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Earlier in December Government announced that all carers in receipt of Carer’s Allowance would receive a free GP Visit Card and further announcing a funding injection of €10m toward respite care. These are welcome signals that carers issues are becoming a focus of Government action. These measures come in the wake of the huge public response to the RTE Prime Time Special ‘Carers in Crisis’, which highlighted the plight of 5 family carers, representing thousands more in similar situations across the country. The theme of ‘Carers in Crisis’ has been prominent in the media over the past twelve months, beginning with Rosita Boland’s Irish Times article and the subsequent ‘Carers in Crisis’ series in the same paper. Family Carers Ireland was instrumental in highlighting these issues, pursuing them through political and media channels and facilitating access to carers for print and broadcast media.

Family Carers Ireland welcomes the announcement of GP visit cards to all in receipt of Carer’s Allowance. We emphasise however that only 1 in 4 carers actually receives Carer’s Allowance, mainly due to the means test; we would therefore ask that this measure be extended to all full-time carers. We are accordingly calling for all carers in receipt of the Carer’s Support Grant to receive this card, which would bring over 25,000 more into the net (a measure for which FCI called in its most recent and many previous pre-budget submissions). This is certainly a step in the right direction; but we must also question why it will take up to 6 months to implement, and note the issue of cost of medication and prescriptions that will remain.

In response to the announcement of €10m extra for respite care, again, this is a step in the right direction, but will not be sufficient to tackle the crisis that exists for carers in gaining access to regular respite breaks and emergency respite provision. Further, as 12 residential centres have been mentioned, there will still be a postcode lottery in terms of accessing these centres, depending on which county you live in.

Family Carers save the state €10 billion each year – both of these steps announced yesterday will cost approximately €21 million, so while both are welcome and deserve recognition, it is important that it is also recognised that there is a lot more to be done!

Family Carers Ireland welcomed Minister for Health, Simon Harris, and Minister of State for Mental Health and Older People, Jim Daly’s opening of a public consultation on home care services earlier in 2017.

“A statutory entitlement to home care has been one of the major policy asks of Family Carers Ireland for many years. While we welcome the consultation process as a signal of intent we are disappointed that the focus of the initial phase of the consultation seems to be on how best to reconfigure and regulate the existing services of home help and home care packages. While these are important questions, should the consultation remain this narrow it will exclude a variety of other vital supports such as respite care, aids and appliances, housing adaptation grants and transport. We are also concerned that the consultation appears to lean heavily towards older people. It is essential that the needs of those under the age of 65 with disabilities and life limiting conditions are also addressed.

The legislation it informs must provide for a comprehensive, integrated scheme – if it is not properly planned and adequately funded to meet the total care needs of every individual, including access to regular respite, regardless of age, geography or economic circumstances, we see a real danger that the overall result of this process would be increased charges with no discernible improvement to services.”

In recent years access to respite has become almost non-existent. Funding cuts, bed cuts as a result of HIQA inspections, staff shortages and the transfer of respite beds to longstay beds has greatly reduced respite availability and denied carers this vital support. Despite their importance, supports such as respite care and specialist therapies are only mentioned in the document in the context of seeking feedback on how they could work alongside home care services which are defined in terms of home help and home care packages alone. If the consultation is indeed this narrow in focus, it is hard to see how it leaves enough room for the much-needed re-imagining and significant altering of how care is provided in the home. Family carers look to Minister Daly to confirm that there is room in the consultation for these vital supports to be incorporated into any future statutory scheme.

Today, one in twenty people in Ireland is a family carer, providing some €10 billon in unpaid care each year. By 2030, demographic changes will require one in five to take on a caring role. It is of paramount importance that where a person is supported to remain at home with the help of a family carer then the carer’s own needs must also be assessed and addressed through a carers needs assessment, with resources to support carers to care safely and with dignity at home.

Family Carers Ireland provides a range of supports and services for family carers through its 22 resource centres nationwide and advocates fairness for carers. The organisation is currently running its year-long ‘Share the Care’ campaign to help family carers self-identify and seek supports. www.familycarers.ie

What is the Assisted Decision-Making (Capacity) Act and how can I learn more about it?

The Assisted Decision-making (Capacity) Act was signed into law on the 30th December 2015. The Act is a reforming piece of legislation which will abolish the Wards of Court system and repel that Lunacy Regulation (Ireland) Act, 1871. Essentially this means that those with difficulty making decisions about their finances, healthcare, living arrangements etc. will be helped, where possible, to make these decisions for themselves. Where this is not possible, a representative (possibly a family carer) will be appointed by the Circuit Court to make certain decisions.

This role, as well as other decision-making roles provided by the Act, will be supervised by the new Decision Support Service (DSS), to be based in the Mental Health Commission.

Ms. Aine Flynn was appointed to the role of the Director of Decision Support Services on October 2nd and has begun putting in place the necessary structures to commence operation of the Act (expected in late 2018).

The HSE along with the National Disability Authority are charged with responsibility for creating guidance documentation to help people understand the provisions of the Act. The HSE along with Family Carers Ireland will host an information session and focus group with families and carers in February/March 2018 (date and venue to be confirmed). If you’d like to attend this event please contact Clare Duffy to express your interest and she will contact you again in the New Year.

Email: cduffy@familycarers.ie or phone 086-7707231.

Family Carers Ireland members were invited by the Department of Health to make a presentation on February 8^th to the British Irish Council on the experiences of carers of people with mental health difficulties. Joan Higgins and Gina Delaney with FCI Policy and Public Affairs Manager Clare Duffy gave a presentation entitled ‘Experiences of Carers of People with Mental Health Difficulties’, and subsequently engaged in a discussion on the challenges facing carers for people with mental difficulties and the responses and initiatives that have helped address these. The meeting was attended by Minister of State for Health Helen McEntee and HSE Head of Service User, Family Member and Carer Engagement Liam Hennessy.

The British Irish Council was established under the terms of the Good Friday Agreement to promote the exchange of information and best practice across its member administrations (Ireland, Northern Ireland, Scotland, Wales, United Kingdom, Isle of Man, Guernsey and Jersey). The BIC has identified the issue of caregiving as a priority area for consideration within their work programme 2015 – 2017.

The National Carers’ Strategy Monitoring Group was established in 2013 to oversee and drive delivery of the national goals contained within the National Carers’ Strategy (NCS) and to do so through meaningful and positive engagement with the Government Departments and statutory bodies charged with responsibility for implementing it. The Monitoring Group is made up of representatives from Family Carers Ireland, Care Alliance Ireland and most importantly family carers and former family carers. The Groups work is focused on three distinct areas:

• Scoring Progress: We use Governments annual progress reports to performance monitor the implementation of the NCS and assign ‘verdicts’ to each of its 41 actions (Objective Achieved, Good progress, Initial Progress, No Progress, Regressive)
• Identify Policy Priorities:  Identify additional way in which objectives can be achieved and which will have maximum impact for family carers.
• Engagement with Government Departments: Meet and work in partnership with Government Departments in the implementation of the NCS and ensure family carers have the opportunity to inform and drive Strategy actions.

The NCS, published in 2012, signalled Government’s commitment to respecting carers as key care partners, and to responding to their needs across a number of policy areas. At the time of its publication, Government warned of the need to be pragmatic in terms of the limited financial resources available to deliver the Strategy, but promised that as Ireland’s economy improved so too would the level of investment allocated, and that departments would be given the opportunity to revisit the Strategy and propose additional actions. Family Carers Ireland is proud of the progress that has been achieved to date with little or no additional spending.

We acknowledge the spirit of partnership that has been shown by Government departments in working with the NCS Monitoring Group in implementing very practical changes aimed at better supporting family carers. While there has been progress, it has been limited by the lack of ring-fenced funds. Family Carers Ireland believes that the vision set out in the National Carers’ Strategy holds good; however, many of the cost-neutral actions have become dated and offer little opportunity for progression. We are therefore calling on Ireland’s new Government to commit to adequately fund a renewed Carers’ Strategy setting out a clear action plan for 2016-2020.

The full National Carers Strategy can be viewed here.

Our full scorecard for the second progress report, with detailed comments and assessment, can be viewed here; a summary of our scorecard is available here.