How should the personal planning process address special communication needs?

All unmet needs in a person’s life are important to identify in the personal planning process but communication needs are particularly critical. It may be that a person is able to communicate needs, wants, and desires adequately on his or her own, without additional supports, in which case it is not so crucial to specifically address any communication issues in the personal planning process. However many people with intellectual disabilities or autism face additional challenges communicating their wants and needs, and in those cases it is of the utmost importance to identify and address barriers to communication in the personal planning process.

do Communication barriers play a role in generating unwanted or adverse behaviors?

It has long been known that all persons at whatever level they happen to function in their daily lives strive to communicate in one way or another with the other people who are in their lives. If the ability to communicate is thwarted, or limited so that the so-called “normal” ways of communicating through voice or gesture do not suffice to communicate wants or needs, the person will find other ways to communicate.

There is a direct correlation between the inability of a person to convey his or her discomfort, pain, annoyance, exasperation, boredom, and other similar dissatisfactions with life in the person’s present moment, and “adverse” behaviors exhibited by the person. Thus in any case in which a planning team is addressing adverse behaviors and where communication barriers may be present or are suspected to be present, the team should be asking: “What, if anything, is the person trying to communicate by exhibiting the identified adverse behavior?”

In attempting to answer this question, the team should listen carefully to the direct care workers who are providing care to the person, because these workers often have insights based upon their observations that can be key to identifying triggers to the adverse behavior. They can also be extremely perceptive in picking up seemingly minor changes, such as in the person’s facial expression or mood, that are precursors to the target adverse behavior. Also unless a professional evaluation has previously been done in the recent past, the team should identify as a need a communication evaluation, specific to the person, by a professional. There have been many advances in computer assisted communication technology for persons with developmental disabilities and a competent professional may be able to suggest a system that would substantially increase the person’s ability to communicate.

In combination the professional evaluation and the input from direct care staff can give the planning team ideas and direction in terms of making alterations in the person’s environment, or for the provision of additional training for staff in the person’s idiosyncratic style of communication, that when implemented eliminate or decrease the person’s adverse behavior.

Are there special rights for persons who are both deaf or hard of hearing, and also have intellectual disabilities or autism?

Yes, Maine law does contain provisions that entitle persons who are deaf or hard of hearing and who also have intellectual disabilities or autism to special services. These services must include, but are not limited to, appropriate assessments, interpreter services in American Sign Language, training for direct service staff in American Sign Language and deaf culture, specific residential options for persons who are deaf or hard of hearing, the placement of telecommunication devices in residences and places of employment or other community-based services, and support for the person’s family. (34-B MRS §1218(2)) Each regional office within the Department of Health and Human Services must have at least one person who is proficient in American Sign Language and each regional office must identify a person who is responsible for the coordination of deaf services in that region. The personal planning team should identify any needs that a person may have in these areas and work with the regional office designee to insure that these needs are met.