Social Security Unraveled .. sort of ..
When you have a child and are planning for their future, something that is probably not common to think of or most likely plan for is for them to be on social security. This perfect little human comes into our world, sometimes the disability is known right away, sometimes it shows up later.
My son was diagnosed with autism in 2009, he was just turning 10. He had been in the County system when he was only a toddler for delayed speech. Going through the various parts of the County services, school, and medical, there are so many different things. It’s hard to wrap your head around the various services. Some days there were a lot of tears, some days the feeling of wanting to crawl in a hole, some days were better than others. Information comes in a piece here and a piece there. I was encouraged to look into Social Security. That’s when we entered the Social Security world.
My son went through the MN “SMRT” process for the disability determination. https://www.dhs.state.mn.us/main/idcplg?IdcService=GET_DYNAMIC_CONVERSION&RevisionSelectionMethod=LatestReleased&dDocName=cm_00121506
When my son turned 18, I made an appointment with the social security office. At 18 they are considered their own person and the parent(s) income does not count. My son turned 18 and then started his senior year in high school. At that time, his father was still paying child support, and my son was denied because "child support is counted as the child's income and the amount he received passed the Social Security income limit".
When my son graduated in 2018, I brought him back in. He was 19. No child support and no job meant he had zero income. He also had zero assets. They opened the case. I had to provide a lease and our monthly mortgage and utilities bills to the social security office, along with his medical diagnosis. If they need something else, they sent letters asking for documents. They never call you. Anything you send in, make sure and make a copy of.
My county financial worker told me that it’s important to NOT claim them on your taxes as a dependent. This will show they have income and most likely cancel all their services where income and assets are also looked at. Check with your worker, there might be differences at age 18.
There are different “pots” of money to pull from.
SSI (Supplemental Security Income) and SSDI (Social Security Disability Insurance). If a person does not have any work credits, it is solely SSI, this is congress allocated and is very strict on income reporting. SSI will fluctuate depending on how much money is earned each month. You should report the gross wages during the first six days of the month to help prevent overpayments and underpayments. The asset limit is $2000. An asset or resource is counted as:
any cash or money in checking or saving,
stocks or bonds,
two or more vehicles,
cash value of $1500 or more in life insurance policies, or
real estate except for where you live.
This is a brief overview and real situations are much more involved. https://www.ssa.gov/ssi/text-resources-ussi.htm
There is also SSDI which is when you have work credits. The monthly amount is always the same as long as your earnings are under $1300 a month. SSDI needs to know when something changes (starts a job, ends a job, wage, or hours change). There is no asset limit.
Let’s dive in, tackle some myths, and talk about what I didn’t know back then.
Income, what is counted
Social Security looks at your income when they decide if you can qualify and for how much SSI. This comes after the evaluation of disability.
SSI is meant for basic needs (food, shelter, and clothing). https://www.ssa.gov/ssi/
Countable income is if you have other income, the expectation is you spend it on these basic needs. If your countable income is the same or higher than the maximum SSI for a person in your same situation, you do not get SSI. Even if your gross income is higher than the maximum SSI benefit, your countable income might be lower.
Gross income is your earned income before taxes and other deductions are made plus your unearned income.
Earned income is money you get from work (tips, salaries, bonuses, etc). Social Security only counts for about half of your earned income.
Unearned income is money you get from other sources like SSDI, short or long-term disability, VA benefits, profits from trusts or investments, worker's compensation. Social Security counts almost all of your unearned income.
If you work, you usually have more money because your SSI benefit only goes down by about 50% for every dollar you earn.
There is quite the calculation and several steps when counting income. I am definitely not the expert at this. Seek out online calculators or contact your local office for the specifics.
Myth: They can’t work because of their disability
My son has worked at a local grocery store, has had internships, and volunteered. There is definitely a slower learning curve and things might take longer. Skills building, patience, and understanding are key to long-term success.
In high school, they will start to talk about transition and vocational rehabilitation (VR). This is to help the individual prepare for and find a job. Contact your child’s special education teacher or your County’s workforce center.
A job coach is someone that is able to go to the job site to provide on-site training to help with adjusting to the job or skills needed. They are able to be with them to start then back off as needed. The job coach can help with such things as appropriate accommodations, talking to their boss, or finding the best way to complete tasks.
If transportation is an issue, there are door-to-door services such as Metro Mobility, which is an application and approval process. There is a local bus or rideshare service (depending on their abilities and any safety aspects). Your local county would know the best transportation available for vulnerable adults for your county and state. Sometimes transportation can be included on a waiver if the person has one.
An employer cannot discriminate against people with disabilities due to the ADA (Americans with Disabilities Act). Your loved one can be successful with reasonable accommodations. Reasonable accommodations can be different based on each person and each job. No matter the person, there is always an adjustment to a job and this makes it so that the person successfully performs the job. Kind of the idea of having a 504 or IEP in school.
Once a person turns 18 and is getting SSI or SSDI, there is the Ticket to Work program. This is a program that has free services like VR or job counseling, job coaches, training, or placement services. https://choosework.ssa.gov
Myth: If I work, I’ll lose my disability qualification
False! Every three years approximately they will conduct a case review to make sure you are still meeting the disability definitions. These reviews are based on time, not if they get a job. If they are on the Ticket to Work program, these reviews are delayed.
Myth: I will stop getting money when I start working
Partly False! Sometimes an individual just needs a boost to help them reach that next level. Sometimes the disability is more severe. Each person is different. The long-term goal might be to work towards independence. This is a bit more complicated and very common to be afraid of not being able to take care of expenses.
It’s important to know if you are on SSI, SSDI, or both. Rules are different. If you are only on SSI, you will always make more money by working.
SSI
SSI uses a countable income calculation to figure out your monthly total countable income. The calculation is a bit complicated, in my opinion. Countable Income for SSI https://www.ssa.gov/oact/COLA/countableincome.html
If you are under age 22, going to school, and working, you might be eligible for Student Earned Income Exclusion (SEIE). This allows you to earn up to $1930 a month while in school without a benefit reduction. You can exclude up to $7770 over the course of a year. https://www.ssa.gov/oact/cola/studentEIE.html
Impaired related work expenses (IRWE) are disability-related expenses you pay out of pocket so you can work.
The Plan to Achieve Self Support (Pass) program allows you to save your earnings or unearned income like SSDI for expenses related to your work goal. https://www.ssa.gov/disabilityresearch/wi/pass.htm
Income needs to be reported before the 6th of every month. You can open a federally approved investment account like an ABLE Account in order to save money. Able site: https://www.able-now.com/resources/faqs/
SSDI
The trial work period (TWP) allows you to try working while getting the SSDI payment. It consists of 9 trial work months within a 60 month period. If you earn more than $940 in a particular month, it counts as a TWP. If you earn less, it doesn’t count. Both ways, you keep getting your full SSDI benefit until you’ve used all the 9 TWP months within that 60 month period. https://www.ssa.gov/oact/cola/twp.html
You may be eligible for an extended period of eligibility. This begins the first month after your trial work period ends and will continue for 36 months. During this time, if you earn less than the “Substantial Gainful Activity of $1310 per month”, you will get your SSDI payment that month. If you earn more, you will not but you will still be in SSDI eligible status. If your income falls below the substantial gainful activity amount, your SSDI can simply be restarted. https://www.ssa.gov/oact/cola/sga.html
Impaired related work expense - the value of those expenses can be deducted from the gross earnings after the trial work period.
Kind of like the Able account, the Plan to Achieve Self Support (Pass) program allows you to save your earnings or unearned income like SSDI for expenses related to your work goal. https://www.ssa.gov/disabilityresearch/wi/pass.htm
Myth: If my benefits stop, I’ll never get them again
If you are not able to continue to work or need fewer hours, you might think you have to go through that long process all over again.
Some of this is touched on above.
If your benefits stopped because of earnings and you were eligible within the last 5 years, you can use the expedited reinstatement to begin getting benefits. https://www.ssa.gov/disabilityresearch/wi/exr.htm
For SSDI, the extended period of eligibility can help you. It begins the first month after your trial work period ends and continues for 36 months in a row. If you earn less than the substantial gainful activity level, you will get your SSDI payment that month. If you earn more, then you will get a payment. No new application is required to receive your SSDI benefits if your earnings are less than the SGA level.
Myth: I will lose my health benefits
This one is scary. Health is everything and even with employers offering health benefits, some programs are MA dependent. This myth can be a particular high deterrent to wanting to work.
There are many different health options.
MA is the most commonly known form. Eligibility is based on income and sometimes your assets.
MA-EPD - medical assistance for employed persons with disabilities. The working person can pay a premium based on their income and keeping assets under the $20,000 asset limit.
Employer health care - You can enroll in your employer’s health care. If the employer-sponsored plan requires you to pay a part of the cost, MN may pay for some or all of that.
Final Thoughts
All of this information was piece by piece as I picked up knowledge along the way. It’s a very confusing journey. Most decisions are based on the information we have at the time. We do our best as parents to navigate things for our loved ones.
I hope you found this helpful. This can be scary and perplexing. The information on this page is from my own experiences with Social Security, the Social Security website, classes I’ve attended, and the DB101 site. This can be a topic with many moving parts all at once. Reach out to your local Social Security office and/or local County agency for details specific to your individual scenario.