Uplifting assistive technology

Regardless of age or level of functioning, people may need assistive devices to lead a satisfying life and remain involved in the community. A number of technologies offer assistance when it comes to hearing, speaking, transferring, eating, dressing, washing, toileting and other activities of daily living. Assistive devices can also compensate for other disabilities in a way that facilitates autonomy and an active social life. Which is not to say that there is a shortage of challenges. Assistive technology is a vast field, technological advances are breathtakingly fast, and many organisations are involved. Not to mention that devices are subject to complex regulations. The Swedish Assistive Device Commission appointed in 2015 had a broad task. Efforts to improve the situation are just now getting started.

In Sweden, one of the most controversial issues concerns fee and regulatory discrepancies from one part of the country to another. Disability advocacy groups, authorities, occupational and physical therapist organisation, etc., have long pointed to inequalities.

The National Board of Health and Welfare has determined that the fees for various devices, as well as the assortment of products offered, differ substantially both within and among counties, regions and municipalities. Orthopaedic devices, hearing aids, etc., are more likely to involve a fee. The devices that users must pay for themselves also vary.

One calculation shows that various user fees range from SEK 100 to SEK 1,700 depending on the county. The fee for double hearing aids ranges from SEK 80 to SEK 1,550.However, children with permanent disabilities are always entitled to assistive devices free of charge, regardless of where in Sweden they reside.

Another thorny issue has been public procurement. The challenge is to take advantage of technology without committing to expensive, uncertain and questionable solutions, including maintenance and support agreements.

The Swedish National Agency for Public Procurement, which has called for skills development among procurement officers, put together guidelines in 2017. Further, many have suggested that users should be more involved and be offered additional options if devices are to satisfy individual needs. Up to one-third of all prescribed assistive devices are reportedly unused.

According to a 2015 survey by the National Board of Health and Welfare, the main reason is that individuals may not have participated in either the assessment of their needs or the entire prescription process. Overall, people who report poor health participate less than others.

Given that effective devices may be essential for activities of daily living and that public costs are substantial, a lot is at stake when patients do not obtain that which suits their particular purpose. In 2015, Statistics Sweden found that the net cost for disability and assistive device services was SEK 5.6 billion at the county level alone. Municipal expenses were not included.

Most devices currently prescribed are for people age 65 or older. Considering that the proportion of Swedes in that age group is expected to increase by 30% from 2010 to 2050, many observers anticipate that the need will rise.

Meanwhile, new technologies will make it easier to offset a number of disabilities. Everyday objects are increasingly equipped with sensors, computers and Internet connections. These can network and share data, opening new possibilities.

Expectations are growing that future high-tech devices will provide and facilitate many healthcare and social services. Hope abounds that smart new devices will solve the growing problems associated with financing and staffing the healthcare and social service systems as the general population ages. The idea is to utilise digital technology to ensure that people can be more secure, active, involved and independent regardless of any disability they may have. Devices that can serve as reminders, warnings and guidance in the home might be particularly valuable.

Some smartphone and tablet apps contain functions that replace older products. For instance, personal digital assistants may offer cognitive support. The range of applications is always expanding.

One factor that contributes to the complexity of assistive device services is that responsibility is shared. The age of a potential user determines who should provide the device. Swedish municipalities, counties and regions are required to offer devices for care, treatment and activities of daily living as needed. Devices that enable people to work fall under the auspices of the Public Employment Office and Social Insurance Agency. Those associated with training and education are the joint purview of schools, universities and the healthcare system.

Many different types of practitioners are involved. Occupational, physical, speech, hearing and vision therapists, as well as nurses, can prescribe and assess the need for assistive devices. A referral from a physician may be required. The assessment is based on the impact of the disability on activities of daily living, along with the needs and wishes of the user and family. A team effort may be called for in order to distinguish between needs and wishes. Practitioners use various methods to assess need. The instruments vary depending on the disability, device and specialty of the practitioner. A distinction is sometimes made between life-sustaining, basic, daily and recreational needs. Professionals often lack knowledge about the reliability of the instruments and their role in ensuring that patients remain involved, perceive devices as appropriate and actually use them.

Patients, family members, practitioners and procurement officers may all have difficulty keeping track of the new devices that hit the market as technology roars ahead. Just one single category may include many versions and brands which may have a very short lifecycle. Finding the time to test and compare the various devices to make sure they are safe, effective and optimally beneficial can be a daunting task. Many manufacturers are small or medium-sized businesses without resources to conduct extensive clinical trials. Products, services and methods are often left to sink or swim on their own without reliable comparisons.

The field of assistive technology is vast. SBU contributes by reviewing trials and compiling evidence. Over the years, the agency has assessed a host of assistive technologies and devices. In 2017, SBU mapped current evidence on digital tools as a social stimulus for the elderly and their potential effects on psychological problems. This is a topic that begs the question of how to determine if and when people want technology to replace personal contact.

Evidence on the effects should be key when assessing need and prescribing devices. Increasing demand in ageing populations and rapid technological progress reinforce the need for unbiased information. Practitioners need to know which products are cost-effective. Further, assistive technology must be examined from an ethical point of view.

Inadequate knowledge could afflict the quality of life and level of functioning of large groups of people. The price may be high at both the individual and public level. [RL]

Categories of assistive devices

Among the purposes of assistive devices are to:

• compensate for the reduction or loss of physical and mental abilities
• retain or improve the level of functioning
• minimise disabling effects

Devices supplement other rehabilitation measures and may be broken down by capacity:

• Hearing – hearing aids, telephone devices, signalling systems, etc.
• Vision – DAISY players, Braille software, range lights, etc.
• Hygiene – catheters, incontinence pads, etc.
• Cognition, planning and memory – white-boards, clocks, etc.
• Communication – speech synthesizers, electrolarynxes, etc.
• Transferring – walkers, canes, wheelchairs, etc.
• Activities of daily living – toilet seat elevators, shower chairs, hospital beds, etc.
• Moving – wrist bandages, shoe inserts, artificial limbs, etc.
• Care and treatment – inhalers, ventilators, etc.

Habilitation and rehabilitation

Article 26 of the UN Convention on the Rights of Persons with Disabilities states that:

States Parties shall take effective and appropriate measures, including through peer support, to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life. To that end, States Parties shall organize, strengthen and extend comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health, employment, education and social services, in such a way that these services and programmes:

• Begin at the earliest possible stage, and are based on the multidisciplinary assessment of individual needs and strengths;
• Support participation and inclusion in the community and all aspects of society, are voluntary, and are available to persons with disabilities as close as possible to their own communities, including in rural areas.
• States Parties shall promote the development of initial and continuing training for professionals and staff working in habilitation and rehabilitation service.
• States Parties shall promote the availability, knowledge and use of assistive devices and technologies, designed for persons with disabilities, as they relate to habilitation and rehabilitation.