From the Editor's Desk
By Adriana Mallozzi
When I first took on the task of being editor, thoughts raced through my head. Would I be able to live up to the expectations of those who set this task before me? And would I do it as well as my predecessors? All I knew for certain was that this was my chance to make a difference. I read a couple of back issues and realized that while they were very informative and helpful, they would be more enjoyable with added personality. This newsletter is called The Consumer's Voice, suggesting that it gives those in our community a voice, yet I didn't hear the voice of someone like me. Instead, I heard the voices of administrators and politicians. In my opinion, this newsletter needs to establish an open dialogue with the community in order to accomplish what it was originally set up to do; give the people a voice. I think this is a fantastic goal, but we still have a long way to go before we achieve it.
Yes, I do agree that articles on bills being passed and other legislative issues are important because they affect us. However, I know that for me, actually hearing testimonials from consumers who have benefited from these improved services would make the information resonate on a personal level. Currently, this newsletter addresses mainly administrative issues, but I would also like to see it being used as an outlet for people to interact with one another and learn from each others' experiences.
The first step towards this goal has already been taken. In a new initiative to increase consumer involvement, MRC has teamed up with Partners for Youth with Disabilities (PYD) to establish a mentoring program for its consumers. The goal of this project is to ensure that young adults (aged 14-24) utilizing vocational rehabilitation services have a positive role model, support, and friend who can help them through the process of finding and maintaining employment. I met with Eleanor Axelrod (PYD Mentoring Program Director) and Jennifer Shorter (PYD Mentoring Program Coordinator) to discuss how the Voice can assist in making this project a success.
With a whole new staff, the Editorial Board and I are extremely excited to begin revamping this publication and making it representative of our community as a whole. Obviously, this is not something we can change overnight. This journey will be a bumpy ride, but with your help it will be a lot smoother. So please, get involved. Call, write, and allow this newsletter to be your voice!
MRC Mentoring Program
Are you patient, a good listener, and do you get along well with young people? Or are you in need of the support of a positive role model as you pursue your career objectives? If either of these are true, then the MRC Mentoring Program is the opportunity for you. Partners for Youth with Disabilities provides a comprehensive approach to mentoring that includes screening, training, matching, follow-up, and quarterly recreational and educational activities. Research has proven that mentored youth are more likely to perform better in school, attend college, communicate their needs, recognize and seize opportunities, make healthier choices, and advocate for themselves. If you are interested in benefiting from this remarkable experience, either as a mentor or a mentee, please contact Jennifer Shorter at 617-556-4075 x 15 or email jshorter@pyd.org for more information. You may also apply online at www.pyd.org.
Help When You Need It
The Massachusetts Rehabilitation Commission (MRC) Ombudsperson is a staff member who functions as a customer relations liaison between the consumer and the Commission. He provides the appropriate assistance and support to MRC consumers, and reports directly to the MRC Chief of Staff Jana Zwerner.
The Ombudsperson responds to inquiries from a variety of agencies and individuals. The Ombudsperson may be contacted by the consumer, a family member, a CAP advocate, medical personnel or MRC staff. Consumer concerns vary widely and might be about issues such as delays in service, their legal rights within the system, or provision of specialized services.
The Ombudsperson, after reviewing a complaint, works with consumers and MRC staff by opening up the communication process and providing problem-solving negotiations.
If an issue cannot be resolved with the assistance of the Ombudsperson, then the consumer may take advantage of their options through a process of appeals, such as an Informal Administrative Review, Mediation or an Impartial Fair Hearing.
MRC makes determinations of eligibility on disability claims through its Disability Determination Services (DDS) Program. The Ombudsperson also provides assistance to Social Security claimants and to beneficiaries of Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI).
The Ombudsperson may be contacted by telephone at (617) 204-3600 or 1-800-245-6543 voice or TTY or by writing to the following address:
Robert Donahue
MRC Ombudsperson
Customer Relations Department
Fort Point Place, Suite 600
27 Wormwood Street
Boston, MA 02210-1616
Home Accessibility Design and Funding Guides
Submitted by Erin Barrett
The Minnesota Finance Authority has made guides available on their website to assist consumers on how to design accessible home modifications and provide details on what funding programs are available from federal, state and local levels. For more information and to download the Minnesota Home Accessibility Design and Funding Guides visit: www.mhfa.state.mn.us/homes/Access_Remodeling.htm
Olver Becomes Ranking Democrat on HUD Appropriations Committee
Submitted by Dan Shannon
Citizens' Housing and Planning Association (CHAPA) is the non-profit umbrella organization for affordable housing and community development activities throughout Massachusetts. They report that Massachusetts Congressman John Olver is now the ranking Democrat on the newly constituted Appropriations Subcommittee on Transportation, Treasury, HUD, Judiciary, and District of Columbia. No other members of the New England Congressional delegation serve on this key committee. The chair of the subcommittee is Congressman Joe Knollenberg of Michigan. CHAPA recently met with Congressman Olver to discuss the importance of the Section 8 voucher program, the severe cuts to the CDBG program and the proposed shift to the Commerce Department, and other key HUD programs that are facing potential cuts.
People on the Move: Using All Transportation Options (ADAand Beyond...)
Submitted by Dave Mortimer
Applications are invited for three remaining sessions of "People on the Move: Using All Transportation Options (ADA and Beyond...)," Project ACTION's popular bus familiarization trainings. The free sessions consist of two days of instruction for travel trainers, teachers, job coaches, bus operators, transportation coordinators, independent living specialists and others who assist people with disabilities in their use of public and private transportation to get to school, jobs and other community destinations. Remaining 2005 dates are: September 7-8: Boston, Mass. (apply by Aug. 3)
See: www.easterseals.com/site/R?i=kR9CITVxZnaIQOLCgommw..
New Preventive Services under Medicare
Submitted by Dan Shannon
Thanks to the passage of the Medicare Modernization Act (MMA), millions of people with Medicare will be able to live longer and healthier lives because of new preventive services that went in to effect in January, 2005. The new benefits include a one-time "Welcome to Medicare" physical exam for new beneficiaries, cardiovascular screening and diabetes screening, all of which will help in the early diagnosis and treatment of disease. You can get additional information by visiting: www.cms.hhs.gov/partnerships
RX change if you have Medicare and MassHealth
Submitted by Dan Shannon
A tight timeline faces all Medicare beneficiaries with disabilities who also have a MassHealth prescription card. At least 50% of individuals served by developmental disability agencies such as the Department of Mental Retardation in Massachusetts, are "dual eligibles" according to estimates from the Social Security Administration. Dual eligibility means that individuals qualify for both Medicare and Medicaid Health Plans. This major change is part of the Medicare Modernization Act (MMA 2003) which eliminates Medicaid drug coverage for 6.4 million dual eligibles (those enrolled in both Medicare and Medicaid) and moves them into Medicare drug coverage on January 1, 2006. Medicaid coverage ends on the first day that Medicare coverage is effective. According to the Association for Retarded Citizens (US) the transition to Medicare coverage is complicated by the fact that many individuals with developmental disabilities or mental retardation have other associated conditions that are neurological, general medical (diabetes, etc.) and/or psychiatric in nature. Stayed tuned in if you're affected by this change and make sure you do your research as soon as possible in October. Individuals, family members, staff and others need to stay informed too.
October 15: beneficiaries will learn which plan they are enrolled in. Make sure it meets your prescription needs.
November 15 through December: change plans if the one you have been automatically enrolled in doesn't work for you.
January 1: your new plan goes in effect.
The MassHealth card still works for health appointments and long-term support services. Keep it! But if you have a Medicare card too, you won't be able to use the MassHealth card for prescriptions after December 31, 2005. Medicare beneficiaries will lose MassHealth prescription benefits in January 2006.
For more information, visit: www.thearc.org/governmental-affairs.htm
New Resource for Families of Children with Special Healthcare Needs
Submitted by Paul Tupper
The Massachusetts Department of Public Health Division for Perinatal, Early Childhood, and Special Health Needs is proud to introduce Directions: Resources for Your Child's Care, Second Edition. The purpose of Directions is:
- To help families organize health records and information in order to optimize contact with health providers and health plans.
- To provide resources and specialized information about caring for children with special health care needs.
- To improve communication among families, health providers, and health plans.
Ordering and Contact Information:
To download Directions visit www.mass.gov/dph/fch/directions in English and Spanish.
For a free copy in English or Spanish, call 617-536-0501 x 211 or 617-536-5872 (TTY).
For alternate formats, contact the Mass. Department of Public Health @ 800-882-1435 (in MA only), 617-624-5070, or 617-624-5992 (TTY).
Spellings Sets New Structure for Education Department
By Christina A. Samuels
The U.S. Department of Education announced a restructuring plan on March 4 that will move several offices under one of two umbrellas, create a new office that will handle communications, as well as new office dealing with policy development. The two new offices will be headed by assistant secretaries, who are subject to confirmation by the Senate and will report directly to the Secretary of Education. One of theses positions is Deputy Secretary of Education; The deputy secretary will supervise the offices of elementary and secondary education, innovation and improvement, English-language acquisition, special education and rehabilitative services, as well as safe and drug-free schools. The deputy secretary will also supervise precollegiate initiatives and K-12 policy which includes implementation of:
- No Child Left Behind Act
- Individuals with Disabilities Education Act
- President Bush's High School Initiative
Nursing Home Occupancy Rates
Submitted by Paul Spooner
On January 2, 2003, the average national nursing home occupancy rate was 84.4%. On April 1, 2005, it was 85.4%. Nearly 15% empty beds. Remember, this 85.4% occupancy INCLUDES those people who are in the nursing homes but who have answered the Minimum Data Set that they want to live NOT in the nursing home but in the community. They are occupying a bed that they do NOT want to be in. In Massachusetts the occupancy rate was 88.91%. Nationally, there are 1,404,406 persons (by definition they are disabled) residing in nursing homes of whom 19.5% (273,859 disabled persons) have stated they want to live in the community. In Massachusetts that number is 7,949 or 18.5% of disabled persons in nursing homes that want to live in the community.
*The data used to calculate these numbers is from the Minimum Data Set of 12/31/04.
Independent Living Centers (ILC's) are a valuable tool in helping these individuals to once again live and thrive in the community by working to see that the right supports and services are in place. In Massachusetts, 95 individuals were successfully relocated from nursing homes or other institutions to community-based living arrangements in 2004. There were 701 individuals for whom IL services prevented the necessity of entering nursing homes or other institutions and who continued living in community-based living arrangements.
Nursing home costs an average of $35,000/per person, while community based living costs $20,000/per person thus saving $15,000/per person a year. IL Centers kept a total of 796 individuals out of nursing homes. saving the Commonwealth $11,940,000 last year!
ILC Day at the State House
By Steve Higgins
Over 150 advocates, friends of Independent Living, and legislators attended the event on March 23 at the State House.
The day began with a gathering at the Grand Staircase where we heard from our legislators and some of the leaders in the Independent Living community. Rep. Peter Koutoujian spoke on the importance of the IL community educating our legislators as to the value of IL services. Charlie Carr, Executive Director of the Northeast Independent Living Program, reminded us that we must continue to work towards the ideals of IL while many of our brothers and sisters still remain incarcerated in nursing homes and institutions.
After the gathering, everyone dispersed for a brief lunch and then sought out their designated legislators. Over 150 packets were distributed. Advocates asked their legislators to support an additional $1,000,000 in funding for Independent Living in the MRC 4120-4000 account.
Inclusion at Work
By Chris Helms/Chronicle staff
Thirteen-year-old Matt Dottin doesn't care.
A teenager displaying indifference isn't news. But Matt specifically doesn't care that Nick Monteverde, one of his indoor soccer teammates, has Down Syndrome.
And that, for disability advocates involved in children's civil rights, is good news.
"It doesn't make any difference," Matt said after his Gately Youth Center squad won a match Friday afternoon, largely on the strength of his quick right foot.
Matt seems surprised a reporter would even ask about having Nick on the team. Maybe that's because staff members at Gately show their 9 through 13-year-olds how inclusion works on a day-to-day basis.
"The city likes to make a big deal about it," said Jerry Bernardo, program director at North Cambridge's Gately, "but to the kids, it's nothing. If everyone's not there, it's just not a team."
Gately will be a model as the city implements a new policy which demands all out-of-school activities be made available to disabled kids. The policy applies to anyone age 3 to 22 who is eligible for special education services under federal and state law. It will initially apply only to city-run or city-funded programs. Non-city programs will be asked to participate voluntarily.
There's no doubt Nick is a fully integrated part of the Gately team. On Friday, when Nick played forward in a match against Moore Youth Center, he made three shots. During his shifts at fullback, he made a couple of nice clearances.
The Gately kids also play basketball, hockey and other sports. And the team isn't simply inclusive. It's often victorious.
Coach Kenya Pavon speaks with pride of Gately's recent basketball youth center league championship. But learning how to include disabled kids hasn't been easy. It means sometimes tweaking rules. In basketball, for instance, a team must make at least three passes before every shot. That encourages teamwork and prevents any one kid from hogging the ball.
"Kids can be really cruel at this age," said Pavon. "It makes them aware that people are on different levels. I feel like they learn from each other."
Parents of disabled children welcome the new policy. If successful, it would do away with the need to shop for programs that happen to do a good job including all children.
Besides, it's the law. The Americans with Disabilities Act of 1990 demands nondiscrimination.
"It's like having a policy you won't speed on city streets," said Nick's father, Jim Monteverde. He was among the many Cantabrigians who worked for more than a year with the Cambridge Kids' Council to develop the policy. The City Council and School Committee passed it unanimously in mid-February.
Next steps include an assessment of what resources are needed to close the gaps. For instance, city staffers need training in how to include all children.
Monteverde applauded the Gately staff for their work with Nick.
"Gately is a great resource," he said, "They've actually learned how to include him and keep him involved."
But Gately's inclusion of disabled kids is an exception in Cambridge when it should be the rule, Monteverde said. A looming challenge for the Monteverdes comes next year, when Nick moves from the Peabody School to Cambridge Rindge and Latin School, which doesn't offer inclusive out-of-school programs.
"There are not these opportunities at the high school level," he said. "And we need them."
Monteverde said Nick has been learning not simply about sports. He's also been learning how to get along with other kids.
And they've been learning how to get along with him. Monteverde said the gains, both for the disabled and others, will be long term. For instance, if players learn they can rely on Nick during a ball game, he said, later in life they might be running a business and know they could rely on Nick as an employee.
Contact Chris Helms at chelms@cnc.com.
Red Sox to Improve Access for Fans with Disabilities in 2005
Submitted by Paul Spooner
The team will add 17 new seating spaces for wheelchair placement, and will ensure that 20 wheelchair positions and 23 associated companion seats have unobstructed sight lines in Sections 2 and 3, resulting in increasing the number of spaces for wheelchairs by more than 33% since the ownership group took over in 2002. Other changes include:
- revamped nine wheelchair positions in the infield grandstand to create improved sight lines and side-by-side companion seating.
- doubled the number of elevators in the last two years (from two to four) with the addition of a new one at Gate D that will debut during the 2005 season.
- increased signage at the park for fans with disabilities.
- purchased 24 new assistive listening devices.
In addition to the Red Sox' improvements, developer Patrick Lyons has made ADA compliance a fundamental of Game On!, his new sport cafe at Fenway Park. The restaurant, which is fully accessible to all, includes a new elevator that connects its two floors, ramp access to seating areas, ADA compliant restrooms and larger entrances with newly graded sidewalks to ease entrance and circulation on both Brookline Ave. and Lansdowne Street.
Credit Where Credit is Due
By Adriana Mallozzi
On Friday, April 29, I went to see one of my favorite artists perform at Avalon, a local club on Lansdowne St. I have been to several bars and clubs with friends where accessibility is more often than not an issue, so I was a bit skeptical when the woman on the phone informed me that Avalon would be accessible. I figured only a section of the club would be, or, like in a few places that actually do have elevators, they wouldn't be operational.
When my friend and I arrived, a bouncer ushered us right in through a side door and told us to follow one of his colleagues who would direct us to our seats. The area where the performance was to take place was sort of an arena style layout, only on a much smaller scale. There was a "pit" where people could stand, and on either side of it were slightly elevated sections (the first tier was a gradual incline/ramp, then steps to access anything above). We were taken to the top of the first tier and told that someone was getting "the ramp" so we could sit on the second tier. I couldn't believe it. They have a portable ramp that can be placed over the steps, and voilà, accessible to all!
Four hours and one beer later, the show ended and I desperately needed to use the restroom. Again, I was skeptical and contemplated waiting till I got home. My bladder didn't like that idea, so I decided to brave it and go to the ladies' room on the premises. I was in shock! It was the largest restroom I've ever seen in a bar/club! It's extremely spacious and has a sizeable accessible stall.
Avalon should be commended for their efforts and hopefully more will follow suit, making Boston 's nightlife open to the disability community.
ANNOUNCEMENTS
Recruiting Medicare Recipients for Consumer Action Board
The Medicare Rights Center is recruiting people on Medicare who want to make a difference in local, state, and national health care policy. The Consumer Action Board is currently comprised of 52 older adults and people with disabilities from 34 states. Efforts will expand to focus on policies affecting health care access and affordability. Contact Ross Kessler at rkessler@medicarerights.org.
National Autism Association Family Grants
Submitted by Dan Shannon
The National Autism Association is now awarding a grant of up to $1,500 each month to families in need of financial assistance in getting biomedical treatments, supplements, therapies, etc. for their child with autism. For more information, visit: www.nationalautismassociation.org/helpinghand.php
NUDGE Survey
RecTech is a Rehabilitation Engineering Research Center funded by the National Institute on Disability and Rehabilitation Research (NIDRR). One of the Center's 11 projects is to identify strategies and solutions for improving the accessibility of parks, trails, fitness centers, and swimming pools for persons with disabilities. The National Users with Disabilities Group on Exercise (NUDGE) is a research group assessing the extent to which current knowledge concerning recreation technology is transferred into practical application, assisting people with disabilities to engage in recreational activities.
To participate in the surrvey, visit: www.rercrectech.org/surveys/default.htm
For general info on NUDGE: www.rercrectech.org/r2.htm
To join, contact Dr. Barth Riley at nudge@uic.edu or call 800-900-8086.
We Can Be Friends!
Discover a free online community where kids with disabilities or illness can meet role models, mentors, and friends. Go to AbilityOnline.org to start the fun!
CALENDAR
Spinal Cord Injury Support Group
Part of the Greater Boston Chapter of NSCIA, this support group for spinal cord injury survivors, family, and friends meets the fourth Thursday each month at 4:00 pm, 7th floor conference/dining room at Spaulding Rehabilitation Hospital. Contact Betsy Pillsbury @ 857-222-5123 or betsy.pillsbury@verizon .net
Amputee Support Group
First Wednesday of the month from 1:00 pm-2:30 pm @ Spaulding Rehabilitation Hospital, 8th floor conference room (8A). Contact Sally Johnson, LICSW @ 617-573-2539 or sejohnson@partners.org
Stroke Support Group
Second Wednesday of the month from 3:00 pm-4:30 pm @ Spaulding Rehabilitation Hospital, 8th floor conference room (8A). Contact:
Karen Halfon @ 617-573-7143 or khalfon@partners.org or Debbie Gendron @ 617-573-2906 or dgendron@partners.org
The Consumer's Voice
To request this document in an alternative format or for further information contact Emeka Nwokeji, Director of Consumer Involvement at 617-204-3665.
Visit www.mass.gov/mrc for an online version of this document.
To receive the newsletter electronically, send an e-mail to: Consumer.involvement@mrc.state.ma.us
| The Consumer's Voice A quarterly publication of the Massachusetts Rehabilitation Commission Consumer Involvement Program. Editors: Adriana Mallozzi (ICC), Leslie Wish, David Mortimer (ICC), Eileen Brewster (ICC), Lisa Chiango, Warren Magee, Girard Plante, Robert Sneirson and Janna Zwerner. This Newsletter is an independent publication sponsored by the MRC State Rehabilitation Council. The opinions expressed in this Newsletter do not necessarily reflect the policy and practices of the MRC. They are solely the opinions of consumers of MRC programs and services. |
This information is provided by the Massachusetts Rehabilitation Commission.