Noticias e Investigación

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Si usted tiene alguna sugerencia para la website, comuníquese con nosotros en mail@etdsg.org

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Posted July 26, 2007 **denotes new items

** Community Integration Advocates ~ RecruitmentFlyerforAdvocates.pdf

Action Needed - Submit Comments on Part C of IDEA	More Info
A Joint Alert from the National Down Syndrome Society and National Down Syndrome Congress

July 18, 2007 On May 9, 2007 the federal proposed regulations for Part C of IDEA, Early Intervention Program for Infants and Toddlers With Disabilities, were released. Public comments on these proposed regulations are due by July 23, 2007. We urge you to submit comments, individually or from your affiliate group. Comments can no longer be submitted by e-mail or fax. At the end of this alert, we will give you instructions on how to submit comments. You can simply state your support for the joint NDSS and NDSC comments submitted on July 16, 2007 or you can select a few issues from the summary of our recommendations to comment on. The more you personalize your comments, the more attention they will receive. To read a summary of the NDSS and NDSC recommendations or for the full text of comments go to http://www.ndss.org/index.php?option=com_wrapper&Itemid=130 Some concerns with the proposed regulations: The availability of sign language services seems to be limited to children who are deaf or hard of hearing even though many young children with Down syndrome who are not deaf or hard of hearing use sign language to communicate. Nursing and nutrition services are no longer listed as early intervention services. There seems to be a shift to the family coordinating services with assistance from the case manager instead of the case manager doing the coordinating. We need to ensure that the natural environments provisions make a strong statement about the presumption that a child will receive services at home or in inclusive settings. Parents who are considering whether to keep their child in the infant and toddler program with an IFSP after age 3, rather than develop an IEP, are informed about the Part C procedural safeguards but not the differences between the procedural safeguards that would apply to an IFSP as compared to an IEP. States now have the option to allow a child to stay under Part C until he or she enters or is eligible to enter kindergarten or elementary school. There are changes to the timelines for referring a child for infant and toddler services and developing an IFSP that may cause delays in the provision of services. States would be permitted to have statutes allowing them to gain access to private health insurance without parental consent. Directions for submitting comments: To submit comments go to http://www.regulations.gov and go to the "Search Documents Section" on the homepage. Under step one "documents accepting comments" should be selected and under step 2 select Department of Education from the agency drop-down menu, then click Submit. On the next page look for the document called Early Intervention Program for Infants and Toddlers With Disabilities. To add public comments click on the yellow bubble above the date to the far right for that document, July 23, 2007. These steps will take you to the submission form. The only parts you are required to complete are "category" (parent, teacher, individual) and the box for the comments. If you have questions or comments about this alert, contact Ricki Sabia at rsabia@ndss.org.

If you or others you know would like to be added to the NDSS mailing list, send name(s) and email address to advocacy@ndss.org

National Down Syndrome Society
666 Broadway, New York, NY 10012
Phone: (800) 221-4602; Fax: (212) 979-2873

Web site: http://www.ndss.org

NDSS National Policy Center
8650 Georgia Avenue
Silver Spring, MD 20910
Phone: (800) 743-5657 Fax (301) 563-6896
e-mail: advocacy@ndss.org

Our mission is to benefit people with Down syndrome and their families
through national leadership in education, research and advocacy.

** A great benefit from the National Forestry & Wildlife Division. You may or may not know about. It is a free lifetime access pass for any person with a disability or for the caregivers of a person with a disability. It allows access to ALL national parks for free.

All that is required is a letter from the physician stating the disability and you take it to your local National Forestry & Wildlife Division to get the pass. Each pass will admit up to 4 adults and children under 16 are always free. This link answers all the questions:
http://store. usgs.gov/ pass/access. html

Please read the following press release from Sen. Zaffirini's office. Although it was originally posted on April 26th, the topic is still timely. We ask that you share the release AND the attachments with your networks, legislators, and local media. The attached documents detail the DADS Waiting Lists numbers per legislative districts.

Thank you!

FOR IMMEDIATE RELEASE Contact: Nick Almanza

April 26, 2007 512/463-0121

Senator Zaffirini, The Arc of Texas

Prioritize Reducing Health and Human Services Waiting Lists

(AUSTIN) — As Senate and House appropriations conferees prepare to reconcile the $153 billion state budget, Senator Judith Zaffirini, D-Laredo, and the Arc of Texas today (Thursday) released details about Texans in each Senate and House district currently on waiting lists for community-based Medicaid waiver program services. As vice chair of Senate Finance, Senator Zaffirini prioritizes reducing community-based Medicaid waiver program waiting lists. As an appropriations conferee, she will continue to work to increase funding to provide the maximum reduction of waiting lists.

"I appreciate greatly the hard work of the Arc of Texas in compiling information that allows each Senate and House member to see precisely how many of their constituents are waiting to receive care," Senator Zaffirini said. "The appropriations conferees must focus on allocating the maximum funds available to reduce the waiting lists, and this information will assist greatly by underscoring the significance of this issue."

Currently more than 90,000 Texans are on waiting lists for community-based, home services and care. The Senate version of the state budget includes $107.1 million to reduce these waiting lists. $75 million also is included in the Senate version's Article XI "wish list." The Senate's $107.1 million potentially would bring approximately 8,000 persons into Medicaid.

Senate Finance Committee members named by Lt. Governor David Dewhurst to the appropriations conference committee are Senators Steve Ogden, R-Bryan, chair; Robert Duncan, R-Lubbock; John Whitmire, D-Houston; Tommy Williams, R-The Woodlands; and Zaffirini. More than 14,000 persons waiting for community-based care reside in their districts.

House Appropriations Committee members named by Speaker Tom Craddick to the appropriations conference committee are Representatives Warren Chisum, R-Pampa, chair; Ryan Guillen, D-Rio Grande City; Dan Gattis, R-Georgetown; Lois Kolkhorst, R-Brenham; and Sylvester Turner, D-Houston. More than 3,700 persons waiting for community-based care reside in their districts.

"My strong preference is to secure $893 million to eliminate waiting lists for all health and human services programs," Senator Zaffirini said. "The reality is that we don't have the votes to do that. Alternatively, we should do everything in our power to adopt a 10-year plan to eliminate waiting lists. This would be a $260 million investment in better access to health care. As the conferees prepare to negotiate the final version of the budget, it is my hope that legislators prioritize the needs of the many persons who reside in their Senate and House districts who are waiting to receive community-based health programs."

###

Attachments: Arc of Texas' data detailing persons on community-based Medicaid waiver program waiting lists per Senate and House district.

Waiting List Information Per House District

Waiting List Information Per Senate District

Subject: Supreme Court decision in Special Education case

Breaking News! On May 21, 2007, the Supreme Court ruled in Winkelman v. Parma City School District that parents may represent their children's interests in special education disputes, and do not need to hire an attorney. The Court held that parents have legal rights under the IDEA and can pursue IDEA issues on their own behalf, although they are not licensed attorneys.

National Down Syndrome Society Responds to American College of Obstetricians and Gynecologists’ New Recommendations for Prenatal Testing

NEW YORK, February 14, 2007 – The National Down Syndrome Society (NDSS), a nonprofit organization with more than 200 affiliates nationwide representing the more than 350,000 Americans with Down syndrome and their families, issued a resolution today in response to the American College of Obstetricians and Gynecologists’ (ACOG) recent recommendations that all pregnant women, regardless of their age, should be offered screening for Down syndrome. The resolution includes two call-to-action points:

· Challenging and strongly encouraging health care professionals and organizations like ACOG to partner with NDSS and other Down syndrome organizations to ensure the wide-spread proliferation of balanced, accurate and up-to-date information to expectant parents; and

· Urging health care professionals, policymakers, and the Down syndrome community to work together to ensure that expectant parents are not unduly influenced to undergo prenatal testing or to terminate a pregnancy after receiving a prenatal diagnosis of Down syndrome.

“At NDSS, we have always had strong, collaborative relationships with health care professionals, particularly through our advisory boards and our program Changing Lives: Down Syndrome and the Health Care Professional,” said Pam van der Lee, Chair of the NDSS Board of Directors. “In cooperation with other Down syndrome organizations, we hope to expand and enhance these partnerships going forward, while continuing to be a voice and advocate for the Down syndrome community.” Other Down syndrome organizations in the U.S. and internationally have issued statements in recent weeks about the ACOG recommendations. NDSS is committed to working with these groups to express our collective concerns about the new guidelines and address these pressing issues facing the Down syndrome community. Following is the full text of the NDSS resolution on the American College of Obstetricians and Gynecologists recommendations regarding prenatal testing for Down syndrome:

1. Whereas, The National Down Syndrome Society (NDSS) is the nation's largest organization devoted to helping people with Down syndrome and their families,

2. Whereas, NDSS strives to assist people with Down syndrome and their families through national leadership in education, research and advocacy,

3. Whereas, the NDSS and its members value the lives and contribution of people with Down syndrome, as well as all people with disabilities, and affirms a vision of a diverse and inclusive society in which human rights are respected and differences are celebrated,

4. Whereas, the American College of Obstetricians and Gynecologists has recently recommended that all pregnant women be offered prenatal screening for Down syndrome,

5. Whereas studies have shown that the information given pregnant women about Down syndrome is frequently incomplete, and often neglects to recognize the rich and fulfilling lives that are possible for people with disabilities,

6. Whereas the Board of the National Down Syndrome Society challenges and strongly encourages health care professionals and organizations like ACOG to partner with NDSS and other Down syndrome organizations to ensure the wide-spread proliferation of balanced, accurate and up-to-date information to expectant parents,

7. Whereas a prenatal diagnosis of Down syndrome does not mean that the fetus should be terminated,

8. Be it resolved, therefore, that the Board of the National Down Syndrome Society urges health care professionals, policymakers, and the Down syndrome community to work together to ensure that expectant parents are not unduly influenced to undergo prenatal testing or to terminate a pregnancy after receiving a prenatal diagnosis of Down syndrome.

After careful review of ACOG Practice Bulletin 77, the NDSC has issued the following statement:

FOR IMMEDIATE RELEASE

Contact: David Tolleson
770/604-9500
January 23, 2007
ATLANTA - The National Down Syndrome Congress (NDSC) condemns recent recommendations by the American College of Obstetricians and Gynecologists (ACOG) that convey tacit approval for terminating pregnancies where the fetus has Down syndrome.

The recommendation for first trimester screening of all pregnant women is a change from the current practice of primarily screening women over age 35 who have a higher probability of having a baby with Down syndrome. Women under age 35 are also being screened, often without their full knowledge or consent.

Among the concerns cited by the medical doctors comprising NDSC's Professional Advisory Committee:

* The primary medical reason for first trimester screening is to encourage earlier diagnostic testing in "at risk" pregnancies, in order to facilitate early terminations. Other reasons for prenatal diagnosis, such as hospital selection and delivery management, do not require first trimester testing.

* Based on ACOG's figures, the recommended screenings will produce numerous false positives, potentially leading to unnecessary patient distress and possible termination of pregnancies where medical concerns do not exist.

* All screening or diagnostic tests need to be fully explained to patients, who should be provided the opportunity to decline or give their informed consent for testing. If patients decline certain tests, physicians and other medical personnel should respect the individual's wishes and not overtly or covertly pressure patients to undergo undesired screenings.

* Recent studies by Dr. Brian Skotko, published in the American Journal of Obstetrics and Gynecology (2005) and Pediatrics (2005) note that many doctors are inadequately prepared to deliver a diagnosis of Down syndrome, and often use negative language or out-of-date information. ACOG's recommendations do not address this situation, nor how it will be corrected.

* Studies have shown that parents and siblings of children with Down syndrome overwhelmingly report that having a family member with that diagnosis has been a good situation. Early intervention and inclusive education have led to largely positive outcomes for children with Down syndrome. It is unacceptable that many obstetricians present negatives -- and seem to emphasize pregnancy termination -- rather than reporting the facts, which paint a much more positive picture.

* Parents who receive a diagnosis that their fetus has Down syndrome should have the opportunity to meet a family that includes a person with the syndrome, a move in keeping with the spirit of the Kennedy-Brownback bill.

NDSC Executive Director David Tolleson notes that "Down syndrome is a serious diagnosis; however we have seen families thrive." "We empathize with obstetricians who fear `wrongful life' lawsuits," Tolleson adds, "but the cure for that problem is tort reform, not preventing the births of a whole class of people."

Jeff Mattson, a man with Down syndrome, agrees: "People with Down syndrome want to live life to the fullest."

According to Tolleson, "the NDSC is here to support doctors in delivering a diagnosis and parents through the pregnancy, birth and life of their child."