From the Editor's Desk
By Elaine McHugh
This edition of the Consumer's Voice we celebrate the 20th Anniversary of the Americans with Disabilities Act (ADA). The ADA is the most sweeping disability rights law in history.
The 20th anniversary of the ADA is a time to celebrate the many gains the disability community has made. This is also a time to safeguard those gains and plan for full inclusion that will lead to independence and economic self sufficiency.
Please read Joe Panciotti's article on the July 26, 2010 ADA celebration on the Boston Common.
Alex Freeman, from Partners for Youth with Disabilities, brings us an article about MRC's own Lora Brugnaro. Lora was chosen to receive the 2010 New England Patriots Community MVP which was awarded at Gillette Stadium. Lora, we are grateful for your commitment to mentoring the disabled community!
In conclusion, we continue our Did You Know? series. Girard Plante writes an informative article on Dr. Arnall Patz.
Dino B. DeBartolomeis appointed as the MRC West District Director
Joan Phillips, Assistant Commissioner
Dino began his journey with MRC in 1969 as a high school student with a disability after having survived Polio as a young boy. In 1978 he was hired as a Vocational Rehabilitation Counselor in the Milford Area Office. Dino was promoted to Unit Supervisor in 1980 and has served as the Area Director of the Milford Area Office for 22 years. He has simultaneously served as the Area Director for the Sturbridge Area Office for the past 8 years.
In addition to his extensive human service background, Dino has been an elected member of the Milford Board of Selectmen since 1982 and has served on the Milford School Committee for 6 years. While serving in these positions, Dino has worked tirelessly in devising creative and innovative programs to assist people with disabilities to live and work independently in the community.
Dino continues to be recognized as a strong advocate and a knowledgeable leader addressing major issues affecting people with disabilities.
I look forward to the continued success of the MRC West District under the leadership of Mr. Dino DeBartolomeis.
The Massachusetts Rehabilitation Commission 2010 Youth Summer Employment Initiative
Lorraine Barra, North District Director
This initiative was originally developed during the spring of 2009 as part of Gov. Deval Patrick's strategic plan "Massachusetts as a Model Employer." The Massachusetts Rehabilitation Commission, Vocational Rehabilitation Division, through the Transition Works Grant used federal stimulus funds for this Executive Office of Health and Human Services (EOHHS) pilot for young people with disabilities to intern in state agencies.
The pilot program sponsored work experiences for 10 youths with disabilities at several Executive Branch state agencies in Boston during the summer of 2009. The results were extremely positive for both the employed youth as well as the participating state agencies. Young people received valuable work experience, developed a worker identity, and learned about work opportunities within the Executive Branch of state government.
MRC Commissioner Charles Carr directed the MRC Transition Works Grant to again utilize federal stimulus funds to replicate and expand the summer youth internship program for the summer of 2010. The MRC 2010 Youth Summer Employment Initiative will support 20 youths with disabilities statewide from all three grant demonstration cities: Boston, Worcester and Springfield. State agencies such as MRC Area Offices, MRC Central Administrative Office, PCA Quality Home Care, Disability Determination Services, Department of Mental Health, Department of Revenue, U Mass Medical School, Division of Medical Assistance, Department of Conservation and Recreation, Quinsigamond State Park, Quinsigamond Community College, Holyoke Community College, and the Governor's Office are participating as work sites.
MRC qualified high school and college students with minimal or no prior work experience are participating in the program. The youths have an opportunity for a paid experience over an eight week period. The MRC will provide resume development, soft skills training, job site match and a stipend salary.
The summer youth interns are performing a number of job tasks in these agencies. Some interns greet customers and answer phones, some work in clerical areas while others will create databases and do Internet research. There are also two interns working at a state park as grounds maintenance workers. At the end of their summer experience the interns will meet with the Transition Works staff to review the summer and share what they have learned.
The Massachusetts Rehabilitation Commission and Transition Works Grant place a high level of importance for youth with disabilities to have as many work experiences as possible. These experiences help youth learn about the world of work as it relates to forming their own future career goals.
MRC Vehicle Modification Program
Eugene Blumkin, PE (WI), CPE, CDI
Principal Engineer, Rehabilitation Technology
The MRC Vehicle Modification (VM) Program has been in existence since early 1970's. Initially, it provided eligible Vocational Rehabilitation consumers with simple vehicle modifications such as mechanical hand controls, car-top wheelchair carriers, raised roofs, dropped floors and wheelchair lifts on full-size vans and the like.
Gradually, more sophisticated types of driving equipment and modifications were introduced. Low-effort steering and braking systems, high-tech servo driving equipment and lowered-floor minivans permitted consumers with high levels of disabilities to become completely independent in their transportation needs.
In the early 1990's the Vehicle Modification Program became a part of the Rehabilitation Technology Department (currently Independent Living and Rehabilitation Technology).
Currently, the Program provides the following services: Driver Evaluations, Vehicle Modifications and Driver Training. Depending on specific modifications required the services could be structural (major) or non-structural (minor).
Structural services are those that include significant modifications to a vehicle or its systems. Lowered floor minivans, full-size dropped floor vans, low-zero effort steering-braking, automatic wheelchair lifts, door, roof and entry modifications and electric tie-downs. High-tech vehicle controls are examples of such modifications. Non-structural modifications are add-on devices or simple modifications that usually do not include significant changes or alterations to the vehicle or its systems structure. Examples of such modifications are hand-controls, left foot gas pedals, hoist wheelchair lifts and steering knobs.
In addition to the services above provided by contracted organizations, the staff of the VM Program provides consultations, bid management and vehicle inspections. All paid services (except evaluations) are subject to financial needs eligibility-determined by MRC Vocational Rehabilitation Counselors.
MRC VR consumers are eligible for structural vehicle modification services if they are currently employed (job retention) or are within one year of employment.
The cost of services varies significantly and could be as low as $150 and as high as tens of thousands of dollars. The VM Program, however, is one of the few programs that provide "immediate gratification" by preventing consumers from losing their employment or by providing a necessary means for successful job search. The VM Program also provides technical and bid management assistance to the consumers of Independent Living Centers and consumers of other agencies.
For more information please contact Eugene Blumkin at Eugene.firstname.lastname@example.org
Lora Brugnaro, 2010 New England Patriots Community MVP
Alex Freeman, Partners for Youth with Disabilities
MRC employee and Partner for Youth with Disabilities' (PYD) Mentor Match program mentor, Lora Brugnaro, was selected by the New England Charitable Foundation as a 2010 New England Patriots Community MVP for her outstanding commitment to mentoring and the disability community. Lora received her award in a ceremony at Gillette Stadium on May 27.
Lora began mentoring with PYD in May 2005. She was matched with Rosie, a 15-year-old with Cerebral Palsy and cognitive disabilities. Rosie felt isolated and experienced difficulties at school. Lora encouraged Rosie to try new things during their meetings, going to the mall, museums and PYD events. They met frequently, more than the required monthly meetings, and developed a bond.
Lora taught Rosie independent living skills. Rosie had little concept of money; Lora helped Rosie budget during outings to learn the value of money. Rosie inquired about employment; Lora had Rosie conduct informal job inquiries by interviewing clerks and salespeople. These combinations of enjoyable and educational experiences indicate a remarkable mentor.
In addition to mentoring Rosie, in April 2007, Lora began mentoring another youth: Alyssa, a six year-old. Alyssa's family hoped to gain an "understanding of Alyssa's disability, to see Alyssa can lead a productive life despite Cerebral Palsy." Lora has been an invaluable role model and resource. Alyssa's mother wrote that Lora's "advice is helpful to the entire family."
Alyssa and Lora's first meeting included Rosie. The three ladies went to a horse show and pizza party. Recently, Lora and Alyssa rode horses at a stable. Last year, Alyssa and her family joined Lora at the Walk for Hunger. Alyssa's father commented it was "an inspiration" to watch Lora walk five miles with her cane, showing Alyssa "she has the same capabilities."
Alyssa's family has noted Alyssa "feels more comfortable expressing herself." Alyssa was self-conscious about the way she physically speaks, but she has gained confidence as a result of hearing Lora speak. Further, Alyssa's school performance has improved since her mentoring relationship with Lora began. Both mentees (and their families) have reflected in PYD surveys that their mentoring relationship has played a significant and positive role in their lives.
For Rosie and Alyssa, Lora is an especially relevant role model, as they share a common trait: Cerebral Palsy. As an employed, engaged and active woman, Lora has provided a meaningful, relevant and powerful example of an adult with a disability who is flourishing in her community. This example has provided Rosie and Alyssa with inspiration and a path for success. As a caring, consistent force in their lives, Lora has provided the extra support and guidance all youth need.
Lora's greatest impact is that she serves as a living example of what can be achieved when individuals focus on abilities, not disabilities. She is a role model of success, and uses herself to promote positive change - not only for her mentees, but also the disability community within which she is significantly entrenched. Congratulations, Lora!
A leader in its field, the Mentor Match program's goal is to help young people with disabilities meet their full potential for personal development and independence in adulthood by creating one-to-one mentoring matches with a caring adult. Our matches meet in the community a minimum of once a month in person and communicate weekly via phone/email. Further, all matches commit to a minimum of one year. To learn more about Partners for Youth with Disabilities and the Mentor Match program, visit www.pyd.org or contact Alex Freeman, Mentor Match Specialist, by phone (617-556-4075 x 18) or email (email@example.com).
Good News Garage
ARRA Project Staff
B. C. is a young man who wasn't expected to survive his traumatic brain injury. When he did recover, he found his way to the Massachusetts Rehabilitation Commission (MRC) Springfield office, seeking guidance for his education and employment plans.
Years later, after B.C. had earned a Bachelor's degree from St. Anselm's College in Business Management, MRC found him a paid internship with the Social Security Administration (SSA) for the summer.
To make this possible, B. C.'s parents drove him from South Hadley to Springfield every day. In August, SSA offered B.C. a full-time permanent job as a Customer Service Representative. B.C. still needed transportation.
The Vehicle Donation Program, sponsored by the MRC Research, Evaluation and Development Department with ARRA funding, was able to provide B.C. with the transportation he needed. Currently B.C. has a "new" used car to go with his new job. The Good News Garage is responsible for obtaining, refurbishing and distributing donated vehicles to qualified MRC consumers.
Time to Celebrate the 20th Anniversary of the Americans with Disabilities Act
The 20th Anniversary of the Americans with Disabilities Act was celebrated on the Boston Common on July 26th between noon and 2:30pm. The Disability Policy Consortium (DPC), in collaboration with many other disability organizations, did the planning.
The Massachusetts Bay Transit Authority, one of the partners, had an air-conditioned double body bus on display. The bus was there not only to show off the equipment, but also to provide a cool place for those that might need to get out of the heat. Bottled water was on hand. I do not recall the generous donor who provided it, but I am more than thankful they did. If there was ever a great reason to get out of the house and commemorate an historic occasion this was it.
As I approached the corner of Beacon and Charles Street I could hear cheerful music in the distance. As I got closer I could see several hundred people spread out over the lawn engaged in very animated conversation. As I walked along the pathways of the Common I knew I was headed in the right direction because someone had thoughtfully provided signs pointing the way for me.
Entertainment for the occasion included comedian Jonathan Katz, the Matt Savage Trio, and the Tommy Filiault Band. Equally entertaining, as well as informative, was the guest speaker John Hockenberry. Mr. Hockenberry's presentation was almost spiritual in nature.
Along the paved edge of that area were tables, staffed by volunteers from 38 diverse organizations representing clubs, agencies, collaboratives, authorities, commissions, unions, schools, and societies. There were folks from near and far; from Malden to Worcester and beyond.
The event was not just to celebrate the enactment of the Americans with Disabilities Act (ADA), but to remind us of the work ahead. We were reminded of the many demonstrations which brought ADA issues to the front of public awareness. The demonstrations before legislative bodies to educate them to our needs, the demonstrations before the media to show that we are still here and will not go away; the demonstrations to be seen, heard, and make a contribution.
I think the most valuable aspect of the ADA celebration was the opportunity to interact with those throughout the state that we don't get the opportunity to see in person. Hopefully this will become an annual event in various parts of the state where we can come together, meet and greet old friends and be inspired by the new friends we have not met yet.
A conversation with Mike Ferriter
Adversity never prevented Mike Ferriter from picking up a life that seems shattered to people unaware of the countless challenges people with disabilities confront daily. Yet the longtime activist, injuring his spinal cord in May 1979, as a 20-foot timber fell from a crane that tossed him off scaffolding he stood on while working aside the Connecticut River, realizes that perceived appearances by curious onlookers is human behavior.
After his accident, Mike spent five months in the Spinal Cord Injury unit at the West Roxbury Veterans Hospital. Painstaking physical and occupational therapy brought him a level of mobility that allowed him to gain a new beginning after this life-altering event. But his in-patient stay was not finished as he required four more months at Tufts New England Rehabilitation Hospital to genuinely recover.
Mike returned home to his wife and their young son and daughter. Born in Springfield, Mass, Mike knew well the political landscape across the Commonwealth. That intense interest, and his acute awareness after seeing people possessing all manners of disabilities during rehab, propelled Mike to tackle a moribund system that prevented them from joining their rightful inclusion into the larger community.
The 58-year-old quadriplegic marched in Washington, D.C. protests against the Vietnam War. He came of age during the Civil Rights Movement, witnessed the birth of the Women's Liberation cause, and at the height of the Civil Rights marches and protests in 1968, the Disability Rights Movement grew out of the breeding ground of activism at the University of California-Berkeley. Those history-making events further catapulted Mike's innate yearning to bring justice and comfort to people in need.
In 1982, Assumption College became the setting for Mike's transition from protestor of other injustices to fighting a cause as foreign as the disability he grew into. Graduating with a degree in Social Work, Mike then entered Boston College, where in 1989 he earned a Master's degree in Social Work. Through the proud Eagle alumnus' college-attained skills, Mike ventured into the Boston area volunteering at the Boston Self-Help Center.
After two decades counseling people with disabilities, Mike is busy as President of the Greater Boston Chapter of the National Spinal Cord Injury Association. He is well-known at the State House from his ongoing relationships with legislators, cultivated by his friendly, disarming demeanor. He is highly regarded by the leaders of the state-administered commissions and agencies, as well as private sector nonprofits that provide services to people with disabilities across New England. Recently, Mike piled on another achievement: being nominated to the National Spinal Cord Injury's Hall of Fame.
On a sizzling Sunday in mid-July, Mike's characteristic composure and patient persona kept him cool during our free-flowing discussion on the issues essential to the advocate.
Q: How did you get involved in benefiting the lives of people with disabilities?
MF: My turning point in disability rights activism arose from the people I met during college internships and at Boston Self-Help. The message from all of them was that we can accomplish big things by joining together. Only then, they added, would success and results follow. So I learned that healing individually and then uniting we would be a force for change.
Q: Did the people you meet and assisted in directing their lives truly change attitudes?
MF: Absolutely (laughs)! And they've gone onto bigger and better things.
Q: Part of the injury is anger. And your confidence was lagging after your injury. Anybody whom you recall that aided you in a positive way to climb out of your misery?
MF: I met a woman whose disability was more serious than mine. Donna Murphy had Muscular Dystrophy and was not expected to live past age 30. She was 32 when we met! As I asked her what she was doing with her life; she amazed me when she revealed she finished her Master's degree in Rehabilitation Counseling.
Q: Your involvement with the National Spinal Cord Injury Association, how did that begin?
MF: Again, my interest goes back to my months in rehab. Yet my active involvement started soon after graduating Boston College. It originated from the support groups I monitored at New England Rehabilitation in Woburn in 1990.
Q: And how did you become active with the Greater Boston Chapter?
MF: Meeting the people from the support groups - all living with spinal cord injury - provided me the impetus to join the group who wanted a local chapter. They knew something was missing. And their keen insight and determination is responsible for today's chapter and its many successes.
Q: You're now sort of 'retired' from counseling people with disabilities after two decades. What fills your days?
MF: I am working on convincing Congressmen to reverse an amendment passed by President Obama. Also, in my free time I relax painting pictures using watercolors.
Q: Will your unique brand of activism on a host of human rights projects end?
MF: No! I plan on continuing influencing our members in the U.S. Congress on disability rights issues and civil rights matters.
Did You Know?
That a common cause of blindness in premature infants was found and eliminated shortly after the end of World War Two by an aspiring ophthalmologist? Dr. Arnall Patz, who won the Presidential Medal of Freedom in 2004, is the world renowned ophthalmologist whose keen observations of premature babies laying in newly-invented incubators that secured a climate of pure oxygen, also stole their vision.
"It had become standard practice to put babies in incubators and crank up the oxygen," Patz recalled in an interview with the Baltimore Sun in 2004. Yet Dr. Patz harbored no resentment toward the physicians and understood their treatments were common practice to save the infants' lives. He tried convincing a largely wary medical community in the United States that his theories proved worthy of further research. But he would not be granted funding because his proposal was deemed "unscientific and possibly dangerous." Not to be deterred, Dr. Patz pressed on, performing research on his own.
Dr. Patz discovered that vast amounts of oxygen provided to preemies brought on retrolental fibroplasia, which was that generation's biggest cause of blindness. During his extensive and comprehensive trials, Dr. Patz learned that "Oxygen caused blood vessels in the back of the eye to constrict. In a doomed attempt to compensate, the eye sprouted twisted vessels that would eventually bleed and destroy the retina," the Sun reported in its 2004 piece.
Because of Dr. Patz's miraculous findings and eradication of the infant eye disease, he won the Lasker Clinical Medical Research Award in 1956. The prestigious honor was presented to him by Helen Keller. Upon receiving the Lasker honor, Patz fondly recalled Keller's enthusiasm in the Sun's 2004 article: "Helen Keller's eyes were so sparkly."
Dr. Patz was director emeritus of the Wilmer Eye Institute at Johns Hopkins University. He also joined the Johns Hopkins Applied Physics Laboratory to establish the first argon lasers to treat diabetic eye disease as well as various other retinal disorders. Dr. Patz died March 11 at his Pikesville, MD home. He was 89.
To learn more about Dr. Patz's remarkable career and life, do a Google search, or visit www.latimes.com for the March 15, 2010, issue of the Los Angeles Times and read the write up in his obituary.
Safe Options to Receive Your Monthly Social Security Benefits
U.S. Department of the Treasury, Financial Management Service
Used with permission from Update a DMH publication.
Do you or someone you know still receive Social Security Benefits by check via the U.S. Postal system? The U.S. Department of the Treasury suggests two safer, easier alternatives to paper checks:
- Direct deposit: The Go Direct campaign gives people with bank accounts a free, easy way to switch from paper checks to direct deposit, and have their payments automatically deposited into a checking or savings account each month (www.GoDirect.org).
- Direct Express card or Debit MasterCard: People who don't have bank accounts can sign up for a prepaid debit card, called the Direct Express(r) card, which is issued by the Treasury's financial agent. Details about features and fees for optional services can be found at www.USDirectExpress.com.
Artists Beyond Challenges Task Force
The Artists Beyond Challenges task force (formerly known as the Artists with Disabilities task force) had exhibit tables at the South Station concourse in Boston, MA on July 21, 2010.
This was an exciting opportunity to exhibit and sell artwork. Nine of our artists had exhibit tables at the South Station concourse. Many passers-by stopped to browse and, more importantly, to buy.
Small art pieces, such as greeting cards, wallets, purses, tissue holders, and hand crafted jewelry were the best sellers of the day. It seemed that any item that was easily carried sold quickly. The event generated interest and questions about the unique nature of the group and their work. The artists enjoyed a day of bountiful sales and good company. This event was a good learning experience for the planning of future exhibition and sales events.
The Artists Beyond Challenges task force is working on future exhibitions and sales events. In particular we hope to have another South Station sales event soon. We are grateful for the self-employment opportunity!
The 2010 Massachusetts Youth Leadership Forum
Mary Ellen MacRae
Turning 22 Services Coordinator
Easter Seals and the Boston Center for Independent Living joined forces to make use of federal stimulus funding through the Mass Rehab Commission to reinstate a three day Youth Leadership Forum (YLF) in Massachusetts. The 2010 Massachusetts YLF was an organized effort from multiple agencies which also included the Institute for Community Inclusion, Partners for Youth with Disabilities, and the Center for Human Development.
The buzz was all over the place! Massachusetts finally brought back the three day event and it was going to be big! With twenty five delegates (high school juniors and seniors with disabilities), and 10 peer leaders running the show, Bridgewater State College was about to be energized by some powerful young adults.
MRC Commissioner Carr kicked off our event with some inspirational words and an activity designed to help youth find their voices! The next three days consisted of leadership workshops, social networking, personal leadership plans, and most importantly, delegates recognizing that this community is a family; that even though they are spread across the Commonwealth with different issues, they are able to come together for one major cause: EQUALITY!
The YLF was graced by many guests as well. The delegates and peer leaders were lucky enough to lunch with some of Massachusetts' finest. Paul Spooner, our keynote speaker, charged the luncheon with not only witty humor, but some real food for thought. He challenged the youth to pick up torches as they are passed, as well as encouraging them to pave their own pathways. The youth really enjoyed this piece of the event, understanding that they could sit down with professionals with disabilities and ask them "how did you become a teacher or a lawyer?" only to realize that their own goal of becoming a teacher or lawyer isn't as far fetched as they thought.
Even though day three was met with some sleepy faces at breakfast, all that quickly disappeared when the delegates were tasked to come up with issues for State Representative Jim Cantwell, who was arriving that morning. Representative Cantwell listened to the delegates and peer leaders talk about health care coverage, access issues, and MCAS concerns and validated each and every issue brought to the table. Cantwell also encouraged them to continuously use their rights as productive constituents of Massachusetts. For some, this was the first time they had ever seen a State Representative, let alone be heard by one. For this, we are very grateful to Representative Cantwell for giving the delegates this experience.
It is difficult to capture into words everything that came out of the YLF, so I'll end with this quote by Johnetta B. Cole, American academic and first African-American President of Spelman College. This quote was chosen by a peer leader and was displayed on the backs of everyone's t-shirts as they left on the last day. "We are for difference; for respecting difference, for allowing difference, for encouraging difference, until difference no longer makes a difference"
Employment NOW Update
The Employment NOW Coalition met on June 4, 2010. The purpose of the meeting was to receive an update on implementation of the States Model Employer Initiative.
The chair introduced Ron Marlow, Paul Dietl, Sandra Borders, Myra Berloff, and Stan Eichner. These are the people charged with bringing those in attendance up to date on the Massachusetts as a Model Employer Initiative
A year ago, on June 25, 2010, Governor Patrick introduced an executive order making the state a model employer, a policy of his administration. The following information is some of what was shared:
- 1,169 people, approximately 2.6% of the executive branch workforce, have self-identified as having a disability after the concerted self-identification campaign.
- 3.1% of managers have self identified as having a disability and 61%of all those self-identifying are in management.
- The Massachusetts Rehabilitation Commission (MRC) hired twenty paid interns. This action reflects the stated goal of Commissioner Carr of "focusing on youth to end the cycle of poverty in the disability community."
- All $100,000 of the reasonable accommodation fund was used (this fund is only tapped when an agency can't meet an accommodation request through its existing budget).
- The Governor is reaching out to private industry to encourage them to emulate the initiative of his administration.
We were made aware of the actions taken and efforts made to make the policy a reality. So, regulations had to be written, responsibilities delegated, accountability assigned, barriers removed, and cultures changed.
Bill Henning pointed out that one concern is the lack of information on the number of people with disabilities who have been hired. It was stated that most new hires don't self identify and that state hiring is decentralized. While respecting that many people will keep their disability private when seeking a job, we believe a more affirmative, coordinated effort to recruit and hire people with disabilities needs to be part of Model Employer.
Other members suggested:
- Review self-identification by state agency to determine the need for more training. Ascertain which agencies are the most effective in employing people with disabilities.
- Promote the use of interns with legislators and other offices within the State House.
- Ensure that people with varying disabilities play prominent roles in the training efforts.
A proposal was made and accepted that the membership of Employment Now be updated three times a year to keep the coalition informed of the progress of Model Employer. Also agreed upon was a request to have a written report by mid-summer, which will summarize the results to date of the initiative.
Bill Henning reminded us that Model Employer is a commendable undertaking and we continue in our commitment of working with others to ensure success, especially in the area of hiring people with disabilities.
Featured Artist: Gregory E. Albert
Gregory Albert resides in Brookline, Massachusetts. He is a jewelry designer and owns Grandma's Jewelry Box, an on line jewelry store.
A visit to Gregory's website shows the types of jewelry he designs and the materials he favors. http://grandmasjewerlybox.webs.com
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.
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