Social Services Support - I use the word "support" lightly!

openheart said:

 quote "What excuses has your local SS given you to deny you support?"

Local SS !

The social service like all government agencies services depends on your luck and the council area. My first introduction to social services was a nightmare, I felt that I have to be some sort of scumball smashing windows or a history of violence too any get assistance. They looked at me as if I had horns, what his problem, seems okay to me.

One year of try to get assistance, it was not until a psychologist wrote to them, so maybe that is the answer,, no one can self refer, it needs one of the professional to back you up, so there is a record and an audit trail which they can not get away from. So unless you are deep in the system with surrounding issues,, social services will not respond to your request for assistance. Start smashing the banks windows and threatening to kill the local middle class populas(only joking, but you know what I mean).

So far my assistance from the Social services as been one off writing reports about me(social care assessment), before they can "contract me out" to another service.

I feel the SS, works on a remit of containment, so as long as your are feeding your child strawberries forever and no damage is getting done to the general populas, what is the problem ? Containment is out of sight, out of mind, there is no political or economical damage directly to the state. Shhhhhh come back in 10 years, Autism Act, I started a Joke !

Lol but soo true unfortunatly, especially when an adult.

IntenseWorld said:

 They fail children like Baby P and Daniel Pelka and yet come down like a ton of bricks on innocent families but by the same token families asking for help, don't get it.  Families are trying to avoid reaching crisis point, and social services are, according to the law, supposed to use preventative measures such as respite to ensure it too, but they don't.  No-one enforces the law in this regard, no-one polices it.  We just get the NAS running campaigns about it because it's all such a failure.  And yet the NAS fails adults with AS/HFA and when I rang their helpline before my younger daughter was diagnosed, in absolute desperation, they refused to help me because she didn't yet have her diagnosis.

Soo true, the first part and I love it () when they say lessons have/will be learnt. Errm no, if they had/are we wouldn't keep getting such tragedies with the same reasons coming up time and time again

Agree about the NAS issues, but as there are few other charities etc to take on the case, I kind of need to refer people on to them except when they're absolutly useless.

There's also the Equalities Act 2010. (formerly Disability Discrimination Act 1995) In the sense that your child / you're being treated unfairly due to your childs Autism. There's something about being able to justify it; but this doesn't seem to apply in your case.

I did hear of someone whose father was refused an assessment because he didn't need help. He was never assessed before they came to that conclusion.

 quote "What excuses has your local SS given you to deny you support?"

Local SS !

The social service like all government agencies services depends on your luck and the council area. My first introduction to social services was a nightmare, I felt that I have to be some sort of scumball smashing windows or a history of violence too any get assistance. They looked at me as if I had horns, what his problem, seems okay to me.

One year of try to get assistance, it was not until a psychologist wrote to them, so maybe that is the answer,, no one can self refer, it needs one of the professional to back you up, so there is a record and an audit trail which they can not get away from. So unless you are deep in the system with surrounding issues,, social services will not respond to your request for assistance. Start smashing the banks windows and threatening to kill the local middle class populas(only joking, but you know what I mean).

So far my assistance from the Social services as been one off writing reports about me(social care assessment), before they can "contract me out" to another service.

I feel the SS, works on a remit of containment, so as long as your are feeding your child strawberries forever and no damage is getting done to the general populas, what is the problem ? Containment is out of sight, out of mind, there is no political or economical damage directly to the state. Shhhhhh come back in 10 years, Autism Act, I started a Joke !

As you were mentioning Short Breaks, they have also produced a FAQs section, and as it is by lawyers, it should be correct.

http://www.councilfordisabledchildren.org.uk/media/80098/5_FAQ_Short_Break_Stat_Guidance.pdf 

In terms of budget cuts and support, they've also produced a report here:

http://www.councilfordisabledchildren.org.uk/media/80296/Cemented_to_the_floor_by_law.pdf 

Remember a lot of also covers adults like the 1970 Act I mentioned previously.

It may a lot to read but at leasts it's coming from professionals who should know what they're talking about.

In terms of practically implementing all this, is there a local parents forum/group wou could tap into or prehaps the local SEN partnership run by the council (I know they may not always be impartial but it's a good place to try).

I do not know if you're child has a Statment of Special Educational Needs, even if they're High Functioning / Asperger's Syndrome / Atypical Autism etc, you should try getting a Statement as it can help not only around school issues but others as well.

You can find more info on the charity, IPSEA's website: http://www.ipsea.org.uk

Take Care,

urspecial

Hi Mummysgirl,

The Council for Disabled Children, a national coalition charity, has produced a legal handbook for parents of disabled children but some also covers adults too. NAS is also a member of them.

See: http://www.councilfordisabledchildren.org.uk/resources/cdcs-resources/disabled-children-a-legal-handbook and I would definatly recommend reading chapter 2 "legal fundementals".

Lol, strawberries, but seriously I think the Children Act 1989 and Chronically Sick and Disabled Persons Act 1970 will become you're best friends. The handbook goes into much further detail on how you can try to get the support you need.

For adults, I know the Autism Act has been useless for most of us and I included. Though I am happy to see that super-meg is getting the help they need.

In terms of legal stuff for us (and kids), getting a social care assessment is the starting point but due IntenseWorld has mentioned the loops there are.

I will try to post later on how I'm trying to use these laws (boring, I know) on to get the support I need.

Take care,

urspecial

stranger said:

[quote]I have been told by adult services that they have no expertise in Asperger's even though they try to tailor therapy to "individual needs" (yeah, um not quite sure how those two go together) so I cannot get support based on my neurological difference.[/quote]

You may find (as some of us have) that you're too high functioning for learning disability support (IQ above 70) and mental health are no good for you because you don't actually have a mental illness.

My "support worker" was useless and clearly didn't understand the issues I have. I've tried getting back in touch with social services; but they don't want to know.

It wasn't therapy for Asperger's it was therapy for anxiety and PTSD.  Most of us do have co-morbid mental health issues, (in a study of children on the spectrum here http://www.ncbi.nlm.nih.gov/pubmed/20177765 it was 74%, during adulthood it most likely is higher due to trying to exist and fit in, in an NT society and how that makes us increasingly anxious and depressed over time).

The point is, mental health services (MHS) are meant to support people with AS/HFA, that means not only for their mental health issues but coping with their AS/HFA (such as coping skills and techniques or whatever).  That support is meant to be there according to NHS NICE Guidelines backed up by statutory guidance, as an autism care pathway.

How can MHS support even those rare Aspies/auties without anxiety etc. if they do not understand autism spectrum?  This was my point in what I posted before, I have a neurological difference, I have an obsessive thinking style, I have sensory difficulties etc. so any support they give me for me mental health alone must bear that in mind and be tailored accordingly as not all therapies will work on an autistic person, and it can't because they don't have expertise in ASCs.

I have been told by adult services that they have no expertise in Asperger's even though they try to tailor therapy to "individual needs" (yeah, um not quite sure how those two go together) so I cannot get support based on my neurological difference.

You may find (as some of us have) that you're too high functioning for learning disability support (IQ above 70) and mental health are no good for you because you don't actually have a mental illness.

My "support worker" was useless and clearly didn't understand the issues I have. I've tried getting back in touch with social services; but they don't want to know.

I have aspergers, age 22 I got my social worker last year shortly after my diagnosis last year. I can not complain about her at all she has been amazing and very understanding. Having had no previous experience of social services before I was a bit concerned because I'd only ever heard bad things on the news. 

For what it is worth I live in Cheshire East which I'm sure like other councils is facing cuts but its not there fault blame the goverment!

Hi - my son was born in the 1980's + got respite (about 2 sleepovers) once a month from when he was aged about 9.  Before that there was a "charitable" respite place but he used to get hyper there so he stopped going.  Respite's always been rationed because of the cost + whether or not your council has enough facilities to supply the demand.  It's probably far worse now because of the economic situation as financial restraints on councils tighten yr on yr.  They've probably upped their criteria, so that families who were eligible before no longer are now.  It's absolutely crazy + all about budgets.  I used to get upset that we didn't get more, but reading the posts on here I feel really upset for families + what they're going through.  The unfairness makes my blood boil.  We always had to fight for certain things, some parents more than others, depending on where they lived, + that was bad enough.  But now??  Criminal + heartless in my opinion.  My son has a vg package of care at present from social services, altho it took us a v long time to get there.  He has an annual review + each yr I prepare as well as I can with others who support him to try as hard as poss to retain that care pkg.  I think it'll get harder to do as the yrs go by.  My big fear is that some of his funding will be reduced + he'll suffer.  Then it'll be more fighting again.  Round + round we go.

I have been told by our social worker (who is based at the local child development centre and is therefore supposedly trained in special needs) that my children are basically not disabled enough for short breaks/respite.  Even though it says in legal guidance that autistic children are not to be disadvantaged in the eligibility of short breaks/respite.

I have been told by adult services that they have no expertise in Asperger's even though they try to tailor therapy to "individual needs" (yeah, um not quite sure how those two go together) so I cannot get support based on my neurological difference.

I applied for transport for my eldest child who is returning to school after a period of home-education, and she told me the social worker told her she didn't think she would get transport.  Clearly not disabled enough again.

I have just today been told that my eldest (who is pending diagnosis) is also not eligible for short breaks anyway - even though this same department told me recently that they support the child based on their needs whether they have a diagnosis or not.  The only reason she doesn't have a diagnosis is because CAMHS are so utterly rubbish and despite admitting she had autistic behaviours they did not diagnose her because they had no u-t-d school info (which as we all know often is not helpful anyway due to different behaviour between school and home) and one test they used (which was only researched on classic autistic cases and is not reliable in identifying high-functioning people) did not score her for ASC even though the other test and all her background does.

I have been on a waiting list for respite for many months despite being in absolute crisis and I am still fighting to get respite.  I was told we would get something in August and now, while I am dealing with my youngest's behavioural problems in school holidays, I am told it's September.  I told them I hit crisis often and would be lying if I said I hadn't considered bringing the children to a council office leaving them there and running away.  It didn't make a bit of difference.

The failures take my breath away.  All the consultations and statutory guidance are not worth the paper they are printed on as there is not one service that is fit for purpose when it comes to autism.

Social services, basically have it all the wrong way round.  They fail children like Baby P and Daniel Pelka and yet come down like a ton of bricks on innocent families but by the same token families asking for help, don't get it.  Families are trying to avoid reaching crisis point, and social services are, according to the law, supposed to use preventative measures such as respite to ensure it too, but they don't.  No-one enforces the law in this regard, no-one polices it.  We just get the NAS running campaigns about it because it's all such a failure.  And yet the NAS fails adults with AS/HFA and when I rang their helpline before my younger daughter was diagnosed, in absolute desperation, they refused to help me because she didn't yet have her diagnosis.

I don't know anyone (parent or adult with ASD) of a child with ASD who has managed to get support. A friend was told that because they're coping, they don't need help. Yet, her 2 children with ASD clearly have serious problems.

And if you're an high functioning adult, they don't want to know. My "support worker" was clueless.