Learning disability is one of the biggest issues in my life, personally and professionally. I grew up caring for a family member who has profound learning difficulties and non-verbal Autism. I observed first-hand from a young age the oppression and discrimination faced by people with learning disabilities on a daily basis. The aspect that aggrieved me most was not the occasional unkind comments or looks of contempt, but simply the treatment of my family member by some as a ‘lesser mortal’. For those of us who have a learning disability or who have a family member with a learning disability, we are fully aware of the vital contribution to society that people with learning disabilities offer, which is certainly no less so than any non-disabled individual.
In my teenage years, I witnessed the brutal welfare cuts facilitated by the Conservative government on the resources and support available to people with learning disabilities. I saw the direct impact this had on my own family, as well as many other families in my community. I have always been a firm believer in ‘don’t get mad, get active’. I worked extremely hard at school and university, achieved my L.L.B in 2018 and have recently completed a BSc in Social Work. The entire focus of my life and career, as well as what brings me true happiness, is helping others- particularly those in our society that are classed as vulnerable.
According to Mencap statistics, there are currently 42,000 people in Northern Ireland living with a learning disability. It is important to note that life for people with learning disabilities in Northern Ireland is often not easy in normal times, let alone during a pandemic. As previously mentioned, the oppression and discrimination that is regularly faced- in an employment capacity, personal capacity, social capacity. These are issues which directly impact upon all aspects of an individual’s life.
The Conservative government’s welfare cuts have evidently had a devastating impact on people with learning disabilities. The bedroom tax disproportionately affected disabled people, as well as the replacement of the Disability Living Allowance with Personal Independence Payment. This has had major repercussions for many disabled people. The Belfast Telegraph reported in February 2020 that almost one in four people in Northern Ireland who were previously claiming DLA have now had their benefit taken away during the transition to PIP. PIP payments are not plentiful and many people with learning disabilities are completely unable to work, or working in a reduced capacity with limited income. Therefore, this highlights how difficult it can be for themselves and their families to manage the endless financial costs that life in 2020 demands. It can often be extremely difficult for people with learning disabilities to access employment in the first instance, as Mencap reports only 7% of people in the UK with learning disabilities have jobs.
Governmental cuts have also had a major impact on special needs schools and day centres, with issues faced such as budgets being heavily affected, as well as the knock on effect on staffing levels. As people with learning disabilities can be dependent on the staff and resources available to them, this reform and denial of resources previously available to them can prove upsetting and worrying for them and their families.
It is common knowledge that Northern Ireland has long had a crisis in mental health provision, and this is also a prevalent issue amongst people with learning disabilities. Isolation and depression are common problems, with 93% of those interviewed by UK charity The Foundation for People with Learning Disabilities in 2012 stating that they felt lonely and isolated.
For people with learning disabilities who have physical health problems, accessing treatment can often prove difficult. They may find environments such as GP surgeries and hospitals frightening, and struggle to understand the reason why they are there. It can be particularly difficult for people who are non-verbal to express what is wrong, and for medical staff to be able to treat them accordingly. This is perhaps why research by Mencap shows overall shorter life expectancies for people with learning disabilities compared with those who are not disabled.
Funding for people with learning disabilities continues to be lower in Northern Ireland than in any other region of the UK, despite higher levels of need. Only 6% of the total Health and Social Care spending was allocated to learning disability in 2016.
A large number of people with learning disabilities in Northern Ireland live in care homes. Living in care evidently brings its own issues, and there is always concern for the potential of abuse and harm. There have been recent calls for a public inquiry in the wake of 1,500 reported crimes against disabled people at Muckamore Abbey hospital.
Historically, people with learning disabilities were often removed from their families and communities. More recently, within developed countries there has been strong progression in involving disabled people within their communities, with a focus on care in the community and action towards greater inclusion in mainstream society. However, many people with learning disabilities unfortunately continue to report feeling excluded and being made to feel ‘different’ from their peers.
It is certain that all of these factors have been exacerbated by a global pandemic. Isolation and mental health problems amongst people with learning disabilities will be of great concern during this time. They are being looked after within the limits of family homes or residential homes, and unable to access resources they typically would, such as respite or access to day centres or special needs schools. People with Autism in particular have a strong reliance on ‘routine’ and this deprivation of access to resources they enjoy and often depend upon, will have a devastating impact on many.
Many vulnerable people have been told to ‘shield’ for long periods, and this brings issues for those individuals who simply cannot understand why they are unable to take part in the activities they usually enjoy. It can be very difficult for families to get shopping, access medical treatment etc while shielding a vulnerable person.
There have been many families across Northern Ireland who have received little guidance since the beginning of the pandemic. They have received little information about what to do should their family member have to be taken into hospital, and will they be allowed to accompany them into hospital if so? This is extremely concerning, especially when one considers the alarmingly high death rate of people with learning disabilities during this time period.
Whilst there has been grave concern raised over the widespread failings regarding the high number of deaths of elderly residents in older people’s homes, there has not been the same focus given by the media to those with learning disabilities who are living in care also. In England, the Care Quality Commissioner has estimated that deaths of people with learning disabilities have increased by 134% in England during the coronavirus pandemic. Whilst, yes, this is an unprecedented situation which no government has faced before, this widespread failure to protect the lives of our most vulnerable people is unacceptable in any civilised society. It should cause the revulsion it deserves, and highlight the drastic need for governmental reform in care and provisions available for vulnerable people, especially in the event of a second wave of Covid-19 or future pandemics in general.
Many people I have spoken to personally have expressed astonishment at the lack of information provided during the pandemic, and feel disgusted as to why so many people have died. Many feel that those in care homes have simply been abandoned by the government. This is not good enough, and we must demand better support for our most vulnerable people. The lives of disabled people are just as valuable and important as those who are not disabled, and we must not accept any system which suggests otherwise. In the words of Mahatma Gandhi, “The true measure of any society can be found in how it treats its most vulnerable members.” Our most vulnerable people deserve to be treated with the respect and integrity they deserve, and this pandemic has only served to highlight that they have not received it. Far, far more must be done.
Katy Crawford is 24 and from County Derry. She has recently qualified as a social worker. She also holds an LLB and has a strong interest in Irish history, politics and disability rights.