This article first appeared in the St. Louis Beacon, Feb. 28, 2010 - Jeanie Raybuck, 18, has a lot in common with others on the cusp of adulthood. She enjoys music, pizza and long walks. Recently, she tried parasailing during a family vacation -- and loved it.
Now living in her own house, away from her parents, Raybuck is learning to cook and do laundry and is thriving in her newfound independence. But in many ways, Raybuck's needs differ greatly from those of other young adults. She has autism and requires round-the-clock care.
Raybuck's condition also demands that her world be extremely structured and consistent. With one older and one younger brother, their friends and numerous activities, maintaining enough sameness was impossible in the family's Brentwood household. Before the mid-1960s, families like the Raybucks had only two choices. They could keep their autistic child at home in a less-than-ideal situation or place him or her into an institution.
With help from Life Skills, a local organization funded by the United Way, and federal and state governments, the Raybucks had another option for their daughter: a home of her own with caretakers present day in and day out.
"This was a step we thought very carefully about, and Life Skills helped make it work," Joe Raybuck said.
A Home Of Her Own
Autism is just one kind of developmental disability, defined as a condition that begins in childhood, persists into adulthood and limits a person's ability to live independently. Down syndrome, learning disabilities, cerebral palsy, epilepsy, head injuries and conditions stemming from unspecified causes are other types.
The autism continuum ranges from mild, such as Asperger's syndrome, to more severe cases like Raybuck's. Everyone with autism is different, but the disability usually entails sensory issues, a great need for order and language difficulties.
Although Raybuck has excellent receptive language -- she understands everything she hears -- her expressive language is limited to two-to-three-word sentences. As she grew into adolescence, frustration over communication, compounded by her sensory needs, led her to biting herself as well as her teachers, caregivers and family members.
"We were all walking on pins and needles from time to time because we didn't want to do anything that would upset Jeanie because that tended to bring out some aggressions," her father explained.
Until recently, the Raybucks footed most of the bill for their daughter's care. In 2005, Life Skills began providing the Raybucks with caregivers at no cost to the family. To ensure their daughter got the consistency she needed, the agency even hired the private caregivers who were already working with her.
A few years later, the Raybucks began looking for a house to buy for their daughter. At the same time, Life Skills and Raybuck's Special School District teachers began helping her with the transition away from her family. The Raybucks bought and furnished a house in University City, about 15 minutes from their home, and in May 2008, daughter Jeanie moved in.
Until she has a roommate with similar needs, she qualifies for caregivers only five days a week. She spends Thursdays and Fridays at her parents' house, a situation that has helped smooth the transition.
With the exception of a $450 a month Social Security check, the Raybucks pay for all her living expenses. But what about families of children like Raybuck who aren't able to buy a home?
Life Skills helps clients find homes or apartments and to locate the resources with which to pay for rent and other expenses. Available money doesn't allow for luxuries, but it covers the basics, according to Life Skills president Wendy Sullivan.
"They live month to month, but our staff members are good at stretching those resources," Sullivan said.
Some clients don't qualify for housing help but need a small amount of support to live independently.
"For Jeanie, it's 24/7 -- a pretty intensive 24/7 -- but for someone else, it could be they need someone to come by once a week and help pay bills, go through the mail and be available for emergencies," Sullivan said.
Life With Raybuck
Against a soundtrack of Raybuck's frequent, clear-toned singing, caregivers rotate in and out of her three-bedroom home. During the afternoon the Beacon visited, Raybuck sang happily to a vaguely familiar melody.
"I understand what it is because of the tune. She's singing, 'Winnie the Pooh, willy, nilly silly old bear," said Jen Holt, who's been Jeanie's caretaker for five years. "She also loves Disney movies and the 'Sound of Music'."
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Pointing to a dry erase board, Holt outlines Raybuck's weekly schedule. Her calendar includes Special School District classes until 2 p.m. Monday through Friday. After school, she and Holt have a snack and do chores.
Every day includes an outing, whether it's an appointment with her integrated fitness personal trainer at the YMCA, shredding and making copies at the office where Holt's mother works, or taking a walk, "rain, shine, or snow," Holt said.
Having her own serene space, rather than one punctuated by the clang and clatter of an active family, has bolstered an existing intervention aimed at curbing Raybuck's biting, grabbing and other aggressive behaviors.
"We got consistent with the consequences, like she would not be able to go out for dinner. We also made everything else more structured for her in her life," Holt said. "She's had some major aggression with me in the past, but for three years she has not had any aggression at all with anybody. She's really come a long way and I'm very proud of her."
"What Jen has been able to do with Jeanie is establish a relationship. She knows when to push and when to back off," Sullivan said.
Uncertain Economic Future Causes Concern
The 750 employees of Life Skills serve 1,500 clients in St. Louis, St. Louis County and St. Charles County. Over the past five years its caseload has doubled. But now, even as 5,000 people, statewide, are waiting for services, the organization is facing a possible funding crisis. Numerous cuts that would affect Life Skills are contained in state budget proposals being debated in Jefferson City.
"We're very concerned about it," said Sullivan, who's been with Life Skills for 29 years.
When proper care is not available, adults with developmental disabilities are easy targets for abuse and neglect, Sullivan said. Many end up homeless. Getting them off the streets often involves institutionalization, greatly reducing their quality of life at an increased cost to society.
"Institutional care is double what it costs to keep them in the community, so it's not even a good investment," Sullivan pointed out.
Joe Raybuck, who's on the board of Life Skills, worries about what would happen to Jeanie Raybuck and others like her if funding were to dry up. Joe Raybuck knows that lawmakers face tough choices about how to spend limited resources, and he and other Life Skills representatives want to make sure independent living resources get top priority.
"We go to Jefferson City once a year and meet-and-greet the legislators, Raybuck said. "We tell them how important Life Skills is to people like my daughter."
Nancy Fowler Larson, a freelance writer in St. Louis, writes frequently about health issues.