New York State’s recently passed 2024-2025 budget included a number of changes aimed at the disability community. However, one change that did not pass during budget deliberations was the creation of “pharmacy assistants” in long-term care facilities. Nursing associations were concerned about the impact this would have on recruiting and retaining nurses. However, the disability community has a slightly different concern.
This week on Disabilities Beat, we feature excerpts from our recently aired hour-long special on the New York State budget. Click here to listen to the full episode. Our expert panel discusses why the state sought to create this position, the potential risks of drug restraint and seclusion, the need for a long-term solution to the nursing shortage, and concerns about including people with disabilities in budget decisions.
Plain Language Explanation: The creation of the “pharmaceutical assistant” position did not pass in the budget. This change meant that a new position called a “pharmaceutical assistant” would be created in long-term care facilities. This “pharmaceutical assistant” can administer medications to patients under the supervision of a nurse. Medications are typically provided directly by nurses. The New York State Nurses Association opposed this as it would make it more difficult to find and keep nurses in long-term facilities. Although this did not pass in the budget, Todd explains that the state likely tried to create this position to save money on nursing staff. Todd, Stephanie, Max, and Craig express concern about untrained staff dispensing medications in long-term facilities. They worry that using medications could lead to people being restrained or isolated against their will. Stephanie emphasizes the importance of a long-term solution to address the nursing shortage. Craig and Todd emphasize the importance of including people with disabilities in budget decisions.
Transcript
Emile Watkins: Hello, I’m Emile Watkins, WBFO Disability Correspondent.
This month, we bring you highlights from the recently passed New York State 2024-2025 Budget. I recently spoke with a group of experts about concerns about a controversial proposal, which did not pass, to install “medication aides” in long-term care facilities. This interview has been edited for length and clarity. However, the full roundtable version of this interview, including many more perspectives and additional aspects of the budget, is available on our website at wbfo dot org.
Emile Watkins: First, I want to introduce Todd Vaarwerk from Western New York Independent Living.
Todd Verwerk: I’m the chief policy officer for Western New York Independent Living. I have a developmental disability and have worked in the independent living field for 30 years.
Emile Watkins: Stephanie, you also work for Western New York Independent Living. Tell us a little bit about yourself.
Stephanie Orlando: Hello, I’m a Chief Operating Officer with multiple disabilities.
Emile Watkins: Tell me a bit more about Western New York Independent Living.
Stephanie Orlando: We are a group of agencies that includes three independent living centers that help people with disabilities live fully inclusive lives in the community.
Emile Watkins: Great. We also have Craig Donatelli and his parents, Joyce and Max.
Craig Donatelli: Yes.
Emile Watkins: Craig, tell us a little bit about yourself.
Craig Donatelli: I’m Craig Donatelli and I’m proud to have Down Syndrome.
Emile Watkins: You work at the Children’s Museum downtown?
Craig Donatelli: Yes.
Emile Watkins: Max and Joyce, I understand you’ve done a lot of advocacy work. Can you tell me a bit about that?
Joyce Donatelli: You’re welcome.
Max Donatelli: As an advocate, I have been involved in advocacy since before Craig was born. But my involvement has grown broader and deeper since Craig was born with Down Syndrome, 36 years ago today. I worked for Baker Victory Services. I retired after 42 years working with high-risk children and families, children in foster care, residential and preventative services, and Bridges to Health programs. I was also the former Executive Director of the Western New York Parent Network.
Emile Watkins: The Governor [Kathy] Hawkle wanted a change to allow long-term care facilities to have people called medication aides administer medications, which, as I understand it, are usually administered by nurses. The New York State Nurses Association opposed this, saying it would hinder the recruitment and retention of nurses, so the bill did not pass. But from the disability community’s perspective, if this were to happen, I wonder what would happen if long-term care facilities had medication aides. [care] How does the environment affect the daily lives of people with disabilities?
Todd Verwerk: Well, it’s really interesting to see where that idea came from and what it ultimately amounts to. Because you’re talking about people who are in institutions, you’re saying we want to have a certain type of person who is not a nurse administer the medication. As a person with disabilities, I’m very concerned about that, because you’re having people who are not trained administer the medication and they may not necessarily be administering it in the best way. One of our big concerns about people who are in institutions is that they’re being given medication because of inappropriate restraint and seclusion. Are they being given medication when they don’t need to be because of the convenience of the facility or safety concerns? Is that right? I understand that there may be financial implications for the state in terms of what the nursing costs are, but nursing also comes with a high level of education and a high level of ethics to make sure that doesn’t happen.
Max Donatelli: I agree. I really agree. I myself worked in an institution a few years ago, and there was always a nursing staff there. They were certainly highly qualified and had ethical standards that they had to meet. Even if you have someone working for what you might call a low wage, they may not have the level of expertise that you need. And I think that you really need to flesh that out before you actually go ahead with something like that, because it could cause problems for all the reasons that Todd just mentioned.
Stephanie Orlando: I think there’s a lot of ad-hoc approaches to the problem, like, we don’t have enough nurses, so let’s put in people who are less qualified. That doesn’t improve the quality of care, it doesn’t improve the quality of life in different settings. We have to do better and find long-term solutions to maintain quality. So I think that the union’s argument of, “No, this is the nurse’s job,” makes a lot of sense. We also have to think about the unintended consequences of putting people who are untrained in long-term settings, settings like facilities where you have to maintain the environment. So again, the idea of overmedicating or overmedicating is not an ad-hoc solution to the problem, we want to hire people who are more qualified.
Max Donatelli: Another thing, and this is something to distinguish, is that being able to dispense a drug is different from ordering a drug. So if someone is there and dispensing a drug that a professional has ordered, that’s fine. I mean, as long as they’re trained and they know what the specific job associated with it is, I don’t think it’s a problem, because the paraprofessionals who dispense drugs have training. This is different from actually ordering a drug or prescribing a drug. It’s also different from prescribing on an as-needed basis in a situation where someone who is going through a very difficult time may have an explosion and need a PRN. In those situations, if you’re going to use a drug, it should be used by a trained professional.
Emile Watkins: Craig?
Craig Donatelli: I want to say I’m very lucky that I don’t have to have a nurse walk into my house, because I’ve always been medicated and independent. And when people go out and go into places like Willowbrook, people are scared. They’re not well. But at the same time, I support them going out and being free and getting a job like I did.
[Context: Willowbrook State School on Staten Island in New York was an institution for people with disabilities that operated from 1948 to 1987. Willowbrook was, according to the College of Staten Island, “the largest institution in the world for the treatment of people with developmental disabilities, separating them from the mainstream of society.” Willowbrook caught national attention for how disabled people were warehoused, abused, neglected and not provided opportunities to reach their full potential. Advocacy by Willowbrook survivors and their families led to the closure of institutions and a move to community-based services and integrated community living.]
Emile Watkins: Yes.
Todd Verwerk: Craig makes a very good point that the Willowbrook incident actually made nurses more valuable, because part of that investigative report said that untrained people were making medical decisions and creating horrible conditions at Willowbrook. But with that in mind, I think it’s really important to remember that what’s shocking to us about all of this budget is that they came up with these ideas, and then it was negotiated in the budget, and a lot of it, whether we won or lost, we found out after the fact. Nobody from the Health Department came to a group of people who were living in these facilities and asked, “Hey, how is that nurse working at your place?” Right? Who did they talk to before they came up with this idea, other than, “We don’t have enough nurses, so we need to make sure that medications are administered”? “Nothing about us, without us” is something that the New York State Budget Office needs to include as they devise the budget design and the department that follows it.
Emile Watkins: Disabilities Beat is available to watch on demand, and transcripts and easy-to-follow explanations of each episode are available on the WBFO website at WBFO dot org. I’m Emile Watkins. Thanks for listening.