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National Down Syndrome Congress | 1370 Center Drive | Suite 102 | Atlanta | GA | 30338
NDSS National Policy Center Update
- The US Senate Health, Education, Labor and Pensions (HELP) Committee released an 850 page draft of the Workforce Investment Act reauthorization proposal. A Committee mark-up is scheduled for June 29, 2011. This significant proposal has been reviewed and comments were submitted by NDSS to Senator Tom Harkin, chair of the HELP Committee, and to other Members.
- NDSS submitted comments on proposed legislation as co-founder of the Collaboration to Promote Self-Determination (CPSD), a coalition of 15 organizations focused on pursuing legislation and policy that will improve the lives of persons with intellectual disabilities, including Down syndrome.
These recommendations include: a strong realignment of transition supports to ensure all youth with significant disabilities are able to successfully pursue post-secondary education and integrated employment opportunities; reforms to promote stronger collaboration among public agencies and easier coordination and flexible use of public resources to produce preferred outcomes of post-secondary education and integrated employment.
The draft reauthorization includes many provisions which will benefit persons with Down syndrome such as: the extension of supported employment services to 24 months; required cooperative agreements among vocational rehabilitation (VR) and other state agencies critical to the provision of transition, employment and long-term supports and services to citizens with significant disabilities; funding directives to encourage more state focus on expanding supported employment services to youth with significant disabilities.
However, the proposed language related to the presumption of eligibility for employment services must be strengthened so as to youth considered the most difficult to place in integrated employment from being rejected for services. Also, not allowing students older than age 24 to utilize transition services will put these older students at a distinct disadvantage, especially those attending post-secondary programs that serve students with intellectual disabilities over 24 years of age. Lastly, CPSD believes that section 511 of the proposed reauthorization draft creates an easy path for placing youth with significant disabilities into positions earning subminimum wages and should therefore be deleted.
- On June 22, 2011 the US House Committee on Education and the Workforce approved the Empowering Parents through Quality Charter Schools Act by a vote of 34 to five. The bill is intended to modernize the federal Charter School Program and provide greater opportunities for states to develop and expand successful charter schools while strengthening the measurement of the impact of the Program. Currently, there are 400,000 students on charter school wait lists.
Additionally, the bill calls for charter schools to “improve student services to increase opportunities for students with disabilities, English language learners and other traditionally underserved students….” NDSS is pleased to see the language regarding students with disabilities in the proposed legislation, but believes this language should be stronger. An ongoing criticism of the charter school movement has been that some charter schools will not accept students with disabilities.
- NDSS is one of the sponsors of the Individuals with Disabilities Education Act (IDEA) National Survey project, a survey of whether the rights of students with disabilities and their parents are protected. The deadline for the survey has been extended to July 12, 2011. One of the main reasons for the extension is to get more parents of students with intellectual disabilities to respond. It is especially important for parents to answer the questions about assessments, so it can be determined whether the type of assessment seems to be affecting placement and access to the curriculum. If you haven’t already completed the survey, NDSS urges you to do so.
- On June 9, 2011 members of the NDSS Policy Center team were invited to a meeting with leading advocates on special education issues to discuss the reauthorization (amendment) of the Elementary and Secondary Education Act (ESEA), also known as the No Child Left Behind Act, with US Secretary of Education Arne Duncan and White House Domestic Policy Advisor Melody Barnes. Also in attendance were the Assistant Secretaries of the Office of Special Education and Rehabilitative Services, the Office of Elementary and Secondary Education and the Office of Planning, Evaluation and Policy Development.
NDSS represented the interests of students with Down syndrome at this meeting and spoke about concerns related to access to the curriculum, least restrictive environment and the opportunity to work towards a high school diploma, especially for students who take an alternate state assessment. NDSS Policy Center staff also met with the Deputy Assistant Secretary of the Office of Elementary and Secondary Education and his staff in a follow-up meeting on June 20, 2011 to discuss details about our concerns and how they can be addressed in the ESEA reauthorization.
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Be an Advocate!
There are many ways that you can help make a difference in the lives of people with Down syndrome through advocacy. Whether you aren’t sure who your local elected representatives are or you are a seasoned advocate, there are ways for everyone to get involved.
Click here to learn more and to sign up to receive important action alerts from the NDSS National Policy Center.
Don’t Cut Medicaid
Call to Action
Urge your U.S. Representative and Senators to reject Medicaid cuts.
Call your U.S. Senators and Representative Toll Free today at 1-866-922-4970
Medicaid funds virtually ALL adult services including long term support services that enable people with disabilities to live and work independently in the community. Medicaid also funds services for children in many states. These services can include respite care, after-school services and other in-home support services.
Under any plan in which there are large reductions in federal spending on Medicaid the burden of paying for services would fall to the states that would be likely be forced not only to eliminate services but to deny new applicants.
NDSC believes that Medicaid, in its current form, desperately needs reform and we focus a lot of our efforts on changing the law so that it can better meet the needs of people with disabilities and reduce the amount of Medicaid spending. One of the ways in which this can happen is enabling families to control the financial resources, through a fiscal intermediary and give families significant decision making power in getting the services their child needs. However, drastic cuts to the program with no significant reform efforts will only hurt people with disabilities.
Congress is debating how to balance the budget — and they need to hear from you. Reducing the deficit is important, but the approach must be fair and balanced. We should not balance the budget on the backs of individuals with disabilities– those who can least afford to bear it.
The message that Senators and Representatives need to hear now is “DON’T CUT MEDICAID.” Cuts to this vital program will only shift costs to states and transfer the burden to people with disabilities and seniors who depend on the program for long-term services and supports.
What Should You Say?
- Please reject Medicaid cuts in any form.
- Please oppose any proposals that include or will lead to deep spending cuts or restructuring Medicaid.
New Federal Bill of Interest
Rosa’s Law –Let’s get rid of the “R” word
After the unacceptable comments by Rohm Emanuel and Rush Limbaugh in February of 2010 we all need to speak up. A great way to get your thoughts known is to let your legislators in Washington know you support Rosa’s Law. The purpose of Rosa’s Law is to replace the terms “mental retardation and mentally retarded” with “intellectual disability and individual with an intellectual disability”.
Rosa’s Law was introduced in the Senate by Senators Barbara Mikulski (D – MD) and Michael Enzi (R- WY) in November 2009 as S2781. There are 28 co-sponsors in the Senate (no co-sponsors presently from Illinois). On 1-27-2010 it was introduced into the House as HR 4544 by Rep Michael E. McMahon (NY). There are presently 2 co- sponsors in the House (both from NH). 30 National organizations support Rosa’s Law including NADS.
Our culture has taken a medical term used to describe people who have cognitive challenges and turned it into a way to demean and make fun of people who they consider behaving in a “stupid” manner. We all know people with cognitive disabilities are not stupid. Let’s not allow one person to use a term to make fun of people and someone else to use the same term to describe our loved ones. If you agree please join us in contacting you legislator and asking them to support S2781 (in the Senate) and HR 4544 in the House.
Prenatally and Postnatally Diagnosed Conditions Awareness Act
(previously known as the Brownback Kennedy Bill)
The request is for $25 million over 5 years. Funding will ensure that parents receiving a diagnoses of their unborn or newly born child will be provided with up- to- dated, scientific information regarding life expectancy, clinical course, intellectual and functional development and prenatal and post natal treatment options.
This bipartisan bill was unanimously signed into law on October 8, 2008. Currently we are requesting our legislators to sign on to the McMorris- Rodgers Approriations letter, circulated by Rep Kathy McMorris – Rodgers.
Achieving a Better Life Experience Act of 2009 (ABLE)
Senate Bill: S493
House Bill: HR1205
- To encourage and assist individuals and families in saving private funds for the purpose of supporting individuals with disabilities to maintain health, independence, and quality of life.
- To provide secure funding for disability-related expenses on behalf of designated beneficiaries with disabilities that will supplement, but not supplant, benefits provided through private insurance, the Medicaid program under title XIX of the Social Security Act, the supplemental security income program under title XVI of such Act, the beneficiary’s employment, and other sources
Down syndrome Caucus
The mission of the Congressional Down Syndrome Caucus is to educate members of Congress and their staff about Down syndrome. The Caucus will support legislative activities that would improve Down syndrome research, education and treatment and promote public policies that would enhance the quality of life for those with Down syndrome” per website of Rep Cathy McMorris – Rodgers (WA) mcmorris.house.gov
Please consider contacting your legislator in Washington and make sure he or she has signed Rep McMorris – Rodgers letter.
This piece of legislation is meant to correct the significant oversight of not including Down syndrome in The Children’s Health Act of 2000 (Public Law 106-310). The 21 Act will “ attempt to incorporate Down syndrome as an area of permissible research and surveillance at the National Institute of Health and the Centers for Disease Control and Prevention and will foster a better understanding of Down syndrome.”
Introduced to the House by Rep. Cathy McMorris (R) (WA-5) Rodgers on 9/25/09. House: HR 3656; Senate by Sen. Sam Brownback (R) (KS) on 10/7/09 Senate: S1762
Join journalist Patricia E. Bauer as she seeks to bring you the best information about what’s happening now and what it may mean for you and your loved ones. This website attempts to aggregate news and commentary about disability, and to document the efforts of people who are seeking new ways to address familiar challenges.