Tips on how to get started with future care planning

All parents worry about what will happen to their children after they are no longer around. Parents of special needs have additional concerns: whether the child will have financial security and welfare needs taken care of. Busy with everyday matters, it is common that future care planning for your special needs tend to take the back seat.

When it comes to future planning for your special needs, here’s what you need to know to get started:


What do I ask?

During the planning process, here are some questions to consider:

  • What housing, employment, and daily living and support options are available?
  • Who will support your son or daughter with decision-making (if necessary)?
  • Have I developed a long-term financial plan?
  • Which friends and family members are important to my son or daughter?

Remember: Set realistic expectations. Planning is not a one-time event. It’s an ongoing process.


Who do I ask?

One of the toughest decisions faced by parents is determining who will support your son or daughter with decision making (If necessary). To ease this emotionally difficult process and to prevent further upset, here are some suggestions to assist you in choosing a deputy/successor deputy.

  • People you might consider talking to are extended family, friends, members of your relative’s personal support network, support agencies in your community, and other families in similar circumstances.
  • List your parental values and your aspirations for your child, as well as any religious, financial or cultural concerns. 
  • Choose the person who comes closest to your parenting style and who would guide your child the way you intend to guide them. A child’s aunt or uncle is a common choice, followed by close family friends. It is paramount that you should trust this person’s judgment.
  • Try to select someone close to your age, younger rather than someone older.
  • Becoming a deputy might create additional financial as well as emotional responsibilities. In recognition of this, some parents think of something as a repayment for the deputy they appoint
  • Parents of other children with disabilities are a good source of advice. Because of their common bond some parents choose each other as deputies.


How do I discuss it?

We understand that, for some, it can be difficult to open the conversation of future care planning with your child with with IDD. Try getting into the conversation by asking them what is the kind of life and lifestyle they envision in 5, 10 years later, and gradually segway into a conversation of the support they want to have when you are not around. Below are some suggested conversation pointers:

  • Start the family conversation. Talk to your son or daughter with IDD about how he or she envisions the future and support needed. The more open and forthright your discussions are, the clearer your objectives will be.
  • Talk with other family members about what roles they want to play.
  • Don’t assume a family member’s role. Some family members may want to play a larger role than you anticipate. Others may be reluctant to take on the role that you envision for them. Try to listen and respect each person’s wishes.
  • Develop support networks outside of the family. Learn how other people approach planning for the future.

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