State Policy Encourages Fuller Lives for Disabled, but Denies Them Equipment

Disabilities activist Joseph Lowe has appealed to the Legislature to require the Oregon Health Authority to provide the equipment people need to move around in their communities -- not just their homes -- so that others won’t have to fight for their right to participate as he did. Even as CCOs show a 9 percent profit margin, people with disabilities are being denied the wheelchairs and scooters they need to leave the house.

Joseph Lowe has been in a wheelchair since he was five years old, but he never had any persistent back pain until recently, when the state refused to pay for the durable medical equipment that his doctor prescribed to meet his needs.

He appealed the Oregon Health Authority’s decision, but while he waited, the loaner chair he was given vibrated and put pressure on his back, causing permanent damage. He said the pain gives him insomnia, and he may need extensive testing to diagnose the degree of his back injury followed by physical therapy.

The Sandy resident fought the Oregon Health Authority for 18 months before he finally won himself the high-end wheelchair that his doctor ordered. He said the state’s stinginess came despite his own frugal ways: the Oregon Health Plan pays for new equipment every five years, but he took care of his old machine and it lasted 13 years.

The dispute came down to a federal and state policy that only gives people with disabilities the equipment that meets their needs while in their home, not when they leave the house.

John Mullin at the Oregon Law Center said it appeared the left hand of the federal government didn’t seem to know what the right hand was doing. Even as the Centers for Medicare & Medicaid Services has encouraged the Oregon Department of Human Services to focus its efforts on helping people live in their communities, the same federal agency has restricted states from being able to give disabled people the equipment they need to actually participate in their own communities.

But Lowe thinks this good-cop/bad-cop tension between government agencies isn’t limited to the federal government, and is entrenched in state government as well, where the Division of Aging and People with Disabilities at DHS is proactive in hooking people up with services that allow them to live in their communities, while the Oregon Health Authority, which buys the durable medical equipment through its highly profitable coordinated care organizations, doesn’t follow a policy that would get this population the equipment they need to live outside the home.

“APD is trying to help people with their their needs, and OHA in my opinion is all about trying to protect that dollar,” Lowe told The Lund Report.

Big Picture Focus for Oregon Health Plan?

Oregon’s Medicaid system is operated with extensive waivers that created the Oregon Health Plan, with its evidence-based prioritized list of approved equipment and procedures, as well as the transformation waiver that created the coordinated care organizations on the widely touted promise by former Governor Kitzhaber to buy an air conditioner if that’s what it takes to meet a person’s needs.

But the Oregon Health Authority has not gone this route when it comes to durable medical equipment, and couples its policy with the Medicare and Medicaid rules for in-home use.

“Although CMS has proposed changes to these Medicaid regulations which may require that home health services cannot be restricted to services furnished in the home itself, these proposed changes have not yet been finalized,” wrote OHA spokeswoman Stephanie Tripp in a response to an information request from The Lund Report.

Lyla Swafford, a woman with cerebral palsy, testified that she had been stuck in her home because the state would not replace a motorized scooter she needs to go outside. She said the state argued she could get around with a walker and cane inside her house.

Lowe characterized the current policy as pennywise and pound-foolish -- exactly the kind of near-sighted focus that the transformation was supposed to correct. The state may save $2,000 giving him an inadequate wheelchair, but it will eventually end up paying for additional medical procedures as his condition deteriorates. “Paying that $2,000 extra keeps me in better health, but also allows me to be in the community as well.”

The state’s CCOs in all probability do have the money to pay for this equipment -- while spending more than $2 billion in the first three quarters of 2014, the CCOs netted at least $180 million in profit.

Need for New Law

Lowe is not exactly a stranger to the Capitol -- he serves on a number of advisory committees, both at the DHS and the Oregon Health Authority, but he said during his battle with the state, he asked for help from the offices of both former Oregon Health Authority Director Bruce Goldberg and former Gov. John Kitzhaber, only to be given the cold shoulder.

Now, he’s working with his Republican state legislators, Sen. Chuck Thomsen and Rep. Mark Johnson of Hood River, to set about a change in state policy through legislation.

“He did a terrific job of advocating for himself,” Mullin said. “What’s so compelling to me is that he took it upon himself to work on this issue for other people.”

House Bill 2937 directs the Oregon Health Authority to make certain that people with disabilities are given the equipment they need to meet their basic needs both in the home and in the community, and align with the state policy at the Department of Human Services that ensures that all people, regardless of any disability, have the right to live their lives with dignity and participate in society.

“It would be a major step forward for people who want to participate in their communities, who want to come to the Legislature to testify, who want to be as engaged as possible,” said Bob Joondeph, the executive director of Disabilities Rights Oregon.

“We want to maximize the ability of every Oregonian to function at the highest level they can possibly function,” agreed Rep. Mitch Greenlick, D-Portland. “The last thing we want is to put barriers in the way of an individual maximizing their abilities.”

Greenlick has tasked the Oregon Health Authority with crafting a clearer fiscal analysis to show how much it would cut into CCO budgets to pay for the better equipment.

The analysis will also show how much wiggle room the state has within its waivers to enact the policy Lowe wants and still receive federal assistance or whether the full cost of such a policy would need to be borne by the state, much like Oregon Project Independence, which assists middle-class seniors with services that help them stay in their homes.

At a public hearing last week, OHA lobbyist Brian Nieubuurt discouraged Greenlick from pursuing HB 2937, arguing that the state should wait for the Centers for Medicare & Medicaid to change the policy at the federal level. “CMS is actually in the process of reconsidering their federal Medicaid requirements,” Nieubuurt said. “We would like to see how that plays out.”

Mullin disagreed with this attitude: “I wouldn’t depend on the federal government,” he told The Lund Report. “We just don’t think of people being homebound in this state.”

The agency has just over three weeks to complete the analysis if HB 2937 is going to move out of the House Health Committee before its deadline. The bill will likely need to move through the legislative budget committee before it could be voted on by the full House.

After fighting state bureaucrats for 18 months, Lowe doesn’t trust the health authority and the Division of Medical Assistance Programs to automatically produce a fair analysis of changing state policy, and has asked Greenlick and Nieubuurt to allow him to oversee the work before it gets finalized for the Health Committee.

Lowe pointed out, for example, that people would still only receive their equipment every five years, and not everyone with a disability would immediately need the more expensive equipment. “It’s not something that’s going to happen every year or even every biennium,” he said.

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