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Can they reduce my personal budget when the complaint hasn't been resolved?

anaqianaqi Member Posts: 54 Courageous
Hi!

I had a social care review in October and despite the assessor recommending my personal budget should stay the same it has been cut by 7 hours per week.  I have complained to the manager and the complaints department, and I quoted several statements from the Care Act as I think the cut is unlawful.  My needs, circumstances and eligibility have not changed but the local authority insist the new budget will meet my needs.  They said my family can care for me but they can't due to work commitments and health problems.

I have taken my complaint to the Local Government Ombudsman and my MP has written a letter of support but the local authority are still going to make the cut on 5th March 2019 despite the fact the my complaint has not been resolved.

Are they legally allowed to do this?

Thanks!

Replies

  • RoddyRoddy Member Posts: 389 Pioneering
    Hi Anaqi

    As you say that the matter is currently being investigated by the Ombudsmen and your MP, then it would be best to wait for the outcome of those investigations. If the result is in your favour, then your Council will be obliged act upon the decision of the Ombudsmen, adjust their records accordingly. 

    They may also be obliged to pay you any backdated underpayment since your investigation was actioned. 

    I hope this helps in some way...

    Rodders  
  • anaqianaqi Member Posts: 54 Courageous
    Hi Rodders

    The local authority are not going to wait for the ombudsman's decision.  They confirmed they are going to cut my budget as planned on 5th March. 

    It's not just a matter of money.  This will affect my health and backdating my funding won't be of any use because the damage will have already been done.

    Do you know of any legislation that says the LA can't cut a budget if the complaint is with the ombudsman?  I need to stop them from making this cut somehow as the stress is seriously affecting my health.
  • RoddyRoddy Member Posts: 389 Pioneering
    Hi anaqi,

    Have you tried your local Citizens Advice Centre? I know that everybody suggests them, but they truly may be able to put things right. Take with you ALL written documentation and correspondence between all parties, including those from your Social Care Review and the subsequent decision made by your Council. The council should have also provided you with their reasons for making heir decision. Do this BEFORE 5th March and as soon as is convenient for you. 
  • anaqianaqi Member Posts: 54 Courageous
    I haven't tried the CAB.  I'm not able to get out of the house that much.  I know what the council has done is in breach of The Care Act, I even quoted it at them but they ignored me.  Bot the community care worker and the OT I saw said they would be recommending my support package remain the same so I don't understand why it's been cut.

    The only reason the local authority gave was that my needs could be met with the new reduced support package.  In the support plan (that is riddled with mistakes) they said that my family can care for me but they are unable to.  I have told them this but they have ignored it.  They also lied and said my needs had decreased when they haven't and they ticked the box to say that I agreed with it before I'd even seen a copy of it. 

    It's not secret that my local authority is short of money.  They have recently been in trouble because they tried to make people pay more towards their care but they only gave them 48 hours notice so they have had to delay rolling out the changes.

    I'm pretty sure the only reason they have cut my budget is to save money and that is in direct contravention of The Care Act.  I know what I'm doing it's just the local authority have to make the cuts because they can't afford to keep everyone's budgets at the same level.  I am praying that the ombudsman find in my favour.  They haven't even let me know if they are going to investigate yet and they haven't asked for any additional information.

    I just need to know if it's legal for them to cut my support before the complaint has been resolved so I can tell them they can't do it.
  • RoddyRoddy Member Posts: 389 Pioneering
    It can a while and many times of trying, but the CAB can and will call you back if you contact them online. They also have a live-chat facility... It seems to me that you've been given inconsistent advice and reasons by your Council. If you've already contacted the Ombudsmen, then you should at least receive a reply. 

    I've seen things like this happen before, where a council passes the buck by providing a set amount for you to take charge of all of your support needs. I refused to accept one when I was offered the same during my time as a carer for my Son & Mother. 

    You certainly need some proper help with this, and again I can only personally recommend CAB as your port of call.  
  • poppy123456poppy123456 Community champion Posts: 22,214 Disability Gamechanger
    Hi,

    When you have an assessment to see how much care/support you need, once the care plan has been written it's then sent to the manager( supervisor) to look at and approve. The person that does this can decide to decrease those hours based on the information in the report (plan) A personal budget can't be given with out it first being approved by a higher person. They can legally do this.

    What they can't legally do is decrease your personal budget because of government funding and to save money.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • anaqianaqi Member Posts: 54 Courageous
    Hi Poppy!

    I know they can't legally cut my budget but they are doing.  I've already been through the entire complaints process and it's now with the ombudsman.

    My community care assessment was almost word for word the same as my previous one in 2017.  They literally copied it and elaborated on a few things..  The problem was with how the community care worker recorded the costs. 

    For example I previously had 3 hours domestic per week. I told her my son's asthma nurse recommended daily damp dusting.  She said they need to justify every minute of care so she recorded 45 minutes per day for dusting.  The manager said they will only commission 30 minutes per week support with domestic. I was told this was policy by care worker and OT. The manager denied it was policy but said they would not commission more than 30 minutes domestic support per week.  That is just one example of where the budget has been cut.

    I quoted the Care Act 2014 statutory guidance which says reviews shouldnot contain any surprises, they should not be used as an excuse to reduce budgets and they cannot set arbitrary limits on the support they offer.  I was told the new budget would meet my needs and if I wasn't happy I could complain to the complaints department.

    I did, they refused to address the individual issues I raised and just looked at the reducetion in budget.  They said the new budget would meet my needs and if I wasn't happy I could take my complaint to the LGO. 

    My new support plan was full of mistakes and omissions.  They even got the hourly rate wrong because they copied it off the last review in 2017.  It said my family can provide support but they didn't ask them and they can't. My husband works full time and has health issues, and my teenage children also have health issues.  My husband was offered a carers assessment but turned it down because he'd have to take a day off work and he'd only get a one off payment of £200 so he didnt think it was worth it.  My children were offered young carers assessments but they turned it down because they don't care for me and taking them bowling or giving them an iPad isn't really going to help.  I feel very strongly that if disabled parents needs are met then there will be no more young carers.

    I quoted the Care Act again as they cannot make my husband reponsible for my care because he is not willing and able to do any additional tasks on top of whst he already does for me.  I quoted how they can't make him care for me if it affects his ability to work and to have a life outside caring but they ignored it all and said the new budget would meet my needs.

    They even took my parental responsibility support away ane said I can use my community access hours and my 6 week surplus to take my children to their medical appointments.  That means some weeks I wouldn't be able to leave the house to meet my social needs because I have to take my daughter to her counselling sessions.

    My needs have not changed, my circumstances have not changed, my eligibility has not changed, the Care Act has not changed but they are taking 7 hours a week support away from me.  The only reason I can think of is a financial one and as you quite rightly said they can't do that, but they ARE doing that.
  • anaqianaqi Member Posts: 54 Courageous
    I've been doing some more research and it looks like the local authority are a law unto themselves.  I'm panicking because I don't know how I'm going to cope when they cut my budget next week.

    I spoke to Citizen's Advice.  They couldn't offer any help at all.  It's not a problem they've come across before.  The recommended I speak to the Local Government Ombudsman.

    I looks like the LGO could be a complete waste of time too.  They don't actually have the power to do anything.  They can only look to see if the council has followed the complaint procedure properly.  So if the LGO complaint comes to nothing I either have to suffer with less help than I need or get myself into debt by paying for private care.  
  • RoddyRoddy Member Posts: 389 Pioneering
    edited February 2019
    It's always the way, isn't it... People passing blame or the responsibility to another and then still nothing gets done...  Have you gone through the Council's complaints procedure, ABSOLUTELY THOROUGHLY?  Taken it to the highest level etc?  'IF' you can prove beyond any reasonable doubt that the Council have not dealt with your complaint, then the LGO  'is' obliged to challenge them and their decision. 
  • anaqianaqi Member Posts: 54 Courageous
    Yes, I have.  It all started with a complaint about an OT's unprofessional behaviour.  She told me lots of things that weren't true, she interrogated me about things that were on my support plan that I hadn't even seen at that point, she told me my husband must do all the domestic chores because she had to because she was a single parent, she wanted to know why my children needed help making packed lunches and she accused me of not giving full disclosure when I said my children had food issues and mental health problems, she bullied me and left me crying. 

    Her manager did apologise for some aspects of her behaviour.  I didn't take that complaint further because at that time I found out that my budget was going to be cut and that complaint was more urgent.  When I got my support plan I emailed the community care worker and told her everything that was wrong with it, including:
    • omissions from my last support plan that stated what my outcomes were and how my husband is a supportive husband and father.
    • failing to set goals for three of my identified needs (the support plan states you must include at least one goal for each identified need)
    • failure to include my parental responsibility in record of costs (My previous support plan included "parenting support to include supporting Clair access health and community facilities." This is still relevant as my children have health conditions.  If this need is not met the responsibility will fall on my husband and that will impede his ability to work which breaches the care act.  My children had a total of 24 medical appointments in 2018 and he can't take that much time off work.)
    • giving the incorrect hourly rate in the costing
    • checking the "Decrease in need" box when there is no evidence of a decrease in need.
    I said I could not agree to the support plan.

    I was offered another review but due to health reasons I declined.  I'd already had over 3 hours of assessments which I found very stressful and they caused me a lot of pain and fatigue.  I asked if I could review a copy of my assessment so I could let them know what was right and wrong.  The complaints department said I could do a self assessment.  I again requested a copy of the original assessment.  They sent me copies of both the community care worker and OT assessments.

    The recent assessment was almost word for word the same as the one from my previous review in 2017 with a few updated details such as my children's ages and how I now have an assistance dog.  The assessment was mostly accurate but the record of costs was completely wrong and the problems I'd had with the OT were written in the "differences of opinion" box who basically said my husband and children are responsible for all domestic tasks and meal prep, despite me telling them that my husband works full time and has health issues and my children also have health issues that they are struggling to deal with.

    I wrote a detailed complaint addressing all of the issues and quoting the Care Act 2014 statutory guidance, and sent it to the complaints department manager.  She replied with a rather condescending letter saying that historically people had larger support packages but now council policy is to increase independence and they have to meet a minimum level of needs under The Care Act 2014. She refused to address the individual issues and said that my needs could be met with the revised support plan.  She said that I could use my benefits to pay for domestic support and that I could use my surplus direct payments funds for support to take my children to their medical appointments.  She said if I wasn't satisfied I could take my complaint to the LGO, which I have done.
  • RoddyRoddy Member Posts: 389 Pioneering
    anaqi said:
    Yes, I have.  It all started with a complaint about an OT's unprofessional behaviour.  She told me lots of things that weren't true, she interrogated me about things that were on my support plan that I hadn't even seen at that point, she told me my husband must do all the domestic chores because she had to because she was a single parent, she wanted to know why my children needed help making packed lunches and she accused me of not giving full disclosure when I said my children had food issues and mental health problems, she bullied me and left me crying. 

    Her manager did apologise for some aspects of her behaviour.  I didn't take that complaint further because at that time I found out that my budget was going to be cut and that complaint was more urgent.  When I got my support plan I emailed the community care worker and told her everything that was wrong with it, including:
    • omissions from my last support plan that stated what my outcomes were and how my husband is a supportive husband and father.
    • failing to set goals for three of my identified needs (the support plan states you must include at least one goal for each identified need)
    • failure to include my parental responsibility in record of costs (My previous support plan included "parenting support to include supporting Clair access health and community facilities." This is still relevant as my children have health conditions.  If this need is not met the responsibility will fall on my husband and that will impede his ability to work which breaches the care act.  My children had a total of 24 medical appointments in 2018 and he can't take that much time off work.)
    • giving the incorrect hourly rate in the costing
    • checking the "Decrease in need" box when there is no evidence of a decrease in need.
    I said I could not agree to the support plan.

    I was offered another review but due to health reasons I declined.  I'd already had over 3 hours of assessments which I found very stressful and they caused me a lot of pain and fatigue.  I asked if I could review a copy of my assessment so I could let them know what was right and wrong.  The complaints department said I could do a self assessment.  I again requested a copy of the original assessment.  They sent me copies of both the community care worker and OT assessments.

    The recent assessment was almost word for word the same as the one from my previous review in 2017 with a few updated details such as my children's ages and how I now have an assistance dog.  The assessment was mostly accurate but the record of costs was completely wrong and the problems I'd had with the OT were written in the "differences of opinion" box who basically said my husband and children are responsible for all domestic tasks and meal prep, despite me telling them that my husband works full time and has health issues and my children also have health issues that they are struggling to deal with.

    I wrote a detailed complaint addressing all of the issues and quoting the Care Act 2014 statutory guidance, and sent it to the complaints department manager.  She replied with a rather condescending letter saying that historically people had larger support packages but now council policy is to increase independence and they have to meet a minimum level of needs under The Care Act 2014. She refused to address the individual issues and said that my needs could be met with the revised support plan.  She said that I could use my benefits to pay for domestic support and that I could use my surplus direct payments funds for support to take my children to their medical appointments.  She said if I wasn't satisfied I could take my complaint to the LGO, which I have done.
    It looks to me that you have followed everything correctly, and although there is no 'quick' or an immediate 'fix' your case is now being dealt with by the LGO and I would forget about the council for the time being... However, they may have overlooked the care needs of your Children and that both you and Your Husband cannot address all of their care needs due to your own health issues.  You may wish to take this up (as a separate matter) with Children's Social Services, as they are TOTALLY independent of Adult Services and have to abide by different rules and legal legislations. You may find that you can obtain more financial help by going down that route. Adult Social Services, will only deal with your own case as an adult. They may/may not take your children into consideration, as to them, it's not their department. Stupid I know, but rarely does one department even bother to liaise with another., as every parent with a disabled child will know as their child goes through transition. 
  • anaqianaqi Member Posts: 54 Courageous
    Adult services have to take my parental responsibility into consideration.  It's in the Care Act but they completely missed it off my new support plan.  All they've done is offer my children young carers assessments, which is inappropriate because they do not and cannot care for me due to their health problems.  I think it comes down to what the OT (who I complained about) wrote.  My children are teenagers so they think I don't need any help with them  but I do.

    I've been caught between adult and children's services before and it's not something I'd want to do again.  I tried to ask children's services what help was available to disabled parents but they wouldn't let me speak to anyone unless I reported my own children as being at risk.  I was not prepared to do that as I was scared they would be taken away from me so I was left with no help at all.  My children have health needs but they are functioning up to a point.  They go to school but they couldn't cope with doing all the household chores and care tasks that adult services expect them to do.
  • RoddyRoddy Member Posts: 389 Pioneering
    I'm sorry to hear about the complexity of your issues. I only wish that I had all the answers, but unfortunately I don't... I know that your initial concern was having your payments reduced before your appeal to the LGO had been addressed, and I can only suggest that there's nothing more you can do for the time being... It is no compensation if you do win any backdated payments, as I can completely understand that you need those payments now, and not later. But???  It seems that only the decision made by the LGO will be the outcome one way or another, although it still may be worth searching online for independent Community Care advice. ?
  • anaqianaqi Member Posts: 54 Courageous
    Thanks!  I appreciate you comments, it's just an impossible situation caused by austerity and the under funding of social care.  There are no quick fixes for that.
  • RoddyRoddy Member Posts: 389 Pioneering
    I agree... I'm having to go through my own issues too with the various Ombudsmen and solicitors. Folks like us are sick enough, and this additional stress is a kick below the belt. Heartless, uncaring and arrogant people are making heartless, uncaring and arrogant decisions which have a huge detrimental  effect on our already fragile & vulnerable wellbeing. Many of these so-called 'cut-back councils' don't mind spending 100s of £s on refurbishing their offices for example, but when it comes to matters of serious importance they turn the other cheek. There is no logic behind their decisions, and most of them are made by poorly qualified staff, just like those that assess our disabilities which has meant thousands of people losing their much needed benefit just to stay alive... 
  • anaqianaqi Member Posts: 54 Courageous
    I just wanted to update this thread.  After complaining to the LGO in February 2019 I have now received a decision.  The LGO said council were not at fault so they cannot uphold my complaint.

    I am so angry and upset.  The whole report is based on lies but the LGO can only comment on how the council followed procedure, not how they made their decisions and breached the Care Act.

    The council said an alert was triggered because I accumulated too much money in my account in a 12 month period.  They said this proved I wasn't using all my support hours. 

    This was not true. 

    The money was accrued over a three year period.  I was permitted to keep my surplus for recruitment and the council knew about this because they actually gave me an increase to help resolve the recruitment issues I was having.  I proved the council had lied with bank statements and emails as evidence but this did not affect the ombudsman's decision.

    The council falsely claimed that my needs had decreased but my assessment was cut and pasted from the previous assessment.  Nothing had changed and it's a breach of the Care Act to cut support without there being a change in need or circumstances.  The LGO couldn't look into this because the council followed correct procedure.

    The council based their decision on the personal opinion of an OT who behaved inappropriately during the assessment.  She told me things that were not true, she told me my experiences were false, she mocked me for using a word incorrectly (I hadn't), she interrogated me about the contents of an assessment that I had not yet seen and accused me of failing to give full disclosure when I gave her a valid reason for needing support.  She bullied me and when I broke down she mocked me and questioned why my behaviour had changed.  I complained about her but her manager stuck up for her.  She couldn't comment on most of the stuff because she wasn't there and the OT denied everything.  

    The council assumed that my family could provide more support without asking if they were willing and able, despite me giving them evidence that they suffered with health problems which prevents them from providing more support than they already do.

    The council said my needs could be met in ways that are impossible, such as me using their "meals at home" service when they know that to manage a chronic health problem I require a severely restricted diet and need to eat freshly prepared food.

    The council refuses to accept that 12 weeks support from the enablement service would not be able to make me more independent despite me being chronically ill, suffering with severe pain and fatigue, and having already participated in a similar rehabilitation course which made my health and well being worse.  They were completely contradictory.  They want to teach me how to use the bus so I no longer need help accessing the community but the OT I shouldn't have bought a powerchair because my needs can be met by someone pushing me in an attendant wheelchair.  I already know how to be independent but my health problems prevent me from doing things and attempting to push my boundaries results in an increase in pain and symptoms that can leave me bedbound.  I'm in a catch 22.  They cut my support because they think I can be more independent but that has made me less independent as I can't do the things I used to do without support.

    The council refused to meet my parental responsibility because my children are teenagers and should be able to do things for themselves, but they have health issues which prevent them from doing this.  They said I'd have to contact children's services for support for them but that's not appropriate, they just need a little extra support from me and my PA.  They also said they offered young carers assessments but this is not appropriate because they don't care for me.  I don't want them labelled as young carers, it's something I feel very strongly about but they are penalising me because I'm not jumping through their hoops.  I asked what help they give young carers, they said there is a group that is 20 miles away that I can't physically get my children to (they said they wouldn't want to go anyway) and they might give them an iPad or something.  How is that supposed to help?

    The council also failed to review me after cut my support in March 2019 but still the LGO said they did nothing wrong.  I gave evidence of how my health had deteriorated since the cut but the LGO completely ignored it.

    It is a complete and utter farce.  The council have been allowed to break the law time and time again and there is nothing I can do to stop them.  The complaints system doesn't work because the managers just say they did the right thing even though they didn't.  

    If that wasn't bad enough the worst is yet to come.  The LGO have urged the council to review me as soon as possible so this whole circus is going to begin again.  I can't face another assessment and more lies.  Having to face hours of intensive questioning about every minute aspect of my life causes me severe physical and mental distress but if I don't then they won't give me any help at all.  I have lost all faith in the system and I'm having panic attacks just thinking about having to do it all again.

    I have absolutely no support and I don't even have an MP at the moment because he left to take another job. 

    I hate how this has caused me so much stress and sleepless nights.  I can't even take it to court because my husband works full time so we can't get legal aid and we have no money to pay for solicitors. 

    How can they be allowed to get away with this?



  • Chloe_ScopeChloe_Scope Scope Posts: 10,672 Disability Gamechanger
    Hi @anaqi and thank you for taking the time to update us. I'm sorry to hear about your current situation and I cannot imagine how stressful it has been. What is your current care like at the moment?

    It might be worth contacting Disability Law Service  which is a national charity that gives free legal advice about community care and employment discrimination to disabled people, their families and carers.

    If there is anything else I think might help then we'll let you know.
    Community Partner
    Scope

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  • anaqianaqi Member Posts: 54 Courageous
    I contacted the Disability Law Service 12 days ago but they haven't replied to my email.

    I've since had another review.  My husband described it as an interrogation.  A few issues were raised.

    One of the reasons the council reduced my domestic support because they expect my children (aged 13 and 15) to do household tasks.  Both children have health issues which make this difficult.  The council say they can't just go on what I said and they will NOT accept any evidence from me regarding their health problems.  They said my children must have a referral to Children's Services as it is a shared responsibility. 

    I do not think this is appropriate.  It is unlikely that Children's Services would help my children as they do not need a support package for themselves.  They can do their own personal care and they go to school but their symptoms, including chronic pain, chronic fatigue, asthma, depression and anxiety, prevent them from reliably doing the extra household tasks that the council expect them to do.  When their symptoms are at their worst they are completely incapable of doing those things which means my eligible needs for maintaining a habitable environment will go unmet.

    I see it as my responsibility as a parent to keep the house safe and clean for my son who has asthma and to support both my children with their health problems but the council still expect them to do household tasks and prepare their own packed lunches for school (even though they both have issues with food which makes this difficult too).  I think they are passing the buck onto Children's Services so they don't have to pay for my care.

    We also debated occupational therapy and the enablement service.  I am chronically ill and disabled, I already have all the equipment I need and I have the skills and knowledge to perform daily tasks, I just can't physically do them by myself without risking injury or making my pain and symptoms worse.  The council said I have to see the OT because it's about having the evidence behind it.  It's a case of guilty until proven innocent.  I have to prove that I can't do things for myself and that I need the help and support before they will even think about allocating a budget.  They also said they have to promote independence.  I don't want to rely on people to do things but I don't have a choice.

    A slightly worrying issue was them deciding to bring in the continence team.  I have chronic bladder problems but no issues with continence.  I was previous assessed as needing 30 minutes support at lunch time for meal prep and assistance to go to the toilet if necessary.  The social worker said she would get the continence team to see me because I said sometimes I find it physically difficult to get to the toilet when my symptoms are very bad.  I've never had a toilet accident, I just need someone to make sure I get to the toilet safely and help me if I need it.  I don't want to be forced into wearing incontinence pads just so they can cut a few minutes a day off my care package.  

    I feel completely worn down by everything.  It's seriously affecting my physical and mental health.  They are supposed to help but it seems like they are doing everything they possibly can to cut my support and make me less independent.  My PA already said I have no life at all compared to most health and able bodied people but any kind of normality is too much to ask for.  I don't know who to turn to for help and advice.  I think what the council are doing is wrong but I can't afford a lawyer to fight them on this.


  • WhileIBreathIHopeWhileIBreathIHope Member - under moderation Posts: 216 Pioneering
    anaqi said:
    I've been doing some more research and it looks like the local authority are a law unto themselves.  I'm panicking because I don't know how I'm going to cope when they cut my budget next week.

    I spoke to Citizen's Advice.  They couldn't offer any help at all.  It's not a problem they've come across before.  The recommended I speak to the Local Government Ombudsman.

    I looks like the LGO could be a complete waste of time too.  They don't actually have the power to do anything.  They can only look to see if the council has followed the complaint procedure properly.  So if the LGO complaint comes to nothing I either have to suffer with less help than I need or get myself into debt by paying for private care.  
    I used to get direct payments for a life long condition with written diagnosis and even with an independent advocate, mine was reduced to ZERO.

    As unfair and I’m sure illegal as my experience was, you may need to decide if managing with a reduction is preferable to finding your cut off completely.
    Cash flow and Austerity provide perfect excuse to cut backs.
  • RoddyRoddy Member Posts: 389 Pioneering
    anaqi said:
    I contacted the Disability Law Service 12 days ago but they haven't replied to my email.

    I've since had another review.  My husband described it as an interrogation.  A few issues were raised.

    One of the reasons the council reduced my domestic support because they expect my children (aged 13 and 15) to do household tasks.  Both children have health issues which make this difficult.  The council say they can't just go on what I said and they will NOT accept any evidence from me regarding their health problems.  They said my children must have a referral to Children's Services as it is a shared responsibility. 

    I do not think this is appropriate.  It is unlikely that Children's Services would help my children as they do not need a support package for themselves.  They can do their own personal care and they go to school but their symptoms, including chronic pain, chronic fatigue, asthma, depression and anxiety, prevent them from reliably doing the extra household tasks that the council expect them to do.  When their symptoms are at their worst they are completely incapable of doing those things which means my eligible needs for maintaining a habitable environment will go unmet.

    I see it as my responsibility as a parent to keep the house safe and clean for my son who has asthma and to support both my children with their health problems but the council still expect them to do household tasks and prepare their own packed lunches for school (even though they both have issues with food which makes this difficult too).  I think they are passing the buck onto Children's Services so they don't have to pay for my care.

    We also debated occupational therapy and the enablement service.  I am chronically ill and disabled, I already have all the equipment I need and I have the skills and knowledge to perform daily tasks, I just can't physically do them by myself without risking injury or making my pain and symptoms worse.  The council said I have to see the OT because it's about having the evidence behind it.  It's a case of guilty until proven innocent.  I have to prove that I can't do things for myself and that I need the help and support before they will even think about allocating a budget.  They also said they have to promote independence.  I don't want to rely on people to do things but I don't have a choice.

    A slightly worrying issue was them deciding to bring in the continence team.  I have chronic bladder problems but no issues with continence.  I was previous assessed as needing 30 minutes support at lunch time for meal prep and assistance to go to the toilet if necessary.  The social worker said she would get the continence team to see me because I said sometimes I find it physically difficult to get to the toilet when my symptoms are very bad.  I've never had a toilet accident, I just need someone to make sure I get to the toilet safely and help me if I need it.  I don't want to be forced into wearing incontinence pads just so they can cut a few minutes a day off my care package.  

    I feel completely worn down by everything.  It's seriously affecting my physical and mental health.  They are supposed to help but it seems like they are doing everything they possibly can to cut my support and make me less independent.  My PA already said I have no life at all compared to most health and able bodied people but any kind of normality is too much to ask for.  I don't know who to turn to for help and advice.  I think what the council are doing is wrong but I can't afford a lawyer to fight them on this.


    Hi @anaqi I'm sorry to hear about your concerns, and although I'm unable to solve them for you I can at least offer you some advice perhaps.

    I would strongly suggest, subject to your mobility) that you visit your local Citizens Advice Bureau, and also your GP who may be able to refer you to a Children's Social Services worker, as I'm sure that they will be more able to assist you with this.

    Hope this helps.

    Take care - Roddy
  • RoddyRoddy Member Posts: 389 Pioneering
    anaqi said:
    I've been doing some more research and it looks like the local authority are a law unto themselves.  I'm panicking because I don't know how I'm going to cope when they cut my budget next week.

    I spoke to Citizen's Advice.  They couldn't offer any help at all.  It's not a problem they've come across before.  The recommended I speak to the Local Government Ombudsman.

    I looks like the LGO could be a complete waste of time too.  They don't actually have the power to do anything.  They can only look to see if the council has followed the complaint procedure properly.  So if the LGO complaint comes to nothing I either have to suffer with less help than I need or get myself into debt by paying for private care.  
    I used to get direct payments for a life long condition with written diagnosis and even with an independent advocate, mine was reduced to ZERO.

    As unfair and I’m sure illegal as my experience was, you may need to decide if managing with a reduction is preferable to finding your cut off completely.
    Cash flow and Austerity provide perfect excuse to cut backs.
    Roddy said:
    anaqi said:
    I contacted the Disability Law Service 12 days ago but they haven't replied to my email.

    I've since had another review.  My husband described it as an interrogation.  A few issues were raised.

    One of the reasons the council reduced my domestic support because they expect my children (aged 13 and 15) to do household tasks.  Both children have health issues which make this difficult.  The council say they can't just go on what I said and they will NOT accept any evidence from me regarding their health problems.  They said my children must have a referral to Children's Services as it is a shared responsibility. 

    I do not think this is appropriate.  It is unlikely that Children's Services would help my children as they do not need a support package for themselves.  They can do their own personal care and they go to school but their symptoms, including chronic pain, chronic fatigue, asthma, depression and anxiety, prevent them from reliably doing the extra household tasks that the council expect them to do.  When their symptoms are at their worst they are completely incapable of doing those things which means my eligible needs for maintaining a habitable environment will go unmet.

    I see it as my responsibility as a parent to keep the house safe and clean for my son who has asthma and to support both my children with their health problems but the council still expect them to do household tasks and prepare their own packed lunches for school (even though they both have issues with food which makes this difficult too).  I think they are passing the buck onto Children's Services so they don't have to pay for my care.

    We also debated occupational therapy and the enablement service.  I am chronically ill and disabled, I already have all the equipment I need and I have the skills and knowledge to perform daily tasks, I just can't physically do them by myself without risking injury or making my pain and symptoms worse.  The council said I have to see the OT because it's about having the evidence behind it.  It's a case of guilty until proven innocent.  I have to prove that I can't do things for myself and that I need the help and support before they will even think about allocating a budget.  They also said they have to promote independence.  I don't want to rely on people to do things but I don't have a choice.

    A slightly worrying issue was them deciding to bring in the continence team.  I have chronic bladder problems but no issues with continence.  I was previous assessed as needing 30 minutes support at lunch time for meal prep and assistance to go to the toilet if necessary.  The social worker said she would get the continence team to see me because I said sometimes I find it physically difficult to get to the toilet when my symptoms are very bad.  I've never had a toilet accident, I just need someone to make sure I get to the toilet safely and help me if I need it.  I don't want to be forced into wearing incontinence pads just so they can cut a few minutes a day off my care package.  

    I feel completely worn down by everything.  It's seriously affecting my physical and mental health.  They are supposed to help but it seems like they are doing everything they possibly can to cut my support and make me less independent.  My PA already said I have no life at all compared to most health and able bodied people but any kind of normality is too much to ask for.  I don't know who to turn to for help and advice.  I think what the council are doing is wrong but I can't afford a lawyer to fight them on this.


    Hi @anaqi I'm sorry to hear about your concerns, and although I'm unable to solve them for you I can at least offer you some advice perhaps.

    I would strongly suggest, subject to your mobility) that you visit your local Citizens Advice Bureau, and also your GP who may be able to refer you to a Children's Social Services worker, as I'm sure that they will be more able to assist you with this.

    Hope this helps.

    Take care - Roddy

    Have you spoken with your GP and asked for a referral to Children's Social Services? If they deem that your children are not able to support you, then this will influence the council's decision. They have a legal duty when children are involved. 
  • anaqianaqi Member Posts: 54 Courageous
    The last time I called CAB they hadn't got a clue about any of the issues I was having.  It was a complete waste of time.

    I don't want Children's Services involved.  I was forced down this route when they were small and it was a horrible experience.  I wanted to speak to someone to ask what type of help they could provide but I wasn't allowed to do that.  They said the only thing I could do was report the children whose welfare I was concerned about.  There was no way I was going to report my own children to social services.  I was not concerned about their welfare I just needed help to leave the house with them as I was disabled and my PA couldn't push my wheelchair AND their pushchair at the same time.

    My children don't need help from social services, they just need support from me, but as a disabled parent I need support to meet my parental responsibilities.  I can't imagine Children's Services giving my children a budget to pay a cleaner to do their chores for them, they'll say that's my job as a parent.  It's a catch 22 situation and I end up suffering because no-one will take responsibility.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,672 Disability Gamechanger
    edited October 2019
    Hi @anaqi, I am sorry Disability Law service is yet to get back to you and that your current situation is really tough at the moment. Here are some alternative people who could help.


    Patients Association


    Patients Association may be able to provide support and guidance. Here is some information about their helpline:

    Opening hours

    Monday to Friday from 9.30am to 5pm.

    Calls outside these times will be answered as soon as possible if you leave a message with your telephone number.

    Call us

    Our trained advisers offer free and confidential advice, information and guidance and are happy to answer your questions. 

    You can call our helpline on 0800 345 7115 (freephone number), or on 020 8423 8999.


    Advice Local

    AdviceLocal offers local advice and may highlight an organisation that is close to you.


    SEAP

    SEAP is an independent charity that provides free independent and confidential advocacy services. 

    Helpline

    You can contact your local seAp team by clicking here - or call our central number 0330 440 9000 or text SEAP to 80800.

    Opening hours:

    Monday:  10am - 5pm 
    Tuesday - Friday:  9am - 5pm
    Saturday, Sunday and Bank Holidays:  Closed

    We aim to respond to answerphone messages within 1 working day


    Please do let us know how you get on @anaqi! :)

    Community Partner
    Scope

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