Dedicated to empower consumers as a source for information and to provide a platform to make their needs known.

From the Editor's Desk
By Adriana Mallozzi

Happy New Year! MRC went out with a bang celebrating twenty-five years of Consumer Involvement at the Annual Consumer Conference. Thanks to the planning committee and consumers like you, the event was a complete success! Lisa Weber, Conference Coordinator, joined the MRC staff in October 2005. Despite the fact that she entered late in the game with only two months to tie everything together, she pulled it off seamlessly.

The Conference took place on December 1 and 2 2005 at the Quincy Marriott Hotel with approximately 300 people in attendance. The mood was a little lighter and the atmosphere more festive - after all, we were celebrating a milestone in the history of the MRC.

The first day consisted of story telling sessions, a puppet show and time for networking and socializing. It was topped off with live entertainment and dinner. Our guest speaker was former Boston University hockey player and motivational speaker Travis Roy, who sustained an injury during his first collegiate game in 1995, paralyzing him from the neck down. Roy spoke of the many challenges he faced as a result and the importance of never giving up. "Some challenges we choose, while other challenges choose us. The question is whether or not we conquer the challenges life presents us or do we surrender to them."

Day two was jam packed with informative workshops ranging in topics from MRC 101 to Recreation & Outdoor Explorations, followed by a luncheon during which the Moro Fleming Awards were presented. The 2005 recipients were Suzanne Doswell of Pittsfield and Kevin Goodwin of Wayland.


The Consumer's Voice is celebrating its tenth anniversary in March, 2006. We need your help in making the tenth anniversary issue the best ever. We are looking for submissions of articles, original poetry and all kinds of literary accomplishments to represent the diverse population of our readership.

Submissions should be sent either via email to consumer.involvment@mrc.state.ma.us or via snail mail to:

The Consumer's Voice
 Fort Point Place, Suite 600
27 Wormwood Street
Boston, MA 02210

With all that said and done, I would like to take a minute to introduce you to the people behind the scenes of The Consumer's Voice; the elusive Editorial Board. My past articles have always focused on yours truly, so I thought it was about time I shined the spotlight on the people that help make it happen. I would not be able to produce such a great publication without their help and support.

  • Eileen Brewster is originally from New York City. For the past twenty-seven years she has resided in the state of Massachusetts, where she has become an advocate for MRC consumers to obtain services. She advises individuals on how to self advocate and has worked as a community advocate in the South End, Roxbury and Dorchester neighborhoods. Appointed by the Governor of Massachusetts as a member of the Statewide Independent Living Council (SILC), in addition to working with the Neighborhood Access Group (NAG), she represents individuals with disabilities. Eileen has also worked for several non-profit organizations and coordinated many programs throughout the greater Boston area.

  • Lisa Chiango is originally from Boston, MA. She received a BA in Computer Science from Gallaudet University in 1993. Throughout the years, she has participated with various committees for various projects in the Deaf and Deaf-Blind communities. She is currently working on her master's thesis in Visual and Media Arts from Emerson College, in addition to her duties as Co-Director at the Deaf Blind Contact Center. Lisa currently serves on the Mass Relay Advisory Board and the MCDHH SAC Council.

  • Warren Magee is originally from Boston, MA. After graduating high school in 1988, he attended various trade schools which include Computer Learning Center, ORC/Madison Park High, Greater Lowell Regional Tech., and Urban League of MA where he learned computer skills and business administration. He currently chairs the Handbook Committee, Turning 22 and the Consumer's Voice Taskforce. Warren is also involved in many other committees within MRC and actively advocates for individuals with disabilities.

  • Girard A. Plante is originally from Utica, NY. He received a BA in Journalism from Utica College of Syracuse University in 1988. In 1993, he moved to Massachusetts. For the past 19 years, he has written for a daily newspaper, weekly newspaper, and various newsletters for non-profits and a for-profit national polling firm. Currently, he writes a column for the Boston Post-Gazette, as well as articles for Bookbuilders of Boston's quarterly newsletter Pages, which circulates to the publishing and printing industries in the Boston area and across New England. He also has twenty-five years experience as an advocate for disability rights.

  • Robert Sneirson is originally from Brookline, MA. He received a BA in Political Science from Tufts University in 1989 and an MA in Political Science from Boston University in 1993. From 1991 to 1996, he served on the Massachusetts Developmental Disabilities Council in various positions including a two-year stint as Secretary of the Council. From 1999-2004, he was Chairperson of the Disability Policy Consortium, a statewide cross-disability policy development organization. In 2000, he was selected as a member of the inaugural class of Project Leadership, an Administration on Developmental Disabilities funded project of national significance to teach national policymaking skills to advocates and parents of children with developmental disabilities. Currently, he is Consultant to the ADA Transition and Compliance teams in Brookline and is the Chairperson of the Brookline Massachusetts Commission on Disabilities. Also, he serves on the Combined Jewish Philanthropies Committee on services to persons with disabilities.

$250,000 Toxics Use Reduction Institute (TURI) Veto Overridden
Submitted by www.arcmass.org

The Association for Retarded Children (ARC) decided to expend resources, pushing for an override of this relatively small budget, due to the connection between common environmental toxins and birth defects and learning disabilities (not to mention a host of other diseases in the non-disabled population). By overriding the Governor's veto, the Legislature took a small but important step forward in acknowledging the importance of prevention - that unregulated low-level toxins merit further study to supplement the growing evidence that compounds found in commonly used household products pose a risk to consumers.

As if to underscore the validity of the recently-passed Massachusetts legislation, a story on the front page of The Wall Street Journal entitled Levels of Risk - Common Industrial Chemicals In Tiny Doses Raise Health Issue, stated that the FDA has found that some substances may have effects at the very lowest exposures that are absent at higher levels.

"For years, scientists have struggled to explain rising rates of some cancers and childhood brain disorders. Something about modern living has driven a steady rise of certain maladies, from breast and prostate cancer to autism and learning disabilities. One suspect now is drawing intense scrutiny: the prevalence in the environment of certain industrial chemicals at extremely low levels. A growing body of animal research suggests to some scientists that even minute traces of some chemicals, always assumed to be biologically insignificant, can affect such processes as gene activation and the brain development of newborns."

$1 Million Early Intervention Veto Overridden
Submitted by www.arcmass.org

This funding represents one of the most cost-effective investments for the Commonwealth - meaning in cold hard economic terms, the dollars help the state avoid more costly educational intervention and adult services down the road. Of course, the program also helps thousands of Massachusetts families cope with stressful situations and remain intact.

Although legislators heard from many asking for funds, we encourage you to take a moment now that the dust has settled to say thanks for their positive response to our community. Send a quick email using the ARC Action Center at: http://capwiz.com/thearc/mail/oneclick_compose/?alertid=7877281

Guide to State Government Brain Injury Policies, Funding and Services (2nd Edition, 2005)

This newly revised Guide delineates the extent to which states have developed and funded coordinated services and supports for individuals with TBI and their families. It is intended to assist state agency administrators in identifying trends in service development and funding mechanisms, as well as to inform federal policy makers about the status of brain injury service delivery nationwide. Other individuals and organizations with an interest in TBI-related state government policies and programs will find this to be a valuable resource as well.

A primary objective of this publication is to capture an accurate and current "state-of-the-states" in brain injury service delivery. This is accomplished by presenting a systematic arrangement of responses provided by the country's brain injury program administrators to a 93-question survey.

Preserving the same basic structure of the 2003 Guide, this edition includes more comprehensive descriptions of each state's service delivery system, in addition to several new narratives. Its major sections include National Data, Federal/State Funding, State Funding, Services and Supports, Prevention Programs and Policies, and the State Profiles. The Summation provides a synopsis of current activities and future trends. Appendices supply a copy of the Survey Form used to gather data, and delineate milestones in TBI policy and legislation.

A bound copy of the complete publication can be ordered from the NASHIA store online at www.nashia.org.

Innovative Employment Supports for People with Developmental Disabilities

The Institute for Community Inclusion's (ICI) research uncovered several state mental retardation/developmental disabilities agencies that have done an excellent job of promoting community employment for people with developmental disabilities. Short profiles explain what worked in six states and offer lessons for other agencies to consider.

Contact ICI at:
Email: ici@umb.edu
Phone: 617-287-4300 (Voice)
617-287-4350 (TTY)
Web: www.communityinclusion.org

The Next Great Hiring Frontier

Summary by Girard Plante from www.careerjournal.com/columnists/managersjournal/20050914-managersjournal.html

Ever since the Americans with Disabilities Act became a law in 1990, a myriad of articles about employing people with disabilities bore a paternalistic, woe-is-the-disabled-person slant. Anybody advocating on securing the rightful place of people with disabilities in our society had known for years the bleak statistics of their unemployment.

Take the recent article entitled "The Next Great Hiring Frontier" by David Morris, CEO of Habitat International, Inc., an indoor-outdoor rug manufacturer. Morris eloquently espouses the benefits of hiring people with disabilities. He also challenges employers to take people with disabilities at face value just as you would any non-disabled employee. Morris extols using tax credits and grants to hire this long-ignored segment of the unemployed. Indeed, he writes deliberately of the raw talent and solid work ethic that prospective employees with disabilities possess.

The article that appeared in the September 15, 2005, online issue of The Wall Street Journal is one of those refreshing reads that provides straightforward statistics and candid messages for businesses and corporations: they best begin opening their eyes and their doors to a huge pool of prospective employees.

There is no skirting the issue of America's abysmal record of long oppressing people with disabilities in every area of society. In addition, one of the most glaring areas is employment, says Morris. Yet he goes one-step further in reminding the public to get over their unfounded "fear" of dealing with people with disabilities.

Morris' candor and superb use of statistics is nothing new when writing about the employment of people with disabilities. However, reminding corporate America of their responsibility in employing people with disabilities goes beyond any such topics I have read in a long time.

High Stakes for the Housing Voucher Program in the 2006 Appropriations Bill

Summary: A new report finds that the Senate Appropriations Committee's HUD funding bill would do a better job than the comparable House bill of repairing recent damage to the housing voucher program. The report shows how each of the bills would affect state and local housing agencies across the nation. There are differences between the two bills, however, both would change the way voucher funds are divided among housing agencies and both would increase voucher funding for 2006.

More Info: www.hcbs.org/moreInfo.php/nb/doc/1365

Maine CHOICES CEO (Comprehensive Employment Opportunities) Website

Summary: The Maine CHOICES CEO (Comprehensive Employment Opportunities) project seeks to develop and implement a comprehensive statewide plan to support more people with disabilities who work or would like to work. The project will also improve information about, and access to, some key work incentives for Maine people with disabilities. The website features materials & resources, links to other work incentives resources and a description of the planning process.

More Info: www.hcbs.org/moreInfo.php/nb/doc/1374

Medicaid Commission Report

Summary: On September 1, 2005, the Bush administration's Medicaid Commission released its recommendations for reducing the growth in Medicaid spending by $11 billion over the next five years. The report provides a history and overview of the program, explains the purpose of the commission, and offers six recommendations for savings.

More Info: www.hcbs.org/moreInfo.php/nb/doc/1369

Training Quality Home Health Aides

Summary: This paper, an effective practice description originally published by the Paraprofessional Healthcare Institute in 2003, is now available free of charge in Spanish. The 32-page document discusses adult learner-centered training methods, the importance of teaching communication and problem solving in addition to clinical skills, orientation, peer mentoring, and other forms of on-the-job support.

More Info: www.hcbs.org/moreInfo.php/nb/doc/1376

Updated Regulations for Power Wheelchair and Power Operated Vehicle Claims

Summary: Center for Medicare and Medicaid Services (CMS) announced that a certificate of medical necessity is no longer required for power wheelchair and power operated vehicle claims. This is another step to streamline and ensure appropriate access for people with Medicare to power operated vehicles. In an interim final rule with opportunity to comment that went on display at the Federal Register, CMS clarified the requirements for prescribing, supplying and receiving payment for these vehicles. Review the interim final rule and fact sheet.

More Info: www.hcbs.org/moreInfo.php/nb/doc/1366

Youth with Disabilities Who Are Aging Out of Foster Care

Summary: Many Real Choice System Change grantees are struggling with the issues that effect youth with disabilities that are aging out of foster care. View documents promising practices and demonstrated strategies about the subject, as well as two reports about transition planning for foster youth with disabilities. A resource list of organizations and websites is also included.

More Info: www.hcbs.org/moreInfo.php/nb/doc/1372

The Upside of ADHD: Enthusiasm, Empathy and High Energy among Traits the Disorder Carries
Summary by Girard Plante

articles.health.msn.com/id/100109339/site/100000000/

Could it be possible that people living with ADHD are now viewed as gifted individuals whose rash behavior is advantageous and not the debilitating barrier to partaking in life's activities that has long been the primary myth of the medical disorder?

It is not only possible but also probable, says Marilyn Lewis, who wrote a compelling article for MSN's Health and Fitness section, "The Upside of ADHD: Enthusiasm, Empathy and High Energy among Traits the Disorder Carries."

Approximately two to four percent of American adults and three to seven percent of children who have the medical disorder cope well as they increasingly learn that their years-long struggle to become whole and understood by a largely unenlightened society is more symptomatic of their unique creativity and intelligence.

Some people wonder for years why they acted differently, became irritable or easily distracted. Too many people around them wrongly viewed their eccentric behavior on bad parenting or as an unruly child, not as some disease. Yet these are just two myths about ADHD. Once properly diagnosed, they finally realize that their "disorder" has been a rich part of their personalities rather than the downside of a disease that dictates how they act or react.

Medication is accepted and used by some with ADHD while others reject medication as a way to balance the effects from the medical disorder. Some use ADHD's traits of endless energy to see a project through to its conclusion and ability to move onto the next one without hesitation as keys to success.

Medication, says Ken Melotee, of Green Bay, Wis., inhibits his ability to perform his work projects successfully. "I instantly start working on solutions, seeing different ways to do things."

Thom Hartmann, an expert on ADHD, is one of the enlightened few who discovered the benefits of the medical disorder. Numerous books such as Delivered From Distraction: Getting the Most Out of Life With Attention Deficit Disorder, by Dr. Edward Hallowell and Dr. John Ratey, and The Gift of ADHD: How To Transform Your Child's Problems Into Strengths by Lara Honos-Webb add credence to Hartmann's groundbreaking evidence that ADHD has more benefits than liabilities.

"Differences that may make life difficult or be viewed by some as pathologies, have to have some sort of upside, outside of pure disease processes. Otherwise they wouldn't survive in the gene pool," Hartmann says.

Blind Driver Sets New Speed Record
Summary by Adriana Mallozzi

www.abc.net.au/news/newsitems/200509/s1456626.htm

Hein Wagner, 33, became the world's fastest blind driver after driving across a remote airstrip near South Africa's border with Botswana. Blind since birth, Wagner drove at 269 kilometers per hour with the aide of a sighted navigator. After crossing the airfield, he told reporters he wanted to do it again but was considering piloting an aircraft for his next record attempt.

The aim of the drive was to increase public awareness and raise money for a national charity for the blind.

Telecommunications for the Deaf, Inc. (TDI) Announces Fund for Katrina Survivors Who are Deaf and Hard of Hearing
Submitted by cepintdi.org/090805.htm

Silver Spring, MD [September 8, 2005] - TDI has announced a new fund for deaf and hard of hearing survivors of Hurricane Katrina who may need financial assistance to restore communication access. Donations to this fund will go toward replacing telecommunication technologies lost or damage because of the worst natural disaster ever to hit the United States.

All donations will go to an ad hoc restricted fund, namely TDI Hurricane Katrina Relief Fund. A committee will be appointed by the TDI Board of Directors to provide oversight of the expenditures from this fund, and to decide on appropriate administrative measures to support the telecommunication needs of displaced Gulf Coast citizens who are deaf or hard of hearing.

While other relief funds may cover basic needs of survivors with hearing loss, such as food and shelter, the TDI Hurricane Katrina Relief Fund will fulfill a range of technology-based telecommunication needs of such individuals. These needs may include replacement of technologies such as amplified phones, TTYs, captioned telephones, NOAA weather radios, portable televisions with captioning, web cams, videophones, incoming telephone call alerting devices and basic pager equipment needs.

"Losing one's home and property is a devastating experience for anyone. But to someone who depends on special technologies to facilitate telecommunication, the loss of those technologies that are their lifeline to news and other critical information can rapidly escalate any emergency into a serious life-threatening crisis," said Dr. Roy Miller, TDI President. "Having the essential tools to receive and send information will go a long way to alleviate the stress of recovering from the disaster, and allow them to move on with their lives."

If you wish to help displaced Gulf Coast residents who are deaf and hard of hearing, please contribute today.

If paying by check or money order, make it payable to TDI Hurricane Katrina Relief Fund. Donations may be mailed to:

TDI Hurricane Katrina Relief Fund
8630 Fenton Street, Suite 604
Silver Spring, MD 20910

Contributions made by credit/debit card may be faxed (with payment information) to TDI at 301-589-3797.

Statewide Independent Living Council's 2005 Conference
By Eileen Brewster

I participated in a very exciting three-day conference, "The Future is Now", that took place on September 19-21, 2005. It was sponsored by the Statewide Independent Living Council (SILC) and funded by the Massachusetts Rehabilitation Commission. The purpose of the conference was to get a glimpse of how independent living centers, SILC and the State should work together over the next three to five years.

The conference involved a combination of speakers and workshops. One particularly interesting workshop explored what you can do when Mass Health refuses to pay for durable medical equipment; I learned about maintaining services pending an appeal.

Mary Margaret Moore, Chairman of SILC's State Planning Committee, led a workshop on the Aging and Disability Resource Consortium (ADRC) of Northeastern Massachusetts. This consortium serves persons age 60 and over, people with all disabilities age 14 and over, and family members and caregivers. ADRC's aim is to assist individuals and their families in maintaining independent and productive lives in the community.

A fun part of the conference was the Independent Living Center (ILC) Follies, in which all the ILC's and impromptu groups were invited to perform in a talent show. It included songs, dances, skits and other activities with the ILC's in Massachusetts. The show was run like the Gong Show and awarded the First Place Golden ILC Follies Trophy to Boston Center for Independent Living, which did a skit on "naughty" phones and relay services. Second prize went to the MILCB, who sang a song to the tune of "Hit the Road Jack", and third prize went to AdLib for a skit that was a take off of the Wizard of Oz. Everyone was costumed, even two dogs!

Governor William Weld established SILC by the executive order in 1994 to ensure that individuals with disabilities would be involved in planning and reviewing the ILC programs and services provided under the Rehabilitation Act Amendment of 1992.

If you are interested in a Governor's appointment to SILC, you must complete an application form, attach a resume and submit both to SILC Development/Nomination Committee. Applications may be obtained by going to www.masilc.org or contacting the SILC office 508-620-7452 (Voice/TTY), or toll free 866-662-7452 (Voice/TTY).

ANNOUNCEMENTS

Earn Money at Home While Helping Those in Need

Cambridge-Somerville Eldercare has a number of clients who are elderly and/or disabled that can't live alone. They have their own rooms, are financially independent, and only require minimal supervision (making sure their basic needs are met).

You will receive $11,000 per year for living with a client. This would be especially beneficial for struggling artists, as it would give you the freedom to do the work you love without the financial burden.

For more information, contact Ann @ 617-350-7713 (Voice) or 617-350-6836 (TTY), or via e-mail at ann@vsamass.org

LD/ADD Support Group

MRC is sponsoring a cost-free support group for persons with learning disabilities and attention deficit disorder. The group
meets every Wednesday from 6:00 pm-7:30 pm at the Parish House Library of Christ Church Episcopal in Cambridge. For more information contact Angelica Sawyer @ 617-661-3117.

Irving K. Zola Center for Persons with Disabilities at Brigham House

The Irving K. Zola Center for Persons with Disabilities at Brigham House is a drop-in community center named for Irving Kenneth Zola, an internationally known sociologist and advocate who specialized in disability studies and medical sociology.

This Center provides a welcoming environment for persons with disabilities. The facilities include:

  • Five computers with internet access
  • Large screen TV, DVD and CD players
  • Pool table
  • Sewing machines
  • A meeting room

The center is in the Brigham Community House, a non-profit corporation, located at 20 Hartford Street, Newton Highlands, MA 02461. It will be open every Saturday from 12:00-3:00 pm. It is also available for rental to various groups throughout the week. The entrance is wheelchair accessible and conveniently located on the Riverside D Newton Highlands stop.

For more information contact Donna Suskawicz @ 617-277-5131.

Listen To Our Stories Is Online!

Listen To Our Stories is an anthology of words, pictures, and songs by children and young adults with disabilities. It includes poetry, essays, interviews, songs, journal writing, letters, and pictures. Contributors range in age from 5 through 21 and have widely varied backgrounds and disabilities.

The website has an extensive list of resource links that will help you to further explore the issues that the stories in the collection raise. Check out www.listentoourstories.com!

CALENDAR

Upcoming Meetings

SRC Legislative Meeting
Date: Wednesday, March 15, 2006
Place: State House, Boston, MA

Time and location for all SRC meetings will be announced at least three weeks before scheduled dates. For more info call 617-204-3665.

The Consumer's Voice
To request this document in an alternative format or for further information contact Emeka Nwokeji, Director of Consumer Involvement at 617-204-3665.

Visit www.mass.gov/mrc for an online version of this document.

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

The Consumer's Voice

A publication of the MRC StateRehabilitation Council
William McCarriston, Jr., Chairperson
Elmer C. Bartels, Commissioner, MRC

A quarterly publication of the Massachusetts Rehabilitation Commission Consumer Involvement Program.
For further information contact Emeka Nwokeji, Director of Consumer Involvement Programs at 617-204-3851

Editors: Adriana Mallozzi (ICC), Leslie Wish, David Mortimer (ICC), Eileen Brewster (ICC), Lisa Chiango, Warren Magee, Girard Plante, Robert Sneirson and Janna Zwerner.

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.

This information is provided by the Massachusetts Rehabilitation Commission.