Monday, March 23, 2009

Someone To Watch Over Me - Follow Up Part One

Several weeks ago, I wrote a post about my daughter, Jessica, and questions about guardianship for her. As I mentioned in that post, both the school staff and the staff at our community service board were pushing me to go to court and ask for guardianship.

I was very confused about the whole process, and just the concept of declaring my daughter incompetent left me with a bad feeling. But, my brother had been through the guardianship process, and the school and community service board folks were so adamant that I felt I needed to investigate. That was what led me to a wonderful attorney who helped make everything clearer for me.

Jessica and I met with the attorney, and together we agreed as to the path we would take. I believe we are both comfortable with our choices, and I am anxious to get the process underway. Because I heard from other parents after writing my last post, my attorney has given me permission to share some of her comments with my readers.

It’s a lot of information, so I will break it up into two posts – one today and one tomorrow. I hope it will help other parents, but keep in mind that laws may vary from state to state, or country to country, and anyone with questions about guardianship should contact their own attorney.

Question 1 – Deciding to ask for guardianship means going to court and declaring that your loved one does not have the capacity to make decisions. Is the law black and white on that? Can a person have capacity for some things and not others?

The law is not black and white. Capacity is not an all-or-nothing concept, nor is it an on-off switch that can never be changed. Rather, capacity is fluid – it changes over time and circumstance. For some people it may change from day to day or may cycle as a disability waxes and wanes. When someone tells me that someone lacks capacity, my first question is, “Capacity for what?” because the level of capacity is different for different levels of decisions. For example, the level of capacity needed to make a decision about where I want to work or live is different than the level of capacity needed to make a decision about how to treat a brain tumor. Similarly, the level of capacity needed to sign an advance directive is lower than that needed to make the medical decision the agent may be called on to make.

Question 2 – If my child is of legal age and there is no guardianship in place, and if there was a car accident and my child was seriously injured, would the hospitals and doctors be able to provide information to me without my child’s consent? What would happen if my child were in a coma or was involved in some other way that left them unable to communicate?

Whether a person has a disability or not, there are laws that protect all of us in this situation. In Virginia, we have the Health Care Decisions Act that specifies who can make health care decisions for people when they are incapacitated for one reason or another. Why would a person in a coma be treated any differently if she had an intellectual disability before the coma? Everyone in a coma is just as unable to express their wishes and consent. We also have implied consent which covers situations where there is danger of death or permanent harm if treatment is not given immediately. If I am taken to the ER after a car accident and I am unconscious and in critical condition, the doctors can provide treatment without consent.

Furthermore, we all need to consider what would happen if we are ever in a situation where we cannot make or communicate our own decisions. We all, cognitively impaired or not, need to designate a surrogate decision maker now before that situation occurs.

Stay tuned for part 2 tomorrow!

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