Brain injury survivors struggle to find long-term care

By Michael Phillis/Staff Writer
February 25, 2011

Editor's note: This is Part 2 of a two-part series on brain injury.

At the age of 19, after completing his first semester of college, David Campagna developed a brain tumor. While the tumor did not take his life, it caused a brain injury impacting his short-term memory and his ability to eat.

Doctors recommended David, no longer able to live on his own, be placed in a state hospital for individuals with emotional difficulties. Not wanting to see her son in such a facility, David's mother, America Campagna, brought him home, where she cared for him for about 27 years.

But America is now almost 86 and she realized more help was needed to take care of David.

"About five years ago, we reached a stage that my husband was beginning with Alzheimer's [and] that left pretty much everything on my shoulders," said America, a Needham resident.

The family began looking into long-term residential care for David but grew discouraged by the lack of options, according to David's sister, Kathy Walsh. Some care facilities would have cost as much as $9,000 per month.

"It was next to hopeless ... because of the availability of services," said Walsh, a nurse at Beth Israel Deaconess Hospital-Needham.

Eventually, the family found what they were looking: Support Living Inc., a nonprofit organization operating three residential facilities for brain injury survivors. After five years on a waiting list, David moved into a room at the Douglas House in Lexington on March 17, 2010.

At the Douglas House, David said he feels more independent - he has his own space and can interact with others. Staff provides some rehabilitation services and a new Wellness Center is being built downstairs to test various rehabilitation processes to gauge their effectiveness.

David's struggle to secure appropriate care is common for people living with the effects of a brain injury. Gaps in insurance coverage and state programs, as well as a lack of awareness of available services, can make it difficult to arrange care.

For more, see the Feb. 24-March 2 edition of the Lexington Minuteman.
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