1 COMMONWEALTH OF PENNSYLVANIA HOUSE OF …SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 5...

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SARGENT'S COURT REPORTING SERVICE, INC.(814) 536-8908

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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.

1 COMMONWEALTH OF PENNSYLVANIA HOUSE OF …SARGENT'S COURT REPORTING SERVICE, INC. (814) 536-8908 5...

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