An essay posted to the Nordic Network on Disability Research blog yesterday provides a glimpse into the future for Americans with disabilities should trends continue toward community-based care and inclusion.

The author of the essay is Magnus Tideman, a professor of disability research at the University of Halmstead in Sweden. About 10 years ago, his country completed the process of dismantling its system of institutional housing for people with disabilities that the United States is just beginning to undertake.

Sweden’s move toward decentralized services and support began with the passage of a 1994 law that “guaranteed good living conditions for persons with disabilities” and that would “increase their levels of participation in society.” The nearly decade-long timeframe in which the change was accomplished serves as a benchmark for states like Virginia and Illinois where thousands of people with disabilities are just now moving into smaller, residential settings. The parallel circumstances become even more evident as Tideman continues looking back:

At the same time that the new legislation was introduced, societal development was dominated by economic problems for the public sector and a New Public Management (NPM)-inspired restructuring of the public sector with, among other things, increased levels of involvement from private enterprise within the areas of schooling, healthcare and disability care…

While Tideman concludes that “there is reason to derive much satisfaction” from the completion of these measures, he argues that the decade since completing the fundamental shift has yielded a zero net-gain in the level of support and services for people with disabilities. Those communities that already had a history of providing a strong level of care are offering more and better opportunities than those that do not have similar traditions. The increasing number of young people being diagnosed with a disability is also impacting outcomes, as Sweden’s school system has struggled to provide the necessary resources to keep up with demand.

A bright spot in the new model, according to Tideman, is the rise in self-advocacy among people with disabilities. As individuals are given more freedoms to make their own choices, they are finding new ways to organize and direct care toward what is important for that particular community of people. Tideman characterizes this development in the language of social justice:

The growth of new forms of activity by and for persons with intellectual disabilities can be interpreted as those persons offering resistance to society’s traditional treatment and means of offering support and service.

Not surprisingly, Tideman is calling for an increase in academic research into the new model. He writes that more than 80% of current studies into the Swedish population of people with disabilities are focusing on medical conditions or behavioral health, while the structures that have created and supported the system under which these people access services remains largely unexamined.

Can Sweden truly say they are making life matter for its people with disabilities? Compiling the data to answer to that question would not only aid Tideman’s country, but countries like our own that are trying to follow in their footsteps.

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Image by mrlins (Stefan Lins), used under its Creative Commons license.

Winter was just getting started the last time we looked at health and fitness programs for people with disabilities. The season has been relatively mild by New England standards, and people are sure to be catching spring fever as temperatures top 60 degrees over the next couple of days. So, with the opportunity to get out of doors upon us, let’s look at a couple of stories about new programs that encourage active, healthy lifestyles for people with disabilities.

A YMCA in Lynchburg, Virginia, is taking measures to ensure fitness training for people with disabilities reaches beyond the weight room and exercise studios. A new eight-week program, entitled “Fitness and Well-being for Individuals with Special Needs,” combines exercise with nutrition education; it also requires each participant to be accompanied by a family member or caregiver to ensure that good habits carry over into everyday lives.

Amy Trent’s report about the program on the WSLS website features this slideshow that shows smiling participants playing Twister and making fruit smoothies while audio clips from the YMCA staff and caregivers relate the value of stretching before exercising and extol the virtues of the buddy system. Megan Garland puts it best when she explains how the approach has been effective:

They see exercise and they shudder. They don’t want to do it. They don’t want to get on the treadmill. But all of a sudden you add this social aspect to it and it’s fun; it’s more like a game.

Garland is the caregiver for Nathan Overstreet, and she also says the program has helped Nathan be more mentally engaged and given him a certain sense of freedom. Similar outcomes are being produced in upstate New York, where instructors in a martial arts dojo are offering a self-defense class for people with disabilities. Kathleen Poliquin’s article on “Cane-Fu” in the Post-Standard was replicated for the Syracuse.com blog, and in it one of the instructors shares a letter from a neurosurgeon, who says of the training:

Practicing the moves as taught will help with rehabilitation and mobility. But most importantly, the very act of learning self-defense after neurologic loss can provide a patient an improved outlook.

Instructor Eric Stalloch says the key is getting people to look at their cane as a piece of adaptive equipment, used for exercise and mobility versus a sign of vulnerability. This video by Post-Standard photographer Frank Ordonez accompanies the article, demonstrating techniques for people who use canes or are in wheelchairs to break away from assailants.

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Image by Rosey-OR, used under its Creative Commons license.

We start the week picking up on where we left off last Friday, looking at how Developmental Disabilities Awareness Month is being observed in cities and town across the United States. Much like the people they are supporting, each community’s activities have their own unique flavor.

So far, the best visuals can be found in The Herald-Dispatch, of Huntington, West Virginia. A local school for children with disabilities held a balloon launch on a clear March day and Tom Nunnery provided photos of the events for the newspaper’s online media gallery. The brief writeup accompanying the photos says a 5K Run/Walk and ChiliFest/Craft Show are planned for later in the month.

Inclusion is the the overarching goal of Developmental Disabilities Awareness Month, so getting children of all ages involved is critical to overcoming negative and false perceptions. In the community of Lexington, North Carolina, The Dispatch reports that national honor society students will be organizing activities in support of the “Spread the Word to End the Word” campaign, and a dance will be held at the town’s YMCA.

WMFD-TV says activities in Richland County, Ohio, include a coloring contest for third-graders and a community awareness day about employment and career training for people with disabilities. For those of you with Windows Media Player plugin, the station’s website has a video of county commissioners awarding a proclamation to the Element of Art Studio and Gallery, which will exhibit self-portraits by people with disabilities made in different mediums during March.

On Friday, we discussed how organizations advocating for people with disabilities on a national level are working toward increasing voter turnout and civic engagement during this year’s election cycle. As Jo Spargo writes in a letter to the editor of the West Side Leader of Akron, Ohio, Developmental Disabilities Awareness Month “paves the way toward improving the quality of life” for these people; which is why she took part in a rally at the Statehouse in Columbus on March 1 along with other support professionals and people with disabilities.

The issue most directly impacting people with disabilities in this year’s election will be whether Medicaid spending is protected or reduced in the federal budget. Both The Arc and the American Association of People for People with Disabilities provide online resources for people who want to learn more. In an op-ed on Forbes.com, attorney Bernard A. Krooks asks readers to consider all that the Medicaid program provides for people with disabilities:

Protecting Medicaid, in particular, is essential for people with special needs who do not have an employer or private health care coverage to meet their daily living needs. Medicaid provides critical services for acute care, therapy, long term care, and assistive supports. Part of the ‘Don’t Cut Our Lifeline’ campaign is to show that home and community services can be a better option for people with special needs rather than more expensive institutional services.

Hopefully, some of you will be inspired to organize your own Developmental Disabilities Awareness month observation. Please share any activities you’re aware of in the comments section.

Image by alibree (Alison H), used under its Creative Commons license.

On February 26, 1987, President Ronald Reagan designated March as the National Developmental Disabilities Awareness Month. The language of the official Proclamation indicates that, even in this time, before the 1990 Americans with Disabilities Act, Americans were changing their perceptions about people with disabilities. It lauded efforts by the federal government and the private sector to work with advocacy organizations on measures that would help these people achieve “their full potential in school, at work, or at home.”

Twenty-five years later, it can be said that the primary focus of the month remains the same; however, the 2012 campaign is also spreading a message of empowerment for people with disabilities to have their voice heard during this election cycle. An un-authored op-ed in Wednesday’s Baltimore Sun reported that voter turnout by people with disabilities in 2008 was a mere 46%. With so many of the mainstream national issues directly impacting the lives of people with disabilities, it is critical for this population to make sure their voice is heard in all levels of government.

Affordable healthcare is one of the signature issues of this election cycle. Potential cuts to the Medicaid program will hit this population the hardest according to organizations that advocate for people with disabilities. The Arc has created a “Don’t Cut Our Lifeline!” Medicaid Toolkit with information and resources for people to learn about and share the impact of a reduction in benefits. The Web page includes videos made by families who rely on the program to provide care for their loved ones that they would not otherwise be able to afford. For the Keaton family of Milton, West Virginia, it means parents Amanda and Greg can continue to work at their jobs while son Graysen can continue to receive care from qualified nurses:

The American Association for People with Disabilities, meanwhile, has been organizing the community on a number of levels in support of Medicaid. As we’ve noted on a few occasions, President and CEO Mark Perriello has made increasing voter turnout by people with disabilities a priority, and on their Web page about Medicaid he urges everyone to look beyond the policies and into the individual people who will be affected by a decision to reduce benefits:

If you see Medicaid only in terms of numbers or names of programs, you miss the point. Medicaid touches real people’s lives. It’s about people who contribute to their communities and live the lives all Americans deserve — that’s the strongest argument to preserve Medicaid.

Do you know of any special events taking place during Developmental Disabilities Awareness Month? Share in the comments section.

Image by Maryland GovPics, used under its Creative Commons license.

Was it really only just this past Monday we wished for a way to watch recaps of presentations from the 27th Annual International Technology & Persons with Disabilities Conference being held this week at California State University, Northridge (CSUN)? Well, we didn’t have to wait too long for that request to be fulfilled, thanks to an online channel making its debut at the San Diego conference.

Today marks the launch of WebAble TV, described in the press release as a new online TV channel “dedicated to providing accessible live and on-demand interactive coverage of the issues, activities and events important to the community of people with disabilities.” It is the brainchild of The Paciello Group, an accessible technology solutions company located just up the road in Nashua, New Hampshire. The company’s founder, Mike Paciello, is the author of Web Accessibility for People with Disabilities and chairman of the 2012 CSUN conference.

Today’s session won’t get going until 11:00 am on the East Coast, but judging from the WebAble TV preview, it looks like they’ll have a re-broadcast of Tuesday’s keynote address from actress/comedienne Geri Jewell up sometime today with more content to follow.

Of course, WebAble TV didn’t launch as an empty shell. The channel is hosted and produced by the Web-based network, TV Worldwide, which stakes the claim of being the “first Internet TV network of community-based Internet TV channels,” and has been used by a multitude of companies, agencies, and associations since 1999. So they have ready-made content at their disposal, including panel discussions from last year’s Association of University Centers on Disabilities annual conference and an interview with Dr. Temple Grandin, whose life was made into a 2010 TV movie that earned seven Emmy awards.

In addition to original programming, WebAble TV will also proactively look for other Web content to post in its “recommended videos” section. They’ve already assembled half a dozen inspiring clips featuring people with disabilities, including this one of golfer and tennis pro Butch Lumpkin:

OK, so maybe watching the streaming sessions won’t be quite as nice as actually being in San Diego during the month of March, especially now that winter has finally come to New England. But it’s great to see another resource for sharing information and stories about the many organizations and people in the U.S. and across the world making life matter for people with disabilities.

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Image by artsaccess_sa, used under its Creative Commons license.

A Chicago-area man is finally getting the opportunity to learn what it feels like to live in his own home, following a victory in federal court that enables people with disabilities to use their government support payments to move into community housing.

David Cicarelli was the lead plaintiff in a 2005 class action suit seeking the right for people with disabilities to have greater freedom of choice over how and where they live. While it took over five years for an agreement to be reached by the teams of attorneys representing all the parties, advocates for people with disabilities say the decision sets a precedent that could impact the lives of thousands of Illinois residents currently living in larger facilities.

But last Friday, the only thing that mattered to the 38-year old Cicarelli was the chance to have his own room for the first time in his life. Reporter Burt Constable and photographer George LeClaire of the Daily Herald joined David and his parents on moving day to capture the excitement, and the decorating decisions:

David says his portable fire pit will go next to the patio in the fenced-in backyard. The basement party room is the spot for the whimsical wooden maid figurine, which will sport a candy dish on her outstretched tray. That freshly painted bright blue wall in his bedroom — the first time as an adult that he’s had a room of his own — was chosen by David to match a wall at the Wheeling High School football field he can see from his house.

With four roommates sharing the two-story house, Cicarelli is sure to have a full social schedule. The location allows each of them to walk or take a bus to their respective jobs. The residential director, Sam Tenuto, tells Constable that caretakers are provided 24 hours a day, seven days a week, to ensure the men have “as much freedom and responsibility as they can handle safely.”

Constable saves some of the best news for last when he reveals that the new program will cost less for Illinois taxpayers than maintaining facilities that house hundreds of people with disabilities at a time. It will be interesting to note similar benefits in other states as they move toward welcoming people with disabilities into their communities.

We noted Virginia as one state in particular a few weeks ago, as legislators begin formulating a plan that will give more than 1,000 people with disabilities the chance to live independently in the same communities as other citizens.

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