On September 14, the Chicago Tribune ran an op-ed by Access Living Health Policy Analyst Sebastian Nalls about the risk posed to people with disabilities by Illinois’ End-of-Life Options for Terminally Ill Patients Act. The physician-assisted suicide law went into effect on September 12. Read the text of Sebastian’s letter below:
People with disabilities at risk
Access Living remains steadfast in our opposition to physician-assisted suicide, known as the End-of-Life Options for Terminally Ill Patients Act, and deeply concerned about the risks this law poses to people with disabilities.
Illinois is implementing assisted suicide while the healthcare safety net for people with disabilities faces extraordinary threats. Federal Medicaid cuts threaten billions of dollars in healthcare funding for Illinois and could cause hundreds of thousands of Illinoisans to lose coverage. People with disabilities continue to struggle to obtain sufficient home and community-based services, direct support professionals and other supports necessary to live independently in our communities.
Can we truly call assisted suicide a choice when some people with disabilities cannot get the services and support they need to choose to live? Access Living believes Illinois has failed to answer that question.
Since Gov. JB Pritzker signed the legislation, disability rights advocates have continued working to reduce its potential for harm. We introduced additional safeguards legislation, including a mandatory mental health evaluation for every person seeking assisted suicide, stronger protections against coercion and undue influence, and greater oversight and reporting. The General Assembly and governor’s office chose not to move forward with these protections.
These safeguards are meant to serve as mechanisms to reduce harm to people with disabilities. People with disabilities know what happens when healthcare systems place a dollar value on our lives, when insurance companies deny treatment, when Medicaid does not authorize enough personal assistance hours, when people languish on waiting lists for community services, and when healthcare professionals underestimate the quality of life of people with significant disabilities.
Illinois is creating a system in which the state will facilitate access to medication to end a terminally ill person’s life while it cannot guarantee that every person with a disability will have access to the healthcare, services, mental health treatment, palliative care, housing and personal assistance necessary to live.
That is not meaningful choice. People with disabilities deserve dignity at the end of life; however, dignity requires more than the option to die. It requires meaningful access to the services, support, healthcare and community integration necessary to live.
At a moment in time when those very supports are under unprecedented threat, Illinois should be strengthening the systems that give people with disabilities genuine choices about how they live.
— Sebastian Nalls, policy analyst for healthcare, Access Living, Chicago