Social Security benefits for adult with Down Syndrome?

Non-investing personal finance issues including insurance, credit, real estate, taxes, employment and legal issues such as trusts and wills
Post Reply
Topic Author
illumination
Posts: 672
Joined: Tue Apr 02, 2019 6:13 pm

Social Security benefits for adult with Down Syndrome?

Post by illumination » Tue Feb 04, 2020 11:29 am

I have an adult brother-in-law with down syndrome, and his parents are having health concerns. Also, my other BIL (that is not disabled) has started to become more involved in his finances and has asked for advice.

They have money set aside to care for him in his own standard trust, but honestly, it's been badly mismanaged and continues to be. My instinct over the years has been to "butt out" because mixing finance and family is a recipe for disaster, but I now have genuine concerns that this burden is going to eventually fall on my family and feel compelled to get involved.

What is the criteria for someone getting social security disability benefits but have some assets? For instance, he has a land investment that has been sitting idle for a long time. Does that exclude him from eligibility? He also has a menial job that pays right around minimum wage, maybe a $200 a week. But SS benefits really would be a game changer and his parents have never really done their "due diligence" on this because they always assumed there was plenty of money to take care of him.

Is something like a Special Needs Trust or Able Account the best way to shelter assets so he he can qualify?

thanks for the help

HomeStretch
Posts: 4645
Joined: Thu Dec 27, 2018 3:06 pm

Re: Social Security benefits for adult with Down Syndrome?

Post by HomeStretch » Tue Feb 04, 2020 11:40 am

Consider seeking expert help for advice.

Several of my friends with adult children with special needs have used an attorney and city services to obtain advice/assistance with setting up trusts/ABLE account, apply for conservatorship, obtain social security benefits and track expenditures, succession planning (how will care of adult child work when parents gave passed), etc.

Topic Author
illumination
Posts: 672
Joined: Tue Apr 02, 2019 6:13 pm

Re: Social Security benefits for adult with Down Syndrome?

Post by illumination » Tue Feb 04, 2020 12:09 pm

HomeStretch wrote:
Tue Feb 04, 2020 11:40 am
Consider seeking expert help for advice.

Several of my friends with adult children with special needs have used an attorney and city services to obtain advice/assistance with setting up trusts/ABLE account, apply for conservatorship, obtain social security benefits and track expenditures, succession planning (how will care of adult child work when parents gave passed), etc.
Thanks, I definitely would not approach this as a DIY'er and would engage an attorney that specializes in this.

I guess what I want to know is before I even go down that path, is there a resource in layman's terms of what the eligibility criteria even is? Are these benefits looked at more like "welfare" for people in poverty or instead traditional Social Security benefits like a disability pension that has more to do with his condition?

So if someone say has a trust that's worth $200,000 and makes about a $1,000 a month, is he "probably" ineligible for these types of disability benefits? I really think no one has looked into this and now there are concerns that it may be necessary.

I'm just having trouble online finding the answers. I have also heard some feedback that a Special Needs Trust can be an issue for fulfilling the day to day expenses someone like him would need covered.

musicmom
Posts: 108
Joined: Sat Apr 11, 2015 4:48 pm

Re: Social Security benefits for adult with Down Syndrome?

Post by musicmom » Tue Feb 04, 2020 12:21 pm

Consider seeking expert help for advice.

Now.

How old is the the disabled BIL?
Has he EVER been evaluated or tested, especially before age 21?

We have a wonderful 30 yr old daughter, intellectually disabled from birth. A much more clear cut situation than your BIL.
But still, we have spent her lifetime learning and fighting for supports for her as she cannot advocate for herself.

Resources can be state funded or federal.
Only a special needs attorney can point you in the right direction for BIL in his state.

Our daughter uses a state funded housing voucher to rent a portion of a privately owned home with 2 other special needs young adults.
There is an overnight live in aide, Medicaid funded support services to ensure her safety, meals, and even recreational outings. She receives SSI from Social Security. She earns a few dollars from her work program.

It is very far from the old version of a "group home".
She attends a work day program, evening social groups, participates in special Olympics, goes to community theatre, town pool, library, shopping, restaurants.

We have a special needs trust for her for when we are gone, and an ABLE account as well.
She cannot have more than $2000 assets in her name.
We are her legal guardian.

Your BIL abilities and needs will be different than our DD.
I urge your family to investigate what is available for him. For his sake AND your family's sake.

Our daughter has a wonderful life surrounded by peers and activities important to her.

Wish you the best pursuing this for your BIL.
Please PM me if I can help.

User avatar
MN-Investor
Posts: 449
Joined: Mon May 02, 2011 9:04 am
Location: Twin Cities

Re: Social Security benefits for adult with Down Syndrome?

Post by MN-Investor » Tue Feb 04, 2020 12:35 pm

I'll second the recommendation to involve an attorney specializing in this area.

My husband's brother has Down Syndrome and Medicaid has been paying his housing costs for many years. A dear uncle, with the best of intentions, left him about $100K. Unfortunately, that just kicked him off Medicaid. The inheritance ended up paying for what Medicaid had been paying for, then, when it was gone, my BIL went back on Medicaid. I'm sure that's not what his uncle had intended, but, oh well.
The key to success - Save early, save often, invest well.

musicmom
Posts: 108
Joined: Sat Apr 11, 2015 4:48 pm

Re: Social Security benefits for adult with Down Syndrome?

Post by musicmom » Tue Feb 04, 2020 12:49 pm

IF a disabled person receives Medicaid or SSI, it is critical that family NOT gift the person directly. As with the Uncle above, it will derail the person's eligibility for funding until that gift is used up.

THEN having the funding reinstated is a whole another process that could be avoided.

Topic Author
illumination
Posts: 672
Joined: Tue Apr 02, 2019 6:13 pm

Re: Social Security benefits for adult with Down Syndrome?

Post by illumination » Tue Feb 04, 2020 1:04 pm

musicmom wrote:
Tue Feb 04, 2020 12:21 pm
Consider seeking expert help for advice.

Now.

How old is the the disabled BIL?
Has he EVER been evaluated or tested, especially before age 21?

We have a wonderful 30 yr old daughter, intellectually disabled from birth. A much more clear cut situation than your BIL.
But still, we have spent her lifetime learning and fighting for supports for her as she cannot advocate for herself.

Resources can be state funded or federal.
Only a special needs attorney can point you in the right direction for BIL in his state.

Our daughter uses a state funded housing voucher to rent a portion of a privately owned home with 2 other special needs young adults.
There is an overnight live in aide, Medicaid funded support services to ensure her safety, meals, and even recreational outings. She receives SSI from Social Security. She earns a few dollars from her work program.

It is very far from the old version of a "group home".
She attends a work day program, evening social groups, participates in special Olympics, goes to community theatre, town pool, library, shopping, restaurants.

We have a special needs trust for her for when we are gone, and an ABLE account as well.
She cannot have more than $2000 assets in her name.
We are her legal guardian.

Your BIL abilities and needs will be different than our DD.
I urge your family to investigate what is available for him. For his sake AND your family's sake.

Our daughter has a wonderful life surrounded by peers and activities important to her.

Wish you the best pursuing this for your BIL.
Please PM me if I can help.
He's currently 40, and has Trisomy 21 Down Syndrome since birth, which from everything I have read is an automatic eligibility for SS disability. He clearly has Downs, so I don't see any issue on that front. Where I see issues are, he has a "standard" trust created for him, but I think it's insufficient. But it's definitely over $2,000 in assets, so that will be a real issue.

If this was my brother or adult child, I would have had this figured out decades ago in an attorney's office. I don't really have the "power" to go to a specialist "on my own" and get these sort of things figured out for him. What I was hoping is at least have some background to give them an incentive to have someone knowledgable look into it.

I just don't want to lead them down a path where they get an expensive legal bill and it ends up being a complete dead end.

It sounds like the assets he does have would need to be placed in something like a Special needs trust, so that' probably what needs to be investigated next.

So unless those assets are moved into a special needs trust, he's ineligible for any SS disability benefits if he has over $2,000 in assets? Is that correct? I guess what doesn't make sense is, I know people that have gotten SS disability benefits and they clearly have more than that in assets (a house, car, etc). I'm just not well versed in SS law. I was under the impression this was more for things like Medicaid that had strict criteria on assets and eligibility.

southhavenjen
Posts: 1
Joined: Tue Feb 04, 2020 12:57 pm

Re: Social Security benefits for adult with Down Syndrome?

Post by southhavenjen » Tue Feb 04, 2020 1:05 pm

I know a bit about this because my brother is on Social Security Disability (SSDI).

There are two programs for the disabled through Social Security: SSI and SSDI. A good description of these is here:

https://www.ncoa.org/blog/ssi-vs-ssdi-w ... ey-differ/

SSI is for those who don't have enough work credits and is a small amount: ~$700 per month.

SSDI is for those who have enough work credits, and like regular Social Security, the amount is based on how much you earned during your working career. I don't believe there is a problem with him having assets in his name for SSDI. There are, however, asset limits for his MEDICAID. I believe he is not allowed to have more than $2000 in the bank. He is allowed to own a home, furnishings and a vehicle free and clear.

terran
Posts: 1345
Joined: Sat Jan 10, 2015 10:50 pm

Re: Social Security benefits for adult with Down Syndrome?

Post by terran » Tue Feb 04, 2020 2:43 pm

Yes, aside from a personal residence, a vehicle, and personal property (jewelry, TV, etc), he can't have any assets valued over $2000 and receive SSI. He could receive SSDI, on his own record (but it sounds like he has a minimal work history) or possibly on either of his parent's records if they're already retired or deceased, and that wouldn't be limited by assets.

I don't know how or if the money already in a trust can be moved to a specially designed Special Needs Trust, so that's what you'd need to find out from a lawyer.

He could also open an ABLE account (a special type of 529 account that can be be used only for certain things) which can hold up to $100k and while still allowing him to qualify for SSI.

MtnBiker
Posts: 287
Joined: Sun Nov 16, 2014 4:43 pm

Re: Social Security benefits for adult with Down Syndrome?

Post by MtnBiker » Tue Feb 04, 2020 2:45 pm

illumination wrote:
Tue Feb 04, 2020 1:04 pm

He's currently 40, and has Trisomy 21 Down Syndrome since birth, which from everything I have read is an automatic eligibility for SS disability. He clearly has Downs, so I don't see any issue on that front. Where I see issues are, he has a "standard" trust created for him, but I think it's insufficient. But it's definitely over $2,000 in assets, so that will be a real issue.

If this was my brother or adult child, I would have had this figured out decades ago in an attorney's office. I don't really have the "power" to go to a specialist "on my own" and get these sort of things figured out for him. What I was hoping is at least have some background to give them an incentive to have someone knowledgable look into it.

I just don't want to lead them down a path where they get an expensive legal bill and it ends up being a complete dead end.

It sounds like the assets he does have would need to be placed in something like a Special needs trust, so that' probably what needs to be investigated next.

So unless those assets are moved into a special needs trust, he's ineligible for any SS disability benefits if he has over $2,000 in assets? Is that correct? I guess what doesn't make sense is, I know people that have gotten SS disability benefits and they clearly have more than that in assets (a house, car, etc). I'm just not well versed in SS law. I was under the impression this was more for things like Medicaid that had strict criteria on assets and eligibility.
Others mentioned possible eligibility for SSI (supplemental Security Income) and Medicaid. Such programs are means tested and have limits on assets and/or income. You mention SSDI (Social Security Disability Insurance). This is not means tested but must be qualified for both on the basis of disability and someone's past earnings history. (Assets don't need to be sheltered.) If your BIL has sufficient earnings history (I think it takes 40 quarters?), he might qualify on his own earnings record. Or if a parent is receiving Social Security retirement income, he may qualify on one or more parent's earnings records. The SSDI income he could receive is likely larger if based on a parent's lifetime income.

I see terran basically said the same thing while I was typing this.

There are resources online that discuss these topics. For example, this website has an information center that is helpful: https://www.specialneedsalliance.org/sp ... -benefits/

akron1977
Posts: 65
Joined: Wed Jul 01, 2015 6:48 pm

Re: Social Security benefits for adult with Down Syndrome?

Post by akron1977 » Tue Feb 04, 2020 5:05 pm

Contact Social Security, he qualifies for Adult Child benefits if either parent is receiving Social Security benefits and the SSA benefit has no asset test.

musicmom
Posts: 108
Joined: Sat Apr 11, 2015 4:48 pm

Re: Social Security benefits for adult with Down Syndrome?

Post by musicmom » Tue Feb 04, 2020 6:08 pm

^^^^YES

If either parent is collecting Social Security retirement benefits, the disabled BIL should qualify for SSDI based on his diagnosis. This is not need based and will be 1/2 of the retired parents full retirement benefit. Even if parent collected early at 62, disabled son will still receive 1/2 of parent full benefit amount.

Disabled BIL is a DAC in above situation (Disabled Adult Child).
This MAY be contingent on the BIL having previously received SSI.

The SS website is very complete and understandable.
I have also had great success making an appointment at local SS office.

Topic Author
illumination
Posts: 672
Joined: Tue Apr 02, 2019 6:13 pm

Re: Social Security benefits for adult with Down Syndrome?

Post by illumination » Tue Feb 04, 2020 6:38 pm

Thanks to everyone, this was the sort of breakdown I was looking for.

His parents are both on social security and were high earners. In addition, he also probably has 40 quarters of work, but it was part time. Any idea if that makes a difference? These were jobs like working as a grocery bagger 2-3 days a week.

It sounds like SSDI would be the right path at this point to pursue and not SSI. I think anything means tested is going to be a big problem unless a special needs trust is introduced.

Thanks again for the help.

retire2022
Posts: 1198
Joined: Tue Oct 02, 2018 6:10 pm
Location: NYC

Re: Social Security benefits for adult with Down Syndrome?

Post by retire2022 » Tue Feb 04, 2020 8:00 pm

illumination wrote:
Tue Feb 04, 2020 6:38 pm
Thanks to everyone, this was the sort of breakdown I was looking for.

His parents are both on social security and were high earners. In addition, he also probably has 40 quarters of work, but it was part time. Any idea if that makes a difference? These were jobs like working as a grocery bagger 2-3 days a week.

It sounds like SSDI would be the right path at this point to pursue and not SSI. I think anything means tested is going to be a big problem unless a special needs trust is introduced.

Thanks again for the help.
Op a lot of medicaid/medicare rules is contingent on your state where your relatives reside, I would google medicare/medicaid on your state website, with key words like assets, claw back provisions.

My cousin set up their two autistic kids with special needs trust with an attorney. I am not sure what they did exactly because I was not involved in the decision making process.

User avatar
Kenkat
Posts: 6317
Joined: Thu Mar 01, 2007 11:18 am
Location: Cincinnati, OH

Re: Social Security benefits for adult with Down Syndrome?

Post by Kenkat » Tue Feb 04, 2020 8:00 pm

Sounds like SSDI should be looked into. Social Security credits are earned based on income; you get 1 social security credit for earning the defined amount (it was $1360 in 2019) and you can earn up to 4 in a year. He would also qualify for Medicare 2 years after the determined disability date (note that they only go back so far, however) and back pay from that date. The application process is rather intensive; be sure to document everything with doctor reports, etc. He would receive the higher of his own benefit or the parent’s benefit.

MtnBiker
Posts: 287
Joined: Sun Nov 16, 2014 4:43 pm

Re: Social Security benefits for adult with Down Syndrome?

Post by MtnBiker » Tue Feb 04, 2020 8:04 pm

illumination wrote:
Tue Feb 04, 2020 6:38 pm
Thanks to everyone, this was the sort of breakdown I was looking for.

His parents are both on social security and were high earners. In addition, he also probably has 40 quarters of work, but it was part time. Any idea if that makes a difference? These were jobs like working as a grocery bagger 2-3 days a week.

It sounds like SSDI would be the right path at this point to pursue and not SSI. I think anything means tested is going to be a big problem unless a special needs trust is introduced.

Thanks again for the help.
Please read through the following thread. It has a lot of information that may be pertinent to your BIL's case. In particular, the concepts of dual and simultaneous entitlement to SSDI benefits, the need to apply on both parent's earnings records to maximize benefits for the family (combined family maximum), definition of Substantial, Gainful Activity, etc. Every family's situation is different and there are a lot of different aspects that need to be understood in order to navigate through the government benefits minefield. viewtopic.php?t=141350

CFOKevin
Posts: 134
Joined: Sat Jan 04, 2014 4:07 pm

Re: Social Security benefits for adult with Down Syndrome?

Post by CFOKevin » Tue Feb 04, 2020 11:40 pm

illumination,

Great that you are getting involved in this. It sounds like the family's intentions are good but they have failed to structure things in the way that is best for everyone. You should find out whether they have the basics covered (will, trust, guardianship, successor guardian(s)) and get a lawyer to explore whether the current trust can be converted to a Special Needs Trust. It would also be good to figure out how health insurance is covered now.

As noted above, your BIL with Downs should be on SSDI now given his work history. My daughter switched at 21 once she had three years of part-time work on her record. SSDI is much easier to deal with as far as paperwork as the benefit doesn't adjust each month based on earnings. Given that your BIL is 40, one or both parents are probably retired? If that is the case, your BIL will qualify for a Disabled Adult Child benefit on the parent's SS record and will likely get a larger monthly benefit that will supersede what he's eligible for on SSDI.

Getting him eligible for Medicaid/Medicare is vitally important since that coverage is the gateway to a variety of funded adult services. For my daughter, the SSI filing triggered it and we didn't need a lawyer to help. Adult benefits vary greatly by State and we feel lucky to be in Wisconsin now after living in CA and IL earlier in our daughter's life. Our daughter who receives SSDI also receives 40 hours of live-in care each week, job coaching and employment support, respite services and transportation which allow her to live as independently as possible. That is usually what parents want for their children with (and without!) special needs. However, a lack of planning/benefits often results in adult children living in their parents' home until parental health issues (or death) triggers a move-out. In most of those cases, that is a very difficult transition to make at a very stressful time.

Best of Luck,

Kevin

Post Reply