Erin’s Story

Erin’s Story

Jennifer and Owen Chikonoyora and beloved and faithful members of St. Luke’s whose daughter, Erin, along with other vulnerable Albertans, needs our prayers and actions to help ensure continued quality care and nurturing home. Below is Erin’s story, after reading it I encourage you to consider writing to Honourable Rajan Sawhney, Minister of Community and Social Services, asking her to maintain RSS/FSCD/GSS, homes and respite care for some of the most vulnerable and medically fragile children and adults in the province, as Direct Operations of the Government to ensure the best options for the care and safety of our loved ones.

Erin is our oldest child, and has a sister and brother. She was diagnosed with spastic quadriplegia after a very premature birth. She is now 44 years old and has been a member of the Residential Support Services (RSS) family since 1984. Erin is a much-loved member of our own family, too – she is a daughter, step-daughter, sister, stepsister, aunt, niece, cousin, friend to many, and a community member.

A child with severe disabilities brings complicated feelings of loss and longing, as well as overwhelming love. As a parent you become part of a small community with other parents in similar situations. It was not an easy decision for us as parents to place our child in a residential home – especially a child who is totally dependent, non-verbal and in a wheelchair. How could she tell us that she was well-cared for and felt safe? That led to a lot of anxiety on our part. We lived in rural Alberta– all the services Erin needed, including appropriate schooling, were only available in Edmonton, and for a few years Erin travelled to Edmonton for school and appointments – a three hour round trip, which was not appropriate for her physically and emotionally.

Erin is still fully dependent for all her care needs. She is a very determined young lady – right from her birth she has been a fighter! From her fight to stay alive as a very premature baby, to trying to hold her head up, to being able to bring her hands together to try and hold a toy, , to learning to eat and drink without choking (mostly), to picking up a cup or a spoon, to learning to use an electric wheelchair (a major triumph that surprised even the Glenrose staff), to using some ways to communicate to make her needs or emotions known, and many more examples, Erin has always amazed us with trying over and over to master what would seem to be small things to most people. She has guts! She loves us and our family loves her. We are determined to fight for her and protect her in the home environment she knows and loves.

Erin’s home has been Glenwood for 35 years and her friends/roommates, staff and her family are her world. I can tell you that the quality of care Erin has received over the years through RSS has been consistently exceptional. When we visit her we know there will be a peaceful and purposeful atmosphere in the home. The clients are well cared for, engaged in activities that interest them and help them develop; there is nutritious food, and the home is clean and well maintained. Erin has a detailed Care Plan and an Individual Service Plan (ISP) that sets goals on an annual basis for all dimensions of Erin’s life. One important goal is Inclusion. This means a full life lived in the community. Erin attended the On-Campus program at the University of Alberta, and now volunteers in the community through Alumni Support. She volunteers at Summer Festivals, attends events, concerts and shopping trips with a leisure companion she pays for. Inclusion does not mean programs run by private service providers.

The main reason for Erin’s happiness is consistency of care, provided by committed and caring staff (many of whom I have known for years), the established routines, the government standards of care and accountability, staff training in care and safety protocols, wrap-around services and the excellent leadership by supervisors and central office management. I would argue that this is the RSS advantage that has kept our loved ones safe, well and progressing.

So I would congratulate the GOA on a model program that has evolved based on research to a community focus, and has always received great assessments and awards. The staff is well chosen, well trained on an ongoing basis and there is little staff turnover. That is the GOA advantage – fair funding, excellent standards of care, implemented by committed and caring staff. The Government should be proud of their successes!

So my question is WHY? Why would the GOA want to dismantle and/or transfer small but successful programs that look after the needs of some of the most vulnerable residents of our province? How would this be better for our loved ones?

The letter parents/guardians received out of the blue on June 10, from a Director of Disability Services gave no reasons for the potential change and no opportunities for consultation with parents/ guardians who are the voices of our children. We will be “kept informed…” The letter arrived during the COVID pandemic, with other priorities on our minds and social distancing in place, and the time pressure of a 90-day consultation with AUPE.

RSS community homes are our children’s homes – they have no other home – and they have developed meaningful bonds with other residents and staff. There IS a family atmosphere. Any change in service provision will have an impact on our loved ones. Will they stay in the same home? How will standards of care and funding levels, under a contracted service provider, affect their daily living? What will happen to the staff they are familiar with? (I just want to speak on behalf of the wonderful staff that could lose their GOA positons – they do not deserve this, especially after the care they have provided during COVID). There will be confusion and disruptions for the residents, which can have a tremendous impact on their well-being– is this necessary?

This is not the first time that the government has attempted to divest itself of direct responsibility for residential services. A similar situation happened in the mid-1980s, with RDH, as it was called then. As parents/guardians we banded together in a common cause- to stop privatization, because it would not improve the lives of our children. Our active and enthusiastic group of parents persuaded the government through letters and a meeting with then Minister of Social Services, Neil Webber, not to move forward with their plans, and RSS continued to be run directly by the government. By listening to those most closely involved the government made a wise decision. It gave us faith in politics. We hope this will be repeated this time.

The letter sent on June 10 states that “Supporting Albertans with disabilities is our priority…” To paraphrase Gandhi, “The true measure of any society is how it treats its most vulnerable members…” Can we as Albertans not afford to look after our most vulnerable through continuing RSS as a GOA program? Is that how we want our society to be judged? The programs (the 10%) directly operated by the provincial government have been supported by every government since Premier Lougheed. Does this government, under Premier Kenney, want to be known as the government who dismantled the long-standing and successful RSS?

We are not in favour of privatization because we feel that the current level of care will not continue, or be guaranteed by the provincial government, if RSS is not a direct part of the GOA.

Thank you Jennifer for sharing Erin’s story and your family’s struggle. For more information please read this background document Jennifer has prepared.

Add your voice to Jennifer’s and all the friends and family speaking up for the voiceless by writing to Honourable Rajan Sawhney, Minister of Community and Social Services, (css.minister@gov.ab.ca) asking her to maintain RSS/FSCD/GSS, homes and respite care for some of the most vulnerable and medically fragile children and adults in the province, as Direct Operations of the Government to ensure the best options for the care and safety of our loved ones.