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

July 27, 2010 1 comment

This is a guest post by Steven Beck, Vice President of the Down Syndrome Society of Northern Virginia and father of a 10-year-old daughter with Down syndrome.

My name is Steve Beck and I am, most importantly, the father of two beautiful 10, and 13-year-old daughters and husband to Catherine.  My 10-year-old daughter 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 this week celebrating the 20th anniversary of the Americans 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 past four years I have been working with group of national organizations, including Autism Speaks, 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 eight, 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 24, and well over 40 national organizations supporting its passage.  Please, visit www.autismvotes.org/able to contact your members of Congress and ask them to pass this important bill into law this year.

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org

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