Question 4

Senario: I am working with a high school student with a diagnosis of a learning disability and Attention Deficit Hyperactivity Disorder. She is being served in the special education classroom part of the day. Based on her daily functioning, those of us working with her suspect she has other undiagnosed disabilities, perhaps Fetal Alcohol Syndrome or Fetal Alcohol Effect. Her family minimizes the impact of her disability, pointing out that she’s held several small, part-time jobs, gets around in the community on her own, and earns passing grades in school. They’ve never applied for SSI for the child, but would like to do so because they’re worried she might not be able to earn enough to support herself as an adult, and they think she needs Medicaid.

How can team members help this family apply for SSI? What can they do to increase the likelihood she will qualify, without getting into a battle with the parents over the nature of her disability?

Answer: There have been many times in the past 25 years when I have assisted both students and adults with the mentioned disabilities to apply for SSI. Whenever I have met people who have both learning disabilities and ADD or ADHD, I immediately wonder of there might be Fetal Alcohol Syndrome/Effect (FAS/E) involved. The existence of ADD/ADHD frequently occurs without the person having been exposed to alcohol in the womb, but because the majority of people with FAS/E that I’ve known also had ADD/ADHD, I always like to either confirm or rule it out whenever I can.

The only way to confirm the existence of FAS/E is to find out if the birth mom has a history of having consumed alcohol while pregnant. While this may seem like a scary topic to raise with parents, in my experience birth moms are very anxious to do anything they can to help their children.

When raising the topic with moms, I usually start by letting them know that when their child was born, we didn’t know as much as we do now about the effect of alcohol on an unborn child. Many women didn’t realize they were pregnant when they consumed alcohol. In fact, even today, there are doctors who don’t warn women of the dangers of drinking during pregnancy. Or they tell women they can drink “in moderation” when we still don’t know what level of alcohol consumption is safe during pregnancy. Years ago, before FAS was discovered, doctors even gave women alcohol drips to stop premature labor. We have learned a lot since then.

Many children were born with FAS/E whose moms only drank a few drinks a few times, perhaps to celebrate special occasions like anniversaries, New Year’s Eve, etc. When FAS/E is presented in this light, moms are less likely to feel they are being blamed or condemned. I then let moms know that the reason I’m probing and asking those nosy questions is to find out whether or not there is a chance their son or daughter may have been born with FAS/E. I tell them that the reason I want to know is to be sure their child gets the help and supports they need, and to be equally sure their child doesn’t get blamed for their disability. Teachers who don’t know that a child has FAS/E can easily (and wrongly) conclude that the child’s behavior is willful, “acting out,” or simply “bad.”

When moms understand that I am not judging them, and that their honesty can greatly help us to help their child, they are usually very anxious to do whatever they can to help.

Here’s why all this makes such a difference. If a student does have FAS/E, then one of the disabilities that should be listed on the SSI application form is “brain injury that occurred before birth.” That’s what FAS/E is, a brain injury. With a brain injury, there will likely be a number of neurological and/or emotional indicators that are manifestations of the disability.

For instance, with FAS/E, it is common to see learning disabilities, memory problems, lack of impulse control, ADD or ADHD, emotional immaturity, typical functioning in some areas and abysmal functioning in others, poor judgment, poor safety skills, someone who is easily led, sometimes cognitive disabilities, and more. And yet, because most families have done such a good job, these children are typically very social, pleasant, likeable and wanting to please. They also typically “present” far better than they function. Even when they have a higher than typical IQ, they are often unable to use it. The best way to fully document these uneven and often radical differences in functional ability is through neuropsychological testing, which will show both the strong and the weak areas. For the example in question, even the fact that the young woman has had numerous jobs may be a result of FAS/E, especially if the jobs lasted only briefly.

With or without the existence of FAS/E (or with/without proof of its existence), application for SSI benefits will need to include the following information:

(1) A listing of all the person’s disabilities. (In the example above, I’d cite the learning disabilities, ADHD, probable or confirmed brain injury that occurred before birth, and, if present, emotional immaturity, memory deficits, cognitive deficits, etc.) If someone doesn’t read, list that, and also list any chronic pain they have.
(2) Statements from family, teachers, current/former employers, neighbors, co-workers, etc. that describe the person’s functional deficits, what it’s like on their worst day, what they can’t do, what they need help with, etc.
(3) Hopefully, good neuropsychological testing.

Perhaps the hardest thing for parents and teachers is the need to list and emphasize the student’s deficits, to focus on what they can’t do, to compare them to what would be typical. This flies in the face of our usual perspective as educators and family where we cherish strengths, nurture them, and try to provide supports and accommodations where needed.

This task is not helped by Social Security forms that have questions structured to elicit only positive information about a person. It is important to answer the questions on the forms with all the information they don’t ask for, but which is true and which really describes the disabilities accurately and fully.

Home Page | Customized Employment | SSA | Self-Employment
Collaborative Funding | Articles & Products | Training Calendar
Completed Projects | Staff | Other Links | The Rural Institute