2015 DISABILITY AWARENESS MAGAZINE

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Catholic

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PITTSBURGH

DISABILITY AWARENESS MAGAZINE

The Diocesan Deaf Choir interprets a closing hymn.

Opening doors | Parish advocacy w w w. p i ttsb urghcatho l i c.org Disability Awareness 2015

Pittsburgh Catholic Magazine 1

Awareness, advocacy, accessibility and acceptance of persons with disabilities is the act of loving God and our neighbors with all our heart and mind.

“There can be no separate church for persons of different races, colors, disabilities, or national origins. Indeed, the vitality of the Church can truly be measured by how we treat those whom society has often placed on the margins‌..The Diocese of Pittsburgh has worked for many years to ensure that we recognize all as brothers and sisters, that all are welcomed as persons of dignity and talent, that all are included fully in the life of the Church.â€?

Most Rev. David A. Zubik, DD October 5, 2012

2 Pittsburgh Catholic Magazine

Disability Awareness 2015

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Inside this issue: 4 | A mother¹s story:

How one family learned to deal with a son who has disabilities.

6 | Giving it all to God:

Surviving emotional turmoil with a little divine help.

8 | Responding appropriately:

Treating disabled people with the dignity they deserve.

10 | A welcoming community:

How a parish can strive to actively involve those with disabilities.

11 | Gifts from the Almighty:

Every gift matters. Every ability matters.

12 | Opening doors:

The diocese has begun a new special initiative.

15 | Journey to first Communion:

A child diagnosed with ASD wants to receive the sacraments.

16 | Speaking out:

Providing accessibility to all parishioners.

On the cover...

The creation of a fully accessible parish reaches beyond mere physical accommodation to encompass the attitudes of all parishioners towards persons with disabilities.

Pastoral ministers are encouraged to develop specific programs aimed at forming a community of believers known for its joyful inclusion of all of God’s people around the table of the Lord. ­—“ Guidelines for the Celebration of the Sacraments with Persons with Disabilities” U.S. Conference of Catholic Bishops

Cover design by Karen Hanlin

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Vol. 7, No. 3 Publisher | Bishop David A. Zubik General Manager | Ann Rodgers Editor | William Cone Operations Manager | Carmella Weismantle Disability Awareness Project Editor Willian Cone Associate Editors Phil Taylor (Special Projects) Chuck Moody (News) Staff Writer | John W. Franko Graphic Designers David Pagesh | Karen Hanlin Advertising Director Carmella Weismantle Account Executives Michael A. Check | Paul Crowe Michael Wire Circulation Mgr./Parish News Coord.

Peggy Zezza Administrative Assistant | Karen Hanlin Office Assistant | Jean DeCarlo

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Advertising: ads@pittsburghcatholic.org Editorial: editor@pittsburghcatholic.org Marketplace: www.pittsburghcatholic.org Pittsburgh Catholic Disability Awareness Magazine is a complimentary publication available at all 200 Catholic parishes in the Diocese of Pittsburgh from the Pittsburgh Catholic Publishing Associates, Inc. Paid first-class delivered subscriptions are available.

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Truly blessed

By ANNA MARIE SCOTT When I was approached by the diocese to write an article for the Disability Awareness magazine, I was at a loss as to what I could talk about. I asked my husband and one of my sons for input. I decided to start off with a 1987 essay by Emily Perl Kingsley entitled “Welcome to Holland”: “I am often asked to describe the experience of raising a child with a disability — to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this …

“When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans … the Coliseum, the Sistine Chapel, gondolas.

You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go.

“Several hours later the plane lands.

The stewardess comes in and says, ‘Welcome to Holland!’ ‘Holland?’ you say.

‘What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.’ But there’s been a change in the flight plan.

They’ve landed in Holland and there you must stay.

“The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.

“So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole

4 Pittsburgh Catholic Magazine

new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy.

“But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips.

And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, ‘Yes, that’s where I was supposed to go. That’s what I had planned.’ And the pain of that experience will never, ever, ever go away. The loss of that dream is a very significant loss.

“But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.”

I chose this essay to express what I know for sure about everyday life. It can throw unexpected curves that can devastate our lives forever, or turn them around and truly receive the blessings God has intended for us.

When a family has to deal with a disability it can be devastating. However, it can be a time to grow strong in your faith and gain a positive outlook. You will do this in several stages.

First you go through a grieving stage, anger and denial. Next comes acceptance. Now this is where your faith deepens. You take the attitude that God has a plan. He chose you to be a caregiver for your loved one. God enables you to educate yourself about your loved one’s needs. In turn, you become a messenger to empower others about the “abilities” that are often overlooked.

You will begin to see things in a different

light. Things that the average person may take for granted are BIG triumphs for the person with special needs. For example, my son is 19 years old and learned how to tie his shoes at the age of 15.

So many people said to me, “Buy him Velcro shoes, this would be better and easier.” I refused to buy him Velcro shoes because I knew he would tie his own shoes. Then one day he did it. Wow, that was a happy day. We continuously cheered him on by asking him to do it over and over again. He was so proud of himself. The smile on his face was absolutely priceless.

As another example, my son was in a specialized behavior support program for almost two years. Before he entered the intense treatment program, sometimes he would have meltdowns (screaming, hitting himself and kicking) out of frustration in unfamiliar places.

During the two years my husband and I had monthly progress meetings that consisted of at least 15 or more people: doctors, Allegheny County professionals, behavior specialists and educators. More than half never met our son. Knowing this, we wanted those who had never met him to be able to put a face to a name.

Therefore, on the last day of the program we wanted our son to introduce himself and say thank you.

A week before the meeting, we were met with opposition by a few of the administrators. There were concerns that his behavior might be an issue. I was asked, “Are you sure this isn’t just for you?” I told them, “Yes, but it’s more for my son. I have faith in his abilities; I would never set him up for failure.”

See Blessed, Page 6

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Pittsburgh Catholic Magazine 5

Overcoming difficulties

By CARLA L. MENOSKY Life is a journey. I have overcome difficulties/obstacles in my life and, with hope, love, discipline and God, I have survived. Though others have experienced hardships and tragedies, I learn from others as I hope they learn from my journey on earth.

God gave us the Book of Psalms — a workshop manual full of doubts, fears, resentments and deep passions combined with thanksgiving, praise and statements of faith. Every possible emotion is categorized in the Psalms.

I try to control the stress in my life and “block” myself from feeling negative emotions. Though sadness and tragedy are part of life, with a good support system and a Christian life, I can get through “emotional

Give it all to God — regrets problems ambitions fears dreams weaknesses habits hurts hang-ups

turmoil” and succeed. The more we let God take over, the more our “true” selves will become clearer because he made us.

In the past, I had difficulty with my emotional health. God guided me to find the necessary supports and treatments, including medication, therapy and selfdiscipline. I have been a functioning member of society. There are always those less fortunate than I am — may God help them, too.

So give it all to God — your past regrets, your present problems, your future ambitions, your fears, dreams, weaknesses, habits, hurts and hang-ups.

Your wisest moments will be when you say yes to God. Menosky is the parish advocate at St. Stephen Parish in Pittsburgh’s Hazelwood neighborhood.

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When the day came, my son entered the room, sat down nicely with a big smile and read a two-line speech: “My name is Alexander. I came today to say thank you.”

Everyone applauded and several people had tears in their eyes. This was a major triumph. You see, my son is both autistic and has an intellectual disability.

Where does Alexander go from here? Presently, we are collaborating with his educational team to develop a vocational program for him. Since Alexander is quickly moving into adulthood, it would be unfair to put limits on him without giving him the tools to build his skills.

Therefore, it is our job as his family to help present the opportunities to him that we know he can accomplish.

A special note to parents: Don’t spend “your whole life mourning” where you believe your child should be.

Instead, enjoy “the very special, the very lovely things” that he or she is capable of doing. Rejoice in knowing that your child is truly a blessing. I am a firm believer that God works wonders because he always has a plan.

Scott and her family are members of St. Valentine Parish in Bethel Park.

Disability Awareness 2015

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Now he and Rudy, his Goldendoodle, volunteer at schools, nursing homes, and at UPMC. To learn more about the UPMC Rehabilitation Institute’s eight locations, call 1-877-AT-REHAB (28-73422) or visit UPMC.com/MyRehab.

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Disability Awareness 2015

Pittsburgh Catholic Magazine 7

Social justice and empowerment for people with disabilities

By JANIE WELSH When you come into contact with a person with disabilities, what is the first response that comes to your mind? Do you feel pity for that individual? Do you silently think, “There but for the grace of God go I?” Do you feel uncomfortable in that person’s presence, or do you feel anxious and not know what to do? Or, do you just want to get away so that you are not forced to interact with that person, simply because you don’t know how?

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If any of these reactions feel familiar, you are certainly not alone. It’s a sad truth that we as Catholics know that we can be afraid of disability and feel incompetent to include them in our community and parish.

Often we feel that we have no idea how to carry on a conversation with a person with disabilities.

As a student in Duquesne University’s Master of Religious Education Program, I was to pick from a wide array of education courses that are offered, both to fulfill the degree requirements and to further my education in my particular areas of interest. As a teacher, I have had many disabled students in my classes over the years, and I’ve always been aware that I do not know how to be truly inclusive with these individuals. For this reason I felt drawn to the course on Social Justice and Empowerment: Special Education that was offered this summer.

“Empowerment” – YES! I want to be empowered and knowledgeable concerning the inclusion of disabled individuals. Even more, I want to help empower the disabled to comfortably be an equal participant in all aspects of society.

With great anticipation, I registered for the course. I was not disappointed. Dr. Temple Lovelace, associate professor of special education at Duquesne, literally radiates with her personal mission of helping others to understand how to appropriately respond to the disabled.

When I asked Lovelace to describe the course and its content, she responded: “The class Social Justice and Empowerment: Special Education is one of our foundational courses that aims to eradicate the untruths that are so commonplace in our society about people with disabilities.

“The Special Education Program at Duquesne University is one about inclusion and empowerment — not only of persons with disabilities, but of the vast numbers of family members, educators, community organizations and religious organizations that support them. “We attempt, in this class, to examine the barriers that exist for persons with disabilities in five major areas: education, employment, voice, justice system and provision of services. In each of these areas we define the barrier and seek out ways that, as educators, we can support and advocate for equity in our school and community systems. We also focus a great deal on the importance of service.

“In each of our other courses in the Special Ed Program, we focus on providing meaningful experiences which highlight a variety of field and practicum experiences across contexts (e.g. urban, rural, suburban).

In this course, we want to show educators how service is also a critical

Disability Awareness 2015

“Teachers and related service professionals can be a powerful force on the life of a person with a disability, especially when they collaborate with that person, their family and other caregivers. It is that collaborative nature that allows for a continuum of care that is exceptional. “What I want for people to understand about people with disabilities is that they are still excluded to a great degree in many aspects of society. Although we may not always be able to see a person’s disability, we always need to be prepared to reorient our environment and our practices to make sure that they are included in all that we do. “There are some powerful people with a wide variety of disabilities in our communities, and sometimes we do not do a good job of supporting their needs. In places, such as our local schools, communities and religious organizations, we can continue to work toward true inclusion, and in this course we aim to strategize innovative and unique ways of doing that.�

This class taught me that pitying those with disabilities is both an ineffective and inappropriate response. I had previously assumed that anyone with a disability wanted first and foremost to be rid of their disability. Not so!

What is needed is the knowledge on the part of we who do not have disabilities to make the necessary environmental adjustments for inclusion of all who are or wish to be fully part of the communities in which we share a common membership. If we think about it, isn’t that the response that Christ modeled for us during his time on earth?

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component to their future or existing careers. Those who take this class work alongside persons with disabilities in a variety of avenues.�

Because of Lovelace’s evident passion for her work, I asked her to describe her personal mission as she sees it. She said: “My personal mission is for educators to realize their importance on the disability movement. Historically, local churches and parishes were the site of many family and community-run programs for those with disabilities — especially before the law guaranteed a free and appropriate education. “In addition, educators have partnered with people with disabilities and their families in order to gain access to schools, financial and medical support, and accessibility options in public places. “Now, the movement continues as we look at ways we can increase self-empowerment and the ability for all PWDs to have a voice in their care and education, and to have the determination to get there. “Duquesne University is the perfect place for courses such as these to exist. The Spiritan tradition has foundations in caring and support, and as educators we learn in the Special Education Program how to put that tradition of caring into our work.�

Lastly, I asked Lovelace what message she wishes to convey to her students. She responded: “One of the first things I tell students about the course is that it is my job to put the advocacy and empowerment in what you know about special education. I want those who take my class to explore their thoughts, fears, excitement and goals as it relates to not only supporting those with disabilities, but also their classmates and friends.

Pittsburgh Catholic Magazine 9

A step forward, a step back:

The state of advocacy at the parish Level

By DEACON FRED ECKHARDT

have devoted three months to circulating and collecting the questionnaire to access the true needs of the parishioners.

The parish has sought to actively involve those with disabilities At St. Bernard Parish, we are poised to make great strides in parish life. To that end, we have, for example, an individual forward as advocates for persons with disabilities. We have a who is blind and who serves as a lector. This same individual core group of seven committed, dedicated, trained, certified and serves on the pastoral council. commissioned advocates. They meet regularly to face headAs with most parishes, I’m sure that any list of major on the many challenges that must be addressed by any parish achievements or positive statements is often followed by the wishing to make their community an open and welcoming site words “however,” “but” or “unfortunately.” for all individuals with disabilities.

Yes, we wish to be a welcoming, accepting and open parish; We have a pastor, Father David Bonnar, who “gets it.” He is however, we have to deal with the physical plant of St. Bernard. open to the advocates’ suggestions and is even willing to change The buildings were completed in the 1940s through the 1960s, things and spend money to meet the goals set forth by the long before there were any laws addressing disabilities and advocates. accessibility. The parish school, rectory and the parish center The advocates have composed a survey/questionnaire to are not accessible to anyone in a wheelchair, for example. There identify those in the parish with disabilities in order to set are no ramps or elevators. specific goals to help those in most need. The advocates Though the church is “accessible” to someone in a wheelchair, the outside doors are 10 feet high, solid wood and almost impossible for someone to open without help.

The entire parish is situated on a hill. There are more than 180 identified parking spaces, but because of the steep grade, GOLDEN GYG Y F R FROM OM GO L D E N TTECHNOLO ECHNOLO only four identified spaces are designated “handicapped,” and of those only two are on completely level ground.

Golden lift lift chairs arearethe onlyprogrammable programmable Golden chairs theworld’s world’s only lift lift chairchair St. Bernard’s is a parish of more than 3,000 families and approximately 10,000 parishioners. But after three months featuring positionsforfor featuringthese theseunique unique positions thethe of circulating the parish survey/questionnaires, only six ultimate experience! ultimatecomfort comfort experience! completed surveys have been returned to the advocates.

Though the advocates have extended invitations to a number of individuals with disabilities to be more involved in the parish, unfortunately, to date, only a small handful have accepted that invitation.

Discouraging? Disappointing? Maybe to some, but in the TV Watching Total Comfort Lift world of advocacy for the disabled the focus is on all the steps TV Watching Total Comfort Lift forward. Seldom is anything worthwhile ever easy. As a parish, we are grateful to have a group of advocates who are continually seeking ways to fully realize goals put forth in the parish mission statement: to have a welcoming community.

As a parish, we are also grateful to have a pastor who is Zero-gravity Trendelenburg supportive, encouraging and totally dedicated to make St. Bernard’s the “best it can be.”

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Deacon Eckhardt is assigned to St. Bernard Parish in Mount Lebanon, where he is also an advocate for persons with disabilities.

Disability Awareness 2015

Let us all be steward leaders with the heart of Christ

By SHARON A. BOGUSZ “There are different kinds of spiritual gifts but the same Spirit; there are different forms of service but the same Lord; there are different workings but the same God who produces all of them in everyone. To each individual the manifestation of the Spirit is given for some benefit.”

— 1 Corinthians 12:4-7 Looking back it was her deep and abiding trust in God’s love that taught me the most about what it means to be a leader with the heart of Christ. Every day she would open the doors, turn on the lights and quietly go about the business of readying the church for morning Mass.

As she straightened the sanctuary chairs, pruned the dead leaves from the plants, chased away cobwebs and cleaned the wax from the candle holders, she could be heard joyfully singing in a barely audible but clear voice, “Holy God we praise thy name, Lord of all we bow before thee …”

Her name was Betty; she was affectionately known as the “church lady,” and she was “a leader with the heart of Christ.” At the center of her service to the church was her love of God. Her work became an intercessory song of praise to God on behalf and for the church.

Her leadership (in what many perceived as “small things” and beneath them) was indicative of a humble heart attentive to others and at the service of the sacramental and evangelizing mission of the church.

She didn’t see herself as a leader or even an evangelist, but she modeled for me the essence of what God calls us to be — good stewards of God’s gifts and talents bestowed upon us. As the baptized, each one of us is called to cultivate our gifts, talents and abilities for the benefit of the kingdom of God, and celebrate the gifts of our brothers and sisters in Christ.

Disability Awareness 2015

There are many gifts — great and small — but all are given by the Holy Spirit for the continuation of Christ’s saving and redeeming work for the sake of the world.

Each member of the faith community nourished by the light and strength of the Holy Spirit contributes to the work of Christ. Everyone matters. Every gift matters. Every ability matters.

Let us each grow in attentiveness to the different kinds of gifts and abilities given to us by God. Let us celebrate the workings of the Spirit in every member of our faith community. Let us be steward leaders with the heart of Christ!

Bogusz is director of the diocesan Department for Parish Advisory Councils.

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Diocese of Pittsburgh inaugurates ‘Opening Doors’ celebration

By DR. GRETA STOKES TUCKER When you throw a celebration, Jesus told his followers, you must seek out and celebrate with those with who have disabilities. That is what Bishop David Zubik was to do Oct. 4 at 2:30 p.m. at St. Paul Cathedral as he inaugurated a yearly diocesan celebration for disability awareness.

The first “Opening Doors Disability Awareness Mass” acknowledged and celebrated the many gifts that people with disabilities bring to the church, especially to the Diocese of Pittsburgh.

The diocesan celebration at the cathedral will be held once every three years, while parish-based celebrations will be encouraged during the intervening years. The next diocesan “Opening Doors” Mass will be held in 2018 to coincide with the 40th anniversary of the U.S. bishops’ pastoral statement on people with disabilities.

Catholics who are blind, deaf or physically or intellectually impaired carry out important liturgical roles at the “Opening Doors” Mass.

It is a demonstration to the entire community that people with physical, visual, audible, intellectual and sensory disabilities and impairments also have significant gifts that

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they share with the church.

This triennial service at the cathedral will allow those with disabilities to interact with Bishop Zubik and experience his care and appreciation for their presence and service in the church. The parish-based celebrations will affirm that people with disabilities are part of our local family of faith, and that they bring many gifts and abilities to the parish community.

Invitations for the “Opening Doors” Mass were extended to parishes, educational programs, and residential homes and programs throughout the diocese, such as the McGuire Memorial Home and DePaul School for Hearing and Speech. The Deaf Choir of St. Mary of the Mount Parish was to participate in the liturgy, along with a sign language interpreter.

Ambassadors, identified by their green polo shirts, were to greet guests and provide assistance with parking and mobility. The dropoff area can be accessed from the cathedral driveway via Fifth Avenue. Additional parking was to be available at Oakland Catholic and Central Catholic high schools. The cathedral parking lot and upper spaces at Oakland Catholic are reserved for handicap parking.

Low-gluten hosts were to be available for those with particular dietary needs.

The Diocese of Pittsburgh has a long history of providing advocacy, awareness and celebration of people with disabilities.

Historically, the diocese has chosen special occasions and anniversaries to hold Masses that celebrate the life and gifts of those with disabilities. The last such diocesan Mass was September 2012 at St. Paul Seminary, marking the 25th anniversary of the creation of a diocesan office dedicated to people with disabilities.

Several parishes host yearly liturgical celebrations for disability awareness. Under the “Opening Doors” initiative, not only will these parish celebrations continue, they will be encouraged as the expected way for parish programs and ministries to be accessible and include people with disabilities into the full life of the church.

For additional information about the “Opening Doors” Mass, contact the diocesan Office for Cultural Diversity and Persons with Disabilities, 412-456-3170 or e-mail diversityanddisabilities@diopitt.org.

Tucker is director of the diocesan Office for Cultural Diversity and Persons with Disabilities.

Disability Awareness 2015

How I see things

By DEACON KEVIN LANDER Back in the 1980s, I started college as a normal freshman. But it soon became apparent that something was very wrong. Even though I always sat in the front row, I could not read the chalkboard. Driving became more challenging, and the simplest of road signs was difficult to discern.

After I told my mom, she made an appointment with an ophthalmologist. The diagnosis was kerataconus. I didn’t yet know that it meant an inexorable deformation of the cornea, but the doctor’s demeanor alone told me it was not easily fixable.

He assured me that this disease, although progressive, didn’t usually require major action until much later in life. So I wore my new glasses without complaint.

But by the time I graduated, glasses no longer worked. The corneas in both eyes were too drastically deformed. My doctor switched me to hard contact lenses to “push” the corneas back into shape. In no time at all, I was blinking out the contacts as they rocked on my oddshaped corneas.

My frustration grew as my ability to do normal things, like drive a car, was severely hampered. My dependence on others, especially my dear wife and young children, also grew. People would wave at me from across the room and I couldn’t see them, so they thought I was rude. Sunny days were the worst as I could not endure the brightness.

The disease progressed at what I considered an alarming rate. With each month I became more and more frustrated, fearful that my severely limited sight would ruin my life. I began to wonder how people with a disability, any disability, approached life.

I was frustrated at my failure to willingly accept my own cross. I would see people who had adapted to their disability and be envious of their courage. I wondered how most people could be so blind to the obstacles and challenges that people with disabilities face all day, every day.

All the while, I receded more and more into my own sadness. Would my wife ultimately have to lead me around? Would my kids have to do that, too? Why were so many people so thoughtless about anyone whose needs were different from the “norm?” I felt more and more helpless, and continually wondered how others coped so well.

In 1999, with legal blindness on the doorstep, I had a single cornea transplant, through the generosity of an elderly woman who had donated her corneas. Recovery was relatively short (about six weeks), and sight in that eye

Disability Awareness 2015

was better but would never be 20/20.

Two years later, I had a second cornea transplant. This time I was the beneficiary of a much younger man who had made this bequest to a stranger, but my recovery was far more difficult.

The surgeon warned me that perfect vision was probably unattainable.

By 2002, recovery was complete and, with the help of eyeglasses, I have achieved much better vision. I no longer dread sunlight. I no longer struggle with blinking out contacts while driving down the parkway. Today, I wear a contact lens and glasses at the same time.

My sight is very good, all things considered.

What remains with me, though, is wonder and amazement at how people with chronic disabilities manage to live full and happy lives.

They inspire me every single time I see them.

Virtually every single one I know approaches life with zeal and a smile.

My experiences cannot in any way compare to what most people with disabilities face. They were a brief season that left me changed and,

I hope, a better person. They have certainly made me a more grateful person.

First of all, I thank God for the two donors who gave me back my vision. Next, I thank him for the opportunity to experience what it means to have a disability. We can attempt to understand, and we can have compassion. But we cannot comprehend the challenges that those with disabilities face until we have walked in their shoes or rolled in their chair. God gave me the gift of a firsthand experience that has allowed me to understand the world as others encounter it. I pray that he will continue to give me empathy for those whose disability makes them stronger than I myself can ever hope to be.

Deacon Lander is an episcopal master of ceremonies who serves the Department for Worship and St. Margaret of Scotland Parish in Green Tree.

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By STEVEN K. SWANK Many parents face the difficult challenge of taking their child with special needs to Mass on Sunday. As a catechetical administrator in our diocese, I have encountered many families that endure this struggle.

As a parent of two children, one of whom has autism, I understand firsthand how daunting this endeavor can be. I also know how important it is for parents of children with special needs to share their stories with each other. Here is my family’s story.

When my son, Alex, was 3, he was diagnosed with ASD — autism spectrum disorder. My wife, Deena, and I now knew the cause of Alex’s scripting, stimming and tantrums. Deena immediately read every book about autism that she could find.

Alex began early intervention, going to DART preschool and receiving home hours with a TSS. DART stands for discovery, assessment, referral and tracking. We began to see improvement in Alex’s speech and behavior. Progress was being made, except in one area — going to Mass.

My wife and I were raised Catholic, and our faith has always been very important

Disability Awareness 2015

A family’s story Journey to first Communion for a child diagnosed with ASD

to us. We wanted to hand on the faith to our children, which included attending Mass, religious education classes and, of course, receiving the sacraments.

But Alex had a very difficult time dealing with the barrage of sensory input that came with Sunday Mass. We tried sitting in the pews, staying in the cry room and standing in the back vestibule.

We tried giving him books to read as a distraction.

Every week was the same, with Alex’s behavior escalating to the point where we had to leave hastily. I can remember one particularly bad Sunday (it happened to be Mother’s Day) where we drove home in absolute silence, tears falling from my wife’s eyes.

As Alex approached “catechetical age” I began to get anxious. My wife and I really wanted him to receive first Communion, but he could not even stay at Mass past the Gospel. We needed to come up with a better plan.

My wife continued to read and learn about autism while I had the opportunity to attend several workshops regarding special-needs children and the faith. One in particular, focusing on children with ASD, gave us some ideas on how to help Alex with Mass.

We developed a simple plan. At the time

I was working at a different parish, and our religious education class was also on Sunday morning, so the implementation of the plan fell on Deena.

Every week, she would take Alex and our daughter, Abby, to religious education class, then pick them up and take them to Mass. Deena created an incentive chart to motivate Alex to stay to a predetermined part of Mass. Each week she would encourage him to stay longer, knowing full well that some weeks would see more success than others. The chart also rewarded participation, as an incentive to get the kids involved in the Mass.

Deena found a spot in a pew near the back surrounded by parishioners who smiled more than giving dirty looks. The spot was on the opposite side from the organ, since the organ side proved too loud for Alex. It was also strategically located near the doors to lessen how much of a “scene” was made by an early exit.

With a particular tenacity that I believe can only be found in mothers, Deena followed this routine with the kids every single Sunday. For months and months the routine continued, until one day it happened — they were able to stay to the end of Mass. We were jubilant!

See Communion, Page 18

Pittsburgh Catholic Magazine 15

Be the voice your parish needs!

Holy Trinity Church before renovation.

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16 Pittsburgh Catholic Magazine

Just like our homes, at some point every parish church needs to have renovations done. Sometimes they are things like new paint or bathroom remodeling. Sometimes they are big-ticket items like an addition or a complete facelift to make the building more “ours” and a better reflection of who we are.

About this time five years ago, members of the building and grounds committee at Holy Trinity Parish in Robinson Township identified a number of items within the church that were starting to look a little shabby or were missing altogether — like a second bathroom to help accommodate people in a church that regularly sees more than 400 at a Sunday Mass (the line could get long), pew renovations, ceiling paint, new carpeting in the sanctuary, new air-conditioning units — all this and more. They didn’t really know the actual cost, but had a plan to do it in stages as money was raised so we wouldn’t have to borrow money.

When people got wind of the plan, some started to say, “Well, if we are going to do this, shouldn’t we also do that?” Subsequently, an ad hoc committee was formed to sort out all the different ideas and come up with a plan to implement them. The scope of the work eventually included remodeling the whole sanctuary as well as many other projects.

It took years to get all our ducks in a row. Divine providence stepped in just as we were going to roll the plan out to the parishioners (who had been informed every step of the way). The diocese began Our Campaign for The Church Alive! We See Voice Page 21

Disability Awareness 2015

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Pittsburgh Catholic Magazine 17

Helpful hints

By ELIZABETH SPOHN What if you found out you are part of the parish team as an advocate for persons with disabilities. “I didn’t sign up for this! How did I get on another committee at church?”

Understandably, this might be your reaction. However, you are a part of this team by virtue of your baptism and participation in your parish family. Without attending any meetings or serving on another committee, you already are a force for good that sets a tone to love as Jesus loves us.

You impact those around you on a one-to-one basis. Becoming aware of the needs of the person sitting next to you in the pew at church or as you leave at dismissal are examples when this might take place. Your church family depends on you; this is the first step. Becoming educated on how to implement this call to live your faith is another step.

Here are a few ways to move more deeply into your role as an advocate for persons with disabilities: • Treat all people as people first — as each of us would like to be treated. You can do this simply with a friendly smile or being sensitive to another’s needs at the moment, such as holding the door open.

• Knowing where a wheelchair is located in your church may be helpful knowledge at an unexpected time.

• Speak directly to the person with a disability, not just to the nearby family member or companion.

• Place yourself at eye level, in front, for easy conversation with a person using a wheelchair, crutches or a walking cane.

• Offer assistance and wait until the offer is accepted, and then ask for instructions.

• Overcome the tendency to turn away or ignore the person with a disability by seeing the wholeness of spirit beneath the surface.

• You can “check your language.” Do you say, “people with disabilities,” instead of “the handicapped or disabled?” What about saying, “She uses a wheelchair,” instead of “She is wheelchair-bound.” Can we refer to the “comfort room” rather than calling it the “cry room?”

• Try to remember that we all have disabilities, and for some of us they are more apparent.

• You can seek the eyes of Christ in people who are ignored or unrecognized with a simple “Hello.”

• The goal of the Parish Advocacy Program for Persons with Disabilities is to make it possible for all to participate fully in the life of the church. If you know of some way to foster this goal, please let it be known.

• As you pray for parishioners who are homebound or ill, include those who deal with disabilities every day. We can support them with our prayers for the patience and perseverance required for each individual situation.

Let us try to remember what the U.S. Conference of Catholic Bishops encourage: “… as persons with disabilities share their gifts and needs, they bring out the best in our mutual humanity. They challenge us to live the Gospel precepts of charity in the real world, to sacrifice some of our comfort for others, to take the time to enable them to be full members of society. They need to feel our solidarity with them, and to know their true dignity and worth as fellow sisters and brothers in Christ. Our own future with Christ depends on it.”

COMMUNION Continued from Page 15

As Alex’s first Communion day grew near, I realized that even though we had gotten Alex used to a typical Sunday Mass, he was not prepared for the differences that first Communion would entail. Using some wonderful online resources, I was able to create a social story about first Communion day that highlighted what else Alex could expect at this special Mass.

The catechetical administrator and pastor gave us a few low-gluten hosts so we could practice with Alex at home.

We held a rehearsal for Alex so that he could practice processing, receiving in the church and walking up to the altar to obtain his certificate.

Our parish has two options to participate in one of the “group Communions” or have first Communion at a regularly scheduled Mass, and so Alex and a little girl were the only communicants that day.

Although Alex could survive the hour of Mass, his stress level would often spike during this time. My prayer for Alex’s first Communion day was that he would find peace and be able to experience this day without difficulty. My prayer was answered completely, as Alex angelically processed into the church ready for his big day.

Alex received the Eucharist for the first time May 17, 2015. Tears came again, but this time they came to me, and this time they were tears of joy.

Now I am working at our home parish, so we are able to go to Mass together every Sunday as a family. We stay to the end of Mass regularly now, as Alex is determined to receive Jesus every week.

Occasionally we must still leave early, but this is to be expected.

Just the other week Alex calmly and quietly told my wife he was not sure how much more he could take (to be fair, a missionary priest was going on and on).

Swank is coordinator of religious education, youth ministry and safe environment at St. Malachy Parish in Kennedy Township.

Spohn is a parish advocate for persons with disabilities at St. Mary of the Assumption in Herman.

18 Pittsburgh Catholic Magazine

Disability Awareness 2015

Let’s Talk About Different Abilities The people we support have many life challenges, including physical and intellectual disabilities, psychiatric and neurological diagnoses, and more.

Their biggest challenge, though, is the labels that people place on them. Labels like “disabled,” ”incapable,” “restricted,” “incapacitated.”

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At InVision, we do not limit the people we serve. They are integrally involved in decisions about their lives. They determine where and how they live, what they eat, how they spend their free time, who they call friends and neighbors. This is what you and I want, and how we live. We believe everyone should be able to do this, regardless of their physical or intellectual abilities. And we help make that a reality for the people we support.

Thank you for supporting people with disabilities by smiling at them, working alongside them, and talking with them. You can also help by donating to organizations who provide services so they can live a meaningful life. InVision is one of those organizations. Thank you for your support. tel: 724-933-5100 12450 Perry Highway, Wexford, PA 15090 www.invisionhs.org info@invisionhs.org

Disability Awareness 2015

Pittsburgh Catholic Magazine 19

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Disability Awareness 2015

Holy Trinity Church after renovation.

VOICE

Continued from Page 16 designated the parish portion of the fundraising effort to go toward our renovations, which would still be done in stages as the money came in, but was now a much larger project than was originally envisioned by the parish committee.

Early on, when I heard about the initial project, I stepped in and said, “If we are going to spend all this money on renovations, then we need to do something about making our sanctuary handicapped accessible — not only for our parishioners, but for our priests who aren’t getting any younger.”

I knew once we did all the renovations that were being discussed it might be years before we would go back to the parishioners to raise money to do it again — maybe not even in my lifetime. It was now or maybe never.

My hope is that, should you get wind of any remodeling or renovations at your parish, you will speak up early in the process and advocate for the people with disabilities. Ramps, railings, lifts, pew cuts, maybe you are getting a new

Disability Awareness 2015

sound system — how about some listening devices that can be made available to people with hearing difficulties?

Just remember to allow the builders and architects to be creative as some modifications require compromise that may seem a little awkward at first because it is new.

However, it will eventually become “old hat” like things are done now. Moreover, if you meet resistance, don’t let that bother you. Keep knocking on that door.

One of the funniest things I ever heard was from the pastor, who said, “Why should we do that? We don’t have any people with handicaps here.” Well, of course not, if they know you can’t accommodate them! It is also something of a miracle because at least 20 percent of the people in the United States have a physical disability of one kind or another. If your parish doesn’t have “any,” that’s quite the special community.

Anyway, we moved the never-used, original baptismal font that matched the altar (we used to use a portable font) from the narthex to the side of the sanctuary at the top of the ramp that now allows parents and

godparents with mobility issues to fully participate in the rite.

We put handrails up to allow priests, lectors and extraordinary ministers of holy Communion easier access to and from the sanctuary, and ramped the step leading from the sanctuary to the sacristy. We also got listening devices for people who are hard of hearing. In addition, one of the three new bathrooms is handicapped accessible.

Everyone agrees it was well worth it.

Now it is your turn. Be that voice – be an advocate.

For more information about becoming a parish advocate for persons with disabilities or for help in discerning ways to better accommodate people with disabilities in your parish, and information that you can take to your pastoral council or parish staff, call the Office for Cultural Diversity and Persons with Disabilities at 412-456-3170.

Deacon Killmeyer is assigned to Holy Trinity Parish in Robinson Township as well as being a parish advocate for persons with disabilities and working for the Office for Cultural Diversity and Persons with Disabilities.

Pittsburgh Catholic Magazine 21

Engaging communities:

Lessons in accessibility from museums, visitor centers

By PETER ARGENTINE When we create films, media and interactives for museums, historical sites and visitor centers, they are designed from the start to meet Section 508 accessibility standards. The objective is that everyone coming through the doors will feel welcome and have as equivalent an experience as possible. Reviewing some of the accessibility approaches that are found in museums and visitor sites might suggest similar approaches in the church setting as well.

One Sunday 10 years ago, my father and I were sharing lunch after Mass at St. Bernard, and I asked him what he thought of an engaging homily. I was expecting to have an interesting discussion.

“I don’t know,” he responded with a chuckle, “I couldn’t hear a thing!” In addition to his hearing loss from serving in the artillery in WWII, he had severe macular degeneration, but you would have never guessed which of the two of us seated in the pew were actually hearing the homily.

If we are to be a welcoming church, we need to make the physical structures, communications and services accessible in anticipation of any visitor’s needs — not just those who are readily apparent.

In a recent issue of Museum magazine devoted solely to accessibility, Valeri Fletcher, executive director of the Institute for Human Centered Design, pointed out the challenge: “You have no idea who has heart disease. You can’t guess who has less vision and you can’t guess most people who have hearing loss. The people whom we need to welcome have nonapparent conditions.”

Many churches in Europe that attract tourists have audio tours in various languages. National parks have audio tours at their visitor centers and historic sites and trails, but they also have audio

22 Pittsburgh Catholic Magazine

description tours. These tours describe the artifacts, read the text on the labels, and try to provide as equivalent an experience as possible for the visitor with vision impairment.

In the church setting, perhaps a simple audio description tour of the church could be written and recorded for parishioners and visitors, describing the architecture, stained glass and altar, so that they more fully experience the sacred setting of the church.

New parishioners with vision impairment could be given orientation tours of the church and parish grounds. Parishes and the diocese should take special precaution that new members with vision impairment are added to electronic mailing lists, and receive electronic copies of all printed documents that are sent to parishioners and members of the diocese.

In addition to audio description tours, the videos that we produce for museums and visitor centers always have captioning.

This should be a consideration for any videos created for the Web or for social

media by the parish, diocese or Catholic schools.

Posted pictures on Web and Facebook sites should have written captions describing them. Assisted-listening headsets could be provided for those with partial hearing so that they might more fully participate in the Mass, but awareness of the availability of the devices would need to be publicized.

To increase engagement in the music of the Mass, vision-impaired and hearingimpaired parishioners could electronically receive advance notice of the choice of songs, so that they can access the text and/or music ahead of time. (As an aside, my dad belted out his favorite hymns by memory, even after he had a laryngectomy.)

Most technology today has an accessibility mode that reads for the visually impaired. However, these readers have difficulty with PDFs, as the text is embedded with images. If we want all members of the parish to share equally in the events of the church, bulletins should be available in “Word” form or equivalent, and some copies of the bulletin perhaps printed in a large print format.

While I enjoyed reading the bulletin to my father, other elderly people with vision issues might not have a caregiver to help them. There are accessibility standards and guidelines for websites that should be considered when updating or creating new websites.

At the Prado Museum in Madrid, masterpieces of art were duplicated using a special technique to create a raised texture, so that visitors with low vision could literally touch the “Mona Lisa.”

“For people with partial vision, this exhibit is perfect, because what you can’t see, you feel,” says Ana Rosa Argente, whose vision is deteriorating, but who See Accessibility, Page 25

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Pittsburgh Catholic Magazine 23

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Phone #

RULES/DISCLAIMER: To enter, complete the entry form here and mail it no later than Saturday, November 14, 2015, to: HANDEL’S MESSIAH CONTEST, PITTSBURGH CATHOLIC, 135 FIRST AVENUE, SUITE 200, PITTSBURGH PA 15222-1513; FAXES ACCEPTED AT 412-471-4228. Employees of the Pittsburgh Catholic Publishing Associates and Diocesan headquarters are not eligible. One entry per household.

Congratulations to winners of our Kennywood ticket contest Donald R. Leone (Senior Life & Resource Guide 2015), and Pauline Armor, Mary Ann Mulkerin, Michelle Mullin, Lorraine Manich, John Pfeffer (Healthy Spirit Mind & Body Magazine 2015).

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Disability Awareness 2015

Did you know?

is not yet classified as blind. “I can see light and some colors, but the rest, I use the texture to complete the picture in my mind.”

Translating this idea to the church, we might have special periodic tours where visitors with vision impairment can touch non-fragile stone or wood statues, providing that no damage will occur from limited contact. With the advent of 3D printing, small-scale duplicates could be created for touch without fear of damage.

Brian Carter, manager of exhibit experiences at Burke Museum of Natural History and Culture, suggests a starting point for addressing accessibility from a

Argentine and his family are members of St. Bernard in Mount Lebanon.

Planning to celebrate the Sacrament of Marriage or a 2015 Wedding Guide 50th Anniversary in the next six months?

Celebrated the Sacrament of Marriage or a 50th Anniversary Catholic in the past six months?

R

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Disability Awareness 2015

Continued from Page 22

needs-driven basis. “How can we better engage communities? We listen instead of talk, and we do it again and again and again.” Those in need of assistance will likely provide the best ideas for what is practical and desired.

The National Park Service has a great online resource for creating accessible exhibits and media: http://www.nps.gov/ hfc/accessibility/. While not all museum and visitor center accessibility practices directly translate to the church, using established guidelines for conveying and interpreting information can help to spark ideas that will engage all members in the activities and sacraments of our church and Catholic schools.

F

A billion people live with some form of disability. This corresponds to about 15 percent of the world’s population. Between 110 million and 190 million adults have very significant difficulties in functioning. Rates of disability are increasing, due to population aging and the global increase in chronic health conditions.

• Physical disability is defined as when a person’s physical functioning, mobility, dexterity or stamina is limited.

• People with physical disability make up the largest minority group of the United States.

• In the U.S., about 74.6 million people have some type of physical disability.

• In countries with life expectancies over 70 years, individuals spend on average of about eight years, or 11.5 percent, of their life living with disabilities.

• Companies report that employees with disabilities have better retention rates, reducing the high cost of turnover, says a 2002 U.S. study. Other American surveys reveal that, after one year of employment, the retention rate of people with disabilities is 85 percent.

• Almost half of the region’s population with disabilities resides in Allegheny County (47 percent), followed by Westmoreland County (14 percent). The city of Pittsburgh alone reports 14 percent of southwestern Pennsylvania’s population with disabilities.

• The incidence of the six categories of disability and functional limitation varies by age group. Among children ages 5-15, the most common type is “mental.” For adults of working age (16-64), the most common is “employment.” And among seniors (65+), the most common disability type is “physical.”

• The employment rate for people with disabilities is 15 percent to 25 percent lower than for people without disabilities (77.2 percent for people without disabilities, 55.7 percent for men with disabilities and 48.4 percent for women with disabilities).

• The city of Pittsburgh has much higher rates of people with disabilities living in poverty than any other area in southwestern Pennsylvania. Compared to the national average, the poverty rate among children with disabilities in Pittsburgh is almost double, surpassing the national average by 20 percentage points (25 percent nationally vs. 45.2 percent in Pittsburgh).

ACCESSIBILITY

“The two shall become as one . . .

Therefore, let no man separate what God has joined.”

— Mark 10:8-9

PITTSBURGH

Share your joyful announcement with the rest of the Diocese of Pittsburgh in the Pittsburgh Catholic’s full-color Wedding Guide to be released in early 2016!

Send your color photograph and a 110-word announcement postmarked on or before Friday, January 8, 2016, to:

Wedding Guide, Pittsburgh Catholic, 135 First Ave., Suite 200, Pittsburgh, PA 15222-1513 or e-mail khanlin@pittsburghcatholic.org.

For questions, call Karen at 412-471-1252, Ext. 3570.

Hard copy photos will be returned to those providing a self-addressed stamped envelope.

Pittsburgh Catholic Magazine 25

Program promotes well-being through opportunities for employment

By BRUCE CARMAN The desire to connect with others, to feel useful and valued is an essential element of the human spirit. The satisfaction and enrichment derived from work are vital to a person’s wellbeing and ability to lead a fulfilled life.

Pittsburgh Mercy Intellectual Disabilities Services, part of Pittsburgh Mercy Health System and Trinity Health, serving in the tradition of the Sisters of Mercy, offers vocational training, community employment opportunities and a broad array of other services to address the needs of adults with intellectual disabilities. Located in Wexford and Pittsburgh’s Brookline neighborhood, our licensed facility-based vocational rehabilitation programs offer light industrial assembly, kitting, packaging and mass mailing outsourcing services to local business and organizations.

Program participants perform work according to their individual abilities and work alongside their peers. Whether it’s stuffing or labeling envelopes for a bulk mailing, or assembling hardware or promotional kits, participants take great pride and satisfaction in contributing to the team’s finished product.

Vocational rehabilitation and community employment programs play a vital role in the lives of adults with intellectual disabilities. The work provides opportunities for individuals to be with their peers, share life experiences and actively engage in productive work.

Participants inspire, motivate and challenge one another to complete a common goal. Creative problem solving and shared accomplishments are celebrated through teamwork, which fosters a culture of respect.

Kevin Deeghan of Cranberry Township says the program fills a significant void for his 22-year-old son, Ryan, who completed high school last year.

“An important aspect of Ryan’s personal development is for him to have a job, be productive and earn a paycheck just like any other young adult. Ryan looks forward to going to work each day. He feels a sense of accomplishment and proudly describes to family and friends the work he does.”

Ron Norris of Ross Township says his son, Clint, 39, has participated in the program for 14 years. He says the experience “has been nothing but positive. It gets Clint out of the

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Photos © 2015 Micaela Young for Pittsburgh Mercy.

Patti L. carefully packages and labels a hardware kit for a lighting fixture.

house, he has many friends and it keeps his mind busy.”

Richileen Stupak of Pittsburgh’s Knoxville neighborhood says Pittsburgh Mercy offers a safe, caring and friendly environment and gives her sister, Lorraine, 46, “an opportunity to be part of society and develop learning and work skills to better her life. Lorraine is able to socialize with her peers, make new friends and earn a paycheck. The work helps her feel important, responsible and happy to be part of something that most of society takes for granted.”

Ideal Building Fasteners is one of the local companies that provide work opportunities to adults with intellectual disabilities. Program participants insert rubber washers onto metal screws and thread them into rubber grommets. Each order produces numbers in the tens of thousands. Participants also process hardware kits for Forms+Surfaces Corp. by assembling small cardboard boxes and packaging more than 20 variations of hardware kits that accompany products for installation.

Cintas Corp. contracts with Pittsburgh Mercy to recycle used hangers. Participants straighten and stack the hangers on wire racks. Last month, participants processed more than 178,000 hangers.

Program participants also proudly assembled 15 different types of credentials and lanyards for the 2015 Dick’s Sporting Goods Pittsburgh Marathon.

Other businesses and organizations depend on third-class bulk mailing services.

Lorraine S. meticulously pieces together hardware kits.

Program participants process everything from postcards to newsletters to formal invitations, which often require multiple inserts.

Among our customers is TFH USA, a worldwide distributor of special-needs toys. Participants recently processed more than 1,000 catalogs and other promotional materials for the company. Mailings are prepared according to customer specification and processed following strict U.S. Postal Service regulations for delivery, locally and worldwide.

“Working with Pittsburgh Mercy Intellectual Disabilities Services was truly a delight,” says Danielle Boston, director of administration at the Pennsylvania Independent Oil and Gas Association. “We appreciated the extra assistance with one of our mailing campaigns and plan to utilize their services in the future.”

In addition to attending to the needs and requirements of program participants, Pittsburgh Mercy staff members direct workflow, develop methods of production, oversee quality control and ensure the timely completion of each job.

Businesses and organizations interested in offering vocational rehabilitation and community employment opportunities to adults with intellectual disabilities are invited to contact Pittsburgh Mercy Intellectual Disabilities Services at 412-344-6400 or www. pmhs.org.

Carman is an employment training/production specialist at Pittsburgh Mercy Intellectual Disabilities Services, part of Pittsburgh Mercy Health System.

Disability Awareness 2015

Verland has many employment opportunities including RNs and LPNs Call HR at 412-741-2375 Disability Awareness 2015

ext. 1208 Pittsburgh Catholic Magazine 27

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Disability Awareness 2015