Justin and his adoptive mother

One person’s journey through the years ‘miraculous’ — and costly

From the Anchorage Daily News:

Justin Scott sits at his dining room table dabbing pink frosting on a snowman sugar cookie and humming “Silent Night.” The chaos of his young niece and nephew decorating their own cookies bubbles around him.

If the 20-year-old could sing to his family maybe he would. But Justin can’t form the words to talk. His best communication is through jerky motions of American Sign Language.

There are a lot of things Justin can’t do.

Developmentally disabled and cognitively about 6 years old, Justin is an adult face of fetal alcohol syndrome. That he has made it this long still awes his adoptive parents, Allan and Cheri Scott. He was considered a “successfully resuscitated miscarriage” on his birth papers when he was born three months early with a .237 blood alcohol level — that’s three times the legal limit for an adult driver.

There are hundreds of young people like Justin in Alaska, and thousands more that don’t look as if they have suffered damage from their mothers’ drinking during pregnancy but show other telltale signs, the invisible disabilities — the poor reasoning and judgment, the hyperactive behavior, the poor coordination.

Alaska has one of the highest rates in the country of fetal alcohol syndrome and fetal alcohol spectrum disorders, an umbrella term that encompasses less severe cases than FAS…

In Alaska, 14 percent of women of childbearing age had been binge drinking within a month of a 2005 study, according to the CDCP.

The total lifetime cost of providing services to an individual with FAS is estimated at $3.1 million. That includes medical costs, therapies and residential care. In 20 years, Justin has had 22 operations.

The Scotts are assisted by the state and local charities, including the care of Catholic Social Services, which has been helping with Justin since 1987. The organization provides caregivers for Justin. With them, he swims at the Alaska Club, eats at the Village Inn and visits the Imaginarium. During the school year, caregivers spend about 15 hours a week with him. During the summer, they spend about 40.

Caring for Justin costs the nonprofit about $40,000 a year. The money to pay for the care comes from Medicaid, grants, and donations.

The story is accompanied by an audio slide show: “A mother’s love.”

This entry was posted on Wednesday, December 26th, 2007 at 9:10 am and is filed under families, fetal alcohol syndrome, funding, philanthropy. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.