Community Matters: The Intersection of Rehabilitation and Social Capital
Janet M. Williams, MSW, PhD
I started working at a nursing home over 30 years ago in Massachusetts. I thought I was taking a job as a social worker to work with seniors. On the first day I realized that the seniors were quickly being replaced by people with brain injuries. I vividly remember those two years and probably learned more about the brain, rehabilitation therapies and everything that can happen to someone after a brain injury than I have in the subsequent 30 years. I was fascinated by the great work of rehabilitation therapists. I learned that there are endless ways to talk about fixing people and endless ways to justify a person’s continued stay in the facility. I saw people transformed. I also learned that a vast majority of the people there just wanted to go home.
In those days there was no talk of “managed care,” Diagnostic Related Groups or case management. Insurance companies would pay for people to be there for years, not days. A variety of state Medicaid programs would also pay a much higher rate for people to be there and people came from more than 20 states for the services.
I was very serious about the “discharge planning” part of my job description and spoke to people daily about their desire to be with their family. I worked evenings and weekends to meet with families to find out what needed to happen to get people home. Much to the chagrin of some of the folks in administration, I was able to get a few people home. They were the ones with a lot of money who could afford home modifications and paid help at home.
Fast forward 30 years and the conversation remains the same. People with brain injuries have difficulty making transitions from one hospital, rehab or program to another because the system remains disjointed and highly dependent on funding to drive what is available for each person. The transition home is often as daunting as it was in the 1980s. Funding options have, however, increased and states have recognized that Medicaid is often the only long term funding option in place for people with long term needs.
While many things have changed in the funding and provision of services over the past 30 years, many things about what people with brain injuries and families want and need have stayed the same. The greatest desire of every person I have met after brain injury is to be in their own home surrounded by family and friends (Williams). Those with the greatest success with that goal have strategies in place in their own home and community that set them to be “of the community” and not simply “in the community” (Condeluci). Programs that are successful work to that end.
We have developed a model “Community CLUES” that include essential elements for success. CLUES has become an acronym in the implementation of services. Our overall goal is to implement the CLUES, make sure they are fully established, address goals developed and then set up a plan for fading services.
Some basic CLUES are necessary to make sure services being provided sustain community inclusion and don’t create dependence on service providers. The clues are to Create, Listen, Understand, Expect and Support an approach that creates a vision for success. As these clues are implemented time and again, the vision becomes clear. The person and family are in charge, with professionals and others acting as guides, coaches and consultants.
Create positive environments with control and choice.
Many of the adaptations a person needs after brain injury are environmental. Changing how a person walks, talks, or remembers is a small part of rehabilitation. Those are the issues often addressed early after a brain injury and in the hospital environment. The shift to home puts a greater focus on adapting the environment to support the person to be successful. A positive environment is one in which the necessary compensation techniques are built right into the person’s day. Adaptations may be as simple as a ramp into the person’s home if he uses a wheelchair, or more complex such as systems that provide prompts and reminders for appointments or medication schedules. A person has the opportunity to progress in walking, talking and remembering while going about his daily life at home.
Another important environmental factor is building control and choice into the person’s everyday life. Control means the person understands that she is included in all decisions. A simple code that “nothing for me without me” is enforced across all aspects of a person’s program. This includes goal setting, team meetings and staffing decisions. The person and her family choose everything from the place where the person will live, to the goals she will work on. The person also chooses who will provide her personal care attendant services. With more control and choice comes more ownership of both the process and the outcome of rehabilitation.
Listen to the consumer and develop goals based on what you hear, not on what assessments reveal.
People are motivated by what they are interested in and what they do well. Listening for these interests and strengths forms the basis for goal setting. That is, goals are based on what the person wants to accomplish, not on what the team thinks needs to happen. Assessments, then, reveal the challenges and strengths the person brings to trying to achieve the goal. For example, if a person wants to return to school, the focus is now on HOW that can be accomplished rather than on whether it can be accomplished. Goals are broken down into whatever steps help a person accomplish it. For example, a person may want to drive, instead of telling him that will never drive, driving becomes the goal. The person is not given the keys to the car; he is given the steps and skills necessary to drive. The steps include measures that look at things like driving safety and ability. This way, as each step is mastered, or not, the person receives real-life feedback on his driving ability. If the person does not pass a specific test necessary for a part of driving, he learns from real-life experience, like all of us, what he can or cannot do. Again, he learns from real-world experience what he needs to do for future success.
Understand what is happening from the person’s perspective.
All team members put themselves in the person’s shoes and ask: Are these the services I would want to receive? Is the focus on what is most important to the person receiving services? Based upon what we know about the person’s strengths and challenges, have the goals been broken down in a way that supports the person to accomplish them?
True understanding helps everyone focus on an approach that is truly person centered. It is an important way to avoid miscommunication and goes a long way to minimize what has been referred to as “behavior problems” in other arenas. A person who feels she has control over her environment, has a say in all aspects of decision making and feels understood, has far fewer behavorial challenges (Feeney).
Expect that everyday life brings pitfalls, surprises and successes.
In real life people learn by experience. And, experience is a hard teacher because she gives the test first and the lesson afterwards. Everyone is committed to knowing that they will do “whatever it takes” to support the person at home. By allowing a person to try new things within an environment that respects health and safety, the world becomes the classroom. It includes those days of uncertain performance and uneven skills. Pitfalls are a part of life and offer a chance to learn. Surprises at home are managed better when staff are present to help solve the issue on the spot rather than waiting for a team meeting at a program away from home.
The successes are great, even when it is something as seemingly small as making your own appointment with your doctor or setting up transportation yourself after a long stretch of having others do it for you.
Support the person to make the best of family supports during the marathon of brain injury.
Professionals are with a patient in the beginning sprint of rehabilitation, and families are there through the entire marathon. No matter what label you give the family, they are still the family. Labeling the family dysfunctional or insisting that they go to counseling is often counterproductive. Most families use friends and family for coping with brain injury, few seek counseling. In a practical sense, there is seldom time in the day to allot to counseling when caretaking is needed; in fact, the family may view it as a selfish indulgence. Additionally, when professionals recommend counseling to families, family members often interpret it to mean that the professional thinks there is something wrong with the family. That is not a helpful message to give a family that has already been traumatized.
The best approach is to give the person and family tools and education that will enable them to support each other over the long haul. Realize that professional services and support are a small part of life after brain injury. This includes teaching people to access resources, reach out to others in similar situations for advice and to honor their own values and instincts in advocacy.
Community CLUES after brain injury offers a framework for tailoring services to a person with a brain injury in his own home and community. By adopting an approach that creates positive environments with control and choice for the consumer and listens to the consumer to develop goals based on what you hear, not on what assessments reveal, – a person begins to have control over their own life and environment. Additionally, staff who understand what is happening from the consumer’s perspective and expects that everyday life has pitfalls, surprises and successes shows an empathy that goes a long way toward building the trust that is needed. And finally, services that support the person to make the best of family supports during the marathon of brain injury launches the person onto the marathon with the skills necessary to successfully traverse the terrain ahead.
This article first appeared in the North American Brain Injury Society journal.