As a behavior specialist working in the home with the families of individuals with disabilities there is an exceptional opportunity to identify needs and concerns of not just our direct client, but also the family as a whole. While the primary focus is on the adult or child who needs support, it is inevitable that a professional relationship will develop with parents and siblings. If done well, a level of trust will be acquired. When this happens, you are now in the position where you can support the family and utilize that dynamic to further improve the lives of the household.
Often families of children with an intellectual disability suffer greatly in isolation from the ability to interact in community settings with other families and peers, due to the need to care for their son or daughter. When the therapist steps through the door; they represent for many the first and best chance they have to establish some normalcy in the family’s activities outside the home. Siblings often for the first time in years, find it “safe” to invite friends to come to their home to play. The parents and caregivers can breathe for a change, knowing that there is a function to behavior and that not every event needs to escalate into a full-blown melt down crisis.
When home programming begins there is typically a screening, goal-identification, and interview process with the family. During this time, the needs of the family and biggest concerns for the adult or child with disabilities is identified. Every family and person is different, and the reality sets in that the work that is done during programming sessions is only as useful as it is transferable and useful to the individual’s caretaker. While maintaining the goals for the individual client, but also considering and providing information to the families with questions and concerns about the care for their loved one, a wholly-inclusive model begins which highlights the mutual benefits of supporting the guardians as well.
For a family of siblings with an elderly mother, and a brother with severe self-injurious behavior: by supporting them in advocacy and attending meetings with support providers to report on our progress and recommendations, this is what helped them acquire the services they need. Their brother is now able to maintain his level of support and community engagement. This in turns relieves the elderly mother some of her years of concern as to what is happening to her son when she is not attending to him, and concurrently relieves the siblings of the fear of the unknown of “what’s next.” The power in ABA is the graphing of progress and the simple presentation of that information; frequently enough that families can quickly visually see if there is progress or regression.
For a family with a daughter dually-diagnosed with Schizophrenia and Intellectual Disability: assisting the parents in obtaining guardianship by explaining the paperwork, procedure and their rights, we are now able to ensure the safety of the young lady’s well-being. Their daughter will now have consistent and thorough medical care that addresses both her behavior and psychiatric conditions with a coordinated team approach that melds the best of all possible care coordination.
For an elderly couple, trying their best to provide their severely aggressive daughter with a home to live in with her family: giving them support while on doctor’s appointments and in the community where they otherwise are afraid to take her on their own. Their daughter now not only attends medical appointments and receives medical attention as needed, but also goes to the store with her parents and to the park.
For a single working mother with an adult son who is capable but is fearful for him to be out of her sight: showing her how he can independently help out in the home and complete chores that she just does not have the time in the day to get to herself. She and her son now have more time available to go out to the store together and he can make his own lunch, rather than his mother having to come home from work to make him something to eat.
These area a few real time case examples of the power of Applied Behavior Analysis (ABA) done well. Lives changed and destiny shaped. The work itself is rigorous. The rewards of seeing the changes described above are extraordinary. The task confronting us as a field now is to take what we know, and that is considerable, and foster an environment that recognizes best practices and aligns reinforcement to providers willing to step up the plate and take a swing at doing behavior programs that create accountable progress.
As professionals in the field, there are times when the need shifts by identifying that the needs of the adult or child we were brought in to help are directly related and an effect of the needs of the family. At the end of the day the families and caretakers are the ones that must maintain the improvements and live in vivo with the treatment effect. When they feel supported and understood, positive effects are highly likely on the day-to-day life and opportunities for the adult or child with disabilities we serve.
Amanda Duva, BCaBA, is a Behavior Intervention Specialist and Terry Blackwell, BCBA, is Chief Operating Officer at Services for the UnderServed Inc. For more information, contact Vivian Attanasio at vattanasio@sus.org or visit www.sus.org.
