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Fall 2013 - Volume LII, No. 4 Quarterly Publication

Pennsylvania Message U.S. SUPREME COURT TO CONSIDER DEATH PENALTY CASE INVOLVING INTELLECTUAL DISABILITY On October 21, the United States Supreme Court agreed to hear the case Hall v. Florida to determine whether the Florida Supreme Court correctly upheld the death sentence of Freddie Lee Hall, whose IQ is just above the state’s standard for “mental retardation,” the term still used by many courts for people with intellectual disability. Hall, 68, was sentenced to death in 1978 for the murder of a young woman from Leesburg, Florida. Hall’s co-defendant, who ultimately received a life sentence, was the actual shooter. Hall has testified that he did not intend the victim’s death, and that he also tried to dissuade his co-defendant from beating and killing the victim. Once caught, he was cooperative, taking the police to the body and voluntarily admitting his involvement. In 2002, the U.S. Supreme Court in Atkins v. Virginia ruled that the execution of individuals with “mental retardation” is unconstitutional. Controversy persists, however, because the Court’s ruling in Atkins did not provide a definition of intellectual disability, allowing each state to set its own standards in determining intellectual disability. In Pennsylvania, for example, it is up to jurors to decide whether a defendant has an intellectual disability and is thus ineligible for execution. A wealth of evidence indicates that Hall has an intellectual disability. Court documents show that Hall’s grade school teachers from an early age described him as a student with intellectual disability. Continued on page 10. (For more on Intellectual Disability and the Death Penalty, please see the Executive Director’s Message, p. 3)

President’s Message - Jeanne Downey New Year’s Resolutions for Advocates It’s that time of year again when we all start brainstorming what New Year’s resolutions we will make for 2014. In addition to eating healthier, exercising more, and kicking those old habits, how about resolving to be a better advocate for people with intellectual and developmental disabilities? Whether you are a self-advocate, a family member, a friend, a coworker, a staff members or a volunteer, I challenge you to make these resolutions. LEARN: We need to learn more about how we can effect policy change. Aspects surrounding policies, systems, and legislation are constantly changing and we need to keep current on the details. We can use a variety of resources to gain more information about the topics, such as PIE (Policy Information Exchange), Acton Alerts, The Arc of PA website, and Executive Director Updates. The staff at The Arc of PA is also available to provide you with key information. And knowledge is power for advocates! NETWORK: The Arc of PA has 34 chapters in 57 counties across PA, with 8,000 members. That is a lot of potential contacts for us all! Local chapters offer a variety of events, services, fundraising activities, communication tools, etc. We can get a lot of ideas for our own chapter by contacting other local chapters. And chapters should share their news, newsletters, Facebook pages, etc., with other local chapters to stay connected. Sharing experience is a big part of how our community learns from each other. As advocates, we have the same purpose and with such a large network, we can accomplish anything! TALK: A key rule for advocates is “tell your story”. We tend to think of talking to our legislators and elected officials and telling them about how issues and systems affect the lives of individuals with intellectual and developmental disabilities. And we need to continue to do this. But we need to think about telling our stories to our families, friends, neighbors, fellow worshipers, coworkers, etc. Just because we are close to these people, doesn’t mean they understand the issues. Take the opportunity this year to volunteer to speak at local schools, colleges, community centers and places of worship. All of this talk can greatly expand our advocacy efforts. LISTEN: Listen to the “other side” of issues to find common ground or to clarify the disagreement. See the task of advocacy as a way of solving a problem, not a battle of wills. We can often improve relationships though effective communication, involving listening and speaking. We can earn the respect of others by listening to their ideas and in return, they hopefully will listen more attentively to us. CELEBRATE: We often spend so much time and energy confronting the issues that we forget to celebrate our accomplishments. We need to continually talk about the history of The Arc movement and ALL that has been accomplished over the years. Many chapters celebrate their advocates and staff with award ceremonies and special recognitions. Every positive impact on the lives of people with intellectual and developmental disabilities needs to be celebrated. It is in celebrating that we can reenergize our passion! Jeanne Downey is from Erie County, Pennsylvania. She began her second 2-year term as President of The Arc of Pennsylvania in June 2013.

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Pennsylvania Message

Executive Director’s Message - Maureen Cronin A Deeper Look at Intellectual Disability and the Death Penalty In the coming months, the U.S. Supreme Court, in Hall v. Florida, will once again take up the issue of intellectual disability in cases where the defendant is facing execution. Although the court ruled in Atkins v. Virginia (2002) that it is unconstitutional to executive someone who has an intellectual disability, defendants with intellectual disabilities are still in danger of being put to death because the 2002 ruling left it up to the states to determine what constitute as an intellectual disability. Standards for determining whether a defendant has an intellectual disability, and is therefore precluded from receiving a death sentence, vary from state to state. Florida has a strict standard, saying that anyone with an IQ above 70 cannot be considered as a defendant with an intellectual disability. In Georgia, defendants are required to prove “beyond a reasonable doubt” that they have an intellectual disability. In addition to how intellectual disability is determined, states also vary in who can determine whether a defendant has an intellectual disability. Some states make their determination during pre-trial procedures, while other states wait until the sentencing phase to consider evidence related to the mental health of the defendant. In some states, the judge decides whether the defendant has an intellectual disability based on evidence presented by mental health experts and other professionals. In our own state of Pennsylvania, it is up to members of the jury to decide. Whether it’s the judge or members of the jury, it should be cause for concern that very significant decisions about people who may or may not have intellectual disabilities are often made by people who have no expertise on developmental and intellectual disabilities. Furthermore, we should find it extremely alarming that the standards for making these life-and-death decisions are unreliable and arbitrary. When someone’s life is on the line, we need processes and standards that account for the all the complexities and nuances that are involved in determining intellectual and developmental disabilities. Some mental health and legal experts believe that people with intellectual disabilities have been executed even after the Atkins ruling because of intellectual disability determination issues that persist in the states. As long as we have the death penalty in Pennsylvania, we are risking the execution of someone who has an intellectual disability, an act that has already been banned and deemed unconstitutional. Send Maureen your comments at mcronin@thearcpa.org.

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Systems Advocacy & Government Affairs … In Brief The Arc of Pennsylvania has been invited to be a guest at meetings of the House Intellectual Disabilities Caucus by Representative Murt (R-Montgomery), who chairs the caucus. During ID Caucus meetings, Representatives meet to discuss policy and legislation related to people with intellectual and developmental disabilities in Pennsylvania. We will be updating you with information from these meetings in coming publications. Intellectual Disabilities Waiting List Hearing The House Human Services Committee held a hearing on November 18th to hear testimony on the current ID Waiting List, Adult Protective Services, and The ODP Futures Plan. Advocates from the disability community shared testimony about the difficulty in obtaining waiver services, Pennsylvania’s continued lack of an Olmstead plan, and the need for full implementation of Adult Protective Services. Ashlinn Masland-Sarani, Pam Klipa, and Matt Stinner represented The Arc of Pennsylvania at the hearing. DPW Name Change Event The Campaign For What Works, a coalition of over 40 non-profits including The Arc of Pennsylvania, organized an advocacy day at the Capitol to support changing the name of the Department of Public Welfare to the Department of Human Services. Arc of PA Board member Joshua Stranix spoke at a press conference and directly to legislators about the supports that give him access to work. Matt Stinner, Maureen Cronin, and Ashlinn Masland-Sarani also participated in legislative visits to support the name change.

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Advocacy for the name change centers around a push for the passage of HB 993, sponsored by Representative Thomas Murt (R-Montgomery). The bill changes the name of DPW to the Department of Human Services, and people with disabilities as well as their families and advocates have pointed to the degrading connotation of the word “welfare” in association with the supports they receive. Special Education Funding Commission The Special Education Funding Commission, established by Act 3 of 2013, held hearings across Pennsylvania about the impact of special education on families. Pam Klipa organized parents who are members of The Arc to offer testimony at several of these hearings. The commission has wrapped up their hearings and will release its recommendations for a new, weighted special education funding formula on December 11th in Harrisburg. Bullying and Disability Harassment The Early Childhood/Education Sub Committee has distributed a packet that includes The Arc of PA Position paper on Bullying and Disability Harassment and related materials on Positive Behavior Supports to a wide network across Pennsylvania. The documents are posted on The Arc of PA website. Please distribute and post on websites of advocacy and support groups. Burden of Proof Legislation Senator Browne (Lehigh/Northampton) has agreed to sponsor this legislation for parents and families, through the encouragement of The Arc of PA. This legislation is aimed, through legislation, to place the burden of proof in due process on school districts, regardless of who initiates the action. Coming soon will be a co-sponsor memo, intended to get as many co-sponsors to the bill as possible.

Pennsylvania Message

WHEELS OF FRIENDSHIP ART SERVES AS BEAUTIFUL REMINDER OF THE IMPORTANCE OF INCLUSION Last September, The Arc of PA/Include Me sponsored a Wheels of Friendship event at Riverside West Elementary School in Lackawanna County in northeastern PA. Wheels of Friendship is a program, facilitated by Mikayla’s Voice, where children paint not with brushes, but with the wheels of a wheelchair and the paws and tail of a service dog. Sixty students from Riverside West Elementary School created a piece of art with their friend Helen, who uses a wheelchair. For the first time in the Wheels of Friendship program, the child in the wheelchair was able to self propel her own chair allowing her to apply the paint to the canvas after selecting different friends to add the paint to her wheels. Every kindergarten student also added a handprint and “paper doll,” which signified their individuality. Bethlehem Area Vocational Technical School (BAVTS) students then stretched the finished canvas onto a frame they built from reclaimed wood from Hurricane Sandy. BAVTS students also built an easel to allow the painting to be temporarily displayed for two schoolwide “Our Friend Mikayla” assemblies and at an upcoming presentation to the School Board. The artwork was unveiled at the Riverside West Elementary School on November 26 with students from BAVTS in attendance. Rita Cheskiewicz, Program Director of Include Me, who was on hand at the unveiling, reflected on the impact of programs like Wheels of Friendship on celebrating the inclusion of students of all abilities. Cheskiewicz said, “There were so many messages about inclusion [at the assembly], from the Continued on page 9

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Are You Ready? Emergency Preparedness, Assistive Technology and Persons with Functional and Access Needs. By Jamie Arasz Prioli, RESNA ATP

September was National Preparedness Month and we want you to be prepared! Pennsylvania is no stranger to natural disasters such as flooding, fire, hurricane and tornado. People with disabilities, and especially people who use assistive technology, have unique needs when it comes to developing an emergency plan. Consider the following key points: • Plan for the possible need to evacuate your home, school or workplace. Perform a personal assessment of the assistive technology (AT) you use. Identify what kind of resources you use on a daily basis and what you might do if those resources are limited or not available. What do you need to maintain your health, safety and independence? In addition, make sure you have what you need to stay where you are or “shelter in place”. • Develop a list of AT used in your daily life. Do you use AT: To assist you with mobility? To help with your personal care? To help you during meal time? For communication? For transfers? For transportation? For reading or listening? • Learn how to send personal updates via text and internet from your mobile phone to your contacts and social channels in case voice communications are not available. • Sign up for emergency emails and text messages from your local government alert system to get important information on your cell phone, in case you are deaf, hard of hearing, or not able access emergency notifications when they occur. • Plan to make it on your own, at least for a period of three days. Compile a list of the AT critical to support your physical well-being and ability to communicate during an emergency. Have an appropriate back-up power supply and know how long the power supply lasts. • Build an emergency “go kit” with your needs in mind. Your go kit should include items such as a battery or solar powered radio, flashlight, water and non-perishable food, power chargers for AT, copies of health insurance and identification cards, small denominations of cash, a list of emergency contacts and AT vendor information, AT serial numbers, and list of allergies to any drug or food. • Think about how you might go about obtaining a short-term (or long-term) replacement for your AT, if needed. Contact Pennsylvania’s Initiative on Assistive Technology (PIAT) at 1-800-204-7428 (voice), 1-866-268-0579 (TTY), or atinfo@temple.edu to find out about obtaining AT.

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Pennsylvania Message

It’s important to plan, gather, ask, inform, store, list, and prepare! For more information on emergency preparedness for individuals who use assistive technology and who have functional needs, contact PIAT at 1-800-204-7428 (voice) 1-866-268-0579 (TTY) or atinfo@temple.edu. You can also visit the following resources on the web: • Institute on Disabilities at Temple University: http://disabilities.temple.edu/programs/eprep/ • Reused and Exchanged Equipment Partnership (REEP): http://disabilities.temple.edu/programs/ assistive/reep • Pennsylvania Emergency Management Agency: www.readypa.org • Disability Preparedness Resource Guide: www.disabilitypreparedness.gov • Federal Emergency Management Agency: www.fema.gov • Inclusive Preparedness Center: www.inclusivepreparedness.org • American Red Cross: www.redcross.org • Pass It On Center: www.passitoncenter.org RESOURCES FOR ASSISTIVE TECHNOLOGY PA Assistive Technology Foundation—1-888-744-1938 (voice) or 877-693-7271 (TTY) or 484-674-0510 (fax) or email patf@patf.us Website: www.patf.us PA Initiative on Assistive Technology—1-800-204-7428 (voice) or 866-268-0579 (TTY) or email ATinfo@temple.edu PA Telecommunication Device Distribution Program 1-800-204-7428 or email TDDP@temple.edu http://disabilities.temple.edu/programs/assistive/piat

Do You Have Questions? Ask the Self Advocates “Ask the Self Advocates” is a new way for people to get their questions answered. If you or a family member has a question for our self advocates, whether it is about institutions, waiver dollars, the purpose or history of The Arc , or anything else, please let us know. The Arc of Pennsylvania is blessed to work with numerous talented self advocates from across the state, and they want to help other people with disabilities. Bill Krebs has agreed to lead the “Ask the Self Advocates” group, which will discuss the questions and prepare a response. Your questions and their answers will be included in future issues of the PA Message. Send your questions to: Amy Houser Suite 403 — Pennsylvania Place 301 Chestnut Street Harrisburg, PA 17101 ahouser@thearcpa.org Pennsylvania Message

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(left to right) Dr. Barbara Minzenberg, Deputy Secretary of the PA Department of Public Welfare and head of the Office of Child Development and Early Learning, is being congratulated by Tanya Regli, executive director of The Arc of Philadelphia, and MJ Bartlemay, past president of The Arc of PA, at the Education Law Center dinner recently which honored Minzenberg. Morris Dees, founder and CEO of the Southern Poverty Law Center, was the keynote speaker. Photo by Bonnie Squires.

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kindergarten students to one of the students from [BAVTS] who shared with the assembly that he has autism and what it is like to have autism.� The Wheels of Friendship event was made possible by a grant from the Harry and Jeanette Weinberg Foundation. The Harry and Jeanette Weinberg Foundation is one of the largest private foundations in the United States. The Foundation’s sole purpose is to assist low-income and vulnerable individuals and families through nonprofit grants to direct-service providers and programs. For more information visit http://hjweinbergfoundation.org/. The painting will be on permanent display at the door where all students exit to go to recess, and will serve as a beautiful reminder that it is always possible to find a way to include everyone.

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One psychologist’s examination found organic brain dysfunction and severe cognitive impairment. Another psychiatrist found that Hall is chronically psychotic, brain damaged, and has severe learning disabilities which are compounded by his use of drugs and alcohol, and has a distinct speech impediment. Although mental health professionals use a number of different factors to determine whether a person has an intellectual disability, Florida’s law dictates that defendants with an IQ above 70 cannot be considered as a person with intellectual disability. Despite other evidence showing that Hall has an intellectual disability, he is still facing execution because his scores on three IQ tests ranged from 71 to 80. Hall v. Florida will be argued later in the Supreme Court’s term.

The Arc of Pennsylvania Welcomes New Communications and Public Relations Consultant Last November, Elaine de Leon joined The Arc of PA as its new Communications and Public Relations Consultant. Elaine serves as the new editor of the PA Message, and works with the Arc of PA staff on various communications needs of the organization. Elaine has worked with non-profit organizations on a variety of public policy issues, including the death penalty, reproductive rights, human rights, and global poverty. She has also conducted media trainings and various workshops in public opinion research, message development, and online communications strategy. In her leisure time, she enjoys cheering for the Washington Nationals, cooking, reading, and ballroom dancing.

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LEARN MORE/ DO MORE Stay Informed with PIE Email us at pie@thearcpa.org to receive electronic alerts and the quarterly newsletter from the Policy Information Exchange (PIE), which The Arc of Pennsylvania manages for the PA Developmental Disabilities Council. PIE covers public policy issues for Pennsylvanians with disabilities, their families, and advocates.

The Arc of PA Board of Directors Jeanne Downey – Erie President Ken Oakes – Philadelphia 1st Vice President William Burke – Lackawanna 2nd Vice President Jean Searle – Philadelphia Secretary Michael Marsh – Montgomery Treasurer Paul Conway – Montgomery Past President Christy Lewis - Washington PCE Representative Frank Bartoli - Delaware At Large Jessica Capitani - Dauphin At Large Cynthia Dias - Greene At Large Wayne Freet – Adams At Large Karen Grady – Lehigh At Large Sarah Holland – Lancaster At Large Kurt Kondrich – Allegheny At Large Cecilia Lee - Montgomery At Large Nancy Murray – Allegheny At Large Philip Rosenbauer - Butler At Large Joshua Stranix – Schuylkill At Large Sara Wolff – Lackawanna At Large M.J. Bartelmay – Mercer Ex-Officio The Arc of U.S. Board Gary Horner – Allegheny Ex-Officio The Arc of U.S. Board


Email Edition of the PA Message In order for us to reduce printing costs - and for you to receive your news more quickly - we need your email address. The Pennsylvania Message is now available via email. Everyone who provides us an email address will receive an electronic edition. Please send your full name, local chapter, and email address to: elaine@elainedeleon.com

Pennsylvania Message

Executive Director Maureen Cronin Government Relations Director Pam Klipa Director, Include Me From the Start Rita Cheskiewicz Policy & Development Director Ashlinn Masland-Sarani Operations Director Gwen Adams Administrative Support Amy Houser Financial Support Sara Hughes Self Advocacy Engagement Consultant Matthew Stinner Communications and Public Relations Consultant Elaine de Leon Suite 403 — Pennsylvania Place 301 Chestnut Street Harrisburg, PA 17101 717-234-2621 www.thearcpa.org Page 11

Non-Profit Org. US POSTAGE PAID Harrisburg, PA Permit No. 649

The Arc of Pennsylvania 301 Chestnut Street Suite 403 Harrisburg, PA 17101

The Pennsylvania Message is published by The Arc of Pennsylvania. The Arc of Pennsylvania is affiliated with The Arc of the U.S. & 34 local chapters covering 51 counties in PA.

The Arc of PA is thankful for the continued generous support of The Knights of Columbus! Here is our lovely Board President Jeanne accepting a check from John Fitzpatrick, PA State Treasurer for The Knights of Columbus at our September board meeting.

Profile for The Arc of Pennsylvania

Arc newsletter fall 2013  

Arc newsletter fall 2013  

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