Bristol children must be in crisis before autism referral

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ASPartOfMe
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22 Mar 2023, 10:22 am

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Children must now be in crisis before they can be referred for an autism diagnosis, parents claim.

The strict new eligibility criteria in the Bristol region comes after a 350% rise in the number waiting more than two years for assessment.

Changes made by the NHS mean children will only be referred with "severe and enduring" mental health issues.

The Integrated Care Board (ICB) said it meant resources could now focus on those with "the highest clinical need".

Some parents have launched the campaign Assess for Autism in protest against the rule change, which mother-of-two Fiona Castle said was "monstrous".

Children will be referred if they are a high risk to themselves or others, are involved with youth offending, have very low levels of communication, are in care or on a child protection plan, or if their education or family is breaking down.

Even those who are referred face the two-year wait to be seen in Bristol, North Somerset and South Gloucestershire (BNSSG), the Local Democracy Reporting Service (LDRS) said.

An Assess for Autism spokesperson said children would now have to be at crisis point before being referred, describing the policy as "deeply concerning" and "regressive".

However, healthcare provider Sirona, which provides autism diagnosis services, and the Integrated Care Board (ICB), which formally approved the new policy, insist it is necessary because families are waiting too long.

They said resources can now be focused on those with the "highest clinical need or are the most vulnerable".


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22 Mar 2023, 5:08 pm

It sounds like an unpleasant but perhaps necessary response to a shortage of suitable providers.


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22 Mar 2023, 5:53 pm

Similar things happen here. In my state, Waiver services for people with developmental disabilities has a wait list of about 20,000 - last time I checked. The wait can be many years, frequently until the child turns 18 and Medicaid services drop away, creating a crisis.

To get a crisis admission, there has to be a documented crisis - and then it still takes many months to actually get services.


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ASPartOfMe
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26 Mar 2023, 9:28 am

Children put at risk’ as NHS autism assessments are cut back

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Under the new rules, children and teenagers will only be referred for an autism assessment if they meet one of six criteria, including breakdown of their education placement, risk of family breakdown and having very low levels of communication linked to autism.

A spokesperson for Sirona said autism referrals were expected to fall due to the changes, but that “any child who was referred prior to 1 March will be assessed under the previous criteria”.

“We believe that the changes to the referral criteria are naive and irresponsible. We believe that it puts children at genuine risk,” said Breitnauer. She is a member of local campaign group Assess for Autism, which is crowdfunding a possible legal challenge to the new rules.

“The risk of death by suicide is actually greater for autistics without intellectual disability. These are the autistic people most likely to mask, mostly likely to seem fine. This is the group of children who would not make it on to Sirona’s priority list because they have developed coping mechanisms that hide the urgent need for diagnosis and support.”

A statement from Sirona said: “We changed our referral criteria so our resources can be directed towards the children that have the highest clinical need or are the most vulnerable. It is important that we do not continue to accept more children and young people than we can see and assess, and our new approach has also brought us more in line with services across the rest of the country.”

So basically unless parents can afford private insurance diagnostic criteria over there has gone back to roughly what it was prior to the introduction of Aspergers Syndrome back in the 90s. Having grown up when diagnostic criteria was much stricter, it will be sink or swim for “low support needs” autistic children. It will toughen some kids up and destroy others. It is not the 60s so parents won’t be operating completely clueless but unlike the 60s bullying can be 24/7 and there is much more sensory stimulation now.

Adults are not part of this discussion at all but I imagine if an adult is not already in a group home or sectioned there won’t be any diagnosis available sans private insurance.


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26 Mar 2023, 6:31 pm

Is this only in Bristol?



ASPartOfMe
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26 Mar 2023, 10:17 pm

Jono wrote:
Is this only in Bristol?

Bristol, North Somerset and South Gloucestershire.

I am sure in many other areas while maybe not as bad they have this problem.


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14 Apr 2023, 9:28 am

Legal challenge launched over autism assessment changes in Bristol

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Campaigners have started legal action to reverse a decision to reduce the number of children eligible for an autism diagnosis via NHS services.

Sirona, which runs the service in Bristol, North Somerset and South Gloucestershire, said it had to narrow criteria due to a 350% rise in demand.

Assess for Autism has raised £5,000 through a crowd funding campaign to challenge the change.
Sirona said it recognised concerns but said its decision was "clinically-led".

Jai Breitnauer, one of the founders of the campaign, has one son with a diagnosis of autism and a second waiting to be assessed.

She said Assess for Autism's campaign had received an "outpouring of support" and had hit its fundraising target in 10 days.

Ms Breitnauer said the campaign was considering launching a judicial review if Sirona does not engage.
"We have sympathy for NHS services locally and nationally which we know are underfunded" she said.
"However, we take great issue with that idea that this is a clinically-led decision. The decision doesn't seem to follow NHS guidelines.

Assess for Autism said it wanted to know if there were other cost-savings Sirona could have made before it decided to scale back services.

Ms Breitnauer said it had been difficult to secure an assessment for her younger son.

He doesn't meet any of Sirona's criteria but that doesn't mean he isn't struggling.

"He is finding school hard, he's finding social interaction hard - his anxiety is sky high and he doesn't really understand why he feels the way he does," she said.

"We have said to him the likelihood is that he is autistic. But until we have a diagnosis it is hard to know what services we can access," added Ms Breitnauer.

Sirona said it was undertaking a system-wide review of its services and feedback would be considered.


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“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


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29 Apr 2023, 8:04 am

Decision reversed to restrict autism assessments in Bristol

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A plan has been reversed to restrict the number of children eligible for an autism diagnosis via NHS services.
Sirona, which runs services in Bristol, North Somerset and South Gloucestershire, said it had to narrow criteria due to a 350% rise in demand.

Parents and carers opposed it and threatened to take legal action.

The regional integrated care board scrapped the plan earlier and said it was committed to learning from young people and their families.

Children are currently routinely waiting up to two years for an assessment.

Sirona argued that even without a diagnosis, children with autistic traits who did not meet the assessment criteria could have their needs met in schools and other settings.

'Really relieved'
But campaign group Assess for Autism argued that by focusing only on the most severe cases, more children, whose needs could other wise have been managed effectively, would reach crisis point.

It raised £5,000 through crowdfunding to bring a legal challenge against Sirona.

Following the announcement earlier of the reversal, Jai Breitnauer, one of the founders of Assess for Autism, told BBC West: "We are really relieved, we didn't want to go through the judicial review process.

"It's a time consuming process and it's an emotionally laborious process."

The group sent a "letter before action" or first step of legal proceedings to try to overturn the decision, to both the provider and Bristol, North Somerset and South Gloucestershire Integrated Care Board (ICB).

The ICB manages the NHS budget and the provision of health services in the region.

Sirona and the ICB said in a joint statement earlier the changes to assessment criteria had been scrapped following feedback from parents, carers and local councillors.

"We have always been committed to learning from young people and their families, and revising our approach if necessary, and we are sorry for any additional anxiety caused by the changes."

’Sustainable approach'
The statement said the decision had also been reversed following the publication of NHS England's National Framework for Autism Assessment Services.

In addition, a further £1m in funding has been allocated to the region to ease the waiting list for autism assessments, the two organisations said.

It is understood the threat of legal action also played a role in their decision making.

"Considering these developments and the feedback received, we have agreed with our partners that we will revert to the previous assessment criteria, while continuing to triage all referrals based on clinical need and vulnerability as we have always done," the statement said.


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“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


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29 Apr 2023, 8:43 am

^ That's good they've reversed it.

Funnily enough, my first referral was to Bristol. I was on the list for 4 years, I think? Then I got very, verrrrry lucky and someone re-reviewed my case and I got referred to a different place who processed it all within a couple of months.



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02 May 2023, 10:44 am

That's wonderful, backward England for you. It seems that people in the UK have to be in a crisis before they get any accommodations that they need for any ailment.


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