COMMONWEALTH OF PENNSYLVANIA HOUSE OF REPRESENTATIVES
HUMAN SERVICES COMMITTEE PUBLIC HEARING
STATE CAPITOL HARRISBURG, PA
EAST WING ROOM 60
MONDAY, NOVEMBER 18, 2 013 11:00 A.M.
PRESENTATION ON INTELLECTUAL DISABILITIES WAITING LIST
BEFORE: HONORABLE GENE DIGIROLAMO, MAJORITY CHAIRMAN HONORABLE MATT BAKER HONORABLE JOSEPH HACKETT HONORABLE DOYLE HEFFLEY HONORABLE TOM MURT HONORABLE BERNIE O ’NEILL HONORABLE BRAD ROAE HONORABLE MICHELLE BROWNLEE HONORABLE PAMELA DELISSIO HONORABLE MADELEINE DEAN HONORABLE PATTY KIM HONORABLE ERIN MOLCHANY HONORABLE MARK PAINTER
Pennsylvania House of Representatives Commonwealth of Pennsylvania 2
ALSO IN ATTENDANCE:
REPRESENTATIVE WILLIAM C. KORTZ, II 3
I N D E X
TESTIFIERS
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NAME PAGE
VIKI TURNER FAMILY MEMBER...... 6
PAMELA NOVAK FAMILY MEMBER...... 10
SHEILA STASKO ASSOCIATE DIRECTOR, VISION FOR EQUALITY, PA WAITING LIST CAMPAIGN...... 12
LISA TESLER POLICY COORDINATOR, PA WAITING LIST CAMPAIGN...... 15
DAVID GATES, ESQUIRE PENNSYLVANIA HEALTH LAW PROJECT...... 23
SUSAN RZUCIDLO EXECUTIVE DIRECTOR, SPEAK UNLIMITED...... 31
JUDY BANKS ACTING DIRECTOR, DISABILITY RIGHTS NETWORK OF PENNSYLVANIA...... 3 8
DAVID KAUFFMAN EXECUTIVE ASSISTANT, OFFICE OF DEVELOPMENTAL PROGRAMS...... 44
AUDREY COCCIA CO-EXECUTIVE DIRECTOR, VISION FOR EQUALITY...... 49
MAUREEN DEVANEY CO-EXECUTIVE DIRECTOR, VISION FOR EQUALITY...... 57
SUBMITTED WRITTEN TESTIMONY
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(See submitted written testimony and handouts online.) 1 4
1 P R O C E E D I N G S
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3 MAJORITY CHAIRMAN DIGIROLAMO: Good to see
4 everybody, and welcome to our beautiful State Capitol. I
5 know some of you have traveled a good distance, and as we
6 always do at the Human Services Committee, I want to ask
7 everyone to stand for the Pledge of Allegiance to the flag.
8
9 (The Pledge of Allegiance was recited.)
10
11 MAJORITY CHAIRMAN DIGIROLAMO: Okay. Good
12 morning. I ’m very excited. We have a very, very important
13 hearing today on the Intellectual Disabilities Waiting
14 List.
15 And just a couple of ground rules before we get
16 started just to remind everyone that the cameras are on so
17 we are being recorded, and more than likely this will
18 appear on PCN, I am not quite sure when today, but we'll
19 probably be on PCN. And because we have a lot of people
20 who are going to testify today, to be fair to everyone,
21 what I'd like to do is allow everybody to testify first.
22 Then at the end of the hearing, if we have time, we will
23 open it up for questions from Members of the Committee.
24 That's the way I would like to do it.
25 And maybe just start off by letting the Members 5
1 who are present just say hello and identify themselves, and
2 I ’ll start with my good friend Matt.
3 REPRESENTATIVE BAKER: Matt Baker, Tioga and
4 Bradford counties. Good morning.
5 REPRESENTATIVE DELISSIO: Good morning. Pam
6 DeLissio representing parts of Montgomery and Philadelphia
7 counties.
8 MAJORITY CHAIRMAN DIGIROLAMO: Good morning. I ’m
9 Gene DiGirolamo from Bucks County, and the Chairman of the
10 Committee.
11 REPRESENTATIVE MURT: Tom Murt, Montgomery County
12 and Philadelphia County.
13 REPRESENTATIVE PAINTER: Good morning. Mark
14 Painter, Montgomery County.
15 REPRESENTATIVE MOLCHANY: Erin Molchany,
16 Allegheny County.
17 REPRESENTATIVE DEAN: Good morning, everybody,
18 Madeleine Dean, Montgomery County.
19 REPRESENTATIVE KIM: Patty Kim, Dauphin County.
20 MAJORITY CHAIRMAN DIGIROLAMO: Okay. And with
21 that, I would like to turn the hearing over to
22 Representative Tom Murt, who’s the Subcommittee chairman on
23 the issue, and also had requested that we do this hearing,
24 so Tom, I ’m going to turn it over to you.
25 REPRESENTATIVE MURT: Good morning, everyone. 6
1 Thank you for attending our hearing.
2 Before we commence, I just wanted to mention that
3 today's hearing is part of our ongoing discussion regarding
4 these issues relating to the care of our family members and
5 Pennsylvanians with various types of disabilities. We have
6 made great, great progress in the last couple years, and we
7 are going to continue on with this effort, and I just want
8 to express my gratitude to all the advocates from the
9 various agencies who have been so diligent and faithful and
10 steadfast to this mission.
11 So w e ’d like to call forth our first testifiers.
12 Mr. and Mrs. Fred Turner, family members; Pam Novak, a
13 family member; Sheila Stasko, the Associate Director of
14 Vision for Equality and the Pennsylvania Waiting List
15 Campaign; and Lisa Tesler, the Policy Coordinator for the
16 Pennsylvania Waiting List.
17 First of all, again, welcome, and thank you very
18 much for taking the time to be with us this morning. Mr.
19 and Mrs. Turner, do you want to go first?
20 MRS. TURNER: Well, it’s only Mrs. Turner.
21 REPRESENTATIVE MURT: Mrs. Turner. Okay.
22 MRS. TURNER: No Mr. Turner. Mr. Turner doesn’t
23 travel.
24 My name is actually Viki Turner, and my husband
25 and I live in West Chester, and I notice they don’t have 7
1 any representatives from Chester County on this Committee,
2 which is too bad.
3 I ’m here to talk about my daughter Caroline, who
4 has a diagnosis of Prader-Willi syndrome along with
5 intellectual disabilities. She now resides in Troy,
6 Pennsylvania, at a private intermediate-care facility
7 called Martha Lloyd Community Services. She was 26 years
8 old when we placed here there. She’s now 45.
9 She had a job when she came out of high school.
10 She had a job in a dry cleaner but subsequently lost the
11 job. We were unable to find any kind of employment for
12 her. Chester County, it is very hard to find places, and
13 also there’s no transportation there to get them there.
14 Anyway, her being at home was very difficult for
15 her and for us, so when Martha Lloyd had an opening, we
16 were very happy to have her there. Now, Martha Lloyd is
17 210 miles away from our home, so when we placed her there,
18 we had several families that we carpooled with because
19 there were several other ladies up there who had parents
20 that lived in the West Chester area, so that was very nice,
21 and we took turns driving back and forth. However, we no
22 longer have those families. Their parents have
23 subsequently either died or been put into a nursing home or
24 whatever. So it’s pretty much up to me when we want to see
25 Caroline or bring Caroline home. It is a long drive, eight 8
1 hours back and forth to get Caroline, so we do not visit
2 very often. We bring her home for holidays. She’ll be
3 coming home for Thanksgiving. We bring her home for
4 Christmas. I go up there for Family Day, et cetera, but we
5 can’t go visit her on the weekend. It’s ridiculous.
6 So I can’t fault Martha Lloyd. They’ve been good
7 for Caroline, but it’s not the best place for her. She is
8 pretty able but her diagnosis makes it that she needs
9 supervision. The ICF where she’s been living for the last
10 almost 20 years, I guess, really is not a suitable place
11 for her. She has an IQ of about 70, which doesn’t sound
12 like much but it’s fairly high. There are very few peers
13 in the ICF for her even to talk to. She’s in a bedroom
14 with two other ladies, so it’s crowded, and she doesn’t
15 have much room for her own space. We had hoped that she
16 would get waiver funding. Martha Lloyd had talked a while
17 ago about maybe getting waiver funding for her and moving
18 her into one of their other homes, but that hasn’t
19 happened.
20 So we have her up there, and as she gets older,
21 she’s becoming much more anxious to get closer to home.
22 She worries about us, particularly her father, who is not
23 particularly healthy. She’s going to be left up there,
24 that w e ’ll be gone, and nobody will come to rescue her, I
25 guess, is really what she feels like. 9
1 I think the best situation for her would be in a
2 Prader-Willi group home. There are several of those in
3 Elwyn that Elwyn runs in our area, which may be 15 or 20
4 minutes from our home. There’s also another Prader-Willi
5 group home in Willow Street in Lancaster County, which
6 actually a group of parents with children with Prader-Willi
7 syndrome lobbied for a number of years ago. That would be
8 an ideal situation too.
9 Caroline would not survive well or do well in
10 just a plain old group home. She needs specific
11 supervision because of her food-seeking, not abilities,
12 although she would be a great cat burglar, but she will
13 seek out food, and she’s been known to take other things as
14 well. So she needs a certain amount of supervision, close
15 supervision, and yet she’s very sociable and she would like
16 to be able to do things in the community. So w e ’re kind of
17 in a bind.
18 I’m getting older, needless to say, and that
19 eight-hour drive is tough. I fell asleep one time coming
20 home from there and crashed my car, so fortunately didn’t
21 crash myself.
22 So hopefully we can find a place that would be
23 meeting her needs and would be a lot closer to our home.
24 So that’s my story.
25 REPRESENTATIVE MURT: Thank you, Mrs. Turner. 10
1 Our next testifier is Pam Novak. Good morning,
2 Pam.
3 MS. NOVAK: Good morning. Hello and good day to
4 everyone.
5 My name is Pamela Novak and I ’m here today to
6 talk about my son, Jeffrey J. Novak, and I actually brought
7 him here today. It’s the handsome young man there. Of
8 course, I ’m a little biased.
9 He is 16 years old. He is diagnosed with an
10 intellectual disability, pervasive developmental delay,
11 autism and epilepsy. Jeffrey currently does not speak but
12 he is learning to use an iPad for communication. He
13 attends Pittsburgh public schools’ Pioneer Education Center
14 with students with multiple disabilities. He is in a life
15 skills program and receives physical, occupational and
16 speech therapies. Jeffrey has no safety perception or
17 stranger awareness. He cannot take care of his personal
18 needs independently. He has choking hazards and needs
19 constant supervision. He takes seizure meds three times a
20 day, and we are here today because I am a single divorced
21 mother. I am the primary custodial parent, and I have been
22 trying to apply for home health aide services for my son
23 while I work.
24 Jeffrey currently is on the emergency list for
25 intellectual disability services but there are hundreds of 11
1 people in Allegheny County on this list. I have also been
2 denied this service through the insurance company four
3 times. Each time I have provided all the documentation
4 including the letters from Jeffrey’s physicians that the
5 insurance company has asked for, and we continue to be
6 denied. There are responses that a regular, unskilled
7 babysitter can care for Jeffrey.
8 I as a parent am trying to do my best to maintain
9 stable employment but I cannot do it without some help. I
10 need trained people to take care of Jeffrey so that I can
11 work. I have had to leave jobs due to a lack of childcare.
12 I have also had to incur very expensive childcare costs
13 through agencies whose fees have been $21 to $22 an hour,
14 and I made $10 an hour. I want to pursue a degree in
15 nursing by going back to school in January 2014. I want to
16 provide a better future for myself and my son.
17 I fear the worst for Jeffrey’s future and others
18 with disabilities who are facing these kinds of
19 circumstances. Please listen to my words today. I ’m
20 speaking today on behalf of my family and others, and
21 please support the funding for the waiting list for people
22 with intellectual disabilities.
23 Thank you.
24 REPRESENTATIVE MURT: Thank you, Pam.
25 MS. NOVAK: Thank you. 12
1 REPRESENTATIVE MURT: Our next testifier is
2 Sheila Stasko. Good morning, Sheila.
3 MS. STASKO: Good morning, Representatives
4 DiGirolamo and Representative Murt. I’m very honored to be
5 able to address this issue of waiting lists for people in
6 the Commonwealth today.
7 Twelve hundred people with intellectual
8 disabilities were able to assume a regular life, and as a
9 family member, I can tell you that we ask for nothing more.
10 You made it happen by appropriating State funding, and we
11 thank you, and I ’m sure you’re all aware of the fact that
12 there are 15,000 people still waiting for services and
13 supports.
14 One of the major issues we pointed out was the
15 fact that there is no active waiting list plan, how many
16 people will be taken off the waiting list by when, and what
17 needs to happen. By July, the Office of Developmental
18 Programs had worked with the PA Waiting List Campaign, and
19 together we had developed a State waiting list plan.
20 Despite a multitude of promises, there’s still no waiting
21 list plan approved nor in place.
22 Seven hundred students graduate each year with
23 intellectual disabilities. We hear from families that they
24 don’t know of any system existing. They don’t know how to
25 access that system. If funding for graduates is available, 13
1 the fix is very simple. The Department of Education needs
2 to step up. They should be required to provide students
3 with disabilities a set curriculum and work directly with
4 supports coordinators and families so that the individual
5 transition plan and the individual support plan contains
6 all the necessary information and paperwork for a smooth
7 transition into the adult world. It’s not enough to tell a
8 young person who just graduated that here is your paper,
9 and they are not hooked up or linked up with any services
10 or supports.
11 We support the move to an employment-first State.
12 However, we worry what will happen to those who, for
13 various reasons, cannot or will not work. We cannot toss
14 aside a system that has been established. What will people
15 do if they don’t fit into this new system?
16 We support the one-to-one person ratio, if
17 needed, for people in order to have real lives in their
18 community or to get real jobs. We have people who will
19 always need more individual support, and we cannot allow a
20 new program to hurt people.
21 We also have grave concerns for the over 800
22 elderly caregivers who continue to provide care even though
23 many of them need that care themselves. A coordinated plan
24 between ODP and Aging needs to be established to provide
25 the necessary evaluation and supports required to help our 14
1 families together age in place, to provide the necessary
2 evaluations and supports required with the least bit of
3 disruptions.
4 There also needs to be creative options for in
5 home living and habilitation for those folks who can stay
6 in their own homes with a minimal amount of support. The
7 system needs to develop a kinder and gentler way of helping
8 aged parents plan for their sons' and daughters' eventual
9 move to residential.
10 The Pennsylvania Waiting List Campaign is a very
11 organized, educated parent- and self-advocate-driven group
12 of people who live throughout the State. The Office of
13 Developmental Programs initiated a Futures Planning Group
14 for the State. We were all rejected as family participants
15 despite repeated attempts to participate. We have
16 attempted to participate in the Medical Advisory Committee
17 and the Managed Care Committee being formed.
18 All these organizations are in a constant state
19 of change, and the changes that they bring directly impact
20 our families and the people that we love. We respectfully
21 request that we be allowed admission to these groups and
22 have a stronger role in implementation of planning and have
23 a voice in what directly impacts our lives. Families have
24 been left by the wayside.
25 And now I'm going to say something that's not on 15
1 your papers. We have been hearing lately that ODP is
2 saying that families are afraid of change and we're
3 resistant and new change is going to happen in January.
4 And I'm here to state that change has been a constant thing
5 in our lives over the last eight years. We have had
6 nothing but change. We're not afraid of change. We're
7 sick of change, and what we want is stability in this
8 system because it keeps changing all the time.
9 So having said that, I need to look at all of you
10 and I need to tell you that we are profoundly grateful for
11 the support that you have given to families. Twelve
12 hundred people have come off that waiting list this year
13 and have had and are making a regular life, and together,
14 with your help, we can make life better for at least 4,000
15 people on the emergency waiting list.
16 Thank you.
17 REPRESENTATIVE MURT: Thank you, Sheila.
18 Our next testifier is Lisa Tesler, the Policy
19 Coordinator for the Pennsylvania Waiting List Campaign.
20 Good morning, Lisa.
21 MS. TESLER: Good morning. Good morning,
22 Chairman DiGirolamo, Representative Murt and other Members
23 of the Committee. My name is Lisa Tesler, and I'm the
24 Policy Coordinator for the Pennsylvania Waiting List
25 Campaign. Thank you for the opportunity to provide 16
1 testimony about the intellectual disabilities system and
2 the waiting list for services.
3 Back in May, I testified about the status of
4 fiscal year ’12/’13 waiting list funding and identified
5 some specific problems related to the implementation of the
6 initiative. I am happy to report that this year, the
7 Office of Developmental Programs was much quicker with
8 getting waiver capacity out to the county programs. We
9 want to thank ODP for responding to our recommendations to
10 speed up the process.
11 So I want to give you an update. The status of
12 last year’s waiting list enrollment as of October 2013 is
13 as follows: the Aging Caregiver capacity of 430 people.
14 They have enrolled 369. That means 14 percent of those
15 folks are still waiting. In the High School Graduate
16 capacity, of the 700 that were funded, 548 have enrolled.
17 That means 22 percent of those folks are still waiting.
18 So now for this year, fiscal year ’13/’14, the
19 Emergency Consolidated Allocation was 380 folks. They have
20 enrolled 175, which is 46 percent of the people are now on
21 waivers. And for the High School Graduates, they’ve
22 enrolled 196, which is 28 percent of the people. So as a
23 point of reference, last year the capacity letters hadn’t
24 even gone out to the counties as of October, so w e ’re happy
25 that the capacity has gone out and people are beginning to 17
1 enroll into the process. This has been an improvement for
2 this year.
3 That being said, we did make some recommendations
4 last spring that have not yet taken shape. We recommended
5 that all individuals in the emergency category have a
6 comprehensive, person-centered, individual support plan
7 developed and in place. Having a good plan ready to roll
8 will help streamline the process. Once waiver capacity is
9 offered to the families, they just need to update the plan,
10 choose their providers and get going through the process.
11 We also recommended that ISP development begin
12 while the students are still in school. This could include
13 the teachers and other folks in the school system that know
14 the student well and can help inform the planning process
15 and then at graduate again streamlining the process for
16 enrollment into waiver programs.
17 We also had recommended that the Office of
18 Developmental Programs reconsider the use of the Supports
19 Intensity Scale Assessment. The feedback we get from the
20 field indicates that this assessment was holding up the
21 enrollment for families last year. So far, it appears that
22 the system is more responsive with scheduling for new
23 waiver enrollees this year. However, we still have serious
24 concerns. Families do not believe that the tool accurately
25 reflects their needs. The vendor, w e ’re still hearing, is 18
1 not very flexible with the scheduling of the assessment,
2 and finally, the information collected through the
3 assessment is not having any impact on the outcomes or
4 services for families. Now ODP is proposing to use an
5 assessment to tie directly to an individual budget. So we
6 have concerns about that because up to this point, that
7 assessment tool has not proven to be useful for any
8 planning purposes in Pennsylvania. We believe that tying
9 budgets directly to an assessment without the benefit of
10 the planning process will harm individuals.
11 Overall, we need to streamline the system so that
12 it’s easier on families and people getting services. The
13 processes are overwhelming everyone from the county to the
14 support coordinators to the providers and, most
15 importantly, to the families. Emphasis on process and
16 procedures are crowding out the focus on people and
17 families.
18 Some other information I ’ve recently learned: Of
19 last year’s Waiting List Initiative with the Consolidated
20 Aging Caregiver, only 25 percent of those folks have
21 residential services in their plan while 51 percent have
22 unlicensed home- and community-based habilitation, and this
23 year, only 11 percent of the people in the Emergency
24 Waiting List Initiative have residential services in their
25 plan while 68 percent have the unlicensed home- and 19
1 community-based habilitation. This tells us that people
2 are choosing to live in their own private homes and staying
3 with their families. So we need to really assure that we
4 have a robust, in-home family support service so that these
5 families can keep their loved ones at home successfully.
6 Those families save a significant amount of money for the
7 system over their lifetime.
8 In the second half of my testimony, I ’m going to
9 switch gears and talk a little bit about the ODP Futures
10 Plan. The ODP’s futures planning process is proposing
11 broad and bold changes to the system that supports
12 individuals and families in the community. However, there
13 is no effort to close State centers in the plan. State
14 centers are outdated, expensive and a very restrictive
15 institutional approach to services. The population at the
16 centers are aging. We appreciate that there are fewer
17 people going into centers this year compared to the
18 previous two years. However, we believe that all
19 admissions should be halted. We believe that a future plan
20 must address the shrinking population and the eventual
21 closing of all the centers. ODP decided that they would
22 ignore the problem and pursue reforms only in the community
23 settings. While people in the community are being asked to
24 wait for years for services and suffer the consequences of
25 new policy, the individuals in the State centers are carved 20
1 out of any change. Change is challenging for all of us but
2 it seems that ODP will be plowing forward with very
3 dramatic changes to the waiver programs without planning
4 any changes to the institutional component of the system.
5 The community waiver programs have already
6 undergone significant changes in service definitions,
7 billing practice and regulations over the past eight years.
8 The changes in services, rates and payments have resulted
9 in consequences to the people served. People living with
10 their families are held to very strict rules and are losing
11 services. The ideals of everyday lives, self-determination
12 and person-centered planning have been lost to process and
13 restrictions. There are fewer providers willing to serve
14 the people that need a high level of care. People with
15 behavioral and medical needs are being discharged by their
16 providers. People are being forced into institutional
17 settings.
18 We would like to propose that before any
19 individual ends up in an institution of any kind that there
20 be a formal review process in place. People are going into
21 these private, intermediate-care facilities because the
22 community providers are unwilling or unable to serve them.
23 We would like a process where the Department of Public
24 Welfare, the Governor’s Office and the State legislators
25 are tasked with examining why is the community system 21
1 failing these people before they end up in restrictive,
2 segregated, inappropriate placements.
3 The community waiver system is still trying to
4 right itself from the last rounds of reform, and ODP is
5 considering embarking on new models of service and funding.
6 The risk to people and their families is unknown and
7 unsettling.
8 Last week, during a meeting with the Intellectual
9 Disability Caucus, Deputy Secretary Fred Lokuta referred to
10 the Consolidated Waiver as a golden cow that some families
11 were taking advantage of to receive $400,000 to $600,000 of
12 services a year. He stated that families were grabbing
13 everything they could get. We feel this is an unfair
14 characterization of people served in the community system.
15 The average authorized budget for a person enrolled in the
16 Consolidated Waiver through this year's Emergency Waiting
17 List funding is $46,000 a person. That's 38 percent less
18 than last year's '12/'13 Aging Caregiver Initiative. Last
19 year's Elderly Caregiver Initiative resulted in an average
20 budget of $73,000 a person. The average cost of all
21 individuals in the Consolidated Waiver is $106,000,
22 according to the Governor's budget from last year.
23 So while we understand that some people with a
24 higher level of need will cost more to serve, we wanted to
25 contradict the impression that families are routinely 22
1 receiving extremely expensive waiver services.
2 We understand ODP experienced costs significantly
3 above budget last year. We need accountability and
4 responsibility for that funding. The reforms and changes
5 to the programs over the past several years have not
6 corrected the deficits in the system. We understand the
7 need for reform and improve the system for community
8 supports. We are aware of the cost pressures in the
9 system. However, we still strongly believe that investment
10 of dollars into community programs is necessary and cost-
11 effective to provide services and supports for the 4,000
12 people on the Emergency Waiting List. Taking care of the
13 most vulnerable is a core function of government.
14 In conclusion, people with disabilities and their
15 families serve high-quality services to allow them to live
16 and work in their communities. Fifteen thousand people on
17 waiting lists clearly demonstrates that the existing system
18 is not meeting the needs of the people. We need a futures
19 plan that adequately addresses serving all people who need
20 help while preserving the supports and services for people
21 already receiving waivers. A futures plan should provide
22 for the health and safety of those in the system, address
23 the needs of those on the waiting list, and also plan for
24 the closure of State centers and other large institutional
25 settings. We are not convinced that the current ODP 23
1 Futures Plan and the changes it proposes will adequately
2 tackle these problems.
3 Thank you for the opportunity to testify today.
4 REPRESENTATIVE MURT: Thank you, Lisa. Thank you
5 to all of our testifiers.
6 I just wanted to acknowledge and thank the
7 Members who have joined us: Representative Michelle
8 Brownlee, Representative Brad Roae, Representative Joe
9 Hackett, Representative Bernie O ’Neill, and Representative
10 Bill Kortz. Thank you very much.
11 Our next testifiers are going to discuss some
12 issues related to managed care: Kelly Whitcraft, the
13 Policy Coordinator and the Advocate for Disabilities Rights
14 Network of Pennsylvania, and Mr. David Gates, Esquire, from
15 the Pennsylvania Health Law Project.
16 Good morning, Mr. Gates.
17 MR. GATES: Good morning, Representative Murt.
18 REPRESENTATIVE MURT: Is Kelly...
19 MR. GATES: Yes, unfortunately Kelly Whitcraft is
20 unable to testify today due to an injury, so I ’ll be taking
21 on both roles today.
22 REPRESENTATIVE MURT: Great. Thank you for
23 joining us.
24 MR. GATES: Well, thank you very much.
25 I’d like to start by following up on a couple 24
1 threads from the last panel that I think are important just
2 to mention briefly, and one is that Ms. Novak, who talked
3 about the problems getting home health aide and also
4 connecting with the waiver, and this is a special problem
5 for children with developmental disabilities, and our
6 organization, the Health Law Project, represents numbers of
7 families who are attempting to get home health aides.
8 There is an inherent conflict between trying to
9 get services through the waiver and trying to get home
10 health aides, and it’s especially difficult for those
11 children on the autism spectrum, and I would hope at some
12 point to be able to explain that in some more detail.
13 But the situation you heard from Ms. Novak is by
14 no means unique. It is a serious, systemic problem for
15 families whose children need supports and are getting ping-
16 ponged between the home health system, between the waiver,
17 between the behavioral health system, and as a result, end
18 up with fewer or no services at all, so that is another
19 issue that I hope this Committee might look into at a
20 future date.
21 I would also point out statements made by Sheila
22 Stasko regarding the problem of coordinating transition
23 planning between the education system, the school district,
24 and the ODP system, and I can tell you, as someone who has
25 actually taught in classes for attorneys who specialize in 25
1 special education, while there’s a lot of knowledge about
2 the education component, the school districts and the
3 lawyers involved know very little about waivers, and so
4 there’s a real disconnect when it comes to doing the
5 transition planning, which is mandated under State law at
6 age 14, to figuring out how does this individual, this
7 youth get into a waiver, what services are covered and how
8 do you coordinate, as Lisa mentioned, the plan under
9 special education, which is the IEP, with the plan under
10 the waiver, which is the ISP, and get everybody together
11 and make sure that those services are coordinated and
12 effective, and that’s another piece that really needs to be
13 examined.
14 Let me move on now to the managed-care component
15 here. So let me just say first of all, what I ’m talking
16 about is something kind of unique, and it’s called managed
17 long-term services and supports. Now, most of you are
18 probably familiar with managed care in the context of
19 medical care, you know, the HMOs, that’s a typical managed
20 care. Well, this is something different. The HMOs operate
21 on a medical model.
22 We ’re now talking about combining that into
23 services that are really not medical model services. So
24 there’s a real challenge here in fitting the services that
25 we currently provide under the intellectual-disability 26
1 system with the typical managed care where you have
2 hospitals and doctors and networks of medical
3 professionals. So it creates a real challenge in that
4 regard. There is interest apparently in the House in this.
5 There’s House Resolution 255, which creates a study of the
6 long-term-care system, and House Bill 252, which
7 establishes the Pennsylvania Long-Term Care Council to look
8 at issues including managed care, and there is a real push
9 to see managed care as a means, as sort of a magic bullet
10 to control costs, and w e ’re very concerned that managed
11 care is not the magic bullet, that if its primary purpose
12 is used to reduce costs, there will be some serious
13 consequences to the availability and the quality of
14 services that are provided.
15 So we know that the HMOs in their coalition,
16 called the Coalition of Medical Assistance Managed Care
17 Organizations, have called for an expansion of the role of
18 managed care, but they in fact have specifically carved out
19 or excluded individuals with intellectual and developmental
20 disabilities from their proposal, and we think that’s a
21 wise idea.
22 The Association of County Administrators of
23 Mental Health and Developmental Services has also issued a
24 proposal which would include the intellectual-disability
25 services in managed care but unfortunately, they don’t 27
1 provide any details on how that would be done, and I have
2 to tell you that in such a massive change in the model of
3 providing services, those details are absolutely essential.
4 So we are concerned that the cost savings will
5 not be realized through this managed-care model because you
6 have to understand, in a managed-care model, you’re paying
7 an entity that actually does not provide care but "manages
8 it” so you have these additional administrative costs,
9 which have to be factored in to the cost, so what we don’t
10 want to see a managed-care system that saves costs simply
11 by reducing services. We think that services can be made
12 more efficient, that we look for more consumer control, but
13 we ’re very concerned about simply giving some company a
14 capitated rate and say here’s the dollar amount, you do
15 with it what you will. We’re particularly concerned that
16 this will have grave impact on those individuals who need
17 to have residential services or whose needs are so
18 intensive that they require some expensive services. Those
19 folks will end up in much less expensive but services that
20 do not meet their needs and may end up being
21 institutionalized when over a period of time those needs
22 are unmet.
23 So I will say in terms of a conclusion to Ms.
24 Whitcraft’s testimony, and I ’ll read this part, that
25 because of those concerns, the Disability Rights Network 28
1 strongly recommends that the intellectual-disability system
2 is carved out of any plans to implement managed long-term-
3 care services and supports in the Commonwealth's long-term-
4 care system.
5 Now, in my testimony, which you have here, I'm
6 not going to read this but I think the main point I want to
7 make is that switching over to a managed-care model is very
8 complex and there's a lot of factors to consider. I've
9 included on the last page of mine a number of resources
10 which I would highly recommend be reviewed both by ODP, if
11 they're interested in going to this model, and to the
12 General Assembly if they're interested just so you get a
13 sense of the complexity and all the factors that need to be
14 considered, and I have listed some of those factors that
15 have been set out by the Federal Government, the Centers
16 for Medicare and Medicaid Services on page 4 and 5 of my
17 testimony, so you have a sense of what the feds are saying
18 needs to be considered. There's a lot of factors here.
19 Let me just point out a couple big ones because
20 my organization, the Health Law Project, we have not taken
21 a position for or against managed care but we have a strong
22 position that there are some very important factors that
23 need to be considered. First of all, what is the purpose
24 of having managed care? We're very fearful. If the
25 primary purpose is to drive down costs, that will result in 29
1 reduced quality and reduced access to needed services. So
2 we believe that the primary purpose should be better
3 outcomes for participants. So when you do this, it's
4 called the ISP, this plan, what you do is, you go through
5 certain goals, and from these goals you develop outcomes.
6 In other words, the Commonwealth is going to be spending
7 money. What is it that the Commonwealth is looking for,
8 for its money? What are we buying with that money? That
9 is the outcomes. We believe that any move to managed care
10 for intellectual-disability services must be based on
11 proving we can get better outcomes for our money, not just
12 saving the money but actually producing better outcomes.
13 We think that it's important to also use more
14 consumer control, that people have a bigger voice in what
15 services, how those services are used, mixing and matching,
16 using more generic services, for example, for some people,
17 it may be both more effective and cheaper to pay for a Y
18 membership rather than pay for a licensed physical
19 therapist, who's a lot more expensive. So those are some
20 examples.
21 We also ask that you review -- there is one
22 existing program the Commonwealth operates right now,
23 operated actually by the Office of Developmental Programs,
24 which uses a managed-care model for persons with
25 developmental disabilities, and that's called the ACAP 30
1 program. That’s a program for adults on the autism
2 spectrum. So we already have that program in place.
3 There’s one provider. It’s only in four counties. But
4 it’s been effective for several years now. Before we jump
5 into expanding managed care for persons with intellectual
6 disabilities, let’s have an external review of just how
7 effective that program has been. Has it met the outcomes
8 of the individuals? What lessons can we learn from that
9 model, because w e ’ve already done it? Are there things
10 that work? Are there things that don’t work that we should
11 avoid? So this is important as well.
12 We also need to maximize consumer input if w e ’re
13 going down this road. Consumers, the participants, their
14 families, advocates need to have a seat at the table, they
15 must have input, and not just in the initial design but
16 also ongoing. So there’s a whole body of research that
17 explains what’s important in terms of consumer input both
18 initially, ongoing, also a great body that looks at
19 quality, how you determine what is quality, who you need to
20 involve in determining what is good quality, what are the
21 indicators, how you manage it, how you determine it. And
22 so there’s a lot of important considerations.
23 The last thing I ’m going to mention, rate
24 setting, which gets really complicated and my eyes glaze
25 over when I hear the word, but it gets really important 31
1 because how you design the rates will determine who gets
2 served and what kind of services they receive.
3 So I want to thank you very much. This is a
4 complicated issue. I appreciate that. But my main point
5 is, you’ve got to look at it very carefully before you
6 jump. You need to review what’s already being done, and by
7 all means you need to involve families, the enrollees and
8 advocates in any kind of planning and implementation.
9 I thank the Committee.
10 REPRESENTATIVE MURT: Thank you, Mr. Gates.
11 At this time w e ’d like to call forward some of
12 our testifiers that will be discussing some issues relating
13 to adult protective services: Susan Rzucidlo, the
14 Executive Directive of Speak Unlimited; Bradley Piscitelli,
15 a person receiving services; and Judy Banks, Acting
16 Director, the Disability Rights Network of Pennsylvania.
17 Good morning. Thank you for joining us today.
18 Please introduce yourself.
19 MS. RZUCIDLO: Good morning. I ’m Susan Rzucidlo,
20 and thank you so much for the opportunity to speak to this
21 issue that is near and dear to my heart.
22 I am the Executive Director of a nonprofit
23 organization called Speak Unlimited. We provide free
24 advocacy services to families across our region.
25 I came into the advocacy world because of my son 32
1 Ben. Ben is now an adult, and one day he’ll be left here
2 without me to speak for his needs and protect him, and so I
3 have since he’s been born.
4 My husband and I have four children. Our second
5 son Ben was diagnosed with a severe form of autism at the
6 age of two years, nine months. It was later determined
7 that he has a functional IQ in the mid- to upper-30 range.
8 Ben speaks at about a two-year-old level. He can tell you
9 what he wants to eat, and he can tell you that he wants to
10 watch country-music videos or play a game on his iPad, and
11 when he gets really tired of all the adults in his world,
12 he says "sleep in the bed.” He leaves us.
13 Ben has a lot of great qualities, and he works as
14 a volunteer. He works at our local food bank, he works at
15 our church, he works at the Habitat for Humanity ReStore,
16 but he has one really bad quality, is that he is overly
17 compliant. Ben will go anywhere with anyone. He will take
18 his clothes off in a public area if asked to. He has no
19 comprehension of personal danger. He will, and has, walked
20 into the path of traffic. He will do whatever he is told,
21 and that makes Ben a perfect victim, which is the fear that
22 keeps me up at night.
23 For a number of years I ’ve worked with an amazing
24 group of advocates who fought to get an adult protective
25 services law in place in Pennsylvania, and while I was 33
1 thrilled to have this law passed in 2011, I was more than a
2 little disappointed that the funding didn’t follow. I know
3 everything takes more time than w e ’d like, especially in
4 Harrisburg, but tenacity is a common characteristic of
5 advocates, so here we are. W e ’re still working, still
6 sending in comments, still fighting for and trying to
7 assist individuals who live with disabilities.
8 There are many great advocates here speaking
9 today about the issues that are important to them. I ’m
10 going to focus on three concerns I have regarding adult
11 protective services law: mandated reporting, training for
12 law enforcement, and the need for an adult abuse registry
13 of convicted abusers.
14 First of all, I ’m very concerned that medical
15 professionals and others may not report abuse or rape if a
16 person is unable to file a complaint. This is a real
17 concern. Currently in Pennsylvania, hospitals are
18 encouraged to report abuse but they are not required to
19 report abuse. In meetings regarding the APS regulations,
20 an example was shared of a case of a person in a hospital
21 where the doctors did not perform a rape kit because of the
22 person’s disability. They felt they could not report rape
23 without consent, and this person was unable to give consent
24 for a test, but think about this: if an individual cannot
25 give consent for an exam, how could they possibly give 34
1 consent for sex?
2 While many individuals who live with disabilities
3 are able to consent to exams, many are not. I think it’s
4 important that we err on the side of protection of the most
5 vulnerable. I know people are sometimes uncomfortable
6 making reports if a person cannot verbally share that abuse
7 has occurred. We know from history and from following
8 child abuse cases that abusers can and have reported that
9 bruises and cuts were self-inflicted, that low weight is
10 due to an individual being unwilling to eat or having a
11 limited diet, and that the individual was a willing
12 participant in sexual acts. There are times that these
13 stories may be honest reports but there are also times that
14 these stories are actually hiding abuse from authorities.
15 We need mandated reporters to know the guidelines,
16 understand the process and be held accountable for making
17 reports.
18 We need colleges that are educating our future
19 staff and workers to teach about the need and requirements
20 of mandated reporting when it comes to Adult Protective
21 Services, and we need organizations such as the PA DDC to
22 fund conferences for advocacy, professional and service
23 organizations to include panels on preventing, identifying
24 and reporting abuse. We need public service brochures on
25 abuse risk reduction and reporting, and we need them 35
1 visible and readily available to everyone.
2 My second concern is comprehensive police
3 training. I do a lot of work with police officers when it
4 comes to disability training, and I think that it's
5 incredibly important that we teach them how to respond to,
6 evaluate and pursue abuse complaints that are specific to
7 people who require Adult Protective Services. In order to
8 ensure that every officer receives this necessary
9 information, a specific training program must be included
10 into the Act 180 training.
11 The Municipal Police Office Education and
12 Training creates and provides Act 180 training, and as you
13 may know, MPOETC is the only entity in Pennsylvania with
14 the authority to create mandatory training for police
15 officers. It is vital to the implementation of this law
16 that every officer receives uniform training, and while I
17 know there are many disability organizations who would like
18 to provide training to their departments in their
19 community, I think the most cost-effective and efficient
20 method of delivering a high-quality program would be to
21 have a few advocates meet and work with MPOETC in order to
22 provide the resources and suggestions for the training
23 program. This program must include: how to take
24 complaints using multiple communication methods, how to
25 write incident reports and how to investigate when a victim 36
1 may not be able to provide verbal testimony. Officers also
2 need to learn where to locate local resources and supports
3 for the victim and how to activate the adult protective
4 services system.
5 We also know that the same training should be put
6 in place for Act 120 as cadets are becoming officers so
7 that we can have a broader base of officers who know what
8 needs to happen. I am confident that if MPOETC worked
9 collaboratively with a few disability organizations, that
10 the training that is developed for police law enforcement
11 training would be delivered comprehensively to every
12 officer, and it would be effective and possibly a model for
13 other States to follow, just as Pennsylvania has for other
14 law enforcement and disability programs.
15 And lastly, the goal of the Adult Protective
16 Services program is to protect vulnerable adults whose
17 health and welfare may be affected by abuse, neglect or
18 exploitation. We need to raise public awareness about
19 Adult Protective Services, educate mandatory reporters
20 about their responsibility for reporting. I don't know how
21 we can reach this goal without a registry of people who
22 have been convicted either in the criminal or the civil
23 court system of abusing an adult with a disability. I've
24 brought this up for years, and I've always been told this
25 is a non-starter with legislators, which I can't believe. 37
1 Who thinks that protecting our most vulnerable residents
2 from being abused, beaten, neglected, raped and murdered is
3 controversial. I thought the point of Adult Protective
4 Services was to protect these very individuals. We need a
5 registry based on civil finding of abuse, neglect,
6 mistreatment, financial exploitation or a combination of
7 those findings to keep abusers from having access to the
8 same population that they have previously abused. I ’ve
9 been told that the unions won’t permit this, that they will
10 not sign on and support a registry, and I have a very hard
11 time believing that the unions who say their mission is a
12 just society and making sure that all families and
13 communities thrive would be against a registry that would
14 protect not only vulnerable people but also protect their
15 good and caring members that they represent.
16 I ’m also told that we can’t have a registry like
17 this because it will keep people from getting jobs, and my
18 response to that is: exactly. We don’t want them to have
19 jobs so they have access to abuse again. I know it’s not
20 in the regulations yet. I hope that you’ll consider
21 looking at how we could maybe put this in place as many
22 other States with adult protective services have it, and
23 I ’d like to thank you so much for your time and your
24 consideration of my testimony.
25 REPRESENTATIVE MURT: Thank you, Susan. 38
1 Bradley is now with us today.
2 UNIDENTIFIED SPEAKER: No, Bradley is unable to
3 testify today.
4 REPRESENTATIVE MURT: Our next testifier is Judy
5 Banks the Acting Director of the Disability Rights Network.
6 Good morning, Judy.
7 MS. BANKS: Good morning. I appreciate the
8 opportunity to speak to the Committee about Adult
9 Protective Services, and some of my testimony will
10 reinforce what Susan has said to you today.
11 As many of you know, up until 2010, Pennsylvania
12 did not have a protection system in place to protect
13 vulnerable adults between the ages of 18 and 59. Our
14 Governor signed into law Act 70, and w e ’re very happy and
15 pleased that that Act was signed into law. However, three
16 years later, we are still without a fully implemented Adult
17 Protective Services system, and that is one of the concerns
18 that I ’d like to raise with you today.
19 Currently, Act 70 is being implemented in a
20 partial way. The Department of Public Welfare issued what
21 is called a Transition Plan, which highlights several types
22 of priority issues that are to be investigated right away
23 within the 24-hour period. It also speaks to, and I think
24 does a pretty decent job of, incorporating Act 70.
25 However, the major concern that Disability Rights Network 39
1 has with the Transition Plan and other stakeholders is that
2 the application of the Transition Plan is inconsistently
3 applied across the State. You can go from one county to
4 the next speaking to one program office or service
5 coordinator or whoever the entity is responsible for
6 initiating an investigation and you’ll get different
7 answers as to what constitutes a priority case.
8 In my testimony, I identify a couple of examples,
9 and I ’ll use rape as probably the most severe outside of
10 death, but in the case of rape, for instance, it’s obvious
11 and in the Act it certainly is identified as a priority
12 case. In the Transition Plan, it’s identified not by name
13 but as sexual abuse as a type of priority report that would
14 require immediate investigation. However, what we find and
15 we get at DRN, we get calls from county personnel saying
16 well, we reported it to the police, is there more we need
17 to do under APS, and there absolutely is. As we know, rape
18 is a crime. It’s a hideous crime, and it’s one that
19 belongs in the hands of law enforcement.
20 So while law enforcement is doing their job in
21 investigating, the Adult Protective Services system was
22 never intended to supplant the work of the law enforcement.
23 It was put in place to protect the person, to make sure
24 that that individual was no longer at risk, that the risk
25 was removed from that person. And so when you have a 40
1 transition plan that is being applied in an inconsistent
2 way and with different interpretations, you really are not
3 achieving what Act 70 is intended to do, and I ’ll give
4 another example of a concern that relates to this.
5 As you know, anyone who has a communication issue
6 or cannot communicate what has happened to them, if that
7 person is remaining in their home and the police have done
8 due diligence to attempt to have the person express what
9 occurred but because of communication issues or the lack of
10 access to personnel or communication devices that could
11 assist someone, even facilitate a communication without the
12 access to those types of services, it’s likely that law
13 enforcement will determine that we can’t get the story or
14 the story is being repeated but is repeated in an
15 inconsistent fashion or we might get a result where the
16 D.A. is saying well, the story is there but we have a very
17 fragile witness and we don’t think that that witness can go
18 forward. With Adult Protective Services, certainly the APS
19 system could support that person through victim services,
20 through other types of services that need to support that
21 individual and going through the process. That is not
22 happening under this Transition Plan.
23 There also is a concern that the transition
24 processes uses the same program offices that are already
25 stressed, that are already in a conflicted situation. The 41
1 Act was very clear that county and any provider, anyone who
2 is in a conflicted situation should not be a bidder for
3 APS, and so therefore this interim process, which on paper
4 speaks to a lot of the provisions that are in Act 70 but
5 it’s the application and the interpretation from county to
6 county, and so our concern is that we need to move forward.
7 We need to make sure that DPW is held accountable for
8 creating a timeline that will move forward the process.
9 Only recently, the Department issued their RFP, which will
10 enable the Department to contract with agencies that would
11 like to implement APS, and we know that right now the
12 deadline at this point is January 6, 2014, that that’s the
13 deadline for submission for the RFP. However, the
14 Department estimates that the full implementation won’t
15 occur until July 2014. There’s a lot of work to get done.
16 We need a pace that’s steady. We need the Department to
17 really put forth their best effort to get the contracted
18 agencies in place and get the system up and running. So
19 that is one of my second issues.
20 The other one is the regulations. The Adult
21 Protective Services regulations of course have to be in
22 place. Usually regulations could take up to 18 months to
23 actually be finalized. At this point the draft regulations
24 with some questions about that the DPW legal counsel has to
25 address, those issues are in the hands of DPW personnel. 42
1 We would love for the legislature, this Committee to hold
2 DPW accountable for moving forward with the regulations so
3 that we can have a fully implemented system with high
4 integrity.
5 The last issue that I'd like to raise has to do
6 with funding, and of course, with the budget climate and
7 funding, asking for money is never popular. However, we
8 can't implement a system without funds. There's just
9 absolutely no way. In 2003, the Legislative Budgeting and
10 Finance Committee did a study, and estimated that a full
11 operational system would cost about $5 million. Since that
12 time, DPW has estimated that the system using State dollars
13 would cost about $4.6 million to actually operate starting
14 in 2014. So we really implore our legislature to make sure
15 that the $6.4 million and what we're looking at is that
16 there's a possibility of using other funding, federal
17 funding.
18 There are other States that use federal dollars
19 to supplement their State dollars to implement their
20 program. Florida is one of those States. The Department
21 has worked very closely with stakeholders, and we've shared
22 information with them about other States that have used
23 medical assistance dollars to provide services that fall
24 under eligible services that are being used to help people
25 get the services that they need to remain safe in the 43
1 community.
2 So with that, I'd like to just emphasize three
3 points. One is, we have a transition process, and if you
4 look at that process, it looks good. DPW did a good job of
5 extracting the information out. What's not happening is
6 the application of it, and it's not protecting people in
7 the way that it should be, and so we need to move forward,
8 and we need the Department to be held accountable for
9 setting timelines that are reasonable but have a constant
10 steady pace, and I also want to mention that Act 70
11 requires that the Department produce a report as to how
12 they're implementing the law on an annual basis, and I
13 don't know if that's been done. However, it should be
14 done. It's part of the law.
15 And the other request is that we get the funding
16 that's needed to implement a full system so that we're
17 protecting the citizens who are most vulnerable in our
18 State who need Adult Protective Services. So thank you.
19 REPRESENTATIVE MURT: Thank you, Judy.
20 Our next testifiers are going to discuss some
21 issues related to the direction from the Office of
22 Developmental Programs and from DPW: Mrs. Patricia McCool,
23 the Bureau Director, the Bureau of Supports for People with
24 Intellectual Disabilities from ODP; Mr. Dave Kaufman, the
25 Executive Assistant, Office of ODP. 44
1 Good morning, and thank you very much for joining
2 us today.
3 MRS. MCCOOL: Good morning. Thank you very much.
4 My name is Patty McCool. I ’m the Director of the Bureau of
5 Supports for People with Intellectual Disabilities, and Mr.
6 Kauffman is going to present our testimony today.
7 MR. KAUFFMAN: And I believe it is now good
8 afternoon. Sorry.
9 Good afternoon, Chairman DiGirolamo and
10 Representative Murt and Members of the House Human Services
11 Committee. As Patty said, my name is Dave Kauffman, and
12 I ’m the Chief of Staff for the Office of Developmental
13 Programs, and Patty McCool is the Bureau Director for the
14 Bureau of Supports for People with Intellectual
15 Disabilities, and we are representing Fred Lokuta, who is
16 the Deputy Secretary for the Office of Developmental
17 Programs.
18 We want to thank you for this opportunity to come
19 before the Committee to discuss ODP’s efforts to serve the
20 people of the Commonwealth with intellectual disabilities
21 and with autism, and provide people with the opportunity to
22 live independent, dignified lives in their communities.
23 Truly, the options for those receiving State
24 supports have never been as broad or as deep as they are
25 today. Participants may live with their parents or in the 45
1 community, going to work each day for employers large and
2 small, or learning useful life skills in one of the many
3 day programs throughout the State. In addition, the number
4 of people served by the Community Waiver programs is the
5 highest it has been since at least 2002, now reaching over
6 27,000 people. Thanks to the work of Governor Corbett and
7 the legislature, ODP received increased funding to take
8 individuals off the waiting list for the second consecutive
9 fiscal year, and last year in fiscal year ’12-’13, the
10 initiative that was in Governor Corbett’s final budget
11 increased funding for 1,130 Community Waiver participants,
12 and that included 700 participants for students leaving the
13 school system in fiscal year ’11-’12. So they were
14 graduates. And it also included 430 positions for persons
15 with aging caregivers defined as having a primary caregiver
16 greater than 60 years old.
17 For the current fiscal year, ’13-’14, in Governor
18 Corbett’s final budget, the Waiting List Initiative
19 provided funding for an increase of 1,080 Community Waiver
20 participants, and that included 700 positions for students
21 leaving the school system in fiscal year ’12-’13 and they
22 were graduates, and it also included 380 positions for
23 persons on the Emergency Waiting List. Also, in addition,
24 funding was increased for 118 persons on the Adult Autism
25 Waiver Interest List, which was the first initiative of its 46
1 kind in Pennsylvania.
2 As soon as Governor Corbett’s fiscal year ’12-’13
3 budget was enacted, ODP’s program personnel began a
4 statewide effort to enroll the eligible persons from the
5 waiting list and match each of them with service providers.
6 It is important to note that after years without an active,
7 successful effort to add members, Governor Corbett’s
8 Waiting List Initiatives sought to enroll two times more
9 participants in each of the last two fiscal years than
10 would enroll in an average year. This is a significant
11 operational challenge that could not be overcome without
12 the work, persistence and collaborative spirit of those
13 working to serve the ID and autism communities. I want to
14 thank all stakeholders, families, supports coordinators,
15 providers and counties for their efforts to execute these
16 initiatives.
17 As of November 1, 2013, 318 of the graduates and
18 256 from the Emergency Waiting List have been enrolled
19 including 21 unanticipated emergencies. Compared to their
20 respective fiscal year ’13-’14 totals, these enrollment
21 figures represent 45 percent of graduates and 67 percent of
22 those from the Emergency Waiting List.
23 Despite some initial challenges, the enrollment
24 process is gaining efficiency with 182 participants
25 enrolled in November versus an average of 90 per month for 47
1 the previous months including the fiscal year ’12-’13
2 initiative. We are pleased to report that due to ODP’s
3 program staff’s projects, we will accomplish our goal of
4 full enrollment into the community waivers by the end of
5 the fiscal year.
6 The people enrolling through the Waiting List
7 Initiatives are taking advantage of the broad range of
8 services available within the waiver programs by choosing
9 the mix of activities best suited to their individual
10 needs. Notably, the majority of those enrolling in the
11 Consolidated Waiver are choosing to utilize home and
12 community habilitation services, as Lisa Tesler said. The
13 goal of home and community habilitation services is to help
14 participants gain, maintain or improve socialization and
15 adaptive skills. This service has the added benefit of
16 allowing participants to remain in their own homes where
17 they are comfortable and feel safe. Others are choosing
18 family living homes where they reside in a private home
19 with care providers and often another waiver participant.
20 This maintains a familial style of living arrangements for
21 the participants while providing the supports they require
22 for the foreseeable future. Also, family living homes
23 limit the investment needed to start new community homes,
24 reducing the financial risk borne by providers.
25 As a result of the funding that Governor Corbett 48
1 and the legislature provided and the efforts of all
2 stakeholders, the number of people on the ODP waiting list
3 is approximately 14,600, down from approximately 15,800 in
4 December 2012. Additionally, as of April 2013, 54 percent
5 of the individuals on the waiting list classified as
6 needing services within two years are receiving some ODP
7 services through the Community Waiver or base programs.
8 While we acknowledge there is more to do to service those
9 on the waiting list, the significant progress we have seen
10 over the last two fiscal years is encouraging.
11 At ODP, we continue to embrace the evolution of
12 service delivery and strive to provide our participants
13 with as many viable options as possible. ODP is involved
14 in a comprehensive futures planning effort that includes
15 representatives from all stakeholder groups and
16 representatives from other State departments such as
17 Education, and Labor and Industry. This effort is seeking
18 to identify short- and long-term goals that will continue
19 to move the program forward. We believe this year's and
20 last year's Waiting List Initiatives have been extremely
21 successful for the participants, their families and our
22 dedicated provider network.
23 Despite the fiscal pressures we are all under, we
24 are grateful to have the resources to continue our
25 commitment to addressing the waiting list. This ensures 49
1 that as many eligible residents of the Commonwealth as
2 possible have access to our programs. We urge the
3 legislature to continue to support the expansion of both
4 ODP’s Consolidated Waiver and autism programs in fiscal
5 year ’14-’15, providing much-needed services to the State’s
6 most vulnerable populations.
7 Again, we want to thank Governor Corbett, the
8 legislature and the House Human Services Committee for your
9 time today, and Patty McCool and I will be happy to answer
10 any questions later.
11 REPRESENTATIVE MURT: Thank you, Mr. Kauffman,
12 and thank you, Patty.
13 Our final two testifiers will be Mrs. Dee Coccia,
14 the Co-Executive Director for Visions for Equality, and
15 w e ’ll also see a video presentation from Theresa and Steve
16 McCarthy. Dee, are you here today?
17 Also testifying with Dee will be -- will Maureen
18 be testifying, or no? No? Okay. Thank you.
19 MRS. COCCIA: I thought she was going to join me.
20 REPRESENTATIVE MURT: Good afternoon, Dee. Thank
21 you for being with us.
22 MRS. COCCIA: Good afternoon, everyone.
23 My name is Audrey Coccia, and I ’m Co-Founder and
24 Co-Executive Director at Vision for Equality, a statewide
25 advocacy organization that provides advocacy, monitoring, 50
1 training and outreach to thousands of people with
2 intellectual disabilities and autism and their families
3 across Pennsylvania. Vision for Equality is well known,
4 experienced and trusted in the intellectual disabilities
5 and autism community.
6 You've heard testimony here today about the
7 continued concerns about the waiting list and the process
8 of enrollment, the many who still wait and their need for
9 services, our concerns about managed care related to people
10 with disabilities, Adult Protective Services and the Office
11 of Developmental Program's Vision and Future Plan, all
12 issues of serious concern to our community.
13 I have been involved in the disability system for
14 the better part of the last 40 years. I can say
15 unequivocally that during this time, our State has stood in
16 the forefront of change in upholding the rights of people
17 with disabilities and providing the opportunity for them to
18 live and flourish in their communities.
19 We are one of the first States to bring right to
20 education to children with intellectual disabilities. We
21 have seen the closing of some and downsizing of other State
22 centers, and we have witnessed the productive, rich lives
23 of those who have returned to their communities. We have
24 seen the establishment of self-advocacy groups and emerging
25 leaders within those groups who are teaching others about 51
1 community, jobs and rights. We have seen the establishment
2 of a community service system that has supported people and
3 their families and have given them an opportunity through
4 support to live at home for many years with their families
5 in their neighborhoods as contributing members of their
6 communities.
7 In these 40 years, we, Pennsylvania, has been on
8 the cutting edge of change that has led to choice,
9 independence and freedom for those with disabilities. We
10 have proudly led the way. Yet now, in spite of the
11 benchmarks we have achieved, our system over the last
12 decade seems to be unraveling. Fiscal constraints and
13 limited funding year after year are eroding our success.
14 It is obliging agencies to consider going out of business
15 or shutting community homes, closing workshops or laying
16 off much-needed staff. We have seen counties considering
17 imposing cuts to services for people living at home who
18 rely heavily on base funds for just a little help. We are
19 watching our community systems shrink to such a point there
20 remains less than a handful of community placements left
21 when emergencies occur. Providers are closing their doors
22 to those with exceptional need and more and more people are
23 going to State centers, private intermediate-care
24 facilities and boarding homes due to lack of adequate
25 community funding for those with increased behavioral 52
1 needs. More people are going into nursing homes that do
2 not need to be there because agencies are turning away
3 medically fragile, high-cost individuals who need their
4 help. We are being forced by our lack of vision many
5 people back into more costly settings and decreasing much-
6 needed funds to the community.
7 All this is creating instability in our system
8 and robbing people and their family of any sense of
9 permanency in their lives and causing them fear that their
10 family member after all their hard work and struggles
11 keeping them home all these years may see them end up in a
12 segregated setting, something they fought so hard to
13 prevent.
14 The last eight years of constant efforts and
15 system changes to our service definitions, billing
16 practices, provider rates and regulations that have led to
17 all of this has made our system unstable at best. None of
18 these failings in our present system shows foresight or
19 doesn’t make any fiscal sense.
20 Now, on top of this, we are presented with now
21 more reform by the Office of Developmental Programs
22 "Today’s vision, Tomorrow’s Reality.” This watershed
23 requires our attention. We are at a transforming moment
24 when we can decide whether we as a State and as an
25 intellectual disabilities system want to continue to move 53
1 towards one community for all or embark as yet on another
2 effort that may or may not turn out right whether we are
3 ready to attempt to build a house on sand, to right the
4 system again one more time, imposing more major changes in
5 an already weakened system with yet new models of services
6 and funding reform, a plan that wants to use a costly,
7 failing assessment tool, the Supports Intensity Scale, and
8 tie it to people’s budgets, impose managed care on the most
9 vulnerable in the hopes of saving money, and leave costly
10 State centers in place to continue to eat up almost a third
11 of the budget each year for 1,100 people while 15,000 wait,
12 and while it appears cutting 50,000 others back, especially
13 those living at home. This is not a plan we as families
14 can promote or support. We must sadly say today we are
15 deeply concerned and, frankly, worried about the vision and
16 future direction that is being laid out by ODP for the
17 State of Pennsylvania and our family members.
18 You know, it is good to remember, sometimes we
19 forget it is about our family members. We fear the
20 impressive history that the State of Pennsylvania and its
21 many stakeholders including families has built is now about
22 to implode. Continuing to right a system over and over
23 again without considering impact time after time has the
24 capacity to collapse all we know and hold dear.
25 Families are not afraid of change. We know 54
1 change can be good. Many of us are the very families who
2 challenged the State of Pennsylvania and the system for
3 change and refuse to place our loved ones in State centers
4 years ago. We are the families responsible for opening the
5 door to schools, building community and giving people with
6 intellectual disabilities for the very first time real
7 lives and community, but we are not about to allow our
8 family members to be the possible victims of another failed
9 attempt for reform. Systems as large as this with such
10 vulnerable people should see slow but constant improvement
11 and reform with measurable outcomes and repeated checks for
12 success and failure.
13 Let us consider in any future changes to our
14 system taking the following multi-tier approach: commit to
15 building a strong infrastructure first to support our ID
16 system before embarking on more system reforms; adequately
17 fund our ID system to support the people in it; see that
18 people with ID be carved out for the managed-care plan;
19 instead of trying to cost and cap services, let us continue
20 to leverage much more federal funding as we can through
21 home- and community-based funding for services so that we
22 can adequately address the waiting list, not solve it on
23 the backs of those already in community services.
24 All changes to the system, new and old, should be
25 vigorously evaluated for adequacy to protect people and 55
1 address deficiencies promptly. Lower costs by utilizing
2 family caregivers, building upon their strengths and
3 resources through home- and community-based waiver to
4 support people at home for as long as possible. It is the
5 cheapest way to go. Develop an Olmstead Plan that will
6 downsize and close all State centers and place a moratorium
7 on all future admissions of people with intellectual
8 disabilities and autism to State centers and nursing homes.
9 After 40 years, I can't tell you how many times I and many
10 other have appealed for this. Where is our Olmstead Plan?
11 Reinvest the monies from State centers closing into the
12 community service system, that will help a lot. Take the
13 necessary steps to increase the rates appropriately,
14 especially for providers who are willing to support those
15 with compelling needs. If change is coming, let it be
16 change that will help people, not hurt them or their
17 families, or our fragile intellectual-disability system.
18 Now, before I close, I need to say one more
19 thing. Many of our families have heard that members of the
20 Office of Developmental Programs have made comments
21 recently about families and community, and that they're
22 afraid of change, as Lisa said and others have said, and
23 also that somehow they've gotten the golden goose and
24 they're grabbing up services. If you think a family like
25 Mrs. Novak's family don't deserve help and the next young 56
1 family that w e ’re going to show you on this, I can’t tell
2 you how disappointed I am. I can tell you as a parent who
3 for 48 years has devoted my life and my husband’s life to
4 my daughter, all these families and community, and w e ’re
5 talking about thousands of them who are taxpayers and
6 voters in this State who have devoted their lives to their
7 families, keeping them at home at great effort but all
8 effort has given you as a State more money in the coffers
9 because we haven’t asked to place our kids in State
10 institutions, all that money that has been saved by the
11 State, and the families have done it with love, but for
12 anybody to disrespect families who give their life, who
13 jeopardize their jobs, who often are sick and dying and
14 still caring for family members, to in any way infer that
15 they are taking money or grabbing of services is totally
16 disrespectful, and I have to go on record saying that
17 because I think it’s a disgrace for any office of this
18 Commonwealth to make comments like that about families.
19 Again, I want to thank you, and if I seem a
20 little upset or angry, I am when I hear comments like this
21 come from offices of our Commonwealth, servants who are
22 supposed to be supporting and protecting and caring about
23 people and their families to make comments like that to me
24 is personally insulting, and I would like to say that for
25 all the families, we appreciate that you guys have been 57
1 wonderful. You have done everything you can to keep
2 working on that waiting list. We know it'll never go away,
3 but we know every time you help a family and a family like
4 Mrs. Novak just how much it means to them, and we can't
5 appreciate enough that not only do you have the desire to
6 do it but the heart to do it for all of them, and we thank
7 you. Maureen, do you...
8 MS. DEVANEY: We want to show you a little video
9 now.
10 REPRESENTATIVE MURT: Maureen, could you
11 introduce yourself, if you don't mind, for the record?
12 MS. DEVANEY: Sure. I'm Maureen Devaney. I'm
13 the Co-Executive Director of Vision for Equality. I've
14 worked for years on the Waiting List Campaign. I have a
15 daughter, Colleen, who lives at home with me and is
16 supported by an agency called SPIN in the Northeast, and
17 Colleen goes there five days a week, so we appreciate the
18 support that she gets there, and I think what Dee said too
19 is, you know, we're not out to take, we give back, and I
20 think we do that with our advocacy and our efforts, and we
21 don't just sit home and say here's services.
22 We want to show you this little video of a young
23 lady who actually lives in Bucks County, and she is taking
24 care of her 26-year-old son, Mrs. Theresa Caputo and her
25 son, Steven, and Theresa will tell you her story. She 58
1 can’t be here today because in a few weeks she’ll be having
2 a new baby, and we really wanted to get her here but she
3 was unable to travel at this time.
4 Theresa is one of my heroes. She’s dedicated her
5 life to her son, but because she has services, she was able
6 to go back and get her nursing degree, and Steve goes out
7 during the day and does some things, and they have a full
8 life in their community, and Steve is the guy you would
9 think, hey, how can you support him in the community, and
10 you’ll see through the love and care of Theresa, who has
11 done this basically on her own with little support, it’s an
12 amazing story. So Ned, are you going to show us the video?
13 (Video Presentation.)
14 MS. DEVANEY: I can tell you what she’s saying.
15 She started out by saying Steve, her son, drowned when he
16 was three years old, and he was a typical child, you know,
17 she took care of him. They did what they needed to do as a
18 family and after his drowning, Steve became so
19 incapacitated that the only basic thing he can move is his
20 eyes. He needs total care. He needs to be turned during
21 the day and during the evening. They used to live down in
22 Oxford Circle and then they moved up to Bucks County maybe
23 about 10 years ago. If you could hear her, and it’s a
24 shame that her voice is low and her mannerism is just
25 great. She’s just a dedicated mom who was determined not 59
1 to let Steve go and to take care of him. I think Theresa
2 wouldn’t mind me saying, I think she’s 44 years old, so she
3 was young she said in the video when I heard it the other
4 day when she had Steve, but out of sheer determination and
5 a will to take care of her child even though he had a
6 disability after he was born, she decided to do this. Here
7 it says as Steve wakes up at 6 a.m., and then she starts
8 her day, and she starts by saying oh, you know, it’s a
9 routine but it’s my routine, it’s how I take care of him
10 before they do anything and she has to have him bathed and
11 to turn him over like I said and make sure he’s clean and
12 healthy and his medication is given to him.
13 Maybe we can send you the link to this so you can
14 probably hear it on your desktop, and I have to repeat,
15 this is a woman who is a model for all of us moms, who
16 needs to do this work every day. They’re unsung heroes.
17 W e ’re nurses, w e ’re sometimes doctors, we tell the doctors,
18 or make recommendations to doctors what to do for our kids,
19 and it can be done at home and it can be done with support.
20 If we don’t have the support of a good provider, we can’t
21 do it at home, but we see the future as more moms and dads
22 wanting this for their kids.
23 I think Lisa earlier or someone earlier was
24 talking, and I think Dave said it too, most of the people
25 who asked for supports last year in the Waiting List 60
1 Initiative wanted in-home supports. We know how to do
2 this. We should do it right. We don’t want institutions.
3 Theresa is having her baby in a few weeks, and one of the
4 other things she says in this video is when she asked for
5 additional help just to get through -- she’s having a C-
6 section so she needs about a six-month period to have
7 additional help in her home -- someone put Steven’s name in
8 for an ICF, which is an intermediate-care facility for
9 people with mental retardation and intellectual
10 disabilities. She was appalled. She did not want that.
11 She called us. Theresa calls me every year if there’s some
12 issues but she called us recently, and Emilio in our office
13 helped her get more in-home supports, and that’s some of
14 the things we do at Vision for Equality. Here it said her
15 request was denied. They denied her request to get more
16 in-home supports but just recently the other day we heard
17 that they did get in-home supports.
18 So it’s possible to do this. She’s going to have
19 a new baby at home with staff in the house for him, but she
20 only needs more support for six months and then after the
21 support that she needs at home will be less, so she’s not
22 asking for it for the rest of her life or his life.
23 So I don’t know if you have any questions but I
24 would love you to meet Theresa and Steve, I think
25 especially Representative DiGirolamo. She lives right in 61
1 Bensalem, so it would be nice if you could go see them some
2 day. I think you’ll just be amazed.
3 REPRESENTATIVE MURT: We do have some time for
4 some questions, and while you’re here, Dee, I would ask you
5 to please explain the concept of this Olmstead Plan to the
6 Members of our Committee.
7 MRS. COCCIA: Well, the Olmstead Plan probably
8 could be better told to you by Judy Banks, but the Olmstead
9 Plan requires that every State have a plan to look at their
10 State centers, see that people who are able to come out,
11 come out, and that there be a plan to downsize the State
12 centers. You know, there’s 12 States in the United States
13 who have closed all their centers, which is commendable. I
14 really thought we would be one of them too.
15 Clearly, this Administration is not interested in
16 doing that, it looks like, but certainly there is an
17 obligation, and you could eventually get sued for not
18 having an Olmstead Plan, and there hasn’t been one in
19 place, as far as I know, at all. I know when we had the
20 PAC, the Planning Advisory Council, we attempted to put
21 together a plan but it was never approved, so this State is
22 riding without a plan, and it’s possible someone could sue.
23 And it makes sense, anyway. I mean, if you go into State
24 centers -- I ’ve moved many people out of State centers, and
25 once they find out you’re moving people out, people will 62
1 run to you and say can you get me out, help me to get out,
2 and I think that first of all, it's more reasonable and
3 usually more cost-effective for people to live in the
4 community. I could take you to houses and to people living
5 in life sharing whose lives have been incredible since they
6 have left State centers. People need and deserve that
7 opportunity. Besides, they have the right to it. They
8 deserve it, and we ought to be working towards that.
9 And it's costing $256,000 for every person that
10 lives in that State center. We understand that there are
11 families that are somewhat opposed to it, and we respect
12 that, but there's many who want to leave, and we should be
13 making sure that they do.
14 MS. DEVANEY: I wanted to say something too.
15 One-third of our budget services 1,000 people in these
16 State centers, and there's five State centers. So if you
17 think of it, that's a lot of money to serve just 1,000
18 people, and ODP can give you the figures on the costs, and
19 Dee said it's about $256,000 a person. They're an
20 antiquated way of doing business now, and that's what it
21 is, unfortunately, human services. People want community.
22 The younger families, people who have 2 0-year-olds, they
23 don't want anything to do with any kind of segregation.
24 They want community services. They want people to live
25 around the corner from them in an apartment. We want to 63
1 design a different world for the people who are coming up,
2 and I think we can do that.
3 Steve Suroviec, who was the Executive Director of
4 The Arc of Pennsylvania, when the Corbett Administration
5 came in, submitted a plan to close institutions, and that
6 plan went in when they did the initial thrust to develop
7 what was going to happen in this Administration. We would
8 like to see that resurrected and looked at. We thought it
9 was a good idea, and Steve now is with the Office of
10 Vocational Rehabilitation. He does work for the State, and
11 I’m sure he would be willing to talk to us about it, and we
12 would be willing to look for you to see if that’s something
13 that we could see happen in the future.
14 Colleen, my daughter, is 43 years old, and I
15 always make this personal because I think it’s really
16 important, she’s lived at home that long. I don’t want to
17 see her go anywhere other than community when I can’t take
18 care of her any longer. She deserves to live in the
19 community. She’s always lived with her brothers and my
20 husband and I, and I think it’s important for her, and she
21 likes being home.
22 So I think any kind of setting that she lives in
23 in the future should be home-like just like our home, and
24 like Dee said earlier, I didn’t work all these years for
25 everybody, not just Colleen, to see anybody go in these 64
1 State centers. I don't think it is anything that we want
2 to see. Any one of us, any one of us parents sitting here,
3 today can tell you that it is our greatest fear.
4 MRS. COCCIA: And it's not because they're bad
5 places. It's just that they're antiquated. And in these
6 times, thanks to our State, we have shown young families
7 for the last 30 to 40 years that their sons and daughters
8 can go to school, they can achieve, they can learn, they
9 can even some get jobs. So people have known communities
10 so well now that they don't even want to consider anything
11 else.
12 And just to go back again, I'm 73, my husband's
13 75. My husband has had severe cancer twice, and he almost
14 died, and if we didn't have waiver, we would have never
15 made it through some of the hardest days. My husband was
16 in a bed very ill for a whole year. It made it possible
17 for me to care for him and to care for her? And you know
18 what? She deserves that, and we as a family deserve that,
19 and I think it is so offensive to me and hurtful to think
20 that even now at 73 and 75, my husband and I get up many
21 days. I have to bathe and dress my daughter and feed her.
22 Sometimes we have accidents in the morning that the two of
23 us have to clean up, and we don't mind any of that because
24 we love her and we're glad to do it for her, but to make it
25 look like families are trying to grab off the system, it 65
1 just seems so wrong to me for people to -- we owe these
2 families, and w e ’re talking about 1,000, a great debt of
3 gratitude for all they have saved this Commonwealth. The
4 least we can do for them is to see in the times when they
5 need it that w e ’re there for them, and I hope we always
6 will be.
7 REPRESENTATIVE MURT: I have a couple questions
8 but I want to give the Members an opportunity, but I do
9 want to acknowledge Representative Doyle Heffley, who has
10 joined us. Welcome.
11 Do any Members have questions? Mark,
12 Representative Painter.
13 REPRESENTATIVE PAINTER: Thank you, Mr. Chairman.
14 I’d like to begin with the observation that my
15 wife is taking off from work today because we have an adult
16 son who’s disabled and is having a problem, and she’s doing
17 that so I could come to session today. That’s just another
18 day in the life of a family with a disabled family member.
19 I have a couple observations I ’d like to make
20 about wait lists from the perspective of a family member
21 and some of their pernicious effects. One of them is that
22 of course families in crisis tend to get bumped to the top
23 of the wait list, which is understandable, but if the
24 system isn’t taking in new consumers fast enough, you end
25 up with a situation where only people in crisis get 66
1 services. If you are on the wait list and you are not in
2 crisis, effectively the system is telling you, w e ’ll get to
3 you when you have one. And sometimes I feel like vultures
4 are circling over my head.
5 You know, the fact is that all families are going
6 to have a crisis sooner or later. It may be tomorrow. It
7 may be decades from now, but there always will be a crisis.
8 Services provided in times of crisis are likely to be less
9 appropriate because of the urgency of the situation.
10 They’re likely to be more expensive from the Commonwealth’s
11 standpoint, more restrictive perhaps in a placement
12 hundreds of miles away from the family because that’s what
13 was open on the day that the crisis hit.
14 An important reason to address wait lists is, we
15 want to move away from a crisis-driven system to a system
16 that has time to plan and develop services that are a good
17 fit for the consumer.
18 Second of all, another observation, I have two
19 adult sons with autism. They’re both getting services
20 under the OBRA Waiver because at the time, that seemed like
21 the best waiver. With one of them, w e ’ve been advised by
22 providers that perhaps another waiver would be a better
23 choice because people change, you know, my son’s needs
24 change over the years, and as Ms. Stasko and others have
25 pointed out, the program’s changed too. The system’s 67
1 changed over time, but we learned that in order to do that,
2 we would have to terminate services under the OBRA Waiver
3 today and then put my son on a wait list for services under
4 the new waiver, and w e ’re talking about a wait time
5 measured in years.
6 So the system is encouraging families to settle
7 for second-best programs, and again from the Commonwealth
8 point of view, less appropriate programs may well be more
9 expensive and give you less value for your money, so both
10 from a family perspective and a Commonwealth perspective,
11 this is not an ideal situation. I just want to make those
12 observations. I don’t know if the folks from DPW would
13 like to address them or not, but that’s my two cents’
14 worth.
15 Thank you, Mr. Chair.
16 REPRESENTATIVE MURT: Mr. Kauffman or Patty
17 McCool, would you like to respond?
18 MRS. MCCOOL: I think that Representative
19 Painter, you made a good point about the fact that for a
20 long time, only the people who really were in the most
21 emergency situations were getting enrolled in the waiver,
22 and I think w e ’re extremely grateful for having the Waiting
23 List Initiative because as folks have testified, we have
24 been able to take people who have been waiting for many,
25 many years who have elderly caregivers and have been able 68
1 to support their family member at home and now can do so
2 with the services, and we heard not only stories from
3 families and individuals who now know they can continue to
4 stay home together but also the staff in the county
5 programs who are so grateful because they know that they
6 have these people waiting and really want to support them,
7 but as you said, when the really emergency situations hit,
8 they have to address those.
9 So I think that’s one of the real benefits w e ’ve
10 seen through the Waiting List Initiative is for those
11 individuals who have waited so many years with their
12 families to be able to get those supports, and w e ’ve seen
13 the same things for the graduates also, people who in the
14 past have had to wait, and when they graduated, their
15 families ended up in situations where maybe a family member
16 had to quit working to stay home and support their family
17 member. W e ’ve been able to have that move forward, and
18 with the support of the Waiting List Committee, w e ’ve been
19 able to address not only the individuals who graduated in
20 2012 and now 2013 but we also had a couple years where we
21 had no increase in capacity, and so from 2010 and 2011, we
22 still had people who were waiting who had graduated that
23 we ’ve now been able to go back and get enrolled.
24 So certainly where w e ’ve seen the real benefit
25 from the waiting list is for those people in the community. 69
1 So we thank you again for that.
2 MS. DEVANEY: Could I say something too? We did
3 have a few other families call us about being in the OBRA
4 Waiver also and the fear is if you decline that, like you
5 said, the son or daughter will sit home for a year or two
6 or more before they get into the other waiver, and I think
7 as some of the folks earlier addressed the systems change
8 issues, and I don’t think we brought that to your
9 attention, and I ’m glad you did, Representative Painter,
10 because it’s not widespread but it’s enough people that
11 it’s concerning, and I think we need to do something about
12 it while w e ’re transforming any system, look at how we can
13 make things easier for families and not get bogged down in
14 paperwork and process.
15 REPRESENTATIVE MURT: Representative DeLissio?
16 REPRESENTATIVE DELISSIO: Thank you, Mr.
17 Representative Murt.
18 Just a quick couple of comments. I ’ve been doing
19 this elected official thing now three years, and it’s just
20 amazing to sit through some of these hearings and to watch
21 the expression on those who are testifying today, those in
22 the audience. I think some days the best thing that we can
23 do is convene counselors to try to reconcile two sides of
24 any issue, and I see that as the biggest observation I ’ve
25 had in my 36 months up here is the process does not serve 70
1 the citizens well, whether it's the legislative process
2 that produces this public policy or the process internally
3 within these State agencies and various bureaucracies that
4 has charged them with taking that legislation and
5 implementing it. The process sucks.
6 I think I'd like to give everybody the benefit of
7 the doubt that you're all here for the best reasons
8 possible. Nobody's here to undermine services or folks.
9 That just wouldn't be probable. Is it possible? Yes. So
10 I really, really encourage -- and I know we have a new
11 Secretary in the Department as legislative liaison that's
12 in the back of the room and sincerely hope that Secretary
13 Mackereth's MO going forward is to be as inclusive as
14 possible, and I mean every step of the way. I've sat in
15 hearings where people have said yeah, I talked to somebody
16 in the western part of the State, therefore, they were part
17 of the process. Part of the process means that it's a 360,
18 everybody involved in this, and most people's eyes glaze
19 over and say we'll never get anything done. You ain't
20 getting anything done anyway. So you do a 360. You
21 develop a process and you manage that process to deliver an
22 outcome that works, that's efficient, that's effective.
23 My 30-year private-sector career tells me every
24 day this can be done. We just need the political will to
25 do it here. My two cents. Now I'm going to go fight for 71
1 transportation funding.
2 REPRESENTATIVE MURT: Thanks, Pam.
3 MS. DEVANEY: Could I say something again? We do
4 need the political will but the departments have to work
5 together or it won't work, and I think not that they don't
6 talk but I think they need to work together, like you said,
7 sit at the same table. Everybody has to be together.
8 REPRESENTATIVE MURT: Any other questions? I
9 have a couple.
10 Is the Olmstead Plan the same as the waiting list
11 plan? No? Okay. I had a big concern, Susan, when you
12 were talking about Adult Protective Services, and how
13 there's no registry of people who have been convicted of
14 abusing an adult with a disability. I would ask you, you
15 mentioned some other States have this in place. Could you
16 provide me with that information? Because that's something
17 I'd like to pursue here in Pennsylvania legislatively. I
18 think that's a great idea and I think it's long overdue, to
19 be honest with you.
20 MS. BANKS: Representative Murt?
21 REPRESENTATIVE MURT: Yes, Judy?
22 MS. BANKS: Judy Banks from DRN. I just want to
23 explain a little more about the Olmstead Plan. Olmstead
24 was a ruling by the Supreme Court that recognized that
25 anyone live in an institution was living in a segregated, 72
1 restrictive setting and that those individuals have the
2 right to live in the community, and so as a result of that,
3 it upheld, of course, the discrimination provisions under
4 the ADA, which says that a person cannot be discriminated
5 against because of their disability. So it pretty much
6 interpreted that anyone living in an institution is being
7 discriminated against, particularly if they don’t want to
8 live there, if the professionals that say that that person
9 can live in the community, and the State has to put forth
10 an effort to transition the person to the community.
11 So in essence, what our State has not done, and I
12 believe more than maybe seven, eight years ago attempted to
13 put together an Olmstead Plan that would cross all program
14 offices. That was unsuccessful. Currently, Omsos has an
15 Olmstead Plan that speaks to individuals with mental
16 illness that are living in State hospitals. However, that
17 plan doesn’t have the timelines that are required. In
18 order to be constituted as a plan, you have to have actual
19 timelines by which you’re having people move from the
20 institution. ODP at this point does not have an Olmstead
21 Plan. Their futures planning is not Olmstead. I think
22 Sheila and others have testified that individuals who are
23 currently residing in State centers are not a part of that
24 future planning to move them out and to make sure that
25 people are living in the community. It should be a 73
1 systematic plan that you see a progression of people moving
2 out over time, and I can share Olmstead Plan with you.
3 REPRESENTATIVE MURT: I would appreciate that, if
4 you don’t mind.
5 Patty from ODP, I have a question. Sheila
6 mentioned something about a waiting list plan here in the
7 Commonwealth to address our waiting list. Do we have a
8 list? Is it being drafted? What is the status? That to
9 me seems like a very fair question.
10 MRS. MCCOOL: It is currently in draft, and what
11 we ’re looking is the cost that would be associated with
12 that, and we did have a call a month ago or so that at
13 least we want to get moving to the Waiting List Campaign,
14 the plan that doesn’t include the figures yet but just to
15 make sure people have that.
16 REPRESENTATIVE MURT: Do you have any idea when
17 that plan might be completed or at least available for
18 review?
19 MRS. MCCOOL: I ’m not sure when it’ll be finally
20 finalized but I think we can make sure that we can work to
21 get it available to people as soon as possible, at least as
22 much as is contained without the figures.
23 REPRESENTATIVE MURT: Is this a plan that’s being
24 drafted internally with just members from DPW?
25 MRS. MCCOOL: I apologize because I was not 74
1 involved in the development of that, but my understanding
2 is that we had input from the Waiting List Campaign on that
3 process.
4 REPRESENTATIVE MURT: We do?
5 MRS. MCCOOL: Yes.
6 REPRESENTATIVE MURT: Okay. That was my next
7 question, so thank you for that. Thank you.
8 One last question. Mrs. Turner, I don’t ask this
9 rhetorically. Why is it so difficult to move your daughter
10 from Bradford to Chester County? What can we do to
11 expedite this? What can we do to help your family?
12 MRS. TURNER: Why is it so difficult?
13 REPRESENTATIVE MURT: Yes, m a ’am.
14 MRS. TURNER: Because we can’t seem to get waiver
15 funding. They tell me there’s no money. So I guess
16 legally, she’s a resident of Chester County, although she
17 resides at Martha Lloyd.
18 REPRESENTATIVE MURT: Could I talk to you after
19 the hearing today and w e ’ll get some information to see if
20 we can help you?
21 MRS. TURNER: Absolutely. I ’d be thrilled.
22 MR. WHITEHEAD: Representative Murt, if I could
23 add to that, my name’s Ned Whitehead, and I ’m a friend of
24 the Turners. Part of the reason also is that the State was
25 looking at Caroline and they’re saying that all of her 75
1 needs are being right now living in the private ICF, and so
2 for her to be able to come out of the private ICF, the
3 Turners would have to remove her. They would have to go up
4 and bring her back home again. And because of all the
5 supports and services that she needs, that would be a
6 horrible thing. And then it goes back to what the
7 Representative said. Then it would be a crisis situation.
8 They would be in a crisis situation. Then they would be
9 able to get a waiver because both Mrs. Turner and her
10 husband are over 60, that would fall under the Older
11 Caregiver Initiative through the Waiting List Campaign, but
12 it’s that window, that time when you have to be in crisis
13 to be able to get the waiver that would be appropriate for
14 them to receive the services much more closer to home.
15 REPRESENTATIVE MURT: At the present time, is
16 your daughter in a group home or...
17 MRS. TURNER: She’s in an ICF. Martha Lloyd
18 Community Services has its own ICF. It’s 18 ladies in a
19 house. As I said, it’s three ladies to a bedroom. You
20 know, there’s not a lot of space there.
21 REPRESENTATIVE MURT: This is in Bradford,
22 Pennsylvania?
23 MRS. TURNER: It’s in Troy, Pennsylvania, which
24 is Bradford County.
25 MR. WHITEHEAD: And actually this young lady 76
1 sitting behind me in the peach was also a resident of that
2 inter-care facility. It’s a very antiquated facility.
3 There’s no integration into the community or very little
4 integration into the community. Their form of exercise the
5 one day that I was aware of, they walked around the
6 sheltered workshop, which is about the size of a three-bay
7 garage. They walked around that sheltered workshop for 40
8 minutes. That’s their level of exercise.
9 And Caroline, as Gretchen, the young lady sitting
10 behind me, are both very vibrant ladies who could really
11 add to the community that they’re in but living in this
12 private care facility, they really have very limited
13 ability to be out in the community and kind of expanding
14 their own lives and connections to the community.
15 REPRESENTATIVE MURT: Are there facilities in
16 Chester County, Mrs. Turner, or nearby in southeastern
17 Pennsylvania?
18 MRS. TURNER: Well, I don’t know about Chester
19 County but I believe Elwyn is in Delaware County, and I ’m
20 really interested in having Caroline in a Prader-Willi
21 group home because of her needs. Although she’s very able,
22 she needs a lot of supervision, and although she could do a
23 lot of things in the community, you can’t just turn her
24 loose into a daycare center watching little kids because
25 she might be eating their lunches or something. So it is 77
1 sort of a specialized problem, but yes, Elwyn has two
2 Prader-Willi group homes within a very reasonable distance
3 of our home.
4 REPRESENTATIVE MURT: Well, we're due on the
5 Floor at 1 o'clock so we're going to conclude our hearing,
6 but I just want to make a couple statements.
7 Clearly, I don't know if we resolved a whole lot
8 today but this discussion is ongoing, and we're going to
9 continue to have these hearings and raise issues and pursue
10 solutions and help families like your own. There's a
11 couple good things. Secretary Fred Lokuta and Secretary
12 Bev Mackereth are on board here. I've met with both of
13 them face-to-face in person and they are fully committed to
14 this mission. I guess maybe the best way to describe this
15 is that we have unlimited demands and finite resources, and
16 we're doing the very, very best we can to I guess care for
17 as many people as we possibly can, but we are absolutely
18 going to continue this discussion.
19 We are going to be having a meeting of the
20 Intellectual Disabilities Caucus probably in December or
21 maybe January. Secretary Mackereth has indicated that she
22 would like to attend and talk to our members. The
23 Intellectual Disabilities Caucus in the House is unique
24 because guests are invited, and if you have a question,
25 there's always an opportunity to talk to one of our 78
1 speakers, and they are as sincere as you can be about
2 answering questions and queries and so forth.
3 So thank you very much to our staff and thank you
4 very much to all of our guests who attended, and thank you
5 to my colleagues who attended today. So thank you very
6 much.
7
8 (The hearing concluded at 12:56 p.m.) 79
1 I hereby certify that the foregoing proceedings
2 are a true and accurate transcription produced from audio
3 on the said proceedings and that this is a correct
4 transcript of the same.
5
6 Florence Blantz
7 Transcriptionist
8 Diaz Data Services, LLC