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It is not ever comfortable discussion what happens after someone dies. But when it comes to the death of care providing parents conversations need to happen and plans must be made. Legal, financial and Medicaid Planning are important, of course, but living a full life is more than providing these core necessities. Life as we know it (and aspire to live it) includes meaning, purpose, identity and being “seen” by the members of your family...whether that “family” is the product of biology or personal selection. This does not happen by accident, especially when one or more members of the family live with intellectual and/or developmental disabilities. The “how” of inclusion needs to be on the table for discussion before the “when” becomes the present.
