Afasic Helpline

Queries from previous months are listed here with the most recent at the top of the page.

Q. I would greatly appreciate your advice regarding obtaining a continuation of SLT services for our son. He is on the autistic spectrum and is nearly 4 years old. Last year he began to speak and has a wide vocabulary, but is reluctant to use words and express himself. He uses little or no communication and often needs prompting to use any words. I still feel he needs and would be benefiting from speech therapy, but as he did relatively well in an academic test of knowledge of language our SALT (from our local Child Development Centre) has written him off her books. I am dismayed as day to day he needs help to develop any social communication.

My question is - is his language development and development of use of language still the responsibility of the SALT? Or is it down to us as parents to try and develop his use of language in real life situations? His use of language is recognised as still being very limited. If it is still the responsibility of the SALT could we ask to see another one who perhaps might take more interest in developing him from where he is?

It would be most helpful if someone from AFASIC were prepared to advise me about the above matters.

A. A difficulty with social communication is as much an impairment as any other type of language impairment, and so very much the responsibility of a speech and language therapist (though in some circumstances much of the day-to-day intervention and support might be delivered by someone else under the direction of the SALT). We are therefore very surprised that your son was discharged by the SALT. It is possible that social communication disorders are not her particular area of expertise. We would recommend contacting the Manager of your local community speech and language therapy service to see what support they can offer you.

We would also suggest you give some consideration to other sources of support for your son. You do not say whether or not your son is at nursery, or what your plans are for him starting school. It is important to bear in mind that much of the support available for children with speech and language impairments is accessed through the education system.

Children who need extra help at nursery or school are described as having special educational needs (SEN) and there are three levels of support for them. Early Years or School Action is when children are given help from within the school or nursery’s own resources. Early Years or School Action Plus is when the school or nursery needs to involve support from other professionals, such as a speech and language therapist or educational psychologist. Children who need more help than the school or nursery can provide from their own resources should have a statement. If your son needs more than occasional speech and language therapy, which seems likely, he will probably need a statement.

All children with SEN should have an IEP (Individual Education Plan) issued by the school or nursery setting out what targets they are working towards, and what help they are giving to meet those targets. IEPs should be reviewed termly, in the case of a child your son’s age.

For more information about the SEN system, we recommend obtaining a copy of the SEN Code of Practice, which is the (statutory) guidance issued by the government to schools and local authorities. Copies are available free of charge by ringing 0845 602 2260 (England only).

Q. My 7 year-old son has developmental verbal dyspraxia and sees a private speech and language therapist fortnightly. He is making progress but experiences a lot of emotional and social difficulties which may be as a result of his speech difficulty or could be something else. I have tried to find information on the more psychological effects of having a speech difficulty but have drawn a blank. There is lots of information about dyspraxia, but not verbal dyspraxia. Would you be able to point me in the right direction?

A. I attach a copy of our leaflet Developmental Verbal Dyspraxia which describes the condition fully. (N.B. The Afasic helpline has a number of hand-outs about specific conditions that can be sent out on request.) I would also suggest trying www.apraxia-kids.org, the website of the American association for children with dyspraxia, which is commonly known as apraxia in the USA.

With regard to the emotional and social difficulties your son is experiencing, these may be due to his speech difficulties. It may also be the case that he has language difficulties, which is not uncommon in children with verbal dyspraxia, perhaps affecting his ability to use language in a social context. Language problems can sometimes be obscured by more obvious speech difficulties. Your son’s language should be, or have been, assessed by the speech and language therapist.

For more information about different types of language difficulties see our glossary sheets, especially nos.: 1, 5, 15, 18, and 22. These may raise questions for you to discuss with the speech and language therapist.

You have not mentioned what support your son receives at school. This is another area where if the child is not supported appropriately social and emotional problems can surface. Does he have a statement? Is the private therapy in addition to NHS therapy, or because they are not providing any? It is possible that your son needs more support than he is currently receiving.

If the school needs advice on how best to support your son, they can call in an educational psychologist, who can recommend suitable strategies or programmes of work.

If none of these suggestions have any impact on your son’s social and emotional difficulties I would suggest asking your GP to make a referral to a clinical psychologist to explore the issue more fully.

Q. My son has a speech problem but I don’t know how I can get him help. I have approached his school but they have been unable to help as they do not have a speech therapist. We have asked his doctor but they say his school will help. We are really upset as we don’t know what to do to help him. I would appreciate it if you could tell me who I should approach in order for my son to get assessed so we can identify his speech impediment which is starting to affect his schooling.

A. You do not need to wait for the school or doctor to refer your son to the speech and language therapy service, you are entitled to do this yourself (I am surprised the Doctor tried to pass this onto the school rather than making the referral). Speech and language therapy is provided by the Primary Care Trust and you can find their phone number in your phone book. You can then phone the speech and language therapy service and request that your son be assessed. However I should warn you that he may be put on a long waiting list and it may be some time before he is seen. It would be worth asking how long he is likely to have to wait for an appointment.

Sometimes parents are unwilling to wait and decide to have a private assessment done. If you decide to go down this route you can find a speech and language therapist by looking on the database of the Association of Speech and Language Therapists in Independent Practice (ASLTIP) at www.helpwithtalking.com. Therapists are listed by locality and speciality. Typically an initial assessment costs around £100 but you would need to check with the individual therapist concerned. Ongoing therapy can prove very expensive at around £60 per session. We do not recommend parents seek private assessments but give this information in case they wish to do so. If you do decide to have an assessment done privately it might be wise to keep your son’s name on the NHS waiting list. If you then saw an NHS therapist you would need to tell her about any previous assessments that had been carried out, as some tests should not be repeated within a six month period.

The outcomes of a speech and language therapy assessment will clarify the nature and level of his difficulties and help determine what support your son might need in the way of therapy and support at school. You could also ask the school if your son could be seen by the local authority educational psychologist to help determine what support he might need at school to enable him to access the curriculum. Again, there may be a long waiting list and it may be necessary to be fairly insistent.

Q. My daughter is nearly six years old and has a severe speech delay, though is cognitively normal. She has no diagnosis as yet, though I think she shows a lot of signs of having verbal dyspraxia. She also has low muscle tone and has been described as being physically dyspraxic. Our consultant disagrees and thinks her delays are too severe for this. She has over the last couple of months started to make some progress with her speech and can say about 10 words. There are still lots of sounds she is unable to form. Is there anywhere I could take her to be assessed by someone specialised in verbal dyspraxia or delayed speech and maybe have a programme of therapy written for her? Our local speech and language therapy visits are a bit irregular at the moment and in my opinion inadequate.

A. I would suggest asking for a referral to the Nuffield Hearing and Speech Centre which is part of the Royal Throat, Nose and Ear Hospital in London. It is considered to be a centre of excellence for verbal and oral dyspraxia. They produce the dyspraxia programme, which is widely used throughout the UK and abroad. As your daughter is already being seen by a paediatrician, it might be best to ask him/her to refer your daughter, as NHS referrals to the Nuffield are usually tertiary referrals (made by a consultant). Alternatively, the Nuffield do accept private referrals, so this could be another way forward if you are in a position to consider this option. We are unsure of the cost, but it is likely to be several hundred pounds.

Another way forward is to consult a therapist with expertise in verbal dyspraxia privately. The Association of Speech and Language Therapists in Independent Practice (ASLTIP) has an online database of members which you can search for therapists in your area with appropriate experience of treating children your daughter's age. The website address is: www.helpwithtalking.com. Therapists vary in what they charge for private assessments, but typical costs are around £100.

You mentioned your dissatisfaction with local speech and language therapy, which I am afraid to say is something we hear from many parents who contact us. You might like to ask the manager of your local service if there is a therapist who specialises in verbal dyspraxia who could assess and perhaps treat your daughter. You do not say whether or not your daughter has a statement of special educational needs. This should guarantee you access to appropriate levels of therapy if it is written in accordance with the law, with part 3 of the statement specifying clearly what therapy your daughter should receive, and how frequently. If your daughter does not have a statement, and you would like to know more about this, or anything else we can help with, please contact us again.

Q. My son is 3. He has been receiving speech and language therapy and will be going to a local nursery for children with speech and language difficulties run by Ican in September. Nobody explains why he can't talk properly or what is wrong, though his speech is slowly improving. He is very bright and has good concentration. What might be causing his speech difficulties?

A. Regrettably, it is rarely possible to say what causes speech and language difficulties with any certainty. Our group of children, those who are otherwise normal but have a specific difficulty with speech or language, are a bit of a puzzle to everyone. Current research suggests that in most cases it is probably genetic, as children with speech and language impairments are more likely in families where there is already someone with the condition (even if only very mildly). However, the gene(s) responsible have not yet been identified with any certainty.

To be honest, you, like most of our parents, will probably never know for sure what caused your son's speech and language difficulties, and it is probably not helpful to dwell on the subject, as it does not make any difference to the type of help he needs. I would advise instead focussing on identifying precisely what aspect(s) of your son's speech and language are impaired, and ensuring he receives appropriate intervention to address them. Skilled professional help, especially if started before school, can make a huge difference to the outcomes for our children.

Your son should get good support at the Ican nursery, and once the speech and language therapist there has got to know your son, she should explain to you what difficulties she has identified in his speech and language and how she plans to address them. This might involve suggesting things that you can do at home to reinforce the work done at nursery. If the therapist does not volunteer this information within a reasonable time-frame (say a month), then ask to speak to her.

A. Many children with severe speech and language impairments qualify for Disability Living Allowance. This is a benefit which is awarded to children, or adults, whose disability means that they need more care or attention than someone of the same age with no disability. Making the case that this is indeed the situation can however be tricky. I recommend you download from our website a copy of our leaflet Claiming Benefits for Children with Speech and Language Impairments, which gives detailed guidance on making a claim. Incidentally, where DLA is awarded to children, it is generally paid to their parents.

Q. My son is now 10, and only has a year left at primary school. I have been advised that he will need a language unit at secondary level. Can you send me a list of secondary schools with language units in our area?

A. Unfortunately, we are not able to provide lists of schools in particular areas. However, we do have in the office a directory published by the government which lists all special schools and units in the UK. If you contact us directly specifying which local education authorities you are asking about, we can tell you if there are any schools with language units and how to get in touch with them. If there are no language units in your area, and many parts of the country still do not have language units especially at secondary level, we can discuss with you what other options you might have.

Q. Our son is verbally dyspraxic. As he is now 7, he will be moving to the junior section at school in September. In our LEA, speech and language therapy provision in mainstream schools stops at this stage, and we are afraid that it will be under threat at his next annual review. As we feel that our son continues to need speech and language therapy, we may have to go to Tribunal. This is not something we would undertake lightly as we do not have the time and energy to chase lost causes. So we were wondering whether an LEA can reasonably be obliged to provide speech and language therapy at junior level if it is provided at infant level, and also whether Afasic can assist at Tribunals or suggest experienced representatives who could assist/represent us.

A. If your son's statement currently clearly specifies the speech and language therapy he receives and the LEA wishes to discontinue it, they would need to inform that they intended to amend the statement. You could raise objections, but if the LEA went ahead with the proposed statements, you would, as you say, then have the right to appeal to the Tribunal. If the therapy is not currently clearly specified in the statement, then it could simply be withdrawn without any need to amend the statement. If this happened, you would not be able to appeal directly to the Tribunal, and your best way forward would probably be to request a re-assessment of need and ensure that your son's new statement clearly specified the therapy he needs. Regardless of the age of the child, LEAs have a duty to ensure that speech and language therapy is provided if it is specified in part 3 of the statement.The Afasic publication Accessing speech and language therapy for your child: a guide to the law explains the legal situation around statements and speech and language therapy more fully.

Your LEA should not have a blanket policy of not providing speech and language therapy at junior, or any other, level. There is more information about blanket policies on our website (see the news item DfES investigates complaints about Surrey County Council). The contents of the statement should be determined by solely by professional assessment of clinical need. In other words, if your son's speech and language therapist is of the opinion that he continues to need speech and language therapy, it should be included in the statement. If she is unwilling to state this in her report for the annual review, you may need to seek independent evidence, certainly before taking the case to Tribunal. The Association of Speech and Language Therapists in Independent Practice (ASLTIP) has an extensive database of therapists which you can search online. Their website address is: www.helpwithtalking.com. If you are likely to go to Tribunal, it might be wise to check that the therapist you use has experience of writing reports for the Tribunal, and would be willing to act as a witness if necessary.

We regret that Afasic does not offer a representation service at the Tribunal, though we are happy to offer support over the phone. IPSEA (The Independent Panel for Special Education Advice) have a Tribunal support line on 01394 384711, and have a guide to the Tribunal called Sent Ahead - for more details and an order form see their website: www.ipsea.org.uk. In certain circumstances, IPSEA are able to provide representation at the Tribunal for parents who might find it difficult to present their case themselves.

Q. I am concerned about my nine year-old daughter attending a mainstream secondary school due to her language difficulties. We are considering whether a private school would be her best option and, if so, do you know if in general funding is available through the LEA to pay for fees/support?

A. In the case of a child with a statement, LEAs must take note of the following considerations when deciding what school to name in part 4 of the statement:

The LEA must also take account of parental preference. Parents have a right to express a preference for any maintained school (i.e. school run by your or another LEA), but can only 'make representations' for a non-maintained school - which includes independent schools. So, if parents request an LEA-run school, the LEA should name it in the statement, provided that it meets the criteria listed above. There is not the same obligation in the case of independent schools, and many LEAs would in any case argue that it is not an efficient use of resources to pay independent school fees, when they have plenty of perfectly good schools of their own that would suit. There have been rare cases where LEAs and parents have reached agreements to share the costs of educating children at independent schools, but LEAs have no obligation to do this and may not be prepared to consider it.

If you feel that an independent school would be the best placement for your daughter, you would need to convince the LEA that it is the only option that could realistically meet her needs. To do this, it is important to ensure that her statement accurately reflects her needs as she approaches secondary school. This might entail getting the statement amended, or if the statement is seriously out-of-date, requesting a full re-assessment and getting a new statement. I would also recommend 'sounding out' unofficially your daughter's current school and other professionals, such as the speech and language therapist, to see if they would support your view that your favoured independent school would be the most appropriate placement for your daughter. If so, it would increase the pressure on the LEA to name your preferred school.

If however the LEA did not name your preferred school, you would have a right of appeal to the Tribunal, where you would need to convince the panel hearing the case that your preferred school was the only realistic option that could meet your daughter's needs.

If you have any further queries about this subject, do contact us again. You might prefer to ring the helpline on 0845 3 55 55 77, as it can sometimes be easier to discuss what can be quite complex issues over the phone.

Q. My child is the only one I know in our area with a speech and language impairment, and I sometimes feel very isolated. Is there any way I can get in touch with other parents who live locally?

A. Afasic has local groups and contacts in some parts of the UK. They should be able to put you in touch with other parents in the area, and may arrange regular meetings or social events for parents or families. Some local groups have websites that you can access otherwise please contact your relevant Afasic office to find out if there is a contact or group in your area.

If there is no Afasic group or contact in your area, you could try the following:

Q. Who is responsible for providing speech and language therapy?

A. This depends on whether or not your child has a statement. If so, then part 3 of the statement should specify clearly what therapy he should receive. Your LEA (local education authority) then has ultimate responsibility for ensuring that speech and language therapy is provided. This means that they would probably ask the local health trust to provide it in the first instance, but if they were unable or unwilling to do so, the LEA would be responsible for providing therapy, if necessary by paying a private therapist to support your child. If your child does not have a statement, or speech and language therapy is in part 6 of the statement, then the responsibility for providing it lies with your local health trust. There is more information about legal rulings on speech and language therapy in our booklet Accessing Speech and Language Therapy for your Child: A Guide to the Law.

Q. I'm not happy with my son's statement. Can I get it changed?

A. This depends on where exactly you are in the process. For instance, are you talking about a draft statement, or a final statement? If a final statement, how long is it since it was finalised? If it is a draft statement, you can still negotiate with the LEA over the wording. Indeed, you should try to do so, if you are not happy with it. If you cannot reach agreement with the LEA, you have the right to appeal to the Tribunal once the statement is finalised. If you wish to lodge an appeal you must do so within two months of the statement being finalised. If your son's statement was finalised longer ago than this, it may still be possible to make changes through the annual review process. However, that does rather depend on what changes you want, and what evidence you have to support your request for a change. We would recommend contacting the Afasic helpline to discuss your particular situation in more detail.

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