[Editor’s Note: I know that this press release is not news to our regular readers, due to our blog on the same subject two days ago. But we like to put our press release text into the blog so that it is screen reader accessible, since the PRWeb pdf formatted versions are not accessible to everyone. BTW, I had to go round and round with the PRWeb editorial staff to add explanations and connect the dots, as well as make it clear that we are “only” alleging that the Conversation Project is using a “better dead than disabled” approach in advance care planning conversations. Not surprisingly, as with all minority communities, bias against our community is harder for others to discern or be concerned about. The PRWeb version is here.]
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 the letter alleges 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. Advance care planning is a process whereby individuals execute advance directives such as living wills to indicate medical treatments that they want or do not want under various circumstances. For this project to be effective in reducing hospitalizations, the comment letter alleges that people on Medicaid would apparently be encouraged to include in their advance care plan a refusal of life-sustaining treatment that might involve hospitalization.
A recent Pew Research study found that minority populations are more likely than whites to want all possible medical treatment available:
. . . [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]
The state “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]
In order to receive grant funds for reducing hospitalizations and healthcare costs, the comment letter alleges that providers would have to encourage individuals on Medicaid to “choose” death over treatment in their advance care plans. 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 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. The letter quotes several excerpts from the Starter Kit on the Conversation Project website as examples of how living with disability is discussed in a negative way that could lead people to conclude that disability is a fate worse than death and, thus, execute advance directives that reflect that assumption.
“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.