Parental Involvement Network for Parents of Disabled Children

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Parental involvement network for parents of disabled children Notes from the Hunts Network

Date: 22 March 2011 Time: 10:00am – 2:00pm

Venue: Maple Centre, Huntingdon

Number of parents and carers: 10 + 2 apologies

Professionals Joining at 11am: Denis Green (DCATCH-Young Lives), Sandy Watkins (Short Breaks Service Manager), Sue Price (Occupational Therapist, Aiming High Capital Lead), Yvonne Peace (Scope Inclusion Service), Helen Phillips (CamPlay), Emma Cannon (CamPlay), Jennifer Randell (Local Government Ombudsman), Martin James (Action for Children Inclusion Team), Bob Wilson (Parent Partnership Service), Victoria Bartle (Youth Inclusion Worker)

Facilitator: Lynn Powell, pinpoint

This was the seventh parental involvement network meeting for Hunts.

Workshop values

 Everyone is valued

 We respect each other’s views

 There are no wrong answers

 Everyone will have the chance to hear and be heard

 We respect confidentiality

 Every will be able to understand what people are saying – terms and jargon

 Don’t judge anyone

1 Lynn Powell for pinpoint: March 2011 Review and feedback of key issues raised by parents

Over the last year pinpoint has been working with parents to identify key issues and has communicated these to service providers. The aim of this network meeting was to review the issues with parents, feed back to parents what we did, and ask service providers to respond to how these issues have been addressed.

For the parents only session from 10 – 11am, pinpoint highlighted the issues raised by parents across the county and the group selected a few to discuss in further detail. The issues and detail/queries raised are listed below. Responses given by service providers are in italics. Proposed actions are summarised at the end of the notes in the blue box along with any updates. Speakers’ presentations are attached separately, and relevant website links included.

1. Special Educational Needs

You said issues around learning are your top priority and there needed to be better communication with parents on supporting children with special educational needs (SEN).

We did have a SEN table at our participation lunch; encourage the SEN team to run facilitated workshops with parents to discuss issues; meet with the SEN team to talk about how they could improve communications with parents; set up a parent group at IVC.

 Schools to look at non-educational needs too, e.g. social, welfare

 What about children who don’t have a statement?

 Parent support group for all parents at Hertford run by PSA – issues about information sharing and communications at school

 100 hours – nice to know you don’t have to go through the whole assessment process

 Why don’t schools offer a gluten free diet? [this was added later]

 More control to parents proposed in new SEN Green Paper, including through personalised budgets

 Cambridgeshire to be a pathfinder (take a leading role) for the SEN Green Paper proposed reforms

2. Short breaks

You said your family needed more short breaks and you needed time out from caring responsibilities.

We did write reports on what you say and send representatives to the Every Disabled Child Matters Strategy Group; Parenting Project Board; Hunts Children With Disabilities Group; add these reports to our website

2 and let parents who can’t attend our meetings know they are there; provide opportunities for you to get together with other parents and carers to talk about the things that matter to you – you tell us they let you be an adult; support parent groups that give you a break from your caring responsibilities; and we are looking for funding to run more Parent Zone meetings.

 Situations where a parent has to go to hospital or is recovering and needs extra support – not provided because the child’s situation has not changed

 Caution from social care due to funding uncertainties

 Not enough short breaks - child with sensory issues

 Parents fear if ask for an re-assessment hours will be cut – if parents feel needs are not being supported “go for it”

 No automatic right to Carers Assessment in Children and Young People’s Services that leads to funding

 Parent groups for 19+ years [this was added later as a general comment]

3. Inclusion

You said it should be easier for families with disabled children to access local activities.

We did have an inclusion table at our participation lunch; speak to SCIP Coordinator to try and set up a SCIP parent carer card to let you access leisure centres; put a proposal to the DCATCH team to let us deliver the Bucks “Opening Minds, Opening Doors” in Cambridgeshire.

 Book more CamPlay activities at Grafham? – book ahead!!!

 Need SCIP card e.g. to access Grafham

 Parents not able to book time at Grafham for their group

 Parents not asked about their wishes by social workers – [but?] not telling parents

 Toilets to provide access for families with non-physical disabilities – parent carers to speak to Sue Price and Scope

 Companion Cycling – bring to Grafham Water (coming to Milton)

 What is the ‘art and sport’ festival in May? – Lynn check details are on pinpoint website

 Can’t find affordable childcare for teenager on autistic spectrum

 How do we know childminder is appropriately trained?

3 Lynn Powell for pinpoint: March 2011  DCATCH (Disabled Children’s Access to Childcare) can’t make childminder take on child

4. Listening at a strategic level

You said parents needed to have a voice at the highest strategic level and be involved before decisions are made.

We did have a listening table at our participation lunch; push for the appointment of Participation Champions on the Children’s Trust Board; help get parents involved in commissioning services, appointing staff, and represented on key strategic groups.

 Issues around the SEN transport letter sent out the week before dominated discussions

o “if you have a child with SEN you’re being discriminated against.”

o Parents will have to give up work – stops access to a normal life

o pinpoint to call meeting on SEN transport – we invited Judith Davies to come to meet with parents. Judith attended the South Cambs network meeting. You can read her response in the South Cambs network meeting notes. A ‘Frequently Asked Questions’ letter was sent out to respond to some of the questions and issues parents calling the service had raised during the week of the network meetings.

o Waste of money sending out letters that are not comprehensible.

o SEN transport letters both unclear – what if parent ill?

o Bus drivers knew before parents – safety issues

o Parents did not think the letter was a ‘call for views’ but something that had already been decided

pinpoint update: Judith Davies has confirmed another letter about SEN transport will be sent out in June and a copy will be sent to pinpoint. We have requested a SEN representative attend the network meeting to respond to any concerns or questions parents may have.

5. Addenbrooke’s Hospital emergency systems

You said Addenbrooke’s Hospital needed to have better systems for supporting families on arrival in hospital.

4 We did set up a parent action group; work with staff at Addenbrookes, and the Youth Parliament, to put together a passport; get the passport in place! – you will see this later

 Hunts Parent Carer Forum is providing training for health staff, e.g. around diagnosis

 Share good practice at Hinchingbrooke. The possibility of extending the passport to other hospitals is being considered.

 Expecting older children to wait

 Strategy for consultants – to avoid being patronizing

 Extend to general appointments, e.g. waiting.

The passport is now on the Addenbrooke’s website and can be downloaded, see http://www.cuh.org.uk/addenbrookes/patients/patient_information/for_p eople_with_disabilities/for_people_with_disabilities_and_their_carers_ind ex.html

6. More time to speak one-to-one to workers

You said you wanted more time at pinpoint network meetings to speak to workers.

We did change the timings for this term’s meetings so you could have more time to discuss issues with workers; get more workers to come and speak to you.

Discussion with Service Providers

Service providers joined the meeting at 11:00am. After introductions, we heard in more detail from a few of the providers regarding their service provision. Some of the providers also picked up on the issues raised by parents earlier in the meeting, as listed above.

DCATCH (Disabled Children’s Access to Childcare) – Denis Green told parents about the Childcare Brokerage Service. DCATCH is a 12 month project aimed to support parents/carers in accessing suitable childcare. It is part of the Cambridgeshire Childcare Information Service. Please see the attached presentation for details. Parents of disabled children should not pay more for their childcare than any other parent. Extra funds from the County Council pay for a top-up which is given to providers to deliver support to disabled children. Trying to persuade providers of childcare to be inclusive.

 Is this service only accessible if you work? Essentially yes. However the brokerage service is for anybody.

5 Lynn Powell for pinpoint: March 2011  Can childcare be used for a short break? Should be through a Direct Payment.

Aiming High Capital – Sue Price gave a presentation on the Aiming High capital investment that has been completed. This investment was used to support and enhance short break provisions. Investment has been made in equipment, leisure centres, parks, Grafham water, etc. Please see the attached presentation for details. Sue is also looking for parents to act as secret shoppers to help evaluate facilities and equipment and to report to her or pinpoint on the quality of service with regard to disabled children. Sue provided pinpoint with a folder including details of equipment around the Hunts area. Parents and parent groups and are welcome to borrow this.

 More of the AHDC money seems to have been spent on physical disability. My teenage son needs help but privacy as well when using a lavatory. Also issue of taking older son into ladies lavatory. Sue asked for ideas for ‘hygiene rooms’ which are non-gender specific. Screening that doesn’t impede access. The money spent has been a start but are fully aware of non-physical disabilities. Sandy said could be a good use of money this year.

pinpoint update: Sue has sent us information on a possible screen for parents to comment on. See the list of actions at the foot of these notes.

 Is the barge kitted out? It has been damaged by vandals and fire and will be renovated.

 More training of leisure centre staff is needed, especially at Ramsay. Action for Children has delivered training. It will be given to all staff at One Leisure. Martin James (Action for Children Inclusion Team) talked about training. All staff at The Junction trained, One Leisure, Art and Sport Festival staff (May). Inclusion Project provides workers to assist young people attend mainstream activities of their choosing with a view to eventually going independently, and reviewed after 6 weeks.

o My son would never be able to go unsupported. Why was he referred if the long-term aim is that he goes alone? If it’s flexible we are really looking forward to it. During the assessment the social worker should be trying to find out what the child and parents want to do. o We are not asked. We don’t always know what options are available. o Panel had put it forward but it hadn’t been explained.

 Would be good to see Companion Cycling at Grafham. There are different types of bikes which are coupled. Milton Country Park is

6 getting Companion Cycling. Lots of capital has been put into Grafham Water and feel staff have been transformed. Calm and unfazed by challenging behaviour. Determined for young people to succeed.

pinpoint update: we have met with Action for Children to plan a family day at Grafham Water on 6 August to try out the equipment and get feedback from families. Invitations will be sent through schools and via pinpoint.

 A parent found she couldn’t use the special equipment as a parent unless part of a group or organisation. Another parent agreed. Think parents should be able to access the equipment. Sandy/Sue will look into this.

 Summer playschemes not keen to take on children with special needs. Lynn encouraged parents to use the pinpoint activity rating system to let other parents know how accessible an activity was for their child and family.

Short breaks update – Sandy Watkins gave an update on Aiming High after March 2011 called ‘The Genie is out of the Bottle…’. We have asked for an electronic copy to add to the website. Parents questions and comments are below.

 What is non-specialised support? Support in a non-specialised setting such as mainstream activities or childminding for example.

 Is the 100 hours going to continue? Yes, at the moment. The service will be reviewed as it goes on.

 100 hours is not enough for a child with severe sensory problems. Parent did not feel that she was listened to during the assessment with social workers. Felt it was a battle. Some of the issues may be to do with eligibility. If at level 2 DLA [Disability Living Allowance], 100 hours will be granted. Social care funding – a greater amount of funding – comes in at level 3 DLA. There may have been some caution about whether the future budget would be secured. Now teams can plan ahead more. We do all need to keep fighting this corner to have the money for short breaks protected. We cannot be political but pinpoint can.

 There is commitment from the government to fund parent forums until 2014-15.

 People should let their social care team know if their current level of support was not sufficient. There is not an infinite budget but it is worth trying for more support.

7 Lynn Powell for pinpoint: March 2011  Some people don’t go for another assessment as they fear their hours being cut rather than increased. Couldn’t really answer without knowing the individual case.

 Can you ask for an assessment with a specialist team rather than social services? There are specialist teams, for example Douglas House for South Cambridge. A carer of an adult is entitled to an assessment and funding. A carer of a child does not automatically qualify for support and funding.

 When can you say that a child should have support to be with their peer group, for example at 17? This should be considered very early on. Should be looked at during 14+ education review and picked up around the 18th birthday.

 Parent carers have problems during hospital stays and/or recovery when they may need support to care for the child. Emergency Care is only supplied for 48 hours. This is not enough when longer-term support is needed. The GP Carers Prescription Service is another way of accessing a short break. These are one offs. There is information on GP Prescription Service on the pinpoint website.

 Are Grafham Water clubs continuing now that the project is not AHDC? Yes. Keen to build on that. Want less of a residential respite feeling at Grafham, more like a sleepover.

 Innovation fund will continue – possible opportunity for funding for small activities such as a drama group.

SEN – Sandy Watkins gave an update on behalf of the SEN team on key proposals as Cambridgeshire sees them in relation to the government’s SEN Green Paper. These are to reduce bureaucracy; make information clearer to schools and parents; more timely distribution of information; plan from 0-25 years; look at the whole picture and all transition points; greater parental choice over school placement; by 2014 the potential for a personalised budget; and more interdependence of resources, decision and assessment. Cambridgeshire has applied to be a “pathfinder” county which means being the first to pilot new projects with extra responsibility to lead the way and report on what happens. Sandy also explained the Department for Education’s vision. A copy of the presentation Jane Ryder-Richardson presented at the Cambridge City network meeting is attached. Jane also said that regarding transport to schools, decisions will be made on an individual basis via a panel.

There was little time left for discussion. Lynn gave an update before lunch:

 pinpoint has funding to provide training on parent participation to school governors; to train parents to deliver an inclusion training

8 course called “Opening Minds, Opening Doors”; participation work until end October 2011; run workshops for speech and language services; and to do some work around child poverty.

One-to-one time with providers

The meeting finished with parents having a chance to speak with service providers on an informal basis over lunch.

Parent and service provider feedback

Parents and service providers fed back their views on the meeting as follows:

Liked this – very informative, useful to gain feedback re parents needs and requirements (professional); where were the representatives from SEN? Doesn’t Huntingdon count?; really informative, thank you; disappointed that SEN transport could not being discussed by a professional; very good but too many professionals (mind too full); possibly too much to do in time possible (professional).

Didn’t like this – room hot and stuffy (professional)

Add/change this – stick to time limits – more time on parent only session pinpoint update: we have asked parents to arrive from 9.45am for the next meeting so we can start promptly at 10am.

Anything else…. – nothing added

Email feedback – I thought the meeting was great, very informative and it really inspired me. I would love to get more involved with what you do.; Well done for last week's network meeting. Your facilitation was brilliant. Keep doing what you do!

Next Meeting

The next meeting will be held on 28 June 2011, 9.45am - 2pm at the Maple Centre in Huntingdon. pinpoint actions

In response to issues raised at this meeting, we will:

1. Report findings to the Every Disabled Child Matters Strategy Group, and other strategy groups we are represented on, and to Hunts Children with Disabilities Planning Group.

2. Email network meeting notes to everyone who attended and add to pinpoint website.

9 Lynn Powell for pinpoint: March 2011 3. Find out what happens in emergency situations where extra support is needed because the parent is unable to manage their caring responsibilities but the child’s needs have not changed.

Update: A representative from the Area Social Care teams will be attending the next network meeting on 28 June, and also Mark Walton from the Disabled Children’s Emergency Care Scheme.

4. Contact Hunts area social care team about sending a representative to attend the next network meetings to respond to parents’ issues around accessing appropriate short breaks.

Update: A representative from the Hunts social care team will be attending the meeting on 28 June.

5. Follow up on issues about accessing equipment at Grafham Water with Sue Price and using pinpoint activity rating system and parent ‘mystery shoppers’.

Update: we are meeting with Sue Price and Linda Simmons of Action for Children on 9 June.

6. Sue Price to look at privacy screens for Changing Places.

Update: Sue has sent us a website link to a possible product and would like parents’ opinions and suggestions on where one could be sited as a trial that would be of benefit to them: http://www.lisclare.com/products/ward-screens/screens-product- details/wall-mounted-screen.html. Please can parents have a look at the website and email Sue with their thoughts: [email protected]

Sue also sent us this message: “It was so good to get direct feedback from parents last week, and I always enjoy their comments, even if they challenge as it makes me think and want to improve/change things.”

7. Contact Childcare Brokerage Service about availability of affordable childcare for teenagers on the autistic spectrum and childminder training.

8. Lynn to get details of training provided by Hunts Parent Carer Forum parents to health professionals.

9. Ask about local plans for future funding of short breaks from April 2012.

10. Lynn to follow up on availability of innovation funding and let groups know.