“Transformative change took place and our challenge now is to sustain that."

Down’s Syndrome Scotland (DSS) is a member-led organisation and the only charity in Scotland dedicated solely to supporting people with Down’s syndrome, their families and carers. Supporting individuals to reach their fullest potential, the organisation provides a range of family support services, influences public policy and works to change attitudes.

COVID-19 hit hard with the organisation being forced to furlough half of its staff while responding to a threefold increase for support during the crisis. In the four months to the end of July, DSS had 1,126 family contacts (compared with 1,065 in the whole of 2019). The charity responded by setting up an 8am-8pm helpline, making hundreds of kindness calls, shifting its communication support programme online and running family Zoom chat sessions offering much needed support at a time when many families were struggling. A bespoke membership platform called ‘Hub 21’ was launched allowing members to connect, chat and reach out to each other and run online events. Essentially the organisation fast tracked digital plans that had been under development, with necessity and survival being the catalysts.

Support for people with Down’s syndrome and their families from DSS was crucial at a time when already existing inequalities were exacerbated by COVID-19. The language of the pandemic reinforced some prejudices and Eddie McConnell Chief Executive of DS Scotland feels that the early references to COVID-related deaths as having ‘underlying health conditions’ revealed  discriminatory attitudes: “It was, as if it was ‘acceptable’ that people who had underlying health conditions had died from COVID-19. These were troubling comments.”

Worse was to come as families supported by the charity spoke of traumatic phone calls received from GPs and others to check whether a DNR (Do Not Resuscitate) order should be put in place for their son or daughter.  The level of inequality deepened further as many families had their social care support withdrawn with little or no notice and they became full-time carers overnight leading to untold levels of stress and strain. This put people with Down’s syndrome and their family carers at significant risk and many continue to deal with the negative impact on their mental health and wellbeing.

Eddie feels that during the COVID-19 crisis the third sector has shown its true value, his organisation included. However, he fears that as we move on to next stages the opportunity for dramatic and positive change in society and across health and social care, may not materialise.  He feels there is already a creeping back to the old ways of working as the major institutions take back control at a time when we have every reason and chance to construct the world differently. On the challenges and opportunities for the third sector he is clear: “How sustainable is the current level of working going forward? Charities should be put at the center of the renewal process, and that doesn’t just mean finance being made available, it means recognising the worth and value of the sector too.”

In a wider sense there are opportunities at community level following the impressive responses where local communities came together in support of local people throughout the pandemic.

Eddie feels this is also of importance: “Transformative change took place and our challenge now is to sustain that. How do we build community resilience while also confronting the deep inequalities that COVID not only shone a light on but, without a doubt, exacerbated?”

On the future for DSS specifically, new plans are now in place as the charity prepares to pick up where it left off when the pandemic struck. Later this year, a new strategy will be launched inviting everyone to ‘Take a Step Forward’ and create an equal future for all people with Down’s syndrome. The strategy has four ambitious asks: more meaningful employment, equal access to good health, much improved transition planning, greater community involvement for people with Down’s syndrome. These asks will set the agenda for DSS going forward. Fulfilling them will no doubt be challenging considering the depth of inequalities we have seen uncovered by the pandemic.

As DSS looks to the future it does so with determination and with trepidation. Like many charities, the inevitable economic downturn will impact the organisation itself and the families and people with Down’s syndrome it supports. However, the vision is clear and is testament to the commitment of leadership, staff and supporters alike.

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