Scottish Government

Module Six: Carers Issues and Legislation Training

workbook

Contents

Programme
Quiz: Questions
Handout: Content of the new carers legislation
Handout: Implications of the new carers'
legislation for practitioners
Exercise instructions: Assessing carers'
needs in practice
Case Scenario 1 Mary Harris
Case Scenario 1 Mary Harris Commentary
Case Scenario 2 Robert Anderson
Case Scenario 2 Robert Anderson Commentary
Exercise instructions: Young Carers Video*
Exercise instructions: Minority Ethnic
Carers - The Rabanni Family
The Rabanni Family Commentary
Quiz: Answers
Course information leaflet

This training has been developed by Renfrewshire Social Work Department and Carer's Group, and delivered in their local area.

* "Who Cares" Alpha Films Unit, 12 Gower Street, Ipswich, IP2 8EX. Telephone: 01473 683 068

Participants' Programme

In the following pages references to the Guidance on sections 8-12 of the Community Care & Health Act 2002 are noted beneath each relevant paragraph in bold.

This document should be used in conjunction with the Guidance.

Content of the new carers legislation

The Community Care and Health (Scotland) Act 2002 strengthens carers' rights by placing new responsibilities on local authorities and health boards. Local authorities already have duties to help and support carers under the Social Work (Scotland) Act 1968 (as amended by the Carers (Recognition and Services) Act 1995 and the Children (Scotland) Act 1995. Sections 8-11 of the 2002 Act extend these statutory obligations to support carers by making further amendments to existing legislation. Section 12 of the 2002 Act enables Ministers to require the NHS to develop strategies for informing carers of their entitlement to assessment.

The Scottish Executive has produced guidance for professionals and managers in local authorities, NHS and other statutory agencies involved in supporting carers on the effective implementation of the provisions of the 2002 Act which affect unpaid or informal carers (Part 1, sections 8-12 of the Community Care and Health (Scotland) Act 2002. Printed copies of this document, ' CARERS: Community Care and Health (Scotland) Act 2002; Guidance on Sections 8-12', Scottish Executive Circular CCD 2/2003, March 2003, are available and it can also be accessed on the Scottish Executive website at www.scotland.gov.uk/Publications/2003/03.

Practitioners should familiarise themselves with the relevant provisions of the Act and the content of the Guidance document. The following provides a brief summary of the main aspects of the new legislation.

The 'new' carers legislation came into effect on 1 September 2002. It was "piggybacked" onto the legislation (Community Care and Health (Scotland) Act 2002) that brought into effect Free Personal and Nursing Care and laid some legislative foundations around the Joint Future agenda. Sections 8 to 12 of the 2002 Act pertain directly to new rights for carers and corresponding new responsibilities for local authorities and health boards.

Key Principles

The fundamental principle underlying the new legislative provisions is that local authorities, the NHS and other support agencies should recognise and treat carers as key partners in providing care. 3.1.1

This means that they should:

• Recognise and draw on the knowledge and expertise carers have about the person they care for, to ensure that the cared-for person receives services that are right for their needs 3.1.1
• Support carers to allow them to continue to care as much and as long as they wish and feel able 3.2.1
• View supporting carers as providing resources to enable the carer to sustain their contribution to the care package, rather than treating carers as people with additional needs of their own (except where carers have needs that are not directly related to their caring role) 3.2.2
• Be flexible and imaginative in the ways they support carers 3.2.3

The Guidance emphasises that good outcomes for carers will be achieved when:

• The carer is able to cope better with their caring role
• The carer gets a regular break from caring
• The carer is better informed and more knowledgeable about their caring role and the needs of the person they care for
• The carer feels valued, supported and listened to.

Sections 8 to 12 describe 4 main provisions as follows:

• Assessment of ability to provide care; this provides the right for a carer (whether or not the carer is a child) to request a local authority ( LA) to provide a carer's assessment. This also applies to parent/guardian carers of a child with a disability. In short, this provision gives a right to a carer's assessment for all eligible carers, including young carers (under 16), at any time and whether or not the cared for person has had or is having a Community Care or Single Shared Assessment.
• A carers assessment can either be separate to the assessment of the cared for person or done as part of an assessment on the cared for person. The main thing is that carers are asked key questions about their support needs as a carer. The areas that should be covered in a carers assessment and best practice on assessment approach are covered in Scottish Executive Community Care Circular CCD2/2003. In undertaking a carers assessment the lead assessor must take into account the views of the carer, "in so far as it is reasonable and practicable to do so". This also applies to parent/guardian carers of disabled children and young carers. In short, LAs are to consider carers as, and treat them as, key partners in providing care. The emphasis of the assessment is to agree proactive interventions that help support the caring role and a carers ability to care. 3.4, 6.2.1, 6.3, 8.1, 9.1

• Duty of a LA to provide information to a carer; where it appears to LA staff in their day to day duties that a person is a carer, they must notify that person that they may have a right to a Carer's Assessment. This also applies to carers of a child with a disability and young carers. 5.1.1, 5.1.2

• Matters to be taken into account in assessment of needs of cared for person; in undertaking an assessment of a cared for person the LA must take into account the views of the carer, "in so far as it is reasonable and practicable to do so". This also applies to carers of a child with a disability and young carers.In short, LAs are to consider carers as, and treat them as, key partners in providing care. 3.1.1, 7, 8.2.1

• Carer Information Strategies; this provides a power to the Scottish Executive ( SE) to require NHS Boards to prepare and submit to Ministers an NHS Carer Information Strategy. These strategy will have to indicate howNHS staff will inform carers that they have the rights listed above, in line with the similar requirement placed on LAs, and that information on these rights is available free of charge. Strategies are to be developed in partnership with: LAs, carers and other stakeholders.

For the purpose of this Act, "carers" are defined as people who support or look after family, partners or friends in need of help because they are ill (including mental ill-health, alcohol/substance misuse), elderly or frail or have a disability. They are not waged for providing this care and may or may not live together.

The new rights introduced by this Act apply to any carer who provides or intends to provide "a substantial amount of care on a regular basis". 3.5

To assist local authorities and partner agencies with the implementation of the carer elements of the 2002 Act, the Scottish Executive published extensive Guidance on Sections 8-12 of the Act, entitled CARERS: Community Care and Health (Scotland) Act 2002, Circular CCD2/2003. This guidance is essential reading for practitioners and front line staff and should guide the interpretation and implementation of the Act across all local and health authorities.

Relationship to existing legislation:

LAs already have duties to help and support carers under the Social Work (Scotland) Act 1968 (as amended by the Carers (Recognition and Services) Act 1995). The provisions detailed above build on and enhance these duties, by making further amendments to the 1968 Act. 4.2.1

The Children (Scotland) Act 1995 gives LAs duties to promote the welfare of children in need. Section 23 of that Act gives authorities a duty to assess the needs of any child affected by disability (either their own, or that of another person in the family). Section 24 of the 1995 Act already gives authorities a duty to assess "substantial and regular" carers of a child with disabilities in order to determine the carer's ability to continue to provide that care. All of these provisions remain in force and the 2002 Act builds on these duties. 4.2.2

Section 8 of the Disabled Persons (Services, Consultation and Representation) Act 1986 requires LAs to take into account the ability of a carer who provides "a substantial amount of care on a regular basis" to continue providing care, when assessing what services to provide to a person with disabilities living at home. This obligation on LAs does not apply where the LA is assessing a carer under the 1968 or 1995 Acts, as amended by the 2002 Act. 4.2.3

Implications of the new carers' legislation for practitioners:

1) If someone requests a carers assessment, the worker need only establish whether or not that the person provides "substantial and regular care". 3.5

If they do so, the person's request for a carers assessment must be processed. There is no precise description of what constitutes "regular and substantial" in the legislation, but Scottish Executive Circular CCD 2/2003 - jointly developed with carer organisations and local and health authorities - provides detailed and extensive guidance on the interpretation and implementation of the Act, including an authoritative interpretation of the term "substantial and regular". Therefore it is for LAs and by extension front line staff, in conjunction with other agencies, to interpret these terms in individual cases, with reference to the guidance.

With reference to CCD2/2003, appropriate individual decisions about whether a carer's particular circumstances make them eligible for a carer's assessment can be made. It is worth bearing in mind that, for example, only 5 hours care a week may be substantial if the care concerned is of an onerous or significant kind or the carer's own health is poor.

2) If a worker is undertaking a Single Shared Assessment with a cared for person, they need to inform any carers providing or intending to provide substantial and regular care of their right to an assessment. There may be more than one carer. Priority in terms of assessment will usually go to the main carer assuming it is possible to determine who that is. 5.2

3) In the event of conflict between, for example, a young carer and the cared for person, LAs should consider whether there is a need to support a young carer who is providing "substantial and regular" care even when the cared for person does not wish to have an assessment.

Authorities should make the protection of the child paramount and consider providing community care services for the cared-for person, or children's services to the child. It is very important that the young carer is enabled to express their views fully about their caring role. 6.12, 7.3, 9.7, 9.9

In the case of the young carer not wanting an assessment despite appearing to have a substantial caring role, authorities should aim to get as full a picture of their situation as possible, and consider what other alternative support could be given to the family. 9.8

4) The key partners principle means that involvement of carers in care planning for the cared for person needs to be regularly undertaken, provided it is reasonable and practicable to do so. 3.1, 7.4, 7.5

5) If the cared for person does not want an assessment of her needs this does not invalidate the right of a carer to her assessment. In short, the carer has an independent right to an assessment. This might require subsequent work with the carer and the cared for person to negotiate a care package that supports the relationship, where possible. 6.2, 7.3

Assessing carers needs in practice

In your small groups, discuss the two scenarios.

Address the questions attached to each scenario and record the main points of your discussion.

Choose a member of the group to feedback on behalf of the group.

CASE SCENARIO 1: Mary Harris

Mary was an 85 year old woman living alone in her flat in Glasgow. She was first referred to the Assessment & Response Team (Duty) early July 2000 by the Health Visitor:

Mary's husband had died 3 months earlier. Essentially Mary's husband had been the main carer. Mary had poor mobility due to osteoporosis and used a zimmer. Her husband had assisted her around the home, especially in relation to bathing and when Mary rose from bed or retired in the evening.

Mary's only daughter (Patricia Wright) lived in Paisley and was married with three children of her own. Prior to her father's death, Patricia had been a regular visitor (usually twice a week). Now, however, she was having to visit on a daily basis in order to provide much needed emotional and practical support to Mary, for example, doing her shopping and paying her bills.

However, the stress of such a commitment was spilling over into other areas of her life. Most crucially, she was now off work sick, having visited her GP, because of stress and anxiety. Indeed, she was considering giving up her work as a Senior Administrator in local government in order to devote yet more time to caring for Mary but the financial implications of doing so and the corresponding effect on her pension entitlement were a great concern.

Furthermore, she would miss her job hugely if she had to give it up. However, the stress and anxiety was always there for Patricia and was affecting her sleeping pattern as she would lie awake at night, in expectation of the regular nightly phone calls that Mary would make, due to her sense of isolation and grief over the loss of her husband. The strain of Patricia's caring role was also negatively affecting her relationships with her husband and children.

Patricia discussed matters, including concerns about herself, with Mary's Health Visitor (H.V.). The H.V. was concerned about Mary's increasing isolation: Mary lived on the 22nd floor of high-rise flats situated in a scheme on the outskirts of Glasgow. The H.V. discussed matters with Mary and it was agreed that she needed support services. The H.V. also had concerns about the impact Patricia's caring for Mary was having on Patricia's own health and her family life. With Patricia's agreement she referred her to the SWD for a Carers Assessment.

Questions;

1) Who, if anyone, in this situation has a right to an assessment and under what legislation would an assessment be carried out?

Both Mary and her daughter have a right to a Single Shared Assessment (Older People) and SSA Carers Assessment respectively. The relevant legislation is the NHS & Community Care Act 1990 for Mary and Carers Recognition and Services Act 1995 and Community Care and Health Act 2002 for Patricia.

2) What issues arise from the situation?

Mary's physical isolation, Mary's physical difficulties, effects of bereavement on both Mary and her daughter who had suddenly become the main carer, the carer's own family commitments conflicting with her caring role and working life. Different assessors for carer and cared for or the same assessor? Which team carries out the Carers Assessment - Glasgow or Paisley?

3) Describe the steps you would undertake during the process of carrying out the carers assessment.

The social worker would inform the carer of her right to an assessment and would give the carer a copy of the leaflet "A Carer's Guide to a Carer's Assessment". The sw would offer to go over the leaflet with the carer if required. Assuming that the carer wishes to go ahead with the comprehensive carers assessment, she and the sw will arrange to meet in a mutually convenient place, with a copy of the Carers Assessment being sent to the carer beforehand. The carer must be offered the opportunity to meet the assessor, without the cared for person being present.

During the assessment, the sw must attempt to find out and record whether or not the carer wishes to continue in her caring role. Once the assessment is completed, the carer must be informed of the date of review of her support plan (i.e. Carer's care plan). The carer must be given a copy of the assessment, including the support plan.

CASE SCENARIO 2: Robert Anderson

Mr Robert Anderson is a 43 year old man who was diagnosed in 1991 with Multiple Sclerosis. He suffered rapid deterioration and is now confined to a wheelchair and has limited movement of his upper limbs. He lives with his wife, Margaret Anderson, aged 40, who he recently married. They have been together for 15 years and they have a 13 year old son Patrick. He relies on Margaret who is his main carer for his personal care needs and practical needs. This is adding strain to the relationship and his partner had to give up her job to care for him. She also feels that she is stressed and tired all the time.

They now live on benefits which is also an added pressure on the relationship. Robert has mental health problems as well and has attempted suicide on a number of occasions. He is very depressed with regards to his illness and the unfairness of it all, as previously he was a very active man and an ardent football fan. This has also stopped due to limited access with his wheelchair.

He will not accept any more help than the assistance that he receives first thing in the morning to deal with his personal care and transfers from bed to wheelchair. This leaves his wife to deal with the rest of the day with regards to any toileting and personal care and other daily tasks. This again adds stress and strain to the relationship leaving his wife feeling very low.

Although she feels it is her duty to do this, she also has strong guilty feelings about being the "healthy" one and this all leads to her trying ever more exhaustedly to keep the family unit together. Although Margaret would be generally accepting of services, her husband refuses to have any more assistance than they are already receiving as he feels that this is an intrusion into their lives.

Nevertheless, Margaret's increasing levels of stress results in her contacting the Carers Centre, which she heard about through a friend, and asking them for advice about her situation. They advised that she contact the local social work Area Team to ask for an assessment of her needs. Robert was furious when he heard that someone would be visiting to assess Margaret's needs and was emphatic that Margaret was not entitled to an assessment because he, the person being cared for, didn't want any more social work or other involvement.

Questions;

1) Who, if anyone, has a right to an assessment in this situation and under what legislation would an assessment be carried out?

Robert, Margaret and Patrick are all entitled to an assessment of their needs although Robert clearly does not want one. As Robert's main carer, Margaret has an independent right to a Carers Assessment despite Robert's resistance to the same. Margaret's right to a carer's assessment dates back to the Carers (Recognition and Services) Act 1995 and her independent right to such an assessment, even if her partner resists agency involvement and even if he has not had and/or does not wish an SSA himself, arises from the Community Care and Health (Scotland) Act 2002.

This independent right stands in all cases, as long as 1) the care provided or intending to be provided is regular and substantial, 2) the person being cared for is eligible for community care services or in the case of a child, children's services.

As regards the child in this case i.e. Patrick, he too has a right to an assessment of his needs because he is deemed to be, under the Children (Scotland) Act 1995, a child affected by the disability of another person in their family.

2) What issues arise from the situation?

These include the cared for person's lack of co-operation, how to ensure that Margaret can see the assessor on her own, how to address the affects on the child of his father's disability (the child may even be providing some care himself such as doing the shopping on a regular basis, so there are probable young carer issues).

3) Describe the steps you would undertake during the process of carrying out this assessment.

The social worker (sw) or other assessing worker as appropriate, would inform the carer of her right to a carer's assessment and would give the carer a copy of the leaflet "A Carer's Guide to a Carer's Assessment". The assessor would offer to go over the leaflet if required. Assuming that the carer wishes to go ahead with a comprehensive SSA - Carer's Assessment, the carer and the assessor will arrange to meet in a mutually convenient place, with a copy of the Carer's Assessment pack being sent to the carer beforehand.

The carer must be offered the opportunity to meet the assessor, without the cared for person being present. During the assessment, the assessor must attempt to find out and record whether or not the carer wishes to continue in her caring role. Once the assessment is completed, the carer must be informed of the date of review of the assessment. The carer must be given a copy of the assessment.

Young Carers

1. Watch the video about young carers (17mins)

2. Go into your small groups and discuss the following:

• Your initial reactions to the video
• What could be done to support this family
• What issues should be considered when offering support
• How should young carers be identified

Record your answers on flipchart and decide how you will feed back to the rest of the group (20 mins)

Case Study: The Rabanni family

Mr Rabanni - age 52 - full-time employment - works long, unsociable hours

Mrs Rabanni - age 45 - housewife - main carer

Six children as follows; (all living at home)

Asif (m) - aged 21 - learning disabilities and physical disabilities - at home every day, after being unable to settle in day Centre

Ahmed (m) - 16 - learning disabilities - attends special needs school

Sobia (f) - 15 - assists in caring for her siblings, attendance & performance at school affected - collects Alia and brings her home from Nursery every lunchtime

Ghulam(m) - 12 - first year, secondary school- no longer able to walk Rukhsana home from school

Rukhsana(f) - 8 - primary school

Alia(f) - 4 - learning disabilities - attends special needs nursery

The family speak Punjabi at home. Mr Rabanni, Sobia, Ghulam and Rukhsana can speak English reasonably fluently. The family have not had a holiday in five years. The family are willing to engage with social work.

It is apparent that Mrs Rabanni is exhausted and stressed but she nevertheless makes it clear that she wants to continue her caring role. There is one family car which Mr Rabanni uses for his work.

1) What can be done to support this family?

2) What issues should be considered in offering this support?

1) What can be done to support this family?

Mrs Rabanni can be offered a Carers Assessment (with professional translator present plus translated leaflet about assessment sent to Mrs Rabanni beforehand).

It would not be appropriate, for example, to use Sobia as a translator.

Sobia could be offered a young carers assessment. It's likely these assessments will indicate the need for support for Mrs Rabanni to sustain her caring role and assistance to the family to reduce the impact of caring on Sobia's schooling and leisure pursuits.

Support might include Home Care in the mornings, to assist Mrs Rabanni in getting the children ready for school etc., and to ensure that Sobia is not having to miss the start of the school day because of caring responsibilities. Education Department has responsibilities in the area of ensuring that Sobia's educational needs are met.

If Asif was agreeable, referral could be made to the Carers Centre for a Befriender to take him out for a couple of hours every fortnight, on one of the two days a week that he is not at the Centre. This would give Mrs Rabanni a break. However, it would probably be necessary for respite to be arranged for Asif, to a maximum of 56 nights per year, in a specialist residential or small group living resource, in order for Mrs Rabanni to be able to properly recharge her batteries on a regular basis.

If Sobia's assessment indicated a need for information (e.g. about her siblings conditions), individual support, practical assistance and social contacts/recreation, it would be appropriate to refer her to a local Young Carers Project. The combination of the support going into the family and her own support from the Young Carers Project, should enable the twin objectives of Young Carers Assessments to be met (as set out in the S.E. Policy Guidance on Carers and the Community Care and Health (Scotland) Act 2002, CCD 2/2003). These objectives are;

a) to safeguard the interests and promote the welfare of the young carer,

b) to ensure that they are not taking on inappropriate levels or types of caring by ensuring the family has access to alternative support.

As regards Alia (4), the Health Visitor would have a key role in assessing her support needs. The local Community Learning Disability Team should also be looking to offer support to this family.

2) What issues should be considered in offering this support?

The importance of cultural awareness , for example, it is unlikely that Mrs Rabanni will wish to be interviewed by a male assessor and the Home Carers too would probably need to be female. However, this needs to be checked with Mrs Rabanni first.

It would be important that the Home Carers knew a few basic Punjabi words or terms at least. Ghulam and Rukhsana, as brother and sister of children with disabilities are regarded as "children affected by disability" and as such can be supported as "children in need" under Section 22 of the Children (Scotland) Act 1995. This is because siblings of children with disabilities frequently cannot enjoy the same social opportunities as other children.

Family may feel socially isolated where they are living.

Important that the principles of SSA are followed so as to avoid a multiple number of assessors being involved with the family. That said, if, for example, Sobia and her mother have conflicting views different assessors would have to be used for each of them.

Overall, an important issue is to ensure that agencies already involved with the family continue to discharge the tasks that are commensurate with their responsibilities. This case is not just about social work. A social worker might not even be the most appropriate professional for the key role of carrying out the assessments, co-ordinating any other contributions, and identifying the support or services needed.

Quiz: What are the facts about carers?

Answers

1. How many unpaid carers are there in Britain? b. 6 million

2. How many carers are there estimated to be in Renfrewshire? a. 21,700

3. How much do unpaid carers in Britain save the government annually? b. 57 billion

4. What ratio of adults are carers? c. 1 in 8

5. The peak age for caring is: b. 45-64

6. What proportion of carers are women? b. 60%

7. How many people have to give up their job to care? b. 500,000

8. How many people work and are carers? b. 15%

9. How many carers felt that they had no alternative to taking on their caring role? c. 80%

10. 75% of carers caring for 35+ hours per week have an annual income of less than? a. £8,000

11. The number of carers who spend 50+ hours per week caring has increased since the last census by? c. 50%

12. What proportion of carers felt their health is affected by their caring role? c. Two thirds

13. Carers who live with the person they care for were far less likely to receive visits from service providers than those who lived apart by? c. 25%

14. How many young carers are there estimated to be in Scotland? c. 16,500 census, 2001 c. 115,000 Princess Royal Trust for Carers Survey, 2004

15. By the year 2037 how many adults will be carers? c. 3:5

CARERS ISSUES AND LEGISLATION TRAINING

Carers Issues and Legislation Training

Course information leaflet

A one day course which is intended to update participants on the latest developments in legislation and national guidance relating to carers, and to introduce them to the new assessment tool for Carers' Assessments. The programme aims to encourage participants to examine the impact that being a carer has on the lives of individuals and to recognise both the difficulties they face and the benefits they gain from this role. It considers the importance of Carers Assessments to carers and looks at the particular issues that affect Young Carers and Minority Ethnic Carers.

Target group:

This is a new training course and it is important that we test the relevance of the training materials and get feedback from practitioners who will be expected to put the new assessment tool into practice immediately. These three courses are therefore aimed at practitioners who are already undertaking Carers Assessments or for whom there is a clear expectation that they will undertake these assessments following the training. Depending on demand, the training may be made available to a wider audience at a later date.

Intended learning outcomes:

Having completed this training, participants should:

• Understand why the most recent change to legislation was made
• Understand what responsibilities they have under sections 8 -12 of the Community Care and Health (Scotland) Act 2002
• Be familiar with guidance on the interpretation and implementation of the Act as published in Scottish Executive Circular CCD 2/2003
• Understand the process of undertaking a Carers Assessment
• Be able to carry out a carers assessment using the Carers Assessment pack
• Be able to identify general and specific needs of different carers

Content:

• Legislation and guidance relating to carers
• Perspectives: Carers, Workers
• Carers Assessments
• Applying the legislation in practice: case scenarios
• Young carers
• Minority ethnic carers
• Services and supports

For further information, please contact Gail Gillespie, Senior Resource Officer (Training) on 0141-848-6983, or David Milligan, Resource Officer (Planning) on 0141-842-5155.