Due to social distancing and the closure of some social care services during the pandemic, people with support needs and unpaid carers have been unable to access their usual support and care packages.
But guidance issued in May suggested that other support or items could be purchased instead, as long as it met the individual’s outcomes. Linda McCafferty, parent, shares her experiences of how the guidance has fallen short and what a difference some flexibility could make.
For months, unpaid family carers have been exhausted, burned out and near breakdown due to having no services in place for their young people during this current crisis of COVID-19. Many have requested flexibility from local authorities so they can use their young person’s Self-Directed Support (SDS) Budget from their local area’s social work team. Here in Scotland, there have been requests for disabled trikes, art and crafts materials, iPads, laptops and sensory equipment.
Certain Local Authority Health and Social Care Partnership (HSCP) areas in Scotland have authorised that flexibility on request, no problem, but others won’t.
What could have been
The implementation of SDS – even before this current crisis – was and still is very much flawed in some areas of Scotland; my hometown of Glasgow is one of them. But shouldn’t it have been the case during this challenging time that young people or their carer representatives were given a phone call from their local authority social work team? This could have been to see how people were coping in lockdown and to offer assistance regarding authorising more flexible use of their SDS Budgets – no matter what option of SDS was in place? Unfortunately, this was, and still is, not the case.
Flexibility? If only
I asked my HSCP for flexibility in May of this year for heavy-duty, specialist seating for my 38-year-old autistic LD son who is over 25st. This would enable him to enjoy the garden, get some fresh air and be outside during lockdown. The response? That we should temporarily relocate the chair he sits on inside our home to the garden (which we as carers are not physically fit to do, bearing in mind, his chair is in his upstairs bedroom). The response also stated that we could maybe contact the Scottish Welfare Fund?
I also requested flexibility for a shed for the back garden to help with my son’s repetitive behaviour/role playing, which is very vocal and draws attention. A garden shed would give him a safe space and would also provide him shelter, a space to enjoy his art and music and help to regulate his emotional and behavioural responses to sensory stimulation, no matter the change of season. I have been told by my local area team that there is no flexibility as the position in relation to using the funding (option 2) can only be used for supported hours. This response does not seem in line with COVID-19 guidance on SDS (option 1 and option 2).
Room for improvement
It has been for many much like being in a sketch scene from Little Britain, where Carol Beer seems quite disinterested and always replies with the dull and despondent ‘Computer says no’.
Unpaid carer representatives are reporting in other areas of Glasgow that when requesting to use the budget flexibly, the response they have had is that this will affect the hours of support/respite that they have in the budget.
Independent Living Fund (ILF) has been great for our young people here in Scotland – some of the creativity I have seen on Twitter has blown me away. But for people aged over 25, this is unfortunately not in place. Despite this, ILF have understood the challenging times and are encouraging young people and their carer representatives to get in touch if they would like to use their transition funding in a different way during this time.
If you would like to read more about Linda’s work to raise awareness of autistic and learning disabled people and their unpaid family carers, follow her on Twitter.