PA Message Summer 2013

PennsylvaniaMessage

Summer 2013 - Volume LII, No. 3Quarterly Publication

Final Budget Includes Waiting List IncreaseOn June 30, the General Assembly passed, and the Governor signed, the $28.375 billion Fiscal Year 2013-14 budget a few hours before the constitutionally-mandated deadline. Overall spending in the new budget is increased by $645 million (2.3 percent) over the previous year, which is $64 million less than the Governor’s budget request in February. On disability issues, the final budget largely reflects the Governor’s February proposal.

Of concern to the disability community, legislative language requiring expansion of Medicaid and changing the name of the Department of Public Welfare passed the Senate but were removed by the House. These issues will need to be addressed again when legislators return to Harrisburg in September.

Community Waiver Program - $19,867,000 was provided for home and community-based services for 380 people on the Wailing List, 700 graduating students from special education programs, and moving 100 people out of state centers. An additional $1,497,000 was included “to provide home and community-based services for 118 additional Individuals with autism spectrum disorders”.

Human Services Block Grant – The block grant pilot program approved last year will be expanded from 20 to 30 counties. Those selected will be able to combine funding and redistribute it as they feel is needed for six programs: community mental health services, behavioral health services, intellectual disability community base services, county child welfare special grants, homeless assistance programs and drug and alcohol services. The Governor proposed this pilot be expanded to all counties that want to participate. The Arc is concerned about expansion of the Block Grant prior to an evaluation of its impacts in the first year of implementation. The Arc has a long history of advocating for the funding currently found in the Intellectual Disabilities appropriation and is concerned about any process that takes this funding away from persons with intellectual disabilities particularly with over 4,000 individuals waiting for emergency services.

Budget - continued Page 5

Pennsylvania Message

WE ARE THE LAND OF THE FREE, BECAUSE OF THE BRAVE

As we celebrated Independence Day on July 4th, I was reminded of all the brave men and women who have fought for the rights we now have in the Unites States. They have never backed down when our nation was threatened and our values and beliefs were challenged. Our forefathers understood the price of freedom when then drafted the Declaration of Independence, including “We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.”

It made me reflect on what we, as The Arc of PA, have done over these past two years of my term as President. We all have shown amazing courage and

bravery as we have navigated changes in our Executive Director, the Governor of PA , many elected and appointed officials, Board members, and local chapters. Through all this, what we do as Arc advocates stayed true. The volume of voices from families and self-advocates from across the state made positive things happen when there seemed to be little to no hope for a good outcome. I applaud those who were brave enough to tell their personal stories to those in positions to make things better for all of us.

The Executive Committee and The Board of Directors have been key is developing the strategic plan for the future direction of The Arc. Not all of our opinions are the same, but that is the beauty of why we are successful. We have accomplished so much, but there is always more to do. The “personality” of this current Board is amazing and we can work with each other to appreciate all sides of all stories. And this well-rounded view will enhance what we need to do as an advocacy organization.

The staff at The Arc of PA has been exceptionally brave over the course of my first term as President. They were patient as we planned, recruited, and hired their new boss and they managed the transition with enthusiasm and confidence. They not only do what needs to be done, but they anticipate next steps and continually strive to make The Arc the best. And even when things didn’t work out as planned, they keep the biggest smiles on their faces!

I believe that The Arc of PA will continue to lead the advocacy efforts in Pennsylvania and we will always promote creating more opportunities to improve the lives of people with intellectual and developmental disabilities. And we hold on to the belief that ALL people are created equal and ALL people should have the rights of life, liberty, and the pursuit of happiness!

Jeanne Downey is from Erie County, Pennsylvania.She began her second 2-year term as President of The Arc of Pennsylvania in June 2013.

President’s Message - Jeanne Downey


Executive Director’s Message - Maureen CroninWe Need APS. It Will Save Lives

A horrific case of abuse was recently reported in the Scranton Times-Tribune: “Mom, daughters charged with starving family member with Down syndrome to death … the 32-year-old Taylor man with Down syndrome wasted away to 69 pounds because his mother and sisters were starving him to death.” Gruesome details of scabies, lice, open sores and horrible living conditions were provided in subsequent reports. Readers were shocked and appalled, while advocates were devastated and discouraged. Some of my colleagues were so horrified they could barely think about it, let alone talk about it. Everyone asks, “How could this have happened? What protections should have been in place?” Some have said that even a fully functional Adult Protective Services system would not have helped because the family hid this man; neighbors didn’t even know he lived in the house.

After thinking out the report for a while, I believe that Adult Protective Services (APS) could have helped. Today there is common awareness of Child Line 800-932-0313, that abuse of children is wrong, and there are people who you can call for help. If that same awareness existed for vulnerable adults being abused, someone may have felt obligated or comfortable in reporting what may appear to be a level of abuse. The Times-Tribune reported “a relative said Susan Gensiak didn’t like her male children.” Had the relative known about a hotline to report abuse of adults, she may have taken the opportunity to anonymously report her suspicions. Child Line doesn’t prevent all children from abuse but we know it has had tremendous impact on reducing child abuse. The Department of Public Welfare recorded an average of 460 calls per day before news broke about allegations of child abuse by former Penn State assistant football coach Jerry Sandusky. After that news broke, calls jumped to almost 1,000 per day.

Implementation of an APS system in PA has been slow. The Act was signed in 2011 and money was set aside in the 2012-13 budget. Yet we still don’t have a viable APS system. Development of regulations has stalled. A draft Request for Proposal (RFP) was circulated for comment but has not been issued. There are more and more serious cases coming to light. The Arc appreciates that the Department of Public Welfare (DPW) is committed to developing an Adult Protective Services system as it fulfills its responsibility of addressing the full gamut of human service needs across all ages. However, resources have not been made available for them to have a sufficient number of staff devoted to moving the regulations and RFP through the required regulation and procurement process.

We call on those with the authority to increase personnel resources dedicated to the development of an APS system. Time is of the essence, as more and more horrific abuses are being reported. The Department has indicated that the RFP will be made available shortly. A vendor needs to be selected and in place as soon as possible to promote a hotline number, train staff and be fully functional. Meanwhile the temporary use of Area Agencies for Aging needs to be in place for APS across the entire state.

Send Maureen your comments at [email protected].


SystemsAdvocacy &GovernmentAffairs… In Brief

Many of The Arc of Pennsylvania’s policy issues and bills of interest were added and contested in the push to pass the Public Welfare Code through the House and Senate. The Public Welfare Code must be passed in proximity to when the state budget is passed, to ensure funding is available for the budget. Adding amendments to the Public Welfare Code is a mechanism for ensuring that issues are passed quickly and before the legislature breaks for the summer.

Block Grant Expansion Approved Expansion of the Human Services Block Grant program had support in the House, Senate, and administration. Senator Pat Vance (R-Cumberland) introduced SB 977 to make the Block Grant program available to all counties, but the bill did not move forward.

The Human Services Block Grant program has been approved to expand from 20 to 30 counties. The Senate included an amendment to the Public Welfare Code for the expansion of the Block Grant program, which passed on July 1st and was signed on July 8th.

DPW Name Change Moving GraduallyIn the ongoing push for changing the name of the Department of Public Welfare (DPW) to the Department of Human Services, there has been a positive development. HB 993, sponsored by Representative Thomas Murt (R-Montgomery), passed in the House on July 1st. The bill changes the name of DPW to the Department of Human Services and will be sent to the Senate for a vote in the autumn. SB 840 sponsored by Senators Bob Mensch (R-Montgomery) and Jay Costa (D-Allegheny), which is identical to HB 993, has not moved in the Senate.

It is unfortunate, however, that the House blocked a faster approval of the DPW name change. After gaining widespread support, the DPW name change was included as an amendment in the Public Welfare Code from the Senate. The House rejected the addition of this provision and stripped it from the Public Welfare Code, forcing a vote on the name change to wait until autumn when the Senate reconvenes.

Medicaid Expansion StallsThere was a legislative attempt to expand Medicaid in Pennsylvania. Representative Gene DiGirolamo (R-Bucks) introduced a bill requiring Pennsylvania to participate in Medicaid expansion (HB 1492), but thus far the bill garnered little support. Senator Vincent Hughes (D-Philadelphia) introduced similar language in SB 12, but the bill has not yet moved out of committee.

With broad support in the Senate, Senator Vincent Hughes (D-Philadelphia) led the effort to include an amendment in the Public Welfare Code to require Pennsylvania’s participation in Medicaid expansion. The House rejected the Senate language and the Public Welfare Code passed without this provision.

Senator Vincent J. Hughes


Arc Staff Learn From OVR CounselorExecutive Director Maureen Cronin and Policy & Development Director Ashlinn Masland-Sarani were recently invited by the Office of Vocational Rehabilitation (OVR) to shadow one of their counselors for the day and see the impact OVR can make for people with disabilities who are seeking employment. Here is Maureen’s report about the experience:

A few weeks ago, Ashlinn and I shadowed Vocational Rehabilitation Counselor Melissa Wert-Thrush to learn more about the important work of the Office of Vocational Rehabilitation (OVR). Melissa’s clients graciously allowed us to observe as she interviewed them concerning their personal experiences, job history, and career interests. OVR offers clients numerous job skills development opportunities including mock interviews, resume writing critique, and sessions focused on finding and applying for jobs. I was impressed with the variety of paid training opportunities OVR can connect clients with that fit their unique career interests, such as clerical training classes and janitorial training programs. We witnessed the importance of OVR in supporting people as they desire to support themselves and obtain sustainable, livable employment.

Ashlinn Moves to HarrisburgAshlinn Masland-Sarani, who worked for one year in Wilkes-Barre for the Include Me From The Start program, has moved to Harrisburg to become our new Policy & Development Director.

It is a privilege to continue being part of The Arc of Pennsylvania, whose history, mission, and impact I truly respect. My B.A. and M.A. in International Relations, Peace and Conflict Resolution, and Theology emphasized social justice and recognizing people who are marginalized. Working with Include Me From The Start gave me a deeper understanding and appreciation of the rights and struggles of people with disabilities and their families. I am thrilled to be able to use my skills in writing, policy analysis, research, and communication to support the mission of The Arc.

Along with my wonderful husband Joshua and our dog Obsidian, I’ve lived in Pennsylvania for 3 years. I get excited about local food, traveling, running, cooking and baking, tea, and Zumba. Please stop by if you’re in the area—I’m looking forward to meeting and getting to know you better.

State Centers - Despite the funds to move 100 residents with intellectual and developmental disabilities from state centers to community services, a $13.2 million increase for the state centers is also included, up from the $12.1 million increase requested by the Governor.

Special Education - This is the 6th year of flat funding for special education subsidy funding - forcing local school districts to cover the cost of living increases. However, the Governor’s proposed 0.50% deduction from all school districts’ special education subsidy to be put into a statewide Contingency Fund was not approved.

Early Intervention - A $5 million increase for preschool is projected to cover approximately 1,500 additional children ages 3 to 5. For children aged ages 0 to 3, a $1.8 million increase is included.

Adult Protective Services – Final numbers are not yet available, but it appears that about $2.4 million was approved, which is comparable to the rate of a partial year of funding in FY 12-13.

Budget - from Page 1


Governor Signing CeremonyGovernor Tom Corbett held a ceremonial bill signing for HB 2, now Act 3 of 2013, on June 14th at William Tennent High School in Warminster. This Act creates a legislative commission to establish a funding formula for special education that for the first time in Pennsylvania’s history, takes into account accurate student data and the actual needs of students.

Representative Bernie O’Neill and Senator Pat Browne championed the bill in the legislature and advocates from 40 organizations throughout Pennsylvania spent countless hours talking to and meeting with legislators, media members, school officials, and others on the importance of this legislation. The Arc of PA was centrally involved in advocacy on this issue from the beginning.

Commission members will assign weights to three cost categories for special education services and include additional accountability measures for school districts. Any new state funding added to the special education line item will be distributed through the formula recommended by the commission.

The commission established by the legislation has begun work and will release its recommendations for a new, weighted special education funding formula in November.

ABOVE: Governor Corbett sits with Chloe Kondrich, Senator Pat Browne, and Representative Bernie O’Neill. The Arc was well represented among the advocates attending at the signing ceremony, including Maureen Cronin and Pam Klipa, the King and Lightner families, and numerous local chapter advocates.

Photo courtesy Governor’s Press Office


Thank You!The Arc of Pennsylvania offers a grateful

“Thank You” to everyone who made a financial contributionbetween July 1, 2010 and June 30, 2011. “Thank You” as well to every local chapter of The Arc across the state who continue to

make supporting state advocacy a budget priority.Adams, Kenneth

AMERIGROUP Charitable FoundationBartelmay, Jr., M.J.

Bernstein, Jerome (Estate)Bordick, MarkBurke, WilliamCarey, DianeConway, Paul

Cronin, MaureenCrowell & Moring, LLP (In Memory of

Claire Ross)Dickinson, ToddDowney, Jeanne Elkin, Eleanor

Feinstein, Celia Freet, Wayne

Gorton, ChristopherGoryl, John

Grady, KarenGurreri, Rose Ann (In Memory of

Daniel May)Holder, Cheryl (In Memory of

Daniel May)Holland, SarahHoupt, Kevin

Iseman, JeffreyKlipa, Pam

Kondrich, Kurt A.L.B. Smith Estate Foundation, Inc.

Lee, Cecilia

Lewis, ChristyMarsh, Michael

McDonald, Anna (In Memory of Maryann Bottiglier)

Merck Partnership for GivingMurray, Nancy

Networks for Training &Development, Inc.Neuville, ThomasOakes, Kenneth

Peters, Todd (In Memory ofThomas Perry)

Public Consulting GroupRichey, Nancy

Ridgers, Justin J.Ruhlman, Emanuel

Schellenberger, Ellen J. Searle, Jean Stengle, PaulStone, Duane

Stranix, JoshuaSuroviec, Stephen

Thompson, Elizabeth A.United Way of Southeastern

PennsylvaniaVannieuwkuyk, William

Wagner, EdwardWolfe, Sara

Zielenbach, Coleen


“TECH TALK”Changes Coming to

Telecommunication Distribution Device Program

Sandra McNallyAssistant Director, Community ServicesProgram Director, PA’s Initiative on Assistive TechnologyInstitute on Disabilities at Temple University

Pennsylvania’s Telecommunication Distribution Device Program is pleased to announce some exciting equipment changes taking effect on July 1, 2013. Although we are sad to see some of our old favorites go, the industry is changing; and we’re changing with it!

Some of the most exciting changes come from the industry itself. For the first time, the telephone manufacturing industry has agreed on a standard for measuring the level of amplification on telephones, and a label so consumers can clearly understand what they’re buying (TIA-4953 Read more about it at this link: http://clarityproducts.com/about-clarity/tia-4953). Each phone will be labeled as to which level of hearing loss (i.e. mild, moderate or severe) the phone will adequately accommodate. Although there are not many phones that have been tested that meet the standard yet, we are adding them to the program quickly to better serve your needs! You’ll start to see them in stores or your favorite website soon.

To make room for some of the new phones, we’re saying goodbye to some of our favorites, including the long-standing Clarity RC200 and XL50, the Serene PhotoPhone HD-30, the Plantronics Cordless Headset Phone CT-14, Dialogue Voice Carry Over Phone, and the Clarity Lamp Flasher and Bed Shaker. Some of these phones have been discontinued by the manufacturer and others have sister phones who have similar talents.

Our three new phones stand out in a number of ways. The most notable among them is the Clarity Fortissimo. Designed for individuals with limited mobility and hearing loss, this speakerphone can be activated by a remote microphone/pendant that is body worn. A headset can be worn with the pendant to allow for private conversations. For people with severe physical limitations, a number of switches can be added to ensure accessibility. The Fortissimo is rated for up to a severe hearing loss.

The other two Clarity phones to be added to the program are the twin Alto and Alto Plus. These are corded phones, appropriate for up to a severe hearing loss, and also amplify outgoing voice up to 15dB. The Alto’s key features include big buttons,

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 [email protected] Website: www.patf.us

PA Initiative on Assistive Technology—1-800-204-7428 (voice) or 866-268-0579 (TTY) or email [email protected]

PA Telecommunication Device Distribution Program 1-800-204-7428 or email [email protected]://disabilities.temple.edu/programs/assistive/piat


10 speed-dial buttons, talking keypad, visual volume control, and a built-in speakerphone. The Alto Plus has the large print LCD display for caller ID, 3 speed-dial buttons, a built-in speakerphone and a talking keypad. All the new Clarity phones come with ClarityLogic, which is a direct line to the Clarity customer support to help consumers program and learn about their new phones.

For more information about PA’s Telecommunication Device Distribution Program, please call 800-204-7428 or email [email protected].

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 Place301 Chestnut Street

Harrisburg, PA 17101 [email protected]


New Board Approved Budget, Strategic Plan

The Board of Directors met June 22 at The Arc of Pennsylvania’s offices in Harrisburg.

Jeanne Downey began her second two-year term as Board President with a new slate of officers to serve with her, including Ken Oakes (1st Vice President), Bill Burke (2nd Vice President), and Mike Marsh (Treasurer) and Jean Searle (Secretary). Jessica Capitani, Cindy Dias, Cecilia Lee and Phil Rosenbauer joined as new Board members, while Wayne Freet, Kurt Kondrich, Christy Lewis, Josh Stranix and Sara Wolff returned for new terms on the Board.

The Board approved the organization’s FY 2013-14 budget and new committee rosters. It also agreed to the proposed merger of The Arc of Crawford County with The Arc of Warren and Forest Counties. The Strategic Plan, presented to the state membership at the April annual meeting, was given final approval.

Lewis ReceivesPCE Award

Christy Lewis, Executive Director of The Arc of Washington County and current President of the Penn-sylvania Conference of Executives of The Arc (PCE), was awarded this year’s PCE Erman A. Gentile Award for outstanding service as executive director of a local chapter of The Arc in PA.

Lewis (right) was presented the award by Cynthia Dias (left), Executive Director of The Arc of Greene County.


The Arc of PA Board of DirectorsJeanne Downey – Erie PresidentKen Oakes – Philadelphia 1st Vice PresidentWilliam Burke – Lackawanna 2nd Vice PresidentJean Searle – Philadelphia SecretaryMichael Marsh – Montgomery TreasurerPaul Conway – Montgomery Past PresidentChristy Lewis - Washington PCE RepresentativeFrank Bartoli - Delaware At LargeJessica Capitani - Dauphin At Large Cynthia Dias - Greene At LargeWayne Freet – Adams At LargeKaren Grady – Lehigh At LargeSarah Holland – Lancaster At LargeKurt Kondrich – Allegheny At LargeCecilia Lee - Montgomery At LargeNancy Murray – Allegheny At LargePhilip Rosenbauer - Butler At LargeDuane Stone – York At LargeJoshua Stranix – Schuylkill At LargeSara Wolff – Lackawanna At LargeM.J. Bartelmay – Mercer Ex-Officio The Arc of U.S. BoardGary Horner – Allegheny Ex-Officio The Arc of U.S. Board

StaffExecutive Director Maureen CroninGovernment Relations Director Pam KlipaDirector, Include Me From the Start Rita CheskiewiczPolicy & Development Director Ashlinn Masland-SaraniOperations Director Gwen Adams Administrative Support Amy HouserFinancial Support Sara HughesSelf Advocacy Engagement Consultant Matthew StinnerDevelopment & Public Relations Consultant Todd A. Dickinson

Suite 403 — Pennsylvania Place301 Chestnut Street

Harrisburg, PA 17101717-234-2621

www.thearcpa.org

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which The Arc of Pennsylvania manages for the PA Developmental Disabilities Council.

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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.

The Arc of Pennsylvania301 Chestnut Ave.Suite 403 Harrisburg, PA 17101

Governor Corbett held a bill signing ceremony for HB2 (now Act 3), creating a task force to develop recommendations for improving statewide funding of special education. (See page 6 for further information.)

Numerous members of The Arc family worked tirelessly for the past few years to pass this important legislation, including the Lightner family, represented here with the Governor by Kevin and Brian.

Photo courtesyGovernor’s Press Office

PA Message Summer 2013

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Transcript of PA Message Summer 2013