January 30, 2025 • 32 mins
Calli Ross returns to the show to discuss a bill currently making it's way through the Oregon state legislature. Named for her son, Tensy's law will make good on the legislative intent behind OR SB91 passed in 2023. SB91 created a waiver for children with very high disability related support needs to pay their parents as direct support professional (DSP) providers under Medicaid Home and Community Based Services. However, SB91 also created a lengthy waitlist, with only about 10% of otherwise eligible children having access to parent paid caregiving. Tensy's law will ensure that all eligible children can receive supports by paying their parents as caregivers.
There will be a hearing about Tensy's law at the Oregon state capitol on Feb 4, 2025 which happens to be Tensy's birthday!
Find information about the Feb 4th 2025 hearing here: https://www.facebook.com/share/1Eqk88uixr/
follow Advocates for Disabiliy Supports here: https://www.facebook.com/ADSOregon
testimony for SB91, why parent paid caregiving is important(starting at about 1:20 into the video): https://olis.oregonlegislature.gov/liz/mediaplayer/?clientID=4879615486&eventID=2023021052
Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.
There will be a hearing about Tensy's law at the Oregon state capitol on Feb 4, 2025 which happens to be Tensy's birthday!
Find information about the Feb 4th 2025 hearing here: https://www.facebook.com/share/1Eqk88uixr/
follow Advocates for Disabiliy Supports here: https://www.facebook.com/ADSOregon
testimony for SB91, why parent paid caregiving is important(starting at about 1:20 into the video): https://olis.oregonlegislature.gov/liz/mediaplayer/?clientID=4879615486&eventID=2023021052
Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
[music]
(00:11):
Welcome to Love Doesn't Pay the Bills. I'm Lisa Chuty. I am a family caregiver.
I am so excited to welcome this guest back for the third time now.
Kali Ross is an incredible advocate and caregiver to her son. As legislative director for advocates for disability supports,
Kali worked very hard for the implementation of Oregon Senate Bill 91 in 2023.
(00:36):
Senate Bill 91 allowed for some parents to be paid as direct support professionals for meeting their children's extraordinary care needs.
However, Senate Bill 91 created a lottery and wait list where only 10% of otherwise eligible children with very high support needs are actually able to pay their parents.
This legislative session, Kali has worked with lawmakers to create ten Z's law named for her son, which will allow all eligible children to hire their parents as direct support professionals.
(01:06):
Welcome, Kali.
I think you lose as nice to be here again. I forgot to send you a certain time.
If you would like to fill us in on some of the things that have happened since then, people can go back and I highly encourage them to go back and hear those previous appearances.
Yeah, so Senate Bill 91, like you said, was passed and it went to the agency ODDS for rulemaking in which we, the C and whoever, the children's extraordinary needs waiver,
(01:40):
it allowed for about six million per biennium with a federal match.
So about 12 million per biennium and that is only enough to cover 155 families whose children are able to choose their parent is caregiver for 20 hours a week.
About a third of families declined services because the 20 hours was insufficient for them to support a child outside of an institution or it was insufficient for them to be able to
(02:07):
with a current job to be able to be at home with their child as their caregiver.
Right.
So with the roll out of everything, just not going as we had hoped we ended up putting forth tens of these law through Senator Patterson's office.
We have rep near on as our chief co sponsor in the house. They have both been incredible advocates for our community and we are so grateful for them.
(02:31):
But tens of these law basically just ask that the legislative intent of Senate Bill 91 be followed.
We've also put in a few copy-ops there so that there can be a reduced fiscal before it goes to the ways it means the budgetary committee, which it will go to before passing to the house and to the Senate for votes.
(02:52):
Okay.
By reduced fiscal, what do you mean by that exactly?
So our biggest concern right now is once it's out of committee because this bill has a cost to it because they are not counting these hours as regular caregiver hours.
They're not saying you know these hours of this to our families. They have not been fulfilled.
(03:13):
Parents are now allowed to fulfill them. That's not what the state is saying instead the state is saying it's since these parents have been working these hours for free for so long.
So as the house parents come in and actually work these hours it's going to cost us a whole bunch of money so it will go to a ways it means the budgetary committee where it will be decided if it passes out of there or if it's going to be too expensive for the state and.
(03:38):
That that's what we mean we we are trying to reduce the fiscal on this bill as much as possible and we can do that by allowing for 40 hour cat.
Instead of the 20 hour cat we can allow a parent wage instead of a like a parent wage to the provider agency so the provider agency would be paid less power currently they're paid 42 50 by the state around that.
(04:06):
And instead we do that would be to be yes on how much they would be paid the parent would still be paid the same but because there isn't the overhead for the agency that there is a finding a DSP finding clients training and all that you know it would be less it would be reduced overhead so they shouldn't be paid is not for the agency shouldn't be paid is not looking in terms of their.
(04:29):
So we paid the same rate to clarify that a bit repeat the amount you said that the agencies are getting.
Curumates say it's like 42 47 but it's close to 42 something in that ballpark okay and per hour for every hour DSP works right support worker right and each hour that the DSP works is not necessarily more work for the agency.
(04:56):
But it is build that way to to put that in context the typical DSP wages that I've seen in Oregon.
Very according to the agency between 22 ish to 30.
Some have better benefits than others and there is some discretion on the part of the agencies is to what we just they actually offer so I'm guessing you mean that will be the same for parents as well and that the agencies would would have some discretion.
(05:32):
Yes so instead if I worked you know an hour in my child's caregiver and said of the agency receiving 42 50 an hour for that or maybe they received $38.
Sure but they had to do this work there's no need for them to do any recruitment of any new DSP other than yourself there's no need for them to.
(05:55):
Do large pieces of what they ordinarily would do.
Exactly so we are bringing them both the worker and the client we are coming in ready and able to work for our children so it's it's just it's a reduction of overhead and this is only for the minor population this is not for the adult population.
You know when we're looking at this bill there are our caps on how much a parent can work for their minor child so there wouldn't be overtime included there wouldn't be those extra expenses to the agency so we think that this is a fair.
(06:28):
Opportunity for parents to be able to put more parent more children onto this program without overdoing the budget too much but these are just amendments that we are introducing and then legislators will still have to vote on them and vote on tens these law in general.
So these are just caveats that we're adding to reduce the cost to hopefully push tens is law through the budgetary committee so that it can be voted into law.
(06:53):
Yeah I keep coming back again and again to how are we even talking about cost here because these are positions that are already.
Available to hire any other person besides the parent so what would the state do if we used all the hours with non family caregivers.
Like or even with family care is as long as they aren't the legal or your spot right individual around my and.
(07:19):
Yeah they would pay them so.
What is that money come from experience I'm currently a DSP my son was not part of the lottery I have a friend who's child also qualifies for services who lives close by so I go to her house at five nights a week she comes to my house five nights a week and.
(07:40):
You know I don't know her child like I know my child I am not trained on her child like I know mine I don't know every you know second I'm trying to be very careful not to like break any hip of things but I don't know the caregiving duties that I am supposed to.
Perform like I do on tensy I don't have that natural instinct with her child so she's not getting the most you know the best qualified worker for her son that is that is her and I am in the same boat I am not getting the best most qualified DSP for my son.
(08:17):
And that her house yeah yeah it's ridiculous that she can work for me and I can work for her but we can't work for our own children yeah I'm in complete agreement I'm baffled why this is a financial issue when the dollars are in the positions are exist and in fact you are laying out ways that parents can still be cheaper than non parents in these positions which.
(08:46):
And that's not to mention reduced hospitalization reduced out of family placement a penance on yes reduced dependency on government assistance is just there are so many silos that we can take from and say this is going to cut costs but.
Because it's we've been doing this free labor for so long and because we are parents and we love our children will continue doing this free labor the state does doesn't want to pay us is an additional cost because that labor will be paid labor now yeah.
(09:20):
And you mentioned you know you're talking about being the best caregiver knowing your son best which is I believe absolutely true and there was a really dramatic example of that in a hearing recently do you want to talk about that yeah I mean I keep hearing it was very dramatic but for me it was a day in my life it's fairly common occurrence for us but tens is.
(09:43):
And it's a strike dependent which means he has a tracheostomy tube it's a medical device that's in his trachea that allows him to breathe he has had surgery that prevents any kind of airway in his upper airway he has no smell or ability like breathe through his nose or mouth whatsoever his airway ends at his trache.
He had lost a tooth earlier that day and had lots of extra secretions secretions equal mucus mucus bug that could stick he and viscous and it plugged up his the whole for his airway and so in the middle committee he stopped breathing he started to turn blue real quick realize what was happening got him on the ground didn't emergency trache change in which we actually remove.
(10:27):
The trache from his tracheostomy stoma and.
Reinsert a new one so that he can continue to breathe and tens is particularly fun because his he doesn't breathe off of the ventilator he needs his ventilator to put pressure into his lungs for his lungs to open and close he's unable to do that himself as long as they're too hard so.
(10:51):
All that time that the trache wasn't in this time that he's not breathing so this has to happen really fast and of course it was during a health care committee with health care work you know talking about the health care workforce and sitting there my yellow pay parent caregiver shirt saying you know we're workforce we are ready to enable and my son has the crisis.
And that's just what I do is you know exactly how to do it except and you know what that it is it is an extraordinary job that you're doing most people would not know how to do this and a lot of people would be very frightened of a situation like that well we made a little scene yes.
(11:31):
We did hear some people but again it's it's his life it's it's a life it is we he has seizures that stop in breathing and require him to be manually ventilated with a bag.
He has blood sugar drops where he's all the sudden bluish and we can't figure out why until we test this blood sugar and he's in the 30s he he didn't he's non verbal and non ambulatory so there's no way that he can say something's happening to me right now I need help you have to just know him you have to know is this a seizure is this blood sugar issue is this a trade plug and without that knowledge without that.
(12:16):
Absolutely if cared that only my husband I have with him you're just not going to you're just not going to know and you know specifically exactly what those presentations look like with your son with tenzy and you know exactly how to recognize that much more quickly than other people would.
And are are the non family caregivers that you have had nurses are they all trained as nurses.
(12:46):
We have I mean we have my my friend who's yeah she she's had her own.
With significant medical needs and then we do have you know family members that we've had as caregivers as well we don't have.
Outside sources none of our none of our caregivers even our nurse is ever alone with him I am always there or my husband is always there he.
(13:10):
He requires that kind of care and there's just there isn't anybody else that can take that play.
Whether we're paid or not we are always with them right and that means opportunity cost for you that means.
You know you still have a need to provide tenzy and your whole family with a house and food and all the things.
(13:34):
So how's that happening like how how how how our family is dealing with that.
It's it's not you know I don't know if it's not so family we couldn't we are we weren't floating we weren't able to it wasn't sustainable for us and that's why I have to go.
You know spend so much time over at the other house.
I just we financially could not afford it in this economy to be with one with one income.
(14:01):
Yeah and my husband works.
Days often eight eight and then I work nights so we just switch off and I just maybe.
Two to three hours a day on a good day and that's something I have been doing for years prior to this when I was my son's paid caregiver.
During pandemic I stayed up nights with him and even before that when I was an unpaid caregiver I stayed up with nights with him because there just isn't anybody else that's there and capable and willing to do that.
(14:32):
I really want people to hear that because you know to me I spent about the first 10 years of my daughter's life.
Sleep deprived but not to that extent I I was always watchful for seizures because she doesn't have epilepsy and they would tend to happen at night and sometimes there was an actual.
(15:00):
Event that that necessitated her response and so.
I having had that experience I really really value and understand the importance of sleep and.
I'm in all how you're here talking to us because.
(15:25):
I don't always come out well but it comes out.
Because sleep loss I mean it's a it's a technique that's used for torture people it's a you know it's a medical necessity for people to have sleep.
But the alternative is my son wouldn't be here so I'd much rather be sleep deprived and have my little boy and.
(15:51):
And the opposite and like you know like many many parents I'm willing to go to whatever.
Whatever and I need to to make sure that he is provided for all three of my children are provided for and that means being away from my home five nights a week.
And it also means that my husband is often awake a lot at night as well and then goes to work 12 hours a day because our.
(16:17):
Night caregiver just doesn't have the expertise on tends to handle it all alone.
Yeah.
And you know that that goes to speak to to developing better choices and that we do need the robust workforce of other people to come in as well.
(16:42):
And share that caregiving with us.
Absolutely. We always had outside caregivers if we can if we could find them. Yeah and I think that's something legislators don't seem to understand sometimes or the general public some people I've talked to you don't seem to understand.
You know 24 seven is 4.2 jobs so.
(17:08):
And how if you have even if you didn't need to earn money somewhere else if you have two people working those 4.2 jobs it's already exhausting throw in another job for pay.
And it's really untenable and an amazing that anybody is managing to do it for any significant time.
(17:32):
Not sure if anybody is I really don't I you are family struggling constantly I am not though I mean I'm really I I put on a good face but this is not sustainable.
I know this is not sustainable. My husband I are concerned about both of our health. I've had back surgery already and I'm looking at back surgery again in the future because of you know the lifting and the transferring of tens that I do constantly.
(17:59):
You know for the longest time we didn't have a wheelchair handicap accessible vehicle because it wasn't affordable to us.
We say had to save up six years to be able to afford a handicap and that was with extreme cuts to our budget to be able to afford the vehicle we have is common before that I was having to lift this 90 pound wheelchair yeah.
(18:24):
And that's another piece of it to is that you know if you had income I'm sure a lot of it would be going to those extra expenses that you already have as well.
I think it's so important that we can say that this incentive to you know this idea of paying parents for their labor it actually gets the children out of their home and into their community you know we say I use home and community based services.
(18:51):
Yes this keeps children in their home but more importantly it gets them out into their community you've got people that know the kids the best are a comfortable traveling with them you've been given the financial freedom and when I say financial freedom I mean this very you know 22 hours an hour you're not you're not rolling in money but you're given financial freedom to at least you know.
Take your child out to a target and perhaps buy them a toy and wander the aisles without hoping you know your credit card was going to decline for getting gas on the way so it's it's these these supports that are so needed by all of our families.
(19:30):
You'll be able to keep our children at home and to keep them out in the communities and one of the main things parents we parents are going to do with our income is pay the house that the child is living in that's a main I mean a thing right there even if you don't talk about extraordinary or fun things like going together.
You know like that's an exciting outing for us. I get it we can afford and and you know my my husband and I were dependent on his income when income it was long enough ago it was a little more doable and we experienced a time where he was laid off with no notice and we had zero income for four people.
(20:16):
And and that was terrifying and I wouldn't want anyone else to go through that and if we had income from caregiving.
We might not have moved out of state for him to go take another job which was not people for my daughter for all of us and disrupted a lot of things that she had going on prior to that everything from school to.
(20:43):
So doctors to people that we knew in the neighborhood and and said hello to when we passed Montstreet you know and I'm going to realize how important that is that community for our families for children yeah.
And actually the circle of doctors to switch specialties switch you know every all the I couldn't even it's exhausting one retirees I can't even imagine switching all that yeah.
(21:11):
And and we didn't have so many as tens he does but it was it was a lot and and it disrupted my child's life and had a negative impact on her.
And we were instead of keeping a stable in a home that we could stay in and continue to provide for her.
(21:32):
Yeah that's we hear it again again that these families are desperate that you know it's it's a real close call between.
And I brought my child off at the emergency room or can I pay this month's rent. And that's really where families are left those are the choices that the state is putting on our families.
(21:55):
We're going to take a break now please stay right here and we'll be right back.
Thank you for sticking around we continue our conversation.
There are there are you know we heard some extraordinary stories in the testimony for Senate bill 91 and I would strongly recommend everyone listen to that testimony because I think it's really powerful as to why this pay for parents is important and one piece of the puzzle you know we've touched on the need to expand expand the non family workforce as well but really we do know our children best our children often choose us
(22:36):
to their reasons sometimes when it's not safe to have outside caregivers and and there's a work for shortage so sometimes they can't be found so.
Exactly asking for you know the ability to work all of our children's hours I know most parents actually do want outside supports to come up we're not asking I don't want to work.
(23:02):
554 hours a month for my son will be you know I strive to see how many hours I can get filled by outside hope so that I do have that.
Respect but that the help just isn't there so if the helps not there I can't go to work I can't.
Get out and do things without.
(23:26):
You know somebody somebody else helping so yeah until that exists until that workforce is fully trained fully staffed.
And even then you know you you still won't know them as well as parents will yeah I keep coming back to the the n scene in Lord of the rings and and Sam says to photo I can't carry the ring but I can carry you you know and it's if the state can't provide all of the direct care that our children need.
(23:55):
Then which sometimes it can't.
Then it can do things to wrap around us as a pair and a family such as pay and it can we're giving them the way to do this we're saying this is how you do it and they're saying yes we're happy to do that we're happy to have you parents doing this we just don't want to pay you for this and they call it natural supports and these are not natural supports these are hours that are deemed.
(24:22):
And this is very by the state that go above and beyond the typical you know the typical needs of their peers and when these when these is frustrating when say.
When the service hours are calculated they're they're extremely carefully calculated to discount.
What would be typical parenting expectations and to only provide for exactly extraordinary needs due to a medical condition or disability and you know changing a trick is not something apparent usually the committee hearing floor yeah expects to have to do when they have a baby that's not part of ordinary.
(25:04):
Yeah parenting expectations so I agree and neither is you know helping on the toilet for a teenager neither is.
Feeding for a number of things J to sure you know venting the tubing and just I there's a million things I do all day.
(25:25):
I'm adjusting oxygen I am checking for blood sugars I am watching for seizures I am often treating seizures I am helping him get in and out of places I am doing.
You know hygiene cares every single thing that needs done my son depends on me to do those things and he doesn't want a bunch of outside people coming in to do these personal cares he doesn't want a bunch of people he doesn't know and he doesn't trust.
(25:52):
Taking away his autonomy you know yeah I know what he wants and I am willing to help him achieve what he wants not everybody can say oh that must mean that he hasn't itch on his right cheek but I will I will know that so you know just see a little thing that he is so dependent and is really hard to.
(26:18):
Watch him with anybody else because they are they just don't know enough to meet his needs yeah so even even our best caregivers.
Out looking for better jobs that pay more money and it you know move them up in the field and home health is not that situation so even the very best of them we don't usually have long enough for them to truly get to know to get to know tensy yeah that's another aspect of this really.
(26:44):
Caregiving it's so personal and it really does matter that you're getting to know each other really well completely and mentally as a as a mom and child or any caregiving bear and you do have.
You know that inside out knowledge at a second to understand what a little facial expression means or what.
(27:12):
Happened yesterday to the child that they're not contextualizing when they're talking about something or.
You have a certain knowledge that does really that continuity care coming up there is a hearing on February 4th.
About tens birthday yes that's so exciting that's such a cool birthday present.
(27:36):
It's a really cool and yeah it's our first hearing committee and.
It's a health committee and they are going to be just focused on tensy's loss and it will 538 it's the only thing they're doing that day in that committee and we're taking it over.
We hope that any listeners of yours would like to join us at the capital wearing their yellow we're going to sit in the committee hearing and just supply testimony and show legislators what.
(28:06):
Real people that need real supports look like and I think that's that's the importance of having tensy's name on this spill those legislators know him at the time a day they can look at tensy and say this is a real person and this real person.
These real supports he is not getting those right now.
(28:27):
Yeah that is why we bring up you know why he's he's brought into this conversation so much and why then build named after and it's he's the face of.
So many so many children are not able to get to the capital that are not able to advocate.
At the level that we've been able to we've been privileged to.
(28:50):
And I and it and I appreciate it is a huge service that you've done as well to to step into that role and and run with it when you could.
And it is doing a lot of families a lot of good is what will do for kids for for all of our kids you know across the state.
I not alone on this I could never do this without the team behind me we have an ad hoc group of incredibly dedicated parents and.
(29:20):
Children that they they all you know support and it's just it's amazing to watch this team and what what we have all accomplished fabulous.
I plan to be at the hearing with my daughter I will put links in the show notes for further information about that.
And we are looking for passage of this bill because I think it's so needed and so.
(29:48):
Just the right thing to do and over do and it's it's just clearly the right thing to do for the children.
And the state financially for the parents it's the right thing to do all the way around.
It's ethics at this point is moral and ethical issue and if we want to keep children in the homes and get them out of their into their communities.
(30:15):
The only way to do that is support families and the best way to do that is to pay parents for the labor that they are all the day providing.
And the fact that the community you want to make sure the child remains within the base of that is the family.
So if you want a child in community it's exactly it has to start with their family.
(30:40):
There's just no other way around it.
Absolutely. I mean last night we're playing sorry with Tenzie and he's got a little switch adapted dice roll and I was just seeing they're watching you know my three kids and my husband and I were sitting around the table playing sorry and it's just.
I'm trying to give me a sense of completeness.
It's a sense of completeness it's this is where this is who we are this is where we belong.
(31:02):
This is the childhood I want my children to have.
That's awesome.
Yeah simple but it's what I'm asking all I want is my family.
Yeah.
That's all right.
Being here and kept together.
Yeah.
Well thank you so much our time has come by and I really appreciate it.
(31:24):
This is love doesn't pay the bills. I'm Lisa Chuty.
If you appreciate the podcast please tell a friend and we will see you next week.
Thank you Lisa.
[Music]
[music]
(00:11):
Welcome to Love Doesn't Pay the Bills. I'm Lisa Chuty. I am a family caregiver.
I am so excited to welcome this guest back for the third time now.
Kali Ross is an incredible advocate and caregiver to her son. As legislative director for advocates for disability supports,
Kali worked very hard for the implementation of Oregon Senate Bill 91 in 2023.
(00:36):
Senate Bill 91 allowed for some parents to be paid as direct support professionals for meeting their children's extraordinary care needs.
However, Senate Bill 91 created a lottery and wait list where only 10% of otherwise eligible children with very high support needs are actually able to pay their parents.
This legislative session, Kali has worked with lawmakers to create ten Z's law named for her son, which will allow all eligible children to hire their parents as direct support professionals.
(01:06):
Welcome, Kali.
I think you lose as nice to be here again. I forgot to send you a certain time.
If you would like to fill us in on some of the things that have happened since then, people can go back and I highly encourage them to go back and hear those previous appearances.
Yeah, so Senate Bill 91, like you said, was passed and it went to the agency ODDS for rulemaking in which we, the C and whoever, the children's extraordinary needs waiver,
(01:40):
it allowed for about six million per biennium with a federal match.
So about 12 million per biennium and that is only enough to cover 155 families whose children are able to choose their parent is caregiver for 20 hours a week.
About a third of families declined services because the 20 hours was insufficient for them to support a child outside of an institution or it was insufficient for them to be able to
(02:07):
with a current job to be able to be at home with their child as their caregiver.
Right.
So with the roll out of everything, just not going as we had hoped we ended up putting forth tens of these law through Senator Patterson's office.
We have rep near on as our chief co sponsor in the house. They have both been incredible advocates for our community and we are so grateful for them.
(02:31):
But tens of these law basically just ask that the legislative intent of Senate Bill 91 be followed.
We've also put in a few copy-ops there so that there can be a reduced fiscal before it goes to the ways it means the budgetary committee, which it will go to before passing to the house and to the Senate for votes.
(02:52):
Okay.
By reduced fiscal, what do you mean by that exactly?
So our biggest concern right now is once it's out of committee because this bill has a cost to it because they are not counting these hours as regular caregiver hours.
They're not saying you know these hours of this to our families. They have not been fulfilled.
(03:13):
Parents are now allowed to fulfill them. That's not what the state is saying instead the state is saying it's since these parents have been working these hours for free for so long.
So as the house parents come in and actually work these hours it's going to cost us a whole bunch of money so it will go to a ways it means the budgetary committee where it will be decided if it passes out of there or if it's going to be too expensive for the state and.
(03:38):
That that's what we mean we we are trying to reduce the fiscal on this bill as much as possible and we can do that by allowing for 40 hour cat.
Instead of the 20 hour cat we can allow a parent wage instead of a like a parent wage to the provider agency so the provider agency would be paid less power currently they're paid 42 50 by the state around that.
(04:06):
And instead we do that would be to be yes on how much they would be paid the parent would still be paid the same but because there isn't the overhead for the agency that there is a finding a DSP finding clients training and all that you know it would be less it would be reduced overhead so they shouldn't be paid is not for the agency shouldn't be paid is not looking in terms of their.
(04:29):
So we paid the same rate to clarify that a bit repeat the amount you said that the agencies are getting.
Curumates say it's like 42 47 but it's close to 42 something in that ballpark okay and per hour for every hour DSP works right support worker right and each hour that the DSP works is not necessarily more work for the agency.
(04:56):
But it is build that way to to put that in context the typical DSP wages that I've seen in Oregon.
Very according to the agency between 22 ish to 30.
Some have better benefits than others and there is some discretion on the part of the agencies is to what we just they actually offer so I'm guessing you mean that will be the same for parents as well and that the agencies would would have some discretion.
(05:32):
Yes so instead if I worked you know an hour in my child's caregiver and said of the agency receiving 42 50 an hour for that or maybe they received $38.
Sure but they had to do this work there's no need for them to do any recruitment of any new DSP other than yourself there's no need for them to.
(05:55):
Do large pieces of what they ordinarily would do.
Exactly so we are bringing them both the worker and the client we are coming in ready and able to work for our children so it's it's just it's a reduction of overhead and this is only for the minor population this is not for the adult population.
You know when we're looking at this bill there are our caps on how much a parent can work for their minor child so there wouldn't be overtime included there wouldn't be those extra expenses to the agency so we think that this is a fair.
(06:28):
Opportunity for parents to be able to put more parent more children onto this program without overdoing the budget too much but these are just amendments that we are introducing and then legislators will still have to vote on them and vote on tens these law in general.
So these are just caveats that we're adding to reduce the cost to hopefully push tens is law through the budgetary committee so that it can be voted into law.
(06:53):
Yeah I keep coming back again and again to how are we even talking about cost here because these are positions that are already.
Available to hire any other person besides the parent so what would the state do if we used all the hours with non family caregivers.
Like or even with family care is as long as they aren't the legal or your spot right individual around my and.
(07:19):
Yeah they would pay them so.
What is that money come from experience I'm currently a DSP my son was not part of the lottery I have a friend who's child also qualifies for services who lives close by so I go to her house at five nights a week she comes to my house five nights a week and.
(07:40):
You know I don't know her child like I know my child I am not trained on her child like I know mine I don't know every you know second I'm trying to be very careful not to like break any hip of things but I don't know the caregiving duties that I am supposed to.
Perform like I do on tensy I don't have that natural instinct with her child so she's not getting the most you know the best qualified worker for her son that is that is her and I am in the same boat I am not getting the best most qualified DSP for my son.
(08:17):
And that her house yeah yeah it's ridiculous that she can work for me and I can work for her but we can't work for our own children yeah I'm in complete agreement I'm baffled why this is a financial issue when the dollars are in the positions are exist and in fact you are laying out ways that parents can still be cheaper than non parents in these positions which.
(08:46):
And that's not to mention reduced hospitalization reduced out of family placement a penance on yes reduced dependency on government assistance is just there are so many silos that we can take from and say this is going to cut costs but.
Because it's we've been doing this free labor for so long and because we are parents and we love our children will continue doing this free labor the state does doesn't want to pay us is an additional cost because that labor will be paid labor now yeah.
(09:20):
And you mentioned you know you're talking about being the best caregiver knowing your son best which is I believe absolutely true and there was a really dramatic example of that in a hearing recently do you want to talk about that yeah I mean I keep hearing it was very dramatic but for me it was a day in my life it's fairly common occurrence for us but tens is.
(09:43):
And it's a strike dependent which means he has a tracheostomy tube it's a medical device that's in his trachea that allows him to breathe he has had surgery that prevents any kind of airway in his upper airway he has no smell or ability like breathe through his nose or mouth whatsoever his airway ends at his trache.
He had lost a tooth earlier that day and had lots of extra secretions secretions equal mucus mucus bug that could stick he and viscous and it plugged up his the whole for his airway and so in the middle committee he stopped breathing he started to turn blue real quick realize what was happening got him on the ground didn't emergency trache change in which we actually remove.
(10:27):
The trache from his tracheostomy stoma and.
Reinsert a new one so that he can continue to breathe and tens is particularly fun because his he doesn't breathe off of the ventilator he needs his ventilator to put pressure into his lungs for his lungs to open and close he's unable to do that himself as long as they're too hard so.
(10:51):
All that time that the trache wasn't in this time that he's not breathing so this has to happen really fast and of course it was during a health care committee with health care work you know talking about the health care workforce and sitting there my yellow pay parent caregiver shirt saying you know we're workforce we are ready to enable and my son has the crisis.
And that's just what I do is you know exactly how to do it except and you know what that it is it is an extraordinary job that you're doing most people would not know how to do this and a lot of people would be very frightened of a situation like that well we made a little scene yes.
(11:31):
We did hear some people but again it's it's his life it's it's a life it is we he has seizures that stop in breathing and require him to be manually ventilated with a bag.
He has blood sugar drops where he's all the sudden bluish and we can't figure out why until we test this blood sugar and he's in the 30s he he didn't he's non verbal and non ambulatory so there's no way that he can say something's happening to me right now I need help you have to just know him you have to know is this a seizure is this blood sugar issue is this a trade plug and without that knowledge without that.
(12:16):
Absolutely if cared that only my husband I have with him you're just not going to you're just not going to know and you know specifically exactly what those presentations look like with your son with tenzy and you know exactly how to recognize that much more quickly than other people would.
And are are the non family caregivers that you have had nurses are they all trained as nurses.
(12:46):
We have I mean we have my my friend who's yeah she she's had her own.
With significant medical needs and then we do have you know family members that we've had as caregivers as well we don't have.
Outside sources none of our none of our caregivers even our nurse is ever alone with him I am always there or my husband is always there he.
(13:10):
He requires that kind of care and there's just there isn't anybody else that can take that play.
Whether we're paid or not we are always with them right and that means opportunity cost for you that means.
You know you still have a need to provide tenzy and your whole family with a house and food and all the things.
(13:34):
So how's that happening like how how how how our family is dealing with that.
It's it's not you know I don't know if it's not so family we couldn't we are we weren't floating we weren't able to it wasn't sustainable for us and that's why I have to go.
You know spend so much time over at the other house.
I just we financially could not afford it in this economy to be with one with one income.
(14:01):
Yeah and my husband works.
Days often eight eight and then I work nights so we just switch off and I just maybe.
Two to three hours a day on a good day and that's something I have been doing for years prior to this when I was my son's paid caregiver.
During pandemic I stayed up nights with him and even before that when I was an unpaid caregiver I stayed up with nights with him because there just isn't anybody else that's there and capable and willing to do that.
(14:32):
I really want people to hear that because you know to me I spent about the first 10 years of my daughter's life.
Sleep deprived but not to that extent I I was always watchful for seizures because she doesn't have epilepsy and they would tend to happen at night and sometimes there was an actual.
(15:00):
Event that that necessitated her response and so.
I having had that experience I really really value and understand the importance of sleep and.
I'm in all how you're here talking to us because.
(15:25):
I don't always come out well but it comes out.
Because sleep loss I mean it's a it's a technique that's used for torture people it's a you know it's a medical necessity for people to have sleep.
But the alternative is my son wouldn't be here so I'd much rather be sleep deprived and have my little boy and.
(15:51):
And the opposite and like you know like many many parents I'm willing to go to whatever.
Whatever and I need to to make sure that he is provided for all three of my children are provided for and that means being away from my home five nights a week.
And it also means that my husband is often awake a lot at night as well and then goes to work 12 hours a day because our.
(16:17):
Night caregiver just doesn't have the expertise on tends to handle it all alone.
Yeah.
And you know that that goes to speak to to developing better choices and that we do need the robust workforce of other people to come in as well.
(16:42):
And share that caregiving with us.
Absolutely. We always had outside caregivers if we can if we could find them. Yeah and I think that's something legislators don't seem to understand sometimes or the general public some people I've talked to you don't seem to understand.
You know 24 seven is 4.2 jobs so.
(17:08):
And how if you have even if you didn't need to earn money somewhere else if you have two people working those 4.2 jobs it's already exhausting throw in another job for pay.
And it's really untenable and an amazing that anybody is managing to do it for any significant time.
(17:32):
Not sure if anybody is I really don't I you are family struggling constantly I am not though I mean I'm really I I put on a good face but this is not sustainable.
I know this is not sustainable. My husband I are concerned about both of our health. I've had back surgery already and I'm looking at back surgery again in the future because of you know the lifting and the transferring of tens that I do constantly.
(17:59):
You know for the longest time we didn't have a wheelchair handicap accessible vehicle because it wasn't affordable to us.
We say had to save up six years to be able to afford a handicap and that was with extreme cuts to our budget to be able to afford the vehicle we have is common before that I was having to lift this 90 pound wheelchair yeah.
(18:24):
And that's another piece of it to is that you know if you had income I'm sure a lot of it would be going to those extra expenses that you already have as well.
I think it's so important that we can say that this incentive to you know this idea of paying parents for their labor it actually gets the children out of their home and into their community you know we say I use home and community based services.
(18:51):
Yes this keeps children in their home but more importantly it gets them out into their community you've got people that know the kids the best are a comfortable traveling with them you've been given the financial freedom and when I say financial freedom I mean this very you know 22 hours an hour you're not you're not rolling in money but you're given financial freedom to at least you know.
Take your child out to a target and perhaps buy them a toy and wander the aisles without hoping you know your credit card was going to decline for getting gas on the way so it's it's these these supports that are so needed by all of our families.
(19:30):
You'll be able to keep our children at home and to keep them out in the communities and one of the main things parents we parents are going to do with our income is pay the house that the child is living in that's a main I mean a thing right there even if you don't talk about extraordinary or fun things like going together.
You know like that's an exciting outing for us. I get it we can afford and and you know my my husband and I were dependent on his income when income it was long enough ago it was a little more doable and we experienced a time where he was laid off with no notice and we had zero income for four people.
(20:16):
And and that was terrifying and I wouldn't want anyone else to go through that and if we had income from caregiving.
We might not have moved out of state for him to go take another job which was not people for my daughter for all of us and disrupted a lot of things that she had going on prior to that everything from school to.
(20:43):
So doctors to people that we knew in the neighborhood and and said hello to when we passed Montstreet you know and I'm going to realize how important that is that community for our families for children yeah.
And actually the circle of doctors to switch specialties switch you know every all the I couldn't even it's exhausting one retirees I can't even imagine switching all that yeah.
(21:11):
And and we didn't have so many as tens he does but it was it was a lot and and it disrupted my child's life and had a negative impact on her.
And we were instead of keeping a stable in a home that we could stay in and continue to provide for her.
(21:32):
Yeah that's we hear it again again that these families are desperate that you know it's it's a real close call between.
And I brought my child off at the emergency room or can I pay this month's rent. And that's really where families are left those are the choices that the state is putting on our families.
(21:55):
We're going to take a break now please stay right here and we'll be right back.
Thank you for sticking around we continue our conversation.
There are there are you know we heard some extraordinary stories in the testimony for Senate bill 91 and I would strongly recommend everyone listen to that testimony because I think it's really powerful as to why this pay for parents is important and one piece of the puzzle you know we've touched on the need to expand expand the non family workforce as well but really we do know our children best our children often choose us
(22:36):
to their reasons sometimes when it's not safe to have outside caregivers and and there's a work for shortage so sometimes they can't be found so.
Exactly asking for you know the ability to work all of our children's hours I know most parents actually do want outside supports to come up we're not asking I don't want to work.
(23:02):
554 hours a month for my son will be you know I strive to see how many hours I can get filled by outside hope so that I do have that.
Respect but that the help just isn't there so if the helps not there I can't go to work I can't.
Get out and do things without.
(23:26):
You know somebody somebody else helping so yeah until that exists until that workforce is fully trained fully staffed.
And even then you know you you still won't know them as well as parents will yeah I keep coming back to the the n scene in Lord of the rings and and Sam says to photo I can't carry the ring but I can carry you you know and it's if the state can't provide all of the direct care that our children need.
(23:55):
Then which sometimes it can't.
Then it can do things to wrap around us as a pair and a family such as pay and it can we're giving them the way to do this we're saying this is how you do it and they're saying yes we're happy to do that we're happy to have you parents doing this we just don't want to pay you for this and they call it natural supports and these are not natural supports these are hours that are deemed.
(24:22):
And this is very by the state that go above and beyond the typical you know the typical needs of their peers and when these when these is frustrating when say.
When the service hours are calculated they're they're extremely carefully calculated to discount.
What would be typical parenting expectations and to only provide for exactly extraordinary needs due to a medical condition or disability and you know changing a trick is not something apparent usually the committee hearing floor yeah expects to have to do when they have a baby that's not part of ordinary.
(25:04):
Yeah parenting expectations so I agree and neither is you know helping on the toilet for a teenager neither is.
Feeding for a number of things J to sure you know venting the tubing and just I there's a million things I do all day.
(25:25):
I'm adjusting oxygen I am checking for blood sugars I am watching for seizures I am often treating seizures I am helping him get in and out of places I am doing.
You know hygiene cares every single thing that needs done my son depends on me to do those things and he doesn't want a bunch of outside people coming in to do these personal cares he doesn't want a bunch of people he doesn't know and he doesn't trust.
(25:52):
Taking away his autonomy you know yeah I know what he wants and I am willing to help him achieve what he wants not everybody can say oh that must mean that he hasn't itch on his right cheek but I will I will know that so you know just see a little thing that he is so dependent and is really hard to.
(26:18):
Watch him with anybody else because they are they just don't know enough to meet his needs yeah so even even our best caregivers.
Out looking for better jobs that pay more money and it you know move them up in the field and home health is not that situation so even the very best of them we don't usually have long enough for them to truly get to know to get to know tensy yeah that's another aspect of this really.
(26:44):
Caregiving it's so personal and it really does matter that you're getting to know each other really well completely and mentally as a as a mom and child or any caregiving bear and you do have.
You know that inside out knowledge at a second to understand what a little facial expression means or what.
(27:12):
Happened yesterday to the child that they're not contextualizing when they're talking about something or.
You have a certain knowledge that does really that continuity care coming up there is a hearing on February 4th.
About tens birthday yes that's so exciting that's such a cool birthday present.
(27:36):
It's a really cool and yeah it's our first hearing committee and.
It's a health committee and they are going to be just focused on tensy's loss and it will 538 it's the only thing they're doing that day in that committee and we're taking it over.
We hope that any listeners of yours would like to join us at the capital wearing their yellow we're going to sit in the committee hearing and just supply testimony and show legislators what.
(28:06):
Real people that need real supports look like and I think that's that's the importance of having tensy's name on this spill those legislators know him at the time a day they can look at tensy and say this is a real person and this real person.
These real supports he is not getting those right now.
(28:27):
Yeah that is why we bring up you know why he's he's brought into this conversation so much and why then build named after and it's he's the face of.
So many so many children are not able to get to the capital that are not able to advocate.
At the level that we've been able to we've been privileged to.
(28:50):
And I and it and I appreciate it is a huge service that you've done as well to to step into that role and and run with it when you could.
And it is doing a lot of families a lot of good is what will do for kids for for all of our kids you know across the state.
I not alone on this I could never do this without the team behind me we have an ad hoc group of incredibly dedicated parents and.
(29:20):
Children that they they all you know support and it's just it's amazing to watch this team and what what we have all accomplished fabulous.
I plan to be at the hearing with my daughter I will put links in the show notes for further information about that.
And we are looking for passage of this bill because I think it's so needed and so.
(29:48):
Just the right thing to do and over do and it's it's just clearly the right thing to do for the children.
And the state financially for the parents it's the right thing to do all the way around.
It's ethics at this point is moral and ethical issue and if we want to keep children in the homes and get them out of their into their communities.
(30:15):
The only way to do that is support families and the best way to do that is to pay parents for the labor that they are all the day providing.
And the fact that the community you want to make sure the child remains within the base of that is the family.
So if you want a child in community it's exactly it has to start with their family.
(30:40):
There's just no other way around it.
Absolutely. I mean last night we're playing sorry with Tenzie and he's got a little switch adapted dice roll and I was just seeing they're watching you know my three kids and my husband and I were sitting around the table playing sorry and it's just.
I'm trying to give me a sense of completeness.
It's a sense of completeness it's this is where this is who we are this is where we belong.
(31:02):
This is the childhood I want my children to have.
That's awesome.
Yeah simple but it's what I'm asking all I want is my family.
Yeah.
That's all right.
Being here and kept together.
Yeah.
Well thank you so much our time has come by and I really appreciate it.
(31:24):
This is love doesn't pay the bills. I'm Lisa Chuty.
If you appreciate the podcast please tell a friend and we will see you next week.
Thank you Lisa.
[Music]
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