COMMONWEALTH OF PENNSYLVANIA HOUSE OF REPRESENTATIVES
HUMAN SERVICES COMMITTEE HEARING
STATE CAPITOL HARRISBURG, PA
MAIN CAPITOL BUILDING ROOM 60, EAST WING
MONDAY, MARCH 31, 2 014 11:02 A.M.
PRESENTATION ON THE IMPACT OF THE OLMSTEAD DECISION ON PERSONS WITH INTELLECTUAL DISABILITIES AND THE WAITING LIST FOR SERVICES
BEFORE: HONORABLE GENE DiGIROLAMO, MAJORITY CHAIRMAN HONORABLE MINDY FEE HONORABLE DOYLE HEFFLEY HONORABLE TOM MURT HONORABLE BERNIE O ’NEILL HONORABLE BRAD ROAE HONORABLE JESSE TOPPER HONORABLE PAMELA DeLISSIO HONORABLE MADELEINE DEAN HONORABLE PATTY KIM HONORABLE STEPHEN KINSEY HONORABLE MARK PAINTER HONORABLE EDDIE DAY PASHINSKI
Pennsylvania House of Representatives Commonwealth of Pennsylvania 2
I N D E X
TESTIFIERS
~k ~k ~k
NAMEPAGE
MAUREEN CRONIN EXECUTIVE DIRECTOR, THE ARC PENNSYLVANIA...... 9
CELIA S. FEINSTEIN CO-EXECUTIVE DIRECTOR, INSTITUTE ON DISABILITIES, UCEDD; ASSOCIATE PROFESSOR OF URBAN EDUCATION, DEPARTMENT OF TEACHING AND LEARNING COLLEGE OF EDUCATION, TEMPLE UNIVERSITY...... 13
THOMAS KASHATUS PRESIDENT, WHITE HAVEN CENTER RELATIVES & FRIENDS ASSOCIATION...... 20
KAYE LENKNER COORDINATOR, SELF-ADVOCATES UNITED AS 1 ...... 25
CARL MANDO SELF-ADVOCATE...... 28
LEROY HAMMOND SELF-ADVOCATE...... 34
SAVANNAH LOGSDON-BREAKSTONE SELF-ADVOCATE...... 39
SHEILA MCLEOD MANAGER, CONSUMER/FAMILY SATISFACTION TEAM...... 44
ROBERT STAUFFER TEAM LEADER, CONSUMER/FAMILY SATISFACTION TEAM...... 47
SYLVIA GILLOM EMBREEVILLE CLASS MEMBER...... 50 3
I N D E X
TESTIFIERS (Cont’d)
~k k k
NAME PAGE
VIVIAN MCLEOD DIVERSITY MANAGER, VANGUARD, INC., AND FAMILY MEMBER...... 53
AUDREY COCCIA CO-FOUNDER, CO-EXECUTIVE DIRECTOR, VISION FOR EQUALITY...... 56
LISA TESLER POLICY COORDINATOR, PENNSYLVANIA WAITING LIST CAMPAIGN...... 66
NANCY MURRAY PRESIDENT, THE ARC OF GREATER PITTSBURGH...... 74
SUBMITTED WRITTEN TESTIMONY
~k ~k ~k
(See submitted written testimony and handouts online.) 4
1 P R O C E E D I N G S
2 ~k ~k ~k
3 MAJORITY CHAIRMAN DiGIROLAMO: Thank you, and to
4 everyone that’s here today, welcome to this hearing. Good
5 to see the familiar faces that are out there in the crowd.
6 Just a couple of ground rules when we start out,
7 the cameras are on. My understanding is that PCN is
8 covering this live, so I’d like everybody to be aware of
9 that.
10 And also we have a very ambitious agenda today,
11 so what I thought we might do is let everybody testify
12 first. Then at the end after everybody has testified, if
13 any of the Members have questions, if you could stick
14 around, then we'll bring you back up to answer some of the
15 questions if that would be okay.
16 And first, I'd like to give everybody, the
17 Members that are present here today, a chance just to say
18 hello and let you know where they're from.
19 Pam.
20 REPRESENTATIVE DeLISSIO: Good morning. Pam
21 DeLissio. I represent the 194th, which covers parts of
22 Philadelphia and Montgomery Counties.
23 REPRESENTATIVE TOPPER: My name is Jesse Topper.
24 I represent the 78th District, which covers parts of
25 Bedford, all of Fulton, and parts of Huntington County. 5
1 REPRESENTATIVE MURT: Tom Murt, 152nd District.
2 I represent Philadelphia and Montgomery County.
3 MAJORITY CHAIRMAN DiGIROLAMO: Gene DiGirolamo,
4 Chairman of the Committee. I ’m from the 18th Legislative
5 District in Bucks County.
6 REPRESENTATIVE PASHINSKI: Good morning,
7 everyone. Eddie Day Pashinski, 121st District, Luzerne
8 County.
9 MAJORITY CHAIRMAN DiGIROLAMO: And I know some of
10 the other Members of the Committee will be coming in and
11 out; it’s a very busy morning up here in Harrisburg on
12 Monday.
13 I just have a couple opening comments before we
14 get started.
15 In 1999 the Intellectual Disabilities Waiting
16 List started and it provides vital information for planning
17 not only for the individual but also for the local and
18 State level. That same year in ’99 a landmark case known
19 as the Olmstead Decision, the Supreme Court held under the
20 Americans with Disabilities Act States are required to
21 place qualified individuals with mental disabilities in
22 community settings rather than institutions.
23 While the Olmstead Decision impacts all people
24 with disabilities, today’s hearing will focus on the needs
25 and issues of individuals with intellectual disabilities 6
1 and where Pennsylvania is in complying with this Federal
2 law.
3 I know there’s an awful lot of talk of the
4 waiting list and I think w e ’re all very, very grateful that
5 Governor Corbett in his budget address said that we’re
6 going to put 20-some million dollars into the waiting list,
7 and I think that is really, really good news. But in my
8 mind I hope the goal is someday to eliminate that waiting
9 list. So I think that should be everyone’s goal.
10 But while w e ’re grateful for that good news, I
11 would just like to point out some other facts and some
12 other challenges that we have. We’re also sitting here in
13 the third year of 10 percent cuts for Human Services, $84
14 million a year, so that’s $252 million that we’re down that
15 the counties get for Human Services.
16 We’re also I think burdened with this Human
17 Services Block Grant that 30 counties are in now. I think
18 that creates a lot of instability for people trying to play
19 with intellectual disabilities and for the providers to
20 provide the services also.
21 And I just want to point out the report that was
22 issued on the Human Services Block Grant by the Department
23 of Public Welfare recently. In my mind I think this report
24 is incomplete. There’s nothing about what happened in the
25 prior years before the block grant to compare to so we have 7
1 nothing to compare the information in this report. It’s a
2 glowing report but we have nothing to compare that
3 information with. And from my calculations, I believe that
4 the intellectual disabilities lines with the block grant
5 have lost somewhere between $6.2 and $6.4 million in the
6 year 2012/2013. That’s money that should have gone to the
7 line items for people with intellectual disabilities that
8 were shifted into the other areas of the Human Services
9 Block Grant.
10 So I’d just like to point out those things. And
11 I know we’re here today to talk about the waiting list and
12 the good things that it does.
13 And I would also like to recognize the presence
14 of Representative Bernie O ’Neill from Bucks County and also
15 Representative Steve Kinsey from Philadelphia County, also
16 Representative Mindy Fee from Lancaster County. Do you
17 want to say hello, Mindy, just let us know where you’re
18 from?
19 REPRESENTATIVE FEE: Hi. Sorry I’m a little
20 tardy. I ’m in Lancaster in the northern part from Mount
21 Joy Township [inaudible] area. Thank you.
22 MAJORITY CHAIRMAN DiGIROLAMO: Representative
23 Dean.
24 REPRESENTATIVE DEAN: Good morning. Thank you,
25 Mr. Chairman. I’m Madeleine Dean from Montgomery County. 8
1 MAJORITY CHAIRMAN DiGIROLAMO: Okay. Let’s go to
2 the first panel. That will be Maureen Cronin, who is the
3 Executive Director of the Arc of Pennsylvania and Celia
4 Feinstein, who is the Co-Executive Director, Institute on
5 Disabilities, Associate Professor of Urban Education,
6 Department of Teaching and Learning College of Education,
7 Temple University.
8 Good morning. Welcome. And whenever you’re
9 ready, you can begin your testimony.
10 MS. CRONIN: Good morning. It’s really quite an
11 honor to be in front of the Arc of Pennsylvania’s 2013
12 Legislator of the Year awardee and the 2014 Legislator of
13 the Year awardee, Representative Murt and Representative
14 DiGirolamo. So, wonderful.
15 Thank you for the opportunity to provide
16 testimony regarding Pennsylvania’s implementation of the
17 Supreme Court’s Olmstead Decision. I sit here in a unique
18 position. I worked for the Commonwealth for many years. I
19 worked at Pennhurst Center and Embreeville Center and I’m
20 also parent of a child who had very, very severe
21 disabilities and was medically fragile. And now I’m a
22 full-time advocate.
23 My testimony will provide background information
24 on Olmstead v. L.C., a case of discrimination against
25 people with intellectual disabilities. The remaining 9
1 speakers will focus on Pennsylvania’s implementation of the
2 decision and what should be the next steps in Pennsylvania.
3 I am extremely honored to speak before you today alongside
4 Pennsylvania’s most committed advocates for persons with
5 disabilities.
6 The Arc of Pennsylvania is part of The Arc U.S.,
7 the largest disability rights organization in the nation,
8 advocating for and serving people with intellectual and
9 developmental disabilities and their families. We
10 encompass all ages and many types of disabilities,
11 including autism, Down syndrome, and other developmental
12 disabilities.
13 For 65 years, The Arc of Pennsylvania has worked
14 to ensure that children and adults with intellectual and
15 developmental disabilities receive the supports and
16 services they need, are included in their community, and
17 have control over their own lives. The Arc of Pennsylvania
18 has 34 chapters and 7,000 members, and we are run by people
19 with intellectual disabilities and their families.
20 The Olmstead case was brought in 1995 by the
21 Atlanta Legal Aid Society on behalf of Lois Curtis and
22 Elaine Wilson. Tommy Olmstead was the Commissioner for the
23 Georgia Department of Human Resources. Lois Curtis and
24 Elaine Wilson were admitted into the psychiatric unit in
25 the State-run Georgia Regional Hospital. These women with 10
1 intellectual disabilities and mental illness completed
2 their treatment, and staff at the hospital recommended that
3 they be discharged to community-based programs, but there
4 was a waiting list for community services in Georgia, just
5 like there is here in Pennsylvania. Olmstead v. L.C. rose
6 to the Supreme Court when the Georgia Department of Human
7 Services appealed a decision in the 11th Circuit that it
8 violated Title II of the Americans with Disabilities Act's
9 integration mandate.
10 The integration mandate is a regulation issued by
11 the U.S. Department of Justice requiring public entities to
12 administer services, programs, and activities in the most
13 integrated setting appropriate to the needs of qualified
14 individuals with disabilities. Georgia asked the Supreme
15 Court to decide whether the Americans with Disabilities Act
16 requires the State to provide treatment and habilitation
17 for persons with intellectual disabilities in a community
18 setting when appropriate treatment and habilitation can
19 also be provided to them in a State institution.
20 On June 22, 1999, in a 6 to 3 landmark opinion,
21 the Supreme Court affirmed that the Americans with
22 Disabilities Act did in fact prohibit needless segregation
23 of individuals with disabilities. "Institutional placement
24 of persons who can handle and benefit from community
25 settings perpetuates unwarranted assumptions that persons 11
1 so isolated are incapable of or unworthy of participating
2 in community life. Confinement in an institution severely
3 diminishes the everyday life activities of individuals,
4 including family relations, social contacts, work options,
5 economic independence, educational advancement, and
6 cultural enrichment.” In addition, the Court decided that
7 the State must move the plaintiffs to a community-based
8 program.
9 Title II of the ADA requires that public entities
10 make reasonable accommodations to avoid discrimination on
11 the basis of disability unless those modifications would
12 entail a fundamental change of the State’s services. The
13 integration mandate requires States to develop
14 comprehensive plans to end unnecessary institutionalization
15 at a reasonable pace with the goal of integrating
16 individuals with disabilities into mainstream society to
17 the fullest extent possible.
18 In support of States’ efforts, President George
19 W. Bush issued an Executive Order -- the Community-Based
20 Alternatives for Individuals with Disabilities, or the
21 Olmstead Executive Order -- on June 18, 2001, in which he
22 extended application of the Supreme Court’s Olmstead
23 Decision to all Americans with disabilities and called upon
24 selected Federal agencies, including the U.S. Department of
25 Labor, to help support governors in their implementation of 12
1 the Olmstead Decision.
2 More so now but even 15 years ago at the time of
3 the decision, the broad support of community integration
4 and recognition for the cost-effectiveness of providing
5 services in the community instead of institutional settings
6 was well established. We had the Pennhurst Longitudinal
7 Study with robust data proving that individuals have better
8 outcomes living in community settings rather than
9 congregate care. My colleague here, Celia Feinstein, was
10 an investigator on the study.
11 In the early ’70s, The Arc of Pennsylvania, and
12 as I told you, led by people with disabilities and their
13 families, led the movement to close State institutions
14 where individuals with intellectual disabilities lived
15 their lives. The Arc was a plaintiff in the Halderman v.
16 Pennhurst State Hospital case and in the Western Center’s
17 Richard C v. Snyder. I know that the founders of the Arc
18 of Pennsylvania who fought so hard to assure a better
19 future for their children never, ever thought that 40 years
20 later we would still have people living in institutions.
21 States are required to have Olmstead Plans,
22 including measurable objectives demonstrating how the
23 Olmstead Decision will be implemented in their State.
24 Frederick L v. DPW cites language in the Olmstead Decision
25 as its basis for what States’ implementation of Olmstead 13
1 should look like. The language in the Frederick L
2 decisions gives guidance as to what in that case the court
3 wanted to see in an Olmstead Plan. In short, benchmarks -
4 in terms of numbers of individuals -- and timelines set
5 forth in such a way that compliance with Olmstead could be
6 assessed by the court. The Olmstead Plan requires
7 reasonable, measurable benchmarks and timelines for people
8 to leave institutions. To our knowledge, Pennsylvania does
9 not have such a plan.
10 In closing, I want to thank you for taking the
11 time to understand the importance of the Olmstead Decision
12 for Pennsylvanians and for your leadership in service to
13 all those who receive services from the Department of
14 Public Welfare, hopefully the Department of Human Services
15 shortly. Thank you.
16 MAJORITY CHAIRMAN DiGIROLAMO: Thank you,
17 Maureen.
18 Celia.
19 MS. FEINSTEIN: Good morning. Good morning,
20 Chairman DiGirolamo. I thank you for the opportunity to
21 testify before you today. My name is Celia Feinstein and I
22 am the Co-Executive Director of the Institute on
23 Disabilities at Temple University.
24 The Institute is one of 67 centers throughout the
25 country funded by the Federal Developmental Disabilities 14
1 Assistance and Bill of Rights Act. We are Pennsylvania’s
2 only University Center for Excellence, and although our
3 primary location is on Temple’s main campus in north
4 Philadelphia, we are a statewide program and have a
5 satellite office in Wexford, PA, just north of Pittsburgh.
6 Our charge through the DD Act is to provide
7 community training and technical assistance,
8 interdisciplinary training in order to prepare the next
9 generation of professionals, research and dissemination,
10 all on behalf of people with intellectual and developmental
11 disabilities and their families. We have been
12 Pennsylvania’s University Center since 1973 and celebrated
13 our 40th anniversary last year.
14 One of the core functions of the University
15 Center is to be a resource to the disability community in
16 producing information and in interpreting information that
17 already exists. It is in that capacity that I stand before
18 you today. I have been asked to present the data
19 describing how Pennsylvania is faring with regard to its
20 support for its citizens with intellectual disabilities
21 since the Olmstead Decision of 1999.
22 In order to do this, I’ve examined several
23 resources. Dr. David Braddock and his colleagues at the
24 Coleman Institute at the University of Colorado at Boulder
25 produce a seminal work about every two years entitled, "The 15
1 State of the States in Developmental Disabilities.” "The
2 State of the States" is a comparative nationwide
3 longitudinal study of public financial commitments and
4 programmatic trends in developmental disabilities services
5 and supports. The project’s activities include analyzing
6 developmental disabilities financial and programmatic
7 trends in each State and the District of Columbia.
8 The following data came from the most recent
9 "State of the States in Developmental Disabilities 2013:
10 The Great Recession and its Aftermath." I’m going to use
11 the phrase intellectual and developmental disabilities, IDD
12 shorthand.
13 With regard to public IDD spending for community
14 services from the years 2009 through 2011, nationally
15 funding increased by 3.2 percent. In Pennsylvania, funding
16 decreased by 5.1 percent. Pennsylvania is 39th in funding
17 growth from 2009 to 2011, all 50 States and the District of
18 Columbia reporting.
19 In terms of fiscal effort for IDD services, the
20 percent change from FY 2009 to ’11 in Pennsylvania the cash
21 spent per $1,000 went from $5.72 in 2009 to $5.43 in 2011,
22 a 5 percent decrease in spending. Nationally, cash spent
23 per $1,000 ranged from $4.41 in 2009 to $4.47 in 2011, a 1
24 percent increase in spending. Pennsylvania ranks 42nd in
25 fiscal effort related to IDD services during this period. 16
1 If we look at people with intellectual and
2 developmental disabilities in out-of-home residential
3 settings by the size of the settings in FY 2011,
4 Pennsylvania is ranked 28th nationally on the percent of
5 people with IDD in out-of-home settings who reside in one-
6 to-six person settings. We’re ranked 32nd nationally on
7 the percentage of total people with IDD in out-of-home
8 settings who reside in settings with seven or more people.
9 The utilization rate per 100,000 citizens of the general
10 population for all IDD out-of-home placements is 203 in
11 Pennsylvania, 198 nationally.
12 The average daily residents of our State-operated
13 16-plus IDD institutions from 2009 to ’11, nationally there
14 was a 12 percent decrease in those numbers. Pennsylvania
15 experienced a 6 percent decrease ranking us 32nd
16 nationally.
17 For residents with intellectual and developmental
18 disabilities in nursing facilities, there was no change in
19 Pennsylvania. Nationally, there was a 3 percent decrease.
20 Also, in 2013, U.S. Senator Tom Harkin, Chairman
21 of the Senate Health, Education, Labor and Pensions
22 Committee, published a document entitled, "Separate and
23 Unequal: States Fail to Fulfill the Community Living
24 Promise of the Americans with Disabilities Act."
25 Specifically, Senator Harkin referred to the Olmstead 17
1 Decision.
2 The monograph begins, "Following a hearing last
3 year before this committee to assess the progress that has
4 been made to implement the Olmstead Decision, Chairman
5 Harkin sent letters to the Governors of all 50 States
6 requesting information on Home and Community-Based
7 Services. The purpose of the Chairman’s request was to
8 clarify whether States are ensuring that all populations of
9 individuals with disabilities have the opportunity to live
10 independently, while also providing the necessary services
11 and supports in a cost-effective manner. To that end, the
12 Chairman asked six specific questions to gather information
13 about different aspects of the Olmstead initiative." And
14 you have those six questions.
15 "Seventeen States did not respond in any way to
16 the Chairman’s letter, despite repeated requests to do so.
17 These states are Florida, Georgia, Idaho, Indiana, Kansas,
18 Louisiana, Maine, Montana, Nevada, New Jersey, North
19 Carolina, North Dakota, Ohio, Oklahoma, Pennsylvania, South
20 Carolina, and Utah. Their failure to respond creates the
21 impression that these States are not prioritizing the
22 integration mandate of the ADA."
23 The report continues, "With respect to the States
24 that did not respond, the Chairman generally found that
25 many state leaders and Medicaid directors are working hard 18
1 to provide more Home and Community-Based Services in an era
2 of rising costs and growing populations. However, most
3 States continue to approach community living as a social
4 welfare issue, not as a civil rights issue.
5 With few exceptions, State leadership appears not
6 to view the provision of Home and Community-Based Services
7 as a means to guarantee that individuals with disabilities
8 are able to exercise their civil rights as citizens by
9 receiving supports that allow them to make their own
10 decision and fully participate in the lives of their
11 communities.
12 Much of the problem appears to be based on
13 concerns about adopting options that require States to
14 serve all individuals eligible for a particular set of
15 services. An additional problem is a continued focus on
16 providing care in settings that are 'less institutional'
17 but also are not the most integrated settings possible.
18 These setting do not fully realize the integration mandate
19 of providing individuals with disabilities the option to
20 live at home.
21 Finally, it's very difficult to assess the
22 States' progress because of a lack of consistent
23 classification, tracking, and reporting of both eligible
24 populations and populations served."
25 Although Pennsylvania did not respond to the 19
1 survey, there were some data that were available. In a
2 chart assessing the variation in State spending on Home and
3 Community Based Services as a percentage of long-term
4 services and supports, Pennsylvania ranks 42nd.
5 In a comparison of States’ changes in those under
6 65 living in nursing homes, Pennsylvania had a 26 percent
7 increase in that population during that period. The
8 average increase nationally was 15.97 percent.
9 Pennsylvania has the 19th highest percentage of individuals
10 less than 65 years old living in nursing homes.
11 Approximately 56 percent of all IDD expenditures
12 are for the more than 26,000 people supported in Home and
13 Community-Based Services; 22 percent is expended for the
14 approximately 1,000 people living in State-run intermediate
15 care facilities for people with intellectual disabilities.
16 In addition, of the more than 200,000 people with IDD in
17 Pennsylvania, according to Braddock et al., 71 percent live
18 at home with families.
19 I have attached some of the charts from the
20 Braddock data for the United States and for Pennsylvania to
21 my testimony. If you have any questions, please don’t
22 hesitate to contact me. Thank you for your time.
23 MAJORITY CHAIRMAN DiGIROLAMO: Okay. Celia,
24 Maureen, thank you very much. I appreciate the testimony.
25 And panel number two, Tom Kashatus, who is the 20
1 President of White Haven Center Relatives & Friends
2 Association, Inc.; Kaye Lenkner, Coordinator, Self
3 Advocates United as 1; Carl Mando, who is a Self-Advocate;
4 Leroy Hammond, Self-Advocate; and Savannah Logdson, who is
5 also a Self-Advocate. We welcome all of you to the hearing
6 today.
7 I would also like to recognize the presence of
8 Representative Patty Kim and also Representative Doyle
9 Heffley.
10 Okay. Whenever you’re ready, you can begin. I ’m
11 not sure who’s going first.
12 MR. KASHATUS: Before I proceed, I want to thank
13 Majority House Chair Gene DiGirolamo and the Members of the
14 House Human Services Committee for this opportunity to
15 speak regarding Olmstead for my daughter Maria and 11 other
16 residents at White Haven Center for whom I am honored and
17 fortunate to represent with the right of guardianship and
18 who do not have families and the ability to speak for
19 themselves. I especially want to thank Representative
20 Toohil and her staff for guiding me to Liz Yarnell, who set
21 the parameters for me to follow the get to this point.
22 Although I am grateful for this opportunity, it’s
23 unfortunate that after so many years since the Olmstead
24 Decision, we are still debating what such a clear decision
25 says and means. 21
1 As I will explain, Olmstead simply supports my
2 daughter’s right to call White Haven Center home. I am
3 thankful to the State of Pennsylvania for the high quality
4 professional care and services that are given to Maria, my
5 personal hero, who is a resident of White Haven Center, a
6 State facility for the intellectually disabled. I will
7 forever be indebted to our taxpayers for their financial
8 support to Maria and my family during our lifetimes.
9 I just want to visit my daughter as much as I
10 possibly can during my life and my retirement. However,
11 I ’m tired. I ’m tired of going to meetings. I ’m worn out.
12 I’m worn out from growing old. I’m overwhelmed. I’m
13 overwhelmed with trying to learn the ropes associated with
14 the intellectual disability system. And I ’m exhausted.
15 I’m exhausted from the pressure of contrary advocacy groups
16 -- the DOJ, the DRN, the ARC -- for the past 20 years
17 trying to interpret the Supreme Court Olmstead Decision as
18 a means to close all State intermediate care facilities for
19 the intellectually disabled. Also at the same time, they
20 stipulate that my daughter and her lifelong friends at
21 White Haven Center can be better served by private
22 facilities in smaller, unlicensed settings by staff
23 unfamiliar and untrained to meet their complex needs.
24 As a member of my local crime watch, and I am
25 involved in a lot of community volunteerism, I note that 22
1 these are the same communities where drugs and crime
2 flourish, racial hatred continues to exist, gangs establish
3 their ground rules, and people who are different are still
4 not accepted.
5 Usually when controversial issues arise within
6 the intellectual disability community, Olmstead always
7 seems to be the crux of the controversy. It’s no wonder
8 that this highly important House Committee is finally
9 taking testimony specifically centering on the Olmstead
10 Decision. The large advocacies have their own
11 interpretation of Olmstead, but I, my family, and my
12 supporters believe that the opinions supported in the
13 decision itself are the most sensible and fairest as they
14 emphasize "choice."
15 I am a member of the VOR, a national advocacy
16 organization which supports choice. Attached to this
17 testimony are papers from the VOR:
18 1) Don’t be misled about what the Olmstead Supreme
19 Court Decision says.
20 2) Olmstead supports residential choice."
21
22 Due to time restraints, I will furnish copies of
23 these documents along with my testimony for your review.
24 However, I would like to reiterate four comments from these
25 documents: 23
1 1) What Olmstead is not: Olmstead is not a Federal
2 law or statute.
3 2) How Olmstead is misused: In support of their
4 objectives to downsize and close ICFs, certain
5 advocates are emphasizing portions of the
6 Court’s opinion regarding "unjustified
7 institutionalization" and ignoring important
8 parts of the Court’s decision.
9 3) The Olmstead Decision supports facility-based
10 institutional care for those individuals whose
11 severe impairments require close care found in
12 such settings.
13 4) A plurality of the justices noted, "As already
14 observed by the majority the ADA is not
15 reasonably read to impel States to phase out
16 institutions, placing patients in need of close
17 care at risk. Each disabled person is entitled
18 to treatment in the most integrated setting
19 possible for that person, recognizing on a
20 case-by-case basis that that setting may be an
21 institution."
22
23 Being an intervenor at the onset of the Benjamin
24 litigation I was sad to learn that during the early stages
25 that the individuals who most likely -- and I know that for 24
1 a fact -- appeared on the top of the list for transfer into
2 the community were those residents who had no or very
3 little family contact and could not speak for themselves.
4 Choice was far from a reality here. And being responsible
5 as President of the White Haven Center Relatives & Friends
6 and a White Haven Center Trustee, I was dumbfounded and
7 dismayed to learn from a county caseworker that Luzerne
8 County Human Services does not offer state ICF as a
9 provider of services for Pennsylvania residents in need of
10 services.
11 This is one factor that has resulted in an
12 overwhelming and expanding waiting list of people seeking
13 services. It's tragic when a family needs emergency
14 services, which may involve life or death, and are told by
15 a provider that they have 30 days to provide the services,
16 normally hundreds of miles away like in Pittsburgh or
17 Philadelphia or New Jersey.
18 My wife and I remember the "Five-Year Plan" and I
19 go on here -- I see I'm being poked now because of my time
20 limit, but it's in my testimony here. And I just want to
21 say that the State of Virginia passed legislation down
22 there within their Senate and their House of
23 Representatives. There were no "no" votes or anything and
24 it's on Governor McAuliffe's desk for signature and all,
25 and I have that disclosed in here as to what that entails. 25
1 And the State Centers or training centers in Virginia very
2 much liked what was being passed down there, and I hope
3 that you fellows and ladies can take a look and see what
4 that was all about.
5 But I just want to say here that let’s have the
6 patience to listen to all advocacy groups to make the
7 system better for the quality of life of all those in need,
8 but keep in mind to have the courage and compassion, when
9 making tough decisions and remembering that choice is
10 imperative and all reasonable choices should be on the
11 table. As the saying goes, one size does not fit all.
12 I have a biography of my daughter included in my
13 testimony here. You should have it in your packet there.
14 And I guess for now that’s it. I wish I could go
15 on for another 10 minutes, but I guess I don’t have that
16 opportunity.
17 MAJORITY CHAIRMAN DiGIROLAMO: Okay.
18 MR. KASHATUS: Thank you, Mr. Chairman.
19 MAJORITY CHAIRMAN DiGIROLAMO: Thank you, Tom.
20 And I think Kaye is next.
21 MS. LENKNER: Good morning. Thank you for
22 allowing me to be here to speak today.
23 I am the statewide Project Coordinator of Self
24 Advocates United as 1, which is a Pennsylvania group of
25 people with intellectual and/or developmental disabilities, 26
1 and the group has the mission to support the self-advocacy
2 of people with disabilities for positive impact in our
3 communities and in people’s lives. And my job is not to
4 speak for the others, but it’s to support them to speak up
5 for themselves. I do this through listening to what they
6 want to do and say and providing the technical, logistical,
7 and administrative support that enables them to do that.
8 Our advocacy work is funded through a grant from
9 the Pennsylvania Developmental Disabilities Council.
10 Through that and other funding, we have visited each of the
11 five State Centers several times. Residents at the State
12 Centers have been active participants in our monthly
13 teleconferences, as long as they are held during the
14 daytime hours when the disability rights advocate at each
15 site is able to facilitate the call.
16 One of our rounds of visits to all the five State
17 Centers was funded by the Office of Developmental Programs.
18 We were asked to provide self-advocacy skills training. We
19 met with residents at each center, and during the morning,
20 talked to them about their civil rights to speak up and
21 shared some skills about speaking up. In the afternoon we
22 had a question-and-answer session with five Self-Advocate
23 United as 1 board members, who are all people with
24 disabilities, who live, work, and play fully in community.
25 The questions we received showed us that the 27
1 residents, staff, and family members really have no idea of
2 how folks can be supported to live fully in community.
3 Questions such as "Will I be able to see my family?”, "Will
4 I be able to leave my house?", "How will I get my meals?",
5 "Who will take me shopping?", "Will I be able to have a
6 wheelchair?", and many others showed that residents and
7 staff are truly uninformed.
8 I can tell you that I have never heard a resident
9 say this is where I want to be; I want to stay here. I
10 have heard them say this is what my family wants or says is
11 best for me.
12 I am honored to have with me today Savannah
13 Logsdon-Breakstone, an autistic young lady who also has
14 supports for mental health issues. Savannah worked with
15 self-advocates from all over the country on a national
16 paper defining "true community."
17 I’m delighted that Carl Mando and Leroy Hammond
18 are eager to share with everyone a little bit of what their
19 lives were like at Polk Center, but more importantly, what
20 their lives are like now, fully immersed in true community
21 with significant supports.
22 And I want to thank you for sharing your valuable
23 time to learn more about the promises we have yet to keep
24 and the unfinished business of honoring the Olmstead Act.
25 And with the Committee’s permission, I met these 28
1 two gentlemen about a year-and-a-half ago---
2 MR. HAMMOND: Over two years.
3 MR. MANDO: Yes.
4 MS. LENKNER: Over two years? Leroy is
5 correcting me, over two years ago. And I met with them
6 last week to learn about their testimony. And with the
7 Committee’s permission, I’d like them to be able to give
8 their testimony through questions and answers from me. Is
9 that acceptable?
10 MAJORITY CHAIRMAN DiGIROLAMO: That’s fine. Yes.
11 MS. LENKNER: Wonderful. Okay. So, Carl, I
12 think you’re first and Savannah has got your microphone all
13 set for you. Would you like to tell us who you are?
14 MR. MANDO: Carl Mando.
15 MS. LENKNER: Carl Mando.
16 MR. MANDO: Yes.
17 MS. LENKNER: And where do you live, Carl, near
18 what big city?
19 MR. MANDO: Erie.
20 MS. LENKNER: By Erie, Pennsylvania.
21 MR. MANDO: Erie, Pennsylvania.
22 MS. LENKNER: Okay, Carl. Carl, you lived at
23 Polk Center. How old were you when you went there?
24 MR. MANDO: I don’t know.
25 MS. LENKNER: You told me last week you were a 29
1 young kid.
2 MR. MANDO: I was a young kid.
3 MS. LENKNER: Yes.
4 MR. MANDO: [inaudible] and Woodside and
5 Northside. I went over to that cottage.
6 MS. LENKNER: So you were just naming some of the
7 cottages that you lived in while you were there?
8 MR. MANDO: Yes, I was.
9 MS. LENKNER: Okay. And about how long did you
10 live there? You told me last week it was about 30 years.
11 MR. MANDO: Thirty years, yes.
12 MS. LENKNER: Yes. And how long since you’ve
13 been out?
14 MR. MANDO: I ’ve been out about 30 years.
15 MS. LENKNER: About 30 years as well.
16 MR. MANDO: Thirty years out.
17 MS. LENKNER: H e ’s just a young guy here.
18 MR. MANDO: Young guy, yes.
19 MS. LENKNER: Okay. So, Carl, tell me what is
20 your life like now? What are some of the things you do?
21 MR. MANDO: I go to art class--
22 MS. LENKNER: To art class.
23 MR. MANDO: -- and I go shopping.
24 MS. LENKNER: Shopping.
25 MR. MANDO: I go shopping and I go somewhere I go 30
1 shopping and buy something like clothes, tapes, CDs.
2 MS. LENKNER: Clothes and tapes and CDs?
3 MR. MANDO: CDs, yes. And I ’ve got a lot of
4 records in my room. I play records all around the ceiling.
5 I go all around the ceiling records, full records.
6 MS. LENKNER: Okay.
7 MR. MANDO: Yes.
8 MS. LENKNER: Now, you told me you like to go to
9 races?
10 MR. MANDO: Go to races in the summertime. Don
11 took me to the races. We go to the races in the
12 summertime. Yes, we do that.
13 MS. LENKNER: And you like to go to the beach?
14 MR. MANDO: Go to the beach, go ride around the
15 beach, go around and see all the stores, go around and take
16 a ride down to the beach.
17 MS. LENKNER: Okay. And you do what else? Let’s
18 see. What else did you tell me last week? You go see the
19 banjo players practice?
20 MR. MANDO: I go and I see the banjo on Tuesday
21 night. I go see the banjo.
22 MS. LENKNER: And one of the things you told me
23 when you lived at Polk Center, you said your family came to
24 visit you only one time. Is that right?
25 MR. MANDO: Yes. I haven’t seen my dad in a long 31
1 time. They came out to visit me the one day. The next day
2 they didn't. I stayed there and they came up once, my dad.
3 MS. LENKNER: Only one time--
4 MR. MANDO: One time, yes.
5 MS. LENKNER: -- did you have people visit. But
6 since you've been out, you've been seeing a lot more of
7 your family---
8 MR. MANDO: Yes, I see a lot of--
9 MS. LENKNER: -- your aunts and uncles?
10 MR. MANDO: -- uncles and aunts. I see Aunt
11 Jeannie, Heidi, all them. They're all in Erie. I can see
12 them.
13 MS. LENKNER: So now that you're in the
14 community, you get to see your family?
15 MR. MANDO: Yes. I can see them in the community
16 now. I live [inaudible] city.
17 MS. LENKNER: And, Carl, when we were talking
18 about how you live now and I asked you if you lived in a
19 group home, what did you tell me? Do you remember? You
20 told me you don't call it that. What do you call it?
21 MR. MANDO: We don't call it a group home. We
22 call it a lodge.
23 MS. LENKNER: And you just called it home is what
24 you told me.
25 MR. MANDO: Yes, a lodge. 32
1 MS. LENKNER: Home at large.
2 MR. MANDO: Lodge, yes.
3 MS. LENKNER: Okay. Was there anything else you
4 would like to tell the Committee, Carl? They have a lot of
5 information. We gave it to them in writing about what your
6 life was like there at Polk Center, but did you want to
7 talk about that or are you good just letting them know what
8 life is like now?
9 MR. MANDO: Talking about girls.
10 MS. LENKNER: Oh, Carl wanted to tell you a
11 little bit about girls when he was at Polk Center.
12 MR. MANDO: I was in Polk. I go there to see the
13 girls on Saturday and Saturday I go. Down there I walked
14 back and then I go fishing there, fishing, a fishing hole
15 there. And I go there.
16 MS. LENKNER: Were you allowed to go visit the
17 girls?
18 MR. MANDO: Yes, I was allowed to see the girls.
19 MS. LENKNER: When you were at Polk Center were
20 you allowed to go visit---
21 MR. MANDO: Yes.
22 MS. LENKNER: -- or did you tell me you had to
23 sneak out?
24 MR. MANDO: I go walk over there, yes. I sneak
25 out. I walk over and I walked back. 33
1 MS. LENKNER: You walked over and you walked
2 back.
3 MR. MANDO: That’s why I wanted to see how
4 they’re getting along, the girls, see how they’re get
5 along. Yes.
6 MS. LENKNER: You told me you wanted to visit
7 Polk Center again---
8 MR. MANDO: Yes.
9 MS. LENKNER: -- and you went there. What
10 happened?
11 MR. MANDO: They won’t let us in.
12 MS. LENKNER: They wouldn’t let them in. They
13 told you there were officials there--
14 MR. MANDO: Officials there.
15 MS. LENKNER: -- and they didn’t want you to
16 talk---
17 MR. MANDO: No.
18 MS. LENKNER: -- to the officials?
19 MR. MANDO: Officials, no.
20 MS. LENKNER: Yes.
21 MR. MANDO: And a guy was shot there.
22 MS. LENKNER: They do.
23 MR. MANDO: Yes, was shot.
24 MS. LENKNER: Okay. Ned is waving at me that
25 it’s Leroy’s turn. 34
1 MR. MANDO: Okay.
2 MS. LENKNER: Is that okay that we go to Leroy?
3 MR. MANDO: Yes, okay.
4 MS. LENKNER: All right. All right, Carl, thank
5 you.
6 MR. MANDO: You’re welcome. Do you need this?
7 MS. LENKNER: Well, yes, actually--
8 MR. MANDO: Okay.
9 MS. LENKNER: -- that would be good.
10 MR. HAMMOND: My name is Leroy.
11 MS. LENKNER: Hang on Leroy because you’re on the
12 camera so you -- he was telling me he did not need a
13 microphone but we told him that he just might so--
14 MR. HAMMOND: My name is Leroy. I was in Polk
15 Center 32 years. When I was in Polk, they didn’t do
16 nothing for me. When I got out of Polk, I got my surgery
17 done here in Erie, Pennsylvania. My doctor’s name was
18 Dr. Lusiwania [ph]. I was in the operating room two hours
19 in the operating room. When I woke up and they said you’re
20 going to be in the hospital and they put me in one of them
21 beds that move me back and forth and I was in pain.
22 MS. LENKNER: Right. So, Leroy, can I explain
23 what you were sharing about?
24 MR. HAMMOND: Yes.
25 MS. LENKNER: Leroy shared that he was Polk 35
1 Center for 32 years, right?
2 MR. HAMMOND: Thirty-two years, yes.
3 MS. LENKNER: And all that time your leg was
4 twisted and bent underneath---
5 MR. HAMMOND: Bent underneath my seat.
6 MS. LENKNER: -- and nothing was ever done while
7 you were at Polk Center about that?
8 MR. HAMMOND: No, no.
9 MS. LENKNER: It was when you left Polk Center?
10 MR. HAMMOND: Right. I got down here in Erie,
11 Pennsylvania.
12 MS. LENKNER: In Erie, right. And so, Leroy,
13 you, too, went there as a young child.
14 MR. HAMMOND: Well, they put me in the cage. I
15 stayed in the cage.
16 MS. LENKNER: You stayed in the cage?
17 MR. HAMMOND: Wooden cage.
18 MS. LENKNER: A wooden cage when you were a young
19 child?
20 MR. HAMMOND: We [inaudible] talk to you now,
21 I'll get caught. You come with me. You get your hair cut
22 off, cut your hair off, put you in stripes, no tie, nothing
23 on. You had to wear stripes like what you do in prison.
24 MS. LENKNER: Okay. You had to wear stripes like
25 people do in prison? 36
1 MR. HAMMOND: Yes.
2 MS. LENKNER: And that was a long time ago at
3 Polk Center?
4 MR. HAMMOND: Yes, it was rough. Boy, I tell
5 you.
6 MS. LENKNER: It was rough. And you’ve been out
7 about how long?
8 MR. HAMMOND: How long?
9 MS. LENKNER: It’s been about 30 years is what
10 you told me, about 30, 37 years?
11 MR. HAMMOND: Thirty-seven years.
12 MS. LENKNER: Okay.
13 MR. HAMMOND: That’s I go home. I ’ve still been
14 home.
15 MS. LENKNER: And you live in community now?
16 MR. HAMMOND: Yes, I do. I live with my friend
17 Vickie in Erie, Pennsylvania.
18 MS. LENKNER: Right. You do life share with
19 Vicki, right?
20 MR. HAMMOND: And they’re all nice people there.
21 MS. LENKNER: Okay. And you wanted me to make
22 sure they knew that you had a job, and we apologize that
23 wasn’t in the testimony.
24 MR. HAMMOND: Yes, I got a job.
25 MS. LENKNER: They surprised me with that. 37
1 MR. HAMMOND: And guess where I work at? I work
2 at Red Lobster.
3 MS. LENKNER: Red Lobster for how many years?
4 MR. HAMMOND: Ten years.
5 MS. LENKNER: And you had a full-time job there?
6 MR. HAMMOND: Yes.
7 MS. LENKNER: All right. So you were paying
8 taxes, weren't you?
9 MR. HAMMOND: Right.
10 MS. LENKNER: Right. And had a real job in the
11 community. What are some of the things you do right now in
12 community life?
13 MR. HAMMOND: With the hospital.
14 MS. LENKNER: You work at the hospital, you
15 volunteer?
16 MR. HAMMOND: I work with patients there and I
17 help take papers around, newspaper, and help the doctor
18 take the papers around the floor and the nurses, give it to
19 them.
20 MS. LENKNER: And what is the school you went to
21 not very long ago?
22 MR. HAMMOND: Well---
23 MS. LENKNER: Was it clown school you told me?
24 MR. HAMMOND: Yes, we do clown school.
25 MS. LENKNER: So Leroy is a clown. And you 38
1 brought a book with pictures of that, right?
2 MR. HAMMOND: Yes.
3 MS. LENKNER: If anyone would like to see Leroy’s
4 pictures of being a clown, right? And you were there when
5 you tried to go back to visit Polk Center?
6 MR. HAMMOND: Yes.
7 MS. LENKNER: You were with Carl when you guys
8 tried to do that?
9 MR. HAMMOND: Yes.
10 MS. LENKNER: Right. When you go back to visit,
11 how do you feel?
12 MR. HAMMOND: You mean here?
13 MS. LENKNER: When you go back to visit Polk
14 Center, you told me how you felt.
15 MR. HAMMOND: I feel sad.
16 MS. LENKNER: You felt sad. Okay.
17 MR. HAMMOND: I said I feel better where I ’m at
18 now.
19 MS. LENKNER: You feel better now with what you
20 have now.
21 MR. HAMMOND: In my heart.
22 MS. LENKNER: In your heart.
23 MR. HAMMOND: That’s what counts.
24 MS. LENKNER: So you told me you wanted to tell
25 the legislators something and you wanted to ask them a 39
1 question, so what was it you wanted to tell--
2 MR. HAMMOND: Okay. I ’m going to ask you a
3 question.
4 MS. LENKNER: No, you wanted to tell them
5 something first, right?
6 MR. HAMMOND: Yes.
7 MS. LENKNER: What was it you wanted to tell
8 them? Why are you here today?
9 MR. HAMMOND: Would you like to have your son
10 sent down to Polk?
11 MS. LENKNER: Would you like to have your son
12 sent down to Polk?
13 Nobody is--
14 MAJORITY CHAIRMAN DiGIROLAMO: I probably would
15 not, no.
16 MR. HAMMOND: Thank you very much. You make me
17 feel good in my heart.
18 MS. LENKNER: Okay. All right. Anything else
19 you’d like to say?
20 MR. HAMMOND: That’s all I know.
21 MS. LENKNER: That’s all he knows.
22 MR. HAMMOND: Thank you very much.
23 MS. LENKNER: Thank you very much.
24 MS. LOGSDON: Hello. I’m Savannah Logsdon. I’m
25 going to talk a little bit about the Keeping the Promise 40
1 paper. Back in 2009 the Centers for Medicare and Medicaid
2 Services were looking at the home and community supports
3 and the policies around those services, and they decided
4 that they needed a better understanding of what it means to
5 live in the community and what it means to truly live in
6 the community.
7 A couple of self-advocacy groups, National Youth
8 Leadership Network, the Autistic Self-Advocacy Network, and
9 Self-Advocates Becoming Empowered got together to put
10 together this paper. The purpose is of course to provide
11 CMS with a definition of community that captures the
12 essential or vital elements of what that means. We got
13 together and I was on one of the interview teams at the
14 Self-Advocates Becoming Empowered Conference that year, and
15 we interviewed self-advocates that were there for the
16 conference from all over the country who had a wide range
17 of abilities and a wide range of support needs. And we
18 asked three questions:
19 1) What are three things that determine that a
20 place or residential program is not part of the
21 community?
22 2) What are three things that determine that a
23 place or a program where a person gets services
24 really is in the community?
25 3) What do you think community living really 41
1 means?
2
3 From the answers to these questions, we found
4 that people said that community was more than a place,
5 size, or numbers. We got a lot of feedback that we were
6 able to put together and compile that you can read through
7 when there’s more time, but the five broad categories that
8 we classified each of these under was:
9 1) Physical size and structure, programmatic
10 structure
11 2) Rights and self-determination
12 3) Access to real choices and having those choices
13 explained in a way that those individuals
14 actually understood and having the right
15 questions asked
16 4) Qualities and attitudes of providers
17 5) Access to community life, being able to go to
18 church, go vote, participate in things like
19 this or just go to the Y, and the meaning of
20 support and access needs
21
22 There are a lot of issues and I really don’t have
23 time to go in and talk about each individual point, but
24 today w e ’re really talking about the "what" and the "why."
25 But when you move on to talking about the "how," how to do 42
1 this, there’s a lot of policy guidelines that we came up
2 with based on the interviews that we gave to CMS that we
3 would love to have you look at as well. And I’m also happy
4 to come and talk about it at any time if you like.
5 The paper presents indicators of what community
6 is and what it is not. However, people don’t need special
7 skills or education to tell the difference between genuine
8 community and community-like settings or lifestyles.
9 Genuine community means having real choice in
10 assistance, friends, partners, support, and living
11 circumstances. Genuine community happens in inclusive,
12 diverse, and mixed neighborhoods. Living in genuine
13 community means making your own decisions and being an
14 independent and self-sufficient citizen. Living in genuine
15 community is enjoying all the same rights, privileges, and
16 responsibilities of every other citizen. A genuine
17 community people have names not labels, live in
18 neighborhoods not on campuses, make their own choices and
19 enjoy privacy and genuine relationships of quality.
20 To some people, these ideas may seem radical but
21 we disagree. It is only because of the low standards that
22 have controlled the world of disability service provision
23 for too long are these ideas viewed as new or unusual. We
24 believe that we should have the same rights and
25 opportunities as anyone else. People with disabilities 43
1 should be and are by right equal to people without
2 disabilities. This simple but revolutionary idea is what
3 has guided all of the recommendations and discussions that
4 are held within the paper.
5 We refuse to settle for less any longer and we
6 demand for ourselves and for our peers a community that
7 places us in a position of equality to our neighbors. We
8 reject the old models of care and charity for a world that
9 is instead ruled by rights, interdependence, and true
10 community. By these principles we make a common cause and
11 declare to a candid world that a new chapter in the
12 disability rights struggle.
13 Thank you very much.
14 MAJORITY CHAIRMAN DiGIROLAMO: Okay. Thank you
15 all for that terrific testimony, very compelling. Okay.
16 Thank you. That was really good.
17 REPRESENTATIVE O ’NEILL: Mr. Chairman?
18 MAJORITY CHAIRMAN DiGIROLAMO: Yes,
19 Representative O ’Neill.
20 REPRESENTATIVE O ’NEILL: I apologize. I want to
21 thank you for having the hearing and the testifiers. I
22 have to go to another hearing---
23 MAJORITY CHAIRMAN DiGIROLAMO: Okay.
24 REPRESENTATIVE O ’NEILL: ---meeting but I just
25 want to congratulate you on your 70th birthday today and 44
1 wish you a happy birthday.
2 MAJORITY CHAIRMAN DiGIROLAMO: Representative
3 O'Neill, it's actually 64. Thank you.
4 I would like to recognize Representative Mark
5 Painter, who's joined us also, and Representative Brad
6 Roae, also from Crawford County and Mark from Montgomery
7 County.
8 And if I could ask the next set, panel number
9 three, to come up, and that is Sheila McLeod, who is the
10 Manager, Consumer/Family Satisfaction Team; Robert
11 Stauffer, Team Leader, Consumer/Family Satisfaction Team;
12 Sylvia Gillom from Embreeville Class Member; and also
13 Vivian McLeod, who is the Diversity Manager from Vanguard
14 and also a family member.
15 Okay. Everybody's ready. I think, Sheila,
16 you're going to go first?
17 MS. S. MCLEOD: Yes. Yes.
18 MAJORITY CHAIRMAN DiGIROLAMO: Okay. Whenever
19 you're ready.
20 MS. S. MCLEOD: I'd like to say good morning,
21 Chairman and Members of the Committee. I am Sheila McLeod,
22 mom to three daughters, two with intellectual disabilities.
23 I have worked supporting people with disabilities for 29
24 years. I am privileged to bring you a glimpse into the
25 lives of former Embreeville residents. They along with 45
1 their families are extraordinary people.
2 First, let me tell you a little bit about
3 Embreeville State Center. In 1800 it was the Chester
4 County Courthouse. Later, it became what was called an
5 insane asylum, and then finally, an institution for people
6 with intellectual disabilities. By 1900 the conditions had
7 become extremely poor. Over 1,000 people inhabited
8 Embreeville at various points. In 1992, a family group
9 known as PIER, People Interested in Embreeville Residents,
10 filed suit to close the institution. They were joined in
11 the lawsuit by the Justice Department and other advocacy
12 groups. In 1994, a settlement agreement was reached and
13 people had begun to transition into the community.
14 These families were courageous. They had great
15 hope for their loved ones. However, they were afraid,
16 afraid of how their loved one’s well-being would be
17 safeguarded once they left Embreeville State Center. They
18 wanted assurances. These are the same families that were
19 told that Embreeville would be the best place for their
20 sons and daughters because they couldn’t get needed
21 services in their own homes and communities only to realize
22 that their living conditions had become totally
23 unacceptable.
24 Within the settlement agreement, families
25 demanded a conflict-free monitoring system that would 46
1 ensure that their loved ones’ voices would be heard and
2 that the services and supports would be of quality. This
3 would become the Consumer and Family Satisfaction Team. In
4 1996, Vision for Equality through the leadership of Audrey
5 Coccia and Maureen Devaney were awarded the contract to
6 fulfill this provision in the settlement agreement. CFST
7 continues today monitoring the Embreeville class members,
8 advocating and reporting on their satisfaction of services.
9 There was another provision of the settlement
10 agreement which is that every former resident would live
11 out their life in the community and not return to nursing
12 homes, institutions, or large congregate settings. Today,
13 sad to say w e ’re not honoring that agreement. Due to lack
14 of supports in the community, people are not being allowed
15 to age in place. Nursing homes and large facilities have
16 been the option when planning critical supports for people
17 as they begin to age.
18 So for the family members that are no longer here
19 to make this plea, the Consumer and Family Satisfaction
20 Team ask your intervention. Let’s please keep people in
21 their homes, in their communities with their friends and in
22 familiar environments that give them comfort.
23 I ’d like now to share a brief film featuring some
24 of the former Embreeville residents as they transitioned
25 into community from Embreeville State Center. It’s 47
1 entitled "Bridges to the Future.”
2
3 (A video was played.)
4
5 MS. S. MCLEOD: Thank you, Ned.
6 Now, we will hear from Robert Stauffer.
7 MR. STAUFFER: Hi. My name is Robert Stauffer.
8 I ’m a retired school teacher from Philadelphia, but for the
9 last six years I ’ve been working for Vision for Equality as
10 a CFST Team Leader. I have a caseload of 38 consumers,
11 many of them lived at Embreeville State Center. My
12 responsibility is to visit the Embreeville consumers three
13 times a year, and I also go to some of their ISPs. Then I
14 write a narrative snapshot picture of their current lives.
15 I include things in it like their financial situation,
16 community connections, family communications, and I always
17 highlight signs of quality in their lives. I also make
18 recommendations and I do advocacy to improve their lives.
19 Because I serve an aging population with
20 behavioral and medical health issues, a big part of my job
21 is to monitor their current health issues, and I really
22 look at hospitalizations, emergency room visits, and
23 medication changes.
24 I ’d like to tell you about two guys who were
25 Embreeville residents and they have come out into the 48
1 community and live in Philadelphia. First, let’s meet Ed
2 B. Ed is a physically and emotionally healthy 59-year-old
3 man who lives in a quiet middle class northeast
4 Philadelphia neighborhood with his two housemates who were
5 once also at Embreeville. In my opinion, Edward is living
6 a life well lived.
7 Just how different is Ed’s life from his
8 Embreeville days? Well, he lives in a community, he walks
9 in his neighborhood, he says "hi" to his neighbors, he
10 brings in groceries, he puts out the trash, he shovels
11 snow, and he comes and goes from a job he’s had at CVS for
12 13 years. At home he likes to strum his guitar, play
13 cards, and watch some of his favorite shows on TV. In
14 other words, he lives a life similar to what you and I
15 live.
16 Edward has a full life outside of his residence.
17 He keeps in contact with his brother, he takes a yearly
18 vacation, he loves to go down to Phillies spring training,
19 he visits local malls and stores to purchase personal
20 items, he goes bowling, he goes to pro and college sports
21 events, he visits his branch of the library, and he goes to
22 Penn’s Landing, Fairmount Park. So, as you can see, he
23 does things very similar to what you and your family might
24 do. These are all things Edward may never have done if he
25 lived in an institution. 49
1 Now, I ’m going to talk about Arthur J. His
2 situation is a little bit different but no less successful.
3 Arthur lives in a group home in the Germantown section of
4 Philadelphia. He is not ambulatory and needs a wheelchair
5 to get around. Arthur has some serious health issues but
6 is a trooper in his own right.
7 For years after leaving Embreeville, Arthur fed
8 himself finely chopped food and drank regular liquids, but
9 about two years ago he developed aspirational pneumonia and
10 he got some nutritional deficiencies connected with it.
11 Arthur’s doctors and his medical team felt that it would be
12 better for Arthur to be tube-fed for the remainder of his
13 life.
14 At this point, it would have been easier to put
15 Arthur in a nursing home or a large ICF but that was never
16 considered. Arthur’s medical team and everyday staff felt
17 that they had a commitment to him, and they embraced his
18 diagnosis. They received proper training necessary and
19 Arthur lives in the community in the same house today.
20 When you visit Arthur you talk about all sorts of
21 things with him. You talk about sports; he’s a big
22 basketball fan. He loves LeBron James. You talk about
23 current events. You talk about TV shows. He loves the
24 Price is Right and Family Feud and any games shows on TV.
25 He loves cars. His favorite car is a VW Beetle. We talk 50
1 about our families; we talk about our friends. In other
2 words, chatting with Arthur is very similar to what you
3 guys probably do around the water cooler in the morning
4 here in the Capitol.
5 I ’m here to tell you that the people I serve are
6 better off living in the community rather than
7 institutions. Why? Because they have everyday lives.
8 I have sitting next to me a very remarkable
9 person. You saw her on the film. Her name is Sylvia
10 Gillom. Sylvia is very special to me. I visit her often
11 in her house out in northeast Philadelphia. I ’m an
12 advocate for Sylvia. I ’ve been an advocate for her for
13 about six years. I ’m going to ask her a series of
14 questions and she’s going to answer for herself. And if
15 there’s some things that she might have forgotten, I ’ll
16 remind you of them, okay?
17 All right. So this is Sylvia Gillom.
18 So, Sylvia, how long did you live at Embreeville
19 State Institution?
20 MS. GILLOM: I was in Embreeville for two years
21 and they were very mean to me. And they put me in the
22 wheelchair, but I ’m out now.
23 MR. STAUFFER: Well, you told me that they tied
24 you to a wheelchair?
25 MS. GILLOM: Yes, they tied me to the wheelchair, 51
1 too.
2 MR. STAUFFER: Right. Right. So can you tell us
3 some more things about your life there?
4 MS. GILLOM: It was terrible. They were mean to
5 me. But I'm out now. I hope I never go back.
6 MR. STAUFFER: I hope you never have to go back,
7 too. And when you were there, you never were able to go
8 outside, were you?
9 MS. GILLOM: Oh, yes, I did go outside but very
10 seldom. I never go out to places.
11 MR. STAUFFER: Okay. So you never went out into
12 the community around Embreeville?
13 MS. GILLOM: No.
14 MR. STAUFFER: Okay. How did you feel about
15 leaving Embreeville?
16 MS. GILLOM: Oh, I was very happy. I had prayed
17 about it and the Lord answered my prayers.
18 MR. STAUFFER: You prayed to get out? Okay. And
19 you're happy to have your freedom now?
20 MS. GILLOM: Yes, I'm very happy.
21 MR. STAUFFER: Okay. What are the differences
22 like in living in an institution and living in a community?
23 MS. GILLOM: Living in a community you have more
24 freedom. You can visit your family and go to different
25 places like movies or out to dinner with your family and 52
1 friends.
2 MR. STAUFFER: Okay. And you also told me that
3 you have a more peaceful life?
4 MS. GILLOM: Yes, I have more peaceful life.
5 Now, I do.
6 MR. STAUFFER: Okay. Why is it more peaceful?
7 MS. GILLOM: It’s peaceful because I was in a lot
8 of pressure when I was in Embreeville but now it’s peaceful
9 and I want to keep it that way.
10 MR. STAUFFER: Okay. How did you feel about
11 moving into the community and having your own space?
12 MS. GILLOM: I love to be in the community
13 because I enjoy meeting a lot of people and I just love it
14 because it was peaceful and I enjoyed being with my family
15 and friends.
16 MR. STAUFFER: What are some of the things that
17 you do in the community today, now?
18 MS. GILLOM: Well, my staff takes me out. I go
19 shopping. I go to the movies. I go to dance and I ’m going
20 away this summer to different places.
21 MR. STAUFFER: You’re going to take a vacation
22 this summer?
23 MS. GILLOM: Yes, I ’m going to take a vacation.
24 MR. STAUFFER: Good. Would you ever want to live
25 in an institution again? 53
1 MS. GILLOM: Never. I hope not, no.
2 MR. STAUFFER: Why not?
3 MS. GILLOM: Because I don’t want institutions.
4 They treat you bad, very bad. I hope and pray I never go
5 there.
6 MR. STAUFFER: Thanks, Sylvia.
7 MS. S. MCLEOD: Thank you so much.
8 MR. STAUFFER: Thank you.
9 MS. GILLOM: Thank you.
10 MS. S. MCLEOD: And now we will have family
11 member Vivian McLeod will give testimony on behalf of her
12 sister Brandee McLeod.
13 MS. V. MCLEOD: Good afternoon. I ’m Vivian
14 McLeod, here today to testify on behalf of Brandee McLeod.
15 Brandee is a 35-year-old young lady who is very
16 medically fragile with intellectual disabilities. I
17 welcome you to take a look at pictures of Brandee in the
18 community as I read through my testimony.
19 Growing up, Brandee has been the central focus of
20 our family, mostly due to the ability to have her live at
21 home with us. She lived at home through the age of eight
22 with natural supports only. And it truly was a privilege
23 to have her share in all family activities, holidays, and
24 special occasions with her loved ones. However, at the age
25 of eight she had to be placed in an institution because of 54
1 her increased healthcare needs and the fact that there were
2 no community supports provided to aide in her 24-hour care.
3 While this was a tremendously difficult decision for our
4 family, it seemed to be the only viable choice in an
5 attempt to sustain her level of care.
6 Brandee lived in an institutional setting for
7 five years, from the age of 8 to 13. During this time, we
8 experienced a number of challenges with Brandee’s care,
9 including frequent hospitalizations. Also, as much as we
10 visited and brought her home on occasions, Brandee was not
11 thriving. We felt her sense of isolation and need for
12 family interaction on a continual basis.
13 As her care declined in the facility, it became
14 increasing clear that institutional living did not promote
15 her health, safety, or well being. Also, she was very
16 unhappy there. With that realization and concern for her
17 long-term quality of life, Brandee returned home absent of
18 needed supports. As a family, we worked feverishly to
19 advocate and put supports in place for Brandee within the
20 home and community.
21 Brandee has now been back home with her family
22 for 22 years. During the years, we have been able to
23 obtain critical supports for her that have allowed her to
24 flourish medically, connect with her family, and both
25 support and be involved in the community. Brandee has 55
1 friends, she volunteers, she is often found out and about
2 in her community, she votes, and completely enjoys her time
3 with her family and friends. Yes, Brandee has friends and
4 relationships that are valuable to her in her community.
5 Parallel to the people that once lived in
6 Embreeville, Brandee’s life in the community is threatened
7 as well. Current polices around healthcare limit the scope
8 and availability of services needed to sustain her life.
9 With proposed limits on essentials such as medications,
10 durable medical equipment, doctors’ visits and in-home
11 supports, the threat of Brandee returning to an institution
12 is looming near. Brandee, her family, her support network
13 and the "system" have invested far too much in attaining a
14 meaningful life for it all to be lost.
15 The inequality of the proposed cuts in healthcare
16 will not affect those living in institutions, only those in
17 community. People in institutions will not be subject to
18 reductions or limits on items such as medications,
19 wheelchairs, or other needed supplies. How ironic that a
20 young lady that could proudly leave out of the front door
21 of an institution and live a successful life at home with
22 her family only to have to reenter the institution through
23 the back door because limits have been imposed on people
24 that resided in the community that cannot have their care
25 needs met. 56
1 Brandee is not alone in these threats. There are
2 many individuals that will be affected by these pending
3 cuts of service. Please, we need to fix this for Brandee
4 and many others just like her.
5 I thank you for allowing me to tell Brandee’s
6 story. I am proud of her strong will and tenacity and I
7 ask that you remember Brandee’s story of promise and
8 triumph as you consider the necessary interventions that
9 will allow for her continued success. Thank you.
10 MS. S. MCLEOD: We thank you.
11 MAJORITY CHAIRMAN DiGIROLAMO: Great job, all of
12 you. Terrific.
13 It’s really good for the Committee to hear this
14 testimony and hear these stories. I really appreciate you
15 coming with us and sharing your stories. Thank you.
16 Okay. We have our last panel for today, Audrey,
17 Lisa, and Nancy, all familiar faces to the Committee. We
18 appreciate you being here, and I think, Audrey, you’re
19 going to start first?
20 MS. COCCIA: I am.
21 MAJORITY CHAIRMAN DiGIROLAMO: Yes.
22 MS. COCCIA: I want to thank you, Chairman and
23 the Members of the Committee, for allowing me to have the
24 opportunity to testify before you today.
25 My name is Audrey Coccia, and I am the Co-Founder 57
1 and Co-Executive Director of Vision for Equality, a
2 statewide advocacy organization that provides advocacy,
3 monitoring, training, and outreach to thousands of people
4 with intellectual disability and autism and their families
5 across the State of Pennsylvania.
6 So far this morning we've heard about the
7 Olmstead Decision, its, intent and about the Olmstead State
8 Plans that have been successful around the country. We
9 have heard life stories from individuals who have left
10 State Centers and are glad they did, and about a previous
11 closing of a Pennsylvania state center, Embreeville, where
12 the people who lived there and their families played a
13 pivotal role in their return to community and where, when
14 given the proper supports, people who left Embreeville have
15 lived good lives.
16 I have several questions I'd like to ask today:
17 Do we want to continue the vital work we have achieved in
18 community for people with disabilities? Or do we want
19 people to live behind the door in segregated settings or
20 beyond the door in community?
21 I've been involved in the disability system for
22 the better part of the last 40 years. I can say
23 unequivocally that during that time our State, for the most
24 part, has stood in the forefront of change in upholding the
25 rights of people with disabilities and providing 58
1 opportunity for people to live and flourish in their
2 communities.
3 We were one of the first States to bring the
4 "Right to Education” to every child with intellectual
5 disabilities, leaving no child behind. We have been
6 instrumental in closing and downsizing of large facilities
7 where thousands of people were kept often far from home,
8 bringing many people back to their families and
9 communities. With the help of providers, we have built a
10 strong community of services and we have, through waivers,
11 supported people remaining at home with their families
12 creating opportunities for people and support for their
13 families.
14 We have seen the results of our hard work in the
15 faces and the lives of the many that have benefited from
16 Pennsylvania’s strong commitment to community.
17 Pennsylvania had been a leader, proudly on the cutting edge
18 of change for those with intellectual disabilities. Yet
19 now, in spite of all the benchmarks we have achieved in the
20 past, our system in the last decade seems to have taken a
21 downward turn.
22 Sadly, as to those in State Centers in the last
23 few years it has taken on a glacial pace with only small
24 numbers getting a chance to come back to community. Fiscal
25 constraints and limited funding imposed by the State has 59
1 begun eroding our community building possibilities. It has
2 obliged agencies to go out of business or stop any efforts
3 of expansion or willingness to take on new challenges due
4 to the cumbersome and complex processes now obliged by the
5 Office of Developmental Programs. Some providers have
6 closed workshops and have laid off much-needed staff
7 decreasing oversight and support to the people they serve.
8 We have seen the State change the service
9 definitions so providers now will consider eight people
10 living in a group home where in the past they would have
11 had three. We have seen counties forced into using their
12 decreased base funds that in the past helped sustain people
13 with no services living with their families to now using
14 these scarce dollars instead to place people in costly
15 segregated settings because no provider will take them.
16 We are seeing cuts to services for people living
17 at home whose families rely heavily on these supports to
18 keep their loved ones with them. We are seeing families
19 losing respite and people losing transportation and being
20 denied specialized services that in the past they would
21 have received.
22 The community system is imploding because the
23 State, intentionally or not, is failing in its
24 responsibility to support those who live in our
25 communities. We are watching our community system shrink 60
1 to such a point there remains less than a handful of
2 community placements left when emergencies occur and
3 providers are no longer willing to consider opening new
4 homes because of the way the payment system has now been
5 devised. They wait as long as six months, if they are
6 lucky, before they receive a dime. They have to go on good
7 faith the State will provide. Yes, we know the State will
8 provide.
9 The exception process to get approval for
10 additional funding to support a person who needs it can
11 take months with no guarantees you will be reimbursed for
12 what you put out to serve the person in the interim. No
13 one can maintain a business, especially not a nonprofit,
14 this way. Providers are closing their doors to those with
15 exceptional need and more and more people are going to more
16 expensive State Centers, private licensed care facilities,
17 and private licensed facilities due to lack of adequate
18 community funding for those with increased behavioral
19 needs. And more and more people are going into nursing
20 homes that do not need to be there because agencies are
21 turning away medically fragile, high cost individuals
22 because there is no longer adequate funding to support
23 them. We are forcing, by lack of our commitment, all of
24 these people into more costly settings. Again I ask do we
25 want people to live in segregation or do we want people to 61
1 live in community?
2 Instead of keeping our commitment to community,
3 as we have in the past, we are witnessing the converse. We
4 are sliding down a dangerous, slippery slope, one that is
5 not cost-effective or in people’s best interest, nor that
6 protects people’s civil rights. Numbers don’t lie. This
7 year alone in Pennsylvania over 236 people with
8 intellectual disabilities were banished to nursing homes,
9 which is a 26 percent increase.
10 In the last six or seven years after 40 years of
11 moving people out of centers, we have seen 24 new people
12 admitted who could have been served in community with
13 proper funds. This last year in one county alone over 75
14 people have been placed into private intermediate care
15 facilities and private licensed facilities not because they
16 needed to but because provider rates are too low to sustain
17 the person at the level of support they need.
18 In addition, the State has approved the building
19 of a 32-bed intermediate care facility in Delaware County,
20 and in another county, a 65-bed facility for the medically
21 fragile, yet they will scarcely put up funds to open new
22 homes in community. Why? We have over 1,200 children in
23 segregated settings instead of having them supported in
24 their own homes with family.
25 More and more people each day are being driven 62
1 from family, home, and community. Community living
2 arrangements are refusing to serve individuals who need
3 one-to-one support because providers’ rates are too low to
4 sustain the level of care the person needs, and workshops
5 are discharging people who need one-to-one because the
6 State will no longer pay for their support.
7 It just doesn’t make any sense why the department
8 is throwing away 40 years of community building. Why is
9 ODP willing to spend money for segregated care but
10 unwilling to provide what people need in community? Why
11 have they not developed a comprehensive strategic plan that
12 insures adequate funding to meet people’s needs in the
13 community and includes the spirit of Olmstead?
14 Unfortunately, the actions of the Department of Welfare and
15 the Office of Developmental Programs suggest a strong
16 institutional bias that has left a string of broken
17 promises to the 56,000 who want to live in community and
18 the 25,000 with intellectual disabilities and autism who
19 wait with nothing.
20 Continuing to underfund the community system that
21 supports people with intellectual disabilities and autism
22 and layering on policies and procedures that tie the system
23 in knots is seriously weakening what once was strong. With
24 all due respect, the Department of Welfare and the Office
25 of Developmental Programs has created policies and rates 63
1 that are strangling the community providers, and by so
2 doing, placing those with intellectual disabilities living
3 in community at risk. I ask again, do we want people to
4 live in segregated settings or do we want them to live in
5 community?
6 This year’s proposed State budget provides a
7 combined 11.1 percent increase to segregated State Centers
8 where there are barely 1,000 people left and to
9 intermediate care facilities where 3,000 reside while only
10 proposing a 5.8 percent increase for 56,000 who live in
11 community. Somehow that just doesn’t equate. Yes, there
12 is a proposed increase of 1,100 people off the waiting
13 list, and we are thankful for that, but this we fear will
14 be those at the expense in community. We are afraid we are
15 robbing Peter to pay Paul.
16 For those in community with autism, the budget
17 projects serving only 100 more while possibly as many as
18 10.000 wait. The budget also proposes decreasing base
19 funding once again this year, which is the lifeline for
20 community families who wait with little on no service. We
21 are spending 24 percent of our ODP funding for a little
22 over 4,000 people in segregated settings while many of the
23 56.000 in community, including the 4,070 living with
24 families who are in emergency situations and the 10,000
25 with autism remain unserved or underserved. Something is 64
1 wrong with this picture. I ask again do we want people to
2 live in segregated settings or in community?
3 On top of this we have a Governor’s proposal to
4 CMS, the Healthy Pennsylvania Plan, that will administer
5 Medicaid insurance for people with disabilities that will,
6 if approved, deprive people with disabilities in community
7 who rely on this help for necessary medical care and
8 services, medications, and medical equipment that they
9 desperately need to live and survive. If they need this
10 medical assistance, they and their doctors will now have to
11 endure mountains of red tape to get an exception if they
12 can get one at all. Oh, but there are winners. They are
13 exempted. You guessed it. It’s those who live in State
14 Centers and intermediate care facilities. They don’t have
15 to apply.
16 So what it looks like is happening is if you live
17 in a State Center or an intermediate care facility, you can
18 get what you need, but if you live with a community
19 provider or with your family, you can kiss your services,
20 health and safety -- oh, and if you have medical or
21 behavioral challenges, the chance to live in community -
22 good bye. I ask again do we want people to live in
23 segregated settings or do we want them to live in
24 community?
25 Our concerns are urgent. We are sounding the 65
1 alarm. In spite of Pennsylvania's impressive
2 accomplishments during our "golden years,” our relaxed
3 vigilance is now jeopardizing our loved ones who are living
4 in community. We are witnessing the dismantling of our
5 robust community system. We are encountering a whole
6 caravan of complications that is seriously impacting our
7 ability to serve people well. You cannot sufficiently run
8 a dual system where 4,000 are privileged and the rest are
9 not.
10 Our Governor and the State Legislators must play
11 a pivotal role in deciding where Pennsylvania wants to go
12 from here in terms of their commitment to all people with
13 intellectual disabilities. An Olmstead Plan and a robust
14 community service system are imperatives. It is time
15 Pennsylvania rethinks how it serves and supports its
16 citizens with intellectual disability and autism. Do we
17 want a segregated setting for people or do we want them to
18 live in community?
19 Let's remember that living in community is a
20 civil right for all of us. The individual with a
21 disability and his or her right to the independent life
22 outside the institution or segregated setting should be
23 respected, and for the 70,000 already in community, it
24 means our leaders recommitting to them their right to
25 remain and be properly supported where they want to be and 66
1 belong, in community.
2 Again, I thank you for again your unprecedented
3 willingness to listen to advocates and families tell their
4 stories.
5 I do just want to say one other thing. I am a
6 parent. When I got up this morning, I got up at 5:00 to
7 bathe and dress and prepare my daughter’s meals and give
8 her her insulin before I drove two hours here. And I know
9 how much community means for me for her while I ’m here and
10 when I ’m gone. But I do understand the parents who worry,
11 who have their family members in State Centers. And what
12 we need to do is to make sure that all people get the
13 services they need, and that if possible, as many people
14 who choose and want to live in community get the
15 opportunity to do so.
16 Thank you.
17 MS. TESLER: Good morning. My name is Lisa
18 Tesler. I’m the Policy Coordinator for the Pennsylvania
19 Waiting List Campaign. I ’m also a parent of an 18-year-old
20 with autism, which is what brings me to this work.
21 I want to thank you for the opportunity to
22 provide testimony today. Thank you, Chairman DiGirolamo
23 and Members of the Committee, for listening to us today.
24 Deinstitutionalization is possible. There are
25 myths, assumptions, and misconceptions about 67
1 deinstitutionalization. As a community, we need an open
2 discussion of how to plan for the future. People with
3 disabilities and their families want to live, work, and
4 play in their community like everyone else. Individuals
5 should never have to give up their civil rights in exchange
6 for services. We need to discuss how we can move forward
7 and begin a coordinated effort to close all large
8 congregate segregated facilities. It is the right thing to
9 do.
10 The National Council on Disability published a
11 report in 2012 titled "Deinstitutionalization: Unfinished
12 Business.” We have provided the Committee with part of
13 that report for you to read and understand the research and
14 literature behind deinstitutionalization. We believe that
15 this report is a good starting point to begin a discussion
16 about how best to move forward. We need to dispel some of
17 the myths around this issue.
18 Myth: Pennsylvania needs institutions to serve
19 the "most difficult to serve" individuals, those who are
20 medically fragile, have dual diagnoses, and those involved
21 in the criminal justice system.
22 Reality: Eleven other States have closed all
23 public institutions and they have developed the capacity to
24 serve every single person in that community. They have
25 used approaches such as person-centered planning, 68
1 integrated long-term supports with medical and psychiatric
2 care. They have developed crisis teams, stabilization
3 services, and specialized housing. It can be done.
4 Myth: People in institutions are more severely
5 disabled than those who live in community, and no evidence
6 shows that they can be served effectively in the community.
7 Reality: There are more people in the community
8 who have extensive support needs than those in
9 institutions. Many people in institutional settings do
10 require a high level of services, but there are many people
11 just like them that are already living in the community and
12 being supported, often with their families. You’ve heard
13 Brandee’s story.
14 To illustrate this, data from California show
15 that 18 percent of the people living in institutions and 5
16 percent of the people in the community are dependent on
17 medical technology. But when you look at the total
18 numbers, there are 80,000 people in the community compared
19 to just over 2,000 in their State Centers. So that means
20 that more than 4,000 people who are technology-dependent
21 live in that community while only 405 are in their State
22 institutions. It can be done.
23 Myth: Closing the State Centers will not save
24 money.
25 Reality: The average cost of serving people in 69
1 the community shows us that it is cost-effective. While
2 some people leaving State Centers will cost more than the
3 average, closing an institution over time will result in
4 overall savings to the system. In your report we copied
5 you, there are three or four pages of how savings were
6 realized in different States, and the amount of saving will
7 be dependent upon the community system and how it’s
8 developed. So I encourage you to take a look at how the
9 savings have come to light in other States that have closed
10 their centers.
11 I have also enclosed as part of my testimony a
12 bar graph, very simple, $298,000 per person per year to
13 serve someone in a State Center. The average cost of
14 people living at home with their family, $18,000; group
15 home, a little over $100,000. It is cost-effective to
16 serve people in their community.
17 Also, I looked back at our State budget. You
18 will see that the cost to maintain our State Centers
19 increases every year, even as the population decreases. In
20 2012/2013, the State Center budget went up by 4 percent,
21 served 1,112 people. 2013/14, increase of 12 percent,
22 population went down, 1,060. In 14/15, there was a 9
23 percent increase proposed and yet they’re saying they will
24 only serve 970 people. Costs are going up, population is
25 going down. 70
1 There are discussions in the Office of
2 Developmental Programs about how our community system needs
3 to be reformed in order to make it sustainable over time,
4 and the ODP Futures Plan is intended to address some of
5 those needed changes. However, the State Center system was
6 not part of the ODP Futures Plan. Clearly, the State
7 Center system is not sustainable over time, but the Office
8 of Developmental Programs chose not to include that in
9 their future planning process.
10 But I digress. This is really not about money.
11 This is about civil rights and quality of life.
12 Myth: Lives of people with intellectual
13 disability don’t change significantly when they leave an
14 institution.
15 Reality: Well, you have heard real life stories
16 here today. But I will tell you that life in the community
17 provides for freedom, dignity, and a sense of belonging
18 that is not possible in an institution. There have been a
19 number of studies that show quality of life improves when
20 people leave their institutional settings and they have
21 more positive outcomes as far as health, competence in
22 daily living skills, and they have much more opportunity to
23 acquire new skills in the community.
24 People report having more relationships and
25 friendships and also more likely to like where they live at 71
1 a much higher rate when they're in the community. There is
2 a comparison chart of the quality of life indicators from
3 the National Core Indicators Project in your report.
4 So I have highlighted some of the research and
5 data that supports deinstitutionalization. You can read
6 the entire report. You can question us. We can provide
7 any additional information you need. We do have some
8 recommendations to the Department of Public Welfare as to
9 how we can move forward. We can learn from the 11 other
10 States that have closed their State institutions.
11 1) Develop a plan to close the State Centers and
12 commit to fully funding a robust and responsive
13 community system capable of supporting all
14 people with intellectual disabilities and
15 autism. Each person in the community must be
16 fully and appropriately served.
17 • You must improve and enhance the current
18 service definitions to allow for real
19 person-centered supports based on assessed
20 needs. You need to roll back and remove
21 some of the restrictive regulatory
22 language and now allow providers and their
23 families to design flexibility systems of
24 support and organize the services to best
25 meet their needs. 72
1 • You need to adequately fund those enhanced
2 community-based services to make sure you
3 are meeting the needs of all individuals
4 even when they have complex situations.
5 We need to support providers to meet all
6 assessed needs, especially when the
7 individuals have medical and behavioral
8 challenges.
9 2) We would like to see the Department of Public
10 Welfare create Mobile Crisis Teams and short
11 term stabilization services. Individuals who
12 are medically fragile and those with dual
13 diagnoses are more likely to experience a
14 crisis that threatens their ability to
15 successfully live in the community. Georgia
16 established mobile crisis units that could
17 respond quickly anytime of the day or night.
18 They have been highly effective in providing
19 immediate and short-term services to avoid
20 institutional placements.
21 3) We would like you to convene a review panel
22 comprised of experts from the Department of
23 Public Welfare, the Office of Developmental
24 Programs, the Governor’s office, and the
25 legislative branch to provide oversight 73
1 regarding each and every admission to private
2 licensed facilities, intermediate care
3 facilities, State Centers and nursing homes.
4 Each branch of government has a responsibility
5 to the people of this State to assure civil
6 rights are being honored and that all people
7 receive the highest quality care in their
8 community.
9 4) We would like to see some accountability and
10 transparency as to what is happening in the
11 community system. We would like regular
12 reports from the Department of Public Welfare
13 describing what is happening that is causing
14 individuals to get placed into institutional
15 settings. We want a quarterly report that
16 shows who is going into State Centers, nursing
17 homes, ICFs, and PLFs. Only when there is a
18 real understanding of where the community
19 system is failing can we as stakeholders make
20 changes and recommendations to improve the
21 system.
22
23 Pennsylvania ranks ninth highest in the nation in
24 State Center population. We can do better. While we have
25 moved from housing about 10,000 people in 1977 to just 74
1 around 1,000 people now, it is time to take the next bold
2 step and close all remaining State Centers.
3 Deinstitutionalization is a human and civil
4 rights issue. People should not be required to give up
5 their rights to receive the services they need.
6 Thank you for your time.
7 MAJORITY CHAIRMAN DiGIROLAMO: Thank you, Lisa.
8 Nancy, whenever you’re ready.
9 MS. MURRAY: Good afternoon. My name is Nancy
10 Murray and I am the President of the Arc of Greater
11 Pittsburgh. More importantly, I ’m the parent of two adult
12 children who happen to have intellectual disabilities.
13 The Arc of Greater Pittsburgh is a member of
14 ACHIEVA. We support more than 14,500 children and adults
15 with disabilities and their families throughout western
16 Pennsylvania. We provide a full range of supports from
17 early intervention, advocacy, family support, residential
18 and vocational services, recreational opportunities, in
19 home care, and special needs trusts and long-term planning.
20 This morning, you have heard some powerful
21 personal stories. Other presenters have shared with you
22 the most current information about national trends and best
23 practices in providing community supports for people with
24 disabilities. Our focus has been on community supports
25 because no one wants to live in a facility. 75
1 Just ask yourself for one moment, would you want
2 to live in a nursing home, an intermediate care facility,
3 or a private licensed facility? Or would you want to live
4 at home with support services? Would you want to have to
5 place a loved one in a facility or have them live at home
6 with you with assistance? Do you want children to have to
7 live in segregated congregate care facilities or in homes
8 where they can go to school and enjoy community activities
9 with children who do not have disabilities? Children
10 especially deserve to live with families.
11 Although, as you’ve heard, Pennsylvania is
12 lagging behind in many respects, it is our firm belief that
13 Pennsylvanians across the Commonwealth have the necessary
14 talent, creativity, and passion to make our State a leader
15 in innovative, cost-effective community supports for
16 children and adults with disabilities. However, we need
17 you and all Members of the Pennsylvania Legislature to make
18 the commitment to ensure that people in need of services
19 receive them in their homes and communities and not in
20 segregated facilities. A facility is not a home.
21 Therefore, we respectfully ask you and other
22 Members of the Pennsylvania Legislature to do two things:
23 1) Urge the Secretary of the Department of Public
24 Welfare and the Governor’s office to institute
25 an immediate moratorium on all admissions to 76
1 all State Centers.
2 2) Pass a resolution to direct the Legislative
3 Budget and Finance Committee to study and issue
4 a report on the closure of the five remaining
5 State Centers, including economic impact,
6 potential for economic development of the five
7 properties, opportunities for State workers in
8 the post-closure environment and the potential
9 to reinvest post-closure financial savings in
10 community-based supports for people on the
11 waiting list for services.
12
13 Thank you.
14 MAJORITY CHAIRMAN DiGIROLAMO: Okay. I thank all
15 three of you.
16 And, Nancy, I think the answer to your question
17 for me anyway I ’d rather be home and I think everybody
18 would say the same thing of all the Members on the
19 Committee.
20 And as far as your question on the resolution for
21 Legislative Budget and Finance, I believe Representative
22 Murt is working on that to get a resolution passed and do
23 that study. So I think that’s one of the things that is in
24 progress.
25 MS. MURRAY: And, Representative Murt and to all 77
1 of you, we stand ready to assist you in any way that we
2 possibly can.
3 MAJORITY CHAIRMAN DiGIROLAMO: Terrific.
4 We have to be done by one o ’clock because the
5 House is in session. I know I ’ve got 100 questions and I ’m
6 sure the other Members do also. W e ’ve got a couple of
7 minutes. I know Representative Pashinski had asked for a
8 question. Do you have a question? And then w e ’ll go to
9 Representative Murt and then Representative DeLissio. I ’d
10 ask you to go as fast as you can, as quickly as possible.
11 REPRESENTATIVE PASHINSKI: Thank you,
12 Mr. Chairman.
13 Thank you to all of you who came here today and
14 testified, to Leroy and to Carl and Sylvia, you did a great
15 job. And to all of you that take care of these wonderful
16 folks, thank you so very much for doing this.
17 To Mr. Kashatus, who I believe is an advocate of
18 the facilities through your experience, to all of you, I ’m
19 having difficulty understanding if the large care facility,
20 whatever we want to call it, the institution, if it was
21 managed appropriately, I find it offensive that these folks
22 here have had negative experiences at Polk and Embreeville
23 and so on. Shame on the oversight and lack thereof. And
24 to your testimony, we need that oversight.
25 But is there never a time when an individual 78
1 would be best taken care of in an institution? And
2 wouldn’t it be appropriate, as you suggested for choice,
3 where a family feels as though their loved one is being
4 cared for most appropriately in a qualified healthcare
5 campus rather than using the word institution?
6 MS. MURRAY: Currently, there is no one living in
7 one of our State Centers who cannot be provided quality
8 supports in the community, and it is our firm belief that
9 if the person with the disability were asked, not through
10 their family member but if the person was asked, they would
11 choose to live in a home in a community just like we do and
12 the choice that we most likely would make for our family
13 members where they could enjoy living in a home with other
14 people, going out to community events, preparing their
15 meals, doing things that we often take for granted, the
16 opportunity to wake up in the morning when we wish, the
17 opportunity to eat for breakfast, lunch, or dinner what we
18 wish and not what is just served in the cafeteria, the
19 opportunity to go outside and sit on a porch on a bright,
20 sunny day instead of, as we heard, not being able to go
21 outside, the opportunity to just go in the community, go to
22 a parade or shopping mall, go out for dinner.
23 REPRESENTATIVE PASHINSKI: But does every family
24 have the family structure strong enough and able enough to
25 be able to do that? I think all of us that have taken care 79
1 of our loved ones at home know the kind of sacrifice and
2 the physical and mental strain upon the family in order to
3 do that. And I'm just wondering. There comes a time when
4 that family itself doesn't have the strength. They still
5 have the will but they may not have the physical strength
6 and ability to do that. I'm just looking for that choice
7 for these folks because I think if the center is being
8 operated appropriately, then I believe that person would be
9 loved and taken care of as well in that setting, too.
10 Maybe Mr. Kashatus might have a--
11 MR. KASHATUS: I do have a comment on that,
12 Representative.
13 I attend ISPs of the individuals who I am a
14 guardian for. Of course, I also get permission from other
15 family members to ISPs. And when the question comes up and
16 the county caseworker is there on many of these occasions
17 if not all of them, when the question is asked can this
18 person be served in the community at this time, the answer
19 is no. So I have to disagree with what you say. Maybe
20 eventually at some time in the future that might take
21 place, but at the present time, the ones that I am involved
22 with, the answer is no.
23 MS. COCCIA: I have worked with people who have
24 been in the second expansion into community for Pennhurst
25 who were still living in facilities long after Pennhurst 80
1 was closed. I did it through a Federal court order for the
2 City of Philadelphia. I have worked with hundreds of
3 families and I do understand their fears and anxieties. I
4 do. When you think that you’ve put everything away and
5 that it’s folded all up and now you can rest and feel
6 assured that the person will be okay, and then someone says
7 again now you have to consider moving them back to
8 community or into community. Look, the system is not
9 perfect, but as many families as I ’ve worked with and
10 sometimes things have not all gone well, when I have gone
11 back to them and said would you want to go back? Would you
12 want your son or daughter to go back, they have every
13 single time said to me no.
14 We do need to do something. We don’t have the
15 luxury as a State anymore to keep facilities open that are
16 costing $257,000 while so many people wait, but I do know
17 whoever you are and wherever you are, you have the right to
18 be served well.
19 My daughter lived through Pennhurst. She didn’t
20 go to Pennhurst; she lived at home. She didn’t walk until
21 she was five. She didn’t chew or eat until she was 11.
22 She was very significantly disabled and still remains so,
23 but she’s had a great life in community. She has had a
24 supportive family and we have many families, believe it or
25 not, who are single parents who every day take care of 81
1 their son and daughter and do it very well. But all of
2 them need support and we have to offer that support. But I
3 think as some juncture w e ’re going to have to decide where
4 w e ’re spending our money and how we can spend it the best
5 way.
6 REPRESENTATIVE PASHINSKI: I appreciate it. And
7 I thank you all because I know we are running out of time.
8 MAJORITY CHAIRMAN DiGIROLAMO: Thank you. We
9 have some of the other Members who have questions. W e ’ve
10 only got another three minutes, and I would ask the Members
11 if you have any questions that you want answered that w e ’re
12 not able to, to submit the questions in writing to either
13 Ashley or Liz and we will get answers to them.
14 Representative Murt.
15 REPRESENTATIVE MURT: Not a question but a
16 statement. When Carl and Leroy were testifying, I am
17 shocked that in our lifetime a friend of ours, they took
18 out all his teeth without anything for pain. We got paid,
19 but the staff would take the money. The punishment was you
20 had to walk on a rubber floor and carry a bucket of bricks.
21 They picked up a floor brush and threw it at you. Sylvia
22 said that she was tied to a wheelchair. I am in shock
23 about this and I ’m going to be contacting Fred Lokuta today
24 to find out if these are the practices in the State
25 Centers, as on elected official, I ’m just not going to 82
1 tolerate it.
2 I know that that’s in the past and I know w e ’ve
3 moved on since the days of Pennhurst, but this really makes
4 me angry. And w e ’re going to follow up on this to find
5 out.
6 Tom, I know that you have a family member at
7 White Haven and I would ask you to take me to White Haven.
8 I would like to visit White Haven.
9 MR. KASHATUS: Thank you.
10 REPRESENTATIVE MURT: And I would ask for you to
11 meet me there and show me around.
12 MR. KASHATUS: We can do that.
13 REPRESENTATIVE MURT: But I ’m going to be
14 contacting Fred Lokuta today about some of this testimony.
15 MR. KASHATUS: The most important statements I
16 had in my testimony here will help answer that.
17 Eventually, the ODP initiated many programs over the years,
18 especially since the five-year plan and all, back in the
19 1990s which increased the quality of life in their ICFs and
20 in the community. So quality of life has been improved no
21 matter where you go and I have to disagree. What was being
22 talked about in the past I can honestly believe it’s not
23 taking place today in segregated settings as far as the
24 State Centers. I know that. I ’m on the Board of Trustees
25 at White Haven Center, and if I see something like that and 83
1 I go there quite often, we visit every week, maybe
2 sometimes even more than that, and I don’t see any.
3 MAJORITY CHAIRMAN DiGIROLAMO: Okay.
4 Representative DeLissio.
5 REPRESENTATIVE DeLISSIO: Mr. Chairman, I ’d love
6 to hear a part two, the Department of Public Welfare. I ’m
7 hoping you’re maybe planning a sequel to this, a part two,
8 to hear from the Department.
9 MAJORITY CHAIRMAN DiGIROLAMO: Okay. I believe,
10 Liz, am I correct, they were invited to come today to the
11 testimony and declined to come. So we will take that--
12 REPRESENTATIVE DeLISSIO: I ’m sorry, they
13 declined to come?
14 MAJORITY CHAIRMAN DiGIROLAMO: Yes.
15 REPRESENTATIVE DeLISSIO: Well, maybe that
16 answers my question.
17 MAJORITY CHAIRMAN DiGIROLAMO: We will take that
18 under consideration.
19 So again, we do have to finish. Representative
20 Painter, real quick. W e ’ve got about a minute left.
21 REPRESENTATIVE PAINTER: I ’m sorry. I have a lot
22 I would like to say but I know w e ’re short on time. But I
23 just want to address the question that one of the
24 testifiers asked: Would you want your son at Polk? It’s
25 not a theoretical question for me. I have two adult sons 84
1 with intellectual disabilities and the answer is no,
2 absolutely not, not today, not ever.
3 Thank you, Mr. Chairman.
4 MAJORITY CHAIRMAN DiGIROLAMO: Okay. Again,
5 thank you all for the very, very compelling testimony. We
6 really appreciate you taking the time to be here. Thank
7 you.
8
9 (The hearing concluded at 1:00 p.m.) 85
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
7 Christy Snyder
8 Transcriptionist
9 Diaz Data Services, Inc.