Full disclosure: I am not speaking from personal experience as a parent of a child with a disability. However, I grew up with an aunt who had Cerebral Palsy, and I am aware that in the 1930s my grandparents were told by the doctor that he recommended ‘putting her way’ and letting someone else care for her. My grandparents declined to follow this advice. This was to my benefit, as I had the privilege of growing up next door to her until I was 10 and then having her visit yearly after that.
In those formative years I learned so much from her. Mainly, she taught me to try everything and don't give up. My aunt was non-verbal. She learned to walk at 12 but had a very sideways curved spine, so she walked with great difficulty and most likely undeclared pain. But this also made her a great naptime cuddler! Her body configuration lead to many stares from adults and questions from children. A tell-tail sign that people were staring was when Milly would start breathing heavily due to being uncomfortable. She didn’t like standing out. I decided at a very young age that I wanted to be with people who were ‘different’ and treat them like they were ‘normal.’
For over 40 years, I have been working with children and adults with either intellectual or physical disabilities, behavioural or learning challenges, and mental health concerns.
I was an Educational Assistant (EA) in the school system, I worked also a Child and Youth Counsellor on a mental health ward, I ran a day program for disabled adults, and I opened and managed a group home for disabled adults. Currently, I support disabled adults and their families in their homes.
Through all of this history, I have gained knowledge and experience from working with children and adults living with challenges as well as through talking to families.Over the years I have chatted with many parents and have heard more than once some version of “Mar, I just wish that my child would die before me, so I don't have to leave them behind.” A lot of these children are totally dependent or even moderately dependent on their parents. They have specific routines they follow and little idiosyncrasies that only their parents know.
When I discovered that creating a workshop would be a requirement for the HHA death doula certificate program, I decided a workshop helping parents create an Advanced Care Plan for their children who were unable to make medical decisions for themselves may be helpful to many people. If the parents die before the child, they can make their wishes for their child's end-of-life and death known. They are able to record what medical interventions they would or would not want for their child, what facility they would like their child to be in when dying, who they would want to be with their child, any spiritual rituals they may want, whether they want their child buried or cremated, where their child would be buried, or ashes spread, etc. etc.
Something else that is very important for parents to share is all the little idiosyncrasies their child may have that others should know about and be sensitive to.
A few examples of particular sensitivities that I take into consideration are:
Do loud noises bother them?
Do they like or dislike being touched?
Do they have foods they like or dislike?
Do they have allergies?
Are they sensitive to light?
How do they react to medical professionals?
What routines do they have before procedures?
What comforts them during procedures like blood work?
If they are nonverbal, how do they communicate fear, anxiety, happiness, etc.?
These routines and reactions become so second nature to parents that they may not think to pass this information on to the person who will be the child's guardian in the event (or eventuality) that both parents die before the child.
Speaking of guardianship, that is another issue to be dealt with. A parent needs to apply to be their child's guardian once the child turns 18. It is advised that this be done as soon after 18 as possible. This entitles the parent to continue to make medical and financial decisions for their child. This can be a $6-9,000 process. The child needs to have an assessment to see what their capabilities are and to verify that they cannot make medical and financial decisions for themselves. Then the parent needs to think about someone who would take over this role when they are no longer around. They also need to have money set aside for the person to go through the legal process of becoming guardian.
Due to the fact that the child is on Ontario Disability Support Program (ODSP) or similar programs in other provinces, the parents need to make sure that their child has money after their death. When someone is on ODSP, they cannot have an excess of money or their ODSP is cut off. There is a Henson Trust that allows parents to put money aside for their child without affecting their ODSP.
There are many things for parents of children with disabilities to consider that other parents would not have to worry about.
I am hoping that the workshop will give parents something to consider that they may not have thought about previously. My wish would be that if they have some good planning for their child, it may alleviate a small part of their concerns upon their own death. I also hope that parents will feel the support from myself and other parents attending the workshop.
This has the potential to be a very informative time but also a very emotional time for parents. I will need to be very cognizant of this and proceed with an open heart and mind.
HHA's Advanced Care Planning for Parents of Children with Disabilities Workshop is being held at two separate times on Thursday, February 8, 2024. You can register to attend from 11:00am-12:30pm EST or from 1:00pm-2:30pm EST.
Marlene Marrow (Mar) is a graduate of HHA’s death doula certificate program with over 40 years of experience working with children and adults with physical and intellectual disabilities, as well as their families.