‘Please take this message to the powers that be: families caring for young adults with severe needs have no escape’

As lockdown was lifted, 23-year-old Krishna Parekh’s loved ones got some respite that, after months indoors, they so badly needed – until Leicester’s restrictions were restored. Tess Rushin reports

HEMANT Parekh and his wife, Seema, are fulltime carers for their disabled son. Krishna, 23, has cerebral palsy and is wheelchair-bound. He also has what his parents describe as “severe autistic tendencies”.

Keeping Krishna to a strict routine is vital for the survival of the family which, as well as Hemant, Seema and Krishna includes 19-year-old Yasmin.

That routine has, until recently, included Krishna attending day care centre and college.

But since lockdown struck on March 20, the family, who live in Hamilton in the city, has seen their coping mechanisms tested almost beyond endurance.

“We have dealt with tantrums, breakdowns, violent outbursts, all behind closed doors,” said Hemant.

“We are dealing with a 23-yearold with the strength of a young man and the tantrum capabilities of a five-year-old child.

“Lockdown and its implications mean nothing to him. Being on the autistic spectrum, all he cares about is some structure to his day.”

Prior to lockdown, Krishna attended Leicester College three days a week to learn life skills to help with day-to-day tasks such as cooking, washing up and using the washing machine.

On the other two days of the school week, he attended Creative Care, in Melton Road, Thurmaston. Transport would pick him up from the door and bring him back, giving Krishna something to look ‘NO SOONER DID SOME RELIEF COME, IT WAS TAKEN AWAY’: Wheelchair-bound Krishna Parekh with his sister, Yasmin, and parents Seema and Hemant forward to and his parents some respite.

As lockdown hit, the family resigned themselves to getting through the weeks with no respite care, waiting for the day when life would return to normal.

“Finally, as the anxiety was reaching a crisis high and things were starting to escalate, we saw a glimmer of hope as lockdown eased and some provisions were made for him starting on June 15,” said Hemant, 50.

Krishna’s parents told him he would be returning to day care and on June 15, he returned, but only for two weeks. Just as things started to look up, Leicester’s local lockdown happened.

Hemant said: “No sooner did some relief come, it was taken away by this second decision to lock down Leicester again.

“On June 30, the phone call we were dreading came, and the care centre where Krishna goes informed us that as of July 1 they would not be able to cater for Krishna again, even though they had prepared everything for him and all his needs in a Covid-19safe environment.

“We had just got him used to the first round of lockdown and it hit us again.”

Hemant said his heart was broken when he walked into the bedroom after the family got the news to find his wife “crying her eyes out because all day she’s watched my son stare out of the window waiting for the day care staff to come and pick him up”.

Hemant said: “From 10am until 2pm he refused to stop staring out of the window, constantly repeating, ‘They will be here soon.’

“Finally, we braved the outcome and tried to explain to him they are on holiday and they will collect him after they come back.

“This was like lighting a fuse on a bomb, which had repercussions for at least an hour-and-a-half afterwards.

“I dread to think what reason we will give tomorrow for not sending him again.

“It’s like groundhog day with no escape, the only outcome being one of fear and another endless day tomorrow and the day after and the day after that.

“What frustrates me is at no stage has any thought gone into provisions for families like ours.

“When have the government made us a priority? When have