From the Editor’s Desk
Elaine McHugh

Lisa Weber has left the Consumer Involvement program (CI) here at MRC.  She accepted a position as Consumer Programs Coordinator for the Office of Consumer Affairs and Business Regulations (coordinating the state automotive Lemon Law).

Lisa was an integral part of Consumer Involvement.  Many of you know her as the coordinator of our highly successful Annual Consumer Conference. She also was the program liaison for the Artists Beyond Challenges Committee, District Consumer Advisory Councils and State Rehabilitation Council.  We wish Lisa luck and happiness in her new endeavor!

We have articles from Betty Maher, Director of Home Care on the MassOne program and Bill Allen, Director of Workforce Development about the art of networking.

Louise Speck introduces us to the Brain Trust at Massachusetts Institute of Technology.  The Brain Trust is a student run service organization that deals with patients with any kind of brain related condition.  They organize social events and discussion panels to educate the public on brain related conditions.

Girard Plante brings us an article on Emik Avakian.  Emik Avakian is from Chicopee, MA and made sure that no person who relies on a wheelchair for mobility would struggle to move from one place to the next.

We are 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 via email at
consumer.involvement@mrc.state.ma.us or by phone 617-204-3665.

A Message from Secretary Polanowicz

Today I’m pleased to announce Kristin Thorn as Medicaid Director and Olga Roche as Commissioner of the Department of Children and Families (DCF). Please join me in congratulating Kristin and Olga in their new positions.

Medicaid Director – Kristin Thorn

Under Thorn’s leadership as acting director, the MassHealth team has worked diligently to implement the Affordable Care Act (ACA), advancing our nation-leading health care access for families across Massachusetts.

Thorn has been integral to recent successes at MassHealth, including the launch of the Care Plus program to provide comprehensive health care coverage for low-income residents through the ACA. Earlier this summer, MassHealth advanced its One Care program to better serve adults with disabilities who receive both MassHealth and Medicare benefits.

MassHealth recently began an innovative new predictive modeling program under Thorn’s leadership that will help detect and prevent provider fraud, waste and abuse in real-time. Thorn also played major roles in negotiation of Massachusetts’ 1115 Waiver. These advancements are integral to the Patrick Administration’s health care cost containment and program integrity efforts.
An attorney, Thorn has been with MassHealth for the past three years, first as chief of staff, overseeing central operations for the $11 billion agency, and later as deputy Medicaid director for administration. She formerly served as an official with the U.S. Department of Energy and later as director of operations for Governor Deval Patrick. She is a graduate of Franklin and Marshall College in Lancaster, Pennsylvania and earned her law degree from Southern Methodist University in Dallas, Texas.

DCF Commissioner Olga Roche

Olga Roche has served at DCF since the beginning of the Patrick Administration, helping build a strong system of protecting children and families across the Commonwealth.
 
During Roche’s time as interim Commissioner, and previously as deputy commissioner for field operations, DCF has expanded kinship placements, increased adoptions and enhanced foster care supports. The Commonwealth’s recent victory in the Children’s Rights case reflects DCF’s hard work and progress in these areas.

Roche is an experienced health and human services administrator with more than 30 years of management experience in child welfare and juvenile justice. She has worked for DCF in previous roles as regional director of the northern region and area director of the Lawrence, North Central and Worcester area offices.

She brings extensive experience in juvenile justice, having served as a manager and direct care worker with the Department of Youth Services over six years. She is fluent in Spanish and has worked in Puerto Rico as a probation officer in the Juvenile Court of Guayama, and as adjunct professor at Catholic University of Puerto Rico.

A licensed social worker, Roche holds a Masters of Social Work from Our Lady of the Lake University in San Antonio, Texas; and a Bachelors of Social Work from Catholic University of Puerto Rico. She is a resident of Worcester.

Again, please join me in welcoming Kristin Thorn and Olga Roche to their new roles.
John W. Polanowicz
Secretary, Executive Office of Health and Human Services

Announcement of Paul Saner as the new  Massachusetts Commission for the Blind Commissioner

Since the start of Governor Deval Patrick’s first term, Janet LaBreck has served as an ambassador for more than 30,000 legally blind residents across the Commonwealth as commissioner of the Massachusetts Commission for the Blind (MCB).

Under Commissioner LeBreck’s leadership, MCB has helped thousands of individuals achieve independence and self-sufficiency through an award-winning internship program, career partnerships with employers, and innovative programs like the New England On-Sight Mobile Clinic.

The U.S. Senate has confirmed LeBreck as President Obama’s Commissioner of the Rehabilitation Services Administration in the Department of Education. This is a tremendous honor. I know her talents will go a long way toward helping individuals with disabilities across the country attain independence and economic self-sufficiency through employment, just as she has done for those across Massachusetts.

I am pleased to announce longtime community leader and advocate for the blind, Paul Saner as our new MCB commissioner. Saner is a former managing director of BankBoston (now Bank of America) and previously worked as a real estate executive.
 
After leaving the private sector, Saner has used his passion for helping fellow blind residents become fully included in their communities through his work with numerous non-profit and community organizations.

Saner has served as a volunteer vision rehabilitation teacher and board vice chair at The Carroll Center for the Blind in Newton and as a leader with the Perkins Braille and Talking Book Library in Watertown.
Saner is a co-founder of Boston’s Metropolitan Waterworks Museum and served until recently as its board chair. He was a member of MCB’s Rehabilitation Council for seven years and is also active in his local government, serving as a Town of Brookline meeting member and co-chair of the town’s Economic Development Advisory Board. He holds an MBA in Finance from the University of Rochester and a BA from Trinity College.

Please join me in welcoming Paul Saner to his new role as MCB commissioner and in congratulating Janet LaBreck on her appointment in the Obama Administration.

John W. Polanowicz
Secretary, Executive Office of Health and Human Services

The Department of Elementary and Secondary Education (DESE) Professional Development Grant

The Massachusetts Rehabilitation Commission (MRC) is pleased to announce that the MRC will be a Partner on the Department of Elementary and Secondary Education (DESE) Professional Development Grant, a five-year federal grant from the US Department of Education that will focus on Secondary Transition as one of the areas of professional development for school staff.  

DESE has recently awarded grants to the six local school districts that will serve as Model Sites for this grant.  They include:  Attleboro, Beverly, Chelsea, Pittsfield, West Springfield, and Winchendon.  MRC will be working with these school districts to strengthen the collaboration between high school staff and their local MRC VR Area Offices, Independent Living Centers and other community living provider agencies that support young adults with disabilities to transition from the educational system into the adult service system. MRC’s role in the grant is to disseminate best practices from the MRC Transition Works Grant. 

School staff will also have the opportunity to participate in Transition trainings that will address topics including Vocational Assessment; Independent Living Skills Assessment/Functional Skills Development; Working with Adult Agencies; and Chapter 688. MRC will be designing curriculums for these trainings and tapping into MRC staff and provider expertise to accomplish this.

As you know, MRC and DESE have worked closely for many years to ensure that students with disabilities make a successful transition from school to work and adult life.  Under IDEA and the Rehabilitation Act there is an increasing need for coordinated and comprehensive transition planning for students with disabilities when they graduate and transition from school to work, postsecondary education, and independent living.

Through this DESE Grant, called The Partnership Project (TPP), training and technical assistance will be provided to school teams at the Model Sites. 

Jane Buckley, Transition Team Supervisor of the MRC Community Living Transition Team, will serve as the MRC representative on the DESE/TPP Leadership Team and coordinate MRC involvement with DESE and the Model Sites.  Roger Thomas, MRC Transition Works Grant Coordinator, will be working on the DESE Grant as the primary liaison with the involved MRC Area Offices and will be disseminating best practices from the TW Grant to the school teams at the Model Sites.  More information about the initial activities of the grant will be provided in the near future to the MRC Area Directors and CL staff working with the Model Site school districts. 

Artists Beyond Challenges
Lisa Weber

The Massachusetts Rehabilitation Commission (MRC) Artists Beyond Challenges (ABC) group had a strong presence at the recent Abilities Expo which was September 20-22, 2013 at the Boston Convention and Exhibition Center.
  
The Artists partnered with several other organizations that work with artists with disabilities.  These include Very Special Arts (VSA) Massachusetts, and Gateway Arts.
 
Many different types of artwork were available including photography, jewelry, paintings, and a variety of mixed media pieces.  The group made over $1200 in sales and was one of the more successful sales events in the group’s history.  Artists Beyond Challenges was invited to participate in the 2014 Abilities Expo, and we look forward to another successful event.
 
The Artists Beyond Challenges Task Force is a group of people from diverse disciplines working toward creating linkages between Artists with Disabilities and the Massachusetts Rehabilitation Commission.  These linkages advance the goals of independence, self-support, and professional development in the art world.

Artists Event at Bentley University 
Lisa Weber

The Massachusetts Rehabilitation Commission (MRC) Artists Beyond Challenges (ABC) held their second annual artists event on September 12, 2013 at Bentley University.
 
Michelle Brown-Droese led the workshop on Business Skills for Artists.  Michelle is the CEO and Founder of Surpass, a boutique business consulting firm, specializing in small businesses and marketing green initiatives. Michelle has over 20 years senior experience in the non-profit, philanthropic and healthcare fields. In this work, she focused on bringing philanthropy and corporate social responsibility to under-served clients and communities.
 
Michelle is a graduate of the Simmons College School of Management where she earned her MBA with a concentration in Marketing and a focus on Corporate Social Responsibility. She is the founder of the Simmons School of Management Mentoring Program and a student representative of the Simmons School of Management Alumni Association.

Michelle is very active in her community where she has mentored young Latina women for higher education for more than 14 years.

Her workshop focus was on artists developing their artwork into a business; How to do that and the steps you will need to take. Initial discussion centered on the Artists Beyond Challenges as a group identifying their strengths and weaknesses. The presentation focused on the following:

  • Fundraising opportunities for artists and State resources.
  • Housing and studio space the opportunities and challenges in Massachusetts.
  • Legal issues; copyright, fair use and contracts.
  • These are basic fundamentals ABC needs to succeed in marketing.
     Money: budgets, income, expenses, savings assets, debts and financial goals.
  • Web site development.

The workshop was well received by all in attendance.

The Artists Beyond Challenges (ABC) is a sub-committee of the Unserved/Underserved Committee.  If you would like more information please contact the Consumer Involvement Program of the Massachusetts Rehabilitation Commission by email at consumer.involvement@mrc.state.ma.us or by phone 617-204-3665.

The BrainTrust at MIT
Louise Speck

Massachusetts Institute of Technology (MIT) Brain Trust is a student-run service organization dealing with patients from the Boston area who have any kind of brain-related condition. The MIT Brain Trust hosts events including panels, awareness fundraisers, and social gatherings. We also educate the community about the brain and brain injury related disorders through Brain Injury Awareness booths, and classes during Splash an annual event where MIT students teach exciting classes to high school students.

Our goal is to provide real-world opportunities to students and other members of the MIT community interested in topics such as cognitive science, medicine, assistive technology, cognitive or neurological prosthetics, and Internet sociology. Members’ efforts directly help people living with neurological impairments. Participants expand their understanding of such disorders and new technologies being developed to help people who have them.

We work closely with the Healing Exchange Brain Trust, a Cambridge-based non-profit organization. The
Brain Trust’s essential mission is to make the experience of having a brain tumor or other neurological disorder more manageable by helping people communicate about support issues, medical topics, and research.

On Saturday, August 24, 2013, I joined a group of incoming freshmen for lunch at MIT.  The school was holding a pre-health studies orientation for new students.  Because I have participated in the Brain Trust for several years, I was asked to speak about my experiences both as a patient with a traumatic brain injury and as a survivor paired with a student club member.  Seeing the interest in their faces and answering their questions made me freshly aware of how unique this club is.

Founded in 1998 by a brain tumor survivor, the group is entirely student run and organized.  MIT accepts it as a bona fide club, assigning bulletin board space and meeting rooms, also sponsoring some of its activities.  Since individual priorities change each semester and each year the character of the club likewise is influenced by membership turnover, while retaining the core commitment to partner brain injury survivors of all types with interested MIT students.

Students come from a variety of study fields; pre-med and other health related fields, engineering and math majors.  They are motivated to learn more about life with a brain related disability and to contribute to the welfare of the community.  Survivors deal with brain involvement of a variety of causes and are invited to participate via out-reach to rehabilitation hospitals and support groups.

Pairing students with survivors provides a personal connection.  Each student is responsible for notifying the survivor partner about club events in the best method suited to the survivor.  In some cases multiple reminders are necessary, others are best if emailed, phone calls or a combination of some or all methods.  Each survivor then has a contact person to direct questions to and gives feedback.  Sometimes friendships are further developed outside of club functions.

Museum trips, picnics, walks, sailing and holiday sing-a-longs are among the activities scheduled twice a month. A panel on a specific brain issue is planned each semester.  These panels include presentations from a clinician, a researcher and a patient.  The panels are open to the student body and MIT community.  All are well attended.

Brain Trust hosts Technology Office hours several times each semester.  Survivors can drop in with questions or problems they are experiencing using phones, computers and other technology.  Students are ready to tackle any issue or explain ways to maximize the use of technology based gadgets.

Interested survivors and others can learn more about Brain Trust and Splash by going to www.Braintrust.MIT.edu.

Remembering Emik Avakian
Girard Plante

Over the past few years the Greater Boston area has lost several leaders within the Disability Rights Movement. Their absence has left an enormous void in the ever-evolving atmosphere of ensuring that government-funded core programs and services remain for people in need.

In spite of the loss of our friends, their precious time spent actively advocating for myriad improvements for those of us still carrying the torch of self-determination, has further heartened our collective spirit to continue fighting in the same spirit they shared with us.

People such as Paul Kahn, Jimmy Tierney, Fred Fay, Cybil Feldman, and certain others whose imprint has changed countless lives for the better, are recalled still for their extraordinary efforts to lead by example despite their unique life situations.

Emik Avakian, who passed away this past July at his home in Chicopee, MA, is the elder champion of the cause to include the rightful place in our society, indeed the world, of persons with disabilities. The 92 year old Emik made sure that before his long life ceased no person who relies on a wheelchair for mobility would struggle mightily to move from one place to the next. One of his signature inventions, for example, gave life to the motorized wheel chair.

Emik was born with Cerebral Palsy during an archaic era when people with disabilities were being carted off to state-run institutions at the ‘advice’ of their family doctors. But Emik’s enlightened parents did not allow any doctor to shape their son’s life.

Instead, they created a spirited environment for Emik to hone his birthright of a brilliant mind that never stopped preparing and planning various technologies that liberated people from the prevailing societal mindset that didn’t see persons with disabilities as having possibilities.

One such incredible invention was a typewriter that allowed him to create letters using his breath as opposed to typing with hands.

Though his complex invention proved slower to use, he needed a way to take notes in a unique way after difficulty communicating with typists. At that time, he was a student at Eureka College, where he graduated Magna Cum Laude with a degree in physics and mathematics. Emik also earned a graduate degree from Columbia University.

Because of his many inventions to improve the lives of persons with disabilities, as well as his patents that set the standard for superior technologies, President John F. Kennedy awarded Emik a medal recognizing his earnest efforts on behalf of persons with disabilities.
 
Emik received numerous other recognitions such as the Eminent Engineer Award (1979), Armenian Bicentennial Committee’s “Excellence in the Field of Engineering Award,” and an honorary doctorate from Eureka College. And, he was featured in several publications in Lifemagazine in the 1950s and 60’s.

Upon his passing, Emik was married to his wonderful wife Anne for 34 years. She and her daughters cared superbly for Emik as he slipped away from his earthly existence in his final days.  Emik was a proud and well-loved grandfather, too.

My friend and colleague in all things disability rights, attorney Jason Rosenberg of Newton, recalled Emik fondly in an e-mail to me in late July.  “Emik was a trailblazer long before the ADA, before advocacy groups, before campaigns to make the public aware that a disability does not take away one’s humanity, intelligence, or ability to contribute to society.” 

After reading about Emik the man and humanitarian and humorist, as well as a life filled with diverse experiences that brought numerous important creations to enrich the lives of people with all manner of disabilities, I replied to Jason that I’d like to write the fascinating account of Emik’s achievements in a future edition of the Consumer’s Voice.

Jason added: “When you are blessed to live a productive and happy 92 years (as Emik did), the one thing that happens most often is those that were there when you did all those groundbreaking things are gone. I thought what he (Emik) did in those ‘dark old days’ needed to be trundled out again into the sunlight. Our progress is built on heroes like Emik.”

One Care:  Massachusetts’ Integrated Care Plan for Those on MassHealth and Medicare
Betty Maher, Director of Home Care at MRC

You may have heard: MassHealth and Medicare have joined together with health plans in Massachusetts to offer One Care: MassHealth plus Medicare.  One Care (formerly referred to as “the Dual Demonstration”) is a new way to receive your MassHealth and Medicare benefits, through an integrated care team, with you, the consumer, at the center of the team.  Each person who enrolls in a One Care plan will be assigned a Care Coordinator, who will work with the consumer to assess their health, mental health and long-term support needs, develop a Personal Care Plan, and coordinate services.
 
One Care lets individuals have access to the same benefits they have through MassHealth and Medicare. In addition, One Care offers options that have not been traditionally covered by MassHealth or Medicare, but that have a positive impact on a consumer’s health, well-being and ability to remain in the community.  Such benefits can include peer counseling and support, Personal Care Assistance for cuing and supervision, non-medical transportation, home modifications and home care services. As the One Care website says:  “One simple choice may help you live healthier, stay more active, and be more independent, by simply bringing your care together.”

You may have already heard about One Care, and you may have already received materials from MassHealth about this option.  As you review the materials, there are a few important things to keep in mind:

If you need assistance in deciding whether to choose a One Care plan or which plan is right for you, you can contact MassHealth Customer Service or request counseling from a SHINE (Serving the Health Insurance Needs of Everyone) Counselor.  You can also contact each plan directly (contact information is below).

Think about all of your current services and benefits, including not just your primary care physician but your medical specialists, your therapists, your durable medical equipment providers, your medications, and your long-term supports that are currently covered by MassHealth and/or Medicare, and find out which plan offers the best options of providers for you.  In One Care, if you do not currently have all of the providers you need, your care team can help you identify new providers to work with you.

Even if some or all of the providers you currently see and want to keep are not in a One Care plan network, plans may be able to add your providers to their networks if you ask.

Enrolling in One Care is OPTIONAL, even if you receive notice that you are being assigned to a plan.  If you are notified that you are being assigned to a plan, you will also be informed that you may choose a different plan, or you may OPT OUT, meaning that you can keep things just the way they are.

Even if you choose a plan now, you can always change your mind, change your plan or opt out at any time.

When you enroll in a plan, you will be assigned a Care Coordinator who will work with you to ensure that your needs are identified, and addressed through a Personal Care Plan. Until the Care Plan is developed, you can continue with all of the services and service providers that you currently have through MassHealth and/or Medicare (the plan should be developed within 90 days of your enrollment).

If you need long term services and supports such as Personal Care Attendant, Adult Foster Care, Adult Day Health or home care, you can have a Long Term Supports Coordinator, from a community organization, on your team.

If you have a complaint or disagreement about your services, service plan or other issues related to your One Care coverage, you can file an appeal with the One Care Plan, with MassHealth or Medicare directly, or you can contact the organization that will act as Ombudsman for all One Care enrollees.
 
MassHealth has worked closely with consumers and advocates throughout the development of the One Care Program, and continues to listen to consumers’ needs as the program is developed and implemented.  The One Care Implementation Council, which was convened to advise MassHealth about One Care, includes many people with diverse disabilities and from diverse communities of the state.  Meetings are open to the public and information is posted on the One Care Website located at www.mass.gov/MassHealth/OneCare.

The three One Care Plans, covering parts of Massachusetts:

Commonwealth Care Alliance, available to individuals living in Essex, Franklin, Hampden, Hampshire, Middlesex, Norfolk, Suffolk, Worcester, and parts of Plymouth counties (Plymouth county is covered except for East Wareham, Lakeville, Marion, Mattapoisett, Wareham, and West Wareham). Customer Service Line: 1-866-610-2273; TTY: Call 711 (for people who are deaf, hard of hearing, or speech disabled).

Fallon Total Care, available to individuals living in Hampden, Hampshire and Worcester Counties. For information before you enroll: 1-800-879-0852 Customer Service Line: 1-855-508-3390; TTY: Call 711 (for people who are deaf, hard of hearing, or speech disabled).

Network Health, available to individuals living in Suffolk and Worcester counties. Customer Service Line: 1-855-393-3154; TTY: 1-888-391-5535 (for people who are deaf, hard of hearing, or speech disabled).

For more Information:

MassHealth Customer Service

Monday – Friday 8 a.m.-5 p.m.
1-800-841-2900
TTY: 1-800-497-4648 (for people who are deaf, hard of hearing, or speech disabled).
www.mass.gov/masshealth/onecare

SHINE (Serving the Health Insurance Needs of Everyone). 

Monday – Friday 9 a.m.-5 p.m.
1-800-243-4636 TTY: 1-800-872-0166 (for people who are deaf, hard of hearing, or speech disabled).


The Workplace Corner
The Art of Networking and the Hidden Job Market
Bill Allen, Director of Statewide Employment Services-Job Placement at Massachusetts Rehabilitation Commission

Your next job believe it or not may be closer to you than you may think. Most job seekers are not aware of how they can create their own opportunity with employers through what is known as the "hidden job market." Business experts from JobStar Central to Forbes know that 80% of all jobs are not advertised. So you may be thinking where is the hidden job market and how do I find it?  

The hidden job market is found through "networking" which is something we all do every day with all areas of our life. A friend tells you about a great restaurant or the deal they just got on their automobile or an incredible sale on a new suit you may need for your next job interview. It begins as a casual conversation and more often than not eliminates the fear of the formal job search for both the job seeker and employers. Employers would highly prefer to interview people from referrals they respect and trust. In addition it saves money on advertising and recruitment costs. Networking clearly serves all stakeholders in the job search process extremely well.

The Networking Plan:

1. Ensure that you have identified the right vocational goals that are matched to your skill set and talents.

2. Your resume and cover letter should match the job you are seeking. You may need several resumes if you have credible transferable skills (be open minded and flexible).

3. Keep your motivation level high during your job search, this can be   difficult and frustrating, but enlist your greatest supporters such as family, friends to keep you moving forward. They are your biggest cheerleaders.

4. Develop your network list to include: family, relatives, friends, neighbors, community groups, your place of worship, all social media outlets such as LinkedIn, Facebook, etc., local Career Centers, previous employers, your local grocer and pharmacy.  These networks can be extremely powerful and are underutilized.

5. Get organized with your lists and contacts. Keep copious notes, as each contact listed above will probably provide several names that could be the decision-maker that could result in your next job.

6. Develop a pre-planned script known as your elevator speech or your very own 60-second commercial.

7. Practice your script with a trusted friend and/or family member. You may even want to be videotaped. This approach is highly effective and will build confidence as you progress through your job search.

8. Check in with your contacts and exhibit polite persistence.

9. Register with a staffing company. Many employers use staffing companies during a sluggish economy. This is a great barometer for growth opportunities in various labor market sectors.   

10. Be persistent and check your plan often.

Networking In Action:

My very first job and the current position I have were both due to networking. Allow me to share how this happened.

The first job resulted with my neighbor. When I was 16 I just got my driver’s license and had the great fortune of finding a deal on a car. It was a 1965 Ford Falcon (a three speed shift on the column which my parents taught me to drive...thanks Mom and Dad). I now needed a job to pay back my parents and pay for gas and insurance.

My neighbor who was 15 identified an employment opportunity with Bob's Turkey Farm. He was already working there and knew of a potential job opening as the owner asked him "Do you know of anyone else that would like to work on the farm?"

Thanksgiving was fast-approaching and he needed assistance with preparing and transporting the holiday birds to their final destination. My neighbor also had a vested interest with me getting hired, as he would not have to walk to work. I applied and was interviewed and hired as a turkey transporter.

Although I had no knowledge of networking or the hidden job market, it served me extremely well. This first work experience also provided me with the necessary workplace skills for future jobs.

In my current role as Director of Statewide Job Placement Services for the Massachusetts Rehabilitation Commission, I see how networking the hidden job market has uniquely empowered hundreds of qualified individuals with disabilities to obtain employment and grow their careers in the competitive world of work.

There are many resources that can assist you with understanding the benefits of the hidden job market and below are resources that will serve all job seekers extremely well while reducing stress associated with your job search. Good luck!

Hidden Job Market Resources
Forbes Magazine Online:
6 Ways To Crack The 'Hidden' Job Market

JobStar Central:
What is the Hidden Job Market?
QUIZ: Is the Hidden Job Market Going to Work for Me?
 


Book Review: Unstrange Minds, Author: Roy Richard Grinker, Remapping the World of Autism 
Larry Espling

This article first appeared in Disability Issues Fall 2013.

Unstrange Minds begins with Roy Richard Grinker's personal story: his family's battles with the school system, the rare orchid his daughter Isabel plucked at the Smithsonian and a day in Monet's garden that changed Isabel forever.

But because Grinker is an anthropologist as well as a father, Unstrange Minds takes us across the globe-to South Korea, South Africa, Peru, and India.
  
Based on his work in the United States and abroad, Unstrange Minds presents the controversial idea that there is no evidence for an autism epidemic.

Rather, the high rates of prevalence and diagnosis today are instead evidence that scientists are finally counting cases correctly. This is a good thing.  Not only for the U.S., but for the world, including cultures that have only just begun to learn about autism.

Unstrange Minds shows how the shift in how we view and count autism is part of a set of broader shifts taking place in societies throughout the world. The growth of child psychiatry, the decline of psychoanalysis, the Internet, the rise of international advocacy organizations, greater public sensitivity to children's educational problems, and changes in public policies have together changed the way autism is diagnosed and defined.

Societies are becoming more aware of children's behavioral and learning differences at earlier ages, more comfortable with diagnosis, medication, and psychiatric labels.

Under the rubric of autism we now find a multitude of emotional and cognitive problems, problems that used to be given other diagnostic labels or were considered within the range of normal.

Doctors now have a more heightened awareness of autism and are diagnosing it with more frequency.  And public schools in the United States, which first started using the category of autism during the 1991-1992 school year, are reporting it more often, developing ways to help children with autism, and directing parents to appropriate resources. Epidemiologists are also counting it better.

As a result, the statistics on autism that we have today - 1 in 166 -- are the most accurate we've ever had. After all these years, we have realized that autism is a major public health concern.
  
This book is a good read for anyone who knows someone on the Autism Spectrum Disorder.

Asperger’s Syndrome Verses Autism Spectrum
Larry Espling

According to the DSM-IV , the diagnostic criteria for Asperger’s Syndrome (AS) includes a qualitative impairment in social interaction, such as problems with eye contact, facial expression, body language and posture, a failure to develop friendships, an inability to share common interests or to reciprocate socially or emotionally.

The second diagnostic criteria for AS are; “restricted repetitive and stereotyped patterns of behavior, interests, and activities” such as an intensity focused preoccupation with interests.

These disturbances must create clinically significantly impairments in social, occupational, or other areas of functioning. What people with AS don’t experience are delays in language, motor skills, or cognitive abilities.

There is some overlap between the diagnosis of AS and Autism. However, children with Autism also have developmental delays that children with AS don’t have, such as problems with delayed, or a complete lack of speech and/or imagination.

The American Psychiatric Association (APA) recently announced the publication in May 2013 of their new diagnostic manual which will remove Asperger’s Syndrome as an independently listed condition (as well as Pervasive Development Disorder – Not Otherwise Specified) and instead replace it with a sole diagnosis of Autism Spectrum Disorder (ASD). This has generated a range of opinions and worried many people who fear the diagnosis or that of a loved one will no longer be recognized. In this article, we try and address some of those concerns and attempt to clearly explain what DSM-V will really mean for those affected by Asperger’s Syndrome (AS) now and in the future.

The decision was passed by a vote of the APA, on the basis that it made sense clinically and in real-world terms to classify all types of conditions on the autistic spectrum as autism, as in the behavioral sense they are deeply connected though autism in all its forms. In particular, it was pointed out that the existence of a separate diagnosis for a condition which was also on the Autistic Spectrum has caused confusion and misdiagnosis in the past.

One reprieve for Aspergers Syndrome was that while it will no longer remain as a diagnosis it can continue as a label for people who wish to describe the condition as such, though all diagnosis will now be under the new sole term. Under this term the classification system will include three levels for the varying levels of severity of the condition.

Implications:

Those currently diagnosed should expect to remain diagnosed whether it is decided to continue to use the term “Asperger’s” or “ASD”. In truth, many doctors are likely to continue to use the term for years to come and those currently holding a diagnosis can rest assured that their diagnosis will continue to be recognized and their statuary entitlements should remain the same.

Many people, who have AS, are upset about the APA dropping AS from the DSM-V as a separate disorder and putting it into Autism Spectrum Disorder (ASD). They are proud to have the AS diagnosis. “Aspies” enjoy the fact they share common traits with notable historical figures that may have had AS, like Albert Einstein, Isaac Newton, Benjamin Franklin, several American presidents, and artists such as Leonardo DaVinci, Vincent Van Gogh, Beethoven, and Elvis.

Even Bill Gates and Henry Ford are rumored to have had AS.  Who wouldn’t want to be included and have something in common with these people?

The disagreement over dropping Asperger’s Syndrome from the DSM-V as a separate disorder and including it into Autism Spectrum Disorder, is that people with AS don’t consider themselves autistic and they should not be put into ASD with people who have more severe autism. They and their parents are concerned they will lose services that are geared toward people with AS who are high functioning. 

Experts say not to worry; people will still be recognized as high functioning on the spectrum and believe services will be available for people with AS.

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

The AT Exchange in New England 
www.getATstuff.com

The AT (assistive technology) exchange is MassMatch’s free AT device exchange program.  The Equipment Exchange is similar to a “want ad” where pre-owned AT is listed in order to put people looking for AT in contact with sellers or donators.  The Equipment Exchange is an opportunity to re-sell or buy AT for a lower cost than new items; such as,

  • wheelchairs
  • computers
  • daily living aids

To buy,  donate or sell used AT, call the toll free MassMATCH INFO-line at 1-866-682-9955, 1-617-204-3851(V),
1-617-204-3851(TDD) or visit the website at www.getATstuff.org.

Becoming an Individual Consumer Consultant (ICC)
Leslie Wish

The Massachusetts Rehabilitation Commission’s Consumer Involvement Program makes a special effort to form cooperative relationships with those individuals who are known as consumers or recipients of services.

We are interested in applicants for the ICC program that have skills and experiences valuable to the needs of the MRC.  The program is open to both MRC consumers and their immediate family members.

This program is for MRC consumers to gain work experience and as such, they are encouraged to apply to gain meaningful employment skills working on projects as an ICC.  This is not considered full time work, it is a step on the road to employment.

These projects are usually very short term, one to three days in length, and there is no guarantee there will be consistent work.  Every effort is made to accommodate all ICC’s with regard to their limitations and abilities.

If you are interested in becoming an ICC please contact Leslie Wish, program coordinator for Consumer Involvement,
 at 617-204-3771 or by e-mail: Leslie.Wish@mrc.state.ma.us.

Linda T. Hurd

I am an illustrator trying to promote insight into subjects such as Attention Deficit Hyperactivity Disorder (ADHD), learning differences, choices, and personal progress, and their impact on our lives and families. Through writing, watercolor paintings, and occasional humor, I present a unique way to see and talk about these dynamic topics.

My love of art came early, and I received tips from people along the way including my grandmother, my three sisters, and art teachers at Canton High School. I have a BA in Psychology from Eastern Nazarene College, Quincy, MA and an MA in Writing and Publishing from Emerson College, Boston, MA.

I hope you enjoy my work.  Painting helps me honor what I see. Painting with watercolors has helped me learn skills like sitting still, planning ahead, and going lightly. Painting and writing are therapeutic for me. I often learn something new.

Website: www.LindaTHurd.com
Email: ArtforMonths@yahoo.com

A publication of the MRC State Rehabilitation Council
Alan Greene, Chairperson
Charles Carr, Commissioner, MRC

Elaine McHugh, Editor

Contributing Writers
William Allen
Larry Espling
Betty Maher
Girard Plante
Louise Speck
Lisa Weber

MRC Staff Editors

Emeka Nwokeji, Director, Consumer Involvement
Sheila Wojdakowski, HR/Customer Relations
Leslie Wish, ICC Program Coordinator

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.

To receive the newsletter electronically, e-mail consumer.involvement@mrc.state.ma.us

http://www.mass.gov/eohhs/gov/newsroom/mrc/consumer-voice/ 

 

 


This information is provided by the Massachusetts Rehabilitation Commission.