Consumer’s Voice Summer 2012
From the Editor’s Desk
Elaine McHugh

We are very excited to have finally moved to our new office space at 600 Washington Street in Boston, MA.  We are located within a very short distance from the Orange line Chinatown T stop and we are still close enough to walk from South Station.  The area has a lot of very good restaurants and is convenient to shopping at Downtown Crossing.

As with all moves everything did not work according to plan.  Some minor details like the phones, who sits where and the heat is not working as well as we would like.  Also, the MRC mailing machine mechanism was different than the one at Wormwood Street and delayed the mailing of the Consumer’s Voice Spring Edition.  Hopefully, we will continue to debug our new environment and resume a more normal work schedule.

The Summer Edition includes a wonderful article by Girard Plante.  As you know Girard is an accomplished journalist.  Using his professional skills he was able to obtain an interview with Richard Mangino.  Richard is the recipient of a double hand transplant and the Consumer’s Voice has been following his progress.  Girard’s interview will bring you up to date on Richard.

We also welcome a new writer, Donna DeGuglielmo.  Donna writes about her experience living with Aphasia. 

If you or someone you know is interested in writing for the Consumer’s Voice please contact me at elaine.mchugh@mrc.state.ma.us.

 

Appointment of Brenda Clement

The Citizens' Housing and Planning Association (CHAPA) is pleased to announce the appointment of Brenda Clement as the new Executive Director. 

Brenda is a nationally recognized expert in affordable housing, with over 20 years of experience in the field.  She is currently the Executive Director of the Housing Action Coalition of Rhode Island, a statewide advocacy organization, and former Executive Director of the Housing Network, the Rhode Island trade association for CDCs.  Brenda is also a founding member of the New England Housing Network, the regional organization initiated by CHAPA in 1995.  She serves on the Board of the National Low Income Housing Coalition.

Brenda brings a wealth of managerial and public policy advocacy experience to CHAPA’s Executive Director position.  She is viewed by many as the key housing advocate in Rhode Island, and has been awarded numerous honors, including serving as a Fannie Mae Fellow, receiving the Bank of America’s Local Hero Award and the Channel 6 Freedom Torch Award. She is known as someone who is passionate about housing and community development work and has tremendous personal integrity.

We enthusiastically welcome Brenda to CHAPA.

 

Patrick-Murray Administration Honors Individuals and Families for Work with the Disability Community

The "Celebrating Families" event honors families from across the Commonwealth for commitment to inclusion and self-determination for people with disabilities.

The Patrick-Murray Administration honored individuals and families from across the Commonwealth for their innovative work to provide care, community inclusion and self-determination for people with disabilities.

During the event at the State House, Secretary of Health and Human Services Dr. JudyAnn Bigby and Department of Developmental Disabilities (DDS) Commissioner Elin Howe delivered the honors as part of its 16th annual "Celebrating Families" event.

"I am proud to celebrate the many significant contributions that families make on behalf of people with disabilities across the Commonwealth," said Governor Deval Patrick. "These awards underscore just how vital family members are in ensuring people with disabilities have a full range of opportunities to contribute to our communities."

"Each and every day, family members join together with staff at the Department of Developmental Services to promote dignity and independence for people with disabilities," said Lieutenant Governor Timothy Murray. "The Patrick-Murray Administration applauds all of today's award recipients for their leadership and advocacy on behalf of their loved ones."

“Families and individuals play invaluable roles as advocates and champions for people with developmental disabilities,” said Secretary of Health and Human Services Dr. JudyAnn Bigby. “We are pleased to recognize all the diverse and meaningful contributions people make to promote independence and community engagement for our consumers.”

“People with disabilities and family members are invaluable partners in our work to ensure people with disabilities have opportunities to make meaningful contributions to communities across the Commonwealth,” adds Commissioner Howe. “Today we honor the many unique individuals that create genuine opportunities for people with disabilities.”

Celebrating Families Awards:

Louis “Lou” Nisenbaum of Lakeville received this year’s Gunnar Dybwad Leadership Award posthumously; the award is presented annually to an individual who has made a significant impact on enhancing the lives of individuals with disabilities in the Commonwealth. For more than 40 years, Mr. Nisenbaum worked to enhance the lives of individuals with intellectual disabilities and early on in his career saw the need to empower people with disabilities rather than simply provide them with care. He established a new community residence in Attleboro, one of the very first operated by a private non-profit organization. Mr. Nisenbaum later was instrumental in the Independent Living Movement guiding people to establish their own accessible apartments and exercise self determination in designing their own supports. He founded The Nemasket Group, a human service agency focused on community integration and was a co-founder of Mass Families Organizing for Change, an organization supporting families throughout the Commonwealth.

 

Brian Skotko, M.D., of Brookline received the Department's Allen Crocker, M.D. Health Services Award. A physician at Children’s Hospital Boston, Dr. Skotko was honored for his commitment to changing public perceptions about people with Down Syndrome and other intellectual disabilities. Dr. Skotko has become a nationally recognized advocate and spokesperson on Down Syndrome. He has been a major support in advancing all areas of public awareness for people with Down Syndrome and co-authored the award-winning book, Common Threads: Celebrating Life with Down Syndrome and, most recently, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. Dr. Skotko is also highly regarded for his research. In 2009, he was instrumental in expanding the Down Syndrome Program at Children’s Hospital Boston from one that treated individuals with Down Syndrome through age three to one that now treats individuals through age 18.

The Department also honored the following individuals and organizations for their unique contributions to the disability community:

Northeast Region

  • Drow/Kann Family (Patricia Drow, Ahmad Kann and Hadja Kann), Lowell
  • Cosgove Family (Yvonne, Phil and Josh), Merrimac
  • Family of Eugenie “Genie” Fontaine (Maria Lostimolo, Josephine Tiscione, and Stella Bendoris), Methuen

Metro Boston Region

  • Karen and Jeff Arbetter, Lexington
  • Pasterchik-DeGregory Family (David Pasterchik, Karen DeGregory and Christopher Pasterchik), Sudbury

Southeast Region

  • Draper Family (Susan, James and Jacqueline), Duxbury
  • Wilma Goodhue and Joan Mullare, Norwell
  • David Harrington and Steven Harrington, Plymouth
  • John Sullivan, Mansfield

Central Region

  • Michael Weiner, Medfield
  • Bill Cannata, Walpole

Western Region

  • Brooklyn Street Neighborhood Association, North Adams
  • Barbara Konopka, Greenfield

 

Robert Bass Retires as Director of New England Index

After 34 years as a faculty member at the Shriver Center and over 25 years as Director of New England INDEX, I wanted to let you know that I will be retiring at the end of June.  One of the things I’m most proud of is the development and growth of the MNIP from an original 10 member agencies in 1995 to our current 135.  It’s been great working with so many of you and I want to thank you all for your support and the great work you do providing information to people with disabilities. I also want to thank the funding agencies that have made this work possible, most notably the Mass DD Council, the Department of Developmental Services, the Massachusetts Rehabilitation Commission, and the Executive Office of Health and Human Services.

As I leave, I’m very happy to report that the incoming Director is John Rochford, currently the Director of Technology at INDEX, who has been responsible for the development of our technology infrastructure at INDEX and for our online products including disabilityinfo.org, the Support Conference so many of you use, and more recently, our Blog. 

John is strongly committed to continuing the work we’ve all begun and I’m sure will appreciate your continued support.  John will also be blessed to continue with a very energetic and committed staff.   They have made my job fun and exciting and I want to thank them publicly for all they do.

Over the next couple of months, I hope to have the opportunity to thank as many of you as possible personally, but meanwhile I wanted to be sure to let you know that New England INDEX is very active, forward looking, and in good hands.

 

Massachusetts Rehabilitation Commission Goes Global
MRC Commissioner Charles Carr

I had the opportunity to meet with a dozen advocates and people with disabilities from Iraq, Oman, Yemen, Kuwait and Jordan. The delegation sponsored by the U.S. State Department and hosted by WorldBoston, a non-profit agency dedicated to increasing public awareness about issues of global concern convened to find out more about a variety of disability policy-related issues, including the formation of the Disability Rights and Independent Living movements, assistive technology, community organizing, sports and recreation for individuals with disabilities and many other issues.

I wove the fabric of my own story of growing up with a disability into a discussion of how I and others in Massachusetts changed our lives as well as the lives of others, sometimes by resorting to civil disobedience to get the job done. 

I talked about living in an institution throughout my adolescence and early 20s and the struggle to fight for funding for the Boston Center for Independent Living (BCIL) and community-based services, such as personal care assistance and opportunities to live in affordable, accessible housing. 

Detailing how we organized people with disabilities in the state, and eventually nationally, to advance the cause of the Independent Living Movement helped illustrate how even small groups with a common cause and passion can make a difference.  Changes in federal and state laws are the result of great sacrifice and struggle over 30 years to accomplish great strides for individuals with disabilities and arrive where we are today as a nation.

Despite a whirlwind two weeks in the U.S. and a packed agenda that started in Washington, DC, and brought the group from St. Louis to Boston, the group was remarkably attentive and engaged as they listened through their Arabic translator.  Questions came readily, such as “tell me more about the ADA” and “how did assistive technology change your life” and “what organized sports do Americans have access to?” The questions were as varied as the people and countries represented in the room. They understood the logical progression of assisting individuals with disabilities transition into community living, with the next step of entering the workforce independently.  The MRC’s mission to assist people with disabilities so they may live in the community and become employed was a natural fit with the group’s interests. We ended the forum with the realization that all our countries, including the United States, have a lot of work to do before we ever see full community integration and acceptance. This small event was truly a global effort to develop an agenda for monumental change.

As part of the day’s agenda, the group visited the MRC-funded Assistive Technology Regional Center at Easter Seals in Boston.  Karen Langley, director of Assistive Technology and Community Support Programs within the Executive Office of Health and Human Services, and technology center staff gave the group a tour of the Center and demonstrated some of the many innovations that assist people with disabilities and elders so they may function more independently.  Karen noted that the group was really taken by the Dragon Dictate software that enables speech recognition.  They wanted to know how much it cost and where they could buy it before they left. Although originally designed for people with limitations in their hands to use a computer, they immediately saw the value to the general public and the universal design principle of “design for all.” They were also interested in books and videos written by people with disabilities telling their own stories. Peer support and peer role modeling were clearly in evidence and something the group fully understood and appreciated.

Access to the Internet will allow for this robust exchange to continue well beyond the few hours we spent together.  An exchange of email addresses, helpful websites and YouTube videos of people with disabilities engaged the group and wrapped up the afternoon. The group was confident that by sharing these resources and bringing back their experiences in the U.S., they will change the beliefs and attitudes of many people in their own countries to open the doors for their independence as people with disabilities.

 

Six Years of Creating Opportunities to Purchase Assistive Technology 
MRC Commissioner Charles Carr

In December 2011, the Massachusetts Assistive Technology Loan Program commemorated six years of successfully securing more than $8.6 million in low-interest loans for state residents with disabilities and their families so they can buy equipment and services that help them live, learn, work and play more independently. 

The program has made a vast difference in the lives of people like Roger.* Roger was born into adversity. His mother had advanced ovarian cancer while she was pregnant, a condition neither were expected to survive. Roger was born two months premature in 1951, a time when ‘preemies’ were promptly incubated with high concentrations of oxygen. Today, it is well known that this treatment causes permanent blindness in newborns.

Growing up blind in the 1950s and 60s, Roger defied the era's expectations, earning a Master’s Degree in Human Services and nurturing an abiding passion for audio editing. (His parents owned a movie theater while he was growing up, which Roger says sparked this interest). 

Roger’s work history is long and varied, from his early work in the movie house, to positions in the social services arena, to owning and operating his own sound studio. It's a history with numerous ups and downs, from taking highly-paid positions in high-tech to experiencing hard times that included losing his business, overcoming an aggressive cancer, and more recently, experiencing sudden and permanent hearing loss.

It was this last challenge that brought Roger to the Massachusetts Assistive Technology Loan Program. Initially, Roger says, he didn’t want to deal with the hearing impairment, but feelings of profound isolation lead him to an audiologist, who helped him get hearing aids covered by MassHealth. These helped him get around.  And the cheaper hearing aids meant he could listen to the radio, but his passion for sound engineering remained out of reach.

Roger’s colleague and a flyer that advertised free high-tech hearing screenings transformed his outlook. Roger’s colleague was interested in setting up a sound studio, and in employing Roger full-time at the studio. He urged Roger to go to a screening.

It was at the hearing screening that Roger learned about digital hearing aids, which use an advanced technology to enable users to hear frequencies, some which Roger hadn't heard in years.   

The problem was affording it.

Roger’s requests for funding were denied by many agencies and the private charities he approached required matching funds. Roger finally found his way to the AT Loan Program, which is operated through the Massachusetts Rehabilitation Commission (MRC), Easter Seals and Sovereign Bank. Although he was turned down initially for the loan, as Roger recalls, "Easter Seals didn't give up on me. Leo (program coordinator at Easter Seals) encouraged me to appeal and he even had ideas about the kind of additional information I should gather that would help." 

Today, Roger and his colleague run a fully operational sound studio. They've produced their first album and are beginning to generate revenue. Roger makes regular loan payments for his high-tech hearing aids.

The payments, he admits, are tight, as he relies on Social Security Disability Income (SSDI).  But for now, Roger stresses: "Winners never quit and quitters never win. The people at Easter Seals really treated me like a human being and I'm not going to let them down, not after the way they went to bat for me.”

MRC’s Assistive Technology Loan Program has proven to be another effective tool for people with disabilities and their families to purchase life-changing assistive technology that is often prohibitively expensive. This technology often makes a critical difference fostering independence, productivity, and a higher quality of life for individuals with disabilities.

To learn more about the program I urge you to visit www.massatloan.org.

 

Aphasia
Donna DeGuglielmo

“Aphasia affects about 1 million Americans or one in 250 people.  That is more than Parkinson’s disease, Cerebral Palsy or Muscular Dystrophy. More than 100,000 Americans acquire this disorder every year. However, most people have never heard of it.” (Information acquired from Aphasia.org)

Aphasia usually happens after someone acquires a brain injury. Aphasia affects a person’s ability to speak, read, write and understand spoken language. 

I would like to talk a little bit about my experience with aphasia.

There are two favorite sayings of mine, “You can say a lot without words, and keep it simple.”  I have been saying these things since I began having strokes, which is the cause of my aphasia. 

Have you ever seen the movie "The Artist,” or any silent films?   They prove that you do not need a lot of words to communicate. Someone’s actions, facial expressions, hand and body movements or silence communicates a lot.

There are many different technologies available to help an Aphasic person. But, I have never used them.  I have used some of the techniques that I mentioned above to communicate along with drawing and writing and the use of a digital recorder at times when I’m at the doctor’s office and so on. It can be frustrating for me to communicate with others, I try very hard and I am sure they do too. I have the most success communicating with people who are patient, understanding and take the time I need to communicate.

A few things you could do to help an aphasic person feel comfortable: keep the conversation simple, but on the adult level.  Turn background noise off (i.e. TV, radio, running water, people talking, etc.)  Do not interrupt the aphasic person or speak for them unless they say it is okay.  Examples of appropriate times to intervene would be when they need someone to add key information at the doctor’s office, looking for housing, PCA recruiting and managing, etc.

Aphasia is one of those disabilities you cannot see, a hidden disability.  I find it best to tell people I have aphasia.  Even though I look okay I struggle with my speech all the time and hurt inside doing so. Often when I ask for help people do not understand that I have a problem because of my hidden disability.

Going to speech therapy is very important to assist in the healing process. In addition, at home, I do various things; writing, reading, have someone read to me and I read to them in return, crossword puzzles, word search, singing (helps with the flow/rhythm of the words), online brain games, checkers, and card games (Solitaire).

I try to be positive and grateful always. I am thankful to God for all the gifts He has given me and I think aphasia is one of them. It has taught me great lessons. I appreciate words more now than before. I have done a lot in my life. I have never written an article before and this has been a challenge. For me to put together a sentence in written form is a feat. So be encouraged, it is onward and upward from here.

 

Mira Bartok National Book Critics Circle Award 
Girard Plante

Writers are always amazed when they’re chosen as the next newly published author. When they’re recognized for their craft they’re even more surprised. Well, the world of publishing has a new author. And she hails from New Salem, Mass.

Mira Bartok is this year’s winner of the prestigious National Book Critics Circle Award. So surprised to learn she won that while accepting the award she forgot to thank her sister for whom the memoir also includes.

Bartok arrived at writing her award-winning book after a car accident brought on a Traumatic Brain Injury. A tractor-trailer crashed into the car she was a passenger in on the New York State Thruway 10 years ago. “I didn’t see what was coming. I wasn’t knocked out for long, but I sustained a traumatic brain injury that involved microscopic bleeding in my brain,” she recalls.

But she began to write prolifically soon after her estranged mother passed away from stomach cancer in 2007. Both mother and daughter had communicated through letters mailed strictly to post office boxes. They had not seen each other for 17 years. That detached relationship quickly ended when Bartok discovered her mother was slipping away in Cleveland, Ohio, and went to stay with her until she passed away.

Realizing her memory recall would fade daily, Bartok lacked confidence writing the autobiography: “The Memory Palace: A Memoir.” In order to easily keep her thoughts together, Bartok dove into the “Method of Loci,” an established order of memorizing vast amounts of information created by Matteo Ricci, a Jesuit priest.   

Bartok employed Ricci’s lessons to plow through her account of family challenges that are praised as a “breathtaking literary memoir about the complex meaning of love, truth, and the capacity for forgiveness among family.”  Bartok also illustrated her 305-page book, which hit bookstores on Jan. 11, 2011, and was published by Simon and Schuster.

Other illustration projects with Boston area children’s author Jane Yolen are in the works as are “little radio essays” for New England Public Radio.

Battling through her traumatic brain injury and growing past life’s foibles has no doubt emboldened Bartok to set her literary sights squarely on the next writing gig. She won’t even hint at the “secret project” already taking shape.  

Editor’s Note:  Excerpts of this article were written by Anita Fritz for The Recorder and published in the March 24, 2012, edition of the Boston Globe.

 

An Iinterview with Richard Mangino
Girard Plante

Throughout our childhood my mother encouraged me and my six siblings to work through frustration while learning new tasks by saying: “Where there’s a will, there’s a way!”

Those words of wisdom aptly describe Richard Mangino’s struggle to adjust to losing his four limbs after a routine medical checkup discovered kidney stones in March 2002. Three hours after the diagnosis, Mangino developed sepsis. Doctors immediately induced a coma to treat Mangino’s life-threatening situation. 

Six weeks after he awoke from the coma necrosis set in and doctors had to amputate Mangino’s hands and legs. “I have little memory recall about exactly what occurred. I was placed on life support and nobody is entirely sure how the sepsis set in.” 

Today, Mangino wants people to know exactly how far he’s progressed. “I decided I’d go on and do whatever I could. I wanted to stop waiting for tomorrow to get better,” he explained. “Last week, I mowed the lawn.”
Doing such a chore became reality last October after receiving human hands and forearms from a man who died suddenly from a brain hemorrhage the day before his 44th birthday. Steven Lloyd never met Richard Mangino. Yet there’s an inescapable connectedness that will last for years.  

Lloyd’s wife Jodi received a phone call from the New England Organ Bank as life slipped away from her husband. Though she was initially stunned by such a request, Jodi realized after hours of contemplating the possibility, that somebody in need could benefit. “Why let these hands go to waste? It just made sense to me,” she said.

Shortly after his limbs were amputated, Mangino used prosthetic hands to perform simple tasks. Though the prosthetics were awkward, Mangino tweaked them to be more efficient so he could be more independent. “I relied on my family for many tasks.”  Still he lived an active life and never allowed an enormous loss of his limbs to consume him.

Mangino learned about a limb transplant procedure at Brigham and Women’s Hospital after his wife saw a TV commercial. “We called and made the appointment in August.”  Seventy people worldwide are known to have hand transplants. Mangino adds: “I make my bed, feed and dress myself.”

Jodi’s family supported her selfless decision. Her only desire was to get her husband’s wedding band he wore during the 23 years of their marriage. Doctor’s successfully retrieved the ring intact. Jodi never takes it off. “Steven helped everybody in his life, from people on the side of the road in a snow storm to people who needed help moving or starting their car,” she said. 

Better manual dexterity is a year away and may never be perfect, Mangino said. More minor surgeries are needed so he can use his fingers with precision. “I learned to play guitar. I drive a car. I live for today and plan for tomorrow. Every day gets better.” 

Jodi nervously visited Brigham to meet Mangino and his family days after the surgery.  “I felt honored to give him my husband’s hands,” she said.

Mangino is an artist and has been writing since childhood. “I always wanted to be a writer,” he boasts. Prior to his amputations, Mangino retired early from the ground crew at United Airlines. He resides in Revere with his wife and family.  He’ll have opportunities galore to do the mundane tasks he took for granted. “Just pushing my hair back and buttoning my shirt is a tremendous thing. You never realize how wonderful it is to do those simple things. I’m okay. It’s no longer about me or taking care of me. It’s about my family and living their lives.” 

To view Mangino’s writings and works of art on his website, go to: www.richardmanginoartist.com 

 

SUMMER SAFETY ALERT!

The Safe Dive Is No Dive!

You Can Prevent Spinal Cord Injury and Severe Head Trauma!

From the Think First Program www.thinkfirst.org 

 

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

Public Notice for ICC RFR

This is to inform the consumers of the Massachusetts Rehabilitation Commission (MRC) that the Request for Response (RFR) for the Individual Consumer Consultant (ICC) contract is ending June 30, 2012.

All current ICC’s must reapply to become ICCs for a start date of July 1, 2012.

To reach the Comm-Pass website please follow these steps:

  • Log onto www.Comm-pass.com
  • Click on Solicitations tab
  • Select on the Solicitation search tab (on the right hand side)
  • In the search space for key words enter MRC ICC 12
  • Select the one item found.
  • Click the eyeglass icon on the right.
  • That will bring you to the procurement. Please review all tabs and read all documents.
  • After reviewing, please go back to the Forms & Terms tab.
  • Please select all and download every form (eyeglass icon).
  • Then click the specifications tab.  Select all and download every form (eyeglass icon).
  • Please complete and return all required forms (Originals plus 1 copy) to:
    The Massachusetts Rehabilitation Commission
    600 Washington Street, 2nd floor
    Boston, MA 02111
    Attention: Kathy Maloof, Contracts Department

Personal Care Attendant (PCA)

In addition, the PCA contract is closing June 30, 2012. The current PCA’s have been sent renewal contracts to sign. If you cannot find your contract signature page please contact leslie.wish@mrc.state.ma.us

This is also a good opportunity to apply to become a PCA or an ICC.

 

Featured Artist   

Steven Bocchino is a resident of Cambridge, MA. He has a BA in philosophy from Harvard University and has studied at The School of the Museum of Fine Arts, Boston and the Pennsylvania Academy of Fine Art. He has been painting and drawing for as long as he can remember and is now working at Webster House and Gateway Arts in Brookline. His artwork was selected by DMH for their NAMI walk T-shirt Design in 2011.

 

This newsletter is an independent publication sponsored by the MRC State Rehabilitation Council. The opinions expressed in this newsletter do not necessarily reflect the policy and practices of the MRC. They are solely the opinions of consumers of MRC programs and services.

For further information contact Emeka Nwokeji, Director of the Consumer Involvement Program, at 617-204-3665.

To receive the newsletter electronically, send an e-mail to consumer.involvement@mrc.state.ma.us

 


This information is provided by the Massachusetts Rehabilitation Commission.