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.
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.
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.
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
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.
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
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?
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.
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?
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.
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, (email@example.com) 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.