From: Fiona [fiona@autismrights.org.uk] Sent: 14 February 2011 23:41 To: DWP Consultation DLAReform Subject: Autism Rights Dear Sir/ Madam, The following is the submission of Autism Rights to the UK Government's consultation on Disability Living Allowance Fiona Sinclair Convener Autism Rights www.autismrights.org.uk ASD = Autistic Spectrum Disorder 1.  What are the problems or barriers that prevent disabled people participating in society and leading independent, full and active lives? Some people with disabilities will never lead `independent lives` and the sooner such `political correctness` is dispensed with, the better. Many people with disabilities can lead lives that are as full and active as people without disabilities - but they need more help to do so. As far as people with Autistic Spectrum Disorders (ASD) are concerned, most may not be able to hold down a job, but they can still do useful work - the government is not making this distinction, however. Whatever parents like ourselves say about the appalling inadequacy of education for autistic children, it is ignored by government. Education can only be made appropriate if there are enforceable standards that are specific to the needs of each disability, to enable the government to determine the quality or otherwise of this education and to enable parents to hold education authorities to account. At present, there is none of this and our children are denied their basic right to an education that is appropriate to their needs. On top of mass unemployment resulting from taxpayer support of a failed banking system, people with ASD are not given a chance to get the education they need to give them a chance in getting a job or work of any kind. Social enterprises like Remploy have had their funding revoked - another indication that people with disabilities are a very low priority for governments. Bigotry towards people with disabilities is ingrained in the system - it is not just `the public` who are bigoted, it is government itself. 2.  Is there anything else about Disability Living Allowance (DLA) that should stay the same? DLA should be left well alone. The only problem with DLA is that it is offputting for parents of children with disabilities, as it forces you to be totally honest about your child's handicaps - that is distressing, particularly when you know the form is written in a way that is designed to test your honesty. I didn't fill in my child's DLA form for some years, because I didn't want to `label` him for life. 3.  What are the main extra costs that disabled people face? Where do you start? With ASD, it could be everything from nappies to extra clothes washing, repairs of damage to household equipment, dietary interventions that improve health and mental functioning, special lenses or clothes that have natural fibres to ease sensory difficulties, social supports and therapies to improve functioning. 4.  The new benefit will have two rates for each component: Will having two rates per component make the benefit easier to understand and administer, while ensuring appropriate levels of support? What, if any, disadvantages or problems could having two rates per component cause? Please leave DLA well alone - the system does not need fixing, you just need to put an emphasis on disability specific standards for services such as school education and to support employment creation. 5.  Should some health conditions or impairments mean an automatic entitlement to the benefit, or should all claims be based on the needs and circumstances of the individual applying? Why should there be a need to review a disability that we are constantly informed is `life-long`? One parent is now having to regularly update his son's benefit details, even though his son is severely autistic and will (barring a miracle cure) never be able to work, let alone hold down a job. The autistic spectrum is wide, but even those who are relatively high-functioning have special needs and need the extra money. Some high-functioning people with ASD cannot maintain a full-time job, as it is too stressful. The constant emphasis on being a `team player` in employment directly discriminates against people with ASD, some of whom are highly intelligent and extremely capable people. If you individualise assessments completely, then you will have to have assessors who are extremely proficient in assessing people with ASD. Our considerable experience of health and education professionals tells us that you will not be able to train enough people to do this, let alone find enough people who are capable of delivering such training. 6.  How do we prioritise support to those people least able to live full and active lives? Which activities are most essential for everyday life? DLA is supposed to help with the additional costs of being disabled - this is going to be extremely variable, depending on the disability, Are you going to take away DLA from people with disabilities who have a job, so they will then be unable to work at all? Isn't this counterproductive? By prioritising those who are most disabled, you are giving people an incentive to claim that they are more disabled than they really are. Some of our families are getting one hour of respite a month, in spite of having a child with severe autism. 7.  How can we best ensure that the new assessment appropriately takes account of variable and fluctuating conditions? You will have to put in place some very thorough and in-depth training in ASD for your assessors. Given that most health and education professionals are clueless about ASD, and the government has failed to rectify this situation over many years, there are going to be breaches of human rights. 8.  Should the assessment of a disabled person’s ability take into account any aids and adaptations they use? What aids and adaptations should be included? Should the assessment only take into account aids and adaptations where the person already has them or should we consider those that the person might be eligible for and can easily obtain? No, no and no.   9.  How could we improve the process of applying for the benefit for individuals and make it a more positive experience? For example: How could we make the claim form easier to fill in? How can we improve information about the new benefit so that people are clear about what it is for and who is likely to qualify? A POSITIVE experience?! Are you kidding?! People with disabilities and their families appreciate that the DLA form is tough, precisely to prevent fraud. DLA has the lowest rate of fraud of any benefit, and yet you want to change it. As a parent of a child with ASD, I didn't think that DLA applied to us - I only found out about it and that I could apply through other parents. Similarly with Carer's Allowance. That is another aspect of disability benefits - the government should realise how honest the vast majority of people are. 10.  What supporting evidence will help provide a clear assessment of ability and who is best placed to provide this? Please see comments at 5 and 7 11.  An important part of the new process is likely to be a face-to-face discussion with a healthcare professional. What benefits or difficulties might this bring? Are there any circumstances in which it may be inappropriate to require a face-to-face meeting with a healthcare professional – either in an individual’s own home or another location? And just who is going to meet with a healthcare professional face to face? The person with ASD - or their carer? Do you really expect someone with a disability that is described in terms of impairments in communication and social interaction - never mind disturbances of sensory modulation - to be capable of being interviewed, particularly by a complete stranger? 12.  How should the reviews be carried out? For example: What evidence and/or criteria should be used to set the frequency of reviews? Should there be different types of review depending on the needs of the individual and their impairment/condition? Unless the government is prepared to institute disability-specific standards for ASD and for all other disabilties that are legally enforceable, you are going to be breaching the human rights of people with ASD, as there is little possibility of the vast majority of them finding any work at all. We need service providers to be accountable to us, and not just local or central government. Then we might have some actual rights. Otherwise, constantly `reviewing` the benefits of people with ASD is going to prove very expensive in terms of staffing of these reviews and in terms of legal challenges, as these reviews will simply become harassment. 13.  The system for Personal Independence Payment will be easier for individuals to understand, so we expect people to be able to identify and report changes in their needs. However, we know that some people do not currently keep the Department informed. How can we encourage people to report changes in circumstances? Don't threaten people with disabilities with sanctions for a start. 14.  What types of advice and information are people applying for Personal Independence Payment likely to need and would it be helpful to provide this as part of the benefit claiming process? Please see previous comments as regards enforceable standards - these would be of far greater help. Just be clear on the advice and information given. People also need to know what benefits they are eligible for. 15.  Could some form of requirement to access advice and support, where appropriate, help encourage the minority of claimants who might otherwise not take action? If so, what would be the key features of such a system, and what would need to be avoided? As there are virtually no services that are appropriate to the needs of people with ASD, any `requirement to access advice and support` will virtually ensure that people with ASD are rendered ineligible for PIP. As parents, we've fully assessed such `advice and support` as there is available, and it is either useless or potentially damaging. Making PIP conditional upon accessing advice or support, particularly when such advice or support is not of benefit, or is part of a system designed to share information on applicants, is particularly offensive to people with ASD and their families, given the ongoing refusal of governments to institute standards or funding for services for people with ASD. 16.  How do disabled people currently fund their aids and adaptations? Should there be an option to use Personal Independence Payment to meet a one-off cost? DLA is used for all sorts of supports - hence why you should not replace it. One-off payments might be useful for some things, but that is going to increase bureaucracy and costs and take away the flexibility of choice. 17.  What are the key differences that we should take into account when assessing children? Particularly where children with developmental disabilities such as ASD are concerned, there will be considerable changes over time to the child's functioning. Problems will very often not be picked up in childhood that are later found when the child is an adolescent or adult. So, it's not a matter of dishonesty if information is revised, it's simply that changes occur. Please see previous comments as regards enforceable disability-specific standards for basic services such as education. 18.  How important or useful has DLA been at getting disabled people access to other services or entitlements? Are there things we can do to improve these passporting arrangements? Services need to exist in the first place - without enforceable standards, taxpayers are throwing good money after bad. Personal choice is better than no choice at all. It is highly possible with these current proposals for PIP that many people will no longer be able to claim Carer's Allowance. That is both grossly unfair and politically unwise, given the vast amounts of public money saved by those who care for people with disabilities and the elderly. 19.  What would be the implications for disabled people and service providers if it was not possible for Personal Independence Payment to be used as a passport to other benefits and services? see comments at 18 20.  What different assessments for disability benefits or services could be combined and what information about the disabled person could be shared to minimise bureaucracy and duplication? Sharing of information with local authorities as regards social care assessments is both threatening and ignores the absence of any support received by people with ASD. Sharing assessments with local authorities is a threat too far. Many families of people with ASD have faced distressing battles with the financial gatekeepers of these authorities where they refuse to provide appropriate education for our children. We will go all the way to the human rights courts if such `datasharing` is enshrined within benefits legislation or regulation. Central government uses local government to avoid proper funding of services, so we're not going to permit more of this sordid behaviour. 21.  What impact could our proposals have on the different equality groups (our initial assessment of which is on page 28) and what else should be considered in developing the policy? The wide variation in types of disability is a much more important aspect of equality - and this is not featured - it should be. Disability specific standards are needed throughout disability policy and services. 22.  Is there anything else you would like to tell us about the proposals in this public consultation? SEE COMMENTS BELOW Loss of DLA /PIP means that Carer's Allowance is automatically lost too The reality is that there are no social supports provided by local authorities for families or individuals with ASD. There is a lack of knowledge of ASD amongst health professionals and an absence of such knowledge amongst public sector workers such as Job Centre and benefits staff. Why should there be a need to review a disability that we are constantly informed is `life-long`? Some worrying sections of this consultation paper:- `Accessing services and support could become a condition of receiving the benefit` - as there are virtually no services that are appropriate to the needs of people with ASD, this will virtually ensure that people with ASD are rendered ineligible for PIP Information is to be taken from professionals `who work with and support` people with disabilities - what about those who don't?! Information to be taken from `face to face` meeting betwen the individual and an `independent healthcare professional`- ! `if an individual knowingly fails to report a change that would have resulted in a reduction in benefit` And how do you intend to assess that one in relation to people whose disability centres on impairment in social interaction, communication and much else besides?! What are the penalties - a fine or prison? - Sharing of information with local authorities as regards social care assessments is both threatening and ignores the absence of any support received by people with ASD. How are you going to assess greatest need? Why should DLA be turned into this, when it is supposed to support all people with disabilities in their lives, recognising additional costs incurred? The government is not tackling the root causes of social exclusion and poverty for people with ASD - there are no ASD specific standards for any services, so even basic services like education, which could enable people with ASD to work or have a job are inappropriate to the extent of permanently damaging the life chances of people with ASD. The increase (30% over 8 years) in those claiming DLA could be partly down to increases in the numbers of people with disabilities - does the government intend to find out why these numbers have gone up, or do they just intend to claim, as they do with ASD that this is merely due to `better diagnosis` or is due to people trying to cheat the system? The change from DLA to PIP should not reflect changes in legislation. Legislation is not disability specific and is therefore mostly useless, particularly for ASD. Enforcement of legislation is virtually non-existent and the non-availability of legal aid makes even test cases impossible. Independent Living - can we leave the PC jargon to one side? Many of our children will never be able to live independently, and it is obvious that the care costs, if they were to live in their own accommodation, could be prohibitive. We don't believe that any government is going to come up with the cash for this, so you will need to invest in communal living accommodation for adults with ASD and for other adults with severe disabilities too. Equality Impacts don't take into consideration the nature of specific disabilities - this is far more important.