Choices 2020 November
November 2020
Community Options believes in the dignity of every person, and in the freedom of all people to experience the highest degree of self-determination. Embracing this philosophy, Community Options provides housing and employment supports to people with disabilities. #AllItTakes
Have you seen the news?
Community Options Enterprises opened its newest entrepreneurial business: a Daily Plan It in Wayne, New Jersey. There, individuals with disabilities will work alongside the small business owners who rent office space in the building. The opening was celebrated with a ribbon cutting ceremony on October 30th. Community Options board, staff, tenants, a program participant, and elected officials were in attendance. Read More.
Meet Your Neighbors Dear Friends of Community Options,
As we approach the Thanksgiving Holiday in the midst of a pandemic, Community Options remains grateful: for our dedicated staff, steadfast supporters, and most importantly, for the opportunity to emancipate people with disabilities from institutional settings like developmental centers, psychiatric hospitals, and nursing homes.
Today, nearly 90,000 people with disabilities live in an institution or nursing facility. At Community Options, we know that these settings are counterintuitive to the civil rights that people with disabilities and their families and allies fought tirelessly for and, through the Americans with Disabilities Act and Olmstead Decision, won.
Those of us who have visited institutions have seen first-hand that they are isolating, impersonal, and often chaotic or terrifying places where people are essentially warehoused, rather than supported toward realizing their full potential. We have also witnessed thousands of people exit an institution, move into a Community Options home, and flourish.
A resident, Joe, passed away in June from coronavirus. Joe lived the last quarter century of his life in one of our homes happily, with his roommate, Mike. Joe and Mike, however, were among the last people to exit Pennhurst Institution in Pennsylvania, which now, aptly, has been repurposed as a horror experience for thrill-seekers: a haunted asylum.
At his funeral, I talked about how Joe lived in that terrible place from the time he was a child. There, staff frequently humiliated and mistreated Joe, restraining him and taking away privileges. Joe became notorious at Pennhurst for stealing an abusive staff member’s car and parking it on train tracks, where it was demolished. In retaliation, staff held letters that Joe’s parents had written him, and denied their requests to visit.
When Joe moved into a Community Options residence, we told him about the letters and visit requests, and for the first time, he knew his parents had loved him. We too, loved Joe. We also love that we were able to give him and others like him a chance to live full lives.
We know that people with disabilities benefit from living in their community. Improvements in mental health, pallor, and communication skills are immediately apparent. We also know that people without disabilities benefit from having people with disabilities around them- statistically, workplaces see increases in productivity, innovation, and creativity. Every one of us, those with and without disabilities, have special interests, talents, and characteristics. We all deserve the dignity and opportunity to share those traits with others, as part of a community.
In honor of Thanksgiving and the spirit of neighborly love, we decided to highlight people who recently left institutions and moved into communities. By way of this newsletter, it is my pleasure and honor to introduce you to your new neighbors.
Warmest regards,
Robert Stack
President & CEO
Rachel, 20, Rockville, Maryland
At a young age, Rachel was moved from Baltimore to Boston, 400 miles away from her mother and everything she knew. The decision to place Rachel in an institutional setting was made based on a long history of abuse and the elopement, disrobing, and other inappropriate behaviors that Rachel exhibited as a result. Institutionalization did little to improve the behavior, making existing behaviors worse and leading to aggression, destruction of property and fire alarm-pulling. The institution warned Community Options that Rachel would never be safe outside an institution. When Community Options met with Rachel there, however, it was clear to us that it would be in Rachel’s best interests to move her to a community setting closer to home and use a trauma-based approach to address any behavior.
Consistency in staffing and daily schedule, sympathizing with frustrations or disruption to routines, praise of good behavior, and daily individual therapy, as well as group and family therapy sessions, have made a huge difference. We learned that Rachel enjoys being treated to a decaf coffee from Dunkin Donuts, the color bright pink, and dressing up. We are able to use these “likes” as part of a reward system, which has had a positive impact on Rachel. Rachel is also developing a closer relationship with her mother, who is very important to her and now able to be more active in Rachel’s life.
Over the last several years, Community Options has kept Rachel safe. She attends school and participates in activities. She was even awarded a certificate of achievement from school for consistently completing her assignments. Next year, Rachel will graduate from high school and she hopes to live in a Community Options home for adults. Rachel is always working on goals for improved communication and independence. She hopes to soon be able to do her own laundry, and we can’t wait to see what else she will achieve.
Ryan, 45, Ogden, Utah
Since childhood, Ryan lived in institutions. While he was staying in a facility in California, he experienced abuse. A lifetime of institutionalization and trauma led to aggressive and explosive episodes. The last institution he lived in managed these episodes by locking him in his room alone and allowing him to destroy property. When Ryan moved to a Community Options home in January, we, of course, took a different approach. We first made appointments for Ryan with medical professionals to see if there could be psychiatric or medical problems partially to blame for some of Ryan’s discomfort and frustration. Doctors found that Ryan had an intolerance for lactose, and that some psychiatric medications could be better adjusted. Changes to diet and medication, in part, helped. Staff also encouraged Ryan to focus on better communicating his wants and needs verbally. They offered regular reassurance that Ryan was safe and made it clear that they were there to support him and meet his needs. Since moving in, Ryan has made enormous strides in achieving stability, become friendly with his housemates and staff, and exploring the community. Most importantly, Ryan feels safe and as a result has stopped using physical intimidation to get what he wants from his caregivers. When he first moved in, he barely spoke. Ryan now uses full sentences because, finally, he’s certain that when he speaks, there are people around who are willing to listen and respond.
Edgardo, 60, Newton, New Jersey
From the time he became a teenager to just before his 60th birthday, Edgardo was kept in an institution. As Northern New Jersey Executive Director Tracy Mendola has said, institutions are not really a place to live, but a place where human beings are maintained. Staff there ensured that Edgardo was comfortable, changed regularly, fed, and safe. Confined to a single room with numerous other people, however, the institution was not a home. In 2019, when Edgardo moved to a Community Options residence in Newton, he was home for the first time in forty-six years.
Staff at the institution could not imagine how Edgardo could receive the level of care he needed from a community-based residence, and they worried that he would have to be returned within months. At the institution, Edgardo had a long history of injuries and hospitalizations from rolling out of bed and from tipping his wheelchair. Since moving to a home with Community Options, regular bed checks during the night, guard rails, a bed alarm and re-positioning in a bean bag chair have kept Edgardo safe and dramatically reduced accidents. Edgardo’s skin tone-- and his life-- have brightened from gray to color.
Edgardo is non-verbal and needs help with all activities of living, but that doesn’t mean he is incapable of expression. Edgardo cannot use speech to communicate his thoughts on the subject, but we see signs that his life has improved since leaving the institution. At the institution he simply stared into space. At his new home, he shows affection and responds to others. He now reaches for the hands of staff to give them a squeeze and scoops his arms up to help with changing. Staff take Edgardo on regular outings - for walks and trips to the park and county fair. His progress proves that community-based care is the most appropriate and humane setting for most, even those with major care needs. Edgardo’s life has been significantly impacted. He now has what all people need to have in order to feel as though they belong—companions, including two housemates and staff who care about him, and a real home.
Brandon, 20, Strasburg, Pennsylvania
When preparing for intake meetings with potential new residents, there is a part of each individual that our Central Pennsylvania Regional Director, Louis Esola, does his best to ignore; their behavioral history. Instead, Mr. Esola likes to meet with each person and figure out how they like to communicate, what their interests are, and what they dream of doing. Essentially, Mr. Esola strives to find out who they really are and who they might become—looking past what a piece of paper says about the worst moments of their lives.
When Mr. Esola first met Brandon, he learned that he loved being outdoors, walking, and music. Musical sensory objects calmed Brandon, but he had no access to these at the institution where he’d spent the last two years. Brandon and his parents wanted a less restrictive environment, but weren’t sure where else Brandon could live, given past incidents of elopement. Instead of focusing on how these challenges might limit Brandon, Mr. Esola worked with him and his family to figure out ways to work around them and build a successful life in the community.
Brandon was placed in a home in rural Lancaster County, which is perfect for someone who loves the outdoors. A young man Brandon’s age also lives in the home. He and Brandon love being housemates. They are affectionate with one another and care for each other’s wellbeing. The issues prevalent when Brandon was living in overly close quarters with thirty other people in a restricted treatment facility no longer exist. With his direct support professional, Sierra, Brandon enjoys taking long walks every day, and hasn’t had a problem with elopement since moving into the residence in December of 2019.
At the restricted treatment facility, mealtimes were time-limited and there was no choice of foods, which was stressful for Brandon. As a result, Brandon was underweight. When Brandon’s team worked to create a transition plan, they included plans for grocery shopping, diet and meal preparation. Since moving in, Brandon has gained fifteen pounds and his skin has cleared. Brandon takes the bus to school every day, where he’s learning skills that will help him contribute to the community after graduation. Brandon’s parents are happy to see their son and take him out to the park or to eat whenever they choose- when Brandon lived at the treatment facility they were only able to visit briefly on-site once per week. Now, Brandon and his family have freedom of choice, and the possibilities for how Brandon will live his life are endless. Community Options will continue to support Brandon’s interests and dreams. Next week, Brandon’s home will receive a special delivery-- a piano.