I went to a conference recently and witnessed a very ableist presentation about lead poisoning in children. The researchers were well-meaning. They looked at how lead poisoning altered the development of the human brain and body. The researchers found that children exposed to higher concentrations of lead had higher rates of ADHD and developmental delays as they got older. Over the course of the rest of this presentation, the public health professional was less well-meaning. The main presenter, who had a master’s degree in public health, took a very specific angle in how she approached the prevention of lead poisoning in children. She consistently used scare tactics throughout that were reminiscent of Autism Speaks advertisements. She highlighted the behavior issues in children who had been exposed to lead and talked about how greatly this disrupted families. She started her presentation/slides with a story about a boy in South Bend who “suddenly, one day” stopped developing and it took another year after that to determine he had lead poisoning. His developmental delays, she said, lead to their family falling apart and losing their house. That this “was the reality” for children and families affected by lead. She seemed confident that lead was “causing” ADHD and autism in her healthy community. If you replaced any of the times she said “lead” with “vaccines,” she would have been called an anti-vaxxer. This speech was not, in the end, about lead. It was about finding something else to target to eradicate “problem children.” It was “I did not sign up for a child with disabilities” and lead was the scapegoat.
Later it was confirmed the effect that this had had. Someone asked what to do if they had a child with ADHD or autism and if it was lead that caused it. The researchers said “there is no way to determine that” but the other lady was clear that lead could be behind it and to test their child immediately. She was not a scientist and not able to give that sort of correlation/causation statement. Everyone in the audience left with the message that lead could cause ADHD and autism and that we could erase “problem behaviors” from those by addressing lead poisoning. I heard so many people in the hallway talking about how they just had to share with everyone they knew about this threat. I felt so stigmatized and like this was just going to increase the erasure and masking of people like me.
I only recently discovered I am autistic and in the past few years have been diagnosed with/put on medication for ADHD. I have been so high masking (hiding and over-compensating for my autistic/ADHD behaviors) my entire life and have had the privilege of being able to maintain that up until this point, but that comes at a cost. I have only just been able to start unpacking how much damage and trauma have occurred as a result of masking for this long and not recognizing what my needs are. Not even knowing that I had different needs, because as far as I knew I was allistic (not having an autistic neurotype) and the reasons that I wasn’t completely fitting into that box were a myriad of character flaws. What caused this? People like this speaker, who punish or medicalize needs like these as “problem behaviors” instead of having compassion and realizing that not all “abnormal” behavior is inherently a problem requiring a fix.
I think researchers and health advocates get the wrong idea. They think we need to be “saved” from our disability, that preventing other people from experiencing disability is the highest priority. The reality is that I don’t need to be “saved” from my autism or ADHD. I need society and our structures to accept me the way I am and meet me where I am rather than creating arbitrary rules that keep me from being able to participate fully. The reason, in large part, that my autistic/ADHD experience is that of disability is that society is not built for the way my brain works. It is also inherently traumatic to live in a world that is not built for you. And it wouldn’t be much of a stretch to make those adjustments and be cognizant that other people may have different neurotypes than you. Everyone loses when we squash the neurodiversity our species is capable of.
Though I struggle a lot with my mental disabilities even outside the constraints of a society not built for me, when I am able to be as fully my authentic self as I can, I am capable of amazing things that my allistic and neurotypical peers are not. Contrary to the pervasive narrative that autistic individuals have no empathy, most autistic people I have come across have an over-abundance of empathy and an innate sense of justice. We are often creative, have great attention to detail, and think about problems outside of the box. Autistic brains tend to do what is called “bottom-up processing.” This means that when we approach a problem or question, we collect as many details and smaller pieces of information about the problem as we can to then form broader conclusions about the problem. Allistics tend to do what is called “top-down processing,” which is the opposite. They approach a problem by finding generalities about the problem, typically based in what they already know, and then move into the details. It is valuable to have both approaches, as they can come out with differing perspectives to be considered for the problem or question.
I will end this narrative by emphasizing that if you’ve met one autistic person, you’ve met one autistic experience. We exist on a spectrum (which looks more like a radar chart, not a line from “more autistic” to “less autistic”) for a reason. We all have our own unique support needs, strengths, and struggles. But we are valuable to the human species just like everyone else and should not be erased or suppressed. If there were a magic button right in front of me that could “cure” my autism or ADHD, I would walk away. (Not everyone with my disabilities may feel this way. I have lower support needs than some and can be relatively high masking when needed, which gives me privilege.) I know my worth and I’m going to keep fighting for it, regardless of what people like this public health professional have to say about it.
Bio
Gwen (she/they) is the Violence Prevention Program Evaluator for the Indiana Department of Health. They did their undergraduate degree in public health and bioinformatics at Miami University in Ohio and Master of Public Health in epidemiology at Indiana University Purdue University Indianapolis (IUPUI). They are AuDHD (autistic and ADHD) and proudly part of the LGBTQ+ community. Outside of public health work, Gwen likes to engage with her special interests and spend time with her spouse and dog. Together with their spouse, they go to comic conventions and play Dungeons and Dragons. They also occasionally volunteer for a dog rescue.
The Importance of Home Healthcare with Jody, Danielle, and Diane
Interview on January 17, 2023
This video is an interview about how three people with disabilities navigate the home healthcare system. The guests are Danielle Pitmon, Diane Pitmon, and Jody Michele. Jody Michele is the interviewer, and the translator and moderator is Cierra Olivia Thomas Williams.
The questions that are discussed are:
Tell me a little bit about yourself and what disabilities you have.
Why is home healthcare important?
What are some of the major issues that you have had over the years with your aids?
How can the system be improved?
Video Transcript
Jody
Hi. My name is Jody Michelle
And Indiana.
And today Indiana disability justice will be talking about an important topic.
We will be talking about home health care.
Home health care is when people come in to take care of the needs of people with disabilities.
So let’s get going
Cierra Olivia Thomas Williams will be the moderator.
Cierra, take it away.
Cierra
Okay, Panel. I’m so excited to hear from you.
So why don’t we start with you, Jody?
Tell me a little bit about yourself, and what disabilities you have.
Jody
Well, I’m the communication coordinator of idj
And I’m also the hub coordinator of idj.
And I have cerebral palsy and depression and PTSD.
Cierra
Thank you, Jody. Danielle, tell us a little bit about yourself, and what disabilities you have
Danielle
My disabilities I have is legally blind, borderline personality disorder.
Bipolar 2, PTSD, generalized anxiety disorder, major depressive disorder, and I also am undiagnosed as having autism.
And I think that’s it.
Cierra
Yeah. Tell us a little bit about you.
What are you into?
Danielle
Oh, about me! I am an advocate of people with disabilities, and I run my own advocacy program personally, along with my wife. And we speak on the accessibility for those with disabilities and for the ability to have the right assistance even in domestic violence. And also speaking on behalf of other clients, if necessary, to help them. And that’s pretty much about it.
Cierra
Thanks Danielle. Diane, why don’t you tell us about yourself and the disabilities that you have?
Diane
Well, one disability I have is severe arthritis. And it’s called Arthritis Mitosis. It’s in the muscles and the joints.
And I am in 24/7 all year-round pain. And it’s nonstop. And I have PTSD And anxiety
Danielle
Depression too
Diane
Depression too.
I’m not getting out as much as I would like to
But it’s hard on me.
Cierra
Do you want to share anything else about yourself?
Diane
I am an advocate for people with disabilities, and I help them figure out which building to go to or not go to, because some buildings are not so they don’t have ramps or electric doors.
You have to rely on somebody to help you at the door.
And some people don’t care. They do that, but some places they don’t even have ramps to go into. I advocate and help them figure out which building the go to, and
Danielle
what buildings are accessible.
Cierra
That’s nice.
Diane
Right
Cierra
Thank you. Thank you for that work. Okay, let’s dig into this topic. Jody, why is home health care so important?
Jody
Home health care is so important, because it allows me to live the life I want. Without home health care, I would have to live in a nursing home. And that would mean a very different life.
Because of home health care, I am able to live in my own home. And I am able to be self-employed. And I am able to be active in the community. I am able to be a part of my church family as a minister.
So that is why home health care is so important. It allows me to live the life that I want. I need people to help me out of bed and shower and get dressed.
Yes, thank you, Cierra, for asking.
Cierra
You are welcome, Jody.
Danielle, why don’t you tell us why home health care is so important for you?
Danielle
Home health care and important to me, because it gives me the independence of living in my own home which me and my wife purchased. And it allows me to have the supports when I go out in public to be able to function as best as I can because of noise problems, light issues and just all around stress and anxiety. And I also have the opportunity to be able to pick my own staff, and we’ve got 2 really good staff right now that are wonderful to have.
And it’s just necessary to make my life a lot easier to have the help that I need without getting overwhelmed and eventually ending up back in the hospital again, or ending up with having severe problems with my autism
Cierra
Thank you. Danielle. And what about you, Diane? Why is home health care so important?
Diane
That way. I could live in my own home that I love with my wife, Danielle, and she is so precious to me. And we, I enjoy having my own home and that way staff come in, help me get dress, get ready. And some days I do stay in bed because of my arthritis.
Some days it’s just so bad. But other days I do get up, do what I want, and just be who I am. And the staff that we have now, they let us be who we are. And they just, they just love us to death and we love them to death. And with, that’s one thing about staff that we like and will get along with, I really understand about our disabilities.
Cierra
Thank you. That’s really, that’s lovely to hear. And so let’s get into some of the major issues. So, Jody, what is some of the major issues that you’ve had over the years with your aids?
Jody
Because we don’t have enough people in this field, I don’t know if I would even have an aid on a particular day. And if I do, I don’t always know who that aid will be. This causes a lot of anxiety for me, because I don’t get to have a say over who comes into my house or when. I have to build my day around my staff, instead of the other way around. I don’t get to say who touches me in the most private of places. So the fact that we don’t have control is one of the main problems with the home healthcare industry.
Thank you, Cierra.
Cierra
Thank you, Jody, for sharing that. Danielle, why don’t you share with us some of the major issues that you’ve had over the years with your aids?
Danielle
Some of the issues I’ve had where we’ve had aids that didn’t believe about all of my disabilities. They didn’t believe on, on my mental health problems. And I was literally just treated like a number at times, and without any regard to me being a human being. And they basically just put anybody they wanted in here without even consulting us ahead of time in the past. But now in that area things have begun to change. And also the fact that the one problem I have with the system is they want me to actually use transportation independently and because of all of my mental health and disabilities I currently cannot do any of it without having major assistance, because I get very burned out, and I get to the point sometimes where I will shut down. Or I will just have time where I just need to get into my room and have a weighted blanket over me and darkness. And there are staff that haven’t really respected that. But now I’ve got staff that actually do respect that.
Cierra
That’s great news! Diane, what are some of the major issues that you’ve had over the years with your aides?
Diane
Well, during time Danielle was in the hospital, and I had some good staff and some bad staff. gets underpaid too. Because most providers don’t get enough pay for staff to actually come in.
Danielle
I’ll add to that.
Diane
Danielle wants to add to that.
Danielle
What it is is basically they started off pay for staff at a very low rate, like around $14 an hour, and they stick at that level for quite a while, but then over time maybe they raise the pay up for the staff. But, otherwise, it’s just so underfunded underappreciated staff and that basically they just don’t get enough money, so we have a high turnover rate of staffing.
Cierra
Thank you.
Jody
And, I do want to add most aids don’t even get $14 an hour.
Cierra
Thank you. Okay, so let’s, let’s talk about what we can do to improve the system.
So, Jody, let’s start with you. How can the system be improved?
Jody
Right now I’m getting enrolled into a program called Self-directed. This means I will be able to hire my own staff. This is a big deal, because I will be able to have a say who comes into my house and when. And I will have a say in who gets to touch me.
If they disrespect me, I will have the power to dismiss them. I will be able to have them come help me when it’s best for me. And I won’t have to work around their schedule. I won’t have to rearrange my life around the staff. And that is really awesome, that I will have more control over my life. I really believe we need to push this program so that more people with disabilities have control over their lives.
And that’s how we can make home health care better. Thank you.
Cierra
Thank you, Jody and Diane, and excuse me, Danielle, how can the system be improved?
Danielle
One, the State needs to be able to paid staffing more, to be able to retain staffing and 2 Medicaid needs to direct more funding for the staffing pay level. Otherwise they’re just gonna continue having a high turnaround in staffing. And stop having the providers have more of the money instead. That needs to change as well. Also, maybe change out some of the control problems with the IR with other reporting problems like, yeah, logbook. And you know, cause it just. It just makes it impossible for us to really be self-sufficient without being monitored every little, tiny thing that we do
Cierra
Danielle, what’s an IR? Can you explain a little bit more about that?
Danielle
And it’s an incident report.
Cierra
Okay. And how is it used against you? Do you have an example?
Danielle
It’s use to basically state that, issue is with the client rather than with any other system out there. That’s not effective. And most of the time it usually puts all the blame on the client
Jody
Hmm
Cierra
Right like they’re like, it’s kind of a way to control behavior.
Danielle
Correct
Cierra
Thank you. Diane, what about you? How can this home health care system be improved
Diane
I agree with Jody and Danielle that really does need to let clients be…
If you wanted to be treated, staff. If the staff wanted to be treated, you got to treat the client same way. You see what I’m saying?
Cierra
So increasing respect.
Diane
Right. And it’s gotta be 2 ways. You know, 2 way communication. And you got to learned to work with the client, how they move, how they do things, and they need to ask the client, what do you need help with or with cooking, or cutting up your food for ya’, stuff like that.
Cierra
I love that. Yeah.
Diane
Some can’t even feed themselves too much during, you know. It’s just sad to see staff won’t do anything for the client if they don’t want.
Danielle
There are staff that are like that.
Diane
There’s some staff are like that.
Jody
Yes, there are.
Cierra
Diane, you talked about transportation before.
Do you want to add anything about improvements to transportation?
Diane
Well for a while I used to, when we had one staff that was with us for a while, and she was able to get the van for us, and that was with another company.
Now that she’s back, for the company we’re in now doesn’t, does not have a van, so I have to rely on
Danielle
cabs.
Diane
A cab or the hospital shuttle
So the shuttle goes to the hospital and goes to the clinic.
Around the corner of us, and they will help us during that wintertime, but other than that, if it’s during the summer, I, Danielle and I walk down, or a staff walk with me to the clinic.
Cierra
Thank you. Thank you so much for this conversation. It has been so productive.
I learned so much and so I wanna go over a few of the things that that I learned about this.
So home health care is so important because the key thing is, it enables people with disabilities to live life on their own terms, to be able to and and what that does is it reduces stress and anxiety which are some of the things that you listed that you that are part of your life
And so some of the problems are that unknown people will come into your house unknown people will treat you with disrespect and touch you without consent or just touching touching you and being a stranger is just can possibly be uncomfortable.
There’s no consultations with staff changing quite often, and sometimes people can have bad staff, and there’s often really high turnover. But all of you had some really great suggestions about how things could be improved.
So we learned about a program called self-directed care where people with disabilities essentially become an employer. And so this allows a lot more control over the experiences that people are having inside their homes.
And I just wanna add to the previous one I heard learned that living independently, like having your own home is so critical to your wellness, and that home health care, and particularly self-directed care can help with that. And then one of the other key things that can be improved aside from transportation, is paying staff more.
Paying staff more will enable them, probably, to stay. And Danielle said it allows people to retain staff when people are paid more, and suggested that Medicaid it. The pay be dealt with through Medicaid, so that providers pass that money to staff and aids rather than retaining it for the company, and then, finally, that increasing respect between staff and client and client and staff are really critical ways, that the system can be improved.
And so, if anybody who is watching this right now is interested in getting in touch with any of these 3 amazing advocates, Diane, Danielle, or Jody, you can reach out to the Indiana disability, justice communications Queen, I mean coordinator Jody Michelle.
You can email her at indisabilityjustice@gmail.com, or you can go to our website and find us there at iINdisabilityJustice.org.
If you’re interested in learning more. Thank you so much.
For many, part of everyday life with a person with disabilities is needing access to support staff to help with daily needs. That may mean services such as in-home staff, known as a DSP or Direct Support Professional. It can be recreational therapy, community staff, or even respite care.
As a DSP myself, I see a lot of turnover in the staff that help those with disabilities succeed. One of the things that is upsetting to me is having had saff that do not know what they are getting themselves into. They do not realize how high demanding this type of job is and end up quitting, leaving myself and clients without the proper assistance needed.
One of the things I wish they had is special education training on how to be a proper DPS. This would benefit both the staff and the client. Training can include having a nursing license or being a CNA. There is a difference between a 24 hour setting and a non 24 hour setting. It would be helpful for staff to understand the differences. Better trained staff would help prevent violence against people with disabilities. It would also help the client feel more comfortable with the staff helping them. It would also help them improve their advocacy skills and build confidence within themselves.
The state does not understand or see what support staff goes through every day and what we do every day for our clients. Having the support from the state could go a long way and really help the staff and client by having a better understanding and benefical training program.
Domestic Violence Prevention, Disabilities, and Caregivers
In an effort to create a safe space to read about an uncomfortable topic, like domestic violence, I want to ask you to close your eyes for a moment and envision what it might take to eliminate violence. Take some deep calming breaths, in through the nose and out through the mouth, feeling your diaphragm expand as you fill with the good and contract as it expels the bad, and read on when ready…
Domestic Violence is a terrible thing that comes in many different forms; physical, emotional, spiritual, sexual, marital, parental, verbal, sensory, etc. It’s violence in the home, it’s violence at the hands of someone you trust, someone you rely on, someone you may love. In every relationship the potential for violence exists. It may come from the caregiver, it may come from the person receiving care, or it may come from both. Intentional domestic violence is easily recognizable as evil, but unintentional domestic violence is something else entirely, and potentially even more traumatizing as it is unexpected and uncontrolled. Both must be prevented.
How do we prevent domestic violence and reduce isolation? Through support, engagement, and open communication and creating safe spaces. No one should ever feel as though they are alone and have no one to talk to. If they are trying to speak up, no one should ever feel as though no one cares or no one is listening. People with disabilities, including conditions of aging that most will experience later in life, are among the most vulnerable to domestic violence. Our disabilities, if left unsupported through accommodation, can isolate us. It is through supported independence that this population is best equipped to prevent such violence before it occurs.
Disabilities can impact communication and emotional responses as much as they impact mobility, sensory experience, and functionality. Those closest to people with disabilities are often the most aware of how they have adapted to accommodate these challenges in a world that was not designed from the start to be accessible. Our loved ones are often the most capable in supporting our independence, including our ability to speak out about our own needs, including our own safety and treatment from others. Our friends, congregations, and close community members are often those most sensitive to our wants, desires, needs, limitations, and safety accessing social engagement. These people are not just our friends and family, they are our Caregivers, and their support helps us maintain our independence as active members of our families and community. Sometimes the people with the disabilities are the Caregivers too.
Fighting against isolation comes with most disabilities and conditions of aging. It is sometimes easiest to stay home, especially as the impacts of the disabilities and age progress; but the less engaged we are with our community, the more vulnerable we become. As our community shrinks, those closest to us must naturally provide additional support, or we adapt but take on more than we should ourselves, sometimes at physical risk. Regardless of what disability you have, the lack of social interaction takes an emotional toll, potentially leading to outbursts that can become violent themselves. Those who are providing support, sometimes the only person providing support, without respite care can easily become overwhelmed. Leading to potentially violent outbursts as well. The care relationship can become toxic.
Frustration leads to anger, anger leads to aggression, aggression leads to suffering. Someone who needs daily assistance with personal hygiene, being vulnerable to receive support from someone they love and trust, unintentionally becomes a victim of sexual assault because that person wiped or cleaned too aggressively. Someone who needs mobility assistance becomes the victim of physical abuse because the person assisting them unintentionally injures them by rushing, being rough, or not paying attention to their safety during a transfer. A loved one becomes the victim of unintended verbal abuse because the person with the disability’s frustration reaches a breaking point and there’s no one equipped to hear it. An aging immigrant who must rely on a visiting nurse who doesn’t speak their language fluently becomes a victim of neglect, suffering emotional abuse due to the barriers in communication and culture. Instances of unintended domestic violence, fueled by uncontrolled emotion, can have lasting traumatic impact on the people involved and their relationships going forward.
Getting Support, Removing Toxic Stress
Maintaining connection with a supportive community of Caregivers, including close family, is the best way to prevent this toxic care environment from developing, and provides support to guard against the violence if it begins to develop. In today’s world of pressing fast paced social and work demands it can be a challenge for those who want to help to make the time. Many people wind up isolated from their would-be caregivers for these reasons too, and don’t even speak up when they need help because they don’t want to be an inconvenience or a charity case. Ultimately this could lead to institutionalization, which opens a whole new door to potential structural or systemic violence.
However, many don’t know that if you are eligible for Medicaid Waiver services, there is a service that can help you establish a supportive network of Caregivers by providing compensation for the non-skilled services that they provide. Many people with disabilities and conditions of aging don’t apply for Medicaid Waiver services because they assume they won’t qualify without exploring it. Advocates Personal Care, an approved Medicaid Waiver service provider, is seeking to employ family and community Caregivers of Medicaid Waiver eligible people with disabilities and/or conditions of aging. Offering a starting wage of $13 an hour for services that they may already be providing to someone close to them. If someone is unsure if they qualify for Medicaid Waiver Services, or doesn’t know where to start, or what questions to ask, Advocates is able to assist with navigating that process.
Having paid Caregivers through Medicaid Waiver services helps people with disabilities and conditions of aging maintain their independence in their own homes by ensuring appropriate supportive care when needed. As the caregiver is receiving payment for the time that they are providing services, it becomes easier for the Caregiver to reduce work hours or sacrifice personal time if necessary. A Consumer of Medicaid Waiver services can have more than one paid family or community caregiver, allowing the supportive services to be shared by the Consumer’s community. Having paid Caregivers as employees of Advocates Personal Care allows for better coordination and engages the provider, Advocates, as oversight and another layer of protection in the event a care relationship becomes toxic.
Caregivers must clock-in and document their time, and Advocates Personal Care must follow-up to ensure the care provided is what the Consumer needs and wants, giving the Consumer the control over what services they are receiving and from whom. Advocates is able to provide non-skilled services to any Medicaid Waiver eligible person with disabilities or conditions of aging throughout the state of Indiana, as long as the Consumer has enough potential Family and Community Caregivers to ensure consistent care when needed, including backup if an expected Caregiver is unavailable.
Some examples of non-skilled services are meal planning & preparation, laundry & light housekeeping, grocery shopping & community-based errands, medication organization & reminders, socialization & safety, mobility & transfer assistance, assistance with hygiene, eating, and other activities of daily living. If you are a person with disabilities or a senior citizen who relies on support with these types of activities to maintain your independence in your home, or if you are providing this kind of supportive care to someone close to you who may be eligible for Medicaid Waiver Services, contact Advocates Personal Care to learn more.
Written by: Jeremy K. Warriner – Accessibility, Hospitality, & Outreach Consultant; Inspirational Speaker; CEO & Founder of Walking Spirit & Spirit Therapies, LLC.
Jeremy Warriner
Jeremy Warriner is an Indianapolis native, Black Belt in Shorei-Goju Ryu Karate, with a degree in Consumer and Family Sciences from Purdue University emphasizing in Hospitality and Tourism Management. He worked as an Operations Director and Assistant General Manager across multiple brands and markets in the Hospitality industry for over a decade. In 2005 Jeremy sustained severe burns in a car accident that required the amputations of both legs from above each knee. This traumatic event led Jeremy to redefine his path as he accepted his newly added identity as a person with disabilities. Whether walking on technologically advanced prosthetic legs or utilizing a wheelchair, Jeremy is an active member of his community, charter member of the international Rotary Club for World Disability Advocates, and founder of Walking Spirit & Spirit Therapies, LLC which provides Diversity, Equity, and Inclusion assessment, consulting, and training from a Disability Lens. Jeremy’s current project is adapting Karate to his disability. He can be reached through his website at https://www.walkingspirit.org, or by email at jeremy@walkingspirit.org.
