Spring 2013 - Volume LII, No. 3 Quarterly Publication
Pennsylvania Message Advocates Join Together for Annual SAGA Day
(Above) Acting Secretary Mackereth was introduced by Board Director Joshua Stranix. (Right) She took many questions from self-advocates about improving services and closing institutions.
Acting Secretary of the Department of Public Welfare Beverly Mackereth addressed an audience of members from local Arc chapters and partner advocacy organizations as part of the The Arc of Pennsylvania’s 2013 SAGA Day (Systems Advocacy and Government Affairs) on April 9 in Harrisburg. Mackereth, who has since been nominated by Governor Corbett to be the Department’s next Secretary, told the crowd that she shares many of the same goals as our community, is working to find ways to improve services for people with disabilities, and looks forward to having a good relationship with advocates. She provided an update on negotiations with the federal government regarding the expansion of Medicaid, and she said she would support changing the department’s name (see page 4) if the costs are not too high. SAGA, continued Page 6
President’s Message - Jeanne Downey If you’re ready, we can shake the world Believe again, it starts within We don’t have to wait for destiny We should be the change that we want to see If You’re Out There by John Legend This past year has been energizing for The Arc of Pennsylvania. During the 2012-2013 budget process, The Arc of PA was seen as the leader in advocacy efforts across the state and we clearly influenced the budget outcomes. In Feb. 2013, Governor Tom Corbett went to ACHIEVA to highlight the sections of his 2013-14 budget proposal that would benefit people with intellectual and developmental disabilities and their families, including funds to reduce the waiting list for community services. “Across this state, I have met children and young adults with intellectual and physical disabilities, and I always leave their company inspired,” Corbett said. The 2013-2014 state budget is currently in play and ALL of us need to engage our Legislators and other governmental officials. The Arc chapters, members, families, and individuals have definitely made their voices heard around the State and they 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. But we can’t slow down our efforts - We should be the change that we want to see. In the Fall of 2012, The Board and other members of The Arc drafted our next set of Strategic Initiatives. These Initiatives which will guide our efforts for the next several years and will define our priorities as an organization so that we can continue to effect change. These strategies will advance our efforts as the leading advocacy group in PA for individuals with intellectual and developmental disabilities (IDD). The staff of The Arc has drafted key objectives and work plans that The Board will review at our next Board Meeting. There is so much for us to focus on and we need to make sure our priorities are clear to ALL of us. Our Executive Director, Maureen Cronin, has successfully completed her first full year as our Leader. Maureen took the reins in Dec. 2012 and hasn’t stopped since! She has attended numerous local Chapter meetings and events, as well as participating in other agency events, including The Pennsylvania Knights of Columbus meeting and Education Law Center Awards. We expect our Executive Director to be the “face” of The Arc and Maureen has consistently met that expectation. The new Arc of PA office is now operational at Pennsylvania Place. This new office allows The Arc to expand our support for advocacy efforts by offering meeting room space to a variety of organizations, such as selfadvocacy groups. The staff has also focused on the 60+ year history of The Arc of PA in the décor. I know I have said this before, but it needs repeating - I am so honored to be a leader in The Arc of PA. Our local chapters, self-advocates, families, and others are passionately advocating for what is needed to insure that ALL individuals are part of their communities. I am inspired every day by what you all are doing. Thank You! Jeanne Downey is from Erie County, Pennsylvania. She will begin her second 2-year term as President of The Arc of Pennsylvania in June 2013. Page 2
Guest Message - Maureen Westcott Note from Maureen Cronin: Maureen Westcott, Public Policy Advocate at The Arc of PA, is leaving to become Executive Director of The Arc of Lancaster County. I asked her to write a short article about her time with The Arc, in lieu of my Executive Director report (to get her ready for her coming responsibilities). We are happy for her in this move, but we will truly miss her passion and perspective in our office.
I came to The Arc of PA as the Public Policy Advocate almost five years ago. As a parent of a woman with an intellectual disability, I was not new to the world and work of The Arc. I even knew some of the people that I would be working with, since I was involved in regional stakeholder groups prior to taking the position. I never realized when I sat behind my desk that first day September 8, 2008 how busy I was to be and all that I was to learn! My responsibilities over the last five years included to “show up and speak up” at coalition meetings for issues such as Adult Protective Services (APS), death penalty for individuals with ID, dental issues, IM4Q, transportation, Money Follows the Person (MFP), housing, employment, Medicaid and Medicare - learning the difference between dual-eligibles (Medicaid/Medicare) and dual-diagnosis (ID/MH). I helped write policy, regulations, and curriculums. I offered comments on draft bulletins and policies at a state and federal level. I met with legislators and testified at public hearings. I wrote, managed and reported on grants. I assisted local Arc Chapters on various issues, staffed Board committees, and was a resource to folks calling into the office. And don’t forget the advocacy during budget time and around the Human Services Block Grant Pilot. These activities were not done alone. I was part of an awesome team at The Arc of PA, who welcomed me as a newcomer, offering help and support as I came up to speed on the many issues. I enjoyed working with and learning from each of them. The Arc of PA team is small, but very effective with our areas of expertise complementing each other. I got to know and appreciate the individuals on the committees and coalitions that pour their heart and soul into making life better for people with disabilities. I’m grateful to everyone who taught me the principles of Every Day Lives and inclusion. I look forward to continuing our collaborative efforts. Last but certainly not least, are the self-advocates who challenged my thinking, not letting me become complacent with how things are now. I am awed by what they have done to bring awareness to disability issues. What excellent role models they have been for my daughter, Elise, as well as others. There is power in their message of self-determination, making sure their voice is leading the dialog for improving the system of support. I loved my job at The Arc of Pennsylvania, and am thankful my next step is building on these last 4.8 years. Being the Executive Director of The Arc of Lancaster County will require me to use the knowledge and insight I have acquired in the more focused environment of county advocacy. I will enjoy being more directly involved with and getting to know those who use the ID support system. So it is not the end of the book – I’ll see you in the next chapter! Pennsylvania Message
Systems Advocacy & Government Affairs … In Brief Senators Look to Rename DPW Senators Bob Mensch (R-Montgomery) and Jay Costa (D-Allegheny) introduced legislation (SB 840) to rename the Pennsylvania Department of Public Welfare to the Department of Human Services. It is identical to HB 993 sponsored by Representative Thomas Murt (R-Montgomery). The legislation has the support of five former PA Governors and six former DPW Secretaries. More than 110 Senators and Representatives (from both parties) have signed on as cosponsors of the two bills. According to Campaign for What Works, “Over 93% of the people DPW serves are older Pennsylvanian’s needing long term care, family members Senator Bob Mensch with intellectual disabilities, neighbors with debilitating mental health problems, friends suffering from addiction, and mothers trying to escape violent relationships.” The bill utilizes a phased-in approach, only making changes to signage, computer systems, and supplies when they are ready for upgrade or replacement. A copy of the bill can be found at www. legis.state.pa.us and entering the bill number in the box at the top of the site.
Adult Protective Services (APS) Coalition DPW has hired Winter Roberts to manage the Adult Protective Service Program and she will work in the Bureau of Human Services Licensing. Twenty-nine Dept. of Aging Investigators are being trained to handle cases involving those not currently receiving Intellectual Disability services. It was reported to us that the Request For Proposal (RFP) was revised, including the conflict language, based on suggestions made (The Arc of PA submitted comments) and the RFP will be posted in the next two months. A pre-bid conference will be held. DPW decided to proceed with the RFP, not waiting until the regulations are finished, with language included in the RFP stating if there are inconsistencies between the contract and the regulations, the regulations will govern. The draft regulations will go out for public review before being submitting formally. It is expected that the agency(ies) will be selected, staffed hired and trained, and a system in place by July 2014. ODP Future’s Planning Process Office of Developmental Programs (ODP) Deputy Secretary Fred Lokuta gathered an Extended Team of stakeholders within the statewide developmental disabilities system to formulate recommendations towards services system redesign which are then sent by stakeholders to the broader community for comment. Meetings occur monthly. Updates can be found on The Arc’s website. Employment Data State Data: The National Report on Employment Services and Outcomes provides statistics over a 20-year period from several national datasets that address the status of employment and economic self-sufficiency for individuals with IDD. It is available at www.statedata.info/statedatabook
Special Ed Funding Bill Passes After years of negotiation and near misses, the special education funding bill (HB 2), introduced by Representative Bernie O’Neill (R-Bucks), moved easily through both chambers, receiving unanimous approval in the House and the Senate with final passage on April 9. The bill creates a state commission, which now has a six-month window to develop a funding formula, likely starting from the formula The Arc has endorsed for six years. Governor Corbett signed it (Act No. 3) on April 25, and his office expects him to host a ceremonial signing soon. Page 4
The Arc’s 2013 National Convention August 2 - 5 | Bellevue, Washington What does it take to sustain momentum in your life, in your work, and in the movement for people with intellectual and developmental disabilities? Join The Arc for a National Convention filled with innovation – new information, new programs, new technology, and new ways for you to keep moving forward toward your goals! Register now to attend the premiere event for the intellectual and developmental disability movement and join hundreds of other individuals, families, advocates, experts and professionals in the field for three days of informative sessions, unique events and opportunities to connect. Don’t Miss: • Cutting-edge technology demonstrations! • Sessions focused on advocacy, using technology and innovations in family support! • A vibrant Marketplace with goods and services catering to you! • Meet-and-greet events just for self-advocates and siblings! • The Arc & Sprout National Film Festival! Book now to take advantage of early registration discounts and special room rates at the Hyatt Regency Bellevue on Seattle’s East Side. Other discounts for individuals with I/DD and members of The Arc!
Register today @ www.thearc.org/convention Pennsylvania Message
SAGA, continued from Page 1
Deputy Secretary Fred Lokuta also addressed the group and took questions about changes at DPW. He spoke of his admiration for The Arc and its legacy of advocacy for people with intellectual disabilities. He also explained the Futures Planning Process he is using as the basis for his officeâ€™s priorities. Dr. Mary Jo Podgurski led a frank and enlightening discussion on sexuality, including appropriate terms, boundaries, and respect for oneâ€™s own body and for others. Once again, SAGA Day helped inform and energize disability advocates from across Pennsylvania.
(Top) Self advocate Elise Westcott introduced Deputy Secretary Fred Lokuta during SAGA Day. (Middle) Advocates from Chester County enjoyed the day of training and information. (Lower right) Self advocate and new Arc of PA staff member Matt Stinner - here with Executive Director Maureen Cronin - introduced Rep. Gene DiGirolamo (see back page). Page 6
(Top) Incoming Board Secretary Jean Searle - here with Executive Director Maureen Cronin - introduced Dr. Mary Jo Podgurski. (Middle) Dr. Podgurski is a certified sexuality educator and she believes that each person is a person of worth. (Lower) Many of our disability advocate partners from Vision for Equality and the PA Waiting List Campaign joined in the discussions at SAGA Day.
“TECH TALK” Assistive Technology for Communications -
Low-Tech AAC Low-tech supports includes pictures and objects you can make yourself. These can be arranged in cards, books, or boards to help a person communicate.
Talking With Pictures
by Carrie L. Leonhart, M.S., CCC-SLP Augmentative Communication Services Coordinator Pennsylvania’s Initiative on Assistive Technology (PIAT) Institute on Disabilities at Temple University Assistive Technology for Communication (also called AAC; Augmentative and Alternative Communication) is any form of communication other than spoken/oral language used to express thoughts, needs, wants and ideas. It is using alternate methods to “talk,” including gestures, pictures, recordable devices, and even talking computers. Here are a few facts about AAC, from the website www.CommunicatePA.wikispaces. com
Making your own communication boards can be easy! Here are some helpful tips: • Find pictures in newspapers, magazines, or circular advertisements. Just cut them out and tape or glue them to your communication board or book. This works especially well for pictures of foods or objects (e.g., toy, tv, movie). AAC includes a range of communication strategies and • Use the “Visuals Engine” on http://connectability. supports: ca/visuals-engine to design and print your • AAC can be no-tech to high-tech devices. These communication boards. Create a free log-in to use techniques and tools serve to minimize or compensate this resource. It lets you make boards with 1-16 for communication difficulties. AAC includes all communication acts that supplement (augment) or replace (alternate) spoken communication. Techniques can be used to support a person’s expression and/or his understanding of communication. • These approaches can help individuals who have functional communication impairments, or complex communication needs. Communication challenges may arise from developmental conditions (e.g., cerebral palsy, autism spectrum disorder, intellectual disability) or acquired conditions (e.g., aphasia postRESOURCES FOR ASSISTIVE TECHNOLOGY stroke, Lou Gehrig’s disease or ALS). • A person’s communication needs will change across PA Assistive Technology Foundation—1-888-744-1938 time; so does technology, our understanding of what (voice) or 877-693-7271 (TTY) or 484-674-0510 (fax) or works, and the person’s experiences. Just because email firstname.lastname@example.org Website: www.patf.us a person “tried AAC” in the past, doesn’t mean we shouldn’t take another look now. There may be new PA Initiative on Assistive Technology—1-800-204-7428 (voice) or 866-268-0579 (TTY) or email ATinfo@temple. ideas, attitudes, or devices that can help. • Review the range of AAC technologies at www. edu CommunicatePA.wikispaces.com/AAC+101. There PA Telecommunication Device Distribution Program are examples of Low-Tech, Mid-Tech, and High-Tech 1-800-204-7428 or email TDDP@temple.edu supports, ranging from simple to complex technology. http://disabilities.temple.edu/programs/assistive/ piat
images per page. You can use their pictures, or upload your own. You can even add a text label. •Download and install the Picto-Selector program (www.PictoSelector.eu/index.php) on your computer. This free software gives you access to 1000s of picture symbols. It also allows you to use your own photographs and re-arrange the boards as many times as needed. You can save the file to make changes later. You can also save or print as a PDF file. Mid-Tech AAC Mid-Tech supports display pictures and add recorded sound to support communication. Some local stores may even carry recordable products that can also be used as AAC!
• Look for options available at www.LearningResources. com, including “Talk Point” buttons and “Talk Block” squares that record and hold a small picture. On the East Coast, Becker’s Teacher Supply stores may carry these products. • Hallmark sell recordable options. You can be creative and re-purpose these items for use as communication. Search stores or online (www. Hallmark.com) for the term “recordable” to find books, photo albums, and photo frames.
High-Tech AAC High-Tech devices are talking computers that display pictures. The screen can change to display 1000s of pictures. The computer can also generate speech (e.g., speech-generating device, like the voice on a GPS) to assist with communication. • There are many companies that manufacture and sell speech-generating devices in the US. For more information about high-tech AAC devices, see www.CommunicatePA.wikispaces.com/ Product+Resources. • You can also visit www.AACTechConnect.com and access the free trial of “Device Assistant” to learn about available features of AAC equipment. This tool helps you match devices to the features you want. Mobile Technology (iPad, Android tablets) for Communication
New technologies for communication supports include mobile technologies (e.g., smart phones, iPod Touch, tablets) running apps/software for communication. These new, easily-available options are opening doors for many people with communication needs! Read more on the “iTechnology” page at www. CommunicatePA.wikispaces.com
The Arc Holds Board Meeting and Annual Membership Meeting During The Arc of Pennsylvaniaâ€™s Board meeting on April 8, new presidential appointee Kurt Kondrich was sworn in (upper left). Then new officers and Board members were elected during the subsequent annual membership meeting. Jessica Capitani, Cynthia Dias, Cecilia Lee, and Philip Rosenbauer will join the Board in June. Jeanne Downey will serve another term as Board President, with a new team of officers: Kenneth Oakes (1st Vice President), William Burke (2nd Vice President), Jean Searle (Secretary), and Michael Marsh (Treasurer). Photos: Douglas Pickens (left), from Arc Human Services presented his Team concept during the annual meeting providing services and supports, allowing both the consumers and their Team members to feel safe. Board Secretary Sara Wolff (lower left) introduced Pickens. (Below) Incoming 1st Vice President Ken Oakes and Board members Nancy Murray and M.J. Bartelmay discuss the meeting agenda with Arc staff Pam Klipa and Rita Cheskiewicz.
The Arc of PA Board of Directors
Legislators and Advocates Mix at Legislative Reception Legislators joined advocates from Arc chapters throughout the state during The Arc of Pennsylvania’s annual Legislative Reception on April 9, including Representatives Ted Harhai (above) and Tom Hennessey (below).
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 Kurt Kondrich – Allegheny At Large Betsy Messina – Chester At Large Michael Marsh – Montgomery At Large Nancy Murray – Allegheny 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
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: email@example.com
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 Self Advocacy Engagement Consultant Matthew Stinner Development & Public Relations Consultant Todd A. Dickinson Suite 403 — Pennsylvania Place 301 Chestnut Street Harrisburg, PA 17101 717-234-2621 www.thearcpa.org Page 11
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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.
Rep. DiGirolamo is Legislator of the Year The Arc of Pennsylvania selected state Representative Gene DiGirolamo as its 2013 “Legislator of the Year”. As Chair of the House Human Services Committee Representative DiGirolamo is an invaluable champion for the rights of people with disabilities. He consistently fights for sufficient funding for I/DD services and has been the most vocal critic of plans to create a County Human Services Block Grant because it threatens stable funding.
Representative Gene DiGirolamo was named The Arc of Pennsylvania’s Legislator of the Year. He addressed The Arc’s SAGA Day on April 9 (above) and was presented the award that evening at the The Arc’s annual Legislative Reception.