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Discussion: Caring for Parents in Iowa

posted on April 1, 2008 at 11:08 AM


Decisions on care and living situations are tough enough for family members. But there are added issues to investigate that have been in the news in recent weeks. How safe are the seniors in residential homes such as long-term care or assisted living? Can the public find out if a facility has been investigated on accusations of elder abuse? Or can they find out if the homes are inspected and have been given a poor rating? State lawmakers have drafted legislation to deal with dependent adult abuse. But as the session winds down will those bills survive? These are just a few of the questions we'll ask our guests.

Beck: Anthony Carroll, Associate State Director for Advocacy for AARP and John McCalley, Director of the Iowa Department of Elder Affairs. Gentlemen, thank you for being with us.

McCalley: Thanks for having us.

Carroll: Thank you.

Beck: This story told so many points of view. One, it's often a trauma or a tragedy that leads family members into this decision of some sort of adult daycare or assisted living or long-term care facilities. So, sometimes there's not much of a chance to do an investigation. If it's a stroke or something where they need immediate care what can a family member do quickly to help place Mom or Dad?

McCalley: Oh, absolutely. The first thing I would recommend is that you get in touch with your area agency on aging and you can do that by going to the Web site, lifelonglinks.org and simply clicking on service finder. You can access any service A to Z in any county in the state and then get connected to the area agency that contracts with that service. There is also a toll free number on that Web site in case you prefer to navigate those services through a telephone.

Beck: Anthony, is this something that we should be discussing with our parents before that emergency happens so that we can do some investigation with them part of the process?

Carroll: Absolutely, Jeneane, that story did really illustrate a couple of things. First of all, there is the fact that a lot of people don't plan in advance to become a caregiver. But in that situation Elizabeth was a caregiver. I would start by saying one of the great resources that AARP offers to both our members, 390,000 members in the state as well as anyone can access at www.aarp.org/caregiving. It's a Web site that we have revamped to offer information about whether you're going into an assisted living center or if you're caring for your loved one at home, there's a variety of information for people if they are either planning to be in that situation or as this story illustrates after something has occurred that they are going to need to access those care services. But the other interesting part of that is that Elizabeth is what we call an informal caregiver. She is the person who doesn't get paid to provide care for her mother-in-law and her other relatives. But she has a role, as well as the assisted living center, her role is to take that family member to the assisted living center and there is economic value there. So, I think there's something that we're finally just beginning to realize the value of those caregivers, those people who don't get paid to provide care. We just issued a report that appropriately is called The Value of the Invaluable and nationally the value of those caregivers who don't get paid is put at $350 billion which is a high number in and of itself but that is more than what we pay nationally for Medicare. In the state it's $3.5 billion. And the way we estimated that value of people like Elizabeth, the amount of time that she takes off from work, either she leaves early or perhaps hers or others, these caregivers who move from a full-time job to a part-time job. So, there is a real value in the caregiving. And the second part of that story is the good news that there are more options in assisted living that people can go in to take their family and not have them actually be in a traditional facility but have their loved one cared for during the day.

Beck: It sounds like the first question for most people is, is my family member safe? How do they determine that? How do they know that the facility whether it be a daycare, whether it be long-term care or assisted living that their family member is in a safe environment?

McCalley: The first place to go is check out the Web site that the Department of Inspections and Appeals has and that's pretty simple to find, dia.gov in the state of Iowa. For long-term care facilities, traditional nursing homes they have reports and so forth that are kept fairly regularly updated by code. There is also a nursing home compare aspect of that and if you are shopping for long-term care services that are nursing home related you can do a pretty good job of comparing or at least getting started comparing. That doesn't preclude that you need to go and visit the facility and talk with the staff and the administrators and get a sense yourself of how good the facility is. With assisted living there has been a little bit of a problem in terms of having that information directly available. So, fortunately there is some legislation moving through this general assembly to make that more publicly available more quickly. The inspectors' reports will be online as quickly as I think it's a two week period. And that legislation seems to be sailing through the general assembly which is a very good, positive step. With assisted living there are additional complications because it is growing very fast as an industry and there are new facilities being built daily. And so you really do need to visit the facility and talk with the administrators and be absolutely certain that's the choice that you want to make. A lot of times the choices of services that you might get in assisted living are just as easily accessible in the home where you live. And we know survey after survey, AARP survey after survey indicates that people want to remain independent as they age. And we have an interesting dilemma in this state, we have one of the older populations but we also have about half of the state resources in long-term care being spent in facilities and not necessarily in the home and community based service choice that people are asking for.

Beck: And wouldn't that be less expensive to stay in the home longer with some in-home care at least for the years that you can do that?

McCalley: For individuals it can be less expensive depending on the mix of services so it's not easy to sit here and say categorically it's less expensive for an individual but it may be. We know that system wide it could have a huge impact on Medicaid spending. It wouldn't reduce Medicaid spending but it may reduce the rate of growth at the same time providing a level of service and helping older Iowans remain independent as they age and volunteering, participating in the community activities, activities in their church and so forth. And as we look forward there were a lot of statistics that you recited at the beginning of this segment. By 2020 about 20% of the population will be 60 plus and that is a statewide average. In the rural areas it will be 25% to 30% will be 60 plus. And that is a huge concern. You talked about the increase in cost related to food and gasoline currently impacting services right now. Well, without an increase in Older Americans Act funding, without further commitment from the state legislature on home and community based service development adult based service programs like you saw in the previous segment aren't going to develop out, the infrastructure won't be there and we won't be yet ready for the boomer generation to retire in the way we know they want to.

Beck: Anthony, another piece of legislation that is moving at the statehouse is the definition of who the caretaker is in some of these facilities because you often think that might be the nurse's aid or the actual nurse but there are other people that come in contact with your loved one at a facility that may not fall into that category if there is an abuse situation.

Carroll: That is true, there is a piece of legislation that, first of all, one of the first things it does it actually changes the definition from caretaker to caregiver. But the other thing that it deals with the fact that right now in elder group homes and assisted living centers as well as adult day services Department of Inspections and Appeals whose responsibility it is to investigate facilities, make sure they are of regulatory compliance right now they do not have the responsibility to actually investigate elder group homes, assisted living centers and adult day services. So, there is legislation fortunately that is moving forward that would change that so that the Department of Inspections and Appeals would be able to go to assisted living centers and actually do investigations as well as clarify what they actually do when they get to those facilities. So, family members can have some baseline assurance that in this case, Elizabeth, that her loved one in whatever facility she goes to whether it's an assisted living center or adult day services that there's going to be some baseline assurance that there's going to be some regulatory compliance and more assurances that adult abuse will not take place in those facilities.

Beck: John, do you support that legislation? And are you optimistic it will be adopted?

McCalley: Yes and yes. There have been a lot of conversations behind the scenes and at the subcommittee level led by the Department of Inspections and Appeals to bring the parties together and it appears that it is moving through the legislature quite successfully right now.

Beck: Let me ask you, Anthony, as a representative of the AARP, what kind of grade or that you can say about Iowa, how we compare to other states in our rates of abuse or in our fines and penalties? Because I know that there has been some concern that the fines and penalties for Iowa long-term care facilities are too low, that they might even consider it a cost of doing business. Do those need to be increased?

Carroll: Interesting enough you should say that. We do have -- start with the fact that when statistically -- I'm taking these statistics from our Department of Inspections and Appeals -- that we do have in terms of the number of complaints and investigations of abuse or problems within a facility, statistically we're better off than most states even in the Midwest. Our deficiency free surveys, that is one of the measures of whether or not you have a facility that is in regulatory compliance. At Iowa I believe it's at 46%, over 40%. That is much higher than the states around us. So, correspondingly you also see the number of actual citations for what the federal government has called a sub-standard quality of care within the facility. The citations are much lower compared to the other states around even the Midwest. For instance, Kansas, when you look at their number of nursing facilities they are over 10% and Iowa the number of citations were at 1.5%.

Beck: So, we do a good job you think?

Carroll: I think that is a reflection of the higher quality of care in necessitating hopefully less fines and less penalties against facilities. But make no mistake about you still have problem facilities. I think anyone -- you read in local papers or state papers of problems that do exist in facilities still.

Beck: John, if a family member is concerned about the care their loved one is receiving where do they go? Who do they report it to?

McCalley: Oh, they can report it to the Department of Inspections and Appeals first and a resident has a right under federal law and state law to protect their rights or request the services of a long-term care ombudsman and that unit is within the Department of Inspections and Appeals. The state long-term care ombudsman employs staff and has a volunteer network across the state in all of these facilities and people can talk confidentially with those staff and volunteers if they need help with the trouble they are having within a facility.

Beck: I have just a few seconds left but is there one thing you'd like to do next year that's not going to get done this year?

Carroll: Yes, for all people that have problems, there's a lot of stories on long-term care insurance, one of the things that Iowa lacks that all other states have is a private action against consumer fraud for individuals. The only state that doesn't have it, it's unacceptable and we'd like to see that change.

Beck: Alright, thank you both for being here tonight.

Tags: aging health care Iowa Medicare nursing parenting

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