Fiighting Back-Chapter Three : The effect on families

As a direct result of the actions by Roy Meadows and others, as mentioned in my previous blog chapter, parents of autistic or disabled children routinely face a culture of blame when attempting to seek help for their children.

Research conducted by Professor Luke Clements and Ana Laura Aiello published by the University of Leeds and Cerebra on 20th July 2021 entitled “Institutionalising parent carer blame: The experiences of families with disabled children in their interactions with English local authority children’s services departments,” painted a damning picture of how a significant number of parents are treated by social care professionals in England.

The extensive report examined 143 social care departments in England and found a lack of training, experience and understanding of challenges families faced. Instead, the “default position” of national and local social care policies was to assume parental failings.” This despite the government stating that its guidance did not imply fault or suspicion.

When families seek additional support for their children , they are usually assessed by a social worker to determine what help they may qualify for. However, many parents of disabled children face suspicion, hostility and prejudice from the outset.

Researchers looked at the children’s services assessment protocols and surveyed more than 90 parent/carer-led support groups. Many parents felt that social care assessments were more like inquisitions , rather than offers of report . It appeared that in many cases the default position from the local authorities was of parental blame from the outset.

They said the process appeared to be focused on parental fitness rather than addressing the support needed, and families often said assessors insisted on speaking to their child alone.

None of the protocols explained the need to change assessment approaches in cases where there was no evidence of neglect or abuse.

The report said its key finding was that the standard approach “locates the problems associated with a child’s impairment in the family”.

It referred to the phenomenon as “institutionalising parent carer blame”.

Parents, quoted anonymously in the report, described the process as “humiliating, bullying and devastating”. One said it was like “the police turning up at your door and [saying] ‘we’ve got a warrant to search your house’”.

In an interview with BBC Yorkshire on the day that this report was published, an interviewee , Mehreen, said the assessment made her feel “incompetent” as a parent

Mehreen, whose seven-year-old son Assad is autistic, tried to get extra support from Bradford Council.

“I was really struggling at home, especially when we went into the pandemic,” said the single mother, from Bingley, West Yorkshire.

She found the assessment intrusive and the questions she faced made her uncomfortable.

“They went into my childhood, my parent’s lives, my personal life before Assad was even born,” she said.

“They really left me thinking whether they are questioning, albeit indirectly, my parenting abilities or my personality or me as a person or if I was fit even to be a parent to Assad.

“It made me feel incompetent as a parent and that’s not something I’ve felt before.”

She said assessors asked on three occasions to see Assad’s room, which made her suspect they were looking for a safeguarding issue.

A spokesperson for Bradford Council said it was committed to ensuring disabled children got the best support and were safe.

“This means that there are times when we will need to see a child or young person’s room when we are doing an assessment to establish what their needs are.

“We know that sometimes families may find this difficult but our intention when doing this is to make sure we do a thorough assessment. It is never to blame parents.”

Sir Ed Davey MP, patron of the Disability Law Service (DLS), in a key message at the start of the University of Leeds report , said the issues highlighted were similar to those in a report by the DLS in 2020.

He said national guidance was “defective” and the “root cause” of the problem. This was “leading to parents being blamed when they ask for care for their disabled children, instead of receiving the help and support they deserve. I call upon the education secretary to address this issue as a matter of urgency.”

Tracy Elliot, head of research at Cerebra, a national charity helping children with brain conditions, said the assumption of parental failings was of great concern. “It ignores the fact that disabled children often have complex medical, educational and social support needs and face many barriers to their participation in society,” she said.

A Department for Education spokesperson said the Working Together (2018) guidance sets out how social care professionals should assess a vulnerable child’s needs.

“It does not imply any fault or suspicion of parents of disabled children,” they said. They added that social workers should receive training and support to work effectively with children and their families.

“So that every child, including those with additional needs or disabilities, has the chance to grow up in a stable, loving home where they receive the care and support that enables them to fulfil their potential.”

However, despite these assurances from the DoE spokesperson, the fact remains that “under the existing guidance, there is no requirement that those assessing the needs of disabled children have any expertise or experience in a particular condition, so that the needs of the disabled child are accurately identified (DoE “Working Together to Safeguard Children, 2018, para 5.25).”

Indeed, Cerebra reported that “parents who have approached their local authority for help in order to address the additional barriers they encounter as a result of their child’s impairment.. find (from the outset) they are treated in a manner that suggests to them that they are considered to be neglectful and/or abusive parents (Bahri, Clements , Aiello and Hutchinson, Cerebra, 2020).

So where does this leave the parents?

The following anonymous poem paints a disturbing picture:

What I’m guilty of: An FII Poem

Guilty of loving my boys too much.

Guilty of knowing too much on things.

Guilty of having too much understanding of how there is always a reason for behaviour in kids.

Guilty of being too literal and not being able to play the games the rest of society does.

Guilty of being always open and honest which most really don’t like.

Guilty of putting my foot in it lots due to being me.

Guilty of always believing that. knowledge and educating yourself on things matters.

Guilty of fighting too hard to prevent present and future harm for my boys

Guilty of always following my boys lead and needs more then caring on my own.

Guilty of caring to believe that people deserve another chance and with love they can turn themselves around.

Guilty of not really understanding what I’m meant to have done wrong.

Guilty of believing that truth should always conquer over lies.

Good should conquer evil.

Guilty of being resilient but oh so tired .

Guilty of desperately searching for answers and help for “my son” like only a mother would care to do.

Guilty of losing too much sleep while being squashed all night by two boys who need the comfort of their mummy all night long.

I’m guilty of being me.

In my next blog chapter, I will begin to look at moving forward to redress this social injustice.

References:

Bahri, P., Clements, L., Aiello, A.L. & Hutchinson,, "Unlawful restrictions on the rights of disbled children with autism to social care assessments," (Cerebra, 2020).

Clements, L., & Aiello, A.L. , "Institutionalising parent carer blame," (University of Leeds, Cerebra, 2021)

Department for Education, "Working Together to Safeguard Children", 2018