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Feds Reverse Course On Disability Provision Of Affordable Care Act


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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.”

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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Comments (22 Responses)

  1. martha says:

    If they would allow this in NJ, my son would be at home instead of in a group home receiving sub-standard care.

  2. Betty says:

    My son suffers from CP, uncontrolled seizures and required 24 hrs care/supervision. He is at home and receives services through Medicaid. I could not imagine him living In a group home or state facility. As his condition worsen in 1999 I gave up my RN position be home with him. When he became an adult I started working as a paid caregiver. The pay is close to minimum wage, so it not for the money. But the wages do help with affording the materials, supplies required to provide adequate care. I am not sure where the fraud could come into play. I definitely could make a great deal more money as RN. Supervisions are made by outside agencies to insure the care being provided is in accordiance with the states guidelines. I hope all parents/guardian will continue to advocate for parents as paid caregivers.

  3. Carmen Allen says:

    disturbing all the hurdles people have to go through to care for those they love. someone obviously didn’t think this one through, glad to hear they reversed it :)

  4. Barb says:


    You are awesome.

    I deal with so many families who dumped their family member years ago and never looked back. No hired aide or paid staff can take the place of a family where there is love and a willingness to provide care.


  5. jackie says:

    special needs individuals require special care- who better to give that care than the family who love them- provided it is a healthy family dynamic. i would like to know the quality of the care is being monitored, as caregivers get tired/burnt out, especially if there is no back up for them. just as hired help can give quality care, or awful care, or no care at all, the same is true for families- individual cases need to be looked at, and IF it is a loving family, with the best interests of the person at heart, than why not pay them ? the money doesn’t sound like a lot, but perhaps it is enough to tip the scales in allowing the person to remain with people who love her/him. i hope it allows for some fun time too, even home schooling can get boring if the person never gets out.

  6. sarah says:

    The government should allow families the ability to be creative and innovative with their adult children and stop thinking that they know better than the families themselves. The disabled are not a cookie cutter bunch and the government offers only cookie cutter solutions. We have to stop thinking that the govt. is the only place to look for help and look within ourselves and communities for better solutions.

  7. CJ says:

    Hi Barb, I understand your frustration with parents who dump their kids and never look back, I’ve seen it happen way too many times with not so pretty results. But I hope that people realize that not all who place their adult children into some sort of group home or adult foster care are dumping them. My 25 year old son currently lives with me and my husband. I want to get him into some sort of housing by the time he’s 30. Not because I’m tired of having him around, but because we are getting older and I don’t want my son’s first experience living away from us to be when we die. I want to be around to help him transition and to be a back up if something goes wrong. It would be emotionally easier for us to let him live at home until we do die because the thought of him not being with us is awful. But it would be harder for him. That said, I do think that parents who become guardians of their adult children should be able to be paid. Some of the housing options are horrible and families who feel it’s best for their child to remain at home shouldn’t have to face poverty because of it. In the end, it’s a lot cheaper for the government when we take care of our own families.

  8. Darlene says:

    This isn’t just a problem in Oregon but everywhere. I’m a parent also of a child with a disability and want to keep him home with hs family. It would be very difficult to work because of the care required. So expecting us to hire outside workers( if you can find one, and trust them) is ridiculous. No one would give the kind of care every individual deserves like their relative.

  9. Darlene says:

    I agree with Bette. Also, Martha this type paid care is in NJ. It is called the Personnel Preference Program and it is through Medicaid. If your child is eligible for Medicaid then you can participate in it.

  10. Mary Ashland says:

    Ms. Copeland has hit the nail on the head when she talks about “opening a can of worms” Even when people get services for their special needs children. they still have a lot of hammering to do to make things work. My question is when do I get paid for all the work I have to do to make these services work???

  11. Steve says:

    CJ, we are in the same situation as you. Our son is 19 and we are nearing 60. Transition will be the hardest thing for us to do but I agree that better now than when we are dead. He is quite physical so that presents some challenges in placement plus he isn’t capable of taking care of all his needs independently. We are still trying to find a solution but here in Oklahoma the state is cutting aid rather than providing any alternatives. Gets pretty lonely out here sometimes.

  12. David Snow says:

    Medicaid is such an underfunded mess here in South Carolina, I would be surprised if they would allow guardian caregivers of their adult children to receive even minimum wages but I am very pleased that the federal government has moved in that direction. Our son has CP and my wife and I stay at home to care for him. He is 13 now and too big for her to handle alone. We’ll see in 4 1/2 years what SC allows for guardians who provide custodial care of their adult children.

  13. Cheryl says:

    I do not understand why family members are being paid to do something that they should be doing for free. Since when is it a paying job to be a parent? It’s ridiculous and insulting to people with disabilities!

  14. Regina says:

    This program makes so much sense. It gives family members pay for caring for their child in their home. This keeps the family intact and prevents the caregivers from going under and then having to place their child in a group home or developmental center or a nursing home, all much more costly. Administration simply has to make sure that fraud does not happen, a small price to pay.

  15. Lynnrx52 says:

    Thank goodness! Do these politicians actually KNOW any of the good guardians who have SACRIFICED EVERYTHING to no only do the unbelievably difficult task of eternal care for a loved one with such complex issues but save the taxpayers a gazillion that would otherwise be spent to do the same? And in the name of cutting down on fraud? Fraud is not that hard to find. If the case workers who visit these families can’t figure out if there is fraud, then it is the case workers who need to be investigated.

  16. Becky says:

    In response to Cheryl’s comment, I believe you need to broaden your scope. I, too, believe that families should be responsible for caring for each other. I was my father’s caregiver for many years. I knew he would not want to go into a nursing home,so I moved him in with my family and stayed home with him. I needed a second income but could not pursue one and still take care of him ( and I have 2 professional degrees, so I gave up what could have been a substantial income). I could have gotten guardianship over my father and he would have qualified for Medicaid, becoming a financial responsibility of the State. I saved the State money by not going this route, though even 8 years later, I am still trying to crawl out of financial repercussions caused by lack of income for those years. If I could have been paid even a small amount by the State to provide his care, the financial burden would have been easier. It would have been so much less costly for the State to provide this money than to pay for his Medicaid nursing care. This applies to families that take care of their adult children, as well. Providing home and community based services is cost effective and best for the individual in most cases. If it can let a family member afford to stay home with their loved one, all the better. Bankruptcies and home foreclosures are very real obstacles for many families that don’t have 2 full time incomes. These obstacles are also bad for local and global economies; the repercussions are far reaching.

  17. G j K says:

    To Cheryl’s comment: I had to leave a lucrative career to take care of my autistic daughter, a career that I worked and went to school nights to pay for and paid off a student loan for ten years. 19 years later I was a comptroller for a large company with insurance, benefits, pension. My employer was very understanding of the many times I had to leave due to an emergency at school, etc., but eventually said they felt it just wasn’t working (even though I worked late at night at home, they wanted someone available late nights and weekends for emergencies and my bringing her with me was not helpful. So I not only lost my job, but with substantial loss to my future monthly income and I have to pay for insurance at 8K per year for myself and my daughter.
    Atter 5 years I was able to get services which allowed my daughter (her own guardian) to pay me for specific services like independent living skills, transportation, etc. Yes this is stuff I would do for her anyway but it is helping me to pay off debt accumulated to keep our home and keep us afloat while I worked a hodge podge of parttime jobs that paid nothing and no benefits. We are overseen by 2 agencies that visit every 2 months and can surely see that she is well cared for and happy and growing in skills to eventually be independent. I am sure there is possiblility of fraud as in almost any program but this saves the state at least $35k (probably much more) per year by not putting her into a CILA where she would not get near the services I provide.

  18. Geraldine Stacey says:

    If she a single mother that is very low income 350 a week = 1400 a month.

  19. Chrissy Lewis says:

    Just ABSURD! So the so in the long run this so called government wants to rip the precious ppl out of their homes and away from the ppl who love them and MAKE sure these special ones are properly taken care of with NO abuse AND place them in a strange place with strange ppl and more germs and crap floating around for them to get sick and possibly kill them just because its family taking care of them, if you (government) are SO worried with the medicaid fraud or medicare fraud why dont u look closer to your closer surrounding or maybe even ur own pockets! Leave these families alone

  20. Chrissy Lewis says:

    I dont believe you should have a say on this subject if you have never been in the situation as a parent, a nurse or a care attendant. People just dont even have one slight idea of the everyday needs of these children their parents are their only advocates… and yes this is directed to cheryl…

  21. holly says:

    To Cheryl, You do understand that to place diapers, wheelchair, lifting, doctor appointments, feeding, blended food takes many blenders to go through, bathing, meds, and suctioning, entertaintment and constant vigilance of a 19 yr old is not the same as taking care of a 2 year old. Also guess what, if you don’t pay your utility bill you get no utilities. No rent or house payment and you get no house. In order to get to the grocery store, doctor, and work you have to put gas in your car or live in town and take a bus which still takes money. Many many things takes money.Working full time means care at home. doesn’t happen. Plus they don’t have day care for the disabled. Your thinking about little kids or the elderly end of life. Also there is medical insurance. That’s why you have a job. Or else you spiral down from the isolation and eventually have a feeling of hopelessness. I’m fighting with that now. Getting my daughter inhome care or group home 2 to 3 days a week has been a nightmare, you have to do all the agencies jobs for them. You not only have your own job but the job of caring for your total care adult and the job of working for various agencies and their jumping of hoops. Or else its euthanasia. Can’t have your cake and eat it to. sincerely,
    mom of adult child in west mich

  22. Lucy says:

    So, Cheryl, I assume you have an adult child with disabilities and you take care of them with no help from any kind of government assistance. Unless you are just wealthy and so you don’t need any outside assistance, please tell the rest of us how you manage to accomplish this. If you do not have an adult child with disabilities that you take care of 100% by yourself, then I must say that your comment is ridiculous and insulting to me as you know not what you are talking about.

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