Up until a couple of weeks ago, Charlie had to rely on his Personal Care Attendants or UCP Case Manager to browse the web. With the help of Easter Seals, Charlie is now able to take on the web himself. Charlie's laptop has been adapted so that he can use it from his power wheelchair. The laptop sits on an articulating arm and his pointer can be controlled by a joystick that Charlie manipulates with his mouth. Last week, Charlie made his first online purchase, a thermos, just in time for the cold weather. When asked what he thought about his new laptop setup Charlie said, "It leads to my complete normal participation as a citizen in cyberspace."
Meet the inspiration for Team Stepping Stones for Stella!
Stella, a vivacious and energetic 4 ½ year old truly lives by our tagline…Life without limits… and through her family’s love, support and unstoppable drive they make it their mission to see that it happens every single day of Stella’s life. Stella has cerebral palsy.
Stella’s schedule is quite hectic as it’s filled with school, play dates, medical appointments, participating in an integrated gymnastics program with her aide, swooshing down the slopes in an adaptive ski program and playing with her sister Chloe creating unique arts and crafts activities or plays with their American Girl dolls. But Stella’s favorite activity is “hanging out at the beach” whether playing in the sand or swimming in the water. More to come on the beach!
Two years ago, Stella’s mom, Nicole reached out to UCP of MetroBoston in an effort to connect with other families who have children with disabilities; to share experiences, resources and could relate to everyday situations that impact their lives. She was driven to our organization when she read our tagline, since her personal philosophy mirrors ours. With the support of family, friends and the community, Nicole formed the ‘Walk and Roll’ Team Stepping Stones for Stella and to this day has raised thousands of dollars to support our organization. Our ‘Walk and Roll’ impacted Nicole in a way that she couldn’t imagine. While the Team was walking as a whole for Stella and individuals with disabilities, at the conclusion of the event she became a “just a parent watching the children have fun on the playground with other families who faced the same challenges that Stella does”.
Stella loves the beach but the daily summer outings are not without difficulties since pushing Stella’s wheelchair in the sand is not an easy task. Through the determination and help of her family, Stella’s grandfather who is an engineer, designed a children’s beach buggy to make the adventure of going to the beach a bit easier filled with smiles for all. See you on the beach, Stella!
For more information on Stella and her beach buggy, log on to: www.steppingstonesforstella.org.
Submitted by Ashley Pratte, MS CCC-SLP
Last month, I ventured to the Northeastern University Communication Analysis and Design Lab (Cad Lab) with Todd Kates and Shawn Ricketts. According to their website, they are “an interdisciplinary research group focused on the study of speech communication in typically developing talkers and individuals with neuromotor speech impairments; this basic science knowledge is then applied toward the design of technologies that enable, enrich, and enhance communication.” They have a lot of current projects that I think will be great in helping the communication needs of some of our clients in the future! One of the graduate students in the lab, Miriam Zisook, is interested in doing research into the social aspects of communication. Her eyes lit up when I told her we actually just started a Social Skills group at CE, so we invited her to come check it out! She decided that she’d like to start a project with some clients at CE where they design something that will represent social information that they would like conveyed to their communication partners. See sample pictures below. Here is a little more about Miriam and her project:
Ashley: Can you tell us a little bit about your graduate research thus far?
Miriam: I’m a second year phd student and I work on communication with people with disabilities. A lot of my work so far has had to do with using physiology which is different ways the body responds to stress and figuring out if we can learn from people’s emotions and behaviors from that. Now I’m trying to shift to thinking about social communication and, I think people design communication devices for really functional communication, like asking for things and saying basic needs, and not enough about social stuff. Like expressing their feelings and personality and who you are, and I want to work on involving people with disabilities in the design process. I’m hoping that means when we design stuff, it will actually reflect what people care about and want.
Ashley: Can you tell us what you’re hoping to learn from or accomplish her with us at UCP?
Miriam: Well, you have a really fun group of adults with disabilities, so I’m excited about getting involved on this side and being able to contribute to what they want these things to be, which is sort of exciting for me. I think figuring out what’s important to people and what they care about. Also, this is a place that people are being super patient with me learning how to do this so it’s a nice place to start the project, since people are so agreeable!
Ashley: Great, we’re really excited for this partnership!
The Profiles of Personal Care Settings workshop will be held at the Watertown Public Libary Wednesday, November 11, from 7pm - 8:30pm. This workshop will examine alternatives to group home and nursing home placement. Adult Family Care (AFC) and Personal Care Attendant (PCA) Management Services are different ways to provide resources, support and education to people with disabilities. These ways of meeting personal care needs enables these individuals to continuing living successfully in the community and pursuing their goals.
For more information please visit our workshop page.
United Cerebral Palsy of MetroBoston is committed to supporting its consumers in enriching their lives through new experiences in the community. John and Russell, from our residential program, took a trip to Atlantic City at the end of September. They loved staying in a hotel right near the famous boardwalk and visited the aquarium, the “Ripley’s Believe It or Not!” Museum, and several casinos to try their hand at the slot machines and blackjack tables. John said, “It was the time of my life!” and Russell is already making plans to go back!
Our annual Halloween Party was a hit! In attendance was a Bumble Bee, a Witch, a Super Hero, and many more! Everyone enjoyed tasty treats, pumpkin decorating, dancing, and bowling.
We hope everyone has a fun and safe Halloween!
For more photos please visit our Halloween Photo Album.
We are pleased to announce our schedule of events for 2014! Whether you prefer food and wine, a day on the golf course, or family fun at the zoo, there is something for everyone! Join us as we celebrate...Life without Limits!
As the date nears, please check out Events Page for more information.
Carla Guenette, Vice President of Program Services, celebrated her 20th anniversary with UCP on September 30th. Carla began working for UCP as the manager of one of the agency’s group homes. Now, in her role as vice president she is responsible for overseeing all the programs and departments that provide direct contact to individuals and families receiving supports from UCP as well as working with the agency’s various funding sources to develop new programs and to maintain the high quality of services that UCP is known for. Carla said that she has been with UCP for so many years because it’s provided her with growth opportunities and she truly loves her job. “I work with some wonderful people and I love getting to see growth in the people we support.”
When asked to tell us three things that people don’t know about her she paused and said, “That’s tough. I’ve been here so long that I don’t think I have any secrets anymore.” Here’s what she came up with… “Growing up my three favorite books were biographies of Hellen Keller and Louis Braille and a book called Wren which was about a girl with cerebral palsy so I guess it’s no surprise that I ended up working in the field of disabilities as my chosen career. I am a direct descendant of Mary Eastey and related to Rebecca Nurse, both of whom were hanged as witches during the Salem Witch Trials of 1692. I played clarinet in my high school band and can still play some even though it’s been quite a few years since high school.”
Cortiva Institute is a massage therapy school located in Watertown. Currently, Cortiva students are learning about disabilites, with a focus on cerebral palsy, and massage therapy. They will be offering free massages to people with cerebral palsy on Saturday, November 2nd, at 10:30am. At the moment, this will be only open to individuals that are able to safely self transfer onto their massage tables. Students are not yet able assist in transfers.
For more information and to RSVP, please contact David Orr at 617-361-2046.
We'd like to recognize two UCP employees who celebrated their 5th year anniversary working with UCP this month; Hermilie and Felicia. We asked them to share with us some things we didn't know about them and here's what we found out:
Hermilie enjoys quiet and peaceful places and she gets butterflies when she has to speak publicly.
Felicia loves to dance and watch movies in her spare time, organize social events in her community, and she once was crowned Miss Nigerian Airways!
Thank you to the Kippenhan family and friends for putting together such a great benefit concert! Just beCause was an amazing show made possible by a group of talented and passionate individuals.
For more photos from that evening please visit our photo album on Facebook.
Snapshots of Supported Living, part of the Profiles of Transition Workshops, will be held on October 23, 2013 at the Watertown Library from 7pm - 8:30pm.
Profiles of Transition is a monthly workshop series for parents and guardians of young adults with disabilities. This five month series will focus on strategies to transition to a more independent life at home or in the community. Meet other families and share questions, concerns, and ideas.
We had the opportunity to meet with a local author, Gail Sanfilippo, and talk to her about her autobiography, Beyond The Wheelchair. Here is Gail sharing a little bit about her life and her book.
My name is Gail Sanfilippo and I was born with Cerebral Palsy sixty years ago. Due to the fact that I was in the breach position, the doctor pulled me out with a pair of forceps to speed up the delivery. This ill-advised action caused me to have a birth defect known as Cerebral Palsy. It’s broadly defined as the lack of oxygen to the brain for four minutes or more, causing weakness or spasticity in the muscles, and sometimes mental impairment. I guess that I was one of lucky ones. This dreaded condition spared my mental state, but it took over the rest of my body as my limbs and speech, leaving me to be at the mercy of others from rising in the morning, toileting, dressing, feeding, etc. As readers go through my book, they will discover all of my triumphs and tragedies I had to overcome. Kindergarten to college I climbed mountains to obtain. Lastly, there was my freedom which came at a high price psychologically.
I grew up in a town of Everett, Massachusetts which is five miles from Boston with my parents, brother, sister, and extended family like grandparents, uncles, aunts and cousins on both of my father’s and mother’s sides. Everett was a town of Italians, Irish, English, etc. families at the time, so I tell how strong family and family values shaped my success.
My book outlines my numerous struggles for me all my life. One was education. In my early years I placed in classes with mentally disabled people, which limited my opportunities for learning and social engagement. Even in college I was told by two of my professors they did not want me taking their class, because I could not do what the so-called “normal” students. I describe how I overcame people’s expectations and got my education. Travel was a big obstacle for me wondering if where I went would be accessible or accepting. I write of my sense of adventure since a child. Many kindhearted characters helped me along the way. I traveled throughout the United States, Europe and the Caribbean. One trip took me to Rome where I actually talked to Pope Paul whom was only at hands length from me. Another adventure was on the Lord Nelson, which is a sailing vessel that was built by England for both able-bodied and the disabled persons whether physically, blind or deaf to work the boat as part of the crew for an entire for a week. My freedom came at a price… After graduation, living on my own had its own challenges. Personal Care Attendants became my biggest obstacles. Their problems became mine and I developed into a punching bag as they walked in and out of my door each day, month and year. Each of them had taken a little piece of me by stealing, lying or sexually abusing me.
As I listen to the traffic pass by my residence, I think about where they are going to or from. Like me, they all have a story to tell or convey. Although, I’m at peace with myself living with my life partner, residing on the outskirts of Boston and surviving each day as it comes with the knowledge that I have made it. I have truly made it...
To learn more about Gail, please visit her website http://www.beyondthewheelchair.com/
When I'm sailing I feel nothing but freedom. It's like I'm not even in my wheelchair anymore. This proves that if someone wants to do something they actually have the ability to do so despite having a disability!
For more photos of Phil sailing, please visit our Facebook photo album. https://www.facebook.com/media/set/?set=a.570646729668376.1073741846.262532600479792&type=3
Just beCAUSE is a family friendly concert to benefit United Cerebral Palsy of MetroBoston. There will be songs from musical theatre, classic standards, pop songs, rock songs….you’ll laugh, you'll cry, you'll cheer!
The concert will be held on September 14, 2013 at 7:30pm at The Company Theatre Center for the Arts in Norwell, MA. Tickets for this benefit concert will be $20 per person. Please call (781)871-2787 for more information. Hope to see you there!
Check out who will be performing that night: Paul Brennan, James Jackson, Christine Joyce, John King, George Kippenhan, Michelle Kippenhan, Emilee Leahy, Paula Markowitz, Joyce McPhee, Mary Beth Murphy, John Porcaro, Letitia Riel, Jessy Rowe, Melissa Sepulveda, Steve Shannon, and Jim Sullivan
This month we'd like to recognize Sheryl Wasserman's, Vice President of Development, Marketing, and Communications, 10-year anniversary with UCP of MetroBoston!
This is a photo of 2-year-old Sheri with her father. How well do you know Sheri?
3 things you didn't know about Sheri:
Shirley Huang is a graduate student at Boston University (BU) earning her Master’s degree in Speech, Language and Hearing sciences. Her clinical experience includes working with the school-age population, and adults with cerebral palsy and other developmental disabilities. Speaking Cantonese and French, Shirley is highly interested in conducting bilingual therapy treatments. While working with the clients at the United Cerebral Palsy program, Shirley became fascinated with Alternative Augmentative Communication (AAC) devices. She hopes to someday bridge the work of clinicians and engineers to improve clients’ communication skills with AAC devices. Shirley also conducts research at the BU Child Language Laboratory studying the effects of sleep on early word learning. In her spare time, she enjoys running on the Esplanade, visiting art museums, and reading books by Oliver Sacks.
This year's annual UCP picnic was a success! We had beautiful weather, great food, and friendly people. Head over to our Facebook photo gallery to see photos from yesterday's picnic.
Written by: Ron White
One of the great things about working for UCP of MetroBoston is being given the opportunity for professional advancement through attending interactive workshops. One such opportunity was presented to several employees throughout the agency in April of 2013.
The Department of Developmental Services (DDS) attracted a charismatic speaker to its Danvers office on April 5th. His name is David Hingsburger and his workshop was a day-long lecture focused on problematic sexual behavior, understanding problem behavior, and preventing abuse, especially as these topics relate to people with intellectual and developmental disabilities.
David (“Call me Dave”) is a Canadian and although his stories are drawn from mainly Canadian experiences there is a common theme that we all could relate to as well from our own experiences as advocates for disabled individuals. Dave is a large man. He used the term, “fat,” when describing himself and his obesity has him wheelchair-bound so he has a first-hand perspective when it comes to being verbally abused throughout his life. He has been able to turn those experiences into a career devoted to helping individuals with disabilities learn to rise above society’s indifference to make their lives as meaningful as they will allow. The core of this lecture seemed to be a recurrent theme that without solid relationships it is so hard for disabled individuals to reach their personal best. He used an example of when he was asked to play Santa Claus at an institution he worked at in Ontario to stress the loneliness of people who have been marginalized by society, at large, and their families in particular. When the people who didn’t go home for Christmas were brought up to him and he asked, “What do you want for Christmas?” the majority of those institutionalized people said, “I want my family…I want to go home…” They felt abandoned, and this experience left a lasting impression on Dave that drives his work on behalf of the disabled. He told us to ask this question of ourselves; “Does my work resemble being able to grant wishes to disenfranchised individuals?” I think it is fair to say that every single employee at UCP could answer, “Yes,” to that question. The activities of daily living that come automatically for us are the most basic way we grant wishes for the individuals we serve. When we help someone brush their teeth, shave, or clip their nails we are building important relationships that the individuals value beyond words. They let you know how much your work means every time you are thanked by them. Dave said, “Relationships elevate us,” and we at UCP develop relationships with the consumers that transcend just doing a job.
Think of how happy you made one of the consumers when you took him to a movie, when you accompanied her up the street to buy a newspaper, or when you went to Foxwoods as a group! Trial and error is a big part of advocating for disenfranchised individuals. Dave used the example of a high school girl that he was assigned to help lose weight. His initial goal was to use a can of diet Coke as a reinforcer for every week that she lost weight. It didn’t work. Dave learned about her feelings and discovered that she felt completely alone in her world so he revised the goal to focus on her self-esteem rather than losing weight. With the new focus she thrived, made some new friends, and began losing weight. At her graduation she told him, “Dave, I want to help people the way you do.” She got a job at a nursing home and although she felt like an outcast she stuck with it and was so pleased to tell him later on that, “a nurse said ‘Hi’ to me today!” She claimed her position in a hostile environment.
That is what relationships do; they make people claim us. Dave used an example of how people who are disenfranchised will go to great lengths to make a connection.
We, as advocates for the special needs consumers we serve, often look for ways to fix situations expecting that what we see is what we fix, unaware of the depths of feelings that the special needs individual is struggling, or unable to express. Hingsburger says that there are so many communities that it is inevitable that no matter how hard you try to integrate disabled people there will always be a segment of the community that resists integration. He also suggests that we need to start creating a culture of safety in which disabled individuals give the main input, and we teach them, “that you are safe.” It is within that safe environment that Hingsburger states, “When people with disabilities have interests and focus, they will learn.”
I believe UCP does a tremendous job creating those safe environments for people with disabilities and they also appreciate the opportunities that spring from being in a solid relationship with UCP. From day programs to ISP goals the individuals served by UCP have so many ways to make their wishes come true. We can all feel good about that.
Those of us who attended the workshop received a certificate of attendance from the DDS Northeast Region Occupational Therapy Department good for 6 Contact Hours as a testimony to the investment UCP makes into its employees. It is through workshops like this that employees gain new knowledge about the field of human services while being able to apply their own experiences that may serve them in situations that may arise. Dave Hingsburger truly had a large audience wrapped around his finger because he was able to express his opinions in a powerful but sensitive way that challenged us to do our best to “grant wishes” to those who really need them.
William shares with us how UCP has helped him achieve independence.
"UCP helps when I need it."
(Good-bye nursing home; hello independence!)