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Assisitive Technologies in rehabilitation services

Assisitive Technologies in rehabilitation services. Is the sky really the limit? Prague, 8 September 2011. Jan Spooren , Secretary General EPR. The limits and risks of AT. An assistive product A product that no one wants !. Modernisation of disability and social services sector.

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Assisitive Technologies in rehabilitation services

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  1. Assisitive Technologies in rehabilitation services Is the sky really the limit? Prague, 8 September 2011 Jan Spooren, Secretary General EPR

  2. The limits and risks of AT • Anassistiveproduct • A productthat no onewants!

  3. Modernisation of disability and social services sector Paradigm shift in health and social services From public programming regulation to market-based regulation Positive & proactive approach High level expertise Modernisation • Mainstreaming/partnership • Inclusion / maximise potential • Empowerment • Decentralization • Demonstrate added value • Quality assurance • Competition: tendering • Market analysis and orientation Paradigm shift in disability field From medical model to social model

  4. The limits and risks of AT • Anassistiveproduct • A neednotcreatedandunexpected

  5. Use of ATin rehabilitation – Preliminary remarks • Assumption: Disabled and elder people wish to lead independent lives in a familiar environment. • AT are not new and their use has never been uncontroversial. • Technological advances will considerably expand the areas in which AT are used. • Literature is critical of the technology-driven nature of AT development. • Care should be taken that AT supports communication.

  6. Assistive Technology (AT) – Definition Any item,piece of equipment or product system, whetheracquired commercially, modified or customized,that is used to increase, maintain or improvefunctional capabilities of individuals with disabilities. (The US Assistive Technology Act of 1998, Section 3) AT has the potential to help people with disabilities to live in the least restrictive environments and attain their personal and vocational aspirations. (Peterson DB, Murray GC. Ethics and assistive technology service provision. Disability and Rehabilitation: Assistive Technology 2006;1:59–67) 6

  7. ATand Telecare AT&T = the delivery ofhealth and social care to individuals within thehome or wider community outside formal institutionalsettings, with the support of devices enabledby information and communication technologies (Tang P, Curry R, Gann D. Telecare: new ideas for care and support @ home.Bristol: The Policy Press, 2000.) 7

  8. AT – universal design • Assistive technology which is not guided by the universal design concept may benefit people with disabilities but result in separate and stigmatising solutions, for example, a ramp that leads to a separate entry to a building from the main stairway. Universal design strives to be a broad-spectrum solution that helps everyone, not just people with disabilities and it recognises the importance of how things look. (Perry J, Beyer S, Holm S. Assistive technology, telecare and people with intellectial disabilities: ethical considerations. J Med Ethics 2009;35:81-86.)

  9. Experience of rehabilitation professionals • 75% of AT professionals believe that persons with disability do not receive the AT that they need Assistive product as a successful solution is very knowledge demanding and needs technical expertise of various domains

  10. CS 1: Knowledge about the products and their functionality • Risks • Too many and complex products • Different skills needed (communication, mobility, computer access, orientation) and continuous updating • “one-size fits all” mentality • Not sufficient evidence-based practice • Solutions • International and national professional network using electronic information resources • defining outcomes measure for the AP • documenting the AP service – product and service provided • educating/ involving the client in the evaluation of the AP

  11. CS 2: The assessment process • Multidisciplinary team and flexible and continuous • Person-centered approach • Task analysis (real-life scenarios) and site trials • Full participation of client • document the assessment • Education/ training of the team, including the client • Tremendous breadth of knowledge is required to service delivery of AT

  12. CS 3: Expectations of the person and stigma associated to the AT • Risks • high or low expectations • the AT says “she/he has a disability” • “what is good for him is good for me” mentality • AT as decision making is predominantly a trial and error process due to the “lack of a valid predictive model” to direct the selection of devices • Solutions • empower consumers by providing them with the information they need to make informed choices • involve the client in the initial process • role of family/ peers to value psychosocial health and quality of life

  13. CS 4: Need for an ongoing process • Risks • AT service as a PRODUCT • AT service does not finish with the AT product supply • time lapse between need and provision • Solutions • include within the AT service training and on-going training • follow-up actions and processes in place • (re)assessment is a continuous process

  14. CS 5: Sustainability and durability of AT • Risks • Studies show that up to 75% of AT devices are abandoned within 3 years • It may not always work as intended in every possible situation • It doesn’t “grow” with the client • It may break • It may encourage the consumers to rely on (imperfect) technology instead of developing their own skills • Families not accepting of technology. • Family members from varying cultures may have different perceptions of the need for technology. • Consumer or his/her family doesn’t want to “stand out” by using the technology. • School or workplace not accepting of technology. • Solutions • Awareness raising and information • Follow-up actions and processes in place • (re)assessment is a continuous process

  15. AT is a tool and not the goal or outcome on itself • is like a positive catalyst - it participates in the chemical reaction, speeds it up, but is not consumed by the reaction itself – it must be there but forgotten!) • Client skill and competency development • Maximum independence • Full participation in society

  16. Ethical questions related to AT • What forms of personal care and contact are abandoned with the use of AT? • What consequences arise when responsibility for the monitoring and quality of intervention is delegated to machines and informal carers? • Which services must be established or made accessible to ensure that patients receive integrated care and that technologies can be embedded in the domestic environment? • Which particular problems arise in terms of data protection? • What is necessary to ensure that all those in need have access to AT and that no one is disadvantaged? • What requirements does technological development need to meet from an ethical perspective?

  17. Ethicsconnected to relationships provider vs. user • Privacy:personal data protection! (Privacy Laws: personal/medical information of individuals). • AT: from non-invasive (without operation/intervention into the body) to invasive (operation: integrated circuits, pumps etc.: invasion in the integrity of human being). • Position: provider is in a superior position towards the user (inferior position). • Power: provider has power over the user (weakness). • Reliability: Providing regular and irregular services/repairs (for software and hardware).

  18. Ethical guideliness for the use of AT • Privacy: an individual shall be able to control access to his/her personal information and to protect his/her own space. • Autonomy: an individual has the right to decide how and to what purposes he/she is using technology. • Integrity and dignity: individuals shall be respected and technical solutions shall not violate their dignity as human beings. • Reliability: Technical solutions shall be sufficiently reliable for the purposes that they are being used for. Technology shall not threat user's physical or mental health. • E-inclusion: Services should be accessible to all user groups despite of their physical or mental deficiencies. • Benefit for the society: The society shall make use of the technology so that it increases the quality of life and does not cause harm to anyone.

  19. The variety of actors who participate – directly or indirectly – in the AT ICT industry Source: Analysing and federating the European assistive technology ICT industry, Final Report, March 2009

  20. Core drivers and barriers for AT ICT technology • Core drivers • Knowledge of the disabled end-user • Knowledge of the diagnostician, prescriptor of product solutions • Knowledge of the rules and procedures of different national service provider systems in Europe, but also reimbursement schemes • Flexibility in product design to be able to serve different geographical markets • Barriers • The lack of knowledge by the marketplace of the types of solutions available (i.e., not all possible AT ICT solutions are included in national service provider systems). • The cost and time needed to navigate the different national service provider systems in Europe in order to ensure compliance • The different interpretations of national service provider systems at the regional level (thereby fragmenting a national market into regional markets) • The lack of a coherent social policy for subsidising/reimbursing assistive technology products and the lack of coordination between the stakeholders involved. • High assistive technology ICT equipment prices (i.e., which result in lower overall sales volume).

  21. Industry as a key player for AT ICT technology • Interest shown by Industry still quite fragmented • Mainly restricted to specialised niches • Danger: Industry at risk of not recognising the people with disabilities and older people as target groups showing an interesting potential. • Major international industries developed accessible products due to the market demand generated by specific US regulations, and most such products are still available only in the US. • European signal (see eInclusion driven calls within FP6 and FP7 as first step), both large–players and small and medium size enterprises • Developing an appropriate EC legislative framework to stimulate the inclusive approach

  22. Purchase of AT ICTs by end user • The medical oriented model: • Starting point is the handicap where the physician initiates necessary procedures and must approve the need for listed and reimbursed AT based on medical arguments. • The social oriented model • Based upon national legislation and local and decentralised execution, and involves national/local agencies that coordinate the provision and funding of AT, often also after the person with disability is evaluated by a panel of medical experts (like in the medical oriented model) to define the degree of disability, and the access to subsidies. • The consumer oriented model: • The end-user has direct contact with a retailer in order to get his/her AT product (e.g. personal budget).

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