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It’s about people…not programs

By: Janet M. Williams, MSW, PhD

There is a revolution occurring in long-term care for people living with brain injuries and other cognitive disabilities. Individuals no longer have to go into a one-size-fits-all program. Instead, they are choosing to live at home, and services are being tailored to address their physical, cognitive and social needs within their own communities. Take Joe, for instance. After experiencing a brain injury, Joe lived for a time in a typical group home. He struggled under the home’s myriad rules, regulations and policies and became depressed. After being “kicked out” of the group home, Joe sought out the services of a local agency to help him become more self-sufficient. With the support of his parents and available local resources, he was able to start making his own decisions and regain some control over his own life. Today Joe is happy and rediscovering the joy and meaning in his life. He knows that he may always need some form of support, and when he needs a helping hand, he knows where to find it.

The revolution changes how we think about transition to the community for people with brain injuries. Transition is the car ride home. It is not learning certain skills in one setting to prove you can perform them at home. It is getting home to learn skills where you will use them.

Belief about intensity of services also shifts. Rather than taking the view that someone can only go home when she needs fewer services, the person goes home as soon as possible. If a person can’t be left alone, 24-hour support is provided at home. As a person masters certain daily skills and reaches set goals, such as going to the grocery store, working out at the gym or attending community college, the intensity of assistance, prompting and supervision is decreased. When therapists are able to observe an individual in his or her own environment, they can identify potential obstacles and help pave the road to success. What better place to learn living skills than within one’s own home and community? Progress, or lack thereof, then becomes very apparent to both the person and the therapist.

The enormous advantages to this approach are clear. Assessment is ongoing by those who are in the best position to see how the person changes over time, including the person being supported. Because goals are established based on the environment, they 8 8 don’t have to be set up in an artificial way. For example, if someone needs to prepare meals, working within a budget to purchase the food and making the trip to the grocery store have more meaning. And while the up-front costs of 24-hour support with intense therapy may be significant, having the ability to decrease services as soon as it’s clear they’re no longer needed minimizes the cost over time.

Community CLUES after brain injury offers a framework for tailoring services to a person with a brain injury in their own home and community. These guidelines can also be instructive for those providing services to individuals with other cognitive disabilities. When we create positive environments with control and choice, listen and develop goals based on what the person tells us, not on what assessments reveal, the person begins to gain confidence to master his life at home after brain injury. Additionally, care providers who understand what is happening from the perspective of the person being supported and expect that he will experience pitfalls, surprises and successes during the course of daily life, shows an empathy that goes a long way in building the trust that is needed for him to be successful. And finally, services that support individuals in making the best use of their family supports during the journey of brain injury launches them off on the marathon with the skills they will need to traverse the terrain ahead.

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