By Susan Sklaroff-Van Hook
Clinical Coordinator & Resource Specialist
On Feb. 2, 2017, the Rayburn House office building on Capitol Hill overflowed with close to 200 lay and professional leaders from the Jewish community who gathered to lobby on behalf of specific issues that directly affect people with disabilities. The 7th annual Jewish Disability Advocacy Day continued its tradition as a united and inclusive effort, made possible by participating organizations in the Jewish Disability Network, chaired by The Jewish Federations of North America and the Religious Action Center of Reform Judaism and other supporting organizations.
This brilliantly orchestrated effort, which I had the privilege of attending, included an educational symposium from leading analysts on key issues relating to disability and inclusion, a briefing on relevant advocacy issues to raise with Congress and training on how to be an effective advocate and lunch with key members of Congress who discussed their leadership on disability issues. Representatives from the current Congress in attendance included: Reps. Gus Bilirakis (R-FL), Brian Fitzpatrick (R-PA), David Joyce (R-OH), Jim Langevin (D-RI), Cathy McMorris Rodgers (R-WA), Jamie Raskin (D-MD) and Pete Sessions (R-TX) and Sen. Chris Van Hollen (D-MD).
This year, potential changes in Medicaid and proposed revisions to the Americans with Disabilities Act were addressed. A powerful advocacy effort was launched by both the professionals who provide services particular to the needs of those who live with disability and the lived experience of family members and self-advocates who understand the impact of these needs on a personal level. Participants spent the afternoon in visits and conversations with key policy makers from their home states.
This was not my first time visiting the Hill. For any of you that may be reading this who have never had this experience and feel somewhat overwhelmed or scared of this process, I want to remind you that this is our government and that our officials serve us. I remember feeling nervous the first time I walked into a congressional building but that feeling quickly dissipates in comparison to the ability and even the responsibility of speaking truth to power. The people running our government are also citizens and, as stated over and over during our morning sessions, they need to know our stories and how legislation directly affects our lives and the lives of those for whom we care.
The meetings I attended were with the offices of Pennsylvania Reps. Tim Murphy (R) and Keith Rothfus (R) and Sens. Pat Toomey (R) and Bob Casey (D). Armed with advice on how to most effectively promote our talking points (see below), our groups spread out throughout the building, advocating a clarion call of caution and care in the face of the current disruptive conversations around the rights of people with disabilities.
Medicaid is the joint federal/state program that pays for health care and long-term care services for 10 million Americans with disabilities, who account for 15 percent of the total Medicaid population. Medicaid funding also pays for services that allow people with disabilities to live and work in their communities. Under several prominent congressional budget proposals, Medicaid would no longer be an entitlement and would be restructured in the form of either capping funds to states or creating “block” grants. As JFNA Senior Director of Health Initiatives Jonathan Westin said, Jewish community agencies receive approximately $6 billion annually to provide services to the disability community and the proposed reconfiguring to block grants to the states would likely result in a 30-40 percent reduction in reimbursements, an amount which would far exceed compensation from private funding. This means that services would need to be cut.
Dr. Mathew Keller, chair of the JFNA Disability Committee and owner of a pediatric practice in Pittsburgh, pointed out that not only would his patients be directly affected by this cuts, he would have to cut staff (a likely scenario for many health care and social service providers), which would in-turn powerfully impact the livelihoods of many, possibly increasing the number of people who would then turn to government benefits for support.
PRESERVING THE ADA
The ADA was enacted in 1990 with bipartisan support and approval of President George H.W. Bush. This seminal legislation has protected the civil rights of people who have physical, intellectual and mental disabilities and ensures that all Americans have full access to, and can fully participate in, all aspects of society. The ADA requires the removal of barriers that deny individuals with disabilities equal opportunity and access to jobs, public accommodations, government services, public transportation and telecommunications. This law has been good for businesses and society. It must be remembered that the disability community is part of the work force and the consumer community in this society.
On Jan. 25, 2017, Rep. Ted Poe (R-TX) introduced H.R. 620, the ADA Education and Reform Act of 2017. This act seeks to improperly shift the burden of compliance to individuals with disabilities, rather than to those denying them access to public accommodations. For example, this bill proposes a 180-day waiting period before a complaint can be submitted to the Department of Justice. As highlighted by Dara Baldwin, senior public policy analyst with Nation Disability Rights Network, no other member of a constitutionally protected class has to wait to exercise their legal rights alleging discrimination.
For many reading this, the question may arise “how does this affect me?” You may not have a family member or friend with a disability, you may not self-identify as a person with a disability (though most of us will become a member of this community as we age). At a time when there seems to be so much need in the world, it may be difficult for us to locate ourselves in this issue. The day after JDAD, I visited the U.S. Holocaust Museum. There on the wall were words that speak to the intersectionality of our lives and which reminded me of the universality of the need to protect the rights of people with disabilities:
First they came for the Socialists, and I did not speak out—
Because I was not a Socialist.
Then they came for the Trade Unionists, and I did not speak out—
Because I was not a Trade Unionist.
Then they came for the Jews, and I did not speak out—
Because I was not a Jew.
Then they came for me—and there was no one left to speak for me.
– Martin Niemöller