Tuesday, May 24, 2011

SB 1274: Action alert for Friday

Last night, Honolulu patient rights attorney Rafael del Castillo released his first post-trip announcement on the status of SB 1274.

There are no indications that Governor Abercrombie ever sent the letter that CCIIO asked for on May 18, last Wednesday. Evercare has already slash home nursing services for a medically fragile little girl on Kauai, in anticipation of the Governor's signature, to the point where the child is threatened with re-institutionalization.

As a result, del Castillo has called for a Veto Demonstration at the State Capitol on Friday afternoon, May 27. Anyone interested in attending should email him at countmein@we-are1.com

Here is the full text of last night's release.

Great things are happening. Please forgive me for not sending out an update, but I did not want to jump the gun. Besides, I wound up spending 24 hours in LAX.

CCIIO has yet to make good on the conference it agreed to thanks to the facilitation of FamiliesUSA. I am pursuing it, and hope it was not just to get me to return to Hawaii. I did not want them to bank on my returning, so I said nothing about it. In fact, I have oral argument tomorrow and have been jamming on an opening brief in an appeal I am attempting to have expedited because Evercare is slashing services – why not when you expect the consumer protections to be repealed, right?

You ask, “What about the letter from Governor Abercrombie to the CCIIO?” We have not gotten any indication that the Governor sent a letter.

So, I owe you a report on the conversation with CCIIO. If it does not happen, I will go back to DC and camp out on their doorstep.

But great things are happening. In the last couple of days, more influential organizations in Hawaii are calling for a veto, and the organizations who recognized that SB1274 was a bad piece of legislation, and unnecessary, are increasing their efforts to persuade Governor Abercrombie to veto. It is time to join hands, link arms, and make an appearance at the Capitol where the veto will be secured:

This is a call to action for a VETO DEMONSTRATION at the State Capitol. Details are being worked out, but prepare to come to the Capitol and demonstrate with all of the people who are in this fight to preserve Hawaii’s nation-leading consumer protections and rights. Look for the date and time to be announced tomorrow after I work out details with representatives of the organizations calling for a VETO. We will also let the Governor’s office know about our plans and that only a veto will call off our demonstration (signing SB1274 will not stop us). Due to the holiday coming up, plan on Friday afternoon, May 27, but I will confirm that.

In the meantime, please email me at countmein@we-are1.com if you will be at the Capitol Friday so that I can start getting a head count (for refreshments, etc.). It is BYOS (bring your own sign). I am really looking forward to this.

I want to make sure you know that great things happened in DC too. I learned from a very good source (not CCIIO because they were declining to discuss) that the CCIIO has been holding hearings with the states whose external review laws do not meet the consumer protections. This fact is unsurprising because applying temporary federal regulations to preempt a state’s duly enacted law(s) raises substantial sovereignty issues. This news is important for two reasons, as I am sure you realize: Has Hawaii law been slated for a hearing? Not that anyone in the Administration has been told. Also, that there will be hearings also provides certain important assurances. Of course, I still have to confirm this information.

I also strengthened past connections with the most influential consumer advocacy organizations with our first face-to-face meetings, and getting assurances of support, the legal analysis I was provided strongly supported our position that the preemption argument was a straw man. I was reminded of the rule that you don’t take an elephant gun squirrel hunting. That rule applies to conflicting federal and state law.

Of course, in this case, we don’t have conflicting federal and state law, we have temporary federal regs which the Legislature alleged were preemptive. But the principle is the important thing: Even if there was a conflict, the precise provision of state law that conflict are preempted, not the entire state statute, which is what our Legislature did. Thus even if Hawaii law had a conflicting provision, repealing Hawaii’s law is OVERKILL. Of course, the overkill was carried out by a faction in the Legislature because of a particular agenda.

I also had discussions with representatives from Sen. Inouye’s and Sen. Akaka’s offices and believe they will both help at the federal level, and got further support from Colleen Hanabusa’s office. I requested assistance from Congresswoman Hirono, but received none thus far.

BTW, Ed Case broadcast an email invitation for some party he was having in DC the same time I was there, and invited emails, so I emailed him to give him a chance to provide whatever help he could get for us from the connections his email said he was renewing ties with. No response. Thought you should know.

Rejuvenated and looking forward to seeing you at the Capitol.


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I'm the mom of a child with disabilities. Hannah's first neurologist said she might never develop beyond the level of a 2 month old infant, and there wasn't anything I could do about it. The brain damage was just too severe. Nine years later, she walks, uses a touchscreen computer and I've just been shown she can learn to construct sentences and do simple math with the right piece of technology. Along the way, I discovered I needed to teach myself what Hannah's rights to services really were. Learning about early intervention services led to reading about IDEA and then to EPSDT. I've been waiting for the Obama administration to realize the power and potential of EPSDT for the medical rights - including the right to stay at home with their families - of children with disabilities. The health reform people talk about long term care, and the disability people talk about education and employment, but nobody is talking about EPSDT. So I am.