It has taken a pandemic and lockdown for many people to experience what it feels like to have very little control over decisions.
Our youngest child is autistic and has a significant learning disability. Life in lockdown has been particularly difficult for him, as he has been unable to comprehend why all his favourite activities ended rather abruptly in March. He was no longer able to go to school, play on the swings in the park, go to the shops to browse Disney DVD collections, go to nana’s on the weekend, or attend any of his play schemes anymore.
After a particularly difficult morning in April, which resulted in a smashed TV screen, a broken DVD player, and a hole in the living room wall, it was time to stop pretending that we were going to return to any form of normality any time soon, and to rethink how we could best support our child with the resources that we had. My son receives a Self-directed Support (SDS) budget which we hadn’t been able to make use of during lockdown due to all the usual “services” being closed. With some apprehension, I emailed his social work team that morning to ask whether we could use some of his budget to buy play or sensory equipment for the house; we thought it might help him to regulate and be less prone to smashing up all his favourite things. To my surprise (and utter relief!), I received an almost instant reply from the social work team; it said, quite simply, “yes, go ahead.”
Findings from the recent survey carried out by the Coalition of Carers in Scotland (this link will take you away from our website) on the use of SDS during COVID-19 mirrored some of our experiences of local authorities taking a more responsive and flexible approach to SDS in order to meet a person’s outcomes. However, on a slightly less positive note, the report also highlighted that the practice of using SDS in a more flexible way during lockdown had not been as consistent and widespread as we had hoped.
The majority of carers (60%) who had responded to the survey were unaware that they could even ask for their SDS budgets to be used in a more flexible way during lockdown. Only 1 in 5 carers reported that they (or the person for whom they were caring) had been able to use their SDS budgets in a much more flexible way during lockdown. The flexible use of their budgets included being able to purchase play equipment, technology, or household items; being able to choose the hours and activities their PA or support person undertook; and being able to employ family members to provide support. 43% of unpaid carers who had asked their local authority if they could use SDS more flexibly have had their request declined; a further 27% are still awaiting a decision.
One of the fundamental principles of SDS is that people should be able to exercise their right to choose and control their own care and support arrangements. Such a simple concept, and yet it is something which rarely happens in a consistent way across the different local authorities in Scotland.
It has taken a global pandemic and a national lockdown for many people to experience, perhaps for the first time, what it feels like to have very little control over decisions that affect their lives in a significant way. It’s not a great feeling to have very little autonomy, control or choice over your life, is it? And yet, we expect people with support needs and unpaid carers to continue giving up their right to choose how they want to manage their own care needs and live their lives.
As we ease out of this crisis it’s imperative that people, particularly those in positions of power and privilege, don’t lose sight of what it felt to have so little control over their own lives during those few weeks and months in lockdown, and the impact that this had on their mental wellbeing. Other people’s lives during lockdown is the everyday reality for many unpaid carers and people with support needs who are often unable to enjoy the freedom to make choices about their own lives. However, it doesn’t have to be that way. Everyone should have the right to choose and to have control over the decisions that impact their lives. This is exactly why we must continue to campaign and advocate for those rights and for the principles of SDS to be fully implemented, in a consistent way, across every single local authority and HSCP across Scotland.
- Coalition of Carers in Scotland’s report on unpaid carers’ use of SDS during COVID-19 (this link will take you away from our website)
- Scottish Government Guidance on SDS during COVID-19 (this link will take you away from our website)
- Social Work Scotland’s FAQs on SDS Options 1 and 2 during COVID-19 (this link will take you away from our website)
For more information on SDS and local support organisations in your area, visit Self Directed Support Scotland’s website (this link will take you away from our website).