Siblings Work to Reunite Mentally Retarded Family Members

Jeff Daly was a boy when his mentally retarded sister, Molly, was sent away. As an adult, he found her living in a group home and is now challenging Oregon state officials to notify clients with mental retardation when a family member is trying to make contact.

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For decades in this country, many families with mentally retarded children received some tough advice: send the child away to an institution. Those places were often far away. Many families rarely saw their children, and some never saw them again. This is the way that one Oregon family was torn apart in 1957. Colin Fogarty of Oregon Public Broadcasting reports on how two members of that family are trying to help others today.

COLIN FOGARTY reporting:

When documentary producer Jeff Daly was six years old, his three-year-old sister, Molly, disappeared from their home. Again and again, he asked his parents, `Where's Molly?' But his parents never answered. Turns out, she was sent away to a state institution for people with mental retardation. Last year, when both Daly's parents died, Jeff went inside his father's wallet and found a note bearing Molly's name, birth date and Social Security number.

Mr. JEFF DALY (Documentary Producer): Twelve hours after my dad's death, I found my sister. She was living in Hillsboro in a group home. It was wonderful, you know. It was--I was very, very nervous about it. I didn't know what to expect. It was big. It was wonderful.

FOGARTY: Since last year, Daly's discovered that his father visited Molly at the state institution, called Fairview, back in the 1950s, but the records show that the inevitable separation at the end of the visits proved too emotional.

Mr. DALY: It was hard for a child to go, `Well, why is somebody here loving me and now they're gone again?' And the--basically the doctors had to say--at Fairview to say, `You can't come back anymore.' So he was sort of forbidden from ever seeing Molly again after that.

FOGARTY: Well, that had to be devastating for her.

Mr. DALY: Imagine. Imagine. You know, it's just--when we see Molly today, you know, you realize that she's never had a phone call before. She's never gotten a letter.

FOGARTY: Institutions for people with mental retardation grew steadily from the turn of the 20th century and reached a peak population of 200,000 in 1967. The numbers have been declining ever since. Researchers estimate that for about one-third of those people, their families severed contact completely. In Oregon alone, that could be more than 1,300 people who are still alive today. Charlie Lakin studies demographic trends among people with mental retardation at the University of Minnesota.

Mr. CHARLIE LAKIN (University of Minnesota): Many families were advised just to forget about that family member, that it would be better for the family and for the individual if that contact was broken.

Ms. SUE SWENSON (Mother): I hate to say this, but in 1982 that's what the doctor told me to do.

FOGARTY: Sue Swenson says she instead decided to raise her mentally retarded son herself. She's now with a group that advocates for people with mental retardation. She says about 40,000 still live in institutions, and roughly 600,000 live in group homes. Swenson says though accurate estimates are hard to come by, she believes many remain completely cut off from their families.

Ms. SWENSON: The potential is enormous. I mean, Tony Soprano has an absent uncle, right? Think about "Rain Man." Did the Tom Cruise character know about the Dustin Hoffman character? No.

(Soundbite of vehicle)

FOGARTY: Back in Salem, Jeff Daly and his wife, Cindy, brought Molly to the state Capitol, a camera crew in tow, to document their lobbying for a new bill.

Mr. DALY: Molly Daly.

(Soundbite of camera)

Ms. MOLLY DALY (Jeff's Sister): Daly...

Mrs. CINDY DALY (Jeff's Wife): Yes, it is. Hi, Molly. Hi.

Ms. DALY: Hi.

Mrs. DALY: Hi. Hi.

Ms. DALY: Love.

Mrs. DALY: I love you, too.

Mr. DALY: Oh, you're getting more love than I got.

Mrs. DALY: I know.

FOGARTY: Jeff Daly was lucky to find key information about his sister, but many families trying to reconnect with a loved one run into a stone wall of state and federal privacy regulations, so now the family is lobbying the Oregon Legislature to allow state officials to notify clients with mental retardation when a family member is trying to make contact. The idea has the backing of the Democratic president of the Oregon Senate, Peter Courtney. He told his colleagues that his bill would close a chapter in state history.

State Senator PETER COURTNEY (Democrat, Oregon): And perhaps, oh, I don't know, in a small way bring a smile to their hearts and also allow us as a society to say, `We're OK, we understand now,' and to go forward.

FOGARTY: Courtney's bill is expected to become law in the next several months. Nationally, advocates for people with mental retardation are thrilled about what they believe is the first state program of its kind to reunite estranged family members, and they're hoping other states will follow. For NPR News, I'm Colin Fogarty in Salem, Oregon.

INSKEEP: You're listening to MORNING EDITION from NPR News.

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