By: Mika Hartman
October is here. As we commemorate both Down Syndrome Awareness Month and National Disability Employment Awareness Month (NDEAM), I can reflect on what I have learned on this journey, share some of the hard truths and hope for a better tomorrow for my son.
Hudson is only 6; however, the dreams I have for him should not be limited based on an outdated mindset or the “no longer applicable” laws that still exist. It is time to look at the success stories of our children and raise our expectations. It is beyond time to put back in the hands of people with disabilities what their glass ceiling is and whether or not they can break it; that is up to the individual. The laws, as written today, hold back our buddies and give society the doubt that greatness can be achieved. We currently live in a “prove you can do more” versus a “sky’s the limit” outcome all while holding back the tools needed to achieve the successes our buddy's desire.
Did you know that if two people with Down syndrome want to get married, they will lose their SSI benefits? Why? Because they would become a two-person income family and exceed the dollar amount cap to receive the benefits. All while many states still offer sub minimum wages to our friends born with an extra chromosome. Many families find themselves fighting against raising wages to not put at risk the benefits that their loved one needs. How backwards is all of this? Penalize an individual who has to work harder at the job they have all while likely not being given the proper training. And let’s not even add in layoffs and who is first to go. And back to the thought of finding love and wanting a commitment in a legal way to be stopped by the government. It’s more than outdated, it’s discrimination.
Last year, I wrote about my hopes for Hudson’s future. I don’t care if he wants to build pizza boxes or run for President of the United States, it is up to me to make sure he is provided with all the tools he needs to be whatever he dreams to be. If he wants to be married, I absolutely want this for him, too. It’s what we should all want for him; to find love, to be loved and to have the choice to give a girl his last name. I more than welcome it, I pray for it.
Two individuals with Down syndrome, that I met years ago, may not have been able to be legally married; however, they did have a commitment ceremony. Heather and Craig Blackburn fight this issue at every turn. They didn’t let the law stop them from being committed in this relationship, but it has stopped them from being able to live together, because they currently live in two different states and moving will change their benefits. Crossing state lines can change so much for our buddies. We are a military family, and I understand this inconvenience all too well. Our families already have enough challenges, it seems like elected officials would help make some things easier on our journey.
Let’s also talk about what SSI provides: it varies per state, but the maximum monthly payment is $943. That is $11 316 per year per person. If a person earns $2 from work, their SSI payment will be reduced by about $1. If a couple gets married, their benefits go to $1,371 average per month for two people. Divide that in two, you see they go to $685 per person and that’s only if they don’t have a job, much less both be working. The system is so backwards; punish two people who want to be married and work, but who need the benefits because they have more health concerns and more needs like glasses, hearing aids, thyroid medication, heart issues, transportation worries, accessible living needs and more.
In celebrating NDEAM, my ask is that you get involved. Learn about the laws that need to be revised and be a voice for the needed change. I ask that you see my son and his possibilities, not his disability. Remove the outdated stigmas and do some research to see what all our buddies are accomplishing today. Help them achieve their dreams, don’t be the one stopping them.
My son is EXTRA; if or when he pops the question one day, I hope the worry of this issue is gone and we can focus on celebrating the future Mrs. Hartman and the next chapter of the life we want for our son….
… that is the life he EXTRA wants and EXTRA deserves!
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