The NBIF was established some 20 years ago, by a small group of people in Canberra, after they became involved in helping the families of two patients with severe acquired brain injury. After their injured family members had received acute care in hospitals, the families were told that there was little more that the healthcare system could do for them. Not wishing to abandon their family member to permanent consignment to a nursing home, the families had taken the patients home, and sought to provide them with the best possible opportunity for cognitive and physical rehabilitation. To attempt this, the families were guided by the philosophy of Dr Ted Freeman, and assisted in applying his ideas by those friends who were subsequently to constitute the NBIF.
Dr Freeman’s approach to rehabilitation, was originally spelt out, in his monograph The Catastrophe of Coma.
In the years since its formation, the NBIF has assisted many people with acquired brain injury (ABI), and their families, in many parts of Australia. The Foundation has several hundred members, many of whom have had personal experience of brain injury in their family. Apart from the distinctively ‘medical’ aspects of rehabilitation, people living with the aftermath of an acquired brain injury, of any level of severity, are likely to experience significant disadvantage in many other aspects of day-to-day life. Problems with accommodation, education, employment, relationships, substance misuse, finance etc., while not ‘clinical’, can nevertheless prove to be major impediments to a person achieving maximum potential for recovery and social reintegration. NBIF seeks to assist in all of these areas, according to the needs of any specific individual.
Apart from the actual provision of services to, and advocacy on behalf of, individual people, the Foundation attempts to influence government policies, in such a way, as to benefit larger groups with similar problems.
Given the reality, that the most effective instrument to improve the life of a person recovering from a brain injury, will be his or her family, much of the Foundation’s efforts are directed to providing support for the families, or carers, of those with ABI.
The NBIF receives recurrent funding from the ACT Government, to provide an accommodation service to four people, and to provide an information and advocacy service. Apart from this money, allocated on trust to secure services such as accommodation, assistance with personal care, transport etc., the Foundation is not supported by recurrent government grants. ‘Core’ funding for the NBIF, has always been sourced from within the community that it serves (with the exception of the use of the wheelchair accessible van and the hydrotherapy pool at the Dorothy Sales Cottages, all services are free). Funding comes from activities organised by volunteers, and from direct donations.
Management
The NBIF is managed by an Honorary Board, members of which provide a variety of skills. Some members have experience of caring for a relative following acquired brain injury (ABI). The Board is assisted by sub-committees with experience in medical, legal, ethical, and research issues.
Aims and Activities - ACT and Nationally
- Provision of support, advocacy and appropriate programs, in order that those who have suffered severe brain injury have the opportunity to reach their maximum potential;
- Support of relatives volunteers, and workers involved in rehabilitation;
- Promotion of community awareness of the problems and needs of the patients, their relatives and carers in the ACT and nationally;
- Provision of education programs to encourage awareness;
- Promotion of a close working relationship with health professionals and interested bodies;
- Advocacy for the establishment of: an ACT brain injury unit; coma care units; appropriate facilities and accommodation at every stage of recovery; supported domiciliary care programs;
- Promotion and research into assessment, early intervention, and care of those who have suffered severe brain injury.
Provision of Services
Within the limited resources available to it, the Foundation offers support in the form of:
- financial assistance
- help with equipment
- assistance with transport
- providing advocacy
It also provides:
- community-based rehabilitation programs
- weekly exercise programs
- hydrotherapy and massage
- monthly social gatherings
Another important service the NBIF is able to provide, is the presentation of pre-driver education programs in ACT schools. It has also been involved for a number of years, in the Diversionary Conferencing Program, for people with drink-driving offences.
Tanderra Supported Accommodation
In May 1993, with the aid of Commonwealth funding, through the ACT Housing Trust, the NBIF established Tanderra House. Tanderra provides an accommodation service for those at the later stages of recovery from ABI, who, while relatively independent, need some live-in support.
In 1998, the NBIF received a grant from the NRMA-ACT Road Safety Trust, to fund the building of 2 cottages which opened in November in the same year. The cottages are home to eight residents with ABI, and there is one respite care bed. These cottages are staffed by health professionals, and are managed by Centacare. The recurrent costs of staffing are funded by Disability ACT.
Reintegration into the community is seen as an essential aim.
Support Groups
The Foundation operates two Support Groups on a monthly basis: one is for survivors of ABI, and the other is for carers. Both Groups, welcome members to share their experiences, and offer mutual support.
Some Causes of ABI
- Road accidents motor vehicle, pedestrian;
- Sporting accidents;
- Assault;
- Falls;
- Stroke;
- Tumour;
- Infection;
- Poisoning;
- Hypoxia;
- Alcohol/drug abuse;
- Accidents in the home, at work, at school.
Some difficulties which people who have suffered ABI may face:
Physical:
They may find that they:
- Tire easily, especially as the day passes. This may affect concentration, and accentuate problems;
- Experience problems with coordination, walking and balance;
- Experience problems with feeling, sensation, sight, hearing, communication (including speech which may make it difficult for others to follow);
- Have loss of bowel and bladder control;
- Have seizures and other continuing medical problems.
Cognitive
They may find they have:
- Problems handling money (can result in their being over careful, or spending excessively);
- Problems with attention and memory;
- Difficulties in starting tasks, or following through;
- Difficulties in solving problems;
- Slower thought processes;
- Difficulties in expressing feelings;
- Problems in understanding the situation or the position of others;
- Inability to manage time;
- A lack of insight.
Psychological and Social
Those who suffer ABI will generally have problems with short-term memory. They may also experience loss and grief, and emotional deprivation. This can be due to loss of:
Friends; Family; Job; Financial Security; Independence; Lifestyle; Driving Ability; Possessions; Familiar Environment; Social Interaction; Former Appearance; Sexual Activity.
These and other factors may cause:
- Fear of the future;
- Frustration;
- Depression and Withdrawal;
- Anger and Aggression, which in turn, may result in difficulties with relationships.
Introduction to the Book:
Catastrophe of Coma - A Way Back
Acquired brain injury (ABI) is caused by trauma on the roads; falls or assaults; brain infections, such as meningitis and encephalitis, hypoxia; and bleeding into the brain, from strokes or sub-arachnoid haemorrhage. ABI has become much more common in the past 30 years, and has resulted in many people living for prolonged periods, with major disabilities.
Coma often follows severe brain injury. Coma indicates that major damage to the brain has occurred.
It was to assist this group of people and their families, that the approach developed by Ted Freeman, and described in this book, was developed.
The orthodox medical view, has been that little can be done to accelerate the patient's arousal from coma. Very often, little is done with these patients, and the longer the period of coma, the worse the eventual outcome.
The Freeman approach, of encouraging early intervention, following brain injury, is based on the fact that any innate potential of the brain to recover from injury, is likely to diminish with the passage of time. Recent research, has shown that the adult brain, retains nerve cells, which are still capable of division, to produce new cells. Molecules which can stimulate cell division, are released into brain tissue, in response to injury, but their concentration, lessens with the passage of time.
Using the Freeman approach, an attempt is made to communicate with the patient, as early as possible, within the general medical management. It is not based on "high tech" and includes no highly complicated procedures.
The importance of the family as the providers of care, and their central position as the primary therapist, is detailed. Step by step, the family is shown how to deal with this catastrophe; how to move from the emotion of despair, to practical reality; and the importance of hope.
They are shown how to make their own accurate diagnosis of the patient; how to provide the necessary therapy; how to cooperate with the health care professions, in attempting to restore the patient to the conscious state; and how to continue rehabilitation.
Although rarely recorded in this book, the outcomes from the application of the procedures which Dr Freeman advocates, have often been remarkable. Dr Freeman has generously made the contents of his book available to all those who might benefit from it. Any or all of it, may be easily accessed by clicking here However, those who would prefer to have the whole book more readily at their disposal, can obtain a copy of it, in CD ROM form (in either Adobe PDF or Microsoft Word format) by writing to the Foundation, requesting a copy, and enclosing $10 to cover the cost of the disc and postage.
Peter McCullagh
President, National Brain Injury Foundation
Funding
The NBIF receives funding from the ACT Government to operate the Tanderra Supported Accommodation Service and Outreach Programs.
A dedicated team of twenty volunteers operates the NBIF Charity Shop in Civic, which has for many years, underpinned NBIF’s financial support. All other funds are raised in the local and wider community. These funds are provided by the generous support of individuals and groups aware of the work of the NBIF and the acute needs of those it represents.
The NBIF's stall, initially located in the Bunda Street car park, and now situated adjacent to the Canberra Centre, has been a major contributor to the Foundation's discretionary funds, over many years. Staffed by a loyal band of volunteers, it was initially the only source of the NBIF's funds, and it remains a key element in its fundraising activities.
Over the years, the Foundation has conducted several discrete major fundraising events, organised by enterprising individuals, to whom the Organisation remains deeply in debt. These events have included 'Button Days', involving students and other volunteers selling items such as 'fridge magnets, brooches, badges, lollipops etc., and 'sausage sizzles' at rock concerts. An ongoing activity, is the collection of donations from the distinctive NBIF money boxes, displayed by a number of participating stores in the Canberra Centre and elsewhere.
The Organisation is also assisted by generous donations from Community Groups and individual donors.
Donations:
NBIF is a recognised benevolent institution. Donations of $2 or more are tax deductible.
Contact Details:
Physical Address
16 Birdwood Street
Hughes ACT 2605
Postal Address
PO Box 5542
Hughes ACT 2605
Email
Fax
(02) 6285 2649
Telephone
(02) 6282 2880 (Monday to Friday, 9:00 am to 5:00 pm)
An answering machine may operate.
People to Contact
Ken Rook or Jeanette Budak.
The National Brain Injury Foundation,
is an Australian
Community-Based Organisation,
that was incorporated in 1989.
