Help 16yr son

Don't worry you're not being foolish.

The diagnosis for your son is the first of many small steps on the long road to get you and your son what you need.

So much of what you have described of your son also fitted/still fits in to my life and many others on here would agree too.

You are not alone on this journey.

Let's, for argument sake, presume you are getting your son's diagnosis from the NHS and he is at least 18 years old. You also live in England.

Then once he is diagnosed as according to the Autism Act 2009 (Yes, there are laws on Autism) Statutory Guidance (some-what legally binding guidance which give these laws some meat) states that your son should recieve a Community Care Assessment by social services from your local council.

A Community Care Assessment is basically an assessment for people who are disabled.

Unfortunately social services law is old and is really going from 1948 (just after the war and the birth of the NHS) to today.

The 1948 definition of disability (this ONLY applies for social services purpose) is a person aged 18 and "who suffer from mental disorder of any description". Because this definition of mental disorder is so brief, it includes things like Autism, mental ill health/mental health problems, learning disabilities and Parkinsons etc.  

So now as your son is disabled (for social services purposes) he can have the assessment.

But wait there's more.....

You have the assessment but for him to actually get any services his needs have to be in the bands that your council have said it will meet.

There are four bands:

1. Low

2. Moderate

3. Substantial   [bit like HIGH]

4. Critical   [bit like VERY HIGH]

Most councils are only meeting needs which come into the last two bands of Substantial and Critical, so your son's needs would need to be assessed as being at these bands.

You can find the four bands descriptions here [http://www.scie.org.uk/publications/guides/guide33/introduction/whatis.asp] and you would normally find the bands your council has set to on their website or asking them by email.

Don't get scared by the wording of the FACS [the bands] criteria as for example for Critical, one of the points is

"Significant health problems have developed or will develop".

This should include mental health and as many people with Autism have associated mental health conditions and even when they don't, they are more prone to anxiety due to their autism.

Also significant could be interpreted as being not minor nor trivial, so it is how you and more importantly how you inform social services that, in this case, your son has health problems which are significant.

I hope some of that made sense.

You may want to have a Carer's Assessment for yourself but do bear in mind that whereas with the Community Care Assessment, you son will have a legal right to services and/or direct payments [you get paid money instead of social services arranging his care, so you should in theory have more choice]

if his needs meet the bands set by your local council, the council do not strictly speaking have to provide carers with support. So you could end up with a shiny and glossy assessment but no support for yourself.

I am not trying to put you off and the Carer's Assessment can be theraputic to have done, as you get a chance to talk about how your caring role is affecting you but it may not practically end up with you getting any support for yourself.

I should also point out that I am not a legal expert and I am just pointing out stuff that I have used as I'm going through this process too. You may wish to seek your own independent advice.

Also remember that just because laws and Government guidance say X does not mean social services will not try to squeal their way out of doing it.

I do hope you and someone else find any of the above useful.

Hope to hear from you soon.

urspecial.

Don't worry you're not being foolish.

The diagnosis for your son is the first of many small steps on the long road to get you and your son what you need.

So much of what you have described of your son also fitted/still fits in to my life and many others on here would agree too.

You are not alone on this journey.

Let's, for argument sake, presume you are getting your son's diagnosis from the NHS and he is at least 18 years old. You also live in England.

Then once he is diagnosed as according to the Autism Act 2009 (Yes, there are laws on Autism) Statutory Guidance (some-what legally binding guidance which give these laws some meat) states that your son should recieve a Community Care Assessment by social services from your local council.

A Community Care Assessment is basically an assessment for people who are disabled.

Unfortunately social services law is old and is really going from 1948 (just after the war and the birth of the NHS) to today.

The 1948 definition of disability (this ONLY applies for social services purpose) is a person aged 18 and "who suffer from mental disorder of any description". Because this definition of mental disorder is so brief, it includes things like Autism, mental ill health/mental health problems, learning disabilities and Parkinsons etc.  

So now as your son is disabled (for social services purposes) he can have the assessment.

But wait there's more.....

You have the assessment but for him to actually get any services his needs have to be in the bands that your council have said it will meet.

There are four bands:

1. Low

2. Moderate

3. Substantial   [bit like HIGH]

4. Critical   [bit like VERY HIGH]

Most councils are only meeting needs which come into the last two bands of Substantial and Critical, so your son's needs would need to be assessed as being at these bands.

You can find the four bands descriptions here [http://www.scie.org.uk/publications/guides/guide33/introduction/whatis.asp] and you would normally find the bands your council has set to on their website or asking them by email.

Don't get scared by the wording of the FACS [the bands] criteria as for example for Critical, one of the points is

"Significant health problems have developed or will develop".

This should include mental health and as many people with Autism have associated mental health conditions and even when they don't, they are more prone to anxiety due to their autism.

Also significant could be interpreted as being not minor nor trivial, so it is how you and more importantly how you inform social services that, in this case, your son has health problems which are significant.

I hope some of that made sense.

You may want to have a Carer's Assessment for yourself but do bear in mind that whereas with the Community Care Assessment, you son will have a legal right to services and/or direct payments [you get paid money instead of social services arranging his care, so you should in theory have more choice]

if his needs meet the bands set by your local council, the council do not strictly speaking have to provide carers with support. So you could end up with a shiny and glossy assessment but no support for yourself.

I am not trying to put you off and the Carer's Assessment can be theraputic to have done, as you get a chance to talk about how your caring role is affecting you but it may not practically end up with you getting any support for yourself.

I should also point out that I am not a legal expert and I am just pointing out stuff that I have used as I'm going through this process too. You may wish to seek your own independent advice.

Also remember that just because laws and Government guidance say X does not mean social services will not try to squeal their way out of doing it.

I do hope you and someone else find any of the above useful.

Hope to hear from you soon.

urspecial.