How to Keep Assets for Chronically Ill Patients. USA specific
Forced poverty is built into the United States system of disability support. I could write a whole other post on why this is a barbaric practice that needs to end. But as things stand, this system produces one repeated outcome, pulling middle and upper-middle-class families into poverty. Here's what you can do to fight back.
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SSI and SSDI
When you receive disability benefits it will be under two categories…
Social Security Disability Insurance (SSDI)
Had no asset limit
Requires work history
Requires medical eligibility
Supplemental Security Insurance (SSI)
Is not based on prior work
Has a $2000 asset limit ($3000 if married)
Requires medical eligibility
If your SSDI amount is below the SSI maximum and you meet the asset limit you can receive both.
This guide is aimed at people with chronic illness who generally receive very low SSDI payments and will need SSI.
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What the system wants and you want to avoid
The bureaucratic suggestion of what to do after you get sick simply continues to live as you did before you got sick until you become eligible for benefits. Draining your assets in this way (assuming you are careful) can take years. Then you can apply and downsize to subsidized housing. This has major flaws
-You burn through large parts of your saving on less necessary expenditures
-You are most desperate at the time you apply making rejections (which are unfortunately common) very dangerous
-Your friends or family will likely end up supporting you which drains their savings as well
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What you want to do
As soon as you recognize you will be unable to work going forwards and have been disabled for 5 months:
-Reduce non-exempt assets in your name
-Increase exempt assets, give money to (very) trusted family and friends, or place assets in a special needs trust
-Hire a good disability attorney
Unfortunately, this system punishes those who do not have trustworthy family or friends to give to. Also, remember that there cannot be any sort of legal tie between you and the money so you must have a lot of trust in the person you give to.
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Securing housing
If you have enough equity in your home and/or enough saving to purchase property this is highly recommended as the house you live in will be exempt from your means test. You will not be able to use savings to continue to pay a mortgage due to the $2000 savings limit. Therefore if your mortgage is not almost paid off you should downsize to a home you can fully purchase, remember to consider future accessibility such as buying a ground floor unit and single-story option. If you cannot afford a home you can consider placing whatever assets you have (such as equity from a sale) into a special needs trust a form of irrevocable trust that will not count against your assets. It can be used in the future to pay for most expenses besides food or shelter (utilities and medical bills are allowed).
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Living scenarios
You will want to plan in advance what your living scenario will be. You will get the maximum benefits if you live on your own and are responsible for paying for food and shelter. Living with a spouse causes joint property and the spouse's income will then count against you. Living with others (like parents) can save a lot of money but will cause you to lose about a third of your SSI if you are deemed to be receiving free food and housing ( exceptions available).
Note please see the "How To Get On" amazing guide to all possible scenarios.
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Once on benefits
Once you have qualified for benefits ensure that
-Friend and family know not to ever give you cash without checking with you. You must be careful not to receive any gifts of cash that would increase your assets over $2,000
-If you got sick before age 26 you open an ABLE savings account which can hold up to $100,000 with a limit of a total of $15,000 contributions per year. Note that you should put whatever possible from your back payment into this account to avoid having to spend it quickly.
-If you ever encounter an inheritance you a special needs trust can help you utilize it
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Final tips
-Look into the website www.disabilitysecrets.com reading their full articles is a great place to learn more.
-The blog "How To Get On" has amazing in-depth guides for getting on SSDI, SSI and more specifically for MECFS
-Ensure that your doctor is highly supportive of your disability claim. If not find a new doctor.
-Numerous Facebook groups exist to help you find good doctors, attorneys and generally advise on the disability application process.
-Apply under as many conditions including mental health as possible to maximize your chances. Always fill out the form as you would on a bad day/crash day.
-If you have become disabled before the age of 22 you may be able to get Disabled Adult Child Benefits (see above resources to learn more).
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On privilege
It is important to remember both that all chronically ill patients deserve benefits and healthcare but also that the tips and tricks listed here are in themselves a privilege. Having housing assets and inheritance has been historically and systemically denied to people of color for hundreds of years. Having trusted family or friends to manage savings or assets out of your name is something so many children of abusive households lack. On top of all this, knowledge of exceptions like special needs trusts and ABLE accounts is poorly publicized to take advantage of people's ignorance. In fact, currently, only 1% of disabled people eligible for the ABLE program utilize it. Finally, the fact that our benefits system is so broken that wealthy families often do not apply at all is a form of privilege that also reinforces the terrible quality of the system because when those in power never deal with this bureaucracy they fail to see how inefficient and hypocritical it is. In summary, our benefits system is broken, and most people do not have the means to work around it.
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This guide only scratches the very tip of the iceberg that is applying for disability benefits in the US. (Much less getting into benefits everywhere else) Amazing resources like the sites Disability Secrets and How To Get On or Facebook groups specific to benefit applications for your chronic illness can all help guide you through this process.
However, what I hope this guide does illustrate is that the law is more complicated then if you are disabled and poor you get benefits otherwise you do not. You can be disabled and poor and if you don't know how to navigate the system you will be left out in the cold. You can be disabled and not yet poor and still begin the benefits process and manage to maintain some assets and get on benefits.
So many people fail to pace early in their myalgic encephalomyelitis or MECFS journey because they feel they have no choice but to continue to work. But if working is an unsustainable option causing you to get worse and worse, you are much better off starting the benefits application early and planning for how you will survive on benefits before you completely run out of gas.
Forced poverty is a cruel and horrible part of the US benefits system. Understanding exemptions and what assets you can keep can make a massive difference in your quality of life going forward. It can also help your friends and family to help you without threatening your benefits.
Finally, if you did not know these things when you applied for disability or have already burned through most of your savings or don't have savings to protect know that none of this is your fault. The system is designed to hide this knowledge and drain money from people's personal and social assets to avoid paying people the assistance they deserve. This is a broken system and it needs changing. None of which is your fault.
But in summary, while the US disability system is broken and even more so for persons with ME, the millions missing and #million smore with #longcovid early research and planning can still make a big difference.
