The Affordable Health Care Act has unexpected and sometimes unpleasant consequences.
One came up last week affecting caregivers who are also guardians of developmentally disabled adults. And possibly all caregivers who are also guardians.
Basically the new law – or more accurately the regulations of the new law – prohibit guardians from receiving Medicaid payment as caregivers. The controversy is explained in the Caregiving With Purpose recent post Affordable Health Care Act: New Problem For Family Caregivers?
And as of last Friday there’s a new development…
Federal officials reverse course on disability provision of Affordable Care Act
SALEM — 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 state Department of Human Services said Friday that federal officials have agreed to work with the state to develop “the right processes” to allow guardians — often times 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.”
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. The pair was featured in a story by The Oregonian earlier this week.
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 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.”
— Yuxing ZhengOriginal Source:
Oregon appears to be the first state affected by this provision of the health care law. And it looks like the federal government may be agreeable to developing guidelines for waivers for caregivers who are also legal guardians.
While the concern about financial fraud is understandable, there must be a kinder way to handle it. Obviously the author of this provision or regulation does not have a caregiver’s heart. This also adds to the often overwhelming caregiver stress and pain.
It makes little sense to create a rule and then have many waivers and exclusions, enough to create confusion and a ton of paperwork. Does this mean potentially 50 waivers for 50 states?
This whole issue brings up more questions about the Affordable Health Care Act, such as –
- What about the people who don’t fall into the waiver category but have just as much or more pain from regulations like these?
- While Oregon’s efforts are encouraging, what about the other 49 states?
- Could implementation of these regulations be postponed for further study?
- What other issues affecting caregiving are hidden in the rules and regulations of this law?
- Who speaks for caregivers in the decision-making process?
Unfortunately there are no clear answers to these questions. They should be asked, and more too. Caregivers do not need the added stresses and strains of burdensome regulations to the overwhelm of giving care.
Caregivers are often so busy giving care they cannot take care of themselves, let alone decipher rules and regulations affecting them. As a caregiver, you should have expert advice from your own advisors – medical, legal, financial, etc.
And rather than feeling alone in your struggles, now there’s a membership designed just for caregivers. Where you can find answers and discuss challenges. Get your trial membership for 7 days for only a penny!
Remember, how the Affordable Health Care Act will affect caregiving is just now coming to light in preparation for its implementation in 2014. Because there will be variation between states, everyone affected should stay up to date on its provisions both federal and local.
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