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Navigating the Dyslexia Diagnosis Journey

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The process of getting a diagnosis of dyslexia can seem complicated, time-consuming and, ultimately, expensive. In order to help understand it better, we have outlined some of the key considerations to be aware of to help understand this process better.
There are different considerations for those in education and so these have been split into different sections below. What is consistent across all of the sections is that it is unusual for external funding to be available to pay for an assessment of dyslexia, whether through a school, employer or anyone else. The reality is that in most cases, assessments will have to be privately funded, and at an average cost of between £350 to £650, it is a sizeable fee to cover.
Finally, before going in to the different options, while this article refers to dyslexia, the advice is consistent for diagnosing other specific learning difficulties, such as dyspraxia and dysgraphia.

If you are at school

It is very important to start this process by talking to the school’s Special Educational Needs Coordinator (SENCo) as they may be able to provide useful advice about whether a formal diagnosis is necessary.
Under the government’s SEND Code of Practice, schools have an obligation to meet the needs of pupils with dyslexia without requiring them to have had a formal diagnosis. Instead, the code states that support should be put in place based on pupil’s performance. Additionally, schools can carry out some of the standardised assessments included in a full diagnostic assessment in order to measure progress and help identify where additional support with literacy may be required.
If these steps are being taken by the school it may therefore be concluded that having a diagnostic assessment is unnecessary in that it won’t materially change what the school is doing to support the pupil.
Many parents may feel that the school are not providing enough support to their child, and feel that a formal diagnosis will mean that more will then have to be done. However, as schools have a legal obligation to provide support that doesn’t require the pupil to have had a diagnosis, it is not clear that getting a diagnosis will therefore lead to anything changing.
However, if it is concluded that a diagnostic assessment is necessary, the SENCo may be able to advise on suitable assessors that could be approached, but the likelihood is that this will then need to be progressed independently from the school.
For pupils thinking about how they will manage exams, it is important to note that having a formal diagnosis of dyslexia does not automatically mean that the pupil will be eligible for access arrangements (support when sitting exams, such as extra time). The Joint Council for Qualifications (JCQ) set the criteria for awarding access arrangements and a diagnosis, on its, own, is unlikely to meet their current requirements. Again, the school’s SENCo should be best placed to advise on how to apply for access arrangements. If this involves getting a formal diagnosis the school’s SENCo should also be able to advise on who can provide an assessment that meets the JCQ requirements.
Above all, it is likely that things will take some time to get resolved, so plan ahead and start talking to the SENCo as soon as you can. While having to go through the school may be frustrating for some, deciding to go it alone and arrange a diagnostic assessment without their input may not get the results that you want.

If you are at college

College’s and 6th forms operate in a similar way to schools, though the terminology used may have shifted from Special Educational Needs to Learning or Student Support. Whichever term is used, there will be a department within the college that supports students with dyslexia and they are the first point of contact for anyone considering having a diagnostic assessment.
As with schools, the first thing to clarify is whether having a diagnostic assessment is necessary. The SEND Code of Practice applies to colleges, and so a diagnostic assessment is not required to provide support to pupils. However, individual colleges may have internal policies that require additional evidence, such as a diagnostic assessment, to be provided in order to access certain levels of support. The justification for this is that with limited resources available, colleges require evidence to help them decide where those resources are most needed.
For exams, it is also the same process as for schools, with the Joint Council for Qualifications (JCQ) setting the criteria. As such, the college should be contacted to discuss how arrangements can be made for any exams that will be sat.

If you are at university

For anyone at university, much is different when it comes to having a dyslexia diagnosis, and that is because of something called the Disabled Students Allowances (DSAs). This is government funding that students with a diagnosis of dyslexia can receive to help pay for any additional support required. The DSA funding guidelines are very specific in what can and can’t be funded, but broadly, for a student with dyslexia, the funding could provide some money toward a computer, some software to help with reading, writing, note taking and revision, some specialist one-to-one support, plus help with printing costs.
Universities will all have a department that can advise both on how to get an assessment for dyslexia, as well as how to arrange exam adjustments, how to get other types of support available at the university, and how to apply for the DSA funding. Some universities can help with the cost of getting a diagnostic assessment, although this is increasingly rare and will usually be means-tested and possibly only pay for part of the cost. Many universities do not offer any funding at all, and the DSA funding cannot be used to fund an assessment to get a diagnosis of dyslexia.
Exam arrangements are under the remit of the university itself, rather than a centralised body, and so each university will have slightly different policies and processes to follow. Many may require a dyslexia diagnosis to put in place exam adjustments, while some university courses, such as those accredited by a professional body (Medicine, Nursing, Veterinary Science etc) will have something called “competence standards” which may mean that certain exam adjustments may not be permitted.

If you are not in education

Usually, anyone outside of education will need to find a suitably qualified diagnostic assessor and pay privately for an assessment. Some employers may provide help with the cost, but this is far from commonplace. Dyslexia diagnoses are not available through the NHS.
To identify if someone is suitably qualified, there are a few things to know about. Firstly, there are two types of professionals who can assess - specialist teachers/practitioners and educational psychologists.
Specialist teachers/practitioners should have a current Assessment Practising Certificate (APC), and be able to share this to show their eligibility to carry out the assessment. Alternatively, there is a national register of qualified, specialist teacher and specialist practitioner assessors available to search online at https://www.sasc.org.uk/find-an-assessor/.
Educational psychologists, meanwhile, should be registered with the Health and Care Professions Council (HCPC), who maintain an online register to check at https://www.hcpc-uk.org/check-the-register/
As a general rule, assessments carried out by educational psychologists are more expensive than those carried out by specialist teachers, though this does not indicate that one is better than the other. At Ultima Works we work with specialist teachers and specialist practitioners simply to try and reduce the cost barrier to getting a diagnosis, though acknowledge that it remains an expensive process.
For those not in education, the desire to have an assessment is often about helping them to understand how they think and learn, and possibly to provide a context for the difficulties they may have experienced in education and, potentially, in work. The assessment does help to identify those things that are more difficult, but also those things that are areas of strength, and so can help start a process of adjusting how someone approaches tasks to capitalise on their relative strengths.
Within the workplace, there is funding through the Access to Work scheme, which can pay for support, and having a diagnosis can help with applying for this (although again is not a requirement). Much like the DSA funding, Access to Work can help pay for software, equipment and specialist one-to-one support, so can make a significant difference.

A plug for Ultima Works

We believe that a diagnostic assessment, on its own, can lead to more questions that answers. As such, we provide a package that includes an initial screening call, the assessment, and a post-assessment follow-up. While this may seem a lot to have to go through, here, very briefly, is why:
  1. Screening - you are going to spend a lot of money on a diagnostic assessment, so this is an opportunity to make sure it is necessary. Our screening calls will help understand if the difficulties being experienced are likely to be caused by dyslexia (or another specific learning difficulty) and, if so, whether having a diagnostic assessment is then required to achieve the outcome you want.
  2. Assessment - for those who need, or want, a diagnosis of dyslexia, a formal diagnostic assessment needs to be undertaken by a suitable qualified assessor
  3. Post-assessment follow up - in this session we can help make sense of the diagnostic assessment report so you know the specific areas of strength and weakness identified and the diagnostic outcome. We can also help with the next steps in terms of applying for funding if that is applicable, or arranging one-to-one support, or advising on how technology could help.

Summary

Getting a diagnosis for dyslexia can be a complex and costly process. The need for a formal diagnosis varies depending on the educational setting, with schools, colleges, and universities each having their own policies and support systems.
For school and college students, a formal diagnosis may not be necessary to receive support, but it could be beneficial for university students seeking Disabled Students Allowances (DSAs).
For individuals not in education, a diagnosis can provide context for their learning style and potential difficulties, and may help in applying for workplace support through the Access to Work scheme.
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