Author Topic: Making a financial plan for special needs child  (Read 949 times)

Euphorbia

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Making a financial plan for special needs child
« on: February 03, 2019, 12:12:58 PM »
I have a child who is on the autism spectrum but is high functioning.  Our school system has had a program for him but he is about to graduate and I'm extremely concerned about his future.  I've been tossing around ideas for starting a nonprofit to employ people on the spectrum. 

Beyond that, I'm looking for suggestions about general financial planning for my child.  I think he would be capable of working at least part-time with some support, but I don't really see him fully supporting himself.

Imma

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Re: Making a financial plan for special needs child
« Reply #1 on: February 03, 2019, 01:22:24 PM »
I have some experience with this, but I'm not in the US, so I'm not sure about what kind of support is available where you live.

Is he graduating from high school or from college? If it's high school, is he planning to go on to college? Is there any kind of support available on campus for him? If fulltime college is too much, are there any parttime / distance learning options?

Are there any nonprofits already that employ people on the spectrum? Where I live there are dozens of them, there might be some in your area too. Does he have a particular strong interest that he might be able to develop into a business or career, with necessary support or in partnership with someone else? I know someone who turned a childhood preoccupation with a certain type of machine into a repair business. The business is co-owned by a sibling who handled the business side of things and they are doing well.

What is important is to make sure there's a longterm plan for housing, income and care. A close relative of mine is on the spectrum and they are in an assisted living facility. They are doing very well there but as it's funded by the local authorities, the idea that they might withdraw funding at any given time is a huge source of stress. Their parents are now getting their finances in order so they can buy their child a small apartment if they get kicked out of the current facility. Where we live it's impossible to find cheap housing on the free market and getting a place in a social housing project can take 10+ years.
As for income, they are on disability benefits and currently looking for work. A wealthy person I used to know bought an annuity for their child on the spectrum so they would always have an income and didn't have to rely on the benefits system.
Care is difficult to plan longterm because the government tends to change the care system every few years.

I think it's very difficult to plan ahead for this kind of situation, because it's impossible to know what kind of support will be available at any point in the future and it can also be very difficult to assess what a person will be capable of in the future. I know people who seriously struggled in their teens and that no one expected to ever be able to support themselves, but 15 years later live a life that's very similar to that of their neurotypical peers. I also know people on the spectrum that did well in high school and struggled later in life.

szmaine

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Re: Making a financial plan for special needs child
« Reply #2 on: February 04, 2019, 08:47:40 AM »
Can you fund a Roth? That's my plan.

Otherwise don't give up hope. Mine keeps getting better and better at life every year.

Can he go to community college? He could go at his own pace at a CC and often some offer 2 yr degrees geared toward specific jobs...for instance my DD's CC offers an IT program of study specifically gear toward "support/help desk" employment and another geared towards network set up/maintenance. Other than academics time spent continuing education is also time to continue growing people skill, organizational skills and other life skills.

My DD has also made a nice group of friends who she gets together with regularly to play Magic the Gathering and Dungeons&Dragons.


Cassie

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Re: Making a financial plan for special needs child
« Reply #3 on: February 04, 2019, 10:56:23 AM »
Vocational rehabilitation is a program in every state that is funded mostly by the federal government but managed by the state. Their job is to help people with disabilities obtain training if needed and work. We would pay for many on the job supports. For instance we would hire job coaches to help them learn a job and they would gradually fade away when no longer needed.  They are called either the Bureau or Department of VR.  It is free for most people. I would also look in SSI and Medicaid.  Some people live in group homes or their own apartment with supports. For instance someone would take them grocery shopping. Start with VR who works with kids starting at 16 and they can give you phone numbers for other supports.

LateToTheParty

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Re: Making a financial plan for special needs child
« Reply #4 on: February 09, 2019, 07:24:10 AM »
Choose FI podcast recently did an amazing episode recently covering this topic. Episode 108. Highly recommend. 

https://www.choosefi.com/108-setting-up-a-special-needs-trust/

MayDay

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Re: Making a financial plan for special needs child
« Reply #5 on: February 10, 2019, 07:05:18 AM »
My 11 year old is autistic so a bit hard to predict at the moment.

He is very bright and his special interests happen to be in well paying fields that tolerate quirky people (computers and engineering).

I still think he will need a lot of support managing tasks of daily living, as well as workplace culture type stuff. I hope he can earn a wage and either weird he can pay for assistance either from a family member or agency. He has a sister but I firmly believe that she should be financially compensated for overseeing things. It is a big job.

I don't know how we'll handle it yet but we certainly are thinking about it. I expect we may set aside some funds to basically subsidize him indefinitely. And if he doesn't need it, great.

familyandfarming

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Re: Making a financial plan for special needs child
« Reply #6 on: February 10, 2019, 09:52:07 AM »
Talk to your child's special education teacher. I'm speaking solely from my experience in Iowa, (teaching art, but worked with lots of IEP students) but your state should have some sort of post secondary program for him/her. Depending on your child's abilities, they can receive free community college tuition and special help navigating college. At other levels, there is free job training/coaching or vocational training offered. The IEP is a document that can help your child navigate the post secondary terrain.

If your child's special education teacher is unaware of what is offered, go to the guidance office. If they aren't aware, check with the principal. If they can't help, check with your local Area Education Agency. Does your child have a social worker? Do everything you can before your child graduates! Get that high school child into the system that helps him/her. A few years after high school graduation is too late.

Be your child's best advocate! Good luck! I am glad my tax dollars go to helping IEP students make the next step. Please take advantage of everything that is offered!

A mom

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Re: Making a financial plan for special needs child
« Reply #7 on: February 10, 2019, 04:05:18 PM »
There are certain important benefits that are available ONLY if an individual is determined to be disabled before a certain age. 18? 21? Talk to a social security expert ASAP

A mom

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Re: Making a financial plan for special needs child
« Reply #8 on: February 10, 2019, 04:08:52 PM »
Euphorbia, do you think your child will be capable of living alone? If not, thatís another important thing to think about.

A mom

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Re: Making a financial plan for special needs child
« Reply #9 on: February 10, 2019, 04:12:21 PM »
One more thing, at least in my state, public schools are legally required to provide education up to age 21. That could give you some more planning time.

StarBright

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Re: Making a financial plan for special needs child
« Reply #10 on: February 10, 2019, 04:17:58 PM »
Someone just started a thread in mini-mustache 's about this. There are several of us with special needs/non neurotypical kids.

Someone on the thread specifically talked about special needs trusts (which I had never heard of!)

It is a new thread - but there seems to be some serious wisdom on it!
https://forum.mrmoneymustache.com/mini-money-mustaches/parents-of-special-needs-children/


I'm a red panda

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Re: Making a financial plan for special needs child
« Reply #11 on: February 10, 2019, 07:06:30 PM »
One more thing, at least in my state, public schools are legally required to provide education up to age 21. That could give you some more planning time.

I thought that was only if they needed the extra time to complete graduation requirements. If they graduate with their peers, they don't get additional schooling.  Is that different where you live.

It's a non degree program, and somewhat expensive, but for a high functioning special needs college aged student who cannot do college level work, I highly recommend something like the University of Iowa REACH program. It helps students learn job and life skills at an adult level.

A mom

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Re: Making a financial plan for special needs child
« Reply #12 on: February 10, 2019, 07:15:11 PM »
Red Panda, in my state also true if they wonít meet normal graduation requirements. In some cases this will pay fo community college voc Ed type courses.

familyandfarming

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Re: Making a financial plan for special needs child
« Reply #13 on: February 10, 2019, 09:50:22 PM »
The 21 year old graduation is for IEP completion and or credit completion. Scrutinize that IEP and be on the same page with your childís special education teacher. Be very candid with your childís team about your concerns and your hopes for your childís future. Itís scary, but know with your advocacy and good programs out there, your child will do well!

A mom

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Re: Making a financial plan for special needs child
« Reply #14 on: February 11, 2019, 07:19:45 AM »
Forgot to mention the 529A accounts.

https://www.nerdwallet.com/blog/investing/whats-529a-account/


 I believe substantial gainful employment is pegged at about $1000/month now.