COMMONWEALTH OF PENNSYLVANIA HOUSE OF REPRESENTATIVES APPROPRIATIONS COMMITTEE HEARING STATE CAPITOL MAIN BUILDING ROOM 140 HARRISBURG, PENNSYLVANIA THURSDAY, MARCH 7, 2013 1:00 P.M. PRESENTATION FROM HOUSE MEMBERS BEFORE: HONORABLE WILLIAM F. ADOLPH, JR., MAJORITY CHAIRMAN HONORABLE KAREN BOBACK HONORABLE JIM CHRISTIANA HONORABLE GARY DAY HONORABLE GORDON DENLINGER HONORABLE BRIAN ELLIS HONORABLE MAUREE GINGRICH HONORABLE GLEN GRELL HONORABLE SETH GROVE HONORABLE TOM KILLION HONORABLE DAVID R. MILLARD HONORABLE MARK T. MUSTIO HONORABLE DONNA OBERLANDER HONORABLE BERNIE T. O'NEILL HONORABLE MICHAEL PEIFER HONORABLE SCOTT A. PETRI HONORABLE CURTIS G. SONNEY ————————— JEAN DAVIS REPORTING 285 EAST MANSION ROAD • HERSHEY, PA 17033 Phone (717)503-6568 1 BEFORE (cont.'d): 2 HONORABLE JOSEPH F. MARKOSEK, MINORITY CHAIRMAN HONORABLE MATTHEW D. BRADFORD 3 HONORABLE MICHELLE F. BROWNLEE HONORABLE MIKE CARROLL 4 HONORABLE H. SCOTT CONKLIN HONORABLE MADELINE DEAN 5 HONORABLE DEBERAH KULA HONORABLE MICHAEL H. O'BRIEN 6 HONORABLE JOHN P. SABATINA HONORABLE STEVEN SANTARSIERO 7 HONORABLE JAKE WHEATLEY 8 ALSO IN ATTENDANCE: 9 DAVID DONLEY, REPUBLICAN EXECUTIVE DIRECTOR 10 DAN CLARK, REPUBLICAN CHIEF COUNSEL MIRIAM FOX, DEMOCRATIC EXECUTIVE DIRECTOR 11 HONORABLE PAMELA DeLISSIO HONORABLE DAN FRANKEL 12 HONORABLE KEITH GILLESPIE HONORABLE JOE HACKETT 13 HONORABLE NICK KOTIK HONORABLE PHILLIS MUNDY 14 HONORABLE MARIO SCAVELLO 15 16 JEAN M. DAVIS, REPORTER NOTARY PUBLIC 17 18 19 20 21 22 23 24 25 2 1 I N D E X 2 TESTIFIER 3 NAME PAGE 4 5 THOMAS MURT 4 6 PAUL COSTA 11 7 TARAH TOOHIL 16 8 BRYAN CUTLER 19 9 MARIA DONATUCCI 23 10 RICK MIRABITO 28 11 JERRY KNOWLES 34 12 MARK COHEN 38 13 PAM DiLISSIO 40 14 MADELEINE DEAN 46 15 MARK GILLEN 50 16 JAMES ROEBUCK (SUBMITTED WRITTEN REMARKS) 55 17 18 19 20 21 22 23 24 25 3 1 P R O C E E D I N G S 2 * * * 3 MAJORITY CHAIRMAN ADOLPH: Good afternoon, 4 everyone. 5 I'd like to call to order the House 6 Appropriations Budget Hearing. This part of the hearing is 7 for members of the House of Representatives to come before 8 the Appropriations Committee with written as well as verbal 9 requests regarding certain line items for revenue in the 10 budget. 11 And our first member is Rep. Tom Murt from 12 Montgomery County as well as Philadelphia County. 13 REP. MURT: That's correct, Mr. Chairman. 14 MAJORITY CHAIRMAN ADOLPH: Good afternoon, 15 Representative. 16 REP. MURT: Good afternoon, Chairman Adolph. 17 Good afternoon, Chairman Markosek. 18 MAJORITY CHAIRMAN ADOLPH: I will tell each 19 member -- and while I'm talking, it's not going against 20 your time, so you don't have to worry about that. We try 21 to keep the requests to about five minutes. 22 REP. MURT: Okay. 23 MAJORITY CHAIRMAN ADOLPH: Thank you very much. 24 REP. MURT: Thank you. I will comply with that, 25 Mr. Chairman. 4 1 MAJORITY CHAIRMAN ADOLPH: You may begin. 2 REP. MURT: Thank you, Mr. Chairman for the 3 opportunity to testify today. I'm here this afternoon to 4 request that funding be restored and increased in the 5 2012-2013 Commonwealth budget for the Pennsylvania Tourette 6 Syndrome Alliance. 7 I am here to request the very nominal amount of 8 $150,000 be put back into the budget to fund the critically 9 important programs and services provided by the 10 Pennsylvania Tourette Syndrome Alliance. The Pennsylvania 11 Tourette Syndrome Alliance is a non-profit agency based in 12 Adams County. It serves as Pennsylvania's own chapter of 13 the National Tourette Syndrome Association. 14 This organization provides very critical services 15 to Pennsylvanians who suffer from Tourette Syndrome and 16 their families. Tragically, the Governor's budget proposes 17 to zero out this line item altogether. I'd like to note 18 that our neighboring state of New Jersey funds this same 19 Tourette Syndrome mission to the tune of $1 million, while 20 our own Commonwealth is proposing a total elimination of 21 this funding that assists families who are struggling to 22 cope with this disorder. 23 Mr. Chairman, in all honesty, the original 24 $100,000 appropriation was not adequate, and the Governor's 25 plan to totally eliminate funding for the Pennsylvania 5 1 Tourette Syndrome Alliance will have a devastating effect 2 on their mission. Without restoration of this funding, 3 simply stated, the Pennsylvania Tourette Syndrome Alliance 4 will not be able to properly advocate for Pennsylvanians 5 who suffer from Tourette Syndrome. 6 The mission of the Tourette Syndrome Alliance is 7 to identify and to support the needs of and to advocate for 8 individuals with Tourette Syndrome in the Commonwealth and 9 to promote awareness of Tourette Syndrome through 10 informational outreach and educational presentations. 11 The Pennsylvania Tourette Syndrome Alliance 12 provides services for those with Tourette Syndrome, their 13 families, schools, the medical community, and the general 14 public. The Pennsylvania Tourette Syndrome Alliance 15 represents 9,000 families and their children who are 16 enrolled in Pennsylvania schools. 17 Mr. Chairman, I think it's important that I 18 describe what exactly Tourette Syndrome is. Tourette 19 Syndrome is a neurological disorder characterized by 20 uncontrolled tics, involuntary, rapid, sudden moments or 21 vocalizations occurring repeatedly and frequently, such as 22 excessive eye blinking, coughing, throat clearing, 23 sniffing, and facial movements. In its more severe form, 24 victims may bark, use profanity, or make other awkward 25 social comments or sounds. 6 1 Tourette Syndrome affects between 3 and 10 in 2 every 1,000 children based on the new prevalence study by 3 the National Institute of Health. Thousands of public 4 schoolchildren in Pennsylvania have been identified as 5 having Tourette Syndrome. Many more sadly go undiagnosed 6 or have chosen not to be identified at all for fear of 7 being stigmatized. 8 Mr. Chairman, Tourette Syndrome is a very complex 9 disorder and often co-occurs with other disorders, such as 10 Attention Deficit Disorder, Attention Deficit Hyperactivity 11 Disorder. Obsessive-Compulsive Disorder, Sensory 12 Processing Disorder, and a variety of other learning 13 disabilities. 14 Tourette Syndrome, with its spectrum of 15 associated disorders, is multifaceted and is often 16 misunderstood. Together, these diagnoses make coping in 17 school a tremendous challenge. Until their teachers and 18 classmates understand or are trained, many children with 19 Tourette Syndrome are reprimanded in school or tormented by 20 peers for their symptoms which are caused by their 21 disability. 22 The funding in question empowers the Alliance to 23 provide supports and services to Pennsylvania residents 24 diagnosed with Tourette Syndrome and their family members. 25 Services provided include information and referral; 7 1 outreach programs; a dynamic website; a toll-free hotline 2 for parents, teachers, and caregivers; newsletters; support 3 groups across the Commonwealth; non-legal advocacy; and an 4 annual family conference. 5 The Pennsylvania Tourette Syndrome Alliance also 6 provides information and training to schools, teachers, 7 counselors, coaches, nurses, physicians, professionals, 8 speech pathologists, family members, and peers. To help 9 the community at large, the Alliance provides training and 10 sends outreach to the underserved areas of the State, 11 including our most rural and remote communities. 12 The Alliance also maintains a physician referral 13 list of doctors who specialize in Tourette Syndrome so that 14 families who are seeking an appropriate diagnosis and 15 treatment can locate doctors familiar with the disorder. 16 Mr. Chairman, the Pennsylvania Tourette Syndrome 17 Alliance utilizes the funds they receive from the 18 Commonwealth prudently. Their mission includes a small 19 staff who manage a cadre of numerous volunteers who provide 20 toll-free phone support to families across Pennsylvania. 21 The advocates of the Alliance drive thousands of 22 miles every year throughout Pennsylvania to attend school 23 meetings and to give educational presentations. The 24 advocates travel almost weekly to Philadelphia to help 25 Pennsylvania's poorest families get the help they need to 8 1 care for their child and to ensure the best possible 2 educational setting. 3 Many parents need assistance in navigating the 4 confusing IEP process. And as part of the IEP team, 5 Alliance advocates are able to help school districts to 6 better understand students with Tourette Syndrome and to 7 make recommendations for the modifications that will help 8 these students to be successful in school. 9 Sadly, many students with Tourette Syndrome have 10 been suspended from public schools, placed in alternative 11 schools, or not correctly identified for Special Education 12 services when no advocates are involved on their behalf. 13 Mr. Chairman, the most compelling reason of all 14 to restore full funding to the Pennsylvania Tourette 15 Syndrome Alliance is that they advocate for families who 16 have no other place to turn. 17 The families to whom I refer cannot afford legal 18 counsel nor professional advocates to fight it out with 19 their local school districts and desperately need the 20 Pennsylvania Tourette Syndrome Alliance to advocate for 21 them. The Alliance is out there fighting for these 22 families and is most deserving of our support. 23 Mr. Chairman, a fair question about the funding 24 is, what will happen if the State does not fund the 25 Pennsylvania Tourette Syndrome Alliance next year? I can 9 1 tell you with all candor that the loss of this funding will 2 have a significant negative impact on the services that the 3 Alliance will be able to provide.