Low needs ASD - planning for future
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Anonymous
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Hi. We are going to a financial planner soon and I wondered whether to factor in having a young child with ASD, with low support needs.
Specifically, I am wondering about whether our child will be able to maintain employment in adulthood. It is quite difficult to get our child to do non-preferred activities or anything that’s hard or requires effort. While I know adulthood is a long way off, from the statistics I’ve read about employment rates for “high functioning” folks with ASD, and the frequency with which this population is underemployed and unemployed, I am concerned and thinking we should do some contingency planning, if possible. Does anyone have experience with this? Thank you. |
Anonymous
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What I've chosen to do is, open an ABLE account for my dc. This way, she will have flexibility in how to spend that money, should she go to college or other higher education, or have other needs-particularly if full time employment does not end up possible for her.
Ancedotally, I have a co worker (known for years) whose DS has asd, and it took him till about 30 to work full time and drive-but he does, and he lives in an ADU they built in their yard. He's come a long way. |
Anonymous
| There are many autistic people who are employed, married and have kids. It is impossible to know what one child's trajectory will be. |
Anonymous
| I put my assets into a trust and plan to be a bit conservative in spending them on myself so there should be enough left for them to subsist on if they need to. I also will convert any inheritance I get from my family into a trust - one thing I know I will be getting is a condo from a family member. If my child doesn’t appear to be fully self sufficient as an adult, they can live in the condo (owned by the trust) and there should be enough in funds in the trust to pay for taxes and condo fees. I presume kid can at least work at McDonald’s or Walmart at a minimum to buy other things. My kid is in high school now and I’m not sure how college will go but it’s clear that they will be able to manage some kind of job at a minimum. |
Anonymous
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It certainly doesn't hurt to plan for the worse. My autistic teen has gotten slightly better about doing nonpreferred tasks and as she's gotten older, is more in control of what needs to be done. College is much, much better for her than high school.
I would also save for the possibility of needing more than 4 years to get through college and/or needing additional paid support. |
Anonymous
| Not op, can someone talk about ABLE and trust more. Can low support need kid open and use them? I and DH do not expect our 2 low support needs( both high functioning ASD/ADHD) ES kid to take care of us, so we have been trying our best to fund our post retirement fund. The current expenses for kids are high like aftercare care, lessons, therapies and tutoring etc.. Our retirement fund is not that high. We had opened 529 (we reside in MD) accounts for them, but there is not much money in it because we are not sure if they could attend college. Should we try to open ABLE or special need trust? Are they tax deductible? |
Anonymous
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We opened an ABLE account and a Special Needs Trust.
The trust will be funded by life insurance and the sake of our home after we die. |
Anonymous
| I don’t think there is really any way to tell right now. You will have a better idea by late elementary or early MS. In any event, the thing to invest in is a sustained effort to ensure your child acquires all the “activities of daily living” (ADL) skills that they can. There is some research that kids with autism and normal/high IQs start to diverge from their NT peers in ADLs as they get older, and that is more incapacitating than their academic skills. So invest in all the support and training you need to make sure they learn the skills to be independent. Tons of exposure to real life situations, learning to take transit, drive, order in stores, conduct themselves in a workplace, etc. |
Anonymous
Yeah that is by the current extremely expansive definition of autism. |
Anonymous
You should open an ABLE account. You can roll your 529 money into the ABLE account. Under the tax code, ABLE accounts are a type of 529 account so they’re eligible for the same tax treatment (ie you can get a deduction for your contributions and withdrawals for eligible expenses are tax free.) The qualifying expenses for an ABLE account are much, much broader than 529 - “disability related expenses” are very broadly defined for ABLE accounts. You can use the money for expenses you have now - the aftercare, tutoring, therapies, lessons, etc. - and also save it to use for college down the road. If they go to college they have the money, but if they don’t they can also use the money for everyday life expenses too. I think special needs trusts are primarily necessary if you think your child will be reliant on government funded supports as an adult and you anticipate leaving them assets after you die. Many government supports are limited by income (and the thresholds are very very low - having 2k in assets to your name can render you ineligible for some programs) so if your child inherits your assets, may lose government services that are essential for their survival. So if your kid will need government services, and if you’re going to leave them anything, a special needs trusts is warranted. I think every kid with disabilities that is eligible for an ABLE account should have one. And every parent should consider whether a special needs trusts is necessary. You might not need a special needs trust right now, but you should reassess as time goes on and you see how your child is doing and how your financial life plays out. (You can also hedge your bets and have a will that directs people to create a special needs trusts for anyone beneficiary who meets certain disability criteria at the time of your death so that funds are left to the trust rather than to the disabled beneficiary outright.) |
Anonymous
I'm the pp who has that for dc. Autism is a qualifying dx for an ABLE account. I recommend going to the able united website and reading all the info there - it's Florida but able is a national program. I don't know about the trust. |
Anonymous
These are questions your financial planner should be able to guide you through, if you’re working with a planner with experience with families with special needs. If they don’t have special needs experience, don’t work with them. Financial planners are expensive and you’re not getting your money’s worth out of your financial planner if you have to crowdsource financial solutions on DCUM beforehand. You want a planner that has worked with families like yours before and having a family member with a disability/special needs has a huge impact on your financial life. |
Anonymous
The ABLE National Resource Center is the national organization that can provide broad information regardless of where you live. They have lots of webinars and trainings and are an overwhelmingly useful resource for up-to-date, and clear information. https://www.ablenrc.org/ |
Anonymous
But the diagnosis has to be actually disabling, which may not be the case for “low support needs” autism. |
Anonymous
That is the current definition that is being used. And the reason it is expansive is because when they separated it out into different diagnoses they could not be consistent about who got which diagnosis or predict future support needs. Even with kids that have moderate support needs as young children, there is a small percentage that completely recover and do not qualify for the diagnosis as adults. |