Have you seen BBC Documentary Harvey & Me yet? I have just finished watching it and want to say a massive thank you to Harvey and Katie for sharing their lives so openly.
There are so many issues when it comes to raising disabled children. As a parent of two young disabled children myself I really appreciate them highlighting the challenges and sharing them so publicly.
Here are my thoughts on some of the issues raised in the show.
I am scared for my children’s future
I am years away from adult transition for my kids but it terrifies me. Every parent worries about their children’s futures but when your child has additional needs that fear is a bigger weight to carry.
There are not enough choices when it comes to specialist schools and those choices are even fewer once you get to specialist collages. Once your child turns 18 they are deemed an adult in the eyes of the law and supporting them can become extremely difficult with all sorts of paperwork barriers.
Harvey showed us just how challenging change can be for autistic people. There are many children in residential schools like Harvey because the transition from home to school is so challenging. The change of moving to a new hospital and college will have a huge impact. My eldest took a whole year to settle at school when he started.
It did make me laugh watching Katie try to show Harvey the social story on the way to National Star College. It felt very familiar as a parent doing everything you can to help prepare your child for a challenging day yet with a standard response from your child to leave them alone.
For me the biggest challenge to families with an autistic child is navigating and battling the system to get their child’s needs met. The battles start really early with so many struggling to simply get a diagnosis. Most will take somewhere between 12- 18 months to get a diagnosis but there are lots who take many years to get a diagnosis or support.
Please keep in mind no official autism support from local authorities (such as parent training/ setting support) is given prior to a diagnosis. However once you get a diagnosis you quickly realise there is not enough support or services available.
In June 2019 more than 8,000 young people with special educational needs had no access to education. The NEU teaching union found that 8,587 children and young people with education, health and care (EHC) plans were classed as “awaiting provision” for a school place. Why because there are not enough specialist schools or placements and there is not enough funding to adequately support children in mainstream placements.
The lack of access to children’s mental health services is causing significant impact on families. Many are unable to access preventative support and have to wait for the child to be in crisis.
I could go on but I’m sure you get my point – access to support is limited.
Assessment & Treatment Units and Mental Health Units
In the show Katie talks to Anna Kennedy about the fact that she wouldn’t let Harvey get sectioned because she is so involved. This is something many of us think but so did the parents who then found themselves battling to have access to their own children.
The point in Harvey and Me that broke me was when Katie was talking to Isabel Garnett who she had seen on This Morning talking about her son when he was placed in an ATU.
The heart-breaking thing is there are so many families whose children have been taken away and locked up in these units that are not fit for purpose. Everything I know about autism tells me that these units are wrong in every way. Why would we lock up and drug vulnerable people especially children.
For more on this check out this piece in the Guardian: Locked away: the national scandal you may have missed
The Right Support – ‘It’s not rocket science’
There is a very simple and cheaper solution, providing extra support at home, in schools and in the community. No child should be treated like a prisoner, let alone get worse treatment than them. When families desperately need help they are scared to ask for it because they know there is a real risk their loved ones will be taken away from them and put in facilities that are not equipped to meet their needs and will have extremely damaging results. It is not good enough and it needs to change now.
Every SEN parent will have been nodding along as Isabel said ‘it’s not rocket science’ it is simply about putting the money in the right place.
10 Years after the Autism Act was implemented the All Party Parliamentary Group on Autism (APPGA) and the National Autistic Society looked at its impact. They found that there is simply not enough care, support and understanding in our society for autistic people.
In 2015, NHS England committed to reduce the numbers of autistic people and those with a learning disability in mental health hospitals under their Transforming Care program. However, despite some progress in overall numbers, NHS figures for the number of autistic people in mental health hospitals – especially those without an accompanying learning disability – have actually gone up in this time, not down.
What need to be done?
- Increase specialist placements
- Diagnosis can be faster
- Less paperwork for families
- More individualised support
- More personal support in the home
- Increase of SEND and CAMHS practitioners
- One Consistent SEND process that all LAs must follow
- Better training for teachers / health visitors / GP. The biggest challenge for all SEND families is a lack of understanding from others including professionals.
Wherever possible, autistic people should get the mental health support they need in their own community. If someone falls into crisis and is admitted to hospital, it is essential that this is delivered by staff that understand autism. In an environment that meet their needs and for as short a time as possible.
Harvey & Me
Harvey & Me showed a beautiful relationship between Harvey and his Mum and I really enjoyed watching a documentary that was relatable for me as a parent to a disabled child. Harvey is certainly a wonderful young man who its hard not to fall in love with. A while back I visited the National Star College for FestAble which was a wonderful event for disabled families. I really hope that Harvey can get a placement there although I know it will be a stressful year for Katie getting this sorted.
If you haven’t watched it yet get over to BBC iPlayer I really recommend it. I hope that enough people see the show and learn a bit more about the reality of challenges faced by disabled families in the UK. I hope even more that people with the power to make positive change watch and see the importance of making that change happen now.
Have you seen Harvey & Me? What did you think? Let me know in the comments.