Aiming High Programme
If you have been to a meeting relating to the above Government initiative, we would really appreciate a few words of summary which we will add to this page. It will be a way to inform other parents or carers what is going on and maybe let them know how they can get involved themselves.
If you have been to a meeting relating to the above Government initiative, we would really appreciate a few words of summary which we will add to this page. It will be a way to inform other parents or carers what is going on and maybe let them know how they can get involved themselves.
| PARENT CARER ACTION GROUP MEETING 27/1/2009 AIMING
HIGH Parent participation is a key part of Aiming High – HCC will not get the funding unless they can show they have consulted parents. They will be advertising for five paid part-time posts to support parent carer involvement. HEALTH
SCRUTINY Lack of /inconsistency in specialist Health Visitor provision – parents want them Loss of behaviour management service at Harper House – CAMHS not a suitable replacement for some conditions (including ASD) Lack of physio and occupational therapy service Waiting times for CDC times too long GP’s and hospital doctors often do not listen to parents – non-physical diagnoses are often not recorded on notes. Since this meeting I have been invited to a South East Herts Carers Health Forum at the Priory in Ware 5/3/2009 10-12.30. I’m not sure yet whether I will be able to go – anyone who would like to go – a good chance to raise particular issues such as those above – please e-mail me (Lucy) and I’ll forward you the details. LUCY WATTS on behalf of CHatSS 3.2.2009 |
| THE PINES RESPITE CARE OPEN EVENING 09/02/09 The Pines is a newly built with large rooms, at the moment it is a bit of a blank canvas as to the service it will offer our families. The general feeling from those attending was that it would be a 6 bedded respite unit, not assessment unit for children aged 10 to 18. The facilities are accessible for children who are wheelchair users and may need a high level of care. This service is not really available else where in the county. The facilities include activity rooms, sensory room, lounges and outside space. Upstairs are more rooms that could be put to use for community groups to use, but there is a danger it may replicate what is on offer at family centres. But there is plenty of scope for options to be explored. There is separate access to the upstairs without going through the residential unit. With the right motivation and foresight it could be a really good local resource for parents to access for respite and short breaks. I must admit I am wary about the pines development but it is better to have some say in a project than none at all, which has been the case many times before. Barbara Bennett Subsequent comments by Lucy Watts: Other respite facilites for children with SEN exist in East Herts such as Jubilee House, the PeartreeCentre (both in Welwyn Garen Centre) and now the Short Break Service at Helen Allison School but I think county had identified that the east side of East Herts is less well served that Wel/Hat and the West side of Herts and this would help this situation. I think the real issue here is whether more residential respite rather than other, perhaps more flexible types of short break, are what parents need for their families. If the Pines is taken up as part of the Aiming High budget it will take up quite a high proportion of it but will clearly only be able to serve relatively few families. If this meets the needs of our children and, as Barbara says, may also provide other facilities for carers in our area then great but we need to be clear that there are other options and allowing the Aiming High money to be placed here will close some of those down. At the PCAG meeting I did point out that in my opinion this type of respite really only works for families who 'score highly' under the HCC eligibility criteria and get a lot of overnights. Subsequent comments by Carol Kelsey: The Pines is a CSF's own facility whereas Jubilee
House and Peartree Respite are independent of CSF but have have a contract with
CSF ie they are paid by CSF to provide respite. The history of the Pines goes back 9 years when it
was first decided upon and is a PPFI (public private finance initiative)
building.
Originally
it was intended to be a replacement for Woolmer Drive in Hemel
which is not fully wheelchair friendly and even then the County knew
that it did and does not have sufficient respite for wheelchair
users. The Pines is meant to be designed for both children
with complex physical needs and those with challenging behaviour
(many of whom would have autism) BUT having been and looked at it I
have serious reservations about whether it can really cater for
challenging behaviour at all. Unfortunately we can't change things now
because of course parents weren't consulted at the time the decision
and design of The Pines was made. We have try and make the best
use of it now it is here.
It is worth pointing out though that the criteria
you need to meet to get respite at either Peartree or The Pines will be very
tight and certainly in terms of autism only for those at the most severe end of
the spectrum. What is different to Peartree is that The Pines has
upstairs space that could be used for a wider range of children and families
than those who would qualify for the 6 bed respite downstairs. |
“Eligibility
Criteria” 21ST April 2009
Speakers: Sheila Reynolds (disabled Children’s Team Children Schools and Families) Deirdre Ginnity (Children’s Commissioning Manager, Hertfordshire Primary Care Trust Eligibility Criteria are based on the impact of the disability on the carer and the child and the family. It is difficult to put it in an easily understandable booklet for parents. CSF will do carers assessment. - It may be part of the overall assessment. In some individual cases CSF may ask for ACS (Adult Care Services) to do a carer’s assessment as well. Parents should be partners in the assessment – if parents do not agree with the contents of the assessment they should not sign it. The social worker will then discuss the disagreement at the Equity Panel. Parents can list their disagreements. If the Equity Panel find against the assessment the only recourse is the Complaints Procedure Summary of Q&A: 1) Parents cannot represent themselves at the Equity Panel. It is made up of experienced staff, Head of Services, Team Managers and the social worker. 2)Although some parents felt that they had been denied an initial assessment via the Call Centre (particularly those with ASD), all referrals should go through by whatever means they are made and it will then be decided which team will take up the referral. 3)Parents also expressed concern that they are not being informed of the Eligibility Criteria at present. Social worker should have a copy of the booklet with her at the assessment and have the understanding of the criteria to inform the parents. Suggestion that the booklet be sent to parents at the time appointments are made with parents by social workers or staff for assessment to take place. 4)GP referrals do not carry more weight, the route of referral is the same regardless of who refers 5)Assessment should take 7 days (initial assessment) plus 35 working days (core assessment), but parents quoted experiences of having to wait much longer 6)Parents raised the issue of childcare for children /young people over the age of 11/12.with additional needs. Childcare is non existent. Child minders are not available. Who pays for childcare – how do parents access care? Parents of additional needs children/young people are penalised, as if children do not have additional needs they do not need childcare, once children are over 14. Working therefore is not often an option for parent carers. 7)Direct Payments - parents felt that it was a huge administrative task although for some parent carers it works very well. Parents were concerned that there was nothing else on offer if direct payments were not acceptable. 8) Out and About supports disabled children and young people in a wide range of local leisure activities. This is a service provided through CSF funded by the 513 Prevention Fund. The age group catered for is 5-13 at the moment. A referral is necessary but it can be made by anyone, parent carers, service users and statutory, private or voluntary sector. |