She Has a Dream

I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character.
--Dr. Martin Luther King, Jr.

In the middle of a conversation about school earlier this week, Rose told me about an activity that her class had done. In anticipation of the holiday in honor of Martin Luther King, Jr., they talked about King's famous "I Have a Dream" speech, and then they were assigned to come up with a dream of their own to share with the class.

Rose's dream was that her sister Joy would get a good education and go to
college.

It shouldn't take a prophetic voice to articulate what I grew up with as a basic expectation in my own family. But sometimes it does.

We've been cautious about educational expectations for Joy, as you may well have picked up if you read my reflections on the ABLE Act. It's hard to see college when your first-grader still doesn't meet most of the standard criteria on the kindergarten-readiness lists.

And yet, it's all too easy to fall into the "soft bigotry of low expectations." (That phrase has entered into the conversation so completely, I was surprised when I looked it up to see where it had come from. I see it as rather an ironic source to use on this day of all days, but there's an important truth carried in the words.)

Here's how Kathie Snow, who writes at DisabilityIsNatural.com, put it in her essay "The 'Right' to a Normal Life" (emphasis is mine):

Is a child with a disability given an allowance? Expected to help around the house? Taught how to use the phone? ... Is the child expected to participate in and experience the traditional, ordinary, typical activities of her brothers, sisters, and similarly-aged children? Is she expected to achieve an academic education which will enable her to attend college, vocational school, and/or be employed in a real job? Do we expect the child to leave home one day, live on her own, get married, and live a REAL LIFE as an adult? When we don't encourage and provide typical experiences (and have high expectations), we're robbing the child of the "right" -- the opportunity -- to lead a normal life.

I had just read Snow's piece as preparation for a program I'll be participating in over the next six months, Wisconsin's Partners in Policymaking, a training for self-advocates and family members who want to learn to influence public policy around issues of developmental disability. In fact, I'd read it the very morning of the day that Rose told me of the dream she'd shared.

No coincidences!

I know I'll be paying a lot more attention to our expectations for Joy in the coming months. In a couple of long-overdue baby steps, we've begun serving her meals on the same ceramic plates as the rest of the family, instead of the plastic pocket-plates she's used up to now, and transitioned her to Rose's beloved "Cooshie Booster" instead of the buckle-in booster that's been the default (she's way past big enough not to have to buckle in at mealtimes!)

There will be other changes too -- small steps can go big places.

If we're going to live in a nation where Joy will be judged, not on the elements of her disability, but as a capable human being who will spend her lifetime learning and growing and achieving, we need to lead with high expectations ourselves.

A Generic Post

In principle, I'm all in favor of saving money with no-name brands.

We do a lot of that in the grocery store. Our cart fills up with a lot of store-brand or lesser-known brands, every bit as tasty and we don't have to pay for all the advertising overhead!

Then again, there are exceptions. I happily eat the off-brand Crisp Rice (instead of Rice Krispies), packaged in the big plastic bag; JoyDad eats Mom's Best raisin bran instead of Post or Kellogg's. But I do not like the taste of off-brand Cheerios and Kix. Those two are not every-bit-as-tasty in the off-brand, I can taste the difference, and I'd really rather not buy/eat the inferior stuff.

There are some similar -- and much higher stakes -- issues with generic drugs too. In general, I'm all in favor. Health care costs are way-too-high, and generics can do their bit to help bring costs down. JoyDad and I avail ourselves of generics both for prescriptions and for over-the-counter meds.

Unfortunately, epilepsy drugs are a example of when generics aren't necessarily ideal. The FDA rules for generic bioequivalence allow for a rather suprising amount of tolerance around how well a generic version needs to match the corresponding brand name -- to make the cut, a generic needs to be reliably "within 20% above or below the blood level generated by a corresponding brand drug." When it comes to anti-epileptics, where the therapeutic dosage can be in a narrow range, that degree of difference between brand-name and generic (and possibly even more so between two different generics) can apparently be enough to mess with seizure control, to potentially disastrous results.

A recent article at Epilepsy.com has a nice round-up of recent research conducted on generic substitution for anti-epilepsy drugs, with a number of studies pointing in the direction that the differences may indeed be problematic.

There are a couple of different approaches underway to remedy this. A citizen petition was presented to the US Food & Drug Administration (FDA) in 2006 requesting that the agency address the issue of brand-name/generic substitution for anti-seizure meds. However, it does not appear that the FDA has responded substantively. More recently, in the conference report that came out with the funding bill for the FDA for the coming year, Congress has upped the ante by including the following request:

The conferees request the FDA report on adverse events and seizures associated with brand and generic anti-epileptic drugs. Specifically, the agency should examine the pharmacokinetic profiles of “A” rated anti-epileptic drugs from different manufacturers of the same therapeutic agent. The Committee directs the FDA to submit a report not later than September 30, 2010, detailing whether the agency believes that any changes to the current bioequivalence testing should be recommended.

(from FDA Law Blog)

Although -- the FDA is already on record with the belief that no changes need be made, so I'm not sure how this would impel any belief-changing (why is this about "belief" anyway?) Maybe if either internal or external evidence piles high enough, they might change the tolerance guidelines for this particular group of meds. I wonder if that's been done before.

Here in Wisconsin, there was also a push for a legislative remedy this past session of the state legislature. The bill (2009 AB 506/SB 354) would have required consent from both the prescribing physician and the patient/parent/guardian before a pharmacist could substitute generic for brand-name anti-seizure drugs, or substitute one generic for another. Wisconsin law already prohibits such a switch if the original prescription specified "no substitutions" -- and the opponents of the measure were quick to point this out. A public hearing was held, but it looks as if the bill died in committee, and never came to the floor for a vote.

As you might guess, we've had direct Joy-experience with this, two times this year now. We've been so fortunate to have finally hit the sweet spot with her meds combo, such that the scary-seizure days have receded into memory for a while now. One of her two meds has been generic from the get-go, but the other one began as a brand-name.

I knew about the substitution concerns, and so I was taken aback when I showed up for a refill at the pharmacy counter this past January and was told that our insurance wasn't covering the brand-name anymore, so they'd filled it with the generic. I pressed the pharmacist a bit, but he seemed to think that we'd be in for an uphill fight for reimbursement if we wanted to try to get doctor's orders not to switch. I went ahead and let them ring up the generic, and contacted Joy's neurologist, who said he didn't anticipate any issues with the switch. So we started in with the generic, and saw no problems, and so that chapter ended well except for being an extra worry in the back of the mind as we started in on that new bottle.

Well, here we are only six months later, and they've switched it again. This time it's from one generic to another. This time the issue was with our pharmacy's wholesaler, who suddenly made a complete switch to another manufacturer. The pharmacist was, once again, sympathetic. He had taken a continuing education session on just this issue (generics and seizure meds), knew the concerns... and couldn't do a thing for us. He did try, calling the wholesaler just to be sure that the other wasn't still available. I'm sure the pharmacist's boss wouldn't thank him for this, but he even suggested that we might want to call around and go to a different pharmacy if we could find someone else who carried it! Which we don't really want to do -- inconvenient at best, and who's to say the new pharmacy's supplier wouldn't pull the same trick in a month or two?

The legislation was well-intentioned, but I wonder it would really help either situation. It's aimed at the pharmacist, but he/she can't do anything about what our insurance will cover, nor (probably) about decisions at the wholesale level.

I dislike ending a politics-wonk blog post without a call to action. Sigh. Maybe just to think good thoughts for us as we crack open the new generic bottle, that all continues well with Joy's seizure control.

"Every NO is One Step Closer to a YES"

Had another amazing seminar day in my LEND program yesterday. One of the (many) components of the course is policy advocacy, and that was yesterday's theme.

We were privileged to have a panel composed of a parent activist who's been involved in many organizations and policy campaigns on behalf of children with special needs; the executive director of the state's disability rights organization; and a state senator who co-chairs one of the most powerful committees in the state capitol, the Joint Finance Committee.

Together the three of them told an ongoing story of a decade-long effort on behalf of children with disabilities in Wisconsin, who sit for years on waiting lists to get Medicaid-waiver funding for support in their homes. Autism, with its high-profile political status and recent insurance mandate win, has rather jumped to the head of the line in this state; rather than playing one disability off another, they are using it as an example. Kids with autism shouldn't have to wait for support and treatment; neither should any other child with a disability!

In context of this ongoing struggle, where there have been lots of roadblocks and setbacks, they told a remarkable Wisconsin civil-rights story. The star of the story is a woman named Vel Phillips.

Vel Phillips was the first black woman to graduate from the University of Wisconsin-Madison law school. She then became the first black woman to get elected as an alder on the Milwaukee city council, in 1956. One of her first acts as "Madame Alderman" was to propose a fair housing law, to prohibit "red-lining," the practice of refusing to sell homes in certain neighborhoods on the basis of race. The measure went immediately down to defeat, 15-1.

The rules on the council, the panelist told us, was that you couldn't re-introduce a measure for 90 days. Guess what -- 90 days later, she re-introduced that measure. And again, down to defeat, 15-1.

She did this over and over. Her friends started chiding her about it. This is ridiculous, you know, they said. You're not going to get anywhere with this. She heard their objections, but did not heed them. She continued right on doing what she'd been doing.

After a while, some of the aldermen (remember that everyone else on the council were white men) started coming to her privately and apologizing for their repeated "No" votes. I know you're right, they began to say. But my constituency is just not going to back me on this.

Vel went back to her friends and told them, They're apologizing to me! We're making progress!

And that's where the panelist quoted Vel Phillips' dictum:

Every NO is one step closer to a YES.

Well, the years began to pass, some members on the council turned over, the civil rights movement was brewing nationwide, and Madame Alderman started to get a few votes each time she brought the measure forward.

It took six years. But finally a majority came through, both locally and nationally. And, as the panelist told it, the night of that Milwaukee vote, there was a huge crowd awaiting Vel Phillips outside the city building. And they took this petite powerhouse of a woman on their shoulders, and "they marched all night through the red-lined neighborhoods of Milwaukee, where they had never been allowed to buy a home before."

This was the one point in the entire panel presentation, for all its riches, that tears sprang to my eyes. It wasn't getting to ask a direct question of the senator, as fine a privilege as that was, nor was it getting to meet him and shake his hand and exchange a few words afterwards. It was the story.

Two takeaways.

Every NO is one step closer to a YES.

And, stories have power. We have to tell our stories to the people who make things happen. Our stories are crucial in turning NO into YES. Together, we can move policy mountains.