Brain Injury Professional, vol. 6, issue 3

B R AIN INJURY professional vol. 6 issue 3

The official publication of the North American Brain Injury Society

BRAIN INJURY REHABILITATION: International Perspectives Br a i n I n j u r y R e h a b i l i t a t i o n i n the United Kin g d o m The Services to Individuals with Brain Injury Throughout the Continuum: Th e I t a l i a n Pe rs p e c t i ve Activities of the Pediatric Rehabilitation Department Children’s Hospital: Ba m b i n o G e s u Su n n a a s H o s p i t a l Tr u s t Me d i c a l R e h a b i l i t a t i o n A f t e r Acquired Br a i n I n j u r y i n S w e d e n Inn o va t i ve P r a c t i c i e s a t t h e National Re h a b i l i t a ti o n H o s p i t a l Ac q u i r e d B r a i n I n j u r y i n I r e land A S i m p l y S e l f - S u s t a i n i n g S ystem Southern Africa

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contents

BRAIN INJURY professional vol. 6 issue 3, 2009

The official publication of the North American Brain Injury Society

NORTH AMERICAN BRAIN INJURY SOCIETY

departments 4 President’s Message 6 Guest Editor’s Message

CHAIRMAN Robert D. Voogt, PhD TREASURER Bruce H. Stern, Esq. FAMILY LIAISON Skye MacQueen PRESIDENT Ronald C. Savage, EdD EXECUTIVE DIRECTOR/ADMINISTRATION Margaret J. Roberts EXECUTIVE DIRECTOR/OPERATIONS J. Charles Haynes, JD MARKETING MANAGER Joyce Parker GRAPHIC DESIGNER Nikolai Alexeev ADMINISTRATIVE ASSISTANT Benjamin Morgan ADMINISTRATIVE ASSISTANT Bonnie Haynes

30 BIP Expert Interview BRAIN INJURY PROFESSIONAL 32 Non-profit News 34 Legislative Round-up

PUBLISHER J. Charles Haynes, JD EDITOR IN CHIEF Ronald C. Savage, EdD EDITOR, LEGISLATIVE ISSUES Susan L. Vaughn FOUNDING EDITOR Donald G. Stein, PhD DESIGN AND LAYOUT Nikolai Alexeev ADVERTISING SALES Joyce Parker

EDITORIAL ADVISORY BOARD

features 8 Brain Injury Rehabilitation in the United Kingdom

BY MIKE MCPEAKE, RMN 10 The Services to Individuals with Brain Injury Throughout the

Continuum: The Italian Perspective

BY PAOLO BOLDRINI, MD

` 12 Activities of the Pediatric Rehabilitation Department Children’s Hospital: Bambino Gesu

BY ENRICO CASTEL 14 Sunnaas Hospital Trust

BY SVEINUNG TORNAS 16 Medical Rehabilitation After Acquired Brain Injury in Sweden

BY ANIKO BARTFAI, PhD 20 Innovative Practices at the National Rehabilitation Hospitall

BY JACINTA MCELLIGOTT AND VALERIE TWOMEY 22 Acquired Brain Injury in Ireland

BY BARBARA O’CONNELL, MBA, DIP, COT 26 A Simply Self-Sustaining System Southern Africa

BY ALISON MADDEN, PhD

Michael Collins, PhD Walter Harrell, PhD Chas Haynes, JD Cindy Ivanhoe, MD Ronald Savage, EdD Elisabeth Sherwin, PhD Donald Stein, PhD Sherrod Taylor, Esq. Tina Trudel, PhD Robert Voogt, PhD Mariusz Ziejewski, PhD

EDITORIAL INQUIRIES Managing Editor Brain Injury Professional PO Box 131401 Houston, TX 77219-1401 Tel 713.526.6900 Fax 713.526.7787 Website: www.nabis.org Email: contact@nabis.org

ADVERTISING INQUIRIES Joyce Parker Brain Injury Professional HDI Publishers PO Box 131401 Houston, TX 77219-1401 Tel 713.526.6900 Fax 713.526.7787

NATIONAL OFFICE

North American Brain Injury Society PO Box 1804 Alexandria, VA 22313 Tel 703.960.6500 Fax 703.960.6603 Website: www.nabis.org Brain Injury Professional is a quarterly publication published jointly by the North American Brain Injury Society and HDI Publishers. © 2009 NABIS/HDI Publishers. All rights reserved. No part of this publication may be reproduced in whole or in part in any way without the written permission from the publisher. For reprint requests, please contact, Managing Editor, Brain Injury Professional, PO Box 131401, Houston, TX 77219-1400, Tel 713.526.6900, Fax 713.526.7787, e-mail mail@hdipub.com

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president’s message

Ronald Savage, EdD

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BRAIN INJURY PROFESSIONAL

This issue of Brain Injury Professional focuses upon brain injury rehabilitation from a global perspective. As we take a look outside of North America, many brain injury professionals find that other countries have similar challenges trying to meet the needs of this complex population with limited resources. In fact, according to the World Health Organization, in many under developed countries, few services even exist to support individuals with brain injuries and their families. Lack of even simple emergency and/ or acute medical care is non-existent and rehabilitation services within hospital or in the community are not even possible.

Countries in the United Kingdom, Europe and Scandinavia, however, like North America, have developed specialized brain injury programs unique to their country and culture. Many of these countries and their brain injury professionals pioneered rehabilitation methodology that the rest of us use daily in our programs. Such “best practice” programs have contributed to the brain injury literature and have identified standards of practice. The Commission on Accreditation of Rehabilitation Facilities (CARF) has been an integral part of this standards process. Chris MacDonell, the Managing Director of Medical Rehabilitation, has been a driving force at CARF for almost two decades and has partnered with numerous brain injury programs through out North America, Europe, Scandinavia and the United Kingdom. The work of CARF has not only helped programs develop best practices, but it has also allowed tremendous sharing of knowledge among professionals. Ms. MacDonell notes that “Those individuals who have gone overseas to survey come back with an enthusiasm and a desire, like so many of us, with a passion for quality care, to ‘make the world smaller’.”

Thus, brain injury professionals from around the world have found that shared knowledge, common standards for best practices, and “real life” rehabilitation

models benefit individuals with brain injuries and their families. As Dr. Christine Croisiaux, chair of the board of European Brain Injury Society (EBIS) states “[our conferences] often have a very practical emphases; for example, identifying best practice solutions in late communitybased rehabilitation and management.”

As part of all our efforts to “go global”, Dr. Jane Gillett, MD, from Ontario, Canada hosted a meeting in July in Toronto to organize the International Paediatric Brain Injury Society (IPBIS). Over 80 brain injury professionals attended this inaugural meeting from over 20 different countries. With this effort and the development of an interactive web site, professionals are now exchanging information, forming study groups, and posting clinical questions. The protype web site (www. eval-headspace.jivesbs.com) has already been activated with queries from all over the world before it has even been officially announced. IPBIS is now in the process of complying with the various legal formalities required to form a new Society and we look forward to making a formal announcement about this much needed organization in the near future. As we all know, there is still so much work to accomplish and so much information to share with each other.

NABIS wants to thank Chris MacDonell and CARF for their never-ending efforts to enhance brain injury rehabilitation. We are also especially thankful to our authors for sharing information about their brain injury programs. Chris and our authors have all made the brain injury world a lot smaller. NABIS is very grateful for their hard work and commitment.

Ronald Savage, EdD Editor’s Note: due to the international nature of this special issue of BIP, the European spelling used in the submitted articles has not been modified.

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guest editor’s message International Brain Injury Rehabilitation

Chris MacDonell

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BRAIN INJURY PROFESSIONAL

I have had for the last 18 years, the privilege of working at the Commission on Accreditation of Rehabilitation Facilities (CARF). Now for many of you, CARF may be an adjective, an adverb, a verb, a noun and even at times a swear word but for me it has been the opportunity to work with a vast array of dedicated rehabilitation professionals around the world.

Your dedication to enhancing the lives of those individuals receiving specialized brain injury services in your programs is both exhilarating to see and learn about, as well as frustrating since we all know so many with acquired brain injury do not receive what they need throughout the full continuum of services. CARF in 1993 accredited 349 Brain Injury programs (145 were inpatient rehab, 207 were community-based) in the United States. CARF in May 2009 accredited 798 Brain Injury programs (103 inpatient rehab and 695 community-based) in the United States, Canada, England, Ireland, Sweden, Norway, Denmark, and Northern Ireland). We still lack in many areas of our countries dedicated specialty programming for those with ABI. When Dr. Ronald Savage contacted me about my interest in doing a Brain Injury Professional with an emphasis on “outside of North America” I was very pleased. Many of the members of NABIS are also CARF accredited organizations and also CARF surveyors. Those individuals who have gone overseas to survey come back with an enthusiasm and a desire, like so many of us with a passion for quality care, to “make the world smaller”.

I have seen first hand that the same issues that we face here are faced in other countries. The voice of the person with ABI and their families continues to be drowned out in some cases or left on

their own to figure out how and where to receive much needed services. This is not an American issue but an international issue that we all face daily.

I hope that by bringing information about providers in Sweden, Norway, Italy, and Ireland in this publication, as well as information about the European Brain Injury Society, your interest will be tweaked to see how we reach across our borders and collaborate together as brain injury professionals to improve internationally what we can offer to those with ABI and their families. We hope this will be a stepping off point where we learn how others make things work with limited funds, how support for families grow, and what we can do to be the advocates and voice of those that continue to have difficulty being heard.

We are very pleased as well to be able to facilitate bringing to the NABIS conference in October three individuals from Europe (Ireland, France, and England) to discuss Brain Injury programming, services, and trends in their unique settings and countries.

It has become evident to me over the last 18 years working at CARF that what Helen Keller said is embedded into the heart and soul of brain injury providers around the world.

I am only one, but I am still one. I cannot do everything, but still I can do something. And because I cannot do everything I will not refuse to do the something that I can do.”

—Helen Keller Thank you to the NABIS Board and Dr. Ronald Savage for inviting CARF to bring to you some of your international peers in the field of brain injury rehabilitation.

Chris MacDonell

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SPOTLIGHT ON THE UNITED KINGDOM

BRAIN INJURY REHABILITATION IN THE UNITED KINGDOM The Brain Injury Rehabilitation Trust

BY MIKE MCPEAKE, RMN

The Brain Injury Rehabilitation Trust (BIRT) is a leading European provider in specialist brain injury rehabilitation. The Trust is a division of The Disabilities Trust which in turn is a leading UK charity working with people who experience a wide range of disabilities including Autism, Learning Difficulties and Physical Disability.

Introduction Much of the post acute brain injury rehabilitation in the United Kingdom takes place outside of the National Health Service. As is generally well known the UK has a free at the point of delivery health care service. Whilst this provides an excellent service in both trauma and acute care, the system is less robust when it comes to providing specialist rehabilitation services that many people require following an acquired brain injury.

The reasons for this disparity are varied, but with few exceptions most of the regional National Health Service providers do not provide ongoing rehabilitation directly, but instead prefer to contract these services out to organisations such as BIRT. A typical care pathway in UK would see a person with an acquired brain injury being treated in an acute hospital in their own town or for the most serious cases a regional specialist centre. Depending on the severity of their trauma, people would then be discharged home, perhaps transferred to a non specialist care setting such as an orthopaedic ward or if lucky, to a rehabilitation medicine service which again might be a regional facility.

Where the system falls down, and where BIRT steps in, is when the level of need is complex, or the person’s behaviour is too challenging. BIRT is unique amongst providers in the UK in that it has a full continuum of care from a partnership with the NHS in an acute hospital, via independent hospitals for people who present with the most severely challenging behaviour through to conventional residential rehabilitation programmes and finally “care at home” schemes which may involve a care worker calling in to a client’s home to check on progress on a weekly basis, or may see a small group of people living together in rented property supported by a small team of staff.

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BRAIN INJURY PROFESSIONAL

Partnerships One of the differentiating features between BIRT and some of its competitors’ is the partnership feature mentioned above. This is unusual in the UK in that the State and Independent sectors do not normally work together in such a collaborative way. It may be thought that such joint working carries with it a number of benefits to all parties and in practice this has proved to be the case. Foremost amongst the benefits is that an NHS provider can bring in an expert partner such as BIRT to provide a model of service which, in isolation, they could not resource themselves.

The advantage to BIRT is that it is possible to access land and buildings which are often under utilised within the NHS without necessarily having to inject large amounts of capital.

Partnerships are particularly attractive to NHS Foundation Trusts which are in effect those who by virtue of sound financial performance been granted a degree of independence from the control of national government and regional management.

Other effective partnerships have seen the provision of an independent hospital in partnership with a charity providing mental health care and treatment, and other options are currently being explored with a charity providing vocational training in the North of England.

Such working is not limited to the United Kingdom in that there are also three separate projects under development with Australian service providers which, it is hoped, will lead to our first international collaboration.

BIRT has always enjoyed strong clinical and professional links with Australia, and the common language and similar cultures make such projects easier to develop. One area already under development has seen staff from BIRT working in Sydney to help start up a new community based brain injury rehabilitation scheme based in part on the successful model of community care based in the UK. Other areas where BIRT is trying to take a lead include working with the criminal justice system at a national level both to promote a better understanding of brain injury within the prison population and also to consider alternative placements for repeat offenders who are clearly not being rehabilitated by the prison system.

One of the strongest partnerships to date has been with the UK Ministry of Defence in the provision of specialist rehabilitation to support servicemen and women injured whilst on active service and for whom survival often leaves them with catastrophic injuries. This is an area of international interest and developments in the USA around mild to moderate head injury following blast trauma are watched with interest.

As an example of partnership working at an altogether different level BIRT runs an annual campaign to promote brain injury awareness amongst children and young people which has now reached many thousands of youngsters. Some of the most powerful testimony in this campaign has been from young people affected by brain injury who are willing to share their story in an attempt to spare others from the trauma.

Staying ahead Although State funding is usually available to support people in their rehabilitation programmes as already noted, much of this care takes place outside the NHS. The effect of this is that the additional funding has to be sought and approved from a variety of bodies before a treatment programme can be implemented. This has an effect which brings the UK experience much closer to that found in the USA and other countries where effectively there has to be finance in place to support the treatment. In a practical sense BIRT has adapted to this model through rigorous pre-admission and screening followed up by very detailed review reports which effectively demonstrate to those funding care that they are achieving value for money.

This has been helped by a study conducted by Worthington et al., in the UK which demonstrated that significant life time savings could be made given appropriate early rehabilitation.

Conversely, in a cash strapped economy such as to be found not only in the UK but currently around the globe, it is the expensive model which becomes hardest to justify when trying to ration care and balance the books. The UK has seen a number of providers spring up in competition to BIRT some of whom strive to provide the same high standards but others, more worryingly, who are generic care providers who claim to be able to offer brain injury specific rehabilitation but who, in practice, lack the clinical expertise to do so.

Having a robust clinical team backed up by strong clinical governance policies and ethical standards are another hallmark of BIRT services. As an organisation with an international reputation BIRT has developed an international staff profile which again helps to maintain the differential between itself and competitor organisations.

Setting the Standards The UK has one of the most heavily regulated Health and Social Care services to be found anywhere in the world. Most of the regulatory function is now vested in just one body, The Care Quality Commission, which is responsible for all Health and Social Care provision across the State and Independent Sectors.

Although supposedly a level playing field experience has shown that different standards have been applied not just between sectors but even between similar services provided by BIRT in different geographical regions. Such inconsistencies are not helpful and go some way to explaining why BIRT was one of the early UK organisations to seek CARF accreditation.

CARF has been one of the most significant events in BIRT’s history and has seen a marked change in the way in which services are offered, particularly with regard to service user involvement which has to date not been a forte of UK services.

Another area, which ties back into the value for money debate, is that the organisation is now much more focussed in terms of outcome measurement and can offer clear evidence as to the efficacy of its treatment programmes.

By undertaking the CARF survey programme, BIRT can demonstrate to those who regulate and inspect its services that quality is a major theme and one for which, quite rightly, BIRT has developed a strong reputation.

In developing a model accredited by CARF, BIRT was able to introduce a degree of consistency across all of its services in the UK based on established best practice rather than regional variation. When setting up new services, which are currently coming on stream at the rate of one major project every eighteen months, it is now possible to provide a consistent model of training and induction to staff at all levels based on the knowledge, skills and experience of their peers’ elsewhere in the country.

This is currently the case in Glasgow, Scotland, which although part of the UK has a different legislative and political framework but to which the BIRT model is being successfully applied.

Future Developments Developments in the coming year will see a major scheme in Wales, opening which, along with the Glasgow project and others, has deliberately been placed within an area which has suffered significantly form economic under-investment with high levels of social deprivation and unemployment. In this way BIRT has promoted social regeneration on a much wider scale than might have been possible whilst itself benefitting from lower land prices and easier staff recruitment amongst a local population with a consequently higher scale of ownership and personal responsibility amongst the staff team.

Conclusion BIRT has been around for little more than fifteen years. In that time its reputation has grown to the point where it can truly claim to be an international player in the field of brain injury rehabilitation.

By sticking with an established neuro-behavioural model which has been refined by experience, it has been possible to meet the needs of people across all points of the rehabilitation spectrum from immediately post injury to many years later when people have returned home.

Whatever the future holds in uncertain times BIRT can be sure that it will remain at the forefront of specialist provision both in the UK and further afield.

For more information visit our website www.birt.co.uk.

ABOUT THE AUTHOR

Mike McPeake, RMN, is a registered nurse who for 26 years worked within the UK’s National Health service in the field of mental health. In 2001 he started work for the Disabilities Trust initially as the Manager of a hospital for people with acquired brain injury and challenging behaviour. Currently he is employed by the Disabilities Trust as their Development and Infrastructure Manager with a particular interest in the design, construction and commissioning of new facilities and also partnership working.

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SPOTLIGHT ON ITALY

THE SERVICES TO INDIVIDUALS WITH BRAIN INJURY THROUGHOUT THE CONTINUUM:

The Italian Perspective

BY PAOLO BOLDRINI, MD

THEORETICAL MODELS IN REHABILITATION OF PERSONS 1998. Most of these units (there are around 60 in the country) are located in northern Italy. Patients admitted to these units should WITH ACQUIRED BRAIN INJURY IN ITALY Significant changes occurred in Italy in the last decades in the domain of rehabilitation interventions and services specifically addressed to persons with severe acquired brain injury (ABI).

In the ‘70s and ‘80s, the models of intervention were generally based on an impairment-oriented medical approach (e.g., stimulation programs for coma). The organization of care relied mainly on specialized rehabilitation wards or hospitals. In the following decade, the interventions tended to be increasingly focused upon social reinsertion, emphasizing the role played by the community- and home-based rehabilitation services. More recently, the planning and organization of care delivery, at least in some parts of the country, increasingly addressed the coordination and the connections between hospital and communitybased services. At present, particular attention is paid to models based on the development of an integrated network of services, allowing a coherent governance of the system of care as a whole.

THE CONTINUUM OF CARE IN ITALY; STRENGTHS AND WEAKNESSES Acute phase - The availability of services in this phase (ambulance, ICU, neurosurgical wards) is generally satisfying throughout the country. For many years, most of the regions have implemented coordinated networks of services; they usually operate according to international guidelines, allowing the centralization of patients to specialized hospitals or trauma centers.

Criteria of good practice for rehabilitation interventions for persons with traumatic brain injury (TBI) during the acute phase and for appropriate referral to the post-acute rehabilitation facilities were established in a National Consensus Conference (CC) held in 2000.1 Following the CC recommendations, many regions (mainly in northern Italy) established coordinated systems of care, including acute care units and post-acute rehabilitation units. Significant improvements have been achieved in providing timely and appropriate transfer of patients, but difficulties and delays are still reported in a percentage of cases because of the lack or inadequate distribution of specialized rehabilitation facilities.

Post-acute phase - Specialized brain injury rehabilitation units were formally introduced in the national healthcare system in 10 BRAIN INJURY PROFESSIONAL

satisfy specific clinical criteria, and no age limits or time limits in length of stay (LOS) have been established (the average LOS in these units is around 100 days). Biases in admission to these units have been observed (younger patients with TBI). Patients may also be admitted to general rehabilitation facilities or (mainly older persons) long-term care facilities. Usually, the patients are treated according to an individual rehabilitation plan through a comprehensive, multidisciplinary team approach. Most of the patients are discharged to home; in Italy, the family is the main resource providing assistance in the postdischarge phase for persons with severe, long-lasting disability after BI. Long-term care and rehabilitation - The services provided after discharge from rehabilitation units (home and community services, rehabilitation facilities, sheltered accommodations) are often considered inadequate in meeting the specific needs of persons with BI. A second National Consensus Conference was held in 2005 addressing these issues. In the last few years, at a national level, a significant increase of the programs and services aimed at supporting the home and community reinsertion was reported; some regions established public-funded financial support programs for persons with sABI and their family members or caregivers.

OTHER PARTICULAR ISSUES Epidemiology - Reliable and consistent data on the prevalence of BI-related disabilities are still lacking; several local, regional, and national studies have been promoted to provide information on these aspects.

Families’ and patients’ associations - A significant increase in the number and size of these associations has been observed in the last 10 years. Their role in promoting the development of better services and policies is acknowledged.

Norms - The norms, laws, and regulations on the assistance and promotion of health, social reinsertion, and return to work of persons with ABI in Italy are generally perceived as adequate, covering the crucial issues in these fields, and in some cases, they appear innovative when compared to other European countries.

Despite that, some critical aspects have been reported concerning their interpretation, practical application, and use in the different areas of the country, affecting their true impact on equity, acces-

Phases in the Care Pathway and Services for the Person with sABI

ACUTE

PHASE

FOCUS OF INTERVENTIONS

TIME FRAME

Body Structures and Body Functions

Hours-Days-Weeks

TABLE 1

STRUCTURES Intensive Care Units Neurosurgical Wards Trauma Centers

Limitations of Participation

Weeks-Months

Limitations of Functioning

Rehabilitation Units Rehabilitation Hospitals Outpatient Rehabilitation Services Months-Years

SOCIAL REINSERTION

POST-ACUTE

Inpatient Alterations of Body Structures and Body Functions (Impairments)

Home- and Community-based Rehabilitation Services Vocational Services

MAIN GOALS OF REHABILITATION INTERVENTIONS Survival Clinical Stability Prevention of Secondary Damages Family Information and Support Clinical Stability Management of Physical, Cognitive, and Behavioral Impairments Improvement of Autonomy Family Information and Support Home Reinsertion Return to Work/School Support to Family Members/Caregivers

sibility, and appropriate timing of services.

Funding of rehabilitation services - Intensive care and inpatient-outpatient post-acute rehabilitation are provided by the National Health Service. Home- and community-based services for persons with TBI in Italy are also essentially funded by public programs. Funds are given by the Ministry of Welfare and the National Health Service to the regions (each region has a regional board of health and a regional board for social services). The regional boards in turn give funds to the local health and social districts. The regions can also make agreements with private providers (usually nonprofit organizations) and give reimbursement for certain services. In some regions, the regional board, through the local districts, provides reimbursement directly to the injured persons (voucher) for some services (e.g., home-based physiotherapy or nursing).

A national public insurance company can provide funds for community services only for certain categories of work-related injuries. Private insurance companies play a minimal role in home and community services, Despite these resources, a huge amount of money is reported to be spent by the families of the injured persons for services not covered by the public umbrella.

REFERENCES

1. Taricco M., De Tanti A., Boldrini P., et al. National Consensus Conference. The rehabilitation management of traumatic brain injury patients during the acute phase: criteria for referral and transfer from intensive care units to rehabilitation facilities. Europa Medicophysica 2006; 42: 73-84.

ABOUT THE AUTHOR

Paolo Boldrini, MD, is a physiatrist who has worked in the area of rehabilitation of neurologically impaired and brain injured persons since 1988.

He has been the Director of the Brain Injury Unit of the Department of Rehabilitation Medicine of Ferrara, Italy, from 2001 to 2006. He is currently the Director of the Department of Rehabilitation Medicine of Treviso, Italy. He was a member of the board of the Italian Society of PM&R from 2003 to 2008. He is currently a member of the Board of the European Brain Injury Society, and the Director of the Italian Journal of Rehabilitation Medicine. He is involved in Italian and European working groups aimed at elaborating and disseminating good-practice guidelines in the rehabilitation of brain injured persons.

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SPOTLIGHT ON ITALY

ACTIVITIES OF THE PEDIATRIC REHABILITATION DEPARTMENT CHILDREN’S HOSPITAL BAMBINO GESÙ

BY ENRICO CASTELLI The Paediatric Rehabilitation Department (PRD) is part of the Children’s Hospital Bambino Gesù, Rome (Italy), accredited by the Joint Commission International (JCI), a division of Joint Commission on Accreditation of Healthcare Organizations (JCAHO). The paediatric hospital has about 800 beds and it is the most important children’s hospital in Italy. The position of a rehabilitation department in a paediatric hospital, having all medical and surgical specializations, is strategic. In fact, our rehab team takes care of patients affected by neurological diseases first with early rehabilitation during the patient’s stay in Intensive Care Unit (ICU), secondly with intensive rehabilitation in acute phase in the PRD and finally, at discharge, plans the reentry into family and school and the access to treatments in their local area. This clinical pathway guarantees the best medical and rehabilitative continuity to our patients.

Our PRD is composed of two wards, with a total of 41 beds, and welcomes newborns, children and adolescents with physical disabilities and/or mental impairment due to brain injury, spinal cord lesions and neuromuscular diseases. One ward is devoted to patients affected by secondary brain damage, coming directly from ICU or Neurosurgical Services, where a first clinical rehabilitative assessment is defined and an acute rehabilitative intervention begins. During this phase, the strict collaboration with all the different specialists, required by patient’s clinical complexity, is fundamental. Once completed this phase, our patients move to the other PRD’s ward, to continue intensive rehabilitation, always guaranteeing a bed for new patients coming from our ICU or other hospitals.

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The clinical activity data of our PRD is: 400 in-patients admitted/year, 13000 in-patient days/year, 8000 Day Hospital/ years, 12000 out-patient visits/year, more than 60 % of the patients are under 6 years of age. Only 30 % of patients comes from local hospitals, 60 % arrives from other parts of Italy (especially from the South) and the remaining 10 % is from abroad.

The PRD is the national point of reference both for the congenital and the acquired severe disabilities of the developmental age, with particular interest in severe impairments due to head trauma and other acquired neurological pathologies like stroke, anoxic-ischemic damages, encephalitis, brain tumours, etc. The PRD is, moreover, a qualified centre for Cerebral Palsy and congenital or acquired Spinal Cord Injury treatment. Other specific intervention areas are evaluation and treatment of neurovisual problems, dysphagia and respiratory rehabilitation. Among the pharmacological interventions, we emphasize the treatment of muscular spasticity by the administration of oral myorelaxant drugs, botulinum toxin injections and the use of intrathecal pumps. Compared to adults, clinical issues related to neurological diseases are amplified in children as brain lesions impair their development. The clinical pictures can include neurological, orthopaedic, physiatric, ophthalmologic, neuropsychological, psychological and ENT-related impairments. Therefore, the residual multiple deficits are sometimes so severe as to prevent an adequate functional recovery and satisfactory re-entry to school, the family and social contexts.

The rehabilitation is based on the principles of evidence based medicine and adopts all multidisciplinary intervention

techniques, following a method which promotes the reinstate- foot orthoses, a helmet redundantly instrumented with linear ment of the child in family, school and social environments. The accelerometers for the study of head position in the space, two clinical assessment, the rehabilitation program and the evalua- moving platforms with 1- and 3-degree of freedom for dynamic tion of sequelae require a multidisciplinary approach. The PRD posturography and balance rehabilitation. Moreover, a robot has a team including neurologists, physiatrists, developmental for the rehabilitation of upper limb movement disorders has age neuro-psychiatrists, psychologists, physical therapists, speech been adapted for the use with children. therapists and occupational therapists.

The Central Visual Impairment Service evaluates and treats There is no unique approach to satisfy the needs of patients the visual deficits that are often present in children with brain and their families. A rational approach must be taken, consider- damage: refraction deficits, optic nerve pathology, retinopaing the nature of the brain lesions and their consequences, their thies, strabismus, nystagmus, ocular dyspraxia, supranuclear extent, the treatment program, the personnel and the available gaze paralysis, visual agnosia. Main rehabilitative interventions services. Treatment consists of providing the optimum level of are fixation and ocular motricity exercises, visual attention imfavouring brain recovery, preventing the onset or aggravation of a provement exercises, visuo-motor and eye-hand coordination secondary damage, facilitating motor, cognitive and psychologi- training. Optimization of visual function is fundamental for the cal development and learning, allowing the maximum functional maturation and integration of language, intelligence, gait and recovery compatible with the current disability picture. Of fun- fine motor abilities. damental importance is the family’s involvement at this stage.

The neuropsychological assessment relies on clinical observaThey need guidance and support as they become progressively tion and administration of standardized psychometric tests alaware of the issues and needs of their child, their psychologi- lowing a comparison of performances at different ages, investigacal reactions and expectation of relations between tions. They are key playalterations on the test and ers in the rehabilitation specific brain areas, also program. The initial mulusing fMRI study. Possitidisciplinary assessment ble behavioural disorders, allows identification of family and social probthe primary objectives of lems are detected through the intensive rehabilitation clinical interviews, obserprogram, as defined on the vations of unstructured basis of the clinical evaluplaying and standardized ation, age and conscioustests. ness level.

Re-entry to school is In addition, the PRD accurately planned bealso has a Neurophysiopacause the problems in thology Unit, a Movement these children are differAnalysis and Robotic Lab, ent from those of patients a Neuropsychological Ser- The Paediatric Rehabilitation Department, Children’s Hospital with mental retardation, vice, a Dysphagia Centre, a Bambino Gesù, Rome (Italy). learning disabilities or beCentral Visual Impairment Service, for out and in-patients. havioural disorders. Before the patient’s discharge and with the In particular, the Neurophysiopathology Unit is devoted to parents’ assent, it is necessary to raise the teachers’ awareness of manage epileptic syndromes, to diagnosis neuromuscular illness- the child’s difficulties and to give indications to an appropriate es in developmental age and to study peripheral nervous system educational approach.

All the patients ought to receive a regular follow-up to as(e.g., brachial plexus paralysis, facial paresis, neuromuscular dissess the clinical and functional issues, update the rehabilitation eases, etc). The methods used are EEG; video and Holter EEG; EMG; sensitive and motor neurography; acoustic, visual and so- program and verify whether new complications have emerged.

The PRD of the Children’s Hospital Bambino Gesù, besides matosensory evoked potentials; motor evoked potential.

Three sections constitute the Movement Analysis and Ro- the clinical activity, has an intense medical research, with nationbotic Lab: a) the Videorecording Laboratory realizes bidimen- al and international scientific collaborations, like the Laboratoire sional images on 3 spatial planes for motor function documen- de Physiologie de la Perception et de l’Action, Collège de France, tation; b) two optoelectronic systems are used with disabled Paris (France) and the Massachusetts Institute of Technology, patients: one analyses kinetic and kinematic data and dynamic Mechanical Engineering Department, Boston (USA). muscular activity during gait, the other is devoted to the study of upper limb movement disorders during reaching and graspABOUT THE AUTHOR ing. These data permit immediate information about the dis- Enrico Castelli was born in Monza (Milan - Italy) in May 1956. Doctoral ability profile, the advantages and limits of orthosis, to verify Degree in Medicine and Surgery in 1983, Università degli Studi - Milan the effectiveness of surgical, rehabilitative and pharmacologi- (Italy). Postdoctoral specialization in Rehabilitation in 1986 and in Neucal interventions; c) in the robotic section, in collaboration rology in 1991, Università degli Studi - Milan (Italy). Since September with the Department of Mechanics and Aeronautics, “Sapi- 2005 Director of Paediatric Rehabilitation Department, Children’s Hospital Bambino Gesù - Rome (Italy). Main field of interest is the multidisenza” University of Rome (Italy), several ad hoc devices have ciplinary rehabilitation of patients in developing age affected by congenital been in-house developed and patented, like an automatic sys- or acquired brain lesions. Author of more than 50 scientific publications on tem for the evaluation of the 3D mechanical stiffness of ankle- neurological and rehabilitative items.

BRAIN INJURY PROFESSIONAL

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SPOTLIGHT ON NORWAY

SUNNAAS HOSPITAL TRUST

BY SVEINUNG TORNÅS The brain injury department is one out of three clinical departments of Sunnaas hospital trust, Norway’s largest rehabilitation hospital. The hospital offers rehabilitation services at the regional and national level in the specialized part of the healthcare system in Norway. The hospital is part of the University of Oslo and is publicly funded (approximately 39 million euro in budget for 2009). The basic missions of the brain injury department are rehabilitation (providing highly skilled, interdisciplinary inpatient and outpatient rehabilitation services to adults and children with complex needs/education of patient and relatives) and research and education (education and training of health personnel and medical students). The department has more than 150 employees and constitutes 57 beds. It is divided into three units: the stroke unit, the traumatic brain injury (TBI) unit, and the cognitive rehabilitation unit.

The department has a nationwide responsibility for patients with locked-in syndrome and patients in persistent vegetative state (PVS), and a regional responsibility for patients with severe stroke and severe TBI (GCS<8). The department has a special cognitive rehabilitation unit for patients with primarily cognitive impairments. Services in this unit include late phase rehabilitation services (a six-week, group-based program) and family weeks in the summertime. For patients with the most severe injuries, the average length of primary rehabilitation is approximately 65 days; for the cognitive rehabilitation unit, it is approximately 40 days. All patients are given the opportunity for a controlled stay (one week) one year after onset of the injury/disease. In addition, different assessment services are provided if necessary (i.e., driver’s license, work ability, rehabilitation potential, dysphagia).

The most important benefit that an individual receives because of Norway’s medical, social, and vocational systems is equal access to health services, independent of insurance, economical resources, and so on. The government is responsible for the health, social, and vocational services. In the future, there needs to be improvement in several of the services that are offered to individuals with brain injury, especially regarding intensive training of cognitive impairments. Furthermore, there is a need for a better understanding of brain functioning for patients with the most severe impairments and the appropriate rehabilitation efforts. There are quite a few examples of patients with a 14 BRAIN INJURY PROFESSIONAL

remarkable improvement years after the injury — even in cases where the professionals had told the relatives “to rest their case.”

It is also necessary to better bridge the gap among the different governmental services if the department is to deliver the best possible solutions. It should be the different professionals and services that gathered around the individual, not the individual who gathered the services — or met them time by time. For example, the health service has little impact on the vocational services, and it should be the goal that users of the services meet one united system of care — not a diverse system regulated by numerous laws and regulations.

The cost of rehabilitation services in Norway has increased more than the budgets in recent years. This is mostly due to increased salaries for the employees and that patients with more severe injuries survive due to improvements in the acute medical services. The consequence of this is there are less people to do a more difficult job. The main concern for the future is a bigger gap between the needs and the economical resources.

Norway is a sparsely populated country. Over the years, the department has developed several services delivered by videoconferencing, assessment and follow-up of patients, guidance, lectures, and seminars for the community-based health-care system.

These kinds of services need to be improved further.

More than twenty years ago, Lezak wrote the well-known article “Brain injury is a family affair.” This is still true. In the long run, it is the families who carry the burden and challenges of acquired brain injury. In the family weeks, in the late phase services the department staff members meet families who strive to make it through the day. Many children report that few, if any, have asked them about their experiences, thoughts, and hopes. It is the department’s experience that children can cope with many things — if given the opportunity to do so.

ABOUT THE AUTHOR

Sveinung Tornås, is a clinical psychologist who has worked in the area of traumatic brain injury rehabilitation since 1994. Currently he is the Director of The Department of Acquired Brain Injury at Sunnaas rehabilitation hospital. The last years he has been responsible for the development of a Norwegian system model of care for people with traumatic brain injury covering half of Norway’s population. His clinical research interest concerns family issues and sexuality.

conferences

Building futures…

2009 OCTOBER 14-17 – The North American Brain Injury Society’s Seventh Annual Conference on Brain Injury and the 22nd Annual Conference on Legal Issues in Brain Injury. Austin Hilton Hotel, Austin, Texas. Visit www.nabis.org for more information.

15-16 – International Symposium on Neurorehabilitation. From Basics to Future, Valencia, Spain.

Contact: www.neurorehabilitationvalencia.es.

27-30 – 20th Annual NASHIA State of the States in Head Injury Conference, Santa Fe, New Mexico. For more information, visit: www.nashia.org.

NOVEMBER 9-10 – 7th Annual Pediatric Brain and Spinal Cord Injury Conference, University of Miami, Miami, Florida. For more information, visit: www. pedibrain.org.

11-14 – 29th Annual Meeting of the National Academy of Neuropsychology, New Orleans, LA. For more information, visit www.nanonline.org.

2010 FEBRUARY 3-6 – 38th Annual Meeting of the International Neuropsychological Society, Acapulco, Mexico.

For more information, visit www.the-ins.org/meetings

For more information:

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For more than 125 years, Bancroft NeuroHealth has helped people with neurological and related disabilities rebuild their lives, step by step.

The goal of our person-centered programs is to help each person reach his or her maximum level of independence and lead the most fulfilling life possible.

With a range of community-based and campus-based options, Bancroft provides a full continuum of life skills rehabilitation for people with acquired brain injuries at several locations in New Jersey. These include a return to school, work, social and recreational activities.

Our outcomes-oriented planning encourages personal achievement — leading to both greater independence and reduced costs.

Holding Standards High.

24-27 – Biennial Interdisciplinary Conference of Brain Injury and the Family, Vienna, Austria. For more information, visit www.tbi-challenge.eu.

MARCH 10-14 – 8th World Congress of the International Brain Injury Association, Washington, DC. Contact: congress@internationalbrain.org or visit: www. internationalbrain.org.

21-25 – 6th World Congress for Neurorehabilitation, Vienna, Austria. For more information, contact Tracey Mole, traceymole@wfnr.co.uk or on the web, www.wcnr2010.org.

MAY 23-27 – 17th European Congress on Physical Medicine & Rehabilitation, Venice, Italy. Contact: www.esprm.org.

NOVEMBER 4-7 – 71st Annual Assembly of the AAPM&R, Seattle, Washington. For more information, visit: www.aapmr.org.

For over three decades Beechwood’s interdisciplinary brain injury program has been competitively priced and is nationally recognized for its comprehensive community-integrated approach. As a not-for-profit rehabilitation program, Beechwood has demonstrated that it is possible to provide state-of-the-art treatment at a reasonable cost to the consumer.

Services include: • Physical, occupational, speech, language and cognitive therapies and psychological counseling • Case management • Medical services including on-site nursing, neurological, physiatricand psychiatric treatment • Vocational services from sheltered employment through to community placement • Residential services on a main campus, in community group homes and supported community apartments • Outpatient services

A COMMUNITY-INTEGRATED BRAIN INJURY PROGRAM An affiliated service of Woods Services, Inc • Program Locations in PA 1-800-782-3299 • 215-750-4299 • www.BeechwoodRehab.org Beechwood does not discriminate in services or employment on the basis of race, color, religion, sex, national origin, age, marital status, or presence of a non-job related medical condition or handicap.

BRAIN INJURY PROFESSIONAL

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SPOTLIGHT ON SWEDEN

MEDICAL REHABILITATION AFTER ACQUIRED BRAIN INJURY IN SWEDEN The Department of Medical Rehabilitation, Danderyd University Hospital, in Stockholm Provides Outcomes-Based Services

BY ANIKO BARTFAI, PhD The Department of Rehabilitation Medicine, Danderyd Uni- bilitation phase of recovery. This unit’s 33 beds are in single and versity Hospital, in Stockholm serves patients who are of work- double rooms. The average length is 60 days but may vary to ing age—adults from 18 years old until retirement at age 65. As accommodate patient needs. Treatment is provided on the unit, the largest rehabilitation hospital organized in Sweden and aca- in the activity center of the rehabilitation clinic, and at the hosdemically connected to the Karolinska Institute, it provides re- pital’s physiotherapy center.

Patients on both inpatient units have unencumbered access habilitation for persons following stroke, traumatic brain injury, subarachnoidal hemorrhage, anoxia, and other non-progressive to medical rehabilitation specialists and multidisciplinary teams plus the resources of the acute care hospital as they need them. medical conditions affecting the central nervous system.

The department’s regular catchment area is greater Stock- Their length of stay is regulated by the predicted outcome, not holm, but occasionally patients are received from other parts of by regulations. the country and from other nations; the severe brain injury unit, for example, cooperates with hospitals in Greece.

Outpatient teams coordinate vocational rehabilitation CARF International awarded three-year accreditation, the Working in tandem with the inpatient services, the outpatient highest level available, for numerous programs of the Depart- team serving persons who have severe brain injury devotes attenment of Rehabilitation Medicine, Danderyd University Hospi- tion to patients’ education and career development during the tal including brain injury inpatient rehabilitation, vocational outpatient rehabilitation phase. services, and outpatient rehabilitation The team also works closely with Patients’ length of stay is regulated by the for both single and multiple services. families to ensure a stable home enCARF also awarded the department vironment. Family support groups predicted outcome, not by regulations. three-year accreditation for its comare regularly conducted, and support prehensive occupational rehabilitation, outpatient single ser- groups for children whose parents have suffered brain injury are vice, and outpatient interdisciplinary pain programs. organized as they are needed.

Medical rehabilitation after acquired brain injury in Sweden Three outpatient teams provide daycare, vocational, and subis funded by the public health insurance system. Vocational reha- acute rehabilitation for persons who have mild to moderate brain bilitation generally starts in a medical setting and is continued by injuries. To increase accessibility, one of the teams is based in the rehabilitation services coordinated by the Department of La- Huddinge, a suburb of Stockholm. bor. The community of residence of a severely injured patient is A diagnostic team of medical rehabilitation specialists, neuresponsible by law for the patient’s social welfare and assistance. ropsychologists, and occupational therapists specializes on dif(Services for children under 18 are provided by separate Child ferential diagnoses for persons who have mild head injuries.

Rehabilitation Services.)

More than 500 patients are served each year by the hospital’s outpatient teams, and the length of outpatient rehabilitation varThe hospital’s two inpatient units serve persons whose acuity ies, depending on the patient’s individual needs. range from severe to moderate

In the Danderyd University Hospital’s unit for persons who have severe brain injury, all rehabilitation services, such as occupational and physical therapy, are available, depending on the patient’s individual needs. Each of the 10 patient rooms has a single bed.

The unit’s high staff to patient ratio adds the possibility for longterm rehabilitation—up to two years.

The second inpatient unit serves persons who have moderate acquired brain injury and are in their acute or subacute reha16 BRAIN INJURY PROFESSIONAL

Hospital strives for continuous quality improvement The Department of Medical Rehabilitation, Danderyd University Hospital, is completely transparent in its efforts to improve its services. Areas identified for possible improvement are: 1. Bridging the gap between child and adult services. In cooperation with Child Rehabilitation Services at Karolinska University Hospital in Huddinge, the department is exploring plans to expand services for young adults who need sup-

port to achieve independence after having suffered a brain injury in childhood or adolescence.

2. Transferring between medical and community care. The department’s connection with several leading neuroscience research groups at the Karolinska Institute carry out the advances in science for persons with brain injury.

3. Providing follow-ups and recurrent rehabilitation to maintain and improve patients’ performance. The department’s daily challenges are to bring rehabilitation up to evidencebased standards; to provide intensive motor, cognitive, and speech retraining; and to offer sophisticated compensatory strategies. Intensive retraining for patients requires high staff density, new rehabilitation techniques, ongoing staff education, and a willingness to embrace change.

Research is required now and in the future More knowledge needs to be gained on which patients can be successfully trained, in what stage, and to what extent. The knowledge can maximize gains, predict accurate prognoses, and avoid raising false hopes. All of these require research, research, research. Research ranges from nutritional needs after severe brain injury to cognitive group treatment for mild head injuries.

The staff and faculty are proud of the department’s integration of clinical services, research, and teaching. Two full professors, an associate professor, senior and junior research staff, and graduate students—most commonly recruited from clinical staff—are affiliated with the department’s research and teaching. The department’s clinically-based education model has won awards for its education of future rehabilitation professionals, nurses, occupation therapists, and physical therapists.

IT- based assistive technology supports independent living The department emphasizes the interface between the person, medicine, and technology. The department is collaborating in research of IT-based retraining and evaluation of supportive technology. Two development areas are assistive devices and improved rehabilitation techniques in the use of these devices.

The department has already helped evaluate a number of IT-based assistive devices. In a European Union collaboration project, the department built one of the first “smart homes” for transitional living. The apartment is equipped with safety and security features to alert an occupant with brain injury. For example, the range is prevented from overheating, water overflow is detected, and controls will open and close windows and doors.

Logging occupant mistakes ensures a reliable objective assessment of a person’s capacity for independent living and the need for assistive devices. The apartment was recently evaluated in a doctoral thesis on occupational therapy.

In the future, patients, families, society, and industry will expect more sophisticated services and improved outcomes. The Department of Medicine at Danderyd University Hospital is preparing to meet and exceed these expectations.

ABOUT THE AUTHOR

Aniko Bartfai, Ph.D., is a specialist in neuropsychology and who has worked in psychiatry and with adult brain injury since 1973. Currently she is one of the process leaders for the brain injury process at the Department of Rehabilitation Medicine, Danderyd University Hospital and adjunct associate professor at the Department of Clinical Sciences, Karolinska Institute.

Her research interests cover mild TBI and diagnostic issues, cognitive and neuropsychological rehabilitation following mild and moderate brain injury in adults, and the possibilities of new IT-based technology for assessment of needs, retraining and support for persons with brain injuries.

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BRAIN INJURY PROFESSIONAL

19

SPOTLIGHT ON IRELAND

INNOVATIVE PRACTICES AT THE NATIONAL REHABILITATION HOSPITAL

BY JACINTA MCELLIGOTT AND VALERIE TWOMEY

The National Rehabilitation Hospital (NRH) is a 119-bed tertiary rehabilitation unit for the under 65 population. NRH provides a wide variety of brain injury services to persons in the Republic of Ireland, which is currently estimated to have a population of approximately 4.2 million. The Brain Injury Programme (BIP) at the NRH is currently the only national inpatient rehabilitation service for persons with acquired brain injury (ABI) and provides co-ordinated specialist, interdisciplinary and outcomes focused rehabilitation for persons served.

The overall incidence of acquired brain injury in Ireland to date is approximately 300 per 100,000 persons with a mortality rate of 7.5 percent. For every trauma death there are three to four permanent and often long-term disabilities. In the Republic Of Ireland, approximately 13,440 cases of ABI present each year, and it is estimated that there are currently 30,000 persons living in Ireland between the ages of 16 and 65 with long-term disabilities resulting from ABI. The NRH is a CARF- (Commission on Accreditation of Rehabilitation Facilities) accredited facility providing acute inpatient medical rehabilitation, with 46 beds dedicated to adult brain injury. The NRH also accepts children with acquired brain injury into its eight-bed paediatric programme. The NRH is located in the southeast area of Dublin, in proximity to five major teaching hospitals, including the National Neuroscience and Neurosurgical Centres. Referrals for patients with brain injury are received from across the country, with a large number of referrals from Ireland’s rural populations. The NRH has five Medical Re-

The National Rehabilitation Hospital, County Dublin Ireland 20 BRAIN INJURY PROFESSIONAL

habilitation Consultants (physiatrists) for brain injury, and each consultant receives referrals from the four major Health Service Executive (HSE) areas. The NRH provides Rehabilitation Consultation in three of the five major teaching hospitals in Dublin and also provides outreach services through a specialist brain injury liaison nurse nationally.

Services provided and the portion of the continuum offered

The BIP, in conjunction with the persons served and their families/carers, provides individualised, goal-directed rehabilitation designed to lessen the impact of impairment and to assist people with ABI to achieve their desired levels of functional independence, social participation and community reintegration.

The NRH has developed a full continuum of care for persons with ABI. This continuum includes: • Brain Injury Inpatient Rehabilitation Programme (BI/IP) • Brain Injury Outpatient Rehabilitation Programme (BI/OP) • Brain Injury Home- and Community-Based Rehabilitation Programme (BI/HCB) • Brain Injury Vocational Services (BI/V) This comprehensive interdisciplinary system of continuum of care ensures that all individuals can receive the most appropriate programme of care based on their injuries and their individual rehabilitation needs. Treatment can begin anywhere in this continuum, and persons served can progress through this continuum and to other appropriate community and follow-up services. Adjacent to its inpatient hospital, the NRH also has a new stand alone interdisciplinary outpatient facility that provides medical, rehabilitation and nursing outpatient care Monday through Friday from 9 a.m. to 5 p.m.

The Brain Injury Programme also provides specialist services in the assessment and management of patients with profound brain injury (vegetative and minimally conscious state) and a specialist Neurobehavioral Clinic for patients with severe challenging behaviours secondary to brain injury. The NRH has the only multidisciplinary spasticity management service in Ireland which includes intrathecal baclofen therapy.

In keeping up to date with the challenges facing our persons served, the Brain Injury Programme provides long-term followup and management of brain injury through review of outpatient

services and uses video and teleconferencing for outreach to remote urban and rural areas. The BIP also has close links with a residential vocational and rehabilitation training unit located on site at NRH.

Benefits that an individual receives because of Ireland’s medical, social, and vocational systems

Ireland’s medical, social and vocational systems are largely publicly funded. Governed by the public body of the Health Services Executive (HSE), there is no cost for services to individuals or their families. The National Rehabilitation Hospital is a publicly financed, voluntary, free-standing hospital. Recent re-organisation (2005) of the Irish healthcare system has been designed to improve access to and delivery of service across Ireland with the implementation of community based acquired brain injury services located within each of the health service areas.

Services that could be improved for individuals with brain injury

Ireland has a very limited number of inpatient beds and is severely limited in the number of rehabilitation consultants, allied health professionals and inpatient services dedicated to the brain injury population. The services in acute hospitals are particularly fragmented as Ireland has yet to develop co-ordinated trauma systems of care or regional inpatient rehabilitation services for the under 65 population. Patients may wait for excessive periods in outside facilities for services, particularly as the shortfall in bed availability and service provision limits the capacity at the NRH and the acute hospitals and communities to meet the needs of the population in Ireland.

Concerns in the future of brain injury services

Ireland is currently limited in the delivery of rehabilitation services, and without continued development and planning, service to patients will continue to be compromised. It is most unfortunate and concerning that the global financial crisis has come at a time when the Irish Health Service Executive is at a point of needed investment, change, reorganization and development of rehabilitation services in Ireland. The Phillips Report (2008), which was the first National Report on Traumatic Brain Injury in Ireland, reported that “Detailed injury data makes it possible to develop prevention measures, monitor injury trends, prioritise issues, guide policies and evaluate the success of interventions designed to reduce injury”.

This report provides the Irish public, health care workers and policy makers with some of that data. However, it fails to address the issues of persons with acquired brain injury beyond their neurosurgical intervention and does not address their rehabilitation needs. To date, there are only a limited number of national TBI studies available within Europe. A systematic review in 2005 cites six national studies (two from Germany and one from Denmark, Sweden, Finland and Portugal). Differences in patient identification, variations in injury severity definitions and data reporting methods have created difficulties in comparing studies.

Unique innovative practices

Each year, the NRH discharges a significant number of patients to rural underserved areas of Ireland. The innovative use of Teleconferencing has become an essential and useful practice at NRH in linking the NRH interdisciplinary teams with rural communitybased brain injury teams, especially in the predischarge planning for patients with severe brain injury and complex needs.

Families in long-term rehabilitation see challenges in interpersonal relationships and support

Families and carers are partners in the rehabilitation process and are encouraged to participate in all phases of the BIP. Information, counselling and emotional and psychological support can reduce the emotional sequelae experienced by the family/carer.

This support may help them to adapt to and come to terms with life changes, and so result in better long-term outcomes for both the patient and the family. Rehabilitation is a continuous and life long process. The carrying over of new skills gained in treatment into daily activities and into discharge environments is critical to the success of any rehabilitation programme. Many services are available within the BIP to meet the needs of the patient’s family/ carers including: • Education/training about management of ABI-related issues (e.g., NRH Stroke Awareness for Carers programme, Supporting Partners of People with Aphasia in Relationships and Conversations ( SPPARC, Brain Injury Awareness Training.

• “Meet and Teach”, printed resource material, informal instruction and practical skills training in preparation for discharge).

• Psychological support services • Pastoral and spiritual services • Patient and Family Advocacy and Liaison Service • Peer support through interaction with other families and various community support groups (e.g., Brí, Peter Bradley Foundation and Headway Ireland).

• Information about community support, advocacy, accommodation and assistive technology resources are also provided.

The Paediatric Programme at the NRH provides a unique summer programme for children and their families to attend, where they can avail of medical, rehabilitation and nursing care follow up and review, in addition to engaging in recreational and support activities during the summer holidays.

ABOUT THE AUTHOR

Dr Jacinta McElligott is a Consultant in Physical and Rehabilitation Medicine at the National Rehabilitation Hospital in Ireland where she serves as medical director of the comprehensive inpatient medical rehabilitation programme. She is also a Clinical Associate Professor in the Department of Physical Medicine and Rehabilitation at East Carolina University in North Carolina. Dr McElligott’s practice is primarily in the rehabilitation care and management of patients with severe disabling impairments associated with brain injury and spinal cord injury. She has a special interest in complex spasticity management particularly intrathecal baclofen therapy. Dr McElligott’s research interests include trauma rehabilitation integration and outcome and complementary and alternative medicine. Her current interests include clinical application of telerehabilitation and development of traslational research capacity at the National Rehabilitation Hospital.

Dr McElligott is a delegate from Ireland for the section of Physical and Rehabilitation Medicine of the European Union of Medical Specialist.

Valerie Twomey, BA, M.Psych.Sc., Dip.Clin.Neuropsych, is Brain Injury Programme Manager at the National Rehabilitation Hospital, Dublin, Ireland. She is also a Senior Clinical Neuropsychologist at the hospital where she has worked for 8 years. Previous appointments have also been held at the National Neurosurgical Centre in Ireland, Beaumont Hospital. Valerie holds affiliate lectureships in Trinity College and University College Dublin among many others. Valerie is currently Chairperson of the Special Interest Group in Neuropsychology associated with the Psychological Society of Ireland and represents Ireland in the Federation of the European Societies for Neuropsychology. Her research, past and present, focuses on remediation and rehabilitation of cognitive (memory, learning and executive) deficits associated with acquired neurological disease and the implementation of group and individual interventions for acquired brain injury.

BRAIN INJURY PROFESSIONAL

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SPOTLIGHT ON IRELAND

ACQUIRED BRAIN INJURY IRELAND:

An Innovative Response to a Silent Epidemic

BY BARBARA Oâ&#x20AC;&#x2122;CONNELL, MBA, DIP, COT Acquired Brain Injury Ireland in Context

A Not for Profit organisation born out of the desperation of Peter Bradleyâ&#x20AC;&#x2122;s family in seeing the only place for their family member (then aged 42) with an Acquired Brain Injury (ABI) was a locked ward of a nursing home for people with dementia. The solution was to develop a specialist expertise in ABI and establish a relationship with existing public community services to offer an appropriate and effective model of service delivery of specialist ABI Community Rehabilitation.

Acquired Brain Injury Ireland (formerly the Peter Bradley Foundation) was established nine years ago in collaboration with the government in the Republic of Ireland (ROI) through the Health Service Executive (HSE) to assist with their locally identified ABI needs. The ROI has in excess of four and a half million population and services for people with disabilities are formally commissioned by the HSE. For Peter and two other men, similarly inappropriately placed, a new residential model of ABI Assisted Living was developed and a measure of the success is that within 6 years there were 14 Supported Living Residences in communities across Ireland spanning all four Health Service Executive (HSE) Regions.

Gene, a 47 year old former electrical engineer was destined to a life in a nursing home, following his discharge from the National Rehabilitation Hospital. While without any physical or sensory impairment he required supervision at all times. His wife was unable to provide this essential support. Once again, following a successful pilot programme Acquired Brain Injury Ireland in partnership with the HSE developed a new Home and Community based model of Rehabilitation. A trained Rehabilitation Assistant under clinical supervision worked with him 35 hours per week. This enabled Gene to remain in his own home.

22 BRAIN INJURY PROFESSIONAL

This service was eventually phased out after 6 months as he made progress; Gene could then attend a fulltime training programme independently needing only telephone support. Today ABI Ireland merely checks in with Gene and his wife on a monthly basis.

Spanning our four regions, today Acquired Brain Injury Ireland has 15 clinically supervised accredited Home and Community Outreach Services in four geographical regions specialising in services for people with ABI. These services place critical emphasis on client centeredness, quality, effectiveness and value for money. Rehabilitation and clinical support are key aspects of the service.

ABI in the Irish Context

Acquired Brain Injury (ABI) is a leading cause of death and disability in Ireland1-3. The life-long personal, economic and societal cost and the need for rehabilitation are undocumented at a population level. Therefore there is no population register of persons with ABI in Ireland which results in Irish figures being imprecise reflecting an underestimation of the true incidence and prevalence of ABI within twenty-six counties. Moreover, Ireland has just one post acute rehabilitation facility, National Rehabilitation Hospital (NRH) with 100 inpatient beds for the entire population of 4.5 million with only 40 beds for Acquired Brain Injury. This facility is on the east coast in Co Dublin. A significant number of patients are therefore discharged home, or into nursing homes, long stay community hospitals or other inappropriate settings.

It was against this background that the Peter Bradley Foundation, now ABI Ireland was set up in 2000, responding to the specialist needs of what were and still are a marginalised and forgotten group of individuals and their family carers.

ABI Incidence and Prevalence in Ireland.

Despite differences in criteria used to define TBI, most incident rates (hospitalised and fatal) were in the range of 150-300 per 100,000, with an overall average incident rate of 235/100,0005 . The prevalence rate of TBI in the general population includes not just new diagnoses, but the total number of people with TBI in the population at any one time, (including those with TBI sequelae such as impairment, activity limitation and restriction of participation.)

Few studies internationally have attempted to document the level of TBI and its consequences in the community, and there is little consistency in terms of definition of severity and duration of distribution. One Danish study6 conservatively estimated the population prevalence at 317/100,000 (only those precluded from working were included), however a more realistic estimate from the US7 (which includes related impairment and disability) is 1893/100,000 (approximately 2%) and from the UK (among working adults under 65) is 1200/100,0008.

If these estimates are applied to the Irish population, there are 34,890 people of working age and 80,000 individuals in the general population living with TBI related impairment or disability (Table 1). However, this is likely to be a significant underestimation of the true prevalence.

STROKES

BSRM Best Practice Guidelines recommend that:

•

People with Acquired Brain Injury have access to specialist services, There is a clear rehabilitation pathway with a continuum of care, People with Acquired Brain Injury may require different services at different times, People with Acquired Brain Injury may require multiple services, Specialist support for the family is an essential component of rehabilitation, Services should be co-ordinated and integrated, and People should have access to life long support if needed.

(British Society Rehabilitation Medicine, 2004; NSF for Long term Conditions 2005)

• • • •

Moreover, Irish research in 2006, found the prevalence of self-reported stroke for the general population in Ireland is 100/100,000 or 500/100,000 for those over 6510. For those who survive only half make a complete recovery. Many are left with significant disabilities including hemi-paresis (48%), inability to walk (22%), need for help with activities of daily living (24-53%), clinical depression (32%), and cognitive impairment (33%)2.It is estimated that there are approximately 30,000 people living with serious consequences of stroke in Ireland2.

It is therefore estimated that there are currently, at least, 127,894 people living with the sequelae of ABI in Ireland today.

ABI results in physical, communicative, behavioural, emotional and cognitive problems that can affect every aspect of the individual’s and their families’ lives.

In Ireland, funding for people with ABI in the community is divided out amongst those with a ‘physical and sensory disability’. Whilst ABI fits within this grouping it also straddles mental health and intellectual disability. To date people with ABI, unlike the USA, have not been identified as a specialist group nor is there any designated funding.

TABLE 1

• •

Acquired Brain Injury Ireland Rehabilitation Care Pathway

Acquired Brain Injury Ireland is the first and remains the only service provider of ABI Community Rehabilitation in the Republic of Ireland to have been accredited through the Commission for Accreditation Rehabilitation Facilities (CARF). This international recognition places the ABI Ireland among American, Canadian and European leaders in the field of ABI Rehabilitation. CARF accreditation involves peer review and reassures the Foundation’s clients and their families as well as other stakeholders that the services they receive meet the highest standard of excellence.

In 2002 the organisations Board of Directors appointed its first Chief Executive as a direct result of positive external evaluations of pilot services and in response to HSE locally identified TABLE 2

Slinky Model (RCP, 2003) Reducing disability

Acute care (LOS) 5-7 days) Post-acute in-patient Specialist Rehabilitation (LOS 40 days)

Longer term community support British Society of Rehabilitation Medicines (BSRM)

Rehabilitation Care Pathway for People with ABI

Acute Hospital

Post Acute Rehabilitation

HSE Primary Care Teams

Improving activity

Community based rehabilitation Re-assess as required

It is accepted that the Republic of Ireland urgently needs to establish mechanism whereby all individuals with symptomatic ABI can access the services they need as and when they need it.

As neurological recovery following ABI occurs over an extended period of many months or years, fundamental to rehabilitation services is the appreciation that different patients need different input at different stages in their recovery.

The Acquired Brain Injury Ireland model of service has its roots in both the BSRM Brain Injury Rehabilitation Slinky Model and guidelines of best practical (see Table 1) and World Health Organisations’ (W.H.O) Classification of Functioning Health and Disability (ICF). This is a bio-psycho social model which attempts to combine aspects of both the medical and the social model.

Enhanced participation

• • • • • • • • • • • • •

Community Specific Rehabilitation Services Information & Education Social Case Management Assisted Living Community Rehabilitation Transitional Respite Rehabilitation Training Vocational Training Day Resources Family Services Counselling Palliative Care

ABI Case Manager One Point of Contact Other Disability and Mainstream Services and Supports Geographical Rehabilitation Teams

Client and family/carer Assessment Service Evaluation and Follow Up Neuro Rehabilitation Neuro Psychology Home Liaison/Social Worker Speech and Language Therapy Physiotherapy Key Worker Rehabilitation Assistants Others

• • • • • •

Home Work Health Leisure Education/Training Entitlement

BRAIN INJURY PROFESSIONAL

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need. The securing of vital core funding, from the Department of Health, in 2004 enabled the company to further address need through the establishment of its national framework or regional structure.

ABI Ireland’s four Regional Hubs relate to the four HSE regions across the ROI. Each is led by a Regional Manager and supported by an interdisciplinary team made up of a range of rehabilitation professionals.

The Regional Hubs are designed to respond efficiently and effectively to identify local need and work closely with the HSE to address needs. The interdisciplinary teams not only carry out assessments, but also provide rehabilitation and ongoing evaluation. The teams supervise and train staff and provide ongoing support for all Acquired Brain Injury Ireland services in that region. In addition, they also provide outreach services including ABI specific training to other organisations within their communities.The team ensures that the client and his/her family have access to appropriate services in a timely and effective manner.

Within this overall team working model there are a number of key elements including the role of the Case Manager.

The Case Manager: Acts as single point of contact and provides a clear care pathway from acute settings through post acute and into community rehabilitation service.

• Links with the Primary Care Team (PCT) the HSE first point of contact. The Case manager identifies the clients in hospital and acts as a bridge between them and the community and effectively links up services.

• Reduces the number of clients that ‘fall through the net’ and provide support appropriately.

• Provides ongoing case management through a monitoring service/role as part of the team.

• Advocates on behalf of the client when there are service gaps.

The Interdisciplinary Team

Core team members include: Case/Community Services Manager, Clinical Neuropsychologist, Rehabilitation Assistants, Neuro Rehab Occupational Therapy, Specialist Social Work/ Family Liaison, Speech & Language Therapist and Physiotherapist.

In cases where the clients needs require additional services and/or supports the ABI Ireland networks with acute, post acute and community services to address these needs. This is particularly essential when there is dual or multiple diagnoses (e.g., mental health difficulties, alcohol drug addiction).

• •

Acquired Brain Injury Ireland Services 2009

The following gives a brief overview of the range of ABI Specific services currently provided by the Acquired Brain Injury in the Republic of Ireland today.

• Supported Living – home from home in the community (14 Residences at present across all the HSE regions, including Transitional Living residence in Sligo).

• Community Rehabilitation/Outreach Services (15 Services currently across all HSE regions) • Case Management (7 Case Managers in place) • Day Resource Service (3) Based on the Clubhouse Model.

• Family Support Services (includes therapy groups, education and general support). Currently 240 family carers are involved in ABI Irelands ABI specific training the programme run over six days and offered in various regional locations.

• Psychological Services (includes assessment, behavioural programmes, counselling and cognitive rehabilitation, cognitive behavioural therapy and parenting programmes.)

• Home Liaison/Social Work (includes counselling, mediation, community access, grief and loss support groups.

• ABI Awareness, Information, Training & Education Programmes (both internal & external) ABI Ireland is working with BIAA/AACBIS and has had thirteen ABI professionals complete the CBIS training programme – 2009 will also see two ABI Ireland staff trained as trainers to help ensure further ABI specialists receive this vital training.

Addressing Unmet Need

The current strategic objectives of ABI Ireland are as follows: •

•

•

The work of the Team

Included in the interdisciplinary team work are the following key roles: • • • •

Conducts a comprehensive needs’ assessment of all clients referred.

Engages in a joint decision making process based on the needs assessment and joint planning to ensure the most appropriate services are made available to the person.

Ensures the range of specialist and non-specialist services required by the person and family is coordinated centrally by the team.

Monitors to ensure communication between services and the individual’s integrated person centered plan that addresses all the person’s needs.

24 BRAIN INJURY PROFESSIONAL

Reviews the person’s overall progress, supports and ongoing needs (jointly with all stakeholders).

• • •

•

To ensure continuous ABI Quality Assurance. Having achieved international recognition through CARF for ABI specific service provision, the ABI Ireland strives to ensure continuous quality improvement which promotes real and meaningful outcome measures including value for money for all stakeholders.

To continue to develop a range of pioneering flexible and tailor-made services for people with ABI in response to local needs, ensuring equal geographical spread by strengthening the four regional Hubs.

This facilitates a timely flexible response to an often traumatic event. Reduces the strain on the NRH, allows access to specialist rehabilitation in the community ensuring people can remain at home. It develops regional expertise which can be shared across the disability sector. Ultimately, reduces costs by developing a national framework, allowing local development which responds to local identified need.

To get Acquired Brain Injury recognised, established and funded as a named category aside from Physical and Sensory Disability.

This will assist with service planning as the population will be identified and proper assessment of need can be assessed.

To secure appropriate additional funding for this hidden and complex disability group which is currently considerably under-resourced. The cumulative effect of lack of recognition has resulted in a very significant build up of unmet ABI needs across the country.

To support the development of a National Framework for

•

the Future Planning of publicly funded ABI services.

To secure appropriate resources to carry out full epidemiological research to reflect prevalence, effects and needs in relation to ABI in Ireland in order to assist provision of planning, development and service/support delivery. Data collection on effects of ABI on the family/carer is also vital.

ABI in Ireland Looking Forward

ABI, as we are all aware, is a complex and often hidden disability affecting not only individuals, but whole families. In the Republic of Ireland there is much unmet need. While we have experienced growth in service provision over the past nine years, this is only the tip of the iceberg in relation to incidence, prevalence and meeting identified yet unmet need. The situation remains serious and unacceptable.

Acquired Brain Injury Ireland believes the key to appropriate rehabilitation is an ABI specific package of care and rehabilitation across a lifetime delivered in a timely manner.

As a CARF accredited organisation we will not only continue to highlight the effectiveness of quality rehabilitation within the community but also strive towards ensuring that these services will , in the not too distant future , be available to everyone who needs them – regardless of geographical location.

With this in place, the Acquired Brain Injury Ireland, in partnership with the individual and all stakeholders, can make a real difference in rebuilding shattered lives.

REFERENCES 1.

Department of Health and Children. Health Statistics Report. Dublin, 2005.

2.

Irish Heart ABI Ireland and Department of Health and Children. National Audit of Stroke Care. Dublin: IHF and DoHC, 2008.

3.

Traumatic Brain Injury Research Group. National report on traumatic brain injury in the republic of Ireland. Dublin, 2008.

4.

Lanoo E, Brusselmans W, Van Eynde L, Van Laere M, Stevens J. Epidemiology of acquired brain injury (ABI) in adults: prevalence of long-term disabilities and the resulting needs for ongoing care in the region of Flanders, Belgium. Brain Injury 2004; 18:203-11.

5.

Tagliaferri F, Compagnone C, Korsic M, Servadei F, Kraus J. A systematic review of brain injury epidemiology in Europe. Acta Neurochir (Wein) 2006; 148:255-68.

6.

Engberg A. Severe Traumatic Brain Injury - epidemiology, external causes, prevention and rehabilitation of mental and physical sequelae. Acta Neurol Scand 1995; 92s:9-151.

7.

Langlois J, Rutland-Brown W, Thomas K. Traumatic Brain injury in the United States: emergency department visits, hospitalisations and deaths. Atlanta: Centres for Disease Control and Prevention, National Center for Injury Prevention and Control. 2004.

8.

Department of Health. The National Service Framework for Long-Term Conditions. London: Department of Health, 2005.

9.

Feigin V, Lawes C, Bennett D, Anderson C. Stroke Epidemiology” a review of populationbased studies of incidence, prevalence, and case-fatality in the late 20th century. Lancet Neurology 2003; 2:43-53.

10.

Central Statistics Office. Health Status and Health Service Utilisation. Quarterly National Household Survey. Quarter 3. Dublin: Central Statistics Office, 2007.

11.

MacDonald B, Cockerell O, Sander W, Shorvon S. The incidence and lifetime prevalence of neurological disorders in a prospective community-based study in the UK. 2000 Brain;123:665-76. 1999;282(974-983

ABOUT THE AUTHOR

Barbara O’Connell, MBA Dip COT is the Co founder and President / Executive director of Acquired Brain Injury Ireland who provide community and residential rehabilitation programmes to people with Acquired Brain Injury. She is an Occupational Therapist by profession with an MBA. Across her career she has worked directly with clients and staff in Adult and Adolescent Psychiatry , Intellectual Disability, and for many years as a manager in the National Rehabilitation Hospital, pioneering the design of, implementation and management of social re-integration programmes for people with ABI, bridging the identified gap between post acute services and return to the community. Barbara is a sister of Peter Bradley, who has an ABI and inspired the foundation of Acquired Brain Injury Ireland.

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SPOTLIGHT ON SOUTH AFRICA

A SIMPLY SELF-SUSTAINING SYSTEM SOUTHERN AFRICA Community Based Reintegration Post ABI

BY ALISON MADDEN, PhD

On a continent characterized by ongoing changes in politi- the community in managing and maintaining persons with accal, economic and educational systems, the provision of health- quired neurological and neuro-psychological impairments in a rural environment. The underlying philosophy is based on the care remains an exciting challenge.

This paper is a description of an emerging service in the belief that communities and individuals have the inherent casmall town of Riversdale in South Africa, in the farming district pacity to provide the structural and behavioural systems which of the Hessequa which covers an estimated 300 square kilome- accommodate impaired persons whereby reducing the need to access primary, secondters of undulating lands ary and tertiary medical bordered by the sea on services once the client the east and the mounhas been diagnosed as tain and plains on the medically stable. The west. Distances between aim of this service is to communities are too reduce the dependence great to walk and there on both medical and trais no public transport. ditional therapeutic hosNearly half of the people pital models by affording of the area are unemthe carers and clients the ployed, but children are tools, education and opstill at school. The peoportunities to assume ple speak a mixture of personal responsibility languages, and the peofor achieving relative inple of the area are mainly dependence. descendants of the KhoiAfter discharge from San with Afrikaans being hospital, the client tothe dominant language. gether with the primary The primary health care carer is offered a transisystem offers a small 60 Farm cottages serve to bridge the gap between the hospital tional period in simple bed hospital with a mo- bed and the home. farm cottages which serve to bridge the gap between the hosbile unit attached to it to service the district.

For the bulk of the population, rehabilitation after brain pital bed and the home. This affords a gradual shift in responinjury in Southern Africa ends with discharge from hospital. sibility for rehabilitation from the medical model to the client The belief that there is the possibility of recovery, of acquiring and family through a primary care-giver. The days are routine new skills or training old ones and of a chance of regaining a with the emphasis on activities of daily living, communication place in the community, are foreign concepts to most families and behavioural controls.

Access to workshops equipped with mentors is afforded of survivors of brain injury.

The primary focus of this system is the empowerment of when the client is ready and their pre-trauma skills and inter26 BRAIN INJURY PROFESSIONAL

ests are matched with the available tasks and activities. All tasks are functional and items have to be saleable.

Underpinning all activities, is the graded shift in responsibility for behavioural control, decision-making, task completion and group integration from the carer to the client.

Implicit in this stage of rehabilitation is the awareness of belonging to a self-sustaining small business of which he or she is an integral part.

Proximity to the village is essential so that gradual introduction to banking, to shopping, to socializing and to community activities may take place. This is managed through the primary carer.

The time spent acclimatizing to the new environment is difficult to determine, but experience thus far has shown that over time and with the clarity of structure and the consistency of care, the client is often in the position to make his or her own decision as to when it is time to go.

ABOUT THE AUTHOR

Dr. Madden is a Chartered Psychologist specializing in the diagnosis and neuro-rehabilitation of persons of all ages with acquired neurological change. Born in Cape Town and educated and worked in South Africa, Germany and Canada. She has a commitment to the re-integration of people back into the family and into their community with a particular belief in the inherent capacity of people to care for their own family and community members if just given the tools and confidence to do so.

Check out the NABIS Career Center!

View nationwide jobs in the brain injury field or post your own resume!

BRAIN INJURY PROFESSIONAL

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By Kit Malia & the complexity and impact of acquired brain Anne Brannagan ~ 2008 injuries, This workbook is filled with practical These manuals take a practical exercises for clinicians, families, and hands on â&#x20AC;&#x153;How toâ&#x20AC;? approach to individuals to use in rehabilitation settings, cognitive rehab therapy. They have been written specifically community programs and at home. for therapists and families working with and living with persons with brain injury.

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bip expert interview AN INTERVIEW WITH CHRISTINE CROISIAUX, CHAIR OF THE BOARD OF THE EUROPEAN BRAIN INJURY SOCIETY

ABOUT CHRISTINE CROISIAUX Christine Croisiaux is a clinical psychologist who has worked in the field of neuropsychology since 1989. Currently, she is director of La Braise in Brussels, Belgium. La Braise serves long term TBI adults with different programs: a day care center, an accompaniment service, and a cognitive rehabilitation center. She is concerned about daily life after TBI: how to help adults and his/her famaily to get through the different steps of reintegration and return to the community. She is also president of the European Brain Injury Society (EBIS).

When, how, and why did the European Brain Injury Society (EBIS) begin?

1986. The Confederation of Family Organisations in the European Union (COFACE) and Ligue pour l’Adaptation du Diminue Physique au Travail (LADAPT) organised the first European meeting on the topic of social rehabilitation of persons with severe head injuries. The European Commission supported this enterprise. The meeting resulted in the setting up of a European working group for the study of severe head injuries and social rehabilitation, coordinated by Professor Jean-Luc Truelle (France).

1987 and 1988: Two more European meetings were held on family problems and on the assessment of patients with head injuries.

1989: EBIS was created based on the informal group that was born in 1986.

From the start, EBIS was a member of the Dialogue Group on “Handicapped Persons” of the European Commission, Directorate General (DG) V - Social Affairs and Employment, and is now a member of the European Disability Forum.

EBIS was awarded a research contract with the European Commission DG XII - Research concerning the coordination on a European level of various aspects of head injury (epidemiology, evaluation, and service delivery), coordinated by Professor Neil Brooks, second president of EBIS. EBIS presently has 140 individual and institutional members coming from all the countries of the European Union, plus Switzerland.

How is EBIS funded?

EBIS is funded by a combination of membership fees, conference fees, research and related contracts, and donations from commercial organisations (e.g. pharmaceutical companies) and individuals.

EBIS is not a large organisation, so maintaining an income stream has been a major challenge from the very beginning and continues to be a challenge. We have had to be very cost effective; for example, most of our committee meetings now take place by telephone conference, a process instituted by our current president, whereas previously, we used face-to-face meetings, usually in Brussels.

30 BRAIN INJURY PROFESSIONAL

What are the top topics, areas of concerns for brain injury service providers in Europe? And how does EBIS address those areas or concerns?

We suspect that our concerns are the same as those of providers elsewhere. Maintaining funding and maintaining quality services are enduring issues, whether the provider is in the public or independent sector. All services are aware of the need to be financially responsible, often in the context of diminishing budgets, while trying to maintain current services and develop new services according to the needs of our clients.

EBIS is heavily involved here by means of the promotion of an annual multilingual European conference on topics that often have a very practical emphasis; for example, identifying best practice solutions in late community-based rehabilitation and management. In addition, we have promoted and supported unilingual meetings and workshops dealing with issues raised by either providers or clients. EBIS provides a network, both formal (via the website) and informal (via its members).

In addition, EBIS participates in research programmes such as the International QOLIBRI Task Force on TBI Quality of Life, chaired by J.L. Truelle.

As the world becomes smaller through technology, and as similar groups share knowledge, what do you see as the potential collaborations between EBIS and groups like the North American Brain Injury Society (NABIS)?

In principle, EBIS welcomes collaboration and the ability to exchange information, ideas, and techniques. EBIS has always been keen to identify and promote new initiatives; for example, the need to have clear quality standards. In addition, the Internet has made it much easier to link different organisations by means of links in websites and similar methods.

EBIS continues to increase its contacts and collaborators by joint meetings with other societies devoted to traumatic brain injury (TBI) such as the Euroacademy for Multidisciplinary Neurotraumatology (EMN).

RaRe DeDication.

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Craig Hospital in Denver is

exclusively dedicated to specialty rehabilitation and research for persons with spinal cord injury and traumatic brain injury. Craig is committed to helping rebuild lives following catastrophic injury — and to unsurpassed clinical outcomes, patient and family satisfaction, and financial value for the insurance industry and society.

As an international leader in the field, Craig consistently serves more than 1,700 inpatients and outpatients from 47 to 50 states each year. Craig is federally designated by NIDRR as a Model Systems Center for SCI and TBI, and is the NIDRR TBI National Data and Statistical Center.

Craig has been ranked in the Top 10 Rehab Hospitals since the rankings began in 1990, and is one of only a few Magnet® Recognized rehabilitation hospitals in the U.S. The success of our patients is due to Craig’s focused expertise and resources, remarkable

longevity of staff and physicians, large patient milieu, family services and on-site housing, financial stability and an upbeat culture of contagious caring and compassion.

As a non-profit, independent hospital governed by a volunteer board of directors, the Craig “family” is dedicated to delivering the highest quality of rehabilitation treatment available anywhere.

Ask anyone who has ever been associated with Craig Hospital and you’ll receive a consistent answer: Craig is a very special place. We look forward to serving you.

Craig Hospital Caring exclusively for patients with spinal cord and brain injuries.

3425 South Clarkson Street | Englewood, Colorado 80113 |

www.craighospital.org

BRAIN INJURY PROFESSIONAL

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non-profit news NORTH AMERICAN BRAIN INJURY SOCIETY

As this issue of BIP goes to press, the North American Brain Injury Society is putting the finishing touches on its 7th Annual Conference on Brain Injury and the concurrent event, the 22nd Annual Conference on Legal Issues in Brain Injury, which will take place in Austin, Texas, October 14-17, 2009. A highlight of this year’s meeting will be a pre-conference symposium on Pediatric ABI supported by Lash and Associates Publishing/Training and the Sarah Jane Brain Project. NABIS thanks conference chair Harvey E. Jacobs, PhD and the NABIS scientific planning committee, who put together an exceptional program featuring an outstanding faculty of internationally recognized speakers, as well as several new features including an evening “meet the experts” session and special panels covering Blast Injury, State/National Trends and Issues Impacting Brain Injury Care, and Emotional Perception. Accepted abstracts will be published in a special issue of the Journal of Head Trauma Rehabilitation.

Looking ahead, NABIS is excited to announce two important meetings scheduled for next year. First, in partnership with the Alaska Brain Injury Network, we’ll be organizing the Alaska Brain Injury Conference in Anchorage in the Fall. This event will not only address the common challenges presented by brain injury rehabilitation and treatment, but will also cover issues specific to Alaska populations. Later in year, NABIS is pleased to be joining forces with the National Association of State Head Injury Administrators (NASHIA) to hold a joint meeting, which is scheduled to take place in Minneapolis/St. Paul. A joint scientific committee is already at work putting together a program that will draw on the strengths of each organization. More information will soon be available in the NABIS site, www.nabis.org.

NATIONAL ASSOCIATION OF STATE HEAD INJURY ADMINISTRATORS

The National Association of State Head Injury Administrators is busy putting the final touches on the 20th Annual States of the States (SOS) Conference, being held at the Eldorado Hotel in Santa Fe, New Mexico in October 2009. This year’s conference, “Thinking Differently in the City Different…Brain Injury Innovation and Promising Practices”, promises to be one of the most educational and informative events yet. NASHIA has again secured a variety of impressive speakers and panelists from across the country to present, highlighting alternative therapeutic approaches, supported employment, substance abuse, waiver issues, public policy, state capacity building for student services, cognitive rehabilitation, and innovation in identification and assessment, with updates from national brain injury programs. The pre-conference intensive, facilitated by NABIS Executive Vice-President and Editor in Chief Ron Savage, focuses on linking brain injury research with policy and practice, and features information from the TBI Model Systems, NABIS, BIAA, CDC, NDRN, SAMHSA, VA and DOD. The NASHIA SOS Conference also offers an opportunity for programs, service providers and other stakeholders to sponsor a variety of events, advertise or exhibit to peers and attendees.

Please consider supporting NASHIA in this way by contacting

32 BRAIN INJURY PROFESSIONAL

Jeff Henderson at jphenderson@nashia.org or by visiting our website for additional information at www.nashia.org .

NASHIA is the first and remains the only forum addressing State government’s significant role in brain injury. NASHIA encourages and facilitates communication among state programs in order to share successes, replicate beneficial programs and services and maximize options for individuals with brain injuries and their families. Seventeen states have recently been awarded four-year grant funding through the HRSA Federal TBI Program, allowing them to focus on creating and enhancing comprehensive, multidisciplinary, and accessible systems of care. Additional funds will allow four more states to be awarded in the near future.

The NASHIA Public Policy Committee, with Susan Vaughn, Director of Public Policy, and Jean Berube, Governmental Relations, has supported a number of issues including the CLASS Act, health reform that includes long-term care, and increased funding for TBI Act and NIDRR TBI Programs.

NASHIA serves on the Centers for Medicare and Medicaid Services (CMS) Working Group, providing input for HCBS 1915c Medicaid Waiver Program administration. NASHIA will also serve on a State legislative panel at the 25th Annual HCBS Waiver Conference, sponsored by the National Association of State Units on Aging in Sept. in Denver, CO. NASHIA has a presence on the National HCBS Quality Enterprise website containing pertinent materials, official forms and policy for Medicaid 1915c Waiver programs. States may use this website to request no-cost technical assistance or post questions to their peers in other States.

NASHIA and NABIS are joining forces for the 2010 conference. Bringing together clinical perspectives, public policy and state interests, both organizations are gearing up for a training collaborative you won’t want to miss! More details will be coming soon on the NASHIA website.

INTERNATIONAL BRAIN INJURY ASSOCIATION

Plans continue to progress for the 8th World Congress of the International Brain Injury Association to be held March 10–14, 2010 in Washington, D.C. The final program is now posted on the IBIA website, www.internationalbrain.org, and includes an exciting array of pre-Congress, Congress and post Congress activities.

From a scientific standpoint, pre-Congress workshops include the Neuropsychiatry of TBI, Applications of transcranial magnetic stimulation and transcranial direct current stimulation, Advances in assistive technology for cognition, and Constraint induced therapy. Our post-Congress symposia include Effort testing, Family issues, Blast injuries, Pediatric brain injury, Neurobehavioral challenges following TBI, as well as, TBI vocational rehabilitation.

Our Congress sessions will bring together some of the top international scientists, clinicians and researchers working in the field of brain injury to provide attendees with cutting edge information, reviews of controversial topics in brain injury di-

agnosis and care. Attendees will learn clinically practical information that they can translate to real world applications to create better patient outcomes and improve their brain injury systems of care.

We have a number of other exciting conference sessions planned for attendees including “Meet the Expert” sessions where attendees will have the opportunity to meet in small groups with the ten top international experts in the field of brain injury care.

We are expecting a wonderful turnout by exhibitors which will provide attendees an opportunity to gather information on new products germane to brain injury assessment and treatment, international treatment programs for brain injury, as well as, review and examine some of the latest scientific publications in the field of brain injury care and research.

Our social and entertainment agenda is also full for the conference with a number of wonderful tours of the international, diverse and historical city of Washington DC, social activities including our Congress Gala Dinner (with a few special surprises). IBIA awards will be given out at the Gala Dinner and include the Henry Stonnington award for best review articles for 2009 (1st and 2nd place), Car of the year award and the Young Investigator award (this will be the first time this award is given out by IBIA). Our awardees in 2010 for the Jennett and Plum Clinical Achievement Award are Professor Graham Teasdale and Professor Henry Stonnington, MD, the latter posthumously. For more information, visit www.internationalbrain.org.

Restore-Ragland

BRAIN INJURY ASSOCIATION OF AMERICA

Like a dog with a bone, BIAA is relentlessly pursuing access to high quality brain injury care! In partnership with our Business & Professional Council (www.braininjurycouncil.org), we are lobbying hard to include rehabilitation, eliminate the Medicare waiting period and raise insurance caps as part of health care reform. We are working to expand cognitive rehabilitation coverage for TRICARE beneficiaries and increase funding for TBI Act programs and the TBI Model Systems. BIAA’s Academy of Certified Brain Injury Specialists (www.acbis.pro) has grown to 4,500 members. Technology upgrades will fully automate the application, testing and grading processes by early 2010.

This fall, our main web site, www.biausa.org., will get a full makeover, but BIAA’s National Directory of Brain Injury Service Providers is already online and offers a searchable database of facilities, professionals, state agencies, and support groups.

Kathy Stachowski, OTR/L, and Pam Kaneshige, OTR/L, will present the next David Strauss Memorial Lecture on Nov. 18, 2009 on Vocational Implications of TBI. Gary Seale, MS, will present the next Caregivers webinar on aging with a brain injury on Dec. 8, 2009. BIAA will host the Brain Injury Business College, Feb. 22-24, 2010, at The Menger Hotel in San Antonio and the 2010 Litigation Strategies Conference, Apr. 29-30, at The Signature at MGM Grand Hotel in Las Vegas. BIAA needs support from the professional community for its advocacy and education activities. Please consider making a taxdeductible donation, becoming a corporate sponsor or joining the Business & Professional Council.

Restore-Roswell

Restore-Lilburn

Restore Neurobehavioral Center is a residential, post acute healthcare organization dedicated exclusively to serving adults with acquired brain injury who also present with moderate to severe behavioral problems.

Services range from intensive inpatient neuro-rehabilitation and transitional community re-entry services to long term supported living services. Restore Neurobehavioral Center, located in a suburb north of Atlanta, is the site of our inpatient post acute neuro-rehabilitation program as well as one of our supported living sites. We operate two other community living sites, Restore-Lilburn (GA) and Restore-Ragland (AL).

www.restorehealthgroup.com 800-437-7972 ext 8251 BRAIN INJURY PROFESSIONAL

33

legislative round-up Susan L. Vaughn, Editor, Legislative Issues “Only those who dare to fail greatly can ever achieve greatly.”

Robert Kennedy As Congress failed to pass all twelve Fiscal Year (FY) 2010 spending bills for federal agencies prior to October 1, the start of the federal fiscal year, Congress is passing an omnibus spending bill to continuing funding programs for at least one month. This includes appropriations for the Departments of Labor, Health and Human Services (HHS), Education.

Several programs received increases in the House approved budget. The House recommended $10 million for FY 2010 for the federal Traumatic Brain Injury (TBI) Program administered by the Department of HHS, Health Resources and Services Administration (HRSA), which is $123,000 more than FY 2009. The Senate Appropriations Committee recommended slightly less than that, $9.877 million, which is the same as FY 2009. The House also recommended an increase in the TBI program administered by Centers for Disease Control and Prevention.

The House recommended $3 million above the FY 2009 level for the National Institute on Disability and Rehabilitation Research. The House included language to encourage the Administration to establish an Interagency Committee on Disability Research to develop a comprehensive government-wide strategic plan for disability and rehabilitation research, including capacity building and knowledge translation.

The Brain Injury Association of America and the Wounded Warriors Project were successful in attaching an amendment to the Senate Defense appropriations bill directing the Department of Defense to carry out a pilot program under the TRICARE program to determine the feasibility of expanding cognitive rehabilitative therapy services for members or former members of the Armed Forces. The House included an amendment commending the Army National Guard in establishing a blast tracking system, and urged other branches to do the same, in order to document blast exposure in the event of a resulting TBI. Some disability and health care programs that received funding from the American Recovery and Reinvestment Act of 2009 (stimulus bill) did not receive significant increases for FY 2010.

The stimulus bill, which was signed into law by President Obama on February 17, 2009, contained $878 billion of which a sizable portion is available to states to prevent cuts to health and human services programs.

Since March 11, HHS has distributed $3 billion in Recovery Act funds to support a variety of policies and programs including 34 BRAIN INJURY PROFESSIONAL

Community Health Centers and Medicaid. To see how states are using these funds go to http://www.hhs.gov/recovery/. The Department of Education also has a website to provide an update as to how states are using funding for low-income schools, special education, education technology grants, vocational rehabilitation, independent living services, homeless children assistance, low-income college students and work study: http://www. ed.gov/policy/gen/leg/recovery/index.html.

In September, the Senate Finance Committee introduced the “America’s Health Futures Act”, the health care reform bill, and the committee began markup. The bill includes a prohibition of pre-existing conditions and discrimination based on health status, annual and lifetime caps; expansion of Medicaid; and requirement for data collection on disability-related health disparities. Of concern to the disability community is that the benefits package does not specifically include rehabilitation and habilitation services and durable medical equipment (DME). Disability advocates continue to advocate for the inclusion of the Community Choice option, which would give the states an option to provide a wide range of community-based services to people who would otherwise qualify for institutional level of care. Advocates are also encouraging the inclusion of the Class Act, which establishes a national insurance program financed by voluntary payroll deductions and would allow adults who become functionally impaired to purchase community living assistance services and supports.

Senator Tom Harkin (D-IA) has replaced the late Sen. Ted Kennedy as Chairman of the Senate Health, Education, Labor and Pensions (HELP) Committee. Sen. Kennedy was a champion for Americans with disabilities. During his tenure, he authored more than 2,500 bills with several hundred of those becoming Public Law. These laws include the Traumatic Brain Injury Act of 1996 and the 2000 Amendments and 2008 Reauthorization; the Mental Health Parity and Addictions Act; the Workforce Investment Act; the Americans with Disabilities Act; the Crime Victims and Disabilities Awareness Act; the Developmental Disabilities and Bill of Rights Act; the Job Training Partnership Act; Employment Opportunities for Disabled Americans Act; the Ticket to Work and Work Incentives Improvement Act; Assistive Technology Act; the Education for All Handicapped Children Act of 1975, which later became the Individuals with Disabilities Education Act (IDEA); and the Family Opportunity Act that provides states the option of allowing families of children with disabilities to purchase health.

Senator Kennedy certainly dreamed large. As the result of his vision, tenacity and grit, his legislative achievements resulted in a better life for many Americans. His shoes will be hard to fill. But, with the work of all of us, legislation and policies can be enacted to improve the lives of individuals with brain injury.

ABOUT THE EDITOR:

Susan L. Vaughn of S.L. Vaughn & Associates, consults with states on service delivery and serves as the Director of Public Policy for the National Association of State Head Injury Administrators. Ms. Vaughn retired from the State of Missouri after nearly 30 years, where she served as the first director of the Missouri Head Injury Advisory Council. She founded NASHIA in 1990, and served as its first president.

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