Parents of children with autism, down syndrome and other disabilities are in Washington fighting for help. They want congress to pass the ABLE Act. It would let these families set up tax-free accounts. (Cox Washington Bureau)
Showing posts with label Buddy Walk on Washington. Show all posts
Showing posts with label Buddy Walk on Washington. Show all posts
Tuesday, March 19, 2013
Wednesday, March 13, 2013
Achieving a Better of Life Experience (ABLE) Act: 2013 Overview
from the NDSS:
The Achieving a Better Life Experience (ABLE) Act of 2013 (S. 313/H.R.647) was introduced in the 113th Congress by a bipartisan, bicameral set of Congressional Champions including Sens. Robert Casey, Jr., (D-PA) and Richard Burr (R-NC), and Reps. Ander Crenshaw (R-FL), Chris Van Hollen (D-MD), Cathy McMorris Rodgers (R-WA), and Pete Sessions (R-TX).
The ABLE Act would amend Section 529 of the Internal Revenue Service Code of 1986 to create tax-free savings accounts for individuals with disabilities. The bill aims to ease financial strains faced by individuals with disabilities by making tax-free savings accounts available to cover qualified expenses such as education, housing, and transportation. The bill would supplement, but not supplant, benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources.
An ABLE account could fund a variety of essential expenses for individuals, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation. The ABLE Act provides individuals with disabilities the same types of flexible savings tools that all other Americans have through college savings accounts, health savings accounts, and individual retirement accounts. The legislation also contains Medicaid fraud protection against abuse and a Medicaid pay-back provision when the beneficiary passes away. It will eliminate barriers to work and saving by preventing dollars saved through ABLE accounts from counting against an individual’s eligibility for any federal benefits program.
You can do your part to advocate for the ABLE Act and other key Down syndrome legislative priorities at the 2013 Buddy Walk® on Washington!
Senate ABLE Act Cosponsors
House ABLE Act Cosponsors
You can find out if your two senators and representative cosponsored the ABLE Act of 2011 by clicking the links below:
Senate ABLE Act Cosponsors
House ABLE Act Cosponsors
The Achieving a Better Life Experience (ABLE) Act of 2013 (S. 313/H.R.647) was introduced in the 113th Congress by a bipartisan, bicameral set of Congressional Champions including Sens. Robert Casey, Jr., (D-PA) and Richard Burr (R-NC), and Reps. Ander Crenshaw (R-FL), Chris Van Hollen (D-MD), Cathy McMorris Rodgers (R-WA), and Pete Sessions (R-TX).
The ABLE Act would amend Section 529 of the Internal Revenue Service Code of 1986 to create tax-free savings accounts for individuals with disabilities. The bill aims to ease financial strains faced by individuals with disabilities by making tax-free savings accounts available to cover qualified expenses such as education, housing, and transportation. The bill would supplement, but not supplant, benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources.
An ABLE account could fund a variety of essential expenses for individuals, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation. The ABLE Act provides individuals with disabilities the same types of flexible savings tools that all other Americans have through college savings accounts, health savings accounts, and individual retirement accounts. The legislation also contains Medicaid fraud protection against abuse and a Medicaid pay-back provision when the beneficiary passes away. It will eliminate barriers to work and saving by preventing dollars saved through ABLE accounts from counting against an individual’s eligibility for any federal benefits program.
You can do your part to advocate for the ABLE Act and other key Down syndrome legislative priorities at the 2013 Buddy Walk® on Washington!
ABLE Act Status
The ABLE Act was introduced in the US Senate and US House of Representatives on Feb. 13, 2013. You can find out if your two senators and representative are cosponsoring the ABLE Act of 2013 by clicking the links below:Senate ABLE Act Cosponsors
House ABLE Act Cosponsors
You can find out if your two senators and representative cosponsored the ABLE Act of 2011 by clicking the links below:
Senate ABLE Act Cosponsors
House ABLE Act Cosponsors
Take Action
NDSS offers you different ways of contacting your Representative and Senators.NDSS Resources
- 113th Congress ABLE Act FAQ
- 113th Congress ABLE Act One-pager
- 113th Congress Letter of Support
- ABLE Act Press Conference Photo Gallery (November 2011)
- The ABLE Act: Full Steam Ahead in the US Congress
External Resources
Friday, March 8, 2013
DSR Episode #18: Buddy Walk on Washington with Sara Weir
Advocacy Alert!! The Buddy Walk on Washington is next week! Advocates from across the country will be converging on our nation’s capital to advocate for legislation that will impact the lives of people with Down syndrome and their families.
In this episode of Down Syndrome Radio we get wonky and talk advocacy and politics with Sara Weir, Vice President, Advocacy & Affiliate Relations for the NDSS. Listen and learn about the Buddy Walk on Washington, the ABLE Act, Congressional Down Syndrome Caucus and Sara’s dog, Boss.
If you can’t make it in person, be sure to reach out to your congressional delegation and get their support for the ABLE Act! Also, please sign up for NDSS Advocacy Alerts to receive an email to let you know what to do to support important Down syndrome legislative activities.
Download Down Syndrome Radio, Episode #18.
Better yet…subscribe, rate us and leave a comment on iTunes!
In this episode of Down Syndrome Radio we get wonky and talk advocacy and politics with Sara Weir, Vice President, Advocacy & Affiliate Relations for the NDSS. Listen and learn about the Buddy Walk on Washington, the ABLE Act, Congressional Down Syndrome Caucus and Sara’s dog, Boss.
If you can’t make it in person, be sure to reach out to your congressional delegation and get their support for the ABLE Act! Also, please sign up for NDSS Advocacy Alerts to receive an email to let you know what to do to support important Down syndrome legislative activities.
Download Down Syndrome Radio, Episode #18.
Better yet…subscribe, rate us and leave a comment on iTunes!
Sara with self-advocate John Anton, bridesmaid Kasey, her dog Boss and Speaker of the House, John Boehner
Friday, February 22, 2013
Make your voice heard at the Buddy Walk® on Washington
Wednesday, February 13, 2013
Self Advocate Jon Anton's Message about the Buddy Walk on Washington
Dear Buddy Walk® on Washington Self-Advocates:
Greetings! My name is John Anton. I am a self-advocate from Haverhill, Massachusetts. I am currently working on Capitol Hill for Congresswoman Cathy McMorris Rodgers (R-Washington).
As fellow self-advocates, I am glad you will be participating in the 2013 Buddy Walk® on Washington on March 13-14th because our voice counts! Members of Congress and their staff need to hear from us on the legislative issues that really matter to people with Down syndrome.
The Buddy Walk® on Washington webpage will tell you everything you need to know about the upcoming event but I want to share with you a few exciting things specifically for self-advocates that will happen at the Buddy Walk® on Washington this year:
NDSS Self-Advocates Speak Out
All self-advocate participants are invited to join the NDSS Self-Advocate Advisory Board (SAAB) for an exclusive event just for self-advocates, NDSS Self-Advocates Speak Out. This event will take place from 2:00 – 3:00 pm on March 13th (before our advocacy training).The Board will share their expertise as seasoned self-advocates in this presentation for self-advocates by self-advocates. For more information and to RSVP, please contact NDSS Manager of Education & Programs Vanessa Quick at vquick@ndss.org.
Self-Advocate Bios
Each self-advocate should make a brief one-page bio (see template) to be left at all your congressional visits, so bring at least 5 copies with you. This is a great way to leave an impression - even on people you don’t meet in person! Bios should include a photo, contact information, a few sentences about yourself (where you work, go to school, interests), why you have come to the Buddy Walk® on Washington, how the ABLE Act will impact you and your family, and an ask to cosponsor.
Pre-Training for Buddy Walk® on Washington
NDSS facilitates several advocacy training webinars to help prepare you for your advocacy experience, what to expect on Capitol Hill, and discuss the 2013 key legislative priorities. You can find the slides from the first webinar, Buddy Walk® on Washington 101 – Everything You Need to Know. The next webinar, Buddy Walk® on Washington 201 – Ins & Outs of the NDSS 2013 Legislative Agenda/Asks, will be held on February 26 at 3:00 PM ET. You can register for the webinar here.
You can always contact NDSS VP of Advocacy and Affiliate Relations, Sara Weir at sweir@ndss.org with any questions.
See you in Washington!
Sincerely,
John Anton
NDSS DS-Ambassador
Monday, February 4, 2013
2013 Buddy Walk on Washington
2013 NDSS Buddy Walk® on Washington
The NDSS Buddy Walk® on Washington is an annual two-day advocacy conference that brings the Down syndrome community together to advocate for legislative priorities that impact the lives of people with Down syndrome and their families. Advocates meet with members of Congress and their staff on Capitol Hill to advance education, research and healthcare for people with Down syndrome.The 2013 Buddy Walk® on Washington will be held on March 13 & 14 in Washington, DC.
Registration
Registration for the 2013 Buddy Walk® on Washington is now open.Hotel & Location Information
The Buddy Walk® on Washington will be held at the L’Enfant Plaza Hotel (480 L’Enfant Plaza Hotel S.W. Washington, DC 20024). To reserve your room, call 800-635-5065 or reserve online using the group name “NDSS13” to receive the special group rate by Feb. 14, 2013. If you need multiple nights at the hotel, please email NDSS VP of Advocacy & Affiliate Relations Sara Weir at sweir@ndss.org.
Advocacy Training - March 13, 2013
Our NDSS advocacy training session is an opportunity to learn from NDSS about our key priorities for the 2013 Buddy Walk® on Washington. You will have the opportunity to hear presentations on the key “asks”, participate in role play sessions with your state delegations, and network with affiliates and advocates across the country. We strongly encourage all attendees participate in the advocacy training session from 3:00 -6:00 PM on March 13.
Buddy Walk® on Washington schedule
Wednesday, March 13, L’Enfant Plaza Hotel1:00 PM – 3:00 PM - Registration
2:00 PM - 3:00 PM Self-Advocates Speak Out - an exclusive event for all self-advocates hosted by NDSS Self-Advocate Advisory Board
3:00 PM – 6:00 PM - Buddy Walk® on Washington Advocacy Training
- NDSS Host Welcome Address
- Overview of 2012 Legislative Agenda & Asks
- Advocate Role Playing
- State Practice session
- Q&A session
Thursday, March 14, Capitol Hill
7:30 AM - 8:00 AM Depart Hotel (via Metro) for Capitol Hill (NDSS will provide metro cards)
8:30 AM - 10:00 AM - NDSS Capitol Members of Congress Breakfast Reception
9:00 AM - 5:00 PM Capitol Hill Visits (Meetings will be scheduled for each advocate)
Scheduling Your Congressional Visits
This year, we are working with Soapbox Consulting to schedule your Congressional meetings for you. If you have any questions, please contact NDSS VP of Advocacy & Affiliate Relations Sara Weir at sweir@ndss.org.
Buddy Walk® on Washington & Self-Advocates
Self-advocate participants of the Buddy Walk® on Washington are invited to join the NDSS Self-Advocate Advisory Board for a panel discussion and Q&A at 2:00 pm on March 13 (before our advocacy training). The Board will share their expertise as seasoned self-advocates in this presentation for self-advocates by self-advocates. Please note, this event is for self-advocates only. For more information, please contact NDSS Manager of Education & Programs Vanessa Quick at vquick@ndss.org.
Advocacy Training Webinars
NDSS will facilitate two advocacy training webinars to help prepare you for your advocacy experience, what to expect on Capitol Hill, and discuss the 2013 key legislative priorities. Register for each of our webinars by clicking on the links below:Buddy Walk® on Washington 101 – Everything You Need to Know
February 7 at 3:00 PM EThttps://www2.gotomeeting.com/register/854735786
Buddy Walk® on Washington 201 – Ins & Outs of the NDSS 2013 Legislative Agenda/Asks
February 26 at 3:00 PM EThttps://www2.gotomeeting.com/register/810315282
Getting Around Washington
For more information, please contact NDSS VP of Advocacy & Affiliate Relations Sara Weir at sweir@ndss.org.
Monday, March 5, 2012
The Buddy Walk on Washington's Impact
This is a family's recount of the Buddy Walk on Washington from the blog Particularly Perfect.
We walked on Washington. We conquered Capitol Hill. We spread our message to our Congressman and Senators in an attempt to improve the futures of all people with disabilities.
Representative Cathy McMorris-Rodgers has a son, Cole, that just happens to have Down syndrome. I truly believe that some people have been placed in positions of power to help others. She is one of those people. Her political strength will no doubt help many people with Down syndrome in years to come. I am so grateful for her.
We walked on Washington. We conquered Capitol Hill. We spread our message to our Congressman and Senators in an attempt to improve the futures of all people with disabilities.
Congressman Sessions spoke about being a fraternity brother of Pi Kappa Alpha...and I have always been a proud sorority sister of Alpha Xi Delta, but Congressman Pete Sessions, of Texas, reminded me just how amazing greek organizations can be. Congressman Sessions has two sons, Bill {president of his chapter of Pi Kappa Alpha} and Alex {who just happens to have Down syndrome}. Holding back tears, the congressman explained how proud he is of his fraternity. This weekend, Alex was initiated as an honorary brother. But his pride reaches beyond that. The congressman has received texts and emails, from men who have never met Alex, stating they couldn't wait to call Alex their brother. That is the true meaning of brotherhood. Ties that reach far beyond friendship. Inclusion. At the end of the day, that's all we really desire. To be included. All of us. Despite our differences.
Dr. Brian Skotko - I don't even know where to begin...I am in awe of this man. Dr. Skotko is an amazing doctor but even more amazing brother. His sister, Kristin, just happens to have Down syndrome. Dr. Skotko is a board certified geneticist at the Children's Hospital Boston. He has written books, conducted important studies and quite simply made a huge impact in the lives of people with Down syndrome...and their families. He couldn't be more amazing...
What was our message? Sign the ABLE Act. Today Kayla cannot own more than $2,000. She cannot be worth more than $2,000. Truth. Sad but true. Why? She receives medical benefits from the government. Most people with disabilities have medical benefits provided by the government but are not able to be worth more than $2,000 or they will lose those benefits. Kayla can't get money for birthday presents. We can't save for her college or her future. We cannot leave her our house or a car. Her grandparents cannot leave her anything in their wills. She can't be worth more than $2,000. Well...there is one way to save money for her future...a Special Needs Trust...but this trust has several issues...
1. It doesn't transfer from state to state should you move.
2. It is super complicated.
3. It costs several thousand dollars to set up...so...truth be told, we'd be using every dollar we would have to give to Kayla just to set up the trust.
And why not allow her the same right as everyone else? Why should we not be able to save for her future? She is a person, with a voice...and should have the same rights. This is why we walked. She is the reason we fight for equality. We fight for Kayla and her 350,000 friends living in the United States that also have Down syndrome. We fight for them. All of them.
If Kayla were of working age today...why work? Why attempt to be a contributing member of society if she would be penalized for it? Many people with disabilities are fully capable of working but don't because it doesn't make financial sense because they will lose their medical benefits. The system is broken and must be fixed.
So what is the ABLE Act? If passed, it will be a vehicle of savings that is similar to a 529 education account. It will allow people with disabilities to save for their future without losing their medical benefits. The one difference is it doesn't have to be used for education...because not all people with disabilities are on a post-secondary education track...and that's ok...but they should not be penalized for trying to be independent, contributing members of society. That's my soapbox. I'll step down for a moment...but if you feel inclined, contact your local congressmen and senators and ask them to sign the ABLE Act, for Kayla.
What was our message? Sign the ABLE Act. Today Kayla cannot own more than $2,000. She cannot be worth more than $2,000. Truth. Sad but true. Why? She receives medical benefits from the government. Most people with disabilities have medical benefits provided by the government but are not able to be worth more than $2,000 or they will lose those benefits. Kayla can't get money for birthday presents. We can't save for her college or her future. We cannot leave her our house or a car. Her grandparents cannot leave her anything in their wills. She can't be worth more than $2,000. Well...there is one way to save money for her future...a Special Needs Trust...but this trust has several issues...
1. It doesn't transfer from state to state should you move.
2. It is super complicated.
3. It costs several thousand dollars to set up...so...truth be told, we'd be using every dollar we would have to give to Kayla just to set up the trust.
And why not allow her the same right as everyone else? Why should we not be able to save for her future? She is a person, with a voice...and should have the same rights. This is why we walked. She is the reason we fight for equality. We fight for Kayla and her 350,000 friends living in the United States that also have Down syndrome. We fight for them. All of them.
If Kayla were of working age today...why work? Why attempt to be a contributing member of society if she would be penalized for it? Many people with disabilities are fully capable of working but don't because it doesn't make financial sense because they will lose their medical benefits. The system is broken and must be fixed.
So what is the ABLE Act? If passed, it will be a vehicle of savings that is similar to a 529 education account. It will allow people with disabilities to save for their future without losing their medical benefits. The one difference is it doesn't have to be used for education...because not all people with disabilities are on a post-secondary education track...and that's ok...but they should not be penalized for trying to be independent, contributing members of society. That's my soapbox. I'll step down for a moment...but if you feel inclined, contact your local congressmen and senators and ask them to sign the ABLE Act, for Kayla.
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