Pulling a few more things over from Facebook.
Wednesday:
Oh my goodness what a day. First visit to Oregon State Capitol, first time (ever!) talking to state representatives and a policy aide to the governor in my role as advocate for intellectual and developmental disability supports. Having a voice in government: amazing experience.
Friday:
Oregon’s State Legislature is getting some big stuff right this week. Like this:
HB 4101 would stop insurance companies from treating hearing aids as cosmetic or bilateral cochlear implants as experimental. The legislation would benefit Oregon children with hearing loss and their families by:
• Ongoing evaluations, fittings & equipment: Expanding the scope of what private insurers are required to cover for hearing services and technology.
• Help navigating complex insurance system: Requiring insurance companies to assign a case manager to each family when their child is diagnosed with permanent hearing loss to help them navigate the insurance system.
• Expand access to care with more doctors: To alleviate a shortage of pediatric audiologists, the bill would also require companies to contract with a specific number of pediatric audiologists to ensure kids have quick access to services.
This week, HB 4104 passed the House unanimously. It will now move to the Senate.
(source: Disability Rights Oregon)
But also:
So let’s chat a bit about HR 620, which passed in the US House of Representatives yesterday. Quoting Celeste Pewter: this bill “upends a key provision of the ADA by preventing people with disabilities from immediately going to court to enforce their right and to press for timely removal of the barrier that impedes access. It also removes any incentive for businesses to comply proactively with the ADA.”
And there’s the thing. Proponents of the bill paint a picture of people filing greedy or frivolous lawsuits. It’s really important to understand that ***the only thing that can be collected in ADA lawsuits are attorneys’ fees.*** You can’t win damages. If you win the lawsuit, the business or institution has to comply with federal law regarding accessibility.
The bill that passed yesterday makes it a lot harder to pursue the basic accessibility that is already required by federal law. It’s an ugly piece of work. I hope you’ll join me in imploring the Senate to vote no when their turn comes. You can reach your Senator via the Capitol switchboard: (202) 224-3121.
I’m sitting here dumbfounded at the irony of a bill that introduces access barriers to a process intended to REMOVE ACCESS BARRIERS.
May 5, 2008 @ 6:00 pm | Filed under:
Links Hey, wouldja look at this! Something went screwy with my del.icio.us link auto-posting and of course it took me about a month to notice. And now here it is suddenly working again. I tinkered today but had no joy; Emily, dear, did you fix me up? 🙂 I know I tagged a bunch more links during that time, so if you’d like to see ’em, clicky clicky.
I have also restored my Google Reader Shared Items to the sidebar (scroll down on the right).
He is 13 months old and has had his hearing aids for two months. His hearing loss, diagnosed last fall, came as a surprise to us—we spent his first nine months focused on various and sundry other medical issues. First it was the omphalocele, discovered immediately after birth: a small section of intestine had herniated into his umbilical cord. He was rushed to the university hospital, where our favorite surgeon in the world tucked his bowels back where they belonged and custom-stitched him a belly button. (It’s a beauty, too.)
Then came the string of new and alarming discoveries: seemed like half the departments in the hospital had something to say about our boy. Cardiology, genetics, neurology, neo-natal…plus a couple of others who were able to cross him off their lists, thank goodness. The next six months were an adventure of appointment-juggling, full of surprises. In March, a second surgery. In April, he was diagnosed with hypertonia (high muscle tone) and developmental delay. Wonderboy’s physical therapy became our new family pastime. His sisters are a big help with the homework.
An MRI in June showed specific types of brain abnormality but offered little insight as to what to expect in terms of future mobility. PT has worked wonders, but there is a long way to go. He’s a tough little guy, and his physical therapist is a gem–a gentle, patient soul with a wonderfully warm manner. Wonderboy loves her even if he doesn’t always love what she makes him do.
Just about the time we were getting a handle on the PT, we began to be concerned about his hearing. More tests, a surgery to insert tubes, yet more tests—and finally confirmation of what we already knew: he is hard of hearing.
Now that he has the hearing aids, he can hear everything we say to him. We’re teaching him how to make sense of it. Sign language helps, so we’ve all immersed ourselves in the study of ASL (American Sign Language) and I’m not sure which one of us loves it more. My shy Rose blooms when her hands can do the talking—she loves being able to tell me something without opening her mouth. Beanie is learning to fingerspell before she can read. And Jane is burning with an insatiable need to know WHY each specific sign is what it is.
The first time Wonderboy signed “Mommy” I thought my heart would burst. Now he says “Maaaa” and that’s just as magical. He enchants friends and neighbors by studying their faces when they speak, those big eyes serious and fascinated, a little smile quirking the corner of his mouth. And I think there can be no audience in the world more satisfying to sing to than a hard-of-hearing baby. His spellbound gaze says I’m the wonder, as if I’ve somehow invented this marvelous thing called music all by myself.
I think the real wonder is how God works it out: the child with hearing loss teaches me how to listen; the one who can’t talk yet has the most profound things to say.
Related posts:
• Signing Time DVDs
• More about Signing Time
• Rilla Signs
• Unsolicited Signing Time Commercial
• Signing with Babies, My Favorite Topic
