Overwhelmed and exasperated and can't go on.

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Hello everyone, I'm new here and I'm hoping for some advice. I don't know what to do anymore. I've lost my fight. I care for my 2 adult sons, age 23 and 20 with different disabilities. They both need help throughout the day and throughout the night. I've also 2 younger children. I'm exasperated and exhausted. I've not had a break in 23 years and cared for them as a single parent for many years. I am a good carer (I don't mean to sound boastful but my children are extremely well cared for and have had everything I can possibly give them) I do not resent caring for them.

The problem is not the caring for my disabled children it's dealing with the social workers/occupational therapists who plan their care packages. My oldest sons OC had him break down in tears of frustration and embarrassment on her last visit to "sort out his care plan" as her conduct towards him was so atrocious. My son has a lifelong severe neurological condition which he's had since birth. His SDS was approved and it was approved his brother could be employed as his PA as his condition means supports can't be planned. We were delighted with this outcome as the improvements in my disabled sons life have been remarkable since his brother turned 18, passed his driving test and began taking him out in the car, he goes drives, out to eat, cinema, to the sea shore. I'm so happy to see him put weight on, take more care of his appearance and be generally happier-previously, my son had only left the house 6 times in 2 years and half were for hospital appointment. My son has waited many many months for this decision, meanwhile my 18 year old son held off from applying for jobs as he was told his employment would be soon, he's a student at college.

The OC arrived at the door with my sons care plan. She had a student with her and announced she would be happy to go ahead with the care plan as long as the following CONDITIONS were followed. I was aghast. Her conditions were-My son must adhere STRICTLY to a medication plan that she and my sons consultant would put together. My son was astounded and I spoke on his behalf, he has trouble letting his opinion be known and needs an advocate, and told her my son manages his medication in the best way possible as it gives him dreadful side affect. She also stated that "IF THERE IS NO MARKED IMPROVEMENT IN MY SONS CONDITION BY THIS TIME NEXT YEAR, THE SUPPORTS WOULD BE WITHDRAWN" So sorry for shouting-My son has a lifelong neurological condition that will never get better. Me and my son were in tears of exasperation. There were other such ridiculous and unreasonable conditions too such as he was to limit the time he spend communicating online with friends in America?? This communication is essential to his mental health as it's the only friends he has and most of them have the same condition as he has and as my son is up during the night the USA time difference is perfect for him to communicate with them. His OC says this is impacting on his sleep/wake cycle-He doesn't have a sleep/wake cycle as hes missing melatonin in his brain. She left and I emailed on behalf of my son to clearly explain my son manages his medication the way he does because of the side affect and the improvements in his health since his brother started taking him out was enough evidence he was self caring to the best of his ability. She replied a couple of weeks later STILL asking to speak with my sons consultant to "Work together to find a medication plan that we are all happy with" Forgive me but human rights give you the choice of taking meds or choosing not to, especially if they don't do anything to help. We told her no, you may not contact his consultant and we are now going to make a complaint. My son feels blackmailed, bullied, misunderstood and exasperated, as do I. Can she withhold his payment under these circumstances?
I can't believe this should be allowed. Meanwhile my other sons SDS budget has been halved by a new social worker that we have seem once and she hasn't answered any of our emails to ask why. We don't know what to do.

So very sorry this is so long. I couldn't sleep last night with anger and frustration, this OC has known my son for 4 years. What hope have we got and I don't know what to do. She says her and her manager have "Read about his condition so they know what they are talking about"Thank you if even got to the end of this. This is only a small part of what I'm trying to sort out for my sons. Everything, education, hobbies, appointments, mental health, food care, washing, cleaning, driving, forms, benefits, and when one gets any form of respite, little as it is, Now my sons will get none because one budget is being withheld until my son complies with their demands and the other is halved. I can't do anything because I have the other and my 2 kids to look after. Thanks again and I'm sorry if I sound selfish but I'm deflated, love and best wishes to all carers and carees. Hugs xx
I have a son with severe learning difficulties, now 38. I've had more than my fair share of problems with Social Services. I'm about to have the plumbers in tomorrow, to basically remove almost all the plumbing and start again, so really busy, will write again later when there's more time.
First, keep a diary. Every phone call, conversation, who you speak to, date, time.
Second, google "Legal Aid" plus the name of where you live. Get a solicitor for your sons. I've just done this, the LA were ignoring me for over a year, and are now talking to me!
Third, write a SHORT letter of complaint to the Director of Social Services, saying her behaviour would "indicate a need for urgent training" and inadequate and inappropriate. Send it for the PERSONAL ATTENTION OF ...
Say you intend to go to the Ombudsman if no clear evidence of improvement within 14 days.
Fourth go to the LA's website, find the section for Adult Services Complaints and fill in an online complaint form. Be sure to head it FORMAL COMPLAINT.
I have two things which I keep reminding myself
"Don't get mad, get even"
"Revenge is a dish best served cold".

You and your son might also like to make an individual "Subject Access Request" to the authority, to see what this woman has written about you, and your son, behind your back.
Social Workers are registered by a governing body. Google this, check that the SW you have is registered with them. Some LA's are using unqualified staff. If she is qualified, ring their helpline, tell them what she is doing, and then ask if you should make a formal complaint to them too.

After all that, try and take a mental day off from all this paperwork and aggro and have a "holiday at home" with the family. I live in a tourist town on the south coast, every so often we would "play tourists" and buy an ice cream on the Quay, float toy boats, and watch the world go by.
chocolatesolveseverything wrote:Hello everyone, I'm new here and I'm hoping for some advice. I don't know what to do anymore. I've lost my fight. I care for my 2 adult sons, age 23 and 20 with different disabilities. They both need help throughout the day and throughout the night. I've also 2 younger children. I'm exasperated and exhausted. I've not had a break in 23 years and cared for them as a single parent for many years. I am a good carer (I don't mean to sound boastful but my children are extremely well cared for and have had everything I can possibly give them) I do not resent caring for them.

The problem is not the caring for my disabled children it's dealing with the social workers/occupational therapists who plan their care packages. My oldest sons OC had him break down in tears of frustration and embarrassment on her last visit to "sort out his care plan" as her conduct towards him was so atrocious. My son has a lifelong severe neurological condition which he's had since birth. His SDS was approved and it was approved his brother could be employed as his PA as his condition means supports can't be planned. We were delighted with this outcome as the improvements in my disabled sons life have been remarkable since his brother turned 18, passed his driving test and began taking him out in the car, he goes drives, out to eat, cinema, to the sea shore. I'm so happy to see him put weight on, take more care of his appearance and be generally happier-previously, my son had only left the house 6 times in 2 years and half were for hospital appointment. My son has waited many many months for this decision, meanwhile my 18 year old son held off from applying for jobs as he was told his employment would be soon, he's a student at college.

The OC arrived at the door with my sons care plan. She had a student with her and announced she would be happy to go ahead with the care plan as long as the following CONDITIONS were followed. I was aghast. Her conditions were-My son must adhere STRICTLY to a medication plan that she and my sons consultant would put together. My son was astounded and I spoke on his behalf, he has trouble letting his opinion be known and needs an advocate, and told her my son manages his medication in the best way possible as it gives him dreadful side affect. She also stated that "IF THERE IS NO MARKED IMPROVEMENT IN MY SONS CONDITION BY THIS TIME NEXT YEAR, THE SUPPORTS WOULD BE WITHDRAWN" So sorry for shouting-My son has a lifelong neurological condition that will never get better. Me and my son were in tears of exasperation. There were other such ridiculous and unreasonable conditions too such as he was to limit the time he spend communicating online with friends in America?? This communication is essential to his mental health as it's the only friends he has and most of them have the same condition as he has and as my son is up during the night the USA time difference is perfect for him to communicate with them. His OC says this is impacting on his sleep/wake cycle-He doesn't have a sleep/wake cycle as hes missing melatonin in his brain. She left and I emailed on behalf of my son to clearly explain my son manages his medication the way he does because of the side affect and the improvements in his health since his brother started taking him out was enough evidence he was self caring to the best of his ability. She replied a couple of weeks later STILL asking to speak with my sons consultant to "Work together to find a medication plan that we are all happy with" Forgive me but human rights give you the choice of taking meds or choosing not to, especially if they don't do anything to help. We told her no, you may not contact his consultant and we are now going to make a complaint. My son feels blackmailed, bullied, misunderstood and exasperated, as do I. Can she withhold his payment under these circumstances?
I can't believe this should be allowed. Meanwhile my other sons SDS budget has been halved by a new social worker that we have seem once and she hasn't answered any of our emails to ask why. We don't know what to do.

So very sorry this is so long. I couldn't sleep last night with anger and frustration, this OC has known my son for 4 years. What hope have we got and I don't know what to do. She says her and her manager have "Read about his condition so they know what they are talking about"Thank you if even got to the end of this. This is only a small part of what I'm trying to sort out for my sons. Everything, education, hobbies, appointments, mental health, food care, washing, cleaning, driving, forms, benefits, and when one gets any form of respite, little as it is, Now my sons will get none because one budget is being withheld until my son complies with their demands and the other is halved. I can't do anything because I have the other and my 2 kids to look after. Thanks again and I'm sorry if I sound selfish but I'm deflated, love and best wishes to all carers and carees. Hugs xx
Have you ever spoke to quality & care commission?
http://www.cqc.org.uk/help-advice

It may be a good starting point. To find out your entitlement to expect the best care package. Help with signposting in dealing with Social Services.

Do you belong to any local carers groups in your area. It is really up to you who you allow in your home. Professional should not make your feel upset,vulnerable and dictated too.
Do you get written confirmation on home visits. You are entitled to see all documentation about your family.
Hi Bowlingbun, Thank you, I greatly appreciate your reply and good sound advice. I am going to do this this afternoon. I need to educate myself about my sons (and my) rights. I have begun to look at this but it seems such a minefield and I don't know where to start. I've looked at open uni courses and would love to do one.
You made me giggle when you said "Write a SHORT letter of complaint" :lol: Once the floodgates are open it's hard to stop! Thank you again. My 20 year old has learning difficulties too and such a lovely young chap. Hugs to you and your son.xx
Thank you Sunnydisposition. What a lovely username. I will certainly look into the links you have sent me. I'm feeling a little less hopeless and I'm going to roll up my sleeves for a fight. Why do they make it so hard for carers when all we do is work ourselves into the ground to save them money? You think they would treat us like royalty. My sons supports cost £340.00 per day for respite. We get paid approx £8.00 per day says it all! Thanks and hugs to you xx
Hi and welcome....

I have been a carer since 1980 for various family members. I was in a group of 3 sets of parents trying to set up respite care for children in our area - we simply were treated with lack of understanding and consideration, just as you have been. We decided to make a film of what it was like living our lives - it was hard to do, but we persuaded a local company to sponsor it - and when we presented it at County Hall, I had a phone call the following day saying we had got a budget of £180,000 per year - that was 22 years ago, so worth a lot more than now. Just checked = £390K.

I had an ongoing row with County transport about what time they would pick my son up to take him to his school 30 miles away - I suggested to the Head of Transport that he came to my house, slept over night and then did what I had to do each morning to get my lad and his 3 siblings ready for school..... of course he wouldn't so I suggested that his refusal would not look good in the local papers and on local TV- I got what I wanted.
The point is - these social workers go home to their normal lives, while we continue to try and live ours and the only answer is TO SHAME THEM into agreement..... good luck with everything you are trying to do...... xxx
Hiya Chocolate, I would do what Bowingbun has said and deffo legal aid application as social services are not likely to budge on complaint alone and they are notorious at not listening. Yes and definitely take some time out and if necessary stop the visits from this person who's upsetting your son most likely deliberately.
Bowlingbun, I loved the 'play tourist' idea...that's brilliant!
Charm, I live in the New Forest, on the edge of the National Park. My drive to see M takes me over the central heathland, however many times I do it, I never tire of it. It's where I've lived all my life, apart from a working holiday in Australia. We don't need to spend lots of money visiting places, we can have a lovely day in the garden, laeger than average, maybe with the call of a pair of buzzards calling to each other overhead. We know we are lucky, house prices have rocketed so no chance for youngsters now to get on the housing ladder. A whole generation living with mum and dad or moving away.