Our Chief Executive Lesslie Young looks at the numerous ways the ongoing COVID-19 pandemic affects those with disabilities and life-long conditions including epilepsy.
A global pandemic, natural or economic crises always disproportionately affect the most vulnerable people in communities.
People with disabilities and life-long conditions, including epilepsy, have been worst hit by the ongoing global pandemic and there is a real expectation this will continue well beyond.
Widely, social interactions have been hugely restricted. For the most vulnerable they have all but disappeared. They have also been further disadvantaged by additional layers of restrictions dependent on where they live, reside.
This has, at best, slowed the rate of hard-earned progress toward the independence that many of us take for granted, at worst brought it to an abrupt halt.
There are many examples; supported essential travel, shopping, life skills to name but a few.
Savings to be made, but at whose cost?
So much has been happening and continues to happen from home and digitally.
The importance of home schooling with all the support needed to make that happen is, quite rightly constantly assessed, reviewed, and challenged to ensure the best outcome in difficult times.
Have we seen the same attention paid to and vigorous responses made in the context of the vulnerable?
Every social interaction, for so many, is not solely a wellbeing experience but is also a learning opportunity, especially for those who need support to enable them to experience and benefit from those interactions.
Has the same vigour been applied to maintaining their wellbeing and learning as in the mainstream context?
Has the same financial support been given to maintaining their wellbeing and learning as in the mainstream context?
The pandemic has provided us all with many challenges. Equally, it has provided us with many opportunities.
With the use of the existing support hours and creativity which we have all had to employ, existing skills could have been maintained and in many cases built on, with additional new skills being learned.
This proactive approach to at least ensure the maintenance of skills, would reduce the regression or plateauing which will become all too evident.
There have been opportunities for some businesses, agencies, and individuals to make savings, to a greater or lesser extent, during the pandemic.
For those lucky enough to retain employment, some may be saving money.
This is most definitely not the case for all. For the vulnerable and those dependent on financial support from the government, there has been much done “because of Covid” such as a reduction in support hours and an increase in shared support hours.
Is this approach benefiting those who need support or those who provide the support?
Is because of Covid really an answer?
Some people in this situation, may be able to increase or regain independence however, it is a real possibility they will not.
Like the rest of those who are lucky enough to be saving and benefit from that they will in fact, be penalised, because of an increase in their client contribution, based on savings, to their care provider and or local authority.
Many people will have made home improvements, be planning a once in a life-time holiday because of their savings.
Should those with disabilities and life-long conditions including epilepsy, in our inclusive society, not be able to look forward to something similar?
Their social learning opportunities have all but disappeared. Their physical and mental wellbeing has been hugely impacted.
Accepting that has been this case for all we must also accept their starting point was already so much further behind. Is “because of Covid” really an answer?
Is “because of Covid” yet another opportunity to make funding cuts in an already underfunded sector to the detriment of those who need support the most?
Or is the PPE, policy protection equipment failing, showing the real answer in the greatest relief – the most vulnerable unfairly pay the greatest price, again?
It is important to see through the guise of the pandemic and remember so called temporary changes being made may be hard to take back if they are saving money for organisations and local authorities.
In summary, the social care sector is seeing an increase in digital delivery, shared roles and reductions in staffing and delivery hours.
As one of the organisations delivering vital services, we must ensure the people we support are consulted frequently and work to ensure this person-centred approach remains consistent across the social care sector.
Adapting services should always be about better meeting people’s needs and not about saving money
The Epilepsy Wellbeing Service is unique in the way we work with people who are isolated and unable to access other services.
All our services are designed to continuously assess the changing needs of people with epilepsy.
Using digital access to support people with epilepsy during the COVID-19 pandemic has demonstrated the potential to extend our geographical reach and offer the service to more people.
The team conducted a ‘Wellbeing Lockdown Survey’ in October 2020, asking participants how well they have been supported by the new temporary ‘digital access’ model.
Results showed that the digital element can meet the fluctuating needs that people with epilepsy have daily, giving them the choice of online access to emotional support and additional therapies when they cannot make it to our Glasgow centre.
Reasons vary why people cannot on some occasions come ‘in person’, these include injury from a recent seizure, low mood, or increased anxiety levels.
Looking toward the future people must be given the opportunity to resume their activities in the same way.
Digital delivery is not a replacement for in-person service but an addition to a blended service to better suit people’s individual needs.
