That's because a new provision of the Affordable Care Act set to go into effect Jan. 1, 2014, would largely prohibit guardians from serving as the paid caregiver of an adult child with developmental disabilities. Disability rights advocates and state officials are fighting the provision and say it could restrict family flexibility and choice, especially for single parents who serve as guardians and use the caregiving allowance to stay at home.
Hood's individual service plan allows only her parents or nurses to care for her, meaning that taxpayers would likely foot additional costs should she move to foster care and require 24-hour care from nurses.
The new federal provision aims to resolve a conflict of interest that arises when the guardian who helps develop an individual service plan hires herself or himself as the paid caregiver, which could lead to financial fraud. Oregon has allowed guardians to be paid caregivers for more than 10 years under various federal waivers, and a state official says she can't recall a case where that arrangement was problematic.
The new provision is part of the K Plan, a Medicaid state plan option under the Affordable Care Act. Oregon is the first state in the nation to implement the plan, which emphasizes home- and community-based services.
But the provision will likely cause hardships for the 455 Oregon families where the guardian and the caregiver are the same person. Some families might need to go through a pricey and time-consuming process to transfer guardianship.