Premier's Council on the Status of Persons with Disabilities Annual Report 2004 Letter of Transmittal March 31, 2004 The Honourable Ralph Klein Premier of Alberta 307 Legislature Building Edmonton, Alberta T5K 2B6 Dear Honourable Premier: I have the honour to present the fifteenth Annual Report of the Premier's Council on the Status of Persons with Disabilities. This report covers the activities undertaken by your Council during the fiscal year ending March 31, 2004. It is submitted in accordance with the provision of s.7 (1) of the Premier's Council on the Status of Persons with Disabilities Act for your presentation to the Legislative Assembly. Respectfully submitted, Rob Lougheed Chair, Premier's Council on the Status of Persons with Disabilities MLA, Clover Bar – Fort Saskatchewan Message from the Chair Pic of Rob Lougheed I have the honour to once again present the Annual Report of the Premier's Council on the Status of Persons with Disabilities. This report covers the activities undertaken by the Council during the fiscal year ending March 31, 2004, and as you will discover, it was another busy year. On December 3, 2003, the Premier's Council joined with the Edmonton Advisory Board on Services for Persons with Disabilities and the Alberta Disability Forum to host a noon-hour celebration in Edmonton of the International Day of Disabled Persons. I was pleased, as Chair of the Premier's Council, to present the Gary William McPherson Award at that event. The award, named in recognition of the first Chair of the Premier's Council, is awarded annually on December 3 to an individual or organization that exhibits leadership in making sustainable change that leads to the full inclusion of persons with disabilities. This year the award was presented to Wayne Ayling, Mayor of Grande Prairie and Michael O'Reilly, President of Thibodeau's Centre for Hearing Health and Communication. I would like to offer my sincere congratulations to them both. The need to find better ways for government to improve the status of persons with disabilities was acknowledged in the Throne Speech in February 2004. In this speech, Honourable Lois Hole, Lieutenant Governor of Alberta, announced the creation of the Office for Disability Issues (ODI). The purpose of this office is to facilitate the inter-departmental collaboration that will be necessary to bring about the changes outlined in the Alberta Disability Strategy (ADS). There was overwhelming support from the disability community for the ODI and the Premier's Council is happy to have played a role in bringing this about. Also in February, with the support and encouragement of Council members, I introduced Bill 201, the Safety Codes (Barrier-Free Design and Access) Amendment Act 2004 in the Legislature, where it received first reading. The bill establishes the Barrier-Free Committee within the Safety Codes Council of Alberta, and will make barrier-free design a key element of new building construction in Alberta. I want to thank Premier's Council members and staff for all their efforts over the past year. It was this team effort that made the ADS a reality – a reality that will help us continue on the path to full inclusion for persons with disabilities. Sincerely, Rob Lougheed, MLA Clover Bar – Fort Saskatchewan Highlights of the past year… The Premier's Council on the Status of Persons with Disabilities works to systemically advocate for the full citizenship of Albertans with disabilities. This task involves the Premier's Council in a series of activities throughout the year. A significant event in 2003/2004 was the creation and first presentation of the Gary McPherson Award of Excellence honouring community leadership. The award was presented to two individuals, Wayne Ayling and Michael O'Reilly, on December 3, 2003, which is the United Nations' International Day of Disabled Persons. Other 2003/2004 highlights included collaboration with the Barrier-Free Design Committee in Calgary, first reading of Bill 201, the organization of activities across the province for the International Day of Disabled Persons, planning for the first provincial Disability Community Symposium in June 2004, and supporting the creation of Alberta's new Office for Disability Issues. Office for Disability Issues (ODI) One of the most important disability-related achievements in Alberta in 2003/2004 was the creation of an Office for Disability Issues (ODI). Over the past decade, numerous jurisdictions around the world — from the Province of Saskatchewan, to the Government of Canada, to the Government of New Zealand — have developed similar offices devoted to ensuring that government disability strategies are being implemented in light of promising practices around the globe. Long and intense work was put into the formation of Alberta's ODI. The Premier's Council devoted a considerable amount of its energy and time in 2003/2004 providing input and feedback to Community Development Minister Gene Zwozdesky, regarding the ODI. As a result, Council members played a significant role in shaping its creation. Though at first glance one might ask why the ODI is necessary when Alberta has the Premier's Council, the two entities have important and complementary roles to play in the province's move towards greater inclusion. Since its inception, the Premier's Council has been a key player in communicating the needs of Albertans with disabilities to the Government of Alberta. A milestone was the release of the Alberta Disability Strategy (ADS) on December 3, 2002. It recommends steps that would enable persons with disabilities to achieve full citizenship through improved supports. As part of its mandate, the Premier's Council will also advise the ODI as it springs into action. The ODI differs in its role, but shares the Premier's Council's commitment to promoting full inclusion for persons with disabilities. In her February 17, 2004, Throne Speech Honourable Lieutenant Governor, Lois Hole declared that a key component of Alberta's vision to be the best place to live, work and visit necessitated, "more effective and better coordinated services." In her words, "It calls for the creation of an Office for Disability Issues, which will work with the Premier's Council on the Status of Persons with Disabilities and government ministries to encourage greater cross-government coordination and more effective delivery of programs for disabled Albertans, promote positive attitudes toward the disabled and raise awareness of disability issues." (p. 8 Speech from the Throne) With this vision to collaborate with the Premier's Council and assist the Government of Alberta in responding to the ADS, the ODI is positioned to make significant contributions to the lives of Albertans with disabilities. What has the community been telling us? Individuals with a stake in disability issues contact the Premier's Council every year via telephone, e-mail, letters, and other forms of correspondence. In fiscal 2003/2004, the Premier's Council received and responded to 302 such contacts. Almost all of these contacts were from the community, while the remainder came from government and professional stakeholders. Just as in recent years, the highest percentage of community contacts (30%) related to financial supports. Many of these financial inquiries and concerns reflected themes consistent with those identified in fiscal 2002/2003. Although 82% of all contacts received had direct relevance to the Premier's Council's legislated mandate: policy and development, evaluation/research, advocacy, and referrals—there were some notable shifts between the type of contacts received last year and those received in fiscal 2003/2004. Contacts relevant to evaluation/research dropped 21% while contacts relevant to advocacy and referrals totalled 66% of all contacts. Context for Reporting The 302 contacts received by the Premier's Council have been sorted by categories in order to identify what primary issues individuals called in regards to, and what primary responses the contacts elicited from the Premier's Council office. The following example describes the process used for categorizing contacts. Information reported in this section is reported using this two-part process of issue and response identification. Issue categories were designed based on the ADS description of key disability supports. Issue categories are: full citizenship, personal supports, education and learning supports, financial supports, and employment supports. Response categories were designed based on their relevance to the Premier's Council's mandate. Response categories are: Evaluation/Research – identification and review of best practices, emerging issues and initiatives, demographic profiles, and existing programs and services that concern persons with disabilities. Policy and Development – analysis of current policies affecting persons with disabilities, and the development of responses to issues and concerns. Advocacy – barriers, gaps, and deficiencies in services and supports that require systemic advocacy. Referral – direction towards appropriate resources necessary for meeting needs. Not Relevant to Mandate – not directly related to disability issues and/or the Premier's Council's mandate. Full Citizenship Approximately 16% of persons who contacted the Premier's Council office in 2003/2004 had inquiries or concerns about barriers to full citizenship. The most frequently cited issues in this area were access, abuse and discrimination, and gaps in service and support. Access Albertans expressed that physical access to buildings is a significant barrier to inclusion and noted that increased access would widen the choice of activities available to them. Types of facilities identified as lacking access were: malls, swimming pools, and municipal and provincial buildings. Despite the number of accessibility concerns, there were also many individuals and community organizations that called seeking support for adapting their facilities. Abuse and discrimination Abuse by service providers and residential property managers/owners was reported as a frequent occurrence, creating an unstable and unsafe environment. In some cases, individuals experienced harassment and threats from strangers for reasons such as parking spots. In one case, a teenage girl was attacked in a public place. Gaps in service and support Individuals expressed frustration with the complexity of applications to access various programs. Many people identified portability of services both within Alberta, and for those moving into the province, as a challenge. The inconsistency of services for youth with disabilities transitioning into adulthood was also noted as a gap. Personal Supports Approximately 19% of people who contacted the Premier's Council office in 2003/2004 had inquiries or concerns about personal supports. The most frequently cited issues in this area were housing, home care, assistive devices or technical aids, and transportation. Housing A large majority of those with housing inquiries and concerns identified affordability as a major barrier, augmented by the cost of utility bills. In some instances, individuals and/or couples received eviction notices as a result of unpaid rent. People with their own homes also noted that the cost of carrying out modifications is prohibitive. Although funding for adaptations exists, many people felt it is insufficient. Home care Quality and breadth of care, and reduced hours of care were identified as key concerns for individuals receiving home care services through formal programs. Although support gaps in this area could be filled by private services, they are too expensive for most people to access. Other issues that came up repeatedly were respite care and funding policies for family members providing care. Assistive Devices/Technical Aids Although many individuals know what types of devices or aids they need, they do not have the financial resources to purchase them. In some cases, eligibility criteria for the Alberta Aids to Daily Living program were described as being too restrictive. While some individuals already owned devices or aids, they expressed challenges to maintaining or adapting their equipment (e.g. replacing $500 wheelchair batteries). An issue echoed by several Albertans was reduced/denied building access due to the use of assistive animals. Transportation Funding for the adaptation of vehicles and travel expenses for people/families needing to drive to urban centres for medical reasons were two recurring transportation concerns that were expressed. Education and Learning Supports Approximately 6% of persons who contacted the Premier's Council office in 2003/2004 had inquiries or concerns about education and learning supports. The most frequently cited issues in this area were: assessment and placement, funding, adult education, and flexibility. Assessment and Placement A frequently mentioned concern was the need to place assessments necessary for persons with disabilities in appropriate educational settings. Parents seeking an adequate learning environment for their children, and adults seeking upgrading or post-secondary education, raised this concern. Funding Funding was a prominent inquiry and concern, especially for parents of children with disabilities. Parents stated that insufficient funding resulted in limited school and program choices, an inadequate number of class aides, and insufficient funding for specialized services offered through schools such as speech therapy. Adult Education Various individuals inquired about funding for educational programs that would help disabled adults receive employment-focused training/retraining. Concerns over limited programs and funding for post-secondary students with disabilities were identified as barriers to adult education, especially for adults in rural locations. Flexibility Many individuals expressed frustration with the lack of flexibility afforded to students with disabilities. This was of particular concern to adult learners who, having accessed a course or program, encountered inflexibility that hindered completion of their studies. Financial Supports Approximately 30% of persons who contacted the Premier's Council office in 2003/2004 had inquiries or concerns about financial supports. The most frequently cited issues in this area were Assured Income for the Severely Handicapped, disability tax credits and medication. Assured Income for the Severely Handicapped (AISH) The main concern expressed by the community is that the financial support received by individuals eligible for AISH is not sufficient to meet their basic needs in a secure manner. Individuals also had concerns about the length of time it takes to process AISH applications, reduced support based on Canada Pension Plan Disability payments, and the AISH appeals system. The issue of inflexibility of support as it relates to work earnings and exceptional expenses (e.g. the purchase of an expensive adaptive device). Disability Tax Credits Many individuals inquired about what tax credits where available for people with disabilities. They indicated they had not previously accessed this financial benefit because they did not know it existed or did not know how to access it. Medication Medication was a cost issue for individuals not eligible for AISH, as well as for those with extended coverage plans. It was noted that those with extended coverage still had to pay out-of- pocket expenses for expensive medications. Employment Supports Approximately 9% of persons who contacted the Premier's Council office in 2003/2004 had inquiries or concerns about financial supports. The most frequently cited issues in this area were unemployment, adaptation, and self-employment. Unemployment Most Albertans with inquiries or concerns about employment said they were unable to find suitable work despite completing post-secondary education. Many said they are willing to work and are prepared to do so, but remain unemployed. Adaptation Both employers and persons seeking employment had inquiries and concerns relating to work adaptation. Shorter shifts, off days, flexibility, and varied work for those who cannot sit or stand for long periods of time are examples of adaptations employees and employers expressed concern over. Many persons with disabilities expressed fear of losing a job following a request for work adaptations. Self-employment Several persons with disabilities had inquiries about supports for self-employment. They considered themselves skilled and entrepreneurial, but needed assistance with the start-up process. This employment option was described as viable and flexible enough to meet their needs. Members of The Premier's Council on the Status of Persons with Disabilities The Premier's Council (2003-2004) is composed of nine members including Rob Lougheed, MLA, as the Chair. Premier's Council members represent a broad background of cross- disability knowledge and diversity of geographic locations in Alberta. Rob Lougheed, Council Chair Rob Lougheed is the Premier's Council Chairman and has spent most of his life in the field of education. The MLA for Clover Bar/Fort Saskatchewan has over 28 years of experience as an Alberta educator. In addition to being an MLA and Chair, Rob currently serves as a member of the following committees: Standing Policy Committee on Learning & Employment, Capital Region Caucus, the Select Standing Committee on Public Accounts, the Farm Property Assessment Review Committee, and the Alberta Heritage Savings Trust Fund Standing Committee. Gordon Bullivant Gordon Bullivant of Calgary was the Chair of the Education and Learning Supports Committee and a member of the Full Citizenship Committee for the development of the Alberta Disability Strategy. He is Past President of the Learning Disabilities Association of Canada and continues as the Chair of the National Legal Committee and member of the Professional Advisory Committee. He is an active member of the Calgary Stakeholders Group for Learning Disabilities and represents the Premier's Council on the Advisory Committee for Alberta Learning's Review of Special Education. Gordon is the Executive Director of the Foothills Academy, a centre for children with learning disabilities. The Academy is recognized internationally for its expertise in teaching techniques, research and practical application of program needs to children and youth with learning disabilities and/or Attention Deficit Disorder. Gordon has been active in the special needs community for over 30 years. Margaret Conquest Margaret Conquest of Edmonton was the Chair of the Employment Committee and a member of the Personal Supports Committee for the development of the Alberta Disability Strategy. Margaret has a Masters of Science in Health Promotion from the University of Alberta. She studied the impact of acquired disability and rehabilitation services on the sexual health of women with spinal cord injuries, and continues to chair or present at National and Provincial Conferences. She is actively involved in therapeutic recreation programs and health promotion for persons with disabilities. Shirley Dupmeier Shirley Dupmeier of Medicine Hat was a member of the Financial Committee and the Personal Supports Committee for the development of the Alberta Disability Strategy. She has extensive experience working with issues surrounding visual impairment and other disabilities and is a liaison with many disability organizations in Medicine Hat. Gerald Gordey Gerald Gordey, formerly of Vegreville and now residing in Edmonton, was the Chair of the Alberta Disability Strategy's Financial Supports Committee. He has a long history of community involvement and has contributed to many disability organizations as an advisor or volunteer. Gerald has been a county councillor, school board chair, representative of the Vegreville Health Unit Board, and advisory member of a voluntary hospital board. He has served on the board of directors for Edmonton Social Services for the Disabled, Alberta Rehabilitation Council for the Disabled, Alberta Special Olympics, and the Handicapped Hunter Review Committee. He is also the former Chair of the Vegreville Association for Living in Dignity (VALID), a volunteer organization responsible for providing services to persons with disabilities in the Vegreville region. Judy Hellevang Judy Hellevang of Calgary was a member of the Full Citizenship Committee and the Education and Learning Supports Committee for the development of the Alberta Disability Strategy. As a volunteer, Judy has been associated with the Developmental Disabilities Resource Centre (DDRC) of Calgary for 19 years. She facilitates the DDRC's Board Advisory Committee, which is made up of people with developmental disabilities. Judy has been an advocate for many people with disabilities and continues to promote their rights. Linette Kelly Linette Kelly of Calgary is a public representative on the Students Finance Appeal Committee and past director of Project 118 Children Services Society. She has served on many volunteer committees as a fund-raiser, including an annual benefit for the Calgary Homeless Foundation. She has been an advocate for persons with developmental disabilities for many years and is an active caregiver for a sibling who has a developmental disability. Linette is an executive assistant and corporate secretary for a Calgary consulting firm. Jim Killick Jim Killick of Morinville was Chair of the Coordinating Committee for the Alberta Disability Strategy, as well as Chair of the Personal Supports Committee and member of the Employment Supports Committee. Jim has been actively involved in the field of community rehabilitation in the province for approximately 20 years in the areas of counselling, program development and administration. He is presently working with the Canadian Paraplegic Association and continues to be involved as a participant in numerous community associations working towards removing the barriers facing persons with disabilities. Carrielynn Lamouche Carrielynn Lamouche is a Métis consultant from Gift Lake, one of Alberta's eight Métis settlements. She possesses a degree from the Royal Conservatory of Music and a Masters degree in Social Work. An Aboriginal person with disabilities, she works with governments in the area of social programming. She also assists governments, businesses and educational institutions to identify and remove barriers that prevent or discourage persons with disabilities from full participation in the community. Among her extensive committee work is service on the Aboriginal Healing Foundation Board, the Provincial Human Rights Multicultural Education Fund Advisory Committee and the Canadian Institute of Health Research Ethics Standing Committee. 2