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

Quality Enhancement Workgroups

By Aaron Atkinson, Director of Quality Enhancement

The mission of The Arc Baltimore is to provide advocacy and high quality, life-changing supports to individuals with intellectual and developmental disabilities and their families. The Merriam Webster dictionary defines quality as: how good or bad something is; a characteristic or feature that someone or something has; something that can be noticed as a part of a person or thing; a high level of value or excellence. If you are like me, after reading Merriam Webster’s definition, you probably are left still wondering what quality really means, and what high quality supports look like.

The reality is that each and every person who is affiliated with The Arc Baltimore, whether as an employee, volunteer, board member, business associate, or supported individual, has his or her own definition of what quality means and what quality looks like. Herein lies the challenge, what measures can we take to ensure that quality is uniformly understood and applied? Just like many of life’s questions, there is no easy, one size fits all, answer.

That said, one way to consistently provide high quality supports, is to have a plan. Here at The Arc Baltimore there are numerous plans, but the one I would like to highlight is the Quality Enhancement Plan, also referred to as the QE Plan. The QE Plan has many goals, which act as waymarks, helping to guide The Arc Baltimore on its path of continuous quality improvement. One goal within the QE Plan, is to improve the quality of services by seeking the input of staff and supported individuals. To reach this goal, we created quality enhancement workgroups.

Quality Enhancement workgroups are comprised of supported individuals and direct support professionals; the facilitators of the workgroups are all direct support professionals. Currently, the Woodlawn, Dundalk, Lochridge, Towson, Seton and Homeland employment centers, as well as the Supported Employment, Project Search, and Community Living programs have active workgroups; Family Living will create a workgroup this spring. Workgroups meet each quarter, but some have chosen to meet on a monthly basis because they have found the experience so empowering and beneficial.

Workgroups discuss many topics during their meetings, including how the Individual Plan process could improve with increased involvement of direct support professionals, ways communication could improve, and the quality of sites and services. Facilitators take meeting minutes and submit them to the director of the Quality Enhancement Division. The minutes are summarized and added to the QE Plan, which is then presented to the QE Committee. The QE committee meets on a quarterly basis and membership consists of leadership staff, board members and self-advocates. The quarterly and annual QE plan results are also posted to The Arc Baltimore’s website. Additionally, the director of the Quality Enhancement Division and the facilitators meet every quarter, at which time the director of Quality Enhancement updates the facilitators on progress towards prior agenda items and discusses new agenda items.

The purpose of the workgroups is twofold. One purpose is to improve services provided by The Arc Baltimore by refining the communication between direct support professionals, supported individuals, and management. The other purpose is to empower direct support professionals and supported individuals, by providing them an additional venue where they can share their thoughts and ideas. The concept is built upon the understanding that empowered staff and supported individuals help enhance the quality of existing supports and services. This is accomplished by providing staff and supported individuals' forums to talk about the concept of quality and the opportunity to translate those discussions into action.

For more information, please feel free to contact me at aatkinson@thearcbaltimore.org. 

Snow, Minimum Wage and the Governor

By Kathleen McNally Durkin, Deputy Executive Director

 

As President of the Board of MACS (Maryland Association of Community Services), I was invited to meet with Governor O’Malley last week. We discussed many topics regarding services to children and adults with developmental disabilities (DD) in Maryland, including an increase to minimum wage and its impact on DDA services. The Governor has committed to increasing the minimum wage to $10.10 incrementally over the next three years. Should low income Marylanders make better wages?  Absolutely!

The issue for DD provider agencies like The Arc Baltimore is complex.  Currently, our staff makes more than minimum wage. Our State funding, however, is stretched severely and has increased little in recent years to cover not only wages, but increases in other agency expenses including health insurance, worker compensations insurance, vehicles, home rent, food, gasoline, etc. Agencies such as ours rely on the State to provide funding to pay employee wages. The State determines a rate which currently affords most service providers the ability to pay an average of less than $10.00 per hour. This rate must not only pay for wages for entry level positions, but also wages for long-term employees and overtime. If minimum wage is increased but the DDA funding is not proportionally increased, these vital direct support professionals will become minimum wage jobs. We can’t let that happen.

 

And so, the snow…We are in the midst of a major snowfall event (major for MD at least). I often think about the direct support professionals who work at The Arc Baltimore, and I am humbled by their dedication and hard work. Imagine supporting three women who live in a home in Towson. You work from 3 pm – 11 pm and then sleep in their home in case they need assistance at night. You wake up at 6 am and help the ladies get off to work by 8am. On a snowy day like those we encountered this week, the day centers are closed and the ladies will be home. You juggle what would have been your time off, in order to stay and support them. All three have “no unsupervised time” which is DDA speak for, you can’t leave them alone and run out to the store! The walk needs to be shoveled and the car cleared off. Groceries are limited, and you wonder, ‘does Sue have enough of her seizure meds to last the week in case you can’t get to the pharmacy?’ It’s just you. Your supervisor will call to check in, but no one else is scheduled to work. Your job is an independent one. You must make decisions quite often on the spot that are significant to the health, safety and quality of life of these women. Your family is home left to handle the storm themselves. You have dedicated your career to adults with disabilities and this is a part of what is expected.

Should these jobs be minimum wage jobs? No! We need to push the state to increase the DDA funding proportionally so that when the minimum wage goes up, so does the funding to developmental disabilities agencies to at least keep the differential that currently exists. Our staff deserves more.

Update:
On 2/11, Kathleen Durkin testified in front of the House Economic Affairs Committee on the minimum wage issue. Also testifying was Lawrence Jenkins, a direct support staff person from The Arc, who talked about the challenges and demands of his position, the skill requirements and the training required. With him was Tom Franz, one of the three men from the home who he supports in our Community Living program. Both gentlemen served as a meaningful example of the valuable work of direct support staff and why the minimum wage increase must be tied to the rate increase. Then, the three testified again before the Senate Finance Committee.