A quarterly publication of the Massachusetts Rehabilitation Commission Consumer Involvement Program

Message from the Director, Emeka Nwokeji

On occasion I visit our local VR (Vocational Rehabilitation) offices, Independent Living Centers or other groups of persons with disabilities. I almost always get into a discussion about consumer involvement and how important it is in assisting the Agency and the Commissioner in determining how services are provided.

I thought about these meetings and felt that I ought to take an opportunity through this edition of the Voice to explain the history of consumer involvement and how it has changed. In the very early days of the program the Agency established the concept that persons with disabilities ought to be involved in advising MRC on how its programs and services are operated. Commissioner Bartels brought this revolutionary concept to MRC and asked Moro Flemming to direct this new part of MRC.

Moro set about to establish local and regional advisory councils and staff the Statewide Advisory Council for the Agency. Over the years the number of local advisory councils grew and Moro also established the annual consumer conference. Moro was a great advocate for the concept of consumer involvement but in 1991 Moro passed away after a long battle with cancer.

I was hired in 1992 and the Commissioner helped me to understand how important his vision of consumer involvement was and that I should give some thought on how to further expand it. After much thought and discussions with many different people including past Rehabilitation Advisory Council Chairs it became clear that we needed to change the way the Council meetings were held. It was decided that the meetings should be rotated throughout the different regions of the state. By doing this, persons with disabilities could come to the meeting and see how important MRC valued the input of individuals with disabilities. This shift in the way the Council does business has had a significant impact on the ability to get input from consumers.

In 1996 the federal legislation that provides funding for the Vocational Rehabilitation Program changed to give people with disabilities more responsibility through their involvement in the establishment of the State Rehabilitation Council. Congress recognized that persons with disabilities should play a more important role in the way services are provided by state rehabilitation agencies so they gave more responsibility to councils. Massachusetts changed the name of its council from the Rehabilitation Advisory Council to the State Rehabilitation Council. This change reflects Congress' desire to ensure that persons play a more prominent role in policy development.

Another major change occurred about two years ago. Bill McCarristion, the present Council Chair agreed that a part of the meeting be set aside for those attending the meeting as visitors to have an opportunity to speak to the Council directly. This "Open Mike" session sets aside time in the afternoon after lunch for visitors to speak to the Council and the Commissioner about any issue relating to MRC programs and services. Sometimes there is very little said. Other times, lively discussions about current topics occur and they are almost always helpful in assisting MRC.

There are also other major changes in the way the Council operates including the extensive use of an executive committee, and many other standing committees which address various areas such as Consumer Satisfaction and the like.

The Council is now composed of 20 members appointed by the Governor and 15 ex-officio members who represent the regional and area advisory councils. MRC is always looking for new members for the Council so if you are interested in becoming a member you can call me at 617-204-3624 or email me at emeka.nwokeji@mrc.state.ma.us. I hope this journey through the past has given you a better idea of how important the State Rehabilitation Council is and how important your participation is to the way MRC provides services.

Update: MRC received over $4 million additional federal dollars to provide VR services to Massachusetts' citizens with disabilities. More to follow.

MASSACHUSETTS LAUNCHES PUBLIC CAMPAIGN TO END MENTAL HEALTH STIGMA
By Cyndi Roy, STATE HOUSE NEWS SERVICE, SEPT. 30, 2004

Paula Fisher was by most accounts a successful, happy individual. A graduate of Bryant University with a bachelor's degree in accounting, she spent 20 years working as a payroll manager for a Fortune 500 company. Then, in 1993, Fisher was hospitalized with the first of many bouts of severe depression. Unable to overcome her illness despite numerous hospital visits, Fisher left her job, and was isolated by her family. "I felt the stigma of mental illness from my family," Fisher said at a press conference here today, kicking off Mental Illness Awareness Week. "They told me to just pick my chin up and go to work. When I was well, I was welcomed. When I experienced the worst, my family could not be there for me."

Today, Massachusetts is one of eight states working to combat the stigma and discrimination that surrounds mentally ill patients through a federal pilot program that includes TV, radio and print ads highlighting the commonness of mental illnesses.

The goals of the campaign are to encourage those who may have symptoms to feel comfortable seeking help and to demystify mental illness by giving the public a better understanding of its prevalence.

Because of the negative conclusions some people draw about those with diseases like depression, schizophrenia, and bipolar disorder, many individuals avoid treatment and hide their symptoms, state Department of Mental Health Commissioner Elizabeth Childs said. "We hear the numbers, we read the statistics, but the fact is, mental illness affects nearly every family in America," Childs said. "Stigma remains the most significant barrier to people seeking treatment for mental illness."

California, Florida, North Carolina, Ohio, Pennsylvania, Texas, and Wisconsin are also participating in the Elimination of Barriers Initiative, a three-year program launched in September 2003 by the Substance Abuse and Mental Health Services Administration. Nearly one out of every five Americans has some form of mental illness, according to Lester Blumberg, chief of staff to Childs. And nearly every individual knows someone who is afflicted, he said.

In addition to a public awareness campaign, Massachusetts has chosen four public schools to participate in the program. Staff from the Department of Mental Health and the Massachusetts Association of Mental Health will train teachers at Malden High School, Ashland High School, Natick High School, and Jeremiah Burke High School in Boston to recognize the symptoms in teenagers, and help them cope with the disease, Childs said.

"High school is when the brain makes its decision to turn around," said Ken Duckworth, medical director for the National Alliance for the Mentally Ill. "Nearly 80 percent of adolescents with emotional disorders get no care at all."

At the end of the third year of the program, pending an evaluation, SAMHSA will distribute evidence-based public education practices to other states that can use the information in their schools. Today, Paula Fisher is on the road to recovery. She is a member of the Crossroads Clubhouse, an institution that provides support for individuals with mental illness. October marks two years since she has had a "breakdown," and she works part time at a department store in Milton.

"I've had my ups and downs, but today my glass is half full," she said.

MASSACHUSETTS COMPREHENSIVE ASSESSMENT TESTS (MCAS)
Excerpts Provided by Mass. Advocacy Center, MCAS Disability Hotline

MCAS is the statewide test, required for high school graduation, based on the State Curriculum Frameworks, developed to measure the results of education, and hold schools accountable. The Curriculum Frameworks are used by school districts across the state to define that which students should be learning and teachers should be teaching. Federal Law requires that students with disabilities be taught the subjects in the Curriculum Frameworks.

MCAS is a "high stakes" test. A student's IEP (or 504 plan) must describe specific services and programs your child needs to learn the subject areas covered by MCAS. The types of questions on the test include: Multiple Choice; Open Response; Short Answer; Essay (Writing Prompts).

The Team must decide if the student should participate in MCAS under routine conditions or in the Test with Accommodations.

Students with disabilities, who can take the standard MCAS without accommodations in a given subject area, are expected to do so. Some students need accommodations to have a fair chance to show what they know and pass the test.

Some examples of accommodations are:

  • Multiple Testing Sessions
  • Testing in Periods of __Minutes Followed by Rest Breaks of __ Minutes
  • Mark Answers in Test Booklet
  • Small Group or Individually
  • Fewer Items Placed on Each Page
  • Large Print
  • Use of Assistive Technology
  • Physical Assistance for Tracking
  • Student Cued to Remain on Task
  • Use of a Reader or Scribe To Take Notes For Student in Classroom
  • Use of a Sign Language Interpreter
  • Use of a Spell-Check Device
  • Use of a Calculator

If the student needs to participate in an alternate assessment: the alternate assessment is a "Portfolio" Assessment. This Portfolio is a body of evidence consisting of work samples, photo, video, audio, instructional data (primary evidence) that is collected over many months.

Participation in MCAS

Federal Law requires that all students with disabilities participate in MCAS and all district-wide tests. Federal Law requires that school districts provide the Special Education Services the child needs to learn the material covered by MCAS.

Federal law requires the Individualized Education Plan (IEP) Team (or 504 Team) to meet before MCAS Testing. If it is not explicit in the IEP, the student may not get the necessary accommodations. For those students who were close to passing, the State has a limited Appeals Process.

Before the Student Takes the Test

Make sure the child's IEP describes instruction and services necessary for the student to learn the material covered by MCAS:

  1. Check the student's IEP (Page 7) or 504 Plan to ensure he/she is receiving the accommodations (or alternate testing) he/she needs;
  2. Set up a Team meeting to discuss his/her participation before testing begins;
  3. Make sure there is enough time in case the Team cannot agree on how the student should participate;
  4. Prior to the Team meeting, make a list of accommodations that the student will need, and bring a draft to the Team meeting;
  5. Think about accommodations provided in the classroom or for homework assignments;
  6. Be very specific about how the accommodations are written in the IEP.

If the Student Performed Poorly on MCAS

  • Review MCAS Scores at the Team meeting.
  • Discuss adding services/supports to the student's program to improve learning of the Curriculum Frameworks to improve MCAS performance.
  • Discuss whether it is necessary to add or change MCAS Accommodations provided to the child's IEP to improve test scores.
  • Consider MCAS Remediation Programs offered in school or outside of school, and ensure the student receives necessary accommodations to take part in these programs.
  • Review his/her homework, tests, progress reports, and keep copies to compare what the student is learning, compared to what is being tested in the MCAS.
  • Review the Curriculum Frameworks to become familiar with what he/she should be learning.

ELDER AGENCY JOINS NETWORK OF INFORMATION PROVIDERS FOR PEOPLE WITH DISABILITIES
By Kathy Stimson

Adults of any age who are living with a disability can now call Springwell for free information and referrals to disability-specific services. Springwell, the Area Agency for residents of Belmont, Brookline, Needham, Newton, Waltham, Watertown, Wellesley and Weston is now a member of The Massachusetts Network of Information Providers for People with Disabilities (MNIP). The MNIP, coordinated by New England INDEX, is a collaborative effort of over sixty nonprofit agencies in Massachusetts. Network members disseminate disability-specific information and make referrals to the public for free. Consumer contact with any of the member agencies provides access to the expertise of the entire network.

Springwell has provided free elder care-specific information and referrals to the public for over 25 years and will continue to do so, in addition to now providing assistance with disability-specific questions. For free information and referrals to services for elders as well as adults with disabilities, call Springwell's Information & Referral Department at 617-926-4100 between 8am and 5pm Monday through Friday. The Information and Referral Department can also be contacted via email at inforef@springwell.com.

SPECIAL ED SERVICES PROGRAMS UNDER THE NEW LAW-Free And Appropriate Education (FAPE)

The law requires parent or guardian involvement in the Special Education Process. Caretakers are key players in developing an IEP.

  • Compare the Service Delivery Grid (Page 5 of the IEP) from the previous year with the Proposed IEP to note any changes to the services offered to the student. If the student did not pass MCAS, make sure the IEP Team considers other services or programs.
  • If the child's IEP goals and objectives are the same year after year, he/she may not be getting appropriate services under "Free and Appropriate Education" (FAPE). The Federal Law provides new legal tools to advocate for the Special Education Services a student needs, to improve educational results, and pass the MCAS. FAPE is the federal service standard used to determine the quality and amount of services the school must provide to the student. FAPE provides for a full range of services.
  • If the parent or guardian feels that the student is not receiving the appropriate education, or not receiving necessary services to pass MCAS, the Team meeting can be reconvened.
  • New strategies can be developed to help the student in the classroom, and in taking the MCAS. Caretakers can also request School Evaluations or Independent Evaluations, if they have concerns.
  • Schools cannot legally reduce or deny services for the child, or for a group of students, based on the new state standard (FAPE). If this is an issue for a child or children that you know, please call one of the resources listed below for more information. Make sure the IEP Team only considers the child's needs.
  • Parents or guardians should take someone with them to their Team meeting to take notes. They should read the IEP before signing it to make sure it has all the services that was agreed to during the Team meeting. No signing should take place at The IEP meeting. It should be reviewed later. Parents or guardians have the right to an Independent Evaluation, if they are not satisfied with the testing done by the school.

The Federal Law provides new legal tools to advocate for the Special Education Services a student needs in order to improve educational results, and pass the MCAS.

School Districts must act on all parent requests for Special Education Testing. Testing should be completed within thirty school days.

If you have questions or concerns about your child's participation in MCAS, please call the Massachusetts Advocacy Center's MCAS Hotline at: Voice (617) 357-8431, X234.

If you think your child's rights are being violated, or you need basic rights info, you can call the organizations below:

  • The Massachusetts Advocacy Center (617) 357-8431
  • The Federation for Children with Special Needs (800) 331-0688
  • The Disability Law Center (617) 723-8455

FUNDING FOR THE HIGHER EDUCATION ACT (HEA) (TO HELP STUDENTS WITH DISABILITIES IN POSTSECONDARY ED-AFTER HIGH SCHOOL)
Provided by: Lex Frieden

The funding authorization for programs in the Higher Education Act (HEA) of 1965 will expire during the 108th Congress. In preparing to reauthorize HEA, it is important to focus on the positive outcomes that have been reported for youth with disabilities, and to expand and enhance the strategies and practices that are known to improve outcomes. To guide Congress on disability-related HEA Reauthorization Issues, the National Council on Disability (NCD) published a paper, People with Disabilities a Postsecondary Education, which can be accessed at http://wwwncdgov/newsroom/publications/2003/education.htm. NCD's Paper highlights the challenges for students with disabilities in the nation's university systems, and recommends solutions that would result in better support systems for postsecondary students with disabilities.

The Issues: Education is the key factor in achieving employment, and thus an enhanced quality of life for people with disabilities.

Students with disabilities, who now are estimated to represent nearly 10 percent of all college students, currently experience postsecondary outcomes far inferior to those of their non-disabled peers. While federal law requires a full array of supports and services for students with disabilities through their high school years, there is little that has prepared them for the barriers and lack of adequate disability related supports and services they will face in university systems.

Several interrelated issues impact student preparation and access to postsecondary education:

Transition to Postsecondary Education: Students often lack advocacy skills, knowledge of how their disability will impact their education, and an understanding of how to negotiate services in postsecondary settings.

Many academic and career counselors lack the necessary skills to provide guidance to students with disabilities.

Student Progress in Postsecondary Education: The retention rates of students with disabilities in postsecondary education have been considerably low (Stodden, 2001). This is due to the lack of supports, inconsistent interpretations of accommodation requirements, and lack of awareness on the part of faculty members regarding disability issues.

Financial Aid Barriers: Many students with disabilities are faced with greater costs than those without disabilities. Many students with disabilities are forced to pay for disability-related accommodations themselves. They may also require an extended period of time to complete their degree, which increases the final cost of their education. Most students with disabilities are not aware that their financial aid packages can be increased to match their out-of-pocket disability related expense calculations, as required by HEA.

Fragmentation and Inconsistencies: The problems in service provision, differences, and emphases among educational institutions and service agencies result in varying information being provided to students with disabilities.

NCD Recommendations: The following recommendations are designed to help policy makers attend to the gaps in the knowledge, practices and policies involving people with disabilities in postsecondary education, and to build on the progress already made to create a seamless system to improve the educational outcomes for all students with disabilities.

  • Improve access to postsecondary education through the formation of a federal commission. A federal commission is needed to investigate and resolve discrepancies and issues across secondary and postsecondary institutions, and to study and develop solutions for systemic transition problems for students with disabilities.
  • Improve access to postsecondary education by providing information on Postsecondary Educational Support Provision. A national Web-based Assessment Center and Register of organized data and information on disability supports and services is recommended to enable students and families to better anticipate what supports and services will be needed, and whether they are available, in postsecondary settings.
  • Improve participation and persistence in postsecondary education through formation of a National Technical Assistance Network. A national network of technical assistance centers should be established to assist faculty and disability support programs in postsecondary education settings, and to provide effective practice models, training of faculty and support personnel, and technical assistance to programs and people with disabilities.
  • Improve financial aid for people with disabilities in postsecondary education with new flexibility amendments to the Higher Education Act. These are needed to remove barriers to financial aid for students with disabilities, and to provide funds for research, demonstrations, and training on disability-related financial aid issues.
  • Address emerging needs through targeted personnel preparation and research postsecondary education. Personnel preparation should include research and training on disability-related supports and services, and should emphasize recruiting, educating and providing accommodations to teachers with disabilities.

To address the numerous barriers and gaps in knowledge that remain, the Reauthorization of the Higher Education Act should contain a mandate to conduct evidence-based research that will yield a clearinghouse for the collection, classification, and ongoing dissemination of data regarding the status of people with disabilities in postsecondary education and subsequent professional employment.

For more specific information on this article, please refer to the: NCD Youth Advisory Committee Paper, Students with Disabilities Face Financial Aid Barriers, www.ncd.gov/newsroom/advisory iyouth/yac_aidbarriers.htm.

Difficulties in Interagency Collaboration: http://www.ncd.gov/newsroomipublications/2004/hea_factsheet.htm 51J

Or contact Lex Frieden, Chairperson
National Council on Disability
1331 F Street, NW, Suite 850, Washington, DC 20004
Voice: 202-272-2004
Fax: 202-272-2074
TTY: 202-272-2022


ROAD AND WEATHER CONDITIONS FOR LONG AND SHORT TRIPS
By Jeanne Boland

Road Conditions

Traveling this year should be easier if you know the traffic, road, and upcoming weather conditions.

Visit the helpful website at: www.usroadconditions.com for the most current information.

The Federal Highway Administration also posts information on their website regarding road closures, traffic and weather-related traveling information. Visit: www.fhwa.dot.gov/trafficinfo/index.htm#WEAT.

Weather Conditions
The website: www.accuweather.com provides a wealth of information for the traveler and "homebody", as well as the amateur weatherman, who likes to follow the clouds overhead, like our family.

This site will provide travelers with weather around the country, and their local area, keeping weather safety in mind, while traveling.

WEATHER FOR FUN
As a special bit of fun, www.accuweather.com, has two FREE WEATHER LINKS to Weather Bug and Free Weather.com, which can be downloaded to the computer desktop very easily with a simple click.

Both sites provide the Weather Watcher an inside eye to the skies for travel, weather alerts on a very timely basis, pictures of the skies at local spots, and fun tidbits of information for the family, curiosity seeker, student, budding meteorologist, kids learning science, or anyone.

Happy Surfing and Happy Trails!!!

ANNOUNCMENTS

The LIFE Center, located at the Hamilton Wade Apartments, 54 Haverhill Street, Brockton, was established as a non-profit organization for individuals with all types of physical disabilities to come together for friendship, support and socialization. Important functions of the center include providing information, referral and advocacy assistance for members needing help in obtaining medical, social and legal services, public benefits and entitlements, housing, etc.

In addition, the center offers a wide variety of programs for your health needs: blood pressure screening, educational programs, exercise, health screening, medical equipment exchange, snack and lunch programs and commodity food distribution.

For your pleasure: arts and crafts, bingo, card and board games, ceramics, cribbage, knitting, crocheting, wheelchair bowling, dinners parties and monthly trips.

New members welcome from all surrounding towns.The Center is open on Tuesdays and Thursdays 10 a.m. to 3 p.m., and Wednesdays from 10 a.m. to 1:30 p.m.

Want to save money on your phone bill?????

For more information, Contact Rae Zuckerman, Executive Director, LIFE, Inc. P.O. Box 2356 Brockton, MA 02305


FOR MEN OF AFRICAN DESCENT!!

WHEN: Every 2nd Friday of the Month
TIME: 11 a.m.-until…
WHERE: 10 Northampton St., Boston, MA
(between Harrison and Albany Streets, 1 block below Mass Avenue near the Boston Medical Center)

Every 2nd Friday of the Month, free medical check ups will be available for Black Men free of charge. A team of doctors will be available to see you and address your medical concerns. You no longer need to put off medical problems.
Come and get the medical attention you need and deserve!

DON'T PUT OFF GETTING THE HEALTH CARE YOU NEED! IT'S FREE…NO ONE IS TURNED AWAY! PRIVACY IS ASSURED!

For more Information contact:
Union of Minority Neighborhoods at 617-989-8078
Health Care for All at 617-275-2936

Sponsored By: Union of Minority Neighborhoods, Health Care For All, The Boston Brotherhood, City Councilors Chuck Turner, Felix Arroyo, Mike Ross, State Senator Dianne Wilkerson and the Massachusetts Jobs with Justice Campaign

MOVED! Asperger's Association of New England:

The new address is 182 Main Street, Watertown, 02472. Phone (617) 393-3824. Entrance to the office (elevator and stairs) is from Green Street. The office is a few minutes walk west down Main Street from Watertown Square. Although not as "homey" as the present office space, this new space is handicapped accessible, climate controlled and a few minutes walk to public transportation from Cambridge, Boston, Needham and Waltham. Street and lot parking is available. Please feel free to visit.

MRC Annual Report

We are pleased to announce that the 2003 Annual Report of the Massachusetts Rehabilitation Commission is now available for reading or downloading at the following site: www.mass.gov/mrc/agency/2004/ar2003.htm


CALENDAR

THE COALITION FOR THE LEGAL RIGHTS OF PEOPLE WITH DISABILITIES (CLRD)
By Jennifer Honig, Staff Attorney

DATES: November 16, 2004
January 18, 2005
March 22, 2005
June 7, 2005

TOPIC: The Coalition for the Legal Rights of People with Disabilities (CLRD) Regular Meeting to promote the empowerment, liberation, and integration of all people with disabilities in Massachusetts. CLRD meets regularly in Downtown Boston.

To receive a copy of the CLRD Newsletter: send your name, address, voice and fax phone, and e-mail to:

CLRD Newsletter
C/o Disability Law Center
11 Beacon Street, Suite 925
Boston, MA 02108
Fax: (617) 723-9125

If you have questions about CLRD Membership or the Newsletter, please contact Joanna at:
Voice: (617) 723 8455, x120 or E-mail her at jjefferson@dlc-ma.org.

You may also contact the author of this article: Jennifer Honig, Staff Attorney, Mental Health Legal Advisors Committee
294 Washington Street, Suite 320
Boston, MA 02108
Voice: (617) 338-2345, x25
Fax: (617) 338-2347
E-mail: Jennifer.Honig@state.ma.us

VSA INVITATION TO A CONFERENCE

TOPIC: VSA Arts of Mass will host a day-long conference "Putting Creativity To Work: Careers in the Arts for People With Disabilities"
DATE: November 9, 2004
TIME: 9:00 a.m. to 5:00 p.m.
PLACE: Radisson Hotel, Boston, MA

For more details or registration information, please contact:
Bonnie S. Kaplan
Director of Cultural Access
VSA Arts of Massachusetts
2 Boylston Street, #211
Boston, MA 02116
Voice: (617) 350-7713
TTY: (617) 350-6535
E-Mail: BSK@vsamass.org
www.vsamass.org
www.accessexpressed.net

State Rehabilitation Council Regional Meeting
 Date: November 18, 2004
Time: 10:30-3:30
Location: TBD
For more information contact Emeka Nwokeji at: 617-204-3851

LET'S NOT FORGET!!!!!!
The Selection Committee is seeking nominations for the year 2004
Moro Fleming Award
Make sure you submit yours as soon as possible.
The nomination forms have been mailed out and are also posted on our website for your convenience.
You may also call 617-204-3851 to request copies.

SAVE THE DATE!!
MRC 24th ANNUAL CONSUMER CONFERENCE 2004
WEDNESDAY DECEMBER 1, 2004

Conference details and registration at http://www.mass.gov/mrc/consumer/conference.htm

For further information contact Emeka Nwokeji, Director of Consumer Involvement Programs at 617-204-3851.

¡POR FAVOR CONSERVE LA FECHA!
24ta. CONFERENCIA ANNUAL DEL CONSUMIDOR DE MRC 2004
MIÉRCOLES, 1 DE DICIEMBRE DE 2004
"PROMOVIENDO EL LIDERAZGO A TRAVÉS DE LA INDEPENDENCIA, El EMPLEO Y LA VIDA COMUNITARIA"

Para información adicional, escriba al correo electrónico: consumer.involvement@mrc.state.ma.us

(617) 204-3851 voz, (617) 204-3868 TTY

The Consumer's Voice

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: Joslaine Vital (ICC), Anne Guterman (ICC), Jeanne Boland (ICC) and Leslie Wish (ICC)

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.