A proud dad’s story

by Bob Glowacki

What a delight it was to go to church one Sunday and see Tyler Fech and his Dad, Kevin as servers. Tyler has Down syndrome, and robed all in white, he walked hand in hand with his Dad and younger sister to the front of Church. Too often we forget how much spirituality plays a special role in the lives of families and can also play a role in changing attitudes in a community. I was struck by the Fech family’s commitment to Tyler’s FULL inclusion into the community — including their faith-life — and asked Tyler’s dad to share his reflections on this aspect of their lives.

I couldn’t have been prouder

by Kevin Fech

Fifteen years ago, when my son Tyler was born, I was determined he would live his life as he sees fit, not as how others perceive him. Tyler is a thoughtful, caring and adventurous young man. He enjoys participating in everything that everybody else does.

Tyler also was born with Down syndrome and was later diagnosed with autism.

Faith is important to my wife and me, and it was very important that we expose Tyler to the same faith principles that we practiced. Tyler received his Sacrament of Holy Eucharist and became involved in a religious education program called SPRED at Saints Peter and Paul Parish on the east side of Milwaukee. SPRED stands for Special Religious Education for the Developmentally Disabled, and it’s a religious education program specifically designed to meet the spiritual needs of persons with developmental disabilities. Through the SPRED program, Tyler participated in the Liturgy (from lighting candles to helping prepare the Altar for the Liturgy of the Eucharist) and enjoyed these opportunities.

When we transferred to Nativity of the Lord Parish in our home town of Cudahy, we immediately volunteered to be readers and have the kids become Alter Servers. There was no question in my mind that Tyler was capable of this responsibility. Tyler is non-verbal, so I knew he could not help with the readings. Serving, though? I knew he could do that with accommodations (me helping him). When I talked to the Pastor, Father Phil, he had no reservations. So they put us on the schedule.

The first Mass that we worked was Father’s Day. I couldn’t have been prouder. Here I am working Father’s Day mass with my oldest son. Tyler enjoys being an active part of the Sunday Liturgy with his brother or sister, whoever is scheduled with him. While I take for granted what Tyler can do, many are amazed. A number of families came up to us after Mass, some with tears in their eyes and told us how impressed they were with what Tyler was doing to be a part of the Parish.

Tyler is a part of his community and his Faith community is no exception. Had Tyler not been given this opportunity, I am pretty sure we would have started looking for a Parish that would have accepted our family: all five of us.

Help us get 5,000 clicks!

by Rachel Talen

I saw a commercial showing what life might look like caring for a child with special needs a while ago and thought it did a great job portraying something that can be hard to describe. Now it turns out that for each “like” the video receives, MassMutual will donate $5 (up to $25,000) to the Easter Seals Make the First Five Count® program, which promotes early identification of disabilities and developmental delays.

MassMutual is a leading mutual life insurance company and one of Easter Seals’ long-time corporate sponsors, and this is part of its recent social media campaign to raise awareness about the financial challenges faced by parents of kids with special needs.

Families of special needs children have a lot to plan for and think about. MassMutual’s SpecialCare program is the ultimate financial planning resource for families — it covers everything from how families can provide the best care for their loved ones now to how they can plan for the future. Here’s what MassMutual identifies as key elements for good financial planning:

• A team approach. Seek financial professionals who have the special needs experience and are willing to guide you through the important financial decisions that affect your entire family.
• A caregiver and a letter of intent. Identify the person who will care for your loved one and draft a letter of intent that will serve as a guide for that person to provide care, support and other assistance after you are gone.
• Long-term expenses. Plan ahead for expenses such as housing, education, work opportunities and daily transportation when determining your loved one’s lifetime financial needs.
• Availability of government benefits. Research the benefits that are provided by the federal government for families affected by special needs, you may qualify for assistance.
• A will in place. Make sure you have beneficiary arrangements and a current will that aligns with your other financial planning strategies.

MassMutual’s awesome campaign has generated some media buzz, too. An article in the Wall Street Journal leads with a story of how attending a MassMutual seminar on financial planning for children with special needs helped change the lives of the Waldrons, a SpecialCare family. MassMutual’s campaign to help Easter Seals Make the First Five Count was also mentioned on Parents magazine’s goody blog in a post called “Easing the Financial Burden for Special-Needs Families.”

When I first heard that Mass Mutual has been helping caregivers of loved ones with disabilities with financial planning for nearly a decade, I was really impressed. Now that I know they’ll donate $5 (up to $25,000) to the Easter Seals Make the First Five Count® program every time that the <a “Like MassMutual on Facebook to support Easter Seals” href=”https://www.facebook.com/massmutual/app_379100915483750″>commercial I mentioned earlier gets a “like,” well, I’m overwhelmed. Wow!

Glad they didn’t ask us to help with archery!

by Beth Finke

A blog post my colleague Patricia Wright wrote last month explained the “Outside In” employee volunteering program Easter Seals recently started. Outside In gives Easter Seals headquarters employees up to a week of on-the-clock (paid!) time to volunteer for another non-profit organization. The idea is that we’ll be exposed to and learn what’s going on “outside” of Easter Seals … and bring new ideas from the experience back “in.”

Patricia is the National Director of Autism Services here at Easter Seals, and she used her Outside In hours to work with a non-profit organization called The Five Project to help train people with autism in Shaanxi, China.

Public Relations Coordinator Rachel Talen volunteered in El Salvador with an organization called ENLACE, and she wrote a post about the special little girl she met while helping build a road for farmers to transport crops and allow kids to walk to school safely.

My Seeing Eye dog Whitney and I are going to take advantage of the program, too, but we’re sticking a bit closer to home. Through next Monday, the Rehabilitation Institute of Chicago (RIC) and the Wounded Heroes Foundation are sponsoring a sports camp in Chicago that’s specially designed for injured military personnel with physical disabilities. From the RIC Life Center web site:

Elite level coaches will teach wounded veterans a variety of sports, including sitting volleyball, archery, sled hockey, power lifting, wheelchair basketball, judo, kayaking, tennis, rowing, cycling, field, and swimming.

The crisis we face meeting the needs of our soldiers can seem overwhelming. Easter Seals is the largest provider of disability-related services to individuals with disabilities and their families, and we offer support for service members and veterans.

The sports camp seemed an appropriate place to volunteer, so I wrote the volunteer coordinator at RIC to let him know I was interested. I explained that I am blind and use a Seeing Eye dog, and warned that he might not want to enlist me to help at the archery range.

RIC wrote back with all sorts of ideas, finally settling on having us help with Food/Hydration/General Assistance. I’m looking forward to camp, especially after reading this little tidbit on the volunteer orientation information they sent out last week:

HAVE FUN! Sure, we all have a job to do, but who says we can’t have fun while doing it?! This camp is a great opportunity to show how much we appreciate those who serve our country. Feel free to mingle with the athletes and get to know them a bit.

And gee, as much as I hate to miss our weekly hour-long department meeting at work next Monday, I think somehow my dog and I will manage to have fun at camp. Let’s just hope I can stop Whitney from fetching the tennis balls and jumping into Lake Michigan to chase the kayaks.

What kids can learn from their schoolmates with disabilities

by Beth Finke

It’s August, and the kids will be back in school before you know it. You know what that means, don’t you? It’s time to take a look at our free disability awareness curriculum.

Our FRIENDS WHO CARE® program is a fun, interactive program that helps students learn how kids with disabilities go to school, make friends and play. The program teaches empathy too, helping children understand what it means and how it feels to be a young person with a disability.

The FRIENDS WHO CARE® program is sponsored by our long-time Easter Seals partner, the Friendly Ice Cream Corporation. The program helps parents and elementary school educators teach kids about people with disabilities and encourage kids to accept their classmates who have disabilities as people first, and to find ways to include everyone in school and after-school activities. Visit our Web site to learn more about FRIENDS WHO CARE and download the materials.

The best two summers of my life!

by Bob Glowacki

A lot of our Easter Seals affiliates have long traditions of offering summer camps. From overnight camp experiences to day camps, our programs give families needed respite and support so that they can continue to provide for loved ones.

In addition to touching the lives of people with disabilities and their families, the camp experience also teaches valuable life lessons to the hundreds of students and young adults working at Easter Seals camps. Today I am happy to introduce you to one of these young adults. Meet Kelly, one of our camp leaders from my alma mater, Marquette University, as she reflects on her second year as a leader here at one of our Easter Seals Southeast Wisconsin summer camps. Thanks Kelly for sharing your experiences.

The best two summers of my life

by Kelly Maffei

About a year and a half ago I began the long search for a summer job that so many of my peers at Marquette were also embarking on. I found Easter Seals Southeast Wisconsin’s site and quickly applied for a position as Camp Leader. Soon after, they set up an interview with me. The interview was unique in its structure, but I left feeling confident.

I heard back a couple weeks later with the good news: I was hired! I didn’t know it then, but it was going to get better than I’d ever imagined. A couple weeks after I was hired I got a second call from Human Resources.

“Hi Kelly, so I know we said we wanted you to work for us as a Camp Leader…”

I was nervous at this point, wondering where they were going with this.

“But we were wondering if you would like to be a Camp Site Leader for our camp at Grant.”

When I reflect about it now, my answer was quite naive.

“Um… sure, what’s the difference?”

The difference ended up being an amazing opportunity to help more people every day than I thought I was capable of doing. Instead of being the leader of a group of four to seven campers with varying disabilities, I became the leader of 65 campers ages 6 to 65, 12 Camp Leaders, five Assistant Leaders (youth from the Milwaukee area), 10 new volunteers each week, one Certified Nurse’s Assistant, and of course one Pool Maintenance Leader/Personnel. Whoa! What had I gotten into?!

I felt like I’d had plenty of leadership experience under my belt, but I was 20 years old, had no completed degree, and was slightly intimidated by this huge responsibility thrust into my lap. Through the long hours of planning and prepping for the six weeks that would change my life, my friends and family kept reassuring me that I would not have been hired for a job I couldn’t do, and in the end, they were right.

The staff at Easter Seals have a remarkable way of seeing the best in everybody and knowing how to bring it out in you. Not only do they support and enrich the lives of the people they are serving, but they do the same for everyone they hire as well. It has been an amazing experience getting to work for Easter Seals, and one day I will transition from Camp Site Leader to Speech Language Pathologist.

I really can’t think of a better job than one where everyone is always happy to see you: from campers to staff, my days are overflowing with smiles, jokes, and laughter. Thank you, Easter Seals, for believing in me the way I believe in each of my campers, staff, and volunteers. These have been the best two summers of my life.

Two words we want to hear more often: “You’re hired!”

by Katy Beh Neas

I am pleased to introduce Verna Hensley, Vice President of Public Affairs at Easter Seals Delaware and Maryland’s Eastern Shore, as a guest blogger today.

National Governors Association initiative aims to improve employment of individuals with disabilities

by Verna Hensley

“You’re hired!” Those two simple yet powerful words are delivered in businesses, plants and offices all across the country. Unfortunately, jobseekers with disabilities don’t hear those words as often as their counterparts without disabilities.

Last month, the U.S. Department of Labor found that only 20.5% of people with disabilities are in the workforce compared to 70% for people without disabilities. Think about that: only two in every 10 Americans with disabilities are in the labor force while 7 in 10 Americans without disabilities are employed. The monthly unemployed rate for individuals with disabilities consistently reports in at double the rate for people with disabilities.

These alarming statistics have motivated some powerful leaders to help. Delaware’s chief executive, Governor Jack Markell, is the new chair of the National Governors Association (NGA) — the bipartisan group that represents all 50 state governors. Earlier this month, Governor Markell announced his chair’s initiative would focus exclusively on increasing employment of people with disabilities. He and his team will develop best practices and policy options that will be shared with every governor in the country.

Top business leaders, including the head of the U.S. Chamber of Commerce, already recognize that individuals with disabilities are an “untapped resource” for employers. This new NGA effort is a win-win for businesses and jobseekers with disabilities, and all of us at Easter Seals Delaware, Easter Seals, Inc. and the entire Easter Seals national network of affiliates applaud Governor Markell and the NGA for its leadership on this very important issue.

My link to a special needs family in El Salvador

by Rachel Talen

Patricia Wright’s blog post described a trip she took to China to volunteer for The Five Project. Her volunteer work was part of Outside-In, where Easter Seals headquarters offers its employees paid time off to volunteer. I’m such a volunteer nerd that I took advantage of the Outside-In program and jumped at the chance to work in El Salvador for a week.

My group from Willow Creek Community Church partners with an organization called ENLACE. Enlace is the Spanish word for “link,” and it commits to a 10-year relationship with a local church in El Salvador. The ENLACE model is all about empowering people of rural villages to begin and maintain ownership of projects that better their community. That’s what I liked about this organization the most — they steward relationships and develop sustainable solutions for poverty.

With the guidance of ENLACE, the people identify a project and work together over a long period of time to complete it. Our group was just added labor, working alongside the people of El Progreso to build a road that will help them transport crops more easily and will allow kids to walk to school safely. We worked very hard and got very dirty, but it was so fulfilling!

While working, I met the sweetest little girl named Senia. She walked in the courtyard holding her dad’s hand, with a huge grin that never left her face. She was very shy to meet us, but warmed up quickly. I noticed she was a little slower than most of the other kids (she couldn’t keep up playing soccer) and had someone translate as I talked to her dad. It turns out Senia has a seizure disorder and ADD and needs to go to the hospital once a month for treatment. It costs $15 to get a ride into the city, and her family makes less than $2 a day. so there’s not much left over.

I learned that most kids in rural areas of El Salvador go to school until around 4th or 5th grade, but Senia doesn’t because the teachers don’t have the capacity or resources to teach her. It was so cool to tell Senia’s father about what I did for work and about the idea of inclusion — that in the U.S., kids with disabilities go to school with their peers. I felt really proud that I could connect with him on that level and offer some encouragement for Senia.

I’m so thankful to be working for an organization that allows me to volunteer. It’s something I really love to do.

Happy Birthday to the ADA!

by Beth Finke

I am pleased to introduce Donna Smith, director of training for Easter Seals Project Action, as a guest blogger today.

We’ve come a long way, baby

by Donna Smith

It’s hard to believe it’s been 22 years since the passage of the Americans with Disabilities Act! This means that 23 or 24 years ago, I was faxing (yes, faxing) information and calling grassroots advocacy groups all over the country to organize campaigns in conjunction with Justin Dart’s efforts to get this legislation passed.

I thought our blog readers might want to take a look at the information offered by the National ADA centers and take a few minutes to reflect on the changes that 22 years of civil rights legislation has accomplished. And if you’re not old enough to remember that far back (smile), you can ask someone who is!

While there is much left to do to achieve a society of equality, we’re much closer than we once were. Not too long ago I was introduced to the six-year-old daughter of a colleague who, upon meeting Farlow, said, “that dog helps you stop at streets.” I was quite blown away by her spot-on interpretation of the function of a guide dog. People typically say, “that dog helps you see,” as though she was a pair of glasses, or, “that dog takes care of you,” as though she was some kind of superdog on whom I am totally dependent.

Simple incidents such as this show the real sea change of society’s understanding of the role of disability in our lives. It is neither totally debilitating nor does it require a pedestal. It is what it is, and life goes on. We’ve come a long way baby. Happy birthday, ADA!

New name, same longstanding traditions

by Debbie Smith

On June 27, 2012,Easter Seals Work Resource Center and the publicly funded programs of the Jewish Vocational Service (JVS) announced we would combine efforts effective July 1. Now, together as Easter Seals TriState, we make up one of the region’s largest human service organizations.

A story in the Business Courier explains our combination:

The combined agency will incorporate all the services formerly offered by the two entities, including job placement, on-site employment, career readiness programs and school-to-work programs.

Our Easter Seals Work Resource Center here in Cincinnati offers job training programs for low-income people, people with disabilities and at-risk youth. Jewish Vocational Service in Blue Ash offers programs to prepare people with disabilities for jobs, as well as therapeutic social and recreation services. The JVS Cincinnati Career Network and Hilb Scholarships will continue under a new organization, JVS Career Services. Together as Easter Seals TriState, we’ll maintain services at all of our current locations and serve more than 15,000 people in Butler, Clermont, Hamilton and Warren counties.

I’m looking forward to continuing the longstanding traditions of excellent service known by both organizations. Together, we can do so much more than we ever could by ourselves and we’re positioned for greater impact in the future.

9,781 steps!

by Beth Finke

If you’re sitting on the edge of your seat waiting to hear how my life has changed since I started wearing a talking pedometer, I have one question for you: what the heck are you doing sitting down? Get up and take a walk. Or, at least, pace!

Some background here: in late June the folks here at Easter Seals Headquarters started a six-week “Walk For U, Go The Extra Mile” challenge as part of our wellness program. Every employee received a free pedometer to keep track of progress for six weeks, and those of us who meet the daily goal of 7,000 steps per day — a distance of 3.5 miles — throughout the entire six weeks will be entered into a drawing to win a six-month fitness club membership.

The human resources department here realized I wouldn’t be able to read the number of steps I’d taken each day on my own, so they ordered a special talking pedometer for me that said my results out loud.

A post on the New York Times Well blog reported that one mile of walking covers about 2,000 steps, and Americans, on average, take 5,117 steps a day. My seeing Eye dog Whitney and I were on our way to prove my theory that blind people who use guide dogs — especially those of us who live in big cities — must walk more than the average person does.

The list of requirements for people applying to train with a Seeing Eye dog says candidates need to be able to walk one or two miles a day: “Applicant must be between the ages of 16 and 75, motivated and emotionally stable, capable of walking one to two miles a day, and able to receive and implement instruction.”

In a post I published here on the Easter Seals blog in June about all this, I explained that when you live in a city you can’t simply open a sliding glass patio door to let your guide dog out. I take Whitney down the street, around the corner and to her favorite tree at least four times a day. That’s 1,000 steps per trip. My talking pedometer counted out 12,157 steps the day I walked to the drug store to pick up prescriptions, and that included a safety shortcut I take each way to cross State Street. Whitney and I walk down the subway stairs on one side, pad along under State Street and then ascend the stairs on the other side.

The first two weeks of our experiment included one week of 100-degree temperatures in Chicago, and even in that hot weather Whitney and I averaged 9,871 steps a day. My steps per day increased when temperatures cooled down the second week.

Just when I’d started planning which new equipment Whitney and I would try out when we won the free six-month fitness club membership at the end of our “Walk For U, Go The Extra Mile” challenge, I pressed the button to hear the number of steps I’d taken so far that day, and … nothing. My talking pedometer stopped talking. I shook the thing and pressed the button. Nothing. I turned it upside-down and rightside-up again. Nothing. I stuck it in a bag of rice for a day. Nothing.

Human resources offered to buy me a new talking pedometer, but I figured I’d already proven my theory about blind people. Those of us who live with guide dogs — especially those of us who live in big cities — do walk more than the average American does. And now, I have a new theory: blind people who use guide dogs — especially those of us who live in big cities — walk so many steps that a talking pedometer can’t keep up with us.