'My Support, My Choice', this is a phrase that has become commonly used to refer to support and how it should be implemented since Self Directed Support (SDS) first came into force in 2013.
However this personalised phrase and approach seems to have been forgotten about during the covid-19 crisis. Everyone understands the restrictions and pressures we are currently living with. it's affecting every aspect of our well-being, our physical, emotional and mental health. This is even further emphaised if you are a disabled person or if you are caring for a disabled person at the time.
On a personal level I didn't feel able to return to my family home for various reasons, but mainly because I felt I'd put my elderly dad more at risk as he is not able to nor do i want him to assist me with personal care. Therefore i would've been putting him more at risk by my support team having to come into his home. Almost 3 months into lockdown and i know i have been really fortunate. At present i use 3 different sources of support, one provider for my the majority of my support, another to assist with work related tasks and i employ PA's to support me with social activities. To date none of my support has been too badly affected by covid-19. (Fingers crossed it stays that way!) it's still the same staff team who support me from both providers and although i haven't been able to go out and about as i normally would i have been able to work from home and my PA's have been helping me find activities at home. All of which have helped me to maintain positive mental health
Despite new legislation being published for Self Directed Support and Jean Freeman, the, Cabinet Secretary for Health and Sport stating that support packages should not be being cut during the covid-19 crisis, the reality is this is not the case. The Covid-19 related Self Directed Support guidance outlines a further six principles as well as those already stated in the 2013 Self Directed Support Act. These principles are:
To maintain existing arrangements for care and support
To maximise flexibility and autonomy for the supported person in meeting agreed outcomes To minimise bureaucracy and administrative processes surrounding SDS option 1 and 2 as far as possible
To ensure Fair Work principles are applied to the Personal Assistant (PA) workforce, PA employers and contracted services
To maximise and support the capacity of the PA workforce during the pandemic period, retaining PA and provider capacity long term
To ensure equality of access, choice and control across all Self-directed Support Options To support efficient and sustainable use of funding
This recent legislation, published by the Scottish Government and COSLA, has yet to be seen by some local authorities, so how can they implement it? As someone who relies on support for all aspects of daily living. I completely understand why support providers have felt they have had to focus on ensuring 'essential care' is provided in these unprecedented times eg. personal care and mealtime support but to me that raises two questions:
What is 'essential 'and who decides this?
Where does this My Support, My Choice ethos come into the current situation?
Several disabled people led organisations, as well as others who are involved in supporting this vulnerable group have been conducting research into the impact of covid-19 on their support. A survey conducted by In Control Scotland illustrated that out of 52 respondents only 10% said that there support had not changed during the pandemic whilst 33% said they are now receiving less support than before the crisis. 22% of respondents said they are now receiving no support with only 2% stating that their support allowed flexibility during the crisis. Focusing on the impact on mental health In Control Scotlands survey also illustrated that only 2% feel really positive about the state of their mental health at present whilst almost a quater of respondents feel the state of their current mental health is average.
These results were also echoed by the Glasgow Disability Alliance who conducted a similar survey by on a larger scale. This survey illustrated that 40% of disabled people so far are worried about food, medication or money. existing poverty and financial exclusion. Isolation, already twice as high amongst disabled people, is now even more of a concern with over 72% worrying about becoming acutely isolated. This was partly because many disabled people have no internet access, and many rely on others for support with day to day tasks and looking after themselves. While lives clearly depend on reducing our contact with others, isolation is a huge worry, with knock on impacts on our mental and physical health, and resilience
All of the findings relate back to the fact that during the Covid-19 crisis disabled people have no choice around their support. i completely understand that for many of us, whether we have a disability or not, we aren't able to participate in the social activities we enjoy. However it seems that for a lot of people who rely on support, they arent being giving the choice as to whether they can use support differently. This could be something as simple as having support for an hour or so a couple of times a week just for someone to have a cup of tea and a chat with someone who relies on support or supporting them to enjoy a social activity at home...Anything that would help their mental health stay positive. Instead support is being cancelled for the majority of people unless deemed 'essential'. is promoting positive health not essential and is it not down to the choice of the individuals receiving the support to choose how this is achieved for them especially through these unpresidented times?
As we move through this time, their is already talk of future pandemics that the world may face...One thing that i feel has to be taken from this one is how disabled people and their families have or haven't been supported as the case may be. We can't go back to how it was or stay like we are now. The human rights of disabled people haven't changed, neither has their right to receiving support or their choices around how they use their support or how this is provided etc, whether we are living through a pandemic or not.
