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Archive for the ‘Grants etc’ Category

If you have a child aged 1-16 years old with a ‘neurological, brain-related condition’ you might be eligible to receive a £500 voucher from the charity Cerebra to fund private speech and language therapy. Your child must not have received speech therapy in the previous six months.

Further details of the scheme can be found on the Cerebra website.

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We’re quite lucky in that Archie was relatively easy to toilet train. My Mum made it her goal when he was 4 or 5. Joseph was about 2 at the time and I was pregnant with Louis so I was happy to hand that job over. It took quite a long time – we had to try and keep him on the toilet until something happened so it was a bit hit and miss but we got there in the end.

We were fortunate that Archie had enough control over his muscles and enough understanding that toilet training was achievable, but it fairly often isn’t for children with severe autism or learning disabilities. In this case the PCT should provide incontinence products. Many PCT’s have imposed arbitrary limits on the number of nappies allowed each day leaving families short . You generally can’t just pop down to your local supermarket for larger nappies and they’re very expensive.

This problem was brought to David Cameron’s attention by during a pre-election chat on Mumsnet where he promised to look into the issue. Meanwhile Mumsnet joined forces with Every Disabled Child Matters to launch a campaign calling for an abolition to ceiling limits on nappies set by PCT’s.

Mid August there was some success. The Secretary of State for Health wrote to the Chief Executive of the NHS asking him to tell PCT’s that: ‘Pads (nappies) should be provided in quantities appropriate to the individual’s continence needs. Arbitrary ceilings are inappropriate’.

Further details can be found on the Every Disabled Child Matters website.

I heard from a friend earlier this week that our PCT are still setting limits so I emailed the continence service yesterday asking them to confirm that they are aware of this guidance. I will post the response here when it’s received.

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brokenwindowSafety is of course a big issue when you have a child with autism. We have 3 locks on the front door, internal door locks, window locks, 8 ft fences around the garden and so on and so forth.

 

For a while we had a problem with windows being broken – from headbutting. Frayed nerves all round – well mine were frayed, my son was fairly oblivious to the danger. Our windows were very old and needed to be replaced at huge cost. It wasn’t an easy process and it took a long time and several complaints from me but we were able to get some funding from a Disabled Facilities Grant.  

 

These are not means tested for children. To apply you need to ask your social worker for a referral to an occupational therapist. He or she will visit and carry out and assessment. It was worth the time and hassle – it meant we could get the windows double gazed and they are now much safer. 

 

We’ve had to try and find various other safety solutions in the past. For a while I thought about starting a social enterprise that would source, develop and supply safety products for people with autism. In the meantime I came across this site, BabySecurity which looks to have a pretty huge range. OK it’s aimed at babies  and toddlers so some of the safety devices on there aren’t going to last 5 minutes faced with our kids, but it does look a good place to start. I could have done with the window film. 

 

They also have child trackers. Something that will be the subject of a post in the not too distant future- we have a camping trip coming up……

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Council Tax Relief

Just a quick one that occurred to me when in conversation with someone just now. If you, or someone who lives  with you needs a room in your house to meet special needs arising from a permanent disability you may be entitled to a reduction in your council tax liability (by one band). We qualify as we have one room that is used for Archie’s therapy. It was easy to apply, someone from the council visited to check the room, and we obtained the discount. It lowered our council tax bill by just over £100 a year. You need to apply via your local council. Ours appears to let you do it online.

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DLA & Mobility

dreamstime_1612636I’ve just been to renew my Motability car. It was very easy and quick. The same can’t quite be said of applying for mobility in the first place.

 We first applied for DLA when Archie was 3. The form was and is, as many will happily tell you, shocking. Pages and pages of the strangest questions. At the time Archie was being assessed and we were able to get a lot of help filling in the form from a social worker. After submitting that claim we received higher rate care with no mobility. This was probably a fair decision; as a three year old Archie was fairly easy to handle in public although he required constant attention. It was when he reached the age of 5 that things began to get more difficult, and it was after he pulled himself free from my hand and ran straight in front of a car that I decided I needed a blue badge so we could use disabled parking bays. Looking into it further I found that if we were awarded higher rate mobility we would automatically qualify for a blue badge. So I telephoned the DLA ‘helpline’. A misnomer if ever there was one. I was told by an increasingly stroppy operator that there was ‘no way’ Archie would be able to receive mobility as you had to be ‘unable to walk’. Luckily I had already done my research and knew that this information was incorrect. So I requested that the forms were sent out anyway. ‘You won’t get it’ were the final words.

OK so I knew it was going to be tricky! However, the information I needed was all out there and freely accessible via the NAS website . In fact Archie passes the tests for higher rate mobility quite easily as he would score below 55 on an IQ test (untestable). Rather than repeat all the information here, have a good look at the NAS link. It was a great help. In the application I mentioned that Archie has no sense of danger, that his lack of understanding of language means he cannot understand shouted instructions, that he has no road sense, that he requires someone to hold onto him the entire time we are near roads, and that he  wears a safety belt when we are walking near traffic. Finally I asked the decision maker to consider the Megarry (1999) case when considering my application. This case, concerning an autistic child went to the Court of Appeal (Megarry v Chief Adjudication Officer 29.10.99) and found that the definition of ‘severe impairment of intelligence’ should not be defined exclusively by an IQ score.

I sent the  application off, crossed my fingers and we were awarded higher rate mobility. We then applied for the blue badge, and ordered a Motability car. These have made life considerably easier. The moral of this story being dont believe everything the DLA ‘helpline’ tells you, and if you think your child qualifies do your research, get some help with the forms and fill them in.

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I didn’t get much sleep last night. For once this was nothing to do with Archie who appeared at a very reasonable 6am. It was his youngest brother Louis who woke up. But anyway, my somewhat befuddled state today got me thinking about sleep problems. Apparently up to 89% of children with autism and 86% of children with learning difficulties  experience sleep problems (see reference); I can well believe it.

 A product that I have always thought looks excellent for those struggling with severe sleep problems is the Safespace. It’s a room, within a room. Custom built it provides a safe area for children with challenging behaviours. It comes with some enthusiastic recommendations from carers. It is expensive but is the sort of product that charities are often willing to fund, or alternatively it could  be funded through a Disabled Facilities Grant (more on them another day, but basically they’re local authority grants, and are not means tested for children). We looked into getting a Safespace to stop Archie climbing up to lean against his window, as well as to improve his sleep. Although we don’t have one yet, our coucil were open to the idea of funding one.

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Yesterday we went shoe shopping. This is nowhere near the horror it used to be. Archie used to kick the shop assistants as soon as they tried to measure his feet and it needed one person to try and hold his leg steady. When Archie was a pre-schooler I used to travel to Totnes for Conker shoes just because the manager was so understanding. Then, for a while a friend’s sister who owns a nearby Clarkes shoe shop would make home visits to us. We were very grateful. I am however, a  believer in trying to teach the normal everyday things if at all possible. So back to the shoe shops we went.

Shoe shopping, may be much easier than it was, but it still requires 2 people.Not because of kicking but because Archie can’t wait so he runs off (usually into the stock room). It’s a whole lot easier if one person can concentrate on him, whilst the other talks to the shop assistant.

Which brings me onto direct payments. Direct payments have made things like shoe shopping a whole lot easier for us. Put simply direct payments are cash payments made by social services to either disabled people themselves, or, in the case of children their carers in lieu of services. So we were assessed and it was agreed that Archie was entitled to receive services, but instead of providing us with any services we were given the cash equivalent instead. There are some restrictions on how this money can be spent, but we use it to pay for help so we can take the boys swimming, for help during school holidays, for people to play with Archie for an hour after school and for him to go to a childminder on occasional Sundays so his brothers can be taken out somewhere for the day. They have given us a great deal of flexibility and the opportunity to tailor the help we receive to meet our needs.

There are some downsides. There’s a lot of paperwork, but we get excellent support with that from an independent organisation. I can pass my timesheets, cheque books and bank statements onto one of the support workers and she sorts it all out for me. You also have to pay for any advertising you need, but I’ve found that an advert pinned to the local University Psychology department noticeboard produced many excellent candidates.

Some local authorities have been slow to embrace direct payments and I sometimes hear of people being told strange things such as there being no more money available for direct payments in that financial year. This is absolutely wrong. It is now mandatory for local authorities to offer direct payments. If social services offer your child access to a service, and you request direct payments instead, they have to provide them.

© Photographer: Armand Upton | Agency: Dreamstime.com


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