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HomemifeatureMaking the Difference for Patients with Disability

Making the Difference for Patients with Disability

Around 18% of Australia’s population lives with disabilities that present challenges for learning, working, living independently and maintaining health.1 The spectrum of disability varies enormously, from mild to severe impairment, and it’s understood that people with cognitive disabilities are at higher risk of experiencing sight problems.

While it’s understandable that eye health may be overlooked when managing the myriad challenges that come with disability, this is an aspect of health care that should demand our full attention. After all, our vision is critical for communication, learning and movement. It co-ordinates our senses and helps us understand what we hear, touch, taste and smell in our environment.

mivision spoke to two optometrists from the Australian College of Optometry (ACO)– Dr Josephine Li and Mae Chong – about the rewards and challenges that come with providing eye health services to people with disabilities, and the skills that are acquired along the way. The ACO runs a dedicated eye care program for people with disability, including a visiting disability service to community residential units and day facilities, as well as a regular clinic at their Carlton site. The service is staffed by experienced optometrists, like Ms Chong and Dr Li, and provides services for patients who may struggle to find appropriate care in commercial practice due to their disability.

For Melbourne optometrist Mae Chong, working with people with a disability is a gift that both challenges and rewards her every day. Not that she was planning to work in this area. In fact, with a passion for paediatric eye health, she was undertaking her clinical residency at the ACO and was particularly enjoying working with children. Then one day, almost fifteen years ago, she found herself called into a clinic for people with disabilities.

“We needed cover for the clinic and as a paediatric optometrist, I was the most suitable person on duty. I enjoyed it, which isn’t surprising – it’s often paediatric optometrists who make the shift,” she told mivision.

The goal is to assess ocular health, while helping the patient maximise their quality of life and achieve their personal goals – whether that’s something as seemingly insignificant as independently getting a snack from the fridge…

Like working with children, working with people with a disability requires endless patience, good clinical skills with objective techniques and the ability to let things slide a little when you have to.

Now the Lead Optometrist Clinical Teaching and Manager of Low Vision Services at the ACO, Ms Chong says she has seen many students develop, then hone their skills as graduates. “I know that all optometrists can provide this important care, and I encourage them to try,” she says.

Right from the start, you need to allow extra time – time for the person to come into the consult room, time to position them comfortably which may require rearrangement of equipment, and time to get them relaxed in your presence. It may also take time for you to feel comfortable examining the person in front of you.

“It can feel awkward to ask a person to explain their disability. Yet this could be integral to meeting their needs – you need to know whether their disability affects their vision or use of their eye sight, and whether their eye sight impacts their ability to live with their disability,” Ms Chong said.

The goal is to assess ocular health, while helping the patient maximise their quality of life and achieve their personal goals – whether that’s something as seemingly insignificant as independently getting a snack from the fridge, moving around their home, enjoying a hobby or working in a job.

When it comes to the examination, Ms Chong says “patience is the golden key”.

“We need to relax into things – compromises may be necessary. Although we want to give every patient the best possible care, for some it simply isn’t possible to obtain accurate results from every test we undertake.

“For example, a full subjective refraction may not be possible, but retinoscopy and/ or autorefraction can provide an estimation that can be further refined with a spherical over-refraction. It’s about thinking outside the square to find work-arounds or alternative ways to obtain results.”

Importantly, she said it’s important to give things a try. “I’ve seen a patient who hadn’t had vision measured before because it was assumed that it would be impossible. With some effort and creative use of charts, we managed a crude measurement; resulting in a much better idea of how he was seeing. This provided another measure by which we could monitor his ocular health.

“When you get it right, it can be very obvious – the next time you see them the patient is wearing their glasses, their family reports they never take them off and they are distressed when they are removed to be cleaned. It’s a great feeling to know that you have impacted another person’s quality of life.”

We need to relax into things – compromises may be necessary. Although we want to give every patient the best possible care, for some it simply isn’t possible to obtain accurate results from every test we undertake

Of course there are some patients who won’t wear their glasses, even though objectively they must be making a difference – sometimes they are unable to adjust to the feel of the frame on their face. Contact lenses are not usually an option and surgery, which would typically require a general anaesthetic, can be traumatic for the patient and carer, and a challenge for the surgeon. However assumptions should never be made, and a patient’s disability alone should never be a reason to avoid ophthalmology referral. Disability can however, influence when and who these referrals are made to; for example some patients will be more comfortable in a smaller private practice, while some have ongoing general health care provided at a major public hospital and ophthalmology is best provided in that familiar space.

COMMUNICATION

It’s easy to assume there is a cognitive component to a physical disability, such as a spinal injury or cerebral palsy for example, but of course this isn’t typically the case.

While it may be appropriate to use simple language and express easy concepts to a person with cognitive disability, the same techniques used for a person who is cognitively aware are destined to offend and upset. Whether a person has a physical or cognitive disability, discussions are held within the triangle of patient, family/ carer and service provider. “I never talk over the patient or pretend they’re not there,” Ms Chong said.

“Whether the patient has a physical or cognitive disability, even if they require a carer in the room, I make sure to direct my conversation to the patient. If they have a cognitive disability, I take care to keep the language simple and clear,” she added.

MANAGING SEVERE DISABILITY

One in five (22%) Australians who are living with disabilities have a mental or behavioural disorder as their main disabling condition, and 6.3% of this group have intellectual or developmental disorders.1

Depending on their degree of disability, a person may live with family, in a share home with full time care, or independently with formalised visiting supervision.

Indeed, it is estimated that 39% of people with disability live in households that receive assistance from formal commercial or government service providers. Around 6,000 people aged under 65 live in permanent residential aged care due to their disability.1

Dr Josephine Li is the Manager of Community Eye Care Services at the ACO, leading a team of optometrists who visit share homes, aged-care facilities and homeless communities. She started her outreach work in 2008 and like Mae Chong, had been working in paediatrics.

When you get it right, it can be very obvious – the next time you see them the patient is wearing their glasses, their family reports they never take them off and they are distressed when they are removed…

“The people with disabilities I visit are those who can’t talk or have difficulty telling me what they really feel. It’s stimulating to work out what they need and a lot of this is done by observation and talking to the carers about what that person most enjoys doing, what they would like to do, or perhaps what they’re beginning to have difficulty doing.”

Armed with this information, Dr Li is able to determine whether the barrier to achieving their goal is vision-related, requiring vision correction (if tolerated), or perhaps a motor skill problem that a change in the environment will resolve. On a typical working day, Dr Li might visit two community residential units, each of which typically house five people. Or she may attend a nursing home where up to 30 people could be examined in one visit, working with another colleague from the ACO. The work can be demanding but also very rewarding.

On arrival at a home or facility, Dr Li always speaks to the carer first to ascertain the mood of each person she will see and any trigger words or actions that may upset or stress them.

“The questions we ask a carer are quite different to the questions we’d ask a patient with normal IQ. For example, we’d ask whether the patient sits really close to the TV or really far away; do they recognise faces; are they missing food on one side of the plate when they look at their food; are their eyes sticky when they wake up; and do they rub their eyes or poke their eyes – the answers to these questions provide valuable clues as to how we can meet the patient’s needs.

“The examination itself can be quite challenging, depending on the level of intellectual and/or physical disability.

“The carer will always introduce me and explain that I’m there to look into their eyes. We take time with each person, making them feel comfortable and ask permission to do everything. For instance, I’ll ask whether it’s OK for me to shine a light into their eye, and if I sense any reluctance, I will shine it elsewhere first. This is particularly important for a person with morbid disability, because you can’t risk upsetting them.

“Once we’ve done some objective testing, we’ll put dilation drops in to prepare for a dilated ocular fundus exam, then send them off to do the things they normally do around the house. That lets us observe them – how they walk around the house, whether they bump into things, whether they are able to manage eating a meal independently, etc.”

Whether the patient has a physical or cognitive disability, even if they require a carer in the room, I make sure to direct my conversation to the patient

Dr Li says speed is of the essence as is physical agility – an examination with torch light for instance, may scare a person who has no understanding of what you’re doing and in response they might try to flick your hand or push you away.

“In the end, our safety is the priority and so if I can’t perform an examination, and as long as there is no infection or ocular disease, I will document the fact that the examination could not be performed or completed so that we try again in six months’ time.

“There are times when I feel I haven’t been able to help the patient in any way because I haven’t been able to dilate them or shine a light into their eye. If a patient is very disabled and has low vision and I can’t do anything to help, in the end it comes down to making sure they’re comfortable. When you see a number of patients like this across a day it can be quite depressing.

“However, we are only able to prescribe glasses for about one in 100 patients, and this is where the rewards come into the job. We start by using a trial frame to see if it makes a difference and if it does, we’ll prescribe glasses and ask the carer to start the patient by wearing them for 15 minutes a day then build up over time as they become more comfortable with them. By three months, if they’ve accepted wearing their glasses, we’ll find they’re able to see and function a lot better,” Dr Li explained.

“It could mean, for example, a patient who is short-sighted can suddenly see things and start to make eye contact with people around them. They may be able to pursue the activity they enjoy doing. I’ve seen people who were quiet and withdrawn suddenly get up and start moving around the house more on their own. Their behaviour changes – they might help themselves to food and engage more with the people in the house. It doesn’t sound like a major change for people with able bodies and a normal IQ, but it can make a significant difference and that’s what we’re there to do – our objective is to help them achieve their goal by prescribing glasses or changing their environment.”

Examining for ocular infections is just as important as performing a refraction, especially for people at increased risk of eye infection. Dr Li explained that people with Downs’ Syndrome, for instance, are at high risk of blepharitis, which left untreated can lead to blindness.

I liken the provision of optometry care to putting together a puzzle. With disabled patients, it is a more challenging puzzle that requires all our skills and patience to assemble…

“They’ll be prescribed antibiotic drops but they won’t allow the carers to help administer them, so over time the infections worsen and then their cornea becomes infected and then scarred. It’s something I’m very aware of, so even if I can’t do an examination, I always check their lids for infection at minimum.”

EVOLVING OPTIONS

Dr Josephine Li

Ms Chong said the availability of NDIS has made a difference to the vision services that patients with disability can access – not because they have funding for vision correction per se, but because funding for other areas of their life has relieved them of financial burden. “So the fact that their motorised wheelchair is funded, means more of their own funds are freed up to pay for carers, other services or technology.”

Dr Li agrees. “We’ve also seen an evolution of technology – more portable equipment such as portable autorefractors and tonometry makes examining the eyes of a patient, particularly those with a physical disability, easier and less invasive.

“Technology has made a difference to the independence we’re able to provide to some patients. iPads with sign language apps for instance, enable a person who is unable to speak but has some cognitive ability, to point to pictures to communicate their needs. I find some patients are capable of using this technology but because of deteriorating vision, they can no longer see the pictures. By prescribing glasses, I can give them the ability to communicate with their carer so that their wants and needs can be better met.”

ENTER A NEW COMFORT ZONE

It can be difficult to get out of your comfort zone but Mae Chong and Dr Josephine Li agree that the skills optometrists have are so transferable that it’s just a matter of trying, learning and gaining more experience.

Mae Chong

Reflecting on her early days Ms Chong said, “I cared for a patient with a severe cognitive disability and I felt I hadn’t been able to assess anything useful. But after some reflection, examining other records and speaking with more experienced staff, I realised that I had managed to gather enough information to satisfy myself that the patient’s visual function had not changed, and their ocular health was stable. This experience gave me the confidence to continue providing care to this group.

“I liken the provision of optometry care to putting together a puzzle. With disabled patients, it is a more challenging puzzle that requires all our skills and patience to assemble; the results can be so rewarding for everyone.”

Dr Li’s advice to optometrists interested in providing care to people with disabilities is straightforward: “The more practice you have, the more you will be able to do to help these patient groups, and the greater the difference you will make.”

Reference 

1. People with disability in Australia: in brief. Australian Institute of Health and Welfare www.aihw.gov.au/reports/ disability/people-with-disability-in-australia-in-brief/ contents/acknowledgments 

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