1
1 COMMONWEALTH OF PENNSYLVANIA HOUSE OF REPRESENTATIVES 2
3 HUMAN SERVICES COMMITTEE
4 STATE CAPITOL HARRISBURG, PA 5 IRVIS OFFICE BUILDING 6 ROOM G-50
7 WEDNESDAY, MAY 8, 2013 9:00 A.M. 8 PRESENTATION ON 9 INTELLECTUAL DISABILITIES WAITING LIST FOR SERVICES
10 BEFORE: 11 HONORABLE GENE DIGIROLAMO, MAJORITY CHAIRMAN HONORABLE MATT BAKER 12 HONORABLE JOE EMRICK HONORABLE MINDY FEE 13 HONORABLE LEE JAMES HONORABLE STEVEN MENTZER 14 HONORABLE TOM MURT HONORABLE MARCY TOEPEL 15 HONORABLE ANGEL CRUZ, MINORITY CHAIRMAN HONORABLE MICHELLE BROWNLEE 16 HONORABLE PAMELA DELISSIO HONORABLE MADELEINE DEAN 17 HONORABLE PATTY KIM HONORABLE STEPHEN KINSEY 18 HONORABLE ERIN MOLCHANY HONORABLE MARK PAINTER 19
20
21
22
23
24
25
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 2
1 COMMITTEE STAFF PRESENT: MELANIE BROWN 2 MAJORITY EXECUTIVE DIRECTOR ELIZABETH YARNELL 3 MAJORITY RESEARCH ANALYST PAMELA HUSS 4 MAJORITY ADMINISTRATIVE ASSISTANT
5
6 ASHLEY McCAHAN DEMOCRATIC EXECUTIVE DIRECTOR 7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
25
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 3
1 I N D EX
2 OPENINGS REMARKS By Representative DiGirolamo, Chairman 5 3 INTRODUCTION OF COMMITTEE MEMBERS 5 - 6 4 OPENING REMARKS 5 By Representative Murt 6 - 7
6 PRESENTATION By Fred Lokuta 9 - 13 7 By Sheila Stasko 15 - 16 By Tom Carasiti 16 - 17 8 By Sheila Stasko 18 - 20 By Lisa Tesler 20 - 26 9 PRESENTATION 10 By Nancy Richey (on behalf of anonymous) 27 - 30 By Kathy Ross 30 - 34 11 By Patty Deutsch 34 - 37 By Ed McNicholas (on behalf of John Hettinger) 37 - 42 12 By Stacie DePrimo 42 - 43
13 PRESENTATION By Suzi Bergman 44 - 47 14 By Debbie Leggins 47 - 49 By Cynthia and Elizabeth Porter 49 - 52 15 By Tom Carasiti 52 - 55 By Ned Whitehead 55 - 56 16 VIDEO PRESENTATION 17 PRESENTATION 18 By Nancy Murray 58 - 61 By Audrey Coccia 61 - 66 19 By Maureen Devaney 66 - 70
20 PRESENTATION By Jim McFalls 70 - 73 21 CONCLUDING REMARKS 22 By Chairman DiGirolamo 73 - 74
23 COMMENT FROM COMMITTEE MEMBERS 74 - 77
24 STATEMENT By Fred Lokuta 78 - 79 25
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 4
1 I N D E X (cont.) 2 CONCLUDING REMARKS 3 By Chairman DiGirolamo 79
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
25
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 5
1 P R O C E E D I N G
2 ------
3 CHAIRMAN DIGIROLAMO: Good evening. And welcome to
4 this meeting of the Human Services Committee. And I think the
5 first thing we ought to do is I might ask everyone to stand for
6 the Pledge of Allegiance.
7 PLEDGE OF ALLEGIANCE RECITED
8 CHAIRMAN DIGIROLAMO: Okay. First, I'd just --- a
9 couple ground rules. I'll just let everybody know that the
10 cameras are rolling and we're being recorded. And the clock on
11 the wall is on Senate time. It's about 10 to 12 minutes fast
12 than what it really is. And I might first --- we're not going
13 to take roll, but I might start first and just let the members
14 just say hello and let you know who they are and where they're
15 from. And we will start with Representative Mentzer.
16 REPRESENTATIVE MENTZER: Steve Mentzer, 97th
17 District, which is Lancaster County, actually a northern
18 suburb.
19 REPRESENTATIVE FEE: Hi. I'm Mindy Fee, and I'm
20 from the 37th District. And it's the northern tier of
21 Lancaster County.
22 REPRESENTATIVE MOLCHANY: My name is Representative
23 Erin Molchany, and I'm from the 22nd District in Allegheny
24 County. And I'm sorry I sound like this.
25 REPRESENTATIVE KIM: Good morning. I'm Patty Kim,
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 6
1 with a normal voice this morning. I'm just kidding. I
2 represent the 103rd, which includes Harrisburg. Thank you.
3 REPRESENTATIVE PAINTER: Good morning. I'm Mark
4 Painter. I represent the good people of the 146th District in
5 western Montgomery County.
6 CHAIRMAN CRUZ: Good morning. I'm Representative.
7 Cruz, and I'm under the weather, too.
8 CHAIRMAN DIGIROLAMO: And Gene DiGirolamo from Bucks
9 County, Chairman of the Committee.
10 REPRESENTATIVE MURT: Tom Murt, 152nd District,
11 Philadelphia and Montgomery Counties.
12 REPRESENTATIVE BAKER: Matt Baker, Bradford and
13 Tioga Counties.
14 REPRESENTATIVE TOEPEL: Good morning. Marcy Toepel,
15 from 147th District, western Montgomery County.
16 CHAIRMAN DIGIROLAMO: With that, I'm going to turn
17 the microphone over to Representative Tom Murt for a few
18 opening statements. Tom is the Subcommittee Chair of Mental
19 Health and Intellectual Disabilities. Tom?
20 REPRESENTATIVE MURT: Thank you, Mr. Chairman.
21 Prior to the establishment of the Waiting List, there was no
22 uniform manner of identifying individuals in the community and
23 their levels of need. The Waiting List today provides vital
24 information for planning, not only on the individual level but
25 also at the local and state levels.
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 7
1 In 1999, the Waiting List Planning Group identified
2 411 people in emergency need of services and 3,244 in critical
3 need of services. Today, there are 4,187 people in emergency
4 need and 6,694 in critical need of services. As diagnostics,
5 assessment of need and developmental services have evolved, so
6 have changes in funding, resources and structure.
7 In light of the difficult economy, balanced with the
8 need to assure that our citizens with intellectual disabilities
9 receive appropriate services, it is important that we not only
10 understand the needs of individuals and their families but also
11 the system of service provision and the resources needed to
12 meet these needs, as well as needing to address the issues and
13 challenges surrounding the Waiting List. We are reminded that
14 there have been successes. Many of these success stories are
15 the result of advocacy and activism of our parents, service
16 providers, and families who have cared for a family member with
17 an intellectual or developmental disability with great love and
18 compassion for many years. Thank you to these dedicated
19 advocates for their service to our most vulnerable population
20 and for taking the time to educate our legislators about these
21 issues. We look forward to hearing from the testifiers today
22 who will share their perspectives on issues relating to the
23 Waiting List. Thank you, Mr. Chairman.
24 CHAIRMAN DIGIROLAMO: Thank you, Tom. And just a
25 couple people I'd like to recognize, Pam Huss from my staff,
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 8
1 who's the administrative assistant for the committee. And also
2 I would like to recognize Liz Yarnell. Just a big --- big
3 round of thanks to Liz for putting this hearing together and
4 for all the hard work you do. And also Sheila Stasko, who's
5 here and helped very much in helping put this committee
6 together. And also we would like to recognize the president
7 --- the presence of a former colleague of mine, Representative
8 Joe Brennan, who's sitting in the back there. Joe, welcome,
9 and always good to see you.
10 Okay. With that, why don't we get started? And I
11 want to introduce our first person who's going to testify, Fred
12 Lokuta, who I met for the first time yesterday in my office.
13 And we had a really good discussion. Fred's the Deputy
14 Secretary for the Office of Developmental Programs in DPW.
15 Fred, welcome. Interested in what you have to say. And we had
16 a little discussion yesterday about St. Katharine Drexel, the
17 picture I have ---
18 MR. LOKUTA: Yes, we did.
19 CHAIRMAN DIGIROLAMO: --- in my --- in my office.
20 MR. LOKUTA: Yes, we did. It was a very enjoyable
21 meeting.
22 CHAIRMAN DIGIROLAMO: Okay. Whenever you're ready
23 to start. And just --- maybe just to set the ground rules up,
24 we do have to be out of this room by 11 o'clock, even though we
25 do not have session today. But we do have to be out by 11
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 9
1 o'clock. So I thought we might just let everybody testify.
2 And we do have a half-hour set aside from 10:30 until 11:00 for
3 maybe some questions and answers. But I want to make sure that
4 everybody that's here and is going to testify has the ability
5 to do that. So Fred, whenever you're ready.
6 MR. LOKUTA: Thank you. Good morning, Chairman
7 DiGirolamo, Chairman Cruz, and members of the House Human
8 Services Committee. My name is Fred Lokuta, Deputy Secretary
9 for the Office of Developmental Programs. I want to thank you
10 for this opportunity to come before the Committee to discuss
11 ODP's efforts to serve the people of the Commonwealth with
12 intellectual disabilities and provide them with the opportunity
13 to live independent, dignified lives in their communities.
14 Truly, the options for those receiving state
15 supports have never been as broad or as deep as they are today.
16 Participants may live with their parents or in the community,
17 going to work each day for employers, large and small, or
18 learning useful life skills in one of the many day programs
19 throughout the state.
20 In addition, the number of people served by the
21 community waiver programs is the highest it has been since at
22 least 2002, now reaching approximately 27,000 people. Thanks
23 to the hard work here in the legislature and the hard work of
24 the Governor, the program received increased funding to take
25 individuals off of the waiting list this fiscal year for the
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 10
1 first time since Fiscal Year '09/'10.
2 The Initiative provided funding for an increase of
3 1,130 participants. And that's broken down 700 slots for
4 students leaving the school system in Fiscal Year '11/'12,
5 graduates, and 430 slots for persons with aging caregivers,
6 defined as having a primary caregiver greater than 60 years
7 old. We are encouraged that the Governor's proposed budget for
8 Fiscal year '13/'14 continues this commitment at providing
9 funding for an additional 1,080 participants.
10 As soon as the Fiscal Year '12/'13 budget was
11 enacted, ODP's program personnel began a statewide effort to
12 enroll the eligible persons from the Waiting List and match
13 each of them with service providers. It is important to note
14 that, after years without an active, successful effort to add
15 participants, the Waiting List Initiative sought to enroll two
16 times more in Fiscal Year '12/'13 than would enroll in an
17 average year. This is a significant operational change that
18 could not be overcome without the hard work, persistence and
19 collaborative spirit of those working to serve the ID
20 community. I want to thank all stakeholders, the families, the
21 supports coordinators, providers, and counties for their
22 efforts to execute this Initiative.
23 Despite some initial challenges, the enrollment
24 process is gaining efficiency throughout the year, with 124
25 participants enrolled in March versus an average of 62 per
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 11
1 month for the previous eight months. I am pleased to report
2 that ODP program staff projects that we will accomplish our
3 goal of enrolling 1,130 people by the end of the fiscal year.
4 As of April 26th, 2013, 432 of the graduates have been
5 enrolled, and 297 of those with aging caregivers have been
6 enrolled, including 29 unanticipated emergencies. Compared to
7 their respective totals, these enrollment figures represent 62
8 percent of graduates and 69 percent of those with aging
9 caregivers. In addition, there are 643 people presently
10 awaiting services, of which approximately half, or 322, will be
11 part of the Fiscal Year '12/'13 Waiting List Initiative.
12 Including those participants, 92 percent of the 1,130 are
13 either enrolled or identified and at some stage of the
14 enrollment process.
15 The people enrolling through the --- enrolling
16 through the Waiting List Initiative are taking advantage of the
17 broad range of services available within the waiver programs by
18 choosing the mix of activities best suited to their individual
19 needs. Notably, the majority of those enrolling in the
20 consolidated waiver are choosing to utilize home and community
21 habilitation services, the goal of which is to help
22 participants gain, maintain, or improve socialization and
23 adaptive skills. This service has the added benefit of
24 allowing participants to remain in their homes, where they're
25 comfortable and feel safe.
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 12
1 Others are choosing family living homes, where they
2 reside in a private home, with care providers and often another
3 waiver participants. This maintains a familial style of living
4 arrangement for the participants while providing the supports
5 they require for the foreseeable future. Also, family living
6 homes limit the investment needed to start new community homes,
7 reducing the financial risk borne by providers.
8 As a result of the funding you provided and the
9 efforts of all stakeholders, the number of people on the ODP
10 Waiting List is approximately 15,000, down from approximately
11 15,800 in December of 2012. Additionally, as of June 2012, 46
12 percent of the individuals on the Waiting List, classified as
13 needing services within two years, are receiving some ODP
14 services through the community waiver or based programs. While
15 I acknowledge there is more to do to serve those on the Waiting
16 List, the significant progress we have made --- seen so far is
17 very encouraging.
18 At ODP, we continue to embrace the evolution of
19 service delivery and strive to provide our participants with as
20 many viable options as possible. For example, I am currently
21 leading a comprehensive futures planning effort, including
22 representatives from all stakeholder groups, and seeking to
23 identify short and long-term goals that we will continue to
24 move the program forward.
25 I believe this year's Initiative has been extremely
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 13
1 successful for the participants, their families, and our
2 dedicated provider network. Despite the fiscal pressures we
3 are all under, we are grateful to have the resources to
4 continue our commitment to addressing the Waiting List. This
5 ensures that as many eligible residents of the Commonwealth of
6 Pennsylvania as possible have access to our programs.
7 I urge the legislature to approve the Governor's
8 propose --- proposal to continue expanding both ODP's
9 consolidated waiver and autism programs for Fiscal Year
10 '13/'14, providing much needed services to the state's most
11 vulnerable populations. I thank you for your time today. And
12 Representative DiGirolamo, I echo your statements in terms of
13 thanking our folks who have advocated so strongly for the
14 Waiting List Initiative for many, many years, especially
15 Visions for Equality and other very significant advocacy
16 organizations in our state. And I really appreciate their
17 efforts, and I very much welcome their partnership and
18 collaboration.
19 CHAIRMAN DIGIROLAMO: We've got some really
20 hard-working, dedicated people up there, Fred, around the
21 state. And some of them are here today, as I'm sure you know.
22 And again, thank you for your testimony today. I'm not quite
23 sure if you're able to stick around for a little bit. I mean,
24 I would hope you would be able to do that. We might have some
25 questions for you at the end of the meeting.
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 14
1 And the part about this comprehensive planning
2 effort, you know, I'm really encouraged by you saying that
3 you're going to be talking to stake --- stakeholders all around
4 the state. I think that's really, really important to get
5 their input and opinions as you move forward with this.
6 MR. LOKUTA: I appreciate hearing that. Thank you,
7 sir.
8 CHAIRMAN DIGIROLAMO: Okay. Thank you for your
9 testimony.
10 MR. LOKUTA: Thank you, Committee.
11 CHAIRMAN DIGIROLAMO: Some of the other members have
12 --- have come in. And I'd like them to just say hello and
13 introduce themself. Representative Dean?
14 REPRESENTATIVE DEAN: Thank you, Mr. Chairman. I'm
15 sorry I was delayed getting here. My name is Madeleine Dean.
16 I represent the 153rd in Montgomery County.
17 REPRESENTATIVE BROWNLEE: Good morning. I'm also
18 --- I also apologize for being late. This is Michelle
19 Brownlee, Philadelphia County, 195th District.
20 REPRESENTATIVE KINSEY: Good morning, everyone.
21 Representative Stephen Kinsey, Philadelphia County, 201st
22 Legislative District.
23 REPRESENTATIVE JAMES: Good morning. My name is Lee
24 James. I'm from District 64, Venango County, in western
25 Pennsylvania, and I wasn't that late.
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 15
1 CHAIRMAN DIGIROLAMO: Thank you. We're going to
2 bring our Panel Number One up under the title of introductions
3 and Overview. And on that panel is Sheila Stasko, from the PA
4 Waiting List; from Transition Family Success Stories, Tom
5 Carasiti, who's from Pike County, Tom, welcome; from the PA
6 Waiting List/Recommendations from the Pennsylvania Joint State
7 Government commission, Sheila again is going to do that; and
8 also from the PA Waiting List Numbers, Lisa Tesler, who is from
9 right here in Dauphin County. Welcome. And you can begin
10 whenever you're ready.
11 MS. STASKO: I'd like to thank you for having us
12 here. And I thank you, Representative DiGirolamo,
13 Representative Cruz and Representative Murt and all the members
14 for having us here this morning.
15 As families of children and adults with intellectual
16 disabilities and autism, we'd like to take this opportunity to
17 thank you for all your good works that you have done and for
18 allowing families to be able to have a hearing where we can
19 have a voice.
20 This year, 1,100 people came off the Waiting List.
21 It was a year that started out leaving people broken and
22 hopeless. That all changed when you all stood beside us and
23 fought with us. This year, the Governor has recognized the
24 great importance of funding intellectual disabilities and
25 autism, and has proposed funding for 1,200 people. Changing
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 16
1 the name of the Department of Public Welfare to the Department
2 of Human Services will help us. And House Bill 1114, Bill of
3 Rights, is what is needed to make the system work.
4 Our system is fractured, and we need your support.
5 We implore you to continue working with us to build and
6 strength a system that will protect our families and help our
7 children and adults thrive in the community. Our stories
8 continue. This hearing will also bring issues families face
9 and recommendations that make sense for people. We also want
10 to note that Secretary Mackereth and Deputy Secretary Fred
11 Lokuta have inherited many of the issues, so we need to --- to
12 put that out front. Thank you.
13 MR. CARASITI: Good morning, Representatives. My
14 name is Tom Carasiti, and I'm from Pike County. I was here
15 last March with my wife Terry in front of this committee with
16 my disabled son, Glenn. And Representative Murt, you may
17 recall you also met us at Governor Corbett's visit to Vision
18 for Equality last fall.
19 A year ago March, we were very concerned that our
20 son was about to graduate after 18 years of specialized
21 education with no support for adulthood. Without a Waiting
22 List Initiative, he was going to sit home, idle, with no future
23 or hope of working in the community. But thanks to members of
24 this committee, your efforts produced funding for 2012
25 graduates to continue their participation in a productive life.
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 17
1 We're well aware of your efforts, and we thank you deeply for
2 the funding.
3 I'd like to share one story about my son Glenn
4 regarding his work and his appreciation of that fact. What we
5 produce in our lifetime is what defines us and what gives us
6 the feeling of self-worth. It's no different for the
7 intellectually disabled. As soon as my son started working, he
8 would proudly say, I'm an adult, I'm responsible, and I have a
9 job.
10 Each year, starting around October, my son Glenn
11 would begin his Christmas list. He would continue to add to
12 this list right up until Christmas. Sometimes it was up to two
13 pages long. This past fall, it was about the first week in
14 December when my wife and I realized he hadn't started his
15 list. So we said, Glenn, when are you going to start your
16 Christmas list? His response was, I don't need a list. So we
17 said, well, why not? Because I have a job. I earn money and
18 can buy things. So Representatives, though intellectually
19 disabled, he still gets the connection between work and the
20 quality of life it brings. Just as he deserved the same chance
21 at education, Glenn and his peers deserve the same chance in
22 opportunities for work that you and I enjoy. Thanks for giving
23 him that chance.
24 MS. TESLER: Good morning. Oh, you ---?
25 MS. STASKO: Yes. Okay.
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 18
1 MS. TESLER: Sorry.
2 MS. STASKO: And now I'm going to be talking about
3 the waiting list a little bit. I am the mother of a young man
4 who's 36 years old. He lives at home with me and my husband.
5 We're from Lehigh County. There are 15,000 people waiting for
6 services and supports, 4,000 in emergency situations.
7 Emergency situations are defined as needing services
8 or supports within a six-month period, and yet we have families
9 who are out there languishing for years, decades. Why? What
10 are they waiting for? Well, they're waiting for community
11 services to be at home with their mothers and their fathers,
12 and their friends and their neighbors, where they grew up and
13 were raised. If they were waiting for institutions, we
14 wouldn't have a Waiting List. We could just simply fill them.
15 Families are the backbone of this system. Over 75
16 percent of people with disabilities live at home with their
17 families. The vision of independence, control, choice,
18 community, et cetera, was defined and embraced years ago in
19 documents, Everyday Lives, a Plan to Address the Waiting List.
20 Everyday Lives, Making it Happen. And then, of course, there's
21 the plan that I would like to talk about, the Plan to Address
22 the Waiting List, 2008. As you can see, there are many plans
23 that have been developed over the past 10, 15 years, and none
24 of them have been implemented. A little bit implemented around
25 2008.
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 19
1 The Advisory Committee on Waiting List for
2 Community-Based Intellectual Disability Services, 2008, was
3 developed at the request of Representative Kenney. All members
4 of the disability community came together and worked together
5 to produce a document that had five recommendations in it. Had
6 these five recommendations been followed, next year we would
7 have addressed the Waiting List. There wouldn't --- we would
8 have people just coming on, within a six-month period they
9 would all have services.
10 So you have the five recommendations, which I've
11 condensed, in your packets. And just briefly, the first
12 recommendation is we need funding. We need funding placed in
13 the budget every year, and it has to be consistent. We can't
14 have these --- these droughts where families really suffer
15 under the pinch of no services or supports.
16 Recommendation two, we're doing --- these past two
17 years, we're looking at funding of those 700 high school kids.
18 Recommendation three, establish a fiscal policy that
19 includes a reasonable and consistent increase annually based on
20 actual costs of maintaining existing service capacity.
21 Four, calling agencies and stakeholders together to
22 convene and identify methods for predicting and communicating
23 needs to the appropriate --- appropriate agencies and making
24 information available.
25 Five, conduct a process with stakeholder involvement
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 20
1 to look at greater efficiencies. We're talking about closing
2 institutions which could net a lot of money. How about
3 consumer control? That would be absolutely marvelous. Because
4 when you have a person who is being funded at home and is in
5 control of their budgets, then they're going to get what they
6 need, not what someone thinks that they need.
7 Representative Murt has introduced House Bill 1114,
8 establishing a Bill of Rights for individuals with intellectual
9 and developmental disabilities and conferring duties on the
10 Department of Public Welfare.
11 We urge your support. It's the right thing to do.
12 Life could change for all of us tomorrow, and we would be
13 expected to do things we never thought we would have to do in
14 this lifetime.
15 The past two years have been extremely difficult on
16 people and their caregivers. There is a fresh administration
17 in place. We are hoping that it will make sustainable change
18 that will be driven by families and self-advocates. Supporting
19 families should continue to be a top priority. Thank you.
20 MS. TESLER: Good morning, Chairman DiGirolamo and
21 members of the Committee. I want to thank you for the
22 opportunity for providing the time for us to testify today. My
23 name's Lisa Tesler, and I'm the Policy Coordinator for the
24 Pennsylvania Waiting List Campaign. I'm also the parent of a
25 17-year-old with autism.
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 21
1 You will hear testimony today from families about
2 the impact of the Waiting List and also stories of some of the
3 roadblocks and barriers that have been in place even after
4 they've been notified that waiver services are available to
5 them.
6 I would like to share with you an update from the
7 2012/'13 Fiscal Year Initiative to provide supports for 1,100
8 people on the Waiting List. Now, Fred covered these with more
9 updated numbers, so I won't go through detail. You do have a
10 chart in your packet about the enrollment process.
11 What I would like to mention is, in the fall of
12 2012, ODP decided to only allocate a portion of the waiver
13 capacity out to the counties because there was fear that there
14 would not be enough funding in the Initiative to support all
15 1,100 folks. The rationale behind this was, we'll send a
16 portion of the allocation out in the fall. We'll then --- they
17 were then going to analyze the budgets and take a look and see
18 if they could actually serve the entire Initiative, the entire
19 1,100 folks. But because of some of the delays in enrollment,
20 there weren't enough people far enough along to have a budget
21 for ODP to actually analyze those budgets. So they decided in
22 March of this year to allocate the remaining capacity to the
23 administrative entities. So now we are --- at the end of March
24 the numbers were 532 people out of the 1,100 folks that were
25 slated to enroll were actually receiving services. That is
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 22
1 less than 50 percent at that time. Now, Deputy Secretary
2 Lokuta has updated you, and they have assured us that the
3 enrollment will be complete before June 30th.
4 The Waiting List has serious concerns about the
5 delays in enrolling participants into the waiver programs this
6 year. We have asked for additional data from ODP that shows a
7 timeline for the various steps needed to get individuals into
8 services. We have also requested a workgroup be convened to
9 examine the systemic issues that cause delays and barriers to
10 enrollment. Some of the families you will hear from today will
11 speak from their personal experience about the problems and
12 issues that have surfaced during the course of this enrollment
13 process.
14 So what have we learned as a Waiting List campaign
15 this year. We learned back in the fall that there were
16 actually twice as many caregivers over the age of 60 than were
17 captured in the PUNS data. AEs were reporting back to the
18 state that more individuals met this criterion than were ---
19 than were captured in the PUNS process. So the supports
20 coordination organizations, the administrative entities and the
21 state need to address this oversight.
22 We also learned that the timeline from when a family
23 is notified that a waiver is available to when services begin
24 is much too long. ODP policy requires that a person be
25 receiving services no longer than 45 days from the date of
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 23
1 notification. And as you will learn today, often that time
2 frame is much longer.
3 We've also learned from various stakeholders that
4 the Supports Intensity Scale assessment may be part of the
5 problem. We have heard stories of families unable to move
6 forward due to the requirement that the assessment be done
7 prior to the individual support planning process.
8 The Waiting List Campaign would like to see changes
9 in the process and the system to remedy these problems. We
10 recommend all individuals in the emergency category should have
11 a comprehensive individual support plan developed and filed in
12 the home and community-based services information system. If
13 all folks in the emergency category have a plan in place, then
14 when enrollment letters are sent to families, they would only
15 need to update information and identify the specific providers
16 in the community to begin services. That would streamline the
17 timeline.
18 We would recommend that high school students begin
19 the ISP planning process while they are still in school. If
20 the system can anticipate and plan ahead, students and families
21 can be assured that they will not have to wait six to nine
22 months from their graduation date in order for services to
23 begin.
24 We would like ODP to reconsider their policy around
25 the Supports Intensity Scale assessment. Families report that
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 24
1 the Supports Intensity Scale has little or no impact on their
2 services or planning. We are holding up services and causing
3 delays and frustrations unnecessarily.
4 We would like to see training for all supports
5 coordinators on the appropriate and proper implementation of
6 the PUNS evaluation tool. There are serious concerns with the
7 accuracy of the data if the very basic information regarding
8 the age of the caregiver is not accurately reflected.
9 We would like ODP to notify the administrative
10 entities of their total waiver capacity commitment for the
11 fiscal year by October 30th. The holding back of capacity
12 causes undue burden on families. ODP needs to streamline the
13 waiver eligibility and enrollment process in order to meet the
14 45-day timeline for individuals to enroll. Waiver capacity
15 managers at the county, regional, and state level should more
16 closely monitor each individual's progress through the queue
17 and step in and provide assistance when delays occur.
18 Finally, the --- the Waiting List Campaign would
19 like to see a concerted effort to address the big issue of more
20 than 15,000 people waiting for services. While the $20 million
21 proposed funding for next year will meet the 1,200 people's ---
22 1,200 people in the emergency category and is a big step in the
23 right direction, it is still only a fraction of the emergency
24 category. There are still more than 4,000 folks in emergency
25 need. And with more than 6,000 individuals in critical
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 25
1 category, meaning they'll need services within two years, this
2 is a big problem that requires a big solution.
3 I would also like to add that these numbers do not
4 reflect the numbers of adults with autism in Pennsylvania. The
5 Bureau of Autism Services does not use the PUNS form to
6 evaluate the needs of individuals who need services. They have
7 a completely separate and different application and enrollment
8 process.
9 The Autism Census Project Report that was issued in
10 October 2009 indicates that there will be more than 10,000
11 adults living with autism in the Commonwealth by the year 2015.
12 The current system provides help for fewer than 500
13 individuals. And they have more than a thousand people on
14 their Interest List. So while we often talk about the Waiting
15 List and the PUNS numbers, we need to understand and remember
16 that there is this whole other population of folks that may not
17 be counted or reflected in that data.
18 So as Sheila said, we need to follow the five
19 recommendations of the Advisory Committee Report. If you had
20 executed that plan, you would have served 15,000 individuals
21 since 2009. That is the same as the entire Waiting List exists
22 today. We need to focus on providing supports and services to
23 families sooner and in their own homes by providing more
24 person, family-directed supports waivers. In-home supports
25 help keep families together longer and reduce the need for more
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 26
1 costly and restrictive residential supports. We need to work
2 towards parity in services for people who live with their
3 family and not hold them to a different stand and higher
4 scrutiny when deciding which services to authorize.
5 When residential services are needed, we truly need
6 to allow choice and control and not force people into settings
7 that are inappropriate or unwanted simply because that is the
8 vacant slot or bed available at that time. We need to close
9 large congregate settings and state institutions and reinvest
10 that funding into community supports. Thank you for your time
11 today, and I will be happy to stick around for questions at the
12 end.
13 CHAIRMAN DIGIROLAMO: Lisa, and Tom and Sheila,
14 thank you very much for your testimony. Very good, Lisa.
15 Thank you.
16 Next, I'd like to bring up our second panel, the
17 families and their stories. Okay. We have --- first we have
18 anonymous, which is going to be read by Nancy Richey; Kathy
19 Ross, who's from Pike County. If I ask everybody to come up,
20 if we have enough seats. Pat Deutsch, from Dauphin County;
21 John Hettinger, from Lycoming County, and it's going to be read
22 by Ed McNichols (sic); and ---
23 MS. DEPRIMO: Stacie DePrimo.
24 CHAIRMAN DIGIROLAMO: --- also Stacie DePrimo. We
25 have enough seats. Come up.
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 27
1 UNIDENTIFIED SPEAKER: It's easier to --- if we
2 don't need microphones, there's more seats.
3 CHAIRMAN DIGIROLAMO: I know we can move them
4 microphones around a little bit, ---
5 UNIDENTIFIED SPEAKER: Can we?
6 CHAIRMAN DIGIROLAMO: --- if need be. Okay. If
7 we're all seated, Nancy, when you want to begin ---.
8 MS. RICHEY: Yes. Thank you very much. Good
9 morning, everyone. My name is Nancy Richey. I'm the mother of
10 a young man with intellectual disabilities and autism. And I'm
11 very grateful for the supports and services that he receives
12 through the PFDS waiver. However, I'm here today to share a
13 story of another family who, as you will surely realize, is the
14 poster family for the brink of disaster. This mother has
15 requested to remain anonymous, so I'll be calling her Susan.
16 Susan is a mother of six children, two with multiple
17 disabilities, Mary, 17, and Melissa, 13. They're both in
18 wheelchairs, and they cannot talk. They cannot care for
19 themselves in any way. They must be spoon fed and they are in
20 diapers. They need total care, 24/7, for every need. They've
21 been on the Waiting List for years.
22 Several years ago, when Susan began having
23 significant health issues herself, her girls were moved up on
24 the Waiting List. Their teacher realized that Susan was
25 struggling and called a meeting between the school and the
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 28
1 county to see what help might be available. The county said
2 there was nothing they could do. Susan's frustration,
3 depression and despair increased, and yet she and her children
4 coped to keep going, to care for one another as best as they
5 knew how. She believed there must have been others in worse
6 circumstances, and so she did not ask for help from her county
7 until she had no choice, only then to be turned away in her
8 time of need.
9 Having a child with a disability is a family affair
10 and even more challenging if you happen to be a single parent.
11 Susan's older daughter was cyber schooled so that she could
12 stay home to help her mother. She missed a lot of her teenage
13 years caring for her sisters. The stress placed on the family
14 was incredible and increasing until finally Susan made the very
15 devastating decision to place the girls in a center. It broke
16 their hearts. They visited frequently, but the center was a
17 long distance away. Although Susan felt the care they received
18 was adequate, she couldn't bear with the fact that it was an
19 institutional environment and these were her children. Every
20 time they left from the visit to go home, everyone would be
21 crying. In addition, Susan later learned that no one from her
22 county MHID office had ever visited her daughters once while
23 they were placed there.
24 After a year, Susan just had to bring the girls back
25 home. She missed them and loved them so much. The older ---
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 29
1 oldest daughter resumed helping with their care until last
2 year, when she moved to a place of her own. Now Susan's other
3 daughter, who is 16, has taken over where the oldest daughter
4 left off.
5 Two years ago, Susan filled out the Medicaid waiver
6 applications for Mary and Melissa. Her county informed her
7 that they were not going to process the applications because
8 there was no funding available for waivers. The girls' case
9 manager has been changed for the third time in four years.
10 Susan has given up hope that they will ever be able to get the
11 help they need. Everyone tells her she needs to still be on
12 the Waiting List; however, after waiting this long, it seems
13 pointless to her. She feels terrible that her older daughters
14 have had to give up their teenage years in order to be
15 caregivers for their sisters. But if it weren't for them, she
16 doesn't know where they would all be today. She can't lift
17 Mary anymore, so bathing has been increasingly difficult. The
18 16-year-old daughter now bathes both her 17 and 13-year-old
19 sisters.
20 Susan has no extended family. And now things will
21 only be getting worse because last November she was diagnosed
22 with cancer. Recovering from surgery and chemotherapy leaves
23 her sick and so very weak. The county has been providing base
24 funding, which covers 30 to 35 hours a week for combined
25 services for the two girls, which equals roughly two to
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 30
1 two-and-a-half hours a day for each child. Susan is afraid to
2 go to the county and ask for more help out of fear that they
3 may come in, look at her situation, and remove her children
4 from the home.
5 The County Supports Coordinator has told her that
6 she doesn't need waivers and doesn't need to be moved up on the
7 category of need on the PUNS form because the county is
8 addressing their needs with base funding. The school district
9 staff can see the needs and have tried to help by bathing the
10 girls at school a few days a week. They also got approval to
11 increase the extended school year hours this summer to try to
12 provide more support, since the county and state have not.
13 The 16-year-old daughter has been helping with her
14 sisters and has recently quit school. Susan is now recovering
15 from her very most recent surgery just days ago. She's
16 frightened because her precious family is falling apart, and
17 she doesn't know what to do. So I ask you, can anyone please
18 explain why this family has been denied access to the supports
19 and services they so desperately and clearly need? Thank you.
20 CHAIRMAN DIGIROLAMO: Okay. Nancy, thank you.
21 Kathy?
22 MS. ROSS: Good morning, Representatives. My name
23 is Kathy Ross. Thank you for the opportunity to speak on
24 behalf of my sons, Michael and Christopher Ross, seated next to
25 me, regarding the impact of proposed budget cuts to human
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 31
1 services and the effect it will have on their lives and others
2 like them.
3 Michael and Christopher are identical twins who live
4 in Pike County. They were diagnosed at birth with Down
5 syndrome, which is Trisomy 21. It is a genetic disorder that
6 causes lifelong intellectual disabilities, as well as
7 developmental --- developmental delays. It is the most common
8 genetic cause of learning disabilities in children. There is
9 no medicine, surgery or any type of therapy that can cure it.
10 Michael and Christopher were constantly monitored by
11 various doctors and therapists since birth. They were both
12 born with heart defects, respiratory problems, and both --- and
13 poor cognitive and receptive skills. Christopher has limited
14 speech, while Michael uses a communication device. They both
15 use Sign Language. The boys have been attending life school
16 --- life skill classes since they were five weeks old. Their
17 educators have been phenomenal in supporting their needs and
18 development.
19 Michael and Christopher will turn 21 on June 8th.
20 They each have their own unique personalities. They are very
21 active, adventurous young men. They are wonderful, generous
22 and caring human beings. They are happy-go-lucky guys that
23 will melt your heart. You can always depend on them to make
24 you --- to make you smile even on the gloomiest day. They live
25 their lives wearing rose-colored glasses. Their love is
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 32
1 unconditional. They take you at face value and will never
2 judge you. They bring great joy not only to us but to everyone
3 they meet. I can never imagine what life would be without
4 them.
5 Through them, we have met so many wonderful people
6 from all walks of life that have helped us along the way. We
7 have also learned to have a great deal of patience. Our school
8 district, as part of their curriculum, are sending them to the
9 Human Resource Center, to a sheltered work program, two days a
10 week. They are closely monitored by professional staff who are
11 trained with special needs. They are being taught a job skill
12 in a small warehouse setting. They also learn how to act and
13 socialize appropriately in both inside and outside the work
14 environment. It teaches them responsibility and self-worth.
15 They look forward to going to work and seeing their friends.
16 Even though they graduate in June, they will never have the
17 opportunity to go out into the world to seek employment and
18 make a decent salary like you and me to enable them to support
19 themselves. They will also never be able to operate a motor
20 vehicle or live on their own, as we do.
21 Michael and Christopher will turn 21 next month, and
22 the proposed budget will bring everything to a complete halt.
23 There will be no funds for them to have a supervised and/or
24 sheltered work environment. My sons and countless others like
25 them will be subjected to becoming couch potatoes at home
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 33
1 because, although protected by rights and written law for the
2 education of the children, the same is nonexisting for those 21
3 and older. All of the intensive effort in training and
4 education for the child will be lost if there is no funds for
5 the adults' ongoing stimulation development.
6 The proposed budget will force my sons and countless
7 others to spend the workweek at home. Who will supervise them
8 and which parent will have to quit their job to stay home with
9 them, or their older child. Is there --- this isn't only about
10 the financial burden on the parents. It's about the throwing
11 out of all previous development and growth our laws did for our
12 society's most vulnerable and needy while under 21. Now we're
13 saying we no longer care and will not assist them throughout
14 adulthood.
15 I realize there is a fiscal crisis in this state, as
16 well as the others. I do agree we should manage our expenses
17 within our revenues. Resolving our state's fiscal crisis
18 should not come at the expense of the most vulnerable. I
19 implore you on behalf of my sons and others like them to
20 balance the budget through avenues other than pulling from
21 disabled citizens. We need to make sure we take care of those
22 who, through no fault of their own, can never take care of
23 themselves. Please do not waste any money --- all money on our
24 children's education by sentencing them to less-fulfilled
25 lives. Thank you. Kathy Ross, parent of Michael and
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 34
1 Christopher Ross.
2 CHAIRMAN DIGIROLAMO: Thank you, Kathy. And we need
3 to hear that. Thank you.
4 MS. ROSS: You're welcome.
5 CHAIRMAN DIGIROLAMO: Patty, ---
6 MS. DEUTSCH: Yes.
7 CHAIRMAN DIGIROLAMO: --- you're next.
8 MS. DEUTSCH: Good after --- good morning. Thank
9 you for listening to me. My name is Patricia Deutsch. I'm
10 from Hershey. And I'm here with my son Michael, who just
11 turned 22 years old. And he just graduated from the Hiram G.
12 Andrews Center one-year building maintenance program. And he
13 has been declared by his teacher ready for entry-level
14 employment in drywall and painting. He was able to attend that
15 school because he receives SSI. And he gave OVR, Office of
16 Vocational Rehabilitation, his ticket to work through SSI.
17 He was identified at age three and officially
18 diagnosed on the autism spectrum at age five. He's one of the
19 people that Lisa Tesler referred to who tests too high to be in
20 the ID system, so he can get services through Bureau of Autism
21 Services.
22 Michael is quiet and hard working. He wants a job
23 working with his hands and he wants his own apartment and a dog
24 some day. And I've been attempting to make these plans for
25 Michael with Bureau of Autism Services since he turned 21, over
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 35
1 a year ago. On the advice of his psychiatrist, he applied for
2 the ACAP, that's Adult Community Autism Program, under BAS. In
3 order to get on the Waiting List, he met with the Bureau of
4 Autism Services' evaluator a year ago, in May. He was, at
5 first, denied services last summer because they said that he
6 did not meet three areas of functional need. And I appealed
7 that and I proved that he did meet functional eligibility by
8 gathering documentation and sending it in, and then --- so they
9 did reverse that denial. But then they immediately denied
10 again because he was attending school outside of Dauphin
11 County, at Hiram G. Andrews. I appealed that again --- the
12 second denial last September over the residency issue, because
13 this is not consistent with Pennsylvania's State System of
14 Higher Education Rules. Your parents determine your residency
15 through that. And I think this is very inconsistent with other
16 state agencies as far as where the person resides.
17 We had a prehearing conference over the phone with
18 the Bureau of Autism Services. We reached an agreement
19 verbally that, as soon as he was back in Dauphin County, that
20 he could resume the ACAP process without having to start from
21 scratch and be reevaluated. And so I was in verbal agreement,
22 but they would not put that in writing for me. So I continued
23 my appeal. And my second appeal has been denied. Because of
24 the way that the law is written, the Administrative Law Judge
25 could not find a violation of the current law, but he did
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 36
1 actually say that he agreed with what I was trying to do. He
2 just could not rule in my favor.
3 This whole situation I think could have been
4 resolved if agencies such as Bureau of Autism Services and OVR
5 could work together to plan for these adults. Students should
6 not be penalized for seeking education outside the county of
7 their permanent residence. And I was also told the Bureau of
8 Autism Services is actually serving only 447 adults with autism
9 in the entire state. This level of service is unacceptably
10 low, especially considering the growth of the adult autism
11 population. How large does this problem need to be before more
12 funding is allocated to adult autism services?
13 And I'm also disappointed that Bureau of Autism
14 Services does not offer any case management or services for
15 those with less than three areas of functional need. If
16 someone on the autism spectrum needs help with only two areas
17 of need, they should be able to receive that help if that's
18 what they need to live independently. And when I complained
19 about that, they said, well, we're just using federal
20 standards. So I do need to update my written statement that I
21 actually did catch my OVR case manager on my fourth call in. I
22 had been leaving messages and could never get back. So he
23 actually does have an appointment to talk about a job ---
24 possible job placement through OVR.
25 So after a year of trying to plan, we really still
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 37
1 have no idea what services he will be receiving. And it seems
2 to me that there is no system for adults, just a few scattered
3 agencies with limited services that don't really coordinate
4 with each other. And they don't really seem to take
5 responsibility. There's no case management who I can go to
6 every time when I need something for Michael. And not every
7 adult on the autism spectrum will have family to help them for
8 their entire lives, so I think case management is really
9 necessary as these people grow older and their parents grow
10 older.
11 I don't think that Michael could have applied for
12 these services on his own and gone through all of this
13 paperwork either. That's another reason I believe there should
14 be case management for people, and they should do these things
15 for these kids as they become adults. I recommend that every
16 adult diagnosed with autism have a case manager to advocate for
17 them and be responsible for finding appropriate services for
18 the individual and their family. This will require sufficient
19 funding for adult autism programs. Our hopes for Michael is
20 that he will get enough support to be able to work and live
21 independently through his life. Thank you.
22 CHAIRMAN DIGIROLAMO: Patty, thank you. And next,
23 Ed.
24 MR. MCNICHOLAS: Hello.
25 CHAIRMAN DIGIROLAMO: Good morning.
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 38
1 MR. MCNICHOLAS: I'm Ed McNicholas. I'm reading
2 this for John Hettinger, who was not able to make it today.
3 John is a resident of Lycoming County. He is a single father
4 of three sons with disabilities. His oldest son, Jason, is 18.
5 He is a high school senior and has autism and epilepsy. His
6 middle son, Shawn, is 15. He is currently being provided home
7 education services and has autism and muscular dystrophy. And
8 his youngest son, John Michael, or, as they like to call him,
9 Mikey, is 11. He is in middle school and has severe
10 developmental delay and autism.
11 Along with being the sole provider for his three
12 sons, John is also fully --- full-time employed as the
13 developmental director for a local non-profit organization.
14 Although he was unable to attend the meeting today, he felt
15 that it was important to share their story in the hope that
16 those who are in the position to make system changes understand
17 the situation that families with special needs children
18 experience on a daily basis. The rest of this is his story.
19 Our story begins --- our story is somewhat unique,
20 and I will try to be as brief as possible. To begin, my middle
21 son, Shawn, has been on the Waiting List for the consolidated
22 waiver for over five years. The services currently provided to
23 him are simply not adequate to support his quality of life and
24 the stability of our family. As a result, he has been in
25 long-term hospitalization situations five times in the past
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 39
1 four years. These hospitalizations were far away from our
2 home, which not only gave him the sense of separation but made
3 visits from his family members difficult.
4 In addition to Shawn's hospitalizations, our local
5 school district has removed from the mainstream education
6 system due to inadequate supports to accommodate his needs. He
7 receives only five hours on home instructions in the evening
8 and is not provided with any day program outside of the home.
9 Under Shawn's current waiver, we are prohibited from using
10 habilitative services during the day when normal school hours
11 are in session. Therefore, as a single father, working full
12 time to support my family, and no other means of care for
13 Shawn, this means that I must take Shawn with me to work every
14 day, which, in most cases, does not always permit me to fulfill
15 all of my obligations to my employers. Although my employer
16 understands the situation, the concerns over the liability
17 incurred by my employer have been communicated to me many
18 times.
19 To make matters even more difficult, three of our
20 only natural supports have been lost this past year. First, my
21 mother, my sons' grandmother, passed away in February of last
22 year. Second, my adult daughter moved to Florida. And third,
23 a longtime friend and roommate of my family was admitted into a
24 personal care home several weeks ago due to a major seizure.
25 The loss of these three natural supports has caused a major gap
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 40
1 in the stability of our family and has created a crisis
2 situation for us.
3 For over five years Shawn has been on the Waiting
4 List for consolidated waiver services under the PUNS as
5 critical. This status has not been changed throughout the past
6 five years, and he still waits for services. Although he
7 currently receives services through the PFDS waiver, he is at
8 the maximum level of services under this waiver and still does
9 not receive adequate support. Without addition --- without
10 additional support for Shawn, it has been suggested to me that
11 Shawn be taken to a residential center in Philadelphia, where
12 he can receive the supports that he needs. This is not the
13 first time this has been suggested to me over the past five
14 years. I cannot fathom the idea of any parent being placed in
15 a situation where they have to decide to send their child far
16 away from home simply to receive the care that could be
17 provided for them in their home.
18 Next, my youngest son, John Michael, or Mikey, has
19 been on the Waiting List for the PFDS waiver for over three
20 years. He has been placed on the PUNS under the same premise
21 as Shawn. The same losses of natural supports that have
22 created hardships for Shawn apply to Mikey as well. However,
23 in Mikey's case, he does not receive any home and
24 community-based services of any kind. And being on the Waiting
25 List for over three years has created a situation where Mikey
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 41
1 cannot participate in community activities. In addition, due
2 to transportation issues, I must bring Mikey to work with me
3 every morning and leave mid-shift to drive him to school and
4 then return to work. Imagine a workday where you bring two
5 special needs children with you and have to leave halfway
6 through your workday every day to drive one of them to school,
7 then return to work while still attempting to care for the
8 second child in your place of employment all day long.
9 As an individual who has worked in the social
10 service sector for many years, I am aware of the need for
11 fiscal responsibility and the need to reduce waste and abuse
12 within the Commonwealth. However, reducing the funding for
13 services, eliminating services, or establishing waiting lists
14 for services is not the option to achieve fiscal balance.
15 Although the Commonwealth is on the right track by
16 focusing on eliminating waste and abuse within the service
17 system of users and providers, the persons who need and use the
18 services effectively should not be penalized. As my family,
19 these services are crucial for our stability and allow my
20 children to reach their full potential.
21 I strongly urge you to consider doing whatever
22 possible to serve those in need of services who have been
23 placed on the Waiting List. I can tell you firsthand how
24 difficult it is to face the choice of placing a loved one in an
25 institution because of being told that a waiting list for the
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 42
1 services need to remain in the community is in place. Thank
2 you.
3 CHAIRMAN DIGIROLAMO: Thank you. And next, Stacie.
4 MR. WHITEHEAD: I'm Ned Whitehead. I'm a friend of
5 Stacie's. And I just want to introduce her to you. Stacie
6 will be speaking on behalf of herself and also her twin sister,
7 Sydney, both who receive services through the Office of
8 Developmental Programs. So Stacie?
9 MS. DEPRIMO: Hello. My name is Stacie DePrimo.
10 Every one of my teachers and friends are worried about me and
11 my twin sister, Sydney, and what we're do --- what is going to
12 happen to us when we graduate.
13 We have a lot of friends through school. We just
14 turned 21 in November of 2012. This is our last year of school
15 --- high school. We moved between different --- seven
16 different foster homes since we were 15 years old. Sydney and
17 I left Children & Youth Services because we turned 21. Our
18 supports --- support is paid from county-based funds. They are
19 paying for life sharing, but we were not sure how long that
20 funding would be able to last.
21 We do not have a waiver. We don't know what else
22 will we need or how we will pay for it. We do a lot of things
23 at school. I like basketball and track. I made lots of
24 friends. We try to help everyone get what they need so they
25 can get --- so they can all do their jobs.
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 43
1 I work at a local theater. I clean and get a lot
2 --- get to see a lot of people. I have a lot of free tickets
3 to go to the movies. Without funding for home and community
4 waiver --- based waivers, we will lose on all of the commun ---
5 connections we made in our school and our community.
6 The county is paying over $52,000 for us. We were
7 told that our county did not have a base funding since November
8 of last year, so they couldn't pay for our people. Where will
9 we live? Thank you.
10 CHAIRMAN DIGIROLAMO: Good job, Stacie. Really good
11 job. And again, that ends the panel. And I want to thank you,
12 each and every one of you all for the really, really compelling
13 stories. And again, as I said to Lisa, I think it's good ---
14 we need to hear these stories because, as we make the decisions
15 on funding and budget, I mean, we have to keep these stories
16 and your experiences in mind when we do that. So thank you all
17 very, very much for your compelling testimony.
18 Our next panel, again, some family stories on the
19 obstacles in navigating the intellectual disability system. If
20 you would come up. And I'd like to recognize the presence of
21 Representative DeLissio. Pam, welcome.
22 We have Suzi Bergman from Huntingdon, Debbie Leggins
23 from Westmoreland County, Cynthia Porter from Bradford County,
24 Tom Carasiti again from Pike, Ted (sic) Whitehead from Bradford
25 County, and we have a video at the end about family success
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 44
1 stories from Mrs. Lewis. Suzi, if --- I think you're first.
2 If you want to begin when everybody's settled and situated.
3 MS. BERGMAN: Hi.
4 CHAIRMAN DIGIROLAMO: Hi. Good morning.
5 MS. BERGMAN: My name is Suzi Bergman. This is my
6 son, Aaron. I am a wife and mother of four beautiful children.
7 I live in Westmoreland County. Aaron was born in 1994. He was
8 a perfectly-healthy child. He developed normally until, at
9 about age two-and-a-half, he had his first seizure. He was
10 diagnosed with Lennox-Gastaut syndrome, which is a rare,
11 devastating epilepsy disorder. There is no cure. We were told
12 that he would not survive past the age of seven. The first
13 recommendation we received was to institutionalize him because
14 he would never be able to handle his needs. We found new
15 neurologists.
16 Over the past 17 years we have fought a constant
17 battle with doctors, hospitals, schools, the county, and this
18 terrible disease. Aaron has had several medical and dietary
19 interventions to no avail. We felt like we lived in the
20 hospital until the doctors gave up. Our main goal was to first
21 keep this child alive, and secondly, to make sure that his
22 quality of life was better than anyone foretold. With LGS,
23 there is constant regression. I would potty train him, we
24 would have a big bout of seizures, and he would lose everything
25 that we taught him. I would teach him his A, B, Cs, he'd have
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 45
1 a seizure, the same outcome. It has been a constant, everyday,
2 all-day struggle to keep him safe, to keep him moving forward.
3 There were many setbacks, but somehow my family managed to
4 continue.
5 We applied for waiver funding in 2003. In 2008 we
6 received the PFDS funding. That's five years on the Waiting
7 List. In subsequent conversations with the county, we were
8 told that if we pursued the consolidated waiver at that time,
9 that we would have to put him into a group home setting
10 immediately. So we didn't pursue the consolidated waiver. Our
11 goal was to always keep Aaron in our home as a part of our
12 family.
13 Over the years our situation has become more dire.
14 Aaron is now a 19-year-old man with several types of seizures.
15 The majority of seizure activity is at night, which, in turn,
16 causes loss of sleep on the entire family's part and leads to
17 behavioral issues with Aaron. He is also developmentally
18 delayed. We are unable to meet his needs in our home anymore.
19 We have done everything we can to keep him safe. Our family
20 literally lives under lock and key. We have jumped through
21 every coop --- every hoop the county has presented. We have
22 had several systems meetings, have hospitalized him in Virginia
23 for four months, and now at Western Psychiatric for the last
24 three. We have brought in wraparound services, nursing
25 services, psychiatrists, neurologists, psychologists, et
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 46
1 cetera. We have done all of this at the county's request.
2 Every time we are told to do this one last thing, we are given
3 another hoop to jump through and still have not received the
4 consolidated waiver funding.
5 The money spent on pursuing the consolidated waiver
6 funding could have been better utilized. We have now been on
7 the Waiting List for consolidated for six years. The financial
8 difficulties have been tremendous. I had to resign from my
9 place of employment to stay home to care for Aaron. After 17
10 years, our family is finally starting to break. Sorry. My
11 13-year-old daughter is having a hard time coping. I am not
12 sure how my marriage has stayed alive at this point. We are
13 bordering on poverty level. I have daily meetings with
14 hospitals, insurance companies, government officials in the
15 county, and Aaron, Aaron is sitting in a hospital, waiting, in
16 a completely inappropriate setting, losing all of the skills I
17 have spent years maintaining, waiting for a group setting.
18 It's terrible. We spent all these years trying to make this
19 child's life all it could be for us to end up here, punished
20 for not having him in the system, for not using the system for
21 all it's worth, for not institutionalizing him. Now that we
22 need the help, we are being refused it. Shame on the system of
23 ours for being so broken.
24 I am here to ask you, to beg you, to fix the system
25 for this family, for my family, for my Aaron, and for all of
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 47
1 the other families stuck in this spiral of endless red tape and
2 inefficiency. Thank you.
3 CHAIRMAN DIGIROLAMO: Okay, Suzi. Thank you. Next,
4 Debbie.
5 MS. LEGGINS: Hi. Thank you for allowing me to
6 speak with you all this morning. My name is Debbie Leggins,
7 and I live with my husband, Joe, in Westmoreland County. We
8 have two sons. Our youngest son, Scott, has Down syndrome and
9 autism. He still lives at home with us because that's what
10 makes sense for him and for us. And it is our goal to keep him
11 with us as long as we can. He does require total care, 24/7,
12 and he is considered nonverbal. I am fortunate that I work for
13 The Arc, and I am part of the Achieva Family. As one of their
14 disability advocates, part of my job is to make sure that I
15 understand the system so that I can help other families through
16 this. And I have received training, and I was asked to speak
17 specifically about the Supports Intensity Scale, because it's a
18 very confusing, time-consuming system. And even with my
19 training, I found it to be time consuming, confusing and
20 cumbersome. I didn't find it to be of any true value in
21 developing a support plan for my son. We have done two SIS
22 plans for him --- or two SIS evaluations for him. They were
23 done after the ISP was developed. I'm the expert on my son. I
24 know what supports he needs. So it doesn't make sense to me to
25 have someone come in and say how often per day, per week, per
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 48
1 month, that he needs supports.
2 Some of the statements that have resulted and been
3 put into his ISP from this SIS evaluation are completely
4 inappropriate and untrue. They will say things like he throws
5 tantrums, he wanders, that he needs full physical support to do
6 activities. And we've actually had staff that we've had to
7 fire because they interpret the full physical support to mean
8 that if Scott chooses not to do something, that full physical
9 support means that they can make him do it.
10 They also say that he needs full physical and
11 extensive support to prevent assault and injury to others. He
12 has never assaulted anybody. He may tell you, no, no, no and
13 push you away, and if you don't listen to that, he may take a
14 swipe at you, he might try to kick you, but he certainly has
15 never assaulted anybody.
16 I was provided some information from the
17 Commonwealth of PA, the Department of Public Welfare and OPD,
18 on the amount of money that has been spent since the Fiscal
19 Year '07/'08 through Fiscal Year '11/'12. And the Fiscal Year
20 '07/'08 was January through June, so it wasn't even a full
21 year, and it come to $11 million --- $11.5 million. And then
22 they stated that there was an additional expense of about
23 $42,000 per year to implement the SIS. As a parent, my son has
24 PFDS. He is on the consol --- or on the Waiting List,
25 emergency, for consolidated. Has been since high school, and
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 49
1 he's 29 now. I was just appalled whenever I saw the amount of
2 money that was being spent on a tool that really doesn't
3 identify or support appropriate supports for the ISP.
4 They did not have the Fiscal Year for '12/'13. But
5 with the increases, it would be at least another $3,042,000.
6 So I'm asking that you all look at how this money is being
7 utilized and spent, because we have people like Suzi who really
8 have hopped through every hoop. My son is waiting, but I work
9 for an agency that I have some flexibility, and they're very
10 supportive. And all the other families, the stories I've heard
11 this morning, that this could really provide the support that
12 they need. Thank you.
13 CHAIRMAN DIGIROLAMO: Debbie, thank you. And next,
14 Cynthia.
15 MS. ELIZABETH PORTER: Good morning. My name is
16 Elizabeth Porter.
17 MS. CYNTHIA PORTER: And my name is Cynthia Porter.
18 My husband, Verdap (phonetic) Porter, and I, along with our
19 three children, Elizabeth, Alexander and Catherine, are
20 residents of Bradford County. On behalf of our family,
21 Elizabeth and I present the following.
22 On August 16th, 2013, our daughter Elizabeth will
23 turn 21 years of age. Because Elizabeth has the chromosomal
24 disorder Down syndrome, she will be eligible at that time to
25 receive a waiver that would ensure the support she needs to be
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 50
1 a vital and independent woman in her community. Since
2 Elizabeth's birth, August 16, 1992, Elizabeth has received
3 support services as a result of the Individuals with
4 Disabilities Education Act, known as IDEA. Because of that
5 legislation, Elizabeth received intervention since infancy.
6 The home-based and center-based instruction encouraged
7 appropriate development. Upon entering school, Elizabeth had
8 the necessary support services to be included in the classroom
9 from kindergarten to high school graduation.
10 Within the high school setting, Elizabeth was a
11 leader within her academic classes. She was a member and
12 secretary of the Students Against Destructive Decisions. And
13 she was a member of the Sayre Area High School Swim Team.
14 Elizabeth, what swim events have you done at high school?
15 MS. ELIZABETH PORTER: I competed the 100 Butterfly
16 and the 500 Freestyle.
17 MS. CYNTHIA PORTER: And during your junior year,
18 what was an important event that happened?
19 MS. ELIZABETH PORTER: My class voted me for the
20 Junior Prom Queen.
21 MS. CYNTHIA PORTER: Further, the application of the
22 IDEA Act within the school community allowed Elizabeth to
23 transition in 2012 from Sayre Area High School to the Center
24 for Independent Living and Learning Studies, known as the CILLS
25 Program at East Stroudsburg University, under the direction of
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 51
1 Dr. Domenico Cavaiuolo. Within that college-certificate
2 program, Elizabeth has been able to continue to develop her
3 independent living skills, academic skills, and vocational
4 skills.
5 Elizabeth, while within the CILLS Program, what
6 courses or activities have you ---
7 MS. ELIZABETH PORTER: Well, I take ---.
8 MS. CYNTHIA PORTER: --- have been doing? Sorry.
9 MS. ELIZABETH PORTER: Well, I take personal finance
10 to help me work with money. I work on computer for all my
11 courses. And I also work with children who cannot hear or see
12 well.
13 MS. CYNTHIA PORTER: As Elizabeth has explained, the
14 CILLS Program at East Stroudsburg University is helping
15 Elizabeth prepare well to enter the community. Elizabeth will
16 be able to work in a library, work with children, or work with
17 computers. Had Elizabeth not had the intervention from infancy
18 to 20 --- age 21, her motor skills, cognitive development, and
19 speech intelligibility would not have allowed her to reach her
20 highest potential. She would not have been able to live and
21 interact well within any community setting. However, as you
22 can see from Elizabeth's life story, the funding, because of
23 the IDEA Act and the wonderful individuals who use those
24 resources to address Elizabeth's needs, have allowed Elizabeth
25 to have the highest quality of life.
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 52
1 When Elizabeth turns 21 on August 16th, 2013, the
2 waiver funding will be a significant resource, just as the
3 Individuals with Disabilities Education Act supported Elizabeth
4 since birth. With the waiver funding, Elizabeth will continue
5 to be a vibrant, productive citizen within her community.
6 MS. ELIZABETH PORTER: Thank you.
7 CHAIRMAN DIGIROLAMO: Thank you, Cynthia. And thank
8 you, Elizabeth. Tom, you're next.
9 MR. CARASITI: Good morning again. I'm still Tom
10 Carasiti. Still from Pike County. I'd like to recommend
11 possible improvements to the waiver system processing. The
12 length of time from the availability of funds to when service
13 actually begins for waiver recipients should be reduced. And
14 this would lessen the burden on families that have to struggle,
15 maybe leave their job, to supervise their son or daughter
16 during this time frame.
17 You, some of your colleagues and many advocates
18 across the state worked very hard this past year for the
19 Waiting List Initiative funding. But there are some just now
20 receiving those funds or only now being notified of an
21 enrollment slot. My son's processing took four months. I know
22 of a parent who was notified early November of her son's
23 enrollment slot, and it took until just three weeks ago for his
24 eligibility to begin.
25 From a consumer's perspective, the process is also
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 53
1 confusing and filled with new jargon. There is the MA51, the
2 PUNS, the ISP, the SIS, and the QIDP to be completed in order
3 to obtain the PFDS. Very confusing to the newcomer. But
4 actual hands-on processing time by the administrative staff to
5 gather and enter the data into the system is only one week.
6 That means almost 90 percent of the elapsed time we experienced
7 is workflow delays, such as scheduling, department hand-offs or
8 in-basket queues. And sometimes, as in the case of my friend,
9 a hand-off between a county administrative office and the
10 county assistance office is missed, and the entire process is
11 stalled to a halt, which can lead to over a month of no
12 activity until the break in the chain is discovered.
13 So from my own observations and conversations with
14 subject experts at my county administrative office, some
15 changes could improve the process. So we offer some
16 recommendations. One, many of the various data collection
17 forms I stated above are separate meetings with the consumer,
18 and some of them gather identical data. The administrative
19 office should consolidate and eliminate duplicate data
20 collection and have just one sitting with the consumer for all
21 the forms. This could save at least two weeks of elapsed time.
22 The second recommendation would be that there needs
23 to be confirmation of department hands-offs, have to be added
24 to the process to avoid breaks in the chain. And this can save
25 several weeks or months of unnecessary delays.
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 54
1 Third, there should be just one administrative face
2 to the consumer that can provide realtime status, and this
3 person needs access and open communication to all queues and
4 supervisors, even those outside their department, which they
5 currently don't. And this will also help avoid those breaks in
6 the process that can lead to weeks or months of unnecessary
7 delays.
8 And fourth, mandate that all service providers begin
9 services from the effective date, when the county
10 administration portion of the process is completed. Payment to
11 providers can then be made retroactive to this effective date
12 once the county assistance office completes the Medicaid funds
13 or, better still, have the Medicaid funding side or silo of the
14 process run simultaneously as the --- when the administrative
15 side of the process. Either of these methods would reduce the
16 time by half.
17 Representatives, again, thank you for your
18 consideration. If one or all of the above recommendations or
19 controls can be added to the waiver processing, it can produce
20 the following benefits. It will reduce the idle time for the
21 individual, which can lead to regression or depression. It
22 will reduce the financial burden of families having to lose job
23 income or job loss to supervise their son or daughter during
24 this time frame. And lastly, it makes full timely use of the
25 funds you, your peers and state advocates work so hard to
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 55
1 procure. Thank you.
2 CHAIRMAN DIGIROLAMO: Next, Ned.
3 MR. WHITEHEAD: Good morning, Representatives. My
4 name is Ned Whitehead. I'm from the little town of LeRoy, in
5 Bradford County. I have four sons. My oldest son is diagnosed
6 with cerebral palsy. And I'm here to speak about the
7 Individual Support Plan, or the ISP, and the Supports Intensity
8 Scale, or the SIS.
9 The Individual Support Plan and the Supports
10 Intensity Scale are a very confusing part of our family's
11 lives. They are time consuming, confusing, misunderstood, and
12 difficult to use for planning. State regulations are
13 overlooked by many of our supports coordinators and county
14 administrators. Changes are made in our family's Individual
15 Supports Plan without their input and knowledge. A person's
16 services are changed or dropped without our family member's
17 knowledge. There are resources through the Individual Support
18 Plan that are available to our families. But most individuals
19 and families don't know how to request these services or are
20 unable to file the appropriate paperwork. The outcomes for the
21 Individual Support Plans are difficult to focus on, understand
22 or write. Many of our supports coordinators struggle with
23 writing a comprehensive outcome, yet these outcomes are what
24 drives our family support and services. They are required to
25 be written to ensure health and safety of our family members.
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 56
1 If they aren't correctly written or fully implemented, our
2 families do not get the everyday life that we strive so hard
3 for them to receive.
4 The Supports Intensity Scale was developed to work
5 with the Individual Support Plan. It is supposed to enhance
6 and capture when and where the individual needs and supports
7 and what level of supports is needed. It is supposed to work
8 hand-in-hand with the Individual Support Plan on the
9 implementation of those supports and services. The state has
10 always struggled with trying to marry the Supports Intensity
11 Scale and the Individual Support Plan.
12 The level of integration between the two documents
13 has never happened. The Supports Intensity Scale is written
14 only to be ignored. Here we have the documentation of our
15 family member's needs that goes unused. Time and money that is
16 put into the development of the Supports Intensity Scale is a
17 waste of valuable resources that could be better used on
18 supports and services for our family members. Millions of
19 dollars have been spent on the Supports Intensity Scale could
20 have been --- could have taken thousands of people off the
21 Waiting List. Thank you.
22 CHAIRMAN DIGIROLAMO: Okay, Ned. Thank you. And
23 Karen's got a video.
24 VIDEO PRESENTATION
25 CHAIRMAN DIGIROLAMO: Okay. I don't know what to
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 57
1 say. That was really pretty amazing to hear the stories. And
2 Suzi, it's just amazing to hear your story. Thank you for
3 being here today, for your courage. And Elizabeth, are you
4 still swimming?
5 MS. ELIZABETH PORTER: Yes, I am.
6 CHAIRMAN DIGIROLAMO: Okay. Good for you. I'm a
7 swimmer, too.
8 MS. ELIZABETH PORTER: Oh, no kidding?
9 CHAIRMAN DIGIROLAMO: I bet you could beat me,
10 though. Really, I mean, you know --- and again, it's great to
11 hear the good news on the Waiting List, but we've got --- it's
12 good to hear your stories because we've got some important
13 decisions to make on important issues when it comes to the
14 budget, when it comes to --- we're holding a hearing next week,
15 actually, on the effects of the human service cuts and on the
16 block grant, which I have been very open about not being very
17 happy about, and also a big issue hanging out there on Medicaid
18 expansion that we're going to have to make a decision. So
19 we've got some important issues out there, and it's really good
20 for this committee to hear your stories as we move forward and
21 make those decisions. So again, thank you all very much for
22 being here.
23 Is Audrey here? Okay. Our next panel, I think we
24 have some people from Visions for Equality, Audrey, Nancy and
25 Maureen. Okay. And the panel is on system issues. And does
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 58
1 Nancy want to go first?
2 MS. MURRAY: Sure. Good morning, and thank you for
3 the opportunity to testify during this important hearing. As
4 you're witnessing today, people with intellectual disabilities
5 and their families face many, many barriers to accessing
6 services; however, we also have strategies and solutions to
7 address many of these issues.
8 First of all, as you've heard, decision makers have
9 to realize that when a personal critically needs services,
10 especially when there is an emergency, they cannot and they
11 should not have to wait for services. The word emergency means
12 there is an immediate and critical need for assistance. We
13 would like to see a firm commitment, a continued commitment,
14 from Governor Corbett and the Pennsylvania Legislature to, once
15 and for all, develop a long-range plan to eliminate the Waiting
16 List for services and for Pennsylvania to become the first
17 large state in the United States to end its Waiting List
18 crisis.
19 Tomorrow, many of us are going to be with Governor
20 Corbett in Pittsburgh. He's chairing the National Governors
21 Association Meeting on Employment for People with Disabilities.
22 Pennsylvania is seen across this country as a leader in the
23 employment of people with disabilities, and we have all of the
24 resources to become the first large state to end its Waiting
25 List crisis.
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 59
1 In terms of eligibility issues, as you have heard,
2 the current eligibility system is too burdensome, bureaucratic
3 and does not meet the needs of truly vulnerable people. The
4 waiver eligibility paperwork submitted to our county assistance
5 offices, whose staffs are overwhelmed and understaffed, the
6 process is always delayed. Initial and ongoing eligibility
7 paperwork may be out of date before it is reviewed, and
8 benefits are lost, requiring an appeal, before they're
9 reinstated. Benefits usually do get reinstated, but it's an
10 efficient process, and it's very cost inefficient.
11 For some programs, many programs that you've heard
12 about today, medical examinations are required annually. IQ
13 scores are required for initial eligibility. State-issued
14 identification is required. And financial information may be
15 required every month. For families in which the primary
16 caregiver is ill and/or elderly, and you've met many of these
17 families today, and for families that lack transportation,
18 especially in rural areas of Pennsylvania, a family member may
19 never become eligible for services or they may lose the
20 services that they've worked so hard to get; therefore, we
21 recommend a more streamlined, less bureaucratic eligibility
22 system and assistance for families who find it difficult to
23 access these services.
24 In terms of our home and community-based services,
25 we recommend that the person/family-directed support waiver
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 60
1 have a higher cap, maybe in the range of $40,000 to $50,000 a
2 year. This would enable more people to be served in their own
3 homes. If this cap was increased, fewer people would need the
4 more expensive, consolidated waiver.
5 We must also strengthen the organizations which
6 provide community services. First, we recommend a more
7 reasonable method for setting rates to better account for
8 geographical factors. I think most people in the room would
9 agree that the cost of providing services in Potter County is
10 much different than providing services in Philadelphia or
11 Pittsburgh.
12 Second, we recommend higher rates and more robust
13 community supports for people with complex medical and
14 behavioral issues. These people are often unnecessarily placed
15 in very expensive settings, and they languish there for many
16 months or years when they could be supported more cost
17 effectively in the community and the savings redirected to
18 serve people on the Waiting List. And Aaron, the person that
19 you heard about earlier, is a perfect example of this. Right
20 now, in Pennsylvania --- or in Pittsburgh, in Western
21 Psychiatric Institute and Clinic, we have some people who have
22 been there for more than one year.
23 We also recommend developing a system to pay
24 stipends to family members who are their family's caregivers.
25 Pennsylvania and most other states already lack a sufficient
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 61
1 number of direct support workers, and it is predicted
2 nationally that this trend is only going to continue to worsen.
3 While most people already live with their family members, we
4 believe it's about 75 percent, it only makes sense to pay
5 stipends to family members, again, which is more cost
6 effective.
7 Last but not least, we firmly support community
8 services and oppose the continued operations of Pennsylvania's
9 five state centers. Many states are gradually closing their
10 institutions, providing quality community supports to people
11 who were once housed in these segregated settings, and again,
12 redirecting the cost savings to people on the Waiting List. We
13 recommend that Pennsylvania finally develop a true Olmstead
14 Plan that will be a model for other states. Thank you.
15 MS. COCCIA: Thank you. I would like to thank the
16 members of the Committee today for the opportunity to speak
17 here today. This has been an extraordinary opportunity you
18 have given to us again this year to testify before you. My
19 name is Audrey Coccia, and I'm co-founder and co-executive
20 director of Vision for Equality, a statewide advocacy
21 organization that represents thousands of people with
22 intellectual disabilities and autism and their families across
23 the State of Pennsylvania.
24 Along with my role at Vision, I'm a proud mom. My
25 daughter's name is Gina. She has an intellectual disability.
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 62
1 She's 48, and she lives at home with her dad and myself. Some
2 of the folks who have spoken to you this morning and have ---
3 give you and the Governor their heartfelt thanks on behalf of
4 those who have been lucky enough to have finally gotten
5 services due to the strong advocacy you have given on their
6 behalf. Others today have spoken to you about how hard it
7 still remains to navigate the system, even when, because of
8 you, their loved one has been identified to be served; yet, for
9 some reason, they still wait. Others have spoken to you about
10 their loved ones continuing unmet need, and it's very painful
11 to listen to.
12 I, too, come here today to thank you for all the
13 support, personally, for what have you done for the Waiting
14 List over the years, even during hard fiscal times. I thank
15 you for stepping up in spite of controversy and division,
16 especially last year, to help families like the ones you see
17 here today. You've certainly made a difference in people's
18 lives.
19 I also want to share with you my great concern about
20 the failings that still remain in the system that keep it from
21 working the way it should. I have been involved in the
22 disability system for the better part of the last 40 years. I
23 can say unequivocally that, during that time, our state has
24 moved in the forefront of change in upholding the rights of
25 people with disabilities and providing opportunity for them to
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 63
1 live and flourish in their communities. We have proudly been
2 the leaders in our state, and people like Governor Ridge, who
3 has forwarded and has taken thousands and thousands of people
4 off the Waiting List rolls. We've seen hundreds of young
5 people leave school, and with just a little support from the
6 system, join the ranks of the working class, contributing to
7 our communities. We have seen the downsizing of state centers
8 and the productive, rich lives of those who have returned to
9 their communities. We've seen the establishment of
10 self-advocacy groups, developing emerging leaders who are
11 teaching others about community, jobs and rights. We've been
12 on the cutting edge of change that has led to choice,
13 independence and freedom for those with disabilities. We from
14 Pennsylvania have proudly led the way.
15 Yet now, in spite of the benchmarks we have
16 achieved, our system is unraveling. Fiscal constraints and
17 flat funding year after year imposed by the state are obliging
18 agencies to consider going out of business or shutting down
19 community homes, closing workshops or laying off --- off much
20 needed staff. We have counties considering imposed cuts to
21 services for people living at home, who rely heavily on base
22 funds for just a little help. We are watching our community
23 system shrink to such a point there remains less than a handful
24 of community placements for emergencies when they occur.
25 Providers are closing their doors to those with exceptional
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 64
1 need. And more and more people are going to state centers and
2 private intermediate care facilities due to lack of adequate
3 community funding for those with increased behavioral needs,
4 and we have particular concern about this. More people are
5 going into nursing homes, and I have witnessed this myself
6 firsthand. They do not need to be there. But because the
7 agencies are finding ways of needing to turn down the most
8 fragile, medically high cost individual, who need the most
9 help, that's where they are landing.
10 We are forcing, by our lack of vision, many people
11 back into the most costly settings and decreasing much needed
12 funds to the community. All of this is creating instability in
13 our system and robbing people and families of any sense of
14 permanency in their lives. For me, it doesn't show any
15 foresight, and it certainly doesn't make any fiscal sense.
16 This watershed requires our attention. We are at a
17 transforming moment when we must decide whether we, as a state
18 and as an intellectual disability system, want to continue to
19 go down that road we are going, where only hundreds are
20 trickling off the Waiting List, thousands are still waiting
21 year after year without services, where underfunding enables
22 our inadequate infrastructure to not be effective in responding
23 to people's needs, providers refusing or handing back people in
24 critical need because of insufficient funding, allowing state
25 centers to once again become a haven for the unwanted,
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 65
1 accepting nursing homes as a place to abandon people whose
2 needs outprice our present provider rates. We are reverting
3 back to a system that will end up costing more, serving less,
4 and would be a great injustice.
5 I tell you the answer's not in driving people into
6 state centers, privatized CFs or nursing homes, which cost the
7 taxpayer two to three times more, but instead, making an
8 180-degree paradigm shift for everyone to a less-costly,
9 high-quality system, where our model supports families with
10 their loved ones at home. If we support families as caregivers
11 across the life course, billions can be saved. Concrete
12 experiences and analysis has shown this is and should be the
13 way to go forward. The national organization such as the
14 National Association of State Directors of Developmental
15 Services and the American Association of Retired Persons all
16 say the same. It is the only way to go to stem the tide of
17 rising costs in tight economical times.
18 Let us consider right siding the system by taking
19 some of the following multi-tier approaches. Leverage more
20 federal funding through home and community-based funding for
21 services so that we can adequately address the Waiting List.
22 Lower costs by utilizing family caregivers, building upon their
23 strengths and resources through home and community-based waiver
24 funds to support people at home for as long as they are able.
25 It's the cheapest way to go, commit to building a strong
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 66
1 infrastructure to support our ID system, streamline the process
2 of entering and navigating the system, place a moratorium on
3 any further admissions of people with intellectual disabilities
4 and autism to state centers and nursing homes. And to this I
5 plead you to do, especially from Vision for Equality. Continue
6 to downsize the present number living in state centers and
7 leave those who want to go, go. Many still want to leave those
8 centers, and they're not able to leave. Take the necessary
9 steps to increase the rates appropriately, especially for
10 providers who are willing to support those with compelling
11 needs. See that sufficient funds are allocated yearly to this
12 most fragile system.
13 Again, thanks for this unprecedented, wonderful
14 opportunity you're giving again this year to all these families
15 to speak from their hearts. I hope their stories linger for
16 you and help you make the right decisions as you move forward
17 in your deliberations with the administration in another tough
18 year.
19 MS. DEVANEY: Good morning. Thank you for giving us
20 the opportunity to speak today. I have a message today just
21 about one issue that we've been hearing about recently and we
22 wanted to talk to you about. So it's kind of a little off the
23 track of what you've been hearing earlier.
24 The pending implementation of managed care in
25 Pennsylvania for services for people with intellectual
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 67
1 disabilities, autism, and those with physical disabilities, has
2 been in the development for the past few years. We understand
3 that Pennsylvania has already been looking into contracting
4 with managed care entities and may be doing so already.
5 While managed care is a new trend in serving people
6 with disabilities across the country, the current fear is that
7 people with disabilities and families are not being included in
8 the development of the process for this type of service. There
9 are literally hundreds of questions we have, a lot of rumors,
10 and a lot of fear about how managed care could impact
11 negatively on the services our sons and daughters presently
12 receive and how services will be delivered in the future.
13 There is a multitude of data and information
14 available about managed care, on how it works, what the
15 barriers are, how it works well, and how it does not work well
16 for people. As the state proceeds to implement this new type
17 of system, we would like to recommend that we first study the
18 impact it has had on other states' disability systems and the
19 people in their care and also assure, as Pennsylvania moves
20 forward, that we develop a system that is person-centered,
21 person-directed, and provide services of the utmost highest
22 quality, with true outcomes which ultimately meet the needs of
23 people we support.
24 We ask you, is managed care the solution? Is this
25 what the Department of Public Welfare plans to do? Is this the
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 68
1 right approach for Pennsylvania to take? We encourage the
2 state and the Pennsylvania Department of Public Welfare, the
3 Office of Developmental Programs, and the House of
4 Representatives' Human Services Committee to keep in mind that
5 if we are changing the way we do business in Pennsylvania and
6 moving toward a system of managed care or other type of
7 supports, that stakeholders must be told and they must be at
8 the table, and their supporters and families must be there,
9 too.
10 We ask you to assist us to protect our sons' and
11 daughters' lifeline. And please do not forget about families,
12 as we are the mainstay of the system, supporting our sons and
13 daughters at home lovingly and willingly. We, therefore,
14 respectfully ask that the Pennsylvania House of
15 Representatives' Human Services Committee convene a task force,
16 with all stakeholders involved, to discuss this most important
17 issue. We ask that your committee investigate how far along
18 Pennsylvania is in the development of a managed care process.
19 And we also also that we study this issue, review current
20 findings, and bring in national experts, along with families
21 and people with disabilities, to be involved with the design
22 and implementation of any managed care entity or systems
23 reform.
24 Vision for Equality, the Pennsylvania Waiting List
25 Campaign, The Arc of Pennsylvania, and other advocacy
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 69
1 organizations and self-advocacy organizations offer you our
2 support in working with you on this initiative. Our fear is
3 that a plan is being developed that will negatively impact
4 services for people and their families. Any new system being
5 developed should include all parties, and I keep repeating
6 that, and address quality in people's lives, in the community,
7 and person-centered approaches to services. These are of the
8 utmost importance.
9 We ask that if managed care is being considered as a
10 tool to help manage cost, how does the Department of Public
11 Welfare plan on reforming or changing our system? Here are our
12 recommendations. All stakeholders, especially people with
13 disabilities and families, need to be at the table from the
14 beginning at all levels of discussion development and decision
15 making. We recommend that we first study the impact that
16 managed care has had on other states and their disability
17 systems. The language in the contract with managed care
18 organizations is the critical piece. Stakeholders must be
19 there to ensure that the values and outcomes we treasure are
20 included. The system must provide for the needs of the entire
21 community, and we say no Waiting List. Services must be
22 flexible, person-centered and of the highest quality, and
23 provide real choice for people. We must measure the outcomes
24 for people and provide incentives for providers who perform
25 well. Support coordination must be conflict-of-interest free.
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 70
1 And this is not happening all over the state. We must separate
2 housing from services and address the need for affordable,
3 assessable housing in the community. We must provide for the
4 opportunity for participants to direct and manage their own
5 services with individual budgets. We need to incorporate
6 quality measures that are meaningful to people. And
7 beneficiary protections must be designed, including an appeals
8 process. Thank you for hearing this today, and thank you for
9 your consideration.
10 CHAIRMAN DIGIROLAMO: Okay. Thank you, all three of
11 you, again for being here and for your testimony. And our last
12 testifier is Jim McFalls from KenCrest. Jim, always good to
13 see you. And I would also like to recognize someone that's
14 here today, a good friend of mine, someone I work very closely
15 with, Morgan Plant, who represents the community providers who
16 --- and the community providers represent over 200 providers
17 across the State of Pennsylvania, over 50,000 employees. And
18 they provide many of the services that you heard that some of
19 the families receive today. So Jim, you're part of that group.
20 And again, welcome. And you can begin whenever you'd like.
21 MR. MCFALLS: Thank you. Good morning, Chairman
22 DiGirolamo, Representative Murt, and members of the House Human
23 Services Committee. My name is Jim McFalls, and I am the
24 Executive Director of KenCrest Services. This coming June 5th
25 KenCrest will be celebrating our 108th year of services to
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 71
1 people with disabilities.
2 Today we serve nearly 8,000 children, youth and
3 adults in nearly 400 locations, primarily in southeastern
4 Pennsylvania, but also in the states of Delaware and
5 Connecticut. Our 2,000 staff provide early intervention and
6 preschool services, employment services, group home and ICF
7 services, residential care, life sharing, home-based supports
8 and clinical consultation.
9 KenCrest has always supported the Waiting List from
10 both a philosophical standpoint as well as a practical one, as
11 this is the primary source of referrals for the services we
12 provide. Over the years we have helped to develop services
13 beyond the typical group homes and ICFID in response to the
14 needs of individuals and families in the community who needed
15 supports but couldn't or didn't need residential treatment.
16 Such supports and services as life sharing, home-based waiver
17 supports, community employment opportunities and clinical
18 supports such as counseling and behavior intervention were
19 developed to help maintain people with disabilities in the
20 community. We believe there should not even be a Waiting List.
21 People with intellectual disabilities who need supports ---
22 supports and services now, not six months or six years from
23 now. It is shortsighted to not provide services now that would
24 minimize or eliminate the need for more expensive services
25 later.
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 72
1 We were happy to see in the Governor's proposed
2 budget a significant number of dollars committed to the Waiting
3 List Initiative. However, for those dollars to be used
4 effectively, there need to be changes in the current rate
5 structure and regulations for the services people need. The
6 very services that many people on the Waiting List are asking
7 for, such as community employment, home-based supports, and
8 life sharing, have rates attached to them that make it very
9 difficult or impossible to provide.
10 Think of an automobile with an engine that has fuel
11 injectors that are clogged. You can provide a generous supply
12 of gasoline to the automobile, but it won't be able to be used
13 properly. People see the gasoline going in and say, why won't
14 the car go? The answer is that the mechanism that uses the
15 gasoline is malfunctioning. Likewise, money is committed to
16 address the Waiting List, but the rates and regulations to use
17 that money are faulty. More and more agencies are deciding to
18 not even provide these services because every hour of service
19 delivery adds to their budget deficit.
20 Agencies like KenCrest desperately want to provide
21 the services that people on the Waiting List deserve. That is
22 our mission. But we continue to lose money when we provide
23 those services. Although we are seen as human service
24 agencies, we are also bona fide businesses that operate under
25 rules and regulations that require intensive oversight from
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 73
1 regulatory bodies, credit licensing and banking relationships
2 and covenants and inspections and audits. We have mortgages,
3 lines of credit, licensing and all the requirements that any
4 business has to conform to, and at the same time, provide the
5 people we serve and their families with personalized service
6 that doesn't always fit with the traditional business model.
7 The current rate structure and regulations do not
8 reflect the cost and complexity of what it takes to provide
9 quality services in today's world. It is this stressed and
10 dysfunctional system that those on the Waiting List who get
11 approved for services will be entering.
12 To sum up, it is not just the commitment of dollars
13 to the system that is important. Serving the Waiting List
14 requires a system that will efficiently and effectively
15 translate those dollars into services. The process of applying
16 for and connecting to services must be streamlined so that the
17 families get the help they need, when they need it, and not
18 months or years later, when the family has been torn apart by
19 an ongoing crisis. KenCrest and other agencies remain ready,
20 willing and able to help if the rates and regulations allow us
21 to do so. Again, thank you for your time today.
22 CHAIRMAN DIGIROLAMO: Okay, Jim. Thank you. We're
23 almost at the hour off 11 o'clock. And I know there's a press
24 conference after this, right, Sheila, right at 11:00, in the
25 Media Center? Anybody that wants to attend that, I would
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 74
1 encourage them to do so.
2 What I thought I might do in lieu of questions,
3 because we don't have a lot of time, is maybe just give any of
4 the members that would like to make a brief comment on what
5 they've heard today, give them the opportunity to do that, and
6 maybe start with Representative Tom Murt. And maybe at the end
7 --- Fred, I really appreciate you staying. And maybe at the
8 end, when we're done, if you would just come up. Maybe if you
9 just want to make a brief statement on what we've heard today.
10 And again, we've heard, you know, from one end to the other
11 that Pennsylvania is on the cutting edge in providing services,
12 we do a really good job, thank you for the additional money for
13 the Waiting List, but we've also heard a lot from the families
14 and some of the groups about the challenges and struggles that
15 they face, also. So Tom?
16 REPRESENTATIVE MURT: This has been a great hearing,
17 Mr. Chairman. Thank you to all of our testifiers, especially
18 to the families that took the time to be here today.
19 I wanted to request, Mr. Chairman, that perhaps Liz
20 or Melanie Brown glean through some of the testimony. We've
21 heard some really good and many, many recommendations. And I
22 was hoping that we might be able to prioritize which
23 recommendations might be best addressed legislatively and which
24 ones might be addressed administratively, and so we can go
25 ahead and either prepare legislation or move ahead in that ---
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 75
1 in that mode. So that would be a request, Mr. Chairman.
2 CHAIRMAN DIGIROLAMO: Thank you, Representative
3 Murt. Representative Dean?
4 REPRESENTATIVE DEAN: I just wanted to say thank
5 you, Mr. Chairman, for putting together this hearing and thank
6 you to all the folks who came out to testify and told us really
7 important stories. From that video, for example, it shouldn't
8 take a personal meeting with the Governor and a letter to the
9 Governor to get that kind of help, but I'm glad it took place.
10 And all of your stories, those same kind of highlights. Of
11 course, you represent thousands and thousands of other families
12 who have the same needs. So as a member of this committee, I'm
13 delighted that you put this together. It's superb. And, of
14 course, it's information we'll carry with us as we head into
15 budget season and make the arguments for the right kind of
16 spending, the right kind of collecting of revenues, and the
17 right kind of spending of revenues, to really reveal the right
18 priorities for Pennsylvania. So thank you to all of you.
19 Thanks, Mr. Chairman.
20 REPRESENTATIVE DELISSIO: Thank you. I just --- I
21 appreciate hearing everything. There's two comments, very
22 quickly. It appears that these systems are very rigid versus
23 flexible. When I reflect on my own individual life, you know,
24 stuff happens that is beyond my control sometimes every hour of
25 every day. Your lives are no different. So the rigidity of
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 76
1 the system does nothing to support that. So I would strongly
2 encourage the Department, strongly encourage the Department,
3 that if flexibility doesn't start to get built into these
4 systems, we're going to be back here holding these same
5 hearings time and time again. So that's a very strong comment
6 I'm making. And to echo Representative Dean's comment, when
7 constituents come to us because the bureaucracy is, as I put
8 it, stuck on stupid, meaning they cannot get done what needs to
9 be done to have their needs met, and that's an obligation of
10 state government, that's not a process that works. And again,
11 we have to take a hard look at that process. I am glad for
12 Mrs. Lewis' success. But if that's the process that needs to
13 happen, the Governor's going to be a very, very, very busy man
14 with a very heavy schedule over the next couple years.
15 UNIDENTIFIED SPEAKER: Thank you, Mr. Chairman. I
16 know we're very short on time. So the price you're going to
17 pay for this is I'm going to have to come back to these issues
18 later. I have two adult sons with autism. And I have about 11
19 points to make, but I'll restrict myself to one or two. I've
20 been in this --- wrestling with this system for 20 years, and
21 I'm an attorney, and I don't understand it. Okay. Part of the
22 reason for that is it's a moving target. It gets reorganized
23 every couple of years.
24 I have a --- my older son had a psychiatric
25 hospitalization last year because he wasn't getting services.
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 77
1 And I can assure you that the two weeks he was in psychiatric
2 hospitalization the Commonwealth spent more money than it would
3 have spent in years of the services we're looking for. And I'm
4 sure some of the folks out there in the audience could tell a
5 similar story. I can tell you I'm not even the only member of
6 the House of Representatives who's had that experience.
7 My younger son had --- was in transition to a
8 program, and our school district was wonderful. They spent
9 years transitioning him to the program. And when he aged out
10 of the school system, the program wasn't there anymore. So
11 we're waiting for the program. And meanwhile, the --- our
12 school district and the taxpayer money my school district
13 invested in that transition hasn't accomplished anything.
14 We hear about waste in the area of human services,
15 and there is waste. But the waste isn't people getting
16 services they don't deserve. The waste is this penny wise,
17 pound foolish approach, that we'll save a few cents today even
18 if it means a hospitalization tomorrow, or we'll --- we'll save
19 some money in our budget item and let some other budget line
20 pay ten times as much money. That's the waste that we need to
21 address. Thank you, Mr. Chairman.
22 CHAIRMAN DIGIROLAMO: I did not --- did not know
23 that you had two children with autism, and you're on the right
24 committee.
25 With that, Fred, do you want to please come up. And
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 78
1 I don't want to put you on the spot. Just --- you know, just
2 comment a few comments on what you've heard this morning. I
3 think it would be really helpful for the committee and for the
4 people that are here and testified.
5 MR. LOKUTA: Thank you. And I appreciate the
6 opportunity to make a few comments. And I know we're running
7 short on time. The stories that we heard today unfortunately
8 are not unique. I have been around the state in my five months
9 as Deputy Secretary, and I've heard very similar stories and
10 have found that there are commonalities and systems issues that
11 need to be addressed.
12 As part of our futures planning, for the future,
13 we're trying to create a system. And in fact, one of the goals
14 and objectives that we have been identified --- that we have
15 identified includes an opportunity to create a system that
16 offers seamless transition throughout a lifespan. Because,
17 right now, it's very difficult for families and self-advocates
18 to navigate our system. It's very complex, it's very
19 complicated, and it is difficult to understand. I've been in
20 the system for 28 years, and I have difficulty understanding
21 it. So fortunately, we have a dedicated, passionate group of
22 people, people like you heard today, who are willing to help us
23 and walk the walk with us so that we can create a system that
24 will change lives. And I look forward to working with the
25 committee and with these dedicates groups of stakeholders to
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 79
1 help us to that end.
2 CHAIRMAN DIGIROLAMO: Okay. Thank you very much. I
3 heard the recommendation of possibly maybe putting together a
4 small task force from the committee that might be able to work
5 along with the Department to maybe address some of the
6 concerns. So we might be looking into that. That would be
7 okay, of putting together a small group of members here on the
8 committee. And I know --- I know one person who's going to be
9 on that task force. Right there (indicating). You might be
10 chairman. But we'll be in touch with you with that.
11 MR. LOKUTA: I appreciate it.
12 CHAIRMAN DIGIROLAMO: But again, thank you very much
13 for being here. And again, it's a pleasure meeting you.
14 MR. LOKUTA: Same here.
15 CHAIRMAN DIGIROLAMO: We got a lot of work to do.
16 We've come a long way. As we heard, Pennsylvania's, you know,
17 pretty good, but we still got a lot of work to do.
18 MR. LOKUTA: But we can get there if we work
19 together and --- and put our --- our decisions focused on
20 people and families.
21 CHAIRMAN DIGIROLAMO: All right. And again, thank
22 you all. It was great to hear all your stories. And God bless
23 you. And keep up the good work that you're doing each and
24 every day. We're behind you, believe me.
25 MR. LOKUTA: Thank you very much.
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 80
1 THE HEARING CONCLUDED AT 11:10 A.M.
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
25
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 81
1 CERTIFICATE
2
3 It is hereby certified that the foregoing proceedings are a
4 true and accurate transcription produced from audio on the
5 said proceedings and that this is a correct transcript of
6 the same.
7
8 Sargent's Court Reporting Service, Inc.
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
25
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908