My son occasionally prefaces disclosures with: “I’ve got some good news and some bad news. Which do you want first?” His dad and I usually choose the bad news first, hoping that “I accidentally knocked over the milk,” will be followed by: “But I got a mop and a bucket and cleaned it all up by myself.” Since he’s not quite twelve, his “good news/bad news” scenarios are handled pretty easily. However, I’m not looking forward to hearing that intro once he has his driver’s license.
I scroll through the news and social media at least once daily, doing my best to screen out political nonsense and to pick up on stories that highlight what is happening in the community that visibly includes good news and bad news about people with disabilities, along with their families and their allies. It’s a bit discouraging that it is hard to find a purely “feel-good” scenario that doesn’t at least imply or hint at aspects of the situation that are still challenging and need to be improved. An example is a Facebook post I saw today that included a link to a story with this headline: Girl with Down Syndrome becomes model after doctors told mum to give her away. The story line is the all-too-familiar one of a family that refused to listen to medical professionals and took their child with a disability home to raise rather than committing her to institutional care and now—SURPRISE!—she’s a beautiful young woman with gifts.
For context, I Googled “models with Down syndrome” and came to a list with this title: 43 models with Down syndrome. Forty-three is not a lot of people, considering that more than 3 million people are employed as models in the United States alone, according to the Bureau of Labor statistics. Still, it’s a start. And, it is not just people with Down syndrome, but also people with other disabilities. This little boy is pleased to see in a Target ad a child, who like himself, uses a wheelchair. At the same time, his mother is emotional talking about it in part because she and her son see it so seldom. The good news is that people with disabilities are showing up just a little bit more in mainstream media now. Besides the fact that there is a still a long way to go before people with disabilities are represented proportionally in the media, there is, however, another piece of “not-so-good” news. For people with disabilities, who become gainfully employed in acting or modeling as in other fields, their very success becomes a burden to getting the services they need to live their lives and continue to work.
Recently, the family of a toddler with Down syndrome contacted me. As of 2020, my home state of Illinois requires the parents of child actors and models to open a so-called “Coogan account” for the minor. Such accounts were first required under the California Child Actor’s Bill, passed in 1939 after the parents of one of the first on-screen child stars Jackie Coogan (1914-1984) spent the millions he had earned, which left nothing for him when he reached his majority. Parents are further required to put 15% of the child’s annual earnings into this account. The parents remain the custodians until the child turns 18, at which time the account fully reverts to the child’s direct ownership. The intent of the law is good, but those of us familiar with the financial life cycle of youth with disabilities can see why having one of these accounts is going to require significant additional planning for the family of a child with disabilities, who works as a model or actor.
At age 18, I advise clients with disabilities to apply for Social Security and Medicaid benefits. Some of these benefits, called “means-tested” have asset limits. This is true of Medicaid, which is the gateway to adult services, almost all of which are funded through Medicaid waivers. The asset limit for so-called “Assistance to the Aged, Blind and Disabled” Medicaid is $2,000 for an individual and $3,000 for a couple. The Illinois Medicaid-buy-in for workers with disabilities has a $25,000 asset limit. If an actor or a model is at all successful and, particularly if s/he started young, that Coogan account is going to be over the limit by the time the child turns 18.
If you notice in the “43” article, all of the models and actors were children, youth or very young adults. The Target boy was a young child. So, it’s a likely bet that all of them are still living with one or both parents. But what happens when those parents get older, experience health problems, need long-term care or, ultimately, die? What happens when the now-adult children with disabilities need paid professional support, whether full- or part-time, to help them manage their home life, health, transportation and finances? Will even a very successful actor or model have enough money between income and assets—including in her/his Coogan account—to pay $20,000, $50,000 $70,000 per year or more (depending on need for assistance) to hire and manage personal support workers? And what happens when the now-adult with disabilities becomes a senior, and is no longer working as a model or actor? How will the retired person cover her/his own long-term care?
There are work arounds. Once the child turns 18, s/he could transfer assets from a Coogan account to an ABLE account, but the annual contribution limit for ABLE could mean the process takes years and delays service funding in the meantime. Or the family could create a first party (self-settled) special-needs trust, but those have associated administrative costs and taxes. Beyond Coogan accounts, there are also income considerations, since a person with a disability, who is even moderately successful as an actor or model, may be engaged in the kind of “Substantial Gainful Activity” that precludes qualifying for Social Security or Medicaid, even though the income may wax and wane significantly, depending on the availability of assignments.
Like my son’s disclosures, it seems like every article or social media post that champions the abilities of people with disabilities also highlights the hurdles they face. The good news is that some people with disabilities are trying and succeeding in various fields, including the glamorous ones, like acting and modeling that most of us can only enter in our daydreams. The bad news is, unlike people without disabilities, the more people with disabilities succeed, the harder it is to obtain and maintain the services and supports they need. Ultimately, the last word is good. It is possible to have a career and have services, if you plan well.