Estructura ideológica y determinación económica

We defined 40 indicators of care needs from the survey information. These are shown in Annex 6.1 grouped according to needs for attention (19 indicators), supervision (11) and help preparing a cooked main meal (10), the three main dimensions of needs covered by the care component. They include self-care activities with which individuals might need help, washing and dressing for example, behaviours which can imply a need for watching over, and some of the skills required to plan and prepare a meal. Some indicators represent the amount and frequency of needs that applicants may have during the day or night. To investigate the distribution of care awards according to these indicators, we look first at the boundary between lower rate awards and rejected claims, and then compare lower rate recipients and recipients of middle or higher rate awards.

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6.2.1 Lower rate care recipients and unsuccessful applicants

Twenty of these needs distinguish between lower rate recipients and unsuccessful applicants. Their prevalence and associations with outcome, as measured by ORs, are shown in Table 6.1. As an example, 72 per cent of lower rate recipients said they need help preparing a hot meal compared with 40 per cent of unsuccessful applicants. Lower rate recipients are nearly four times as likely (OR = 3.9) to need help preparing a hot meal as unsuccessful applicants. Another way of expressing this is that needing help to prepare a hot meal increases the chances of a lower rate award, as against rejection, nearly four times.17

It can be seen that 18 of these needs, so defined, are associated with lower rate awards although some are reported by very few respondents. Each of them describes a need for personal attention with bodily functions, or for someone to cook a hot meal or perform related activities requiring similar skills. Further, many of the attendance indicators associated with lower rate awards imply limited or periodic needs for care, perhaps three or four times a day: first thing in the morning, at meal times, and again in the evening. Preparing a cooked meal or limited care are precisely the areas covered by the lower rate criteria, although not all such needs, as defined here, would necessarily have informed the adjudication process.'8

Other attendance needs listed in Annex 6.1, which do not distinguish, statistically, between lower rate recipients and unsuccessful applicants are also more prevalent among the former group, confirming that they have a greater overall need for help with personal care.

Two indicators are associated with an unsuccessful claim: needing less than 20 hours of help a week and a risk of running away. This last indicator represents a need for supervision. Most of the indicators shown in Annex 6.1 that do not distinguish between lower rate recipients and unsuccessful applicants reflect supervision needs. This is as expected: such needs should only distinguish between higher or middle rate recipients and other applicants. Lower rate recipients may have supervision needs, more or less in the same proportions as unsuccessful applicants, but presumably in neither case were these considered to give rise to substantial danger. As a result, they did not qualify for a middle or higher rate award.

No single need as defined here is reported by everyone, but most respondents clearly have more than one: people who need help getting in and out of bed will often need help dressing, for example. This suggests that patterns of needs rather than their crude prevalence would distinguish more sharply between outcomes. To find the best combination to predict lower rate awards we evaluated all 40 indicators using logistic regression analysis.

When considered together, only the five indicators shown in the last column of Table 6.1 distinguish between lower rate awards and rejections.° The three most important predictors, all associated with lower rate awards, indicate a need for help with preparing and eating a main meal. Needing help preparing a cooked meal, a key test for lower rate awards, is also the most inclusive indicator, mentioned by more than seven out of ten recipients. Feeding difficulties imply limited or periodic care as well as dexterity problems. Two of the five predictors are associated with unsuccessful applicants, including the one shown at the bottom of Table 6.1 which, on its own, does not have a significant effect on outcome. One of these, running away, implies supervision needs. The other, an inability to turn taps on and off, relates to dexterity and arguably should be associated with lower rate awards: this

17 _{ORs greater than one show that a need is associated with, or more prevalent among, lower rate}

recipients; those less than one the reverse. ORs are assessed as signifcantly different from 1.0, that is, no association, according to 95 per cent confidence intervals. Appendix 4 provides further details on the interpretation of ORs.

'8

The conditions of entitlement are summarised in Annex 2.1. A need to be accompanied outdoors was ruled as attention in connection with bodily functions in April 1994 after the initial claims of respondents in this survey had been determined.

19

The best predictors are identifed by statistical criteria. They do not necessarily identify individuals' most important needs or those that actually determine the outcome of their claims.

is the case when considered on its own (OR = 1.6), though insufficiently so be statistically significant.

Table 6.2 Needs for help with care: lower rate and higher or middle rate awards

Care needs Lower rate care (%) Higher/ middle rate care (%) OR OR*

Needs help preparing a hot meal 72 63 1.6 1.9

Needs help washing up and drying dishes 52 41 1.5 ns

Needs help dressing and undressing 42 29 1.8 ns

Needs less than 20 hours help a week 33 24 1.6 ns

Occasionally needs help during the day or night 27 10 3.3 1.9

Needs 20 hours or more help a week 66 74 0.7 ns

Needs to be accompanied outdoors 54 67 0.6 ns

Needs help with medical treatment 29 41 0.6 ns

Needs someone to keep a watchful eye day and night 22 46 0.3 0.6

Feels the need to have someone present all the time 18 38 0.4 ns

Often gets confused 17 38 0.3 0.5

Gets so upset that runs away 13 27 0.4 ns

Needs help with oral communication 12 21 0.5 ns

Needs a lot of help/attention throughout day or night 9 15 0.5 ns

Needs help getting to the toilet 9 16 0.5 0.3

Gets so upset that breaks or rips up things 9 21 0.4 ns

Needs help washing hands and face 6 12 0.5 ns

Gets so upset that hits other people 5 12 0.4 ns

Needs help using the toilet 4 7 0.5 ns

Often forgets to turn off fire, cooker or taps 4 8 0.5 ns

Wanders off without realising 3 13 0.2 0.4

Gets so upset that injures him/herself 3 17 0.2 0.3

Usually gets no warning of a fit/convulsion 2 16 0.1 0.1

Needs help feeding including cutting up food 23 17 ns 2.3

Cannot serve food from a pan using a spoon or ladle 11 14 ns 0.5

Base (= 100%) 699 241

* OR adjusted for the effects of one indicator upon another. ns = not significant.

Percentages sum to more than 100 because some people have more than one need for help. 6.2.2 Lower rate and middle rate care recipients

Our indicators of care needs also distinguish between different levels of an award in ways that are consistent with the conditions of entitlement. Twenty-three indicators distinguish between lower rate recipients and higher or middle rate recipients, as shown in Table 6.2. The first five are associated with lower rate awards. These relate to needs for help with preparing a cooked main meal or for limited attention from someone for personal care - help with getting dressed or occasional help during the day or night for instance.

The remaining 18 indicators are associated with middle or higher rate recipients and, as might be expected, they divide almost equally between supervision and attendance needs. They imply a need for continual supervision arising from aggressive behaviours, self-harm, potential dangers out of doors, unforeseen epileptic fits or impaired memory. Fewer specific attendance needs are significantly associated with higher or middle rate recipients, probably because our indicators do not adequately capture the frequency or intensity of need that would distinguish them from lower rate recipients. Nonetheless, those attendance needs that are associated with higher or middle rate awards imply heavy or important care needs, help with toileting or medication for example, and for lengthy periods of attention during the day or the night, or both.

Although lower rate recipients are more likely to need help preparing a cooked meal, a majority of recipients reported such a need irrespective of the level of award. Moreover, many of the needs associated with preparing a meal (those arising from poor dexterity skills, for example) do not distinguish between different levels of a care award. This is not surprising. Although most lower rate recipients

qualify for an award solely on account of the meals test, people who qualify for a middle or higher rate award are also often unable to prepare a cooked meal because of dexterity or learning difficulties. Some middle and higher rate recipients also report the limited or periodic care needs associated with lower rate awards, for example, help with dressing and undressing. Clearly, such needs may be present regardless of whether the more demanding attendance or supervision criteria are met.

When considered together ten indicators, shown in the last column of Table 6.2, are sufficient to predict lower rate and other awards. It can be seen that these predictors cover attendance and supervision needs, and help with preparing a main meal. They include help with feeding and difficulties serving food which, on their own, do not distinguish between lower rate and other recipients.

6.2.3 Predicting lower rate care awards

The model separating lower rate recipients from unsuccessful claimants, and the model separating those receiving the lower rate from middle or higher rate recipients, can be used to assign each case to a predicted outcome. That is, using the information at its disposal, each model predicts the probability of an individual belonging to one group or another. Estimated probabilities greater than one-half identify the predicted outcomes for individuals. Comparing the observed and predicted outcomes provides an indication of consistency in the distribution of awards, at least according to the model.

Figure 6.1 Observed and predicted outcomes: DLA care awards

Proportion successfully predicted

100% 100% 80%-1 80% 60% -i - 60% 40% - 40% 20% - 20% 0% 0%

Lower rate Rejected Lower rate Higher/Middle

Outcome of application for DLA care

Figure 6.1 shows the predicted outcomes with a probability of 0.5 or more. Most lower rate recipients are correctly predicted, as are a majority of unsuccessful applicants. However, comparatively few higher or middle rate recipients are correctly assigned because, as noted above, our indicators reflect poorly the frequency and intensity of needs in this group. As a consequence, they are not so clearly distinguished from lower rate recipients.

Table 6.3 compares predicted outcomes for lower rate recipients from both models. The rows of the table show the predictions from the model separating lower rate recipients and unsuccessful applicants. The columns summarise the predictions from the model separating lower rate from middle or higher rate recipients. Individuals have been grouped according to the probability of a lower rate award.

Instead of two outcomes predicted by probabilities greater or less than one-half, a middle category is introduced. This defines outcomes which are uncertain according to the model, that is with estimated probabilities close to 0.5.

Table 6.3 Lower rate care awards: prediction results

Lower rate care Uncertain Higher/middle rate care Missing cases (? 0.4< 0.6)

Predicted probabilities (5 0.6) (<0.4) Total of a lower rate award (N) (N) (N) (N) (N)

Lower rate care (>_ 0.6) II 439

Uncertain (? 0.4 < 0.6) I - 13 6 2 192

Rejection (< 0.4) 21 3 3 1 28

Missing cases * I

Total 589 41 20 10 660

* 39 cases excluded from both analyses because of missing data.

It can be seen that 60 per cent (396) of lower rate care recipients are confidently predicted to receive lower rate care awards by both models, and a further 36 per cent (236) by one model or the other. These predictions are shaded in the table. Only four per cent of lower rate recipients (28) are incorrectly predicted by both models, or the outcome of their claim is uncertain.

Almost all lower rate care recipients, therefore, can be distinguished by one or both models from unsuccessful applicants and other recipients according to their pattern of needs. Further, these findings settle the concern about the poor targeting of lower rate care awards in relation to severity of overall disability, discussed in Chapter 4. The vast majority of lower rate recipients, whether on, above or below the target severity categories, are predicted to receive a lower rate award. Although three out of four lower rate recipients miss the intended severity categories 5-6, usually because they are more severely disabled, there is no evidence that this reflects variations in care needs. Of the 28 lower rate recipients who are incorrectly predicted by both models (the unshaded area of the table), most (20) are above the target categories, and only six are predicted to receive a middle or higher rate

award.

These findings show that lower rate care recipients are consistently identified according to a distinct set of needs. If the indicators are good measures of the care needs for which DLA is intended to cover, the results further suggest that the adjudication process consistently identifies claimants who are eligible for a lower rate award.

Rejected claims are not so easily distinguished. According to one model (see Figure 6.1) 41 per cent of unsuccessful applicants (147) are predicted to receive a lower rate award (probability >_ 0.5). Apart from six individuals who failed to satisfy the prescribed qualifying periods,20 all were rejected on disability grounds, that is

failure to meet the conditions of entitlement relating to attendance, supervision or the preparation of a cooked main meal. We felt that the proportion of unsuccessful applicants predicted to receive lower rate care was sufficiently large to justify further investigation. In addition, 25 per cent of applicants (75) who did not apply for a care award, are predicted to receive a lower rate award. Although it is not clear what evidence of their care needs, if any, was considered when determining their claim for DLA, we decided that they too required further examination.

6.2.4 Incorrectly predicted unsuccessful applicants for a care award

In one sense it is not surprising that some unsuccessful applicants are predicted to receive a lower rate award. Rejection arises from a failure to meet prescribed conditions rather than satisfying criteria which positively identify an unfavourable

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To qualify, the conditions of entitlement must be satisfied three months before and six months following the date on which the award would begin.

outcome. Unsuccessful applicants may have similar patterns of need, defined by our indicators, to those of lower rate recipients yet their care needs may be insufficiently frequent or severe to qualify for an award. Moreover, our assessment of needs post-dates the initial claim for DLA. Compared to other unsuccessful applicants, those predicted to receive lower rate care are three times as likely to report that their attendance and supervision needs had increased since they filled in their application form (OR = 3.0). Some applicants, therefore, may have satisfied the disability conditions for a lower rate award at the time of our survey, though this possibility is indicated for less than one in five of those predicted to receive such an award.

As described in Chapter 5, unsuccessful applicants generally report more severe psychiatric symptoms than lower rate recipients (Table 5.8). Further investigation showed that the prevalence of psychiatric disturbance did not vary between unsuccessful applicants predicted to receive lower rate care and other claimants who were rejected for an award. However, the former group are more severely disturbed.21 So one possible explanation for the predicted awards is that the particular care needs of some people with mental health problems may not be sufficient to attract an award, or they may not be identified in the claiming and adjudication process.

Another possibility is that unsuccessful applicants predicted to receive lower rate care may not have been able to present a full or accurate picture of their needs for care. To test this hypothesis we compared their accounts of submitting a claim for DLA with those of other unsuccessful applicants and lower rate recipients. Three questions are of greatest concern:

a. Did claimants have any help filling in the claim form, including a `supporting' statement from a carer, doctor or other health professional? b. Did the claim form, or medical examination if any, enable applicants to

describe the effects of their illness or disability and provide an accurate picture?

c. Were applicants happy with the decision on their claim?

These issues are addressed in the Quality of Service study described in Part Two of this report. We drew on information from that study to investigate further incorrectly predicted outcomes.

A narrow majority of unsuccessful claimants who were predicted to receive a lower rate care award reported that they were unable to present an adequate picture of their needs but these difficulties do not reflect lack of help with or investigation of their claim. On the whole, however, they reported a less satisfactory experience of claiming DLA than lower rate recipients. Although these unsuccessful applicants are no less likely than recipients to have been helped when filling in the claim form, to have obtained a `supporting' statement, or to have been examined by a visiting doctor in connection with the claim, they are more often dissatisfied with the process. They are significantly less likely than lower rate recipients to say that the claim form was helpful in describing their illness or disability (51 and 62 per cent, respectively), in describing its effects on their lives (46 and 63 per cent), and in providing an accurate picture of their needs (43 and 57 per cent). Where a medical examination had been conducted, they were also less likely to feel that this presented an accurate picture of their condition (57 and 80 per cent). Not surprisingly, therefore, fewer unsuccessful applicants predicted to receive a lower rate award said they were happy with the decision on their claim (22 per cent as opposed to 80 per cent of lower rate recipients) and most intended to ask for a review or had already done so (78 per cent).

However, it is difficult to conclude that the dissatisfaction expressed by these unsuccessful applicants indicates that their needs received less than adequate

27 _{The GHQ score, the Likert score and the Chronicity score, defined in Annex 4.1, are significantly}

higher among unsuccessful applicants predicted to receive a lower rate award than other unsuccessful applicants. The average scores in turn are: 7.3 and 5.6, 21.2 and 18.2, 8.7 and 7.6, respectively.

consideration in the adjudication process. It may arise largely from the negative experience of rejection - an outcome effect - because their experience of claiming is reportedly no less satisfactory than that of other unsuccessful claimants. Overall, the experience of unsuccessful applicants making a claim for DLA is remarkably