On May 28, 2014, Not Dead Yet, the Center for Disability Rights and 11 other New York based disability organizations submitted public comments on the New York State Medicaid Delivery System Reform Incentive Payment Program (DSRIP). The comment letter called upon New York officials to eliminate one of the proposed projects, which they allege would fund Medicaid providers to save money by steering people to choose death over living with disability.
New York requested public comments because it is offering grants to Medicaid “safety net” providers with a high proportion of Medicaid patients to reduce unnecessary hospitalizations. Among the 44 potential programs for grant applicants to consider are three palliative care projects.
One of these projects is entitled “Conversation Ready,” and promotes advance care planning as a means of reducing hospitalizations. For this to be effective, the comment letter states that people on Medicaid would apparently be encouraged to refuse life-sustaining treatment as part of their advance care plan.
A recent Pew Research study found that:
. . . [A]bout two-thirds of whites (65%) say they would want to be allowed to die if they had an incurable disease and were suffering a great deal of pain, compared with 26% who say they would ask their doctors to do everything possible to save their lives in such circumstances. By contrast, a majority of blacks (61%) and about half of Hispanics (55%) say they would tell their doctors to do everything possible to save their lives if they had an incurable disease and were suffering a great deal of pain. [Views on End-of-Life Medical Treatments, November 21, 2013, http://www.pewforum.org/2013/11/21/views-on-end-of-life-medical-treatments/]
The “Conversation Ready” project is focused on safety net providers and includes the following requirement:
Identify care coordinators to work with community based and faith based partners to facilitate End of Life planning in a socially/belief system compatible manner to increase patients (sic) acceptance of program. [Pg. 57, DSRIP Toolkit]
According to the comment letter, giving provider networks financial rewards for being successful in this effort allows them to reduce hospitalizations and healthcare costs by encouraging individuals on Medicaid to “choose” death over treatment. The methods by which the “Conversation Ready” Project proposes to influence people are set forth in The Conversation Project, a website listed on page 57 of the state toolkit for grant applicants.
The comment letter claims that the Conversation Project (www.theconversationproject.org) makes it clear that the fear of living with a disability is what drives the seemingly innocuous decision-making process designed to steer people away from receiving care.
“Understandably, people don’t want to lose their abilities due to an accident, illness, or age,” said Diane Coleman, President and CEO of Not Dead Yet. “Yet disability is a natural part of the human experience and people adapt.”
The letter, joined primarily by organizations run by people with disabilities themselves, as distinguished from family members and service professionals, envisions an alternative approach. “The role of healthcare professionals should be to provide accurate information and support to help people get past their fears and disability stereotypes,” said Coleman. “They should never leverage common societal prejudices against disability to persuade people to forego healthcare in order to save money.”
The Conversation Project website also holds out the prospect of life in a nursing facility as the only choice a disabled person might have if they become too disabled. This was a major concern for Bruce Darling, President and CEO of the Center for Disability Rights in Rochester, NY. “New York has agreed to implement the Medicaid Community First Choice Option to ensure that New Yorkers can enjoy their federal right to home and community based services,” according to Darling. “The state should never promote death through refusal of healthcare, rather than home and community based services, as the alternative to placement in a nursing facility.”
The comment letter supported the other two proposed palliative care projects and recommended that they be strengthened by adding information and services relating to independent living and the Community First Choice Option and by including representatives from disability and aging advocacy organizations on their advisory committee.
The following additional NY disability organizations that joined in these comments: New York Association on Independent Living, Center for Independence of the Disabled, New York, Westchester Disabled On the Move Inc., Southern Tier Independence Center, Independent Living Center of the Hudson Valley, Independent Living, Inc., Rockland Independent Living Center, AIM Independent Living Center, SKIP of New York, Inc., Harlem Independent Living Center, and Community Service Center of Greater Williamsburg.
Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.