Friday, 20 January 2012

Melatonin and sleep.

When J was a baby I had the bizarre notion that I would not give him medication unless absolutely necessary. It is a measure of how far I have fallen from my principles that I bit the paediatrician's hand off when he suggested we give a trial to Melatonin in order to see if this would help with J's sleep issues.

J can be awake until the wee small hours with ease, he finds it extremely hard to settle down at night and we can still be going at 01.30am on a bad night. A recent holiday with his Dad and grandparents saw an even later 2am before he fell asleep. Not surprisingly I am often exhausted - not least because I need to be awake too as J also LOVES food and thinks nothing of climbing onto work surfaces in order to reach any goodies which might be on the top shelves. The idea of an overtired kid with balance issues (dyspraxia) climbing any height does not bear thinking about. I am amazed that we are not regular attenders of them local A+E department.

So we now have Melatonin 2mgs for J to take an hour before he falls asleep and although it's early days it seems helpful. The first night J took a tablet he fell asleep next to me at 8.45pm and I was in shock, J was under 2 the last time he fell asleep this early. I literally did not know what to do with myself and phoned friends and relatives...."he's asleep...can you believe it"? No they could not either....

So since that first night it has been hit and miss and very dependent on how tired J is that evening. He is still waking to bedwetting but is settling down almost as soon as he is changed. The latest night we have had since he started Melatonin is 00.15am - a vast improvement upon 2am!
So I am going to continue, I have been warned that he cannot take this drug forever and that it's effects may wear off over time but for now I am going to enjoy it and love the idea that on some nights J is getting adequate sleep.

Tuesday, 17 January 2012

Disability Living Allowance and the Welfare Reform.

Like many other parents of children with a disability I am anxiously watching the news with regard to the proposed benefit reforms and the plan to replace DLA.
DLA is not an "out of work" benefit, it is instead a benefit designed to help with the costs of coping with a disability either your own or a dependent's.  I have claimed it since April 2009, just after J was diagnosed with ASD. I knew about DLA but had never considered claiming it for J although it can be claimed even if there is no diagnosis. My decision to claim came from the paediatrician who advised I do so as there would be cost implications for J both now in the future. I applied and was awarded Middle Rate Care to reflect the fact he needs frequent support during the day and Lower Rate Mobility to reflect his need for supervision by roads - this means I recieve £267 a month for J - a massive help as I had decreased my work hours several months before in order to support J who was struggling in school and at home. In addition I also recieve a top up payment to my tax credit - all in all I was better off by nearly £450 a month. This allowed me to attend various support groups with J and a special needs centre nearby which ran a "stay and play" group.

So what does the DLA and tax credit pay for?

In my house it simply goes into the pot with my salary to pay the rent, the council tax, the electricity, the gas and to fund extra activities for J.  It means I can be around for him to offer him the additional support he needs, he has one to one support in school and finds social situations confusing, he would need the same support in an out of school care setting.

I spend time sorting out social confusions with him, I do homework with him and help him with maths, literacy and other topics. J has mild to moderate learning difficulties, he is not achieving on a par with his peers, only since he started taking medication for his ADHD has he been able to make massive progress in reading - it is a joy to hear him read to me with real meaning and comprehension.

The DLA form is massive - a 40 page form which wants to know everything about the disabled person in miniscule detail.  Can they walk, can they talk, do they need supervision, can the disabled person wash and dress themselves or do they need help? What help does the disabled person need?  Is it simply supervision and routine or do they need total support? How long does this take in minutes, how many times per day? What about night time? Does the person need support and supervision at night? Who is the GP, who is the Consultant, who can DWP talk to if needed? Can they have the medical records?

The form is so complex that organisations such as the CAB devote time to helping claimants complete the form. J's initial award ends in March this year and the CAB have just help me complete a new one - due to J's sleeping issues and night problems such as bedwetting the advisor said that I should be receiving Higher Rate Care which is a measure of how bizarre the current reforms are. If I receive Higher Rate Care I will be immune from the cuts as carer of "one of the most disabled in society". In fact Higher Rate Care simply reflects the claimants input overnight - a child could be severely physically disabled and yet sleep all night with no issues making them non-eligible for Higher Rate Care - it's utter madness.

So the cuts, ah yes the cuts! As of April 2012, if the reforms go through as the Government wants them to then those on Middle Rate Care will no longer recieve the current level of tax credit top up, it will halve making the average family caring for a disabled child just over £1440 a year worse off. Those receiving Higher Rate Care will see their level of top up to the tax credit increase - remember that to qualify for Higher Rate Care the child simply needs to have supervision and care requirements at night time. In my case it's the fact that J can keep going until 1-2am in the morning and active until about 30 mins before - yet this could make him elgible for Higher Rate Care payments and deemed one of the "most disabled in our society".

There have been massive protests about the reforms as applied to disabled people and finally it appears the protests are reaching the Government - and they are not happy.  They are hitting back in turn but it's definitely got them talking - even if I largely disagree with all they say as do many others.

I currently await the response to my latest application for DLA on behalf of J and this time if they award less than Higher Rate for the Care component I will be asking them to justify their decision in writing - under current guidelines J meets all the requirements. In the meantime I will keep writing to my MP and pointing out the issues with the reforms. DLA definitely NEEDS reform - but not in this way and the Government need to return to the table and talk to all the disability groups whose comments have been falling on deaf ears for far too long.