Benefits and Services for Persons with Disabilities
SUPPORTS AND SERVICES FOR ADULTS AND CHILDREN AGED 5—14 WITH DISABILITIES IN CANADA: An analysis of data on needs and gaps

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Section II: Help with Daily Activities

Some persons with disabilities also require assistance with some basic daily activities within or around the home due to their disability. Examples of these activities are: meal preparation, light housework, heavy household chores, running errands or going to appointments, paying bills, personal finances, child care, personal care, specialized care (medical) and moving inside one's residence.

Magnitude of Requirement for Help with Daily Activities

Some 2.4 Million Persons with Disabilities Reported a Requirement for Help with Daily Activities18

70% of all adults with disabilities required help with everyday activities such as meal preparation, light housework, heavy household chores, etc.19

Women and Seniors More Likely to Require Help with Daily Activities

Overall, 79% of women with disabilities (1,494,050) stated that they required help compared with 59% of men (904,670).

Not surprisingly, seniors were more likely than working-age adults to require assistance. 75% (1,094,960) of seniors required help compared to 66% of working-age adults (1,303,740). However, it is also the case that, in terms of sheer numbers, working-age adults comprise the largest population requiring help with everyday activities (54% of all those requiring help or 1,303,740/2,398,720).

The severity of the disability also increases the likelihood that a person with a disability will require help with everyday tasks. As the severity level increases, so does the requirement: 47% of those with mild disabilities required assistance compared to 94% of those with very severe disabilities.20

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Those With Memory and Developmental Disabilities Most Likely to Require Support with Daily Activities

As summarized in Table 1.7, those with memory and developmental disabilities are the most likely to require some type of support with daily activities (86% of each). Those with hearing disabilities were the least likely to report such a requirement (65%).

Table 1.7
Percentage and Number Requiring for Support with Daily Activities by
Person's Type of Disability
 
Number
%
agility 1,855,260 81%
hearing 724,640 66%
learning 352,680 78%
mobility 1,975,280 81%
sight 498,590 84%
speech 302,560 83%
memory 361,010 86%
developmental 103,860 86%
pain 1,828,190 77%
psychological 423,000 81%
Source: PALS, 2001.

Type of Support with Daily Activities

The Majority Need Help with Heavy Household Chores

Help is required more often with tasks commonly considered 'housework' or 'domestic labour' such as —heavy housework, everyday housework, and meal preparation. In particular, the greatest requirement for assistance involves heavy household chores with over half of all persons with disabilities requiring assistance with this particular group of tasks. Less often, there is a requirement for more personalized assistance such as "help moving about the house", "specialized nursing/medical treatment," "personal care," or "personal finance". Less often, as well, there is a requirement for "childcare"; this question, however, was asked only of those who had children under the age of 15 living with them. There is, however, a considerable need for assistance in getting to appointments outside of the home.

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* Note: The percentage for childcare is based upon only those who have children under the age of 15 living with them (n=437,134)

Note: more than one activity could be listed per person. These are not mutually exclusive categories.

Unmet Need for Support with Daily Activities

Overall, Most People Requiring Support with Daily Activities Receive It

Two-thirds (1,615,460) of all those with disabilities who required help with everyday activities stated that they received all the help they required. Just over a quarter (27% or 652,660) received some of the help they required but still needed more; and 5% (130,590) of those who required supports received none at all.21

There is a High Unmet Need for Support with Childcare

While only a small proportion (5%) of individuals who require assistance with any everyday activities overall report a totally unmet need (i.e., no supports at all for any of the required services), there are some very noteworthy exceptions when examining specific types of assistance. For those who require childcare, for example, there is a high unmet need of 40%; and most of this unmet need is among those who have no childcare supports at all (26% have no supports at all and 14% have some childcare supports, but not enough).

Similarly, those who require specialized nursing/medical treatment also represent a small proportion of the total requiring some form of help (6% or 210,290). However, if you require this type of help, you are likely to face some challenges in getting it. The total unmet need for specialized nursing/medical treatment is 29% of those requiring it and most have no help at all (21% have no help and 8% have some help but need more).

Help with everyday housework is another area where there are gaps between requirements and actual supports that exceed the average as 13% of those requiring such help have none at all and another 14% have some, but not all, the help they need (for a total unmet need of 27%).

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*Note: The percentage for childcare is based upon only those who have children under the age of 15 living with them.22

In terms of sheer numbers, the unmet need for childcare and specialized nursing care/medical treatment represent a relatively small number of persons with disabilities— 25,130 and 60,640 respectively. When compared with the 484,180 who have an unmet need for heavy housework, these groups seem rather small. However, this is due to the fact that a smaller proportion of this population have any requirement for childcare or specialized nursing care/medical treatment (see Chart 1.19 for full summary). If we were to look at rates of success when there is a need, however, we would see a different story. If you happen to require either of these two supports, you are less likely to be successful in obtaining them than other supports like heavy housework. Worse still, you are much more likely to have no support at all (i.e., most of the unmet need is among those who have none of what they need).

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*Only asked of those living with children under 15 years.

Because the most commonly required support among all persons with disabilities is for assistance with heavy household chores, the largest unmet need in terms of sheer numbers (not percentage of those who actually require it) is also for assistance with heavy household chores. This is true of all disability types, except for those with developmental disabilities who are most likely (in terms of sheer numbers) to have an unmet need for assistance getting to and from appointments (not shown in graph).

Those with Memory-related Disabilities Most Likely to Have Unmet Needs for Support with Daily Activities

Those with memory-related disabilities are one of the most likely to require supports with daily activities and are also the most likely not to receive the supports required. As summarized in Table 1.8, 45% of those with a memory-related disability have an unmet need for such supports (40% partially unmet and 5% totally unmet). The rate of unmet need is also high among those with learning disabilities (43%), sight disabilities (42%), and psychological disabilities (43%).

Table 1.8
Percentage Partially Unmet, Completely Unmet and Fully Met Need for Support
with Daily Activities by Person's Disability Type
 
Partially
Unmet Need
Completely
Unmet Need
Total
Unmet Need
Fully
Met Need
agility 30% 5% 35% 65%
hearing 27% 6% 33% 67%
learning 37% 6% 43% 57%
mobility 29% 5% 34% 66%
sight 37% 5% 42% 58%
speech 36% 4% 40% 60%
memory 40% 5% 45% 55%
developmental 33% 3% 35% 65%
pain 29% 6% 35% 65%
psychological 36% 7% 43% 57%
Source: PALS, 2001.

Reasons Cited for Unmet Need for Support with Daily Activities

Cost Main Reason for Unmet Need

It is evident that cost is a major factor in unmet need—both directly and indirectly. One can easily interpret reasons such as "not covered by insurance" and "informal help is not available" and "applied for home care and turned down" as indirectly flowing from cost. It is interesting, however, that a quarter of those with unmet needs cited "did not know where to obtain it" as the underlying reason. This might also be related to cost (it might really mean: "did not know where to obtain it for a low price or for free"). However, it is just as likely that this represent a gap in the communication system around disability supports. Similarly, "help is not available in the area" which is cited by 11% with an unmet need indicates that some areas are less well serviced than others for at least a tenth of the population. A further analysis of the gap in supports and services examining the impact of community size would be advised.

Some 783,250 persons with disabilities reported unmet need. The expense of obtaining help was cited by 52% as the main reason. Over one quarter reported that they did not have informal care (care provided by family and friends) and over a quarter indicated that the costs were not covered by their insurance. One-quarter did not know where to obtain help.

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Note: Individuals could cite more than one reason for their unmet need.

Women are more likely than men to state that the costs of obtaining supports for daily activities were prohibitive (62% compared with 40%); that they did not have the luxury of receiving help from friends and family (34% compared with 19%); and that their insurance did not cover these costs (32% compared with 20%). (Chart 1.21) Working age women were more likely than their senior counterparts to cite expense and lack of informal help as barriers (not shown).

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Note: Individuals could cite more than one reason for their unmet need.

Expense-related Reasons May be Even More Important to Working-age than to Seniors

Both working-age adults and seniors cite expense as a major barrier. (Chart 1.22) Working-age adults were more likely than seniors to feel expense was a barrier (56% versus 47%). Working-age adults were also more likely to cite barriers such as lack of insurance coverage (29% versus 23% for seniors); the lack of informal help (29% versus 25%) and lack of knowledge of where to obtain supports (27% versus 20%). Working-age adults cited an average of 2.1 reasons per person and seniors cited an average of 1.9 reasons per person.

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Note: Individuals could cite more than one reason for their unmet need.

Basic Demographic Profile of Unmet Need for Support with Daily Activities

When it comes to an overall requirement for supports for daily activities, men are very slightly more likely than women to have their needs met fully (69% compared to 66%). Gender differences, overall, are very slight when we examine support for all everyday activities.

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Seniors More Likely than Non-seniors to Receive All the Help Needed with Daily Activities

Seniors (70%) were more likely than working-age adults (65%) to receive all the help they required to perform their everyday activities. Some 7% of those aged 15 to 64% received none of the help they felt was required compared to 3% for seniors. Overall, working-age adults were more likely to have unmet needs with respect to receiving support with everyday activities.

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Unmet Need for Support with Daily Activities Increases with Severity of the Disability

The more severe the disability, the less likely one is to have their requirements for support with everyday activities met. For example, 22% of those with mild disabilities had unmet needs for support with everyday activities compared with 46% of those with very severe disabilities. This means that 78% of those with mild disabilities have their requirements fully met compared with 54% of those with very severe disabilities.

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Who Provides Assistance with Daily Activities?

Help Comes Primarily from Family and Friends

Help with everyday activities can come from a variety of sources - family, friends or neighbours, organizations, agencies or other sources.

The majority of persons with disabilities who received help with everyday activities received help from family members living with them (63%) and family members who did not live with them (42%). Less than a quarter (24%) of these individuals received help from organizations or agencies. In fact, people were just as likely to receive help from friends and neighbours (24%) as they were from organizations or agencies. (Chart 1.26)

Men were very slightly more likely than women to report receiving help from friends and neighbours (27% compared to 22%) and very slightly less likely than women to report help from organizations and agencies (22% compared with 25%). (Not shown in chart.)

Non-seniors were most likely to receive assistance with everyday tasks from family living with them (73%) and family not living with them (38%). Among seniors, there was a slight shift indicative of age differences in family composition. Family assistance was also very important for seniors; 52% received help from family living with them (lower than for non-seniors which is indicative of the greater tendency among seniors to live alone) and 48% received help from family not living with them. Among seniors, the family caregivers not living with them are most likely to be grown children—in many cases, these children will be part of the baby-boom generation. The longer term implication of this is that, as the 'baby-boom' generation ages into their senior years, the available pool of younger relatives able to pitch in will be much lower than it is at present. The reduction in the birth rate after the 'baby-boom' generation will result in fewer potential 'helpers' being available to an increased number of seniors in years to come. Among seniors, 34% receive help from organizations or agencies compared with 16% among non-seniors. As individuals age, there is likely to be greater reliance upon caregivers outside the home. Where there is a shortage of family members, the need for organizations and agencies to fill the gap increases. (Not shown in chart)

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Note: More than one source of help could be cited.

Sources of Help Related to Type of Task

The majority of those who receive help with everyday activities rely on their families. This is evident in Chart 1.27, which summarizes the proportion of individuals receiving help from various sources with nine different everyday activities. The most obvious exception is in the case of specialized nursing or medical care where only 13% of the individuals receiving such help get it from family living with them and 3% from family not living with them. Among those who received help with specialized nursing or medical care, over three—quarters of them (76%) relied on agencies and organizations. Overall, however, it is families, friends and neighbours who provide the majority of the help to persons with disabilities.

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Who Pays for Help with Daily Activities?

Much of the help with daily activities that is received is provided free of charge; 70% of individuals with disabilities who received help with daily activities report that the help for some or all of the support they received was provided free of charge.23 Given the high percentage of people receiving help from family members, this is not surprising. About one third of those receiving some type of assistance report that they paid for some or all of it themselves (or their immediate family).24 Only 3% report that some of their assistance was paid for by some type of home care program25 and 3% report some other type of publicly funded program paid for some of their support.26

Table 1.9
Who Pays for the Help with Daily Activities?
 
Number
%
Help is free 1,402,110 70%
Individual (or immediate family) pays 664,050 33%
Family not living with individual pays 34,160 2%
Home care program pays 65,180 3%
Other public source pays 65,180 3%
Source: PALS, 2001
Note: Categories are not mutually exclusive.
Some individuals reported more than one source of payment.
Note: Sources of payment reported by less than 1% are not listed.

Over half a million individuals with some type of support with daily activities (664,050) reported paying for some or all of that support themselves. Of these, only 8% reported being reimbursed (either partially or fully) for these costs. Of those who were reimbursed (either partially or fully), 46% had some reimbursement directly from some level of government; 21% had some reimbursement from some private health care plan; 21% had some reimbursement through a tax credit; and 19% had some 'other' type of reimbursement source. Obviously, some individuals were reimbursed through more than one source. It is important to note, however, that only 8% with direct costs to themselves for support with daily activities received any form of reimbursement.