The future...

[Bimmerbill]

OK, its been about 8 months since my DD was diagnosed with autism. SHe is making remarkable progress in many different areas and I am feeling a bit more optimistic about the whole situation.

But, I'm a long range thinker/planner (trying to learn how to live day by day) and I wonder what my best strategy is to insure DDs future.

It is a possibility she will never live on her own, have a relationship, family, (meaningful) job, etc.

How do I position myself to best support that? Right now I'm paying off all debt and making good progress. Only have the house ($160K) and a $5K car loan and a $4K student loan. Debt = to about 2 years of gross salary.

Do I just invest and try to sock away as much money as possible in case she doesn't become fully independent? I got the life insurance end tied up, thinking of a special needs trust next.

I still consider myself young, but I'll be 43 in a few months. So, I guess I'm feeling that I won't be around to support her as she gets older.

Who knows what sort of social programs they may have by then but I don't want to rely on the state/feds.

Anyone deal with similar issues? Heck, I feel guilty spending any $ sometimes because it feels like I should save every cent for her.

 

[LOL!]

I am not in your situation, but I had the following thought: Since a retirement portfolio is supposed to last 30 years or even more, isn't it supposed last in perpetuity? If your daughter always lived near you and could rely on you for support, would not your estate that she inherited be nearly sufficient for her needs? As an adult would she not qualify for SS disability?

It seems that, long-term, money would not be much of an issue if she piggy-backed off your retirement and your death. More of an issue would be who would stand in for you when you were gone to help her manage?

 

[Bestwifeever]

I'm so glad your daughter is making progress, Bimmer!

You do have more to consider in making long-range financial plans, maybe life insurance, etc. Maybe a fee-based financial planner would be able to help--are there support groups or agencies where someone in a similar situation might be able to recommend someone?

 

[ERD50]

I am not in your situation, but I had the following thought: Since a retirement portfolio is supposed to last 30 years or even more, isn't it supposed last in perpetuity?

Bimmerbill, I'm afraid I don't have any words of wisdom for the difficult position you are in, but maybe I can add some financial perspective:

I will just say that, if we think in terms of a 4% withdraw rate, a 30 year portfolio has a 95% chance of success (per FIRECALC and historic data). Or, a 5% chance of failure. The failure rate increases as the time frame increases.

From playing with FIRECALC, I've found that you need to reduce the withdraws to about 2% to avoid deep draw-downs in the portfolio ( dipping below 50% of start, in today's $). And 2% also seems to get you to a "forever" portfolio.

So that does mean saving 2x the "typical" view, not easy of course, but that should get you to a "forever" inflation-adjusted portfolio.

Like others have mentioned, with SS and other support mechanisms, you migh have to try to figure out just how much annual expense would be required on the personal side to provide a high quality of life. I have no idea what that would be.

-ERD50

 

[Bimmerbill]

I do go to a few parental support groups. Most deal with the daily issues that pop up: getting services/therapy, schools, special ed, how to pay for it all, behavioral problems, family stress, fighting with the school district, etc.

NH doesn't have that many public services, at least for autism. That is still sort of a gray area it seems. Its not like MR, which has a pretty decent support system and programs in place. SS doesn't consider her condition a disability, so I can't apply for SS disability payments. Same with medicare/medicaid. Tho there is a special medicaid (Katie Beckett) I may be able to apply for but that has a low incidence of being granted. Takes a few years too, for 3-$400 a month I think.

That being said, with the increase in autism we seem to be seeing, I think more and more will be available as time goes on.

I think if I make myself as secure financially as possible, it will benefit DD. That is my plan and I'm working it. There is always the worry that I'll have just enough $ in the bank to NOT qualify for any aid, and not enough to get quality care.

 

[Rich_by_the_Bay]

Bill,

This sounds to me like something a good estate planning lawyer might be able to handle with you. You'll have concerns about trustees, guardians, etc. since I suppose you will want some oversight of spending and protection from opportunistic types. My brother and family have 3 kids with enormous special needs, and these include Medicaid if/when the well runs dry. There's even a place for annuities in there for asset protection.

Once that kind of planning is in place, I see no reason why you can't manage your investments on your own if you wish. But at least the mechanics of how the money will flow under various scenarios will be clear.

Just a thought.

 

[mews]

SS doesn't consider her condition a disability, so I can't apply for SS disability payments.
.

Actually, my nephew (about 32 yrs old) is on disability with an Asperger's / autism spectrum diagnosis.

While able to communicate and take care of himself with direction, he cannot work.

With a young child, I think the best thing would be to really push all kinds of rehab/ therapy while the brain is still flexible enough to change.

Longer term - special needs trust. You should find an attorney who specializes in this area. If the MR groups are strong in your area, find out from them who has practices that specialize in these trusts and associated planning.

good luck!
mew

 

[FinanceDude]

Agree on special needs trust. That makes sure she gets what she needs, and things are clearly spelled out.

Make sure the primary breadwinner has enough LI.

 

[Bimmerbill]

Yeah, I have plenty of life insurance. My pensions have survivor benefits too. Add in SS and I'm probably worth more dead than alive!

If I die and DW is alive, will the trust be in effect? Or will she be able to override instructions? Or does it depend on how the trust is written?

 

[FinanceDude]

Yeah, I have plenty of life insurance. My pensions have survivor benefits too. Add in SS and I'm probably worth more dead than alive!

If I die and DW is alive, will the trust be in effect? Or will she be able to override instructions? Or does it depend on how the trust is written?

If she is listed as a trustee on the trust, she can operate as the sole surviving trustee, but she will need or want to assign other trustees as a safety measure. Make sure the language in the trust states that she has the right to make decisions in the vent of your death.......