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Mobility Allowance is now called the Mobility Component of Disability Living Allowance. It is paid to people who have difficulty getting around outside. There are two different rates and they are paid for very different reasons.

The lower rate (£16.50 a week from April 2006 to April 2007) is for people who can walk, but need someone with them (for most of the time) to guide or supervise them when on unfamiliar routes outdoors. This is because of a severe mental disability or a physical disablement.

There can be many reasons for needing this guidance or supervision. Some examples are people who: -

• have a visual impairment
• are deaf and cannot understand spoken or written instructions or directions well enough to get around on their own
• have falls, fits or seizures and need someone to help them cope
• have a mental health problem which causes them to get confused, frightened, aggressive, etc.
• have learning difficulties

The higher rate (£43.45 a week from April 2006 to April 2007) is for people who have a physical illness or disability that severely limits their walking ability. This can be because of something like severe discomfort, breathlessness, poor balance, the risk of aggravating a condition like angina or asthma, or because you walk very slowly.

Carer’s Allowance is a benefit to help people who look after someone who is disabled. You do not have to be related to, or live with, the person you care for.

You can claim Carer’s Allowance if you are aged 16 or over and spend at least 35 hours a week caring for a person getting Disability Living Allowance at the middle or highest rate for personal care.

You can’t claim Carer’s Allowance if you are in full-time education with 21 hours or more a week of supervised study or earn more than £84 a week after certain deductions have been made (such as Income Tax).

The weekly rate is £46.95, which is taxable. (February 2007) This is reduced by the amount of certain other benefits, including State Pension, that you receive. If you receive certain other benefits at £46.95 or more a week, Carer’s Allowance cannot be paid to you as well.

You may be able to get an additional amount for your husband, wife or civil partner or someone living with you who looks after your dependent children.

How to claim

1) You can ask for a claim form over the telephone, by contacting your local benefits office.

2) You can also claim online: http://www.dwp.gov.uk/carersallowance/

3) The Carer’s Allowance Unit can send you a claim form:

Their address is Carer’s Allowance Unit, Palatine House, Lancaster Road, Preston, PR1 1HB

Telephone: 01253 856 123

You can ring these numbers between 9am and 5pm Monday to Thursday and between 9am and 4.30pm Friday.

You may be entitled to a reduction in your Council Tax if you are caring for a disabled person.

You may be entitled to a Council Tax reduction if you are a carer and you:

• live in the same property as the person you are caring for
• provide at least 35 hours a week of care

Also, the person you care for must have one of the following:

• higher rate of the care component of Disability Living Allowance
• higher rate of Attendance Allowance
• an increased Disablement Pension
• an increased Constant Attendance Allowance

The above information is taken from the DirectGov site.

This is a national card that can be used to verify that the holder is entitled to one free ticket for a person accompanying them to the cinema.To apply for the card, you will need to meet one or more of the following criteria:

a) Be in receipt of the disability living allowance or attendance allowance.

b) Be a registered blind person.

The card is valid for 3 years from the date of issue.

Application forms are available from cinemas across the UK supporting this card. Alternatively, download an application form to print out and fill in from the Cinema Exhibitors’ Association Card website.

http://www.ceacard.co.uk/

Statements - Part 3

Issues of importance and the law

This is part of a much longer document for an MA module on SEN which can be found at http://teach.newport.ac.uk/sen/sen200607/MAsenLaw.html

Therapies

Speech and Language therapy is, in almost every case, educational: R v Lancashire ex parte M [1989] 2 FLR 279. A must read case!

The Tribunal has found both Occupational Therapy and Physiotherapy to be educational in certain circumstances, although not in the case of B v Isle of Wight [1997] ELR 279, notwithstanding that it was felt by the judge that both would have educational benefits. In addition, the Tribunal has also found hydrotherapy and music therapy to be educational on the evidence in particular cases.

However, nursing care for a child who needed permanent nursing supervision for safety at school is NOT educational and so is not to be included in Part 3: City of Bradford v A [1997] ELR 417.

Specificity The legal position

Section 324 (3)(b) Education Act 1996 requires a statement of special educational needs to “specify the special educational provision to be made for the purposes of meeting … needs”.

Regulation 16 and Schedule 2 of the Education (Special Educational Needs) (England) (Consolidation) Regulations 2001 requires provision to be specified in terms of “any appropriate facilities, equipment, staffing arrangements and curriculum …”

The 2001 Code of Practice makes it clear in Paragraphs 8:36 and 8:37 that the special educational provision in the statement MUST be specified clearly and in detail and normally quantified.

The case law

The current leading case is L v Clarke and Somerset County Council [1998] ELR 129. In his decision, Laws J said (at para 137B) that “the real question … in relation to any … statement is whether it is so specific and so clear as to leave no room for doubt as to what has been decided is necessary in the individual case. Very often a specification of hours per week will no doubt be necessary and there will be a need for that to be done.”

However, in the true judicial way of not making an absolute decision, he also said (at para 136H) that “there will be some cases where flexibility should be retained”.

It has been that statement which has been explored through the courts in recent years. In E v Rotherham MBC [2002] ELR 266, the High Court held that the words “any change in the level [of] support will require a formal discussion between the LEA, the NHS Trust and one or both of [the child’s] parents …” was not specific if there was to be a review. As a six-monthly review was built into the statement, the level of provision after that review would be uncertain.The court also made the point that if the level of provision was to be amended as a result of discussion, as the clause was drafted, there was no need for there to be an amendment to the statement. That, consequently, deprived the parent of any right of appeal if she disagreed with the revised level of provision.When the Toolkit was published it was noted by IPSEA that the language in section 7 (which deals with writing statements) was not the same as the Code and reflected the position in the draft Code. A legal challenge was mounted against the Secretary of State by way of judicial review.Mr Justice Newman heard the application for permission on 26 March 2002 (reported as R (ota) IPSEA Ltd v S of S Education and Skills [2003] ELR 393).

IPSEA appealed that decision and the Court of Appeal gave judgment on 20 January 2003. In the judgment Lady Justice Hale said:

“If Parliament had meant specification to mean numerical quantification no doubt it would have said so…. However, the statement clearly has to spell out the provision appropriate to meet the particular needs of, and objectives identified for, the individual child. It must be addressed to the needs of the child rather than to the needs of the system.” (Paragraph 14)“It follows that any flexibility built into the statement must be there to meet the needs of the child and not the needs of the system. But the needs of the child cannot be seen in a vacuum. They may fluctuate for a wide variety of reasons.” (Paragraph 15)“The Code requires precision as the general rule, but provides for flexibility where this will best meet the needs of the child…. It remains the case that vague statements which do not specify provision appropriate to the identified special needs of the child will not comply with the law.” At the same time the Court of Appeal heard the appeal in the case of E v Newham London Borough Council and the Special Educational Needs Tribunal [2003] ELR 86.In this case, the Tribunal decided that the pupil should attend a special school as proposed by the LEA rather than a mainstream Catholic primary school. As therapeutic input on a daily basis was integrated in the school day the Tribunal decided that it did not consider it to be appropriate to specify the number of hours of therapy per week and, in any event, there was no evidence before it as to what precise level of provision would be required. In the circumstances, the Tribunal concluded that the level required should be determined by the specialists concerned following an assessment once he arrived at the school.The Court of Appeal agreed. The judges who heard this case were the same three who heard the IPSEA case and they gave judgment on the same day. They regarded this case as being a good example of the flexibility mentioned above.

(c) Blanket policies

The DfES circulated to all Chief Education Officers a letter dated 31 July 2003 (ref LEA/0283/2003) concerning “blanket policies in specifying and quantifying provision in children’s statements of special educational needs”. The document can be found at www.teachernet.gov.uk/LEAmailing

It appears that there have been a number of complaints that some authorities are operating, or planning to operate blanket policies of never quantifying SEN provision in statements.

As indicated above, many cases appear to relate to the delegation of funding. Some authorities have or are intending to specify the Part 3 provision by reference to a particular band of funding from their local system of calculating funding or a sum of money. An example would be “the school will receive Band 3 funding to make the appropriate provision”. Other authorities have decided to leave it to the school in terms of options. For example, allocating a sum of money but stating that it is equal to a particular number of hours of support from a support assistant or a pro-rata amount for a Support Teacher (my experience is that one hour of teacher time equals two hours of LSA time) or some equipment. In these cases there is no attempt to specify the provision to meet an individual’s needs.

The letter to the LEAs makes it clear that blanket policies are not permitted. Taken with the Court of Appeal’s decision in the IPSEA case it is probable that the arguments are now over. The principle should be clear: flexibility is only permissible if it is to meet the needs of an individual pupil.

E v Flintshire CC and SENT [2002] ELR 378

It may be bureaucratic to set out every detail of the provision as long as it was adequately specified and well understood by everybody. In this case Part 3 provided for one hour of specialist support from the LEA’s learning support service with the teacher to be appropriately qualified for such support work, the input was to be a structured apprenticeship and there was to be a variety of other specified support and learning methodologies.

W and another v Bedfordshire County Council, Lawtel, 12 March 2004

Where a draft statement of SEN referred to a “package of care” that package had to be specified an it was insufficient to state merely that such needs would be provided by an authority’s social services department.

(d) What should parents be expected to do?

DM and KC v Essex County Council and SENDIST [2003] ELR 419

Parents are not required to make special educational provision for their own child and so the Essex ‘Good Beginnings’ programme was unlawful. This programme is an alternative to the Lovaas programme and funded 10 hours a week of professional input, expecting the child’s parents to carry on the input outside the 10 hours. There is nothing to stop the parents willingly providing special educational provision but they cannot be compelled to do so.

R (ota KW) v SENDIST and Rochdale Metropolitan Borough Council, Lawtel, 22 July 2003

A tribunal’s decision to place a disabled child in a day school with professional support out of school hours did not impose on the child’s parents an obligation to meet part or all of the LEA’s statutory duty to provide for her special educational provision.

The questions to be asked in these cases are:

does the statement either directly or indirectly allow the LEA to escape its statutory duty?

When the contribution the parents were to make has been identified, was this, in law, special educational provision? That is, whether it directly related to the child’s learning difficulties?

Once the statement sets out the special educational provision the child should receive, the local authority has an absolute duty to provide it (s324(5)(a)(i) EA). If, for example, speech and language therapy is written into Part 3, it is the duty of the authority to provide it, even if in practice the health service provides it. If, for whatever reason, the health authority does not or cannot provide it, the local authority is not absolved of its obligations.

Can the school provide the special educational provision set out in the statement? This is often the determining factor between the different schools proposed for Part 4.

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One member of ASDf discovered recently that although holiday insurance covers their entire family, it would not cover them for anything that happened as a result of their child’s Autism.

This is because Autism is a “pre-existing medical condition,” and needs to be specifically covered in any holiday or travel insurance policy.

There used to be a selection of insurers that provided this cover on the website http://www.youreable.com/ However, it has now been deleted.

When it was there, it listed:
Aktivcard
http://www.snowcard.co.uk/

Chartwell Insurance of Edgware 020 8958 0900

Club Direct 01243 817766
http://www.clubdirect.com

Direct Travel 01903 812345

Directline
http://uk.directline.com/dl/directline.jsp

Go 0870 152 5840
http://www.gotravelinsurance.co.uk

Preferential 0870 600 7755
http://www.preferential.co.uk

http://www.fogginsure.co.uk/gag/insurance.htm

http://www.quotetravelinsurance.com/

Tesco 0845 300 8800
http://tesco.com

Please note: We have not used any of these insurers, or even checked if they still offer insurance with extra cover for people with disabilities, so this list is not a recommendation in any way.

www.youreable.com also recommends Medscan, tel: 0800 181 532
This facility calculates whether extra insurance is required for a particular medical condition, and how much that extra cover will cost.

In the future we hope to add to this page some of the things that parents need to think about when booking holidays and buying insurance for them.

Here are a few examples of caselaw relating to statements.

1. L v Clarke and Somerset County Council 1997 where the judge said that

“in very many cases it will not be possible to fulfil the requirement to specify the special educational provision considered appropriate to meet the child’s needs, including specification of staffing arrangements and curriculum, unless hours per week are set out.”

2. The courts have also said that vague Statements that only describe provision in terms of a band or cash figure, or position on a matrix are unlawful. This LEA practice would not be enough to satisfy the requirement to specify provision in part 3 of a Statement. The judge in the case R vs. Cumbria County Council ex parte P 1994 said that the appeal process would be impossible to operate if the parent did not know the nature of the provision that the authority intended to make.

3. In the case of C vs. Special Educational Needs Tribunal and London Borough of Greenwich (1999)
ELR 5 the judge determined that LEA’s should not delegate their duty to someone else.

4. R vs. The Secretary of State for Education and Science, ex parte E (1992) 1 ELR 377, concerns the requirement for the statement to include all of a child’s special educational needs, and the provision to meet those needs. Ex parte E, which says that a need in part 2 of a statement must have a corresponding provision in part 3.

5. Somerset County Council judgement which says the statement must leave no room for doubt as to what has been decided is necessary in the individual case, and hours per week of provision should be set out.

In addition, there is the speech by Minister Baroness Ashton speaking about the wording of the new Code of Practice in the House of Lords She said,

“We have said that we would always wish to see specification take place. I underline the word “always”. She went on to say that “The provision must be specific as to what is provided and it must be quantified in most circumstance…. We believe that there is a need to have a little flexibility. But I put it on record that that does not mean that LEA’s should do anything other than normally quantify.”

There are also “four historic court cases” on the IPSEA website

In some areas, Social Services will only accept a referral if the client has an IQ of 70 or less. This is one of those developments that many SS employees assume is supported by the law, but isn’t.

CarerQuie has researched this information for us:

“There is no eligibilty criteria in childrens’ services.

Under section 17 (10) of the 1989 Childrens’ Act,the only criteria for a ‘child in need’ is that the child IS DISABLED.If they refuse on the grounds that they don’t meet the criteria,point out that the law states the only criteria for initial assessment is that the child is disabled and that you expect them to carry out their statutory duty and complete the initial asessment within 7 WORKING DAYS (as the legislation requires).

Under the same section,if a core assessment is then carried out,it should be completed within 35 working days.

Eligibilty criteria does exist for adult services,though.“

For adult services, it may be worth pursuing the argument that IQ doesn’t refer to ‘useful intelligence.’

In its advice to parents applying for the Disability Living Allowance, the National Autistic Society says,

“People with autism may do well in abstract intelligence tests but sometimes cannot apply their intelligence in a useful way in the real world. An IQ test can give a misleading impression of ‘useful intelligence‘.

To support your claim for ’severe mental impairment’ due to problems with ‘useful intelligence’, you could mention that:

• your child’s condition is on the autistic spectrum (ie the range of disability levels associated with autism)
• autism is believed to be caused by brain damage or arrested brain development
• your child cannot make a sound and safe judgement, and then act on it, because of poor communication and social skills, together with obsessional behaviour and clumsiness (if relevant).

Give examples, such as:

• not understanding that emergency vehicles can travel on both sides of the road
• lack of attention caused by obsessions (eg reading car number plates without paying attention to traffic)
• phobias (eg of dogs or crowds)
• abnormal responses to sensations (eg difficulty judging distances and speed of cars or responding to loud noises by covering the ears and refusing to walk on).”

These arguments almost certainly apply to social services; they are accepted as valid by the DWP.
This is on a slightly different aspect of the topic, but:

In 2002, Lord Justice Simon brown ruled in an appeal against a DLA decision,

“I conclude that whilst in every case the claimant’s IQ as conventionally tested is likely to be the essential starting point for considering the impairment of intelligence, and whilst it is perfectly reasonable to take an IQ of 55 or less as the prima facie touchstone of severe impairment, that test and that score will not invariably prove decisive. Rather it should be recognised that an IQ result may give a misleading impression of the claimant’s useful intelligence and that in some cases at least an impairment of social functioning will shade into an impairment of intelligence. Tribunals and Commissioners will accordingly need to admit and consider evidence other than a mere IQ score.“

When the Social Security Commissioner commented on that ruling in 2003, he referred to Uta Frith (”Autism - Explaining the Enigma” 1989)

“There is a real difference between “test intelligence” and “world intelligence”. IQ tests are purposely constructed so as to be as independent of social context as possible. Some people have difficulty in solving problems in tests for their own sake outside a real-life context; they, therefore, score badly in IQ tests. Autistics, however, at least in certain tests, score unusually highly just because they are being tested outside the real-life context. Their success in IQ tests, in short, is not a true indication of what one may call their useful intelligence and it is surely the impairment of the claimant’s useful intelligence to which the regulation is directed.“

Granted, this ruling does not apply to social services criteria - but the principle behind it is sound and, in my opinion, transferrable.

“The DRC can give advice on the Disability Discrimination Act (DDA) 1995.
This issue is not within the scope of the DDA as it involves Local Authority Social Services carrying out their public function.
This means it is not a service that is available to members of the general public.“

Which means that government agencies are exempt from the Disability Discrimination Act when delivering public services.

It goes on to say,

“Social Services will have duties under the Disability Equality Duty which comes into force on the 4th December 2006.
Under this they will need to take into consideration the needs of disabled people when carrying out their function.“

So, after a long, hard fight you finally get your claim for DLA awarded. Apart from a celebratory bottle of wine and some drunken contemplation of how to spend the, now considerable, back payment, what do you do?

Ever heard of the Special Payment Scheme?

Probably not, as this is one of the best kept secrets in DWP – the ability to request a compensation payment where maladministration has led to financial hardship or inconvenience.

It is not part of your claim for benefit and you cannot lose out because of requesting one – it costs nothing to request, is dealt with by a separate unit not responsible for your claim, and does not affect your level of entitlement. If everyone requested one of these, the Department would have to buck up its ideas (and employ more staff, as it takes half a day just to prepare a single file,) but very few people know of its existence.

In short – there is no reason not to ask for one if you think you fit the criteria, as the worst they can do is say no. You can even request one where you have been turned down for benefits and have lost your appeal – if the conduct of officers during your claim fits the criteria.

Maladministration is generally regarded as bias, neglect, inattention, delay, incompetence, ineptitude, perversity, turpitude and arbitrariness. By now, you’re probably thinking this is a pretty good description of the people who dealt with you.

A payment can be awarded where maladministration has caused any of the following:

Actual financial loss – keep your receipts people; if they mess up, you can claim it back – stamps, phone bills, replacement documents, travel costs, bank charges, etc.

Delay in payment – only where the amount of benefits is over £100 in arrears. A delay is generally calculated at standard interest rates (Average Retail Shares and Deposits rate) or at compound interest rates where it has been a long period of delay. Payment of less than £10 will be discounted.

Consolatory Payments – for gross inconvenience resulting from persistent error, gross embarrassment, humiliation or unnecessary personal intrusion and finally severe distress which has significantly impacted on a person’s mental or physical health.

How to claim:
Write a letter to the Customer Service / Complaints Department of the office that dealt with your claim, clearly heading up the letter “Special Payment Request”. Quote the reference number, and clearly state that you “would like to request a Special Payment on the following grounds:”

• Logically and rationally, give an account of everything that’s happened on your claim:
• Detail every piece of bad advice,
• Every failure to take into account perfectly obvious circumstances (such as the tribunal awarding you it without hesitation after your case was disallowed for no good reason,)
• Every missed call-back and every unanswered letter,
• Every contradictory answer,
• If there’s been a delay in your appeal being written by the Department (they have 90 days in which they’re supposed to write it,)
• If there’s been a delay in responding to your letters (they have 7 days for a complaint and 10 days for an enquiry.)
• Every time an operator has been shirty or rude with you,
• How hard the DLA form was to complete in the first place and how most of the questions on the standardised form are not suitably tailored to mental disabilities.

Now detail how this has affected you:

• The stress levels,
• The amount of time you took completing the form, writing to them, phoning them and worrying,
• The exact length of delay in getting a payment, from the form going in to the payment hitting your bank account,
• The impact on your family life etc.
• Any time off work you’ve needed because of it,
• Any extra expenses that were incurred due to the extended claim process.

Add copies of any receipts, phone bills or actual charges you want recouped, and send it off having obtained a receipt of postage (recorded delivery not needed, as that’s an expense that probably won’t be refunded – get a receipt of posting (free), then phone the office two or three days later to check they’ve received it.)

Now wait up to a month or so for an answer – special payments go to a centralised unit and take weeks to be resolved.

Basically, a special payment claim is an opportunity to get something back for the blood, sweat and tears involved in a DLA claim, and it’s something of a “fire and forget weapon” in that you can dash off a 15 minute letter to claim it, then put it out of your mind and then treat anything that comes out of it as a bonus that you didn’t expect. In this case, the money is for you and the trouble you’ve experienced, not for the child, so claim it and crack open a bottle with it; if you’ve gone through that legal and bureaucratic nightmare and come out with your sanity intact, you deserve it

Every parent of a child with and autistic spectrum disorder needs to get themselves a copy of the Special Educational Needs Code of Practice. It’s published by the Department for Education and Skills and should be the blueprint for every LEA and school for how they manage children with SEN.

It sets down principles for how they should liaise with parents, the different stages of provision and how to manage the statementing process.

For parents, this is your first tactic to use in getting your school or LEA to pay some attention to you. Quoting the Code gets results.

You can download it from here or get a printed copy for free by phoning 0845 6022260 and asking for document ref: DfES/581/2001.

My advice would be to get the printed version. It’s going to get a lot of use, so you need it to be robustly bound. Makes a good noise when you plonk it on the table at meetings with the LEA as well.

As a parent of an Autistic child, I always dreaded it when friends asked us to go to LegoLand. Making excuses was all the more harder as we only live 5 minutes away.

I thought that even the idea of a queue, would be enough to send my son into a total meltdown. But we decided to give it a go.

One of the good things is if you have been awarded DLA (Disability Living Allowence) or just a diagnosis letter, you take proof with you and you get an ‘exit pass’. This means that you get to jump the queues, and go in through the exits. This made things so great, no queues and no waiting means no meltdowns for us.

If I had known about the exit pass I really would have gone sooner with my son.

Also, one adult will be designated as the carer for the child and gets free entry.

LegoLand is great for all ages and our 3 year old NT daughter had just as much fun as well. There are lots of different types of foods available, so everyone will find something that they like. (Although it can be pricey)

One thing to note, if you decide to upgrade your ticket to a year pass, remember there is no queue jumping for this, your exit pass doesn’t work here! You’ll need to fill in a form for each year pass you need, and it’s a long queue as they put the details into a computer & take your picture. My advise is to grab the application forms as you enter the park and fill them in as you go around, and don’t leave it until the last minute to join the queue.

There are grants available for people who receive the DLA to have their home insulated.

However, these grants are often administrated locally.

There are companies that will help you, such as Abbey Insulation Ltd (please add links here if you know of any others) and last year British Gas was also doing them (British Gas Website)

It is probably best for you to find a local company that installs insulation, and ask them about grants.

The Disability Living Allowance is a benefit from the Department of Works and Pensions for people who need help with personal care due to their physical or mental disabilities.
People with severe Autism can apply for the DLA, and are given an award according to the severity of their condition and the amount of care needed.

There are two components to the DLA:

• Care – for people who need either assistance with routine activities of daily life, or supervision to keep them safe
• Mobility – for people who cannot walk or get around without some form of assistance (see the WikiBar entry on the Mobility Allowance)

And the awards are given in three bands (rates given are current on 9/6/06):

• Higher rate: £62.25 per week
• Middle rate: £41.65 per week
• Lower rate: £16.50 per week

Why would you apply?

The DLA is not compensation for Autism, and nor is it awarded for challenging or unusual behaviour. It is awarded only for people who need extra assistance, care or supervision. Typically, people with Autism or their carers could apply for some or all of these reasons:

• Inability to use the toilet
• Feeding problems
• Assistance with other bodily functions (e.g. menstruation, minor illness, other medical conditions etc)
• Difficulties handling a person in troublesome situations
• Unresponsive to attempts to teach self care
• Need for constant supervision both inside and outside the home
• Unusual sleep patterns, requiring supervision/intervention during the night

How to apply

You can apply using your computer by going to the DirectGov website here. The forms can either be printed out and filled in by hand, or filled in online.

However, if you phone the Benefit enquiry Line (0800 88 22 00) then your claim is backdated to the day you requested the forms, not the day they were received by the DWP.

Or you can apply at your local social security office.

Filling in the Forms

It’s slow and tedious. However, our advice is this:

• Do it a bit at a time over the course of a couple of weeks
• Have one person sitting at the form filling stuff in, and another available to search for things like reference numbers, National Insurance numbers, bank details, names and addresses of doctors, schools, social workers etc. (It also helps if they pour the wine and mop fevered brows.)
• Take photocopies of everything before you post anything
• If you already have a Statement of Special Educational Needs, use it.
• Get supporting references from your paediatrician, health visitor, social worker, care workers, nursery nurses and teachers

Airedale Computers (”Helping the needy get nerdy since 2001“) is based in Airedale, West Yorkshire.

It is an award-winning, non-profitmaking enterprise that collects donated computers from businesses across Yorkshire and the Humber. They also have the secondary objective of providing employment and work experience.

These computers are then used for training the unemployed, discounted resale to the general public, and donation to charitable, voluntary and other good causes.

Airedale Computers has already provided a system for one member of ASDf.

They can be found at http://www.airedalecomputers.com/

The Active Centre - Social enterprise Park
Stansfield Road
Airedale
Castleford
WF10 3UA

Tel: (01977) 736283

Getting a diagnosis of Autism can be many things:

• it can be a devastating shock
• it can be a relief because you finally know what is going on, and can ask for help
• it can be confusing and frightening.

In the time to come, you will become an expert in caring for special needs children, in handling challenging behaviour and in negotiating local government bureaucracy.

To help you as you begin to learn these essential skills, and to assist you as you get access for the essential support your child needs, I recommend that you do two things.

1. Get a reliable regular babysitter. The first casualty of Autism is the parents’ lifestyle. Caring for a child with ASD can be relentless and unforgiving, and there is every possibility that your social life will suffer and even your own relationship can start to suffer. Finding a babysitter who is willing and able to care for a child who presents challenging behaviour can be very difficult (you need someone with the understanding of a genius and the patience of a saint) but any couple needs quality time to keep their relationship going: ASD parents need is so much greater.
2. Start writing a diary. This doesn’t need to be your memoirs for publication (although I wouldn’t begrudge you the fame and fortune) but it is going to be invaluable as you negotiate the minefield of local authority bureaucracy and petty mismanagement. Buy a large sturdy notebook and keep it on top of a large solid cardboard box. Every time you get a letter, when you have dealt with it put it in the box and note the date and contents in the book. Write a summary of every phone call, including date, time, who you spoke to and their ‘phone number. Every time you go to a meeting, take notes during the meeting, write a line or two in the book, and but the notes in your box. You just would not believe how many times parents have needed to refer to this information when making a complaint or taking legal action against a school or an education or health authority.

Agencies
IPSEA - Independent Panel for Special Education Advice
NAS - National Autistic Society
AFASIC - Organisation supporting parents of children with speech and language disorders

Professionals
SALT - Speech and language therapist
EP - Educational Psychologist
OT - Occupational Therapist

Regarding Diagnosis
OCD - Obsessive Compulsive Disorder
OCP - Obsessive Compulsive Personality
ASD – Autistic Spectrum Disorder
ASC - Autistic Spectrum Condition
PDD/PDD-nos - Pervasive Developmental Delay (not otherwise specified)
ADD - Attention Deficit Disorder
ADHD - Attention Deficit Hyperactivity Disorder
dx - Diagnosis
dx’d - Diagnosed
AS - Aspergers Syndrome
HFA - High Functioning Autism
LFA - Low Functioning Autism
NT - Neurotypical/”normal”

Internet Terms
dd - Darling Daughter
ds - Darling Son
IYKWIM - If You Know What I Mean
LOL - Laugh Out Loud
TBH - To Be Honest
LMAO - Laughing My Ass Off

Captain Noah’s, Children’s Village, Rhyl.

Captain Noah’s is a medium sized indoor play area near the sea front. We have grandparents in the area and Captain Noah’s is one of our regular trips out when we are visiting them. There is free parking along the coast road but our son is of the opinion (which he loudly voices!) that the best place to park is in the underground car park. It’s pay and display but worth it as you get to race your siblings up the spiral ramp and the entrance to Captain Noah’s is just opposite at the top with no roads to cross.

Once inside the idea is that the children wear a coloured wrist band stating the time they arrive. Our son has so far refused to wear his and the staff are always happy to put it on one of us instead. All the staff we have encountered there have made it obvious that they understand our son’s special circumstances and are happy to make allowances.

The play area is not vast but has everything the children need. It is in the middle of the room, giving access from all sides and there are stairs at both ends so parents can get to the upper level if recue operations are called for! There is no designated area for tinies but parents can climb in with them in some of the ground level attractions, including a ball pool with a small slide.

We aim to get there when it opens in the morning and should be fairly quiet. The staff will intervene in ‘incidents’ if the parents don’t. I consider this a positive as we always supervise our children in these places but isn’t there just always some child intent on causing trouble while the parents hide behind the newspaper and pretend not to notice!!

There is a (expensive!) cafe. Unfortunately it’s become part of the routine for our three to have a kit-kat and slush puppy each within minutes of arrival!

There is a small children’s funfair close by. It’s also become part of the routine to wander up there after leaving Captain Noah’s and have a couple of rides.

Worth a visit for a nice (and hopefully tiring!) morning out.

Eirias Park Leisure Centre, Colwyn Bay.

This pool is ideal for families as it has a really nice shallow part for little ones with fountains, water jets and a mini jacuzzi. For the more adventurous there is a big slide, although this is not open all the time.

Last summer our son had a five day course of beginners swimming lessons (for 3-5 year olds) here. He loves the water but we did wonder how he would cope taking part in a lesson instead of doing his own thing. As it turned out it was fantastic.

When his Gran booked the lessons she explained that he had communication difficulties (we didn’t know it was ASD at that stage) and found them very helpful and keen to meet his special needs.

They arranged for one of his grandparents to stand at the side of the pool (instead of going into the cafe/viewing area with the other parents) to give him security and also to be on hand in case of problems.

The instuctor was keen to adapt her style in order to meet his needs. She quickly caught on to the idea of using his name when she wanted the group to do something instead of “lets all …”. At one point she asked him to go first and when he swam width ways across the pool (because that’s what they been doing up to then) instead of length ways as she wanted, she immediately apologised and said it was her fault for asking him to go first and that from then on she would ask one of the other children to go first so he could watch what they did and copy.

It was a great experience for him, not only did his swimming improve but he gained valuable experience of being in a group. He thoroughly enjoyed himself and couldn’t wait to get there in the mornings.

Highly recommended.

Situated just off the A55 between St Asaph and Abergele, Bodelwyddan Castle is a large country hotel.

There are various things to do here but we visit mainly for the children’s playground and the maze is quite good fun too. You have to pay to enter the grounds but it’s not too expensive. The playground is easily found at the far side of the hotel at the bottom of a field. Follow the path around the hotel and you can’t miss it. We like it as it is never too crowded and fresh air is abundant. Do check whether there are other events taking place as the playground is sometimes unavailable.

The playground has all the usual attractions but our children particularly enjoy a wooden train they can sit in and pretend to be driver, fireman, conductor etc.

The maze is close to the hotel. The children enjoy playing hide and seek in it but it’s nice and compact so they don’t get lost!

Worth a visit.

The Elizabeth Svendsen Trust, The Donkey Centre. Leeds. Telephone 0113 261 9249.

EST is a dual purpose charity. They rescue and care for donkeys and offer riding for special needs children and their siblings (which I think is a great plus as siblings can so often feel a bit left out). Anyone weighing up to 8 stone can ride. Bigger children can have a ride in a small cart pulled by a donkey.

Tucked away in the countryside but accessible from Leeds, Ilkley and surrounding areas, the centre is modern, spacious and clean and the donkeys are beautifully cared for. They have a large indoor arena for all weather riding. There is no charge, though donations are very welcome as they have high running costs.

The centre is open during the week and used by groups from nearby special schools and individuals. I used to take my son (and his little sister) for a weekly lesson but the centre had to close during the foot and mouth crisis and by the time it reopened he was at full time school. I would highly recommend it to anyone with a special needs pre-schooler.

They have lots of volunteers and each child has at least two helpers, one to lead the donkey and one or two to walk alongside the child and support as needed. The children are encouraged to do things like pick up coloured bean bags and drop them into the appropriately coloured bucket. Language skills are encouraged by asking the children to give the donkeys simple commands like ‘Ready, steady, go’ or ‘Trot on’. All at a level appropriate to the individual child and with the emphasis on fun with a purpose.

There is a playroom with toys and books and you can stay for as long as you like. We used to make an afternoon of it. Although all ages are welcome the toys are geared to younger children. There is a nice (small) outdoor area with sit and ride toys, a track to ride them on, a play house and climbing frame. Tea, coffee and juice are provided.

The centre is open one Saturday every month between 10 and 2. Any family with a special needs child can just turn up for a ride. The rides are shorter than during the week to accommodate the numbers of children. It can get quite hectic but there are quieter corners to retreat to with rabbits to stroke and a video corner (which we have put to good use in the past!). They sell very reasonably priced and tasty sandwiches, crisps and yummy homemade cakes, or you can take your own picnic.

During the school holidays you can phone up and book a lesson. This is even better as the centre is quieter and the children get a longer ride.

EST also have centres in Devon, Birmingham and one due to open soon in Manchester.

Dialling a number starting 0870 should ring alarm bells as well as the phone. While named NationalCall rate numbers, they’re more akin to premium rates, costing up to 8p/min, massively more than a normal call.

These numbers are everywhere; household names like Comet, Vodafone and Barclaycard all issue them. Worse still, it often means, call to complain and the company you’re calling will profit from the call.

Many people don’t realise that there are many phone providers offering cheaper calls to standard telephone numbers (those beginning with 01 or 02), which don’t apply to 0844, 0845, 0870 or 0871 telephone numbers.

If you have an ‘inclusive landline calls’ phone package, then it is very rare that 0844, 0845, 0870, or 0871 numbers are are included in your ‘free minutes’ allocation, unlike normal numbers. Many mobile phone packages also exclude freephone 0800 and 0808 numbers for your bundled minutes.

On BT’s basic package, calling a landline during the day costs 3p/min (local and national rates no longer exist), yet calling 0870 numbers is 7.1p/min. With Toucan Telecom a normal 20 minute evening call costs 3p, but it’s 78p to an 0870 number.

Don’t confuse Lo-Call with local; numbers starting 0845 aren’t cheap and, again, aren’t included in the ‘free calls’. For someone calling from a BT line in the evening, you’d pay 30p for a half hour 0845 call compared to 5.5p for a normal call.

Non-geographic numbers are where the call cost doesn’t relate to where you’re calling. With numbers starting 0844 the price is fixed, at between 1p and 5p/minute; with 0871s it’s up to 10p/minute. They’re often used for special services where providers deliberately get a cut of the call revenue.

Many companies advertise a separate number that can be used when calling from abroad - This usually begins in the format +44 - There is nothing to stop you using this number from the UK (as it is a normal rate telephone call), and will be included in any inclusive minutes provided by your landline or mobile phone provider. Many others will give you a standard number if you ask.

SAYNOTO0870 site is all about listing these numbers, saving you money, without having to pay additional charges. To get started and find a particular number, click on the ‘Search to find an alternative number’ link at the top of the page from the link above.

Welcome to the ASDFriendly Shop.

The links on right-hand side will take you to places where your purchases will contribute a donation to the running costs of ASDfriendly.

Amazon purchases don’t cost you any extra, but for everything you buy, Amazon etc gives us a precentage of the total cost. In the mugs, thongs and things link, £1-£2 per product comes direct to ASDfriendly. Every penny welcome.

Please contact an Admin if you would like to make a direct donation.

Take advantage of our featured items!

The Baby Shakespeare DVD range (also available on video) are US made ‘edutainment’ (horrible word, sorry) pieces that are designed to introduce kids to specific concepts. For example, the Baby Mozart DVD introduces music, Baby Shakespeare introduces language and Baby Newton introduces shapes and colours.

Don’t be put off by the ‘Baby’ bit in the title- these are good DVD’s. We got them long before we knew M was Autistic and she loved them as a baby. Now she’s that little bit older, they act almost as big flash-cards like the ones Speech Therapists use- this has helped M enormously.

You can get the DVD’s from Amazon:

Autistic heaven!

A huge site full of all types of train, from massive steam engines to a mock up of the Japanese Bullet Train. Every now and then you can get to see the Hogwarts Express too. In the summer, the Flying Scotsman pulls the Scarborough Express for a day at the coast.

Staff are used to youngsters with ASD. If you let them know in advance (or at least on arrival) they can organise queue jumping, and will be very tolerant of the fact that your child may be incapable of getting off the miniature steam train!

Lots of buttons to press and interactive activities, along with the balcony where you can watch real trains coming and going from York Station. It’s difficult to leave…

One word of advice: if you have a disabled parking badge, remember to bring it - parking costs £5 otherwise.

Definitely recommended.

Address: National Railway Museum, Leeman Road, York, YO26 4XJ, UK
telephone: 08704 214001
fax: 01904 611112
email: nrm@nrm.org.uk

The Toby Henderson Trust, Whitehouse Farm, Northumberland.

One of the things that this centre provides is a hair cutting service once every six weeks so we thought wed give it a whirl as the last hair cut took 5 hours while my son was asleep in bed!

We arrived not knowing what to expect and son number 1 was instantly awed by the huge Sully from Monsters Inc in the entrance way. Up some stairs and into the very warm and welcoming main room. My son felt instantly at home and within seconds had located a large Thomas the Tank engine who he proceeded to push around the floor.

The appointments are given so that each child is there in their own and there is absolutely no pressure. Questions are asked about the childs favourite things and then they are talked to and given exciting things like a whole box of engines and a video to act as distractions from the haircut ordeal.

To a large extent it worked pretty well and the hair dresser was a star. She was kicked part way through, but persevered and was very careful to cause as little upset as physically possible.

The result was a smart hair cut a happy boy rewarded with a certificate and an Ikea dinosaur and all for £3.50!

I cannot recommend these people enough for a non-judgemental and supportive environment. Absolutely fantastic!!

Bobby Shafto’s, Spennymoor, Durham.

Bobby Shafto’s is a playbarn at the Whitworth Hall Hotel just outside Durham. One of the smallest playbarns in the area, but that makes it all the better for our little boy.

The compact size of the place makes it much easier to watch the children, and considerably less intimidating to the little one as it is quieter and less crowded. The play value is just as good: it is just that the environment is less overwhelming.

At the edge of the play area is a soft drink and snack bar, and there is also a balcony area with tables & chairs overlooking the play area - although that is usually reserved for parties. If you sit by the snack bar, the children have to come past you to get out, so you know they are in there and safe! The snack bar does present some problems: we haven’t yet been able to explain to our little one that he cannot have a bag of crisps in the play area, but we’re working on it.

Best of all, if something happens, you can hear the children cry. You can’t say the same in larger play barns.

At John Lewis, you need to make an appointment if you want to buy shoes for children on a Saturday. We asked for the latest possible appointment, and got 5:30pm when the shop was half empty.

I warned the staff in advance that there were likely to be problems, and the person on the phone immediately told me who would be fitting the shoes for my son. This member of staff was “briefed” discretely before we arrived - there was no waiting, we were given loads of space in a corner, all the time we needed, and she was very patient and understanding, despite being kicked ferociously and screamed at. She tried loads of different things to make our little boy feel at ease (none of them worked, but what the hey! She tried!).

They couldn’t have tried harder. They even suggested that we took the shoes home to let him try them on when he was happier. (They promised us a refund if they didn’t fit or if he refused to wear them.).

All in all - thoroughly recommended.

Busy Bees Nursery, Newton Hall, Durham.

Our little boy started at Busy Bees when he was six months old, and they have provided nothing but the very best for him, three days a week.

First the suspicion, and then the diagnosis of ASD prompted them to adjust their approach to our son, helping him with his routines and working very hard indeed to help him get the most out of his time in nursery. They have also invited people into the nursery to train their staff to deal with the difficulties specific to ASD. Staff have attended case conferences in their own time to help the paediatricians and child psychologists, written reports for the educational psychologist, and attended training courses at the weekend just to make our son’s time in nursery easier and happier.

All this has made a major contribution to our son’s progress. It costs us more than our house, but it’s worth it!

Pizza Express is the big, posh old building next to the Lendal Bridge in York. Pizza Hut was heaving, so we went there instead.

Beautiful buildings, lovely food (especially the tagliatelle) but there were problems. First, nappy changing is only in the ladies’ loo: our son is used to daddy changing his nappy when we are out. Plus the facilities are designed for tiny babies, not big ‘uns (2-3 years.)

Next, we had long waits for the good food, and nothing to distract the children with except whatever we had brought ourselves. Even the drinks took a long time. By the time the food had arrived, so had the tantrum.

There was very little space between the tables, so every time our son got out of his seat he was in someone’s way - with waiters passing all the time, carrying hot food.

Not really practical, which is a shame because the food is much better than at Pizza Hut. But Pizza Hut is so much better for all kids.

The Spurriergate Centre used to be St Michael’s Church, but has now been decommissioned (is that what you call a church that is converted to secular use?)

It’s in the centre of York - they even have a map!

And when the church does family eateries, they teach the world a lesson!

The sanctuary is now a play area for toddlers (no, I can’t think for a better use for it either,) the rest of the church is given over to roomy seating for families to eat, and they have gone the whole distance in providing everything that a hungry family needs: high chairs, bibs, plastic bowls and cutlery for tots and Little Nutters who like to throw their plates when they have finished, and a Fair Trade shop in the corner.

When MissMac and I are alone and hungry in York, I admit that we go to Betty’s. When we have the children, they insist on the Spurriergate Centre. This is, without any doubt whatsoever, an everybody-friendly place to eat.

The Spurriergate Centre

St Michael’s Church

Spurriergate

York

YO1 9QR

tel:01904 629393
fax 01904 629383

A Statement of Special Educational Needs is the key to extra help in schools.

There are lots of different types of autism, and different children with these different types respond to different treatments.

But one thing that helps them all is what our paediatrician calls “education therapy.”

For Little Nutter, that usually means one-on-one interaction with a teacher trained in the Hanen Programme, helping him with verbal instructions and requests, social interaction, access to educational activities, and the normal, everyday routines of life in school. Other children respond better to the PECS system (Picture exchange Communication System) and some make progress with deaf-sign. The important thing is finding out what works in each particular case, and making sure that it is delivered consistently.

As we discovered with Little Nutter, progress is painfully slow when assistance is given, and regression is swift when it is withdrawn.

Sadly, Local Education Authorities are not forthcoming when it comes to paying for this assistance. Whatever trouble you may have had in finding a diagnosis and gaining access to health services, the LEA will add more heartache to your life.

So I’ll start with my most negative point: expect resistance at every stage.

Stage One: Requesting Statutory Assessment of Special Educational Needs

Statutory Assessment takes place under Section 323 of the Education Act 1996 – but whether or not it actually happens is entirely at the discretion of your Local Education Authority.

You are entitled to make a request to what is often called an “Inclusion Panel” that your child is given a Statutory Assessment, but (as the law stands at the moment) after that, the matter is entirely out of your control. You are entitled to submit information for consideration by the Inclusion panel but, as in our experience, you may later discover that your submissions were not even read. At the moment, all you can do is wait.

However, it is helpful if, along with your request, you arrange for further information to be submitted to the LEA. Ask for the following:

• A statement from the paediatrician who made the diagnosis
• Confirmation of disability classification (that is the level of Disability Living Allowance your child is entitled to)
• A report from a clinical psychologist (ask either the paediatrician or your Special Health Visitor)
• A report from any day care professionals who have regular contact with your child
• If your child is already at school, a report from the school is essential. Ask for details of what is required for your child to participate in educational activities.

Keep copies and record the date that you sent this in. If you are lucky, all it will do is clutter up your house. If not, you will need it when you appeal against their decision.

It is also worth formally requesting that you are invited to the Inclusion Panel meeting. If they do invite you, please let us know here at ASDFriendly – it will help others in their claims if we know which LEAs are being reasonable!

And if the Inclusion Panel decides to proceed with a Statutory Assessment, then you don’t need to read the next bit. (And you have no idea how jealous I am!)

Stage Two: Your Appeal

When you are informed of the Inclusion Panel’s decision not to proceed to Assessment, they are required to notify you of your right to appeal, and how to do it.

Appeals are normally handled by SENDIST, the Special Educational Needs and Disability Tribunal:

Mowden Hall,
Staindrop Road,
Darlington,
DL3 9BG

SEN Helpline 01325 392555
Disability Helpline 020 7925 5750
http://www.sendist.gov.uk

They require a few basic pieces of information from you (including a copy of the Inclusion Panel’s decision) and they will send you a pack detailing everything that you need to do from here.

Don’t panic!

First, the National Autistic Society has an Advocacy Helpline for people in exactly this position: 0800 358 8667

They are wonderful! Leave your telephone number and name and a time that is convenient to receive phone calls, and wait for them to get back to you. They will help you to prepare your evidence for the Tribunal (they will even look through it for you if you send them a copy) and talk you through the process step by step.

And don’t forget our message boards at ASDf some of us have gone through this process, and will answer any questions as well as we can.

The basis of our appeal was that the Inclusion Panel did not consider all of the information they were given – and we could prove it. We knew from the start that as long as we kept a level head and followed the advice of the professionals at the NAS, we would win our case.

And I cannot overstate that point: always follow the advice you are given by the NAS! They do this all the time, and they know when you are heading for a pitfall, and will warn you.

Stage Three: Mediation

Our LEA realised very quickly that we had a strong case, so they employed a mediation service to try and find a solution before we reached Appeal. In our case it was FANE: http://www.fane-partnership.org.uk

FANE are unbelievably good. They have a team of very professional people who are always ready and willing to provide a sympathetic ear and help you to prepare your case. I don’t know the individuals who helped us, but they gave me the impression that they did understand the anguish parents go through in this process. After all, the LEA does this for a job, whilst we go through it on top of our jobs, as well as caring for a child with ASD, when we really should be relaxing and unwinding.

FANE encouraged us to keep on talking to the LEA, and again, this is SERIOUSLY good advice. I cannot overstate this point: if you refuse to talk with the LEA, it will undermine your case at the tribunal.

The plan, with FANE, was for us to meet with mediators and the people in charge of SEN Assessment at a local hotel. In practice, this costs the LEA money and the people in charge have to spend a day in a hotel and not in their office. Talking to the LEA in the week running up to the mediation meeting was the most productive thing we ever did: at this point, we reached an agreement and the LEA began the procedure for Statutory Assessment.

Stage Four: The Assessment

Give your consent.

If, like us, you have been through stages 3 and 4, then insist that the evidence you have collected and submitted for Appeal is used rather than waiting for the LEA to send out requests to all the agencies involved, and then wait for them to reply – this could potentially reduce the procedure by up to ten weeks.

The evidence considered is usually from the educational psychologist, a representative of any educational institution that your child attends, the paediatrician or other medical officer (the LEA may have a school doctor they wish to use, rather than your usual paediatrician) and any other people from the Health Authority or Social Services who have been helping you.

Again, you are not entitled to be present when the decision is made. However, if, like us, you feel that you want to be certain that all the relevant information is properly considered, you can request an invitation. Again, not all authorities will grant you permission for this, so if you do get invited, let us know. (We haven’t had a reply yet!)

You should also receive some form of documentation that allows you to tell the panel about your child. There are no restrictions or requirements for how you use this piece of paper, so use it well in exactly the way you wish!

Here’s what we did with it:

• We explained in simple terms what Little Nutter can and cannot do
• We explained what he needs to make progress
• We referred to the regression that occurred when his Special Needs support was withdrawn from his Day Care Nursery
• We described the security measures that are needed in his home, both for his own safety and the safety of the rest of the family
• We concluded with a simple statement of what we hoped he would receive to assist him in his education.

As of the day I posted this the Panel hasn’t yet met to consider all of the evidence in Little Nutter’s case, so there is no draft Statement yet. Darling Wifey and I are undecided as to whether Little Nutter needs a special school or can cope in a mainstream school, although we are inclined towards thinking that a special school might be best at the moment.

Whether or not you are invited to the meeting that considers your child’s Statement, one of two things will happen: either a decision will be made that a Statement is not necessary (in which case you may return to Stage 2, and appeal – there is no limit to the number of appeals you may make) or a draft Statement is sent to you.

You only have 15 days to respond to this before it is invalidated, so you need to respond promptly.

If you are happy with the proposals, sign it and return it. This is a contract between you and the LEA, and once you have signed it they are required by law to provide the assistance detailed in the Statement. If you are not happy with the proposals, you need to speak to the “Named Officer” you have been assigned as soon as possible about your concerns.

Once you have reached this point a return to mediation or appeal would be a step backwards (unless the draft Statement ignores a glaringly obvious fact, like your child has ASD, and the LEA refuses to correct it.) The fact that the LEA are drafting a Statement shows that they recognise that your child has needs that require assistance over and above that which a normal school can provide. From this point, they have acknowledged that your child will cost them money, and the Statement is a legally binding promise that they will pay that money.

This means that any requests you make have to be justified as essential for your child’s education. What you request be included in the Statement must be reasonable from everybody’s point of view.

And always remember MissMac’s Golden Rule: “If in doubt, describe the problem and ask how they would solve it.”

Good luck – and don’t hesitate to ask on the ASDFriendly message boards if you want help!

Lets face it- sometimes when communicating (or trying to) with official bodies on behalf of our ASD kids it becomes clear that some of them don’t really want to communicate as much as we do. In fact, getting information out of a few organisations we can all think of (Who said ‘LEA’?) is a mind numbingly difficult task.

In these techno-times we live in, email can become your best friend. Not only does it provide an instant record of communication, detailing exactly what was said, by whom and exactly when, it also gives you a mean to easily move up and down the communication ladder at will.

Lets say we’re having trouble getting our ASD child assessed for Statementing by our LEA. The EP’s been and gone and we now want to actually talk to someone (Ha!). At some stage you will receive a letter from the LEA with a case workers name on it- whether this case worker provides it or not, you now have their email address. How?

Well, all governmental bodies follow a pattern. the TLD (Top Level Domain) is .gov.uk the domain is almost certainly your county name (e.g. for me the domain is ’staffordshire’) or some common abbreviation of it. Thus we have the domain/tld amalgamation of ’staffordshire.gov.uk’. Excellent. Now, how about the actual person to send it to? Well, lets say our case workers name is Fred Bloggs. All person names follow a strict pattern also- this will vary from area to area though. The most common forms are:

• fred.bloggs
• f.bloggs
• fbloggs
• bloggsf
• bloggs.f

What I suggest you do at this point is create 5 seperate emails using each possibility so:

• 1: fred.bloggs@staffordshire.gov.uk
• 2: f.bloggs@staffordshire.gov.uk
• 3: fbloggs@staffordshire.gov.uk
• 4: bloggsf@staffordshire.gov.uk
• 5: bloggs.f@staffordshire.gov.uk

Its almost certain that one of these will work. You will know which one works because all the others will get bounced back tom your inbox with an error message. If all 5 get bounced back we need to get a bit creative. What I suggest you do in this case is use the domain/tld combination on the areas website and hunt for contact details in order to see the pattern. e.g. type http://www.staffordshire.gov.uk (substituting your own area name of course) into your browser and look for a ‘contact’ page. Once found, make a note of the pattern that people are named by and use that for your email address. This one should definitely not get bounced back. For example, I found on this page http://www.staffordshire.gov.uk/live/welcome.asp?id=380 that staffordshire use firstname.lastname as their pattern.

I found this by looking in the box at the bottom of the page where they’ve helpfully listed peoples names as the link text. If they haven’t listed names then hover your mouse over the text and in your browsers status bar (bottom left corner) will appear the raw mailto link including the naming pattern.

So, great stuff- we now have our case workers email address. The good bit is the fact that now we have the pattern, all we really need to get everyone’s email address in the entire dept is their name.

So, couple this with the fact that most LEA letters come with the name of the dept head emblazoned across it somewhere and lo and behold- you’ve got their email address too- now you can cut straight to the horses mouth and make a total pest of yourself to the big boss.

Welcome to the ASD Friendly Guides section.

This section contains a series of articles on common problems faced by parents of kids within the ASD spectrum.

Please select an article by choosing it from the menu on the right of the page.

If you would like to submit an article for the Guides section, please follow the Contact Us link at the top of this page.

As we all know life with ASD can sometimes get a bit boring and we are always looking for new things to do, see and go to.

Our review section provides excellent information and reasources on places to eat out (may be very helpful to those of you who follow the GF/CF diet), Interesting and stimulating attractions and points of interest as well as reviews of DVDs (both for the Thomas obsessed kids out there and those with an older and wider field of interest.)

It’s always nice to read how disability aware a place is before you visit, if you are entitled to a discount and what special facilities they have. And for those of us who find it hard to get there’s always those DVD reviews which might be handy to see if it is suitable for your family.

Don’t forget we also have reviews for places where adults can go and let of steam!

As we all know life with ASD can sometimes get a bit boring and we are always looking for new things to do, see and go to.

Our review section provides excellent information and reasources on places to eat out (may be very helpful to those of you who follow the GF/CF diet), Interesting and stimulating attractions and points of interest as well as reviews of DVDs (both for the Thomas obsessed kids out there and those with an older and wider field of interest.)

Its always nice to read how disability aware a place is before you visit, if you are entitled to a discount and what special facilities they have. And for those of us who find it hard to get there’s always those DVD reviews which might be handy to see if it is suitable for your family.

Don’t forget we also have reviews for places where adults can go and let of steam!

As we all know life with ASD can sometimes get a bit boring and we are always looking for new things to do, see and go to.

Our review section provides excellent information and reasources on places to eat out (may be very helpful to those of you who follow the GF/CF diet), Interesting and stimulating attractions and points of interest as well as reviews of DVDs (both for the Thomas obsessed kids out there and those with an older and wider field of interest.)

Its always nice to read how disability aware a place is before you visit, if you are entitled to a discount and what special facilities they have. And for those of us who find it hard to get there’s always those DVD reviews which might be handy to see if it is suitable for your family.

Don’t forget we also have reviews for places where adults can go and let of steam!

Welcome to the ASD Friendly Review section.

From the menu on the right, please select the category of review that you are interested in reading about. For example, if you are looking for a cinema review, you would look in ‘places’.

Once you have clicked the appropriate link from the menu on the right, the menu will expand. This expanded menu will contain links to all the reviews in the category you selected.

It is possible, indeed you are encouraged to leave comments about the reviews you have read. You may agree or disagree with the review given. Please feel free to express your views as you see fit, but bear in mind that swearing, racist, homophobic, sexist and comments based purely on disability will be removed.

Comments from individual users will be placed underneath the review. You can submit your comments in a form at the bottom of each review.

If you would like to submit a review, please use the Contact Us page to provide us with details.

The contents of the review section represent the opinions of the individual contributors and not necessarily those of ASDFriendly.org

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Red Questions are the main questions Blue Questions are the sub Questions
Q~ About the Child

A~ Fill in this section ! child ref No you will find on the letter you received with this form.

Tick all boxes ! except blind/partially sighted…..has hearing problems…….has physical disabilities unless these apply.

Q~ Walking Outdoors
A~ Tick Yes ! In the box write something like this ………..My child tires very quickly & is clumsy therefore he trips & falls often. We use a Major Stroller to contain & restrain him/her as they are prone to running away & also find crowds distressing which cause him/her to be Hyper & panic. My child is also prone to attacking anyone who gets too close. The buggy helps in restraining & controlling him/her it also helps him/her feel safer & secure.

Q~ How many days a week ?
A~ Every day

Q~ How far can the child walk
A~ 50 Metre’s

Q~How long does it take them to walk this far ?
A~15-20 minutes

Q~If the child needs someone with them when they are outdoors ?
A~Tick Yes ! In the box write something like this:- My son/daughter needs someone with them at all times outdoors as they are Severely Mentally Impaired , he/she has behavioural problems & severe learning difficulties , he/she has no sense of fear & will therefore bolt & run into the road , putting himself/herself in danger & endangering other people , he/she needs constant encourage to stay calm , needs almost constant soothing . He/she would wander off & get lost & would then be unable to ask for help , he/she would walk away with any person who approached them . He/she tends to violence when upset & would attack anyone coming too close. He/she is unable to ask/find a toilet & use it unaided & needs prompting & encouraging to use it , he/she would be unable to to procure food/drink & unable to feed/drink them selves & he/she needs promting & encouraging to feed/drink . He / she is incontinent & still in nappies .(if this applies).

Q~Someone to keep an eye on the child
A~Tick yes !Write something like this for during the day;- My son/daughter needs someone with them at all times as they are Severely Mentally Impaired , he/she has behavioural problems & severe learning difficulties , he/she has no sense of fear , & does not recognise danger signs , putting himself/herself in danger & endangering other people , he/she needs constant encourage to stay calm , needs almost constant soothing . He/she tends to violence when upset & often attack . He/she is unable to ask for a toilet & use it unaided & needs prompting & encouraging to use it , he/she needs promting & encouraging to feed/drink . He/she is incontinent & still in nappies .(if this applies). He/she is unable to take medication unaided .

Q~How Many Days A Week ?
A~7 days a week

Q~How much of the day do they need some with them ?
A~Work out the time the child normally gets up in the mornings & the time it normally goes to bed in the evenings ! the answer to the Q is the hours in between .

Q~ Roughly how long do they need someone with them each time during the day ?
A~15minutes-2hours

Q~Why the child needs someone with them during the night ?
A~Write something like this:- My son/daughter is incontinent & wets the bed every night , he/she soils during the night & requires changing , including the bedding ! he/she will require washing if she/he soils . He/she becomes very upset at needing changing & having wet/soiled & it is difficult to change him/her taking a great deal of coaxing & calming ! It is then difficult to re-dress him/her again require lots of coaxing & calming . It then takes a long time to settle him/her back down for the rest of the night , may even require further sleeping medication .

Q~How many nights a week ?
A~ 7 days a week

Q~How much of the night does someone have to be awake ?
A~Minimum of 2hrs

Q~How long do they need someone awake with them each time ?
A~Minimum of 2 hours

Q~About your childs developement ?
A~Tick Yes ! write something like this :- He/she has difficulties cutting up food , speech is echolic , or non verbal (which ever applies) walking is tiring for him/her , He/she has an aversion to hot/cold food , He/she cannot eat normal food , He/she has an aversion to noise/hypersensitive hearing ! certain sounds alarm Him/her . He/she has temper tantrums.

Q~How many times a day does the child need help ?
A~15-30 times a day

Q~How long does it take each time ?
A~20minutes -2hrs

Q~Does the child have a delay in their developement of learning skills ?
A~Tick Yes ! write something like this :- My son/daughter lives in a world of his/her own , he/she is often not even aware of people around him/her . He/she cannot follow simple instructions , he/she has to be coaxed/encouraged/assisted to do even simple things , at times he/she will simple refuse to follow instructions & has to be coaxed/encouraged/assisted to follow the instructions. Certain sounds especially loud sounds scare & upset him/her & he/she will require calming & soothing .

Q~How many times a day does the child need help ?
A~15-30 times a day

Q~how long does it take each time ?
A~20 minutes to 2 hours

Q~ Does the child have a delay in their development of social skills ?
A~Tick Yes Write something like this . My son/daughter has a communication problem , there is little or no eye contact , he/she lives in a world of their own , only plays on their terms , plays on their own in a crowd , does not approach other children/adults to play .

Q~ Roughly how many times a day does the child need help ?
A~ 20-30 times a day

Q~ Roughly how long does it take each time ?
A~1-20 minutes

Q~Does someone need to help the child develop through play ?
A~Yes write something like this . Play is repetitive , we have to monitor the toys he/she plays with & rotate them , he/she does not play appropiately , has little or no imagination , left unattended he/she would simply line up toys . Needs encouragement to take turns ,

Q~Roughly how many times a day does the child need help ?
A~5-10 times a day

Q~Roughly how long does it take each time ?
A~5-30minutes

Q~Waking , getting up & going to bed ?
A~Tick Yes !

Q~Does some have to wake the child or encourage them to get up or go to bed ?
A~Tick Yes ! write something like this :- My son/daughter sleeps very badly & it is a struggle every night to get them into bed & to keep them there. My son/daughter will refuse to go to bed & falls asleep eventually where ever they happen to be ! & then he/she will need to be carried to bed . My son/daughter will eventually go to bed but will not remain there & has to be encouraged & put back into bed numerous times until eventually he/she falls asleep .

Q~How many days a week does the child need this help ?
A~7 days a week

Q~How many times a day does the child need this help ?
A~once a day (twice if a younger child who needs a mid-day nap)

Q~How long does it take the child to get out or into bed ?
A~10mins-3hours

Q~Washing & bathing ?
A~Tick Yes !

Q~ does someone have to tell or encourage the child to wash or bath or shower ?
A~Tick Yes ! write something like this :- My son/daughter will not bath or wash without encouragement & assistance , sometimes even not then ! At times I have to bodily lift him/her into the bath/shower , he/she needs to be encouraged to actually wash , or I have to wash him/her myself . My son/daughter hates having his/her hair washed & I have to do it myself . My son/daughter has very sensitive gums & refuses to clean his/her teeth & needs encouragement & assistance to perform this task. My son/daughter has no sense of fear so has to be watched whilst in the bath/shower as he/she is likely to empty bottles etc & to play with the taps , possibly causing himself/herself an injury .

Q~How many times a day does the child need this help ?
A~twice a day

Q~How many times a day does the child need help with washing or bath/shower ?
A~ twice

Q~How long does it take to have a bath or shower ?
A~45minutes to 90minutes

Q~Getting dressed or undressed ?
A~Tick Yes !

Q~Does someone have to encourage the child to get dressed/undressed ?
A~Tick Yes ! write something like this :- My son/daughter is unable to dress/undress him/herself , he/she has no idea what clothes are appropriate , & his cor-ordination makes it difficult for him/her to cope with things like briefs & socks . He/she hates getting dressed/undressed & it is a struggle to do it.

Q~how many times a day does the child need this help?
A~7 days a week

Q~How many times a day does the child need this help ?
A~3-6 times a day

Q~How long does it take the child to get dressed/undressed each time ?
A~10minutes - 45minutes

Q~Help with toilet needs ?
A~Tick Yes !

Q~Does someone have to encourage the child to see to their toilet needs ?
A~Tick Yes !

Q~during the day ?
A~write something like this :- My son/daughter needs constant encouragement to see to his/her toilet needs & also needs assistance/encouragement with clothing . My son/daughter wears Nappies/pull ups .

Q~During the night ?
A~write something like this :- My son/daughter wears nappies/pull ups at night but needs changing during the night due to wetting/soiling . My son/daughter has to be lifted during the night & encouraged to use the toilet .

Q~How many days a week ?
A~7 days a week

Q~How many times does the child need this help ?
A~during the day ! 6-8 times……..during the night ! 1-3 times

Q~How long does it take each time ?
A~10-20 minutes

Q~Communicating with other people
A~ YES write something like this . My son/daughter cannot understand or follow simple instructions . These may need to be explained numerous times what is required of him/she , we use PEC cards to show him/her what he/she needs to be doing . We use Makaton to gain his/her attention . At times we have to touch him/her or turn his/her head toward us to gain his/her attention .

Q~How many times a day do they need someone to help them understand other people ?
A~ 20-30times

Q~Roughly how long does it take each time ?
A~5-15mins each time

Q~Does the child need help being understood by other people ?
A~Yes write something like this . My son/daughter has a speech & language disorder , he/she has finds communicating very difficult , he/she has no speech & uses PECS or Makaton , noises or gestures . Speech is often Echolic & Inappropriate. Which ever applies !!!!

Q~How many times a day do they need help to make themselves understood by other people ?
A~10-20 times

Q~Roughly how long does it take each time ?
A~5-15 minutes each time

Q~Is the child unwilling to communicate with other people ?
A~Yes write something like this . My son/daughter has a communication disorder & lives in a world of their own , he/she is often distressed , he/she is often withdrawn or very difficult to handle or hyper .

Q~Tellus about the encouragement the child needs to help them communicate with other people
A~write something like this . He/she needs to be encouraged to look at people when speaking or being spoken to . He/she will often not listen at all & the more you try to communicate with him/her the more distressed he/she becomes . He/she uses Makaton or/and PECS and/or noises or gestures to communicate . He/she can speak but speech is echolic & inappropriate .
Q~How many times a day do they need help to communicate with other people ?
A~5-20 times a day

Q~ Roughly how long does it takes each time ?
A~5-15 minutes each time

Q~Eating and drinking

Q~Does the child have difficulties eating or drinking ?
A~Yes

Q~Does the child need to be encouraged to eat or drink ?
A~Yes

Q~Tell us about the help or encouragement the child needs during the day
A~write something like this . Cannot cope with cutlery , uses fingers , cannot cut up food , will not eat food hot/cold . Will only eat certain foods . Will only eat soft food like baby food . Is a very messy eater often has to be fed .Will not remain at the table constantly runs off . Food cannot touch each other on the plate .Uses special children’s cutlery/ High chair / restraints . Will only eat from certain plate , drink for certain cup .whichever applies !

Q~Tell us about the help or encouragement the child needs during the night
A~If he/she wakes during the night , he/she may need feeding he/she will need to be encouraged to eat or drink

Q~How many days/nights does the child need this help ?
A~7 days/nights a week

Q~How many times a day/night does the child need this help ?
A~ Day = 4-7 times a day Night = 1-3 times a night

Q~How long does it take each time ?
A~5-20 minutes each time

Q~Help with medication ?
A~Tick Yes ! For during the day write something like this :- My son/daughter will not co-operate with taking any medication at all , it is always a terrible struggle , sometimes we do not even succeed in getting hi/her to take it . He/she cannot manage his/her inhaler without coaxing & assistance . He /she will not permit creams / plasters to be applied either .

A~For at night write something like this :- My son/daughter needs to take further sleep inducing medication , which is again a terrible struggle .

Q~How many times a week/night do they need this help ?
A~7 days a week —-7 nights a week

Q~How many times a day/night do they need this help ?
A~4 times a day ——-once a night

Q~How long does it take each time ?
A~10-45 mins

Q~Help with Therapy ?
A~Tick Yes ! for during the day write something like this :- My son/daughter needs help with therapy , he/she needs coaxing / encouraging /soothing & directing during speech Therapy & play therapy .

A~For the night write NONE

Q~How many days a week/nights a week does the child need this help ?
A~2/3 days a week for during the day——–None at night

Q~How many times a day/night does the child need this help?
A~1or 2 a day——-None at night

Q~How long does it take each time?
A~30-60 minutes during the day——–None at night.

Q~Help with medical equipment ?
A~tick No ! unless this applies

Q~Blackouts , fits , seizures or something like this !
A~Tick No ! unless it applies ! if it does write exactly what happens before , after & during a fit .

Q~The child’s Mental Health
A~Tick Yes! Write something like this :- My son/daughter gets anxious & suffers panic attacks & becomes Hyper in crowded places & cannot cope at all . He/she gets very frustrated when unable to complete a task . During these outburst he/she becomes violent towards others & is prone to attacking . he/she also becomes verbally aggressive & will throw objects or try to destroy them . The smallest change to his/her routine can tigger this behaviour , even being told “no” .

Q~How often does this happen & how long does the child need help ?
A~write something like this :- This outburst , panic attacks etc. happen on a daily basis , & numerous times in one day often with in minutes of each other . 10-20 such outbursts a day , 10-45 mins to calm him/her down each time .

Q~ Movement & co-ordination
A~Tick No ! unless it applies

Q~Moving about in doors
A~Tick Yes !

Q~Does someone have to tell or encourage the child to move about in doors ?
A~Tick YES! write something like this :- My son/daughter often refuses to leave the house & if coaxing fails he/she has to bodily lifted into his/her stroller , we use stair gates around the house to contain him/her to rooms where it is safe for him/her to be . He/she frequently requires bodily lifting into the bath/shower .

Q~When the child is in bed at night
A~Tick YES! write something like this :- My son/daughter has nightmares & disturbed sleep he/she often needs reassuring/comforting during the night . he/she is a very restless sleeper & often throws the covers off & cannot retrieve them , he/she frequently wets the bed which then requires resheeting , he/she will not remain in bed once awake & has to be given sleep inducing medication to settle them back to sleep , the medication takes an hour to work , during that time I will have to put him/her back to bed several times .

Q~How many nights does the child need help ?
A~7 nights a week

Q~How many times a night does the child need help ?
A~1-3 times a night

Q~How long each time ?
A~10-120 mins

Q~Help the child needs when they go out during the day or in the evening

Daytime/Evening

1 Swimming :-Taking him/her there , undressing , supervising , drying , redressing , toiletting , refreshments , communicating , taking him/her home again . 2 days a week——-once a day 2 hours

2 Dr’s/Hospital; Appointments :- Taking him/her there , refreshments , toileting , supervising , coaxing , soothing , communicating , taking him/her home. once /twice a week 1-2 hours

3 Hairdressers:-Taking him/her there , refreshments , toiletting , supervising , coaxing , soothing , communicating , taking him/her home. once a month 60-90 minutes .

At Home

1 Have family/friends to visit :-Refreshments , toileting , supervising , coaxing , soothing , communicating. 2 days a week——-2 hours each day

2 Play outside:-Refreshments , toileting , supervising , coaxing , soothing , communicating. 7 days a week———1 hour each time .

3 Painting/colouring/working on the computor:-Refreshments , toiletting , supervising , coaxing , soothing , communicating , instructing . 5 days a week———1hour each time.

Q Anything else about the way the child is affected by their illnesses or disabilities
Here you can write about his/her schooling , problems at school , about their Educational statement . Special Nursery school , special play groups , ARC units , etc anything else you feel the need to say !

Q~ About the child’s condition
A~write the approx date you first noticed your child had probelms .

Q~Do you think the child will still have the problems in 6 months ?
A~Tick YES ! then write beside it ! FOR LIFE !

DECLARATION
Sign & date

Ask someone to fill this section in ! Your Health Visitor is usually a good person to do this.

Well - a lot has happened since I last passed this way …

We have a statement for my son for secondary school that finally matches most of his needs - it’s been a battle and required copied emails to various peeps high up in the echelons of the local council but we have finally got exactly what we wanted

My son has achieved 3 level 5’s in his SATs - Maths and science were never really in doubt but the English is a real achievement for him.

Next hurdle - starting secondary in September - watch this space