A system that turns parents into ‘warriors’ fighting for their children's rights

Published by Professional Social Work magazine, 23 July, 2021

A naturally positive person, there’s a certain weariness in Rosie's response to this week's government announcement of a “landmark strategy to improve the lives of autistic people”.

“There seem to be a lot of strategies and reviews,” she says. “That is the thing with the government in this area – it’s ‘let’s have a review’.”

Rosie is the mother of 14-year-old Anila who is on the severe end of the autistic spectrum. She is, by now, used to fighting the system.

Nine years ago, her and her family left London for leafy Surrey – not because they wanted to but in a bid to ensure better provision of services for Anila.

“She was in a special school in London, but it didn’t have enough staff for who she is and as she grew bigger that was clearly going to become an issue,” says Rosie.

“I was looking nationwide as to which areas provided services for social contact for people with disabilities, that were able to give families a break. Surrey did, along with Kent and Oxfordshire.

“I was literally looking at the map – that comes down to a postcode lottery.”

More than a decade ago the Lamb Inquiry was highly critical of provision for young people with special educational needs and disabilites. It spoke of a system that “creates ‘warrior parents’ at odds with the school feeling they have to fight for what should be their children’s by right; conflict in place of trust”. It called for a “radical overhaul”.

New legislation in the form of  The Children and Families Act 2014 and a SEND code of practice followed. However, an Ofsted report this summer - SEND: old issues, new issues, next steps – found that  systemic failings persist, including a lack of joined up work between agencies, co-production with parents and accountability.

Asked if they felt they were getting the support and services needed to improve their child’s outcomes, parents in ten localities overwhelmingly answered ‘no’.

The report added: “The last ten years has done very little to ease the need for ‘warrior parents’. Parents still feel that they have to ‘fight for the rights’ of their children. Indeed, in many cases parents felt that they were rarely taken seriously.”

Another report by charity Cerebra out this week finds national and local social care policies create a “default position for those assessing disabled children that assumes parental blame.”

It is, then, little surprise that Rosie’s family is not inspired by the government’s latest pledge to tackle “inequalities and barriers autistic people face.”

The accompanying £75 million funding to “speed up diagnosis and improve support and care for autistic people” equally fails to impress.

“To put that in perspective,” says Zahid, Rosie’s husband, “The government just announced it’s spending £55 million to help the French stop migrants crossing the Channel. In 2020 it was estimated only 8,400 crossed the Channel.

“The government is spending £75 million on autism which affects 700,000 people in the UK. It’s about where the government want their headlines and priorities.”

Even after moving to Surrey, the couple had to fight their new local authority to get funding for Anila to attend a private special school near where they live.

“It was seven minutes from our home but more expensive than the other option and they didn’t want to pay it. The school they wanted Anila to go to would have taken one hour and 15 minutes to get to in rush hour.”

The couple took the local authority to a tribunal – and won. Rosie is aware they were lucky compared to other families in getting a resolution before hitting crisis.

“Most people have to go into crisis. Their child isn’t coping in their school, the school can’t keep them anymore, the parents have the child at home with them and it then goes to tribunal.”

As a speech therapist, she also has more knowledge on how to navigate the system than most. She fears for those without such insight.

“This fight is replicated across the land at considerable cost. The local authority gets its speech and language therapists and occupational therapists to go and do assessments on these kids.

“They generally support what the local education authority are saying. Parents challenging this have to pay for private professionals which is very expensive.

“It is not uncommon to hear of parents going through £40,000 in savings paying for legal fees to get these cases up and running. We were supported by the charity SOS! SEN but still had to find £6,000.

“There are many people who just fall out of the loop because they can’t afford it. Then you end up with those children being more likely to go into a residential placement, away from their families in worst case scenarios, and that is really expensive.

“Supporting people well in their communities is a much cheaper option than paying out huge sums of money for round the clock care in a residential centre.”

Politicians have pledged to improve community provision since the exposure of abuse of inpatients with learning disabilities at Winterbourne View hospital by BBC’s Panorama in 2011.

However, earlier this month a committee of MPs said it was a “national shame” that around 2,000 people with autism and learning disabilities are still in long-term institutional care. An average stay of six years was described as “shocking” by the Commons Health and Social Care Committee. It repeated calls for community-based care.

But Rosie says this will only work if backed by a skilled and decently paid workforce, something she has found to be in short supply.

“The bottom line is there needs to be proper training. People with autism require properly trained people that have a yearly wage, not an hourly rate, which reflects that skill. And then everything else can fall into place around that.

“If you do that, with things like human rights, dignity and respect, you can actually follow through these values and uphold them and not just pretend and try to get there but fail.”

A lack of such skilled workers in the community, says Rosie, means even families with more emotional and financial resources to call on can still be in danger of their children prematurely entering residential care.

“That has happened in the past because they can’t get the support in the community they need.

“Since Anila turned seven I have had to employ 20 personal assistants. Everyone struggles to find good PAs that fit their child’s needs. Money from local authorities as direct payments start at £10.50 an hour – very little for the level of skill needed.

“It’s a relentless, repetitive cycle finding PAs. A good PA means that not only can the individual with needs access the wider world, but a family can function well. Without that extra help their emotional wellbeing can quickly deteriorate.”

Austerity cuts over the last decade haven’t helped, adding to an adversarial environment that pitches parents against cash-strapped local authorities.

The number of special educational needs appeals by parents rose from 3,557 in England between September 2011 and August 2012 to 7,917 for the same period between 2019 and 2020.

The proportion of appeals won at tribunal rose from 564 (equal to 15 per cent) a decade ago to 3,577 (equal to 45 per cent) between 2019 and 2020.

A study by think tank IPPR North in 2019 found the amount of funding available for special educational needs and disabilities had reduced in England since 2015 while the number of SEND pupils has risen.

Rosie has felt the pinch of cuts. “A few years ago you could get autism respite accommodation for your child here. Now it is only there if they are not sleeping through the night. That is due to cuts.”

As Anila transitions into adulthood, Rosie is all too aware she is likely to face new battles to ensure her daughter gets the appropriate care and support she needs and deserves.

“As a parent you have to get your roadmap sorted out. But the system seems to rely on people not being prepared because then resources can be shoved in a particular direction.

“With autistic people it is really complicated finding accommodation that will work for them. When I started looking at homes for Anila's future, they are all in town centres and are quite small places.

“I have to do a lot more research into how that will work and how she will be as a young adult, which is odd because you should be able to dream for people when they are younger. Regardless of whether they are disabled, people should have prospects ahead of them.

“But for this population the prospects don’t seem obviously there.”

Asked to sum up what it has been like accessing services for Anila over the past 14 years, Rosie says: “I like to be positive, but I would say it has been quite appalling really. That is the truth of the matter.

“Because it requires there to be someone like me in the family. There are lots of people like me in families who will keep going and keep having repeated conversations with people because that is what parents will do for their children and yet still not getting the money they should be getting. Not getting a decent hourly rate for your PA, or waiting years to get that sorted, waiting years to get an overnight placement once a month so your child can learn to live away from home and know what that feels like, so we as parents can let our child go and learn to trust that situation and have time for ourselves.”

Given its values, Rosie says there is a key role for social workers in supporting families like hers.

“Some social workers do a fantastic job,” she says. “It is such a difficult job they are doing and there are people who have children with learning disabilities that train to be social workers because they want to help get it right for families like them with the limited resources there are.

“But some social workers get the balance wrong and tip a little bit too far on the side of the authority they are working for.”

For BASW resources on working with autistic people click here