Question: What do we all want in housing?
Answer: A safe, comfortable home in an aesthetically pleasing environment.
Question: How is it that housing, let alone housing of this quality will escape most disabled Americans?
Answer: This editorial will attempt to define not only
but will also explore
and, most importantly
Acquiring a place to live requires a lot of planning, paperwork, patience and perseverance. Finding a place to live, the search itself, is difficult. In addition, there is much more to acquiring housing than the search. There may be legal, financial and construction issues to overcome. To understand the process one may need education or consultation. All of this takes a great deal of effort for anyone.
However, when one is disabled there may be additional, overwhelming barriers to
Depending on one's disability and ability to work, some of these issues may be:
When we add these additional barriers, the quest for housing for the disabled individual and their family can be incredibly frustrating or often seemingly unattainable.
The California State Independent Living Council (SILC) recently conducted a study on the impact of housing availability, accessibility and affordability on people with disabilities. According to the study, "more than any other population group, people with disabilities are more likely to experience acute housing problems: problems of stigma and discrimination, affordability and access to safe and decent housing. The study found that 21.0% of the population of people with disabilities are unable to work. For those that are able to find a fitting job, the per capita income among people with disabilities is only 59.7% of that of the general population. These people are forced to find housing that will fit their budget, while fitting their accessibility needs." ("Help for the Disabled Renter" by Kate Kemp, 2000 Realty Times)
For people with disabilities acute housing problems create social stigma and a lack of community affiliation and membership. "A lack of personal financial resources and systemic dependence on programs that limit personal choices are two major barriers that deny basic opportunities and civil rights." ("Origin of the Alliance," National Home of Your Own Alliance)
In addition to financial and accessibility concerns, there are more factors contributing to the housing crisis for people with disabilities. Manifestly, there is a lack of available, accessible or affordable housing for people with disabilities, which this article will discuss.
It would be difficult to look at the housing crisis and the availability, accessibility and affordability of housing without recognizing the various options in housing available to the disabled. See the NHU Guide to Searching for Appropriate Housing Options for a complete guide on housing options. This guide provides an outline of several housing options and discusses the feasibility of each relative to the individual level of independent living. This guide helps you to assess your needs for housing, determine your abilities to live independently and evaluate what housing option may be best for you. The main housing options as outlined in this guide that are available to people with disabilities are Nursing Homes, Group Homes, Assisted Living Facilities, Apartment Rental and Home Ownership.
People with disabilities are often turned away from housing choices due to discrimination. "People are unaware of their rights to housing. There are laws to protect people with disabilities from housing discrimination." The laws are complicated. Locating and understanding the laws can be difficult for people with disabilities. ("Housing & Independence: How Innovative CILS are Breaking Down Barriers to Housing for People with Disabilities" by Kay Benecke, April, 1999)
Recent news articles in the Milwaukee Journal Sentinel have reported that the nursing home industry is barely holding on in the State of Wisconsin. Although, there is an 85% occupancy rate overall in nursing homes throughout the state, in some areas of the state nursing homes are full to capacity and there are no beds. This is caused by the fact that 20 nursing homes have closed and many more are in danger of closing. With the recent closure of many nursing homes, people have been forced to move to other facilities.
The articles identify that the causes for nursing home closings are finance capacity, patient health and work force stability. Nursing homes are not being reimbursed for what they are spending on Medicaid patients. See Housing Affordability below for more information on the state of financial capacity. In addition, hospitals do not hold patients as long as they used to and many people who are able are moving to assisted living as it offers more independence, though less care. This leaves the most needy, sick and poor left to be cared for in nursing homes. For nursing homes this means more people with dementia, mental illness, aggressive behavior and limited mobility who need a higher degree of skilled care. The skilled nurse care and other care personnel have demanding work and low pay. There is a 70% turnover rate in the employment of care personnel. Care issues that cause loss of human life or abuse are being reported and many nursing homes are facing careful scrutiny by the state.
Many people with disabilities in the 18-55 age range would prefer not going to a nursing home. Ideally people would prefer to live at home or independently rather than living in a nursing home. The number of disabled is growing due to medical advances that save lives that long ago would have been lost. Families need more support in helping their disabled family member live at home or independently. Families now live farther apart. Relatives can be overwhelmed by providing care. Families would prefer the option of obtaining help with care and services so their disabled family member may remain in their home. If this is not possible, they seek public funded slots for assisted living. This option is not readily available however and often people are left on waiting lists. Without support and without options, families will be forced to take the nursing home option.
People with disabilities and their families use a nursing home as a fall back when all other types of facilities have been ruled out. With the recent state closings, lack of Medicaid funding and lack of quality care, families will not be able to rely on a nursing home as a housing option.
Most nursing homes serve the elderly and do not always have programs for the disabled younger adult. This leaves only a few facilities available for people with disabilities in the 18-55 age range.
Neighborhoods may be unwelcoming and discriminatory toward people with disabilities moving into their area.
Assisted Living Facilities
Although this option would be the choice of many disabled who wish to remain as independent as possible, assisted living facilities are also priced beyond the paying ability of most people with disabilities and their families. Many people must seek public financial assistance for assisted living. People are often placed on waiting lists which require a wait of 8 years just to be assessed. The government allocates funds to nursing homes rather than community based assisted living facilities. Families with money can avoid the waiting list. However, there are few assisted living facilities for the disabled across the United States. Many facilities are deemed "senior only" by local housing authorities and owners.
If one must seek subsidized housing, one will soon realize that local housing authorities have the power to make this housing "elderly only." This trend has limited a sufficient supply of this type of housing for the disabled.
People with low income must look for housing that has been classified as U.S. Department of Housing and Urban Development housing. Many times homes are located in areas of high crime rate or undesirable neighborhoods. Neighborhoods may be unwelcoming and discriminatory toward people with disabilities.
The housing industry has not kept up with providing accessible housing. The burden of modifying an apartment or home is on the disabled individual. Accessible housing is not available in any housing: single and multi family dwellings, old and new, lease or sale private or government funded housing. "Developers, landlords, leasing agents may be unaware of their legal responsibilities to provide accessible housing. Their misconceptions about people with disabilities often lead to fear and unreasonable concerns about social and economic liability." ("Housing & Independence: How Innovative CILS are Breaking Down Barriers to Housing for People with Disabilities" by Kay Benecke, April, 1999)
In addition, people with disabilities do not realize that they can negotiate with landlords, financial lenders and housing authorities on accessibility and financial issues.
Local housing authorities must enforce accessibility standards as described by the law. However housing authorities do not necessarily have a plan to include accessibility standards or enforce them. Local building authorities can adapt accessibility standards for their community that can make housing accessible for people with disabilities.
To begin, people with disabilities may be the poorest of people. People with disabilities are often unemployed or under employed, or live with fixed or capped incomes. Many live with over 50% of their monthly incomes going to personal assistance, medical expenses and exceptional daily living needs. "Three and a half million adults with disabilities receive federal Supplemental Security Income (SSI) benefits - equal to a monthly income of $512 in 2000." ("Housing Crisis Continues Findings from Priced Out in 2000" by Marie Herb, Emily Miller, Ann O'Hara, Opening Doors, June 2000, Issue 14)
Nursing homes are not being reimbursed for what they are spending on Medicaid patients. In the state of Wisconsin of the 39,000 people with disabilities in nursing homes, 70% are on Medicaid. Because hospitals do not hold patients as long and many people are opting for other kinds of housing, nursing homes are filling with many patients who require the most costly of care. 76% of nursing homes in Wisconsin do not have their costs fully reimbursed by Medicaid. Residents who do not qualify for public assistance are charged a higher rate to make up for the Medicaid shortfall. Unable to survive, nursing homes businesses are closing their homes or expanding their businesses to include apartment houses and assisted living facilities. The government allocates funds to nursing homes rather than community based assisted living facilities. Families without money are forced into the nursing home, often before the family member with the disability is in need of nursing home care. Financial need will determine housing option without regard to care needs.
Assisted Living Facilities
"In addition to licensing regulations, the main reason for the lack of assisted living facilities for the disabled appears to fall on the lack of funding. In general, there is very little governmental funding available for assisted living facilities. For the elderly there are some state and local subsidies and a few subsidies through SSI and Medicaid. Ninety percent of assisted living services are paid through private funds. The other is paid by SSI, Social Security Block Grants, and other programs. Due to the lack of governmental funding, many elderly are asked to leave or are removed from assisted living facilities when their private funds are depleted and they have to resort to Medicaid. Since the majority of disabled pay for their care through governmental funds, assisted living does not appear as an option for many of them." For more information on the lack of assisted living facilities for the disabled, see the NHU editorial Assisted Living for the Disabled.
Rental housing has become an expensive housing option as well. HUD recently reported that rent prices increased more than twice the rate of national inflation in both 1997 and 1998. In 2001, HUD reported that their housing research identified very low-income households with adults with disabilities as a segment of the population having one of the worst housing needs of any group in the United States. Lower-income families are being continually priced out of the nation's safe and affordable rental market. In "Priced Out in 1998", the CCD Housing Task Force reported that there is not a single housing market in the United States, where a person with a disability receiving SSI benefits can afford to rent a modest efficiency apartment and nowhere can an SSI recipient rent a one-bedroom apartment for less than 50% of his or her income.
In "Priced Out in 2000: The Crisis Continues" the Technical Assistance Collaborative, Inc. (TAC) and the Consortium for Citizens with Disabilities (CCD) examined the affordebility of efficiency and one-bedroom housing units for people with disabilities in all 50 states and within each of the 2,703 distinct housing market areas of the country defined by the federal government. This report found that people with disabilities have lost buying power in the last two years and remain the low-income group with the highest unmet need for housing assistance.
The highlights of "Priced Out in 2000" have been briefly listed here. The report illustrates how extremely poor people who receive SSI benefits are and their inability to afford rental housing in housing markets throughout the United States and how this housing crisis is getting worse each year. For the complete report, visit the Technical Assistance Collaborative.
"Like other low-income elderly and family households, people with disabilities must rely on government housing programs to help them obtain affordable housing. Yet, recent HUD dates indicate that people with disabilities represent a disproportionately small share of households assisted by federally subsidized housing programs relative to their need. The demand for federal housing assistance for people with disabilities is also certain to increase in the years ahead"... ("Housing Crisis Continues Findings from Priced Out in 2000" by Marie Herb, Emily Miller, Ann O'Hara, Opening Doors, June 2001, issue 14)
For people with disabilities, the National Home of Your Own Alliance reports that "less than 5% of all people with disabilities who receive supplemental security income benefits own their own homes..."
A 1998 national Louis Harris poll, commissioned by the National Organization on Disability, found that "34% of people with disabilities have annual household incomes of $15,000 or less."("Owning a home of your own, Expanding Our Thinking on Housing Choice" by Charlene Dwyer and Jerry Vogt, EBTIDE Inc., Advocacy Action News, June 2001, Issue 44, Independence First). People with disabilities have too low of income to save for a down payment or afford monthly house payments. People with disabilities also lack credit history to qualify for a mortgage loan.
What can be done about the housing crisis? Let's look at the three issues:
People need to be aware of their legal rights and responsibilities. A campaign to educate and train should be directed to all groups involved in housing for the disabled, people with disabilities and their families, disability advocacy groups, service providers, housing authorities, lenders, etc.
Evaluating housing and filing complaints with HUD, the Idaho State Independent Living Council, Idaho Coalition of Independent Living Centers and the Idaho Legal Aid and Idaho Fair Housing Council with funds from HUD have formed a Fair Housing Initiative Program for the state of Idaho to educate consumers, managers, landlords on information. In addition, they have developed a fair housing advocacy training program. For more information on forming a Fair Housing Initiative Program in your state, contact the State of Idaho Independent Living Council.
People with disabilities need to be aware of a better range of housing options available to them. This may require more innovative support in the area of family support and the option to live independently as long as possible. As educated consumers, people will be better equipped to negotiate for their needs in the market. Advocacy for the disabled concerning housing should not be directed only at managers, landlords, housing authorities and builders, but service providers, assessment agencies and legislators.
Once considered a threat to the value and marketability of a home or an apartment, accessible improvements for people with disabilities constructed with universal design techniques can now offer an asset to any residence. Universal Design offers items to be more permanent. Changes can be looked upon more as safety features rather than obstructions. These accessible modifications can simplify life for all, not just people with disabilities. Organizations are pressing for "visitability" in construction which advocates working with local building authorities to adapt accessible building codes. If local building authorities adapt accessible codes, future housing will be designed with accessibility features.
The U.S. Department of Housing and Urban Development offers several resources on accessibility: accessible housing designs, modification funds, accessibility guidelines and accessibility analysis of model building codes.
Public Housing Authorities in various states are offering accessibility funding to make homes more accessible. Seek funding or help for such modifications before you make an offer on a house. Local Centers for Independent Living and other disability organizations are providing information on your rights to accessible housing. They also offer how to negotiate with landlords, sellers, mortgage lenders, on accessibility issues. Organizations may also offer programs that help with construction.
Yet, as a nation, we are further from that ideal today than we ever have been. As the Technical Assistance Collaborative and the Consortium for Citizens with Disabilities Housing Task Force demonstrate so clearly in this edition of Priced Out in 2000, the ability of people whose disabilities prevent their full participation in the work force, and who thus rely on SSI or Social Security to compete in today's housing market, is virtually non-existent without additional assistance....The housing crisis is caused by an insufficient supply and range of housing options for low-income members of a community. Poor people with disabilities are the most vulnerable to housing instability in this kind of housing market, and thus are over represented in among homeless people.
In the quarter century.....we have gained a much better understanding of disability issues and developed innovations in the services and supports that people may want or need. We have made much less progress in housing low-income people. The affordable housing crisis is not an unsolvable problem. Unprecedented federal budget surpluses mute the longstanding argument that the United States cannot afford to provide low-income housing. We have learned a great deal about how to best design homes and communities that afford dignity and opportunity to the people who live in them. We have a cadre of community based entities that stand ready to develop and operate safe, affordable, quality housing. We have mediation and legal tools to overcome community opposition to the development of affordable housing. What we need is public will and political courage."
Individuals, advocates, CIL's and innovative service providers are advocating and providing innovative programs to move the disabled from institutions and group homes to person-owned/controlled housing and personalized support services. This effort is allowing people to move from traditional, agency-controlled services to housing and support resources that offer independence and community inclusion. ("Origin of the Alliance," National Home of Your Own Alliance)
HUD had provided Section 8 funds to help people with disabilities live in community based housing by providing rental vouchers so people can get up to 70% of their monthly rent, skills training and other support, like home modifications.
In response to the housing situation, federal and state legislation, HUD initiatives, CIL advocacy teams and housing initiatives, are making it possible for people with disabilities and their families to own a home of their own. For a complete look at the new legislation and rulings that are making this possible, see the NHU editorial New Legislation Makes It Easier for Home Ownership to be a Housing Option for People with Disabilities
"HUD is increasing Section 8 vouchers of those who are disabled and the Home-and-Community based waiver (HCBW) eligible to home mortgage payment programs subsidized with vouchers. HUD makes the program available. State and public housing authorities, people with disabilities, advocates and service organizations, and CIL's are assigning staff to work one on one with a prospective homeowner." ("Owning a home of your own, Expanding Our Thinking on Housing Choice" by Charlene Dwyer and Jerry Vogt, EBTIDE Inc., Advocacy Action News, June 2001, Issue 44, Independence First)
Government agencies and service providers are assessing and making decisions for the disabled. Until people with disabilities are included in the creation of housing and support options, they will continue to be denied basic opportunities, rights, ownership and control of their housing choice.
Here is what you can do:
Milwaukee Journal Sentinel, "Overwhelmed and Broken Down: Caring for the Elderly and Disabled"
"Origin of the Alliance," National Home of Your Own Alliance
"Housing Crisis Continues Findings from Priced Out in 2000" by Marie Herb, Emily Miller, Ann O'Hara, Opening Doors, June 2001, issue 14
"Housing & Independence: How Innovative CILS are Breaking Down
Barriers to Housing for People with Disabilities" by Kay Benecke, April, 1999
"Owning a home of your own, Expanding Our Thinking on Housing Choice" by Charlene Dwyer and Jerry Vogt, EBTIDE Inc., Advocacy Action News, June 2001, Issue 44, Independence First
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