Why Blog? Article written for EIPLP.

I was recently asked to write a brief article for the Parent Perspective News Letter for the Early Intervention Parent Leadership Project (EIPLP).   ( http://www.eiplp.org/  )   I am thinking that this may be just one of a series that I will write on Blogging since there are some many topics to discuss within itself.  So I begin with Why Blog?

How I see it.

This picture below is not quiet perfect, or rather so it seems. 

Stare at the heart of it long enough though and the image corrects itself.

Trip to the State House

Waiting in line stinks! And its cold out here.

What will I say to the Governor?  I got it!  "Babies can't wait, fully fund and support Early Intervention please!"

There was a point where Christopher shook the Governors hand but living in the moment I didn't get to capture on film.  This was taken after we stepped back to give others a chance to express their concerns and joys of EI too. 

Link to News Coverage of the State House Stroller In: Click below.

In the news.

If it’s not said who will hear?

Before & Now

Before we had our son;

I knew nothing of Early Intervention.

Before I learned of and experienced the  benefits of Early Intervention;

I knew nothing of Advocacy.

Before I learned the simple steps of Advocacy;

I knew nothing about my voice.

Now our son is a graduate of EI;

I know that we have support.

Now our son attends school;

I know that his success is built on the foundations learned through EI

Now I understand Advocacy;

I know that I just need to share my story, and passion for my beliefs.

All it takes is using my  Voice  to be heard.  It's that simple!

JC

CALL TODAY!

Call the Governor Day Tuesday, March 1st On Tuesday, March 1st, 

please take 2 minutes and make 2 calls. 

Call Governor Patrick @ 1-617-725-4005 and his Budget Director- Jay Gonzalez @ 1-617-727-2040. 

Ask them to “Stop the cuts to Early Intervention and follow President Obama’s lead and invest in Early Intervention.”

Let’s make the phones ring off the hook demonstrating our concern about the 27% Early Intervention budget cut & the plan to bifurcate the Early Intervention system.

Call to Action: Contact Governor Patrick Today to Protest the Early Intervention Cut and Ask Why?

Re:    Call to Action: Contact Governor Patrick Today to Protest Early Intervention Cut
Date: January 27, 2011

Call to Action:  Contact Governor Patrick Today to Protest the Early Intervention Cut and Ask Why?

Yesterday, Governor Patrick unveiled a state budget recommendation that included a 27% cut to Early Intervention funding - the largest and most drastic cut ever proposed for Early Intervention services!  
(The Governor's budget cut the EI line item by $8 million from the current funding level of $29.4 down to $21.5 million).   

Action Step: Contact the Governor Today
We need to let the Governor hear loud and clear from the EI community that we are appalled and shocked at the level of cuts he is proposing for Early Intervention and we want some answers!  

We want to know why his words don't match his actions.  The Governor says that his budget is investing in the future and he increases funding for Education and Special Education so why is he cutting EI?  Why is he abandoning his commitment to the state's youngest and most vulnerable children and asking them to sacrifice their future health, development and education for the sake of the recession?  There is a major disconnect here.

Due to the snowstorm, we recommend emailing the Governor. Please note, the Governor does not have a direct email address so instead you need to fill out the email form on the contact page using the link below.  Just scroll down the contact page to find the pre-loaded email form. 
  

Here is the link to contact the Governor: http://www.mass.gov/?pageID=gov3utilities&sid=Agov3&U=Agov3_contact_us

Here is what you should include in your personal message: Please use your own words which are far more powerful than the same message repeated over and over again.

1. Put Early Intervention or Early Intervention Budget Cuts in the Subject Line
2. State your affiliation with Early Intervention (Parent of child in EI; Program Director; Executive Director; Pediatrician/Medical Professional)  
3.Tell the Governor how you feel about the Early Intervention cut he is recommending (appalled, shocked, concerned, confused, disappointed - please use your own words here)
4. Ask the Governor to explain why he is cutting Early Intervention so severely and abandoning his commitment to Early Intervention?
5. Ask for a reply or response back to your inquiry and your stated concerns.  
6. Give your contact information 

Pleae help us send a resounding message to the Governor from the Early Intervention Community.  Thanks as always for your tireless advocacy for EI. 

MY LETTER:


As a parent of an Early Intervention graduate, and an Interagency Coordinating Council Parent Representative I write to you today to explain my disappointment, concern, and fear for the success of the Early Intervention program in the State of Massachusetts. 


Our son Christopher was diagnosed at an early age with Autism with the help and support of his child care providers and the Reach Service Net Organization (A Massachusetts Early Intervention Provider).  Because of this early diagnosis and the beneficial service hours he was then able to receive he continued and continues to gain speed in many of his developmental areas.  To the point that he is attending a preschool program fully included with his peers.  


The support our family received through the Early Intervention Program enabled us to better understand the challenges that our son Christopher faced and would face, as well as enabling us to best work together as a family to support him.  Through our positive experience I felt it necessary to continue on a path of learning and understanding, and when asked to become a parent representative for the ICC I was most honored, excited and willing to do so because I feel strongly that EVERY child in need of this early push is deserving of our time, hearts and yes, money to get the job done.  It is our responsibility as a community to support these children to succeed in every possible way we can. 


The support that our son received set him on a course to succeed from the moment he stepped foot into the public school preschool system.  Had he not had these services I hate to imagine this but I strongly believe he would not have been ready.  Further more the services he would then need through the public school system would have been ten fold what they are now.  Rather instead as I have already said – he is fully included in his preschool setting not only thieving but also contributing to the over all experience for all those who work with him and play with him.


The budget information provided to me on this day shows to me that these children are willingly by the state being left behind.  Why would the state abandon these children by reducing the budget so drastically?  Is it not important to our state to value the commitment to Early Intervention, by supporting all the efforts put forth by many amazing champions of the Early Intervention Program, the service providers that have dedicated their lives to making a difference not only for these children that need them but also to contributing to a better over all community?  


I would like to better understand the reasoning behind these tremendous cuts to the budget?  Can you please tell me how it is when for the past few years Early Intervention has struggled to survive against all odds that the budget would be reduced?  By so much?  Why not even level funding?  This makes no sense to me.  Please explain. 


I am Concerned, Disappointed and Fearful for our states children that are counting on us to help them with the necessary push they need in the critical early stages of brain development.   A critical time that we can’t get back – they can’t wait, they need our help now.


Sincerely, 
Jennifer Chabott
Address XXXXXXXX
Ph XXXXXXX
XXXXXX@hotmail.com
Our Blog:
http://chabott.blogspot.com/
Join us in our daily adventures of everyday life "living with autism". The joys, the frustrations, the celebrations, the love, the learning, the patience, the . . . the list is long, the journey; so worth it!

SENT !

Receipt of letter sent;

Contact us - Thank you

---

Thank you for sharing your thoughts with Governor Patrick.  The Governor values your opinions and enjoys hearing from people across the Commonwealth.  Please know that your views are always welcome in this administration.

The Governor and his staff strive to review every piece of correspondence in a timely manner.  If appropriate, we will forward your message to the appropriate staff member, department or the state agency that can best address your concerns. If you need an immediate response, please call the Governor’s Office at 617-725-4005 to speak with a Constituent Services Aide.

Again, thank you for taking the time to share your ideas with Governor Patrick.  Stay involved and engaged…this is your government!

On the train. On our way back from Boston.

So these pictures are a bit dark  . . .  but considering they are our reflection in the train window taken from my phone I think these are great.  As was our trip.  

WBZ News Link.

http://wbztv.com/local/early.intervention.program.2.1529321.html

Be sure to click on the video with in this link as well.

Our trip to Boston to be heard!

Just back from Boston . . . will post more on this story later this evening.

We are going to Boston.

I have decided that I am taking Christopher with me.  More on that after our trip.

Letter to Governor & Director of Family Health and Nutrition

February 23, 2010

Governor Deval Patrick

State House Room 360

Boston, Ma. 02133

Ron Benham

Director, Bureau of Family Health and Nutrition

250 Washington St.

Boston, Ma. 02108

RE: Testimony for DPH Public Hearing on the Commonwealth’s 24th Year Grant Application Under Part C of IDEA - Proposed Eligibility and Parent Fee Changes to the Massachusetts Early Intervention Program

Dear Governor Patrick and Ron Benham, Director, Bureau of Family Health/ Nutrition:

My name is Jennifer Chabott and I am writing because I am extremely concerned about the drastic eligibility changes and massive parent fees you are currently proposing to the Massachusetts Early Intervention program. I understand that the Commonwealth is facing a severe fiscal crisis but to ask children and families that rely on Early Intervention services to bear the brunt of the budget shortfall is unfair and will cause severe economic hardship to families like mine. I also believe that it is rather short sited in that through these services Christopher is learning a classroom routine; he is learning how to communicate and how to get along

with his peers. These are crucial life skills that he will need once in public education. These proposed changes will mean that for many children they will not have had the benefit of learning these skills prior to public education and there for the money not spent through EI will then be required at an older age. Why not provide the funds at the younger age and possibly in some cases not then need additional support in school?

I want to tell you what the proposed eligibility and parent fee changes would mean for my family and our child Christopher diagnosed last fall with Autism. 

Our son Christopher has been receiving Early Intervention for since early May of 2009. In September 2009 the Autism team also began working with him through the guidance of the EI team. He currently has three team members that work with him weekly for near 4 hours per week and the Autism team consists of 4 team members for near 14 hour per week.

Through the help and work of Early Intervention, Christopher has made a significant

transition from child care in NH nearer to my work to child care setting in MA in order to accommodate

services. This transition has impacted our daily lives in many ways. Financially the cost is greater

as we have to rely on and pay for a nanny to assist in the times he is not in child care and for transport.

My income has been cut drastically due to the reduction in hours that I can work in order to

provide the structure and care he needs to access these services. Leaving my job is not an option as it

provides for our family the much needed insurance coverage that helps to pay for these services. As it

stands today every week that I work it costs me 75 dollars more than I earn to pay for our medical, and

child care providers, this doesn’t include my travel expenses. All that said we, my husband and I,

continue to do what it takes to ensure that Christopher continues to get these services because we believe and have seen the strides he has made from the benefit of this service team. I believe that every child’s story is a complicated story; so much happens in such short period of their young lives that every day counts. For Christopher the complication began with a severe croup attack resulting in a life flight to Worcester

Umass Memorial Hospital at just 7 months old. Four days of intubation and a full week in the ICU. When he returned home all mile stones had been lost. Two months later mostly back up to speed. But then it was ear troubles, he wasn’t speaking. We went the route of hearing tests and even ear tubes. Still no improvement. At 19 months old we began the difficult task of exploring that there was more to this than ears. Once that ball

began to roll it all became a blur. In April we were told that he had the signs of Autism. It was a bumpy and challenging road from there to get a definite diagnosis from Baystate Medical in Springfield MA where we met several times with Dr Dredge – finally in August we had the diagnosis. The process is long to determine, it is hard, it is heart wrenching, it is a blessing, it is forever. 

At this point all the help we can get to manage the needs of his care for an improved self and a better understanding is critical for his future and our family. Through theses service not only does he thrive but we as a family are guided towards building a foundation for which we understand his needs, his challenges, and how best to keep him safe. I can’t imagine if these services where not available to him the struggles we would be facing alone. Christopher’s delay would have possibly kept these services unavailable to him. First off the testing takes time and is subject to the type of day a child may have, who’s providing the assessment, and who’s interpreting the results? I was very skeptical of this process in its accuracy because Christopher seemed to have such a random way that he placed with in the typical findings. He had some words, but

not many, explained off at first as a hearing issue, later ruled out. He had good motor skills, but refused to do some things. He is sensory scatter, doesn’t mind loud noises, and didn't even used to look; now he does. He will only wear certain clothes because of how they feel. He has a very limited diet, still not completely sure if this is sensory issue for the food texture, and or temp. We struggle each day. Yet each day we love him more

and the little crazy things he now does and says to us. We are very appreciative of all the hard work and support that our EI team provides us each week for the benefit of Christopher’s well being. I just simply can’t imagine these service not being available to him either because he didn’t meet the increased delay requirements or because of the increased costs.

I urge you to work closely with the Massachusetts Early Intervention Consortium and the plan they have developed to address the EI budget shortfall in a way that is more fair and balanced and will preserve eligibility and minimize the impact on children and families like mine.

Thank you for your time and consideration.

Sincerely,
Jennifer Chabott

“Christopher’s Mom”