Creating Autistic Suffering: Is there a role for social care in the lives of disabled children?
This article was co-authored by David Gray-Hammond and Tanya Adkin
The NHS defines the role of social care as being;
“…about providing physical, emotional and social support to help people live their lives.”
This sounds like a wonderful, albeit vague, concept. Perhaps it would help to look more closely at the law associated with social care. Let’s go back to 1970 and look at the Chronically Sick and disabled Persons Act. For the purpose of simplicity, let’s take a snapshot of what they are supposed to provide for disabled children according to this legislation:
“(a)the provision of practical assistance for the child in the child’s home;
(b)the provision of wireless, television, library or similar recreational facilities for the child, or assistance to the child in obtaining them;
(c)the provision for the child of lectures, games, outings or other recreational facilities outside the home or assistance to the child in taking advantage of available educational facilities;
(d)the provision for the child of facilities for, or assistance in, travelling to and from home for the purpose of participating in any services provided under arrangements made by the authority under Part 3 of the Children Act 1989 or, with the approval of the authority, in any services, provided otherwise than under arrangements under that Part, which are similar to services which could be provided under such arrangements;
(e)the provision of assistance for the child in arranging for the carrying out of any works of adaptation in the child’s home or the provision of any additional facilities designed to secure greater safety, comfort or convenience for the child;
(f)facilitating the taking of holidays by the child, whether at holiday homes or otherwise and whether provided under arrangements made by the authority or otherwise;
(g)the provision of meals for the child whether at home or elsewhere;
(h)the provision of a telephone for the child, or of special equipment necessary for the child to use one, or assistance to the child in obtaining any of those things.”
Unlike the NHS definition of social care, this is a fairly broad and specific piece of legislation that lays out exactly what local authorities are legally required to provide to disabled children. If we look at section 17 of The Children’s Act (1989), the provision of services that can be provided by social care is pretty much unlimited at the discretion of the director of Children’s Services. As long as it meets one of the areas identified in the Common Assessment Framework. The Children’s Act (1989) defines a “Child in Need” as;
“(a)he is unlikely to achieve or maintain, or to have the opportunity of achieving or maintaining, a reasonable standard of health or development without the provision for him of services by a local authority under this Part;
(b)his health or development is likely to be significantly impaired, or further impaired, without the provision for him of such services; or
(c)he is disabled,”
This essentially means that if health and development is going to be “impaired” or “further impaired” without provision, there is nothing that can not be covered by social care. It is essentially open ended because of the individualistic needs of disabled people and their families. At a glance this sounds wonderful. No disabled child should ever be at a disadvantage. Unfortunately, those that have tried to access these services have had a vastly different experience.
Why is there such a gap between law and practice?
We challenge any parent of a disabled child to ring up the local authority and ask for any of the services outlined above. These resources don’t exist. All that does exist for parents of disabled children is bureaucracy, complaints, gaslighting, invalidation of difficulties, and as the cherry on top; parent-blame. The truth is that one of the roles of a social worker is about the distribution of services and providing the things that the law outlines. When those resources have been stripped away, and there is nothing for social care to give, what is left?
The lens of safeguarding
The policy and ethics of social work is changing. The Working Together to Safeguard Children (HM Government, 2018) document does not even specify anything for disabled children. It’s as though their existence has ended because of the systematic defunding of services, and no one seems to have noticed. Clements & Aiello (2021) argues that this is unlawful and discriminatory; We would agree that completely ignoring the existence of disabled children in a social care capacity fundamentally alters the purpose of social care, without explicit statement of it’s new purpose. Here’s how this plays out;
Parents approach social care to ask for an assessment regarding the provision that the law specifies social care should provide.
Social care automatically apply a lens of safeguarding to said child.
There are no resources to give.
The only function that remains for social care is to focus on the parenting of said child.
Institutionalised Parent/Carer Blame
Parents complain about unlawful restrictions and practice, and get labelled as difficult parents, or serial complainers.
Fabricated and Induced Illness, accusations of exaggerating your child’s difficulties for personal gain, caught up in safeguarding processes due to the absence of due process for disability, or if you dodge all this; you may be able to slink away with no resources, no provision from social care, but still with your family intact.
Truth be told, without the resources we are at the point that if we look at this objectively, we have to ask; what is the role for social care with regards to disabled children?
Ethics in social care
Social care values and ethics (as outlined in the code of ethics document (2021) produced by The British Association for Social Workers) covers three main values;
“1. Human Rights
2. Social Justice
3. Professional Integrity”
None of the above meets any of these values. Not by a mile. Social workers are being set up to fail. They are set up to be the scapegoats for the effects of the governments practice of defunding essential services for disabled children. The short-sightedness of this is immense because the provision of these services for disabled children are explicitly recognised as vital to the health and development of disabled children. If the health and development of disabled children is significantly impaired, it will create a safeguarding issue. Defunding services for disabled children creates more cost-strain on safeguarding services, who are not specialists in disability, and feeds into the culture of defensive-practice, gatekeeping of resources, and parent-blame.
Tanya is routinely approached by parent’s as she works in the field of social care. These parents want advice after reading the legislation about accessing provision. The heart-breaking truth is that she has to tell them there is no provision that exists without it being legally enforced. Parents of disabled children are faced with an ugly truth that there is no adequate support for their child from social care.
What do we do instead?
This is where we have to examine;
What the law says.
Is it enforceable?
What is the cost both financially and mentally?
Do the pros outweigh the cons?
Realistically, in our experience the most effective way to assess, identify, and obtain provision for disabled children is through an Education, Health, and Care Plan (EHCP). That in itself can be an intense and lengthy legal process. We can say one of the benefits is the Special Educational Needs and Disability Tribunal’s (SENDisT) role in the appeals process regarding EHCP’s. They are an external tribunal service that look at the legalities regarding the needs and provision for disabled children. These tribunals are overwhelmed meaning that the EHCP process (with appeals) can take upwards of 18 months. You may need independent reports, legal representation, and an abundance of cognitive resources. While you are waiting for all this to happen you are stuck in the parent-blame cycle that we mentioned above.
The only way that any of this is going to change for the better is for an increase in public money investment into a sector that is, quite frankly, running on empty.
One of the positives is that around 96% of EHCP tribunal appeals end in favour of the parents;
“SENDIST panels upheld local authority decisions in just 207 of 5,600 hearings in 2021-22 – an LA success rate of 3.7%” – Keer (2022)
At first glance this looks like a positive for parents, but it is evidence that local authorities are using the overwhelmed and lengthy tribunal appeal system to defend resources that don’t exist, and avoid their statutory requirement for the provision of services.
As is always the case, disabled people are at the bottom of the pile yet again. Viewed as a drain on societies resources, directly contributing to ableist and discriminatory attitudes that are a pervasive theme throughout disabled peoples lives. Therefore creating more Autistic suffering.
If you would like to play a part in trying to improve one small part of this, click here.
References
Clements, L., & Aiello, A. L. (2021). Institutionalising parent carer blame. The Experiences of Families with Disabled Children in Their Interactions with English Local Authority Children’s Services Departments. Cerebra. University of Leeds.
HM Government (1989) Children’s Act
HM Government (1970) Chronically Sick and Disabled Persons Act
Keer, M (2022) SEND Tribunal 2022: With a 3.7% LA success rate, what will it take for the Government to finally understand the law matters? Special Needs Jungle
Policy, Ethics, and Human Rights Committee (2021) The Code of Ethics for Social Work. British Association for Social Workers
