Fall 2012 - Volume LI, No. 4 Quarterly Publication
Pennsylvania Message It’s Time to VOTE! 2012 Election Day is Tuesday, November 6. Pennsylvanians will vote for President and U.S. Senator, and well as for other state and local officials.
• Register to vote by October 9 • Be sure you have a Valid Photo ID • Learn About the Issues and Candidates
At www.Votespa.com you can confirm if you • Vote on November 6 or someone you are supporting is registered to vote and if your or their picture ID match If you have trouble obtaining a Voter ID or voting, please the name that is registered to vote. The call The Arc of PA at 717-234-2621 deadline to register to vote is 30 days prior or email mcronin@thearcpa.org. to the election. If you are not currently registered, your registration form must be submitted or postmarked on or before October 9, 2012. For the first time, registered PA voters are required to present a valid Photo ID in order to cast a ballot. The state Supreme Court reviewed challenges to the Voter ID law and has ordered Commonwealth Court Judge Robin Simpson to determine by October 2 whether photo IDs will be readily available for this November’s election. If the judge finds the state is unable to ensure the new ID is readily available, he may order the law suspended until after this year’s election. If the law remains in effect for the November election, acceptable forms of ID are: *Photo IDs issued by the U.S. Federal Government or the Commonwealth of Pennsylvania *Pennsylvania driver’s license or non-driver’s license photo ID (IDs are valid for voting purposes 12 months past expiration date) *Valid U.S. passport *U.S. Military ID (active duty and retired military) - Military or veteran’s ID must designate an expiration date or designate that the expiration date is indefinite. Military dependents’ ID must contain an expiration date. *Employee photo ID issued by Federal, PA county or municipal government VOTING, continued Page 5
President’s Message - Jeanne Downey So don’t you sit upon the shoreline And say you’re satisfied Choose to chance the rapids And dare to dance that tide … As we enter into the Fall of 2012, I hope you all feel re-energized after a whirlwind of advocacy activity these past several months. The Arc chapters, members, families, and individuals have definitely made their voices heard around the State and we have created change. We have influenced the mindset of so many people whose decisions directly affect the lives of those with intellectual and developmental disabilities. Elected officials and other system representatives now understand how critical it is to include us as they move forward in policy making and in budget decisions. Recently, the Secretary and Deputy Secretary of the Department of Public Welfare met directly with families and individuals to hear their stories first hand. And those officials drove to different parts of the state for those meetings; not the other way around. At the September 7-8th meeting, we began drafting our Strategic Plan, which will guide our efforts for the next several years. Members of the Board of Directors, local chapter executive directors, local chapter Board Presidents, and staff of The Arc of PA participated in this thought provoking, creative, and entertaining process. It was an amazing opportunity for the group to get to know each other better and to focus our attention on what we believe the future of The Arc to be. We need to be bold and clear about our direction as an organization so that we can continue to effect change and improve the lives of individuals with intellectual and developmental disabilities. We certainly have accomplished a lot over these past several years and we should be VERY proud of all that we have done! But we can’t stop here. There is so much more to do in the coming months: the Fiscal Year 2013-14 State Budget is already being prepped, school districts are looking at ways to economize, health care reform continues to expand, and affordable housing and job creation in Pennsylvania are key initiatives. We all need to insist that individuals with intellectual and developmental disabilities and their families are included in the discussions and the decisions on these matters! We must take chances and we need to be daring in our efforts! It isn’t very easy and it isn’t always popular, but as advocates, we need to keep pushing and never be satisfied until all individuals are living their lives in the way that they choose. So don’t you sit upon the shoreline And say you’re satisfied Choose to chance the rapids And dare to dance that tide … — The River by Garth Brooks Jeanne Downey is from Erie County, Pennsylvania. She began her 2-year term as President of The Arc of Pennsylvania in June 2011.
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Pennsylvania Message
Executive Director’s Message - Maureen Cronin Voting Rights for Everyone It is 2012, and while we have made great strides in helping people with disabilities exercise their right to vote, there is so much more to do. I am disappointed that policymakers and elections officials continue to throw roadblocks in the way of people with disabilities, but The Arc will continue to work to ensure that every eligible person in PA can vote. When voter ID became law in PA and the subsequent legal challenges and state Supreme Court decision, the media and opponents broadly described the law as disenfranchising students, people in poverty and senior citizens. Setting aside the political question of whether requiring picture ID is right or wrong, I am struck that persons with disabilities are rarely discussed as a group possibly affected by the law. Is it because the public believes persons with disabilities have great access to public transportation and can easily get to PennDOT centers to pick up the alternative ID? Are persons with intellectual disabilities seen as having a right to vote? Are people unaware of how challenging it is for persons with disabilities to learn how to access accommodations? My friend Jan went a few years ago to vote with her sister. Her sister identified herself as the person coming to assist Jan in voting. The Judge of Elections (lead poll worker at a polling center), with clipboard in hand and in front of everyone waiting, asked Jan to identify her disability. Clearly, the Judge of Elections had made judgments about Jan’s ability to understand who she was voting for. Jan was very confused as no one had ever asked her to identify her disability. Ironically, Jan was a very active member of her community and personally knew many of the local candidates on the ballot. Jan and her sister left embarrassed and humiliated. Jan’s sister wrote to the State’s Judge of Elections to alert them that training was clearly needed for local poll workers. So now we face new voter ID requirements, in addition to the other obstacles. The PA Department of State created a website (www.VotesPa.com) to assist voters. It is actually a very good website, but not if you are a person with disabilities. If you click on “citizen with a disability” you see this message: “In some cases, a polling place may not be easily accessible for those with disabilities. You can contact your local County Board of Elections to make sure ahead of time. Keep in mind that even if a polling place is deemed inaccessible, you are entitled to bring a person of your choice to assist you in the voting process… Simply fill out the Declaration of Need of Assistance form to specify the individual you have selected and submit it to your County Board of Elections.” The voter then needs to bring this form to the polling site, sign it (or make their mark), then have a witness and the Judge of Elections sign the form. There are 57 million Americans with disabilities, according to the latest census data, roughly 19 percent of the population. They in turn have millions of family members, caregivers and professionals supporting them. Now, with a large voting constituency, why is there still such a convoluted, potentially humiliating process for anyone with disabilities needing assistance when voting? The Arc – along with our advocacy partners – has done a lot of good work to improve the voting rights of people with disabilities; but we must, and we will, do more. Send Maureen comments at mcronin@thearcpa.org. Pennsylvania Message
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Systems Advocacy & Government Affairs … In Brief
Block Grant Pilot As it is stated in the FY 2012-13 Governor’s Executive Budget, by FY 2016-17 counties will be able to use 100% of the community based funding legislatively appropriated for person with intellectual disabilities for meeting needs in other human service areas. This could happen sooner if counties are granted waivers. Guidelines are being developed by DPW. Our concern is that people with intellectual disabilities will lose critical services such as emergency services, respite and individual supports and that many recreational programs will be lost. The Arc of PA has developed talking points for chapters and interested individuals which can be requested by contacting The Arc of PA office. Legislative Fall Session Schedule SENATE: September 24, 25; October 1, 2, 3, 15, 16, 17; November 14 (Leadership Elections) HOUSE: September 24, 25; October 1, 2, 3, 4, 15, 16, 17, 18; November 13, 14, 19, 20 Arc Chapter Survey 2012
Adult Protective Services (APS) Advocates rejoiced when APS was signed into law October 7, 2010 and when Governor Corbett allocated $1.7 million as startup funding in the approved state budget for FY12-13. DPW is currently developing draft regulations which will then go through the regulatory review process before becoming final. Remind your legislators that Pennsylvania has not yet implemented an Adult Protective Service system and full funding is needed so statewide enactment can be achieved. Financial Management Services (FMS) According to a communication put out by the Office of Long Term Living (OLTL), “the Department of Public Welfare (DPW) is in the process of finalizing a grant agreement with Public Partnerships to provide a single source for Financial Management Services (FMS) in three distinct regions of the state beginning January 1, 2013.” We have not seen any communication from DPW to date towards those utilizing Acumen as a Fiscal Management Service. Copayments for Medical Assistance The Arc of Pennsylvania urges DPW to reconsider imposition of proposed copayments for medical services. Copayments are clearly beyond the means of families with incomes near 200% of the poverty line, and it would have a substantial financial impact on families with incomes well beyond this limit. If copayments are to be imposed, they need to be modified significantly in order to avoid placing undo hardships on families.
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Arc Chapter Survey 2012
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This graph reflects data collected in a recent survey of local chapters of The Arc in PA by our intern Megan Shingleton. The high rate of return of the surveys (24 responded) is very much Series1 appreciated.
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Services Provided by Chapter
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We will be able to utilize the information collected to represent the interests of all chapters in important discussions with state policymakers. Pennsylvania Message
VOTING, continued from Page 1 *Photo ID cards from an accredited Pennsylvania public or private institution of higher learning *Photo ID cards issued by a Pennsylvania care facility, including long-term care facilities, assisted living residences or personal care homes If you do not have one of these IDs, and require one for voting purposes, you may be entitled to get a “Photo ID Card for voting purposes” free of charge at a PennDOT Driver License Center. If you have a birth certificate (with a raised seal) and a Social Security card, PennDOT will provide you a Photo ID Card. If you have a Social Security card and two proofs of residence (such as a deed, lease, tax bill or utility bill) and you were born in PA but do not have a birth certificate, PennDOT will forward your application for a Photo Identification Card to the PA Department of Health to confirm your birth records are on file. PennDOT will then send you a letter confirming your birth records and you may return to the PennDOT Center for your free Photo ID Card. Verification from the Department of Health may take up to 10 days. To find the Driver License Center nearest you, and to learn more about what supporting documentation you will need to get a Photo ID Card for voting purposes, visit PennDOT’s Voter ID Website www.dmv.state.pa.us/ voter/voteridlaw.shtml or call the Department of State’s Voter ID Hotline at 1-877-VotesPA (868-3772). If you have received a recent letter from the PA Department of State about the Voter ID law and new procedures, that is a likely indication that there is a discrepancy between your voter registration and other documents on file with the state, including your name, address, or birth date. You should visit www. VotesPA.com to confirm that your information is correct. Department of State - for information on voting registration and procedures www.VotesPA.com 1-877-VotesPA (868-3772) PennDOT - for information on obtaining a state-issued Photo ID Card for voting purposes www.dmv.state.pa.us/voter/voteridlaw.shtml
Student Loan Forgiveness for Public Service Individuals working in public service employment, including employees of The Arc, may qualify for loan forgiveness under the federal Public Service Loan Forgiveness (PSLF) Program. PSLF, established by Congress in 2007, offers forgiveness on the remaining balance of non-defaulted federal Direct Loans, provided borrowers meet eligibility requirements, after making 120 on-time monthly payments. Since qualifying payments must have been made after October 1, 2007, actual loan forgiveness could begin in October 2017. Further information is available at www.MyFedLoan.org/PSLF. Pennsylvania Message
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Include Me From The Start Include Me From The Start, The Arc of Pennsylvania’s inclusive education initiative, is working across Pennsylvania to increase and improve the inclusion of students with significant disabilities in regular education settings. The program is building on its past experience to expand its services. The 2012-2013 school year is off to a great and busy start! Include Me From The Start With the start of school Include Me From The Start consultants are providing trainings, assistance, and support in classrooms across the state with some exciting new changes. This year the Bureau of Special Education approved Include Me to work across all grades, so Include Me consultants are providing inclusion support in grades K-12. Include Me is providing support in 19 school districts that volunteered to participate in the program this school year. Also new to Include Me this year is the creation of Model Inclusion Districts. Bangor Area, Greater Johnstown, Derry Area, and the Mechanicsburg Kindergarten Academy each excelled in their inclusive practices during their past two years with Include Me. This year they are opening their doors to other principals, teachers, and school officials to be a resource for inclusion practices. Contact Include Me if you would like to be connected with one of these Model Inclusive Districts. Include Me Preschool Include Me is excited to be expanding its inclusion expertise to work with preschoolers with significant disabilities across Pennsylvania. Include Me has partnered with the Office of Child Development and Early Learning in a new initiative to offer inclusion Include Me consultant Stacy Greusel joins Pam Klipa support and training to preschools across the and Include Me Director Rita Cheskiewicz to present Commonwealth. Include Me Preschool consultants highlights of the 2011-12 school year activities. will work with Early Intervention teams in several counties in Pennsylvania, offering resources and knowledge to improve inclusive practices in typical preschool settings. Include Me is thrilled to be able to collaborate with OCDEL, Early Intervention Technical Assistance consultants and Intermediate Unit Early Intervention Supervisors and staff. Follow us on Facebook (Include Me From The Start) and Twitter (@IncludeMePA) for all the latest updates! Learn more about Include Me From The Start at www.includemepa.org
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Pennsylvania Message
Ashley Brubaker Raises Funds for Children’s Miracle Network Ashley Brubaker, a member of The Arc of Susquehanna Valley, has been raising money for the Children’s Miracle Network for eight years. On August 8, she presented a check for $26,531 to the Janet Weis Children’s Hospital, the result of her latest silent auction fundraiser. In total, she has raised more than $104,000 over the eight years. This is how Ashley describes herself on her website www. ashleysauctionwebsite.com: “I have Autism and the Children’s Miracle Network helped me. I want to raise money to help other kids. I am 24 years old from Selinsgrove, PA, and use a DynaVox to talk to people and to write this letter.” Way to go, Ashley!
Arc eRecycling in Clarion and Venango Counties The Arc of Clarion and Venango Counties was awarded one of 10 grants from the new eXplore eRecycling initiative at The Arc of the United States. With the grant, the chapter is developing an ewaste collection and disposal service, which is managed and operated fully by people with disabilities. The national initiative is funded by a grant from the Walmart Foundation. Arc eRecycling of Clarion and Venango Counties will collect ewaste for disposal and recycling from individuals and businesses in the community. The employees of the business are responsible for the development of a business plan, operating processes, hiring and personnel management, development of payment systems, establishment of bookkeeping methods for the business and all other aspects of operation. LEFT: The Arc eRecycling of Clarion and Venango Counties team (the initial employees who are developing the business) are Nathan Deshner (manager), Ken Repp, and Justin Campbell.
Pennsylvania Message
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Board Begins Strategic Planning Leaders of The Arc from across Pennsylvania gathered in Harrisburg on September 7 to begin the process of strategic planning. Participants reviewed the history of The Arc and the history of supports for people with disabilities and their families in Pennsylvania. Through a variety of group building activities, the advocates developed themes for the future of The Arc in Pennsylvania. The next day, the Board of Directors took those reflections and themes and used them to help identify a vision for The Arc of Pennsylvania. This work serves as the basis of the strategic plan the Board is now developing to present during the annual membership meeting next spring. During its business meeting, the Board welcomed representatives of the State Council of the Knights of Columbus - former State Deputy and current Arc Board member Wayne Freet, joined by Measure Up Chair Thomas Pearson - who made a check presentation for more than $138,000, the result of their 34th annual Measure Up campaign (see article on page 12).
ABOVE: New Board member Christy Lewis is sworn in by Board President Jeanne Downey. LEFT: Arc advocates brainstorm about the future of The Arc in Pennsylvania.
PCE Discusses Good Governance The Pennsylvania Conference of Executives (PCE) met on September 7 in Harrisburg. Tish Mogan from PANO was the guest speaker. She discussed the benefits of being a PANO member, the resources available and the Standards for Excellence. As a gesture of collaboration and wanting to support good governance with PA Arc chapters, PANO will provide to any local that is not a PANO member the PA Legal Requirements Checklist free of charge. (The nonmember fee for this packet is usually $20.) This is the packet that would have the most differences from the national version since it incorporates PA laws governing nonprofit corporations, employee law, fundraising and lobbying regulations. If your chapter would like a copy of this packet and you are not a PANO member, please email Tish Mogan at tish@pano.org to request the packet. If you are a PANO member you can download the packet from PANO’s website www.pano.org. Page 8
Pennsylvania Message
Toy Guide Released
Toys“R”Us, Inc. recently announced the release of the 2012 edition of the Toys“R”Us Toy Guide for Differently-Abled Kids, an easy-to-use toy selection resource for those who know, love and shop for children with special needs. Each of the nearly 100 toys featured in the 64-page resource has been selected in partnership with National Lekotek Center, a nonprofit organization dedicated to making play accessible to children of all abilities. All items in the Guide are paired with color-coded icons to indicate the skills that can be developed during playtime. These toys have been specially selected for their ability to help kids build critical skills, including fine and gross motor, social, creativity, auditory, language and more. Customers who would like to conduct research and make purchases from home can also take advantage of the “shop by skill” option online. Copies of the Guide are available at all Toys”R”Us® and Babies”R”Us® locations nationwide. A “flippable” digital version, as well as a downloadable version in both English and Spanish, is available online at www.Toysrus.com/DifferentlyAbled. If you represent a special needs organization or are a special needs educator or therapist, you may e-mail DifferentlyAbled@toysrus.com to receive copies in bulk, free of charge for redistribution.
National Convention in Washington, D.C. in October Registration is now open for the 2012 National Convention and International Forum in Washington, D.C. October 25-28. This year, The Arc will be joined by Inclusion International, a global federation of family-based organizations advocating for the human rights of people with intellectual and developmental disabilities. This is an incredible opportunity to connect with others in the intellectual and developmental disability community at this annual gathering of The Arc’s membership, chapter staff and volunteers, professionals and experts in the field and individuals with I/DD and their families. Check out the full Convention Schedule, register, and find out more about the beautiful host city at www.thearc.org.
Achieving Inclusion Across the Globe
The National Convention and International Forum October 25-28, 2012 Washington, D.C.
Register now at www.thearc.org Pennsylvania Message
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“TECH TALK” Are You Ready?
Emergency Preparedness, Assistive Technology and Persons with Functional and Access Needs by Jamie Arasz Prioli, RESNA ATP Institute on Disabilities Temple University 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: o To assist you with mobility? o To help with your personal care? o To help you during meal time? o For communication? o For transfers? o For transportation? o For reading or listening? • Plan to make it on your own for at least three days. Compile a list of the AT critical to support your physical needs 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.
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• Think about how you might go about obtaining a short-term (or long-term) replacement for your AT, if needed. 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: • 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.gov • 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 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
Pennsylvania Message
The Arc of PA Board of Directors
LEARN MORE/ DO MORE Legislative Alerts Visit our website www.thearcpa.org and click on the “Action Alert” button to register for email alerts sent directly to you when The Arc needs you to speak up about state policy issues.
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.
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: dickinson@thearcpa.org
Pennsylvania Message
Jeanne Downey – Erie President Christopher Gorton – Dauphin 1st Vice President Nancy Richey – York 2nd Vice President Sara Wolff – Lackawanna Secretary Ken Oakes – Philadelphia Treasurer Paul Conway – Montgomery Past President Christy Lewis - Washington PCE Representative Frank Bartoli - Delaware At Large William Burke – Lackawanna At Large Wayne Freet – Adams At Large Karen Grady – Lehigh At Large Sarah Holland – Lancaster At Large Betsy Messina – Chester At Large Michael Marsh – Montgomery At Large Nancy Murray – Allegheny At Large Richard Shoch – Northumberland At Large Jean Searle – Philadelphia At Large Duane Stone – York At Large Joshua Stranix – Schuylkill At Large Pamela Zotynia – Luzerne 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
Staff
Executive Director Maureen Cronin Training & Special Education Coordinator Pam Klipa Public Policy Advocate Maureen Westcott Director, Include Me From the Start Rita Cheskiewicz Office Manager Gwen Adams Administrative Assistant Amy Houser Administrative Assistant, Include Me From The Start Ashlinn Masland-Sarani Development & Public Relations Consultant Todd A. Dickinson 101 South 2nd Street Suite 8, Executive House Harrisburg, PA 17101 717-234-2621 www.thearcpa.org Page 11
The Arc of Pennsylvania Suite 8 - Executive House 101 South Second Street Harrisburg, Pennsylvania 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.
Thank You Knights! Knights of Columbus councils across Pennsylvania raised money for The Arc during the 34th annual Measure Up campaign. Many Knights spent their weekends collecting outside local grocery stores in bad weather, while others served hundreds of spaghetti dinners, all to benefit the mission of The Arc.
Knights of Columbus Wayne Freet (left) and Thomas Pearson (right) present the proceeds of the 34th annual Measure Up campaign to The Arc of Pennsylvania Board President Jeanne Downey.
Former State Deputy and current Arc Board member Wayne Freet joined Measure Up Chair Thomas Pearson in presenting a check for $138,250 during the September Board of Directors meeting in Harrisburg. The total raised in the campaign’s 34-year history surpassed $5.6 million. Please thank your local Knights for all their support of The Arc.