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University with a Disability

University with a Disability

When my son was diagnosed with Asperger’s Syndrome at aged 10 I never in a million years thought that I would be having to help him think about University. But he has come on so far in that time it really has been amazing. I shall not embarrass him by listing all the things he couldn’t do – I am sure if you are reading this you may already know yourself. But what now? Will he really be able to cope at University? Will he eaten enough, clean himself enough, not get into trouble with other people? Are these not the thoughts of any teenager about to fly the nest – is he really any different anymore?

University with a Disability

The following information are things that I have gathered about disability in relation to my son with Asperger’s syndrome; there may be relevant information and links for other disabilities but obviously there is more to think about and this post may only be a starting point.

Going to University with Special Needs – UCAS

The first hurdle we are struggling with is UCAS. My husband and I did not go through UCAS when going to University it is our first time dealing with them. Of course communication is the first big issue here. I really am not sure whether our son is not being told the right information or not at all. He is not doing General Studies (timetable clash) and according to him there does not appear to be any way they are making up the fact that he is missing what they are being taught about UCAS forms. UCAS is the Universities and Colleges admissions services – basically he will need to fill out one of their forms saying which Universities he wants to go to. The deadline for UCAS is January 15th 2015 – my son just thinks I am being a pushy organised parent.

UCAS can be done online, and saved and tracked. There’s a 10 digit personal ID number – and this can be shared with people who help fill out the form. Some of the form can also be shared with the student finance company. Tuition fees loan can be borrowed regardless of family income/situation. 5 choices can be made. It costs £12 to apply for one course and £23 for two or more.

This will include a Personal Statement – that is talking about himself, selling himself telling the places why they should pick him to go on their course over anyone else. It has to be a minimum of 1,000 characters This in itself is proving difficult as it is hard to get him to do anything to put on the statement, and also because things are so black and white he does not understand the whole, because I can do x then y. For example, when applying for a job as a lifeguard he put that he could swim a length under water and knew how to deal with children. To him these were the qualities he had to be a lifeguard. They said this wasn’t enough. We then talked about how he was studying science and was therefore good at observing hazards – he did not see how that was related to being a lifeguard because the hazards were not the same.

Universities must make reasonable adjustments to account for the disability. Disclosing the disability can show evidence of character and achievement (see why you should disclose that you have a disability). This may be something like learning the ability to manage money, or that the disabled person has learnt to cook their own meals. This shows determination and using skills to sort things out.

Deciding on a University

The amount paid back each month for a Student Loan will be the same whether the tuition fees are 6,000 as they are 9,000 (a year). Institutions that charge more than 6,000 in tuition fees have to put in place measures to help students from poorer backgrounds. Waivers and Bursaries – if there’s an option then it is better to have the Bursary as it is more likely to be higher and meet the costs of the basic needs. UCAS has a guide on helping disabled students find the right course for them.

Students with Asperger’s are likely more difficulties socially and with life skills. These may include understanding and processing language, sensory issues, diet/fussy eaters, working in groups, struggle with changes to routines, independent study, taking things literally, understanding jokes, and so on. So it is pleasing to hear that several Universities are offering summer schools to help those with Asperger’s adapt (including Birmingham, Bath, Cambridge and Aberystwyth.

Open Days

It is best to attend the Institutions before putting them down on the form. Have a look on their websites for when they are holding their open days. Some will require you to book them in advanced, others you just turn up on the day.

The Course:Selecting the place of study will depend on what you want to study. Check out the league tables to see which are the highest rated, and what others are saying about it. Think about whether future employers will be influenced by the institution choice. Depending on the course some careers are determined by health and have rules called ‘fitness to practice’ set by professional bodies to ensure people can do the job – this does not mean disabled people are automatically ruled out though. Does the course require an admission test to be sat? The disability officer (see below) can help with this. Tutors can provide advice on the course options -what mix of lectures, number of assignments, seminars there are.

The Requirements: Make sure you have enough UCAS points to secure a place, and see what typically they accept. Just because there isn’t enough UCAS points does not mean that a place cannot be obtained. If the offers received are not taken or none are given then students can go through Extra. From February 24th courses with vacancies can be applied for, and the personal statement can be amended. Then if no offers in June then they can go through clearing.

The Location: Is the place near to home. Therefore, all the support of living at home is still available. If moving away think about the accommodation and any additional difficulties that may need extra help.

The Support: Each University will have a student support or Disability Officer. Speak with them to determine what additional help can be provided. They will be able to advise you on whether they could provide support/help/advice to meet needs. This might be just someone to meet with once a week to talk about academic/care/financial needs – so have a think about what it is that needs additional support. If contact is made before the open day then it gives the disability officer a chance to find other disabled students wanting to do the same course, and/or those already on the course to be able to meet up with. I think this also will give an indication as to what level of support the disability officer is likely to provide. This may give an insight into other difficulties that may be incurred that had not been thought of. Social services can also be involved to help with personal care needs.

Financial help for Disabled Students

All students are able to apply for loans for tuition and living costs. On top of this there is the Disabled Students Allowance –  The support depends on individual needs and not income. It’s paid on top of other student financial income and does not have to be repaid. This can be up to a maximum of £27, 678 for the academic year 2015-2016 (most students get less). They do not cover disabled costs that would be incurred if not attending the course, or that any student may have. Things covered would include specialist equipment, non-medical helpers, extra helpers, and costs related to the course/disability. Cuts have been proposed for 2015 that DSA will be only be given for specific learning difficulties if their needs are considered complex. It will no longer pay for standard computers for disabled students or note-takers and learning mentors.

The University will also have a hardship fund – for those experiencing financial hardship – one of the examples is if the student is disabled.

Other Sources of help for Disabled Students

Skill 

Disabled students helpline

This is, of course, lots more to consider such as insurance, helping them become independent (cooking/budget, etc), accommodation etc. If anyone has any support information on going to University then I would really appreciate it – disability or non-disability related. And if you or your child are thinking about it then the very best of luck to them.

This is NOT a sponsored post.

he is disabled

He is Disabled

Being reminded that he is disabled

I think the main problem I am having with deciding whether to hold our son back at school a year or not is that it means accepting there’s something wrong not quite right with him. Funny as we all know he is disabled, he gets disability money and has full-time one-to-one support at school. It is easy to compare him to others with disabilities and think that the term really does not apply to him. He is so behind his peers in so many areas, but yet he’s just our son. Sometimes it’s easy to think that it is me with the “problem” – not giving him enough attention, bad parenting, I do not have the patience. I would rather those things be true and strive to help him as much as I can. But the reality of it is it is him and the fear that he may never develop further is frightening.

he is disabled

Pushing all these fears away and just being positive not thinking that he is disabled really helps with day to day life. So he wets himself and doesn’t sleep at night – lots of children do that at aged 5, he is still young. If he moves up then I could see that as a problem as he may be the only child to do those things. If he stays down then those younger than him may overtake him.

The Fears

I know this is covering old ground but the decision day is getting closer. I had a chat with him and he really wants to move up. On days when I forget that he is disabled he seems so level headed, and that it would just be stupid not to let him move up. Suggesting that he will fail before we even let him try. But should we not upset him and just wait for him to fail, or should we nurture him and prevent him from failing. I know that the education system is more likely to help the school financially after he has failed – but we are lucky that he’s at a good school and they do not want that. He’s had a lot of changes lately and he’s not been himself. I had the back door open earlier and I told him not to go outside. I said that it was too wet. It was fresh air – I didn’t add that. I just said, “Kyle, don’t go outside. It is wet.” He is five years old. He said, “What did you say?” and I repeated it. Then he repeated, “What did you say?” and I repeated it again. This happened another few times before I just kissed and hugged him. Then I went upstairs and cried. He is disabled and just because it is invisible does not mean that he does not need the help. I have to stop thinking in terms of failing him and think in terms of what is best for him. I wish I had the answers.

he is disabled

But after the decision is made I shall continue being positive for him. He has come such a long way. If he stays behind he will be ahead of his peers. Then that will be good for his confidence. If he moves up then it will be because it has been decided that it is best for him and he can cope. Either way I can forget that he is disabled then he can just be Kyle again.

parent carer of disabled child

Parent Carer of a Disabled Children – Undervalued?

As a parent carer of disabled children I feel that we are deeply undervalued. Well carers in general, but I would like to focus on being a parent carer of disabled children. Those of us who do not go out to work, and earn a certain amount, seem to be considered that we are not doing enough. This post was actually triggered by a comment about whether I would like to come off benefits at some point. You see the thing is I am a parent carer as I have 2 disabled sons (only one of which I receive carers allowance for). Some would argue that they are my children and I should not receive money for them (see my previous post on Pinkoddy about why I feel it is right for people to claim disability living allowance for their children). But I want to do whatever I feel will help them most in life.

parent carer of disabled child

You can claim Carers Allowance as a Parent Carer

Carers allowance is paid to those (including if you are a parent carer) who are looking after someone who receives:

  • Attendance Allowance
  • Disability Living Allowance – the middle or highest care rate
  • Constant Attendance Allowance at or above the normal maximum rate with an Industrial Injuries Disablement Benefit
  • Constant Attendance Allowance at the basic (full day) rate with a War Disablement Pension
  • Armed Forces Independence Payment (AFIP)
  • Personal Independence Payment daily living component

The  parent carer (but you don’t have to be the parent) must be over 16 years old and care for at least 35 hours a week, for which they are given an allowance of £59.75. Ironically the comment was made after we had been discussing the fact that self-employed people should be earning at least the minimum wage, but this equates to less than £1.71 an hour! Well below minimum wage. Of course after putting your career on hold if you are lucky enough that child will become independent enough to leave home and make a life for themselves. But what of you then – too old to retrain and lacking in experience to work other areas, the whole time you have been scrapping by on minimum money.

parent carer of disabled child

Now I know that you can be a  parent carer and work around these hours (say when a child is at school). I feel that you are lucky if as are a parent carer you have  found a good enough employers to be flexible with time off, or have a child who, you feel, does not need you to be readily available. Obviously some people HAVE to work, as Carers Allowance is not enough.

For those of us who feel that we need to be (and I am well aware that parents of non-disabled children may feel this too) available for our children – for IEP meetings, annual reviews, because your child is not coping/need to go to the hospital/has fallen asleep – whatever the reason to be taken out of school at short notice – then this small amount of money helps make that a possible option. Whilst they are at school we may also be doing things to help them when they are home again (maybe setting up something to help them develop socially, emotionally, their language, fine motor skills etc, or arranging appointments, going through paperwork, washing their wet bedding – I am sure the list (and seriousness) could go on and on.

And of course there’s all the things that as a parent carer you have to do, above and beyond what you would do for a non-disabled child, for the 35 hours that you are with them. The one thing I am pleased about is that to receive carers allowance you do not have to justify what you do, you just have to show that the person you are caring for has a need to be cared for.

And yes I would like not to have to feel like the best situation is for me to claim, I would love that my son had no additional needs.

Do you feel that you are a parent carer who is undervalued? What kind of things do you feel are beyond the norm that you have to do in your role as a  parent carer? What would you say to someone who tried to undervalue what you do?