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Many With Disabilities Find Choices Dwindle With Age

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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 those with disabilities — 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 disability delivery systems. “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, the state’s Gov. Pat Quinn is pushing to close some large state-run institutions serving people with disabilities 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 school for children and young adults with disabilities on Chicago’s South Side. She graduated at 21.

“My Aunt Marie was very determined,” recalled Carol Valaitis, a cousin who grew up in the apartment below the Laskeys. “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, Ill., 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.

In time, Laskey could climb stairs, dress herself and get around with a walker — all physical requirements Misericordia set as conditions for her return. Though formally cleared to leave a rehabilitation center in October, a mobility test at Misericordia did not go well. Valaitis said she was told Laskey could not return to her independent-living apartment.

Valaitis said she tried to help Laskey understand it wasn’t her fault. Laskey was hesitant to talk about it.

“They kicked me out,” she told the Tribune.

In a Feb. 3 letter to the family, Misericordia’s longtime executive director, Sister Rosemary Connelly, said Laskey did not meet criteria to return.

“She required more assistance with her mobility and activities of daily living than is available in that setting,” Connelly wrote. “I know you are aware that at times we are able to move an individual to an area that is able to meet increased needs. Unfortunately there were no openings.”

In a statement to the Tribune, Misericordia officials said the situation was “very upsetting to all of us; our residents are like family. No situation like this is taken lightly; these are very difficult decisions.”

Misericordia also said it recognizes Illinois lacks residential options for individuals with developmental disabilities. “Providers … are reluctant to expand services given the lack of appropriate funding for programs,” according to the statement. “The current state of the state of Illinois is such that resources for this very vulnerable population are not a priority.”

Misericordia offers services that range from 24-hour nursing care to assisted living to independent campus apartments and group homes. Confronted with a long waiting list, the nonprofit is in the midst of a $30 million fundraising campaign to build four new homes specifically for its aging residents. Construction is underway with a goal of opening in 2016.

Unable to return to Misericordia, Laskey remained in the rehabilitation center until her funding ran out. On Jan. 3, she was moved into the center’s nursing wing. She remained there for another three months as Valaitis searched for a home that had space. Time and again, she was told programs were at capacity.

“She (Laskey) was so vital,” said Dorothy Corbett of Hometown, Ill., another cousin who helps her. “She was so busy with activities and friends, and now she just sits on the edge of her bed and once in a while plays bingo. It’s heartbreaking.”

Waiting lists

Valaitis said Laskey was placed on the state’s waiting list for services in February. Since she was technically homeless, according to the state’s own rules, her case should have been given priority.

One of the private agencies the state pays to link families to services worked with Valaitis. But it still took several months before she was placed in a new home, a disturbing experience that experts say is likely to become more common.

Of the estimated 205,000 Illinois residents with developmental disabilities, 26,000 receive state assistance for residential care, according a 2013 report. But as those with disabilities get older and their caregivers age, demand for such housing is climbing, advocates agree.

State officials say thousands of adults with developmental disabilities increasingly are gaining more choices in housing as reforms mandated by the federal consent decree continue. Meanwhile, the governor is working toward reducing the state’s reliance on large institutions, a move many advocates argue offers a better life and is less expensive. The savings, according to state officials, will be reinvested in expanded housing opportunities.

“People ought to get to live in apartments with support if that’s what they want or need,” said Kevin Casey, director of the division of developmental disabilities within the Illinois Department of Human Services. “People ought to get to live with their families if that’s what they want or need. People ought to get to live with a friend (or other roommate) if that’s what they want or need. That’s the real goal, to give people a choice as to what their living situation is.”

Casey said Illinois has made progress. Over the past few years, 2,500 people have been moved off the waiting list and into smaller community settings or are receiving enhanced services in their home. Also, nearly 400 people have moved from state institutions to the community since January 2012.

Fourteen states, including Indiana and Michigan, no longer have state-run institutionalized care, according to the state of the states report. And some, including Wisconsin, don’t have waiting lists for disability services.

The Quinn administration has increased state spending for people with disabilities, but Illinois still is well below the national average and repeatedly ranks near the bottom of studies on how states deliver services to people with disabilities.

“I think there’s been … a commitment from the state to really improve the service system and move people into the community,” said Mary Kay Rizzolo, a University of Illinois at Chicago clinical associate professor who has studied the issue. “But other states are way ahead of us.”

A new home

Two days before Easter, Monica Laskey moved into the private Ridge Terrace program in Freeport, Ill. It is a close fit to the life Laskey knew at Misericordia.

The 16 men and women who live there are between 18 and 84 and have a wide spectrum of developmental disabilities. The facility is also within a half hour of Valaitis’ home.

Ridge Terrace follows a continuum-of-care procedure should Laskey become injured again, she said.

“She’ll recover, and, when she’s ready, she’ll get to (move back),” Valaitis said. “We’re blessed to have found a place, but we know she’s not the only one, and I don’t know that many people would have the wherewithal to jump through all these hoops.”

Valaitis helped Laskey unpack and hang her paintings on her bedroom wall. It’s a new adventure, Valaitis says to the younger cousin she read to when they were children. Now both are senior citizens.

Laskey looked around her new home and said, “It feels great.”

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Comments (6 Responses)

  1. Phil says:

    This is a very sad story and one that is all too familiar. While the person is disabled, it is not an uncommon story for the elderly in American Society. We treat our elderly like the unwanted step child. Throw them in a corner and wait for them to die. What a sad commentary on American ideals.

  2. Linda says:

    I agree. How sad that the United States does not value it’s most vulnerable. We should be at the forefront of care for our disabled and elderly, and yet we become consumed by things that don’t matter. It should be a no brainer to take care of them. The politicians pay lip service, and folks become consumed with personal wealth. Thank God for direct service providers who get paid so little to do the most important work. This country’s priorities are all wrong. We idolize sports and media figures, but neglect the most needy. I have lost many night’s sleep over what will happen to my son, as I’m sure many special needs parents do.

  3. Karen Kelly says:

    Illinois has a wonderful state operated facility for the severely disabled at Murray Center in Centralia. The state is seeking to disrupt the lives of the roughly 250 people who live there. There are not sufficient residential programs in southern Illinois that provide the same level and quality of care that these severely disabled persons need and receive at Murray Center. Of the 15 or so residents under state guardianship who have been moved from Murray Center, there are grave concerns about their well being. One former resident who was under parental guardianship was moved from a community group home to another state facility without consent of the guardian. She did not receive the intensive monitoring she needed to prevent aspiration in her sleep and died from neglect. The state will not approve construction of anything but 2-4 bed group homes that lack 24/7 nursing care and daily therapy services in the Centralia area. The small group homes to which some public guardian residents have been moved are owned by companies of questionable reputations. The governor’s “rebalancing effort” is more about balancing the state’s budget problems on the backs of the disabled than his intentions to provide a better quality of life for our loved ones.

  4. pat m says:

    Actually this is a testament to the very good care disabled citizens have received over the past generation. They are living longer and thriving. Unfortunately we all age and need more assist. Many would like to stay with their families but the family is unable to help them. Many would like to stay in apartments but they need a safer setting, which is something those of us in the field are always arguing about. There is a gap in a level of care needed. Many are too disabled to stay in group homes and need skilled care because of the medical diseases they have. The state has to recognize that they need a higher level of care because they are unable to manage their own care.

  5. Dadvocate says:

    If Director Casey truly respects individual choice, he needs to reject the recent HCBS waiver guidelines from HHS CMS unit. He should also chart a course away from the dangerous, one size fits all independent living only model called “Rebalancing” here in Illinois. That model may be cost effective for the State but only because it shifts those costs onto already overstressed families and communities. People are going to get hurt by these cuts in support. Stop forced independent living. It isn’t right for everyone and it’s not a Federal mandate. The only mandate handed down by Supreme Court in Olmstead is to end involuntary segregation.

    People choose to live in interdependent communities like Misericordia all the time and have throughout history, whether faith based, interest based, military or service based. Why should disabled citizens not share this same right? We need more Misericordia’s who can offer a continuum of care not fewer. The issue in this case is capacity,

    While deinstitutionalization initiatives are great for many who were indeed denied their civil right and stated desire to live in the community, deinstitutionalization policy is no good if it doesn’t allow people who want it, the option of congregate arrangements if they so choose. Intentional communities, small footprint campuses, agricultural communities are all consistent with the logical definition of community and function as such to their participants. Not everyone can (or wants to) live in “the” unfettered community, but everyone can live in “a” community

  6. marianne hurst says:

    What is the best state for intellectually disabled men to get into group homes with own rooms/residential apt communities where the waiting list is not long. After my passing he will have no family left which is constantly on my mind and producing anxiety disorder for both of s.

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