Parents slam ‘monstrous’ changes to autism referral rules

SEND parents have criticized new rules that mean children must be in ‘crisis’ before they can be referred for an autism evaluation in the Bristol area.

Parents have condemned rule changes by NHS chiefs that mean children must now be in “crisis” before they can be referred for an autism diagnosis in the Bristol region.

Healthcare provider Sirona has introduced strict new criteria governing who is eligible for its service after seeing a 350% increase in young people waiting for an evaluation in the last two years.

But horrified parents and carers say the move, which came “without warning”, is “monstrous” and “will cost lives”.

They have launched a campaign group called Assess for Autism along with a crowdfunding appeal to challenge the decision in court, which at the time of writing was fast approaching its £3,000 target.

Under the six-point criteria, which went into effect March 1, children will only be referred if they have “serious and long-lasting” mental health issues, such as being a high risk to themselves or others, are involved in juvenile delinquency , have very low levels of communication, are in care or on a child protection plan, or if their education or family is falling apart.

Even those who are referred face a two-year wait to be seen in Bristol, North Somerset and South Gloucestershire (BNSSG).

Sirona and the Integrated Care Board (ICB), which formally approved the new policy, insist it is necessary because families are waiting too long for an initial assessment and that resources can now be focused on those with the “greatest clinical need or (who) are the most vulnerable”.

He says the approach is now more in line with services elsewhere and that young people do not require a diagnosis to meet their needs, a claim parents dismiss as “nonsense”.

‘Swift legal action the only option’

Assess for Autism says Sirona’s own calculations show that 60% of young people in Bristol will miss out on being assessed and that suicide rates are much higher in autistic communities, with undiagnosed people at much higher risk. .

An Assess for Autism spokesperson said children would now need to be at a crisis point before being referred.

“It is deeply concerning that the ICB has chosen to ignore the overwhelming evidence of the positive impact that early diagnosis can have,” the spokesperson said. “By implementing this regressive policy, the ICB is effectively creating a mental health crisis among the city’s young population.

During Bristol’s last SEND inspection at the end of 2022, Ofsted concluded that the relationship between families and SEND services remains ‘fractured’.

“The decision to restrict referral for autism evaluations will only exacerbate this problem,” the spokesperson added. “Families were not consulted about these changes and swift legal action is the only recourse we have to change this policy.”

“We cannot allow the ICB’s decision to remain unchallenged and we must come together as a community and take action.”

They urged the local board of health and Sirona to reconsider the policy and work with parents, caregivers and schools to develop a “more compassionate and inclusive approach” to autism waiting lists.

‘Not eligible until broken’

Sirona was criticized for its decision at two recent board meetings.

The chairman of Bristol City Council’s health scrutiny committee, Graham Morris, a Conservative councilor for Stockwood, said he was “very disappointed in the way it has been presented to us”. He noted that Sirona had been on the committee in December but had given “no warning.”

Meanwhile, the leader of the Lib Dem group, Jos Clark, raised questions at the meeting, on Monday, March 20, about the legality of Sirona’s move. The councilors heard that the chairs of the three local health and wellness boards, which are also part of the BNSSG Multi-Agency Integrated Care Association, were seeking a meeting with Sirona to hear more details, the implications and what could be done about it. regard.

Three local activist mothers shared their stories at the meeting, explaining how hard they had to fight for their children to have an autism diagnosis and support, even before the latest rule changes.

Fiona Castle, a mother of two, from Horfield, whose youngest son is autistic, said her 11-year-old son was diagnosed at age four and received an education, health and care plan (EHCP) through despite being previously told by a health visitor that he was newly “boisterous.”

She had 1:1 support in elementary school and now attends an autism specialty high school.

“The journey for us as a family, post-diagnosis, has been long and difficult,” Castle said, adding that it hurt her health, relationships and job prospects. “I had to fight for everything my son was legally entitled to and I have first-hand experience of the council’s ‘broken relationships with parent caregivers.’

“I can only imagine how difficult this journey will be for families without an autism diagnosis, who are not even eligible for a diagnosis,” Castle added. “The idea that they’re not eligible until they’re effectively broken, and then they have to wait two years, is monstrous.”

Meanwhile, Jai Breitnauer, of Bedminster, whose 14-year-old son is autistic and an 11-year-old is on a waiting list to be tested, said the referral policy change is “naive, inappropriate and dangerous” and would “cost lives “.

“Research shows that autistic people are twice as vulnerable to suicide and in undiagnosed autistics the risk is exponentially higher,” he said.

Jen Smith, former vice president of the advocacy organization Bristol Parent Carer Forum, described the new policy as “one of (Bristol’s) worst decisions” in recent years.

“That children and young people in Bristol and other local authorities have to be at a crisis point before they can access an assessment is creating years and years of trauma,” he said.

“This is the time when there should be early intervention: an opportunity to interrupt the predictable path of children thinking something is wrong with them and adults treating them as if something is wrong.”

‘I said this was a decision made’

Sirona’s changes come as South Gloucestershire Council’s cabinet approved the findings of a scrutiny commission task force to improve early intervention for girls with autism.

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Opposition councilor Alison Evans (Labour, Woodstock), who chaired the group, told the meeting on Monday March 13 that she was “alarmed” by the new criteria which seemed “to go completely against our report on the early identification of girls with autism”.

“Now, even to be referred for an autism diagnosis, you now have to be more or less in crisis rather than us having our preventative approach to ensure children thrive.”

Conservative cabinet member for education, skills and employment Erica Williams said Sirona’s new policy “doesn’t undermine (early intervention improvements) but makes things more difficult.”

“If we can, as a full council, express our concerns, we don’t want to wait until it’s too late to intervene,” he said.

South Gloucestershire director of education, language and skills services, Hilary Smith, said the council had been “informed that a decision was being made” and had had no input.

Families ‘waiting too long’

Sirona and BNSSG ICB said in a statement: “There has, for some time, been a steady increase in England in the number of children and young people seeking a referral for an autism assessment or pediatric appointment and this has increased further due to the impact of the Covid-19 pandemic.

“In Bristol, North Somerset and South Gloucestershire, we have seen a 350% increase in the number of children waiting for an autism assessment in the last two years.

“As an Integrated System of Care, we recognize that families are waiting too long for their children to receive an initial evaluation for autism and we do not have the capacity to reduce this.

“We changed our referral criteria so that our resources can be directed to the children who have the greatest clinical need or are the most vulnerable.

“It’s important that we stop accepting more children and youth than we can see and assess, and our new approach has also brought us more in line with services in the rest of the country.

“Children do not require a diagnosis to meet their needs in schools and other settings, and waiting for the outcome of a diagnostic evaluation can delay children receiving appropriate support.

“We are committed to continuing to work together with our partners to identify ways to reduce overall wait times for all families.

“We have also secured funding to employ additional staff to provide additional children’s clinics to further address the long waits.

“Longer term, we are planning to work with partners to ensure neurodiversity is understood and recognized with needs being met without a medical diagnosis.”

It said that any children referred before March 1 would be assessed against the above criteria and that it had set up a helpdesk that can be reached by email at [email protected] or by phone on 0300 125 5560.


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