Why parent emotional regulation is key to remediating autism

Righto.  There are a few clips in this blogpost – all of the same activity, interspersed with some explanatory narrative that helps to tell the story of our work on emotional regulation – both mine and Philip’s.

We are making kebabs.The first clip from the activity is where Philip withdraws. 

Prior to this clip, we had been going for about 6 mins without really getting anything done.  At the beginning of the clip, I set some limits around scripting (because it’s becoming a distraction and interfering with our interaction) and then P shares something daft that he and Louis have been doing together that they've been having fun with.  I allow this and share around it, as it isn’t scripting, he is sharing experience.  What’s also nice about this is that he is looking for my non-verbal emotional reaction to the daftness. 

At 0:59 I set a limit around silly name calling by saying ‘we’re not having any silly name calling right now’ and he responds ‘after’. He is managing to inhibit himself here and I spotlight his competence by repeating the word.

At 1 min 14, P withdraws.  He has just come back from the loo, where he washed his hands and got some soap in a cut on his finger that is now irritating him.

I immediately feel a mixture of disappointment, frustration and anger at Philip.  Those of you who have been in this situation will recognise how I was feeling.  You have built yourself up to have a positive, enjoyable interaction (that includes remediation) and it’s all gone belly up L

You get that sinking feeling in the pit of your stomach as you think to yourself ‘Oh blast it, we’re not going to be able to do this activity’ and ‘Oh why can’t he just do it!!’ Very un-RDI like feelings…….but you can’t help your initial emotional response.  Fortunately, about 2 seconds later, the good old pre-frontal cortex kicks in and boots out the amygdala’s initial negative emotional response. 

I quickly get a handle on my feelings by thinking that I will just give it some time and hope that he will re-engage.  The pre-frontal cortex reminds me what I know about his condition - that he can’t help his response because he hasn’t yet got the thinking tools to emotionally regulate in the moment. 

I can be quite fiery myself (it’s the red hair gene) and it has taken a lot of work for me to become more mindful about my feelings so that I can manage them more positively.  The added bonus is that this has paid off in other areas of my life (RDI – my own personal Psychologist!!)

I leave P for 3 mins and then go to the room he has withdrawn to.  I explain that I’m sorry his finger is hurting, suggest that if he rinses it under water it might help, tell him I am going to get on with the cooking and say that I hope he will be able to return once he feels better.  He tries to engage me in a negative discussion (spiralling about how things always go wrong) but I reiterate that I’m going back to the cooking and walk off. 

I have previously had a tendency to be sucked into the negative spiralling by trying to rationalise with Philip (wanting to ‘fix’ things for him and to counter his negativity).  I have learned the hard way that this is counterproductive and actually just makes things worse.

It’s hard just to put a lid on it and walk off like that, because my natural instinct is to want to help him to feel better and I kinda feel mean leaving him in that dysregulated state.  However, I am determined to put the plan that I have discussed with my RDI Consultant into action and to give him space to regulate himself.

It takes him a further 10 mins to regulate himself enough to return to the cooking but he does regulate himself without my help.  Hooray!!  During this time I am doing some preparatory cooking work, as time is getting on and school will be closing in about half an hour.

This next clip is of 4 mins immediately after he re-engages

You can see at this point, he is still locked into his negativity.  During this time I go at a slow pace. 

At 0.52 I scaffold by prompting him for where to look for the peppercorns.

1.23 I take the lid off to begin with - another scaffold as I'm thinking that this may be too much of a challenge for him at this point i.e. after the previous frustration, this new challenge will frustrate him sufficiently to be the straw that broke the camel’s back.

At 2.48 I scaffold by taking the tablespoons out of the picture and looking again at the teaspoon measures.  At 2.58  I can see he has the idea to use 2 x half tspn and he does select the half tspn.  My Consultant commented that my pacing and pausing here were allowing some great problem solving.

We have a bit of a non-verbal miscommunication about how to put the tspn in the jar then at 3.23 his frustration is stopping him from thinking through what he might do here.  I pause and at 3.32 he says he's ready to give up so at 3.34 I come in with the scaffold of removing the spoon from the ring to make it easier to maneuver it.

At 3.42 he speaks disrespectfully to me (this is borne of his frustration with the measuring spoon).  The tone of my response lets him know he has overstepped the mark.   I would have counted any more of this (one of our family our behaviour management tools is 1-2-3 Magic) and I think he knows that.

This clip is where I model for Philip how to take the top off the cloves.

0.02 P references me

0.11 I take the opportunity to model for Philip how to get the lid off

0.29 He pulls the lid off and spills the cloves - I say not to worry.  My Consultant fed back that my calmness around this helps Philip tremendously.  Again – I am being mindful about my emotional response by not getting lost in the frustration of the spill.

0.43    We share a joke.

The final clip is where P does quite a bit of referencing around measuring the cumin and then I model again the grip that is needed in order to take the top off the spice.

0.06 P references me for info, I do thumbs up

0.08 P checks in, I nod

0.15 P checks in re having a heaped spoon, I respond with gesture and facial expression

0.18 A quick flick check in

0.20 I gesture to stop and he references me

0.22 He checks in again but I miss that one

0.58 I model again how to take the top off

1.18 I do it again with more pronounced and slower movements

1.22 He manages to do it and I celebrate his success with a 'yay!

So here we can see a prime example of how important it is for the parent guide to be in the right emotional ‘headspace’ – staying calm, going slow, not treating withdrawal as any kind of failure, being prepared to wait it out.  Self regulation develops from co-regulation: just as we do with our typical children, we parents need to scaffold it for our kids with developmental delay.

And by the way, the kebabs were delish JJ

Addendum to 'Ignition' post

Adding this insight by way of further explanation re the development of resilience - in particular, as it relates to Philip.  It’s so obvious that I totally overlooked it L  It wasn’t until a fellow NAS Councillor and I started to have a discussion about what we see in the clip in the previous blogpost that I realised I needed to clarify that Philip's resilience did not exist before we started using RDI to work on social and emotional development, and its taken us years of hard slog to get to where we are now with it.

I'm not kidding - it didn’t exist and was the source of many, many meltdowns (not just for him) as he experienced failure after failure (social and otherwise) and was not able to have another go at something.....even the smallest and (what would seem to typically developing people) most insignificant challenge.

That is why I am so fearful in the clip when I try to suggest that he makes do with me having lit the gas ring.

In years past he would not just have walked away from the whole activity as soon as he 'failed' at the first try lighting the ring, he would also have gone into a psychological downer on himself e.g. 'I'm rubbish...I'm useless....I can't do anything', often culminating in 'my life sucks' or 'I don’t want to be here any more'.

That is very hard for any parent to hear.  I hope people can appreciate why, for me, impairments in resilience are the curse of autism.

Ignition

Over the holidays I’ve been reading several different blogs and noticing two common themes.  The first is the number of parents who state ‘I wouldn’t change his autism for the world’ (or similar) and the second is once again the myth that if we ‘teach’ our kids with autism ‘social skills’ then everything will be ok.  You will remember I have written about this previously http://bit.ly/vLkMNE.  It’s my most-read blogpost, with 716 views, so it must’ve struck a chord somewhere.

These two themes seem separate but in fact they’re cunningly interlinked.  Let’s explore……..

I have great difficulty understanding parents who say they wouldn’t change their child’s autism.  I don’t have difficulty accepting that they have a right not to change their child’s autism but I can’t get my head round their rationale for not changing it.  Maybe their experience of autism is very different to mine – clearly autism manifests itself differently in different children, but our family’s experience of it has been that it’s a very rough ride.  I won’t go into detail but suffice it to say that both me and Dixon are tough cookies with pretty robust resilience.  Fortunately we kinda complement each other in the resilience stakes – certain things that really bring me down don’t affect Dixon as badly and vice versa, so, either one of us is able to be strong for the other, or if we are both really low (and there have been 3 or 4 times over the years when we have been to that godforsaken place) then we eventually tend to work together jointly to find a way forward.  We have had to plumb the depths of our resilience over the years in order to deal with the impact of the condition, both externally (numerous fights over access to appropriate health care and educational provision) and internally (keeping our marriage strong and looking after the emotional wellbeing of our family).

There are many good things that have come out of having a child with autism.  It has taught me a great deal about other people; it has strengthened my resolve to fight for the rights of marginalised groups; it has introduced me to some of the most emotionally intelligent and creative people; it has introduced me to developmental psychology and child development (with which I am now obsessed), I have come to fully appreciate the courage of children and adults with disabilities in a way that I wouldn’t have if I hadn’t been directly involved and it has made me work on my own self-regulation and self-awareness.

Given all that – if I had the chance to wave a magic wand and take autism out of the equation, would I? 

Well.......all these positives pale into insignificance beside the impact that autism has had on Philip’s quality of life: difficulty making and maintaining friendships, social isolation, being on the verge of mental health problems (we definitely had our underpants on over our trousers bringing him back from the brink of that one).  So would I wave the magic wand?  In a heartbeat.  No question.

 I guess I don’t really subscribe to the ‘social model of disability’, at least, not when it comes to autism.  For some disabilities, yes, the social model fits.  But with autism, one of its most disabling aspects (in my experience) is low frustration tolerance coupled with very severely impaired resilience.  Frustration tolerance and resilience aren’t things that are social in origin (created externally) – they are intrinsic to the person…..something that grows throughout childhood and adolescence as part of social and emotional development. 

So – if impaired resilience is intrinsic to autism (and it follows that it must be, given what we know from research about impairments in episodic memory – the seat of development of resilience), then why wouldn’t you change someone’s autism?  Certainly for my boy, if we hadn’t worked on improving episodic memory and resilience, then I would feel as if I was condemning him to a life of low self-esteem and lifelong feelings of ‘failure’ and lack of competence.

Below is a 2 min clip of resilience-related Chocolate Brownie making in the Not Nigella Not Jamie kitchen.  You may notice that we have had a refurb - well, actually, we’ve moved house which is excellent on so many levels, one of them being that the way the kitchen is configured lends itself to better participation by the kids in NNNJ activities, plus easier camera position.

We got chef hats for Xmas (Philip’s idea) J Here I’m working with both boys in parallel i.e. each boy is making their own choc brownie and I am facilitating when necessary from behind the camera.  This in itself is a significant step forward – when remediating autism through RDI, working with more than one child (even a close, supportive NT sibling like Louis) is not recommended until the child with autism has mastered certain fundamental developmental steps.  Until those competencies are in place, the interaction can be too dynamically challenging – both for the child with autism and (certainly in my case) for the RDI parent.

In the clip, Philip is having trouble turning the gas ring on.  He is quite wary of the flame and doesn’t like the ignition.  Up to now, I’ve always been the one to ignite the gas ring.  He (wisely) elects to move his pan to the back of the hob (good problem management on his part).

He has several tries at lighting the ring.  For me, as his guide and his Mum, my knowledge of where he is psychologically with this gives me quite a challenge.  On the one hand, I want him to have a positive experience of mastering the ignition and managing the flame.  On the other, I am very anxious about what might happen if he is unsuccessful in igniting the ring.  I don’t want to overcompensate (undermining his independence and self-esteem), but neither do I want him to experience feelings of failure (which would also result in undermining his self-esteem).

You can see my hesitation about this both as he is trying to ignite the ring and when I model it for him and try to suggest that my lighting of the ring will suffice.  Philip, however, has a different idea and keeps saying ‘no, no, it has to work’ - by which I think he means that logically, having seen both me and Louis do it, he must be able to do it (good thinking on his part).

In the event, I decide to let him keep having a go.  My rationale for this is that if he is successful, I will be able to spotlight his competence and success, thus building his resilience by adding to his bank of episodic memories that he will use in the future when confronted with a similarly challenging situation.  Plan B is that if he gets too frustrated and gives up or the ring doesn’t ignite for whatever reason, I will model again how to do it whilst praising him for his persistence and reassuring him that he can do it.

Here is what happens:

Isn’t that great?  Here we can see that Philip is most definitely experiencing feelings of competence, as he turns to reference me and share his experience with me by celebrating his success (@ 1 min 55).  And Louis chimes in too, with his ‘Philip did it!’ which is lovely and very typically supportive of Louis.

How can you ‘teach’ someone to have the kind of expereince that Philip has just had here?  It’s not possible.  It’s a developmental competence that is contingent on the appropriate preceding steps having been mastered and the appropriate framework (the guided participation relationship) being in place.  So – you can support someone to learn how to share (and embed episodic memory) in this special reciprocal way, but there is no way it can be ‘taught’ as a ‘skill’.  It’s automatic, reflexive and happens in a nano-second once someone has the motivation to interact reciprocally.

And therein lies my problem with the misnomer of ‘social skills’ and the idea that improving aspects of someones social reciprocity (changing their autism) is not a good thing.

Unfortunately, ‘social skills’ projects and interventions continue to be promoted, even by the biggest autism charities and support organisations (who should really know better, given the evidence).  The sceptic in me says that one reason for this is that there is money in ’social skills’ groups, ‘social skills’ training, and conferences that purport to give parents the tools to improve ‘social skills’ etc….in fact, there is a whole industry built around this….but no evidence (that I am aware of….if you know of any, please let me know) that any of these ‘social skills’ programmes and interventions actually have a positive, lasting impact upon quality of life for people with autism.

By quality of life I mean sustainable and measurable improvements in the ability to make and maintain meaningful friendships and relationships (not just superficial friendships), as well as increasing independence and employability.

It’s kind of ironic that some autism organisations castigate proponents of certain interventions for exploiting vulnerable parents by ‘pedalling unproven methodologies’, whilst themselves promoting (and making lots of money out of) unproven ‘social skills’ groups and ‘social skills’ training.

In the spirit of the season, bah humbug!.........and bring on part two of this research http://bit.ly/uH35zu which modestly concludes that ‘Treatment approaches which focus on interaction between children with autism and their caregivers have the potential to affect the children’s emotion regulation abilities which, in turn, are likely to influence other areas of emotional, cognitive, and social development.’  

My money is on part 2 of this research telling us exactly which areas of emotional, cognitive and social development this type of intervention can improve.  And my money is on these being some of the difficulties at the heart of autism.  RDI was the intervention used in part 1 of this study by the way.  Happy New Year everyone J

Challenging cuts part trois

We moved house on 17^th December – what a damn fool time to move!!  Not that you really have any control over that but suffice it to say we had a somewhat chaotic Christmas.  Hope you all had festive frolicks and are enjoying the yuletide break.

Ok so we’ve looked at legal duties and best interests (part 1); consultation and human rights (part 2); now we turn our attention in part 3 to the disability equality duty and a conclusion to the feature.

Disability equality duty

The disability equality duty is a duty on public bodies to have ‘due regard’ to a number of specified needs, including the need to promote equality of opportunity for disabled children. The duty applies to all decisions by public bodies, including those in relation to individual cases; see Pieretti v Enfield [2010] EWCA Civ 1104. So when (for example) a local authority is deciding what level of service it should provide to an individual disabled child it must consider the need to promote that child’s equality of opportunity compared with other children.

However, the disability equality duty also applies when high-level decisions are taken about the nature and shape of services. In discussions about the future of services to be provided to disabled people, public bodies need to be able to show that they have had the disability equality duty in mind at all relevant times. If they cannot, it is likely that, if challenged, the High Court will quash any decision taken and require it to be taken again with due regard to the duty.

It is important to understand that the disability equality duty does not require the public body to achieve equality of opportunity for disabled people – just to pay due regard to this need when reaching its decisions. However, it may be extremely difficult for a public body which is proposing a substantial cut to services which are valued by disabled children and/or disabled adults to show how it has had ‘due regard’ to the duty.

An important issue is when precisely in a decision-making process must a public body have regard to the disability equality duty. The Southall Black Sisters case (R (Kaur and another) v Ealing LBC [2008] EWHC 2062 (Admin)) shows that equality duties must be considered when proposals are drawn up. It is therefore unlikely to be good enough for a public body to commit to doing a disability equality impact assessment after a consultation – even if before the actual decision is taken.

The disability equality duty can be enforced on an application for judicial review by any disabled person or their family if they are potentially affected by the decision. The remedy will be to quash any decision taken without due regard to the duty and an order requiring it to be retaken lawfully.

Conclusion

The general duties set out in this article all have a role to play in challenges to cuts to services which benefit disabled children and/or disabled adults. Underpinning all of them is a requirement under domestic law and international law that disabled children and their families should be supported to live ‘ordinary lives’. Respect for the human dignity of disabled children and disabled adults is nothing less than what the law requires. Disabled people, families, local groups and their lawyers and advisers have the legal tools to ensure that, even in a time of intense pressure on public finances, the legal rights of disabled people and their families are respected.

Don't forget - if you need to challenge a social care decision through the courts in England and Wales, it is possible to bring the challenge in the name of the child or adult with autism.  An adult who is on benefits and children who are of course minors are likely to be eligible for legal aid. 

Unfortunately, the same does not hold for challenges to education :(  I guess the system would be inundated with requests for legal aid if it did.  If you need to challenge an education decision, these guys http://www.maxwellgillott.com/ are a good starting point.

Steve Broach practices at Doughty Street Chambers and also writes for the publication Autism Eye.  He can be contacted at s.broach@doughtystreet.co.uk Please put NNNJ in the subject line for any enquiries to him.

Best wishes to everyone for the New Year.

Challenging cuts part deux

Hellooooooooo again.  Here is part two of ‘How the law can be used to fight cuts to services for disabled people.’  Part one looked at introduction, legal duties and best interests.  Part 2 will cover consultation and human rights followed closely by part three on the disability equality duty and conclusion.  Over to Steve (in black type).

Consultation

Whether or not there is a duty to consult, once a public body decides to consult it has to do so properly. This essential starting point was made clear in R v North and East Devon Health Authority ex parte Coughlan [2001] QB 213 (Coughlan). In other words, whether consultation is a duty or a choice, once launched the standard and quality of the consultation has to be the same.

Even if there is no specific duty to consult on a particular issue, disabled people’s organisations, parents’ forums and other local groups may well have a legitimate expectation that there will be consultation about changes to important services. The recent Building Schools for the Future case provides an example of a failure to consult at all amounting to an ‘abuse of power’; R (Luton BC and others) v Secretary of State for Education [2011] EWHC 217 (Admin). Once consultation begins, Coughlan makes clear that four things must be in place to make it lawful:

1) Public bodies must consult in good time – so that responses to the consultation can still genuinely be taken into account before the final decision is made;

2) There must be enough information so that people responding to the consultation understand the proposals and can make an informed response;

3) There must be enough time for responses. Whether ‘enough’ time has been given will be judged by the court, if the consultation is challenged, on the facts of the individual case. However, for example, a very short consultation over a school holiday period in relation to a service used by disabled children is unlikely to be ‘enough’ time;

4) There must be genuine consideration of the responses – not just ‘lip service’ paid to them.

If a particular consultation does not match these requirements, any child, adult or family potentially affected by the proposed changes can bring an application for judicial review to challenge the consultation. If the court agrees that the consultation is unlawful then the court will quash it and make the public body consult again – and do it properly the next time.

Human rights

The most important human rights in the context of cuts to services are those protected under article 8 of the European Convention on Human Rights, incorporated into English law through the Human Rights Act 1998. Article 8 requires respect for two distinct but linked rights, the right to family life and the right to private life. The right to family life is simpler to understand; respect for all types of family is required, but the right to private life is particularly important for disabled people.

Private life includes a person’s ability to function socially (R (Razgar) v Home Secretary [2004] 2 AC 368, speech of Lord Bingham) and a person’s ‘physical and psychological integrity’ (Pretty v UK (2002) 35 EHRR 1). In effect, this means that disabled people have a right under article 8 to services and support to enable their personalities to develop and for them to function socially.

Article 8 requires the state not to ‘interfere’ with a person’s right to respect for family and private life unless that interference is ‘in accordance with the law’ and ‘necessary in a democratic society’, which means proportionate (see below). Any decision to cut or withdraw services that support a disabled person’s ability to function socially and/or their psychological integrity is an ‘interference’ with that person’s article 8 rights. For this ‘interference’ not to breach article 8 and be unlawful it must meet these two requirements. To reiterate, any cut to a service to disabled people will breach article 8 unless it is (i) in accordance with the law and (ii) proportionate.

For the purposes of article 8, the ‘law’ includes not just legislation but (for example) statutory guidance. This means that a breach of (for example) the Framework for the Assessment of Children In Need and Their Families, which requires disabled children to be assessed and provided with sufficient services to secure their well-being, is likely to result in an unlawful interference with a child’s article 8 ECHR rights.

Even if all the relevant ‘law’ has been complied with, the final test under article 8 is whether the decision is proportionate (‘necessary in a democratic society’). The key judgment here is the speech of Lord Bingham in an immigration case, Huang v Home Secretary [2007] 2 AC 167. Lord Bingham emphasised that for a decision to be proportionate it must be no more than necessary to accomplish the objective. So in the context of cuts, if other less drastic steps could be taken to achieve the necessary savings then the decision cannot be proportionate and therefore the proposed cut would breach article 8. Furthermore, Lord Bingham added in Huang that the ‘overriding requirement’ of proportionality was ‘the need to balance the interests of society with those of individuals and groups’. The ultimate question under article 8 in any cuts case therefore is whether the wider economic interest justifies the decision to withdraw or reduce services to vulnerable people.

What about a situation where a disabled child or adult is not yet receiving services? There may then be a ‘positive’ obligation under article 8 for a public body to show respect for the person’s right to family and/or private life through providing services. This is particularly so for children if such action would ‘enable family life to continue’ (Anufrijeva v Southwark LBC [2004] QB 1124, judgment of Lord Woolf).

Bringing a challenge under article 8 requires a person to be an actual or potential ‘victim’ of a violation of their rights; section 7(1) of the Human Rights Act 1998. This is not supposed to be a high hurdle and any child or family who are or may be directly affected by cuts would be able to bring such a challenge.

I know it’s a bit dry – but worth knowing about so parents and people with autism (in England and Wales) can see what their legal position might be in the event that they have to challenge a decision on cuts to services.  A friend of mine who runs a support group is finding that more and more adults with autism are coming to him for advice when their Direct Payments have been cut.  Local authorities have been trying to change the assessment criteria for social care services – proposing to help people in the ‘critical’ category but withdraw services from those in the ‘substantial’ category. In Kirklees, a neighbouring authority to me, a legal challenge was brought on behalf of three residents (two with autism), following poor consultation (as outlined above).  The Council settled the matter (by reinstating services to those meeting the ‘substantial’ criteria) before the matter went to court.

Because the people who brought the challenge were vulnerable adults receiving state benefits, they were eligible for legal aid, so the challenge didn’t have a financial cost to the family.  Worth remembering!!

Challenging cuts to services: using the law

Steve Broach is a barrister at Doughty Street Chambers. Before coming to the bar, he was campaign manager for the Every Disabled Child Matters campaign. He previously worked for the National Autistic Society and TreeHouse, the national charity for autism education (now called Ambitious About Autism).  On top of all that, he is a totally fantastic chap and a real autism and disability hero, who most definitely has his underpants on over his trousers ;-)

I am reproducing here an article he wrote in the UK’s Law Society Gazette, entitled ‘How the law can be used to fight cuts to services for disabled people’.  The piece is long, so will be covered over 3 blogposts.  It will look at: introduction, legal duties and best interests (part 1); consultation and human rights (part 2); disability equality duty and conclusion (part 3).

Introduction

Disabled children and disabled adults need significant support from public bodies to help them lead ordinary lives. These groups require both specialist and targeted services and flexible universal services which can be adapted to their needs.

The past decade has seen services for disabled children and disabled adults improve, albeit patchily, under a focused programme of investment. A key example of this is the Aiming High for Disabled Children programme, which led to over £800m being spent on improving disabled children’s services during the last spending review period.  However, it is precisely because of these large sums that disabled children and disabled adults are likely to be hit hardest by the coming cuts to public services.

This was made clear at last week’s National Autistic Society professional conference in Manchester, where hundreds of delegates from all over the country expressed serious concern about the future of services for children and adults with autism, from specialist education services to services helping adults with autism to enter employment.

I am concerned here with some of the general legal obligations which may be used by disabled children, disabled adults and their advocates to resist spending cuts. And it should also be remembered that where a duty arises to provide a service to an individual, compliance with this duty is likely to be necessary regardless of whether there is sufficient money in the budget. Decisions by public bodies that run contrary to their statutory duties, for example to slice a fixed percentage off the allocation of personal budgets in adult social care, are highly likely to be overturned by the High Court.

Legal duties

There are four key duties that can assist in fighting proposed cuts to services for disabled children and disabled adults:

      1.  The duty to ensure that children’s best interests are a ‘primary consideration’ in decisions affecting them and that public bodies carry out their functions having regard to the need to safeguard and promote children’s welfare;

      2. The duty, if consulting on a proposed change to a service, to do it properly;

      3. The duty to respect disabled children and disabled adults’ human rights, particularly their right to family and private life; and

      4. Section 49A of the general disability equality duty in the Disability Discrimination Act 1995, to be replaced from 1 April by the public sector equality duty under section 149 of the Equality Act 2010.

Best interests

One of the central obligations under the UN Convention on the Rights of the Child (Article 3) is that in decisions affecting children, their best interests should be a ‘primary consideration’. In ZH (Tanzania) [2011] UKSC 4, a case involving the proposed deportation of a mother to Tanzania when her children were British citizens, Baroness Hale stated that while all other considerations could outweigh a child’s best interests, ‘the important thing…is to consider those best interests first’.

In the context of cuts to disabled children’s services, the ‘best interests’ duty requires the impact of the decision upon them to have been the first consideration in the minds of the decision-makers. Any decision to cut services without children’s best interests being a primary consideration is therefore potentially unlawful. The requirement to act in children’s best interests could be enforced in the courts by the child, their parent or another person close to the child.

A key route under which the courts can consider whether proper regard has been had to disabled children’s best interests is through section 11 of the Children Act 2004, which requires public bodies to have regard to the need to safeguard and promote the welfare of children in carrying out their functions. Public bodies are not required to actually safeguard and promote children’s welfare under this duty, but they must consider this issue when reaching their decisions. Any decision to cut or withdraw a valued service to disabled children which does not see an alternative service put in place may be open to challenge under this duty on an application for judicial review.

Please stay tuned for part 2 on 'consultation' (i.e. a public body's duty to consult properly over proposed changes to services) and 'human rights'.  If you'd like to receive a notification email when the next blogpost is posted, please enter your email address in the 'follow by email' box (top right).

Advice on special educational needs

Another guest blogpost - this time from the organisation Independent Parental Special Education Advice (IPSEA) with some fab information about what IPSEA does and how they can help families of children with Special Educational Needs.

Independent Parental Special Education Advice – known as IPSEA

I asked Jane McConnell, Chief Executive of IPSEA, to tell us about their work. Jane became an IPSEA volunteer 10 years ago.  She has been a paid IPSEA staff member for the last 7 years.  She has a 12 year old son with complex SEN.  Jane has overcome several substantial hurdles to get the right education for him.  She has firsthand experience of what thousands of parents have to go through. 

What is IPSEA?

IPSEA is a registered charity providing free and independent legally based advice for parents whose children have SEN / disability. We have been supporting parents since 1983. IPSEA covers England and Wales. We use highly trained volunteers to deliver all our advice and support. We offer more support to the most disadvantaged families. A small team of paid part time staff co-ordinate and train our volunteers.

What does IPSEA do?

IPSEA advises families whose children have all types of SEN / disability, including behavioural problems, communication difficulties, learning disabilities and autism. IPSEA often helps families before their child has even been diagnosed. IPSEA’s legally based advice gives parents the confidence to exercise their rights. This basic understanding of the law equips families to be more involved in the decisions that affect them and helps them to avoid future issues. IPSEA helps around 3,000 families each year - thanks to our dedicated volunteers and supporters.

How can IPSEA help me?

IPSEA offers parents the following free services:

·        Website with over 80 resources

·        Free phone Advice Line for parents who are in negotiations with their local authorities, but not in a Tribunal situation

·        Local rate Tribunal Helpline advising parents who are taking a case to the Special Educational Needs and Disability (SEND) Tribunal

·        Tribunal casework support for those who need extra help

·        Monthly walk-in advice clinic in Saffron Walden

·        IPSEA on facebook and Twitter

Common problems

Many simpler and common issues with the SEN system can be resolved with the help of IPSEA’s on-line resources:

·        Understanding SEN jargon

·        Common problems when your child has SEN but no statement (cases 1-11)

·        Asking for a Statutory Assessment and getting the provision in place

·        How to handle a refusal to assess

·        Difficulties during the assessment (cases 12-15)

·        Issues that arise when you receive the proposed statement (cases 17-26)

·        Getting the final statement right (cases 27-30)

·        Common problems when your child has a statement (cases 31-40)

·        Appealing to get the secondary school you want  

·        Exclusion fact sheets

·        Home/school transport

What parents say about IPSEA

Our website has quotes from parents we have helped. We survey the parents that have used our services to ask them for feedback. Their feedback helps us improve our services and secure the funding we need to keep them going.

Using parents’ experiences to influence change

IPSEA gathers evidence and uses it to lobby for changes to current legislation. We also attempt to correct the practices of local authorities whose policies are not in line with legislation. 

1,039 people took part in our SEN Green Paper survey.  796 of them were parents of a child with SEN.  They agree with IPSEA's strong belief that parents' views need to be listened to and respected by the professionals responsible for assessing and educating their children.  Without this basic respect, mistrust builds up.  This can have a detrimental effect throughout the child's education. 

IPSEA works constructively with the government. We were particularly pleased that the new administration activated the right of parents to make an appeal to the SEND Tribunal if their child’s Statement did not reflect the needs of the child.

We gave evidence to the parliamentary education committee on the SEN Green Paper. We also successfully campaigned to protect legal aid for SEN appeals.

Keeping IPSEA going

It costs IPSEA around £30 to provide telephone advice to a family and around £300 to provide a tribunal caseworker. We appreciate all the donations we receive. You can donate using PayPal or debit/credit cards. You can also set up regular donations.     

IPSEA is always looking for more volunteers. You need to complete our training first. This training is very thorough so we ask you to commit to actively volunteering with us for at least 2 years.  "I enjoy the feeling of empowering parents - talking them through their problem and sending them off with a clear plan of action" says one of our experienced volunteers. 

And back to me - what a really extensive range of services :)  I wish us parents of special needs kids didn’t need to use them….but great to know IPSEA has got your back when you do.  Thanks for a really informative, helpful guest post.