Sep 272016

Please submit evidence to this enquiry by October 21st  if you use care and support or Personal Assistants or are a parent of someone who uses these services. It is important that individuals let the rapporteur know what has happened since the closure of the ILF both to new applicants in 2010 and to all in 2015 and due to the cuts to Local Authority funding.


Questionnaire on the “provision of support to persons with disabilities” – Call for submissions

The Special Rapporteur on the rights of persons with disabilities, Ms. Catalina Devandas-Aguilar, is currently preparing a study, to be presented at the 34th session of the Human Rights Council in March 2017, on the provision of support to persons with disabilities.

The Special Rapporteur welcomes inputs, in accessible formats (Word), in English, French, Russian or Spanish, from Member States, international and regional organizations, UN agencies, funds and programmes, organizations of and for persons with disabilities, civil society, national human rights institutions and other national independent mechanisms designated or established to monitor the implementation of the Convention on the Rights of Persons with Disabilities, disability or equality Ombudspersons, scholars, research institutions and policy think tanks, private sector businesses and networks, community movements, and private individuals, to provide information on the provision of support to persons with disabilities.

Submissions should be sent by e-mail to the address no later than 21 October 2016. Concise responses are encouraged, inclusive of relevant attachments where available.

Kindly indicate if you have any objections with regard to your reply being posted on this website.

Questionnaire on
 the provision of support to persons with disabilities


  1. Please provide information on the following services that are available for persons with disabilities in your country, including data on their coverage, geographic distribution and delivery arrangements, funding and sustainability, challenges and shortcoming in their implementation:
  2. Personal assistance;
  3. In-home, residential and community support;
  4. Support in decision-making, including peer support; and
  5. Communication support, including support for augmentative and alternative communication.


  1. Please explain how persons with disabilities can access information about the existing services referred to in question one, including referral procedures, eligibility criteria and application requirements.


  1. Please elaborate on how these services respond to the specific needs of persons with disabilities throughout their life cycle (infancy, childhood, adolescence, adulthood and older age) and how is service delivery ensured in the transition periods between life cycle stages.


  1. Please provide information on the number of certified sign language interpreters and deafblind interpreters available in your country.


  1. Please provide information on the existence of any partnership between State institutions and private service providers (e.g., non-governmental organizations, for-profit service providers) for the provision of support to persons with disabilities.


  1. Please describe to what extent and how are persons with disabilities and their representative organizations involved in the design, planning, implementation and evaluation of support services.


  1. Please provide any other relevant information and statistics (including surveys, censuses, administrative data, reports, and studies) related to the provision of support to persons with disabilities in your country.




[suffusion-the-author display='description']
 Posted by at 20:13

  3 Responses to “Important UN inquiry into care and support provision – respond by October 21st”

  1. My son has been trapped in the intensive care unit for 21 weeks today after a tracheostomy. The Social Work Department and the NHS are arguing over who should be liable to pay for the 24/7 care that will need to be put in place before he can come home. Meanwhile he is trapped here.

  2. Chronic health conditions. Chronic pain. Physical collapse & paralysis aggravated by stress. Intolerant of anti-depressant (& many other medications). Glomerulonephritis (intolerant of med’s to treat). M.E. & Fibro. Degenerated discs & joints. Muscle spasms. Asthma & allergies, now diagnosed officially as ‘hypersensitivity’. Was RELIANT on health programme & private treatments. Vol. work possible one afternoon/week. One day’s study/week had to be split into 2 half days (i.e. always intended to return to full time work). Campaigned for stability of Permitted Work Allowance, after gov., nearly lost me my part-time job, & this was successful for the support group at least.

    DWP accusation: We are in receipt of information about you, that suggests you are no longer entitled to DLA. This terror-technique was later found to be a LIE (DWP staff member by tel.) & hidden amongst tribunal papers & called ‘a periodic review’.

    I had only low level DLA, a pittance, but which meant my ability to survive or not. This matter is not about money, however, it is about the most horrific abuse of a helpless & most vulnerable, minority group.

    DLA removed.
    Exhausted myself through the Appeals system – EDUCATING about M.E.
    Was punished for this (caring about all of the others & generations to come), by DWP – I have the evidence – it is all written.
    Was punished for warming & feeding soup to an elderly neighbour, thrown out of hospital to DIE in his own bed, alone at home. It is all in writing.
    Two days holiday/year was called by DWP ‘she takes holidays’. LYING.
    Was punished for defending myself, against these inhumane, merciless & thankless criminals, operating inside DWP.
    Was made to attend a secret court (tribunal). Four onto one patient.
    A particularly nasty, clearly dwp trained, Dr., kept asking me about distances. I told him I do not understand such things. My Bible was on my lap. “How far did you walk? How far? How far” he kept on at me.
    DWP was present. (Security staff at the door had warned me).
    A social worker suddenly referred to some really personal matter, out of the blue & I broke down into tears.
    The (new – apparently – again, security staff had told me) Judge STOPPED THE COURT PROCEEDINGS, stating “This is cruel”.
    Break, permitted.
    Re-entered court to be told by Judge that the proceedings had finished & it would not be long before I heard the result. The (new) Judge voted along with all of the others, to remove my LIFE-LINE.
    Whilst the Judge had commented that my eye contact was good (i.e. I was not lying), this court had ruled ‘She is just very happy’. Yes! Because of you, on top of my already heavy life burdens!
    After that my health started to deteriorate even further.
    I lost all hope of full, long-term recovery, which I had been working towards for so many years already (& previously had been making very slow, progress).
    I spent four years in the most horrific poverty.
    I was so cold that my muscle spasms became intense & I could barely move.
    I was mostly confined to bed.
    I have no family support & DWP were aware of how isolated I am with my awful health problems.
    My vitamin D levels were almost zero.
    I was struggling to breathe.
    It also became known that as I was being attacked by DWP, I was also being gassed in my social housing, home.
    I was barely eating & certainly could not afford the foods my health needs.
    I was seriously isolated & became exceedingly weak with muscle wastage (Rheumatology confirmation & still no nhs action).
    My pain levels were horrific.
    My blinds & curtains remained closed & I was afraid to go out at all.
    My part-time work ended with a COT3 situation.
    I was fighting with the NHS for treatment.
    There was no help, only agony, isolation & fear.

    I became confused, could rarely even speak I was so weak, but then there was also the gas poisoning.
    Hatred for the sick/disabled was everywhere, in the press, on tv, in my family who abandoned me, amongst former friends & neighbours. It seriously felt as if I was a Jew, in nazi Germany. Several times, whilst out, I was abused. Fascism seemed to be rising all around. Government had powered up just about every thug, in the land.

    At one point, in this journey, I had set up a website online & managed to attend a few trade functions, which UKTI were also at. They liked my idea, because I wanted to give work to the sick at home, in their pyjamas, for FOOD!, God bless them, I was so worried about all of the isolated, sick. In this place also, amongst fancy lawyers, associated with gov., there was the most evil hatred for those who CANNOT help themselves – to keep them alive! Sadly, the gas poisoning finished me off & I with that idea, collapsed.
    I have not worked since.

    I was forced to complain to the nhs about my GP’s service & received a kind, helpful & supportive response.
    I rang my social housing group, begging for help, as I could not get out of bed & was in so much agony.
    Two angels arrived, who saved my life.
    ‘Independent Living’ made sure I got the PIPs I am entitled to, but not only that, they protected me, all through the horrific & terrifying DWP systems. All I could do was cry. At first, again, PIPs was refused me. Then the exhausting process of submitting evidence commenced, again. Fortunately I had demanded several consultants, which costs the nhs a fortune, whilst my conditions are really self-managing & not curable. So I was further exhausted by a mass of medical appointments.

    Then I developed thyroid dysfunction from the Quetiapine which had reduced the agony in my muscles but was killing me. I did not actually, care, except that I want to go to Heaven, so once I knew I was dying, I had to come off it.

    The treatment for M.E. is Amitriptyline. I had been using just 10mg & coping, before DWP’s attack on me & I was very slowly making some progress in health.
    After DWP’s attack, due to the depression & severe anxiety they caused me, the dose had to be increased up to about 60mg. This may be what has caused the damage to my spine & with the gas, I could no longer tolerate the only real relief for M.E., so again, my sufferings were increased to terrible proportions.

    My health remains far, far, behind what it was before DWP attacked me & I have new problems to deal with. I know I will never work full time again, now, though I am still trying to get back to part-time work. This also, may never happen now. I am busy with physio & have recently had some acupuncture, which is helping to reduce pain levels. I believe I have PTSD because of my own government doing me such immense harm, when it is supposed to protect me.

    If this country knew how great the threat of evil is, right here, they too would be terrified. Why did no-one help us? Why did everyone turn away, just as people did when the Jews were isolated, at the start of nazi Germany?

    I was told by DWP that the Secretary of State can do anything he likes & make any accusations he likes, without having to say if it is a lie or not. I have it here in writing. How terrifying is that?

    The head of the EU would not help. They told me it is an internal problem. We tried everything. No-one cared what was happening to us. We were made to feel lower than dogs. For what? Our daily courage? For praying for you? For trying to PROTECT YOU & YOUR CHILDREN & THEIRS?

    I still have no pain clinic.
    I still have no help at home (as I am paying for a car – my priority – my legs).
    I still have no ground floor accommodation (though I am waiting for some to become available & have permission for this now).
    Immunology refused a referral near home, from the Rheumatologist out of town who discharged me as the journey there was too much for me.
    I have never seen a Neurologist (which I should).
    I am still waiting for talk therapies, though I recently found an organisation called ‘Rethink’ & a very kind support worker I see once every two weeks, who has not yet abandoned me.
    Not nhs, Counselling kicked me out, recently, because I missed some appointments ‘DUE TO HEALTH PROBLEMS’ i.e. that is yet more discrimination. Why do we not call? BECAUSE WE ARE NOT CAPABLE. I phoned asap & begged & cried, but there is no Mercy. These criminals in DWP/gov have been trying really hard to extinguish Mercy, but Jesus is not extinguishable, He is ETERNAL.

    NHS has also started to lay the boot in to those in the MOST vulnerable group, i.e. Sick/Disabled & without PIPs, as they are trying not to pay their expenses to hospitals now, when they do not have enough to live on, never mind stay well on, as it is. These people ARE DYING. It is passive MURDER.

    A&E here, ALWAYS kicks us out, even when we have severe allergies & breathing problems. Even heart patients are kicked out. My Mother was kicked out DURING her heart attack & after this showed on her ECG, to die, AT HOME. She never recovered from that experience of worthlessness.

    Ambulance crew took me there just the other week. It was serotonin syndrome & my heart was under terrible strain. I was in a wheelchair, unable to walk. “I told you they would kick me out”, I said.

    I had an allergy to a prescribed medicine the other year, for 4 months I was battling to track down the problem, struggling so hard to breathe that I developed heart palpitations & the sweat was pouring from my body. I lay in bed, waiting to die, whilst someone in Canada was praying the Divine Mercy Chaplet for me. (It was a very beautiful experience). ALL DOCTORS refused me Prednisolone (because they know I want it, as it makes me well, stops my pain & gives me back my life – but they cannot find sufficient evidence to warrant it, they say), until at 8am one morning I landed at the door of ‘one’ GP, who has M.E. herself “If you do not give me Prednisolone, I am going to die. I am going to have a heart attack” I told her. By which time I needed TWO courses. I then discovered what was killing me. A mouthwash! That one is not supposed to use for long!

    Where is The Mercy?

    Does the world REALLY want to be without Him?

  3. I just read an email from Benefits and work, regarding the consultation of the government’s changes to the appeal procedures, regarding a range of proposals, that will reduce the positive outcome for claiments. They will involve on line appeals, a reduction to one person who will have no medical experience deciding the outcome of wca, pip and related appeals. The government say it will lessen the stress encountered by claimen’ts attending medical appeals. A Clerk will be able to decide whether or not an appeal can go ahead or not. They will decide if the appeal is on time, whether the appeal will be held on line or on the submitted evidence alone, or in person. An example of the changes is in routine and straightforward cases. Representation will be made on line and A judge will decide the fate of the claiment’s appeal outside of court. Again who decides whether a case is straightforward or not? A nameless person employed by the government? Another proposed cut is in the reduction of medical and disabled members in the appeal system overall. Lessening the claimen’ts chances of winning even further. The fact that there is a drastic cut in appeals being won when using the paper based system. The Scottish government has stated that it is ridiculous that 65% of cases have won their appeals. There is something wrong with the current system as in the people carrying out the medical assessment’s and dwp staff, are incapable of making a correct decision.This clearly enforces the claim that the Westminster government are hell bent on reducing the ammount of people winning their appeals. Instead of making correct decision’s the dwp and associated bodies are not saving the government money, they are adding to it. Now I know what the previous Minister for Social security meant by “There are other measures we can take to reduce the welfare bill”.This something that the United Nations will be able to look at and evaluate. How can I as a disabled person pass this information to the U N n representative? This is another reduction of our basic human rights. This government has been caught out because so many claiment’s have won their appeals and this vile and evil government want to reduce that ammount by taking drastic measures. The same as the obseen and unrealistic measures taken to reduce the ammount of people qualifying for pip and esa.

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