#cdpa

So much, kittens for the “Justice Agenda”.

Don't get me wrong. It has done some good, but lately, it seems like we can't go a month without hearing about another attack on the disability community, from New York State Governor Andrew Cuomo.

[Illustration of a drag queen in an elaborate wig (pink, orange, and yellows) and outfit (yellow and orange). She is sitting at a table (seen from the chest up) that has a blue tea cup that reads “What’s The Tea?” on it. Next to and slightly underneath the cup is a white napkin with black print that reads “with Anita Mya Rhites . The text around her reads “I am living for this new wig. What I am not living for is Cuomo’s attacks on disabled people!”] And let us not forget, that an attack on the disability community, is also an attack on every single marginalized community. After all, kittens you can be disabled and black, disabled and Muslim, disabled and an immigrant, disabled and queer and so on. 

[image description: Three Black and disabled folx (a non-binary person holding a cane, a woman sitting in a power wheelchair, and a woman sitting in a chair) looking seriously at the camera while a rainbow pride flag drapes on the wall behind them. Photo credit: Disabled And Here] And while I do believe that it is vital that we leave no oppressed group behind, especially in these times, fun fact, kittens: besides being fabulous and fierce, this queen, yours truly Ms. Anita Mya Rhites, is also disabled. And so, yes kittens. That means Andy, is also going, after queens, like me.

[an illustration of a drag queen Ms. Anita, not only revealing her full outfit - which is a very elaborate, colorful and couture dress, but also showing that she uses a stylish black cane to help her mobility, and that she is also disabled. The graphic reads “Ta-daaa!!!” and “Disabled drag queens represent!”] Now, the attacks have been many, but in this issue, kittens we're going to focus on CDPA aka Consumer Directed Personal Assistance program. Horribly boring name, kittens – I know, but besides creating over 100,000 jobs, this medicaid program empowers disabled queens like me to choose and hire who comes into my home and helps me stay the independent queen that I am. (Well... with some help). With traditional services, I don't get a choice, they send whoever is available, regardless if they speak the same language as you (which is kind of helpful when you need to communicate with each other), and regardless if they have experience in assisting someone with your needs. After all kittens, disabled people's needs do vary. But another reason I adore the CDPA is that, I do the hiring, which means I can make sure the people I hire, won't be queer and drag-phobic (nor ableist). The last thing I need kittens, is some homophobic, drag queen hating, ableist, shade throwing ignoramus, giving me crap for being my fabulous self, let alone in my own home. Can you imagine having to then be reliant on a person like that? I've been there, kittens and the thought of going back to traditional services... I don't even want to think about it. So, what's the tea? Why would Mr. Justice Agenda attack a program that is clearly fabulous for New York? Good question, kittens.

[Image Description: Illustration of Ms Anita from the eyes up. She is showing us her snazzy yellow business card, which has her name in a punk styled pink font and the words  in black at the bottom in a more handwritten styled font. “Fierce Drag Queen. Hard Hitting Journalist.” ] I sat down with Ms. Kendra Scalia (Consumer and Policy Analyst and fellow disabled activist) to find out why Cuomo is throwing so much visceral shade at disabled people, and what can be done to stop him. ANITA: Girl, what is going on? Does Cuomo just hate disabled people? Why is he so hell bent on destroying our services? KENDRA: It certainly feels like Cuomo and his administration are purposefully targeting the disability community. ANITA: Ugh, I'm almost afraid to ask, but let's hear it: What is the latest on the attacks on the CDPA? KENDRA: Basically the Department of Health wants to radically change the way they fund and reimburse the FI's or Fiscal Intermediaries. ANITA: FI's, kittens are basically like Go Between Agencies. I do the hiring, but the Go Betweens handle the paperwork, payroll, and in many cases help my peoples make the most of what help is available in our areas - which is needed, because that be can pretty complicated. On top of that, these agencies also create jobs for the community, so really it's a win-win for all.

KENDRA: Exactly. So basically this new policy says that these Go Between Agencies, as you put it, will be paid for their services on a per member per month basis, where the rate they are reimbursed will be determined by how many hours each member is authorized to receive. ANITA: Well, alright, I mean... is that a bad thing?

KENDRA: Well, the problem is that the new reimbursement rates are not sufficient to cover all costs of running the business, which includes rent and health benefits and salaries and so on. As a result, the majority of these Go Between Agencies will be forced to shut down, which will not only destroy jobs for the community...

ANITA: Ugh, as if that's what our state needs right now – less jobs. KENDRA: But would also damage, if not destroy the CDPA program as we know it in New York, making it harder on disabled and senior people to get the proper help they need. ANITA: Ugh, as if the state doesn't make it hard enough as it is.... So, how much does it cost to run a Go Between? KENDRA: Well, I mean of course it varies on location, but here's the weird thing about it: We don't know. Cuomo doesn't know. The Department of Health doesn't know.

[Image Description: White graphic with the words “How is that even a thing?” in a black handwritten font] ANITA: Um... what?! KENDRA: Yeah, there are no real numbers publicly available regarding current costs of running a Go Between Agency. And this is why the community has been calling on the Department of Health, to delay the changes until they, at the very least, have all the information on the actual costs. ANITA: What?! Why... and what?!

KENDRA: Anita, your eye is twitching... ANITA: I just...okay wait, so if they don't even have all the information, then how are they deciding on cuts to the program? KENDRA: Exactly. ANITA: Well wait, so if they get their way, what's gonna happen to the over 70,000 people who rely on the program? Have they even thought about that? KENDRA: Well, if the majority of Go Between agencies are forced to shut down, due to lack of proper funding, people will technically have the right to transfer to another Go Between, but that's only if there is another Go Between in their area, and assuming there's one in their area, that can take on this extra workload, while still running on reduced funding. We may not know the exact costs of running a Go Between, but the math is obvious. Less funding, more workload. Most of the Go Between agencies will be forced to shut down. ANITA: That is going to be a hot... mess. KENDRA: Yes and unfortunately, a lot of people will be booted from the program, and forced onto traditional home care or... into nursing homes. ANITA: Why would Cuomo and the DOH do that? Traditional services is having a hard enough time covering hours as it is? How do they think these same agencies will be able to take on all these extra cases? KENDRA: Oh yeah. There's actually a nationwide home care workforce shortage crisis happening right now. In fact, traditional agencies, in some areas of the state, currently rely on consumer enrollment in CDPA to cover part of their weekly care hours. Because agencies are unable to fully staff and fill shifts, they push the responsibility onto the consumer. These cuts will negatively impact traditional home care agencies, as they will have no other program to support their client’s needs as it becomes more challenging to hire quality caregivers.

ANITA: So, the cuts will shut down the majority of Go Betweens... what happens if Traditional agencies can't cope? What? Is the state just going to just ship the majority of us off into nursing homes and institutions - against our will, I might add? Even if they tried, where will we all go? As it is, there is already a huge waiting list for open beds. KENDRA: There are more than 70,000 people using CDPA today. It is impossible for all of those people to find a nursing home bed because New York State does not have that many nursing home beds open. The math simply doesn’t add up. If people can't get traditional services in their area, some consumers will have to rely on support through family willing to work for free or, for those who are lucky enough, private pay for some level of care. ANITA: Please. We all know, that is not an option for most people. Even if you do have family or friends in the area, people need to work. People need to make money to eat and pay rent. And Private Care? People have CDPAP via Medicaid which is like taking a vow of poverty. Who has money for that? KENDRA: Exactly. I mean unfortunately, if these cuts go through, a lot of disabled and senior New Yorkers will be forced to leave New York, running to any other state with CDPA. ANITA: But a lot us just can't get up and move to another state... KENDRA: I know. It is a bonafide mess. Sadly, a lot of people as a result, will die in their homes without the necessary daily care that keeps them healthy. ANITA: OMG, kittens. What the living hell? Meanwhile, I heard Cuomo and the Department of Health were telling people, that the cuts won't impact the quality of service? Are they just lying to the people or do they just really not understand how this program works? KENDRA: Anyone who knows the facts, knows that these changes are going to impact the disability and senior populations, not to mention the workers. How can it not? Many Go Between agencies have even told Cuomo and the DOH their concerns, but still the Department of Health continues to say that it is “not the intent" of the cuts to impact consumers or the integrity of the CDPA program. But how can they have good intent, when they don't even have all the information needed to make an educated decision? Anita, your eye is twitching again... ANITA: This is so exhausting...and the attacks... they just feel so relentless sometimes... I gotta take off my wig. This is just too damn much. KENDRA: Well, that's why while activism and taking action is important, so is doing self care.

[Image Description: An illustration of Anita who is looking very sad and drained. There are tears coming her left eye and she just looks drained. She has also removed her wig seen in previous illustrations, revealing her bald head.] ANITA: Is there even time for that? Aren't the changes to the program kicking in September? KENDRA: Well, that's if we don't stop it, and we can. That said, yes. There is time for self care. We must make time. We can't neglect our emotional health. Plus, how will we be able to fight if we are so burnt out that we can't even take action? ANITA: True. Well, that said, what are some ways people (inside and beyond our community) can take action? KENDRA: We must mobilize the community to get loud, get proud and get public! We must take this fight to #SaveCDPA to the streets with some old-fashioned protesting, letter writing to your local news outlets, and community conversations to educate your neighbors on CDPA and the devastation these unnecessary cuts will cause to disabled and senior New Yorkers!

[Image Description: White background graphic with text in a black handwritten styled font that reads “How To Take Action!” in larger text with smaller text on the side “Solidarity is fierce!” and “Yaaas Queen!”]

1.) You can sign up to join a Rapid Response Team. When Cuomo is scheduled to be in your area, you will be notified. This helps to easily coordinate a group of individuals to show up at Cuomo’s location to protest the cuts to CDPA.

2.) Join a Facebook group, such as CDPAP Watch Discussion Group. 3,) Join the conversations and share social media messaging by using #SaveCDPA. 4.) Share this interview 5.) Write blog posts about this. 6.) Make videos and post them online. 7.) Call Cuomo @ 518-474-8390 8.) Send him a message on Twitter @NYGovCuomo and via his website I know there is a lot of injustice going on in the world right now, but we can't let them do this to 70,000 people plus the workers! In the end, the people of New York, deserve better. ___

New York State Governor Andrew Cuomo's 75 million dollars in proposed cuts to the popular and much needed medicaid program CDPA isn't just misguided, it's also a dangerous attack on many oppressed communities. The following are 10 reasons why it is urgent and vital that all New York Senators, Representatives and Legislators speak out against the cuts. 1.) Attack on freedom and independence. Cuomo's plan to charge CDPA agencies (aka: FI's or Fiscal Intermediaries) a monthly fee per client, will force agencies to give the boot to many New Yorkers already using the program, and reject new applicants, as the CDPA agencies won't be able to afford the monthly fees to stay in business otherwise. Shouldn't all New Yorkers have the same access to this medicaid program instead of a chosen few? As a result, people will be forced to use Traditional Services, which means a higher number of disabled and elderly people being shipped off against their will into nursing homes and institutions, where care is a dehumanizing assembly line and there is a higher risk of abuse. As it is, traditional agencies often have problems covering the approved hours and meeting the needs of disabled and/or elderly New Yorkers, and now there will be an even greater demand.

2.) Attack on workers. Why is Cuomo so bent on destroying jobs? He gave billionaire Elon Musk of Tesla 750 million dollars to create 750 jobs, and yet if he gets his way, he could destroy the CDPA program which creates over 100,000 jobs for the state of New York.

[image description: a graphic with a black background and features a woman of color wearing a beret and slightly looking to the right. her face has a blue-purple tint to it. Behind her red is a red rectangle, and to the left of her is a large white exclamation mark. The text (above her head) reads "activist. mother. new yorker." Under her chin reads "Cuomo! Hands off our jobs! Workers of the CDPA!"] 3.) Attack on privacy. Shouldn't all New Yorkers have a say in who comes into their homes? One of the many unique benefits of the CDPA is that disabled and elderly New Yorkers are empowered to do the hiring, so they can choose who comes into their homes, who assists them with personal and intimate things like bathing, getting dressed and eating. Shouldn't New Yorkers be the ones who decides who touches their body? Who they rely on for meals?

4.) Attack on immigrants & employment opportunities. One of the major demographics working in the healthcare industry as a PCA (or Personal Care Attendant) are immigrants. In some cases, such as NYC, a worker has the opportunity to make more money with CDPA than traditional services up to 17 dollars an hour. There has been cases where some traditional agencies will take advantage of immigrant workers and tell them that they can't make a better wage than what the agency is paying them, which is not always the case. Furthermore, with CDPA, the worker and client can meet up and decide if they are compatible, whereas with traditional services, an agency will send a worker out for a job, even if they do not speak the same language as the client, which puts both parties in harm's way. Lastly, by attacking the CDPA program, Cuomo is going after job opportunities for people who are just starting out in this country, and want to support themselves and their families with proper and gainful employment.

5.) Attack on the poor, disabled and the elderly. While Cuomo's justice agenda is making some much needed social justice changes for New York, we can not ignore that his budget cuts are nothing more than attacks on the poor, disabled and elderly communities. He claims there isn't enough money to fund certain programs, meanwhile miraculously finding money for corporations. And now he's going after medicaid programs such as the CDPA, which empowers people to stay in their homes and their chosen community. We are New Yorkers too. Where is our justice?

[image description: Graphic with pink background, has an 80's vibe. To the right is a woman making a gasping / oh my god expression. The text reads "OMG! Governor Cuomo gave Elon Musk 750 million to create 750 jobs, but wants to cut 75 million from CDPA (a medicaid program that serves poor, elderly & disabled new yorkers) & creates over 100,000 jobs for the state." In the upper right hand corner "that is not justice"] 6.) Attack on safety. A disabled person with autism, a survivor of a stroke, a person with multiple sclerosis, a person with cancer, all have very different needs to keep them safe and in an environment where they can thrive and lead a full life at home. In many cases, disabled and/or elderly people also rely on home services, so they can go to work. With CDPA, New Yorkers are empowered to hire people who can give them the individualized care that they need, not just a PCA who is a total stranger that happens to be available for the shift, but has no experience caring for someone with said needs, which can result in injury and further demise of health.

7.) Attack on New York families. With CDPA a person can hire a friend/family member which not only gives them the care they need with someone they are comfortable with, but won't be a financial strain as the family member or friend will be getting compensated for their work. And let's not forget that if a elderly and/or disabled person is unable to do their own hiring, a family member can be made a representative, thus giving the family more say in their loved one's care.

8.) Attacks on LGBTQ+ people (and other oppressed demographics who may face social discrimination). When you're gay, disabled and in need of home services (as an example), having the option to hire (and fire) someone, means not having to deal with homophobia from your PCAs. Being in a situation where you are reliant on the very person who is discriminating against you, is a horrible place to be, but with traditional services, you just don't get a choice in who they send. Even if it's a temporary situation, it's distressing to be discriminated against in your home, and no one should be forced to be closeted just to get proper and safe care.

9.) Attack on the future of CDPA. If Cuomo succeeds in destroying the program, it could very well be the beginning of the end for CDPA in other states who will follow suit. “New York got away with it, so why can't we?”

[image description: graphic has a black background. the top and bottom are frost & icicles. to the left is a photo of new york state governor andrew cuomo in a suit, in mid speech. to the right is the following text "Is Cuomo The New Polar Vortex? 'Cus the way he's treating disabled people is cold. Next to the word cold is the blue & white wheelchair symbol. On the bottom reads "Don't disabled new yorkers deserve justice too?] 10.) Attacks on people who use medical marijuana. Drug tests unfairly group hard drugs like heroin, meth and cocaine with medicinal drugs like marijuana in the same category, and failing a drug test can mean the loss of employment opportunities, for many New Yorkers, including disabled people who can work, but require the use of marijuana, as they have not found proper pain relief through pharmaceutical means. With CDPA, the client can hire someone who (as an example) uses marijuana for medicinal reasons, long as the client writes a letter saying you are aware of the results and are okay with it. That same person who “fails” their drug tests, would not be able to get a job with traditional agencies.

Disabled people are one of many marginalized communities in their own right. In fact, within every oppressed demographic, disabled people exist. It is time (and especially in this political climate) that we make it politically and socially unacceptable to throw disabled people under the bus. Disabled people deserve justice too, and that is why I ask you to oppose/speak out against these proposed cuts.

Follow #SaveCDPA on social media. Call Cuomo at 518-474-8390 and tell him Hands Off the CDPA. Don’t attack a program that creates over 100,000 jobs for New York State and gives the freedom of choice to over 70,000 New Yorkers.

In 2018, my body developed Dysphagia (a condition where easily swallowing food and water, is not really an option.) Meanwhile, my brain, apparently feeling like the first one needed a friend, grew a second brain cyst. As a result, I became mostly bed bound and spent a good portion of my summer in a hospital and then eventually in a rehab/nursing home.

When I was in these environments, I only got worse. Both places struggled to accommodate my particular dietary needs (in fact I lost even more weight while there), they had absolutely zero training in regard to processing disorders (as my brain is on the spectrum), and refused to let me use my motorized wheelchair with spine support (which my spine needs), forcing me to either stay in bed all day or attempt to use their manual wheelchair which was harmful to my spine (as it lacked the spine support that it requires), and was utterly exhausting to my muscles. It was to the point where several times, I went from mostly bed bound to totally bed bound. Furthermore, in the 3 weeks that I was in the nursing home, I received a total of two showers. Sometimes I got a partial “sponge bath” where they hastily “washed” maybe (at best) 1/5th of your body, but never washed the soap off which really irritated your skin. Thankfully, I transitioned from the nursing home to my apartment, as I knew that with proper services, I could live in my home and in my chosen community. That's when I started to apply for medicaid and specifically CDPA, a program that would allow me to choose who I hire and work with as my PCA (or personal care attendant).

[a photo of myself in my hospital bed, post voting on Election Day. It wore me out, but with the assistance of my CDPA PCA, I was able to do it. Image of a disabled woman with spastic arms holding up a “I Voted” sticker, as she lays on her hospital bed with purple sheets. She is wearing headphones to reduce the noise.] The word in the disability community was that CDPA was the way to go, and it makes sense. After all, if you must rely on people to feed and bathe you, wouldn't you want a say in who does that? Wouldn't you feel safer interviewing the candidates beforehand and having a voice in who is allowed into your home? Having input as to who is in charge of your health? With traditional services, you do not have a say in any of this. I know this because at one point, while in the process of setting up CDPA, due to bureaucratic hoopla, I was somewhat forced into traditional services (it was either that or have them close my case and re-apply for Medicaid all over again - which was not much of an option as the process takes so long as it is).

[a photo of myself as The Woman’s March before the setback. I am wearing a cat hat and a holding a protest sign that reads “Disabled People Don’t Want Your Pity. We Just Want Out Rights.”] In addition to basically having to let total strangers into my home, all the PCAs that the agency sent to me, were not fluent in English, to the point where I could not communicate my needs (and they could not communicate theirs). I once asked if I could please have a popsicle. I was brought an apple. I said “no, no, it's in the freezer.” but as much as this person tried, they did not know the word. But it went beyond that. Because the PCAs and I could not fully communicate with each other, they didn't understand that they needed to clean the humidifier daily (which was essential as it kept the dysphagia at bay, and helped me with my breathing). As a result, not only did they partially damage the humidifier (due to a lack of cleaning), but my dysphagia got worse. At one point, I actually started to choke on my food, but because of the communication barrier, the weekend PCA did not understand what was happening. And cognitive exercises? Something I need on a daily basis (as I am prone to cognitive down slide) - that just was not happening. In fact, similar to when I was at the nursing home/hospital, the people did not understand neurodivergency, and cognitively I only got worse. But probably one of the most harrowing experiences, was when a friend of mine was over and I decided now was a good time to try a shower with the weekday PCA, who at this point, I did not totally feel safe with. How can I communicate my rules about consent if there was a language barrier between us? How could I feel safe when she would sometimes think it was funny when my speech impediment was in effect (as if it impacted my credibility. It does not.) On top of that, with my processing disorder, where I can not process information in real time, I could not always process what was happening to me and communicate my needs in real time. But it had been weeks since I had a shower, (unlike when I have CDPA, where showers and proper sponge baths happen on a regular basis) and I figured with my friend here, she could help advocate if necessary. And thank god, she was there! There I was in the shower, and the PCA was scrubbing my skin so harshly, that it was physically painful. It was so overwhelming on a sensory level and traumatic! Even my friend, seeing what was happening said “Why are you being so rough with her?!” and told her to be more gentle, but she didn't understand nor stop. I cried so hard when it was done and refused to shower till I was able to transition back to CDPA.

[original artwork that I made at the time. I felt so frustrated and powerless - especially since I knew if I could get back on CDPA, it wouldn’t be like this. original artwork showing an angry face ] But (in my experience) that is traditional services. I can try to request another person, but they sent me three people within a short period of time, and while some were nicer than others, this was pretty much the standard. With CDPA, I am in charge of the hiring process. I can hire someone based on their experience and compatibility. I can ask about what are their views on disability and not hire someone who is condescending and/or rough with me. With CDPA you can even hire a family member or friend, who understands your needs but won’t go bankrupt in the process of caring for you, because they will get paid to do so. With traditional services, I have no say who I get. With traditional services, they don't send you someone based on your needs. They send you a person – anyone who is available to cover that shift. Thankfully, after the people that I hired were fully registered, I was able to transition back to CDPA. I now have two lovely PCAs who have experience with people with processing disorders, who are creative and work with me to do cognitive exercises. And because in NYC, they are paid more than the traditional service PCAs, they are happier and put more effort into their work. As a result, I feel safe again. I can relax again. I can go back to focusing on getting stronger, and doing things that bring me joy, so I can improve my standard of living, so I can lead a full and fulfilling life. In my experience, I would not be able to do that with traditional services, where my energy was put towards just barely getting by.

[a photo of myself laying in my hospital bed with purple sheets. I am wearing a narwhal adult onesie, and reading “Howl” by Allen Ginsberg.] So you might imagine the near panic and heartbreak that I felt when I read that “ Governor Cuomo is looking to end the Consumer Directed Personal Assistance (CDPA) program as we know it today. Worse yet, his attacks on the program go so far as putting the entire fate of the program in the hands of Washington, now going on a month of their shutdown.“ After taking a deep breath, I asked Gregg Beratan from CDRNYS what exactly are the details of this change, and what can the people can do about it: “Long story short: This budget will repeal the law that made CDPA and replace it with a stripped down version that eliminates 9 out of every 10 FIs [fiscal intermediaries] in the state. The ultimate goal is to move to ONE FI for all of New York. So if the agency is one of the 10% that survives initially, they will not be around long." This is a total nightmare. One of the many benefits of CDPA, is that you have the option to shop around and get the best living wage (as different FI’s or fiscal intermediaries offer varying wages) for the people you hire. Having the ability to offer a proper wage, isn’t just a matter of worker solidarity (though that is most definitely part of it.) It is far easier to keep a good worker when they can financially support themselves on the pay they are given. A low wage means more employee turn over and more disgruntled workers, which increases the risk of abuse. Gregg went on to explain that if things move forward as Cuomo plans, and “If your FI opened its doors after January 1, 2012 or is not an independent living center it will be out of business immediately.” The FI that I have chosen fits into this category! Does Cuomo not understand how CDPA works? Does he not care about disabled New Yorkers & the people that work for them? “If the federal government does not approve the new version of this law, there will be no CDPA at all. Even if the program gets through Washington, in an unprecedented move, the new law gives the Commissioner of Health absolute power in determining it's continued existence. The benefit could stop immediately at any time if they do not think the reimbursement they are getting is "adequate." Jesus Christ!

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Five new state omnibus privacy laws have been passed and will go into effect in 2023. Organizations should review their privacy practices and prepare for compliance with these new privacy laws. What’s Happening? While the US currently does not have a federal omnibus privacy law, states are beginning to pass privacy laws to address the processing of personal data. While California is the first…

POP QUIZ: Which marginalized group’s freedom is New York State Governor Andrew Cuomo viciously attacking? Is it... A.) Immigrants B.) LGBTQ+ C.) The Poor D.) Disabled People E.) People Of Color F.) All of the above + more

SHARE if you think @NYGovCuomo 's #2019JusticeAgenda should mean #JusticeForALL New Yorkers!

#CDPA gives disabled people in need (like me) the freedom to CHOOSE who comes into our homes & assists us w/ really personal things (bathing, eating etc). It works & yet he's attacking it.