February 2013

PAWL Committee Members

Maureen Devaney

Co-Executive Director

Vision for Equality, Inc.

Audrey Coccia Co-Executive Director Vision for Equality, Inc. Sheila Stasko, Statewide Manager PA Waiting List Campaign Lisa Tesler, Policy Coordinator

Ned Whitehead, Project Assistant

Mary Saunders, Project Assistant

Mark Murphy, Executive Director Disability Rights Network Ilene Shane, Esq.

Nancy Murray, President, Arc Greater Pittsburgh Nathaniel Williams, PhD President & CEO Human Works Affiliates Deb Leasure, Coordinator Mentors

Kaye Lenkner, Coordinator SAU1

Teri Brewer, Trainer SAU1

Oscar Drummond, Self Advocate

Ashley Parks, Self Advocate

Nancy Richey, Parent Tom Carasiti, Parent Karin Annerhed-Harris Communications Manager, VFE

In case you missed it, here is an

excerpt from the Governor’s budget

address:

"I'd like to share with you my

experience on a visit I made recently

to Vision for Equality, a social ser-

vice agency in Philadelphia. I met

with families who had adult sons and

daughters with severe intellectual

disabilities.

Because of their conditions they face

challenging lives. And it became

even more challenging because

they "aged-out" of the services

the state provides for children.

They were put on a waiting

list—a waiting list that delays

their access to the help that

would allow them to work, to live

at home, to enjoy a full measure

of life's experiences.

But these families would not let

these disabilities and the waiting

list stand in the way of their

dreams.

continued pg. 15

Governor Corbett proposed $20M for the Waiting List

Next Year. What Do We Need to Do Now?

1. We need to keep the momentum going!

2. We can not become complacent.

3. We need to make sure funding gets to the people. 4. Make sure you are a waiting list subscriber to receive email updates.

www.pawaitinglistcampaign.org

Governor Corbett Speaks of the Waiting List

at His Budget Address

2

H i, I am Oscar

Drummond. I am a

young man, active in my

community, living in my

own apartment, and I

just happen to have

disabilities. I use a

wheelchair, need 24/7

supports, and have oth-

er medical issues. It can

be hard for people to understand me.

For most of my life I lived with my Mom. But like any

other young man, I knew it was time for me to get

my own place. My mom was worried about that.

She told me about all the things I could not do, and

that I would have to depend on other people –

strangers. She knew some folks worked with people

with disabilities for the wrong reasons, to be in con-

trol and to have power over someone else.

Even so, Mom did not stand in my way. I spoke up

about what I needed to live my life and to be healthy

and safe. It took a few years to try and teach sever-

al providers until I found the one that understands

that how I live my life is up to me, and supports me

to live just the way I want. Was it hard? YES! Was it

worth it? ABSOLUTELY!

I live in my own apartment now. I choose when I get

up and go to bed, what I eat and what I wear. I am

involved in my church, do lots with my family, and go

places with my friends. I work as a trainer for

people with disabilities and use the money I earn to

go on vacations.

I give back to my community by volunteering a lot of

my time to serve as a Board member of a local

agency as well as the President of the Board of Self

Advocates United as 1, a group of people with ID/

DD from all over PA.

My agency has a van dedicated to my use, and I get

all the supports I need for my physical and medical

needs right in my home.

Part of my volunteer work has taken me to visit with

folks who live in institutions. I hear from them what

their life is like. Many have no doors on their bed-

room, and very few have a key. Most share a room

and did not choose the person they room with. Their

belongings are often “borrowed” by staff or other resi-

dents. They do not choose when to go to bed or

what time to get up. Many are not “allowed” in the

kitchen and do not choose when or what to eat.

They do go places, but almost always as a group and

someone else decides when and where. They watch

TV in a room with others and do not get to choose for

themselves what to watch. Most of their days are

spent on the grounds going from building to building

and rarely seeing the “real” world.

I have learned there are many reasons why

people still live in institutions – and I have learned

that there are solutions. The supports people need

are not always available in the community – so pro-

viders need to work to increase what is available, and

ODP must make sure there is enough funding to sup-

port those needs.

Families do not always know the many ways

people can be supported – through participant

directed services where folks hire their own staff, to

day programs, and other services – but there are

ways they can learn, like through the trainings offered

all over the state by the PA Training Partnership.

Some people do not have families to help them figure

things out – but if there are well trained, dedicated

supports coordinators, they could get what they need

in the community.

Living in the community saves taxpayers a lot of money as well. The cost to keep a person in a state center is over two hundred thousand dollars. continued pg. 8

Oscar’s Self-Determined Life

3

The Facts are ...

Pennsylvania Waiting List Campaign Fact Sheet

January 2013

The Pennsylvania Waiting List Campaign’s goal is to end the devastation of Waiting Lists for persons with intellectual disabili-ties and autism who are in need of services through the Pennsylvania Office of Developmental Programs. The waiting list is comprised of self advocates, families, caregivers who are registered with the system and waiting for funding for services and supports, and also providers, agencies and supporters who work with us to reach our common goals.

Emergency Category – People need services immediately; their health and safety is at risk right now!

Critical Category – People need services within two years to stay safe and healthy.

Planning – People will need services within the next 5 years.

The Pennsylvania Waiting List Campaign asks for $20 million and a Five Year Plan

We are asking to follow the 5 recommendations and the five year financial plan as outlined in the

THE ADVISORY COMMITTEE REPORT ON THE WAITING LIST FOR

COMMUNITY-BASED SERVICES from 2008.

http://jsg.legis.state.pa.us

Provide services for those on the emergency list in FY 2013/2014 = $20 million for 1200 people

Commit to allocate funding sufficient to eliminate the emergency list within 3 years.

Formulate a fiscal plan for the critical and planning categories going forward through FY 2017/18, using the systemic approach outlined in the Waiting List Report.

"“During the course of my tenure, the goal is to eradicate that waiting list," Governor Corbett

told about 50 advocates, people with disabilities and family members during a recent event at

Vision for Equality in Philadelphia.

4,187 Emergency

Category

6,694

Critical

Category

4251 Planning

Category

People Waiting

15,132 as of January

31, 2013

4

All of these terms refer to a situation in which an

individual with an intellectual disability lives with

and shares life experiences with another person,

couple or family. It means that people mutually

decide to live together. It does not just mean a

place to live. It means that people share their

lives: care for each other, spend holidays and

family vacations together, and introduce each

other as “a member of my family”.

Many people with intellectual disabilities prefer to

live in a family setting and be a member of a fami-

ly as opposed to living in a community home with

housemates and staff. For example, a person

who was institutionalized at a young age may nev-

er have had the chance to live with a family. A

person who lived in a very dysfunctional family as

a young child may never have truly enjoyed the

benefits of living with a caring and supportive fam-

ily. Some people with intellectual disabilities de-

velop strong and caring relationships with staff at

community programs and decide that they would

like to be together as a family.

However, some families of people with intellectual

disabilities find it difficult to accept having their

family member become part of someone else’s

family. This is especially true when a person with

behavioral challenges living with their biological

family goes to live with another family. It is difficult

for the biological family to understand how anoth-

er family can care for the person and they could

not. Or, when an adult with a disability decides

that he would like to live with a staff person from

his community recreation program rather than with

his parents.

The person, couple or family who share their lives

with a person with an intellectual disability may be

referred to as ‘the shared living provider’, ‘mentor’,

‘host family’, ‘life sharer’ or other similar term.

Shared Living - Family Living - Life Sharing

What is it?

submitted by Nancy Murray

. . . some families of people with disabilities are asking if they can be the life-sharer for their brother, sister,

cousin or grandchild.

All of these terms describe a situation in which the

family lives with the person with a disability and

provides whatever support the person needs to

have an everyday life. Usually, the shared living

arrangement is in the person’s, couple’s or family’s

home or apartment, but people could also live in

the home of the person with a disability. The

shared living provider is typically compensated fi-

nancially, and/or the person may receive benefits

such as room and board. The shared living provid-

er may work for a provider organization as a full

time staff or contracted staff person. Or, the

shared living provider may have a private agree-

ment to provide supports to a person.

As shared living, family living and life sharing have

become service options in more states for people

with disabilities, some families of people with disa-

bilities are asking if they can be the life-sharer for

their brother, sister, cousin or grandchild. Given

the increasing shortage of direct care staff, state

budget crises, and the waiting lists for services for

people with disabilities, states are beginning to ex-

plore issues, including:

Compensating family members as life-

sharers,

Developing policy on when and how fami-

lies as life-sharers will be approved,

Deciding which family members will be

compensated,

Deciding if should there be limitations on

the supports/care provided,

Deciding whether family members should

be expected to meet the same qualifications

and attend the same trainings as non-family

members?

Deciding whether legal guardians can be

paid care givers?

continued on pg. 11

5

S tacie likes living in her little town in Northeast

PA because everybody seems to know her and

really care about her. They worry about her and

what is going to happen when she graduates. She

has a lot of friends through school. Stacie is a

young lady who has just turned 21 in November of

2012. This is her last year of high school and she

will be aging out of school in June 2013. Stacie

has been part of the Children and Youth Services

until her 21st birthday. She had been moved be-

tween 7 different foster homes since she was 6

years old. On her 21st birthday, Stacy was

dropped by CYS. She has no Home and Commu-

nity Waiver Services. Her funding is currently be-

ing paid through Base Funds from the County.

They are paying for her Life Share at the moment,

but are not sure how long that funding will be able

to last.

Stacie is not alone. Her twin sister is living in a Life

Share situation also. Together, the county is pay-

ing over $52,000 for the two young ladies.

That doesn’t take into account any other sup-

ports and services that they will need when they

graduate or the need to transition into work and

community opportunities.

Stacie has lived 2 ½ years with Miss Thomas as

her Lifeshare Family. Miss Thomas was coach-

ing the JV team at her local school. Stacie came

out for basketball one year. She had to work

through some things with her participating due to

her age. She had gone through her graduation

exercise with her class but had come back to

continue her education until she was 21. Stacie

came to a few practices, but really didn’t like all

the work that went into getting ready for the sea-

son. Miss Thomas asked Stacie if she would like

to be a part of the basketball program without

having to do all the running. Stacie was given the

title of Assistant Coach. She became a shining

light for the basketball program. Stacie doesn’t

sugar coat it, she tells it to the players like it is.

When Miss Thomas was promoted to the Varsity

Girls basketball job, Stacie came with her. Stacie

and the coach and the girls from the team have

built a friendship that continues to this day. Miss

Thomas tells of the story about going to see an

Elvis impersonator after this past year’s season.

Stacie attended all the home games. She had

her Assistant Coach shirt that she wore to the

games. The student athletes were very support-

ive of her. They would laugh and carry on with

her but they also respected her and looked out for

her at school. Miss Thomas is hoping that Stacie

will be able to continue to be a part of the basket-

ball program under the new girl’s basketball

coach.

Meet Stacie! by Ned Whitehead, Stacie’s Advocate

Stacie with Governor Corbett

continued pg. 9

6

PUNS – Top Priority for Those Who Wait by Lisa Tesler

This year’s waiting list initiative was great news for more than a thousand families in Pennsylvania and re-

minded us of the importance of good data and accurate PUNS forms.

For those of you who are new, the Prioritization of Urgency of Need for Services (PUNS) is the evaluation

tool used by the Office of Developmental Programs to understand how many people with intellectual disabil-

ities need services, what types of services they need, and when they need them. The data collected is

used to identify the scope of the waiting list and how dramatic the needs are for people. When the waiting

list initiative was passed by the legislators and signed by Corbett as part of the budget, the PUNS form was

the basis for the funding allocation. Unfortunately for some elderly caregivers, they were not identified as

over the age of 60 on their form…and therefore were not “counted” in the data that drove the budget deci-

sions. The state discovered that approximately 350 elderly caregivers were not properly counted in the da-

ta, and therefore were not budgeted for and could not receive waiver funding this year.

As family members, we need to make sure our PUNS are updated each year and that all the relevant cate-

gories are marked yes. The PUNS is the gateway to services and the data is essential for ODP,DPW, the

legislators and the Governor to grasp the scope of the problem.

If you need services within 5 years, you need a PUNS form. It’s just that simple. If you need a service,

make sure your supports coordinator marks it “yes”. If you need services immediately (within 6 months),

make sure you are in the Emergency Category. Sounds simple, but clearly some mistakes have been

made.

continued on pg. 14

PUNS as of January 31, 2013

By Region, County Joinder, Urgency of Needs and Age Group

Age Group Critical Emergency Planning Grand Total

01: Age 17 or Below 1,611 450 1,598 3,659

02: Age 18 to 20 1,483 835 665 2,983

03: Age 21 275 427 56 758

04: Age 22 to 29 1,051 985 493 2,529

05: Age 30 to 39 671 499 529 1,699

06: Age 40 to 49 718 389 439 1,546

07: Age 50 to 59 582 417 297 1,296

08: Age 60 or Above 303 185 174 662

Grand Total 6,694 4,187 4,251 15,132

PUNS Numbers show that people of all ages are on the waiting list.

7

D ear Wanda,

I have heard a lot

about waiting lists for services

through the county programs and

about the PA Waiting List Cam-

paign, but my child has autism.

Does the waiting list include people with autism? Can

I go to the County MH/ID Office to get on the list?

Does this list include people waiting for the Adult Au-

tism Waiver?

Thanks,

Just Getting Started

Dear Just Getting Started:

Good Questions! Some people with Autism

will qualify for services through the Intellectual

Disability System and/or the Mental Health System

and should go to their county office to apply for ser-

vices. People who have both autism and intellectual

disability could be on the waiting list for ID services,

and many are. The Bureau of Autism Services is not

associated with the County ID programs or offices. In

order to apply for the Adult Autism Waiver or the Adult

Community Autism Program, you need to

contact them directly at 1-866-539-7689. Their

programs serve individuals 21 and older.

The Bureau of Autism Services does not main-

tain a waiting list, but keeps an interest list. There are

approximately 840 people with autism on the “Interest

List.”

The Bureau will mail out applications to those people

on the interest list as funding becomes available to

serve them. The Autism system does not use a

PUNS form to prioritize need.

Please visit www.autisminpa.org for additional

Information.

Wanda

D ear Wanda,

I heard about the Waiting List initiative at a

Partnership Training last fall and was so excited that I

called my Supports Coordinator (SC) right away to ask

her if my daughter (graduate, 2012) would get services

this year. My SC said that there were no new waiver

slots, that my sources were wrong. I then followed up

with the County people, and they confirmed that my

daughter was identified as a potential waiver enrollee.

And in fact, she did get the waiver in early December.

Question…if the budget was signed in July, why

didn’t my SC have information about the Waiting List

Initiative? Why are SC’s not up to date with systems

information? This isn’t the first time that this has hap-

pened…just last month I was told that they were NOT

using the new Outcomes process yet.

Thanks,

SC is Behind the Times

Dear Times:

We at the Waiting List Campaign strive to pro-

vide you and all families and self

advocates the most up to date information about the

system, the waiting list funding, and other

policy issues that impact services available. Please

continue to keep yourself educated and informed. The

Training Partnership for People with Disabilities and

Families is a great way to stay on top of things.

We don’t understand why some Supports Coor-

dination entities do not keep their staff well informed.

SCs have many hours of mandatory trainings to attend,

and should be receiving alerts and other resources to

stay on top of any changes.

If the problem continues, as a waiver participant,

your daughter can change her Support Coordination

Agency. You should also share your concern with the

County/AE, the Regional Office and the state by calling

the toll free customer service line at the Office of Devel-

opmental Programs. 1-888-565-9435.

Knowledge is Power!

Wanda

8

Oscar’s Self Determined Life continued from pg. 2

Many people served in the community use the Person Family Directed Supports waiver, which has a cap of

only $30,000.

I know families of people with disabilities were often told that an institution was the best place for their loved

one. They were hidden away “for their own good”. I don’t know why my family chose to keep me at home,

but I am thankful that they did. If I was in an institution I would feel like I was in prison.

When I visit institutions, I tell folks about the supports I get and the life I lead. They have lots of questions

and comments. I will never forget one young man who uses a wheelchair and a communication device.

After talking with him, he said, “if he can do that, so can I!”

Tell legislators to fund the waiting list to keep people out of institutions. It is the right thing to do.

Find us on Facebook at

PA Waiting List Campaign

Waiting List Initiative and Waivers Explained

Submitted by Patricia McCool, Bureau Director Department of Public Welfare, Office of

Developmental Programs, Bureau of Supports for Persons with an Intellectual Disability

This fiscal year brought about an exciting

opportunity for the Office of Developmental

Programs (ODP) to partner with the PA Waiting List

Campaign to implement a waiting list initiative!

Through a very successful series of discussions,

the Governor and the legislature agreed to support

this waiting list for 430 individuals though the

Consolidated Waiver and 700 through the PFDS

Waiver.

The Consolidated Waiver initiative was

designed to primarily support individuals who were

on the waiting list who also had at least one elderly

caregiver. The PFDS initiative was designated to

support individuals who were graduating in June

2012 who would need services to continue to grow

in their own community. Through further discus-

sions with the budget office, ODP staff learned that

while we could enroll more individuals than were

included in the initiatives, we could not exceed the

amount of funding that was allocated.

ODP staff did meet with the budget office staff

and proposed to use a small portion of the

Consolidated Waiver capacity to address the

needs of individuals who meet the criteria con-

tained in the unanticipated emergency category.

This was approved by the budget office.

ODP requested that the Administrative Entities

(AE) submit the names of the individuals in their

county who were graduating in June 2012 who

would be able to utilize the PFDS Waiver to meet

their needs, the graduating individuals who would

require Consolidated Waiver Capacity and the

same information for any individual who had

graduated in June 2011 who remained on the

PUNS list as unserved.

A similar list was requested from the AE was to

identify individuals in the Emergency Category of

PUNS who had at least one elderly caregiver who

would need the Consolidated waiver to

address their needs, and who would need the PFDS Waiver to meet their needs. continued on pg. 15

9

Last year we received $17.8 M for the waiting list. That meant every one of the 700 High School

graduates should have received funding. 400 aging caregivers in emergency category who are over 60

should have received funding. This year the announcement was made that $20 Million will be made

available.

How Can We Support the Waiting List?

1. Call, email, write or visit your legislator.

2. You might need to do this many times.

3. You need to get your friends and neighbors

on board to support this cause.

4. Visit pawaitinglistcampaign.org website

and visit on Facebook.

5. Take your son, daughter, or best friend

with you on legislative visits.

When Do We Begin?

1. Now is a good time to begin fostering a rela-

tionship and informing your legislator about

the need for adequate funding.

2. Watch timing. There are certain times of the

year when activities must happen. That’s

when we ask you to put some extra ‘oomph’

into making those calls or visits.

What Should You Avoid?

1. Talking about many issues at once. Focus.

2. Lot’s of small talk. You have 20 minutes to get your message across.

3. Never threaten. You want to be able to work with and go back to the legislator.

4. Guessing at answers. If you do not know the answer, say so. Then state that you will find

out the correct information and get back to them. They’ll respect your honesty.

5. Going to the meeting unprepared. You can pull information off the PA website or call the

office for more information. It helps to go in prepared.

Always, Always, Always, say “thank you.”

What Do We Need To Do Now?

continued from pg. 1

Meet Stacie! continued from pg. 5

Stacie also has been serving the past 2 years as assistant track coach. Stacie helps set up the hurdles and

other events. She says that she helps with everything. Even when it is cold and rainy, she goes to the track

meets. She gives papers for keeping score to the score keeper. Another job is to tell Starter when you are

ready the runners are ready.

Stacie has also participated in Key Club through the school and works at the local theatre. She gets to clean

and gets to see people. Stacie says she has lots of free tickets to go to the movies.

Without funding for Home and Community Based Waivers, Stacy will lose out on all of the connections she

has been able to make through her school and community. Stacie would lose out on her “Everyday Life.”

10

Join the PA Waiting List Campaign listserve.

Send your email addresses to

Sheila Stasko sstasko@pawaitinglistcampaign.org

Troy is in need of funding so he can be supported

out in the community after graduation. With this

funding he can put his transitional skills from school

to work and so he can be a productive member of

our community. He is also in need of funding so he

can receive the necessary services and supports

that he needs so he can continue to live at home

with us and remain healthy and safe when no one

else in our home is available to be with him.

The funding for Troy would be a life line for him and

our family so he can live his everyday life out in the

community where he belongs and to be as inde-

pendent as possible. We are asking you to please

provide the necessary funding for Troy so our family

can stay whole and allow the rest of us to continue

to keep our jobs so we can provide for our family

and not have to be forced to rely on the welfare

system for other services.

M y son, Troy Morgan is 21 and

participated in his graduation ceremonies in 2011

with his classmates. He returned to school for the

past two years to finish his education. Now that

he is 21, he will have no choice but to exit the

education system this year.

Troy has worked very hard for the past 4 years

with his hearing support teacher to transition him

into the adult community. Troy has always been

accepted in our community. He has twin brothers

who had participated in sports while in school

and Troy attended their activities with us a family.

Our twins both opted to go to a nearby college so

they could live at home and continue to help us

with Troy as much as they could. The twins grad-

uated from college in December 2012 and now

have jobs working in the gas field. Troy’s dad and

I both work also.

In June of 2013 when the educational doors

close for Troy it will be impossible for us, as a

family, to continue to provide the 24/7 constant

supervision that Troy requires and yet remain

healthy and safe at home or in the community.

Bob and I have jobs which require extensive trav-

el and some overnight stays. Providing care for

Troy became a problem when the twins left home

for employment and would work up to 14 hours a

day, for several weeks at a time.

The Graduate submitted by Mary Saunders, Parent

Blake Troy Grant

11

Shared living continued from pg. 4

Many adults with disabilities and families of people of intellectual disabilities look forward to having a dia-

logue with the Office of Developmental Programs to develop policy on family members as life-sharers. If

the Office of Developmental Programs is sincere about putting the best practices of Everyday Lives and

Self-Determination into action, then family members as life-sharers presents an exciting opportunity!

Maintaining Momentum for Graduates by Nancy Richey, Parent

When a young adult with intellectual disabilities ages

out of the school system at 21, it is a critical time to

keep up the momentum and action toward finding his

or her place in the community, be in the workplace or

other type of day activities. Over the past several

years there has been a waiting list initiative in the

state budget that is intended to enroll these new

graduates into Medicaid waivers as quickly as

possible. The idea is that here is where we can

begin to end the wait and most meaningfully, and

cost effectively, launch real lives in the community

setting.

This is a wonderful thing indeed. However, by nature

of when those funds become available, there is a six-

month lag period for graduates and their families

between when they are informed that they will be

receiving the waiver and when they actually

receive it. So, during those six months of waiting,

families are forced to piece together support for their

graduate. This can mean that either parent might

have to quit working to stay at home with their son or

daughter, creating the ripple effect of lost

income for the family and even loss of their home.

Not to mention, the hard-earned skills and strengths

of the graduate are lost due to lack of structure and

continued learning, thus wasting years and years of

educational investment in that individual student.

Plus, mental health issues can quickly arise due to

the idle time, isolation, and disappointment.

A simple solution would be to budget funds

EARLIER for the student approaching gradua-

tion. For instance, if Mary is in scheduled to

finish high school in June 2015, what if her

waiver funding was budgeted for a half year

before graduation so that there could be a

gapless and seamless transition to her life in the

community? Yes, this would take some careful

planning, but it would most definitely best serve

our young adults, preserve our families and

homes, and simply make the most sense in

terms of the passage from the educational

system to the community system of services

and supports.

12

Meet the Carasiti Family Submitted by Tom and Teri Carasiti

W e live in Pike County and are the parents of

3 sons. Our youngest, Glenn, is age 21 and is

intellectually disabled. Last June, Glenn graduat-

ed from Wallenpaupack Area High School. Prior

to graduation, we were devastated to learn his

development would end and he would be on a

waiting list with about 15,000 others hoping for

programs or services. It was difficult to imagine

that after an investment of 18 years of specialized

education and countless task repetitions, Glenn

would be idle at home without a

chance to use or develop new

skills. Glenn was facing adulthood

with no hope for work and opportu-

nities to pursue his place in a

productive community.

With thanks to Vision for Equality,

other advocates around the state,

and our executive and

legislative leaders, funding was

added to the state’s budget to address graduates

and other emergency candidates on the waiting

list. This fall Glenn was able to return to the shel-

tered work program where he was previously

trained during his last 2 years of high school.

The funds have made all the difference for Glenn.

Like the rest of us, he feels so much more self-

worth having a job and saving for things he likes,

e.g. train or super hero magazines, DVDs, electric

piano, clothes with his favorite tractor logos, and

much more. Human Resource Center in Pike

County created the work program. It’s a ware-

house where Glenn and his peers package, label,

and box products for eleven area businesses.

Some of the products end up on shelves in na-

tional chain stores throughout the country. He is

exceptionally proud, in his own words: “I’m an

adult, I’m responsible, and I have a job.

We pay him $10 a day which he saves for his next

purchase goal. He recently bought an electric fire-

place and heater for his room and is now saving for

four late 1990s train catalogs. If not for the admin-

istration finding the funds, he would be home idle and

regressing in skills, development, self esteem and

ultimately depression would be added to his many

challenges in life. Without state and federal funding

for these programs, Glenn would have sixty years

ahead of him with no goals or dreams.

Every year Glenn makes a

Christmas list. He has no

problem with ideas and it’s

usually at least a full page

long. He’ll start in October

and adds to the list right up to

Christmas. This year it was

December and he hadn’t

started his list. We asked him,

“Glenn, where’s your Christ-

mas list?” His answer, “No, I don’t need a Christmas

list. I have a job. I make money and can buy things.”

Though severely intellectually disabled, Glenn has

made the connection between working and having

pride in what he’s accomplished through his earnings.

Additionally, the funding has helped many families

avoid the terrible decision of which parent quits work

to remain at home with their adult son or daughter;

possibly reducing a household income by 50% and

risk losing their home. Or making a single parent

choose between going on welfare or keeping their job

but risking their son or daughter’s safety being home

alone.

We’ll continue to work with Vision for Equality to en-

courage our state’s leaders to provide for others who

need programs or services to participate in their

communities.

13

Restore Human Services Funding: Support HB 315 Submitted by PAWL

Repesentative Gene DiGirolamo, (R) Bucks Coun-

ty, chair of the House Human Services Committee

has introduced House Bill 315, a

supplemental appropriation bill that restores

$84 million in Human Services funding that was

cut as part of the fiscal year 2012-2013 state

budget. If it passes, the cuts would be restored

immediately, making a critical difference for many

individuals and behavioral health organizations

across the state.

In his memorandum to the General Assembly,

DiGirolamo says, “This legislation will return the

line items to their funding levels from FY 11/12.

There is sufficient money on the balance sheet for

this fiscal year that allows us to make these badly

needed restorations without adversely affecting

our cushion for the current year or impeding the

carry over for next fiscal year”.

As of February 2013, the following representatives

have signed on:

DiGirolamo, Bishop, O'brien, Pashinski, Parker,

Brownlee, Haluska, O'Neill, Haggerty, Neilson, Der-

mody, Boback, Longietti, V. Brown, Stephens, God-

shall, Santarsiero, Millard, Cohen, Scavello, Carroll,

Readshaw, Schlossberg, Caltagirone, Hess, Kortz,

Thomas, Gibbons, Murt, Mahoney, Hahn, Kinsey,

Youngblood, Deluca, Molchany, Matzie, Galloway,

Fabrizio, Cruz, Delissio, Maher, Simmons, P. Daley,

Freeman, R. Brown, Harkins, Heffley, Ravenstahl,

Deasy, Schlegel Culver, Quinn, Briggs, Davidson,

Goodman, B. Boyle, Farry, Dean, Bradford, Sims,

Sturla, Neuman, Snyder, Reese, D. Costa, White and

Kula.

If your representative is not in this list, urge him/her

to support HB 315 to restore the funding that was cut

last fiscal year. If your representative is on

the list, thank him/her.

YOU can make a difference. Write a letter to your representative or visit him/her and tell your story. Describe

how the cuts have impacted the life of your loved one and your family. Explain how the funding restoration will

help. This is an opportunity to restore Human Services funding and prevent more cuts and to make a

critical difference for many individuals and behavioral health organizations across the state. Act NOW!

Tom Corbett Sheila Stasko

Governor PAWL Manager

14

PUNS continued from pg. 6

After conversation with the PA Waiting List Campaign, ODP determined that 75% of the PFDS Capacity and

60% of the Consolidated Capacity (minus the 50 held back for unanticipated emergencies) would be commit-

ted to the AEs based on the data they submitted. Following those guidelines, ODP distributed 523

waiver capacity to the AEs to address individuals who graduated in June 2012 who would have their needs

best served through the PFDS Waiver. For individuals with an elderly caregiver, 228 capacity was committed

to the community. Additionally, two AEs identified that they had no need for Consolidated Waiver but could

support 12 individuals with an elderly caregiver through the PFDS and those capacity were distributed.

ODP also worked with the Waiting List Campaign to identify which entity of the Partnership would be respon-

sible for providing training to new enrollees and their families to ensure they understand the waiver and what

is provided, as well as the ISP process. That information was distributed to each AE with their Capacity Com-

mitment letters.

As of the beginning of February, 293 individuals were enrolled in the PFDS for the graduate initiative and 10

for the elderly caregiver category. In the Consolidated Waiver 141 individuals have been enrolled in the elder-

ly caregiver initiative.

If you need services within 5 years, you need a PUNS form. It’s just that simple. If you need a service, make

sure your supports coordinator marks it “yes”. If you need services immediately (within 6 months), make sure

you are in the Emergency Category. Sounds simple, but clearly some mistakes have been made.

The forms should reflect your situation accurately. You can answer YES to as many situations that apply to

you. Make sure you review the Final HCSIS form that is mailed to you after the meeting to check for mis-

takes. Make sure you have the dates your child is aging out of children’s services or graduating from school

reflected on the form. Make sure that you understand what you can do if you disagree with the way the Sup-

ports Coordinator submitted your information.

For more information on how the form is supposed to be used, visit www.The Training Partnership.org

website to look at the PUNS Manual or read the quick FAQ regarding the PUNS form. You can request

information and ask questions through your Supports Coordinator and their supervisor.

PAWL welcomes Bev Makereth as new

Acting Secretary of the

Department of Public Welfare.

and

Fred Lokuta as Deputy Secretary,

Office of Developmental Programs

15

Time to PUSH the Name Change...

From the Pennsylvania Department of Public Welfare

to the Department of Human Services to

help change public perception and to better

reflect the programs it manages.

URGENT!

LET’S GET THIS DONE!

CONTACT YOUR STATE REPRESENTATIVE AND

ASK THEM TO SIGN ON TO

REPRESENTATIVE TOM MURT’S BILL.

We Can.

We Will.

We Must.

End the Wait!

Governor Speaks continued from pg. 1

Brittany Stevens is here today with her

mother, Harlena Morton. Harlena wakes up at 4:30

every morning. She makes sure Brittany has physi-

cal therapy. She makes sure Brittany has a lunch

ready for later in the day.

All Brittany wanted was a chance to work, to

have the same opportunity as the rest of us. She

might have needed our help, but because we gave

her that help last year, she is ready to chart her own

course. A course fueled by courage,

passion and an independent spirit.

Because of our commitment last year,

Brittany is now off the waiting list. Her story and

those of so many parents and sisters and

brothers are tales of the every-day heroism shown

by the families and friends of our neighbors with

special needs.

That waiting list is a powerful metaphor for what

has gone wrong in our society. We need to act now

and we must not turn our backs on all the other Brit-

tany's who are out there currently on the waiting list.

That is why I am counting on the General Assembly

to join with me to make certain we pass this next

round of funding for expanded services for people

with intellectual disabilities.”

Waiting List Initiative and Waivers

Explained

continued from pg. 8

In the next few weeks, ODP will be distrib-

uting the remainder of the waiting list initiative capac-

ity to the Administrative Entities. The priorities for the

graduates will be any newly identified individuals

who graduated in June 2012, any individuals who

graduated in June 2010 or 2011 and then individuals

who will graduate in June 2013 who are on the emer-

gency wait list and are identified by the Administra-

tive Entity as being the highest priority.

The remainder of the Consolidated Waiver waiting list initiative capacity for the individuals who meet the elderly caregiver criteria will be distributed based on the identification by the Administrative Entities.

Overall, this has been a wonderfully collabo-

rative experience. We are ready to wrap up FY 12-13

and move on to a new initiative for FY 13-14! Thanks

to all the work the PA Waiting List campaign has

done to secure these wonderful opportunities for the

citizens of Pennsylvania!

16

Pennsylvania Waiting List Campaign Headquarters

4540 Best Station Road Slatington, PA 18080

Phone: 267-765-0301

www.pawaitinglistcampaign.org

Number of People Waiting

Total: 15,132 Emergency: 4,187

Critical: 6,694 Planning: 4,251

PUNS: 01.31.2013

Funded by

The Disability

Rights Network

of

Pennsylvania

Vision for Equality, Inc.

For the PA Waiting List Campaign

718 Arch Street, 6N

Philadelphia, PA 19106