By Aaron Kaufman
When I was born with cerebral palsy, my parents knew that I would encounter obstacles that neither they nor my peers had to navigate. Aside from the frustration that inevitably results from navigating an inaccessible world, having a visible disability means I also feel a constant need to prove myself and added pressure to excel and disprove societal biases about people with disabilities. I felt this pressure at school, I feel it now at work, at the theater, and even on my weekly trips to the grocery store,where I am met with averted eyes and looks of pity.
However, living with a disability has also helped me channel this frustration into a fruitful career at the Jewish Federations of North America (JFNA), where I help lead the Jewish community’s efforts to advocate for and with people with disabilities – including our annual Jewish Disability AdvocacyDay, where Jews with disabilities and our allies converge on Capitol Hill.
This event, which brings together professional and lay volunteers from across the Federation system and beyond, is one crucial way of ensuring that we don’t just talk about disability acceptance and inclusion in our places of worship or inside the Jewish community. Instead, we actively lift our voices and fight for change. At this year’s Jewish Disability Advocacy Day on February 26th, advocates will urge Congress to pass two key bills that will help disabled Americans live independent lives, without fear of bankruptcy due to medical costs.
One of the major reasons why I’ve been successful as a lobbyist and disability self-advocate is that I have a measure of financial security thanks to my Achieving a Better Life Experience (ABLE) Account. ABLE Accounts allow people with disabilities and their families to establish tax-advantaged savings and investment plans. These accounts ease financial strain for people with disabilities by allowing them to withdraw their own tax-free savings to pay for costly disability-related expenses. Thanks to my ABLE Account, I have money set aside for disability-related expenses, such as mobility devices and various therapies.
Currently, to be eligible for an ABLE account, one must receive a disability diagnosis prior to age 26. While many Americans, like myself, are diagnosed with a disability early in life, millions of Americans with disabilities are prevented from accessing this critical financial tool because their diagnosis came later in life. Due to this age cutoff, adults who acquire their disability later in life, such as individuals with spinal cord injuries, traumatic brain injuries, Lou Gehrig’s disease, and multiple sclerosis, are barred from this essential program. The ABLE Age Adjustment Act (S. 817/H.R. 1874 in the last Congress) would raise the age cutoff to 46, ensuring that more than 6 million Americans can achieve financial stability and access to essential disability-related health services.
For the past three years, I have worked with disability rights lobbyists, advocates, and self-advocates to urge Congress to reauthorize the bi-partisan Money Follows the Person (MFP) program, which is in jeopardy. MFP is one of the longest-running and most successful demonstrations in Medicaid. Thanks to this program, more than 88,000 people with physical and intellectual disabilities, mental illness, and senior citizens in 47 states have transitioned from institutional settings back into home- and community-based services. As a result of MFP, thousands of participants who need long-term services and support can successfully transition from institutions back to their own homes and communities. Despite its success, MFP expired in September 2016, leaving states scrambling to use their own funds to continue these positive efforts to integrate seniors and people with disabilities into the community. The efforts of the disability rights and advocacy community have not gone unnoticed. Last month, the Medicaid Extenders Act of 2019 was signed into law. While a good first step, this legislation only extends MFP until March. We must continue to advocate for a long-term solution. This is why we are focusing our energy on advocating for the bipartisan, bicameral EMPOWER Care Act (S. 2227/H.R. 5306 in the last Congress).
At the heart of these two programs is a commitment to caring for all members of our community. To me, being Jewish is about the bonds of connection that help uplift all members of our community – and way beyond that. Jewish Disability Advocacy Day will demonstrate the power that this community can have when we think beyond awareness and acceptance alone, and work to make inclusion a reality for millions more people throughout the country.
Aaron Kaufman is Senior Legislative Associate, The Jewish Federations of North America.