Advocates promote disability voice in federal health care payment initiatives

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One size does not fit all

Disability advocates are working to ensure they have a seat at the table as the Obama Administration ratchets up its efforts to improve payment models for health care services.

At issue is the Obama Administration’s effort to change the health care system’s traditional focus on quantity over quality.

In traditional fee-for-service Medicaid, for example, health care providers are paid for each service they provide, regardless of the quality of the service provided. The model has long been criticized for incentivizing doctors to provide an excessive level of procedures, driving up the costs of health care in the process.

With the rise of health care maintenance organizations (HMOs), many private health care systems have sought to improve coordination between different providers, in order to reduce unnecessary treatments.

The Affordable Care Act includes a variety of grants and experimental programs to continue this trend, in what is known as the Better, Smarter, Healthier Initiative.

Consistent with this approach, Secretary of Health Sylvia Burwell announced in January 2015 a goal of tying 30 percent of Medicare payments to alternative pay models by 2016, and 50 percent by 2015.

Two months later, the Department of Health and Human Services launched the Health Care Payment and Learning Action Network, a network of patients, providers, patient advocates and other stakeholders that seek to promote alternative payment models in the private sector.

While most disability advocates agree with the overall goal, there is a concern that the increased focus on the “value” of services could potentially lead to a decreased emphasis on unique, often more costly, services for people with disabilities.

In a letter written April 30 to Secretary Burwell, joined by more than 70 individuals and patients rights organizations, the Partnership to Improve Patient Care urged the DHHS to ensure that disability rights groups are viewed as key stakeholders in the program’s development.

“At the heart of the Network’s activities should be a goal to align value-based payments and alternative payment-models with principles of patient-centeredness,” the letter states. “This means having a strong infrastructure for beneficiaries, including patients and people with disabilities, to be engaged in defining the measures of their success.”

A separate letter sent May 1 by Not Dead Yet, which also joined the PIPC letter, urged DHHS to respect the rights of people with disabilities. Most pointedly, it urged the Obama Administration to distance itself from proposals – such as those pushed by controversial bioethicist Peter Singer – that include cost-benefit analyses perceived as devaluing the lives of people with disabilities.

“PIPC rightly points out that a risk in alternative payment models based on ‘value’ is that ‘value’ may be defined in a “one size fits all” manner that does not recognize differences among patients, potentially undermining the ability of patients and their providers to tailor care for the outcomes that they prefer,” the letter states. “The urgency of avoiding this error cannot be overstated. If the bottom line is a system that determines value based on ‘majority rule,’ that system will fail to meet the needs of individuals and will violate the core principles of self-determination.”