Update: 7-20-09

Well, we've got the state funding until 2009.  We were a bit worried about what was going to happen to the Medicaid match funding that makes up about $61,000 of Spokane's Maxillofacial program's budget. The copied information below buys some time in that funding being cut.  The threat is still there as it's only a one year moratorium on the rule, but it's a start.  We will be looking for ways to make sure that funding issues are addressed with the new administration.  We'll keep you posted as keeping the funding for our kids will be an ongoing battle.

 

President Bush Signs Key Legislation

 Washington, D.C., June 30, 2008 – Dr. Marina L. Weiss, senior vice president of public policy and government affairs for the March of Dimes, issued the following statement:

“The March of Dimes Foundation applauds the inclusion of critical domestic priorities in the Emergency Supplemental Appropriations bill, which was signed today by President Bush.

“Most importantly, the bill includes a one year moratorium on the rule promulgated by the Centers for Medicare and Medicaid Services protecting federal reimbursement for Targeted Case Management (TCM) services.  TCM, which is used by at least 45 states in some capacity, is critical for high-risk pregnant women and infants and children with complex medical needs.  Case managers play an invaluable role from coordinating among multiple providers to securing services such as various therapies, treatments, and even medical equipment.  They are able to navigate complex and daunting systems on behalf of families struggling with very sick babies or high-risk pregnancies.

“In addition, the bill includes $150 million for the National Institutes of Health.  If as a nation we are ever going to decrease the rate of infant mortality, we need a sustained investment in public health programs and research particularly those focused on the incidence of preterm birth. This inclusion for NIH funding is therefore critically important."   

The March of Dimes is a national voluntary health agency whose volunteers and staff work to improve the health of infants and children by preventing birth defects, premature birth and infant mortality. Founded in 1938, the March of Dimes funds programs of research, community services, education, and advocacy. For the latest resources and information, visit marchofdimes.com or nacersano.org.

 

 

 

 

 

              WE DID IT!

Update: 10-8

I received a phone call from Senator Lisa Brown's office late in the afternoon on Friday (10-5).  I was informed that the funding situation was taken care of and that Mary Selecky, Secretary of the Department of Health would be making an official statement about the funding on Monday (today).  It was a fantastic end to a long journey for us!

So, I've been trying to find out more information on what funds covered the program.  I learned that the Department of Health was going to find some "bridge funding" to cover the program until the legislature can figure out the specifics on where the money will come from. 

As far as the local money goes, we have yet to hear any specifics yet.  It was relayed to me that Spokane is contributing $7,000 to  help cover the $35,000 that was reallocated.  I'm not sure on what the other communities are contributing yet, but I have heard that the local money should not be a problem, that they will find a way to cover the funding. 

I was talking with the JoNel Aleccia from the Spokesman Review today and told her that it's hard for us to sit back and assume the local money will happen.  We've worked so hard focusing on the state money. I found it difficult to be as excited as I should have been because of the uncertainty of our local contributions to the program.  Hopefully we will hear more soon.  I will keep you all posted on the specifics as soon as  I hear anything. 

I would personally like to thank EVERYONE for EVERYTHING they have done to make this happen.  It took teamwork, dedication and passion.  This journey has been so challenging, yet incredibly rewarding!  And the best part is that we did what was right for our state's kids and people listened! 

We are not yet done.  I have one more action for you to take.  We MUST send emails, phone calls and letters to Senator Lisa Brown, Senator Chris Marr and Governor Gregoire for supporting us and relaying our concerns to the Department of Health.  Without their help, we would have not had the same opportunity for success.  These leaders have proven that their mission is to help ALL the children in our great state!

We want to have a celebratory meeting!  Stay posted to see what we are planning!

                                                                    

 

Previous web entries that reflect our journey:

Click  here to go to public offices links

Click here to view the first letter out to families

 

Thanks to all of you who made it to our first meeting!  Your energy and ideas were inspiring! 

 

8/30-  Please read over the meeting notes for details. In summary, we agreed to begin an email, phone and mail campaign sending out in "bulk".  This means that we will email, phone and mail on every 5th day beginning September 5th. Then the 10th, 15th, 20th and so on. So our elected officials will be hearing from us all (hopefully MANY) on one day.  This does not mean you can't email at other times, but we thought that this may make our message louder and more memorable. 

IMPORTANT:  We wanted to have the same subject in the subject line, RE line of letters and phone messages.  We decided to address the subject as Cleft Lip and Palate Funding Crisis

LOOK WHAT WE'VE DONE ALREADY!

 

New info published to web 9/9:

 

Published to web 9/15:

Meeting minutes from 9/14-PLEASE read the notes from the meeting. Unfortunately, we have learned we only have until October 15th to get this emergency funding or the local Board of Health can't contribute their portion of the funding for our program here in Spokane.  WE NEED TO CALL THE GOVERNOR'S OFFICE from here on out.  DAILY if we can!  Call Sarah Cherin listed above.  She's the Children's Alliance lobbyist and believes this is a community issue, not a statewide issue.  We need to convince her that it will affect ALL of WASHINGTON'S children. 

***We need graphic (the more graphic the better) pictures of our kids going through various procedures.  You can send them to my email here.  If you can't do it electronically PLEASE CALL me and we'll go through snail mail.

 

UPDATE Published to web 10-1:

OUR NEXT MEETING:  Plan for the second week of October as we will have more specific information by then (time TBA)..... at Holy Trinity Episcopal Church. Click here for directions.  Kris Christensen, Communications and Program Coordinator from the March of Dimes offered her church due to it's location being close to the Regional Health District and centrally located. If you can't find someone to watch the kids, there's a kids small play section in the room where we are meeting. Kris will also be there to listen to our ideas/actions and help us plan new actions. I think we may be able to send out generic mailers/postcards for the meeting info through the SRHD.  Please check the website for the specifics as we cannot put the meeting info on the mailers.  It will just say the time and date of the next meeting. 

So, Jana Farmer should be calling everyone who has come to previous meetings to remind them of the next meeting. If you weren't able to come to one of our meetings, please check back to the website for information about the upcoming meetings.  The website and phone calls will be the only way we have to get meeting info out there. Feel free to email me if you have any questions.  Try emailing first because I often get home late and it may take me a few days to return all the phone calls I've been getting about this issue! I can reply to emails until the wee hours of the morning!

 Can't wait to see you all again.  If you couldn't come to the previous meetings, PLEASE try to come to the next one.  It's NEVER too late! 

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