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Support for senior parents of children with Downs Syndrome

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WQ.490/2021

WRITTEN QUESTION TO THE MINISTER FOR HEALTH AND SOCIAL SERVICES BY DEPUTY K.G. PAMPLIN OF ST. SAVIOUR

QUESTION SUBMITTED ON MONDAY 6TH DECEMBER 2021

ANSWER TO BE TABLED ON MONDAY 13TH DECEMBER 2021

Question

Will the Minister state what financial, practical and care service support, if any, exists for parents and carers of children with Downs Syndrome where the parents or carers may themselves be retiring, entering care homes or in need of care at home?

Answer

Everyone in Jersey can access the care they need through the long-term care scheme and services provided by Health and Community Services (HCS). Aside from this, financial help is available through Income Support for low-income households. Severely disabled children and young adults who live with their parents in Jersey qualify for a range of payments from Income Support. These payments are independent of the income of their parents.

There would be situations where parents and carers who have retired continue to provide care, but if the situation was such that they were no longer in a position to do so then the (adult) child would have their care needs assessed in their own right and an appropriate package of care would be put in place. Services commissioned after assessment would cover adult social care and HCS support. Following assessment of need, a care plan would be agreed which could include services commissioned via the long-term care scheme, HCS commissioned services, short-break services, domiciliary or shared living services or services provided by third-sector colleagues.

In addition, a Community Learning Disability Team is available to any adult with a learning disability which provides integrated health & social care support that is centred on the individual with learning disabilities and supports the person, their families and carers as well as other health and social care agencies or service providers. These professionals enable health improvements and reduce potential barriers in accessing mainstream services using reasonable adjustments to achieve a positive outcome.

In relation to family members providing care, the work done by all family carers is extremely valuable to Jersey and Government support is already available through a range of schemes.

The long-term care scheme acknowledges the role of family carers within the overall care package for an individual and provides financial support towards respite breaks. The Income Support benefit provides additional support of £51.38 a week to a family carer of any age living in an Income Support household, on top of their normal Income Support entitlement. The Employment Law gives all workers the right to request flexible working to help them arrange caring responsibilities around paid work outside the home.

In addition, through Local Services there is a number of clusters which see Government and Civil Society working to support islanders in specific areas such as Learning Disability, Older Persons, Cancer, Children and Young People, Homelessness and Mental Health as well as Government's work to deliver the Disability Strategy.

The Social Security Minister has previously announced plans to provide extra financial support for family carers in the Government Plan. This project – Care Needs at Home – was originally planned for 2020 but has been delayed due to Covid. The project will look at the extra household expenses incurred when a family is providing care to a family member at home. The project has recently restarted and will continue into 2022. The intention is that a new tax-funded payment will be created and budget has been set aside for this purpose.

In addition, the Home Carer's Allowance is a contributory benefit provided through the Social Security scheme. It is available to a working aged adult who gives up full time work in order to care for someone who has high care needs. This benefit is paid at the standard rate of £232.47 a week and requires the carer to  satisfy  contribution  conditions.  In November  2021,  the States Assembly  agreed  a change to  the Allowance. This will allow carers to undertake paid work for up to 15 hours a week and still claim the full HCA weekly amount. Previously, carers were restricted in the amount of wages that could be earned from an outside job. The change to hours was made following requests from carers to provide more flexibility in this area. When a carer is receiving HCA, they also receive a full pension record for that period.

At pension age, if a carer is already receiving HCA, the Law allows them to choose between continuing to receive HCA or moving to their old age pension. In this way, the carer can choose the benefit which is most advantageous to them. It is not possible to make an application for HCA if the carer is a pensioner when they first make a claim.