Proposed Government Plan 2024-2027 (P.72/2023): fifteenth amendment. Income Support (special payments) for carers of children with life-threatening, life-limiting illnesses, or complex healthcare needs.

This content has been automatically generated from the original PDF and some formatting may have been lost. Let us know if you find any major problems.

Text in this format is not official and should not be relied upon to extract citations or propose amendments. Please see the PDF for the official version of the document.

PDF version

STATES OF JERSEY

PROPOSED GOVERNMENT PLAN 2024- 2027 (P.72/2023): FIFTEENTH AMENDMENT

INCOME SUPPORT (SPECIAL PAYMENTS) FOR CARERS OF CHILDREN WITH LIFE-THREATENING, LIFE-LIMITING ILLNESSES, OR COMPLEX HEALTHCARE NEEDS

Lodged au Greffe on 27th November 2023 by Deputy L.V. Feltham of St. Helier Central

STATES GREFFE

2023 P.72 Amd.(15)

PROPOSED GOVERNMENT PLAN 2024-2027 (P.72/2023): FIFTEENTH AMENDMENT

____________

1 PAGE 3, PARAGRAPH(h)–

After the words "Appendix 2 – Summary Tables 5(i) and (ii) of the Report" insert the words –

", except that, in Summary Table 5(i) the Head of Expenditure for Customer and Local Services should be increased by £600,000 to enable special payments to be paid to any household in which a member of the household is a child who has been diagnosed with or recognised as having a life-limiting condition, a life- threatening condition, or a complex healthcare need, by a healthcare professional"

2 PAGE 3, PARAGRAPH(l)–

After the words "as set out at Appendix 3 of the Report" insert the words –

", except that, on page 90 after the words "benefits for many years to come." there should be inserted a new paragraph as follows –

"Funds have been allocated for 2024 to support a non-statutory scheme, equivalent to the child personal care benefit, for children diagnosed with or recognised as having a life-limiting condition, a life-threatening condition, or a complex healthcare need. During 2024 the Government will undertake a review of the relevant legislation in order to extend this provision in legislation for future years."

DEPUTY L.V. FELTHAM OF ST. HELIER CENTRAL

Note: After this amendment, the proposition would read as follows –

THE STATES are asked to decide whether they are of opinion

to receive the Government Plan 2024 – 2027 specified in Article 9(1) of the Public Finances (Jersey) Law 2019 ("the Law") and specifically –

to approve the estimate of total States income to be paid into the Consolidated Fund in 2024 as set out in Appendix 2 – Summary Table 1 to the Report, which is inclusive of the proposed taxation and impôts duties changes outlined in the Government Plan, in line with Article 9(2)(a) of the Law;
to refer to their Act dated 30th September 2016 and to approve the application of existing resources for work on the development of user pays'

charges in relation to all aspects of waste, including commercial and domestic liquid and solid waste;

to approve the proposed Changes to Approval for financing/borrowing for 2024, as shown in Appendix 2 – Summary Table 2 to the Report, which may be obtained by the Minister for Treasury and Resources, as and when required, in line with Article 9 (2)(c) of the Law, of up to those revised approvals;
to approve the extension of the use of the existing Revolving Credit Facility to include the provision of funds that would otherwise be implemented through bank overdraft or bank overdraft facilities under Article 26 (1)(a) of the Law, should they be needed, subject to the limits outlined in that article;
to approve the transfers from one States fund to another for 2024 of up to and including the amounts set in Appendix 2 – Summary Table 3 in line with Article 9(2)(b) of the Law;
to approve a transfer from the Consolidated Fund to the Stabilisation Fund in 2024 of up to £25 million, subject to a decision of the Minister for Treasury and Resources based on the availability of funds in the Consolidated Fund as at 31 December 2023 in excess of the estimates provided in this plan, or from budgeted underspends identified before 31 December 2024;
to approve each major project that is to be started or continued in 2024 and the total cost of each such project and any amendments to the proposed total cost of a major project under a previously approved Government Plan, in line with Article 9(2)(d), (e) and (f) of the Law and as set out in Appendix 2 - Summary Table 4 to the Report;
to approve the proposed amount to be appropriated from the Consolidated Fund for 2024, for each Head of Expenditure, being gross expenditure less estimated income (if any), in line with Articles 9(2)(g), 10(1) and 10(2) of the Law, and set out in Appendix 2 – Summary Tables 5(i) and (ii) of the Report, except that, in Summary Table 5(i) the Head of Expenditure for Customer and Local Services should be increased by £600,000 to allocatefunds to enable special payments to be made to any household in which amember of the household is a child who has been diagnosed with orrecognised as having a life-limiting condition, a life-threatening condition, or a complex healthcare need, by a healthcare professional;
to approve the estimated income, being estimated gross income less expenditure, that each States trading operation will pay into its trading fund in 2024 in line with Article 9(2)(h) of the Law and set out in Appendix 2 – Summary Table 6 to the Report;
to approve the proposed amount to be appropriated from each States trading operation's trading fund for 2024 for each head of expenditure in line with Article 9(2)(i) of the Law and set out in Appendix 2 – Summary Table 7 to the Report;

to approve the estimated income and expenditure proposals for the Climate Emergency Fund for 2024 as set out in Appendix 2 – Summary Table 8 to the Report; and
to approve, in accordance with Article 9(1) of the Law, the Government Plan 2024-2027, as set out at Appendix 3 to the Report, except that, on page 90 after the words "benefits for many years to come." there should be inserted a new paragraph as follows –

REPORT

Purpose

The purpose of this amendment is to ensure that parents and carers of children with life- threatening or life-limiting conditions, or a complex healthcare need, can access financial support to assist them with the additional expenses and financial pressure experienced due to the additional care needs associated with the illness.

Background

Currently, there are many families that include a child with a life-limiting or life- threatening condition, or a complex health care need, that receive no financial support from Government. This is despite the additional costs of providing care, the loss of income from only being able to work reduced hours, or the need for a parent or carer to take a break from work entirely due to their caring requirements. This results in families being put into undue emotional and financial stress at an incredibly difficult time, and places them into a situation where they are reliant on the support of charity. The issue is exacerbated because many of the children are required to travel off-island for periods of treatment and/or maybe the only child on the Island with their condition.

As outlined in the Health Minister's answer to WQ. 422/2023 a care pathway for children with complex care needs was launched in 2016 based on the principles set out by the UK charity Together for Short Lives' that is considered to reflect best practice in the UK. This pathway is managed jointly by the HCS Paediatric team and Family Nursing and Health Care (FNHC). Up to the end of 2022, there were 58 children managed on this pathway.

Together for Short Lives identifies four groups of life-threatening or life-limiting illnesses, which I include as an example of the types of conditions that this amendment relates to:

These conditions are also recognised by Children, Young People, Education and Skills which provides some support services via the Children and Families Hub (WQ. 421/2023).

Access to benefits is also recognised within the Together for Short Lives Core Care Pathway for Children with Life-threatening and Life-limiting Illnesses. The Minister for Social Security confirmed in her answer to WQ.420/2023 that the only financial support offered to families with children with chronic health conditions is the Child Personal Care Benefit, Home Carer's Allowance, and Income Support. However, there is currently no recognition of many life-threatening or life-limiting conditions, or the complexity of care need, within the income support or social security legislation because the nature of the conditions mean that many of the children do not meet the impairment criteria set out in the Income Support (Jersey) Regulations 2007. Therefore, many families cannot receive the Child Personal Care Benefit or the Home Carer's Allowance despite children requiring complex or continuing care. Further, families with a mortgage are most likely not to meet the income support means test due to mortgage payments not being included in household expenditure for income support claims. This leaves families with no financial support from Government despite financial stress due to the increased costs associated with health care, and loss of income if a carer is unable to work in their usual employment.

Currently, the Child Personal Care Benefit is available to families with children who have a high level of long-term illness or disability, but not for families with life-limiting or life-threatening conditions. This is at odds with the best practice outlined within the Together for Short Lives Guide to Children's Palliative Care, which states:

Many children with life-limiting or life- threatening conditions need the same good quality universal services as disabled children. However, the increased likelihood or certainty of death in childhood or young adulthood for a child with a life-limiting or life-threatening condition adds a degree of complexity and urgency to the care that is needed for the child, and the increased support that is needed for the family. These children often need additional planning to meet their fluctuating, unpredictable and sometimes urgent need for dedicated children's palliative care services.

There should be close working between services for children with life-limiting or life-threatening conditions and those for disabled children to achieve joined- up provision which enables them to maximise their potential and live life to the full.

P.10, The Guide to Children's Palliative Care, Together for Short Lives

Child Personal Care Benefit is paid at a rate of £175.28 per week if a child is assessed at level three of the Personal Care Component of the Income Support (Jersey) Regulations 2007. In consideration of the need for increased support outlined above I believe it would be proportionate to realign the criteria so that children with life-limiting and life-threatening illnesses are assessed at this level. However, this amendment will enable the Minister for Social Security to work with the Minister for Health and Community Services, and the Minister for Children and Education, to get professional assessments to inform definitions and criteria ahead of making legislative changes.

Conclusion

The financial element of this amendment ensures that funding is available so that families can get the equivalent of Child Personal Care Benefit through a non-statutory benefit in 2024. The amendment also requests the Assembly to agree in principle to the Minister for Social Security bringing forward updates to the relevant legislation so that life-threatening and life-limiting illnesses, and complex care needs, are acknowledged and assessed for financial support.

Financial and staffing implications

It is estimated that 50 – 60 families may meet the criteria for support at any given time. Therefore, it is estimated that the cost of the non-statutory benefit will not exceed £550,000 in 2024. There may be some administrative costs associated with establishing the benefit and drafting legislation for future years, therefore I have included £50,000 to ensure that this is accounted for.

I have left the source of funding to Ministers' discretion. If they are unable to identify a suitable source within current Heads of Expenditure the additional draw on the consolidated fund would not lead to a negative balance.