The Declaration: Just Do One Thing

For the last few days, I’ve been at the Coleman Institute Conference on Technology for People with Cognitive Disabilities near Boulder, Colorado . I’m proud that The Arc helped to launch the Declaration of Rights for People with Cognitive Disabilities to Technology and Information Access, a stunning Jeffersonian document written by a small group of dedicated thought leaders in technology and cognitive disabilities.  This document, which is available in several versions to ensure equal access to diverse readers at http://www.colemaninstitute.org/declaration, firmly reminds the United States and the world that communications platforms are public domains and therefore need to be accessible for all.

Why is this so important?  Imagine, if you will, being unable to use your cellphone, computer and internet, ATMs and electronic banking, online job application forms, online insurance, health information, emergency information, weather, local community information… and anything else you access through electronic or wireless means.  Imagine that while you might have the equipment, the languages and instructions that are used in all of these platforms are written in a confusing language that you don’t understand, maybe in words that are too small or which you can’t see clearly and which demand speed in processing that are too fast for you to react to. Now imagine (this is the easy part) that these platforms are how the world around you communicates with and operates upon. But because the platforms upon which the communications are built are not written into your language and communication needs, there is no way for you to move in this social space.  You are, as a result, wholly dependent on someone else to help you translate the information you need to know.  This is largely the current reality for people with cognitive disabilities in terms of technology and information.

People with cognitive disabilities include those with intellectual disabilities, Alzheimer’s, traumatic brain injury, some psychiatric disorders.  While these impairments are the reality for this population, it does not mean that they should by virtue of their impairment be forever excluded from the public communications domain or marginalized as full citizens of this world.  They deserve equal access to technology and information that support public communication and which have become a mainstay of social interaction.  The Declaration states without apology that technology and information must be accessible to all, not just to those who can read or process or be physically adept in seeing, hearing, and typing to interact with this system. There is a sense of urgency to this because cloud-based communication platforms are solidifying rapidly, and if we don’t take action now, people with diverse communication needs risk being forever excluded.

And we can’t let that happen.

The Arc has been working on this Declaration with other thought leaders in cognitive disabilities and technology to ensure that the needs of people with intellectual and developmental disabilities are included in this new social movement.  The Arc and now 57 organizations and even more individuals have formally endorsed the Declaration.  I urge each of you to go online and read it yourself. The more people sign on, the more visibility, awareness, and power this movement will gain to advance accessibility in the new cloud based communications and information field.  Here’s one more thing: Earlier this week, our small group of thought leaders went around the room and promised to do at least one thing to advance this social movement.  As you read this, I ask you to do one thing as well to help us advance this important cause.  Perhaps you will review the Declaration and endorse it, or perhaps to send this to your personal networks.  Or maybe you can print it off and hang it in your office or send it to your child’s teacher or bring it to your local wireless communications provider.  Maybe you’ll write your own blog, post it on Facebook, tweet it out, talk about it in a staff meeting, or simply think about ways to help while you tend your late summer garden… the list of possibilities of what you can do is endless, just as the possibilities of how this modest document might change the world for people with cognitive disabilities.

Do one thing.

Help us change the world.

We are The Arc.

The Arc Endorses the Declaration on the Rights of People with Cognitive Disabilities to Technology and Information Access

People with cognitive disabilities have an equal right to technology and information access. A formal declaration on this right was officially unveiled at the Thirteenth Annual Coleman Institute National Conference on Cognitive Disability and Technology, held October 2, 2013, in Broomfield, Colorado. The Rights of People with Cognitive Disabilities to Technology and Information Access is a statement of principles: the rights of ALL people to inclusion and choice in relation to technology and information access.

“Cognitive disabilities” include intellectual disability, autism spectrum disorders, severe and persistent mental illness, brain injury, stroke, Alzheimer’s disease and other dementias. People with cognitive disabilities are estimated to comprise over 60% of the world’s total population of people with disabilities. The vast majority of people with cognitive disabilities have limited or no access to comprehensible information and usable communications technologies.

“The formal declaration is being presented at a time when the pace of the digital age is accelerating rapidly. Access to technology and information access is essential for community and social participation, employment, education, health, and general communication. Advocates for people with cognitive disabilities may use this declaration to stimulate greater attention nationally and worldwide to the possibilities now at hand for people with cognitive disabilities through technology while promoting their rights as citizens to access to it,” said David Braddock, Professor of Psychiatry and Executive Director of The Coleman Institute on Cognitive Disabilities at the University of Colorado.

“Technology can expose individuals with intellectual and developmental disabilities as well as those with cognitive disabilities to a new world. The advantages of technology are something that every individual deserves to have equal access to, which is why The Arc supports the Declaration on the Rights of People with Cognitive Disabilities to Technology and Information Access. Technology can be particularly beneficial to individuals with disabilities as it can serve as a communication device, assist in education, and overall promote independence,” said Peter Berns, CEO of The Arc.

To read the complete declaration, and to personally endorse it, visit the Coleman Institute website, at: http://www.colemaninstitute.org/declaration

How Can the Cloud Help Your Chapter?

By Mike Holihan, MediSked, Guest Blogger

As many provider agencies adopt cloud based software solutions to manage their records, let’s examine the benefits to the people who are receiving the care and service provided to them by these agencies. How does a hosted software solution (aka cloud based; meaning it is accessed through the internet) help organizations like chapters of The Arc provide the highest quality of care to the individuals we serve?  Can the cloud make the lives of people better?  We believe it can.  Below is a list of examples of how cloud based software for providers can give crucial support staff access to information instantly, wherever they are.  The cloud takes records out the filing cabinets or binders and puts them at the point of care where they belong.  Let’s look at some examples.

  • Time searching for records: With a cloud based solution, client records are centralized and new information regarding them continually gets added to the same spot.  So you always know where to look for any type of information on an individual. Think about how agencies traditionally store information today. How long would it take a provider to find out a client’s Medicaid # or emergency contact?  Sometimes access to client records is urgent and time searching for that information in a paper storage system could be crucial. Time searching for records is a big improvement when you move to the cloud.
  • Special instructions: Special instructions are a lot more valuable when they’re at your fingertips.  Whether it’s enhanced protective oversight or allergies, when a provider organization’s staff sees them right away, they can avoid negligence and improper care.  So let’s say direct care staff is on a picnic or at the park with the people they serve and someone gets stung by a bee.  The employee could pull out their smartphone and access the client record to see if they have a bee sting allergy. If they do, there could be instructions on what to do or the employee can react quicker in calling for medical care. If they see that they don’t have an allergy, they can react in a more appropriate manner. It’s all about giving staff access to information that will help them make better decisions in case of an emergency.
  • Medication administration: Rather than waiting until the end of the week to find out if a medication has been missed or administered in error, the cloud allows for real-time records. The cloud allows an agency to become more proactive instead of being reactive. This is the benefit of “real-time” records.  Real time refers the ability to see when changes are made to a record as soon as an employee makes them in the system.  Because the system is accessed through the internet or cloud, real time records give the provider, much more power in helping provide better quality of care because you can manage things that are happening as they are happening.  As opposed to be reactive and trying to correct or fix something long after the fact.
  • Improved communications: Providers can talk to each other in real-time to inform other staff of any issues or concerns, rather than allowing those issues to grow.  A good example is, change in health, behavior, demographics, or natural supports being circulated immediately. Think about how agencies traditionally work.  Departments are siloed, meaning that one department rarely talks to another department. The cloud breaks down department walls and allows better communication around what’s really important, an individual’s care.
  • Improved outcomes: When data is available immediately, it can be used for trending and making better clinical decisions.  When it exists only in a notebook, it is never charted or tracked.  A good example: seizures, weight, behaviors, falls, choking, blood glucose, and more. If ignored, these predictive variables could be missed and an individual could end up in the hospital, where they are more likely to contract other illnesses.  Again it’s about being proactive and the cloud allows that to happen!

For more information on how the cloud helps chapters of The Arc improve the quality of care, get a free e-report.

Cloud Computing and People with Cognitive Disabilities

Computer Monitor with Sky Blue Screen

I’m here at the University of Colorado in Boulder at a fascinating two-day conference on cloud computing for people with cognitive disabilities. Hosted by the Coleman Institute for Cognitive Disabilities and others, the conference focuses on envisioning a future in which people with intellectual and developmental disabilities (I/DD) use cloud technology to support every day activities. “Cloud computing?” you may ask. What is cloud computing, and what is the relationship to supporting people with I/DD?

Cloud computing is real and is already happening. According to Wikipedia, “Cloud computing is the delivery of computing as a service rather than a product, whereby shared resources, software, and information are provided to computers and other devices as a utility (like the electricity grid) over a network (typically the Internet).” Think of internet-based tools such as Google docs, Picasa photos, on-line education, or paying a speeding ticket online. Online banking. Applications on your cell phone. Remote supports in residential settings that use off-site monitoring. Smart homes. These are all examples of cloud technology.

Families connected to I/DD need to be aware of the impending crisis: there are not enough personal support staff to go around for all of the estimated 8 million people with I/DD, many of whom are living with aging parents. Add to that equation the rising aging population that will be competing for care attendants. The writing is on the wall – there are fewer government resources to pay for traditional support services for people with I/DD as we know them today. As a result, we need to be looking at alternative solutions to support needs now. Developers of cloud technology are working on supports for people with I/DD that include family involvement and partnerships, supported and customized employment, recreation and leisure, remote therapies and counseling, health promotion, fiscal management, and many other daily supports. While the research is largely catching up to this digital revolution, early indications are that cloud technology advances the independence and self determination of people with I/DD. While this technology will never replace the one-on-one supports needed by those with significant support needs, for many others cloud technology represents a new way of achieving personal goals and moving through day to day activities, with less reliance on others.

The Arc’s Research and Innovations Department will be highlighting cloud technology on a regular basis. Good places to get information online are the Global Public Inclusive Infrastructure (GPII), Ablelink Technologies, and the Coleman Institute for Cognitive Disabilities.