Jodene Antoniou: 5 things dangerously wrong with the UK government’s provision for Deaf children

‘It is well recognized that hearing is critical to speech and language development, communication and learning.’ American Speech Hearing Association, “Effects of Hearing Loss on Development”.

Pretty understandable, right? Pretty sensible? Pretty darned obvious? At least you would think so…

Well, apparently not to the UK government.

In just another example of being ‘not deaf enough,’ it seems children in our area suffering only from mild or moderate hearing loss are not eligible for speech therapy funding on the basis of hearing impairment. In our case, SLT services advise that the second our son’s ‘profound’ speech delay improves to the level of ‘severe’, funding will be pulled!

So following on from the almost completely useless school meeting between my son’s teacher, school SENCO, teacher of the deaf and speech therapist, I left wondering a few things. But rather than getting into a gigantic rant (like that which the wonderful lady on the NDCS helpline listened to this morning), I thought I’d consider the wider situation nationally.

I’m taking this opportunity to voice some of the things that I (and many other parents of deaf children) find highly troubling, indeed, borderline disgusting, in the way the UK support services and the government approach the needs of children with hearing loss.

So here’s my list of five things which are disgustingly wrong with the way the UK government approaches support for deaf children…

1. Using a Positive Attitude as a Tool to Avoiding Support

In theory, positivity is a good thing, but in practice it’s often abused by the system and can leave parents frustrated. Most of the information presented about the link between children’s hearing loss and speech therapy follows along the lines of, ‘If hearing loss is diagnosed and treated early, deaf children can develop speech and language skills on a par with their peers.’

Whilst there are undoubtedly parents of children with hearing loss who have had such a positive experience, hearing is central to speech development and this is not the case for many children. In addition, attributing speech delay to speed of diagnosis can all too often serve as an aid to shifting guilt onto parents. Such comments also infuriatingly centre around the idea that ‘hearing aids restore normal levels of hearing’ which is simply not true!

Speech in children with hearing loss should be proactively monitored and therapy should be offered as standard if there is any delay. The suggestion that early diagnosis can prevent speech delay is all too often used by support workers to claim that speech impairment is unrelated to hearing loss and therefore, justify the fact that deaf children are not prioritised in SLT provision.

2. Lack of Standardisation Between Regions 

The NDCS states in its Hands up for Help Report that ‘The help a deaf child gets is determined by where they live, and not what they need.’ The lack of standardisation is not only a problem in terms of leaving many deaf children in certain areas without the provision they need, but it also makes it near on impossible for parents to research and find out about their child’s entitlements.

Council websites are notoriously hard to navigate, and pathways to information are often blocked with endless requests for paperwork, evidence, and official documents. Parents of deaf children get lost in trying to find out even the simplest information and guidance on what their children are entitled to.

Let’s be honest, the structure and processes involved in getting support for deaf children are blatantly nothing more than a shameful money saving tactic. At the end of the day, the government gets to avoid paying out for anything, whilst covering their own backsides by shifting the blame onto parents for being too ‘lazy’ to fill out the endless streams of paperwork.

3. Preaching the Equality Act; Whilst Ignoring its Principles

The education system in the UK is totally flawed in terms of offering services to deaf children in line with the Equality Act 2010.

Part of Schedule 10 on Accessibility for Disabled Students states, ‘Improving the delivery to disabled pupils of information which is readily accessible to pupils who are not disabled.’ Yet, schools in the UK do not offer extra support as standard for hearing impaired children. Funding for children with hearing loss is often denied on the basis that deafness in itself is not a learning disability, but rather a medical one which is ‘solved’ through the use of a hearing aid.

Regardless of the nature of a disability, arrangements should be put in place to ensure we have accessibility to the information. Sadly, in schools, even the provision of sound field technology and radio aids is a matter which is dictated by the opinions of schools and teachers of the deaf on how they perceive a child to be coping (and how much paperwork they wish to avoid) rather than the fact that there is an undeniable need for these technologies.

The intention of the Equality Act is to support disabled children to achieve their full potential. Conveniently for our government services, deafness is an invisible disability and deaf children often appear to be coping far better than they actually are. A child may seem to follow instruction by effectively copying other children in class after the fact, but that does not mean that the information has been heard and absorbed. Authorities appear to take advantage of children’s coping mechanisms as a way of justifying their lack of support.

4. Procrastinating and Not Planning Ahead

Overwhelmingly, the most likely response a parent of a deaf child will get when asking for support, no matter how vital it is, will be ‘Let’s see how it goes…’ Education moves fast and waiting a whole term to sit back and observe a child struggling before offering even the possibility of support should be deemed as negligence.

Let’s look at it this way. If a parent was to wait over two months before even considering addressing a serious concern for their child, they would likely be reported to social services. However, this is something that our government does to our children every single day.

Delaying the provision of care and leaving a child to struggle can ultimately impact on other aspects of life, possibly leading to anxiety, lack of confidence and social isolation. These things get added onto statistics for deaf children as if they are just par for the course.

5. Playing the Support Funding Game like it’s Pass the Parcel 

Any parent of a disabled child should understand this straight away. However, it’s hard to explain with hard facts and regulations; mostly because those regulations don’t really exist and are published nowhere.

Support services tend jump from the council, to schools, to the NHS, back and forth like yo-yos, and the whole process of one service handing over another wastes months and even years of both our time and our children’s.

To bring up the Equality Act again, what tends to happen is care is only given according to who’s paying for it rather than whether or not it’s needed. The worst-case scenario is often in independent schools. For state schools, when funding shifts, the government effectively still foots the bill in some way, shape or form. However, in independent schools, no such funding will be available. The government passes the buck, and treats the school in a way that is ‘unequal’ and that lack of equality is ultimately passed onto the child.

The funding structures for educational and developmental support for deaf children are so fickle and complicated, many parents don’t have a clue what they are eligible for or where to start. Parents unable navigate this ridiculous labyrinth are ultimately blamed when their children don’t get the support they need.

… … …

This week, my son has faced every one of these hurdles. Professional support services have said it all. ‘He wears hearing aids and so has access to sound…’ Support workers (who mostly aim to reduce workloads and save a few bucks) have justified their decisions through the claim that moderate hearing loss is not considered a prevalent factor speech delay. However, unsurprisingly, in our case, we have been provided with no other evidence, formal explanation or informal suggestion of any other potential causes…

Councils notoriously put up enormous hurdles in complaining about care and support, and complicate the complaints process in order to silence parents. In addition to this, many parents of deaf children (me included) are anxious about making complaints, worrying that making a complaint to local services may indirectly lead to their children being treated even worse.

So, what should we do? Should we each put forward a formal complaint that sits on an administrator’s desk for three months, before they leave their thankless job, move onto another and the whole thing is forgotten?

For me, I’m going to have to, but if you believe that speech and language services should be offered to ALL children with hearing loss, please share this blog and help make the UK aware.

Jodene says: “My son, Brandon, was born with hearing loss in 2012. I started working in transcription and subtitling online in around 2009 but didn’t really link my work to Brandon’s hearing loss until recently. As he’s starting to get older, I know he is likely to use subtitles a lot as he grows up and learns to read. He doesn’t do a lot of signing at the moment, but we are trying to teach him what we can.”

“In 2013, our son had his hearing aids fitted and the NHS retainer for them was quite ugly, so I made him a personalised one. Then I started selling those through Ebay and eventually decided to create an online shop (MyLittleEars.com) for products for children’s hearing loss. We have two other sellers on the store (one is temporarily unavailable as we’re updating new products).”

“At the beginning of 2017, using what my husband and I had learned about creating a website through My Little Ears and my long experience in subtitling, we decided to start out on our own with subtitle services.”