Finding in-home, quality care is an ongoing and very tiring process for one living with spinal muscular atrophy (SMA). And, as I have learned, there are many contributing factors that make it complex and challenging to resolve. 

I’m funded 70 hours per week of care assistance in the state of Connecticut. I know that some states vary the number of hours given, but they generally tailor it to what is believed to suit your unique needs. Not to sound unappreciative, but for the amount of care I require, 70 hours to live independently is not a survivable amount.

Fortunately, I’m blessed to have parents that make up for the difference the state doesn’t provide. However, not every individual living with SMA has family or friends to help them live sustainably. I know several individuals with SMA who’ve been put into nursing homes because of similar situations mentioned above.

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This upsets me greatly. 

A large contributing factor that’s responsible for the lack of 24-hour care is the minimal salary personal care assistants (PCA) are compensated. Their annual salary is roughly 8 percent above what minimum wage is in my state. My thought is, if PCAs were paid the appropriate amount they deserve, for the required care we need, we might attract more professional and skilled workers.

Read more about treatments for SMA.

The tasks can be arduous, and time-consuming. We require but are not limited to, meal preparation, feeding, medicine administration, toileting, dressing, showering, errands and so much more. Raising the salary might entice certified nursing assistants (CNA) or people with some nursing backgrounds to consider the position. These individuals have a heart for caring for others, but also understand the value they deserve.

But the issue doesn’t cease at the shorted compensation. PCA’s are cheated paid sick-time or any insurance benefits. It only makes sense as to why many of us suffering from SMA cannot find reliable, trustworthy PCAs. It’s attracting individuals who just need “work.”  It often lures inexperienced individuals who view this position as a babysitting job.    

Meanwhile, paying a small fraction over minimum wage and withholding benefits, isn’t going to provide mature, skilled care workers. They’re looking for a secure salary to support themselves and their families, too. And, nothing against the McDonald’s franchise, and their hard workers, but salary should not come anywhere into comparison for what’s deserved to an experienced PCA. Neglecting these provisions leaves me and others at higher risk of theft, neglect, physical or mental abuse, and more. I speak from prior experiences, and stories I’ve heard from friends. 

Another issue I feel it could resolve is the amount of alternating PCAs we have coming in and out of our homes. In the state of Connecticut, only one PCA is allowed to fulfill 40 hours per week, and the remaining 30 hours need to be split up or given to an additional PCA. I don’t understand why care assistants don’t have the option to work overtime if they choose? This option could alleviate many of the stresses those faced with special needs have. 

When we find a caregiver we love and trust, we hold on to them like a fine piece of gold. SMA requires specific, gentle care that takes time, and patience to learn. Having new PCAs coming in and out can be stressful because teaching someone the routine over and over, can get exhausting. It’s a process, and not to mention a time of building trust. If we have a PCA willing to work a 70-hour workweek,  it’s like hitting the jackpot. It makes getting things done more proficiently and anxiety-free. I understand there should be another PCA on backup in cases of emergencies and personal time; however, things run more smoothly when someone knows your detailed routine. 

Lastly, for those of us with SMA who are fortunate enough to travel, whether for work or leisure, PCAs are a must. However, this is where the 24-hour care concern and overtime issues coincide, causing a greater headache. 

Meanwhile, 2 personal assistants are required to travel with me in order to fulfill the weekly hours allotted for the week. Unfortunately, this is an inconvenience and an insufficient amount of hours for what’s required. Like I mentioned earlier, in Connecticut, 70 hours are given for the week, but if broken up into a 7-day week, that’s only 10 hours a day. That’s 8 hours of night shift not accounted for, or an evening shift not considered. If you just calculate the night shift, that’s an additional 56 hours not provided.

Meanwhile, the one cared for, is responsible for compensating the difference for the caregiver(s). This can become very costly, especially if you’re providing the travel funds as well. Personally, it makes me feel guilty for wanting to travel, and it makes me feel that those with rare diseases aren’t viewed equally, wanting to enjoy life as independently and comfortably as anyone else. 

I understand that not everything is black and white when resolving the negligence of the in-home care situations. However, to move forward, one needs to voice that there are special concerns that are overshadowed and need greater attention.  And, please don’t underestimate my appreciation for the care I have now. I know it could always be worse. However, it appears the state would be more willing to spend X amount of dollars putting us in a nursing home, rather than paying skilled PCAs what they deserve. There’s enough stress one carries living with a rare disease, adding these exterior burdens, only makes our situation that much more complicated.  

My hope and prayer are that as more of us advocate for rare diseases, more eyes will take notice, more hearts will be moved, and more hands will be lent. Nevertheless, future solutions are near with a generation eager to become vulnerable and fight for what it deserves.