The challenge of equipment selection for disabled clients
Introduction
If you work in rehabilitation, the following story probably sounds familiar. Persons with a disability such as a spinal cord injury often find they acquire a lot of specialist equipment over a period of time and some of it ends up unused, unloved and unwanted. Whenever this occurs, it is an undesirable situation that wastes time and money.
As assistive and therapy technology providers, we want delighted clients at Anatomical Concepts. We follow the ethical code of the BHTA. We want every product we offer to be chosen appropriately and used by clients so they get maximum benefit. This is not a business where we can aim to persuade people to purchase our products. There are, in effect, no perfect products - they cannot be judged in isolation from the individual use cases. The purchasing process in our sector needs to be consultative and less transactional.
The Clothes Horse Problem
For example, I have been in many homes where a wooden standing frame acts as an unwanted "clothes horse" taking up a good proportion of a living room. Even though most persons would be encouraged to stand frequently by their medical professionals following a spinal cord injury, the frame is often never used as intended. It could be for several reasons. Perhaps the equipment is too big for the room, it was not set up correctly, or it was not suitable for the individual. The client may not even understand why using it would be a good idea. Being bored using it is not going to lead to effective use.
Claire Lomas is a regular RehaMove FES Cycling system user
For decades, we have worked with FES Cycling equipment, often used by clients with a spinal cord injury to help maintain fitness. I remember worrying at the beginning of this effort whether clients would spend all this money but not use the equipment. After all, many people who pay for gym subscriptions don't get their money's worth. Motivation doesn't tend to last unless people stick to something long enough for a habit to be formed. Some of our RehaMove system users are enthusiastic and frequent users, while others are infrequent adopters. Lifestyle and motivation are always going to be issues. As rehabilitation focuses more and more on functional recovery we find that clients are more willing to train with this equipment now as they understand that they need to be fit to take advantage of advances in medical science. Motivations shift over time.
Users are not all the same - they have different abilities and goals
The Tek RMD is another product where we must take the time to recognise if it fits the client's expectations and wishes. The Tek RMD was designed to allow clients with lower limb paralysis to stand with a good posture (therapists generally love it) and then move around in their environment in a standing position. Many people think of the product as primarily a mobility device, and it certainly does move, but I think of it as a therapeutic standing device that also happens to allow movement. That's a big difference in emphasis.
As we mentioned above, persons are encouraged to stand using a standing frame following a spinal cord injury but many don't continue to do this if this is all they can do. Just standing for 40 minutes is not appealing if nothing else can occur at the same time. The Tek RMD allowed standing to take place whilst carrying out other activities. Clients can also use the product outdoors.
The Tek RMD in indoor and outdoor trim
However, this product, like all others has limitations. If you want to travel over rough terrain for many miles then perhaps this would be a bad choice. "Standing" wheelchairs that allow for occasional standing may not offer the same therapeutic advantages as the Tek RMD but some individuals might prefer this if they gain benefits that they value more.
Clients lucky enough to have a good Case Manager can sometimes avoid these problems. Of course, Case Managers are connected to many equipment providers and can act as honest brokers. But they will likely find it challenging to keep in touch with new developments. However, in my view, it is just as important that they can offer a sense of priorities and help their clients with realistic goal setting.
We could arrogantly suggest that it should be easy for clients to know what they want, but in my experience, stepping back from our problems and getting another person's perspective on things can help clarify things.
Rational Decision Making
So how should someone with a disability establish a process to ensure their purchased equipment meets their needs? Many decision-making approaches could be used, but I will sketch two approaches.
The first is a generic approach that analyses the assumptions that are preconditions for success. Imagine we are looking through a particular lens to analyse the issue from one perspective. I'm sure for a particular class of product there are other points that we could raise.
Assumption Based Lens
Medical Necessity Evaluation
Consultation with healthcare professionals to determine medical requirements
Evidence-based assessment of the equipment’s effectiveness for the intended medical or rehabilitative purpose
Something that is a medical necessity is likely the top priority but not all healthcare professionals will know all equipment and its benefits and features. People talk a great deal about the need for evidence of effectiveness but a lot of equipment should be viewed just as a tool to do a job which it will achieve with a particular level of efficiency.
Lifestyle Compatibility Assessment
Identification of the individual’s daily routines and activities
Assessment of equipment’s alignment with personal lifestyle and goals
Inclusion of family and caregiver perspectives regarding everyday usage
For assistive technology, these perspectives are critical in my view.
Usability and Accessibility Analysis
Evaluation of the equipment’s ease of use for the individual’s specific capabilities
Assessing equipment’s adaptability for various environments where it will be used.
Ensuring availability and accessibility of maintenance and support for the equipment.
Usability is important. Equipment in this field is generally customised to match the individual's requirements. Trying the equipment at home is valuable in many cases as it establishes the fit with the home environment. The equipment's expected life and the support and maintenance processes should be considered.
Cost-Benefit Analysis
Analysis of equipment cost relative to the benefits and potential improvement in quality of life.
Consideration of insurance coverage and funding sources for equipment purchase.
Cost-benefit suggests some calculation can be performed. However, whilst costs can be easily established there will always be an emotional component to identifying the benefit.
Adaptive Flexibility Assessment
Assessment of the equipment’s ability to adjust to changing needs over time
Ensuring the equipment can be used in conjunction with other devices or technologies the individual requires
This is an important area in many cases. For example, can the equipment be adjusted to suit the needs of a growing child? Are there facilities to support easy transfers in and out of that wheelchair?
Risk Assessment Lens
Here is a second lens that it taking a risk assessment approach. We are trying to identify key risks and then suggest basic mitigation strategies with this lens. I'm thinking of 5 levels as follows:
Level 1: Initial Assessment and Research
Risk: Inadequate Needs Assessment
Without a thorough understanding of personal needs and goals, individuals may acquire ineffectual or unnecessary equipment, wasting resources.
Mitigation: Comprehensive Personal Evaluation
A detailed assessment by healthcare professionals, including physiotherapists and occupational therapists, can identify the precise needs and recommend potentially appropriate equipment.
Risk: Insufficient Research
Purchasing equipment without proper research can lead to acquiring substandard or irrelevant tools.
Mitigation: In-depth Product Research and Comparison
Conducting extensive research, reading reviews, and comparing products can ensure that the equipment is suitable for the intended use and is of high quality.
Level 2: Funding and Acquisition
Risk: Financial Strain
Specialised equipment can be expensive, leading some individuals to financial difficulties if not managed properly.
Mitigation: Exploring Funding and Assistance Programs
For those without insurance or other funds, investigating insurance coverage, grants, and community programs can provide financial support to purchase necessary equipment.
Risk: Vendor Reliability Issues
Engaging with unreliable or inexperienced vendors can result in receiving inadequate equipment and or service.
Mitigation: Selecting Reputable Suppliers
Choosing vendors with good reputations and proven track records can ensure that the equipment is reliable and the purchase is secure.
Level 3: Equipment Trial and Customisation
Risk: Equipment Mismatch and Non-use
Equipment that does not fit the user's needs or their normal home environment may go unused or cause harm.
Mitigation: Trial Periods and Customisation
Utilising trial periods if possible for equipment and seeking customisation can ensure a better fit and usability.
Risk: Insufficient Training to Use Equipment
Lack of proper training can result in improper use of the equipment, reducing its effectiveness and possibly leading to injury. Where a care team is working with the client they need to be trained.
Mitigation: Adequate Training and Support
Ensuring that sufficient training is provided and setting up ongoing support can help users to utilise the equipment effectively.
Level 4: Maintenance and Follow-up
Risk: Equipment Deterioration and Malfunction
Failure to maintain the equipment can result in its deterioration or malfunction, impacting its usability and safety.
Mitigation: Regular Maintenance and Check-ups
Implementing a routine maintenance schedule when necessary and performing regular check-ups can keep the equipment in good working condition and extend its lifespan.
Risk: Changing Needs Over Time
As individuals' conditions evolve, previously acquired equipment may no longer meet the client's needs.
Mitigation: Periodic Reassessment of Needs
Regular reassessments by healthcare professionals can ensure that individuals continue to have the equipment that meets their current needs.
Level 5: Community and Peer Network Support
Risk: Isolation and Lack of Community Support
Isolation from peer networks can limit access to shared knowledge and experiences regarding equipment use. Beware of opinions from individuals who have never used equipment or in some other way unqualified observers.
Mitigation: Engagement in Disability Communities
Actively participating in disability support groups and online communities can provide valuable insights and shared experiences about equipment effectiveness.
Risk: Resistance to Adaptation and Learning
Reluctance to adapt to new equipment or to embrace learning can hinder the optimal use of adaptive technologies.
Mitigation: Ongoing Education and Encouragement
Continuous educational opportunities and encouragement can help individuals remain open to adapting and learning to use new equipment effectively.
Again, I'm not saying that these are the only approaches or that the points raised are exhaustive. I'm thinking generically here and would add or remove points when dealing with a particular case. But even just using these lenses to prompt thinking or discussion can help move planning forward. Some risks and mitigation strategies may be more applicable in certain situations than others, but it is important to consider all aspects to make an informed and effective decision when purchasing adaptive equipment. By taking a comprehensive approach that considers individual needs, cost-benefit analysis, risk assessment and other viewpoints, we should have the best chance of a great outcome for all concerned.
Summary
In summary, procuring equipment following a spinal cord injury or other disability requires a multifaceted approach to ensure the best possible outcome. One must consider an initial assessment and detailed research of personal needs to avoid acquiring ineffective equipment. It is crucial to involve healthcare professionals, family members, and caregivers in this decision-making process to ensure a holistic approach to identifying equipment that enhances the individual's quality of life. Factors such as reliability of vendors, potential financial strain and adequate funding are equally important. Furthermore, the equipment must be tried and customised to fit the individual's needs, and sufficient training should be provided to the user, and possibly their care team. The importance of regular maintenance and reevaluation of needs as conditions evolve is also highlighted. Lastly, community support and willingness to adapt to new technologies can significantly enhance the effectiveness of using adaptive equipment. This comprehensive method ensures that every aspect of obtaining and using adaptive equipment is considered, aiming to provide the most positive outcome for the individual.