Posted on by bereavedandbeingasingleparent · 39 Comments

The elephant in the room

There is a lot of political and media focus on certain carefully framed questions at present in the UK…

  • Why are so many parents keeping their children from attending classroom education?
  • Why are there so many autistic children now compared to in the past?
  • Why are schools having to divert so many resources away from core teaching and into special needs support?
  • Why is there such rising demand for Child and Young Person Mental Health Services?
  • Why are so many young people unable to work and pay taxes?
  • Why are we spending so much on disability and carer benefit support? Why is it so easy to claim……

I will say it again, these are CAREFULLY FRAMED. All designed to support a narrative about the pressure this puts on businesses and hard working taxpayers. It’s like the framed questions and narrative which is being pushed about how immigration is causing unemployment, the lack of affordable housing, the breakdown in communities and public services. As a result many in our society now find themselves very much labelled as problems, a burden on others….

I find myself increasingly feeling at odds with the direction of travel the country is heading in. I guess I’m not the only one increasingly feeling like our voices are being drowned out.

Deep sigh….

In all this, in all the political, press, tv and social media coverage I’m not hearing three issues ever being discussed. I guess because they don’t fit in with the CAREFULLY FRAMED NARRATIVE. The large elephants in the room.

Just how difficult, stressful the process is, just how many hoops you have to jump through to try and claim any sort of financial help, disability and carer support. And when you get that support it is at best mo more than the bare minimum, it is NOT a life of luxury.

Child and Young Persons Mental Health Services are stretched to breaking point. It’s a service that has been cut back and underfunded for years. Huge delays in accessing services, services spread way too thin. Again it’s also a nightmare trying to get a young person registered for these stretched services. In our case it took two and half years. A process designed to discourage use. Far too many miss out on the help and support they badly need.

In the UK, as soon as a young person hits 18 they are signed off the support service. There is no equivalent adult service. With Hawklad his Care Lead wanted to hand him onto another service to continue the support after he reached the age threshold, but there was no service to hand him on to. So he was signed off. Support ended. To the number crunchers and spreadsheet decision makers, he is now classed as FIXED as he has been signed off from support. How many young people, how many families suddenly find themselves with no support, no help, no one to turn to. How many don’t even get the support when they were younger. The question shouldn’t be why are so many young people unable to work, why are so many listed as …… it should be why are we LETTING so many young people and adults DOWN.

Posted on by bereavedandbeingasingleparent · 49 Comments

18

That’s a proper sign post, although I’m not sure how feasible it is to walk to Canada or The US from this part of the world.

Most of the support had already started to be pulled from Hawklad when he approached his teen years, that’s how it goes in the UK. Now at 17 the inevitable letter arrived. At 18 he will be signed off from the last service still providing support to him and his care will be handed over to Adult mental health care. In other words, the day he hits 18 any support he may need will need to come in the form of self help, or from family, friends, internet, leaflets and a few overstretched voluntary groups. NOT from health professionals.

As a Paediatrician cautioned me when Hawklad first started receiving support

Some support and help could be required for life. The level of support required may diminish over time, sometimes no support is required but often the level of support can grow as people try to forge their own adult life. But when someone reaches 18, we stop asking as a society, in fact we stop providing the support almost completely. Child Mental Health will inevitably hand over virtually every child under its care to an adult service that doesn’t exist in the UK. After that if someone picks up the courage to go to see a doctor, in most cases that doctor will have little real understanding of areas such as autism and will probably just want to put a plaster over any problems in the form of Anti Depressants.

As adulthood fast approaches for Hawklad, I keep increasingly focusing on the immediate future, the next stages. Trying to develop that independence yet worrying about where he can turn to if he ever needs support. It’s a sobering thought sometimes.

Posted on by bereavedandbeingasingleparent · 57 Comments

The future

The National Autistic Society has carried out research on the reality of adults living with autism spectrum disorders. It’s a sobering read.

I just want to highlight some specific lines in the report.

49% of adults with autism or Asperger syndrome are still living at home with their parents. 65% of these adults have had no community care assess- ments and are therefore unlikely to be known to the statutory agencies who should be supporting them.

31% of adults at the lower end of the autism spectrum are still being cared for at home, despite their high level needs. 45% of parents believed their son or daughter required 24-hour care, and only 15% thought they could live in sheltered or shared accommodation.

Only 3% of adults at the higher end of the autism spectrum are living fully independently, and a further 8% are living independently with some regular professional or family support.

As the report points out Families are picking up the care responsibilities in the UK associated with autism. Repeated Government’s have buried their heads in the sand. The current government unbelievably has probably set the bar even lower.

Like many families around the UK (and worldwide) my thoughts are increasingly focusing on the future. What will happen to Hawklad as an adult in our society which is so badly setup for those on the spectrum. Let’s just say that its currently not an entirely reassuring feeling I have. Yes I’m worried.