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”