Should I be concerned if my family member with a disability is "too capable"?

An out-of-town sibling expressed concern because his adult brother with a disability has an IQ of 72 and holds a job in which he earns $17.50/hour.  He also believes that he does not meet the Social Security definition of “having a disability” nor the Illinois Department of Humans Services’ definition of “having a developmental disability.”  At the same time, the sibling knows that the hourly-wage job that that his brother works has reduced individuals’ hours and had layoffs in the past and might do so again.  Or, as brick and mortar stores gradually decline, that location might close, and the brother might be unable to relocate if the new assignment is not close to public transportation.  They also know that their brother has challenges managing his health care appointments, and paying bills not set on autopay and updating bills that are set on autopay when a debit card is reissued.  He lives in his own apartment with a roommate who also has some disability. If something goes wrong with the plumbing or an appliance, they both rely on family members to contact the landlord to sort it out.  The concerned sibling said, “I’m afraid that my brother is too capable to get the support he will need when our parents pass away.  I can’t move back to our hometown and my brother has friends there and doesn’t want to move to my location.”

This is not an uncommon concern.  People with intellectual and developmental disabilities are living more independently than they did in past generations.  They have “integrated, competitive employment,” which is just employment where they do much of the same work as people without disabilities and do it alongside people without disabilities, instead of being “employed” at a sheltered workshop.  Some people with intellectual and developmental disabilities live in apartments or condos by themselves or with friends or romantic partners.  Family members and friends provide support—sometimes more support than they realize.  This can work well while parents are active and/or siblings or other relatives are available and for just as long as the employment situation remains stable and familiar for the worker with a disability.  “It feels like playing ‘Jenga®,” explained the sibling, “You build the tower out of the many wooden bricks and make sure it’s stable.  Then each time a brick changes position, you hold your breath and sigh in relief when the tower is still standing.  But you know, eventually, one move could bring the tower crashing down.”

The sibling found some hope when I assured him that things are not as black and white as they seem.  Yes, the Social Security definition of “having a disability,” which one must meet to receive Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) hinges on the person’s disability preventing her/him from doing “Substantial Gainful Activity” or “SGA.”  But even if a person is working steadily, her/his work may not cross the SGA line, which is $1,620/month before special considerations.  For example, if the brother with a disability works only 20 hours per week, he is not exceeding that threshold.  But even if he does, he may have special considerations in the form of “Impairment Related Work Expenses” or “IRWE.”  If the employer provides reasonable accommodations, these may meet the definition of “employer subsidy.”  Both of these situations can reduce the amount of earned income that “counts” towards an SGA evaluation.

With regard to support services funded by the Developmental Disabilities Medicaid Waivers managed by the State’s Department of Human Services, there are actually two ways to meet the eligibility criteria.  If a p.”son has a condition that is onset before the age of 22, but has an IQ that is higher than 70, s/he may still meet the definition of “having a developmental disability”, if s/he has substantial functional limitations in three out of six of these areas of life activities: self-care, understanding and use of language, learning, mobility, self-direction, and capacity for independent living”.  In some cases, when family members and others can be honest about the level of support they provide, they can help their family member with a disability demonstrate that s/he meets the second set of criteria.  It can be helpful, in this regard, to obtain a professional evaluation from a psychologist or a rehabilitation specialist that is familiar with the definition of developmental disability.  We are happy and eager to promote the capabilities of the people with disabilities that live in our communities.  For family members, though, it can be scary to think that their loved one may be “too capable” to get the support services s/he needs.  However, it can help to remember that there is some flexibility within both the Social Security and State/Medicaid definitions of “disability” to consider the level of support that family members with disabilities need to achieve their independence, livelihood, and employment success.

Images are powerful.  Perhaps, instead of using the image of the Jenga® tower, with its potential to collapse at any turn, we could employ Scrabble® imagery in which we help the person with a disability take their resources—their own ability to earn income and live independently as well as having the support services that may be available to them—to make the strongest statement for independence and self-determination they can.  The equivalent of building a word with “X” or “Z” on a triple word score!