On behalf of Newlife Foundation for Disabled Children, as well as the children and families we represent, I have pleasure in enclosing here our organisation’s response to the Green Paper.

Newlife Foundation for Disabled Children (formerly known as Birth Defects Foundation/BDF Newlife) is a charity which helps children with disabilities and life-limiting conditions and their families across the UK by providing equipment to help individual children, by providing nurse led support services, by funding pioneering medical research and by raising awareness and campaigning. We do not intend to respond in detail to every one of the consultation questions but our comments listed below relate to children with specific and identifiable disability, rather than SEN in general, and their carers.

Question 1: How can we strengthen the identification of SEN and impairments in the early years, and support for children with them?

In our view, the critical factor for parents/carers is access to early, accurate, easily-accessible information. While the possibility of early diagnosis is variable, the experience of families we are in contact with is that even when conditions are diagnosed at birth, families are left in limbo without any clear indications of what is likely to happen next, or over the years to come. Every disabled child is, of course, unique but for many conditions the prognosis will be similar in every case. In the same way, the child’s needs will be similar as will be the pathways to address them. Rather than families having to navigate systems alone, a route map to negotiate service pathways would be helpful.

The proposed Common Assessment Framework is, in our view, essential. Moreover, the goal of a key worker for every disabled child is yet to be realized and we trust that this aspiration will be reinforced. We do not see why a child with significant disabilities should not have at least the draft of a personal plan in place within days of birth.

Question 2: Do you agree with our proposal to replace the statement of SEN and learning difficulty assessment for children and young people with a single statutory assessment process and an ‘Education, Health and Care Plan’, bringing together all services across education, health and social care?

For too long, there has been a tendency for responsibility for the provision of services – and associated costs – to be shunted from one public service organisation to another in spite of eg JSNAs, Local Strategic Partnerships etc. This has led parents to be passed across organisations, each requiring the same information, and to their increasing frustration. We therefore welcome the proposal for a single assessment that will apply across health, education and care services, but we are concerned to ensure that the role of parents in assessments is not diluted in any way.

However, there needs to be a clear and mandatory indication of which organisation takes on the lead responsibility for the Education, Health & Care Plan and delivery of its provisions. Not only this, but there also needs to be a clear, unequivocal and binding commitment from all partners to it, including budgetary provision. We also believe that a robust and transparent appeals process is essential if the proposed changes are to receive the widest consensus.

There should also be a joint and mandatory commitment to regular review of the plan and its delivery by all partners. If it is the case, for example, that a charity or other third sector organisation has been involved in supporting the child, that organisation should also be given a voice in reviewing the plan and its delivery.

Question 3: How could the new single assessment process and ‘Education, Health and Care Plan’ better support children’s needs, be a better process for families and represent a more cost-effective approach for services?

It will self-evidently reduce duplication and the frustration caused by the constant reiteration by parents of their child’s history and should therefore bring some cost benefits. However, we are concerned that the Green Paper’s reference to “a straightforward plan that reflects the family’s ambition for their child” fails to take account of the fact that a child with complex disabilities may need complex solutions. We are also concerned that families often, for the most understandable reasons, focus more on what their child is unable to do rather than able to do and so the family’s ambitions for their child may well be limited. We would therefore welcome the involvement of an independent advocate in the setting up and reviews of the child’s plan.

Question 4: What processes or assessments should be incorporated within the proposed single assessment process and ‘Education, Health and Care Plan’?

We believe, as stated above, that independent advocacy on behalf of the child would bring significant benefits.

We strongly believe that the timely provision of appropriate specialist equipment is invaluable for a child’s health and wellbeing, as well as that of their carers. An Audit Commission Report on Community Equipment Services in 2000, Fully Equipped, recognised not only the benefits for the recipient but also its cost-effectiveness:

“If a medicine was discovered with a similar cost-profile, it would be hailed as the wonder drug of the age”

Yet, too often, disabled children and their families struggle to get the equipment they need. As a charity, in 2009/10 we provided grants of over £1.165 million last year to 818 children and families in the UK and we are also now launching our “Just Can’t Wait” service for terminally-ill children to fast-track equipment provision. Organisations such as ours are regularly filling in the gaps between statutory services in providing what we believe is essential, as opposed to desirable, equipment. We therefore urge Government now to take this opportunity to put this right.

On a related specific legal issue, details within the Road Traffic Act (1988) are at present preventing disabled children with the most complex needs from accessing the highest specification wheelchairs because, within the terms of the current legislation, they are too young (under 14 years) or the wheelchair is too heavy (over 150kg).

ROTA 1988 was written wheelchairs were an aid to mobility. Today, wheelchairs provide disabled children with an aid to life. Children with the most disabling conditions rely on their wheelchair to meet their therapy and personal care needs, prevent a deterioration in their condition or experiencing of pain, access education and family life and, for some children, lengthen their life span. We therefore believe that ROTA 1988 discriminates against the children who have the greatest need for this equipment and are pressing for the minor but necessary amendments to allow disabled children to benefit from the latest technology.

We feel that the provision of equipment should certainly be considered in terms of the widest context of a child’s life and not simply a health matter or education or social care. For example, we are concerned that, too often, a child who is provided with a piece of equipment for use in school is not allowed to use it in other settings because it was bought, and therefore owned, by the school, itself rather than the child. This is clearly as unfair as it is wasteful. It would be helpful therefore for a clear and unequivocal statement on a child’s statutory right to appropriate equipment, and its provenance, to be included in the detailed plans to be produced by Government.

Question 5: What is the potential impact of expanding the scope of the proposed single assessment process and plan beyond education, health, social care and employment?

We do not want to see the complexities of the current system replicated in an overly-complex system in the future. There may be scope at some point for the expansion of the single assessment process but we would urge caution initially: we need to ensure that the basics are right first.

Question 6: What role should the voluntary and community sector play in the statutory assessment of children and young people with SEN or who are disabled? How could this help to give parents greater confidence in the statutory assessment process?

The involvement of the voluntary and community sector would bring independence to the process and we believe greater confidence and trust.

However, we firmly believe that the sector should not be used to replace or replicate statutory services. We also look forward to a time when we do not have to provide what we believe to be essential support but those extras which provide enhancements to the quality of a disabled child’s life.

Question 7: How could the proposed single assessment process and ‘Education, Health and Care Plan’ improve continuity of social care support for disabled children?

In a truly personalised system, with the provision of appropriate Personal Budgets, Direct Payments etc, this would not be an issue. However, we would urge some caution: while a single process might appear attractive initially, there must be clarity of understanding of a child’s separate health, care and educational needs.

In connection with this, we would also emphasise that, in the context of the current review of DLA, the particular and specific needs of children with disabilities and life-limiting conditions should be focused upon. We are particularly concerned at present that children under the age of 3 are not eligible for the mobility component of DLA. In 2001, DLAm criteria were changed to lower the minimum age from 5 years to 3 but this still excludes a large number of children. In fact, although very young children with severe mobility problems are entitled to DLAm from the age of three, others with less inhibiting conditions may have to wait until they are five as only the higher rate can be paid from the age of three years, the lower rate only from the age of five years. It is therefore accepted that children from 3 months may have additional ‘care’ needs but they are assumed not to have additional mobility needs as well, which is clearly not the case because of the significant additional costs that families face:

• Disabled children under three have considerable amounts of equipment that can severely impact on that child’s ability to be mobile (ie moving a car seat, wheelchair, feeding pump, seating system, standing frame, tubes, suctioning, oxygen etc from one location to another is a difficult task)
• Children with severe disabilities often require more transport (attending hospital appointments, S&LT, special schools and nurseries, OT, Physio, Dieticians, Sure Start centres / development centres, respite care and hospices) and go further distances than children without disabilities.
• Many babies with the most complex mobility needs are life limited and often do not live long enough to benefit from DLAm.
• Children who are use specialist buggies, oxygen tanks, suction machines, arm supports, splinting and braces etc often cannot access public transport and so parents without independent transport have to pay premiums for specially adapted taxis.
• With advances in technology, many children under three years use powered wheelchairs now and require a wheelchair accessible vehicle (WAV) but their families are unable to access the Motability Scheme because they do not qualify for DLAm.
• Other additional mobility costs for disabled children are:
  • More petrol required to attend hospital appointments / out of county school / therapy etc.
  • Specialist car seats costing 10 times that of its standard counterpart
  • Hospital parking charges
  • Congestion charges
  • Paying for special adaptations to transport the child
  • Families having to use 2 vehicles for family transport

Moreover, while a child can receive DLAc under 3 months if they are eligible under ‘special rules’ (ie terminally ill and not reasonably expected to live longer than 6 months). There are no ‘special rules’ for terminally ill children in respect of the mobility component.

Question 8: How could the arrangements for provision of health advice for existing statutory SEN assessments be improved?

With the emphasis on partnership working in new assessments, we would hope to see (i) a focus on the Common Assessment Framework with health professionals attached to schools, (ii) a process which is e led” so that all partners have to meet mandatory deadlines rather than the “in principle” agreements in place at present and (iii) a simplification and rationalization of the paperwork which is far too complex at present. Some of the documents that families are asked to complete, they are unable to understand and require additional (and objective) support with this. Easy-read formats should be available. There should also be an open, comprehensive and shared timeline for the completion of assessments and professional input.

Question 9: How can we make the current SEN statutory assessment process faster and less burdensome for parents?

We would welcome any moves to reduce duplication and avoid the family having to tell their story time and time again. We would also like to see simultaneous delivery proposals in a child’s plan brought into line with the agreement and publication of the plan itself.

Question 10: What should be the key components of a locally published offer of available support for parents?

From our perspective, we would like to see the offer include explicitly and unequivocally the timely access to appropriate specialist equipment, including what we believe to be essential items such as specialist car seats.

Question 11: What information should schools be required to provide to parents on SEN?

Any information should be coordinated across, and owned by, all services and not just a single arm.

Question 12: What do you think an optional personal budget for families should cover?

Most of our families are utterly realistic and practical in their expectations. They would not expect a personal budget to cover all health, education and care needs of their disabled child. On their behalf, however, we would expect all basic and or essential provision (ie any equipment or services which can enable a child to be integrated into their local community, family and education setting) to be covered. To this end, a nationally-agreed menu could be developed to ensure equity across the country. As far as personal budgets are concerned, however, we strongly believe that they should be appropriately modeled to take account of worsening/changing conditions.

We would also refer you to our comments on the mobility needs of children under 3 in our response to Question 7.

Question 13: In what ways do you think the option of a personal budget for services identified in the proposed ‘Education, Health and Care Plan’ will support parents to get a package of support for their child that meets their needs?

This may well bring wider choice but must not mean an abdication of responsibility by public services to the family. There is, however, a clear role here for third sector organisations in advocacy, in the planning and in the delivery of support services.

It must also be recognised that many families will be unable to access or manage personal budgets. This must not be allowed to become additional unmet need.

Question 14: Do you feel that the statutory guidance on inclusion and school choice, Inclusive Schooling, allows appropriately for parental preferences for either a mainstream or special school?

The present reality is that is no choice. If a school says that they can not support a disabled child, there is no choice for that child but to attend a special school. We believe that there needs to be a greater obligation on mainstream schools to respond to the needs of disabled children. It is of course imperative and that funds should be made available to support this move to increasing choice.

Question 15: How can we improve information about school choice for parents of children with a statement of SEN, or new ‘Education, Health and Care Plan’?

See above.

Question 16: Should mediation always be attempted before parents register an appeal to the First-tier Tribunal (SEN and Disability)?

We believe that this should be advisory rather than mandatory, as the latter may lead to additional and avoidable delay. We also believe that there should be a single and transparent complaints route and that legal aid, or an equivalent, should be afforded to families in need of this financial support.

Many families need support to access mediation, and must be reassured that services are not stalling on what may be offered. Any third party involvement should be impartial and look at all sides of the case.

Question 17: Do you like the idea of mediation across education, health and social care? How might it work best?

In order to ensure that mediation works for the benefit of disabled children and their families, it needs to be recognised that they must be supported in making their case as fully as possible. It must also be recognised that delays in such processes should be avoided.

As stated above, we believe that there should be a single complaints route in relation to a child’s Plan.

Question 18: How can we ensure that the expertise of special schools, and mainstream schools with excellent SEN practice, is harnessed and spread through Teaching Schools partnerships?

There needs to be a continual enforcement of good practice through training and wider dissemination. Practice should be monitored and managed per se and there needs to be a separate recognition that attainable goals for any child are unique and individual.

Question 19: How can we ensure that we improve SEN expertise, build capacity and share knowledge between independent specialist colleges, special schools and colleges?

As above.

Question 20: How can we continue to build capacity and SEN specialist skills at each tier of school management?

In reality, SEN is too often the “poor relation” in education. We believe that it should be mandatory for all management posts to have knowledge of and experience in this area.

Question 21: What is the best way to identify and develop the potential of teachers and staff to best support disabled children or children with a wide range of SEN?

We believe that SEN training should be mandatory for all potential teachers.

Question 22: What is the potential impact of replacing School Action and School Action plus and their equivalents in the early years with a single category of SEN in early years settings and schools?

We are concerned that this may (i) take away a sense of the child’s individuality, (ii) limit choice for families, (iii) create yet another hurdle for families and (iv) remove the possibility of differentiation between categories.

Question 23: How could changing the school- and early years setting-based category of SEN embed a different approach to identifying SEN and addressing children’s needs?

No comment.

Question 24: How helpful is the current category of BESD in identifying the underlying needs of children with emotional and social difficulties?

Any one category or description fails to capture the whole range of individual issues and needs; BESD is one of many such categories. In particular, we have concerns that children with particular conditions, either diagnosed or undiagnosed, which lead to behavioural problems may be stigmatised as “difficult” when there is a biological rather than social reason behind the problems being experienced. This potential pitfall should be recognised and avoided through the CAF.

Question 25: Is the BESD label overused in terms of describing behaviour problems rather than leading to an assessment of underlying difficulties?

The anecdotal must not be confused with evidence-based assessments. This does a disservice to all children who are labelled in this way.

Question 26: How could we best ensure that the expertise of special schools in providing behaviour support is harnessed and shared?

These may provide opportunities, at a local level, to provide a hub for advice and information, at least, on all associated issues.

Question 27: What are the barriers to special schools and special Academies entering the market for alternative provision?

We suspect that a range of potential barriers exist, from capacity and funding to parental expectation and believe that the whole issue should be researched further.

Question 28: What are the ways in which special Academies can work in partnership with other mainstream and special schools and Academies, and other services, in order to improve the quality of provision for pupils with SEN and disabilities?

See 26.

Question 29: What are the barriers to special Academies becoming centres of excellence and specialist expertise that serve a wider, regional community and how can these be overcome?

See 27.

Question 30: What might the impact be of opening up the system to provide places for non-statemented children with SEN in special Free Schools?

No comment.

Question 31: Do you agree with our proposed approach for demonstrating the progress of low attaining pupils in performance tables?

We would question whether performance tables are needed unless they lead directly to an improvement in service provision.

Question 32: What information would help parents, governors and others, including Ofsted, assess how effectively schools support disabled children and children with SEN?

No comment.

Question 33: What more can education and training providers do to ensure that disabled young people and young people with SEN are able to participate in education or training post-16?

It would be helpful for education and training providers to engage more directly and regularly with potential employers, such as ourselves. As has been said, our Opportunity Centre was set up specifically to support people who are disabled to engage in voluntary work per se and/or to use this experience as a stepping-stone towards paid employment.

Question 34: When disabled young people and young people with SEN choose to move directly from school or college into the world of work, how can we make sure this is well planned and who is best placed to support them?

In our experience, individual and informal mentors within the work place give invaluable support, over and above any more formal arrangements. The third sector, via organisations such as the Shaw Trust, provides invaluable expertise in this.

Question 35: Do you agree that supported internships would provide young people for whom an apprenticeship may not be a realistic aim with meaningful work opportunities? How might they work best?

Yes, we agree. Here at the Newlife organisation we provide volunteering and employment opportunities to people with disabilities and give support both via the physical environment (eg the provision of lifts) and through the management of our Opportunity Centre.

Newlife Opportunity Centre in our HQ in Cannock, Staffordshire, offers all individuals (able bodied and disabled), organisations and groups the chance to work as volunteers on recycled products and raise funds for the charity offering their skills and time. Committed to social inclusion, we offer flexibility, with no long term or regular commitment required, and places for training are also available.

Question 36: How can employers be encouraged to offer constructive work experience and job opportunities to disabled young people and young people with SEN?

We believe that it is right to focus on what an individual can do rather than what they can’t do. Sadly, one of the unfortunate consequences of any disability assessment must necessarily focus on the latter but this should not dictate their whole life and become the sole focus.

Question 37: How do you think joint working across children’s and adult health services for young people aged 16 to 25 could be improved?

The partnership needs to be embedded in the culture of each service organisation with genuinely pooled budgets, joint ownership of service and accountability for its delivery and a joint commitment via Joint Strategic Needs Assessment for service planning/commissioning.

Question 38: As the family doctor, how could the GP play a greater role in managing a smooth transition for a disabled young person from children’s to adult health services?

If there is no nominated key worker, it is often an allied professional such as a physiotherapist who is most closely associated with a child with disabilities. The involvement of such a professional is crucial in transition, as in all stages.

Question 39: Do you agree that our work supporting disabled young people and young people with SEN to prepare for adulthood should focus on these areas: ensuring a broad range of learning opportunities; moving into employment; independent living; and transition to adult health services?

What else should we consider?

Yes – but the costs of support in the workplace need to be considered carefully (e.g. the installation of lifts). If the costs fall wholly on the potential employer, fewer opportunities are likely to be made available.

Question 40: We have identified three core features of the role of local authorities in supporting children and young people with SEN or who are disabled and their families: strategic planning for services, securing a range of high quality provision, and enabling families to make informed choices

and exercise greater control over services. Do you agree that these are the three core features of the role of local authorities in supporting children and young people with SEN or who are disabled and their families, or are there others?

Yes, these 3 features are central but the arrangements for funding must also be clearly and explicitly prescribed along with the “menu” we have referred to above.

Question 41: How can central government enable and support local authorities to carry out their role effectively?

In two main areas, we believe that central government should (i) ring-fence­ funds allocated to local authorities for services for disabled children and their families (eg the Early Intervention Grant) and (ii) measure levels of unmet need.

Question 42: What would be the best way to provide advice to GP consortia to support their commissioning of services for children and young people with SEN or who are disabled and their families?

We feel that the National Commissioning Board must set out clear guidelines for the provision of the sort of specialist services required by children with disabilities. We also believe that disabled children and their families must be invited and enabled to be directly involved in local Healthwatch groups and specifically be part of the deliberations of Health and Wellbeing Boards. The pressures of coping with a child with disabilities or a terminal condition can be overwhelming so steps must be taken to ensure that even these quietest of voices are heard.

Question 43: What would be the most appropriate indicators to include in the NHS and public health outcomes frameworks in the future to allow us to measure outcomes for children and young people with SEN or who are disabled?

As yet, there is too much about this subject which is unknown: how many children are disabled? What is the level of unmet need? Where should funding for enabling young people leaving school to move forward with their choices be allocated? How should a move to FE, into work, off benefits be facilitated? At present, far too much time is spent by all stakeholders in trying to gather together pots of funding from a wide variety of sources, making the systems opaque and extremely difficult to negotiate.

Question 44: What are the ways in which the bureaucratic burdens on frontline professionals, schools and services can be reduced?

Clarity around the funding of much-needed services would take a great deal of pressure off frontline professionals. A professional recently wrote to me of the sorts of “burdens” that people in these services face every day spending precious time searching for funds:

“I am writing as the provision of postural equipment in our district has become extremely fragmented and services are being withdrawn. Therapists and families are becoming increasingly anxious as a need is identified for a child but there is nowhere to send the referral. We would be very grateful if you could …. give us some pointers on how we can support the families to get access to the equipment their children need.”

It is unfair to characterise administrative or “back office” staff as expendable but without support staff in these roles, frontline professionals are diverted from where their expertise is best used.

Question 45: In addition to community nursing, what are the other areas where greater collaboration between frontline professionals could have the greatest positive impact on children and young people with SEN or who are disabled and their families?

The list should include Occupational therapy, Speech and Language Therapy, Physiotherapy, Dieticians, Continence Nurses and Portage Teams, amongst others.

The whole area of equipment provision would benefit from better and more open collaboration.

Question 46: What more do you think could be done to encourage and facilitate local services working together to improve support for children with SEN or who are disabled?

We believe that there is a great deal of good will between frontline workers in the whole range of SEN services and a commitment to partnership working where this serves the best interests of the child. However, concerns about funding too often get in the way.

Question 47: How do you think SEN support services might be funded so that schools, Academies, Free Schools and other education providers have access to high quality SEN support services?

No comment.

Question 48: What are the innovative ways in which new models of employee-led organisations, such as mutuals and cooperatives, could improve services for children and young people with SEN and their families?

We would like to see the experience and expertise of adults with disabilities engaged directly in mutuals, user-led organisations etc for children with disabilities. They, after all, are experts.

Question 49: In addition to their role in the assessment process, what are the innovative ways in which educational psychologists are deployed locally to support children and young people with SEN or who are disabled and their families?

We are aware of the delays in the system currently, including getting appointments, because of shortages of specialists in this field.

Question 50: How do you envisage the role and service structures of educational psychologists evolving to meet local demands?

No comment.

Question 51: What are the implications of changes to the role and deployment of educational psychologists for how their training is designed and managed?

We would not want this to have an adverse effect on waits for appointments and would welcome assurances that this will receive attention.

Question 52: What do you think can be done to facilitate and encourage greater collaboration between local authorities?

With the proposed end of Strategic Health Authorities and Regional Development Agencies, the current cross-regional networks are in danger of being lost or diluted. We hope that Government will take steps to prevent this.

Question 53: What do you think are the areas where collaboration could have the greatest positive impact on services for children, young people and families?

The key worker is essential to effective and productive collaboration.

Question 54: How do you think that more effective pooling and alignment of funding for health, social care and education services can be encouraged?

We believe that this has in the past been the stumbling block far too often. It may therefore need statutory weight.

Question 55: What are the ways in which a Community Budget approach might help to improve the ways in which services for children and young people with SEN or who are disabled and their families are delivered?

This would certainly put the clients right at the centre of services. Please see our comments under Question 48.

Question 56: What are the ways in which we could introduce greater local freedom and flexibility into the ways in which funding for services for children and young people with SEN or who are disabled is used?

There needs to be a recognition and awareness that “local freedom and flexibility” can also be caricatured as a “postcode lottery”.

Question 57: What are the areas where the voluntary and community sector could have the greatest positive impact on services for children and young people with SEN or who are disabled and their families, and what are the ways we can facilitate this?

We believe that Newlife Foundation has an extremely positive impact on the lives of disabled children and their families via two of the core services we offer: (i) an equipment grant service, across the whole of the UK and funding the whole range of specialist equipment and (ii) our nurse services, specifically our hipline service offering advice and support on the whole range of issues and questions which may arise. Our third core service is the funding of medical research. While this does not have the same immediate impact, we believe it is essential in answering the “why me?” questions.

We remain concerned that those families most in need will still not be reached, that funding streams will not be as transparent as they should be and that a “postcode lottery” may continue.

Question 58: How do you think a national banded funding framework for children and young people with SEN or who are disabled could improve the transparency of funding decisions to parents while continuing to allow for local flexibility?

We would welcome more detail on this possibility.

Question 59: How can the different funding arrangements for specialist provision for young people pre-16 and post-16 be aligned more effectively to provide a more consistent approach to support for children and young people with SEN or who are disabled from birth to 25?

It has to be recognised that services to adults, whether disabled or not, are very different from and services to children. This is an essential difference with adulthood. However, needs do not go away and we would hope that, at the beginning of the 21^st century and in spite of difficult economic circumstances, people with disabilities can be properly supported to create for them as far as possible a level playing field.

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