Hi its been so long, where has the time gone, I won’t bore you as I have a headache just thinking about it. But here is a little !!!
The last few weeks things have been a little crazy with the house move and my poor father been in and out of hospital since Christmas.
Now we have moved things should improve? or so I was told from our last contact we had with a social worker (back in October 2012) her words were “once you move Archie’s sleep issues will be resolved” I asked my self how?
So yes we are in the new house and Archie has a big enough room to do any adaptations too it, and yes having the lift is amazing and also having a staircase wide enough and not steep Archie can practise them and is doing very well with this. We are only 7 weeks in to the house move and sleep is now worse, of course it would be because its new surroundings, But yesterday we had the arrival of a new bed that doubles up as a changing table and moves up and down. we had the OT come out and talk about the options of padding his room and things are going ahead with that, great finally after 4 years, wouldn’t do it in the old house because we were moving to a purpose-built fully adaptable home didn’t think it would take 4 years to get in though.
In the meantime while waiting for the house to be built by our local housing association we went through a pilot for individual budgets in social care and due to our difficulties with sleep I asked if we could use the allocated hours we were already receiving as a (direct payment to spend on a short breaks) could be used on some designated over nights.
The answer was no ! I have written other posts about this http://wp.me/p28kuB-6P
We are still waiting answers, Today I received a few calls and still no one has answers to why I can’t spend it on respite. Then next phone call was from the admin lady at the complaints department telling me she had received a e-mail asking for up date not sure who was asking her but I didn’t like what she told me next, that my stage 2 complaint I started in December 2012 against the social care was again delayed due to staff redundancies and no services managers available to review the reports (judicate review) that had been filed. If you are not aware the guidance is 25 working days start to finish but not in my case its been 21 weeks, I am not allowed to see the report until a service manager has had time to respond, nor can I go to stage 3 until I receive the report. With all this going on and no social worker or key worker things started to get hard I was juggling been a parent, a carer, an advocate and a keyworker and all my time is taken up with phone calls, e-mails, meetings, my work as a parent went on the back burn and I don’t mean I neglected them so they became “AT RISK”. I just meant the everyday things you do as a parent, and the bits like having fun, days out, the cuddles on the sofa, instead any spare time I get its spent reading, planning, doing accounts for the PAs I employ or trying to even find a PA the therapy, skilling myself up in areas that would help me understand the systems, and the law, I often find myself up against. I ask whether the new reforms is all it’s cracked up to be right now I feel they are setting families up to fail. personalization maybe on the governments agenda but the local authority in my area thought they were ready and at one point I would have said yes they were , I played a great part in parent participation and sat on the steering groups took part in helping the LA apply for pathfinder status ( and we are one) how ever all the people who were the driving force behind moving forward have now either retired or made redundant or moved onto other areas and jobs, so what now I really don’t know, I am scared because for 4 years these people have worked hard , I have worked hard engaging in the local parent forum working in partnership with services and building my skills and resilience and now today I have been told personal budgets isn’t happening anymore it was a pilot and it’s too complicated so we aren’t doing them.
I ask myself why I bothered like I have asked myself so many times. I believe this is the way forward I do I really do especially to achieve better outcomes for families and disabled children but not at the expense of a persons mental health, or even that of a sibling that feels so neglected that his mums time is spent so much fighting battles.
Yes we have moved to a house that meets Archie’s needs now and can do in the future but does it meet my needs and my other childs needs maybe it doesn’t. We now have a new fight because this house is further away from Archie’s special school and transport wont take him anymore to school because we have moved closer to the other primary special school. Both schools can meet his educational needs but my Archie has been at his present school part-time since September 2009 and then full-time since January 2010 after a tribunal said he needed fulltime education in a setting with 70% of his day with a 1-1 otherwise he would regress.
Where does this fit on the EHCP and getting ready for the new reforms and giving parents control, the reasons behind their decisions on transport is not good use of resources, that the extra journey time could have significant impact on Archie.
I ask what about the significant impact on moving schools, friendships, teachers, surroundings. Not to forget that after nearly 4 years in this setting he is only just making progress especially with his eye contact, and communication this you can’t put a price on. The only reason for not giving transport is to save money and I am sorry this just isn’t good enough. This fight I believe will continue because in the long run this could cost 3 times more if my son moves settings and then starts to present with challenging behaviour, he is happy, he is making progress, he has friends is this not what an ordinary life is about and the whole reason behind the new reforms ( http://webarchive.nationalarchives.gov.uk/20130401151715/https://www.education.gov.uk/publications/eOrderingDownload/Green-Paper-SEN.pdf .
