Armagh and Dungannon Health & Social Services Trust

British Medical Association (Northern Ireland)

Barnardo's Northern Ireland

British Association of Social Workers

CARERS Northern Ireland

Centre for Independent Living - Belfast

Children's Law Centre

Craigavon & Banbridge Community HSS Trust

Foyle Health & Social Services Trust

Home First Trust

Mencap in Northern Ireland

Newry and Mourne Health and Social Services Trust

Northern Health and Social Services Board

Northern Health & Social Services Council

Northern Health and Social Services Registration and Inspection Unit

North & West Belfast Health & Social Services Trust

PRAXIS

Royal College of Nursing, Northern Ireland

South and East Belfast HSS Trust

Southern Health & Social Services Board

Sperrin Lakeland Health and Social Care Trust

Ulster Community & Hospitals Trust Health & Care Centre

Western Health & Social Services Board

5 October 2001

Thank you for the opportunity to comment on the above Bill.

The issues that have been raised with us by our staff in relation to these matters would centre round the various points and I will deal with them on that basis.

Point 6

It is agreed that the clarification made here is important so that clients who have refused can still have their carers being provided with a carer's assessment. This, of course, gives appropriate recognition to the rights of both people in line with current legislation. It should however be borne in mind that this clearly will have financial implications over and above service that is currently provided.

Point 7 and 8
It is a significant step forward in indicating that young carers - 16 & 17 year olds - who in the past were not appropriately recognised for their caring duties now have the possibility of direct support to them, and this is to be welcomed.

Point 9
It is not entirely clear how this voucher system will work, and again will this require a full monitoring requirement for Trusts in relation to such a direct payment.

It is clear that if Trusts have the ongoing legal responsibility to monitor all direct payments then there is a significant resource issue given that this system is in addition to systems already set in place to monitor direct service provision. This has had ongoing implications for the Trust given that Health & Social Services Boards and Trusts were directed from the 1st April 1996 to provide services for carers but again no recognition was made of the financial implications of this provision.

Point 12
The indication of a direct payment in relation to a short term rehabilitation situation will be one which could readily arise in a conflictual situation with the development of Intermediate Care Schemes in most Board areas.

Point 14
It is clear that if the Bill imposes duties on the Trust to provide these services, then there will be inequity in relation to Boards seeking to provide services on a similar basis to other client groups. The implicit recognition by the Department that Boards have the inability to provide all services as assessed is a significant issue here. It is impossible to understand how this duty will sit with the idea identified in Point 16 stating a cost neutral environment.

Point 16
The overall cost of direct payments and separate monitoring and support systems that are necessary have not been costed nor paid for by Boards to this point in time, so this adds considerable additional resource to each individual Trust as well as the need identified for these carers who would not have been identified in the past. There are significant additional resources required and to suggest that this will be cost neutral could not be seen in any way to realise the need for appropriate services to carers in this area. It will therefore bring Trusts into significant conflict with their other provisions if this is seen as cost neutral.

I trust these comments will be of help to you in taking this matter forward but it is important that proposals which have clear cost implications are appropriately funded otherwise other people lose out in the provision of these services rather than they being additional.

2 October 2001

Further to your correspondence regarding calling on all interested organisations to forward comments on the forthcoming Health, Social Services (amendment) Bill, please find enclosed a response from the Northern Ireland Consultants and Specialists Committee on this issue.

If you have any queries, or wish to discuss our response, or other health issues, in greater detail, the British Medical Association would be happy to meet with the Health Committee.

In response to the proposed Personal, Social Services (Amendment) Bill, NICSC would like to comment on section 16 of the 'Memorandum on the Proposed Personal Social Services Amendment Bill (formerly referred to as the carers and disabled children bill).

17 October 2001

Barnardo's NI provides a direct service to young carers as well as a variety of services for disabled children and have a strong interest in the progression of this bill. Our young carers service works in the Home First Trust area and provides advice and support to many young carers some of whom have been referred by social services but some of whom are self referred. It may interest the Committee members to know that in our experience the average age of a young carer in Northern Ireland is 14.

I have enclosed a copy of our submission on the bill to the DHSSPS and would be grateful if you could give it to the Committee members prior to their discussions.

The main issues we have raised are:

• The need for health and social services trusts to have a duty to provide services to carers as opposed to simply a power. This is particularly important in the case of young carers who may well be missing out on education and social supports because of the their caring responsibility.
• The right to an assessment needs to be clarified particularly in-relation to young carers and we have detailed this in our attached response.
• How will assessments be triggered?
• How will this legislation fit with the Children's Order?
• Will there be an advocacy service provided for young carers?
• How will these changes be resourced?

Barnardo's would be happy to provide evidence to the Committee on the issues affecting young carers and to allow them to hear from young carers if they would find this helpful.

I look forward to hearing from you.

• A family that can cope
• Opportunities to learn
• Emotional, physical and mental health
• Protection from harm
• A sense of belonging in the community
• A stake in society.

In addressing the issues within the proposed Bill we have specifically drawn on our work with disabled children and their families and our work with young carers.

We have outlined below the main points in relation to the Bill.

1. We welcome the broad thrust of the policy aimed at freeing up young carers to be children.

2. We are concerned that the Bill proposes giving the "power but no duty" to provide services. In our experience this often translates into budgetary pressures meaning services are not provided after an assessment has raised expectations.

3. We are concerned in relation to assessments;

3.i Who exactly has the right to an assessment under the Bill - do children and young people under 16. Barnardos practice suggests the average age of a young carer in Northern Ireland is 14 and it is therefore crucially important that this issue is addressed.

3.ii If children and young people under 16 do not have the right to an assessment under the Bill then under which piece of legislation is their right to an assessment enshrined?

3.iii In the English guidance to their legislation it is suggested that children and young people would be assessed under the framework for the Assessment Of Children In Need And Their Families (guidance to the Children Act).

It must be noted that this guidance does not operate in Northern Ireland and any assessment under the Children Order must address this.

We are concerned that the DHSSPS has indicated it has no plans to introduce this framework to Northern Ireland or any alternative. Yet the English guidance to local authorities on the Bill clearly indicates that, "Whatever the circumstances the framework for the Assessment of Children In Need and their families" remains the main source of guidance for local councils when dealing with children.

A key question still to be answered for Northern Ireland is how will this Bill sit with the Children Order?

3.iv It is unclear in the Bill how assessments will be triggered. Will all carers automatically be assessed or will they automatically be offered assessments and if so will this periodically be reviewed.. How often will this be?

3.v How will the information in relation to the right to assessment be provided and how in particular will guidance ensure it is offered in a way appropriate and accessible to children and young people.

4.i Under the existing Carer's Act it is only possible to purchase services determined by a Trust - will this continue to be the case or will carer's, parents and disabled young people be able to decide what is the most effective use of a direct payment and purchase services accordingly.

4.ii Through our experience in working with young carers we know it is essential that the criteria for deciding who is a carer and for offering services must be as flexible as possible. The impact of caring on young carers is much greater and can greatly affect their future life chances.

4.iii We wish to express our concern regarding the current range of support services available to young carers and the need to ensure these are widely available. It is also crucial that these services are broad enough to encompass the full range of needs young carers may have including their health, educational, physical, respite and social needs.

4.iv The budgetary responsibility for meeting young carers needs must be clearly designated in the guidance accompanying the Bill.

The needs of young parents are not addressed in the Bill. However, all of the Board's Children and Young People Services Plans identify young parents under the Young Carers banner.

Young parents face many barriers and access to direct payments, particularly for childcare to enable them to return to education, post 16 is essential.

This is not currently addressed within any legislation, and this Bill provides a unique opportunity to address their needs.

We welcome the right of disabled young people to direct payments but would emphasise the need for appropriate support to be put in place to enable them to use this.

The Carer's (Recognition & Services) Act 1995 enacted from April 1996 gave Carers the right, to an assessment of their ability to care, when an assessment was being carried out on the person for whom they were caring. The Act was not extended to N. Ireland but Trusts were required to enact it. However, from social work experience, few Carers request a formal assessment in their own right. This is consistent with the findings of a survey "Still battling" by the National Carers' Association 1997. In N. Ireland "fewer carers are aware of carer's assessments and are less likely to ask for one."

Trust were not given the power to offer carers services to support them in their caring role but, in practice, services being provided for the client have contributed to meeting Carers' needs.

This Bill proposed to introduce new legislation to offer new support to carers.

1. Trusts will be given the power to provide services directly to the Carer. The significant difference being that Carers will be able to request a formal assessment even when the client has refused support.

2. Trusts will have the power to give Direct Payments to Carers, including:-

(a) 16 and 17 year old Carers to meet their assessed needs;

(b) to parents of children with a disability and

(c) to 16 and 17 year old disabled children to meet their assessed needs.

This is a significant and welcome extension of Direct Payments legislation. Current criteria exclude close family members, especially, if living within the same household which is one of the reasons for poor uptake. 16 and 17 year olds are excluded, as are parents of a child with a disability.

(a1) It is difficult to assess whether there will be a significant response from 16 and 17-year-old carers. Despite abundance of legislation on their behalf i.e UN Rights of the Child 1989; the Children Order 1995, where young carers may be assessed as 'children in need' and the Carers Act 1995, young carers are reluctant to identify themselves as Carers.

The new proposal could provide social workers with a new resource, with which, to encourage young carers to seek payment for a relief carer for an ill/disabled parent. The provision of financial assistance may help ameliorate the sense of guilt in asking someone else to care for a parent who also may be reluctant to seek help outside of the home. Also direct payment offers young people a choice and may enable them to concentrate on their education.

(a2) Direct Payment to Carers, in general, is welcome as it provides a sense of independence and relief from caring. The vast majority of carers, 66%, living with their parent/partner and are unemployed. Many will receive Invalid Care Allowance, which may negate Direct Payments. However Direct Payments enable whose in employment, 34%, especially those on low income, to pay someone to care in their absence, giving them some freedom and thereby alleviating stress.

(b) This new provision will have a significant and welcome impact on the lives of parents of children with a disability. Many parents, especially single parents, are exhausted in their care of children with complex disabilities. Financial help will give them the choice of purchasing hours from Care Providers. Direct Payment will enable them to approach childminders without embarrassment. Many parents are deprived of sleep, ability to devote time to other children, keep appointments and socialise. This will provide funding for assessed services, the spending on which will be monitored. Direct Payments should not interfere with other benefits such as Income Support, Job Seekers Allowance, Family Credit, Disabled Working Allowance or Housing Benefit. Direct payments are disregarded as taxable income.

(c) The provision of Direct Payments to 16 and 17 years olds who are disabled for their assessed needs is an excellent provision. It empowers a young person to pay someone, of her/his own age, to accompany him to social events or whatever s/he wishes. It offers choice in terms of personal care to relieve a parent and her/his embarrassment. Those under eighteen do not receive a care management assessment and even if eligible parents may refuse the service stating that they can cope. Parental caring, sometimes, can remove choice and dis-empower the young person.

3. The proposed voucher will provide a choice for carers and clients. It is not clear whether Social Services are expected to accommodate the client or to commission from recognised sources of respite care or independent holiday accommodation. Presumably this can be flexible.

4. Other change

(1) This proposal requires the Trust to make a Direct Payment once an assessment for services is made. Prior to this it was not mandatory although good practice.

(2) This proposal allows Direct Payments to be made to parents of disabled children to assist them in their parenting role. This is an excellent extension of Direct Payments, as children are not covered by ILF or Care Management. This will enable parents purchase assistance to help them accompany children to social/sporting events. eg young fathers/mothers would love to take son/daughters to football matches, swimming, but cannot look after them which can detract from parent/child relationship and cause distress.

(3) It is proposed to make direct payment available for rehabilitation. This will be in response to assessed need and may free beds elsewhere.

The extension of direct payments is a very positive action and will be welcomed by both staff and carers. The proposed increase will apply for the first time to: carers living in the same household; parents of children with a disability and for disabled parents to use for their children; 16 and 17 year olds who are disabled and 16 and 17 year olds who are young carers along with vouchers for short term respite breaks or rehabilitation.

The impact, depending on level of uptake, of this extension of Direct Payments is increased work for social workers and probably care managers as all Direct Payments are based on assessed need, with monitoring of services/ resources purchased. Commensurate with demand for assessment is the question of funding. This proposal again raises the issue of advice if the carer becomes an employer and highlights the need for a centre for Independent Living in Belfast, modelled on those in England.

Section 14

Currently Trusts have a duty to assess need but do not have a duty to provide services.

While acknowledging the reality of finite resources this dichotomy is ambiguous, causes confusion for clients and places additional pressure on social work staff. This amendment appears to reaffirm the status quo and negate the initial proposals where Trusts were required to make a direct payment in response to assessed need.

Section 15 (Options considered)

This is very restrictive as it focuses on one of the new proposals only i.e. carer's right to assessment when the client refuses assessment. The original "power to supply services" has been changed to "permitting a Trust to provide those services". This dilutes the proposal completely if additional funding is not available.

Section 16 (Cost implications)

The proposals may be "cost neutral" if based solely on the balance between domiciliary v residential care. This is a very narrow and unrealistic response if the new proposals for direct payments are to be implemented. The majority of carers continue to care, despite additional pressure, without collapse or recourse to institutional Care, especially in the younger age group.

If as proposed for the first time that direct payments are made to

(a) carers living in the same household

(b) parents of children with a disability and to disabled parents for use on their children and

(c) 16 and 17 year olds who are disabled or who are young carers

then additional funding is essential on two grounds:

(1) the actual direct payment and

(2) additional social work staffing levels to assess and monitor such allocation.

In no sense can full implementation of the initial proposals be "cost neutral". Enactment of this Bill will raise expectations; increase demand for assessment and result in frustration for clients and social workers unless funding is available.

In conclusion, the proposals in the initial Bill are excellent but have a negative impact if not accompanied by adequate funding. HSS Trusts have to prioritise to maximise services in response to assessed need and always within a finite budget. Due to this and being mindful of opportunity costs additional new money will need to be allocated to meet these new proposals.

2 October 2001

Thank you for your letter of 7th September, and for the opportunity to make comments on the Department's proposals. We have talked to a number of carers and carers organisations about these proposals and welcome the opportunity to raise these with the Committee.

We welcome the provision which will give carers in Northern Ireland a new statutory right to a separate Carer's Assessment of their ability to provide care. We welcome the fact that the right to separate assessment will no longer be dependent upon the person cared for being assessed for community care or children's services. We hope that the legislation will make clear that separate assessments may be carried out in a range of circumstances. This may be necessary not just because the person cared for refuses assessment, but also for other reasons. The most common of these in current circumstances is the carer not being aware at the time of the Community Care Assessment that they actually had a right to carer's assessment.

Since the introduction of the Guidance on Carers Assessments in 1996, our experience indicates that the vast majority of carers in touch with the personal social services have not been informed that they have the right to ask for an assessment. Since the onus is on carers to ask for an assessment, they therefore have no opportunity to avail of this provision. This, it appears to us, is the real difficulty with the current provisions, even more than the fact that the right comes through guidance rather than statute. Carers and carers groups feel strongly that, rather than the onus being on the carer to request the assessment, Health & Social Services Trusts should be required to automatically offer a carer's assessment wherever they identify someone who is providing, or is intending to provide, regular and substantial care.

We welcome the recognition that carers need proper support in order to undertake and continue in their role. We would welcome increased access to creative and responsive support services to enable carers to be confident and effective in their caring role, and enabled to maintain a life outside of caring.

However, it is clear that for the vast majority of carers, what will continue to fulfil this function most effectively is an adequate level of quality, 'tailor-made' services delivered to the person cared for. This would include, perhaps most critically, access to services which enable carers to avail of short breaks, or respite, in their caring. It is difficult to envisage a great range or volume of services that would actually be services for the carer.

This raises a question that the Committee may wish to consider in some depth. The proposals in their current form give a power on Health & Social Services Trusts to provide services to carers to meet identified need, but do not impose a duty to do so. Many carers feel that this will render their right to an assessment meaningless, as they foresee that nothing will change on the basis of the assessment. Our view would be that there would be few services identified by a carers assessment that would actually be services to the carer as opposed to services to the service user, which may benefit the carer. In addition, one would assume that eligibility criteria would be established to determine access to these, as to other services. Identification of need would therefore only lead to service delivery where the level of need justified this. Our feeling, therefore, is that imposing a duty to provide carer services on the basis of identified need would not have excessive cost implications. We feel that the evidence from Britain should be examined thoroughly before making this decision. It should be possible to identify the additional costs of providing services to carers. It would be important also to look at the scale of unmet need, and to be cautious that the costs associated with services are not inflated by a reconfiguring of services that would, in any case, have been delivered to service users.

However, given that the argument is that services delivered directly to carers are unlikely to be a significant factor in practice, an alternative would be to consider the approach taken by the Scottish Executive. Instead of recasting carers as service users we should perhaps view them as partner providers, and explore ways of using the assessment process to support them more effectively in that role.

Direct Payments can offer a great deal more flexibility and choice to those who wish to use them. They also impose a great deal of responsibility. We would be wholeheartedly be behind the extension of direct payments as outlined in the proposals as long as:

No carer, young carer or disabled parent is ever put under pressure to exercise this option, as some people would find Direct Payments very stressful and

Proper guidance and support is made available for those who do wish to take it up. Young people, in particular, may need skilled help, and possibly advocacy. The Department should consider the need for an Independent Living Centre for Northern Ireland, along the lines of the Centre developed recently in the Eastern Board.

Parent carers of people with learning disabilities have expressed particular interest in this scheme, and all parent carers will welcome anything which offers extra choice, flexibility and support to enable their children to manage the transition to adulthood. We particularly welcome the extension of Direct Payments to people who need only short-term support. Carers of people with mental health problems are particularly concerned that all programmes of care allow access to this opportunity.

We support the proposal that Health & Social Services Trusts should be required to make direct payments to anyone that asks, if they meet the conditions. Applying the conditions of the scheme surely is sufficient to ensure only appropriate uptake. Given the low take up, it is helpful to ensure that all real and perceived barriers are removed.

We welcome the idea of increasing choice and flexibility of service by giving Trusts the power to run short-term break voucher schemes. Short-term breaks, or respite, of more than a couple of hours tend to require the service user to go into a residential facility. There are problems with the availability of respite, particularly for certain client groups, and there is little flexibility.

However, the key concern of carers is with the availability of sufficient levels of high quality, responsive, age-appropriate respite care, rather than with the mechanisms used to deliver it. Before instituting any voucher scheme, it must be absolutely guaranteed that enough providers are participating to offer the necessary range and volume of provision.

The proposals for young carers and for disabled parents seem to be designed to support young carers to be children, rather than to be carers. Carers Northern Ireland wholeheartedly welcomes this approach. We feel that there may be a need for advocacy to ensure that support is genuinely geared towards freeing young carers up, rather than tying them down. We suggest that it might be particularly valuable for the committee to hear directly from young carers, and the organisations working closely with them in Northern Ireland with regard to the details of the proposals and their possible impact on young carers.

We feel strongly that it is too simplistic to characterise the proposals as 'resource neutral'. We certainly agree that in global terms, support for carers prevents admissions to hospital and to long term residential or nursing home care, as well as preventing physical and emotional problems amongst carers themselves. There are powerful economic arguments for providing effective support to sustain carers in their caring role.

However, unless the benefits that accrue to the Health and Social Services as a whole are actually transferred to the Health and Social Services Trusts which will be operating the proposals, we fear that there will be no positive impact whatsoever on the ground. Even worse, we fear that the proposals will be greeted with resentment and suspicion by workers within health and social services trusts, and that relationships between carers and professionals may actually deteriorate, rather than improve.

We believe that the motivation behind these proposals is a genuine desire to simplify and improve support for carers. We applaud that intention, and hope that the Trusts will be provided with the resources that they clearly need to turn that vision into reality.

Carers Northern Ireland would be happy to support the committee's deliberations in any way that we can. We are happy to provide briefings on all or any aspects of the bill, to provide written or verbal evidence to the committee, or to supply details of groups or individuals who may be able to comment on particular issues.

It would be very helpful if you could let me know what the legislative timescale is likely to be, or indicate where I can find that information.

22 October 2001

Please find enclosed CIL - Belfast's response to the consultation on the Carer's and Disabled Children's Bill. I hope the Committee will find our comments useful in its consideration of the Bill.

I would be grateful if you would include our organisation in future consultations or mailings in relation to the Bill and related legislation.

The Centre for Independent Living - Belfast (CIL - Belfast) is an organisation lead by disabled people for disabled people, which provides empowering services to promote independent living by disabled people, regardless of age or impairment, and specifically in respect of Direct Payments within the Eastern Health & Social Services Board area. The project aims to:

• To promote the principles of the Independent Living Movement in the context of the social model of disability.
• To provide empowering services to disabled people to enable them to take a full and active part in the community in which they live.
• To provide a range of support services which disabled people may need to manage their own personal assistance.

Over the next three years the Centre for Independent Living - Belfast will address a range of issues which impact on independent living but it is envisaged that the primary focus of the project will be to promote the use of Direct Payments as an effective way to achieve independent living by providing support to users or potential users of Direct Payments.

CIL - Belfast broadly welcomes the introduction of the Carer's and Disabled Children's Bill, in particular the extension of direct payments to 16-17 year olds. However, it is important to keep in mind why direct payments were introduced in the first instance.

The Community Care (Direct Payments) Act and the subsequent Northern Ireland Order came about because disabled people campaigned for it. They saw it as an effective way to enable independent living. The key purpose of direct payments is "to increase users independence by giving them more control over the way the community care services they receive are delivered." (Policy Guidance). Any extension of direct payments to other groups must not undermine this basic principle.

We welcome the proposal to give carers a right to an assessment but would like to see some safeguards for ensuring that, 'in circumstances where the person being cared for has refused an assessment for, or the provision of, services', the disabled person isn't forced to accept inappropriate services against his or her will.

Any decision to give a direct payment to a carer must not take away choice or control from the disabled person. If there is any conflict between the interests of a carer and a disabled person, a direct payment should only be given to a carer if the proposed service preserves or increases the disabled person's independence. If this is not the case it should not be considered.

The consultation document does not make it clear that a carer cannot get a direct payment for any service of "an intimate or personal nature" for the disabled person, as is the case in the GB legislation. This needs to be clearly stated to avoid any misunderstanding about the scope of direct payments to carers.

We welcome the proposal that 16-17 year old carers are being offered flexibility and choice in how their needs are met, but we would argue that more attention needs to be paid to assessing and meeting the needs of the disabled adult, which would reduce the demand on children.

Direct payments will give greater flexibility and choice to parents of disabled children, which will enhance the lives of the parents and their children.

We welcome the extension of direct payments to 16-17 year old disabled people. This represents an opportunity for young disabled people to begin determining their own lifestyles. It is likely that young people, taking on the management of their own workers, will need a considerable level of support. Also, it would need to be clarified if there are any legal barriers to 16-17 year olds entering into contracts to employ staff.

We would have some concerns that the voucher scheme might result in disabled people being placed in inappropriate respite facilities if it is limited to approved providers. This will require imaginative development to ensure that disabled people have acceptable choices.

It is not clear in Paragraph 4 what is being proposed by requiring "Boards and Trusts to make a direct payment where someone has been assessed as needing services requests a direct payment". Is this saying that Boards and Trusts must provide a Direct Payments scheme? Are they not required to do this already? It could also be interpreted as meaning that a person has a right to any service they have been assessed as needing and a right to get a direct payment in respect of that service. This needs to be clarified.

We are particularly pleased at the proposal to allow direct payments to support disabled people in their parenting role. This recognises that disabled peoples lives extends beyond their own personal care needs and the new measures will make a significant difference to many disabled people.

Any change to direct payments legislation must protect the principle of choice and control for disabled people. Much of the burden on carers results from inadequate provision of services for disabled people. The provision of well-resourced services for disabled people would mitigate much of the need to support carers.

It is likely that the impact of these changes will be minimal if there is no additional money allocated to implement the changes. This problem has been demonstrated in the past and may be one of the factors that has contributed to the low uptake of direct payments in Northern Ireland.

Contact: Philomena McCrory,
Project Co-ordinator
Centre for Independent Living - Belfast
NICVA
61 Duncairn Gardens
Belfast BT15 2GB

Tel: 028 9087 5001
Fax: 028 9087 5002
Textphone: 028 9087 5003
E-mail cilbelfast@nicva.org

21 May 2001

Thank you for affording the Children's Law Centre the opportunity of commenting on these proposals.

The framework for our response is The United Nations Convention On the Rights of the Child. We believe that a rights based approach must be taken to the provision of services to children and young people. It is essential that all assessment procedures are grounded on the best interests of the child and that pursuant to Article 12 UNCRC all children and young people are involved in a supportive manner in decision - making processes, which affect their lives.

It must be recognised that young carers needs are wide ranging and must be integrated with the needs of the family as a whole, including the need for respite care, educational help, health issues, transport help, counselling, advice, social and leisure pursuits etc. As a starting point we need to ensure that there is a wide range of projects available to help young carers and that these are informed by the voices of young carers themselves in terms of their needs. These services are at present geographically uneven.

We are broadly supportive of the introduction of this Bill, but have several comments to make in relation to the provision of services to young carers. We believe that the issues we have raised need to be addressed if progress is to be made in respect of services for young carers.

1. This Bill is not resource neutral and must be backed by adequate finance. There needs to be ring-fenced budgets available to meet the needs of young carers. This applies to those aged 16 and over who would be entitled to an assessment under this proposed Bill and also to young carers who are assessed as children in need under The Children (NI) Order1995.

2. The Explanatory Document makes it clear that 16 and 17 year olds will be entitled to request a carer's assessment and to receive direct payments. This is welcomed and hopefully will lead to more flexibility and choice for young people.

However, in relation to direct payments for services, there are child protection issues, which need to be addressed in relation to vetting of services purchased by young people. The Care Standards Act 2000, which is not in force in N Ireland, enables a person who is considering employing an individual to care for their child, where that care is funded by a direct payment to ask the local authority to carry out checks under the Protection Of Children Act. It is important that such checks are incorporated into Guidance here.

In relation to direct payments we believe that it would be extremely important for young carers to be able to access a proper support mechanism to manage these payments and to help negotiate terms etc.

Provision must always safeguard and promote the best interests of children. We note from the Policy Guidance issued in England by The Department of Health that direct payments for people with parental responsibility for children with a disability will be provided within the framework of Part 111 of The Children Act 1989. Cross-reference is persistently made to The Framework For The Assessment of Children In Need and their Families. This is a matter, which we have addressed below.

In terms of the purchase of residential accommodation, we note that this is again linked to the Arrangement Of Placement of Children Regulations and clarification is sought in relation to the proposals in this jurisdiction in this regard, which would also have to address whether such accommodation falls within the LAC procedures or not.

3. The Bill only provides for a power to be given to Social Services to provide services. We would recommend that there should be a duty to provide services or direct payments to purchase services in accordance with the need defined in the assessment.

4. There needs to be clarification in respect of the responsibility for carrying out assessments. In the case of 16 and 17 year olds will this be children's or adult's services? The DH Guidance suggests that 16 and 17 year olds will only rarely be assessed under these provisions and that again the assessment framework would be used under the children in need provisions of The Children Act. Will this be the position here?

5. There also needs to be clarification as to the responsibility for identifying young carers under 16 and providing for their needs. Any Guidance accompanying this legislation needs to emphasise the multidisciplinary nature of providing for the needs of young carers and should set out clear protocols between education, health and social services authorities. There needs to be flexibility in relation to providing services to younger carers.

6. Whilst we support the notion that young carers aged 16 and 17 and under 16 should be assessed as children in need pursuant to Articles 17 & 18 Children (NI) Order 1995, there are several crucial points which we believe need to be addressed in this regard.

(a) Detailed discussion needs to take place between The Elderly & Community Care Unit and the Childcare Unit about the provision for young carers under 16 and for 16 and 17-year-old carers.

(b) There needs to be guidance in respect of carrying out assessments for young carers and the responsibility for this.

(c) The relationship between the children in need provisions of The Children (NI) Order 1995 (Articles 17 & 18) and the provisions of the current Bill need to be dealt with in detail in the Bill and in the associated Guidance.

(d) Potentially in appropriate circumstances 16 and 17 year olds should be entitled to an assessment under these provisions, perhaps in conjunction with an assessment under The Children (NI) Order 1995 children in need provisions.

(e) The DH Guidance to The Carer's & Disabled Children's Act 2000 states that young carers under18 should normally be assessed under The Assessment Framework For Children In Need, but that there will be circumstances for certain 16 and 17 year olds where it will be appropriate for an assessment under the Carers and Disabled Children legislation to take place in line with the Assessment Framework Guidance.

The Assessment Framework For Children In Need has the status of Guidance in England. This Guidance has not been implemented in N Ireland.

In the absence of Guidance in relation to the assessment of children in need, we have concern that young carers will fall through a gap in legislative provision. It is essential that a fully comprehensive system to support young carers is in place. Given that the legal basis for provision of services to young carers will cross two pieces of legislation, it is essential that care is taken to ensure that Guidance makes it quite clear who is responsible to provide services and fund support for young carers.

7. We recommend that a leaflet for young carers should be produced clearly outlining how they can get help, together with a list of services available within their area.

8. The Impact Assessment does not appear to recognise the fact that public authorities must have due regard to the need to promote equality of opportunity between, inter alia, those of different ages and that age includes young as well as old.

9. The provision of services for young people who are carers is a multidisciplinary issue and consideration should be given when drawing up Guidance to look at ways in which this issue could be incorporated into, for example pastoral care policies in schools to ensure that children and young people who are carers can get access to information from pastoral care teachers about how to access services. A multi disciplinary task force should be set up to develop clear protocols between agencies so that children's rights in this area can be protected.

10. Young carers should be entitled to appoint an independent advocate on their behalf to negotiate services in the Trust area in which they reside.

11. Guidance should indicate that young people should be consulted about their views on direct payments and on the services available. They will need support and guidance in this process.

We note that extensive Policy and Practice Guidance and a Practitioner's Guide to Carers Assessments has been issued in England in conjunction with this legislation and we would welcome further discussion in relation to the drafting of Guidance in Northern Ireland. In particular we feel it is important that such Guidance is very clear about the relationship between the assessment of children in need under the Children (NI) Order 1995 and this current Bill. This will inevitably involve discussion about the status of The Framework For the Assessment Of Children In Need in N Ireland.

We would welcome a meeting with your Department to discuss issues raised in this response. We have consulted with a number of other agencies working with young carers in the preparation of this response. Many of these agencies will forward their own separate response, but the above comments have been endorsed by the agencies named in our covering letter.

3 October 2001

Thank you for the opportunity to comment on the Department's proposals on the proposed Personal Social Services Bill.

In general the Trust welcomes the proposed Bill and the strong community support which came through in the consultation phase would indicate support from carers and carers groups. The shift in policy which the Bill would herald in relation to the recognition of the role of carers and the facilitation of flexible financial support arrangements for young people, is also to be welcomed.

The Trust does however have some reservations arising from the proposed changes.

The proposal to introduce new legislation creating a statutory right for a Carers Assessment will place increased responsibility upon Trusts to complete the assessments. There is a need therefore to take on board the impact on professional staff, in the areas of assessment, responding to assessed need and monitoring of outcomes.

This proposal will also serve to raise carer expectation potentially leading to an increase in complaints and dissatisfaction. Front line workers are only too aware of the pressure that carers are under and carer's assessments are currently integrated into the overall holistic caring programme.

It is also well recognised that resources are insufficient to meet carers needs yet the demand for support and services continues to grow. The Trust would therefore not support the contention that the implementation of the Bill would be largely "cost neutral". Additional resources will be required to match increased work loads.

The power to supply services is only meaningful when the resource base is sufficient to meet the legislative requirement. Trusts could find themselves defending a series of legal cases in this regard.

Extending a direct payment system for carers would be a welcome initiative, however this would require an increase in the structures and personnel required to manage the payment. Monitoring and support arrangements must also be considered. The proposals do not offer the control assurance mechanisms required for auditing purposes.

The Trust would also have concerns around balancing the refusal of help by an individual being cared for with a requirement to complete a carer's assessment.

Extending direct payments assumes that greater choice would be available to the individual. Has the availability of choice been adequately researched? Variations in availability of alternatives do exist between Trust areas. The availability of services is dependent upon a range of variables, many of which are outside the Trust's control.

The question of Trust accountability (Best Practice/Best Care) would need to be addressed. Will Trusts be accountable for the quality of services delivered by persons employed by carers using the extended direct payments?

The uptake of direct payments has been very poor from its inception essentially because support structures need to be in place to enable users to take on responsibilities as 'employer', i.e. recruitment, selection, insurance, sickness cover etc.

The support in whatever way provided must be funded for it to be effective otherwise users run and must carry the risks if they appoint or use care workers without the appropriate training or insurance cover.

Like the direct payments proposal the introduction of a voucher system for short term breaks assumes that sufficient resources are already in the system to operate the service and that providers can respond to demand by supplying a timely respite service. Recognition must be given to the planning or allocation of this very limited facility.

The Trust has concerns around how this would actually be implemented. Who would decide there was the potential for rehabilitation and how would the programme be developed, implemented, monitored and evaluated?

The Trust would not agree that this would be cost neutral since one must take account of the professional time involved in assessing and supporting carers where requested as a statutory requirement. A statutory right will increase demand for assessment. A substantial increase in the professional staffing establishment would therefore be required to attempt to respond to the expected demand of carers assessments if established as a statutory requirement.

The number of admissions to institutional care are increasing because care in the community is not a cheap option even with carer participation/partnership. Domiciliary care packages are currently capped at the cost of a nursing home placement. This does not readily facilitate highly dependent individuals remaining at home even with substantial carer involvement.

Support to carers therefore would be an additional cost to sustain them in their care role which might enable older individuals to remain marginally longer in the community. The high level of dependence in older persons accessing Health and Social Services must be recognised and the associated cost of providing domiciliary care which already depends heavily on informal carers supporting them - an absolute necessity - inevitably has a cost impact, both in practical and professional terms.

The aim of this Bill is undoubtedly laudable, the reality however must not be overlooked. To support carers in any meaningful way requires appropriate resources without which we are raising expectations which cannot be met and creating further opportunity for challenge.

2 October 2001

The introduction of legislation, which has a positive impact in terms of reducing social exclusion and providing equality of opportunity for carers, is welcomed.

Foyle Health and Social Services Trust has had a Policy and guidance on the Carers (Recognition & Services) Act, since 1998. Last year the Direct Payments Policy was reviewed and updated to incorporate the extension of direct payments to people over the age of 65 years.

The new statutory right to a carer's assessment, referred to in the memorandum on the Proposed Bill, will provide additional definition to the work already carried out by staff in completing assessments with the person cared for and their carer(s).

Reference has been made to the point that no human rights implications have been identified in the introduction of this legislation. However, it is my view that there are implications from specifically Article 8 of the Human Rights Act.

This needs to be considered in the circumstances highlighted where the person being cared for has refused an assessment, but the carer wishes an assessment to be completed. This may leave staff in a very difficult position in regard to the Care Manager/Key Worker's relationship with the person being cared for and their human rights.

Points 9 and 12 of the memorandum refer to direct payments for "short-term voucher break schemes" and "short-term" direct payments. The complexity of general and financial accountability, which accompanies the co-ordination of direct payments, means that this type of short-term arrangements will involve considerable work for Trust Care and Finance staff. Therefore, such provision will have cost implications unless Departmental guidance can be offered in facilitating these types of arrangements.

Lastly, point 16 acknowledges the overwhelming anticipation of raised expectation by Service Users and their Carers as a consequence of the introduction of this legislation. The Trust is struggling to manage Domiciliary Care currently. Over 83 people in the Older People's Programme alone are on a waiting list for services.

Unmet need has steadily increased. Our staff work extremely hard to co-ordinate the best possible care provision, to assist people being cared for and their carers against a background of limited resources.

The Trust is committed to working to enhance the quality of life for carers.

1 October 2001

In relation to the new proposals being developed under the Personal Social Services Bill I would make the following comments.

(a) The first proposal to make a statutory right for a carer to receive assessment in principle has already been in place since April 1996. However, it is important that this statutory right to a carers assessment does not extend to a requirement on our Trust to provide services to a carer whenever a client refuses our assistance. This would be impractical.

(b) The proposal to extend the power to make direct payments to carers for the services that meet their assessed need and to people with parental responsibility for disabled children and 16 & 17 year olds is in keeping with our responsibilities under the Human Rights and Equality Legislation.

(c) However, the extension of direct payments to carers must be seen in the context of our ability to provide the service in the first place. For example, it would be impractical to provide direct payment to parents of disabled children at this point in time as we are not resourced for extensive respite care for disabled children. Equally the concept of providing short term break vouchers must be seen within the need for additional resources.

(d) In terms of the additional requirement now for Trusts to make direct payments in cases where someone has been assessed as needing services, in effect this does not herald any new change. The Trust will still retain the caveat that the individual must satisfy the conditions of being able to manage direct payments in the first place.

(e) In terms of making direct payments for disabled parents for children's services again this will require additional resourcing as this service is currently not available.

(f) The bill amendments require that the Trust would make direct payments for short term social services care which apparently is to include rehabilitation after a stay in hospital. At this point in time the Trust does not provide rehabilitation care of this nature.

All of the above makes it difficult to understand the assertion within the amendments that 'the proposals are expected to be broadly cost neutral'.

17 October 2001

I refer to your letter of 7 September 2001 and would make the following comments.

• It is noted that the legislation is to be introduced into the Assembly before the development of a Carers' strategy.
• In instances where the client has refused an assessment or services, the proposal is to introduce a statutory right for the carer to have an assessment. Does this mean that the carer then becomes a client?
• Direct payments to carers and 16 and 17 year old disabled children is a laudable aspiration but the implications for Trusts would be significant. The addition of a voucher scheme for short term breaks also suggests that the supporting infrastructure will need to be significant.
• It would not be realistic to expect that direct payments or voucher schemes will increase flexibility of service delivery, especially at a time of lack of availability of domiciliary care workers or respite placements with the Trust. Presumably direct payment recipients will not be able to purchase Trust services and, if this is the case, the possibility of purchasing rehabilitation services, for example following a hospital stay, is unlikely.
• With regard to the comprehensive consultation process, our attempts to engage the voluntary sector in the review of Trust Direct Payments Policy and Procedures have been relatively unsuccessful and, while those who have been consulted have broadly welcomed the idea, there have been difficulties understanding the practicalities involved.
• The belief that the proposals will be broadly cost neutral is optimistic and unrealistic. These proposals will require the setting up of infrastructures within Trusts to administer and monitor payments. Indeed the idea that an assessment of the needs of carers and the services to be provided saving money in the long run are unproven and untested.
• The proposed bill does not make any difference to the provision of support services to those clients or carers who receive direct payments. Experience to date shows that the uptake in direct payments is minimal and that it is essential that an independent living support group would be funded to support carers.
• It has been suggested that, if we want to encourage carers to continue caring, a simple solution would be to substantially increase Invalid Care Allowance, enable carers to take career breaks without affecting pension rights and require employers to adopt flexible approaches to people with caring duties.

I apologise for the delay in forwarding this response but hope these comments are helpful.

Mencap appreciates the opportunity to comment on the proposed Personal Social Services (Amendment) Bill.

Mencap welcomes the decision to expand the direct payments scheme, and also to provide statutory carers' assessments, however, we would like to raise the following concerns:

• As detailed in our response to the consultation document, we feel that only by imposing a duty to provide services assessed in carers' assessments can any real change be made.
• Carers should be offered an assessment of their needs, rather than having to ask. Efforts should be made to ensure carers are aware of their right to an assessment.
• Point 15 of the memorandum could appear to differ from Section 3 of the original consultation document. Will a carers' assessment become a statutory right only where the person cared for has refused an assessment?

For further information on any of the points raised, do not hesitate to contact us on 028 9069 1351.

23 October 2001

Please find listed below comments on the Department's proposals in respect of above mentioned Bill:-

1. Direct payments can be made to parents for children's services. Should this be extended to Dementia services where carers could purchase services on behalf of cognitively impaired clients?

2. I do not think this Trust is ready for extension of the scheme for short-term interventions. The supportive input required from Social Workers is considerable over the initial stages of any scheme. Also, the nature of a "Rehab" package requires frequent tuning and progressive reductions in order to avoid undermining motivation.

3. I disagree that the proposals will be cost-neutral. The implementation will require a significant additional investment of professional social work time, especially in the Elderly Programme of Care where this is a scarcer resource.

I hope you find these comments of some help.

23 October 2001

Please find listed below comments on the Department's proposals in respect of above mentioned Bill:-

1. Direct payments can be made to parents for children's services. Should this be extended to Dementia services where carers could purchase services on behalf of cognitively impaired clients?

2. I do not think this Trust is ready for extension of the scheme for short-term interventions. The supportive input required from Social Workers is considerable over the initial stages of any scheme. Also, the nature of a "Rehab" package requires frequent tuning and progressive reductions in order to avoid undermining motivation.

3. I disagree that the proposals will be cost-neutral. The implementation will require a significant additional investment of professional social work time, especially in the Elderly Programme of Care where this is a scarcer resource.

I hope you find these comments of some help.

20 September 2001

This Council endorses the recognition of the vital role of carers in supporting people at home and awaits the proposals for a Carer's Strategy.

The Council welcomes the proposals to give Trusts the power to supply services to carers and the statutory right to a carer's assessment. At present, while the Trusts do not have such power, the onus is on the carer to request the assessment and the Council feels that awareness of this would not be high among carers.

With regard to Direct Payments, experience has shown a cautious approach by Trusts and limited uptake as a result. The individual taking on the role of employer needs support and encouragement.

The short-term break voucher scheme appears a good idea but there is insufficient detail to provide further comment on this.

Direct payments on a short-term basis is supported and will need a speedy process for assessment and decision to avoid delay in its implementation.

If as stated the proposals are expected to be broadly cost neutral then the cost of administering the assessment process must be met within existing resources. As existing resources do not meet the identified need then it must be assumed, in the current situation, that waiting lists will grow for those afforded lower priority status.

I hope the above comments are helpful.

20 September 2001

This Council endorses the recognition of the vital role of carers in supporting people at home and awaits the proposals for a Carer's Strategy.

The Council welcomes the proposals to give Trusts the power to supply services to carers and the statutory right to a carer's assessment. At present, while the Trusts do not have such power, the onus is on the carer to request the assessment and the Council feels that awareness of this would not be high among carers.

With regard to Direct Payments, experience has shown a cautious approach by Trusts and limited uptake as a result. The individual taking on the role of employer needs support and encouragement.

The short-term break voucher scheme appears a good idea but there is insufficient detail to provide further comment on this.

Direct payments on a short-term basis is supported and will need a speedy process for assessment and decision to avoid delay in its implementation.

If as stated the proposals are expected to be broadly cost neutral then the cost of administering the assessment process must be met within existing resources. As existing resources do not meet the identified need then it must be assumed, in the current situation, that waiting lists will grow for those afforded lower priority status.

I hope the above comments are helpful.

27 September 2001

The Trust welcomes the development of a Carers' Strategy and would wish to respond to proposals during the consultation process. The Trust also welcomes the introduction of this new legislation which focuses attention on carers as opposed to the recipients of service.

The Carers' (Recognition and Services) Act 1995 while not legally binding in Northern Ireland did enable carers to request an assessment of their needs. It did not, however, give Trusts the power to provide services to carers and this was a major flaw in the policy in Northern Ireland. Carers have also had a right to separate assessment under Section 8 of the Disabled Persons' Act 1989. It should be noted that the uptake of requests for assessments has been extremely low.

Carers will now have a statutory right to assessment and this is a welcome development. It gives carers similar rights to clients even when the person being cared for is not in agreement. The legislation also gives Trusts the power to supply services directly to carers. This is an entitlement which is overdue and mirrors the entitlement of clients to direct payments. The inclusion of categories of carers such as:

• 16 and 17 year olds
• parents of children with a disability and
• 16 and 17 year old disabled children

will give greater flexibility in the Scheme.

While all of these developments will enhance the role of carers it should be noted that current practice ensures the involvement of carers at all times. Carers' views and abilities to care form an important part of all assessments in social care and when service is provided it is done so in agreement with the client and carers.

The proposal to give Trusts the power to run short-term break voucher schemes will need to be explored in more detail and due to pressures in the social care market, may mean a limited choice for carers/clients.

It is noted that this legislation enables Trusts to have the power to supply services and not the duty to supply services. The latter, if it were legislated, would have serious financial consequences for Trusts and resources within the Health and Personal Social Services generally. Trusts should continue to retain the flexibility of prioritising resources and targetting those most in need.

The proposals in this Bill are to be commended and will help to enhance the role of carers in Northern Ireland.

For the first time, new categories of carers have been included and the introduction of a statutory right to assessment, direct payments and short-term break voucher schemes will allow more flexibility and choice of service.

Trusts may need to review the impact of this legislation if there follows an increase in demand for assessment and subsequent service provision.

1 October 2001

Thank you for inviting comments on the Proposed Personal Social Services (Amendment) Bill.

Praxis welcomes the recognition by Government of the work that is carried out by informal carers, without whom the needs of many vulnerable adults and children would not be met.

The inclusion of a statutory right to a carers assessment is welcome, as is the power of the Trusts to make direct payments to carers for services to meet their needs.

My colleagues and I would raise some concern at Paragraph 8, where there appears to be some blurring of age bands between this proposed legislation and the Children's Order, which indicates a child ceases to be a child at 18. This legislation is suggesting that 16 or 17 year olds can make important decisions about their own, and those they care for, futures and we would just wish to raise awareness of the possibilities of conflict between one piece of legislation and another.

Paragraph 9 will not be possible without an extension and increase of available services.

Generally we would support the views expressed in the document, but would emphasise that effective implementation of direct payments must be fully resourced. It is unrealistic to consider a "cost neutral" situation as provision of services and the monitoring of direct payments will have costs associated with them.

We would also urge that direct payments are made simpler to administer and people are made fully aware of the opportunities and choice available to them.

27 September 2001

With a membership of over a third of a million, the RCN is the largest professional association and union of nursing staff and students in the UK. As such, it is an influential voice for nursing at home and abroad. The RCN promotes nursing interests on a wide range of issues by working closely with the Government, parliament, unions, professional bodies and voluntary organisations.

The RCN campaigns on behalf of its members and the people they care for, and is a leading player in the development of nursing policy and practice, and standards of care. It provides a comprehensive range of services and benefits for its members, including: advice and support on a range of clinical and employment issues; the foremost nursing library in Europe; and RCN Direct, the 24 hour telephone information and advice service for members. The RCN also provides continuing professional development opportunities through its distance learning and short course programme, and promotes research, quality and practice development through the RCN Institute.

The Royal College of Nursing, Northern Ireland Board, welcomes the opportunity to comment on this document. The document is well structured and respects all current legislation in its development. Anticipation of what they may present as difficulties has been addressed within the initial consultations, options received, respect given to impact assessment, human rights and other relevant issues as identified in this document.

Point 2 - Formal acknowledgement of the role of the carer is essential to offering a true affirmation of their valuable carer commitment that is a resource to statutory services.

Point 3 - I welcome the development of a carer's strategy as an essential development to respect those that are identified as carers.

Point 4 - The introduction of legislation at the Assembly is welcomed, as this shall enable the Trusts to offer support to carers to enable them to maintain their health and well being. Furthermore, with reference to point 5 (present position) shall be altered, although it may have financial resource implications that needs to be sustained to respond to future/current needs assessment.

Point 6 - This statement may require an impact assessment for resource planning and provision. As legislation without a commitment for the same to be delivered as a reality is not acceptable.

Point 7 - This statement encompasses three discreet areas that are essential to respect in relation to financial support. There may need to be a complimentary statement, which indicates timescale, and a framework how this would be achieved.

Point 9 - This is welcomed.

Point 10 - To compliment such a requirement, Trusts will need to be financially able to honour such a requirement and at present that may indeed be extremely difficult without a transparent funding system to fund this activity.

Point 11 - This is a welcomed alteration. As is comment 12. Again, I would reiterate the need for appropriate and equitable funding across the North of Ireland.

Point 13 - Good and welcomed.

Point 14 - Reflects our current limitations.

Due to the news that was released on 19 September 2001 for England, about the Carers Association identifying that 3 in every 5 people would be caring for someone with a chronic illness or disability within the next 5 years, that the benefit system is grossly mismatched. Recognition of this survey should be used within Northern Ireland to estimate the carers needs from a benefits perspective so that they can be adequately met.

Once again many thanks for the opportunity to comment on this document.

PS: I have just received the following comments from another senior nursing colleague, and member, working in the acute paediatric sector.

The Trust welcomes the underlying principles and philosophy associated with the proposed Bill. It is right that carers of sick, disabled, vulnerable and frail people will have access to assessment of need and flexible delivery of services in their own right.

We welcome the extension of Direct Payments as a service option to carers and parents of disabled children. We believe the new legislation, if properly resourced, has the potential to enable carers and parents of disabled children to have increased control of the flexibility and responsiveness of their personally designed and managed support packages.

Our welcome for the philosophy and principles of the new Bill is, however, tempered by the knowledge that additional resources must be put in place by Government to implement it comprehensively. Only in this way will be avoid the repetition of past experience where expectations have been raised by new legislation only to be dashed later when the increased resources necessary to implement it were not forthcoming. The experience of the Children Order is a case in point.

The Trust believes that it is unlikely that the proposal will be "broadly cost neutral" as the Health Committee suggest in section 16 of the consultation paper. Based on its experience with the implementation of the Direct Payments (NI) Order the Trust believes there will be associated costs with the implementation of this extension of the original Order.

We consider the Committee should carefully analyse the new Bill in terms of its resource implications and set these out clearly for all stakeholders, if we are to keep expectations in line with resource availability. The new Bill, if implemented, will have additional resource implications associated with the following which could not be met from already over stretched budgets:-

• active promotion to raise awareness of the increasing entitlements that the new legislation will underpin;
• increasing numbers of carers and disabled children requesting assessments which will require additional professional and administrative staff;
• increasing demand for practical, flexible, support services delivered on the ground to those entitled by the new legislation;
• additional staff training for sectors involved in delivering the new legislation;
• increasing service demand from people previously not in receipt of social services, ie those carers whose dependants have previously refused services for themselves and similarly parents with a disabled child who refused social service involvement.
• The need for Social Services staff to closely monitor Direct Payments usage, particularly when Direct Payments are being used to purchase alternative services for Disabled Children.
• Bridging costs to facilitate the transfer of finance out of core services, for example Day Support Services, to the recipient.

Direct Payments legislation is about helping disabled people to become more independent. Providing the legal framework to directly finance the individual does not ensure that the alternative service has been created. Likewise with the proposed extension to the Bill, Direct Payments will not become meaningful to carers and parents of Disabled Children until there is investment, at least in Bridging form, to develop further alternatives to core services.

This Trust, like many others has had real costs in the implementation of the Direct Payments Bill over the last number of years, without any recognition in funding terms. Although the uptake of Direct Payments remains low, the Trust nevertheless had to prepare and train a large number of staff and ensure an administrative system was in place to facilitate and support recipients.

This Trust welcomes opportunities to increase flexibility to carers in securing short-term breaks. We consider, however, that a voucher scheme is both demeaning and stigmatising for the potential recipient, will create a whole new administrative task and would not be welcome. We believe that what would be much more welcome are flexible budgets to facilitate direct payments in these circumstances.

• Health and Social Services Boards and Trusts will be required to make a direct payment in cases where someone who has been assessed as needing services requests a direct payment and where he or she meets the conditions for receipt of a direct payment.

As we understand it, Northern Ireland Trusts, as opposed to the rest of the UK, are already required to provide direct payments where there is an assessed need and the recipient meets the criteria.

• Health and Social Services Boards' and Trusts will be allowed to make direct payments to disabled parents for children's services.

We welcome the specific acknowledgement of the additional daily stresses and strains of the parenting role on some disabled parents. We take the view that this proposal is an appropriate response to the issues highlighted in the National Assessment of Need of Disabled Parents.

It is also an appropriate response to the findings of our own local assessment of need of the additional impact of parents on physically disabled parents, reported on some time ago.

• Direct Payments will be made available to people assessed as needing a social service even on a short-term basis, eg for rehabilitation after a stay in hospital.

It is not clear from the committee's memorandum whether this aspect of the proposed Bill is still being considered.

We acknowledge and accept the underlying principle of equal access to Direct Payments for all disabled people whether disability is experienced for short or long-term. The present arrangements whereby we impose an array of bureaucratic and other requirements on people using Direct Payments in the interests of probity and other considerations is a powerful disincentive for people taking them up for longer periods. This will be even more the case for shorter periods.

We are also concerned about the potential for confusion around the proposed "short-term" use of Direct Payments where the current statutory definition of Disability refers to a "permanent and lasting condition".

3 October 2001

Thank you for the opportunity to comment on the above. The Board's comments on the content of the Bill (formerly referred to all the carers and disabled children's bill) are attached.

In attaching these I wish to draw your attention to those matters which I previously highlighted which have not been reflected in the amended Bill. These were

1. The failure to utilise this opportunity to include the needs of young carers within the scope of the Bill. In my previous response I highlighted the tremendous pressures placed in the position of undertaking caring responsibilities within families and the damaging effect such pressures can have on the young persons health and development.

I would ask once again that consideration is given to this important issue.

2. The lack of resources to accompany the Bill. I note that it is viewed that implementation is considered to be cost neutral. I cannot accept this to be the case as inevitably there will be additional demands on staff to undertake carers assessments and promote and support direct payments. These tasks are labour intensive and as there is to be a new statutory duty to access carers needs there can be no flexibility in implementation. Furthermore, whilst there may be some long term reduction in the use of residential and nursing home beds it is difficult to see how this can be realised in the short term to meet demand or indeed transferred to meet additional staffing costs when there are existing waiting lists for such provision.

3. There is a need for guidance on the services which will be made available to disabled parents to enable them in their parenting role. Will this include services provided by other agencies eg Education or merely Health and Social Services provision?

4. The development of voucher schemes remains an issue for further consideration. Whilst it is noted that the Bill confers a power rather than a duty on the Trust to provide such schemes, user expectations will be raised in this regard. In my view such schemes will require additional administration systems to be in place and are likely to incur a cost to the Trust in requiring additional staff.

I hope that my comments will be helpful to the Health and Social Services and Personal Services committees in consideration of the Bill.

The Carer's and Disabled Children's Act was introduced in England in 2000 and has been generally welcomed by carers. A number of carer organisations have identified the benefits in terms of their recognition.

The proposal to enshrine carers rights in legislation is welcomed by the Southern Health and Social Services Board as part of the development of an overall Carers Strategy. The extension of the power of Boards and Trusts to make direct payments to carers is also welcomed. The issuing of vouchers to carers in respect of short term respite breaks is something which requires further consideration.

Concerns do exist, however, about the potential demands on Board and Trust staff to meet the requirements of the Bill within budgets that are already under extreme pressure. The introduction of the legislation in England was not supported by additional funding to support its implementation. If this remains the position in Northern Ireland then there is a danger that the proposed Bill merely gives due recognition to carers but in effect make them very little better off.

The report notes that there is an estimated 250,000 carers in Northern Ireland and that 18% of households contain a carer. It should also be noted that an increasing percentage of carers are themselves elderly.

The Southern Health and Social Services Board acknowledges and values the contribution carers make to the sustainability of caring for people in the community. The development of a carers strategy is therefore welcomed to ensure that carers are receiving appropriate support in their caring role.

Although currently Health and Social Services Boards and Trusts are required to assess the needs of carers on request, the Southern Board experience is that few requests are received. This may be explained by the fact that Trusts do take into account the carers ability to provide care in the assessment of needs of the service user.

This proposal is generally welcomed by the Board. The provision of services to carers will no doubt enable them to continue in their caring role for longer and enhance the quality of life for both the carer and user.

However, the additional costs of increased numbers of assessments and increased service provision is likely to be considerable, taking account of the Department's estimated number of carers in Northern Ireland. This is at a time when Board and Trust budgets are already overstretched in meeting the demands for community care.

The Board is concerned that without additional resources to support the proposed legislation; Trusts will be unable to meet carers expectations.

The needs of young carers are being assessed at present by the Southern Area Children's Services Planning process, the statutory multi-agency strategic planning process led by the SHSSB for services for vulnerable children and young people.

It is of great concern to those working on the issue within the Children's Services Planning process that these proposals miss the opportunity of addressing the needs of young carers.

Young carers are defined as:-

• Children and young people, aged up to 18 years, who have a substantive caring role for a member of their family; and
• Children and young people aged up to 18 years, whose health or development is affected due to caring responsibilities.

There is a wealth of research, which can be made available to the consultation process if required, which demonstrates that caring responsibilities in the family for young people can be damaging to their health, development and social inclusion. Such research also provides information on the very young age at which some children have heavy responsibilities in the home, for the care of parents, siblings or other family members who may be disabled or have mental health problems or substance abuse problems.

There is no mention of young carers in the paragraph on the strategy. It is the view of the SHSSB that the needs of young carers as defined above should be included in this strategy.

In the general sections on the power of HSS Boards to provide services to carers there is no mention of young carers. The needs assessment which has been carried out in the Southern Area Children's Services Planning process, and other similar processes, has demonstrated that young carers require services to avoid damage to their own health and development and to enable them to live socially included lives.

Such services include specialist provision such as young carers support groups, which address issues of exclusion, and ensuring that young carers are supported to take advantage of mainstream services for children and young people, such as play and youth provision. Young carers require respite care to free them to take advantage of mainstream services for children and young people, as well as encouragement and enabling to access such services.

Identification and assessment of the needs of young carers so that support can be offered are required, both by agencies and professionals working with the person in the family being cared for by the young carer, and those working with the young carer themselves.

The issue of resources which would accompany these provisions is a major one. The needs of young carers have historically been neglected and there are very few existing services for this group, and those that exist currently are provided by the voluntary sector with short term funding. Therefore, the base from which we are starting with these services is very low, so that considerable resources will be required to meet the identified needs of young carers.

The extension of direct payments to meet the needs of carers is welcomed as traditionally Boards and Trusts have been unable to provide this service. The requirement for Boards/Trusts to make direct payments can only encourage and facilitate uptake. However, this has the capacity to place Trusts in a vulnerable position in relation to their capacity to respond. As a minimum the Board recommends that 'start up' money is made available whilst systems within Trusts are adapting to facilitate greater uptake.

Users and carers need assistance in taking up direct payments, in understanding finance and employment requirements and possibly in establishing a micro board.

It is unlikely that Trusts have the capacity to continue to provide this service if numbers increase significantly.

It is therefore recommended that the Department considers funding a secondary agency to develop expertise in this area and provide such support.

The proposal to extend the direct payments to 16 and 17 year-old carers is welcomed by the SHSSB.

The proposal to allow direct payments to disabled parents to help with their parenting role is also welcomed by the SHSSB, as this will enable some needs of young carers to be met. Clear direction on the nature of the children's services covered by this part of the proposed changes would need to address the wide range of young carers needs. For example, would this provision extend to services other than social services such as education and leisure?

In addition, there would be concern that the definition of disability would need to be wide enough to benefit the wide range of needs addressed by young carers. In addition, young carers care for people in the family other than their parents and other than for people who are disabled, for example those with mental health and substance abuse problems.

The opportunity to offer greater flexibility in respect of short term breaks is also welcomed.

The short term break voucher scheme, addressing, as it does, the need for respite, could be adapted for use by young carers, appropriately for the age of the young carer and their needs.

However, the concept of a voucher scheme needs further consideration. It is difficult to see the value of such a scheme where a direct payment may be made. Such a scheme requires a separate administration system to be established and on the surface would appear to be less empowering than a direct payment.

The Board would require more detail to be assured of the value of such a scheme.

The proposals, as they stand, impact differentially on the ground of age, as they will increase the likelihood of older carers needs being met, without addressing the needs of young carers, apart from the direct payments to 16 and 17 year old young carers.

As mentioned earlier, there is a substantial body of research evidence detailing the needs of young carers, which has not been mentioned in the Equality Impact Assessment.

Therefore, it is clear that these proposals run counter to Section 75 of the Northern Ireland Act 1998 on the ground of age.

Overall, the Board recommends that clear guidance on the extension of direct payments is issued by the Department, including further consideration of the criteria for acceptance on the scheme.

1. The legislation should be supported by adequate funding to ensure its implementation and to meet the expectations of carers.

2. As a minimum 'start up' money should be made available to increase Trusts' capacity to respond to increased uptake of direct payments.

3. The Department should consider funding a secondary agency to develop a body of expertise and to support people on direct payments.

4. The proposals should extend to young carers as defined as:

• Children and young people, aged up to 18 years, who have a substantive caring role for a member of their family; and
• Children and young people aged up to 18 years, whose health or development is affected due to caring responsibilities.

5. The Department should issue guidance on the range of services available to disabled parents to support them in their parenting role.

6. Detailed information on the operation of a voucher scheme should be provided and consideration given to extend the scheme to young carers.

7. The Department should issue clear guidance on the extension to the direct payments scheme including further consideration of the criteria for acceptance.

3 October 2001

On behalf of Sperrin Lakeland Health & Social Services Trust I can state that we welcome the general thrust of the proposed amendment. The Trust acknowledges that the vast majority of informal caring in our community is done by the immediate family and other relatives and we are certainly in favour of any measures which seek to recognise and address the burden which such carers carry. However we are particularly concerned about the resource issues associated with these measures. This is especially the case when there appears to be no proposals to allocate resources to give practical expression to these measures.

In recent years this Trust has faced unprecedented demand for the type of services which support carers, such as home care and respite services. The budget we have has not kept pace with the demand from recipients of the service. The position at the end of June 2001 is that the Trust has accumulated unmet need to the value of £0.7m for elderly services alone. This situation is further exacerbated by the fact that we are currently facing substantial financial difficulties and we are not funded to take on the financial implications of independent assessments for carers regardless of how much we welcome the idea.

As I understand the proposal it seeks to establish a new statutory right to a carers assessment, which in itself will have resource implications, without imposing a duty to provide the service because this would have major resource implications. The Trust accepts this would not be practical but therefore believes that the introduction of the legislation will give rise the unrealistic expectations on the part of carers which ultimately may not be realised. This is grossly unfair because this group of people are often advocates for their relatives and already face great disappointment when there is insufficient resources to ensure adequate levels of care for their relatives who are in receipt of our services.

In respect of changes to the Direct Payments Scheme, the Trust also believes that the aspirations of the legislation would be much more meaningful if the resources were provided to fully implement the proposals. Direct payments have to be arranged and monitored and this entails additional work by administrative and professional staff. This does not appear to be acknowledged in your paper.

The Trust is frankly bemused at the assertion in the paper accompanying your letter that the proposals are cost neutral. Our experience is that successful services e.g. domiciliary care, introduced and developed since the introduction of community care in 1993 have generated their own demand as many carers who previously did not seek help from Trust make genuine demands on our services. In addition the expectations of the services that should be provided have increased beyond that level we can realistically provide. Indeed increasingly carers are and will expect services that are in excess of the cost of residential and nursing home care and this will obviously raise questions about achieving a balance between effective and efficient use of public funds and the needs of carers. This is a crucial concern in the many cases where the needs of the service user and carer are difficult to divorce e.g. evenings and night services.

The Trust has reservations about the impact of the Bill on social exclusion and equality in that the legislation will raise expectations but without resources the services will not be delivered. Thus awareness will be heightened on this issue and this will lead to an increase in expensive legal challenges to Trusts. Therefore whilst we welcome the direction proposed by the legislation the Trust has serious concerns as to whether it should be introduced without the commitment of funds to implement the required services.

I hope this information is of assistance to you.

10 October 2001

I refer to your correspondence of 7 September 2001 in connection with the above, and as requested I am providing the Trust's response.

Generally the proposals are seen as being very positive and would be most welcome. The extension of the Direct Payments Legislation and the voucher schemes will offer more choice and flexibility. Given the growing number of young people shouldering enormous responsibility, with no time being allowed to pursue age appropriate activities for their own growth is most welcomed and also the awards to parents of disabled children.

Two areas of concern however relate to providing rehabilitation and "cost implications". The concerns about providing rehabilitation surround the potential tension and conflicts of interest between Independent Sector Service Providers, clients, carers and Trust staff. The Trust have a clear interest and obligation to ensure the client is encouraged and enabled to attain maximum level of functioning within the shortest period of rehabilitation. Other parties to the arrangement may have less clear cut priorities, and I would therefore worry that the Trust's involvement would be relegated to arms-length in this process.

The area of most major concern is the comment on "cost implications". It appears to me this is based on the hope that increased support for carers will prevent admission to expensive Residential or Nursing Home accommodation and therefore "should save money in the long-term". This appears to recognise that money will not be saved in the short term and therefore increase in support for carers will incur additional expenditure. There are also additional transactional/administration costs in terms of assessment, processing and monitoring.

Therefore, to implement this legislation effectively, it will either have to be on the back of additional revenue, or as a result of directing revenue from elsewhere within the system to fund it.

May I suggest caution is exercised as regards the latter part of Point 16, i.e, "the collapse of informal caring arrangements can result in admission to Residential or Nursing Home Care which will be more expensive in the longer term". This may be true for some groups of clients, however the average net cost of a domiciliary care package for clients with most complex needs is higher than the net cost of Residential Care and at least equal to, and in some cases in excess of the cost of a Nursing Home placement. I think it is somewhat simplistic therefore to regard institutional care as inherently more expensive.

I trust these comments will be of some assistance to the Committee and apologise for the slight delay in forwarding this response, but I was keen to have an input from all my Managers.

4 October 2001

The Western Health and Social Services Board welcomes the opportunity to respond to proposals in respect of the above legislation.

At the outset let me say that the Board recognises the tremendous contribution of carers and welcomes the Executive's plans to develop a Carers' Strategy. The Board also supports the proposal to give Trusts the power to supply services to carers and to assess their needs independent of the person cared for.

The Board views positively the concept of direct payments to carers (including younger carers) and disabled people to purchase services to meet their own needs. The Board accepts that these measures would increase a sense of value both tangibly and psychologically, and in effect recognise explicitly the importance of independence and self-determination amongst disabled people. The extension of the direct payments scheme to parents of disabled children would also recognise the need to support parents who are the mainstay for the care of children at home.

However, this Board has major reservations about the introduction of further unfunded HSS Legislation. The proposed Bill will create new statutory rights for carers and will add a significant additional bureaucracy associated with Direct Payments that cannot be absorbed within existing resources that are already overstretched. It would be our fear that if this proposed Bill is introduced without adequate funding the implementation will only be possible by generating the resources through Service cuts elsewhere. One client's choice (Direct Payments) may be at the expense of denying a Service to others.

The Board sees advantages in creating a flexible scheme for short-term breaks for those receiving care, though it would be helpful to have more detail as to the manner in which the proposed voucher scheme outlined in the Paper would operate.

Whilst accepting the benefits of direct payments on a short-term basis (for example in cases of rehabilitation), it is important to consider the practicality of establishing tailor made systems for relatively short periods of time: depending on the complexity of the arrangements.

As indicated earlier, the Board cannot agree with the view that the proposals are cost neutral. The additional administration needed to manage this system will be a drain on existing service resources. Unless these proposals are fully costed and funded they could only be introduced by cutting directly provided services. Also, in spite of an extensive promotional initiative in advance of the introduction of Direct Payments the take up in our Boards Area has been very low; 4 clients. It may therefore be difficult to further extend Direct Payments without a significant investment in promotional initiatives.

I hope this is helpful.

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