Disabled children and their families are one of the most severely disadvantaged groups in the UK.
A major research report published today (21 July 2021) finds that most English Children’s Services Authorities operate a ‘one size-fits-all’ approach to families – regardless of whether it is a parent carer seeking support for a disabled child or a family where the evidence suggests there to be neglect or abuse. The effect of this approach is to create an institutional culture of ‘parent blame’.
The research cites many comments made by parent carers: parents who felt the process to be humiliating’; ‘bullying; ‘devastating’; who likened it to ‘the police turning up at your door and [saying] we’ve got a warrant to search your house’.
In relation to the findings of the report, the Rt. Hon. Sir Edward Davey MP Patron of the Disability Law Service stated:
“I am very concerned to hear of the continued problems with the way many Children’s Services Departments in England are treating parents caring for disabled children: a problem that was highlighted in a Disability Law Service report last year. The current report points to defective Department for Education guidance as a root cause of this problem, which is 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”.
The Report’s ‘Key Messages’
- National and local social care policies in England create a default position for those assessing disabled children, that assumes parental failings. This approach locates the problems associated with a child’s impairment in the family.
- The national guidance that directs the process by which disabled children are assessed by English Children’s Services Departments (‘Working Together 2018’) is not fit for purpose and arguably unlawful. Its focus is on safeguarding children from parental neglect / abuse and it fails to address the distinct assessment and support needs of disabled children for whom there is no evidence of neglect or abuse.
- Unlike the national guidance concerning the assessment of disabled adults, ‘Working Together 2018’ contains no requirement that those assessing the needs of disabled children have any disability related expertise, skills or experience.
Of the 143 local authority assessment protocols identified:
- None contained a clear explanation that a different approach should be taken concerning the assessment of the needs of disabled children where the referral was not accompanied by evidence of neglect or abuse.
- 80 per cent required the assessor to confirm if the ‘child’s bedroom has been seen’ regardless of whether there was any evidence to suspect that the child was being neglected or abused.
- 87 per cent referred to the need of seeing (or communicating with) the children alone regardless of whether there was any evidence to suspect that the child was being neglected or abused.
- None gave guidance to assessors concerning the need for cogent grounds to exist before seeking to see a child’s bedroom or seeking to interview a child in the absence of their parent.
- Policies of this nature interfere with the fundamental rights of families to respect for their private and family lives, and their home – and are discriminatory in that they treat disabled people and their families in the same way as people whose circumstances are materially different.
86 per cent of the parent carer-led support groups who responded to the research survey considered the assessment process to be extremely unsatisfactory and intrusive – highlighting:
- Assessors’ lack of training, experience and understanding concerning the disability related challenges that disabled children and their families encountered.
- The intimidating nature of the assessment process: a process that focussed on parental ‘fitness’ rather than addressing the additional support needs that resulted from their child’s impairment.
- The intrusive nature of the process, with families reporting that assessment visits could take place with little (or no) notice and that they were often placed in impossible positions – for example, feeling that they had no real choice about whether the assessor inspected their child’s bedroom and interviewed their children in their absence.
The research report calls on the Department for Education to publish – as a matter of urgency – separate statutory guidance to address the specific needs of disabled children and their families.
The report can be downloaded here.
Notes:
- The report is based on research undertaken by the Cerebra Legal Entitlements and Problem-solving (LEaP) Project based at the School of Law, Leeds University.
- The research involved the analysis of the assessment protocols of 143 English children’s services authorities and a survey of 92 English parent carer-led support organisations.
- With an increase in allegations of FII (Fabricated or Induced Illness) against parent/carers by professionals, we are pleased to see the recent publication by the British Association for Social Work and Social Workers of Practice Guidance’ – by Cathleen Long, Dr Judy Eaton, Sally Russell OBE, Dr Fiona Gullon-Scott and Professor Andy Bilson: Fabricated or Induced Illness and Perplexing Presentations: Abbreviated Practice Guide for Social Work Practitioners (BASW 2022).
- Cerebra is a national charity helping children with brain conditions and their families to discover a better life together.
That’s exactly what I thought, intimidating me, even trying to gaslight me. I now face our worker wanting to talk to my child alone. Your report is spot on which may affect many more families. Professionals need to start listening to us and act upon their findings in a lawful way.
I have been through a Sen tribunal what a horrible, toxic time it became, every professional from the NHS to the local authority who are paid to support my ASD son showed their nasty little colours all policies they SHOULD follow were blatantly ignored and the tribunal allowed this, I opted for a health and social care assesment for my son 3 pages of the report were about him – 5 pages were about my inability to parent my son correctly and all of his ASD traits were my fault-I declined anymore involvement with this person and her department and am still upset about it today I felt so demoralised as a parent and still cry about it now
My son is 21 and was diagnosed nearly 3 years ago with schizophrenia and only because I insisted, autism. His team after hospital do exactly the same to me and I am made to take blame ,for their either purposeful or not errors. The way that parent carers are treated seems like we’re in the way and stopping what they call progress, they disregard what good parents have actually done.
This has definitely affected some of the parents I see.
My god how true I feel pressured bullied into let the local authority putting my daughters and family be put in uncomfortable position not respecting my disabled children rights or worker always looking at their bedrooms ! I have lost all trust and faith in them all!!!!! And it seems there’s very rights we have as parents to say hey stop! And listen to what we are saying about our kids!
Definitely agree. The most recent accusation I have faced when asked for more support is that I should be using the child DLA funds for accessing support. Where else am I using their DLA funds? I have 3 children with special needs and only get 4 hour support! Each time I ask for support they say it’s enough. It’s a constant battle which stresses us out, like a did we don’t have enough in our plate! The children’s disability service in my area is a joke!
I am going through exactly this at the moment. I’m a single parent to twins one needs full time 1:1 support because of a brain injury . I can’t physically give my child who has a physical disability the one to one he needs full time and I’ve been threatened with child protection twice because I reported situations when my child wasn’t safe because I needed to go to the toilet or prepare food or I needed to shower or shop or do anything except the nice things in life that we can never access.
But I will not allow this to continue so have challenged the LA and I hope we get to go to judicial review to highlight this. Thank you for showing me that it isn’t just me and the parent blaming us systemic in this world we call special needs and disabilities.
This is a really important report that mirrors one of the findings of the Joint Chief Social Workers report into Social Work with young autistic people
https://www.gov.uk/government/publications/social-work-and-autistic-young-people-an-exploratory-study/a-spectrum-of-opportunity-an-exploratory-study-of-social-work-practice-with-autistic-young-adults-and-their-families
which found that practice is too often focused on identifying parenting defecits rather than the support parents need
I couldn’t agree more. I’ve been through a gruelling experience even trying to apply for Short Breaks fund. The application even admits how traumatic it is going to be. I get puny amount of time when my son who is disabled is at school provision – during which time I’m trying to deal with OT,SALT, CAMHS…..I’m single parent and no support at home. As others have mentioned I can only dream of ever having nice things of life – relationships, friends a hobby….Even to simply get funds to afford support worker for my son so that I can take him to playground – yes requires two adults to do that – yet Short Breaks rejected application and told me my son’s challenges don’t amount to any more than those of any 7 year old. This is gut wrenching and unjust.
I haven’t had this experience in Wales. We have had nothing but support and understanding. However I don’t know what is spoken about us behind the scenes. However we have always had to ask for rather than being just offered up services but I am guessing funding is limited. I am so sad to hear this is happening as this would just add to the overall stress of having a disabled family.
I had this for year’s, to the point we were put on a child protection plan for neglect. In the end there wasn’t enough evidence for them to continue as the children even had an advocate who told them their side. We don’t have social service involvement anymore, instead the primary school has pushed ahead for assessment and an EHCP for my eldest son. And assessment for my younger son, we have received appointments for.
I felt like if the children were playing with lego, painting, colouring etc, anything that made a mess, if I had clean washing waiting to be folded or dirty waiting to be washed even that I was a bad parent.
Nothing was ever good enough, I was even told that I should split up with my husband at one point.
It is wrong how we are treated.
When I asked SS for help with a son who has ADHD, ODD and Autism, they did an assessment and just put him on the at risk registrar. Despite me being a nursery manager for 20 years, having separate special needs qualifications and being a qualified youth leader, they insisted it was a parenting problem, ignoring all the diagnosis my son has. I was advised to leave my husband and told I needed to attend parenting classes ?
similar here
likewise!
Reading this with tears. I’m a single full time working mum of three mum disabled. I’ve met with nothing but lies and systamatical avoidance of my children’s fundamental rights in order to avoid providing support. I work on both sides and understand the budget constraints but there is without question a default position of parental blame and a process that is impossible to navigate…many give up. The whole system is dysfunctional and needs a complete over hall to make it family centred. No family expects an ever ending pot of money but they need understanding and encouragement not derision and blame.
English children’s services need abolished.
They aren’t interested in supporting or helping.
They destroyed my life & my children’s lives
I’m a disabled adult with a broken back, to get their way They lied and claimed it was a stomach bug despite having the surgical reports. They hurt my oldest son then gave him to a dangerous individual when I was in hospital.
When pregnant with my youngest son, they hounded me even though I no longer lived in England.
Scottish social services helped me during England’s harshest bullying though sadly my son suffered a brain bleed during my pregnancy.
Now he’s thriving in Scotland with good support because Scottish social services actually did support & help.
English social services, need abolished & held accountable for breaking law after law after law.
I’m more qualified than the majority of the social workers in cumbria, but they seem to have a hatrid for intelligent people with disabilities.
this echos my experiences
I retired from Cerebra a few years ago and well remember these issues, which then we assisted families with, as we could, on an individual basis and published information. Congratulations on this research and report, which goes a much-needed step further and may it result in change for the better in the system.
I’ve been bullied by children’s services and SEN for almost 3 years, put on 2 child protections all due to my daughter contracting the Flu and was mentally & physically never the same, as she refused to go back to her school, the school then made up lies about me and the LA placed my daughter on a child protection, after 11 months of bring on this, they did absolutely nothing to help us, 5 months in they admitted there were no safeguarding issues, yet decided to keep me on a child protection for a further 6 months so she didn’t get lost in the system, 6 months later they still did nothing, I then went to a CIN and still nothing progressed, I was then put back on a Child protection due to there continuous failing, always easy to blame the parent and turn it all round on them, both child protections consisted of no evidence but hearsay and all from LA staff. Almost 3 years on, my daughter is in the same position but now I’m in care proceedings! They don’t want to take my child just need direction from the court how to move forward. I’ve been bullied for almost 3 years, I’ve been called names, told I sabbatage things, I’ve got mental health and question my capacity to care for my daughter, but then fail to do a parenting assessment, I’ve never been treated so poorly in my entire life, every move I make and every word I say its enter the microscope, they make up continous lies about me to get there conviction, they have ever questioned CAMHS and Maudsley Hospital consultants calling them beist! It’s called me to have mental health, knowone should be alone to experience such bullying and have to deal with this constantly, if I was being bullied by anyone else, they would face consequences, but not the LA they have to much power and make decisions on a child’s life based on what?????
Agree that England Social services should be scrapped, they are doing more harm than good. We have been lied to, lied about, speculative comments in reports including the social worker guessing that our daughter’s disability may be due to ‘early life negative experiences’, despite the fact I have sent her published papers from the BMJ on the condition she suspects has been caused by us. And our neurologist, epilepsy nurse and psychiatrist don’t suspect this at all. What gives a medically unqualified person the right to speculate on what has caused our child’s health problems, it is simply gossip and is bullying spreading false rumours. The social worker has traumatised us, as parents of disabled children we blame ourselves enough. Our healthcare workers are lovely and constantly tell us this is not our fault, but it’s too easy to be floored when you are at your most vulnerable when someone comes into your home and tells you it is your fault. What is happening is a major scandal and the media should be picking this up.
Damn I’ve worked in health care, education and have a son with disabilities. I’ve had one horrendous head teacher accuse me of abusing my son and fabricating, causing his disabilities. They made inappropriate comments stating I was overmedicated for my condition. ( At the time I was working as an Audiology Technician at West herts nhs Trust. I went to work with what I though was a dull head and back pain by lunch rushed round to A&E, after clinic, as I wet myself and couldn’t walk. Diagnosed with cauda equina and EDS, and took me 6 months to walk aided. ) I can’t come off my meds if i do , im losing muscle tone &mobility, they are keeping me out of the wheelchair and mobilising with a stick, and in work. Even with a BA in Applied SEND and 12 years in education and 7 years in health care, SS and the educational professionals gas light you. They’ve called my sons professor in metabolic medicine ( GOSH) a liar, his professor in rheumatology ( GOSH and L&D hospital) a liar and misdiagnosing him. They refused to allow his CAMHS consultant, rheumatology, orthopaedic and cardiology consultants to attend his EHCP and reviews , or even provide basic input. We are blessed to have amazing support from the medical teams. But SS and educations model of disability is victorian, nothing short of them standing outside my home screaming “you’re a witch and god has cursed you with a disabled child”
It’s been like this for decades but more prominent under current government xx
Five and a half years on, things are no better, I see.
https://whobyf1re.wordpress.com/2017/08/06/love-and-affection-and-dirty-words/
This was the most horrifying experience. When my daughter fell poorly she was 7, we had no idea what the next 5 years would hold. I was accused of Fii/MSbP when she was 9 yrs old and emotional harm when she was 11 yrs old placing her and her older sister on Child Protection in year 6 and 11 while they were doing important exams. I’d worked with children from leaving college and after these accusations I was terrified to go back to work. I was left with PTSD and no support. My daughters are 18 and 23 now. I still attend meetings at colleges for my 18 yr old because her attendance is low, which will affect her grade to get into Uni.
It took us 6 years to get a diagnosis of hypermobility Ehlers Danlos Syndrome and PoTS for both girls and 8 years for MCAS diagnosis. It’s so unfair parents are blamed when they don’t know what is wrong with their children due to an invisible illness as it’s classed as. Being blamed for their fatigue and low attendance was just horrible. Like I was a monster harming my children when all along it was Drs who were harming them by not believing us. It’s so intimidating and intrusive having social workers in your house and taking them out for a hot chocolate. I wouldn’t wish this experience on anyone. It wasn’t until I lost both my parents suddenly to brain aneurysms/stroke that we were believed and had to go private through desperation. I’ve met the most incredible people on my journey and what warriors it makes us. But this doesn’t make it right or any better. It’s simply just all wrong, the whole system is flawed.
I was shocked when I found this article and read all this comments and experiences in this article.
We have the same problem, we have a son who is diagnosed with ASD and mental health. When he was at primary school, school struggled with him and us as we can’t understand him, so they advice us to refer him to lime tree for a diagnosis but we’ve waited for a while before we got his diagnosis of ASD ,when he started secondary school. since then all the problems occurred at secondary where they decided they can’t meet his needs, so he didn’t get to school for while , we managed to get him to another school but again they said they can’t meet his needs so he was expelled because they said he’s so high risk to himself and to others, we tried to get him support from social care when he had the diagnosis of ASD, all in all we have 6 social worker handle us and 6 Local Authorities whose trying to get his educational packages but none has been successful, to cut it short from when my son is 10 years old trying to get support with school and social care , we are still constantly battling, my son is 16 years old now but still we struggle too much, social care just blaming us constantly, putting us down as a parent, trying to break our family apart, instead of supporting my son, they just constantly putting the blame on us why our family is in crisis. They even branded us a neglectful, abuser parent. They even put the boys in child in need and then child protection because there’s some incidents we can’t control, my son cant be control if he’s anxiety is so high and it’s difficult to control. We’ve been begging them for support since we are under social care. We try to get him to a residential setting but apparently that’s not gonna happen because of resources, more than 50 residential has been consulted and they said no. We gone to Sen tribunal which we are waiting for them to investigate the matter, I’ve gone to citizen advice for help, and now waiting for my complaint to be assessed by the head of social care then ombudsman.
My question is ???? Why this is happening in this country where they should support every family who’s in crisis and have problem instead they are tearing you apart. They are trying to destroy your family apart. This is not suppose to be. I lost my trust and confidence into the system.
I hope one day someone or somebody from the government will step up and overhaul the system. Before every family in this country who’s got problems with their special kids will torn apart or be destroy.
There are so many others who I see have had very similar experiences of the blame game. Parents/carers having gone through a living nightmare, I was sad to revisit this experience, saddened too, as I had always thought that it was perhaps my fault, or the fact I was/can speak up for myself, and my son who has disabilities (they couldn’t handle). Anyway, why some professionals made up stories, and took their job title as a licence to lie, make assumptions, tried to make me feel guilty, gaslighting and basically behaving in a cold-hearted, deceitful way. I encountered what I wish to put behind me, as it’s too painful to revisit.
I hope that the current system is reformed, as what I’ve just read clearly shows that the system should assist us with the difficulties of caring, help/support us. Instead of this vindictiveness.