Diskenetic cerebal palsy and hypermobility

(3 Posts)
FlissyBmum Wed 26-Jul-17 10:56:00

My little girl has been diagnosed with Diskenetic cerebal palsy and hypermobility. I have been advised to apply for Dla which I had help filling in the forms. She has started walking. Although falls a lot and can't walk far. She's only 26 months but I would like to apply for any help possible for her. I am aware of carers allowance. Has anyone been awarded a blue badge or what are the chances of higher mobility when she's three?. I guess we have to wait and see how she progresses. We had to go down the private route with my husbands bupa from work to get a diagnosis so early . At least now it seems to be opening doors for regular physio. We are going down the physio shorts and orthotics route at the moment as they seem reluctant to supply Pedro boots or Afos yet. I was also wondering about applying for a grant from the council for a downstairs toilet as she can't go up and downstairs. But as she's so little everything seems to be delayed until the magical age of three. Sorry for the ramble!!.

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Olympiathequeen Wed 26-Jul-17 22:10:14

DS (also dyskinetic but not independently mobile) had piedros at 2 supplied so ask again. He didn't get in with AFOs at all so we gave up on them. If your DD is walking now I don't see her getting higher rate mobility as the criteria is unable to walk at all or virtually unable to walk. The blue badge is a different matter and applying to your LA may get it with your diagnosis. May have to wait til she's three as plenty of two year olds still use normal buggies, but every council seems to have different rules. I'm not sure about carers allowance. The disabled facilities grant won't kick in yet as you saywe had ours done age 6 so I'm not sure of the official age. Each council ohould have a SN advisor called a SEND (?) who can give you all the advice or contact Cerebra or scope for help. Dla middle rate should apply to you and also higher rate if she needs help in the night. Again doesn't kick in yet due to her young age,

FlissyBmum Thu 27-Jul-17 08:52:11

Many thanks for the reply. I wondered what a SEND was?. I shall definately contact the council. My little one wakes a lot in the night. The Peadiatrician thinks that it is to do with pains and spasms in her legs. They seem almost restless. I shall ask about the boots. They seem very reluctant to offer a lot at the moment. I shall be grateful if we go the boots rather than Afos. She screams and panics at every appointment now. Ever since she was measured for physio shorts. So the idea of putting her in a cast doesn't seem a good idea.

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