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Position Paper: Supporting Parent Choice for Children Who are Deaf and Hard of Hearing

12/10/2018

The Position Paper: Supporting Parent Choice for Children Who are Deaf and Hard of Hearing was recently approved by the ACI Alliance Board of Directors. It is an important tool in our advocacy to promote parent choice within the larger context of language development and literacy for children with hearing loss. With this paper, we have been inclusive of the importance of all hearing technologies (not just cochlear implants) as well as the language of the home. 

Click here to read the full Position Paper on this topic

Parent Choice in Early Intervention

11/6/2018

The ACI Alliance works collaboratively with other organizations in the field of hearing loss to ensure families are supported in their choices for their children with hearing loss. There is an effort by a group called LEAD-K to encourage passage of state bills that the ACI Alliance and our collaborative partners feel would negatively impact parent choice. Although we agree that although the system is not perfect, we want to improve the way IDEA is carried out rather than pass state laws that will operate alongside of IDEA. ACI Alliance State Champions and other state advocates are monitoring LEAD-K activities at the state level. 


Our specific concerns with the LEAD-K process are:

· While the proposed model law states that parents have the right to select their child’s language, the developmental milestones document will provide a means to conduct an independent assessment of a child’s language and literacy. This assessment may be different than what is developed by a clinic, which typically considers the unique needs of an individual child. For example, children may be implanted late or have other disabilities or medical issues that will impact their progress at a specific age and require specific services. The LEAD-K milestones will be based upon typically hearing children.

· The model bill states that the milestones assessment may be used in addition to the IFSP or IEP. This could result in a different recommendation than that suggested by the child’s CI or educational team, developed in collaboration with the family. This could cause confusion and difficulty in an IFSP/IEP process that is already contentious for many families. 

· The LEAD-K volunteer advisory committee membership will be selected by a state deafness agency. Given the suggested committee composition in the bill, the membership will likely be dominated by ASL interests.

· The bill language uses the terms ASL and “English,” rather than referencing “spoken language” as a modality. The bill favors ASL in its terminology and its focus on including deaf educators and “experts” who use ASL or “visual supplements.” Although most young children receiving cochlear implants are seen regularly by a speech pathologist who mentors the family and works with the other members of the medical team, there is only one mention of an SLP in the bill language. (“One speech pathologist from spoken English, with or without the use of visual supplements” [of the 13-member ad hoc committee]. There is no mention of including an audiologist or a physician on the state committee.

· There is no discussion of hearing assistance technologies in the language acquisition process. There is no mention of hearing aids, cochlear implants, bone anchored auditory implants, and other technologies that provide access to sound to facilitate language development.

· It may be possible to administer a LEAD-K bill that will be neutral with regard to language approach and parent choice but it will take significant time and effort to oversee the process. We feel such time could be better spent on ensuring that children and their families are properly served as they make their way through the evolving and often difficult process of attaining appropriate clinical and educational support. Few of us providing services to children in clinical or educational settings have the time to participate in these lengthy LEAD-K activities.

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