In 2018 We published our Working Together to Help Our Children Report. We included a case history of a boy we called Robert, who is diagnosed with FASD and placed in residential care at that time. His grandparents were (at that time) involved in a harrowing court ordeal to prevent their grandchild being taken into care after they had sought help for him. We thought it was important to provide an update on the case for the Care Review*.

To read the original case history please go to page 37 of this report.

Robert’s grandparents had battled hard for their grandson’s FASD to be diagnosed. In costly court proceedings the local authority denied the diagnosis and blamed them for their grandson’s extremely challenging behaviour (which made mainstream school impossible). The Judge made a S31 Care Order, which resulted in the Special Guardian Order being annulled. There were never any concerns about the grandparents day to day care of their grandchild and they had successfully obtained an EHCP for him in 2018. The Judge ordered another assessment from an FASD specialist. The new specialist gave an even stronger diagnosis of FASD – not just a co-diagnosis.

Initially the local authority wanted the grandparents to attend the CLA reviews and care team meetings but suddenly, without explanation the child’s social worker informed the grandparents they could not attend the care team meetings. The problem with the CLA meetings, which the grandparents are still asked to attend, is the focus is only on what is positive. The child’s grandparents are not able to challenge any of the decisions being made about the child’s care planning and feel helpless and powerless.

The local authority have not fully accepted the FASD specialist’s report and diagnostic findings and pursued an ADHD diagnosis within the care home environment where challenging behaviour and meltdowns continued. An ADHD assessment was conducted, and based on what the grandparents had told clinicians initially the child was given ADHD medication.

The grandparents contact with their grandchild was reduced by the social worker to one hour once a fortnight (from two hours previously) and they are now informed their grandson doesn’t want to see them. They don’t understand why this is as he has always looked forward to their visits. SG&AT members who are parenting from a distance see this a lot – it can often be a symptom of the child’s ‘loss of hope’ – that can be misunderstood by social workers. Fortunately there is a good relationship with the grandparents and care home staff, despite the frequent staff changes.

Robert’s EHCP was reviewed in February 2019 but it was not updated in the light of a change of school and living arrangements. By November 2020 the EHCP has still not been updated with the local authority stating this was because of Covid.

Robert’s grandfather says:

“I do not know if I am able to do anything about this (outdated EHCP) or if it has been sorted since as they will not return my phone calls or reply to emails which I find both unprofessional and in fact abusive towards the needs of my grandson. I feel his rights are being infringed upon and worry about the future for him – for the long term plan is for him is to remain where he is. What is his future when budgets are tightened and the LA do not have a good reputation in regards to supported living when he comes of age. There has still been no life story work done with him and I worry as to how his condition is explained to him given their lack of knowledge and acceptance of it. I do what I can as an active member of FASD UK where I am part of a working group to improve things going forward. As his grandad, all I want is what is best for him – but I am now finding out how difficult that can be when you have a statutory body that refuses to engage and listen, and corporate parenting does not work. The blame culture, without substance, is not helpful. It is now costing the local authority vastly more to keep him where he is, than it would have been to support us in the first place instead of blaming us for the situation, which was not of our making. He had a very chaotic and traumatic start to life, which was compounded by FASD.“

If you can help these special guardian grandparents with legal advice and support then please get in touch.

Please feel free to comment and share your views and experiences as parents or guardians – or professionals.

*The Care Review is to be a cost neutral review, and its independent Chair, whose charity Frontline has received more than £70 million from government in the last few years (almost as much as the entire Adoption Support Fund for every adopted and Special Guardianship child/family in England), was made to sign a contract before the review. The contract the Department for Education published was heavily redacted. Article 39, a children’s rights charity, have published useful information on the review on their website as well as discussing the full redacted contract