FAN 2020 Winter Bulletin

Dear FAN members,

There have been several caring and well written letters sent to the Premier and Minister of Health as well as senior staff in the Department of Health, Shared Health and the Health Science Centre (HSC) highlighting concerns expressed by parents and support network members regarding the situation at the HSC for Quinn Stewart and his mother Christina. Quinn is nonverbal and intellectually delayed, and his mother was not allowed at his bedside. Happily, Quinn is now at home in the safety and comfort of his family.

Advocacy is an instinctive reaction of parents, family members, SDM and friends to protect and care for their loved one. The advocacy done by the Family Advocacy Network in its correspondence to elected officials (MLAs & MPs) as well as the head of departments and establishments tries its absolute best to relay the experiences and feelings expressed by its members. Below are some of what FAN has communicated on behalf of families to bureaucrats and executives related to recent events.

• At this challenging time of Covid -19 there is no question that restrictions are needed to control the spread of the virus and that we must all take precautions. Supporting our loved ones at this time is crucial. Families recognize and want instruction on infection control procedures, protocols, and PPE in order to, not only be able to assist loved ones in hospital with hygiene and meals, but also help medical staff with health information and communication with loved ones.
• Being at the side of our loved ones in any environment, but especially in hospital, reduces the risk of preventable harm and lessens heightened anxiety which could be a factor increasing their health problems.
• Family members, SDMs and designated support network members, are not visitors.  We are essential care partners responsible for helping loved ones in all stressful situations. Our kids, whether children or adults, who have physical, cognitive, or mental health limitations need us in the role of an essential care giver. It is our presence that will reduce the risk of loved ones becoming depressed or agitated due to no contact with those they know and love.

At this challenging time, we all recognize that visitor restrictions help control the spread of Covid, but this also puts people with disabilities at greater risk if they need help interpreting their needs, symptoms, and choices. Policy in Manitoba needs to change, and FAN is lobbying to have the current visitor policy revised to accommodate essential supports for patients with disabilities. All FAN members are needed to advocate for special accommodations.

Please do what you can in supporting FAN by writing to and educating your MLA and others who may have influence. Help them in understanding the increased risk to our loved ones and the dire need to update policy and guidelines that are needed to recognize the essential role of family members and in some cases support staff.

Your loved ones are valued and your commitment to them is recognized. Thank you for supporting FAN especially at this time when you may be feeling inundated with all the changes and restrictions.

FAN is Hope, Unity, Grassroots, Support – HUGS; to all of you.