The world doesn’t get to have it both ways with Down syndrome

Last week, my daughter was assessed to determine whether she qualified for a waiver under our state’s Medicaid program. When informed that she may be initially denied–and many wrongfully are–I thought, “you don’t get to have it both ways.”

Janus, the Roman two-faced god

Janus, the Roman two-faced god

Medicaid is a state-run program. I’m pretty sure that every state has waiting lists for those with disabilities to actually become covered by Medicaid services. After posting a blurb about my daughter’s evaluation on my Facebook page, I learned from friends how their son or daughter just became eligible at age 40 and how others were still waiting, even though their children were well into their adult years.

Several years ago, my state settled a lawsuit brought on behalf of a woman named in the court filings as “Michelle P.” The state agreed to establish a waiver so that those on the waiting list could actually be covered by Medicaid services. The waiver was named in her honor: the Michelle P. Waiver.

Last week, we began the process of getting on the waiver after many of my friends who have children with Down syndrome told me how it had helped them. The process begins with an assessment to determine how disabled my daughter really is. We were asked a litany of questions, requiring us to respond with all the things she cannot do, needs help with, or situations where she behaves inappropriately.

Now, if you’re a parent, think of how you would like to talk about your child. While we all joke about our children driving us crazy, I doubt you would enjoy having to prove to the state that your child is disabled.

I appreciate the need to have some filter, so that simply anyone couldn’t say, “Hey, I’m disabled: now give me state services.” I get that. There’s already people who are taking advantage of public supports who likely should not, or should not to the extent they are receiving them. But, becoming ever more depressed as the assessment went on, I thought that the world shouldn’t get to have it both ways  in the case of Down syndrome:

  • The world doesn’t get to deliver a Down syndrome diagnosis by saying “I’m sorry;”
  • Down syndrome doesn’t get to be a “medically relevant” condition for  prenatally testing where professional guidelines require that physicians counsel their patients on aborting their pregnancies after a prenatal diagnosis;
  • My daughter does not get to look to a future job where her employer is authorized by law to pay her sub-minimum wage because she has a disability;
  • Courts in over half the states in this country do not get to sit in judgment and say, “Yes, parents, because you testified that had your doctor prenatally diagnosed your child with Down syndrome, you would have aborted her, she is now a wrongful birth and you are awarded millions of dollars based on the claimed healthcare costs for her life;”
  • An endowed chair of bioethics at Princeton University and other academics do not get to argue why the cognitive challenges of Down syndrome render those lives less than a “person” allowing them to be killed even after they are born;

AND

  • Public health systems do not get to justify state funding of prenatal testing for Down syndrome based on the “savings” from pregnancies terminated to avoid the birth of a child who would be a cost to the state’s Medicaid services:

IF YOU’RE NOT GOING TO COVER A CHILD WITH DOWN SYNDROME UNDER THE MEDICAID SYSTEM!

In truth, I would make the trade if everything would be consistent. I would forego Medicaid services for my daughter, if it meant all of the above wasn’t also the way the world treated her and her condition.

But it’s not.

The world still treats Down syndrome as a disabling condition that the individuals who have it suffer from and pose a burden to society. The world doesn’t get to have it both ways with Down syndrome. If my daughter poses a burden to the public health system, then the state doesn’t get to deny her being covered by the public health system. And not just my daughter, but every other individual with Down syndrome’s assessment should simply be:

Does your child have an extra 21st Chromosome?

Yes?

Well, here’s your Medicaid card.

The world doesn’t get to have it both ways.

Postscript: as though a demonstration of the absurdity of having to demonstrate Down syndrome qualifies for public supports, here’s a recent story where IDENTICAL twins with Down syndrome had only one twin initially approved while the other was denied services.

Comments

  1. Karen Prewitt says:

    I know we are fortunate here in FL in that the qualification of Down syndrome was added about a year or so about to the Waiver. Now, instead of having to prove how “needy” our son is, the dx alone is enough. This was quite a battle for us personally, since it was a new addition. Hoping those coming behind us have an easier time.

  2. Beth Nodland says:

    This is our story, too. And that of other families in Bismarck, North Dakota. Our son is now 5. But a couple years ago, after he was assessed by the ND DHS, I had to argue, to a room full of “experts,” that our child with DS might NOT be able to function fully independently (projected into the future, to his capacity at age eighteen, based on some crystal ball projections — which was the protocal for our regional departent of Human Services!) All this, after they attempted to assess his capacity and I.Q. at age 2.75. Our little guy wouldn’t cooperate with the tester, so they declared him untestable, but still, assigned him an I.Q. number that put him above the range of “mentally retarded,” thereby jepordizing his supplemental Medicaid coverage. Only because I was willing to fight for him, basically to present a litany of projected incompetances at age 18, and argue with a room full of social workers and Dr.s, he got the waiver for continuing coverage now. That is ridiculous. [Perhaps in order to get public education all parents should be required to generate a list, when their child is 2.75, of what that child’s likely incompentencies might be at age 18?, it’s a super fun exercise! Try it. ] Oddly, in other parts of the state, the dx is enough. There are, sadly, in the end, children with Down syndrome in Bismarck who have been denied Medicaid. In a state so flush with money, that is nothing if not shameful.

  3. Cathy ward says:

    Very well said. Unfortunately, the program doesn’t agree. Our son who has that extra chromosome has been denied just about every assistance as he’s ‘not disabled enough’….Until this year, the school provided therapies but at that magical age of 9 and the lovely testing to determine his ‘label’ happened- now instead of focusing on academics, they will now focus on self-help skills, why? Because he didn’t test ‘low’ enough for academic services- seriously? It makes my head spin that this can happen….

  4. Jeffrey Kraus says:

    Now that Down sydrome is mostly avoidabled it should be treated as other avoidable conditions. If you quit your job you don’t get unemployment insurance. If you commit arson you don’t get reimbursed for the damage. If you intentionally give birth to a child with Down syndrome you should not get social support for disability including medical insurance and special education. These social supports should be limited to those where the test was a false negative and not available to those who refused the test.

    • Have you spent more than the one visit where you didn’t actually interact with a the people with Down syndrome that you saw? Until you spend the time getting to know they individuals, your opinions come from a place of willful ignorance and bigotry. Your position isn’t even logical since Down syndrome cannot be “avoided”–only lives with the condition ended. Your logic would support the rationale of the Holocaust: these conditions can be avoided by killing them freeing up resources for the rest of us who judge which lives are not worthy of living from a position of supreme ignorance.

      • P. McCoy says:

        Not being bigoted, just acting as blowback to die hard anti choicers who want to outlaw all abortions and contraception. You want to destroy the first real attempt at at universal health care because you don’t like that some people see sex for other reasons than procreation and so you battle against the two things that I mentioned. Well, I don’t want healthcare monies supporting those who have Downs syndrome. I don’t care if they are as sweet as hamsters, I expect more from humans thus I advocate that parents that are irresponsible enough to bring them into the world should pay 100% for all of their needs and have a trust fund ready to do the same when the parents are gone. Or let their churches support them. See how far your broke from sex abuse lawsuit payout dioceses in the Catholic Church will pay or even room, feed, board and medically treat your children. This is the concept of blowback. If you are going to decide what medical services you’re not going to pay for, then I have the right to do the same.

        • Do you know a single person with Down syndrome?

        • P McCoy, you are confused. As the parent of a child with DS I am very much in favor of healthcare reform, for one very obvious reason. Insurance companies no longer get to exclude children with disabilities on grounds of having a pre-existing condition. Other parents I have talked to about this feel the same way. Personally, I would favor fully socialized medicine. How do you manage to conclude that we are trying to wreck universal healthcare (which we still do not have, at least in the US)?

          Where the rest of your rant comes from I don’t know. Blowback against what? Against a straw man. Mark was not advocating ending access to contraception or abortion, he was complaining of double standards in the treatment of people with DS. Your statement makes no sense.

      • P McCoy, you are a complete disgrace of a human being….beyond disgusting!!!!!!!!!

  5. Jeffrey Kraus says:

    The rationale of the Holocaust was the killing of people for religious reasons, see http://hwarmstrong.com/why-the-holacaust.htm

    Abortion does not kill people as humans are not people until after birth, see http://www.thechristianleftblog.org/1/category/abortion/1.html

    Abortion prevents the birth of people with birth defects the same way as vaccination prevents infection.

    Parents are free to give birth to disabled children but should not expect society to pay for that choice when it can be avoided. If their lives are worth living then why the need for extra social support?

    • Godness Jeffrey or P. MCCoy whichever one you are this time round, your Mother must be so proud of you for your kind words. NOT. I know I would be ashamed of my son commenting such as you are. How much of an ugly heart do you have to say your above comments such as unavoidable conditions. Your lfe is no more valuable or important than someone with DS or any other differently abled person. Shame on you! Pity you wernt avoided all those years ago with your condition of nasty heart & soul….

Trackbacks

  1. […] after the Roman two-faced god (whose image I have featured in posts about apparent hypocrisy and double standards). Most all Janus-faced animals are either stillborn or short-lived. But, there is one cat, Frank […]

  2. […] that are part of transitioning into adult life for individuals with intellectual disabilities, like detailing all the things they cannot do in order to receive the publicly provided supports established to assist […]

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