Ask the Advocate: Achieving a Better Life Experience

The Achieving a Better Life Experience (ABLE) Act of 2013 was reintroduced in Congress on Feb. 4 by a bipartisan, bicameral set of Congressional sponsors. This legislation will increase the independence of members of the disability community by allowing them to set aside funds for their daily needs without penalty.

Further, it will have no financial consequence on taxpayers. In fact, the ABLE Act would actually reduce the burden on taxpayers. We must work efficiently to ensure this bill is not stalled any longer and passes during this Congress.

Currently, to qualify for Medicaid/Supplemental Security Income, federal law prohibits individuals with disabilities from having more than $2,000 in assets and earning more than $674 per month or they will lose their benefits.

This prevents them from securing independent lives and perpetuates their dependence on government assistance. For decades individuals with disabilities, their families and advocates have been challenged by the pessimistic opinion that individuals with disabilities create a burden on society.

As the mother of two children born with Down syndrome, I have struggled with this misconception. I have been plagued by the dilemma of how to assist them in achieving full independence despite realistic financial demands. Without equal opportunities, individuals with disabilities will not shed this label and achieve true independence.

My children encounter many barriers to independence. Financial support can mitigate their limits and increase their abilities. Why inhibit a person from having employment and community supports, housing, transportation and assistive technology that enable them to live a more productive and fuller life? We cannot continue the dichotomy of demeaning labels, such as “burdensome,” while deterring someone from contributing to their own welfare.

Everyone should have the right to plan and save for his or her future needs. The time to pass the ABLE Act is now.

It is easy to say, “Other people will do it so why should I”?’ or “My legislators don’t want/need to hear from me.” If everyone adopted that same belief through the years, we could have never made the strides we have made for individuals with disabilities. Please take a few minutes to write to your legislators and let them know how important the ABLE Act is to your loved one’s future. By entering your zip code or state at the following websites, you can look up the representative for your district/state.

To look up your Congressional representatives, go to http://www.house.gov/representatives/find/.

To look up your Senators, go to http://www.senate.gov/general/contact_information/senators_cfm.cfm.

Advocacy tip

It is important to remember that those we elect not only represent us, but work for us. We have an obligation to educate them on the needs of ALL the individuals they represent.

Submit your advocacy questions to Trisomy21@email.chop.edu.This column is not intended to take the place of a formal legal or medical consult.