Declan McMullan cannot move, talk, see or eat

The father of one of Northern Ireland’s “most severely disabled people” has slammed the recent inquisition he and his son faced regarding benefits.

John McMullan from Co Down cares for his 26-year-old son Declan who suffers from a neurological condition that prevents him from having control over his body, known as ‘locked in the box’ syndrome.

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Despite being fully aware, Declan requires around the clock care as he is "unable to move, talk, see or eat.”

John told Belfast Live that he recently received a letter informing him Declan must be reassessed for the new Personal Independence Payment (PIP) which is replacing the Disability Living Allowance.

John expected the change would be made without question after he filled out the paperwork. He didn't expect an in-person visit to assess his son's severe state.

"The form was very easy to fill in because Declan can't do anything other than blink. He is unable to move, talk, see or eat,” said John.

"Doctors told us to imagine being buried alive - that is what Locked-in syndrome is.”

"But three weeks later, I received a phone call from an assessor to ask questions."

John said, "In my opinion, I supplied ample evidence of Declan's disability but I doubt they actually understood what is on that paper.”

“I don't think the people assessing are fit to be doing it,” John said.

John criticized the PIP assessors, and in particular, the scores they gave Declan in certain areas.

"Declan cannot eat and is PEG fed, yet the assessor only gave him 6 points out of 10 for the level of assistance he needs with eating and drinking.”

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"He cannot move at all, only blink, yet the assessor gave him just two out of eight points on whether he needs supervision or assistance managing his therapies.”

"He got 2/8 for needing assistance making budgeting decisions and just 4/8 for needing support in social situations.”

"If a GP is telling the government somebody is sick, who is an assessor to question the doctor's judgment? How can a PIP assessor be properly qualified to override those doctors?”

"Declan's team include occupational therapists, social workers, nurses, doctors, physiotherapists, and psychiatrists. A PIP assessor can't be all of that.”

"I knew Declan was never going to be turned down for PIP. It was just the stupidity of the process and the fact even he did not get full points.”

"Declan is probably one of the most disabled people in Northern Ireland. How disabled do you have to be?"

John recounted the year and a half when Declan was in the hospital. He was not born with this syndrome, it developed when Declan went into cardiac arrest for 8 minutes when he was 19 years old which starved his brain of oxygen.

Doctors had prepared John and his family to expect Declan to live out the rest of his life in a vegetative state until one day Declan began to commute via blinks.

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The first thing Declan communicated was that he wanted to go home.

"That is when our battles began,” John recalled. “We had to fight to have the house sorted out for him and we had to take out a bank loan to buy an accessible vehicle as DLA was not available while he was in hospital. I had to fight for a generator to ensure Declan did not die during an electricity outage.”

"And now PIP. How many times do severely disabled people need to be assessed? If professional people are providing professional evidence is that not good enough?”

"When you are disabled, you don't need to prove you are this disabled."

In response, a Department for Communities spokesperson said: "Each disability assessor must have a minimum of two years post registration experience which must be fulfilled within an approved health profession and receive extensive training in line with DFC guidelines before they undertake PIP assessments.”

"Its disability assessors are healthcare professionals with the required skills and knowledge to carry out PIP assessments across Northern Ireland.”

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"The PIP assessment looks at how individuals are able to complete a number of key everyday activities. Within each activity, there are a number of descriptors, each representing a varying level of ability to carry out the activity.”

"Individuals receive a point score for each activity, depending on how well they can carry them out and the help they need to do so which is based on the evidence provided and collected. The guidance which disability assessors and PIP case managers are expected to apply is set out in the PIP Assessment Guide.”

The spokesperson added: “A robust complaint process is in place for customers who are unhappy with the service provided by Capita which includes the opportunity to escalate a complaint to the Department if they feel it has not been satisfactorily resolved.”

John McMullan and his son DeclanBelfast Live