Advocate – Expectations

In an earlier post we discussed the importance of choosing the right person or people to be your child’s Advocate when you are no longer around. Whatever plan you have in place for your child once you are gone will only work as well as the individual(s) you choose to implement it.

This post is to help you think through what an Advocate(s) will be doing for your child. What should be the responsibilities and expectations? In short, the Advocate(s) will be doing for your child everything that you are currently doing. These activities fall into three broad categories:

Daily Care: Think of this as ensuring that daily – or weekly – maintenance is being handled. Here is a list of items that might be included in daily care:

  • Monitoring nutrition
  • Monitoring compliance with medication
  • Personal hygiene
  • Attendance at healthcare appointments and meetings

Personal Advocacy: Think of this as chief cheerleader, encourager, puller, and prodder – in short, a good friend.

Institutional Advocacy: Sometimes systems are not as functional as we might like. Every parent I have spoken with has at leas one story of having to fight on behalf of their child. That fight may have been with a new doctor that refused to prescribe the specific medication that was effective for their child. It might have been with educational institutions and lack of compliance with the American’s with Disabilities Act. It may have been with the SSDI process. It may have been with the legal, criminal justice, or incarceration system. It might have been with an insurance company.

These systems can often be complex and byzantine, and working through their dysfunctions requires persistence and tenacity. These efforts can be hampered by an adult child that is not always interested in helping you help them.