Head for the hills, he’s in a wheelchair!

Tan and Tamara Nguyen

Tan and Tamara Nguyen

So here’s the real shocker. Are you sitting down for this? In a research analysis done by Social Security, they found:

Although each member of an SSI married couple is guaranteed an income level equal to only 75 percent of the federal benefit rate, they are generally financially better off than SSI individuals living alone. This comparison reflects the economies of scale from sharing living expenses as well as higher incomes. However, members of the opposite sex who cohabitate and do not marry (or are not found to be representing themselves as husband and wife) are each guaranteed an income level equal to 100 percent of the federal benefit rate and generally fare better financially than SSI married couples.

You can read the full report here, where the analysis explores three different benefit rate options for the treatment of married couples in the SSI program.

Now, are you a little confused by the quote above? Getting that niggling feeling  that something isn’t quite right? It’s because the report looks at the treatment of married couples, but only in that both people receive supplemental income. The study doesn’t look at couples where only one person is receiving SSI; where only one half of the married couple has a disability. Wondering why?

That question could be asked all day and I don’t know if there is one definite, finite answer. But there is a statement in the report that quite literally rang a bell in me:

Economies of scale, however, apply to almost all sharing arrangements—dormitories, retirement homes, cohabitation, and so on. Yet marital vows of allegiance are the only type of arrangement that is taxed.

Many people don’t know that despite Tan’s permit status as being “disabled,” we regularly go through a process called “review” in which we are called into our local social security office to meet with a counselor and once again go through an interview process to prove Tan’s continued need for government benefit programs (i.e. supplement income, or SSI, and medical coverage), and to report both of our incomes over a period of however many months–and even years–that the counselor asks for. In 2009, Tan’s case was called into review eight separate times. Why? Because. That’s the reason, because. Supposedly the review process is completely automated and therefore random, but that answer would mean that we were randomly called in by a computer eight times. To this day, I’m still not convinced. And perhaps that’s the conspiracy theorist in me, but when every interview that we have ever been in begins with the question “So…when are you planning on walking again” and “So…is this condition permanent” you kinda lose faith in humanity…and their computers.

But that statement above. That statement to me is a resounding ringing of the bell of my perception of how the government views persons with a disability and their independence, and that is: 1) the individual could only ever live with their family;  2) the individual could only ever live in some type of assisted living facility or nursing home; or 3) only other disabled people could love a disabled person. In my personal experience, I have been told more times than I can count by a professional in social security or some other government assistance program professional that I “chose to live this life,” that I “knew he’s [Tan’s] disabled.”

Here’s the reality, there are a plethora of programs and grants that  provide financial support and assistance for parents of children with a disability, children of parents with a disability, and even for siblings caring for another sibling with a disability, to help augment the costs spent caring for a loved one with a disability.  But there aren’t programs that provide assistance or support for the spouse of a person with a disability, at least not that we’ve found in all of our research, nor that any professional has ever been able to find  that we’ve asked. In fact, Tan doesn’t even qualify for help from any of the above programs because he is married. These programs literally deny him because he’s married! And by the government’s own admission (quote above), married couples are the only living arrangement on the supplement income benefit program that is taxed.

And that’s the bottom line here. Programs identify with pity: pity for the parents of a child with a disability; pity for the child taking care of a parent with a disability; pity for the sibling caring for their sibling with a disability. But somewhere in the fray it seems that marriage crosses a line…until you come knocking on the door for the same benefits and support that those parents of- , children of-, and siblings of- persons with a disability get;  then the attitude changes. By no means am I saying that the things are somehow easier or less costly for the cases above,  but there is this prevailing perception that the former are seen as having this terrible burden thrust upon them whereas the spouse is seen as having chose this life (insert when you should have seen the wheelchair and headed for the hills running! Don’t you know he’s disabled!). I would say that no one would ever say this to a persons face, but as I’ve already said, it has been said to me…multiple times…by different people…and all of them working for some form of government program.

There’s a point at which I choose to believe that the reason there are these differences is because people intrinsically believe that if a person with a disability can find love and a partner, that they can conquer anything; that there are no hills that can’t be crossed, no roads that can’t be  taken.  And yet…and yet there isn’t equality in the treatment of benefits and programs for those with a disability who are married versus those who are not.

If you have a moment in your day, please consider signing this petition asking Congress to pass the ABLE Act, a bill proposing a 529-like account that aims  to ease financial strains faced by individuals with disabilities by making tax-free savings accounts available to cover qualified expenses such as education, housing, and transportation. The bill would supplement, but not replace, benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources. Passing a bill like the ABLE Act would allow persons like Tan to be able to earn and save the income needed for purchases as costly as a handi-accessible wheelchair van, a house, pay off student loans, or just have enough finances to cover the cost of living.


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