1 COMMONWEALTH OF PENNSYLVANIA HOUSE OF …SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 5...
Transcript of 1 COMMONWEALTH OF PENNSYLVANIA HOUSE OF …SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 5...
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COMMONWEALTH OF PENNSYLVANIAHOUSE OF REPRESENTATIVES
HUMAN SERVICES COMMITTEE
60 EAST WINGHARRISBURG, PENNSYLVANIA
TUESDAY, APRIL 16, 201510:00 A.M.
PUBLIC HEARING - THE DISABILITY SERVICES SYSTEM INPENNSYLVANIA FOR ADULTS WITH DEVELOPMENTAL OR PHYSICAL
DISABILITIES
BEFORE: HONORABLE GENE DIGIROLAMO, MAJORITY CHAIRMANHONORABLE ROB KAUFFMANHONORABLE THOMAS MURTHONORABLE CRAIG STAATSHONORABLE JUDITH WARDHONORABLE ANGEL CRUZ, MINORITY CHAIRMANHONORABLE MICHELLE BROWNLEEHONORABLE RON WATERSHONORABLE MARTINA WHITE
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I N D E X
OPENING REMARKSBy Chairman DiGirolamo 3 - 6
PRESENTATIONBy Kevin Hancock 6 - 10By Steve Suroviec 10 - 14By Matthew Stinner 15 - 16By Marisol Ramos 16 - 19By Martine DeLorenzo 19 - 26By Pam Auer 28 - 33By Julie Skovera 33 - 34By Diana Deeley 34 - 36By Anna Marie Childress 36 - 41By Jeff Iseman 41 - 45By Matt Seeley 45 - 49By Chava Kintisch 51 - 55
QUESTIONS FROM COMMITTEE MEMBERS 55 - 60
PRESENTATIONBy Nancy Salandra 60
QUESTIONS FROM COMMITTEE MEMBERS 61 - 66
PRESENTATIONBy Shawn Tucker 66By Shawna Aiken 67 - 70By Sharon 70 - 72
CONCLUDING REMARKSBy Chairman DiGirolamo 72
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P R O C E E D I N G S-----------------------------------------------------------
CHAIRMAN DIGIROLAMO: If I could just have
everybody's attention. We're going to call this meeting of the
Human Services Committee to order. And if anybody needs
chairs, there are extra chairs. We'll make sure that we get
them and bring them out if anybody needs a seat, if we run out
of room. So again, welcome to everybody. And I'd like to
start the meeting off with the Pledge of Allegiance to the
Flag. So if I could ask everyone that can to stand.
PLEDGE OF ALLEGIANCE RECITED
CHAIRMAN DIGIROLAMO: With that, we have a very
important hearing today. Again, I want to welcome everybody.
I know some of you have come from a very, very long distance,
and I appreciate you all being here. As a matter of fact, I
saw a group of people out there at eight o'clock this morning
and we had a little conversation, so thank you for coming. And
with that, I might give the members who are here today of the
Human Services Committee the opportunity to just say hello and
let everybody know where they're from. My name is Gene
DiGirolamo. I am the Majority Chairman of the Committee. And
I call home Bensalem, Bucks County, and the 18th Legislative
District. Angel?
CHAIRMAN CRUZ: I'm the Minority Chairman,
Representative Angel Cruz from Philadelphia, the 180th
Legislative District. Good morning to all.
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REPRESENTATIVE MURT: Good morning, everyone. My
name is Representative Tom Murt. I represent part of
Philadelphia and part of Montgomery County.
REPRESENTATIVE WATERS: Good morning. I'm
Representative Ronald Waters. I have parts of Philadelphia
County and Delaware County.
REPRESENTATIVE BROWNLEE: Good morning. Michelle
Brownlee, the 195th Legislative District in Philadelphia
County.
REPRESENTATIVE STAATS: Good morning, everyone, and
thank you for being here. My name is Craig Staats, and I'm
from Bucks County.
REPRESENTATIVE WARD: I am Representative Judy Ward.
I am from Blair County, the 80th District.
REPRESENTATIVE WHITE: Good morning, everyone. I am
Martina White, representing the 170th Legislative District of
northeast Philadelphia.
CHAIRMAN DIGIROLAMO: And I want to give a special
welcome today to the new member of the Committee,
Representative Martina White, who just won election from
Philadelphia. And why don't we give her a round of applause
and welcome her?
APPLAUSE
REPRESENTATIVE WHITE: Thank you. Thank you very
much.
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CHAIRMAN DIGIROLAMO: Good to have you on the
Committee, Martina.
REPRESENTATIVE WHITE: Glad to be here.
CHAIRMAN DIGIROLAMO: Okay. Let's set up a couple
ground rules before we get started. We've got a very ambitious
agenda. First, if you notice in the front and the back the red
lights, the TV cameras are on. I'm going to assume that PCM is
going to pick this hearing up and that we will be on television
later on. So just keep that in mind when you're testifying,
that we are being taped and the TV cameras are on.
The way I'm going to run the hearing today is that,
since we have a lot of testifiers, I want to respectfully give
them the opportunity to testify. And then at the end of the
hearing, if we have time after everyone testifies, we will open
it up for questions and answers from the members of the
Committee. So that's the way we're going to run the hearing.
I have a couple opening comments to get started
first. And again, good morning. The focus of today's hearing
is the adult disability service system in Pennsylvania. The
disability service system can be daunting, as many of you all
know, for those without the understanding of how the system is
set up and delivered.
Today we will hear about the foundation of the
services available in Pennsylvania. We will hear from
consumers, ID service providers and from the caregivers. We
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will also hear what is working, what is not working, and
hopefully what we can improve on. And that's why it's
important that we have the hearing today.
And finally, I want to mention a resolution that
I've introduced, and we're going to try to move it out of
committee in a couple of weeks or get it for a vote on the
floor. And this resolution deals with person-first language in
all the departments in the State of Pennsylvania, and it urges
Pennsylvania to adopt and utilize the person-first language.
So an important resolution. I know that's important to all of
you.
So with that, let's call up our first set of
testifiers. And they are from our newly-named Department of
Human Services, and that will be Kevin Hancock, who is the
Chief of Staff of the Office of Long-Term Living, and Steve
Suroviec, who is the Deputy Secretary of the Office of
Developmental Programs. Please, welcome, gentlemen. If you
can sit together as a panel, that would be okay. And you can
begin your testimony whenever you like.
MR. HANCOCK: I just want to make sure my microphone
is on. Good morning, Chairmen DiGirolamo and Cruz and members
of the House and Human Services Committee and Staff. My name
is Kevin Hancock, and I am the Chief of Staff of the Office of
Long-Term Living with the Department of Human Services, or DHS.
Appearing with me is Steve Suroviec. He is the Deputy
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Secretary for the Office of Developmental Programs. And on
behalf of the acting Secretary, Ted Dallas, we want to thank
you for the opportunity to present testimony regarding an
overview of the services provided to individuals with
disabilities.
In accordance with our vision and mission, the DHS
joins Governor Wolf in his commitments to improve quality and
availability of community-based services for individuals living
with both physical and intellectual disabilities.
The proposed fiscal 2015/16 budget includes
initiates to reduce waiting lists for programs servicing
individuals with intellectual disabilities and home and
community-based services settings, as well as expanding
services for individuals with physical disabilities and older
Pennsylvanians.
Some figures associated with the budget, an increase
for the budget, $18.9 million to provide support for home and
community-based options for 1,000 individuals with intellectual
disabilities, $372,000 to provide support for home and
community-based options for 50 individuals with autism, $5.7
million to provide the opportunity for individuals with mental
illness and intellectual disabilities to transfer from
institutional placement to home and community-based settings,
$16.1 million to support home and community-based options for
1,500 individuals with physical disabilities, and $14.9 million
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to support home and community-based options for 2,000 older
Pennsylvanians.
Little details about the program office where I
work. The Office of Long-Term Living oversees a budget of $5.5
billion and employs more than 200 Commonwealth and contract
staff to administer and develop programs serving Pennsylvania's
older adults and adults with physical disabilities. The OLTL
administers an array of Medical Assistance programs across the
long-term care continuum to provide services for these
individuals. OLTL's home and community-based services programs
assist individuals to remain in settings of their choice,
helping them to age in place.
OLTL administers six Medicaid home and
community-based programs, and they include Aging, AIDS,
Attendant Care, Independence, COMMCARE and OBRA, in addition to
one State-funded program, the Act 150 program. These programs
allow approximately 48,000 individuals to receive long-term
living supports and services in their homes and communities.
These programs are designed by the Centers for Medicare and
Medicaid Services, or CMS, as waivers because certain federal
requirements must be waived in order for the State to provide
services through MA programs in non-institutional settings.
The participants in these programs are served by 98 service
coordination entities and are enrolled, certified and monitored
by the OLTL.
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To provide more detailed information about these
programs, the OLTL and the Department of Aging work together to
provide individuals over the age of 60 with services through
the Aging Waiver. An interested individual can inquire through
their local Area Agency on Aging, or AAA, to determine if they
meet financial and clinical eligibility requirements to receive
home and community-based services.
The AIDS Waiver supports those who are 21 years or
older of age and with home and community-based services if they
are symptomatic with HIV or AIDS. Individuals with physical
disabilities meeting the clinical and financial eligibility
requirements are provided home and community-based services
through the Attendant Care Waiver if they are capable of first
selecting or supervising attendant care workers; B, managing
their own financial affairs; and C, managing their own legal
affairs.
The COMMCARE Waiver provides home and
community-based services for individuals over the age of 21 who
experience a medically-determined diagnosis of traumatic brain
injury.
The Independence Waiver, an additional waiver,
ensures that the home and community-based services for
individuals between the ages of 18 and 29 who have physical
disabilities with no prior diagnosis of intellectual disability
or mental illness.
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The OBRA Waiver supplies home and community-based
services for individuals also between the ages of 18 and 59
with developmental physical disabilities that manifest prior to
age 22.
And the OLTL also administers a State-funded
program, the Act 150 program. The Act 150 program mirrors the
Attendant Care Waiver, and it's also a program that supports
individuals who are between the ages of 18 and 59.
In addition, the OLTL monitors compliance and
processes payment for 630 nursing facilities serving
49,000-plus residents receiving Medical Assistance. OLTL
administers a managed care risk-based capitation program called
the LIFE program, in addition to the nursing facilities. And
this program is nationally renowned, also known as the PACE
program in the Medicare lexicon. And this program, with 18
providers, provides comprehensive support and medical services
to nearly 4,000 participants across 33 sites.
And with that information, I'm going to turn it over
to Deputy Secretary Steve Suroviec to begin the discussion on
the Office of Developmental Programs.
MR. SUROVIEC: Thanks. Good morning. The Office of
Developmental Programs works with individuals and families to
provide supportive services and care for people with
developmental disabilities, including intellectual disabilities
and autism. ODP supports Pennsylvanians with disabilities to
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achieve greater independence, choice and opportunity in their
lives. ODP provides services through three waivers to assist
recipients with home and community-based services through the
consolidated Waiver, the Person/Family Directed Support Waiver,
the Adult Autism Waiver and base funding, which is comprised of
state monies only. ODP also provides services through the
Adult Autism Community Program, also known as ACAP, a managed
care model. In addition, ODP oversees five state centers and a
number of private intermediate care facilities for people with
intellectual and developmental disabilities and the Autism
Services, Education, Resources and Training collaborative, also
known as ASERT.
The Consolidated Waiver is designed to assist
individuals ages three years of age and older who have been
diagnosed with an intellectual disability to live more
independently in their homes and communities. It provides a
variety of services that promote community living, including
self-directed service models and traditional agency-based
service models.
PFDF Waiver provides services to individuals who are
age three and older and have an intellectual disability. These
services include home and community-based habilitation,
personal support, respite, supported employment and
transportation among other things. The primary difference
between PFDS and the Consolidated is that the PFDS Waiver has a
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cap of $30,000 per recipient and does not provide residential
habilitation services.
The based funding program is a limited amount of
state money allocated each year to counties that they may use
at their discretion to serve individuals with intellectual
disabilities. For those counties who have opted into the Human
Services block grant, their based funding is included in their
Human Services block grant allocation.
In order to register for intellectual disability
services an individual needs to take several steps.
Individuals or their families can contact ODP's customer
service line or they can contact their local county program to
start the registration process. Once someone is registered and
deemed eligible for services, they are entitled to a supports
coordinator. The supports coordinator assists with completing
an application for MA, Medical Assistance, helps fill out the
home and community-based application and Service Delivery
Preference Form, completes the Prioritization of Urgency of
Need for Services, also known as PUNS, helps develop an
Individual Support Plan, also known as an ISP, to get necessary
services, and locates and monitors needed services.
The Adult Autism Waiver is a statewide program that
currently has the capacity to support 518 individuals who are
21 years of age or older who have been diagnosed with an autism
spectrum disorder and includes a number of services such as
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assistive technology, behavioral specialists, job assessment
and finding and respite care.
The Adult Community Autism Program is a managed care
model that provides physical, behavioral and community services
through an integrated approach. It currently has the capacity
to support 148 individuals who are 21 years of age and older
and who have been diagnosed with autism spectrum disorder and
reside in Dauphin, Cumberland, Chester and Lancaster Counties.
ASERT collaborative, which stands for Autism
Services, Education, Resources and Training, is a statewide
initiative and is a key component of the Commonwealth's
strategy for supporting individuals with autism and their
families across the lifespan. ASERT supports the Department's
efforts to continually improve the quality of its programs and
connects existing resources and expertise to address regional
gaps and effective services and supports. Each year ASERT
supports an estimated 40,000 individuals, families and
professionals through their clinical services, training and
outreach efforts, and their reach continues to expand
significantly each year.
In addition to the autism programs offered by the
Commonwealth, DHS is beginning efforts to partner with the
Pennsylvania Insurance Department to improve implementation of
Act 62 of 2008, the autism insurance mandate. The law requires
many insurers to cover diagnostic assessments and services for
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individuals under age 21 with autism, up to $36,000 annually.
It also requires DHS to cover services for individuals who do
not have private insurance coverage or who reach their annual
limit. Our implementation effort will ensure that families,
providers and insurers are knowledgeable of the law's
requirements and that it is appropriately enforced.
Thank you for the opportunity to participate in the
hearing today and to explain the services provides to
individuals with disabilities across the Commonwealth. We'd be
happy to take questions now or later --- at this time or later.
CHAIRMAN DIGIROLAMO: Steve and Kevin, thank you. I
think we're going to wait for questions later. We'd appreciate
if you could both stick around. We anticipate about an hour we
should be able to open up for questions. And we do have to be
out of the room by 12 o'clock. So thank you for your
testimony, and hopefully we can bring you back a little bit
later.
Okay. Next up we have a Family/Consumer Panel that
I might ask to bring up. That consists of Matt Stinner,
Marisol Ramos and Martine DeLorenzo. So if I could ask the
three of them to come up. And I would also like to note that
Matt Stinner was actually in my last newsletter. He had a
picture. Matt was on the House floor with his Representative,
Representative John Payne. And we took a picture, and I put
that picture in my newsletter. Can we get another chair up?
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MR. STINNER: Hello. My name is Matthew Stinner. I
am a self-advocate consultant for the Arc of PA. I have worked
part time at the Arc of PA for nearly two years. During those
two years, I've spoken at rallies and committee meetings and
have been a guest on the House of Representative Floor.
The services and supports I receive from the
Department of Human Services allow me the opportunity to live
independently in the community. And their supports provide a
job shadowing and job coaching and job sampling and independent
living skills and the companion support.
First community-based job was Hershey's Chocolate
World, and the three jobs that I have are cookie baker, spot
sweeper, dish room --- and dish room attendant. Other job
experience included Hershey's Entertainment Resorts Company and
job duties included reader and hand stamper at ZooAmerica.
Current employment is a part-time self-advocate consultant at
the Arc of PA.
UNIDENTIFIED SPEAKER: Ladies and gentlemen, boys
and girls, please welcome ---.
MR. STINNER: Independent living support aides help
me live independently in my apartment in Hershey, PA. My house
support aides are Chris and Lisa. They support me in planning
and scheduling meal planning and grocery shopping and cat
maintenance for my cat, Destiny. Housekeeping, laundry and
fitness activities with my trainer, who's name is Cassie.
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So to conclude, I also use support services from the
Department of Human Services for companion support to support
access, recreational activities in the community, including
social activities, dances and movies and public transportation
training. I am grateful for the support and services that I
receive from the Department of Human Services to live
independently and pursue my dreams as an advocate for other
people with disabilities that cannot speak for themselves.
Thank you for the opportunity to educate this committee.
CHAIRMAN DIGIROLAMO: Thank you, Matt. Very good
testimony.
MR. STINNER: Thank you.
CHAIRMAN DIGIROLAMO: Appreciate it very much. I'm
not sure who's going to go next. Marisol?
MS. RAMOS: Yes. Hi. First I want to thank all you
for the support that you give to my family. My name is Marisol
Ramos. Twenty (20) years ago I came from Puerto Rico with my
husband, Jose Ramos. And I have a son and a daughter. You'll
see them around here now, Naomi and Justin. And I work for a
company called Vision for Equality. And the reason I work with
that company is because they help educate families and people
with disabilities to learn more about the system and teach
every one of us to become advocates. Since my own children
have physical and intellectual impairment, I can fully
appreciate the importance of what I do. This is the reason
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that I choose this line of work.
I will tell you first about my daughter, Naomi
Ramos. She's now 19 years old. She was born premature at 24
weeks old. She's medically fragile. And this means that, due
to her physical disability, she's dependent on medical care
every day. She also has intellectual impair, and she require a
lot of care of around-the-clock supervision.
After she was born, the doctor told me that the best
place for my daughter is an institution. I really decided
against this because this was no life I wanted for my daughter.
I wanted her to have a normal life as possible, living at home
with parent who love her. I believe that people with
disabilities have the right to live at home with their
families. Along with the normal parenting skill, I had to
learn to take care of my daughter's very special needs.
Through the years her need has changed, but the severity of her
condition has not. I take cake her everywhere I go. It's not
easy. Like you say, they all over the place. But it's
important for me. I buy whatever she want. We travel to
different places. We take her to Puerto Rico to go see our
family. I want her so that she can have a life filled of same
opportunity of people here in this room. I want that for my
children.
Next I want to tell you about Justin. Justin now is
13. Anyway, he look like big. Remember he's only 13. When
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Justin was two, I realized something is different about him. I
don't see him acting like other kids around. So because I had
Naomi before, I don't know really what is a typical child. So
because he don't like act to other, I take him to the doctor,
and he's diagnosed with autism. Already coping with my
daughter suffering for severe intellectual disabilities and
also physical, his diagnosis is really heartbroken for me and
my husband. But I'm worried about the future of Justin because
he's on waiting list for the Autism Waiver, and this only ---
they give that waiver only when they're adults.
The reason I come here today is because I want
everybody here to understand how difficult is their --- this
day by day. But that is possible. For me and my husband it's
truly gratifying to have our children living with us at home.
We work together for the benefit of our daughter and son. And
I want to maintain this life for the both of them. However,
the reality is Naomi's now 19 years old. She's on the waiting
list for a long time, and soon she'll go to be 21. Instead of
being a time for celebration like a lot of people celebrate
when they turn 21, that is a really concern for me and my
husband because she's going to lose all the services she have
in this moment. My daughter has ten hours nursing every single
day because she has a tracheostomy, and Naomi requires 24/7
care. Without her services and extra support, either me or my
husband have to stay at home, taking care of them. However,
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without both of our incomes, it will be hard to maintain the
quality of life like our children deserve. Thank you for
listening to me and please think in all these families ---
please think in all these people that need services to live the
type of life they deserve. Thank you.
CHAIRMAN DIGIROLAMO: Thank you, Marisol. And
before we're done here with the panel, would you go get your
son and daughter and bring them back in ---
MS. RAMOS: Yes.
CHAIRMAN DIGIROLAMO: --- and introduce them so
everybody can say hello to them?
MS. RAMOS: Okay.
CHAIRMAN DIGIROLAMO: That would be terrific.
Martine, when you're ready.
MS. DELORENZO: My name is Martine DeLorenzo. I'm
the single parent of five boys. Three of my boys are still in
school and I am their sole source of support. I worked a
part-time job for ten years for the Disability Rights Network
and recently accepted an offer of full-time employment.
I'm here to talk about my family's experience
waiting for services. My son Anthony was born in 1994. He
developed seizures within hours and was placed on life support.
His doctors were hopeless that he would recover. I was
prepared for him to die and removed him from all the machines
that were keeping him alive. Only he didn't die. I was
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assured he was in a vegetative state and should be placed in an
institution. I was told he would never walk, never talk or
eat, was blind and deaf and wouldn't recognize me. Every day I
went to that hospital and insisted I was taking him home until
they finally stopped arguing and released him. Our lives were
then filled with years of therapy and hospitalizations, not
only to keep him alive and well, but to give him the same
opportunities as his brothers. I fought our local school
district over and over again to educate him in an inclusive
setting despite his profound disabilities in the very same
classrooms as his typically-developing peers. I appealed to a
Senator to force his insurance company to pay for an
out-of-state hospitalization for intensive feeding therapy, and
he did learn how to eat.
None of this cured him, but he made progress no one
ever expected. He's always been a curiosity for physicians who
are shocked when they come upon an MRI of his brain because it
still reads like that of a person in a vegetative state, and
clearly he's not. He has a great personality and a fantastic
sense of humor. When he was little, he laughed so much I was
convinced there was something else wrong with him, but his
neurologist assured me he was just a happy kid.
Anthony does have an intellectual disability, a
seizure disorder, a swallowing disorder. He needs a wheelchair
for long distances. He has trouble with depth perception. His
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speech is not understandable, which leads to behavior issues.
He has a co-occurring depression that requires medication.
He's not toilet trained. But because of his inclusion in that
typical classroom, Anthony taught himself to stand in
kindergarten by watching the other kids and, with therapy,
learned how to walk in first grade.
He no longer needs a feeding tube, but he eats a
pureed diet. He understands people speaking to him and uses a
combination of sign language, gestures, and a DynaVox to
express himself. He's come so very far, but he still needs
total care. When he was little, this was easier. We took
turns feeding him and carrying him and bathing him and changing
his diaper. As he grew, it became more and more difficult.
When he went through puberty, he developed the depression.
There wasn't an appropriate extended school year program for
him. He was headed for high school and our local school was
refusing him entry.
He was home from the time he graduated eighth grade
in June until January. I had to file for due process to get
our local school district to allow him his free and appropriate
public education in the least restrictive environment. Because
he had been home all day with nothing to do, his depression
became so severe that he wouldn't bathe or get out of bed. By
the time he attended school in January, I was now dragging him,
kicking and screaming, out of the house in the morning to the
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school bus. He was physically aggressive towards me and his
brothers. His behavior was interfering with my ability to
work, and I was the sole financial support of our family,
working several part-time jobs to keep a roof over our head.
We had to make terrible choices. If he wouldn't go to school,
his little brother would have to stay home from school so I
could work. After I broke down in his pediatrician's office,
the doctor arranged for staffing in our home paid for by his
Medicaid.
With someone to stay with him, Anthony didn't always
get to school, but his brother did, and I could work. After
finding good psychiatric care and behavioral supports in our
home, Anthony slowly recovered and found happiness in school
once again. He graduates this year from a vocational program,
where he learned to cook and bake.
Unfortunately, this education was not without
struggles, and again, I filed for due process. This time he
received a settlement which enabled him to obtain a
neuropsychiatric evaluation and evaluation and purchase of
appropriate communication systems and enough funding to spend
his summers with a job coaching agency instead of being babysat
in his extended school year.
His transition to adult services didn't begin until
he was 18. It's supposed to begin when you're 14. He still
has had no OVR assessment. No one from the school has
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approached me about what he'll be doing when he graduates. His
insurance company has been calling me for years, every six
months, reminding me to have his PUNS up to date and to apply
for services. I was told to be sure I was on the waiting list.
They even suggested that I apply for waivers for him, for which
I know he doesn't qualify, just so he would have something.
They reminded me with each of these phone calls that his
services would be ending when he turned 21 this --- March 29th
of this year.
Though, they didn't know it, but because I am an
advocate, I am well aware of the process to apply for waiver
and the bureaucracy surrounding it, not that my position made
it any easier. We have been in close contact with his supports
coordinator for years. His PUNS had him listed in the
emergency category, as it should. His supports coordinator
gave me a list of items he'd need for the application, and I
provided for --- I provided everything for which I'd been
asked. They submitted the paperwork to the administrative
entity, but there were no assurances. I contacted the Office
of Developmental Programs' regional office to ask about funding
for children transitioning to adulthood this year. I was told
there wasn't any funding put aside. The supports coordinator
sent the application to the administrative entity, who
responded that there was no funding. The supports coordinator
pressed further. The administrative entity suggested there may
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be funding for the PFDS waiver, that's the CAPS waiver.
Anthony has at least 53 hours a week of home
staffing, not including the time he is in school. He received
behavior support in our home. In June he will graduate, and I
expect him to contribute to society and work. For this he will
need staffing and transportation.
The PFDS Waiver doesn't even begin to cover his
needs. The supports coordinator told the administrative entity
that he needed Consolidated Waiver. As if his needs were not
clearly outlined in all the evaluations and reports, his IEP,
his ISP, his physical and more, the administrative entity again
offered the PFDS Waiver. The supports coordinator reminded the
AE that Anthony needed 24/7 care with feeding, bathing,
toileting, medication, behavior support and a job. The
supports coordinator reminded the administrative entity that I,
his mother, was not able to care for him due to my job and that
we have no natural supports available. His father is not a
part of his life. We have no family or neighbors on whom we
can rely. We have no time to develop these relationships
because every waking minute that I'm not working I am caring
for my son.
The administrative entity wrote back that the
supports coordinator should be focusing on Anthony's needs
rather than the needs of his mother. Apparently, I have an
irrational need to work along with an irrational expectation
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that my son have a life with as much independence as possible,
where he is a contributing member of society. I did not spend
Anthony's entire life advocating for an everyday life for him
only to watch him sit at home, losing all the skills for which
he's worked so hard. I cannot bear to think of him lying in
bed again, despondent and crying all day, in the grips of
depression.
Anthony knew his birthday was coming, and he was
beyond excited for months prior. The pleasure that he enjoyed
was in complete contrast to the agony that I was experiencing,
wondering how I would be able to work or, if I couldn't, how I
would feed my family or keep our home, wondering if he would
finish his school year or if he'd have to stay home alone.
The supports coordinator was relentless and
literally two days before his 21st birthday he received a
letter that state funding was available for the Consolidated
Waiver. Lest you think this is a happy ending, I assure you it
is not. The transition has been anything but seamless. He
lost his behavior support. There was no time to transition to
a new provider and no time for his old provider to get
qualified without the assurance of funding.
He's not here today because he was having a behavior
episode this morning with a staff person. He wouldn't get
ready for school.
He cannot use a job coaching agency until OVR does
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their own assessment. There is no longer time to arrange a
work/school schedule that will transition him to employment in
June. He risks sitting at home, regressing. His supports
intensity scale assessment was just --- we just did that
yesterday. It wasn't scheduled until later in April. The
administrative entity sent me a list of paperwork proving that
he was disabled, to be sent to them by April 26th. This list
includes each and every item that has already been provided to
them in the waiver application.
Due to his behavior with me, he requires a
residential setting. Finding an appropriate provider with an
opening is difficult and time consuming, and the search cannot
begin prior to his actual waiver approval, which is unlikely to
happen before May. Although he is entitled to institutional
care, Anthony has been cared for by his brothers and me his
entire life. We have saved the Commonwealth countless dollars.
It's shocking to think that after 21 years, the process for
transitioning to adulthood would be so fraught with red tape
and pointless hoop jumping and trauma. At least I am aware of
his rights and able to fight for him. It's heartbreaking to
imagine what other families are put through who may not have
access to the information that is afforded to me. Thank you.
CHAIRMAN DIGIROLAMO: Two very powerful stories.
Thank you for sharing. Marisol, can you bring your son and
daughter in and --- just so we get a chance to meet them and
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say hello? Good job, Matt. Good job. Hi. In a little bit.
Not right now. We'll just take --- suspend just for a minute
or two so we can see if we can meet Marisol's son and daughter.
OFF RECORD DISCUSSION
CHAIRMAN DIGIROLAMO: Okay. Hopefully maybe we'll
get them back a little bit later. So why don't we go on to our
next set of testifiers, and that is Pam Auer from the Center
for Independent Living of Central PA and Julie Skovera from
Abilities in Motion, AIM. If both of you could come up. And
before you get started, Marisol has found her family.
MR. RAMOS: Say hi. My name is Justin.
CHAIRMAN DIGIROLAMO: This young man was already at
the microphone.
MR. RAMOS: Hi, ---.
MRS. RAMOS: Say I'm Justin.
MR. RAMOS: I'm Justin Ramos.
MRS. RAMOS: And tell that is my sister, Naomi.
MR. RAMOS: And that is my sister, Naomi.
CHAIRMAN DIGIROLAMO: Okay. Welcome. And that's
your daughter, Marisol?
MRS. RAMOS: Yes. Naomi is 19 years old and she
looks like ten. And he's 13 and he looks like 19.
CHAIRMAN DIGIROLAMO: Welcome. And again --- okay,
Pam and Julie, you can begin whenever you're ready. And again,
welcome to the both of you.
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MS. AUER: Good morning. My name is Pam Auer. I
work for the Center for Independent Living of Central
Pennsylvania. I've been in the disability community for ---
I've been working in the disability community for 26 years,
since my college days. I am a person with a disability, and I
want to talk about a program that is very important to the
disability community, nursing home transition.
As the Center for Independent Living, we serve ten
counties with nursing home transition. That's under the Office
of Long-Term Living. The Department of Human Services' Office
of Long-Term Living nursing home transition program, it's
critically important to our community as a whole. Secretary
Dallas had mentioned in his Department of Human Service budget
briefing that a recent poll stated about 95 percent of
individuals stated they would rather live in the community than
go into a nursing home. And we've known that for a long time
as a disability community and appreciate that that information
is coming out.
Per the OLTL website, the nursing home transition
program was developed to assist and empower consumers who want
to move from a nursing home back to a home of their choice in
the community. And that's done through the Commonwealth's
nursing home transition program. It provides the opportunity
for individuals and their families or caregivers to be fully
informed on all long-term living options, including a full
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range of home and community-based services, and they receive
the guidance and support needed to make an informed choice
about their long-term living services.
In carrying out these programs, the Office of
Long-Term Living contracts with the Area Agency on Aging for
people who are over age 60 and community providers like the
Center for Independent Living for individuals who are under the
age of 60.
The primary goal is to allow an individual who's in
a nursing home the ability to decide do they want to stay there
or what is the housing choice they want. Can they move back
with their family? Are they able to --- do we need to help
find them housing and home and community-based services. As a
nursing home transition program, we identify barriers that the
individual may have and we help them work through those
barriers to get back out into the community. And to do this we
do it in a team approach. We try to. We work with the family
and the consumer uses their voice, what is it that they would
like. We work with the social workers and any other community
supports out there to make this transition happen. And it's
not an easy process and it's not a short process. Sometimes it
can be quick if the family --- the individual has a place to go
to, but sometimes it can take a long time.
One of the primary barriers to nursing home
transition is housing, affordable, accessible housing. In the
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central Pennsylvania area, at a minimum, it's --- it could be a
year --- it's, average, year-and-a-half wait for housing. In
some places like Philadelphia it's a lot longer to find
housing. We work with the individual to identify housing and
then connect the human services, the waiver services, that they
may need to live independently. I know, as the Center for
Independent Living, we have served --- we've served 250 people
in the program. Currently, in the last --- since 2007 we've
assisted 87 people to fully transition out into the community.
And each month we get referrals from the State through the FDIS
system. It's a data program that we connect, and we average 13
to 20 referrals a month with the ten counties that we serve.
There are people who definitely want out. They
desperately want out. And we need to improve the services in
order to assist more people to come out. We need more funds.
This is my plug for the Community First Choice Option. That
will bring more money into the state if we can get the
administration to go for it. It's federal funds. That would
help transition more people into the community.
The program is very cost effective. I hate, you
know, putting dollar signs on people, but we are --- well, and
there's some --- we need --- there's some --- how some people
have one understanding of how much we're able to spend per
person, and we are under the understanding that we are allowed
up to $4,000 to assist someone to move into the community.
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We do as much as we can for as little as we can
because we want to be able to get more and more people out.
But we don't want to try to skimp on anything, we --- a lot of
the people, if we have to find them housing, it's usually
because they're in a nursing home and all of their household
items, furniture, everything, could be sold, given away or
something, because the family thinks that that person is going
to stay there. So we need to help support them by helping them
find a house and the furnishings and things to live and succeed
in the community.
The reason I wanted to bring up the fact that there
is some differences. We value this program, we love this
program, and we think that the people who do the program are
great. But there's just some inconsistencies in the program
that we'd love to work with the Department on. Some --- I'm
sorry. I want to make sure I give you the information. It's
hard to work with the program with some of the inconsistencies.
But also, as the Center for Independent Living, we're a
non-profit and we have to up front all costs that we do. If an
individual needs the furnishings, we have to put it up and we
wait for a service coordinator who is working with the
individual to put it in the system. And it goes from one data
system to another in the state before we ever get paid for it.
So there is a long delay, which makes it difficult for us to be
able to serve the next person. So those are some of the little
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things that need to be worked out with the Department to make
it run better.
On our last transition, where we had to do home
modifications, we spent $30,000 and we had to wait months to be
able to be reimbursed for that. And those are some things that
are burdensome for a provider. Okay.
One thing that I wanted to mention regarding the
consumers who receive these services is that --- I talked about
using the waiver to get out into the community, be able to have
your personal care needs met, assistance in cleaning and those
kinds of things. With the waivers under OLTL, we have the
ability to consumer employ, which advocates fought for and
really value the ability to be able to hire, fire or manage
your own attendant. And it's difficult with nursing home
transition because of Public Partnership, LCC, for an
individual to come out of a nursing home and be able to hire
their own. There's a large delay. So that makes it difficult.
Sometimes that may delay a transition or the
individual has to go with an agency in the community that they
really may not want to. You know, some people want to be able
to --- if they're coming home --- be able to have their
attendant that they choose be able to help them with the most
personal care that --- the personal care, the bathing,
dressing. These are the most personal things happening in
their lives. They want somebody they can choose, but they
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don't always have that up front. But we need to work on Public
Partnership. That's still an issue for the home and
community-based services. They're still taking way too long to
do the paperwork to employ a consumer. So I just wanted to
bring that up. I thank you. I will be here for more
questions, and thank you for your time.
CHAIRMAN DIGIROLAMO: Thank you, Pam. I'd also like
to note --- good job --- Representative Rob Kauffman has joined
us also. Rob, welcome.
Julie, whenever you're ready you can ---.
MS. SKOVERA: Thank you. My name is Julie Skovera.
I work for Abilities in Motion as a waiver supervisor. We are
the entity --- one of the entities responsible for assisting
participants on these specific waivers, such as the Aging
Waiver, the OBRA Waiver, COMMCARE, Independence Waiver,
Attendant Care Waivers.
What we do is assist consumers who are already on
these programs in obtaining the services and supports necessary
so that they can remain in the community in the least
restrictive environment possible. My experience working as a
service coordination supervisor for waivers with the Office of
Long-Term Living has been positive for many years. I've seen
many success stories. They have been helpful. They are
professional, supportive, and have given us direction in many
different situations, good and bad. They have a very difficult
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job to do. When we have issues or concerns regarding health
and safety for consumers, the protocol is to alert the Office
of Long-Term Living ASAP and then they provide us with the
necessary direction to ensure the health and safety of our
participants on these waivers.
We have a wonderful working relationship with them.
Issues that need to be addressed as soon as possible are always
followed up on in a prompt, courteous fashion. From our
perspective as a service coordination entity, I feel they are
very competent, reliable, and have the consumer's best interest
at heart. Thank you.
CHAIRMAN DIGIROLAMO: Both of you, thank you very
much. And we might have some questions a little bit
afterwards. You can stick around.
MS. SKOVERA: Yep.
CHAIRMAN DIGIROLAMO: We appreciate your testimony.
Next up we have the Consumer Panel, Ann Marie Childress and
Diana Deeley. So if I could have you both come up. And I was
just pleasantly surprised by the arrival of Liz Yarnell, who
was --- and Liz, stand up. Welcome. And she was on staff for
Human Services Committee for a full number of years and just
retired. Good to have you back, Liz. Ann Marie and Deanna
(sic), you can begin whenever you may.
MS. DEELEY: My name is Diana Deeley, and I am here
to talk to you about my experience with having an OBRA Waiver.
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I have sent in a copy of my speech, so I'm going to make it
shortened. But I recently was lucky enough to move from my
home in Susquehanna Township into an apartment in Camp Hill,
which happens to be located right next to the Center for
Independent Living.
I have been an advocate with the Center for
Independent Living since --- for ten years, and I've had an
OBRA Waiver for that many years. I particularly want to bring
up a Senate bill --- or House Bill 447, sponsored by Senator
Bizzarro (sic) from Erie. This will allow aides who are
currently working with agencies to be trained by Registered
Nurses to administer medication. The bill that I'm asking that
everyone take a look at is a bill for nurse delegation, because
right now in the agency model, I am technically not allowed to
be given medication. And with me moving out in my own
apartment, my parents are not there to help me administer the
medication. And I am completely capable of telling my aides
what I need, when I need it and everything that they need to
do. I just need the Nurse Practices Act changed to allow my
aides to be trained --- to allow my aides the rights for
certification to be trained to be giving my meds.
I now currently do a split waiver services model.
Part is through agency and the other part is through PPL.
Right now I'm still waiting for an aide to be hired through
PPL. It's taking way too long. Because I live on my own, I
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had to go to an agency model. The agency is the Center for
Independent Living, who, up until four --- I guess it --- up
until the beginning of 2013 and the former Governor Tom Corbett
decided to give the --- all the rights to PPL to manage, my
entire waiver was given to the --- my waiver services were
given to the Center for Independent Living in order to do
financial management for me. And the Center also does lots of
gym --- we have an accessible gym, so everything was running a
lot smoother. Thank you very much. I will be in the back for
questions later. Again, the House Bill is 473, and it was
Senator Bizzarro from Erie. Please take a look at it and
approve it. It's very much needed. Thank you very much.
CHAIRMAN DIGIROLAMO: Very good, Diana. Thank you
very much. Ann Marie?
MS. CHILDRESS: I'm really honored to be here. It's
the first time that I've been able to testify. I am on the
COMMCARE Waiver. That is for people with brain injury who
would otherwise not be able to live in the community.
I have suffered multiple traumatic brain injuries.
I've, in fact, had --- felt my brain move within my skull. I
suffer from long and short-term memory, extreme fatigue, focus,
concentration, balance issues, loud noises just send me,
problems with gait, and I also have an immune --- an autoimmune
disease.
I am grateful for the COMMCARE Waiver for the things
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that it affords me, to live in my home with my husband. I have
a personal emergency response system. I was doing community
integration when I was first on the waiver. And I have a
cognitive therapist, who I continue to see.
When I was placed on the COMMCARE Waiver, I was
placed on Medicare/Medicaid. My Medicaid is Access. There are
very few physicians who will take that. There are doctors who
will take Medicare, they will take Medicaid, not too much the
Access card, but this is both together. There are very, very
few physicians. I cannot even find a neurologist who will take
my insurance.
I am very grateful because my prescriptions are paid
for. When I was on Medicare alone, my husband and I went into
very deep debt because of the doughnut hole that has since been
changed, I believe. So before I was on Medicare/Medicaid ---
and remember, it's not like other Medicaids, it's the Access
card --- I was able to see any doctor.
When you go onto COMMCARE, they give you a list of
physicians about this long who are supposed to take your
insurance. I have called numerous --- many, many of them, and
they will not take my health insurance. I can go into any
hospital I want. However, the problem is, once I'm released,
that doctor is not going to see me again. I was being treated
by a --- I've gone to like Bryn Mawr, Moss, and I ended up at
the University --- Hospital of the University of Pennsylvania
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to see a neurologist there. I liked him and he knew his stuff.
After I saw him three times, I got a bill for hundreds and
hundreds of dollars. And I'm like, well, no, I asked them
before I went do you take this insurance. Yes, we do. I
called them and said, what is this that I received. And
fortunately, I can really still speak for myself. And I was
told that he does not take the Medicaid that I have, which is
Access, and either I pay the bill of hundreds of dollars or he
would not see me again. I've never seen him since. And that
is a very big deal.
My mouth --- the inside of my mouth looks like a
checkerboard because I can't afford to go to a dentist. I only
get new glasses if my glasses break. I cannot afford to go to
an eye doctor and purchase new glasses. That is something that
I would really like to see covered, you know, dental and
glasses.
Speaking of medical care, I have obstructive sleep
apnea. I am required to use a CPAP machine, Continuous
Positive Air Pressure. My machine broke in early February, and
I went back and forth with the --- well, my husband contacted
the manufacturer. I contacted my doctor's office and the
provider of the CPAP machine. And I was told, at best, we
could get a refurbished one with no guarantee for $438. I'm on
Social Security Disability. I don't have that kind of money.
So then I contacted my supports coordinator and told her what
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happened. She said that that is not something that they
usually --- it's not a machine that they usually work with on
the COMMCARE Waiver. I said, but this is for my health and it
is a medical machine. Well, okay, I'll talk to my supervisor
about it. Well, didn't hear anything. Didn't hear anything.
Wrote back again. I haven't seen my supervisor yet, but I will
meet with her on Thursday. I write back again, because I am
tenacious of nothing else, and said what is going on. And she
said, well, we have to get special permission to use COMMCARE
money to replace your CPAP machine. That was the end of
February.
Well, then I got news that they were --- that they
thought they might be able to get it, but they reapplied to
Medicare, which makes no sense. This has nothing to do with
Medicare now. Medicare only pays for a new CPAP machine every
five years. You're out of luck, unless you can afford to buy a
new one, if anything happens to it. So she reapplied to
Medicare and, of course, I wrote back. We're at square one.
Since then I have heard absolutely nothing,
absolutely nothing, and I am angry. These things are put in
place for our use. I could never live on my own. I could
never live on my own, you know. And I think what happens if my
husband should become incapacitated or pass, what am I going to
do? I'm already fighting for this. So I've been without a
CPAP since mid-February. Still don't have one.
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Anyhow, one of the things that I'm asking for is
that the procedures of the --- and the Department of Human
Services makes sure I get what I need under COMMCARE. And if
I'm not getting them, I know a whole lot of other people are
not as well.
I'm also asking for more money. We always need
money, especially when our health is at risk. I do worry about
what my future is going to be. Right now I can still speak for
myself and I can put up a fairly good fight. The problem is
that when I get older and cannot pound on doors and, you know,
bother people because I need this or that --- and we know,
anybody who's on one of the waivers knows that you ask for it,
who knows when you're going to hear from them again, unless you
bug them.
So anyhow, one of the other things that I'm really
very concerned about is my future. My next transition, and I
guess it's starting now, is I'm entering the transition into
old age. The COMMCARE Waiver says that I will not have to go
into a nursing home. I don't think any of us want to have to
end up in a nursing home. But will there be the money there
for them to come to my home and give me the services that I
need and deserve? I have no idea. It's a very, very big deal.
And I don't ask for frivolous things. Like this thing with the
CPAP machine, that's not frivolous, that's my health, and yet I
can't get it. It makes no sense to me. I am fortunate that I
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have a great husband, and my kids help us out, too. But what
happens when they're not around? I am just very, very
passionate that what we are told that we will get is what we
will get. I don't want to see it on paper. That means nothing
to me. So please, please appropriate more monies towards
COMMCARE. Watch what the Human Service Department is doing
with that money. Watch what the providers are doing with that
money. Are they following the procedures? I can't even
express that enough. But I thank you for your time. I didn't
get as boisterous as I thought I might, but --- I was a teacher
in my former life. But thank you. I'm really honored to be
here, and thank you for listening.
CHAIRMAN DIGIROLAMO: Thank you. Thank you both for
the testimony. Our next panel is Jeff Iseman from the State
Independent Living Council. And I see Jeff an awful lot up
here in Harrisburg. And also Matt Seeley from the Pennsylvania
Living Council and a board member, also. Is Matt here? Okay.
Welcome, Jeff.
MR. ISEMAN: Thank you.
CHAIRMAN DIGIROLAMO: Always good to see you.
MR. ISEMAN: Okay.
CHAIRMAN DIGIROLAMO: And you can begin whenever
you'd like.
MR. ISEMAN: Thank you. My name is Jeff Iseman.
I'm the program analyst for the Pennsylvania Statewide
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Independent Living Council, also known as PA SILC.
Pennsylvania SILC's mission is to use our collective power and
legal mandate to develop and secure public policies and ensure
civil rights and expand options for all persons with
disabilities in basically every aspect of life. Some of you
are familiar with SILC and CILs and we're cross disability,
basically meaning that CILs and SILC help folks with all
disabilities, mental health, intellectual disabilities,
physical disabilities.
SILCs and Centers for Independent Living, or CILs,
are authorized for federal states in six U.S. territories under
the Federal Rehab Act of 1973. Both SILC and CILs are also
noted in Pennsylvania's Act 139 of 1994 as voices for
independent living in Pennsylvania. Basically SILC is funded
primarily through the Federal Department of Education, Rehab
Services Administration, or RSA, which is soon to change to
HHS, or Health and Human Services under the Workforce
Innovation and Opportunity Act passed last year by Congress.
We also get funding through OVR. It's about 90 percent
federal, 10 percent state, generally.
We work with the 18 Centers for Independent Living,
or CILs, with other disability organizations, including a few
you've heard from in the room here, Arc chapters, disability
rights networks, mental health organizations and other OLTL
providers, basically to address independent living issues for
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people with disabilities and seniors, basically all ---
basically all ages, all aspects of life. On a national level
we collaborate with the National Council of Independent Living,
or NCIL, N-C-I-L.
Every three years --- and you can find this on our
website or we can email it to you --- we do what's called a
State Plan for Independent Living, or SPIL. And each three
years the issues change, some of the focus. Some of the issues
we've covered in the past and folks have testified in this
room, issues related to long-term care, preferably home and
community-based services, healthcare, accessible housing,
employment, transportation, education, employment, emergency
preparedness and voting issues for folks with disabilities.
Pennsylvania has 18 CILs. Every CIL has four core
services. The first core service is basically information
referral, or I&R. Basically an individual or their family
contacts a CIL and gets information on disability programs.
The second core service is advocacy. This can be
either individual or a systemic advocacy. An example of an
individual advocacy issue may be somebody working with a
landlord to basically get a portable ramp for somebody. As Pam
mentioned, nursing home transition, so they can live in an
apartment. Another example might be some landlords tend to be
a little hesitant to rent to folks with disabilities, so you
may need to say, hey, this is somebody that will be a steady
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payer, particularly if they're getting like a Section 8
voucher. We also tend to remind folks like you need to comply
with things like the Fair Housing Act and things like that.
That's an example of an individual issue.
A systemic issue that some of the CILs and others
have worked with is, on a county-based level, accessible
polling places, which a number of CILs have addressed
successfully in their individual counties. We still have over
1,600 of them across Pennsylvania.
The third service is peer support. Basically it's
matching someone else with the same or similar disability to
yours. Example, somebody who's lived in a nursing home, when
you get somebody who works for the CIL who successfully
transitioned out of a nursing home themselves, somebody perhaps
who's a quadriplegic, acquired their disability through a
driving accident. Let's say you get somebody with a similar
disability. They're going to relate to that person more than
they would to somebody who didn't have that disability.
And the fourth CIL core service is independent
living skills. Basically folks who acquire a disability often
need to relearn life skills, maybe need to learn to use
transportation again or drive. Maybe it could be just walking
again, maybe maneuvering living space or maybe your kitchen.
Maybe you need to adjust the countertops higher or lower,
things like that.
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In the near future CILs will be required to do an
additional fifth core service that has three components under
the Workforce Innovation and Opportunity Act. We're still
waiting for the regulations, which should be out later this
year or next year. The three points there are basically
nursing home or institutional transition, basically
transitioning folks out of nursing homes or other stay
institutions, like a state center or state hospital. Diversion
from institution --- nursing homes or institutional care,
basically finding an option up front. Instead of the person
going in and having to get them out, you divert them up front,
which saves quite a bit of money, usually about one-and-a-half
to two or three times over an institutional setting.
And the third one is an issue that your members are
dealing a lot with right now. It's the transition to adult
life for students with disabilities. Basically this would be
students that are age 18 or post high school and moving
students toward competitive employment, which is also a
component of the Workforce Innovation and Opportunity Act.
At this --- one other thing I would mention is ---
well, I'll turn it over to Matt now and he can fill you in.
MR. SEELEY: Good morning, everybody. My name is
Matthew Seeley. I'm a board member of the Statewide
Independent Living Council. That's the group that Jeff works
for. I'm also a board member of the Rehab Council that advises
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the Governor and OVR on rehabilitation for people with
disabilities.
In 1996, I was in a car accident that left me as a
quadriplegic, basically what Jeff just described. I'm
paralyzed from the chest down. I have paralysis of my arms as
well. I can't write. I could write, but it would like a
one-year-old would have wrote it, so don't ask me to write any
birthday cards or anything like that.
I acquired my disability in 1996. And
unfortunately, unlike some of the other people here that
testified, I chose not to --- had a choice. I chose not to
have my family take care of me. It's not that I don't like my
family, don't take it that way, but I chose to go into a
nursing home. I spent five years in a nursing home. And the
woman that spoke just a minute ago on the COMMCARE Waiver, her
fears of going into a nursing home, I hope everyone here has
those fears. It was not fun. Five years was a long time to
live there. I was 21 at the time and I lived with people that
were --- I won't list ages because there's nothing wrong with
ages, but for a 21-year-old it was quite an environment.
But anyway, some of the programs that the people
talked about today, nursing home transition, Centers for
Independent Living, those were the reasons that got me out. I
started going to college when I was in the nursing home. I
actually took the nursing home bus to my community college. I
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was the only --- I was actually the only person at my college
in a wheelchair, and I came there on my big nursing home bus.
After I --- when I got my Associate's degree, I got
out of the nursing home, moved into my own apartment, kept
going to school, got my Bachelor's degree in political science.
And at that point I had Jeff's job. When I graduated college,
I was in Allentown. I moved out here to Harrisburg. I had
Jeff's job before him. And I left that job to go to law
school. I'm actually a lawyer now. Yay me. And it's a lot of
the programs that people talked about today are the reasons
that I'm no longer in a nursing home.
Act 150, which I'm sure you guys are well aware of,
I pay the fee --- the monthly fee, to get attendants in my
home. I have both an agency model attendants, as well as
consumer-employed attendants, that come into my home. I hire,
I fire them. I'm doing a lot of firing. I wish I was doing
more hiring, which unfortunately leads me more to an agency
model than a consumer employee model.
But back to my --- I really didn't want to read
this. I hate being read to, so I'm sure you guys feel the
same. But I did receive services from United Cerebral Palsy
here in Harrisburg. They do my service coordination. I
actually --- unfortunately, I never really received services
from the Center for Independent Living to get out of the
nursing home. Right now I spent a lot of time in the Center
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for Independent Living across the river in Camp Hill. They
have an accessible gym there, which is invaluable. And if you
know people with disabilities, I would encourage them very much
to go to the gym over there. It's very good in terms of
socialization as well as --- even though I'm a quadriplegic and
I can only move things above my chest, I've been able to get a
lot more independence and a lot more physically fit from the
gym over there.
I did receive attendant services from the Center for
Independent Living in Philadelphia, Liberty Resources, years
ago. They were the first group that gave me --- or provided
the attendants for me.
Let me go back. When I had Jeff's job, I was the
public policy analyst for the PA SILC. From 2007 to --- I've
lost my track.
Let me move on to --- the other main agency that got
me out of the nursing home was OVR. I mentioned them a couple
minutes ago. The Office of Vocational Rehabilitation had a
counselor there that was --- I would be living in the nursing
home today if it was not for him. His name was Ed Dun --- is.
I assume he's still around. He came to visit me in the nursing
home more than weekly to push me out of there. I was severely
disabled, like I mentioned, and I did not think I could live on
my own. And because of him and because of other --- the other
services Jeff talked about, peer counseling and things that
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CILs generally provide, people in the community that had
similar disabilities to me came to the nursing home and
basically showed me that I could do it on my own. And even
though I did not technically got those services from Centers
for Independent Living, Centers for Independent Living do
provide those and do help people like me. So I'm sure there's
not a lot of --- maybe, I don't want to say I'm sure, maybe
there's not another lawyer in a nursing home, but people in
nursing homes --- or people with disabilities don't need to
live in nursing homes. And I guess that's kind of my story,
and I hope that I've shown that to you. I'll hand it back over
to Jeff now.
MR. ISEMAN: Okay. Thanks, Matt. A couple final
points. Half of our 18 centers in Pennsylvania receive state
funding through Pennsylvania Labor and Industry or OVR. Matt
mentioned OVR, and they're a very key part of keeping people
with disabilities employed and just staying in the community
instead of a more costly nursing home or institutional care.
Basically the home and community-based services, as was
mentioned by Kevin Hancock, basically they're funded through
the Department of Human Services' OLTL. And for folks that are
over 60, you have, as part of Aging, the Options Program. And
we mentioned earlier OBRA, COMMCARE, Independence, Attendant
Care Waiver, Act 150. Those are all key to keeping folks in
the community, which it's usually about one-and-a-half to two
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or three times less costly, even if you add in other supports.
And there are a lot of other state-funded programs, too, that
help people with disabilities and seniors.
And just to mention a little more about the CILs,
every CIL is a little different. I would encourage your
members to visit a Center for Independent Living. We have some
CILs, they do the four core --- all them do the four core
services, but we have some, like CILCP and Abilities in Motion
and Liberty Resources and Voices for Independence that they
work with students on their ISPs, Individual Services ---
Supports Plan; IEPs, Individual Education Plan. You have CILs
that are direct service providers. You have CILs that do
supports coordination. And they're all important parts of the
piece for folks to remain in the community. So I thank you for
your time. And if you have any questions, we can either answer
them now or we'll stick around until the end of the hearing.
Thank you.
CHAIRMAN DIGIROLAMO: Yeah, thanks, Jeff.
MR. SEELEY: Thank you.
CHAIRMAN DIGIROLAMO: And Matt. Thanks to both of
you. Our final testifier of the morning and certainly last but
not least is Chava Kintisch, who is the Director of Civic and
Governmental Affairs for the Disability Rights Network. Chava,
welcome. And you ---
MS. KINTISCH: Thank you.
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CHAIRMAN DIGIROLAMO: --- can begin.
MR. KINTISCH: Thank you. And thank you, Chairman
DiGirolamo. And thank you, members of the Committee. We
appreciate so much this opportunity to testify before you this
morning. My name is Chava Kintisch, the Director of Civic and
Government Affairs for the Disability Rights Network of
Pennsylvania, or DRN.
The Disability Rights Network is the statewide
protection and advocacy system for people with disabilities in
Pennsylvania. We provide free legal and advocacy services for
children, youth and adults with disabilities across the state,
people who --- of any age and people with any kind of
disability. We help people to access home and community-based
services, transportation, housing, education. We help remedy
discrimination. And we help provide relief from abuse and
neglect in institutions and in the community.
The Disability Rights Network receives thousands of
requests for help each year across Pennsylvania, in every
district, in every one of your districts, and we seek to
provide as much help as we can to every person who contacts us.
We have three offices. Our main office is here in
Harrisburg. And also we have an office in Philadelphia and in
Pittsburgh. We have community advocates also, such as Martine
DeLorenzo, who also works with people with intellectual
disabilities and autism in the community.
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As Representative DiGirolamo said this morning, you
have heard powerful stories from the witnesses. You've heard
compelling stories from family members and from people with
disabilities of all ages and all life experiences. And the
agencies as well have told you about the services that they
offer that are so important for community living, and we thank
you for being here this morning, also.
You've heard real-life experiences also of people
waiting for services, the fears of family members who aren't
sure what's going to happen, if their child or loved one is
going to get the services they need. And I want to emphasize
that you will hear the same stories of your constituents.
Every one of the districts across Pennsylvania has thousands of
people with disabilities with the same stories, with similar
stories, with different stories about our need and our want and
our desire to live in the community. There are about 1.8
million Pennsylvanians with disabilities.
I wanted to talk a little bit about the picture of
Pennsylvania as it is currently. First, in terms of the
institutionalization of adults, you've heard the witnesses
testify this morning that there is a great desire for people
with disabilities to live in the community. Currently, in
Pennsylvania there are about 964 individuals in five state
centers which are public intermediate care facilities in
Pennsylvania. There are currently about 4,253 persons under
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age 60 in nursing facilities who are on --- who are Medicaid
recipients, according to the Office of Long-Term Living. I
just wanted to add about state hospitals, which is a different
service system, but there are about 1,500 individuals in seven
state hospitals across Pennsylvania.
You've heard this morning about the need for
community services and the emphasis on rebalancing the system
to support community living. According to the Office of
Long-Term Living, in a recently quarterly report only 49
nursing home transitions were taking place and only 62
transitions to the community under money follows the person.
Because there are about 95 percent of people want to be living
and working in the community, we would like to see more
transitions take place and more supports for community living.
More people can be served in the community with the same amount
of funding. And it is the desire of people with disabilities
to live in the community and to work in the community like
everybody else.
Also, there is a great desire and need for services.
You heard about a family member whose daughter is on the
waiting list. Currently, as of January, there are 14,021
individuals on the waiting list for intellectual disability
home and community-based waivers. That includes 4,595 in the
emergency needs category, meaning that they need services
immediately, within six months.
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There are just over 1,400 individuals on the Autism
Waiver waiting list, but we know that there are about 55,000
individuals who are in some sort of system across Pennsylvania.
And according to a recent autism census by the Bureau of Autism
Services, there could be as many as 133,000 more individuals
not in any system, not identified in Pennsylvania, who have
autism. The report also said that adults with autism are going
to be the greatest growing population. There is a great need
also for autism community-based services. And as the
Department testified this morning, the Autism Waiver only has
about capacity for 518 persons, though.
The Office of Long-Term Living serves about 24,800
adults with physical and developmental disabilities, including
brain injury. That's according to a recent quarterly report.
We have been told at the Disability Rights Network that there
is a great need for more screening of children, youth and
adults for brain injury, a greater need for screening so that
they can be identified and receive the services they need to
recover from their brain injury in the community.
It's budget season. You've heard some requests and
some --- requests about budget needs. And I wanted to mention
that also the Disability Rights Network does support a budget
that provides for full funding for community living for people
with disabilities. You heard this morning how important
funding is. It's the difference between no services or the
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wrong services or the --- or services in the community that
will provide full health, full habilitation, full
rehabilitation, full community living for people with
disabilities.
Thank you so much for your time and your
consideration. I'm happy to answer any questions. Thank you.
CHAIRMAN DIGIROLAMO: Chava, could you sit? I mean,
we're going to open it up for questions, and I had a --- my
question, I think, was for you. And you know, thank you for
your testimony. And you know, realizing that there is not an
unlimited amount of money to go into all the different
programs, from your perspective, what is the one thing that you
would want to tell this committee and tell the people in state
government would be the one thing that we could do that would
help out the people that you serve the most?
MS. KINTISCH: That's a very good question. I'd
almost want to take a poll of the disability community here at
the hearing because there are so many needs. I think what we
--- what we know from people who contact us, that funding for
home and community-based waivers are so important. You've
heard testimony about the different waivers across
Pennsylvania, individuals who are receiving those services and
waiting for services. Home and community-based services can be
a difference between a lifetime of institutionalization and the
ability to live in the community and participate and work and
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go to school like everybody else.
CHAIRMAN DIGIROLAMO: Okay. Okay. Chava, thank
you. Now I want to open it up for questions. Representative
Murt, you had your hand up first.
REPRESENTATIVE MURT: Thank you, Mr. Chairman.
Steve, can I ask you a couple questions if you don't mind?
First of all, Steve, thank you for your service to this mission
for many, many years. You've done a great job. Long before
you ever came into state government you were a great
advocate, ---
MR. SUROVIEC: Thanks.
REPRESENTATIVE MURT: --- devoted. Thank you.
MR. SUROVIEC: Appreciate that.
REPRESENTATIVE MURT: Your testimony was excellent,
Steve. And the one aspect I thought was really good was when
you talked about the process of registering for intellectual
disability services. It's the first time in eight years that
I've been in Harrisburg that anyone's ever walked through that
process as cogently as you did.
The two questions are this. The supports
coordinator, who does the supports coordinator work for, the
county, the state, the agency?
MR. SUROVIEC: The supports coordinator --- and it
depends. A lot of the answers in our system, it always
depends. Historically, they've worked for the county. Several
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years ago there was a change in the system that required that
an individual would have a choice of a supports coordinator.
So some counties have supports coordination within their
organization, and there also have been other organizations that
have sort of cropped up providing support coordination. So
it's not a state function, but it's a function that the state
would pay for. But it tends to be either a non-profit or it
tends to be part of a county.
REPRESENTATIVE MURT: Okay. Second question is we
haven't discussed it today, but I'm curious whether or not the
rural parts of Pennsylvania are underserved relative to
programs and services to adults with disabilities.
MR. SUROVIEC: I think --- I think the rural areas
probably have a commensurate amount of resources depending on
their population. So to the extent that there are challenges
within urban areas, there's probably challenges within rural
areas as well, and perhaps different challenges. So, for
example, transportation always seems to be a greater challenge
within rural areas, both in terms of just people being able to
access their community, access a job. But if you were to line
up where resources go, it probably would be commensurate with
the population.
REPRESENTATIVE MURT: I know down in the southeast
we have our challenges, but I can only imagine how difficult it
is in some of the more remote parts of Pennsylvania. So thank
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you, Mr. Chairman.
CHAIRMAN DIGIROLAMO: Representative Waters?
REPRESENTATIVE WATERS: Thank you, Mr. Chairman. I
have --- I would like to ask Ms. Chava, Esquire, a question
about --- a question. You had mentioned --- that number again
that you mentioned about the amount of disabled Pennsylvanians
was --- what was that again?
MS. KINTISCH: About 1.8 million.
REPRESENTATIVE WATERS: 1.8. And obviously, that
means there's a lot of people who needs the services that
aren't getting the services right now. And you also have
mentioned that --- about the desire now to have more
community-based facilities for people with disabilities. I
think it was yesterday there was a report about --- it was a
disabled man who was one of the people that realized their
rights of the disabled. He was talking about how sometimes
people are in a hurry and they maybe run in front of people in
wheelchairs or they touch --- sometimes they want to over help
and they might help, and he was talking how sensitive the
devices are on the wheelchair so that --- and their ability to
maneuver.
If we do have more people living in the communities,
how --- what plan do you have or do you think there needs to be
more information provided to the communities where the disabled
will be so that they will know how to respect the rights and
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the independence of people who are disabled? I mean, do you
think that that would also need to be a part of when the
program --- hopefully the funding becomes more available to
help provide more community-based services for the disabled and
for them to have independent living? Do you think that the
community needs also to be better informed about their rights
or the fact that they are here and how could we help --- make
sure that their life is more comfortable --- as comfortable as
possible.
MS. KINTISCH: Yes, I do, Representative. There is
a need for awareness, education and training about disability
etiquette. It's a cultural shift that we've been working on
for the --- for many, many decades that people with
disabilities be in the community, be a part of the community,
and there does need to be awareness and education. I know that
the Centers for Independent Living do a lot of training and
awareness on disability etiquette and awareness. We also do a
lot of training and help people with disability discrimination
cases.
So the Americans with Disabilities Act requires
integration. The Individuals with Disabilities Education Act
requires inclusion in classrooms. So I think you have the law
and definitely you have societal education and attitudes being
changed at the same time. I think the Centers for Independent
Living and other community-based organizations would be a good
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resource to work with on that piece of it.
MS. SALANDRA: I just think the best way to do it is
to have someone in the community, so the nursing homes and
institutions, and they become your neighbors and ---.
REPRESENTATIVE WATERS: Can you identify yourself?
Can you come to the mic? Mr. Chairman, is that okay?
CHAIRMAN DIGIROLAMO: Absolutely.
MS. SALANDRA: I'm Nancy Salandra with Liberty
Resources in Philadelphia. We're a Center for Independent
Living. But the best way to change everything is to have
disabled people in the community. We do nursing home
transition. We have people living in the community. But you
know, a center's a good place, but you need to be out in
society.
So we change it by being out there, by having a job,
by having an apartment, by going to work on the bus, by being a
neighbor, by being somebody's husband, wife, having children.
So the more we're out in the community, the better off. The
startling is so many people are in nursing homes and they don't
realize this is it. We show up one day and we're like, do you
want to get out and they're like, what, and you know, upset and
crying that they realize they can get out.
So the way to change it is we need to change the
nursing home industry, start closing the beds and start having
people out here, and that will change everything.
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REPRESENTATIVE WATERS: Thanks. Thank you. Thank
you for --- for --- I'm sure that there's a lot of great
comments that we have in the audience, and you represent that.
Thank you for standing up and --- standing up for this issue.
Appreciate you so much.
Mr. Chairman, there was one other lady who had spoke
earlier, and I don't know --- oh, she had mentioned something
about she didn't want to mention costs, being cost effective,
because she don't want to put --- you know, put money on human
beings, but we live in a society where that is what we need in
order for us to provide services.
And so I just wanted to say to her, you don't have
to apologize. We do need more money and more Pennsylvanians
need to know about this issue. I'm glad this is being
televised because when we talk about what services are being
provided in Pennsylvania, there's --- there are a lot of good
services being provided. But they could do so much more with
those services if we did have additional funding and additional
resources so that it could be provided so all Pennsylvanians
could have a great quality of life. I just wanted to say that
to her.
CHAIRMAN DIGIROLAMO: Thank you.
REPRESENTATIVE WATERS: Thank you, Mr. Chairman.
CHAIRMAN DIGIROLAMO: Thank you, Ron.
Representative Ward?
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REPRESENTATIVE WARD: My question is for Steve. And
while he comes to the microphone, I would just like to thank
everybody here for your attendance and your wonderful
testimony. It has been extremely informative. So thank you
very, very much.
Steve, you had mentioned the Adult Community Autism
Program that is available in four counties. I'm going to ask
you a question. And I think I know the answer, but I'm going
to ask anyway. Why is that not available in other counties?
MR. SUROVIEC: Good question. So it's --- it was a
program that was started a few years ago. And I think it
started as a pilot project, a demonstration project. And it
was the first time that a program like this in Pennsylvania was
created where essentially it was a managed care model. So you
have a lot of integrated services being brought to the
individual from multiple funding streams.
And I think when it was created, they wanted to
pilot it and make sure it was working well. And I think the
Bureau of Autism Services has been learning a lot about how
it's been operationalized and administered, and they continue
to learn. Honestly, it's --- I think it's a good model and I
think we're --- what we're doing right now is taking a look at
whether or not it's something we can explore and expand
statewide or at least into other regions in the state.
REPRESENTATIVE WARD: Thank you.
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CHAIRMAN DIGIROLAMO: Okay. Any other member?
Representative Brownlee?
REPRESENTATIVE BROWNLEE: Yes. Thank you, Mr.
Chairman. I don't know who this question is for, but maybe
somebody can answer this. What I've been hearing for most of
the hearing is that what is optimal is for people with
disabilities to be able to realize some normalcy in their
lives. And we, as a state, should be moving towards that. The
other thing I've been hearing is the first step is affordable
housing for people with disabilities.
So what my question is, if anybody can answer, is
how do we move towards that? How do we move as a legislature
towards helping the disability community with affordable
housing, number one? And once there is affordable housing, how
do you get the disability network of people into that housing
to be in the community? Has there been --- I do know that
there is some. In Philadelphia, where I'm from, certain
places, they do have disability --- housing for disability, but
there's also some obstacles after that. Can someone in here
tell me what those obstacles are?
MS. DEELEY: Thank you. My name is Diana Deeley. I
was the one that spoke as part of --- in conjunction with Ann's
group. I can speak to the second part. I can't speak to the
first part. I'm sorry. I can speak to your second part. And
what I think needs to happen is the Nurse Practices Act and the
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bill that I mentioned really needs to be taken a look at
because what that will provide is for attendants to be trained
to do medical --- medical things, which will keep costs down.
And then we could use the excess costs or the saved costs and
put it into other things like nursing home care transition and
we can move the money around.
REPRESENTATIVE BROWNLEE: Thank you.
CHAIRMAN DIGIROLAMO: Jeff, go ahead if you want
to ---.
MR. ISEMAN: Okay. I can comment a little bit on
the housing piece. For folks with physical disabilities,
particularly accessible housing, and some of the waivers have
what's called assistive technology or home modifications as
part of the waivers, but some don't. Example, the Attendant
Care Waiver, you don't have assistive technology or home
modifications as part of that waiver or the AIDS Waiver or the
Act 150 program. And some folks are on waiting lists with
their counties, some folks that may or may not need waiver
services. If folks can get a home modification --- and the
cost varies. If you're in a lower cost area, maybe it's ---
I'm going to say $5,000 or $10,000. If you're in a more
expensive area, like suburban Philadelphia, you might be
spending $20,000, $30,000, a little more.
I think one of the things that's in the Governor's
budget is to address some of those housing needs. If you look
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in --- example, DCED, there's a line item called Keystone
Communities. And one of the programs that's in there is the
Pennsylvania Accessible Housing Program. And folks may not see
just looking at that line item you have to drill down and ask
DCED about it, but they generally use about 15 to 20 percent of
the money in there. And the Governor put an increase from ---
it was under $5 million. It's up to $21 million. So about a
third --- about a fifth of those funds will be used.
There's also some money in the PHFA budget from the
first time for mixed-use developments, which also include
special needs. The folks can get accessible units. That's a
big deal. Not everybody with a disability needs that, but
folks with mobility issues, which I would also include frail
elderly, need that.
In terms of how that works out, very briefly, is
lobbyists working with your local housing authorities, your
community development agencies, community action agencies,
whoever has the home modifications contracts. Some of the
counties have waiting lists for these programs, and some
counties say they don't have the staff to really keep track of
the home modifications, but affordable, accessible grade
housing is a model that a lot of us have worked on for a number
of years. I also want to give a quick shout-out to Lehigh
Valley Center for Independent Living, who's here. Thank you.
MS. TUCKER: Hello. Shawn Tucker, Liberty Resources
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of Philadelphia. And you said you're from Philadelphia?
REPRESENTATIVE BROWNLEE: Yes.
MS. TUCKER: Because we need a lot more accessible
integrative housing. And the first thing we need is to have
disabled people at the table when they're building the houses
because they're not accessible because an apple is not a pie
until you make it. You can't make it if you don't know how to
make an apple pie, because not all of us like cinnamon and
nutmeg. So that's what we need.
And we need people to stop looking at us when we
appear like they've never seen us before and surprised that we
all came out together in droves, and you don't have disabled
people in your family because we wasn't all born like this.
You have a stroke, surprise, you're disabled now. You walk
with a cane, surprise, you're disabled. So we need housing.
We need transportation. Everything that you take for granted,
we need it every single day because, guess what, our lives
depend on it.
Cross disabilities. Don't single out one like
autism. Don't single out intellectual disability. Every last
one of us. We're all together. Don't give money to
intellectual and don't give it to physical. Give it to all of
us or don't give it to none of us.
REPRESENTATIVE BROWNLEE: Thank you.
MS. TUCKER: Thank you.
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CHAIRMAN DIGIROLAMO: You're welcome. Thank you.
MS. AIKEN: Hello. My name is Shawna Aiken, and I'm
here today from Erie, Pennsylvania. I happen to be a center
director. And a lot of what we talked about today I want to
illustrate in the story of one man. And I have his story and
his picture and his permission to share it.
We are, as a Center for Independent Living, a
nursing home transition provider. We've been working with a
young man who, a year-and-a-half ago, was in an automobile
accident. As a result of that accident, spent a significant
amount of time in the hospital, then a rehab facility, then a
nursing facility. We have been working with him for months to
get him out of an institution in Crawford County.
We have his home. We have his services all lined
up. One problem is that he's a quad and he needs intermittent
catheterization. Intermittent catheterization requires that a
nurse right now in Pennsylvania, the way the law is written
currently, has to come to him four to six times a day to
intermittently catheterize him so he can urinate. Also so he
can have a bowel movement, he must have a bowel routine.
We have his housing in place. We have his services
in place for his attendant care other than that service. We
had his nursing agency in place. And the day before he was
supposed to transition the nursing agency said they didn't have
the staff to provide his catheterization, so they bailed on him
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and delayed his transition. We have since been looking for a
nursing agency to provide this very common task, by the way, to
this gentleman. But because Pennsylvania changed the rules and
does not allow an agency like Voices for Independence to
perform that function, we can't do that for him.
The Department of Health says that a nurse must
perform that function. We are asking and you've heard today
that Pennsylvania develop a nurse delegation law. I'm from
Erie. I've worked with Representative Fabrizio on the law that
is currently --- that you have for current consideration. This
would prevent unnecessarily institutionalization. This
gentleman cannot go home. I paid for his rent in April because
on March 29th the agency bailed. We have 15 days --- 14 days
to find an agency that's willing to work for him to provide the
catheterization and the bowel routine or he can't go home in
April either.
Right now this gentleman is suicidal. He's
threatening to leave AMA, and the way he's planning on meeting
his need is by going to the ER four to six times a day to be
catheterized. Talk about the uncompensated medical care that
will have to happen to provide him that service if he's
successful in achieving that. And Pennsylvania will eat those
costs. Please take seriously the issue of nurse delegation
because you know what bothers me the most about this is that
people who are using Public Partnership under the
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consumer-directed model can hire anybody they want to provide
catheterization and a suppository on a bowel routine. They can
train them themselves to do it. But I, as a director of an
agency who has an attendant care license, can't have my nurses
--- I have two --- train and delegate that activity to a
qualified attendant that they believe is qualified as it stands
today. Please help us change that. Please help us figure out
how to get Tom and others like him home.
CHAIRMAN DIGIROLAMO: Thank you very much.
Appreciate ---.
MS. TUCKER: The sad thing is that Tom isn't the
only one. There's quite a few like this that are hanging on by
a thread.
MS. AIKEN: I also want you to know that, as I sat
here today, we got notification from the nursing home
transition team within the Office of Long-Term Living that from
this day forward --- and I hope I'm wrong about this. I'm
going to investigate while I'm here this afternoon --- but from
this day forward, the nursing home transition teams can't
intervene with somebody --- such as myself, I use attendant
care every day. I wouldn't be sitting here if somebody didn't
come with me from Erie to help me get dressed and get me here,
okay.
And I learned that if I go into a nursing home
tomorrow, because I'm already a recipient of service, I can't
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get nursing home transition services for 180 days. Now, that's
a new thing. And that --- we were just told to suspend serving
someone who we are currently serving who was in the community,
ended up in a nursing home, and now we can't serve him again
until he's there for 180 days. I don't want to be in a
situation where something happens to my health, and because I'm
on Act 150 I have to wait six months in a nursing home to get
back out before I can have support services. So if, in fact,
that's true, please stop that now, because that's going to
impact thousands of people with disabilities in Pennsylvania.
CHAIRMAN DIGIROLAMO: Okay. Thank you. And
unfortunately, we've run out of time, but I want to thank you
all for your wonderful ---. Go ahead.
SHARON: My name is Sharon. I'm the mother of the
committee --- and he should be at the table. But he's been
raising his hand forever. And all he wants to say is his name.
CHAIRMAN DIGIROLAMO: Go ahead.
SHARON: Tell them your name.
CHAIRMAN DIGIROLAMO: Turn the microphone on.
There's a button down at the bottom.
SHARON: But you all heard me; right? I'm usually
pretty loud. And all's I would like to say is I'm here for
families that you will never see because they're too busy doing
it every day, and they --- and as --- and Self-Advocacy Night
is when --- I'm a mom. I'm a family member. I go out and talk
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to family members, who all they say is somebody give us
information. You have people working, support coordinators and
people in different agencies. Somebody tell us what's out
there, how to use it and what to do if something goes wrong.
And while everybody's saying they're doing that,
there's too many people, too many families I have met --- I've
walked in and they're like I didn't know that. I didn't know
transition started at 14. Nobody tells me that. I didn't know
that I could get certain services. All I want to do --- if I
could get one thing, I --- like a family said, if I can get
one-day break, I would be happy. And they can get 30 days a
break, but no one's telling them that. And people are paid to
go into their homes and bring them the information.
So you know what, I'll do it. You probably won't
have to pay me as much. So I think that at the grass-root
level having families go out and talk to other families, answer
those questions, because we have people doing trainings, but
they're talking in a language that no one understands. But
I'll do it and other family members like me will do it. You
want to tell them your name.
JOSH: Josh.
SHARON: Joshua.
CHAIRMAN DIGIROLAMO: Do you have more?
JOSH: Yes.
CHAIRMAN DIGIROLAMO: Okay. Why don't we give the
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two young men a little round of applause? And again, we heard
some great, powerful, compelling testimony today. I want to
thank everybody for being here. Kevin and Steve, thank you
both for staying. I'm sure you've heard a lot. Probably a lot
of this stuff you have heard before, maybe some things that are
new.
And as Steve and Kevin testified, Governor Wolf, in
his budget, has proposed I think a significant amount of
additional funding to take care of some of the services that
you get. And you've got my commitment that not only myself,
and I think I'm speaking for everyone on the committee, that
we're going to do everything that we can as we go through the
budget process to make sure that additional funding stays in
the final budget, and if any way possible, to get additional
amount of dollars into the budget to take care of you. You
have my commitment that we're going to do our best to do that.
So again, thank you, God bless you, and this ends the hearing
today. Safe trip home, everyone.
* * * * * * *
HEARING ADJOURNED AT 11:59 A.M.
* * * * * * *
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CERTIFICATE
I hereby certify that the foregoing proceeding was
transcribed from the recorded audio on 04/16/2015 and that
I attest that this transcript is a true and accurate record
of the proceeding to the best of my ability.