From the Editor’s Desk

The Annual Consumer Conference will be held on June 18, 2015 at the Four Points Conference Center in Norwood, MA. The conference is an invitation only event. If you would like to attend please contact your Vocational Rehabilitation (VR) Counselor.

In this edition of the Consumer’s Voice we bring you the opportunity to track your Massachusetts Bay Transit Authority (MBTA) experience. The MBTA Advisory Board has developed a tool to measure your MBTA travel experience. By sharing your transit experience we hope it will assist the MBTA improve service.

Girard Plante brings us the story of Paul Shepard. This is a story of dignity and respect. Sadly, Paul died before this article could be published.

A new contributor, Olivia Nelson a Boston University Student, brings us her article on the progress the MBTA is making on accessibility.

We are looking for articles for the Consumer’s Voice and images for the featured artist section. If you are interested in writing for the Consumer’s Voice or you are an artist with an image to share please contact me by email at elaine.mchugh@mrc.state.ma.us or call me at 617-204-3665.

Help us reduce paper consumption by going green. To receive the Consumer’s Voice electronically please send your request to: consumer.involvement@mrc.state.ma.us

Americans with Disabilities Act 25th Anniversary 1990-2015
Elaine McHugh

Join us Wednesday July 22, 2015 on Boston Common to celebrate the 25thAnniversary of the Americans with Disabilities Act (ADA) as we mark this milestone with a march, speakers, and entertainment. It is a better world today thanks to the ADA!

There are lots of opportunities for people to exhibit, donate and become involved with the ADA 25th Anniversary.Please go to the ADA website to see how you can become involved. http://www.newenglandada.org/ada25boston

Go Do Good Things: A Room Dedicated to the Legacy of Former Commissioner Elmer Bartels
Daniela Trammell, MRC Director of Marketing

It is with great pleasure that the Massachusetts Rehabilitation Commission (MRC) announces the newly dedicated Elmer C. Bartels Conference room.

This month, the MRC dedicated a room on the second floor of our Administrative Office in Boston to the memory and spirit of former Commissioner Elmer C. Bartels. The dedication encapsulated Commissioner Bartels’ passion of his pursuit for economic independence and equality for people with disabilities.
“Having known Commissioner Bartels for many years, I, like many, stand on his shoulders and owe him a debt of gratitude for all the work he did through the course of his life that enabled thousands of people with disabilities to live independently in the community and go to work”, stated MRC Commissioner Charles Carr.

Commissioner Bartels was a dedicated man who gave so much of himself to the advancement of the disability community. Joanne Bartels-Stanway, daughter of Elmer Bartels, spoke at the dedication of how every day her father looked forward to going to MRC; he did not see his role as “work” but rather him just doing the right thing. This was a theme he carried with him throughout life, it did not matter if he was meeting with policy-makers, MRC staff, consumers, or the Average Joes, Bartels charged them all to “Go Do Good Things.”

One would wonder if these words echoed in the ears of the policy-makers while they were passing budgets and legislation during former Commissioner Bartels’ tenure, because Bartels made so many inroads for people with disabilities here in Massachusetts, the Commonwealth is now a leader in the Disability Movement.

An innovator, he established MRC as a premier public vocational rehabilitation (VR) agency, while also having the foresight of developing an Independent Living program in the mid-1980s long before any other VR agency.
Commissioner Bartels also charged his staff and community advocates with the notion of doing good things. Ready to meet people where they were in life, he valued the times he had with people in the hallways, in the coffee shops, and on the streets.

Commissioner Bartels enduring legacy will live on through this room and in his spirit as captured in a short video Eric Neudel, of Storyline Motion Pictures, provided the agency thus inspiring the next generation of MRC employees and disability advocates to become great leaders and “Go Do Good Things.”

Paul Shepard
Girard Plante

Paul Shepard’s life was declining daily. Hospice had taken charge of his care. With no time to waste, I shifted my assignment into high gear and contacted Paul’s program manager Linda Barry to assist in capturing his narrative.

I never met Paul, but somehow I feel connected to him. His Cerebral Palsy and inability to speak are not new to me as my 34 years actively advocating has introduced me to numerous people in similar situations.

Yet 26 years as a journalist has taught me to swiftly craft a story of the human aspect of the many people I’ve interviewed without ever meeting. Catching enough substance to do justice to a life that has more merit than most outsiders imagine required some help.

Paul’s responses to my questions were spiced with the astute assistance of his primary caregiver, Josephine. “I have been with Paul six years, so I knew a little bit more about him,” she proudly proclaims.

Paul was born and raised in Worcester. Though he never attended school, Paul’s devoted and enlightened mother made sure he was exposed to as much of the “outdoor world” that she could offer. All that changed abruptly at the tender age of eight when Paul’s loving mother died. State officials decided Paul’s fate by placing him in nursing homes for decades, until 2002. 

“They (personnel) never mistreated me in the nursing homes,” Paul emphasized. His current residence is the Winthrop Avenue group home in Leicester, administered by the Seven Hills Foundation. Paul happily added that his quality of life improved upon entering the group home. “My life was enhanced!”

The 76-year-old had a keen eye for the world his mother introduced him to. “I love taking photographs of the ocean and landscape,” he laughs.

Paul also harbored a host of interests, explains Josephine: “He loved going to the park. Shopping at craft stores. Watching old movies and good comedies. Attending the Martha’s Vineyard Sharks baseball games in Oak Bluffs. And going to social events such as community dances.”

Although Paul has no family, his caregivers are a true testament to understanding and meeting his emotional needs. “At times when I am depressed, I enjoy when people read to me or just talk about anything,” Paul said.

The highlight of his life arrived two years ago when Paul visited the White House to meet with President Barack Obama and First Lady Michelle Obama. “He never stopped talking about that day,” Josephine chimed in as Paul laughed approvingly.

Despite his disability, Paul emphatically expressed his two essential ingredients to life. “I want to be treated with respect and dignity just like anybody.”

In Memory 1937-2014: Mr. Shepard was interviewed while receiving hospice services. He passed away at home on December 4, 2014

Advocacy Opportunity: Track Your MBTA Experience 
Paul Regan, Executive Director, MBTA Advisory Board

The MBTA Advisory Board, a member of the Boston Region Metropolitan Planning Organization (Boston MPO), has developed a tool to measure the experience of the typical transit user and their level of satisfaction with the service they receive. To help us track your transit experience, we are asking people to note their travel experience for at least two weeks.

The process is simple: log in at http://www.transitdiary.com/login/ create an account and set your personal preferences (by far the longest part of the Transit Diary experience). Then, on your cell phone, tablet or at your desk or laptop, spend about 30 seconds logging the information about your journey.

Unlike other surveys, the Transit Diary will give us a real sense of the typical commute as opposed to a snapshot of one day. We will be able to see trends and problems related to mode, time of day, weather, seasons and other factors. We are very excited about the value of this tool to make the transit system better.

Our message to you the user of the MBTA is simply that you paid for it, now own it. We hope this tool will help us all get the transit service we deserve. The Advisory Board invites you to participate in using this survey tool to help us make the MBTA a better service for those who depend upon it.

This article first appeared in the Disability Consortium Policy Update for December 15, 2014.

Massachusetts Bay Transportation Authority Making Progress on Accessibility for People with Disabilities
Olivia Nelson

For people who live in and around urban areas, one of the best perks is access to public transportation. For many Bostonians, using the Massachusetts Bay Transportation Authority (MBTA) is a necessary part of daily life. 

Girard Plante is no exception. Plante is the co-chair of the Commission on Disability in Newton, and a longtime advocate for people with disabilities, often working on behalf of the Boston Center for Independent Living at the State House. He has also been a journalist for 26 years, and works as a columnist for the Boston Post-Gazette and as a contributing writer and editor for Consumer’s Voice, a newsletter published by the Massachusetts Rehabilitation Commission.

Because Plante frequently travels from his home in Newton into downtown Boston, he needs to rely on public transportation, no easy feat, considering Plante uses a power wheelchair. He is one of many people with disabilities who have learned to make the nation’s oldest and fourth-largest public transportation system work safely and efficiently for their travel needs. And while portions of the MBTA are still outdated and inaccessible, many say the system overall has come a long way in becoming safer and more accessible for those with physical disabilities.

Plante, 54, has witnessed the evolution of disability rights in the United States throughout the past 40 years, ever since his spinal cord was damaged in a bicycle accident at age 14. Many of the changes Plante has observed stem from federal laws like the Rehabilitation Act of 1973. Specifically, Section 504 protects people with disabilities from discrimination, and allows them to participate in the public school system. But it was the Americans with Disabilities Act (ADA) of 1990 that Plante credits with much of the success for prohibiting discrimination against those with disabilities. “It’s the most sweeping disability rights legislation in history,” Plante said.

In 2006, the MBTA settled a class action lawsuit filed in 2002 by Greater Boston Legal Services (GBLS) under the ADA, and agreed to fund $310 million in projects to fix accessibility problems that denied people with disabilities equal access to MBTA services. Many of these projects are still ongoing, but construction at MBTA stops like Kenmore, Harvard Square, and Government Center are a direct result of the lawsuit. 

Efforts to make better accessibility along MBTA routes include providing continuous elevator service at stations, closing gaps between subway cars and platforms, and improving training and customer service for MBTA employees. Ramps to help wheelchair user’s board subway cars are now provided at some stops, especially along the Green Line, where riders sometimes have to walk up several stairs to get inside older models of the train.

The Massachusetts Office on Disability (MOD) has been pleased so far with the work the MBTA has done, said Deputy Director Allan Motenko.

“The MBTA has been committed not only to efforts to make the system itself more accessible, but they also really worked to engage people with disabilities in the MBTA community, to understand the concerns of people with disabilities, and to be responsive to those concerns,” said Motenko.

One area where Motenko said the MBTA needs to stay “consistently vigilant” is employee training in working with people with disabilities.

“The MBTA needs to continue what is already a robust training program,” Motenko said. “You can never ever have too much training. I think that’s true for the T.”

Spaulding Rehabilitation Hospital in Charlestown provides support for patients who are newly disabled, teaching them how to safely use public transportation.“It doesn’t do justice to just do rehabilitation within the world of the hospital,” said Dr. Cheri Blauwet, the Disability Access and Awareness Director at Spaulding, and a lifelong wheelchair user. “You have to practice skills for the real world too, outside of the hospital.”

Part of Spaulding’s rehabilitation program for patients who are newly disabled is to teach them how best to navigate their home environment, whether that’s getting in and out of a car, or on and off the subway. Spaulding also connects patients with mentors: longtime wheelchair users who can pass insider tips and tricks on to the patient who is newly disabled, which may include the best ways to navigate public transportation.

“I think the MBTA has done a great job of trying to update and optimize (the system) as much as possible,” Blauwet said. As someone who used to take the Orange Line regularly, Blauwet said “some stops in the system are still not accessible, but the MBTA has definitely made the effort to increase access.”

“The newer [the line] is, the more accessible it is,” said Blauwet. “And some lines are better than others.” 

For riders with a disability looking for an alternative to some of the older lines can utilize the MBTA’s RIDE paratransit service, a door-to-door bus service in compliance with the ADA. Rides range from $3-$5 one-way, and serve passengers who live not only within Boston, but also in towns north, south, and west of the city. Heather Hume, manager of paratransit programs, said the average number of daily RIDE riders is 7,000 on a weekday, and between 2,500 and 2,800 on the weekend. MBTA riders with disabilities can also access training programs through the MBTA. 

“Over the past number of years since the fixed route modes have been updated, the MBTA has been able to introduce programs, such as travel training,” said Hume, in an email interview.

The MBTA launched a travel independence program in partnership with the non-profit SCM Door2Door Transportation, to help riders with disabilities, become more confident using the fixed route systems, instead of having to rely solely on paratransit programs like The RIDE.

Boston is 384 years old, that means much of the original architecture of the city was not designed with accessibility in mind. Old brick sidewalks often pose a challenge to wheelchair users looking to access MBTA stations located in historic neighborhoods.Neighborhood associations and historical societies often oppose removal of brick sidewalks to bring the city into compliance with the ADA, claiming the brick should be kept to preserve the city’s historic aesthetic.

Spaulding’s Dr. Blauwet said the controversy in the neighborhood is a “rigorous debate.” “The bricks are really challenging. The smoother the surface, the better,” she said. “Replacing the brick enhances everyone’s ability to move safely and efficiently.”

But as far as the MBTA goes, now more than ever there is a “greater and better commitment” to disability rights, according to Massachusetts Office of Disability (MOD) Deputy Director Motenko. “There’s a more collaborative spirit and effort to really understand the concerns of the community and respond to them,” said Motenko.

“You can make curb cuts, you can show municipalities there’s a statewide regulation and you can point out it’s tied to federal funding. That’s the easy part. But the attitude, that’s the big barrier,” said Plante. “Because still today, there are those who view people with disabilities as not having possibilities so the attitudinal barriers are harder to break down than the physical barriers.”

The AT Exchange in New England
www.getATstuff.com

The AT (assistive technology) exchange is MassMatch’s free AT device exchange program. The Equipment Exchange is similar to a “want ad” where pre-owned AT is listed in order to put people looking for AT in contact with sellers or donators. The Equipment Exchange is an opportunity to re-sell or buy AT for a lower cost than new items; such as, wheelchairs, computers and daily living aids.

To buy, donate or sell used AT, call the toll free MassMATCH INFO-line at:
1-866-682-9955, 1-617-204-3851(V), 1-617-204-3851(TDD) or visit the website at www.getATstuff.org

Becoming an Individual Consumer Consultant (ICC)
Leslie Wish

The Massachusetts Rehabilitation Commission’s Consumer Involvement Program makes a special effort to form cooperative relationships with those individuals who are known as consumers or recipients of services.

We are interested in applicants for the ICC program that have skills and experiences valuable to the needs of the MRC. The program is open to both MRC consumers and their immediate family members.

The ICC program is designed to allow MRC clients to gain work experience and gain employment skills working on projects as an ICC. ICC projects are not considered full time work, just one step on the road to employment.

These projects are short term, one to three days, up to one month in length, and there is no guarantee there will be consistent work. Every effort is made to accommodate all ICC’s with regard to their skills and abilities.

If you are interested in becoming an ICC, please contact Leslie Wish, Program Coordinator for Consumer Involvement, at 617-204-3771 or by e-mail: leslie.wish@mrc.state.ma.us.

Go Green: Save a Tree! Have the Consumer’s Voice sent by e-mail. If you are interested please e-mail your request to: Consumer.involvement@mrc.state.ma.us

Upcoming Events:

2015 SRC meeting times: 

March 10, 2015
1:00pm-3:30pm
South Region-Plymouth Public Library

June 9, 2015
1:00pm-3:30pm
North Region-Lawrence Public Library

September 8, 2015
1:30pm-3:30pm
West Region-Springfield Public Library

December 8, 2015
1:00pm-3:30pm
Metro West Region-Morse Institute Public Library

Other Meetings:

March 18, 2015
HCAP Advisory Committee
Springfield, MA

June 18, 2015
Annual Consumer Conference
Four Points Hotel Norwood, MA

July 22, 2015
ADA 25th Anniversary
Boston Common, Boston, MA

 


This information is provided by the Massachusetts Rehabilitation Commission.