The Oregon Health Authority is quietly making a major policy change that could give doctors and families more power to negotiate what treatments are covered for children on the Oregon Health Plan.

The state has been taking public comment on its latest five-year proposal for Medicaid and will submit a final draft for federal approval this month.

The Lund Report first broke the news of the reversal.

In an email earlier this month, two top state officials said that in response to public feedback, Oregon will not seek to renew a waiver in its Medicaid plan that has allowed it to deviate from a federal standard, known as Early and Periodic Screening, Diagnostic, and Treatment, or EPSDT.

The EPSDT standard requires states to cover all medically necessary treatment for children on Medicaid, regardless of what services states provide to adults.

Oregon has been the only state with federal approval to take a different approach. It limits children’s coverage to a prioritized list of services determined by the legislature and a commission of medical experts appointed by the governor.

The agency is now saying that after a phase-out period, some medical treatments that the state has historically categorized as not prioritized for coverage will be funded on a case-by-case basis.

The new policy will make it easier for children with disabilities and chronic illnesses to access the full range of medical care they need, including less common therapies such as inpatient programs for children with severe autism, advocates say.

“Low-income children who rely on Medicaid are going to be able to get the same medically necessary treatment as their more affluent classmates,” said Meghan Moyer, the public policy director at Disability Rights Oregon.

“It’s a real victory for acknowledging how valuable early treatment is in the lives of people with disabilities and chronic illness.”

Orthodontia for severely misaligned teeth and treatment for chronic ear infections are among the treatments the state doesn’t currently prioritize that will be available going forward to children who can demonstrate a medical need.

The prioritized list

Oregon’s coverage limits for children have been in place for almost three decades.

Since 1994, Oregon has used a ranked list of paired conditions and treatments to determine what services it funds for all patients on Medicaid, including children.

Prior to the passage of the Affordable Care Act, limiting treatments allowed the state to save money, expand the eligible population for Medicaid and extend health coverage to more people.

Many of the treatments that are not covered fall under the rubric of unusual problems that don’t seem important, until it’s your child in the doctor’s office.

For example, until last year, the Oregon Health Plan did not routinely pay for the removal of a crayon lodged in an ear or nose.

The list ranks treatments from most important to least important. A review committee calculates the scores for each condition, paired with a treatment. The scoring system prioritizes maternity, newborn and reproductive care, preventative care, and chronic disease management.

The level of Medicaid funding set by the legislature determines how many items on the list are funded for Medicaid recipients.

The current list includes 662 lines of medical conditions and their treatments. The Oregon Health Plan currently covers items 1 through 472.

Those covered lines include much of the medical care that most people need, from chickenpox vaccines to cavity treatments to bone marrow transplants for cancer patients.

And, according to OHA, patients who have needed treatments that fall below the priority line have been able to request prior approval through their care providers, or file an appeal.

But the list has drawn criticism, with advocates saying it’s biased or discriminatory, or slow to adapt to changes in medicine.

Treatment for gender dysphoria and outpatient behavioral therapy for autism were not covered until 2013.

And patients with rarer conditions say they have found themselves denied treatments that are either too low on the list to be covered, or left off of it entirely.

In recent months, disability rights advocates, rare disease patient groups, and parents have organized a lobbying campaign to convince OHA — and its federal partners — to end the unique children’s coverage limits in Oregon’s Medicaid plan.

They argued that the state’s use of the prioritized list for children violated the stringent EPSDT standard requiring full benefits for all children on Medicaid.

That standard, first adopted in a law Congress passed in 1967 and strengthened repeatedly over the years, is intended to give all children their best shot at a healthy adulthood.

“Having access to care for a child early can make all the difference in the world in terms of the difference between coping with a long-term disability or thriving,” said Paul Terdal, a parent of children with autism and one of the architects of the advocacy campaign. “We’re not saving any money by harming this kid.”

Advocates argued that adults, not children, are the greatest drivers of cost in the health system.

Organizations representing people with epilepsy, cancer, and disabilities all submitted public testimony urging the state to reconsider its standard for children.

“There are more than 7,000 different rare disorders, many of which are not well studied or understood,” wrote Alyss Patel, a policy manager with the National Association for Rare Disorders.

“There is no way to ensure the state’s list of prioritized services will be sufficient for rare disease patients.”

The advocacy push gained momentum after a story in the Lund Report revealed internal misgivings within OHA over the coverage limits for kids.

OHA has yet to publicly announce the policy change. Instead, the agency shared the news in an email to the advocates and members of the Oregon Health Policy Board.

“OHA has taken this feedback seriously,” wrote Jeremey Vandehey, who directs OHA’s Health Policy and Analytics Division, and Dana Hittle, State Medicaid Director. “In order to achieve OHA’s goal of ending health inequities by 2030, barriers to medically necessary care must be removed for children and adolescents, in accordance with EPSDT.”

Neither the Oregon Health Authority nor the advocates have an estimate of how much the policy change will cost the state’s Medicaid program, or how many children stand to benefit.

Medicaid provides coverage for about half of Oregon children with special health care needs, and one-third of all children in the state, according to the Kaiser Family Foundation.