Supporting Your Loved One With a Disability – Dos and Don’ts

What supporting somebody with a disability can be like

Somebody who is assisting someone with a mental or physical disability to complete activities of daily living, such as accessing the community, completing household tasks like cooking or gardening, assisting with personal care activities like washing, dressing, or eating, then they is considered a carer for that person. Often, these tasks will exceed about 40 hours per week. A lot of Australians are currently acting as carers – about 11% of the population have reported that they provide service to someone in this way. Many obstacles stand in the way of receiving adequate carers’ payment for these activities, and many Australians are acting as carers for members of their close or extended family. Often, carers are fulfilling these caring tasks in addition to holding down paid employment.

Living with a disability proves tough for many Australians due to innumerable barriers in aspects like funding, access to education or vocation, physical and mental health complications, and social exclusion. The weight of this is often shared by carers, who may experience carers’ burnout at some point in their caring journey. Taking on an informal caring approach can be taxing for all these reasons, and sometimes, the mental health of the carer and the person receiving care can suffer. By learning about tangible ways, you can carefully and compassionately care for someone with a disability, and some of this can be alleviated. This allows the carers/support workers and the person receiving care to feel seen and heard.

Dos and dont’s when supporting your loved one with a disability

Dos

1. Be kind with questioning

You may have a lot of questions about somebody’s needs, experience, or limitations when supporting them with a disability. Be sensitive and value privacy when asking about specific care needs; make sure these conversations happen in private areas, and you are using sensitive language when discussing personal care needs.

2. Offer help

Offering your help or assistance to someone instead of assuming when they need help is the way to go. They are the best expert in what they need help with and what they would rather do independently – so offering your assistance instead of immediately providing it is key.

3. Use inclusive language

New standards for how we communicate someone’s disability or needs include using person-centred language, i.e, “person who uses a wheelchair” instead of “wheelchair bound” and “a person with a diagnosis of schizophrenia” instead of “schizophrenic person.”

 4. Foster independence

Allowing your loved one to decide what they want to do independently and respecting that autonomy is key for the carer and the person receiving support to feel respected.

5. Reach out for help

If you find caring for or supporting someone with a disability is taking a toll on your emotional or physical health, reach out for help. This can be informal, like scheduling time in your week to do something that brings you joy, or formal debriefing like with a psychologist. Asking healthcare professionals for resources on how to manage stress can also be invaluable, as is researching ways to access funding for supporting your loved one, like the carers’ pension, or finding NDIS funding for your loved one.

6. Communicate with schools

If your loved one is in formal education, communicating with schools about their specific care needs will make your loved one’s experience at school easier and will take the stress off you. This may be speaking with their direct classroom teacher, or their school may have a disability advocate available to discuss care needs with.

7. Prioritise accessibility

When accessing the community, prioritising venues and spaces that are accessible is important. This may mean finding physically accessible venues – if they use mobility aids – or spaces that are set up in a way that reduces triggering events or stimuli if they have a disability that makes them sensitive to those types of sensory events. This will make the person you are supporting feel respected and valued and will mitigate the stress of an accessibility barrier popping up.

8. Communicate with Respect

If you are supporting someone you live with or a member of your family, the additional stressors of managing day-to-day life and a household can take a toll on your emotional well-being. It is super important to manage your own emotional reactions to stress and consistently communicate with respect. This goes for all relationships in life but is very important when supporting people with a disability who are at higher risk of being involved in emotionally or physically abusive familial and non-familial relationships.

9. Communicate directly

There is a saying in healthcare and caring that goes, “nothing about me without me.” This means you are always communicating directly with the person about their needs and wishes instead of making decisions without their input. It’s important to always include your loved one in decision-making about their care if they have the capacity to be so.

10. Celebrate the person

For people living with disability, it can feel like their life or identity has become focused on their disability and limitations rather than their passions and what they are capable of. Finding things they find joyful or meaningfully challenging and fostering their development and participation in these things is super important. For anyone to feel like they are living a meaningful life, purpose and passion are two paramount experiences to be had. Make sure the person you are supporting feels valued as the whole person that they are in your conversations, interactions, and care.

Dont’s

1. Don’t assume

When supporting someone with a disability, don’t assume what they are or aren’t capable of or what their wishes are about their care. Make sure you are consistently checking in empathetically with what they need help with on the day-to-day.

2. Don’t avoid hard topics

When helping plan someone’s care or figure out the best way to support someone, sometimes it may feel awkward or difficult to navigate those conversations, for instance, what someone may want for their care or life if they lose the capacity to make decisions themselves. Don’t avoid these conversations – being upfront and using tact and empathy is the best way forward.

3. Don’t speak on their behalf

When interacting with other people who may need to support or care for your loved one – i.e., in the hospital or at school, try not to speak on behalf of them if they are capable of communicating their needs independently, especially if they are an adult.

4. Don’t centre the disability

When supporting someone with complex care needs, it can feel difficult not to have all their care needs prioritised in their life. For young people especially, try to foster their skills, hobbies and passions outside of who they are with their disability.

5. Don’t isolate

For those supporting people with disabilities in facilities such as schools, it’s important to create an inclusive environment. Make sure classroom activities and extracurriculars are inclusive of diverse needs and that school-aged children are educated about the importance of celebrating diversity.

6. Don’t use derogatory language

This seems self-explanatory, but keep up to date with what is respectful when it comes to speaking to and about people with disabilities. There are a number of phrases and words that may have been acceptable a decade ago, but the social landscape is rapidly changing to make sure people with disabilities aren’t subject to ableist language and slurs.

7. Don’t use patronising body language

Unfortunately, when it comes to older adults who are experiencing cognitive decline or disability, people involved in their care can inadvertently infantilise an adult. Make sure your body language and how you interact with someone with care needs to respect their experiences and maturity, such as speaking with them at eye level.

8. Don’t ask intrusive questions

While it is important to know the best way to support someone and their care needs, be respectful in the questions you ask them. People with disabilities are often subject to questions about intimate parts of their body or aspects of personal care, which able-bodied people are often not.

9. Don’t move around important aids

People with disabilities who use aids to assist with things like movement, reading, or personal care usually have good routines in place including these aids for their day-to-day living. Don’t move around these important aids to where they may be out of reach or not able to be found.

10. Don’t use spaces designated for people with disabilities

Being a good supporter or carer means being a good advocate for all those with disabilities, too, and that means setting examples of the appropriate use of accessible areas in public. Don’t use disabled bathrooms, seats, or driving spots if they’re not appropriate for you.

How Homage can help

Homage can help with all kinds of care needs

Homage helps you choose a dedicated support worker to help people living with disabilities access the care that they need, in the home and outside the home. Support workers are available using the capacity-building stream of NDIS funding. They can support someone experiencing disabilities in numerous ways to build skills and capacity, such as teaching a young person a particular skill or hobby, working on social skills and accessing the community, teaching them how to utilise public transport or build workforce skills, or simply accompanying them to their community groups or activities. Support workers are also available to help support someone with a disability with home-based activities, like tasks around the home and personal care activities.

Accessing the community

Support workers can also be utilised to accompany someone with a disability to access community events. This may be used as companionship or emotional support during an outing and assisting a person with a disability in learning how to navigate the aspects of accessing community groups. You can also access support workers if you need physical assistance with accessing the community for anything from grocery shopping to attending a music gig. This may be the case if someone with a disability needs assistance with personal care needs on an outing or needs assistance physically partaking in an activity. Utilising the support workers to assist you to engage in community activities and create connections can be invaluable.