Marriage Equality…For Everyone?

Beth and Frank are deeply in love. They have been in a committed, exclusive relationship for nearly 20 years. They have a wide circle of friends and a wide variety of shared interests. They take pride in each other, encourage and support each other. Their extended families are connected. Their’s is a deep, complex, nuanced, long-term relationship that gives them both great satisfaction. Beth told me once that her greatest dream for her life is that someday, she and Frank can get married. But they can’t get married, nor can they live together outside of wedlock. Beth and Frank aren’t real but their story is true for dozens of couples I know. bill-and-shelley-wedding-photo When the Supreme Court made its historic ruling on same-sex marriage, I celebrated. But then I remembered all those couples I know who are still denied the opportunity to marry and decided the battle for marriage equality is not over yet. And it won’t be over until all the Beths and Franks that I know – and the millions of Americans like them – are afforded the same chance to marry that you and I are. The reason they can’t get married has nothing to do with love or religion or morality and everything to do with money.

Their relationships face the same derision and marginalization that same-sex unions have been subjected to for so long. Then, these relationships are further devalued and disrespected because should these couples decide to marry, they could be subjected to substantial financial penalties on the government benefits they receive – benefits they rely on to live as independently as possible.

As one woman said to me, “No one will let us get married because we’re special.” special-needs_539_332_c1 I’ve done some research to find out why the marriage penalty for people with disabilities even exists in the first place and, on paper, it makes sense: two married people who live together can save money on shared living expenses – rent, utilities, groceries; if those two people also happen to receive government benefits, then those benefits could be reduced because of the savings. In the case of people with intellectual or physical disabilities, each person could receive a 25% reduction in their benefits if they married. If they chose to live together outside of marriage, as soon as their living status was reported, their benefits would be cut.

We say that we want people with special needs to live as independently as possible, that we want to educate them in a “free and appropriate environment (FAPE)” and that we want them to live in the “least restrictive environment (LRE)” and yet we hamstring them at every turn. If they have jobs, they are restricted from earning more than a pittance or their benefits are jeopardized. If their families place money in their names to insure for their long-term care, their benefits can be reduced (unless the family has entrusted this task to a team of highly-skilled attorneys and accountants who set up a Special Needs Trust). If they live in a co-ed group home, they are forbidden from having relationships with the opposite sex out of fear that love might bloom, risking the benefits that pay for their housing.

Raising a child is an expensive proposition. Raising a child with special needs is exorbitantly expensive, even for families with deep pockets and the best insurance. Families rely on the assistance of a complex chain of entitlements and benefits that make it possible for their children to have the therapies, services and assistance they need to live full and rewarding lives. Explaining those benefits goes beyond the scope of this post – partly because I can’t begin to interpret them all and partly because they are so intertwined and include SSI, SSDI, Medicaid, Medicare, Welfare, Section 8, food stamps and others.

People with disabilities rely on some or all of these benefits but in order to retain them, we expect them to basically live in a state of poverty and restrict the amount of money they can earn, save or have in their name. This article from The Huffington Post includes resources and links, along with a simplified explanation of the benefits most at risk for the majority of people with disabilities, should they marry.

My purpose here is to raise awareness of the issue and to ask this question: Should people with special needs be allowed to marry, without any financial penalty?

Justice Kennedy, in writing the opinion for the majority, said of marriage that, “Its dynamic allows two people to find a life that could not be found alone, for a marriage becomes greater than just the two persons. Rising from the most basic human needs, marriage is essential to our most profound hopes and aspirations.” Justice Kennedy also wrote, “Marriage responds to the universal fear that a lonely person might call out only to find no one there. It offers the hope of companionship and understanding and assurance that while both still live there will be someone to care for the other.” couple-with-disability-wed-photo I believe that everyone who wants to be married should be afforded the right to fill that basic human need, to assuage the loneliness of living alone and to have the companionship of a partner, regardless of their IQ or physical limitations.

Granted, adults with special needs who want to get married may require additional support systems to insure their success. Most of the families that I know would be more than happy to provide those support systems to their loved ones…they just can’t afford to take the financial risk.

People may question how two people with special needs could actually live independently, in a state of marriage. A documentary, Monica and David, paints a lovely and realistic picture of marriage for two adults with Down syndrome. This touching film won numerous awards and I highly recommend it for anyone interested in the topic (it can be found here on Netflix).

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More information can be found on the Marriage Equality for People With Disabilities Facebook page. A petition is available on change.org to end the penalty that prevents people with disabilities from getting married. I signed it and I hope you will consider signing it too.

Society can debate about government subsidies and programs, healthcare expenses, the feasibility of people with special needs living independently and other details in abstract all day long. I can’t think of these things in the abstract because when I think of them, my mind immediately goes to all of the Beths and Franks that I know.

I think of adults who love each other and long to share their lives together in a legally recognized union.

I think of adults who deserve the dignity and respect that marriage would bring to their relationships.

I think of adults who deserve to have lives like the rest of us because the only difference between “them” and “us” is a few IQ points…or the way we move around…or the way we communicate.

They” are not people with disabilities…they are people, who experience the full range of human emotions that we all share.

Their” love is no less than our love.

And if #lovewins is true, then everyone’s love should win. 11722330_848694518546662_4909391832293084721_o

9 thoughts on “Marriage Equality…For Everyone?

  1. OMG Ms. Debra, you nailed it again! I love this post. I hope that by the time Abbey chooses to marry, she can choose someone with or without special needs, without her choice negatively impacting her income. Thank you so much for being our unified voice when it comes to all the “Special Needs Politics”. You are one in a million!

  2. It is important to keep in mind the necessity of these benefits. I receive 49 hours each week of personal assistance. This allows me to live independently – alone – in my own apartment. Because I love in New York State, which has a Medicaid Buy In Program for Working Persons with Disabilities, I am able to earn a decent income. As a single person, I am able to earn up to almost $60,000 and still keep my personal assistance as long as I don’t have more than $2000 in the bank. I don’t earn that much each year, and I never have more than $1000 in the bank. If I were to marry, out joint income could not be greater than approximately $77,000. So, in theory I could marry, provided my spouse is a bum who doesn’t have an income or earns less than $20,000/year.

  3. Thanks for writing what so many people are experiencing. It is, truly, the next horizon for marriage equality. You hit the nail on the head with so many points, but the one that struck me the most was how, from the beginning, we are hoping, praying and working towards our children’s (family member’s) independence, yet get “stuck” in the Adult years, when the rubber meets the road. I liked the FB Page, and shared on Twitter and FB. Thanks again.

  4. I think you have skipped over another huge problem a person with special needs suffers from way before the choice to get married. When that child is born, if their parents are married and earn more than a pittance salary, the person with disabilities gets NO assistance. No help to afford therapies, no entitlements, no benefits, nothing to assist in the care of the child. There is a huge chunk of families who are struggling, but get denied the help they need to raise their child simply because they are middle class unworthy. Not all families are treated equally. Some families are more equal than others.

    The article states, “Raising a child is an expensive proposition. Raising a child with special needs is exorbitantly expensive, even for families with deep pockets and the best insurance. Families rely on the assistance of a complex chain of entitlements and benefits that make it possible for their children to have the therapies, services and assistance they need to live full and rewarding lives.”

    This is a statement of fallacy. This kind of thinking has plagued our family for years. We have repeatedly applied for assistance. The doors are slammed in our faces. Please stop saying that families get entitlements just because their child is disabled. This is sadly not true. Families do NOT get the assistance of a complex chain of entitlements, and have the day to day struggle of making too much money to qualify for any help despite making barely enough to keep food on the table. The waiver program that is supposed to help families is a joke. There is a wait list of 7-10 or more years to even get considered for the waiver that was supposed to help families like ours.

    So please realize the problem is not just when the person becomes an adult. It happens all their lives and sadly their families are drowning in debt. There is NO support for a raising a child with disabilities if their parents are married and they earn little more than a pittance salary. Many families are forced to divorce just to get services for their child. How can a child with disabilities be expected to grow into a responsible happy adult when their families are treated so poorly and do not have the resources they need to help make that happen?

    It frustrates me that families like ours are left out in the cold and receive no help, no benefits, no entitlements. It frustrates me even more when advocates skip over the problem, and then swoop in with chants and petitions that again leave the family out in the cold. I want my girl to be able to grow into a young woman that can get married and live on her own, but right now we struggle and she struggles to get the things she needs to blossom into a smart intelligent person with self reliance and health to make that happen.

    We are looked down upon as bad parents that deserve nothing because we make a middle class salary. I want just as much for my child to grow up as anyone’s child with similar disabilities, but not all families are treated equal. Some families are more equal than others.

    • I want to make sure that you understand that single parents have the same issues madam. When I was unemployed after my husband walked out on myself and my 9 year old with CP, she only qualified for $311 a month because her Fathers child support was counted at 100% toward her income limit. When I got a part time job making $9 an hr. her SSI was terminated because our household because our household income limit was too high????? I totally agree with you on most of your points but don’t feel like you are alone in your struggle. Instead of fighting for entitlements, I have chosen use my time more constructively, to go back to school to get a better job, and surround myself with positive people who have helped my child and I live a great life even though we have small means. We are blessed and our cup is not half. It is over flowing!

  5. You approach the problems from entirely the wrong direction (as, regrettably, do most debaters):

    We should not extend the right to marry or the concept of marriage to new groups—we should question marriage, a largely unnecessary and antiquated instution.

    If marriage was still genuinely for-better-and-worse, till-death-us-depart, it could have some justification, but today it is a costly party, a load of bureaucracy, and a promise broken seven years later.

    “Just” living together, “just” loving each other, “just” being a couple, …, that should be enough for every one, be they hetero, homo, disabled, or whatnot.

    After all, these “just”s are what is truly important—and someone who does not understand that is unlikely to be mature enough for marriage in the first place.

    • I understand you don’t think marriage is a good idea, but that argument is not relevant here. The financial penalty for disabled people living together is penalized even more strictly than marriage.

      “If they chose to live together outside of marriage, as soon as their living status was reported, their benefits would be cut [off].”

  6. I live in Massachusetts. 23 years ago, we married ourselves in the woods. They declared us a group home (without the benefits) when we notified SSA we were living together they cut us. % years later we decided to make it official. We asked if we would be penalized, we believed, they lied. They cut us again, said we owed them $1500 we had to pay back . Yeah, still paying it back despite filing an appeal .Learn from our mistakes. We would do it over again, get married by a justice of the peace again, but this time we would tell her NOT to turn in our paperwork. Is this dishonest – probably but living below the poverty level for a single person makes life a constant struggle. We are still together.

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