Latest / Inchstones with Sarah | Autism Advocacy & Caregiver Stories / Severe Autism, Caregiving, and the System That Fails Families with National Council on Severe Autism's, Jackie Kancir.

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Severe Autism, Caregiving, and the System That Fails Families with National Council on Severe Autism's, Jackie Kancir. · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Well, hey everyone. Welcome back to the Inch Zones podcast. I am thrilled that through leaning into my advocacy work, I have discovered some of the most incredible women that have leading, that are leading not only parallel lives, but are Joan of Arcing their own way through the current realities of profound autism parenting. And I am thrilled to welcome Jackie Cancer to the podcast today. Jackson Jackie is the president of the National Council of Severe Autism and is making so many profound waves, and I don't use that word lightly. She really is taking it by the reins and leading with such grounded truth and reality for families, women and mothers and caregivers like myself. Jackie, thank you so much for being here on the Inch Jones podcast today.
• 0:47
  Speaker B: Thank you for having us. It's really exciting to be here with you. Sarah.
• 0:51
  Speaker A: Y' all are making moves. Tell me in as long as you'd like or as condensed as you'd wish, what led you right here, right now? March 3, 2026, as the president of
• 1:05
  Speaker B: the NCSA executive director, Jill is still the board president. So I'm the executive director. But honestly, it was a clumsy ride. It was just the experience of life. I kind of was, I think, born into this role. It started at 2, when my brother was born as disabled and abdicating along the way, growing up for him and then eventually branching out for others. And then I had my daughter at 23 and she has severe autism. I just posted a reel last night about this, but times were different back then and there was very little understanding. There was a lot of dismissiveness for parents who recognize that something was different for their child very early on. My daughter has a genetic form of autism, so her story is not the same as everybody else's, but we do have confirmed hers is caused by a genetic variant called Syngap1 related disorders. And so immediately I noticed something was needing attention, but it took a very long time back then. So my life's work, really, I think fortified there with my fight to get somebody to listen to us, somebody to provide the right types of treatment and a very long journey in how to trust myself. I wish I would have learned that earlier. So that's something I really try to support other families with now, is helping them feel more empowered and helping them learn to listen to that inner voice with their child and to keep digging for answers that they know the questions are there.
• 2:56
  Speaker A: Yeah, you know, I was talking to someone recently about how when her son was diagnosed, and this is in around 2009, 2010, you know, Instagram TikTok was not nearly what it is Today and how those, those first groups, those first Facebook groups of women and mothers and caregivers of profoundly autistic children, you could almost feel the nervous system dysregulation within those groups because there was such little availability for containment of the truth that it just poured out in like it almost, it almost became what I call like that self licking ice cream cone. Everyone was kept in their struggle because there was no outlet or regulatory space for women and mothers and caregivers to process the reality of their lives. And you know, one thing that you and I have discussed before is that in the mid-1900s when we deinstitutionalized and changed the landscape for families of profoundly autistic children, the infrastructure never followed. And so now, now what? What do we do with that? I think that you have some of the best layouts and systemic changes that can happen. But I'd love for you to share more with the listeners about what that infrastructure could look like if we actually listened and built a structure around families like ours.
• 4:16
  Speaker B: Well, exactly what you just said. It's going to have to be built around the families. It's going to have to include whole family support and no longer looking at this through a very singular lens. Autism is a complex disorder and it involves multiple systems. It is a physiological disorder as much as it is involved with the neurobiology. This doesn't impact one family member. When you have severe autism, the siblings are impacted, the parents are impacted, and all of them need care. And this isn't to say that they are sidelining the person with autism. It's to say the natural supports that that family unit is the person with severe autism greatest source of support. It's the cheapest support for the country and it's the greatest support. And so we have to make sure that we are taking that into account and we are lifting them up and providing them resources and keeping them healthy and whole. And by doing that, that is our greatest access to improving care for the individual with severe autism. We can do a lot of other things that can improve the support structure, but if we don't focus and prioritize on the family, then we're really missing the ball here in getting a return on our investment with care services.
• 5:47
  Speaker A: I always like to try to drill this down to give like a small example, but like take a family like mine and I, I'm not saying to take the details, but say there's a mom, a single mom with, with three children, a typical developing and maybe a child with higher support level severe autism and one with maybe level two autism. What would a plan look like if we actually as a country supported her as the mother to allow for those children to get what they need without completely dismantling the family from its core because there's only so many limited resources that a mother or parent can have. What would be like that? Step one that could at least help everyone. Understanding, listening what that looks like. Is it, is it that you call, is it that you self register yourself and say, I am the parent of children with profound autism. I notice I need XYZ in terms of supporting my day to day so that I can provide for my family? Or does that from you look like something that is given to families one year diagnosed? Does that look like.
• 6:57
  Speaker B: So we've talked about in the past kind of the intersection with the military. And so for me, I think that it needs to be more structured than that in order for it to be affordable for the nation. So there's a couple avenues towards that. One thing that I've thrown around with some legislators is that the Social Security Administration has what's called, called the compassionate Allowance list. And this is a very limited list. Syngap1 is on it. But this list really is something that is very thoughtful with the Social Security Administration. And these are the conditions that if you have one of these, you have a lifelong debilitating form of disability or a terminal illness. And therefore you don't have to go through all the hoop jumping that you might have to go through regularly for Social Security. It's a fast track system. So I would like to see something like that developed on the CMS side and a whole new waiver system that is very selective to those that have this significant support needs across the lifespan. It's a, it's a terrible term, but in absence of a better one, this cradle to coffin kind of chair that is going to actually outlive, God willing, the parents themselves. So those individuals need a very intensive type of waiver support that will include whole family support. And in addition to that, another model that I look towards is the comprehensive Family Caregiver Program through the Veterans Administration. And, and that program really I believe lays out 95% of what we would need as autism and rare disease caregivers. I mean that program, I was part of it in its earliest formation and then through the freeze and the Mission act renditions. And in that program you started out with, first you had to go through rigorous exams to qualify for this program. And then we got modules that were through, I believe, Easter Seals. So we had to Watch through these modules. This is where you learned how to take manual vitals. You learned the kind of things that maybe you just never thought of before, like how throw rugs are a fall hazard and those kinds of little tips to help you be a better caregiver. And you got training because we're doing the work of rns. And I mean, I've had to learn how to catheterize my daughter and all these things. But we don't get formal training. So formal training is built into that program. But the support is so high quality in that program, you are assigned one specific RN that comes to your house every 90 days. They not are just checking on the veteran, they're checking on you. What is your caregiver burden? And if you score high on that scale, then they have a whole list of resources of how to help you and they have ways to connect you with other caregivers so you don't feel so alone. And we don't have anything like that on the CMS side. It's only available on the Veterans Administration side.
• 10:32
  Speaker A: Yeah, you know, it's. I know I've shared with you. I love just my independent study on primal evolutionary biology because there's something that we cannot divorce and separate as women and mothers and caregivers that we have an innate drive to tend and befriend. And I think that the isolation, that caregiving and mothering of profoundly autistic children becomes this, this isolation point that we have got to make that correction towards any interaction that's available through the lives and support of others in similar situations become this freedom for their nervous system to regulate. I think that we can't get away from. I can't run away from being a human woman. At the end of the day, you know, I, I know that you and I share similar understanding of the United States Marine Corps. I am not going to be the best frontline Marine in combat. There is not a snow, no bull's chance in hell. But I am a damn good special needs caregiver and mother. That doesn't mean that I don't need support for the trauma and for the mental capabilities that I have endured and what that's done to my nervous system as a strong woman, mother and caregiver. You know, and I think that I, I love discussing this because we have glorified as a country as a way to look away from the terrible dysregulation and what has happened to women, mothers and caregivers in this country and around the world who are put in situations where it's smile and be a martyr and do it looking really, really well.
• 12:05
  Speaker B: Yeah.
• 12:05
  Speaker A: I wonder if about, like, how can we take that and become that s isomer for what's already in play in the. In the veteran community.
• 12:14
  Speaker B: Well, you know, it really comes down to formal advocacy. We work to provide our community with a variety of ways to get involved because this is a community with very little bandwidth left. Right. We all have these over full plates. We have all reached that day where we thought, I can't do this anymore. And it happens the next day and you do do it. And it happens the next day and you do do it. So we're well beyond our breaking point. But that doesn't mean that that fear of what if there really is a real breaking point somewhere. Right. So we don't want to pile on a lot of additional tasks and responsibility and advocating. The bottom line is. I wish that. Right.
• 13:06
  Speaker A: Sorry to interject, but, like, relief does not depend on the mother managing it. That's also what I hate to say here. That's what I just. Yeah, like, relief cannot depend on adding to the management of the relief.
• 13:18
  Speaker B: Right. And I say all the time, and I do. I have. My daughter is formally classified as one of the highest needs in the state through the CIS assessment. And yet the supports intensity scale. Sorry if I do the whole acronym thing. Get on me about that. But, you know, even at that. So this is not a questionable situation where, well, maybe her needs really aren't that high. This is somebody with very high support. And yet I always say my daughter, caring for her is not the actual burden and stress I feel. It's managing this whole system. It's the coordination of care. It's doing all of that without support and with very limited results at the end of the day. I mean, I'm a professional advocate. I run a national nonprofit, and I make very little leeway whenever I am advocating in these meetings for my daughter. And I always have in the back of my mind what happens for the mom who got a GED or who immigrated here and English isn't her first language or doesn't have a family history in these things and doesn't understand this terminology or doesn't know what to ask for. Why is it. Why is the onus on the family to have to fund, know what to ask for, then ask for it, then get all these doctors orders and then have it denied by the insurance company and then have to go through the appeals process and they're doing all this. It's like, who built this System. It is a system designed to fail
• 14:59
  Speaker A: the, the well, right. When you, when you spell that out just now, just in one example, the bandwidth for whoever this fictitious person that we all know and can name in our groups and support groups ever, the bandwidth is so low and I know that you and I sit very nestled to the next thing I'm going to say. The risk of impulsive collapse is so high. It is so high because a healthy structure would not allow for a single point of failure like this. And the problem is that we are putting the single point failure on mothers to do more more, manage more, be the logistician and do it with a smile on their face when they are literally drowning and one finger is left to say I need help.
• 15:42
  Speaker B: Like I'm not okay, you know, I. And again, to take this back to the veteran community, I seen the same dynamic already play out once, you know, oh, it was probably about 10 years ago my ex husband had posted. We lived in Fort Campbell. If you lived, you live anywhere near a military base on the 4th of July, it is quite an experience, but especially so if you worked in heavy artillery overseas and you're sleeping and there are these booming sensoral inputs while you're sleeping. You're waking up to this like you can feel it in your body and not just one night all month long, right? So very rarely did he ever mention ever having any kind of negative impact from his service time. But that was that one day where he spoke out about it. And there was a couple, most of it was supportive, but then there was a couple of other veterans who were like, oh, you know, just suck it up and PTSD is not real and these kinds of things. And you know, the most heartbreaking part of that was that it was only maybe three years after that that one of them had taken their lives. One of those that was like, oh, just suck it up. And so I see this in our community a lot. We get a lot of pressure from outside people who just don't get it. But the families within, it's these other moms who think like, that would never be me, I would never do that. And that's the most harmful, right? And those are the ones I'm most concerned about because they don't even recognize the risk here because. And I'll give another veteran example. I had one friend whose husband had never, she had no idea. He had never mentioned that he was struggling with his wartime experiences and he had gone out with some friends earlier that day. And this is the middle of the day, it's like 3 o' clock in the afternoon, he comes home, he pulls up in the driveway. She's in the living room with the children. He walks in, walks past the living room to their bedroom, and then walks back. And she hears the front screen door shut. And three seconds later, she hears a gunshot. And it's like there's no warning. And so the risk of this is not something abstract. This is not something I'm being hyperbolic about. This is something I have been in this field across multiple domains for many years, and I am trying to tell families, you have to know what the risks are. You have to have a support system, you have to have a crisis plan. And this is why, because you can handle it until that very second where you can't. And you don't know when that time is.
• 18:40
  Speaker A: Well, you can't. I'm very thankful that our country has at least able to talk, using greater detail, as we did 10, 15 years ago, about PTSD, begin funding treatment for it, talk about reintegration to society, debate on how we support it better, and that it's at least coming into similarities within the profound autism and severe disability community. What I realized that through that story that you just told is that the nervous system of the caregiver learns through parenting a severely disabled child that danger is not occasional, it is ambient. It is always there. And adaptation begins to look eerily familiar across the board to severe PTSD military veterans, hyper vigilance, sleep disturbances, crazy startle responses, difficulty ever relaxing. Those mirror each other. And I'm not saying that it has to be the same exact term used for it, but what we call trauma and severe PTSD we've just called motherhood here. We just, we just call it. That's motherhood. We call it devotion. We call it being really strong. Then stories come out like the one in Perth, Australia, a few weeks ago where a well to do in a well bedroom community with two working parents and two severely disabled teenage boys shot both the kids and committed suicide, double suicide. And people are gasping to put the formal thought process back together in a way. But you can't put that story back together without addressing these parents and what their bodies were under.
• 20:28
  Speaker B: Yes, so I, I was excoriated by people who just don't get it right when I talked about this. And I was in no way condoning what these parents did to their children, but to me, there are four victims here. And sure, there is a level of culpability that is increased for the parents, Right. Like they weren't innocent disabled children. They were adults who maybe they could have called somebody or maybe they could have done this. But this is, this is why I'm having these conversations because maybe they didn't know that they were even in crisis until they were in crisis. I mean you, it happens so fast.
• 21:14
  Speaker A: It happens so fast because you know, I even from the most well, well meaning supporters and I'm sure you have to, you know that antiquated like tough cookie. Like tough cookie. You're such a tough cookie. You know, caregiver that has no bandwidth left is I believe equivalent to a veteran who has been functioning in survival mode returning home for so long but without adequate integration or reintegration support. They're still standing, managing logistics but the margin for error is gone. And I know even as someone who is so radically protective of the way in which I regulate my nervous system, that's taken, excuse me, 10 years of mothering a severely autistic child and then now her brother too to even understand what my needs are. 10 years. That a lot of times, yeah, I mean I don't know even get that
• 22:02
  Speaker B: that I would have gotten through this,
• 22:04
  Speaker A: that that is such a heavy burden. But that's reality. It's I, I want their again. I, I know that you and I are so bad at sitting in truth.
• 22:14
  Speaker B: So I don't know that I would have actually gotten through this. I look at these cases and I think they're like grace of God go I. Right. Because I don't know that I would have gotten through this if I didn't have that formal training that if I didn't have the experience and the upbringing. You know, being essentially born into caregiving and multi generational caregiver. There were so many times even with the tools that I had that I really just felt so incredibly overwhelmed. So I cannot judge other families. What I can do is try to be part of the solution to preemptively talk about these things, bring awareness to it and provide families tools if you don't feel like you're in crisis. Awesome. That's fantastic. Now is the time to build the support systems and the crisis plan and all those things in case. Right. God forbid you ever end up in a crisis. I mean you can't do it once you're already in crisis. So you know, I got all of these really self righteous comments when I was talking about this of well my kid bit me and I've never, you know, ever thought about harming them or you know, my, my child is non verbal and I've never thought about harming them. And all I can think is like, who are you talking to? I mean, my daughter is thriving and you know, she has this homestead and all these things. And again, she's one of the highest support needs person in the state. And clearly she's fine. I've not harmed her either. But that doesn't mean that we're somehow superior to these parents who just collapse, you know? And I think that us not having these conversations is contributing to the harm and to the frequency of these cases.
• 24:15
  Speaker A: Right. Cause those become what I believe are a real signal. They're a very strong tell. And by not addressing what actually happened, what the family was seriously enduring and isolated from in terms of support, we have to take that truth and the sadness of what happened and integrate it to do better, as you're saying, not to just push it off to the side. I mean, I had someone recently tell me that sometimes these stories, these profound, severe disability sad news stories about families like this become a beautiful tell for the system, but that we are living in a world where society's like becoming like, we have this autoimmune disorder where we like, the tell is there, the signal is there. This should tell us something about what's going on. And the system starts attacking the thing that's actually going to help you heal the whole body. Right. So we're attacking now. I would never do that. It's identity politics, Right? Like, well, I'm an autism parent and I would never do that. Great. That's awesome. I'm so thankful that that hasn't happened to you. But if this is something that does happen, we have to look deeper as to the why, because they are not the only ones.
• 25:32
  Speaker B: Right.
• 25:33
  Speaker A: And if these stories keep coming out, sure.
• 25:36
  Speaker B: To me, the issue is the system. And we clearly do not have the system in place worldwide. I mean, whether it's Perth or whether it's New York, we don't have the systems in place to truly support these families. And we're not going to get them as long as we keep pretending we have arrived and we have. You know, we've gotten so much better in disability advocacy and people are now living their joyful, independent lives and none of us are ableist anymore. And, you know, the work's all done. I mean, and that, that's kind of the feeling I get within the disability community. And it's just like, that's just not true. There are families who are still waiting for all these promises that the ADA had. Nothing has changed in 35 years.
• 26:26
  Speaker A: False narratives and false narratives are Incredibly intoxicating because they create a lot of comfort for the brain and nervous system. And resistance is a really enticing little thing, right? I mean, even just, you know, getting out of bed in the morning, you know, it's. You can. Your. Your internal resistance to truth can really stop you from doing almost anything. So if it can stop you from some things that don't really affect you on the daily, like getting out of bed or drinking enough water, imagine what it can do for things that actually cause discomfort. Resistance to the truth and reality. You don't have a lot of people. We've evolved as a human species to just crave comfort that we're almost at such a tipping point with it that if anything creates discomfort in the system, people are so quick to put the kibosh on it. Can you tell everyone how they can be if they are a parent living a parallel life to you and I with a severe disability or profound autism? How they can get involved? What does the structure of NCSA look like for parents and caregivers?
• 27:32
  Speaker B: So, again, it's a variety of different ways, because that is, we're trying to meet the families where they're at and with the bandwidth that they have and what their hobbies are and their interests. And so if there's somebody who likes to write, they can write for their blog, or if they are somebody that have a lot of bandwidth, we have something on our website for them to do a quick video. And those have been really helpful. We've shared them with legislators and policymakers. They do pay attention to those journalists have reached out to us about those videos. So I highly encourage taking five minutes. You can use your cell phone, your computer, any device. It doesn't require any downloads, but it just kind of walks you through being able to provide your story. And then we have more formal ways they can join the national Grassroots Network and get involved at their state and local chapters. We have our DC event coming up in July, and we're also going to have another virtual week in April. We had one in September called Voices for the Voiceless. And this brings federal legislative advocacy into your living room. It's done at home virtually, and so our children can even participate. If your child is someone who maybe is not able to travel the distance to D.C. you can get involved legislatively through the Voices for the Voiceless Week.
• 29:05
  Speaker A: I love that. I think that one thing we need to harness and remind people is that it doesn't have to be and why, you know, Inchtones always came about for me. Came about for me. It doesn't have to be a full weekend of your time. You don't have to show every little bit of the highs and lows and the ways in which your family and community are affected by your children and profound autism. You can do something. It might take a minute. But whenever we tell the truth about the lived reality and lived experience, it is never the wrong choice.
• 29:40
  Speaker B: Never.
• 29:41
  Speaker A: The discomfort that comes from the. The world's perception or receipt of that is not our problem. Our mission is to tell the truth. And I believe that the more people that can do that and sit alongside organizations and share with NCSA about what their truth is, the more radical the speed with which change will develop in the system. Because it really is so powerful when the collective experiences are shared.
• 30:06
  Speaker B: Yeah. And I've just tried to shift my mindset when it comes to the negative comments and think like, I'm happy for you. I'm happy for you that you don't get what I'm talking about. I'm happy for you that you get to have this position that you have on this because clearly you haven't experienced this or you haven't been within proximity of it. But you know, I am right there dead center into this crisis within our community. I receive regular outreach through a variety of means and the stories we hear are utterly devastating. And so I know that this is a real problem that we're experiencing in our country and abroad and that I'm going to be doing whatever I can to keep putting the attention on it until we are developing the solutions we need to address this problem.
• 31:00
  Speaker A: Well, you are a rock star and I am so thankful that your voice is sitting on the top of the hill for families like mine and for so many others. I think that you're building language where there, there actually is silence and you're pushing policy to reverse not only not only neglect, but to build like safety around policy. And their feeling of safety is something that so few families like mine and yours feel on a day to day basis due to just the realities of children and their dysregulation or behaviors and lack of communication. And you're giving permission to a lot of families to say, mine included. This is hard. We need more. And I think your clarity and what your courage that it takes to do this is something that I admire so much and I'm so thankful for you for sharing a bit more about why you do what you do and what allowed you to lead the charge for us in this world that we live in today.
• 31:57
  Speaker B: Thank you. Having your podcast here is obviously amplifying many voices within our community. So that's so important that you're getting the word out that way while we're
• 32:10
  Speaker A: standing in the gap for the families that are too tired and have too few resources to do that right now. And it is an honor to stand alongside you, Jackie. I'll be listing all of all of the NCSA details and ways in which you can get involved, whether it's small, large, local, statewide, and national level. I will be going to the event in July. I cannot wait to stand alongside you all and in in support and advocacy for this cause and for your clarity and for your courage. Thank you so very much.
• 32:37
  Speaker B: All right.
• 32:37
  Speaker A: Well, until next time, thank you all for listening here on the Inchtones podcast.