Agenda item

5.1  The chair introduced the item by welcoming the parents, carers and organisational representatives who had come to give evidence for the review.

5.2  Naomi Gilbert, Manager of Contact a Family Southwark was invited to give evidence to the committee first. She referred to the written evidence circulated with the papers and asked members if they had any questions.

5.3  A member asked about the impact of funding cuts and how a fully funded service differed from the service now on offer. The manager explained that Contact a Family had experienced financial cuts of 25 %, and that they are waiting to hear what will happen after April 2012. She explained that it may be that funding will fall further. The work of Contact a Family is focused on working with families; often at a time of crisis. This is often before a diagnosis has been received; this is an often a time of uncertainty and stress for parents. Families often also need particular support around times of transition, for example moving into school or college.

5.4  The manager went on to explain that Contact a Family provide a listening ear, which is very important. They also help with income maximisation. There is a focus on helping families live the kind of lives they want to live, and this often means helping families access universal services, often in a group, as this helps with access and finance. Contact a Family also provides timely, accurate information so that families do not get overwhelmed with information,  or isolated.

5.5  A member asked how many families the service worked with and the response was that there are 580 families on the database; some receive intensive support,  others just the newsletter.

5.6  A member asked how she sees the future in times of  reduction in resources. The manager recalled an uncomfortable meeting she had with Southwark Council commissioners. She reported that one good agreement was that all contracts would now be rolled into one. However there was an emphasis from officers on the under 5’s, but in her experience there are just as many problems when a child enters puberty and becomes physically and sexually mature. Often services drop off during this challenging time. In her organisational view limiting services to under 5’s is not a good idea.

5.7  A member asked the manager to comment on the reduction in funding that Contact a Family are receiving; particularly given that many families prefer accessing non statutory services such as Contact a Family. The manager commented on the importance of finding those families before they go into crisis to prevent further difficulties. The manager reported that officers are saying that unless there is a Common Assessment Framework in place we are being asked not to provide services. This creates difficulties as some people have had a bad experience of statutory services .She emphasised that it is very important that they can self refer so we can meet the needs of these families.

5.8  The manager was asked how she is coping with the cuts and she responded that they are employing fewer workers and work with less people. She explained they have moved to Cambridge House so the service is now co-located with other services. In addition to this she reported that they are being mean about who they provide a newsletter too and generally tightening their belts.

5.9  The chair welcomed Catriona Moore, a parent of a disabled child. She said she hoped everybody had had a chance to read the paper she produced [circulated with the papers]. She stated this reflects her own experience and she is not trying to speak for other parents. She went on to explain that the policy seems to be to say no the first time, then parents have to go back and make the case, then eventually you get what you need. This advantages more articulate and pushy parents. Services should be given to those who need them, not those who shout the loudest.

5.10  She spoke about her experience; explaining that her child was referred to social workers by a medical professional, but the social workers were not particularly uninterested in the medical diagnosis and  this meant that,  despite the referral, she did not receive the assessment she needed. There is a tension between the medial and social work teams, and they have no access to the records.

5.11  Catriona stated that she thought it was really important that the disability register was kept updated, even if families do not receive services.  Early help is much better.  She explained that telling services the same thing again and again is frustrating and dehumanising. She asked the committee to think about how we can do data sharing better and more sensitively. For example Sunshine House has different professional from different services using different computer systems

5.12  Harry Opoku introduced himself and explained that his boy is now 12, and when he was diagnosed 2 years ago when his family was under terrible strain. He explained that Contact a Family supported him through the referral process and helped him negotiate the system. He explained how important that is as most parents do not understand what services are available or the laws surrounding access. He went on to explain that if parents are not forceful statements will not be issued.

5.13  Harry said that he knows many parents who have broken down, been though hell; they are bouncing off the walls. He explained that the initial shock is very profound and this is the time when you need support , which is often morale support to come to terms with the diagnosis. Family support at that time is very important.

5.14  He went on to talk about the importance of communication and the difficulties his child has had at mainstream school. Often his child would be distressed because the support worker was not available, but the school had  not informed him.

5.15  A family with a young child next came to give evidence. The father explained that his daughter needs help and he has been to both the school and the hospital but has been unable to access support. The chair of the committee asked the Contact a Family to help the family and they swapped contact details.

5.16  Alison Miles, from Southwark Parent Carer Council (SPCC), introduced herself by explaining she is a parent of a disabled child and used to work for the SPCC until recently. The organisation recently has given lots of evidence to a consultant working on the Short Breaks [reports were circulated with the papers].

5.17  Alison explained that she wanted to draw the committee’s attention to a number of areas. Firstly there is a massive prevalence of autism. This is very misunderstood and families experience lots of intolerance when accessing universal services. She went on to explain that families understand that specialised services are under pressure so the recommendation was to improve universal services. Alison explained only a small proportion; around 180 out of 2500 children with disabilities, receive a service. Fair access to universal services is crucial; too often families are met with an attitude that it not helpful. Isolation is a big issue.

5.18  She recommended that this wider groups needs are addressed; for example when considering the short breaks, is it the 180 or the 2500?

5.19  Alison said that parents and carers need clear accessible information. This cannot just be on the website. She went on to explain that there needs to be more transparency, particularly on how decisions are made so that parents can be clear on the process. When it comes to assessment the needs of the entire family need to be taken in to account; particularly the needs of the siblings.

5.20  She explained that parents and carers want to work in partnership with professionals; we are a resource and feel underused. A member asked how representative the group is and Alison explained they have good representation, but they have identified gaps and these are Asian families and travellers.

5.21  A member asked Alison about health and emergencies and she explained they have looked into a health passport which describes the child’s needs and what they like and don’t like.

5.22  There was a question about siblings from a member. Alison responded that siblings do often take on a caring role and the needs of siblings are real issue.

5.23  A mother next gave evidence and explained that she has 15 year old son with complex needs. The younger brother shares a room and sometimes he has difficulty sleeping. It can be a difficult relationship. She went on to say that one issue that particularly needs highlighting  is that we cannot name an Academy school for our children, if a statement is received.

5.24  The chair invited Rory Patterson, Deputy Director, and specialist children’s services, to comment on the evidence received. He began by saying that some very powerful evidence had been received here and in the recent Short Breaks consultation. He hoped parents and carers valued the in-depth consultation that had been done.

5.25  The Deputy Director went on to explain that Common Assessment is supposed to be a tool to build up information, and is based on the concept of the team around the child. The green paper has lots of recommendations.

5.26  He went to note that families value good resources. The council is facing challenging times, however we do think we can reach out to more families, by simplifying services such as transport. 

ACTION

Draft recommendations will be drawn up based on all the evidence received, and this will then go  to officers for comment.

The final report will go to cabinet.

Everybody who has given evidence will be kept informed.