Parent caregivers of severely disabled children are lobbying lawmakers for funding that would allow them to continue to be paid for their work. They say the program, which began in the pandemic but ended in May, resulted in dramatically lower health care costs and an 80% reduction in reported hospitalizations.
Bradley W. Parks / OPB
The longest legislative walkout by Oregon Senate Republicans in state history had meant the death of any number of bills. Now that legislative leaders have reached a framework for a possible deal to bring lawmakers back to the capitol, some may have new life. But the fate of one caregiving proposal was unclear even before the partisan boycott: a bill to allow parent caregivers of severely disabled children to continue to be paid. Advocates say the program, which began in the pandemic, has resulted in dramatically lower health care costs and a reduction in the number of hospitalizations.
According to these parents, “Of families that participated in the parent caregiver program, 80% reported reduced hospitalizations, 73% reported reductions in calls to 911 or crisis intervention, and 82% reported extreme concern about the risks to their children’s health since the program ended in May.”
Parents rallied last week at the capital in an effort to call attention to what they say is truly an emergency, and in lieu of the bill, get support for a budgetary note to continue this funding. We’re joined by Calli Ross, who cares for her 8-year-old son who manages severe disabilities.
This transcript was created by a computer and edited by a volunteer.
Dave Miller: From the Gert Boyle Studio at OPB, this is Think Out Loud. I’m Dave Miller. As we just heard, the legislative walkout by Senate Republicans has meant that a lot of bills could die. But the fate of one proposal was unclear, even before the partisan boycott. It would allow parent caregivers of severely disabled children to continue to be paid for their work. The nationwide program began during the pandemic, but it ended last month. Advocates say the program dramatically lowered health care costs, reduced the number of hospitalizations and improved families’ quality of life.
Parents rallied last week at the Oregon Capitol in an effort to call attention to what they say is an emergency. Callie Ross is one of those parents. She cares for her 8-year-old son who has severe disabilities and she joins us now. Welcome to Think Out Loud.
Calli Ross: Thank you for having me.
Miller: Yeah, thanks for joining us. Can you give us a sense for your son’s needs? You know, what an average day and night are like?
Ross: Of course. So my son, he is ventilator-dependent and oxygen-dependent. He is diagnosed with end-stage heart and lung disease. So he is very medically fragile. Prior to that diagnosis, he did have a cardiac arrest that lasted 33 minutes which caused an anoxic brain injury, similar to cerebral palsy… basically cerebral palsy, but since it didn’t happen at a super young age, he was five, they diagnosed [it] as an anoxic brain injury. But he is nonmobile, nonverbal and requires 24-7 hour care. In fact, the state of Oregon has deemed him needing 554 hours of attendant or nursing care a month, which right now, we don’t have any of those hours currently filled.
Miller: Oh, I can’t do the math in my head quickly, but that’s most of the day, right?
Ross: Yes, I think it’s 16 hours a day. It’s the max that Oregon will allow. They still feel the parent needs to be a parent at least eight hours a day.
Miller: And none of those are currently filled.
Ross: None of those hours are currently filled by outside help. My mom is here, she signed on as a DSP [Direct Support Professional] to help us out and we can help her out a little bit. But she’s not fully trained and everything and I’m still there with them, 24-7. She helps out when I need a nap or a shower, but she isn’t able to take care of him on her own.
Miller: We’ve zoomed ahead to the present, but I want to just get more of the context here…
Ross: Sure.
Miller: How did you manage care for your son before the pandemic? And before that, that public health emergency change, in terms of who could be paid to care for him. What was life like before the pandemic?
Ross: So my situation is a little bit different because my son’s cardiac arrest happened in January of 2020 at the very beginning of the pandemic. However, before that, he still had his tracheostomy, he still needed his vent at night. My husband was working two jobs. We had a nurse, and we hope to have this nurse again. She is just out on prolonged leave due to several surgeries she had to have. But yeah, I don’t know, I don’t think I’ve slept in eight years. So that’s kind of where we are.
I can’t really tell you what life is like because it’s been such a blur of no sleep, constant financial stress, not being able to afford the very basic necessities for my son. You know, it’s been difficult, and I am probably one of the privileged few that does have a spouse and that does have a secondary income from my spouse. And we struggle but we are not struggling like other families we’re seeing right now, who are facing homelessness and institutionalization, having to move out of state.
Miller: What did change for you under the then new rules of the pandemic?
Ross: So, like I said, my son is allowed 554 hours a month of nursing or attendant care. And I was allowed to sign up to be his attendant or his DSP. So in that time, my husband ended up working only one job which cut his hours almost in half. He went from about 90 hours a week to 50 hours a week. He was able to provide respite. He was able to give me some time in between when he was working, to sleep and to eat and to shower and to just take a moment to myself. I was able to go to Target for the first time in years alone. So, I mean, it was a big deal in that sense, but it was a bigger deal in what it provided for my son. We were able to afford specialized therapies, we were able to afford a ridiculously expensive potty chair. We were able to start putting money aside for a wheelchair accessible vehicle, which costs thousands upon thousands of dollars to be able to get him out into the community more. I mean, it was truly life changing for him as well.
We’ve had some incredible caregivers, [but] we’ve also had some not so incredible caregivers. For the first time, my son was having these long periods outside of the hospital. Mistakes were not being made… constant little errors about medications, and sometimes he stops breathing and we’ve had nurses bag him incorrectly, shooting his CO2 up and just putting us into a horrible emergency situation. We’ve had nurses that have given him too much sugar when he has a hypoglycemic low that have pushed his blood sugars up into the six hundreds. It’s human error, but it doesn’t happen when you’re his parents and you know everything there is to know about him.
Miller: If I understand correctly, in a sense, it seems that being able to actually be paid as a parent, it meant that you could be paid for work that you were doing anyway. It’s not like you then started taking care of your son. It meant that you could finally be paid for this near constant work. But you also then had more freedom as a family for your husband to work less and for you as a family to have slightly more money where you could then provide him better care and better services.
Ross: It provided my son with a quality of life and in the same sense, it provided my family with the quality of life. I think one of the politicians I spoke to that was in favor of this, told me once that parents are the most exploited workforce. We are willing to do this work for free, this above and beyond natural parenting carers, we will definitely do it for our children, especially in a state like Oregon where you do not have institutionalization and you do not have appropriate foster care beds. We want our children to have the best quality of life. So we’re here. Oftentimes there’s been days where I haven’t slept in three days just to make sure that my son has quality care that he is taken care of and that he is comfortable and happy and loved and safe and sound.
Miller: As you noted, the state of Oregon has authorized your son to get 554 hours of care a [month], and you said that right now, nobody is actually signed up for that. Why is it that you haven’t been able to find somebody to provide this care [now] that the money is there?
Ross: So that’s what we hear. If suddenly the workforce existed, the state would still have to pay for these hours, but the workforce does not exist. Home health care nurses, their pay is half of what you will see in a hospital setting. You have direct support workers who are underpaid as well, oftentimes they are not up to the task. The only qualification to be a DSP is you have to be 18 years or older and not a felon, or the parents. Those are the only qualifications and…
Miller: Meaning, the only people who can’t be hired for this are people who have criminal records and parents.
Ross: Felonies…criminal records are fine, but felonies are…
Miller: …specifically felonies…
Ross: Yes, it’s ridiculous. Honestly, it blows my mind. And as soon as our children turn 18, then parents are then allowed to be the caregiver.
Miller: How has that prohibition been explained to you? The current prohibition on paying parents to care for their children who are under 18?
Ross: I mean, there’s two kinds of prongs to this issue and one is self-advocates, some have rallied against this, some have been very, very for this. But there is a concern about self-actualization, self-determination: When the child turns 18, if their parents are receiving money, will they allow that child to go? And our answer is, ‘Well, if you’re a good parent, you will be encouraging independence all along.’
Also, the bill that’s currently being proposed, is not for children that are likely to be able to have that kind of self-actualization, self-determination. And I also want to say that, you know, I have a 12-year-old, typical child as well, who does not have self-determination. He still has to do the dishes and pick up dog poop. And he’s still under my… not control, but my voice, you know, he listens to what I have to say and he has to do it because he’s 12.
Miller: What were the prospects for a bill to extend this program, before the Republican walkout in the Senate six weeks ago?
Ross: Well, ironically, it was the Republicans that first put forth the bill that we really, really were hoping for. It was more inclusive, it provided for much, many more children. Senate Bill 646, it did not make it through committee. What did end up going through committee was a committee bill, a Human Services Committee Bill, Senate Bill 91 – and frankly, we had all thought that this was a shoe in – it had a very low budget, so it’s likely to have a lot of restrictions on a whole bunch of things. It’s not an ideal bill by any means, but it was a ‘foot in the door’ bill and we thought it would go in for sure. But unfortunately, last week, it was not introduced to the subcommittee on Ways and Means. So it had been dead in the water and we were looking at a budgetary note as a last ditch effort.
Miller: A budgetary note...so a way to get some more money in a more of a roundabout way.
Ross: Basically, it’s like a bookmark that would then allow the agency to apply for the waiver that would then apply for the program. But there’s no guarantee that the agency would do it. It’s just an opening and then we would have to go to short session in February to actually get it funded.
Miller: Can you give us a sense for the kinds of conversations that you have when you go to the Capitol to try to lobby for this provision?
Ross: I’m kind of there every day now and this is something I’ve been working passionately on for over a year. So I’ve made some connections from networking with many members in the capital. And the overall sense is that absolutely, this needs to be done. This is a no-brainer. It’s good for families. It’s good for the state. So we were surprised when it didn’t make it to committee, and we heard some negativity especially from Rep [Representative] Sanchez that it was a budget issue and that the state just didn’t want to pay parents for these hours, but it just wasn’t that. But I think things have kind of changed in our rally, I hope, made a difference. I think it makes a difference when people see these children and see what’s going on with them…
Miller: Wait… because when you say that you’ve spent every day in Salem, you go with your son and other parents go with their children?
Ross: Yeah. Well, I am always there with my son mainly because another bill, Senate Bill 819 didn’t pass, which would have encouraged schools to not have shortened school days without parent consent. And unfortunately, that one got stuck as well. And now my son doesn’t have anybody. There’s no nurse for the school either, so he’s not in school at the moment. So he’s able to accompany me to the Capitol pretty much every day to put pressure on legislators for this bill and for Senate Bill 819.
Miller: Were you able to get any firm commitments from lawmakers for the budget note version of resuscitating this provision?
Ross: I mean, I don’t think I’ve ever had a firm commitment from a legislator, but today I attended the Ways and Means Committee meeting and Senator Steiner had come over and talked to me and said she couldn’t make any promises, but there had been a lot of talk this weekend and it seems like Senate Bill 91 might have some life again.
Senator Gelser Blouin, who was the drafter behind the committee bill of Senate Bill 91, also is feeling more optimistic that this bill might see the light of day or if not, a budgetary note might still make it through the process. So last week, I would have said we are not very hopeful for anything to change, but today, I am feeling cautiously optimistic.
Miller: What do you think you are most hoping for? If some version of this does pass, what’s next for you and your family in terms of your wish list?
Ross: I mean, ideally, we would be able to figure out gap funding for the families that were pushed off the fiscal cliff on [May] 11th when the public health emergency ended, because this bill, even if it does pass, will not be enacted until July. And it’s not a ‘yesterday’ kind of thing. It’s ‘two weeks ago’ that this needed to happen or three weeks ago that this needed to happen. Families are just suffering. So I think that would be my number one thing. And I’d love to see a higher budget on this Bill so that it can be inclusive to more children. I do not think it’s going to meet the needs of the population that it truly has to serve. And I would love to see more work go into increasing and building up the workforce because while parents are here and we want to do this, many of us still need support.
Miller: Calli Ross, thanks very much.
Ross: Thank you.
Miller: Calli Ross is a mother of a medically fragile 8-year-old son. They were in Salem last week. They often are in Salem lobbying lawmakers to bring back a now-ended program that let parent caregivers of severely disabled children be paid for their work.
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