Help
Hi everyone this is my first post and am afraid its a moan sorry, i'm sure thats all i seem to do now though!!!
I wondered if anyone has had similar things happen to them. My name is Rachel and my Husband is Neville we have 2 boys Zak almost 2 and Callum who is 5. Callum has mild left Hemi and was diagnosed at 19 months after a battle with health visitors!! He has minimal physical difficulties namely a left sided weakness which also causes his arm to draw up when running. He is also visually impaired in his right eye and has behavioural problems, (hitting out, kicking, spitting, biting, occasional self abuse, running off, throwing objects and constantly breaking his glasses!) he has sensory difficulties mild learning disabilities and is alsmost unable to concentrate flitting from one thing to another. He is a very hyperactive boy and is always on the go and charging around or jumping!! Taking him out in the community is more often than not an absolute nightmare. He seems unable to accept no and you cannot reason with him! it frustrates me so much as all he seems to do is whine and shout!! We have had no support as family have either not accepted their is a problem or have no desire to help! The healthcare system have also taken up until now to refer him to the behavioural intervention team! He has a peadiatric consultant, OT and we do physio at home 3/4 times per week. They class callum as a child with various difficulties but he has small amounts from many areas.
We applied for DLA last april and was awarded the middle rate care in July 08 based on our claim form and a report from his OT. We were advised to put in a claim for low rate mobility when he was approaching 5 due to the supervision needed when out in the community, which we did. We have just learned (after 15 weeks) that we have been turned down for the mobility and as they looked at the whole claim the have also stopped his DLA care component stating that any parent does what is on his home excerise programme from his OT. I'm sure they forget that we have to do it though otherwise his weakness could get worse! His behaviour is also fine at school so they feel he is able to control it anywhere. Does anyone else have that school/home behaviour difference cause i really can't seem to get my head around that one!!!
Anyway i'm really sorry to go on so much but feel a little better now i have it off my chest! It would be really great to hear other parents experiences.
Rachel xxx
I wondered if anyone has had similar things happen to them. My name is Rachel and my Husband is Neville we have 2 boys Zak almost 2 and Callum who is 5. Callum has mild left Hemi and was diagnosed at 19 months after a battle with health visitors!! He has minimal physical difficulties namely a left sided weakness which also causes his arm to draw up when running. He is also visually impaired in his right eye and has behavioural problems, (hitting out, kicking, spitting, biting, occasional self abuse, running off, throwing objects and constantly breaking his glasses!) he has sensory difficulties mild learning disabilities and is alsmost unable to concentrate flitting from one thing to another. He is a very hyperactive boy and is always on the go and charging around or jumping!! Taking him out in the community is more often than not an absolute nightmare. He seems unable to accept no and you cannot reason with him! it frustrates me so much as all he seems to do is whine and shout!! We have had no support as family have either not accepted their is a problem or have no desire to help! The healthcare system have also taken up until now to refer him to the behavioural intervention team! He has a peadiatric consultant, OT and we do physio at home 3/4 times per week. They class callum as a child with various difficulties but he has small amounts from many areas.
We applied for DLA last april and was awarded the middle rate care in July 08 based on our claim form and a report from his OT. We were advised to put in a claim for low rate mobility when he was approaching 5 due to the supervision needed when out in the community, which we did. We have just learned (after 15 weeks) that we have been turned down for the mobility and as they looked at the whole claim the have also stopped his DLA care component stating that any parent does what is on his home excerise programme from his OT. I'm sure they forget that we have to do it though otherwise his weakness could get worse! His behaviour is also fine at school so they feel he is able to control it anywhere. Does anyone else have that school/home behaviour difference cause i really can't seem to get my head around that one!!!
Anyway i'm really sorry to go on so much but feel a little better now i have it off my chest! It would be really great to hear other parents experiences.
Rachel xxx
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Dla Been Stopped And Behaviour Problems, Help!on Apr 20 2009 09:39 PM
Tell your disability care team that you want to be re-assessed as Callum has worsened. Find out who is head of Children's services in the borough and copy the letter to them. (ring switchboard)Tell them you need respite care ( this could be as simple as paying for one to one swimming lesson's while you have a cup of coffee). Get yourself down to the Doctors and tell them you need anti-depressants. Then get the dose upped again after 3 months. Whether you need them or put them in the bin, these things all count towards your score. Secondly , Tell them Callum does'nt sleep at night and is up 3x for 30min each time. If you put this on a DLA form you will get the higher care component as it counts 3x 30min or 1x 60min + as 24 hour care.
There is a website for Cerebra (institute of the Brain Injured child). Go to the benefits section and use the DLA form as a guide when you appeal your claim. Make sure you write down all day /every day, 24/7 and go by the worst day Callum has had. Keep a copy of all forms and letters sent and recieved. If you get any reports brushing over Callum's difficulties, write back and refuse to accept the misleading report asking that it be changed.
Any problems, don't get into battle with people who can't make a decision, write a letter, copy it to head of services and write at the bottom, PLEASE TREAT THIS AS A FORMAL COMPLAINT.
Things will get better. Go Girl.....
Diane