It is a FACT that you don’t even have to be married to lose these services. Social Security can determine you are “playing married” even if you are not legally married to your partner. Social Security can determine eligibility for SSI, SSDI, and can help determine eligibility for Medicaid. They can kick you off services, even if you are not legally married, if they say you are acting like you are married. This is ridiculous and scary for those of us with disabilities who depend on services to survive.
It is a FACT that if we marry, Social Security expects us to become the financial burden of our spouse. If ourespouse is able-bodied,how are they going to have a job and provide services? I require 24-hour care, personally, so if I were to get married, my partner would not be able to work, because she would spend all her time doing my care. We would be destitute. We would lose our home. We would not be able to afford to eat. This can put a huge amount of stress on the person having to do all the care, and the person with a disability may become trapped in a harmful situation, with no way out. If both people have a disability, both of their services are cut. If they both rely on SSI, neither of them will have enough to live, and they may not be able to get Medicaid services essential to survival.
I know many couples with at least one partner who has a disability who are stuck living in domestic partnerships because getting married is not an option.
It is a FACT that Medicaid is the only insurance those of us with home health care needs can utilize for said needs. PCA care is NOT available through ACA insurers. While some private insurances MIGHT offer private duty nursing, many of us do not qualify for nursing.
It is a FACT that some of us who need these services are working. We want to work. We want to contribute to society. We also have to be careful how much we make, because we cannot afford to lose services.
So, if Medicaid is the ONLY insurance we can use to get important life saving services or waiver services that buy us much needed equipment like lifts to get us in and out of bed or certain parts of wheelchairs we need that other insurance will not pay for, we have to follow the parameters to stay on Medicaid. That often leaves many people with disabilities living in poverty. It also limits our job options. Over 80% of people with disabilities are unemployed, and this is one of the major factors as to why.
It is a FACT that this penalty does not just affect people with physical disabilities. There are many people with invisible disabilities…. some are autistic, have mental health disabilities, or have developmental disabilities who simply cannot work because of their disability. This is not just the case for those of us with physical disabilities. In both the visible and invisible disability communities there are plenty of people who can work or want to work, that cannot get hired due to income limits. I want to make it clear that disability does not determine your ability to work or not. I know autistic people who can work and some who cannot, for example. My point was just to point out that there are people with non-physical disabilities who cannot get married, some because they need Medicaid services only available through Medicaid, and others because they can’t work at all and they are unable to survive without SSI.
This transcends gender identity, sexual orientation, race, culture, etc. It can affect anyone with a disability, and maybe it might not be affecting a person right now. However, if their disability progresses, this may become an issue they face, and they may have to end up getting divorced. I know many people who have had disabilities progress or have acquired a disability later in life due to illness or injury, who now need something like PCA services and their ONLY option to get those services is to divorce their spouse. This is because, as I have stressed above, you cannot get married and keep these services. You must choose your health needs or marriage. You simply cannot have both.
It is a FACT that this issue can also affect older Americans. As older Americans require more care, some of them have had no choice but to divorce their partners, if they want to remain in their home and in their community. For those finding new love, marriage is not an option if they need services.
This could affect every single person reading this post at some point in their life. Unless you are a multimillionaire, you should act now, and support removing the penalty before it affects you or someone you love. We deserve the right to get married too, and we should not have to sacrifice ourselves or our lives to do so. Help us make this right.