From the Editor's Desk
Elaine McHugh

Many important things are happening. We are beginning to see the start of Community First, the Patrick Administration's long term care policy. This policy will expand on important home and community based service development that has already taken place through the long term care programs of the Executive Office of Elder Affairs, the Executive Office of Health and Human Services, and MassHealth. John Chappell has written an article explaining the philosophy of Community First and detailing the beginning work for this most important program.

The Consumer Conference held at Northeastern University on June 12, 2007, was well attended. Praise for the Conference and the facilities at Northeastern. Do read Dr. Susan Ventura's article, she is a Professor of Physical Therapy at Northeastern University.

The Moro Fleming Award was given to two people this year in recognition of their service to the Massachusetts Rehabilitation Commission. Robert Sneirson and Warren Magee were the Moro Fleming Award recipients. Both have written articles about their experience.

Community First: Massachusetts Moves to Consumer Choice for Community Living
John Chappell

On September 27, 2006, Massachusetts Governor Mitt Romney signed the Equal Choice Bill into law, bringing to fruition a five-year legislative effort to give seniors and individuals with disabilities the choice of where they will receive their long-term care services. This major milestone in the movement toward community living happened only after many individuals with disabilities and those from the elder community banded together to push for the right to make a choice in where an individual lives; either in a nursing home or in a home in their community.

This change did not come easily. The Americans with Disabilities Act first established the rights of Americans with Disabilities to live in the community as proclaimed in the Olmstead decision. On June 22, 1999, the United States Supreme Court held in Olmstead v. L.C. that the unnecessary segregation of individuals with disabilities in institutions constituted discrimination based on disability. The Court ruled that the Americans with Disabilities Act may require states to provide community-based services rather than institutional placements for individuals with disabilities.

Therefore, this decision became the basis for the move toward choice and for a more community based/independent living philosophy. The implementation of a strategy is yet to come. Through the leadership of Governor Patrick, Massachusetts is developing a Medicaid waiver which will allow the state to use Medicaid money for community options services that would otherwise be used to house people in nursing homes. This waiver called an 1115 Demonstration Waiver is scheduled to be implemented on April 1, 2009.

The following is a brief summary of the proposed waiver and the people it will serve:

Target Population Eligibility

The Demonstration Waiver would serve three groups: The Imminent Risk Group would consider current aged and disabled 1915(c) waiver program participants, the traumatic brain injury 1915(c) program, and community-dwelling individuals meeting the state's criteria for needing a nursing facility level of care. The second group, the Prevention Group, would include at risk individuals needing nursing facility services. A third group would include nursing facility residents seeking to transition to the community. Financial eligibility criteria would be expanded. Specifically, individuals may retain up to $10,000 in assets and still qualify.

Number of Individuals Served

Approximately 17,000 individuals annually.

Benefit Package

All groups would receive State Plan services; however, the Prevention Group would not receive nursing facility or chronic hospital services. In addition, all groups would receive care coordination and behavioral health services. An enhanced package (compared to the existing HCBS 1915(c) program) of community-based services would be available to all demonstration groups. All groups would have a choice to self-direct certain services.

There are many different types of community services that would be available. Here is a list of some of the most prominent services in the new waiver:

  • Transition services from nursing facilities (one time expenses)
  • Support in the home (assistive technology, individual home care and other types of supports in the home)
  • Personal Care Services (laundry, chores, companionship, home deliveries)
  • Family supports (respite care, etc.)
  • Day Services (day habilitation, peer counseling, behavioral health, vocational supports)

This new waiver is only a beginning and part of the overall philosophy of Community First! There is more to come as Massachusetts moves closer to the day when individuals will have the ability to live in communities of their choice with the supports they need to work, live and play in their own homes.

Stay tuned.

From the Director's Desk
Emeka Nwokeji

On June 12th, The Massachusetts Rehabilitation Commission held its 27th Annual Consumer Conference at Northeastern University's Curry Student Center in Boston. A very vibrant Conference complimented by a spring-like sunshine, illuminated the beautiful campus landscape. It was a day to joyfully say "good morning" to over 300 attendees and to express our gratitude for the presence of over 40 student and staff volunteers from the University's physical therapy department.

Conference attendees were greeted with respect, attention, and care. An experienced team of MRC staff tended to the registration area, Individual Consumer Consultants and Northeastern University student volunteers. Attendees included staff from agencies within the Executive Office of Health and Human Services, Independent Living Centers, and community based agencies from across the state serving people with disabilities.

The theme of this Conference "Empowerment through Employment, Advocacy and Action" provided 16 educational workshops in Vocational Rehabilitation and Training, Community Living and Advocacy, and Community Services. Workshop topics ranged from Asperger's Syndrome and Employment Success to Managing Social Security Benefits While Going to Work.

As the Director of Consumer Involvement, I welcomed everyone and introduced Dr. Susan Ventura, a faculty member in the Physical Therapy Department. Dr. Ventura finished her remarks by introducing the student volunteers and personal care attendants, and giving information about the location of elevators, exhibitors, workshops, and other amenities. At lunch, MRC Commissioner Charles Carr welcomed attendees and introduced the Vice President of Northeastern University Community Affairs and former Secretary of EOHHS, Mr. Robert Gittens. Dr. Jean Maguire was the Conference luncheon speaker. Warren Magee and Robert Sneirson were the Moro Fleming Award recipients.

The success of this Conference is attributed to the partnership between the MRC and Northeastern University. We are already planning next year's Conference and look forward to seeing you there.

2008 MRC Consumer Conference: A Welcome Addition to the Northeastern University Community
Susan Ventura, PT, PhD

Allow me to introduce myself. My name is Sue Ventura, and I have been an ex officio member of the Statewide Rehabilitation Council (SRC) since 2007. I am also a faculty member in the Physical Therapy Department at Northeastern University.

It was during one of former Commissioner Bartels' last SRC meetings in 2007 that he sadly informed the Council that, like 2007, there would be no funding to support the Massachusetts Rehabilitation Commission Annual Consumer Conference (ACC) in 2008.

Members of the SRC were determined to try to find a way to make it possible to hold a conference in spite of limited funding, so the ACC Committee was charged with exploring possibilities. Finding a University that might be able to donate the use of space was high on the priority list, so it just seemed like a natural fit for me to approach Northeastern's administration. My request to Northeastern University's Vice President Robert Gittens (former Secretary of the Executive Office of Health and Human Services) was met with enthusiasm and a "can do" attitude. We developed a Northeastern ACC Committee to work in collaboration with the SRC-ACC Committee and together we made it happen!

Through the generosity of Northeastern's administration, 50 faculty and staff volunteers, and an allocation of minimal funding by recently appointed MRC Commissioner Charles Carr, we were able to hold the one day Conference that was enjoyed by 300 participants on June 12, 2008 at the Northeastern University Boston campus.

People on campus are still talking about what a wonderful experience it was to bring MRC consumers and staff together with Northeastern students and faculty. Perhaps the best news is that, in the process of planning the Conference, Commissioner Carr and Vice President Gittens agreed to establish a partnership through which we could share resources for the benefit of both the MRC and the University. We are now in the early stages of exploring innovative projects, so stay tuned for upcoming announcements!

The Biggest Accomplishment in My Life
Warren W. Magee, Jr.

This year's Massachusetts Rehabilitation Commission's Annual Consumer Conference was well put together by the State Rehabilitation Commission's Consumer Conference Planning Committee along with collaboration from Northeastern University staff and volunteers. I learned a lot at the Conference this year as I always have. What amazes me is how many consumers, both old and new, I am able to network with.

I got the biggest shock of my life when State Rehabilitation Council colleagues decided to present me with this year's Moro Fleming Award for my continuous efforts to make life better for people with disabilities. I have to tell you I did not do this by myself. I have always been supported by people who believed in me and my work in the community: former Commissioner Elmer Bartels, Emeka Nwokeji, Owen Doonan, Keith Jones, Bill McCarriston, Pat Sheely, Manny Gross, and the late Robert Donahue who always encouraged me to "never stop fighting for what you believe in and what you stand for!" I share this award with my fellow Moro Fleming Award recipient Robert Sneirson. Bob and I have spent many years working with and learning from each other. I especially learned a lot from Bob working with him designing a manual to help the MRC vocational rehabilitation staff improve their work as the number of consumers increased.

I dedicate the winning of this award to the following people who have been a significant source of support in my life: My mother, Sylvia B. Moore-Magee who passed away before I got started with the SRC. "I DID IT MOM!" My Best friend Tyrone A. Leach, now deceased (1954-2008), who always said "Go get them young blood!" To my wife Lisa, Thanks for telling me "keep going". Finally, to my daughters Nell and Sholisza, I am so grateful for your presence in my life.

Receiving the Moro Fleming Award
Robert Sneirson

I want the readers of this publication to take a short thought journey with me. I was walking down the hallway at the Brookline MRC office just before my regular vocational rehabilitation appointment about three months ago when Bart Nichols, the Area Director of the Brookline MRC office, stopped me and told me that he had just submitted to the Administrative Office a nomination form for the Moro Fleming Award. I was flabbergasted to say the least.

I never thought my advocacy was on a par with the other great advocates such as Robert Donahue, Melvin Ritter, and Jean Turner who had won the Moro Fleming Award in the past, so I put the nomination out of my mind. It was not until I saw the chair of the State Rehabilitation Council, Joe Bellil, about a week before the MRC Consumer Conference that I remembered I was nominated for the Moro Fleming Award. I asked Joe who got the Moro Fleming Award. He sheepishly replied that he did not know. It was not until five minutes before the presentation, when Bart came over to me and said for me to start walking over toward the podium because he was going to give me the Moro Fleming Award that I began to believe my advocacy was on a par with those great MRC advocates.

I want to thank Commissioner Carr, Bart Nichols, and all his staff for giving me for the 2008 Moro Fleming Award. I would be remiss if I did not thank my partner in this project, Warren Magee. Without his hard work, this project would not have gotten off the ground.

I received my award for development of a "how to" guide for vocational rehabilitation counselors doing transition for youth with disabilities who are transitioning out of the world of school to the world of work. I always considered it to be a good piece of work but I never thought it would create the buzz amongst the Area Directors that it did. I always considered advice such as putting an MRC vocational rehabilitation counselor into each high school in the Commonwealth to be common sense and not the revolutionary document that it has become.

The Importance of Exhibitors at the Consumer Conference
Amjed Kemal

The traditional form of marketing is changing and our consumers are more sophisticated and price sensitive. They expect products and services to be delivered faster and more conveniently. And they have no qualms about switching to competitors.

At the same time, traditional marketing tools are less effective than in the past. Products are not much different from each other, pricing is quickly matched by competitors, advertising is expensive and less effective and sales force costs are rising.

Consumers are constantly being interrupted by thousands of marketing messages, making it easy for one message to get lost in the overwhelming clutter of communication. Plus, consumers no longer have a well defined set of products and vendors they will consistently seek out to fulfill a need.

What does this mean for future Massachusetts Rehabilitation Commission Consumer Conferences? It means conference organizers need to focus on services both exhibitors and attendees perceive as valuable and deliver them with fresh appeal.

Consumer value, change, convenience, and communication all make up the essence of a 4 Cs marketing approach that will take the Consumer Conference to another level.

Consumer Value

Our consumers are value conscious. The conference planning committee should support their expectations by thinking "exhibitor" and thinking "attendee." We should encourage our committee to do whatever it takes to attract and showcase exhibitors that deliver goods and services necessary to our consumers.

The committee should be actively working to develop ways in which we can continually differentiate ourselves from competing conferences and events. Working to involve consumers and exhibitors for their input and critique is a priority goal for conference planners.

Change

Is our Consumer Conference a success the way it is? Do we believe we have the perfect formula that works? If we say yes, we are heading for decline. Our conference planning committee needs to fall in love with change. If we don't grow and change, we will become stale. Change, however, has to be in line with the essence of our conference and needs to be relevant. Just as our attendees expect to see and experience something new and exciting from visiting our exhibitors' booths, that expectation should also define our overall event.

Experimentation is the name of the game. Each year we should try introducing new ideas and concepts into the Consumer Conference. The change should not be drastic; small subtleties can make the difference, especially when you implement ideas supplied courtesy of our consumers. Communicate changes and let our consumers know we are listening to their suggestions.

Convenience

How easy is it to attend or exhibit at the Consumer Conference? Are our systems user friendly? The MRC must consider every piece from the exhibitor manuals, to the registration desks at the conference. What can be done to make attending and exhibiting at the Consumer Conference a hassle-free experience? Consult with our vendors, staff, exhibitor advisory committee, and outside consultants for ideas and suggestions then try them out. Our challenge is to constantly make our conference the most convenient.

Personal Care Attendants
Girard Plante

Economic uncertainties and a seemingly endless stream of bleak fiscal forecasts are sending people scrambling to find a second job. But a major obstacle to accepting employment is the lack of health benefits. The coffee conglomerate Starbucks, for example, provides health insurance to its employees working only 20 hours per week.

While those hours may be enough for some people to live on, others like Christine Sutton found a niche as a Personal Care Attendant to supplement her income. Sutton's primary job is as a Teacher's Aide for children with special needs at the Jordan-Jackson Elementary School in Mansfield. She receives health insurance, too. "I'm single and a second job is necessary. I could not afford to buy private insurance," Sutton says.

Massachusetts demands that employees have health insurance, but many people can't afford it. The Commonwealth's Personal Care Attendant program is one of the oldest and most successful public policy programs, yet still lacks benefits such as health insurance or sick leave. "It would be wonderful to have sick time. For somebody dependent on me, I cannot afford to go into work ill," adds Sutton. Her concerns include the boy she "loves" and cares for seven days a week and travels 60 miles round trip to reach.

PCAs earn $10.96 per hour. The last wage increase was 12 cents, two years ago. MassHealth exclusively funds the PCA program. Sutton wants the state to treat the PCA program similar to a business. "Most companies at least give a cost of living increase. Not getting a raise as a PCA going on three years is a long time. "We're incredibly underpaid for what we do."

In 2006, a union was formally established to represent PCA's in their fight for benefits and wages. Increases will be determined by a collective bargaining agreement through a contract with 1199 SEIU. A PCA Quality Home Care Workforce Council was created to ensure long term care, wages and benefits, and maintains a website listing available PCAs. Consumers oversee the Workforce Council.

Sutton is wary of joining the union. "What if a PCA, working 24 hours per week, doesn't qualify for the health insurance benefits?" The union could be helpful if it allows her to qualify for benefits even though she only works part time, explains Sutton.

More than 13,000 people with disabilities and the elderly employ PCA's. Between 15,000 and 20,000 people are PCA's. The 33-year-old Sutton has worked at Jackson-Jordan for 10 years and as a PCA for nine years. She says the work is rewarding. "I don't look at this as work. Working with people with disabilities is my calling. They're (the boy's parents and siblings) my extended family."

LD/ADHD Task Force
Christiana Erekosima

The LD/ADHD Task Force meeting held on June 19, 2008 was well attended. There were a few new items on the agenda as well as ongoing events. The LD/ADHD Task Force goals and objectives where formalized and a Plan of Action will be developed.

The Director of the Consumer Involvement Program, Emeka Nwokeji, gave an overview on the success of the Consumer Conference. Emeka also thanked the attendees at the Conference, especially those that coordinated various workshops. Jenna Knight, Chairperson of the LD/ADHD task force, was complimented on her workshop at the Conference.

The Statewide Rehabilitation Council LD/ADHD Task Force web page was discussed; this web page will be completed in the near future.
For more information on the LD/ADHD Task Force, contact Jenna Knight.

The Artists with Disabilities Task Force
Lisa Weber

The Artists with Disabilities Task Force (AWDTF) is part of the State Rehabilitation Council (SRC) that encourages, supports, and provides resources for independence, self-support, and professional development in the art world. This program was developed to work in conjunction with the vocational counselors during the rehabilitation process.

AWDTF has met monthly in various locations determined by the members of the task force. A Western Region branch of AWDTF has recently been formed. Their first meeting was held on July 9, 2008 at the Massachusetts Rehabilitation Commission office in Springfield, MA. Members of the Western Region have the option of attending AWDTF meetings in the Boston area.

The initial AWDTF Western Region meeting held in Springfield was well attended. Emeka Nwokeji and Lucy Sacco presented details about AWDTF, what it is, and its mission. A mission statement for AWDTF was given to attendees. Members displayed art work that included hand made jewelry, folk art style paintings, and a hand woven scarf.

The AWDTF brochure and poster project were both discussed. Further discussion centered on the design and what information is to be included on the AWDTF brochure.

The next meeting of the AWDTF Western Region will be held August 12, 2008. For further information please contact: Lucy R. Sacco, Vice Chairperson Western Region @ 413-442-9629 or by e-mail Lsacco2@nycap.rr.com

Employment NOW May 16, 2008 Meeting
Joseph Panciotti

The meeting began with Anniko Lasko giving an overview of the 60 Summits project and the planning she is involved with in developing a summit in Massachusetts. This summit will bring together stakeholders to discuss return to work and stay at work initiatives and practices. Members were encouraged to review the website 60summits.org for more information. Some people volunteered their contact information to Anniko to follow-up with.
A review of the April 8, 2008 State as a Model Employer Forum was then discussed. Approximately 100 people attended and there was generally positive feedback. One member expressed frustration with the actions of some government officials in the process. Addressing the issue of self-employment was something that other members felt needed to be further addressed in the state's plan, particularly in reference to Independent Consumer Consultants (ICC's).

Stan Eichner, who is working closely with Dr. Jean McGuire at the Executive Office of Health and Human Services (EOHHS), gave an overview of what he hopes to achieve and follow-up on the issue of self employment. Stan has met with Paul Dietl of the Human Resources Department about making some lasting commitments to self employment. Components of Stan's plan surround issues of recruitment, retention, hiring, promotions, self-identification of having a disability, and reasonable accommodations. He also spoke about modeling based on the work of the federal government, such as the Client Assistance Program for assistive technology. Partnering with the Human Resources department and the Office on Disability (Myra Berloff, Executive Director) is essential to his plan.

One connection Stan would like to draw on the Employment NOW Coalition is the area of recruitment. He wants there to be more active outreach to organizations and people with disabilities and would like the group's help in identifying these resources. Linda Long Belill also mentioned that in regard to reasonable accommodation, flexible scheduling, and work hours must also be considered in addition to structural and equipment accommodations. Stan was pressed by the group to commit to a timeline for change, and, although he did not offer this, he did offer to attend future meetings to provide updates on progress.

Transition: Linda proposed the group endorse new legislation that will begin transition services starting at 14, rather than 15 as it currently is. The groups had a "town-meeting" style vote and the majority is in favor of lowering the age of transition services. Out of this exercise, there were some general questions about whether the Employment NOW Coalition should be making endorsements of any other line items in the state budget, particularly for more resources going toward enforcement of anti-discrimination legislation in employment.

CommonHealth: Bill announced that the CommonHealth program turns 20 years old. He proposed holding a public "party" to celebrate this milestone and to use it as an opportunity to highlight areas where improvement can still be made. Plans to coordinate the party got underway. Inviting members of the press was mentioned, as well as locations to hold the event (State House, Boston Common, etc.).

North Shore Transportation Forum
Lisa Weber

On July 17, 2008 a Forum on transportation issues was held at the Independent Living Center of the North Shore in Salem, MA. Twelve people were present, including representatives from Greater Lynn Senior Services and the Cape Ann Transportation Authority.

Mary Margaret Moore opened the forum with a description of the State Rehabilitation Council, and stated that one of our main goals is erasing barriers to transportation access, especially for individuals with disabilities, to get to and from work.

Consumers shared their personal stories. One consumer brought up the need to transfer to a second driver which increases the commute time. It was noted that when GLSS took over this consumer's case from Veteran's Taxi the situation improved. It was also pointed out that a consumer can save time by having a subscription to their ride if they're going to the same place every week but one cannot have a subscription if the ride includes a transfer.

Another concern was the problem with safety conditions at transfer points. Specifically discussed was the Oak Grove station in Malden, which has been known to have dangerous conditions during winter. Another problem mentioned was the difficulty for the average citizen to understand how RTAs are mapped out. Further complicating matters is that even when a consumer schedules a ride for a certain time, that ride is often too early or too late.

The MBTA has been working to improve accessibility options. All MBTA buses are supposed to be "low" so riders using wheelchairs can get on and off the bus. It has been suggested that all transportation companies need an ADA coordinator or be able to work with the Massachusetts Office on Disability. There are 15 RTAs across the Commonwealth.

Attendees of this forum stated the desire to rewrite the RTA jurisdictions to develop a more seamless transfer process when traveling to a location that requires a transfer. Many members of the forum where concerned that while public transportation is expanding, there are still many locations (including colleges within the North Shore and numerous New England cities and towns) that do not have any public transportation.
Commentary regarding "THE RIDE" focused on the consumer's need to realize that a person with a disability needs to demonstrate that he/she cannot use public transportation before being eligible for 'THE RIDE' services.

The Task Force stated that while it's wonderful that new initiatives are being researched (i.e., Job Access, Reverse Commute, and New Freedoms) consumers are still having difficulty getting to and from work. Specifically, there are many job opportunities along Route114 and Route 1 but individuals cannot get there as they do not have access to a personal vehicle or accessible public transportation.

At this time we are trying to break down the barriers between disability services and services for aging populations. We would like each agency to be assigned an ADA Coordinator who can assist with individualizing consumer problems and solutions.

Other areas that consumers would like improved are access to "THE RIDE" and easier website accessibility so consumers can plan trips using the Internet.

The recommendation was made to request funding from the MRC ($1000 to each IL Center) to use for emergency transportation funding for consumers since some cannot afford "THE RIDE".

The group stated they were happy to have this forum and would like another such forum with MBTA officials in the future.

An announcement from the Western Massachusetts Regional Advisory Consumer Council

The Western Massachusetts Regional Advisory Consumer Council is pleased to announce the appointment of their new officers of the Executive Committee of the Council. Chairperson, Amy Partelow, Holyoke, MA, Vice Chair Jenna Knight, Worcester, MA and Secretary, June Hailer, Pittsfield, MA.

Save the Date

State Rehabilitation Council (SRC) Quarterly Meeting
Date: Thursday, September 25, 2008
Time: 10:30 A.M. - 3:30 P.M.
Location: Massachusetts School of Law
500 Federal Street - Rm# 204
Andover, MA 01810

Massachusetts Department of Conservation and Recreation (DCR) fall Accessible Recreation Fair
Date: Saturday, September 27, 2008
Time: 10:00 A.M. - 3:00 P.M.
Location: Artesani Park
Brighton, MA

The State Rehabilitation Council (SRC) Artists with Disabilities Task Force Open Studios
Date: Saturday, November 15, 2008
Time: 12 noon-4 :00 P.M.
Location Boston Public Library, Allston Branch
300 North Harvard St, Allston, MA

Featured Artist

Billi Billingsley of Natick, Mass. is a fifty-two year old woman living with a disability. Art is a way for Billi to express her emotions and ideas and enables her to connect to other people. She began using art as a therapeutic tool to relieve anxiety and structure her time but her art has become so much more. Heart, passion and skills align for Billi in her artistic expression stronger than in her former career.

Billi's' work is in abstracts and usually done in mixed media. She is a member of the MRC Artists with Disabilities Task Force and her work has been shown at two open studio events. Billi is a college graduate and works as a volunteer at the local museum near her home town. Billi recently began studying abstract painting with Robert Collins. The many fresh ideas, technical knowledge and camaraderie of the art class have been invaluable to her. Art is the saving grace for Billi.

Elaine McHugh, Editor

Contributing Writers
Kobner Bonney
Christiana Erekosima
A.J. Kemal
Warren Magee
Joseph Panciotti
Girard Plante
Robert Sneirson
Dr. Susan Ventura

MRC Staff Editors

John Chappell, Jr., Deputy Commissioner
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 Massachusetts Rehabilitation Commission (MRC). 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.