Florida Responds To Questions About Rising Autism Rates

Florida has responded to the questions I sent out to various governors around the country. Here are the questions that I asked and a copy of the email letter in response to them.

1. When the CDC announced the new autism rates, 1 in 110 children are diagnosed with autism, what were your first thoughts?

2. Services for children with autism are limited and difficult to receive. Most are limited to speech, occupational and speech therapy, yet hardly ever enough of these services to make a big impact for our children. Services like ABA and Floortime therapy are usually not available for our children unless we, the parents, pay for them ourselves. Children that receive at least 20 to 25 hours a week of specialized therapy make more progress than those that do not. What do you intend to do to make government paid specialized therapy services available for our children?

3. Early Intervention is extremely important. Do you have any plans for improving the identification and diagnosis of autism and an earlier age?

4. Autism families need a voice within the government. There are several great organizations that lobby and advocate for us, but we need government officials to take up our cause. Do you have any plans to stand up as a voice for the autism community and bring about more government involvement in addressing the concerns of families raising a child with autism and bringing about practical help for us?

5. Finally, have you considered the time when our children are adults and will require even more help? As parents, we like to think that we will always be here for our children. As our children get older, we realize that soon they will be adults and may become dependent on the government for their care. Do you have any plans to address this issue?



March 1, 2010


Dear Ms. Lessick,

Thank you for your recent letter to Governor Crist. He has asked that the Agency for Persons with Disabilities respond in order to provide you with a more specific and detailed response.

1. There are growing concerns regarding the high autism prevalence rates across the nation. In Florida, the Governor’s Task Force on Autism Spectrum Disorders was created to be more responsive to these concerns.

2. In response to concerns that certain treatments for autism were not covered and incurred out-of-pocket expenses for families, the Florida Legislature passed, and the Governor signed into law, SB 2654, which provides enhanced coverage for certain autism therapies under eligible plans. As the State determines the impact of this legislation, we will continue to explore options to minimize the burden on Florida’s families. Additionally, a child with autism may be eligible for services through the Agency for Persons with Disabilities. A person is determined to qualify for these services based on criteria established by the Florida Legislature, or criteria established by Medicaid. You can learn more about these services and eligibility by viewing the APD Resource Manual at: http://www.apd.myflorida.com/legislative/2007-legislative/apd-resource-manual-2007.pdf

3. Strategies for the early identification and diagnosis of autism must carefully be developed and considered. For this reason, the Window of Opportunity Act (SB 2654) was passed into law. Designed to reach more children affected by autism, SB 2654 requires large group health insurance plans to provide coverage for diagnostic screening. In addition, the Department of Health’s Children’s Medical Services administers the Early Steps program which offers early intervention services to infants and toddlers with special needs. Services are provided by local Early Steps offices across the state of Florida. You can read more about Early Steps by visiting http://www.cms-kids.com/index.html.

4. Recently, autism has received increased attention by the Executive and Legislative branches in the last three (3) years. I encourage your readers to contact your state representative in the Florida Legislature to express your thoughts and ideas regarding the government’s role in the lives of people affected by autism. You can locate your representative by visiting http://www.leg.state.fl.us

I also encourage you to look at the work being done by the Governor’s Task Force on Autism Spectrum Disorders, which was created in March 2008 through Executive Order 08-36. The Task Force was created to advance public policy for the research, screening, education, and treatment of autism, to assess the availability of insurance coverage for appropriate treatment of autism, and to recommend a unified and coordinated agenda for addressing autism in Florida. More information on the Task Force and a copy of their 2009 report is found at www.healthyfloridians.com/autism.html.

5. It is important to explore the needs of individuals across the lifespan. This includes issues of transitional periods, independence, and assistance when caregivers age. The Florida Department of Elder Affairs is the agency responsible for administering human services programs for the elderly (Section 430.03 Florida Statutes). Its purpose is to serve elders in all ways to help them keep their self-sufficiency and self-determination. Additionally, the Agency for Persons with Disabilities provides services to aging persons with developmental disabilities. Depending on various factors, financial and otherwise, an individual who lacks a caregiver and is affected by autism may qualify for Medicaid assistance. A comprehensive summary of Medicaid services is published by the Agency for Health Care Administration and can be found at http://www.fdhc.state.fl.us/Medicaid/pdffiles/SS_10_100105_SOS.pdf.


We will continue to explore ways to provide better services for Floridians of all ages, with a goal of empowering families impacted by autism to obtain needed services and attain an improved quality of life.

Thank you for all that you do and for your support in helping all of Florida’s families impacted by autism.


Sincerely,



Tamara Yang Demko, J.D.
Chief of Staff

NY Governor Responds to Autism Questions

It took a while, but I finally received a response from the emails I sent to different Governors around the country. Unfortunately, Gov. David A. Patterson, NY, is not the one who replied. It was Ellen J. Anderson, M.S., Director, Center for Community Health, State of New York, Department of Health. It is a long, three page response, with answers to each of my questions.

You might want to go back and read the last post I did about emailing politicians for their opinions on autism. Here is the first question that I asked.

1. When the CDC announced the new autism rates, 1 in 110 children are diagnosed with autism, what were your first thoughts?

The response:
“During the past decade, there has been growing national awareness and concern about the increasing prevalence of ASD among young children. The recent findings from the CDC Autism Surveillance Network may be the result of a true increase in prevalence of ASD, improvements in the early identification and diagnosis of, improved reporting of diagnoses, or likely a combination of all of these factors.”

You can correct me if you think I am wrong, but that doesn’t read like an answer to my question. To me, it concedes that there is an increase in children being diagnosed, but that it may be because professionals are getting better at diagnosing. I wanted Gov. Patterson’s opinion and I received a non-answer from Ms. Anderson.

I’m not going to post the whole letter here, it is too long. I do want to point out information provided in the answer to the second question:

2. Services for children with autism are limited and difficult to receive. Most are limited to speech, occupational and speech therapy, yet hardly ever enough of these services to make a big impact for our children. Services like ABA and Floortime therapy are usually not available for our children unless we, the parents, pay for them ourselves. Children that receive at least 20 to 25 hours a week of specialized therapy make more progress than those that do not. What do you intend to do to make government paid specialized therapy services available for our children?

“Based on the available scientific evidence, the Autism/Pervasive Developmental Disorders CPG recommends behavioral intervention program for young children with autism. The NYS DOH will be completing a review and update of this guideline based on scientific research completed during the past decade.

The New York State Early Intervention Program currently provides reimbursement for ABA and, through clinical practice guideline, encourages families and providers to use ABA as the cornerstone of individualized family service plans for children with autism.”

Since she says it is through Early Intervention, I am assuming it is available for children ages birth through age three. These are the ages that the Early Intervention Program services. What about older chidren that have not received ABA and would benefit from it? I think it is great that NY is doing this, but I have seen that children older than the age of three are limited in the help they need.

My son would greatly benefit from ABA, but it is not a reimbursable therapy available for children in my state. At least NY is doing something. I am happy about that. I also encourage families in NY to look into this if they are not currently receiving ABA for their young child.

I would still like to see more responses from other states. I am disappointed that Gov. Patterson did not answer the first question, but am satisfied with Ms. Anderson’s answers to the other questions. She provided some useful information, especially on the ABA therapy available for young children. I hope that NY can be an example for other states and I hope that they will look into the fact that children over the age of three need help, too.

Reaching Out to the Government to Help Our Children

I do a lot of writing about what the government isn't doing to help our children. Now that the CDC has officially recognized autism as a major health concern, 1 in 110 children are diagnosed with autism, I thought it was time to reach out to our government and ask them directly for help.

I have sent out my first round of emails to different government officials. Each one said the same thing and asked the same questions. Because it is so close to Christmas, I don't expect a response from anyone immediately. Hopefully, after the holidays, someone will reply. I will continue sending out my emails each day until I have contacted everyone in a position to help.



Here is a copy of the email I sent and the list of who I have sent it out to today:


Thank you for taking time to read my email request for information. I am the owner and administrator of AutismLearningFelt, and online publication for parents raising a child with autism. My readers and I would like to know what you are doing to help us.

I have a few questions that I would like to ask you and hope you will respond. Your answers will be published on my website within a day or two of your response. Thank you again for your time.

1. When the CDC announced the new autism rates, 1 in 110 children are diagnosed with autism, what were your first thoughts?

2. Services for children with autism are limited and difficult to receive. Most are limited to speech, occupational and speech therapy, yet hardly ever enough of these services to make a big impact for our children. Services like ABA and Floortime therapy are usually not available for our children unless we, the parents, pay for them ourselves. Children that receive at least 20 to 25 hours a week of specialized therapy make more progress than those that do not. What do you intend to do to make government paid specialized therapy services available for our children?

3. Early Intervention is extremely important. Do you have any plans for improving the identification and diagnosis of autism and an earlier age?

4. Autism families need a voice within the government. There are several great organizations that lobby and advocate for us, but we need government officials to take up our cause. Do you have any plans to stand up as a voice for the autism community and bring about more government involvement in addressing the concerns of families raising a child with autism and bringing about practical help for us?

5. Finally, have you considered the time when our children are adults and will require even more help? As parents, we like to think that we will always be here for our children. As our children get older, we realize that soon they will be adults and may become dependent on the government for their care. Do you have any plans to address this issue?

Governor Bob Riley, Alabama
Governor Charlie Crist, FL
Gov. Bev Perdue, NC
Gov. David A. Patterson, NY
Gov. Chris Gregoire, WA
Gov. Martin O’Malley

Alexander, Lamar - (R - TN)
Barrasso, John - (R - WY)
Hagan, Kay R. - (D - NC)
Burr, Richard - (R - NC)
Boxer, Barbara - (D - CA)

Convicted Murderers Invited to Governor Perdue's Christmas Party

North Carolina Governor Beverly Perdue needs to step down. Her values and performance since becoming Governor are not acceptable. She hosted a Christmas party at the Governor’s Mansion and had convicted killers on the guest list. This is coming right off of her publicly admonishing the justice system for releasing convicted killers from jail.

How can this woman say she is tough on crime and yet invited these prisoners to attend a party at the Governor’s Mansion? They will be getting a better Christmas dinner than most of us. Ten of the convicted felons were convicted of murder or manslaughter.

This is awful. They say that tax payers money was not used for the party. That it was paid for by money that collected from rental fees when guests visited the mansion. In my opinion, the money would have been better used to invite families that are struggling. Governor Perdue needs to step down.

She has completely messed up our economy in North Carolina. She turned against state employees by going against her promises of taking care of them. Instead, she cut salaries, cut vacations, and eliminated jobs. She has turned her back on the people she was elected to serve. She has been Governor for too long. It is time for someone new to step in and repair the damage she has done.