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Annotated bibliography of Cochrane review for elevator pitch

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Annotated bibliography of Cochrane review for elevator pitch

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Thought it might be helpful to summarise the study like this first :)
-Victoria

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Cochrane review

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Psychosis and Schizophrenia - Megan

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Psychosis and schizophrenia in adults: prevention and management | Guidance and guidelines | NICE

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Evidence-based recommendations on the prevention and management of psychosis and schizophrenia in adults

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Page 18

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Abstract

Objective: To examine longer-term effectiveness of a needs-based family intervention for carers and out-patients suffering from schizophrenia.

Method: Seventy-nine unselected patient-carer pairs were recruited from a geographical area and allocated randomly to one of two conditions. One group received needs-based cognitive-behavioural family intervention in combination with general family support plus the standard care. The control group received the general family support and standard care only.

Results: Analysis was carried out on an intention-to-treat basis. There was a significant advantage for family intervention, in terms of relapse (37% relapsed compared to 72%, NNT=3) and on other clinical measures. Treatment group and medication compliance were significant and independent predictors of relapse. There was a significant reduction in carer needs in the intervention group.

Conclusion: Family intervention directed at carers' needs within a standard mental health service can produce benefits for patients beyond the term of intervention.

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Needs‐based cognitive‐behavioural family intervention for carers of patients suffering from schizophrenia: 12‐month follow‐up

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Objective: To examine longer-term effectiveness of a needs-based family intervention for carers and out-patients suffering from schizophrenia. Method: Seventy-nine unselected patient-carer pairs were recruited from a geographical area and allocated randomly to one of two conditions. One group received needs-based cognitive-behavioural family intervention in combination with general family support plus the standard care.

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NICE Guidelines for people living with dementia and their carers

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NICE Guidelines for people living with dementia and their carers

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Section 1.11 is particularly relevant. Recommendations particularly relevant to OT: using peer support groups, psychoeducation groups/individual sessions, information giving, training in understanding the condition and in problem solving, involvement in family meetings, carer participation in interventions,  if carer is experiencing psychological distress CBT is recommended, and respite/short break.

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Dementia: supporting people with dementia and their carers in health and social care | Guidance and guidelines | NICE

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Evidence-based recommendations on supporting people with dementia and their carers in health and social care

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NICE guidelines for Carers being developed

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NICE guidelines for Carers being developed

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Specific guidelines for working with carers is currently under development, will be published next year June 2019.

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Carers | Guidance and guideline topic | NICE

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Abstract

Objective: To examine longer-term effectiveness of a needs-based family intervention for carers and out-patients suffering from schizophrenia.

Method: Seventy-nine unselected patient-carer pairs were recruited from a geographical area and allocated randomly to one of two conditions. One group received needs-based cognitive-behavioural family intervention in combination with general family support plus the standard care. The control group received the general family support and standard care only.

Results: Analysis was carried out on an intention-to-treat basis. There was a significant advantage for family intervention, in terms of relapse (37% relapsed compared to 72%, NNT=3) and on other clinical measures. Treatment group and medication compliance were significant and independent predictors of relapse. There was a significant reduction in carer needs in the intervention group.

Conclusion: Family intervention directed at carers' needs within a standard mental health service can produce benefits for patients beyond the term of intervention.

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Needs‐based cognitive‐behavioural family intervention for carers of patients suffering from schizophrenia: 12‐month follow‐up

# data[].attributes.attachment_link.description
Objective: To examine longer-term effectiveness of a needs-based family intervention for carers and out-patients suffering from schizophrenia. Method: Seventy-nine unselected patient-carer pairs were recruited from a geographical area and allocated randomly to one of two conditions. One group received needs-based cognitive-behavioural family intervention in combination with general family support plus the standard care.

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Week 24 - cost effectiveness of OT intervention for dementia patients and their carers

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Week 24 - cost effectiveness of OT intervention for dementia patients and their carers

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Participants

From April 2001 to January 2005, we recruited people with dementia and their care givers from the memory clinic and the day clinic of a department of geriatrics. Patients were included if they were aged 65 or over, had been diagnosed with mild to moderate dementia, were living in the community, and had a primary care giver who cared for them at least once a week. The diagnosis of dementia was based on criteria from the Diagnostic and Statistical Manual of Mental Disorders, fourth edition. 26 Severity of dementia was determined with the brief cognitive rating scale (BCRS), 27 with a score of 9-24 indicating mild dementia and a score of 25-40 indicating moderate dementia. We excluded patients with a score >12 on the geriatric depression scale (30 items), 28 severe behavioural or psychological symptoms in dementia (BPSD), and severe illnesses as judged by a geriatrician and those in whom goals of occupational therapy could not be defined or who were not on stable treatment of a dementia drug (that is, less than three months on the same dose of a cholinesterase inhibitor or memantine). We also excluded care givers with severe illnesses. Detailed description of the participants has been published elsewhere. 9

Randomisation and procedures

Patients were randomly assigned by blocked randomisation (block size of four) to the intervention (10 sessions of occupational therapy at home over five weeks) or control group (usual care with no occupational therapy), which was stratified by level of dementia (mild or moderate). A statistician not involved in the study carried out randomisation. Concealed envelopes were used to allocate the patients and these envelopes were opened by an independent secretary. Patients and care givers were aware of the treatment assigned. The assessors (MT or MJLG) were blinded to group allocation. Patients and care givers were asked before each assessment not to inform the assessors about the intervention. To check the success or failure of the blinding after each measurement the assessors were asked if they had been told or knew for sure to which group each patient had been allocated. The total study period per patient was three months from the moment of inclusion. The control group received occupational therapy after completion of the study (three months later). Detailed description of randomisation and procedures has been published elsewhere. 9

Intervention

The study intervention was developed in a consensus process 29 and was implemented by experienced occupational therapists who had been trained (80 hours) and were experienced (at least 240 hours) in delivering treatment according to this client centred occupational therapy guideline for patients with dementia. 6 9 10 Treatment consisted of 10 one hour sessions held over five weeks and focused on both patients and their primary care givers. In the first four sessions of diagnostics and goal defining, patients and primary care givers learnt to define their problems and choose and prioritise meaningful activities they wanted to improve. To this end, the occupational therapists used three client centred narrative interview instruments. The occupational therapist evaluated the possibilities for modifying the patient's home and environment and observed the patient's ability to perform relevant daily activities and to use compensatory and environmental strategies. Compensatory strategies are used to adapt activities of daily living to the disabilities of patients, and environmental strategies are used to adapt the patients' environment to their cognitive disabilities. The therapist also observed primary care givers' abilities and supervision skills.

In the remaining six sessions, patients were taught to optimise these compensatory and environmental strategies to improve their performance of daily activities. Primary care givers were trained, by means of cognitive and behavioural interventions, to use effective supervision, problem solving, and coping strategies to sustain patients' and their own autonomy and social participation.

The total time spent for the intervention, including the time spent for treatment at home (10 hours), narrative analysis, reports, and multidisciplinary briefing was about 18 hours per patient and care giver together. More detailed description of the intervention has been published elsewhere. 10

Outcome assessments of effects

We assessed patients and their primary care givers at baseline before the intervention and six weeks and three months later. Our primary outcome measure for patients was daily functioning assessed with the process scale of the assessment of motor and process skills, 30 in which scores range from −3 to 4 (higher scores indicate better process skills), and with the performance scale of the interview of deterioration in daily activities in dementia, 31 in which scores range from 0 to 44 (lower scores indicate less need for assistance). The primary outcome for care givers was assessed with the sense of competence questionnaire, 32 in which scores ranged from 27 to 135 (higher scores denote greater sense of competence).

Over a three month period these three primary outcomes were combined in one measure for successful treatment outcome for the economic evaluation. Successful outcome was defined as a clinically relevant improvement in patients and care givers for all three primary outcome measures (process scale, performance scale, and competence scale). This means that the treatment was judged successful if the process, performance, and competence scale scores showed improvements of ≥0.5 points, ≥20%, and ≥5 points, respectively; the criteria for clinical significance. 30 31 32

Demographic characteristics and outcome measures collected at baseline included information on the age, sex, and educational level of the patient and care giver, and information on patients' comorbidity (assessed with the cumulative illness rating scale for geriatrics 33), depressive mood (assessed with the geriatric depression scale 28), cognition (assessed with the brief cognitive rating scale 27), and behaviour (assessed with the revised memory and behavioural problems checklist 34 35). For each carer we also collected information on the relationship to the patient and depression (assessed with the centre for epidemiologic depression scale 36).

Cost analysis

We evaluated costs from a societal viewpoint and included both direct costs inside and outside the healthcare service and indirect costs outside the healthcare service. This societal viewpoint includes all costs our society met as a consequence of this community occupational therapy 37 and thus includes not only the costs of healthcare services delivered by different healthcare workers but also the estimated costs for gains and losses in productivity of the care givers. 38 Because the study lasted only three months we did not expect a discount effect and therefore did not correct for inflation. We performed an incremental analysis in which we analysed in detail only costs that potentially differed between the two groups.

We used several instruments to measure the consumed resources. The primary care givers kept a diary to record the patients' visits to the general practitioner, physiotherapist, social worker, or other healthcare suppliers specifically related to the dementia. Care givers also used these diaries to register their own visits to healthcare services if they had physical or emotional health complaints and their hours spent on care for their relatives (or friends or neighbours). They recorded the number of hours the patients received care at home from a nurse or a housekeeper or day care and if they received other services like meals on wheels. Finally, they noted the days of illness in the patients and the number of days patients had spent in day care or were admitted to hospital, nursing homes, or homes for the elderly. Three diaries were handed out. At six and 12 weeks the researchers received the diary that was filled in by the primary care givers in the previous six weeks. At baseline, care givers filled in a diary for the past six weeks retrospectively.

The quantities measured were multiplied by unit costs (prices) to obtain the costs involved. The costs for community occupational therapy sessions were based on outpatient price for employee costs (this is, a defined price for outpatient occupational therapy per hour), and additional costs for home visits, and travelling costs (distance multiplied by price per kilometre). 39 The additional costs of occupational therapy (hours of administration and analysis of interview data, reports, advice, and multidisciplinary briefing) were based on the employee costs per hour. We used these figures to compute standard prices for occupational therapy home visits and for additional hours spent by the occupational therapist. We based prices for visits to the general practitioner, day care, home care or household support, and other resources, such as visits to the physiotherapist, on Dutch guidelines for economic health care. 38 Costs for the hospital social worker and hospital physician were calculated from the employee costs multiplied by a percentage of 39% for employer premiums as social taxes, holidays, and employee facilities. Hours invested by care givers were counted according to Dutch guidelines, which reflect an average of costs for care givers still in paid employment and care givers not working any more. These costs for informal care giving are computed according to the "friction cost method" in which a price for care giving in general is computed based on hours of absence because of care giving or illnesses of the care givers and which is valued at an hourly wage of a middle aged cleaning person of €8 (£6, $12) an hour. 38

Statistical analysis

We analysed differences in outcome by analyses of covariance of the primary outcome measures (process scale of the assessment of motor and process skills, performance scale of the interview of deterioration in daily activities, and competence scale assessed by the sense of competence questionnaire at three months) based on an intention to treat analysis of all available data and carrying forward the last observation for drop outs and those with missing data. Participants with missing data at baseline were not included in the analyses as in the randomised controlled trial. 9 The covariates were age, sex, relationship between the patient and the care giver, other care givers, and baseline scores for cognitive functioning on the mini-mental state examination (score 10-24 for mild to moderate dementia), 26 depression assessed with the geriatric depression scale (30 items), 28 comorbidity assessed with the cumulative illness rating scale for geriatrics, 34 behaviour assessed with the revised memory and behavioural problems checklist, 34 35 and the outcome variable.

The study was powered to detect a clinically relevant difference in change between the groups over time of 0.5 points on the process scale, 30 20% improvement on the performance scale, 31 and a 5 point difference on the competence scale, 32 with a power of 80% on the basis of one sided testing, a standard deviation of 0.8 on the process scale, and n≥100. The power calculation was based on earlier data 20 and on the minimal clinically relevant differences in the primary outcomes. 30 31

We computed the proportion of patients and care givers achieving a clinically relevant improvement for each of the primary outcome measures separately and for all three together, which was the fraction with successful treatment outcome. We calculated the difference in treatment effect as the difference in successfully treated patients and care givers combined. Incremental treatment costs were calculated as the difference in mean total care costs. We replaced missing values in quantities of care with series means. Based on the differences in mean total costs between the groups, and the change in outcome measure, we calculated an incremental cost effectiveness ratio, which was expressed as total costs per successful treatment. Bootstrap methods were used to explore the uncertainty in the estimates of cost effectiveness and determine confidence intervals.

We used one way sensitivity analyses to examine the robustness of the findings of the cost effectiveness analysis. In the cost analysis, we calculated prices for occupational therapy, other healthcare resources, and care giving by primary care givers during follow-up and performed a sensitivity analysis on these figures. We assessed cost effectiveness graphically with an acceptability curve to summarise the evidence in support of the intervention being cost effective compared with usual care for all potential values of the willingness to pay per patient-care giver unit per successful treatment.

Effects

We evaluated 275 people with dementia who were living in the community. Of the 135 eligible patients randomised, three (one in the intervention group, two in the control group) with their care givers stopped the trial immediately after randomisation because they did not want to continue and they did not receive the study intervention. This left 132 patients with care givers for the intention to treat analysis 9 and the cost effectiveness analysis.

The baseline characteristics of patients and care givers were well matched between the two groups (table 1). ⇓ Age differences (patients and their primary care givers were 2.0 and 4.7 years younger in the control group) were corrected in the analysis of covariance. Socioeconomic status was equally divided over the groups. The occupational therapist visited those in the intervention group an average of nine times at home for one hour and spent an additional seven hours (time for administration and analysis of interview data, reports, advice, and multidisciplinary briefing) per patient and care giver couple (table 2) ⇓ .

At three months 53 of the 68 patients in the intervention group and 52 of the 67 in the control group remained in the study and these were the same participants as in the effectiveness study. 9

We used intention to treat analysis (n=132), with the last observation carried forward, to analyse the effects in both groups. There were significant differences between the groups on all primary outcome variables at three months. In the intention to treat analysis (n=132), treatment was considered as successful (clinically relevant and significant improvement on all three outcome measures of patients' daily functioning and care givers' sense of competence) in 26 patients and their care givers, of whom 25 (37%) were in the intervention group (n=67) and one (1.5%) was in the control group (n=65). The number needed to treat for a successful treatment outcome was 2.8 (95% confidence interval 2.7 to 2.9) (table 3) ⇓ . No adverse events were reported in either group.

Costs

The occupational therapy intervention cost €1183 (£848, $1738) per patient and care giver couple (95% confidence interval €1128 to €1239) (table 4). ⇓ The usual care group received no occupational therapy. The costs for visits to a general practitioner and hospital doctor were equal in both groups. Costs for other health care, such as nursing home care (−€417), domestic home care (−€91), social worker (−€8), and physiotherapist (−€36), day care (−€197), and meals on wheels (−€8) were all lower in the intervention group (table 4) ⇓ , as were costs for admission to hospital (−€242) and nursing homes and homes for the elderly (−€172) (table 5). ⇓ The main cost savings were from reduced informal care in the intervention group (−€1762) (table 5). ⇓

The economic evaluation showed average savings of €1748 (£1279, $2621) per couple successfully treated with occupational therapy. The probability of occupational therapy being the dominant intervention was estimated to be 94% (figure) ⇓ . The acceptability curve shows, when interpreted in a Bayesian sense, that if society is willing to pay €2000 (£1469, $2933) or more for a successful treatment then there is 99% probability that occupational therapy is efficient (figure). ⇓

Relevance of results

Comparison of our results with others is difficult because of the lack of similar studies. Hay et al looked at cost effectiveness of a preventive occupational therapy for independent living older adults in a randomised controlled trial with an occupational therapy group, a social activity group, and a control with no treatment. 22 The costs for the nine month preventive occupational therapy programme ($548 per person) and the follow-up costs at 15 months for the occupational therapy group ($967) were lower than for the social activity group ($1726) and the control ($3334). The authors concluded that the programme was cost effective and showed a trend towards decreased medical expenditures. The estimated cost per quality adjusted life year (QALY) for the occupational therapy group were $10 666 per group of about 55 patients.

Strengths and limitations

Our study was empirically robust because we used a randomised controlled design and carried out the economic analysis from a societal perspective. Another strong point is the new outcome measure "successful treatment outcome" that we used as the primary outcome in this cost effectiveness analysis. This outcome measure is innovative and combines the effect of occupational therapy on outcome in both patient and care giver, which represents the whole content and outcome of successful occupational therapy treatment.

We did not include a generic measure for quality of life on which QALYs could be computed, which limits comparability with other interventions. QALYs are, according to most guidelines on cost effectiveness, the principal measure of effect in economic analyses. Mostly this is because there are reference values for "willingness to pay for QALYs," which is important when costs need to be traded off against effects. In our particular case, however, in which the experimental treatment is dominant (lower costs and more effects), there is no trade off between costs and effects. Moreover, given the results (an average cost saving and a 95% probability of being the dominant strategy) the conclusion that occupational therapy is cost effective would not be altered if we included quality of life as an outcome measure.

A second limitation of our study design is that, as with some other types of treatment, we could not carry out a double blind study because the patients and their care givers and the occupational therapists could not be blinded to allocation. We tried to maintain masked conditions when possible when it came to assessment, which succeeded for 80% of the cases. 40 For this reason, we believe that our results are not significantly affected by observer bias.

The study took place over a relatively short time, with a three month follow-up. 37 Based on the remaining effects on the primary outcomes of the randomised controlled trial at three months, 9 however, we expect that the savings at six months would be even greater, with no more costs incurred. In future studies the effectiveness, and consequently its cost effectiveness, should be assessed to determine if effects indeed remain over time.

Our participants might not be representative of all patients with mild to moderate dementia in our health region as they were recruited primarily from the outpatient clinics of the university hospital and not from other institutions or directly from general practices. We chose this recruitment strategy because we wanted to achieve uniformity in terms of screening and diagnosis of dementia to facilitate comparison with other national and international studies. Our participants were also not representative of all older people with mild to moderate dementia living in the community because we excluded those who lived alone. The groups might be comparable on socioeconomic status because the whole range of educational levels and former and recent occupations was representative of the general population. Another issue is the costs for informal care giving, which were computed with the "friction cost method." 38 In our study most of the care givers were retired. If other informal care givers had been used (for example, more employed sons and daughters or neighbours) another value would have been plausible. We assumed that medical costs did not increase because of the short time window. 22 According to that study we have underestimated the potential medical savings associated with our intervention.

Ethical questions can be raised about the exclusion of individuals from this highly effective and efficient intervention. However, it was not previously recommended in the Netherlands because there was no sound evidence for effectiveness.

Future research

We expect that this intervention might also be cost effective for older people with dementia without an informal care giver but who have the help of a professional home care worker. Though home care workers are trained, training does not extend to occupational therapy but this would probably result in a more effective care strategy resulting in even higher savings. We will investigate this in a future study on the effectiveness of a national implementation policy of our guideline. We also expect that it would be helpful if home care workers were educated to supervise care givers in continuing their effective way of care giving at home several months after the intervention ends. It also would be interesting to investigate whether home care workers with special training in occupational therapy would be able to deliver part of the occupational therapy under supervision of occupational therapists.

Recommendations

Well educated and well trained occupational therapists are needed to perform this complex community occupational therapy intervention (including occupational therapy diagnostics and specialised observation and interviewing skills, occupational therapy goal setting, and developing an effective treatment plan). Occupational therapists are best equipped to carry out the specific tasks, with the possible assistance of occupational therapy assistants or educated home care workers in future.

Community occupational therapy is a highly effective non-pharmacological therapy for older people with dementia and their care givers and not only improves the daily functioning of older people with dementia and their care givers' sense of competence 9 but also improves the quality of life, mood, and health status of both patients and care givers, 6 which are recommended as major outcomes in therapeutic research in dementia. 41 As this community occupational therapy intervention was also cost effective we highly recommend it in all community health services, primary care services, and outpatient services for people with dementia and their care givers. Moreover, if the National Institute for Health and Clinical Excellence (NICE) 42 criteria for drug use were be applied to this intervention, implementation would be beyond all doubt. A multi-centred study would determine the cost effectiveness in different settings and healthcare regions.

View Abstract

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Community occupational therapy for older patients with dementia and their care givers: cost effectiveness study

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From April 2001 to January 2005, we recruited people with dementia and their care givers from the memory clinic and the day clinic of a department of geriatrics. Patients were included if they were aged 65 or over, had been diagnosed with mild to moderate dementia, were living in the community, and had a primary care giver who cared for them at least once a week.

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Megan's article - RCT looking at carers of those with psychosis

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The Care Act (2014) and the Effect upon Carers of Patients with Long Term Mental Health Conditions Strengths - The Care Act encourages professionals to consider the needs of carers as well as service users. Raises awareness and gives a set of guidelines. Some NHS services have now set up ser...

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Including schools and social services. Also lists some non-statutory services such as charities.

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Friends and relatives are often the first people young carers turn to for help. Teachers can also be good people to speak to about any problems you have. Social workers, health workers and other professionals can also help young carers

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non-statutory

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Give with confidence. The Chilterns MS Centre is registered with the Fundraising Regulator Copyright © 2018 Chilterns MS Centre. Registered charity: 800853. Company Number: 02294557. Website by Teapot Creative

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Central and North West London NHS Foundation Trust run a carers group in their 'Recovery and Wellbeing College'. Many CNWL mental health services, including dementia care also run 'carers forums' to offer emotional and practical support and advice for carers.

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Resources for carers, including our newsletter and links to other organisations.

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Carers UK is an umbrella charity that covers the whole of the UK. This is then divided up into different counties and carers can access support from their local carers centre, e.g. Hillingdon carers/Brent carers/ 'care in Herts' (Hertfordshire).

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1 year on - findings suggest the care act made little to no difference to carers.

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Review shows new law has made little difference to England's unpaid carers.

A year on from the introduction of the Care Act, a review by the UK's largest charity for unpaid carers has found that the new act has made little or no difference to the 5.4 million carers in England.

Carers Trust surveyed and spoke to unpaid carers looking after their sick or disabled family and friends, and to health and social care professionals to find out how well they thought the new act, which entitles carers to an assessment of their needs, was working.

The review, led by former care minister Paul Burstow, found a 'mixed picture' with examples of good practice, but in many cases found that the act had made no difference to carers. In some instances, carers hadn't heard about the measures that had been introduced, which could support their needs and well-being as a carer.

The new Care Act came into force on 1 April 2015 and gave carers rights on an equal footing to the people they care for.

Their new rights include taking into consideration the carer's health and wellbeing, family relationships and their need to balance their home life with their education or work. If they are found to be eligible they are entitled to support, sometimes funded by their local authority. In addition, all local authorities must provide advice and information and prevent carers' needs from getting worse.

Former Care Minister, Prof Paul Burstow said:

"For many of the carers who responded to Carers Trust's calls for evidence, the response was stark - the act had made no difference. It was news to some that there were new rights as they simply hadn't heard of them.

"We found evidence that when it comes to an assessment, the law is either poorly understood or ignored by those responsible. Too often it appears that carers are fobbed off with a one-off payment by local authorities as if that discharges the obligation to promote the carers' wellbeing.

"We know it's early days, but more work must be done to impress upon those responsible for the day-to-day implementation of the act that business as usual is not good enough. The Care Act raises the bar for carers but to realise its potential government, councils, social workers and carers organisations all have more to do."

The review received more than 800 responses, which included evidence from three days of oral hearings where a panel heard personal accounts from carers as well as from leading health and care providers and carers groups.

It found:

Only 21% of respondents felt that things had changed as a result of The Care Act 2014

65% of carers who responded said they had not had an assessment, while 4% didn't know whether or not they'd had an assessment

Only 5% of respondents were non-white, suggesting that the act was failing to be implemented in Black and Minority Ethnic groups

31% had received an assessment and described the quality as good

Many carers don't see themselves as carers which posed a problem identifying and supporting them, said Carers Trust

Gail Scott-Spicer, CEO of Carers Trust, said:

"The Care Act was widely welcomed when it was introduced, but it's clear from our report that it is not being implemented fully everywhere and carers are not getting the support they need."

As a result of the review the panel is recommending:

that national and local government, together with the NHS, urgently invest in the support needed to ensure that the new legal rights for carers are being introduced in all areas. This will ensure carers receive the support and breaks they need.

The Care Act support programme should continue supporting councils with resources and training to ensure its full implementation of the Care Act for carers.

Local Authorities with the LGA/ADASS, should work with carers and service users to develop a self-assessment tool to monitor their progress with implementing the act. As part of this they should urgently review their carer assessment waiting times and recording systems, to ensure that carers receive timely support.

NHS Trust providers and GP practices should review their policies to ensure that their organisations are carer-friendly, in order for carers to be identified, involved and consulted, particularly when the person they care for is being discharged from hospital.

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Review shows new law has made little difference to England's unpaid carers. A year on from the introduction of the Care Act, a review by the UK's largest charity for unpaid carers has found that the new act has made little or no difference to the 5.4 million carers in England.

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This is important for any professional who may come in to contact with carers to be aware of. Particularly when it comes to 'carers assessments'. These are usually done by someone in social services and anyone can refer a carer.

https://carers.org/article/carers-assessment

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Factsheet 1: General responsibilities of local authorities: prevention, information and advice, and shaping the market of care and support services

Information, information, information - without it, how can people be truly at the heart of decisions? Information should be available to all regardless of how their care is paid for. There are some things that should be universal - information is one.

Public response to the Caring for our future engagement

This factsheet describes how the Care Act and supporting guidance place a series of new duties and responsibilities on local authorities about care and support for adults.

What role do local authorities play in care and support?

Under the Care Act, local authorities have new functions. This is to make sure that people who live in their areas:

How does the Act help prevent people developing care and support needs?

The Care Act helps to improve people's independence and wellbeing. It makes clear that local authorities must provide or arrange services that help prevent people developing needs for care and support or delay people deteriorating such that they would need ongoing care and support.

Local authorities have to consider various factors:

In taking on this role, local authorities need to work with their communities and provide or arrange services that help to keep people well and independent. This should include identifying the local support and resources already available, and helping people to access them.

Local authorities should also provide or arrange a range of services which are aimed at reducing needs and helping people regain skills, for instance after a spell in hospital. They should work with other partners, like the NHS, to think about what types of service local people may need now and in the future.

How does the Act improve information and advice?

Local authorities need to provide comprehensive information and advice about care and support services in their local area. This is to help people to understand how care and support services work locally, the care and funding options available, and how people can access care and support services.

The Act clearly sets out that they must provide information on:

what types of care and support are available - e.g. specialised dementia care, befriending services, reablement, personal assistance, residential care etc

the range of care and support services available to local people, i.e. what local providers offer certain types of services

what process local people need to use to get care and support that is available

where local people can find independent financial advice about care and support and help them to access it

how people can raise concerns about the safety or wellbeing of someone who has care and support needs

Local authorities must also help people to benefit from independent financial advice, so that they can get support to plan and prepare for the future costs of care.

All information and advice must be provided in formats that help people to understand, regardless of their needs. This may include a range of different types of information, and include working with partners to provide information on different services together.

How will the Act improve the range and quality of services available?

The Care Act requires local authorities to help develop a market that delivers a wide range of sustainable high-quality care and support services, that will be available to their communities.

When buying and arranging services, local authorities must consider how they might affect an individual's wellbeing. This makes it clear that local authorities should think about whether their approaches to buying and arranging services support and promote the wellbeing of people receiving those services.

Local authorities should also engage with local providers, to help each other understand what services are likely to be needed in the future, and what new types of support should be developed. To do this, authorities should engage with local people about their needs and aspirations.

A wider range of high quality services will give people more control and help them to make more effective and personalised choices over their care. They should therefore get better care that works for them.

Factsheet 2: Who is entitled to public care and support?

For far too long people's needs assessments have been driven by the service on offer or that can be provided in a particular area... such an approach fails to recognise the richness and complexity of people's lives and fails to support or promote truly person-centred care.

Care Quality Commission

This factsheet describes how the Care Act and supporting guidance provide for adults' entitlements to public care and support.

Why do entitlements matter?

Legal entitlements or duties make clear what local authorities must do, and what people can expect, so that everyone knows where they stand. It is important that the law explains when people will be provided with care and support by the local authority, to ensure that this happens fairly and consistently.

Why did we need to change the law?

Before the Care Act, people had different entitlements for different types of care and support. These were spread across a number of Acts of Parliament, some over 60 years old. The law was confusing and complex.

We wanted to design a simpler, modern law for 21st Century care and support.

All of this required some significant changes to the old law.

What did the Act do?

The Act creates a single, consistent route to establishing an entitlement to public care and support for all adults with needs for care and support. It also creates the first ever entitlement to support for carers, on a similar basis (see also factsheet 8). The Act is also clear about the steps that must be followed to work out this entitlement, to help people understand the process. It follows the person's 'journey' in the care and support system. It begins with an assessment of their needs and a decision about whether their needs are eligible, including a financial assessment where necessary. This will determine whether people need to pay for their own care, and in the future will include the new capped costs payment system (see factsheet 6). After this process of assessment is finished, the decision can then be made about whether the adult is entitled to care and support arranged by the local authority.

When must the local authority meet a person's care and support needs?

The Act sets out a new legal duty for an adult's 'eligible needs' to be met by the local authority, subject to their financial circumstances. Their eligible needs are those that are determined after the assessment (see factsheet 3).

The Act says clearly that a person will be entitled to have their needs met when:

These are the 5 situations:

the type of care and support they need is provided free of charge

the person cannot afford to pay the full cost of their care and support

the person asks the local authority to meet their needs

the person does not have mental capacity, and has no one else to arrange care for them

when the cap on care costs comes into force, their total care and support costs have exceeded the cap.

What happens if the local authority must meet their needs?

The local authority must help the person to make decisions about how they want their needs to be met and prepare a care and support plan (see factsheet 4).

Under the Act, there is more flexibility to focus on what the person needs and what they want to achieve, and to design a package of care and support that suits them. 'Meeting needs' allows for different approaches, so that they can get the right level and type of care and support when they need it.

A person will still be able to receive the same types of care and support as before. If their needs can be best met in a care home, that is what should be arranged.

What and when will people have to pay for their care?

Some types of care and support are provided free of charge but often the local authority will charge a cost. Depending on a person's finances, a local authority may ask an individual to contribute towards the costs of their care (up to and including the full amount).

In cases where the costs of care would reduce a person's income below a set level, a local authority will pay some of the costs to make sure that the person is left with this minimum level of income. This ensures people will still receive the care they need in cases where they have only modest resources.

In any other cases, the adult can still ask the local authority, regardless of their finances, to arrange their care and support for them. It makes it less likely that people who are uncertain about the system or lack confidence to arrange their care do not go without. However, they will still need to pay for their care and support if they have adequate financial resources.

If people are due to pay charges for their care and support, they may be entitled to a 'deferred payment agreement', through which they delay charges, and repay the local authority at a later date.

Factsheet 3: Assessing needs and determining eligibility

...a move to outcome and needs based assessment would put the individual and their views, needs and wishes at the centre of the work, as the setting of outcomes is both a personal and subjective process.

Joseph Rowntree Foundation

This factsheet describes how the Act and supporting regulations and guidance set out the process of assessing an adult's needs for care and support, and deciding whether a person is eligible for publicly funded care and support.

What is the assessment process?

An assessment is how a local authority decides whether a person needs care and support to help them live their day-to-day life.

The assessment must be carried out by an appropriately trained assessor, for instance a social worker, who will consider a number of factors, such as:

The aim is to get a full picture of the person and what needs and goals they may have. After carrying out the assessment, the local authority will then consider whether any of the needs identified are eligible for support.

Because not all care needs are met by the State, the local authority uses an eligibility framework to decide which needs are eligible to be met by public care and support.

Why do we need to change the law?

As well as helping councils make decisions, the assessment allows people to express their own wishes and preferences. Talking with people to understand their needs, and how they can meet them, will support them to maintain their independence for longer and make better choices about their care. This is an important process in its own right.

Local authority responsibilities for assessments were previously set out in a number of different laws. These tended to focus on what service should be provided, rather than on what the person actually needs or wants. We want a care and support system built around the individual. We therefore changed, so that assessments focus on what the person wants to achieve. Each local authority previously set its own eligibility threshold based on guidance. This meant that the amount - and type - of care that was provided by the council varied depending on where a person lived.

What are the requirements for assessment?

The Act gives local authorities a duty to carry out a needs assessment in order to determine whether an adult has needs for care and support. The assessment:

As part of the process, the authority must consider other things besides services that can contribute to the desired outcomes, and whether any universal preventative services or other services available locally could help them stay well for longer. For example, the local authority may offer the person a period of reablement to reduce needs and regain skills, before completing the assessment.

The regulations which support the Act ensure that the assessment is appropriate and proportionate, so that people have as much contact with the authority as they need. In addition, they require the authority to consider the wider needs of the family of the person (for instance, if there is a young carer).

The regulations will also require that assessors have the appropriate training, and that experts carry out complex assessments such as for people who are deafblind.

If the person agrees and has capacity, they may also carry out a self-assessment, where the person takes the lead in identifying their needs and outcomes. The local authority will still be involved to help support the process, and to be satisfied that the person has identified all of their needs, but the person can take more control.

How does the authority determine who has eligible needs?

After the assessment, the local authority must determine whether the person is eligible for care and support. This is set out in regulations that set the national minimum threshold for eligibility, which will be consistent across England.

Determining eligible needs is important to work out, as the local authority must meet the adult's eligible needs for care and support (see factsheet 2). The person will have eligible needs if they meet all of the following:

The outcomes are specified in the regulations, and include people's day-to-day outcomes such as dressing maintaining personal relationships, and working or going to school.

Where the person has eligible needs, and wants the local authority's help to meet them, then the authority will discuss the person's care and support plan with them (see factsheet 4). In all cases, the local authority must give people advice and information about what support is available in the community to help them.

The local authority must provide the adult with a copy of their assessment and their eligibility determination.

This factsheet relates only to adults who need care and support. Factsheet 8 explains the equivalent provisions for carers.

Factsheet 4: Personalising care and support planning

It is essential that personal budgets are recognised [in the law]. To leave this significant policy development without statutory basis would leave local authorities uncertain of their legal obligations and individuals uncertain of their entitlements.

The Law Commission

This factsheet describes how the Care Act and supporting regulations and guidance give people maximum control over how their needs are met.

What is care and support planning?

Everyone's needs for care and support are different, and needs can be met in many different ways.

The care and support planning process is there to help decide the best way to meet the person's needs. It considers a number of different things, such as what needs the person has, what they want to achieve, what they can do by themselves or with the support they already have, and what types of care and support might be available to help them in the local area.

The planning process takes place with the local authority and the person, any carer they have and any other person they ask the authority to involve. Where the person lacks the capacity to ask, any person who appears to the authority to be interested in the adult's welfare should be involved. This process will decide how to meet the needs of the person, and the local authority must do everything it reasonably can to reach agreement with the person as to how their needs should be met.

The local authority must produce a plan that sets out the detail of what was agreed. As part of the planning process, the local authority will tell the person about their personal budget. This is the amount of money that the local authority has worked out it will cost to arrange the necessary care and support for that person.

This includes any amount that the local authority is going to pay itself towards those costs (which might range from all, to none of the total). The personal budget helps the adult to decide how much control they want to have over arranging their own care and support, by seeing how much money is available to buy the care they need.

Using the information from the personal budget, the person can ask the local authority for a direct payment.

A direct payment is a payment of money from the local authority to either the person needing care and support, or to someone else acting on their behalf, to pay for the cost of arranging all or part of their own support. The local authority could make a direct payment instead of arranging or providing any services itself, if the adult asks them to do so. This ensures the adult can take full control over their own care.

The local authority must provide a direct payment to someone who meets the conditions in the Act and regulations.

Why do we need to change the law?

Before the Care Act, of all the things above, only direct payments had a place in law. Care and support planning and personal budgets, had previously only been set out in guidance.

We wanted the law to focus on the person and their needs, their choices and what they want to achieve. It should put them in control of their lives and the care and support they receive. The care and support planning process is the way of making this happen. It provides people who use services, and carers, with clear legal rights to a care and support plan.

Personal budgets also needed to be included in the law as they are important for making care and support personalised. If they were not in the law, it would be more difficult to offer them to everyone. While some local authorities were already making great progress in this area, legislation was needed to make it happen for everyone eligible for statutory support, wherever they live in England.

What does the Care Act do?

The Act sets out when the local authority has a responsibility to meet someone's care and support needs. It also sets out how it can do so even if it does not have to. The Act also says what must happen next to help the person make decisions about how their needs should be met.

The Act gives local authorities a new legal responsibility to provide a care and support plan (or a support plan in the case of a carer).

For the first time, the Act provides people with a legal entitlement to a personal budget, which is an important part of the care and support plan, or support plan. The personal budget must be included in every plan, unless the person is only receiving intermediate care or reablement support to meet their identified needs.

This adds to a person's right to ask for a direct payment to meet some or all of their needs. Provided that the direct payment is used to meet the needs identified in the plan, the person should have freedom over how the money is spent.

Even when an assessment says that someone does not have needs that the local authority should meet, the local authority must advise people about what needs they do have, and how to meet them or prevent further needs from developing.

The person concerned must be involved in developing their plan. The local authority will have to do everything it reasonably can to agree the plan with them.

It must also provide an independent advocate to help the person take part in the planning and review process, if that person would otherwise have substantial difficulty in doing so.

Completing the planning process and putting in place care and support arrangements does not mean the end of the local authority's responsibilities. The local authority has a legal responsibility to review the plan to make sure that the adult's needs and outcomes continue to be met over time. If anything has changed, the authority must carry out a new assessment. The person themselves also has the right to request a review of their care and support plan, if they wish.

Factsheet 5: Charging and financial assessments

All councils should have transparent charging policies... service users, carers and the public should understand the purpose of local charging policies and the criteria used to determine levels of charging for particular services.

Standing Commission on Carers

This factsheet describes how local authorities assess what people can afford to pay for their care and support under the Care Act.

What is the charging process?

Care and support is not a free service unlike the NHS. People have always had to pay something towards the cost of their care and support. Whilst some types of care and support are provided free, many types will be subject to a charge.

People will only be asked to pay what they can afford. Sometimes the person will pay the full cost and sometimes the cost will be shared between the person and their local authority.

To decide what a person can afford to pay, a local authority will carry out a financial assessment. The local authority will consider the person's income and any assets they own, like a house or other investments. The local authority will then calculate how much the person can afford to pay towards their care and support costs.

Sometimes a homeowner may want to consider a 'deferred payment agreement' with the local authority. This is an arrangement whereby the person agrees, with their local authority, to pay some of their fees at a later date. This means they should not be forced to sell their home during their lifetime, to pay for their care. The person usually repays the local authority from the sale of their property or it is repaid from their estate.

When can a local authority charge for care and support?

First, a local authority will assess someone and decide whether they have eligible care needs. The local authority will then work with the person to consider what types of support might be provided to meet their needs.

Not all types of care and support involve a cost for the person. Whilst the Act gives local authorities the power to charge for care and support, they may not charge for services which the regulations say must always be free, for example reablement services or equipment and minor adaptations to the home.

Additionally, from 2020, where the individual has reached the cap on care costs (see factsheet 6) the local authority may not charge towards the cost of meeting their care and support needs.

How does the local authority decide what charges are due?

If the local authority thinks that the person needs a service for which a charge can be made, it must decide what the person can afford to pay. The rules on how this financial assessment should be carried out are set in the regulations and guidance so that people's finances are assessed in a consistent and transparent way.

The financial assessment will consider what sources of income a person has and what other assets they hold. There are different rules for the treatment of income depending on whether the person is expected to need care in a care home, or other settings.

This financial assessment will ensure that when an adult contributes towards their care and support they must still be left with a certain amount of money for themselves after the local authority has charged them.

Sometimes, the local authority may only make a small charge for a particular service and it would not be practical to carry out a detailed financial assessment. In these cases, the local authority may carry out a 'light-touch' assessment to determine that the person can afford the charge, and will not need to follow the full detail and rules.

Where a local authority agrees to arrange care and support for a person who can afford to pay the full costs of their care the person may ask the local authority the carry out a 'light-touch' financial assessment, for example if they do not want to undergo the detailed process. If the local authority is satisfied that the person will continue to be able to afford the cost of their care, they may agree to this.

After the financial assessment, the local authority will tell the person whether they need to pay for all or some of their care costs.

When can a person defer care charges?

Under a 'deferred payment agreement' people who own their own home may be able to make an arrangement whereby they do not have to sell their home, during their lifetime, to pay their care home costs. Instead, the local authority will pay the costs, and recover the money that the person owes, plus interest, at a later date.

Local authorities are required to offer a deferred payment agreement to anyone meeting the criteria set out in regulations. Local authorities are able to charge interest on these payment arrangements, so that they can cover their own costs of offering them.

Factsheet 6: Reforming how people pay for their care and support

For the first time, individual liabilities will be limited, protecting people against the worst aspects of the current care lottery. The increase in the upper threshold for means-tested support...is also a boost for those with modest resources who are most heavily penalised under the current system. The combined effect of the cap and a higher means test threshold will see more people receive public funding.

The King's Fund

This factsheet describes how the cap on care costs system and the extension to means-tested financial support for care costs will work from April 2020. These reforms aim to end the unfairness and fear caused by unlimited care costs and provide more people with financial support from the State towards the costs of their care and support.

Why are we changing the law?

Unlike health, care and support is not free at the point of use. Everyone has to contribute something towards their care costs, and this will continue in the future.

Currently, only people with assets of less than £23,250 and low incomes receive any help from the State with their care and support costs. People who develop long-term, severe care and support needs can therefore face substantial costs before they can get financial support from the State. We know that 1 in 8 of us will face the highest costs but no-one knows which of us that will be.

What are the funding reforms?

These reforms aim to give everyone the peace of mind that they will be protected from catastrophic care costs by means of a cap on care costs. The cap will limit the amount people have to pay towards the cost of their eligible care and support over their lifetime. An extension to means-tested financial support will work in conjunction with the cap so that people retain more of their assets, and that more people will receive help with the costs of their care from the State.

What do the Act and Regulations do?

The Care Act established the legal framework for the reforms. Regulations made under the Act will come into effect in April 2020 to implement the funding reforms outlined in this factsheet.

Cap on care costs

From April 2020,there will be a cap limiting the amount people will have to pay for their care and support. The level of the cap will be set out in regulations.

How the cap on care costs works

a) Progressing towards the cap

Progress will be based on the cost to the local authority of meeting a person's eligible care and support needs.

For people in a care home a contribution to daily living costs (see below) will be deducted from that cost. The costs will be set out in a person's personal budget if they are receiving local authority support or, if they are meeting the costs themselves, their independent personal budget ( IPB).

An IPB reflects the amount it would cost the local authority to meet a person's eligible care and support needs if it was required to do so.

b) Daily living costs

Wherever we live, we face the same basic costs for things such as rent, food and utilities, irrespective of whether we have a care and support need. As such, these costs will not count towards the cap.

To ensure fairness between people receiving care in different settings, a person in a care home will continue to contribute towards these costs. As it is often difficult to separate the costs of care and support costs and daily living costs for a person in a care home, a notional amount for daily living costs will be set in the regulations.

c) Keeping track

Everyone with eligible needs will have a Care Account that will record their progress towards the cap. This will be held by the local authority and will set out the rate at which a person is progressing and how much they have accrued towards the total. Local authorities will send statements at least annually.

d) Reaching the cap

When a person reaches the cap the local authority will have to meet the person's eligible care and support needs. Everyone will continue to be responsible for paying their daily living costs after they reach the cap. Anyone paying a top-up fee will continue to be responsible for making these payments after they reach the cap.

Extension to means-tested financial support

The amount that the State will pay towards someone's care and support costs will continue to be means tested dependent on the person's assets and income.

The intention is that from April 2020, the upper and lower capital limits for means tested support will be increased so that more people will become eligible for local authority financial support.

Extending choice of accommodation

People who receive local authority financial support and whose care and support needs have been determined to be best met in a care home may choose more expensive accommodation than the amount set in their personal budget.

The additional costs associated with such choices (known as 'top-up' payments) must be met by the person themselves ('first party top ups') or a third party such as a family member or friend, under a written agreement with the local authority. Currently, there are restrictions on the circumstances in which people can make first party top-up payments.

In order to facilitate choice, the regulations will lift the restrictions on first party top-ups in April 2020. However, the decision to make top-up payments will remain completely optional and will, as now, be subject to the person making the payments being willing and able to do so and a written agreement with the local authority.

Factsheet 7: Protecting adults from abuse or neglect

The existing legal framework for adult protection is neither systematic nor coordinated, reflecting sporadic development of safeguarding policy over the last 25 years.

Commission for Social Care Inspection

This factsheet is about how the Act, for the first time, sets out a clear legal framework for how local authorities and other parts of the health and care system should protect adults at risk of abuse or neglect.

What is safeguarding?

'Adult safeguarding' is working with adults with care and support needs to keep them safe from abuse or neglect. It is an important part of what many public services do, and a key responsibility of local authorities.

Safeguarding is aimed at people with care and support needs who may be in vulnerable circumstances and at risk of abuse or neglect. In these cases, local services must work together to spot those at risk and take steps to protect them.

Why do we need to change the law?

Although local authorities have been responsible for safeguarding for many years, there has never been a clear set of laws behind it. As a result, it has often been very unclear who is responsible for what, in practice.

The Act aims to put this right by creating a legal framework so key organisations and individuals with responsibilities for adult safeguarding can agree on how they must work together and what roles they must play to keep adults at risk safe.

What does the Act do?

a) Safeguarding adults boards

Safeguarding is everyone's business, and it is important that organisations work together to protect people who need help and support. Yet one of the biggest challenges is how to bring together the huge number of teams and organisations involved in keeping people safe.

That's why the Act requires local authorities to set up a safeguarding adults board ( SAB) in their area, giving these boards a clear basis in law for the first time.

The Act says that the SAB must:

b) Safeguarding enquiries by local authorities

The Act also requires local authorities to make enquires, or ask others to make enquiries, when they think an adult with care and support needs may be at risk of abuse or neglect in their area and to find out what, if any, action may be needed. This applies whether or not the authority is actually providing any care and support services to that adult.

The enquiry may lead to a number of outcomes, depending on the circumstances, including to prosecution if abuse or neglect is proven. In other cases, the risk of abuse may be tackled, but the adult may have other care and support needs which require different services, and may lead to a needs assessment or review of an existing care and support plan.

c) Safeguarding adult reviews

When there is any failure in safeguarding, the results can be severe and tragic and therefore demand a strong response.

That is why the Act says that SABs must arrange a safeguarding adults review in some circumstances - for instance, if an adult with care and support needs dies as a result of abuse or neglect and there is concern about how one of the members of the SAB acted.

The reviews are about learning lessons for the future. They will make sure SABs get the full picture of what went wrong, so that all organisations involved can improve as a result.

d) Independent advocacy

The local authority will arrange for an independent advocate to represent and support a person who is the subject of a safeguarding enquiry or a safeguarding adult review, if they need help to understand and take part in the enquiry or review and to express their views, wishes, or feelings.

e) Supply of information

It is important that organisations share information related to abuse or neglect with SABs. Not doing so could prevent them from being able to tackle problems quickly and learn lessons to prevent them happening again.

Factsheet 8: the law for carers

The Care Bill in many respects marks a quiet revolution in our attitudes towards, and expectations of, carers. At last, carers will be given the same recognition, respect and parity of esteem with those they support. Historically, many carers have felt that their roles and their own well-being have been undervalued and under-supported. Now we have a once in a lifetime opportunity to be truly acknowledged and valued as expert partners in care.

Dame Philippa Russell, Chair, Standing Commission on Carers

For the first time, carers will be recognised in the law in the same way as those they care for. This factsheet describes how the Care Act sets out carers' legal rights to assessments and support.

Who is a carer?

A carer is someone who helps another person, usually a relative or friend, in their day-to-day life. This is not the same as someone who provides care professionally, or through a voluntary organisation.

The Care Act relates mostly to adult carers - people over 18 who are caring for another adult. This is because young carers (aged under 18) and adults who care for disabled children can be assessed and supported under children's law.

However, the regulations under the Act allow us to make rules about looking at family circumstances when assessing an adult's need for care, which means, for example, making sure that the position of a young carer within a family would not be overlooked. The Act also makes new rules about working with young carers, or adult carers of disabled children, to plan an effective and timely move to adult care and support (see factsheet 3 and factsheet 11).

Why do we need to change the law?

The existing law treats carers differently from the people they care for. It has been developed bit by bit and mixes up rights for carers of different ages. It is complicated, and makes it difficult for carers to understand how to get support themselves.

Currently, carers do not have a legal right to receive support, although local authorities can provide support at their discretion. This means that access to assessment and the range of support on offer can vary considerably.

What does the Care Act do?

a) Assessments

The Act gives local authorities a responsibility to assess a carer's needs for support, where the carer appears to have such needs. This replaces the existing law, which says that the carer must be providing 'a substantial amount of care on a regular basis' in order to qualify for an assessment. This will mean more carers are able to have an assessment, comparable to the right of the people they care for.

The local authority will assess whether the carer has needs and what those needs may be. This assessment will consider the impact of caring on the carer. It will also consider the things that a carer wants to achieve in their own day-to-day life. It must also consider other important issues, such as whether the carer is able or willing to carry on caring, whether they work or want to work, and whether they want to study or do more socially.

If both the carer and the person they care for agree, a combined assessment of both their needs can be undertaken.

b) Eligibility

When the assessment is complete, the local authority must decide whether the carer's needs are 'eligible' for support from the local authority. This approach is similar to that used for adults with care and support needs (see factsheet 3). In the case of carers, eligibility depends on the carer's situation. The carer will be entitled to support if:

they are assessed as having needs that meet the eligibility criteria

the person they care for lives in the local authority area (which means their established home is in that local authority area)

If there is a charge (as there sometimes may be, as explained below) such charge must be accepted by the carer (or the adult being cared for if it falls to them).

c) Support planning

The local authority and the carer will agree a support plan, which sets out how the carer's needs will be met. This might include help with housework, buying a laptop to keep in touch with family and friends, or becoming a member of a gym so that the carer can look after their own health.

It may be that the best way to meet a carer's needs is to provide care and support directly to the person that they care for, for example, by providing replacement care to allow the carer to take a break. It is possible to do this as long as the person needing care agrees.

d) Charging and financial assessment

In most cases local authorities do not charge for providing support to carers, in recognition of the valuable contribution that carers make to their local community. However, this is something that the local authority can decide. If the local authority does decide to charge a carer for providing them with support, it must carry out a financial assessment to decide whether the carer can afford to pay.

If supporting a carer involves providing care to the person being cared for, and the local authority chooses to charge for that type of care, then the authority must carry out a financial assessment of the person who is being cared for. This is because the care would be provided directly to that adult, and not to the carer. The Act makes it clear that in such cases, the carer cannot be charged. For more information about charging ( see factsheet 5).

e) Personal budgets

Carers should receive a personal budget, which is a statement showing the cost of meeting their needs, as part of their support plan. It will include the amount the carer will pay, if any, and the amount the local authority is going to pay ( see factsheet 4). Carers have a right to request that the local authority meets some or all of such needs by giving them a direct payment, which will give them control over how their support is provided.

f) Young carers

The Care Act does not deal with assessment of people under the age of 18 who care for others. However, they can be supported under the law relating to children. The Children and Families Act gives young carers (and parent carers) similar rights to assessment as other carers have under the Care Act.

Regulations under the Care Act set out how assessments of adults must be carried out to ensure the need of the whole family are considered. This could include assessing what an adult needs to enable them to fulfil their parental responsibilities towards their children, or to ensure that young people do not undertake inappropriate caring responsibilities.

g) Adults caring for disabled children

An adult caring for a disabled child can get support through children's services. This is usually the best way to meet their needs and so they are not covered by this Act. However, there is provision in the Act for an adult carer of a disabled child to ask for an assessment of their caring needs in advance of the child reaching 18. Where a local authority carries out such an assessment, it has the power to provide support to the carer even though they are caring for a child not an adult. This would, for example, enable a local authority to provide support that is available through an adult carers' centre.

h) Transition to adult services

The Act says that adult care and support needs to be involved in planning the support a young carer may need once they reach 18 (see factsheet 11). This also applies to adult carers of children where it appears likely that the adult carer will have needs for support after the child turns.

Factsheet 9: Continuity of care when moving between areas

Many disabled and older people can't consider moving to another area because they can't be sure that they will get equivalent levels of care and support in the new area.

Disability Rights UK

This factsheet describes how the Act supports people to move between local authority areas in England, without suffering a gap in the care they need when they arrive in the new area.

What is 'continuity of care'?

'Continuity' means making sure that, when an adult who is receiving care and support in one area of England moves home, they will continue to receive care on the day of their arrival in the new area. This means that there should be no gap in care and support when people choose to move.

Why do we need to change the law?

People with care and support needs will sometimes want to move to a new area, just like anyone else - for instance, to get a new job, or to be closer to family.

The law previously did not provide protection for people who want to move to a different area. People often say that this made them less likely to move, because they were worried that they might lose their care and support in the new area.

What does the Act do?

The Act describes a process to be followed so that local authorities know when someone wants to move areas, and what must happen to make sure that their needs are met when they arrive in the new area. This applies in a number of circumstances:

an adult is receiving care and support from one local authority, and wants to move to a new area

an adult is receiving care in a type of accommodation (e.g. a care home), which is organised by a different local authority

to the one where the accommodation is located. The person wants to leave the care home but stay in the local area; and

from financial year 2020 to 2021, an adult is arranging their own care and support, but has a 'care account' because the costs of meeting their eligible needs count towards the cap on care costs (see factsheet 6)

Notifying before moving

In any of these circumstances, the adult (or someone on their behalf) must tell the local authority where they plan to move (the 'second authority') of their intentions.

After the second local authority has been informed, and it is satisfied that the intention to move is genuine, it must then inform the 'first authority'. The 'first authority' is the local authority where the adult is currently living, or which is responsible for their care and support at that time.

The second authority may take steps to make sure that the person wants to move to their area, for instance, by speaking to them about their intentions.

Sharing information

When the first authority is informed that the adult is moving, it must do a number of things:

It must provide a copy of the adult's care and support plan, so that the second local authority knows what the adult's needs are

In the future:

If the adult has a carer who will continue to care for the adult after the move, the first authority must also provide a copy of the carer's support plan.

When it receives this information, the second authority must carry out its own assessment of the adult's needs. If a carer is moving with the adult, then the second authority must also assess the needs of the carer.

Both assessments can take place before the adult moves to the new area, to help ensure that the right care and support is in place when they arrive.

Adults' needs may change when they move home. For instance, if they are nearer to family, they may have more sources of support. Alternatively, being in a new place may mean that they have new needs. It is important that the new local authority assesses them, so that the person receives the right care and support for their needs.

If the second authority finds any needs which are different to those identified by the first authority (and in the care and support plan or most recent assessment provided), it must explain in writing why that is the case.

The first authority must keep in contact with the second authority to keep track of progress on putting services in place, and it must keep the person informed about the contact and involve them in this part of the process.

The day of arrival

The above assessments should mean that the second authority will know about the adult's needs before they arrive and will have services in place for the day of the move.

If on the day of the move the local authority has not carried out the assessments, for example because it wants to assess the person in their new home, or if they have not yet put in place care and support, then the 'continuity duty' is triggered.

This requires the second authority to meet any of the needs that were being met by the previous (first) authority, from the day that the person arrives in the new area. (This also applies to the needs of any carer who will continue to care for the adult after the move). The second authority will use the information shared in the care and support plan or recent assessment to decide what services to put in place to meet those needs.

The continuity duty continues until the second authority has carried out its own assessment and put in place all necessary care and support on the basis of that assessment. This should ensure that that people won't experience any gap in their care.

Factsheet 10: Market oversight and provider failure

Ensuring continuity of care should care businesses fail and there be a risk of services stopping.

This factsheet describes how the Act introduced a regime to oversee the financial stability of the most hard-to-replace care providers, and to ensure people's care is not interrupted if any of these providers financially fail and services stop. It also describes the responsibilities of a local authority if a local care provider fails.

What happens when a care provider fails?

There is a diverse market for care services in England. Public, private and voluntary sector organisations can all provide these services.

As is the case in any market, providers may leave from time to time, sometimes because they have failed financially. Their care services may well be sold to or taken over by another provider. This process is usually managed in an orderly way that does not cause disruption for the people receiving care. However, there can on occasion be disorderly failures, which happen quickly or with little warning and which can threaten the continuity of services for the people who need them and cause great anxiety.

What was the problem with the old system?

Prior to the Care Act, the laws dated from 1948, when care was provided and managed very differently. There are now many large care providers that serve much of England. A diverse number of public, private and voluntary sector organisations have grown to provide good quality care to the population.

When a large, national or specialist care provider fails, it may impact on numerous local authorities. This might create problems for people receiving care and support from that provider if the situation is not well-managed.

When a provider that provides care to many people fails, a local authority might find it difficult to make any necessary alternative care arrangements.

Previously, there was no formal system in place for checking how well a care provider was managing its own finances. This meant there was no 'early warning' that this could become an issue, nor anything in place to help resolve the problems it might cause.

The failure in 2011 of Southern Cross, a major care provider, highlighted these issues. It is unacceptable for people to be left without the care services they need. The interruption of care services, or the worry that this might happen, can affect people's wellbeing and cause stress to them, their families, friends and carers.

What does the Act do?

a) Managing provider failure locally

The Act gives local authorities clear legal responsibilities where a care provider fails. It makes it clear that local authorities have a temporary duty to ensure that the needs of people continue to be met should their care provider become unable to continue to provide care because of business failure, no matter what type of care they are receiving. Local authorities have responsibilities to all people receiving care, regardless of whether they or the local authority pay for that care, or whether it is funded in any other way.

Should a care provider fail financially and services cease, the local authority must take steps to ensure that all people receiving care do not experience a gap in the services they need. For some people, that may only require the provision of information and advice on alternative services available locally, to help them choose a new provider.

For others, it may require active arrangement of care with a different provider for a period of time, to ensure continuity. The steps will depend on the circumstances of the provider failure and the nature of support the person wants from the authority.

This duty applies temporarily, until the local authority is satisfied that the each person's needs will be met by a new provider or in a different way. The local authority may make a charge for arranging care and support in these situations.

b) Market oversight

The Act established a new role for the Care Quality Commission ( CQC) ,the independent regulator for health and care services in England. The CQC now has a responsibility for assessing the financial sustainability of certain 'hard-to-replace' care providers.

These are care providers which, because of their size, concentration or specialism, would be difficult to replace were they to fail and so where the risks posed by failure would be highest for individual local authorities.

To decide which providers CQC should oversee, regulations include criteria which set out which providers should be included in the regime. These criteria determine whether a provider would be 'hard to replace'; they do not reflect whether or not a provider is likely to fail.

There are different criteria for care home operators and for other providers of care and support. Should it be needed, regulations can also specify particular providers to be included in the regime, irrespective of whether they would meet the entry criteria.

To assess financial sustainability, the Act gives the CQC the power to request information from any provider in the regime. Regulations also allow CQC to request information from other companies in the same group, where this is relevant to assessing the finances of the provider itself.

The Act allows CQC to request that a provider which it judges to be in financial difficulty should develop a sustainability plan and, where needed, arrange an independent business review.

This is intended to help the care provider to remain financially sustainable, so that the care it provides to people is not disrupted.

CQC 's role is to oversee the provider's plans to remedy the situation and, if failure is judged to be likely, to inform the local authorities affected, to help them to deliver their duties to ensure continuing care to individuals.

The CQC 's aim is not to stop providers failing at all costs or to bail out providers in difficulty or interfere with any commercial discussions surrounding the likely failure.

Further details about how market oversight operates can be found on the Care Quality Commission's website.

Factsheet 11: Transition for children to adult care and support

Services at transition should be aimed at moving a person into work/adult life in such a way as to promote their independence and so reduce their long term needs for care and support.

Care and Support Alliance

This factsheet describes how the Care Act supports people moving from children's to adult care and support services.

We know that the transition to adulthood is a time when young people and their families are thinking about their aspirations for the future. If people are likely to have care and support needs when they are 18, they need information and advice so that they can make the necessary plans.

Planning for transition

The Act says that if a child, young carer or an adult caring for a child (a 'child's carer') is likely to have needs when they, or the child they care for, turns 18, the local authority must assess them if it considers there is 'significant benefit' to the individual in doing so. This is regardless of whether the child or individual currently receives any services.

When either a child or a young carer approaches their 18th birthday, they may ask for an assessment. A parent or carer may also ask for an assessment as the child they are caring for approaches 18.

As in all assessments, local authorities will need to consider the needs of the person, what needs they are likely to have when they (or the child they care for) turn 18, and the outcomes they want to achieve in life. They should consider what types of adult care and support might be of benefit at that point, and also consider whether other options beyond formal services might help the individual achieve their desired outcomes.

What information will someone receive?

The Act says that when an assessment is carried out, information should be given about whether the young person, child's carer or young carer is likely to have eligible needs for care and support when they turn 18 (see factsheet 3). The person should receive advice and information about what can be done to meet or reduce the needs they are likely to have, as well as what they can do to stay well, and prevent or delay the development of future needs.

This information will give young people, child's carers and young carers an indication of the sort of support they can expect. This will remove some of the uncertainty caused by having to wait and see what will happen when they turn 18.

If a person asks for an assessment but the local authority decides not to carry out an assessment, it must explain in writing why it has reached that decision. In any event, it must also provide information and advice about what the person can do to prevent or delay the development of care and support needs.

When does planning start?

The Act does not say that the child or young person has to be a certain age to be able to ask for an assessment. It says that local authorities must consider, in all cases, whether there would be a 'significant benefit' to the individual in doing an assessment.

This means the local authority is able to take each individual's circumstances into account when deciding whether to assess them. This is instead of having a blanket rule that means everyone has to be assessed at the same age. This flexibility recognises that the best time to plan the move to adult services will be different for each person.

Ensuring there is no gap in services

When a local authority assesses a child (including a young carer) who is receiving support under legislation relating to children's services, the Act requires them to continue providing him or her with that support through the assessment process.

This will continue until adult care and support is in place to take over - or until it is clear after the assessment that adult care and support does not need to be provided. These changes will mean there is no 'cliff-edge' where someone reaching the age of 18 who is already receiving support will suddenly find themselves without the care and support they need at the point of becoming an adult.

Working with other organisations

A successful transition to adult care and support needs the young person, their families and professionals to work together. This is crucial. The Act gives local authorities a legal responsibility to cooperate, and to ensure that all the correct people work together to get the transition right.

The Act makes clear that the local authority can combine any of these 'transition' assessments with any other assessment being carried out for some other person (provided all parties agree). If an external organisation (such as a hospital) is carrying out an assessment of the individual or a relevant person, for example, the individual's carer or someone the individual cares for, around the same time as the local authority's assessment, the local authority can carry out that assessment jointly with the other organisation or on behalf of the other organisation. This allows for sensible and flexible combinations of assessments, which is in everyone's interest. Transition assessments could also potentially become part of a child or young person's Education, Health and Care plan (see below).

The Care Act (and the special educational needs provisions in the Children and Families Act) requires that there is cooperation within and between local authorities to ensure that the necessary people cooperate, that the right information and advice are available and that assessments can be carried out jointly.

The Children and Families Act

The Children and Families Act creates a new 'birth-to-25 years' Education, Health and Care Plan ( EHC) for children and young people with special educational needs , and offers families personal budgets so that they have more control over the type of support they get. In some cases, where a person is over 18, the 'Care' part of the EHC plan will be provided for by adult care and support, under the Care Act.

The Children and Families Act also improves cooperation between all the services that support children with special educational needs and their families. This requires local authorities to involve children, young people and parents in reviewing and developing care for those with special educational needs. Local authorities will also need to publish information about what relevant support can be offered locally.

Factsheet 12: Prisoners and people in resident in approved premises

The difficulties that older prisoners face in the physical environment have been exacerbated by social care that is described variously as variable, sparse and non-existent; there has been a deplorable absence of basic personal social care, for example for prisoners with serious mobility problems, and no one seems sure who has been responsible for its provision.

House of Commons Justice Committee, Fifth Report of Session 2013/14, Older Prisoners

This factsheet describes how the Act sets out local authorities' responsibilities for arranging and funding services to meet the care and support needs of adults who are detained in prison or who are resident in approved premises.

Context

A number of the people who are in prison or living in approved premises on licence will have a need for care and support.

Social care services are important for people in the criminal justice system who have care and support needs. It supports their rehabilitation and may positively impact on the likelihood of reoffending and the person's ability to rebuild their lives on release.

Why have we changed the law?

Before the Care Act came into law, it was not clear about whether or which local authorities were responsible for providing care and support for prisoners and people living in approved premises. This meant that very few prisoners with care and support needs were having these needs properly assessed or met in an effective way.

For prisoners who have care and support needs before they enter prison, services can sometimes stop once they enter prison. Other prisoners may not have had their needs identified before entering prison or may develop care and support needs during their sentence. Not receiving care and support may impair their ability to take part in meaningful activities, impact negatively on rehabilitation and increase the risk of their reoffending on release.

Reports by HM Chief Inspector of Prisons, the Prison and Probation Ombudsman and the Prison Reform Trust have all criticised the quality of social care provision in prisons.

What does the Care Act do?

The Act makes clear where the responsibility lies for assessing the care and support needs of prisoners and people in approved premises, and providing care and support where those needs meet eligibility criteria.

The Act states that it will be the local authority where the prison or approved premises is located which is responsible. This means assessing whether someone has care and support needs and what those needs may be. After the assessment, the local authority must then determine whether the person is eligible for care and support using the same eligibility framework used for people living in the community. If they are assessed as having needs that meet the eligibility criteria, the local authority will meet those needs.

Just like people living in the community, prisoners and people in approved premises will have to pay part or the full cost of their care, if they can afford to do so.

Prisoners frequently transfer between prisons due to the progression of their sentence, changes in security category, or in preparation for release. If a prisoner is receiving care and support, the Act will ensure that there will be continuity of care in the next prison.

People leaving prison often experience difficulties in preparing for release. The local authority where the prisoner is located may carry out an assessment of the care and support they will need to support their release into the community. The Act will ensure that there will be continuity of care on release.

Whilst the Act will ensure that prisoners and people in approved premises will be entitled to care and support largely in the same way as people in the community, there will be instances where the care and support legislation will not apply to them.

Prisoners will not have the same choice in arranging their care as people not in prison and will not be entitled to direct payments for their care and support. However, this exclusion does not apply to those who have not been convicted of an offence, for example some people in bail accommodation.

Prisoners will not be able to express a preference for particular accommodation except when this is being arranged for after their release from prison or approved premises.

Some prisoners provide care for other prisoners, helping them in their day-to-day life. The Act gives local authorities a responsibility to assess a carer's own needs for support. However, the Care Act clarifies that people will not be regarded as carers if they provide care as part of voluntary or paid work - almost all care provided by prisoners is expected to fall within these exclusions.

Local authorities will not have to protect the property of adults in prison or approved premises with care and support needs.

Prisons and approved premises will still be responsible for the safety of their detainees. This means that Safeguarding Adults Boards do not have a duty to carry out enquiries or reviews where a prisoner with care and support needs may be, or have been, at risk of abuse and neglect. Safeguarding Adults Boards can provide advice and assistance on safeguarding to prison governors and other officials and can invite prison staff to be members.

For further information, see also:

Factsheet 13: Appeals Policy Proposals

The Local Government Association argued that the failure to address issues relating to the ways in which people might seek redress 'is an omission'. Similarly, Hull City Council noted that 'there appears to be a lack of potential dispute resolution within the prescribed legislation' and suggested that this can lead to 'costly challenges'.

Law Commission consultation on Care and Support, March 2011

This factsheet describes how our appeals policy proposals set out the process of appealing certain decisions taken by local authorities in relation to an individual under Part 1 of the Care Act 2014.

Why have an appeals system?

The lack of a formalised appeal structure within care and support was highlighted in consultation responses as well as in debates when the Care Act 2014 progressed through Parliament.

The government acted and amended the Care Act to include powers to introduce an appeals system under which decisions taken by a local authority under Part 1 of the Care Act 2014 might be challenged.

Care and Support decisions have a large impact on people's quality of life. It is therefore important that where people feel an incorrect decision may have been made in relation to their care and support they have an effective means to have the decision reviewed.

What is the aim?

Good communication can help prevent misunderstandings on both sides. By talking through the issues, the local authority can understand if they've missed anything and the person can also understand why a decision was reached rather than just simply what the outcome decision is.

The proposals aim to promote good communication between people seeking to make an appeal and the local authority to resolve any disputes that emerge as efficiently as possible. They promote the principles of early resolution, good communication, fairness, equality, independence, accessibility and proportionality.

The appeals process has been designed with the aim of resolving disputes in a less costly and time consuming manner compared with legal routes of challenging decisions.

What is the process?

The proposals put forward a 3 stage process, with the emphasis on early resolution wherever possible. First, there's the early resolution stage, where the local authority facilitates open and constructive dialogue with the person making the appeal, with the aim of achieving a prompt resolution.

If early resolution is not reached, the appeal progresses to the second stage. This is the independent review stage; where the local authority appoints an independent reviewer. The reviewer will review the local authority's original decision and make a recommendation as to whether they consider that decision was correct.

The third and final stage of the process is the authority decision. This is where the local authority makes a decision considering the Independent Reviewer's recommendation.

What are the timescales?

The broad framework sets out that the early resolution and the independent review stage should take approximately up to 30 working days each to complete. However, this time period can be extended where the person's involvement is delayed for ill health or the appeal is complex.

The process intends that people can lodge an appeal up to 12 months from the local authority's original decision. However, local authorities have the discretion, if they wish to do so, to consider an appeal beyond the 12 month time limit.

Who can lodge an appeal?

An appeal may be made by the person with or without support; or the appeal may be made on an individual's behalf by someone else: a family member, a friend, or anyone who has the consent of the person (if they have capacity to consent), or who are doing so in their interest (if they lack capacity).

An appeal may also be made by an independent advocate appointed under section 67 of the Care Act 2014 for people who have substantial difficulty in being involved with assessments, care planning or care reviews; it may be an independent advocate appointed under the Mental Capacity Act, or any other independent advocate.

Implementation of appeals policy

The government plans to implement the appeals policy from April 2020. During the interim period, we will develop the policy to respond to the key issues identified during the consultation held in 2015. This will also allow local authorities sufficient time to prepare for implementation and appoint the independent reviewers.

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Information, information, information - without it, how can people be truly at the heart of decisions? Information should be available to all regardless of how their care is paid for. There are some things that should be universal - information is one.

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Parents with mental health problems and their children

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Parents with mental health problems and their children

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http://www.communitycare.co.uk/2008/03/19/parents-with-mental-health-problems-and-their-children/

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paid parental leave elusive 25 years after family and medical leave act - cnn

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Paid parental leave still eludes Americans

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Research and new mothers agree that inadequate paid leave policies negatively impact mental health.

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Quality statement 1: Including physical and mental health needs in a care and support needs assessment

Quality statement

Older people with multiple long-term conditions having a care and support needs assessment have their physical and mental health needs included.

Rationale

Older people with multiple long-term conditions are likely to have complex needs. Having the opportunity to discuss physical and mental health needs when having a care and support needs assessment will ensure that all their health and social care needs are identified and will enable them to access the support they need to improve their quality of life and maintain their independence. Taking into account the person's strengths, needs and preferences, the assessment will enable health and social care practitioners to work together to meet the person's needs.

Quality measures

Structure

Evidence of a locally coordinated approach to ensure that older people with multiple long-term conditions having a care and support needs assessment have their physical and mental health needs included.

Data source: Local data collection.

Process

Proportion of care and support needs assessments for older people with multiple long-term conditions that include physical and mental health needs.

Numerator - the number in the denominator that include physical and mental health needs.

Denominator - the number of care and support needs assessments for older people with multiple long-term conditions.

Data source: Local data collection.

Outcome

Satisfaction among older people with multiple long-term conditions and social care needs that all their health and care needs are identified and understood.

Data source:Local data collection.

What the quality statement means for service providers, health and social care practitioners, and commissioners

Service providers (such as local authorities, general practices, and community care providers) ensure that arrangements are in place for relevant health and social care practitioners to contribute to care and support needs assessments for older people with multiple long-term conditions, and that the assessment includes the person's physical and mental health needs.

Health and social care practitioners (such as social workers, occupational therapists, GPs, geriatricians, district nurses and mental health nurses) contribute to care and support needs assessments for older people with multiple long-term conditions, ensuring that their physical and mental health needs are included.

Commissioners (such as local authorities, clinical commissioning groups and NHS England) ensure that systems are in place for providers to work together so that physical and mental health needs are included when care and support needs assessments are carried out for older people with multiple long-term conditions.

What the quality statement means for people using services and carers

Older people with more than 1 long-term condition have their physical and mental health needs included when they have a care and support needs assessment. This will help them and their carers (if appropriate) to think about what they can manage for themselves and what they need help with in their day-to-day life.

Definitions of terms used in this quality statement

Multiple long-term conditions

A long-term condition is defined as one that generally lasts a year or longer and impacts on a person's life. Examples include arthritis, asthma, cancer, dementia, diabetes, heart disease, mental health conditions, stroke, and hearing and sight loss. Multiple means a person has more than 1 condition. The impact and symptoms of these conditions can fluctuate, and people may or may not need to take medicines for their conditions.

[NICE guideline on older people with social care needs and multiple long-term conditions]

Care and support needs assessment

The process by which a local authority works with a person to identify their needs and the outcomes they would like to achieve to maintain or improve their wellbeing. The local authority's aim is to determine how it should respond to meet the person's needs under the Care Act 2014. It may also be known as a social care needs assessment.

[NICE guideline on older people with social care needs and multiple long-term conditions and expert opinion]

Equality and diversity considerations

People with communication difficulties, or hearing or sight loss should be offered support to enable them to be involved in their care and support needs assessment.

People with limited independence as a result of a physical disability or mental health condition may need additional support, such as an advocate, to enable them to be involved in their care and support needs assessment.

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Social care for older people with multiple long-term conditions

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Older people with multiple long-term conditions having a care and support needs assessment have their physical and mental health needs included. Older people with multiple long-term conditions are likely to have complex needs.

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A combination of societal and legislative changes have made the lives of individuals with disabilities and their families more comfortable in comparison to the way things were throughout history. From educational to industrial institutions, the accommodations and sensitivity offered to individuals with disabilities have created a less restrictive and more accessible environment. Families of individuals with disabilities have also gained attention and now have an array of services provided for their education and support.

However, there is one member of the overall family system who has been neglected as part of the effort to attend to disability issues: namely, the siblings of those with disabilities. As I have argued in multiple venues, sibling issues in general is an area that has been neglected in research, application, and the law despite the fact that siblings play an integral role in the lives of people throughout life. This neglect of sibling issues is even starker when examining the attention given to siblings in overall disability services.

To begin shedding some light on this problem, allow me to present several common issues faced by siblings of children with disabilities:

SIBLINGS MAY DEVELOP MULTIPLE DIFFICULTIES

Siblings of children with disabilities are at a greater risk than average of developing emotional issues, anxiety, and stress. These problems are known as internalizing issues, not obviously visible, and may be an attempt by these siblings to hide their problems; they may want to be well-behaved or protect their already overburdened parents. Other issues that these siblings may face are peer problems, as well as a lack of engagement in extracurricular activities and academic issues as a result of limited time and money.

SIBLINGS BECOME OVERLY RESPONSIBLE AND INDEPENDENT

Considering the attention given to the child with the disability, siblings may neglect their own issues. In some cases, siblings experience parentification where they are expected to have many responsibilities for themselves and their sibling, developing duties similar to those of a parent and overlooking their need to act like children. This responsibility may seem positive to parents but may actually be precursors to emotional distress.

SIBLINGS MAY FEEL NEGLECTED BY PARENTS

The family focus on the child with the disability may take away from the attention desired by the sibling. Time spent on medical and therapy appointments for the child with the disability limits the amount of time parents can spend with the other siblings resulting in their feeling neglected. Furthermore, parents may spend a great deal of emotional energy on the child with the disability leaving little emotional energy to support the sibling.

SIBLINGS FEEL IN THE DARK FROM PARENTS AND SERVICE PROVIDERS

Siblings may have similar questions about the sibling with the disability as do parents but have little information or resources available to them. During doctor visits, they are often left in the waiting room. Parents may want to keep well siblings away from the treatment environment or may want to protect the privacy of the sibling with the disability leaving the well sibling feeling in the dark about what is going on with their sibling. They may have many unanswered questions about their sibling including whether their disability can be transmitted and what will be in the future. With little or no information, siblings may develop their own ideas about what is happening, often much worse than is actually true.

SIBLINGS EXPERIENCE MIXED EMOTIONS

Sibling may experience a range of emotions about their situation. They may feel guilt wondering if they caused the disability of their sibling or they may feel guilt about why the disability did not happen to them. They may feel fear about the health of their sibling or about what may happen to their sibling in the future. Siblings may also experience resentment, anger, or jealousy towards their sibling considering the attention and resources expensed on their sibling. An additional common feeling is embarrassment as a result of the behaviors and appearance of their sibling. In some cases the embarrassment may be so great that they disassociate from the sibling with the disability. They may claim to be an only child or may not invite over friends so that they do not have to answer questions about their sibling.

SITUATION PROVIDES OPPORTUNITIES FOR SIBLINGS

Beyond what is known as the pathogenic perspective, which highlights the difficulties associated with having a sibling with a disability, this difficult circumstance may also offer some opportunities for siblings. These siblings often develop certain positive characteristics such as self-control, cooperation, empathy, tolerance, altruism, maturity, and responsibility as a result of dealing with their family situation. They may develop loyalty and a protective attitude towards their sibling. In some cases these siblings use someone's attitude about special needs as a test for screening friends and mates. Their involvement with their sibling may even lead them to choose future occupations in the helping professions.

I see first hand at my university the great strides that have been accomplished in offering an environment that offers everyone a chance to succeed regardless of limitations. I am inspired by the great work of our university's office of disability services in caring for the needs of all students. This great work is being replicated in many industries and institutions across the country. Focusing on some of the unique issues faced by siblings of individuals with disabilities is an important step in the continuous work that is being done in disability services overall. I hope to highlight this focus in future columns about variations in how siblings experience the above outcomes and some recommendations that can be used by families and service providers in helping these brave and burdened siblings.

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A combination of societal and legislative changes have made the lives of individuals with disabilities and their families more comfortable in comparison to the way things were throughout history. From educational to industrial institutions, the accommodations and sensitivity offered to individuals with disabilities have created a less restrictive and more accessible environment.

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Medicare Information, Help, and Plan Enrollment - Medicare.com

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This article was updated on: 07/06/2017
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In California, if a family member is no longer able to make decisions about his or her personal or financial affairs, a judge may be able to appoint someone to care for this person. If the person is an adult, the process is called "conservatorship;" in the case of a minor child, it is usually referred to as "guardianship," according to the California Judicial Branch website. If you believe a loved one needs this type of legal protection, here's what you should know about conservatorship in California. The information in this article is about California only and does not necessarily apply to any other state.

Exactly what is a conservator in California?

A judge may grant conservatorship to one or more individuals or agencies. As a conservator, you have the responsibility and decision-making authority to manage the affairs of someone whom a judge has determined incapable of handling his or her personal care or finances, according to the Judicial Branch of California.
There are two main types of conservatorships, according to the Judicial Branch of California:

Probate conservatorship, where the conservator is granted authority to manage the financial and/or personal matters of another individual (called the conservatee). This can be a "general" or "limited" conservatorship; typically the conservatee in a general conservatorship needs a higher level of care than one in a limited conservatorship. A probate conservatorship can be temporary until a general conservator can be appointed.

Lanterman-Petris-Short (LPS) conservatorship, which is initiated by a local government agency, is used when a person is severely mentally ill and cannot or will not consent to treatment and intensive care. It lasts for a year; the court must reappoint a conservator if it determines one is needed into the following year.

The Judicial Branch website says a conservator may make decisions about, and provisions for, the conservatee's:

Housing, clothing, meals, health care, personal care, transportation, recreation, and general well-being

Income, assets, investments, bills, budget, and overall financial affairs
The conservator is usually required to make regular reports to the court about the conservatee's status and account for any financial assets under supervision.

How is a conservatorship established?

Establishing a conservatorship is a complex process, reports the Judicial Branch of California. A family member, friend, or representative of the state files a petition with the court requesting that a conservator be appointed for an individual. The petition lays out the reasons why the individual is no longer competent to make decisions for himself. A court investigator will then interview the proposed conservatee and verify the facts contained in the petition, after which he or she will make a recommendation to the court whether the petition is justified.
At this point, the proposed conservatee and family members are typically notified of the petition hearing. The conservatee must appear in court unless he or she is medically unable to attend. After hearing the testimony and viewing the evidence, the judge determines whether to establish a conservatorship. The conservator must go to training classes. A court investigator will meet with the conservatee periodically to make sure the conservatorship is still necessary.
California law requires every conservator to be given a copy of the Handbook of Conservators.

Who can be a conservator?

The choice of conservator is in the hands of the judge, who should act in the best interests and welfare of the proposed conservatee, says the Judicial Branch of California website. In some cases, the person filing the petition is also the one appointed conservator, but this is not always the case. Generally, the court's order of preference in appointing a conservator, provided each is willing and equally qualified to serve, is:

The conservatee's spouse or domestic partner

An adult child

A parent

A sibling

Any adult approved for this purpose by the court

A public guardian

Are there alternatives to a conservatorship?

Before you petition for conservatorship, says the Judicial Branch website, you must be absolutely certain that no other legal remedy will work for the person who needs help. Alternatives to explore before beginning the process might include any of the following, depending on the situation (this is not a complete list):

It's important to keep in mind, however, that laws vary by state, and this article is specifically about conservatorship in California.
Note: This article is for general information only, and is not legal advice. You should consult with your own legal counsel to make sure any actions or legal documents fit your particular situation and jurisdiction.
Are you, or is your loved one, eligible for Medicare? If you have questions about Medicare plan options, I'd be happy to find answers for you. You can schedule a phone call or request information in a personal email by clicking one of the buttons below. You can learn more about me by clicking the "View profile" button below. To find out more about plans in your area that you may qualify for, click the "Compare plans" link. You can also get immediate assistance by calling me or another licensed insurance agent at 1-844-847-2660 (TTY users can call 711) Monday through Friday, 8AM to 8PM ET.
For more information, see the Judicial Branch of California website.
This article is for general information only and may not apply to your circumstances. This article should not be used as a substitute for professional medical advice. You should always consult with your medical provider regarding diagnosis or treatment for a health condition, including decisions about the correct medication for your condition, as well as prior to undertaking any specific exercise or dietary routine.
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What is a Conservatorship in California?

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In California, if a family member is no longer able to make decisions about his or her personal or financial affairs, a judge may be able to appoint someone to care for this person.

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Conservatorships in California allow an adult to legally care for another adult who is unable to care for him/herself. In California, a conservatorship may be established for adults, and, in some instances, married or divorced minors. A conservatorship is a court process whereby the judge gives an individual the right to control another adult, their property, or both. To become a conservator for another individual, you must file a petition and the court has to approve it.

If the court orders a conservatorship, it can be:

A conservator of the PERSON is responsible for making sure that the conservatee has proper food, clothing, shelter and health care. The conservatee may live with the conservator or elsewhere.

A conservator of the ESTATE is necessary if the conservatee has substantial assets and income and cannot manage them alone or, if the conservatee is susceptible to being taken advantage of financially by others. Depending on your situation, you may need a conservatorship of the person, the estate, or both.

A conservatee does not lose all rights. They can still have a say in important decisions. They have the right to:

In general, conservatees keep the right to:

1. Control their own salary;

2. Make or change their will;

3. Get married;

4. Get mail;

5. Have a lawyer;

6. Ask a judge to change conservators;

7. Ask a judge to end the conservatorship;

8. Vote, unless a judge says they're not able to;

9. Control personal spending money if a judge says they can have an allowance; and

10. Make their own healthcare decisions, unless a judge gives that right to a conservator.

A California conservatorship must be formally established and ended by a court. After documents have been filed with the court then a court investigator conducts an investigation, a hearing date is set and a judge decides whether or not to appoint a conservator. During the conservatorship, a conservator must periodically give the court information about the assets in the estate and how they are being handled. A clear description of a conservator's responsibilities and duties are outlined in the Conservatorship Handbook published by the Judicial Council of California.

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Conservatorships in California Establishing a conservatorship in California requires the filing of formal legal proceedings. The paperwork and process is quite complicated and involves several steps.

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Helping someone with a mental health problem

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Find out how you can support someone you care about with a mental health problem. Our information also covers support for your own wellbeing.

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Staff and agencies

Carers should be routinely screened for depression and mental health problems as they often "neglect" their own wellbeing, the Royal College of General Practitioners has warned.

The college has recommended creating a register of the UK's 7 million carers to help the 40% of them who experience depression or psychological problems.

It said holding routine appointments with carers and ensuring family doctors monitor those on a carers' register could tackle the "hidden" problem.

Dr Clare Gerada, RCGP chairwoman, told BBC Breakfast: "Carers often neglect their own healthcare needs and in many cases it is only a matter of time before they themselves become ill. They are at risk physically and emotionally with stress-related illnesses but it can be hard for them to admit that they are struggling.

"Unfortunately at the moment as with the rest of the health service, GPs are heaving under the workload and what this report is saying is that we have to target resources where they are most needed and they are most needed with carers."

Gerada said carers were a "critical asset" who should be protected as "they already save the public purse £119bn a year".

She said: "If carers fall ill you lose two patients. You lose the person they are caring for and also the carer so it makes financial sense to keep carers well."

The RCGP has drawn up a nine-point checklist as part of new online guidance which also includes appointing a carers' "champion" in all GP surgeries, and carrying out audits to measure improvements in carer support.

* The headline on this article was amended on 11 May 2013. The original referred to care workers, instead of carers.
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Carers should be monitored for mental health problems, warn doctors

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Staff and agencies Carers should be routinely screened for depression and mental health problems as they often "neglect" their own wellbeing, the Royal College of General Practitioners has warned.

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Implications for the Family

Living with a disabled child can have profound effects on the entire family-parents, siblings, and extended family members. It is a unique shared experience for families and can affect all aspects of family functioning. On the positive side, it can broaden horizons, increase family members' awareness of their inner strength, enhance family cohesion, and encourage connections to community groups or religious institutions. On the negative side, the time and financial costs, physical and emotional demands, and logistical complexities associated with raising a disabled child can have far-reaching effects as we describe below. The impacts will likely depend on the type of condition and severity, as well as the physical, emotional, and financial wherewithal of the family and the resources that are available.

For parents, having a disabled child may increase stress, take a toll on mental and physical health, make it difficult to find appropriate and affordable child care, and affect decisions about work, education/training, having additional children, and relying on public support. It may be associated with guilt, blame, or reduced self-esteem. It may divert attention from other aspects of family functioning. The out-of-pocket costs of medical care and other services may be enormous. All of these potential effects could have repercussions for the quality of the relationship between the parents, their living arrangements, and future relationships and family structure. Having a disabled child may also affect parents' allocation of time and financial resources to their healthy and unhealthy children, their parenting practices, their expectations of healthy siblings in terms of achievement, responsibility, and short- and long-term contributions to the household, and the siblings' health and development. Finally, having a disabled child in the family may affect the contributions of time and financial resources on the part of the child's grandparents or other extended family members, the relationships of those individuals to the core family, and the financial, physical, and emotional well-being of those family members. All of these potential effects on families have implications for the health and well-being of disabled children.

Surprisingly little is known about the ripple effects of child disability on the family. Population-based research, particularly on demographic or economic outcomes, is scant. Existing studies indicate that having an infant with a serious health condition or health risk increases the likelihood that parents divorce or live apart; that the mother does not work outside of the home; and that the mother relies on public assistance. It also leads to a reduction in the father's work hours. Another study found that parents with disabled children have lower rates of social participation than parents without a disabled child and that they are less likely to have large families.

Studies in the psychology literature indicate that a number of specific child health conditions are associated with poor mental health outcomes of parents and siblings. A recent meta-analysis indicates that peer activities and cognitive development scores are lower for siblings of children with a chronic illness compared to controls. Virtually nothing is known about siblings' long-term economic, demographic, and physical health outcomes. Another potentially important but under-explored area is how child disability affects the well-being of grandparents and other extended family members and how the responses of those individuals to having a disabled child in the family affect the child's parents. Yet another crucial gap involves the extent to which family characteristics and resources modify the effects of children's health status on families. A recent study found that low socioeconomic status and maternal depression increase the negative financial impacts and caregiving burdens associating with raising an extremely low birthweight infant. Overall, much more needs to be learned about how children's health affects their parents, siblings, grandparents, and extended family members.

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Impact of Child Disability on the Family

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Living with a disabled child can have profound effects on the entire family-parents, siblings, and extended family members. It is a unique shared experience for families and can affect all aspects of family functioning. On the positive side, it can broaden horizons, increase family members' awareness of their inner strength, enhance family cohesion, and encourage connections to community groups or religious institutions.

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"Mum was too poorly to get out of bed some days, so me and my big sister would do things around the house and look after the babies," says Maisy, 11.

"We made meals in the slow cooker so we'd have something to eat when we got back from school.

"We'd bath the babies and put them to bed, change their nappies."

Maisy and her sister, who help look after their three younger siblings, are young carers who the charity Barnardo's says are being let down by schools.

In a survey of 808 teaching professionals, Barnardo's found 34% thought there were young carers at their school who were not sufficiently supported.

And 29% of those polled said they didn't think their school had any particular ways of supporting young carers.

The charity says schools must do more to support young carers.

"I didn't tell any of my friends at school - it was no-one else's business," says Maisy.

"I was tired when I was at school but I knew what needed to be done so I got on and did it."

Her mother, Lindsey, who has been diagnosed with heart failure, says: "My girls were brilliant - making packed lunches, bathing the babies, helping me with my medication.

"I found myself crying a lot, I felt very low because I couldn't do the things for them that I wanted to as a mum.

"I felt proud that they knew what to do and stepped up but found it really hard to let them do the jobs that I felt I should be doing. I felt I'd let them down as a mum."

The family is now receiving help through Barnardo's action with young carers scheme.

Why is the charity concerned?

The charity fears too many children are having their futures held back because of their caring duties.

It says young carers carry out tasks such as cooking, cleaning and shopping, as well as providing intimate personal care, administering drugs and taking care of household finances.

Barnardo's chief executive Javed Khan says it's not acceptable that children are "having to sacrifice their futures to care for the ones they love".

"A quarter of the children supported by Barnardo's young carers' services are carrying out more than 30 hours a week of caring - that's the equivalent of a full-time job.

"It's clear from our research that there is a lack of awareness among teachers that needs urgently addressing.

"Schools need to take more responsibility to make sure young carers are properly supported."

What do teachers say about this?

Schools say it can often be very difficult for them to pick up on the signs that a child might also be a carer.

Paul Whiteman, general secretary of the National Association of Head Teachers, said: "For schools to support young carers effectively they need to be aware of their circumstances, which are often extremely challenging.

"These families can be some of the most isolated from the wider school community, making it harder to pick up the warning signs in the playground or at parents' evenings, for example."

Mr Whiteman said automatically registering children who are entitled to extra funding under the pupil premium scheme would potentially help young carers, who may also be in households on low incomes.

"This funding is specifically targeted at students who face challenges not unlike those faced by young carers.

"They should get this support automatically, particularly as the person they are caring for may not be able to apply for the money themselves.

"The additional funding would help schools to properly resource the ways in which they can identify and help young carers."

The Department for Education says it recognises the contribution young carers make.

Children and Families Minister Robert Goodwill said: "We know that schools play a very important part in identifying pupils who are young carers and offering them appropriate support.

"We have worked with the Children's Society and the Carers Trust since 2011 to share existing tools and good practice, supporting local authorities to work collaboratively with schools to better identify and support young carers and their families.

"The joint Carers Trust and Children's Society young carers in schools programme is important to help identify young carers among teachers, non-teaching staff and school nurses to ensure that individuals get the support they need and are able to live a full life beyond their caring responsibilities."

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"Mum was too poorly to get out of bed some days, so me and my big sister would do things around the house and look after the babies," says Maisy, 11. "We made meals in the slow cooker so we'd have something to eat when we got back from school.

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Psychological Distress in Carers of People with Mental Disorders | British Journal of Medical Practitioners

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1. Singleton, N., Maung, N. A., Cowie, J., et al. Mental Health of Carers. London: Office for National Statistics,2002.2. Oyebode JR.Carers as partners in mental health services for older people. Advances in Psychiatric Treatment.2005; 11: 297-3043. Magliano L., McDaid D., Kirkwood S. and Berzins K.

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Kirsty Scott

Carers are twice as likely to be suffering long-term illness and disability as the rest of the population, a study reveals today.

The survey, for Carers Scotland, found that 96% of unpaid carers had experienced a negative impact on their health because of their responsibilities, with more than a quarter rating their own health as poor or very poor. More than half had a long-term illness or disability, and two-thirds had experienced a range of physical problems.

The report, Sick, Tired, and Caring (pdf), which is published today, comes amid continuing publicity over the role of carers prompted by the case of Riven Vincent, who asked social services to take her severely disabled daughter Celyn into care because she could no longer cope with the demands of looking after her child.

Carers Scotland said the study had shown the human cost that caring can place upon individuals and is calling for a range of services to be made available to carers, including early intervention by GPs and other professionals, regular health checks, practical training and concessionary rates for sports and leisure services.

Almost half of those questioned for the study suffered from a significant illness, including diabetes, depression, or cancer. More than a third were suffering from arthritis, osteoarthritis or osteoporosis, and a third had high blood pressure. A total of 70% suffered from stress, and 34% suffered from exhaustion. Almost half reported that their conditions had started after they began caring. Of those whose condition predated their caring role, a quarter said it had worsened since they took on the extra responsibilities.

Patrick Begley, director of Carers Scotland, said health and social services relied heavily on the support provided by unpaid carers. In Scotland, there are some 660,000 carers, and Carers Scotland said the economic value of the work they do is around £7.6bn a year in Scotland, and £87bn across the UK as a whole.

"Despite this irreplaceable contribution, this study shows the real human cost that caring can place upon carers - stress, poor health and long-term illness and disability," said Begley.

"Information and support provided at an early stage is critical. This is often overlooked as carers do not have the time or backup to look after their own needs. This cannot be good for the carer and risks a breakdown of care, with the subsequent need for intervention by health and social care."

Fiona Thomson, 41, from Irvine in Ayrshire, is the sole carer for her 17-year-old son, Dean, who has ADHD and autism.

"I've had major stress. I also suffer from depression and anxiety because of my caring role," she said. "My health has deteriorated over the years and, unfortunately, they now think I may have lupus as well, which could be to do with the stress of caring for Dean."

Thomson used to get nine hours of respite care a month, but that was recently cut to six hours after Care Partners, the local charity that has supported her, had their funding cut by North Ayrshire council. Thomson is now spearheading a protest group against further cuts in public money to the charity, which could affect more than 100 families.

Anne*, 41, from central Scotland, cares on her own for her two daughters, aged 20 and 16, who have severe learning difficulties and require 24-hour care. Stress and exhaustion brought her almost to breaking point last year.

"It was at the point where if I didn't get more help, then something serious was going to happen. It was a really serious cry for help." Anne's respite care was increased from the three nights a month she was receiving. Now carers come every week from Friday to Sunday.

"I would say I'm feeling a bit better," she said. "It has given me a chance to think and focus on different aspects of the girls' lives now."

* * Not her real name
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Carers suffer more illness and disability, survey shows

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Kirsty Scott Carers are twice as likely to be suffering long-term illness and disability as the rest of the population, a study reveals today. The survey, for Carers Scotland, found that 96% of unpaid carers had experienced a negative impact on their health because of their responsibilities, with more than a quarter rating their own health as poor or very poor.

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UDW - The Homecare Providers Union - AFSCME Local 3930 / AFL-CIO

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A new president means a new administration and new policies. And new policies or changes to existing ones can have effects on the IHSS program. While we don't know what will happen yet, there are some things IHSS providers and recipients should be aware of as we continue our work to protect and strengthen California's home care program.

What could that mean for IHSS? Benefits and eligibility for Medicaid-funded programs like IHSS here in California could be cut if federal funding is reduced. Remember, 55 percent of funding for the IHSS program comes from Medicaid, so changes to Medicaid funding will be felt by providers and our clients.

What could that mean for IHSS? Right now, many UDW caregivers and our families are among the estimated 20 million people who get their health insurance through the ACA. Many of us receive subsidies through Covered California, or receive Medi-Cal through the ACA's expanded eligibility. In addition, California participates in the Community First Choice Option (CFCO), a program available through the ACA that provides increased funding to states who promote home and community based services like IHSS. Changing or repealing the ACA could mean reduced funding for IHSS and leave many of us without health coverage.

What could that mean for IHSS? If this happens, federal funding for overtime pay goes away. This likely means the State will stop paying IHSS providers overtime pay, as our law states that it's only required if authorized by federal law.

Congress and the President-elect could reduce funding for Supplemental Security Income (SSI) as part of broader changes to federal entitlement programs.

What could that mean for IHSS? The majority of our IHSS clients depend on SSI as their only or primary source of income. If SSI is cut, our clients' quality of life could suffer.

Because IHSS is funded by the state and federal government, its future is tied directly to what happens in Sacramento and Washington D.C. That's why we must be stronger together - to fight to protect our clients and loved ones in the face of these potential threats to our program.

UDW will keep you posted on how the recent election can and will affect providers, clients, and our families. Want to get involved in our efforts? Call your local UDW office today.

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How the IHSS program could be affected by a new president - UDW - The Homecare Providers Union - AFSCME Local 3930 / AFL-CIO

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A new president means a new administration and new policies. And new policies or changes to existing ones can have effects on the IHSS program. While we don't know what will happen yet, there are some things IHSS providers and recipients should be aware of as we continue our work to protect and strengthen California's home care program.

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Carers UK response to earnings limit rise

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Carers UK response to earnings limit rise

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27 November 2017

Carers UK has welcomed a rise in the earnings limit, but says carers are still being "trapped" by benefits rule. Carers UK has welcomed the Government announcement that from April 2018 the earnings threshold for Carer's Allowance will be raised to £120 a week as any increase can make some difference.  However, this still falls short of what is needed for those who need to work 16 hours in order to access other financial help from Government.
Each year, with the uprating of the National Living Wage, Carers UK hears from carers whose earnings rise over the earnings threshold by just a matter of pence and who are forced to choose between giving up work, reducing their hours or losing their benefits.

The earnings limit is currently £116 per week after deductions and will rise to £120 after deductions from April 2018.   If the carer earns even one pence over this rate after deductions they lose 100% of their main benefit, Carer’s Allowance, which will be worth £64.60 from next April 2018. While Carer's Allowance is the lowest benefit of its kind, it can help offset the extra costs of caring and the huge loss of earnings that many carers face.

For some carers, they need to work a minimum of 16 hours a week in order to access tax credits.   However, with the welcome rise in the National Living Wage rising to £7.83, this will take them over £5 per week over the limit and many carers again face the impossible situation of either cutting their working hours or losing thousands of pounds a year in financial support from Carer's Allowance. Emily Holzhausen OBE, Director of Policy and Public Affairs, said:
"Carers UK is pleased by the increase in the earnings threshold, which will allow carers to benefit from modest wage increases. However, this still falls around £5 short of what is needed for carers to retain working tax credits. Carers make a huge contribution to our society and many are forced to reduce their working hours or leave work altogether to care around the clock for older, disabled or seriously ill loved ones. For carers who are able to combine caring with a few hours of low paid work, the earnings limit has caused serious problems."
Carers often find it difficult to find jobs with the right number of hours that they are able to fit around their caring responsibilities, often turning down extra hours or promotion because they face losing essential support from Carer's Allowance. Carers also receiving Working Tax Credit are often hit the hardest. If they cut their working hours in order to stay under the Carer's Allowance earnings limit, they would instead lose thousands of pounds in tax credits.

Carers UK is also urging the Government to put in place a long-term solution so that this conflict does not arise again in the future. It is an opportunity for Government to include this change in the cross-Government Carers Action Plan which will be published in the New Year.

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Carers UK has welcomed a rise in the earnings limit, but says carers are still being "trapped" by benefits rule.

Carers UK has welcomed the Government announcement that from April 2018 the earnings threshold for Carer's Allowance will be raised to £120 a week as any increase can make some difference. However, this still falls short of what is needed for those who need to work 16 hours in order to access other financial help from Government.

Each year, with the uprating of the National Living Wage, Carers UK hears from carers whose earnings rise over the earnings threshold by just a matter of pence and who are forced to choose between giving up work, reducing their hours or losing their benefits.

The earnings limit is currently £116 per week after deductions and will rise to £120 after deductions from April 2018. If the carer earns even one pence over this rate after deductions they lose 100% of their main benefit, Carer's Allowance, which will be worth £64.60 from next April 2018. While Carer's Allowance is the lowest benefit of its kind, it can help offset the extra costs of caring and the huge loss of earnings that many carers face.

For some carers, they need to work a minimum of 16 hours a week in order to access tax credits. However, with the welcome rise in the National Living Wage rising to £7.83, this will take them over £5 per week over the limit and many carers again face the impossible situation of either cutting their working hours or losing thousands of pounds a year in financial support from Carer's Allowance.

Emily Holzhausen OBE, Director of Policy and Public Affairs, said:

"Carers UK is pleased by the increase in the earnings threshold, which will allow carers to benefit from modest wage increases. However, this still falls around £5 short of what is needed for carers to retain working tax credits. Carers make a huge contribution to our society and many are forced to reduce their working hours or leave work altogether to care around the clock for older, disabled or seriously ill loved ones. For carers who are able to combine caring with a few hours of low paid work, the earnings limit has caused serious problems."

Carers often find it difficult to find jobs with the right number of hours that they are able to fit around their caring responsibilities, often turning down extra hours or promotion because they face losing essential support from Carer's Allowance. Carers also receiving Working Tax Credit are often hit the hardest. If they cut their working hours in order to stay under the Carer's Allowance earnings limit, they would instead lose thousands of pounds in tax credits.

Carers UK is also urging the Government to put in place a long-term solution so that this conflict does not arise again in the future. It is an opportunity for Government to include this change in the cross-Government Carers Action Plan which will be published in the New Year.

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Carers UK response to earnings limit rise

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Carers UK has welcomed a rise in the earnings limit, but says carers are still being "trapped" by benefits rule. Carers UK has welcomed the Government announcement that from April 2018 the earnings threshold for Carer's Allowance will be raised to £120 a week as any increase can make some difference.