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