The Importance of Home Healthcare with Jody, Danielle, and Diane

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. 

Dark Night of the Soul

The words below are the written words of Stephanie Winn’s poe “Dark Night of the Soul”. The video has her spoken words.

*Please Note: IDJ does not align with any one religion, faith, or belief system. Instead, we offer a platform where people with disabilities can express their diverse experiences.

Dark Night of the Soul

1 decade. It’s been 1 decade since my body turned on me, taking freedom and sanity in 1 fell swoop. Initiating a loop of nausea, dizziness, and headaches that takes my life and makes it something I do not recognize. The cries that emit from my soul are ragged and raw. I crawl to the bathroom, room spinning around, the ground no longer something I can trust. And all I know is I must find answers and a cure, but 10 year in I am no longer sure that they exist.

 

I am told to resist the dark hole that comes in these moments. Emotions take me to my end. But I do not descend. I wait for the recovering, the days of relief that make the suffering fade and my eyes are again able to see the beauty that is my life. When I’ve been stuck in bed and am now able to rise, the lies of sickness become instantly clear. My fear of lost relationships slips under the sea of love and support my friends and family always show me. I know the guilt of missing out is pointless as these memories are eclipsed by the constancy of my love. And my love is deep. 

 

One of the gifts reaped from the pain is a gratefulness that seeps into my very being for all of the daily scenes. Like the sound of my daughter’s laughs, the warmth of a full bubble bath, my husband’s kiss on my lips, and the delicious salt of my favorite chips. These moments are not lost on me. 

 

But, I am greedy. I want only the good all the time. This needy body of mine makes me sick as I tick off another day spent in the grip of chronic illness. So, I turn to my Maker, my Father, Creator. 

 

The same hands that hold me, molded me. Did they make a mistake or are they unable to take this away? I pray and I beg. I negotiate. Offer up 1 fate in exchange for another. Let’s make a deal. If you heal me, I’ll serve you forever. Never ask for anything more. 

 

But, deep in my core I know, the answer may be no or not yet. And if so, can I let go and even rejoice as I listen for His still, soft voice?

 

Oh daughter, this was not my plan, not the work of my hands. I hear your cries and I touch your soul. The miracle just looks different than you thought. I have fought for you each and every day in the spiritual battle you do not see. The sea is not deep enough to hold my love for you. I cover you with my wing and sing over you with rejoicing. I see your pain and I do not turn away. I stay and I will fill your cup. I will hold you up until this world passes into the next and you rest in me. 

 

Until then, it is enough that He who calmed the sea, resides in me. Bringing peace in the storm and light in the darkest night of my soul.

About the Author:

Stephanie Winn attended Ball State University and graduated with a Master’s degree in Speech language pathology. She has worked as a speech therapist for the last 10 years in nursing homes, home care, and the school setting. She is currently on medical leave due to her struggle with vestibular migraines and hashimoto’s thyroiditis. She is actively involved in Urban Light Community Church in Muncie, Indiana. Stephanie is happily married to Seth and they have 2 daughters, Zayla (age 10) and Aria (age 8). Stephanie enjoys spending time with her friends and family, reading, and going for walks.

In this picture, Stephanie Winn has long brownish blonde hair, wearing a light blue, button-up, long sleeved shirt.

 

 

 

 

 

 

 

 

Ableism and Parenting

About the author:

Hi! My name is Megan Deahl! I am a wife, momma, writer, disability advocate, animal lover, and avid crafter. Do you have questions about ableism? Please feel free to email me at deahldisabilityactivism@gmail.com. We can only eradicate ableism through education.

This is a photo of Megan and her family. Megan is in a power chair and is leaning into Nate, her husband who is in his power chair. Alister, their son is sitting on Nate's shoulders. Megan is wearing an orange dress. Nate and Alister are wearing red flannel skirts and jeans. All of them have big smiles. They are outside in front of colorful trees.
This is a photo of Megan and her family. Megan is in a power chair and is leaning into Nate, her husband who is in his power chair. Alister, their son is sitting on Nate’s shoulders. Megan is wearing an orange dress. Nate and Alister are wearing red flannel skirts and jeans. All of them have big smiles. They are outside in front of colorful trees.

From Today to Service… Other Above Self, From Oath to Death

Content caution: discussion of service to the United States as a veteran

From Today to Service… Other Above Self, From Oath to Death

I returned from a deployment to Afghanistan in 2010, yet there is a day in 2017 which has persisted in my mind with more fervor than any experience I had on deployment.  It was during the summer while I was on the road driving between appointments; I had to pull over.  That day was hard. Nothing prompted it, nothing startled me, and nothing could stop it once it started, at least nothing I had been able to figured out up to that point.  The flashback was as follows:

“Still getting my bearings of what my new position would be and the command structure I was going to fall under, the front gate to my base was attacked, my only solace was the Kevlar around me, the bunker I was in and the M-16 I carried.  I hadn’t even met the people I was going to be working with yet.  I was 25 years old when I sat down with a lawyer to draft my will… the gravity of my voluntary act finally sinking in. I turned 26 before I deployed… “Would I make it to 27?” crossed my mind more than I can count; and it was only day 3 of more than 270 left.”

By in large, my deployment was moderately uneventful save for several incidents: but this is not about them; this is about that day in 2017… and Today, and every day for that matter.

The thoughts and feelings never go away.  The memories and stories of people you knew never leave you.  The acts of honor, valor, heroism you saw or heard follow you.  There are countless other nuances and seemingly insignificant details of normally routine, often benign duties which craft the entirety of one’s memories.  What is the hardest for me, more often than not, is what all of it stood for and what it means to serve.  Forget the hate, the pop culture, the politicians, the money, the reasons why, the facts, the lies… NONE of it makes a difference.  Our Brother’s and Sister’s make the difference, Our ideals matter, Our values are significant… Our heritage is why we are proud.

When a fallen military member is laid to rest, a flag is presented to the next of kin…

“On behalf of the President of the United States, the [branch of service] and a grateful nation, please accept this flag as a symbol of our appreciation for your son’s / daughter’s / husband’s / wife’s honorable and faithful service and sacrifice.”

A grateful nation… many in society have forgotten how to act as part of a grateful nation.  Mass social media perverts these stories and glorifies rebellion, dishonor, and disrespect.  While these stories are not really the highlight of our society, the preservation of our Constitution (for which I fought) the First Amendment being part of it, allows for personal opinion.

Upon returning, I kept focusing on being productive, keeping my mind occupied, pushing all the bad stuff out.  Maybe that’s why my processing of deployment didn’t start until 6 years after getting back.  Now I deal with this when it comes up. I see my wife and family and love where my life has been to get me here.  I’m very proud of my service and continue to give myself in service to them, other veterans and my community.

However, when days like that happen… It’s very hard… you won’t know I’m going through it.  You don’t know I struggle to see my computer screen through the tears.  You don’t notice me pull to the side of the road because I forgot what I was doing or where I was headed.  You don’t see me avoid crowds.  You don’t see my head on a swivel.  You don’t see me hide my red face to avoid questions or sympathy.  I don’t want sympathy.  I don’t want to be known for my ailment.  I want to be known and recognized for my work, not for how my past affects me.  You don’t know what it means to be free the way a Veteran knows.  You don’t know the cost of keeping you free… you don’t know how we still pay the price long after returning for you to enjoy the liberties available to you.  You don’t know I would do it all again. You don’t know I would still die to protect you.

Only those who serve can truly understand this next quote:

“For those that will fight for it…FREEDOM …has a flavor the protected shall never know.” – L/Cpl Edwin L. “Tim” Craft, B Co 3rd AT’s, Khe Sanh Combat Base, February, 1968

Today happens, tomorrow will be better; but is that really how we are meant to live?  I know you can only take it a day at time when you’re dealing with your past, but there has to be more… Purpose does exist, so how do we find it?  How can we get our dignity back?

The story above is an illustration of the listless mental anguish which remains hidden from an ignorant society. The burden we carry so others may live in peace.  What follows is my own personal journey to find that meaning and interpret my purpose.  The days may have gone by, the past continues to get further away, however, there is one thing – one feeling – which never escapes; one which will never find peace – “Honor”

“I do solemnly swear that I will support and defend The Constitution of The United States…”

This one statement alone, binds us to a life of service.  Oh, what little understanding we have of this phrase when we first commit to it on day one.  As our duty time passes, we gain an ever-increasing understanding of what we’ve been called to do.  It is in Article I of the Military Code of Conduct where one understands better the first line of our Oath;

“… guard my Country and our way of life. I am prepared to give my life in their defense.”

But what truly is ‘our way of life?’  One need only look to our Declaration of Independence – our way of LIFE endowed to us, the individual LIBERTY [and responsibility] to be accountable for our own decisions as we journey on our PURSUIT OF HAPPINESS.  This description also embodies Article VI of the Code of Conduct;

“… I am an American, fighting for freedom, responsible for my actions, and dedicated to the principles which made my country free… “

We come to live and breathe this sense of purpose, to fulfill a mission, to protect America and her citizens from all enemies, foreign and domestic – this is our Honor, we were never asked, we never question, we no longer know any other way.  So when our time comes to trudge forward and pass on this duty to those who have and will come after us, we entrust them, we pity them because we know the burden they take, we are proud to call them family; but what of us?

When our requirements are now to assimilate as a civilian again, society expects us to ‘just go back to the way things were before you joined.’  Let me explain the absurdity of this suggestion – When I joined, I was 17 years old, not even out of high school when I signed papers and took the Oath for the first time.  The majority of our enlisted experience the same situation – to make this suggestion knowing what we know, doing the things we’ve done, and seeing the things we’ve seen (good and bad), is the most misunderstood, unrealistic, and wretched expectation of our Veterans.

“I can’t speak for all Veterans, but I can share my story in the hope it inspires others to not be defined by their past, and take ownership of the present to shape the future they are destined to manifest.”

Leaving the service is a struggle which cannot be explained.  I was part of something so big, entrenched in the corners of our globe, a cog in the greatest defense machine the world has ever known, fighting against the terror which edited our world forever on that fateful date in September… and just like that, I was done.  Where would I find that mission to be a part?  What vision could motivate me as I once was?  What greater purpose did I now serve?

“The only thing worse than being blind is having sight but no vision.” – Helen Keller.

After going through the motions of what I surmised was expected of me, I by sheer happenstance tumbled into the world of philanthropy.  I began by helping teens overcome their addictions and coached them towards deciding a better life for themselves.  Not aware of the gravity encountered in that line of work, I was also ethically tested.  Prior to my southern excursion, I too had made a poor decision when returning from a deployment, landing me on the wrong side of the courtroom; for almost two years I struggled to keep my head above water.

“Character is how others would describe you, Integrity is who you really are when others aren’t looking – strive to be better than the way people describe you.”

Don’t be afraid to walk away from a bad situation you have no control over.  Doing so helped define the next ten years of my life.  Nearing homelessness and holding my pride while I walked into that Martin County United Way in only shorts, t-shirt and flip-flops, I met someone with a passion fueled by the thousands of people she undoubtedly helped in her career.  Her dedication was radiant and easily transferable; she became the leader who would mold me into a new mission, who would instill in me the greater purpose I so desperately had been seeking – she saw the best in me when I felt I was at my worst, her name was Carol.  The greatest leaders bring out the best in others – I’m not sure she knows just what she is responsible for, but I’ll forever be grateful for the opportunity she gave me to work for, and learn from her.

While serving my communities, unbeknownst to me, a greater purpose was creeping in – one which I believe we are all intended to ultimately focus on and fulfill – but I digress.  For the last ten years, I have dedicated my work to improving the lives of those less fortunate in our society.  With an obvious affinity for working with Veterans, I became a Legacy Life Member of the VFW and now hold an officer position at a local post.  My experiences culminated in being selected as the Executive Director for a newly formed nonprofit, My 22 Veterans, aimed at reducing Veteran suicide.

After ten years in non-profit support work, I have begun shifting to my ultimate purpose.  I was built to serve – helping to improve the lives of those less fortunate, especially Veterans – but my ultimate Mission is to look after and provide for my family.  Every decision I make is to improve our family – this is my Honor – cherishing, protecting, and nourishing the gifts our Ultimate Commander in Chief has blessed me with.  By serving them, I serve him.

“As for me and my house, we will serve the Lord.” – Joshua 24:15

Service comes in many ways and we each find our own purpose in our own time.  And while it may take time after leaving the military, the best purpose comes from those you keep in your company and those you get the fortune to build a life with.

By Marco A. Cuevas, USN Veteran (OEF ’09-’10)
JR My 22, Inc., Executive Director