Choosing Care Over Career
In the United States, there are harsh limits placed on disabled people. Limits on how much money they can make, how much property they can own, or savings they can hold before benefits are cut off.
The high costs of caregiving
Caregiving is one of the major expenses that those benefits may cover. And there comes a time in many fully disabled people’s lives where they have to choose between caregiving and career.
Will their career make them enough income to cover their own living expenses? Will it pay for the care they will need throughout the day and sometimes even 24/7 care needs?
Choosing between career and caregiving benefits
Though caregiving is one of the lowest-paid professions in the US, the cost is prohibitively high for individuals just starting into independence and their careers.
Few people would make enough on their own to pay for their living expenses and caregiving out of pocket.
So some people choose to give up their dreams to keep caregiving benefits, while others decide to give up independence from family and stay home to get caregiving while pursuing their dreams.
Giving up a career for care is something non-disabled people don’t think about unless they happen to be faced with it in their lifetimes.
A special kind of grief comes with realizing that your career goals and dreams may be extinguished because of the lack of caregiving staff to help you get in bed or bathe or eat.
Benefits and income limits
When I graduated college with a music degree, I started my own business teaching vocal lessons. I had no idea how much money I could make monthly or yearly before it would affect my benefits.
I am lucky enough to be on social security disability, so my income limits are higher than someone on social security income alone.
I graduated in December 2020 and I have contacted my Department of Rehab office about income limits. I am still waiting on a definitive answer and it’s now August of 2021.
I got a rough estimate of ‘do not make over $940 a month if you want to keep all your benefits’ but no one has gone over my particular situation of owning my own business as was promised to me by the office.
A difficult system to understand
The system is difficult to transverse and complicated to get answers when needed. There are great programs in place to help disabled people become employed.
Unfortunately, not all of them are easy to understand and often they help for a limited amount of time before deadlines for cutting off benefits happen.
I own my own house and vehicle and now my own business. But I have to limit the number of students I take each month.
This is because I need the benefits I have for caregiving in order to stay independent and live my own life without the help of my family.
I have worked hard to get where I am in life, and yet I mourn the limits I have because the Government wants to keep disabled people poor and unproductive if they want to keep their caregiving provided by the Government.
Each State is different and each country in the world cares for disabled people differently. But in the US, you have to decide if a career is worth the loss of benefits and care you may experience.
Choosing to live independently
Personally, I have chosen not to be a full-time choral director or teacher for this reason.
I only do online vocal lessons with limited students each month to prevent myself from going over the magical income number. I choose to keep my provided caregiving and medical benefits.
The loss I feel in giving up my dream of being a full-time teacher is something I am willing to endure so I can live independently which has always been my main goal in life.
Have you, or someone you know been diagnosed with SMA?