Karl Phillips’ 12 year old son Owen suffers from severe autism, ADHD, severe learning disability and behavioural problems and receives support from Charles House. He has been instrumental in organising the campaign to Save Charles House. We asked him for his comments on the document by Eleanor Brazil we posted about today and he sent us the following frank reaction:
Yet again Birmingham City Council shows its true colours after smiling to our faces and as soon as our backs turned plunging the knife right between the shoulder blades. It was only a few short days ago Cllr Les Lawrence met with parents of Severely Disabled children who use Charles House Respite Care Home, he said we should be hopeful about its future, how he knows foster carers are unsuitable for the our children because of the level of their needs, has congratulated all the staff for their excellent achievement of a 3rd Outstanding in all areas from OFSTED and recognises how important the service they provide is to our families.
Only a few weeks ago he told me that disabled respite provision was not being threatened and he was looking at replacing long-term residential provision where it was failing or where the buildings were unsatisfactory with family based provision such as foster carers.
But now they talk about “changing eligibility criteria” as if it not hard enough getting any assistance from Social Care in Birmingham and getting the right provision able to meet your disabled child’s needs is downright impossible. What’s the new criteria going to be, they’ll only offer services if you’re standing on top of a multi storey car park threatening to jump, yes I’m being sarcastic but many families are close to breaking point because of Social “DON’T” Care failing them.
Parents have “experienced considerable difficulty in short breaks provision”, make that any suitable provision if your child is disabled with complex needs, it took us 2 complaints procedures and 5 years of fighting Social Care to get a referral to Charles House for my severely disabled son. They wanted us to use totally unsuitable family based services they talk of now, but when I interviewed carers they recommended as specialists they had no idea on how to deal with my sons needs to the point of being horrified when I told them of his problems. For the majority of families like ours you either have to prove all their choices unsuitable for your child’s needs or be at the point of being in crisis, although one usually follows the other with Social Care management and resource panels blocking access to specialist provision such as Charles House.
Talk about “residential respite homes being under-used” is insulting as in our case and many more Social Care has gone out of its way to deter and block families from accessing these respite services. I have been a part of short breaks/respite consultations in the past getting other parents views that have mirrored my own, I recall one parent telling me at a consultation about 2 years ago their social worker was told not to refer families to Charles House as it was closing because it was under-used but that day there were 5 families including mine fighting for referrals to Charles House and more that were not even told about residential respite.
So to be blunt what they really mean is we want to close specialist residential respite homes with years of experience & outstanding track records that may cost a little bit more but deliver outstanding positive outcomes for the most complex vulnerable disabled children and families. To be replaced with family based support and carers which will be cheaper in the short term with no training or the ability to care for children with complex disability needs in homes totally unsuitable and when these children & families are in crisis they will have to use specialist respite homes outside of Birmingham that will cost more, as in the case of adult services.
One last thing, I was told that in an email I was accused of exaggerating in an open letter to Eleanor Brazil by a senior councillor but if people like him could experience a day in our lives he would realise I was holding back on what we have to do to care for and fight for our children’s needs.