Please add a comment to the PAT Parent Consultation discussion page here.

how can pp advocate for...

everton4ever (e4e@anonymiser.com) — Sun, 9 Mar 2008 21:24:00 UT

how can pp advocate for parents? they work for the council.

The way to look at this is...

Larry Gardiner (gardinerl@hotmail.co.uk) — Mon, 10 Mar 2008 09:51:00 UT

The way to look at this is that different organisations have different things to offer. Parents with disabled children may need all of these things from time-to-time.

Parent Partnerships have been set up by government. All local authorities have a duty to provide them. Some councils buy-in a service from an independent provider and other councils employ their own staff to deliver it. To the best of my knowledge advocacy is not part of what they offer; they do, however, provide information, support and advice which is a bit different from advocacy. Partnerships provide parents with information about how to understand and how to use the SEN Code-of-Practice and the Disability Discrimination law.

There is also an independent organisation called IPSEA that provides a helpline, advice and trainingg for parents on SEN and Disability Discrimination.

Partners in Policymaking provide parents with training on how to use a Person Centred Planning process with their families, with their children and with service providers. They provide leadership training for parents who want to use these processes as policy partners with scial care providers and local authorities fund this training on Merseyside.

Support groups and issue groups put parents in touch with each other and with council officers, practicioners and services so that they can exchange information about needs. Some support groups are funded and others are independent.

Parent Advocates Together (PAT) helps parents to speak out, to mobilise, to organise and to campaign for change. We work with individual families as parent advocates, we work with groups and networks of families and we work with national advocacy and parent organisations to try and change the situation for families with disabled children. PAT is independent from government, from local authorities, from NHS trusts and we are a parent volunteer organisation.

Got my ticket see you...

dora (dora@anonymiser.com) — Mon, 10 Mar 2008 18:40:00 UT

Got my ticket see you Thursday.

Here's yet another...

ipso fatso (if@anonymiser.com) — Mon, 10 Mar 2008 18:43:00 UT

Here's yet another consultation; it's an invite to an informal meeting with the Sefton Primary Care Trust Board. The Chair and Chief Executive of Sefton Primary Care Trust are keen to meet with local community stakeholders to discuss any health-related issues of local concern or interest. To this end they are holding an informal meeting on Thursday 27th March 2008 from 12.15pm to 1.15pm, prior to our Board meeting. It will take place at the Family Life Centre, Ash Street, Southport. A light lunch will be available. Please confirm your attendance, either by emailing Nicole.jones@seftonpct.nhs.uk, or by phoning Nicole on 0151 479 6518. You are very welcome to ask a Deputy to attend if you are unable to be there in person.

EDCM is celebrating as...

EDCM (info@edcm.org.uk) — Tue, 11 Mar 2008 08:04:00 UT

EDCM is celebrating as government proposes to create a new duty on local authorities to help parents caring for disabled children by giving them breaks from their caring responsibilities.

Short breaks provide an essential opportunity for carers to recharge their batteries, and give disabled children and young people additional opportunities to access positive activities independently of their families.

EDCM and its supporters have been campaigning over the last 18 months to create a stronger legal framework to give families a right to breaks. This has included lobbying on the Children and Young Person's Bill, which this proposed new duty would amend.

The amendment would for the first time create a duty on local authorities to provide short breaks. However, EDCM and our supporters are still calling for government to go further and make short breaks available as a right to families with the greatest need.

The new duty comes on top of a major investment by the Government through the Aiming High for Disabled Children programme. £370million has been set aside to transform short break provision over the next three years (2008-11), with additional funding being released to Primary Care Trusts over the same period.

Hah!I got a ticket too.

groucho (groucho@anonymiser.com) — Tue, 11 Mar 2008 08:06:00 UT

Hah!

I got a ticket too.

My ticket has arrived too. I...

Larry Gardiner (gardinerl@hotmail.com) — Tue, 11 Mar 2008 08:24:00 UT

My ticket has arrived too. I look forward to seeing you all there. I hope to go to the PCT consultation as well. Is anyone else planning to be there?

Now that both Sefton MBC and the NHS Primary Care Trust have signed up to the EDCM Charter this means that parents and families can be involved in decision making; not JUST consultation BUT participation! There will also be government support for a genuinely independent Parent and Carer Forum in each local authority area.

PAT has signed up to the Action4Advocacy Charter. Training as a PAT parent advocate is available NOW!.

I'll be there. Anyone...

claire (claire@anonymiser.com) — Tue, 11 Mar 2008 22:57:00 UT

I'll be there. Anyone want to meet up first? There isn't a cafe or anything near. Where shall we go?

Hello Everyone,Just a quick...

Jo Crewe (jo.crewe@seftoncvs.org.uk) — Wed, 12 Mar 2008 10:20:00 UT

Hello Everyone,

Just a quick reminder that the Every Child Matters Forum is at 10 am on Wednesday 19th March at Waterside Lodge, Southport. An Agenda and relevant papers will be distributed this week.

Jo Crewe, Forum Admin Support Worker, Sefton CVS, 3tc 16 Crosby Road North, Waterloo, Liverpool, L22 0NY. Tel: 0151 928 2233 (ext. 105)

I'll be away next week,...

narky (v.todd@merseymail.com) — Wed, 12 Mar 2008 12:01:00 UT

I'll be away next week, is the ECM forum ongoing or a one-off event?

Unfortunately I've got a

Larry Gardiner (gardinerl@hotmail.co.uk) — Wed, 12 Mar 2008 12:02:00 UT

Unfortunately I've got a meeting with a parent at 9:00 but I will be at the Town Hall at 10:00.

Sefton CVS organise and...

Larry Gardiner (gardinerl@hotmail.co.uk) — Wed, 12 Mar 2008 12:06:00 UT

Sefton CVS organise and facilitate regular meetings of the Every Child Matters forum as part of the Sefton Community Empowerment Network; the dates for this year are:-

19th March

Waterside Lodge

Marine Drive, Southport

21st May

SING

Cambridge Road, Seaforth

23rd July

Waterside Lodge

Marine Drive, Southport

24th September

SING

Cambridge Road, Seaforth

26th November

Waterside Lodge

Marine Drive, Southport

Early Day Motion 1126. EDCM...

Steve Broach (steve@edcm.org.uk) — Wed, 12 Mar 2008 20:11:00 UT

Early Day Motion 1126. EDCM supports calls for independent advocacy and independent parent advocacy.

EDCM is today urging all supporters to email their MP and ask them to sign Early Day Motion 1126 which calls for more looked-after children have access to professional independent advocacy. The EDM has been tabled by Joan Humble MP, and supported by The Children's Society. Over 30 campaigning organisations, including EDCM, have signed a statement in support of independent advocacy.

13,300 disabled children are placed away from home in England. They live in hospitals, special schools and residential homes, often miles away from home. Complex disabilities can mean they have serious difficulty communicating. When they feel isolated, unhappy, lonely or unsafe, there is often no-one who understands them. Access to independent advocacy would put that right. Please email your MP now and ask them to sign the EDM. You can do this through The Children's Society's website at: www.childrenssociety.org.uk/campaigns

PAT has submitted a written...

Larry Gardiner (gardinerl@hotmail.co.uk) — Wed, 12 Mar 2008 22:02:00 UT

PAT has submitted a written question to the elected members of Sefton Council as follows:-

Parent Advocates Together (PAT) operates from premises in Derby and Linacre ward at 75 Seaforth Road and represents parents with disabled children resident in all wards across the borough of Sefton. We would like to express our appreciation to all elected members who supported our letter writing campaign to encourage Sefton MBC to adopt and implement the Every Disabled Child Matters charter for disabled children. We would now request that this area committee support the inclusion of National Indicator 54 in Sefton's LAA. We specifically would like to formally request recognition of Parent Advocates Together as an independent, autonomous and representative parent's forum and as an independent parent advocacy organisation representing Sefton parents as a member of the Sefton Advocacy Forum.

This is a message for Kate...

Webmaster (gardinerl@hotmail.co.uk) — Mon, 17 Mar 2008 17:43:00 UT

This is a message for Kate O'Brien:

We received your membership request form. Unfortunately your email address is incomplete or otherwise incorrect as follows:-

> Date: Sun, 16 Mar 2008 18:09:24 +0000

> From: mailings@mailer.sitemakerlive.com

> To: gardinerl@hotmail.co.uk

> Subject: Membership Application submission from www.pat.moonfruit.com

> Your email address > katie-lou-@hotmail.uk

> Your name > kate obrien

> Membership application > would like to know more about the pat group

Please send me an email from your account to gardinerl@hotmail.co.uk and I will ask Val Todd or Cathy Taylor to get in touch with you.

Greater Merseyside ChangeUp...

1cheerfulman (gardinerl@hotmail.co.uk) — Tue, 18 Mar 2008 08:19:00 UT

Greater Merseyside ChangeUp have organised a conference called 'Making a Case: Proving a Point'. This event is for Voluntary, Community and Faith Sector (VCFS) organisations in Greater Merseyside, to enable them to make sense of data and use it to demonstrate the need for their services. The event will be on Monday 12th May 2008 at LACE Conference Centre, Croxteth Drive from 9.30am to 3.40pm. This event is free to all VCFS organisations in Greater Merseyside, however to secure a place, you will need to send a cheque deposit for £10.00 with your booking form, which will be returned to you on the day. For more information and to book a place, contact Greater Merseyside ChangeUp Programme Management Team on 0151 9200726 ext 305.

Hello everyone,Apologies for...

Moonfruit (mailings@mailer.sitemakerlive.com) — Wed, 19 Mar 2008 17:05:00 UT

Hello everyone,

Apologies for the bombardment for emails – this will be the last one of the day, I promise! At the EDCM/LGA event I attended with Gayna on Wednesday I met a parent from Calderdale who is also the development worker for Calderdale parent & carer council. There is an event that they are holding on 23rd April specifically looking at setting up parent forums which Steve Broach will be speaking at. I thought you might be interested…

23rd April 2008 9.30am—2.30pm Heath Training Centre, Free School Lane, Halifax HX1 2PT

This one-day conference and workshop event is for parents of disabled children, senior

professionals and those working in the field of parent and young people’s participation. The

day will explore ways of listening to families and involving them in the planning, design and

delivery of local services. Organised by Calderdale Parents and Carers Council, a nationally recognised highly successful parent -led organisation working in creative ways to engage and listen to families of disabled children. Speakers include:-

Steve Broach, Every Disabled Child Matters Campaigns officer, National Council for Disabled Children

Parents from the Calderdale Parent & Carer’s Council

Calderdale Young Disabled People’s Forum

Angela Monahan, acting Chair of Calderdale Primary Care Trust

Why attend? This conference addresses the wider change programme set out in Aiming High for Disabled Children; better support for families. Stakeholders will be brought together to understand the role of parent forums and other participation mechanisms in improving the quality of services, by establishing parent councils and young people’s forums. Workshops will give parents and professionals the opportunity to work together to share challenges and solutions:-

• Setting up a Parent Council/Forum

• Developing positive self identity of young disabled people

• Accessing Mainstream Youth Provision

• Time to treat yourself - relax and de-stress

• 24 hr care and management of children with complex needs

• Establishing a Young Disabled People’s Forum

I would like to book ___ place(s) on the ‘Engaging Families - the Calderdale Way’ conference on Wednesday 23 April

Name: No of Parent places: ____

Address: No of Professional places: ____

Telephone:

Please enclose cheque made payable to Calderdale Parents and Carers Council

Please return to Calderdale Parents &Carers Council, Halifax HX1 5BY

Call 01422 343090 for more information

This conference is free to Calderdale Parents, £25 to Calderdale Professionals

£10 to parents outside Calderdale, £40 to professionals outside Calderdale

The Patient and Public...

PPIX (ppix@warwick.ac.uk) — Fri, 21 Mar 2008 13:30:00 UT

The Patient and Public Involvement Exchange (PPIX) network has been set up by the NHS Centre for Involvement (NCI) based at the University of Warwick. The NCI works with NHS staff and organisations to consult patients and the public more effectively and make changes based on their information.

What is the PPIX network?

PPIX has been designed to meet the needs of NHS staff working in Patient and Public Involvement. It provides resources such as tool kits, policy guidance, case studies and research studies that are aimed to supporting staff in a variety of roles. The site also features discussion forums, which are intended to allow people to share information, good practice and lessons learnt. It is anticipated that this will prove a very valuable aspect of the site. For this to be successful, we will need PPIX members to join in the forums and use the opportunity to network with NHS staff all over the country

Our vision

Our aim is that the Patient and Public Involvement Exchange develops into the resource that staff engaged in PPI turn to for news, information and resources.

To help us meet this aim, the site will be further developed to ensure that we can make your visits to the site as useful as possible. We would also like your feedback and suggestions as to how we can improve, so please feel free to contact us. Click on this message to go to our site.

Dear Parents, The Department

Christine Bates (christine.bates@csf.sefton.gov.uk) — Sun, 23 Mar 2008 18:35:00 UT

Dear Parents,

The Department of Health has asked the National Children's Bureau to do an on-line survey with children and young people for the child healthstrategy at very short notice and they have asked me to send it on to parents in Sefton. Due to the timescale I can only do that through the email system. The questionnaire has been designed so that children and young people can tell the Government their views on what 'being healthy' means to them and the changes they would like to see implemented to help themachieve healthier lifestyles. The questionnaire is confidential and most questions need a tick in the appropriate box. The deadline for the online survey is Tuesday 1st April and a short report will be produced in April. The link to the survey is https://www.surveymonkey.com/s.aspx?sm=i7bQGLFqYoYVX069c89NSg%3d%3d

if appropriate would you ask your children to complete the survey andplease feel free to pass on this information to any other families thatyou have contact with.

Many thanks,

Christine Bates

Communities and Local...

Ruth Whitworth (ruth.whitworth@seftoncvs.org.uk) — Tue, 25 Mar 2008 16:01:00 UT

Communities and Local Government are consulting on their draft national strategy for participatory budgets. Participatory budgeting engages people in taking decisions on the spending priorities for a defined public budget in their local area. This means engaging residents and community groups to discuss spending priorities, make spending proposals, and vote on them, as well giving local people a role in the scrutiny and monitoring of the process. Budgets that have been involved so far include:

• New Deal for Communities or Neighbourhood Management Pathfinders

• Council budgets devolved to local area committees, for example for road improvements

• Agreeing local area agreements, local strategic partnership priorities and spending

There have been 22 pilot local authorities including Newcastle, Salford and Bradford. Chapter 4 of the consultation deals with health. As community organisations working in the community, members of the Health and Social Care Forum could want to consider how we want to influence this strategy. If you would like to consider the role for the Health and Social Care Forum in this consultation contact ruth.whitworth@seftoncvs.org.uk by 4th April. A copy of the draft strategy can be found at http://www.communities.gov.uk/documents/communities/pdf/727993

GP Champions for Children -...

Geraldine Murphy (Geraldine.Murphy@knowsley.nhs.uk) — Wed, 26 Mar 2008 15:29:00 UT

GP Champions for Children - “Effective Communication and Engagement with Families”

Just to keep you abreast of where we are up to...We are making steady progress in addressing some of the Priorities identified in the Parent /Carers Priorities Report March ‘07.

Priorities 1 & 2 - Following a meeting between Jonathan Smith (CEO for CHDP) and the GP network, a number of GP’s agreed to sign up to pilot a “standard” role for the provision of a ‘Champion’ for children and young people with disabilities and complex health needs and their families. An event was held in November ‘07 involving Parent/Carers to establish the requirements of such a role. Utilising this information a report was compiled and presented at the GP network meeting 11th March ‘08. Subsequently we have now established a GP practice in Knowsley who is willing to pilot the Parent Carer Networks’ proposals.

Priorities 8, 9 &10 – (Professionals taking a Holistic Approach to Families, “Looking Beyond the Label”: Breaking the News and Professionals who Listen). Requirement: refined and improved listening skills in all professionals dealing directly with families. Proposal: that we explore the potential for influencing professional training.

As part of “Workforce Transformation” the Child Health Development Programme has developed a training course in conjunction with Liverpool John Moores University, for professionals working in Children’s services as well as parents/carers. One of the five days of taught sessions involved “Communication with Children and Families”. An entire day was dedicated to parents who delivered a training programme for professionals to enable them to develop their knowledge and skills for “Effective Communication and Engagement with families”. The training programme has been developed by June Hill (Liverpool Parent Partnership/ Liverpool Parent Carer Forum) along with other parents and was piloted within the Child health development programme course with JMU.

The parents involved shared their stories in order to provide an insight into the importance of Effective Communication with Children Young People and their Parents and Carers (Common core skills for the Children’s Workforce). Utilising the experiences and expertise of children young people and parent/carers has proven an integral part of the Workforce Transformation pilot and (from evaluations) an asset to those who attended the course. Many members of the parent/carer network feel that their contribution toward communication training for professionals is vital. If you would like to make any comments or have any ideas don’t hesitate to contact me.

Cheers, Geraldine (Geraldine.Murphy@knowsley.nhs.uk)

Better Health, Better LifeYou

Ruth Whitworth (ruth.whitworth@seftoncvs.org.uk) — Wed, 26 Mar 2008 17:07:00 UT

Better Health, Better Life

You are invited to the Community Empowerment Network's engagement event for Better Health, Better Life on Wednesday 23rd April, 10am-12:30pm at SING +.

Better Life, Better Health is the Joint Strategic Needs Assessment (JSNA) for Sefton and is a joint initiative between Sefton PCT and Council. BetterLife, Better Health looks at health and well-being for Sefton.

Ruth Whitworth, Health and Social Care Coordinator, Sefton CVS, Merseyside 3tc Centre, 16 Crosby Road North, Waterloo, Liverpool L22 0NY, Tel: 0151 9282233 ext 110

Consultation launched on the...

Larry Gardiner (gardinerl@hotmail.co.uk) — Thu, 27 Mar 2008 09:45:00 UT

Consultation launched on the registration of health and adult social care providers

The Department of Health today launched a consultation to seek views on the registration of health and adult social care providers, including the regulation of primary care services to ensure patients continue to receive safe, good quality care closer to home. 'A consultation on the framework for the registration of health and adult social care providers' puts forward proposals on which services will be required to register with the new regulator and the requirements that they will need to meet. This will include the registration of primary care services, which now provide more complex services to a high volume of patients in community settings. This received widespread support in the 2006 consultation 'The future regulation of health and adult social care in England'. Health Minister Ben Bradshaw said:

"More services than ever before are now available in GPs' surgeries and community settings, such as those traditionally provided in hospitals, so it is essential that patients know that these services are safe and are of good quality. "That is why we are proposing that primary care services are covered by the new regulator and are seeking views on how we best achieve this."

Although GPs and other healthcare professionals are individually registered by their professional governing bodies, the services provided in primary care and community settings are becoming more complex. In order to ensure that regulation is proportionate and avoids duplication, the consultation document asks how a new registration system would interact with the existing systems for monitoring GP performance, such as monitoring by the Primary Care Trust and performance reviews, to minimise the burden of regulation on primary care services.

1. The consultation will be published at http://www.dh.gov.uk/en/Consultations/Liveconsultations/DH_083625

2. The Health and Social Care Bill, currently passing through Parliament, will establish the Care Quality Commission (CQC), a new regulator for health and adult social care services. From April 2009, the CQC will bring together the experience and expertise of the three existing regulators - the Healthcare Commission, the Commission for Social Care Inspection (CSCI) and the Mental Health Act Commission - meaning a more consistent approach to regulation at a time when more and more services are crossing traditional health and social care boundaries.

3. The Care Quality Commission will seek to reduce the burden of inspection on the frontline reducing the level of duplication and bureaucracy faced by providers as well as creating a level playing field across the public and private sectors.

PLease sign this petition...

Neil Morris (News_and_Announcements@ldforums.org) — Mon, 31 Mar 2008 16:24:00 UT

PLease sign this petition calling for the Prime Minister to ratify the UN Convention on the Rights of Persons with Disabilities and sign the optional protocol without delay (see petition for full details). Members can click on this message to go direct to the petition on the Prime Ministers petitions website

http://petitions.pm.gov.uk/ratifyconvention/

Cheers

Neil Morris - Forum Facilitator

FREE Places: Hear By Right...

Jake Manning (jakem@nya.org.uk) — Wed, 2 Apr 2008 10:25:00 UT

FREE Places: Hear By Right Workshop, Manchester - Participation Works Training

Start Date/Time: 29 April 2008 09:30

Venue:Thistle Manchester

Hear by Right Workshops - Participation Works would like to invite you to a free Hear by Right participation workshop coming to your area. Places are free to Voluntary, Community and other Third Sector organisations. These workshops are designed to provide information about using the Hear by Right standards framework to draw up a map of current participation in your organisation (with children and young people), and create an agreed strategic plan for improvement. For more information about the workshops e-mail Jake Manning at jakem@nya.org.uk, or call on 0116 242 7443. For more information about Hear by Right visit www.nya.org.uk/hearbyright. For more information about Participation Works visit www.participationworks.org.uk.

‘Person Centred...

Lynne Elwell (lynne.elwell@yahoo.co.uk) — Wed, 2 Apr 2008 14:50:00 UT

‘Person Centred Culture’

We would like to invite people connected with the lives of people with learning disabilities in Central Lancashire to attend a day focussing on ‘Person Centred Culture’. We will be thinking about what ‘Valuing People Now’ says about Person Centred Planning and Approaches; what a Person Centred Culture would be like; what it would mean for people that use services, their families and friends, people that work in these services and people who commission services. The day will include presentations, good practice examples, personal stories and information stalls, along with ongoing conversations about what building a person centred culture requires from all of us. There will be a limited number of places on the day, so we are initially limiting the number of representatives each organisation can send – contact us for more details. We are inviting representatives from the networks of people that use services, families and carers, service providers and teams across Central Lancashire . If you would like to bring examples of great person centred work, or host a stall showing how you are applying person centred approaches, please contact us.

Please feel free to forward this message to anyone who might be interested.

Max Neill & Helen Smith

Person Centred Planning Coordinators: Central Lancashire

Tel 01772 644130 or 01695 585845

Deprivation of Liberty...

Tricia Nicoll (tricia.nicoll@csip.org.uk) — Sun, 6 Apr 2008 12:00:00 UT

Deprivation of Liberty Safeguards Friday 2nd May 2008 10.00am to 3.30pm

RNIB

58- 72 John Bright Street

Birmingham

B1 1BN

Tel: 0121 665 4250

The Having a Voice programme at CSIP has been commissioned by the Department of Health to do a piece of work about the Deprivation of Liberty Safeguards. These are amendments to the Mental Capacity Act 2005. They are to strengthen the rights of people who do not have capacity to agree to a particular treatment or care, but who need that

treatment for their best interests or to protect them from harm. If this treatment or care

means that they may be cared for in a way that limits their rights or freedom of action, then the Deprivation of Liberty Safeguards will apply. The Department of Health want to find out two things:

how they can make sure that people who might be affected by the Deprivation of Liberty Safeguards, and their families, know what they are and what they mean

how we can work with groups around the country so that information gets to the right people

This is a difficult thing to work out as most people who might be affected by the Deprivation of Liberty Safeguards will find it hard to understand written information, even if it is in Plain English. That’s why we need your help! We can pay for your travel expenses and any PA, support or child care costs you have. It would be really helpful if you could let us know

roughly how much this will be. I really hope that you will be able to come. Please get in touch with Lizzie Allen to let her know whether or not you are able to. Telephone Lizzie on: 01904 717266. Email her at: lizzie.allen@nimheneyh.nhs.uk. If you want to talk to me to find out more about the day, please call me on 07811 340951, or email me at tricia.nicoll@csip.org.uk.

The Future of Social Care:...

Laura Mitchell (registration.events@dh.gsi.gov.uk) — Mon, 7 Apr 2008 08:23:00 UT

The Future of Social Care: Consultation Events

The Department of Health (DH) is running three consultation events for people from all health and social care sectors and other organisations/representative groups with an interest, to focus on the future registration of health and adult social care providers. The events will be from 10:00am-3:30pm as follows: Wednesday 30th April Thistle Hotel, Birmingham Thursday 8th May Church House, London Friday 9th May Quarry House, Leeds

Background The Health and Social Care Bill introduced to Parliament in November 2007 will, subject to Parliamentary approval, pave the way for the establishment of the proposed new integrated health and adult social care regulator: the Care Quality Commission. From April 2009 it will take over the functions of the Healthcare Commission, the Commission for Social Care Inspection (CSCI) and the Mental Health Act Commission (MHAC). Please register your interest by emailing registration.events@dh.gsi.gov.uk with details of your preferred venue, name, organisation, email address, contact telephone number and any special dietary or other requirements. If you have any queries please contact Laura Mitchell on 0113 2545792. Source: Department of Health.

2008 National Learning...

Maggie Udell (maggie.udell@arcuk.org.uk) — Mon, 7 Apr 2008 08:33:00 UT

2008 National Learning Disability and Ethnicity Network Conference on Wednesday 16 April 2008 in central London

There at still some places available for the 2008 National Learning Disability and Ethnicity Network Conference on Wednesday 16 April 2008 in central London.

This year's theme is Working Together - more details are available on the above flyer or contact Pam Smith by email or call 01246 555043.

Maggie Udell

Information Officer, ARC maggie.udell@arcuk.org.uk

Local Area Committee -...

Larry Gardiner (gardinerl@hotmail.co.uk) — Mon, 7 Apr 2008 13:55:00 UT

Local Area Committee - meeting on 14th April at 6:30pm.

Councillor Kerrigan visited PAT this afternoon to report back on the most recent issues that we raised with Sefton Council. There will be an area committee meeting next Moday at the Crescent Centre in Seaforth if anyone want to come along.

PAT will be raising two questions at the meeting. A written question has already been submitted to the committee clerks and councillor Kerrigan has agreed to speak for and support a second question at this meeting. let me know if you would like to see local democracy in action.

Consultation on SENCOsThe...

Larry Gardiner (gardinerl@hotmail.co.uk) — Tue, 8 Apr 2008 17:38:00 UT

Consultation on SENCOs

The DCSF has launched a consultation on draft regulations to decide the qualifications and experience required of workers responsible for co-ordinating special educational needs provision for pupils (SENCOs). It also sets out associated functions in relation to governing bodies and outlines work to develop national accredited training for all newly appointed special educational needs co-ordinators. Views are invited until 17th June. Further information is available at Web: http://www.dcsf.gov.uk/consultations/conDetails.cfm?consultationId=1542

On Wednesday 19 March the...

CSCI (csci@cmecrm.com) — Tue, 8 Apr 2008 18:11:00 UT

On Wednesday 19 March the Guardian newspaper published a supplement, in association with CSCI, which discusses different aspects of social care and the need for reform in the care sector. Download a copy of the Guardian Social Care supplement by clicking on this message, (PDF, 3 MB, opens in a new window). Called Care That Counts, it examines how access, funding and services themselves need to change to make the system fairer and affordable. It explores many of the issues around eligibility criteria that CSCI will be looking at in our review of the Fair Access to Care Services system.

CSCI is carrying out a major review of the eligibility criteria that councils use to decide whether or not a person receives help from the council with social care services. We aim to make recommendations on how the ‘Fair Access to Care Services’ (FACS) system could be improved. Cut and paste this link into your browser to take part in this online consultation. http://www.csci.org.uk/SelectSurveyASP/TakeSurvey.asp?SurveyID=3KJm732Jl771K

Remember: They Work For...

Groucho (groucho@anonymiser.com) — Fri, 11 Apr 2008 10:42:00 UT

Remember: They Work For You!

Hi,

I just signed up to an important campaign to help make all the laws we have to obey better. I thought you might want to take action and join up too. http://www.theyworkforyou.com/freeourbills/

This is being organised by the charity who help us keep an eye on our Members of Parliament with the website www.theyworkforyou.com . They'd like information about proposed new laws to be published in a better form, so we can all hear about them before it is too late. Thank you so much for your help - forward this as an email to all your friends!

Come in No. 10 - Your time is

1cheerfulman (gardinerl@hotmail.co.uk) — Fri, 11 Apr 2008 13:08:00 UT

Come in No. 10 - Your time is up!

Petitions have long been sent to the Prime Minister by post or delivered to the Number 10 door in person. You can now both create and sign petitions on this website too, giving you the opportunity to reach a potentially wider audience and to deliver your petition directly to Downing Street. http://petitions.pm.gov.uk/

You can also use the No.10...

1cheerfulman (gardinerl@hotmail.co.uk) — Sat, 12 Apr 2008 11:16:00 UT

You can also use the No.10 website to send an email to the Prime Minister on the issues that matter to you most. However, all emails received are read by staff in Downing Street. Simply click on this posting to go there and you can send him a messge now! You will get an immediate response that looks like this:-

"Dear Mr Gardiner,

Thank you for your message to the Prime Minister which you sent through the Downing Street website (www.number-10.gov.uk). We need to confirm that we have your correct details and that the message shown at the bottom of this email is from you. Click on the link below to confirm your message. http://pm.gov.uk/Output/page8514.asp?MessageGUID=C760BEFF-D565-40F8-B023-5A9A34CE64F8 If you did not send this message, please contact the Downing Street web team at mailto:webmaster@pmo.gov.uk. Once you have confirmed your email, your message will be passed to Downing Street staff to read. Although the PM is unable to answer emails personally, all messages are read.

Thanks, The Number 10 Web Team"

Important, please note!

The PM receives many thousands of letters, faxes, and emails every week. So unfortunately it is not practical for him to respond to all of your messages. If the content of your message is private or personal, or you would like to be sure of a reply, you should write in confidence to Gordon Brown at 10 Downing Street, London SW1 2AA.

IMPORTANT CONSULTATION Dear...

Jenny Morris (jenny@jennymorris.net) — Mon, 14 Apr 2008 14:39:00 UT

IMPORTANT CONSULTATION

Dear all,

The Commission for Social Care Inspection are doing a review of the eligibility criteria for adult social services (Fair Access to Care Services)

http://www.csci.org.uk/about_us/news/review_of_eligibility_criteria.aspx Alternatively try: http://tinyurl.com/3zqay6

The Working Together Task Force are intending to do a response and would welcome any information that any of you may have about parents with learning disabilities having difficulty in getting access to adult learning disability services. For example, we know that sometimes parents are told that their needs don't meet eligibility criteria, or that their IQ is above the level that adult learning disability services use to determine eligibility. If you have any such examples, please could you email jenny@jennymorris.net. Obviously, the examples can be anonymised but the more detail you could provide the better. The consultation stage of the review finishes on 9th May so could you please send any examples by 30th April.

Thank you, Jenny Morris

Child Mental Health Services...

1cheerfulman (gardinerl@hotmail.co.uk) — Wed, 16 Apr 2008 15:06:00 UT

Child Mental Health Services : Independent Review- make your views known!

The government has established an independent review of Child and Adolescent Mental Health Services (CAMHS) which has now launched a national call for evidence. EDCM is urging its supporters to contribute to the debate to ensure CAMHS services meet the needs of disabled children and young people. The consultation closing date is 4 July 2008 and it is planned that the review will report in the autumn. For the purposes of the review, CAMHS is defined broadly, including all services that promote emotional health and well-being. This can include universal services, such as GPs, early years settings and schools, targeted services such as social care and specialist services such as community child and family mental health clinics and hospital based services. More information about the review and how to submit evidence to the consultation is at: www.dcsf.gov.uk/CAMHSreview

National Children and Adult...

1cheerfulman (gardinerl@hotmail.co.uk) — Wed, 16 Apr 2008 19:37:00 UT

National Children and Adult Services Conference 2008: Sharing the Vision – Shaping the Future

22nd – 24th Oct 2008 Liverpool Arena and Convention Centre

This event is vital to councillors, senior officers, policymakers and service managers with responsibilities for children's and adult social care in the statutory, voluntary and private sector. It is also an important opportunity for their partners in health, education and related fields and MPs with an interest in social care, children's services and education.

The conference will provide an opportunity to consider issues of health and well being for children and adults. It will include sessions on children's services, social care, choice, education, lifelong learning, innovation and excellence in service provision. Underpinning this work and a key theme for this conference will be building and supporting the staff that deliver these services. http://www.adss.org.uk/safe/events/2008/conf08.shtml

All Party Parliamentary...

Larry Gardiner (gardinerl@hotmail.co.uk) — Thu, 17 Apr 2008 15:26:00 UT

All Party Parliamentary Groups for Children, Youth Affairs, Autism, and Disability

Hi Cathy, We had a response to the letter you sent to your MP George Howarth. A similar letter has already been sent to Joe Benton MP for Bootle. We now need someone from Southport to write to Dr John Pugh MP and we need someone from Crosby to write to Claire Curtis-Thomas MP asking them to support the EDCM campaign. Please ask all your family and friends to support Parent Advocates Together and to support our Every Disabled Child Matters Campaign. Pledging support and writing to councillors and MP's can be very successful and it is so easy to do. Simply go to

http://www.edcm.org.uk/Page.asp?originx_2127rc_71558572192985f11h_200849244p

Fill in the simple form, the website will write and send your letter for you to your local MP. Take action NOW! Email your MP asking them to attend this meeting.

A joint meeting of the All Party Parliamentary Groups for Children, Youth Affairs, Autism, and Disability will be held on Tuesday 6th May, 5.00-6.00pm. The meeting will be addressed by Andrew Adonis, the Minister responsible for disabled children, who will provide an update on the progress being made in delivering ‘Aiming High for Disabled Children’, the government programme that commits £430 million over the next 3 years to transform services for disabled children and their families. EDCM is urging all its supporters to take action and email their MP asking them to attend this meeting. This is an important opportunity for MPs from all parties to quiz the Minister on the work programme to deliver ‘Aiming High’. To achieve EDCM's campaign objectives, we want Government to act…

Every family who wants one to be entitled to a key worker on diagnosis

Every extended school and children’s centre to deliver a full range of services to disabled children

A specific, enforceable duty on local authorities to assess and provide for the needs of disabled children and their families, with a minimum entitlement to family support and short break services

All schools to have effective disability equality schemes which ensure full access to every aspect of the life of the school for all disabled pupils

All education and childcare professionals to receive training to ensure that they have the skills and competencies to meet the needs of disabled children

All Primary Care Trusts, working with local Children’s Services Departments, to be required to produce a comprehensive strategy to meet the health needs of disabled children and their families

A multi-agency adolescent service in every local area for disabled young people aged 14-25, to ensure transition to adult services is planned and delivered

Regulations and guidance to ensure that no disabled child is excluded from school because their education or health needs are not met

Parents and carers to be entitled to informed and appropriate support for their parenting or

More information about our campaign can be found at

http://www.edcm.org.uk/Page.asp?originx_1541iv_31018327748132c91n_20069225732f.

Any MP who wants to show their support can do so by emailing info@edcm.org.uk.

Hello Everyone, Hope you are...

Margaret Kelly (mpip@btconnect.com) — Fri, 18 Apr 2008 08:07:00 UT

Hello Everyone, Hope you are all keeping well. First of all can I just say a big thank you for all your suggestions regarding our parent group name, we are still deciding, also to all the parents who came along to the transition day your support and input is truly appreciated, also the parents who attend the JTP meeting. An appeal to all parents; is their anybody who can come along to a transition event happening at Crosby town hall on Tuesday 22 April 10-30 – 4.00pm or even just for an hour, to help support our stand, can you please contact me if you can help, Thank you.

Liverpool parents - there is an every parent matters conference happening on the 15th May in the lace conference centre, I have reserved places so please let me know The Liverpool partnership board meeting will be held on 14th May 10-30 – 1.00pm (lunch Provided) I will be attending if you would like to come along please let me know.

Sefton parents - transition day being held at Crosby civic hall, 10.30 – 4pm, please come along and support our stand. Sefton partnership board 19th June 1.30pm -3.30pm, Bootle town hall, please let me know if you would like to attend.

Knowsley parents - partnership board date 24th May I will be attending, if any parents would like to come along don’t hesitate to contact me.

I am also writing to inform you that one of our parents Carol Hughes is going to be on television, the programme Panorama has filmed Carol talking about the school SATS system. The programme will be aired on 12th May.

Take care, Margaret Kelly - Merseyside Partners in Policymaking

Consultation - Please note...

Sharon Watts (Info@nwrywu.org.uk) — Fri, 18 Apr 2008 08:15:00 UT

Consultation - Please note the closing date for responses is now Friday 18th April 08.

Hello, The North West Regional Youth Work Unit is mapping and researching organisations which enable young people’s participation across the North West on behalf of North West ‘Together We Can’. ‘Together We Can’ is a government campaign to encourage public bodies to do more to enable people to influence local decision making. It is led by the Department for Communities and Local Government.

There are 2 stages to this process, the first being a mapping exercise. We would greatly appreciate your taking a few minutes to contribute to this stage by completing the (very brief) pro-forma attached and also if you would forward this e mail on to contacts you feel would be in a position to respond.

Should you wish to ask any questions in relation to this research please contact Dan Moxon, Regional Participation Worker at the Unit on 01925 295837.

Thanks for your support. Best wishes, Sharon Watts

NWRYWU

Unit 40, Bold Business Centree

Bold Lane, Sutton

St Helens

WA9 4TX

01925 295837

New Website Inclusion...

My Life Coordinator (mylife@kvtl.fi) — Fri, 18 Apr 2008 14:35:00 UT

New Website Inclusion Europe

The website of Inclusion Europe has been modified and re-structured to make it more complete and manageable in all its 22 languages. Please feel free to explore the different sections of the site. It will provide you with a wealth of knowledge about European disability policies, projects and events relevant to people with intellectual disabilities and their families.

In the new structure of the site, Inclusion Europe has consequently implemented the principle of accessibility for people with intellectual disabilities. For each menu item there is a translation into easy-to-understand language. You can access these accessible pages by clicking on the blue easy-to-read symbol. This website is supported by the European Community Action Programme to combat discrimination (2001-2006). This programme was established to support the effective implementation of new EU anti-discrimination legislation. The six-year Programme targets all stakeholders who can help shape the development of appropriate and effective anti-discrimination legislation and policies, across the EU-25, EFTA and EU candidate countries.

The new site gives you also better opportunities for giving us your opinion on the site and for contributing to the contents of it. Please use the buttons “Your opinion” and “Your contribution” for this. The Action Programme has three main objectives. These are:

to improve the understanding of issues related to discrimination

to develop the capacity to tackle discrimination effectively

to promote the values underlying the fight against discrimination

For more information, please see:

http://ec.europa.eu/comm/employment_social/fundamental_rights/index_en.htm

EP Written Declaration...

1cheerfulman (gardinerl@hotmail.co.uk) — Sun, 20 Apr 2008 12:38:00 UT

EP Written Declaration 0024/2008 on the Discrimination and Institutionalisation of Children with Disabilities in the EU - Please contact your MEP before 15 July 2008

The Written Declaration 0024/2008 on the Discrimination and Institutionalisation of Children with Disabilities in the EU was opened for signatures at the European Parliament on 9 April. The Declaration calls for the allocation of EU funds to ensure that all Member States can provide appropriate and inclusive care for children. And to support deinstitutionalisation through alternatives like community based services, including education and recreational facilities.

The European Parliament Rules of Procedure (Rule 116) provide for a procedure of written declarations. According to the procedure, up to five MEPs may submit a written declaration on a matter falling within the EU sphere of activities. Any member may add their signature to a declaration within three months after its publication. Where a declaration is signed by the majority of MEPs, it shall be forwarded to the institutions concerned together with the names of the signatories. A minimum of 393 MEP signatures are required before 15 July 2008 for the Declaration to be officially adopted by the European Parliament. Please contact your MEP to ensure they sign the Declaration before the deadline!

Commission launches public...

European Commission: Your Voice (ec-yourvoice@ec.europa.eu) — Sun, 20 Apr 2008 12:50:00 UT

Commission launches public consultation on new anti-discrimination measures

The European Commission has today launched an online consultation on combating discrimination in the Member States and at EU level.

The public consultation will help the Commission plan new measures to tackle discrimination on the basis of gender, religion, belief, disability, age or sexual orientation 0c06 in areas beyond the job market. It comes as the European Year of Equal Opportunities for All – which aims to raise people's awareness of their rights to equal treatment and promote a broad debate on the benefits of diversity to society – enters full swing.

http://ec.europa.eu/yourvoice/consultations/index_en.htm

National Indicator 54 -...

Louise Franklin (louise@edcm.org.uk) — Mon, 21 Apr 2008 20:06:00 UT

National Indicator 54 - Developments

Dear Larry,

Many thanks for copying your email to us. It sounds like you are taking forward some effective lobbying in Sefton. I thought it might be helpful to clarify the current position on National Indicator 54 as there have been some developments. The Department for Children, Schools and Families have released a guidance note about the indicator (see http://www.everychildmatters.gov.uk/_files/AHDC_NI54%20update_March%2008.doc ) which states that the dataset needed to measure performance against National Indicator 54 will not be ready until autumn this year.

We have heard from several councils who are resisting including the indicator in their LAA until the dataset is ready. However, although this means it doesn't make sense for the council to include it as one of their 35 'priority' indicators in the LAA, it can be included as an additional local target when the LAA is refreshed in 2009, and the council will still have to report against it. So it makes sense to continue to lobby for a commitment that the council will include it when the dataset is ready. Please see attached template letter which can be sent via our online action at http://www.edcm.org.uk/la_charter. I hope this helps, but please feel free to come back if you need any further clarification.

Best wishes

Louise Franklin

Campaign and Policy Officer - Every Disabled Child Matters

Council for Disabled Children - National Children's Bureau

8 Wakley Street

London EC1V 7QE

Direct Line: 020 7843 6108

Dear ColleagueI am writing to

Jenny Poulter (Alex.Welsh@eppcic.co.uk) — Tue, 22 Apr 2008 09:25:00 UT

Dear Colleague

I am writing to ask for your help in putting together an exciting new training programme for carers, funded by the Department of Health (DH). We are conducting research to help us build up an accurate picture of training currently available to carers. Your response to our questionnaire will help shape the development of the new programme and allow you to express an interest in becoming a grant-funded provider of the new training. In January 2008, the DH awarded a contract to develop an expert carers programme (ecp) to a consortium of five organisations, led by the Expert Patients Programme CIC. The ecp aims to ensure that all carers over the age of 18 can access good quality training to enable them to safeguard their own health and well-being and that of the person they care for.

One of the underlying principles of the programme is that the ecp will not replace the training currently available to carers but will build on current provision. The purpose of the questionnaire is to find out what is currently being provided. The results will widen the knowledge gained from research commissioned on behalf of the DH in 2006. To ensure that the questionnaire reaches as many providers and commissioners of training for carers as

possible, we are contacting many organisations known to us or our Partners in the ecp consortium (Carers UK, Crossroads, Partners UK and the Princess Royal Trust for Carers).

• Please complete the questionnaire by clicking on this message or use the link below

https://www.surveymonkey.com/s.aspx?sm=IrLlFj4_2b0HgJifD_2fxpopUQ_3d_3d

and, if you think we may have missed someone, please forward this email to them.

• If you are not the best person in your organisation to answer the questions, please forward this message to whoever is best placed to complete it.

• We would like a response even if you don’t provide or commission training as this will help us complete the picture – the questionnaire clearly outlines the information we would like from those not involved in training.

As the questionnaire is aimed at providers and commissioners of training it is possible that we may receive the same information from different sources. We are confident, however, that we will pick this up so please do ensure that your organisation responds. Many thanks for taking a few minutes to complete the questionnaire. It will not only help shape the direction of training for carers in the years ahead but will also ensure that your organisation, or you as an

individual trainer, have the opportunity to be considered as a potential ecp training provider.

With thanks.

Jenny Poulter - ECP Project Manager

Open letter to Colin Oxley -...

PAT Management Committee (gardinerl@hotmail.co.uk) — Wed, 23 Apr 2008 21:45:00 UT

Open letter to Colin Oxley - PAT BBC Action Network Campaign

Hi Colin,

Our recent BBC Action Network campaign has now achieved all it's initial objectives and this will close soon. We have publicly acknowledged and thanked all contributors, supporters, helpers and allies who made this possible and your name features very prominently on a rather long list.

You can go to http://www.bbc.co.uk/dna/actionnetwork/G2606 to read our 'last post' but we'd like to thank you personally too.

The EDCM Charter and NI 54 will make a big difference to lots of children's lives. Parents now have a real opportunity to advocate successfully, to exercise scrutiny, to hold service providers to account and to participate in decison making. Arrangements may be imperfect and an inevitible mismatch between expectations and realism will undoubtedly arise BUT at least the structures and processes will now exist to help manage this and to enable meaningful engagement.

We have a good story to tell in Sefton and the opportunity to demonstrate leadership, vision and best practice. Your part in all this is appreciated.

Best wishes,

Larry Gardiner

Secretary - Parent Advocates Together

http://www.parentadvocatestogether.org.uk/

4 Lime Grove

Seaforth

Crosby

Merseyside

L21 3TT

Call for help with our human...

Trevor Phillips (HRI@equalityhumanrights.com) — Thu, 24 Apr 2008 18:28:00 UT

Call for help with our human rights inquiry

Following the launch of our inquiry into the state of human rights in Britain today, we are now calling for evidence from public authorities, such as hospitals, government and schools, and those who use their services to find out if people are being treated with dignity and respect. The Commission wants to draw up an accurate picture of how the Human Rights Act is working and what improvements can be made and is asking people to fill in a short questionnaire to tell the inquiry about their experiences, both good and bad. The Commission wants to know from anyone who has used human rights arguments to challenge the way they were treated by a public service. It would also like to hear from service providers who treat people fairly by adopting a human right based approach.

The questionnaire is part of a wider inquiry, which aims to examine how the current human rights framework might be developed and used to realise the vision of a society built on fairness and respect and confident in all aspects of it diversity. Its scope emerged out of a consultation with more than 200 organisations, including unions and advocacy groups. Chair of the Commission, Trevor Phillips said:

"Human rights legislation has been used to help individuals, such as the elderly and disabled people, who are faced with indignity at the hands of the state. It should help those who are at risk from the heavy-handed application of authority. But the Commission wants to build an active human rights culture and if we are successful, human rights principles, as basic principles of decency and dignity, will be embedded into public authorities' approach to service delivery. The findings from this inquiry will help us demonstrate how human rights can change society for the better, for us collectively, and for us individually."

For more information about the Inquiry and to download a call for evidence response form, please follow this link.

http://www.equalityhumanrights.com/en/projects/humanrightsinquiry/Pages/Huma nrightsInquiry.aspx. Alternatively try: http://tinyurl.com/5qypxn.

The evidence will be vital in helping to make this inquiry as comprehensive as possible. Forms should be sent by 21st June 2008. Please contact the Commission's helpline for evidence forms in alternative formats such as Braille, easy read, audio CD. Responses should be sent to:

FREEPOST, RRUY-EJHS-CKGT,

Equality and Human Rights Commission - Human Rights Inquiry,

3 More London, Riverside,

Tooley Street,

London SE1 2RG

Voice - 0845 604 6610

Textphone - 0845 604 6620

Giving more people a say in...

Warwick University (nhscentreforinvolvement@warwick.ac.uk) — Sat, 26 Apr 2008 02:40:00 UT

Giving more people a say in local spending – Participatory Budgeting: A Draft National Strategy

A draft national strategy on participatory budgeting has been launched by the department of Communities and Local Governement for consultation. The consultation closes in June 2008.

The purpose of the consultation is to seek views on the draft Participatory Budgeting Strategy. Specifically, the document seeks views on the strategy as a plan to achieve the Government's ambition for participatory budgeting to be used in all local authority areas by 2012.

Click on this message to download the consultation document.

DCSF: Scoping Study for...

Meera Prabhakar (mprabhakar@sqw.co.uk) — Sat, 26 Apr 2008 18:49:00 UT

DCSF: Scoping Study for Individual Budgets for Families with Disabled Children

As part of the Aiming High for Disabled Children (AHDC), the Department for Children, Schools and Families (DCSF) has commissioned a scoping study prior to the piloting of Individual Budgets (IB) for families with disabled children.

Improving Life Chances for Disabled People (Prime Ministers Strategy Unit, Jan 2005) recommended that the IB approach should, in principle be extended to families with disabled children. AHDC seeks to deliver on that recommendation by undertaking pilots during the next three years.

If you are involved or interested in this area of work and would like to participate in the scoping study please contact me at carol.lynagh@dcsf.gsi.gov.uk or Meera Prabhakar (SQWC Project Manager) at mprabhakar@sqw.co.uk or on 020 73077151. Further Information on the scoping study will be available soon at http://www.everychildmatters.gov.uk/socialcare/disabledchildren/