"Disabilities must not consign the young to nursing homes"
Two members of my group currently live in nursing homes for the elderly, they are in their 30's and 40's and have spina bifida and cerebral palsy respectively. They have no choice over when they get up in the morning and when they go to bed at night. They have no choice over what they eat or when they eat it. They have to jump through the most extraordinary hoops to attempt to get the funding needed to support them to live in the community, and they may not get the funding. Most of the staff working in disability services are able-bodied. They can take for granted what these women can't, the basic right to live how they wish, and they are paid to make decisions on behalf of people with disabilities who often would be quite capable of running their own lives, if they had access to appropriate funding.
http://www.theaustralian.news.com.au/story/0,20867,20418182-23289,00.html
Disabilities must not consign the young to nursing homes
Trevor Parmenter
September 16, 2006
THE plight of the increasing numbers of young people with severe disabilities being dispatched to nursing homes is reminiscent of the way we institutionalised young people with both developmental and acquired disabilities in the early 20th century for both their protection and the protection of society.
Overcrowding, a sterile lifestyle and episodes of brutality and assault led to public enquiries from which emerged the international deinstitutionalisation movement of the late 1960s.
This movement was picked up in Australia in the 1980s, although over 5000 people with severe intellectual and other developmental disabilities currently remain in large nursing home environments across Australia, supported by government funding.
In due course new principles were developed, designed to allow people with a disability to be acknowledged as equal citizens with the same rights to quality of life as every other Australian.
People in the general community may well ask what is wrong with young people being cared for in a nursing home designed for people who are in the last years of their life. Don't they need the support that is readily available in nursing homes?
This somewhat superficial reasoning ignores the fact that people who are ageing and are admitted to nursing homes are in the last years, sometimes last months, of their lives; whereas a young person who has had a traumatic brain injury may have a normal life expectancy of several decades. They certainly do not need a palliative care environment for the rest of their lives.
Put yourself in the shoes of Jenny, a vibrant young woman with cerebral palsy who successfully completed high school in a country town in a regular class. She made many friends of her own age and was involved in several extra-curricular activities, including artistic pursuits. Upon leaving school there were no post-school options available to her.
Her parents, who are ageing and in ill health, were not able to continue providing the intensive physical support Jenny needed every day. Their only resort was to have Jenny placed in an aged care nursing home 60km away. She is now isolated from her friends and family, within an environment that may help with some of her physical needs, but none of her emotional or psychological needs.
And unless we as a community can provide a better option, Jenny will stay in this environment for up to another 40 years with little motivation to get out of bed each day. Is this the Australia, rich in resources, we wish her to live in?
Persistent agitation from families, support groups and a few caring politicians has prevailed upon all jurisdictions to attempt to unravel the inequities in government policies that have led to the predicament of Jenny and others.
State, territory and commonwealth governments have built up a "silo" mentality over the years in the areas of disability and ageing service provision. In the early 1990s one of the first initiatives of the Council of Australian Governments (COAG) was the signing of the first Commonwealth State/Territory Disability Agreement (CSTDA), which was touted as a way to avoid duplication of services.
However, the situation is somewhat similar to the shambles we see in health service provision, where "buck passing" is rife.
COAG recently agreed to provide new matched funding of $244 million to jointly establish a capped, five-year program managed by the states and territories. The activities that will be funded include:
Assessments of care needs,
Negotiating and providing appropriate alternative models of long-term care options,
Monitoring program outcomes, and
Sharing information between jurisdictions and the disability sector on the performance of new models of care.
To some extent this initiative, to be administered through departments of disability, breaks down the barriers between ageing and disability service provision where a person in a nursing home (a commonwealth responsibility) cannot be considered for disability support (a state/territory responsibility). This situation highlights the artificial barriers which have frustrated families and service providers since the inception of the CSTDA.
My concern is the degree to which the bureaucracies will drive the program without adequate and meaningful consultation with the people who are most affected by the circumstances in which they find themselves.
A basic principle to be followed is the recognition that there are a variety of needs dependent upon the range of individual circumstances. For too long we have imposed a "one size fits all" mentality to the way support services are funded.
Performance needs to be measured against the degree to which a service has improved the quality of the life of a person in need, rather than against whether the service provider has conformed to a set of administrative processes alone. The service must be accountable to the consumer of the service.
Another worry is that the funds allocated will only meet the needs of a proportion of the people currently affected. And the rate of institutionalisation is increasing.
The basic premise for all services is that they should empower the person with a disability to make decisions as to how they wish to lead their lives. Choice and decision making are key factors in a person's quality of life.
Whilst it is critical that access to important long-term rehabilitation support is there when required, this should be provided as far as possible in natural settings to avoid the stigma associated with being a life-long "patient".
We need to recognise that it is not the disability that defines the person, but their inherent humanity. Current demographic trends indicate most of us will be at risk of acquiring a disability in our lifetime. What type of support shall we demand?
Trevor Parmenter is professor of developmental disability in the faculty of medicine at the University of Sydney
http://www.theaustralian.news.com.au/story/0,20867,20418182-23289,00.html
Disabilities must not consign the young to nursing homes
Trevor Parmenter
September 16, 2006
THE plight of the increasing numbers of young people with severe disabilities being dispatched to nursing homes is reminiscent of the way we institutionalised young people with both developmental and acquired disabilities in the early 20th century for both their protection and the protection of society.
Overcrowding, a sterile lifestyle and episodes of brutality and assault led to public enquiries from which emerged the international deinstitutionalisation movement of the late 1960s.
This movement was picked up in Australia in the 1980s, although over 5000 people with severe intellectual and other developmental disabilities currently remain in large nursing home environments across Australia, supported by government funding.
In due course new principles were developed, designed to allow people with a disability to be acknowledged as equal citizens with the same rights to quality of life as every other Australian.
People in the general community may well ask what is wrong with young people being cared for in a nursing home designed for people who are in the last years of their life. Don't they need the support that is readily available in nursing homes?
This somewhat superficial reasoning ignores the fact that people who are ageing and are admitted to nursing homes are in the last years, sometimes last months, of their lives; whereas a young person who has had a traumatic brain injury may have a normal life expectancy of several decades. They certainly do not need a palliative care environment for the rest of their lives.
Put yourself in the shoes of Jenny, a vibrant young woman with cerebral palsy who successfully completed high school in a country town in a regular class. She made many friends of her own age and was involved in several extra-curricular activities, including artistic pursuits. Upon leaving school there were no post-school options available to her.
Her parents, who are ageing and in ill health, were not able to continue providing the intensive physical support Jenny needed every day. Their only resort was to have Jenny placed in an aged care nursing home 60km away. She is now isolated from her friends and family, within an environment that may help with some of her physical needs, but none of her emotional or psychological needs.
And unless we as a community can provide a better option, Jenny will stay in this environment for up to another 40 years with little motivation to get out of bed each day. Is this the Australia, rich in resources, we wish her to live in?
Persistent agitation from families, support groups and a few caring politicians has prevailed upon all jurisdictions to attempt to unravel the inequities in government policies that have led to the predicament of Jenny and others.
State, territory and commonwealth governments have built up a "silo" mentality over the years in the areas of disability and ageing service provision. In the early 1990s one of the first initiatives of the Council of Australian Governments (COAG) was the signing of the first Commonwealth State/Territory Disability Agreement (CSTDA), which was touted as a way to avoid duplication of services.
However, the situation is somewhat similar to the shambles we see in health service provision, where "buck passing" is rife.
COAG recently agreed to provide new matched funding of $244 million to jointly establish a capped, five-year program managed by the states and territories. The activities that will be funded include:
Assessments of care needs,
Negotiating and providing appropriate alternative models of long-term care options,
Monitoring program outcomes, and
Sharing information between jurisdictions and the disability sector on the performance of new models of care.
To some extent this initiative, to be administered through departments of disability, breaks down the barriers between ageing and disability service provision where a person in a nursing home (a commonwealth responsibility) cannot be considered for disability support (a state/territory responsibility). This situation highlights the artificial barriers which have frustrated families and service providers since the inception of the CSTDA.
My concern is the degree to which the bureaucracies will drive the program without adequate and meaningful consultation with the people who are most affected by the circumstances in which they find themselves.
A basic principle to be followed is the recognition that there are a variety of needs dependent upon the range of individual circumstances. For too long we have imposed a "one size fits all" mentality to the way support services are funded.
Performance needs to be measured against the degree to which a service has improved the quality of the life of a person in need, rather than against whether the service provider has conformed to a set of administrative processes alone. The service must be accountable to the consumer of the service.
Another worry is that the funds allocated will only meet the needs of a proportion of the people currently affected. And the rate of institutionalisation is increasing.
The basic premise for all services is that they should empower the person with a disability to make decisions as to how they wish to lead their lives. Choice and decision making are key factors in a person's quality of life.
Whilst it is critical that access to important long-term rehabilitation support is there when required, this should be provided as far as possible in natural settings to avoid the stigma associated with being a life-long "patient".
We need to recognise that it is not the disability that defines the person, but their inherent humanity. Current demographic trends indicate most of us will be at risk of acquiring a disability in our lifetime. What type of support shall we demand?
Trevor Parmenter is professor of developmental disability in the faculty of medicine at the University of Sydney