8. Social Security
More than 15 per cent (approximately 100) of participants raised the issue of social security and did so under each outcome, so that they clearly see social security as an enabler for a healthier life, choice and control, active citizenship and independence. Subthemes that emerged here included access and assessments, awareness and training, and the nature and type of social security awards.
Access and assessments
Participants spoke of the need to ensure autistic people and their families are aware of the benefits to which they may have an entitlement – several said they were unaware of what they may be able to claim and that it should not be a 'fight' to access benefits. Greater efforts should also be made to ensure the maximisation of benefit income for autistic people, while practical support should be in place to help people access social security. One participant said that, despite being a qualified professional, they still have difficulties accessing relevant support and there is still too often a culture of 'if you don't ask for it you don't get it'. The same participant said advocates have an important role to play in helping autistic people navigate the complex landscape of social security.
Information on benefits should be accessible and in 'plain' English and readily available. One participant suggested having an 'information hub' to save time, effort and stress. Another participant suggested providing audio-descriptive information or apps on benefits:
I struggle to always understand the different payments and options available on the leaflets available and I have no additional needs. Provide audio descriptive versions of advice for example or apps."
Several participants spoke of the difficulties they encountered in accessing benefits such as Personal Independence Payments and Disability Living Allowance. On the whole, participants believed the process was difficult and likely to cause stress to the applicant and their family. Some of these difficulties stemmed from misunderstandings about, and lack of training on, autism, but also from the need to travel and attend periodic face-to-face assessments, complete complex forms and meet with strangers in environments that are not autism-friendly. One participant recalled:
It took me 2.5 years to apply for PIP because I could not find anyone to help me with the application. I contacted a number of advocacy organisations. I am not able to use the phone and so it was difficult for me to even get the right form in the first place. I then needed help completing the form as it was difficult for me to understand how the generic disability questions might be answered in terms of autism. Because of the deadline on the submission of the forms and the difficulty I had in finding anyone to support me to do this I had two sets of forms which expired before I was able to complete them. I then needed an advocate who understood autism to support me at the assessment, if I had not had an excellent advocate with me I'm sure I wouldn't be receiving PIP. The whole process was so stressful I questioned whether it was worth the money. I have yet to access any other benefits because of the work involved which is currently beyond what I am able to cope with.
Other participants made more general comments about the need to simplify the system:
- 'Make the PIP and DLA benefits fair and easier to access'.
- 'Easier to get DLA/ PIP'.
- 'Make applying for DLA or PIP less stressful and easier'.
- 'Easier access to financial support through both social security payments'.
- 'Make it easier to claim PIP and Universal Credit. It is a disgrace at the moment'.
Regular re-assessment and face-to-face interviews were felt to be particularly problematic. One participant said attending face-to-face meetings can be 'humiliating' and 'frightening', while another said making new claims by phone was a 'non starter'. Interviews with strangers were described as 'ridiculous'. Application forms were described as overly complex and not covering autism, thus creating further difficulties. Some participants noted their concerns about private subcontractors being involved in the assessment stage and their staff's 'inexperience' in dealing with autistic people. More could also be done to develop digital solutions and autism-friendly forms of communications: assessments, for instance, could be conducted online and 'backed up by evidence from someone who knows [the autistic individual]'.
A number of participants noted the general lack of understanding they encounter when trying to access benefits, including among those who conduct assessments. Participants said training has a crucial role to play in promoting awareness and understanding of autism. Similarly, it is important that suitable adjustments are made to accommodate the autistic person's needs, including where the assessment takes place and who conducts it. One participant recalled the problems they had accessing benefits because autism is 'hard to describe [and can] be misunderstood':
[The] medical professionals who interviewed me had not known or understood ASD. As I result, I was homeless for 19 years, and on one occasion I had to wait for 18 months to get my PIP. On one occasion I was assessed by a physiotherapist, who did not know ASD was permanent and could not be treated.
One participant felt that a lack of understanding of autism means assessors do not know that autistic people can have high IQs but still struggle with basic tasks and with answering the questions put to them during an assessment. Some noted that they were not awarded the mobility component of PIP/ DLA despite being unable to use public transport. Much of this again comes back to understanding. As one put it:
The 'high-functioning' label can also be problematic because it tends to mean we are denied support. There are many ways in which even a 'high functioning' individual can struggle to live independently. The questions asked often aren't useful - e.g. 'can you make toast?' Well yes, I know how to cut bread and operate a toaster, but that doesn't capture the fact that 8/10 times I will get distracted, wander off, and leave the toast forgotten in the toaster, only to remember 8 hours later when I'm feeling dizzy and faint with hunger that I was supposed to have eaten it. It also doesn't account for the variability of functioning that you get with autism - one day I am able to write a reply to a consultation document, the next day someone I don't know rings the doorbell or something unexpected happens and I get distressed and struggle to talk or communicate for days.
Several participants spoke of the negative impact benefit assessments, or the possibility of them, had on their health and that of their family. One said the prospect of yearly assessments leaves their daughter unable to function or sleep, while another said the long wait for a decision on their benefit application had a 'devastating' impact on their life and mental health. A parent said the process of accessing benefits for their child was so 'exhausting' that they have simply chosen not to attempt it for their other children:
We have three children, all with autism, all with sleep issues, toileting needs etc. Applying for DLA for our eldest child was the most stressful, exhausting, upsetting process I've ever been through. The issues we face daily as a result of our son's autism paled into insignificance compared to the stress of the DLA application process.
We know that our other two children would also qualify for DLA, but I do not have the time or energy to apply for them. The stress would be completely unbearable.
So, instead, we don't buy new clothes, we eat less but make sure the kids have enough, we don't have any luxuries, we don't have days out etc.
By contrast, another participant recalled their positive experience of accessing DLA and the flexible approach taken to accommodate their autistic son. Building trust was crucial:
My son gets DLA but was unable to talk to the interviewing officer during an assessment. The man who came to the house was wonderful and completely understood why I had to represent my son. A level of trust of parents/carers is needed - that we know our children, even when they are grown up, best.
Several participants said that because autism is lifelong and cannot be cured, benefits should be awarded for life. One participant said that because autistic people can over a number of years develop coping strategies for everyday life, this does not somehow diminish the fact that autism is lifelong. As such, benefit assessments should consider only medical evidence. Several participants were clear that autistic people should have an automatic entitlement to PIP. On similar lines, autistic people in receipt of PIP should be eligible for bus passes and free local authority leisure access.
Participants raised concerns about how much was being awarded, and described how benefits could be used to allow them to be independent and active citizens. One participant, unable to work, said they were reliant on benefits to access social and leisure activities, as well as decent food. Another also said that a decent award enabled them to eat healthier foods.
Some participants noted the need for greater flexibility between receiving benefits and being in employment, so that the latter does not simply lead to a cutting off of the former. Others expressed concerns about benefits other than DLA and PIP, including Carers Allowance, which one described as a 'pittance'. Families of autistic children often have to reduce their working hours so that more should be done to help maximise their social security income – without such support the health and wellbeing of the whole family may suffer.
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