Independant Living Resource Centre Voices of the people A report of the findings arising from a series of consumer focus group discussions held across Newfoundland and Labrador regarding the issues and barriers faced by people with disabilities. Table of Contents Acknowledgements -- Page 2 The Independent Living Resource Centre -- Page 4 Preamble -- Page 6 Introduction -- Page 7 General Findings -- Page 9 Issue Specific Findings -- Page 13 Housing -Page 13 Transportation -- Page 17 Accessibility -- Page 23 Home Supports -- Page 25 Education -- Page 32 Employment -- Page 36 Income Support and Financial Issues -- Page 38 Disability Related Supports -- Page 40 Geographic Differences -- Page 41 Key Messages to Government -- Page 42 Summary -- Page 45 Letter of Support -- Page 47 Acknowledgments This research was possible due to funding received from the Provincial Department of Human Resources Labour and Employment through the _Poverty Reduction Strategy. It is part of a three-year commitment of funding for the Independent Living Resource Centre's IL (Independent Living) Internship Program. Thank you to the province for funding this work. The staff and Board of Directors of the Independent Living Resource Centre, and people with disabilities throughout our wonderful province who gave generous in-kind support. Don Gallant, of Don Gallant and Associates, Kathy Hawkins, IL Internship Coordinator and Donna Greene Adaptive Technology Coordinator have greatly contributed to this report. In particular, we want to acknowledge the contributions of the following people: Participants: The ILRC involved 275 people in our Town Hall Meetings and we want to thank all of the people who attended our meetings for adding their voice to Voices of the People Photography: Robert Lamb, Donna Greene, and Kathy Hawkins Graphics Artist: Shivam Aggarwal Writers: Don Gallant, Barry Galloway, Kathy Hawkins, Donna Greene Synthesis of information: Don Gallant, Barry Galloway, Michelle Murdoch, Alternate Formats: Donna Greene, Adaptive Technology Youth Interns Publisher: Independent Living Resource Centre -- St. John's, NL Principal Investigator: Independent Living Resource Centre -- St. John's, NL Barry Galloway, Executive Director For more information contact: Barry Galloway c/o ILRC 4 Escasoni Place, St. John's, NL A1A 3R6 Tel: (709) 722-4031 Fax: (709) 722-0147 TTY: (709) 722-7998 Toll Free:(866) 722-4031 Email: barry@ilrc.nf.ca The Independent Living Resource Centre The Independent Living Resource Centre (ILRC) is a resource centre designed by and for people with disabilities. We are - Located in St. John's, Newfoundland and 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 (IL Canada) We are part of the Independent Living movement in Canada and are among the 28 Independent Living Centres under the umbrella organization Independent Living Canada. 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 We use the term consumer when speaking of a person with a disability. Instead of being "patients" or "clients" we see ourselves as active and informed consumers of products, programs and services. Preamble The Independent Living Internship Program provides increased inclusion of people with disabilities in their communities. Commencing in December 2007, Interns in various areas throughout the province are engaging within their communities to promote an understanding and awareness of disabilities. Through program activities, Interns identify appropriate resources for individuals with disabilities to acquire full community independence as well as provide information and resources through several community consultations on Independent Living philosophies, how to be more active within communities, disability etiquette and inclusion, to name a few. The ILRC provides a commitment to staying in touch with the community. Partnerships are formed with individuals, organizations, governments, schools, universities and businesses. By working together, gaps in service can be determined and solutions developed. Research that recognizes persons with disabilities as experts is important in determining what works and what does not. Consumer tested and validated information is the key to developing programs and services that benefit the whole community. Barry Galloway Executive Director Introduction The following report represents a summary and synthesis of consumer comments arising from a series of discussions facilitated by the Independent Living Resource Centre. These public forums took place across Newfoundland and Labrador during May -- June 2008. In addition to these meetings the ILRC St. John's held public meetings during April -- June, 2008 in St. John's, specific to the issues of Home Supports, Transportation, and Housing. This report synthesizes and presents the findings arising from consumer discussions and comments from all these sessions. Public Forums were held in seven communities across the province with specific locations being St. John's, Carbonear, Clarenville, Grand Falls-Windsor, Corner Brook, Stephenville and Happy Valley-Goose Bay. Throughout the full collection of public forums we had opportunity to talk with more than two hundred and seventy-five consumers regarding issues facing them within their local communities. Format of Public Forums The simple intent of these meetings was to provide a public space for consumers to identify and discuss those issues of greatest importance to them, and in so doing assist the ILRC in ensuring that its future actions and activities are based on these identified priorities. All meetings were open to anyone identifying as having any type(s) of disability -- physical, sensory, intellectual, psychological and invisible barriers. Each session began with a brief overview and description of the various supports and services offered by the ILRC, the IL philosophy, and a brief presentation on the ILRC's Adaptive Technology (AT) and Internship programs (both of which are provincial in scope). With the exception of those sessions specifically designed to address particular issues, each public forum introduced the major service issues as previously identified by consumers and solicited audience feedback on each. These issues included Housing, Transportation, Accessibility, Home Supports, Education, Employment, Disability-Related Supports, Financial, and Income Supports. Participants in each session were asked to confirm the continuing relevance of these issues and then were given an opportunity to speak to the issues that were of greatest priority to them. General Findings Feedback provided by consumers throughout the province affirmed that the issues facing people with disabilities have remained relatively unchanged since identified in previous consultations. Without exception, the list as presented by the ILRC was considered by consumers to represent the major issues/challenges that continue to make full community living for many people with disabilities a daily and constant struggle. An analysis of the proceedings of each of the community sessions did however reveal that three (3) issues emerge as having greatest priority for the majority of consumers, namely Housing, Transportation and Accessibility. Prior to providing a more detailed summary of issue-specific discussion, there is value to noting some of the general themes that were dominant in all sessions. These include the following: - Consumers were unanimous in their assertion that access to disability related supports should be a right of citizenship -- not linked to level of income. - Supports need to be individualized. "I wasn't a wife -- I became a care-taker" - There is still a lack of accessible and available information as to the services and supports that do exist at the community and government level and how to avail of them. - At the community level, there is confusion as to mandate of various disability organizations. - No real systemic advocacy exists in many communities, and most communities (and individuals and families) lack the capacity to mount any substantive efforts toward affecting needed systems change. - Few peer support programs exist. - Families are `burned out` as a result of prolonged efforts to support their sons and daughters in the absence of needed supports and services. Many families have become the primary (often times exclusive) care providers. - The relationship with service providers, especially government agencies such as HRLE and HCS, varies from region to region -- consumers report as being able to obtain services in one area but not in another. - ILRC needs to do more outreach to consumers who reside outside St. John's. The need for an ILRC in other communities is recognized and the ILRC St. John's could play a pivotal facilitative role in the potential start up of these additional centres. Throughout the sessions there was much frustration expressed that, despite countless consumer consultations and feedback provided to government and community based service providers, the challenges facing people with disabilities remain relatively unaddressed. The issues, and the noted inconsistencies, disincentives, inaccessibility of programs and services, funding inadequacies, etc, remain. The majority of consumers were of an opinion that, while acknowledging minor gains in some areas, the situation had not improved in the past 10 years, indeed there was a general concern that gains previously made were being slowly eroded. This situation was viewed as completely unacceptable, with consumers pointing out that during a period of unparalleled provincial prosperity they have not witnessed any substantive or comprehensive investments in the disability community. At each session notes were taken and a set of proceedings is available for each of the individual sessions. These reports were reviewed and analyzed in the preparation of this report. The remainder of this report will provide a summary of consumer comments as obtained during these public sessions. The ILRC on behalf of consumers and the larger disability community hopes that these sessions and this report serve as a catalyst for government and service providers to engage with us in a meaningful dialogue as to ways and means to address the identified challenges. _Issue _Specific _Findings The following section provides a summary of the major emerging themes still consumer feedback as related to each of the identified issues. Housing We know - Adequate and accessible housing is a basic human need. - People with a disability should have the same access to appropriate housing as any other member of the community. - People with disabilities must be provided with a wide range of options -- and choice within those options. - The current system is geared to accommodating people with disabilities within existing housing, rather than creating housing situations geared to their needs. - The current system which provides housing for adults outside their family home is geared to meeting the needs of the system rather than those of the individuals it is meant to serve. Too often, individuals are housed where space is available, rather than in residences suited to their specific needs. - Needed personal supports must be `de-linked` from physical residence. - Supports should be `tied` to the person rather than the residential program. - Supported Living means a safe and decent home of your own, choice, personalized assistance and support from others who care about and respect you. - The preferred housing option -- private accommodations with support services as required -- is primarily available to those individuals or families with the resources to purchase a home or apartment. We said "It took me what felt like forever to find an accessible house it was much more expensive than what I could really afford, but I had no other choice" - There are simply not enough accessible apartments still houses in this province. - Wait times for accessible housing can range 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 other choice. - Individuals are unable to find suitable housing to enable them to leave their parents' home. - In the absence of affordable housing people are being expected to live in shared or congregate care environments. "Where my daughter goes to school, there is no button for an automatic door -- the bathrooms are not so bad now but I had to fight for that" - Where accessible units do exist, they are often beyond the financial means of most consumers. - New housing starts do not usually give any consideration for the need for accessible units. - Housing renovations must be viewed as a necessity -- not a luxury. Enhancements must be introduced into the system such that additional financial support can be provided to individuals (or their families) that will enable necessary housing repairs still modifications. - Lack of accessible housing is forcing people with disabilities to leave their preferred communities. - Individualized living arrangements are ideal for many consumers but it is very difficult to get the necessary funding and the accessible housing. - People with disabilities do not want to live in residences or programs -- they want to live in homes...ddwiththe supports necessary to allow that to occur. - Government (at both the provincial and municipal levels) has failed to invest either adequate planning or resources into the issue of accessible, affordable housing. We recommend - Development of a comprehensive provincial housing initiative that enables people with disabilities to live independently. - Incorporating universal design in all new provincial housing initiatives. - Providing incentives to the private sector that will stimulate the building of additional affordable housing units. - Encouraging as a general practice the concept of universal (accessible) design. - Acknowledging there is a wide range of ages in the `category` of disability and socially it is essential that people 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. - Stimulate both the construction of additional accessible units and the availability of these units at a cost affordable to people with disabilities. - Advance a system through which people with disabilities can become home owners. - 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. Transportation WE know - The ability to travel, either local or long distance, is a crucial factor in the community, economic and social participation, and is the key to independent living. - Challenges to the effective delivery of accessible transportation are more pronounced in rural versus urban contexts. "The company that owned the bus said there was no demand for it -- the demand was there but the affordability was not!" - Mobility is a fundamental element which enables individuals to participate in the vast array of social, medical, educational, recreational and economic activities necessary for survival in today's complex society. - To successfully implement a comprehensive transportation system that meets the needs of the community, both provincial and municipal level commitment and investment is required. - Cost of transportation is a major expenditure for many individuals with disabilities. - Far too many people are relying on private transportation provided by parents, and friends. - Consumers have to be lifted in and out of vehicles. - Very few accessible public transportation systems exist in the province. - An inclusive, accessible transportation system would be: - Accessible to all citizens: - Safe and reliable; - Reasonable, equitable and affordable; - Available across all modes of transportation; - Physical and attitudinal barrier free; - Mindful of treating all passengers in a dignified and considerate manner; and - Free of unreasonable terms or conditions imposed on any passenger or group of passengers. We said - Accessible transportation is essential to our participation in all aspects of community life. Without it we cannot go to school, to work, to church...we are trapped in our homes. - People with disabilities need choices in transportation -- we cannot afford to always use taxis. - There are issues with all major provincial transportation agents -- DRL, airlines, ferries, etc. - Transportation is very much a municipal issue -- this discussion needs to begin within all our communities now! - In winter transportation becomes even more problematic and difficult. - All communities in this province need to increase the number of available accessible buses and taxis. Question: If a person is using a power chair, how would they get here tonight? Answer: They wouldn't! - Maybe we can make better use of the accessible school buses when they are not in use by the schools. - Consumers want and need choice and options -- these choices and options need to be developed and made available. Different options may be more appropriate in different areas. - An inadequate transportation system restricts, and in many ways defines, the life we can lead in the community. We recommend - _Increased _choice _through: _- Increased types of transportation services (e.g. para-transit, taxi and Metrobus) - Subsidize taxi service available in all communities - All Metrobus buses to have wheelchair capability - Competition for para-transit services -- increased competition will increase quality of service - System of vans as well as buses - Taxi and bus companies legislated to have at least one vehicle for para-transit - Legislation for taxis and buses to serve all citizens instead of offering separate 'special' systems - E-mail bookings for para-transit - Increased availability through: - Limiting the use of public para-transit system for medical reasons (within health authorities) - Limit the use of available accessible transportation by various Health Care Corporations -- their clients cannot take priority over others - Taking care to distinguish resident use vs. medical transport - Provide financial subsidies to current or potential operators - Introduce 24 hour para-transit system (in St. John's) - Increased safety through: As Newfoundlanders and Labradorians we pride ourselves on making people welcome -- a community where people cannot get around is not very welcoming - All vehicles to have air ride suspension - Proper cleaning, maintenance of para- transit vehicles - Privacy -- Cell phonessthead phones or electronic communication for drivers to address privacy issues - Increased sensitivity through: - Mandatory disability training still awareness for all providers in the transportation sector (e.g. dispatchers, drivers, airport personnel, bus company personnel, flight attendants, etc) - Increased affordability through: - Provision of a 10 ride pass or monthly pass or semester pass for para-transit use - Subsidy to providers so that cost of accessible transportation for people with disabilities is no more expensive that transportation for the general public - Increased consistency through: - Better record keeping on part of para-transit (timely delivery of invoices) and elimination of no pay, no transport policy - Increase accountability for quality service (e.g. elimination of changing times without notice) Accessibility We know - An unacceptable number of public buildings in this province are still inaccessible to people with disabilities, particularly those with mobility issues. - Accessibility is more than just putting a ramp to the front door. Full accessibility acknowledges the needs of all people with disabilities, not just those with mobility issues. __Next year my daughter's classroom will be on the second floor -- I was told that in the case of a fire, she would have to wait for the _firefighters - It is still common to see one automatic door for outside entrances but not inside -- government buildings are particularly guilty of this practice. - Very few public buildings are accessible for people who use a scooter. - For buildings where there are ramps, many times these are too steep and unsafe to use. - There are still too many examples of where the only accessible access to a building is via the `back door`. - Where accessibility issues are addressed, if at all, it appears that they are addressed to the minimum required - Many public buildings have ramps but no accessible bathroom facilities -- this is true of restaurants, libraries, even some hospitals. - There is little evidence of any attempt toward enforcement of accessibility standards. - Inaccessibility within many workplaces severely restricts employment opportunities for many people with disabilities. We said - Blue zone parking is never respected and because nobody enforces the permits for these spaces, people are tired of advocating on behalf of their family members for access to the blue zone parking. - More Blue Zones are needed. Here, you could be parked in a blue zone for a month and not get a ticket! - Slippery driveways/parking lots are a major issue (they get salted in the morning but not throughout the day). - People park in front of curb cuts and thus block access to the sidewalk. - Many people with disabilities simply cannot go outside in the winter. - In many communities there are no sidewalks (or they are not cleared) and people basically end up in the middle of the road. - Maybe we should assign grades to buildings to indicate how accessible they are. Home Supports We know - Providing home support is multifaceted and complex - Home support required by people with disabilities is perceived by consumers as different from, for example, `home care` required by people discharged from hospital. - Access to responsive high quality home support is one of the most important keys to independent living, and quality of life. - Home support services assist consumers in many aspects of their lives, including at home, in the workplace, and in the community to meet personal, employment, education, health, and social goals. - Access to home support enables consumers to set and pursue personal goals, is critical to enabling participation in everyday life, enables people to contribute to the workforce or obtain training necessary for employment, gives access to family life opportunities such as parenting, partnering, friendship and companionship, ensures the emotional health and physical safety for many consumers, and ultimately enables citizenship. - Criteria of quality home support include: - Consumer control -- i.e. choice of caregiver, control over schedule, and options regarding in type of service. - Positive relationship with home support worker and/or service provider agency -- i.e. respect for the individual as a person and as an expert in their own disability; respect for confidentiality and privacy; and compatibility of workers with the skills sets, behaviours and values of the consumer; __An assessment can be carried out and approved to help him go to a `home` but not to provide supports to live at _home - Well trained staff -- i.e. being able to take direction from the consumer as to the type, extent and level of care needed. - Adequate resources for home support services -- i.e. the provision of home support to the level indicated by individual needs not as a result of a financial testing for eligibility, or as a result of imposed service ceilings. Adequate resources also means that home support is not downloaded to informal support networks. Nor does the acquisition of home supports create unsustainable financial pressure on the individual. We said - There is a need to separate eligibility for home support services from eligibility for Income Support. - The inability to hire family members as home support workers is extremely problematic. comPrivacy is a big issue especially in smaller communities. - In most communities, especially the more rural areas, it is very difficult to recruit and retain home support workers. In particular it is extremely difficult to get home support workers on a part-time basis. __It took years for government to finally and correctly deinstitutionalize people, now it seems that government wants to take away that independence by not giving the supports needed to maintain that _independence - Too often, the spouse still family is expected to provide all the care -- often having to quit their job to provide this care. - Needs Assessments limit the type and duration of Home Supportive Service a person with disabilities can access with the assistance of government funds. The person who is `eligible` for government funded home support is limited by traditional needs assessment and this service often considers physical need only. - Self managed home support works well for some consumers - Finding and maintaining the mandatory third party payroll service can be problematic with self-managed home support. Many individuals and families require additional support with administrative issues. - We do not want paid strangers entering own personal space and our homes. Requests for home support occur only when it is essential. - There are long waiting lists for home support hours. These vary by region and there appears to be no standard across regions - The current assessment process involves the use of very intrusive assessments. - In many regions there is a complete inability to get 24 hour per day support - seen as a privilege rather than a right. - Consumers of mental health services feel excluded by rigid assessment criteria, and as one consumer explained, "My needs are as invisible as my disability". comAvailability of support services in rural areas decreases the sense that one has to move to urban areas to receive adequate support. - Does the situation really need to progress to the level of crisis before support is provided? - "One size fits all" is not a philosophy that can be applied to the provision of Home Support Services. - Training must involve community values and cannot only focus on medical models of providing care. - Low pay and insufficient still inadequate enough training negatively impact on the quality of home support available to consumers. - Consumers have different needs. We recommend - Government must recognize that for most people with a disability home support service is essential and often the only option between living within the community and institutionalization. Many consumers are afraid to speak out for fear of having their supports cut - That keeping people with disabilities out of institutional care is one goal of home support services. To maintain this focus, home support must be visualized using a wide lens of what constitutes support. - That people with all types of disability may require home support services at varying times in their lives. Level and extent of home supports must respond to changes in need. - That individualizing service is a key to promoting a flexible and responsive system. - Home support workers must be properly compensated for the services provided and have access to the Workplace Health and Safety Compensation. - Replace the current needs assessment with a process still instrument that will result in a truer reflection of the service required by consumers -- one which is person-centered and consumer informed. - Collaborate with the disability community in the development and delivery of necessary and appropriate training for home support workers. - Develop and promote templates for home support best practices from consumers that have success in self managed care, including practices as related to administration of funding and other issues related to fulfilling the role of employer. Education We know - Inclusive education is still considered an "add on" and is still extremely vulnerable in many school districts. - Acquiring literacy skills is a challenge for many adults with disabilities. - Many students with disabilities are leaving the secondary school system ill-prepared for employment and/or post secondary training due to inadequate attention to appropriate transition planning. There is resistance to creating modified programs for people with disabilities at the post secondary level - School systems appear to know very little about the supports and services and organizations that exist in the community. - Children with complex medical needs face additional challenges in accessing inclusive education. - Enrolment in post-secondary education is significantly lower for people with intellectual disabilities. We said - Retraining? Where do we go to get support and financial assistance? Often eligibility is linked to your status -- EI still HRLE. - Getting inclusive education for my daughter is a fight every year -- to get the student assistant time she needs (fight with school board, doctors, etc) and each year it is a new fight! - Our sons and daughters must have the opportunity to participate to their fullest potential in all classroom and school activities. __I have encouraged people to go on Income Support just so that they can access a service, such as funding to go back to _school - Many of the community colleges especially CNA are becoming more and more accommodating and accessible. - I had to keep my three other children out of school before the school finally agreed to accept my child with a disability. - Some colleges have Learning Resource Facilitators and access to necessary adaptive equipment. - Knowing where to get information about the various programs and services as related to post secondary options is still problematic. - The perceptions and attitudes of educational professionals towards Students with Disabilities often prevent appropriate accommodations. - Instructors sometimes see accommodations as "special treatment" that gives students with disabilities an unfair advantage. - Many programs require work-term placements from their students; however, there is no attempt to ensure that the agencies, organizations or businesses that offer a placement are accessible. - Students with disabilities do not always have an established support system within the educational institution of their choice. In these instances the students feel overwhelmed and alone. - Problems with attaining accessible housing, inaccessibility on campus and inflexible programs, have required some students with disabilities to attend multiple institutions in an effort to; find a more accessible environment; accommodate the changing nature of their disability; or simply find some way of achieving their academic goals. - Many students with disabilities do not have an income that adequately supports their learning goals. We recommend - The perceptions and attitudes of educational professionals towards people with Disabilities often prevent appropriate accommodations. We recommend a comprehensive review of systems and protocols within academic institutions that addresses policy impacting all people with disabilities and their equal participation in educational opportunities. - Educational program accommodations need organizational infrastructure if people with disabilities are to have full access to the education of their choice. - Accessibility is needed in housing, campus buildings, information, (including the provision of alternate formats) and in transportation if students are to be accommodated. - People with disabilities experience multiple financial barriers related to accessing learning opportunities. This must be addressed in an immediate way. Employment We know - That Canadians with disabilities work half as many weeks per year as others, are unemployed longer, and spend nearly three times as many weeks out of the labour force. - Successful employment is often linked to appropriate access to needed employment disability related supports. - Employment and good earnings result when people have the education, training, transportation, personal assistance and aids/devices they need. - For many people with disabilities, accessible transportation is needed to get to and from work -- without it employment is impossible. - Employer attitudes are still a major barrier. We said - There is not much incentive to go back to work if you lose your drug card. - While there have been positive changes to the policy regarding retention of drug cards there is still much confusion, and often consumers lose benefits while things get worked out. I like working, I want to work, but it is just simply not worth it to me financially - Work preparation programs are needed in many of the smaller communities so that people are not forced to move for training or work experience. - Going to work is about more than just a pay cheque -- it is about increases in your self confidence, self esteem, and level of community participation. - Often times the costs associated with going to work are more than you earn. - If the proper supports were in place many more people would be able to become employed...government would save money in the long run. __I was looking to go back to work but worried about losing my home _supports - In our current provincial economy there are plenty of jobs available but we need disability related supports, and access to appropriate training programs, in order to take these jobs - Main challenge remains the physical environment not necessarily the employer attitudes. - Working for minimum wage does not meet our needs so we are forced to remain on income support. Income Support and Financial Issues We know - Canadians with disabilities are more likely to live in poverty than other Canadians. For example, it has been estimated that over 75% of adults with intellectual disabilities live in poverty. - Current social assistance programs were not designed to provide long-term, flexible supports that are responsive to the individualized income needs of people with intellectual disabilities. - Income support programs do not effectively or comprehensively deliver the supports that people with disabilities need. In fact, they foster dependency and marginalization. - Built as a system of last resort, social assistance systems have become a system of first resort for Canadians with disabilities. - The design of income support programs often act as disincentives to employment and represent risks to income security and stability in transitioning to paid employment. We said Please invest more money so people can get the supports they need...If the supports are in place government could save money in the long run. - I get $125 a month to live on. Could you survive on that? - The amount of income support benefits is simply too low - Consumers spend extraordinary amounts of their personal income on disability related supports. - Paying for all these disability-related, out of pocket expenses will forever keep us poor. - When I did go to work, all I ended up being able to keep was what was called `allowable income` -- which amounted to about $125 per month. - Without appropriate education, training and employment, we will always be poor. - Our need for disability related supports and access to these supports now being tied to eligibility for Income Support keeps us poor. We recommend - All policies and practices within the Income Support program be reviewed with a `disability lens` to identify and then eliminate any systemic disincentives and barriers. Disability Related Supports We know - Disability supports include personal help, personal planning supports, aids and devices, specialized features at home and work environments, medications, developmental still therapeutic services, transportation supports specific to disability, accessible community infrastructure, and human capacity at the community level to include people with disabilities - Lack of access to needed disability supports contributes to the persistent poverty facing Canadians with disabilities and their families comWithout access to needed supports people are excluded from schools, the workplace and communities Disability related supports should be separate from income supports. They should be a right of citizenship We said - The issue of disability related supports is a part of everything else we have talked about. - Without access to adequate and appropriate supports we cannot exercise our right of citizenship. - Accessing these required supports should not forever sentence us to live in poverty or rely on provincial social assistance programs forever. We recommend - Access to disability related supports be separated from eligibility for income support programs Geographic Differences The comments as presented in the above sections represent a summary and amalgamation of comments received across various parts of the province. While there were clearly different priorities given to certain issues and different examples used in various parts of the province no significant regional differences emerged. Regardless of the geography, similar themes arose. Those interested in reading the specific feedback from any one location are referred to the individual Proceeding Reports which are available from the ILRC. Key Messages to Government First and foremost, participants of the public forums want the government of this province to understand and accept that accommodation for people with disabilities is a fundamental human right -- not a privilege or special service. Other key messages to government included the following: - We need affordable accessible housing that will enable supported independent living. - Accessible transportation is an issue in all our communities and must be addressed without delay. Government needs to sit down with the disability community. We need to look at models and research and we need to talk frankly - An unacceptable number of public buildings are still not fully accessible -- thus excluding many of our fellow citizens. - Due to the non-availability of needed supports and services, more and more individuals are feeling increasingly isolated; especially in rural communities. - Staff of all government services must demonstrate and be held accountable for having an understanding of disability and disability related issues. - Government must get better at communicating with and providing information about options to consumers including increased use of alternate media, plain language, etc. - The Home Support program in this province is in crisis. Immediate attention must be given to its policies, practices and funding levels including: - additional consideration to an expanded use of family members as paid support; and - review of models in other provinces to identify best practices - We want equitable not special treatment. - We want adequate housing, jobs, education, etc -- just like everyone else. - Government must increase its commitment to and financial investment in disability. Such a substantive investment is long overdue and it must now be seen as a priority for government. - We must reduce the levels of bureaucracy that separate consumers form the services and supports they require. This needs to involve people with the knowledge and grass roots experience and needs to link with community and consumers. comGovernment needs to stop `consulting` and start `collaborating` with the disability community. - There is a need for integration into one system to meet everyone's needs rather than adding on "for special needs". - All government programs should have employment opportunities for people with disabilities Government's recent decision to create a Division of Disability aimed at ensuring people with disabilities are considered in legislation and policies that affect everyone is a decision welcomed by the disability community. __It is hoped, indeed expected, that this Division will facilitate and enable a broader, more comprehensive analysis of issues, challenges and solutions. Summary In reading the words of consumers as presented in this report, one must be cautious not to assume that these issues still challenges are discrete and distinct; or that they can be addressed singularly. Indeed one must rather acknowledge the interrelatedness of these issues and develop responses and solutions that are broad and comprehensive. For example, attempting to increase employment levels of people with disabilities will be relatively ineffective unless and until accessible transportation issues are addressed. Similarly, employment rates for people with disabilities will remain suppressed until the systemic disincentives are rectified. Finally, it is noted that much of the tone of this report focuses on barriers and challenges. It was the intent of the public forums to give voice to consumers as related to these concerns, and thus the general negativity is not unexpected or surprising. However it should also be noted that at each of the sessions, without exception, there were examples given of promising and encouraging policy and practice. For example the Department of Human Resources, Labour and Employment were often cited for their recent efforts toward career development for people with disabilities. Recent enhancements introduced as part of the provincial Poverty Reduction Strategy were also discussed favorably. Many positive examples of accessibility and/or efforts by communities to become more accessible were mentioned. Certainly there are many positive features to many programs and services, and these are assisting many individuals with disabilities to live fulfilling lives in the community...unfortunately, we have not yet developed a policy framework in this province to ensure that this quality of community life and participation is available to all people with disabilities. That challenge lies ahead. Coalition of Persons with Disabilities - Newfoundland and Labrador Suite 202, TD Place 140 Water Street St. John's, NL A1C 6H6 TEL: (709) 722-7011 FAX: (709) 722-4424 Email: codmain@nf.aibn.com Website: www.codnl.ca Independent Living Resource Centre c/o Barry Gallloway, Executive Director 4 Escasoni Place St. John's, NL A1A 3R6 October 30, 2008 RE: COD-NL Letter of Support for Voices of the People Report Dear Mr. Galloway: The Coalition of Persons with Disabilities NL (COD) is the cross-disability advocacy organization for this province and the provincial affiliate of the Council of Canadians with Disabilities (CCD). Operating at the provincial and regional levels, COD is concerned with all persons with disabilities, promoting their rights and raising public awareness of their needs. The Coalition of Persons with Disabilities works and partners with many of this provinces' disability organizations. COD has been aware and supportive of the ILRC's recent Town Hall series, the results of which are documented in the Voices of the People Report. This report informs and confirms the many issues persons with disabilities in this province face. The issues of transportation, accessible and affordable housing, disability related supports, and disincentives to employment are, unfortunately, part and parcel of living with a disability in NL. The ILRC is a vital resource for many persons with disabilities in NL. The organization provides programs and support, along with the adaptive technology many persons with disabilities need as accommodations to work or to being connected. Like COD, the ILRC works towards promoting inclusion, reducing isolation, changing attitudes, and eliminating discrimination. The work of the Town Hall series and the Voices of the People Report are vital consultation pieces that will help government and other service organizations to better understand and work on the issues of concern for Newfoundlanders and Labradorians with disabilities. The Coalition of Persons with Disabilities supports, endorses and commends the work of the ILRC and the contents of the Voices of the People Report. If you require any additional information, or would like to speak personally, please contact me. Sincerely, Catherine Allix Executive Director, COD-NL