You're listening to X ray FM on KXR. Why Portland at 91.1 and one Oh 7.1 in Portland and 91.7 fm and Nahalem Manzanita and Rockaway Beach, streaming everywhere online at x ray.fm. This is amplify women on X ray FM. I'm your host Shasta Kearns Moore. I've been a reporter in Oregon for 20 years and write a weekly newsletter for those raising disabled children at medical motherhood.com. In celebration of International Women's Day X ray FM is hosting 12 hours of programming amplifying women's voices and providing intersectional education on a diverse range of issues impacting women in Portland and beyond. Between now and 7pm, you will be hearing from some of Portland's most impactful community leaders, educators, activists, artists and professionals tell their stories to educate, empower, and inspire change. In this hour we'll be discussing paid parent caregiver legislation in Oregon. We'll hear from three mothers of disabled children who have been working to pass legislation that would give parents the Right to Work Medicaid in home caregiver jobs for their own children. This was allowed temporarily for some of Oregon's highest needs kids during the COVID-19 public health emergency. But that flexibility will expire may 11th. There are two bills in the Oregon Senate Human Services Committee that could create a permanent program for some or all children who have needs high enough to qualify for in home caregivers so that they can pay their parents. This is a pre recorded conversation, but you can email DJ at x ray.fm or text 971-220-5979 to share your thoughts. Welcome to Tina, Romy and Lisa. Tina, let's start with you. You have 17 years of experience and have gained deep medical expertise from your daughter's needs. Why do you think parents should be their own child's paid caregiver?
Thanks for talking to me today. Well, primarily, I think that the main reason is my daughter wants it, it's would be her choice to have me as her parent take care of her. I'm her playmate, I'm her mother at her home. And I'm, you know, she's the heart of the home and I'm the best qualified to care for her. I have 17 years of experience, like you said, trying to navigate her very complex seizure disorder. I know the nuances what what is a seizure versus what is just a silly laugh that some people might not notice, they might see her little laughter and think it's just a laugh. And actually, I know that that's gonna snowball into a seizure that could be life threatening. And it's just the years of experience that have taught me how to navigate that. Over the last three years of the pandemic, she has not been hospitalized not once, because a credit alive that too, not only the care that I give, but the fact that there aren't so many people coming in and out of our home, you know, exposing her to various illnesses. This is starkly contrasted to her being hospitalized, sometimes monthly, for the first 14 years or 15 years of her life. So those are the that's the main reason I wanted I it's my choice to, to take to care for her. I love caring for her want to be that for her. And I know how to play with her. And so it's just it helps make the house feel more like a home. So that's kind of the main things that I'm coming to.
What do you feel like, you know, this, this started in? I think it was February, January 2021. So it's been two years now. What sort of benefits have you and June and the rest of your family experience with this temporary program?
Well, first off, like I said, she's she's not been hospitalized. She's been able to, since she's been so stable over this last couple of years, she has been unable to start working on her eye gaze technology, which is the first step of real true communication. And she's really making strides with that, because she's stable because I'm able to work with her in the evenings and work with her in the mornings, you know, before she goes to school. So that it's been huge. It's great for my son also, who's, who gets to just function as a family without always having a nurse or a caregiver in the home, just to be able to be home, just us. And so that's been something that has been really wonderful. Hold for us. It's great.
Um, now your daughter is turning 18 soon. And in Oregon, parents of adults can be paid caregivers. So what do you feel like? I mean, how are you approaching that transition? And, you know, do you think it's fair to be paid only when she's older and not when she was younger? I'm kind of scared
of the transition. Honestly, there's so many things that are gonna change when she's 18. The one benefit is that we that I will be able to be paid. And I don't really understand the thought process behind that. She has always been a lot to care for. She's medically fragile, she's hospital level care at home. And it took a few years for me to kind of figure out all of the different her care needs. But she's actually getting easier as she gets older. So, no, it doesn't make sense to me that when she turns 18, and nothing really much will have changed between her being 17 and her being 18, that I will suddenly be able to be paid. And there's it's not a controversy. I don't I don't understand.
Yeah, those early years can be really tough. I'm wondering, too, you know, I think we've talked about this before, but has Jun ever had any negative experiences with paid caregivers?
She has. It's hard to talk about she, I think one of the worst things that happened we shed some actual abuse one of her nurses that we trusted to take care of her and they had been taking care of her for two years, we found out was not feeding her when he said he was feeding her and not giving her medications when he said he was giving her medications. We don't know if there's anything else that he did we know about those things. And we don't know how long that went on. Because obviously when we found out he was fired, but he did work here for two years. So so that was awful. Also to nurses, they were not trained properly on ventilator, which my daughter uses, made mistakes that nearly cost her her life. I came in to a situation where I thought my daughter was dead on two separate occasions. So while we need nurses, we really need to make sure that we have the choice as parents to really vet them and to and to feel good about them. We're still traumatized by those experiences. And so letting people into our home takes a lot of trust and and we need to be able to make those choices for our families.
Yeah, so have you been able to trust again and, and hire others?
We have two nurses now that that we trust well, and and a school nurse, but we have two night nurses that we trust. They've been here for for a long time. When new nurses comments, it is very nerve racking. And my daughter also took probably a year before she trusted people again. She was very afraid, you know, from what she'd been through. So it's been a work in progress. Yeah.
So it sounds like there. It's still a hybrid solution, even even during the last two years when you've been able to be paid.
Oh yes, we would not be able to keep my daughter home. She because she requires 24 hour care and pretty high level care. We have to have nurses in order to be able to keep her at home. But how we'd like to organize that in our home is is having night nurses and some day nursing for respite with most of the day care being done by myself. That's what works best for us.
Does she go to school?
She does go to school. She's going to high school. She has also a lovely school nurse that has been with her for five years now. That is a great companion to her. She they adore each other and going to school is a big adventure. So yes, she she's going to school and she just has a couple of years left.
So these temporary paid parent Caregiver Program in Oregon, these flexibilities were granted through Medicaid and have applied to states all over the country. Now, in the State of the Union address from President Biden he called out home and community based services, which is this program as needing more funding, and it looks like they're trying to resurrect the better care better jobs act back from the dead. Now I understand, Tina, that you've been talking with Senator Wyden Sophos. I'm wondering what they have to say about this idea of paper and caregivers.
Well Well, they've been supportive. They've they've been cheerleading us and the work that we've been doing to try to bring awareness to this. I would love to continue to talk to them more. I'd love for this to become, you know, a federal program. That's what we really need. So yeah, we'd love to continue that conversation with them.
That's great. All right. Well, for those just tuning in, my name is Shasta, Kearns Moore and I'm speaking with Tina Streisand, her mother of a medically fragile 17 year old. I'm also talking to Rami Ross, a behavior analyst and the mother of an autistic nine year old who also has Tourette syndrome. And Lisa ledson, a registered nurse and mother of twins, one of whom is autistic and has cerebral palsy. We've been discussing their efforts to pass paid parent caregiver legislation as part of X rays annual amplify women teach in, I'd like you to remember to join the conversation with any questions or comments for our guests by texting 971-220-5979 or sending an email to DJ at x ray.fm. Let's move on to Lisa. Lisa, you're an emergency room nurse and mother of twin girls with extra needs. Tell us why you think parents should be able to be their child's own parent caregiver.
Hmm. That is loaded Shasta very loaded question. My personal opinion is that each child is very unique and individual. And being an emergency department nurse for 16 years exclusively in the Portland metro area. So I'm Oregon born. I I've seen over the years how care has changed. But the one thing I believe that has stayed true is the love of the family, especially family caregivers, and how specific and personal they get when it comes to care and how not personal and specific I am as your ER nurse or the bedside nurse in whatever unit your kid ends up visiting in hospital. So I, I just think parents are, you know, I am a parent to just like, just like you said Shasta, I have twin girls, one of them is significantly disabled, she uses a wheelchair, she has a G tube to eat with. And she has lots of seizure disorders about five different styles of seizures. So technically, she has epilepsy. And as a parent, that parent hat and that nurse hat get merged. And and all I can think about is how tough that decision making processes and how specific it has to be when you're a parent of a medically fragile or a child with behavioral needs like mine, who has autism as well. And, and when I'm trying to make those decisions, I don't know how to teach those decision making processes to others. I don't, I don't know how to do that quite, quite frankly, it's very challenging. So when I've had to do it, you know, in the past and current day, I'm training a new parent support worker for us in the home. It's lended itself to be extremely challenging. There are just like you said, Tina, about June and her seizures, there are certain seizure styles that my daughter has that are I only know them. I don't even I could try to describe them like I do to the school staff, and it just doesn't work. They get missed. And that's very scary for me as a parent. So that would be my primary reason as to why there's just those things we know about our kids that that you can't teach. I think I think I'm gonna leave it at that. I have about 500 Other reasons. But we
thank you. You train. You're a pretty high level nurse. And so you've trained other nurses, right. Can you talk a little bit about how that compares to hiring and training in home workers?
Yeah, it's very different. Quite frankly, when you're a preceptor for a new graduate nurse or a nurse that's transitioned from a nother unit into the emergency department. There are probably two to six weeks of training that goes on. It's very protocolized you know, things in medicine are driven by protocols. I have a list a protocol of number one through 17 and we're going to go over all those things and you're going to highlight all the things you know to be true about that patient are the things that don't pertain to that patient and life goes on. That is not the case and I'm going to use that example in the home setting with my own daughter of Her seizure styles, I can't create a protocol for her five different seizure styles. I, it would take me an entire lifetime. And I would probably get it wrong. Because I don't know how to teach that critical thinking part of this seizure style, or is it that one? And does she need the one milligram of this or the two? I can't it the teaching of it is so challenging, as well, as I'm teaching the pool of people, the caregivers that were being sent from agencies, or that we're able to find are highly skilled, and I don't want to sound harsh, but they're mainly 18 year olds to 2122 23 year olds, who don't really know what they're getting into, and have no previous X education or experience with this. So I sort of feel like training in my home is just training a, you know, teenager, I mean, I feel like I have another kid, quite frankly, that's scary. To me. I expect high level of care for my children, all of my children. Yeah, it's very different.
Do you think that the there's anything that Oregon could do to improve the pool of labor force
100%, they, I think they should include parents as options. They, we are a large population of highly skilled, ready to hit the floor running workers who know our children, you would instantly have a pool of workers overnight, just like we already saw. As soon as they allowed in, in Oregon, we get.
Yeah. So I'm also curious about what you know, what nursing looks like these days, we're hearing a lot about shortages. And are those shortages affecting people in these in home settings? Or is it just that the hospitals that we're seeing that
yeah, it is absolutely affecting people in the in home setting anything from hospice care, home care, to the radiology tech to the surgery technician, to the person answering the phone when you enter the hospital staffing across the entire board in the medical world is short. And that is to me extremely scary. And I would like to see in Oregon, but also nationwide, US trend in a direction of bolstering in home care, and our community settings. I don't want to have to use a hospital. If I don't need to, there's things that we know we can do at home. we trialed this through the pandemic, this, you know, paid parents program, it works like we've already proven it. Yeah, that works.
So when the well, so we've heard some news stories about you know, pediatric mental health patients who get stuck living in hospitals. Is that due to a shortage of home care? Or is that something that's deeper going on with the health system?
Yeah, it's a mental health care crisis, along with the list of people, you know, the staff titles that I listed before, as being short staffed, mental health care staff at large in our state and nationwide is completely depleted. And that I mean, I personally know of a child who was in an emergency department for five months, five consecutive months, an under 12 year old child was stuck in an ER, waiting for placement. And that, you know, we, we, we have an ability to support families in their homes and prevent a five month need for an ER stay for a placement and we people want it to sound like it's outside the box, but it's not. It's completely doable with the right resources. And I think this paid Parent Program is the start. That's the catalyst for this. Do you feel like that
that specific child like needed the the paid parent option, or is it more of a systemic?
I mean, it's a little bit of both, but I do 100% wonder, and and I'm leaning in the wonder of, I am almost certain that if this family had a paid Parent Program early on, and I mean, I'm in the camp of as soon as we know that two year old has XY and Z support needs Let's start fueling families with ample supports to know that the trajectory is not going to land them in a five month er, holding cell. Right, that that just makes sense to me. It but it sounds so logical I don't, I don't know why we can't just move forward and do it I, I'm sort of at a loss, quite frankly.
So on May 11, the temporary program will end it's connected to the COVID-19 public health emergency. So when this goes away, what do you think will happen to all these families that are about 440? Who are utilizing it right now?
Yeah, I think it's going to take no less than six months. And we're going to find house lessness. And the need for services that are not going to be available. And we, we have had access financially over the last two years by being a paid support worker to find resources and have the money to do it. And that's going to go away. And we're no longer going to be able to fund our own resources. But the resources won't exist either. I fully anticipate that I'm going to only give it till summer. I bet you by July 4, I'm going to be checking in pediatric patients into the emergency department in massive numbers, and we're going to need to place them in places that we don't have access to.
So are you are you a paid parent caregiver right now? I am. So I think there would be some people out there wondering, you know, why would you take a $20 an hour job over your $60 An hour job as a nurse in a hospital? Why not just go to work and do it that way?
Yeah, I I used to be bitter about that. But now after the offering, and the start of what occurred during the pandemic, I What happened is, is I realized, it only took like two months for me to realize for my own daughter, that the benefits versus the negative outcomes of me being home with my daughter, and not to being home with my daughter was that she actually stayed on a schedule, feeding wise. And medication wise, that was profoundly improving her health. I didn't have to involve anyone else. So it allowed her father and I to you know, one other caregiver to really cater to her need. And she was the healthiest I've ever seen her as well as we were able to spend time teaching her how to talk and she learned to talk. And so that is you that's worth that's priceless. It's worth no amount of wage. That is what she, you know, shined through was that I have this opportunity to not be without food, I can still buy food and put food on the table as a contributing member of my family, financially. But I can give 100% to my child. And she flourished. And I didn't realize that was an option. I was always forced to be at work. I you know, I just didn't know until I was given the opportunity. And I don't think that I think that's probably what's happened for a lot of us and and how do you go back from them? How do you you know, how do you turn around and go back to going back being at work 40 hours a week, right? It sounds not not beneficial for the kid. Thank you.
Thank you for sharing your experience. For those just tuning in. My name is Shasta Kearns Moore and I'm speaking with three mothers of disabled children who have experienced Oregon's temporary COVID era program that allowed parents to work the in home caregiver hours that Oregon offers to disabled children. We've been discussing why they want a permanent program to pass in this legislative session. And we're talking as part of X rays annual amplify women teach in. We're going to talk now with Rami Ross. You're the mother of a nine year old with high behavioral needs and you're a certified behavioral analyst. We've heard a lot about medical needs in the first half from Tina stray center and Lisa ledson. But what about children with behavioral needs? Why do you think parents should be their own child's paid caregiver when the needs are behavioral rather than medical?
Thank you. Thank you, Shasta, um, the support for kids with high behavior support needs really does differ. There are some overlaps. Of course there is ADL supports, there's medic medical medication supports. But for behavior kids, we're often predominantly talking about behavior management, which can be anything from really carefully controlling the environment setting every every nuance, every detail up for success, to responding to problems that arise responding to behavior, like physical aggression, or self injury, or other dangerous behaviors like that. And excuse me, responding to these types of behaviors can mean using really elaborate protocols designed by the child's therapist and support team, and kit include physical interventions, often they do include physical interventions. And then on the extreme end of that, that can include restraints. So when we're talking about the child's welfare, of course, we want the people who are going to be using these types of interventions, we want them to be the people who have the most training, who can show up with the most love and the most connection. And really importantly, it the person with whom the child feels the most safe. Because these are potentially traumatizing situations for everybody involved. There needs to be that safe connection there. You know, it's not easy, staying calm and nurturing when somebody is trying to hurt you. We humans have instincts, and they kick in when we're being attacked. And, you know, I work with a lot of DSPs professionally, in care homes, and you know, the most loving people and the most hardworking people. But there is an instinct that kicks in. And it is hard to overcome that. And it takes a long time to overcome that and to be safe. And I think that there's a connection there with parents that bypasses that, that allows you to do that, in addition to all the training that we get from, you know, the neurologists, the psychologists, the OT, the speech, the behavior therapist, all of it. Yeah,
thank you. So I understand that you're also a paid parent caregiver right now during the temporary program. I am. And so did you have any trouble getting on to the program,
I had a lot of trouble getting onto the program. I, like many other parents had a hard time and encountered barriers that really don't need to be there that shouldn't be there that aren't acknowledged for being there. You know, my son didn't initially qualify for the current program. And to explain it that for the current program to qualify, the kids need to have been allotted 240 or more hours of attendant care per month. And that's based on the assessment that determines what level of support they need. My son was initially allotted 159. I shared this with other families and other other moms. And I was encouraged to go back and actually look at the assessment and read it and see if there were any errors or omissions. I was not encouraged to do this by the service coordinators, I wasn't even really given a copy by the service coordinators. So I need to ask for a copy. We got it went over it. And boy howdy. Um, there were errors and omissions all over the place. So, um, we had meeting after meeting after meeting with case management, with doctors with various providers. His diagnoses weren't sufficient for getting the support, which which baffles me because these are medical diagnoses. We had to provide a level of documentation and proof that was degrading truly. I don't want to go too far into detail. But these were situations where the diagnosis itself should have been sufficient because the diagnosis means that it's happening, and that wasn't sufficient. So we went through this process. In the end after three months of back and forth, it was it was a full time job by that point. His hours were increased from 159 hours, same kid to two 168 hours. So we did all that work and then he qualified. But this isn't something that most families can do. You know, I am a parent who speaks English. I am a seasoned behavior analyst. I've been working in this field for 25 years I've experienced with these systems. But what about families with single parents parents working two jobs, immigrants, ESL families, families who this is a huge part families who don't yet know how to talk about the most painful and frightening details to strangers, and other marginalized families who are afraid to share rightfully afraid to share some of the most intimate details with service coordinators, they don't know. So how are they getting services, it's frightening to me, what might be happening in those meetings, what their assessments look like. And I've had the opportunity to help out a handful of other families, since I went through my process, help them review their assessment, sit in on reassessments. And really, the experience has been completely consistent. The assessments really aren't capturing their needs. It looks I don't want to say this, because the sounds it sounds horrible. And I don't think it's the case, but it looks willful. It is. It is so profoundly misguided. No way, it's time that you think have they ever met a disabled person, or who wrote this. So it's just really troubling to me, and I want to help every family I can get the support that they need, or that they're entitled to, and to really have the extent of their disabilities captured to be seen and witnessed if nothing else acknowledged.