For Patrick Kelly, the Carle Arbours nursing home was just “a good place to hide the car” during his frequent stops across the street at the Champaign County Real Estate Board. A 55-year-old real estate salesman at the time, Kelly still routinely clocked overtime hours and took phone calls late at night. He used to joke that the nursing home seemed like it was “a million miles away.” However, after a sudden stroke, he quickly found himself as one of its youngest residents. A feeling of isolation set in.
“I didn’t find [living in a nursing home] difficult at first because I wasn’t aware much of anything,” said Kelly. “As I got better though, I really resented it. … I said to myself, ‘Leave the nursing home for the older folks, but I want out.’”
Because most alternative long-term care options are only available to seniors age 65 or older, he languished in Carle Arbours for more than eight years until a room opened up at Prairie Winds of Urbana (pictured, right), a recently built supportive living facility.
Though Kelly is currently content with his surroundings at Prairie Winds, many more Americans will not be so lucky. According to the most recent data from the Centers for Disease Control and Prevention, slightly fewer than 175,000 of the nation’s 1.5 million nursing home residents, or 11.7%, are under age 65. Though age statistics for nursing homes are not widely available, a frequently cited analysis from the Associated Press suggests that the problem is particularly severe in Illinois. At 12,736 residents, the state ranks highest for mentally ill under age 65 living in nursing homes.
The nursing home census data provided by the Illinois Department of Public Health haven’t been updated since the end of 2006, but several Champaign County facilities have taken in large percentages of younger nursing home residents. For instance, 13 of the 71 residents at Helia Healthcare of Urbana and 21 of the 186 residents at Carle Arbours were under age 65. According to Tami Wacker, operations manager for the East Central Illinois Area Agency on Aging (EICAAA), the problem has only worsened since then, forcing her organization and others to focus exclusively on older residents.
This was not the case when Wacker first joined the agency seven years ago. “We used to advocate for anyone who was in a long-term care facility, regardless of age,” she said. However, a large influx of younger residents began to interfere with care for older residents. These younger residents face a much different set of problems that can be very costly and time-consuming for federally funded programs like Wacker’s.
She is also a regional representative of the Illinois Community Advocates for Residents’ Empowerment (I CARE) ombudsman program. The two organizations work in conjunction with each other to solve nursing home conflicts on an individual basis.
“The cases are so much more severe for younger residents because they usually deal with mental disability issues,” she said. “In my sixteen counties, we started just handling complaints that dealt with traumatic brain injury or substance abuse.” Younger residents commonly have mental disabilities or severe physical disabilities that require around-the-clock assistance not provided elsewhere.
“Some of the residents were being put into long-term care facilities by the judicial system, often because of overcrowding in the prison system,” she said. “They felt as though the facilities could watch the residents more.” Often, these legal troubles would result in violations of confidentiality among the staff, and while Wacker still wanted to advocate for them, the cases tended to be “all-consuming,” requiring more time to solve than the average cases.
“We made the decision in my sixteen counties, and I know it sounds horrible, to make a point to the legislators to say, ‘Look, we don’t have the staff to handle those types of cases,’” said Wacker. Though she still looks for angles from younger residents that could be signs of systemic problems, Wacker announced to nursing homes last May that her organization would no longer file formal complaints for residents under 60.
According to Phil Bloomer, U.S. Representative Timothy Johnson’s Champaign office press secretary and scheduler, Johnson is working to increase reimbursement for younger residents, particularly those in rural areas. Bloomer also said that a few people in the office work directly with constituents to “take care of any entanglements.”
Still, these measures do little to help Wacker, whose organizations receive most of their money through legislation like the Older Americans Act. These measures are vague in their language, suggesting that the I CARE program “may,” rather than “shall,” help younger nursing home residents. Any confusion would need to be cleared up before these organizations would formally take on cases for residents under 65.
However, even before the regional Agency on Aging and I Care reached this debate, there were still few available options for Patrick Kelly. “I definitely needed an intensive level of care when I first came in, but at some point, I got better and I was ready to take advantage of assisted living.” However, the system had not caught up to Kelly.
Kelly has dark gray hair, a receded hairline, and a tinted left eyeglass lens. He has some trouble hearing and has to speak slowly because of his stroke, but his voice is still feisty as he explains his predicament.
Kelly first applied to Prairie Winds supportive living more than three years ago, before the facility was even under construction. Supportive living is usually covered by Medicaid and offers both physical and medical assistance, but residents are granted much more freedom than in nursing homes. He was told that he would need to wait in order to meet the age minimum of 65 years. In the meantime, Kelly said that he remained the youngest resident at Carle Arbours who was not severely disabled. “There just wasn’t a whole lot of companionship,” he said.
“I had no experience with a nursing home before, so I wasn’t prejudiced then,” said Kelly. “However, at Carle Arbours, I found all the negatives you could imagine that a nursing home could have.”
He said that though the nursing home therapy sessions were very helpful for his recovery, the overall facility “paled in comparison” to Prairie Winds. He shared a room with three elderly men, so privacy was limited. Meals were also frustrating. “We had no choices where the food were concerned, and you had to eat it or lump it,” he said.
Sixth months before he turned 65, Kelly reapplied to Prairie Winds and was told that he was on a list of potential residents. “I kind of relaxed but I still needed to hear that I was accepted,” he said. Five months ago, the woman that had been occupying his current room passed away, and he was allowed to move in shortly afterward. “The maintenance man repainted the room and cleaned the carpeting the week she passed on, and I moved in the next day,” he said.
Sitting in a blue armchair in a spacious “efficiency type” unit, Kelly said he now has considerably more space for his music and book collections. More importantly, he appreciates being treated with a new level of respect. “Our individual rights seem to rise above everything else,” Kelly said.
He has been able to venture outside the facility as well. “I was dumbfounded the other day, because I realized for the first time that I was at the Illinois transportation building and I was only limited by the number of places the bus could go,” Kelly said.
Of course, though Kelly eventually met the age criteria, these kinds of palatial facilities remain exclusive to older Champaign residents. According to Margaret Seggebruch, Prairie Winds’ director of marketing, that rule will not be changed. “The state of Illinois came up with that,” she said. “This program was designed to keep people out of nursing homes.”
Currently, the 100 rooms have been almost entirely claimed, with many more residents hoping for openings. There are also duplex homes next door intended for residents age 55 and up, but Seggebruch said that they do not receive assistance through Medicaid. “The homes have been designed for people with some disabilities, so they have wider doorways and are all on one level, but they don’t offer any other amenities,” she said. Because of limited state funding, several of these homes have not yet been purchased.
Even though nursing homes have become the last resort for younger people with disabilities, not all Champaign facilities are willing to take them in. Champaign County Nursing Home (CCNH) in particular has been very selective over the years. Louann Meier, the former director of nursing who retired earlier this month, said that she deliberately “tried very hard not to admit people who were younger than 55.”
According to Meier, admitting younger residents opens doors to problems that long-term care nurses and older residents are unaccustomed to handling. Expectations for activities, diet, and socializing differ vastly between the two groups. “If you were suddenly injured in an automobile accident or you had a heart attack at a young age, your life is nothing like the lives of the people who live in a nursing home,” she said.
Meier said that these differences make life in the nursing home “very bad” for both the employees and the younger resident. “Residents become less willing to cooperate or to go to therapy because the people in there are 20 to 30 years older than them,” she said.
Beyond age differences, living habits can also affect later lifestyles. Many potential young residents have histories of alcoholism, drug addiction, or even just reckless behavior. “Life doesn’t change because you turn 45 or 55,” said Meier. “People continue to be the same dysfunctional people they were when they were 20.”
Earlier in Meier’s career, most attempts to introduce younger residents into CCNH did not work out well. There were instances in which visitors would come in drunk, bring drugs into the building, or even sell them within the facility. Meier said that only one man, 48 years old, has been admitted in the last year, after a drastic heart attack coupled with a stroke.
The burden to take on younger residents with disabilities didn’t always fall exclusively on Champaign County nursing homes. Meier pointed out that those with mental disabilities have particularly suffered, as several mental health centers have been shut down over the past 25 years. For instance, the Adolf Meyer Mental Health and Development Center in Decatur was a popular option until it closed in 1995. She said that the 5th floor psychiatry unit in Provena Covenant Medical Center also used to provide long-term care options but has recently become much more restrictive.
“We now end up with people whose primary diagnosis is really psychosis,” said Meier. “Then the physicians and family members even hide that, and then we end up with people in the building who … turn out to be dangerous to other folks.”
Meier said that only a handful of “lucky” residents would be admitted by psychiatrists to the Pavilion Behavioral Health System in Champaign, and the rest are “just farmed out to regional nursing homes.”
Though programs accommodating those with mental disabilities remain scarce in Illinois, a select few facilities have opened their doors to younger residents with less severe problems. Two of these are the Eden Supportive Living facilities in Chicago and Fox Valley, which both take in residents between 22 and 64 years old. Like Prairie Winds, Eden offers some medical care and physical assistance, but with greater emphasis of independence compared to nursing homes.
“We’re doing this for family reasons,” said Mitch Hamblet, president of Eden. For Hamblet, his sister and two aunts all had multiple sclerosis, and he wanted to ensure that they would never have to live in a medical institution. “We wanted them to be as if they were still in their old condos,” Hamblet said.
Hamblet said that one of the main reasons why there haven’t been more of these facilities in Illinois is because they are cost prohibitive. “There’s a need for assisted living, but there’s an issue of money,” he said. “It’s difficult to finance, and for some residents, not all, to afford it.”
According to Elliot Peppers, director of development and marketing at the Chicago facility, Medicaid will cover the bulk of the required $3,000 per month, but residents must still provide $674 of that through pensions, social security, or other means. Residents will then receive $90 back for cost-of-living expenses.
“Seniors tend to have more money for supportive living than younger people because they’ve had a lifetime to build up savings,” explained Hamblet.
Despite statewide demand for these services, Hamblet said that the waiting list “isn’t as gigantic as you might think,” because the application process takes anywhere from a couple days to a couple months. Each potential resident needs to be screened by the state to make sure that he or she legitimately needs an Eden apartment.
Both the Chicago site and the Fox Valley site, at 134 beds and 150 beds respectively, have remained nearly full since their openings. Beyond that, it has generated interested across the nation, though Eden primarily takes in residents from the Chicagoland area. Peppers said that he has received calls from Florida, Maryland, Arizona, and Ohio. He is currently working with a family to transfer a man to Chicago.
Quality of life remains very high at both sites. In addition to receiving praise earlier this year from nursing professor Sandy Burgener at the University of Illinois at Urbana-Champaign, the residents at Eden reportedly take advantage of their freedom by going back to school and, in one instance, getting married.
The downside is that Eden is not equipped to take care of patients with mental disabilities. Peppers said that while Eden’s environment isn’t suitable for these cases, he wasn’t sure where else to send them besides nursing homes. “Nursing homes have always dominated this market, and they take call ages,” he said. “They’ve always been there to fill the gap, even though it may not be the most appropriate for when people get sick.”
There are some critics that argue that even supportive living environments are inappropriate for younger people with disabilities. Rahnee Patrick, co-coordinator for the Chicago branch of ADAPT, said that being forced from one’s home in any capacity can be deeply depressing. (ADAPT once stood for American Disabled for Accessible Public Transit but has since expanded its scope to long-term care solutions.) She experienced this firsthand at an early age; she was diagnosed with a “very extreme” case of psoriasis at age eight and arthritis at age 10.
“As someone who grew up with a disability, the scarce options don’t really give you much hope that you’d be able to be integrated in the community with your non-disabled classmates,” said Patrick. Unable to cover the substantial medical costs, Patrick worried for a long time that she would end up homeless. She even considered suicide. “I don’t think I’m alone in feeling that isolated, and it’s the system that’s set up to help us that actually makes us want to give up,” said Patrick.
Patrick said that there is a “system bias” which traces back to the country’s consideration of eugenics at the beginning of the 20th century. “At this point, people were to be removed from the gene pool and not allowed to live with non-disabled people,” she said. ADAPT argues that these facilities separating the disabled from mainstream society are an outdated carryover.
Instead, Patrick suggested that using Medicaid money to cover home care is her long-term goal. She and other members of ADAPT have organized protests, written letters, and have used civil disobedience in order to convince legislators to offer more options. “One of our goals when we started in the early ‘90s was to have Medicaid cover 25% of in-home services, and since then we’ve actually exceeded that,” said Patrick.
Even so, Patrick admitted that much work needed to be done, as there are still much younger residents in nursing homes. She said that she’s even seen some nursing homes in the state with cribs intended for toddlers.
“It’s a system that doesn’t serve the tax payers either, who are providing their own income and paying for wasteful services in the hope that people with disabilities can live quality lives, and that’s a real crime,” said Patrick.
ADAPT has met with former Governor Rod Blagojevich and the staff of current Governor Pat Quinn, and though Patrick wishes the organization had enough money to open up more state branches, she said that the Chicago branch was “not just addressing Chicago, but all Illinoisans.”
On a national level, the National Citizen’s Coalition for Nursing Home Reform (NCCNHR), located in Washington, is fighting for similar causes. Janet Wells, the director of public policy, said that presently nursing homes are still taking in younger residents because they’re losing others to assisted living. “People who have the means to choose wouldn’t go with nursing homes because the quality of care has been so poor,” said Wells.
As advocacy groups continue to look for long-term options for nursing home residents under age 65, the legal team at Equip for Equality in Illinois is fighting to make sure those already in nursing homes at least receive the proper degree of care. When the I CARE ombudsmen cannot field certain cases because of age restrictions, they encourage residents to file claims with Equip for Equality instead.
“The group is essentially a bunch of attorneys,” said Tami Wacker of the EICAAA. “They go to court and have the power to subpoena, so with some cases, they can make more of a dent than we can,” said Wacker. She said that it can be an uphill battle to be approved.
However, when enough cases have been sorted through, Equip for Equality has filed several class-action lawsuits. One of the more recent cases deals with supposed violation of the Americans with Disabilities Act. Filed in 2007 and still pending, Equip for Equality lawyers have argued that unnecessary institutionalizing of disabled Illinoisans is discriminatory and that it strips them of their dignity.
Rose Stein, intake manager and attorney for the organizations abuse investigation unit, said that her organization and ADAPT share similar goals and ideas. “There’s the idea that money follows the person, where a person is assessed for whatever their needs are, and the money that they’re eligible for follows them to any facility,” explained Stein.
In addition to supportive facilities like Eden, she said that many have found happiness in “community integrated living alternatives,” sometimes called group homes, which often include job programs. “Depending on your limitations, you can participate in making a living, in doing your own laundry buying your own groceries — all of the things we take for granted,” said Stein.
According to Elliot Peppers of Eden, more positive changes in the environment have had a major impact on the residents there. “For a long time, about a third of them were locked in environments with a lot of people who are a lot sicker than they are, and so often their conditions improve when they come here,” said Peppers. “That makes what we do so much more rewarding.”
This kind of transformation is also apparent when talking to Patrick Kelly at Prairie Winds. Eight years ago, he arrived in a nursing home in an ambulance. Now, because he meets the senior cutoff, he’s able to be independent for the first time in years, helping out during resident council meetings or checking his e-mail. As of now, it remains to be seen when Champaign County residents under 65 will have those same opportunities.