In this section:
The Benefits of Community Living - why is it important for people with severe mental illness?
Research indicates that, for people who are adequately supported and have the functional capacity, transitioning to living in a community setting (as opposed to in-patient treatment or psychiatric hospital facilities) is an important step in attaining recovery. The standards for treatment of severe mental illness are undergoing a sea-change; rather than settling for a remission of visible symptoms, health-care providers and consumers are now looking at returning to the previous functional level (the ability to do the things that one was able to do before becoming ill) as the ultimate goal of treatment. For many people with schizophrenia, bipolar disorder, and other psychiatric disabilities, living in the community can be a part of returning to a healthy level of functioning.
How do quality community housing facilities help recovery? Consider the following findings from research:
- Community living reduces stigma. Browne and Courtney (2004) found that people with severe mental illness living in apartments or community housing are more accepted, less lonely, and have a greater quality of life (as compared to those in specialized treatment facilities).
- There is a relationship between quality of housing options for people with severe mental illness, overall global functioning, and quality of life. A comparison of psychiatrically disabled residents of boarding homes vs. private homes (with family or alone) in Australia found that residents of boarding homes had greater measures of cognitive problems, social problems, overall disability, and reduced levels of self-care. However, their overall psychiatric symptoms were no more severe than those living in private homes; this implies that the causal factor is the difference in housing situation, not a fundamental difference in disease severity between the two groups.
- A key determinant for readmission rates in schizophrenia patients is the type of situation to which they are discharged. Browne and Courtney (2004) reported that people discharged to lower-quality housing situations had higher rates of readmission to the hospital. Lack of quality housing options can contribute to the "revolving door" phenomenon experienced by so many people with mental illness.
- The quality of housing has a critical effect on relapse rates (J Community Psychol,
1991:19:1). The results of this study, which followed the outcome of patients discharged from in-patient care, concluded that when patients are in need of both residential and psychiatric services, "housing interventions are more important than psychiatric services for patients' ability to stay in the community" (measured by the rate of rehospitalization during a six-month period).
- 80-90% of people with severe mental illness indicate that they would prefer to live in the community as opposed to a psychiatric institution. Although this might seem like an obvious point, the extension is that providing adequate, supportive community housing options to comply with patients' preferences will positively influence their subjective perception of their own quality of life (Horan et al, 2001).
Characteristics of a Good Living Situation for Someone with a Psychiatric Disability:
A Review of What Works - evidence-based literature review on housing and residential support for people with psychiatric disabilities:
In 1997, the Canadian Advisory Network on Mental Health released "Review of the Best Practices in Mental Health Reform." This was a massive review of both published and unpublished literature to that date, the goal of which was to derive evidence-based practices to direct future mental health policy programs.
With regards to residential facilities for people with severe mental illness, the literature review revealed the following general points (which seem to be in agreement with the more recent literature reviewed by this author):
- community residential programs can successfully substitute for long-term inpatient care
- supported housing can successfully serve a diverse population of persons with psychiatric
disabilities but support networks need to be monitored
- consumer choice is associated with housing satisfaction, residential stability and emotional well-being
- consumers prefer single occupancy, choice, and supports when requested
- individuals with severe mental illness, including homeless people, can be housed when provided with assertive case management services.
Based on these and other, more recent literature reviews, the following characteristics have been identified by researchers and by mental health consumers themselves as the most essential to a good residential facility. Doing your best to assess the quality and sustainability of a housing situation for someone with a psychiatric disorder (keeping in mind the special needs of that person and their individual level of functioning) may be crucial to supporting a long-term recovery. To reiterate the findings in Browne and Courtney (2004): "A key determinant for readmission rates in schizophrenia patients is the type of situation to which they are discharged"
What is important for residents with psychiatric disabilities when looking for housing:
- Freedom of Choice:
Numerous studies from various countries (see Jones et al 2003, Tsemberis et al 2003, Browne and Courtney 2004)) of people living in community residential facilities report that in general, clients prefer the freedom of choice and flexibility (particularly in terms of living companions, or the option of living alone) of supported housing or independent living in subsidized housing, as opposed to group homes, half-way houses, or special live-in facilities.
- Stability: Research shows that clients prefer supportive/stable residential situations for independent living, as opposed to transitional solutions (i.e., facilities that limit how long residents are allowed to stay - such as many homeless shelters and halfway houses). Fakhoury 2002, in a meta-analysis of supportive housing programs, concluded that supportive housing environments (as opposed to transitional ones) facilitated the development of emotionally supportive networks, and higher overall functionality of residents.
- Domesticity: Taking care of daily maintenance and upkeep tasks for a home is not just a good daily routine - it creates a sense of ownership and purpose. For people with schizophrenia, who often struggle with symptoms such as apathy, lack of energy, and extreme withdrawal, having the opportunity to engage in a daily routine of housekeeping and upkeep can be especially therapeutic. It also creates a sense of "normalcy" - the person in recovery is doing the normal tasks that any healthy person would do, instead of being taken care of (which happens in hospital situations).
- Quality of physical environment - the actual physical comfort of a dwelling goes a long way towards making it feel less like a transitional solution and more like a home. Other important factors cited by surveyed clients in supported housing situations included: a convenient location to treatment facilities and community amenities, proximity to public transportation, and safety of the building and neighborhood.
- Organization/management of staff (if applicable): Some residential facilities may have live-in or visiting staff to provide support services to clients. One meta-analysis of supportive housing programs (Fakhoury 2002) showed that less restrictive regimes imposed upon the clients by staff actually leave more opportunity for the residents to create their own normal living rhythms. Another research study (Dickey 2000) defined the most successful staffed programs as taking a "nonthreatening approach", showing patience in encouraging client independence and motivation, responding quickly to client needs, having flexible services, and maintaining repeated contacts with clients over time.
Fakhoury 2002 also reported that the level of expressed emotion (EE) by staff members can have an effect on the wellness of clients. Expressed emotion includes a very specific subset of emotions:
critical attitudes, statements of dislike, annoyance, or resentment, with accompanying negative voice tone.
Situations of high expressed emotion can increase the risk of relapse, similar to any family or home environment with highly express emotions. If possible, try to get a feel for the expressed-emotion and general stress level of the residential facility, both among the staff and among the other residents.
- Support - Help with day-to-day living tasks - budgeting, shopping, planning meals, etc - is essential for a person in recovery. People with schizophrenia can get easily overwhelmend and over-stimulated; it is important for them to have support so as to avoid added stress and risk of relapse. Particularly during the period right after a hospitalization, when they may be adjusting to new medications and side effects, it is extra important that someone be available to help manage day-to-day tasks and to be a caring presence. The goal is to eventually bring the ill person to a state of independence (to the extent that they are able), but they will need to re-learn many of the skills for independent living first, and it can take months or even years to regain full functionality.
Some residential facilities will include support services as part of the program, but many will not - particularly if you opt for independent living in Section 8 subsidized housing (these situations are only subsidized for low-income individuals; they do not include support or rehabilitation services). It may be in your best interests to find a case manager to help with these and other support services during the recovery period. A case manager can also help with managing medications and treatment, applying for insurance and government aid, and finding vocational rehabilitation programs. If a case manager is not an option in your area, a family member or hired part-time help can also be good options to provide support.
- Love/social relationships: Although the subjects of housing facility studies in general preferred the greater choices afforded by independent living situations (as opposed to boarding homes or group living), one of the drawbacks often cited was the potential for loneliness and isolation. The importance of maintaining a social support network for someone in recovery has been stressed over and over in research studies; social relationships improve the overall wellness and functionality of someone with a chronic disease in a myriad of ways.
Of course, a love or partner relationship is not always an option (or necessarily a desire). But there are other ways to avoid isolation, even if someone is living alone. Keep in touch with relatives, siblings, kids, grandkids, and friends through phone calls, emails, or even just photograph walls. Pets can also be a great option for people in recovery - not only do they provide affection and company, but they give the ill person a purpose and daily tasks that can keep them from slipping into apathy. Some research has even shown the benefits of 'pet therapy' for people with disabilities.
References for above section:
Centre for Addiction and Mental Health Housing Discussion Paper (PDF document)
Dickey B. 2000. Review of programs for persons who are homeless and mentally ill. Harv Rev Psychiatry.Nov;8(5):242-50. Review
Jones, et al. 2003. Make yourself at home: People living with psychiatric disability in public housing. Int J of Psycho Rehab. 7, 67-79.
Review of the Best Practices in Mental Health Reform. Prepared by: Health Systems Research Unit, Clarke Institute of Psychiatry. Canada, 1997
Tsemberis SJ et al. 2003. Consumer preference programs for individuals who are homeless and have psychiatric disabilities: a drop-in center and a supported housing program. Am J Community Psychol. Dec;32(3-4):305-17
Browne and Courtney, 2004. Measuring the impact of housing on people with schizophrenia. Nurs Health Sci. 2004 Mar;6(1):37-44
Living at home vs. other options - ways to make the choice:
A mentally ill family member may be unable to live independently, even if they are of legal age to be living alone. In these situations, other arrangements can be made, either in the home or in another facility.
Many families are neither prepared nor equipped to accept a mentally ill relative into their homes, particularly if they have a job and a family of their own. It's most important that the patient be on medication, and if you have no way to ensure that in your house, then taking them in helps no one. Moreover, psychotic episodes may put you or your children in danger.
Indications that a person with severe mental illness may be able to live at home, and/or independently in the community:
- the ill person functions at a fairly high level, has friendships, and is involved in activities outside the house
- if there are young children, their lives are not negatively affected
- interaction among family members is relaxed, and
- the ill person intends to take advantage of available support services, and is compliant with treatment.
Indications that a person with severe mental illness may need more support than can be offered in the home:
- the main support person is single, ill, or elderly
- the person with schizophrenia is so seriously ill that there is little
or no chance to lead a normal family life
- children become frightened and resentful, and feel like they are living in a hospital
- marital relationships deteriorate
- most family concerns revolve around the person with schizophrenia
- no support services are used, or services are not available
- the individual has behavioral difficulties: for example, aggression or extreme antisocial tendencies
- the individual has a dual-diagnosis (substance abuse disorder and mental illness)
If one or more of the characteristics above describe your loved one, they may not be able to live independently in the community. A better option for them may be a residential facility with specially-trained, full-time staff, or perhaps in-patient care in a psychiatric facility.
Even though you may feel obligated to help your family member, and guilty about not taking on the responsibility, you first have an obligation to yourself (your own mental and physical health and well-being) and your family. The best thing for everyone involved is to find them another, supportive place to live. Research treatment centers, halfway houses, group homes, crisis housing, clubhouses, or a live-in home/nursing aide.
Housing options outside the family home:
The literature agrees that, given the diversity of people with severe mental illness, it is important to maintain a variety of viable housing options that serve this population. Following is a list of the more common housing models available in communities today:
Supported housing - Established by state-run programs, someone qualifying for supported housing will live independently in a community facility, either on the open market (such as an apartment), or in a non-profit or cooperative organization. Treatment is not associated with the living place, and there are usually not required group activities. The resident is not restricted on how long he/she is allowed to stay, which provides stability and a sense of home.
Residents of supported housing units are assigned a case manager to help them with day-to-day living. The main difference between this model and supportive housing (see below), is that support services are provided from outside the residence, usually by a different organization than the managment of the residential facility. This allows the support offered to be more flexible, and to potentially move with the resident if needed.
In the United States, the Housing and Urban Development department has designated funds for communities to establish supported housing. Properties using these funds - which are required by HUD to have subsidized rent and to provide some form of supportive services for clients - are designated as Section 811 housing. (More information - see HUD article on section 811)
Some characteristics supported housing
- Support: Support services are offered by a case manager. Support is flexible and can potentially move with the client if he/she changes dwellings
- Freedom of choice: Residents can choose to live independently, or with roommates of their own choosing.
- Stability: Residents can stay in supported housing as long as they wish.
- Satisfaction: Tsemberis (2003) reported that residents of supported housing, when compared with residents of supportive housing and community residences, were the most satisfied overall with their situations
- Lack of relationships (?): One problem cited by residents in supported housing is the potential for loneliness and isolation, because there is no "ready-made community", such as what exists in clubhouses or group homes. Residents do, however, often find creative ways to overcome this.
Supportive housing - cooperatives or group homes in the community. More structured that Supported housing. There are generally scheduled group activities, and the management of the facility is in contact with treament personnel for the residents.
Some characteristics supportive housing
- Support: Services are available through specially-trained staff
- Relationships: Required group activities foster the maintenance of social relationships between residents.
- Lack of choice: Residents have no say in who else lives in the home
Clubhouse - the participants are called members, not patients and the focus is on their strengths not their illness. Work in the clubhouse, whether it is clerical, data input, meal preparation or reaching out to their fellow members, provides the core healing process. One of the most important steps members take toward greater independence is transitional employment, where they work in the community at real jobs. Members also receive help in securing housing, advancing their education obtaining good psychiatric and medical care and maintaining government benefits. Membership is for life so members have all the time they need to secure their new life in the community.
Some characteristics of clubhouses
- Support: Employment, housing, and other support services are made available for members as an essential part of this program
- Relationships: Opportunity for social interaction in the small community of residents who live together.
- Lack of choice: Residents have no say in who else shares the home
Group Homes - such as community care homes specifically for people with psychiatric disabilities, boarding houses, or halfway houses.
Some characteristics of group homes
- Support: Staff are available to assist residents, and they may have special training in dealing with mental illness or dual-diagnosis populations
- Relationships: The presence of other residents might foster social relations; however, a study of boarding house residents with psychiatric disabilities (Browne and Courtney, 2004) reported that boarding situations offer less opportunity for social support, when compared with residents in private home situations (independent living or with family).
- Lack of choice: Residents have no say in who they live with in the group home
- Less stability: May be a time-limit on how long residents can stay
Section 8 (Government-subsidized) Housing - these are housing units in a community that have been specially designated for the elderly or the disabled. Rent is highly subsidized by federal funds. According to SAMHSA,
"a person pays either 30 percent of his or her adjusted income, 10
percent of gross income, or the welfare assistance amount designated
for housing [varies from area to area]." The rest is paid to the landlord via a housing voucher or a certificate.
In order to live in section 8 housing, you must apply with your local State Housing Authority (usually listed under "housing authorities", or something similar, in the phonebook). There is usually a waiting list, so it is in your best interest to do this early, and explore other options in the meantime.
Some characteristics of section 8 housing
- Freedom of choice: Residents may live independently, or with roommates of their choosing
- Stability: Residents may stay as long as they wish
- Lack of relationships (?): No "ready-made community" to foster social relationships; potential for loneliness and isolation
- Lack of support: No support services offered through Section 8 housing - residents are responsible for finding the support they need through other means.
How to Find Housing Options in your Community:
It can be difficult to know what is available in your area for people with psychiatric disabilities. The following list of steps will help you connect with the resources available to you. These do not need to be followed in sequential order; depending on your situation, certain suggestions may or may not work for you. However, we encourage you to try as many as possible, in order to find the most options available to you.
Many of these steps are best pursued simultaneously - for example, making several phone calls to local mental health facilities, support groups, and public housing authorities will allow you to get your name on many different waiting lists for residential services. This will ultimately improve your chances of ending up with an option that works for you.
- Consider finding a case manager. A case manager will not only know what residential services are available for people with psychiatric disabilities, they can be an invaluable resource through the entire process of applying and qualifying for such services. They will also be an important source of support for the mentally ill client after they move into their new residential situation.
Places that may provide case-management services:
Contact a local support group, such as NAMI or DBSA. Ask the staff about residential facilities for people with mental illness, and ask local members about their experiences with various programs (our support groups page has contacts for national and international mental illness organizations).
Call State or Local Public Housing Authorities (look under county/city offices in the government pages of the phone book), find out about eligibility for Section 8 housing, and begin application process. Get your (or your loved ones) name on the waiting list first thing. In the United States, SAMHSA recommends that you get a referral to a local housing agency by calling the Housing Counseling Line of the U.S. Department of
Housing and Urban Development at 1-800-569-4287 or 1-888-466-3487.
- HMOs and managed care groups
- Health insurance companies
- Behavioral health clinics
- Government agencies in charge of mental health or medical care (in the U.S., start at the county level)
- Private charitable organizations for the disabled, such as Easter Seals
- Special school-based programs that arrange for "wraparound" services in addition to educational planning
(NOTE: qualifying for SSI/SSDI may also automatically qualify you for Section 8 housing).
Call local community health clinic (may be in the phonebook under Health Services, or you can look up mental health facilities near you using this U.S. government database) and ask about local housing set aside for low-income or disabled persons
Look in the newspaper for "shared housing" ads - these can be viable options for someone who has the capacity to live fairly independently, but has a low income
Search Housing and Urban Development's Low-Income Housing Database. This database is searchable by U.S. state, and is updated annually with all available low-income rentals that serve the elderly and/or people with disabilities. The database does not give information regarding
eligibility and waiting list information, unit availability, tenant selection preferences, or types of accessible features for these properties - these will vary by state and by facility.
Search the International Directory of Centers for Independent Living (CIL). According to the website, CIL's are "private,
nonprofit corporations that provide services to maximize the independence
of individuals with disabilities and the accessibility of the communities
they live in." Although it is not explicitly stated, the description of services provided by CIL's (independent living skills training, peer counseling, information and referrals) sound like they fit with the supported housing model.
Search the International Directory of Clubhouses, provided by the International Center for Clubhouse Development.
Attend public land auctions - these are government auctions. The government auctions off land land and/or homes that have not had taxes paid on them for a certain period of time. Our members report that they can go for prices that low-income families can afford.
More database resources and housing/residential program information for people with psychiatric disabilities:
- United States:
- Housing and Urban Development - information for people with disabilities
- Information about PATH (Projects for Assistance in Transition from Homelessness) - federal grants distributed to eligible states and territories, used to develop specific services such as outreach,
sreening and diagnosis, rehabilitation, community mental health
treatment, alcohol and/or drug treatment, case management, limited
housing assistance, and referrals to other services, job training, and
education. Check with local housing authorities or mental health facilities to see if there are PATH-funded services in your area.
- NMHA Information on Federal Funding Programs for People at Risk for Homelessness
- United Kingdom:
- Supported Housing Across the U.K. - a searchable database provided by the mental health charity Rethink
- Supported Housing and Residential Programs - information and contacts provided by the mental health charity Mind
- Together Mental Health Charity - "
Together was the first charity to provide housing in the community for
people with mental-health problems [in the UK] over 100 years ago. Today we run
supported independent flats and shared houses where people live
independently, backed up by regular visits from our professional