Oregon launched a program last summer to pay parents who care for their children with severe disabilities or medical needs. Advocates pushed for the Children’s Extraordinary Needs waiver after a similar COVID-19 era program ended in 2023.
But parents say the state program is underfunded and falling short of its promise. It can only serve a tenth of the families that qualify and only pays caregivers for up to 20 hours of work per week. SB 538, or Tensy’s Law, aims to provide adequate funding to expand the program to all eligible families.
Calli Ross is the legislative director for Advocates for Disability Supports. She’s also the primary caregiver for her 9-year-old son, Tensy, who is the bill’s namesake. She joins us to talk about the Children’s Extraordinary Needs program and the legislative push to expand it.
Note: The following transcript was transcribed digitally and validated for accuracy, readability and formatting by an OPB volunteer.
Dave Miller: This is Think Out Loud on OPB. I’m Dave Miller. Oregon launched a program last summer to pay parents who care for their children with severe disabilities or medical needs. But parents say the program is falling short. It can only serve a tenth of the families that qualify, and only pays caregivers for up to 20 hours of work a week. So some of those parents are headed back to the legislature in support of an update.
Calli Ross is the legislative director for the group Advocates for Disability Supports. She’s here with her 9-year-old son, Tensy, whose name is on the bill she is now pushing for. It’s great to have you back on Think Out Loud.
Calli Ross: Thanks for having me.
Miller: Can you remind us what medical issues your son Tennyson has?
Ross: Sure, he was born with a couple different genetic issues. He has a form of primordial dwarfism, and 1p36 deletion syndrome, which causes seizures and whatnot. When he was 1, he caught a bad cold that left him with a lung disease. At 4, he started having really bad seizures that caused aspiration that further hurt his lung disease. And then when he was also 4, he had his first cardiac arrest due to a pulmonary hypertensive event. He was without oxygen for over half an hour. He did survive that, but he survived with severe brain injuries.
Then just this past summer in June, he had a second cardiac arrest at a parade at the Junior Rose Festival. His dad and I had to perform CPR on him. He was gone for about an extra 11 minutes. And he has come back again, amazingly, but with further brain injuries. And we know that he won’t survive another cardiac arrest.
Miller: As I mentioned, he’s with us right now. He’s with you. Where would he be right now if he were not with you?
Ross: He is always with me. We do not have a caregiver. He needs two caregivers at the very minimum. So he is either with me and our fabulous nurse who is off today, or he is with me and my 14-year-old son who I brought to the studio. Or he is with me and his father, or one of our DSPs as well.
Miller: Can you give us a sense for the other kinds of medical conditions that other families are dealing with? We’re talking about, as I mentioned at the beginning, children with severe medical needs or disabilities. What does that entail?
Ross: I want to preface this by saying it’s not just for children with medical needs. We’re also looking at the highest needs, behavioral. And a lot of these children will qualify for this program. You have children that elope, children that want to sneak out at night and parents that have to watch them 24/7. While Tensy, with his ventilator, his oxygen and his feeding tube, it’s easy for people to look at him and say this child has high needs. But you see a lot of invisible disabilities with the behavioral children that need just as many supports as Tens does.
These are children that have been deemed the most vulnerable in Oregon by state assessments. They have been evaluated by state caseworkers and they’re given these hours every month. Tens qualifies for 554 hours a month because of his severe needs.
Miller: I can’t do the math quickly, but what does that mean in a day?
Ross: I believe that’s about 16 hours of care a day. The state feels that parents do have to do some natural support, so it takes a lot to qualify for 24/7 when the child is a minor. It’s a lot easier as an adult.
Miller: The last time we talked, it was about a bill at the time that you were pushing for – it had not been voted into law. What was the idea behind Senate Bill 91?
Ross: So Senate Bill 91 was the idea that the top tier, the 5m and 5b – the very highest needs children in the state of Oregon – would be allowed to choose their parent as their paid caregiver, so that these parents could start fulfilling these hours that the state has given our children for these caregiver hours. They were not previously filled for numerous purposes, but one big part is the caregiver crisis. There just isn’t the workforce out there. We are sitting here in front of legislators saying we are the workforce. We are ready, we are trained, we are prepared to work with our children.
Miller: So if I understand correctly, the idea was, “State, you have already said that our children are eligible for X number of hours” – in your case, 16 hours of paid support or so a day – “we want parents to be able to actually be paid to do this work that we’re doing anyway, given that in many case, nobody else is even available to pay to do this work.” That was the idea?
Ross: Absolutely. And I can say from personal experience that legally, anybody that is 18 or older and doesn’t have a felony is allowed to be my son’s paid caregiver. However, with his high needs, we don’t want somebody just off the street.
Miller: Before we went live, you were saying if I need to take care of him in an emergency, I’ll do that. And I said, obviously, that’s OK. And you’d said that during a recent legislative hearing, you had to do an emergency tracheotomy?
Ross: Trach change. He’s got a tracheostomy. So when that plugs with mucus … and he just lost a tooth that morning, so he had extra drainage and secretions. When that gets plugged, that’s his only airway. So when this little tube that goes into his neck is plugged with mucus, he can’t breathe. And that requires us to put him down on the floor out of his wheelchair, switch out his entire equipment, and put in a new trach.
Miller: And the state says that anybody who’s 18 or older, who does not have a felony, could do that work?
Ross: As long as they have a nurse delegate, which means a nurse checks in with them occasionally and says, “Hey, doing OK?”
Miller: But from your perspective as a parent, you want a higher level of medical knowledge and ability?
Ross: Absolutely. Tens does qualify for nurses. We’ve had one nurse for years, but there are no home health nurses. You can ask around anywhere, they just don’t exist. And even then, many of them are not qualified to work with a child like Tens. Many of them are retired from clinical offices, doctor’s offices. Many of them are right out of nursing school. And we ask them to take care of a child that is picky-level care.
Miller: When we last talked, the bill that has since passed was stuck in the Republican walkout. What happened with it?
Ross: So the Republicans actually used it as a bargaining chip to come back. They said “we want this passed, this is a priority to us.” Senator Knopp put that in his priorities, and they were able to get it passed with a very, very small budget. And we feel as a team, the Advocates for Disability Supports, feels very strongly that there should be no budget on this bill. These hours are given, the state would hire anybody else to fulfill them and pay for it. These are not new hours, we’re not asking for anything new. We are just asking that a little box be checked that says parents can also fulfill this role.
And I was telling you prior to going on air that I do this for my friend. Because I am not allowed to be the paid caregiver for my son, who I know best and who I can read like the back of my hand, five nights a week I go over to my friend’s house and I take care of her little boy for 11 hours at night. And then I go back home.
Miller: And she takes care of Tensy. And that’s totally legal because you’re taking care of somebody else’s kid but not your own. And so the state will pay for that, but not for you to take care of him.
Ross: Absolutely.
Miller: How did the rulemaking go? This passed, and then this key thing that so often escapes public attention … Often, we think a bill passes, it becomes law and it’s done, but a lot happens with rulemaking. So what happened with this one?
Ross: With rulemaking, it went to the agency, the ODDS, Oregon Developmental Disability Services. They went out and they asked stakeholders, “We have this budget, the legislature has given us this budget under this waiver. It’s called the Children’s Extraordinary Needs waiver. And this is all the money we have to pay parents. So would you rather have more parents and less hours, or more hours and serve fewer families?” And we said we’d rather really hone in on those families that get this program, give them a workable amount of hours, 40 and above, so that they can support their families, they can bring children out of institutions that Oregon says we don’t have (we do). We can allow parents to have that stability to take care of their other children, to support their own lives, their own homes, and get actually paid for this caregiving labor that they’re performing pro bono. Which is fine because parents will. We love our children. We will do this ‘till we’re dead. But we are exhausted and this is not a sustainable source.
So, we went to the agency and we told them that. And the agency came back and said, “well, actually I think we’re going to do 150 families and we’re going to cap it at 20 hours a week.”
Miller: So more families eligible, but each individual family can only have 20 hours of family paid work, as opposed to 40, which you and other advocates had wanted.
Ross: Yes.
Miller: I’ve also seen though that some people who did get in, who were not waitlisted, the lucky few who got access to this – and this is from Kaylee Tornay’s reporting at InvestigateWest – that according to Oregon Department of Human Services data, a third of the families selected in that original lottery decided not to participate. What are reasons you’ve heard for that?
Ross: It’s all the 20 hours. Every reason I’ve heard, it’s the 20 hours. It’s not enough for them to let go of a day job that they might have. It’s not enough for them to support a child that they bring home from an institutional setting. It’s a mirage. It’s a tiny little bit of support that most parents can’t take advantage of.
Miller: How big is the waitlist right now, for those who actually do want to use this thing? We’ve heard that you think it’s not enough. But for families who do want it, how many are still waiting?
Ross: I think about 1,800 at this point.
Miller: Where is your family on that waitlist?
Ross: We are somewhere in the 60s to the 80s. I can’t remember exactly. We started out in the 80s, and the waitlist, it’s currently totally full. I think we’re in the 60s now. But given Tens’s needs, we don’t predict the program at this point will go into effect in his lifetime.
Miller: Can you describe what you’re pushing for right now, what you call Tensy’s Law?
Ross: Basically, we’re just asking the state to fulfill legislative intent. We believe that the legislators voted SB 91 – the previous bill back in 2023 – almost unanimously, minus one vote, that this should be for all children with the highest needs that Tens qualifies for. However, when it became implemented, many legislators were finding out [they] didn’t realize how limited it would be in practice. So Tensy’s Law comes in and says, this was your intent in 2023. Let’s fulfill that intent. Let’s actually provide these services that we promised these children. Let’s fulfill these entitled hours in any way possible, even if that means hiring a parent as a caregiver.
Miller: Do you have a sense for what this would cost?
Ross: It shouldn’t cost anything. And that is the frustration there because these are not new hours.
Miller: It shouldn’t cost more than what the state has already said parents are entitled to in terms of the care they should get. You’re not saying it’ll cost no money, but you’re saying the state has already said you’re entitled to 16 hours of care a day, and you’re saying there’s nobody we can find to pay to get that care?
Ross: Because I’m fulfilling those hours “for free.” It’s hard when you’re talking about parenting a child. I am not parenting this child. I am doing these cares that are way above and beyond his typical parent. There should not be a cost to this program because these hours exist. The state would pay anybody else to fulfill these hours. The reason that there is a cost is because parents are here and we’re available. We’re a workforce that’s here to be paid, and the state has been counting on that free labor.
Miller: What have you heard so far from lawmakers about this new bill?
Ross: We’ve heard a lot of positivity. There’s a lot of positivity out there, and we have a huge amount of organizational support through Oregon Nurses Association, SEIU and many other organizations. There’s a lot of support. But everybody is worried about Medicaid cuts. And everybody has a great cause that they are fighting for, and there’s a limited bucket. We’re all just trying to reach into it. With the current state of the federal government, it is terrifying.
Miller: Calli, thanks very much.
Ross: Thank you, sir. I hope you have a great rest of your day.
Miller: You too. Calli Ross is the legislative director of the group Advocates for Disability Supports. She was here with her 9-year-old son, Tensy.
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