CLA is New P&A 

Emergency Management

The Plan for Inclusion 

Free Service from DOE

Youth Leadership 

Priced Out   

NICHCY   

Crime Victims

The Riot   

Internet Resources

 

Get Ready for The Arc of North Carolina's Annual Convention!

The Marriott Hotel at the Civic Center

Durham, NC

September 14-15, 2007

There will be great keynotes, the annual awards dinner and informative breakout sessions. Get ready to meet fellow advocates, family members, self-advocates and others to have a great time and learn about educational issues, supports for people, effective advocacy and so much more.  Turn to the next page or visit the convention web page http://www.arcnc.org/information/convention.shtml

Paving the Way... it is what The Arc has done throughout its history!  People with disabilities and their families deserve person-centered supports, inclusive education, competitive employment, and options for community living that promote dignity and respect.

At the 2007 conference, The Arc plans to Pave the Way... towards inclusive community life, offering speakers and sessions that will propel us all forward in our thinking and in our advocacy.

Opening Keynote by Al Condeluci, CEO, UCP of Pittsburgh/CLASS

Building Community from the Inside Out

The challenge of inclusion rests with not only understanding culture and community, but also finding ways within the culture for meaningful participation.  Historically, people with disabilities have been kept apart from community.  This exclusion has set a tone for the greater community that people with disabilities are better off in their own space.  This presentation takes an active look and community and relationships with an effort toward building a community where each belongs.

Saturday Morning Keynote by Denise Ryan, FireStar Speaking 

Ladies and Gentlemen Start Your Engines!

Fasten your seatbelts, folks as Denise takes us all on a wild ride! Wake up, get motivated and conquer those fears because enthusiasm and fear cannot occupy the same mind. Denise, the chief firestarter of FireStar Speaking, will get our engines revved up with her dynamic, humorous and thought-provoking session. Denise has re-energized thousands of people; waking them up to their full potential and helping them get everything they can out of their lives and their work.

Does Your Child’s IEP Need a Tune-UP?

Then Sign Up for IEP Roadside Assistance

Bring your questions and your child's IEP and meet privately with a parent educator from The Exceptional Children's Assistance Center (ECAC) ECAC Parent Educators can suggest ideas for improvement, offer troubleshooting tips, and share information and resources. Details will be in the convention registration.

GOOD FRIENDS ARE........JUST WAITING TO HAPPEN

Judy Lewis, Volunteer Coordinator, The Arc of NC Guardianship Program

They could have been just "two ships passing in the dark"-----however, The Arc of NC Guardianship Program came along and shined a light on that big dark sea. 

First, is Fred Benson, an attorney in Charlotte and then there is Asbury, part time bagger at Food Lion in Charlotte.  Now Charlotte is after all a pretty big place and the chance of these two getting together would have been pretty slim.  But then, like a beacon light on that big dark ocean------shines the light of The Arc of NC Guardianship Program and a long lasting relationship emerges.

I was lucky enough to be friends to each of these individuals.  After meeting Asbury, I immediately thought of Fred Benson.  Fred is just an all around great guy who serves in our community and state in so many ways as a volunteer.  Because he is such a great volunteer and also is an attorney, I hesitated to ask him for yet "another volunteer favor" knowing that his schedule is so very busy.  However, I did ask and he agreed to meet Asbury.  We went over to Asbury’s apartment one night and after meeting Asbury, Fred said "yes"..  That was November 2002.  That was over four years ago and their friendship is going strong. 

I met them for dinner some time later and asked the two of them about their relationship through The Arc of NC Guardianship Program and this is what they had to say;

 Question to Asbury:  How has knowing Fred changed your life?   His reply was "It has changed my life a bunch.  I am a friendlier person now and I don’t get bored like I used to.  Fred is a good guy and a great friend."

 Question to Asbury:  What kind of things do you guys do together?  His reply was "We go out at least every two weeks.  We go to functions at The Arc, out to eat, bowling, bingo, movies, checkers Games and the Moose Club Dance."

Question to Fred:  How has knowing Asbury changed your life?  His reply was " I get out more now.  We go out and have a good time and talk about a lot of things especially geography and travel and which cities are largest and etc."

 Question to Fred:  What have you learned from knowing Asbury?  His reply was "How people with developmental disabilities can live independently".

Since knowing Fred, Asbury has begun to eat a little differently also (even some green vegetables).  And Asbury proudly announced to me that he has "stopped chewing tobacco".  When I asked him if it was hard to stop he said "no".  I asked him how did he stop and he said "I prayed about it".   Through Fred's advocacy, Asbury moved to a different apartment which Fred felt would be safer for him.  And, he recently moved into a house and had a very nice open house party. 

Some of Asbury"s dreams are to some day own a condominium and he would also like to have a housekeeping job.  You can bet that Fred is aware of his dreams and will be right along side of him helping to make them come true.

 CAROLINA LEGAL ASSISTANCE DESIGNATED AS NORTH CAROLINA'S PROTECTION AND ADVOCACY SYSTEM

 North Carolina's Protection and Advocacy System was recently redesignated to Carolina Legal Assistance (CLA).  CLA will assumed the protection and advocacy responsibilities on July 2, 2007.  These services were previously provided by the Governor's Advocacy Council for Persons with Disabilities (GACPD), a division of the N.C. Department of Administration.  This action was taken at the request of the disability community and after consulting with the GACPD governing board. Feedback determined that advocacy services can be provided more efficiently and effectively in an independent agency.  CLA is independent of the state and will be exclusively responsible for advocating for people with disabilities in North Carolina.  For more information visit the CLA website. www.cladisabilitylaw.org

 DISABILITY & ELDERLY EMERGENCY MANAGEMENT (DEEM) INITIATIVE

 The Division of Aging and Adult Services is pleased to announce the Disability & Elderly Emergency Management (DEEM) Initiative.  The DEEM Initiative is a multi-agency approach for strengthening the ability of our State and communities to help seniors and persons (of all ages) with disabilities to prepare for, respond to, and recover from man-made or natural disasters.  The project is currently collecting information and recommendations that will be consolidated into a State plan and presented at a western and eastern summit later this year or early next year.  For more information and to give your input visit their website at: www.dhhs.state.nc.us/aging/deem.htm 

UCP Releases New Medicaid Report: The Plan For Inclusion

 UCP has just released The Plan for Inclusion, a menu of policy options and tactics designed to work in tandem with The Case for Inclusion, a recently released UCP report which ranks and analyzes how states are serving Americans with intellectual and developmental disabilities under Medicaid. The UCP state ranking data sheds light on areas where your state is underperforming while The Plan for Inclusion offers suggestions for action.

 The Plan is intended to help advocates:

1. Understand the unique challenges within their state

2. Communicate that information to policy makers, state administrators, the media and key stakeholders:

3. Prioritize areas needing attention; and

4. Match priority areas with action steps that have proven effective in other states.

 Because every state is different and states vary greatly in their success in providing community-based supports to people with intellectual and developmental disabilities, there is no one silver bullet. Every state has room for improvement and The Plan for Inclusion can be a resource to advocates as they create or review a work plan for change. 

The full text of The Plan for Inclusion, the full text of The Case for Inclusion 2007 (UCP's state Medicaid rankings and analysis) and state-by-state data are available at www.ucp.org/medicaid. 

 A Free Service for Students who are Deaf, Hard of Hearing, or Deaf-Blind 

There is a free service for students who are deaf, hard of hearing, or deaf-blind. The Described and  Captioned Media Program (DCMP) http://www.dcmp.org/ is funded by the U.S. Department of Education to provide free-loan described and captioned educational media and also act as a clearinghouse of information about accessible media.

Newsletter from The National Youth Leadership Network

The newsletter is a created by young people, for young people. We hope it will be a source of information and entertainment for you. If you have any ideas of stories that we should cover or topics that we should write about, please let us know! The newsletter can be found at: http://nyln.org/newsroom/newsletter/Newsletter_Spring_06.htm

New Report Underscores Housing Crisis Facing People with Disabilities

Priced Out in 2006 documents the continued lack of affordable and accessible housing for people with long-term disabilities, including intellectual disabilities, physical disabilities, chronic illness, and mental illness. The national average for a one-bedroom apartment is at $715 and a studio/efficiency is at $633, and both are higher than the entire monthly income of people with disabilities who rely on the Supplemental Social Security Income (SSI) program. The report is published by the Technical Assistance Collaborative and the Consortium of Citizens with Disabilities, and is available to read and download at http://www.tacinc.org/Pubs/PricedOut.htm. 

 June News from NICHCY

  Here's a sample of what you'll find:  

• IDEA 2004 Part C Proposed Regulations issued.
• English and Spanish versions of:  Opening Doors: Technology and Communication Options for Children With Hearing Loss, from the Office of Special Education and Rehabilitation Services.
• New RtI Article on Early Intervening Services, from Project Forum.
• Additional reports on Beginning Reading and English Language Learners, from The What Works Clearinghouse, and...
• Conferences galore, too many to choose from! Check out what's happening this summer and make your plan.

 Read all about it and more, at: http://www.nichcy.org/newsuse.htm  

Oh, and don't forget about NICHCY's training modules on IDEA 2004. More are comin' all the time, all through the summer. See what's available for download, at: http://www.nichcy.org/training/contents.asp 

 Breaking the Silence on Crime Victims with Disabilities

 Breaking the Silence on Crime Victims with Disabilities-Addressing the long-neglected needs of crime victims with disabilities is the focus of a new partnership announced today by the National Council on Disability, the Association of University Centers on Disabilities, and the National Center for Victims of Crime.

 The ultimate goal of this partnership is to foster greater public awareness about crime victims with disabilities and to forge a national commitment to better serve this particularly vulnerable population. More information can be found at: www.ncd.gov/newsroom/news/2007/crime_victims.htm

 The Riot Website Revamped!

Dear Riot Readers,

Please take a look at our new website!  We hope that you like it.  It has a sharper look and is easier to use.  Go to:  www.theriotrocks.org 

On the site, you can easily find your way around.  Look at the current issue of The Riot!  Find old issues.  Write Cubby for love advice.  Get a Riot! t-shirt.  Help us out with a donation.  Send us your ideas or comments.                                                                                             

Send this link to your friends.  Tell them that they can sign up for free to get The Riot!. 

 The Riot Staff 

Resources on Self-Advocacy and the Internet

http://www.aina-ri.org/ This is the web site of Rhode Island's statewide self-advocacy organization Advocates in Action.

 http://www.selfadvocacy.com/ ‘"Advocating Change Together (ACT) is a nonprofit disability rights organization run by and for people with developmental and other disabilities. We are committed to freedom, equality, and justice for all people with disabilities."

 http://www.fvkasa.org/  "Kids As Self Advocates (KASA) is a national, grassroots network of youth with special needs and our friends, speaking on behalf of ourselves. We are leaders in our communities, and we help spread helpful, positive information among our peers to increase knowledge around various issues. We are an organization created by youth with disabilities for youth to educate society about issues concerning youth with a wide spectrum of disabilities and special healthcare needs. KASA believes in supporting self-determination, creating support networks and proactive advocacy for all youth with disabilities in our society."

http://www.hsri.org/leaders/ The Self-Advocate Leadership Network is a team of self-advocates and professionals who will travel anywhere to train others on self-determination, community integration, participant-driven supports, and systems change. The purpose of the Leadership Network is to prepare self-advocates to play a leadership role in guiding developmental disabilities systems change in ways that promote self-determination, community integration, and participant-driven supports. 

http://www.SelfAdvocateNet.com/  "This is the home page of the SelfAdvocateNet. We are based in the lovely Fraser Valley of Beautiful British Columbia, Canada. Recently we have begun networking across our region. The region is quite large, about 50 kilometers from one end to the other. We have worked hard to develop this web site as a way of staying in touch not only across our region, but across the province and the world beyond.."

http://www.sabeusa.org/  "OUR MISSION: To ensure that people with disabilities are treated as equals and that they are given the same decisions, choices, rights, responsibilities, and chances to speak up to empower themselves; opportunities to make new friends; and to learn from their mistakes."

http://indie.ca/roeher A Straightforward Guide to the Internet: This guide provides a basic introduction to the Internet. It is written in plain language, with lots of images. Produced in an easy-to-read, larger than usual format, A Straightforward Guide to the Internet is divided into short manageable chapters. It explains what the Internet is, how you get connected, what e-mail is, and how to "surf the net." 

http://www.ctserc.org/library/bibfiles/self–determine02–03.pdf This is a comprehensive bibliography on self-determination and self-advocacy. It contains two sections: (a) references to journal articles, books, instructional materials, and inservice educational material; and (b) a variety of web sites.

 Until next time…………….The Arc Works!

Are you a member of The Arc? If not, please consider joining.  Click Here to find a local chapter serving your area. If not, call 1-800-662-8706 and join The Arc of NC.

YOUR membership makes a difference in the lives of North Carolinians with intellectual and related developmental disabilities.

When you join a local or state chapter of The Arc you also automatically become a member of The Arc of the United States. See all The Arc of the United States has to offer at www.thearc.org

The Arc Works! is a publication of The Arc of North Carolina. The Arc Works! offers readers information about products, services and/or agencies that may be of interest to readers, however The Arc of NC does not endorse specific products, services and/or agencies.

Print The Arc Works!                                                                 January 2007         

Welcome to The Arc Works! An electronic publication of The Arc of North Carolina. This publication will bring you up to date news, articles of interest and information about upcoming events. We welcome your suggestions as to how we can improve this newsletter. Send comments to Lguzman@arcnc.org. Simply scroll down to read the entire newsletter or click on the links below to specific articles that interest you.

Parents as Providers           GACPD         

Restoring Rights                  Pioneers                               

AAMR is AAIDD                  Without Apology

PBS Documentary               Upcoming Trainings and Events

Parents/Guardians as Providers

At the January 10 Legislative Oversight Committee on Mental Health/Developmental Disability/Substance Abuse (MH/DD/SA), Allen Dobson Assistant Secretary of the Department of Health and Human Services (DHHS), informed the Committee that the Parents as Providers amendment is under review. As previously reported he said the implementation date was moved to April 1, but hastened to add that it was likely that date would be extended. He also told the committee they were working to find a solution to the issue of Guardianship.

 We interpret that to mean they want to find a method to allow parents to continue as Guardian but with more extensive oversight. As you have questions from families about changing Guardianship we would suggest that they delay until the Department releases their new plan. The Arc of NC will continue to advocate based on the Position Statement adopted by the Board of Directors on 12/9/06.

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GACPD to Move Out of State Government

Great News! The Governor has announced in writing his decision to re-designate the federally mandated state Protection and Advocacy Program to Carolina legal Assistance effective July 1st. This is the culmination of years of advocacy by the advocacy community and many of you. Read the Governor's Letter here.

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Restoring Rights: Chanine's Story

A Guardianship Specialist routinely needs to sign consent forms for a person supported by The Arc of NC's LIFEguardianship Supports and Services.  However, in a recent role reversal, a Guardianship Specialist needed to have a consent form signed by a person supported by LIFEguardianship so that we could publish this article. Chanine Mabina has graciously allowed us to share her story.

This positive turn of events was made possible on May 30, 2006 when Chanine regained some of her rights through a limited guardianship. Before the restoration of rights, the courts had determined that Chanine needed a full guardian of the person. This meant that someone else had the authority to make all of Chanine's decisions for her.

Chanine has made significant progress in terms of independence and self-determination.  During her lifetime, Chanine has lived in various settings.   As she and her team members worked to find a successful residential setting, Chanine had a simple and poignant request.  "I want a family." That wish came true nine years ago when Chanine moved into an alternative family living home in Greensboro. 

Since then, Chanine has developed a supportive circle of friends and others who she considers to be her family.  Given the progress made, a hearing was held with a Clerk of Court where Chanine, her support staff, and the Clerk of Court determined the limitation of full guardianship was not necessary.  Eventually, complete restoration of rights may be possible and Chanine is striving to meet this goal.

In 2003, limited guardianship was clarified in Chapter 35-A of the General Statutes of North Carolina in legislation sponsored by Rep. Jean Farmer Butterfield.  This legislation assisted in the transition from full to limited guardianship. It allows the court to grant limited guardianship in only certain aspects of a person's life, versus full guardianship that gives the guardian authority over all aspects of a person's life.

A guardianship capacity questionnaire developed by Carolina Legal Assistance was utilized in establishing and modifying guardianship.  The questionnaire assists in determining a person's ability and support needs in such areas as language and communication, health care, personal safety, employment, independent living, residential, civil liberties and finances.  

For more information about guardianship and limited guardianship, visit the Carolina Legal Assistance website at: http://www.cladisabilitylaw.org/. You will find information as well as forms and the capacity questionnaire on the site. You may also contact your local Clerk of Court. To find your Clerk, visit www.nccourts.org.

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Looking for Pioneers

At the Beach Center on Disability we are getting an increasing number of requests from families from around the country who have sons and daughters with significant intellectual disabilities who are transitioning from high school or who are young adults.  These families very much want to create innovative supports that will enable their son or daughter who needs extensive and even pervasive support to access funding that will enable him or her to have their own home, have a real job, have friends, and have preferred places to hang out in the community.  I am sure that this request is very familiar to you and the DD Council network.

We are in the process of developing a Community of Practice that will involve finding "pioneer families" who have "beat the odds" in setting up the supports for their son or daughter to have a joyful, inclusive, and productive life.  As a first step, we want to find the pioneer families, hear their stories, learn what has worked, and organize information on a website that will be readily available to families coming along behind them.

We very much need help from The Arc network in locating the pioneer families.  We are hoping that you might put us in touch with families who meet the following criteria:

• Has a son or daughter with a significant intellectual disability who is over the age of 18.               

• The son or daughter, along with support from the family, has control over at least a portion of his or her Medicaid budget and is able to decide whom to employ and how much to pay each employee.

• Has found creative solutions to the complexities of community living associated with having a home, job, friends, places to hang out, and/or transportation. 

The person does not have to have all of these things in place but must have at least some component of their life that has worked especially well and from which other people can derive a vision and some "nuts and bolts" for learning how to do it.

If you know of any families who meet this description, we are hoping very much that you will do two things.  First, would you help us by contacting the family and asking if you can share their name and contact information with us?  If the family agrees, would you email that information back to me?  It would be helpful if you could provide several sentences describing why you think that they have a particularly helpful story to share.

Another option is that you could ask families who may be interested in being part of this network to contact us themselves. Our goal is to arrange a convenient time to have a telephone conversation and perhaps email exchanges with the family.  We will communicate with them in whatever way would be most convenient for them.  We welcome your ideas of how we might do the best job in organizing information that will be helpful to families in your state. 

Thank you so very much for being the "eyes and ears" for us in putting us in touch with pioneer families. We at the Beach Center are exceeding grateful to you for considering this request and hope very much to hear from you with the names of one or more families. If you have any questions, please feel free to contact Ann Turnbull by email turnbull@ku.edu or phone 785-864-7608.

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World's Oldest Organization on Intellectual Disability Has a Progressive New Name

The American Association on Mental Retardation (AAMR), a 130-year old association representing developmental disability professionals worldwide, has changed its name to the American Association on Intellectual and Developmental Disabilities (AAIDD),  establishing a new standard in disability terminology and making way for a more socially-acceptable way of addressing people with intellectual disabilities. The AAIDD is arguably best-known for officially defining the condition of mental retardation for the world, and its successful advocacy in abolishing the death penalty for victims with this condition in the United States. The name change will take effect January 1, 2007.

"This new name is an idea whose time has come," says Doreen Croser, Executive Director of AAIDD. "Individuals with disabilities and family members do not like the term "mental retardation" and their advocacy is encouraging political and social change at national, state, and local levels. Our members demanded that we keep up with times and they voted for this name change." AAIDD members consist of faculty members, researchers, and service professionals working with people with intellectual disabilities in settings such as group homes, institutions, schools, hospitals, private clinics, colleges, and university centers. 

The name of the AAIDD has been an ongoing source of contention in the disability community. While it is widely perceived that mental retardation (MR) is a condition that exists, it was also recognized that the term is prone to abuse, misinterpretation, and has devolved into an insult, especially for people with disabilities and family members. Further, the name AAMR was perceived as not in keeping with the progressive orientation of the information, products, and services offered by the Association.

The applause from the community of people with disability was unanimous once the name change was announced. "In taking 'MR' out of your name, you've set a precedent for it to be taken out of the classrooms, the doctors' offices, personal case records, and eventually out of the vocabulary of people walking down the street," says Amy Walker of Illinois Voices, a group working on behalf of people with intellectual disabilities. 

Hank Bersani, current President of AAIDD explains, "Intellectual disability is a more accurate and modern term, and is also in keeping with terminology in Europe and Canada. We want to move away from any use of the word 'retardation,'  while still allowing educators and other professionals to accurately describe the needs of the people they serve. Further, with the new name, we are reminding our members and the public that our mission has long included people with various developmental disabilities." Most members of AAIDD work closely with people with developmental disabilities since conditions such as autism and Down syndrome often co-exist with an intellectual disability. 

Despite the new name, the core mission of the Association still remains the same-to promote progressive policies, sound research, effective practices, and universal rights for people with intellectual and developmental disabilities. The AAIDD has changed its name four times since its inception is 1876. The Association last changed its name in 1987 to the American Association on Mental Retardation.

Apart from its definition and advocacy work, the AAIDD is well-known for its journals, the American Journal on Mental Retardation and Mental Retardation. In recent times, the Association has received critical acclaim for the Supports Intensity Scale, a planning tool that empowers people with intellectual disabilities to live a desired life by getting services based on individual needs, not deficits. Learn more about AAIDD at www.aamr.org.

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Without Apology

The documentary, Without Apology, about the filmmaker's lifelong relationship with her brother, has just been released on DVD.  As you may recall from previous write-ups about this film, Without Apology deals with the past fifty years in the history of mental retardation from a very personal perspective.  Issues of "blaming the mother" and sibling disaffection--and sibling devotion -- as well as the institutional debacle are all brought home through the story of this all too "typical"  family.

Comments from the professional community have been nothing short of raves. Jan Valle, Professor in the Department of Disability Studies at the City University of New York writes:  "Thank you for bringing Without Apology into my life and into the lives of so many others.  It is a treasure and a magnificent contribution." Karyl Caplan, Executive Director of Rockland Arc: "Without Apology is an important piece -- a story both familiar and surprising.  Susan Hamovitch has created a significant work." Don Meyer, Director, Sibling Support Network:  "...Without Apology creates an invaluable starting point for difficult -- but necessary -- discussions of where we've been, where we are, and where we must go as we care our must vulnerable citizens.  It's a remarkable achievement, a testament to love without apologies..."

The DVD includes extras that will offer new insights into the film and the history of mental retardation.  Among the things you'll find are a film maker interview, excerpts from a keynote speech on sibling issues, a period-costume send-up of the eugenics foundation of institutions, including commentary by Stephen Jay Gould and more...

Chapter breaks have been added for the convenience of organizations and schools that require shorter segments for training and classroom presentations.   And for individuals or groups who may want it, the DVD provides closed-captioning

A free, downloadable study guide will be available shortly on the film's website.  In the meantime, you can learn more about the film, and view clips and photographs:  www.withoutapology.com

To read the article that was published in the June, 2005 issue of Insight, click here:  http://www.thearc.org/insight/2005a/06.pdf

The DVD can be purchased through a link on the website, or by contacting the filmmaker directly at: oneeyedcatprod@aol.com

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PBS documentary explores 200 years of deaf life in America

"Through Deaf Eyes,"  a two-hour PBS documentary exploring nearly 200 years of Deaf life in America, will air early this year. The film was inspired by the exhibition, "History Through Deaf Eyes," curated by Jack R. Gannon of Gallaudet University.

The documentary will air nationally on PBS on Wednesday, March 21 at 9 p.m. ET (check local listings). The film presents the shared experiences of American history - family life, education, work, and community connections - from the perspective of deaf citizens.  Interviews include community leaders, historians, and deaf Americans with diverse views on language use, technology and identity.

Bringing a Deaf cinematic lens to the film are six artistic works by Deaf media artists and filmmakers: Wayne Betts, Renee Visco, Tracey Salaway, Kimby Caplan, Arthur Luhn, and Adrean Mangiardi. 

Poignant, sometimes humorous, these films draw on the media artists' own lives and are woven throughout the documentary.  But the core of the film remains the larger story of Deaf life in America -- a story of conflicts, prejudice and affirmation that reaches the heart of what it means to be human.

Major funding for "Through Deaf Eyes" is provided by the National Endowment for the Humanities, Corporation for Public Broadcasting, PBS, The Annenberg Foundation and the National Endowment for the Arts. Private individuals have also contributed to the funding of this project.  The extensive outreach campaign is funded in part by Sign Language Associates.  Outreach partners are the National Association for the Deaf, Gallaudet University, the National Technical Institute for the Deaf at Rochester Institute of Technology, and California State University-Northridge.  As part of the outreach campaign, numerous local organizations, some in association with their public television stations, will mount events and discussions exploring the issues raised in the film.

 A comprehensive Web site, found at www.pbs.org, accompanies the film. The site includes interviews with the deaf filmmakers whose work is featured in the documentary, while also inviting viewers to submit their own stories, photographs, and films. These will become part of the archival collection of Gallaudet University.  A companion book is being published by Gallaudet University Press.

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Special Education Law and Advocacy Training at Queens College

On Tues, Feb 27, from 8 am-5 pm, The Arc of Mecklenburg County, in partnership with The Council for Children's Rights, will host Wrightslaw,  a one-day special education law and advocacy workshop at Dana Auditorium on the campus of Queens College.  This workshop will be presented by Pete and Pam Wright, national experts on Special Education law. 

Topics covered will include an overview of the Individuals with Disabilities Act, evaluations, tests, and measurements, writing SMART IEPs, advocacy tips, and preparation and strategies for school meetings.  Each participant will receive TWO FREE WRIGHTSLAW BOOKS. 

If you are a parent of a child with a disability or a professional who works with children with disabilities, you cannot miss this exciting opportunity. Call Karen today to reserve your seat at 704-332-4535 ext 16 or email Karen@arcmeck.org.  The fee for parents and guardians is just $10 and the fee for professional is $50.  CEU's and CLE's are available. 

NC Partners in Policymaking Graduate Workshops

For Partners Graduates Only!

For the first time, since NC started its Partners in Policymaking (PiP) Program in 1993, the NC Council on Developmental Disabilities is hosting advanced leadership workshops for Partners in Policymaking graduates.

In the spring and summer of 2007, workshops will be held in Asheville, Winston-Salem, Asheville and Raleigh.  For more information, graduates of the Partners in Policymaking program can visit www.ncpartnersinpolicymaking.com or contact Jill Rushing or Melissa Swartz at 919-420-7901.

We Dream...We Achieve

Mark Your Calendars!

The Association of Self-Advocates of North Carolina presents the 2007 Annual Convention We Dream...We Achieve. The convention will be held March 23 - 25, 2007 at the Embassy Suites, Marriott, Benton Convention Center Winston-Salem, NC

Parent Trainings on Advocacy and Education

The Exceptional Children's Assistance Center has many great trainings coming up. Here are just a few, please visit the ECAC Website for more information and opportunities or you can call them at: 1-800-962-6817

Inclusion- January 30^th  Asheboro, NC   For more information: Vickie Wilson 336-29-9570 or ECAC

Writing Effective IEPs- February 6^th, Smithfield, NC. For more information:  Karen Evans at 919-631-3901 or ECAC

Informed Effective Parents- February 6^th, Thomasville, NC For more information:  Ashley Kreitz:  336-472-7965 or ECAC

Becoming Your Child's Best Advocate- February 15^th, Rocky Mount, NC    For more information:  Meredith Holden at 252-985-4300, ext. 262 or ECAC

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 Until next time............The Arc Works!

Are you a member of The Arc? If not, please consider joining.  Click Here to find a local chapter serving your area. If not, call 1-800-662-8706 and join The Arc of NC.

YOUR membership makes a difference in the lives of North Carolinians with intellectual disabilities.

When you join a local or state chapter of The Arc you also automatically become a member of The Arc of the United States. See all The Arc of the United States has to offer at www.thearc.org

Print The Arc Works!                                                                    September 2006

Welcome to The Arc Works! An electronic publication of The Arc of North Carolina. This publication will bring you up to date news, articles of interest and information about upcoming events. We welcome your suggestions as to how we can improve this newsletter. Send comments to Lguzman@arcnc.org.  Simply scroll down to read the entire newsletter or click on the links below to specific articles that interest you.

          Convention Wrap-Up     2006 Award Winners     Distinguished Affils.

Convention Pics    "Against Special Needs"      OPEN/Net

          Money Follows the Person     NC TASH Conference    Online Resources

North Carolina Convention Wrap-up

 The Arc of North Carolina's Annual Convention was held on September 8 and 9 at the Charlotte Hilton University Place. This year The Arc joined forces with The Arc of South Carolina to put on this event.

There were well over 300 attendees and more than 30 exhibitors. The Arcs of North and South Carolina would like to extend appreciation to the sponsors of the convention which made this event possible.

Platinum Sponsors of The Arcs of North and South Carolina 2006 Annual Convention

The Governor's Advocacy Council for Persons with Disabilities

The Planning Group, Inc

The Arc of North Carolina Board of Directors 

The Arc of South Carolina Board of Directors

Highlights of the convention included Tom Kohler and Susan Earl who told the story of "Waddie Welcome and the Beloved Community." The story told of one man's determination to move out of a nursing home and back to his hometown and of the community members who joined forces and made it possible.

Loretta Claiborne held the audience captive as she told her story of personal determination, courage and triumph. Loretta is internationally known for her athletic achievements and motivational speaking that began through her involvement with Special Olympics.

Breakout sessions were packed full of information that attendees could use. Sessions on community housing options, inclusive education, literacy, health, employment, vocational rehabilitation, early intervention, future planning and advocacy were very well received.

The Arc of North Carolina presented their annual awards during a banquet held on Friday evening. The Arc bestows these awards to recognize extraordinary dedication commitment and excellence in advancing The Arc's philosophy which is that all people have the right and the ability to live in communities of their choosing.

Plans are already underway for The Arc of North Carolina's 2007 Annual Convention.  Back to Top

The 2006 Annual Award Winners

COMMUNICATOR'S AWARD-The Arc of Rowan County

PROFESSIONAL OF THE YEAR-Michael Watson Nominated by The Arc of Moore County

TEACHER OF THE YEAR AWARD-Lynn Wagoner Nominated by The Arc of Greensboro

EMPLOYER OF THE YEAR-Food Lion, LLC Nominated by The Arc of Rowan County

DIRECT SUPPORT PROFESSIONAL-Debbie Holt Nominated by The Arc of Stanly County

VICTOR HALL LEADERSHIP AWARD-Pam Richards Nominated by The Arc of Mecklenburg County

INCLUSIVE COMMUNITY-City of Monroe Parks and Rec Nominated by The Arc of Union County

UNSUNG HERO-Sara Osborne The Arc of Gaston Co.

LEGISLATOR(s) OF THE YEAR-Rep. Jeff Barnhart and  Sen. William R. Purcell

PRESIDENT’S AWARD-Herb Bobbitt

CAREY FENDLEY AWARD-Tonya Fowler Executive Director, The Arc of High Point

MEMBERSHIP AWARD (larger chapter) The Arc of Mecklenburg Co.

MEMBERSHIP AWARD (smaller chapter) The Arc of Gaston Co.

In addition to the annual awards, The Arc of North Carolina also recognized 9 chapters of The Arc as Distinguished Affiliates. This honor recognizes the dedication, commitment and the professionalism of local chapters of The Arc. A chapter that receives the Distinguished Affiliate recognition has met stringent criteria and has provided advocacy, instituted programs, encouraged diversity, participated in, and supported activities that benefit people with developmental disabilities in their communities.

The 2006 Distinguished Affiliates of The Arc of NC

The Arc of Cabarrus County

The Arc of Greensboro   

The Arc of High Point

The Arc of Mecklenburg County

                    The Arc of Moore County                     

The Arc of Rowan County

The Arc of Stanly County

The Arc of Union County

The Arc of Wilson County

Views from Convention 2006

Lauren Mullis, Executive Director, The Arc of Mecklenburg Co., poses with the award for the greatest membership increase for a larger chapter

Teri Smith from Kinston receives The Parent Volunteer of the Year Award from Nancy Ormond, The Arc of NC Board of Directors

Dave Richard and Jean Farmer Butterfield both of The Arc of NC share Advocacy Tips with attendees 

Ice Sculpture!

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The Case Against "Special Needs"   

Revolutionary Common Sense by Kathie Snow

Copyright 2006, Kathie Snow, www.disabilityisnatural.com

Reprinted with permission

Words simultaneously reflect and reinforce our attitudes and perceptions; words shape our world. Many "disability labels" evoke feelings and imagery that perpetuate archaic and negative stereotypical perceptions. In turn, these perceptions create a powerful attitudinal barrier, which is the greatest obstacle to the success and inclusion of individuals who have been labeled.

Using People First Language (PFL) is a step in the right direction. For example, using PFL, we put the person before the disability and use more respectful terminology as in, "He has a cognitive disability," instead of, "He's retarded." (See the People First Language article.) Many of us are consigning stigma-laden personal descriptors to the junk heap, such as  "high/low functioning," "developmental age," "wheelchair bound," and others. But one term--"special needs"--continues to be embraced by many. Because this term is so commonly used, we seldom consider what message it sends or what image it evokes.

"Special needs" is a loaded descriptor that has done nothing to improve perceptions and everything to reinforce negative images. As a parent, I once used this term to describe my son when he was very young. Why not? That's what I heard coming out of the mouths of many  other parents, as well as therapists, educators, and others. But I stopped saying this years ago when I realized it's a descriptor that generates pity. Tell a new acquaintance,  "My child has "special needs," The response is predictable: a sad, "Ohhh..." accompanied by a sympathetic pat on the arm. Worse, some even add, "I'm so sorry..." And this conversation often takes place in front of the child! What must it feel like to be the object of pity, especially when it's generated by the words of your own parent or someone else who professes to care about you?

Adults with developmental disabilities are our greatest teachers. I've never met one who likes "special needs." They vehemently describe disliking the "special" label as children, and they absolutely detest it as adults. When I share this information during presentations, many parents defend their use of the term and add, "But don't all children have special needs?" or “Aren't all children "special"?" I might agree if the term had positive connotations and if we really meant "special." But it doesn't and we don't.

Once we use the "special needs" label, we stop thinking about an individual child and our ingrained assumptions take over. "Oh, yes, we know about those "special needs" kids..." And at that point, we effectively rob a child of opportunities and put limits on her potential.

First, we've stripped her of the opportunity to define herself; what child can defend herself against the words and actions of her parents, teachers, and others? Second, we continue our robber baron ways by stealing opportunities for the child to lead a typical life. When applied to children and adults with disabilities, the "special" descriptor frequently—and almost automatically—leads to segregation! If we say a child has "special needs," then by extension, she must need "special (segregated) ed," "special" activities, and "special" environments. If she has "special needs" then she must not be "regular," and is therefore not entitled to participate in "regular" (typical) activities or live a Real Life. Too often, "special" has become a metaphor for "segregated."

A parent may believe that her child can and should be included in school and the community. But if she uses "special needs" when describing her child to others, they may believe that inclusion isn't an option—only a "special" environment will do. Labeling a child with the "special needs" descriptor puts her in a box ---a box of our making, a box she never asked to be put into, and a box that limits hopes, dreams, high expectations, opportunities, and more. Many educators admit that they routinely have low expectations for children who are labeled with "special needs."

If our society believed children with "special needs" were really special, wouldn't every parent dream of having a "child with special needs?" But the opposite is true: our society so devalues children with disabilities that identifying and aborting them before they're even born is recommended by many health care professionals, and practiced by many parents. And within the adoption world, "special needs children" are often at the bottom of the list of "desirable children." So, again, just how special are children with "special needs?" Isn't the term actually a harmful euphemism which means just the opposite?

What do we really mean by "special needs" anyway? Like other disability descriptors, it may initially apply to one aspect of a person's life (a medical condition), but it quickly defines every aspect of a person like a terrible, dark shroud. Some people use the longer descriptor: "children with special health care needs." What makes one type of health care needs different or more "special" from another? Where, exactly, is the dividing line between "regular" health care needs and "special"  health care needs? Who made this rule? Is this written somewhere? Do children with disabilities go to "special needs doctors" or "special needs hospitals?" I don’t think so! During visits to my son's pediatric orthopedic physician, we saw children who had permanent physical disabilities and others with broken legs or arms. Does the child with a developmental disability have "special needs," but the child with a broken leg has "regular needs?"

If we use the "special health care needs" descriptor with legislators or policymakers, don't we need to explain what we really mean, or is the "special needs" imagery ("those poor, pitiful children") so deeply implanted in people's minds that it's assumed we know who and what we're talking about? A child might need a specific type of health care services, a wheelchair, or other types of support, accommodations, or assistive technology. And these may be different from the needs of a majority of children. But what makes these needs "special?" They’re not "special" to the child. They are, in fact, perfectly ordinary needs for him. Calling my son's needs "special" because he needs a power wheelchair for effective mobility and I don't (at the present time) is an arrogant judgment call on my part.

What about the "special ed students" descriptor? In one school district's report on its "inclusive practices," the terms "special education students" or "special needs students" littered every page. The very use of these terms contradicted the thesis of the report: that students with disabilities were "included." Exclusion and marginalization always begin with the language we use and the mental images evoked by our words. In schools that are truly inclusive, students who receive special education services are "students," first.

Who really benefits from the "special needs" label? Certainly not the children or adults who have been labeled! They've been set apart and, thus, marginalized. Supporters of this descriptor can argue that saying "children with special needs" was necessary when advocating for certain laws, programs, or services. However, the same outcomes could have been achieved without the use of this pejorative term. In too many instances, we have chosen to use "special needs" in order to gain our objectives (because it evokes powerful emotions), but at what price to those who have been labeled?

"Special needs" is everywhere! The term is used by many organizations, it's on hundreds of websites, and it's one of the best terms for pulling at heartstrings! Want to raise money for your organization? Promote it as a fundraiser for "special needs kids," consider the imagery ("those poor, pitiful children"), and watch the dollars roll in. But again, at what price to the children who have been saddled with this sympathy-laden term?

Have we ever wondered how this descriptor might impact other children in the family? A brother might think, "If Mom says Katie is "special," what does that make me? Does Mom love her more?" The label can breed resentment and anger. But as the brother grows, he'll probably realize he doesn’t want to be "special," especially if his "special" sister is marginalized, excluded, and pitied.

Far from being a compliment or an accurate term, "special needs" is a pejorative descriptor that creates a powerful attitudinal barrier to the inclusion of people who have been labeled. When using People First Language, we put the person first and also replace antiquated descriptors with words that are more respectful and accurate. But there is no singular replacement term for "special needs."

We can, however, use a variety of different descriptors, depending on the situation. In schools---and when it’s appropriate---we can say "students who receive special ed services" (that’s what it’s supposed to be: services brought to the student, instead of making the student go to where the services are located). And we can use the generic, "children with disabilities" or the specific, "A child with (the name of the medical diagnosis)," when appropriate. But the use of any label should be restricted to specific times and places (at an IEP meeting, the doctor's office, etc.). Labels are, after all, simply medical diagnoses, and just as most of us don't share personal information such as medical diagnoses with every Tom, Dick, and Harry, we shouldn't be sharing the personal information of children and adults who have been labeled unless it's absolutely necessary, under certain circumstances, and with the permission of the person!

If we're serious about exploding disability myths and creating an inclusive society, do we dare set one group apart with the "special" descriptor? Shall we continue to perpetuate pity and marginalize people by using this label? Isn't it time to stop calling people names which they never chose to use about themselves? When we change our language, we change perceptions and attitudes. And when the Great Wall of attitudinal barriers falls, other barriers will also come tumbling down. Are the words you're using promoting a positive or negative image? Are they propping up the Great Wall of harmful perceptions or helping to tear it down?

Reprinted with permission.  Disability is Natural BraveHeart Press Toll-free: 1-866-948-2222 1-719-687-0735 Fax: 1-719-687-8114

P. O. Box 7245 Woodland Park, CO 80863 www.disabilityisnatural.com

"Hot Topics in Special Education"

On September 26, from 8– 9:00 p.m., the Governor's Advocacy Council for Persons with Disabilities (GACPD) will present "Hot Topics in Special Education" on OPEN/Net, the statewide cable television call-in program produced by the Agency for Public Telecommunications (APT). "For parents of a child with a disability, there are many challenges in securing the services and education to which their child is entitled. Negotiating the maze of laws and regulations can make a parent feel overwhelmed and alone," said Mark Urban, Chair of GACPD. Viewers can find their local channel on APT's web site: www.ncapt.tv/local.htm

During the September 26 program, parents can learn about some of the important laws concerning special education and can discuss other education concerns. Two staff attorneys and a child psychologist will be available to respond to questions and comments live on the air.

The Governor's Advocacy Council for Persons with Disabilities is part of a national network of protection and advocacy agencies and can help parents with issues concerning their child. GACPD and APT are in the NC Dept. of Administration.

During the program, viewers can call in toll free to 1-888-228-6736. Callers will be put through to talk with the panel live on the air. Operators can take questions off the air as well, People can also send in questions and comments by email to open@ncmail.net

OPEN/net is now also available on the internet. Download live streaming video from APT's web site (www.ncapt.tv) on September 26 from 8-9:00 p.m.  Back to Top

NC Medicaid Agency to Apply for Money Follows the Person Grant

The NC Department of Health and Human Services (DHHS) - Division of Medical Assistance (DMA) recently announced their plans to apply for a federal grant aptly named "Money Follows the Person" (MFP). Through the MFP initiative, the Center for Medicare & Medicaid Services (CMS) will provide a total of $1.75 billion over the next five years to states to help shift Medicaid from the historical emphasis on institutional long-term care services to a home and community based service system, offering more choices for seniors and people with disabilities across all age groups. The deadline for the first year's application is November 1, 2006. The comprehensive MFP program announcement and additional information are available on the CMS website at: http://www.cms.hhs.gov/NewFreedomInitiative/downloads/MFP_2007_Announcement.pdf

Highlights of the grant announcement are available on the next page.

DMA has a very short time period to prepare the grant application (the state Medicaid agency is required to submit the application) and is seeking input from all people who are interested. In addition, a Stakeholder Workgroup has been appointed by the Secretary of DHHS, Carmen Hooker Odom.

DMA has asked the NC Disability Action Network (NC DAN) to partner with them to distribute information about the MFP grant as well as serve as a "clearinghouse" for questions and input. You can send your questions and input in through this site to NCMFP@NCDAN.com. Questions will be compiled, forwarded to DMA, and responses posted on this site twice a week while the application is being prepared. Input will be forwarded to the Stakeholder Workgroup. Workgroup meeting announcements will be posted on this site, as well as notes/minutes from the meetings. Other announcements on the progress of the application will be posted as well.

This partnership between NC DAN and DMA should serve to benefit both groups. DMA leaders have committed to work with individuals directly connected with long-term care institutional services and those interested in the transition to home and community based services.

Information at www.ncdan.com

Highlights of: "Money Follows the Person" Demonstration Grants and Considerations for North Carolina

 $1.75 billion over five years is available to states under this demonstration grant opportunity.

The purpose of the grant is to help shift Medicaid from its historical emphasis on institutional long-term care services to a system that offers more choices for seniors and persons with disabilities from all age groups.

Applications must come from the State Medicaid Agency.

Stakeholders must be involved in the design and decision making process for the grant.

Demonstration grant funds will provide enhanced federal financial participation rates (FFP) for Medicaid services provided to individual Medicaid recipients who are transitioned from an institution to the community as part of this grant. The enhanced rates can be applied to the individual's services up to 12 months following transition to the community setting.

An institution is defined as an inpatient facility (this would not include adult care homes).

To get the enhanced FFP for the Medicaid services, individuals must transition to a qualified residence: 1) a home owned or leased by the individual or the individual’s family member; 2) an apartment with an individual lease, lockable access and egress, includes separate living, sleeping, bathing and cooking areas over which the individual or individual's family has domain and control; or 3) a residence, in a community-based residential setting, in which no more than 4 unrelated individuals reside.

Grant funds can be used not only for alternatives to institutional care services, such as home health care; they can also be used for home modification costs, respite services to augment informal or unpaid caregivers, personal care and assistive devices.

States are encouraged to coordinate with local and state housing authorities to provide coordinated assistance for community-based housing needs.

Each state awarded a grant must continue to provide community services after the year of enhanced match as long as the person needs community services and is Medicaid eligible. Services may be provided through the community waiver programs or through regular Medicaid state plan services.

States that receive the grant funds may take up to 12 months of pre-implementation to engage in formal planning and to work out the design details prior to actual implementation of the transitions process.

The deadline for the application is Nov. 1, 2006. Demonstration grants will be competitively awarded to states from Jan. 1, 2007 through Sept. 30, 2011. Funds will be available for a five-year period.  Back to Top

NC TASH presents its 2006 Convention "TRANSFORMING PRACTICE, RESTORING LIVES"

November 29-December 1 Marriott Hotel 460 North Cherry Street Winston Salem, North Carolina (336) 725-3500

The conference will be facilitated by: Tom Nerney, principal architect of the self-determination movement Pat Carver, national trainer in self-determination and community development Statewide Mayor's/Advocacy Awards luncheon on Nov. 29th Visit www.nctash.com for details.  Back to Top

NATIONAL AND STATE ONLINE RESOURCES

www.autism-society.org- The mission of the Autism Society of America is to promote lifelong access and opportunities for persons within the autism spectrum and their families, to be fully included, participating members of their communities through advocacy, public awareness, education, and research related to autism. Link to the Autism Society of NC

www.ldanatl.org-The Learning Disabilities Association has information geared to people with learning disabilities. There is a link to the LDA of NC.

www.tash.org- TASH supports the inclusion and full participation of children and adults with disabilities in all aspects of their communities as determined by personalized visions of quality of life. This site has numerous resources and links about inclusion for people with significant disabilities including a link to TASH in NC.

www.nami.org- The National Alliance for the Mentally Ill (NAMI) is a nonprofit, grassroots, self-help, support and advocacy organization of consumers, families, and friends of people with severe mental illnesses, such as schizophrenia, major depression, bipolar disorder, obsessive-compulsive disorder, and anxiety disorders.

www.nc-ddc.org- The NC Council on Developmental Disabilities is part of a national network of organizations that assist people with developmental disabilities that work to promote the "independence, productivity, integration and inclusion into the community" of people with developmental disabilities and their families. The website has publications to download as well as information and resources.

www.ncatp.org- The North Carolina Assistive Technology Program is a state and federally funded program that provides statewide assistive technology services to people of all ages and abilities. On this site is also a classified ad section where people sell used equipment: accessible vans, wheelchairs, scooters and much more.

 Until next time............The Arc Works!

Are you a member of The Arc? If not, please consider joining.  Click Here to find a local chapter serving your area. If not, call 1-800-662-8706 and join The Arc of NC.

YOUR membership makes a difference in the lives of North Carolinians with intellectual disabilities.

When you join a local or state chapter of The Arc you also automatically become a member of The Arc of the United States. See all The Arc of the United States has to offer at www.thearc.org

The Arc Works! is a publication of The Arc of North Carolina. The Arc Works! offers readers information about products, services and/or agencies that may be of interest to readers, however The Arc of NC does not endorse specific products, services and/or agencies.

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