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. 

SAAM Sexual Assault Awareness Month 2023

Sexual Assault Awareness Month 2023. Order your resource kit today at https://bit.ly/DJSAAM23

It is sexual assault awareness month, so let’s talk about prevention! We have curated various tools and resources from the Hub and our partners for you to use to shape your prevention strategies with people with disabilities in your local community, and with current, or future stakeholders. 

Our intention is that this resource kit makes it easier for preventionists and advocates to design accessible violence prevention strategies to create structural and environmental impact led by people with disabilities. We invite you to dive in and enjoy this prevention resource kit brought to you by Indiana Disability Justice (IDJ). Get your resource kit now!

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Structural Ableism by Lee Goldberg

a person standing before hurdles
A person standing before hurdles.
Lee Goldberg’s Structural Ableism Essay Audio [transcript below]

I have several non-apparent disabilities which makes me more apt to experience Systemic Ableism because when people don’t see my disabilities they assume that I can do whatever society wants or what other non-disabled people in society can do. It is like judging the book by its cover only the cover looks normal when it isn’t.

The definition of Systemic Ableism is also known as institutional ableism which includes the physical barriers, policies, laws, regulations, and practices that exclude people with disabilities from full participation and equal opportunity.

I can give you examples that I have personally experienced and still currently experiencing of Systemic Ableism from the policies and regulations, the exclusionary practices, and the physical barriers angle.

The physical barriers that I am currently dealing with involves the use of facemasks by other people during the pandemic. Their facemasks prevent me from being able to understand what someone else is trying to say to me. I depend on lip reading as I am deaf. No one is willing to lower their facemasks just below their chin for the few seconds that it takes them to say a few sentences nor are the healthcare organizations are willing to provide their staff who deal with the public with clear facemasks.

My primary care doctor’s office is one of the worst offenders, and they are part of the Mass General Brigham medical organization in Boston. I stay with them because I have a really awesome primary care doctor and I would be dealing with this issue no matter where I go. I can’t tell you how rude people are when I carry around my deaf sign that says, “I’m deaf please remove your facemask so I can lip read, Thank You.” People come from around the world to get medical care at the Mass General Brigham. Their IT dept will not allow their own health care providers to have the ability to toggle their work Zoom accounts that they use for telemedicine visits which allows them to enable the closed captioning option. The healthcare providers have to go through the process of booking a CART (Communication Access Realtime Translation Services) person when there is already a shortage of CART people.

If their IT dept would allow their medical providers the option of enabling the zoom closed captioning, this would eliminate the extra time and effort of getting a CART person. I emailed each of my healthcare providers that I see on Zoom with a Zoom closed captioning cheat sheet on how to enable the Zoom closed caption option. The answer I get from each of them is that the Mass General Brigham IT dept doesn’t allow them to toggle their work Zoom accounts. This is an example of a barrier and a policy version of systemic ableism that is happening now by a world class healthcare organization.

Another systemic ableism is a deaf issue I currently experience is the inability to move the closed captioning placement on my own TV screen when I am watching a TV show. I know that I am not alone about this issue because I have read the comments written online by other deaf people who are frustrated with the same thing. I want the ability to be able to move the placement of the captioning to any part of my TV screen. Currently, only the TV stations can decide on the closed captioning placement on all TV screens and some of them put it in the middle of the TV screen which blocks out the show that I’m trying to watch. It’s very annoying.

Another Systemic Ableism issue that really gets me upset is that the SSA (Social Security Administration) has a system of policies and regulations and continues their discriminatory practices within their SSDI (Social Security Disability Insurance) program to this current day. This discrimination practices discriminates between the blind and all of the rest of the disabilities in terms how much the 2 disability groups can earn per month before losing their monthly SSDI income. 

For many decades and still to this day, blind people can earn an extra $990+ per month when all of rest of the disabilities cannot before they lose their monthly SSDI income. This is called SGA also known as substantial gainful activity. I have asked benefits trainers, policy makers and advocates how come this SGA discrimination still exists to this day. The answer I get is because blind people had a really good lobby and they got congress in the 1970’s and early 1980’s to write and pass legal and regulatory policies allowing this to happen. 

This SGA discrimination is another example of the legal, regulatory and policy aspect of Systemic Ableism all combined within one action. This is a major reason why most nonblind people including myself who collect SSDI disability are condemned to a life of poverty and get penalized for trying to do part time work. I can’t work more than 20 hours per week due to my various non apparent disabilities. I have the skill sets that puts me above the current nonblind SSDI SGA level.

Finally, another federal program that is administered by the Federal government in partnership with the states is Medicaid. Most people who have disabilities have Medicaid only because they don’t have the required employment quarters to be eligible for SSDI and Medicare. Medicaid is ripe with Systemic Ableism built into the structure of its program and the way it is administered. It limits where one can go, what type of healthcare they can get and the lack of access to health care due to its extremely low reimbursement rates to healthcare providers. 

People with disabilities have trouble accessing specialized care related to their type of disability such as Mental Health or specialized care that is related to their physical disability such as Cerebral Palsy, etc. because the doctors or hospitals will not accept the extremely low Medicaid reimbursements rates. Doing the unpaid extra time and administrative work that many people on Medicaid needs, is not reimbursable by Medicaid. It takes extra time to see and care for a person with a disability.

People with disabilities are often limited to going to the lesser quality hospitals and doctors because of the Systemic Ableism that is built into the Medicaid program. This causes people with disabilities to get lesser quality and standard of physical medical and mental health care. This difference in the quality and access to care makes it extremely hard for people with disabilities to live their public and private lives and to participate in society. This impacts all the major diseases categories across the board for people with disabilities who have Medicaid only whether its cancer or diabetes etc.

I hope my presentation gives you some insight into what Systemic Ableism is and how it permeates throughout society and how its entrenched in our daily lives most people don’t even realize it. This is parallel to what the black people in our country are saying about systemic and institutional racial discrimination.

Thank You,

Lee Goldberg

You can email me at leegoldberg@rcn.com.

ABOUT THE AUTHOR: Lee Goldberg

This is a headshot of Lee’s orange cat Linus.

I am a staunch advocate for the mental health peer movement. I have been involved since the early 1990’s. I started out my advocacy days working with Pat Deegan helping bring mental health advocacy into an independent living program. Pat provided me with the foundational knowledge about mental health and introduced me to the early days of the peer advocacy movement. From there, I worked in mental health in different direct care roles ranging from employment services to outreach supported services as a Peer Specialist. I have worked in direct mental health care for 30 years while serving on many statewide committees advocating for changes in the way mental health services are provided in Massachusetts.

Since the pandemic I have left direct care and will be training as a Behavioral Health medical coder. I plan on advocating for certified peer specialists to have their own behavioral health codes so they can bill both the public and employer-based insurance. Currently in some states peer services can bill Medicaid but not in all, they also can’t bill Medicare or employer-based insurance which is why there are no peer services currently for people who have those insurances.

I live in an apartment adjacent to the city of Boston with my orange cat Linus. Linus is 9 years old, and he is the love of my life. I enjoy going to local festivals and having quiet dinners with my friends.

Rise: A Sculpture Created by Tina A

This is a sculpture of a phoenix rising from the ashes. The red and yellowbird has massive wings. It looks. Proud and ready to face the next challenge!
This is the sideview of the phoenix, which gives another view of the massive wrings.

SCULPTURE TITLE: Rise

ARTIST: Tina A.

MATERIALS: Acrylic on Ceramic