Long-term financial & estate planning for child on Autistic Spectrum Disorder (ASD) – where to start?

Brendan Burgess said:
We do have few details and when people asked for more details, they were told by other posters that they were irrelevant.
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I think the details [of what the child's long-term needs are likely to be] are highly relevant. The problem is they are only likely to emerge slowly, over a period of years. Which is why I think flexibility is key here, at least initially — don't buy into restrictions that mean you can't use the money to meet the child's needs as they unfold. E.g. if your wealth is largely represented by the equity in your house, and you need to access that wealth to meet the needs of your now-adult child, but you still have three younger dependent children living at home, that's not a great fit.
 
Brendan Burgess said:
Again, depending on age, and the extent to which the pension is well funded already, they might choose not to "tie up" their money in a pension.
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And, in many cases, pensions can be accessed early from age 50.

Early retirement - pensionsauthority

Most pension arrangements in the private sector permit members to retire early in certain circumstances. However, the benefits you receive are likely to be lower than they would otherwise be at normal retirement age.
pensionsauthority.ie pensionsauthority.ie
 
TomEdison said:
if your wealth is largely represented by the equity in your house,
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My point is that they have to pay the mortgage over time anyway. By overpaying now, they save interest and maximise their wealth. They will also end up with lower repayments later when they need flexibility.
 
Tricky one
I’ve some friends in this situation. Initially they weren’t able to put aside anything, one parent was at home full time and any spare cash went on therapies etc. However later they were able to start saving, they took advantage of every state saving scheme available. Don’t think there are any currently on offer but keep an eye out.
My friends were advised to keep the money in their names not the child’s once she turned 18 as it might impact her access to state support, something think about further down the line perhaps.
Nominating a guardian was crucial and over the years they have had to change that, their daughter is 32 now. Her current nominated guardian is slightly younger than her at this stage which is a comfort to the parents as they age.

In terms of where to set aside money there are far more qualified people here to advise but my friends found that flexibility was key for them. They needed to access cash for expensive therapies at various times so not tying all their money up in say 5 years accounts was very helpful.

Best of luck to you and your family.
 
You're starting in the wrong place in my view. Instead of starting with what the future holds for your child, you should be starting with where you are right now financially. Hence I would recommend a seperate thread using the money makeover template.

Secondly, you need to think short/medium term as to what if the child is on the severe end, what would it mean if one of you have to give up work to act as a carer, it may never be needed but at least you are preparing for it if it were.

Thirdly, you need to ensure whatever plan you put in place is for your entire family, not just for one of your kids (if you have more now or in the future). You need to think about their needs as well.

But the starting point is understanding where you are right now. That is the base to take things forward.
 
That’s the one I was thinking of. SSIA. Were there not others? Maybe the others were elsewhere. I recall putting some cash aside for my kids but come to think of it that might have been in the UK. Many years ago now. Worth watching out for any new deals like that.
 
I really appreciate the feedback so far. Apologies for the delay in replying, but bedtime can be a very intense process for us & sometimes stretch well beyond midnight… so only getting to reply now... Also, I'm naturally a private person, especially when it comes to my family - but I do realise that asking for meaningful guidance means being more open. So, here's a fuller picture:

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Financial Background
  • Our mortgage was fully paid off about three years ago… over 20 years ahead of schedule. That was thanks in no small part to the advice I picked up on this forum years ago, so I'm genuinely grateful.
  • Pensions:
    • I expect to exceed the standard fund threshold based on current projections.
    • My partner has significantly reduced their working hours to focus on the children, but I’ve continued to max out their pension contributions annually.
  • My job is well-paid but quite demanding - home life can be just as intense.
    • Before the diagnoses, I had hoped to retire early. Given the long-term uncertainty around our children’s needs, that’s no longer the plan. I'm now thinking more in terms of maintaining flexibility & financial resilience for the long haul.
  • We hold over €100k in shares (even after the tariff impact) and more in cash.
  • We could be better with our financials - we spend big on family holidays; but after that we don't need much. I've no issues driving a 15 year car myself once it is reliable, safe & reasonable economical.
  • Overall, we’re in a strong financial position, and I’m very aware of the privilege that gives us. As my partner reminds me, life is already stressful - we’re fortunate that financial stress hasn't been part of the equation.
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Family Background
  • We’re in our mid-40s and have three children.
  • Two of our three kids have been diagnosed with ASD - one in early teens, the other much younger.
    • There is no intend to have more children… biologically impossible now
  • We’ve been able to access early assessments and private supports when needed. As parents, we regularly attend training / courses to better understand how to support them.
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The Difficult Question

The real challenging question here is: How soon can one reasonably gauge whether a child will be able to live independently or sustain employment?

It’s a hard one. Our older child shows both encouraging progress and difficult setbacks. For example, last week we were advised to take them out of school for the remainder of the academic year due to burnout. It's a lot to process. For our youngest, it’s simply too early to say.

This uncertainty clouds the path forward. I want to ensure we’re doing everything we can to set them up for success - whatever that may look like. But how do you plan when the future could range from independence to lifelong support needs?

Are there strategies that allow for flexibility - decisions that can be reversed if circumstances change? Or is it more of a binary planning process?

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Estate Planning / Will

Before I speak with a solicitor, I’d love to understand what general principles or structures others have used. I like to do my homework before bringing in professionals - so any pointers on what to consider or common mistakes to avoid would be hugely appreciated.
 
And Tom and I were nearly falling out over whether you should overpay your mortgage and max your pension contributions or keep it in cash!

This is not a financial question. It does not sound as if you need much financial advice other than to put your cash into stocks.

Contact the solicitor I referred to and they will advise you.

Brendan
 
You will never make a will if you are looking to the future, because you cannot foretell the future.

Make a will for now. What do you want to happen if one of you ( parents) dies now. What do you want to happen if both of you die now.

That's as good as you will get for now. When your circumstances change, change the will. I advise you think about your wills every 5 years or so or if circumstances change.

Any STEP solicitor will be able to set up a discretionary trust will for you.
 
I’m kind of in the same situation where I’m uncertain how my daughter will develop with ASD. After long consideration I’ve decided this approach. A WILL and separate Descretionary Trust to be set up immediately (rather than instruction in WILL). The Descretionary Trust will protect her if she is reliant on Disability allowance and receives inheritance. If she can hold down a job the Trustees can give her the money if it doesn’t negatively impact her. It covers both possibilities. If you set up the Trust immediately you can act as one of the Trustees and have certainty they will be looked after financially. You will also have the option to gradually fund the Trust availing of the small gift exemption therefore not reducing their life time inheritance threshold. The only draw back of setting it up immediately is you may need to file a tax return every year. I’m just engaging with a solicitor now, so still at a early stage.Best of luck with your family
 
Thanks all of the feedback & links. I wasn't aware of some of the groups, so much appreciated.

Apologies for the delay in replying... I was over-come by other events that took priority. I'll get back to this topic now.
 
1988€? said:
If you set up the Trust immediately you can act as one of the Trustees and have certainty they will be looked after financially.
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Similar situation myself with a teen but general advice seems to be that even though she’s a dependent she’s a bit too old for a trust. Also curious as to where/how you go about setting it up from a practical point of view.
 
@1988€?
Would you mind sharing more info on this,regarding setting up the trust separately to the will?
Is this only worthwhile if you significant money to put into it straight away?
Any idea of the costs involved, or any pointers around any of this ?
I need to update my own will. Its likely that my teenage son will remain on DA long term. While he is extremely academic,he has had serious mental health issues and it seems very unlikely that he will be in a position to balance his needs with a full time job.
 
Setting up the Discretionary Trust immediately is absolutely not just for rich people . I intend to get a solicitor to write the deeds of the trust. I will go to a bank then, with the deeds and open a savings or investment account acting as a Trustee (I’ll also be the settlor with my wife). Once the account is open, I will fund the savings account gradually, availing of the 3k small gift exemption (6k if 2 settlors). I can use some of my adult child’s money indirectly to fund it. The WILL and Trust can be cross referenced. So when I die money will be transferred to the Trust for the dependent adult child. I’m currently seeking confirmation from REVENUE that she will be exempt the 6% once off charge and 1% annual charge. To fund the Trust you could also take out a whole life policy that would be paid on your death.

The advantage of setting it up immediately instead of in your WILL are
1.) You can fund it gradually
2.) You can set everything up now so that the future Trustee (after you die) will have less to do.
3.) You have time to familiarise yourself of the responsibilities of being a Trustee and teach your future Trustee's
4.) Cost is slightly higher initially but less overall because everything is set up.
5.) You have the option to transfer wealth anytime

DISADVANTAGE
Having to manage and administer it for potentially decades before you pass away.

Cost is €1750 plus VAT for separate Trust & WILL
 
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