Last month, U.S. Sen. Bob Casey delivered a virtual lecture, “Disability Policy: Beyond the Pandemic”, about the effects of COVID-19 on the disabled community, as part of the Dick Thornburgh Forum for Law & Public Policy within the Institute of Politics at the University of Pittsburgh.
Readers may recall that Dick Thornburgh served as the Governor of Pennsylvania from 1979 to 1987, and then as the United States attorney general from 1988 to 1991. This is the first lecture sponsored by the Thornburgh family since the former governor died in December 2020.
Disability policy is an issue that is extremely close the Thornburgh family. The Governor’s son, Peter Thornburgh, was injured in a car accident as an infant that left him disabled. “That is a demonstration of something I think we often forget about public servants, which is the role that their own experience and their own empathy plays in shaping their agenda and providing a true north star for their policies,” said Peter’s brother, David Thornburgh, during his introductory remarks.
Senator Casey opened his talk by noting that “Every one of us in one way or another, will have an experience with disability at some point in our lives, whether it’s an aging parent, or whether it’s a child born with a disability, a soldier returning from combat. So many thousands have a colleague who might have a disability, a neighbor who becomes ill, or the experience each of us has personally. People at some point will have a disability of one kind or another.”
Casey also said despite everyone’s experiences with disabilities, disability policy is often ignored in politics. He said he is trying to change that, and the government hasn’t focused enough on disability policy. “Over the last couple decades — the Americans with Disabilities Act being one of the great exceptions — too often, disability policy in Washington, D.C. has been ignored. And we’re trying to change that, despite good work being done by a number of members of Congress in both parties in both houses.”
Casey remarked that people with developmental and intellectual disabilities, such as cerebral palsy or Down syndrome, are the second highest group most likely to die from COVID-19. [In the U.S., about 80% of deaths from the disease have been in people age 65 and older.] Casey said those with disabilities were more likely to become infected in “congregate” settings and this caused the need for home-based services to increase. And because of Medicaid rules, it is difficult to get home-based services to those who need it. Other services, such as nursing homes, are required by law to have no “waiting period” or “cap” on their services.
“This is not the case, unfortunately, for home-based services,” Casey said. “Home- and community-based services are provided by a waiver — essentially an exemption to the law. Most waivers have limits on two things: the number of people served, and even the categories of people who can be served.”
To combat this issue, Casey has proposed a bill to provide care to people with disabilities who are on waitlists for home-based services. [Casey and 39 colleagues introduced the Better Care Better Jobs Act (S. 2210) in June 2021]. Among its many provisions, the bill would provide $100 million for states to develop plans to expand access to Medicaid HCBS and strengthen a depleted home-based care workforce.] Casey said the bill will also increase wages for care workers, who make an average of $12 per hour across the country. He called this bill “essential.”
Casey added that people with disabilities need to be included when making new procedures, policies or processes for emergencies or disasters. He said people with disabilities should have leadership roles. “And by saying ‘included,’ I mean actually included. Not as tokens or not as committee participants,” Casey said. “We need to include people with disabilities throughout all of our systems. They need to be leaders, and to be given the opportunity to be leaders in state, local and federal agencies.
Casey said the COVID-19 pandemic revealed how flawed the current care system for people with disabilities is, and “we must do better.”