Steve Mellon, Post-Gazette JoAnn Lee chats with Beth Ferguson after helping her friend get dressed for the day in the Meadville home the two share. Lee opened her home 12 years ago to Ferguson, who has Down syndrome. Lee starts early each day so she can prepare herself, her 4-year-old son Samuel, and Ferguson. Click photo for larger image.

MEADVILLE -- JoAnn Lee invited Beth Ferguson to stay with her in 1993, and they've been a family ever since.

The two women had grown close during the year JoAnn helped Beth, who has Down syndrome, with her job washing trays for a local bakery. Eventually, JoAnn, who now works for ARC of Crawford County, realized "I couldn't be her job coach forever and I wanted to be a part of her life."

By bringing Beth into her home, JoAnn also saves Crawford County about $45,000 a year it would be spending for Beth to live in a group home. In return, JoAnn receives a $13,800 yearly stipend from the county and a portion of Beth's Social Security benefits. It works out to less than $2 an hour.

After Beth suffered a stroke last summer at age 45, though, JoAnn says county officials have responded to her requests for more financial help with their own version of a shell game.

It goes like this: Beth needs a first-floor bedroom because her stroke has caused ongoing vision and balance problems and, until recently, daily seizures. "If there's a fire, how am I going to get her out?" JoAnn asked. The bedroom would require building a small addition to the family's 50-year-old two-story farmhouse.

The county says that federal regulations allow up to $20,000 per household "if the money is available" for renovations to the existing house, but cannot pay for new construction. To get a shot at the $20,000, JoAnn must first pay someone about $12,000 to build a "shell," which the county then will help renovate.

	Steve Mellon, Post-Gazette Since her stroke in August, Beth needs JoAnn's help for simple tasks such as brushing her teeth. "I don't feel like her housemate anymore," says JoAnn. "I'm her caregiver. It's where I almost feel like her mother, where before we were friends." Click photo for larger image.

"I have to play by the rules that are written," said David Crowe, director of human services for Crawford County. "I can't be creative with government money."

The $20,000 is a limit set by Social Security, he said. To authorize it, "there has to be demonstrated need. My first obligation is to the consumer base, but I have to make sure the money is there."

It's the money argument that so offends JoAnn, who sees this as an example both of inflexible federal rules and an overly rigid interpretation of those rules.

"Their concern for Beth's health and welfare is nonexistent," she said. "Their concern is money, and here I have saved them money for years."

There's no question that JoAnn will build the addition, probably using a home equity loan. Beth needs it, so it will be done, JoAnn said. But after years of caring for Beth, JoAnn feels as if the system is taking advantage of her goodwill and caring nature.

"The county is saying, 'Because you love her so much, the burden is yours.' "

To add to the strain, JoAnn has a 4-year-old son, Sam, to take care of.

Sam's father sees the boy regularly, JoAnn said, but he does not live with JoAnn and he's on disability, so he doesn't make child support payments.

	Steve Mellon, Post-Gazette Beth helps JoAnn get dinner ready in their Meadville kitchen. Since her stroke, Beth can no longer prepare her own meals. Click photo for larger image.

Beth's brother and one of her three sisters live in Meadville, but they see Beth no more than once a month.

As singular as JoAnn's and Beth's story may sound, it's becoming more common that families who take in a disabled person face growing costs and increasing medical problems as the person ages.

As lifespans lengthen for people with disabilities, the strain on the families and the human services system grows. And as public money gets tighter, the families fear more of the burden will fall on them.

For more than a decade, JoAnn, 35, and Beth lived as best girlfriends and roommates. They shopped together, they saw shows, they occasionally even hit the bar scene.

Beth doesn't talk much, other than simple declarative statements such as "I'm happy" or, when she's feeling mischievous, "Tickle, tickle." She enjoys watching "Star Wars" and was once a member of a local Star Trek fan club. When she's unhappy, she lowers her chin until her face is nearly hidden by her blond hair; the furrowed brow and frown make words unnecessary.

"Because she's not a verbal person, we communicate in a different way. You know by the joy in her face that you've really made her happy," JoAnn said. And after JoAnn's father died, Beth was there for her, silently stroking JoAnn's hair and hugging her. "There is just an emotional connection and a bond that Beth and I have."

	Steve Mellon, Post-Gazette While JoAnn's son Sam finds a quick route down the stairs, Beth must hold the rail and brace her other hand against the wall because of the effects of her stroke. JoAnn worries that Beth could not get out of the house in time if there's a fire. Click photo for larger image.

The lives of both women changed forever the morning of Aug. 13, when Beth collapsed in a heap in the bathroom, hitting her head. During Beth's four days in the hospital, doctors determined she'd had a stroke. The news stunned JoAnn.

"I certainly never thought at age 45, we would be struggling with issues like this."

But what happened to Beth is fairly typical, JoAnn has learned. People with Down syndrome tend to suffer infirmities of aging, including dementia, earlier than most people. Even before the stroke, JoAnn said, she had noticed a slight downturn in Beth's mental acuity.

After she came home from the hospital, Beth began having seizures every morning, gradually building to a point where they would last much of the day. Her vision problems limited her depth perception. Walking the flight of stairs to her bedroom, she still has to hold the handrail with her left hand while bracing her right hand against the wall.

Beth can no longer dress herself, bathe herself, make her own lunch or do her laundry, and she can no longer be left alone. When Beth is sick -- as she was for 31 days in 2004 -- JoAnn must find someone to stay with her, even if it means paying them. As a program specialist at Crawford County ARC, JoAnn's annual salary barely scratches $20,000.

	Steve Mellon, Post-Gazette JoAn helps Beth negotiate snow-covered steps, which has become more difficult since a stroke altered Beth's sense of equilibrium. Click photo for larger image.

As if the financial struggle weren't enough, JoAnn says she's still dealing with the emotional adjustment to their new life.

"I don't feel like her housemate anymore. I'm her caregiver. It's where I almost feel like her mother, where before we were friends," JoAnn said. "I also feel a great sadness for her because she had worked so hard to be independent."

On New Year's Eve, JoAnn and Beth were at a family party, playing games and watching television as they reflected on the previous year. "I told her, 'Beth, we've got to make a deal -- no more hospitals. We're going to be healthy this year because 2004 was the bottom of the bucket.' " Beth responded with giggles.

Ten days later, Beth was back in the hospital after hours of continuous seizures left her unable to speak. At the hospital, doctors made adjustments to her medications and Beth has been seizure-free since.

But JoAnn knows, and she thinks Beth may know, too.

"I do think this is probably the beginning of a long, bumpy road ahead," JoAnn said. "The reality is she's just going to get older and the Down syndrome is not going to go away."

	Steve Mellon, Post-Gazette On a table top in JoAnn's home, pictures of Beth, taken when she was 12, share space with a photograph of JoAnn's son, Sam. Click photo for larger image.