A flower in three stages from wilting to thriving, a small person is taking care of the flower at each stage

Caring For A Loved One

Being paid to take care of someone is a thought that never crossed my mind.

Growing up in a large family and being the oldest of 5 kind of made me Mommy's little helper. It’s a role that I adapted to rather quickly.

My family normalized disabilities

In earlier articles, I spoke about my brother Robby and his severe autism. Growing up with a brother who had a disability normalized disabilities for me. It’s unfortunate that we as a society are not always inclusive. I have always tried to be as inclusive as possible. Obviously, no one is perfect.

Meeting Mike, who charmed me

When I first met Mike I was taken in by his charm and genuine kindness. We became fast friends and the more we hung out together the more I wanted to know him more. 

Eventually, our relationship evolved and, the next thing I knew, we were dating. I have never dated someone with a physical disability before. In order for us to spend time together I needed to assist Mike with some of his care. Because we were dating, it really didn't seem like a big deal to me.

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It was always in the back of my mind on how Mike and I would be able to have a future.

Pennsylvania's state program for caregivers

Eventually Mike discovered the Pennsylvania program where he can hire personal care assistants. I needed to work and I couldn’t work fulltime and also take care of Mike’s physical needs from spinal muscular atrophy. We talked about this a lot. Well when he was approved for the State program it solved that issue.

Unfortunately, we have a shortage of people who work in home health care. The biggest issue is the pay and benefits. Mike's and my situation works because we are in a relationship.

Low pay

However I don’t think I would be doing this for someone I didn’t love. The issue comes down to the fact that the pay isn’t that great. The fact that Mike and I live together and I get paid all of the approved hours makes it work. However if I was just working this as a job for someone who wasn’t a loved one, it wouldn’t really work. I wouldn’t be able to survive on the income.

This is where we need to do better as a society. We need better pay for our home health care workers. Unfortunately not all people with disabilities are in a relationship like Mike and me. Those individuals have a really hard time finding people who are willing to work for them. Not having adequate coverage can mean the difference from being home bound to being able to live independently.

Working to change the system

It’s sad when people with disabilities are forced into a nursing home situation. That is a last resort for anyone let alone a young person who requires extra physical assistance.

So how can you help?  Reach out to your local representatives and make the aware of this problem. Some states are better than others. We all deserve equal rights. I truly believe if we had more financial resources to pay for home health care workers, disabled people would have more options available to them.

How are the resources in your state?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The SpinalMuscularAtrophy.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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