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Disabilities Beat: Why people with disabilities have concerns about the attempted creation of ‘medication aide’ positions

New York State’s recently-passed 2024-2025 budget included a lot of changes for the disability community. However, one change that did not make it through budget deliberations was the creation of “medication aides” in long term care facilities. Nursing associations were worried about the impact on recruitment and retention of nurses. But the disability community has slightly different concerns.

This week’s Disabilities Beat features part of a recently aired one hour special on the New York State Budget, which you can hear the entirety of by clicking here. Our expert panel explains why the state may have tried to create this position, the potential risks of medicated restraint and seclusion, the need for longer term solutions to nursing shortages and concerns around the inclusion of people with disabilities in budget decisions.

PLAIN LANGUAGE DESCRIPTION: The creation of a “medication aide” position did not pass in the budget. This change would have meant a new position called a “medication aide” would have been created in long term care facilities. This “medication aide” would have been able to give medications to patients, while being overseen by a nurse. Medications are typically provided by the nurse directly. The New York State Nurses Association was opposed to this because they said it would make finding nurses to work and keeping them at the long term facilities more difficult. While this did not pass in the budget, Todd explains the state likely tried to create this role to save money on nursing staff. Todd, Stephanie, Max and Craig express concern about untrained staff dispensing medication in long-term settings. They worry that people could potentially be restrained or secluded against their will using medication. Stephanie emphasizes the importance of long-term solutions to address nurse shortages. Craig and Todd highlight the importance of including people with disabilities in budget decisions.

TRANSCRIPT

Emyle Watkins: Hi, I'm Emyle Watkins and this is the WBFO Disabilities Beat.

This month we’re sharing highlights from the recently-passed New York State budget for 2024 to 2025. I recently discussed with a group of experts concerns over a controversial proposal, which did not pass, but was the creation of “medication aides” in long term care facilities. This interview has been edited for length and clarity. However we have the entire roundtable discussion this is from, including more perspectives and additional aspects of the budget on our website at wbfo dot org.

Emyle Watkins:  First, I want to introduce Todd Vaarwerk from Western New York Independent Living.

Todd Vaarwerk: Well, I'm the Chief Policy Officer at Western New York Independent Living. I'm a person with a developmental disability who's worked in the independent living field for 30 years.

Emyle Watkins: And Stephanie, you also work at Western New York Independent Living. Tell us a little bit about you.

Stephanie Orlando: Hi. I'm a person with multiple disabilities and I am the Chief Operations Officer.

Emyle Watkins: And tell us a little bit more about Western New York Independent Living as well.

Stephanie Orlando: So, we are a family of agencies including three independent living centers which support people with disabilities in living a full inclusive life in the community.

Emyle Watkins: Great. And we've also got Craig Donatelli and his parents, Joyce and Max.

Craig Donatelli: Yep.

Emyle Watkins: Craig, tell us a little bit about who you are.

Craig Donatelli: I am Craig Donatelli. I am proud to have Down syndrome.

Emyle Watkins: And you work at the Children's Museum downtown?

Craig Donatelli: Yes.

Emyle Watkins: And Max and Joyce, I know you've done a lot of advocacy work. Tell us a little bit about that.

Joyce Donatelli: Go ahead.

Max Donatelli: As an advocate, I've been involved in advocacy probably even before Craig was born, but it got probably more extensive and more involved since Craig was born with Down syndrome 36 years ago today. And I worked at Baker Victory Services. I retired after 42 years working with high-risk kids and families, kids in foster care, and both residentially as well as preventive services and also the Bridges to Health program and also former executive director of Parent Network of Western New York.

Emyle Watkins: I noticed that Governor [Kathy] Hochul wanted to have a change that would've allowed medication aides, as they're called, to administer medications in long-term residential settings, medications that from my understanding, would normally be administered by nurses. The New York State Nurses Association was opposed to this because they said it would hinder recruitment and retention of nurses. And so it did not pass. But I'm wondering from the perspective of the disability community and if this was to happen, if we were to have medication aides in long-term [care] settings, how would that impact day-to-day lives for people with disabilities?

Todd Vaarwerk: Well, it's really interesting to kind of understand where that kind of idea came from and what the ending result is because you're talking about people in settings, so we're saying we want to be able to have a specific type of person who isn't a nurse who can dispense medication. That, as a person with a disability, that concerns me greatly because we have a lesser trained person dispensing medication that might not necessarily be doing it in the best way. One of our big concerns about people in institutions is: is medication being used for improper restraint and seclusion? Are people being medicated when they don't need to be just out of convenience or concern for safety with regard to the facility? Right? While we understand where there might be a fiscal impact statement for the state in terms of how much nursing costs, nursing also comes with a high value of education and a high value of ethic to prevent that kind of thing from happening.

Max Donatelli: I would agree. I mean I definitely would agree. Having worked on a residential situation myself a number of years ago, we always did have nursing staff there and I would agree that they definitely have the high qualifications as well as the ethical standards that they have to meet. Even if there were to be somebody at a lesser pay grade so to speak, they may not have that level of expertise that's needed. And I think that really needs to be really fleshed out before something like that really gets pursued because it really could go down a road that could be problematic for all the reasons that Todd just mentioned.

Stephanie Orlando: I think a lot of these band-aid approaches to problems that we have, like we have a shortage of nurses, so let's bring in someone less qualified. It doesn't increase our quality of care or what it's like to live in these different settings and we have to do better than that and figure out a longer-term solution to maintain the quality. So I think it makes a lot of sense what the union stood for to say "no, this is a nurse's job" and we have to think about the unintended consequences of having less trained people who are put in long-term settings that might be more of an institutional setting where they have to maintain the environment. So again, that idea of over-medicating or using different medications, we would rather have the more qualified person and not a band-aid solution to this problem.

Max Donatelli: The other thing too, and that's to separate out too, that being able to dispense medications is different than ordering the medication. So if somebody is there and they're dispensing medications that have been ordered by the professional, that's okay. I mean I don't see that that's a problem as long as they're trained and they know what their specific job is as related to that. Because there is training that goes with paraprofessionals where they do the dispensing of medications, which is different than actually ordering them, prescribing them and either on a PRN basis, as needed in a situation during a person really going through a very difficult time, being explosive and may needing a PRN. There really is more of a need in those situations if medications to be used, it needs to be by a trained professional.

Emyle Watkins: Craig?

Craig Donatelli: I want to say that I am very lucky that I don't need a nurse to walk in and to walk into my house because I always take my medicine to be independent. And when people are out there and like into Willowbrook, people are scared. They are not good. But with that is… I advocate for them to be out and be freedom and to get 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.]

Emyle Watkins: Yeah.

Todd Vaarwerk: Craig makes a very good point about how the value of nurses actually increased, coming to this point, because of the event of Willowbrook. Because part of that investigative report was untrained people making medical decisions that created the horrific conditions in Willowbrook. I think it's really important though that we build on that and remind, about everything in this budget, what we're shocked about is they come up with these ideas and they're negotiated in the budget and for a lot of them, whether we win or lose, we found out after the fact. Nobody from the Health Department came to a group of people that were living in these facilities and saying, “hey, how's that nurse working for you?” Right? Other than “we don't have enough nurses, we need to be able to make sure medication is dispensed,” who else did they talk to before creating this idea? “Nothing about us, without us,” needs to be something that includes the New York State Budget Department when they're coming up with a budget design and the subsequent departments.

Emyle Watkins: You can listen to the Disabilities Beat segment on demand, view a transcript and plain language description for every episode on our website at WBFO dot org. I'm Emyle Watkins. Thanks for listening.

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Emyle Watkins is an investigative journalist covering disability for WBFO.