Southwark Parent Carers Council
speaking up for families with disabled children

News News

1 Jun SEND: Inspire to Aspire

A Southwark PCC event for parent carers on EHC Plans, Outcomes & Aspirations and SEN support

More than 60 people - parents, professionals and other representatives from various support agencies - attended our successful Inspire to Aspire event to find out more about Education, Health & Care Plans (EHCPs), Outcomes and Aspirations and SEN support.

Held at Inspire at St Peter’s Church in March, the event kicked off with a presentation delivered by Fazilla Amide, a parent carer from Enfield’s parent carer forum. Fazilla explained the concept of outcomes and aspirations in EHCPs, eg. An aspiration would be a long-term goal, such as “I want to go to college” but an “Outcome” is a measurable achievement, such as “by the end of the year, I can write my name.”

Outcomes should always be framed positively and focus on potential achievements and be SMART – specific, measurable, achievable but ambitious, realistic, and with a time-scale. Then provision should be put in place to achieve those outcomes.

Fazile also talked about the importance of person centred planning – listening to and involving children and young people in thinking about and planning their lives - and demonstrated to parents how they can play a vital part in shaping their child’s future through the EHCPs.

Loads of questions were raised as parents and professionals are still getting to grips with the new system of EHCPs, with parent carer comments such as:

‘I still need to clarify the difference between moderate and severe needs that prompt the EHC plan to be drawn up.’

‘Parents need more face-to-face support when filling in the new EHCP.’

‘My daughter’s primary school has been exceptionally helpful and on target with all the information I heard today.’

‘The EHC plan needs to acknowledge parent carer assessments and all their children’s needs, too.’

Some of the presentations and materials from the event are available to download below:

Training Person Centred Planning HO1 (4).docx

Training London Region 1 26 November Definitions HO2.docx

18 May Southwark PCC News bulletin: May

Carers & the Care Act 2014
Carers Must Be A Priority For The New Government
Carers UK Chief Executive Heléna Herklots responds to the General Election 2015.Carers UK 6.5 million people in the UK are caring for older, sick or disabled loved ones with “carers are now looking to the new Government to improve support for carers as an urgent priority. Without carers our society would collapse - their unpaid care saves the state £119bn per year and enables loved ones to get the most out of life. Yet, many feel undervalued, unsupported and face a daily struggle to cope”.
CarerSmart: Did you know there are offers, benefits and discounts available exclusively for carers and people with care needs?
CarerSmart is a new club from Carers Trust and is open to carers, people with care needs and staff and volunteers across the Carers Trust network.

Easyjet To Fit Planes With Wheelchair Accessible Toilet
All new Airbus A320 delivered after May 2016 will be featuring the wheelchair accessible lavatory. Airbus is the only aircraft manufacturer in the world to offer this inclusive option on single aisle planes.
Read more here

Rough Guide to Accessible Britain
This guide is packed with over 200 inspiring ideas for fantastic worry-free days out with reviews, hints and tips on some of the UK’s best attractions written by and for disabled people.
To make planning your days out easier, entries are grouped into 10 regional chapters with everything from museums, parks and studio tours, to scenic drives and coastal towns.
Every review contains all the access information you need to enjoy your day including disabled parking, wheelchair access and more.
Rough Guide to Accessible Britain

New resources about childcare for parents/carers of disabled children
The Family and Childcare Trust has launched new, free resources for parents and providers/practitioners to help families with children who have special educational needs and disabilities (SEND) to access childcare.
Read more here


20 Jan New resource to fight cuts in short breaks

Every Disabled Child Matters (EDCM) has put together a legal resource for parent carers of disabled children with input from Alex Rook, partner at Irwin Mitchell solicitors, and Steve Broach, Barrister at Monckton Chambers. This resource will help parents challenge cuts to short break services in their area.

EDCM says: "Short breaks are a fundamental support service to families with disabled children, helping them to lead ordinary lives. However, after successive years of cuts to local authority budgets the 2015/16 financial year is likely to see significant cuts to children's services generally and short break services for disabled children in particular."
The resource is designed to:

1.   Promote awareness of the 'short breaks duty' and what short break provision families with disabled children should expect to be available in their area
2.   Explain the legal framework around the provision of short break services highlighting opportunities for families with disabled children to challenge cuts to these services
3.   Provide template letters to families with disabled children to help challenge decisions by local authorities that result in cuts to the provision of short break services
4.   Signpost families to sources of legal support
You can download the resource here.

or type in this web address:

3 Jan Our new Winter newsletter out now

Read the Southwark PCC's new Winter 2014 newsletter, in our Newsletter section. The new issue includes more updates on the changes to SEN, including Education, Health and Care Plans (EHCPs), the Local Offer and personalisation.

Also included are event reports on 'outcomes' for children and young people, preparation for adulthood, plus find out how to get free support planning for personal budgets, access an independent supporter or get legal advice.

We also have a moving story of a sibling carer and a review of Spa School's café employment project.

If you would like to respond to the newsletter, or have any comments/opinions on how we could improve it, please let us know. We'd love to know if you've found it useful - please email us at:

Read the issue here. You can also pick it up at Sunshine House and other venues.

Or you can request for the newsletter to be sent to you by email and/or post. Just click on the Sign Up box on our newsletter page.

13 Nov Independent Supporter for families

An Independent Support Service to help families, in particular when their child/young person is transferring from a Statement of SEN to an Education, Health and Care (EHC) Plan is now being offered in Southwark. 

The service is being offered by Family Lives, a voluntary organisation. Independent Supporters will:

  • Provide advice and support for parents of children with SEN, and young people (16+) with SEN, through the statutory assessment and Education, Health and Care Plan (EHCP) processes.
  • Help parents and young people through the process of transferring their statement of SEN to an Educational, Health and Care Plan (EHCP).
  • Help parents of young children, who are new EHC referrals, and/or young people approaching school leaving age and would have had a Learning Disability Assessment under the old system.
  • Help young person to ensure their views are heard and understood.
  • Liaise across a range of local services with the parent or young person to help gather the information required for an EHC Plan.
  • Help to build resilience in families by offering a range of time-limited support such as liaison across different agencies and advice on personal budgets. The level and nature of that support will be tailored to the particular needs of individual families.
  • Signpost parents and young people to the local Information Advice and Support Service, when the issue is outside the remit of an Independent Supporter.


How can you get in touch with an independent supporter?

By telephone on: 020 3131 3150

By letter and email 

By pre-arranged meetings



13 Nov Free Support Planning for Parents

Do you have a son or daughter with a learning disability, or care for somebody who has? Are you confused about Personal Budgets and Support Plans? Cambridge House is now providing free one-to-one advice and workshops for parents and carers of children and adults with learning disabilities in this area.

 The one-day workshop gives participants an introduction to self-directed support and an opportunity to explore the process of support planning. They can help with gaining awareness on how to access support services using personal budgets and will equip you with person-centred planning tools used to create a support plan.

This free service is offered until March 2015 so please contact them as soon as possible to book a workshop. Contact: Marta De Frutos or Beatriz Dominguez at Cambridge House on 0207 358 7014 or email or Website:

More information below:


Awareness Day


Our one-day workshop aims to give participants an introduction to self-Directed support and an opportunity to explore the process of Support Planning.


1- Objectives

  • Provide participants with an overview of Self-directed Support, Personal Budgets and Support Planning process.
  • Understand what the eligible needs are.
  • Understand how the support planning process contributes to the development of a support plan.
  • Consider what makes a solid support plan
 by answering the seven essential criteria questions required to be present in a support plan.
  • Introduce the support planning graphic tools as techniques used to develop a support plan.
  • Consider innovative and creative ways that people can use to meet their needs.
  • Understand how a Personal Budget can be managed.
  • Show people different ways of developing support plans.


2- Who is it for?

Parents and carers supporting young adults and adults with learning disabilities who want to deepen their understanding of the process of support planning.


3- Learning Outcomes

  • Gain an understanding of the Self-Directed Support jargon
  • Increase knowledge about the seven essential criteria questions, which must be present in a support plan.
  • Gain awareness of the new ways to access support services using Personal Budgets. 

  • Experience using person centred thinking tools, which are use to create a support plan.
  • Gain an understanding of how Personal budget can be managed.


4- How much does this course cost?

The course is free for all parents and carers, supporting an individual with learning disabilities in Southwark.


5- Dates & Venue

22nd January 2015 from 10am to 1.00pm or 29th January 2015 from 10am to 1.00pm

Cambridge House, 1 Addington Square, London SE5 0HF


To book a place, please contact:

Beatriz Dominguez | T: 02073587014 | E:



14 Oct IPSEA launches new website and parent training

IPSEA has developed parent carer training on the SEND reforms and a brand new website to help families (and those who support them) understand and exercise their legal rights when it comes to the new SEND reforms.

Part 3 of the Children and Families Act 2014 (covering the SEN legal framework) was implemented on Monday 1 September 2014.
To read more about the training, click here:

New website:

IPSEA offers free and independent legally based information, advice and support to help get the right education for children and young people with all kinds of special educational needs (SEN) and disabilities.

The new site is packed full of new information and new briefings about the new law, including:

Reminders about the old law that applies during the transition
A new "Resource Finder"
A brand new resource answering 12 FAQS about the new law
A popular EHC plan checklist is in the section on EHC plans
The site is still being worked on and improved but will be an essentital tool for our familes.

You can also read their blog at:

25 Sep Legal Factsheets about SEND reforms

Useful legal fact sheets about all areas of the new SEND reforms, and the duties on local authorities, can now be read or downloaded for free. Irwin Mitchell has teamed up with deafblind charity Sense and Steve Broach, a barrister at Monckton Chambers, to design legal training for ‘Independent Supporters’ – a government-funded programme led by the Council for Disabled Children to provide support to families who have children with special educational needs and need additional advice on the reforms.

As part of this project, Irwin Mitchell and its partners have prepared a series of factsheets and template letters on Part 3 of the Children and Families Act 2014.

To read these factsheets and letter templates, go to:

11 Sep Scope launches online community for parent carers

Scope has launched a new online community where parents of disabled children can share their experiences and get guidance and practical tips from other parents and disabled people on everything from how to access support, to finding the best specialist disability equipment.

The charity hopes this new community will also bring together parents of disabled children and disabled people, to help the charity campaign on the issues that matter to them most.

The site will be managed by a team of volunteers and experts, including parents, who will be on-hand to offer guidance and support on specific issues.

Campaigner Heather Harvey has volunteered to be a champion for the site.  Her 13-year-old son Nicholas has severe autism and learning disabilities. 

Read more on the Scope website

1 Sep SEND Reforms start today

Monday 1 September saw the first day for the implementation of the SEND Reforms, under the new Children & Families Act 2014. Below is a letter to all parent carers and parent carer forums (like us, the Southwark Parent Carer Council) from the National Network of Parent Carer Forums (NNPCF) that gives our view of what to expect from the new reforms for our families. And for more info:

Children and Families Act 2014: A new beginning - 1st September 2014

For over 3 years, since the publication of the green paper “Support and aspiration: A new approach to special educational needs and disability” people and organisations across England have been discussing the need to improve the outcomes for Children and Young People with Special Educational Needs and Disabilities.

Today, after a long journey that green paper which is now the Children and Families Act 2014 comes in to force.
The discussions have been challenging at times and so has the hard work that has involved Local Authorities and others to design new systems and solutions to meet the needs and expectations of the Act. From today as the new systems comes into force we will all find out how effective those plans are.

If we look back at the green paper, the opening three paragraphs of the foreward say:
“This Green Paper is about all the children and young people in this country who are disabled, or identified as having a special educational need. It is about their aspirations and their hopes. Their desire to become, like every child and young person, independent and successful in their chosen future, and, to the greatest extent possible, the author of their own life story.

It is about their families – who have consistently called for better support for their children and themselves. Families of the most disabled children who are providing 24-hour care from birth, or the families of children struggling at school and who don’t know where to turn for help.

It is also about their teachers, their college lecturers, and the many skilled staff from the health and social care professions who do their best, day in and day out, to provide the right support and encourage the highest aspirations.”
Since the design of the legislation started, the debates of what and how things should be done have been robust. Not everything that has been discussed has made the cut and there will be some who will continue to argue that the new system is not all it should be.

But we have to recognise that what is now law needs to be implemented, it must be allowed to settle in and then we must review it fully to find the gaps. However; that must be for a later date and everyone must now work together to ensure that Local Authority’s meet their duties and Government properly monitors progress and enforces improvement where necessary.

NNPCF are proud to acknowledge the efforts put in by parent carers and their local Parent Carer Forums during the design and implementation of the Act. With stretched personal resources and with a wide spread of representation Parent Carer Forums have been at the heart of the discussions. From those who have been involved with pathfinder areas and those who have tirelessly engaged in their local areas our hats come off to them in recognition of the challenges overcome and the solutions found.

Parent Carer Forums work hard to be representative and provide a voice for those who are less able to do so, for many different reasons. NNPCF acknowledge that there is still work to be done in ensuring that parent carers from all communities and backgrounds have an equal opportunity to be heard and we are committed to extending the reach of local parent carer forums further.

As information about the reforms becomes more widespread across Local Authorities, as engagement and partnership opportunities arise as a result of the reforms and with the introduction of the Independent Supporter Programme, NNPCF hope and fully anticipate that more Parents will find their voice and want to share their knowledge and experiences in a balanced and knowledgeable way, ensuring that all children who are encompassed by the Act get the support and services they need.

The Act provides the opportunities for Children, Young People and their Families to be fully involved in the decision making process, ensuring from the outset their needs are properly met. In his speech at the national Parent Carer Participation Conference for forums last year Edward Timpson said:

"I’ve been struck by how many parents I’ve met who say they’ve had to fight to get their child’s needs recognised, fight to get different services to work together, fight to be involved in decision- making, fight to reduce delays, fight to find out what help is available. You don’t need me to tell you that this simply isn’t good enough."

He continued....."That’s why I share your determination to change this, so that the system is genuinely on your side. So that your children can have what we all want for our children – support to help them develop and thrive to be the very best they can possibly be."

Looking back at the opening three paragraphs of the Green Paper we have to now determine if they and the words from Edward Timpson have now been translated into reality. Children, Young People and their Families must now look forward to a new beginning which from today must deliver better outcomes and provide clear aspirations for children with Special Educational Needs or Disabilities.

The old methods of services working in isolation, not sharing information or not developing meaningful partnerships have to be put aside. Parent carers will expect openness in all aspects of working. Clear documentation, assessments and plans will help everyone understand what must be delivered for each individual child.

Information will be key to ensuring that those who need it have access to it and understand it. The Local offer must be properly developed to ensure that services are visible and open to challenge and improvement.
Where support is needed or disputes arise there must now be clear and visible methods to access the services implemented for those purposes.

Commissioning agencies must work together and create effective partnerships to ensure that the right provision in each Local Authority is delivered, not what they think is needed, but what the services users need.
All of this will take time to bed in and in the short term as those on the front line get used to the new arrangements there may be an element of confusion and misunderstanding.

NNPCF nationally and Parent Carer Forums locally fully expect to be involved in helping resolve issues as they arise by helping share good practice and clarifying challenges over time.

The previous 30 year old system has now been put to rest, there has been a challenging journey over the last three years to achieve a new system that will have so many expectations. Now we must look forward to supporting the new reforms and embrace change.

This IS a new beginning... The final paragraph from the foreward of the Green paper says:

"Every child who is disabled or identified as having a special educational need deserves our support, so that they, like every other child, can achieve their aspirations. We can only achieve that by working together."

NNPCF Steering Group 1st September 2014