Boy with FASD missed out on support because council said he had ‘wrong’ type of disabilities

A Sussex boy missed out on vital support because the local authority said he had the ‘wrong’ type of disabilities, the Local Government and Social Care Ombudsman has found.

The boy, who has Foetal Alcohol Spectrum Disorder (FASD) and Attention Deficit Hyperactivity Disorder (ADHD), did not have his social care needs met because the county council said it only supported autistic children or children with severe learning disabilities.

The boy’s conditions mean he is prone to volatile outbursts, can be aggressive at times and his behaviour is often unpredictable. He was excluded from school in February 2020, and although he has been provided with home tuition, he has been out of full-time education since. He is now due to start at a new specialist school in September.

The boy’s adoptive parents complained to the council because it refused to assess them for support for respite care, direct payments, or a personal budget. The council said as the boy did not meet its strict criteria, he was not eligible.

During the Ombudsman’s investigation into the family’s complaint, the council started to provide six hours a week of respite care and reimbursed some of the care the family had previously paid for.

Sandra Butcher, Chief Executive of the National Organisation for FASD, said the boy’s case was an important one.

“We hear all the time about people with FASD being denied access to services targeted for those with 'autism and learning disabilities'.

“[Those services] should be open to all neurodevelopmental conditions, including FASD, so not dependent on testing <70 on IQ.”

“FASD is lifelong organic brain damage resulting from alcohol-exposed pregnancies, it affects how a person processes things. Many have IQ over 70 but need support for executive function, sensory integration, adaptive behaviour and more than 400 related conditions.”

The Ombudsman’s investigation also found there was delay in finding a suitable school for the boy, which meant he has been without a suitable school for 16 months, and without full-time education for 13 months. The council also delayed providing alternative education to the boy for two months.

The council was also found to be at fault for not assessing the boy’s needs promptly when he was excluded from school. It took 23 weeks to assess his situation – and then only backdated its support by a month. The council also failed to carry out its own assessment of the appropriate level of respite care needed.

Michael King, Local Government and Social Care Ombudsman, said he was concerned that councils were “gatekeeping” access to vital services.

“By applying criteria to people requesting assessments for their children it is placing barriers in front of them.”

“Throughout the time the boy was out of school, it appears the burden of finding a school placement has rested on the boy’s mother.

“The council has a duty to ensure there is sufficient educational provision available in its area to meet demand. The lack of suitable placements for the boy in the council’s SEN schools suggests it is not meeting this duty.

The Local Government and Social Care Ombudsman’s role is to remedy injustice and share learning from investigations to help improve public, and adult social care, services.

In this case, West Sussex County Council has agreed to apologise to the family and pay them £1,250 for the gatekeeping of its assessment process and the delays this caused, along with the delays in its complaint handling and provision of respite care. It will also reassess the current respite provided to the family and decide if this is appropriate, as well as pay them a further £1,800 for the boy’s missed education.

The Ombudsman also has the power to make recommendations to improve processes for the wider public. In this case the council has agreed to review its process for assessment to ensure it is meeting its duties for all children and not just those who fall under specific criteria.

The council will also complete an audit or review of the educational provision available in its area for children and young people who have SEND to ensure there are enough places to meet demand.