Southern Health Melbourne, Australia.
Acquired Brain Injury: Slow to Recover Program (ABI/STR)
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An innovative
rehabilitation and support program for young people who have suffered a
catastrophic brain injury. Southern Health Melbourne, Australia. |
Click on a link below to view the relevant section
Click here to go to the ABI:STR Report
Introduction
In 1998, Southern Health, Community Health Services became
responsible for the development and ongoing management of the Acquired Brain
Injury, Slow To Recover (ABI STR) program. This program provides rehabilitation
support for highly dependent persons with acquired brain injury (ABI) and their
families who are not in receipt of compensation throughout Victoria.
Generally, recovery following brain injury is greatest over the early months after the injury, with rate of improvement then declining rapidly. In people with severe ABI, improvement is very much slower than this and continues for considerably longer. There is a paucity of studies of the long-term outcomes and potential for these clients, and the ABI: STR Program is already contributing significantly to knowledge and evidence-based practice.
While the literature suggests that significant neurological improvement in these clients may continue for 18 months to 2 years, experience of the Program suggests that appropriate rehabilitation services may continue to achieve functional gains for some clients over longer periods of time, over and above the improvement that occurs naturally as the person adapts increasingly to their disabilities. In time, functional improvement plateaus and the person's daily activities are largely sufficient to maintain their level of function. This is the point at which the long term maintenance phase of the program commences with therapy substantially reduced or discontinued, although some people may need a low level of ongoing therapy to prevent deterioration. This low level of therapy may be provided by allied health assistant/attendant care staff under supervision of a qualified therapist.
In the weeks or months after a severe ABI, the client may remain bedfast or dependent on total care before recovering to a level where active rehabilitation is possible. While some clients have multiple medical problems, many will be medically stable within a few weeks and do not need acute hospital care beyond this time. Often, physical, cognitive and possibly behavioural dysfunction limits the person's ability to interact with their surroundings or participate in self-care or therapy. Clients at this interim stage need intensive nursing and often passive therapy to prevent deterioration, maintain physical functioning and maximise the potential for later recovery.
With support from the Program, this interim care may be provided in a nursing home. While mainstream facilities such as nursing homes cannot routinely provide the level of care needed, the Program can purchase additional care and ensure that the client's progress is monitored so that active rehabilitation can be introduced when and where appropriate. This arrangement allows time for natural recovery to occur and for treatment teams to assess the client's potential. For those clients for whom there seems to be little or no rehabilitation potential, it also provides relatives with time to adjust to the situation and plan for the future.
As natural recovery progresses, clients become increasingly able to interact with their environment and participate actively in physical and cognitive programs. The progression is similar to that experienced by most clients after brain damage, but the speed of change and the degree of persisting disability are very different. Clients on the ABI STR Program generally progress slowly towards limited quality of life and independence. In the long term, some achieve a level of independence in self-care or are supported by their family and friends to live in the community with the aid of ongoing, established support services. If the level and rate of recovery increases, the potential exists within the Program to transfer clients to faster-stream rehabilitation. Others require a substantial amount of attendant or nursing care after their natural recovery has plateaued, and some will need ongoing care and support from the ABI: STR Program to complement funding from other State, Commonwealth, local government and non-government programs.
After the initial period of slow-stream rehabilitation, most clients will require therapy in the longer term, to maintain the level of function and independence gained or to maximise further potential for functional improvement. In some, recovery may plateau for an extended period, before recommencing slowly, possibly indicating the need for a further episode of targeted therapy and/or new therapies and treatments such as the muscle relaxant therapies of botulinum toxin or baclofen.
Aim
The aim of the Slow To Recover Program is to:
The Client Group
The ABI: STR Program caters specifically for a small but significant group of recently brain-injured younger adults who are not eligible for compensation, and are distinguished by:
These clients and families require individual case management and care coordination over a prolonged period, involving a wide range of clinical, psycho-social, environmental, economic and family issues. By definition, no client is too severely brain injured or too disabled to receive slow to recover services. (although some may be unable to participate in active rehabilitation or the lack of resources or priority may limit their opportunity to receive services.).
People with moderate ABI, who need rehabilitation for a few months to regain a level of independence that enables them to return to the community, are generally supported by mainstream acute and sub-acute rehabilitation services. The complex and long-term needs of ABI: STR Program clients place them beyond the capacity of these mainstream services.
ABI: STR Program Eligibility Criteria
To be eligible for funding by the ABI:STR Program, an applicant must
satisfy all the following criteria.
Medical:
Age:
Legal:
Social circumstances:
Management:
To be eligible for funding for long-term maintenance services, the client must:
Priority
Priority will be given to people between the ages of 5 and 50 years
with the most complex disability and support needs. There may, for instance, be
a need to purchase a specific environment because of the person's youth or
because of family commitments and responsibilities (eg. a young family and
parenting responsibilities)
Other factors are considered when determining priority such as whether the
person is awaiting discharge from an acute hospital or whether they have
responsibility for children under the age of 15 years and or other dependants.
Access to the Program is also based on:
Application
From the 1st October 1999 all applications must contain an
Application form (Appendix 1) including a brief history, a Consent form
(Appendix 2) and a Declaration of Compensation form (Appendix 3) completed and
returned to,
Disability Services Manager
ABI STR Program
Bunurong Community Health Service
4th Floor, 229 Thomas Street,
Dandenong, 3175
Phone: (03) 8792 2396 or 8792 2397
Fax: (03) 8792 2206
Copies of these forms can be found in the appendices of this document or can be requested from the Manager, ABI STR Program.
Process
The process of application for ABI STR services is as follows:
If client approved ABI STR services
If client not approved ABI STR services
Appeal or Grievance Process
An applicant or an applicant's representative can appeal a decision of ABI:STR
Service Panel providing any additional information to support the application.
Your appeal is to be in writing and addressed to:
Chairman, ABI:STR Committee
C/- Manager ABI STR program
Bunurong Community Health Service
4th Floor, 229 Thomas Street,
Dandenong, 3175
Phone: (03) 8792 2396 or 8792 2397
Fax: (03) 8792 2206
Should a grievance still exist, an appeal can be made to either the:
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Health Services Commissioner |
or |
The Ombudsman |
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30th
Floor, 570 Burke Street
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Level 22, 459 Collins Street Melbourne Vic 3000 Phone: 9613 6222 |
Application Form
This form is to apply for Acquired Brain Injury: Slow to Recover services.
Applicants and families should understand that by completing this application,
it does not guarantee a service. The ABI STR Program has a panel of independent
rehabilitation practitioners that will decide on the merit of this application
for slow to recover services taking into account the applicants eligibility,
priority and the resources available to provide services.
| Forms (open in a new window) |
| Application Form |
| Consent Form |
| Declaration of Compensation Form |
| Download all three of the above forms |
A REPORT: Acquired Brain
Injury: Slow to Recover Program
Click on a
link below to go directly to that section.
Click here to download a copy of
this report in PDF format
Rapid advances in medical technology and health services over recent years have enabled people who suffer catastrophic brain injury not only to survive their injury but to survive with the potential to recover levels of function not previously thought possible. The complex and highly individualised needs of this small but growing client group, however, together with their slow rate of recovery and their persisting long-term dependency and disability, have exceeded the current capacity of the health service system to respond adequately and appropriately.
The Acquired Brain Injury: Slow to Recover (ABI: STR) Program has been developed by the Department in conjunction with professionals in the field of acquired brain injury to remedy this situation. The Program is possibly unique in that it is designed as a compassionate and ethical rationing of limited resources to a highly specific group of clients. It has the potential to establish health service system benchmarks in achieving maximal integration of the resources of the mainstream health service system with a brokerage capacity to purchase particular and individually targeted services. It provides each client with a total package of care that is responsive to their immediate needs and capable of change over time, as they regain function and as they age, and it supports the families who provide long-term care.
The Ministerial Implementation Committee on Head Injury identified in 1993 the specific and different needs of people with ABI and high levels of dependency, and two specialist services were initiated: the ABI Case Management Service and the ABI Behavioural Consultancy Service, which contributed towards meeting those needs. The Department then commissioned a study by Health Solutions Pty Ltd with consultant rehabilitation physician Associate Professor John Olver, which led to the development of the pilot ABI: STR Program and its consolidation into a fully operational service. Following a competitive tendering process, the ABI: STR Program is now established as a permanent program under the auspices of the Southern Health Care Network.
The success of the Program over its first two years has exceeded expectations. Many of its profoundly disabled clients have achieved unanticipated levels of function, independence, and reintegration into their communities. A number have returned home to their families. With the recent tendering out of the Program, its operation within the mainstream health service system will now enable it to expand its influence on and integration with mainstream services.
I welcome this report which documents both the achievements to date and the standards for ongoing service delivery of the Program.
Rob
Knowles
Minister for Health, Minister for Aged Care
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The Acquired Brain Injury: Slow to Recover (ABI: STR) Program has been established to provide specific services to a small and generally younger group of people with catastrophic acquired brain injury (ABI) resulting in the most profound physical and cognitive disability and, in consequence, the most complex care needs. Until recent years, very few people with such severe injury survived, and the existing service system does not address their needs.
These people require specialist and sometimes lifelong medical, nursing and allied health care. Existing health and long-term care funding arrangements were insufficient for those without employment or road traffic compensation or coverage. The slow recovery and high dependency of these clients meant that inpatient and residential care services were unable to provide long-term clinical care and accommodation that was adequate and age-appropriate.
The ABI: STR Program has developed a unique model for the delivery of targeted and responsive rehabilitation and long-term maintenance services to people with severe ABI. It provides for brokerage of specific services for individual clients to enable the purchase, over time, of rehabilitation and long-term maintenance services which are clinically, socially and geographically appropriate.
The Program aims to maximise clients’ independence within the limits imposed by their injury, and to minimise their marginalisation. It respects the strongly held view of families that people with ABI neither want nor benefit from services that isolate them from the community. The Program enables its profoundly disabled clients to be integrated into mainstream services and, so far as possible, back into the community. Many of the Program’s clients to date have, with appropriate support, been able to return home to their families.
The Program evolved out of a study commissioned by the Department from Health Solutions Pty Ltd. A pilot program was developed within the Disability Services Program, managed by Brian Hardy with Joan Snyder and Margaret Smyth, and then transferred to the Aged Care Program, where it was consolidated into an operational framework under the leadership of Rosemary Calder with Murray Gee and Jacinta de Souza. The Program development and operation has been guided by the ABI: STR Program Committee under my Chairmanship. Members of the Committee represented major service providers and consumer applicants. Following a competitive tendering process, the Program is now established as a permanent program under the auspices of the Southern Health Care Network.
Funded with a fixed total budget, the Program purchases individually tailored care packages to meet the widely differing needs of clients with severe ABI. Costs for a client may be high over the first two years to cover slow-stream rehabilitation and the provision of specialised equipment and home modifications. After this, generic services provide long-term accommodation support, with the Program providing any additional therapies and other assistance needed to maintain the client’s level of independence.
Before the advent of the ABI: STR Program, many people with severe ABI remained, by default, for long periods in acute hospital beds. Younger adults were often moved into aged care nursing homes. Some were sent home with few supports, creating a heavy emotional and physical burden for their grief-stricken families. Few received even minimal rehabilitation services, despite the knowledge that appropriate therapy could achieve some gains in independence. Often the lack of appropriate care has meant that these people, far from improving, actually deteriorated unnecessarily, developing intractable but avoidable complications such as limb contractures and bed sores.
The ABI: STR Program is intended to prevent such situations from occurring again in Victoria.
The Program is highly cost-effective. In purchasing care that is appropriate, it avoids the significant inappropriate costs previously incurred in acute hospitals and other settings, including Commonwealth-funded residential care. Given the near-normal life expectancy of the predominantly young clients of this Program, even small improvements in function will have enormous cumulative benefits not only in quality of life for the client and carers, but also in the long-term care and support costs to the community.
This unique Program is also identifying and supporting evidence-based practice for the optimum management of clients with severe ABI, and extending the currently very limited knowledge of what is possible for these slow-to-recover clients. Already, Program outcomes are demonstrating that intervention at the earliest opportunity dramatically increases the potential for rehabilitation and gains in function, far beyond that expected on the basis of previous practice. A significant proportion of clients who would have previously required long-term nursing home care have, with the Program’s support, been able to return home to their families and a vastly improved quality of life.
For the Program to continue and build on its successes to date, a number of issues demand attention. Growth and demand will need to be monitored, case management skills developed across the State, and professional education and awareness fostered to ensure prompt and appropriate referral. Most urgent, however, as more and more clients pass through the Program, and as family carers grow older, is the fast-expanding need for facilities providing appropriate respite care and long-term, age-appropriate supported community accommodation.
This document, written by Dr Angela Kirsner in conjunction with Ms Rosemary Calder, Mr Murray Gee and myself, charts the Program’s development, defines its objectives, client group and structure, reports its considerable successes to date, and outlines its future directions.
Associate
Professor John Olver
Chairman, ABI: STR Committee
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The Acquired Brain Injury: Slow to Recover (ABI: STR) Program has grown out of a number of Victorian government initiatives in the area of rehabilitation and ABI over the past decade and has been a priority and an early initiative towards development of a comprehensive and integrated statewide rehabilitation service system. The ABI: STR Program will form an integral part of that system as a discrete, specialist service, with additional responsibility for the long-term therapeutic maintenance of some clients.
In 1990, Health Department Victoria released a Position Statement on Rehabilitation articulating the Department’s view of the health sector’s responsibilities and involvement in rehabilitation for the 1990s. The report recognised the difficulty of establishing distinctions across the rehabilitation and disability services fields, compounded by the multiplicity of funding and regulatory agencies and considerable sharing of roles and responsibilities. It found that service development and funding responsibility and accountability arrangements were often unclear, not just between levels of government and between the government and non-government sectors, but also at the level of State Government agencies.
The report noted the importance of the Head Injury Impact Project underway at that time, and committed the Department to considering the Project’s recommendations.
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In 1991, the Aged Care Program within the Department conducted a survey to identify younger residents of nursing homes. Age and sex data were drawn from the Commonwealth data base, and a reported diagnosis for the younger clients identified was obtained through a telephone survey. The survey identified 282 nursing home residents under 60 years of age, of whom 86 (31%) had ABI. A further 35 people with ABI were identified as long-stay patients in acute hospitals.
These nursing home figures were confirmed in 1995 by A National Research Project Examining the Placement of Younger People with a Disability in Nursing Homes for the Aged, which identified 87 people aged under 60 years in Victorian nursing homes whose primary disability was attributed to ABI.
The Head Injury Impact Project, undertaken in 1988 by Health Department Victoria and Community Services Victoria in conjunction with the Traffic Accident Commission (TAC) to look at the incidence and implications of head injury in Victoria, published its final report in 1991. Focussing on the population under 65 years of age, the project sought to identify the numbers of Victorians with ABI from head injury and their service needs, and to develop a strategy plan for service development. It found that:
The Project reported shortfalls in almost all areas of service provision, including:
The report set out a comprehensive Head Injury Services Plan with the stated aim of bringing the entire system to a high standard and ensuring that, as far as possible, all people in need could receive the same high quality of service. The Head Injury Services Plan identified eight priority areas and made 41 recommendations, which are included in Appendix 2: of this document. In particular, it was recommended that:
It was estimated that implementation of the package of recommendations would cost up to $7 million capital (over three years) and $15 million recurrent (when fully implemented), with at least six (then) departments/agencies sharing responsibility for recurrent funding.
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The Ministers for Health, Community Services and Transport accepted these recommendations, and in 1992, MICHI – the Ministerial Implementation Committee on Head Injury – was set up under the chairmanship of Bishop Michael Challen and supported by the Brotherhood of St Laurence. MICHI’s task was to implement the Head Injury Services Plan.
After considerable debate, the decision was made that ABI services should be integrated into mainstream services, respecting the strongly held view of families that people with ABI neither wanted nor benefited from services that isolated them from the community. MICHI’s overarching objective was, then, to provide leadership in this integration and ensure that people with ABI had access to all appropriate Government-funded services, both generic and specialist.
TAC agreed to provide $2 million in quarterly instalments over one year for services with specific outcomes for consumers, and MICHI allocated these funds to more than 20 projects addressing high priority recommendations and aimed at improving access to services. The non-recurrent nature of the funding meant that ongoing projects could not be established.
Nearly half the funding – $915,000 over three years – was committed to the ABI Case Management Project (see below), to pilot case management services to people with ABI as a result of head injury. Other projects were concerned with appropriate accommodation for people with ABI, and with education, information and support for professionals and families of people with ABI (see Appendix Appendix 3: for a list of projects funded).
Convened for 12 months, MICHI had neither the resources nor the time to address all the Head Injury Services Plan recommendations. The committee focused on actions that met the greatest need or were best able to achieve change within the service system, and it identified a number of remaining issues that urgently needed to be addressed, including:
The report noted that some patients with ABI had spent two years or more in acute hospital because of lack of a suitable discharge option; others had spent much longer periods in a psychiatric hospital; an estimated 200 younger people with high support needs were in geriatric nursing homes; and some were forced to live with families though this was not their preference and the families were ill-equipped to take on such complex care.
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Given the decision that people with ABI should be treated within the mainstream health system, additional funding was needed to meet the specific needs of these clients and to provide individually packaged and coordinated services. The Case Management Project was therefore set up to target the post-acute care of clients with moderate to severe ABI, focussing initially on those not in receipt of compensation, to facilitate their smooth reintegration into the community.
Melbourne Citymission was invited to auspice the ABI Case Management Service and the project began early in 1993. The brief included education of the system, to ensure that people with an ABI were identified early and the case management team called in as part of discharge planning. Over its first three years, the ABI Case Management Service improved access to clients soon after admission and evaluation showed it to be highly successful in supporting clients following discharge from acute settings, but it lacked resources to create new options.
Points emphasised in the evaluation of the pilot service included the following:
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The ABI Case Management Service continues to provide a referral and care planning service to meet the complex needs of clients with ABI. There remained, however, a small group of clients with severe brain injury who were very difficult to place, required prolonged high levels of clinical care, and fell outside the criteria of Disability Services and of Mental Health. These clients required funding beyond the means of existing programs. By default, they either remained in acute hospital beds or were discharged to a nursing home or in some cases a psychiatric institution.
To address this problem, the Department in 1994 contracted Health Solutions Pty Ltd, with rehabilitation physician Dr John Olver as consultant, to investigate the requirements for slow-stream rehabilitation and long-term maintenance services for younger Victorians with severe ABI. The study was commissioned by Mr Brian Hardy, Manager, Physical and Sensory Disabilities, within the Disability Services Program in the Department, who chaired the project steering committee.
The Health Solutions report was presented in June 1994. It outlined a model that involved individually tailored packages to support ongoing assessment and slow-stream rehabilitation over 6 to 18 months, with services targeted to meet the individual's needs while natural recovery continued. Over this time, it was anticipated that an optimum level of independence would be achieved (although experience on the Program to date suggests that a longer period of rehabilitation, up to two years or more, may be indicated for some clients). The client would then access alternative support services, such as long-term accommodation support or additional long-term services to maintain the level of function achieved and meet most of the ongoing support needs.
The model proposed that:
In 1994, the Minister for Community Services gave a commitment to continuing support for people with ABI at the “Way Ahead Workshop”. A Departmental ABI Working Party was established to ensure policy and program development for people with ABI across all Departmental divisions. Disability Services Division provided administrative support, to develop a strategic plan for ABI-related service development within the Department and to consolidate the work resulting from the MICHI process.
Challenges facing the Department at this stage included:
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In March 1994, the Positive Approaches to Challenging Situations (PACS) Project began under the auspice of the Bouverie Family Therapy Centre. The project was funded by the Department for a period of two years, with an annual budget of $125,000, to provide consultancy to service providers working with people with ABI whose behaviour is challenging to others. Following a tender process, the auspice was transferred in October 1997 to Bethesda Hospital (now the Bethesda Rehabilitation Centre of Epworth Hospital), and the program became known as the ABI Behavioural Management Service.
Staff including neuropsychologists and clinical psychologists with appropriate expertise provide behavioural management services to clients with ABI, aged between 18 and 65 years, whose behaviour causes distress. This may include aggression, self-harming, inappropriate social behaviours or withdrawn behaviour. The service also supports families affected by the behavioural changes and staff working with the clients. Assistance may take the form of telephone or face-to-face contact, referral to appropriate agencies, training sessions for staff, families and carers, written information, and assistance in accessing scientific literature.
In early 1996, the Minister for Health and for Aged Care, the Hon Rob Knowles, with the support of the Minister for Community Services, the Hon Denis Napthine, sought the approval of Cabinet for a discrete funding program to develop a service program targeting the needs of people who have severe brain injury, are difficult to place, require prolonged high levels of clinical care, and fall outside the criteria of Disability Services and of Mental Health. Cabinet approved funding to reach a total of $5 million per annum over 5 years.
This funding made possible the establishment of the ABI Slow to Recover Program, initially known as the ABI Slow-Stream Rehabilitation / Long-Term Maintenance Program. The aim was to develop, based on the Health Solutions proposal, a model of service delivery that would redress the difficulties faced by people with severe ABI in accessing the level and type of rehabilitation, equipment and support they required.
Following development of a pilot program within Disability Services, the Program was transferred in 1996/7 to the Aged, Community and Mental Health Division of the Department, which is responsible for extended care services including rehabilitation and long-term care. Design and implementation of the permanent Victorian wide ABI: STR Program was undertaken by the Aged Services Redevelopment Unit, with expert professional advice provided by Associate professor Dr John Olver together with members of the community health, medical rehabilitation and allied health fields. The Program has been fully implemented over its initial two years. On 26 October 1998 responsibility for the Program was transferred, as the result of a competitive tender process to, Southern Health, a major hospital and community health service in the South Eastern suburbs of Melbourne.
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The Non-Government Disability Training Unit was given responsibility, under a three-year Services Agreement with the Department, for coordinating training services to disability services funded by the Department. One project entailed developing a documented information and training strategy to enhance access and quality of services for people with ABI, and in November 1996 it released the report ABI Information and Training Strategy.
The report identified 10 key principles for an integrated strategy; made 13 recommendations to improve the utilisation of existing information and training, and to fill identified gaps; and set out a model based on:
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In 1996-7, the Department funded a working party of the Australasian Faculty of Rehabilitation Medicine (Victorian Branch) to conduct a review of rehabilitation services in Victoria and make recommendations for the future.
The Working Party’s report, Rehabilitation into the 21st Century: A Vision for Victoria, proposed a model for service delivery across the State. It specifically identified the need for services for people with severe traumatic brain injury:
Slow-stream rehabilitation is necessary for individuals with complex multiple conditions and those with significant traumatic injury requiring prolonged recovery in an inpatient or specialist nursing environment before active rehabilitation can be initiated. It comprises the same components as intensive rehabilitation but is of lower intensity and longer duration, with greater emphasis on specialised nursing care, establishing communication and basic living skills, maintaining joint range and minimising complications. Patients may improve to require more intensive rehabilitation or may be discharged to community housing or supported accommodation or remain in long-term care. All will require ongoing input to prevent complications and maintain function. (p.39)
The report emphasised the need for rehabilitation planning to:
To ensure continuity and flexibility of care, the report recommended that funding for individuals needing rehabilitation should be based on a sequence of care, with the ability to purchase this care whenever it is needed (in contiguous or disconnected episodes) and wherever it is needed, including purchase of case-management services for a long-term client.
The report was launched in December 1997 by the Minister for Health, the Hon. Rob Knowles, who committed the government to implementing its recommendations. The Department has established an expert working party to steer this implementation.
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The first two years of operation of the ABI: STR Program have demonstrated that there is a significant shortfall in services available to meet the rehabilitation and long-term support needs of younger people with severe disability resulting from stroke. The National Stroke Strategy, released in August 1997, and the Victorian Stroke Strategy, released October 1997, should address these issues.
The National Stroke Strategy, developed by a taskforce that included medical and allied health professionals with expertise in stroke and funded by the National Health and Medical Research Council, aimed to respond to and support the needs of people with stroke through acute care, rehabilitation and community care, as well as addressing stroke prevention and the needs of carers.
In the area of rehabilitation and community care, the document highlighted the need for:
regionally based, high quality and coordinated stroke rehabilitation services, and long-term support and maintenance for patients with stroke and their care givers [with] ready access to a seamless continuum of care, through acute care, rehabilitation, and community care.… delivered in appropriate setting/s for as long as is appropriate for each individual patient.
The document recognised that:
Nursing home and hostel residents with stroke have particular needs, which should be recognised in their management. Education and awareness of nursing staff is of great importance. The level of independence and quality of life of many of these people, and the ease of nursing care, will be improved by some specific rehabilitation and ongoing maintenance therapy.
The goals and targets relevant to slow-to-recover clients included the provision of continuity of care for stroke patients throughout the continuum of stroke rehabilitation and care, and the establishment by acute stroke units, stroke rehabilitation units and primary care providers of a program of integrated care for long-term follow-up of all stroke patients, to ensure that patients’ needs are being met and that they receive continuity of care. The Strategy also proposed that people with residual disabilities, including those in nursing homes and hostels, should have access to ongoing therapy to maintain independence, mobility, communication, cognitive functioning and quality of life.
The Victorian Stroke Strategy was compiled by a taskforce established by the National Stroke Foundation and the Department of Human Services to apply the national goals and recommendations to the Victorian situation. It noted the difficulty of accessing adequate rehabilitation services for “severely affected slow track patients”, and the lack of rehabilitation services in nursing homes, which could have a significant place in improving mobility and quality of life. Recommendations included support for rehabilitation funding which would facilitate access for all patients to the full range of rehabilitation services appropriate to the needs of each, with the ability to move smoothly from one setting to another.
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People with moderate ABI, who need rehabilitation for a few months to regain a level of independence that enables them to return to the community, are generally supported by mainstream acute and sub-acute rehabilitation services. The complex and long-term needs of ABI: STR Program clients place them beyond the capacity of these mainstream services.
The ABI: STR Program caters specifically for a small but significant group of recently brain-injured younger adults who are not eligible for compensation, and are distinguished by:
These clients require individual case management and care coordination over a prolonged period, involving a wide range of clinical, psycho-social, environmental, economic and family issues. By definition, no client is too severely brain injured or too disabled for the Program (although some may be unable to participate in active rehabilitation).
The Program targets clients in the younger age groups (excluding very young children lees than 5 years old), for whom age-appropriate services have previously been largely unavailable. Figure 1 shows the breakdown of clients by age group, to 1st September 2002.
Figure 1: Age by number of clients
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While the Program was established to target people with recently acquired severe traumatic brain injury, it has become clear that it can also benefit some younger people with severe ABI from other causes, such as infection, lack of oxygen (eg. resulting from cardiac arrest, pulmonary embolus, near-drowning, hanging, drug overdose), and some younger people with severe stroke where mainstream services are inappropriate or inadequate. Figure 2 shows the breakdown of clients by cause of ABI, to 1st September 2002.
Figure 2: Causes of ABI
Disease = encephalitis, meningitis
Surgical = outcome as a result of surgery
Medical = brain tumour, anaphylactic reaction
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To be eligible for funding through the Program, an applicant must satisfy all the following criteria:
As the Program continues to develop, it will be possible to test and assess whether there is a capacity to extend some services to people who have the potential to benefit from the Program although they do not meet all the eligibility criteria.
The Program is not appropriate for, and is not resourced to address the needs of, people with dementia or degenerative neurological diseases. Other services are available and appropriate for these people.
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While the effects of brain injury vary according to the part of the brain damaged and the severity of the damage, effects commonly include:
Once the initial stages of acute trauma have passed, people with ABI have a near-normal life expectancy.
Generally, recovery following brain injury is greatest over the early months after the injury, with rate of improvement then declining rapidly.
In people with severe ABI, improvement is very much slower than this and continues for considerably longer. There is a paucity of studies of the long-term outcomes and potential for these clients, and the ABI: STR Program is already contributing significantly to knowledge and evidence-based practice.
While the literature suggests that significant neurological improvement in these clients may continue for 18 months to 2 years, experience on the Program suggests that appropriate rehabilitation services may continue to achieve functional gains for some clients over longer periods of time, over and above the improvement that occurs naturally as the person adapts increasingly to their disabilities. In time, functional improvement plateaus and the person’s daily activities are largely sufficient to maintain their level of function. This is the point at which therapy may be substantially reduced or discontinued, although some people will need a low level of ongoing therapy to prevent deterioration.
In the weeks or months after a severe ABI, the client may remain bedfast or dependent on total care before recovering to a level where active rehabilitation is possible. While some clients have multiple medical problems, many will be medically stable within a few weeks and do not need acute hospital care beyond this time. Often, physical, cognitive and possibly behavioural dysfunction limits the person’s ability to interact with their surroundings or participate in self-care or therapy. Clients at this interim stage need intensive nursing and often passive therapy to prevent deterioration, maintain physical functioning and maximise the potential for later recovery.
With support from the Program, this interim care may be provided in a nursing home. While mainstream facilities such as nursing homes cannot routinely provide the level of care needed, the Program can purchase additional care and ensure that the client’s progress is monitored so that active rehabilitation can be introduced when appropriate. The arrangement allows time for natural recovery to occur and for treatment teams to assess the client’s potential. For those clients for whom there seems to be little or no rehabilitation potential, it also provides relatives with time to adjust to the situation and plan for the future.
As natural recovery progresses, clients become increasingly able to interact with their environment and participate actively in physical and cognitive programs. The progression is similar to that experienced by most clients after brain damage, but the speed of change and the degree of persisting disability are very different. Clients on the Program progress slowly towards limited quality of life and independence. In the long term, some achieve independence in self-care and are able to live in the community with support. If the level and rate of recovery increase, the potential exists within the Program to transfer clients to faster-stream rehabilitation. Others require a substantial amount of attendant or nursing care after their natural recovery has plateaued, and some will need life-time care and support from the ABI: STR Program to complement funding from other State, Commonwealth, local government and non-government programs.
After the initial period of slow-stream rehabilitation, most clients will require therapy in the longer term, to maintain the level of function and independence gained or to maximise further potential for functional improvement. In some, recovery may plateau for an extended period, before recommencing slowly, possibly indicating the need for a further episode of targeted therapy and/or new drugs.
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The ABI: STR Program has developed a unique model for the delivery of targeted and responsive rehabilitation and long-term maintenance services to clients with the most catastrophic ABI and the most complex and difficult care needs.
The Program enables these people to be integrated into mainstream services and, so far as possible, back into the community. It maximises their independence, within the limits of their injury, it minimises their marginalisation, and it achieves this in a manner which is highly cost-effective in the longer term.
Funds to purchase services are allocated to each client and these resources are used to strengthen and enhance the capacity of existing mainstream services to meet the needs of people with ABI rather than developing a separate service infrastructure.
The Program aims to:
The service delivery model developed by the Program to achieve these aims involves:
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The legislative framework for the Program is provided under the Commonwealth Health Act (1953), the Commonwealth Aged Care Act (1997) and the Victorian Disability Services Act (1991).
The State Minister for Health and Minister for Aged Care has committed a total of $5 million recurrently to be allocated over five years. Funds are provided on a prospective annual basis, with end-of-year acquittal requirements.
It was estimated that the funding would cater for a minimum of 20 new clients per year over the five years, to provide continuing services to approximately 100 people with severe ABI.
Efficiencies achieved in resource allocation and purchasing of services, without compromise to the quality of care and outcomes for clients, will enable the Program to cater for a larger number of clients and potentially to minimise demand for future growth in funds to meet the long-term maintenance needs of the growing number of Program clients.
The ABI: STR Committee is concerned with broad policy and Program direction. It oversees the development and ongoing administration of the Program, including the development and implementation of guidelines and policy documents. The Committee meets twice yearly, or more often if a policy issue needs debate and determination. It comprises:
The Committee has been independent of the funding body and is to remain independent of the auspice organisation.
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Up to 26 October 1998, the Program was administered within the Aged, Community and Mental Health Division of the Department. Following a tender process, responsibility for the Program was transferred to Southern Health. The terms of the contract require Southern Health, in addition to administering the Program, to review and update the care plan proforma, produce an annual Best Practice Report, review and refine the ABI: STR Program guidelines, and produce a client information kit for distribution.
Overall responsibility for purchase of services and management of the budget rests with the administrative management of the Program. This was originally the Executive Officer responsible for the Program within the Department and now is the Chief Executive Officer of the auspice organisation responsible for the Program (Southern Health). The Chairman of the ABI: STR Committee in conjunction with Southern Health is responsible for overseeing the administration of the budget and, with the Committee, for allocation of resources within the budget.
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The ABI: STR Program contract purchases case management for clients from a number of case management services, purchasing extra case management as necessary from the service and/or from other case management services, as appropriate for individual clients.
The case manager for each client:
To provide consistency for client and family, ABI: STR clients remain, where possible, with the same case manager over at least the period of slow-stream rehabilitation. They may be transferred to a generic case management service after this if appropriate.
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The ABI: STR Service Panel is responsible for allocating services and funds to individual clients. The Panel:
The Panel comprises of at least:
The Panel may also include other members invited by the Chairman. The Chairman may seek extra advice as needed regarding individual Program applicants.
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The first contact with the ABI: STR Program is usually via a contracted case management service. It may, however, come through any route, including other clinical services or personal contact. Potential clients are referred to an appropriate case management service for the development of a care plan, which is then submitted to the ABI: STR Service Panel (see Figure 3).
The care plan, particularly the goals set by each care professional, is of central importance. It provides the basis for the ABI: STR Service Panel’s decisions regarding services, both initially and on review.
In developing the care plan, the case manager must discuss all STR applications with the relevant Regional Departmental of Human Services office to ensure that the client is accessing all relevant mainstream services and resources.
The care plan will include personal details, personal history, guardian or advocate details, a full medical history, and reports from specialists including a full neuropsychological evaluation and evaluations by physiotherapy, occupational therapy, speech pathology and others as required. It will indicate the potential for rehabilitation, specifying:
The Panel assesses each care plan and may request further information, to determine whether the services and levels of service requested are reasonable and appropriate for the client and sustainable within the resources of the Program.
During the course of an agreed care plan, clinicians and the case manager may, in conjunction with the client and family, change or modify therapies or equipment so long as they remain within the agreed care plan budget. Changes that require additional resources or significantly alter the care plan goals or service costs are referred to the ABI: STR Service Panel for approval.
Guidelines used by the ABI: STR Service Panel to assess care needs will continue to be refined in the light of Program outcomes and research. Currently, the Disability Rating Scale (DRS) is being used in conjunction with clinical judgement to determine access to the ABI: STR inpatient service, and may also be used as a guide to the level of service required (see Figure 3). The aim is to differentiate reliably between:
Figure 3: Overview of the ABI: STR Program structure and assessment process
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The ABI: STR Service Panel regularly reviews each client’s progress and care plan. Reviews are usually every three to six months for clients receiving slow-stream rehabilitation or in the first year post-injury awaiting neurological recovery before active rehabilitation; and once a year for long-term maintenance. This, however, will depend on the circumstances of each particular client. There must always be the flexibility to review a client if:
The review seeks to:
It is possible for people on long-term maintenance to receive episodes of more intensive rehabilitation services, if assessed by the Service Panel as needing such services. This may, for example, be to:
The review process is an integral part of the ongoing development of the Program and of the development of the evidence base for improving practice. The inputs and outcomes for each client will feed into prospective planning for other clients on the Program.
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The ABI: STR Program aims to provide services in the accommodation setting that is most appropriate, clinically and socially, for each client. This entails balancing, on the one hand, the advantages of locally delivered care, where family and friends have easy access but rehabilitation services may be less available or lacking specific expertise, and on the other hand, rehabilitation services delivered at a facility that offers expertise in treatment of ABI but may be geographically distant from family and friends.
The Program is maximising options for service delivery at the regional and local level by resourcing specialist inpatient settings which are able to provide specialist advice and consultancy to health professionals throughout the State, and by providing resources and access to expertise for family, friends and communities caring for people with ABI.
Clients who are non-responsive in the weeks or months following their ABI and need high dependency nursing care, passive therapy and monitoring, but not acute care, are usually assessed as eligible for, and most appropriately cared for in, a nursing home. The Program provides extra support to meet identified needs until the client recovers sufficiently to participate in active rehabilitation or it is possible to make an informed assessment of future needs.
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The Program enables the delivery of slow-stream rehabilitation services to clients:
Rehabilitation services are provided through the Program for as long as the client continues to make functional gains that will change the level of independence or the level of care required in the long term. When the Program was first established, the expectation, based largely on the limited literature available, was that rehabilitation services should be available for 18 months. As stated earlier, however, experience to date suggests that the potential for functional improvement may extend for considerably longer than this. The need for rehabilitation services is reassessed for each individual client and judged by the ABI: STR Service Panel based on information contained in the care plan, to ensure that each client has the greatest possible potential to make functional gains and that resources are being used efficiently.
Core rehabilitation services provided include physiotherapy, speech pathology and occupational therapy, with other therapies and treatments being considered by the ABI: STR Service Panel on a case-by-case basis. Interpreter services are purchased as necessary, usually through the telephone interpreter service, local government, or other mainstream interpreter services.
Specialised and expensive medical needs such as Baclofen delivered by an intrathecal pump or Botulinum Toxin may be approved for a client if not provided by Medicare and not covered under the Pharmaceutical Benefits Scheme. These costs are subject to individual assessment by medical practitioners and are considered by the ABI: STR Service Panel on the medical practitioner’s recommendation.
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The ABI: STR Program funds attendant care services at any stage, where these are necessary to supplement services available through mainstream service providers. In the long term, Program clients are assessed to access mainstream programs for accommodation and attendant care support. Where mainstream programs do not provide a sufficient level of service, the ABI: STR Program provides resources to purchase extra attendant care and/or ongoing maintenance therapy services as required to meet identified needs.
These services may be delivered in:
Some clients on long-term maintenance may require further episodes of more intensive therapy to maintain their level of function, address specific problems or co-morbidities, or take advantage of new treatment options or newly emerging potential for further improvement. This will be assessed by the ABI: STR Service Panel based on information in the care plan.
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To ensure a firm basis for its rehabilitation services and the ready availability of these services, the Program is developing inpatient slow-stream rehabilitation units at major rehabilitation centres, through contract purchasing. This will both foster expertise and excellence in the management of ABI: STR clients and ensure that economies of scale maintain cost-effectiveness.
Units will be developed on a regional basis to ensure that specialist inpatient slow-stream rehabilitation is available to clients relatively close to their home and community. To provide the basis of an adequate service, two ABI: STR inpatient units located in the Melbourne metropolitan area are considered essential. Smaller units linked to one of these units are also required through appropriate sub-acute services in non-metropolitan areas.
Inpatient services are currently being purchased on an individual client basis in non-metropolitan facilities through the same service purchase arrangements. All inpatient services will be purchased on a bed day basis through a sub-contract arrangement established and maintained by the Program administration.
Additional funding in 1997/8 made it possible to develop the first of the slow-stream inpatient rehabilitation units in the metropolitan area, at the Royal Talbot Rehabilitation Centre. It started to deliver services under the ABI: STR Program early in 1998 and by July, four ABI: STR clients were using the service. The purchasing arrangement will enable at least five clients at a time to use the service. Development of the second unit, at Caulfield General Medical Centre, began in 1998.
The Program has set out to purchase services from the metropolitan units in a way that will support their development as centres of excellence, with specialised medical, allied health and nursing skills and a capacity to provide telephone, face-to-face and video consultancy services to professionals and care providers involved with ABI: STR clients. Cost-effective support for local care providers will entail the use of information and communication technology such as video conferencing.
The purchasing arrangements will enable each of the two metropolitan units to provide specialist consultancy services to half the State, each taking responsibility for supporting provincial centres and the regional rehabilitation consultancy and liaison services that match their catchments (see pages 5 and 31). Specialist training in these units will be expected to contribute to the development of the skills of medical, nursing and allied health therapists across the State in the care of this client group.
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Clients assessed as eligible for high dependency residential care may be able to live within the community if appropriate accommodation with care can be provided. While the ABI Westgarth Community Shared Accommodation Facility has been developed to provide such care to a small number of clients, there are very limited options for accessing such services.
Departmental regional offices have established accommodation support waiting lists and ABI: STR Program clients for whom such care is clinically and socially appropriate will be included on these. Until such time as there are adequate services, other accommodation services or solutions will need to be developed for individual clients. The future development of accommodation options is discussed here.
The Westgarth Facility provides long-term community-based accommodation for five people with severe ABI who require twenty-four hour care. As the first such purpose-built, community-based facility developed by the government within Victoria, it will serve as a model for further similar facilities. The design incorporates five self-contained units joined by a common area, and ensures that each resident has the greatest opportunity to learn activities of daily living and independence while providing a high level of individual privacy, support and security.
The Westgarth Facility was developed through co-operation between the Disability Services Division and Aged, Community and Mental Health Division of the Department. It was undertaken at the insistence of the families of young people with severe ABI who had no alternative to inappropriate institutional care (four of the current five residents had previously been accommodated in the now closed North Eastern Metropolitan Psychiatric Services institution).
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The ABI: STR Service Panel approves in principle the purchase of equipment and home modifications if these items are not available through other programs (eg. Program of Aids for Disabled People, Office of Housing, Home Renovations Scheme).
To ensure a consistent and cost-effective approach, the ABI: STR Program has contracted the purchase of all equipment and home modifications through the St Vincent’s Hospital Program of Aids for Disabled People Co-ordinator, who also serves on the ABI: STR Committee as the ABI: STR Equipment Co-ordinator. The ABI: STR Program pays St Vincent’s Hospital 12.5% of the purchase price of each item to cover administration costs.
The ABI: STR Equipment Coordinator is an essential part of the service and is to be funded on an ongoing basis. The coordinator must be a qualified occupational therapist with expertise in aids, equipment and home modifications for disabled people, including the application of these items, the relevant Australian Standards requirements, and a knowledge of suppliers and costs.
The cost of equipment and home modifications, including the administrative costs, is approximately 15% of the total allocated ABI STR budget, or $150,000 of every $1 million dollars spent on services.
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The individualised purchasing arrangements of the ABI: STR Program mean that cultural issues are readily, sympathetically and appropriately accommodated. Experience on the Program confirms the experience of domiciliary rehabilitation teams working in various locations in Victoria, that for many people of non-English speaking background, rehabilitation is most acceptable and effective when it is delivered in the home.
The language needs of people from small minority communities, however, will always be a particular challenge, and interpreter services will need to be provided to ensure needs are met as effectively as possible.
The ABI: STR Program has been notably successful in achieving the aims set out here:
The Program has enhanced the quality of life for individual clients and families, and demonstrated long-term cost-effectiveness. The client stories that comprise the next chapter illustrate that both these outcomes are optimised when the client is referred and intervention begins as early as possible.
Client numbers, placement, and expenditure have been systematically monitored. To date, however, while each client’s case history charts the client’s progress in detail, the Program has not defined an appropriate measure of functional gains that allows ready comparison between clients and clearly demonstrates functional gains in relation to interventions over time for each client. In the future, use of an appropriate measure of functional independence will be included in each client review to provide such information. In the meantime, the client stories in the next chapter provide strong evidence of the significant gains for clients and families.
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The ABI: STR Program has been especially successful in assisting younger clients with recently acquired severe brain injury to move from acute hospital to appropriate rehabilitation and accommodation facilities, and in ensuring that the accommodation environment is appropriate to the client’s age.
Of the 157 clients accepted to the Program up to 1st September 2002, 108 were in an acute hospital at the time they entered the Program, 38 in a nursing home, and 11 at home.
On 1st September 2002:
About half the clients on the Program had moved from slow-stream rehabilitation to long-term care. Two clients had left the Program: one (“Zena”) reached a level at which she was able to be supported by mainstream services; the other had been receiving mainstream services before acceptance by the Program but required top-up funding from the Program for a single episode of specific services.
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The ABI: STR Program had, by 1st September 2002, integrated 30 clients totally into generic or community-based support programs such as:
Before the ABI: STR Program, people with severe ABI may eventually have accessed such services, but it was usually too little and too late to take advantage of the window of recovery. The ABI: STR Program has, through the advocacy and di