Funding for FASD tests locally!

[gillandjim]

Dear All

I posted a question about this and have found out the answer at the following location:

FROM first4adoption.org.uk, funded by Dept of Education, independent of LA. On the website, under top tab - being an adoptive parent, then the tab on the left - support for adopters- adoption support fund –scroll down to “what support will I be able to get?” then you will find down the list under "specialist clinical assessment, eg FASD. "

Lets all report back how this goes. If an estimated 70% of children in care (presumably this includes adopted) have FASD related medical conditions, there will be lot of us parents and carers queuing up for this. The above website can report where a Local authority are non compliant, (presumably there will need to be trained FASD testers in place), but other difficulties will need to be lobbied for, and parents will need to get up a head of steam in large number to lobby if not satisfied, via for example Adoption UK.

Medical Committees have turned the requests for assessment down on the grounds that it adds nothing to their education or care. They don't have to live with the issue of uncertainty about a child that can't learn basic things, against the question of whether its a child that won't. We need to know how to help all of us with our struggling and disadvantaged children.

The parenting is different for autism and other medical conditions, and so as the knowledge gathers pace about the statistics and issues, we may get more appropriate help from our LA and in School.

Feeling more optimistic about getting a diagnosis in the near future.

[WildPoppies]

Brilliant post! Thank you! We were turned down by local health commissioning officer in our request for funding. I'm putting together evidence of how diagnosis will help. Then we will re apply. But meantime it is great to see this post & have hope for the future. Thanks!

[jenniw]

Hello GillandJim

Thanks very much the information about funding you provided. It has come in the nick of time for me. I first ask for help/assessment and diagnosis 7 years ago. My son is seeing a Consultant now but she is reluctant to diagnose FASD. His needs are complex. I will be lodging a complaint because of the length of time it took my GP to refer, the school's refusal to support his SEN needs and their decision to refer me to Social Services because they. My 14 year old adopted son now has a sleeping disorder, OT confirmed balance and co-ordination difficulties and referred him to physio, poor pincer grip, he also has poor pincer grip and memory difficulties. The LA have refused to give him education support while he is unable to attend school. When the current assessment is done, I will have to make an application to Dr Mukherjee's clinic. Good grounds for a complaint.

[gillandjim in reply to jenniw]

If I have interpreted the website correctly we should all be able to get referred for FASD testing, funded via Local Authority, (the Surrey Clinic is £3500 by the way). I have started things off with my GP and Social Workers and the Peadiatrician, to ask how we get this moving. My daughter 13, with us since 61/2years old, has had a dyslexia test at school, we know that she is not dyslexic, but it showed up her really appalling scores against national averages, although she is not bad enough to be statemented, and this made the school take more notice. Although there are some annoying things about Social workers being involved it has got us a higher profile and support in school. We have a monthly TAF meeting, chaired by BANES Social Workers and is a joint "meeting around the child", at School, and it forces the school to do their part, for example how they are using the extra funds etc. to support your actual child, (Pupil premium etc.) We are fortunate that our school is prepared to help, and have put things in place to assist, this will then be followed up at further meetings. This is lead in school by an appointed person for Adopted/children in care/ children with special needs.

It sounds like your 14 year old may have autistic spectrum symptoms, the health/Social services are really lagging if it has not been diagnosed by now. Sorry I am no expert, but I do know that we have to kick up a real fuss to get anywhere!

Hope this is helpful.