The Themes Of Change

Published Date: 02 Nov 2017

Disability has been thought as a limitation or a problem inherent in the individuals until the late 20th century. This is so-called medical model of disability that disability was seeing as being something wrong with the person. However, those attitudes to disability in New Zealand have changed radically. For the most parts, these shifts reflect changing attitudes overseas, in a similar way to the other social policy change.

Solutions to the problem of disability took the form of government and wider society helping to fix or accommodate the problems of those afflicted individuals.

2) Themes of change

The following historical overview and timeline comes from two sources: a 1996 article by Margaret Tennant in the New Zealand Journal of Disability Studies, and a 1997 National Health Committee Report.

Increased survival: In the past many people died at an early age. Changing medical knowledge and technology now enables many people with ill health or physical impairments to live longer. This is one reason why there are more disabled people today than there was in early New Zealand.

Medicalisation of disabled people: With the increase in medical treatments possible, especially after World War II, people’s impairments were seen as treatable in the same way that ill health was treated. This approach focused attention on the impairment of disabled people rather than their wellbeing. As a result, the individual, ordinary life needs of people were often not taken into account.

Trends of best practice: Trends in treatments change over time. Treatments for ill health once in favour may now be considered backward. Similarly, with services for disabled people. For example, segregation of people with intellectual disabilities in institutions was once the norm - this practice is now disregarded, with the emphasis instead on supporting people to live in their communities.

Demographic changes: New Zealand’s population mix has changed significantly since 1840. Throughout the 19th century, young male adults made up most of our population. Today our gender balance is even and we have an ageing population.

Perceptions of stigma: Coming out of the 19th century, there was a negative stigma attached to people with impairments. They were thought to be weaker and less valuable members of society. A moral distinction had emerged between people who deserved support - those impaired by accident or illness - and people born with impairment. Attitudes changed with the impact of disease epidemics (such as tuberculosis and polio) and injuries from World War I. Suddenly, there were people with impairment who were otherwise young, fit and healthy. Their impairment had not been caused by a physical or moral weakness inherent in a person’s genetic makeup.

Support organisations: As organisations focused on specific impairments and support for families grew, so awareness of disabled people and the number of services available increased – such as, the Association of the Friends of the Blind in 1889, the forerunner of the Royal NZ Foundation of the Blind in 1890, CCS in 1935 and IHC in 1949.

2000 onwards

In 2000/2001, the government developed the New Zealand Disability Strategy. The Strategy was based on the social model of disability, which makes a distinction between impairments (which people have) and disability (which lies in their experience of barriers to participation in society).

In 2002 the Office for Disability Issues was set up. Its purpose is to provide a focus on disability across government and to lead the implementation and monitoring of the New Zealand Disability Strategy.

In 2004, the New Zealand Sign Language Bill was introduced into Parliament. This Bill proposed recognising New Zealand Sign Language as the third, official language in New Zealand.

New Zealand has taken a leading role at the United Nations in the development of a convention making explicit the rights of disabled people.

A review of long-term disability support services was begun in 2004. Led by the Office for Disability Issues and working across government agencies, the review aims to improve the fragmentation and incoherence of services as experienced by disabled people.

3) The Strategy

The New Zealand Disability Strategy presents a long-term plan for changing New Zealand from a disabling to an inclusive society. It has been developed in consultation with disabled people and the wider disability sector, and reflects many individuals’ experiences of disability.

Disability is not something individuals have. What individuals have are impairments. They may be physical, sensory, neurological, psychiatric, intellectual or other impairments. Disability is the process which happens when one group of people create barriers by designing a world only for their way of living, taking no account of the impairments other people have.

Along with other New Zealanders, disabled people aspire to a good life. However, they also face huge barriers to achieving the life that so many take for granted. These barriers are created when we build a society that takes no account of the impairments other people have. Our society is built in a way that assumes we can all see signs, read directions, hear announcements, reach buttons, have the strength to open heavy doors and have stable moods and perceptions.

4) Funding

Community Participation services

The Ministry of Social Development also administers the Very High Needs School Leavers programme which provides individually-targeted funding for vocational services for school leavers classified while at school under the Ongoing and Resource scheme as having very high educational needs. The funding is mostly used to pay for Community Participation services.

Day services

The Ministry of Health has a historic practice of funding day services in some regions. In those regions, the Ministry of Health funds people with high needs unable to be supported by the Ministry of Social Development. In most cases, the Ministry of Health funds the full service. In a small number of cases the Ministry of Health ‘tops up’ funding when a Ministry of Social Development -funded community participation service is not able to provide sufficient support for a person with high needs.

Ministry of Health-funded day services are primarily for people aged under 65. However they continue to be funded for existing clients once they turn 65, unless the person no longer wants the service or is assessed as requiring age-related residential care.

The following table summarises the different funding arrangements (these figures are rounded):

Ministry

MSD

MSD

MOH

Service type

Community Participation

Very high needs school leavers

Day Services

Number in service

10,000

590

2,200

Age & disability

people with all types of impairment

age 16-65

people with all types of impairment

age 16-65

people with physical, sensory and intellectual disabilities.

no age limit for people who accessed day services before age 65

Funding model

partial funding

bulk-fund services

providers determine access

capped funding

specified amount

funds individuals who meet eligibility criteria

demand driven

full funding

funds providers for individuals who meet eligibility criteria

capped funding

Total funding

$42 million p a

$10 million p a

$40.3 million p a

2.2

1) Terminology

Language reflects the social context in which it is developed and used. It therefore reflects the values and attitudes of that context, and plays an important role in reinforcing values and attitudes that lead to discrimination and segregation of particular groups in society. Language can therefore be used as a powerful tool to facilitate change and bring about new values, attitudes and social integration.

Here are a few examples of the preferred terminology for English.

Deaf-mute / Deaf / Dumb - people who consider themselves as part of Deaf culture refer to themselves as "Deaf" with a capital "D". Because their culture derives from their language, they may be identified in the same way as other cultural groups.

Mongol / mongoloid - use "person with Down syndrome."

Mentally retarded / insane / learning disabled / brain damaged - use "person with an intellectual disability", or "person with a psychiatric disability".

Suffers from / afflicted with / victim of - "Suffers from" indicates ongoing pain and torment, which is no more the case for most people with disabilities as it is for most people without disabilities. "Afflicted with" denotes a disease, which most disabilities are not.

Victim of – it implies that a crime is being committed on the person who has a disability.

Cerebral palsied / spastic - use "person with cerebral palsy".

Epileptic - use "person with epilepsy" or "child with a seizure disorder".

Dwarf / midget - Some people prefer "little/short", but its best to use "person of short stature".

Handicap - The word "handicap" derives from the phrase "cap in hand", referring to a beggar, and is despised by most people with disabilities.

Do not use "wheelchair-bound" or "confined to a wheelchair". People see their wheelchairs as a convenient mode of transportation, not prisons, and the "bound/confined" phrase belies the fact that many people with motor disabilities engage in activities without their wheelchairs, including driving and sleeping. The proper phrase is "uses a wheelchair".

Other terms to avoid are "physically/mentally challenged", "cripple" or "crippled."

Most disabilities are not a disease. Do not call person with a disability a "patient" unless referring to a hospital setting. In an occupational and physical therapy context, "client" or "customer" is preferred.

Some diseases by legal definition are considered disabilities. Victimization imagery ("AIDS victims") or defining the person by the disease ("she is a diabetic") is inappropriate. Use "person with diabetes" or "people living with AIDS".

2) Attitudes

One in five people in New Zealand reports having a long-term impairment. Because everyone comes from different backgrounds, holds different beliefs and has different needs, there is a great diversity of people who have impairments.

Attitudes have been identified, through consultation, as the major barrier that operates at all levels of daily life in the general population. Attitudes and ignorance make their presence felt as stigma, prejudice and discrimination. In the year to June 1999, disability discrimination was the largest category of complaints to the Human Rights Commission.

Stigma, prejudice and discrimination affect our behaviours. Sometimes the combination of attitudes and behaviours can seem to create almost insurmountable barriers, for example, whole systems or organisations can become a barrier much in the way that institutionalised racism operates.

3) Stereotypes and Barriers

For disabled children, their needs can put big demands, including financial pressure, on their families/whanau.

Disabled people are much less likely to be employed. For instance, the unemployment rate for people with ongoing mental illness is very high. Half of recent complaints to the Human Rights Commission in regard to disability related to employment.

The public service employs a far lower proportion of disabled people than exist in the general working age population, despite equal employment opportunity policies.

Disabled people often have reduced housing options through poverty or factors such as discrimination when neighbours object to supported houses being established in their area.

Despite New Zealand having strong standards for physical accessibility, access to public facilities and other buildings such as marae is poor. On top of that, most public transport is not independently accessible, and car modifications are expensive.

Disabled people are much less likely to have educational qualifications than non-disabled people.

People in higher socio-economic areas are more likely to access and receive support services than people in low socio-economic areas. Reflecting this situation, Maori as well as Pacific people are typically low users of support services.

44% of Maori with a long-term impairment report that they have an unmet need for some kind of service or assistance. 29% of non-Maori with a long-term impairment report an unmet need. The majority of support for everyday activities comes from families.

Poor literacy is a problem for many and is a cause of communication barriers. This problem extends to Braille and sign language literacy.

Disabled people, especially those with psychiatric or intellectual impairments, are often shut out of social networks and full participation in community activities, because people are ignorant or fearful of behaviour they perceive as different.

As a group, disabled people are likely to have lower incomes and fewer financial and family resources than the general population. This economic disadvantage is compounded by the financial cost of disability. The earning potential of families with disabled children can be curtailed by their need to provide support for their children or live and work in areas where they can access family or professional support.

2.3

Services for disabled people have changed over time to reflect society’s changing view of disabled people.

1) Disability Support Service (DSS)

Within a decade, New Zealand’s DSS system has been transformed from one that had a substantial institutional component in 1990 (particularly for people with intellectual disability) to one that is now almost entirely community-based.

Habilitation is a concept similar to rehabilitation, except that it applies to gaining function, health, skills, and experiences for the first time, as opposed to recovering something that has been lost. People who are born with physical impairments, for example, often need physio and occupational therapies to gain motion that develops naturally in others. People who spent their early years in institutions may never have learned fundamental life skills such as cooking, housekeeping and using the public transport system. Habilitation potentially includes a broad range of services designed to promote greater independence.

Comprehensive Assessment and Service Coordination. The first step in developing a habilitative system is performing a comprehensive assessment that focuses on people’s goals and coordinating habilitative services from an array of service systems. This issue applies to all DSS population groups and is addressed in Chapter 6.

Skilled Therapies. Physio-, occupational, speech and language, and psychotherapies can all be critical to promoting function and independence. Though theoretically available to people, access can be a problem, particularly for the many people who get caught between service systems. Boundary issues exist between DSS and the personal health and mental health systems, for example, which can result in significant obstacles to obtaining therapies. In primary and secondary schools, therapies are generally available only on a consultative basis to staff.

Vocational Services. Many people in the DSS system have little or no employment experience and require pre-vocational and vocational services. This topic is addressed below.

Equipment, Technology and Environmental Modification. For many, new technologies and equipment offer opportunities to increase function and independence, but this is an area that challenges the DSS system. New products are often very expensive, and the Ministry must balance access and cost issues as it develops policy in this area. With a greater emphasis on habilitation, it may become possible to link funding of equipment to clear habilitation goals.

2) Enabling Good Lives

This report was written for the Minister for Disability Issues by an independent working group of people who work in the disability sector.

The Working Group proposes that the current centre-based model for day and community participation services be incrementally replaced with a facilitation-based support model. At the heart of the proposed model is the provision of support for disabled people to achieve a ‘good life’ like other New Zealanders, which is reflected in the title of this report Enabling a Good Life. The focus of facilitation-based support would be on enabling disabled people to do everyday things in everyday places’ in communities, rather than on provision of ‘special’ places or activities for disabled people.

The Working Group agreed government support should be provided for people with impairments:

who are socially isolated (don’t have social connections outside the home) or whose participation in communities is limited (or are at risk of this)

who do not have family, whanau or ‘natural’ supports, or

the family/whanau are experiencing undue stress (and the family’s participation is limited or is at risk because of the stresses of caring)

the needs are beyond what the family/whanau is able to meet who are not able to exercise their rights as described in the United Nations Convention on the Rights of Persons with Disabilities

3) facilitation-based support

The facilitation-based support model would actively support disabled people to have an ‘everyday life in everyday places'. It would support people to achieve desirable outcomes such as education and training, employment, being with friends, having relationships and a family, taking part in community and cultural activities.

Self-directed planning & facilitation: a skilled facilitator chosen by the disabled person would assist him or her to build and maintain relationships and support networks in the community, access mainstream community-based services and activities, and identify opportunities to contribute to the community. The facilitator would help the person to identify their aspirations and goals, and develop a plan to achieve them. The level and duration of facilitation support would vary for each person.

The facilitation role would be independent from both funding allocation and direct service provision (e.g. support with personal care, mobility assistance). It would be a joint agency initiative (potentially the Ministry of Health and Ministry of Social Development). There would be regular independent external evaluation to ensure that the facilitator is being responsive to the individual/families within a reasonable timeframe.

Cross-government individualised/portable funding: an individual allocation of funding would be available to the disabled person, potentially on a self-directed basis. This would require all current disability support funding the person (and their informal carers) attracts to be identified, (e.g. day service, community participation, home and community support service, individualised funding, residential, supported living) and ’unpacked’ where this is possible.

Strengthening families/whanau: Families/whanau would be supported to assist the disabled person (e.g. by promoting family-to-family support, and family and whanau collectives. There would be separate funding support for family carers to build integrity into the system, cultivate natural supports, and distinguish the legitimate (but sometime competing) needs of the individual and family.

Community building: mainstream organisations would be supported to address barriers to inclusion that disabled people face, e.g.: the built environment and attitudes of employers, government agencies etc. Most of this work would be done by the facilitator or providers who are enabling people to participate in the community. There may also be support from general disabilities funding, specific initiatives or employing ‘change agents’.

4) Transitions from school

Disabled young people who are transitioning out of school and into adult life, would make a good starting point, as they are already at a point of change in their lives. The questions that will be asked and plans for adult life that will be developed, as part of facilitation-based support, are the kind that would be asked by any young person at this point in their lives.

Young disabled people in New Zealand are generally distinct from older disabled people in their experiences (e.g. of mainstream schooling) and consequently their expectations are often different from those of earlier generations of disabled people. This means that young people typically have greater readiness for a support model that allows greater independence. Many of them are asking for these types of changes (and so have their families/whanau).

5) Geographic centres or regions

Implementation could begin in identified geographic regions or towns, and be expanded to other locations as capacity allowed. This would mean different ideas could be tested, and more detailed costings identified, and would be consistent with the approach used by the Ministry of Health’s ‘New Model for Disability Supports’ in the Bay of Plenty.

The Ministry of Health is developing a proposal for new Community Living options for disabled people currently living in residential services. There may be opportunities to test the Community Living and facilitation-based support together as the people concerned will need new arrangements for all their supports in the community.

6) Aged related service

The disabled elderly people will have varying care needs, ranging from help with household tasks to full nursing care. To assess future needs, it is necessary to evaluate the current options for care of the disabled elderly. These range from residing in the community with help from community services and family members, to institutional care. Two levels of institutional care for the elderly are available in New Zealand: geriatric hospital care and rest home care. Rest homes cater for a less disabled group.