Parents of youngsters with profound disabilities are protesting against changes in the way residential short breaks are allocated, which they say have taken away a 'lifeline' and left some of them with 50pc fewer respite hours or, in some cases, no residential respite at all.

Eastern Daily Press: Single dad of three Michael Regan with eleven-year-old Maddison, who has Mowat Wilson syndrome. The youngster, who previously spent three nights a month a Squirrels, Aylsham, has had all residential respite care cut. Picture: KAREN BETHELLSingle dad of three Michael Regan with eleven-year-old Maddison, who has Mowat Wilson syndrome. The youngster, who previously spent three nights a month a Squirrels, Aylsham, has had all residential respite care cut. Picture: KAREN BETHELL (Image: Archant)

In March of this year, council chiefs announced changes affecting up to 1,000 Norfolk youngsters.

These meant that the £1.7m budget for disabled children would need to be used for more children, with each family allocated cash to pay for activities according to a point-scoring system.

But, while the council said these changes would not affect residential short breaks, parents claim they have been left 'devastated' by the drastic cuts in the number of hours respite they have been allocated.

Eastern Daily Press: Josephine Rudd of Horning, with ten-year-old daughter Alyssia, who has profound and multiple disabilities. The mum-of-four has had her respite entitlement reduced from 60 nights a year to just 28. Picture: KAREN BETHELLJosephine Rudd of Horning, with ten-year-old daughter Alyssia, who has profound and multiple disabilities. The mum-of-four has had her respite entitlement reduced from 60 nights a year to just 28. Picture: KAREN BETHELL (Image: Archant)

Sarah Dewhurst, whose 14-year-old daughter Alice has cerebral palsy and is unable to speak, see or sit up unaided, was among a group of Norfolk parents invited to put their views forward at a Norfolk Clinical Commissioning Group (CCG) 'engagement' event looking at how respite care was delivered.

Each child then had their case put before a panel by a social worker, before a decision was fed back to families on how much residential respite would be allocated.

'A lot of tears went on at those feedback meetings, including from myself,' Ms Dewhurst said. 'They were talking about people having respite in their own homes, but that isn't the same as having overnight care which gives you valuable time to spend with your other children and give them the attention they need.'

Eastern Daily Press: Sam Wheeler of Dereham with 12-year-old son Kian, who is deaf blind and has global developmental delay. The mum-of-five has received no respite care since December. Picture: KAREN BETHELLSam Wheeler of Dereham with 12-year-old son Kian, who is deaf blind and has global developmental delay. The mum-of-five has received no respite care since December. Picture: KAREN BETHELL (Image: Archant)

Ms Dewhurst, who lives at West Runton, near Sheringham, said the 'straw that broke the camel's back' was when parents received a letter last month saying that the new model, which is jointly funded by Norfolk County Council and North Norfolk CCG and delivered by Norfolk Community Health and Care NHS Trust, would mean not only would respite hours offered by residential unit Squirrels of Aylsham be reduced, but its sister unit, Little Acorns, would cease to offer residential respite in September.

Single dad-of-three Michael Regan, of Sheringham, learned a few weeks ago that, from September, he will no longer be entitled to the 'life-saving' three nights a month residential respite care he receives for his 10-year-old daughter Maddison, whose condition – Mowat Wilson Syndrome - means she has global developmental delay and problems resulting from an operation to remove part of her bowel and intestines.

'The impact on my family will just be huge,' he said. 'I've been told that if I can find my own respite then I can have care at home, but that is no help to me.'

Eastern Daily Press: Sam Wheeler of Dereham with 12-year-old son Kian, who is deaf blind and has global developmental delay. The mum-of-five has received no respite care since December. Picture: KAREN BETHELLSam Wheeler of Dereham with 12-year-old son Kian, who is deaf blind and has global developmental delay. The mum-of-five has received no respite care since December. Picture: KAREN BETHELL (Image: Archant)

Mr Regan added that, since his daughter had been spending time at Squirrels the change in his seven-year-old son Paicey had been 'incredible'.

'I think I was living in a bubble with Maddison and he's a different boy now,' he said. 'He was constantly in trouble at school, but, because of the respite, I've been able to go swimming and play football with him and his behaviour has improved no end.'

Ms Dewhurst said: 'What these changes mean for us is that it has been whittled down to only 25 families who qualify and Squirrels will go from opening 51 weeks a year, to 29, only one of which is in the school holidays.'

Eastern Daily Press: Lisa Harvey with son Daniel, 10, who will be receiver fewer hours residential respite care as a result of cuts. Picture: KAREN BETHELLLisa Harvey with son Daniel, 10, who will be receiver fewer hours residential respite care as a result of cuts. Picture: KAREN BETHELL (Image: Archant)

'We are shocked at what has happened,' she added. 'I can't help thinking that surely respite care for society's most vulnerable children should be a priority.'

Ten of the families affected by the changes have written a joint letter of complaint, also meeting with North Norfolk MP Norman Lamb, who has promised to take up their concerns with the CCG.

He said: 'Those weekend breaks are a lifeline for families, but, to a degree, the CCG is caught between a rock and a hard place; the funding is just not sustainable and, ultimately, the blame lies with the government.'

Eastern Daily Press: Lisa Harvey with son Daniel, 10, who will be receiver fewer hours residential respite care as a result of cuts. Picture: KAREN BETHELLLisa Harvey with son Daniel, 10, who will be receiver fewer hours residential respite care as a result of cuts. Picture: KAREN BETHELL (Image: Archant)

Emma Jones, of NHS North Norfolk CCG said: 'We have spoken with all families who currently receive residential short breaks as part of a clinically led review. The new arrangements mean a fairer distribution of NHS funding. This means that all families are treated equally, with a consistent approach and according to their clinical need. In addition, families may also be eligible for social-care funded short breaks and support. We have worked closely with the families and we admire the strength and dedication they show.'

Assessment process 'was awful'

Eastern Daily Press: Single dad of three Michael Regan with eleven-year-old Maddison, who has Mowat Wilson syndrome. The youngster, who previously spent three nights a month a Squirrels, Aylsham, has had all residential respite care cut. Picture: KAREN BETHELLSingle dad of three Michael Regan with eleven-year-old Maddison, who has Mowat Wilson syndrome. The youngster, who previously spent three nights a month a Squirrels, Aylsham, has had all residential respite care cut. Picture: KAREN BETHELL (Image: Archant)

Dereham mum-of-five Sam Wheeler, whose 11-year-old son Kian was left deaf-blind and has cerebral palsy and global developmental delay after contracting meningitis at four days old, had, up until six months ago, been receiving respite care at a centre run by the disbility charity Scope.

However, when the charity's contract was not renewed, she had to go before a panel, which approved residential respite for Kian at Squirrels.

'We had introductory visits but I was then told funding wasn't available and he hadn't got a place after all,' Mrs Wheeler said.

She then had to go through the assessment process a second time and has now been offered 28 days' residential respite a year.

'It was awful,' she said.

'The way I get on with life is by taking one day at a time and it just meant going back over Kian's life and dragging all those emotions up again.'

Mum-of-three 'devastated' by cuts

Josephine Rudd, whose 10-year-old daughter Alyssia was left with profound and multiple disabilities after being born with the rare brain condition lissencephaly, has had her residential respite hours cut from 60 nights a year, to 28.

She said: 'I was devastated, I cried in front of the panel.

'I have three other children and respite is a lifeline; it is something to look forward to each month and it means that you can do 'normal' things like going to the beach or the cinema - it's having that freedom to do what you want to do for a couple of days a month.'

Mrs Rudd, who lives at Horning, said that because Alyssia is partially sighted, has to be fed and is unable to speak or sit up unaided, going out as a family is almost impossible.

'If you have a child who literally can't do anything, then it does take a big toll on your family,' she added.