29 parents attended the group

Professionals attending

Aysegul Dirik
Gillian Goodchild
Scilla Morgan
Robert Raby
Pat Howley
Sheila Ramdular
Azhar Rahman
+ 3 interpreters

Aysegul Dirik facilitated the meeting.

1. Introductions from the speakers and parents:
Ayse welcomed everyone to the group and all present introduced themselves.

2. The DVD - Toni Dawodu, Head of Integrated Services for Disabled Children
Toni introduced the new DVD for short breaks in Hackney. It features clips from the short breaks providers newly commissioned under Aiming High [Kids, the Huddleston, Laburnum Boat Club, Resources for Autism, Whitmore Autism Resource Base, Step by Step and Ezer Loyodes], plus some short interviews with parents and with HIP. It also outlines what the core offer is (100 hours per year) and that the process of applying is via a short application form.

3. Feedback on the DVD - Richard Marks, Group Manager
Parents were asked for detailed feedback on the DVD. (NB Parent comments are bullet-pointed - Richard's responses italicised)

• Many parents could not hear as the volume was far too low.
• There should be more comments indicating the parents' point of view.
• It needs to be accessible to people who don't communicate in spoken English (e.g. signing commentary or in community languages (-Translation into community languages is already in hand)
• What are the access criteria for these short breaks? It's not on the DVD and people need to know at the outset.
• What is the provision for 1:1 sports tuition? Will there be 1:1 staffing as stipulated by law, especially in music or sport? There aren't sufficient facilities - Hackney needs a new building. (- Each provider will supply appropriate staffing levels. The new short breaks offers a menu of services and it's up to you to choose which one most suits - perhaps the DVD doesn't make this sufficiently clear).
• The DVD features activities for children: is it a break for parents too? Are there separate services for parents? (- The DVD is very specifically aimed at children's short breaks)
• Where is the children's voice? There are no young people giving their views on how much or whether they enjoy the activities provided. (-Noted)
• Is this like a 2 week holiday for children? Where will the parents be? (- The core offer can be after school, weekends or during school holidays)
• What about overnight? (- No, the DVD is only about daytime services.)
• What happened to respite care at Albion Grove? (-Albion Grove closed some years back, but this is not the point of the DVD, which is just about the universal core offer for which no assessment is needed)
• What about activities outside of the inner city? (-Some providers may look at activities/trips outside of Hackney)
• Trips? How long? Day trips not long enough, it's worth doing 2-3 days. (-Trips will be organised by providers but residential & overnight trips are different to daytime short breaks and outside the scope of the video.)
• Do you have to use these providers for your short break? (-Yes, these are the contracted services. If your child is unable to access these then we will look at something else, but the services were commissioned on the basis of the consultations with parents and children.)
• There is nothing new featured in the DVD - nothing for the most needy children who need 1:1 (comment backed by another parent who said her child attended one of the listed provisions but they cannot take him any more because of his support needs) (-This is not the appropriate forum to discuss individual cases, but contracted services should provide 1:1 staffing when needed as this is stipulated in the contract. Some of the services are new to Hackney, some pre-existing but expanding, and this mixture is to lead to a greater range and availability of activities, and all services were contracted via a competitive tendering process).
• The idea of the DVD was that it would be easier to see information on screen rather than read it, for example see the form, know who the person you need to see is: bullet points of who, how, what, where - instead the DVD is just talking heads, it doesn't impart the specific information. (-The DVD's producer said this is how to maintain people's attention rather than just "business")
• Could parents be given the written information and then the DVD?
• (parent response to above point) But isn't this losing the point of the DVD ? Surely something akin to a powerpoint presentation at the beginning, giving the bare information, would be more useful?
• Returning to 1:1 provision - what about children with complex medical needs? (- The PCT is taking a lead on a new service - a "hit-squad" for those children with high and complext physical and medical needs.) [ Pat Howley - people's needs are not a barrier. If your child has complex medical needs this is part of the process of identifying an appropriate short break - for example Kids is running a pilot scheme with a nurse and staff trained to manage feeds etc. The "Hit Squad" can help other providers meet a whole range of needs}
• Some of the providers listed have really old toys and equipment. (-We can feed this back to providers but each provider should be fun and adventurous) [Pat Howley - there may also be some capital money to replace or upgrade out-dated equipment]

• (Parent of a child with profound disabilities). People who used short breaks in the past knew what it meant, but it's different now. This 100 hours will be wasted if not all children can access it, and this is a particular problem for children who cannot go out because of their incredibly high care needs. As the break should be for child and parents, what is Hackney therefore providing for parents?
• This was endorsed by a second parent, who had two children with extremely high support needs. If children are so highly dependent, sometimes facilities are not adequate (for example a bus cannot take more than one wheelchair). She stated that many parents of profoundly disabled children are afraid to trust short break providers, especially if their children cannot communicate - they need to have confidence that providers can meet all their children's needs. In cases where carers come to the house, where is a break for the parents? Where and how does parental need or carer assessment for parents fitted into the short breaks process? If parents are not supported, they stand the risk of breaking down because of the physical and emotional pressures of caring, with consequences for their children and for social services, who then have to provide a huge amount of care. She noted that a lot of parents were not at this meeting, probably because they were taking the opportunity to catch up on sleep, having had to get up many times during the night because of their children's care needs!
  
  This parent went on to say that she and some other parents have a self-support group, since many parents are extremely isolated. They contact one another to offer each other support.

• HIP's aims and objectives (already there)
• A moving image - eg film clip of child or parent expressing their view (will do our best - will consult technical guy, otherwise will have to put up stills)
• Will HIP register as a charity? (to be discussed at a later date)
• Would like to have a signposting function to other services , eg where to go for help with DLA forms (yes, the site aims to incorporate this)
• Provision for parents to support each other. ( there will be a parent e-forum for this)
• Publish dates of meeting (Yes and in meantime there is a leaflet available at the meeting publicising the AGM and a social event for parents)
• Provide details of counselling services for parents (At the 8th May meeting we will be looking at training on coping and there is already some funding available for a few sessions. [ NB Hackney Family Backup has a leaflet on sources of cheap counselling and the Carers' Centre has some counselling services available])

• Improvement of DVD in light of parental feedback, including clarity on access criteria
• Improvement of application form in light of feedback

• HIP website to include contents as above.