Help needed thinking through issues re: child’s disability

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Topic Author
EthanAllen
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Joined: Sat Mar 02, 2019 9:50 am

Help needed thinking through issues re: child’s disability

Post by EthanAllen » Sun Apr 14, 2019 12:21 pm

Hello,

My wife and I have adopted a very young child who has a permanent disability (think deaf / blind). Don’t believe there are cognitive issues but the disability alone will have a significant impact on his life, education, career, etc. We’ve been focusing on medical needs first but are now turning to the financial and long term needs and suffering a bit from information overload and paralysis. I assume there are others here who have children or family members with significant disabilities. Any short/simplified thoughts on what we should be looking to do or think about next? For now, here is where we stand:

- I opened and fully funded a 529 able account in his name. Current plan to fund it with max 15K per year, at least until it gets to the 100K mark.
- We don’t have any special needs trust or any other longterm plan on the estate planning front.
- We have informally talked to a sibling who will take care of him if something happens to us, but nothing formalized on that front, and have not changed our generic wills since the addition to the family. (I assume most will say we need to change this first and deal with it ASAP, but we’ve been trying to figure out what is best course of action.)

Any thoughts appreciated on what to prioritize, do next, think about in terms of financial planning etc?

Wife and I are in our 30s, in good health, she is now stay at home mom, and I max my TSP and max both our Roth.

Thanks.

staythecourse
Posts: 6850
Joined: Mon Jan 03, 2011 9:40 am

Re: Help needed thinking through issues re: child’s disability

Post by staythecourse » Sun Apr 14, 2019 12:35 pm

EthanAllen wrote:
Sun Apr 14, 2019 12:21 pm
Hello,

My wife and I have adopted a very young child who has a permanent disability (think deaf / blind). Don’t believe there are cognitive issues but the disability alone will have a significant impact on his life, education, career, etc. We’ve been focusing on medical needs first but are now turning to the financial and long term needs and suffering a bit from information overload and paralysis. I assume there are others here who have children or family members with significant disabilities. Any short/simplified thoughts on what we should be looking to do or think about next? For now, here is where we stand:

- I opened and fully funded a 529 able account in his name. Current plan to fund it with max 15K per year, at least until it gets to the 100K mark.
- We don’t have any special needs trust or any other longterm plan on the estate planning front.
- We have informally talked to a sibling who will take care of him if something happens to us, but nothing formalized on that front, and have not changed our generic wills since the addition to the family. (I assume most will say we need to change this first and deal with it ASAP, but we’ve been trying to figure out what is best course of action.)

Any thoughts appreciated on what to prioritize, do next, think about in terms of financial planning etc?

Wife and I are in our 30s, in good health, she is now stay at home mom, and I max my TSP and max both our Roth.

Thanks.
Hope other more experienced folks will chime in, but these are my first initial thoughts...
1. I would focus on getting the will and special needs trust set up.
2. Term life insurance is a must here.
3. Long term disability insurance is a must with own occupation
4. I would set up a separate EF for the child of x amount and alter each year as you figure out going forward what/ if any not covered costs are going to be involved.
5. Contact your state for available resources for motor/ social/ speech evals (all free) and any recommended treatments and start them ASAP
6. Find a Pediatrician who has a high volume of kids who have the same issues as you child. Recs. here will be he best form the specific therapist that are engaged after the above assessments are done. That world is a small world where everyone knows everyone ONCE you get into the system.
7. Get whatever resources you need to connect with other parents with similar issues. That will be important now and going forward.
8. I wouldn't over invest in 529 plan until you figure out all the above.

Good luck.
"The stock market [fluctuation], therefore, is noise. A giant distraction from the business of investing.” | -Jack Bogle

Isabelle77
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Re: Help needed thinking through issues re: child’s disability

Post by Isabelle77 » Sun Apr 14, 2019 12:43 pm

Yes, you need to formalize the will and custody agreement with your sibling, I'm surprised you were allowed to finalize the adoption without it. We also adopted our children and while I can't speak to the special needs arrangements, I will tell you that our attorney included language in our wills that reads specifically that our children will be treated legally the same as biological children, this is not supposed to matter in most states but our attorney felt it was necessary to include.

Best of luck, our children have been an immense blessing in our lives, I'm sure your son will as well.

123
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Re: Help needed thinking through issues re: child’s disability

Post by 123 » Sun Apr 14, 2019 12:52 pm

Many states provide special education support services (even prior to kindergarten) for children with disabilities. See what the rules and limits are from your local school district. In some states services can begin by age 3 or 4. The idea is to do everything possible to "mainstream" the child into the education system. Services can include daily transportation from the child's home to the special school site and end of school day transportation to the home or after-school care site. Some children may need and be provided with their own attendant throughout the school day. The public schools are in the "business" of dealing with the issues your child faces, you are not alone.
The closest helping hand is at the end of your own arm.

JoeRetire
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Re: Help needed thinking through issues re: child’s disability

Post by JoeRetire » Sun Apr 14, 2019 12:57 pm

EthanAllen wrote:
Sun Apr 14, 2019 12:21 pm
My wife and I have adopted a very young child who has a permanent disability (think deaf / blind). Don’t believe there are cognitive issues but the disability alone will have a significant impact on his life, education, career, etc. We’ve been focusing on medical needs first but are now turning to the financial and long term needs and suffering a bit from information overload and paralysis.
This is clearly something that is worth getting professional help.

You should be working with an adviser to set up a trust for care/assistance for your child upon your demise.
Special Needs trusts can be tricky, but in your case would be very important. You also need wills, insurance, and probably an overall financial plan.

Find a fee-only fiduciary financial planner. Find one that is hourly if that is your preference. They could help a lot. You might also find parent groups which could help some.

You have done a wonderful thing by adopting. Now it's time to plan for a bit further down the road.

Good luck!

Topic Author
EthanAllen
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Joined: Sat Mar 02, 2019 9:50 am

Re: Help needed thinking through issues re: child’s disability

Post by EthanAllen » Sun Apr 14, 2019 1:01 pm

staythecourse wrote:
Sun Apr 14, 2019 12:35 pm

Hope other more experienced folks will chime in, but these are my first initial thoughts...
1. I would focus on getting the will and special needs trust set up.
Agreed. Part of the issue is I’m trying to figure out and get educated on what I want to do, pitfalls, consensus views etc. For example, just make him beneficiary on our will (he’d get stuff anyway under normal estate rules)? Set up a special needs trust? Make the trust a benefiaciary instead of him? Appoint guardian/trustee? I guess the answer is I need to sit down with a lawyer and go through options, but I wanted to get more educated before I go waste time/money on lawyer.
staythecourse wrote:
Sun Apr 14, 2019 12:35 pm
2. Term life insurance is a must here.
Agreed and all set. Both wife and I have term life policies for 15x household income.
staythecourse wrote:
Sun Apr 14, 2019 12:35 pm
3. Long term disability insurance is a must with own occupation
Agreed and should be all set. Am maxing the fed disability benefits.
staythecourse wrote:
Sun Apr 14, 2019 12:35 pm
4. I would set up a separate EF for the child of x amount and alter each year as you figure out going forward what/ if any not covered costs are going to be involved.
We don’t have a separate fund set up but definitely doubled our EF while we figure things out.
staythecourse wrote:
Sun Apr 14, 2019 12:35 pm
5. Contact your state for available resources for motor/ social/ speech evals (all free) and any recommended treatments and start them ASAP
6. Find a Pediatrician who has a high volume of kids who have the same issues as you child. Recs. here will be he best form the specific therapist that are engaged after the above assessments are done. That world is a small world where everyone knows everyone ONCE you get into the system.
7. Get whatever resources you need to connect with other parents with similar issues. That will be important now and going forward.
Thanks and agreed. All set here. Wife is amazing on this front and has stayed home to get on top of all these issues.
staythecourse wrote:
Sun Apr 14, 2019 12:35 pm
8. I wouldn't over invest in 529 plan until you figure out all the above.

Good luck.
I stopped putting anything in a regular 529 since I don’t know if he’ll ever be going to college, but figured a 529A is pretty much like a glorified Roth for him so can’t hurt starting ASAP?

Appreciate your thoughts.

Topic Author
EthanAllen
Posts: 19
Joined: Sat Mar 02, 2019 9:50 am

Re: Help needed thinking through issues re: child’s disability

Post by EthanAllen » Sun Apr 14, 2019 1:06 pm

123 wrote:
Sun Apr 14, 2019 12:52 pm
Many states provide special education support services (even prior to kindergarten) for children with disabilities. See what the rules and limits are from your local school district. In some states services can begin by age 3 or 4. The idea is to do everything possible to "mainstream" the child into the education system. Services can include daily transportation from the child's home to the special school site and end of school day transportation to the home or after-school care site. Some children may need and be provided with their own attendant throughout the school day. The public schools are in the "business" of dealing with the issues your child faces, you are not alone.
Agreed and the state had been surprisingly helpful so far. We have already reached out and begun a variety of early intervention services. His issues may be extreme enough that mainstreaming may not be an option but will see where things go. At the very least, he will need to be in special needs programs throughout. Have been all over the medical and social/educational support front (which has been VERY daunting and a full time job for my wife, but we think we have that relatively under control for the long challenge ahead). Next steps are trying to figure out financial and long term needs in case of worst case scenario.

Topic Author
EthanAllen
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Joined: Sat Mar 02, 2019 9:50 am

Re: Help needed thinking through issues re: child’s disability

Post by EthanAllen » Sun Apr 14, 2019 1:12 pm

Isabelle77 wrote:
Sun Apr 14, 2019 12:43 pm
Yes, you need to formalize the will and custody agreement with your sibling, I'm surprised you were allowed to finalize the adoption without it. We also adopted our children and while I can't speak to the special needs arrangements, I will tell you that our attorney included language in our wills that reads specifically that our children will be treated legally the same as biological children, this is not supposed to matter in most states but our attorney felt it was necessary to include.

Best of luck, our children have been an immense blessing in our lives, I'm sure your son will as well.
Thanks. We just did the minimal basics but have changed which sibling will be guardian because sibling has kids who love him and we’d want him to be around other kids if something happens to us.

We have been lucky to have an incredible support system on both sides of the family, so not worried as a practical matter because we have multiple siblings who I know would take care of him as their own (with or without us setting things up financially), but want to now formalize things a bit. I just can’t figure out what is best in terms of naming trustees/guardians etc.

I guess it makes sense to set up a trust and name the same person the trustee and his guardian, but I’m sure there are countless pitfalls I’m missing.

staythecourse
Posts: 6850
Joined: Mon Jan 03, 2011 9:40 am

Re: Help needed thinking through issues re: child’s disability

Post by staythecourse » Sun Apr 14, 2019 4:23 pm

EthanAllen wrote:
Sun Apr 14, 2019 1:01 pm
staythecourse wrote:
Sun Apr 14, 2019 12:35 pm

Hope other more experienced folks will chime in, but these are my first initial thoughts...
1. I would focus on getting the will and special needs trust set up.
Agreed. Part of the issue is I’m trying to figure out and get educated on what I want to do, pitfalls, consensus views etc. For example, just make him beneficiary on our will (he’d get stuff anyway under normal estate rules)? Set up a special needs trust? Make the trust a benefiaciary instead of him? Appoint guardian/trustee? I guess the answer is I need to sit down with a lawyer and go through options, but I wanted to get more educated before I go waste time/money on lawyer.
staythecourse wrote:
Sun Apr 14, 2019 12:35 pm
2. Term life insurance is a must here.
Agreed and all set. Both wife and I have term life policies for 15x household income.
staythecourse wrote:
Sun Apr 14, 2019 12:35 pm
3. Long term disability insurance is a must with own occupation
Agreed and should be all set. Am maxing the fed disability benefits.
staythecourse wrote:
Sun Apr 14, 2019 12:35 pm
4. I would set up a separate EF for the child of x amount and alter each year as you figure out going forward what/ if any not covered costs are going to be involved.
We don’t have a separate fund set up but definitely doubled our EF while we figure things out.
staythecourse wrote:
Sun Apr 14, 2019 12:35 pm
5. Contact your state for available resources for motor/ social/ speech evals (all free) and any recommended treatments and start them ASAP
6. Find a Pediatrician who has a high volume of kids who have the same issues as you child. Recs. here will be he best form the specific therapist that are engaged after the above assessments are done. That world is a small world where everyone knows everyone ONCE you get into the system.
7. Get whatever resources you need to connect with other parents with similar issues. That will be important now and going forward.
Thanks and agreed. All set here. Wife is amazing on this front and has stayed home to get on top of all these issues.
staythecourse wrote:
Sun Apr 14, 2019 12:35 pm
8. I wouldn't over invest in 529 plan until you figure out all the above.

Good luck.
I stopped putting anything in a regular 529 since I don’t know if he’ll ever be going to college, but figured a 529A is pretty much like a glorified Roth for him so can’t hurt starting ASAP?

Appreciate your thoughts.
Looks like you guys thought of a lot already. Personally, with everything on your plate I would just go see a estate lawyer and run your situation by them and see if you have forgotten something they have seen pop up in their experience and to figure out what type of trust that needs to be formed and why. Estate law is NOT meant for the DIY even though in society we think everything is a DIY job.

Good luck.
"The stock market [fluctuation], therefore, is noise. A giant distraction from the business of investing.” | -Jack Bogle

Topic Author
EthanAllen
Posts: 19
Joined: Sat Mar 02, 2019 9:50 am

Re: Help needed thinking through issues re: child’s disability

Post by EthanAllen » Sun Apr 14, 2019 4:44 pm

The part that’s throwing me off is that should I go to an estate lawyer? A financial planner? Both? Who first?

JBTX
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Re: Help needed thinking through issues re: child’s disability

Post by JBTX » Sun Apr 14, 2019 5:30 pm

EthanAllen wrote:
Sun Apr 14, 2019 1:01 pm
staythecourse wrote:
Sun Apr 14, 2019 12:35 pm

Hope other more experienced folks will chime in, but these are my first initial thoughts...
1. I would focus on getting the will and special needs trust set up.
Agreed. Part of the issue is I’m trying to figure out and get educated on what I want to do, pitfalls, consensus views etc. For example, just make him beneficiary on our will (he’d get stuff anyway under normal estate rules)? Set up a special needs trust? Make the trust a benefiaciary instead of him? Appoint guardian/trustee? I guess the answer is I need to sit down with a lawyer and go through options, but I wanted to get more educated before I go waste time/money on lawyer.
Good resource.

https://www.specialneedsalliance.org/

It is probably a good idea to set up a special needs trust. Whether you want to set it up now, or have it be a part of your will or revocable living trust depends on many factors (which I am not an expert - although we do have special needs teen). If you have a lot of money and assets the trust may not do you much good now, but more likely be helpful when child turns 18. It is probably worth finding a resource to see what if any benefits child may be eligible for now.

You don't want to make any minor child the beneficiary of your will. Better to make trust the beneficiary, and in this case the trust would be a special needs trust.

In terms of IRAS Roths etc you would set up separate IRA trusts.
staythecourse wrote:
Sun Apr 14, 2019 12:35 pm
2. Term life insurance is a must here.
Agreed and all set. Both wife and I have term life policies for 15x household income.
I'd make sure they are long term policies. We had a 15 and a 20 year, I wish I had done a 30 year.
staythecourse wrote:
Sun Apr 14, 2019 12:35 pm
3. Long term disability insurance is a must with own occupation
Agreed and should be all set. Am maxing the fed disability benefits.
staythecourse wrote:
Sun Apr 14, 2019 12:35 pm
4. I would set up a separate EF for the child of x amount and alter each year as you figure out going forward what/ if any not covered costs are going to be involved.
We don’t have a separate fund set up but definitely doubled our EF while we figure things out.
staythecourse wrote:
Sun Apr 14, 2019 12:35 pm
5. Contact your state for available resources for motor/ social/ speech evals (all free) and any recommended treatments and start them ASAP
6. Find a Pediatrician who has a high volume of kids who have the same issues as you child. Recs. here will be he best form the specific therapist that are engaged after the above assessments are done. That world is a small world where everyone knows everyone ONCE you get into the system.
7. Get whatever resources you need to connect with other parents with similar issues. That will be important now and going forward.
Thanks and agreed. All set here. Wife is amazing on this front and has stayed home to get on top of all these issues.
staythecourse wrote:
Sun Apr 14, 2019 12:35 pm
8. I wouldn't over invest in 529 plan until you figure out all the above.

Good luck.
I stopped putting anything in a regular 529 since I don’t know if he’ll ever be going to college, but figured a 529A is pretty much like a glorified Roth for him so can’t hurt starting ASAP?

Appreciate your thoughts.
You have time to figure it out but you may not want a regular 529 plan. Such a plan could count against child's assets when they turn 18 and disqualify him from SSI and Medicaid. The 529 ABLE on the other hand, if done properly, shouldn't disqualify for govt aid. However there are limits, $100k I think, after which point some aid becomes unavailable. In most recent tax law you are now allowed to roll regular 529 into 529 able, subject to annual limits . But obviously you don't want to overfund the 529 ABLE.

Agree with others in exploring school district resources even before kindergarten. Often they do exist for special needs.

Down the road and for estate planning when passing on IRAS to children (via IRA trust) there are advantages to Roth IRAS. Trust tax rates are much higher than normal and Roth IRAS are exempt from taxes.

It is a ways down the road but when one of you draw social security you may also be eligible for adult child social security disability and Medicare. You may decide to draw SS sooner than later to get this benefit.

Topic Author
EthanAllen
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Re: Help needed thinking through issues re: child’s disability

Post by EthanAllen » Sun Apr 14, 2019 5:47 pm

Thank you for that last post and comments.

1. Didn’t know about that website/resource, but will check it out.

2. We both got 30 year term life policies immediately before child for the reasons you mentioned. That should take us both to retirement age. God forbid something happens to us before then, the two term life policies should help greatly. If after that, SS + our savings/estate should help.

3. Don’t know what IRA trusts are but will look into that when time comes. For right now, I assume our IRAs should also name the special needs trust as beneficiary.

4. For reasons you mention, don’t plan to fund 529 except for very limited amount to state plan that is tax deductible, although probably counting that mentally as limited 529 gift for the children of the sibling who will be guardian of our child if something happens. Likely making those children the secondary beneficiaries.

5. Also for reasons you mention, plan to fund 529A in the decade ahead up to 100K limit where it would start affecting benefits.

6. We have tapped into all the local pre-K resources and he is getting special needs attention multiple times a week. It’s been great, although a major struggle, and I feel for the families who don’t have the time/money/resources/education/support system that we are thankful to have to navigate this stuff.

bsteiner
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Re: Help needed thinking through issues re: child’s disability

Post by bsteiner » Sun Apr 14, 2019 6:54 pm

You'll want to make sure you leave enough money for him, which means making sure to save money, and have life insurance until your assets are sufficient.

If you have or will have other children, you'll have to decide whether to provide an equal share, or a larger or smaller share, for this child.

The trust in your Will for this child will for the most part be the same as the trusts in your Will for your other children (or the trusts you would have in your Will for your other children if you were to have other children). The main substantive difference is that he may have a lesser degree of control (or no control at all) over his trust, even after reaching the age when you would otherwise let your children control their shares. You'll probably include some language expressing your intention that the trust supplement but not supplant means-tested government benefits, but the key is making sure that you don't mandate any distributions. Of course, it's generally not advisable to mandate distributions even to children without special needs.

There are some special rules governing trusts that receive retirement benefits. Essentially, none of the retirement benefits payable to the trust may ever go to anyone older than the person whose life expectancy you want to use to measure the stretch (such as the oldest of your children and their spouses, or the oldest of your children and your nieces and nephews and their spouses), or to anyone other than an individual (no charities) or another trust subject to the same restrictions. See my article on this subject in the March 2004 issue of BNA Tax Management's Estates, Gifts & Trusts Journal: https://www.kkwc.com/wp-content/uploads ... 132954.pdf. So each child will have two trusts, identical except for the special provisions needed in the trust that receives the retirement benefits. Both sets of trusts can be included in your Wills.

The drafting is the easy part. A significant percentage of families have a child with special needs. You should focus on who should control his trust (in other words, who you want to have as the trustees).

Unless you expect to have a taxable estate, you probably won't make gifts in trust for him during your lifetime. That way, the assets will get a basis step-up at your death.

Topic Author
EthanAllen
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Re: Help needed thinking through issues re: child’s disability

Post by EthanAllen » Mon Apr 15, 2019 9:17 am

Thank you for taking the time to write that. Some of it went over my head at first read but appreciate the guidance. Will take the time to reread and process that in the days ahead.

gtg970g
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Re: Help needed thinking through issues re: child’s disability

Post by gtg970g » Mon Apr 15, 2019 1:45 pm

You may want to double check the treatment of traditional 529 plans when it comes to assets counted towards medicaid. It is my understanding that these assets do not count since the child is the beneficiary, not the owner. Also, as you state the first 100k in an Able 529 do not count against Medicaid/SSI eligibility. We currently fund a 529 for both kids and will likely roll one of them over into an Able 529 account as needed in the future. Our 4 y/o is disabled and will almost certainly be dependent on us for the duration of his life. We have setup a special needs trust which would be funded upon our passing. To make things simpler currently we have tax deferred assets passing outside the trust to his brother and life insurance and after tax proceeds going into the trust. Once we outlive the term of the life insurance (hopefully) we will need to re-evaluate the beneficiaries on the retirement accounts.

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3CheersforLkyJack
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Re: Help needed thinking through issues re: child’s disability

Post by 3CheersforLkyJack » Mon Apr 15, 2019 4:03 pm

gtg970g wrote:
Mon Apr 15, 2019 1:45 pm
You may want to double check the treatment of traditional 529 plans when it comes to assets counted towards medicaid. It is my understanding that these assets do not count since the child is the beneficiary, not the owner. Also, as you state the first 100k in an Able 529 do not count against Medicaid/SSI eligibility. We currently fund a 529 for both kids and will likely roll one of them over into an Able 529 account as needed in the future. Our 4 y/o is disabled and will almost certainly be dependent on us for the duration of his life. We have setup a special needs trust which would be funded upon our passing. To make things simpler currently we have tax deferred assets passing outside the trust to his brother and life insurance and after tax proceeds going into the trust. Once we outlive the term of the life insurance (hopefully) we will need to re-evaluate the beneficiaries on the retirement accounts.
Our son is under 3 and when we learned of his disability we stopped funding the 529. I like the approach you mentioned above regarding rolling a 529 to an Able. Thinking we should start contributing to the 529 again. He has been diagnosed as such and is certainly disabled at this point but due to his age, we are unsure how significantly the disability will end up being. Probably overly optimistic, but I keep wondering what happens if you fund an Able account and the child ends up not being disabled in perpetuity?

JoeRetire
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Re: Help needed thinking through issues re: child’s disability

Post by JoeRetire » Mon Apr 15, 2019 4:14 pm

EthanAllen wrote:
Sun Apr 14, 2019 4:44 pm
The part that’s throwing me off is that should I go to an estate lawyer? A financial planner? Both? Who first?
Both. Personally, I'd go with the financial planner first.

CFOKevin
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Re: Help needed thinking through issues re: child’s disability

Post by CFOKevin » Mon Apr 15, 2019 4:28 pm

You have found one of the very best places on the web for advise on this issue, congrats.

We have a 26 year-old with disabilities who has recently moved into her own apartment with a roommate/caregiver and I'll try to add (and not repeat) the great advice you've gotten so far.

Parents dealing with similar issues in your locale will be a wonderful help. Try to network with those 5-10 years further down the road to learn what their experience has been. While some programs are everywhere like Birth to 3, others vary by State and even within States.

I'd recommend a good estate attorney with experience in special needs. Not too hard to find one. Financial planning can be DIY if you are an average Boglehead. For us, we went ahead and set up a special needs trust early in our daughter's life as we had lots of relatives interested in supporting her future financially and it was a good vehicle to use. The annual costs of administration and tax returns probably make $50K a reasonable base amount to justify a set up like ours.

You and your wife are doing something great. But, there is lots of hard work ahead. If your State's budget is in good shape, lifetime supports will probably be pretty good. Enjoy it and spend lots of time on each other as a couple. Divorce rates are crazy high in families with special needs due to the added stress. Get family members involved, especially children. Kids with special needs awareness/experience gain maturity, compassion and judgment far beyond their years. It is a real benefit in many families we know.

Best,

Kevin

Topic Author
EthanAllen
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Re: Help needed thinking through issues re: child’s disability

Post by EthanAllen » Mon Apr 15, 2019 6:51 pm

Thanks, Kevin. What does this mean:

“The annual costs of administration and tax returns probably make $50K a reasonable base amount to justify a set up like ours.”

Does that mean you’ve put in 50K worth of legal/tax fees setting up these trusts? I was hoping for 1/10th that amount...is that naive? We have mid-six figure net worth, not seven figures or higher as many here.

CFOKevin
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Re: Help needed thinking through issues re: child’s disability

Post by CFOKevin » Mon Apr 15, 2019 9:47 pm

EA,

Sorry I wasn't clearer. For us, the total cost of wills/trusts was about $2,500 to set up and the Supplemental Needs Trust added about $750 if I recall correctly. Annual costs of the trust can be zero if you are good preparing taxes yourself (trust returns plus a K-1) but, more likely, will be $500 to $1,000.

Given that annual admin cost, and the other available options to get tax-deferred growth, I believe it only makes sense to consider immediate funding if you expect $50K or more in assets. That puts the annual admin cost at 1-2% which is as much as I think a Boglehead-type could stomach.

Kevin

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happymob
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Re: Help needed thinking through issues re: child’s disability

Post by happymob » Tue Apr 16, 2019 6:56 am

staythecourse wrote:
Sun Apr 14, 2019 12:35 pm
8. I wouldn't over invest in 529 plan until you figure out all the above.
The account mentioned was a 529 able account, which I would over invest in. They have tremendous flexibility compared to purely educational 529 plans.

carolinaman
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Re: Help needed thinking through issues re: child’s disability

Post by carolinaman » Tue Apr 16, 2019 7:15 am

123 wrote:
Sun Apr 14, 2019 12:52 pm
Many states provide special education support services (even prior to kindergarten) for children with disabilities. See what the rules and limits are from your local school district. In some states services can begin by age 3 or 4. The idea is to do everything possible to "mainstream" the child into the education system. Services can include daily transportation from the child's home to the special school site and end of school day transportation to the home or after-school care site. Some children may need and be provided with their own attendant throughout the school day. The public schools are in the "business" of dealing with the issues your child faces, you are not alone.
We have a special needs granddaughter. She has received a number of services and aid from state and Medicaid even though her parents have a good income. Check to find out what services might be available. Also, there will likely be an organization of families with similar situations that you should get to know and network with. As poster above states, public schools are now equipped to deal with many special needs situations. There is a lot of help out there.

I commend you for adopting this child and pray that things go well for you and your family.

staythecourse
Posts: 6850
Joined: Mon Jan 03, 2011 9:40 am

Re: Help needed thinking through issues re: child’s disability

Post by staythecourse » Tue Apr 16, 2019 12:52 pm

happymob wrote:
Tue Apr 16, 2019 6:56 am
staythecourse wrote:
Sun Apr 14, 2019 12:35 pm
8. I wouldn't over invest in 529 plan until you figure out all the above.
The account mentioned was a 529 able account, which I would over invest in. They have tremendous flexibility compared to purely educational 529 plans.
I didn't even know those existed. Now I have to go do some reading. IN which case, that looks like a good idea as it gives more flexibility.

Good luck.
"The stock market [fluctuation], therefore, is noise. A giant distraction from the business of investing.” | -Jack Bogle

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