Like I promised part 2 is here, Later than I planned I know but my memory was triggered by a status on SWAN UK face book group about a carer’s assessment ? part one can be read here https://swanarchie07.wordpress.com/2012/03/14/too-many-assessments-for-what-all-the-crap-that-is-thrown-at-you/
Nothing much has really changed or moved forward BUT NO SURPRISE THERE REALLY.
So I left you with I was talking to my councillors and the talks have happened and meetings have taken place oh and more meetings and this is where I think we are?
Archie’s plan was based on the hours he was already receiving through a direct payment and there for didn’t really reflect the true cost of what we needed to pay for to achieve the positive outcomes in the new plan, so we tried our best with what we had to achieve as many of them as we could. I was influenced to think outside of the box and look at what might make our lives that little bit easier than just traditional care offered through social services. We went through training with experienced people who were commissioned through the local authority. A PATH took place this is a visual plan (positive alternatives together with hope) and from this a written plan was drawn up.
The plan was approved with conditions that my social worker would look at assessing me for nights as well as me accessing the sleep programme offered by the disabled children’s team, I went on this course and also kept a sleep diary, It was agreed by the DCT nurse team member that sleep wasn’t behavioural and it was more of a medical reason to why my son never slept.
The rest of the plan worked well until after the summer holidays of 2011 when I was very ill and in a lot of pain and waiting to be diagnosed. I suffered for 3 months of not knowing what was wrong with me.
I was diagnosed in December 2011 with fibromyalgia after seeing a specialist at the hospital.
I was struggling to do my day-to-day job as well as care for Archie.
In between waiting to see a specialist my social worker had done an amendment to my core assessment and had decided that due to all the (stress going on with me been ill and my husband losing his job and our relationship been a little nonexistent) are you surprised with the shit you but us through, she thought we didn’t warrant nights and if they had been granted then this would put a blanket on the situation ? To my understanding I would say this was being judgemental and wasn’t really sure what she meant by this.
I didn’t agree and would like to complain and take this to the next level please. I Didn’t get anywhere with her manager either and was spoken to in not a very nice manner will leave this to your own imagination. But not long after he left. I then asked to deal with the director of the DCT who passed it back to the new manager and passed back again to my SW supervisor.
My social worker was advised to do another full core assessment another (35 working days) by this time I was given information on fibromyalgia and I passed this onto my SW.
My assessment went on longer than the recommended time scale due to my social worker been in a car accident it took 3 months. I spent hours in meetings with the social worker most of it crying due to lack of sleep pain and stress. I was honest throughout my core assessment about everything my own feelings and our family affairs. I poured my heart and soul out to her and put my trust in her to help us as a family. The results concluding the same no overnight’s so I appealed again and I was told it seemed I was anxious about everything (no shit Sherlock) so they would like to do a child in need meeting with all professionals involved in Archie’s daily care/education/health. This was to take place every 3 months. We have had one and only myself school and social worker turned up I don’t have issues with school.
All this extra stress really wasn’t helping and I am still at a loss to understand why I don’t qualify for nights with all evidence that suggests sleep is an issue for the whole family and also a major factor to my condition. I can’t start to plan for the future, Am I not allowed to be in employment ? having no sleep and suffering with sleep deprivation and not been able to function most days would not go down well in any job, not to mention trying to fit all the appointments in as well as doing all the other jobs you do as a parent.
As a carer I have rights so why are my needs not met within this assessment ? I ask?
I have had previous care’s assessment in 09/010 but wasn’t worth anything really as my social worker kindly told me, it wasn’t a real CA ?
I have asked for reasons and each time I get a different answer, first it was because my core assessment didn’t reflect nights like the support plan did so it needed to be looked at again. I was told in the interim period I was able to spend some of the budget on a babysitter (what positive outcome would this be for Archie he would be in bed) and I would still be up in the night and up early ?
Then I was told the excuse of mine and the husband’s relationship wasn’t very stable so I need to try resolve some of our issues first and would we accept marriage guidance I nearly punched someone ( judgemental again, patronising and assuming our marriage had problems) bloody rude. Dont ever ASSUME as this makes an ASS out of U and ME.
Next came the excuse of what positive outcomes would my Archie get from having overnight’s
Then it was let’s see if things improve when you have been on the sleep programme, next was do a sleep diary so we can see what his pattern is really like (as if I was lying yes I love the added stress this is causing me) bloody muppet’s some people.
Then came see how he goes with the new sleep medicines.
Archie’s new consultant asked if we had help with over night’s so I sat and explained he wanted to support me in this so wrote to my social worker. FAT LOT A GOOD IT MADE.
In the mean time he decided to order a sleep deprived EEG on Archie and this came back abnormal and Archie is now on medication for epilepsy. His consultant wanted to see if this is why he has never slept through and causing him to have sleeping issues, This is still under review as we have only been on medication 6 weeks.
Then just recently after more meetings with the councillors and them also been baffled by the way the DCT have been treating my case, I phoned the SW about Archie’s care package again.
I was told things will be better when we move because he will have a room with a safe bed and because Archie’s sleep is not behavioural we can leave him while we sleep, Not sure if I understand this or I miss heard this surely this is neglect ?
The last time I was visited by my SW I was also told that I no longer qualify for a social worker within the DCT and I am transferring onto the family support team ? And if I wanted my own needs to be addressed then I should contact Adult social care?
The issue above is that services are still seeing the budget as meeting identified needs as opposed to outcomes
The outcome is ‘Getting the rest we need as parents to enable us to give Archie the love, care and attention he needs and to provide a healthy home for him to grow up in’
Decisions (like those made by me and my circle) about how the money is used alongside all the other resources (wealth) around are focused on the above outcome
There is no question about whether Archie needs overnight’s or not – this is a decision taken by myself and my circle as we feel this is a good way of delivering the above outcome (along with building relationships with extended family and social networks).
An assessment would not say ‘needs’ or ‘doesn’t need’ overnight stays – an assessment would say ‘there are big problems at home caused by Archie’s sleeplessness’ – the care plan (the old world) and in fact does say this, this would then pinpoint services to address this need – what is happening is (common I’m afraid) but the social worker is treating the assessment as a plan as well.
My take here is that things from the old and the new have got all muddled up
1. Archie is eligible for support from Disabled Children’s Team (fact)
2. our family with support from Forum have volunteered to take part in the local authorities IB pilot, and we are also a pathfinder site for the new reforms to SEN (support and aspirations)
3. our family have been given an indicative allocation of £xxxx
4. We have followed the process and put together a plan which meets the needs as they see them (with support it would be hoped from positive, motivated and knowledgeable social workers) NOT
5. The plan sets out how the money will be used to ‘make sure mum and dad get the rest they need’
6. We have made efficient use of the money available along with other resources are not simply getting me and dad some rest but building relationships with others in the family etc – all this is great stuff for a child of four at the time it took place with additional support needs.
The muddle comes with the feedback from panel – they are prescribing services (baby sitting) and how much money can be used – this isn’t self-directed support but old style service land
Not sure what support planning approach they think they are using ? but it’s not the one I had training on and the one they signed up to with in-control, but if it has ECM outcomes in it then can’t I see how assessment doesn’t have same outcomes. ECM outcomes should incorporate any (ECM = Every Child Matters – Stay Safe, Be Healthy, Make a Positive Contribution, Enjoy and Achieve and Achieve Economic Well Being)
The message I have is
THIS IS A PILOT WHICH IS FOCUSED ON GIVING FAMILIES CONTROL OF THEIR CHILD’S PERSONAL BUDGET – it won’t work if the children’s service retains control and prescribes how the PB has to be used – this is not the approach in any of the DfE pilots, or any of the In Control sites I have read about and are already up and running.
Restrictions and prescriptions will only lead to higher cost packages, resources being used less efficiently and poorer outcomes for children and young people in the long run thus costing the state way more money.
So here are my questions and thoughts for tomorrows meeting with the director of the disabled childrens/social care and the manager of the DCT.
For the last 18mths I have followed each stage of the DCT’s suggestions around the sleep issues.
During this time I have had my own diagnosis of ill health which has had a marked effect on my caring role (this also includes care of my sister and father).
Also, Archie has been diagnosed with epilepsy and this with the sleep issues is being investigated.
As it is looking like we will not be moving over the next 6 months please can you give me a clear explanation of why Archie is not entitled to overnight care?
Queastion about Family support.
Can you also give me a clear explanation if there is a new criteria for accessing a social worker and social care? If so how have parents been involved in the changes and how have their views been taken into consideration? Are these changes thus official and if so can we see the consultation documents.
As you will know it may be unlawful to make any changes without consultation.
The eligibility criteria must ignore what support I already have. It must focus on understanding the need itself by thinking about what may happen if Archie does not have the support
If our council has changed its eligibility criteria then they need to reassess. They must decide whether I come into the new criteria before changing the support over to family support. Personally I am not objecting to the fact that I am moving over to family support but I am objecting to the processes and that my own issues have not resolved or met yet, and can family support really deal with social care packages when truth be told social workers can’t.
When life gives you something alittle different 