Vol 2 • Issue 2 • Mar 2011
Self-Determination and The Power of Choice
Often, we talk about the science and data behind the services we provide. There is no question, both are absolutely critical to achieving our mission. In order to determine the right approach for clients, we focus on evidenced-based best practices and thoughtful analysis of each case. But, throughout our 50 year history, Grafton has learned that there is something even just as critical to achieving success: the opportunity for an individual to make meaningful choices.
Each plan we develop is as unique as the client for whom it is crafted. We know that there is no set, prescribed treatment; rather each approach must be carefully tailored to the client. It is a natural progression, then, to ensure that a client’s plan of care reflects their own personal choices and preferences.
The idea of allowing clients to make their own choices seems so simple – and something that those of us without disabilities take for granted. But for individuals with developmental disabilities or psychiatric problems, meaningful choices are not always the norm. Anthony, the focus of this issue’s success story, is a prime example. As you will see, he was not always offered the opportunity to make decisions for himself. However, once in the “driver’s seat” so to speak, Anthony began to thrive.
Choice is a critical component to Grafton’s person-centered approach at all levels of service. When clients are able to exercise control over their treatment plans, their lives and their futures, their quality of life can be more effectively enhanced. The Career and Technical Education Program at Grafton, for instance, is a highly customized program in which each client is allowed to flourish based on their own choice.
There are fundamental principles that help to define and recognize best practices, which in turn generate positive outcomes and a good quality of life for individuals with co-occurring disabilities. At Grafton, we have found that simply taking some very basic steps to offer choices can improve quality outcomes:
- Offering choices to clients that are meaningful to them (in Anthony’s case, deciding which staff member he wanted to accompany him to his classes)
- Ensuring that clients play an integral part in making the decisions that impact them (again, using Anthony as an example, that meant determining the classes he wanted to take)
- Accurate Empathy: Putting yourself in a client’s position and considering how you might want to be treated
- Paying attention to how individual preferences can be incorporated in day to day activities
- Being Trauma-Informed: Asking questions on an on-going basis about what can be done to improve the quality of a client’s life relative to the life experiences that have brought him/her to where they are “now”
Anthony,* a sixteen-year-old male, was diagnosed with Fragile X Syndrome at 18 months of age. He experienced behavioral issues since his early infancy, which led to increasing problems at home. Anthony’s mother reported, “Life with Anthony at home had become unbearable.” After a psychiatric evaluation in 2007, Anthony was first transferred to Woods Services, a residential facility in Langhorne, Pennsylvania. At the family’s request to be closer to home, he was placed in Grafton in September 2008.
At initial assessment, Anthony was diagnosed with Autism, Anxiety Disorder, Attention Deficit Hyperactivity Disorder, Moderate Mental Retardation and Fragile X Syndrome. Referral behaviors prior to his placement at Grafton’s Winchester facility included physical aggression, disrobing, elopement and engaging in dangerous behaviors at home and in the car.
Anthony’s diagnosis of Fragile X Syndrome has led to problems with sensation, emotions and behaviors. Because of Fragile X Syndrome, Anthony feels a great deal of social anxiety when he is in new situations, meeting new people or engaging in new activities. In addition, he is also easily overwhelmed by sights and sounds.
One of the first things that staff had to learn about were the symptoms related to Anthony’s diagnoses. Fragile X Syndrome results from a change, or mutation, in a single gene, which can be passed from one generation to the next. The most noticeable and consistent effect of Fragile X is on intelligence. Fragile X is also associated with problems with sensation, emotion and behavior. Anthony felt a great deal of social anxiety. New situations, meeting new people or engaging in new activities were difficult for Anthony. In addition to his social anxiety, he was easily overwhelmed with sights and sounds. One of the strategies used by staff was the provision and availability of noise cancelling headphones when Anthony desired them.
A functional assessment revealed that the two main intentions of physical aggression and self-abuse were to:
- Escape from undesired demands, activities, tasks or situations; and
- Obtain or retain access to desired items or activities.
In September of 2010, Grafton redesigned the ways in which its classrooms were operated, giving clients a more hands on learning experience with a diverse range of teachers and learning environments throughout the day. Initially, Anthony had a difficult time transitioning to the newly designed educational environment. His incidents of aggression and plopping increased, and at times, they could last for a couple of hours. To combat this, staff created transition protocols to help Anthony move from one environment to the next. In order to assist Anthony with his daily schedule, Grafton staff gave him choices for what he could do and where he could go. By letting him manipulate his environment, they strived to help him have a greater control on his life and his emotions. They gave him a choice of activities to play if he made it into his homeroom on time. They let him choose what teacher and classroom he wanted to go to next. They even let him request what staff members were to accompany him throughout the day. A critical component to Anthony’s success was the opportunity to have meaningful choices within his environment. Allowing Anthony to have control over his environment led to a feeling of empowerment which in turn, led to a reduction in his anxiety and an improved quality of life. was Above all else, staff members had to learn about Anthony and his behaviors quickly and make adjustments accordingly throughout his treatment.
A carefully titrated medication regimen was another contributing factor in Anthony’s success in treatment. Anthony’s mother provided regular feedback on the effectiveness of each medication to his multidisciplinary team, who incorporated the feedback into improving his regimen. As a result of this effort the continued use of Zoloft helped stabilize his moods, making Anthony a calmer and happier individual.
The structural redesign of the classrooms to a career and technical education focus made a significant difference in maintaining Anthony’s attention span in the educational environment.
By January, Anthony’s incidents of plopping and physical aggression were significantly reduced, none lasting more than ten minutes. Throughout the process, Grafton staff members were adaptive and open to new strategies that helped Anthony cope with change and ultimately helped him learn to transition to activities without incident. When Anthony first arrived at Grafton, he would sit silently in the corner of a room. Now, he walks around with staff and peers, initiates interactions with others and responds to conversations. He has also been able to start self-transitioning himself from certain activities in the classroom. His family, who have been very involved with Grafton staff, have noticed the change as well. Anthony’s progress within the educational setting has generalized to other settings as well. As he has learned to manage his anxiety related to transitions, he is able to deal with change in a more productive manner. In a recent trip home, where Anthony usually had trouble transitioning to and getting in the car, he put his own bag in the trunk and climbed into his mother’s car without a single incident.
Anthony’s transformation can be best articulated by his mother. She recalls that when Anthony first arrived at Grafton, he had significant self-injurious behaviors, tantrums and violence towards others and property. In his mother’s words, “Anthony is now a pleasure to be around. He is calmer, happier and I thank the Grafton staff for helping me to understand and manage Anthony’s needs and behaviors.”
*Client’s name has been changed to protect his privacy
- “The Minimization of Restraint Initiative” highlighting safe, non-coercive behavior management interventions and the resulting positive outcomes for clients, families, employees and the organization—presented by Jim Gaynor, CEO and Kim Sanders, Executive Vice President & Chief Outcomes Officer in Melbourne, Australia February 7th through February 11th.
- “If Safety is Your Priority, Restraint is Not Your Option” – presented by Allyson Bateman, Education Administrator and Shamsi Sadeghzadeh, Clinical Administrator at the Autism Society of America, Central Virginia Chapter on February 11th.
- “Developing a Trauma Informed Continuum of Care”, panel discussion—presented by Kim Sanders at the 10th Northern Virginia CSA Symposium and Vendor Expo March 8th.
- “Using Residential Care to Meet a Child’s Needs”, panel discussion—presented by Scott Zeiter, Executive Vice President of Business Development and Kim Sanders at the Attorney, Guardian Ad Litem, and Practitioner Training Highlighting Child and Family Safety, Mental Health, Permanency, and Ethical Issues provided by The Alexandria Juvenile and Domestic Relations Best Practices Committee on March 9th.
- Grafton is a finalist for the first annual 2011 Virginia Healthcare Innovators Award (VAHCI) for best practices in trauma informed treatment and care. Click here for press release. http://www.grafton.org/press-releases/2011-virginia-healthcare-innovators-award.html
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