Inclusion Daily Express -- July 1, 2003

INCLUSION DAILY EXPRESS

http://www.InclusionDaily.com

Your quick, once-a-day look at disability rights, self-determination
and the movement toward full community inclusion around the world.

Tuesday, July 1, 2003
Year IV, Edition 107

This front page features 8 news and information items, each preceded by a number (#) symbol.
Click on the"Below the Fold" link at the bottom of this page for the rest of today's news.

QUOTES OF THE DAY:
"I didn't plan on doing this . . . We're just looking for the basic accommodations."
--Anthony Trocchia, who staged an impromptu protest in New York City last week after four buses in a row were unable to give him a ride because their wheelchair lifts were broken (First story)

"Frankly, our lives are at stake."
--Diane Coleman, president of Not Dead Yet, explaining why her organization and others are concerned about a Website that portrays people with some disabilities as being near death (Second story)

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# ADVOCACY / TRANSPORTATION

Disgusted Bus Rider Stages Impromptu Protest
By Dave Reynolds, Inclusion Daily Express
July 1, 2003

NEW YORK, NEW YORK--When he left home Thursday morning, Anthony Trocchia had no intention of becoming the center of a media event.

He just wanted to buy some books.

But when bus after bus came by with no working wheelchair lift, Trocchia, who is president of Disabled in Action of Metropolitan New York, decided it was time to take action.

He parked his electric wheelchair in front of the fourth Green Line bus that had a broken lift -- and refused to move.

As the bus sat idle at the corner of Queens Boulevard and Jamaica Avenue, Trocchia pulled out his cell phone and called newspapers and television stations to report his act of civil disobedience.

Several members of the Queens Independent Living Center, which is across the street from the bus stop, heard about Trocchia's impromptu protest. Soon he was joined by two blind people and five people in wheelchairs from the center.

"I didn't plan on doing this," Trocchia explained. "We're just looking for the basic accommodations."

The traffic at the busy intersection was soon snarled as drivers and passersby stopped to see what all the commotion was about.

Over the next two and a half hours Trocchia and his cohorts were visited by several reporters -- even a news helicopter hovered overhead at one point.

"I was out here trying to take the bus," Trocchia told WNBC-TV. "Four buses came with broken lifts. I finally got disgusted and decided to block the bus."

When a Green Bus Lines executive asked for Trocchia's cooperation, telling him that three buses with working lifts were waiting for him, Trocchia refused.

"I want to bring embarrassment to this company that is long overdue," he told one reporter.

"This has been going on a long time. It's not just a matter of getting on a bus now and being whisked away. Now we have a chance to get it on the news."

When a police sergeant asked him to move the protest onto the sidewalk, Trocchia said he would stay in the street as long as news photographers were still arriving.

Then the police told the bus driver to back the bus up and steer around the protesters, but they quickly maneuvered their wheelchairs to keep it from moving.

Trocchia finally stopped his demonstration when he felt he had made his point.

Green Bus Lines is one of several private companies that provides bus service in the city. Company officials blamed the city for not maintaining lifts on the buses that the city owns.

The Americans with Disabilities Act of 1990 requires buses to have working wheelchair lifts.

The company issued an apology to Trocchia for any inconvenience it may have caused him.

Related resource:
Disabled In Action of Metropolitan New York
http://www.disabledinaction.org/

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# ADVOCACY

"Living With Dying" Project Wrongfully Includes People With Disabilities; Advocacy Groups Want Changes
By Dave Reynolds, Inclusion Daily Express
July 1, 2003

CHICAGO, ILLINOIS--Several disability rights groups and individuals have united to express deep concerns about a new Website which, they say, lumps together people with disabilities and chronic illnesses with those who are in the last stages of terminal illnesses.

The consortium, led by Not Dead Yet, wrote a letter to the heads of the Robert Wood Johnson Foundation and the Partnership for Caring, which fund "Last Acts", a project dealing with "end of life" issues. Of particular concern is the new Website entitled "Last Chapters", which includes personal stories of 11 people "living with dying". The stories are from actor Michael J. Fox, who has Parkinson's Disease, along with a person who has Crohn's Disease, and another who has rheumatoid arthritis -- none of which are terminal conditions.

The disability rights advocates are asking to meet with the foundations and Last Act organizers to discuss the potentially negative consequences of such portrayals.

"Last Acts is misleading the public and is wrongly perpetuating the dangerous myth that life with a disability is the beginning of a death sentence," Not Dead Yet wrote in a media statement.

"Initially, the focus of these groups was on making services better for people in the last stages of an terminal illness," said Stephen Drake, Research Analyst for Not Dead Yet. "Over the last couple of years, though, there's been an alarming broadening of their agenda. For example, we've seen proposals to extend the definition of 'terminal' to include people with incurable disabilities and chronic conditions whose future lifespan can be measured in years."

"We've also witnessed a drive to change probate codes and health statutes in various states to make it easier to deny, withdraw, or withhold treatment from people with nonterminal cognitive disabilities," Drake added.

Diane Coleman, President of Not Dead Yet, said such projects spend millions of dollars to promote "end of life" advocacy, while increasingly calling significant disabilities and chronic illnesses "terminal".

"That means they are influencing disability-related public policy without including disability advocates in the process," Coleman said. "It's unrealistic to think that we can counteract that kind of overwhelming public relations machinery without significant resources. Frankly, our lives are at stake. That's the crux of what we want to discuss with these organizations."

Related resources:
Letter to Partnership For Caring and Robert Wood Johnson Foundation (Not Dead Yet)
http://www.notdeadyet.org/docs/lastacts.html
"Last Acts"
http://www.lastacts.org/
"Last Chapters: Stories About Living with Dying"
http://www.lastchapters.org/index.cgi

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# ADVOCACY

Disability Groups Use Special Olympics Momentum To Challenge Irish Government On Supports
By Dave Reynolds, Inclusion Daily Express
July 1, 2003

DUBLIN, IRELAND--Two days after the close of the 2003 Special Olympics World Summer Games, a federation of 60 disability groups demanded the government secure more services and supports for Ireland's 120,000 citizens with disabilities.

"The Special Olympics has really brought home to Irish society the positive aspects of disability and has shown how people with disability can contribute. The job is to continue that momentum and bring that attitude into Government policy," explained John Saunders, chairman of the Disability Federation of Ireland, who hoped the event would give officials "something to think about" during the summer break.

Among other things, the groups are demanding accessible housing; "suitable accommodation" for more than 1,100 seniors placed inappropriately in psychiatric hospitals; "proper accommodation" and support for almost 1,000 young people with chronic illnesses; support for families that care for a relative with a disability at home; and making permanent a temporary community employment program that employs people as personal care assistants.

The groups insist that all services and supports be protected by a new Disability Bill to guarantee the rights of people with disabilities.

The government's 166 deputies and 60 senators were invited to Tuesday's gathering. Only about 60 attended.

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# CONTRIBUTION / FAMILIES

Teen Honored For Contributions To Her Community
July 1, 2003

FOX CHAPEL, PENNSYLVANIA--The following four paragraphs are excerpts from a story in a recent edition of the East Allegheny County Herald:

Nineteen-year-old Katie Apostolides keeps a schedule that would make a busy person feel lazy.

A 2003 Fox Chapel Area graduate, she volunteers with physically-challenged patients at the Children's Institute and teaches sign language to the hearing-impaired at the Sharpsburg DART program. Apostolides earned straight A's, is active in her church youth group, plays piano, takes dance lessons and was a cheerleader for four years.

All that, despite having been diagnosed at birth with Down's Syndrome.

"I'm just a typical teen," said Apostolides, who clearly is anything but.

Entire article:
"Fox Chapel girl shines" (East Allegheny County Herald)
http://www.pittsburghlive.com/x/herald/s_141912.html

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# FAMILIES / COMMUNITY LIVING

Families Develop Microboards To Oversee Supports
By Dave Reynolds, Inclusion Daily Express
July 1, 2003

MEMPHIS, TENNESSEE--Stan Brunson's brothers, Tommy and Johnny, were institutionalized when their father died.

Stan, who was 17 at the time, vowed that he would get them out of the institution as soon as he could.

Now, 23 years later, Stan has made good on his promise.

Last month his two brothers, who have mental retardation, moved into their own townhouse.

Stan was able to help his brothers by forming a microboard -- a non-profit organization that oversees their services and manages payment for their supports through a Medicaid Waiver program. The microboard is even in charge of hiring and firing caregivers.

It cost about $800 a day to house people in Tennessee's institutions. State officials say it will cost the same or a bit less to support the Brunson brothers in their new home.

Stan says his brothers are receiving much better care and are already blossoming.

The Memphis Commercial Appeal reported that more families want to establish microboards as an alternative to institutions and to traditional community providers where there has been a recent increase in abuse and neglect reports.

Lawyers are asking the state to release $1.5 million from court fines to fund more microboards.

Critics of the plan include Vic Thayer, the father of a resident at Arlington Developmental Center. Thayer says monitoring the finances would be "a nightmare" for the state.

Related articles:
"Sibling love, official setup reunite three brothers" (Memphis Commercial Appeal)
http://www.InclusionDaily.com/news/03/red/0701a.htm
"Microboards 'rescue' retarded relatives" (Memphis Commercial Appeal)
http://www.InclusionDaily.com/news/03/red/0701b.htm

Related resource:
Microboard and Microboard Association Design, Development and Implementation (David & Faye Wetherow)
http://www.communityworks.info/articles/microboard.htm

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# TODAY'S FEATURED COMMUNITY LIVING WEBSITE

Consumer Direction in Personal Assistance

An important aspect of independent living is home-based and consumer-directed care. This multimedia training is a timely solution to increasing demand for consumer-managed home care workers.

Instructors, independent living centers or health and human service agencies that provide Personal Assistant Services use this training package to recruit, train and maintain personal assistants and other non-medical home caregivers.

It presents a candid and balanced overview and includes important perspectives of people with disabilities, caregivers and agency managers. Each of the 4 units is introduced by Judith Heumann, former Assistant Secretary, US Department of Education. She is a person that uses a wheelchair as well as dependable personal assistants.

http://www.disabilitytraining.com/pacs.html

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# EXPRESS EXTRA!!!

Quote worth noting:
"If I seem to take part in politics, it is only because politics encircles us today like the coil of a snake from which one cannot get out, no matter how much one tries. I wish therefore to wrestle with the snake."
--Mahatma Gandhi

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# BELOW THE FOLD
Click here for the rest of today's disability-related news:
http://www.InclusionDaily.com/news/03/btf/070103_53.htm

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