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The Voice of Disabled Children: An Advocates Response to Nicholas Kristof’s Attack on Children’s SSI

This guest post is written by Bonnie B. Roswig

istock 110131153532Assaulting and dismantling supports for society’s most vulnerable citizens is a curious focus for a New York Times columnist, yet that was exactly the thesis of Nicholas Kristof’s December 9, 2012 column.

Kristof, who noted that he was “not an expert on domestic poverty” inexplicably concluded that financial supports (which, incidentally, amount to no more than $700.00 per month from the Social Security Administration’s Children’s Supplemental Security Program or SSI) for disabled, impoverished children lead to families embracing illiteracy and discouraging productivity in their offspring.

As an attorney with the Center for Children’s Advocacy in Hartford, Connecticut, I advocate for the most medically complex children and their devastated families. The argument that Kristof sets out is so preposterous and so inconsistent with the realities of these children’s lives, that I am moved to write this blog. Rather than rage against Kristoff, however, I think that it is important to understand the voice of the child recipients.

Omar, for example, would like nothing more than not to be a recipient of Children’s SSI. In fact, what he really aspires to be is a race car driver. The reality is different because he was born with spina bifida and multiple organ deformities. Because of organ failures, he has had ongoing surgeries related to his kidneys, bladder and brain. And now, at 13, he is suicidal because he realizes that he is so very different than his peers. Omar’s mother would like nothing more than to go back to work, but she can’t. Her life is consumed by racing to school for Omar’s multiple medical crises, or staying with him in the hospital for his countless surgeries.

How about Micha? When Micha’s mother escaped the severe domestic violence she faced in her home town and came to Connecticut, becoming the representative payee for her son’s SSI benefits was not the first thing on her mind. Her intent, in fact, was to finish school to become an LPN. However, Micha’s diagnosis of Ducene Muscular Dystrophy has impacted that goal. Now that Micha is six, his Ducene Muscular Dystrophy is progressing and his ability to move is becoming so compromised that he needs a wheelchair to get from one end of the school hallway to the other. Instead of spending her time studying, Micha’s mother spends her time bringing Micha to therapeutic appointments to minimize his pain and preserve the little movement he has left in his joints.

Of course, there are the children Mr. Kristof referred to who have “fuzzy disabilities short of mental retardation”.

Are these children like Evelyn, who at 13 was raped, impregnated and then miscarried? Evelyn, who is of limited intellectually ability, blamed herself for the miscarriage because “voices” told her to hit her stomach. Yes, Evelyn’s mother received child’s SSI on her behalf, and Evelyn’s public school system placed her in a clinical school for children with mental health issues. Evelyn’s mother works part time but that work schedule is impacted by continuing calls from the school voicing concern that Evelyn is suicidal.

Mr. Kristof admits that “I am not expert on domestic poverty” but if you exert any effort to look at the extraordinarily limited amount of money that is attached to benefits for low income persons, you will see that poverty is nothing to strive for. Let’s just reference Newark Mayor Cory Booker’s challenge of living on a food stamp allotment of $30.00 per week.

Mr. Kristof totally ignores the extraordinary vetting conducted by the Social Security Administration prior to granting eligibility: there are applications, medical assessments, and in the case of the children listed above, hearings before Administrative Law Judges who make the ultimate determination. This includes the Judge’s careful consideration of medical and educational documentation as well as legal argument. Eligibility for SSI does not end there. Throughout the period of receipt of SSI benefits, the child’s medical condition and eligibility are continually monitored by the Social Security Administration.

SSI has never been a career choice for my clients.

At 19, Vincent has aspirations to go to law school. Vincent, who was already in a private therapeutic school because of severe post-traumatic stress disorder, was in an automobile accident which left him quadriplegic. The past year and a half has been characterized by surgeries, vents, trachs and therapies, but throughout this, all Vincent wanted to do was to return to school. Yes, at 19 Vincent transitioned to adult SSI, but I am certain that his determination will lead him to law school. And perhaps, just perhaps, his focus area will be representing disabled children in SSI cases.

Hopefully editorials like Mr. Kristof’s, full of astonishing misinformation and unfortunate stereotypes, will not impede the eligibility process for any child appropriately deserving of benefits.

Bonnie Roswig

Bonnie B. Roswig is the Senior Staff Attorney of the Medical/Legal Partnership Project of the Center for Children’s Advocacy. To learn more about the Center and the Medical/Legal Partnership Project, go to www.kidscounsel.org

 

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