Caregiving for loved ones, lobbying Congress to help those with disabilities and joining the United Nations’ convention on rights for the disabled are some of the issues being discussed during Jewish Disability Awareness Month.
Sixty-five Jewish activists from 12 states and the District of Columbia lobbied Congress Feb. 6 during the fourth-annual Jewish Disability Advocacy Day, sponsored by the Jewish Federations of North America and the Religious Action Center of Reform Judaism. They urged their members of Congress to pass the Achieving a Better Life Experience (ABLE) Act and support the United States becoming a part of the United Nations’ international disability treaty.
The ABLE Act would allow all people with a disability and their families to save money for education, housing, transportation, employment support and health. Currently, individuals with disabilities can only have $2,000 or less in savings to be eligible for money from Medicaid or Supplemental Security Income.
“We are not just talking about poverty. We are talking about economic self-sufficiency,” said Allison Wohl, executive director of Collaboration to Promote Self-Determination. It’s important for those with disabilities “to learn, to earn, to love and to save.”
With savings, families can make decisions about the education and medical equipment they want, she told the Jewish activists, some of whom came from area synagogues and Jewish social service organizations.
The activists also lobbied members of Congress to vote for the Convention on the Rights of Persons with Disabilities, an international disability treaty adopted by the United Nations in 2008 and based on the Americans with Disabilities Act. U.S. adoption of the convention, advocates say, would bolster efforts to advance its protections worldwide.
Supporting the treaty would not cost the United States any money nor would it force the country to adopt any of its recommendations, explained David Morrissey, executive director of the U.S. International Council on Disabilities, as he addressed those attending Jewish Disability Advocacy Day.
Rachel Laser, the Religious Action Center’s deputy director, also addressed the activists during their visit to Capitol Hill. Children with disabilities were more likely to be bullied or restrained by their teachers, and adults were more likely to be unemployed, she said. “We are making great strides, but these are not enough.”
Rabbi Lynne Landsberg, senior advisor on disability issues for the RAC, who herself suffered a traumatic brain injury following a car accident, urged everyone to not just welcome those with disabilities into their synagogues, but to embrace them.
Purchase prayer books in Braille and welcome those with disabilities onto various boards and committees, she urged.
The previous day, the Center for American Progress held a forum on caregiving in
America in which Barbara Bedney, director of human services and public policy at the Jewish Federations of North America, and Jill Biden, wife of Vice President Biden, participated.
Biden talked of “the difficult, exhausting roles” caregivers play, calling them “the unsung hero of so many families. They really are angels walking amongst us.”
However, many of these caregivers have full-time jobs, no one to relieve them and aren’t properly trained on how to deliver medicine or work a piece of medical equipment, according to members of the forum.
Bedney pointed to “an amazing lack of communications” between a caregiver and medical professionals. Sometimes, they are merely handed a list of what their loved ones need as they are leaving the hospital. They may have to change wound dressings or give injections, and “they are not getting the training,” she said. They also must deal with their own emotions and the emotions of their loved ones.
There are services available to help, but they aren’t always being used, because family members don’t know what’s out there and where to turn, Bedney said, adding that it is important to “help them follow along the caregiving path, the caregiving career. That’s what we call it now.”
Over the course of a lifetime, taking care of someone with a chronic illness or disability can cost between $300,000 and $600,000 in expenses and lost wages.
“That’s an amazingly staggering figure,” Bedney said. “People are just not prepared for this.”
Another problem Bedney pointed out is that, because of their generation’s historical low birthrate, as baby boomers age, fewer people will be available to care for them.
According to the Center for American Progress, there are 41.6 million caregivers in the United States, almost half of whom provide complex chronic care.
See also: Elevating awareness, sparking discussion