Recently a friend asked if I would write down John's work plan, since he has been experiencing a long stretch of success on the job. It is structured rather loosely as far as goals and objectives, but there are some basic structural components that I have insisted on being instilled. Ever hear of the three "A's" in the 12-step programs? Awareness, Acceptance, and Action. I use these guidelines for parents. They can be applied in employment situations as well.
What sometimes happens with employment programs and plans for folks with FAS/E is that everyone jumps right into making a plan - taking action. People think they are going to apply Behavior Modification to change the person's behavior, based on the assumption that the person can change. People set goals and state expectations based on what they think the person can accomplish without scrutinizing assessments that have already measured abilities and developmental levels. Before a plan of Action can be established, there has to be Awareness and Acceptance in place first.
Awareness of the general nature of FAS disorders (that behavior is mostly a matter of neurological dysfunction - permanent brian damage to the frontal lobes that cannot be reveresed) and awareness of the specific abilities of the person, such as functional abilities (Vineland results) processing difficulties (Woodcock-Johnson IQ test), visual spacial skills (Bender test), keeping in mind that the person might function at a high level one day (or several days in a row) and not be able to function other days, without being able to control functional ability at any given time. Inconsistency is the only rule. Awareness of the problems with "executive functions" of the frontal lobes, such as poor judgment and inability to control impulses. Awareness of the need to be reminded - of rules (each day), to take meds, to stay on task, etc. Everyone who is in a decision-making role or supervisory role needs to have high awareness of FAS in general and of the person's abilities in particular. Training for all is necessary to avoid unreasonable expectations that set the person up to fail, to protect the person from undue stress and stimulation, to prevent "situations."
Acceptance means getting past those unreasonable expectations and assumptions that we all have. "You should know better." "You're just not trying hard enough." "You are being manipulative." "You are lazy." If we find ourselves saying things like this (or even thinking them), then we need to go back to Awareness and educate ourselves or remind ourselves of what we have forgotten: Much of their behavior is not within their control, especially when stressed or overwhelmed.
Action comes with making the plan only after everyone understands what they are dealing with and accepts the person's limitations. Of course it is always nice to recognize their talents and build on those gifts to encourage a sense of success.
If everyone else does their job, then John can do his. John's employment plan includes the following basic ten components:
1) Small work group. Although Voc Rehab funds for a 1:6 ratio, there are usually only 3 or 4 workers in John's group.
2) An outside environment gives the sense of freedom, but is fenced off for safety, well away from the public. This helps with managing the expected outbursts. Inclusion is nice, some might be able to work in a supported employment environment, but respect the needs of those who require the sheltered workshop situation.
3) Medications that work all day long. We switched from Ritalin to Adderall so we would not need to depend on meds being given at work - this was too unreliable.
4) Communication book that is written in everyday, by myself and by the job coach, to keep informed of what's working, what's not working, alerts, unusual circumstances, anything that might affect efficiency at work. This gives an opportunity for frequent encouragement on days when there are no issues to report.
5) Daily reinforcement for appropriate behavior and/or cooperation at work. Depending on the report I get in the communication log, John can receive a certain amount of television time. Whatever is reinforcing can be used, but it needs to be immediate. Next day is too late.
6) Redirection when needed is worded using positive phrases. Instead of saying "No hitting" or "no hugging" use the phrase "Be respectful" or "hands to yourself" and practice the behavior you want to see.
7) "What if" situations can be played out in advance, such as "What if you get angry at your boss? What would be the right thing to do? Let's pretend."
8) FAS education for all staff may need to be repeated. Even I had to go to several conferences before certain philosophies began to sink in. I usually put it in terms of what the experts recommended (like Deb Evensen and Robin laDue) rather than state it as my opinion or my request.
9) Remember your role. Everyone needs to be mindful that if the person were capable of working independently, he wouldn't be in a VocRehab program. He is there because he needs supervision and support, and it is everyone's job to be sure those supports are in place so he can succeed at his job. If the person is not succeeding, then something in the employment plan needs to be changed, we need to "try differently, not harder," as Diane Malbin says. We have to be the corpus callosum and frontal lobes for the person. Another favorite quote is from Susan Doctor and Dr. Clarren: "He will always need an external brain - key words are 'always' and 'external.'" This means that the person might require close supervision. John needs to be monitored closely every minute of his day.
10) Keep priorities straight: Safety and well-being comes first. Working toward independence should not sacrifice safety and health. Pushing too hard toward independence could push them right into circumstances that would destroy any chance at independence. There is no freedom in jail, a mental institution or a morgue.