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also stated that "IF THERE IS NO MARKED IMPROVEMENT IN MY SONS CONDITION BY THIS TIME NEXT YEAR, THE SUPPORTS WOULD BE WITHDRAWN" So sorry for shouting-My son has a lifelong neurological condition that will never get better.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
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