A new law unanimously approved during Oregon’s combative 2019 legislation session will keep in place the state’s process for delegating medical decisions for hundreds of adults with developmental disabilities.
The legislation came in response to an investigation by The Oregonian that revealed deep flaws within the state’s system for appointing medical decision-makers, including the case of a man diagnosed with a tumor who didn’t immediately see a cancer specialist.
The legislation fixes one glaring problem for state bureaucrats: Until now, no law gave the state explicit authority to use its long-established system to guide medical decisions for some adults with developmental disabilities.
Gov. Kate Brown signed Senate Bill 1039 into law June 20. It takes effect Jan. 1.
Rep. Cedric Hayden, R-Roseburg, called the legislation he co-sponsored a “step in the right direction” but said state officials should consider more oversight of decision-making for adults unable to make medical decisions for themselves.
“I don’t think it went quite far enough,” Hayden told The Oregonian. “I think it needs to be further explored.”
The law ratifies a practice that’s been used for two decades, which will protect the state from the potential of lawsuits. But it does not mandate training for people appointed to make medical decisions for adults with developmental disabilities, nor does it require additional supervision by the state.
Officials pressed for the bill amid an investigation this spring by the newsroom examining how medical decision are made for vulnerable Oregonians like Derrick Dahl. The Medford man was diagnosed with a tumor but was not referred to a cancer specialist until his mother intervened months later.
The Oregonian reported in May that state officials can’t quantify how many adults with developmental disabilities lack a voice in their own health care. The newsroom identified at least 1,325 adults like Dahl who do not have a legal guardian, cannot make their own medical decisions and cannot appoint someone in their place.
In such instances, medical decisions are made by a health care representative, a role that is renamed health care advocate under the new law. A team of caregivers, service coordinators and family members appoint the decision-maker, and the team must approve significant medical procedures such as surgery.
Although Senate Bill 1039 sailed through the Capitol without opposition, some lawmakers questioned why it didn’t include more safeguards.
Rep. Teresa Alonso León, D-Woodburn, told lawmakers in May that she believes medical decision-makers need training on their responsibilities.
“Whoever ends up playing this role has to have some sort of level of training,” she said during a legislative hearing.
The law requires training for two members of a person’s support team but not specifically the decision-maker. Such a requirement could be included when officials adopt rules this fall.
State officials also did not take steps to ensure they have better data about adults who cannot make their own medical decisions.
Oregon’s Office of Developmental Disabilities Services requested $1.6 million in the 2019-21 budget for a case management software system to centralize records and data. Failure to fund the project would “continue to compromise the state’s ability to provide oversight,” agency officials warned.
Oregon’s governor didn’t recommend spending money to centralize the records. And lawmakers didn’t provide any in the just-approved budget, an agency spokeswoman said.
“The governor recognizes the value of having accurate, timely data around ODDS case management issues, and would consider funding it in future budget cycles,” Lisa Morawski, a spokeswoman for Brown, told The Oregonian.
Hayden, who works as a dentist, said lawmakers made short-term fixes on a complicated topic.
Hayden said he’d like to see the state eventually take on oversight responsibility of health care advocates, perhaps through Oregon’s state-run but underfunded public guardianship program.
Hayden said he frequently provides dental services to patients with developmental disabilities who do not have legal guardians. State oversight could help clear up what he considers a “gray area” of liability, even when a medical decision-maker approves treatment.
State officials also should do a better job centralizing data, Hayden said, so lawmakers can better understand how many adults with developmental disabilities can’t make their own decisions.
“The data is out there,” he said. “We just don’t collect it.”