Aging Disabled Face Dwindling Options

Woman with Down syndrome symptomatic of problem with housing system

By Christy Gutowski, Chicago Tribune reporter

Monica Lanskey

Born with Down syndrome 65 years ago, Monica Laskey spent nearly half her life thriving on the campus of Misericordia, but the Chicago nonprofit told her family in October she required too much care after injuring her hip to return to her independent-living apartment.
And the charity serving people with developmental disabilities said it had no other openings for her. So for nearly six months, as a relative searched for housing, Laskey was forced to live at a rehabilitation nursing home, though she didn't need convalescent care. She spent most of her time sitting in a dark room with a gravely ill roommate.
Laskey would turn out to be one of the lucky ones. Two weeks ago, she moved into a private, 16-bed group home. Her ordeal in finding that space, though, is reflective of the challenges families are increasingly facing as they seek homes for aging loved ones with disabilities, experts say.
Many with disabilities today are outliving their parents and other caregivers, thriving well into old age. And advocates say Illinois — long at the bottom nationally in delivery of services to the disabled — is ill prepared to meet this demographic challenge.
"It's not pretty, I'm sorry to say, and Monica's story is very sad since it did not have to happen," said Allan Bergman, a Chicago-based expert on state delivery systems to the disabled. "Illinois is historically about 25 years behind the times."


At present, 22,049 children and adults with developmental disabilities are on a state waiting list for services. More than 9,000 need residential care. About 1,900 on the list are 50 and older. Though Illinois has made strides to move people off the waiting list, the demand for services is so great, the total has more than tripled in the past decade, records show.
The picture is particularly bleak for the elderly. Misericordia serves more than 600 residents with developmental disabilities and another 350 are on the nonprofit's waiting list. Twenty residents are 60 or older, and Misericordia predicts by 2020 more than 200 will be older than 50.
As Illinois struggles with such issues, Gov. Pat Quinn is pushing to close some large state-run institutions serving the disabled and transition residents into community-based homes and jobs. The impact of a federal consent decree with the state in June 2011 had a similar goal of community integration and is also forcing some positive change.
But experts say cases such as Laskey's continue to expose weaknesses in Illinois' system of caring for people with disabilities.
The worst part of her experience, Laskey told the Tribune during a recent interview in the nursing facility, was the loneliness.
"If there were different people to talk to," she said, "that would be good."

'A good life'
When she was born, shortly before Christmas 1948, Edward and Marie Laskey were advised to place their daughter in a state institution and "forget about her," according to family members.
But by age 10, Monica Laskey was attending a South Side school for children and young adults with

Down Syndrome
Prevalence 11.8 per 10,000 life Births in the USA
(CDC 1999-2003 Estimate)

disabilities. She graduated at 21.
"My Aunt Marie was very determined," recalled Carol Valaitis, a cousin who grew up in the apartment below the Laskeys in a Bridgeport two-flat. "She took very good care of Monica and made sure she went to school and learned how to read. They were each other's constant companion."

By the mid-1980s, long after Edward Laskey had died and Marie was hospitalized after a second stroke, a family friend who was a nun told the worried mother about the Catholic home Misericordia, Valaitis said.
Monica Laskey was well into her 30s when she arrived there in 1985. Her mother died two years later, leaving legal guardianship of her only child to Valaitis' parents. When they both passed, Carol Valaitis assumed responsibility, fulfilling a family promise.
At Misericordia, relatives say, Laskey flourished for nearly three decades. For the past several years, she shared an apartment with other women with "mild to moderate" disabilities in the institution's most independent residential campus housing. Laskey — who paints and loves to sew and read Nancy Drew novels — said she worked two jobs, in the on-campus laundry and cleaning classrooms at Loyola University.
"I had a lot of friends," she said.
Valaitis said their small, extended family fulfilled the required fundraising, volunteerism and staff meetings. And though she regularly brought Laskey home for holidays, vacations and monthly weekend visits, the Misericordia staff and residents in many ways also had become her family.
"It was really a good life," said Valaitis, 71, of Rockford, a retired teacher and speech pathologist.
As Laskey aged, her hearing and sight worsened, requiring bifocals and hearing aids. But the real difficulties began in August after she tripped outside a pool at a weeklong summer camp. After hip surgery, she spent about three months in rehabilitation away from Misericordia.