The Policy Center
The Policy Center provides links to current bills and legislation that affects individuals with Down syndrome. You can make a difference by taking any action steps requested within each current issue.
Want to find your Elected Officials? Click here.
Urgent Policy Alert
Bill would permit locking special education students in isolation
Calls and emails needed by Tuesday (2/9/10) afternoon to sponsors & committee members.
Legislation may be heard in the House Education K-12 Subcommittee on Wednesday, February 10th at 10am that would allow Special Education students to be locked alone in a room. This would undo two years of work that outlawed locking students with Autism, Down syndrome, ADHD, and other disabilities in isolation rooms. If your legislator sits on this subcommittee we are asking you to make a call or send an email opposing House Bill 2538 by Tuesday. A list of subcommittee members and bill sponsors, the areas they serve and their contact information is below.
When contacting your legislators please be respectful and let them know that you live in their district. You should only call committee members/sponsors if they represent your district.
Key Points
- This bill would make it legal to lock a special education student – of any age or diagnosis – in isolation at risk to their health and safety
- Contradicts health and safety codes that prohibit locking students in an educational facility without a way out
- A child could be locked in an isolation room without parental notification
- There is no requirement in the bill that locked isolation only be used in an emergency situations
- With a locked door, a student is trapped with no mechanism to call for help if they are forgotten – even for a minute or two – by school personnel
- Places all special education students at risk of locked isolation
For more information contact the Coalition at news@tndisability.org
Bill Sponsors of HB 2538/SB 2517
Rep. Glen Casada mailto:rep.glen.casada@capitol.tn.gov
R-63 - Parts of Williamson Co.
(615) 741-4389
Sen. Jack Johnson mailto:sen.jack.johnson@capitol.tn.gov
R-23 - Williamson and parts of Davidson
(615) 741-2495
House Education, K-12 Subcommittee
*represents part of a county
Les Winningham mailto:rep.leslie.winningham@capitol.tn.gov, Chair
D-38 - Clay, Jackson, Picket, Scott and Anderson*
(423) 286-9090
Ron Lollar mailto:rep.ron.lollar@capitol.tn.gov, Vice-Chair
R-99 - Shelby*
(615) 741-7084
Judy Barker mailto:rep.judy.barker@capitol.tn.gov
D-77 - Obion, Lake, Dyer*
(615) 741-0718
Tommie Brown mailto:rep.tommie.brown@capitol.tn.gov
D-28 - Hamilton*
(615) 741-4374
Bill Dunn mailto:rep.bill.dunn@capitol.tn.gov
R-16 - Knox*
(615) 741-1721
Beth Harwell mailto:rep.beth.harwell@capitol.tn.gov
R-56 - Davidson*
(615) 741-0709
David Hawk mailto:rep.david.hawk@capitol.tn.gov
R-5 - Unicoi, Greene*
(615) 741-7482
Joey Hensley mailto:rep.joey.hensley@capitol.tn.gov
R-70 - Lawrence, Lewis, Wayne*
(615) 741-7476
Ulysses Jones mailto:rep.ulysses.jones@capitol.tn.gov
D-98 - Shelby*
(615) 741-4575
Mark Maddox mailto:rep.mark.maddox@capitol.tn.gov
D-76 - Weakly, Carroll*
(615) 741-7847
Johnnie Turner mailto:rep.johnnie.turner@capitol.tn.gov
D-85 - Shelby*
(615) 741-6954
Terri Lynn Weaver mailto:rep.terri.lynn.weaver@capitol.tn.gov
R-40 - DeKalb, Smith, Macon
(615) 741-2192
21 Act (S. 1762/H. 3656)
Senators Brownback (R-KS) and Sherrod Brown (D-OH) and Representatives Cathy McMorris Rodgers (R-WA), Patrick Kennedy (D-RI), and Pete Sessions (R-TX) introduced the Trisomy 21 Translational Research Parity Act of 2009 (S. 1762/H. 3656) or the "21 Act." The 21 Act (S. 1762/H. 3656) is aimed at expanding, intensifying and coordinating Down syndrome translational research across the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC) and other Federal agencies. Specifically, this legislation would:
- Create at least six Down Syndrome Translational Research Centers of Excellence that provide an optimal venue and infrastructure for patient-oriented research, and conduct basic, clinical, and translational research on Down syndrome.
- Establish a Down Syndrome Coordinating Committee to coordinate activities across the National Institutes of Health (NIH) and with other Federal health programs and activities relating to Down syndrome.
- Develop a National Down Syndrome Patient Registry and Biobank, through cooperative agreements at the Centers for Disease Control and Prevention (CDC), to:
- Provide clinical care for patients with Down syndrome;
- Coordinate research and clinical activities through the Down Syndrome Translational Research Centers of Excellence with
the activities of the National Down Syndrome Registry and Biobank; and
- Create a common data entry and management system for Down syndrome patient data collection and analysis.
ACTION NEEDED: It is very important for us to identify more cosponsors for the legislation. Please take a few minutes to call or write your Senators and Representative today to ask them to cosponsor 21 Act! You can reach your Representative by calling the Capitol Switchboard at 202-224-3121. If you don't know who your Representative is, go to www.congress.org and enter your zip code in the upper right corner.
ABLE ACT OF 2009
On February 26 and 27th, Senators Casey (D-PA), Hatch (R-UT), Dodd (D-CT), Kennedy (D-MA), Brownback (R-KS), and Burr (R-NC) and Representatives Crenshaw (R-FL), Meek (D-FL), Kennedy (D-RI), and McMorris Rodgers (R-WA) introduced the Achieving a Better Life Experience Act (ABLE) of 2009 (S 493/HR 1205). This bill was formerly known as Financial Security Accounts for Individuals with Disabilities (FSAID).
If this bill becomes law, it will allow an account to be held in the name of the individual with a disability. Currently, $2000 is the asset limit for individuals receiving benefits under federal programs such as Medicaid, the primary source of funding for long-term support services for adults with disabilities, and SSI.
The legislation prohibits amounts held by, or paid or distributed from any ABLE accounts from being treated as income or assets when determining eligibility for benefits provide by any federal benefits program. The intent of the legislation is to supplement rather than replace benefits provided by other sources.
The account could fund a variety of essential expenses for the individual, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation. In addition, money earned on the principal of the trust would not be taxable which means that it can grow tax free. The accounts have a contribution limit of $500,000 and will give families another tool to use in estate planning along with other mechanisms such as a special needs trust.
You can make a difference! Call your member of Congress and ask him or her to co-sponsor the Achieving a Better Life Experience Act (ABLE) of 2009 bill. Some of the talking points are:
- This legislation allows for the establishment of tax-exempt financial security accounts for individuals with disabilities to pay for certain expenses necessary to help them live a productive, independent life in the community.
- The legislation is important because currently individuals with disabilities who receive public benefits cannot have more than $2000 in assets and retain eligibility.
- The legislation encourages persons with disabilities to save for costly purchases that they would otherwise be unable to purchase with their own funds.
View the legislation and current House of Representative co-sponsor list at http://thomas.loc.gov. Enter H.R.1205 in the Search Bill and Summary Status area. To see the list of Senate co-sponsors, click Related Bills S. 493.
If your Senator or Representative is interested in signing on as a cosponsor, they should contact:
- Bryan McDonough (202-224-6324) in Senator Robert Casey’s office.
- Dustin Krasny (202-225-2501) in Representative Ander Crenshaw’s office.
Please check the list of co-sponsors before calling your Senator and Representative. If they are already co-sponsoring the legislation, call them and thank them for doing so!
Change.org - Petition to End Waiting Lists
Earlier this year, mother and advocate Renee Beauregard in Aurora, Colorado posted an idea on Change.org to fully fund medicaid waivers as part of the economic stimulus package. The idea fell short of making the top 10 ideas for America. The idea on the Change.org site has now been updated to promote a petition to end waiting lists. Please help distribute this in order to help gain 500,000 signatures in the next six months.
Please go to:
http://www.change.org/ideas/view/fully_fund_medicaid_waivers_for_the_developmentally_disabled to sign the petition and use this link to promote it. For more information or to follow Ms. Beauregard, you can search for RBeauregard on Twitter.
Update on NIH Research Funding
Thanks to the phone calls, emails and faxes that many of you made or sent to your elected representatives, a total of 36 Members of Congress signed the attached Congressional Down Syndrome Caucus letter to the National Institutes of Health (NIH) director requesting significant additional funding for Down syndrome research.
Because Congress does not earmark funds for specific diseases and conditions in its annual appropriations for the NIH, this Caucus letter is a critically important step in our efforts to demonstrate strong political support for Down syndrome research. In fact, the letter has already produced a positive response. On April 29, the Institute of Child Health and Human Development (NICHD) at the NIH issued a Funding Opportunity Announcement soliciting research grant applications to study factors affecting cognitive function in Down syndrome. According to the announcement, "This represents the first step in a multi-year strategic plan to augment research by various NIH institutes on this important public health issue."
The House and Senate Appropriations Committees are currently conducting oversight over the scientific research priorities that NIH plans to fund with the $10.4 billion provided in the Economic Stimulus legislation passed by Congress in February 2009. The Committees are also developing the NIH budget for fiscal year 2010, so the agency is particularly receptive to recommendations from Congress at this time.
As you know, NIH funding for Down syndrome research has decreased significantly over the past five years, and such research continues to be disproportionately under-funded in relation to other conditions. At a minimum, NIH funding will need to triple just to accomplish the modest goals that the agency established in its 2008 Research Plan for Down Syndrome (see
www.nichd.nih.gov/publications/pubs/upload/NIH_Downsyndrome_plan.pdf). The NIH developed the research plan to advance understanding of Down syndrome and speed the development of new treatments for the condition. Unfortunately, the agency has chosen to fund other priorities at the expense of Down syndrome.
ACTION NEEDED
To ensure that Down syndrome research is a priority to the NIH, we need your continued help in building political support from Congress.
If your Representative is one of the 36 cosigners of the Congressional Down Syndrome Caucus letter, please send them a thank you note by fax or email and explain why their support is personally important to you.
If not, please call, fax or email the office of your U.S. Senator and Representative and ask them to send their own letter to the NIH director requesting additional funds for Down syndrome research. Feel free to share with them a copy of the Caucus letter as a template for their own letter- See link for Caucus Letter:
Kennedy-Brownback Prenatally and Postnatally Diagnosed Conditions Awareness Act
The National Down Syndrome Society (NDSS) and National Down Syndrome Congress (NDSC) commend the Maternal and Child Health Bureau (MCHB) of the U.S. Department of Health and Human Services (HHS) for providing funding to implement the Prenatally and Postnatally Diagnosed Conditions Awareness Act (also known as the Kennedy-Brownback bill in honor of the two Senators who originally championed it).The passage of this important legislation was an extremely high priority for NDSS and NDSC, the original sponsors of the bill in the Senate and the leadership of the Congressional Down Syndrome Caucus. After an extensive advocacy effort, including visits to Capitol Hill by individuals with Down syndrome and their families, the bill was signed into law by former President Bush on October 8, 2008. However, it did not come with any Congressional appropriations to enact the recommendations. Now, MCHB has dedicated $820,000 in funding for each of the next four years.
The funding will be awarded through a federal grant process. Eligible groups--which include hospitals, disability groups, governmental agencies, etc.--are encouraged to apply for the funding in a competitive application. One "applicant" will receive the funding. Although according to the terms of the grant, single disability organizations cannot be the "lead" grantee in the proposal, NDSS and NDSC are partnering with other disability organizations to submit one proposal as a combined "applicant." By the end of the year, an announcement will be made on which applicant wins the competition and receives the funding. A link to the full announcement from the Maternal and Child Health Bureau is available at: https://grants.hrsa.gov/webexternal/FundingOppDetails.asp?FundingCycleId=7A9325F9-7227-4BF3-9662-90B60C3150FA&ViewMode=EU&GoBack=&PrintMode=N&OnlineAvailabilityFlag=&pageNumber=1&version=2&NC=&Popup=
Per this link, the funding "seeks to increase patient referrals to providers of key support services for women who have received a positive test diagnosis for Down Syndrome, Spina Bifida, Dwarfism and other prenatally or postnatally diagnosed conditions; strengthen existing networks of support through outreach programs; improve available data by incorporating up-to-date, evidence-based information into existing state programs for birth defects and prenatally or postnatally diagnosed conditions and ensure that patients receive information about the accuracy of the diagnostic tests for the conditions. Provisions also include the establishment of or increased access to a resource hotline."