February 2011 SCOD Meeting
WELCOME
Present: Susan Quinn, David Tracht, Debra Lobsitz, David Martel, Jack Harris, Mike Sosnowski, Andrew LaPointe, Charlie Reardon, David Moisan.~
INTRODUCTIONS
David Tracht: Today is February 15th, 2011. We’re happy to present our special guess who we’ll hear very shortly. Hope everybody enjoyed Valentine’s Day. Yesterday was a nice preview of spring. Today we are back to reality—back to the tundra. Anyway, thanks to David for being our cameraperson, and thanks to SATV. What we’re here to do is develop education, awareness, advocacy and to remove barriers so that everyone has access to all [things].
The commissioners around the table have done a fantastic job in the work that they’ve done in the city, through the number of years that I’ve been around, and I’ve been around since 2003.
911 Indicator Form
David Tracht: I want to bring up the 911 emergency indicator form every so often. This form alerts emergency responders to people that have disabilities who have special needs. The form is available online or at the police station.
Charlie Reardon: If you have a single-family house, you should have a Knox box. This is a small box that has house keys, and the police and fire have the keys. You’ll see this in many buildings.
Andy LaPointe: I’ve checked into what happens when you change phone providers. It’s my understanding that if you change phone providers, like from Verizon to Comcast, you must resubmit another 911 indicator form. I’ve called Sargent King of the Salem Police to confirm this and I’m waiting to hear back. It is very important to verify that if you have changed phone service recently.
SPECIAL GUEST:~ Susan Quinn, Program Coordinator,~At Your Side Medical Advocacy Program
David Tracht: Debra, why don’t you introduce our guest?
Debra Lobsitz: I’d like to introduce Susan Quinn, of North Shore Elder Services. I’m very happy you’re here with us today. Susan is the director of the At Your Side medical advocacy program and she is going to explain how people can participate, as a volunteer or as one who needs their services.
Susan Quinn: Thank you very much for asking me to come. I’m with North Shore Elder Services. In 2008, there were three agencies in the area, ourselves, Senior Care of Gloucester and Cape Ann and the Independent Living Center of the North Shore and Cape Ann (ILCNSCA) who were seeing a growing need in their population, not surprising considering our clientele.
We never noticed it before but we have an amazing medical system that does things we weren’t able to do. We’ve also created a very difficult medical need: People are living longer lives with more chronic health problems, and as they age, they have more and more difficulty dealing with the medical system.
The medical system is not meant to be confusing, they tell us, but there it is. When you call and have to select 1, 2 or 3 on the phone, and you’re hard of hearing and miss something on the phone, it’s very frustrating. Something needed to be done but there wasn’t a program.
Dr. Johnathan Fine, the founder of Physicians for Human Rights, went through a personal experience with a very dear friend, a judge, very well educated and well spoken. But the judge couldn’t understand what the doctors were saying. His family was away. Dr. Fine, a good friend, went to visit, realized what was happening, and became his advocate.
Dr. Fine was there for his rounds, and to ask the questions that needed to be asked, and to make sure the answers were given in a way his friend could understand while under medication.
After the judge was discharged from the hospital, he and the doctor met as friends again, and they realized, what if this happened to someone who wasn’t as well informed? Dr. Fine likes to meet a challenge head on, so he created the At Your Side program and began to sell it, not financially, but to promote it. He went to us on the North Shore Elder Services. Mary Margaret Moore, of the ILCNSCA was seeing the same trends, as was Senior Care in Gloucester.
We hope, someday, to expand this service through all the 25 cities and towns that our three agencies cover.
Susan Quinn: What is a medical advocate? We’ve found that seniors are so programmed not to question a medical professional. White coat syndrome—I don’t understand him and I don’t want to admit it. Or they’re hard of hearing. Doctors turn their back to you and type on the computer at the wall. What happens then?
You walk out of that appointment not understanding what is wrong. What is the next step? How to maintain your health?
We decided to have a group of volunteers from all backgrounds. We have 16 active volunteers, including doctors, social workers, and ex-sales persons. They go through intense training—6 ½ hours. Privacy rules are very important. Every bill you get and read has privacy rules you have to sign off on.
Our volunteers undergo a CORI and a records check. Volunteers meet with the staff twice to see if they’re a good fit—do they get along with elders? They face some basic, important questions?
What if they go to an elders’ house and they don’t answer? Do you say, oh they didn’t show I’ll go home? No! There is a very specific protocol they must follow.
Their responsibility is: if they cannot make an elder’s appointment, they must notify us as soon as possible. Volunteers have family emergencies or medical emergencies like everyone else. But we never let the elder go alone to the appointment. We arrange to have someone come no matter what it takes.
Privacy is very very important. We are a third party and the rules are very strict. We are a third party you are letting into your medical records. We follow the rules and regulations and sign off for all the doctors our client sees. We make sure the doctor knows that we are there to empower the patient, so that the individual knows everything they need. There may be a diagnosis, there may be this treatment, there may be that medication. We ask the patient—is there anything else you need to bring up? Many people have strokes and the aging process brings memory problems of its own.
Many have chronic illnesses that bring together all their complicaitons of their own. We have one person with a hearing loss who was late deafened: We write everything down. No one ever did that for her—she stopped seeing doctors. The doctors just handed her a prescription and didn’t interact with her. Now a volunteer goes with her and she follows all the doctor’s advice.
In the hospital, in the pre-op, our volunteer told the social worker that they needed to write everything down. The volunteer was reassured, yes that would be taken care of. It’s noted in the computer!
The nurse didn’t do that, so the volunteer had to do that. The anesthesiologist comes out and sees what’s happening. He tells of his grandfather, whom he had to tell his school day and the jokes he heard—in writing, because his grandfather was deaf.
There was an instant change in the room. They reassured the volunteer everything would be fine.
The volunteer had to take care of family issues. The hospital called him: She was being difficult. He asked “Did you write everything down?” No. Once they finally did that, the woman had a much better experience.
It’s like Dr. Seuss Green Eggs and Ham: “would you, could you”. There are only 26 words in that book. Likewise, we constantly ask questions of the doctors in different ways. And of the patients. We tell them to repeat what they were told back to you. That’s a great test.
The doctors have been very pleased to have us there. Not a one has been upset. The patients weren’t getting tests when they were supposed to, seeing specialists, or that they got a different med. Our volunteers know our client’s medical conditions. We cannot handle medications. We can’t open jars. We can look at bottles and compare them and hand them off. We make a list of all the medications they have. And we make sure all their doctors have that same list. We have seen people with two of the same meds, by different specialists. That happens a lot, and we try to avoid that. Our clients don’t always know how to take their meds. They forget. What do you do with a memory
problem?
Those are problems that our volunteers solve.
David Martel: There are lists of interactions.
Susan Quinn: We make that medical list. We make sure our client carries it, if god forbid, they need to be admitted. We create a list, a pocket list. Does everyone here know about the File of Life? It is a checklist put on the refrigerator for the EMT’s to look at, if you’re on the floor and can’t respond.
We have had clients with these and we’ve said, good you have a File of Life. But it hasn’t been filled out. That’s not good. We’ve talked about health-care proxies and advanced directives. A lot of isolated elders haven’t had any; that is a hard bridge to cross and we haven’t been able to do much. Many people have relatives far away. We never list Jane as a proxy, for example, if we have never talked to Jane about being a proxy. She might not be able to. If there is no proxy, the courts will have to decide. Do you want that. How many of you have had that conversation. As a daughter to a mother? “I don’t want to hear that!”
There is no age limit on death. We all need proxies now. And the person we name really needs to know what you want medically, what you believe in. You’re the one getting treatment. If you say “do everything you can”, that’s a choice. But if you don’t want heroic measures, you need to make that known.
If you can’t make decisions, someone may have to make them for you. Or it goes to the courts. We don’t want that.
The program has really improved the lives of our clients. We have people with memory loss who are reminded every day to take their meds. We encourage people to get blister packs, which many pharmacies will make up, with a blister for your morning meds, your noon meds and your evening meds.
There’s a machine that will beep to remind you. If you don’t take your meds, the computer will call you. If I have the daughter in AZ that can call her, we’ll call the daughter and tell her Mom didn’t take her meds that morning.
We’re trying to educate our people to prioritize their questions. The flu shot is not the most important thing; you can ask the nurse or get it at the pharmacy. That’s not why you went there, you went there for a concern. Make the most of your time there. Write the answer. Discuss the answer with someone on your way home.
You have options in your health care. You can say no. You can say, no, I want to try something else. I can’t take this medication, it’s too expensive. But don’t just not follow the advice. Tell the doctor no but let it be an educated no. Don’t tell the doctor you are taking everything when you’re not.
Let’s say you’re taking a 5 mg pill and it’s expensive, so you cut the pill in half and take 2.5 mg. They’re doing the tests and it’s not working. The doctor doesn’t know you’re only taking 2-1/2 mg, but it’s not working so he gives you 10 mg. You figure it’s important so you take the whole pill.
That’s a big jump.
Your doctor is not a mind reader, nor a magician. You need to tell him it’s not working, it’s too expensive or it makes you sick. You are a partner in your own health care.
So that’s our program. We’re always looking for volunteers. People who have been doing this for family members; my mother was very ill. My father was hard-of=hearing. My mother’s primary language was French. Anyone who is comfortable asking questions can be a volunteer.
David Tracht: Can you give us a phone number in case they want to be volunteers or if they need to be clients?
David Tracht: It’s a fantastic service. The medical system is confusing for normal people. Have you had doctors refuse to let volunteers in?
Susan Quinn: Never. We have doctors and nurses. They don’t practice medicine. They are only advocates. They may have a more detailed discussion but they don’t argue tactics. Many of our doctors are retired and don’t carry insurance anyway.
David Tracht: I know on a visit I wanted my wife to come in with me and the doctor wouldn’t let her in. The doctor said he had confidential information and would not allow my wife in to hear it.
Susan Quinn: Don’t let them do that! It is your information! It is your right to let anyone you trust, have that information. Even if you have to sign a HIPPA release, do it! Don’t let that happen again!
It’s very important if you get a cancer diagnosis. You’ll hear cancer and not hear anything else the doctor says. Get a voice recorder. Even if you write things down you might not have the right interpretation. It will be too overwhelming to get the information all at once. You can’t remember it all.
It is up to you to insist on having a volunteer to help you remember. No one expects you to go in blind. No one wants you to.
David Martel: Hospice?
Susan Quinn: We have had a few hospice patients. We have lost four patients. But we are not directly involved with hospices. We had a patient whose daughter took care of her and she could not go away from her new job so she called us in for help. She was so happy to have someone who could help.
We have had some amazing clients—our volunteers tell us they get more out of their clients than they give. They’re such amazing individuals, and that’s a very common reaction.
Charlie Reardon: Business cards to stick on the fridge?
Susan Quinn: We are grant-funded and need to make it stretch and stretch. We are running out of our File of Life cards. It’s tough.
Andy LaPointe: The Salem Council of Aging may have funding.
Susan Quinn: I will call them. Thanks!
David Martel: We try to educate. If we put things out for people to read, people will realize they need it or someone they know needs it.
Susan Quinn: We want to serve the Hispanic community, too.
Charlie Reardon: They see it on SATV and call us, too.
David Martel: People watch our demonstrations here. And pay attention.
Jack Harris: Do you deal with the deaf community? Do you use ASL?
Debra Lobsitz: The way I met Susan was through the case manager on the North Shore of the state Commission of the Deaf and Hard of Hearing. She had wanted to have volunteers trained in ASL. Thanks much for bringing this up.
Susan Quinn: It’s been a very good experience working with the Commission of the Deaf and Hard of Hearing. I was seriously ignorant—I had never known someone who was deaf, I didn’t know how they dealt with fire alarms.
David Martel: We had someone from Verizon recently who worked with the deaf and other disabled people. Just try explaining a phone to a blind person—that is tough.
David Tracht: Susan, thank you very very much.
Andy: This is North Shore Elder Services, in Danvers. Don’t confuse this with Elder Services of the North Shore, they’re in Beverly.
SITE VISIT UPDATE:
Highland Ave. traffic signals
David Martel: As of Wed., the signal at Marlborough Road is working. It is buried in snow. I use it constantly—it is a very dangerous intersection and cars move behind you. It still works, audible signal is fine.
First Church
Jack Harris: That site visit has been rescheduled. What they have done is gone ahead and filed the variance application with the MAAB. But the site visit will still be done.
David Martel: Did the Salem Historical Commission weigh in?
Jack: The Salem Historical Commission has brought it up and it is now being reviewed at the Massachusetts Historical Commission.
David Martel: I suggested to the church, the same architect who did the City Hall elevator project. It fits very well. Perhaps we should show them City Hall as part of a site visit?
Jack: The architectural firm is well known and it’s going to be a big project.
David Tracht: We will wait to hear from you.
Other
Jack Harris: Courthouse hydrant on Bridge St. As some of you know, that is not compliant. I filed a complaint with the Mass AAB. They are waiting to hear from the contractor, but all indications are that it will be moved, probably during the spring.
Market Basket: Jack Harris: I put in a call to Jason.
Salem High School: Just as some of you know, there was a student hurt two years ago; his mother works for the city. He has been trying to get into some of the sporting events at the school. There were certain stipulations made to get variances for access to the field house after hours.
David Moisan: David Martel, on the traffic signal. What signal is this?
David Tracht: Highland Ave. and Trader’s Way.
David Moisan: OK. Different from the situation I am thinking of; the audible signal at the Pep Boys shelter has been snowed in for over a month. I will put in a request to have it cleared. It’s totally inaccessible at the moment.
Great Escape: There have been some accessibility problems. A path will be created from St. Peter St. and will border the building at the wall and go up to the restaurant.
OTHER UPDATES
Lo-Jack Safety Net - more good news
Andy LaPointe: There are still six spots left for those with low/moderate incomes who need the safety net locator. There will be a press release shortly. The name has changed from Project Lifesaver to LoJack Safety Net, but Sargent Brian King is still in charge. The Friends of the Salem Council on Aging has money put aside. If anyone you know who needs the program, please contact us.
David Martel: Salem’s reverse 911 put out a call for a missing senior [who was located].
David Tracht: I heard on the news that this program is coming to Boston.
Charlie Reardon: Will the same bracelet/necklace locator work in other towns?
Andy LaPointe: Yes, if they are in Lo-Jack Safety Net. It is a frequency that is given to you. If you move from Salem, to Peabody, you are certainly covered.
David Moisan: As long as they are under Project Lifesaver or Lo-Jack Safety Net, they will use the same hardware. Technically, they could go to California and if they’re under the same program, they are covered. There was a writeup on the radio system in QST, the amateur radio association’s periodical. Many hams have receivers that could pick up the bracelet. I have one. I only use it for weather spotting, but I could take it to Jack’s house and pick up Emily’s bracelet with it. There are very specific frequencies. This channel, that channel and the other. It’s very cut and dried. There is no other system like them that I know of.
Andy LaPointe: There are other systems, some with GPS. But as long as it is Project Lifesaver or LoJack Safety Net, it is the same system. The person with the bracelet shouldn’t worry about this.
Jack Harris: There is an issue with younger people, who may be moving in and out of a community. There’s still some uncertainty about who deals with it and who is notified. The other thing is, you can’t have any imaging done like X-Rays or MRI’s. It has to be removed by the police department and put back on.
PSA'S
Andy LaPointe: I put together a PSA, the first one, about clearing fire hydrants, and submitted another one about helping your neighbors who might be disabled. The thing is, I communicated with Chief Tucker and Cody to get the go ahead, and sent it to Megan Ackerman [of the City] to put it on the web site but have not seen it yet.
David Tracht: Andy and I were talking about this: Shoveled sidewalks should be at least 3 feet wide. There are too many people, disabled or not, walking in the streets because they can’t walk in the sidewalks.
Andy: There was a case a few years ago of someone who died of exposure because he fell outside and no one noticed.
Jack Harris: The President’s budget proposed a cut back to community block grants, which will affect many of the programs that we advocate for. If people have the time and the opportunity to contact their congressman or senator, as well as the president, it would be very important. CBG’s are going to take a big hit, it looks like.
Salem Main Streets~retail presentation - March 31st
David Tracht: We have a meeting on March 31st, 2011, at 8:30 AM in front of the Main Street business group, 125 Washington St. (Eastern Bank). Andy and Dave Martel is coming.
David Moisan: I am coming. Remind us of the location?
David Tracht: 125 Washington St., Eastern Bank.
Success Stories
David Tracht: I asked Debra to give us some names of famous people with disabilities
Debra Lobsitz: Beethoven was bipolar, and deaf later in life, as many know. Alexander Graham Bell had learning disabilities, Richard Bergman had epilepsy, Ray Charles was blind, Cher was learning-disabled. A lot of performers were like that. Agatha Christie, Winston Churchhill, bipolar. Bill Clinton has a hearing loss. Rosemary Clooney had bipolar, Tom Cruise had learning disabilities. Walt Disney was learning disabled as well. Michael K. Fox has Parkinson’s. Whoopi Goldberg has learning disabilities. Galileo was blind later in life. Rex Harrison was blind in one eye. Thomas Jefferson has learning disabilities, as did John Lennon. Abraham Lincoln suffered from depression. James Madison had epilepsy, as
did Issac Newton. Ronald Reagan had a hearing loss. Christopher Reeves was paralyzed as you all know. Socrates suffered epilepsy. James Stewart had a speech impediment. Robin Williams has ADD. I know this is surprising. Woodrow Wilson had learning disabilities.
David Tracht: A wide variety of individuals.
Andy LaPointe: People are so hung up on being blind and visually impaired, it drives me nuts.
[Debra reads the obituary of Paul Miller, a lawyer born with dwarfism who advocated for people with disabilities and became an activist for people with disabilities.]
Other
SATV: David Moisan: I wasn’t going to have an SATV update, but we have had some changes now and in the next few months.
First of all I want to wish David Gauthier well. He served as our program director for 8 years. He has left to take the director’s job in Winchester. Andy can confirm that he, and I, and Andy have been working on the audible bulletin board project. Unfortunately, Dave left before we could get that concluded. Our new program director is Patrick Kennedy. He was our training person but he decided to step into the programming job.
Next month, our executive director, Sal Russo, wants to come to a meeting. He insists on coming. SATV always has to justify its existence and always has to have members producing programs and we always have be relevant. We are working on this at all times. By this time next month I hope to have good news about the availability of our meeting video outside of our cable channel. I have been working hard for over six months and have considered the Commission in this much earlier. I have been doing this for 10 years and I have been inventing our procedures as we go along.
We have to do more video project. The Commission has an outstanding offer from myself if a camera needs to be somewhere for a video or a demonstration or a sidewalk problem or even a site visit. It has been a standing offer for years. The technology has gotten much better and faster in the days since Jack and I made PSA’s 12 years ago.
I really need to get the Commission involved in this. We have more material than we can possibly cover in a meeting. I love us having guests but I want to be able to do the business of the Commission. It isn’t always happy and sunny—problems come up.
Sal is going to come in and give you a sales talk.
NEXT MEETING: March 15, 2011
Mike Taylor: Rob Welch, Vice President, Outpatient Services, Spaulding Network will talk about our adaptive sports program. It’s very timely with spring coming up.
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