Some People with Disabilities ARE Prevented from Getting Married and Here’s Why

Today was a historic day for LGBT people as SCOTUS ruled to extend marriage to same-sex couples, and several transgender people born in states like Tennessee and Ohio, unable to marry because of their states refusing to change their gender marker on their birth certificates. I am celebrating for all my friends who now have the right to marry, but I cannot celebrate for myself, because I still cannot get married.

I shared the work I have been doing over the past two years, to spread marriage equality to people with disabilities on Facebook, reminding people that our work is not done if we want marriage for all. It received a firestorm of both criticism and support. I would like to clear a few things up because people seem confused about the issue. I understand it better than most, so let me try to answer your concerns, and criticism, and questions.

A banner that  has a blue background with white text that says marriage equality for all, and B will with two gold rings together with the wheelchair symbol

While YES, technically, people with disabilities can get married, SOME face harsh penalties that are so steep they have no choice, but to not get married. This is similar to the argument people who were against LGBT marriage equality used when they said “technically” gay people could get married because they could marry a member of the opposite sex. While TECHNICALLY that was true, that doesn’t mean the law was not discriminatory, unfair, and oppressive. That does not mean gay people had a CHOICE in choosing to marry who they loved. Those people with disabilities affected by this penalty also have no CHOICE in choosing to marry who they love.

This law is a penalty….it ensures those with the most severe disabilities, those that cannot work, those that are working but cannot live without additional supplemental income, or those that require benefits and services only available through programs like Medicaid are forced to make the impossible choice between services…often life saving services, and marriage. I don’t believe that is any choice at all, much like telling a gay person to marry a straight person we have no real choice in whether we can marry.

How do you tell a person to choose between having food to eat and getting married?
How do you tell a person to choose between going to the bathroom and getting married?
How do you tell a person to choose between their medication or their therapy or their wheelchair or their program that helps them to be more independent and self-sufficient and getting married?

The person that makes such decisions is not being given a choice. That choice has been taken from them because invariably they are going to choose life, food, medication, having help doing bodily functions, etc. over marriage. These are NEEDS not WANTS.

For example, if I get married I lose PCA care. If I lose PCA care I don’t have anyone to help me get out of bed and into my wheelchair. I don’t eat, because I cannot feed myself. I don’t go to the bathroom, because I need help getting on the toilet. I don’t bathe, because I need someone to wash me. When I’m having an asthma attack, I would end up dead, because I cannot get to my rescue inhaler without help. How can anyone tell me I have a choice when choosing between living life and marriage?

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.

 a dark blue green background   and cream letters spell out deep call and support marriage equality for people with disabilities.

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.

 A banner with a blue background, wheelchair symbol  together with two gold rings, and the words don't make me is between my love and my health care

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.

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We cannot do this without you.

52 responses to “Some People with Disabilities ARE Prevented from Getting Married and Here’s Why”

  1. Thanks for taking the time to write this. I hadn’t considered this. Most of the people with disabilities I have known were also already retired or had veteran benefits, so I wasn’t exposed to this scenario at all. I’m dumbfounded and could not live with such a choice myself. I will definitely spread the word. Keep up the awesome work ^_^

  2. […] On another note, there is something new I learned today though besides gay rights issues that is just as important. Its the impact of people with disabilities and the federal marriage penalties. Some people with disabilities are prevented from getting married and here’s why:… […]

  3. if a person relies on these services and doesn’t make enough money to afford them when they get married, there shouldn’t be a problem with them still receiveing those services. Since they’d have some additional income, it would be ok to cut some things if they’d be able to afford it financially.

  4. Thanks for providing more detail. I referred to your original Tweet in blog post of my own on a similar theme. In addition to fixing the marriage penalties, what other big victories … big as marriage equality … do you think disabled people should be aiming for right now?

    • I definitely think we should be using this issue to also promote raising income caps, so those who want to and can work are not penalized. I think we should be working on expanding the ADA to include better accessibility guidelines in buildings. We need to work on transportation and encourage the creation of high speed railways, which can be a major benefit if made accessible and affordable. We have so many people living in rural areas who are trapped. We need to address police brutality, especially for those with mental health disabilities, autistic people, and other developmental disabilities, and especially people with disabilities of color. We need to address the disability hierarchy… as it pertains to invisible versus visible disability, those with intersectional minority status, and mild versus severe physical disabilities. We need to find ways to encourage builders to make more homes more accessible, when they are building. They can make unique designs with accessible access, and then we would have more options for living. We need to reform the education system, so people with disabilities are not excluded or mistreated. We need to work in other minority communities to gain acceptance for the people with disabilities in those communities, as so often they are isolated. There is so much work to be done.

      • We also need to clamp down against discriminatory hiring practices against disabled job-seekers. If you’re trying to get a job within your skill set, you shouldn’t get passed over just because you ticked the “yes” box on the “Are you disabled” question that’s on the applications. Instead, replace that question with one that inquires the accommodations needed to do the job. For example, I require an environment with a lower sensory footprint (quiet, not too bright, access to stimming aids) in order to do a job without having a meltdown. I also require headache medicine to reduce the sensory burden that my headaches add to and are caused by.

  5. Marriage? I’m still working on dating and gave up. I have been disabled at the age of 8 and confined to a wheelchair at age 10. I’m 50 now. I agree that being disabled is really problematic with living life on life terms. This is a world for healthy people, if you are disabled, face obstacles every day. My first obstacle each day starts with me hoping in my wheelchair and not falling on the floor. I could go on and on since I have been disabled for 42 years now. Life is not fair and when you are disabled, Fair is out the window.

  6. I feel that people who have disabilities Are treated badly by
    Corporations and business because they see the government doing
    And feel it’s ok for them to do it too. Every one diseases the best equally
    And peniltys should be enforced equally!

  7. @KellyAnnSmith disabled people barely get by alone. no it would not be ok to cut those services when they get married. our costs of living are astronomical. we have a very low standard of living in this country and it needs to stop.

  8. Massachusetts makes this work. People with diabilities who work can buy in to masshealth based on their income level, even if they are married. Other states should try it!

  9. KellyAnn Smith, it isn’t that simple. The monetary limits are set so low that you’d have to be destitute for the government to think you “can’t afford services”. If you make one penny above that limit, you suddenly “can afford services” and ALL of your benefits are dropped.

    I know of a married couple in a circumstance similar to what Dominick is talking about. However, the wife is on Medicaid Waiver, which means that she can be married and (if I remember correctly) the only monetary requirement is that the husband does not have more than $107,000 in liquid assets. The wife in this circumstance spends probably $12k per year on medication and by the time routine hospitalizations and home health care are added, that’s another $100k. So the husband would have to make an additional $112k per year (on top of what he already makes) in order for them to be able to afford all the services she needs.

  10. i am a disable lady & I also have two disable married siblings. I think they should keep there benefits too if they stay married. one of them is having trouble with hers. She works. But her husband who is also disable doesn’t. It’s wrong.

  11. I don’t think that this issue should have any comparison to the recent legislation of same sex marriage. You don’t think that there are any LGBT Americans with disabilities? They would be in the same situation. This unfortunately is an issue of income inequality or being poor in America. This is the true reason for this dilemma. I understand this issue completely. I make exactly $7 too much per month to qualify for Medicaid. This in turn costs me hundreds of dollars throughout the year in copays, prescription costs, hospital visits, etc. I have canceled appointments and procedures because I cannot afford to pay the out-of-pocket expenses. I am having to compromise my health because of seven extra dollars per month.

    Many policies concerning Medicaid vary by state. Conservative states that have not expanded Medicaid (including the state that I reside) have ruined lives and have actually cost people their lives due to lack of health care. We need to be diligent in raising awareness, contacting our representatives, and voting for candidates that are for expanding social services and Medicare.

    Just like the recent marriage equality becoming law throughout the land, it may just take one lawsuit to go to the Supreme court, for things to change with other issues that plague our country. I do believe we should celebrate that our country has finally made a change for the better with same sex marriage, and hope that this trend of progression will continue.

  12. my daughter is a special need girls, shes now 27 but if she get married the SS will take most of it, not as much u cant pay the rent, or food, she has ADD, and she wants to marry, but her bf is working, and hes handicap

  13. and will this of life 2015 u cant find a job, even she can work 4 hours, and take a bus, she cant drive, panic attacks, tryed to…………..



  16. It’s really unfortunate, especially those who have lifelong disabilities. You can get married it’s just your spouse needs to be in a position to fully support you, and you wouldn’t be able to contribute financially to the household. The reason being is most of the government programs are offered as supplements to ones income. In an ideal world we would be financially able to take care of ourselves and families with disabilities without depending on the government, but this life is anything ideal.

    So, to say you can’t get married is an unfair statement and burden to place on us that now can get married. The truth is you are not financially stable enough to live without governmental assistance. And while my heart goes out to you and I would stand with you and petition the government to allow those with permanent disabilities to keep their supplemental income regardless of spousal income. I know the government has benefit caps and income restrictions because these programs are specifically for those in poverty, or below the poverty level.

    I will you the best, get a petition going. I’ll sign it.

  17. Thank you for writing this. This affects me too and I pray for equality for those of us who are young and unable to marry.

  18. Although I agree with the outcome you are rallying for, labeling it marriage equality makes it a case you can’t win. Why? Wording.

    It changes the likelihood of winning the outcome you want to acheive.

    Wording it as a marriage equality issue is discounted without merrit. The case of not penalizing disabled persons who have a demonstrated need, and evaluating that need based on the individual diagnosed with the disability and that person only.

    That is the goal right?

    Unfortunately, having a married status does require the combining of both incomes.. That not only affects disabled people but people in need of any government assistance whether its food, housing, transportation, healthcare, or aid for education. All married people have the same dual income requirements.

    I absolutely agree with the needs of the diabled community being addressed in way that help more in all areas of need.

    However, the way its worded requires disabled individuals to be granted a special status of marriage that does not have to be subject to income requirements equal to other married couples in need. Do you understand?? Im educated in political science and legal affairs, and the intent is irrelevant if the wording makes it in violation of statues and existing case law.

    The cohabitation angle is definitely one that should be ripe for a challenge! Because how can it be proven that two individuals who share a residence are in an intimate/married type relationship or are simply sharing expenses as roommates? Any change in funding or services based on that premise can easily be overcome.

  19. Seems like if it ever went to court the real question would be “Is it reasonable to assume being married means financial support?”. I’m sure the State could successfully argue that it does, but…

    1) When it comes to debts and credit, in some states each spouse is considered independent (assuming assets are not jointly owned).

    2) When you file taxes jointly you are equally responsible for taxes owed, but if one had a past-due federal tax or student loans the spouse can file to be an “Injured Spouse” and not be liable (and still get a tax refund).

    In both of these instances a spouse can avoid being required to support the other. Therefore, one may be able to make the argument that the same exceptions should be applied to the spouses of those with disability benefits.

    • I think that’s what we will need to do…argue that people with disabilities need an exception to the law, due to the massive costs of living with a disability that would not otherwise be the case if the person is able-bodied.

  20. I agree with this! The government took handicaps rights away when they apply for assisstants! It’s not fair for a handicap person to relied on a spouse for financially all the time. Government took my and all other handicaps human rights away. In government mind, government thinks they are handicap human rights because they control everything and support them. THIS IS WRONG! Government don’t use the word “disable” that’s why I’m using the word “handicap.” If you on more then one government programs, you are definitely stuck! Every programs have their own set rules and some overlap others. Permanent and long-term disabilities should be look at and handle differently. The government should no be ripping the rug away from underneath someone wheels when they try to improve their life by working or by merriage. I try my best to be proud of my life and let nothing stop me but government at my door all the time lol I just hope God open his gates despite our sins that we have no control of! I don’t plan on getting marry on earth!

  21. […] Last week, the U.S. Supreme Court passed down a ruling which legalized same-sex marriage in all 50 states. Celebrations erupted everywhere, and everyone changed their Facebook profile pictures to rainbows. The decision was heralded as finally bringing full marriage equality to the U.S. Although overjoyed for the LGBT community, many people with disabilities know that it is not full marriage equality until people with disabilities can marry without restrictions or penalties. […]

  22. I AM COMPLETELY AFFECTED BY THIS. I have been on Social Security since I was 18 (I am now 39), on a form of SSDI called a DAC (disabled adult child), because in addition to my undiagnosed Aspergers (at the time i got it for mental health reasons) my father died suddenly when i was 16, so it’s based on my father’s income. I now also receive Medicaid and am on a Medicaid waiver program. I am also in a relationship, for almost 2 years. We live seperately. He has talked about getting married, and although i am not ready for such a step yet emotionally, I have told him that under the type of social security I receive, I can never marry as long as I am eligible for these benefits. He does work full time (and I work part time but only about 20 hours a month currently), but he couldn’t support both of us, and I would feel very uncomfortable being completely dependent on him. And if things don’t work out (hopefully wouldn’t happen) I would be completely alone with no benefits at all and not be able to get those benefits back. I was unaware until I read this, that “acting like you are married” (which I assume means living together) could put me in jeopardy of losing my benefits.

  23. The Key Problem hindering the Disabled Community are these Key Things.
    1:The Govt Authorities as a Whole, who still treat us as Prison Fodder & Inferior beings.
    2:The Dept Of Health, which makes things worse than what they are.
    3:The way they continue to intentionally Scapegoat us to make us out to be Paedophiles when we arent.
    4:They are happy to accept the Laws that came from God through a Man named Moses, who had a Disability, but in return treat Moses like Crap. So in turn, treat us like crap.
    5:With the Govt Authorities with So much Corruption today, They are Imitating Hitler at his finest in Intentionally Destroying Our lives once again & again.
    6:They Use us as Political Pawns for Sympathy Votes for the Public, yet wont allow us to have our own Political Party.
    7:They Use us as Media Sympathy on Panels, yet we cant speak our Minds concerning of how they continually Mistreat us.

    I could keep on going & going.
    I have grown up with a Disability as well, an 1 of the points i have marked has happened to me.
    I wont name which 1, but my Trust is completely Destroyed in all things Man has bought against us.
    Some days, I just get so sick of living in this Wretched Wicked World.
    I would love to have kids of my own, but this system we live in, it personally aims to destroy us.
    I enjoy History, an reading about it, especially history around ourselves, the Disabled Community.

    Because I find it hard to trust people, I also find it hard to speak to people about my Disability, an Im left getting to know them 1st, to see where they stand, then if i am comfortable enough with them, i let them know, if not, they slip, an i become lonely again.

  24. E, Massachusetts only makes it work so far. Getting insurance is easier than in other states, but MA does not allow spouses to work as PCAs. A bill to change this failed in the house last year.

    If you live in MA, please ask your state reps to support H.70, this year’s attempt to allow spouses to be PCAs.

  25. I’m on disability in a non-US country and similar issues! Here, you can live with a roommate, but NOT a partner/girlfriend/boyfriend or they deduct from your benefits. We can’t even live with the person we love without lying about it. And through disability I get free ambulance rides, I get several hundred dollars of free medication a month, I get my rent and food paid for all of which are necessary.

  26. I think, it’s time people with disabilities got their chance to be able to get married if they want to, just like the gay community

  27. My last husband is an adult survivor 22. This means he was disabled before 22 AND lost a parent before he was 22. I am a disabled veteran at 10% and at the time fighting for SSi, which I now have. He was told almost his whole life he couldn’t get married or he’d lose his benefits, I thought it was BS. So I called social security since I’m college educated. We were placed on hold a lot as this was being researched, with my military experience I said, “Here is MY social security number and these two numbers get married and he not lose his benefits?” Yes we’d have less money as a couple each month, but his best available insurance for social security was not an option to lose for marriage. After another over 15 min hold, with the reminders it was being researched, we were told, that YES! He could marry and keep his insurance. He called his Mom, she coldly said, “Don’t believe them.” I only had about 3-4 years dealing with them as I have 2 disabled sons, so I knew to respect her over 20 years experience. So, again being college educated, thinking of getting news you don’t like or trust, get a second opinion. So we called again, both socials, still long hold, but yes, “As long as a government agency says you’re both disabled he’ll not lose his benefits.” This might be true for both on SSi or maybe even SSD, but he’s an Adult Survivor 22. So, we get married takes a couple weeks to report it. The VERY rude female behind the counter, terminates his benefits on the spot. I’m busy dealing with my own SS issues, that I don’t see him leave. To shorten the story, I try to fix this. Senator McCains office gets a reply that he can take SSi, almost $300 less for the rest of his life and the crappy medical for those that don’t have enough SS credits, assumed to have never put into the system. I also do my homework, if we get annulled, legal for our marriage never happened, his benefits will be restored. On 26 June 2012 I took him to court, the next month he moved in with his Mom and by end of Aug he had his SS back and got his own apartment, he was devastated and not speaking to me. Over time we have tried to get back together, but the USA and SS stole the light of joy from my last husband and I.

  28. I’m Canadian, and it’s very much the same here. If I were to marry, my spouse’s income would be added to mine, and half of our total earnings deducted from my income cheque. Even with the total amount of the cheque, it’s not enough to live on, but the penalties to try and gradually improve ones situation is so severe, that it takes the heart out of people. It’s like they want us off social assistance and magically be able to financially support ourselves, just by getting a job!! In the meanwhile, the economy doesn’t work that way! I know so many people on disability in Canada 1) live in extreme poverty despite social assistance and 2) are unable to marry the person they love, because they are on social assistance.

  29. This also affects parents of children with disabilities. My son was born with Arthrogryposis and the only way he has been able to be applicable for the medical insurance and programs that he needed was because we were so low income because his care required all of my time and attention. If I was to ever marry or even live with someone (according to my local social security office) then that persons income would be counted against my son when applying for benefits. Anyone who has ever been in the system realizes these thresholds and guidelines are not very high. I have a sweet boyfriend who makes a decent living but we’ve had to establish separate households with no intention of ever living as a family b/c there is no way even on his decent living we could afford even just the co-pays and shares of my son’s therapies, surgeries, bracing, doctor visits, medication, etc. So it’s a choice… marry the love of my life or keep my son’s medical team in place. I choose my son’s medical team. But that’s not a choice I believe we should really have to make. I know several other mom’s of kiddos with my son’s disability who are in the predicament. It shouldn’t be this way.

  30. My brother had a medical issues a while back and struggled to get his social security disability check. Fortunately, he was able to go to a lawyer who was able to help him straighten out his issue. He was on disability for only a few years and then was able to get back up on top of things. I really feel sorry for those who deal with issues like that.

  31. Great article Dominick!!!! I think it is absolutely ridiculous that people with disabilities aren’t able to get married. People with disabilities should have the same rights as normal people who are able to marry or same sex couples. I was born with Cerebral Palsy and I want to get married. People with disabilities should not be penalized because they want to get married. Some people who have a disability were born with it. They cannot help it that they have a disability. I am one of those people. It’s not fair that someone with a disability has to choose between getting married and losing their benefits or not getting married and keeping their benefits. Something has to be done about this.

  32. I been fighting this issue along time.i have written to all federal senators asking to help getting this finally done. Now the time to let people with disabilities to get married if two people with same sex can get marry with out any cuts to your benefits,but someone who wants to get marry who has a disabilities will have their benefits is that fair.election time will coming up soon it would be a perfect time to put pressure on our federal officials to get a law that allow people to get marry with disabilities to get marry with out losing their benefits.their are over 1.3 million people live in ohio who has a disabilty.if we all got on board. On one candidate who would support us on marriage issue . that is a start getting this finally done.senator Sherrod brown is on social security committee is someone you should contact.your voice must be heard now the time to get this finally done.

  33. I so agree Michael Rich, why must we be penalized for falling in love, & wanting to marry!
    I have been disabled since “05”, single parent of (1) I get not support! It has been a very rough road, but we (my son & I) have made it 11yrs now! We need to be able to marry, get raises all without loosing anything!! I have wondered how they would like not getting their big raises, nice trips, beautiful homes, & cars!

  34. I lost all my benefits after getting married, even though beforehand I did the research and was told I wouldn’t. But the provincial government changed the cap. It was horrible. We’re now facing mounting debt and had to move to his parents house. Any progress I made physically while we dated has been set back by stress. We were going to have a baby one day but that’s looking farther and farther out of reach.

    Sometimes I think about getting a divorce and being alone so I’ll stop being such a drain on him, that maybe he could move on and find a normal life. But he refuses to.

    I thought this was just me. I’ve had so much guilt about it. I’m literally in tears. Thank you so much for writing this.

  35. thanks for this, I am in this boat and seen little about this online and it feels like nobody cares. It is very cruel and ethically wrong. I am autistic and an adult. I had to be on an adult child plan and literally am treated like a child or my money is gone. I do not live with my parents but met someone and wanted to marry. Not any more since the government treats us like subhumans. If I marry my husband would have to support me. My husband is not even a Us citizen and eastern European. He could not afford this. I would lose all of my money and we would live in the streets. This is really depressing me and I feel like an inferior human being. I guess i can never get married and due to this the person i love will not be able to stay in the US. This triggers depression even more. The truth is people care about LBGT people but nobody cares about disabled people.

  36. My husband and I got married in 2005. In 2011 I became disabled. I was receiving SSI, SSDI, Medicare and Medicaid and food stamps. In 2014 my husband became disabled. We only receive SSDI, Medicare and Medicaid and food stamps. Social security says that we don’t qualify for SSI because we are married. Between the two of us, after deductions, we only receive $1060.

  37. I was unaware of this until recently and I am appalled! I just cannot even begin to comprehend what the government officials/lawmakers where thinking when they wrote and implemented these laws. I am sitting at a Hospice Facility as we speak with two of the dearest friends a person could ask for. He has been bravely fighting cancer for the past 3 years, but he is now on comfort care and could pass anytime. They have been together 27 years and would give anything to have been able to marry, but she is disabled and they are just one of many cases of not being able to do so because they were told she would lose her benefits and he didn’t make enough money to support them both if she lost her benefits, much less afford her insurance and medical expenses it would not cover. Now she is not only facing the loss of her soulmate, but also losing her home and car because she does not make enough money to pay for them and she is not eligible to receive any death benefits as they are not married. I have to ask myself, what kind of world do we live in that would allow this?

  38. If you have been disabled since birth, why arnt you on Medicare? I was born with a congenital heart defect and had to go on disability at 23 after multiple open heart surgeries and a car accident. I applied for SSDI and received an approval the fist time, got Medicare AND Medicaid. I had BOTH until my husband started making too much. I still get SSDI AND Medicare, plus “extra help” that covers all but $1 -$3 of each medication I take.

    I’m NOT saying you are wrong that the disabled community is ALWAYS more screwed than “normal” poor/low income families, BUT why dont you qualify for Medicare???? If you are getting SSDI for more than 2 years, you should also get Medicare.

    The thing that truly upsets me is after being labeled disabled my family went from upper middle class to so poor we couldnt eat without SNAP, food banks ect. It’s gotten better, but we will NEVER be able to provide for our children ANYWHERE near what we could have if I had stayed an able bodied person. We wont be able to save enough cash to EVER buy a house or anything else people consider the “American dream”.
    Our rent is 2xs what a normal mortgage in our area is and we live in “low income” housing. So, if we could save for a downpayment our income would in essence increase JUST by OWNING our house instead of renting. The problem is I would lose important help because my family had a savings, no matter the fact we are trying to save to become more self sufficient by cutting our housing cost in half.

    Being DISABLED in America is a catch 22 at EVERY turn!! If you become disabled it’s almost a FACT that you will become POOR!

    That’s what needs to change!!

    • I do get Medicare. I only qualify for it through something called the adult disabled children program, and if I get married you automatically get kicked off that program unless your partner is also on that program. My partner is not on Medicare at all nor does she qualify. If you are under 65, the only way you qualify for Medicare is through a parent who has died or retired. My father died. So, not only what I lose Medicare if I married, I would also lose my Medicaid. My Medicaid is more important because it’s the only thing that pays for home and community-based services. I can’t live without those. They are more important than my medicine. Medicare does not offer home and community-based services.

  39. My husband and I lived in a partnership for the first 10 months of our marriage so he would not lose his benefits. Then we got legally married so we could move to Europe, as he was working freelance for an online company, but he needs 24-hr care. So I’ve been caring for him by myself the last 3 1/2 years. Life is really limited, living like this. Now we have to move back to the US because he lost his job, partly due to disability. We’re married, so for the state we go back to, we have to earn only enough to be barely out of poverty in order for him to qualify for PCA assistance. It’s incredible how little sense there is to the rule. Essentially you have to be receiving SSI or another government financial aid package monthly in order to qualify for 24/7 PCA care that could cost upwards of $200,000 or more in one year. We want to work, and we’re willing to contribute to PCA care costs, but if we work and earn, say, $60,000/yr, we would still get ZERO assistance for PCA costs! It’s mind-boggling how these rules keep disabled people, their spouses, and their families in minimal subsistence situations. People with disabilities who are able to, want to have the chance to achieve and reach for financial stability, like everyone else. But you’re either stuck behind and receiving benefits or incredibly rich and able to fund yourself. There’s no in-between.

  40. I was married recently; my wife is slow mentally. We eloped; the family had a fit and sent DHS after us. She was forcefully removed from our home and sent out of state to live with relatives. Our marriage was annulled with no imput from me. I love her dearly…what the hell?

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