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Asian indian male white collar worker with disability on wheelchair talking to the camera video
  • By Andrew Komarow
  • Posted October 5, 2022

What To Consider When Getting Off Disability Benefits

Not everyone with a disability will need or want to stay on disability benefits. When working, reviewing benefits is a personal, medical, and financial choice that some people are able to explore. One of the most important things about getting off disability benefits is actually doing the work to know what is going to be lost and if there are suitable replacements for what was being received. At Planning Across the Spectrum, we like to help take the guesswork out of these situations with our benefit planning services for the neurodiverse.

Social Security

Turning away from Social Security disability benefits could be just saying goodbye to a cash benefit, or it could be denying future Medicare benefits. We encourage people who are on SSI to work long enough to earn Medicare (24 months of eligible benefits after receiving SSDI benefits from someone’s own work or through receiving from a parent’s Social Security benefit) before turning away from their Social Security benefit.

While the cash benefits are helpful, the medical benefits within the Medicare system are arguably the more important safety net. If employment is lost, someone can apply for unemployment or reapply to be considered for disability benefits. We never assume that someone will always be able to get a new job right away after a transition out of an old job. While the intent is always to be able to work longer at jobs people enjoy, consider when the timing is best. Being just over to lose a lifetime benefit of Medicare would be a hard medical and financial mistake to make.

Medical Benefits For The Neurodiverse

When on Medicare, one does not lose that benefit simply because of earning more or saving more money. If someone chooses not to pay premiums when due, years after the benefits start, they won’t receive the benefit, but it still will not go completely away. Reenrollment can come from losing other health insurance from a change of work or other qualifying life events.

Medicaid benefits are both a safety net for medical insurance and home and community-based supports, when eligible for specific programs in your state or region. Waiver supports can be overwhelmingly meaningful in providing financial support for caregivers, social work, work supports, and other social programming. Our insurance planning services for the neurodiverse can help you determine the best fit.

Addressing Income Limitations When Disability Planning

Both SSI and SSDI have income limitations that limit earned income of an individual who wants to remain eligible for disability benefits. For 2022, the Substantial Gainful Activity amount that is the cornerstone of whether someone can earn competitively is $1,350 a month. But those income earnings can be managed. In the earliest years, any income earned by a full-time student is excluded from being countable due to the Student Income Exclusion. In 2022, a student can earn up to $2,040 per month but not more than $8,230 for the year without counting any of it towards their Social Security benefit eligibility.

Later in life when not a full-time student, workers can use Income Related Work Expenses (IRWEs) to further reduce their countable income. Broadly, IRWEs are expenses that enable someone with a disability to continue working, specifically related to their disability and employment. Business owners can reduce their countable income by their business expenses, similar to how they can deduct certain purchases from their taxable income on their tax return. Operating a self-employed business and following the rules of submitting IRWEs to the Social Security Administration can enable disabled adults from living their life by their own design and still be eligible for benefits.

Remember that earning just above the income earnings limits isn’t just going to impact your future income; it will impact your current budget. When earning your income plus Social Security, you got used to a cash flow that became your current standard of living. If you go just above the income earnings limits, not only do you lose your Social Security income, but you also now have less to live on. Many people have to prepare themselves for such a shift in income. That is unless their new income is significantly close to or higher than their previous income plus Social Security. This kind of transition can occur when part-time work turns into a full-time schedule. It can also be when a temporary job turns into a full-blown career with a job opportunity that did not previously present itself in a preferred area of employment.

Other benefits have income limitations, including SNAP and HUD programming. If on these programs, review what is meaningful to you and see if you would be in danger of losing your benefit. HUD will likely have higher income limits than Social Security in most jurisdictions. Remember to review if you have other housing options if you know you will lose your HUD benefit or see if you can be grandfathered into staying where you are for longer. Our government benefit planning services for the neurodiverse can help you understand available options.

Addressing Asset Limitations

SSI and Medicaid have the other challenge of being asset limited. However, when working, it is always important to review your state’s Medicaid program for disabled workers to ensure you aren’t saying goodbye to a benefit you can continue to hold while earning. Programs for disabled workers often not only increase the earnings threshold that would make them eligible for the benefit, but many states are also increasing or doing away with asset limitations altogether. These programs are not automatic and need to be applied for, sometimes within a Medicaid review process, but once established, the benefit may limit an individual’s need to drop the benefit by working more competitively as they wish.

Depending on the person and any Medicaid waivers someone is enrolled in, waiver supports can be life-changing, or they can be underwhelming, not what someone expected, and not necessarily worth the time. This happens when the support is designed for a specific type of person where the individual does not fit that mold or already has other people in their lives who support them in the ways that the waiver supports them. In this case, it is always important to review what happens if those people aren’t around anymore, whether due to moving across the country or through death. Is the person able to find suitable replacements for the ways they need support from others or professionals?

Supports can come in many shapes and sizes, figuratively. They can be parents, friends, spouses, and children. They can be social workers, caregivers, attorneys, financial planners or financial coaches, designers, house cleaners, handy workers, and dog walkers. Some of these resources are free and given out of love, and some are resources that must be obtained through a financial commitment to working with another individual.

No one can do everything well alone

No one truly manages alone. If you are considering what life would be like to move off of government benefits and onto relying on your own ability to support yourself financially through the smart use of your network for things you do need help with, we are so excited for you to do the work to explore how that will work for you. Contact Planning Across the Spectrum for certified neurodiverse financial planning services for unique needs and a consultation that will start you or your loved one on the right path to success!


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