Darminder Rana – a Personal Case Study

Darminder Rana, my son, has a learning disability having been born with hydrocephalus, which wasn’t diagnosed until he was 7 months old. This delayed his speech, his ability to crawl and walk by 18 months and due to this condition, he would get absences which eventually turned to mal tonic seizures from the age of 7. He attended a learning disability school from the age of 5 which gave him the 1:1 attention he needed to get through school. The schools he attended were brilliant and helped his communication and artistic skills. On leaving school at 19 he attended college twice a week until he left at the age of 23 and then moved to live with me.

During his school years the epilepsy became worse, and it wasn’t until he was 11 that the consultants diagnosed the cause of his epileptic fits. They were due to high pressure applied on the forceps during a breech birth by the midwife which damaged brain tissue on his left temple area.

On moving in with me, he attended day centres five days a week, which was greatly appreciated by the family, as spaces at disability centres are in short supply. This gave Darminder the independence he wanted and a routine that meant he wasn’t stuck at home each day.

We, like many other families who care for adults with learning disabilities, had much of our support completely stopped with the Covid 19 lockdown that started in March 2020. Due to Darminder’s vulnerable status, he was put in the highest category and therefore didn’t leave home for the first 3 months of lockdown. During this period, I noticed that Darminder started to become depressed, sitting hours on end, staring at the floor. It was a devastating time, and we had no clear route out nor any support or advice offered.

I have been running my business Sambhana Care for just over a year and we have a service dedicated to respite care for adults with learning disabilities. It became clear to me that Darminder needed to get out of the house and so I planned regular daily walks. In addition, I arranged the services of a personal assistant from our team, and this gave Darminder activities to do and introduced a routine that was much needed. The impact of this was almost immediate. It helped him come out of his depressed state as he saw a change in his circumstances.

With the eventual first lockdown over he was able to use the outreach programme, set up by Kent County Social service, for the disabled, where his support officers took him out for walks. Darminder was also able to get involved with activities organised by Peppercorns which added real interest to his days and some necessary freedom.

Darminder received his COVID vaccine in January 2021 which gave us the confidence to take him out more and meet up with other family members, in a socially distanced way. We, as a family, have worked really hard to support my son but we have noticed that he has become used to staying at home and has developed more and more introverted tendencies which is an unfortunate side effect of the various lockdowns. This is, without doubt, a mental health issue, which will need addressing and will take time to overcome but we will continue to support Darminder with love and caring as our principal treatment.

There is no silver bullet, we are all too aware of the silent toll Covid has dealt on the adults with learning disabilities community and I speak from personal experience. It seems there is precious little support from the government, and we concur with Sense and Mencap and many other social care organisations, that there needs to be an urgent review of the care and support offered to adults with learning difficulties. We need to start to address the devastating effects of Covid and lockdown on our loved ones.

Mencap research has shown that 1 in 3 young people with a learning disability spent less than an hour outside their homes on a typical Saturday – lockdown has only made this worse.

A recent survey from Sense with over 1000 families and carers found that:

• 62% of families and carers have taken on additional caring responsibilities during the pandemic.
• 75% of disabled adults cared for at home received no information about their support and care being reduced prior to it happening.
• A third (33%) of families and carers said there has been an increase in behaviour that challenges by their disabled family member or friend due to the reduction in support.
• A third (34%) of families have not had any care or support reinstated since lockdown has been lifted.