Assistive Technologies and Rehabilitation - gurulo.hugurulo.hu/sites/default/files/dokumentum/jan_albers_epr_v2.pdfAssistive Technologies and Rehabilitation. ... (The US Assistive

- Challenges and Solutions -Jan Albers

senior consultant EPR

Merek - International Conference Budapest, 18 October 2011 1

Assistive Technologies and Assistive Technologies and RehabilitationRehabilitation

Structure

Background

EPR

Major challenges / developments

Approaches / solutions

2Jan Albers – Budapest 18 October 2011

Background

Dutch Study University Heidelberg Director Communication SRH Director VT Centre Hoensbroek CEO Hoensbroek (SRL / now Adelante) Co-founder EPR International activities (EU / RI a.o.)

3Jan Albers – Budapest, 18 October 2011

European Platform for Rehabilitation (EPR)

Network leading SP in Europe

Founded 1992

“learning, developing, producing together”

26 organisations // 15 countries

High quality medical / vocational rehab and social care

4Jan Albers, Budapest, 18 October 2011

Full members

Centro de Reabilitação Profissional de GaiaPortugal

National Learning NetworkIreland

AdelanteThe Netherlands

Fundación ONCESpain

RehabCareIreland

Josefs-GesellschaftGermany

Pluryn The Netherlands

DurapartNorway

Centre de Réadaptation de Mulhouse France

Luovi Vocational InstituteFinland

University Rehabilitation Institute (URI)Slovenia

HeliomareThe Netherlands

FretexNorway

A2GNorway

Stiftung Rehabilitation Heidelberg (SRH)Germany

5TBGLearning United Kingdom

Associate members

Theotokos FoundationGreece

Astangu Rehabilitation CentreEstonia

Association of Vocational Rehabilitation Entreprises (AVRE)Norway

National Organisations of Residential Homes and Special Schools (LOS) Denmark

Workshop "Panagia Eleousa" Greece

Valakupiai Rehabilitation Centre Lithuania

AIASItaly

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Berufsbildungswerk Neckargemünd Germany

CRISRomania

INTRASSpain

Paradigm shift in disability field

From medical model to social / consumer model

Paradigm shift in health and social services

From public programming regulation to market-based regulation

Elements of modernisationElements of modernisation

ModernisationModernisation

• Mainstreaming/partnership • Inclusion / maximise potential • Empowerment• Decentralization

• Demonstrate added value • Quality assurance• Competition: tendering• Market analysis and orientation

Positive & proactive approach High level expertise

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The limits and risks of AT

An assistive product

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A product that nobody wants

Jan Albers – Budapest, 18 October 2011

The limits and risks of AT

An assistive product

A need unexpected and not created


AT in 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.


Assistive Technology (AT) – Definition

Any item, piece of equipment or product system, whether acquired commercially, modified or customized, that is used to increase, maintain or improve functional 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)


AT and Telecare

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


AT and Ambient Assisted Living (housing / environment)

• (Semi)independent living elderly and pwd

• Security

• Communication

• Comfort / convenience

• Support

Avoid institutionalizing


AT – universal design

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.

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..(Perry J, Beyer S, Holm S. Assistive technology, telecare and people with intellectial disabilities: ethical considerations. J Med Ethics 2009;35:81-86.)


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


CSF 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


CSF 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


CSF 3: Expectations of the person and stigma associated to 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


CSF 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


CSF 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


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


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?


Ethics connected 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).

23Jan Albers – Budapest 2011

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.


The AT battle field

Source: Analysing and federating the European assistive technology ICT industry, Final Report, March 2009

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ASSISTIVE TECHNOLOGY

MARKETPROFESSIONAL & USER

ORGANISATIONS– Lobbyists– User organisations

FINANCING ORGANISATIONS

– Financing agencies (public and private)

– Social security systems– Insurance organisations

TECHNOLOGY-ORIENTED ORGANISATIONS

– R&D organisations (rehabilitation & technology-oriented)

– Universities– Standardisation organisations– Testing organisations

INDUSTRIAL ORGANISATIONS

– Manufacturers– Dealers– Wholesalers

INFORMATION, SERVICE & TRAINING

– Service delivery institutions– Institutional users

(rehabilitation centre, hospital, school etc.)

– End-users

GOVERNMENT & LEGAL ORGANISATIONS

– European Commission– Government at various

administrative levels: national, regional, county and municipal.

Core drivers and barriers for AT / ICT technology

• Core drivers – Knowledge of the disabled end-user– Knowledge of the diagnostician, (para)medical/technical professionals– 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 subsidizing/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).


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 Inclusion 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


Purchase of AT / ICT 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 decentralized 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).28


Future role of Rehabilitation SP in AT Participation in R&D Alliances with universities, research centers Cooperation with industry Involvement of own professionals in AT development Cooperation with mainstream organizations Empowerment of service users Training of service users

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AT is a challenge but even more an opportunity


Documents

Assistive Technologies and Rehabilitation - gurulo.hugurulo.hu/sites/default/files/dokumentum/jan_albers_epr_v2.pdfAssistive Technologies and Rehabilitation. ... (The US Assistive