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Legislative
Progress Report CALIFORNIA Legislative efforts
to improve services for those with Familial Dysautonomia in California
have advanced significantly since the spring. Our legislation seeks
to implement uniform state-wide protocols to be used by all California
county physicians in evaluating the service eligibility of those diagnosed
with rare developmental disabilities like Familial Dysautonomia. Assembly
Bill 688 specifically names FD as a condition requiring the development of
a protocol and has now cleared policy, appropriations and floor votes in
the Assembly and has moved over to the Senate. Our families feel that the
bill is greatly needed due to the statewide inconsistency we’ve
experienced with some of our kids being eligible for special developmental
services and others denied. In spite of our
successes, the outlook for Assembly Bill 688 remains uncertain due to
disagreement among members of the legislature as to the best procedure to
approve and finalize the protocols. Special thanks to Mike Rancer, Dafna
Wu, Debra Gordon and Scott Kutner for their efforts to establish a
precedent for FD that can be modeled in other states. NEW YORK On the surface, it
seems as though no progress has been made on the legislative front in New
York State, but behind the scenes, we are working. Our bill #1154 almost
made it out of committee, but Assemblyman Dinowitz withdrew it to improve
the wording. Now, after a visit to
Albany by Beverly Fettman and Lynn Lieberman, we have assurances that the
bill will come out when the next session reconvenes in January. We have a
good chance of it being passed in the Assembly, achieving the next step of
our battle. Please continue to
write to Speaker Silver if you haven’t done so, and to your Assemblyman
and State Senator. Ask your Rabbi to write. Keep the issue alive until it
comes to a vote. Include a picture of your child, the recent FD brochure,
recent frustrations—anything you think might be relevant! QUESTIONS? HELP! Contact Beverly
Fettman at (718) 543-5881 or e-mail
btfettman@aol.com. |