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Supporting individuals with Down Syndrome

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End of Life Care

Planning for the future is critically important as many families and caregivers will be looking for ways to stay informed and make proactive decisions that will most benefit their loved one with a disability. Discussing end of life decisions, are not easy but are significantly important to support final wishes. Having a team network of support to help offer guidance during these times will help families and caregivers get through the challenging times. 

Below are some considerations for families as they approach decision-making for end of life arrangements:

  • Identify Who the Medical Decision-Maker Is: Is the person with a disability their own advocate? Do they have someone else in their life to assist with supported-decision making? 
  • Proactively Engage the Decision-Maker: Have you spoken to the person or involved family about end of life wishes? Have you involved the person’s primary care physician? 
  • Tackle the Tough Discussions Early: Spend some time discussing what those top priorities are, before a crisis or significant change in health occurs.