Autism affects many aspects of a patient’s life, including verbal communication. A majority of those living with autism have delayed speech issues, which can last into their adult years. However, early intervention and 25-40 hours per week of intensive therapy can help a child begin speaking clearly by elementary school.
The therapies are not cheap. One hundred fifty to $300 per session is not unheard of. It’s a relief when private insurance companies pay for even a portion of those services. Since the remaining patient cost can still be insurmountable, it is a welcome break when Vermont Medicaid picks up what is left. Otherwise, the needs of the patient could remain unmet, pushing the family into overwhelming debt, potentially causing the child to miss out on services altogether.
However, even when private insurance agrees to the need for therapy services, services that mean the failure or success of the patient, Medicaid has rules. Unfortunately, these rules advise to start weaning the child off therapeutic assistance after a year, regardless of the determination of therapy professionals. The reasons they give for the decrease are what they call “prolonged treatment” and “prolonged caregiver training”.
In other words, Vermont Medicaid says to treat the verbal communication portion of autism as one would any speech impairment. Medicaid does not take into consideration external factors such as the family situation, the child’s behavior/temperament, interaction style or overall disability level. Instead of by a treating professional, those decisions are made from a desk miles away in Williston, VT.
The “prolonged caregiver training” the Vermont Medicaid office alludes to is the therapy services to which the parents have been exposed. Medicaid expects parents to take over care, which up until that point had been handled by paid, school-trained therapists. Instead, the degreed therapist is allowed to provide no more than simple guidance to those parents a couple times a month.
As stated earlier, in order to be successful, children living with autism need 25-40 hours per week of intensive therapy, for an indefinite period. According to Medicaid’s rules however, after a year of formal services, one or both of the parents must then provide the 5-to-8-hour-per-day therapy, for perhaps the rest of the child’s life.
The paid professionals are expected to take on the role of consultants rather than therapists. The providers who spent two to eight years learning the application of therapy management become outsiders, sometimes doing nothing more than administrating paperwork. The parents, who have no formal training, are not paid to provide these services. On the contrary, in order to assure the child’s success, often one or both parents is/are forced to decrease or cease employment, creating even more burden to an already-strained household. By this logic, just being Mom and Dad (playing with, hugging and loving the child) must take a back seat.
Often, the parents are not warned that any change in Medicaid coverage is looming. Once the supplement is cut and the parents are unable to pay for the care out-of-pocket, therapies are over with until the next event period, which can be weeks or even months later. In the meantime, all the strides that were made with the child are lost, unless the parents provide those hours of therapy services on their own. Even still, when the child does begin visiting again with the therapist, the task of reintroducing the two means time lost that should be spent continuing their much-needed care.
In the end, what the parents hear is the Medicaid professionals telling them, “It’s not our fault you have a child with autism.”