Whether a pedestrian, holidaymaker, home renovator, someone receiving a medical test result or a mother giving birth - life can change in a blink of an eye.
As a care consultant for more than 35 years, I have seen the sudden impacts on families when a loved one, be they an adult or new born, is diagnosed with a permanent disability.
International Day for People with Disability is the day we make that extra effort to promote the inclusion of everyone with a disability to ensure they live a good life.
The cornerstone of this inclusion is the comfort, encouragement and reassurance given by family members. Invariably, leading the charge as the primary carer is a parent(s) or partner.
It is my observation that for the person with a disability to live a good life, their carer must be supported to ensure they too live their best life and enjoy good health while also ensuring their loved one has the best care and support.
Parents at Work have asked me to share knowledge on how to thrive at work and at home when caring for a loved one with a disability.
While every situation is different, I have listed some measures which, when taken early on, can help progress the journey of greater independence for the loved one and carer alike.
As a first step, explore the Australian Government’s Carer Gateway. It gives carers access to counselling, peer support, flexible respite options and practical advice. The Government has invested $700m over five years (2021 to 2025) in the gateway to make your life easier so take a look.
Speak to your boss
Fully disclose the situation with your boss or team leader and keep them informed throughout your journey. You will need their understanding and support. If you work for yourself, seek the support of your team and clients, and move quickly to organise quality care and support services. Don’t do it alone!
Do not give up work
Your work will be your foundation of "normality", another point of focus, contact with others outside the care circle - your work will give you a sense of self. Consider speaking with your boss about working a four, three or two day week, but don't give it up.
Seek the help of a professional counsellor early on and consider counselling as a life-long support.
Feelings of guilt will arise throughout your journey and I encourage you to read my blog on overcoming these feelings.
Contact the NDIS – 1800 800 110
If your loved one with a disability is under the age of 65 years, and meets the eligibility requirements of the National Disability Insurance Scheme (NDIS), they will receive government-funded support and assistance from an NDIS Local Area Co-ordinator to develop a care plan, and referrals and linkages to local supports.
As the working parent and carer, it is important you take part in the care plan discussions, in particular those around respite supports that promote independence for both you and your loved one. We can support you as an independent advocate on your NDIS journey to ensure all the puzzle pieces come together.
Respite supports, better described as short breaks, may see your loved one:
- Join and participate in a new community group outside the home.
- Enjoy a short stay out of home to try new things and make new friends.
- Remain at home with temporary periods of extra personal supports while you, the carer, take a break.
Call on a care consultant for help
Due to work demands, you simply may not have the time to trawl through the NDIS and care provider websites, fully consider all the care options available, understand the government subsidies and support budgets, and feel informed enough to help your loved make the right choices and complete all the paperwork. It can be overwhelming.
If this is your situation, I recommend calling on the expertise of a care consultant, like myself, to sort it all out. For a one-off fee, you can remove considerable stress and a large impost on your time.
Be supported by professional advisers
A good lawyer, accountant and financial adviser will help you with advice on planning for the future and the paperwork in obtaining government subsidies. Have the financial conversations with your professional advisers early on and this will reduce your anxiety on that front. In making difficult and complex financial decisions, it helps to have an expert by your side.
Build a support group
You will need to spread the load. While everyone is busy, I recommend speaking with family members, friends, neighbours and volunteers about whether they would be prepared to support you in times of emergency or visit your loved one for social interaction on a regular basis.
The visits may be once a month or once every six months - simply try and schedule some regular social visitors in the household calendar. The building of a carer support team is one of my four practical steps for new carers shared in this blog.
This discussion on your loved one’s future independence needs to take place at some point. Having that discussion with professional advisers will relieve you of any underlying anxiety of what happens if your loved one outlives you. You can read through a sample of our case studies revealing the many ways in which independence can be achieved.
If you need help with challenges arising from caring for a child or partner with special needs, please feel free to call or email me, Danielle Robertson, for a no obligation, complimentary discussion.
Phone: + 61 418 737 357 (international calls) | 0418 737 357 (local calls)
Further reading and support from DR Care Solutions
Article: Overcoming the guilt felt as a carer