Volume IX Issue 3, Spring 2001
From the Executive Director Mary Margaret Moore
The ILNSCA is looking forward to an exciting spring. We have received a donation of funds from the North Shore Self Help Group (NSSHG), the founders of the Center. These funds will be used to rate the accessibility of restaurants on the North Shore and Cape Ann. Art Daignault, Access Specialist, is designing a training for some of you who want to learn how to rate specific restaurants during the summer and fall. Those who are trained will be sent out to rate the restaurant, write up those ratings and while at the restaurant enjoy a meal with a guest of your choice, cost covered under this grant. We will publish the ratings after all are compiled. Our target is to offer this training in May. If you are interested in being a part of this effort, contact Art. We thank the NSSHG for their ongoing support to us.
Each spring the Massachusetts legislature develops the budget for the upcoming fiscal year, July 1 to June 30. The Governor released his budget in January, which level funded all Independent Living Centers (ILC's). The 11 ILC's in Massachusetts are asking state Senators and Representatives to increase the amount of funding for all of the ILC's and for creation of a separate line item for that funding so that it will only go to independent living centers. Currently ILCNSCA has many folks waiting for our services, both intake and appointments. This is true of all ILC's in Massachusetts. All ILC's could provide more services to those that are now unserved or underserved with increased funds.
Please call or write to you state Representative and Senator and ask for creation of new line item, 4120-4020, and an increase of funds for all ILC's. If you are unsure who your representative or Senator is, you can call Secretary of State Galvin's Citizen's Information service line at 1-800-392-6090 or 617-878-3889 TTY.
We are working with Division of Medical Assistance, Department of Mental Health and the Massachusetts Rehabilitation Commission to address difficulties in maintaining health coverage as folks return to work and earn too much to maintain SSI or SSDI. We have found that the transition from Mass Health to Commonhealth coverage is not seamless and PCA services at times are jeopardized. We will let you know our results.
New Staff Members Jamie Flavin and Diane McIntyre
Hello, my name is Jamie Flavin, and I have recently started working at ILCNSCA as the new Director of Services. I am thrilled to have joined the team here to help in spreading the voice of Independent Living. Although my professional experience has been in the financial fields of investments and banking, I have had personal and service related experience with disability related issues, which gives me the knowledge and passion to be of value to the center. I am eager to share my own experiences as a disabled person with the consumers here at ILCNSCA with the hope that it may provide knowledge to my peers with similar situations to my own. I have run programs through volunteering at the Massachusetts Hospital School, Handi Kids Summer Camp, Youth Service America, and Nestle's Very Best In Youth Program. Through these programs I have been able to work in varied disability-related areas such as youth with disabilities, wheelchair sports, and disabled people in volunteerism. Thank you for the opportunity to introduce myself and I look forward to working with all of you in the future.
Hello to all, my name is Diane McIntyre, the new afternoon Staff Assistant. I'm pleased to work with a great, incredible and resourceful team. I'm a student at North Shore Community College in the Medical Administrative Assistant Associates Degree program. My working background includes being an Office Support at Mass General Hospital, a SPED Para Professional in the Boston Public Schools, and a Certified Home Health Aid working with the elderly and people with disabilities in their homes. I look forward to meeting you in person, as well as talking to you over the telephone regarding the services and referrals offered at the ILCNSCA.
2001 ILCNSCA Legislative Breakfast
The 14th annual ILCNSCA Legislative Breakfast was held on Friday, March 30, 2001 at the Peabody Marriott. Despite the stormy March weather, nearly 100 people attended this annual event. Invited guests included consumers and their families, service providers, municipal leaders, and State and Federal legislators.
The Legislative Breakfast began with welcoming remarks from ILCNSCA Board President Sheila Casey, who made a poignant speech about the need to increase the amount of affordable, accessible and available housing. ILCNSCA Executive Director Mary Margaret Moore laid out the ILCNSCA advocacy agenda, pinpointing the need to increase funding for independent living centers (ILC's) and to establish a single line item for ILC's in the 2002 State budget, which is now being developed by our state legislators. Representative Anthony Verga, the Legislative Host, spoke of how the North Shore and Cape Ann legislators make disability issues a priority and he recognized the following legislators in attendance: Congressman John Tierney; State Senators Frederick Berry and Edward Clancy Jr.; State Representatives Mark Falzone and Thomas McGee; and William Haberland, legislative aide to Senator Tarr.
The 2001 ILCNSCA Legislative Breakfast awards were presented. Andrew Lapointe of Salem was the 2001 Advocate of the Year. Sam Goody music/video store in Peabody was the 2001 Distinguished Employer of the Year. The Leavitt Award for lifetime achievement was given to Senator Frederick Berry, who spoke in fond remembrance of ILCNSCA founder Bernice Leavitt.
The Honorable Congressman John Tierney was our keynote speaker, discussing the importance of people working together in Society to make it better for all. He stressed the importance of budgetary responsibility and discipline, discussed his viewpoint concerning the proposed tax cut, and touched upon some of the important disability legislation that he is supporting. Mayor William Scanlon of Beverly and Mayor Stanley Usovicz of Salem discussed their cities' commitments to increase physical and program accessibility, to enable persons with disabilities to participate in and enjoy the communities in which we live. Commissioner Elmer Bartels of Massachusetts Rehabilitation Commission discussed independent living history in Massachusetts and the important role of ILC's in promoting independent living.
The morning concluded with a brief question and answer period facilitated by Mary Margaret Moore, followed by her challenge to all to vote. She asked that those who are not registered to vote to please do so, and that those who are registered to vote remember their responsibility in our democracy to have their voice heard by their vote.
Access Art by Art Daignault
In January 2001 Governor Paul Cellucci signed legislation to "Clarify and Strengthen Enforcement of the Handicapped Placard and Parking Laws." This legislation took effect immediately. I have highlighted some key features of this important access enforcement legislation.
Section 1 of this legislation states that it is a violation to park a vehicle in a "cross-hatch" area. This is the painted striped area adjacent to a handicapped parking space that allows a person to enter and exit a vehicle with a wheelchair.
Section 2 states that the fine range for parking in a handicapped parking space without a handicapped plate or placard increases from between $25.00 - $100.00 to $100.00 - $300.00.
Section 3 of the regulation makes many changes to Section 2 of Chapter 90 that establishes the handicapped placard. The new changes are as follows: 1) the law removes the previously confusing references to the placard as a type of plate; 2) if a person uses the handicapped placard without authorization, then the person who uses the placard will be penalized, not the person who was issued the placard; 3) it clarifies that a placard may be utilized for parking "in association with" the transportation of the authorized person of the placard. This change addresses confusion related to the appropriate use of a placard when picking up or dropping off the authorized user; 4) Upon application and for good cause, the new law allows the issuance of both a plate and a placard to a person with a disability; 5) it allows a worker with a disability to use their placard when driving a commercial vehicle, but preserves the time limitations for the utilization of commercial spaces; 6) the new law increases the fines for unauthorized use of a handicapped placard from $100.00 to $500.00 for the first offense, and $1000.00 for subsequent offenses; and finally, it specifies that the fines and penalties in this section are in addition to those specified in Section 37E of Chapter 266 for the fraudulent use of another's identity.
Beverly Shelter Update
On January 24, 2001, Cedric Ashley, Peer Advocate of the ILCNSCA, and I attended the "Open House," sponsored by the Salvation Army, at the new Beverly Shelter on River Street in Beverly. The Shelter currently has 14 beds for male adults. Through the planning and building stages, Beverly Mayor William Scanlon and the Salvation Army, operator of the Beverly Shelter, have been committed to making this facility accessible to all individuals. There is an accessible ramp and shower. The bathroom renovations had not been completed as of the Open House date, yet they are making it accessible. At the present time, the first floor is the only floor being utilized, but the Salvation Army would like to use the basement and second floor. Those floors are not accessible. The Salvation Army has expressed an interest in working cooperatively with the Center to insure accessibility to everyone. The ILCNSCA appreciates the commitment and attention to making this shelter accessible.
ILCNSCA is interested in hearing from you regarding any access issue you are encountering. We are committed to working with individuals, businesses and municipalities in the 19 cities/towns in our service area to increase accessibility for everyone. If you or someone you know has an accessibility issue, Access Art, alias Art Daignault, would like to hear from you.
For further information about Access Art articles above, contact Art Daignault by phone at (978) 741-0077 V/TTY or by e-mail at Adaignault@ilcnsca.org.
A Book Review by Kitty Babakian
The Little Locksmith by Katharine Butler Hathaway
"The Little Locksmith" is the memoir of a disabled woman's journey to independence. She was born to a wealthy, Salem, Massachusetts family in 1890. (Her maternal Grandfather was the founder of Almy's Department Store.) Struck by tuberculosis of the spine when she was five, a renowned doctor strapped her to a board on the bed, hoping to straighten her back. It remained her basic mode of life for ten years.
Yet the world from her bed was entertaining. She had loving siblings and parents and enjoyed writing and drawing. Writing was to become her passion. The title of this memoir, written in the early 1940's, refers to a man with a hunched back who repaired locks in her childhood home. She would lay pinned down, watching him at his work. But when she rose from her bed at fifteen, deserting the board of straps and pulleys , her back was a lesser version of "the Little Locksmith," and she was "no larger than a ten year old child."
Ms. Butler went on to study writing at Radcliffe. She made many friends, but doubted she would ever have a life partner. Once back home, she struggled with a overprotective mother.
"Because I was so delicate and because I was deformed she believed that I would never leave her behind, even in my imagination, as normal children have to leave their mothersÉ"
She left her mother and dwelled for a time in rooming houses in Boston, spending time in Maine, too, as a summer boarder. At thirty-four, she surprised herself by buying a large house on the coast of Maine with a family inheritance. Her mother dispatched to Castine, Maine a truckload of beautiful, old furniture. An independent woman, she lovingly restores her house.
When she is lonely several years later, she rents a tiny apartment in New York City. She travels to Paris. Despite her fairs of spinsterhood, she marries a Mr. Hathaway. During the Depression, they are forced to sell her house in Maine, but its purchase was a landmark for Katharine Butler as an autonomous adult. Katharine Butler Hathaway writes frankly of her fear, anxiety, and depression both as a woman and as a person with a disability. It's a beautifully written book that entertains and inspires. ILCNSCA has this book available in our library if you would like to borrow it. Call (978) 741-0077 V/TTY to inquire about the availability of The Little Locksmith.
Multiple Sclerosis Funding
A new program has been funded by the state and is administered through Department of Public Health to assist persons with multiple sclerosis live independently. It reimburses on a one time basis for out of pocket expenses for which there is no other payment source, regardless of income/assets. There are specific limits for different types of intervention - i.e. from a limit of $300 for an air conditioner, to a limit of $1500 for inpatient/home-respite, to a limit of $2000 for non-covered medications. The statewide contact for referrals at this time is Laurel Pelis at 1-800-445-1255, ext 136. An intake can be approved within days, but it can take 4-6 weeks for the person to actually receive reimbursement.
Ms. Pelis stated that the MS Society of Massachusetts can also reimburse folks up to a max of $1000 per year for similar reasons and the Society operates similarly. The contact for the Society program is Judith Rosenbaum, Program Manager, Waltham office, 1-800-493-9255 ext. 127. Also, the MS Society is opening a new western Massachusetts branch office in Worcester on February 7th.
Vocational Readiness/ Independent Living (VR/IL) News
February VR/IL Workshop Review
The ILCNSCA held a Vocational Readiness-Independent Living Workshop on February 1, 2001 entitled "How the MBTA is Making the "T" More Accessible to People With Disabilities/Travel Training". Ron Mariani, from the Office for Transportation Access and Matt Whalen from the Senior and Access Pass office of the MBTA came to the Center to share information and answer questions on the topic. They brought a variety of maps and schedules of the MBTA transportation system related to the North Shore area to share with participants. They also brought information on the Travel Training Program.
If there are any individuals who are currently eligible for The Ride and are interested in information on the Travel Training Program you can call Jeanne at the Center (978) 741-0077 V/TTY. The workshop was such a success, ILCNSCA is going to hold another transportation workshop this fall.
ILCNSCA Winter Social Events
By Rebecca Hutchinson and Jeanne Lyons
A Magical Afternoon! On Saturday, January 27, 2001, ILCNSCA sponsored an event at the Larcom Theatre in Beverly. Attendees were entertained by the two-hour production of "An Anthology of Stage Magic" performed by le Grand David Spectacular Magic Company. The performance included comedy and illusion which mesmerized the audience.
Ahoy mates! On Saturday, February 24, 2001, ILCNSCA held a luncheon at the Gloucester House Restaurant in Gloucester. Twenty-five people came from the 19 Cities and Towns on the North Shore and Cape Ann to the luncheon, that featured plenty of delicious food and lively conversation in the room. Mary Margaret Moore, Executive Director at ILCNSCA, extended a warm welcome to everyone and a brief talk about the mission of ILCNSCA and the luncheon. Jeanne Lyons, Peer Advocate coordinated this event. More events in Cape Ann will be scheduled in the future. Gloucester House was accessible and very welcoming to our group. Both events were partially supported by a grant from the Clipper Ship Foundation to the ILCNSCA.
State Representative Michael Cahill of Beverly visited ILCNSCA on December 21, 2000 to learn about services provided to the disability community. Pictured on left (left to right) Art Daignault, ILCNSCA Access Specialist; Meredith Haviland, Researcher for the State Human Services Committee; Representative Cahill; Mary Margaret Moore, ILCNSCA Executive Director.
National Theatre Workshop
The National Theatre Workshop of the Handicapped is now accepting applications for their summer scholarship program in the fine and performing arts. The Fine Arts workshop runs from May 17, to June 3. The first Intro to Theater session runs June 9 to June 19; The second Intro to Theater session starts June 22 to July 3. A Chorale session runs from August 9 to August 24. All successful applicants receive free room and board, and travel expenses to the beautiful coast Maine in Belfast. For more information and an application, please contact Dean Kevin Curtin (info listed below), or visit our website at http://www.ntwh.org.
National Theatre Workshop of the Handicapped
PO Box 1138, 96 Church Street
Belfast, ME 04915
(207) 338-6894 or (207) 338-6075 (fax)
Speech to Speech
If you have a speech disability and live in MA, you can now use a new, free telephone service 24 hours a day. This service, called Speech to Speech (STS), provides communication assistants (CA's) for people with difficulty being understood by the public on the telephone.
People with speech disabilities can dial toll free to reach a patient, trained CA who is familiar with many speech patterns and has excellent language recognition skills. This CA makes telephone calls for them and repeats their words exactly in a 3-way calling environment. STS is the only way for many people to telephone others not accustomed to their speech. Many STS users have ALS, Parkinson's disease, CP, MS, or MD. STS also helps some speech synthesizer users.
The Massachusetts Relay Service currently provides speech to speech relay services here in Massachusetts. The number to use is 1-800-439-0183 (ask for a speech to speech operator).
MBTA Customer Bill of Rights
In February 2001 the Massachusetts Bay Transportation Authority (MBTA) unveiled a Customer Bill of Rights that covers The Ride participants as well as Trains, Buses and Subways. There are five elements in this Customer Bill of Rights with the first right being "Your right to on-time service". The MBTA will give you a complimentary fare in the event that your service is delayed over 30 minutes. There is a notification card that needs to be requested by you, then filled out by you and sent to the MBTA in the mail. You can request these feedback cards when ordering tickets, at AACT (Access Advisory Committee to the MBTA) meetings, from drivers (in limited quantity) and at various locations throughout the MBTA system. If you need more information about this call Jeanne at (978) 741-0077 V/TTY.
ILCNSCA Legislative News
ILCNSCA Access Specialist Art Daignault inspired a new bill, H-3350, that was developed and sponsored by Representative Michael Cahill of Beverly which pertains to a waiver of life insurance premiums in the event of a disability. As some bank policies allow the policy holder to waive payment of an insurance premium if the holder becomes totally disabled, this bill redefines and softens the definition of "total disability" for life insurance providers. Without this legislation some policy holders, who become disabled and are working part-time, are not considered totally disabled by insurance providers and still must pay the entire expensive premium that they can no longer afford. For more details, contact Art at ILCNSCA at (978) 741-0077 V/TTYor by e-mail at Adaignault@ilcnsca.org.
Job Openings at ILCNSCA
Full time Peer Advocate at North Shore and Cape Ann branch office, $8.50 - $10.00/ hr.
Computer literacy required, and a dedication to the Independent Living philosophy. Bilingual English/Spanish preferred. Benefits offered.
Part time Fiscal Data Specialist at North Shore Main office, $11.00-$12.00/hr.
Must be accurate and experienced with accounts receivable, accounts payable and use of MS EXCEL and Quickbooks 2000. No benefits.
Please send cover letter and resume to: ILCNSCA, Attn: MMM, 27 Congress Street, Suite 107, Salem, MA 01970 . We are committed to hiring minorities, women, and persons with disabilities. EOE/AA
Independent Living Center of the North Shore and Cape Ann
ILCNSCA follows the federal standards as an independent living center (ILC). We are unique in the arena of human service agencies as all ILC's are consumer controlled and community based. Persons with disabilities control agency decision-making and operations. Fifty percent or more of the Board of Directors must be persons with disabilities as must also be the Executive Director and any staff responsible for direct services. Directors and staff provide leadership and also serve as role models of successful Independent Living (IL) for others to follow. ILCNSCA provides direct services to empower individuals with the essential skills and self-confidence to achieve their IL goals. It also seeks positive change in the broader community to ensure rights and opportunities for participation in all areas of life and the freedom to pursue dreams.
Programs and Services
ILCNSCA serves the following cities and towns of the North Shore and Cape Ann: Beverly, Danvers, Essex, Gloucester, Hamilton, Ipswich, Lynn, Lynnfield, Manchester, Marblehead, Melrose, Middleton, Nahant, North Reading, Peabody, Reading, Rockport, Rowley, Salem, Saugus, Stoneham, Swampscott, Topsfield, Wakefield and Wenham. In keeping with federal standards for ILCs, the ILCNSCA offers the requisites of Independent Living Skills Training, Peer Counseling, Information and Referral, and Advocacy. Peer Support Groups, Social/Recreation activities, topical Workshops, and Community Access Advocacy Groups are also offered.
Information and Referral (I&R;)
The Center provides information continuously to individuals with disabilities, their families and friends and representatives of human service agencies and cities and towns regarding services throughout the North Shore and Cape Ann Service Area. I&R; keeps people informed about IL possibilities, expands awareness about the mission and activities of the Center, and reinforces the fundamental IL principle of participation in already available services in the mainstream to the fullest extent.
Independent Living Skills Training
IL Skills teach a person with a disability all of the essential skills necessary to function in today's complex society. Topics covered include household maintenance, meal preparation, nutrition, health maintenance, emergency medical procedure, housing search, landlord/tenant relations, financial management, transportation, civil rights, individual advocacy, and Personal Assistance management for those who will need assistance to meet daily needs which the nature of their disabilities prohibits them from doing. Working with a Peer Guide, a Consumer will determine his/her own goals for independent living, which will in turn determine the skill areas for training. The Consumer will then master these skills through a combination of visits with the Peer Guide, written practice, homework and actual hands-on experience at the market, on the bus, in a social setting or at a relevant community setting.
For success in IL, it is necessary to have confidence, to understand how to cope with being "out there" in society and being constantly viewed as "different." Family issues, sexual identification, as a man or woman with a disability, and assertiveness in social and business situations are common areas of concern. The same Peer Guide providing IL Skills will also assist the consumer on these personal issues. Learning to cope with challenges is equally important for success in Independent Living as any practical skills training.
Advocacy and Education
The Center brings together its Members and acts in collaboration with other organizations such as the Massachusetts Statewide Independent Living Council, Independent Living Centers, and social justice organizations to eliminate barriers to full social participation by individuals with disabilities in society. Advocacy may take any one of several forms including information in the Center's newsletter, technical assistance on laws and regulations to other organizations to assist them to take informed, appropriate individual or group action to improve access to their activities and services, or education of elected and appointed local and state officials on rights and benefits of participation by persons with disabilities.
INDEPENDENT TIMES Volume IX Issue 3, Spring 2001
Publisher: Mary Margaret Moore Editor: Shawn J. McDuff Contributors: Cedric Ashley, Kathryn Babakian, Art Daignault, Jamie Flavin, Donna Garber, Rebecca Hutchinson, Jeanne Lyons, Andrew H. Martensson, Diane McIntyre, Kathy O'Brien. The INDEPENDENT TIMES, is a Quarterly newsletter of the Independent Living Center of the North Shore and Cape Ann Inc. (ILCNSCA), 27 Congress St., Suite 107, Salem, MA 01970. Tel: (978) 741-0077 V/TTY, Toll Free Tel: (888) 751-0077 V/TTY, Fax: (978) 741-1133. Email: ILCNSCA@aol.com. We also have a Cape Ann Branch at Addison-Gilbert Hospital, Room 4, 298 Washington Street in Gloucester, Monday and Friday, 9 AM - 5 PM. Tel: (978) 283-4000 ext. 366 V/TTY. INDEPENDENT TIMES is published quarterly and welcomes the submission of articles, press releases, original cartoons, and advertisements. The editorial staff reserves the right to edit or reject material submitted to accommodate space or other concerns. Unsolicited material not accompanied by a self-addressed stamped envelope will not be returned. ILCNSCA's philosophy is based on the belief that people with disabilities can lead more independent lives when given the opportunity. We also believe that such an opportunity is a human right. This newsletter is partially funded by a grant from New England ADA Technical Assistance Center.