From failure to community: College dropouts find new direction in L’Arche

Note: This is the first story in a series titled Where are they now? Life after L’Arche, which features the impact L’Arche Greater Washington, D.C., had on former assistants’ careers, faith, relationships, and lifestyles.

It was Lent, and Michael Carlisle was depressed. His plan to study philosophy and become a professor of Catholic sacred theology had fizzled out three years earlier. He was holding steady with a maintenance job at Cabela’s, an outdoor sports equipment retailer, but he was struggling to care much about life.

It was Lent, and L’Arche Heartland in Overland Park, Kan., was full of life. When Michael arrived at prayer night there was joyful shouting and a lot of laughter. The community had decided to forgo their usual dinner and eat only rice and beans so they could be in solidarity with L’Arche in Argentina, sending the dollars they saved on their meal to support those who had less.

Michael was there at the invitation of Fred Kaffenberger, a friend he’d met through involvement in a Catholic lay group called Communion and Liberation.

Twenty-five years earlier, Fred was in a position similar to Michael’s. His lack of motivation for studying computer science landed him on academic probation, and eventually he dropped out of college completely.

“I realized I couldn’t get the discipline and skills I needed by myself,” Fred said. “I figured if someone else was dependent on me I could do it. I could learn.”

He wrote to three different organizations inquiring about volunteer work. L’Arche was the only one that wrote back. So, knowing nothing of L’Arche’s founder Jean Vanier and with no particular knowledge or interest in disability services, he set off to be part of the community in Washington, D.C.

The year was 1988, and L’Arche’s home on Ontario Road in Adams Morgan was just five years old. In December of that year, Fred became one of the founding members of Euclid House, along with Dottie Bockstiegel, Wendy Moore, Gene Sampson, Glenn Houser, and Barbara Palmer. *

Fred celebrated his 21st birthday in L’Arche, and the trajectory of his life quickly began to change. He read voraciously during his spare time, consuming the works of such authors as Walker Percy and Flannery O’Connor. He and his housemates volunteered at the Potter’s House, a coffee shop with a service and social justice bent. They worked, prayed, and played together.

Early in 1989, Fred and other assistants traveled to Quebec for a retreat with Jean Vanier where L’Arche’s founder impressed upon him the underlying spirit of the organization.

“I didn’t have a lot of emotional intelligence,” Fred confessed. “I learned a lot about how to be with other people.” This wasn’t always easy. His housemates Gene and Glenn had spent their childhoods and their adult lives prior to L’Arche in Forest Haven, an institution with a notorious reputation where they’d had to keep their wits sharp and look out for themselves. At times, the housemates’ rougher edges caused conflict. But it was authentic, and it got Fred out of bed each day.

Growing up, Fred’s family was part of the Christian Family Movement, a Catholic network focused on family relationships and living out their faith through action. It was a strong foundation, but reflecting back Fred muses that his faith was perhaps a bit rigid.

In L’Arche, he took a closer took at the Beatitudes, eight blessings recorded as part of Jesus’ Sermon on the Mount. He’s quick to admit that many of L’Arche’s lessons took a long time to sink in (or, in the case of chore skills that would make him a better husband, never really stuck); but in L’Arche his faith was softened and deepened.

“The Beatitudes stayed with me because faith is about the love that Christ has for us that makes us free and allows us to grow,” he said. “It isn’t so much about what I do for other people, or the accomplishments that I have, but remembering that gaze on me.

After a year in L’Arche, Fred was ready to take on college again. This time, he focused on English. He completed a bachelor’s degree, then a master’s, and then a certificate in teaching. Lessons from L’Arche stuck with him when he taught at an all-girls Catholic school in the South Bronx after graduate school and in every job he’s had since.

“When someone is doing something to me or is against me, it’s because they have a great wound,” Fred said.

Now, L’Arche is back in his life in a way he never expected.

In the spring of 2014, Fred and his wife, Karen, lost their home on a short sale. Plus, Fred was looking for a better job. To say the least, it was a challenging time for their family.

Fred had visited the fledgling L’Arche Heartland community once soon after leaving D.C., but hadn’t connected since. While looking for work Fred discovered that the community was accepting applications for assistants. He thought Michael might be a good fit.

It turned out Fred was right. Michael moved in to Mercy House, one of Heartland’s five homes, in June 2014. At first, Michael thought it would just be a better job than working retail. He now sees that it’s a whole life—“a really beautiful life”—that he can imagine living for several years or more.

“I’ve learned to really care about life again,” Michael said. “Living here has forced me to live outside of myself and to enjoy life, to see the value in it, in myself, and in the people around me.”

Fred and Karen now live in the L’Arche Heartland neighborhood and are being drawn in to the community through their friendship with Michael. Fred reflects that it’s taken him a long time to see the value of community and the value of people more than accomplishments.

“But you know,” he said, “If it weren’t for failure, a lot of good stuff would never have opened up like it has.”

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The Tennessean: Last large state institution for disabled to close

The state has agreed to close a 40-year-old facility in east Tennessee for people with limited mental functioning, a move that advocates say marks a welcome end to an era of housing people with disabilities in large state-run asylums, often for the majority of their lives.

Under the plan, the Department of Intellectual and Developmental Disabilities will shutter Greene Valley Developmental Center in Greeneville by June 30, 2016, moving the remaining 96 residents into more home-like settings integrated into neighborhoods.

The plan to close Greene Valley is part of an overall agreement submitted in federal court last week. It would end a long-running lawsuit by advocates for people with disabilities, their parents and guardians, and the federal government against Tennessee over conditions in its institutions for people with intellectual disabilities, defined as possessing an IQ of 70 or less.

Those groups filed suit in 1995, after a Department of Justice investigation uncovered widespread abuses, including inadequate medical care, abusive treatment, failure to provide education and insufficient staffing at state institutions. The facilities have been under the federal court’s oversight since 1996.

A second large state-run institution, Clover Bottom Developmental Center, is scheduled to close this summer, five years behind schedule. About 20 residents still remain on that aging campus, which once housed 1,100, located near Hermitage in northeast Nashville.

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NYT: An Oasis of Care for People With Intellectual Disabilities

LOUISVILLE, Ky. — A mother needs to get her son out the door. Thick white socks cover his contorted feet, a coat drapes his twisted shoulders, a water bottle with a straw nestles in the concave of his chest, and black straps on his wheelchair secure his wrists. He is 33 years old, and she has to get him to an appointment.

“I always forget something,” the mother, Mimi Kramer, says, looking about her small, immaculate house. “Oh. A change of pants, just in case.”

Her son, Trey, has intellectual disability, autism and cerebral palsy. He was a joy as a child, she says, but with puberty came violent acts of frustration: biting himself until he bleeds, raging against sounds as faint as a fork scrape on a plate, lashing out with his muscular right arm. He nearly bit her finger off one Kentucky Derby Day when she tried to swipe away foam that he had gnawed from his wheelchair’s armrest.

“But he’ll also definitely make you smile when he’s happy,” says Ms. Kramer, 52, a slight, divorced woman who has raised her son mostly alone. “His smile will light up the room.”

For years, parents like Ms. Kramer have struggled to find compassionate health care for their adult children with profound disability, among the most medically underserved populations in the country. They are told their children are not welcome: too disruptive in the waiting room, too long in the examining room — beyond the abilities of doctors who have no experience with intellectual disability.

“It’s been really hard to find anyone to even take him,” Ms. Kramer says. “Much less the experience when you go into a waiting room with someone as challenging as Trey.”

Now, though, Ms. Kramer has a place to go. A motorized lift raises her son into her customized Ford Econoline van, where a home care aide named David Stodghill keeps some fudge cookies nearby as positive reinforcement for Mr. Kramer. Continue reading NYT: An Oasis of Care for People With Intellectual Disabilities

Two sides of disability housing debate

The debate that divides Delaware’s disability community, especially in matters of housing, has plenty of sharp edges.

Those edges have come into plain view since the federal agency that decides how to steer taxpayer support for disability services has changed the rule on how it will fund home- and community-based services.

The U.S. Center for Medicare and Medicaid Services (CMS) is increasingly steering money away from anything that looks or acts like an institution, like nursing homes, hospitals, treatment centers, and toward homes and services in community settings, with all plans centered around the persons with the disabilities.

The legal engines behind the shift are the same that have prompted systemic reforms in Delaware’s mental-health system – the 1990 Americans with Disabilities Act and the 1999 Supreme Court ruling known as Olmstead that said people with disabilities must be able to live in the most integrated setting appropriate for their needs.

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NPR: Faith Strengthens Aging Parents As They Care For Their Son

A good night’s sleep is rare for Judy and James Lee. They are on parenting duty 24/7 for their son, Justin.

Justin, who has cerebral palsy and was born missing parts of his brain, also has a seizure disorder, which has gotten worse lately. He’s often silent during his seizures, which means he has to sleep with his parents so they can tell when he needs help. Judy says caring for Justin is a lot like taking care of a newborn.

Rick and Marianne wash dishes together. She no longer remembers that he is her husband.
Loretta Jackson gently stretches the hands of her sister, Shirlene English, to aid physical rehabilitation after Shirlene’s brain aneurysm and stroke.

“You’re in that kind of survival mode those first few months, where your baby’s schedule is your schedule. And you sleep when they sleep and you eat when they eat. And all your focus and attention is on them,” she says.

Except Justin is not a baby. He just turned 16 and weighs 100 pounds. He can’t talk, he can’t walk and he’ll always require around-the-clock care. Like the estimated 17 million people in the U.S. taking care of their special-needs kids, Judy’s days largely consist of making sure Justin’s needs are met.

He receives music therapy, occupational therapy and tutoring. He also gets physical therapy, and though some may question what effect it may have, James and Judy believe it’s about giving Justin the best life they possibly can.

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WPOST: Parents build long-term house for disabled sons

By Beth Herman, Published: April 4

Andy and Jennifer Cibula spent 10 years planning and building their new home in Oakton, with two objectives: to design it so that their two young disabled sons can grow up and live there with a caregiver long after they are gone. And that it not aesthetically announce that anyone disabled lived there.

When the family moves in later this spring, the $2 million, 7,000-square-foot contemporary-style residence will feature cutting-edge technology. Joshua, 16, and David, 12, will be able to use iPads to call for Mom or to raise the blinds or to play Taylor Swift. The cabinets will be able to move up and down. Touchless faucets will compensate for dexterity issues. And the security system will alert the Cibulas if one of the boys gets up and doesn’t return to bed. Even the warm-water dog wash outdoors will be at wheelchair level for the family’s anticipated service dog.

The house will allow the boys to avoid ending up in an institution, the fate of many disabled adults.

Continue reading WPOST: Parents build long-term house for disabled sons