[This is a continuation of my comments to the Michigan Department of Community Health on proposed changes to policy on Self-Determination]
People who have DD are by definition severely disabled, having disabilities that are chronic in nature and that adversely affect at least three areas of “major life activity”. Nevertheless, people with DD encompass a broad range of abilities, needs, preferences, and desires. This makes it essential to consider the needs of each individual rather than basing decisions on generalizations, political expedience, administrative convenience, or rigid ideological theories.
Most, though not all people with DD, have cognitive impairments that affect their judgment and ability to understand or communicate decisions for themselves, while others may have physical disabilities that place no limits on their ability to think for themselves and make their own decisions. There are many individuals with DD who have complex behavioral problems that interfere with judgment that can jeopardize their own safety and well-being if these problems are not recognized and taken into consideration. Others have abilities that compensate for cognitive or behavioral problems in such a way as to make them capable of making most, if not all, decisions for themselves.
The presumption in the proposed Guideline is that individuals will direct the provision of services and allocation of funds by communicating their own preferences and agreement with the plans for implementation of these arrangements. Many people with DD, however, have difficulty expressing themselves and their communication may be easily misinterpreted. If a person answers, “Yes”, to every question that is put to him or her, it would be wrong to interpret this answer as a definitive expression of a preference or choice. If an individual’s judgment is impaired, as when a person makes decisions impulsively and without reflection, others need to take into consideration the safety and welfare of the person before making this the basis for an important decision. Some people with developmental disabilities are so eager to please that they will agree to almost anything, another reason to proceed cautiously before coming to an agreement on a plan of services. Others, like my sons, are unable to communicate in any specific way.
My two adult sons are at the more severe end of the spectrum of people with DD. They function at the level of infants 6 -12 months old, a fact that in no way diminishes their worth as human beings or their rights to legal protections when they lack the capacity to exercise their rights on their own behalf.