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Care Opinion

Lack of respite care

Posted By ISOLATEDIsa

"Lack of respite care"

About: Bellshill Locality Support Service (Disability)

(as a service user),

I am a single parent with the sole care of my son who is now into his teenage years. He has severe ADHD and autism.

He exhibits extremely challenging behaviour. His can be aggressive and is very destructive in the home. It is very stressful caring for him because of his high risk taking behaviours and lack of insight into the dangers for himself or other people.

I have sought help from social work on a voluntary basis for almost 10 years now. I have asked for practical help for my son over those years to give me a break from my caring role and to see that he is supervised safely in the community.

I have even reported the failure of social work to support me as a carer and my son as a disabled child to the Public Services Ombudsman and my complaint was upheld. Following that, my son was apparently awarded a Self Directed Support budget of £5,000 2 years ago for a worker to take him to activities. I was assured this money had been awarded.

A worker was never sent to us, and the budget seems to have mysteriously disappeared. I've asked for the reinstatement of the SDS budget but I feel like I was fobbed off with excuses, such as "covid". Social work are now seeking a compulsory supervision order for my son from the Children's Hearing Service, despite the fact that I have begged for practical assistance from them for almost 10 years.

The latest social worker is the best by far but is constrained by lack of resources. Comes to my house for a chat whenever I get in contact about my son's behaviours. But this does not help me. I need respite. I am unable to work. I have not had a relationship for well over a decade. I have no friends. I am totally isolated. I cannot make plans or go anywhere.

Now that he is older, social work have referred him to 'Community Alternatives' but he refused to go and they say they can't force him. It's too little too late. I have said all along that I think he needs a young male worker to take him out so he is supervised in the community. I have said that he is not safe unsupervised in the community.

In 3 months this year he broke or dislocated 3 bones (thumb, ankle and knee). He climbs to unsafe heights and does other very risky activities, including several involving vehicles. He does not understand danger, making it hard to keep him safe. The stress of it all has really affected my mental health and I don't know how long I can cope with all of this alone. 

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Responses

Response from Patricia Kearns, North Lanarkshire Health & Social Care Partnership 2 years ago
Patricia Kearns
North Lanarkshire Health & Social Care Partnership

Submitted on 17/08/2021 at 12:27
Published on Care Opinion at 12:27

Dear ISOLATEDIsa

I've just caught sight of your message, and I'll arrange for someone to respond. I am genuinely sorry to hear that you and your family have had such a hard time.

Best regards

Patricia

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by ISOLATEDIsa (a service user)

Thanks Patricia. I appreciate that. It's good that Care Opinion is being monitored.

Response from Patricia Kearns, North Lanarkshire Health & Social Care Partnership 2 years ago
Patricia Kearns
North Lanarkshire Health & Social Care Partnership

Submitted on 17/08/2021 at 18:04
Published on Care Opinion at 18:04

Hello again ISOLATEDIsa

To try to progress this, can I suggest that you contact your son's social worker in the Bellshill Team to discuss further?

Also, it might also be of benefit for you to talk to the team at Lanarkshire Carers. They can provide lots of support, advice and information and will also help you to develop an Adult Carer Support Plan. Their contact details are as follows: Telephone - 01698 428090 or email info@lanarkshirecarers.org.uk

Best regards

Patricia

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by ISOLATEDIsa (a service user)

Hi Patricia,

We are now on our 4th social worker. I have spoken to the latest one repeatedly about this issue. I have even made complaints to the council and escalated this to the Ombudsman where my complaint was upheld, but still nothing has changed. Social Work are now claiming (after a decade of my asking for practical help via SDS/respite) that he is now not being considered for an SDS budget as his risk taking behaviour in the community has now amounted to criminal charges. He was awarded an SDS budget 2 years ago for £5,000, but this never materialised despite my being promised this was an initial award and would be used to pay for a worker to keep my son safe in the community and to give me a break for a few hours per week.

Also, I have contacted the Carers' organisation - they recommended Care Opinion. I have also completed The Carer's Journey several times to ask for my needs as a carer to be met. Nothing has ever been action to provide me with respite as a result of sitting for several hours over days with a carer's charity, completing the carer's journey for North Lanarkshire Council.

I have been trying to get practical help and a budget for my son for a decade. I feel that I have been continually fobbed off with empty promises and chats from social workers who think popping by for a chat is adequate support. What my child and I have needed all along is for him to have a worker or 2 to take him out in the community to keep him safe and to give me a break. Anything short of this is inadequate. I have begged, pleaded, complained and contacted everyone I can think of in the last 10 years. Nothing. My son's various schools, psychiatrists and psychologist, as well as NHS staff at casualty and the police have all reported their concerns over the years about my safety and the toll of my caring role on my mental health, but despite all those reports of concern from a variety of sources, social work do nothing except "chat". We needed a budget several years ago. I've been at crisis point for a long time. I've even tried to voluntarily give up care of my son because I cannot cope and have been ignored or told I will be charged with child abandonment. I have contacted emergency social work in tears and saying I can't see the point of living any more and that was the response I got.

The situation for carers of children with disabilities that cause challenging behaviour is at crisis point in North Lanarkshire. I believe there is unfair discrimination of children with autism and ADHD and these disabilities are not taken seriously or recognised as such by NLC. This has to change.

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