Thursday, March 11, 1999
Caregivers send cry for help
Conference comes days after desperate murder-suicide
BY KAREN SAMPLES
The Cincinnati Enquirer
COVINGTON — There is a ghost in the room. I can hear him in Judy Lancaster's voice. She is trying not to cry.
“I'll be truthful,” she says. “I never dreamed I'd be standing up here.”
Ms. Lancaster is a single mother with an 18-year-old, brain-damaged son. It's tough to sell real estate, raise another child and take care of this young man, who cannot walk or talk.
She could be any of us. She is a mom, and her voice breaks in the middle of her statement.
“I've taken care of him ... this is hard ... I've taken care of him all his life, but there is a point where I have to let go.”
We sit perfectly still in the banquet hall, as if the smallest movement might jar tears from our eyes.
“There is no hope, people. I've been waiting and waiting. I'm not the only one in this position. What's it going to take for people to hear?'”
I'm thinking: My God. This could be Elmer Dedden standing here. He is the ghost in the room.
Despondent over his wife's death, the Fort Wright man committed suicide on Sunday. He also killed his 40-year-old son, Dale, who had Down syndrome, police say. Mr. Dedden had cared for him all his life. Apparently, he saw no hope for Dale's future without him.
Three days later, several agencies in Northern Ken tucky met to discuss the state's dismal record of service to the developmentally disabled. The timing of the events was a coincidence.
Ms. Lancaster was one of four caregivers who shared their stories. About 100 others attended — parents, county officials, agency representatives and state legislators.
Mr. Dedden's horrific choice sat in the room with us like a specter of doom. It made optimism nearly impos sible.
The reality is this: Kentucky doesn't do enough to help families caring for developmentally disabled or mentally retarded individuals. It ranks among 10 states in a “hall of shame” designated by Arc, a national advocacy group.
As these caregivers — usually parents — get older, their bones weaken and their backs give out. They can no longer lift 200-pound sons in and out of bed. And they face the constant fear they will die first. What then for their child, who may never have advanced beyond a 2-year-old's understanding?
On Tuesday, we hear from Don Baker of Florence, whose 38-year-old daughter has been waiting 17 years to get into a group home for the disabled. She has cerebral palsy, which affects her speech, and her parents must help her eat, bathe and dress.
When Dawn had respiratory problems three years ago, “My wife and I were sleeping in shifts,” Mr. Baker says. “We looked into a nursing home at that time, because we just couldn't handle it.”
We also heard from Akrivi Katakos of Highland Heights. She teaches third grade, takes college classes and cares for her brother, Pete, 25.
Pete lives in Newport with their parents, who are in their mid-60s. His cerebral palsy keeps him in a wheelchair. He can do piecework for a small salary, however, when his father is able to lower a ramp over their apartment steps so Pete can get out. Recently, Mr. Katakos was hospitalized with pneumonia. Mrs. Katakos is weak from a series of strokes.
Akrivi, 27, comes over every night to cook, pay the bills and take care of other business. Finally, there is Don Ruwe of Fort Thomas. His son is 19 and doesn't speak. Until the age of 21, Thomas will attend a public school, but after that, he will become a “nonperson” and “fall off the end of the world,” Mr. Ruwe says.
All of this makes me wonder where our priorities have gone.
While these Kentuckians live in nearly constant states
of desperation, the state plans to spend $12 million widening 12th Street in Covington.
While some Americans live in nearly constant states of desperation, the United States sends $2 million to the United Nations for a project to get child laborers out of rug mills in Pakistan.
Fine. I wish no ill toward Pakistani children in rug mills. But honestly, how can our country justify an expense like this in the face of Elmer Dedden, Judy Lancaster and the rest?
Tuesday's discussion touched upon funding. Here's another bit of information: For every $1 from the state's general fund, the federal Medicaid program will throw in $3 to help pay for services to the developmentally disabled. This means if Kentucky spent more, it would be repaid threefold.
Four state legislators — Sens. Katie Stine and Jack Westood, Reps. Jim Callahan and Paul Marcotte — attended the meeting. Ms. Stine asked smart questions about the specifics of Kentucky's problem. Mr. Westood wondered why the state spends its budget surplus on golf courses and other pork.
After the luncheon, one agency official told me how helpless she feels when families request services she cannot provide. Sometimes, she indulges in a little sarcasm about Kentucky's priorities.
“I tell them, "Well, if your son were a horse, we could get something for him.”
It's way past time to make a change.
Karen Samples is The Enquirer's Kentucky columnist. Her column appears on Sundays and Thursdays in The Kentucky Enquirer. She can be reached at 578-5584 or by e-mail at: ksamples@enquirer.com
HARD NUMBERS
Statistics on the developmentally disabled and mentally retarded in Kentucky:
Total population of developmentally disabled: 46,444.
• Living with family caregivers: 63 percent.
• Living with spouses or in own households: 30 percent.
• Living in residential facilities: 8 percent.
Number of disabled living with family caregivers age 60 and older: 7,325.
Total state and local spending on services per $1,000 of personal income:
• Kentucky: $1.82.
• Ten Southern States: $2.12.
• National average: $3.64.
Number waiting for services provided with federal and state money: 1,197.
Number being served: 1,027.
Sources: David Braddock, Department of Disability and Human Development, University of Illinois at Chicago; Kentucky Division of Mentally Retarded/Developmentally Disabled Services.
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