The Arc of Montgomery, Berks, and Bucks Counties

Our board members all have their own personal reasons for joining The Arc and dedicating themselves to the developmentally disabled. Many have children with disabilities, and they get involved to give them a better life. But in doing so, they become part of something greater: helping bring opportunity and hope to many other disabled people in our area.

It’s an endeavor 35 years in the making for Michele Mailman. She’s one of The Arc’s board members, and we interviewed as part of our Meet the Boards series. Our e-mail Q and A is below, unedited, so you can get Michele’s unvarnished take on how and why she got involved with The Arc, and why it’s important to her. Her story is an inspiration to anyone who’s considering getting involved, and everyone who already is. Enjoy!

Introduce us to Michele Mailman. Tell us a little about who are and what you do.

I have been married to my husband Steve for almost forty years. We have two children, Holly and Scott, and one grandchild, Evan. In 2006 I retired from the School District of Philadelphia after teaching for over thirty years. I found that I missed the kids and my colleagues, so I began substitute teaching the very next semester.

I usually work about six to eight days a month and I only work at the middle school that was my last assignment. I also spend two to three days a week babysitting for my grandson so that his mother could return to work as a speech/language pathologist. My schedule is almost as busy now as it was before I retired.

How did you get involved with The Arc board, and why?

Thirty five years ago, when I was still living in Philadelphia, I was asked to join a fund raising group of women called the PARC Aides who generated money through fundraisers for the Philadelphia Arc. After being a member for a year, my son Scott was born. He was diagnosed with a seizure disorder and developmental delays when he was eight months old.

While the Philadelphia Arc had spun off its infant stimulation programs years before, they were able to help me with my search for programs for Scott. To this day, I am still a member of that PARC Aides chapter that will, sadly, disband at the end of this year.

Twenty one years ago we moved to Montgomery County. I was approached by Ginny Conway to come on the board of the Arc of Montgomery County as she was beginning her presidency. We had known each other well when we both lived in Philadelphia since our sons were enrolled in the same KenCrest early intervention program. I was honored to be asked and felt that I would benefit from knowing more about how the system was accessed in Montgomery County.

Through the years I have been a general board member, chairman of several committees, president of the Foundation Board, and have held several offices on the parent board before assuming the presidency in June 2007.

I have maintained a sustained presence with the Arc because I feel that in some way I am giving back to the agency that has the mission of inclusion of people of all ages with developmental disabilities into the fabric of our general society and to remove barriers that prevent this from happening.

Why are you dedicated to the developmentally disabled community?

My initial reason for dedication to this community would, of course, be my son Scott. As any parent of a child with a disability, I have had my own experiences and have also shared them with others who have enlightened me with tales of their journey in this unique and challenging position.

Because I can look back at the progress that has been made and can envision where we need to go, I will remain involved in the endeavor to make our intellectually challenged community of adults and children gain access to all aspects of life, work and family they deserve.

What are some of your biggest concerns for the developmentally disabled right now?

I am concerned that the financial crisis facing our country will have a negative affect by making the funding needed to maintain and build programs for this community more difficult, and possibly, in some cases, cancel plans for the expansion of supports that are greatly needed at this time. I am afraid that the waiting list will not be addressed in a way that will provide services for families already long in need.

Besides the work The Arc is doing, are you doing anything else personally to help the disabled?

My son Scott lives in the community with two other young men with similar disabilities. Neither has a mother who is alive, and only one has a father, who is in poor health. I have made it a goal to create the kind of home in which I would like Scott to live by meeting regularly with the provider and staff, ranging from the director to direct care staff.

I am committed to request and, sometimes, demand improvements in both the physical condition of the home and the level of care the men receive. In doing this, I hope to improve the lives of all three.

I accompany staff to shop for the other men, make purchases for their rooms, and help identify programs that make their lives more complete. When I decorated and made new purchases for my son’s bedroom, I also made similar plans for upgrading the other two residents’ rooms. They are a family and I am proud that I can serve all three as a mother and a surrogate parent.

What can readers do to help out?

There are many ways people can help. We are always looking for and welcoming people to our boards that have the expertise and knowledge to help us grow. If serving on a board is not your thing, volunteering in activities such as sports and community outings is a great way to interact with people with intellectual disabilities. I believe by doing any of the above, they will feel enriched.

His name is Rob DiMarco, and he’s on The Arc’s Board. We talked to him recently as part of our Meet the Boards series, and learned about how his background in software and Web development brought him to The Arc.

Take a listen to hear him tell the story of when he met Paul Stengle, our Executive Director, and found out The Arc was in need of a tech guy to work on its Web site and blog. Rob proved to be the man, and now he’s the go-to source for anything tech.

Also hear Rob explain what it means to be a part of The Arc’s board, and why he thinks education is probably the biggest challenge facing developmentally disabled children.

There’s no denying the importance and value of education when it comes to raising a child with developmental disabilities. Parents should know what resources are available to them so that they can best support their child. They should be familiar with laws and policies surrounding access to care.

But for many parents — especially those who’ve never raised a disabled child before — getting this knowledge and education can be difficult. They’re left in the dark about services and programs that might greatly benefit them and their child.

We shed light on some of these resources when we talked to Arc board member Cat West as part of our Meet the Boards series. Our podcast is above for you to listen in.

You might recognize Cat as the host of Building Bridges in the Community, The Arc’s show on BCTV. In our podcast, Cat tells the story of her son Joey, who was born with Down syndrome. She reflects on the moment when she learned Joey had Down syndrome, and the emotional roller coaster she and her family went through. She explains the next steps she took to begin caring for Joey and managing his condition.

Then two year later, things became worse. Joey was diagnosed with autism. That’s when Cat became involved with The Arc. The organization provided Joey with autism therapy, which proved to be very successful. She says The Arc helped her learn so much about managing both autism and Down syndrome, and pointed her to the resources she needed to get educated.

Cat describes some of them in our interview, such as Right to Education Task Force, Montgomery County Intermediate Unit, and Variety the Children’s Charity. All of these organizations have local groups around the area. Cat also formed the Upper Merion Special Education Parent Resource INterest Group with four other parents as another knowledge and networking base for parents of disabled children.

Take a listen and learn more about resources you might not realize are available to you. Education can take away much of the anxiety in raising a developmentally disabled child, and it’s important to continue learning about new aids out there. Oh, and don’t mind the sounds of her children and dogs in the background! ;)

That was the theme of my podcast interview with Ed Sickles, one of The Arc’s board members. I talked to him recently as part of our Meet the Boards series. You can listen to our conversation here:

Ed has been involved with The Arc and helping the disabled since he was 15. That was about 40 years ago. He was a student at Abington High School, and started a recreational program for special needs students.

Listen as he tells the story of why he became so passionate about the disabled at an early age, and how he’s turned that passion into his life’s work. Ed is now a teacher at Upper Perkiomen High School in Pennsburg. Most of his students have minimal disablities.

Ed is also a service adviser for various programs at the school and in the local community that support special needs children and adults.

And his deep commitment of course extends to The Arc, where he’s served as a board member for 30 years. He spends time with the advocacy, parent, and foundation boards. Ed is also the legal guardian to a man with Down syndrome.

He is an inspiration to anyone who wants to help the developmentally disabled live better, fulfilling lives. In our interview, Ed drills down into what he thinks is the No. 1 reason preventing the developmentally disabled from achieving respect and equality. He also talks about how unfortunate financial circumstances have added to their struggle.

While Ed is concerned for the future of the developmentally disabled, he is still hopeful. He shares his perspective on how to we can create and take better advantage of educational opportunities to provide a higher quality of life to the disabled.

If you’re looking for some meaninful, low-cost ways to get involved, Ed offers some suggestions, and explains how we can help the community understand that disabled or not, we’re all the same and deserve the same opportunites in life.

We’re stepping behind the curtain today as we kick off our new Meet the Boards series. Patrick Hughes of Glenside is our first interview. In my e-mail Q&A with Patrick, we learn about his background, how he came to The Arc, and why it’s important to him.

Patrick describes how Ed Sickles, also an Arc board member, inspired him to join the organization. We have an interview with Ed in the hopper, so look for that soon too.

And just one more note before we get to the interview: We like to maintain authenticity when we do interviews, so we didn’t edit or delete anything Patrick wrote. Now that that’s taken care of, meet Patrick!

JK: Tell us a little about yourself.

PH: My name is Patrick Hughes. I’m 33/male from Glenside, Pa. I live with my 2 parents and 2 brothers. I have a sister who is married and a brother who is married also and lives in the Glenside area. I have 3 nephews and 4 nieces who are so cute.

I am a huge sports fan who likes to do sports stats and I know a lot of sports bits and information. I also like to do bowling, fishing, listening to music, and watch American Idol. I am very good with directions and maps.

I am the president of a club called the Abington Aktion club. I work as a dishwasher at Sunrise Assisted living in Dresher, Pa.

JK: How did you get involved with The Arc and its board?

PH: I got involved with Arc from Ed Sickles, who was a teacher of mines at Hatboro-Horsham High school in Horsham, and at Abington Senior High School in Abington. I wanted to see what Arc was, and Ed had asked me to be on to board for Arc.

JK: Why are you dedicated to the developmentally disabled in the community?

PH: I am dedicated to the developmentally disabled in the community because I know a lot of people who are disabled and they always need help in any way.

JK: What are your biggest concerns for the developmentally disabled right now?

PH: My biggest concerns for the developmentally disabled is for more people in the states to understand what the disabled people go through every day, and how they live and work in a real enviroment under pressure sometimes.

JK: Besides the work The Arc is doing, are you doing anything else personally to help the disabled?

PH: I am helping the disabled in any way possible.

JK: What can readers do to help out?

PH: I think that readers should look at ARC and see what programs are available in their communities and help out in any way possible.

The Arc of Montgomery, Berks & Bucks Counties has quite a team of board members behind it. About 51 people sit on four boards, including The Arc board, The Arc Advocacy board, Children’s Services board, and The Arc Foundation board.

But our members are far from just faceless numbers. Many have been touched personally by developmental disabilities. They are dedicated to their positions, and we thank them for all of their support in helping us bring therapy, care, advocacy, and guidance to the developmentally disabled.

Because our board members are a vital part of what we do, and are out there helping readers and others in the community, we wanted to give you the opportunity to get to know them better.

We’ll be profiling board members on the blog as part of out new Meet the Boards series. We’ll be doing podcast interviews and e-mail Q&As with the members, and posting them on the blog. Monday kicks off the series, so stay tuned!

If you’re a board member and would like to be profiled, just let me know by leaving a comment on the blog.

The Arc and many of its families know the important role that computers play in their children’s therapy and education, and what a crucial tool they are for researching and advocating equality for Pennsylvania’s disabled citizens.

That’s why we’re donating well-equipped, refurbished Dell PCs to Arc families tomorrow. We’ll be giving away the computers with flat-panel monitors, Windows XP, software suites, keyboards, mice, and discounted Internet service.

All families, friends, and media are encouraged to join us in what’s sure to be a joyful moment in the lives of our fellow community members. Meet other families with intellectually disabled children, and learn a little bit about how they are handling the issues we face together.

The donation ceremony is tomorrow, Oct. 2 at 10 a.m. at The Arc of Montgomery, Berks & Bucks Counties, 3075 Ridge Pike, Eagleville, Pa. For directions, click here.

If you can’t make it, we’ll be covering the event here on the blog. We’ll be posting video and pictures of the hand off, interviews with the families, and more.