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1 COMMONWEALTH OF PENNSYLVANIA HOUSE OF REPRESENTATIVES 2 HUMAN SERVICES COMMITTEE 3 60 EAST WING 4 HARRISBURG, PENNSYLVANIA
5 TUESDAY, APRIL 16, 2015 10:00 A.M. 6 PUBLIC HEARING - THE DISABILITY SERVICES SYSTEM IN 7 PENNSYLVANIA FOR ADULTS WITH DEVELOPMENTAL OR PHYSICAL DISABILITIES 8 BEFORE: HONORABLE GENE DIGIROLAMO, MAJORITY CHAIRMAN 9 HONORABLE ROB KAUFFMAN HONORABLE THOMAS MURT 10 HONORABLE CRAIG STAATS HONORABLE JUDITH WARD 11 HONORABLE ANGEL CRUZ, MINORITY CHAIRMAN HONORABLE MICHELLE BROWNLEE 12 HONORABLE RON WATERS HONORABLE MARTINA WHITE 13
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1 I N D E X
2 OPENING REMARKS By Chairman DiGirolamo 3 - 6 3 PRESENTATION 4 By Kevin Hancock 6 - 10 By Steve Suroviec 10 - 14 5 By Matthew Stinner 15 - 16 By Marisol Ramos 16 - 19 6 By Martine DeLorenzo 19 - 26 By Pam Auer 28 - 33 7 By Julie Skovera 33 - 34 By Diana Deeley 34 - 36 8 By Anna Marie Childress 36 - 41 By Jeff Iseman 41 - 45 9 By Matt Seeley 45 - 49 By Chava Kintisch 51 - 55 10 QUESTIONS FROM COMMITTEE MEMBERS 55 - 60 11 PRESENTATION 12 By Nancy Salandra 60
13 QUESTIONS FROM COMMITTEE MEMBERS 61 - 66
14 PRESENTATION By Shawn Tucker 66 15 By Shawna Aiken 67 - 70 By Sharon 70 - 72 16 CONCLUDING REMARKS 17 By Chairman DiGirolamo 72
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1 P R O C E E D I N G S ------2 CHAIRMAN DIGIROLAMO: If I could just have
3 everybody's attention. We're going to call this meeting of the
4 Human Services Committee to order. And if anybody needs
5 chairs, there are extra chairs. We'll make sure that we get
6 them and bring them out if anybody needs a seat, if we run out
7 of room. So again, welcome to everybody. And I'd like to
8 start the meeting off with the Pledge of Allegiance to the
9 Flag. So if I could ask everyone that can to stand.
10 PLEDGE OF ALLEGIANCE RECITED
11 CHAIRMAN DIGIROLAMO: With that, we have a very
12 important hearing today. Again, I want to welcome everybody.
13 I know some of you have come from a very, very long distance,
14 and I appreciate you all being here. As a matter of fact, I
15 saw a group of people out there at eight o'clock this morning
16 and we had a little conversation, so thank you for coming. And
17 with that, I might give the members who are here today of the
18 Human Services Committee the opportunity to just say hello and
19 let everybody know where they're from. My name is Gene
20 DiGirolamo. I am the Majority Chairman of the Committee. And
21 I call home Bensalem, Bucks County, and the 18th Legislative
22 District. Angel?
23 CHAIRMAN CRUZ: I'm the Minority Chairman,
24 Representative Angel Cruz from Philadelphia, the 180th
25 Legislative District. Good morning to all.
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1 REPRESENTATIVE MURT: Good morning, everyone. My
2 name is Representative Tom Murt. I represent part of
3 Philadelphia and part of Montgomery County.
4 REPRESENTATIVE WATERS: Good morning. I'm
5 Representative Ronald Waters. I have parts of Philadelphia
6 County and Delaware County.
7 REPRESENTATIVE BROWNLEE: Good morning. Michelle
8 Brownlee, the 195th Legislative District in Philadelphia
9 County.
10 REPRESENTATIVE STAATS: Good morning, everyone, and
11 thank you for being here. My name is Craig Staats, and I'm
12 from Bucks County.
13 REPRESENTATIVE WARD: I am Representative Judy Ward.
14 I am from Blair County, the 80th District.
15 REPRESENTATIVE WHITE: Good morning, everyone. I am
16 Martina White, representing the 170th Legislative District of
17 northeast Philadelphia.
18 CHAIRMAN DIGIROLAMO: And I want to give a special
19 welcome today to the new member of the Committee,
20 Representative Martina White, who just won election from
21 Philadelphia. And why don't we give her a round of applause
22 and welcome her?
23 APPLAUSE
24 REPRESENTATIVE WHITE: Thank you. Thank you very
25 much.
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1 CHAIRMAN DIGIROLAMO: Good to have you on the
2 Committee, Martina.
3 REPRESENTATIVE WHITE: Glad to be here.
4 CHAIRMAN DIGIROLAMO: Okay. Let's set up a couple
5 ground rules before we get started. We've got a very ambitious
6 agenda. First, if you notice in the front and the back the red
7 lights, the TV cameras are on. I'm going to assume that PCM is
8 going to pick this hearing up and that we will be on television
9 later on. So just keep that in mind when you're testifying,
10 that we are being taped and the TV cameras are on.
11 The way I'm going to run the hearing today is that,
12 since we have a lot of testifiers, I want to respectfully give
13 them the opportunity to testify. And then at the end of the
14 hearing, if we have time after everyone testifies, we will open
15 it up for questions and answers from the members of the
16 Committee. So that's the way we're going to run the hearing.
17 I have a couple opening comments to get started
18 first. And again, good morning. The focus of today's hearing
19 is the adult disability service system in Pennsylvania. The
20 disability service system can be daunting, as many of you all
21 know, for those without the understanding of how the system is
22 set up and delivered.
23 Today we will hear about the foundation of the
24 services available in Pennsylvania. We will hear from
25 consumers, ID service providers and from the caregivers. We
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1 will also hear what is working, what is not working, and
2 hopefully what we can improve on. And that's why it's
3 important that we have the hearing today.
4 And finally, I want to mention a resolution that
5 I've introduced, and we're going to try to move it out of
6 committee in a couple of weeks or get it for a vote on the
7 floor. And this resolution deals with person-first language in
8 all the departments in the State of Pennsylvania, and it urges
9 Pennsylvania to adopt and utilize the person-first language.
10 So an important resolution. I know that's important to all of
11 you.
12 So with that, let's call up our first set of
13 testifiers. And they are from our newly-named Department of
14 Human Services, and that will be Kevin Hancock, who is the
15 Chief of Staff of the Office of Long-Term Living, and Steve
16 Suroviec, who is the Deputy Secretary of the Office of
17 Developmental Programs. Please, welcome, gentlemen. If you
18 can sit together as a panel, that would be okay. And you can
19 begin your testimony whenever you like.
20 MR. HANCOCK: I just want to make sure my microphone
21 is on. Good morning, Chairmen DiGirolamo and Cruz and members
22 of the House and Human Services Committee and Staff. My name
23 is Kevin Hancock, and I am the Chief of Staff of the Office of
24 Long-Term Living with the Department of Human Services, or DHS.
25 Appearing with me is Steve Suroviec. He is the Deputy
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1 Secretary for the Office of Developmental Programs. And on
2 behalf of the acting Secretary, Ted Dallas, we want to thank
3 you for the opportunity to present testimony regarding an
4 overview of the services provided to individuals with
5 disabilities.
6 In accordance with our vision and mission, the DHS
7 joins Governor Wolf in his commitments to improve quality and
8 availability of community-based services for individuals living
9 with both physical and intellectual disabilities.
10 The proposed fiscal 2015/16 budget includes
11 initiates to reduce waiting lists for programs servicing
12 individuals with intellectual disabilities and home and
13 community-based services settings, as well as expanding
14 services for individuals with physical disabilities and older
15 Pennsylvanians.
16 Some figures associated with the budget, an increase
17 for the budget, $18.9 million to provide support for home and
18 community-based options for 1,000 individuals with intellectual
19 disabilities, $372,000 to provide support for home and
20 community-based options for 50 individuals with autism, $5.7
21 million to provide the opportunity for individuals with mental
22 illness and intellectual disabilities to transfer from
23 institutional placement to home and community-based settings,
24 $16.1 million to support home and community-based options for
25 1,500 individuals with physical disabilities, and $14.9 million
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1 to support home and community-based options for 2,000 older
2 Pennsylvanians.
3 Little details about the program office where I
4 work. The Office of Long-Term Living oversees a budget of $5.5
5 billion and employs more than 200 Commonwealth and contract
6 staff to administer and develop programs serving Pennsylvania's
7 older adults and adults with physical disabilities. The OLTL
8 administers an array of Medical Assistance programs across the
9 long-term care continuum to provide services for these
10 individuals. OLTL's home and community-based services programs
11 assist individuals to remain in settings of their choice,
12 helping them to age in place.
13 OLTL administers six Medicaid home and
14 community-based programs, and they include Aging, AIDS,
15 Attendant Care, Independence, COMMCARE and OBRA, in addition to
16 one State-funded program, the Act 150 program. These programs
17 allow approximately 48,000 individuals to receive long-term
18 living supports and services in their homes and communities.
19 These programs are designed by the Centers for Medicare and
20 Medicaid Services, or CMS, as waivers because certain federal
21 requirements must be waived in order for the State to provide
22 services through MA programs in non-institutional settings.
23 The participants in these programs are served by 98 service
24 coordination entities and are enrolled, certified and monitored
25 by the OLTL.
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1 To provide more detailed information about these
2 programs, the OLTL and the Department of Aging work together to
3 provide individuals over the age of 60 with services through
4 the Aging Waiver. An interested individual can inquire through
5 their local Area Agency on Aging, or AAA, to determine if they
6 meet financial and clinical eligibility requirements to receive
7 home and community-based services.
8 The AIDS Waiver supports those who are 21 years or
9 older of age and with home and community-based services if they
10 are symptomatic with HIV or AIDS. Individuals with physical
11 disabilities meeting the clinical and financial eligibility
12 requirements are provided home and community-based services
13 through the Attendant Care Waiver if they are capable of first
14 selecting or supervising attendant care workers; B, managing
15 their own financial affairs; and C, managing their own legal
16 affairs.
17 The COMMCARE Waiver provides home and
18 community-based services for individuals over the age of 21 who
19 experience a medically-determined diagnosis of traumatic brain
20 injury.
21 The Independence Waiver, an additional waiver,
22 ensures that the home and community-based services for
23 individuals between the ages of 18 and 29 who have physical
24 disabilities with no prior diagnosis of intellectual disability
25 or mental illness.
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1 The OBRA Waiver supplies home and community-based
2 services for individuals also between the ages of 18 and 59
3 with developmental physical disabilities that manifest prior to
4 age 22.
5 And the OLTL also administers a State-funded
6 program, the Act 150 program. The Act 150 program mirrors the
7 Attendant Care Waiver, and it's also a program that supports
8 individuals who are between the ages of 18 and 59.
9 In addition, the OLTL monitors compliance and
10 processes payment for 630 nursing facilities serving
11 49,000-plus residents receiving Medical Assistance. OLTL
12 administers a managed care risk-based capitation program called
13 the LIFE program, in addition to the nursing facilities. And
14 this program is nationally renowned, also known as the PACE
15 program in the Medicare lexicon. And this program, with 18
16 providers, provides comprehensive support and medical services
17 to nearly 4,000 participants across 33 sites.
18 And with that information, I'm going to turn it over
19 to Deputy Secretary Steve Suroviec to begin the discussion on
20 the Office of Developmental Programs.
21 MR. SUROVIEC: Thanks. Good morning. The Office of
22 Developmental Programs works with individuals and families to
23 provide supportive services and care for people with
24 developmental disabilities, including intellectual disabilities
25 and autism. ODP supports Pennsylvanians with disabilities to
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1 achieve greater independence, choice and opportunity in their
2 lives. ODP provides services through three waivers to assist
3 recipients with home and community-based services through the
4 consolidated Waiver, the Person/Family Directed Support Waiver,
5 the Adult Autism Waiver and base funding, which is comprised of
6 state monies only. ODP also provides services through the
7 Adult Autism Community Program, also known as ACAP, a managed
8 care model. In addition, ODP oversees five state centers and a
9 number of private intermediate care facilities for people with
10 intellectual and developmental disabilities and the Autism
11 Services, Education, Resources and Training collaborative, also
12 known as ASERT.
13 The Consolidated Waiver is designed to assist
14 individuals ages three years of age and older who have been
15 diagnosed with an intellectual disability to live more
16 independently in their homes and communities. It provides a
17 variety of services that promote community living, including
18 self-directed service models and traditional agency-based
19 service models.
20 PFDF Waiver provides services to individuals who are
21 age three and older and have an intellectual disability. These
22 services include home and community-based habilitation,
23 personal support, respite, supported employment and
24 transportation among other things. The primary difference
25 between PFDS and the Consolidated is that the PFDS Waiver has a
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1 cap of $30,000 per recipient and does not provide residential
2 habilitation services.
3 The based funding program is a limited amount of
4 state money allocated each year to counties that they may use
5 at their discretion to serve individuals with intellectual
6 disabilities. For those counties who have opted into the Human
7 Services block grant, their based funding is included in their
8 Human Services block grant allocation.
9 In order to register for intellectual disability
10 services an individual needs to take several steps.
11 Individuals or their families can contact ODP's customer
12 service line or they can contact their local county program to
13 start the registration process. Once someone is registered and
14 deemed eligible for services, they are entitled to a supports
15 coordinator. The supports coordinator assists with completing
16 an application for MA, Medical Assistance, helps fill out the
17 home and community-based application and Service Delivery
18 Preference Form, completes the Prioritization of Urgency of
19 Need for Services, also known as PUNS, helps develop an
20 Individual Support Plan, also known as an ISP, to get necessary
21 services, and locates and monitors needed services.
22 The Adult Autism Waiver is a statewide program that
23 currently has the capacity to support 518 individuals who are
24 21 years of age or older who have been diagnosed with an autism
25 spectrum disorder and includes a number of services such as
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1 assistive technology, behavioral specialists, job assessment
2 and finding and respite care.
3 The Adult Community Autism Program is a managed care
4 model that provides physical, behavioral and community services
5 through an integrated approach. It currently has the capacity
6 to support 148 individuals who are 21 years of age and older
7 and who have been diagnosed with autism spectrum disorder and
8 reside in Dauphin, Cumberland, Chester and Lancaster Counties.
9 ASERT collaborative, which stands for Autism
10 Services, Education, Resources and Training, is a statewide
11 initiative and is a key component of the Commonwealth's
12 strategy for supporting individuals with autism and their
13 families across the lifespan. ASERT supports the Department's
14 efforts to continually improve the quality of its programs and
15 connects existing resources and expertise to address regional
16 gaps and effective services and supports. Each year ASERT
17 supports an estimated 40,000 individuals, families and
18 professionals through their clinical services, training and
19 outreach efforts, and their reach continues to expand
20 significantly each year.
21 In addition to the autism programs offered by the
22 Commonwealth, DHS is beginning efforts to partner with the
23 Pennsylvania Insurance Department to improve implementation of
24 Act 62 of 2008, the autism insurance mandate. The law requires
25 many insurers to cover diagnostic assessments and services for
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1 individuals under age 21 with autism, up to $36,000 annually.
2 It also requires DHS to cover services for individuals who do
3 not have private insurance coverage or who reach their annual
4 limit. Our implementation effort will ensure that families,
5 providers and insurers are knowledgeable of the law's
6 requirements and that it is appropriately enforced.
7 Thank you for the opportunity to participate in the
8 hearing today and to explain the services provides to
9 individuals with disabilities across the Commonwealth. We'd be
10 happy to take questions now or later --- at this time or later.
11 CHAIRMAN DIGIROLAMO: Steve and Kevin, thank you. I
12 think we're going to wait for questions later. We'd appreciate
13 if you could both stick around. We anticipate about an hour we
14 should be able to open up for questions. And we do have to be
15 out of the room by 12 o'clock. So thank you for your
16 testimony, and hopefully we can bring you back a little bit
17 later.
18 Okay. Next up we have a Family/Consumer Panel that
19 I might ask to bring up. That consists of Matt Stinner,
20 Marisol Ramos and Martine DeLorenzo. So if I could ask the
21 three of them to come up. And I would also like to note that
22 Matt Stinner was actually in my last newsletter. He had a
23 picture. Matt was on the House floor with his Representative,
24 Representative John Payne. And we took a picture, and I put
25 that picture in my newsletter. Can we get another chair up?
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1 MR. STINNER: Hello. My name is Matthew Stinner. I
2 am a self-advocate consultant for the Arc of PA. I have worked
3 part time at the Arc of PA for nearly two years. During those
4 two years, I've spoken at rallies and committee meetings and
5 have been a guest on the House of Representative Floor.
6 The services and supports I receive from the
7 Department of Human Services allow me the opportunity to live
8 independently in the community. And their supports provide a
9 job shadowing and job coaching and job sampling and independent
10 living skills and the companion support.
11 First community-based job was Hershey's Chocolate
12 World, and the three jobs that I have are cookie baker, spot
13 sweeper, dish room --- and dish room attendant. Other job
14 experience included Hershey's Entertainment Resorts Company and
15 job duties included reader and hand stamper at ZooAmerica.
16 Current employment is a part-time self-advocate consultant at
17 the Arc of PA.
18 UNIDENTIFIED SPEAKER: Ladies and gentlemen, boys
19 and girls, please welcome ---.
20 MR. STINNER: Independent living support aides help
21 me live independently in my apartment in Hershey, PA. My house
22 support aides are Chris and Lisa. They support me in planning
23 and scheduling meal planning and grocery shopping and cat
24 maintenance for my cat, Destiny. Housekeeping, laundry and
25 fitness activities with my trainer, who's name is Cassie.
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1 So to conclude, I also use support services from the
2 Department of Human Services for companion support to support
3 access, recreational activities in the community, including
4 social activities, dances and movies and public transportation
5 training. I am grateful for the support and services that I
6 receive from the Department of Human Services to live
7 independently and pursue my dreams as an advocate for other
8 people with disabilities that cannot speak for themselves.
9 Thank you for the opportunity to educate this committee.
10 CHAIRMAN DIGIROLAMO: Thank you, Matt. Very good
11 testimony.
12 MR. STINNER: Thank you.
13 CHAIRMAN DIGIROLAMO: Appreciate it very much. I'm
14 not sure who's going to go next. Marisol?
15 MS. RAMOS: Yes. Hi. First I want to thank all you
16 for the support that you give to my family. My name is Marisol
17 Ramos. Twenty (20) years ago I came from Puerto Rico with my
18 husband, Jose Ramos. And I have a son and a daughter. You'll
19 see them around here now, Naomi and Justin. And I work for a
20 company called Vision for Equality. And the reason I work with
21 that company is because they help educate families and people
22 with disabilities to learn more about the system and teach
23 every one of us to become advocates. Since my own children
24 have physical and intellectual impairment, I can fully
25 appreciate the importance of what I do. This is the reason
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1 that I choose this line of work.
2 I will tell you first about my daughter, Naomi
3 Ramos. She's now 19 years old. She was born premature at 24
4 weeks old. She's medically fragile. And this means that, due
5 to her physical disability, she's dependent on medical care
6 every day. She also has intellectual impair, and she require a
7 lot of care of around-the-clock supervision.
8 After she was born, the doctor told me that the best
9 place for my daughter is an institution. I really decided
10 against this because this was no life I wanted for my daughter.
11 I wanted her to have a normal life as possible, living at home
12 with parent who love her. I believe that people with
13 disabilities have the right to live at home with their
14 families. Along with the normal parenting skill, I had to
15 learn to take care of my daughter's very special needs.
16 Through the years her need has changed, but the severity of her
17 condition has not. I take cake her everywhere I go. It's not
18 easy. Like you say, they all over the place. But it's
19 important for me. I buy whatever she want. We travel to
20 different places. We take her to Puerto Rico to go see our
21 family. I want her so that she can have a life filled of same
22 opportunity of people here in this room. I want that for my
23 children.
24 Next I want to tell you about Justin. Justin now is
25 13. Anyway, he look like big. Remember he's only 13. When
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1 Justin was two, I realized something is different about him. I
2 don't see him acting like other kids around. So because I had
3 Naomi before, I don't know really what is a typical child. So
4 because he don't like act to other, I take him to the doctor,
5 and he's diagnosed with autism. Already coping with my
6 daughter suffering for severe intellectual disabilities and
7 also physical, his diagnosis is really heartbroken for me and
8 my husband. But I'm worried about the future of Justin because
9 he's on waiting list for the Autism Waiver, and this only ---
10 they give that waiver only when they're adults.
11 The reason I come here today is because I want
12 everybody here to understand how difficult is their --- this
13 day by day. But that is possible. For me and my husband it's
14 truly gratifying to have our children living with us at home.
15 We work together for the benefit of our daughter and son. And
16 I want to maintain this life for the both of them. However,
17 the reality is Naomi's now 19 years old. She's on the waiting
18 list for a long time, and soon she'll go to be 21. Instead of
19 being a time for celebration like a lot of people celebrate
20 when they turn 21, that is a really concern for me and my
21 husband because she's going to lose all the services she have
22 in this moment. My daughter has ten hours nursing every single
23 day because she has a tracheostomy, and Naomi requires 24/7
24 care. Without her services and extra support, either me or my
25 husband have to stay at home, taking care of them. However,
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1 without both of our incomes, it will be hard to maintain the
2 quality of life like our children deserve. Thank you for
3 listening to me and please think in all these families ---
4 please think in all these people that need services to live the
5 type of life they deserve. Thank you.
6 CHAIRMAN DIGIROLAMO: Thank you, Marisol. And
7 before we're done here with the panel, would you go get your
8 son and daughter and bring them back in ---
9 MS. RAMOS: Yes.
10 CHAIRMAN DIGIROLAMO: --- and introduce them so
11 everybody can say hello to them?
12 MS. RAMOS: Okay.
13 CHAIRMAN DIGIROLAMO: That would be terrific.
14 Martine, when you're ready.
15 MS. DELORENZO: My name is Martine DeLorenzo. I'm
16 the single parent of five boys. Three of my boys are still in
17 school and I am their sole source of support. I worked a
18 part-time job for ten years for the Disability Rights Network
19 and recently accepted an offer of full-time employment.
20 I'm here to talk about my family's experience
21 waiting for services. My son Anthony was born in 1994. He
22 developed seizures within hours and was placed on life support.
23 His doctors were hopeless that he would recover. I was
24 prepared for him to die and removed him from all the machines
25 that were keeping him alive. Only he didn't die. I was
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1 assured he was in a vegetative state and should be placed in an
2 institution. I was told he would never walk, never talk or
3 eat, was blind and deaf and wouldn't recognize me. Every day I
4 went to that hospital and insisted I was taking him home until
5 they finally stopped arguing and released him. Our lives were
6 then filled with years of therapy and hospitalizations, not
7 only to keep him alive and well, but to give him the same
8 opportunities as his brothers. I fought our local school
9 district over and over again to educate him in an inclusive
10 setting despite his profound disabilities in the very same
11 classrooms as his typically-developing peers. I appealed to a
12 Senator to force his insurance company to pay for an
13 out-of-state hospitalization for intensive feeding therapy, and
14 he did learn how to eat.
15 None of this cured him, but he made progress no one
16 ever expected. He's always been a curiosity for physicians who
17 are shocked when they come upon an MRI of his brain because it
18 still reads like that of a person in a vegetative state, and
19 clearly he's not. He has a great personality and a fantastic
20 sense of humor. When he was little, he laughed so much I was
21 convinced there was something else wrong with him, but his
22 neurologist assured me he was just a happy kid.
23 Anthony does have an intellectual disability, a
24 seizure disorder, a swallowing disorder. He needs a wheelchair
25 for long distances. He has trouble with depth perception. His
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1 speech is not understandable, which leads to behavior issues.
2 He has a co-occurring depression that requires medication.
3 He's not toilet trained. But because of his inclusion in that
4 typical classroom, Anthony taught himself to stand in
5 kindergarten by watching the other kids and, with therapy,
6 learned how to walk in first grade.
7 He no longer needs a feeding tube, but he eats a
8 pureed diet. He understands people speaking to him and uses a
9 combination of sign language, gestures, and a DynaVox to
10 express himself. He's come so very far, but he still needs
11 total care. When he was little, this was easier. We took
12 turns feeding him and carrying him and bathing him and changing
13 his diaper. As he grew, it became more and more difficult.
14 When he went through puberty, he developed the depression.
15 There wasn't an appropriate extended school year program for
16 him. He was headed for high school and our local school was
17 refusing him entry.
18 He was home from the time he graduated eighth grade
19 in June until January. I had to file for due process to get
20 our local school district to allow him his free and appropriate
21 public education in the least restrictive environment. Because
22 he had been home all day with nothing to do, his depression
23 became so severe that he wouldn't bathe or get out of bed. By
24 the time he attended school in January, I was now dragging him,
25 kicking and screaming, out of the house in the morning to the
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1 school bus. He was physically aggressive towards me and his
2 brothers. His behavior was interfering with my ability to
3 work, and I was the sole financial support of our family,
4 working several part-time jobs to keep a roof over our head.
5 We had to make terrible choices. If he wouldn't go to school,
6 his little brother would have to stay home from school so I
7 could work. After I broke down in his pediatrician's office,
8 the doctor arranged for staffing in our home paid for by his
9 Medicaid.
10 With someone to stay with him, Anthony didn't always
11 get to school, but his brother did, and I could work. After
12 finding good psychiatric care and behavioral supports in our
13 home, Anthony slowly recovered and found happiness in school
14 once again. He graduates this year from a vocational program,
15 where he learned to cook and bake.
16 Unfortunately, this education was not without
17 struggles, and again, I filed for due process. This time he
18 received a settlement which enabled him to obtain a
19 neuropsychiatric evaluation and evaluation and purchase of
20 appropriate communication systems and enough funding to spend
21 his summers with a job coaching agency instead of being babysat
22 in his extended school year.
23 His transition to adult services didn't begin until
24 he was 18. It's supposed to begin when you're 14. He still
25 has had no OVR assessment. No one from the school has
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1 approached me about what he'll be doing when he graduates. His
2 insurance company has been calling me for years, every six
3 months, reminding me to have his PUNS up to date and to apply
4 for services. I was told to be sure I was on the waiting list.
5 They even suggested that I apply for waivers for him, for which
6 I know he doesn't qualify, just so he would have something.
7 They reminded me with each of these phone calls that his
8 services would be ending when he turned 21 this --- March 29th
9 of this year.
10 Though, they didn't know it, but because I am an
11 advocate, I am well aware of the process to apply for waiver
12 and the bureaucracy surrounding it, not that my position made
13 it any easier. We have been in close contact with his supports
14 coordinator for years. His PUNS had him listed in the
15 emergency category, as it should. His supports coordinator
16 gave me a list of items he'd need for the application, and I
17 provided for --- I provided everything for which I'd been
18 asked. They submitted the paperwork to the administrative
19 entity, but there were no assurances. I contacted the Office
20 of Developmental Programs' regional office to ask about funding
21 for children transitioning to adulthood this year. I was told
22 there wasn't any funding put aside. The supports coordinator
23 sent the application to the administrative entity, who
24 responded that there was no funding. The supports coordinator
25 pressed further. The administrative entity suggested there may
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 24
1 be funding for the PFDS waiver, that's the CAPS waiver.
2 Anthony has at least 53 hours a week of home
3 staffing, not including the time he is in school. He received
4 behavior support in our home. In June he will graduate, and I
5 expect him to contribute to society and work. For this he will
6 need staffing and transportation.
7 The PFDS Waiver doesn't even begin to cover his
8 needs. The supports coordinator told the administrative entity
9 that he needed Consolidated Waiver. As if his needs were not
10 clearly outlined in all the evaluations and reports, his IEP,
11 his ISP, his physical and more, the administrative entity again
12 offered the PFDS Waiver. The supports coordinator reminded the
13 AE that Anthony needed 24/7 care with feeding, bathing,
14 toileting, medication, behavior support and a job. The
15 supports coordinator reminded the administrative entity that I,
16 his mother, was not able to care for him due to my job and that
17 we have no natural supports available. His father is not a
18 part of his life. We have no family or neighbors on whom we
19 can rely. We have no time to develop these relationships
20 because every waking minute that I'm not working I am caring
21 for my son.
22 The administrative entity wrote back that the
23 supports coordinator should be focusing on Anthony's needs
24 rather than the needs of his mother. Apparently, I have an
25 irrational need to work along with an irrational expectation
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 25
1 that my son have a life with as much independence as possible,
2 where he is a contributing member of society. I did not spend
3 Anthony's entire life advocating for an everyday life for him
4 only to watch him sit at home, losing all the skills for which
5 he's worked so hard. I cannot bear to think of him lying in
6 bed again, despondent and crying all day, in the grips of
7 depression.
8 Anthony knew his birthday was coming, and he was
9 beyond excited for months prior. The pleasure that he enjoyed
10 was in complete contrast to the agony that I was experiencing,
11 wondering how I would be able to work or, if I couldn't, how I
12 would feed my family or keep our home, wondering if he would
13 finish his school year or if he'd have to stay home alone.
14 The supports coordinator was relentless and
15 literally two days before his 21st birthday he received a
16 letter that state funding was available for the Consolidated
17 Waiver. Lest you think this is a happy ending, I assure you it
18 is not. The transition has been anything but seamless. He
19 lost his behavior support. There was no time to transition to
20 a new provider and no time for his old provider to get
21 qualified without the assurance of funding.
22 He's not here today because he was having a behavior
23 episode this morning with a staff person. He wouldn't get
24 ready for school.
25 He cannot use a job coaching agency until OVR does
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 26
1 their own assessment. There is no longer time to arrange a
2 work/school schedule that will transition him to employment in
3 June. He risks sitting at home, regressing. His supports
4 intensity scale assessment was just --- we just did that
5 yesterday. It wasn't scheduled until later in April. The
6 administrative entity sent me a list of paperwork proving that
7 he was disabled, to be sent to them by April 26th. This list
8 includes each and every item that has already been provided to
9 them in the waiver application.
10 Due to his behavior with me, he requires a
11 residential setting. Finding an appropriate provider with an
12 opening is difficult and time consuming, and the search cannot
13 begin prior to his actual waiver approval, which is unlikely to
14 happen before May. Although he is entitled to institutional
15 care, Anthony has been cared for by his brothers and me his
16 entire life. We have saved the Commonwealth countless dollars.
17 It's shocking to think that after 21 years, the process for
18 transitioning to adulthood would be so fraught with red tape
19 and pointless hoop jumping and trauma. At least I am aware of
20 his rights and able to fight for him. It's heartbreaking to
21 imagine what other families are put through who may not have
22 access to the information that is afforded to me. Thank you.
23 CHAIRMAN DIGIROLAMO: Two very powerful stories.
24 Thank you for sharing. Marisol, can you bring your son and
25 daughter in and --- just so we get a chance to meet them and
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 27
1 say hello? Good job, Matt. Good job. Hi. In a little bit.
2 Not right now. We'll just take --- suspend just for a minute
3 or two so we can see if we can meet Marisol's son and daughter.
4 OFF RECORD DISCUSSION
5 CHAIRMAN DIGIROLAMO: Okay. Hopefully maybe we'll
6 get them back a little bit later. So why don't we go on to our
7 next set of testifiers, and that is Pam Auer from the Center
8 for Independent Living of Central PA and Julie Skovera from
9 Abilities in Motion, AIM. If both of you could come up. And
10 before you get started, Marisol has found her family.
11 MR. RAMOS: Say hi. My name is Justin.
12 CHAIRMAN DIGIROLAMO: This young man was already at
13 the microphone.
14 MR. RAMOS: Hi, ---.
15 MRS. RAMOS: Say I'm Justin.
16 MR. RAMOS: I'm Justin Ramos.
17 MRS. RAMOS: And tell that is my sister, Naomi.
18 MR. RAMOS: And that is my sister, Naomi.
19 CHAIRMAN DIGIROLAMO: Okay. Welcome. And that's
20 your daughter, Marisol?
21 MRS. RAMOS: Yes. Naomi is 19 years old and she
22 looks like ten. And he's 13 and he looks like 19.
23 CHAIRMAN DIGIROLAMO: Welcome. And again --- okay,
24 Pam and Julie, you can begin whenever you're ready. And again,
25 welcome to the both of you.
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1 MS. AUER: Good morning. My name is Pam Auer. I
2 work for the Center for Independent Living of Central
3 Pennsylvania. I've been in the disability community for ---
4 I've been working in the disability community for 26 years,
5 since my college days. I am a person with a disability, and I
6 want to talk about a program that is very important to the
7 disability community, nursing home transition.
8 As the Center for Independent Living, we serve ten
9 counties with nursing home transition. That's under the Office
10 of Long-Term Living. The Department of Human Services' Office
11 of Long-Term Living nursing home transition program, it's
12 critically important to our community as a whole. Secretary
13 Dallas had mentioned in his Department of Human Service budget
14 briefing that a recent poll stated about 95 percent of
15 individuals stated they would rather live in the community than
16 go into a nursing home. And we've known that for a long time
17 as a disability community and appreciate that that information
18 is coming out.
19 Per the OLTL website, the nursing home transition
20 program was developed to assist and empower consumers who want
21 to move from a nursing home back to a home of their choice in
22 the community. And that's done through the Commonwealth's
23 nursing home transition program. It provides the opportunity
24 for individuals and their families or caregivers to be fully
25 informed on all long-term living options, including a full
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 29
1 range of home and community-based services, and they receive
2 the guidance and support needed to make an informed choice
3 about their long-term living services.
4 In carrying out these programs, the Office of
5 Long-Term Living contracts with the Area Agency on Aging for
6 people who are over age 60 and community providers like the
7 Center for Independent Living for individuals who are under the
8 age of 60.
9 The primary goal is to allow an individual who's in
10 a nursing home the ability to decide do they want to stay there
11 or what is the housing choice they want. Can they move back
12 with their family? Are they able to --- do we need to help
13 find them housing and home and community-based services. As a
14 nursing home transition program, we identify barriers that the
15 individual may have and we help them work through those
16 barriers to get back out into the community. And to do this we
17 do it in a team approach. We try to. We work with the family
18 and the consumer uses their voice, what is it that they would
19 like. We work with the social workers and any other community
20 supports out there to make this transition happen. And it's
21 not an easy process and it's not a short process. Sometimes it
22 can be quick if the family --- the individual has a place to go
23 to, but sometimes it can take a long time.
24 One of the primary barriers to nursing home
25 transition is housing, affordable, accessible housing. In the
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1 central Pennsylvania area, at a minimum, it's --- it could be a
2 year --- it's, average, year-and-a-half wait for housing. In
3 some places like Philadelphia it's a lot longer to find
4 housing. We work with the individual to identify housing and
5 then connect the human services, the waiver services, that they
6 may need to live independently. I know, as the Center for
7 Independent Living, we have served --- we've served 250 people
8 in the program. Currently, in the last --- since 2007 we've
9 assisted 87 people to fully transition out into the community.
10 And each month we get referrals from the State through the FDIS
11 system. It's a data program that we connect, and we average 13
12 to 20 referrals a month with the ten counties that we serve.
13 There are people who definitely want out. They
14 desperately want out. And we need to improve the services in
15 order to assist more people to come out. We need more funds.
16 This is my plug for the Community First Choice Option. That
17 will bring more money into the state if we can get the
18 administration to go for it. It's federal funds. That would
19 help transition more people into the community.
20 The program is very cost effective. I hate, you
21 know, putting dollar signs on people, but we are --- well, and
22 there's some --- we need --- there's some --- how some people
23 have one understanding of how much we're able to spend per
24 person, and we are under the understanding that we are allowed
25 up to $4,000 to assist someone to move into the community.
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 31
1 We do as much as we can for as little as we can
2 because we want to be able to get more and more people out.
3 But we don't want to try to skimp on anything, we --- a lot of
4 the people, if we have to find them housing, it's usually
5 because they're in a nursing home and all of their household
6 items, furniture, everything, could be sold, given away or
7 something, because the family thinks that that person is going
8 to stay there. So we need to help support them by helping them
9 find a house and the furnishings and things to live and succeed
10 in the community.
11 The reason I wanted to bring up the fact that there
12 is some differences. We value this program, we love this
13 program, and we think that the people who do the program are
14 great. But there's just some inconsistencies in the program
15 that we'd love to work with the Department on. Some --- I'm
16 sorry. I want to make sure I give you the information. It's
17 hard to work with the program with some of the inconsistencies.
18 But also, as the Center for Independent Living, we're a
19 non-profit and we have to up front all costs that we do. If an
20 individual needs the furnishings, we have to put it up and we
21 wait for a service coordinator who is working with the
22 individual to put it in the system. And it goes from one data
23 system to another in the state before we ever get paid for it.
24 So there is a long delay, which makes it difficult for us to be
25 able to serve the next person. So those are some of the little
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 32
1 things that need to be worked out with the Department to make
2 it run better.
3 On our last transition, where we had to do home
4 modifications, we spent $30,000 and we had to wait months to be
5 able to be reimbursed for that. And those are some things that
6 are burdensome for a provider. Okay.
7 One thing that I wanted to mention regarding the
8 consumers who receive these services is that --- I talked about
9 using the waiver to get out into the community, be able to have
10 your personal care needs met, assistance in cleaning and those
11 kinds of things. With the waivers under OLTL, we have the
12 ability to consumer employ, which advocates fought for and
13 really value the ability to be able to hire, fire or manage
14 your own attendant. And it's difficult with nursing home
15 transition because of Public Partnership, LCC, for an
16 individual to come out of a nursing home and be able to hire
17 their own. There's a large delay. So that makes it difficult.
18 Sometimes that may delay a transition or the
19 individual has to go with an agency in the community that they
20 really may not want to. You know, some people want to be able
21 to --- if they're coming home --- be able to have their
22 attendant that they choose be able to help them with the most
23 personal care that --- the personal care, the bathing,
24 dressing. These are the most personal things happening in
25 their lives. They want somebody they can choose, but they
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 33
1 don't always have that up front. But we need to work on Public
2 Partnership. That's still an issue for the home and
3 community-based services. They're still taking way too long to
4 do the paperwork to employ a consumer. So I just wanted to
5 bring that up. I thank you. I will be here for more
6 questions, and thank you for your time.
7 CHAIRMAN DIGIROLAMO: Thank you, Pam. I'd also like
8 to note --- good job --- Representative Rob Kauffman has joined
9 us also. Rob, welcome.
10 Julie, whenever you're ready you can ---.
11 MS. SKOVERA: Thank you. My name is Julie Skovera.
12 I work for Abilities in Motion as a waiver supervisor. We are
13 the entity --- one of the entities responsible for assisting
14 participants on these specific waivers, such as the Aging
15 Waiver, the OBRA Waiver, COMMCARE, Independence Waiver,
16 Attendant Care Waivers.
17 What we do is assist consumers who are already on
18 these programs in obtaining the services and supports necessary
19 so that they can remain in the community in the least
20 restrictive environment possible. My experience working as a
21 service coordination supervisor for waivers with the Office of
22 Long-Term Living has been positive for many years. I've seen
23 many success stories. They have been helpful. They are
24 professional, supportive, and have given us direction in many
25 different situations, good and bad. They have a very difficult
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 34
1 job to do. When we have issues or concerns regarding health
2 and safety for consumers, the protocol is to alert the Office
3 of Long-Term Living ASAP and then they provide us with the
4 necessary direction to ensure the health and safety of our
5 participants on these waivers.
6 We have a wonderful working relationship with them.
7 Issues that need to be addressed as soon as possible are always
8 followed up on in a prompt, courteous fashion. From our
9 perspective as a service coordination entity, I feel they are
10 very competent, reliable, and have the consumer's best interest
11 at heart. Thank you.
12 CHAIRMAN DIGIROLAMO: Both of you, thank you very
13 much. And we might have some questions a little bit
14 afterwards. You can stick around.
15 MS. SKOVERA: Yep.
16 CHAIRMAN DIGIROLAMO: We appreciate your testimony.
17 Next up we have the Consumer Panel, Ann Marie Childress and
18 Diana Deeley. So if I could have you both come up. And I was
19 just pleasantly surprised by the arrival of Liz Yarnell, who
20 was --- and Liz, stand up. Welcome. And she was on staff for
21 Human Services Committee for a full number of years and just
22 retired. Good to have you back, Liz. Ann Marie and Deanna
23 (sic), you can begin whenever you may.
24 MS. DEELEY: My name is Diana Deeley, and I am here
25 to talk to you about my experience with having an OBRA Waiver.
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1 I have sent in a copy of my speech, so I'm going to make it
2 shortened. But I recently was lucky enough to move from my
3 home in Susquehanna Township into an apartment in Camp Hill,
4 which happens to be located right next to the Center for
5 Independent Living.
6 I have been an advocate with the Center for
7 Independent Living since --- for ten years, and I've had an
8 OBRA Waiver for that many years. I particularly want to bring
9 up a Senate bill --- or House Bill 447, sponsored by Senator
10 Bizzarro (sic) from Erie. This will allow aides who are
11 currently working with agencies to be trained by Registered
12 Nurses to administer medication. The bill that I'm asking that
13 everyone take a look at is a bill for nurse delegation, because
14 right now in the agency model, I am technically not allowed to
15 be given medication. And with me moving out in my own
16 apartment, my parents are not there to help me administer the
17 medication. And I am completely capable of telling my aides
18 what I need, when I need it and everything that they need to
19 do. I just need the Nurse Practices Act changed to allow my
20 aides to be trained --- to allow my aides the rights for
21 certification to be trained to be giving my meds.
22 I now currently do a split waiver services model.
23 Part is through agency and the other part is through PPL.
24 Right now I'm still waiting for an aide to be hired through
25 PPL. It's taking way too long. Because I live on my own, I
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 36
1 had to go to an agency model. The agency is the Center for
2 Independent Living, who, up until four --- I guess it --- up
3 until the beginning of 2013 and the former Governor Tom Corbett
4 decided to give the --- all the rights to PPL to manage, my
5 entire waiver was given to the --- my waiver services were
6 given to the Center for Independent Living in order to do
7 financial management for me. And the Center also does lots of
8 gym --- we have an accessible gym, so everything was running a
9 lot smoother. Thank you very much. I will be in the back for
10 questions later. Again, the House Bill is 473, and it was
11 Senator Bizzarro from Erie. Please take a look at it and
12 approve it. It's very much needed. Thank you very much.
13 CHAIRMAN DIGIROLAMO: Very good, Diana. Thank you
14 very much. Ann Marie?
15 MS. CHILDRESS: I'm really honored to be here. It's
16 the first time that I've been able to testify. I am on the
17 COMMCARE Waiver. That is for people with brain injury who
18 would otherwise not be able to live in the community.
19 I have suffered multiple traumatic brain injuries.
20 I've, in fact, had --- felt my brain move within my skull. I
21 suffer from long and short-term memory, extreme fatigue, focus,
22 concentration, balance issues, loud noises just send me,
23 problems with gait, and I also have an immune --- an autoimmune
24 disease.
25 I am grateful for the COMMCARE Waiver for the things
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1 that it affords me, to live in my home with my husband. I have
2 a personal emergency response system. I was doing community
3 integration when I was first on the waiver. And I have a
4 cognitive therapist, who I continue to see.
5 When I was placed on the COMMCARE Waiver, I was
6 placed on Medicare/Medicaid. My Medicaid is Access. There are
7 very few physicians who will take that. There are doctors who
8 will take Medicare, they will take Medicaid, not too much the
9 Access card, but this is both together. There are very, very
10 few physicians. I cannot even find a neurologist who will take
11 my insurance.
12 I am very grateful because my prescriptions are paid
13 for. When I was on Medicare alone, my husband and I went into
14 very deep debt because of the doughnut hole that has since been
15 changed, I believe. So before I was on Medicare/Medicaid ---
16 and remember, it's not like other Medicaids, it's the Access
17 card --- I was able to see any doctor.
18 When you go onto COMMCARE, they give you a list of
19 physicians about this long who are supposed to take your
20 insurance. I have called numerous --- many, many of them, and
21 they will not take my health insurance. I can go into any
22 hospital I want. However, the problem is, once I'm released,
23 that doctor is not going to see me again. I was being treated
24 by a --- I've gone to like Bryn Mawr, Moss, and I ended up at
25 the University --- Hospital of the University of Pennsylvania
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 38
1 to see a neurologist there. I liked him and he knew his stuff.
2 After I saw him three times, I got a bill for hundreds and
3 hundreds of dollars. And I'm like, well, no, I asked them
4 before I went do you take this insurance. Yes, we do. I
5 called them and said, what is this that I received. And
6 fortunately, I can really still speak for myself. And I was
7 told that he does not take the Medicaid that I have, which is
8 Access, and either I pay the bill of hundreds of dollars or he
9 would not see me again. I've never seen him since. And that
10 is a very big deal.
11 My mouth --- the inside of my mouth looks like a
12 checkerboard because I can't afford to go to a dentist. I only
13 get new glasses if my glasses break. I cannot afford to go to
14 an eye doctor and purchase new glasses. That is something that
15 I would really like to see covered, you know, dental and
16 glasses.
17 Speaking of medical care, I have obstructive sleep
18 apnea. I am required to use a CPAP machine, Continuous
19 Positive Air Pressure. My machine broke in early February, and
20 I went back and forth with the --- well, my husband contacted
21 the manufacturer. I contacted my doctor's office and the
22 provider of the CPAP machine. And I was told, at best, we
23 could get a refurbished one with no guarantee for $438. I'm on
24 Social Security Disability. I don't have that kind of money.
25 So then I contacted my supports coordinator and told her what
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 39
1 happened. She said that that is not something that they
2 usually --- it's not a machine that they usually work with on
3 the COMMCARE Waiver. I said, but this is for my health and it
4 is a medical machine. Well, okay, I'll talk to my supervisor
5 about it. Well, didn't hear anything. Didn't hear anything.
6 Wrote back again. I haven't seen my supervisor yet, but I will
7 meet with her on Thursday. I write back again, because I am
8 tenacious of nothing else, and said what is going on. And she
9 said, well, we have to get special permission to use COMMCARE
10 money to replace your CPAP machine. That was the end of
11 February.
12 Well, then I got news that they were --- that they
13 thought they might be able to get it, but they reapplied to
14 Medicare, which makes no sense. This has nothing to do with
15 Medicare now. Medicare only pays for a new CPAP machine every
16 five years. You're out of luck, unless you can afford to buy a
17 new one, if anything happens to it. So she reapplied to
18 Medicare and, of course, I wrote back. We're at square one.
19 Since then I have heard absolutely nothing,
20 absolutely nothing, and I am angry. These things are put in
21 place for our use. I could never live on my own. I could
22 never live on my own, you know. And I think what happens if my
23 husband should become incapacitated or pass, what am I going to
24 do? I'm already fighting for this. So I've been without a
25 CPAP since mid-February. Still don't have one.
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 40
1 Anyhow, one of the things that I'm asking for is
2 that the procedures of the --- and the Department of Human
3 Services makes sure I get what I need under COMMCARE. And if
4 I'm not getting them, I know a whole lot of other people are
5 not as well.
6 I'm also asking for more money. We always need
7 money, especially when our health is at risk. I do worry about
8 what my future is going to be. Right now I can still speak for
9 myself and I can put up a fairly good fight. The problem is
10 that when I get older and cannot pound on doors and, you know,
11 bother people because I need this or that --- and we know,
12 anybody who's on one of the waivers knows that you ask for it,
13 who knows when you're going to hear from them again, unless you
14 bug them.
15 So anyhow, one of the other things that I'm really
16 very concerned about is my future. My next transition, and I
17 guess it's starting now, is I'm entering the transition into
18 old age. The COMMCARE Waiver says that I will not have to go
19 into a nursing home. I don't think any of us want to have to
20 end up in a nursing home. But will there be the money there
21 for them to come to my home and give me the services that I
22 need and deserve? I have no idea. It's a very, very big deal.
23 And I don't ask for frivolous things. Like this thing with the
24 CPAP machine, that's not frivolous, that's my health, and yet I
25 can't get it. It makes no sense to me. I am fortunate that I
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 41
1 have a great husband, and my kids help us out, too. But what
2 happens when they're not around? I am just very, very
3 passionate that what we are told that we will get is what we
4 will get. I don't want to see it on paper. That means nothing
5 to me. So please, please appropriate more monies towards
6 COMMCARE. Watch what the Human Service Department is doing
7 with that money. Watch what the providers are doing with that
8 money. Are they following the procedures? I can't even
9 express that enough. But I thank you for your time. I didn't
10 get as boisterous as I thought I might, but --- I was a teacher
11 in my former life. But thank you. I'm really honored to be
12 here, and thank you for listening.
13 CHAIRMAN DIGIROLAMO: Thank you. Thank you both for
14 the testimony. Our next panel is Jeff Iseman from the State
15 Independent Living Council. And I see Jeff an awful lot up
16 here in Harrisburg. And also Matt Seeley from the Pennsylvania
17 Living Council and a board member, also. Is Matt here? Okay.
18 Welcome, Jeff.
19 MR. ISEMAN: Thank you.
20 CHAIRMAN DIGIROLAMO: Always good to see you.
21 MR. ISEMAN: Okay.
22 CHAIRMAN DIGIROLAMO: And you can begin whenever
23 you'd like.
24 MR. ISEMAN: Thank you. My name is Jeff Iseman.
25 I'm the program analyst for the Pennsylvania Statewide
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 42
1 Independent Living Council, also known as PA SILC.
2 Pennsylvania SILC's mission is to use our collective power and
3 legal mandate to develop and secure public policies and ensure
4 civil rights and expand options for all persons with
5 disabilities in basically every aspect of life. Some of you
6 are familiar with SILC and CILs and we're cross disability,
7 basically meaning that CILs and SILC help folks with all
8 disabilities, mental health, intellectual disabilities,
9 physical disabilities.
10 SILCs and Centers for Independent Living, or CILs,
11 are authorized for federal states in six U.S. territories under
12 the Federal Rehab Act of 1973. Both SILC and CILs are also
13 noted in Pennsylvania's Act 139 of 1994 as voices for
14 independent living in Pennsylvania. Basically SILC is funded
15 primarily through the Federal Department of Education, Rehab
16 Services Administration, or RSA, which is soon to change to
17 HHS, or Health and Human Services under the Workforce
18 Innovation and Opportunity Act passed last year by Congress.
19 We also get funding through OVR. It's about 90 percent
20 federal, 10 percent state, generally.
21 We work with the 18 Centers for Independent Living,
22 or CILs, with other disability organizations, including a few
23 you've heard from in the room here, Arc chapters, disability
24 rights networks, mental health organizations and other OLTL
25 providers, basically to address independent living issues for
SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 43
1 people with disabilities and seniors, basically all ---
2 basically all ages, all aspects of life. On a national level
3 we collaborate with the National Council of Independent Living,
4 or NCIL, N-C-I-L.
5 Every three years --- and you can find this on our
6 website or we can email it to you --- we do what's called a
7 State Plan for Independent Living, or SPIL. And each three
8 years the issues change, some of the focus. Some of the issues
9 we've covered in the past and folks have testified in this
10 room, issues related to long-term care, preferably home and
11 community-based services, healthcare, accessible housing,
12 employment, transportation, education, employment, emergency
13 preparedness and voting issues for folks with disabilities.
14 Pennsylvania has 18 CILs. Every CIL has four core
15 services. The first core service is basically information
16 referral, or I&R. Basically an individual or their family
17 contacts a CIL and gets information on disability programs.
18 The second core service is advocacy. This can be
19 either individual or a systemic advocacy. An example of an
20 individual advocacy issue may be somebody working with a
21 landlord to basically get a portable ramp for somebody. As Pam
22 mentioned, nursing home transition, so they can live in an
23 apartment. Another example might be some landlords tend to be
24 a little hesitant to rent to folks with disabilities, so you
25 may need to say, hey, this is somebody that will be a steady
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1 payer, particularly if they're getting like a Section 8
2 voucher. We also tend to remind folks like you need to comply
3 with things like the Fair Housing Act and things like that.
4 That's an example of an individual issue.
5 A systemic issue that some of the CILs and others
6 have worked with is, on a county-based level, accessible
7 polling places, which a number of CILs have addressed
8 successfully in their individual counties. We still have over
9 1,600 of them across Pennsylvania.
10 The third service is peer support. Basically it's
11 matching someone else with the same or similar disability to
12 yours. Example, somebody who's lived in a nursing home, when
13 you get somebody who works for the CIL who successfully
14 transitioned out of a nursing home themselves, somebody perhaps
15 who's a quadriplegic, acquired their disability through a
16 driving accident. Let's say you get somebody with a similar
17 disability. They're going to relate to that person more than
18 they would to somebody who didn't have that disability.
19 And the fourth CIL core service is independent
20 living skills. Basically folks who acquire a disability often
21 need to relearn life skills, maybe need to learn to use
22 transportation again or drive. Maybe it could be just walking
23 again, maybe maneuvering living space or maybe your kitchen.
24 Maybe you need to adjust the countertops higher or lower,
25 things like that.
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1 In the near future CILs will be required to do an
2 additional fifth core service that has three components under
3 the Workforce Innovation and Opportunity Act. We're still
4 waiting for the regulations, which should be out later this
5 year or next year. The three points there are basically
6 nursing home or institutional transition, basically
7 transitioning folks out of nursing homes or other stay
8 institutions, like a state center or state hospital. Diversion
9 from institution --- nursing homes or institutional care,
10 basically finding an option up front. Instead of the person
11 going in and having to get them out, you divert them up front,
12 which saves quite a bit of money, usually about one-and-a-half
13 to two or three times over an institutional setting.
14 And the third one is an issue that your members are
15 dealing a lot with right now. It's the transition to adult
16 life for students with disabilities. Basically this would be
17 students that are age 18 or post high school and moving
18 students toward competitive employment, which is also a
19 component of the Workforce Innovation and Opportunity Act.
20 At this --- one other thing I would mention is ---
21 well, I'll turn it over to Matt now and he can fill you in.
22 MR. SEELEY: Good morning, everybody. My name is
23 Matthew Seeley. I'm a board member of the Statewide
24 Independent Living Council. That's the group that Jeff works
25 for. I'm also a board member of the Rehab Council that advises
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1 the Governor and OVR on rehabilitation for people with
2 disabilities.
3 In 1996, I was in a car accident that left me as a
4 quadriplegic, basically what Jeff just described. I'm
5 paralyzed from the chest down. I have paralysis of my arms as
6 well. I can't write. I could write, but it would like a
7 one-year-old would have wrote it, so don't ask me to write any
8 birthday cards or anything like that.
9 I acquired my disability in 1996. And
10 unfortunately, unlike some of the other people here that
11 testified, I chose not to --- had a choice. I chose not to
12 have my family take care of me. It's not that I don't like my
13 family, don't take it that way, but I chose to go into a
14 nursing home. I spent five years in a nursing home. And the
15 woman that spoke just a minute ago on the COMMCARE Waiver, her
16 fears of going into a nursing home, I hope everyone here has
17 those fears. It was not fun. Five years was a long time to
18 live there. I was 21 at the time and I lived with people that
19 were --- I won't list ages because there's nothing wrong with
20 ages, but for a 21-year-old it was quite an environment.
21 But anyway, some of the programs that the people
22 talked about today, nursing home transition, Centers for
23 Independent Living, those were the reasons that got me out. I
24 started going to college when I was in the nursing home. I
25 actually took the nursing home bus to my community college. I
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1 was the only --- I was actually the only person at my college
2 in a wheelchair, and I came there on my big nursing home bus.
3 After I --- when I got my Associate's degree, I got
4 out of the nursing home, moved into my own apartment, kept
5 going to school, got my Bachelor's degree in political science.
6 And at that point I had Jeff's job. When I graduated college,
7 I was in Allentown. I moved out here to Harrisburg. I had
8 Jeff's job before him. And I left that job to go to law
9 school. I'm actually a lawyer now. Yay me. And it's a lot of
10 the programs that people talked about today are the reasons
11 that I'm no longer in a nursing home.
12 Act 150, which I'm sure you guys are well aware of,
13 I pay the fee --- the monthly fee, to get attendants in my
14 home. I have both an agency model attendants, as well as
15 consumer-employed attendants, that come into my home. I hire,
16 I fire them. I'm doing a lot of firing. I wish I was doing
17 more hiring, which unfortunately leads me more to an agency
18 model than a consumer employee model.
19 But back to my --- I really didn't want to read
20 this. I hate being read to, so I'm sure you guys feel the
21 same. But I did receive services from United Cerebral Palsy
22 here in Harrisburg. They do my service coordination. I
23 actually --- unfortunately, I never really received services
24 from the Center for Independent Living to get out of the
25 nursing home. Right now I spent a lot of time in the Center
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1 for Independent Living across the river in Camp Hill. They
2 have an accessible gym there, which is invaluable. And if you
3 know people with disabilities, I would encourage them very much
4 to go to the gym over there. It's very good in terms of
5 socialization as well as --- even though I'm a quadriplegic and
6 I can only move things above my chest, I've been able to get a
7 lot more independence and a lot more physically fit from the
8 gym over there.
9 I did receive attendant services from the Center for
10 Independent Living in Philadelphia, Liberty Resources, years
11 ago. They were the first group that gave me --- or provided
12 the attendants for me.
13 Let me go back. When I had Jeff's job, I was the
14 public policy analyst for the PA SILC. From 2007 to --- I've
15 lost my track.
16 Let me move on to --- the other main agency that got
17 me out of the nursing home was OVR. I mentioned them a couple
18 minutes ago. The Office of Vocational Rehabilitation had a
19 counselor there that was --- I would be living in the nursing
20 home today if it was not for him. His name was Ed Dun --- is.
21 I assume he's still around. He came to visit me in the nursing
22 home more than weekly to push me out of there. I was severely
23 disabled, like I mentioned, and I did not think I could live on
24 my own. And because of him and because of other --- the other
25 services Jeff talked about, peer counseling and things that
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1 CILs generally provide, people in the community that had
2 similar disabilities to me came to the nursing home and
3 basically showed me that I could do it on my own. And even
4 though I did not technically got those services from Centers
5 for Independent Living, Centers for Independent Living do
6 provide those and do help people like me. So I'm sure there's
7 not a lot of --- maybe, I don't want to say I'm sure, maybe
8 there's not another lawyer in a nursing home, but people in
9 nursing homes --- or people with disabilities don't need to
10 live in nursing homes. And I guess that's kind of my story,
11 and I hope that I've shown that to you. I'll hand it back over
12 to Jeff now.
13 MR. ISEMAN: Okay. Thanks, Matt. A couple final
14 points. Half of our 18 centers in Pennsylvania receive state
15 funding through Pennsylvania Labor and Industry or OVR. Matt
16 mentioned OVR, and they're a very key part of keeping people
17 with disabilities employed and just staying in the community
18 instead of a more costly nursing home or institutional care.
19 Basically the home and community-based services, as was
20 mentioned by Kevin Hancock, basically they're funded through
21 the Department of Human Services' OLTL. And for folks that are
22 over 60, you have, as part of Aging, the Options Program. And
23 we mentioned earlier OBRA, COMMCARE, Independence, Attendant
24 Care Waiver, Act 150. Those are all key to keeping folks in
25 the community, which it's usually about one-and-a-half to two
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1 or three times less costly, even if you add in other supports.
2 And there are a lot of other state-funded programs, too, that
3 help people with disabilities and seniors.
4 And just to mention a little more about the CILs,
5 every CIL is a little different. I would encourage your
6 members to visit a Center for Independent Living. We have some
7 CILs, they do the four core --- all them do the four core
8 services, but we have some, like CILCP and Abilities in Motion
9 and Liberty Resources and Voices for Independence that they
10 work with students on their ISPs, Individual Services ---
11 Supports Plan; IEPs, Individual Education Plan. You have CILs
12 that are direct service providers. You have CILs that do
13 supports coordination. And they're all important parts of the
14 piece for folks to remain in the community. So I thank you for
15 your time. And if you have any questions, we can either answer
16 them now or we'll stick around until the end of the hearing.
17 Thank you.
18 CHAIRMAN DIGIROLAMO: Yeah, thanks, Jeff.
19 MR. SEELEY: Thank you.
20 CHAIRMAN DIGIROLAMO: And Matt. Thanks to both of
21 you. Our final testifier of the morning and certainly last but
22 not least is Chava Kintisch, who is the Director of Civic and
23 Governmental Affairs for the Disability Rights Network. Chava,
24 welcome. And you ---
25 MS. KINTISCH: Thank you.
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1 CHAIRMAN DIGIROLAMO: --- can begin.
2 MR. KINTISCH: Thank you. And thank you, Chairman
3 DiGirolamo. And thank you, members of the Committee. We
4 appreciate so much this opportunity to testify before you this
5 morning. My name is Chava Kintisch, the Director of Civic and
6 Government Affairs for the Disability Rights Network of
7 Pennsylvania, or DRN.
8 The Disability Rights Network is the statewide
9 protection and advocacy system for people with disabilities in
10 Pennsylvania. We provide free legal and advocacy services for
11 children, youth and adults with disabilities across the state,
12 people who --- of any age and people with any kind of
13 disability. We help people to access home and community-based
14 services, transportation, housing, education. We help remedy
15 discrimination. And we help provide relief from abuse and
16 neglect in institutions and in the community.
17 The Disability Rights Network receives thousands of
18 requests for help each year across Pennsylvania, in every
19 district, in every one of your districts, and we seek to
20 provide as much help as we can to every person who contacts us.
21 We have three offices. Our main office is here in
22 Harrisburg. And also we have an office in Philadelphia and in
23 Pittsburgh. We have community advocates also, such as Martine
24 DeLorenzo, who also works with people with intellectual
25 disabilities and autism in the community.
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1 As Representative DiGirolamo said this morning, you
2 have heard powerful stories from the witnesses. You've heard
3 compelling stories from family members and from people with
4 disabilities of all ages and all life experiences. And the
5 agencies as well have told you about the services that they
6 offer that are so important for community living, and we thank
7 you for being here this morning, also.
8 You've heard real-life experiences also of people
9 waiting for services, the fears of family members who aren't
10 sure what's going to happen, if their child or loved one is
11 going to get the services they need. And I want to emphasize
12 that you will hear the same stories of your constituents.
13 Every one of the districts across Pennsylvania has thousands of
14 people with disabilities with the same stories, with similar
15 stories, with different stories about our need and our want and
16 our desire to live in the community. There are about 1.8
17 million Pennsylvanians with disabilities.
18 I wanted to talk a little bit about the picture of
19 Pennsylvania as it is currently. First, in terms of the
20 institutionalization of adults, you've heard the witnesses
21 testify this morning that there is a great desire for people
22 with disabilities to live in the community. Currently, in
23 Pennsylvania there are about 964 individuals in five state
24 centers which are public intermediate care facilities in
25 Pennsylvania. There are currently about 4,253 persons under
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1 age 60 in nursing facilities who are on --- who are Medicaid
2 recipients, according to the Office of Long-Term Living. I
3 just wanted to add about state hospitals, which is a different
4 service system, but there are about 1,500 individuals in seven
5 state hospitals across Pennsylvania.
6 You've heard this morning about the need for
7 community services and the emphasis on rebalancing the system
8 to support community living. According to the Office of
9 Long-Term Living, in a recently quarterly report only 49
10 nursing home transitions were taking place and only 62
11 transitions to the community under money follows the person.
12 Because there are about 95 percent of people want to be living
13 and working in the community, we would like to see more
14 transitions take place and more supports for community living.
15 More people can be served in the community with the same amount
16 of funding. And it is the desire of people with disabilities
17 to live in the community and to work in the community like
18 everybody else.
19 Also, there is a great desire and need for services.
20 You heard about a family member whose daughter is on the
21 waiting list. Currently, as of January, there are 14,021
22 individuals on the waiting list for intellectual disability
23 home and community-based waivers. That includes 4,595 in the
24 emergency needs category, meaning that they need services
25 immediately, within six months.
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1 There are just over 1,400 individuals on the Autism
2 Waiver waiting list, but we know that there are about 55,000
3 individuals who are in some sort of system across Pennsylvania.
4 And according to a recent autism census by the Bureau of Autism
5 Services, there could be as many as 133,000 more individuals
6 not in any system, not identified in Pennsylvania, who have
7 autism. The report also said that adults with autism are going
8 to be the greatest growing population. There is a great need
9 also for autism community-based services. And as the
10 Department testified this morning, the Autism Waiver only has
11 about capacity for 518 persons, though.
12 The Office of Long-Term Living serves about 24,800
13 adults with physical and developmental disabilities, including
14 brain injury. That's according to a recent quarterly report.
15 We have been told at the Disability Rights Network that there
16 is a great need for more screening of children, youth and
17 adults for brain injury, a greater need for screening so that
18 they can be identified and receive the services they need to
19 recover from their brain injury in the community.
20 It's budget season. You've heard some requests and
21 some --- requests about budget needs. And I wanted to mention
22 that also the Disability Rights Network does support a budget
23 that provides for full funding for community living for people
24 with disabilities. You heard this morning how important
25 funding is. It's the difference between no services or the
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1 wrong services or the --- or services in the community that
2 will provide full health, full habilitation, full
3 rehabilitation, full community living for people with
4 disabilities.
5 Thank you so much for your time and your
6 consideration. I'm happy to answer any questions. Thank you.
7 CHAIRMAN DIGIROLAMO: Chava, could you sit? I mean,
8 we're going to open it up for questions, and I had a --- my
9 question, I think, was for you. And you know, thank you for
10 your testimony. And you know, realizing that there is not an
11 unlimited amount of money to go into all the different
12 programs, from your perspective, what is the one thing that you
13 would want to tell this committee and tell the people in state
14 government would be the one thing that we could do that would
15 help out the people that you serve the most?
16 MS. KINTISCH: That's a very good question. I'd
17 almost want to take a poll of the disability community here at
18 the hearing because there are so many needs. I think what we
19 --- what we know from people who contact us, that funding for
20 home and community-based waivers are so important. You've
21 heard testimony about the different waivers across
22 Pennsylvania, individuals who are receiving those services and
23 waiting for services. Home and community-based services can be
24 a difference between a lifetime of institutionalization and the
25 ability to live in the community and participate and work and
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1 go to school like everybody else.
2 CHAIRMAN DIGIROLAMO: Okay. Okay. Chava, thank
3 you. Now I want to open it up for questions. Representative
4 Murt, you had your hand up first.
5 REPRESENTATIVE MURT: Thank you, Mr. Chairman.
6 Steve, can I ask you a couple questions if you don't mind?
7 First of all, Steve, thank you for your service to this mission
8 for many, many years. You've done a great job. Long before
9 you ever came into state government you were a great
10 advocate, ---
11 MR. SUROVIEC: Thanks.
12 REPRESENTATIVE MURT: --- devoted. Thank you.
13 MR. SUROVIEC: Appreciate that.
14 REPRESENTATIVE MURT: Your testimony was excellent,
15 Steve. And the one aspect I thought was really good was when
16 you talked about the process of registering for intellectual
17 disability services. It's the first time in eight years that
18 I've been in Harrisburg that anyone's ever walked through that
19 process as cogently as you did.
20 The two questions are this. The supports
21 coordinator, who does the supports coordinator work for, the
22 county, the state, the agency?
23 MR. SUROVIEC: The supports coordinator --- and it
24 depends. A lot of the answers in our system, it always
25 depends. Historically, they've worked for the county. Several
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1 years ago there was a change in the system that required that
2 an individual would have a choice of a supports coordinator.
3 So some counties have supports coordination within their
4 organization, and there also have been other organizations that
5 have sort of cropped up providing support coordination. So
6 it's not a state function, but it's a function that the state
7 would pay for. But it tends to be either a non-profit or it
8 tends to be part of a county.
9 REPRESENTATIVE MURT: Okay. Second question is we
10 haven't discussed it today, but I'm curious whether or not the
11 rural parts of Pennsylvania are underserved relative to
12 programs and services to adults with disabilities.
13 MR. SUROVIEC: I think --- I think the rural areas
14 probably have a commensurate amount of resources depending on
15 their population. So to the extent that there are challenges
16 within urban areas, there's probably challenges within rural
17 areas as well, and perhaps different challenges. So, for
18 example, transportation always seems to be a greater challenge
19 within rural areas, both in terms of just people being able to
20 access their community, access a job. But if you were to line
21 up where resources go, it probably would be commensurate with
22 the population.
23 REPRESENTATIVE MURT: I know down in the southeast
24 we have our challenges, but I can only imagine how difficult it
25 is in some of the more remote parts of Pennsylvania. So thank
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1 you, Mr. Chairman.
2 CHAIRMAN DIGIROLAMO: Representative Waters?
3 REPRESENTATIVE WATERS: Thank you, Mr. Chairman. I
4 have --- I would like to ask Ms. Chava, Esquire, a question
5 about --- a question. You had mentioned --- that number again
6 that you mentioned about the amount of disabled Pennsylvanians
7 was --- what was that again?
8 MS. KINTISCH: About 1.8 million.
9 REPRESENTATIVE WATERS: 1.8. And obviously, that
10 means there's a lot of people who needs the services that
11 aren't getting the services right now. And you also have
12 mentioned that --- about the desire now to have more
13 community-based facilities for people with disabilities. I
14 think it was yesterday there was a report about --- it was a
15 disabled man who was one of the people that realized their
16 rights of the disabled. He was talking about how sometimes
17 people are in a hurry and they maybe run in front of people in
18 wheelchairs or they touch --- sometimes they want to over help
19 and they might help, and he was talking how sensitive the
20 devices are on the wheelchair so that --- and their ability to
21 maneuver.
22 If we do have more people living in the communities,
23 how --- what plan do you have or do you think there needs to be
24 more information provided to the communities where the disabled
25 will be so that they will know how to respect the rights and
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1 the independence of people who are disabled? I mean, do you
2 think that that would also need to be a part of when the
3 program --- hopefully the funding becomes more available to
4 help provide more community-based services for the disabled and
5 for them to have independent living? Do you think that the
6 community needs also to be better informed about their rights
7 or the fact that they are here and how could we help --- make
8 sure that their life is more comfortable --- as comfortable as
9 possible.
10 MS. KINTISCH: Yes, I do, Representative. There is
11 a need for awareness, education and training about disability
12 etiquette. It's a cultural shift that we've been working on
13 for the --- for many, many decades that people with
14 disabilities be in the community, be a part of the community,
15 and there does need to be awareness and education. I know that
16 the Centers for Independent Living do a lot of training and
17 awareness on disability etiquette and awareness. We also do a
18 lot of training and help people with disability discrimination
19 cases.
20 So the Americans with Disabilities Act requires
21 integration. The Individuals with Disabilities Education Act
22 requires inclusion in classrooms. So I think you have the law
23 and definitely you have societal education and attitudes being
24 changed at the same time. I think the Centers for Independent
25 Living and other community-based organizations would be a good
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1 resource to work with on that piece of it.
2 MS. SALANDRA: I just think the best way to do it is
3 to have someone in the community, so the nursing homes and
4 institutions, and they become your neighbors and ---.
5 REPRESENTATIVE WATERS: Can you identify yourself?
6 Can you come to the mic? Mr. Chairman, is that okay?
7 CHAIRMAN DIGIROLAMO: Absolutely.
8 MS. SALANDRA: I'm Nancy Salandra with Liberty
9 Resources in Philadelphia. We're a Center for Independent
10 Living. But the best way to change everything is to have
11 disabled people in the community. We do nursing home
12 transition. We have people living in the community. But you
13 know, a center's a good place, but you need to be out in
14 society.
15 So we change it by being out there, by having a job,
16 by having an apartment, by going to work on the bus, by being a
17 neighbor, by being somebody's husband, wife, having children.
18 So the more we're out in the community, the better off. The
19 startling is so many people are in nursing homes and they don't
20 realize this is it. We show up one day and we're like, do you
21 want to get out and they're like, what, and you know, upset and
22 crying that they realize they can get out.
23 So the way to change it is we need to change the
24 nursing home industry, start closing the beds and start having
25 people out here, and that will change everything.
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1 REPRESENTATIVE WATERS: Thanks. Thank you. Thank
2 you for --- for --- I'm sure that there's a lot of great
3 comments that we have in the audience, and you represent that.
4 Thank you for standing up and --- standing up for this issue.
5 Appreciate you so much.
6 Mr. Chairman, there was one other lady who had spoke
7 earlier, and I don't know --- oh, she had mentioned something
8 about she didn't want to mention costs, being cost effective,
9 because she don't want to put --- you know, put money on human
10 beings, but we live in a society where that is what we need in
11 order for us to provide services.
12 And so I just wanted to say to her, you don't have
13 to apologize. We do need more money and more Pennsylvanians
14 need to know about this issue. I'm glad this is being
15 televised because when we talk about what services are being
16 provided in Pennsylvania, there's --- there are a lot of good
17 services being provided. But they could do so much more with
18 those services if we did have additional funding and additional
19 resources so that it could be provided so all Pennsylvanians
20 could have a great quality of life. I just wanted to say that
21 to her.
22 CHAIRMAN DIGIROLAMO: Thank you.
23 REPRESENTATIVE WATERS: Thank you, Mr. Chairman.
24 CHAIRMAN DIGIROLAMO: Thank you, Ron.
25 Representative Ward?
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1 REPRESENTATIVE WARD: My question is for Steve. And
2 while he comes to the microphone, I would just like to thank
3 everybody here for your attendance and your wonderful
4 testimony. It has been extremely informative. So thank you
5 very, very much.
6 Steve, you had mentioned the Adult Community Autism
7 Program that is available in four counties. I'm going to ask
8 you a question. And I think I know the answer, but I'm going
9 to ask anyway. Why is that not available in other counties?
10 MR. SUROVIEC: Good question. So it's --- it was a
11 program that was started a few years ago. And I think it
12 started as a pilot project, a demonstration project. And it
13 was the first time that a program like this in Pennsylvania was
14 created where essentially it was a managed care model. So you
15 have a lot of integrated services being brought to the
16 individual from multiple funding streams.
17 And I think when it was created, they wanted to
18 pilot it and make sure it was working well. And I think the
19 Bureau of Autism Services has been learning a lot about how
20 it's been operationalized and administered, and they continue
21 to learn. Honestly, it's --- I think it's a good model and I
22 think we're --- what we're doing right now is taking a look at
23 whether or not it's something we can explore and expand
24 statewide or at least into other regions in the state.
25 REPRESENTATIVE WARD: Thank you.
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1 CHAIRMAN DIGIROLAMO: Okay. Any other member?
2 Representative Brownlee?
3 REPRESENTATIVE BROWNLEE: Yes. Thank you, Mr.
4 Chairman. I don't know who this question is for, but maybe
5 somebody can answer this. What I've been hearing for most of
6 the hearing is that what is optimal is for people with
7 disabilities to be able to realize some normalcy in their
8 lives. And we, as a state, should be moving towards that. The
9 other thing I've been hearing is the first step is affordable
10 housing for people with disabilities.
11 So what my question is, if anybody can answer, is
12 how do we move towards that? How do we move as a legislature
13 towards helping the disability community with affordable
14 housing, number one? And once there is affordable housing, how
15 do you get the disability network of people into that housing
16 to be in the community? Has there been --- I do know that
17 there is some. In Philadelphia, where I'm from, certain
18 places, they do have disability --- housing for disability, but
19 there's also some obstacles after that. Can someone in here
20 tell me what those obstacles are?
21 MS. DEELEY: Thank you. My name is Diana Deeley. I
22 was the one that spoke as part of --- in conjunction with Ann's
23 group. I can speak to the second part. I can't speak to the
24 first part. I'm sorry. I can speak to your second part. And
25 what I think needs to happen is the Nurse Practices Act and the
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1 bill that I mentioned really needs to be taken a look at
2 because what that will provide is for attendants to be trained
3 to do medical --- medical things, which will keep costs down.
4 And then we could use the excess costs or the saved costs and
5 put it into other things like nursing home care transition and
6 we can move the money around.
7 REPRESENTATIVE BROWNLEE: Thank you.
8 CHAIRMAN DIGIROLAMO: Jeff, go ahead if you want
9 to ---.
10 MR. ISEMAN: Okay. I can comment a little bit on
11 the housing piece. For folks with physical disabilities,
12 particularly accessible housing, and some of the waivers have
13 what's called assistive technology or home modifications as
14 part of the waivers, but some don't. Example, the Attendant
15 Care Waiver, you don't have assistive technology or home
16 modifications as part of that waiver or the AIDS Waiver or the
17 Act 150 program. And some folks are on waiting lists with
18 their counties, some folks that may or may not need waiver
19 services. If folks can get a home modification --- and the
20 cost varies. If you're in a lower cost area, maybe it's ---
21 I'm going to say $5,000 or $10,000. If you're in a more
22 expensive area, like suburban Philadelphia, you might be
23 spending $20,000, $30,000, a little more.
24 I think one of the things that's in the Governor's
25 budget is to address some of those housing needs. If you look
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1 in --- example, DCED, there's a line item called Keystone
2 Communities. And one of the programs that's in there is the
3 Pennsylvania Accessible Housing Program. And folks may not see
4 just looking at that line item you have to drill down and ask
5 DCED about it, but they generally use about 15 to 20 percent of
6 the money in there. And the Governor put an increase from ---
7 it was under $5 million. It's up to $21 million. So about a
8 third --- about a fifth of those funds will be used.
9 There's also some money in the PHFA budget from the
10 first time for mixed-use developments, which also include
11 special needs. The folks can get accessible units. That's a
12 big deal. Not everybody with a disability needs that, but
13 folks with mobility issues, which I would also include frail
14 elderly, need that.
15 In terms of how that works out, very briefly, is
16 lobbyists working with your local housing authorities, your
17 community development agencies, community action agencies,
18 whoever has the home modifications contracts. Some of the
19 counties have waiting lists for these programs, and some
20 counties say they don't have the staff to really keep track of
21 the home modifications, but affordable, accessible grade
22 housing is a model that a lot of us have worked on for a number
23 of years. I also want to give a quick shout-out to Lehigh
24 Valley Center for Independent Living, who's here. Thank you.
25 MS. TUCKER: Hello. Shawn Tucker, Liberty Resources
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1 of Philadelphia. And you said you're from Philadelphia?
2 REPRESENTATIVE BROWNLEE: Yes.
3 MS. TUCKER: Because we need a lot more accessible
4 integrative housing. And the first thing we need is to have
5 disabled people at the table when they're building the houses
6 because they're not accessible because an apple is not a pie
7 until you make it. You can't make it if you don't know how to
8 make an apple pie, because not all of us like cinnamon and
9 nutmeg. So that's what we need.
10 And we need people to stop looking at us when we
11 appear like they've never seen us before and surprised that we
12 all came out together in droves, and you don't have disabled
13 people in your family because we wasn't all born like this.
14 You have a stroke, surprise, you're disabled now. You walk
15 with a cane, surprise, you're disabled. So we need housing.
16 We need transportation. Everything that you take for granted,
17 we need it every single day because, guess what, our lives
18 depend on it.
19 Cross disabilities. Don't single out one like
20 autism. Don't single out intellectual disability. Every last
21 one of us. We're all together. Don't give money to
22 intellectual and don't give it to physical. Give it to all of
23 us or don't give it to none of us.
24 REPRESENTATIVE BROWNLEE: Thank you.
25 MS. TUCKER: Thank you.
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1 CHAIRMAN DIGIROLAMO: You're welcome. Thank you.
2 MS. AIKEN: Hello. My name is Shawna Aiken, and I'm
3 here today from Erie, Pennsylvania. I happen to be a center
4 director. And a lot of what we talked about today I want to
5 illustrate in the story of one man. And I have his story and
6 his picture and his permission to share it.
7 We are, as a Center for Independent Living, a
8 nursing home transition provider. We've been working with a
9 young man who, a year-and-a-half ago, was in an automobile
10 accident. As a result of that accident, spent a significant
11 amount of time in the hospital, then a rehab facility, then a
12 nursing facility. We have been working with him for months to
13 get him out of an institution in Crawford County.
14 We have his home. We have his services all lined
15 up. One problem is that he's a quad and he needs intermittent
16 catheterization. Intermittent catheterization requires that a
17 nurse right now in Pennsylvania, the way the law is written
18 currently, has to come to him four to six times a day to
19 intermittently catheterize him so he can urinate. Also so he
20 can have a bowel movement, he must have a bowel routine.
21 We have his housing in place. We have his services
22 in place for his attendant care other than that service. We
23 had his nursing agency in place. And the day before he was
24 supposed to transition the nursing agency said they didn't have
25 the staff to provide his catheterization, so they bailed on him
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1 and delayed his transition. We have since been looking for a
2 nursing agency to provide this very common task, by the way, to
3 this gentleman. But because Pennsylvania changed the rules and
4 does not allow an agency like Voices for Independence to
5 perform that function, we can't do that for him.
6 The Department of Health says that a nurse must
7 perform that function. We are asking and you've heard today
8 that Pennsylvania develop a nurse delegation law. I'm from
9 Erie. I've worked with Representative Fabrizio on the law that
10 is currently --- that you have for current consideration. This
11 would prevent unnecessarily institutionalization. This
12 gentleman cannot go home. I paid for his rent in April because
13 on March 29th the agency bailed. We have 15 days --- 14 days
14 to find an agency that's willing to work for him to provide the
15 catheterization and the bowel routine or he can't go home in
16 April either.
17 Right now this gentleman is suicidal. He's
18 threatening to leave AMA, and the way he's planning on meeting
19 his need is by going to the ER four to six times a day to be
20 catheterized. Talk about the uncompensated medical care that
21 will have to happen to provide him that service if he's
22 successful in achieving that. And Pennsylvania will eat those
23 costs. Please take seriously the issue of nurse delegation
24 because you know what bothers me the most about this is that
25 people who are using Public Partnership under the
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1 consumer-directed model can hire anybody they want to provide
2 catheterization and a suppository on a bowel routine. They can
3 train them themselves to do it. But I, as a director of an
4 agency who has an attendant care license, can't have my nurses
5 --- I have two --- train and delegate that activity to a
6 qualified attendant that they believe is qualified as it stands
7 today. Please help us change that. Please help us figure out
8 how to get Tom and others like him home.
9 CHAIRMAN DIGIROLAMO: Thank you very much.
10 Appreciate ---.
11 MS. TUCKER: The sad thing is that Tom isn't the
12 only one. There's quite a few like this that are hanging on by
13 a thread.
14 MS. AIKEN: I also want you to know that, as I sat
15 here today, we got notification from the nursing home
16 transition team within the Office of Long-Term Living that from
17 this day forward --- and I hope I'm wrong about this. I'm
18 going to investigate while I'm here this afternoon --- but from
19 this day forward, the nursing home transition teams can't
20 intervene with somebody --- such as myself, I use attendant
21 care every day. I wouldn't be sitting here if somebody didn't
22 come with me from Erie to help me get dressed and get me here,
23 okay.
24 And I learned that if I go into a nursing home
25 tomorrow, because I'm already a recipient of service, I can't
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1 get nursing home transition services for 180 days. Now, that's
2 a new thing. And that --- we were just told to suspend serving
3 someone who we are currently serving who was in the community,
4 ended up in a nursing home, and now we can't serve him again
5 until he's there for 180 days. I don't want to be in a
6 situation where something happens to my health, and because I'm
7 on Act 150 I have to wait six months in a nursing home to get
8 back out before I can have support services. So if, in fact,
9 that's true, please stop that now, because that's going to
10 impact thousands of people with disabilities in Pennsylvania.
11 CHAIRMAN DIGIROLAMO: Okay. Thank you. And
12 unfortunately, we've run out of time, but I want to thank you
13 all for your wonderful ---. Go ahead.
14 SHARON: My name is Sharon. I'm the mother of the
15 committee --- and he should be at the table. But he's been
16 raising his hand forever. And all he wants to say is his name.
17 CHAIRMAN DIGIROLAMO: Go ahead.
18 SHARON: Tell them your name.
19 CHAIRMAN DIGIROLAMO: Turn the microphone on.
20 There's a button down at the bottom.
21 SHARON: But you all heard me; right? I'm usually
22 pretty loud. And all's I would like to say is I'm here for
23 families that you will never see because they're too busy doing
24 it every day, and they --- and as --- and Self-Advocacy Night
25 is when --- I'm a mom. I'm a family member. I go out and talk
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1 to family members, who all they say is somebody give us
2 information. You have people working, support coordinators and
3 people in different agencies. Somebody tell us what's out
4 there, how to use it and what to do if something goes wrong.
5 And while everybody's saying they're doing that,
6 there's too many people, too many families I have met --- I've
7 walked in and they're like I didn't know that. I didn't know
8 transition started at 14. Nobody tells me that. I didn't know
9 that I could get certain services. All I want to do --- if I
10 could get one thing, I --- like a family said, if I can get
11 one-day break, I would be happy. And they can get 30 days a
12 break, but no one's telling them that. And people are paid to
13 go into their homes and bring them the information.
14 So you know what, I'll do it. You probably won't
15 have to pay me as much. So I think that at the grass-root
16 level having families go out and talk to other families, answer
17 those questions, because we have people doing trainings, but
18 they're talking in a language that no one understands. But
19 I'll do it and other family members like me will do it. You
20 want to tell them your name.
21 JOSH: Josh.
22 SHARON: Joshua.
23 CHAIRMAN DIGIROLAMO: Do you have more?
24 JOSH: Yes.
25 CHAIRMAN DIGIROLAMO: Okay. Why don't we give the
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1 two young men a little round of applause? And again, we heard
2 some great, powerful, compelling testimony today. I want to
3 thank everybody for being here. Kevin and Steve, thank you
4 both for staying. I'm sure you've heard a lot. Probably a lot
5 of this stuff you have heard before, maybe some things that are
6 new.
7 And as Steve and Kevin testified, Governor Wolf, in
8 his budget, has proposed I think a significant amount of
9 additional funding to take care of some of the services that
10 you get. And you've got my commitment that not only myself,
11 and I think I'm speaking for everyone on the committee, that
12 we're going to do everything that we can as we go through the
13 budget process to make sure that additional funding stays in
14 the final budget, and if any way possible, to get additional
15 amount of dollars into the budget to take care of you. You
16 have my commitment that we're going to do our best to do that.
17 So again, thank you, God bless you, and this ends the hearing
18 today. Safe trip home, everyone.
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20 HEARING ADJOURNED AT 11:59 A.M.
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4 transcribed from the recorded audio on 04/16/2015 and that
5 I attest that this transcript is a true and accurate record
6 of the proceeding to the best of my ability.
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