Youcef "Joe" Bellil, Chairperson
Elmer C. Bartels, Commissioner, MRC
From the Editor's Desk
By Elaine McHugh
We are very grateful for the leadership of Adriana Mallozzi as Editor of the Consumer's Voice. Adrianna is resolving some family matters and considering future endeavors. I will be temporarily taking over the duties of Editor and I look forward to working with you. Please feel free to contact me at consumer.involvement@mrc.state.ma.us. What follows is a brief biography.
Born in Boston Massachusetts, I grew up in the Mattapan area and was educated in the Boston Public School system. I re-started my education several years after high school graduation by taking classes part time at Boston College. Today I live in Walpole, Massachusetts.
I am married and have four children, including one who is a foster child for whom we are the guardians. My husband, Jeff Marden, is an electronic engineer and technologist at GE/Fanuc Embedded Systems, a manufacturing firm in Foxboro. Two of my four children have severe disabilities, including cerebral palsy and autism. It is the birth of these children that started my personal mission to ensure that every person has the right to the same quality of life that others enjoy.
I have been employed in the banking sector, social services and religious non-profit domain. All of these had environments reliant upon the ability to communicate effectively in writing and strong personal and advocacy skills. I have also provided my advocacy skills on a volunteer basis to the Town of Walpole as the Handicap Access Coordinator. In the past I have been a surrogate parent for children who are under-represented during their individual education plan (IEP) meetings in the Boston schools.
As stated in a previous paragraph, I have had a diverse work history. All of my past employment has required strong interpersonal skills and the ability to use the written word. Time management and meeting calendar deadlines are strong points of mine. Efficient and encouraging people skills will allow me to develop a close professional bond with contributing writers and artists who will want to be part of The Consumer's Voice.
I would like to share my vision for The Consumer's Voice. This is a wonderful opportunity to enhance this publication as a tool to increase public awareness of the programs of the Massachusetts Rehabilitation Commission (MRC). I would favor a focus on more local disability issues such as Independent Living (IL) , Vocational Rehabilitation (VR) and Social Security Administration benefits. In addition I would like to see The Consumer's Voice available in all public libraries and other state offices that serve the community. The most important part of this vision will be the inclusion of Individual Consumer Consultants (ICCs) and others from the disability community. Giving consumers a voice through art and the written word, The Consumer's Voice will be a bridge to the wider community.
Highlights of the 2006 Annual Consumer Conference
From the desk of Emeka Nwokeji
The Consumer Involvement Program is pleased to provide you with this synopsis of the 2006 Annual Consumer Conference. The Planning Committee met for the first time on March 13, 2006. The Committee wanted to emphasize the importance of breaking down barriers to employment for people with disabilities and voted that the theme of the conference should be "Pathways to Employment and Beyond". The Committee voted to hold twenty workshops over four ntsessions, the majority of which demonstrated themes related to the main focus of employment. In addition, the conference included its first informational job fair which hosted employers from several fields, as well as self-employed individuals who shared their stories of how they successfully maintain their careers.
The conference took place on November 30 and December 1, 2006 at the Marriott Hotel in Quincy, and ten workshop sessions were held on each day. Workshops covered employment-related topics as well as social networking and recreation, substance abuse and HIV, and hidden disabilities. Twenty-three exhibit tables were staffed by a variety of organizations, offering conference attendees information regarding many items of interest to the disability community. In addition to the valuable information offered in the workshops and by exhibitors, the conference provided a wonderful opportunity for networking during meals, social hours, and before and after workshops.
It is evident from the many positive comments on the General Conference Evaluation forms that the 2006 MRC Annual Consumer Conference: Pathways to Employment and Beyond was a great success.
Overall the participants found the Conference to be informative and helpful. One participant stated, "thank you for providing us with such a wonderful opportunity." Other comments included "thank you for having the conference," and "the conference made me feel like a very special individual." Participants were impressed with the workshops, speakers and attendance at the 2006 Conference with comments including, "better speakers and well spoken. More actual discussions from people with disabilities," "better workshops," "more information was given, "more people attending sessions." Though most participants had positive feedback some participants expressed dissatisfaction stating, "there wasn't as many people as last year."
Many participants commented on the great job the MRC staff did in putting on this Conference. One participant commented, "Ann Marie, Leslie, interpreters, Lisa, everyone deserves mega kudos. I really appreciated Emeka greeting folks in the lobby on Thursday. The welcoming way to start the Conference after driving a long distance." This Conference also provided consumers with great networking opportunities to meet and speak with other consumers. A participant commented, "met a lot of new people."
EOHHS Public Hearing at Westfield State College
On February 15, 2007 the Executive Office of Health and Human Services held public hearings at Westfield State College. Despite frigid temperatures and treacherous ice conditions, several hardy souls came to testify to the increased need for funding of programs for persons with disabilities.
From 10:45-12:30 individuals representing agencies, families of consumers and consumers testified on behalf of MRC and its programming.
In written testimony Joe Bellil, Chairperson of Statewide Rehabilitation Council (SRC) , asked for support to line item 4120-2000 which is an increase of 2.5 million dollars to support the good work of Public Vocational Rehabilitation Services. Mr. Bellil expressed his concern with the need of MRC to go from a three month waiting list to a six month wait due to the current financial situation. Mr. Bellil also emphasized the cost benefits of providing vocational rehabilitation services to individuals with disabilities.
Mike Zuchowski of Stavros gave written testimony about adult supported living programs that help keep people out of nursing homes. He requested more funding for case management services as there is a waiting list to help people leave nursing homes; this process is happening too slow because of the need for case management. Mike also discussed the cost effectiveness of adult supported living programs where by $10,000.00 is expended on a consumer during the first year in the community which is later reduced to an annual cost of $8,000.00 a year once the person is established in their residence. This is more cost effective than paying for nursing home care on an annual basis.
Martina Carroll of Stavros, in written testimony also asked for more financial support to get people out of nursing homes as well as to keep them from entering them. She requested pay raises for employees who provide the support services and discussed issues regarding income standards for Personal Care Attendant (PCA) users below age 65.
Gwen Gosselin of Families for Change expressed the need for additional support for school transition of individuals with disabilities after turning 22.
Anthony Defranco of Stavros discussed the importance of more interpreters and more training sites for interpreters. He also asked for funding of technical devices for deaf consumers. A further request for an increase of financial support for services to Deaf and hard of hearing individuals was also made.
Nancy Towne, a parent of a head injured son, asked for more funding for the MRC Statewide Head Injury Program (SHIP). Nancy shared with the audience how the program had benefited her son. As a parent, Nancy would like to see 100% of the speeding and impaired driver's ticket revenue given to SHIP, rather than the current 50% of revenue.
Eva Marie Brancewicz of Stavros spoke to the need to increase funding for Deaf Independent Living Programs, Deaf interpreter services, video phone services and non-english speaking Deaf individuals whose numbers are increasing.
Debra Koch, a consumer, requested increased funding for SHIP as well as for Vocational Rehabilitation services (VR). Debra expressed that consumers with neurological conditions could also be served by the SHIP Program. Debra also shared her idea of a Head Injury Commission. Further funding of education programs for the prevention of head injuries was also mentioned.
The Massachusetts Rehabilitation Commission would like to thank everyone who spoke on behalf of our consumers and their programs.
Public Hearing Executive Office of Health and Human Services (EOHHS) regarding the funding of New England INDEX and the Massachusetts Network of Information Providers for People with Disabilities (MNIP)
A brief summary of testimony in support of funding for INDEX and MNIP.
Joseph Wu, Director of Family Services at the Boston Chinatown Neighborhood Center, spoke directly in support of INDEX and the network of over one hundred non-profit agencies called MNIP. INDEX and the MNIP have done a great deal and have much to offer, but are at risk. The Department of Mental Retardation and the Massachusetts Rehabilitation Commission currently provide partial funding, but INDEX and MNIP serve a more diverse constituency than DMR and MRC and the current funding level is inadequate to cover the total costs of the service. It is important for EOHHS to develop a funding plan that fully supports the project and to find a place for it in the budget. Given that this is an existing program with close ties to the state, it will not be necessary to invest large amounts of money to create something new. It is an opportunity to take care of an investment that is already working for so many in our state.
Mary Margaret Moore, Executive Director of the Independent Living Center of the North Shore and Cape Ann, Inc., felt that it was important to underscore as a priority one of the most basic needs of people with disabilities: clear, accurate and up-to-date information. Ms. Moore went on to say that people with disabilities want to live independent and productive lives and are perfectly able to make or contribute to making decisions about their own lives when good sources of information are available.
New England INDEX maintains extensive up-to-date information on a wide range of services and disabilities that is available free of charge at its Web site (disabilityinfo.org).
Although INDEX and MNIP are well established there is a crucial need for a funding mechanism that insures their continuation. It is important for EOHHS to develop a plan to fully fund the work of INDEX and MNIP.
Sandy Slavet, Director of Disabilities Network of Jewish Family & Children's Service, receives over 30 telephone calls a month from people who are looking for programs and don't know where to turn. It can be an overwhelming task to find and coordinate a wide range of services in the community without a single point of entry. For those of us who do this professionally and for those who do it personally it is difficult to imagine doing it at all without INDEX and the MNIP. Although, DMR and MRC continue to fund INDEX, a line item in the EOHSS budget for INDEX is needed.
Sidney Rosenthal, the Chair of the Disability Commission in Sharon Massachusetts, believes that as a person with a disability he has faced many issues that have required him to make important decisions that affected his ability to live independently in the community. In order to make these decisions it was crucial that he had the basic information to understand the alternatives available. Often this information was not easy to locate. For this reason INDEX and MNIP are valuable tools.
Mr. Rosenthal further stated that many do not have access to the internet and when they call these agencies, a trained person uses the INDEX information to answer their questions. It is discouraging to have a service in place that is continually under funded and there is no line item in the EOHHS budget.
February 20, 2007 Meeting of the Special Committee of the
Massachusetts State Rehabilitation Council (SRC)
Robert Sneirson
Boston--February 20, 2007-At a meeting today of the Special Committee of the Massachusetts Rehabilitation Commission (MRC) State Rehabilitation Council, MRC Commissioner, Elmer C. Bartels warned that the agency faces increasingly dire fiscal straits if the amounts of federal and state monies devoted to vocational rehabilitation is not increased.
In Fiscal Year 2001, the Commission had approximately $8.1 million in state monies devoted to vocational rehabilitation. Today, in Fiscal Year 2007, the Commission received approximately $7.8 million. Commissioner Bartels said "there has only been very small increases in federal dollars during this period of time, so small, in fact, that these funds have not kept up with inflation. In real terms, the MRC's purchasing power has decreased while the cost of doing business has sharply increased, and therefore, we have shed 40 vocational rehabilitation counselors during the past few years. More recently, we have extended the waiting list for paid vocational rehabilitation services from three to six months." In order to preserve vocational rehabilitation in Massachusetts, advocates must go to the Massachusetts Legislature and the United States Congress to advocate for additional monies.
To help advocates out, the State Rehabilitation Council has proposed that the Massachusetts Rehabilitation Commission be given an additional $2.5 million in state dollars to bring the total state appropriation for vocational rehabilitation to $10.3 million. The best way to advocate for additional monies according to Joe Bellil, Chairperson of State Rehabilitation Council, is to explain to your legislators that a dollar invested to provide vocational rehabilitation services for a person with a disability, yields approximately $11-$14 in tax money to the Commonwealth of Massachusetts.
Another way to advocate for increased state expenditures for vocational rehabilitation is to tell your own story. Telling your own story has two distinct advantages. It cuts away the clutter that exists in the mind of the legislator and it humanizes the issue for most legislators. Legislators are inundated with reports and data from multiple sources with no clear way of prioritizing what information is most important to them. Knowing people with disabilities is a way for legislators to take policy from the vague to the concrete. Having concrete stories in the mind of legislators is what we want when they go in to vote on state appropriations.
On March 27, 2007, the State Rehabilitation Advisory Council held its quarterly meeting at the State House in Boston. At this meeting, MRC consumers, disability advocacy organizations and MRC friends gathered to advocate for additional monies for the Massachusetts Rehabilitation Commission and to encourage the members of the Massachusetts Legislature to do more for the Massachusetts Rehabilitation Commission.
Home Care Assistance Program (HCAP)
Betty Maher
The Massachusetts Rehabilitation Commission's Home Care Assistance Program (HCAP) provides a necessary service to many people with disabilities, enabling them to remain living independently in their communities. Through a network of home care agencies and independent Home Care Assistants, HCAP provides direct assistance with grocery shopping, meal preparation, laundry and light housekeeping to those whose disability prevents them from performing these tasks themselves.
HCAP Case Managers not only determine eligibility for and assist individuals in receiving the homemaking service, but they also provide ongoing assistance and follow up with consumers whose needs may change over time. Each year, the program assists hundreds of consumers in accessing services through other agencies including the PCA program, housing supports, assistive technology, vocational rehabilitation, counseling, and elder services home care.
Funded through state appropriation, the program has been challenged over the years to balance the rising costs of service delivery, particularly providing a decent wage to direct care workers, with the increasing demand for the service. This year, the program has had to maintain a waiting list, currently over 200 people. These individuals have an expected wait of 6 months or more before they will receive these essential services.
In July of 2006, there were 1,481 people receiving services. Through attrition and maintenance of a wait list, that is down to 1,440 now, with a need for a decrease to 1,370 to maintain a balanced budget. The program receives an average of 80-90 referrals per month, but that has been increasing steadily to over 100 referrals each month in the past few months.
Persons with Disabilities and Poverty Information Bulletin 197
Source: Steve Gold
People with disabilities between 18-64, who have never been able to work or who can no longer work, receive either Supplemental Security Income (SSI) and/or Social Security Disability Insurance (SSDI). Based on the following data, our national government and elected officials seem to have forgotten to address disability and poverty. Maybe the same can be said for disability advocates in many states.
Nationally, there are about 10 million people between 18 and 64 who are disabled and receive either SSDI and/or SSI. It's important to break down these numbers to understand the extent of poverty these people face. First, let's look at the nearly 6 million people with disabilities in this age category who only receive SSDI. These 6 million receive an average of about $950 a month in SSDI benefits only 24% above the federal poverty level. The federal poverty level for a single person is $9,800 a year or $816 a month. As with all "averages," there are many folks below the $950 a month. Second, there are 3 million people with disabilities between 18 and 64 who receive SSI only. The monthly SSI federal payment averaged $469 a month 43% BELOW the federal poverty level. If a person were lucky enough to live in one of the 30 states that provide both the SSI federal payment and a state optional and mandatory supplementation to the federal SSI payment, then their total monthly benefits are about $603 a month and still 26% BELOW the poverty level. Third, there are about 1 million people who receive a combination of SSDI and SSI. These people receive a combination of SSDI and SSI because their SSDI benefits fell well below their state's SSI payment. They are then eligible for a SSI payment up to the SSI benefit level. (Obviously, these are the poor SSDI recipients.)
These 1 million people receive an average SSI payment of $189 a month to supplement their SSDI. This means these 1 million were, before they became disabled low-income workers and/or were sporadically employed and did not earn enough from wages to receive an SSDI benefit that exceeded the minimum SSI benefits. Since their SSI benefits with their SSDI benefits equal only the minimum SSI level, their total monthly combined benefits total about $603 a month.
When viewing people with disabilities and poverty, we should look at those 4 million SSI recipients with disabilities between 18-64 who receive SSI only or a combination of SSI and SSDI and all of whose incomes fall at least 26% BELOW the federal poverty level.
If these figures were not discouraging enough, then there are the resource limitations and exclusions that must be satisfied to qualify for SSI; countable income cannot exceed $2,000 for an individual and $3,000 for a couple. This has not changed since the SSI law was enacted more than 30 years ago!
Many of the 6 million people with disabilities receiving SSDI only, who would qualify for a SSI payment because their monthly SSDI benefits are low, do not apply for SSI because of the resource limitations. They are discouraged from applying for the measly SSI monthly income solely because they have saved more than $2000 and are afraid to part with it in order to qualify for SSI.
If you want to know whether or not your state pays an optional state supplementation to SSI, the number of people with disabilities who receive it, and the amount, if any, you can find it at http://www.socialsecurity.gov/policy/docs/progdesc/ssi_st_asst/2006/index.html. Click on your state and look at Tables 1 and 2.
Disability Advocates:
1. Why should any person with a disability have to survive on less than the poverty level? Isn't it time for a state campaign to raise SSI levels to the poverty level?
2. If your state does not provide State Supplementation to federal SSI payments, how can any elected official expect a person with disability to survive on $469 or even $603 a month? Why doesn't your state provide it? Why haven't the disability advocates taken up this issue?
3. What about national legislation to increase the minimum federal SSI and to significantly increase or eliminate altogether the resource limitations? What are our national inside the beltway advocates doing to address this issue? With the recent talk of a national minimum wage, what about a national SSI payment at least at the poverty level?
Inclusive Fitness Coalition Will Open Doors for People with Disabilities
James Rimmer, National Center on Physical Activity and Disabilities
"This article is reproduced from the National Center on Physical Activity and Disability at www.ncpad.org. It may be freely distributed in its entirety as long as it includes this notice but cannot be edited, modified, or otherwise altered without the express written permission of NCPAD. Contact NCPAD at 1-800-900-8086 for additional details."
We're about to witness a great change in the fitness industry. The time has finally come for club owners, manufacturers of exercise and recreational equipment, and architects and developers who design and build health clubs, parks, and playgrounds to understand the importance of making fitness facilities and programs more inclusive, so that people with disabilities can have an enjoyable and engaging experience like any other club member.
As I've mentioned on numerous occasions, people with disabilities experience many different and complex physical, social, and attitudinal barriers that prevent their participation in work, leisure, and social activities. Going to a health club can be a very unpleasant experience for many people with physical, cognitive, and sensory disabilities. Front-line staff don't have much experience interacting with people who use wheelchairs and rarely know what is and isn't accessible in their facility. People with cognitive disabilities often have a difficult time finding programs and services that are affordable, or that provide enough assistance using certain types of equipment or following instructions in a group exercise class. Most fitness instructors are taught to work with people who fall into a very narrow range of physical and cognitive function, and when someone falls out of this range, the instructor is left to his or her own devices to make it right for the paying customer.
The 54 million people in this nation with disabilities, and an additional 50 million or so with chronic health conditions who could benefit greatly from the resources and expertise found in health clubs and fitness centers, seldom if ever use these facilities. Sadly, the industry continues to focus their resources on the "young and restless" crowd who supposedly have greater financial resources and are more conscientious about their weight and looks (as if no one with a disability or health condition is interested in the same outcome!).
The old cigarette commercial, "We've come a long way, baby," is perhaps a fitting place to begin a launch that occurred on January 24 ,2007 at the National Press Club in Washington, DC, co-sponsored by the American College of Sports Medicine and the National Center on Physical Activity and Disability. On this historic day, two major organizations -- one fitness and one disability -- began a long-term commitment to promoting "inclusive fitness" among a broader community of citizens that includes people with disabilities and people with various activity limitations and chronic health conditions that typically do not consider themselves disabled yet have similar needs as the disability community. It's time to reach across American homes where people with Alzheimer's, intellectual/developmental disabilities, autism, multiple sclerosis, cerebral palsy, spinal cord injury, mental illness, stroke, head injury, severe depression, obesity, diabetes, and others are waiting to embrace the concept of health and fitness and promote their own health. We can no longer be considered an industry that withholds treatment to people of all ages and disabilities
There's an old story that seems to fit well with the way fitness centers currently recruit new members:
A woman approaches a young man who has lost his keys. She asks if he needs help finding them and he replies, "yes." As they search for the keys, she asks: "Where do you think you lost them?" Surprisingly, he points across the street from where they are standing. With a baffled look she asks, "If you lost them across the street, why are we looking over here?" He responds, "Because the light is much better on this side of the street."
The new Inclusive Fitness Coalition will help guide the fitness industry in recruiting new members not under the light, but rather, in places where 54 million people with disabilities and millions of others with chronic health conditions are waiting to be heard and eager to become more active in health promotion and fitness.
Department of Transportation Proposes New ADA Rules for Cruise Ships
The Supreme Court case of Spector v. Norwegian Cruise Line in 2005 ruled that the ADA applies to foreign cruise vessels that enter U.S. waters despite their registration in other countries. Because of this decision the Department of Transportation issued a formal proposal last week addressing policies and conditions relating to transportation of passengers with disabilities. The aim of the proposal is to completely eliminate any discrimination in the treatment of people with disabilities. It addresses how cruise lines have treated individuals with disabilities and how that treatment must change once ADA rules are implemented. The proposal does not address architectural barriers or the operations of the vessels (which will be handled by the U.S. Access Board separately).
If the proposal is adopted:
- All assistive technology such as wheelchairs and scooters as well as service animals would be allowed without question.
- People with disabilities traveling on cruise lines will not have to identify themselves and register as a special care guest prior to traveling.
- The reservation process and all accompanying information will become fully accessible to all blind and deaf travelers.
- Fees associated with accommodations and assistance cannot cost more than what a non-disabled individual would be charged.
- Cruise lines will not be allowed to require that a passenger with a disability travel with a companion or assistant if that individual did not feel it necessary; if a cruise line still feels one is necessary, it would have to provide one or allow free passage for an attendant chosen by the traveling individual with the disability.
- Travelers with disabilities would not have to sign a waiver of liability as a condition of traveling on cruise lines.
The Department of Transportation's proposal is currently under review and open to comments from the public, cruise lines, and other stakeholders until April 23, 2007, To read the entire filing and learn more about how to contribute comments, visit: http://dmses.dot.gov/docimages/pdflOO/443543_web.pdf.
Source: AAPD
Discrimination Watch
Buses Flout Rules
Posted by: Paul Spooner, MWCIL
Date Mailed: Wednesday, February 14th 2007 11:32 AM
"No dog, no dog," shouted the driver and another worker when District resident Joe Orozco and his guide dog tried to board a Today's Bus from Washington to New York. Orozco protested that the company is required by law to accommodate service animals, but the workers continued to block his entry. Once he called police, the workers said he could ride if the dog was put in the bottom of the bus with the luggage. They relented after police came and insisted that Orozco and his guide dog be allowed to board the bus.
When Orozco tried to board the return bus the next day, a Today's Bus employee in New York yanked his ticket away and tried to return his money, he says.
The bus pulled away. After Orozco called police, workers said he could take the next bus but ordered him to sit in the back. He complied, but he is filing a complaint with the Justice Department, Which enforces the Americans with Disabilities Act (ADA). Today's Bus did not respond to four telephone messages left for the manager and owner.
The ADA guarantees interstate service to disabled passengers; that includes providing access, with advance notice, to people in wheelchairs. But many of the companies that pick up passengers curbside-the so-called "Chinatown buses"-simply ignore the law. In 2004, regulators checked 14 companies that operate between Washington and New York, and cited 11 of them for violating the ADA. The Justice Department launched an investigation in October 2004. "We continue to work on it," spokeswoman Cynthia Magnuson said last week.
Gathering evidence seems quick and easy to do one person, who recently called Today's Bus to ask about wheelchair access reports. The man who answered refused to give his name, but his answer was clear: "No Wheelchair."
To register a complaint, call the Justice Department, 800-514-0301.
Source: The Washington Post.
Disability Rights Bus Travels Across Nation
Posted by Paul Spooner, MWCIL
Date Mailed: Wednesday, February 21, 2007
HOME FREE: "The Road to Freedom" bus will travel to 80 cities in its year-long tour to raise awareness of ADA. Advocates for Americans with disabilities plan to visit 80 cities this year. "The Road to Freedom" bus tour, which has already traveled an estimated 3,500 miles to 16 cities, is promoting awareness of the Americans with Disabilities Act (ADA).
Jim Ward, ADA Watch and National Coalition of Disability Rights President, is leading the tour with his wife, Debbie, their two children, and photographer Tom Olin. The tour will end in Washington, D.C. on November 15, 2007.
"Everyone in the disability movement, young to old, likes to know the history," said Olin, a photographic historian whose pictures will be persevered at the Smithsonian Institution. They like to figure out where we came from and where we are going. Most People have a family member that is disabled and can actually relate to all this."
Olin's photographs are shown on the exterior of the "The Road to Freedom" bus, on display panels for public viewing.
His pictures seek to capture the essence and struggles of the disabilities movement. They include a young man using a cane in a protest march with a sign, "Separate is not Equal" and a woman in an electric wheelchair at a rally with a poster stating, "Break the Chains of Discrimination."
Marcie Goldstein, who uses a motorized wheelchair, saw "The Road to Freedom" display in New Orleans. "It makes me think we are still advocating for the same things," said Goldstein. "We've made progress, but not enough." For Goldstein, even with an advanced degree, she still has difficulties with career advancement. She thinks it is due to attitudes of employers about hiring persons with disabilities.
This attitude may be what Olin observed while taking pictures at events side by side with local press. "The difference (in the same picture taken by two photographers) is so obvious," said Olin, mine come from knowing a person is powerful." Olin thinks the other photographers were only seeing the disability or the wheelchair, and not the person. "I try to put power back into the person."
The bus tour was inspired by Justin and Yoshiko Dart's historical trips across America fighting for the passage of ADA. Justin's wife talks about her late husband's vision for equality for persons with disabilities. Justin, who used a wheelchair, and his wife traveled to all 50 states by car three separate times in the 1980s and to gather support to get it passed.
"We collected 5,000 discrimination diaries from all over the country," said Yoshiko. "We took them in boxes to Congress and Justin pulled out the most striking discrimination stories to share. " Stories were shared such as young Lisa Carl's, who was denied entry into her local movie theatre because of her wheelchair.
The civil rights movement for persons with disabilities looks much like the 1960s civil rights movement for minorities. People with disabilities have held sit-ins at federal buildings, blocked inaccessible buses from traveling, marched in the streets to protest injustice, and sought redress in the courts and protection through legislation.
"Drawing on people power, persons with disabilities then took the lead in every state by lobbying their legislators for the passage of ADA," said Yoshiko Dart. Every congressional building had a person in a wheelchair or walking with a cane or service dog to talk to their representatives in the summer of 1990. The Darts were amazed that the Act was passed in just two years after their last road trip, versus the 10 they thought it would take.
Yoshiko has hope for the future due to the young with disabilities. She finds the youth of today as confident, viewing inaccessible obstacles as inconveniences, and wanting to move on and fit into mainstream America, in different occupational fields. "Tremendous progress has been made since ADA," said Yoshiko. "But, there is a lot of work still."
The ADA aims to help people with disabilities to return to living within their community, not within institutions. It also prohibits employment discrimination based on disability, and requires accessible public transportation and accommodations, to allow for participation in daily activities. This translates to such things as curb cuts and ramps, so wheelchair users can get into classrooms for an education, stores to buy groceries and clothes, and to seek housing and be employed. According to the 2000 Census, 45 million Americans are estimated to be disabled due to functional limitations that interfere activities of daily living.
Source: Epoch Times
IDEA Supreme Court Update
On February 26, 2007 The National Council on Disability (NCD) Chairperson John R. Vaughn released a statement regarding the U.S. Supreme Court oral argument, which was heard on February 27, 2007 on whether parents may, without a lawyer (pro se), file a lawsuit to enforce their child's rights under the Individuals with Disabilities Education Act (IDEA).
The case of Winkleman v. Parma City School District (No. 05-983) addresses a split among circuit courts, one circuit deciding that there are no limitations on the parents' ability to prosecute pro se an IDEA case in federal court, several circuits ruling that under IDEA parents can only represent pro se Their own interests and not those of their child, and the Sixth Circuit saying in Winkleman that parents cannot represent themselves or their kids in court under IDEA.
As an independent federal agency that is statutorily charged with the responsibility of promoting disability laws and programs, NCD is concerned about maintaining the ability of parents to obtain the rights and benefits guaranteed to their children under IDEA.
Chairperson Vaughn concluded by urging that the resolution of the Winkleman case give full effect to the educational guarantees of IDEA by supporting the rights of parents to pursue the interests of their children regardless of whether they have a lawyer to assist them.
The entire statement with links to related NCD publications is available at (http://www.mcd.gov/newsroom/news/2007/r07 -531.htm).
Updates and Reports
Metro West Consumer Council
251 West Central Street, Suite 25
Natick, MA 01760
Telephone (508) 651-7531, Fax (508) 655-8799
Minutes February 28. 2007
Members present: Kevin Goodwin, Patricia Laughlin and Nan Kurtz
Members excused: Nancy Sullivan and Iris Robichaud
Staff: Janice M. Ngau
Updates and Announcements
Nancy Sullivan was unable to attend today's meeting due to illness. Council members wish her a speedy return to good health.
Information on Multiple Chemical Sensitivity was shared with Council members.
Kevin Goodwin informed the Council that the first planning meeting for the 2007 Annual Conference will be held on April 5, 2007 at the Brockton Library.
The Governor's 2008 budget was released today. Council members were given information on the MRC line items. Budget hearings are being scheduled by House Ways and Means on March 15,2007 at the State House and consumers can give testimony.
The annual SRC Legislative Meeting will be held at the State House on March 27, 2007 and consumers from the Council plan to attend.
Outreach Project
Kevin Goodwin has contacted Sudbury, Framingham, Marlboro, Needham and Natick. He is setting up dates to meet with them. He is also working on outreach to students with disabilities at Framingham State College and Mass. Bay Community College (Framingham and Wellesley campuses).
Advocacy
Patsy Laughlin has spoken with someone from Rep. Markey's office to invite a staff , person to attend a Council meeting to educate them on priorities and needs for" people with disabilities in the Metro West area.
Next Meeting
April 25, 2007 at 1:00 p.m. at the Natick MRC office.
SRC Artists With Disabilities Task Force
Required Calendar Information
Artwork: Up to 3 pieces may be submitted by each artist. Digital images should be submitted if possible (either through email or saved to a CD and mailed). If this is not possible please contact us to make alternate arrangements.
Artwork Title: 25 character limit including spaces and punctuation.
Artist Statement: 180 character limit including spaces and punctuation.
Example: I aim to get rid of the "Y" in "Rocky" and permit an Artist In Progress to have a "Rock" (my rock being origami and charcoals featuring it) to secure oneself, opening consumer eyes to the fine arts world.
Biography: 240 characters including spaces and punctuation.
Example: Lisa Corfman, born in Boston, MA holds a Bachelor's degree in Fine Arts and is certified as a Nurse Assistant. Working part-time as a recreational therapist, Lisa holds several jobs including her company Rocky Arts.
Self-Portrait: Please include if possible a black and white photo portrait. If you do not want to have your photograph displayed in the calendar you may take some other kind of artistic black and white photograph such as a close up of your hands.
Contact Information: You can include address, email, phone number, fax number, and/or website. You may also opt to leave your personal information off.
Calendar 2008 Entry Participation Application
(Applications must be received by June 1st, 2007)
General Information (NOTE: We need this information to contact you in the case that your artwork is chosen. We will not publish any of your personal information without your written consent)
Name:
Phone 1
Phone 2:
Address:
City:(must be from MA)
Zip:
Email:
Website:
Individual Consumer Consultant (ICC)
The Massachusetts Rehabilitation Commission's Consumer Involvement Program (ICC) 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 ICC program that have skills and experiences valuable to the needs of MRC. The program is open to both MRC Consumers and their immediate family members.
The foundation of the commitment to consumer involvement at the Massachusetts Rehabilitation Commission (MRC) is the belief that people with disabilities have life experiences and expertise that are valuable resources in the development of agency policy and the solution of problems relative to the service objectives of MRC.
This program is for MRC clients to gain work experience and as such they are encouraged to apply to gain meaningful employment skills working on projects as an ICC. This is not considered full time work; it is a step on the road to employment.
These projects are usually very short term 1-3 days in length and there is no guarantee that there will be consistent work. Every effort is made to accommodate all ICCs with regard to their limitations and abilities.
The (CI) program utilizing ICCs who perform a variety of projects and services at MRC.
The program products include but not limited to:
- Annual publication of the MRC Consumer Satisfaction Survey.
- SRC Annual Report to the Governor and the Secretary of EOHHS.
- The MRC Consumer Handbook which is developed by the SRC Consumer Handbook Task Force.
- The MRC Consumer Involvement Annual Calendar put together by the SRC Artists with Disabilities Task Force.
- The SRC/MRC Consumer Voice a quarterly published newsletter.
- The spring legislative education day held at the state house.
- The Annual Consumer Conference.
- The SRC State Plan attachment to the VR State Plan for Vocational Rehabilitation.
Consumer Involvement Telephone Numbers:
(617) 204-3665 (Voice/TDD) or 1-800-223-2559
FAX #: (617) 727-1354
Other Opportunities
The ALS Association is seeking co-leaders for evening support groups for ALS patients and their family members. The monthly groups meet in the evening in Peabody and Methuen. The Methuen group meets on the last Wednesday of every month from 6-8:30 p.m. The Peabody group meets on the 4th Thursday of every month from 7-8:30 p.m. This is a paid position including mileage and toll reimbursement. If interested in either group, contact: Judy Teplow at 888-287-3257 or judy.teplow@als-ma.org.
The Fair Housing Center of Greater Boston is looking for people to become trained volunteers that can uncover discrimination in the rental and home ownership markets. This is an on-call volunteer position with a paid stipend that requires a commitment of a few hours a month. No formal experience is necessary just a commitment to promoting equal housing. If interested please contact Tory Rockett at 617-399-0491 ext. 106 or e-mail at trockett@bostonfairhousing.org.
Upcoming Events
Northeast Assistive Technology Conference and Expo 2007
Date: Thursday, May 3, 2007
Place: Radisson Hotel and Suites Chelmsford
For more information contact Alison Forsythe 978-975-8587
Artists with Disabilities Task Force Open Studios
Date: Saturday, May 5, 2007
Place: Cambridge Focus 600 Memorial Dr. Cambridge, MA.
Time: 1p.m.-5p.m.
For more information contact Lisa Weber at 617-204-3638
Italian Renaissance Sculpture:
From Donatello to Giambologna-a tour at 11 a.m. presented in ASL by Deaf tour guide Leon Jerfita. Explore samples for the Museum's recently rediscovered Renaissance sacred and secular treasures in bronze, tera-cotta, marble, silver and even papier-mâché. This tour is free but pre-registration is required by Monday, April 30, 2007 by e-mail Rkahn@mfa.org Please note that this tour is for people who are fluent in American Sign Language; there will be no voiced English interpretation.
Date: Saturday, May 5, 2007
Place Museum of Fine Arts, Boston MA.
Time: 11 a.m.
For more information e-mail Rkahn@mfa.org
Cambridge Commission for Persons with Disabilities (CCPD) monthly meeting
Date: Thursday, May 10, 2007
Place: 51 Inman St. 2nd floor Conference Rm.
Time: 5:30p.m.-7p.m.
For more information contact Acessletter at 617-492-0235 or e-mailcthompson@cambridgema.gov
Brookline Office 50th Anniversary and 10th Annual Employer Recognition Awards
Date: Tuesday, May 8, 2007
Place: Copley Marriott, Boston, MA
For more information contact Karen Beth Mael at 617-739-9080
Boston Voice Users
A Group for people who use speech recognition or dictation software.
Date: Tuesday, May 8, 2007
For more information contact Accessletter at 617-492-0235 or e-mail cthompson@cambridgema.gov
A Gala of Possibilities
Date: Friday, May 11, 2007
Place: The Seaport Hotel, Boston, MA.
Time: 6p.m.-10p.m.
For more information contact Roxanne Hoke-Chandler at 617-541-2875
State Rehabilitation Council Meeting
Date: Tuesday, May 29, 2007
Place: Location TBD/Northeast (Region)
Time: TBD
For more information contact Emeka Nwokeji at 617-204-3665
The Twenty Third Annual DMR Human Rights Conference
Date: Tuesday, June 12, 2007
Place: DCU Center, 50 Foster St., Worcester, MA.
For more information contact: Martin Rachels at 413-284-5006 or 1-800-328-3123 ext. 5006, TTY 413-739-4701
Genesis Croquet Day
Date: Saturday, July 14, 2007
Place: Assumption College
For more information visit www.genesisclub.org
State Rehabilitation Council Meeting
Date: Tuesday July 31, 2007
Place: Location TBD/West (Region)
Time: TBA
For more information contact: Emeka Nwokeji at 617-204-3665
Featured artist Andrea Jacobs of Manchester asserts, "There are things we hang onto that give us a sense of self and purpose. I hang onto art, to photography, to the moments before dawn. No matter what there is water and reflection, a recurring theme in my photographs".
You may contact Andrea Jacobs, North Shore Artist at (617) 204-3638.
Are you an artist? Become our next Featured Artist; whether it be painting, drawing or writing poetry, submit your works to us via e-mail to
consumer.involvement@mrc.state.ma.us or call Lisa Weber at
617-204-3638 for more information.
George E. Dukeman:Longtime advocate for the disabled
George E. Dukeman 84. of Plymouth MA died recently. He was a longtime advocate for the disabled.
A former employee of Scully Signal in Wilmington, Mr. Dukeman organized the handicapped Persons Annual Picnic in Plymouth.
When the picnic tradition started in 1979, disabled people were often housebound, he told The Patriot Ledger in 1993. As the event grew in popularity, it migrated from a backyard on Elm Street to St. Bonaventure Church to Plymouth Airport.
Mr. Dukeman told the Ledger in the early 1980's that many people - he called them "the temporarily will-bodied"- did not always appreciate what it meant to be disabled. "My job is to spread the word," he said. "People will help, but you've got to get them going."
Mr. Dukeman's campaign to have a ramp installed at Plymouth
Town Hall was successful, though town meeting initially rejected his proposal in 1982. He argued that a ramp would help not only him, but also many disabled veterans who went to town hall for services.
He also worked with the Easter Seal Society to improve handicapped access to public buildings and restaurants.
Through the years Mr. Dukeman earned a high school diploma from home, drove a specially equipped car and learned to fly.
"The only thing I can't do is climb a step," he told the Ledger in 1982.
The Statewide Employment Services Department Wants You!
Are you a past participant of Project IMPACT, Community Based Employment Services (CBES) or the Extended Employment Program (EEP)?
We would like to invite you to participate in the Statewide Employment Services Consumer Advisory Council.
Your feedback regarding the programs provided by SES will help shape our current services and assure that we continue to meet the needs of our consumers.
The time commitment is minimal. We meet quarterly from 5:00pm - 7:00pm at locations around Massachusetts. The meeting rotates around depending upon where the council members live. Transportation is provided for those who request it.
If you would like additional information regarding your participation on the Statewide Employment Services Consumer Advisory Council, please call Joe Reale at (617) 204-3854.
The Cosumer's Voice
Elaine McHugh Editor
Contributing Writers
Gerard Plante
Robert Sneirson
MRC Staff Editors
John Chappell, Jr., Deputy Commissioner
Janna Zwerner, Chief of Staff
Emeka Nwokeji, Director, Consumer Involvement
Sheila Wojdakowski, HR/Customer Relations
Leslie Wish, ICC Program Coordinator
Lisa Weber, CI Program Coordinator
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.