ILRC Focus Groups Housing-2008 A report of the findings and recommendations of a consumer focus group on the challenges facing people with disabilities. April 9, 2008 Thank you to all who contributed in any way to the production of this report. A special thank you to Michelle Murdoch who took the time to review all of the notes from the focus group sessions and compiled this report for the Independent Living Resource Centre. ------------------ The Black Spruce, is an emblem of strength, which thrives even when the odds weigh heavily against it. Like the Black Spruce the ILRC gains strength with each new consumer and each new barrier that is removed. We know that each time we share our voice and our experience; each time we speak up and challenge inequity; each time we make our own choice, we grow in strength because we are living the Independent Living Philosophy. ------------------ The Independent Living Resource Centre or ILRC is a resource centre designed by and for people with disabilities. We are... * Located in St. John's, Newfoundland & Labrador, Canada * A not-for-profit community based organization * Managed by a consumer controlled volunteer board of directors * Open to people who have any type(s) of disability * A member of Independent Living Canada (ILC) (previously the Canadian Association of Independent Living Centres, CAILC.) As well, we offer a wide range of disability related information, services and resources. Our goal is to support people in making informed decisions about their lives. Independent Living is about: * Having choices * Making informed decisions * Finding solutions that work for you * Choosing where and how you want to live * Taking risks * Taking responsibility * Managing your resources * Controlling your own supports * Learning from each other A consumer is a person with a disability. Instead of being "patients" or "clients" we see ourselves as active and informed consumers of products, programs and services. Focus groups, initiated by the ILRC, took place on February 18th & 25th, 2008 with 26 people in attendance on February 18th and 25 people in attendance on February 25th. The following is a summary of these meetings as reported by the consumers who attended the focus group sessions. Following completion of a draft document, we met again on April 9th to review the contents of the report and make final revisions. ------------------ Findings Adequate and accessible housing is a basic human need. For women, men and children with disabilities this basic need is complicated by four primary barriers which are: a lack of adequate infrastructure to support people with a wide variety of disabilities, financial inequities, attitudinal barriers, and communication issues. These four contributing factors enhance the feelings of isolation and segregation reported by many people with disabilities. Feelings of isolation contribute to a sense of worthlessness and hopelessness; traits frequently described by those who live within the cycle of poverty. There is a lack of adequate infrastructure to support people with a wide variety of disabilities. A. There is simply not enough accessible housing available in the St John’s metropolitan area. - Wait times for accessible housing ranges from 1-3 years. - Because of the lack of availability and long wait times consumers report ‘settling’ for less desirable housing because there is simply no choice. - Safety cannot always be the priority, sometimes it has to be just getting somewhere (anywhere) to live. B. Consumers report increased feelings of isolation and disconnection with their communities. - Lack of accessible housing demands people with disabilities leave their preferred communities. - Lack of accessible housing demands people with disabilities leave their preferred peer groups. - Most new housing developments are not accessible both physically and financially. It seems creating a more integrated society is not encouraged or rewarded within government policy. People with disabilities do not have an income that adequately supports their individual/family need. A. Lack of adequate income is a substantial barrier for people with disabilities. This is because people are required to spend up to (and sometimes more than) 30% extra to have their disability related housing needs met. These needs are not being met through the publicly funded housing because of long wait periods and limited accessible housing. B. Accessible housing costs are usually beyond the government estimation that rent should be 30% of one’s income. C. Lack of adequate individual or family income means budgets are consumed primarily on (high) rent and home support services and as a result bills and groceries have to be much less of a priority. D. Calculations of disability related supports and higher accessible housing costs are not considered when government financial support is calculated. E. Snow clearing and accessibility is a serious issue in this province. There needs to be an investigation into the best practices of managing snow clearing and accessibility in other provinces. Attitudinal barriers significantly impact the lives of people with disabilities. A. Consumers report varying attitudes within government services that create the perception of inconsistent government practices. In turn this generates a general sense of uncertainty for consumers and builds on other forms of marginalization that contributes to a sense of helplessness and lack of control. B. There are generally a lot of assumptions as to “what” a person with a disability should look like, what support is necessary for a particular disability. It is unclear who writes this disability handbook. C. Discrepancies occur between what consumers feel they need and what those making assessments feel the person needs. Primarily, for consumers with an invisible disability, such as mental health issues, this discrepancy becomes problematic because the reported consumer need is more likely to be perceived as subjective in nature. We call this the power of “paid strangers’ to control our lives. D. People with disabilities are still struggling against discrimination and prejudice. Some may prefer to live in a bed-sitting room, but are denied because of the stigma attached to many disabilities. Landlords presume people with disabilities will not leave the premises as much as (landlord) desired, therefore, landlords state they prefer students or working boarders. E. Renovations are considered a luxury by Landlords; this includes clean flooring and painting. The general public has little idea of the circumstances some people are forced to live within (no working stove or fridge, unclean surroundings- before moving in). F. Complaints to the Landlord can be met with responses such as you will have to move out for me to make necessary repairs. For those receiving government support it is not possible to pay to live in two places at once. G. It is good that when someone owns a house and acquires a disability that HRLE will continue to pay the mortgage. However, it seems discriminatory that if someone is born with a disability HRLE will only contribute to rent; mortgage is never an option. H. Consumers on a long term disability pension report difficulty receiving a mortgage. Poor communications across government systems complicates receipt of services for people with disabilities A. General government bureaucracy slows down processes to the point that attaining government assistance within a quickly moving rental market is impossible. B. Bureaucracy makes it difficult to change housing. For example if one uses government support systems a bill is required by HRLE to pay for moving expenses however consumers require HRLE money to pay the expenses to get the bill. C. Moving housing even for more accessible surroundings is not well supported by HRLE. When asked why an individual wants to move words such as ‘human rights’, ‘dignity’, ‘choice’ are not well received by staff. A clear and well-articulated explanation and justification must be made for the move to be supported. For people with some types of disabilities this level of articulation is, at times, difficult to achieve. D. Government policy often creates disincentives for individuals who want to live with a roommate or their family. E. Lack of communication between government departments makes it difficult for consumers reliant on government services to have their housing needs met. Cross department communication results in prolonged wait times for housing arrangements. For example, this is problematic when the individual is seeking funding for private housing wherein Landlords are usually unwilling to wait drawn out periods for funding arrangements. People with Disabilities know the above barriers can be addressed resulting in change. They wish to be part of this change and offer the following as some solutions to end the discrimination. ------------------ Recommendations 1. Develop a comprehensive review of the present state of affordable and accessible housing in this province. 2. Acquire a comprehensive provincial housing initiative that enables persons with disabilities to live independently. - Incorporate universal design in all new provincial housing initiatives. - Provide incentives to private sector that offer affordable housing at cost. - Encourage generally the concept of universal (accessible) design. - Acknowledge there is a wide range of ages in the ‘category’ of disability and socially it is essential persons with disabilities are given opportunity to live in proximity of others their own age. For example, youth should not be forced into senior’s complexes in an effort to gain accessible housing and support. 3. Advance a system through which persons with disabilities can become home owners. - View home ownership as an achievement rather than a privilege that is unattainable to many persons with disabilities. Habitat for Humanity claims home ownership is one step towards eradicating the cycle of poverty. - Create a provincial system whereby there is a ‘rent to own’ program or some sort of innovative system for people on low incomes to change long term rent to mortgage. ‘Habitat for Humanity’ is one example of a best practice for a not for profit affordable housing arrangement. - Lobby the federal government and business to remove discriminatory banking processes, such as unwillingness to finance an individual receiving disability pensions. 4. View housing renovations or in some cases raising a very low housing standard, as a necessity rather than a luxury. 5. Offer informational sessions about the Residential Tenancies Division. 6. Seek input from consumers of public/private housing in the design of accessible housing. Too often people with disabilities are left out of the decision making process, and are only considered as an after thought. 7. Develop a comprehensive employment strategy directed specifically towards persons with disabilities. Access to adequate sources of continuous income is what is essential to provide a good standard of living which will open the gate so that persons with disabilities can leave government support systems. 8. Separate costs of disability related supports from calculations of basic income. 9. Create a system that enables interaction between government agencies so that issues such as housing are dealt with in a quick and efficient manner. 10. Diminish attitudinal barriers towards persons with disabilities through government and public education. Utilize cross disability organizations as part of the information process. 11. Promote a greater understanding of Independent Living. When offered adequate support everyone can live independently. A broader vision of the need for independence must be developed by social agencies so that women and men can be supported to live alone, if they so choose. 12. Recognize the importance of living within one’s peer group. Often persons with disabilities are not seen for the varied and diverse group we are. There should be a variety of accessible living arrangements that speak to this diversity and individuality. 13. Improve communications and deconstruct attitudinal barriers within government departments.