From the Editor’s Desk
Elaine McHugh

Welcome to the Winter Edition of the Consumer’s Voice. We are mailing the Consumer’s Voice along with the Massachusetts Rehabilitation Commission Artists Beyond Challenges 2013 Calendar.
 
This popular calendar has beautiful artwork for each month.  If you are interested in purchasing artwork or would like to become involved with Artists Beyond Challenges please contact Lisa Weber at 617-204-3638 or via email at lisa.weber@massmail.state.ma.us.

Do you dream of visiting the country your parents or grandparents were born in?  Well, that was Larry Espling's dream and his dream came true.  In this issue, Larry writes about his trip to Sweden, the land of his father’s birth. 

“I never thought this would happen to me.”  How many of us have said that?  Bob Barker said this and then began to turn everything around.  Read his article about the things that can happen to you and surviving it all.

Donna DeGugliamo had many unexplained health issues until she found a Lyme literate doctor.  She shares her health concerns and eventual diagnosis in her article, “There may be a silent epidemic in America causing disabilities.”

Dual Eligibles.  Girard Plante writes about being a dual eligible and concerns about Integrated Care Organizations.  Will people loose choice and their autonomy in the quest to provide better care at a lower cost?  Girard’s article will encourage all to become informed health care consumers.

We are always looking for articles for the Consumer’s Voice and images for the featured artist section.  If you are interested in writing for the Consumer’s Voice or you are an artist with an image to share please contact me by email at consumer.involvement@mrc.state.ma.us or by phone 617-204-3664.

Also, we are still encouraging our readers to go green and receive the Consumer’s Voice electronically.  If you are interested in going paperless please contact us at the above email address.

 

2012 Manuel Carballo Award:  Project IMPACT

In every survey taken in the past 25 years, when asked to identify barriers to employment for individuals with disabilities, one of the top reasons indentified is “fear of losing public benefits, including health coverage.” Project IMPACT provides benefit planning education and assistance services to consumers receiving SSI/DI who are looking to go to work in the following counties: Barnstable, Bristol, Dukes, Nantucket, Plymouth, Suffolk, Norfolk, and Essex.  Virtually all the participants in Project IMPACT have a severe disability.  Therefore, in addition to becoming proficient in all public benefits, it is critical the staff have the ability to deliver the information in such a way that the individual, and in some cases their family and those offering support, can understand the facts and issues in order to make an informed choice.

Since 2006, the staff of Project IMPACT has provided benefit planning services to more than 10,000 individuals with disabilities and written more than 4,000 individualized benefit plans (25% of those individuals who had plans developed have become employed).   Project IMPACT has been cited by the Social Security Administration as the number one program in the country.  At that time, the staff of Project IMPACT was responsible for almost 11% of all benefit plans written in the United States.

Team members include: Joseph Reale, Emmy Diaz, Ingrid Farelli, Herminio Miranda, Linda Muse, Marilyn Reale, Kimberly Thacker, and Marit Young.

 

Partners for Youth with Disabilities (PYD) Mentor Match Program
Match Profile

Jessica* applied to PYD’s Mentor Match program in 2008 when she was 11 years old. Jess has Cerebral Palsy and uses a wheelchair, and at the time, she was living with her mother and one-year-old sister in a small two-bedroom apartment in downtown Boston. Jess was sharing a bedroom with her sister, and was limited in mobility because her wheelchair needed to be carried down a flight of stairs in order for her to leave the house.

Jessica was in need of a mentor who could make her feel special and who would be an open ear as she became a young woman. PYD matched her with Lisa an energetic, compassionate junior at Boston University and it quickly became evident that the two of them were made for each other.

The joy Jess and Lisa bring into one another’s lives is crystal clear to all those around them. When asked about Jess and Lisa’s relationship, Jess’ mother emphatically answered, “They are the PERFECT match. There is no one better than Lisa for Jess. Lisa is like one of our family members.” Jess recently echoed this enthusiasm in a match check-in when she exclaimed, “We’ve been spending a lot of time together and our match is great! We go to the movies, go out shopping, go to Red Sox and Celtics games, walks in the park and go out to restaurants. Right now Lisa is helping me to figure out what I want to do for my 16th birthday party.”

When asked about her mentoring relationship Lisa recalls: “I went into this thinking I would be changing the life of this little girl, but she in fact has changed mine. When I'm feeling stressed out or blue about things that are nominal compared to the obstacles that she has to deal with, Jess reminds me about what's really important and always cheers me up.”

Over the past four years that they have been matched, Lisa has seen Jess through numerous hurdles: figuring out her relationship with her dad; dealing with her disability at school; moving into a larger apartment with her mom and sister; decorating her new, bright bedroom; and now, graduating from Middle School. And throughout it all, Lisa has been blown away by Jess’ indomitable spirit. “Jess is the happiest, most kind-spirited person I've ever met. She babysits her little sister without complaining so her mom can work to pay the bills. She helps out around the house.  She doesn't ask for anything. She's never had a real birthday party before and Santa doesn't come to her house, but she always talks about kids that are “less fortunate” than her.

In response to being told Jess was being nominated for the Fenway pre-game activities, Lisa expressed: “Jess is truly an inspiration and she deserves an opportunity like this more than anyone I know. We participated in Mentoring Night at Fenway Park last year, and it was literally the highlight of her year. Taking that a step further would mean the world to her.”

Lisa and Jess were chosen to shout “Play Ball!” at this year’s Mentoring Night at Fenway, and they both had giant smiles plastered to their faces through the entire night.

*The youth’s name in this story has been changed for privacy.

 

Massachusetts Youth Leadership Forum
MaryEllen MacRae

Once again, the MRC was able to provide federal stimulus funding to ensure another year of the Massachusetts Youth Leadership Forum (YLF).  The YLF 2012 was an organized effort with Easter Seals as the lead organizing a successful collaboration among various agencies which include: Boston Center for Independent Living (BCIL), Center for Human Development (CHD), Partners for Youth with Disabilities, Empowering People for Inclusive Communities (EPIC), Massachusetts Developmental Disability Council (MDDC), Metro West Center for Independent Living (MWCIL) and Independence Associates (IA).
This is the second time I’ve been asked to write about this amazing event.  It’s the third year running at this capacity and I have to say it just keeps getting better and better!  With such a devoted collaborative of people, a need within our young community, and the experience we gain every year, it’s no wonder it’s so successful!   The word is out there so we’ve got a lot of competition for the limited spots.  We choose approximately 15 peer leaders and 35-40 delegates through an application process that includes letters of reference and professional interviews.  The collaborative works extra hard to be sure this event is cross-disability and different areas of the Commonwealth are well represented. 

Then comes the four-day event.  The first full day is strictly for peer leaders to receive some intensive training so they are fully prepared for the delegates arriving the next morning.  On the morning the delegates arrive, it’s a wild scene of excitement, nerves and worried parents.  One of the most wonderful organic successes that unfold is the sheer fact that this may be the very first time a young adult is sleeping overnight without their parents/guardians.  This alone, is one of the most empowering tasks that lead to independence for anyone, never mind the rest of the three days of leadership workshops, powerhouse speakers, and personal growth!

The workshops range from employment, advocacy, legislation, assistive technology and disability history.  The delegates were also expected to complete their own personal leadership plans over the three-day period; these plans identify their own goals and how to achieve them. 

Along with the workshops, there’s also a whole lot of fun going on!  We were lucky enough to have Elmer Bartels and Chris Palames introduce the film “Lives Worth Living” and to stick around for some comments and feedback afterward.  Little did we realize how much the young adults would respond to this movie!  Once the film was over, the peer leaders and delegates alike shared stories of empowerment, sadness, camaraderie, but most of the gratitude went to our guests for the evening, for pioneering the way for them.  It was one of the most memorable evenings of pure emotion and togetherness that I was lucky enough to witness.  We also had another successful mentor luncheon where we invited professionals with disabilities to lunch with the peer leaders and delegates to discuss topics of employment and roads to get there.  It really allows for some private time for the young adults to benefit from learning how to obtain a certain profession.  And last but certainly not least, the dance!  With food and drinks, everyone from the delegates to the staff captains had a blast!

To try and sum up the power and magnitude of the Youth Leadership Forum, I’ll end with the quote by John Quincy Adams.  This quote was chosen by the peer leaders to be put onto the shirts worn by everyone who attended.

“If your actions inspire others to dream more, learn more, do more and become more, you are a leader.”

 

Richard Mangino One Year Later

Richard Mangino was featured in the Consumer’s Voice last year after his successful double hand transplant.  Many of you know Richard through his artwork, most recently displayed in the 2012 Annual Calendar.

Richard is a 65-year-old man who lost his lower arms and legs to a bloodstream infection in 2002.  He received two new hands during a twelve hour transplant operation at Brigham and Women’s Hospital last year. 

Richard’s successful transplant of both hands and subsequent rehabilitation has been nothing short of miraculous.

Since that time, Richard has been going to physical therapy and following up with his medical appointments.  He has seen ongoing improvement with his daily living skills.  He is still taking medication for nerve pain.  Most of all, he has not had any signs of rejection in his new hands.

This summer, Richard experienced the joy of playing ball with his grandchildren.  Swimming the length of the in-ground pool in his backyard has been a great milestone.  He marvels at having the use of his new hands.
Richard became a prolific artist after his illness.  His art work can be viewed at richardmanginoartist.com.  Music is another area in which Richard excelled, he re-taught himself to play his guitar after his original illness.  He is still writing music, and exploring the arts.

We look forward to seeing more of his artwork and his continued success.

Sources:
Boston Globe
Consumer’s Voice

 

ReWalk/Exoskeleton

After an accident left Israeli entrepreneur Amit Goffer a quadriplegic, he decided to develop a system that allows wheelchair users to walk, climb stairs and see eye to eye with their family and co-workers.

 “Exoskeleton” makes most people think of a Halloween costume or a strange Science Fiction movie.  In reality it is a quasi-robotic ambulation system that allows wheelchair users to stand, walk and climb stairs. 

ReWalk is an ambulation system developed by ARGO Medical Technologies. The wearable upright mobility system is specially designed for individuals with lower-limb disabilities. By restoring upright mobility, the developers say, ReWalk delivers benefits on the health, economic, and societal levels.  This system helps users regain their dignity by being able to stand eye to eye with their peers.

“What we want to do is have the person wake up in the morning, put on clothes, put on the ReWalk, go to work and go throughout the day, wearing it,” states Dr. Amit Goffer, PhD, founder and director of Argo, and ReWalk’s developer.

About 60 people worldwide have used the ReWalk system.  In Europe the ReWalk system is approved for home use.  In the United States, the Food and Drug Administration has not approved home use.  Most people in the U.S. using the ReWalk system are doing so in a hospital/rehabilitation setting.

The ReWalk system sells for about $75,000 dollars in Europe where it is approved for home use.  Argo, the company that Amit Goffer founded, is considering leases for people whose insurance policies won’t cover the cost.

Mike Ferriter, the co-founder of the Boston Chapter of the National Spinal Cord Injury Association states, “The ReWalk will have to be refined and the price brought down.”  Comparing the cost of the ReWalk to the cost of care, it is cheaper to purchase this equipment.”

Sources:
News.com.au
Boston Herald

 

My trip to Sweden June 2012
Larry Espling

In June of this year, my friend Allen and I went to Sweden for a two-week trip. This was a goal I had for many years, to see the land where my father was born. 

We flew from Boston to Iceland and stayed overnight at the airport, sleeping on benches. In the morning we flew to Uppsala, Sweden. The plane ride was smooth and relaxing all the way from Boston to Sweden. We were picked up at the airport by our friend Ollie, who took us to his home where we spent the weekend. 

Ollie took us around Uppsala over the weekend to see the sights and go to church on Sunday. Monday, we flew to Lulea in Northern Sweden, where my father was born. We rented a car at the airport and drove around Lulea exploring the city. We ate pizza and met a couple who we talked with us for two hours. They said it was nice to converse in English with us. We stayed in a hostel overnight and in the morning headed back south from Lulea by car. We drove in the country all day enjoying the farms, the cows in pastures, the rolls of hay in white plastic, houses and barns, and the hills of the countryside in Sweden.

The highways were great and I saw bus stops all along the turnpike that we were traveling on. We stayed at a motel in a town called Mea overnight and continued on to see our friends the next day. We stayed with Lenert and his wife Justine for five days.  They gave us wonderful healthy meals and relaxing days in a Swedish home. Also, they took us to Midsummer, a holiday festival celebrating the beginning of summer in Sweden. People danced around a May pole, played Swedish music, sang and ate lots of food. We went out for a meal at a restaurant near a lake I had salmon.  Boy, it was great!
I enjoyed the countryside in Sweden. From Lenert and Justin’s home, Allen and I took the train to Stockholm, the capitol of Sweden, and the last part of our trip. We stayed in a hostel in Stockholm for three nights.

Stockholm sits on 14 islands between Lake Malaen and the Baltic Sea. It reminded me of a city on the Atlantic or Pacific coasts. So many boats; sail boats, big cruise boats, small boats, work boats, and tour boats.

We learned some history of Stockholm on a tour boat  that Allen and I took around the city. Stockholm started as a trading post in 1252. Also, Allen and I went to the ‘old town’ in Stockholm. We walked and wheeled (I used my walker/wheel chair, Allen pushed me) through the narrow streets of ‘old town’ and we had a great meal in a restaurant. I had ‘Swedish’ meats balls.  They were good but not like my mother’s Swedish meat balls.

One night we went by subway to visit Lenert and Justine’s two daughters outside Stockholm for dinner. We had a great time.

The highlight in Stockholm was seeing the “old ship Vasa” that sunk in 1628 on her maiden voyage in Stockholm harbor and was salvaged in 1961. It’s the only preserved ship from the 17th century. Now the ship is housed in a new museum especially built for the ship. Millions of people visit each year.

We flew back to Iceland on June 28, where we stayed overnight in the airport and flew back to Boston the next morning. 

Even though I have been to many places in my own country, going to Sweden was the best trip in my life.

The whole trip ran smoothly and I had no trouble navigating the transportation in Sweden. I took my walker/chair with me so I could walk faster and when I got tired walking I sat down in the chair and Allen pushed me. The subways and the train stations were accessible for wheelchairs. The airports near Uppsala, Lulea, and Stockholm were accessible. They have elevators and the rest rooms are accessible. I don’t know about the laws, services, and programs for people with disabilities in Sweden, the goal is for Sweden to have people with disabilities be fully integrated in Swedish society.

However I would suggest if someone with a disability wants to visit Sweden or other countries in Europe, they should research what kinds of accommodations each country has for people with disabilities.  They should go online and type in the name of the country and accessibility/accommodations for people with disabilities. For example, I typed in traveling for people with disabilities in Sweden. I came up with Disability travelers-Sweden-Visit Sweden which is the official guide for travelers with disabilities traveling in Sweden. It tells about accessibility in hotels, transportation, stores and restaurants, as well as outdoor areas and other destinations.

For more information about visiting Sweden go to: www.visitsweden.com

 

THE RIDE
Larry Espling

Public transportation services operated by state and local governments are coved by Title 11 Part B of the Americans with Disabilities Act (ADA).

The Department of Transportation (DOT) enforces regulations related to the ADA. One such regulation requires all new buses to be equipped to provide services to people who use wheelchairs. A second regulation requires all State public transportation agencies to have paratransit systems for people who have disabilities and can’t use the regular transit system in their area. Here is the website http://www.dot.gov/

THE RIDE is the T’s para transit program. They provide door-to-door transportation service to eligible people who cannot use general public transportation because of a physical, cognitive or mental disability.  THE RIDE is a shared-ride service, which means you are traveling with other people and is complementary to the level of service that is comparable to our fixed-route system.

Accessible vehicles are used to serve people with disabilities, including those who use wheelchairs and scooters. “THE RIDE” operates 365 days a year with first pickup around 5:00 a.m. and ending at 1:00 a.m., mirroring the fixed route schedule in sixty cities and towns in the Boston area.

It costs $4 for a one-way trip for each registered passenger or twice the full fare for a comparable fixed-route trip. Additionally, THE RIDE one-way fares for Premium non-ADA trips will be $5.00. This applies when RIDE trip origin and/or destination is greater than three-quarters of a mile from or outside of operating hours for MBTA bus or subway, or for same-day trip requests.

Reservationists confirm the chargeable fare when a customer schedules a trip. If you are traveling with a Personal Care Assistant, the PCA is not charged the fare. The RIDE is also available to ADA certified out-of-area and/or out of state travelers visiting the area. Some documentation is required. Visitors have to call the MBTA to make arrangements ahead of time.

In order to use THE RIDE, applicants must complete and submit an application.  Per ADA regulations, 21 days is allowed to process applications upon receipt.  Only completed signed original applications, mailed to the address below, will be considered for review.  They will receive written notification of eligibility via U.S. Mail.

Personally, I have been taking THE RIDE to work four days a week, and a few other places like church for about five years. In those five years, I found THE RIDE on schedule every day, morning and night. I receive a phone call four nights a week telling me when THE RIDE is coming to pick me up in the morning and when it picks me up at work at night.

When I was accepted for THE RIDE, I was given an I.D. number that I use to reserve my transportation. When I call THE RIDE, I am asked for my I.D. number to identify myself.  Also, you are required to deposit funds in an account with THE RIDE to pay for rides. I regularly send in a check to make sure my account always has enough funds for my rides.

I am very satisfied with THE RIDE service the MBTA provides.

To get an application for THE RIDE contact:
MBTA Office for Transportation Access
10 PARK Plaza-Room 5750
Boston, MA 02116
Toll free in state 800- 533-6282 or
617 -222-5123
TTY: 617-222-5415
Download the application at-
http://www.mbta.com/riding_the_t/accessible_services/default.asp?id=7108

 

I never thought this would happen to me
Bob Barker

I grew up in South Boston and was bullied in grammar school.  I was a small thin kid, just the type bullies look for.

At age 13, I was diagnosed with Type 1 diabetes.  I was thin and frail. Determined not to look sick, I began a regimen of weight-lifting.  I did well for many years. I felt healthy, looked fit, and strong. My physique looked well-built, like a wrestler.

Over time, the complications of diabetes began to set in.  I had a heart attack, requiring a triple bypass. Following the triple bypass an infection developed in my left leg.  Further complications required my left leg to be amputated below the knee.  The loss of my leg was devastating and I wondered how I could continue.  Was life even worth living?

Eventually, I received a prosthetic limb.  This allowed me to walk normally, drive, work in my job as a high school teacher and do most things with ease. 

My left leg had no feeling.  I tripped in the garage and broke my right hip.  I had surgery to repair the hip requiring three pins.  After many months of rehabilitation my ability to walk had returned to near normal. 

One day I was changing the oil in my truck.  When I tried to stand up I wrenched my left hip and needed to have a total hip replacement.
My hip replacement caused my gait to be off and a blister developed on my right foot with ensuing complications.  After two years of treatments, that I hoped would save my right leg, I had to make the decision to amputate.  Now I had lost my lower right leg as well.

Life was complicated enough with one prosthetic limb and a below the knee amputation on my right leg.  Simple activities; such as getting in and out of my truck and moving through the snow became massive challenges.  Not being able to drive, using a wheelchair and depending on others were not acceptable to me. 

I applied for THE RIDE and gained more independence. 

With the help of my Mass Rehab Vocational Rehabilitation counselor, Eileen Sheehan, I was able to pursue adaptive driving with hand controls.

I am working part time and able to walk short distances without assistance.

People think you can’t do much in a wheel chair.  You can! You just have to put your mind to it and you can accomplish anything.  I am able to shovel snow, rake the yard, and do many of the things I used to do before I lost my legs.

When I reapplied at my former job they asked what I could do.  I demonstrated my skills and they were very impressed.  In fact, I work harder than people with two legs. 

Life is like playing cards.  I keep raising the stakes for myself and I never fold.   I push and challenge myself every day because “I never thought this would happen to me.”

 

There may be a silent epidemic in America causing disabilities
Donna DeGuglielmo

I have written before about myself and my health history.  Part of that health history includes strokes that have no known cause.  Before the strokes started in 2008, for many years I struggled with pain in different parts of my body, especially the in the area of the neck and back. At times it was debilitating for days, weeks or even months. That pain has continued for years.

I also began having food allergies. This grew into environmental allergies and a diagnosis of Multiple Chemical Sensitivities (MCS).  I often developed recurrent infections three different ones at the same time.  Many other random symptoms developed not related to infection or strokes.

I've had about 15 strokes in about three years, both hemorrhagic and ischemic.

I had already been through intensive workups in hospitals on the West and East Coasts.  They could not find anything conclusive, either hereditary or organic causes of my strokes or any of my other health problems.
I started seeing a doctor again for MCS, chronic fatigue and other symptoms I was having. The doctor looked at some recent lab test results. He stated he had not seen these results before and believed I have Lyme disease. He repeated the lab tests and I was positive for Lyme disease. This finding, he felt, was the culprit to my many health problems and diagnosed me with Neuro-Lyme disease.

I felt relieved, lucky in a way, because now I know what I have: Lyme disease.  Now I can be treated properly.

Thinking back I remembered, in my 20s, I had a tick bite on the top of my head. I went to a nearby Emergency Room for a look. They found nothing in the site of the bite and all labs were negative.  I was given a clean bill of health and sent home. A short time later the infections started and I had no idea what caused them.  Come to find out, research indicates, that the tick itself does not need to be lodged in the site for someone to get Lyme disease.

Spending hundreds and thousands of dollars and countless hours in medical costs over the years just to stumble upon a Lyme literate Doctor (LLMD) was a Godsend to me. The doctor explained it’s not easy to diagnose Lyme disease.  Lyme disease symptoms mimic many other diseases.  Your doctor will listen to your symptoms and develop a diagnosis based on their best experience.  If they do not have Lyme disease experience, or are, what I call a Lyme Literate Doctor you may not be correctly diagnosed. 

Moving forward, when I see my LLMD and Neurologist, we go over my current symptoms and treatments at each appointment.  Some of the treatments have been tough, although I do feel better.  I have heard this same sentiment from other people: they feel sick before and during the treatment but feel much better later.  I am looking forward to a future with my symptoms under control.  There is a good chance of that with a Lyme literate Doctor.

"Lyme disease is a silent epidemic in America. We want to alert and educate consumers about this disease, which is often misdiagnosed. Left untreated, it will become chronic and debilitating," said Leo J. Shea, III, PhD, President of the non-profit International Lyme and Associated Diseases Society (ILADS).  "Tick-borne illnesses compromise your immune system and the diagnosis, which is largely based on symptoms, can be elusive unless a physician is Lyme-literate."

 

Dual Eligibles 
Girard Plante

The hot-button healthcare issue of this year’s presidential race has been the Affordable Care Act.  But in the Commonwealth of Massachusetts it’s the Dual Eligibles conundrum that’s stirring the debate over health care.

Say what? We Duals thought the public hearing way back in January, whereby consumers could attend and ask the vexing questions about how exactly changes to our coverage would impact our lives, was taken seriously by policymakers.

Surely that’s the purpose for consumers being invited to assist in reworking the latest in health care reform to hit the Commonwealth of Massachusetts. Controlling our daily health care regimen is life-enhancing and even life-saving. But allowing “primary practice medical homes” to manage our health care needs seems, on the surface, not realistic.

Leaving our lives seamlessly unscathed because we have chosen the healthiest way to direct our health care regimen for years as participants in the state’s Personal Care Attendant Program is the most cost-effective approach. So what gives now?

Let’s be clear about what is a Dual Eligible. Dual Eligibles are recipients of both Medicare and MassHealth (Medicaid). They are, according to administrators of MassHealth, people typically age 21-64.

A podcast held last winter, sponsored by New Directions in Healthcare, said this about Dual Eligibles: “These people tend to be frailer, older, certainly poorer and sicker than the average person in either program.”

My initial thoughts to that grim depiction was: where and how did they arrive at that particular assessment?Well, the podcast never explains. I’m also a Dual Eligible. And I need you to know that assessment does not describe me! 

I testified at the public hearing last winter and I nearly got cut short just as I began speaking by the person who was moderating the event. That alone didn’t deter my testimony and convictions that some of the data being tossed about is inaccurate or plain wrong. Yet that public hearing did set the tone for what will become a game changer if you decide to participate in the experiment to receive better care at the least cost as the drive to reform medical care and treatment of Dual Eligibles chugs along.

While the public hearing satisfied the directive from the federal government that administrators of MassHealth must hold a public hearing to give people the opportunity to be heard, still many more questions remain. And confusion is scaring people who need and possess a right to the information available by MassHealth.

What about changes that may adversely affect our independence in the way we choose to receive our health care?  For example, Integrated Care Organizations or ICOs are expected to oversee a care plan to suit one’s unique needs. I remain skeptical that an ICO would arrange my daily healthcare regimen in the way that works best for me. I fear choice/autonomy may be stripped by insurers and others joining the search for the billions of dollars at stake.

After all, we know best what our health needs are.  Better than any ICO care team. Though administrators of MassHealth will claim they’ve made overtures to inform consumers for months that change is coming effective January 2013, still confusion consumes too many people ill-equipped to get that specific information that may or may not suit their unique situations.
We were promised to actively participate in the decision-making processes that established the new reform, but we never truly were afforded opportunities to dive into the meat and potatoes of the impending changes that are surely coming.

Beginning January 2013, Dual Eligibles may start signing on to a particular Integrated Care Organization. Then by April, ICOs begin services. And if you’ve not decided on an ICO by next July, or simply choose to “opt out,” you will be automatically enrolled.  Exactly what that means is beyond me. I intend to get answers to my numerous questions.

Be assured that advocates and stakeholders are planning public meet-ups to thoroughly discuss the implications of the entire reform for Dual Eligibles as of this writing. So, I hope to see you and listen to the best practices of your unique health care regimen and how it may change or not change depending on which course you choose.

Remember that the changes are all about choice. It’s wise for you to get informed early and grasp that knowledge that will provide you with the best outcome for your daily health care needs.  You deserve no less!

For more information about Dual Eligibles, visit www.commonwealthfund.org

Featured Artist

Elizabeth Colburn-Moraites received her BA in fine arts from the University of Massachusetts in Boston. She also attended Massachusetts College of Art in their Continuing Education Program. While she was in school and following her education, Elizabeth worked as a graphic designer and illustrator for 12 years.

In the winter of 2000, Colburn-Moraites began working as a fine artist. Her works have been shown in the Boston area, NYC, and Washington DC to name a few. Her showings have been written up in the Boston Herald as well as the Boston Globe. Her work has been collected nationally and in Europe by private collectors, corporations, and non-profit institutions.

Colburn-Moraites’ works now include: mixed media and collage. Currently, she is working on a series of paintings which glorifies the average man.  Elizabeth also creates collages made from paper, leather, and found objects on rag. Elizabeth is a member of the Arlington Center for the Arts. Her works can be found on Facebook at http://www.facebook.com/ECMfineart .

 

Go green, Save a Tree :Have the Consumer’s Voice sent by e-mail. If you are interested please e-mail your request to: consumer.involvement@mrc.state.ma.us 

 

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.

For further information contact Emeka Nwokeji, Director of the Consumer Involvement Program, at 617-204-3665.

 


This information is provided by the Massachusetts Rehabilitation Commission.