Click here to view the heartwarming video shown at the Awards Banquet.

Click here to read the Daily Local News article and photos of the Awards Banquet

Today at age 14, Joshua functions at about a two-year-old development level. He needs constant supervision to ensure his safety and requires moderate-to-complete assistance with all tasks of daily living. He still has seizures regularly. He’s had various surgeries through the years, but as mom Susan describes, “He’s a very happy boy-full of hugs and kisses, smiles and squeals.”

As Susan recalls, “When Joshua was first born I kept asking, ‘Why? Why? Why?’ My husband, Stephen, reminded me that, at the time, we had a ‘high maintenance’ dog with many medical problems who we cared for as if he were human. Then Stephen said to me, ‘Susan, maybe God looked down and said look what these people have done for this special needs dog, just imagine what they could do for this child.’”

Susan and Stephen feel blessed to have The Arc, and there aren’t many services the March Family hasn’t used-from First Step to Fun Club and Camp Safari to advocacy. “We feel so lucky that we, and all families who have loved ones with challenges, have so many opportunities today,” Susan says. “It wasn’t too many years ago that people like Joshua would not have had the opportunity to go to school, live at home, play and learn with others, and would not have the chance to worship. We are so very fortunate that today our loved ones, no matter their ability, are able to love, learn, and worship the same as all others.”

In addition to parenting Joshua and working full-time jobs, the Marchs find the time to give back to The Arc. They have been an integral part of events such as The Arc Achievement Walk & Family Fun Day and Breakfast with Santa. Susan and Stephen gladly reach out to their friends, extended family, and colleagues to raise awareness and funds to support The Arc’s programs.

“Although having a child with profound disabilities does not stop our family from doing many things, there is a huge comfort and safety to be with our friends that we’ve met through The Arc and the many, many other families and friends we have made through their services,” the Marchs share. “We find comfort, complete acceptance, and solace here.”

Bobby was Agnes and Bill Chesko’s fourth child in four years, so Agnes was familiar with developmental milestones for babies and toddlers. “I remember when I would go to pick Bobby up out of his crib. He wouldn’t raise his arms to me like my other babies,” she remembers. “No one listened to me when I told them something wasn’t right with him.”

It wasn’t until Bobby was eight that the Chesko Family received a diagnosis. Physicians at Johns Hopkins told the family that Bobby had phenylketonuria, also known as PKU, a recessive metabolic genetic disorder. Left untreated, PKU can lead to problems with brain development. Estimates are that PKU affects one in 15,000 births. Today, PKU is easily diagnosed through tests administered to newborns and can be treated. Bill Chesko, Sr. was instrumental in advocating for legislation in Pennsylvania that made PKU testing mandatory before newborns can leave the hospital.

In line with how people with intellectual disabilities were commonly treated in the 1950s, Agnes and Bill were told to institutionalize Bobby when he was five. Similarly, the fall Bobby should have started first grade, Agnes was told by his local school that “There was no place for him.” A woman of action, Agnes took Bobby to West Chester Area School District Superintendant Stetson’s office. She left Bobby there and went outside to hide in the bushes. Thanks to Agnes’s persistence, Bobby was granted the opportunity to attend school. He attended the Child and Career Development Center until he was 21.

An active member of the Republican Women’s Committee, Agnes understands the importance of reaching out to governmental officials to get the job done. Bobby is a familiar face to local legislators, just as Agnes has intended. “I want them to picture Bobby instead of just ‘mental retardation’ when they’re voting,” she explains.

When a “right to occupancy” was holding up the expansion of what is now Handi-Crafters, Agnes took it upon herself to write to the governor’s wife-one mother of a child with special needs to another. Sure enough, after the first lady’s visit, the right to occupancy came through. Even though Handi-Crafters spun off from The Arc, the Chesko Family still remains connected. Bobby participates in Handi-Crafters’ day program for older adults. He rides there using The Arc’s adult transportation program.

Today Bobby enjoys a variety of The Arc’s recreation events, such as Phillies games. Agnes and Bobby, as well as sisters Pat and Nancy, are fixtures at The Arc’s signature events. Pat and Agnes have both served on The Arc’s board of directors, and Pat has worked as an advocate for the organization.

From the advisory committee 20 people, 90 percent of whom are self-advocates, formed a sub-committee known as the Chester County Self-Determination Action Team Self-Advocate Sub-Committee. Today, “the Team” consists of 14 self-advocates and two staff supports from The Arc. The Team continues to meet monthly to gain an understanding of, and commitment to, the principles of self-determination. Self-determination is based upon choice, control, quality, stability, safety, individuality, freedom, relationships, success, mentoring, accountability, collaboration, and opportunities to contribute to the community.

The Team believes that individuals with developmental and intellectual disabilities and their families deserve the very best the system has to offer. Through advocacy agencies like The Arc, people with developmental and other disabilities are learning they have abilities and are able to make their own choices. They are learning they can speak up and make choices in how they live, work, and spend their leisure time. Through groups like the Team, people with developmental and intellectual disabilities and their family members are learning their rights as well as the obstacles and issues facing them and the disability community at large. As a result, they are supported and taught to advocate for change for both themselves and the system as a whole.

After learning about the campaign to end the use of the “R” word at The Arc of the United States’ 2009 National Convention, members of the Team returned to Chester County to effect systemic change in Pennsylvania. The Team led a successful campaign to speak out against the use of the “R” word. They shared how hurtful the use of the “R” word is and asked Chester County residents to sign a pledge to not use the “R” word in a hurtful or derogatory way.

The campaign inspired the Chester County Department of Mental Health/Mental Retardation to officially change its name to the Chester County Department of Mental Health/Intellectual and Developmental Disabilities. Also citing inspiration from the team is Pennsylvania Senator Andrew Dinniman who introduced Senate Bill 458. Passed by both the House and Senate, then signed into law by Governor Corbett, the bill eliminated the use of the term “mental retardation” in the Mental Health/Mental Retardation Act of 1966. People-first language will now be used instead.

In First Step’s first year, 20 children were enrolled at a classroom at Kennett Meeting House. The program quickly grew to 60 children with the opening of classrooms in church basements in West Chester and Downingtown and a community center in Coatesville. Today, the program serves up to 80 children annually at its state-of-the-art West Chester location.

Since its inception, First Step has maintained its signature 3:1 student to staff ratio with physical therapy, occupational therapy, speech therapy, and nursing to support medically fragile children. The concept of an interdisciplinary team has remained a staple of the program. First Steppers’ needs have become notably more complex over the years as children are facing greater physical and medical challenges. “Even with these changes, what remains is the idea of community access and inclusiveness: what The Arc is founded on,” Bernstein adds.

The longevity of the core staff and the significant accomplishments of so many of the children who have completed the program, from speaking their first words to taking their first steps, are what Bernstein attributes to the program’s continued success. “Staff stay and grow with The Arc. They develop and share skills and competencies providing the consistency that is needed in understanding each child’s needs and working with the children day after day,” Bernstein says.

First Step presents life-cycle opportunities as many grown First Steppers later return for additional Arc services. More than half the individuals served today in The Arc’s recreation program, Camp Safari, and Comprehensive Employment Services programs are First Step graduates.

The Arc continues to find ways to fill the gap for children with disabilities. This includes integrating an autism support program into First Step 15 years ago. Art and music therapy are other additions. Thanks to The Arc’s 2000 capital campaign and subsequent gifts, First Step has a custom-built site with seven classrooms, a gross-motor room outfitted with specialized therapy equipment, an adaptive outdoor playground, cafeteria, nursing station, and therapy offices.

What does the future look like for First Step? As Bernstein shares, “We will continue to fill the gap and deliver the fundamentals that are the foundation of the program–the staff-to-student ratio, the communication and relationships with the children and families, and all the therapies combined. It’s what makes it work so well. No one else can do what we do, as well as we do.”

When Aidan started preschool, he wasn’t comfortable in group settings. “He also related much better with adults than other children,” mom Marie says. “Now he has opened up and tries to communicate with his peers.” Aidan’s teachers even describe him as a leader at school.

“Aidan loves to help, swing, and be silly,” speech therapist Diane Speroff shares. He was often seen taking orders and retrieving soda from the soda machine for Arc staff.

Thanks to his Dynavox Maestro, Aidan found his voice and can use this tool to speak in complete sentences. “He left First Step with great pre-academic skills,” veteran teacher Deb Landers comments.

During Aidan’s time at First Step, communication skills with his talker improved dramatically as did his ability to sign. Aidan’s social skills also grew leaps and bounds thanks to First Step. “He was so happy at First Step that we wish he could have gone there until he’s 18,” mom Marie says.

In addition to First Step, Aidan’s family has taken the opportunity to participate in The Arc’s family events: Breakfast with Santa and The Arc Achievement Walk & Fun Day.

The Arc of Chester County believes the need for education advocacy to facilitate improved school compliance with IDEIA within Chester County is great. As part of its commitment to represent the needs and wants of students with developmental disabilities, The Arc of Chester County established its education advocacy program in 1999. Since then, the program has supported and helped thousands of students with developmental and other disabilities realize their rights to free and appropriate public education.

“Families are the primary source of support for a loved one with special needs,” explains director of advocacy Connie Mohn. “Our role is to help them become the best advocates they can for their children.”

Standards for Excellence® are based on fundamental values such as honesty, integrity, fairness, respect, trust, responsibility, and accountability. The Arc’s programs and services as well as management, fundraising, and financial practices were examined in depth before the certification was awarded. The Arc of Chester County was the first Arc chapter in Pennsylvania and the second nonprofit organization in Chester County to be certified under the Standards program. The Arc is one of only 54 organizations in Pennsylvania and 200 in the country to achieve this distinction, which is available nationally to qualified nonprofits.

“Having this certification identifies The Arc as a quality organization and places us head and shoulders above other providers in the field,” Diane Carey, retired Arc executive director, says. “It also brings a level of credibility and prestige that can be hard to find in the nonprofit world.”