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In 2005, a group of attorneys, a physician, and professionals in the developmental disabilities field worked to create a training program (“Informed Consent for Medical and Psychiatric Decisions: What You Need to Know”) directed primarily at staff of provider agencies licensed by the Maryland Developmental Disabilities Administration (DDA). In cooperation with, and building on the efforts of that group, seven Prince George's and Montgomery County provider and resource coordination agencies, partnered to facilitate development of a curriculum to teach individuals with intellectual disabilities how to use basic decision-making skills in order to be more involved in their healthcare.
With a one-time-only small grant from the Maryland Developmental Disabilities Council and a combination of cash and in-kind contributions from each partner, a team of self-advocates, with assistance from consultant P Sue Kullen, created the “My Health–My Decision” (MHMD) training module, along with an agency guide and a workbook for participants. An instructor guide and additional resources were subsequently developed. The key to MHMD is that self-advocates present the material, and the content includes activities related to basic decision-making skills as well as health care planning and selecting a Health Care Agent.
In monitoring the MHMD project, we interviewed trainees and learned that, through no fault of their own, untrained staff and family members sometimes presented a barrier to application of the skills introduced. We discovered that both groups (staff & family support) were generally not prepared to give needed assistance to the individuals they support because they were unaware of the decision-making options.
Some physicians and hospitals have required surrogate decision-makers, or even legal guardians, when informed consent is required for diagnosis and treatment of someone with intellectual disability. While this may be necessary in some instances, given the necessary training and/or support, many such persons are able to give informed consent themselves. As with all of us, the ability to do so may not be determined by their disability, but by the complexity of the decision that must be made.
In cases where a person is unable to make an informed decision, it may be possible for that person to clearly indicate who they trust to guide them or make the decision for them. Selecting the Health Care Agency can lead to improved services and outcomes as a result of maximizing participation, choice, and using the same kind of natural support system that people without intellectual disability typically use.
Our mission is to provide information and education for everyone involved in the life of the person with intellectual disability to ensure that each person has the maximum level of choice and control in the critical area of healthcare services.
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