19 parents attended the group

Professionals attending

Pat Howley
Jenny Menzies
Sheila Ramdular
Bev Rolfe
Catherine Love
Scilla Morgan
Jurdine
Patsy - Carers centre

Bev Rolfe facilitated the meeting.

1. Introductions from the speakers and parents:

Introductions and housekeeping from Bev, Pat Howley introduced as this session's speaker.

2. Pat Howley- New money from central government

Pat explained to the group that central government has allocated £368,000 to Hackney next year and £1.2 million the following year. This money is to be spent on disabled children. Hackney have to decide how this money will be best used, Pat has designed a Questionnaire for parents to fill out in an attempt to identify their opinions. Pat pointed out to the group that £1.2 million is a lot of money, but when given widely it will become much less, there needs to be some criteria to ensure that the money is best used. Pat informed the group that this money would not radically change the services and give everyone exactly what they want. However, it will improve services and it is hoped that with parental influence it should be used for what they really want.

3. Questionnaire

The Questionnaire was given out and people broke into groups to discuss and fill them in.
Pat identified 3 key questions that he wanted the group to answer.

• 1. What is fair/right when allocating this money?
• 2. Should it be means tested?
• 3. Can you charge for these services and thus make the services more widely available?

• Group 1 felt that there should be extra provision for children who are schooled out of borough and then are not able to attend after school clubs as no one will arrange transport
• There should be an emergency provision in place should the parent be rushed to hospital and need someone to look after their child
• There should be a befriender service to go on holiday with the family to provide extra support
• Only children who receive DLA should be eligible for the new money, this would cut out the need for a social work assessment and ensure that any disabled child would benefit
• The group felt that they wouldn't mind contributing to a service if there was a reduced rate available for those on benefits. It was felt that if the child benefits, it was worth paying for.
• Group 1 felt that the services should be provided by the voluntary sector as they are 'in it for the children, not the money'

• The group felt that the cultural needs of the provision needs to be taken into account
• This group filled out their forms individually and didn't come to group decisions

• Group 3 felt that the new money should be available to all, regardless of income or benefits. It was felt that even if the family were earning, that doesn't mean that they have a disposable income and it wasn't fair that they be excluded and only people on benefits benefit.
• The group highlighted the services that they are currently receiving, many got direct payments and an after school club for at least 1 evening a week
• It was felt that specialist childminding in a mainstream crèche should be added to the choices of provision
• Many parents also felt that a supported holiday should be an option, one that the parent and child can go to with the support of a carer. Some parents felt that they would like this more than any other service.
• Parents also felt that a drop in service should be added, one where you were able to come and go and use the facilities as needed. This would have to be a specialist provision, offering informal support.
• Parents felt that any service should be self-referral, as they had waited many months/years for Dla and can have long fights to get DLA.
• The group had no opinion in regards to who ran the service, they just wanted to be assured that the service was run well

• Group 4 felt that there was a language barrier to many of these services and therefore inaccessible
• The group felt that the existing services should be improved; they did not want brand new services doing the work that the existing services should be doing. It is felt that existing services that are going well should be strengthened and grown.
• There should be emergency services provided, if the parent had a emergency and needed childcare
• 'Rich people' shouldn't have the services available to them as they could pay for the services themselves.
• These services should be provided for them, otherwise the parents will not be able to access the best carers/ clubs, also it is feared that the parents might not use the money allocated properly.