E Yost Presentation to SP COUNCIL AGM 2019

Calgary Service Provider Council 2019 Annual Meeting Presentation ELAINE YOST REFLECTS ON WHERE WE’VE COME FROM

Minister Sawhney, honoured guests, and fellow service providers. Minister Sawhney it is with great appreciation that we welcome you and thank you for coming to our Calgary Service Provider Council AGM. We are very happy you are here. We hope you will have the time and opportunity to meet some of the passionate and committed leaders who are here today.

We also want to emphasize our willingness and desire to support you, to share our knowledge and experience with you. We also want to provide you with the opportunity to learn about the challenges we face, the rich Calgary history, and to get to know the amazing people who are part of this sector -the individuals we support, the families, the agencies, our staff and our government PDD department.

A 50-YEAR JOURNEY IN THE DISABILITY COMMUNITY In reflecting on my involvement over the past 50 years, it is with a very grateful heart that I share some of my thoughts about where we have been and where we are going. There is so much to say about the journey of families and individuals, agencies and staff, the Calgary community and the provincial government. There is so much to learn from each other in our various roles and responsibilities.

Having been actively involved in the world of disability for the past 50 years, there are so many highlights and challenges to share. Overall, it has brought clear meaning and purpose in my own life and I have such appreciation for the wonderful friendships and relationships that have developed and grown as a result. I am thankful that I live in Alberta and that most of our life as a family has been here.

I appreciate the opportunities that I have been given and for the joyful and fulfilling work I have been able to do for the past 33 years at OPTIONS. STANDING ON THE SHOULDERS OF TWO MOTHERS I am thankful that 67 years ago two mothers, both of whom had sons with Down Syndrome, met to discuss and share their journey, their frustrations and their hopes for their children.

At the time in Alberta the prevailing belief was that individuals with disabilities were “defective” and “feeble minded” and a drain on society. Those two moms believed their sons were not defective or feeble minded, that they could learn, and they had strengths that could be developed. They were unwilling to follow the advice of the medical profession and put their sons in an institution. We stand on their shoulders.

I am grateful that in 1953 a “school” began in Christine Miekle’s kitchen and in 1954 the Calgary Association for Retarded Children was formed. The courage of those two moms is a shining example to us all that we sometimes need to challenge existing beliefs in order to move things forward.

A MEDICAL MYSTERY AND CARING COMMUNITY I am grateful for the birth of my first son, Michael in 1969, and my second son, Sean in 1972. As a result of Michael’s needs, we were introduced to a wide variety of experts in the medical field. Because Michael was diagnosed along with 28 others in the world with a syndrome called CoffinLowry, we became involved with genetics, diagnostic radiology, neurology, endocrinology, urology, immunology, anesthesiology, emergency medicine, pain management, palliative medicine,

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physiotherapists, occupational therapists, nutritionists, to name a few. We had intimate knowledge of the corridors of the hospitals, the shifts of nurses, the proficiency of the system.

We met so many caring and wonderful doctors, nurses and other professionals, some of whom were open to my desire for them to listen and to help them know how the journey was affecting us. Dr. Brian Lowry the co-describer of Michael’s syndrome is a true ally and friend. As a result, I was given the opportunity to speak at the medical school, and to become involved in forming an Advisory Board to the Alberta Children’s Hospital in Calgary, the first in Canada. I was invited to attend Pediatric Hospital conventions and share our experience. I had the opportunity to attend international conferences and to participate in national committees concerned with complex medical conditions.

I learned about the fragility of life, the importance of allies, the necessity of the renewing support of other parents facing similar challenges. I learned that dreams can be shattered and of the difficulties that can arise in a marriage when values are not in sync.

Michael appeared to be a typical little boy but there were complications at birth. We thought his slower development was caused by all the medical issues he had. However, when he was 3, we were told it was likely he was mentally retarded. I am grateful that the anger I felt at that time could be turned into positive action. It is hard to believe that only 47 years ago, institutions were perceived as the solution to the “problem of having a child with a disability”.

We were encouraged to put him into the Woodlands institution in New Westminster, B.C. It was my first experience with any type of a place like that. On the tour I became physically ill and vowed to myself at that time that my wonderful little boy would never have to live in a place like that. Our journey had begun. I am grateful to have learned about the lives of the people who were placed in institutions, the heartbreaking decisions some families made which raised the question of why there weren’t alternatives.

In 1969 the Vocational and Rehabilitation Research Institute was created in Calgary. Christine Miekle and Dr. David Gibson wanted a research/training facility that could demonstrate and prove to skeptics that individuals with disabilities had the capacity to learn and to grow. They were also committed to developing a skilled workforce who could teach and support individuals so they could live in the community. There were a number of academics who held this view and who were willing to support and promote the new idea that was being developed nationally and internationally of a social and rights models of service.

PETER LOUGHEED PROTECTS THE RIGHTS OF PEOPLE WITH DISABILITIES I am grateful that in 1972 Premier Peter Lougheed toured Alberta School Hospital/Deerholme in Red Deer, later to become Michener Centre. He learned about the eugenics program which had been existence since 1928. At one time, Alberta had the highest sterilization rates in North America. He learned about the medical experiments that were being done on the inmates there. I am grateful that his leadership and values and appreciation for human rights caused the Sexual Sterilization Act to be repealed in 1972. The Alberta Bill of Rights was passed at that time as well, and included all Albertans, including people with disabilities.

In looking for resources and ideas about programs for Michael, I learned about the Providence Child Development Centre in Calgary which had the only “integrated” pre-school program in Western Canada at that time.

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So in 1974 we moved to Calgary so Michael could attend PCDC and benefit from the physiotherapy, occupational and speech therapies available there. This was my beginning of learning and understanding the importance of family advocacy, the critical need and the crucial partnership that must exist between the government and families to move things forward. I am grateful that Michael was able to attend there and receive the benefit of typical relationships with his friends and peers. I was grateful then as a single parent, to be given the opportunity to develop the volunteer program, the Foster Grandparent program and the parent support program.

I believe that most innovation in developing supports for individuals with disabilities has come from families and individuals. I am so grateful that I live in Alberta where we have had people in government who are aligned with our desire to create better lives for all individuals with disabilities, who are willing to have a dialogue with us and who are also willing to risk in the creation of new programs that respond to the needs.

The education system in Alberta only offered segregated schools. So, in 1979 a group called Parents for Progress was formed. We were focused on changing attitudes in the Education system. Many of us were also members of the Alberta Association for the Mentally Handicapped, who later changed their name to the Alberta Association for Community Living and subsequently have the new name of Inclusion Alberta. Together family groups urged the development of Standards of Service, the creation of Handicapped Children’s Services and, in 1979, the creation of the Assured Income for the Severely Handicapped.

I am very grateful that Baker Centre in Calgary was found to be unsafe for residents and that new accommodations had to be created for the individuals who lived there. It began one of the most exhilarating experiences I have ever been part of in community development. The project was called Calgary Community Horizons 84. It was supported by the government, the community, families/Guardians and individuals who are the recipients of our decisions.

Twenty-six committees were formed, 13 focused on children and 13 focused on adults. The committees were comprised of experts in various fields, with parents, government and community representatives. It brought our community together and created opportunities for real listening, and appreciation for the complexity of the needs of our community, It identified gaps in support and looked at best practice.

THE COMMUNITY CREATES A PLAN FOR DISABILITY SERVICES A plan was developed that reflected the desires of the Calgary community to support individuals with disabilities. I am grateful that the energy, focus and collaborative relationships that still exist today, were birthed at a time when the problems facing the community were significant. Out of that effort, 23 new community agencies were formed to support the vision that had been created.

In 1986 my organization OPTIONS was formed. One of our very first families involved with us is here today, Fran Sartison. I am incredibly appreciative of the relationships that have resulted from our work.

We have faced many challenges and we have not always felt up to the complex nature of the needs and sometimes the expectations placed on us. However, we have benefited from the support, encouragement and friendship of our service provider colleagues, the understanding and support of the PDD department and the Calgary community. We have had visitors come from all around the world to talk about how services are delivered and how we work with individuals and their families. I am grateful that the services in Alberta are held in high esteem and that we are viewed as leading edge.

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OUR DISABILITY COMMUNITY HAS HAD MANY SUCCESSES I am grateful that so many individuals are living fulfilled and wonderful lives because of the support, skill and commitment of our agencies and staff. I am grateful that so many individuals who survived early lives of the institution are now working, paying taxes, and some who are now entering retirement.

I am incredibly proud of the many successes we have had as a community.

I am grateful this province has demonstrated its commitment to its citizens with disabilities by taking the time to review what is happening and to listen to those who are impacted by policy and practice. The attempts to develop a clear mandate and to create mechanisms that support the life span are worthwhile struggles that we all are a part of.

I am grateful we have a government department dealing with Red Tape.

My life has been enriched by the people I know who care deeply for our community. I have learned that the wide range of challenges we face as a community are best and most easily resolved when we work together. I have found in my life that this work has been a catalyst for my own spiritual and emotional growth. I have developed resilience for which I am grateful. I have learned that humor, love, patience, joy and hope are the necessities of life. For that I am so thankful.

Thank you very much.

Elaine Yost, President and Founder OPTIONS

June 14, 2019

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