From: KELLIE JONES [kajcov@btinternet.com]
Sent: 18 February 2011 12:45
To: DWP Consultation DLAReform
Subject: ONE VOICE PARENTS GROUP IN COVENTRY
      Good  morning,

      We are responding to the consutation as a group. Our group is the ONE VOICE PARENTS GROUP IN COVENTRY,We are a group of parents who have come together to help shape services for disabled children and young people. We also aim to raise awareness of the impact of a wide range of disabilities,infulence decision makers,provide views based on personal experiences and share information and provide support to other parents and carers.

      Our parents are caring for children and young people with a variety of need, Autism,ADHD,Cerebral palsy,williams syndrome,NF1,and various other conditions,although these changes may not affect us instantaniously, they will possibly in the future.

      The views of parent/carers were obtained at group meetings,with the questions and details of the consultation provided and then people could consult on questions they thought relevant and leave their response which detailed the question they were responding too.

      I will put the response by each question number ,we hope you find our views useful.

      Q1- Parent carers felt strongly that barriers to disabled people included,lack of job opportunities,lack of social activities and lack of support to facilitate independant living.
      In some of the issues highlighted there was no provision what so ever,therefore discriminating against disabled people.

      Q2/-It was felt that there should still be 3 differing levels so all diabilities that impact on day to day life are covered,concern how this would affect individuals suffering with arthritis. There was significant concern around young people with autism and how this would affect future claims as for some the dla is supporting their lifeline to  independance and enabling them to get out and about safely.
      Having the 3 levels ensures more scope that people with differing needs get the support they require. The change could also impact on those recieving carers allowance. Also the form needs to be simplified, it can be very off putting and difficult to follow.

      Q3-Extra costs could include,transport,heating,extra for social activities as will need a carer to support as just an example. Public transport can be difficult to physical and non physically disabled for a variety of reasons, anxiety/not readily equipped/eetc.

      Q4-As outlined in question 2,concern was raised about the possibility of only having two differing rates and the reasons why.

      Q5-We discussed the need of possible automatic entitlement to benefit it was felt it would be unneccessary to repeatedly have to apply for benefit if the persons disability was likely to improve. 

      Q6-Care needs and support are invaluble to people with disabilites. It was felt many disabled people miss out on social activities and experiences and in a lot of cases age can be just a number and not represent their current and ongoing difficuties and what they need to function day to day.

      Q7-Every situation can be variable and fluctuate,but the assesment should go by the information provided and as currently stated changes in circumstance should be notified either way.

      Q8-It was felt these should not be taken into account. Aids and adaptations facilitate the persons ability to manage a task,it may take them longer to do the task and they may need help to do it,or special arrangements to complete it. It does not mean they do not require assistance or support. One comment was that you cannot go to the toilet in a wheelchair and would need assistance.

      Q9- The forms needed to be simplfied,its daunting enough thinking about what you cannot do and need assistance with. Less repetion of similar questions,form is long enough without repeating yourself.Relavant trained staff to support in filling out the forms. Information should be shared more between agencies after the young person finishes school instead of having to repeat your story to every proffesional you come into contact with.

      Q10-The person applying for the benefit if able could provide evidence and information on what support needed to function day to day. The parent/carer if person unable to articulate,and any professional agencies involved with the person. its very difficult because to comment on the needs and difficulties you need to hsve an awareness and impact the difficulty has on the person.

      Q11- Possible difficulties in face to face discussion could be that the person is unfamiliar with the individual,not fully aware of the diagnosis,impact on day to day life.
      Disabled person may need responsible adul tto facilitate,they may be unaware of their full difficuties. Is this a fair process,some people may not be able to face more grilling and just disapear off the radar,therefore not getting their needs met due to too much hoop jumping.
      Overall would this not be a more costly process for all involved.

      Q12- Different types of review for different cases, ie life long conditions should not have to go through the same review process as someone who does not have a lifelong condition,this would be an unfair process. Again different type of review process dependant upon their condition,and what support the personmay need to articulate their difficulties.

      Q13- Ensure that every claimant or carer are informed and aware of the process and what to do if circumstances change,whether they improve or decline.If people are comfortable with the process they will be more inclined to report change either way,they need to have confidence in the system.

      Q14- Who is eligible,what it coveres,where they can get assistance in filling the forms out,examples of answers to questions,support. Whether a responsible adult can claim on your behalf as you are unable to complete the claim.  A fair system.

      Q15-It should be made clear if they need to they can have a responsible adult support their application,this should be highlighted to carers so they are aware of the situation. The process should be accessable to all. CLEAR GUDELINES AND OUTCOMES.Possibly a sort of flow chart explaining the process clearer to those that would struggle.

      Q16- It was felt that additional payments should be made available for aids ad adaptions that were person centered. Aids are currently funded through the benefit they recieve and this can put additional stress on the family/young person already struggling to cope.

      Q17-Recognition of the fact that the child has increasing difficulties compared to peers and that all difficulties are looked at no matter how small they seem to the person reading the claim. Also that the child may be of a particular age bujt their day to day functioning does not represent their chronologically age. Children can be wary and scared of adults they are not familiar with ans lots of children can be very articulate and adamant they have no difficulties, this is especially noticeable in children and young people with autism. Childrens perception of things can be very different from reality and many children do  not want to be different and be or feel disabled. This does not imply they require additional assistance day to day at home and out and about for thier own safety and others,they can be oblivious to all the extra input. If information is collected from school this may not be reliable as lots of parents say the most challenges they face are at home, and schools may be in conflict with parents over relevant support and other issues.
      Familiarity, a wide range of sources for evidence and the views of parents and carers, because the childs difficulties will impact on them the most. Some people just take for granted the things there child can do,its very difficult for parents to come to terms with what their disabled child can and cannot do daily.

      Q18-DLA can be useful to prove you have a disability but often more than not you need to show evidence in addition to this that states your disability and difficulties. DLA isnt always a passport to other services but some felt that maybe it should help to secure assistance in other areas so you do not have to keep repeating yourself,or the disabled person isnt continually having to explain themselves.

      Q19- Implications could be,disabled people may not be aware of what they are entitled to or what services are available to them. Service providers would be unaware of potential assistance they can offer . For services to work collabratively information should be shared and people made aware of what is out there and available.

      Thankyou for reading our views,

      Regards,

      Kellie Jones
      On behalf of the ONE VOICE GROUP COVENTRY