SALEM, Ore. — Federal officials have reversed course on a new provision of the Affordable Care Act that would have largely barred guardians from serving as paid caregivers for adult children with developmental disabilities.

Officials with the Oregon Department of Human Services said Friday that federal officials have agreed to work with the state to develop “the right processes” to allow guardians — oftentimes relatives — to continue as paid caregivers. It’s unclear yet what those processes will be, said Patrice Botsford, director of developmental disabilities services for the department.

“We’ll be working on it next week,” she said. “We will do it as rapidly as we possibly can.”

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The news comes as a relief to parents such as Deana Copeland, who feared the provision could have forced her to place her 22-year-old daughter in foster care. Her daughter, Andrea Hood, suffers from cerebral palsy, spina bifida and autonomic dysreflexia, a potentially life-threatening condition, and requires around-the-clock care.

Copeland is both Hood’s legal guardian and paid service provider, for which she receives $1,400 a month.

“I feel elated, but it’s not done,” said Copeland, a Cornelius, Ore. resident who has cared for Hood since she was born. “We have to make sure that families aren’t torn apart.”

The purpose of the federal provision is to protect against the possibility of financial fraud, since the guardian who develops a care plan has the ability to hire himself or herself as the paid caregiver.

However, Oregon has allowed guardians to be paid caregivers for more than 10 years under various federal waivers, reportedly without issue.

The new provision is part of the K Plan, a Medicaid state plan option under the Affordable Care Act. Oregon is the first state to implement the plan, which emphasizes home and community-based services.

Disability rights advocates and state officials have been fighting the new provision, saying it could restrict flexibility and choice for the 455 Oregon families where the guardian is the paid caregiver.

Although Copeland is ecstatic about the prospect of continuing as her daughter’s guardian and caregiver, she’s also confused and exhausted over the procedural hurdles of the new law.

“Every can of worms I open, I feel like there’s just another can of worms,” she said. “All of our energy goes into learning about our child’s medical needs. To try and learn all the politics involved in it, too? It’s just too much for some of us.”

© 2013 The Oregonian (Portland, Ore.)
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