Who helps to decide what a child with hearing loss needs? Who helps families manage everything? This is not an easy question. Certainly, in the end, it is parents who have to be the case managers, but are parents prepared to do it? How many parents of kids with hearing loss have information about hearing loss before they find themselves with a child with hearing loss? It is important to remember that more than 90% of children with hearing loss are born into families with no family history of hearing loss.
What does it require to be a case manager?
First, the case manager has to be knowledgeable about hearing loss. Second, the family has to be comfortable with the case manager and the case manager has to have the same goals as the family. For example, if the family has as a goal that the child use listening and spoken language, the case manager must be in line with that goal. Third, the case manager has to know the resources in the community to help the family get what they need. Fourth, when there is a disagreement between providers, the case manager helps mediate. For example, if one clinician thinks it is time for a CI and another does not, it needs to be discussed.
When hearing loss is first identified, the audiologist is the case manager. The audiologist is responsible for the diagnosis and for fitting technology. Until the technology is fit and working well, the audiologist is usually the case manager. Once the child moves into early intervention, the person providing services usually becomes the manager. Unfortunately, not every early intervention provider is knowledgeable about hearing loss. Many speech-language pathologists are trained as generalists, and even if they are trained to work in EI, they may not know about hearing loss. This may mean that they will not have appropriate goals for the infant or that they will not know how to build listening skills.
If children move into a special education pre-school, the staff will usually take over the case management. If the child attends a mainstream pre-school, the auditory therapist or audiologist may still remain case manager. Or the parents may need to take over this role
As kids get into school, the school district may assign someone to take over as case manager. But if this person is not knowledgeable about hearing loss, he or she may not do an ideal job. If there is an educational audiologist in the school or a teacher of the deaf, they are the likely people to take on this responsibility. There will be a speech-language pathologist, but what does that person know about hearing loss? Often not a lot.
Someone needs to watch over everything
I spend a lot of time helping families to be sure their children are getting everything they need. Let’s be honest. Most school districts are having problems with budgets and are not anxious to provide extra services. It often takes an outside advocate who can look at what is happening in the school to make sure that a child is getting what he needs.
We need to look at everything. Is the child communicating well in the classroom? Look at achievement tests, not just the total score. How is the child performing on each subtest? If some subtests indicate weakness, we need to be sure that the child gets tutoring in that area. Does the child have the vocabulary to learn with peers? The teacher of the deaf and hard of hearing in the school (yes, there has to be one) should be doing preview and review of vocabulary and concepts so the child knows what he needs to know and can learn what he needs to learn with his peers.
Maybe someone at the school can do this. But if not, someone from outside the school needs to take the responsibility. Parents need to believe that they can demand the things their child needs and can advocate for them. We as professionals, can and must help them do that.