Mar 22, 2013 0 Share

Unmet Needs

Illustration of graph comparing affordability and desirability with bulls-eye.

It is frustrating to me that even though Cody has Medicaid and private insurance, his needs are still not being met.

It is beyond me as to why the state refuses to pay for speech services for anyone over 21 years of age. They also will not pay for occupational therapy for anyone over that age. While Cody’s private insurance will pay some, we still cannot afford the out-of-pocket expense.

A state regional services representative has visited with us. He provided us with picture cards of feelings, wants, needs and emotions. But Cody is verbal enough that this isn’t going to meet his real needs either.

Much of Cody’s speech is echolalia—meaning he repeats what he hears. But he has demonstrated appropriate communication at times.

At the dinner table for instance, if he is full he will say he is done. When asked if he wants something else he will say “Yes” or “NOT!” We are working with him to say “No, thank you.”

When he bumps into someone while passing in the hallway, Cody has recently started saying “Excuse me” on his own. His prayers at the dinner table and at bedtime he has said perfectly for years.

In addition to echolalia, Cody’s has trouble understanding how some words are used. In his mind if there are “crawdads” there should be “crawmothers” and “crawaunts” and “crawuncles.” If something can be “mandatory” there should be “womandatory,” and “girldatory” as well. Boydatory hasn’t come into conversation for whatever reason.

Cody still needs many prompts to complete tasks and the learning of life skills is a slow process. Bill and I can find it challenging at times to fit teaching life skills in with the rest of our work and family responsibilities. But we are gaining some ground in that area.

Getting control of Cody’s anxious need to pace the floor is another issue that is not being met. This is why a "sensory diet" was recommended to us at the last meeting with Cody’s service coordinator and the director of the new program we are trying to get him into. But for that to happen it would require that Cody have occupational therapy. Here again is an expense not covered that Bill and I cannot afford to pay out of pocket.

I have been struggling to find appropriate online programs that I think would help him to put speech together. As of yet, I really haven’t come up with any that seem to fit his needs.

Why is it that the federal government looks at Cody as an independent adult in the sense that they now will pay SSI in spite of our household income, but the state looks at him as our dependent? I don’t deny that he is and always will be under our financial and family support in every way. Why is it that child support is no longer deemed necessary for someone with a cognitive disability who, although an adult, still requires the care of their family?  I find it impossible to understand the state’s reasoning.

Cody’s service coordinator called me last week to say that getting Cody enrolled in the new day program is still in process. She also said that she is working with the agency’s board of directors to pay for a speech evaluation and up to six therapy sessions, but that was probably the maximum amount they would pay for at this time. I had to send her the doctor’s order we obtained when she initially told us she thought speech therapy would help Cody, because in her words, “Everything needs a doctor’s order.” I faxed that to her the next day but have yet to hear any word as to whether the board has approved or denied the request.

In the meantime Bill and I are going through a trial-and-error process to help Cody communicate appropriately, to help him improve his focus and complete steps to different tasks, and to help him manage his anxiety so that the constant pacing and stimming will stop. Wish us luck!