In This Chapter
Deciding whether living at home is an option for your loved one
Understanding other specialized housing options
Determining the right fit for your loved one
Evaluating residential-care programs
Preventing your loved one from being homeless
Having a stable place to live and call home — whether it’s an apartment, a private room in someone’s house, or a bed in a supportive residence — is such a profound human need that it’s one of the cornerstones to recovery for people with schizophrenia.
Ideally, people with schizophrenia should be able to choose a home based on how it meets their preferences in terms of where, how, and with whom they want to live, something many people take for granted. However, for most people with serious mental illnesses — in most communities across the nation — housing choices are either limited or, more often, nonexistent. Either choices are made for them (by others) or choices are made impossible by virtue of the scarcity of available housing options.
In this chapter, we look at the various housing options open to people with schizophrenia, from living at home to living in a group home, and help you find solutions that will work for everyone involved.
Recognizing the Challenges in Finding Housing
Finding a place to live can be one of the most difficult challenges in life for people with schizophrenia. Most people with disabilities live on limited
and/or fixed incomes. Plus, the stigma and discrimination associated with schizophrenia compound the problem of finding housing and earning a living wage — especially if the individual has or has had a co-occurring substance abuse problem, has ever been involved with the law, has had tenant-landlord problems in the past, or needs to be hospitalized for an extended period of time.
When there are no viable alternatives, many people with untreated schizophrenia end up homeless, winding up in hospitals, in jails, in shelters, or on the streets.
In the following sections, we cover some of the challenges in finding housing for people with schizophrenia.
The financial cost
Many people with schizophrenia live on disability or on what they earn at minimum-wage jobs. This means that housing choices are extremely limited, especially if living at home isn’t an option.
The availability of affordable housing in the United States is nothing short of a national crisis. For the individual with schizophrenia, there is a huge gap between the cost of housing and disability income. According to one recent report, in 2006, the average income of an individual dependent on Supplemental Security Income (SSI) was $632 per month, while the average cost nationally to rent a one-bedroom or efficiency unit was $715 per month. Given other essential expenses, such as food, transportation, healthcare, and clothing, this puts conventional housing out of the reach of the average person with schizophrenia.
Most sources of funding for housing for people with schizophrenia fund programs rather than people. The exceptions are Section 8 certificates and rent vouchers that are available on a very limited basis from religious or nonprofit organizations. In addition, some private health insurance and disability policies may provide benefits for programs that provide residential treatment.
It may fall to parents or other relatives to bridge the gap in housing costs, subsidizing their loved one’s SSI with additional money to rent a suitable place. Some families set up special trusts so that their offspring inherits their home upon the death of both parents, to help keep the burden of support off other relatives when they’re gone.
The scarcity of subsidized housing
Although some housing is available at below-market rates, the units are so few in number and waiting lists so long that it has become discouraging for
people to even apply. For example, there are far too few Section 8 slots available for individuals with schizophrenia who are eligible; the average waiting time is almost three years!
To fill the gap, a number of substandard for-profit facilities exist in various communities, especially in high-cost cities with tight housing markets. Even though the cost of these facilities often taps a significant portion of an individual’s disability income, families recount their relatives living in rodent-infested buildings with numerous code violations, including leaks and insufficient heat and hot water.
Because of the lack of options, people often are forced to live where units are available. This may mean compromises in terms of the nature of the neighborhood; accessibility to services; and proximity to family, friends, and other natural supports.
Lack of continuity
A too-common scenario is that a person with schizophrenia moves in and out of his family home (after a squabble or hospitalization) or from one substandard or inappropriate housing situation to another. This lack of continuity necessitates frequent changes in service providers and having to learn to negotiate new neighborhoods, one after another. Yet, people with schizophrenia need stability; any lack of permanency in their living situation can have a negative impact on their psychiatric condition.
Sometimes people with schizophrenia are thrown out of housing settings because they’re deemed to no longer need services. Ironically, it may be the stability of their current housing situation that has helped them to stabilize.
Because housing is so scarce and expensive, people with schizophrenia find that shared living situations (or having roommates) is often the only way to make ends meet. It’s difficult for anyone to negotiate living in close quarters with a complete stranger, let alone someone with schizophrenia. As a result, the privacy of residents living together is often compromised, and tensions arise from living in close quarters with unrelated adults who share few common bonds besides their illness.
The availability of the right amount of support and supervision can make all the difference in an individual’s success or failure in community tenure. People with schizophrenia need varying degrees of support and supervision at various times. Resources (such as transportation and medical care) need to be accessible, and mental-health support services need to be able to respond flexibly based on a person’s needs.
There’s a great deal of controversy about whether housing should be contingent on an individual’s willingness to accept services. Many consumers and some professionals see this as coercive and counterproductive to recovery.
Because of the gaps in housing and supports, many people with schizophrenia wind up inappropriately placed in more costly inpatient settings and local jails. A substantial number also join the ranks of the vulnerable homeless, living in shelters or on the streets.
Living at Home
Because of the scarcity of housing, many families pitch in to fill the gap, often at an extremely high cost — both financially and emotionally — to them and to their loved one. Parents or other relatives may offer housing to the individual in their own home or alternatively, support the cost of housing someplace else. Many people open their homes with justified trepidation about the potential conflicts of living under the same roof with their loved one with schizophrenia.
Understandably, living with relatives often precipitates or exacerbates conflicts in the household. This is especially true if the person with schizophrenia is an adult offspring living with one or more parents.
In many cases, parents are older and may have challenging chronic health problems of their own. They may also be facing financial problems: both in terms of declining incomes as they approach or have reached retirement, coupled with savings that have been sharply cut into after years of care-giving for someone with schizophrenia. One 76-year-old woman we know struggles — financially, logistically, and emotionally — to take care of two sisters with schizophrenia on her own. She’s unsure how much longer she can continue without compromising her own health.
Moreover, because parents generally don’t outlive their offspring, this obviously isn’t a long-term solution, and the uncertainty can be unnerving. Parents worry about what will happen when they’re gone and what role other siblings will be pressed into playing in the future (see Chapter 11).
In rare instances, living at home works out well and is reciprocal for the person with schizophrenia and her family. No one feels burdened or put out by the arrangement. For example, we know an able-bodied young person with schizophrenia who is a wonderful support to his ailing mother who oversees his mental-health care and provides meals. But this should be a mutual choice, not a default because no other options exist.
Having a written list of rules to abide by can be very beneficial if you plan to live with your relative with schizophrenia. (See Chapter 12 for more on the issues that arise when people with schizophrenia live with others.) Keep in mind that caregivers should have rules to abide by as well. Just because someone’s living in your house, for example, doesn’t give you carte blanche to go through her things or get angry if he wants to go out with friends on weekends.
If life were a fairy tale, we’d all live happily ever after, but it’s not. Sometimes keeping a person with schizophrenia becomes untenable. Any one of the following reasons can lead to a decision that your loved one needs to live elsewhere:
The individual is threatening and represents a danger to himself or to other members of the family.
The person has untreated substance abuse problems that require a different type of care and approach than you can provide (such as inpa-tient detox).
There are financial, social, and/or medical problems that make it prohibitive (for example, elderly parents dealing with a life-threatening illness).
The illness is causing so much stress in the family that it’s highly disruptive to relationships between spouses or parents and other children.
The person with schizophrenia is unwilling to accept any treatment and is actively psychotic, leading to chaos in the household.
If you decide that it’s impossible for your loved one to live at home, expect to feel guilty, but don’t let it overwhelm you — or change your mind in a situation that you know is really impossible. In the long run, this decision will benefit you and your relative. Give yourself time to talk over the decision with other people you respect and who understand the situation.
Specialized Housing Options
If your loved one can’t live at home, and isn’t able to care for herself without help in her own place, you may need to look at specialized housing. Specialized housing for people with schizophrenia (generally subsidized by government or private-sector organizations) can take one of several forms:
Housing programs for people with disabilities (including or limited to people with mental disorders)
Mixed-used housing in the community (with units set aside for people with mental illnesses or other special needs)
Scattered-site apartments or housing units for people with mental disorders that are fully integrated into the community
Nursing homes aren’t just for the elderly; people who need 24-hour skilled nursing care for any reason are eligible for nursing-home care. People with schizophrenia may have health needs in addition to schizophrenia that may make a nursing home a good fit. The downside: It may diminish opportunities for socializing with peers.
When you first start searching for care for a relative who is actively hallucinating or delusional, you may think that long-term hospitalization in a mental-health facility is a logical choice. Although this was true several decades ago, it’s rarely an option today.
Long-term hospitalization isn’t an answer to the housing shortage. In fact, even as a treatment option, it’s being used less and less frequently because of changed philosophies of treatment and the rapid escalation in the costs of inpatient care. With the move toward treatment of schizophrenia in the community, state psychiatric hospitals have dramatically reduced their number of inpatient beds and reduced the length of stay of their patients accordingly. For someone to be hospitalized for a long time today, he would need to represent an ongoing danger to himself or others.
There are upsides and downsides to each of these options. Mixed-use or scattered-site housing generally is more integrated into the community as a whole, but specialized housing programs may be more helpful to people with serious mental illnesses. Additionally, such programs may provide greater opportunities for peer support.
Searching for housing
For a person with schizophrenia, finding a place to live is no easy feat. Eligibility and application requirements for affordable housing programs are often complex and difficult to understand. It requires a lot of legwork and networking with other people and organizations to find out what resources, if any, exist in the community. It may also entail signing up on long waiting lists.
Your loved one will likely need your help if he’s looking into housing programs. In fact, you may feel like you’ve taken on a full-time job — a frustrating one, because you’ll be dealing with government agencies much of the time — while assisting your loved one in finding housing.
Some of the community resources that may be of assistance in your search include the following:
The local mental-health authority, which may directly sponsor housing units, contract out to other community organizations, or support services in housing operated by others
The state mental-health authority or health department, which may license certain categories of housing within a state (for example, adult homes, board and care homes, or supportive housing programs)
The local public housing authority or U.S. Department of Housing and Urban Development (HUD) regional office, which may be aware of opportunities for low-income housing or HUD-supported programs
The National Alliance on Mental Illness (NAMI) and other family organizations, which may be familiar with resources because of their experience with relatives living in these units or because they’ve heard about them from others
Peers in day programs, social clubs, support groups, and treatment settings, who may be able to provide some housing leads
If you or your loved one is hospitalized, you need to start planning for his discharge and where he’ll live almost from the time he’s admitted to the hospital. Given the length of waiting lists for various housing options, you may need both an interim plan as well as a long-term one. The hospital social worker or discharge planner may be able to help you get started.
Making sense of the options
When you’re buying a house, you learn to interpret the overly optimistic descriptions used to describe housing. A “fixer upper” is a house that’s falling off its foundations; “cozy” means the place is suitable only for one (very short) person. Unfortunately, it’s not so easy to decipher the terms used to describe housing for people with mental problems. The same terms (for example, transitional housing) may have different meanings and conditions in one state, community, or program than they do in another.
In the following sections, we look at terms commonly used and what they generally (if not always) refer to when searching for housing.
There is no commonly accepted typology (classification) of housing terms. They vary from state to state and sometimes from community to community. Supportive housing, for example, may have very different meanings in terms of the actual type of supervision provided.
Permanent versus transitional housing
Permanent housing means it’s your loved one’s for as long as he can pay the rent and uphold the conditions of his lease. The benefit of permanent housing is that it allows the person with schizophrenia to stay in a known setting, to find a place within the community, and to develop a sense of belonging and security. Because change and transition can be disconcerting for someone with schizophrenia, these are real pluses.
Permanent-housing programs may or may not require the resident to take advantage of treatment and support services as a condition of living there.
By definition, transitional housing is temporary and available only for a limited time. Usually, the expectation is that the person will “graduate” to permanent housing. Programs funded by HUD, for example, have a 24-month limit.
Transitional programs are sometimes called halfway houses, because they provide care in between an inpatient stay and independent or supportive living in the community.
Transitional housing programs are generally intended for people who require services and support before they’re able to live independently, so there’s often a requirement that residents take advantage of the services they provide. These may include 24/7 assistance with the activities of daily living, vocational rehabilitation, medication management, social-skills training, provision of cafeteria-style meals, substance-abuse services, and so on.
Transitional housing can take place in a large congregate care setting (such as a community residence) or in a smaller group home that is shared by two or more unrelated adults who may or may not have their own bedrooms.
Supportive housing versus supported housing
Despite the name similarity, supportive housing and supported housing are two different things. In supportive housing units, a range of services are provided on-site and people live in close proximity with others who have been diagnosed with mental illnesses. In supported housing (also called scattered-site housing), services are provided off-site and are usually more limited.
Supportive housing is generally intended for people who require some degree of ongoing on-site support and supervision in order to live in the community. Supported housing may include independent apartments or single-family homes with mobile outreach services.
Both supportive and supported housing tend to offer permanent rather than transitional stays unless there is an egregious breech of house rules.
Certain housing settings are specifically designed for people with co-occurring mental-health and substance-abuse problems. Wet housing refers to residences that provide housing for people who still aren’t able to pledge abstinence. If this housing weren’t available, they would likely be homeless. Damp housing is intended for people who are willing to be abstinent in the residence, although they may use drugs or alcohol away from it while they work toward sobriety.
Although supervised housing offers many benefits for people who might otherwise have no other alternatives and may otherwise cycle in and out of hospitals, when units are supervised by staff, many residents feel as if they’re institutionalized, having to account for their behavior and whereabouts 24/7. In other words, there can be an overemphasis on control to the extent that respect for the individual falls by the wayside, which can lead to clients leaving in a huff and then not being allowed to return. Make sure you and your relative understand the rules about leaving and returning before she moves in.
Boarding homes and foster-care homes
Boarding homes (where unrelated adults live together in someone’s home, sometimes with meals) and foster-care homes (where there is more supervision, the amount of which varies from state to state) can be licensed or unlicensed homes where someone in the community houses one or more people with mental disorders, providing them with room and board. Both proprietary boarding homes and foster-care homes can be highly variable in terms of what they offer to a particular person with schizophrenia; many can be purely custodial as opposed to therapeutic.
If you find that rare person who boards people with mental illness out of a genuine love and care for them, do everything in your power to hold on to them! These saints are one in a million. Conversely, if you sense that something’s not right in your relative’s living situation, try to get him to talk about his life there, and start looking into alternative situations, because you may have to move him out very quickly under emergency circumstances.
One international study suggested that, worldwide, boarding homes are the least desirable type of residential setting in terms of their access to social support, meaningful activity, and work.
Starting the Conversation: Questions to Discuss with Your Loved One
Families, friends, and service providers can play an important part in helping an individual with schizophrenia think about housing options. Some of the questions you need to openly discuss with your loved one include the following:
Can your loved one live independently or does he need support and supervision? For example, is he responsible for taking care of his own needs? Does he show good judgment? Does he know how to handle an emergency?
Is your loved one able to access services in the community, or would it be more beneficial to have those services on-site? Does your loved one require supervision and oversight or would she be able to take advantage of community-based programs on her own?
Is it reasonable for the person to live with family, or would it cause too much friction? Is there enough space? Are you able to handle the burden of another person in the house? Do you think you would be arguing much of the time?
How much money does your loved one have available for housing each month (based on entitlements, income, and/or contributions from the family)? What kind of housing can your loved one realistically afford?
What are your loved one’s preferences? People should have some say in the types of settings and locations that most appeal to them, given their choices are consistent with their needs and resources.
Evaluating Residential Care
Sometimes you just know you’ve found the right living situation for your family member, but more often, you have to choose between several acceptable-but-not-perfect alternatives. When you find a potential housing opportunity, some of the questions you should ask include the following:
What type of housing is provided? How long can an individual reside here? What is the philosophy of the operation?
Who supervises the residence and what type of degree or training does that person have?
What types of clients are most successful in this setting? What is the out-of-pocket monthly cost?
Are services provided? If so, what types of services? On-site or off-site? What are the rules regarding drug and alcohol use? What oversight agencies license or accredit the facility? How are infractions of rules handled?
How is relapse handled? Is a room/apartment saved for when the individual is discharged from a hospital?
Do residents participate in the governance, operation, and/or evaluation of the facility or program? If so, in what way?
Are there mechanisms in place for interested family members to communicate with staff?
Finally, ask yourself, “What’s my gut reaction to this place?” “How would I feel living here?” Never ignore that nagging feeling or intuition that something’s just not right.
The need for community acceptance: Understanding and averting homelessness
Everyone thinks there should be housing available for people with mental illness, but no one wants it next door to their house. Historically, when government or advocacy groups have tried to develop specialized housing units to serve the population, the most common response has been “not on my block” or “not in my town,” a phenomenon so commonplace that it’s nicknamed NIMBY (not in my backyard). As a result, many communities are now grappling with the problem of homelessness among people with serious mental illnesses.
With shrinking budgets at every level of government and the difficulties in establishing supportive housing or subsidized units in regular housing, people with schizophrenia are forced to compete on the open housing market like everyone else, albeit with several strikes against them. Clearly, many of them aren’t able to overcome these hurdles: It’s estimated that about one-third of people who are homeless have serious mental illnesses — and the majority of them have schizophrenia.
A number of federal programs, sponsored by HUD, are focused on providing affordable housing and support or averting homelessness for people with disabilities. The HUD programs are intended to provide a coordinated strategy for communities to provide a continuum of care, which includes outreach; intake and assessment; emergency shelter; transitional housing; supportive services; permanent supportive housing; permanent housing; and homeless-ness prevention. The programs include
The Sec 811 Supportive Housing Program for People with Disabilities: This is the sole program providing supportive housing for non-elderly low-income people with disabilities.
The Section 8 Housing Choice Voucher
(HCV): This can be used to obtain private rental housing in properties that meet the HCV requirements. Administered by local public housing authorities, there is also a home-ownership option.
The McKinney-Vento Homeless Programs:
The components of this legislation include a Supportive Housing Program, a Shelter Plus Care Program, and a Section 8 Moderate Rehabilitation Single Room Occupancy (SRO) Program.
These federal programs are always under siege and threat of cuts when more, rather than less, is what’s actually needed. In the private sector, many landlords still continue to discriminate against people with mental illness.
It’s important for mental-health advocates to understand that housing is a basic need of people with schizophrenia and to advocate for ways to provide more housing options that offer dignity and support recovery. Some of this entails educating landlords, legislators, service providers, and taxpayers about what may seem obvious — the importance of a place that feels like home to any person’s health, mental health, and sense of well-being.