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

By Yuxing Zheng, The Oregonian

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 Zheng

Original Source:

Federal officials reverse course on disability provision of Affordable Care Act

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!

Click here now to see how to join our community by claiming your 7 Day 1-Cent* Trial Gold Membership.

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

Original Post:

Update on Affordable Health Care Act: New Problem For Family Caregivers?

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Update on Affordable Health Care Act: New Problem For Family Caregivers?

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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

By Yuxing Zheng, The Oregonian

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

Original Article:

Disability rights advocates, families fight new provision of Affordable Care Act

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.

Click here now to get your 7 Day 1-Cent* Trial Gold Membership.

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

Original Post:

Affordable Health Care Act: New Problem For Family Caregivers?

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Affordable Health Care Act: New Problem For Family Caregivers?