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Help me please! - Carers UK Forum

Help me please!

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Hi Guys,
I'm so grateful to have finally found people who may just understand what I'm going through.
I'm a mum with additional needs and have a seven year old who has quadriplegic cerebral palsy and complex epilepsy, she is pushed in a chair as she can only use a Kaye walker supervised for very short distances and can not stand or sit unaided. I'm also a single parent after fleeing a DV relationship and have very few friends and no family for support as well as 4children who all have additional needs the youngest just 7months old. I approached our local social services team not for respite, but for a list of support groups and to ask about adaptions to our home, all deemed necessary by my daughters consultant and Occupational therapist (a bath seat, a ramp to the front door, a few grab rails and a Stair lift) so you can imagine how shocked I was when the manager of children's with disabilities informed me that my child is not disabled :?: :shock: Obviously this puzzled me as she receives top rate Dla for both care and mobility so when I challenged her I was then told "as Monica has no learning difficulty of moderate or above need she does not meet the criteria for CWD involvement." I couldn't believe it so I decided to take it further and raised it with our OT and Consultant and they made the request in writing. We were finally accepted for an initial assessment by CWD after 18months of fighting to be told we have to wait another two years for a visit to begin assessing her needs which doesn't help me considering she's due an operation within two months which will render her completely immobile.
I've had enough! My daughter recently dislocated her knee and popped the tendons trying to bum shuffle down the stairs in our house as our only toilet is downstairs and her bedroom is upstairs, she has fallen countless times trying to gain some level of independence in this house which is privately rented as I don't meet the criteria for social housing because I havent lived here for three years and I can't afford to move elsewhere. I'm exhausted of trying to do this all alone and feel at times staying with my ex partner would have been an easier option. I wonder if anyone else has had these sorts of dealings with social services and what the law is on children with disabilities. Any help is welcome thanks, Liz
I've sent you a PM, hon!
Hi Elizabeth
Welcome to the forum. You sound as though you have far too much on your plate to deal with and a very inadequate Childrens Department in SS. I'm wondering if perhaps an advocate might be able to help you take on the officials and fight your corner on your behalf? Sorry I don't really know what else to suggest as I have no experience in child care. I am sure others will be along who can offer some more advice soon.
Thanks for the reply guys, I do have an advocate who will come to appointments with me unfortunately as children with additional needs, social services and housing is not her area of expertise she said there's not much she can do other than be an shoulder to cry on.
When your daughter is in hospital they should arrange an OT visit to the home and should not let her out until the home is SAFE for her. In the meantime, I would suggest getting a caravan Porta Potti for her bedroom, and after discharge make sure the OT gives you a toilet frame to go round it. House adaptations are called "Disabled Facilities Grants" and are the responsibility of the local council NOT Social Services.