Q. I’ve been told that my child has a ‘speech and language disorder’ but have not been given a diagnosis. How can I get one?
A. Actually, ‘speech and language disorder’ is a diagnosis in that it describes your child’s need. However, so many parents ask this question that they clearly do not find the label a very useful one. Numerous conversations on the helpline tell us that parents’ dissatisfaction tends to be expressed in one of two ways:
1. I still do not know exactly what is wrong, and what help my child needs
2. This just tells me my child cannot talk properly, which I knew anyway. It does not tell me why.
If this is how you feel, you may find the following comments and suggestions helpful:
1. A label such as ‘speech and language disorder’ is really an umbrella term, useful for distinguishing children whose primary difficulty is with speech or language from children with other conditions, such as global learning difficulties, for example, but not for telling you what you really need to know. Speech and language can fail to develop properly in so many different ways that what you actually need is a clear description of exactly how your child’s speech and/or language are impaired. So, for example, you might be told your child has a phonological difficulty, affecting their ability to process and articulate certain sounds. Another child might have an expressive language disorder and find it difficult to learn and remember new words. See the Afasic glossary sheets for more information about different types of speech and language impairments.
It is important to ask your speech and language therapist to explain your child’s difficulties in as much detail as possible as this will help you to understand his or her impairment. It should also lead naturally into a discussion about the best ways to help your son or daughter, and again, will make it easier for you to understand what sort of strategies are most likely to work, and why.
Sometimes speech and language therapists are reluctant to give a diagnosis to younger children, for the following reasons:
- It can be very difficult to assess their needs, especially if they hardly say anything yet
- Because speech and language impairments are a developmental condition, they are likely to change the way they present over time, with progress in some areas and sometimes other difficulties becoming more obvious. So therapists might be nervous of making the ‘wrong’ or at any rate a misleading diagnosis.
Neither of these objections should stand in the way of, at the very least, a provisional diagnosis, as long as everyone understands that this can only ever be a description of a child’s difficulties at a given moment in time, and will need to be revisited and reviewed at regular intervals.
2. When faced with the term ‘speech and language disorder’, many people, not just parents, but also friends and relatives, respond by asking what might have caused it. The problem seems to be that, because it is in English, it is not taken seriously as a diagnosis. Labels such as ‘dyslexia’ and ‘dyspraxia’ sound so much more medical and as a result are widely accepted as genuine conditions. In fact, they just mean ‘problems with reading’ and ‘problems with doing’, so are just as much descriptions as ‘speech and language disorder’. It is the obscure, Greek origin of the words that gives them specialised status. The best way to explain/understand the diagnosis is that, like dyspraxia or dyslexia, it is a developmental disability, but one that affects a child’s ability to speak clearly and/or understand or use language.
Q. I don’t think my child is getting enough speech and language therapy. How can I persuade the therapist to give him or her more?
A. The Afasic helpline regularly receives queries like this. Before you can do anything else, you really need the answers to two basic questions:
1. How much speech and language therapy does your child need? AND
2. What is your speech and language therapy service able and willing to provide?
As a parent, you might feel that the answer to the first question should be obvious: as much as possible until (s)he is speaking ‘normally’. Actually, though, it is not always that clear-cut. A number of things need to be taken into account, including:
- How old your child is
- What sort of speech and/or language difficulties (s)he has
- How severe the difficulties are
- Whether or not (s)he has had therapy in the past. If so, how much and whether or not (s)he made significant progress
- Whether or not speech and language is his or her only area of difficulty
The only way to find out for sure how much speech and language therapy your child needs is by asking a speech and language therapist you can trust. If you do not find your current therapist sufficiently helpful, try the following:
- Ask if you can have a second opinion from another (perhaps more senior) therapist.
- Ask for a referral to a child development centre. Sometimes the therapists based there do more in depth assessments and make clearer recommendations about the level of therapy the child needs.
- If you are in a position to do so, pay for an independent assessment
As regards the second question, you might expect speech and language therapy services to provide whatever your child needs, and, all other things being equal, that is probably what most therapists would want to do. The reality, though, is that speech and language therapy tends to be a rather neglected and underfunded part of the NHS. So most speech and language therapy services are forced to stretch their limited resources as far as possible and usually do this by providing standard packages of support for specific groups of children. For example, pre-school children might get blocks of therapy, six weeks on, six weeks off, and school-age children might get seen once every half term.
Having said all that, speech and language therapists have a professional duty to act in the best interests of the children they support and many services do make sure they retain a degree of flexibility in case it is needed. So if your child needs more help than he currently gets, or, for example, needs 1:1 rather than group therapy, it’s always worth asking your speech and language therapist if she can arrange it. Failing that, try approaching the manager of the service.
In the longer term, though, if your child needs more or different therapy than is usually available, he or she will almost certainly be entitled to a statement of special educational needs, and this is likely to be your best way forward. Remember that statements are legally binding on the local authority. They must provide the level of therapy specified in part 3 of the statement. So, if your child needs weekly speech and language therapy, for example, and this is clearly stated in the statement, it will have to be provided. This is the only way most parents of children with speech and language impairments are able to access the level of therapy their children need.
Q. Is it true that you can’t get statements for children with speech and language difficulties any more?
A. The short answer to this question is ‘No’. The law and SEN Code of Practice are clear that a child who needs more or different help than local schools can routinely provide is entitled to a statement. This applies just as much to children with SLCN (speech, language and communication needs) as to children with any other disability, and it is in fact illegal for local authorities to have a blanket policy not to issue statements for children with certain types of need. If you have evidence of any such policy, you are entitled to make a formal complaint to the Secretary of State for Education. Contact the helpline for more information about this.
Nevertheless, the threshold for a statement is quite high and, in recent years, has often been raised further by moves within both national and local government to allocate more SEN (special educational needs) funding directly to schools and reduce the number of statements being issued. Some local authorities have gone much further than others and developed mechanisms for schools to access even more funding or support for children with ‘exceptional’ needs. In some areas, even specialist placements in language resources no longer require statements.
There is no doubt that this policy has had some success. Many nurseries and schools are now much better equipped than they were 15 – 20 years ago to meet the needs of children with speech and language difficulties, and, in some areas, can fairly easily access enhanced packages of support for children with more severe needs. But this is far from being the case everywhere. If, in spite of all your efforts, you are unable to secure the support your child needs any other way then do not hesitate, the ‘statementing’ route is likely to be the best way forward. And be persistent. Your initial request for statutory assessment may be turned down, but you do have a right of appeal and should use it.
Remember that one advantage of the statutory process is that it gives you, the parent, much stronger rights. The other advantage is that the process involves a full assessment of your child’s needs. If done properly, this is the best way of determining what support he or she needs. Finally, of course, the statement is a legal document. The local authority must ensure that your child receives the support specified in part 3 of the statement. Remember that, for all the changes to the SEN system, most of the children Afasic supports still need a statement to access the help they need, so ignore any nagging doubts about whether your child is ‘bad enough’ for one. If his or her needs cannot be met any other way, then he or she is entitled to a statement.
Q. My daughter has difficulties with processing verbal information and her speech and language therapist has tentatively suggested that she might have auditory processing disorder. I know something about it, but was wondering if you have any more information about this disorder please, as it is so specific and very little seems to be known about it in this country.
A. We do have some information about auditory processing disorder, available only in print. If you would like to contact the helpline, we would be happy to send you a copy.
There was an organisation called APDUK which dealt with auditory processing disorder. Although it no longer appears to be in existence, its website can still be accessed and you might find it helpful to read the information there. The website address is www.apduk.org.
Generally speaking, auditory processing disorder is considered to be a hearing-related problem, though it does not usually show up on standard hearing tests. This is because it does not affect children’s hearing exactly, but their ability to ‘take in’ and make sense of what they have heard. However, it is still usually diagnosed by audiologists, but it needs to be an audiologist with expertise in APD, and, as you say, they seem to be fairly few and far between.
Q. I am enquiring on behalf of my son who is 19 and suffers from severe articulatory dyspraxia. He left school (a specialist speech and language school) last summer and is now doing a BTec in Fine Art at our local college. He is currently struggling there and I am wondering if you might be able to tell me where other school leavers go? Do you have any advice on further education for youngsters with speech and language problems?
A. So far as we are aware, there is no research or official statistics about the destinations of young people with speech and language impairments when they leave school. The feedback we receive from parents suggests that the answer is varied. A few go on to higher education. A much greater number go on to further education and then hopefully employment, though this is not easy especially in the current economic climate. A small number go straight into work at 16, possibly in combination with a part time course. This happens most commonly if they can work alongside family members with businesses in e.g. the building trade.
I’m sorry to hear that your son is struggling at college, and would like to help but am unclear where the problems lie. Is he struggling to articulate what he wants to say? Or is he finding it hard to relate to and be understood by the other students? Is the problem with the content of the course? Or some combination of all of these? If you can come back with more detail we will try to assist you further.
In our experience, FE Colleges generally seem to have little knowledge or understanding of speech and language impairments and, so, can be a difficult environment for young people with speech and language difficulties. It is important to have a robust Section 139a assessment spelling out what support the young person needs, though it must be remembered that this does not have the same statutory force as a statement. You do have other rights, though. Under the equality legislation, for example, colleges are obliged to make reasonable adjustments for students with disabilities.
Q. I would like more information about semantic-pragmatic disorders please. My daughter is seeing a speech and language therapist next week and she suspects that this could be the problem.
A. I am attaching a paper on Semantic Pragmatic Disorder written by Margo Sharp, a speech and language therapist who specialises in the subject, which should help you see whether your daughter fits the typical pattern. The paper includes a list of tell tale signs/features, some of which you may be able to identify with, together with a summary of the difficulties seen in the disorder and suggestions for helping children with Semantic Pragmatic Disorder.
Q. I’ve got a seven year-old daughter who has selective mutism and I was wondering if you have got any advice for me. I’ve seen a speech therapist who said there was nothing they could do for her as her speech was fine.
A. Our understanding is that the most effective form of intervention for selective mutism is a ‘step by step’ approach carried out at school, primarily by school staff. For more information contact SMIRA (The Selective Mutism Information and Research Association).
While most of the day-to-day support should be delivered by parents and the school, we would expect other professionals such as educational psychologist and speech and language therapist to maintain an advisory role. It is disappointing that this is not forthcoming from your speech and language therapy service. I would suggest writing in the first instance to the manager of the service to request support from a therapist with expertise in selective mutism. If you do not get a positive response, try writing to the Director of the Primary Care Trust to ask that the speech and language therapy department include support for selective mutism among the services they offer.
Q. My daughter, who is 13, has mild CP. She has recently been diagnosed as having semantic and pragmatic problems and is being referred to SLT by her occupational therapist. However, I am concerned that they will not do anything as they discharged her a few years ago even though SLT was in her statement. Please could you advise on how we can help her at home and what her school can do. She is in a small private school and they are only too willing to help her but don’t know how.
A. A statement is a legal document and local authorities are obliged to ensure that all support specified in part 3 is delivered. It is important that the wording used in part 3 cannot be misunderstood, so it must state clearly exactly how much therapy should be delivered and how often. The Afasic booklet The Proposed Statement explains in more detail the importance of having the correct wording,
In order to ensure SLT support for your daughter’s semantic-pragmatic difficulties, you would need to either get her statement amended to include it, or apply for a re-assessment, citing the new diagnosis as evidence. If you do not already have an up-to-date speech and language therapy report spelling out how much input your daughter needs, you should obtain one. If you go for re-assessment, you can request an up-to-date SLT report. It is also possible to obtain one privately. Qualified speech and language therapists working privately can be found by searching the online database of members of ASLTIP (The Association of Speech and Language Therapists in Independent Practice) on their website. The Afasic helpline can supply a pro-forma letter for requesting a re-assessment if required.
Young people with semantic-pragmatic difficulties often need help with their social communication skills and benefit from ‘social skills’ groups. These may be run by a suitably trained teacher or teaching assistant, or speech and language therapist. You can also help by talking through at home and rehearsing with your daughter what you might say and how you would behave when, for example, going shopping or meeting friends in a café, or travelling on a bus etc. The Afasic helpline has some hand-outs with advice about semantic-pragmatic disorder and how to manage it, and specifically about exams and homework. Please contact the helpline if you would like a copy.
Q. My daughter needs more help than she is getting.
A. I’m sorry to hear that your daughter is not getting the help she needs. Regrettably this is a complaint we hear quite commonly.
As you have not told us very much about your daughter and what help she is currently getting, it is difficult to advise you further. It would help us to help you if you could contact us again, either by email or phone, with the following information:
How old is your daughter?
Is she at school or nursery? If so, is this an ordinary school or nursery, or is it for children with some form of special needs?
What help, if any, does she get at school or nursery? For example, does she have an IEP? Is she in a small, special needs group? Does she work with a teaching assistant etc.? (If you don’t know what any of these terms mean, don’t worry, just tell us what you can, and we will explain to you what you need to know.)
Does your daughter have any sort of diagnosis? If so, who made this diagnosis?
Does your daughter see a speech and language therapist? If so, what help is the therapist giving?
Does she see any other medical or educational professional e.g. paediatrician, educational psychologist, occupational therapist etc?
Q. Our annual review is coming up in a couple of months and we need to say what junior school we want our son to go to. Is there a website or list of schools that are good with speech and language?
A. Regrettably not, and it would probably be quite hard to do for a number of reasons, such as:
- Who would decide whether schools are good or not? Based on what criteria?
- Keeping track of all the schools in the country would be an enormous undertaking.
- Even if schools are good at any specific time, a simple change such as a new head coming in, or a SENCO being replaced, might change things considerably.
Most local authorities do have language units for children of junior school age, which might be worth considering if your son’s needs are quite severe. In most cases, the helpline can give you details of any language units in your area.
If, however, mainstream is considered more suitable for your child, then it is important to visit all the schools you are considering and ‘interview’ them quite carefully. There are two Afasic publications that might help you with this. They are Choosing a School and School Visits – Questions to Ask.
Q. My daughter is 5 ½. When she was about 3 ½, she saw a speech and language therapist who diagnosed a speech and language delay but thought she would ‘catch up’ in time. Since she has started year 1, though, the problems have become more obvious and she seems to be falling further behind. How can I obtain an assessment of my daughter’s speech and language difficulties, and, if possible, a developmental assessment as well?
A. Parents can self-refer their child to the local speech and language therapy service. This is generally provided by your local primary care trust (PCT) and their contact details should be available from your GP surgery or in the phone book. Alternatively you can ask your GP to make the referral.
Your GP can also refer you for a full developmental assessment. This is usually carried out by a team of professionals, led by a paediatrician and typically including a speech and language therapist, psychologist and, often, occupational therapist, especially if there are concerns over fine or gross motor skills. Because several professionals are involved, it is generally described as a multi-disciplinary assessment and is often carried out at a special Child Development Centre, usually, but not always, in a local hospital. The Afasic helpline can supply a list of centres with particular expertise in assessing children with speech and language difficulties if desired.
Have you tried raising your concerns with your daughter’s school? They have an obligation to provide or arrange appropriate help for her if she has special educational needs, as outlined in the SEN Code of Practice. If you do not have a copy, I would suggest you obtain one (they are free of charge) from this no.: 0845 602 2260. In any case, I would encourage you to press ahead with arranging assessments for your daughter, as they should clarify what her difficulties are, making it easier to identify the help she needs.
Q. My five year-old son has just been diagnosed with verbal dyspraxia. I would like general advice as to whether my son should stay at his current school or move to a speech and language unit.
A. We cannot tell you whether your son should stay in his present school or move to a speech and language unit, but can guide you in making your decision. There are a number of things you need to consider including: how severe his difficulties are, what support he is getting at school at the moment and the amount of speech and language therapy he is receiving. Children with significant difficulties often benefit from being in a unit as this gives them access to a specialist teacher and speech and language therapist. It is particularly important that a child with verbal dyspraxia receives speech and language therapy delivered by a therapist with relevant experience. Children with severe verbal dyspraxia may require intensive levels of therapy in order to make progress.
If you would like to email or phone us with more details about your son’s difficulties and the support he is receiving, we will do our best to advise you on the way forward. If you have not done so already, you might like to consider the leaflet What is a language unit? from the Publications section of our website.
Q. I would like to know how to go about getting a statutory assessment and a statement for my son. Both I and his class teacher are doing our best to support him but neither of us have the professional skills to really help him improve beyond what we have achieved so far. Professionals keep fobbing me off and giving me ‘strategies’ to help him that I have been using for years already. I want them to step up and do their bit!
A. As a parent, you have the right to request statutory assessment for your son. You can do this by writing formally to your local authority – we can provide a template of a suitable letter if required. The local authority will then have six weeks, during which they will gather evidence from your son’s school, to decide whether or not to go ahead with the assessment. If they decline your request, you do have a right of appeal to the Tribunal.
It would help your case if you can provide evidence from one or more professionals to accompany your request. For example, a speech and language therapy report is often sufficient. Even if you do not have a recent report, you may have evidence from IEP (individual education plan) reviews that your son is not meeting targets and that the gap between him and his peers is widening.
I suggest you obtain a copy of the SEN Code of Practice, which is available free of charge from Prolog, the publications arm of the Department for Children, Schools and Families, tel.: 0845 602 2260, quoting ref. no.: 581/2001. It is written in plain English and is easy to follow. Please contact the helpline again if you have any further queries on any matter connected with statutory assessment and statements.
Q. My daughter is 22 months. She has been diagnosed with expressive speech delay and referred to speech therapy. She also has epilepsy. She had 5 fits at 8/9 months and was started on medication (epilim). Since then she has been seizure free. I am wondering whether the epilepsy might be causing her speech delay, or could the medication be affecting it?
A. Certain types of epilepsy can be linked with speech and language difficulties and risks are greater if the epilepsy occurs before 2 years of age. However we are unable to comment on whether your daughter’s epilepsy or medication may be causing her speech delay as we are not medically trained. You would need to discuss this with the professionals involved in her care.
We do have an information sheet entitled Epilepsy and speech and language which you can download from the Afasic website. If you go to the leaflets and information section of the website you will find the epilepsy sheet under glossary sheets, no. 24.
Q: I would like to know how to go about getting a diagnosis of Semantic Pragmatic Disorder.
A: Semantic Pragmatic Disorder is a speech and language therapy diagnosis and so should be made by a speech and language therapist, or paediatrician working in conjunction with a speech and language therapist. Sometimes, these days, the term ‘pragmatic language impairment’ is used to mean much the same thing as Semantic Pragmatic Disorder.
If your child already sees a speech and language therapist, you should query Semantic Pragmatic Disorder with her. You may have already done so, and not been satisfied with her response. Semantic Pragmatic Disorder is quite a specialised area of speech and language therapy and, if your therapist works with a general caseload, she may not feel qualified to make the diagnosis. If so, you could request a second opinion from a therapist with greater expertise in this area. Another option is to ask your GP to refer you to a developmental paediatrician at your local hospital. The speech and language therapists who work with paediatricians are often more used to diagnosing these more complex disorders. I would also recommend going down this route if your child does not currently see a speech and language therapist.
Another way forward is to consult a speech and language therapist who specialises in Semantic Pragmatic Disorder privately. A private assessment is likely to cost around £100 – £150, though therapists vary in what they charge so do check before you make an appointment. Speech and language therapists who work privately can be found through the website of ASLTIP (The Association of Speech and Language Therapists in Independent Practice): www.helpwithtalking.com. There are also a number of centres of excellence around the country which specialise in diagnosing and treating the most complex disorders. We have a list of such centres which we can send out on request.
You do not say why you think your child has Semantic Pragmatic Disorder, but of course it is possible that skilled professionals would not agree. I would however expect them to be able to make a clear diagnosis and explain to you why they consider that to be the correct diagnosis. If so, then their diagnosis should make sense to you. If this does not happen, you might well wish to seek a second opinion.
If Semantic Pragmatic Disorder or another severe form of speech and language impairment is diagnosed, this will have implications for the support your child needs at school. For example, in our experience, most children with severe speech and language impairments need a statement if their needs are to be met. Please contact the helpline for more information about statements and other help at school.
Q: My son is 4 and a half and on the autistic spectrum. His language generally has improved though he has difficulty using language with others, especially other children. Because his scores in 1:1 tests are age-appropriate, his SLT discharged him from speech and language therapy. I felt he needed it to improve his social communication skills, so asked to see another therapist. She has written a report saying that his (draft) statement indicates that his social and communication skills need to be developed and that his mother is anxious about this. However, she does not state her own professional opinion, which I think I will need in order to get speech and language therapy included in the statement. Can you advise me what to do to make sure that SLT is included in the statement?
A: The legal situation is clear. A statement must list all special educational needs in part 2, even if the need would not be severe enough on its own to warrant a statement. Part 3 must then specify the support the local authority will arrange to meet the needs listed in part 2. This is explained in our publication Accessing speech and language therapy for your child: a guide to the law which costs £4.00, inc UK P&P.
So your son’s statement should state clearly that he has poor social skills and needs specific directed help to address them. However, it is only likely to do so if there is clear evidence from the reports that he needs this help.
The wording used by the SLT in her report does seem inadequate. We would expect a report to state clearly what difficulties the therapist has identified, how severe they are, and make recommendations about the support needed to address those difficulties. I suggest contacting the therapist, pointing out that the statement must, in law, detail all special educational needs and the support needed to address them. You therefore need her to spell out in her report how severe your son’s social use of language difficulties are, how they are likely to impact on him at school and what support she would recommend he should have. If you cannot persuade her to be more specific in her report, you can trying asking the local authority to ask her for clearer recommendations, pointing out their legal duty to specify in the statement what support should be provided. If you have no success at all, remember that you do ultimately have a right of appeal to the Tribunal. For this you will need a report that spells out the extent of your son’s difficulties and the support he needs. If you think you are likely to have to go to Tribunal, please contact us again to discuss ways of obtaining a thorough enough report.
Q: I would like to claim disability living allowance for my daughter. Please can you inform me how I get the appropriate forms to fill out?
A: The best way is to ring the Benefit Enquiry Line on 0800 88 22 00. It is open from 8.30 am to 6.30 pm Monday to Friday, and 9.00 am to 1.00 pm Saturday. Provided you submit your completed form within 6 weeks of requesting it, any benefits you are awarded will be backdated to the date you made the request. When you ring, it is important to make it clear that you are requesting the form designed for children. There is a different form for people over 16 years of age.
Q. I’m interested in any support or advice you can offer concerning developmental verbal dyspraxia. In particular, are there any learning toys or aids which might benefit the condition? My son is 4. He has regular speech and language therapy and we are seeking to have him statemented.
A. Many toys and games from readily-available sources (e.g. the Early Learning Centre) can help to develop speech and language generally. However, most are not designed to treat speech and language difficulties, though a few, such as puppets, are sometimes used as therapy aids by therapists. There are a number of publishers of specialist materials and programmes for children with speech and language difficulties e.g. Blacksheep: www.blacksheeppress.co.uk and Winslow: www.winslow-cat.com. However these can be expensive and we would suggest consulting your son’s speech and language therapist before buying anything. She is in the best position to know what toys or other materials might be beneficial as she should know the exact nature and extent of your son’s difficulties. She should also be able to advise you on the best way to use any toys you already have or might purchase to help your son.
Afasic has a leaflet on developmental verbal dyspraxia written in conjunction with the Nuffield Hearing and Speech Centre in London. As you probably know, the Nuffield has considerable expertise in supporting children with this condition. If you would like a copy of this leaflet please contact the Afasic helpline. We regret that it is not available via the website.
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.
For further information about speech and language impairments which you might find useful, I recommend:
Talking Point – a website developed by Ican, ourselves and The Royal College of Speech and Language Therapists: www.talkingpoint.org.uk
The Early Support booklet for parents of children with speech and language difficulties. This is part of a series of information booklets for parents of young disabled children published as part of a government initiative. To obtain a copy free of charge ring 0845 602 2260, quoting reference no. ESPP14.
Q. My daughter, who is seven, has severe word finding difficulties and attends a language unit. Can I claim any disability benefits for 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:
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:
Can the school meet the child’s needs?
Will it adversely impact on the education of the other children at the school if the child goes there?
Would it be an efficient use of resources for the child to attend this school?
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:
Your local Parent-Partnership service. This is an information service for parents of children with special educational needs, funded by your local authority but should be independent of them. They may know of support groups in your area. Do check whether they are groups specifically for speech and language impairment, or general special needs groups. If the latter, they may not focus on issues that are particularly relevant or include parents of children with speech and language impairments. To contact your parent-partnership service, ring or look on the website of your local education authority, or you can search.
If there is a language unit in your area, you could ask if they would circulate a note to the parents asking them to contact you if they would like to meet other parents. Alternatively, your speech and language therapy service might be willing to pass your contact details on to other parents who would like to get in touch or meet up.
You might like to consider starting an Afasic group or becoming a local contact yourself. If so, contact your relevant Afasic office to discuss what this might involve.
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.