Our capacity assessment journey.

In any situation where an adult is unable to make decisions about their personal care, or property and finances, a formal assessment must be completed by a trained assessor to determine capacity. In cases when an adult is incapable an alternate decision maker must be appointed by the courts. So in essence, as Matthew’s mother and primary caregiver, I need to apply to the courts to be allowed to continue to care for my child with profound disabilities. The fact that there is no one else to care for my child is an ironic twist to the narrative.

I totally get why capacity assessments MUST be completed, and why they matter. The ability to make decisions about care and finances are very individual and highly nuanced. Unlike the thinking of the past, capacity is not clearly linked to diagnoses or age. Just because some has, say, Down sydrome, does not mean they are incapable. It is necessary for trained assessors to ensure that only people who are truly incapable have alternate decision makers acting on their behalf.

Capacity assessments are often completed in situations of progressive illnesses that impact cognitive function, such as dementia. They are also necessary when an adult has a disability or mental health challenge that intermittently, or chronically, challenges their ability to effectively manage their finances. These situations are particularly challenging because there may be stretches of time that an individual CAN manage their finances, but other times when the person is incapable and requires support for their own protection. In these situations capacity assessments are crucial, and often fraught with challenge, because denying an adult the ability to manage their personal care or property is a big deal.

And then there are situations like ours. Matthew is incapable of self-direction, and always has been. Despite years of effort, Matthew does not have basic communication skills and cannot share with people in his world his wishes or desires. That means that for the last twenty years I have been, and for the rest of Matthew’s life I am, his primary decision maker and most important advocate. Which means that it can feel pretty demeaning and demoralizing to spend considerable time, and thousands of dollars, to complete the process to be allowed the right to continue to care for my son. Not only do I need to convince the courts that I am an appropriate caregiver, the process is exclusively deficit-based. Like most processes in the medical and legal worlds, the entire process is designed to emphasize all that my son cannot do, rather than celebrating his gifts and the life we have created. It is difficult not to be dragged back into the grief and loss of those early years when I was coming to terms with Matthew’s extensive medical issues and disabilities.

The former health care professional, and the current academic and strident disability rights activist, completely understands why this process is necessary. My son is vulnerable and I want him protected. As well, there are parents who will enhance their child’s deficits to remain in control of their child’s life and finances. These parents are few and far between, but these parents exist and adult children with disabilities must be protected.

But the caregiving mother in me who has spent twenty years navigating a patriarchal medical and social support system that undermines maternal knowledge and efforts in both explicit and implicit ways, is angry and frustrated. I am tired of feeling constantly evaluated as a mother and caregiver, particularly by people who live and work in sterile offices disconnected from caregiving as a whole. I am aware that my extensive engagement with the legal system – spending months listening to lawyers clinically dissect my life, my body, my decisions, and my child’s body, to support their own particular, self-serving arguments – has translated to these situations being both stressful and deeply triggering.

To add insult to injury, because we have been delayed in completing the process we are living with the threat of the having Matthew’s financial support discontinued until the process is completed. Because Matthew’s care and maintenance is entirely privately funded by a medical malpractice award, this would be nothing short of catastrophic. Matthew receives no publicly financed in-home or social supports. None. His award funds everything – from medicines, to feeding tube and incontinence supplies, as well as nurses and caregivers. To lose those funds would bring all of Matthew’s care to a screeching halt, and threaten his well-being in ways I cannot fathom.

I suppose you could argue that I have been an irresponsible mother. And in my darker moments I heap blame upon myself. It is so easy. Everyone else does. I should have completed the process well in advance of Matthew’s 18th birthday. The powers that be reminded me that there was a sentence in a letter they handed me seven years ago advising me about guardianship at age 18. But seven years ago I wasn’t sure my child would live to 18 – he was so very medically complicated and we were averaging weekly trips to the emergency room. I was spending my time contemplating end-of-life conversations. My son’s financial management at age 18 was the furthest thing from my mind. I was hanging on by my fingernails as a caregiver, and that one sentence got lost in the chaos of the day. Our financial managers protected themselves with that one sentence. It feels like no one cared about truly protecting Matthew, and by extension, me. The irony hurts.


Many parents of adult children do not complete the process for power of attorney and guardianship, and all is well. These are the parents in my community that I had talked to as Matthew’s 18th birthday approached, having completely forgotten about that letter. And honestly, for parents of kids like Matthew where 18 is just a number, adulthood is no different in terms of caregiving than childhood. That’s what it felt like to me.

But, as I have been reminded by the settlement’s financial advisors, most parents do not manage their child’s care with funds from a malpractice award. One of my biggest critiques about the medical malpractice journey, and I have many, is that I never received support or mentorship while navigating the process, nor during the years that followed. Upon the lawsuit’s conclusion, I was handed a large financial award on behalf of my son and basically told to “be ethical”. It does not seem to have occurred to our structured settlement providers, or financial managers, that perhaps they could have offered support and mentorship when my child approached his 18th birthday, and all this stress could have been minimized. To be fair, they haven’t terminated our son’s finances, only reminded me monthly that the possibility looms. Sometimes it feels that the world prefers to stand in judgment rather than offer support.







Published by extremecaregivingblog

Wife, mother, extreme caregiver, friend, knitter, soccer player.

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