My Saturday Southern Sunshine

By Shane Hargest
Disabilities Advocate and Building Accessibility Reviewer

MY SATURDAY SOUTHERN SUNSHINE

I’m headed down to my sanctuary where I can be closer
to God than I can ever be.

I can laugh and be myself and nobody ever judges me.

I glance at this girl, and she comes up to me.

Her smile is angelic and affectionate as a warm summer breeze.

She’s just as pretty as she can be, and I admit I have the southern blues.

But, why do all these doctors think they know what I need, really.

All I need is a dose of my Saturday Southern Sunshine.

She just takes me away from my reality.

She puts my mangled body in the pool.

Emotions running high, I forget why I’m here as I look into her eyes.

I call her my Saturday Southern Sunshine.

We float in the water as my blues seem to go away.

I no longer have a care in the world.  

I call her my Saturday Southern Sunshine.

With a gentle voice and a southern accent, she whispers about drinking sweet tea…we laughed.

I call her my Saturday Southern Sunshine.

She puts in the walker so I can float in the water when this world seems to weigh me down.

In this water, it’s just me, a place where I may be able to connect with God and just be free.

Someday soon, I’ll stand before God and ask him to drown my wheelchair,

and watch my sorrow go down the drain, just like the man in the Bible that laid there for 38 years.

I will put these sorrows behind me.

I will be healed from my imperfections, the same way my Southern Sunshine heals me.

One day, we will jump for joy giving thanks for the perfect sunshine.

"My Saturday Southern Sunshine" is a poem written by Shane Hargest, a disabilities advocate and speaker who aims to "change people's perspective" about individuals with disabilities. In addition, Shane conduct accessibility assessments at local businesses to ensure that they provide appropriate accommodations for all people.  Shane recently chose The Arc Baltimore to provide him employment services.

Remote Support and Virtual Job Coaching

By Daphni Steffin

Director of Assistive Technology & LifePrint Management

When you think about Assistive Technology (AT), many things may come to mind. A communication device, an adapted switch, maybe even an iPad. As we start to think about the iPad, we realize that not all AT is exclusively for people with disabilities. After all…isn’t all technology in some way “assistive?”

Some of the most progressive developments in the world of AT are centered on the use of mainstream technologies in new ways. Video calling technologies such as Skype and FaceTime make it possible for people with disabilities to have real time interaction with a friend, family member, care giver, or job coach. We are exploring the value that these technologies can add to the quality of supports we are providing to people at The Arc Baltimore through some very exciting and innovative pilot projects.

Our Community Living Division is using video calling technology like Skype to provide remote support to people in their homes. In collaboration with a telesupport company called Rest Assured, we are providing a blend of remote support and in-home support services. Picture a woman living independently in her apartment. Using the latest and greatest camera and sensor technology, a telesupport provider checks in with her a few times a day to make sure she is safe, asks her if she has taken her medications, and makes sure her home is secure. The telesupport giver gets an alert if the smoke detector goes off, and can be reached at any time with the push of a button.

Our Community Employment division has launched a separate pilot project, exploring the use of FaceTime for virtual job coaching. People with disabilities working in the community with job coach supports can use their iPhone to FaceTime with their job coach. This empowers the individual to access real time job coaching even if the coach is not on site. We are excited to see how people thrive in integrated employment as in-person job coaches fade out, but are a FaceTime call away if needed.

The Arc Baltimore utilizes FaceTime technology 

for virtual job coaching in the workplace

Technology advances at a rapid rate, and The Arc Baltimore wants to be well-informed of the new benefits it provides for people with disabilities. These pilot projects demonstrate our awareness of both cutting-edge and mainstream assistive technology as well as our commitment to integrating it into our support models.

For more information about our Assistive Technology department and the services we provide to individuals receiving supports from The Arc Baltimore, please feel free to contact me at dsteffin@thearcbaltimore.org or 410-296-2272 x 5206.

What's Your Assistive Technology?

By Daphni Steffin,
Director of Assistive Technology & LifePrint Management

Technology has transformed the way we live, the way we work, the way we learn, and the way we communicate.  Many of us use Assistive Technology (AT) every day whether we have a disability or not. The alarm clock that woke you up this morning, the GPS that gets you from point A to point B, the remote that controls your television, or better yet, a cell phone that can do all of the above. Many of us don’t even think of these items as AT, but in reality these are all assistive devices that make our lives easier. And isn’t that what technology is all about?

Judith Heumann, a well-known disability rights activist once said that, "For most of us, technology makes things easier. For a person with a disability, it makes things possible."  Many people with disabilities may be unable to accomplish everyday tasks such as communicating, bathing, dressing, driving, and working without appropriate AT.

Recently, I spoke with a young man from our center in Dundalk who has used an electronic communication device for many years. I asked him what his day would be like without it...unable to use his voice. He responded with one word, “trouble.”

Whether it’s a communication device for a child who is non-verbal, or a big button telephone for a person with low vision, we believe that access to the right tools can be truly life-changing. That is why, through our AT program, we strive to enhance opportunities for individuals supported by The Arc Baltimore to improve their lives through the use of technology with increased awareness, access, and support.

Awareness of the benefits of Assistive Technology devices and resources; access to assessments, trial of devices, and funding; and support in integration of the appropriate technology into one’s life.

We often begin by thinking about what tasks a person is dependent upon another person to complete. Why does a staff or family member do it for this person? One specific example occurred in our centers at lunch time where some people were not feeding themselves. One man had difficulty holding the spoon, but a spoon with a bigger grip was really all that he needed.  Eight dollars later, he is now able to feed himself and is very proud of his newfound independence. This same man could not change the channel because the buttons on the remote control were too small. We tried out a big button simplified remote with him and he looked at me with a look of amazement and said, “I thought my TV only had one channel.” These are some low tech tools that have helped him overcome barriers to independence in his daily living. The tools are simple – but the impact is profound.

We often think of technology as futuristic – but it is a very real part of our present to embrace. As staff, family members, co-workers, or self-advocates, we all share a connection to people with intellectual and developmental disabilities. There is a world of AT with endless possibilities. Our AT Program aims to be that bridge from one world to the other.

For more information on our program, visit our Assistive Technology program site or feel free to contact me at dsteffin@thearcbaltimore.org.

Join us at our Assistive Technology Fair on May 28.

Family, Staff, a Doctor and a Determined Young Woman Bring Meaning to Pillowcases

By Mary Anne Kane Breschi, President of Maggie's Light

Last month, my daughter, Maggie Breschi (who has multiple disabilities), along with her co-worker and staff from The Arc Baltimore, delivered 75 pillowcases to her orthopedist, Dr. Shawn Standard, of the Rubin Institute at Sinai Hospital in time for his mission trip to the Dominican Republic.  About a year ago, when Dr. Standard learned of Maggie’s interest in sewing, he challenged her to make pillowcases for the children he and his colleagues would be caring for during their mission trips in 2014.  He said, “Maggie, if you’ll make the cases, I’ll provide the pillows. We’ll give them to the children who have very little, let alone a place to lay their head.” Maggie agreed.

When Maggie was born 22 years ago with developmental disabilities, our pediatrician –at the time- instructed us not to bond with her. She told us not to introduce her to her three older brothers, and not to take her home. If we did, she warned, the challenges & circumstances surrounding Maggie’s disability would destroy our family. These words were devastating. They offered no hope of a cure or positive outcome, let alone how we might obtain the resources & support we needed to make it possible to love and care for Maggie in our home – which is all we wanted to do.

Needless to say, the first days of Maggie’s life were difficult. Not only were we focused on her medical needs and identifying a diagnosis, I had already begun to think about her future. I was scared. What will it be? Will she have friends?  Will she have the opportunity to do what little girls do - play dolls, have sleepovers? Will she go to prom? As an adult, will she have opportunities? What about a job? Will her life have purpose and meaning? And, will anyone besides us love her? These were terribly difficult questions for me, difficult because I had no answers or at least none that I liked. I lived in a community that did not embrace children and adults with developmental disabilities, let alone value them. They didn’t fit. I lived in a community that thought it best to place its children with disabilities in institutions to be forgotten, so as not to be a burden to their families. I was so sad.

But no more, thanks to you…

Maggie Breschi, in her work space, at The Arc's
center in Dundalk

Yes, Maggie has cerebral palsy. She is non-ambulatory, and is fed via a G-tube. Yes, she has a cognitive delay, is non-verbal and uses a Dynavox (assistive technology) along with signs, gestures and vocalizations to communicate.  Yes, she developed a seizure disorder in her teens and had fourteen major surgeries by the time she was seventeen. And yes, she requires complete care and assistance with all that she does, but in spite of all of these challenges – she understands, cares, and loves her life. Just ask her.  She’ll tell you this and more. She loves going to The Arc Baltimore where staff (whom she loves) have created an environment tailored to her needs. They make it possible for her to sew with her friends, and to provide pillow cases to Dr. Standard, who has always treated her with the utmost respect, kindness and care. He, in turn, can brighten the lives of other children with special needs who live very far away, and who might now have a place to lay their head at night or a colorful sack with which to carry their belongings the next day.

Maggie along with Dr. Standard (far left) and her friends and staff from The Arc Baltimore

As Maggie’s parents, my husband and I thank Dr. Shawn Standard, The Arc Baltimore, Towson University’s Occupational Therapy Department & JHU’s Biomedical Engineering Students (who designed and created the adaptive switch for the sewing machine) for making it possible for our daughter to lead a life filled with opportunity, purpose and joy as she touches the lives of children and their families living in the Dominican Republic and other parts of the world. In our wildest dreams we never imagined an opportunity such as this for her that creates a community in which Maggie finds friendship, health, opportunity, a sense of purpose, meaning & joy. For all of this and more, we are eternally grateful!

With the utmost sincerity – thank you!

Mary Anne Kane Breschi

From Darkness Into Light

By Seth Burdine, Satisfaction Surveyor and Center Receptionist

My name is Seth Burdine. I am 32 years old. I was born on March 19^th, 1981 and raised in Harrisburg, Pennsylvania. I was born prematurely and after cataracts surgery, I was diagnosed as legally blind. I went to special schools from Easter Seals to public schools. I tested as mentally retarded when I did not pass my entrance test in grade school. I was put in special education classes and was made fun of because of my vision impairment.

My home life was weird. My mom was an alcoholic, and my dad left me when I was five years old. When I was twelve years old, a man in my family hurt me. I felt shame and guilt too. I felt lonely a lot and sought out friends to fill that lonely hole inside. I turned to school for comfort. I loved school because it was a place to learn and I felt happy there. They gave me large print books to read. Acting also brings me comfort and joy. I wanted to join the choir and drama class in school but my teacher said no. They did not want to adapt their program to meet my visual needs. Through the help of my math teacher, I volunteered and performed in a small community theater. She would also take me to musicals.

In 1992, I went to the Overbrook School for the Blind.  There, I got to learn about Helen Keller, participated in sports, choir and many other activities.  Then, my mother moved to Maryland in 1999, and I began attending Maryland School for the Blind. Through the help of one of my teachers, Mrs. Darden, I got a job at Golden Corral as a salad bar attendant. I graduated from the Maryland School for the Blind and did some volunteer jobs. Soon after, my mother got sick, and I went from group home to group home.

Then, in 2012, I found The Arc Baltimore.  I have various jobs. I work the telephone at their center in Woodlawn two days a week and at their center in Seton Business Park as a substitute. In addition, I shred documents and survey individuals with disabilities for The Arc Baltimore’s Satisfaction Survey. The survey allows people to rate their level of services they receive from The Arc Baltimore. 

I recently completed my GED test and found out that I successfully completely the course.  I will receive my diploma in a few weeks.  I have a girlfriend. I can independently get around in the community through Mobility services, and have my own apartment.  At The Arc Baltimore I feel that people really care about me. I feel loved and have the life I have been longing for.

I hope this will encourage others who read my life story that they too can come from darkness into light.

------------------------------------

Upon reading Seth's blog post, Jamie Costello from ABC2 News reached out to Seth.  See the full clip of Seth's interview with Jamie.

How To Benefit From Hiring An Employee With A Disability

By Doug McQuade, Assistant Executive Director of Employment Services

In honor of National Disability Employment Awareness month, The Arc Baltimore celebrated eight companies and two outstanding employees with intellectual and developmental disabilities at its Employers of Distinction reception last night. The honored companies have set an example for the entire business community by providing work opportunities for employees with disabilities and committing the time and resources needed to enable their success. This investment in employees who only want an opportunity to show their skills and work ethic is paying dividends multiple times over.

If you work for a company that would be receptive to employing a supported worker, then I would encourage you to read the following article and share it with those who make hiring decisions at your company. We need your help to open new doors to employment. The article first appeared in the Baltimore Business Journal and it details the many ways that a company would benefit from hiring an employee with a disability.

How to benefit from hiring an employee with a disability

Are you having difficulty finding skilled, hard-working and responsible employees for your business? We may have a solution.

The Arc Baltimore provides Supported Employment services to over 500 employees with intellectual and developmental disabilities at many businesses in the Greater Baltimore area – people with autism, Down syndrome, cerebral palsy or other such disabilities can be productive employees in your company. Many companies take advantage of our services and reap the benefits, including law firms, car dealerships, hospitals, restaurants, schools, manufacturers and retailers. Here are the benefits:

Job Development. A job developer meets with your company to determine your personnel needs and tailors our services accordingly. Then, they identify whose skills and preferences are a match to your vacant positions. The job developer works alongside the potential employee throughout the entire hiring process to ensure a smooth transition into employment.

Job Coaching. A job coach who is well acquainted with the employee works directly with them and familiarizes themselves with the job. They accompany the employee through orientation and provide one-on-one, on-the-job training and support until the person performs all the job tasks to the expectations of the employer. As the person increases their skills and reliably performs in their position, the job coach begins a fading process with occasional, as-needed drop-in visits. The job coach also builds relationships with direct-line supervisors and co-workers to ensure open lines of communication. If at any time there is a change in the job tasks or concerns, the job coach discreetly re-enters the work setting and begins the process again in the least disruptive way.

Diversity. By hiring employees with disabilities, your company is making a commitment to diversity. You provide an employee that is often overlooked with a potential life-long career that is both meaningful and rewarding. Your customers will acknowledge your commitment and feel better about patronizing your business.

Morale. As your current staff becomes familiar with the supported employee and values the work ethic and productivity they bring, a sense of pride and sharing develops among managers and workers alike.

Federal and State Tax Credits. Businesses who hire individuals with disabilities may be eligible for sizable federal and state tax credits. One in particular is the Work Opportunity Credit that provides eligible employers with a tax credit on the first $6,000 of first-year wages of a new employee with a disability.

Turnover Prevention. Businesses that have a high turnover rate for lower level positions can prevent the hassle of constant rehiring by taking advantage of The Arc’s services and hiring employees who are eager for the chance. Many supported employment situations last for decades in positions that otherwise experience considerable turnover.

Career Opportunity for Employee. “We define ourselves in large part by what we do in our work,” said Doug McQuade, associate executive director of employment services at The Arc Baltimore. “For some people with a disability, we defined them not by what they can do, but by what they cannot do. This is unfortunate, for these people are then deprived of an opportunity to enhance their self-image and feel as a valued member of our community.” It does not have to be this way. Your business can play a part in reversing this pattern by providing a career opportunity. You will see the change as the supported employee redefines themselves as someone who is a worker, as someone who earns a paycheck, and as someone who is respected and liked by their co-workers.

When your company needs to hire for a position, please keep in mind these benefits to hiring an employee with a disability. You will be very pleased with your decision and the employee will be grateful for the career opportunity.

A Letter From Steve Announcing The Arc Baltimore Blog

By Steve Morgan, Executive Director

Time is precious. It’s why The Arc Baltimore strives to keep all of our online communications as concise as possible. We want to convey to you the essentials of Arc news and resources along with some of the fun event pictures and success stories in a way that you can digest quickly.

At the same time, we have issues, challenges, victories, trends, and sometimes even debates that we want to share with you, but they can require more detail and data than we generally include. We also want to invite your reactions and insights on these matters – which leads me to announcing and kicking off The Arc Baltimore Blog. Here we will require a bit more time from you, our readers, but we hope to offer more depth and perspective, and this online application will give you a way to respond to or to share the post with others. I will write here on occasion, as will others from our senior management team, program leaders, and those who receive support from The Arc Baltimore.

Here’s some of what we hope to cover:

• The challenges siblings face when they assume responsibilities for the social, legal, emotional, and financial matters that their parents handled in the life of their sister or brother with disabilities.
• The roadblocks we encounter in finding more and better job opportunities for youth transitioning from school to the adult world.
• The individuals with disabilities who are happily living longer lives and who now want fulfilling retirement options.
• How assistive technology is unlocking words and other outlets for expression.
• The balance of having inclusive communities and integrated social outlets with affinity gatherings and events that may be perceived as segregated.
• What parent advocates face in the quest for the best education they can get for their children.
• And more.

We will try to not over-do the blog, but do justice to the voices in our community. Hold us accountable as we work on this and let us know what you like, what you think, and what you want.

Best regards,

Steve Morgan 
The Arc Baltimore
Executive Director