Because of Katie…

“Because of Katie” | Children With Severe Disabilities Can Live at Home
By Marie Myung-Ok Lee, June 6, 2012, 10:17 AM

Katie Beckett died last month at age 34. Most Americans don’t know who she is. But as a parent of a child with disabilities, her name is as familiar as my own child’s. Because of the legislation that bears her name, hundreds of thousands of children, including my own, are able to be at home with their families instead of being institutionalized.

At 5 months of age, encephalitis left Katie Beckett spending most of her early years in the hospital. When she was 3, doctors cleared her to go home with proper supports — she still needed to be on a respirator 12 hours a day. Her insurance had been exhausted, and Medicaid refused to pay for her care unless it was done in the hospital — even though treatment could be administered at home at one-sixth the cost.

Katie Beckett’s mother tirelessly advocated, and in 1981 succeeded, in bringing Katie’s plight to the attention of President Ronald Reagan. Reagan acknowledged the illogic of “hidebound regulations” and waived the rule so Katie could go home. The following year, Reagan signed what became known as the “Katie Beckett Waiver” so all disabled children could receive Medicaid supports.

For our family, with a son with autism and other complex medical issues, the Katie Beckett Waiver literally keeps our family intact. In earlier generations, children with the level of disabilities our son has were often institutionalized as a matter of course, the conventional wisdom being that they were too difficult to manage at home. It is difficult to manage — our son, at 12, is still in diapers, for example — but with the supports he receives, including home-based behavioral therapy as well as “respite” hours where he is taken care of by a trained caregiver so that my husband and I can attend to other things, we can do it.

For us, home-based care helps to create community. In his first years, our son, like Katie, was hospitalized for an acute medical condition. We became close to many of his nurses, but it was a relationship that ended abruptly when we left the hospital. But because we now bring the caregivers into our home, this setting engenders a different kind of relationship.

Our current caregiver, Kelly, has worked with our son for so long that she has not only absorbed the rhythms and routines of our family, she’s become a part of it. When my husband had a medical emergency last month, our friends were over in a flash to watch our son while I accompanied my husband in the ambulance. In my panic, I forgot to put on shoes, but the one thing I did before speeding off was try to call Kelly. I couldn’t reach her — the vagaries of mobile reception quickly disconnected us — but even receiving this incomplete call, she somehow sensed something was amiss and left her day job to rush to the house.

Our son was still screaming, hitting himself and others, traumatized by the noise and commotion, and she calmed him down. While our friends organized a rotating pool of people to stay in the house, Kelly oversaw our son’s care, directing our friends by phone until she was done with work and could come back to stay with him — for two nights. In all this, she even managed to stop by the hospital to bring me a jacket and shoes.

One of the deepest fears I have is what would happen if my husband or I become incapacitated. We don’t have family nearby, and it was heartening to see our “takes-a-village” friends pitching in — including Kelly. At that time, she acted as a friend and a quasi-mother to our son and not as a paid caregiver. But it’s because of the Katie Beckett program that she came into our son’s life and has been able to do so for so long.

In this time of rancorous partisan debate over healthcare, perhaps a minute of silence should be taken in Katie Beckett’s memory before each session of Congress to remember how she and her determined mother captured the ear of a president, one who didn’t think in terms of “Can we make such a drastic change to Medicaid?” or “Is this socialist?” and only saw the tragedy of keeping a child separated from her family and at huge cost to taxpayers — and he fixed it with a swipe of a pen. The girl who doctors had predicted wouldn’t live past 10 then lived at home to graduate college, hold a job and write a novel as well as join her mother in the fight for disability rights.

Life with a child with disabilities is still exhausting, and there are days when my husband and I wonder if we can manage. But we have our hours when Kelly or Tasha comes in for our son’s therapy or to give my husband and me a few hours to do the grocery shopping or even a dinner out. Then we can come back to our son refreshed.

We’ve spent a lot of time teaching him to ride a two-wheel bicycle, and he’s finally gotten it. In this warm weather, we’ve had some fantastic rides on the bike paths near our house. And, after years of weekly visits to my friend Anne’s farm, our son has begun to overcome a severe fear of animals and made perhaps his first friend, a water buffalo calf. Just the picture of him smiling as he makes a few silly attempts to pat the calf’s head, or watching him pedal his bike with such determination, reminds me again of my gratitude to Katie Beckett, her mother, and Ronald Reagan: because of them, we have not missed these moments. In the years since the Katie Beckett Waiver came into effect, a half a million families just like us have had the challenges and the privilege of caring for our children at home.


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