Children

[klazien]

Does anybody ever think about what happens to handicapped children when they are adults?

The handicap does not suddenly stop. Maybe help that we Ataxians get?

[majajefferies]

Our son went from a disabled child and is now a disabled 21 year old adult.

I am not sure what you mean by what happens to them? Where?

[klazien in reply to majajefferies]

All through their schoolyears there is a lot of help to get through school but no jobs afterwards.

Isn’t there anything to help handicapped adults to get a job, worthy of their ability? If not, what is the point of all this help with education?

Not everybody wants to spend the rest of their live, living of benefits.

[7151 in reply to klazien]

There are lots of help out there in France we have maison de handicap for adults My son has à handicap and all employeurs by law have to hire à certains amont of handicap people hence thé employer also gets help hé payes à lot less in chargés ..my son is à adult handicapés luckily very good à manuel work ..hé passed all his exams with à secrétaire médical helping him ..hé is never out of work i guess it dépends on what degrés is thé handicap

[PatsyIpswich]

Yes I do but have no words. X

[majajefferies]

There are teams in eavery area of he uk who can support disabled or chronically ill people to gain meaningful and suitable employment.

[majajefferies]

when I went to nec disability show (naidex) there were quite a few stands there advertising this kind of support. if you can look at their website and go through the participants you'll find them, and there must be more uk wide who just didn't happen to advertise their services there. If you are struggling please let me know and i'll do my best to help.

i also know that there are people out there who specialise in adapting the workplace to the needs of the disabled employee once you have the job.

also, there are quotas companies are trying to reach to be seen as good employers which in this case works in our favour.

[Jenandbeth]

I am mum to a 28 year old with SCA and progressive symptoms since birth including learning disability. I am also an ASN teacher with 20 years plus experience. And in my experience nothing happens. They just leave school and transfer to adult services. Depending on level of need the Local Authority assess the need against a needs matrix and give a care allowance. My daughter's needs are significant so she attends a day centre 3 days a week and we get 4 hours a week weekend care until my other kids are 16, to spend time with them! We have always been open to considering future options as I would rather have my daughter settled in alternative care before we die, but noone from the authority has approached us with options and there is nothing available when weve asked. Whatever your politics it is just factual that social care ( and education) has had ten successive years of real term cuts. My daughter's day centre and carers are brilliant and the professionals around her, SALT, OT, Physio are great when we can get them but they are spread so thinly now. The entire team around my child are having to do much more with much less. I know our personal experience largely reflects the experience of other parents and adult children due to my work! Gone are the days of 24/7 care for 99.9% of our kids. Even 5 days a week care is gone. I was forced to reduce my work as I couldn't cover the care. I continue to work the 3 days my daughter attends day care. This is not a violin concert tho ... we make the best of what we've got ... I am very determined ... some might say bloody minded 🤣... to not simply survive but thrive!If you hoped there are lots of untapped resources out there ... there isn't!?! We all just need to make the best of what we are given until such time as there is significant change of political and possibly social attitude to and investment in social care!

[Jenandbeth]

She also gets respite care which works out about 3 nights every couple of months and a week in summer!

[Jenandbeth]

For more able young people there are some limited options e.g. college and school leavers now receive input from Developing the Young Workforce employees who try to meet skills with employment opportunities! There are good people out there trying to support but yep I see folk trying to do a lot more with a lot less than when I entered this sector. The 'investment' in education is due to legal requirement to provide ASN learners with equity and equality of provision as that of their mainstream peers, it's a great shame it doesn’t carry into adulthood. Education is also seen as early intervention to give the best start in life and minimise future care needs/ costs but some folk, like my daughter will have lifelong care needs.

[klazien in reply to Jenandbeth]

My adult son is very smart, has Asperger Syndrome and has always refused to accept this.

His severe dyspraxia and obsessive and compulsive nature are accepted but help is refused by him. He also refused further education possibly because of bad memories.

So now he is 40 years old, but much younger looking and has no work. We still help him but for how much longer? We are old now and I am severely handicapped.

He applied for benefits but that was refused. I think he should have applied again but cannot force him as he is an adult.

During his schooltime his condition, Asperger, was not known yet, he went through hell, and I was battling the school system.

Teachers found him disruptive, and the equivalent of laptops then was hardly accepted.

When we lived in Brussels there was a time when he had no school. Because of his condition, French or Flemish speaking schools were out of the question and the international schools were private and exercised their right not to take him. The European school there, not private, could not help him because they needed an ok from all the member states.

So than I found a new international school that took him but on the provision that all the extra help was paid for by us.

Now there is a lot of help during schooltime but not much after.

[Jenandbeth]

I agree, there is a huge gap post school. If I start to look to the future I feel overwhelmed and scared so I find it best to just deal with today and consciously catch the golden moments to get me thro the 💩 moments. Watching my daughter's condition degenerate is painful, but there are still moments of joy to be caught. Take care and try not to worry about tomorrow x