Champion of Rachel’s Pink House

Tomorrow night Congresswoman Cathy McMorris Rodgers (R-WA) will give the Republican response to the President’s State of the Union Address. This is very exciting news for people with Down syndrome. I have no idea if she will mention Down syndrome but over the last seven year’s she has become one of the leading Congressional Champions for people with Down syndrome. She has put her actions to work for people with Down syndrome.  Congresswoman McMorris Rodgers has three children and her oldest child Cole is seven and has Down syndrome. Please know this is not a political post. It is a post about advocating for the right things especially when we are given a ginormous opportunity like Congressman McMorris Rodgers. Her position gives her an opportunity to help Rachel get her pink house that many of us just don’t have. Oh, we all have a voice. Most of us choose not to use ours for advocacy.  It is refreshing to see this powerful woman working together with folks from across the country to make  a difference for people with Down syndrome and other disabilities.

Congresswoman McMorris Rodgers, Rachel and Jawanda at 2012 NDSS Buddy on Washington
Congresswoman McMorris Rodgers, Rachel and Jawanda at 2012 NDSS Buddy on Washington

Last week, Cathy wrote this editorial about the ABLE Act that I would like to share.  While this is about the ABLE Act. Most of us have the opportunity to help people with disabilities be ABLE in some way. While we may not have a Congressional vote, we may be able to invite them to lunch, help them learn a new skill, drive them to a job or just hang out. I hope you will look for an opportunity to do that for someone in your world.

Achieving Goals: Why it is Time for Passage of the Achieving a Better Life Experience Act (ABLE)
By Cathy McMorris Rodgers

 “In the words of the civil rights leader we honor this month, “We must never allow ourselves to become satisfied with unattained goals.”  Decades later, Dr. Martin Luther King, Jr.’s words still ring true for all of us, including those who have disabilities.

What are these goals for people with disabilities?  They include education, employment, active participation in a community, and living as independently as possible.  They are the same goals we all share.

 

As the mom of a 7-year old son, Cole, who was born with Down syndrome, I know firsthand the challenges those with disabilities face.  But while their challenges are great, our resolve – to empower them with a future of independence – is far greater.

Despite the tremendous, bipartisan strides that our country has made for those with disabilities, there is evidence that people with disabilities have unattained goals. For example, if you are a working-age adult with a disability, you are more than twice as likely to be living in poverty when compared to your peers who have no apparent disabilities.  The median income for an individual with a disability is 85 percent of that of an individual without a disability. When looking at issues of independent living, 37 percent of people who are homeless have a disability.

We must build upon the ideals of the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA). The next step is to explore ways to provide for economic security – including finding jobs and balancing the support provided by the public sector with the opportunity provided by the private sector.

This is what I want for Cole and the millions of individuals like him who have a disability. And the bipartisan disability community – on that has welcomed our family with open arms – agrees with me. When asked, 80 percent of people with disabilities want a job.

The Achieving a Better Life Experience Act (ABLE) will provide a tool to do just that – provide for economic success while preserving access to government programs. It is must-pass legislation for this Congress.

The ABLE legislation is simple.  It is predicated upon the belief that people with disabilities should be treated fairly. Current law requires people with disabilities to meet an asset requirement in order to qualify for Medicaid and some social security benefits.  If an individual has more than $2000 in assets, he or she is no longer eligible for benefits.  The result is that people with disabilities do not have access to savings plans such as 529 plans to help them with educational and other expenses.  They are forced to live in poverty because current federal policies mandate that they do so in order to be eligible for support.

ABLE would change that.  In creating ABLE accounts, the legislative intent is to provide a vehicle whereby a person with a disability would be able to save for disability-related expenses.  The ABLE funds 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.

Those funds would be available for certain qualified expenses, but would not “count against” the person’s eligibility for services that they need.  These accounts, like 529 accounts, will be simple to open and available in every state.

 

For our son Cole, an ABLE account would allow him to save for a post-secondary education program.  Another person with a disability might be able to use ABLE funds to provide transportation to a job.  It enhances choice and flexibility for those with disabilities and their families.  ABLE is one step toward economic self-sufficiency.

ABLE has garnered the support of 323 Members of the House of Representatives and 61 Senators.  In the House, the support is as bipartisan as any bill has been in recent years with 165 Democrats supporting the legislation as well as 158 Republicans.  This legislation has the support of well over 100 diverse disability advocacy groups including Autism Speaks, The Arc, the National Down Syndrome Society, and US Against Alzheimer’s.

So now is the time to get ABLE passed through Congress and to the President’s desk for his signature.   It is a matter of fairness, it is a part of the solution to poverty, and it is about reaching those unattained goals that Dr. Martin Luther King mentioned so many years ago.

 

 

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