Case Study Of Downs Syndrome

Paul Z is a 30 year old man who has a Learning Disability and Down’s syndrome. He lives at home with Mrs Z, his mother who is his main carer and 18 year old sister S who goes to Sixth Form College and hopes to go to University. Mrs Z is devoted to Paul and gave up her part time job when he left school twelve years ago to look after him full time. Mrs Z who was widowed two years ago has recently been prescribed anti-depressants by her GP as she was not sleeping well and finding life difficult to cope with.

Paul is able to complete his personal care and dresses himself appropriately, although he does sometimes need prompting or supervising depending on his mood that day. Mrs Z finds it very difficult to leave Paul at home for any length of time even though he is likely to be able to cope on his own for a few hours. She will occasionally leave him with his younger sister S but she has exams and a very full social life of her own. Neither has Mrs Z been willing to allow Paul to access community based activities, other than the Day Centre which he attends two days per week, because she fears for his safety. Paul really enjoys the Day Centre where he has been given his own shelf in the greenhouse and a patch of garden where he grows flowers and vegetables which he takes home to eat. Paul would like to increase his social activities, develop his independent living skills and have access to a bigger garden to grow more vegetables and to possible sell them.

Paul’s interests include watching films, reading comic books and playing computer games and football. He also enjoys swimming and accompanies Mrs Z when she goes. Paul is very sociable and well liked by all who meet him. Mrs Z does not drive and both she and Paul are dependent on public transport.

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Paul requires support when in the community as he could be extremely vulnerable if left on his own because of his friendly and trusting nature. Paul has a good understanding of everyday things but due to his learning disability tends to make decisions based on his every day experience and eagerness to please and may not have necessarily understood or taken into account all the information which might affect the decision. He can appear to have a better understanding of things than he has and he needs to be supported when making more complex decisions. Paul is also very difficult to understand verbally and uses his own language with a form of Makaton and picture Symbols. When he becomes anxious or worried he can be aggressive even towards those who he knows well. Also due to his poor communication skills he finds expressing himself very difficult.

3 practice related questions:

In the context of Paul’s circumstances provide a critical analysis of:

Which types of assessments would need to be implemented, how these would be most appropriately conducted and by whom

The first assessment that would need to be implemented would be an assessment of Paul’s need for community care services.

As Paul has a learning disability and Down’s syndrome, there will be assessment barriers that need to be taken account for and overcome to enable Paul to participate fully in the assessment process. In addition this will ensure that the relevant and necessary information is gathered to accurately assess Paul’s need for community care services. As described Paul has poor verbal communication skills, this could make it difficult for Paul to express himself during the assessment process. Furthermore Paul may need help in making sense of and understanding information, this would need to be addressed to maintain Paul’s full involvement and level of understanding in the assessment and for any decision. Paul’s challenging behaviour would need to be taken into account so not to cause harm to him or others.

Paul’s assessment would normally be conducted by a social worker from Paul’s local social services department (NHS Choices, 2009). The social worker would need to find ways of dealing with these potential barriers before the assessment takes place. Paul communicates using his own language; with this in mind it may be appropriate to have someone who knows Paul well to be part of the assessment so they are able to interpret the information to the assessor. Paul’s mother or sister could do this

Alternative communication-picture symbols social worker could use these/interper however Paul is eager to please so may tell interviewer/social worker what they want to hear. May be case if mum/sister is present so an independent advocate may be advisable. As Paul can get aggressive-build the relationship up before assessment.

Carer’s assessment

Mother’s own s47 assessment

The issues relating to risk, proportionate response and capacity

Risk assessment, vulnerable adult, MCA, IMCA

How you would work to promote Paul’s independence and his right to make his own choices, with whom would you cooperate to achieve this and which theoretical perspectives would inform your practice.

Person centred planning-Valuing people

Social model of disability

3 Legal Questions:

What statutory duties, if any, does the local authority have in respect of assessing and providing community care services to Paul and/or Mrs Z? Please identify the relevant legislation.

In respect of assessing Paul, the local authority under Section 47(1) of the National Health Service and Community Care Act 1990, has a duty to assess his needs and depending on the result of that assessment, will decide whether Paul’s needs call for the provision of community care services. As Brayne and Carr (2010, pp.541) states ‘there are two clear steps that are required by s.47(1)-an information gathering exercise and a decision making process’. During the decision making process, the Local Authority will follow the guidance set by the Fair Access to Care Services Guidance for Adult Social Care Needs issued by the Department of Health in the Local Authority Circular 2002 (LAC 2002 13). The eligibility criteria is based on the risk to independence caused by an individual’s presenting needs. End with saying about cc services to link to next paragraph.

Community Care services are a range of services that are generally provided by social services to enable the people who are receiving them to remain living within the community rather than moving, for example into residential care (Clements and Thompson, 2007). The main statue that directs community based services is Section 29 of the National Assistance Act 1948. This gives local authorities the power and duty to provide domiciliary care services to disabled people who fall within the definition as defined by the act and who are in need of such services. Services can be provided within the service user’s home or elsewhere, such as a day centre. As Paul has a learning disability and Down’s syndrome, he would be eligible for these services. Under s.29 of the NAA 1948, Paul could receive arrangements to support him with gaining independent living skills, services for recreational and social activities and assistance with setting up his own business so he could sell his vegetables.

Paul, under s.29 of the NAA 1948, is defined as being disabled and therefore Local Authorities have further power and duties to provide services under Section 2 of the Chronically Sick and Disabled Person’s Act 1970. This section offers a wide range of services that could be available to Paul. He could benefit from outings outside of his home, assistance with travel arrangements for such outings, practical assistance within his home and holidays.

Mrs Z is Paul’s main full time carer and so would be entitled to an assessment under Section 1 of the Carers and Disabled Children Act 2000, of her own needs in terms of her ability to provide and to continue to provide care for Paul. A carer, as described in the legislation, is an individual who provides or intends to provide a substantial amount of care on a regular basis for another individual aged 18 or over. Within s.1 of the CDCA 2000, Mrs Z, would still be eligible for an carer’s assessment even if Paul was to refuse a community care assessment himself.

The local authority involved in this case, has a statutory duty, under the Carers (Equal Opportunities) Act 2004, to inform Mrs Z of her right to an assessment and must take in to consideration whether Mrs Z works or wishes to work or would like to undertake any education, training or leisure activities. The results of Mrs Z’s assessment would be considered during the decision making process of Paul’s need for the provision of community care services.

If Paul was going to be placed in residential care what statutory duties or powers does the local authority have to place him in residential care, and what statutory duties does the local authority have in respect of the choice of accommodation. Would your answer differ if Paul lacked mental capacity to decide where he should live?

If Paul was going to be place in residential care, the local authority has a duty to provide this under Section 21 of the National Assistance Act 1948. Within this act it states that residential accommodation must be provided for persons aged eighteen or over who by reasons of age, illness, disability or any other circumstances are in need of care and attention which is not available.

Once Paul has been assessed as eligible for accommodation

As Clements and Thompson (2007, pp.222-223) states ‘the NAA 1948 (Choice of Accommodation) Directions 1992 constitute one of the few examples of genuine choice that individuals have in relation to their community care services’.

The NAA 1948 (Choice of Accommodation) Directions 1992- gives individuals genuine choice that individuals have in relation to their community care services. When they are engaged, the directions give service users a legal right to choose setting of their residential care.

Once a social services authority has assessed a person as eligible for accommodation under NAA 1948, S21, it is then obliged to make arrangements to accommodate that person in a care home of his or her choice provided that the conditions in direction 3 of the NAA 1948 (Choice of Accommodation) Directions 1992 (as amended) are satisfied.

S1(2) MCA 2005 -presumption of capacity

S2 MCA 2005 – Decision must be time and issue specific.

S4 MCA 2005 – if lacks mental capacity then a best interest decision is required

c)In the context of the case study please identify any vulnerable adults and say why and in what circumstances you consider them to be vulnerable. What assessments if any would you carry out and what measures if any would you put in place to protect them? Critically analyse which other individuals and/or agencies, if any, you would involve in the safeguarding process.

Assessment

There are a number of statutes that deal with the matter of assessment.

The overarching duty on local authorities is set out in the NHS and Community Care Act 1990.

NHS and Community Care Act 1990 Section 47(1). This imposes a duty on local authorities to carry out an assessment of need for community care services with people who appear to them to need such services and then, having regard to that assessment, decide whether those needs call for the provision by them of services.

An assessment is triggered where :

The person appears to be someone for whom community care services could be provided and

The person’s circumstances may need the provision of some community care services

There are a number of other Acts which deal with the matter of assessment:

The NHS and Community Care Act 1990 Section 47(2). If, during the Section 47(1) assessment the person is identified as being ‘disabled’ *, that person has additional rights as set out in Section 47(2). This requires local authorities to make a decision as to the services required under Section 4 of the Disabled Persons (Services and Consultation and Representation) Act 1986.

Note: * see Section 29, National Assistance Act 1948 below

Disabled Persons (Services and Consultation and Representation) Act 1986 Section 4. This imposes a duty on local authorities to decide whether the needs of a disabled person call for the provision by the Local Authority of any services in accordance with Section 2(1) of the Chronically Sick and Disabled Persons Act 1970.

National Assistance Act 1948 Section 29 (1). To qualify for services under this Section persons must be:

   ‘aged 18 or over who are blind, deaf, or dumb, or who suffer from mental disorder of any description, and other persons aged 18 or over who are substantially and permanently handicapped by illness, injury, congenital deformity or such other disabilities as may be prescribed by the Minister’.

The definition of ‘disabled person’ should be interpreted in this context to mean people over 18 years who have a permanent and substantial disability such as learning disability, physical disability, sensory impairment, mental health difficulties, chronic illness or any combination of these.

LAC(93) 10 Appendix 4 asks councils to give a wide interpretation to the term substantial to take full account of individual circumstances and a flexible interpretation to the term permanent in cases where they are uncertain of the duration of the condition. Examples include episodic or recurring illness, intermittent disability / conditions.

People who are disabled within the terms of this definition are not obliged to register with the Department, nor is access to assessment and services dependent on registration.

Chronically Sick and Disabled Persons (CSDP) Act 1970 Section 2. This places a duty on local Authorities to assess the individual needs of everyone who falls within Section 29 of the National Assistance Act 1948 above.

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Assessment of Carers

The Carers and Disabled Children Act 2000 Section 1. This section gives carers, aged 16 or over, the right to an assessment of their ability to provide care or continue to provide care:

Where they provide or intend to provide a substantial amount of care on a regular basis for another individual 18 or over

And

the local council is satisfied that the person cared for is someone for whom it may provide or arrange for the provision of community care services.

This right exists even where the person cared for has refused an assessment by the local council social services department or has refused the delivery of community care services following an assessment.

Note: The Carers and Disabled Children Act 2000 will only rarely be used by councils looking at the needs of 16 and 17 year old carers. Where it is used in these circumstances the assessment must be child centred and follow the guidance set out in the Framework for the Assessment of Children in Need and their Families (paragraphs 3.61 to 3.63.)

(Ref The Carers and Disabled Children Act 2000 policy and practice guidance).

The Carers and Disabled Children Act 2000 Section 6 . This section provides that a person with parental responsibility for a disabled child has the right to an assessment from the local authority of their ability to provide (and to continue to provide) care for the child. The local authority must take that assessment into account when deciding what services, if any, to provide under section 17 of the Children Act 1989. (Ref The Carers and Disabled Children Act 2000 policy and practice guidance).

Disabled Persons (Services Consultation and Representation) Act 1986 Section 8. Carers also have rights under this section which requires local councils to have regard to the ability of the carer to provide or continue to provide care when deciding what services to provide to the disabled person. In these circumstances the assessment of the cared for person must take account of the carer situation and record this as part of the assessment of the cared for person. This requirement exists even where the caring role is not of a regular or substantial nature.

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Mental Health Act 1983, section 117 requires a local authority jointly with the Health Authority to provide aftercare services for people leaving hospital after being compulsorily detained. It is implicit in such a duty that a process of assessment must be undertaken prior to discharge to identify needs and how they will be met.

The delivery of all mental health services is framed within the Care Programme Approach (CPA) which provides the framework for all patients, both in hospital and in the community. Among the key elements of the CPA are:

Systematic arrangements for assessing people’s health and social care needs

The formulation of a care plan which addresses those needs

The appointment of a Care Co-ordinator

Regular review of the care plan.

Other specific assessment requirements within Mental Health are determined by Sections 2, 3, 4 and 7 of the 1983 Mental Health Act. These sections require an Approved Social Worker to undertake an assessment of an individuals mental health along with key health colleagues.

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Provision of Services

Fair Access to Care Services and the Duty To Provide

Once a community care assessment is carried out, councils need to make decisions about whether to provide support or not to individuals. Fair Access to Care Services (FACS) provides councils with an eligibility framework for adult social care to identify whether or not the duty to provide services under the following legislation is triggered. (Ref. Fair Access to Care Services policy and practice guidance).

The duty on social services to provide or arrange services is triggered only for those people with eligible needs – that is needs above the threshold for services line. The national FACS policy – LAC (2002)13 – states that councils may take account of the resources available to them in deciding which needs to meet.

Needs that are identified as eligible needs and which sit within the laws relating to a duty on Social Services to provide services must be met. How those needs are met is a separate issue.

Provision of services takes place primarily under:

The National Assistance Act 1948, Section 21 and Section 29

The Chronically Sick and Disabled Persons Act 1970, Section 2

The Health Services and Public Health Act 1968, Section 45

The NHS Act 1977, Section 21

Mental Health Act 1983, Section 117

Carers and Disabled Children Act 2000

Community Care (Direct Payments) Act 1996

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Duty to arrange/provide services for people with Eligible Needs

National Assistance Act 1948 Section 21(1). Concerns the provision of residential accommodation to certain groups of people over 18 years who through age, illness, disability or any other circumstances are in need of care and attention which would otherwise be unavailable to them. The duty is owed to people ‘ordinarily resident’ in the Local Authority’s area.

National Assistance Act 1948 Section 29. The local council has a duty to exercise its powers for people ‘ordinarily resident’ in its area and must provide:

A social work advice and support service

Facilities for rehabilitation and adjustment to disability

Facilities for occupational, social, cultural and recreational activities

Chronically Sick and Disabled Person’s Act 1970 Section 1. This section imposes a duty on local authorities to provide information about relevant services.

Chronically Sick and Disabled Person’s Act 1970 Section 2 (1). This section sets out the types and range of services that local council’s should have available to meet the needs of ‘disabled people’ *. These include: provision of practical assistance in the home; provision of recreational facilities outside the home or assistance to take advantage of educational facilities; provision of assistance with works for adaptation in the home; provision of meals.

Note: * See Section 29(1) of the National Assistance Act 1948 above.

National Health Services Act 1977 Section 21. This section identifies that services can be provided in relation to expectant mothers, prevention and after care and that home help and laundry facilities are functions exercisable by social service authorities. Schedule 8 identifies the power to provide and maintain day centres or similar facilities and power to arrange services specifically for people with alcohol and drug problems. Also to provide laundry services as part of the input of home help services.

Mental Health Act 1983 Section 117(2) This section creates a joint duty on the local Health and Social services Authorities to provide after care services to various categories of people who have been detained in hospital for as long as the person needs them. Aftercare services are not defined in the Act but will include social work support in helping the ex-patient with problems of accommodation or family relationships, the provision of domiciliary services and the use of day centre and residential facilities.

Community Care (Direct Payments) 1996 Act This sets out the circumstances when direct payments should be considered. It gives local authorities the power to offer people cash payments as an alternative to arranging social care services to meet their assessed, eligible needs. (Ref Direct Payment policy)

Carers may also have access to Direct Payments. See Carers and Disabled Children Act 2000 Section 5 powers set out below.

Health Services Act 1968 Section 45. The Local Authority has a power to make arrangements to promote the welfare of older people.

The Carers and Disabled Children Act 2000 Section 2. Under this section the Local Authority has powers to provide services for carers following a carer’s assessment (whether joint or separate) under Section 1 of this Act. Services to carers are not defined by the Act. The local authority may provide any services they see fit to provide and which in their view help the carer care for the person cared for. These services may take the form of physical help or other forms of support such as training or counselling for the carer. (Ref The Carers and Disabled Children Act 2000 policy and practice guidance).

The Carers and Disabled Children Act 2000 Section 5. This section extends the option of Direct Payments to carers aged 16 years or over who care for a person aged 18 or over. (Ref The Carers and Disabled Children Act 2000 policy and practice guidance).