Private Diagnosis recognised?

[CWP]

My son has only recently started assessments for Aspergers. He was at his second appointment yesterday with a Speech and language therapist. He is 5 years old and they assessed his relative age for language comprehension to rule out any developmental delays. His age came out at 9 so we agreed there are obviously no issues there. The therapist has now said that she will be recommending that a Paediatrician goes out to school and to home and that they make a referral to Autistic Diagnostic Services as his problems point towards him being on the Spectrum. She then said that children in a transition from nursery to school or primary school to secondary are given priority and that he may not even have his referral accepted if they are 'too busy' although she feels his case is quite strong and will push for it. If his referral is accepted it could be up to a year before the whole process is complete. He was treated as naughty at nursery and I feel badly let down. I eventually had to remove him. He is nearly at the end of Primary one and the thought of a whole year longer without support for him or us is a bit much. He is teased at school and I find him becoming increasingly stressed. He badly needs social skills training and to be honest we badly need support.

 

I wonder if anyone knows how to go about getting a private diagnosis and whether the local authority will be bound by this to provide support. I should mention that we live in Scotland. We also have an issue that we live on a border of two health boards and that appears to be a problem as to who should see him. It would be either Lanarkshire or Glasgow.

[chris54]

To give you a short answer, you need to find a suitably qualified Person in private practice and and take it from there.

 

Does a LA have to recognize a private diagnosis? once again yes is the short answer, but you need to remember that the support the child needs is not only determined by having a diagnosis. It is possible that a child who has no identifiable condition may need more help and support than a child diagnosed with a specific condition.

 

Even when you have a diagnosis, his school will need to show that he is not making satisfactory progress under school action and school action plus before a statutory assessment is applied for, this in its self takes up to 6 month and there is no short cuts round that. It is the proses set down by parliament.

 

A diagnosis is not a requirement to get a statutory assessment.

Edited March 20, 2009 by chris54

[cmuir]

Hi

 

I live in Scotland (Edinburgh).

 

I found that my son did not get support prior to getting a diagnosis. Although this shouldn't be the case, support was much more forthcoming afterwards. The diagnostic process did take a while for us - took a long time before our GP/HV would agree to refer us and even when they did, we were passed from pillar to post for a year and a half before getting a diagnosis.

 

I considered the private route because I felt like we were being passed from pillar to post and getting no answers. I found it incredibly frustrating that no one seemed to want to provide a label, despite acknowledging that R had AS. I was told on a number of occasions that a private diagnosis would not be recognised by eg education department and so didn't pursue that as an option. The one thing that struck me at the time was that although I found it incredibly difficult not knowing if/when we'd get proper answers (waiting!), diagnosing a child was obviously no easy task. The whole process can be lengthy because a number of individuals are often involved - School staff/Paeds, OT's, EP's, SALT's, Consultants, etc. Unless it's a clear cut case, I guess no one takes it lightly labelling a child. Although the waiting was incredibly difficult for me, I could appreciate why .

 

I constantly pushed for cancellation appointments and we did get things moving a bit faster. Although it is true to say that a child with obvious special needs should receive support, sadly, it all boils down to budgets. Generally, the kids with behavioural problems get prioritised (because they can be disruptive) although this is not openly acknowledged. I also found that 'pester power'/perseverence helped to get appointments. When R started nursery and then moved onto primary school, an educational psychologist was assigned (a different one in each case) automatically by the nursery manager/headteacher. I've heard of instances whereby parents have had to push to get an EP assigned. It's the EP job to assess and help identify areas of difficulty and then seek external professionals support eg by an occupational therapist or speec and language therapist, etc. These individuals can help contribute towards a diagnosis.

 

Best wishes.

 

Caroline.

Edited March 20, 2009 by cmuir

[CWP]

Thanks for your replies.

I have calmed down somewhat since my last post. My son has been dragged through so many NHS waiting rooms that i worry about the effect on him psychologically. He has been assessed for Dyspraxia, Muscular Dystropy, Arthiritis among others. When his school mentioned AS and I started reading up on it I finally felt like -this fits. When we got the appointment I thought this was the start of helping him so when I was told it couldbe another year my heart fell out my shoes. Like any parent I want the best for him and I often feel like for a five year old he has way to hard a life already. Like I said I've calmed down a bit and am more prepared to take things slowly - they've been slow since he was two.

 

Thanks again for your replies and advice it really is much appreciated. Unless you've 'been there' you can't really understand and its nice to be understood.

x

[Sally44]

I would recommend you contact the National Autistic Society. They will be able to give you relevant information for your area.

I don't see how a private diagnosis could not be recognised. They have to recognise private reports, and these are always the best tools to use at Educational Tribunals. Just because you go private doesn't mean the professional is going to make things up! So check the facts with the NAS. In my situation I found that LEA and NHS professionals, and inclusion officers were lying to me about many things. And they continued right up until the Tribunal hearing, when they caved in and agreed to everything. I had private reports that proved what he needed in school and they agreed to the placement I requested as I had proven through the reports that that school was the only one that could meet his needs in our area.

The National Autistic Society has an Educational service and a Tribunal service to help parents in your situation.

A Statement is a legal document. The Tribunal always go on Case Law and not what the local council have decided is their in house policy. The Statement process has a Code of Practice which clearly states what a Statement could contain and how it should be worded.

Regarding a diagnosis. Unfortunately a diagnosis does get you quicker access to things eventhough many professionals will tell you otherwise. But, again, any child with a Statement, which is a legal document, will have their needs (as itemised in the statement) met before any other child without a Statement or without a diagnosis. So, your child will get a second rate service without a diagnosis and Statement. Terrible, but true.

Prior to the Statement I could never get any professional interested in assessing my son, or giving their advice, or attending IEPs etc. I was refused access to just about everything. So I started gathering evidence (written letters asking for assessments, letters confirming discussions teachers had had with me about my son, asking school why the Ed Psych had not seen my son for over 2 years, letters asking the SALT department to explain to me why in three years they still had not assessed my sons behaviour or social interaction difficulties, letter to my MP about waiting times, etc etc.

In year 2 I requested that my son was moved to an Enhanced Resource school. A place had been promised to me if we felt that my son was not making progress. Then the Ed Psych told me that there were no longer any places available. The thought of having my son in that school for another year would have sent me mental. So I got the details of a solicitor that deals with special needs law through the NAS website, got private reports and went to Tribunal. I cost me my new kitchen. But he is now in the right school, and my life is no longer completely centred on trying to get someone to do what they are supposed to do with my son. He gets a higher level of support than any other child in his school and he is not the most severe. He is mainstream (Enhanced Resource), not in an autism unit.

So speak with the NAS. Also speak with your child's paediatrician to see if there is a quicker way of getting a diagnosis. It might be quicker through health because they have waiting list targets. Education can take for ever.

[CWP]

Thanks Sally that was a very informative reply. its much appreciated. There will be a visit out to the school tomorrow to observe him so i will see where that takes us. Hoepfully things will move on but at least I know a little bit more now on how to handle this. I feel a little out of control of things just now until I gain a better understanding of the processes.

 

[Karen A]

Hi CWP.I may be wrong and am sure others will help if I am.

However I am not sure Statements of SEN appply in Scotland.I think educational law may be slightly different.Statements may only apply in England and Wales.

There is a separate portal on the NAS site which applies to Scotland I will find it.I have learned from experience having previously helped somome from Northern Ireland. Karen.

Edited March 31, 2009 by Karen A

[Karen A]

http://www.autism.org.uk/nas/jsp/polopoly....764&a=12416

This is one of the NAS sheets re additional support needs.I think the equivalent of SEN in England.

[Karen A]

http://www.autism.org.uk/nas/jsp/polopoly....764&a=12411

This is the information re the ''Coordinated support plan'' which I think is the equivalent of a statement of SEN.The NAS advocacy for Education [scotland] details are on the page.They will be able to offer expert advice.

http://www.nas.org.uk/nas/jsp/polopoly.jsp...764&a=11344

This page includes the NAS general avocacy for Education for Scotland tips.

Edited March 31, 2009 by Karen A

[Karen A]

After all that I remembered that thanks to another Forum member doing some great work everything you need is available here.

http://www.asd-forum.org.uk/forum/index.php?showtopic=20379

[Sally44]

I would contact the NAS to find out exactly what applies in your area. That will help you know how best to spend any money on private reports (if you take that route) eg. you can pay a private Ed Psychologist for a diagnosis, or for a report that you can use as evidence that he needs a Statement or you could pay a solicitor to get involved and use law to force the school/LEA/NHS to do what they are supposed to do.

The NAS do have alot of services and advisors that can help you throughout the process, even to the SENDIST Tribunal.

It is always worth double checking everything you are told, as in my case I found most of it was untrue.

You do definately need to be aiming towards getting your child a Statement because that is a legal document that the school and LEA has to fulfill.

Prior to a diagnosis I was told my son would not get access to anything, which I later found out to be untrue. So start from now to always put everything in writing, and always request a written response back.

After about a year into the process (for me), I found out that the Autism Outreach Teacher who goes into mainstream school to advice them had over 200 children on her books. She works alone. So she could only give around 1 days input per child per school. That was one of the final straws that made me realise I had to go for a Statement. So always ask how many children the AAT is supporting. Does the SALT have training in ASDs, if not write to their department and request one that does. I also found out that the Ed Psych has a 'quota' of pupils she will see in school per term. So if your child is the kind that withdraws into himself/herself and doesn't have behavioural issues, the chances are that the school will not call in the Ed Psych (even if they are failing and they are losing skills), because they have other pupils with greater needs (from the school's behavourial point of view). Don't be afraid to push, write and complain.

The process is usually School Action, School Action Plus (when school call in outside agencies), then it goes to a request for a Statutory Assesment towards a Statement. Remember that you always need written evidence of what your childs needs are and how those needs should be met. That might come from school, or you can gather some information yourself. I took my son to private Play Therapy sessions for over a year so that they could write me a report on my son's ability to interact and play. I also took him to Dyslexia Action and they couldn't assess him, which was evidence in itself. I found it impossible to get anyone from the LEA or NHS to actually be specific in their recommendations - which I can only put down to them trying to control their budgets. An independent professional will assess your child and will honestly identify their needs and how they should be met, and they are not employed by the LEA or NHS and therefore aren't accountable to them, only to their own professional code of practice.

And if you have private reports it means that LEA/NHS staff have to either agree, or prove that that report is incorrect. The LEA SALT completely agreed with everything in the private SALT's report (all 52 pages of it!), as they are professionals too and LEA/NHS professionals involved with my son were telling me that they 'wanted' to help but that their hands were tied. One professional told me she had been warmed 'to remember who her employer was'. But she did send a letter to me stating what her professional opinion was, as the LEA contradicted the findings of their own professionals and were denying my son a place in a school that could meet his needs and were trying to force me to keep him in a mainstream school that were failing him.

[Karen A]

I would contact the NAS to find out exactly what applies in your area. That will help you know how best to spend any money on private reports (if you take that route) eg. you can pay a private Ed Psychologist for a diagnosis, or for a report that you can use as evidence that he needs a Statement or you could pay a solicitor to get involved and use law to force the school/LEA/NHS to do what they are supposed to do.

The NAS do have alot of services and advisors that can help you throughout the process, even to the SENDIST Tribunal.

It is always worth double checking everything you are told, as in my case I found most of it was untrue.

You do definately need to be aiming towards getting your child a Statement because that is a legal document that the school and LEA has to fulfill.

Prior to a diagnosis I was told my son would not get access to anything, which I later found out to be untrue. So start from now to always put everything in writing, and always request a written response back.

After about a year into the process (for me), I found out that the Autism Outreach Teacher who goes into mainstream school to advice them had over 200 children on her books. She works alone. So she could only give around 1 days input per child per school. That was one of the final straws that made me realise I had to go for a Statement. So always ask how many children the AAT is supporting. Does the SALT have training in ASDs, if not write to their department and request one that does. I also found out that the Ed Psych has a 'quota' of pupils she will see in school per term. So if your child is the kind that withdraws into himself/herself and doesn't have behavioural issues, the chances are that the school will not call in the Ed Psych (even if they are failing and they are losing skills), because they have other pupils with greater needs (from the school's behavourial point of view). Don't be afraid to push, write and complain.

The process is usually School Action, School Action Plus (when school call in outside agencies), then it goes to a request for a Statutory Assesment towards a Statement. Remember that you always need written evidence of what your childs needs are and how those needs should be met. That might come from school, or you can gather some information yourself. I took my son to private Play Therapy sessions for over a year so that they could write me a report on my son's ability to interact and play. I also took him to Dyslexia Action and they couldn't assess him, which was evidence in itself. I found it impossible to get anyone from the LEA or NHS to actually be specific in their recommendations - which I can only put down to them trying to control their budgets. An independent professional will assess your child and will honestly identify their needs and how they should be met, and they are not employed by the LEA or NHS and therefore aren't accountable to them, only to their own professional code of practice.

And if you have private reports it means that LEA/NHS staff have to either agree, or prove that that report is incorrect. The LEA SALT completely agreed with everything in the private SALT's report (all 52 pages of it!), as they are professionals too and LEA/NHS professionals involved with my son were telling me that they 'wanted' to help but that their hands were tied. One professional told me she had been warmed 'to remember who her employer was'. But she did send a letter to me stating what her professional opinion was, as the LEA contradicted the findings of their own professionals and were denying my son a place in a school that could meet his needs and were trying to force me to keep him in a mainstream school that were failing him.

 

Sallya.I don't think CWP can work towards getting a Statement because they do not have them in Scotland as far as I can gather.The law is different there.Karen.