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The Honolulu Advertiser
Posted on: Sunday, March 12, 2006

Moms find it's tough to change a law

By Treena Shapiro
Advertiser Government Writer

Linda and Wendell Elento’s 5-year-old son Jason has Down Syndrome and is the reason for a bill Linda worked with legislators on that would push for two extra years of early-intervention services for children with developmental disabilities rather than shifting them into a special-education preschool.

Elento family photo

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ALTERNATIVE STRATEGIES

These strategies could help you save your measure:

• Rewrite your bill.

• Refer it to a different committee that might be more open to holding a hearing.

• Turn the bill into a resolution, perhaps asking the relevant state department to explore the issue and advise the Legislature.

• Compile more conclusive evidence to support your case.

Sources: Sen. Roz Baker, Rep. Dennis Arakaki

DO YOUR HOMEWORK

Linda Elento, who is advocating for legislation to expand early-intervention services for children with developmental disabilities, has come up with a number of strategies for citizens trying to navigate the legislative process:

• Go to www.capitol.hawaii.gov to read about members' backgrounds, contact information and committee assignments, as well as information on current bills, hearing notices and definitions of legislative jargon.

• Contact the Public Access Room at 587-0478 or e-mail par@capitol.hawaii.gov for more information on the legislative process. The room also provides a computer where you can write and print your testimony and make copies to take to a hearing.

• Call your representative or senator and the committee chair to let them know your support or opposition to a particular bill. Ask that a hearing date be scheduled because without a hearing, the bill will most likely die.

• Call other committee members to ask them to urge the committee chair to schedule a hearing so that testimony can be received in writing or orally and a decision can be made.

• If your bill is passed on to another committee, make sure you contact the new chair and committee members to urge them also to schedule a hearing.

• Check the status of a bill online often. When a bill is scheduled for a hearing, follow the directions to submit written testimony. If you attend the hearing in person, make sure to check in at the clerk's table when you arrive. When your bill is being discussed, wait for your name to be called or approach the microphone when the chairperson asks if there is further testimony.

• When you visit the Capitol, bring quarters to pay for parking, check postings on the wall and check in with your legislators.

• Don't hesitate to make fliers with the bill number, description of the bill, reasons for support or opposition and legislative contact information. Pass them out or e-mail them.

Source: Linda Elento

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Kalma Wong, seen with her autistic children Dylan and Leigh Wong-Miyasato, is advocating for a bill that would prevent the state from using vaccines that contain mercury.

ADVERTISER LIBRARY PHOTO | Sept. 15, 2005

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A couple of first-timers in the political process are finding that it's easier to get a bill introduced than it is to get it passed.

Mothers Linda Elento and Kalma Wong have each seen their bills survive the latest hurdle of this legislative session — first crossover — but now they have to persuade a new set of lawmakers to help them advance their causes.

Elento, the mother of a 5-year-old with Down Syndrome, worked with senators on legislation that would allow children with developmental disabilities to receive early-intervention services for two extra years, rather than automatically shifting them into a special-education preschool they might not be ready for at the mandatory 3 years of age.

Now she has to meet new lawmakers, this time members of the House, and go through the whole process again.

Wong, the executive director of Cure Autism Now, is advocating for a bill that would prevent the state from using mercury-containing vaccines, which some studies have linked to developmental disorders, including autism.

She managed to persuade the House members who heard the bill to send it to the Senate for consideration, but will face tremendous obstacles trying to get it heard in that chamber.

The bills advocated by Elento and Wong have gotten further than hundreds of others that have already been deferred or held, if they were even scheduled for hearing.

But hundreds more will be taken off the table before the session is over. To keep their bills alive, the two have a big job ahead — and time is short.

Their situation illustrates the struggle that citizens can face when taking their cause to the Legislature without help from experienced lobbyists or politically savvy supporters, both of which can take connections or money.

'IT'S INTIMIDATING'

Although she has contacted friends who better understand the political process, Elento is on her own to a certain extent. "I'm a parent who has spoken to many parents," she said.

Wong, with Cure Autism Now, has the backing of a national organization, but she has no experience in lobbying. "I'm not politically savvy," she said. "This whole thing is new to me."

The process can be hard to dive into. "With the Senate, just not knowing who these people are and so forth, it's intimidating," Elento said.

While seeing a bill through crossover is a victory of sorts, it also requires repeating the process in the other chamber. "Now I have to start over," Elento said, as she tried to sort through which House members would be best to talk with.

Although Wong has figured out whom she needs to talk with, scheduling the meeting has been difficult. Both times she has scheduled a meeting with the Senate health committee chairwoman, the meeting has been canceled.

"She refused to hear the companion Senate bill, which died. We don't know about the House bill. It's crossed over ... Now what?" Wong asked. "All we want is for it to be heard."

While continuing to advocate for their legislation, the moms will be turning to different strategies to advance their causes: Elento is drafting resolutions, while Wong is also looking to education.

While the bills are somewhat narrow in focus, they do have broad implications for the state and other people, one of the challenges these women will have to overcome if they want to see their bills become laws.

RESOLUTIONS AN OPTION

In that respect, Wong's situation is far from ideal: Her bill asks the Legislature to go against research touted by the national Centers for Disease Control and Prevention and the American Pediatrics Association that says vaccines containing small amounts of mercury are safe.

To Sen. Roz Baker, chairwoman of the Health Committee, that's enough to persuade her to not hear the bill, essentially killing it for the year. "I'm looking at information and research from reputable institutions and credible researchers," she said. "I'm sorry, but my feeling is even if I heard it, it wouldn't change the outcome."

In general, however, Baker noted there are other ways to try to save a measure. Bills could be rewritten to be referred to a different committee that might be more open to holding a hearing.

Another path would be turning the bill into a resolution, perhaps asking the relevant state department to explore the issue and advise the Legislature.

"I think there are things that could be done," she said. "There's always a possibility. We have a number of bills that don't go anywhere that get turned into resolutions."

Rep. Dennis Arakaki, whose Health Committee passed Wong's bill, said more conclusive evidence about the danger of mercury in vaccines would help her case.

But he pointed out there might be opposition on other fronts as well. For instance, some of his colleagues have asked whether the law would affect efforts by the state to prevent epidemics like bird flu.

While Wong is not anti-vaccination — all four of her children have been immunized — pediatricians have expressed concerns that if her bill is passed it could have a chilling effect on other parents who need to vaccinate and immunize their children.

"You might have an unintended consequence of having more sick kids," Arakaki said.

(Most vaccinations given to children — with the exception of the flu vaccine — have no or trace amounts of mercury.)

The problem with Elento's bill is different because it would require the state to change the way it allocates funds.

Currently federal funds aimed at services for special-needs children from birth to kindergarten go to early-intervention programs until age 3, then classroom programs in Department of Education special-education preschools until kindergarten.

Elento believes children whose development is far behind that of their peers should be able to continue with early intervention, where services are often provided in the children's homes.

Noting that some children with Down Syndrome or low-birth weight might be as much as 18 months behind their peers when they reach age 3, Elento said, "Some of these kids still need early intervention."

However, under the current law, their only option is the classroom.

Elento's suggestion is that the state use the federal money that would be used to pay for their children to attend special-education preschool and use it for early intervention instead.

That would be particularly beneficial for children with intense needs, who have frequent doctors appointments and illnesses, Elento said. "That's something that just doesn't jibe with preschool," she said.

COST CONCERNS

Arakaki said he plans to hear her bill and expects it to pass through his committee, but does not see it being made into law without major changes.

"The idea sounds OK to me, as long as there are adequate resources," he said.

Rather than offering early intervention to all kids at once, Arakaki thinks it would be more prudent to phase it in as resources, such as funding and staff, become available.

"Already the early-education community is stretched, and then when you add kids who might have some developmental disabilities requiring more individualized attention, that's really going to cause a strain on the number of people," he said.

Elento described her experiences at the Legislature this year as a natural progression from other advocacy she has done on behalf of her son.

"I have done what I think every consumer would do," she said. "You talk to the people you're working with, you talk to the supervisors, your talk to the agency heads. If you don't get anywhere, what do you do?"

If people are telling you that they can't provide a service because it's not in the law, Elento said, the obvious path is to change the law.

"I just know I have an issue that I know can win; I just have to get it to that point," she said. "You have to know how to play the game to get things done."

Reach Treena Shapiro at tshapiro@honoluluadvertiser.com.