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The importance of being early:

The plot of the Oscar Wilde comedic play “The Importance of being Earnest” revolves around the romantic advantages that accrue to a suitor with the name of “Ernest”. At the beginning of the story, neither of the two male leads is actually called “Ernest”, but one of them, Jack, has created a fictitious personality with that name, a character who is a charismatic playboy, and the other lead, Algernon, borrows this imaginary identity to impress the lady who is the focus of his affections. Subsequently, both men go to great lengths to claim the name of “Ernest”, even to the point of requesting the local vicar to re-christen them with the new name. All of this because their respective ladyloves have both idealized the fictitious character based, largely, on his name.

In the world of disability benefits and services, which more often than not seems to operate within both its own created “set” and in accordance with stage directions that are not easily accessible to the general audience, it is the importance of being early as well as earnest (though not necessarily Ernest) that is most likely to result in a happy ending. This is because the Social Security Administration (SSA) as well the office that oversees Medicaid in each state as well as the particular programs that fund supports for adults with disabilities each have their own very specific criteria for “having a disability”. In order to demonstrate that one meets each set of criteria, the applicant typically requires extensive evidence of her/his support needs, documented on paper and with the aid of professionals.

Many people with disabilities come up through the special education system. From the time they are three or four until the time they age out of the public school system, generally at age 22, their abilities, limitations, and (most importantly) their need for supports are documented rather extensively in their annual Individual Education Plans (IEPs) and related periodic testing. This means that when they turn eighteen, which is the earliest age that they can apply for public benefits as an “adult”, they have a ready source of up-to-date material they can use to bolster their applications. Most families will see no reason to spend the money to maintain that level of need documentation once the student leaves school. As a result, the longer the student waits between the school leaving date and the date s/he applies for benefits, the less timely and relevant the school records become and the less use they have to support the application.

In addition, many people with disabilities, like people in the general population, continue to learn, mature, and build skills well into adulthood. In order to qualify for public benefits that are based on disability, the applicant needs to demonstrate significant deficits when it comes to 1) her/his capacity for self-care, self-determination, and independent living and 2) her/his capacity to work. Most 18-year-olds that I know, regardless of whether they have a diagnosed disability, need adult prompts and support to manage good self-care and have only limited capacity for self-determination and independent living. Think of the classic college student, who lives on ramen noodles and Mountain Dew, parties when s/he would be better off studying and pulls “all-nighters” to compensate for semester-long procrastination. Moreover, many young adults are still in the process of building the education, skills, and self-discipline they need to obtain and maintain something more than a minimum-wage part-time job. The Social Security definition of “having a disability” requires the applicant to demonstrate “an inability to do any substantial gainful activity by reason of a medically determinable physical or mental impairment…” Many students with disabilities will meet this definition at age 18, partially due to their actual disability and partially due to the fact that they have not yet completed high school and have not yet had much real-world work experience. These same students may NOT meet that definition at age 30 or 40 once they have proved their worth in the workforce. As a result, people with disabilities, who delay applying for benefits, may lose their “window”.

Some families consider that possible development—that the person with a disability will cease to qualify for benefits later on in her/his adult life—as a reason not to bother applying for benefits in the first place. I heartily disagree. I encourage clients to view public benefits for people with disabilities as insurance. They can provide both a supplement to what the family can provide in financial support and also can provide a safety net if, for whatever reason, the person with a disability needs more support than originally expected or if the family’s financial situation changes in an unexpected way due to a divorce, premature disability, extended long-term care needs, or premature death of one of the parents. If one has qualified for disability benefits in the past, it is more likely that one can requalify for them later if the situation demands. Moreover, within the Social Security and Medicaid systems, people, who qualify for disability benefits early on and then later begin to work at a level that might be considered “Substantial Gainful Activity”, are better positioned to access programs that allow them to continue their benefits as disabled workers. It is better, in my experience, to obtain the benefits and use them only for a period of time than to delay obtaining them and face significant obstacles to obtaining them when they prove to be needed after all. An application for public benefits is most likely to go smoothly when the applicant applies right at her/his age 18, when records and documents are fresh and plentiful and when the person has little to no track record as a working, independent adult.

In “The Importance of Being Earnest”, Jack and Algernon quite possibility would have succeeded at love under their own names and characters but in that comedic world, being “Ernest” (though questionably “earnest”), was a key factor in their eventual happily-ever-after. Being early, by analogy, is almost always a key factor in obtaining the public benefits that contribute to a happily-ever-after for your family member with a disability.

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