Parents in the cold over developing the Independent Supporter role

Curiouser and Curiouser.

No sooner does the Council for Disabled Children reveal the names of those organisations picked to provide Independent Support to parents in the new Education Health and Care Plan system, than the National Network of Parent Carer Forums drops a bit of a bombshell.

The very system that is supposed to help parents co-produce EHC Plans, did not bother to co-produce its design! Oops. Bit of an oversight, but then co-production is bloody inconvenient at times, isn't it?

The NNPCF released a detailed and somewhat miffed Position Statement, complaining that it had barely even been consulted, let alone closely involved with designing one of the most eagerly awaited parts of the reform - the deployment of £30million worth of keyworkers, 12 per area, who would gently lead, advocate, explain and assist parents through the new system, from assessment application through to helping them manage an appeal to the First SEND Tribunal (says it in the CoP so it must be true).

And yet the minutes of a recent Early Support and Independent Support Programme Board Meeting tells us the CDC is anticipating that Independent Supporters won't be doing any such thing when it comes to Tribunal.

"....CL [Christine Lenehan, of CDC] reassured the board that Independent Supporters will be working with and not against LAs and that legal training is provided to give Independent Supporters an understanding of the legal framework of the reforms, not advice on how challenge LAs on the law."

Now, this may just be an unfortunate choice of words, "working with and not against LAs", and if someone should know it is Mrs Lenehan, but I do think there needs to be some clarity and written confirmation about this in the SEND Code of Practice as to EXACTLY where the Independent Supporter role stops when it comes to appeal.

independent support
Credit: http://bit.ly/1njtcy7

Back to the NNPCF. This is the body that links together all the country's Parent Carer Forums and has trumpeted co-production from the roof-tops from the start (as have we here of course, as most of us are former PCF co-chairs) It is funded by the DfE, as is the Parent Carer Forums participation in the Pathfinder project.

The position statement is so jaw-dropping from an organisation that is used to, in this process, working closely with the CDC and the DfE, that I'm just going to print most of it below.

"NNPCF have been watching the progress of the development of the Independent Supporter programme since it was announced earlier this year. To a certain extent the NNPCF have been involved in discussions about the role of Independent Supporters with the Council for Disabled Children (CDC) and the Department for Education (DfE); however as the programme has developed some concerns have been raised by both our Steering Group and Local Parent Carer Forums around the implementation plans for this programme."

"The [NNPCF] Steering Group were not involved in initial discussions about the Independent Support Programme but were reassured by both the Department for Education and the CDC that as the programme progressed the parent carer voice via the NNPCF would be central to the process. The NNPCF Steering Group were pleased to have had some early discussions with the CDC and felt this was a useful dialogue which we believed was starting to shape what was going to be a very helpful addition to the Reforms as we all transition from the old arrangements.

"One of the main messages we shared was the requirement that anyone who was involved in developing or delivering the Independent Support Programme in local areas should work in partnership with their Local Parent Carer Forum. This message was welcomed and reflected in the tender for the Evidence and Build Phase of the programme. The NNPCF were also involved with awarding contracts to organisations involved with this phase of the service and had representatives on the panel that evaluated the bids for this work. Within this landscape, the NNPCF were encouraged by the level of involvement and many Forums will be aware of our enthusiasm and how well the CDC had set the expectations of Forums and potentially those parents who are likely to be supported by the service."

"We are disappointed that parent carers have not been involved in strategically developing the programme, as we had thought we would be from January and that the need to work with Local Parent Carer Forums was not clearly articulated in the Invitation to Tender document..."

"It is disappointing that we have not been able to work with local [Parent Carer] Forums to do this, and to provide the parent carer perspective, view, and feedback from our parent carers as part of the full development process. The NNPCF Steering Group was however again invited to provide representatives to sit on the panel that evaluated the bids received. We accepted this invitation because we believed that it was essential that the parent carer voice was part of this process.

"As the Independent Support Programme has developed, the NNPCF unfortunately feel that the service definition and role of the Independent Supporters appears to be less clear than was originally expected. We are aware that there is a high level of concern in Local Parent Carer Forums regarding the level of local knowledge that Independent Supporters will have and how effectively they will be able to deliver the service to Young People and Families in any local area."

"Having not been involved in the co-production of the ultimate design as originally thought, we are restricted as to what degree we can influence this, however the NNPCF suggest that Parent Carer Forums establish a useful and effective relationship with their own group of Independent Supporters (ISs) with a view to ensuring that they meet their main aim of helping Young People and their families overcome the hurdles of the coming months."

"There is no guidance to determine how the ISs will gain knowledge of local practices or local implementation and how they will keep up to date with these over time. The NNPCF recommend that ISs work closely with Local Parent Carer Forums to ensure that everyone works together to maintain a balanced and knowledgeable approach to the evolving landscape in their areas."

Indeed in certain areas of the country, the IS contract has been awarded to organisations from a completely different part of country! Additionally, as some Parent Carer Forums are over-stretched as it is managing Pathfinder/implementation/parent information work, where the capacity will come from in helping the new IS organisation is a big question. And who will be paying them for it? Are they supposed to do it for free?

Talking about money... the NNPCF said in its statement that despite it had originally being stated that each area may get up to 12 ISs supporting the transition process, "however it might transpire that these numbers may not be achieved within the funding available. Consequently each local Independent Support service may look for local volunteers to help increase resource."

WTF? Get some people to do the job for free while others are paid for it? Are you kidding? It goes on to suggest that Forums may wish to recommend individuals or suggest areas to look for knowledgeable local resource.

"To this end NNPCF are absolutely clear that ALL ISs should be resourced locally and have explicit local knowledge of parent carer issues and the local support landscape."

Oh I know, why not ask the local (over-stretched and under-sized) Parent Carer Forum to do that as well? For free? Supposing they have that knowledge themselves in the first place! Let's not forget that PCFs across the country are of different size and have been established for different lengths of time and have wildly varying capacities.

Each IS service provider has to determine its own referral procedure, i.e. how to apply & which parents will get the benefit of an Independent Supporter. The NNPCF is calling for Parent Carer Forums to be included within the process or understand it so that they can signpost those who need support correctly. But again, some PCFs, like most voluntary committees, have only a small number of active and knowledgeable members, with others who just turn up to meetings and do little in between (for many reasons). How are they going to find the time for this? And why should they be the ones to fulfil this role anyway? Who says they want to decide whether another parent should get support or not? That's a big responsibility and the DfE said, as I stated yesterday:

Local authorities should work with organisations providing independent supporters to ensure that there are arrangements to offer help from an independent supporter to as many families as possible who require it.

Semantically, you can say well, "as many parents as possible" means within the available capacity, but now you're adding another layer of judgement, because the implication is that there will not be enough ISs to come close to the number of parents "requiring" one - i.e. all of them, especially in this transition phase. And so PCF reps, all parent carers themselves, but possibly with no other qualification than belonging to a committee, can help judge whose needs are greatest. This is no disrespect to PCFs - I'm sure most would agree that judging which of your parent-carers-in-arms can fend for themselves in a new, largely untried, assessment for their disabled child is not something they would relish or feel qualified for. And DEFINITELY not unpaid!

This is a huge and, in our opinion, unrealistic expectation on forums, especially if they are expected to do this volunrarily. The NNPCF is in a very difficult position - on the one hand wanting their forums to be involved and on the other, knowing full well the highly impractical nature of this considering existing demands on PCFs and of course, demands on their time as parents of children with disabilities.

The statement also says:

  • Forums should also understand the working practices so that they can help support its [IS service] delivery, monitoring and if necessary improvement over time.
  • Forums should understand the legacy of the service so that once the ISs are no longer available, the lessons learnt and good practice is continued elsewhere.

Hold on... did that say, "once the ISs are no longer available,"? Well, yes, funding is only until 2016 initially, but surely they will continue to be supported after that? Won't they? Hello? Anyone know? Or will that be the job of the next government to decide?

This is most of their statement, but you can find it all here

Some questions we need answering by the DfE:

  1. Please explain the lack of co-production here that has so upset the NNPCF they have had to write this statement (though not sure why it took this long)?
  2. What WILL happen to the funding stream after 2016? Is the DfE expecting IS organisations to be sponsored? Take on advertising on the back of their jackets?
  3. Will this service be properly funded from the start - £30m is not enough to cover co-production from parent-carers (not necessarily PCFs)
  4. If parents carers DO get involved with the selection process (which just makes me feel sick even saying it) will they have training in it?
  5. If a parent is NOT lucky enough to get help and their application fails because of it (as I asked yesterday) what happens then? Can they complain? And to whom? The wording of who can have one in the CoP is too woolly for a parent to be able to appeal the lack of one.
  6. Will the Independent Supporter be able to advocate for the parent at a Tribunal?

Further reading (because you just know you want to):

Additional research: Debs Aspland

What's your view?

Tania Tirraoro
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Tania Tirraoro

Founder, CEO at Special Needs Jungle
Founder of Special Needs Jungle. Parent of two sons with Asperger Syndrome.
Journalist & author of two novels and a guide to SEN statementing. PR & social media expert. Rare Disease & chronic pain patient advocate.
Tania Tirraoro
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11 Comments

  1. vaguest

    All sounds like a big scary mess, which I am likely to be launched headlong into in November, at my son’s next review, as it is a Transition review, he will be 16 and looking to move into the 6th form of the specialist provision he currently attends, and I have no idea whether or not he will be left on a Statement or moved to an ECHP. I am already suffering from panic disorder. And now “Independent Supporters” are going to be “working for the LA, not against.” That puts them in vitually the same category as the Parent Partnership services, many of which are almost totally ineffective due to being funded by the LA, despite their supposedly “independent” nature.

  2. Judith Newman

    So if I’m reading everything correctly, the new IS service providers should work with the local PPS and PCF to establish a service. If that is the case then this service won’t start to be developed locally until September because of the timing of the announcement of contract winners. Today is the last day of term in this area – how many PPS Officers are not on a term time only contract? How many PCFs are working at full capacity over the summer holidays? Hardly any, I should think. This will mean that these large, not-local organisations will be developing this service with the LA and nobody else! No coproduction in sight yet again.

  3. Zoe Thompson

    Excellent post and thanks for keeping us in the picture. It does sound very much like a dog’s breakfast and hardly surprising that NNPCF have taken the hump with CDC. When it comes to Christine Lenehan’s comment about working with the LA we need to remember that part of her job is to be diplomatic. If we look at who is delivering the training to ISs it is clear that the focus of the training will be on making sure parents voices are heard and their rights respected and enforced. So I’m not worried about that. But I am worried that parent voice has been sidelined in the rest of the process and that PCFs will be overloaded.

  4. Amanda

    All services funded in this way always have ‘attachments’ which means no ‘rocking the boat’.That pool of money should have been left as a resource so that parents could choose their own advocate/support who would then receive a standard set amount.As parents we often find such services provided through a group/charity mean we wont get stand alone help aimed at helping us fight ‘the system’.This will again prove to be wasted millions as the majority of us will stick to the seperate advocates and smalls charities we have always used.

  5. Deb

    Great post. Personally I have no confidence in my local authority or my local parent forum. Our initial forum for those who had children with SEN fell apart; one of the reasons being that the LA was not listening to the forum members. As far as I believe it has now been assimilated into the general forum which concerns me. During my time there it was quite obvious that the general forum was viewed as a means of promoting the voices of parents who lived in the poorer areas. Parents from elsewhere I felt were tolerated.

    Now to read that these forum members could have the power to determine which parent-carers need independent support troubles me. I realise that there are probably some good groups out there whose members could rise to the challenge but I don’t feel confident with my group. As its a general forum, few have experience of parenting a SEN child or children or will know a family well enough to judge whether they need support. Furthermore, because of the bias towards a certain postcode I can almost guarantee that this support will be heavily weighted towards that postcode as everything is in my area.

    As for IS working for the LA, then they are no better than parent partnership who, frankly, I didn’t find that helpful.

  6. Bren

    I can’t say that I’m surprised that there seems to be back-tracking on the independence & impartiality of the IS service.

    The ‘problem’ of involving parent-carer forums is as stated – undermanned. Add to that, under-educated on issues of law and one starts to wonder if they are well placed at all to ‘co-produce’ at all. I don’t mean that disrespectively, many individuals put in huge amount of hours, but generally most individuals do not know the law unless they have undergone training of the kind offered by IPSEA. Direct ‘straight-from-the-horses-mouth’ type stuff, not what ‘local policy’ states. I tried to get my local forum to undergo training, but it was firmly rejected.

    I think what is quoted above makes it quite clear. Independent Supporters = toe the government line. Don’t challenge & certainly don’t support those who are under huge stress – those going through tribunal. NNPCF need to shout from the rooftops. We cannot have such an unfair & biased system that IS seems to be.

    We cannot also have a system that relies on volunteers. IPSEA are already out there doing that, and are truly independent. Why would anyone believe that IS are?

  7. Ella

    We’ve been trying to get these issues raised since January’s announcement. All the people with the “power” just cover their ears when a parent says something they think is inconvenient. Although the article from NNPCF is welcome I feel it’s weak and too little too late. I’ve put in a lot of unpaid time trying to understand why the LA (who should have minimal involvement anyway) won’t clarify what is happening. PP’s should not have been awarded these contracts without clear PCF involvement. The CDC should have written this more strongly into their application process. Same old same old and it is parents who will continue UNPAID to pick up the slack. More parents should wake up and get involved to help spread the load. Good article from SEN Jungle though, keep telling it how it is.

  8. AnnaGrant

    Very depressing reading.
    If I was a conspiracy theoriser I would say ‘they’ have waited until the term ended to really start the work for the introduction of the new legislation in September, but realistically I believe it has just been left to the last minute.
    The crushing financial constraints on local authorities seem to be eroding their capacity to work with parent carers, or other stakeholders, even though they pay lip service to it.
    In our local SEN parent Carer forum we have seen some of the strategic groups we sit on suspended or disbanded, with no discussion within the groups. Officers are going away to write strategy, unhindered by interfering parents and carers, and to devise terms of reference for new groups. We have been informed we will be contacted when the officers have done their work.
    As a volunteer who puts a lot of time into trying to work with the local authority it is extremely dispiriting, and worrying that the local authority are planning services and expenditure without involvement of parents and carers.

  9. Joolz

    My local PPS told me a while ago IS were going to support PPS’s. Which fits as PPS have got most of the contracts! They explained that existing PPS did not have the capacity to cope with the changes / level of new requests / requirement to expand service (e.g. to take cases from young people, support through to appeal) in the timeframe needed. Why not just give PPS extra money I asked. Because then the Govt would be stuck paying for them long term, this way they can fund IS just for 2 years then stop.

    My concerns:
    PPS are not good on law – they have usually only done an online course. Yes they will get a bit more legal training but thats just the basics it doesn’t prepare you for every case that comes through the door. I worked on SEN advice line as volunteer and having an experienced supervisor / legal go to person for tricky points was crucial. PPS don’t have this resource.

    PPS often too close (often sit physically next to) to LA SEN staff. Its inevitable they get influenced by the office ethos / line of thinking.

    PPS often think local policy is the law, when often its actually unlawful.

    PPS try and work with LA even when they should challenge and advise parents to appeal. Here parents often get told by PPS they won’t win an appeal / get a statutory assessment and parents give up (I ignored this advice and won). PPS & IS should support and empower parents to make decisions, not influence or make the decision for the parent.

    What will happen when IS disagree with PPS officers? You may get a situation where new blood upsets the current ‘line’.

    Its a real shame the money wasn’t given to CAB and law centres who have lost so much funding and who already have the expertise and training to advocate and advise and are impartial and independent. Or used to make legal aid available so people could choose advice.

    Its not the role of a parent forum to make judgments which parents should get help. Parents seeking IS may also want to be part of the forum and may not want committee members to know their personal situations. It could put people off being involved in forums. Many parent forum committee members will know parents needing IS personally through schools or support groups. Our PF only has 200 members and often the same people turn up to events. SEN world is a small world. Parent forums were never intended to pass judgment over other parents. This is just wrong.

    £30m is a vast amount of money for what in most cases is going to be a poorly trained though well meaning hand holder.

  10. StephsTwoGirls

    Wow. I did not see that coming. The NNPCF statement, that is. The utter shambles of a system and wasted millions, yep, saw that coming a mile off. It’s a horrible feeling being powerless to prevent it, and knowing the money is not going where it is needed most – to the children & young people who need support. And yes, to all the parents of SEN children. All of this money could have been invested back into running proper Early Support, which could have helped massively with all of this. I still find it laughable that ‘they’ wanted these parents to take on IS roles on a voluntary basis on top of everything else we deal with – so many of us want to help others through this jungle, but that really takes the biscuit, preying on our goodwill.
    Thanks for the honest and informative update, as always.

  11. Rebecca

    Agree with everything that’s been said. Once again the ridiculous cavalcade of officialdom paying lip service to the needs of our children and revealing through this IS farce, that the fact that we have children with these difficulties is our own personal problem and that society has no obligation provide realistic help.
    I mean you couldn’t make it any plainer than that, asking PCFs to do all ‘ the dirty work for free and with a grateful smile!!!( For that £30 million don’t you know!?)

    The other thing that cracks me up is the assumption that we would be too tired to even notice !!!!!

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