Costly care
Finding good care should not have to cost a person their dignity.
Back in May of this year, journalist Meagan Gillmore wrote the article “What one man needed for a second chance at life.” The story features an update on Michal Kaliszan, an individual born with spinal muscular atrophy (SMA). Michal first caught public attention through his GoFundMe campaign in 2022 when he tried to raise money for his own home care. SMA is a rare genetic condition in which the muscles throughout the body weaken over time. It impacts Michal’s daily routine and lifestyle in a way that seems familiar to me with our girls; due to the nature of his diagnosis, Michal requires care 24-7.
Few options
Michal’s parents were very involved in his life, and their commitment to his care and wellbeing was also familiar to me with our family. Sadly, both of Michal’s parents died of different cancers. Michal appealed for help, but he was told the only place he could access constant care was a long-term care facility. In his quest to find a sustainable alternative through limited crowd-sourcing and direct funding options from the government, his health and wellbeing were negatively impacted by compromised personal care, resulting with Michal sitting in soiled diapers. He shares in the article that this new undignified normal for him challenged his desire to keep on living.
“The way he saw it, his future had been reduced to two options, both of which he feared: spending the rest of his life in soiled diapers – or becoming like the disabled people he had read about who turned to MAID [medical assistance in dying] because of insufficient home care.”
Not so simple
Though research shows that home care programs and interventions are more cost-saving and as effective as institutional care, finding information about medical assistance in dying – and applying for it – is often easier than applying for care supports in the home. The MAID application is less than three pages long; the information is accessible online. Conversely, our family knows well the exhaustive amount of paperwork, consultations and virtual and in-person meetings required to access (limited) home care for our girls.
What caught my attention in Michal’s article was his reflection that we’ve “created a system where it’s just easier for disabled people to die than it is to keep on living.” Why is it so hard to access help? It shouldn’t have to be that way.
Our girls share a rare diagnosis called Chitayat-Hall syndrome that is closely related to Schaaf-Yang syndrome, also part of the family of rare diseases and conditions. One of my newer responsibilities includes helping to lead the patient and family engagement sub-platform of RareKids-CAN, rare disease clinical trials and treatment network. As I meet caregivers and individuals impacted by rare diagnoses, we talk about our hopes with quality of life and wanting to find community. On account of his vulnerability and direct public approach, I’m thankful Michal has found good consistent care. Home care makes financial sense, but it shouldn’t have to cost a person’s dignity.
