Dedicated to empower consumers as a source for information and to provide a platform to make their needs known.

From the Editor's Desk
By Adriana Mallozzi

The torrential rain did not stop the 11,000 people who attended the New York Metro Abilities Expo held on April 21-23 at the New Jersey Convention and Expo Center in Edison, NJ. With over 150 companies exhibiting and twice as many sponsors as last year, the expo received rave reviews from both exhibitors and attendees, making it the best one yet in almost five years!

The Abilities Expo is a three day event held annually in various parts of the country. It connects people with disabilities, caregivers, family and friends, and those in the healthcare profession with service providers and each other. I have attended the event in the past, both in NJ and Boston, but preferred the former location. It seemed that the Boston event did not offer nearly as many vendors as its counterpart in NJ, and the attendance was low. Boston will not host this event for 2006 (usually held in September).

The Abilities Expo exhibits the latest products and services to enhance the lives of people with disabilities. Numerous vendors, hands-on equipment demonstrations and special events were part of the event. Comprehensive workshops ranging in topics from parent advocacy to career opportunities for students with disabilities were also offered for attendees to drop in on.

The workshops are designed to educate and inform the eclectic population that you would expect to find at an event such as this; offering certificates of participation for students, healthcare and education professionals. I attended a workshop on mouse alternatives for those of us who are unable to use a traditional computer mouse, while my parents sat in on a workshop discussing parent advocacy in regard to medical insurance.

In addition, the following services to help attendees enjoy the weekend were provided: complimentary wheelchair repair, loaner wheelchairs on a first come first serve basis, personal care attendants ready to meet various needs, and assistance for the hearing and visually impaired.

The special events that took place throughout the weekend included wheelchair ballroom dancing by Wheelchair DanceSport USA, quad rugby featuring the United Spinal Jets with Keith Cavill from the two time Sundance Film Festival winner and Oscar nominated film Murderball (a must see!), wheelchair basketball from Brookhaven Wheelchair Sports, and rap artists Professir X and Tap Waterz.

What would a disabilities expo be without a glimpse of the latest innovations? I tried out a few of the many products being showcased. For example, the Chunc chair (www.chunc.com) developed in England, the Chill-Out Chair by Freedom Concepts (www.freedomconcepts.com) based in Canada, and some much needed adaptive apparel by Cozy Coats of Vermont.

The Chunc chair was the most comfortable manual wheelchair I have ever sat in! It is actually designed for children and young adults, but a petite person like myself can also use it.

The Chill-Out Chair does exactly what the name implies. It allows one with little or no trunk control to "chill out" in a nice supportive comfy chair. Its bucket style seat prevents the user from sliding down/out - a problem I have when sitting on most couches and armchairs.

As most wheelchair users know, it's quite difficult finding clothing that is comfortable to wear and easy to put on and take off without compromising fashion and functionality, especially when it comes to outerwear.

The selection of adaptive apparel was slim this year, although Cozy Coats of Vermont had exactly what I needed; wonderfully crafted raincoats and raps. I ended up getting two raincoats; one lined for the cold Massachusetts winters, the other perfect for spring and summer showers. Another great vendor that offers adaptive clothing is AbleApparel (www.ableapparel.com), formerly known as AbleWear. I purchased my first piece of adaptive apparel from them about 5 years ago and couldn't be happier!

The Abilities Expo just keeps getting better with the passing of each year. It is an amazing experience, not only because you see the latest gadgets and equipment from all parts of the world, but you also meet some incredible individuals and make great connections. I encourage you to attend the Expo in the future and urge you to make waves to bring it back to Boston!

Check out www.abilitiesexpo.com for more info and upcoming dates.

Romney Signs Bill to Require Health Insurance for All

Summary by Girard Plante

www3.whdh.com/news/articles/local/BO17281/

Gov. Mitt Romney's vision to demand Massachusetts residents buy health insurance became reality when he signed the bill on April 12.

Legislators unanimously passed the bill, making Massachusetts a model state in bringing health care to the masses. The health care bill works for both the insured, who will be rewarded with a slight decrease in premiums, and low income citizens who can choose affordable plans and receive subsidies to assist them in the cost of coverage. Residents who can buy insurance but choose not to will be slapped with tax penalties.

The House endorsed the bill 154-2. The Senate backed it 37-0. "It's only fitting that Massachusetts would set forward and produce the most comprehensive, all-encompassing health care reform bill in the country," said House Speaker Salvatore DiMasi, D-Boston.

Federal reimbursements and state spending will cover much of the costs. The costs will go from about $316 million initially to $1 billion after three years. New monies projected at $125 million will be generated from the state's general fund in each of the three years.

New taxes are not expected, but businesses failing to offer insurance will pay a $295 fee per employee yearly. Massachusetts has 500,000 uninsured residents and the Romney version of expanded health care is unlike any other state in that it requires employers and residents to make contributions.

"The novelty of what's happened is that instead of saying 'let's do neither,' leaders are saying 'let's do both,'" said John McDonough of Health Care for All. "This will have a ripple effect across the country."

Low-income residents will benefit most. Single adults making $9,500 or less a year will get access to health coverage with no premiums or deductibles. Others who live close to 300 percent of the federal poverty level, about $48,000 for a family of three, are huge winners. According to the bill, they will get health coverage on a sliding scale with no deductibles. And most Massachusetts residents already insured could get a drop in their premiums. Still, others who can afford to buy health insurance but do not will be fined over $1,000 a year by the state.

Helping locate insurance is part of the bill in the manner of a health care "connector" that motivates private health insurers to offer affordable policies to small businesses and individuals. Romney referred to the legislation as "something historic, truly landmark, a once in a generation opportunity."

The state can protect the $385 million promised by the federal government over each of the next two years as long as the state shows proof it is reducing the number of uninsured individuals. The U.S. Department of Health and Human Services has warned it will hold back the money if the state fails to deliver an active plan by July 1.

PCA Rally

By Girard Plante

The State House in Boston rocked and rolled with over 200 consumers, advocates, members of the Service Employees International Union (SEIU) and state legislators at the PCA Workforce Action Council Rally on Wednesday, April 12.

The show of force by consumers is their support of a bill before the Massachusetts State Legislature that will improve pay and benefits to Personal Care Attendants (PCAs), who are paid $10.84 per hour, but do not have health insurance or various other benefits equal to PCAs and Certified Nurse Assistants working in hospitals and nursing homes.

Mike Fadel, Executive Vice President of SEIU Local 1199, was emcee of the rally. Fadel introduced four consumers who spoke of their plight to live free from fear of landing in an institution without the state's Personal Care Attendant Program.

Paul Spooner, a consumer who requires PCAs for daily care, and Executive Director of the MetroWest Center for Independent Living in Framingham, spoke poignantly about the importance of the State Legislature passing the bill. "The issue is important for who I am. I would not be where I am without PCAs. It's time for improvement because it will improve not only the quality of life for PCAs, but for me and other consumers."

The rally proved to be a rousing event that revealed pay and benefits for PCAs is needed for the 38-year-old program to continue to be a viable option to institutionalization. For example, PCAs earn $13 per hour at nursing homes and hospitals. Consumers claim a pay hike will allow them to retain their devoted PCAs and attract new ones.

Independence and choice are the buzzwords of the consumers who are in the battle lines of a public policy war that encompass their civil rights. And the PCA Program is one component that allows consumers to enjoy life the same as their able-bodied counterparts do.

Many consumers are employed and could never work without their PCAs. Of the thousands of people who are PCAs many are college students who need to supplement their expenses, while others work to support their families.

The sponsor of the bill and longtime supporter of disability rights, Sen. Steve Tolbert, gave a stirring speech about the work PCAs perform for the 12,000 people with disabilities who hire them. Rep. Lida Harkins is also a sponsor. After the rally consumers and advocates spoke to representatives and senators to seek support for the bill, which is stalled in the House Ways and Means Committee awaiting a vote.

Once the bill is voted on and moves out of Committee, it goes to the Senate for a floor vote. The legislative action process is slow and must be finished before the legislature ends its session in July. The title of the bill is the PCA Quality Home Care Workforce Council. It's identified in the Senate as S/139, and in the House as H/4246.

MBTA Agrees to Spend $310 Million on Accessibility

Summary by Girard Plante

Consumers can celebrate a $310 million class action victory against the MBTA that will create a wholly accessible transportation system.

Elevators and escalators are only two components that, under the arrangement established by the court, will displace inefficient lifts and add nearly 400 new buses along with creating safer and easier access over platforms of trolley cars. A $28 million overhaul of the MBTA's antiquated public address system will especially benefit people with visual and hearing impairments. The long overdue changes must be finished by 2011.

"For many years there have been a lot of promises by the MBTA to improve accessibility. We've developed a solution to get to the end in providing equal access for people with disabilities," said Bill Henning, Executive Director of the Boston Center Independent Living, the advocacy group that sued the MBTA.

Training for MBTA employees to properly meet the unique needs of persons with disabilities, as well as hiring a person to exclusively address accessibility are part of the settlement. A monitor with no ties to the MBTA will make unannounced investigations to ensure changes are being made and inform the judge who ruled in the settlement.

Plaintiffs that sued the MBTA do not get any monies. It took two years for the suit to be settled. Greater Boston Legal Services filed the class action suit that charged the MBTA with failing to ensure the safety of passengers with disabilities. MBTA General Manager Dan Grabauskas said several meetings were held by MBTA administrators to listen to the concerns and possible solutions by passengers with disabilities using its transit services.

"The process was really as important as the product," said Grabauskas. "This really is a blueprint on how we can take the MBTA to the next level."

Only MBTA subway and buses were part of the lawsuit. The massive public entity's paratransit service - The RIDE - was not part of the lawsuit, nor was the commuter rail.

Harvard Square Access Improvements

By Girard Plante

For those consumers who visit Cambridge, and Harvard Square in particular, your life is about to get easier. A massive multi-million dollar public use project transform the way you get around and the way you view Harvard Square began on May 22, 2006.

New sidewalks, streets, lighting, storm water systems, bicycle facilities, and various other enhancements including ease of movement, safety and recreation will bring access to Harvard Square into the 21st century. Even those old brick sidewalks that are not user friendly to people using wheelchairs will be replaced.

Streets that will be improved forevermore are JFK Street between Memorial Drive and Eliot Street; on Winthrop Street, between JFK and Eliot Streets will become a "shared street," where sidewalks and street surfaces are on the same level enhancing the pedestrian environment; Palmer Street; Church Street between Mass. Ave and Garden Street; and a landscaped island at Lampoon Plaza - the wide intersection of Mt. Auburn, Bow, and Linden Streets - will improve pedestrian safety, eliminate the large expanse of asphalt, and beautify the area.

The idea for all the improvements originated eight years ago by the property-owner commissioned study - Polishing the Trophy. Plans were polished and finalized by a committee of residents, business owners, institutional representatives and a Harvard student. Numerous community meetings were held to inform the public. Several people with disabilities, including myself, attended many meetings and asked questions and provided input. The committee always welcomed us graciously and has incorporated much of our input into the final plans for the construction.

The project will include many phases over a two-year construction period. Cost of the project is $6.8 million, which will be shared between the City of Cambridge and Harvard University. Work will be Monday-Friday,
7 a.m. to 5 p.m. Some work will occur on weekends and evenings.

People with disabilities who require special accommodations during construction should contact Rebecca Fuentes, Community Relations Manager, Cambridge Department of Public Works at 617-349-6948, or rfuentes@cambridgema.gov. Should an emergency arise after hours or on weekends, please call the 24-hour line at 617-349-4860.

Online Resources

Construction Updates/Project Overview:
www.cambridgema.gov/TheWorks/contents/constInfo.html

Design Planning Process:
www.cambridgema.gov/%7ECDD/et/infra/hsq/hsq.html

Public Art Component:
www.cambridgema.gov/CAC/public_progress_10.html

To sign up for e-mail updates, e-mail rfuentes@cambridgema.gov

Old Style Handicap Placards

By Todd Brown, Esq.

Finding a handicapped parking space when you have a medical condition that limits mobility can be a challenge, as our constituents well know. The Massachusetts Office on Disability and the Registry of Motor Vehicles are working together to assure that individuals with disablitiies have access to handicapped parking spaces.

As many of you know, the Registry of Motor Vehicles is the only agency authorized to issue Disabled Parking Placards and Plates to eligible individuals. The first placards were designed to lay flat on the dashboard and many of these old placards had no expiration date (i.e., valid for an "indefinite" period). As a result, it is not difficult for ineligible persons so inclined to misuse the old style placards.

In an effort to minimize the risk of misuse of disabled parking privileges, the Registry of Motor Vehicles redesigned the Disabled Parking Placard several years ago and introduced the new "Hanging-Style" placard, which contains the holder's photo and a specific expiration date. Although the RMV undertook a major effort to contact all holders of the old style placards, some folks never received notice that the placards were changing and some never received the request to turn in the old style dashboard placard. As a result, some individuals with disablilities are still using the old placards that are placed on the dashboard. These old dashboard style placards will no longer be valid after December 31, 2006.

The Medical Affairs Branch of the RMV can be contacted at
617-351-9222 or via snail mail:
Medical Affairs
P.O. Box 55889
Boston, MA 02205

The RMV is committed to making this transition as easy as possible and the Medical Affairs Branch staff is ready to help in any way they can.

A Look at Asian People with Disabilities and Their Families

By Hang Lee

This article is based on the author's personal experience growing up in Chinatown.

About twenty-five years ago, my family and I lived in public housing in Boston's Chinatown. I would always be out and about, whether it was going to the local variety store to buy candy and drinks or helping my Mom with the laundry at the laundromat downstairs. Outside the laundromat, I noticed what seemed to be a young man standing with an elderly man (presumably his father). This young man appeared somewhat as an anachronism; he wore an outfit similar to those worn by actors in martial arts films depicting early twentieth century bucolic China. This person would always have a shaved head, appeared to be non-verbal and always had his right index finger on his misaligned teeth.

One day, I asked my Mom who the young man was. My Mom explained to me, "That person is a woman with a mental disability, and the elderly man who accompanies her is her father. The reason why the woman has a shaved head is because the father wants to disguise her as a man so predatory men won't take advantage of her mental retardation."

This was my first experience with one who was Chinese and had a significant disability. Of course I have met others since then, many sharing the same cultural beliefs such as shame, isolation, being over-protective and a strong sense of duty to care for family members with a disability. I will discuss my personal views of Asians with disabilities based on the various people I have met and events I have witnessed throughout the years.

Shame plays a prominent role in Asian cultures, especially when it relates to family and how they are perceived by others. Teenage pregnancy and marital difficulties are two examples of what are believed to bring shame to a family. After all, nobody wants their teenage daughter to be pregnant, or, in another extreme, some Chinese families prohibit inter-racial dating. In my view, shame acts like a traditional check with the families as well as Chinese society. Because of the traditional villages that occupy rural China, "not having a face" among village members is especially strong and discouraged. No, nobody wants to be the focal point of gossip and ridicule.

For families with members who have disabilities in China, it can be a double-edged sword. On the one hand they can get support from the villagers and extended family members, while on the other hand, it is viewed as a curse or bad karma within familial lines. This is also seen in Chinese families in America, when there are members close by and tight-knit. It is these ties that are the most vulnerable and prone to being severed. Due to the perception of shame, many young couples are isolated and are forced to fend for themselves. This helps them develop survival skills, but needless to say, it is always better to have a known support network around.

In addition, shame is also connected with familial isolation and to a certain extent, over-protection of family members with disabilities. The latter is seen as universal among mothers in many cultures, but it is more so in traditional families who have children with disabilities. Said children are kept at home under supervision never to see the light of day or are closely watched when they go out with their families. Shame plays a significant role in this because many Chinese families and care-takers are ridiculed by other community members.

Many Chinese families may have medical needs, especially those with disabled family members, which require outside supports. Obviously, these supports are always available, yet one of several things must occur before one of Asian decent will take advantage of such services; the family has to open up and admit the need for assistance, a life-altering experience, like the death of a primary care-taker or that person is no longer able to provide care for them and no other family member wants to assume the responsibility. When ostracizing is prevalent within an extended family and community, the member is usually denied medical care and psycho-social needs. Thus, the dictum "out of sight, out of mind" still exists within Chinese families in the United States and Canada.

Another reason why you see very few Chinese people with disabilities walking the streets of Boston is the fear that the disabled family member might get hurt or ridiculed by people outside. This leads to isolation, preventing the person from getting proper medical care and being involved in activities that allow one to learn the necessary social skills to obtain a job or friendships.

My cousin who lives in Los Angeles and has a substance-induced mental illness is a perfect example of how detrimental isolation and over-protectiveness is. My parents went to visit recently and informed me that my cousin sat on the couch all day, seemingly doing nothing. My mom asked me if there are places where he can go to get services. The answer is obviously yes. But rather than seeing their son get services, such as being admitted into a drug rehab, and living a productive life with friends, my aunt and uncle decided to hide the problem rather than face it because they feel ashamed to be seen with him.

Families often don't get the information they need to make an informed choice about the medical and psycho-social needs of their members with disabilities. They wait until an emergency arises, or as with many cases involving Chinese families, the caretaker becomes too old to continue taking on the responsibility as caregiver. Furthermore, the adult child is maladjusted due to under-developed social skills as a result of little or no peer interaction when the child was younger. There may also be intellectual deficits when, out of shame, the person who has the capacity to succeed scholastically is not given the opportunity to do so. In my opinion, the latter scenario is the worst; nobody benefits (especially the person with a disability).

Lastly, the notion of family obligation within Chinese families is very strong, specifically when it is concerning the weak, fragile and elderly. The concept is passed down from one generation to another and is learned and strongly encouraged by parents and grandparents. It is also the key to holding an extended family together, as these structures have ways of strengthening over time. This is only true if extended family exists and the members within that network get along extremely well.

However, many Chinese families in the United States do not follow this ideal. In fact, there is a growing percentage of families who only have one child. In many cases, the child is born with a disability and the primary responsibility of care-taking falls solely on the parents. Therefore, the parents worry about who will take care of their children when they are no longer able to. They don't want an organization or a legal guardian to assume the responsibilities of the adult child's welfare. Moreover, the welfare of the child is a cultural obligation, a task that many Chinese parents do not even dare to question.

This is why professionals in the human service and rehabilitation fields do not experience an influx of Chinese consumers with disabilities. I believe many of them are home-bound with their parents or other domestic caretaker.

Family structures vary culturally, and the rate of assimilation also plays an important role regarding the knowledge of services for families with people with disabilities. By presenting a glimpse of several variables in a family-oriented culture, that is also one of the rapidly growing immigrant groups in the United States, I strongly encourage more research be done on Chinese people with disabilities.

Lastly, I leave you with this personal anecdote. One summer day, my two siblings, Mom and I were sitting on the stairs of our apartment building. A nurse walked by and spoke to my Mom, offering some information on pediatric services at Boston Hospital, thus opening the doors of medical opportunities for us; proof that outreach services are very important for un-served populations, especially with the growing influx of Chinese immigrants to the Boston and Quincy areas.

Changing Your Mind: Limiting Beliefs

By Judith Poole, MA

Successful attainment of a vocational or independent living goal requires a change of mind. Yet we are all subject to hidden limiting beliefs that can run interference with attaining our heart's desires.

Just what is meant by "limiting belief"? A thought repeated often enough becomes a belief. Beliefs are habits that act like programs that were installed and run on our central processing unit (the subconscious mind) usually without our conscious knowledge. A limiting belief tells us that we will never do, have or be what we most want to accomplish.

How do these limiting beliefs get there? Someone might have said something that we took on as being true even if it wasn't. It might have been said in our presence and not meant for us. It might have been said to us in anger or frustration. It might have been said casually, or as a joke, but we took it seriously and it became part of our identity.

Advertising provides a great example of deliberate attempts to create such programs. Those who work for the advertising industry are paid to make up clever dramatizations that create desire for certain products or belief that you need them.

We are wired in a way that makes it hard to change these habits of thought. An intricate mechanism for dealing with stress involves an acupuncture meridian called Triple Warmer that works with the adrenal gland. It sees its job as keeping us alive. From its point of view, you are alive now, so it resists letting you change anything. Rather than understanding that in change lies the potential for improvement, it sees any change as a threat.

That can make it difficult to succeed at making changes, including changing beliefs about one's capacity for success. The good news is that there are many interventions that are easy to learn. Now, as soon as you become aware of a thought that stops you, you can instantly direct the subconscious mind to change that belief. The technique, called "Be Set Free Fast," developed by Larry Nims, PhD, is one of focusing intention and attention.

The more difficult part of the practice is to listen for thoughts that are stoppers, and staying aware enough to change your mind whenever it tells you nonsense that isn't even true. One good clue: listen for words like "always" and "never." The rest of the sentence is not likely to be true. It is too general, too global in scope.

Now, when I hear myself thinking or saying that I "always" experience something a certain way, I try to add "so far, but that's changing." If I notice the word "never" has crept into my thoughts, as in "I'll never get this right", I add "yet." This sounds simple and maybe even silly, but it begins to shift a habit of limiting thoughts, and opens up a world of possibility.

Voices Rising Women's Chorus: Committed to Access

By Lisa Weber

As a staff member of MRC who also happens to be a person with a mild brain injury, I feel very blessed to have the opportunity to sing with a wonderful women's chorus called Voices Rising. This group has shown true commitment to providing access for people with disabilities. All of our rehearsal sites and concert venues are wheelchair accessible. In addition, this group has committed to providing American Sign Language interpreters for our Deaf audience members. The members of Voices Rising have been incredibly understanding of my situation and have made me feel welcome and comfortable (e.g., using a "buddy system" to help me find my way to and around rehearsal and performance sites, something that has become incredibly difficult to do on my own since my injury last year).

Part of my staff role at MRC includes working with the Artists with Disabilities Task Force, a task force of the State Rehabilitation Council. This part of my job strikes a particularly personal note with me due to my own experience. Just prior to the car accident that caused my injury last year, I was finishing a certificate program in American Sign Language Interpreting. My injury has since made the processing of visual information a lot harder, and the part-time interpreting I was doing a lot more strenuous.

I have since dedicated a good deal more time and energy into my singing which has been a hobby of mine for several years. My involvement in the performing arts has been a godsend in terms of both my mental and physical health. I am very fortunate to be able to connect the professional and personal aspects of my life in such a wonderful way and I invite all of you to come see our chorus perform.

For more information about Voices Rising visit www.voicesrising.org. For information about the Artists with Disabilities Task Force please call 617-204-3638.

Boston "Pride" Makes Efforts to Provide Access

By Lisa Weber

Beginning on June 3rd and ending on June 12th, Boston Pride 2006 was a nine-day celebration of the GLBT (gay, lesbian, bisexual, transgender) community. An annual tradition across the country, Pride celebrations consist of a variety of events. Boston Pride 2006 made efforts to provide access for GLBT persons with disabilities and their allies. On Friday June 9th, the march for lesbian rights was ASL-interpreted and wheelchair accessible, as was the parade on Saturday, June 10th. One member of the Deaf GLBT community expressed appreciation for the efforts to provide access, and also a desire for future Pride celebrations to further their outreach and advertising efforts to reach more members of the Deaf and disability communities. We hope that the organizers of Pride celebrations continue to provide and increase access for these communities.

Renowned Healthcare Strategist Named to Head Connector

On May 25, the Romney Administration announced the appointment of the executive director of the independent authority charged with facilitating the purchase of affordable healthcare insurance products as well as the Governor's three appointments to the authority's board.

Administration and Finance Secretary Thomas Trimarco, who under the law makes the appointment, said today that Jon M. Kingsdale, a 25-year health insurance strategist in the Massachusetts market, has accepted his offer to head the Commonwealth Health Insurance Connector Authority.

"Jon Kingsdale is an experienced health insurance professional whose knowledge and strategic insights will be critical as we work to implement healthcare reform in Massachusetts," said Trimarco. "He has a solid understanding of Medicaid law and healthcare finance, and he has the passion, the skills and the background to lead the start-up effort for this historic undertaking."

Kingsdale most recently served as senior vice president for policy development at Tufts Associated Health Plans, a not-for-profit health insurer. He holds a Ph.D. in economic history from the University of Michigan and has also been on the faculty of Harvard and Boston University Schools of Public Health and Tufts University School of Medicine.

"I am honored to be asked to help implement the bold, innovative strategy forged by Governor Romney, President Travaglini and Speaker DiMasi," said Kingsdale. "To cover the uninsured, the legislation envisions a new path to affordable, high quality health insurance through the promising innovation known as the Connector. Making it a reality will require further innovation, perseverance and compromise, and I am passionately committed to working with Tom Trimarco, Tim Murphy and the rest of the Connector's diverse board of directors to create a common path to our common goal."

The Connector will define what policies can be considered "affordable" and serve as the critical facilitator for the purchase of health insurance by small businesses, non-working individuals and part-time employees. The Connector will provide technical assistance to small businesses to encourage the purchase of health insurance on a pre-tax basis by their employees, which can result in a 10 to 40 percent effective savings. It will also determine what level of premium assistance the approximately 200,000 uninsured residents with incomes less than 300 percent of the federal poverty level will receive.

"Jon's appointment as executive director is an early and important milestone for the successful implementation of the landmark healthcare reform law," said Health and Human Services Secretary Timothy Murphy. "I look forward to working with him in order to achieve the many objectives of the Connector. His breadth of experience and commitment to public service will serve him well in this new and exciting position."

The three members to be appointed by the Governor to serve on the Connector's board are actuary Bruce Butler, health economist Jonathan Gruber and Rick Lord, CEO of Associated Industries of Massachusetts (AIM), who will represent the interests of small business. Five thousand of AIM's 7,500 members are small businesses. These appointees will join five ex-officio members spelled out in the healthcare reform legislation as well as three recently appointed by the attorney general.

U.S. House Passes Budget Resolution

In the pre-dawn hours of the morning, on May 18, 2006, the U.S. House passed, at long last, its $2.8 trillion fiscal year (FY) 2007 Budget Resolution. Many lobbyists in Washington, D.C. were surprised that the House moved on a budget plan at such a late date on the Congressional calendar. An initial analysis of the House Budget Resolution shows cuts to domestic or "discretionary" spending programs by $10.3 billion in FY 2007, and by $167 billion over five years. Entitlement or mandatory programs are reduced by $5.1 billion over five years. It appears that the House Budget Resolution is more restrictive than the Senate Budget Resolution, as it allows for $11.9 billion less funding for domestic discretionary programs than the Senate plan.

2006 Housing Vouchers Increased

Nearly $14 billion will be available for funding housing vouchers in 2006, an increase of 3.5% over 2005. According to the Center on Budget and Policy Priorities (CBPP), 95% of the housing authorities will receive more voucher funding in 2006 than they received in 2005.

According to CBPP, FY 06 voucher funding significantly restores "more than half of vouchers lost in 2004 - 2005," estimating that 70% of the housing authorities will "increase leasing by 98,000 families compared to 2005."

CBPP warns that housing authorities should use the allocated voucher funds or face loss of future funds, especially because "PHAs that do not use available funds will lose out in 2007."

Advocates should meet with the Executive Directors of your local Housing Authorities to encourage them to use some of these vouchers for persons with disabilities. Remember, many of these Housing Authorities received Mainstream Vouchers and Fair Share Vouchers in the past that were supposed to be used for persons with disabilities, including awarding them to disabled persons when the vouchers turned over. If your Housing Authority has not properly used them for disabled persons, make them use the FY 2006 vouchers to correct their prior failures. Even if they did properly use them, what does your Housing Authority's Administrative Plan say regarding persons with disabilities?

If you want to know the increased number of vouchers for your specific local housing authority, see www.cbpp.org/5-23-06housingwebchat.htm.

Special thanks to the Center on Budget and Policy Priorities, and to Steve Gold, The Disability Odyssey continues.

NACDD Appropriations and Reauthorization Teams Hold First Meetings

The National Association of Councils on Developmental Disabilities (NACDD) Appropriations Working Group held its first meeting on Monday, May 15, 2006, and the NACDD Reauthorization Working Group held its first meeting on Thursday, May 18, 2006. These groups are offshoots of the NACDD Public Policy Team and are newly formed to promote the Association's 2006 legislative priorities of increasing Council funding in FY 2007 under the DD Act and preparing for DD Act Reauthorization in 2007. Bill Lynch (Oregon Council) has agreed to be the Convener of the Appropriations Working Group. Jane Rhys (Kansas Council) and Eric Jacobson (Georgia Council) are the Co-Conveners of the Reauthorization Working Group.

The Working Groups will be reporting on their activities at the monthly NACDD Public Policy Team meetings - held every third Tuesday of the month at 4:00 p.m. (Eastern). Councils are encouraged to participate on both Working Groups.

National Council on Disability Statement: Voluntary Voting System Guidelines

Consistent with its legislative mandate as an independent federal agency, the National Council on Disability (NCD) provides advice to the President and Congress by making recommendations on how to enhance the quality of life for all Americans with disabilities and their families. In Inclusive Federal Election Reform, NCD made recommendations to Congress and the President on how to improve the accessibility of voting systems. This NCD statement shows alignment of those recommendations with the current efforts of the U.S. Election Assistance Commission (EAC), established through the Help America Vote Act (HAVA) of 2002, to establish guidelines for accessible voting systems. As more fully described below, NCD calls on the EAC to make voting systems more accessible to people with disabilities by requiring privacy protections for paper ballots, comprehensible audio for electronic voting machines, and paper ballots that are accessible to voters with poor vision.

Field-Test for ASL Version of the SASSI

Become involved in the field-testing of an ASL version of the screening (SASSI-ASL) designed to be used exclusively by deaf, deafened, or hard of hearing people. It contains 42 "yes/no" questions, is on a CD-ROM and is in ASL.

The SASSI is a commonly used tool in the field of treating substance abuse. The Substance Abuse Subtle Screening Inventory (SASSI) is, according to the SASSI Institute, "a brief and easily administered psychological screening measure that helps identify individuals who have a high probability of having a substance use disorder." A project is currently underway, funded by the National Institute on Disability and Rehabilitation Research, to evaluate this screening tool for use by vocational rehabilitation agencies. However, the result may not be valid for use by the deaf, because of linguistic and cultural incompatibility. Up until now, there was no such tool designed specifically to be used by the deaf community.

Participants will be paid $10 for their involvement. The ASL-SASSI is designed to be used in the future with vocational rehabilitation counselors who may suspect a client has a problem with drugs and/or alcohol.

For purposes of this field study, you don't have to have a problem with drugs or alcohol. The objective is to find out if the ASL is clear and that the person understands the questions.

The project is a joint effort with the Research and Training Center on Vocational Rehabilitation, Employment and Disability out of Wright State University, and is funded by the National Institute on Disability and Rehabilitation Research.

If you or someone you know would be willing to help with this project, please contact Dr. Guthmann at dguthmann@aol.com.

Attention Underinsured

Do you have health insurance but still have a pile of bills? Then you have an IMPORTANT story to tell!

Health Care For All is working with The Access Project on a study to learn more about the causes and effects of underinsurance. Your story can help them advocate for changes in policy to protect you and your family.

They want to learn more about the gaps in your coverage that resulted in medical debt, as well as how the debt affected your health and your overall financial security.

Although they can't pay you, your participation only requires a 10-minute screening phone call and a 45-minute phone interview.

To participate, please contact Young Joo at:

email: yjoo@hcfama.org
phone: 617-275-2921
web: www.hcfama.org

Noteworthy Items

Beginning 9/1 - Cycling @ Norwottuck Rail Trail in Hadley from 12:00 pm-5:00 pm every Friday. For more information and to register, call Adapted Sport and Rec @ 413-788-9695 or All Out Adventures @ 413-527-8980.

9/2 - Women with disabilities support group 1:00 pm-3:00 pm @ Brigham House in Newton. For more information contact Donna Suskawicz @ 617-277-5131.

9/11-9/13 - 2006 Independent Living Conference: Community First, ILC's Making it Happen! @ the Best Western Royal Plaza Hotel in Marlborough. Sponsored by the Statewide Independent Living Council and funded by the Massachusetts Rehabilitation Commission. For more information call 508-620-7452.

9/13-9/15 - Aspire, Achieve, Empower: First National Conference on Mentoring for Youth with Disabilities. Visit www.regonline.com/pyd for more information and to register. Registration ends August 15.

9/13 -Home Care Advisory Committee is scheduled from 12:30-2:30 at 27 Wormwood St. Boston, MA. For more information contact Betty Maher 617-204-3631

9/28- SRC Meeting 10:30 am-4:00 pm, MetroWest region.
Location will be announced at least 3 weeks before scheduled date. For more information call 617-204-3665.

10/3 - Massachusetts Law Reform Institute, Basic Benefits Training: Access to Health Care Programs from
9:00 am-4:00 pm. For more information and to pre-register, contact Gale Helpern @ 617-357-0700 ext. 308 or ghelpern@mlri.org.

10/7- Women with disabilities support group from
1:00 pm-3:00 pm @ Brigham House in Newton on the first Saturday of every month. For more information contact
Donna Suskawicz @ 617-277-5131.

10/19 -SRC Strategic Planning Committee meeting is from 1:00 p.m. to 3:00 p.m. at the Brockton Main Library 304 Main Street Brockton, MA 02301 For more information contact Consumer Involvement at 617-204-3665

10/17 - Massachusetts Law Reform Institute, Basic Benefits Training: Emergency Assistance/Shelter for Homeless Families from 9:00 am-1:00 pm. For more information and to pre-register, contact Gale Helpern @ 617-357-0700 ext. 308 or ghelpern@mlri.org.

10/27- Massachusetts Law Reform Institute, Basic Benefits Training: Food Stamps from 9:00 am-12:15 pm and Supports for Working Families from 1:00 am-4:00 pm. For more information and to pre-register, contact Gale Helpern @
617-357-0700 ext. 308 or ghelpern@mlri.org.

11/4 - Women with disabilities support group from 1:00 pm-3:00 pm @ Brigham House in Newton. For more information contact Donna Suskawicz @ 617-277-5131.

11/6 - Massachusetts Law Reform Institute, Basic Benefits Training: SSI and SSDI from 9:00 am-4:00 pm. For more information and to pre-register, contact Gale Helpern @
617-357-0700 ext. 308 or ghelpern@mlri.org.

11/16 - Massachusetts Law Reform Institute, Basic Benefits Trainings: TAFDC overview & highlight from 9:00 am-4:00 pm. For more information and to pre-register, contact Gale Helpern @ 617-357-0700 ext. 308 or ghelpern@mlri.org.

11/18 - Massachusetts Council of Churches' (MCC) annual Ecumenical Disabilities Network Conference from
10:00 am-3:00 pm @ Wellesley Hills Congregational Church. Lunch will be provided. The topic will be Pandemic Flu Preparedness Among Special Populations. For more information call 617-523-2771.

11/30-12/1- 26th Annual Consumer Conference at the Quincy Marriott Hotel. For more information and to register call
617-204-3665.

Please Note: You must register by Monday, November 6, 2006 to attend the Conference.

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 publication of the MRC StateRehabilitation Council
William McCarriston, Jr., Chairperson
Elmer C. Bartels, Commissioner, MRC

A quarterly publication of the Massachusetts Rehabilitation Commission Consumer Involvement Program.
For further information contact Emeka Nwokeji, Director of Consumer Involvement Programs at 617-204-3851

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.