GKM

GKM contacted The Center on behalf of herself and her family. It is with her permission that I tell the story of this courageous family.

The first contact I had with her was in 2002. G told me that, in January 1997, the family contracted a form of influenza that left them permanently disabled. As G said, "We never got better." They had had excellent healthcare. Before this, according to G, they had been a “normal active family."

All of my contacts with G have been by phone or email, but in more recent months only email because G’s energy is low. The family numbers three: an adopted son who would now be about 17, her husband, T, and herself. D, her son, has severe cognitive problems as a result of the influenza. G and T’s conditions are slightly worse now than they were at the start. Their son is slightly better. Their illness most closely resembles Multiple Sclerosis.

At the time of our first contact (2001-2002) with G her husband was on short-term disability and her son was severely disabled. He was flourishing in school before he became ill. According to G her son has "an unbeatable love of life." She herself is a credentialed professional teacher for the handicapped, and is the most severely disabled of the three family members. T, her husband, volunteers once a month at the local library. He was able to do some driving at that time, and was able to take their son on periodic field trips. At other times he watches history programs, sitcoms, and remains "full of laughter" in spite of their situation.

Their closest relatives live in California; G and her family live on the east coast. As a result, their local church has been active in their care and has provided the necessary support system. They also have a group of "fabulous teens," some of whom volunteer, some are paid. They used to use a caregiver company for home care. As G said, their home care was and is "a patchwork," but it does seem to be working. They now have one home care worker. However, each of them must do as much as possible for themselves. (It goes without saying that I personally have found this family story to be truly inspiring.)

G contacted us at first because she was having problems with the financing of their home care. Their healthcare coverage was also in jeopardy. She could only imagine their situation worsening. She described the family as being "high middle class" before this started. She now considers them "middle - middle." Her husband could no longer work at the time of their first contact with us.

At The Center, we have a person who helps with the evaluation of family finances when healthcare decisions have to be made. I suggested to G that we gather the necessary financial data and have the information reviewed. When this was sent so promptly I knew that they were sincere in their search to stabilize the financial aspect of their situation. Her husband was insured at that time, but G was afraid they would be dropped.

The Center's financial advisor made several recommendations. In summary this family was so active doing their own local political advocacy that our job was made very easy. We were also put in touch with a particular Washington office where political healthcare advocacy is a daily task. G tracked proceedings in their state legislature with regard to an anticipated sale of their insurance company. The state did finally step in to monitor the insurance company and it still exists, and they are still covered. In early 2004 G wrote that now, "Except for the huge premiums, we're OK."

We do hold a network of resources and G was able to access this network with one call. Here we network institutions and individuals, help people as they navigate the healthcare system, encourage people to be independent. This work helps to preserve personhood in times of illness. If this effort is not made or cannot happen, human dignity is jeopardized. People can be empowered; they can be self - advocates. This family was already doing an amazing amount for themselves when they called. All we did was suggest other avenues of help.

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