than two decades and during this time she reports attitudes have been changing.

 

AT Program News spoke with Bodine about her international work last month.  Bodine wears many hats. In addition to directing Assistive Technology Partners, she is an associate professor at the University of Colorado's Dept. of Physical Medicine and Rehabilitation, and is principal investigator for the Rehabilitation Engineering Research Center for Advancing of Cognitive Technologies (RERC-ACT). In 2010 she traveled to Guadalajara to provide a keynote address to the 1st International Conference on Autism and Fragile X Syndrome, drawing on her expertise in cognitive AT.

 

ATPN: How did your international work develop?

 

CB: Dr. Hagerman, at the UC Davis MIND Institute, used to be here at the University of Colorado.  We've been working together for many years, and when she has an international trip--doing physician training and diagnostic work--she always makes sure I'm included so we can look at the habilitation needs of the population and talk about assistive technology.

 

You mentioned that there's a lot more interest in AT in general...

 

Yes, increasingly AT is being recognized world wide as a necessary component  of services for people with disabilities. And in developing countries, in particular, they are desperate for help. In Mexico we went up into the mountains outside of Guadalajara to a village without electricity or indoor plumbing where they have a high incidence of disability. They were really in need of low tech solutions, as well as just an understanding of the disabilities themselves.

 

Do you always go to remote/under served areas?

 

There's always two components to these trips. One is to do a conference for baseline education with as many people as possible, and then the second thing is to help set up clinics. In Guadalajara I did a lecture to 1000 people, "Assistive Technology, Autism, and Fragile X Syndrome: Advances in the Field." The audience was half medical personnel and half families.  Then we went to the one and only rehab clinic that exists for kids and adults with disabilities in Guadalajara, and we talked with them about developing an AT program for children. We also visited the one and only special education program for students with disabilities, and we traveled to the village.

 

So depending on the country, and their infrastructure--in many cases they are just getting started with serving children and adults with disabilities--they may be desperate for information and for knowledge. And a lot of what I do is talk about how to develop programs. Because I have a very strong bias that you can try to help people all you want, but if you don't have an infrastructure in place it's just not going to happen. It won't survive.

 

And you're seeing demand growing...

 

It really is. Over the years that I've been doing this, there's a growing world wide awareness that disability cannot be ignored and that it's in a country's best interest to serve the needs of the families and individuals with disabilities. It's a growing social awareness and conscience. And I think that as countries develop they recognize that these are very disenfranchised people and that they deserve to be served. 

 

What do you attribute that to? Is the UN Convention [on the Rights to People with Disabilities] playing a role? Or is it all just coming about at the same time...?

 

I think it's coming about at the same time. People come from so many different walks of life. What I have seen over and over again--the way this actually happens--is that a family with a little bit of money and a child, typically, will get it started in their country.

 

So it's pretty much the same way all over the world!

 

It is! And they want their child to get the best, and so they'll go to whatever lengths they have to go to.

 

Was there a first family in Guadalajara that you were connected up with?

 

Yes, and they have absolutely been amazing. They have since come to our clinic in Denver with their child  and have sent two other families to get wheelchair seating and other technologies set up.  And they're continuing to grow the services for kids with disabilities in their communities. Indeed, in each of the countries, what's wonderful is we typically really get to know a particular family. And that is pretty cool.

 

Thanks for sharing your experiences with ATPN Cathy!

 

Cathy Bodine will serve as a panelist at the M-Enabling Global Briefing event in D.C. on June 4th.   

A Crazy Idea Becomes Migdalia's Dream Come True

A Puerto Rico Assistive Technological Program (PRATP) success story

By Carlos Carle Rivera, OTL (with Eliza Anderson)
Headshot of Carlos Carle Rivera
Carlos Carle Rivera

When I first met Migdalia Rivera, in October of 2010, she greeted me with a smile that made me forget the hot afternoon and the long drive from San Juan to Ponce. Here was a woman who radiated joy, peace and a love for life, a truly remarkable outlook, I thought, considering her circumstances. Migdalia--who is happily married, surrounded by family, and busy with crafts--spent 24/7 lying in a prone position housebound to her bedroom. Due to her condition, she lies supported by her elbows and cannot change positions or transfer from or to bed. While she is full of sunshine herself, she had not actually felt the sun on her skin for 15 years.

Migdalia was referred to PRATP by Centro Ponceño de Vida Independiente (CEPVI) to evaluate her positioning in bed. When I first arrived, she showed me everything she had within reach, such as personal toiletries and other things. She showed me how she reaches the light switch, telephone, etc., and how everything is well organized. I then asked her about the bed and we brainstormed ideas. We talked about a multi position bed in order to provide her a better posture, comfort, and security while keeping her necessary prone position. I thought about getting her a full electric multi position bed so she could put her head by the footboard and her feet by the headboard. Using the footboard elevation, I thought she would be able to elevate her torso and reduce the pressure on her elbows (which creates huge calluses). But this idea didn't work because she wasn't comfortable with the pressure on her chest due to the elevation. Then I thought about using elbow protectors to reduce contact between the skin and the surface of the bed...

And then another I idea bounced into my head, one that addressed her biggest quality of life issue.  "This may sound ridiculous," I told her, "but what if said I thought you could move inside and outside of the house? What if you could remain in this position, and drive a gurney with a motor?"

Migdalia looked at me and smiled and nodded. I could tell she was uncertain. And the truth was so was I. But I suspected it just might be possible....

I recalled what I had seen back in 2004 at CSUN's International Technology & Persons with Disabilities Conference. It was a mobile system that looked like a motorized gurney controlled by a joystick. Now as I spoke with Migdalia, I wondered about suggesting this idea to students of the Industrial Engineering Department at the University of Puerto Rico at Mayagüez. I knew this type of collaboration had been taking place for many years. Dr. Mauricio Lizama, coordinator of DEDAT (Componente de Diseño Evaluación y Desarrollo de Asistencia Tecnológica-PRATP), had occasionally asked me for ideas in the past. His PRATP initiative partners with the Department of Industrial Engineering to make such dreams come true.

Eventually we obtained approval for this "crazy idea." Gina Montes Albino, Juan A. Carrero Reyes, and Fernando J. Carrero Reyes, students of Dr. David Serrano, (professor of the Mechanical Engineering Capstone course) took charge of the design, material identification, trials, and manufacturing processes. Héctor Méndez, assessor of the PRATP, donated the base of a power wheelchair with the necessary electronics. The outcome was a truly unique mobile system: a powered gurney with the security and mobility features that would provide comfort and freedom to a woman who had been unable to leave her house  for 15 years!
Historia de Exito - Migdalia Rivera
Historia de Exito - Migdalia Rivera

On September 9th, 2011, we delivered the system to Migdalia. It was an emotional day that my PRATP colleagues and I will always remember. She maneuvered herself outside to again feel the warmth of the sun. Our crazy idea had become her dream come true.

These days Migdalia takes strolls through her neighborhood. She goes shopping, feeds the birds, cooks pancakes, and has even started gardening. Assistive technology truly does make dreams come true.

View more PRATP success stories on You Tube
Quick Links 
Help Emerging AAC Nations During ISAAC 2012!
ISAAC 2012 logo.  
The International Society for Alternative and Augmentative Communication (ISAAC) is collecting books, resource manuals, training DVDs and/or videos for distribution to ISAAC members from emerging AAC nations during its ISAAC 2012 conference. The event will be held in Pittsburgh, PA, July 28 - August 4, 2012.


If you have augmentative and alternative communication (AAC) books or other related material that you no longer use, or feel might help someone or some organization, this is your chance to clean off your shelves and make valuable resources available to others at the same time. By donating resources you will be directly supporting the growth of AAC throughout the world.

You can either drop off your donations at the ISAAC booth at the conference or, alternatively, send us a list of the books or other materials that you are able to offer. At the ISAAC BUILD meeting, we will then make this list available to people from developing countries. They can then each draw the name of one book that they would really like to receive. We will match you to the person from the developing country and ask you to mail the book directly to that person, via surface mail, to save costs.

If you have any questions, please email Juan Bornman 
or Rajul Padmanabhan

-Amy Goldman, MS, CCC
AT Center Leadership Network Forming

Graphic of business person and technology encircling globe. To help advise emerging AT centers around the world, an international collaboration of  experienced AT centers is now developing, and they are looking for dedicated experienced providers to join them.

Led by David Banes, CEO of Mada, the assistive technology center in Qatar; and Axel Leblois, executive director of the G3ict (the Global Initiative for Inclusive Information and Communication Technologies), the Leadership Network held forums at both ATIA Orlando and CSUN's conferences this year. There panelists explained the goals for developing the network--to help drive forward the aims of the UN Convention on the Rights of Persons with Disabilities by sharing best practices and lessons learned with nations in the early stages of providing access to AT for their residents with disabilities.  Current members include AT Centers from Singapore, India, Italy, Spain, the U.S., and Qatar.

The Network is conducting its first activity at  ATIA Orlando 2013. Leblois reports this will be a hands-on workshop for AT Center leaders to share experiences, practices, management tips, and insights for AT development.

If you run an AT Center and are interested in participating you can learn about eligibility and participation requirements at this G3ict Web page.  In an email to ATPN, Banes notes the initiative "offers AT Centers the opportunity to collaborate across the world and, importantly, to begin to develop a collective voice with the AT and IT industries." 

Read the AT Center Leadership Network Member's Charter
M-Enabling Global Briefing LIVE WEB CAST June 4, 2012

The Global Initiative for Inclusive Information and Communication Technology (G3ict) is conducting a series of mini conferences on assistive and accessible mobile technology, co-organized with E.J. Krause and Associates. This "global briefing tour" begins in D.C. and then makes stops in China, Italy, and Russia.

On Monday, June 4th, 2012 between 9 a.m. and 12:30 p.m. you can catch the event in D.C. (without getting on a plane) by checking out the live webcast at this FCC Web page.
 
From G3ict Web site:
 
During this session you will:

    * Review what the future of assistive and accessible mobile technology may look like, the latest trends in smart phones and tablets, and how assistive technologies have developed and will continue to develop in the mobile environment.
    * Listen to users experience and feedback on the latest on the latest accessible and assistive mobile  available on mobile phones and tablets.
    * Explore with leading experts what is coming next, how it is being approached by industry and what will be necessary from an infrastructure perspective to leverage innovations.
    * Discuss with service providers key success factors in offering, promoting and delivering mobile accessible and assistive solutions and services to seniors and persons with disabilities.


PRATP's Reuse Program Holds its Second Device Donation Rally

 

PRATP LogoThis past April, the Puerto Rico Assistive Technology Program (PRATP)'s Reuse Initiative held its second AT Device Donation Rally. The event took place at the American University of Puerto Rico, Bayamon Campus and was conducted in partnership with the Puerto Rico Paralyzed Veterans Association (PRPVA). More than 70 devices were collected, everything from wheelchairs, shower chairs, and canes to talking calculators and magnifiers.

 

According to PRATP Coordinator Gretchen Matias Lebron, Puerto Rico has more than 950,000 persons with disabilities, and most have yet to gain access to AT devices or services. Reuse is a logical way to help address the need, and is easily adopted on the island. "Recycling is a part of our daily life because it provides a way to reduce solid waste and unnecessary storage" she notes. "Regarding AT, reuse and recycling allow persons with disabilities to acquire devices at reduced cost or for free, while also minimizing device acquisition time. " PRATP holds its device donation rally in April--Recycling Month in Puerto Rico.

 

Devices collected at the rally are sanitized and refurbished by the PRPVA and made available through their Wheelchair Repair Shop located in Carolina (northern PR). Eligible consumers (who are not able to acquire new equipment through public or private insurance) can then purchase or acquire equipment at no cost. PRATP began this partnership in 2007; PRPVA had an existing DME reuse program. "And so we joined forces to achieve a common goal--to improve, promote, and facilitate the acquisition of AT," emphasizes Lebron. 

 

The Wheelchair Repair Shop serves veterans as well as the general public.  

Next Up: Low Tech Low Tech Low Tech...

Do you have a great low tech resource, program, event or bit of advice our community of programs should know about? A success story you'd like to share? AT Program News is taking a break from mobile everything and apps-r-us this September to focus on low tech solutions. If you'd like to contribute, please email ATPN editor Eliza Anderson by July 30, 2012. 
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