Supporting the siblings of people living with a disability or chronic health condition

2019-10-09
We often forget that for every person with a disability, theres probably a sibling or extended family helping support them or who are the financial backup for that person too. We often forget that for every person with a disability, theres probably a sibling or extended family helping support them or who are the financial backup for that person too.

Supporting the siblings of people living with a disability or chronic health condition

Today there are 2.1 million Australians of working age (15 – 64 years) who are living with a chronic illness or have a disability; from mild to profound.

So it's fair to assume there’s also a lot of siblings of those same people living with a disability or chronic illness.

We often forget that for every person with a disability, there’s probably a sibling or extended family member helping support them or who act as the financial backup for that person too.

Jump Ahead

It’s easy to feel overlooked when somebody else needs constant attention

Our experience has been, notwithstanding the greater awareness of the needs of people with a disability, there’s usually a member of their overall family structure who is often overlooked and neglected; the siblings of those with disabilities.

  • For these brothers and sisters of siblings with additional or special needs, their important contribution is often minimised or missed completely within their family or by government and professional service providers as well.

This is despite the fact;

  • they’re probably spent more time with them and understand their needs, moods and emotions better than many others; and
  • will usually remain in the lives of their brothers and sisters much longer than anyone else, and want to help create a good life for themselves and their siblings too.

The personal cost of uncertainty and social isolation

Many face a range of complex emotions about their situation and report:

... feeling a sense of isolation, uncertainty about social acceptance and understanding from others and often an overwhelming sense of financial uncertainty

Add to this the additional costs of caring for a sibling with additional needs, its inevitable drain on already stretched incomes and it's easy to see how families and relationships can fracture.

Statistical invisibility

Statistical information about these brothers and sisters of siblings living with a disability is conspicuously absent from the available government data, so many of their needs often go unrecognised, unexamined, and unsupported.

An important note on supporting roles:

It's important here to acknowledge and not assume siblings of people living with a disability or chronic health condition will automatically take over the primary care for a person with a disability. In many situations, siblings want to play their role as brother or sister and not carer. [Aust e-Journal Advan. Mental Health (AeJAMH) Vol 7, issue 2, 2008]

Key life changes

Just as there are many types and levels of disabilities and illnesses, there are many types and levels of care and siblings who support them; no two circumstances being the same.

  • That said, there are some common life events that can act as a good reminder when to update our plans and thinking when we have a sibling living with a disability.

Adapting to changes

When dealing with the practical effects of living with special needs, it’s often more about constant adaptation rather than a simplistic ‘one plan fits all’ approach.

  • When approaching change, it's important to set the context and recognise what period of life you’re currently in

5 Life events that might impact your special needs sibling

  1. You're single and moving out of home for the first time
  2. You’re partnering up and starting your own family
  3. You (or your other able-bodied siblings) are moving away
  4. The inevitable transitioning of caring roles from aging parents to either family members or others.
  5. Your sibling with additional needs has experienced a major change in their care needs.

10 Suggestions to help you think through changing times

Complex and changing situations usually benefit most from a project-based approach where key issues are agreed upon over general issues and prioritised, reviewed and updated regularly.

You can't plan for a person's entire lifetime in a single conversation.

Here are some of the conversation starters we share with our clients who have siblings living with special or additional needs.

  1. Recognise what period of life you’re currently in and what may mean for you and your own family.
  2. Recognise what period of life your parents (assumedly the primary carers) are currently in and what that means for your sibling they may care for, and how that can be expected to change over time.
  3. Recognise the type and level of support you currently provide and how that will change over the next 3-5 years. Are you acting in the role of:
    • A daily care provider?
    • An advocate to the health care service providers?
    • The ultimate financial backup?
    • Or somewhere in between?
  4. Recognise what are the statistically highest risks to your own stability first
  5. Consider the impact upon your special needs sibling if:
    • you can't continue to earn your income
    • you suffered an accident or major medical issue you are unexpectedly passed away by accident or illness
  6. Do you need to separate your own personal insurance policies from any designed to provide for your additional needs sibling (so there are no disputes later)?
  7. Do you need help to update (or setup) your own estate planning documents for your own family and your sibling living with a disability or chronic illness?
  8. Who has current responsibility for managing your sibling's care plan?
  9. Do you have a personal care or support budget you allocate each year for your sibling?
  10. Make peace with the reality of affordability and that everything is usually a ‘best to budget scenario’.

Case Studies

There are many different ways people manage financial stress when they have siblings living with a disability or chronic health condition.

Here are four common examples.

Case study 1 - When you’re a full-time carer and you don’t get paid super

Many carers either reduce their work commitments or don't work at all, so they can be the primary carer for a child (or sibling) with additional or special needs.

  • Problem: This means reduced or zero super contributions received by that person. 
  • Option: If your spouse (husband, wife, de facto or same-sex partner) is a low-income earner or not working at the moment, chances are they’re accumulating little or no super at all to fund their retirement, so additional spouse contributions might be needed to help make up for that loss.

For families where one spouse works and the other is either a part-time or full-time carer, please speak with us about ways to add to your partners super fund.

Case study 2 - When you’re not the carer but the big sister or big brother backup

Many siblings avoid the role of Carer as they want to continue in their role as a brother or sister and remain both Advocate and big picture financial backup.

  • Problem: This means protecting the stability of their own income is important, not only to their own family should a sickness or injury stop them earning their income, but also understanding the potential longer-term destabilising effect upon everyone who relies upon them financially.
  • OptionIncome Protection can be a key part of your personal backup plan and crisis recovery insurance can provide you with an emergency lump sum if you suffer a medical crisis even listed in the policy, to help pay for your recovery costs and stabilise your financial position while you recover.

Case study 3 - When care needs to transition from aging parents to the broader family or others

This is a particularly difficult time and requires a significant level of preparation and early learning about the available options (and planning for the unexpected).

For many families, it also usually involves a re-ordering of family participation and financial contributions too.

  • Problem: While a Special Disability Trust (SDT) is a useful way for families to financially plan for the long term care and accommodation needs of someone with a severe disability, it's a management structure that still has to be funded.
  • Option: Many families with siblings living with more profound special needs or chronic illness use a big family approach. This is where working adult siblings agree to jointly pay the life insurance premiums of the primary carer and/or their parents - both as a backup plan for themselves and as a way to fund a Special Disability Trust later. (While not the subject of this article, a SDT is something people with siblings living with a profound or chronic illness need to be aware of, especially should the needs their sibling become more profound over time.)

Case study 4 - Caring for a sibling who may be living with a disability or chronic illness is expensive.

If you’re a single parent with a child with a disability, making the most of your limited resources means a constant juggling and re-prioritising as situations change.

  • Problem: Keeping track of paperwork and financial issues mean sometimes key paperwork can get lost or become ‘out of sight and out of mind.’
  • Option: When it comes to key estate planning documents or making sure a Binding Nomination in an insurance policy is kept up to date, Sapience clients can keep backup copies of key documents scanned and held in our secure data warehouse for later use.

If you’re the brother or sister of a sibling who may be living with a disability or chronic illness, Sapience provides a deliberately bite-sized approach we call Block Planning to help simplify and separate many of the financial complexities, into more bite-sized, understandable and manageable projects. 

We call this scaled advice, you might call it common sense, but it's just another practical way Sapience supports our clients who are busy adults with siblings living with a disability or chronic illness.

Resource links:

Contact us today here to see if we're the type of people you'd like to work with.
Drew Browne

Drew specialises in helping people protect and provide for what matters most in their lives. He's an award-winning writer, speaker, financial adviser and business strategy mentor. His company Sapience Financial and Investment Services is committed to using business solutions for good in the community, and in 2015 certified as a B Corp. In 2017 Drew was recognised in the inaugural Australian Westpac Businesses of Tomorrow national awards. Drew writes for successful Small Business Owners and Entrepreneurs at Smallville, his blogs can be read on Amazon.com and you can connect with him on LinkedIn.

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Drew Browne

Sapience Founder & Director.
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