Not Asking for Help Just Showing How Useless Systems in the Country Are Now

[Deleted User]

I have two kids with special needs. One boy is 20, one boy is 10. Both diagnosed with ASD.

1) My older son has been reassessed by the Royal Maudsley (after two appointments with GP who said no where to get him reassessed in this borough, I GAVE him the webpage showing the Royal Maudsley would accept out of borough patients for assessment). I was assessed for ASD too. Half a report issued (saying I had clinically diagnosable depression, stress and anxiety but RM wanted us assessed for ADHD as well, final assessment can't be made til then). Huge delay sending second lot of out of borough funding requests off because because GP didn't tell me they needed my signature. Was very upset when told they'd been sitting there 2 months, kept repeating 'but its been two months' like a stuck record.., nothing else, was told by receptionist I was being aggressive. Now don't willingly go to GP.

Six months later, no appointment. Found out the RM hadn't received the documents. Sent another copy. Admin left two days later. Didn't pass the appointment request on. Now dealing with another admin and hoping he can get us an appointment. Until I, as the parent can get a diagnosis (or not) I can't get any support.

2) We are in emergency accommodation in a sink estate. Lots of noise, electric meter three floors up (finally managed to get permission to have credit meter put in which EDF did, but lots of problems with account set up. This was after original prepayment provider refused to even give me a payment card leaving us with no gas at all in January with snow on the ground). Imagine sitting in maisonette with two kids with ASD, no lights til we sorted electricity out, and cockroaches - yes we had cockroaches). I have breathing problems, every time I go up there, its causes problems for hours.

We are C priority, which is 'low need'. Council tells me they have no homeless people with anything but a C priority. Social worker has sent forms in that she says anywhere else would get us an A or B priority. But not in Gravesham it seems. I am on my third Sanctuary Housing Advisor. One was promoted, the other went off sick long term, I finally have another one. The only commonality is not one has done anything with Gravesham council since January.

My son has just had his first confrontation with a troublesome tenant. I don't normally let him outside unaccompanied because with his ASD he doesn't know how to deal with situations like this.., but he let the dog in who was barking because of someone idiots antics, had words. So now wondering what the repercussions of that will be. The tenants here are known for running people off the estate if their 'faces don't fit' but council just tell me to report people I don't know and don't have a clue which maisonette they live in (three in each level, strange arrangement so numbering not easy to work out even if I did manage to identify which area the person lives in).

A month ago I was 'offered' a maisonette in the estate. Four floors up, five levels inside, plus in the worst part of the estate. The last tenants were escorted out by the police because they were gay and 'their faces didn't fit'. Thank god, was able to refuse it on basis of the stairs, at first the council tried to deny it was unsuitable then a report was found stating we should only live in a 2 level property because my older son falls down stairs. Before that I was told if I refused it I would lose the emergency accommodation. Stress levels hit the roof, as you can imagine. He can walk, but co-ordination not good. Council refuses to reassess our priority. Tried everything, doesn't seem to be anything I can do. I am now having serious problems with my diabetes. Trying my hardest to control it, consultant says its brittle, but having high blood sugars and hypo's. Quite a few ambulances. All since this attempt to offer us this maisonette, and realising it will probably happen again.

Can't get any help, Shelter say its case work which they don't do, referred me to their legal arm, who says the area of housing I need help with is not funded by legal aid so they can't help. I've tried numerous other organisations.

2) Education: My older son has been trying to get a full level 3 qualification for four years. He's been to a sixth form, and a local college. Both said they'd provide support. They didn't. Now aged 20, he's started another college to do his final few subjects in a Btec.., for which he has to get a loan for £3k which is the colleges fees for a full year of education. He wouldn't need the loan if he'd been even mildly supported in his first two attempts and why the heck does he need to pay £3k when he only needs to attend college til December, then he's done? Oh and guess what, the person that was 'helping' has gone off sick. College has been open less than a month.

My younger son had an Early Learning helper. Guess what, we had her for a month, she's gone off sick. Told she won't be back. He has had a problem with attendance, and he's in Year 6, so they're in a hurry to make them 'grow up'. Problem is its too far too fast for my son. He's getting stressed. But as usual, no matter how I try to put it, no one is listening. Lip service to his ASD but no extra help, support or understanding given to him whatsoever.

3) I tried for a Carers Assessment, got half of it done, then she went off sick after a few missed appointments.

4) I have a father who is 82, with Parkinsons, in Essex, his wife has died. I can only get there if I am lucky once a week for four hours. He needs loads of help but takes a lot of persuasion, and I am trying my absolute best but emails only do so much. He is eating more now but that's all I've managed to do. Social services are going round but no idea when, and I'm unlikely to be called in to help as his wife's daughter is the one who called them. He's deaf you see, he won't hear a lot of what they say. His wife's family's attitude towards him isn't brilliant. But what can I do from so far away.., much as I 'd love to. He's refused to move, says he couldn't cope. Tearing me apart. He's my dad and I am doing so little for him.

5) Older son has a PA.., paid for by social services for 16 hours help. The person they've given him only does 2-4 hours a week. I can't get the agency to contact me, been trying for a month. My son's social worker has tried too.

So I'm at breaking point. Been mention of an insulin pump but person running the scheme has gone on holiday for a month. It won't happen very quickly anyway. There's just no where to go for help, to make sense of this mess. I can see me not here, kids in care (well older son will be put in supported housing). No, I have no friends and family. My younger son's father does give some help but its not an easy situation which I'd rather not go into.

I'm not asking for help. There is none. Really, I've had 15 years to try everything. With very little positive coming out of my efforts. But I wanted to post this so people at least know. There's nothing else for me to do. Sorry if its confusing, I've tried to write it as best I can. There's a lot I haven't put cause obviously I've written practically a book as it is. Sorry, I know its a lot to read.

Oh and my MP said the country can't afford families like mine. I didn't vote for him needless to say.

xylophone

Oh and my MP said the country can't afford families like mine

You wrote to him giving details of the above and that is what he wrote back in his reply?

Doozergirl

I'd try fixing the anxiety and depression first. I know it's incredibly hard in the situation, but the situation won't improve until the mental health does. Anxiety is debilitating, but it can be fixed.

I read every book on both in the 'books on prescription' section in the library and one called 'Healing without Freud or Prozac' or similar which cost me £2 in The Works. Just making sense of mental health issues started me on my path to recovery.

Get a referral to a counsellor for CBT. Should be easier than anything else, even if there is a wait.

[Deleted User]

Yup to both.

Glasgowdan - Really irritates me when I see people not prepared to at least try to help themselves. But I do think you are overstating it a little. But such is life. So many situations can be prevented with some honest self appraisal.

I also DO offer helpful advice but will call a spade a spade. As are you.., its an open forum, we can do that. No offence taken because its an accusation that can be made about my posts.

[Deleted User]

Thank you Doozergirl.., we don't have a very good community mental health service here. Been for two assessments, neither resulted in anything at all happening. They were supposed to result in referrals but twice it doesn't seem to have happened. When you phone them they have no records lol. I can't trawl all that stuff up again for another one.

I'm in a 'what will happen will happen' state. I've tried everything, some things several times and I'm out of steam. There's nothing else to try, no where else to go. But I wanted someone somewhere to know what this situation is like. I'm not expecting help. If it was out there, I'd have found it.

marksoton

deannatrois wrote: »

I have two kids with special needs. One boy is 20, one boy is 10. Both diagnosed with ASD.

1) My older son has been reassessed by the Royal Maudsley (after two appointments with GP who said no where to get him reassessed in this borough, I GAVE him the webpage showing the Royal Maudsley would accept out of borough patients for assessment). I was assessed for ASD too. Half a report issued (saying I had clinically diagnosable depression, stress and anxiety but RM wanted us assessed for ADHD as well, final assessment can't be made til then). Huge delay sending second lot of out of borough funding requests off because because GP didn't tell me they needed my signature. Was very upset when told they'd been sitting there 2 months, kept repeating 'but its been two months' like a stuck record.., nothing else, was told by receptionist I was being aggressive. Now don't willingly go to GP.

Six months later, no appointment. Found out the RM hadn't received the documents. Sent another copy. Admin left two days later. Didn't pass the appointment request on. Now dealing with another admin and hoping he can get us an appointment. Until I, as the parent can get a diagnosis (or not) I can't get any support.

2) We are in emergency accommodation in a sink estate. Lots of noise, electric meter three floors up (finally managed to get permission to have credit meter put in which EDF did, but lots of problems with account set up. This was after original prepayment provider refused to even give me a payment card leaving us with no gas at all in January with snow on the ground). Imagine sitting in maisonette with two kids with ASD, no lights til we sorted electricity out, and cockroaches - yes we had cockroaches). I have breathing problems, every time I go up there, its causes problems for hours.

We are C priority, which is 'low need'. Council tells me they have no homeless people with anything but a C priority. Social worker has sent forms in that she says anywhere else would get us an A or B priority. But not in Gravesham it seems. I am on my third Sanctuary Housing Advisor. One was promoted, the other went off sick long term, I finally have another one. The only commonality is not one has done anything with Gravesham council since January.

My son has just had his first confrontation with a troublesome tenant. I don't normally let him outside unaccompanied because with his ASD he doesn't know how to deal with situations like this.., but he let the dog in who was barking because of someone idiots antics, had words. So now wondering what the repercussions of that will be. The tenants here are known for running people off the estate if their 'faces don't fit' but council just tell me to report people I don't know and don't have a clue which maisonette they live in (three in each level, strange arrangement so numbering not easy to work out even if I did manage to identify which area the person lives in).

A month ago I was 'offered' a maisonette in the estate. Four floors up, five levels inside, plus in the worst part of the estate. The last tenants were escorted out by the police because they were gay and 'their faces didn't fit'. Thank god, was able to refuse it on basis of the stairs, at first the council tried to deny it was unsuitable then a report was found stating we should only live in a 2 level property because my older son falls down stairs. Before that I was told if I refused it I would lose the emergency accommodation. Stress levels hit the roof, as you can imagine. He can walk, but co-ordination not good. Council refuses to reassess our priority. Tried everything, doesn't seem to be anything I can do. I am now having serious problems with my diabetes. Trying my hardest to control it, consultant says its brittle, but having high blood sugars and hypo's. Quite a few ambulances. All since this attempt to offer us this maisonette, and realising it will probably happen again.

Can't get any help, Shelter say its case work which they don't do, referred me to their legal arm, who says the area of housing I need help with is not funded by legal aid so they can't help. I've tried numerous other organisations.

2) Education: My older son has been trying to get a full level 3 qualification for four years. He's been to a sixth form, and a local college. Both said they'd provide support. They didn't. Now aged 20, he's started another college to do his final few subjects in a Btec.., for which he has to get a loan for £3k which is the colleges fees for a full year of education. He wouldn't need the loan if he'd been even mildly supported in his first two attempts and why the heck does he need to pay £3k when he only needs to attend college til December, then he's done? Oh and guess what, the person that was 'helping' has gone off sick. College has been open less than a month.

My younger son had an Early Learning helper. Guess what, we had her for a month, she's gone off sick. Told she won't be back. He has had a problem with attendance, and he's in Year 6, so they're in a hurry to make them 'grow up'. Problem is its too far too fast for my son. He's getting stressed. But as usual, no matter how I try to put it, no one is listening. Lip service to his ASD but no extra help, support or understanding given to him whatsoever.

3) I tried for a Carers Assessment, got half of it done, then she went off sick after a few missed appointments.

4) I have a father who is 82, with Parkinsons, in Essex, his wife has died. I can only get there if I am lucky once a week for four hours. He needs loads of help but takes a lot of persuasion, and I am trying my absolute best but emails only do so much. He is eating more now but that's all I've managed to do. Social services are going round but no idea when, and I'm unlikely to be called in to help as his wife's daughter is the one who called them. He's deaf you see, he won't hear a lot of what they say. His wife's family's attitude towards him isn't brilliant. But what can I do from so far away.., much as I 'd love to. He's refused to move, says he couldn't cope. Tearing me apart. He's my dad and I am doing so little for him.

5) Older son has a PA.., paid for by social services for 16 hours help. The person they've given him only does 2-4 hours a week. I can't get the agency to contact me, been trying for a month. My son's social worker has tried too.

So I'm at breaking point. Been mention of an insulin pump but person running the scheme has gone on holiday for a month. It won't happen very quickly anyway. There's just no where to go for help, to make sense of this mess. I can see me not here, kids in care (well older son will be put in supported housing). No, I have no friends and family. My younger son's father does give some help but its not an easy situation which I'd rather not go into.

I'm not asking for help. There is none. Really, I've had 15 years to try everything. With very little positive coming out of my efforts. But I wanted to post this so people at least know. There's nothing else for me to do. Sorry if its confusing, I've tried to write it as best I can. There's a lot I haven't put cause obviously I've written practically a book as it is. Sorry, I know its a lot to read.

Oh and my MP said the country can't afford families like mine. I didn't vote for him needless to say.

glasgowdan wrote: »

Does your situation explain why so many of your posts are derogatory, sarcastic, rude, belittling and unhelpful?

I'm sorry but the former has pitty party written all over it. Is the father of your children paying? What are you doing to mitigate all the situations you are in?

The latter is not helpful and bordering on rude.

Come on. No need people.

Cakeguts

Here is some help for you. Dad with Parkinsons will have to move into residential care eventually. People with Parkinson's have to have 24 hour nursing care eventually. He will get to the point where he can't swallow or hold a cup. Parkinson's reduces the appetite so people don't eat properly. There is also a good chance that he will get dementia. A lot of people with Parkinson's do get dementia. So in his case there isn't really anything you can do to help. By helping him do things you are only delaying the inevitable. I know all of this because my mother had Parkinson's. We managed to get her into a nursing home before it got too bad so that she didn't need to move when she had become very ill. In her case the most worrying aspect was that she might fall down the stairs in her house because the Parkinson's had affected her coordination when she walked.

For 20 year old son how soon can you arrange for supported housing? If he is going to be unable to live on his own supported housing will be the best for him. I don't know what age you can access this but he will be entitled to have his own life.

You will need to do something about your depression because depression makes problems seem bigger than they actually are and cause negative thought processes.

Bonfire_Bride

You need to address the mental health problems first. I know you say that referrals have not happened, but you need to keep on at them....make a complaint to the surgery and take it from there. You owe it to your children to get this addressed soon. Like stated above, depression and anxiety can make things seem far more desperate than they actually truly are and it can affect your ability to make good decisions and to prioritise issues.

If I wrote down all of my personal life concerns, I could also create a large post that made a few people go "blinking eck" as I'm sure most people on this forum could. However, my mental health allows me to effectively cope with this stress and find ways of dealing with each thing as I need to.

I suppose what I am saying is that you cannot solve all of the above in an instant. Yes, people go on holiday, they go off sick...because they too have their own issues that they are dealing with.

I suggest you go through each of the above...prioritise them and then deal with them until they have each been resolved. Yes, the system is a joke sometimes and yes, people are being put at risk because of admin errors but you must keep going...

Wishing you the very best!

[Deleted User]

I am starting arrangements for my older son to go into supported Housing. Won't be pleasant but can't have him move into the sort of place council will put us.

But in spite of the way things sound.., he does 'have his own life'. I might sound like a disaster but I do put the children first. They don't even know what I am thinking of. Believe you me, I am good at putting a face on things. But I also know I've run out of options now except finding another way for them to live. I wish it wasn't that way.., but it is.

I won't come back for a while, I just wanted to write the inital post. Thank you everyone.

LannieDuck

deannatrois wrote: »

1) Now dealing with another admin and hoping he can get us an appointment. Until I, as the parent can get a diagnosis (or not) I can't get any support.

2) I am on my third Sanctuary Housing Advisor. One was promoted, the other went off sick long term, I finally have another one. The only commonality is not one has done anything with Gravesham council since January.

3) Education: My older son has been trying to get a full level 3 qualification for four years. [...] Oh and guess what, the person that was 'helping' has gone off sick. College has been open less than a month.

My younger son had an Early Learning helper. Guess what, we had her for a month, she's gone off sick. Told she won't be back. He has had a problem with attendance, and he's in Year 6, so they're in a hurry to make them 'grow up'. Problem is its too far too fast for my son. He's getting stressed. But as usual, no matter how I try to put it, no one is listening. Lip service to his ASD but no extra help, support or understanding given to him whatsoever.

3) I tried for a Carers Assessment, got half of it done, then she went off sick after a few missed appointments.

4) I have a father who is 82, with Parkinsons, in Essex, his wife has died. I can only get there if I am lucky once a week for four hours. He needs loads of help but takes a lot of persuasion, and I am trying my absolute best but emails only do so much.

5) Older son has a PA.., paid for by social services for 16 hours help. The person they've given him only does 2-4 hours a week. I can't get the agency to contact me, been trying for a month. My son's social worker has tried too.

So I'm at breaking point. Been mention of an insulin pump but person running the scheme has gone on holiday for a month. It won't happen very quickly anyway.

My younger son's father does give some help but its not an easy situation which I'd rather not go into.

Having lots of different things all fall through because people leave / go on holiday / don't do their jobs is incredibly frustrating. You have my sympathy. Try to chip away at it one thing at a time - as you reduce the number of issues, it should become more manageable.

I've tried to suggest simple ways forward for your points above. I know they're probably obvious, but sometimes it helps to have someone else look at problems from outside and suggest next steps.

1) You've got someone you're dealing with now. Keep on top of him in a polite way. Has he confirmed that he has all the paperwork? Are you in the system awaiting an appointment?

2) You have a new adviser. What is it you want them to do - request a reassessment? Have you discussed your situation with them so they can advise whether you're likely to be regraded? If not, the first step is to make an appointment.

3) Older son - what help does he need to get him through his programme this time around? Perhaps a visit to the school to discuss? Would older son's father be able to take this one on?

Younger son - what needs to be done to get him a new Early Learning helper? How can you help improve his attendance?

4) You need to have a proper chat with your dad's wife's family. What's the long-term strategy here? Someone above suggested a care home. Do you think that would be suitable?

5) Does the PA have an explanation when s/he does appear? Perhaps there's been some admin mix-up and they don't realise your son is due more time.

6) Insulin pump - who mentioned this, and is there anyone covering the scheme for the holiday period? If not (and if not medically urgent), just put this on hold until they get back.

LannieDuck

deannatrois wrote: »

I am starting arrangements for my older son to go into supported Housing. Won't be pleasant but can't have him move into the sort of place council will put us.

But in spite of the way things sound.., he does 'have his own life'. I might sound like a disaster but I do put the children first. They don't even know what I am thinking of. Believe you me, I am good at putting a face on things. But I also know I've run out of options now except finding another way for them to live. I wish it wasn't that way.., but it is.

I won't come back for a while, I just wanted to write the inital post. Thank you everyone.

I think you might be right to investigate this. It sounds as if your sons need more support than you're able to give by yourself at present. I hope it goes well.