The Affordable Health Care Act, also known by several other names including “Obamacare” apparently now creates a new problem for family caregivers.
According to this article from Oregon, a new provision prevents guardians from serving as paid caregivers…
Disability Rights Advocates, Families Fight New Provision of Affordable Care Act
SALEM — Deana Copeland has cared for her 22-year-old, medically fragile daughter since she was born, but she’s afraid that a new provision of the Affordable Care Act could force her to place her 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 could never expect somebody else to address her needs the way I do,” said Copeland, a Cornelius resident. “In our specific situation, it is going to cost the state exponentially more to do less care for Andrea if Andrea has to be cared for in a center.”
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.
“There’s absolutely no doubt that this requirement will be disruptive for a number of families,” said Bob Joondeph, executive director of Disability Rights Oregon. “We have to recognize that families play an important role as service providers.”
Officials with the Department of Human Services last week submitted to federal officials a draft request for exceptions to the provision, said Patrice Botsford, director of the department’s disabilities program. The state is proposing to allow guardians to delegate their authority to develop individual service plans to a third-party person. The guardian would retain all other powers and could continue to serve as the paid caregiver.
Rep. Sara Gelser, D-Corvallis, is also considering introducing legislation in the February 2014 session that would allow guardians to continue as paid caregivers.
“We’re really focused on choice,” she said. “We don’t want to tell Oregon adults with developmental disabilities that they can’t choose somebody to support them because of this (guardianship) relationship they have with them.”
Copeland is married and could transfer guardianship to her husband, but even then, it’s unclear if she could continue as the paid caregiver, she said. She fears the prospect of no longer caring for her daughter.
“At this point, if something doesn’t change, our only option might be to put her in foster care,” she said.
— Yuxing Zheng
This article addresses the concerns of parents caring for adult children with developmental disabilities. The new ruling effective January 2014 prohibits legal or formal guardians from receiving Medicaid payments as caregivers or care providers.
It appears this is a way to make all the rules consistent, for guardians of adults with developmental disabilities, seniors and other adults with guardians. At least in Oregon, the plan for care must be in place by December 1, 2013 and the rule takes effect January 1, 2014.
Likely there may be some state-by-state variation, so it is prudent to check with your own lawyer and Medicaid office if you think this provision in the Affordable Health Care Act will affect you.
Every day caregivers find themselves facing new challenges. And it’s not just directly related to giving care.
Their challenges can include…
- Physical limitations and stresses…
- Emotional stresses and pains of caregiving…
- Spiritual challenges as caregivers question “Why?”…
- Financial problems in juggling giving care and an income…
- Stresses associated with dealing with governmental rules and regulations.
Now there’s a membership designed just for caregivers. Where you can find answers and discuss challenges.
From my heart to yours… Laugh Well, Love Well and Live Well!
Ina Gilmore, M.D. (Retired)
“The Knitting Dr.”
Founder, www.CaregivingWithPurpose.com and www.TheKnittingYarn.com
Ambassador of Caregiving at www.HowToLiveOnPurpose.com