COMMONWEALTH OF PENNSYLVANIA HOUSE OF REPRESENTATIVES HUMAN SERVICES COMMITTEE PUBLIC HEARING STATE CAPITOL HARRISBURG, PA EAST WING ROOM 60 MONDAY, NOVEMBER 18, 2 013 11:00 A.M. PRESENTATION ON INTELLECTUAL DISABILITIES WAITING LIST BEFORE: HONORABLE GENE DIGIROLAMO, MAJORITY CHAIRMAN HONORABLE MATT BAKER HONORABLE JOSEPH HACKETT HONORABLE DOYLE HEFFLEY HONORABLE TOM MURT HONORABLE BERNIE O ’NEILL HONORABLE BRAD ROAE HONORABLE MICHELLE BROWNLEE HONORABLE PAMELA DELISSIO HONORABLE MADELEINE DEAN HONORABLE PATTY KIM HONORABLE ERIN MOLCHANY HONORABLE MARK PAINTER Pennsylvania House of Representatives Commonwealth of Pennsylvania 2 ALSO IN ATTENDANCE: REPRESENTATIVE WILLIAM C. KORTZ, II 3 I N D E X TESTIFIERS ~k k k NAME PAGE VIKI TURNER FAMILY MEMBER....................................... 6 PAMELA NOVAK FAMILY MEMBER...................................... 10 SHEILA STASKO ASSOCIATE DIRECTOR, VISION FOR EQUALITY, PA WAITING LIST CAMPAIGN.............................. 12 LISA TESLER POLICY COORDINATOR, PA WAITING LIST CAMPAIGN...... 15 DAVID GATES, ESQUIRE PENNSYLVANIA HEALTH LAW PROJECT....................23 SUSAN RZUCIDLO EXECUTIVE DIRECTOR, SPEAK UNLIMITED............... 31 JUDY BANKS ACTING DIRECTOR, DISABILITY RIGHTS NETWORK OF PENNSYLVANIA....................................... 3 8 DAVID KAUFFMAN EXECUTIVE ASSISTANT, OFFICE OF DEVELOPMENTAL PROGRAMS............................................44 AUDREY COCCIA CO-EXECUTIVE DIRECTOR, VISION FOR EQUALITY........ 49 MAUREEN DEVANEY CO-EXECUTIVE DIRECTOR, VISION FOR EQUALITY............. 57 SUBMITTED WRITTEN TESTIMONY ~k ~k ~k (See submitted written testimony and handouts online.) 1 4 1 P R O C E E D I N G S 2 ~k k k k 3 MAJORITY CHAIRMAN DIGIROLAMO: Good to see 4 everybody, and welcome to our beautiful State Capitol. I 5 know some of you have traveled a good distance, and as we 6 always do at the Human Services Committee, I want to ask 7 everyone to stand for the Pledge of Allegiance to the flag. 8 9 (The Pledge of Allegiance was recited.) 10 11 MAJORITY CHAIRMAN DIGIROLAMO: Okay. Good 12 morning. I ’m very excited. We have a very, very important 13 hearing today on the Intellectual Disabilities Waiting 14 List. 15 And just a couple of ground rules before we get 16 started just to remind everyone that the cameras are on so 17 we are being recorded, and more than likely this will 18 appear on PCN, I am not quite sure when today, but we'll 19 probably be on PCN. And because we have a lot of people 20 who are going to testify today, to be fair to everyone, 21 what I'd like to do is allow everybody to testify first. 22 Then at the end of the hearing, if we have time, we will 23 open it up for questions from Members of the Committee. 24 That's the way I would like to do it. 25 And maybe just start off by letting the Members 5 1 who are present just say hello and identify themselves, and 2 I ’ll start with my good friend Matt. 3 REPRESENTATIVE BAKER: Matt Baker, Tioga and 4 Bradford counties. Good morning. 5 REPRESENTATIVE DELISSIO: Good morning. Pam 6 DeLissio representing parts of Montgomery and Philadelphia 7 counties. 8 MAJORITY CHAIRMAN DIGIROLAMO: Good morning. I ’m 9 Gene DiGirolamo from Bucks County, and the Chairman of the 10 Committee. 11 REPRESENTATIVE MURT: Tom Murt, Montgomery County 12 and Philadelphia County. 13 REPRESENTATIVE PAINTER: Good morning. Mark 14 Painter, Montgomery County. 15 REPRESENTATIVE MOLCHANY: Erin Molchany, 16 Allegheny County. 17 REPRESENTATIVE DEAN: Good morning, everybody, 18 Madeleine Dean, Montgomery County. 19 REPRESENTATIVE KIM: Patty Kim, Dauphin County. 20 MAJORITY CHAIRMAN DIGIROLAMO: Okay. And with 21 that, I would like to turn the hearing over to 22 Representative Tom Murt, who’s the Subcommittee chairman on 23 the issue, and also had requested that we do this hearing, 24 so Tom, I ’m going to turn it over to you. 25 REPRESENTATIVE MURT: Good morning, everyone. 6 1 Thank you for attending our hearing. 2 Before we commence, I just wanted to mention that 3 today's hearing is part of our ongoing discussion regarding 4 these issues relating to the care of our family members and 5 Pennsylvanians with various types of disabilities. We have 6 made great, great progress in the last couple years, and we 7 are going to continue on with this effort, and I just want 8 to express my gratitude to all the advocates from the 9 various agencies who have been so diligent and faithful and 10 steadfast to this mission. 11 So w e ’d like to call forth our first testifiers. 12 Mr. and Mrs. Fred Turner, family members; Pam Novak, a 13 family member; Sheila Stasko, the Associate Director of 14 Vision for Equality and the Pennsylvania Waiting List 15 Campaign; and Lisa Tesler, the Policy Coordinator for the 16 Pennsylvania Waiting List. 17 First of all, again, welcome, and thank you very 18 much for taking the time to be with us this morning. Mr. 19 and Mrs. Turner, do you want to go first? 20 MRS. TURNER: Well, it’s only Mrs. Turner. 21 REPRESENTATIVE MURT: Mrs. Turner. Okay. 22 MRS. TURNER: No Mr. Turner. Mr. Turner doesn’t 23 travel. 24 My name is actually Viki Turner, and my husband 25 and I live in West Chester, and I notice they don’t have 7 1 any representatives from Chester County on this Committee, 2 which is too bad. 3 I ’m here to talk about my daughter Caroline, who 4 has a diagnosis of Prader-Willi syndrome along with 5 intellectual disabilities. She now resides in Troy, 6 Pennsylvania, at a private intermediate-care facility 7 called Martha Lloyd Community Services. She was 26 years 8 old when we placed here there. She’s now 45. 9 She had a job when she came out of high school. 10 She had a job in a dry cleaner but subsequently lost the 11 job. We were unable to find any kind of employment for 12 her. Chester County, it is very hard to find places, and 13 also there’s no transportation there to get them there. 14 Anyway, her being at home was very difficult for 15 her and for us, so when Martha Lloyd had an opening, we 16 were very happy to have her there. Now, Martha Lloyd is 17 210 miles away from our home, so when we placed her there, 18 we had several families that we carpooled with because 19 there were several other ladies up there who had parents 20 that lived in the West Chester area, so that was very nice, 21 and we took turns driving back and forth. However, we no 22 longer have those families. Their parents have 23 subsequently either died or been put into a nursing home or 24 whatever. So it’s pretty much up to me when we want to see 25 Caroline or bring Caroline home. It is a long drive, eight 8 1 hours back and forth to get Caroline, so we do not visit 2 very often. We bring her home for holidays. She’ll be 3 coming home for Thanksgiving. We bring her home for 4 Christmas. I go up there for Family Day, et cetera, but we 5 can’t go visit her on the weekend. It’s ridiculous. 6 So I can’t fault Martha Lloyd. They’ve been good 7 for Caroline, but it’s not the best place for her. She is 8 pretty able but her diagnosis makes it that she needs 9 supervision. The ICF where she’s been living for the last 10 almost 20 years, I guess, really is not a suitable place 11 for her. She has an IQ of about 70, which doesn’t sound 12 like much but it’s fairly high. There are very few peers 13 in the ICF for her even to talk to. She’s in a bedroom 14 with two other ladies, so it’s crowded, and she doesn’t 15 have much room for her own space. We had hoped that she 16 would get waiver funding. Martha Lloyd had talked a while 17 ago about maybe getting waiver funding for her and moving 18 her into one of their other homes, but that hasn’t 19 happened. 20 So we have her up there, and as she gets older, 21 she’s becoming much more anxious to get closer to home. 22 She worries about us, particularly her father, who is not 23 particularly healthy. She’s going to be left up there, 24 that w e ’ll be gone, and nobody will come to rescue her, I 25 guess, is really what she feels like. 9 1 I think the best situation for her would be in a 2 Prader-Willi group home. There are several of those in 3 Elwyn that Elwyn runs in our area, which may be 15 or 20 4 minutes from our home. There’s also another Prader-Willi 5 group home in Willow Street in Lancaster County, which 6 actually a group of parents with children with Prader-Willi 7 syndrome lobbied for a number of years ago. That would be 8 an ideal situation too. 9 Caroline would not survive well or do well in 10 just a plain old group home. She needs specific 11 supervision because of her food-seeking, not abilities, 12 although she would be a great cat burglar, but she will 13 seek out food, and she’s been known to take other things as 14 well. So she needs a certain amount of supervision, close 15 supervision, and yet she’s very sociable and she would like 16 to be able to do things in the community.