[This text was originally published in AREA Chicago #13 in April 2013]
A Home Beyond Nursing Homes. The advantages of home and community-based services
As a case manager for a community mental health agency, I meet with nursing home residents to discuss the possibility of independent living. While completing intake paperwork, one routine question I ask is if the resident has ever experienced homelessness. Several tell me they currently are.
In a state lacking infrastructure and funding for mental health services, long-term care facilities function as catch-all residences for those living with mental illness. Lacking independence, residents with mental illness often feel out of place in nursing homes, yet they depend on the social support provided by fellow residents. Although a recent federal initiative is a step in the right direction, more supportive group homes are needed to help nursing home residents transition to independent living.
The common story I hear goes something like this: “I was psychiatrically hospitalized and had nowhere to go, so I came here, and that was a few years ago.”
Having stabilized, residents ready for less restrictive housing commonly have no other option but to remain in nursing homes, especially those without family or outside friends. But under the Deficit Reduction Act of 2005 , the Centers for Medicare and Medicaid Services developed an initiative to address this problem, while also reducing Medicaid spending.
The Pathways to Community Living Program (formerly known as the Money Follows the Person Program ) offers Medicaid recipients living in long-term care facilities the option to transition into their own apartment with “home and community-based services” (HCBS) . These include case management (such as medication monitoring, therapy, home visits) and day programming (such as substance abuse and mental health education). Participants in the program also receive the Illinois Bridge rental subsidy, which pays the majority of their monthly rent. Implementing more HCBS decreases Medicaid spending: the AARP reported in 2009 that the money spent on a nursing home stay for one beneficiary could provide HCBS for three beneficiaries.
It’s no surprise that most of the residents I meet with prefer the idea of HCBS to nursing homes. In a word, most residents report they lack “freedom.” This includes the autonomy to choose daily activities (like finding employment or staying out late), as well as the responsibilities of managing one’s own life (such as cooking and paying bills). However, most Pathways participants are estranged from any outside social support, such as family and old friends. Beyond professional supports, transitioned participants commonly feel closest to friends still residing at their former nursing homes. These relationships bring them back to the facility, sometimes daily, even though they have a place of their own.
Therein lies the dilemma for most residents: either feel at home or have a home. Most residents choose the latter, hoping to establish a “normal” life, as they put it. Too often, however, I’ve seen promising candidates move into their own apartment only to return quickly because they became lonely or frightened. Sometimes individuals turn down the program because living alone is too intimidating, or they aren’t approved to do so because of memory defects or other cognitive deficits.
On the basis of such experiences, I believe the Pathways participants would benefit from more group homes and a change in policy regarding them. The individuals already residing in a group home can help a Pathways participant feel comfortable by introducing them to contacts in their neighborhood. Some social service agencies operate such residences, but they have limited capacity and waiting lists. Additionally, Pathways protocol prohibits participants from occupying any group home that has more than four residents. Currently, there are none available in Cook County that fit the criteria. Creating more group homes and changing this policy would most likely decrease the rate at which residents return to nursing homes and would also open the program to others interested in independent living.
Since implementing Pathways in 2008, Illinois has transitioned 533 individuals out of nursing homes. Current research shows that 72 percent of participants who transitioned to an apartment in 2011 remained there for a full year. As the state aims to decrease the recidivism rate and increase the number of transitions, it must determine how to work with community providers to provide more than housing, but a home to Pathways participants. ◊