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Success brings challenges for people with disabilities

In initial episode of Netflix’s new series, AJ and the Queen, Rupaul’s character, Robert (stage name “Ruby Red”) becomes a victim of his own success. In the ambitious five-year plan, which he proudly shares with the lover to whom he’s lost his heart, Robert explains that he’s going to use his lifesavings of $100,000 to open his own nightclub. The lover proves to be a con man, who takes the money and maxes out their joint credit card. This forces Robert back on the road through the club circuit, pursued by the ex-boyfriend/conman and his boss, Lady Danger, who don’t want their cover blown before they can scam anyone else. Robert is too nice, polite and delicate to survive life on the run were it not for the assistance he receives from his reluctant sidekick. This sidekick is AJ, an Artful Dodger type child, who has no compunction about fast dealing or slashing tires. AJ and Robert/Ruby might have to work through a number or awkward and complicated situations, but because this is a sitcom, both will get their happily-ever-after ending.

One of my most frequent and well-attended workshops walks parents through the process of helping their child apply for Social Security and Medicaid disability benefits, when the child turns 18 and can (or must) meet the adult criteria for “having a disability”. The first criterion is to have a diagnosis. This one is the easier to meet and the one for which almost everyone prepares sufficient documentation. The second criterion is the one on which many applicants stumble, if not fall flat. This criterion makes clear that the disability and any related conditions must preclude the applicant from engaging in substantial gainful activity (SGA) and that SGA is defined in 2020 as the ability to earn $1,260/month or more in gross income. For years, I have illustrated this definition by recalling Chris Burke, the young man with Down syndrome, who starred in the long-running television series Life Goes On. As a man with Down syndrome, there was no question that Mr. Burke had a disability. However, it was entirely probable that he was also engaged in SGA, at least during the active run of the series. Moreover, the earnings from his acting very probably accumulated way above the $2,000($1260?) asset threshold that limits Medicaid eligibility. Medicaid is crucial for most adults with disabilities because Medicaid waivers fund almost all adult supportive services.

Regretfully, Chris Burke has never been an actual client of mine, so his use as an example was purely hypothetical. But in my own practice, I do encounter successful people with disabilities, who have achieved a lot and because of this, require additional planning to get the supports they need in spite of their success. For example, clients have come to me with this situation. An adult child in her/his mid-thirties, has worked consistently since high school graduation. The employer offered a 401(k), with matching so the person contributed. The person lives at home and since s/he has work income, the person never applied for or received Supplemental Security Income (SSI) because the benefit payment would have been small. Since the person could either get health insurance from her/his own employer or stay covered under one of his parents’ employer-sponsored group policies, the adult child never applied for Medicaid. Now, the parents are getting older. They are planning to retire and perhaps have some health challenges. They realize that despite having both a job and savings their adult child will need some additional supports in her/his ongoing adult life, and that they will not be able to provide these supports forever. In order to get the supports, the adult child needs to qualify for Medicaid, since almost all adult disability services are funded through Medicaid waivers. And at this point, that is an uphill battle.

First, even if the person has not worked above the level that Social Security considers Substantial Gainful Activity (defined as $1,260/month for 2020), and if s/he has worked at all close to that level, it is going to be harder to prove that the person could not work over that level. It might be necessary to look for “Impairment Related Work Expense” (IRWE) or Employer Subsidies. IRWEs are items or services that the person needs because they have a disability, needs in order to work, and also pays for out-of-pocket. Employer Subsidies exist when an employer pays the same wages to all employees with a certain job description even though the employee with a disability produces a lesser value of work due to her/his accommodations. An example of this would be if the employee with disabilities was permitted to take longer or more frequent breaks or was not expected to fulfill one of the responsibilities of the role; for example, working the cash register. Both IRWE and subsidies would need to be documented, quantified, and approved by the Social Security Administration, before they could be deducted to reduce countable earnings.

Meeting the income threshold is only one half of the battle to qualify for Medicaid and for waiver-funded services. Remember that 401(k)? If the person is a good saver, s/he very probably has accumulated way more than $2,000 in contributions. Retirement accounts that are not yet in payout status DO count towards that limit. But all is not lost. Illinois and many other states have Medicaid spend-down programs that allow a person to spend down her/his assets and/or income to cover medical expense to the point where they do meet the requirements. Some states have expanded Medicaid under the ACA in a way that raises the income threshold somewhat, and many states have Medicaid Buy-In programs under which workers with disabilities can obtain Medicaid for a small premium, even though their income is substantially above the original Medicaid limit.

In the first season of AJ and the Queen, Robert/Ruby and AJ eventually make if from New York to Texas (their original planned goal), but their lack of resources and healthy fear of the pink-gun-toting, revenge-driven, and slightly psychopathic Lady Danger force them to take a circuitous route. From the beginning of their road trip, they have no opportunity to plan and are very much flying by the seat of their pants and the whole journey is way more stressful than it needed to be. Particularly when your family member with a disability has big dreams, planning early on can help that person to achieve her/his maximum potential while following a straightforward route to the benefits and support s/he needs.

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