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2.1 How do I get a Statement?/Do I get a Statement?
2.2 What specialist help is available to my pre-schooler?
Social Skills Group.2.3 What specialist help is available for my primary school child?
Earlybird.
Speech and Language Therapy.
Early Intervention Panel/specialist pre-school nursery places.
Home programmes
Mainstream nurseries
Haringey funded contact numbers for pre-school year education problems:
Primary Provision in Haringey2.4 What specialist help is available for my secondary age child?
Special schools for primary age children, most frequently attended by Haringey children
Mainstream primary school with varying levels of support
Home programmes
New Social Skills group
Haringey funded contact numbers for primary age education problems
Introduction
Special schools
Inclusive secondary provision
Haringey funded contact numbers for secondary age education problems
Unless your child is extremely able or high-functioning and likely to get through mainstream primary and secondary school with almost no extra help, then the answer for most parents will be yes, and as soon as possible. A Statement of Special Educational Needs is a document outlining your child's needs and areas of difficulty, and detailing the provision such as speech and language therapy and other support in school that must be given. The statement is compiled by the LEA's SEN dept (Local Educational Authority's Special Educational Needs Department) and takes into account the reports written by educational psychologists, speech and language therapists, clinicians, teachers, parents and any other involved professionals.
Obtaining one that you agree with and which will provide what you feel to be sufficient provision can be a tortuous process. The time from the first request for a Statement to the issuing of a Statement should in theory be no more than 6 months, but can be considerably longer in reality. All of this can be infuriating if you see the help your child could benefit from being withheld as a statement is required for the help to be given. Fortunately, much of the early intervention provision such as the Social Skills Group and the Earlybird scheme etc is no longer so dependent upon having a Statement, merely upon either being in the process of it, or having an autism diagnosis. But for children fast approaching or already of primary school age, there can be a feeling of much greater urgency.
Once issued, a Statement is reviewed annually and provision made be changed. In reality, very little changes on the Statement each year once it has been issued, so it is worth holding out for what you feel to be a Statement that will give decent provision for the next few foreseeable years.
The Statementing process is presently undergoing great changes nationally as the government tries to limit the number of Statements issued. There is pressure on LEAs and on the SENCOs within schools to restrict the number of statemented children and to dissuade parents from obtaining statements. Within schools, there is a system of grading children within the special needs range with four named stages. (This replaces the previous Stages 1 - 5). If the child is put at any of these stages, there is a duty for the school to inform and involve the parents. Roughly the stages are as follows:
A Statement for your child can be applied for by any SENCO, teacher, educational psychologist or other professional involved with your child to Haringey Education Services Special Educational Needs Dept. You may also self-refer if your child is not yet at any formal educational setting. However the SEN department will then ask an Educational Psychologist to assess and confirm that the child should be considered for statementing, so it may be quicker to start with the Educational Psychology service, as each referral to another department can take weeks, or even months.
If you are sure a Statement is necessary but the SENCO or Educational Psychologist is not prepared to apply for a Statement for your child and feels his/her needs can be met by the school's own Special Needs provision, you may want to pay for a second opinion from an independent specialist who does not need to worry about budgetary constraints etc. Alternatively, speak to the NAS Helpline, IPSEA, Autism London or try the Parent Partnership Scheme within Haringey (see Chapter 6 for helpline details). Private reports are expensive to obtain - expect to pay up to £500 for an independent educational psychologists assessment and report for instance. However if you are on benefits, your child may be able to get independent reports paid for to back you up at an educational tribunal- ask your local Citizens Advice Bureau for help.
If you wish to meet with the Special Educational Needs Dept face to face, or to better understand the assessment and statementing process, to ask questions and to set up individual appointments if necessary, call Anna Cheetham at the Parent Partnership Scheme (8800 4134) for help.
If you feel that any of the main reports made on your child are inaccurate, or understate the problems, you can ask for changes to be made to that report because understating problems could well result in lesser provision being offered. Every borough has a legal duty to make the hours and type of provision clear and to state who is to provide it. Many if not most boroughs try to avoid doing this however. Make sure your statement is unequivocal on provision. If you get nowhere with changes, you might consider splashing out and having an independent evaluation made by an out of borough expert to back up your point. Again if you are on benefits, you made be able to get these reports paid for. Ask at a local Citizens Advice Bureau.
If the LEA issues a final statement that you have been unable to agree with, you now have the option of taking them to ‘Tribunal', a form of court for deciding upon individual educational complaints. The process is explained in material that will be sent to you by the LEA. The NAS, Autism London, Resources for Autism, AFASIC, IPSEA and PACE helplines can all give advice (Chapter 6 ). Try speaking to the Parent Partnership Scheme to see if they can intervene to help produce a statement you are more satisfied with. Going to tribunal is sometimes inevitable, but both sides tend to do all they can to avoid it.
2.2 What specialist help is available to my pre-schooler? (Back to Top)
Run by Speech and Language Therapists at the CDC (Child Development Centre) at St Ann's Hospital for pre-school children with autism or a social-communication disorder, the social skills group run weekly for 6 - 8 weeks, once a term, working on language, play skills, turn taking etc. Some children may attend just one term, other may attend several terms consecutively. Tel: 8442 6338.
An NAS initiative, run in Haringey by the LEA. The first pilot scheme began in January 2001 with 6 families following a three month programme course run by Pat Markwardt, Schools Improvement Officer for Autism, known to most as Haringey's outreach worker for autism(working with autistic children in mainstream school settings), and an Educational Psychologist. The programme brings parents together for group daytime training sessions and also visits families in their own homes. Parents/carers are helped to understand their child's autistic spectrum disorder, develop the child's communication and help find ways to manage their behaviour. To qualify for the Earlybird scheme, children must have an autism diagnosis and NOT have a full-time nursery or Under 5's placement. (Earlybird can arrange some social services respite to allow parents to attend the course). For details contact Pat Markwardt at the PDC (Professional Development Centre). Tel: 8489 5084.
2.2.3 Speech and Language Therapy. (Back to Top)
Other than the Social Skills Group, some children may also receive one to one speech and language therapy in short bursts of weekly or monthly intervention. If you wish to self-refer to the Speech and Language Therapy service, write to: Sarah Russell, G1, St Ann's Hospital, St Ann's Road, London N15. Or tel/fax: 020 8442 6866. (Speech and Language Therapy also run a couple of language units for pre-school children which in the past a number of autistic children have attended: the Early Childhood Language Unit at Burgoyne Road Health Clinic, and the West Green Language Class. However the classes are designed for children with specific language delays and disorders but not for the social and communication disorders suffered by children with autism, and as such are not felt by the SLT to be the ideal placement if the autism diagnosis is clear.)
2.2.4 Early Intervention Panel/specialist pre-school nursery places.
Your child may be referred onto the Early Intervention Panel who allocate the specialist pre-school places according to need. Since March 2001, Haringey has a specialist pre-school autism unit attached to a mainstream playgroup at White Hart Lane Under 5's Centre. The unit known as The Gold Room offers up to 6 morning and 6 afternoon sessions only in mixed ability and mixed age groups for pre-schoolers. The White Hart Lane Under 5's Centre Social and Communication Unit (The Gold Room) is at 59, White Hart Lane, London N22. Tel: 8888 4398
Other places which are allocated by the Early Intervention Panel are at nurseries who have considerable experience with children with special needs, though are not particularly specialist facilities for autistic children. They will however all have access to educational psychologists and speech and language therapists. (in ordinary mainstream nurseries, you will need to self -refer to the educational psychology service for help or the nursery may do so themselves, and speech and language therapy is usually only available in the nursery if the child is statemented) The nurseries with reserved places for children with special needs include:
2.2.5 Home programmes (Back to Top)
There are now many children in the borough following home-based behavioural intervention programmes developed in the United States, also known as ABA or Applied Behavioural Analysis. There are a number of models with Lovaas, Verbal Behaviour and Options the better known. The majority of the children on home programmes are also combining mainstream school with their home programmes. The LEA funds a number of the home programmes - in the past this has often followed a considerable fight, with many cases coming close to Tribunal and with specialist lawyers involved.
There seems to be a seesawing attitude towards the benefits of ABA within the LEA nowadays so do not expect obtaining funding to be plain sailing. A home programme can cost around £20,000 a year to run and takes considerable dedication from the parent. Previously you also needed to prove you could run a programme effectively by having already done so for at least three months - making sure you video'd and made thorough notes about the child at the beginning of intervention and as the intervention progresses so that changes were unquestionably documented. This was a terrible disadvantage for parents unable to pay for 3 months unassisted, and possibly another 6 months or so before reimbursement trickled through. The LEA have in the past year shown some signs that this treatment is unfair and funded upfront for at least one family. However they seem to to and fro from month to month on their policy towards funding home programmes. Expect a fight and for a specialist lawyer like David Rubayne or Paul Conrathe to perhaps need to get involved (at considerable expense to you) along the way! (Details from PEACH)
The present national emphasis on inclusion also means that you will need to be fairly sure that you intend to combine your programme with mainstream inclusion fairly early on to hope for a sympathetic hearing.
For more information on Lovaas/ABA contact PEACH (Parents for the Early Intervention of Autism in Children) 8891 0121 or LEAP (London Early Intervention Project) 7736 6688. To contact other parents running home programmes within Haringey, call Julia Wilkins 8889 8422 or Clare Pierce 8444 2730.
(There are a number of parent-run schools in and around London based on, or including ABA teaching such as Treehouse (in Haringey's Muswell Hill), Jigsaw, Rainbow at Beatrix Potter School, Hillingdon Manor - and Haringey has recently begun to fund a few places at Treehouse.)
2.2.6 Mainstream nurseries (Back to Top)
Your child may attend a mainstream nursery with some extra support and speech and language therapy if you have managed to get the help detailed on a Statement of SEN in time.
If you wish to send your child to a mainstream nursery, you need to know that this may be a difficult environment for most autistic children. A nursery may be very free-flowing with children allowed to choose how to spend their time between play areas, and generally learning through play and contact with other children - not areas our children tend to excel in! Autistic children without behavioural problems may ironically be at a particular disadvantage in these environments, as they do not call attention to themselves and their difficulties may go quite unnoticed. Advice from the borough's autism advisory worker is that mainstream nurseries attached to schools may be a better choice than pre-school playgroups as they are more structured, and being within a school have a resident SENCO and school educational psychologist. If your child is in a mainstream nursery and is having problems, contact the SENCO if it is a school nursery, and request a meeting with an educational psychologist. If your child is in a p re-school playgroup or nursery not attached to a school, you may self-refer to the Educational Psychology service or ask the head of the nursery to do so for you. You may also self -refer to the Speech and Language Therapy service for assessment though actual speech and language therapy within mainstream nurseries is presently restricted to children with statements.
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2.2.7 Haringey funded contact numbers for pre-school year education
problems:
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If you cannot get a place quickly on the Earlybird scheme, and for an overall
guide to dealing with your child's autism, you want to join the 4 day
introductory course held every 2 months for new parents by a group in Finchley
called ‘Resources for Autism'. Tel: 8458 3259. A bargain £40 for all 4 days
including lunch, many parents have found this extremely helpful.
2.3 What specialist help is available for my primary school child? (Back to Top)
2.3.1 Primary Provision in Haringey (Back to Top)
The majority of autistic primary age children in the borough go to a) mainstream schools with varying levels of support from between a few hours a week extra assistance to full-time support from an SNA (Special Needs Assistant); b) to the local special school for learning difficulties, the Moselle which has classes for autistic children; c) to the local SLD (severe learning disabilities) school, William C Harvey; d) to the out of borough day special schools Radlett in Hertfordshire, Whitefields in Waltham Forest (no longer taking new Haringey children), or Harborough in Islington; e) are on home programmes or f) attend the newly opened unit attached to mainstream Mulberry primary school (previously known as Parkhurst Down Lane). A couple go to out of borough residential special schools also.
The LEA's present policy is to increase in-borough provision, particularly by increasing the number of children in supported mainstream settings, and from 2001 onwards there have been very active movements to set up specialist units for autistic children within mainstream primary schools. At the time of writing, there is still only one, opened in the summer term 2002, on the east side of the borough at Mulberry School, previously known as Parkhurst Down Lane School, in N17.
Attracta Craig is charged with the task of improving provision and setting up units/resources for autistic children within mainstream settings in Haringey. They can be contacted on 8489 0000.
The amount of specialist help, support, and speech and language therapy your child gets in a mainstream setting is largely dependent upon the provision outlined in his/her Statement (Statement of Special Educational Needs) and the level of sympathy/understanding/tenacity displayed by the school's SENCO (Special Educational Needs Co-ordinator). For many, obtaining a statement is the only way to get help for their child - be warned the longer you leave it, the harder it may be to obtain one as the government are trying to decrease the numbers of children who hold statements. See previous section on Should I get a Statement?
2.3.2 Special schools for primary age children, most frequently attended by
Haringey children
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You could also contact Haringey LEA's Special Educational Needs section for a list of their Outborough Day Special Schools, which lists neighbouring borough's special schools, some of which have provision for autism. However increasingly as the incidence of autism spirals, the places at these schools have tended to become reserved for the borough's own children. All boroughs are scrambling to increase provision, but mostly fall far behind the demand for places.
The NAS, Autism London, Gabitas and Oaasis will also have lists of special schools (NAS list from Surrey Branch) , including the independent ones around the country, if you want to look further afield. These schools are expensive and LEA's can be reluctant to fund places at them, preferring to provide in-borough for their autistic children. Whichever route you take, contact the schools early, take a look around and if you decide you would like a place there, register your interest with the school and the LEA as fast as possible. Parental preference is supposed to count in your choice of school for your child, but getting approval for an expensive place may not be easy as funds are very limited.
2.3.3 Mainstream primary school with varying levels of support (Back to Top)
There are many children on the more able end of the autistic spectrum attending mainstream school full or part-time, with and without extra help. Hours of support provided vary from none to full-time one to one support, depending partly on the needs of the child and partly on how doggedly the parents have fought for the support.
The quality of support provided can be essential to making inclusion successful. The trend nationally has increasingly been to place funding for special needs provision with the schools to spend as they choose, rather than help being supplied directly by Educational Support Services who have recently disbanded.
The change could be good, as cutting out a layer of bureaucracy should speed up obtaining support, and it could provide for a more balanced and logical provision of support. However it could mean that funds may be simply spent on increasing the number of hours of a classroom assistant, for example, rather than on one to one tuition for one specific child. This may still be to the advantage of some, but not to all children. You need to check that your child is making the expected progress with the provision made by the school, if the school are providing the help. They are not experts in autistic disorders and may have problems at comprehending the quantity and type of help needed by your child.
It will also mean that in future, Statements may outline provision in terms of money allocated to that child rather than on a fixed number of hours of support. The money can be spent on SNA hours, specialist teacher hours, training, specialist resources such as computer programmes etc and this division of the money for the child should be decided with the parent.
As more money is allocated to schools over the next few years for general use for children with special or additional educational needs, far less children will receive statements. Those with needs which are not seen as severe or complex will generally get help from these funds without the need for a statement. From April 2004, this has been included children seen to have needs costing less than £9000/yr.
At mainstream school, your child will have an IEP (Individual Education Plan) which should be updated and reviewed regularly. There will also be an annual review of the child's progress and to check the Statement is still appropriate.
Concerns should be addressed first to the SENCO or the school's educational psychologist, or to Pat Markwardt or Andrew Miller, the borough's outreach workers for autistic children in mainstream provision, or to the Parent Partnership Scheme who will help you with advice and speak on your behalf if required. (Try the NAS or Autism London if you get nowhere with the above).
Speech and Language support in schools for pupils from Year One onwards, is generally restricted to those who have statements or who are assessed at ‘School Action Plus'. At Reception level, it is restricted to those who have it detailed on their statements. A recent development is the setting up of the ‘Speech Language and Communication Service' which comprises the School Improvement Officer for autism (Pat Markwardt), the School Improvement Officer for Language and Communication Difficulties (Language Support Team) and Speech and Language Therapists. This service was set up to prevent crossovers and duplications between the services. Parents may self-refer to the service, or schools can refer children to the service with parents' consent. Contacts are listed on the next page.
Professional Development courses for SENCOs, teachers and classroom assistants/SNAs on teaching children with autism within mainstream are available at a cost from the Professional Development Services. Details from Sylvia Dobie on 8489 5020 or from Pat Markwardt on 8489 5000. You may wish to suggest that the school send someone to any relevant courses, or buy in a training session from Pat Markwardt at the school for any involved staff.
There is in addition, the new unit for children with social and communication disorders (ie autism or autism-like conditions) at Mulberry School in Parkhurst Road, N17, a mainstream primary school, which opened summer term 2002. Over the next few years, it will build to 18 children including all key stage 1 and 2 years. Children will be integrated with the mainstream classes at the main school for any parts of the school social life or the curriculum which they are able to access.
2.3.4 Home programmes (Back to Top)
Within the borough there are also a number of children on home-based ABA programmes who attend part time mainstream school as part of their home programme, and accompanied by their own tutors. (See ‘What specialist help is available for my pre-school child?' section.)
A new development has been the recent agreement to allow a number of children to attend schools offering ABA though it has often followed major effort on the part of the parents or a trip to Tribunal. Hopefully there may be more places like this funded in the future.
Schools offering ABA with Haringey funded places include:
2.3.5 New Social Skills group (Back to Top)
A new initiative started in 2001, is a social skills group offered once a week from 4.15 to 5.15pm over 5 weeks(weekday to be confirmed) for children in Years 5, 6 and 7. The course will run regularly, dependent on demand, at the Moselle School held by autism advisory teacher Pat Markwardt, an educational psychologist and a Speech and Language Therapist. Details from Pat Markwardt 8489 5000.
(See also Secondary Transfer Team details in ‘What help is available to my secondary age child?' section.)
Earlybird Plus
An occasional course for parents with children up to age 8 who missed the Earlybird couse due to a late diagnosis.
Call Pat Markward 8489 5084.
(for parents of children aged 5 - 12 diagnosed in the past 18 months, the NAS run a 6 session course called help! at their Islington HQ in City Road, EC1. Details of forthcoming courses on 0117 974 8411. Courses discuss the condition, behaviour management, communication etc but also education and transitions)
2.3.6 Haringey funded contact numbers for primary age education problems
2.4 What specialist help is available for my secondary age child?
(Back to Top)
There are presently just a few secondary age children known to have ASD within mainstream provision, though this situation will doubtless change over the next few years as the bulge of children with autism now in primary schools reaches secondary age, and as the government's policy on inclusion develops into more adequate provision. For now, the majority of Haringey's autistic secondary school students are in special schools in and out of borough.
2.4.2 Special schools (Back to Top)
Special schools include:-
Details of more schools nationwide can be obtained from the National Autistic Society (NAS list from Surrey Branch) , or from Haringey's SEN department. Autism London have a good factsheet on schools in the Greater London area.
2.4.3 Inclusive secondary provision (Back to Top)
As yet, there are no specialist units for autistic children attached to mainstream secondary schools within Haringey though parents have been campaigning for this for some considerable time. Pat Markwardt or Andrew Miller, Haringey's outreach workers for children with autism in mainstream schools, can assist with problems experienced by secondary school students with ASD in mainstream settings. Tel: 8489 5000.
Parents with children who have attended mainstream secondary schools in Haringey who are willing to be contacted include:
In addition, for primary school children with Aspergers who are likely to enter mainstream secondary school, there is now a service run by the Secondary Transfer Team at the Language Support Team at The Lodge. Co-ordinator Kirsty Watkins. Tel:8801 9622. Over three half terms (6 weeks in the first half of the autumn term, six weeks in the spring term, and 6 weeks in the last half of the summer term) they will teach the student within a small group of 5 other children (possibly made of others with some language problems and one or two potential ‘buddies' in the next school) about listening, conversation and communication skills, organisational and study skills, practical problem solving skills, and will take the children on visits to the new school to accustom the student to the change.
Social Skills Youth Group for children in years 7 and up, c/o Pat Markwardt Tel 8489 5084.
Children with Aspergers can benefit greatly from a Lifeskills group. Guy's
Hospital/Dr Gillian Baird run an excellent course attended by children of 10 -
12 years, but you will need a referral from a sympathetic GP as Health have to
pay for this course. There have been rumours that Harper House may be setting
one up also.
(The Asperger Syndrome Foundation may also be worth contacting as they are considering setting up such a group.) (Or do it yourself with a tutor - one great book published by US company Future Horizons is 'Aspergers -What does it mean to me?' Copy of this book in the Haringey autism library if you want to see it first)
At mainstream school, your child will have an IEP (Individual Education Plan) which should be updated and reviewed regularly. There will also be an annual review of the child's progress and to check the Statement is still appropriate.
Concerns should be addressed first to the SENCO or the school's educational psychologist, or to Pat Markwardt, the borough's outreach worker for autistic children in mainstream provision, or to the Parent Partnership Scheme who will help you with advice and speak on your behalf if required.
Professional Development courses for SENCOs, teachers and SNAs on teaching children with autism within mainstream are available at a cost from the Professional Development Services. Details from Sylvia Dobie on 8489 5020 or from Pat Markwardt on 8489 5084. You may wish to suggest that the school send someone to any relevant courses.
Advice: Read ‘Freaks Geeks and Asperger Syndrome' by Luke Jackson for a view from the inside.
NB Haringey Autism now have a support group for parents of secondary age children with Autism/Aspergers in mainstream schools.
The group meets bi-monthly. Contact Julia Wilkins on 8889 8422 for details
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2.4.4 Haringey funded contact numbers for secondary age education problems