Children and Families Bill

Memorandum submitted by Newlife Foundation for Disabled Children (CF 61)

About Newlife: Newlife Foundation for Disabled Children is a charity which supports disabled and terminally ill children and their families across the UK through providing equipment grants to help individual children, though nurse-led support services, grants for medical research and raising awareness and campaigning on the issues which affect them.


Introduction: In 2007, Newlife published its report, It’s Not Too Much To Ask, which highlighted the failures of statutory services to meet the needs of disabled children and their families, focussing on their need for specialist equipment to improve their condition, alleviate their pain, improve their and their carers’ wellbeing, prevent future deterioration of their condition and enable them to take maximise their educational and social opportunities. Since then, we have welcomed a number of Government initiatives aiming to improve services for disabled children and the experiences of their families – Aiming High for Disabled Children, Transforming Community Equipment & Wheelchair Services, CSED (Care Services Efficiency Delivery, grants of £50,000 to each Strategic Health Authority to bring forward proposals to improve equipment services, NHS At Home: Children’s Community Nursing Services and, most recently, the Any Qualified Provider proposals for paediatric wheelchair and/or equipment services (now on hold again).

Sadly, none have these initiatives have significantly changed the experience of disabled children and their families who still have to struggle to get the services and equipment that their disabled children need. They continue to wait far too long for assessments, let alone for the proposed services or provision. The current cuts to local authority budgets coupled with both the reorganisation of and financial pressures within the NHS exacerbate an already intractable problem. Families themselves are under huge emotional and financial pressures too and the impact of welfare reforms is likely to add to these pressures. We believe that there is a real opportunity as the Children & Families Bill passes through Parliament to ensure that disabled children’s equipment needs are met and would urge consideration of this important aspect of provision.

We therefore focus our comments on this central issue, the timely provision of appropriate specialist equipment to meet the educational, health, care and social needs of disabled children.


i) Funding: We welcomed the Green Paper, Support and Aspiration; A New Approach to Special Educational Needs and Disability , as an indication of intent to improve services for disabled children across the board. We particularly welcomed the focus on a more joined-up approach to service provision for disabled children. However , we expressed our concern in our response to the Green Paper that a commitment to adequate funding across partner organisations was vital in ensuring appropriate provision. We do not feel that this is made clear or explicit enough in the draft Bill and that this may require a completely new funding system . In our Green Paper submission, we specifically said:

"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 JSNA for service planning/commissioning"

We are concerned that the provisions of the Bill are not robust or explicit enough to ensure this. Specifically, there little clarity at present of how specialist equipment is to be commissioned or the associated funding steams.

ii) In this respect, w e are very concerned that cuts to local authority budgets and pressures on NHS finances will work against truly joined-up services as families will continue to be passed around a system where no one organisation is given the lead responsibility for assuring needs are met. Such cost-shunting causes great difficulty for families as they have to negotiate with numerous organisation s in order to meet their children’s needs, often without satisfactory resolution. This also brings duplication, added (costly) bureaucracy and frustration. It can not be allowed to continue . 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.

iii) Moreover, we are concerned that disabled children may find themselves unable to attend a mainstream school because of funding issues , particularly relating to specialist equipment provision . Governing bodies have an obligation to use resources efficiently but we feel that a focus on "the provision of efficient education for others" (Part 3, 33 2b), on the " reasonably practical" (Part 3, 35 3) and on "the efficient use of resources" (Part 3, 35 3c) may well lead – however inadvertently - to educational and social exclusion for disabled children and will limit choice . There needs therefore to be a clear legal framework and robust appeals process .

iv) The Education, Health & Care Plan : We have long expressed the view that disabled children wait far too long for assessments and that, when they are in place, they wait far too long for the provisions of the assessment and/or statement to be delivered . We were therefore delighted that the Government is proposing a single, comprehensive plan (EHCP). However, we are very concerned that children who are physically disabled but do not have educational difficulties are being excluded from such single plans. We believe this to be a very serious omission which will impact adversely on children with a wide rage of physical disabilities. We also believe that this runs contrary to the direction of travel set by the Children & Young People’s Health Outcomes Forum which has been endorsed by the Government. We would therefore ask for consideration to be given to widening the term "special educational needs" to include those who need " special provision " (including specialist equipment) in order to enable them to be given full access to the widest possible educational opportunities.

v) We also feel that the health and care needs of a disabled child – in particular, from our perspective and experience, the timely access to appropriate specialist equipment – are given inadequate prominence in the Bill compared to educational needs. We believe that there is an opportunity now to redress this balance in order to meet the holistic needs of the disabled child and maximise their future potential.

vi) We would also welcome a much clearer indication of how care and health assessments will be dovetailed into what appears primarily to be an education plan (Part 3, 21 (5) ) . We would oppose any compartmentalisation of a child’s needs which may lead to ad hoc or differential provision depending on whether a child is in school, at home or elsewhere.

vii) The Local Offer : We welcome the reiteration (in Part 3, 22) that

"A local authority in England must exercise its functions with a view to securing that it identifies all the children in its area who may have special educational needs …(and)…. is responsible for a child or young person if he or she is in the authority’s area."

We have serious reservations, however, about the possible exclusion from services of children who do not have specific educational difficulties but still need specialist provision for their education (see v, above ). Th e information within the proposed Local Offer provides a basic building block to ensuring appropriate service provision is in place but too often statutory services have failed to accurately calculate and plan for the real number of disabled children in their area , in spite of the requirement to hold a disabled children’s register, to produce a robust and accurate Joint Strategic Needs Assessment and Health & Wellbeing Strategy . We are concerned that too many disabled children are still unknown to statutory services resulting in high levels of unmet need and that this direct responsibility referred to above for a disabled child will be diluted if the focus is only on "someone who has or may have special educational needs" (23 1(a)) or "brought to the authority’s attention by any person" (23 1(b)) as such. We strongly believe therefore that the Local Offer should include information about provision for the whole range of disabilities .

viii) We welcome the commitment to better and more accessible information but are concerned that a local authority will only be obliged to provide information about what "it expects" to be available. This may lead to the unintended consequence of either a "race to the bottom" with minimal provision being explicitly stated or an unrealistic raising of expectation which can not be met. We believe that the Local Offer must have some mandatory force for it to be of any value.

ix) 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. Yet, too often, disabled children and their families struggle to get the equipment they need. Charities and other o rganisations 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 via the Local Offer .

x) From our perspective, we would like to see the Local 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 to ensure that children with disabilities and terminal illnesses have access to safe and reliable travel regardless of age, disability, postcode or ability to pay). As yet, in the context of NHS and care service reorganisation, the commissioning, assessment and provision pathways remain unclear. 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. Now is an opportune moment 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 produced by Government.

March 2013

Prepared 22nd March 2013