Nuts and bolts of a hospital stay; volunteers overseeing long-term care; dealing with ADHD: Upstate Medical University's HealthLink on Air for Sunday, Sept. 11, 2022
What to expect if you or a loved one is hospitalized is explained by Tina Passett and Karen Wentworth from Upstate's Office of the Patient Experience. The role of volunteer ombudsmen in overseeing long-term care facilities is discussed by regional long-term care ombudsman manager Rebecca Alder of Arise Child and Family Services. What parents can do if they suspect their child has ADHD is outlined by Stephen Faraone, PhD, Upstate psychologist and ADHD researcher.
Host Amber Smith: Coming up next on Upstate's "HealthLink on Air," we'll learn details about what to expect if you need to be hospitalized.
Karen Wentworth: ... Hospital gowns are made for a reason. In order for the care team to be able to access certain parts or areas of your body easily, or if you have injuries, it can be hard struggling out of pajamas to let them take a look. ...
Host Amber Smith: And we'll hear about a volunteer opportunity for people who want to help those in long-term care.
Rebecca Alder: A long-term care ombudsman is an advocate and a resource for people living in residential facilities. We cover not only skilled nursing facilities, but also assisted living, family-style homes and adult homes. ...
Host Amber Smith: All that, some expert advice about what to do if you suspect your child may have attention-deficit/hyperactivity disorder, followed by a visit from The Healing Muse. But first, the news.
This is Upstate Medical University's "HealthLink on Air," your chance to explore health, science and medicine with the experts from Central New York's only academic medical center. I'm your host, Amber Smith. On this week's show, the Central New York region's long-term care ombudsman tells about her role and the need for more volunteers. But first, we'll look at the hospital stay from the patient's point of view to learn what's important to know if you're ever hospitalized.
From Upstate Medical University in Syracuse, New York, I'm Amber Smith. This is "HealthLink on Air." If you've never been hospitalized, you may not know what to expect. So today I'm talking with two people from the Office of the Patient Experience at Upstate University Hospital. Tina Passett and Karen Wentworth, welcome to "HealthLink on Air".
Tina Passett: Thank you, Amber. Thank you for having us.
Karen Wentworth: Thank you, Amber. We're happy to be here today.
Host Amber Smith: Now it can be scary coming to the hospital, especially if you're the patient, and you're sick, or you're about to have surgery. I know everyone's situation is different, but I wanted to go over the basics of what to expect. As someone prepares for a hospital stay, what do they need to be thinking about packing and bringing with them? Karen, do you want to go first?
Karen Wentworth: Sure. So usually for a hospital stay, we provide toothbrush, toothpaste. We can give you shampoos and lotions, mouthwash. You're happy to bring your own. You can bring your own if you'd like. But we would provide those for you, if you forgot those items.
Host Amber Smith: What about clothing items? Should a person bring their own nightgown or slippers, robes, those sorts of things, Tina?
Tina Passett: They can bring their own slippers. And we actually recommend comfortable clothing, especially if they're on a rehab floor. But they really should avoid big blankets and that kind of thing.
Karen Wentworth: Any constricting pajamas probably wouldn't be ideal. Hospital gowns are made for a reason. In order for the care team to be able to access certain parts or areas of your body easily, or if you have injuries, it it can be hard struggling out of pajamas to let them take a look. So we suggest that you try to wear the hospital gown.
Host Amber Smith: What about things to pass the time -- magazines, knitting, electronic games? Should people anticipate that they'll have some downtime? They could watch TV, I'm sure, but if they wanted to bring some things from home, is that advised?
Tina Passett: Yes, it's actually, and they're actually great gift ideas for our patients as well. So books and magazines, maybe some puzzles. We discourage, actually, our patients bringing in electronic devices. However, the hospital does provide iPads for entertainment purposes.
Karen Wentworth: And we know people need to bring their cellphones. However, we just want them to keep in mind that sometimes by accident they can get knocked off of tables. If they don't come in with a charger, we do have some chargers we can lend out, but obviously we don't have enough if everybody forgot their chargers.
We think you should keep jewelry home. All jewelry, including wedding rings, should be home. You certainly wouldn't want your wedding ring cut off your finger. It would be devastating if something were to happen. So, please keep all of your jewelry home and any valuables that you have, including cash. You should not have to bring any cash into the hospital.
Host Amber Smith: I was going to ask about cash. So there's nothing you would buy -- a newspaper or magazine or something like that -- where you would need cash?
Karen Wentworth: Well, you do need cash for those things, but we've seen people bring in very large amounts of cash. So, I would rephrase that and say a large amount of cash needs to stay home.
Host Amber Smith: Gotcha.
Karen Wentworth: But a few dollars, yes, for the gift shop would be fine.
Tina Passett: And in addition to cash staying at home, all medications should stay at home as well. The hospital does provide medications for all of our patients, so they don't need to bring their meds from home.
Host Amber Smith: So if I'm on prescriptions for whatever I'm on, you guys will medicate me with whatever I need during my stay?
Tina Passett: Correct.
Host Amber Smith: What about if I use a CPAP machine to sleep at night?
Tina Passett: We do have CPAP machines (for sleep apnea) to provide for our patients as well, so it's not needed to bring in their CPAP from home.
Karen Wentworth: Eyeglasses, dentures, hearing aids, canes, walkers, anything like that should come with you if possible, and should be labeled with your name and a phone number. In case it gets lost in the hospital, there's someone we can contact to get that right back to you.
Host Amber Smith: What about snacks? Is someone able to bring a favorite snack to have at the bedside?
Tina Passett: Absolutely they can bring in snacks. We actually do allow food from home as well. We do have pantries on all of our units, and as long as it's labeled with the patient's name and their room number, they're allowed to store it in our refrigerators for up to 24 hours.
Karen Wentworth: They can also have food delivered, if it's appropriate and according to their diet in the hospital. We do accept deliveries from restaurants. They're delivered to the visitor desk downstairs, and then one of the staff members will go down and get it for the patient.
Host Amber Smith: Are there special considerations for the pediatric patients coming in? Are they encouraged or allowed to bring a stuffed animal, for instance?
Tina Passett: Absolutely, they can bring in a stuffed animal. And we actually encourage parents, if they want to stay with their child, even overnight, they are allowed to do so.
Host Amber Smith: Well, I want to ask about the visitation policy, and I know that it was necessarily restricted during the pandemic, but in normal times, what are the rules? Can people who are hospitalized have visitors?
Tina Passett: The simple answer to that, Amber, is yes. And it is 24/7. There is no actual "visiting hours." We're open 24 hours a day, and they're welcome to come and visit any time within those 24 hours.
Karen Wentworth: The number of visitors is always limited by the available space. If it's an ICU (intensive care unit), there obviously can be fewer visitors. If it's a private room, there can be more visitors. It just depends, Amber, where they are in the hospital, but we certainly do our best to accommodate that.
Host Amber Smith: Is it ever OK for someone to sleep overnight in a patient's room with the patient?
Karen Wentworth: During normal times? Absolutely. Absolutely. Again, where space permits, staff will do all they can to accommodate a family member or a support person to stay overnight with the patient.
Host Amber Smith: Now, I know there's no smoking on campus, and even within 100 feet of the hospital. Are there alternatives for someone who's a smoker who has to come in and be hospitalized? What can you offer them?
Smoking as well as vaping are not allowed in the hospital, like you just stated. However the hospital can provide nicotine patches or nicotine inhalers, and/or gum to help patients with their cravings.
Host Amber Smith: You're listening to Upstate's "HealthLink on Air," with your host, Amber Smith. I'm talking with Tina Passett and Karen Wentworth from Upstate's Office of the Patient Experience, and our topic is what to expect if you or someone you love is hospitalized.
So tell me what the rooms are like these days. What do they contain?
Tina Passett: Each room has a bed, of course. They also have a nightside table where patients can put a few of their belongings. They also are provided a bedside table to put some belongings on, as well. And that's usually where their meal trays are placed. We also have lockers in rooms so that they can put some personal belongings in those.
Many, many, many of our rooms are private rooms. But in the north tower at the downtown campus, as well as particular floors at our Community campus, do have floors that have semiprivate rooms, meaning two patients in a room.
Host Amber Smith: What about television? Does every room have a television for every patient?
Karen Wentworth: It actually has a TV and a telephone. The telephones are free. The TVs do have a fee. And then most rooms do have iPads as well.
Host Amber Smith: What is the Wi-Fi situation in the hospital?
Tina Passett: Wi-Fi is free, and it is available at both campuses.
Host Amber Smith: Well, let's talk about how meal service is handled. Do meals come at preset times, or do patients order their meals? How does that work?
Karen Wentworth: So meals are available from 7 a.m. to 8 p.m. daily. Each unit has a preset time when the meals are going to be delivered. There are printed menus available for the patients on every unit. Any food that's brought in from the outside that we discussed earlier, just needs to be labeled and could be put in the refrigerator, for up to 24 hours on the unit. And again, we do accept deliveries from restaurants for patients, too, if appropriate.
Tina Passett: In addition to that, there are individuals that work here at Upstate. They're called catering associates. And the catering associates actually round on patients and take their orders for the day, actually for the next day, isn't it, Karen? I believe It's for the next day.
Karen Wentworth: Yes. For the next day, yes.
Host Amber Smith: So that person must be aware of the patients, if they're in the hospital for, obviously for a medical reason, they may have a restriction on what they can eat, right?
Tina Passett: Correct. They're aware of whatever diet order has been placed for them.
Host Amber Smith: Are there foods that are always on the menu in case somebody just doesn't like the entrees that are being offered that day? What are the items that people can kind of always count on being able to obtain?
Tina Passett: For beverages, I would say coffee is always going to be on the menu, as well as our standard drinks like orange juice and milk and different types of juices. There are always salads.
Karen Wentworth: I think if people don't like the hot meal, they can always have a sandwich. We always do our best to accommodate our patients. If they don't like any hot foods, there are cold foods available. As you can probably understand, we can only do so much, but we do our best to accommodate them.
Host Amber Smith: Sure. If patients are hospitalized on a holy day, are religious services available in the hospital?
Karen Wentworth: Yes. The chapel in the hospital is always open, with weekly services. And spiritual care is on call 24/7.
Tina Passett: A patient only has to ask their nurse to have spiritual care services, and that nurse will reach out and have that provided for them.
Host Amber Smith: And the spiritual care provider would come to the patient's room, I'm assuming?
Tina Passett: To their bedside. Correct.
Host Amber Smith: What about interpreter services? What do you have available for patients who don't speak English, or maybe they're deaf? What sort of interpretation is available?
Karen Wentworth: A pretty large interpreter services department. And it is a patient right to be able to understand what is being said to them, especially with their care. So we have live interpreters that can sit at the bedside, if that's appropriate. We have video interpreters. Those are used a lot. That is a video stand that comes into the room, and a live person is called and speaks the language that the patient speaks and is able to talk back and forth to them. And then, Tina, we also have the Vocera badge as well -- is that correct? -- where they can call interpreter services?
Tina Passett: Yes, they can. They can request interpreter services through their Vocera (a communication device.). And it is available 24 hours a day, seven days a week, 365 days a year. And we highly discourage families to be interpreters because they might not understand what treatment regimen is being prescribed to the patient as well. That's why we highly encourage to use the professionally trained interpretors.
Host Amber Smith: So even if a patient has, obviously, their family members with them, you still would advise to have an interpreter as well?
Tina Passett: Correct.
Karen Wentworth: Correct.
Host Amber Smith: Upstate's "HealthLink on Air" will be right back after this short break, with more information about what you can expect during a hospital stay.
Welcome back to Upstate's "HealthLink on Air." This is your host, Amber Smith. I'm talking with Tina Passett and Karen Wentworth from Upstate's Office of the Patient Experience about what you can expect if you're a hospital patient.
I wonder if either of you has looked back historically at what hospital stays were like 50 years ago, 100 years ago, because I imagine things have changed quite a bit.
Tina Passett: Amber, things have changed drastically over the last 50 to 100 years. And just as a prime example, I'm not sure if you were aware, but hospitals 50 to 100 years ago actually were only located in cities. There weren't any in the suburbs. Hospitals were comprised of the poor. And patients actually went to hospitals to die. Patients were actually treated by providers in their homes. So if you had the wealth and the finances, doctors would come to your home to treat you. There was a lot of segregation back then, not only by ethnicity. So they separated patients by their ethnicity within the hospital, as well as their gender. There was no such thing as a private room. You were lucky if you had a curtain. They allowed smoking in the hospital, everywhere in the hospital. You were allowed to smoke in the waiting rooms. You were allowed to smoke in the ORs (operating rooms.) You could, you could smoke anywhere.
Karen Wentworth: Up until 45 years ago, they were no nurse practitioners or physician assistants to offload all the patients the doctors had to see. So that was really a great thing that came to be in the hospital, helping out the physicians, as well.
Tina Passett: Yeah. And surgeons actually performed surgical procedures in street clothes, and they just wore an apron. So things have changed a lot.
Host Amber Smith: Well, let's do this in reverse and kind of look ahead. Do you have some ideas for how hospital stays may change in the future?
Tina Passett: I do. And ironically enough, Amber, I have to tell you, sometimes we really can be going back into the past and looking forward to the future, meaning we have a new program here at Upstate called Hospital at Home. So we're going right back to treating patients inside the home. Currently Upstate is only treating, we have about maybe one to three patients at a time that are being treated at home, but this program, we're foreshadowing it to really launch and get off its feet within the next several months to a year. So we're kind of going back into the past in regards to treating people in their homes.
Host Amber Smith: Well, let's talk about what happens when a patient arrives to be admitted at the hospital. I know there's a parking garage. Is there a special parking rate for someone who's going to be parked there for several days?
Tina Passett: There is. Unfortunately Upstate doesn't own our parking garage. If we did, I don't think that we would charge. But currently patients and family members do have to pay for parking. And if they're going to be at our organization for an extended length of time, they are able to acquire an extended stay pass, and that would be for the week. And that's at a rate of $32.40, I believe. And there is, I believe, a $10 deposit for the access card.
Host Amber Smith: So when someone comes to check in, do they come alone, or do they need to have a family member with them when they come to check into the hospital?
Tina Passett: They can have either. Patients do come by themselves, but most often they are accompanied by a loved one.
So I'm assuming they would need identification, probably their insurance cards, anything else? Along with what you had said, in addition, they should probably bring any advanced directives.
Karen Wentworth: A driver's license, Social Security card, just for identification purposes.
Host Amber Smith: And if they don't have advanced directives? I mean, this may be the first time they hear about that. How do you handle that?
Tina Passett: Patients receive a folder, kind of like if you went to a hotel. Everything that encompasses what your hospital stay is going to be like, contact information. In that folder, they also have a health care proxy form that staff can help them fill out if they don't have one.
Karen Wentworth: They can also discuss it with their physician, as well, in the hospital. And they are very happy to help them make a decision.
Host Amber Smith: Now, what happens if a patient has a problem during their stay? Do they contact your office?
Tina Passett: Actually, no. They can, but we encourage if they have any major concerns or complaints about their treatment, or anything, if they have anything that they really want to file a grievance with, we encourage them to contact Patient Relations. It's funny that you asked us that because we're asked all the time. Patient Relations is different from our office, but they are like our sister, a sister department to us. We work very close with one another.
Karen Wentworth: It's important that they know, because Patient Relations tracks all of the complaints. And if they see trends, then that's where we find out we need to make improvements. That's one of the ways we can find out, so very important that they contact them.
Host Amber Smith: This is Upstate's "HealthLink on Air" with your host, Amber Smith. I'm talking with Tina Passett and Karen Wentworth from Upstate's Office of the Patient Experience. And our topic is what to expect if you or someone you love is hospitalized.
We've talked a lot about people who know ahead of time and can plan that they're coming to the hospital, but I'd like to shift to the emergencies, because I know a lot of people are admitted through the emergency department. They weren't planning to be injured or ill that day. How is the hospital experience different for them?
Tina Passett: I would say the biggest difference between an inpatient that had planned to stay versus an emergency room patient that did not expect to be in our organization for that day, the biggest difference between those two patients is anxiety. Every patient that we have has anxiety because no one wants to be in the hospital, but that person coming in through the emergency room, their suffering is a lot greater when it comes to their emotional well-being. That, I would say, is the biggest difference.
Host Amber Smith: They may arrive with all their valuables with them, their jewelry and that sort of thing. Is there a safe to put that stuff and lock it up?
Tina Passett: I think the first thing our staff do is hand over most valuables to a family member. Get it out of the hospital, get it back home, get it in the right hands. But those valuables that the patient does want to keep on them, we have a safe for valuables that are worth a lot of money, right? But the No. 1 thing is, we try to get it back into a family member's hands and get it out of the hospital.
Host Amber Smith: What happens when someone arrives without identification, maybe they're unconscious. What do you do to figure out who they are and notify family?
Tina Passett: Well, the first thing is they are put into our electronic health care system as an alias, and a social worker works very hard to find the next of kin to identify that patient.
Karen Wentworth: We just want to let families know that when they come into the hospital, knowing that patient is there and they're still an alias, they need to be patient, because a lot of times they'll come to the front desk knowing that person's here, and we can't tell them that person's here, technically. So, we understand the stress and the anxiety in that moment. And we just ask family members to hang on until the appropriate process could be followed. And then once that happens, we will reunite them with their family member.
Host Amber Smith: And obviously the care happens when they arrive. They don't wait to take care of the person until they identify them. They're taking care of this person and doing what needs to be done long before they know who it is, perhaps.
Tina Passett: That's correct, Amber.
Host Amber Smith: Well, before we wrap up, I'd like for you to give us some advice about what we can do to help a friend or family member who's hospitalized. What are some things that would be helpful?
Tina Passett: I would say listening to that patient, maybe calling that patient and trying to pass the time, having that patient vent any stresses or concerns or worries that they have, and just being there for them emotionally.
Karen Wentworth: A lot of patients who are alone, and sometimes people don't want to come and visit because they feel funny about it. But we really encourage people to come when they're able to. Please come and visit. You're more than welcome here. And the patient, actually, it contributes to their wellness and helps them get better sooner.
Host Amber Smith: And I know you said it's available 24 hours a day. Is there a better or worse time? Should people avoid meal times for instance? Or does that matter?
Tina Passett: I don't think avoiding meal times is the biggest time to not come. I think that the time when too many people could be in the room -- let's put it that way -- is first thing in the morning, like 8, 9, 10, 11, those morning hours. Those first two to four hours nurses are really struggling to get their assessments in, figure out a plan for the day, making sure that tests and procedures are ordered for that day, passing out medications, bathing patients. A lot of activity is happening between, I would say, 8 and 11 in the morning. So after 11, I would highly encourage visitors to come.
Karen Wentworth: Patient-centered care is very important to us here at Upstate. And a lot of times, the families do come in after the attendings have rounded with their team. We encourage them to ask the bedside nurse to see if one of the members can come back. They always have questions. We're happy to answer them. And we certainly want to be available, so the family's included in the care plan with the patient.
Host Amber Smith: What sorts of things have you seen that make great gifts for someone who's going to be hospitalized for a prolonged stay?
Tina Passett: Amber, I think many individuals in our community think it's flowers. Flowers is not the answer. Flowers are difficult when patients are discharged to get those flowers back home with that patient. I think the biggest gift ideas are, like we had talked about earlier: magazines, books, puzzles, using the iPad, really anything to entertain and pass the time for patients, but not flowers. Even though our patients do receive flowers, and it's OK if they absolutely want to give flowers, but we discourage flowers being given.
Karen Wentworth: No latex balloons, for obvious reasons, for allergies. But we have Mylar balloons in the gift shop here. We have a great gift shop. And you can also send Mylar balloons in to the patient. We just cannot accept latex.
Host Amber Smith: Gotcha. Well, this has been very informative, and I want to thank both of you for making time for this.
Karen Wentworth: Thank you.
Tina Passett: Thank you for having us, Amber.
Host Amber Smith: My guests have been Tina Passett and Karen Wentworth, both from the Office of the Patient Experience at Upstate University Hospital. I'm Amber Smith for Upstate's "HealthLink on Air."
Next on Upstate's "HealthLink on Air": how volunteers offer long-term care oversight.
From Upstate Medical University in Syracuse, New York, I'm Amber Smith. This is "HealthLink on Air."
Arise Child and Family Services has a long-term care ombudsman program with opportunities for volunteers. We're going to learn more about the role of the ombudsman program from my guest, regional ombudsman manager Rebecca Alder. Welcome to "HealthLink on Air," Ms. Alder.
Rebecca Alder: Hi, Amber. Thank you for having me.
Host Amber Smith: Ombudsmen typically are people who look into complaints people have with an agency or an institution of some sort. Is your group the same type of ombudsmen?
Rebecca Alder: It is. It's a little bit different. So yes, you're absolutely right. There's different kinds of ombudsman.
A long-term care ombudsman is an advocate and a resource for people living in residential facilities. We cover not only skilled nursing facilities but also assisted living, family-style homes and adult homes.
Host Amber Smith: And what geographic area do you cover? Onondaga County, where Syracuse is, but do you cover other counties as well?
Rebecca Alder: Yes. Our program is regionalized, so we are Region 10. I'm responsible for Onondaga, Cortland Cayuga and Oswego counties. That's about 7,000 residents.
Host Amber Smith: There's a lot of long-term care options and skilled nursing facilities, assisted living, there's a lot, within that region, and you're one person.
Rebecca Alder: That is correct. I do have amazing program staff. I have a full-time and a part-time coordinator that do assist me. And then, of course, we depend on volunteers to fill the holes. And with only two and a half program staff, there certainly are holes.
Host Amber Smith: So tell me more about the volunteers. I'm interested in the opportunities and what sort of person you look for to volunteer.
Rebecca Alder: Well, to be a volunteer long-term care ombudsman, we look for people who have a passion for helping residents and working with residents in residential facilities.
We look for someone who is assertive, a volunteer that could go in and speak with the CEO or the director of nursing and work hard through the investigation process to resolve any complaints or issues that a resident may have. Ombudsmen may also file complaints on behalf of ourselves. If we go into a facility and, say, for example, there's an odor, or we notice that several residents aren't properly groomed, we can bring on a complaint as the ombudsman and investigate it that way. So it's helping several residents, not just one.
Host Amber Smith: It sounds like a good volunteer would be someone who maybe worked in the industry, in nursing or nursing homes...?
Rebecca Alder: Not necessarily. Actually, we do have very strict conflict-of-interest guidelines. So to become a volunteer, you must not have worked at a residential or any other type of adult residential facility within the last 12 months. The current volunteers I have come from all walks of life. Some are former RNs. I have someone who in his past life was a HR (human resources) executive. He had fantastic mediation skills, so he is absolutely a wonderful ombudsman. I have a former state psychologist. I actually have someone who was a CNA (certified nurse's aide.) So, really, it's all walks of life.
There is not an educational requirement. It's someone that simply has the passion and drive, and again, to be assertive to get resolution for resident complaints.
Host Amber Smith: Now CNA, that's certified nursing assistant?
Rebecca Alder: Yes. Long-term care facilities must have certified nurse's aides to assist with the nurses.
Host Amber Smith: I see. Now, what is a typical week for a volunteer? What does it look like?
Rebecca Alder: Well, generally what our program does require is a two- to four-hour commitment in a week with the facility that was chosen for them. And I actually do have some ombudsman that cover more than one facility. So that would be a minimum of two hours to each facility covered. Generally what someone would do as a volunteer ombudsman, we ask that they do not come the same time every single week or the same day. We definitely want to keep staff, for lack of a better word, on their toes and not expect us every Tuesday at 4 o'clock, because things look a little bit differently when they're expecting an ombudsman or the Department of Health, versus a normal day.
When a volunteer omdubsman enters the facility, the first thing we ask is that they get a new roster of residents from the front desk. We do have access to that information. And when we have that, we actually go and visit the new residents. We explain our program, we give them a brochure, tell them how we could be a resource and advocate for them while they're there for their stay. Typically after they meet with the new residents, they go just door to door and hit up the residents, maybe they weren't available the week prior, or then they follow up with any concerns or request for assistance as well. Some of the neat things that volunteer ombudsman can also participate in is a monthly residential council meeting. All skilled nursing facilities are required to have a resident council. That's when the residents come together and talk about the bigger issues that affect more than one person. So that's always a pleasure to sit in on these meetings.
Also, volunteer ombudsmen are invited to participate in the survey process. So every skilled nursing facility and adult home that's licensed and accepts Medicare and Medicaid must have a 12- to 18-month recertification survey from the Department of Health. So how ombudsmen get involved is that the surveyor may ask the volunteer what their experience has been in the past year, what are they seeing, any systematic issues?
We also participate with the resident council meeting that the survey team holds while doing their inspection. And then lastly, we are invited to the what's called "exit interview survey." That's what the Department of Health does, prior to leaving the facility. They give the facility staff a list of potential deficiencies. So really it's a wonderful opportunity to go into facilities, assist residents, work with other entities, such as Department of Health and work together to, again, make sure that the resident has the very best quality of life.
Host Amber Smith: So does every nursing home or assisted living facility have an ombudsman volunteer assigned to it?
Rebecca Alder: No, unfortunately not. My region, Region 10, has 64 facilities. Currently we only have six active volunteers. We have eight, but right now, two are on medical leave. And, that is why our program is always recruiting volunteers, because we simply as program staff cannot be in the facilities every week. We try very hard. We, make sure that we hit certain facilities at a minimum, quarterly, but we really do try for monthly. For skilled nursing facilities, we do our best to make a visit weekly, but it has not been feasible lately just due to the lack of volunteers.
Prior to COVID, we had about 25 volunteers, and it was great. We had a lot of coverage, but unfortunately, during the pandemic, many volunteers decided that because they're older and some are retired that it really was not in their best interest to be going into facilities during COVID.
Host Amber Smith: How would someone who's listening to this interview and is interested in volunteering, how would they go about applying?
Rebecca Alder: Well, first thing is to call me at the office. My number is (315) 671-5108. If you don't remember that number, remember the name Arise. Arise is our host agency. So you would call Arise, and the receptionist would connect the potential volunteer with myself. I chat a little bit about what the program requirements are and the process for being certified. All volunteer ombudsmen must go through a very thorough certification process which involves pre- and post-classroom shadowing. And then, of course, the classroom component, which is about 36 hours. The next step is to fill out a volunteer application. We do a very basic background check. Once the background check comes back, then we can start the pre-class shadowing, which is four hours, is the requirement. And what that pre-class shadowing does is it gives potential volunteers the opportunity to see exactly what their time and facilities would look like. I've had, sometimes, potential volunteers shadow me, and after one or two visits, they say, "You know what? This is fantastic. However, it's just not for me." And that's fine. It's not for everybody. And, I actually have a volunteer last year that went through the certification who decided, "You know, it's really not for me to be in the facilities, however, I'm going to come help you in the office." And so we certainly can use volunteers for not only being in facilities, but at the office. That would free program staff up to go out and make more visits.
Host Amber Smith: This is Upstate's "HealthLink on Air" with your host, Amber Smith. I'm talking with Rebecca Alder from Arise. She's the regional long-term care ombudsman manager.
We've all read news accounts from time to time about poor conditions in nursing homes. How much can ombudsmen help someone who is living in one of those troubled nursing homes or who has a family member living in one of those troubled nursing homes?
Rebecca Alder: Well, the main things that ombudsmen do is that we educate, empower and advocate. So when we receive phone calls from people in the facilities that maybe are more in the news than others, not only do we go and investigate calls that come in, but we also do our very best to have several visits that are considered routine. We call them routine visits, and that's where we go and just observe staff, observe the residents, is there an odor in the facility, etc.
And we work very hard to make sure that residents know their rights and how to advocate for those rights. And if they're not successful, then of course we would come in, and then we would be the advocate. Because the program again, is volunteer-based, and at the moment, there's not a lot of volunteers, again, a big component of what we do is education, not only educating the resident, but also their representatives, for example, their daughter or an aunt who has the power of attorney/health care proxy. We also educate staff. It's very common for administrators to have us come in and speak with their new incoming employees at orientation to talk about resident rights and how they can best serve the residents while working in the facility.
Host Amber Smith: You mentioned the advocacy role. Does that apply to residents who have Alzheimer's disease or dementia?
Rebecca Alder: Absolutely. If a resident does not have capacity, generally they do have someone acting as their power of attorney/health care proxy. So they may call us the representative and have us go see the resident and work on any issues they're concerned with. However, if we go into a facility and speak with the resident and the resident does not want our assistance and is able to articulate that, then we do not proceed. You may be like, "Well, that's strange. Why would someone with dementia, how would they even understand?" There's various degrees of dementia. And if a resident, even with dementia, if they can still indicate their wants and needs, that still, that has to be honored. Dementia does not take away their rights to have a certain food, or want to do a certain activity.
So as we work with the representative, again, we also work with the resident with dementia.
Host Amber Smith: Having worked in this field for so long, what advice do you have for families who are just now looking into long-term care for a loved one?
Rebecca Alder: Well, the very first thing I do is I have them look up the Centers for Medicare and Medicaid. Every facility has a star rating, 1 to 5, indicating -- based on surveys, facility complaints, etc. --where their level is. So some facilities are 1. Some facilities are 5. And what's interesting is that, it's a bell curve. So say, for example, you have five great 5-star facilities. You can't have a six. So, therefore, a facility must be a 1 with the curve.
So, that's good to start, but it doesn't always tell the picture of what's going on in the facility. I encourage families to visit, visit, visit. I always encourage families just to take every opportunity they can to visit the facility they're interested in, whether it be during the week during normal business hours, or maybe pop in on a Saturday just to see how the weekend shifts look. Ask lots of questions. Use their senses. Does the facility smell? Are residents appearing groomed? Are they out of bed? Are they doing activities? Are they eating meals that are warm? That's a dignity issue for sure. Things like that. You've just got to ask questions. Ask for staffing ratios. Ask for their contingency plan if too many staff call in sick. These are the things you want to know that will certainly indicate the quality of a facility.
Host Amber Smith: If you have a loved one in a nursing home or assisted living and problems start coming up, what do you advise the loved ones to do?
Rebecca Alder: Communication is key. Many times I have families or residents call me with their concerns, and the first question I ask is, what have you done? And if they say, "oh, gee, I haven't spoken with anyone. I'm afraid of retaliation." So what I then do is, if it's a small issue that's something that all it takes is a phone call, I encourage the resident or the family to make that phone call. And we find many times that that's all it takes is just a little communication between staff and the resident or the resident's family. If it's an issue that cannot be resolved at that level, I ask them if I can proceed with an investigation.
Now, residents and their representatives, they call the shots here. The cornerstone of our program is confidentiality. So if a resident does not want the ombudsman to look into the situation, we do not. We have to honor that confidentiality. If they give us permission, we do what's called an investigation. The investigation may include, interviewing staff or general record review. Ombudsmen do have access to a resident's records, providing we get that permission from the resident. So after we do those things, as well as possibly going in on off-hours maybe going to the facility in the evening, or... I've been to a nursing home, one time I went at 7 p.m. on a Saturday to see the second shift. So with all these things that we do that are in our toolbox, then hopefully we can come up with a plan for resolution.
And then once we have that plan, the most important part of the investigation is follow-up follow up. in two weeks. Did the facility hold true to their word that they would start providing a service or whatever the resolution may be. And if they don't, certainly we keep working, but if there is ever a time where the ombudsman cannot solve the issue, then we do refer to the Department of Health.
Host Amber Smith: Well, Rebecca Alder, thank you for making time for this interview.
Rebecca Alder: Thank you for having me.
Host Amber Smith: My guest has been Rebecca Alder. She's the regional long-term care ombudsman manager from Arise Child and Family Services. I'm Amber Smith for Upstate's "HealthLink on Air".
Here's some expert advice from Dr. Stephen Faraone, PhD, from Upstate Medical University. What should a parent do if they think their child has attention-deficit/hyperactivity disorder?
Stephen Faraone, PhD: The first thing that parents should do would be to discuss their concerns with their pediatrician. Pediatricians are usually very knowledgeable about ADHD because most of them treat children with ADHD in their practice.
If the pediatrician tells you that your child doesn't have ADHD, then you have two options. One is to agree and wait and see what happens in the future, to monitor. But I would monitor the situation if you have concerns.
The second is to evaluate what the pediatrician told you, because there are some pediatricians who have a negative attitude toward ADHD, and if they seem to have a negative attitude about the disorder, you might consider going elsewhere. And where would elsewhere be? Well, the next step would be to go see, ideally, a child and adolescent psychiatrist, because these are clearly the world experts in ADHD, though it can be hard to get an appointment. And therefore you might want to consider seeing either a clinical psychologist who specializes in children or even another pediatrician. But I have to emphasize, if you're concerned about your child, because they're not doing well in school, or if they're not socializing with other kids, they're showing real impairments, I would not take "no" for an answer unless you get a very good answer, because you don't want your child falling behind.
One of the things that always worries me... I should say. I'll tell you why I'm worried about this. Because years ago we did a study looking at the time between the first diagnosis of ADHD, actually the first diagnosis of any childhood psychiatric disorder and the first onset of symptoms. The average distance is about four to six years, which is a huge gap in a child's life. Can you imagine on average, four to six years, not being treated for a disorder? What happens then is that things only get worse because having the disorder complicates the child's life very much.
I'm always in favor of being very clear on why somebody thinks your child doesn't qualify for the diagnosis, when you seem to have clear evidence that there is a disorder there. You can also talk to the teacher, get information from the teacher about the child's behavior. Teachers have a good perspective. It is possible that some parents are just really nervous about how their kid's doing.
I wouldn't, for example, say my kid has ADHD just because they're doing poorly in school. ADHD is a specific set of symptoms. Kids do poorly in school for lots of reasons. Kids with ADHD also do poorly in many situations. If your child only has ADHD symptoms in one place, like at home or in school, that's not ADHD. That has something to do with the situation that needs to be resolved.
And so that's something a pediatrician might be telling you when they say your child doesn't have the disorder. And then once you get diagnosed, once you or the child gets diagnosed with the disorder, then depending upon who you see, you'll get offered a certain kind of treatment. Most pediatricians will offer medication treatment because that follows the American Academy of Pediatrics guidelines, except for preschoolers. And then preschoolers, the American Academy of Pediatrics recommends that one start with a course of family behavior therapy first, and if that doesn't resolve the problem within a few months or so, then to move on to medication.
But if your child qualifies for medication based on those guidelines, and your pediatrician says no. Again, you want a good answer why they're not providing the medication, because we know that the medications work.
Now, another issue that parents face is that they're really nervous about the medications, and frankly, I would be too. I raised three boys who are now in their 30s but I was always concerned when they had to take a medication for any problem that they had in life. So these concerns are very reasonable, but remember, you're weighing your concerns about the medication with the concerns about what will happen to your child if their disorder is not treated. And I've just seen too many cases of children who did not get treated for many, many years because their parents were worried about the effects of treatment -- and they ended up having a very bad course in life that led to underachievement and all the negative outcomes we know that can be caused by ADHD.
So keep in mind that the medications for ADHD, particularly stimulant medication, they've been used for decades. I mean, the first one was approved by the FDA in the 1960s. They were actually discovered in the late 1930s. Phentermine was discovered to help with ADHD back in 1937 or 39. So these have been used for years. Stimulant medications are even used to treat the elderly in cases, particularly where people fall asleep easily and so forth like that. And they've been shown to her safe in the elderly. So they've passed many, many, many safety tests for many decades. So I would urge parents not to be overly concerned about that. The main concern about the use of the stimulant medications is that they're not to be used in anyone who has a pre-existing cardiac condition, because that can exacerbate those problems.
Host Amber Smith: You've been listening to Dr. Stephen Faraone from Upstate Medical University.
And now, Deirdre Neilen, editor of Upstate's literary and visual arts journal, The Healing Muse, with this week's selection.
Deirdre Neilen, PhD: Lisa Ashley is a writer from Bainbridge island, Washington state. Her poem "What Cracks Open" invites us to consider what it means to open ourselves to another.
The scalpel cuts, splits open the skin,
the heart muscle first stills,
then opens to the blade.
Rock fractures when dynamite blows,
the mountain pass opens,
shards crash down.
The pointed garden spade
cracks the ice so robins,
home too soon, can drink.
The sun splinters clouds,
beams warm the surface for the buffleheads
floating there on winter mornings.
The seed wrestles against cold earth,
nanoscopic movements rupture the husk,
the tiny white shoots emerge and green up.
Tell me, do you need to crack open?
I once thought everyone would be better off
if they let their pain break them down,
if they let the pain of others
bring them to compassion.
I thought this was the way
What did I know?
In these late years, I know
what intimacy can be.
I know how the lichen need the rocks,
the trees, all the cracks in the pottery.
I see now how we run so hard
to escape the avalanche.
Host Amber Smith: This has been Upstate's "HealthLink on Air," brought to you each week by Upstate Medical University in Syracuse, New York. Next week on "HealthLink on Air": an update on monkeypox. If you missed any of today's show, or for more information on a variety of health, science and medical topics, visit our website at healthlinkonair.org. Upstate's "HealthLink on Air" is produced by Jim Howe, with sound engineering by Stephen Shaw. This is your host, Amber Smith, thanking you for listening.