“I had a doctor finally help me with my head, and now I feel so much better. I got glasses when I needed them. I couldn’t have a job before because I was always in the hospital. Now I can get a job.” These are the words of a 36-year-old woman transformed. A woman who 8 months ago had a future restricted by near daily episodes of challenging behaviors that included episodes of head-banging and physical aggression that would last upwards to six hours at a time. But today she speaks of the future, her plans for her future. These words of optimism, self-advocacy and self-determinism do not stand alone, but rather define the story of change and renewal for individuals living at an Intermediate Care Facility (ICF) provided by Services for the Underserved (SUS).
SUS is a New York City based nonprofit human services agency who provides a wide array of services to a spectrum of individuals and families with diverse challenges including individuals with intellectual/developmental disabilities. In August of 2014, SUS was awarded a Balancing Incentives Program Innovation Fund (BIP) grant to improve quality care and management of individuals with developmental disabilities living in long-term residential settings. At the ICF, the grant provides funds for an analytical and systemic shift in administering services for adults with developmental disabilities; the application of the science of applied behavior (ABA), the benchmark in educating young children on the autism spectrum in the teaching of new skills and the decreasing of challenging behaviors. Each individual at the ICF received a full functional behavior assessment which then steered the development of an individualized service plan focused on increasing and decreasing behaviors based on the function, why an individual engaged in the behavior, rather than the topography, and what the behavior looked like. By analyzing and manipulating the motivating operations and the sustaining consequences of behaviors, behavior analysts and behavior technicians at the ICF have demonstrated success across many individuals at the residence.
Below are the stories of two individuals who currently reside at the ICF. Their stories highlight the success of the work accomplished under the BIP grant; that the application of the science of ABA to adults in a residential setting can lead to less restrictive living and a greater quality of life at any age.
Nancy is a 36 years old female who has resided in hospital and institutional placements since 2003. She has an extensive medical history as well as a long history of behavioral and psychiatric concerns dating from her first hospitalization at just 1.5 years old. Moreover, Nancy began a regiment of psychotropic medications as a toddler at 3 years old. Nancy carries multiple diagnosis and engages in severe challenging behaviors which include head banging, physical aggression, verbal aggression towards, and attempts to eat inedible objects. Past interventions to decrease challenging behaviors included being enclosed in a padded and locked time-out room, removal of personal items, and as needed medication injections. Nancy’s life did not extend past the ICF stone walls, and there was little hope in changing that.
At SUS, behavioral interventions do not include the previously used treatment protocols, such as a time-out room or as needed medications. The science of Applied Behavior Analysis guide intervention protocols to decrease challenging behaviors and increase adaptive responses. When Nancy first transitioned to our care, she complained of constant headaches and pain all over her body. She was engaging in up to 800 incidents of head banging per day and up to 500 incidents of physical aggression per day. A Functional Behavior Assessment conducted to first identify the function of the challenging behaviors. Once the function of the behaviors were identified, seeking attention, a behavioral intervention based on positive reinforcement and extinction was put in to place. By providing Nancy with ongoing, high quality attention which included allowing her to go out into the community, an immediate decrease in target behaviors began to take place. Additionally, a new person with her eyes on an unfolding future began to take form. Despite this, the physical complaints of headaches and pain failed to decrease and remained puzzling and extremely concerning to the team.
The team continued to investigate Nancy’s complaints of pain it was recommended that Nancy’s consider a surgery that would place a shunt to relieve cerebral-spinal fluid and relieve pressure from the pseudo-tumor that may be causing her headaches and dizziness. Following the surgery, Nancy’s made incredible improvements, decreasing the number of behavioral incidents by half. These decreased incidents are unprecedented in her medical history and would not have been possible without the coordination and dedication of the primary physician, and medical and behavioral team working together.
Although Nancy still engages in challenging behaviors, the tremendous decrease in daily episodes has opened up many more opportunities in her daily life. By reinforcing appropriate behaviors by providing her with high quality attention, providing access to preferred items and people, and acknowledging her medical complaints through treatment and reinforcement for accepting treatment, the team has developed positive approaches to decreasing Nancy’s challenging behaviors without resorting to punishment procedures.
Nancy hopes to live on her own, or with her boyfriend one day. This summer, due to the BIP grant’s initiative to move individuals to less restrictive settings, she will be taking the first step towards this goal. Nancy will be moving out of the SUS ICF and into an Individualized Residential Alternative, or IRA. At the IRA, Nancy will live in an apartment in the community where she, and other peers from the SUS ICF, will learn to cook, and care for themselves and their new home outside the brick walls of an institution. This is a momentous step for Nancy, but like any other woman in her 30s, if you ask her what she is most excited about, she says, “to decorate my new home, with a pink bedroom.”
Jeremy, another individual who has benefitted from his transition to SUS, remembers his life in 1980’s New York City. He often talks about his family, his girlfriends, and the mistakes he has made along the way. He reflects on how he came to live at the state developmental center but also speaks about his plans for the future.
A 56 year old male who resides at the same ICF as Nancy, Jeremy had been living in a state developmental center for approximately 28 years prior to his transition to SUS. He communicates verbally and is able to maintain conversations on a variety of topics with staff and peers. While at the Developmental Center, Jeremy had lived in a locked-down unit and had little freedom to his day. But since transitioning with SUS, Jeremy has lived on an unlocked unit, goes on community outings frequently, and will be moving into a 2 bedroom apartment later this spring.
Since Jeremy’s transition to SUS in October 2014, he has expressed an interest in purchasing DJ equipment and returning to his old “DJ roots.” He enjoys chatting with staff and peers about his favorite topic, wanting to become a DJ and old school rap and hip-hop. With assistance from the aforementioned BIP grant, SUS provided DJ classes on site so that Jeremy could familiarize himself with new technology and usher him into the 21st century. Jeremy remarked that he was surprised to see how the equipment had changed so much over the years. A few months later, SUS introduced more modern equipment to Jeremy such as iPods and iPads with small speakers and even assisted Jeremy in learning to use a computer to send and receive emails, access social media, and locate past friends and family. By utilizing Jeremy’s preferences and motivations (DJ equipment and lessons), behavior analysts working with Jeremy have documented an overall increase in appropriate socializations and compliance with staff and peers as well as a universal decrease to zero instances of any challenging behaviors.
In February of 2015, Jeremy was introduced to another individual living in an SUS IRA who was in need of a roommate. They “clicked” immediately, and instantly began making arrangements to visit with each other. They are now going to be roommates. This spring, Jeremy will be the first individual from his cohort at the ICF to make the move to less restrictive housing by moving to an IRA in the Bronx, NY. When he visited his new apartment, Jeremy said, “These rooms are pretty nice and I have a kitchen to cook in!” He then motioned to his roommate, “Don’t forget to turn the stove off and lock the doors.” Furthermore, this summer, Jeremy will begin working with The Urban Farm in NYC. He will receive hands on training and classroom teaching for 9 weeks focusing on horticulture, agriculture, and food services. Afterwards, Jeremy will have the opportunity to choose one specific field to apprentice in, and a job coach will assist him in taking his hands on training and applying it to real life work.
Jeremy is excited for his bright and promising future. He talks about earning his GED and learning to read, but above all, he is excited to live a more independent life. Nancy talks about getting a dog in her new apartment, getting a job, and one day living with her boyfriend. Both Nancy and Jeremy still have long, personalized journeys ahead of them. But through the science of ABA, by knowing what motivates each one of them to engage in a specific appropriate or inappropriate behavior, and how to respond based on function to those behaviors, behavior analysts can continue to teach, and support both of them, as they move to greater independence.
To find out more about Service for the Underserved or the Balancing Incentives Program Innovation Fund go to http://sus.org/ or http://www.health.ny.gov/health_care/medicaid/redesign/balancing_incentive_program.htm.