Aspies For Freedom

Full Version: More on the "Combating Autism Act of 2005"
You're currently viewing a stripped down version of our content. View the full version with proper formatting.
Here's more on this act, brought on by CAN and NAAR (I'll bring my 'highlights' in a few minutes) :

http://www.prnewswire.com/cgi-bin/storie...560&EDATE=

"WASHINGTON, May 19 /PRNewswire/ -- Landmark legislation that would
significantly increase and expand the federal government's response to autism,
a developmental disorder that affects a person's ability to communicate and
relate to others and that now affects as many as one of every 166 children in
America, was introduced yesterday by U.S. Congresswoman Mary Bono (R-CA), the
lead sponsor of the House bill and U.S. Congresswoman Diana DeGette (D-CO),
the original co-sponsor of the bill. The Combating Autism Act of 2005 (HR
2421) would authorize significant federal funds annually over the next five
years to combat autism through epidemiological research, screening,
intervention and education efforts
.
    "Autism is the fastest growing developmental disability in our nation,"
said Congresswoman Bono. "Fortunately, the medical community is responding by
increasing their efforts to effectively diagnose, treat and cure this
disorder.  Currently, both the cause and cure are unknown, often leaving
families with feelings of frustration and hopelessness.  The goal of this
legislation is to support the medical community by augmenting current federal
efforts by reauthorizing federal funding and allowing for better coordination
of the federal response to autism," added Bono.
    "The legislation introduced today will cut across federal agency lines to
more effectively fund autism epidemiological research and expand autism
treatment and early diagnosis. It is truly the result of the autism community
pulling together to focus the nation's attention on this public health
crisis,"
said Jonathan Shestack, co-founder of Cure Autism Now.  "In addition
to the leadership of Congresswomen Bono and DeGette, we have been working with
U.S. Congressmen Christopher Smith (R-NJ) and Mike Doyle (D-PA), the House
Autism Caucus Co-Chairman, encouraging them to seek the early endorsement of
this bill by the nearly 200 members of the House Autism Caucus.  Passage of
this legislation is critical as the incidence of autism continues to rise."
    "Right now, autism is a disorder that leaves families with far too many
questions and far too few answers.  While the medical community has made
important steps in addressing this disorder, there is still much more to be
done," said Rep. DeGette.  "That is why it is so critical that we put the full
weight of the federal government's scientific resources behind efforts to
develop better ways to diagnose, treat and hopefully cure autism."
    When the Children's Health Act, the first federal legislation addressing
autism, was passed in 2000, the Centers for Disease Control (CDC) stated the
prevalence of autism at 1 in 500 children in the United States. In 2004, the
CDC revised that figure to as many as 1 in 166.
    "We are thrilled to see Congresswomen Bono and DeGette spearheading this
critical endeavor in support of families of children with autism. The
Combating Autism Act of 2005 will have a striking impact on the autism
community," said Bob Wright, vice chairman, General Electric, and chairman and
CEO of NBC Universal and co-founder of Autism Speaks, a new initiative devoted
to education, funding, research and motivating private and governmental
resources. "As the grandparents of a child diagnosed with autism just last
year, my wife, Suzanne, and I -- along with the rest of the highly dedicated
autism community
-- are committed to seeing that this legislation is enacted."
    The Combating Autism Act of 2005 would provide grant programs for every
state to develop autism screening, early diagnosis and intervention programs
for children - perhaps the most important thing that could happen, short of a
cure.
  The Act also increases funds for CDC epidemiological surveillance
programs, and reauthorizes the Interagency Autism Coordinating Committee
(IACC), established in the Children's Health Act of 2000, to coordinate all
efforts within the Department of Health and Human Services concerning autism,
including activities carried out through the CDC.
    The introduction of the Combating Autism Act of 2005 could not have
happened without the hundreds of thousands of active parents and concerned
Americans around the country.
    "Unraveling the mysteries of autism demands a large, collaborative effort
on many fronts," said Prisca Chen Marvin, board chair of the National Alliance
for Autism Research (NAAR) and the mother of a child with autism. "This
legislation is critical to our ability to continue advancing our search for
answers -- for children and families today and for future generations."

    About Autism
    Autism is a neuro-developmental disorder that now affects as many as 1 in
every 166 children in the United States. Autism is commonly diagnosed by the
age of three, and in some cases, as early as one year. Characterized by
varying degrees of impairment in communication skills, social interactions,
and restricted, repetitive and stereotyped patterns of behavior, children with
autism can exhibit symptoms that run mild to severe with widely differing
symptom profiles.

    About Cure Autism Now
    The Cure Autism Now Foundation is a nonprofit organization dedicated to
promoting and funding autism research, and accelerating the pace of scientific
progress toward effective treatments and a cure. Cure Autism Now is one of the
largest private funders of biological research on autism, providing more than
$24 million for research grants, outreach and scientific resources since its
inception in 1995. During that time, it has established and supported the
Autism Genetic Resource Exchange (AGRE), as well as numerous outreach and
awareness initiatives aimed at families, physicians, governmental officials
and the general public. More information about Cure Autism Now can be found at
http://www.cureautismnow.org/ .

    About Autism Speaks
    Autism Speaks is a new initiative devoted to educating the public about
autism, facilitating and funding research, motivating private and governmental
resources, and, ultimately, finding a cure for autism. Co-founded by Bob
Wright, Vice Chairman of GE, and Chairman and CEO of NBC Universal, and his
wife, Suzanne, Autism Speaks recognizes the importance of a coordinated effort
to investigate the causes of autism, develop effective treatments, and
ultimately find a cure. More information about Autism Speaks can be found at
http://www.autismspeaks.org/.

    About the National Alliance for Autism Research
    Established in 1994, the National Alliance for Autism Research (NAAR) is
the first nonprofit organization in the country dedicated to funding and
accelerating biomedical research for autism spectrum disorders. The
organization was established by parents of children with autism, concerned
about the limited amount of funding for autism research. To date, NAAR has
committed $21.1 million in grants for biomedical research projects worldwide
that seek to find the causes, prevention, effective treatments and,
ultimately, cure for autism spectrum disorders. Additionally, NAAR was
instrumental in establishing the Autism Tissue Program, a parent-led brain
tissue donation program for autism research. More information about NAAR can
be found at http://www.naar.org/."
There powerful groups are trying to change the law, if they get a foothold it could be devastating.

"combat autism through epidemiological research, screening,
intervention and education efforts."

Combat, destroy, eradicate. If these words were about another minority group, people could see the negativity and potential for genocide.
I don't have a problem with trying to improve "education efforts" for students with autism in the public schools, but agree that this legislation sounds much too "cure" focused. That is very unfortunate when we could be spending time and money to develop quality educational programs for all students, and creating a society that is more accepting of diversity.

If you live in the U.S. and think it would be helpful to write to your representatives, you can look them up by entering your zip code at
http://www.house.gov/ or you can go directly to the e-mail page at http://www.house.gov/writerep/ . You'll need the last 4 digits of your zip code, which can be found at http://zip4.usps.com/zip4/welcome.jsp if you are unsure about what they are.

I've sent polite correspondence to my representatives before, and it has always been a positive experience. Does anyone think it will help in this case?
That seems like a good idea to me, I'm trying to convince a local alt. newspaper to write about it. (they write about things like injustice and bad laws, etc.)
Here's some information about the House Autism Caucus (bold is mine) :
Coalition for Autism Research and Education
Information and Updates

Dear Friends,

As you are aware, during the 107th Congress, Representative Chris Smith and I founded and co-chaired the first-ever Congressional Membership Organization dedicated to autism advocacy on Capitol Hill—The Coalition for Autism Research and Education (CARE). Over 180 Members of Congress from over 40 states joined this bipartisan and bicameral effort.

We still have much work to do, and thus both Rep. Smith and I are once again proud to serve as co-chairs for the Coalition for Autism Research and Education for the 108th Congress. As we continue to build support from both the House and Senate, I will update this list as new Members are added. If your Representative is not yet a Member, I encourage you to contact them directly and share your views on the importance of autism advocacy.

The goals of the bipartisan Coalition for Autism Research and Education will include, but are not limited to:

Increasing general awareness of autism and autism spectrum disorders among Members of Congress and policy analysts in federal government;

Educate Members of Congress on current and future research initiatives regarding autism;

Serve as a forum where autism-related policy issues can be exchanged, debated, and discussed;

Bring together public, private, and government entities to pursue legislative initiatives that will help facilitate advanced treatments—and ultimately a cure—for autism spectrum disorders.

Promote all means to ease the burdens of families and loved ones affected by autism
Click here for Current Issues or Legislation important to CARE Members

Click here for some Facts & Figures about autism and autism spectrum disorders

Please keep in mind that these are general goals for CARE. We are open to suggestions from the families, friends, and loved ones on the front lines of the war on autism. I want to personally thank each and every one of the parents and families who have dedicated themselves not only to their loved ones affected with autism, but also to raising awareness of the need for federal attention to this devastating and life-long disorder.

If you have any questions or would like additional information, please do not hesitate to contact my Washington DC office at (202) 225-2135.

Sincerely,

Mike Doyle
Member of Congress

_____________________
Members of CARE: (corrected list, the website spells many names wrong)
192 Members
1. Abercrombie, Neil (Hawaii) http://www.house.gov/abercrombie/

2. Acevido-Vila, Anibal (Puerto Rico) http://www.explore-biography.com/politic...il%E1.html

3. Ackerman, Gary (New York) http://www.house.gov/ackerman/

4. Aderholt, Robert (Alabama) http://aderholt.house.gov/NR/exeres/B686...B0866D.htm

5. Allen, Tom (Maine) http://www.tomallen.org/

6. Andrews, Rob (New Jersey) http://www.house.gov/andrews/

7. Baker, Richard (Louisiana) http://baker.house.gov/

8. Baldwin, Tammy (Wisconsin) http://tammybaldwin.house.gov/

9. Bartlett, Roscoe (Maryland) http://www.bartlett.house.gov/

10. Becerra, Xavier (California) http://becerra.house.gov/HoR/ca31/

11. Berkley, Shelley (Nevada) http://www.house.gov/berkley/

12. Biggert, Judy (Illinois) http://judybiggert.house.gov/

13. Bilirakis, Mike (Florida) http://www.house.gov/bilirakis/

14. Blumenauer, Earl (Oregon) http://blumenauer.house.gov/

15. Boehlert, Sherwood (New York) http://www.house.gov/boehlert/

16. Boswell, Leonard (Iowa) http://www.boswellforcongress.com/

17. Bordallo, Madeline (Guam) http://www.house.gov/bordallo/

18. Boucher, Rick (Virginia) http://www.house.gov/boucher/

19. Bradley, Jeb (New Hampshire) http://www.house.gov/bradley/

20. Brady, Robert (Pennsylvania) http://www.house.gov/robertbrady/

21. Brown, Corrine (Florida) http://www.house.gov/corrinebrown/

22. Brown, Sherrod (Ohio) http://www.house.gov/sherrodbrown/

23. Burgess, Michael (Texas) http://burgess.house.gov/

24. Burns, Max (Georgia) http://www.burnsforcongress.com/

25. Burton, Dan (Indiana) http://www.house.gov/burton/

26. Cantor, Eric (Virginia) http://cantor.house.gov/

27. Carson, Julia (Indiana) http://www.juliacarson.house.gov/

28. Capito, Shelley Moore (West Virginia) http://capito.house.gov/

29. Capps, Lois (California) http://www.house.gov/capps/

30. Capuano, Michael (MASSACHUSETTS) http://www.house.gov/capuano/

31. Castle, Michael (Delware) http://www.house.gov/castle/

32. Cheeks-Kilpatrick, Carolyn (Michigan) http://www.house.gov/kilpatrick/

33. Christensen, Donna (Virgin Islands) http://www.house.gov/christian-christensen/

34. Costello, Jerry (Illinois) http://www.house.gov/costello/

35. Cramer, Bud (Alabama) http://cramer.house.gov/

36. Crowley, Joe (New York) http://crowley.house.gov/

37. Cunningham, Randy “Duke” (Solano Beach) http://cunningham.house.gov/

38. Davis, Jim (Florida) http://www.house.gov/jimdavis/

39. Davis, Jo-Ann (Virginia) http://joanndavis.house.gov/

40. Davis, Lincoln (Tennessee) http://www.house.gov/lincolndavis/

41. Davis, Susan (California) http://www.house.gov/susandavis/

42. Davis, Tom (Washington D.C.) http://tomdavis.house.gov/index.shtml

43. DeFazio, Peter (Oregon) http://www.house.gov/defazio/

44. Doggett, Lloyd (Texas) http://www.house.gov/doggett/

45. Doyle, Mike (Chairman) (Pennsylvania) http://www.house.gov/doyle/

46. Duncan, John (Tennessee) http://www.house.gov/duncan/

47. Engel, Eliot (New York) http://www.house.gov/engel/

48. English, Phil (Pennsylvania) http://www.house.gov/english/

49. Evans, Lane (Illinois) http://www.house.gov/evans/

50. Ferguson, Mike (New Jersey) http://www.house.gov/ferguson/

51. Filner, Bob (Calfornia) http://www.house.gov/filner/

52. Fletcher, Ernie (Kentucky) http://governor.ky.gov/

53. Foley, Mark (Florida) http://www.house.gov/foley/

54. Fossella, Vito (New York) http://www.house.gov/fossella/

55. Frank, Barney (MASSACHUSETTS) http://www.house.gov/frank/

56. Frost, Martin (Texas) http://www.martinfrost.com/

57. Gallegly, Elton (California) http://www.house.gov/gallegly/

58. Gerlach, Jim (Pennsylvania) http://gerlach.house.gov/

59. Gilchrest, Wayne (Maryland) http://gilchrest.house.gov/

60. Gingrey, Phil (Maryland) http://gingrey.house.gov/

61. Goode, Virgil (Virginia) http://www.house.gov/goode/

62. Goodlatte, Bob (Virginia) http://www.house.gov/goodlatte/

63. Granger, Kay (Texas) http://kaygranger.house.gov/

64. Green, Gene (Texas) http://www.house.gov/green/

65. Green, Mark (Wisconsin) http://www.house.gov/markgreen/

66. Greenwood, James (Pennsylvania) http://www.namebase.org/xgre/James-C-_28...nwood.html

67. Harris, Katherine
68. Hart, Melissa
69. Hastings, Alcee
70. Hayworth, J.D.
71. Hinchey, Maurice
72. Hoeffel, Joseph
73. Holden, Tim
74. Holt Rush,
75. Hooley, Darlene
76. Houghton, Amo
77. Isakson, Johnny
78. Israel, Steve
79. Jenkins, William
80. John, Chris
81. Kaptur, Marcy
82. Kennedy, Mark
83. Kennedy, Patrick
84. Kildee, Dale
85. Kind, Ron
86. King, Peter
87. Kirk, Mark Steven
88. Knollenberg, Joe
89. LaHood, Ray
90. Lampson, Nick
91. Langevin, Jim
92. Lantos, Tom
93. Larsen, Rick
94. Larson, John
95. LaTourette, Steven
96. Leach, James
97. Levin, Sander
98. LoBiondo, Frank
99. Lofgren, Zoe
100. Lowey, Nita
101. Lucas, Ken
102. Lynch, Steven
103. McCarthy, Carolyn
104. McCotter, Thaddeus
105. McGovern, Jim
106. McHugh, John
107. McInnis, Scott
108. McKeon, Buck
109. McNulty, Michael
110. Maloney, Carolyn
111. Markey, Ed
112. Matheson, Jim
113. Meeks, Gregory
114. Meehan, Martin
115. Menendez, Robert
116. Michaud, Michael
117. Mollohan, Alan
118. Moran, Jim
119. Musgrave, Marilyn
120. Nadler, Jerold
121. Napolitano, Grace
122. Neal, Richard
123. Nethercutt, George
124. Northup, Anne
125. Olver, John
126. Oxley, Michael
127. Pallone, Frank
128. Pascrell, Bill
129. Payne, Donald
130. Peterson, Colin – Robin Goracke
131. Peterson, John
132. Pickering, Charles
133. Platts, Todd
134. Pomeroy, Earl
135. Price, David
136. Putnam, Adam
137. Quinn, Jack
138. Rahall, Nick
139. Ramstad, Jim
140. Reyes, Silvestre
141. Rogers, Mike
142. Ros-Lehtinen, Illena
143. Rothman, Steve
144. Ryan, Timothy
145. Ryun, Jim
146. Sanchez, Loretta
147. Sanchez, Linda
148. Sanders, Bernie
149. Saxton, Jim
150. Schiff, Adam
151. Sessions, Peter
152. Shaw, Clay
153. Shays, Christopher
154. Sherwood, Don
155. Simmons, Rob
156. Slaughter, Louise
157. Smith, Chris (Chairman)
158. Snyder, Vic
159. Strickland, Ted
160. Stupak, Bart
161. Tancredo, Thomas
162. Taylor, Charles
163. Taylor, Gene
164. Terry, Lee
165. Thompson, Bennie
166. Tiberi, Pat
167. Tierney, John
168. Toomey, Pat
169. Tubbs-Jones, Stephanie
170. Turner, Jim
171. Udall, Tom
172. Upton, Fred
173. Van Hollen, Chris
174. Vitter, David
175. Wamp, Zach
176. Waxman, Henry
177. Weiner, Anthony
178. Weldon, Dave
179. Weller, Jerry
180. Wexler, Robert
181. Wicker, Roger
182. Wilson, Joe
183. Wolf, Frank
184. Woolsey, Lynn
185. Wu, David
186. Wynn, Al
187. Senator Diane Feinstein
188. Senator Maria Cantwell
189. Senator Hillary Rodham Clinton
190. Senator Charles Schumer
191. Senator Tom Daschle
192. Senator Jim Talent


I say we should try to write to *all* of the members and explain our position. At least some should be open to the idea, and if provided with alternative information to CAN and NAAR they might change their minds. It's worth a try, 1 out of 192 is better than 0 out of 192.
I've drafted a sample letter. Please feel free to use parts of it or modify it to fit what you would like to say and e-mail it to your representative. Or let me know how you think it could be improved.  

I think the more of us that write, the better!

-----------------------------------------------------------------
Dear Congressman or Congresswoman [LAST NAME]:

As your constituent, I am writing to you concerning HR 2421, the “Combating Autism Act of 2005,” which, as I understand, is aimed at providing federal funds to “combat autism through epidemiological research, screening, intervention and education efforts.”

As a [parent, teacher, autistic person, concerned citizen, etc.], I appreciate the efforts to raise awareness, but am concerned about certain aspects of this legislation.

Congresswoman Mary Bono, the lead sponsor of this bill has stated that, “Autism is the fastest growing developmental disability in our nation. Fortunately, the medical community is responding by increasing their efforts to effectively diagnose, treat and cure this disorder” and that the purpose of the current legislation is to “support the medical community by augmenting current federal efforts.”

Although I support efforts to provide effective diagnosis and quality educational programs, five words in the above statement prevent me from supporting this bill: “treat and cure this disorder.” Myself, and many others view persons with autism and other “disabilities” as unique individuals who have, as Tony Attwood stated about persons with Asperger’s Syndrome, “a different, not defective, way of thinking” and experiencing the world. They [or We] are not “broken,” and therefore do not need to be “fixed” or “cured.”

There are many notable persons with autism that credit their neurological differences to their success in their area of expertise. First to come to mind is Dr. Temple Grandin, a noted expert in the field of livestock handling who has designed commonly used cattle processing facilities that are more humane than what has been used in the past.

Also worth noting is 2002 Nobel Laureate in Economics Vernon Smith, who credits Asperger Syndrome (which is considered by many to be on the autism spectrum) with his ability to concentrate. He says that this contributed to his ability to win the Nobel Prize.

Many historical figures such as Albert Einstein, Emily Dickinson, and Thomas Edison (and many others), have also been thought by some to have some form of autism.

I believe that neurological differences such as autism are something to be accepted, welcomed, and valued in society, not "cured." On the other hand, I do understand the challenges that many teachers, parents, and autistic persons face.

I would support autism legislation aimed at improving public education and services for students with autism. I believe that teachers and parents of students at all age levels need additional research, support, and training to develop quality educational programs. Awareness and information needs to be provided to all teachers, "regular" and special education college students (future teachers), parents, and to the general public. I believe that this nation has made great progress in welcoming the diversity that makes it strong. Let’s continue the trend by supporting, not “curing,” persons with this form of diversity.


Thank you for your time and consideration.

Sincerely,
I found some additional information on the Senate version of this bill in the article from CAN that you linked Catffienated.

My letter referenced the House version. You can contact your senators by e-mail at http://www.senate.gov/

-----------------------------------------------------------------------------------

"Senators Rick Santorum (R-PA) and Christopher Dodd (D-CT) introduced the Combating Autism Act of 2005 (S.843), a bipartisan bill that could significantly expand the federal government's response to the autism epidemic, nearly one month ago. Thousands of families have voiced their support of this legislation and four additional Senators have signed on as co-sponsors...

The Combating Autism Act has been co-sponsored by Sen. Maria Cantwell (D-WA), Sen. Jon Corzine (D-NJ), Sen. Frank Lautenberg (D-NJ), and Sen. Joseph Lieberman (D-CT). If any of these are your Senators, please thank them. If your Senators are not listed here, please encourage them to co-sponsor this bill. A phone call is best, a fax or letter is great, and an email will send the message as well. It doesn't matter what political party you belong to; what matters is that we are all united in our effort to combat autism. We were successful in 2000, and we can be successful again. Please go to http://www.autismbill.org for information and tools to help you contact your Senators."

-----------------------------------------------------------------------------------
I know that people are simply trying to help their children, but it is very uncomfortable for me to read.
I like your letter, and also that link is helpful. The funny thing is, the people intend for people to use that site to *Support* the bill while it can be used to contact the sponsors of the bill and tell them we *don't* like it!  :lol: But all laughing aside, yes, we need to start a letter campaign. Please, everybody, take a moment and fire off (not literally!) a letter, even if by e-mail! These people are trying to fix us when we're not broken!
Just another note....did anybody notice John Kerry is listed as a co-sponser of S.843? I hate Bush, but Kerry isn't any better.  :roll:
For anybody interested, I started a page as kind of the anti-Autismbill.org; it's here: http://notocombatingautism.4t.com It's a work in progress, and I have my reasons for hosting it on Freeservers. (Trust me on this one)
Site looks good so far Cat. Would you like to join autism assembly with it?
http://www.autism-assembly.com
Yep, I'm joining as soon as I add the final touchs.  :grin:
Catffienated, the site looks great and very professional! I'm really glad that people will be able to find it and take action. Great work!

I'm wondering, do you think that a second version of the letter to address the Senate version of the bill (S.843) and directing people to http://www.senate.gov/ is necessary? I guess people could just substitute "S.843" for "HR 2421" in the original, so mayby having two isn't needed.

And thank you for including the letter, by the way. I hope it sounds okay.  :grin:
Thank *you*! The letter is very good and makes the point clear. Smile I'm glad you don't mind me including it. On another note...anybody here have a website to list as a supporter? I tried to start an online petition as well, but it wouldn't work.  :shock: I'm all excited about this. Smile
Pages: 1 2
Reference URL's