pennsylvania message 2012, issue 3

PennsylvaniaMessage

Summer 2012 - Volume LI, No. 3Quarterly Publication

Budget Advocacy Pays OffAfter months of advocacy from thousands of members of The Arc across Pennsylvania and supporters from throughout the disability community, the state General Assembly passed a state budget for fiscal year 2012-13 that restores most of the Governor’s proposed cuts, and even includes new money for important initiatives such as the waiting list. Thank you to everyone who took the time to make your voices heard.

The Intellectual Disabilities Community Waiver line receives $17.8 million more state funds than the governor proposed. Included are funds to serve 430 people on the emergency waiting list with aging caregivers and 700 graduates leaving special education school programs.

The proposed block grant system for county-run human services programs (Intellectual Disabilities Base Services, Community Mental Health, Behavioral Health, Medical Assistance Outpatient, and the Human Services fund) is not included. However, a pilot project in line with the Governor’s proposal will be implemented in up to 20 counties. The change from a full block grant system to a pilot program is a definite improvement although there are still concerns, including the fact that there is no sunset provision or duration limit of the pilot program, and no requirement that it be assessed. We will watch the implementation of the block grant pilot to identify any negative impacts to persons served by Arc chapters. The Governor proposed a 20% cut for these programs but, due to effective advocacy, the final budget had a 10% cut for these programs. Details about how this cut will be applied among the various human services programs are still being worked out.

Self advocate Matt Stinner from Dauphin County spoke at a May rally at the state Capitol for restored funding.

BUDGET, continued Page 3

Pennsylvania Message

Never doubt that a small group of committed citizens can change the world. Indeed, it’s the only thing that ever has. - Margaret Mead

As members of The Arc of Pennsylvania, we have seen, experienced, and provided leadership for several major advocacy efforts these past three months. The roar from our disability community and other committed citizens has been heard across the Commonwealth. In April, our Annual SAGA Day provided attendees with excellent presentations ranging from the Department of Justice Olmstead Enforcement to Sustainability of IDD Service funding. The Legislative Reception was well attended and Arc members were able to speak directly to their Legislators. The Rallies at the Capitol, on May 2 and May 8, drew thousands

of individuals whose roar focused on funding for persons with intellectual and developmental services. TV stations covered these events and The Arc was a prominent leader. Maureen Cronin spoke on local radio programs to further explain the crisis we are facing. The staff at The Arc of PA has done an exceptional job keeping all our members informed of the issues and the events. And at the end of June, we learned that our voices were heard when Gov. Corbett signed the budget! We may not have gotten everything we wanted, but as Maureen Cronin stated, “we have to celebrate the amazing efforts of our members that helped restore 10 percent of the cuts to the block grant, limited the block grant implementation and significantly increased funding for intellectual disability services.”

The influence of the Arc of PA was also evident in the increase in grant monies awarded to us by the Developmental Disability Council. The Arc was given $25,000 increase to the existing $75,000 PIE Grant. Now that is quite a big piece of the “pie”!

We are also advocating and raising awareness for inclusion, through the roll out of the book Our Friend Mikalya. The Arc of Pennsylvania and Mikayla’s Voice have sent copies of the book to every elementary school in the Commonwealth. A recent kickoff event was attended by the Deputy Secretary for Elementary Education at PDE, Walmart folks, and the Bureau of Special Education Chief. But the most important individuals in the audience were the students, who are experiencing inclusion in their own schools. This type of exposure is influencing the next generation of advocates!

In late April, Betsy Messina called me out of the blue. She wanted to talk about ideas for next steps in our advocacy efforts. As happy as she was with our usual efforts, she felt new and innovative ideas were needed. We talked about social media, Twitter, etc. Betsy had me so excited about the opportunities! She said she was leaving on her dream vacation to the Bahamas and that she would call me when she returned to talk more about creative advocacy approaches. Two weeks later, I got the phone call that Betsy had passed away while vacationing. What a tremendous loss. But Betsy left me with some very specific instructions and I promise you, Betsy, The Arc will make your advocacy ideas a reality!

Advocacy happens everywhere … be there!

Jeanne Downey is from Erie County, Pennsylvania.She began her 2-year term as President of The Arc of Pennsylvania in June 2011.

President’s Message - Jeanne Downey


The final budget maintained the Governor’s proposed $1.7 million in start-up funds for the Adult Protective Services program which advocates for The Arc pushed so hard to get passed last year. The funding for APS will allow this essential program to develop.

The budget also provides $25 million to fully implement the year two plan to de-institutionalize 100 residents in state centers with intellectual disabilities, as called for in the federal Benjamin Settlement.

For the fourth straight year, the special education budget is level funded. However, a $15,000 voucher to students with disabilities was included in the Educational Opportunity Scholarship Tax Credit program, which makes $50 million in tax credits to businesses who contribute to scholarship organizations for the purposes of providing school vouchers to students in low-achieving public schools.

Early Intervention Infant/Toddler received a 7.9% increase in state funds, but with a loss of federal ARRA funds, the actual total increase is 2.5%. Early Intervention Preschool has a proposed 4.1% increase in state funds which is partially offset by a loss in federal ARRA funds.

As the Governor proposed, cash grants are eliminated for 60,000 current recipients effective August 1. Recipients include people

with disabilities and chronic illnesses. Some of them will also lose Medical Assistance, but both the GA-related Categorically Needy Medical Assistance Program and the GA-related Medically Needy Only Medical Assistance Program will continue.

The Arc participated in two rallies in May at the state Capitol designed to raise awareness

of the real-life impact of proposed budget cuts. Representative Gene DiGirolamo (right) encouraged advocates to make their voices

heard during the budget process.

BUDGET, continued from Page 1


SystemsAdvocacy &GovernmentAffairs

… In Brief

Community Based ServicesTax Credit

The General Assembly passed a tax code bill (HB 761) including language introduced by Representative Scott Boyd (R-Lancaster) that allows a tax credit for businesses that contribute to nonprofit organizations which provide community based mental health or intellectual disability services. Guidelines are still to be developed for the program which will be administrated by the Department of Community and Economic Development. Qualifying businesses will receive a 50 percent tax credit for a one year contribution, and a 75 percent for contribution in two or more years. A cap of $3 million in tax credits is in place for each fiscal year, not to exceed $100,000 annually per business firm.

Special EducationFunding Reform

Despite overwhelming bi-partisan support from both chambers of the General Assembly, SB 1115 was not adopted with the annual budget. SB 1115 was amended by the Administration, and the House and Senate did not act on the proposed changes. The General Assembly will consider the special education reforms later in 2012, after the summer recess. Although this is a major disappointment, parent advocates and disability groups

are encouraged to stay engaged to overcome the obstacles to improving special education policy and practices.

Dental BillHB 532 introduced by Representative Stanley Saylor (R-York), now Act 94, provides mandatory insurance coverage for general anesthesia for “a

patient who is seven years of age or younger or develop-m e n t a l l y d i s a b l e d for whom a s u c c e s s f u l result cannot be expected for treatment

under local a n e s t h e s i a and for whom a superior result can be expected for treatment under general anesthesia.” The Arc of PA has supported this bill since it was first introduced.

Affordable Care ActThe Affordable Care Act, now upheld by the United States Supreme Court contains provisions important to the disability community, including:* Eliminate annual and lifetime limits on expenses in insurance policies.* Eliminate policy exclusions for pre-existing conditions.* Prevent the practice of rescissions (insurers cancelling coverage when a patient becomes seriously ill).

The Supreme Court also ruled that states can opt out of the health care law’s Medicaid expansion without losing federal funding for its entire Medicaid

program, so Governor Corbett now needs to decide what Pennsylvania will do.

For a detailed description of the ruling go to www.supremecourt.gov/opinions/11pdf/11-393c3a2.pdf

Office of Developmental Programs

(from A Slice of PIE, Volume 13 Issue 2, 2012)

Using the Act 22 expedited regulatory process, regulations for developmental programs home and community-based services and Intermediate Care Facilities/Intellectual Disabilities (ICF/ID) services were published on June 9, 2012. The regulations include several significant changes to the way residential services will be provided and reimbursed. In addition, rate notices were issued: for ODP cost-based and fee schedule services for 2012-13 on May 29; for Vendor Fiscal/Employer Agent on June 7; and for Agency with Choice on June 8 . All of these documents are available at www.odpconsulting.net under Communications/Informational Memos.

FMS RFA UpdateDPW has submitted a Request for Application for Financial Management Services. The Request for Application, or RFA, will ensure that financial management services are consistent and streamlined across all waivers and the Act 150 program.” To date, The Arc of PA has not heard anything about the results of the RFA. We have requested updates at the MAAC (Medical Assistance Advisory Committee) meetings.

Rep. Saylor


Ken & Gwen AdamsAnonymousMerton J. Bartelmay, Sr.Frank BartoliMarsha BlancoMark BordickDiane C. BrokenshireWilliam V. BurkeDiane CareyRita CheskiewiczPaul ConwayMaureen CroninAnna CirilloTodd A. DickinsonJeanne DowneySheila N. FabrizioRosemary & John FarmerWayne FreetFriends of Jim GormleyChristopher GortonKaren GradySarah HollandGary HornerThomas & Beth Ann HuntingtonDr. & Mrs. John JudsonHelen KangasLois KeiserPam KlipaL.B. Smith Foundation

Shari Ross LahlouPatrick & Barbara LantzMichael MarshMerck Partnership for GivingBetsy MessinaNancy MurrayBeatrice MusserKen OakesRobert E. RainsGertrude ReedNancy RicheyFriends of Claire RossTerry E. RothSAP Matching ProgramBrooke SchoffstallBarbara SchultzStephen & Barbara SchultzJean SearleBarry J. ShapiroRichard ShochDuane StoneStephen SuroviecUnited Way of Southeastern PennsylvaniaWalmartNorma WatsonJohn & Barbara WeaverMaureen V. WestcottSara WolffPamela Zotynia

THANK YOUThe Arc of Pennsylvania is deeply grateful for the support it

receives from every local chapter of The Arc across the state, as well as from the following individuals and organizations that

contributed during our 2011-12 fiscal year.


The Arc of Pennsylvania’s Include Me From The Start ProgramContinues to Change Lives

Include Me From The Start was established in 2010 as an initiative of The Arc of Pennsylvania with support from the Pennsylvania Department of Education. Include Me began as a 2½ year inclusion initiative for students with significant disabilities in kindergarten and first grade. The effectiveness of the project has led to continued support from the Pennsylvania Department of Education for operation in the 2012/13 school year.

Carter is IncludedCarter is 8 years old. He has Down syndrome and PDD-NOS. In the 2010-2011 school year, Carter went to a regular kindergarten classroom for special activities but was mainly educated in a diagnostic kindergarten classroom where all his classmates also had disabilities. Carter didn’t like to go to school, and his activities and curriculum in the diagnostic kindergarten were different than the curriculum in the regular education kindergarten classrooms. Carter recognized

only ½ of the letters in the alphabet, could not write his name, inconsistently counted to 10 and recognized only a few numbers, had trouble expressing his needs, and spoke in 1-2 word sentences. Carter’s family knew he wasn’t being challenged to reach his full potential, and they decided that they wanted him to attend a regular kindergarten classroom.

In the 2011-2012 school year, Carter was fully included in a regular education kindergarten classroom. He had great support from his teacher, family, aide, principal, and Include Me consultant Stacy Greusel. Carter made more progress in the first five weeks of his time in the regular kindergarten classroom than he had the whole previous year in the diagnostic classroom. He recognizes numbers to 100 and can do simple addition and subtraction; speaks, writes, and types in complete sentences; reads books; can communicate his needs 95% of the time; and eats lunch and walks stairs with little to no help, tasks that were extremely difficult for him in the past.

Pictures courtesy of Cathy GustCarter, in the middle of both the picture above and the one below, has made great improvements and great friends in a

regular education classroom.


Carter’s kindergarten classmates have become good friends with him, and now Carter has friends of all different abilities. Here is what some of them are saying about him: “Carter is nice. He is great at reading books. He is good at playing outside with a soccer ball. He is a nice writer. He is my favorite friend. He came to my birthday. He likes the computer. I am glad he is my friend.” Parents of these friends have expressed how much Carter means to their children, and how he has taught them compassion, acceptance, tolerance for diversity—lessons beyond what they expected their children to learn in kindergarten.

Include Me SuccessSince its inception, Include Me has been externally evaluated by the University of Pittsburgh to determine the impact of the project. During the first year of data collection, analysis revealed positive impacts in student development and learning, an increase of inclusion practices in classrooms, and improvement of parent and teacher perceptions of inclusion practices. Data for the 2011-2012 school year will be available later this summer.

Include Me makes a difference in the lives of students, parents, teachers, and school administrators. Consultants working with Include Me provide onsite inclusion support in schools as well as trainings that empower parents to make informed choices about the education of their children. In the 2010-11 school year, Include Me served 111 students in 97 classrooms in 30 districts. The project served 130 students in 163 classrooms in 36 school districts in the 2011-2012 school year.

Include Me Moves ForwardInclude Me is eagerly anticipating the 2012-2013 school year, and we look forward to having similar stories of changed lives to share. Include Me is partnering with the Office of Child Development and Early Learning in a new initiative to offer inclusion support and training to preschools across the Commonwealth. Include Me consultants will also continue working with school-aged students, expanding inclusion support in grades K-12. Include Me has additionally partnered with school districts involved with the project to develop Inclusive Model Schools, which will serve as a resource to teachers and administrators as they implement inclusive practices.

Learn more about Include Me From The Start atwww.includemepa.org

Like so many children with disabilities, Carter is thriving in a regular education classroom.His reading ability has markedly improved.


“TECH TALK”National Deaf-Blind Equipment Distribution Program Comes to

Pennsylvaniaby Amy S. GoldmanInstitute on DisabilitiesTemple University

A new program that provides adapted equipment for telephone and internet access to people who are considered “deaf-blind” is coming to Pennsylvania! The National Deaf-Blind Equipment Distribution Program, a result of provisions in the federal “21st Century Telecommunications Act”, will be administered by Pennsylvania’s Initiative on Assistive Technology, a program of the Institute on Disabilities at Temple University. People must meet the definition of being “deaf-blind”, although they may have intellectual and developmental disabilities as well. People may become deaf-blind as they get older, losing their hearing and their vision, they may have been born with deaf or blind and lose the other sense, or they may have been born with those (and other) disabilities. Eligibility is restricted to “low income” applicants, whose household income is less than 400% of poverty.

People who are deaf-blind usually need technology to communicate with others on the phone or through the internet. There are many different kinds of assistive technology (AT) that can help! This includes very specialized devices like the Deaf-Blind Communicator, as well as generic devices such as – you guessed it – the iPad.

A unique feature of the NDBEDP is the provision of free assessments to identify the appropriate technologies, as well as the availability of training, at no cost, to assure the individual’s ability to master the use of the identified AT.

The Deaf-Blind Communicator consists of two separate components for people who are deaf-blind, a DB-BrailleNote notetaker and a DB cell phone. These two components communicate wirelessly with each other using Bluetooth.

A statewide network of organizations and individuals who can provide evaluation of AT needs of people who are deaf-blind for telecommunication and internet access, as well as professionals and peers who can train the use of the equipment, will be developed to facilitate consumer choice and easy access to providers.

For more information about NDBEDP, please contact Pennsylvania’s Initiative on Assistive Technology at 800-204-PIAT (800-204-7428) or [email protected]. For information about free assistive technology for telephone access for people with other disabilities, contact Pennsylvania’s Telecommunication Device Distribution Program (TDDP) at the same number, or [email protected].

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

DB-BrailleNote notetaker


Board MeetingThe Board of Directors of The Arc of Pennsylvnia met in June in Harrisburg.

Much of the discussion focused on the legacy of Board member and disability advocate Betsy Messina, who died unexpectedly in May. Besty will be missed by all who knew her.

Parent advocate Sarah Holland and Executive Director of The Arc of Delaware County Frank Bartoli joined the Board, while Wayne Freet and Karen Grady were sworn in for new terms.

National ConventionRegistration 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.

Register now at www.thearc.org and take advantage of early registration and hotel discounts. Check out the full Convention Schedule and find out more about the beautiful host city at www.thearc.org.

October 25-28, 2012Washington, D.C.

Register now at www.thearc.org

Achieving Inclusion Across the Globe

The National Convention and International Forum


Mikayla UpdateTo celebrate children of all abilities and their inclusion in schools and communities, The Arc of Pennsylvania, in partnership with Mikayla’s Voice, recently mailed copies of the book Our Friend Mikayla to every one of the 1,800-plus public elementary schools in the Commonwealth.

Mikayla Resh was born with a brain injury resulting in multiple disabilities. Mikayla has never spoken a word, yet her friends have found a way for her voice to be heard across the commonwealth.

Our Friend Mikayla details her school days through the eyes of her third-grade peers and is a valuable resource that teaches the meaning of diversity and unconditional friendship in a language that speaks to students of all ages. The book’s printing was funded through a $10,000 grant from the Walmart Foundation, with mailing costs funded by Air Products.

The book is a valuable resource that teaches the meaning of diversity and unconditional friendship in a language that speaks to

students of all ages. It demonstrates the positive impact Mikayla has had on everyone she has touched.

In April, Mikayla participated in a public reading of Our Friend Mikayla at an elementary school in Lebanon County, where she was joined by her mother Kim, school administrators and local elected officials.

In June, The Arc of the United States featured Mikayla and the distribution of her book in their e-newsletter and on their website.

Further information about Our Friend Mikayla is available at www.mikaylasvoice.org.

Mikayla and her mom Kim, joined at the statewide launch of Our Friend Mikayla with Walmart representative Jason

Klipa, State Representative Mauree Gingrich, andDr. Carolyn Dumaresq, Deputy Secretary for Elementary

and Secondary Education


The Arc of PA Board of DirectorsJeanne Downey – Erie PresidentChristopher Gorton – Dauphin 1st Vice PresidentNancy Richey – York 2nd Vice PresidentSara Wolff – Lackawanna SecretaryKen Oakes – Philadelphia TreasurerPaul Conway – Montgomery Past PresidentChristy Lewis - Washington PCE RepresentativeFrank Bartoli - Delaware At LargeWilliam Burke – Lackawanna At LargeWayne Freet – Adams At LargeKaren Grady – Lehigh At LargeSarah Holland – Lancaster At LargeBetsy Messina – Chester At LargeMichael Marsh – Montgomery At LargeNancy Murray – Allegheny At LargeRichard Shoch – Northumberland At LargeJean Searle – Philadelphia At LargeDuane Stone – York At LargeJoshua Stranix – Schuylkill At LargePamela Zotynia – Luzerne 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 CroninOffice Manager Gwen AdamsTraining & Special Education Coordinator Pam KlipaPublic Policy Advocate Maureen WestcottDirector, Include Me From the Start Rita CheskiewiczAdministrative Assistant Amy HouserAdministrative Assistant, Include Me From The Start Ashlinn Masland-SaraniDevelopment & Public Relations Consultant Todd A. Dickinson

101 South 2nd StreetSuite 8, Executive House

Harrisburg, PA 17101717-234-2621

www.thearcpa.org

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 [email protected] 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.

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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:

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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 PennsylvaniaSuite 8 - Executive House101 South Second StreetHarrisburg, Pennsylvania 17101

Chester’s Diane Carey is Executive of the Year

Diane Carey, long-time Executive Director of The Arc of Chester County, was honored as “Executive of the Year” by the Pennsylvania Conference of Executives of the Arc (PCE) at their June meeting.

Although Carey was the outgoing president of PCE, the other members managed to keep the award a surprise to her.

Carey is retiring this year after 15 years as Executive Director of The Arc of Chester County.

Diane Carey (l) is presented her Executive of the Yearaward by The Arc of Greene County’s Cindy Diaz (r).

pennsylvania message 2012, issue 3

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