Eligibility for Polio Survivors under the National Disability Insurance Scheme

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POLIO AUSTRALIA INCORPORATED

Representing polio survivors throughout Australia

John Tierney OAM, President Suite 119C, 89 High Street, Kew Vic 3101

Email: office@polioaustralia.org.au PO Box 500 Kew East Vic 3102

ABRN 142 977 053    www.polioaustralia.org.au           Phone: (03) 9016 7678 / 0466 718 222

Polio Australia Submission

1 February 2013

Inquiry into the

National Disability Insurance Scheme Bill 2012

We’re Still Here !

National Patron: Dr John Tierney PhD OAM, Federal Senator for NSW 1991 – 2005

POLIO AUSTRALIA INCORPORATED

Representing polio survivors throughout Australia

John Tierney OAM, President Suite 119C, 89 High Street, Kew Vic 3101

Email: office@polioaustralia.org.au PO Box 500 Kew East Vic 3102

ABRN 142 977 053    www.polioaustralia.org.au           Phone: (03) 9016 7678 / 0466 718 222

Polio Australia Submission

1 February 2013

Inquiry into the

National Disability Insurance Scheme Bill 2012

Executive Summary

Polio Australia congratulates the Government on the initiative of establishing an NDIS and welcomes the benefits it will bring to people with a disability in Australia. The fact that the Scheme aims to provide for the needs of all people with disability, regardless of the cause of the disability, is particularly important.

To date there has been little support for those whose disability arose from a disease process. In particular, many, perhaps the majority, of polio survivors have fallen ‘through the cracks’ of all programs and have had minimal assistance throughout their lives. Polio Australia is deeply concerned that the age-related NDIS eligibility criterion as currently proposed will result in polio survivors continuing to miss out on such assistance.

Each polio survivor experiencing the late effects of polio (LEOP) has a different set of

disabilities  or   limitations  and   different  personal  circumstances.  There  are

commonalities, which mean that services need to be provided by personnel who have

knowledge  of LEOP. Unfortunately  this requirement  is very often not met. The

opportunity to have a personal plan and funding to access appropriate services and to ensure co-ordination between services would be greatly valued by polio survivors.

The specialised coordinated care, which is so necessary for assisting people with LEOP, cannot be provided under standard programs designed for aged care. In fact, there are no specialist LEOP services in the aged care sector for polio survivors aged 65 and over. As the provision of all services that people with the LEOP require are grossly inadequate now, it would be a tragedy if this situation was compounded by an NDIS scheme that excludes polio survivors, one of the largest and most needy disability groups in Australia.

Polio Australia’s position is that those with polio-derived disability (being long-standing and permanent) which pre-dates the introduction of the NDIS should not be excluded from participation in the NDIS on the grounds of age because aged care programs demonstrably cannot meet their special needs.

National Patron: Dr John Tierney PhD OAM, Federal Senator for NSW 1991 – 2005

Table of Contents

Background ……………………………………………………………………………… 1

National Disability Insurance Scheme (NDIS) ……………………………………. 1

Polio Australia …………………………………………………………………………… 1

Poliomyelitis …………………………………………………………………………….. 2

The Late Effects of Polio (LEOP) …………………………………………………….. 2

Ageing with the Late Effects of Polio ……………………………………………….. 3

Federal Parliamentary Recognition of the Late Effects of Polio ………………… 4

Relevance of the NDIS to Polio Survivors …………………………………………. 4

Polio Survivors’ Lack of Eligibility for the NDIS …………………………………… 5

Recommendation ………………………………………………………………………. 6

Conclusion ………………………………………………………………………………. 6

Attachment 1 – Supporting Information …………………………………………… 7

Attachment 2 – Late Effects of Polio Symptoms …………………………………. 8

Attachment 3 – Activities of Daily Living ………………………………………….. 9

POLIO AUSTRALIA INCORPORATED

Representing polio survivors throughout Australia

Dr John Tierney OAM, President Suite 119C, 89 High Street, Kew Vic 3101

Email: office@polioaustralia.org.au PO Box 500 Kew East Vic 3102

ABRN 142 977 053  www.polioaustralia.org.au            Phone: (03) 9016 7678 / 0466 718 222

Inquiry into the National Disability Insurance Scheme Bill 2012

SUBMISSION FROM POLIO AUSTRALIA

1 Febuary 2013

Background

Polio Australia received an invitation from Mr Ian Holland, Secretary of the Standing Committee on Community Affairs, inviting the organisation to make a submission to this inquiry. As the sole national representative of one of the largest physical disability groups in the community, Polio Australia welcomes this opportunity.

National Disability Insurance Scheme (NDIS)

Polio Australia congratulates the Government on the initiative of establishing an NDIS and welcomes the benefits it will bring to people with a disability in Australia. The fact that the Scheme aims to provide for the needs of all people with disability, regardless of the cause of the disability, is particularly important. We fully support the aim of the NDIS to “support the independence and social and economic participation of people with a disability”.

To date there has been little support for those whose disability arose from a disease process or from medical conditions, or for whom the support is inconsistent and often dependent on very specific funding programs.

In particular, many, perhaps the majority, of polio survivors ‘fell through the cracks’ of all programs and have had minimal assistance throughout their lives. Polio Australia is deeply concerned that the age-related NDIS eligibility criterion as currently proposed will result in polio survivors continuing to miss out on such assistance. Before going on to discuss this in more detail, it is first necessary to present a briefing on the unique issues faced by polio survivors. Further supporting information is provided in Attachment 1.

Polio Australia

Polio Australia is the national body providing for communication between the various state polio organisations and their regional polio-survivor members, and providing for

the provision of service programs on a unified national basis.  Polio Australia  is

committed to standardising quality polio information and service provision across

Australia  for polio survivors. Polio Australia’s Vision  is that  all polio survivors  in

Australia have access to appropriate health care and the support required to maintain independence and make informed lifestyle choices throughout the whole of their life.

The purpose of Polio Australia is to:

  • Educate and inform polio survivors, their families and carers, and the community at large, about the late effects of polio.

  • Provide information, education and training to General Practitioners and a range of medical specialists and other health professionals to improve the diagnosis and management of the Late Effects of Polio (LEOP).

National Patron: Dr John Tierney PhD OAM, Federal Senator for NSW 1991 – 2005

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  • Facilitate the provision of appropriate and consistent health, disability and aged care support services across all states and territories to improve the treatment and management of LEOP.

  • Advise governments on policy development and programs in relation to LEOP.

  • Stimulate research into LEOP.

  • Assist the state Networks to support polio survivors and their families, friends and carers at the local level.

Poliomyelitis

Poliomyelitis (polio) is a highly infectious disease caused by a virus. It initially invades the gut but may invade the nervous system and the disease can cause total or partial paralysis in a matter of hours. A significant proportion of people who contract the virus have no sign of illness and are never aware that they have been infected.

For around one percent of people who contract the virus the situation is far graver with more severe initial symptoms and possibly permanent disability. Initial symptoms are fever, fatigue, headache, vomiting, stiffness in the neck and pain in the limbs. One in 200 infections leads to irreversible paralysis (usually in the legs). Amongst those paralysed, 5%-10% die when their breathing muscles become immobilised. Others only survived because of mechanical breathing devices such as the iron lung.

Polio can strike at any age but a high proportion of those infected are young children. Polio is often regarded as having three stages:

  • Acute Illness: As described above.
  • Recovery period: The period during which the person regains function.
  • Period of maximum recovery: The years from when the person has regained as much strength as possible.

For some polio survivors the residual effects of their illness have imposed continuing restrictions on their lives, with varying degrees of severity. These effects can include partial or complete quadriplegia or paraplegia, severe scoliosis, shortened or withered

limbs,  breathing problems and  the need  to use  aids and  appliances such as

wheelchairs,  callipers, orthopaedic shoes and crutches or walking  sticks. Others

appear  to have recovered  completely,  leading  physically  active  lives  until new

symptoms become apparent. A  further group  of people appear  to escape  this

development. Up to seventy per cent of people who contract paralytic and non paralytic polio develop new problems known as the Late Effects of Polio (LEOP), and possibly Post-Polio Syndrome (PPS), usually in their forties and fifties.

The Late Effects of Polio (LEOP)

LEOP is a term applied to a range of difficulties experienced by polio survivors. These difficulties are generally regarded as those which develop from living with residual paralysis and from problems arising from weakened muscles and deformed limbs or joints. For example:

  • Muscles, which appear normal, may have been weakened by polio and, after some years, the activities of daily living and of physical pursuits take their toll and the muscles become more obviously weak.

  • Overuse and unbalanced use of joints and muscles through the need to use crutches, walking sticks, manual wheelchairs, strain on arms when they are used to compensate for weak legs (such as in pushing out of chairs or pulling up stairs by the hand rail).

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•   Excessive  strain caused by,  for example, awkward  gaits from shortened  or

weakened  limbs. These problems can  result  in  joint problems, degenerative

arthritis and pain from nerve entrapment, such as carpel tunnel syndrome.

Post-Polio Syndrome (PPS)  is now  considered  to be a  sub-set  of LEOP when

neurological factors are involved. Following the initial polio illness the nerve cells send out extra branches to replace those that have been damaged. This enables the person

to regain some movement and strength.  It  is thought that PPS  is caused by the

deterioration of these weaker and over-used nerve cells.

The most common symptoms of PPS are fatigue, muscle weakness, and muscle and joint pain. There are a range of other symptoms which people may experience. These

include atrophy, cramping or twitching in muscles, new or increased  difficulty  in

breathing or swallowing, changes in voice, sleep problems, and increased sensitivity to cold.

Over the years the state organisations supporting polio survivors have undertaken a number of surveys of their members – one such survey was published in New South Wales in 2007 [1]. Attachment 2 presents a table from that survey showing the percentage of respondents who experience each of these symptoms. It can be seen

that muscle weakness and general  fatigue are experienced by around 90%  of

respondents, and muscle pain and joint pain by around 75%. Attachment 3 highlights some other key findings from the survey, related to the activities of daily living.

It has been found that people who contracted the virus but were not paralysed, and perhaps were not even aware of having had polio, can experience some or many of these late effects. This means that the potential number of people with polio-derived problems may far exceed the number recorded as having contracted polio.

Ageing with the Late Effects of Polio

As many polio survivors have grown older, they have joined a new and growing cohort of the Australian ageing population, those who have lived for decades with long-term disabilities (AIHW, 2000 [2]; ABS, 2010 [3]).

People ageing with physical disabilities [4] want to continue to live in their communities and realise their vocational, recreational, family and social potential. To achieve this, people with LEOP have to contend with the legacy of polio, which often leaves them with a range of physical and psychological challenges decades after contracting the

disease. The attitude of polio survivors to the cards that  life has handed them  is

clearly displayed in a recent survey [1] of polio survivors:

•   the need to be ‘normal’ has been a  significant  factor  in the  lives  of many

respondents;

  • an approach to life which embraces learning to live with one’s physical limitations and make the most of life;

  • a lack of willingness to accept help or even to acknowledge the need for it;

  • a view of life which puts responsibility on oneself; and

  • optimism to deal with future problems. [1] Polio: The Living Legacy. Post-Polio Network (NSW) Inc – 2007 [ISBN: 9780646480558] [2] Australian Institute of Health and Welfare. (2000). Disability and ageing. Australian population patterns and implications. Canberra: AIHW Cat. no. dis. 19. [3] Australian Bureau of Statistics. (2010). Disability, Ageing and Carers Australia: Summary of findings. Catalogue 4430. [4] Disability is defined here in the same sense as the UN Convention on the Rights of Persons with Disabilities: An evolving concept and results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society.

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People living with LEOP, as well as ageing, face four additional problems:

  • progression of the impairments, leading to Post-Polio Syndrome (PPS);
  • age related health conditions;
  • lack of expert advice; and
  • potential exclusion from the National Disability Insurance Scheme. The increasing problems of LEOP, and the neurological problems which lead to PPS, are considered to occur around 30-40 years after the initial illness. Those who were only young children at the time of the initial illness have been experiencing these additional problems since a relatively young age, perhaps only in their 30s or 40s well before age 65, and these problems cannot be regarded as related to normal ageing.

Federal Parliamentary Recognition of the Late Effects of Polio

On 30 March 2012 representatives from Polio Australia and State Polio Networks participated in a Roundtable Forum on the Late Effects of Polio / Post-Polio Syndrome conducted by the Federal House of Representatives Standing Committee on Health

and  Ageing. The  Committee’s unanimous  cross-party  Report  to  the House  of

Representatives presented cogent arguments on the urgent need for comprehensive,

consistent, adequately-funded health,  disability and peer support services  for  all

Australian  polio  survivors.  (See  page 7  of  this  submission  for  the  Report’s

recommendations.)

Relevance of the NDIS to Polio Survivors

The key aspects of the NDIS bill that are of particular relevance to people with the LEOP are summed up in the following phrases:

•  Participants develop a  personal, goal-based plan with the Agency, and how

reasonable and necessary supports will be assured to participants.

  • Will fund reasonable and necessary services and supports directly related to an eligible person’s individual ongoing disability support needs;

  • Will enable people with disability to exercise more choice and control in their lives, through a person-centred, self-directed approach, with individualised funding.

Each polio survivor has a different set of disabilities or limitations and different personal circumstances. There are commonalities, which mean that services need to be provided by personnel who have knowledge of LEOP. Unfortunately this factor is often not met. The opportunity to have a personal plan and funding to access appropriate services and to ensure co-ordination between services would be greatly valued by polio survivors.

The specialised coordinated care, which is so necessary for assisting people with LEOP, cannot be provided under standard programs designed for aged

care.   At present, Victoria  is the only state with a specialised service for polio

survivors. The coordinated assistance which the NDIS should be able to provide would be ideal for polio survivors. So many medical and allied professionals have very little

idea of LEOP and can  in  fact provide services which are counter-productive, or

exacerbate the person’s problems, or even counter each other.

The funding provided under the NDIS could assist those who have high costs with mobility and other aids. A pair of orthopaedic shoes costs over $1,000 at a minimum. Callipers can cost anything from $1,000 to $10,000 let alone the cost of, for example, electric wheelchairs and car and home modifications. Such costs are prohibitive for a retired person or pensioner and state-based services are grossly inadequate.

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Polio Survivors’ Lack of Eligibility for the NDIS

The summary statement for Chapter 2 of the Explanatory Memorandum clearly states that “Chapter 2 sets out the general supports and assistance, including funding, that

the Agency can provide  to  all people with  disability and other  individuals and

organisations to enable them to support people with disability”. Unfortunately for many polio survivors the concept of all people with disability is a misnomer as the eligibility requirements will rule out almost all people with LEOP for any assistance. A very serious concern for Polio Australia and the state-based Polio Networks is that polio survivors will not eligible for NDIS provisions on the grounds of age.

To be eligible for assistance during the launch phase a person has to be born by 1948, which will rule out most polio survivors. By 2021, three years after the proposed launch date of the NDIS, no one in Australia who survived the great polio epidemics of the 1930’s, 1940’s and early 1950’s will be eligible for assistance as 2021 is the 65th anniversary of the introduction in Australia of the Salk Vaccine in 1956. The only groups who will meet this restrictive eligibility requirement are:

  • The relatively small number who contracted polio during the epidemics in the mid- to-late 1950’s, or individual cases after the introduction of the polio vaccine in 1956;

  • The isolated cases of those who have migrated to Australia from countries where polio is still rife, or was so after it had been eliminated from Australia.

    Additionally, only a relatively small percentage of polio survivors are in the

geographical areas covered by the trial NDIS programs.

It is acknowledged that in the design of the NDIS it was considered that aged care programs would meet the needs of those aged 65 and over. It can also be assumed that it was considered that disabilities, which are specifically related to ageing, might be more appropriately provided for under aged care programs. Polio Australia has been told that after 65 years of age, people with the LEOP can then access services in the aged care sector. The problem with this is that currently there are no specialist LEOP services in the aged care sector for polio survivors aged 65 and over. As the provision of services that people with the LEOP require over the age of 65 are grossly inadequate now, it would be a tragedy if this situation was compounded by an NDIS scheme that excludes polio survivors, one of the largest and most needy disability groups in Australia.

With very little assistance, most polio survivors have achieved the NDIS aim of independence and social and economic participation of people with a disability but often at great physical, emotional and financial costs to themselves and their parents

initially and  later spouses and  children. Surely as  their  level  of  disability and

associated costs increase over time, they should not be excluded from assistance just because they have lived with their disability for longer. They have funded their own mobility and other special aids; they have survived in a world which did not make provisions for people with disability; their families have suffered deprivations to be able to afford help or aids.

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Recommendation

It  is our key recommendation that the NDIS age  limit be considered

selectively for people whose disabilities result from various causes.

We consider that polio survivors should be eligible regardless of age because:

  • many or even most polio survivors have been living with a disability or at least some level of impairment since their initial illness, which for many was in infancy or early childhood;

  • the need for services by polio survivors will increase greatly as they age because the rate of deterioration for people with LEOP varies between two and five percent

    per annum and this is driven largely by the level of appropriate care and

management of the condition; and

  • the prevailing attitude of the medical profession and society in general to those recovering from acute polio was to get on with life and try to overcome all

obstacles and try to be ‘normal’. Children were encouraged to get rid of crutches, callipers, etc even though we now know that this may have been counter productive in terms of their later condition.

Conclusion

The NDIS aims to prevent people experiencing the problems and deprivations that these people have either endured or overcome to the best extent they could with little or no assistance. The NDIS should enable people with a disability from now on to have a greater chance of a fulfilling life.

Polio survivors meet the eligibility requirements in that their disability is permanent and their support needs are “likely to continue for the person’s lifetime”.

Polio Australia’s position is that those with polio-derived disability (being long-standing and permanent) which pre-dates the introduction of the NDIS should not be excluded from participation in the NDIS on the grounds of age because aged care programs demonstrably cannot meet their special needs.

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ATTACHMENT 1 - SUPPORTING INFORMATION

History of Polio in Australia

While polio has been known to exist for at least three millennia it is only in the period

from around 1880 to 1960 that  its impact  is recorded as being devastating. In

Australia, the first recordings were around 1880 to 1895 with sporadic incidences until the late 1930’s when there was the first major epidemic. In terms of the proportion of the population affected, 1937 was perhaps Australia’s most significant epidemic. It was an epidemic which was at its worst in Victoria. It was said to be five times greater than the previous epidemic. There were extraordinary measures. Many schools were closed and children from them were not permitted to transfer to other schools. One hundred police were stationed along the border to check if cars entering New South Wales carried children who had been exposed to the infection or had attended one of the closed schools. (Australia through Time 1993).

In terms of actual people affected by the epidemics, it is thought that up to 40,000 people contracted polio which progressed to its paralytic form in the period from the 1930s to 1960s and the number with non-paralytic polio is likely to have been ten times that number (400,000), leaving Australia with up to half a million Australians with significant disability as a legacy of the polio virus. Additional to this is a much larger group who had also had a brush with the poliovirus, which is likely to have left them with long-term impairment to some part of the body.

Federal Parliamentary recognition of the Late Effects of Polio

On 4 July 2012 the Federal House of Representatives Standing Committee on Health and Ageing Committee tabled a Discussion Paper resulting from the evidence taken during a Roundtable Forum held on 30 March 2012. In an unusual step the Committee made the following recommendations:

Recommendation 1

The Committee recommends that the Australian Bureau of Statistics and/or the Australian Institute of Health and Welfare establish mechanisms through inclusion of appropriate questions in existing health and/or disability surveys to estimate and report on the size of the population of polio survivors living in Australia, and the

proportion  of  that  population  experiencing  the  late  effects  of  polio/post-polio

syndrome.

Recommendation 2

The Committee recommends that the relevant National Boards, in consultation with key stakeholders including peak professional bodies, medical/health educators and training providers, seek to ensure curricula for students includes information on the late effects of polio/post-polio syndrome, to raise awareness of the condition as a possible diagnostic outcome and of best practice for treatment and management.

Recommendation 3

The Committee recommends that Medicare Locals actively engage with Polio Australia and the state-based post-polio associations, with state and territory government departments of health, and with general practitioners to promote activities which will raise awareness of the late effects of polio/post-polio syndrome:

•  among   practicing   health   professionals   through   continuing   professional

development; and

•   in  the  community  through  patient  education,  noting  the  need  to  tailor

communication to enhance engagement with specific population groups taking into account demographic factors such as age and cultural background.

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ATTACHMENT 2

Late Effects of Polio Symptoms –

Differentiated by Continuing, Increased and New Symptoms

CONTINUING      NEW                    TOTAL                                             OTHER  TOTAL                      PROBLEM      SYMPTOM                PERCENT

NOT INCR’D

INCR’D SEVERITY

Muscle pain              103         187          75              365        74.9

Joint pain                 85         201          77        1      364        74.7

Muscle weakness          99         269          80        2      450        92.4

Fatigue                   98         244          88        1      431        88.5

Muscle atrophy/wasting    139         138          40              317        65.1

Muscle twitching          107          94          67        2      270        55.4

Muscle cramps           134         122          54        2      312        64.1

Breathing difficulties       64          92          50        1      207        42.5

Headaches                81          68          26        3      178        36.6

Sensitivity to cold         129         152          39        1      321        65.9

Tendency to fall           103         136          72        3      314        64.5

Sleep problems            97         131          82        4      314        64.5

Swallowing difficulties      58          58          70        1      187        38.4

Problems finding words     46         107         121              274        56.3

Change in voice           39          58          82        2      183        37.6

Nil Response 2

Total Participants 488

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ATTACHMENT 3 – Activities of Daily Living

Nature of Appliances Used Number of Participants: 488

NO. OF                              PERIOD OF USE       TOTAL USAGE                  AIDS USED

% NUMBER

TOTAL NO.         WITH              ONE  TWO   A    B   C    #                 of 488                                                USING AID           INC’D

USE

Special shoes      101     75  109    34    28    26        197      40.4       37

In-shoe orthosis     56     88   34    43    59    32        167      34.2       41

Ankle-foot                     38     12   16    12    22    10         60      12.3       14  orthosis

Walking stick(s)    139     21   18    54    94    33        199      40.8       84

Crutches           19     49   34    16    25     9         84      17.2       28

Walking frame                   6    11    39     2         58      11.9       23

Knee brace/

30     13    5    14    26     9         54      11.1       17

Bandage

Arm support        10      3    5     2     8     2         17       3.4        6

Wrist support       16      8    6     4    19     4         33       6.7       12

Calliper(s) /half      39      6   24    12     9     6         51      10.5        5

Calliper(s) /full      58     23   65    10     2     6         83      17.0        7

Corset                         24     6     4     1         35       7.2        7

Manual w’chair                  14    19    50     4         87      17.8       41

Electric w’chair                  2     8    21     5         36       7.4       22

Elec. Scooter                    1    17    41     2         61      12.5       28

Breathing help                                 4     4    12     4         24       4.9       14  (day)

Breathing help                                 4     9    23     4         40       8.2       18   (night)

Iron lung * 5 Other 21

Nil appliances                                              81      16.6

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The following tables show responses in relation to aspects of daily living.

The questions asked people to respond in relation to their level of difficult with the task:

Please indicate your level of difficulty with the following activities:

  • Write down the appropriate number and letter in the first column.
  • Tick the second box if it has become more difficult in the last ten years. 1 do not cause you any problem 2 can be managed alone but with difficulty If you answer ‘2’ to this question please ALSO add an additional letter S if this is a slight difficulty; M if it is moderate difficulty or H if it is a high difficulty 3 can be managed with help from others 4 are impossible for you

Walking Ability Number of Participants: 488

ACTIVITY                   LEVEL OF DIFFICULTY                       INCR’D

4 is highest difficulty DIFFIC’Y

2   2     2    2    All                  N                 1  %                 %   3  %  4  %        %                                      *  S   M   H    2                   R

Walking –                 197  40   5  77   76  15  173  35   9  2  41   8  68  249  51 level surfaces

Walking –                  72  14  16  91  105  64  276  57  34  7  54  11  52  320  66 uneven surface

Walking –                 196  40   2  63   65  24  154  32  20  4  46   9  72  222  46 short distances

Walking more                 138  28   8  55   63  57  183  28  18  4  83  17  66  262  54 than 200 m

Climbing stairs     75  15  10  58   95  90  253  52  29  6  80  16  51  317  65

Household Tasks by Level of Difficulty Number of Participants: 488

LEVEL OF DIFFICULTY: 4 is most difficult

All                          No               1  %   2*   2S  2M  2H          3  %    4   %   N/A                                            2s %                               resp

Light tasks              322   66   7   51   42   7     22    8   2    6    1    3     42 washing up

Heavy tasks              102   21   7   80   73  49     43   19   4  104   21    5     49 vacuuming

Light              103   21   8   70   78  38     40   32   7   92   19   10     57 gardening

Heavy               39    8   3   26   46  40     24   25   5  219   45   23     67 gardening

Cooking:              314   64   5   47   32   8     19   13   3   14    3    4     51 Snacks

Cooking              268   55   7   59   38  17     25   20   4   26    5    4     49 Full meals

Shopping:              259   53   7   59   43  13     25   35   7   21    4    6     45 Small

Shopping:              148   30   3   67   58  40     34   67  14   51   10     9     45 Major

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Personal Care by Level of Difficulty Number of Participants: 488

INCR’D

ACTIVITY          LEVEL OF DIFFICULTY: 4 is highest difficulty            DIFFIC’Y

[% of 488]

All 2s               1   %    2*   2S  2M   2H         3  %    4  %   No.  %                              %

Grooming      385   79   5   41   18   5     14   3    0.6   1    0.2  116     24

Getting              313   64   5   74   40   3     25  18    3.7   4    0.8  171     35 dressed

Getting in/              305   63   9   66   50   7     27  13    2.7   6    1.2  188     39 out of bed

Feeding              411   84   2   26   12          8   4    0.8         0   78     16 yourself

Taking a              278   57  12   66   55  12     30  23    4.7   7    1.4  194     40 bath/shower

Using the              340   70  10   47   42   8     22   5    1.0   1    0.2  126     26  toilet

Writing by              341   70  12   44   39  12     22   2    0.4   2    0.4  147     30 hand