Guest Blog

Be Proactive for Disability Rights to Improve our Quality of Life

01 May 2019 by Bonnie Johnson

I recently read an article about a proposed Bill to protect SSI benefits for couples who marry*. I'm glad that people with intellectual disabilities who get Supplemental Security Income (SSI) can finally have the rights to marry without being penalized by having their funds cut. But what about people who have mental illnesses or mild brain injuries who happen to be on Social Security Disability Income and S.S.A.? Would we have the same opportunities as the ones with intellectual disabilities that are receiving SSI? That's what I would like to know. 

Laws need to change for people regardless of their status of disability and what kind of social security they are receiving. There needs to be more flexibility as to the recipient’s wants and needs as to how their trust fund is spent after parents die and leave money for a disabled adult child. What's the use of having a trust fund when too many restrictions apply as to what the recipient can spend or not spend? 

If a recipient spends their money on what they want, they get penalized by Social Security and Medicare. I understand there needs to be rules to protect the recipient from being taken advantage of, but someone shouldn't be penalized just because, for example, they may need to move due to unsafe situations and they need first and last month’s rent money in order to move somewhere safe. I can understand, as a last resort, if someone's check was cut in half for some ridiculous reason. I think that they should provide flexibility for new clothes, bedding, furniture, etc. All we’re trying to do is improve the quality of our lives. When we get money from a deceased relative, we shouldn't be penalized for meeting basic human needs to improvement our lives. 

We should first be a registered voter. We need to register to vote and go out to vote for leaders that have our best interest at hand and are one hundred percent for disability rights. We need to become proactive and write our state senators, governors, and state representatives and let them know taking away our constitutional rights are unacceptable and there needs to be change so we can grow and improve our quality of life.

I feel others need to know what is going on and we need to vote for the right people in office. Vote for change and write the “powers that be” even if it takes numerous years or decades in order for change to finally come to pass. It’s in our power to make our dreams a reality. I feel I need to get this message across for awareness, education, and advocacy for change.

Click for article: Bill Would Protect SSI Benefits For Couples Who Marry