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.

What Does Your Family Need?

Family Needs AssessmentFamilies which include members with intellectual and developmental disabilities (I/DD) have a variety of needs from obtaining healthcare to navigating social service systems to emotional support. And, these needs can be substantially different from the needs of families who do not have a member with I/DD. That is why organizations such as The Arc exist: to help families meet those unique needs.

Now, an international team of researchers is working to identify and prioritize these needs and compile the data into a report that will help organizations such as The Arc, early intervention programs, family-related and human service organizations better understand what needs are the most critical to families and seek funding to provide for those needs.

Can you help? If you are the parent of a child with I/DD from birth to age 21, you can take this online survey, called the Family Needs Assessment (FNA) and help us understand exactly what your family needs to thrive.

But the FNA survey is not just about collecting research. In addition to providing crucial information, the survey is designed in such a format that families can use it in their planning processes for obtaining specific family support. And it will provide immediate links to the best online resources for each type of need identified.

The survey consists of 75 “needs statements” that relate to 11 areas of family life including health, daily care, social relationships, family interaction, spirituality and economics among others.  Each individual taking the survey will rate the extent to which specific “needs statements” represent a need for their family on a 5-point scale. If you would like to take the survey, it should only take 15-20 minutes to complete. Find out more and start the survey at the at the Beach Center on disability at the University of Kansas website.

Solutions for Elderly People with I/DD – Call for Innovative and Effective Solutions

Most of us have heard of the aging baby boomers, and have seen the rising population curve that shows how many of us will turn 65 and older over the next few decades.  The word on the street is that 10,000 Americans will turn 65 every day.  The image raises questions about security in the older years, caregiving for loved ones that are elderly, health care, employment, housing, transportation, acquired disability due to aging, the limited direct care workforce available to provide quality care, and the risks associated with each of these issues down the line.  For The Arc and those we represent, the aging issue brings about another unique dimension:  aging people with intellectual and developmental disabilities.

Recently I drove through the heartland of America on a few less-traveled roads.  Small towns drifted past my view.  In those towns lived a community of people of all ages, some of them I’m guessing were older, even elderly.  Statistics insist that people with I/DD represent up to 4% of the total US population.  So I do the math, and figure that even small towns have the likelihood of having someone in their community with I/DD of any age.

People with I/DD are also part of the baby boom scenario, in that they, too are growing older.  This group of older individuals with I/DD is virtually invisible to the general population.  Many have lived with their even older parents, often tucked away from the larger society.  Research shows that many people with I/DD have significant health disparities – obesity, diabetes, heart disease, asthma, and dementia to name a few- some of which unfortunately result in an unnecessarily shorter life span.  The Centers for Disease Control is attending to this issue as a priority, as is The Arc with its new CDC-funded HealthMeet initiative to promote health for people with I/DD.

This leads me to some questions: what do people with I/DD do when their own elderly parents leave the home for assisted care, or die?  What happens to the person with I/DD if families don’t have a future transition plan in place?  What if they don’t have other family members or a local service provider willing to take over support responsibilities? How is the response system prepared to address a traumatic transition during an emotionally traumatic time, and in a way that accommodates and supports the person with I/DD?   How is the medical profession prepared to address age-related disabilities in the context of someone with I/DD?  How is The Arc working with families and communities to respond to these unique issues?

Knowing that the Chapters of The Arc are the foundation of innovative and effective solutions, I invite you to send me a description of what your Chapter is doing in aging services for people with I/DD.  Send me stories of how your program has changed the life of someone that is older for the better, or if you are a family member of or an older person that identifies as having an intellectual or developmental disability that has experienced a positive outcome from a local Chapter, send me your story.  You can write me at research@thearc.org.

I look forward to hearing from you.

The Arc’s HealthMeet™: Health Promotion for People with Intellectual Disabilities

You may have heard the good news in August that the Centers for Disease Control (CDC) awarded The Arc a three-year cooperative agreement to raise awareness of and reduce the significant health disparities often experienced by people with intellectual disabilities, including those with autism. We aim to do this through offering free health screening events for people with ID, collecting and evaluating the health screening data, and launching an amazing array of evidenced-based and best practices training for key stakeholders, including people with ID.

The Arc has one million dollars to work with in this first year of the project.  And one year to make an incredible impact.

Imagine someone with an intellectual disability going through a health screening to discover that they have an undetected health issue, like high blood pressure, an infected tooth, or an untreated issue on the bottom of their foot.  Or maybe it’s a hearing problem or blurry vision that shows up in the screening.  Health professional volunteers conducting these screenings will help identify areas of concern, and staff from Chapters of The Arc will be on site to provide information, referrals, and linkages to local doctors.  This effort will be among the first to collect HIPAA-compliant health data on this population, data that will help bring more awareness and solutions to health issues that they face.

So what is our plan?  Our goal: to move more than 6,000 people with ID of all ages through a basic, free, non-invasive health screening that is conducted by volunteer health professionals such as nurses or medical students.  The CDC helped The Arc to shape the plan that focuses on five selected states/regions in which to work on implementing HealthMeet™ initiatives in this first year.  Working in a pilot phase with an eye towards replication opportunities, The Arc will be working with The Arc of Massachusetts, The Arc San Francisco, The Arc New Jersey, ACHIEVA in Pittsburgh, PA, and The Arc of North Carolina.  Together, we will implement and evaluate five different models and the work has already begun.

We are working with some amazing national partners – the Association of University Centers on Disabilities (AUCD), the American Association on Intellectual and Developmental Disabilities (AAIDD), Autism Speaks, the National Down Syndrome Congress, and the National Association of County and City Health Professionals.  Therap LLC is helping us to collect the data using state of the art technology, and the Elizabeth Boggs Center in New Jersey is helping with the data evaluation.  We are in discussions with major corporations to see how they can lend a helping hand to this important initiative.  The Arc’s own National Self Advocacy Council is involved in getting their growing network of people with intellectual disabilities involved.

We’re going to need your help.  As these Chapters of The Arc work within their states to implement HealthMeets™ early in 2013, we want our network and our national partners to activate a HealthMeet™ movement in these states.  There’s going to be online training that you can register for, learn from, and pass along to someone else.  There might be someone you can help by getting involved yourself as a volunteer.

You’ll be hearing more and more about HealthMeet™ as we advance towards full implementation.  We can all take part in activities that lead to being healthy.  Join us!

HealthMeet™ is funded by the Centers for Disease Control Grant # 1U59DD000993-01.  For more information, please contact The Arc of the United States at 202-534-3700 or at info@thearc.org.  Or, visit our website at www.thearc.org for project information.

The New Autism Numbers – Why They Matter

Winter Bridge Over River

This past week, the Centers for Disease Control released their new data on the prevalence of autism. The numbers are staggering: an estimated 1 in 88 children will have autism. The number for boys is even higher: 1 in 54.

The implications of these numbers that seem on an unobstructed downhill slide stopped me in my tracks.

Think ahead ten years from now. Think about your family. A classroom. A school bus. Your church or synagogue, a train car, where you work and where you live. Think about your local Chapter and its capacity to respond to this population and their families, including funding resources. Think about the number of 1 in 88 and how that plays out in a human scale.

Are we ready?

Are we ready?

The Arc stands firmly embedded in more than 700 communities and it collectively serves more people with autism than any other organization. In this role, we must involve, engage, understand, and embrace the rising cohort of families connected to children with autism and provide them access to what we have learned, what we know.

An observation: It seems that many families connected to autism are indeed focused on the “cure” for the phenomenon that they feel has suddenly obscured the personality, communications, and functioning of their child. This focus has created a rupture at times between those who would and would not cure disabilities, sometimes creating robust debates within disability identity and disability pride and civil rights frameworks. Face it – many of us have worked hard to have society accept a “disability is a natural part of the human experience” attitude to advance full inclusion and quality life opportunities for people with disabilities. Going back to a “cure” stance and invoking medical model thinking for disability issues is perceived as a threat by many in the disability world.

“The Arc serves and supports people no matter what definitions are given to a specific diagnosis by the medical community.”

Understanding this is a loaded and sensitive topic. I think we can all agree that encountering autism is a much different experience than when a family encounters the genetically or physically explainable intellectual or developmental disability at birth. In my journey, I have listened, as perhaps you have, to heartfelt stories of how a child was one day, and then was someone else over a very short amount of time due to something called “autism.” There are no answers. No reasons or even proof – except for the altered behavior. From listening – without trying to alter their perspectives (an important element in the listening) – I now have a better understanding and empathy for why families seek the “cure” for autism. It’s not because they hate disability or value people with disabilities less than those who don’t have a disability; in fact, many autism-related families do not identify as being part of the disability community and have never been taught our principles. Families connected to autism may see the autism event as a preventable and perhaps reversible medical phenomenon that had monumental detrimental effects on their loved ones. And even as some do not accept autism as the obscuring agent, many surge into full acceptance of the child that now exists, as a whole person. Loved, celebrated, accepted, supported. Seeing them in action is not much different than watching our own families in action within The Arc.

And there lie the differences and the commonality, which are not, I would argue, mutually exclusive of the other. All we need is a bridge.

Building the Bridge

The Arc supports families connected to people intellectual and developmental disabilities across the lifespan, including those with autism. With families that are learning about us for the first time, we cannot be so ferocious in our demand for immediate alliance with our learned perspectives that we forget that we, too, started at some point on the road to understanding that disability is okay, it can be celebrated. At some point we learned for the first time what self determination, self advocacy, and disability pride are and how to infuse these principles into our daily lives. It is a journey. I do not believe that seeking answers and resolution to the question of autism are in conflict with our (The Arc’s) core values, mission, or principles. Whether autism is considered an epidemic or a public health emergency or not, The Arc serves and supports people no matter what definitions are given to a specific diagnosis by the medical community. I do believe that The Arc and others in the disability nation have a responsibility to understand these perspectives, to accept families for who they are and where they are in their journey. I believe that The Arc should offer them what we do know in terms of what inclusion means and how it can be achieved in the community with the right supports; about advocacy and self-advocacy, self-determination, disability pride; and provide culturally proficient services (autism as culture) to meet their needs. Along with that should come more thoughtful listening, a lowering of the aim against those who seek solutions, and the raising of a bridge to go with it.

In many ways, The Arc itself is a spectrum. A bridge, if you will. We serve and support many with an incredibly diverse array of needs, perspectives, diagnoses, and goals. Our mission: to promote and protect the human rights of people with intellectual and developmental disabilities and actively support their full inclusion and participation in the community throughout their lifetimes. There’s room in The Arc for many more.

Tuning In

Old RadioThese days, there’s a lot of talking going on. In the disability world, if you turn the radio dial, you can switch the stations from diagnosis, early intervention, and how to manage the new identity of being a family connected to a child with an intellectual and developmental disability. A few clicks up and the voices are talking about friends, inclusion, transition, and a few words on jobs and post-secondary education. Self-advocacy is heard, in some coverage areas. Turn the dial even further and words about community living, placements, institutions, sheltered workshops, supported jobs and community-based employment fade in and out. Futures planning, special needs trusts, and what to do now that Mom and Dad are old themselves. Siblings. Family support. And through it all, you hear: where are the resources to help us…

In the middle of the audible voices is a lot of static. White noise relating, perhaps, to the day-to-day survival, the daze of home to school to work to home to family in any given day; the disconnect between that and the sharp always unanticipated disruption of when the supports fall away. In some places, there is no noise at all.

The Arc is Listening

I wonder who is listening. I wonder what families are going to do.

The answer comes to me: The Arc is listening. The Arc helps families help themselves, as we’ve been doing for more than 61 years. From the listening sessions at our Annual Convention where people were given open access to a microphone in front of the Board, to hear what they wanted to say…. To our Autism NOW Center that reflects an array of information resources for people with autism and other developmental disabilities and their families… to the opportunities we give to the nation to get families involved in advocacy, in membership, participation or leadership at local, state and national levels, in working with us to advance better options for people with I/DD and their families. Our 50 Chapters that are involved in designing customized School to Transition Programs to help young adults adapt to life after high school. Through all of these, there is a listening process occurring, and we are collectively learning from all of you. Only if we listen, can we learn and grow. Only if others express their thoughts, their preferences, will there be something to learn from and something to share.

Get Involved

The Arc has always been about supporting families, and supporting those they are connected to: people with intellectual and developmental disabilities. If you are a family member and haven’t gotten involved in The Arc, think about it. If you’ve thought about creating a new Chapter, go for it. Yes, YOU. If you’ve thought about honoring us with your time, we’d love to have you with us. Now, more than ever, tuning in and getting involved in the dialogue is so important; our country is going through monumental changes that have every possibility of affecting the daily options that we have to choose from.

We’re here. We’re listening. Tune in, wherever you are, any place on the dial.

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.