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Looking for respite for 5 year old with AUTISM

NicolaCummins13NicolaCummins13 Member Posts: 1
edited December 2016 in Coffee lounge
Hi, our daughter has autism and is full on from morning till bed.., we have 4 other children ( older), were just not sure who to contact, can we get funding..and also I don't suppose anyone knows who refers a child for an OT assessment ( she has lots of sensory problems ), our daughters dr said the school have to, when I confronted the school, they said never have they had to do that before..this  is all so confusing :#  xx

Replies

  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Hi @NicolaCummins13

    Welcome to the community! It can be really confusing figuring out the system cant it?

    We have lots of information for families with disabled children, do take a look through and see if it is helpful.

    The service directory might also be useful to, to see what is available in your area.  

    @abstractLucas and @socksoff or other parents on here, do you have any information or support for Nicola?


    Scope
    Senior online community officer
  • Blue FrogBlue Frog Member Posts: 373 Pioneering
    Hi @NicolaCummins13 - If you are looking for respite/short break care, it may be provided by social services in your area.  Is there a Chidren with Disabilites Team? They can do an assessment to see if your daughter is eligible.  They may be able to help explain how to get an OT assessment, I think the process varies according to where you live.   
  • JackieJackie Member Posts: 24 Connected
    edited December 2016

    Hi

    It sounds like life is a real struggle for you at the moment and you are not alone here.

    It might be a good idea to phone the National Autistic Helpline on 0808 800 4104 [ Monday-Thursday 10am - 4pm and  Friday 9am - 3pm] and ask for details of local ASD support groups near to where you live as often these can be  really useful vehicles to help you to find out from other parents how and what services they are accessing and how to go about asking to be assessed for these.

    I would also suggest you contact your local Family Information Service [Google this to find out contact details of the service which covers your area] and ask for them to send you something called the Local Offer which is basically a directory of all services in your area that exists for children with additional needs and their families.

    In order to be assessed for respite you would have to contact your local Children with Disabilities Team [although these are often called different names depending on where you live just to add to the confusion].When you ring your Family Information Service ask for contact details of this team and how to get in touch with them.

    I would recommend that you ask your Children with Disabilities Team for a social care assessment on your daughter which you are entitled to receive under the Children and Families Act. The charity Contact a Family produce some easy to read information on social care assessments and if you are struggling to understand this they too have a very good helpline and they will talk you through how to ask for one of these assessments. The number of the Contact a Family helpline is 0808 808 3555 and this is a Freephone number. The link to the Contact a Family website is:http://http//www.cafamily.org.uk/

    Under the Children and Families Act you are also entitled to undergo something called a Carers Assessment in your own right to see what your needs are as a carer and what help you might need in order to help you to sustain your caring role. If you click on the following link it will take you to the Contact a Family website which produces a very good factsheet on Carers Assessments and again will tell you how to apply for one. Very often these assessments will be carried out at the same time as the social care assessment on your daughter:

    http://http://www.cafamily.org.uk/media/925803/carers_assessments.pdf

    You say that you have other children and I would recommend that you find out about something called Young Carers Assessments which again under the Children and Families Act they will be entitled to undergo. These assessments look at the needs of brothers and sisters of children with additional needs and it may be that they too are entitled to some services in their own right. Carers UK produce a good factsheet on these:

    http://http://www.carersuk.org/files/helpandadvice/4765/factsheet-e1029--assessments-your-guide-to-getting-care-and-support.pdf

    If you find out where your local Carers Assessment is [again the Local Offer should tell you this] they will be able to tell you how you go about requesting a Young Carers Assessment.

    Finally OT's are professionals who work in a variety of settings and the work they do will depend on where they are based. It can be difficult to find out where you can find one who delivers the type of service you are looking for. Some OT's will be assessing for home aids and adaptations for disabled children while others will be offering actual therapy which I think is the type of service you are looking for. If your daughter is under a paediatrician then they should be able to refer you to a paediatric OT. If you still have difficulties with this please do let us know via our Scope helpline as we have regional Information and Advice Workers who are more familiar with local services.

    I really hope this helps but am aware that there is a lot of information to take in here. This just demonstrates how confusing it is for parents to find out how to get help and what help there is out there. Finally do you know about the Family Fund? You might be able to get a grant from them to fund some short breaks and days out with your family. Do have a look at their website to find out how you apply and whether you might be able to get some help from them:

    http://http://www.familyfund.org.uk/

    Jackie


  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Thanks so much @Jackie and @Blue Frog 

    @NicolaCummins13 does this help you?
    Scope
    Senior online community officer
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