Working Families has launched a survey to find out more about the barriers facing parents/carers of disabled children who want or need to work. They know that childcare and negotiating flexible working are major challenges,and they also know that parents who give up work find it extremely difficult to get back into the labour market. To help them provide targeted support and campaign for change, they need to know much more about the barriers facing parents and carers who want to combine caring and paid work.  

 The survey can be completed online by going to http://www.surveygizmo.co.uk/s3/775921/Working-Families-2012-Survey  Postage paid hard copies can be obtained by contacting janet.mearns@workingfamilieis.org.uk (0207-0170072)  

Eamonn FettonProject Manager – Children With DisabilitiesEmail: eamonn.fetton@workingfamilies.org.ukTel: 020 7017 0062 (direct) or 020 7253 7243 (main

Scilla Morgan from Hackney Parent Partnership Service attended a workshop organised by Every Disabled Child Matters (EDCM) recently about the way decisions will be made when assessing young people for the new Personal Independence Payments (PIPs are intended to replace Disability Living Allowance from 16 years old and on into adulthood).  Scilla reports that the general consensus amongst those at the meeting was that the effect will be to restrict young people’s developing independence.

Here are Scilla`s comments:-

1. The Department for Work and Pensions DWP seems determined to press ahead with 16 year olds transitioning from DLA to PIP in October next year, at the same time as everyone else.
2. There is an undertaking that no disabled young person will lose their DLA prior to the completion of their PIP assessment, but apparently they will have to request that assessment.
3. As they stand, the descriptors attached to the 11 activities (9 for personal care and 2 for mobility) and the guidance for assessors don’t always make a lot of sense / are hard to follow and don’t carry appropriate values (there is a threshold of 8 points for basic and 12 points for enhanced payments, replacing lower, middle and higher rates).
4. Some things which were factors in assessing for DLA are absent from the new assessment, for example, night-watching, falls.
5. Some concern around the support young people will need during their assessments, for example the likelihood of their underplaying the impact of their impairments, the effect on their self esteem etc. (It’s unclear who will be exempt from a face to face assessment)
6. The suggestion that school / college provide assistance with the assessment – could be embarassing for the young person to go into intimate details in that environment
7. The mobility element has only 2 activities attached to it – one is about planning a journey, but also includes “overwhelming psychological distress” associated with journeys, and the other one about physical disability with (fairly arbitary distances; 50 and 200 metres).
8. There is no reference to the need for a social life, choices etc,
9. There is no reference to the added costs associated with developing independence and social networks, changing schools / colleges etc.

‎The consultation is open until 30 June and you may want to make your own response and / or encourage other parents to make theirs
http://www.dwp.gov.uk/policy/disability/personal-independence-payment/#con

As current coordinator, I would very much like to thank 3 parents, who were employed by Coping with CHAOS to set up and run the Forum over the last few years.  A big “Thank You” to Chris Faulder, Jean Miles and Emma Hall.  Luckily we have not lost their expertise as Jean and Emma are still members of the Forum committee and Chris is still employed by Coping with CHAOS to help parents on their helpline, through her work with face2face, and by her regular attendance at TIME4ME sessions in Poole.

Marilyn Hoskins, Coordinator and Chair

I truly believe that services for children with special needs and disabilities can only meet the needs of the children, or young people, and their families if the parents and carers are fully involved in improving and developing these services.  In my role as coordinator for the Forum I will work hard with parents and carers, together with those who provide services, to make sure that parents and carers are truly involved.

I welcome your comments at any time on poole.snforum@gmail.com or

• you can leave your views and comments on the “What`s Your View?” page of this website
• or complete the form on the ”Contact Us” page to become involved and help us to improve services for our children

Please revisit this website regularly for news of the Forum`s work and future events.  My best wishes to you all, Marilyn Hoskins