#personal attendants

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. ___