So much to say, so little time

A few months ago, I learned something I would rather not have known—that many insurance companies severely limit, or even refuse to cover altogether, therapies for kids like my daughter Julianna. Insurers pay for physical, occupational, and speech therapy for adults and children who need therapy because of an injury or illness. But if you’re born with a condition like Down Syndrome, cerebral palsy, or any number of other developmental disabilities, the same therapy is denied, because it’s not “rehabilitative”—in other words, because we’re trying to teach kids to walk, talk, dress themselves and function in the world, instead of restoring lost skills.

The state of Missouri has a program to provide these services for our kids up to age three, when the public schools are supposed to take over. But it is administered by the department of education, and its goals are understandably based on educational outcomes, not medical considerations. Besides, what about tots who don’t make it into early intervention? What about older kids living in distant rural areas without the resources to provide adequate services in the public schools?

This can all be very confusing. I know that I have spent six months learning, processing, digesting—and I still feel like I’m fumbling my way through the process. But this I know: there is an injustice here, and it needs correcting.

I know a preschooler whose limbs are coaxed into functional flexibility twice a week by a physical therapist whose services are not covered by schools or by insurance. This family is fortunate enough to live in Boone County, which provides support over and above what the schools can give—but what about kids in similar situations in other counties?

I know a high schooler with spina bifida who remains on her own two feet, living a rich, full life, because her parents have chosen to obtain surgeries and PT at their own expense.

I know a woman whose son had a stroke in utero but missed the cutoff for early intervention, despite his delays.

Why am I sharing all this with you? Because I need your help. I am part of an organization called PEP-C—Promoting Endless Potential for All Our Children—whose goal is to pass legislation requiring insurance carriers to cover “habilitative” therapy just as they do “rehabilitative” therapy. But we have to get the word out.

I know that many of you are not in the state of Missouri, but perhaps you know someone who is. Send this post to them, either by cutting and pasting the text, or by forwarding the link. Share it on Facebook. Visit PEP-C’s website. Sign up to receive information as we navigate the political process. Volunteer to talk to your state representative or senator in Jefferson City.

With a couple of exceptions, PEP-C is a group of entirely nonpolitical volunteers—a group of parents, physicians, therapists and others passionate about disability rights. People who want justice for our children, who want to do away with the discrimination experienced by children with special needs. Please help us in our efforts to Promote Endless Potential for All Our Children.