Dorset Adult Aspergers Support

Programme Review Newsletter

of the DAAS meeting held on

Tuesday 18th April 2017, 7.00pm
Bournemouth University, Wallisdown

WelcomeSteve Mason hosted the meeting and gave an outline of what had happened at the first Earlybird meeting. A copy of his notes is attached to this Review
Social ActivitiesSteve commented that DAAS meetings bring people together and provide opportunities for general social interactions, chit-chat, sharing ideas etc as well as hearing informative speakers and discussing issues of the day. But there is also a lighter side to life and DAAS is happy to encourage and facilitate ideas which people may have. Amy Pickford has very kindly agreed to organise a programme of social activities additional to the main meetings and others have arranged informal get-togethers. However, Steve pointed out that DAAS as an organisation can’t be responsible for what goes on at events or gatherings outside the main meeting venues as we don’t have the resources or insurance that would be necessary. But we will do whatever we can to help make things happen.
Future MeetingsAs advised the May meeting will be another Table Top Talk evening with 3 groups. There will be a group specifically for carers/supporters, facilitated by Steve; one, or two, groups for people on the spectrum to talk about particular topics – the first topic will be a set one but then the group can move on to whatever subjects it would like; a 3rd table will have a social theme with board games etc. People can choose to just listen and observe if they don’t want to talk. They can also move between tables (except the Carers table which is just for Carers)
CarersThe point had been raised that some people are uncomfortable with the term “Carer” as it doesn’t seem to represent the type of support which people on the spectrum may require. Steve, pointed out, however, that it is used by officialdom and incorporated into various types of legislation and therefore needs to be used from time to time. We do, however, try to use alternative words whenever we can and the term relevant.
Sensory TableThis has been proposed previously and the Directors are investigating suitable items. If there are particular products which people have used and would recommend please let one of the Directors know.
My Life with Autism6th May 6.00 – 9.00pm Dorchester St Mary’s Church. An Autism Wessex Event sub-titled “Finding my Voice through Music” and featuring Sophia Grech and Duncan Honeybourne ,who as well as performing shared their personal stories. Information was available at the meeting for people wishing to attend.
InvitationsDan Palmer reminded the group that they are welcome to MakeGeek games nights down at Gallones Ice Cream parlour in Bournemouth, usually on Wednesdays, and to the open mic evenings on certain Fridays. Dan usually posts dates and details on the DAAS Facebook page in advance
MembershipDAAS membership year 2017 – 18 started on 1st April and Steve reminded people to renew either at the meeting or by post.
Main Event
Welfare Reform and Benefits UpdateWe welcomed back Richard Bristow, Manager of Poole Citizens Advice Bureau which helps people with everyday problems - legal problems relating to social issues such as benefits, debts, employment problems, relationship issues, tax, immigration, health issues, social welfare law – but not criminal law matters. Richard’s brief was to up-date us on his previous talk about Personal Independence Payments (PIP) which replaced/s Disability Living Allowance and then to tell us about Universal Credit.

PIP started about 3 years ago for new claimants and then about 2 years ago the process of moving DLA claimants to PIP was begun. Only a few people have been affected by the transition process so far but it will come into full effect probably this year. Richard has provided copies of his notes which are very explicit and a copy is attached to this Review. So these notes will only highlight some of the key points. PIP is a benefit for people of working age ie.16 to whatever is the relevant retirement age and who have long-term health condition or disability – defined as one expected to last at least 12 months or longer. Entitlement to PIP depends on an assessment of how the disability affects someone’s ability to live independently. The decision is made by a health professional, not a Doctor, who will consider the person’s ability to carry out certain key activities – daily living activities and mobility activities eg preparing food, washing, dressing, communication, moving around, planning journeys. PIP is based on how your condition affects you, day in and day out, not on the fact that you have a particular condition or diagnosis. PIP is paid on top of any other income, including paid employment, and is non-contributory ie. not dependent on National Insurance contributions. It’s seen as compensation for extra costs incurred because of your health issues and is not taxable. PIP is administered by the Department of Work and Pensions (DWP) and of the two components – daily living and mobility – you may be entitled to one or both and at either a standard or enhanced level. The level awarded depends on points scored on a series of descriptors or activity tests. Richard provided some paper copies of the descriptors and applicable points and these can be found on line at or Google PIP - table of activities, descriptors and points - Citizens Advice There are several other examples on line including one from Durham County Council which includes information about definitions used in the assessment (I can forward extracts on request)

To qualify for PIP the condition must have been present for at least 3 months and be expected to continue for at least another 9 months. The initial claim must be made by phone or on-line. The form can be filled in online but not printed off. The initial claim asks for basic details and then another form (hard copy) PIP2 is sent to be filled in with details of what you can and can’t do. This must be completed and returned within 28 days. The DWP have said that people classed as vulnerable may be able to have slightly longer time and such vulnerability will be assessed during the initial phone call. So it’s very important to make this clear during the initial contact. Entitlement is based on how the condition impacts on “the ability to participate in society” and this is determined usually by a face to face assessment. Currently Capita is the company carrying out assessments and providing health professionals, who are supposed to be familiar with the condition. The assessment includes observations, which begin as soon as you meet them – so avoid saying “I’m fine” . Be honest and express bad or negative feelings and don’t minimise how you feel as this will reflect in your score. Assessments are sent to the DWP decision maker to be taken onto account with the written form and any supporting evidence you have sent in. A decision will be made about the level of any award and the length of the award.

We then discussed some of the descriptors and the varying points that can be scored – the greater the difficulty the higher the score. Richard strongly recommends people should prepare by working through the descriptors and allocating scores, well before actually receiving notice about PIP. We worked through some examples together. If your experience fluctuates on different days describe those that are not so good. Ready meals might not be thought of as “preparing or cooking” meals and a microwave might be considered as an aid or appliance. Scoring yourself against each descriptor will give some idea of how your total score might look and give you time to think through how best to present yourself and answer the questions to get the higher scores. To be awarded standard rates for each component you need to score at least 8 points and for the enhanced rate it’s 12 points. You are allowed to have someone with you at the assessment and they may be able to provide evidence about some of the descriptors.

The point was raised about whether due weight is given to mental health issues as much as physical issues and there has recently been an uproar about this and the case taken up by MH Charities. For people claiming anxiety this has to be over and above what the average person would encounter. So medical evidence is needed to support this and to show that overwhelming anxiety can frequently/regularly stop you functioning and cause psychological stress. Richard recommended using the phrases on the PIP2 form to feed back information about yourself in those terms. Give examples where you can. Learn from the questions what they are looking for. He also commented that the PIP tests are much tougher than the DLA tests. They are designed to weed people out and reduce claims. For people currently in DLA they should expect a letter inviting them to transition to PIP. If they don’t reply within 28 days DLA will stop. So contact them and claim PIP, mentioning, if applicable, that you are a vulnerable person. Once DLA stops there is a 3 month waiting period before PIP can be claimed as a new claimant. It’s advisable to ask for the name of any person you speak to on the phone, to make a written note of the date and conversation, and to check if there is a reference number.

In Richard’s experience over the last 3 years several issues have arisen, mainly due to the lack of detail on the initial claim forms submitted. Assume the assessor knows very little about your condition and use the opportunity to raise their awareness of it. Give general information and then show how it applies in your case. You can add as much extra information to the form as you want. Include information on each condition if you have multiple ones and link the descriptors to the relevant condition(s). Extra evidence from GPs, specialists, carers, relatives and people who see you regularly can all be provided but it is up to you to obtain it. They can each write a letter saying what they have to do to help. A detailed diary showing what help you need, what you struggle with, what pressures you are under, what prompting you need, what anxiety you face etc over eg 2 weeks may also be helpful and submitted. A supporter’s/ carer’s diary showing help given may also be used as well as one providing evidence of your needs. But always keep a copy

If you are not given an award you can appeal. The process is in 2 steps. A letter will explain briefly why you have not qualified and will set out what points you have been given and why. You can request a Mandatory Reconsideration which must be submitted within 28 days. This can be done by phone, letter or email. An officer in the same department will re-examine the decision and 90% of decisions remain the same. The decision would only be changed if extra information is provided that is relevant and substantial and wasn’t available at the initial assessment. The decision takes up to 2 weeks and if it isn’t changed then stage 2 is to go to formal Appeal. These take 3 – 6 months and the appeal has to be lodged within one month of the Mandatory Reconsideration decision and has to be on a particular form. You can supply extra information with the Appeal or you can just state your reason (eg you failed to take account of ..... in my condition) and gather the evidence before the Appeal hearing - probably over the next 6 – 8 weeks. Additional statements from professionals or people who know you should be submitted with a covering letter citing their relevance, ideally before the hearing so the panel can read it. Payments cease following the decision but are back-dated if the Appeal succeeds. Unfortunately PIP affects other benefits so if PIP stops then other forms of income may be affected eg, disability premiums on ESA Always request a face to face appeal not a paper appeal. 80% of face to face appeals go in favour of the claimant. 80% of paper appeals fail. The panel consists of 3 independent people who try to get what is best for you. If evidence is received only on the day or is very complex the hearing may be adjourned to allow time for it to be considered.
Richard recommends that as much preparation as possible is done in advance. The CAB has a great many PIP cases it is dealing with but people are often the best experts on their own conditions. Some support groups, on-line, have prepared suggested statements and approaches that could be adapted for your own situation.

We then turned to look at Universal Credit and Richard gave us a brief introduction to the main points. Again he has produced detailed notes and these are available if you would like a copy. UC is a means tested benefit, which depends on other income or capital you have, and which is coming in for most people later this year. It currently applies in selected areas and in Poole it is applied to new claimants who are job seekers of working age and without any health problems, housing costs or family. From October it will come in for new claimants of working age in any category. Transition to UC from other benefits will happen at a later stage. It will eventually replace Income Support, Income based Job Seekers Allowance, Income related Employment Support Allowance, child tax credit, working tax credit, housing benefit and budgeting loans. UC is paid monthly in one single payment and is not taxable. It was introduced to save £12 billion. People between 18 and pension age are eligible if they have less than £16,000. A reduced amount is payable if you have savings between £6,000 and £16,000. When a claim is made the person is assigned to a work commitment group. People who are fit and healthy have to make a commitment to be looking for work. There are other groups eg single parents with children under 3, who have to take steps to prepare themselves for work. Another group is for people who can no longer do the job they used to do but could probably do a different type of work, perhaps with re-training. The final group is for Limited Capability for Work and Work Related Activity Group, for people who can’t work at all. This group receives UC without having to do anything else. To show limited capability for work there is an assessment and point scoring exercise which has the same descriptors as for current ESA and you would need to score 15 points to be assigned to this group.

Other changes are also coming in. Most benefits will be frozen completely from now until 2020. There is a benefits cap for larger families which is taken off housing support. There are also cuts to housing benefit and people under 21 are no longer eligible. From April child benefit will only apply to the 1st 2 children. UC is being brought in to save money and to simplify the benefits system. But many of the rules in the current system which cause a lot of complexity have been transferred to UC wholesale eg. residency rules. In Richard’s opinion the LCWAWRA rules are a minefield. Housing costs for mortgages have been radically overhauled – money will be loaned not given. The biggest problem for many will be the move to monthly payments. When the UC claim starts the person has to set up an account and to log in and update it on a regular basis. If this isn’t done, benefit is stopped. UC only replaces income based ESA not contributions based ESA, which will continue. It is paid to people in low paid work not just people who are unemployed, as eg. tax credits.

Group members questioned Richard both during and after his talk and shared some of their own experiences. We are very grateful to Richard for his clear explanations of these very complex subjects and for providing notes to the group. Copies of the notes for PIP are being sent out with this Review and those for Universal Credit are available to DAAS members who should email Diane at
Next DAAS Meetings Tuesday 16th May 2017
Venue: Bournemouth University Room K103
Topic: Table Top Talk – A 3 Way Symposium
Speaker: Mainly Ourselves
Thank YouA big Thank You to those of you who volunteer to help out at our meetings. We couldn’t operate without you. Please consider if You too could offer to help and maybe come along to Steve’s pre-meeting at 6.30pm before the main meeting with your ideas.