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Reviewing the NDIS: our take on the Productivity Commission price review.
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Have you ever considered how to increase the independence of your loved one?
There’s no question that caring for a person with a disability can be all consuming. Both physically and emotionally it can take its toll.
It can be hard to find the time and energy to work on greater independence, but it’s definitely worthwhile.
Often carers struggle with the idea of letting go. It can be hard to accept the unknowns involved in achieving a more independent lifestyle for a family member with an intellectual disability. Change can be difficult and scary for everyone.
However carers can also take comfort in the knowledge that, with increased independence, your family member will gain a greater ability to speak up for themselves and to choose the life they want.
Many carers begin the journey of promoting independence with the very clear aim of helping their loved one settle into a home and a life of their own, before the time comes when they are no longer able to provide essential daily care.
With this aim in mind you can work with your family member to increase their independent living skills, knowing that you are putting their long-term well-being first, rather than feeling a sense of guilt for wanting things to be different.
We are dedicated to informing and supporting carers and people with a disability through these pivotal life moments. So for those who are ready to take steps to promote independence for a family member with an intellectual disability, we have put together a list of 21 tips that we hope you will find useful.
But before we begin, what is promoting independence all about?
In the past, some disability support services have created dependencies, instead of encouraging greater independence.
The introduction of the National Disability Insurance Scheme (NDIS) is designed to put people with a disability at the centre of their own individual support arrangements and reward initiative and increased capacity.
The UN Convention on the Rights of People with Disability outlines key elements of independence for persons with disabilities:
With this in mind, here are our tips for working towards a more independent lifestyle with your loved one.
We all do our best as parents and carers, often under challenging circumstances.
But, sometimes when we care about someone’s well-being we want to control the situation in order to protect and nurture them. Releasing control of the situation can feel like the end result is out of our hands.
However, it’s likely the more you are managing the situation, the less responsibility others will take on, and the more reliant they will become on you as their carer.
Instead of seeking to manage every interaction and decision, begin to find ways that you can gradually switch to a mode of offering support instead.
Sometimes the shift from “control” to “support” can be as simple as some small tweaks to the language you use. Instead of telling someone what to do, ask him or her what they would like to do.
Making this a gradual process will give your family member a sense of security in the process of moving towards greater self-determination.
A big part of promoting independence is to get others more involved in supporting and assisting your loved one. Family carers are often deeply dedicated to their caring role, and it can be difficult to take an intentional step back and involve other family members, friends or even paid support staff.
As you do this you may struggle with a sense of failure that you are no longer taking on all of the caring role. It is essential that you don’t allow yourself to give in to these feelings! Remind yourself that by creating a larger network of support you are ensuring your family member has the security and stability of having additional carers in their life, which will be vital if a situation arises where you are no longer able to provide care.
The reality is that by trying to do everything yourself there is also every chance you may be inhibiting the development and progression of independent living.
Establishing a trusted support network is something that can take some time as you look for people that you trust, your loved one also trusts, and who are ready and willing to contribute to this journey.
These type of people aren’t necessarily going to be easy to find, but the best place to start is close to home. Think about your family, your friends, your neighbours, or even a select few “outsiders” from within the local community.
You are looking for a small group of supporters that you can talk to openly about your situation, and ask them to contribute in some way, big or small, to your independence goals.
Remember that we are all different and we all see the world through a different lens. That lens is shaped by our situation, our upbringing, our lifestyle and a long list of other contributing factors.
This means that your interpretation of a situation or behaviour could be significantly different to that of your loved one. So if you ever feel yourself moving towards judgement, take a deep breath and try to look at things from a different perspective. Take a moment to view the world through their eyes, and try to understand why they are doing whatever it is they are doing.
This search for meaning will not only improve your relationship, but it will also help you educate others and break down the external barriers to independence.
Emotions are contagious. Feelings like fear, anxiety and negativity can be felt by those around you, even when you don’t put them into words. They can grow like wildfire in the wrong hands. But emotions such as hope, happiness and positivity are just as catchy and contagious and make it easier for everyone involved to embrace change
The journey toward independence can be a slow and challenging one, so celebrate the small wins. Be positive and exude energy at every opportunity. Others will feed off your energy and build confidence as a result.
It’s good to be open to learning and developing yourself. It’s not just a one-way street.
The more you, your loved one, and your support network can work together to adapt and understand each other, the quicker progress will be toward independence.
Talk openly about the things you are struggling with, ask for guidance, search for meaning…
Do whatever you can to build a trusted level of communication that brings the cause of challenges to the surface more quickly, so they can be addressed.
Society can be harsh. Often as a group we are quick to label people and disregard their rights, hobbies and lifestyle choices.
This kind of “labelling” can be an obstacle to promoting independence in adults with a disability. Even with the best of intentions, our community and sometimes even carers can forget about the person behind the disability.
We should all have the right to be recognised by the things that make us unique, whether that is being a “soccer fan”, a “horse rider” or a “chess player”. Respecting and recognising that each person has multiple identities and interests, and removing unfair labels, will help build confidence and the desire to become more independent.
Promoting independence requires patience. It’s about a series of small steps and 1% changes that add up to a more empowered lifestyle and more choice for the individual.
The challenge is that many adults with disabilities have experienced strongly nurturing and highly protective environments. Independence and decision-making power may be foreign concepts, which means that if things happen too quickly, fear and anxiety can take over.
The solution is to start slowly, by empowering the individual with daily life decisions. It can be simple things like how to wash the dishes, or what to cook for dinner. As they build up decision-making confidence with every day activities, then begin to transfer that confidence into new and more challenging situations. Over time, their confidence will grow and the breadth of responsibility will widen.
More choice… it’s a theme that we’re reiterating throughout this article, because essentially that’s what independence is all about.
Everyone deserves the opportunity to choose their own friends and decide what hobbies they would like to do on the weekend. Enabling this power of choice is an important way to support individual growth and development.
The introduction of the NDIS has formalised this push for more choice and greater independence.
People with a disability in Australia now have a choice on where and how to access their support network and care, using their NDIS support package. The change has come about because NDIS funding is directed by the individual with a disability (or their decision maker), instead of being given directly the service provider.
This is a significant step towards increased independence across the board, meaning that carers and the support network of each individual are in a position to increase people’s ability and opportunities to be involved in decision-making about their own life.
For ideas about how to do this, read our blog ‘How can I involve the person I support in decision making’.
Once this journey to independence begins to progress beyond decisions related to daily at-home rituals, you can integrate the process with community activities.
For example, you may be able to encourage your loved one to catch the train to the grocery store and pick up the shopping. Initially they may need to support on these trips, but after a while they may be able to go independently. It’s another small step towards building their capacity for independence.
You could also begin to facilitate and encourage interactions with local community groups such as a local church or a sports club that runs regular events.
Try to find community groups that closely relate to your loved one’s interests and hobbies. This will get them excited to go along and accelerate the building of self-confidence.
Of course, with any of these activities it may be necessary to check out the groups prior to going along. See how they interact, get to know some of the people yourself and evaluate whether you think the group would be a good fit.
Anything you can do to break the cycle of dependence will help, no matter how small you may think it is at the time.
By interacting with more and more people outside of the primary carer and direct support network, your loved one will build confidence and start taking initiative.
Provide opportunities for socialisation and independent living, and over time you can allow this to happen without you being present.
As well as increasing social interactions, you can begin the journey to increased independence by encouraging other confidence-building activities.
For example, registering your loved one to vote in local, state or federal elections is a great way to give them a voice in the community.
Education plays an important role in increasing independence for adults with disabilities. This education is not, however, always targeted at the individual.
It’s important for our local communities to be open and willing to embrace diverse cultures, religions and abilities – and this can take some educating.
Many people are misinformed, or uneducated, about the abilities that adults with disabilities actually have. This isn’t their fault. Often people are too concerned about offending someone to ask these sorts of questions. Give them a helping hand to understand, so they can act accordingly. It all helps towards an inclusive community.
Some people may our blog with tips on improving communication with people with a disability useful.
It’s common for adults with disabilities, especially intellectual disabilities, to have a fairly inactive lifestyle and unhealthy diet. This lifestyle can lead to obesity and more severe diseases such as diabetes or heart disease.
When you are looking to promote independence, you need to be aware of the education required to make healthy lifestyle choices.
Education alone won’t cut it though. You may need to help your loved one create daily habits that will contribute to a healthy and happy life while they are not with you. A great place to start is with a daily dose of light exercise and a healthy, balanced diet.
For some reason the topic of sexual health as it applies to adults with a disability is somewhat of a taboo subject, but it shouldn’t be. In fact, we need to talk about it more.
Independence comes in many forms, including by empowering each individual to participate as much as they are able to in their own sexual health decisions.
Of course there is a certain degree of education required for everyone involved to keep these decisions on the right track. Be aware of the risks of sexual abuse for dependent adults, particularly people with an intellectual disability, but don’t let them dominate the way you provide choice and freedom.
Adults with disabilities want to explore and express their sexuality just the same as anyone else. Recognising this and providing an environment where they can make decisions to do so, in a safe and informed way, will help promote further independence in their life.
Working – whether to learn, to make money, or to volunteer your time – can provide people with a sense of purpose. It’s an opportunity to contribute to society and develop improved self-confidence and interpersonal skills.
Employment or volunteer work is a critical component of independent living and helps promote inclusion and build friendships.
Endeavour Foundation is the largest employer of people with a disability in Australia, and also offers vocational training, so if you are looking for somewhere to get started, please click on the button below.
Increased independence often comes with the need for a new skill set. The key components required to help people improve their skills are access and support. People with a disability must have access to the right learning opportunities – tailored to their interests and abilities – and support from a network of friends, family and mentors.
Encourage your loved one to build a learning and career plan. Something that maps out a pathway to achieve their goals and acquire the knowledge or qualifications they need to sustain meaningful employment.
This plan will help out at some of the hardest crossroads in life, such as transitioning from school to work, and eventually making the move towards a more independent lifestyle.
You may look to extend your support network to include mentors, trainers and teachers that can facilitate and progress this plan. Sometimes all it takes is someone from outside the family circle who can identify new skills and abilities, and champion your loved one on into greater personal achievements.
Learning & Life Skills
The secret to promoting independence and making it sustainable isn’t about making one “big” change. It’s a series of smaller changes that combine to look like a bigger change from the outside.
So start developing skills with low risk daily activities – the cooking, the washing and the ironing. Then when you’re both ready, move onto social and life skills – communication, relationships, shopping and participation in local community groups.
These daily life skills will build confidence and prepare your loved one for the next step, which is developing employment skills – money handling, using technology and taking part in interviews.
There is no perfect amount of time that it should take for all of these skills to be developed. Each person will have their own pace of learning and growth, and realistically there may be a few bumps along the way. It will depend on the individual, their abilities and their desired speed. So take it slow and see what happens.
Advancements in technology continue to make learning and development a faster and more approachable endeavour.
Perhaps the most widely used piece of technology in learning for people with an intellectual disability is the iPad or electronic tablet. The iPad is intuitive to use, and can offer a customised learning environment for every individual.
The iPad can also be loaded with a library full of helpful applications that are specifically built for assisted learning and better communication. For example, Assistive Express and Proloquo2Go both provide text to voice communication capabilities for individuals who require assistance with verbal communication.
On top of the learning opportunities, iPads are fun to use and don’t come with any of the negative stigma associated with ‘special equipment’.
We are creatures of habit. Most of the thoughts we have and the activities we do every day are exactly the same. Breaking these habits, or creating new ones, can be hard because often we resist change.
But you can use this to your advantage to help others develop skills and learn new things. Repetition is the key. If you do something enough times it will soon become second nature.
Promoting independence for people with a disability can be a hard and confronting journey, because your instincts encourage you to protect and nurture.
But if you can embrace the uncertainty and commit to supporting your loved one on this adventure, the end result will be a positive and life-changing one for both of you.
Here are the key takeaways for promoting independence in adults with a disability:
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A practical, comprehensive guide to the NDIS, to help people understand the various components of the NDIS and how to access them.
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