NDSS National Policy Center

The "Super Committee" and Down Syndrome

2011-09-22T09:40:00.001-07:00

No doubt you have read about the bipartisan "Super Committee" – the joint select committee of congressmen and senators who are charged with developing a plan to reduce the federal deficit by $1.5 trillion by November 23rd and sending the plan to the House and Senate for a vote by December 23rd of this year. If the Super Committee cannot agree, or if the House and Senate do not pass the bill recommended by the Super Committee, then $1.2 trillion in cuts will commence and will be evenly allocated across defense programs and non-defense programs in the federal budget.

Because of the stressful and unnerving prospect of across the board cuts to disability programs, the Collaboration for Self-Determination (CPSD), a coalition co-founded by NDSS, the National Fragile X Foundation and the Autism Society of America, is determined to meet with key staff of the twelve members of the Super Committee established by Congress. We believe there is an opportunity to make a strong case for changes to the major programs that will align the policies and outcomes of these programs to the 21st century concerns and needs of families and persons with Down syndrome. Representatives of a number of the 14 organizations who make up CPSD attend the meetings and are advocating for policy changes to disability programs that will result in more people with intellectual disabilities becoming employed and living independently.

These meetings-- and others we have had with staff of other members in the House and Senate in the past few months-- are proving to be instructive. The reception to our message has been quietly positive but staffers are definitely concerned about the cost of community based programs. They are very often not aware of the progress that has been made through medicine, education and family nurturing in producing persons with Down syndrome who are competent adults ready and willing to work and become full participants in the life of their communities. Although Hill staffers are mostly young, smart people, functioning in an atmosphere of considerable unpredictability, we find them surprised by information about innovative practices and models that will help people with disabilities lead fuller lives. Supported employment and customized employment are not widely understood. Nor are the concepts of universal design for learning and post-secondary education.

The messaging task before CPSD members is daunting in its complexity: explaining how policy barriers to employment like the asset limitation and income limitations in Social Security and Medicaid fix people with disabilities in a state of perpetual poverty; and explaining how these citizens and their families, if given more control of the public resources available to them, could create a more productive and independent life while utilizing public funds more efficiently and effectively.

I intend to write about these meetings as they occur to keep you "in the loop" and to "loop you into" the message development process. Conveying who these young people and adults with Down syndrome are and their incredible competencies to policymakers is a responsibility of the collective Down syndrome community. We need your help to communicate better.

Some of you may have seen the outstanding article in the NY Times about a young man named Justin who happens to have autism. The article was written by Amy Harmon, a journalist who has also written excellent pieces about people with Down syndrome in the past. The NY Times article is especially compelling because Ms. Harmon manages to allow Justin through words and action to tell us about himself, his dreams and his journey. Justin is the message.

NDSS Congratulates Dr. Karen Summar

2011-07-07T13:36:00.000-07:00

The Joseph P. Kennedy, Jr. Foundation, has named Dr. Karen Summar, a member of the NDSS Clinical Advisory Board, as one of its 2011-2012 Public Policy Fellows.

Established in 1946 and headed by Eunice Kennedy Shriver for fifty years before her death in 2010, the Foundation created the Public Policy Fellowship program to address the need for skilled leadership in government and public policy.

Kennedy Fellows are chosen for their distinguished involvement in efforts to improve the lives of persons with intellectual or developmental disabilities at the regional, state or national level. Fellows become future leaders who, after their year in Washington, make significant contributions to policy and program development. The intensive one year Fellowship in Washington D.C. includes a full year of active participation in public policy, advocacy training and a week-long Bioethics course at Georgetown University.

Dr. Summar, a pediatrician and researcher with expertise in Down syndrome, is currently an Assistant Professor of Pediatrics, in the Division of Neurodevelopmental Disabilities at Children's National Medical Center. Dr. Summar was formerly the Director of the Jane and Richard Thomas Center for Down Syndrome at the Cincinnati Children’s Hospital Medical Center and was an Assistant Professor of Pediatrics in the Division of Developmental Medicine at Vanderbilt Children’s Hospital. She is also the parent of a young woman who has Down syndrome.

Announcing 2011 State of the Art Conference on Postsecondary Education and Students with Intellectual Disabilities

2011-03-28T08:28:00.000-07:00

The National Down Syndrome Society is very pleased to announce that NDSS and George Mason University (GMU) will once again sponsor the National State of the Art Conference on Postsecondary Education and Students with Intellectual Disabilities, which will be held on November 3rd and 4th at GMU’s conference center in Fairfax, Virginia.

The Administration on Developmental Disabilities (ADD), in the U.S. Department of Health and Human Services, confirmed today that ADD will cosponsor the conference. ADD funds technical assistance on postsecondary education through ThinkCollege! and will be an important partner in the conference. Last year a number of national organizations cosponsored the conference, with contributions starting at $2,500, and we anticipate similar support again this year. Financial support from cosponsorships helps defray the costs of the conference, and will lower the registration costs for parents and students/self-advocates. If your organization would like to consider cosponsoring the 2011 conference, please contact Stephanie Smith Lee at slee@ndss.org.

The conference of 300 participants will provide an opportunity for colleges and universities, researchers, program staff, parents self-advocates, and government officials to learn about the current state of research and practice in the field. Panels that include faculty and staff from postsecondary education initiatives, parents, self-advocates and other experts, will share effective practices during break-out sessions with an opportunity for group discussion.

For a report on last year’s conference please click here to see the December NDSS E-Newsletter. A common thread in comments about the 2010 conference was the importance of the “mix” of government officials, researchers, IHE faculty, project staff, parents and self-advocates. Evaluations from the conference stressed how important it was to have an opportunity to learn from one another and experts in the field.

For information on the conference, visit www.sscsid.org. Registration will open May 30, 2011.

Buddy Walk on Washington

2011-03-02T08:37:00.001-08:00

What a great few days on Capitol Hill for the Down syndrome community! Click here to get the scoop and see some great pics!

Yearbook

2011-01-24T12:12:00.000-08:00

When students with Down syndrome have the opportunity to be included in
all aspects of the school community something amazing happens; people
start to see them for their contributions to that community and not for
their disability. Steve Sabia, son of the Associate Director of the
Policy Center, recently was honored with a full page spread in his high
school year book as the "symbol of school pride" for the Class of 2011,
a class of 450 students. The article in the yearbook mentions that he
has been a manager of the football and baseball teams since his freshman
year. The article also points out that he received a Panther of the
Month award for leadership, citizenship and scholarship-an award given
by the teachers that is received by only 40 students from each class
during their four years at the school. There are also quotes about how
funny Steve is and how he kept the football players on their toes. All
of this is wonderful, but the best part of the article is what it
doesn't say. There is no mention of Down syndrome or disability. The
focus was solely on Steve, the high school senior-as it should be.

Congresswoman Cathy McMorris Rodgers Encourages You to Attend the Buddy Walk on Washington!

2011-01-06T08:26:00.001-08:00

"The Buddy Walk on Washington brings the local community and the nation's Capitol together to celebrate the accomplishments of individuals with Down syndrome and to educate elected representatives on those issues affecting the Down syndrome community." -Congresswoman Cathy McMorris Rodgers

For more information and to register, click here. Hurry! Registration closes on January 12!

Join Us!

2010-12-01T10:27:00.000-08:00

There are just 40 days left to register to attend the Buddy Walk® on Washington. Registration closes on January 12th for the 2011 Buddy Walk® on Washington, which will take place on February 7th and 8th in Washington D.C.

There is no better opportunity as a member of the Down syndrome community to:

Join forces with other Down syndrome advocates from around the country
Meet face to face with elected officials on Capitol Hill and talk to them about the need to advance education, research and healthcare for people with Down syndrome
Have your voice heard…while having a great time!

No experience in advocacy is necessary, NDSS provides all of the training and preparation you’ll need.

Click here to register and to learn more. Registration is only $25!

Also, be sure to connect with us on the new Buddy Walk on Washington Facebook page for more in-depth, exclusive information and to share your perspective!

See you there!

35 years of IDEA: A time to celebrate and express thanks

2010-11-18T06:41:00.000-08:00

Today on Capitol Hill, I will be joining Members of Congress, the Administration, and other advocates to celebrate the passage of the first version of the Individuals with Disabilities Education Act (IDEA), thirty-five years ago. I was a young staffer on Capitol Hill when PL 94-142, the Education for All Handicapped Children Act, passed in 1975 and I well remember the sense of hope and excitement that accompanied the passage of this legislation. The new law was the result of two landmark Supreme Court cases and an extensive advocacy effort by parents and others dedicated to improving the lives of individuals with disabilities. It was then, and continues to be, both a civil rights law based on the 14th amendment to the Constitution, and a grants program.

Although we continue to face challenges, it is important to remember how very far we have come in the past 35 years. Let us remember today those parents and advocates who fought so hard for the passage of IDEA and all those who have dedicated themselves to keeping IDEA strong. As Thanksgiving approaches, it would also be well to express thanks to the dedicated teachers, instructional asistants, related service providers, and administrators who work so hard day in and day out to educate our children with disabilities and include our children in a warm, welcoming environment. I know my family is grateful to all of the educators who have touched our lives over the years. Why not send a note or make a call to say “thanks” as we celebrate 35 years of IDEA this month? Let us also rededicate ourselves to ensuring that IDEA stays strong for the next 35 years! -Stephanie Smith Lee, Senior Policy Advisor

Advocate for People with Down Syndrome and their Families

2010-11-01T08:53:00.000-07:00

Join the National Down Syndrome Society for an Important Day of Advocacy in Washington D.C.

The Buddy Walk® on Washington: February 7th and 8th, 2011

 Do you want to send a strong message to members of Congress and the Senate about the strengths and needs of people with Down syndrome?

 Do you want to fight for improvements in education, research, healthcare and more for people with Down syndrome?

 Do you want to be an advocate for people with Down syndrome and their families and meet other Down syndrome advocates?

This conference is for you! The Buddy Walk on Washington isn’t an outdoor walk…it’s a special day on Capitol Hill for the Down syndrome community to come together. There will be interactive advocacy training, reception and private meetings with officials in Washington D.C. You don’t need to be a policy expert, just someone with passion! It is a great experience for self-advocates, families and affiliate leaders.

Go to http://www,ndss.org to register and learn more! Registration is only $25.

Do you have this dream?

2010-09-30T14:02:00.000-07:00

If you are a person who has Down syndrome or a family member, have you thought about college? If not, it is time to start thinking and dreaming! After all, actions start with goals and dreams! The 2010 Conference on Postsecondary Education and Individuals with Intellectual Disabilities to be held October 28 and 29 in Fairfax, Virginia, will provide an opportunity to learn about new postsecondary initiatives for students with intellectual disabilities. It is being sponsored by the National Down Syndrome Society and George Mason University’s Helen A. Kellar Institute for Human disAbilities and cosponsored by other national organizations and the Department of Education. To find out more about the conference and to register go to http://www.sscsid.org/.

When my daughter, Laura, was born 28 years ago with Down syndrome, my husband and I were inundated with information about what she would not be able to do. Due to her severe heart defect, she was not expected to live. We were cautioned that she would not be able to live on her own and was likely not to go beyond a mental age of 8 years old. Later, school staff insisted that she should be in separate classes, did not provide structured reaching instruction or textbooks, and told us to expect a sheltered workshop after high school. College is the last thing anyone would have predicted for Laura. Thankfully children born today experience much higher expectations.

Due to her own hard work to achieve her goals, the persistence of her parents, and the encouragement and support of others, Laura has exceeded all the limited expectations others set for her. At her inclusive high school she received good academic instruction and went to proms and football games. When her high school friends and brother started planning for college, Laura did too. At that time there were limited options nationally and Laura was one of the first few students to attend the Mason LIFE program for students with intellectual disabilities. She had a great experience, grew academically and in many other ways, and lived in the dormitories. She was supported in obtaining paid work she enjoys.

Laura leads a full life with friends, sport activities, and travel. She is an advocate for others, has testified before Congress and speaks at conferences. Laura heads off in the morning on the subway to go to her job at the World Bank. Her postsecondary education experience played a large role in Laura achieving her dreams and living the life she wants.

So what about you? Are you thinking about college? Join us at the national conference to meet and hear from top national experts, including students with Down syndrome and their families. Come and find out what is possible. See you there!-Stephanie Smith Lee

A National Down Syndrome Patient Registry – What will this look like? How can you “act” on the 21 Act?

2010-09-17T10:23:00.000-07:00

On September 8th, 2010, the National Down Syndrome Society (NDSS) convened a conference in Washington, DC to discuss the creation of a National Down Syndrome Patient Registry. Conference participants included: leadership from the NDSS and NDSS Policy Center, the world’s leading Down syndrome clinicians and scientists, representatives from the National Institutes of Health’s (NIH)/National Institute for Child Health and Human Development (NICHD) and the Centers for Disease Control and Prevention’s (CDC) National Center for Birth Defects and Developmental Disabilities (NCBDDD), and leadership from the other key national organizations, Down Syndrome Research and Treatment Foundation (DSRTF) and Sie Foundation/Global Down Syndrome Foundation. The conference included a keynote address by Dr. Yvonne Maddox, Deputy Director at NICHD. Dr. Maddox described NICHD’s support for our national registry initiative, and has a strong desire to continue to work with critical stakeholders to advance a National Down Syndrome Patient Registry platform.

The conference focused on answering the key question, “How will a national registry benefit people with Down syndrome and their families?” The conference included two key panel discussions, which included: 1) An Overview of other National Registry Platforms; and 2) What does a National Down Syndrome Registry look like? The goals of the conference were to discuss and define the scope and function of a national registry, apply best practices from other national registry efforts, and map the next steps to engaging the Down syndrome community in this important process. Conference participants also contributed to four breakout sessions: National Registry Design, Governance & Ethics, Resources, and Stakeholder Engagement.

The conference comes off the heels of the introduction of the Trisomy 21 Translational Research Parity Act of 2009 (S. 1762/H. 3656) or the "21 Act." Senators Brownback (R-KS), Brown (D-OH) and Representatives Cathy McMorris Rodgers (R-WA), Kennedy (D-RI), and Sessions (R-TX) introduced the 21 Act last year in the hopes of establishing an infrastructure within the Department of Health and Human Services (HHS) to facilitate results-oriented research, forge new partnerships between academic institutions and clinics to work together to conduct translational research, produce targeted-funding opportunities, and help to develop new interventions, treatments, and therapeutics for Down syndrome. This bill aims to expanding, intensifying and coordinating Down syndrome translational research across the NIH, the CDC and other Federal agencies. The legislation, when enacted, will:

· Establish 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;

· Create a Down Syndrome Coordinating Committee to coordinate activities across the NIH and with other Federal health programs and activities relating to Down syndrome; and

· Develop a National Down Syndrome Patient Registry and Biobank.

Has your Senator and/or Representative Cosponsored the 21 Act?

The 21 Act currently has 19 cosponsors in the House and 3 cosponsors in the Senate. If your Member has not cosponsored the 21 Act, please follow this Action Alert: http://capwiz.com/ndss/callalert/index.tt?alertid=14213031

Below is a list of current House and Senate cosponsors:

House

Rep McMorris Rodgers, Cathy [WA-5]

Rep Davis, Geoff [KY-4]

Rep Harper, Gregg [MS-3]

Rep King, Peter T. [NY-3]

Rep Lofgren, Zoe [CA-16]

Rep McCotter, Thaddeus G. [MI-11]

Rep Moran, James P. [VA-8]

Rep Nye, Glenn C. [VA-2]

Rep Scott, Robert C. "Bobby" [VA-3]

Rep Souder, Mark E. [IN-3]

Rep Wolf, Frank R. [VA-10]

Rep Ehlers, Vernon J. [MI-3]

Rep Kennedy, Patrick J. [RI-1]

Rep Kosmas, Suzanne M. [FL-24]

Rep Massa, Eric J. J. [NY-29]

Rep Michaud, Michael H. [ME-2]

Rep Norton, Eleanor Holmes [DC] -

Rep Rothman, Steven R. [NJ-9] -

Rep Sessions, Pete [TX-32]

Rep Tsongas, Niki [MA-5]

Senate

Sen Brownback, Sam [KS]

Sen Brown, Sherrod [OH]

Sen Collins, Susan M. [ME]

State of the Art Conference on Postsecondary Education and Individuals with Intellectual Disabilities

2010-08-25T07:51:00.000-07:00

The National Down Syndrome Society (NDSS) is pleased to announce that registration is now open for the 2010 National State of the Art Conference on Postsecondary Education and Individuals with Intellectual Disabilities sponsored by NDSS and the George Mason University. The conference will be held on October 28 and 29 at George Mason University’s new conference center in Fairfax, Virginia. The conference is being cosponsored by the Steve Riggio family, the Office of Postsecondary Education (OPE) and the National Institute on Disability and Rehabilitation Research (NIDRR), U.S. Department of Education, the American Association of Colleges for Teacher Education (AACTE), the University of Minnesota’s Institute on Community Integration, ThinkCollege, Association of University Centers on Disabilities (AUCD), and the American Association on Intellectual and Developmental Disabilities. The conference is dedicated to the memory of Melissa Riggio.

This conference will provide an opportunity for students, parents, researchers, colleges and universities and practitioners to meet with top experts in the field and hear about exciting postsecondary initiatives across the country. The conference registration is expected to fill up fast. If you are interested in attending we encourage you to register immediately.

If you are a person with Down syndrome or a family member of a person with Down syndrome and the cost of travel and registration prohibits your participation, contact Beth Finkelstein, NDSS VP of Community Relations, to inquire about possible support from NDSS.

For more information and registration, go to: http://www.ndss.org/images/stories/NDSSresources/pdfs/invitation%20-%20final.pdf or visit www.ndss.org.

2010 OSEP Leadership Mega Conference Demonstrates Great Collaboration: Will Collaboration Continue through IDEA Reauthorization?

2010-08-09T14:45:00.000-07:00

By Stephanie Smith Lee, Senior Policy Advisor, NDSS Policy Center.

Last week the Office of Special Education Programs in the U.S. Department of Education held it’s first ever “Mega Conference” combining what in the past have been separate conferences for leaders and staff in early childhood, parent centers, and state agencies. The conference, entitled “Collaboration to Achieve Success from Cradle to Career” was held July 30 through August 5, 2010.

See: http://leadershipmega-conf-reg.tadnet.org/ for the agenda and conference materials.

Secretary of Education Arne Duncan offered strong support for parent involvement in a keynote on August 3, stating, “Parents of students with disabilities are some of the most determined advocates. Parents are key partners in policymaking and practice, pushing for greater access and better outcomes for their own and others’ children. I want to applaud you for your dedication to children with disabilities—and their parents. I also want to say I wish it wasn’t necessary for parents to be such fierce advocates. I understand that parents are compelled to advocate because they see that their sons and daughters aren’t getting the free, appropriate public education that federal law guarantees them.”

See: http://blogs.edweek.org/edweek/speced/2010/08/duncan_praises_parents_at_spec.html for an EdWeek blog and link to the Secretary’s speech.

The very welcome focus on collaboration continued on August 3 when all conference participants met together, with an estimated 1,200 participants. A Cross Departmental Panel the morning of August 4 featured Assistant Secretaries and their representatives. Panel participants highlighted collaboration, universal design for learning, inclusion, civil rights, new provisions for students with intellectual disabilities in the Higher Education Opportunity Act, and coordinating early learning programs. OSERS Assistant Secretary Alexa Posny moderated the panel and in her remarks said, “We don’t want our people in sheltered workshops” – good news to those of us working to expand inclusive employment options at competitive wages! NDSS Associate Policy Center Director, Ricki Sabia, conducted two workshops on Universal Design for Learning with Skip Stahl of CAST and Karen Erickson, Director of the Center for Literacy and Disability Studies, UNC.

Behind the scenes, there was much discussion about the reauthorization of the Elementary and Secondary Education Act (ESEA – previously referred to as NCLB) and the Individuals with Disabilities Education Act (IDEA). There have been some rumblings that the ESEA and IDEA laws might be merged into a single law during the reauthorization process. A number of important and effective practices have emerged through new IDEA requirements and Part D funding, including Positive Behavioral Interventions and Supports (PBIS), Early Intervening Services, Response to Intervention (RTI) and Universal Design for Learning (UDL). While developed and funded through IDEA, these practices benefit ALL students and certainly should be embedded in, and funded through, the ESEA. Aligning these two laws is important and NDSS strongly supports the Positive Behavioral Interventions and Support and Early Intervening Services to Improve Student Academic Achievement Act that will be introduced soon by Senators Michael Bennet, Lamar Alexander and Al Franken, that would align these preventative approaches in the two laws. NDSS also spearheaded the creation of the National UDL Task Force and is working together with thirty-nine national organizatins to incorporate UDL into Federal policy and legislation including ESEA. See www.udl4allstudents.com for more information on the Task Force. The alignment of UDL, PBIS, RTI and Early Intervening Services in IDEA and ESEA is certainly important.

However, and this is a big however, IDEA is a civil rights law as well as a funding program. There is no room for eliminating any civil rights protections and it is difficult to imagine that any good would come out of merging these two laws. A much more likely scenario is that ESEA will be reauthorized first, followed by IDEA. Important questions need to be addressed in the next IDEA reauthorization, including:

• Why aren’t children getting the free, appropriate public education (FAPE) that federal law guarantees them, as noted by Secretary Duncan?
• What needs to be improved to ensure that students with intellectual disabilities are educated in the least restrictive environment, with highly qualified teachers, access to the general education curriculum and appropriate assessments?
• What must be done to ensure that ALL children with disabilities receive FAPE, no matter what their disability is or where they live?
• What is working and what is not?

Recent news articles in LRP and Education Week have given the impression that OSEP is starting an internal process to develop IDEA reauthorization proposals, particularly with respect to OSEP monitoring, in consultation with State Special Education Directors. Reportedly, the intent is to then hold listening sessions around the country for others to comment on the proposals. One never knows just how accurate news reports may be. What we do know is that history clearly demonstrates that the most effective reauthorizations of IDEA have occurred when all stakeholders, including representatives of students and families, have an opportunity to provide input and communicate with each other at the beginning of the process. Whether it is at a child’s IEP meeting or when policy is developed at the school district, state, or national level, the most effective decisions making occurs when we all work together.

The 20th Anniversary of the Americans with Disabilities Act: A Time to Celebrate and to Review our Commitment

2010-07-23T12:16:00.000-07:00

My name is Steve Beck and I am most importantly the father of two beautiful 10, and 13 year old daughters Natalie and Mariae Rose and husband to Catherine. My 10 year old, Natalie has Down syndrome. One result of my younger daughter having Down syndrome is that I have become increasing involved in volunteer work at both the local and national levels. Currently, I am Vice President of the Down Syndrome Association of Northern Virginia and a Board Member of the National Down Syndrome Society.

As we spend time next week celebrating the 20th Anniversary of the American’s with Disabilities Act we need to also re-commit ourselves to moving forward. By prohibiting discrimination on the basis of disability in employment, State and local government, public accommodations, commercial facilities, transportation, and telecommunications the ADA has provided people with disabilities access to all parts of our community both socially and economically. Guaranteeing access is one step, but providing the tools and supports needed to fully engage that opportunity is a different issue. One of the primary tools needed for all Americans and their families is the opportunity to plan, save, and invest money that can be used to pay for critical needs such as education, healthcare, and retirement.

Over the last 4 years I have been working with group of National Organizations to pass the Achieving a Better Life Experience or ABLE Act of 2009. While government systems such as Medicaid, SSI, and SSDI provide a wide variety of critical supports for our community they simply cannot cover the full array of needs. In addition, many of the rules that govern them drastically limit individuals and their family’s ability to plan, save and accumulate assets to help fill these gaps. As a result, people are forced into poverty just in order to maintain access to these government benefits.

The ABLE Act would establish a savings instrument similar to ones that all other Americans have access to through 529 College Accounts, Health Savings Accounts, Individual Retirement Accounts, and 401Ks. Like these accounts ABLE Accounts could be set-up and managed with little or no cost. The money can be controlled by the individual, their parents, a guardian, or third party based on decisions made by the individual and their family. There is a very broad array of qualified expenses the money can be used for including healthcare, transportation, education, housing, community based support services, employment training and support and other life necessities. The money in the accounts grows tax free and can be distributed tax free as long as it is spent for a qualified expense. Most importantly, the assets held in the accounts cannot be used to disqualify individuals from critical means tested programs such as Medicaid, SSI and SSDI.

Now is the time to provide individuals with disabilities the same types of financial tools that all other Americans use to save for their future needs and to pay for critical parts of everyday community living. The ADA was passed 10 years before my daughter was born and I was still in college. I started working on the ABLE Act when she was 8, and she will be 11 in November. We cannot afford to wait much longer to start saving for her future and neither can millions of other Americans. I want and demand that she have the same opportunities to attend college, get a job of her choosing, and live independently just like her older sister.

The ABLE Act (H.R. 1205) has 190 co-sponsors in the House and (S. 493) has 24 Senate co-sponsors as of July 24th 2010 and well over 40 National Organizations supporting its passage. Please, contact your members of Congress and ask them to pass this important bill into law this year.

Almost the 4th of July Holiday...

2010-07-01T13:47:00.000-07:00

There is a lot of tension in DC among disability advocates as we approach the Independence Day holiday. The House of Representatives will adjourn for recess on July 30th--a full week before the Senate. This means we will have between July 12th and July 30th and then from shortly after Labor Day until the beginning of October when Congress leaves for recess again to pass the ABLE Act--this is precious little time considering what needs to be accomplished before the final recess. NDSS and the advocacy coalition that is attempting to get the bill passed are struggling to work with key staff of the House leadership to find a "pay-for". Several advocates, including Steve Beck, head of the NDSS Affiliate Advisory Board and NDSS Board Member, met with Speaker Pelosi's staff this week and we are scrambling to set up meetings with other key Members of the House leadership for the specific purpose of getting help in identifying funds in the budget that could be used to pay for the ABLE Act. The bill does not have an extraordinarily large budget score but the Congressional Budget Office did calculate that the bill would cost 1.6 billion over ten years. The Budget Office assumes that parents have savings accounts for their children and adults with disabilities now that are taxed and that funds in these accounts will be transfered to ABLE accounts when the bill is enacted into law and these accounts will not be taxable. Therefore, the Budget Office estimates the budget score for ABLE based on an assumptin of revenue loss to the Treasury.

This is frustrating for advocates because we know full well that thousands of parents and families do not have savings for their children and adults with disabilities, that having a child with an intellectual disability has a negative impact on the economic life of the family. We also know that federal policy discourages people from saving because there is no tax advantaged account available to our families and special needs trusts are often expensive to establish and maintain. In addition, special needs trusts are taxed at the highest income rate.

One very positive development I would like to underscore is that the cooperation among the national disability groups working to pass the ABLE Act has been remarkable. NDSS has developed very cordial and professional working relatinships with advocates from the autism community as well as the Fragile X community and other groups. Our mutual effort reminds me of the era gone by when advocates came together to pass the Education of All Hanciapped Childrens' Act (now IDEA) and the Americans with Disabilities Act (ADA). Time may not be in our favor; but the real solidarity that has developed amonst us in the disability community is invaluable and will have long term implications for bringing about reform inow and in the future.

Ander Crenshaw's Amazing Op Ed in the Washington Times

2010-06-29T07:21:00.000-07:00

CRENSHAW: ABLE Act is a step worth taking
Congress should lift roadblocks to financial success

By Rep. Ander Crenshaw

6:21 p.m., Friday, June 25, 2010

Equality. Americans have strived to open the door to its strength across generations of our nation's history. No population may understand the dedication and footwork needed to realize a level playing field for its players more than the disabled.

Great strides have been made to ensure that fewer of the disabled fall through society's cracks, but there is ample ground to cover before they have the same opportunities as other Americans. A good place to continue that fight is in the area of financial planning.

Today, the federal government encourages Americans to save for future needs through a variety of tax-advantaged savings accounts: individual retirement accounts, education savings accounts (529s), medical savings accounts and employer savings accounts (401k's). With the right tools in place, life's horizon can be brighter. Without them, dreams can pass by in the blink of an eye.

That's why I am so encouraged by the growing number of supporters behind my Achieving a Better Life Experience (ABLE) Act to create tax-deferred savings accounts for the disabled. To date, 184 House members and 22 senators are co-sponsors of this legislation. Special Olympics, the National Down syndrome Society, Autism Speaks and National Fragile X Foundation are among a long list of organizations also supporting the bill. All understand the need to crack open a wider door to equality for the disabled.

The average cost of raising a child with a significant medical disability is more than $1 million over the course of the child's lifetime. Continuing education, transportation, housing and medical care make up some of the predictable costs on that staggering bill.

ABLE accounts would relieve some of that burden by allowing parents with disabled children or family members of disabled individuals to invest through a tax-deferred savings account that could be drawn from for these future expenses. No longer would parents have to stand aside and watch as others use IRS-sanctioned tools like 529 education savings accounts to lay the groundwork for a brighter future. They would be able to do so for their children as well.

Creating an ABLE account would be as simple as opening an account at the local bank. Anyone currently receiving Supplemental Security Income (SSI) benefits would be eligible, and qualified expenses would include education and transportation expenses, medical and dental care, and employment and training support.

Anyone would be allowed to contribute to an ABLE account, and rollovers would be allowed without penalty; however, contributions to these accounts would be capped at $500,000. Under the proposal, the principal in the account would accrue interest-tax-free during the life of the beneficiary. When distributions were made to the beneficiary for qualified expenses, the distributions would be excluded from the gross income of the beneficiary.

In real life terms, that means young Sydney Leach, who was born with Down syndrome in Jacksonville, Fla., and is finishing first grade, could plan for her future. A bright student who can read, write and perform simple arithmetic, she hopes to gain a postsecondary education. Eventually, Sydney will work and earn a salary just as millions of other Americans do. Under current law, however, she cannot keep more than $2,000 in assets (whether earned or through gifts) or she will lose her benefits, such as Medicaid and Social Security Disability Insurance. With an ABLE account, that roadblock would be lifted, enabling her to save and use her earnings to cover qualified expenses.

The cost to reform the U.S. Tax Code to offer ABLE accounts would be minimal, but the positive impact for Sydney Leach, her family and others who are struggling to cope with an uncertain future would be sizable.

They and all the disabled deserve that opportunity. A change in the tax code so they can "achieve a better life experience" is a step forward toward equality with every other American - a step worth taking.

Rep. Ander Crenshaw is a Republican member of the U.S. House of Representatives from Florida.

© Copyright 2010 The Washington Times, LLC.

ESEA

2010-06-28T06:59:00.000-07:00

Policy Center staff has been consumed by the imminent introduction of an Elementary and Secondary Education Act (ESEA) reauthorization proposal because the US House of Representatives has indicated its intention to introduce an ESEA reauthorization proposal before the August recess. Reauthorization is when Congress amends and extends a law. Thus we have been busy developing recommendations and language for the draft bill. About four weeks ago, we learned about groundbreaking, game-changing research which involved 12,000 students with the most significant disabilities in a number of states and preliminary findings regarding how these students are faring under the ESEA (formerly NCLB). The findings are dismal and are precipitating a complete review of our NDSS recommendations regarding ESEA and specifically, the 1% rule. Nor is NDSS the only disability organization in this situation. Many advocacy organizations are reacting to the research findings. You will hear more from us on this topic in the coming weeks.

In brief, the findings are that many, many students with the most significant disabilities are not getting access to the general curriculum as is required under IDEA. Many of these student readers are “topping out” on the alternate achievement test—getting perfect or near perfect scores-- which suggests that they are improperly included in the 1% assessment. They are also being mis-assessed as to their reading grade levels and further, many students with the most significant communication deficits are also being mis-assessed and not given assistive communication devices. The good news is that the research shows that students with the most significant cognitive disabilities can learn academic content linked to grade level standards if they are provided with rigorous, challenging curriculum with good instruction and supports. Teachers clearly need additional training in how to teach the curriculum and understand the capabilities of their students.

Recognizing the gravity and magnitude of the research, on June 16th, Congressman Cathy McMorris Rodgers sponsored a roundtable on ESEA issues that relate to the ESEA 1% rule established by the US Department of Education for students with the most significant cognitive disabilities. NDSS helped to identify key experts and participants for the meeting which included key Hill staff from relevant committees in both the House and the Senate. The distinguished researchers represented the federally funded National Center on Educational Outcomes, the National Alternate Assessment Center (NAAC), the National Center for the Improvement of Educational Assessment, the University of New Hampshire and the University of North Carolina, Charlotte.

The intense roundtable discussion was followed by a panel briefing which I moderated on July 17th, the next day. Again, this briefing was organized by DS champion, Congresswoman Cathy McMorris Rodgers for the Members of the DS Congressional Caucus. Policy Center Associate Director Ricki Sabia presented broad concerns about the ESEA and particularly, the 1% category which includes approximately 10% of all students in special education. NDSS has long believed that the large size of this category is not supported by data and that specific ESEA regulations and waivers granted by the USDOE are undermining accountability for students with disabilities.

Paste this link into your browser

http://www.ndss.org/images/stories/NDSSresources/pdfs/aa-aas%20roundtable%20research%20bullets-ndss%20summary%203%202.pdf

or go to www.ndss.org and click on policy to learn more about the research presented during the Roundtable.

Welcome!

2010-05-28T07:08:00.000-07:00

All of us at NDSS are thrilled to bring you the NDSS National Policy Center blog.

While you can read about specific initiatives and pieces of legislation on our website and stay tuned via our action alerts, the blog is a great opportunity to share a bit of the “behind the scenes” of our work. It is a way to let you know when we have a great meeting with a White House official, get inspired by a self-advocate or react to something we see in the media that relates to a policy center activity.

The NDSS National Policy Center is lucky to benefit from the expertise of countless affiliate leaders, self-advocates, family members, board members, elected officials and professionals. We aim to share these connections via the blog as well, by inviting special “guest bloggers” on relevant topics.

We are especially excited about this blog because so often, adding a cosponsor to a bill or participating in a briefing is just the headline of an interesting and compelling story.

There was one example of this, just weeks ago, on May 12 when I testified before the US House of Representatives Subcommittee on Labor, Health and Human Services, Education and Related Agencies. The purpose of the testimony was to advocate for $5 million dollars in funds to go to the Center on Birth Defects at the Center for disease Control and Prevention (CDC) to implement the new prenatal legislation which passed in 2008. Click here to learn more about The Prenatally and Postnatally Diagnosed Conditions Awareness Act.

The hearing took place in a small, darkly paneled room with Chairman Obey on a dais above those giving testimony and many Subcommittee staff behind him. More than a dozen witnesses testified briefly about a range of issues from research to unlock the causes of cancer, Rhett syndrome and funding for specific disability programs like the Center on Birth Defects and Developmental Disabilities.

When I finished my testimony, Chairman Obey remarked that he especially understood the issues relating to the Act because he had a nephew with Down syndrome!

It is these moments, ones that would never make it into an action alert, but mean so much to our work and our cause, that we aim to continue to bring you on this blog. Stay tuned!

Regards, Madeleine Will, Director NDSS National Policy Center, Vice President of Public Policy