2021-07-12 00:00:00 - Joint Committee on Elder Affairs
2021-07-12 00:00:00 - Joint Committee on Elder Affairs
SHOW NON-ESSENTIAL DIALOGUE
hearing order. I'm pat telling the senate chair of this committee. Uh and I'll let my co chair thomas Stanley from the house introduce the House members were here to talk about um issues related to home and community based21 care today. And uh
Mhm. I think everybody probably here knows that we will first take out of order legislators and then we will go by the order of the bills um by their numbers. And as everybody knows, we will hope you will keep your testimony to three minutes and for members, if you have a question, please use the race hand. Uh Well, little icon to say that you would like to say something or ask a question after somebody has given their testimony. Uh Sure Stanley. Would you like to introduce the house members that are here? Sure we have vice chair, representative Cait Lipper Garabedian. Uh Representative Brucia's from Quincy, representative timothy Whalen from brewster and Representative steven X. Arose from possible and Representative Erica, you know Hovan uh from some of them.
Great. And I know it's too long. Did I protect America? Did I pronounce your name? Right?
Oh, you're very close. It's Erica Idaho even you sounds like an eye, but you almost had it.108 Thank you so much. Chair. Yeah. Great. And I don't see senate colleagues at the moment. So we will move right into the testimony as soon as I pull up that screen. Okay.
Oh first we have people who have signed in to testify, I think actually repairs, uh, is going to talk first. I see you here and then rep Campbell
and rip currents. The first are the legislators that I see here who might like to testify. And Bruce Ayers would you like to speak?
REP AYERS - HB 722 - Sure. Thank you. Senator Jehlen and chairman uh Stanley. I appreciate the opportunity today to testify in support of my legislation. House Bill 722. An Act relative to early-onset Alzheimer's disease. Um, as we know, the Mass Health operates the frail elder waiver to help those who require nursing home level care, allowing them to receive those types of support services at home rather than in a nursing facility. Um However, this waiver sets an age requirement at least of 60 years old. My my legislation would simply remove the age requirement for those individuals diagnosed with early onset Alzheimer's allowing them to receive services through Mass health should they meet the other requirements?205 Uh This is a small population, but one that's desperately in need of these types of services and would allow them to stay in their homes.
Um Madam Chair, I first filed this bill after hearing from a constituent, uh that came to me for help. His wife had been diagnosed with early onset Alzheimer's at the age of 51. At this point, she was 57 and her disease had progressed to a point where she was desperately in need of around the clock care. Her husband still worked as a Quincy firefighter. Uh, he had already used that ball of sick time in personal leave, uh, time to help care for her. He eventually had to take an early retirement to care for her full time and he was able to keep her at252 home for a while at a great personal cost. Ss you can imagine, this uh, devastated him both personally and financially as if she had met. If she were over 60 and met the age requirement of the Frill Elder Waiver, she would still be living at home with her family at that point. Unfortunately, her disease progressed to a point where she had to be moved to a full time memory care facility.
But this, this issue kind of hits home for me. My mom had suffered from Alzheimer's for 10 years before she has. Yeah, I saw firsthand how uh, this is terrible disease rob someone from their families. But we were lucky. My brother chuck and I were able to keep her at her home. Uh, we slept over every other night. We had some help during the day and we were lucky. We were uh, able to keep her at home in a loving environment. But what we're trying to308 do in accomplishing this bill is help constituents like311 the one with312 his wife. Their family deserve to be able to keep her at home and not only for the age requirement, they would have been able to have that option. I think we have an obligation to ensure that this doesn't keep happening to people who are already going through this this terrible ordeal. So I'd like to urge the committee to report House Bill 722 favorably to help334 this small population get the services they deserve in their own homes. SHOW NON-ESSENTIAL DIALOGUE
Thank you very much for that personal testimony. Are there questions? Oh from from uh I know you're a member of the committee, but are there other people on the committee that would like to ask questions?
Okay. Thank you so much. And uh next we have rep Linda Campbell and I believe you wanted to bring somebody with you.
Yes, madam Chair thank you. And uh to Mr. chairman as well and my colleagues. Uh it's good to see. Wait wait, wait. Are you?
Yeah. Mhm. There is that better? Yes. Is it good?
REP CAMPBELL - HB 734 - Okay so um thank you very very much. It's good to see all of you. Um And um I am I as you mentioned, I I have a colleague with mine um from the city of Methuen. Um Susan Regio um who's recently married Sue. I hope that I pronounced that within the ballpark of at least being within the ballpark. Thank you. Um uh and so we're here on418 how 734 and essentially what 734 does is it asks us to take a look at waivers that we could use within the state to make it simpler for seniors to sign up for snap. So I'm not going to um I'm not going to steal any of Susan thunder except to say that Sue has443 been working helping seniors the most vulnerable obtain housing and food um as a senior member of our staff over453 at our senior center. And so she is really an expert on filling out these forms and getting people help. And so Sue. I will, I will let you um elaborate further from here um, on some of the challenges that you know, you face trying to get people signed up and maybe what we might be able to do to simplify um this process.
SUSAN RICCIO - CONCERNED CITIZEN - HB 734 - Okay. Can you all hear me? Good afternoon everybody. Thank you. Thank you to state Representative Linda Dean Campbell for your hard work in our community and noticing uh the um things that we have to go against when it comes to our elders. So for the snap program, I had a lady come in here and I went before legislation back in 2019 before the COVID hit. Um I had a woman that applied for the first time and it took 132 pages of receipts, doctor receipts, copays from her medications, copays from everything and anything that she bought at target for personal hygiene. And I told Linda, I said there's gonna be a simple away for our elders because I don't know about you. But if I go to Walmart this afternoon tonight, I'm looking for my receipt. But yeah, we're asking for 70, 80 and 90 year olds to hold onto receipts for 6 to 12 months.
It's not happening. And they're losing money that they could be getting back from the commonwealth through the SNAP program. It is a very tedious job to set people up with the SNAP program. And I do want to thank the Commonwealth for um at least offering this program. But I gotta tell you when you do 132 pages that comes back for $17. You you look at yourself in the mirror and say, where did I go wrong? Why is this personally getting 17? And really it plays with your mind and I get very emotional because To me, Seniors deserve nothing less and at least $50 on these snap cards.569 But we've got to make it so much easier when they do their snap. Yes. You know what? I know receipts, we have to show receipts for everything in life. However, I think that if they sign a waiver and if I sign it along with them, I'm taking on the responsibility that they are telling the truth. We gotta remember this.
This this population is not the one that's going to take advantage of the commonwealth Quick Story. If I can tell you one. I had a veteran come here and I asked him if he ever signed up for the SNAP program, he was having issues and he said no, I I've never even thought about it. Absolutely not. And I said, well why haven't you? And literally he said, because I don't deserve it. So I took him into a room where there was a mirror and I had him stand before it. I said, can you please tell me what you see in this mirror? He said, well I see a very old man. I said, well that's what you see. I see a gentleman that gave his life service for country. I see a gentleman that could be my father and my grandfather. I see a gentleman who is very deserving of this program. Yes, we put them on and yes, he got the most of the commonwealth.
Well a lot for the snap program. But this is only to reinstate, this is not the group of people. They're going to take the commonwealth for a ride. These are the people that truly need assistance. They are not here to take something that doesn't belong to them. They are not here to have a lot661 of stress going through the paperwork. So Linda was trying to make it so much simpler for our elders and this whole commonwealth that they don't have to hold onto receipts for a year. That671 is just, it just doesn't work and they shouldn't have to, they shouldn't have to just get $17. You know, they're all struggling. I mean, if you could see some of the social security things that I see, I go in the ladies’ room when I cry after they leave because these people need this assistance.
And I thank the Commonwealth from the bottom of my heart on behalf of I think that we put on wetland 137 people so far onto the SNAP program and from the $17 up to the 190 for we are so thankful to each and every one of you in that state house for allowing this program to happen in our communities. Um, the seniors, like they say Susan $17 will buy me a loaf of bread, a gallon of milk and a dozen eggs and they are so appreciative. But please, when we are looking at the snap program for the721 senior, let's make it just a little bit more easier. And if we could start them off, not at 17 in today's day728 and age because everything is going up, if we could maybe go a step higher and go to $50 as the bottom number for these elders. And I thank you so much. And again, Linda Dean Campbell, thank you so much for rallying for all seniors in the Commonwealth. I deeply appreciate it. Thank you. SHOW NON-ESSENTIAL DIALOGUE
So thanks thank you both for your testimony or their questions from members. I is that
mm I'm not seeing any but really appreciate that testimony. I see Rep Kerans there is going to be next. Good to see you again. Where are you? Good morning. Good afternoon. Um nice771 to see you. My former colleague Senator Jehlen. My new colleagues. Um especially my first term colleague, Senator I mean sorry give you a promotion. Their representative Idaho oven and Campbell. Um Thank you all. Do you have a feedback what's happening?
Am I792 on feedback my phone?
Okay. All right. All good.
REP KERANS - HB 745 - Great. So thank you very much for taking me out of turn. I was very intrigued by the conversation that just occurred. I'm glad I813 got to listen to that. Um appreciate815 that I am here today um to817 ask for your consideration of house 745 an act relative to the availability of personal care homes for older adults. I was respectfully asking for favorable consideration. You will hear from others like Lisogor Goni and others on this838 Bill. Um, this Bill establishes a process for licensing personal care homes in Massachusetts through the executive office of elder affairs. Uh, these are sometimes by the way called Heart852 Homes. I have two853 of them in my district. Their, you know, their homes in the neighborhood houses one level. and they're small and it's where people can receive long-term care and daily assistance that keeps them in a home keeps them out of an institutional setting if you will. And I've been down that road twice with elders since leaving876 the Legislature the first time.
So I'm very passionate about finding ways to keep our elders cared for, but independent, and in a setting that's like home, they provide direct care services and help with daily needs. And of course, this is all in coordination with the aging surface service access points. As you know, as we just heard so powerfully, many seniors are struggling with economic insecurity. It is painful to hear what Susan just outlined. So this is a way uh, in my view of helping elders who aren't well-resourced to figure out ways to keep them in a home like setting. Uh, nine states have already gone this route. Uh, this legislation is patterned on the New Jersey model and I greatly urge your favorable action on it. Um, and I thank you all for the work I know that this committee um has been doing lo these many years. I know senator jail and you're very committed to our our elders and gives me hope so. Thank you very much for your consideration today.
SEN JEHLEN - Great, are there questions for Kerans? I have a quick question. Which is is this what we used to call home on the ranch?
KERANS - That's right.
JEHLEN - Good terminology. Good.
KERANS – So971 yes.
JEHLEN - You're right here in a very hesitate to express my opinion. Uh, Good one. Thank you. SHOW NON-ESSENTIAL DIALOGUE
Um Okay. Uh next, if I see no more questions, I will uh thank you all. Thank you for your testimony and I recognize Senator Chandler is here. Thank you.
SEN CHANDLER - SB 397 - SB 398 - Thank you very much. Thank you. Chair Jehlen and Stanley. Uh and the members of the elder Ferris committee for hosting today's public hearing. I'm here to testify on two bills. The first1012 bill is Senate Bill 397 and Act to increase awareness of community based face programs for older adults. I believe that one of the most successful services available to the older residents to ensure independence in good health is the program for all inclusive care for the elderly, locally known as the PACE Program. Nevertheless, older adults who are nursing home eligible often struggle to access community based care and opt to enter into a skilled nursing facility because they're just unaware of alternative community based actions and options. Massachusetts lacks a comprehensive system to alert older residents of long term care services available to them. I filed the Senate bill 397 to help reduce this lack of awareness.
Let me tell1061 you about it. This legislation seeks to raise awareness of alternative long term care program by implementing a system of pre admission counseling for any person who seeks long term care services paid for by either mass health or private insurance counseling will include an assessment of community based service options, including, but not limited to the PACE program and will be provided by either the Department of Health and Human Services were the Office of elder Affairs. When an older adult is compartment with the necessity to enter into long term care, they face a very stressful and daunting task to identify which is the best program suited to their health needs to process to determine medical and financial eligibility for specific services is difficult and very time consuming and the struggle to access appropriate and desirable.
Long term care is especially difficult for older people with disabilities and older people who speak English as a second language. This legislation will ensure that when an older adult in need of services enters the state system or searches for more information, they will be informed of their local pace as an option for care and we will be provided with the necessary information to make informed choices for their wellbeing. My constituents and I are fond of the PACE program because it it accommodates both in home and primary care services for older residents and provides healthier outcomes while ensuring long term independence. It improves quality of life by providing an option to remain in communities Where older adults had their support systems1159 and according to a 2016 Mass PACE brief, the program reduces mass health costs, saving the state $30 million dollars a year.
For all these reasons, I encourage you to give a favorable report the Senate bill 397 an act to increase awareness of a community based face programs for older adults. I also, I'm here to testify on behalf of Senate Bill 398 and act relative to intensive care management for clinically complex older adults. This legislation would mandate a statewide rollout of an incredibly successful intensive care case management pilot at elder services of the Worcester area. We're very proud of what we're doing when we have success and we want to share it with the rest of Massachusetts when it happens. And elder services of the Worcester area is extremely proud of. This. Elder services has been offering this pilot intensive care management program to ask at risk consumers may of 2020. During this time, a total of 170 individuals have been provided enhanced case management through this initiative.
This intensive care management service enabled 87%1228 of these individuals to successfully transition to appropriate community based services. Through the program, intensive care management is provided to individuals enrolled in the state home care program who are determined to be clinically complex and require sustained in depth case management services to remain engaged and supportive without an enhanced case management, engagement and support these individuals often have a hard time accepting or sustaining the services necessary to sustain them and necessary to enable them to remain safely in the community. It is estimated that between 1800 to 3600 individuals each month, or between 5 to 10% of individuals enrolled in the state home care program1280 would benefit from the enhanced case management services offered through this program.
This is a necessary and often overlooked need, but I am determined and passionate about moving the ball forward because I've seen the amazing work this program does in my home city of Worcester. I hope you will join me in bringing this program to your own communities and constituents. And for all these reasons, I encourage the committee to give a favorable report and to look very seriously before doing that. Obviously to send a bill 398 and act relative to intensive case management for clinically complex elder adults. It has worked in Worcester and we believe if it works in Worcester it will work anywhere. So thank you very much for hearing this. And please look seriously at this because this is something that we need and can be done and be done with the saving me done very efficiently. Thank you. Thank you very much for hearing.
JEHLEN - Well let's thank you for your testimony and I will just reiterate what we said before that. We believe this could be the year that we really move forward on some important issues for older people. So with your help in the Senate and with our colleagues. SHOW NON-ESSENTIAL DIALOGUE
and I do see that my coach here has called our attention to that representative blah has joined us. And if I see no questions, which I don't, I will turn to the testimony uh right now from the Alzheimer's panel on on House 7 22 we have Chelsea1373 Gordon? To D Johansson, Clinton, kershaw, joe joe joe Montminy and James Wessler, are you all here? Are you going to do it in order?
Richard Jehlen, can you see me? Let's see. Chelsea Gordon? Thank you. Yes, yes, thank you. Yes, we will go in that order.
CHELSEA GORDON - ALZHEIMER'S ASSOCIATION, MASSACHUSETTS - HB 722 - Thank you. Chairman Jehlen number one Jehlen. Chairman Stanley and members of the Joint Committee on Elder Affairs. My name is Chelsea Gordon. I'm the director of public policy for the Alzheimer's association, Massachusetts and New Hampshire chapter. I want to first thank the committee for the opportunity to testify today on behalf of the Alzheimer's1421 community and thank the legislature for the important steps you have already taken to care for those living with Alzheimer's and other dementia in Massachusetts and their families. I am joined today by several advocates who have been impacted directly by younger onset Alzheimer's and they are here today to share their stories and support of house bill 722 and act relative to early onset Alzheimer's disease.
I want to thank representative Ayers for his leadership on this bill and for considering an often overlooked segment of our1452 population. Those living with younger onset. Before you hear from our advocates and CEO, I wanted to very briefly outline the issue at hand from the Alzheimer's association's perspective and why we are1465 asking for a favorable report on House Bill1467 722. Approximately 200,000 individuals in the United States have younger onset. Alzheimer's sometimes referred to as early onset and we know this number is1477 growing. The stigma associated with younger onset can have a significant impact on an individual's well-being and quality of life and often poses unique challenges when it comes to family work and finances. These challenges can be further amplified for those living with younger onset. Alzheimer's due to lack of appropriate care and critical services.
Oftentimes because they're unique status may preclude access to services as we are currently seeing through the Massachusetts, frail elder waiver, Mass Health operates the frail elder waiver specifically to help residents who require nursing home level care to receive care and ongoing support services in their homes or community living residences instead of in a nursing home. These types of services can allow those with Alzheimer's to remain in their homes for longer, increase their quality of life and reduce health care costs. This legislation would ensure that services provided through the labour are made available to persons diagnosed to the younger onset Alzheimer's disease regardless of their age. If they are otherwise eligible for such services, thank you for your time today and I will hand the rest of my time over and like we introduced Judy Johannson. Next
JUDY JOHANSON - ALZHEIMER'S ASSOCIATION, MASSACHUSETTS - HB 722 - thank you Chelsea. My name is Judy Johanson and I live in Watertown and I'm an advocate for the Alzheimer's Association, a recipient of their services and a former caregiver and Stewart to my late husband, Steve, who passed away in 2018. Just for a point of reference, this is uh, this is him. Well, I don't know if you can see it, but anyways, um, At1575 age 50, uh, I wanna thank the committee for the opportunity to testify today and share my experience with younger onset Alzheimer's at age 58. My husband of 30 years began having challenges with this daily task as a construction project manager at Northeastern University. Steve was diagnosed with younger onset Alzheimer's one month before his 59th birthday. Same age. I am right now.
To attempt articulating the profound impact of this diagnosis has had in our lives as a challenge all into itself. But I'll try to highlight just a few things to state the obvious. Having had the love of my life, our children's father, our grandchildren's gramps experiencing the pillaging of this disease carries in an emotional and heartbreaking toll that will live with us forever. While Steve’s brain carried the disease, we all suffered from it. Younger and younger onset disease carries some unique challenges. When it comes to stigma, Steve was what I referred to as my Swedish Viking, 6ft two broad shoulders and strikingly handsome. It was a head scratching dilemma for his work colleagues to arrive at the decision to deliver a poor performance review to this man whose work had been nearly flawless and looked fine because Steve wasn't the typical profile of what comes to mind when you think of Alzheimer's.
There were times that he could be harshly judged for the symptoms of his disease. Music was therapeutic to Steve. And one example that comes to mind was a time when our musician son Luke, who entertains in small venues, took one of his brakes to help me get his father out to the car when he returned to the stage, someone called out, looks like your father had a few too many tonight. There were other similar experiences in restaurants and airplanes that stung my heart the time that he went to sign a check after having oral work done and realized for the first1691 time that he could no longer sign his name. Of course I jumped in and tried to spare him some humiliation and sign the check. The person behind the death said, I hope you get her to cover all your checks. It was also the time when Steve, severe symptoms were so misunderstood in the er that he was wrestled and restrained.
I just wish that the public as a whole1712 understood what symptoms of Alzheimer's and other dementias can look like. Lastly, while undoubtedly my heart has suffered the harshest blow I feel remiss, not to mention the financial told this disease has taken, having lost Steve to the workforce 15 years sooner than we had planned and then me having to discontinue working to take care of him, partly because finding a day program for someone young made life fiscally arduous. I will need to work now until the day I die and I pray that my health affords me that luxury. I now work at the mass. Alzheimer's Disease Research Center at Mass. General as a coordinator for the memory study and offer caregivers perspective to help others on this. Alzheimer's journey and steve's memory. I continue to share our experience. I thank you so much for listening today and thank you for supporting House Bill 722 and I would like to introduce Joe Montminy next Mhm
JOE MONTMINY - ALZHEIMER'S ASSOCIATION MASSACHUSETTS - HB 722 - Great, thank you. Thank you Judy. Good afternoon. My name is Joe mommy. I live in Plymouth Massachusetts. Um and I want to thank chairs Jehlen Stanley and the rest of the committee for this opportunity to testify today and share my experience living with early onset Alzheimer's. I'm 57 years old and I was diagnosed with early onset Alzheimer's four years ago. Um My wife and I was shocked when I got the diagnosis because at the time, my neurologist strongly suggested that I retired as soon as possible. She explained that I will likely experience some declines in the next 3-5 years That I may not recognize my family in 5-7 years. And she said at the time, you know, in 5-7 years I may actually need nursing home level care. And What probably was the most shocking to us was that I had1828 an average life expectancy of 10 years.
Um My wife and I were just shocked because we had no idea that those diagnosed with early onset Alzheimer’s has such a shortened life expectancy. Um, and get this diagnosis has been very difficult for me, my family, both emotionally and financially. Um, We've had lost income. My wife and youngest son needed to go out and get much more expensive health insurance. I needed to drop my life insurance because the annual1858 renewal premiums skyrocketed to the maximum, which we just couldn't afford. I was forced to retire 14 years’ prior the night prior to when I expected, so we likely don't have adequate retirement savings, you know, and so the retirement that my wife and I have been planning Since we were 20 um and looking forward to it just now been dramatically changed, not just for me but also for her. Um So it's tough.
And for me, I need you just expectations of what I can do, not just today, but periodically over time I need to adjust them continually just because of my abilities and I get that, but things like have difficulty multitasking them. Um I easily forget things to repeat myself. I'll have trouble following conversation. If somebody is talking facts or if they're bouncing around from topic to topic, it's just, it's hard for me because my ability to process things is just slowly declining. And as my condition worsened, you know, I know that eventually I'm going to need nursing home level care, but my family, I would much prefer that I received this healthcare and any other ongoing supportive services, either in my home or in local community living residence residencies instead of in a nursing home because this disease steals your identity, steal your experiences. I just don't want to take me away from my community. That's why I'm asking for your support of House Bill 722. Thank you and thank you to represent a virus for sponsoring this legislation. Um, I'd now like to introduce Clint Kershaw.
CLINTON KERSHAW - ALZHEIMER'S ASSOCIATION MASSACHUSETTS - HB 722 - uh huh. There we go. Hi everybody. My name is Clint Kershaw and I live in Truro Massachusetts. I want to thank all of you for the opportunity to testify. Today. I'm a 60-year-old white male. I was diagnosed at 56 years old with early onset dementia limiting limiting me to three minutes as a high expectation. So just yeah, if you've had enough, um, I want to talk about awareness. It all starts with awareness, Financial, my financial troubles because of my diagnosis. Start with awareness and just it all starts with awareness for me. Um aware, awareness of dementia and Alzheimer's disease. First, the medical field, three examples every year at my physical, my general physician2004 gives me a referral to a neurologist so I can2008 quote, I can get better unquote.
There's no treatment, no pill, no therapy, there's nothing. He is unaware. Second when you go to the doctor, you get that clipboard with five pages of questions and releases. Not one page asks about, ask any questions about dementia. Alzheimer's brain frog or trouble remembering. They are unaware. Recently I had a colonoscopy. Any anesthesia is bad for anyone with dementia. I insisted on talking to the anesthesiologist told him I needed as light as possible. He hesitated. He told me that the drug they use has2046 not been shown to cause any problems. And as I had2050 to point out to him, it also has been shown that not to cause any problems. Here's a practice doing procedures on people 50 and above and no awareness or consideration when we tell people of our disease, friends and family, the reaction is generally the same disbelief, fear, sadness and they simply do not know what to do.
The woman in our support group told told us a friend of her. All right. I'm desperate. Told a friend of hurts that she of her diagnosis. The woman started talking baby talk to her as she asked her to stop. The woman kept doing it. They're no longer friends. I asked her if she ever explained to the woman how to talk to her, what to say to her, how to help her. She never did. Another example. My friends, my closest friends, my support group do not say to me. Do you remember? Because I don't, they will say last week we went to the ponds, we were swimming, we ran into jane and slowly, I'll get it back slowly. I'll be able to participate in the conversation. They did not know how to do this. I explained it to, they only want to help me. They all love me. They all want to see me happy, but it must be explained to everyone. People do not know how to react or act with someone with early onset dementia or Alzheimer's.
I invite every one of you to spend 15 minutes with one of us testifying today. If we can educate you and you tell to people than for than more than awareness will start to happen. Just having this hearing shows awareness. But so much more can be done to help those of us with2151 the disease, but also all the people that are interact with us. Lastly, I want to say something that's a little prude to the point. I hope you can retain this one phrase as you move forward through this process of helping those of us with early onset dementia or Alzheimer's disease. The phrases, I am forgetful, I am not stupid. Mhm Thank you for listening and I ask you to support hospital 722 and I'd like to introduce our CEO for the Alzheimer's Association of Massachusetts and New Hampshire chapter, Our CEO Jim Wessler.
JIM WESSLER - ALZHEIMER'S ASSOCIATION MASSACHUSETTS - HB 722 - So thank you, Clint very much and I don't have to introduce myself. You did a great job. Thanks so much. Um like a Chelsea commented in her opening remarks, I also want to acknowledge really the great progress that we've made over the past several years. Thanks thanks in fact, to the Massachusetts Legislature, we have seen important advances improving dementia care and assisted living residences, nursing homes hospitals now, as well as the creation of minimum training standards for direct care workers from AIDS all the way up to physicians. So we really thank you for that. But we are now at a moment when we need to address the vital issues facing those with younger onset dementia.
I am indeed honored to have being able to advocate alongside Judy, Joe and Clint as we seek to expand access to the much needed services for those living with younger onset Alzheimer's, you heard from the moving stories from these three people? Alzheimer's is unfortunately not just a disease of old age, which I think is a common misnomer, Early or2252 younger onset. Alzheimer's refer to those under the age of 65. People with younger onset. Alzheimer's can be in their early mid or late stage of the disease. It really references in age um about up to 5% of the more than six million Americans with Alzheimer's are in this category of younger onset. Many individuals are in their 40s or 50s and certainly in their early 60s, as you just heard.
They have families, careers, some of them are even caregivers themselves whether of a family2285 member, a spouse or a child that's still at home. They are not over the age of 65 and therefore they are not eligible for Medicare. For the most part, Alzheimer's is the most costly disease in America and younger onset families need our help for. It2304 is almost certain that this disease will drain their finances and possibly even bankrupt them. Currently, criteria for the Frail Elder Waiver depends on the age, location, functional ability, financial2314 status of the applicant and beneficiaries as representative airs mentioned must be a minimum of 60 years of age.
So expanding this waiver to those with early onset is really vitally important, allowing for a better quality of care and indeed, a reduced costs to the commonwealth. So, on behalf of the thousands of Massachusetts residents with early Alzheimer's early younger onset Alzheimer's, I want to thank you2342 for your time today. Uh, and we hope to have your support and again, want to thank Representative airs for filing um, this legislation and bringing the issue of younger onset residents of Massachusetts to your attention and the barriers that they face and with that. Uh our panel is done. And uh Madam chairwoman, we uh we yield the rest of our time back to you. Take any questions that you might have. Thank you. SHOW NON-ESSENTIAL DIALOGUE
So I don't know if there are questions from members of the committee.
JEHLEN - I just want to say that. I think your issue, the question of awareness is really important. I have a friend who I believe was. Mhm. It was late to his diagnosis2386 and therefore he was misunderstood uh and had serious problems. But the courage of those of you who testified today, I just want to say that I think that you are helping erase the stigma and I will remember. SHOW NON-ESSENTIAL DIALOGUE
Yeah. Mhm. Thank you very much. Mr. Kershaw's sentences in case I need them. I think I will need them for interacting with other people and perhaps in my own life. Thank you.
Any other questions I would like to recognize um members of the committee who arrived, Representative con representative Vitolo and representative gentile and I want to say the attendance of my house members today is2437 just outstanding. I think the engagement of this committee is really wonderful and I wanted to recognize that we turn now to
I'd like to recognize them, jara czar Exxaro.2453 I'm gonna never get that. That's close enough. Thank you.
REP XIARHOS - Thank you Senator. Thank you. Chair and colleagues. No question really just powerful testimony. You know, this is new to me. I'm in my fifth month. I was a police Officer for 40 years. Um uh so I just want to say um like you senator, uh that was that was powerful and it makes me think of life and precious it is.2497 And to Joe from Plymouth, God bless you. You spoke very well, very knowledgeable. That took courage and Clint. My fellow Cape carter from sure of. I'm in Barnstable. So I would love to come and visit or you can come visit and learn more. Um you have my support from the heart and like you senator. Uh those words I am forgetful. I am not stupid, powerfully said God2531 bless you. SHOW NON-ESSENTIAL DIALOGUE
Okay, thank you. Are there other people with questions or comments?
If not, we're going2537 to turn to the next panel which is a panel from Mass Home Care. How seven?2545 Uh someone speaking how 72548 40 Senate 3 98 panel2552 is Lisa Gurgone jenny2553 paul tara. Yeah. Uh Jessica valentine and laura Collins.
LISA GURGONE - MASS HOME CARE - SB 390 - HB 740 - Great, thank you. Senator Jehlen. And cheer Stanley. You can hear me correct. Great. Okay. Hi everyone. My name is Lisa Gurgone I am the executive director of Mass Home Care. We are the trade association representing the commonwealth network of 28 area area agencies on area an area agencies on aging and aging service access points um more commonly known as the SFS and triple A's. And we're really excited to join you today to provide testimony on Senate 398 H740 and act relative to intensive care case management for clinically complex older adults. Um and want to start by thanking Senator Chandler and Representative Gregoire for filing this bill for us and Senator Chandler for her wonderful words
At the beginning. I'm just2619 going to quickly talk about the bill, although Senator Chandler did an amazing job this morning already. Um and then I'm going to turn it to three of the staff from our EOEAs to talk about actual stories of consumers that have benefited from this pilot program. As Senator Chandler mentioned, this is a pilot program to provide intensive case2638 management services to older adults who have clinically complex situations. Many of them have behavioral health concerns. Um They are individuals who hesitate to receive services from our network. They are usually referred to us through um a concerned neighbor, the protective services program, what have you?
And they just need more intensive case management, more touch points to get the services they need to stay out of2665 the nursing home to not be um you know, situations where they're hoarding or not safe to themselves. Um So really the goal of this bill is to codify into law program that's been piloted. And again, I'm going to have the people speak about the bill itself to target those individuals, provide them with more enhanced support. I think everyone knows that behavioral health and geriatric mental health issues are prevalent unfortunately throughout our nation. Um, and our commonwealth, and certainly even more so now after COVID, so many people over 65 were drastically impacted by COVID losing loved ones, friends, neighbors. Um, and just fear as well.
You know, they were isolated, had to stay home. Um, and those people have been suffering and we need to be able to provide a more intensive case management service to reach those people. Um in the annual report to the Legislature, elder affairs um indicated about 44%2723 of the people enrolled in the home care program have some sort of behavioral health conditions. So this program really is targeted trying to reach those individuals, um, and get them the services2733 they need. So I'm gonna turn over to Virginia elder services of Worcester who's going to start by telling some stories of people she served in the program, Jenny.
VIRGINIA POLTORAK - ELDER SERVICES OF WORCESTER - SB 390 - HB 740 - Good afternoon everyone and thank you Lisa. Um, like Lisa said, my name Virginia Poltorak and I'm the program development supervisor at Elder Services of Worcester I've worked for the agency for 10 years and I've always enjoyed working with consumers to help keep them in their homes for as long as possible. I especially like working with consumers on this anchor program as each individual is facing their own unique challenges. And this often oftentimes requires you to think outside the box for2769 unconventional solutions. EOEA initiated the advocacy and navigating care in the home with ongoing risks pilot program or ANCHOR in February of 2019.
This program was designed for consumers to receive highly focused care management and coordination that provides more frequent and time intensive delivery of advocacy and other supports to elders who have recurrent or fluctuating behavioral health needs. These individuals are at risk of institutional institutionalization or homelessness due to their inability to accept or retain home care services. The higher level of case management allows for the case manager to have contact with the consumer a minimum of twice a month, whether by in person or by the phone. This is actually an increase from traditional home care programs where the case manager may only check in with their consumers once per quarter when identifying consumers for this program.
We look for individuals that need a higher level of care management that have suspected or confirmed behavioral health diagnosis that impedes or reduces their ability to accept services and do not accepting the services they are found to be at risk. However, behavior health is not a requirement of the program.2844 Many of these consumers enrolled in the program are struggling with issues around anxiety, substance abuse, chronic behavioral health concerns, homelessness, paranoia, dementia or just at a constant level of risk in their2856 lives. For one reason or another, some of these risks that I'm referring to, our consumers that are at risk for eviction because they are hoarding or may have bed bugs, consumers that are at risk for worsening health conditions or hospitalization because they're not taking their medications properly or they have very poor hygiene and consumers that are unable to safely live in their homes due to dementia, mental illness or substance abuse at elder Services of Wister, we have to home care case managers that are dedicated to this program.
They carry a reduced caseload of 50 consumers, half of those consumers being in the world with the ANCHOR program. Since many of the individuals are reluctant to participate in home care services, ANCHOR case managers work with these consumers for 6-9 months to build relationships with them and work with them to begin to accept services, they create a goal and work with the consumer around achieving this goal, which is usually around accepting and maintaining services. A traditional home care case manager usually has a caseload of 85-95 consumers. And for these referrals, case managers are unable to dedicate additional time2927 to consumers that are reluctant to accept the services and they are often unaware of what the risks might be if the elders do not allow the services into their2939 home.
Elder services of Wister started to enroll elders in the anchor program in March 2019 and we began with only four consumers. Since that time, we have worked with 177 consumers and has significantly reduced or eliminated the risk for 88% of these individuals. Today, I would like to tell you a quick story about one of those successes. Gigi. is an 88-year-old female that lives in senior housing and shoes. Very. I was originally introduced to the agency in October of 2016. 3 years before the ancient pilot was introduced, a referral was called in by her daughter as the family was considering to moving Gigi to an assisted living facility. But Gigi2983 wanted to stay in her home upon arriving to her home. For the initial assessment, the case manager found that some of the rooms in her apartment were uninhabitable due to the amount of belongings that were just piled up.
Gigi, expressed that she was very depressed and said that all of her troubles began after her divorce. Her life had just fallen apart and she began hoarding. She3007 was very anxious to have someone come into her home as she was embarrassed about her living situation. Gigi, although very reluctant, was agreeable to have um have some services3016 come into her home and help her with sorting through the items. Before the first day of service. Gigi called her case manager at elder services because she was very anxious. She was reassured that everything would be okay on the day of service the aid went to her home, saw the condition it was in and turned to right around and left. There were so many items in the home that the ages didn't know where to begin and refused to return.
Another aid was sent the following week. This aid took pictures of her belongings in the condition of her home. Now, I'm sure you you know at this point, I'm sure at this3053 point you3054 can only imagine how Gigi felt. She was overwhelmed, defeated and3057 fell into a deeper depression. She had finally allowed someone to come into her home and was rejected. She immediately stopped all services and said that she did not trust the AIDS, mm hmm. Attempts were made by the case manager um to visit with her and resumed services but she would continue to refuse. It was eventually closed in April of 2017. Now in December of 2019. She called Elder Services again. She was now going to have an inspection of her home and she was now at risk for eviction if she was unable to get the apartment cleaned up.
A case manager reached out to her and she automatically declined to let anyone into her home instead of immediately declining the referral. Gigi was assigned to a case to I'm sorry, the anchor pilot program which focused on the intensive case management instead of talking to G about home care services and trying to push their way in. The case manager talked about her, talk to her about how she was doing the weather and things that were important to her. Gigi expressed that she was afraid to let anyone come into the home due to its condition. But all she wanted to have, all she wanted was to have her home cleaned out so she would not be evicted and she wanted her friends and grandchildren to be able to come in and visit her again.
When a visit by the home care case manager was offered. She declined, but the case manager offered to call her the following week. Throughout the next couple of weeks, the case manager build a relationship with the consumer. Um They talked about how they were both polish activities Gigi, like to participate in her family. Within these conversations, the case manager was able to talk with Gigi about how she needed help and with what services we could provide her with home delivered meals began in the case manager used this as an opportunity to visit Gigi in her home. It was a little tricky, but we were able to pull it off. She was unable, when Gigi opened the door, she was unable to fully open the door due to the trash bags and items that were now blocking the way.
She finally agreed to let home care services come in. But this came with her calling her case manager multiple times due to her heightened anxiety. The aid was able to see Gigi a couple of times before the pandemic hut and Gigi would no longer allow anyone to come into the home. She did allow the aid to continue to come on a weekly basis but only to complete some grocery shopping. Her case manager continued to follow3210 up with her on a biweekly basis and although there was no way to see her they were at least able to maintain their relationship. In July of 2020 G. Fell. She was forced to go to her son's home and told that she could no longer live in her apartment until it was cleaned out and safe for her to return.
Her son attempted to clean up the home by himself but he was unable to. He found that now her toilet, her sink and her stove3239 were no longer working. Gigi’s Case manager and her son worked together with a vendor to come and assist with cleaning up the home. Gigi’s case manager, continue to check in with her on a regular basis to assure her that they were working on cleaning the3251 home and to make sure that it was safe. Now, G was finally able to return to her home and she agreed to have the eight come in to continue to de clutter in maintaining the apartment due to the relationships in the intensive case management that elder services was able to provide. We have been able to continue to assist Gigi on an ongoing basis with cleaning her home and she is no longer at3274 risk of being evicted, The apartment is now clean and she is able to remain at home independently. Thank you so much for listening to my story and I would like to introduce Jessica valentine from West Mass. Elder Care.
JESSICA VALENTINE - WESTMASS ELDERCARE - SB 390 - HB 740 - Good afternoon. Thank you for the opportunity to offer stories at today's hearings describing the complex needs the elder's face as they live in the community and wish to remain in their3296 homes. My name is Jessica Valentine and I've been a care manager at West Mass. Elder Care for eight years. Currently, I support consumers enrolled in a program known as ANCHOR, which focuses on elders with behavioral health and complex needs to put them at risk. I will submit to examples that underscore the importance of the complex care management bill before you today. Uh the names have been changed for confidentiality and in the interest of time, I will read one story and I will call her Betsy.
Betsy was referred to the ANCHOR program by the Nutrition Department in April of 2020. She was 74 divorced and lived alone in a mobile home she has owned since she was3340 in her 20s. Her risk included unsanitary conditions within the home, including an excessive amount of dust, poor lighting, the stove and microwave didn't work. Her furniture was disintegrating, her mattress was worn and the springs were showing the refrigerator was packed with spoiled foods. She3356 didn't have any access to her money and she hadn't seen a doctor in years. Betsy still had a rotary dial phone and an old TV that no longer worked. She went to bed when the sun went down, Betsy was a very anxious person who had become overwhelmed and do nothing to problem solve. When I first met her, the only service she would accept was the home delivered meals.
They were her only source of nutrition and she was3385 eating them cold. She was a very private person and denied the need for help. She didn't allow me into her mobile home and answered most of my questions with either I don't know or I'd rather not. She also struggled with word recalling, had difficulty expressing her thoughts. I spent several months checking in on her and making monthly home visits. During the visits. We would walk around the mobile park and I got to know her. She had been in the Air Force, was a teacher's assistance for children with autism and retired from the post office. She was married once, never had children, and after the divorce he had passed. Betsy had a step son whom she adored, who had also passed. She didn't have any informal support. Eventually, when she didn't have any heat and she was cold, she requested help3432 with the fuel assistance application.
That's when she allowed me to go into her home and locate the needed documents. Approximately six months after having been enrolled in the ANCHOR program, Betsy lost one of the front teeth to her upper denture. She couldn't wouldn't tell me what happened, but she was desperate to get it fixed. She agreed to enroll in the home care programs so the transportation service could be utilized to get her to the dentist. She didn't have a current state ID, so the dentist office agreed to see her if a care manager attended the visit to vouch3473 to her identity. A PCP appointment was scheduled for the same day and after we went to the dentist, we went to the doctors. She was diagnosed with a B12 deficiency. She was scheduled for weekly B12 injections for the first four weeks, followed by a monthly injection.
The transportation with companion service was utilized after Betsy became acclimated to the companion children homemaking services were authorized with the same aid who began3496 to clean up Betsy's home. A cellular emergency response to the device. And the laundry service with Austin was authorized. The dust was removed, the refrigerator was purged and the bathroom was clean. We completed a snap application and the aid went and purchased food with the benefits. Betsy was referred to the money management program Over the course of working with Betsy, the little necessities grant was utilized to pay for a replacement birth certificate, lights and a smoke detector, cleaning products, trash bags and paper towels were also purchased, as was a new bed, new sheets and a pillow.
With the support of the ANCHOR program, Betsy's situation had improved. She had lights throughout her home, a comfortable bed, clean clothes. The sanitary concerns were reduced. The refrigerator had fresh food, a TV with an antenna had been donated and the B12 injections had helped Betsy with her word recall. But these bills were paid and the threat of eviction was eliminated. At a recent visit. Betsy's self reported goal was to stay with the friends that I had made. Thank you for allowing me the time to share these stories, illustrating that the consumers with complex needs. It takes time to build trust, meet them on their terms and work closely with them to problem solve and improve the quality of life within the community. And next up we have Laura Collins SCES.
LARA COLLINS - SOMERVILLE - CAMBRIDGE ELDER SERVICES - SB 390 - HB 740 - Uh Thanks Jessica. And so I'm Lara Collins. I'm the Protective Services Supervisor at Somerville-Cambridge Elder Services. Um and I want to thank the committee for allowing us to testify on so important issue today. Um Some more intensive case management has been pretty critical to the work that we do in protective services. It helps to ensure that our clients have long term safety and support of plans moving forward, which is a very big part of what we do. Um protective services works with the most complex and vulnerable elders in our community, many of whom encounter ongoing obstacles to safety, which put them at3653 increased risk of crisis, as well as repeated protective services involvement.
Clients who require in home support in order to remain safe in the community but are mistrustful or paranoid about having people come into the home, often have a hard time building report with a case manager who only sees them or3670 talk to them every 3 to 6 months. They require more contact in order to remain engaged with the services that are needed to prevent institutionalization. Um, I myself worked with a Cambridge resident who was at risk of eviction, do the condition of her apartment. She struggled with hoarding as well as some pretty significant paranoia and required not only protective services intervention, but as well as home care services and additional support from the elder mental health outreach programmer. I'm hot. Um and in order to address the safety concerns in her apartment and prevent housing loss.
The collaborative approach of weekly contact from a combination of or sometimes just all three of us allowed her to begin to trust her heavy chore. Workers, take ownership of the decluttering process and address the underlying trauma that led to years of collecting items. And two years later, she is still safely housed and still working with the same ANCHOR program. I also worked with a Summerville resident who battled alcohol addiction for most of his life and regularly declined help from community providers or medical professionals. After building a relationship with his ANCHOR case manager, her being able to be present for the first few sessions with his in home service providers, she was able to be a liaison and he agreed to weekly home care services and later on significantly cut down on his alcohol intake, threw her support. He was able to remain in the community for years longer than he would have been able to without the support of the ANCHOR program.
Um and ANCHOR is also often a critical piece of community support,3764 which can reduce a vulnerable elders risk to the point that protective services doesn't need to get involved. Um and we do kind of love when people don't3772 need us. Uh I can recall when Cambridge resident who was reported to protective services 12 times total three in the last six months alone. And all three of those reports were able to be screened out because he was working effectively with his ANCHOR case manager to address the risks in the home. Um so if there's time, I'd like to just leave you with a couple of statistics that are specific to our program. So, SCS currently has 22 ANCHOR active ANCHOR clients, 68% of them either have been or are currently involved with protective services. Looking at the list, I recognized most of the names.
27% have avoided eviction and homelessness thanks to collaborations between ps and ANCHOR and about 23% require intensive case3816 management support specifically because they have significant mental health issues, complex abuse, substance abuse histories or significant cognitive impairment. About 14% have avoided long term care placement, thanks to ANCHOR and protective services collaboration and 4.5% have avoided protective services intervention3836 altogether through enrollment3837 with anchor. Um, so when I think the committee for allowing us to testify today and including our stories as they consider this very important topic and I believe our panel is done SHOW NON-ESSENTIAL DIALOGUE
and thank you all for your testimony. I particularly want to be happy to see laura Collins because she has gotten through some very challenging, a very challenging year and we're glad to see you. Are there questions from the committee? I'm looking for hands.
JEHLEN - Okay. And I do have a question because you said this was a pilot in Worcester and yet it seems to be working Western and uh mm and in Somerville Cambridge. So what is the difference between what's happening now and what would happen if this bill were passed?
COLLINS - I'll answer that question. Senator Jehlen. No, it's a state senator channel. It was it's a statewide pilot. So all the chefs are using this pilot right now. Um and so what this would do is actually make sure it's a it's a you know, standard program that is offered through the steps. It's just as a pilot at the moment, but all these steps have the pilot. SHOW NON-ESSENTIAL DIALOGUE
Okay.
I do notice, I believe that Rep Tikolo has joined us and I think there's 100% attendance from the house members today and I just want to commend that. Um Next we have on a panel On House 7 45 and Senate for 18. Um it's a panel from mass home care again, so Lisa Gurgone Robin Nathan and Pete Tirin. Yeah,
GURGONE - SB 418 - HB 745 - thank you, Senator Jehlen. Um and well we have two more panelists today, so this will be a little quicker. So the bill we're talking about now is a new bill that we filed this year for the first time. Um and we're really excited about it. It is um asset Senate 418 How 745 and Act3971 to establish personal care homes for older adults and want to start by thinking thinking Representative sally Kerans who already spoke on this bill. Um and Senator Joan lovely, who is our other sponsor. Um basically what this bill does is it actually establishes a new service um that the Aesop's could partner with housing providers to3993 convert ranch houses into small residential settings where older adults could receive both housing and long term care services and supports.
And as Senator Jehlen alluded to at the beginning, this was actually a pilot that mass home here received grant funding to start in 2006, called back to the ranch. Um And then it was also called Hard homes. And basically after the pilot started, um we worked with elder affairs and at that time it was thought that these homes would have to be licensed as assisted living facilities. Um And that because4029 of the complexity of actually having to do that was very um both complex um and had provided a burden to the industry. Um And as some people will testify today, these4042 homes are being offered in other settings for this about um DDS consumers and others and they are not licensed to assisted living.
So what we're proposing in the spell is to use some language in other states that allows the executive office of elder affairs to regulate these separate personal care homes. Um It also sets up spending model so that both the house itself and the care is provided so that it's a financially viable program. I'm going to turn it over now to Robyn Nathan from Elder Services of Merrimack Valley, North Shore. They actually are word or one of. Mhm. Yeah. They were one of the organizations that piloted the bill original or the problem of the program.
Originally, there were five homes4089 that were established in the North shore. Um4091 And Robyn was actually one of the people that helped launch those4095 bills are those are those buildings. So I want to turn over to Robyn to share her experience of the model. How helpful she found that the people that lived in the homes. Um and really hoping that we can continue to build these models as we know, there is just a huge need for alternatives to nursing homes for older adults. Um and these are small homes. There'd be residents of 4-6 people in the home. They all live together and4119 they get personal care um and all the support they need. So Rod will talk4123 about the model itself and then Peter Chernin, who was our consultant. We'll talk about the technical aspects of the bill Robyn.
ROBYN NATHAN - NORTH SHORE ELDER SERVICES - SB 418 - HB 745 - Oh, I think I was on mute. Thank you for having me. So my name is Robyn Nathan and I've been at North Shore, well, Elder Services, Merrimack Valley, North Shore. I started in 1985 as a student in the4151 Ombudsman program And then was hired in 1987 as a case manager. And here I am. I started many programs and the, and the most exciting was the back to the ranch at the time. It was called with Pauline's Echoes and Carol Celeski and Mike Rogelio and I searched the home with the realtor. We chose the home. We were looking for certain aspect, uh, specifics for it and um, wound up with four homes in Peabody that, that uh, were great. So I'd like to start off by telling you a story about the first home that we opened up and the residents that came there and Irene and Maxine were clients of North shore elder services who lived in poverty.
And they were, they were starting to get frailer and were unable to live at home anymore. They lived together but they couldn't support one another anymore. And Irene had some dementia which was described as forgetfulness. So um they decided that they would move into the home um and we converted a garage into a two bedroom um um part of the home so that they could share their bedroom and then the other three rooms were for the other two residents in the eight. So Barbara lived in a nursing home and when she walked in, she said, you know, my husband always promised me my own home and that I would live in a nice ranch style home and this is his gift to me. And um, she, she was just excited to be there. And we had a man Patrick who moved in who lived alone and was isolated with few visitors, mostly professionals who didn't visit on the weekend because they didn't work and he was pretty isolated and they all jumped at the chance to live together.
They all instantly got along and became instant friends and they described the home as uh more peaceful than um what they would consider living in a nursing home might be. They the rooms were more homey with pictures on the wall and carpets and comfortable chairs and couches. And they had their own private bedrooms with their own personal pictures and bedding and they're fluffy pillows as they said. And uh they knew it meant new friends, increased activity and socialization and the depression would4290 be decreased in less isolation. And so the table for, for meals is a lot smaller with the four people and provided very intimate companionship and um reminiscing and the food was great because it was made from scratch. And they called the laughing table4309 because they could sit and they could joke and they could finally have the companionship that they needed without being in a huge uh dining room where where they didn't even know the person sitting next to them is what they described or what they thought a nursing home would be.
And so the aid was always up for great conversation and debate and she commits with him while she was cooking in the kitchen and she called them the so happy and loving. She she just loved being there and they and they provided more flexibility with individual food choices, meals, meals made from scratch. They had baked goods, which they said the the aroma from the4350 baked goods remind them of of4353 their homes or their parents homes or even even some their their grandparents home. So they they were thrilled with that and they and their drinks and snacks were delivered as they said quickly so you can4366 see the sense of humor with them. They were great and and the one thing they did want was a dog, we did not allow pets, there were no pets. And so they really wanted a dog. So I shared my dog stories with them. So they were happy with that. And then they had personal choices for activities such as knitting and movies and reading4385 and and the doors were alarmed so so they really couldn't leave.
And the the FDA did uh if they did, the aid would know right away. And so Barbara was a NASCAR fan and Maxine and Irene were Red Sox fans and neither cross the line, neither they didn't like NASCAR and Barbara didn't like Red Sox but they soon shared their their love of sports and they introduced each other to their passions and they stayed up late at night cheering loudly and just having a blast with snacks provided from the Aid and drinks. And sometimes it was 11:30, 12 o'clock. They were up until watching NASCAR or Red Sox and Patrick wasn't really interested any of that. But on the nights there were no sports. Patrick could take out his harmonica and he would play songs for them, old songs for them and he would wa wa wa with a cup stolen from the Chinese restaurant was which he was so proud of.
I don't know why he was proud, he was so proud to have this stolen cup from the Chinese restaurant and the girls would sit and clap their hands and sing along and they just had a great, a great time. And so I was involved with the planning of the home for about eight months and then it transitioned over to associated home care, but I was still the case manager for Maxine4466 and Irene and so I was able to visit the home4469 frequently and so we had a birthday party at one point from for Maxine out on the back patio just a few weeks before she died. She was only there for eight months. But uh, they could sit out and back with the rays garden and they could pick up the flowers or they could weed it out or do what they wanted and they have some cookouts and visit with family out there which provided another form of privacy for them to visit.
Everybody didn't hear them and they didn't have to share the space that it was4500 a beautiful beauty. It is still a beautiful, beautiful yard in a nice neighborhood. And so when Maxine died, Irene was able to stay with her friends who knew Maxine and could reminisce with her about Maxine and comfort her, which helped her tremendously during this, during this transition for her and Maxine's daughter lived in New York and would visit and every time Maxine the daughter left, she everyone would say where is the salt shaker? So you see it was a it was a family thing because Maxine would take the salt shaker because Irene couldn't have salt and she didn't want the aid to sneak any salt into the food so everybody would be looking for the salt shaker. So it became a joke that every time4543 they went shopping they had to buy a new salt shaker.
So it's just a funny little tidbit there. And uh and everybody caught on after a while for Maxine's visit. So um but Maxine was able to call the aid call the coordinator, get some real time information about what was going on with her mother as we're Barbara's family. And um and Patrick's uh case managers or social workers could get real time information from the aid. And so they they loved the fact that they would have a bedroom with the door and they could decorate it their own way and they could have the fluffy pillows in the bed and it gave them a personal space to retreat. And I like to say it gave them a place to retreat, regroup and re enter because some days it4589 could4589 be a little more stimulating that they liked because of so many people there and so much action going on.
And so they they felt it was they could be calm and relaxed and it gave them some privacy and then at night they knew the aid was only steps away, she was in the next bedroom and only steps away if4611 they needed her if they needed to yell out. And so the, you know, everybody knows most people know that personal care meal prep and med remind are key components to living in the community and avoiding nursing home placement. And all of these are met on a daily basis by the aid in the heart home, on a personal basis. And she knows when they4632 don't feel well and she knows what to do for them and she knows when to notify the families. And so um and4639 I and I and I also am the coordinator for a supportive living program in Peabody, which is in a side, but it's what I'm going to tell you about the story. So one of the aides who works in support of living overnight, but SHOW NON-ESSENTIAL DIALOGUE
We should try to stick to this one topic.
NATHAN - Oh I am, I am so she lives in one of the homes and said that um she's been there for three years. Irene lived there for 10 years in in this first home. And so it It just speaks to how the longevity of the person who lived there. Irene lived there for 10 years. I don't know about Barbara and I don't know about Patrick, but I do know that even the staff has sustained long-term employment at these places just to keep people out of a nursing home. And so I'm thrilled to be speaking about it because it's it's4691 a program that I firmly believe in and seeing it in action. Just know that it works for people. So thank you SHOW NON-ESSENTIAL DIALOGUE
and thank you for your4700 testimony. Oh, we have one more person on this. Do you have another person on this panel? I believe so, yes.
PETER TIEMAN - MASS HOME CARE - SB 418 - HB 745 - Uh Good afternoon Chair Jehlen chairs, family committee members. Um my name is Peter Tieman. Um I will try to be brief with my remarks um and listening to rob and I do want to emphasize uh we're all listening that Robyn really is the proud author to the service model that we're talking4729 about personal care homes. I've been fortunate to have been involved with Robin and her advancing this model Um for just about 15 years. And it is really remarkable4740 both her passion and commitment and the difference that it's made a lot of people. We've been able to take advantage of the service setting. Um, I'm going to focus my my remarks more on the technical benefits of the personal care homes legislation as opposed to the service model. As mentioned. Robyn, certainly a fine champion on those on the service benefits.
Um, to provide a brief background on since 2016, I've been providing consulting services in the area of home community based services, primarily offering services to other state governments, uh, trade associations, MCO’s large service providers. Um prior to this role, I had a 20 year career in Massachusetts state service uh, during during which time I had the privilege to serve as chief of staff and then CFO for the executive Office of4795 Elder Affairs, serving four secretaries to acting secretaries across4799 the span of three administrations. This is particularly relevant because of some of the technical challenges um that we're faced when trying to launch this service model. Um, well, the benefits of the heart home setting and the service model has been widely recognized by many, um elder affairs management teams.
Um, A routine point of failure uh, to the deployment of uh and4825 proliferation of the personal care homes model has been the intersection with the assisted living regulatory environment. I'm sure when I say the term assisted living, Um, the image that comes to mind is not a small home of 4-6 unrelated older adults who are receiving services in that particular home. Um, but the Executive Office of World Affairs has routinely interpreted, and I should say, I actually agree with the education, um, interpreted the Assistant Living statute and regulations to apply to this particular service model. And there were several major pushes by the Executive Office of all their4867 affairs4868 to try to figure out how to solve this particular dilemma, ultimately, to no avail.
But the advantage of being and will step out of state government and look at practices in other states. It was realized that there are other states that are distinctly regulating personal care homes and was realized that that could potentially be the technique to break this setting out of assisted living, define it as its own setting, um and established and begin to establish its own regulatory framework. So that's ultimately the goal of this House bill. Or4904 I should say that's the technical goal of this House bill, but the outcome will hopefully provide a high value setting that should be utilized by uh many uh many elders in need of home and community services. Thank you for your time. Uh once again committee members and chair Jehlen chairs and Chair Thomas. SHOW NON-ESSENTIAL DIALOGUE
and thank you for your testimony. I'm looking to see
are there questions from members
and seeing none. I'm thanking4933 you again. I know that
well. We do. Um Representative gentile has a question. Okay, I didn't see that. Rep gentile.
REP GENTILE - Thank you, madam Chair. Um I have a question. I'm curious what other states have already set up the personal care home statutory framework because we don't need to reinvent the wheel. And um if you could tell us what are4967 the states to look too so we can examine their statues. Thank you
TIEMAN - Lisa. Do you want me to take the lead on it?
GURGONE – Sure, you lead.
TIEMAN – So, thanks for your question. Representative. So in in drafting the proposed legislation is largely influenced primarily by the New Jersey, but the principles embedded in the New Jersey model. We also looked very closely at the uh, in Pennsylvania and we examine Illinois in Arizona5005 off the top of my head, we sprinkled some components from those various states into the proposed language. At the same time, we tried to keep the overall essence of the Massachusetts assist the living statute. So in terms of the regulatory operation, it will be largely similar to the method of regulating it won't change, it won't require a change in regulatory approach. But the, I would say the framework is largely modelled primarily off of the New Jersey model customized for how elder affairs regulates the living. Sorry for the run on answer.
GENTILE - Thank you very much. SHOW NON-ESSENTIAL DIALOGUE
thank you. I see that Senator Timilty is here.
SEN TIMILTY - SB 433 - No. Hello, madam, share, share jail and share Stanley distinguished members of the committee and was viewing public, It's a privilege to be here and thank you for this opportunity. I rise today or of course appear virtually today, uh, in front of this distinguished committee to testify in favor of a bill that I have filed Senate bill 433, which is an5076 act relative to food stamp enrollment for our senior citizens here in the commonwealth.5081 This bill will require that the department of transitional assistance to work with the Department of Elder Affairs and councils on aging to provide educational programs on the Supplemental Nutritional Assistance Program, which is commonly known and referred to a SNAP. Additionally,5097 chair Jehlen and chair Stanley. This will require DTA, DA and councils on aging to do outreach. I should say conduct outreach to eligible participants over the age of 60 and a system in enrolling in snap. Counsels on aging are the local connection to our seniors as well.
Well aware in this commonwealth. The best way to achieve this goal, in my estimation is by making outreach a collaborative approach between state agencies and our councils on aging. Of course, so I alluded to a moment ago, are on the front lines. For instance, the COVID-19 pandemic has underscored the fact that there5137 is a techno technological gap amongst our citizens here in the commonwealth. This course5142 has become painfully apparent during the initial rollout of the vaccine appointment system. Individuals over the age of 60 who are most susceptible to COVID could not easily access the means to register for a free5156 vaccine. So obviously that is something that is painful to even talk about because of the angst and the detrimental health potential effects that could5166 have had on our seniors and in some cases did. Additionally, our senior citizens have5171 struggled with food insecurity during the pandemic, whether it was as a result of a change of income,
Fear of contracting COVID-19 at a supermarket or the inability to use online means to order groceries. Yet another example of the struggles that I've seen you have felt and of course has become exacerbated during this pandemic. According to project bread. Prior to the pandemic, household food insecurity in Massachusetts Was at 8.2%. However, As a result of the COVID-19 pandemic, this percentage crested at 19.6%. In short as a commonwealth, we have much work to do in order to eliminate food insecurity of which we are all cognizant of. By raising public awareness. Chair Jehlen, chair Stanley of the snap program, specifically amongst senior citizens. We can further work to eliminate food insecurity across the commonwealth. Therefore, chair Jehlen and chair Stanley members of the committee. I respectfully request a favourable report for Senate Bill 433. I am also looking forward to working with this committee to secure favorable passage and more than happy to answer any questions that any member of this committee may have at the moment or down the road. Thank you again, Chair Jehlen and Cahir Stanley. SHOW NON-ESSENTIAL DIALOGUE
and thank you for your testimony. I'm looking for questions. I do not see any. Um I'm gonna take next. Thank you. I have a request to take uh Senate 399 next because people have to leave. I apologize. I think I've been very um because of the great testimony, I've let people go on but I'm hoping that people will um be more ice with what have I hear, what is happening.
I don't know. I'm going to take Senate 3 99. Next we have a panel gina frank, Stephanie, White, Reggiana, Petrova lisa, burke mary, Ellen scott and Denise Cronin and hoping this would be a great and concise panel.
GINA FRANK - SEIU LOCAL 509 - SB 399 -Thank you so much. Senator Jehlen and chair Stanley. Um My name is Gina Frank and we will5337 be super quick and thank5338 you so much for taking us out of order so that we have some incredible case managers who need to go back to caring for our seniors. So I really appreciate you taking us out of order to make sure that they have time to speak. Um Once again my name is Gina frank. I'm deputy legislative director for SEIU Local 509 We represent 20,000 service workers across the state and like I said, I'm here with several case managers who are also members of 509 to testify in support of Senate Bill 399.
An act to promote quality case management services on behalf of the elderly filed by Senator Nick Collins. This bill would5369 put a cap on the number of home visits per year for any case manager or geriatric service coordinator employed through an5377 A SAP or aging service access5380 point, or funded by the Senior Care options initiative. All let our members, the case managers themselves share more details. But I just want to say that these incredible women face heavy workloads that are fundamentally unsustainable and due to increased needs because5395 of the pandemic. Their workload has only increased.
This workload is5398 not only unfair to the workers themselves, but it's also a fundamental disservice to the thousands and thousands of Massachusetts. Seniors who rely on these case managers every day for connecting them with essential services and navigating complicated bureaucracy. This workforce, which is made up of almost entirely women who have devoted themselves to caring for. Our seniors deserve a manageable workload and our seniors deserve the highest quality level of care. Therefore, on behalf of SEIU Local 509 I respectfully ask that SB 399 receive a favorable report and now I'd like to introduce you to, I'm going to pass it on to Presianna Petrova, followed by Lisa Burke. If you can get a signal. So she's maybe. And Maryellen Scott and Denise Cronin. Presianna, are you there? Yeah, I know that Lisa is on. So maybe we should skip ahead to Lisa Burke. Okay. Mhm. Yeah. Seeing Maryellen Maryellen, why don't you pick us off? All the folks are getting on?
MARYELLEN SCOTT - SOUTH SHORE ELDER SERVICES - SB 399 - Sure, sure. Hello, my name is Maryellen Scott. I worked for South Shore Elder Services. I have been a case5488 manager for 14 years, this July Um over my 14 years as a case manager, um case management has become more complex. Case numbers have gone up and the responsibility has become greater. Even the quote unquote typical consumer for elder services has changed their younger consumers with more severe and complex medical conditions, um including mental health. Um, the time that needs to be dedicated to one consumer is larger, making it more difficult to5520 give the proper case management to each consumer with a lower number of caseloads and visits per month per year. A case manager will be able to devote the proper time, um managing the care for the consumers receive and to navigate the programs that they may be eligible for, such as food stamps, maybe possibly going to PACE program.
Helping them navigate all those different possibilities with a lower case load and visits per year, a case manager will be able to manage the care to allow them, allow the consumers to stay in their homes safely and maintain as much independence as possible. This is why we became case managers who expect me personally, um, to keep people in homes. I work with the individuals who are under the frilled waiver program. And having them stay at home is phenomenal. They would, that's where they would rather be. Have their animals, have their friends and families stop by and being able to supply them with the services they need to do. That is wonderful. Um, and, and just in listening to everyone's testimony, um, you know about the making, um more people eligible for the failed to5597 waiver program to allow for those who have been diagnosed with early onset of Alzheimer's, that takes case management.
That's not an easy, um, you know, a number of services. We're not talking about a homemaker three hours a week. We're talking about, you know, 20 hours a day and having to arrange that and having to help people and families5621 navigate that. Um, that's not something you know, that that's very easy. Um, and then also in regards to the ANCHOR program, after all of that hard work is done getting the consumer to accept the services they are in need of. After the six months, those consumers go back to the regular home care case manager, Medicaid case manager. They were going to continue to need that support. And that takes more time, um, you know, in order to end and attention to keep them, you know active and and accepting these services. So, um, you know, I appreciate you taking the time, um, and listening to us and, and hope that you support this bill. Thank you. SHOW NON-ESSENTIAL DIALOGUE
And I think Christiana was calling it on the phone so, and she was having some technical difficulties. So Christiane are you there? Yes, I'm here. Can you hear me? Yes we can. So wonderful. I apologize. I've had a lot of technical issues today, so this is the time device that I'm trying to use.
PRESIANNA PETROVA - BOSTON SENIOR HOME CARE - SB 399 - Thank you to everyone for being present and I just want to say I'm really touched by everyone's testimony and impressed by attention and care exhibited by our representatives and senators. Um my name is Presianna Petrova. I am a bilingual case manager with Boston Senior Home Care. I have been a case manager for the past 14 years um and a lot of why I have stayed with home care is because I I feel my job really makes a difference and has allowed me to make a difference in the lives of countless elders in their greatest time of need sometimes um similar to other speakers, I do encounter a lot of the same issues.
Um We do have issues with homelessness, bedbugs, um Substance abuse issues, which makes it very difficult at times to service our elders and it requires a lot more time care attention. Um we also have a lot more documentation, restrictions and requirements that we didn't necessarily have before when I first started 14 years ago. Um some of what my job entails is having a caseload right now. I have a case, a lot of about 102 clients. Um and I do see them every six months. I have clients that I see every two months who are in, who receive extended care plants. That means that we're providing sometimes up to 24/7 care um for our very needy clients. Um so that obviously those are a lot more involved. Um Hello, can you scare me? SHOW NON-ESSENTIAL DIALOGUE
We can hear you okay.
PETROVA - Um so those cases um this is a relatively new5781 um initiative, I should say. Um we didn't always Provide 24/7 care, so that in itself is um a lot more involved. Um it requires more of home visits, more contact with the families and we deal5798 with more issues that can sometimes be more intense as well because of the amount of5803 care that we're providing. Um so it took day for me would be I would call people checking on them, deal with service issues that could be as simple as homemaking. You know, I don't like my homemaker, she has an accent or something like that. Um you know, there's just very specific things that5821 people don't like, or it could be as complicated as, you know, I I don't feel good, you know, what should I do? You know, some people call us instead of 911.
So we have to be able to have the time and you know, be able to to redirect them or try to help them somehow, even though that's not, you know, we're not an emergency type of service. Um It does happen where people reach out more to the case manager um because we are who they know. Um and there's other people mentioned, it does take a lot of time to build report and established relationships which allow us then to be able to help our elders to get services inside the home and to really make sure that they have a good quality of life and are able to remain in the community. Um, so some of the challenges as I said have been just um we have a lot more documentation requirements um which5873 takes a home visit nowadays can take up to fort for five hours between travel time actually seeing the person documenting um You know going through the whole we call CDS.
Is a list of about 250 questions that we have to answer every5890 home visit. Um So we have to make sure that we are properly documenting um going through the pandemic has brought on additional issues. We were helping with vaccine distribution setting up people to with transportation to go and get their vaccines. A lot of my clients were calling me and asking me whether or not they should get the vaccine or not. Um so just a lot of different things like that and I would say well no you should talk to your primary care. You know I'm not a doctor but people do reach out to us for things like that because they do feel more comfortable with us. They see us, they know us. In my case, I've had clients for the past 13 years that I've known. So you know, we do become close to them. Um and you know, as I mentioned earlier, I have stayed on this job because I really feel I make a difference in people's lives.
Um but that's a lot harder to do when you have as many as 100 or more clients and you know, you want to get this person in the air conditioner, you want to apply for a scholarship for this other person who doesn't have, you know, it could be food could be, they don't have a bad a lot of different issues. In my case, I'm bilingual case managers. So I deal with a lot of undocumented elders, which in itself presents a lot many5968 different challenges. You know, translation. A lot of the time, they are the only contact or the only person that they know in the United States is me. So they will come if to translate something or they got a phone call, they need help with this or that.
Um, so that takes additional time, but being able to address everyone's needs and for me to feel at the end of the day to like I have done a good job helping people like I have done everything I could for this person has become harder and harder because of the many restrictions and requirements that we have imposed upon us. Um, and it's not just myself who works later in the day. The hours are getting longer and longer that, you know, hours that we put them out from our personal time because myself and my colleagues don't feel comfortable with just, you know, doing the bare minimum for somebody and documenting it. You know, we go above and beyond on a daily basis to solve our clients that we care and to get them to help we need it. Thank you for your attention. SHOW NON-ESSENTIAL DIALOGUE
Okay? Yeah. Sorry Cherry. We've been juggling around a little bit. I know lisa is also on the phone and was going to speak
is lisa Burke here.
I can't see or hear her. Yeah, neither can I. We should go to Denise Crone and then who's our only other testifier? Is she here? Right here.
DENISE CRONIN - HESSCO ELDER SERVICES- SB 399 -Thank you for allowing me to speak today on the importance of capping home care, caseloads and home visits. My name is Denise Cronin and I have worked at HESSCO Elder Servicesfor almost seven years with most of my time as the intensive and ANCHOR case manager. As you know, we work with the poorest elders in our state who have medical and mental health struggles, some of whom have very limited family and community supports to provide quality case management to this vulnerable population takes time Doing 23-25 visits per month. It's almost impossible to give the time that our elders deserve.
Let me give you a concrete example Just like 10 days ago, I set up an initial home visit with an elder after hearing concerns from a community partner. The intake had6119 been done telephonically due to COVID and the elder had warned me that there was a trash problem. After assessing the home and speaking with the elder, it was significantly more than a simple trash problem. It's set into motion multiple phone calls to family filing, a protective service report extensive documentation of every action I have performed and attempts to find a provider to deal with6140 the hoarding situation. This is not unusual. Our home visits will unearth concerns and problems that need to be addressed and they need time to be addressed each day.
We use case managers help consumers access benefits like food pantry, fuel assistance, SNAP and mass health set up transportation arranged for in home services,6160 assist with making referrals for mental health services, field phone calls, questions and concerns from consumers and family members work with providers and community members. They end. The list is endless. Sometimes we are the only people in this elder's life who will listen and lend a hand to improve their circumstances. Please help us to help our poorest and most vulnerable have an improved quality of life by allowing us to the time to do our job well, our elders deserve this level of quality case management and I6195 implore you to support this act. Thank you for your time and consideration SHOW NON-ESSENTIAL DIALOGUE
and thank you. I6203 think that's the risk for the panel. And so
uh are there questions from members? Not seeing any. I'm going6212 to to can anybody hear me right now? Mhm. Yes, please.
This is lisa burke. I've been trying desperately to get on. I'm just shifted. I'm wondering is there any more time for me to speak? Can speak quickly that6238 we're hoping to have some other people waiting to testify and we took it all out of turn okay
If we don't have to do it if that's okay. You know if you don't want to that sorry. Whatever works best. Mhm.
I am at a loss here. I don't know what to do here. Um You can speak but if you couldn't do that quickly then we will onto I think senator lovely is about to join us and then6268 she could, then we'll have to several more panels.
LISA BURKE - HIGHLAND VALLEY ELDER SERVICES - SB 399 - Okay All right, thank you. Thank you so much. And I'm sorry for the inconvenience, any inconvenience.6277 Um, I am a car ride advisor at Highland Valley Elder Services. I've been there for five years, it's in Florence and it's a rural area. So we do a lot of driving to elders. I have a case load of 130 on average elders. I work for uh senior care options uh program and um and we're contracted with uh, commonwealth Care Alliance. Um, I just want my main point is that um you know, it just seems like right now after having been there five years and seeing already a tremendous change in um the pressures on the case management and the types of cases that we have, uh there's just an increase in the seriousness of the illnesses, mental illness reporting issues. Um um uh housing is just huge.
So all of these uh sort of larger systemic problems come down onto our shoulders and we are now the ones that are going into people's homes, um and really doing hands on, kind of, you know, communicating with folks. Uh whereas even the model of care through commonwealth care alliance has changed and they're not putting their care partners into people's homes um in the same way, so our collaborations are very, very dependent on us as geriatric support service coordinators going in and painting a picture of what it is that we're finding. Uh but doing that right now, um in a lot of cases alone has has6382 shifted um the the level of um um pressure um on the case, the case managers. And so it just, it feels sometimes like a lot of the societal problems.
Um and, you know, issues with again, of6399 housing is tremendous. Um has sort of uh, you know, landed in our laps and it's getting worse by the month. So I just, you know, that that's my main point, is that the this is not the same job that it was even, you know, five years ago. Um and I'll just close by saying, you know, I had so many months last year uh die in their homes. Um and I was unprecedented. Some of it might have had to do with loneliness from COVID. They were not ill from COVID, but you know, that that kind of um shift in6436 um you know, the the sort of the the intensity of the needs uh6439 is just something that seems. So that's all. And thank you very very much for taking me and also for your time. SHOW NON-ESSENTIAL DIALOGUE
Well, I think we want to thank all of you who do this work. We can see how important it is.
And so thank you for not only for your testimony, but to you and your colleagues for your work. I'm just checking. Just need no. Okay. Um I'm going to turn now to a panel in favor of house 7 47 and sent at 3 97. We have Candice Kubel, I don't, I'm not sure. Jed gutter hein Geir high richard and Gretchen Reynard.
Are you all here? Yes, Thank you, Senator. Can you hear me? Yes. So um6493
CANDACE KUEBEL - MASSPACE ASSOCIATION - HB 747 - SB 399 - chair Jehlen and um and Stanley, thank you so much for the opportunity. I'm tempted to go off script a little bit here because um I'm going to talk about the program6512 of all inclusive6514 care for elderly, which is called PACE and you know, for the last two hours. I've sat here and I've heard about Alzheimer's, I've heard about home care intensive case management and all of these situations are ones that this program called PACE can address and has addressed for over 30 years in the commonwealth of Massachusetts. Senator Jehlen. I want to thank you and commend you for your support of this program in your district and rep Stanley.
I want to apologize to you that when we first met, you were aghast that you had never heard of this program because it didn't exist in your broader district. So I'm happy to say that we've been working long and hard with the state administration and we're hoping to ameliorate that. So this bill, um, well, I just have to digress one more time for those of you who don't know me. I used to work for mass home care. I worked uh with A L Norman and I'm the person who actually wrote and managed the grant for a program called Community Coaching Pilot in 2017. That absolute happened6583 to be the precursor to the intensive case management program that exists in the SMS today.
So you know, we are not, you know, we are all in this together and I am so thrilled to see that that program is now um in the in the hoping to go, you know statewide6608 and become codified because it is a needed program. But I also want to tell you that there is another program called PACE. That is part of the continuum of care for nursing facility eligible individuals who want to remain6624 living in their home over6626 90% are also qualify um as being financially eligible for Medicaid. So this legislation is very simple. It's um simply an act to increase awareness of community based PACE for older adults sponsored by Senator Harriette Chandler who already spoke and um Adrian Maduro who are both supporters.
They have PACE in their district. And um and what this bill does is it incorporates simple language into existing law so that PACE is included when individuals come into the communications gateway as an alternative to nursing facility level of care. There is6670 no cost associated with this bill. It is just codifying that state funded and supported information and referral sources include PACE as an alternative6684 to nursing facility care. So, um, my written testimony includes important information and details about PACE, its current scope, its future potential. It's tremendously successful um performance for its participants during the pandemic and the economics of the program for the state. So I encourage you to take a look at that. I'm not going to go through that.
Now, this is suffice to say access to PACE is limited and this legislation6723 will help ensure that the consumer information gateways, two Elder care services include PACE. So this fall we're going to do a big tour. We are going to6731 invite every legislator across the state and all of our elder care stakeholders to come visit PACE center so that when asked, you can tell your constituents by firsthand observation that this is an option Massachusetts should be is in fact the leader in the country and home and community based services and we need to shout it from the mountaintops. So, um, I strongly urge your consideration of moving this legislation forward and now I'm thrilled to introduce um Mhm Gretchen Reynard, who's one of our executive directors from Harbor Health Health Care Service plan and then Jed Geyerhahn, who is the executive director of our Cambridge Health Alliance PACE program CHA PACE. So thank you again and without further ado, I will turn it over to Gretchen.
GRETCHEN REYNARD - HARBOR HEALTH SERVICES - HB 747 - SB 399 - Thank you, Candy and thanks for having me today. Um My name is6796 Gretchen Reynard and I'm the executive director of the Harbor Health Centers program of all inclusive Care for the elderly, also known as the Harbor Health Elder Service Plan, Our PACE program with centers in Mattapan and Brockton serve approximately 488 participants and supports their caregivers as well. I want to share with you a story about a woman from Hingham who reached out to our Brockton site about two weeks ago on behalf of her mother, Philip's mother, Beatrice has been living with a diagnosis of Parkinson's disease for several years, 3.5 years ago, Beatrice moved6832 in with Phyllis and her family as she could no longer manage on her own due to advancing illness, even with the support of her daughter and family.
As her disease progressed, she needed additional assistance with her activities of daily living. For this, she's been spending down her lifelong savings to pay for home care services. Phyllis says her mom is about three months away from having her savings depleted and she's devastated that that at this time her only recourse will be to apply for mass health and go into a nursing home fate by the way that Phyllis and tears told me was worse than death for her mother. Now, as you are all aware, this is not true, but it was what they felt to be true. So to make this already long story a bit shorter, Phyllis reached out to an elder law attorney who assessed her situation and said it's too bad you live and hang him. If you were just over the line and Weymouth the Rockland, you could6889 enroll your mom and PACE.
So he suggested Phyllis give us a call anyway to see if there were any loopholes we knew of that would accommodate Beatrice. Is enrollment in PACE? Well, not yet. We're hopeful that soon the state will open up new service area zip codes for PACE including Kingdom. But here's the rest of the story. Not only did6905 Phyllis not know about PACE, she was sorely mistaken that the only long term services and supports that her mother could receive. Once enrolled in mass health were those provided by a skilled nursing facility, which we've already established would not be an option for Beatrice.
So this is a double whammy and one that this bill can help ameliorate by making information about home and community based services including PACE, more available and tangentially and hopefully by using this advocacy to encourage the state to allow PACE Organization PACE Organizations to offer PACE in unserved communities. This is the reality that you must certainly know exists in one for which there is simple, a simple no cost solution, which is better and more accurate information about home and community based services including PACE. Thank you again for your service to the commonwealth and for the opportunity to share these remarks6956 with you today. Thank you. And I think I'm handing it over to Jed.
JED GEYERHAHN - MASSPACE ASSOCIATION - HB 747 - SB 399 - Thanks Gretchen. Can I just get a thumbs up that you can hear me? Thank you. My name Is Jed Geyerhahn and I'm the executive director of the Cambridge Health Alliance Program of all Inclusive Care for the elderly, also known as CHA PACE. I'm also the president of the Mass PACE Association and grateful to have the opportunity to share my remarks with you today. Um first thank you committee members for your service, especially on behalf of rail older adults. Our PACE program not only survive the pandemic, but we are thriving and more and more consumers as more and more consumers are interested in coming to the program. That said nearly all of our participants come to us by way of referral from either an assisted living or from our own somewhat insulated insular hospital system.
Um are primary care physicians have received education and information about our PACE7011 programs so they are in a good position to refer patients uh, to us. And while we certainly thrilled to have these consumers joint base and appreciative of these captive referral sources were missing the opportunity to serve and even even more diverse and expansive group of consumers reside primarily in senator Jehlen district. These are the people who have, who most likely never heard about program called PACE and I will share such an example with you. Um, Mr. C was referred to PACE because he needs help with coordinating home health services. He needed help with food security, coordinating medical appointments. That most notably he was extremely lonely and in dire need of contact with people. When7054 PACE first visited him alone, he was receiving five hours of care a week of housekeeping, um, which means that he was referred for services but not for PACE. Unfortunately, the five hours of housekeeping was not meeting his needs. His medications were disorganized.
He spent most of his day and all of his knight and his recliner. Mr. C. Wanted to get a COVID vaccine, but he had not received because he was afraid to leave his home. As his advanced Parkinson's made it difficult for him to emulate the few stairs in his home. You won't be surprised to hear that since enrollment in PACE, his services are increased at home. And when we asked Mr., see how everything is going now, he said great. But I only wish I knew about the program sooner. Most people who are in need of extensive supports relaying and remain living in the community are not told about PACE. And this is extremely unfortunate on a brighter note. Unfortunately for those individuals who live in the CH A pay service area, PACE does exist. But we're very, very, uh, interested in having more people in the state learn about PACE and we think that there's a very simple opportunity to do this with this bill. So we thank you for your support for considering this opportunity. SHOW NON-ESSENTIAL DIALOGUE
Yeah. Thank you so much.7135 I'm glad to meet you. Don't think I ever have to now, but we do appreciate you. Are there? I think that's the end of this panel. So are there questions from members of the committee?
It is Mark, Go ahead.
REP GARABEDIAN - It's Representative Lipper Garabedian. Thank you. Thank you to the panelists and for everyone who is here today. This is really illuminating and educational for me. This is a new area for me. I'm a former seventh grade teacher, so I know a little bit more about the other end of the life continuum. Um, one Just clarifying question for your health information. You mentioned that there's really no cost associated with this, but I thought that I heard the sponsor senator um Chandler providing her remarks that there would be a cost, but it would be covered either by mass health or private insurers. And I just wondered if you could clarify that for me? SHOW NON-ESSENTIAL DIALOGUE
You're muted canvas.
KUEBEL - There we go. Okay. So, um, Senator Chandler is a huge advocate for us on two bills. The bill that she was referring to happens to be the community, what we call the community care bill and not this bill. The community care bill changes enrollment parameters on the basis of income eligibility and I believe she may have conflated the two bills for this bill. Um, there is no cost. It is to use existing referral channels and to um just put a little bit of language in there that they include PACE alongside the other HCBS options. GARABEDIAN - Thank you. That's very helpful. I think there was a conflation earlier, but I certainly understand how that could happen given how many things were all juggling at one time. I much appreciate it.
KUEBEL - Thank you. SHOW NON-ESSENTIAL DIALOGUE
Okay. Are there other questions? Oh, sometimes I miss. And so Representative
rep con.
REP KHAN - Yes. Thank you very much for letting me say a few words if you, if you don't mind. Uh, so I'm very familiar with PACE. Uh, I have a relative who is has belonged to PACE now. I probably close to 10 years. I don't know if that's when it began, but uh very long time and was referred by a social worker who really felt that this would be appropriate for him. And I really can't say enough about the program. I have to say that he gets the best health care of anyone I know. Um, if he has an acre of pain, he calls and they immediately assess what is happening. He's had some major surgery as a result of some of his um needs. And the one thing that I would just like to add is it really helps families Because in my situation there was always a worry because I'd get calls that he had called 911 and was often, I was a frequent caller of 911 when he had an acre of pain.
And this really has helped so much because you can actually go to the program. I think up to five days a week, you can have a meal there, you can be seen for every little ache or pain or whatever is bothering you. They check you over, they try to get you, so give you, you know, they get you on bicycles to get some exercise. I'm just really so impressed with it. It's a, it's a program that should really be across the country. Um, and in every city or town because it's just an amazing program in terms of what they do. And it relieves families because they know that there's someone that they can call. That person can call if they need help. And they are always responded to. And so I think they do some housekeeper, they can provide some housekeeping, some shopping.
I think they'll do some grocery shopping. And um, and then some just home health kinds of needs are taken care of as well. So I just think it's an amazing program. And as a legislator, we get calls all the time from families or constituents that need, you know, that are7405 needing health care, they need, you know, they have issues with this or that. And paste just takes care of at all. It's7413 an amazing program. And, uh, so I just wanted to add that. I just hope that we can support it and do whatever we can to make sure it continues. Uh, and I don't think there's any cost. I mean, it's the cost of the commonwealth or two maybe. I think it's a combined federal and state and certainly correct me if I'm wrong, but I think it's both Medicare and Medicaid and funded7436 and it's just very impressive. So7438 I just wanted to put in a word thank you.
JEHLEN - And I think you can buy in on a sliding scale. Is that correct?
KHAN - That I'm not, I'm not, I don't know about that, but I'm sure it does. I mean, this particular family member gets Social Security, so, um, he's able to use the Social7457 Security for his rent, he's in public housing and then a little bit left over for food. So I don't know if they get enough for food. Maybe that could be increased or improved because he does get SNAP, I think, or, you know, some of those programs he's eligible for, but it's not enough. They're not, they don't get much in terms of food. And uh, at this point he does get meals on wheels, but just needing, I think there's enough left over for, you know.
When someone goes to the grocery store for him to pay for some things.7495 But that's the only thing I guess I would look at is the food piece of it, how to manage that. But certainly in terms of health care, it's, I mean it gets better health care than I do just, you know, like7512 I said, you know, because sometimes the folks, uh sort of in that situation are very nervous about their health and so it is great that they can contact PACE Really. I don't even know. It might even be 24 hours a day. I think they can, they can really get the support they need. So I highly highly recommend it and it's eased up my worry in terms of not feeling assured that there is a person that can be called to get the help that one needs. SHOW NON-ESSENTIAL DIALOGUE
Thank you for your testimony. Thank you.
Thank you very much. I see that senator lovely has joined us and wants to speak
madam spear, yep.
SEN LOVELY - SB 418 - Um thank you Chair Jehlen and chair7554 Stanley and members of the committee, I offer my support of Senate number 418 an act7559 relative to expanding the availability of personal care homes for older adults of which I am the lead sponsor prepare homes for older adults would provide the option for a small group home environment from no more than six residents where older adults and individuals with disabilities can receive both housing and long term care services. Residents living these in these homes do not require services of a licensed law care facility, but do need assistance or supervision in activities of daily living. Smaller homes gives residents a chance to get to know one another better and Uh build important social networks.
Nine other states have successive successfully created a system of personal care homes. This bill would enable the ASEP network to partner with housing providers to convert houses into small group homes. It also establishes licensing procedures to the Massachusetts executive Office of Elder Affairs and creates a spending model for the small group homes that include two distinct funding lines. To ensure the financial viability of the program, Personal care homes would allow more seniors and persons with disabilities because we need without entering entering into a7641 large care facility that may not suit their wants and needs. For these reasons, I literally reiterate my support for Senate quarantine. I respectfully request the committee's positive consideration. Thank you7652 SHOW NON-ESSENTIAL DIALOGUE
and thank you. Are there questions for the senator? And I wanted to add my appreciation for your advocacy in7659 many areas for more, more dignified opportunities for7662 care for older people, including veterans.
Moving along. The next group I see is a panel on seven House 754 S 411. We have kelly turley morrow, sayid and judy. D. Gustafson, are you all here?
KELLY TURLEY - MASSACHUSETTS COALITION FOR THE HOMELESS - HB 750 - SB 411 - Thank you so much. My name is Kelly Turley and I'm with the Massachusetts Coalition for the homeless and I'd like to thank you for this opportunity to testify in support of House Bill 750 Senate Bill7698 411 and act7699 relative to assisting elders and people with disabilities in the commonwealth. This bill was filed by chair Jehlen along with Representative O'Day and it seeks to make necessary and permanent changes to the state's emergency age, the Elderly, Disabled in Children Program, EAEDC. It would build upon positive changes initiated by the Legislature through the state budget process over the past several years. The EAEDC which is administered by the Department of transitional assistance, currently serves just over 20,000 elders, people with disabilities, children, caretakers and immigrants across the state.
While EAEDC. Is a critical lifeline for the program, participants, all of whom are living in deep poverty. We need to do more so that the EAEDC reflects the commonwealth values and priorities and better meets the needs of our neighbors, especially um black Latinx and other EAEDC participants of color who are over represented in the program and overrepresented among people experiencing homelessness, housing and stability, living in poverty and impacted by COVID 19 here in Massachusetts. This bill would do four things. It would increase the monthly EAEDC grants create an annual cost of living adjustment for EAEDC program, participants Increase the allowable personal asset limit and update state statute to reflect the 2018 removal of the homelessness penalty.
Grant increases are especially critical while the typical monthly grant was increased this fiscal year, FY 21 excuse me? For the first time since 1988. EAEDC benefits remain very low, with a household of one currently receiving $334 a month up from $304. This bill seeks to match levels provided under the Family Cash assistance programme, transitional assistance for families with dependent children. But we know that at the TFTC. Level or the current EAEDC level, participants will still struggle to pay for housing, utilities, food, medical needs, personal care items, clothing, transportation and other basic needs. So we must work on an ongoing basis to increase grants and that would include by providing an annual cost of living adjustment.
If EAEDC. had kept up with inflation, the 1988 grant level that was in effect until the7834 beginning of January of $303 a month would be at almost $700 a month now $691 per month building in a cost of living adjustment equal to or greater than the US consumer price index increase so that DTA can provide increased benefits in response to the wider economic conditions would7850 ensure that participants do not fall further behind year to year. Um as I mentioned, the bill would also increase the personal asset limit. It's currently at $250 for a household of one and $500 for a household of two or more. Um and this would increase it to 202,000 $500 and $5000 respectively. But we do ask in light of changes proposed in the FY 22 budget, that's on the governor's desk, that this bill be revised by the committee to actually eliminate the asset limit um which was which is included in FY 22 budget.
Uum so that we don't have extremely low income elders and people with disabilities excluded from the program due to7892 assets. Um The bill also would exclude the value of one vehicle, and we know this is especially important for program participants who live in areas with limited public transportation or non existent public transportation. Um And then finally, the bill would officially remove the homelessness penalty, also known as a shelter reduction for people experiencing homelessness for over 30 years. Participants in EAEDC Who were experiencing homelessness had their monthly grants reduced by 70% each month because the state team that they didn't have Um shelter expenses so they didn't need this full grant. So if we talked about these grants are extremely low and so we're really grateful to the this committee in particular um for advocating to make sure that through the state budget since FY19 the homelessness penalties has been eliminated.
But we want to make this change permanent. And so we ask you to move this bill forward and to relegate the homelessness penalty. The history books permanently. Our shared commitments to social justice, human rights and human dignity compel us to take action to further improve resources and supports for EAEDC participants and until we are successful in making changes permanent and meaningful. So we ask you to build upon the positive momentum for EAEDC That we've seen through the state budget by giving a swift in favorable report to this bill and continue to support it throughout this legislative session. Um really grateful for your time and your consideration of these requests and for your dedication to addressing poverty, inequality and housing and stability. And I'll turn it over to my co panelists Juty. I think it's going to go next. Thank you.
JUDY GUSTAFSON - HOMELESS IMPROVEMENT PROJECT - HB 7540- SB 411 - Hi, my name is Judy Gustafson and I am here to support bills H 750 and S 411 I am a volunteer office manager for the homeless improvement project in Brockton because at one point in my life I was homeless In 2012. I came down with chronic medical issues that culminated me leaving a job that I had held for 27 years and I searched for work I could do was unable to find it. And I applied for and eventually received SSDI um as we all know that's a long process. And in the8021 middle of that process I became homeless because I had no income and you can't pay rent with no money. So I was very very blessed. I had dear friends who took me in. They gave me a place to live well.
I completed the process of applying for SSDI and while living with my friends I did apply for and receive EAEDC benefits and I would like to speak to the need to increase the EAEDC benefits I was and am very grateful that I received them. At that point in my life, $304 was an awful lot better than $0 a month. But it didn't go far enough, especially since I'm a single mother and my daughter lives with my ex husband because of my medical issues. But we, she and I were unable to meet basic needs with that amount of money. Just prior to when I say it was homeless, I was living in my car. So just prior to moving in with my friend, I'm sorry. Just after8080 moving in with my friends, I lost my car because I had no income. Um, so I really believe with all my heart that there needs to be a cost of living adjustments so that people who are in a difficult situation such as I was in at that time do have enough to meet their basic needs.
Um, I would also like to advocate strongly for the need to permanently do away with the homelessness penalty penalty. It needs to be removed from state statute in my situation, I was very honest with the people I spoke to and I applied for EAEDC benefits and because I was living at my friend's house, they did not feel that I qualified as homeless so I did not lose8122 any money. But had I still been living in my car, if my friends had not8126 found out about my situation, if they had been unable, if8130 they hadn't had a room that they could take me into, I would have lost 70%. I believe Kelly, please correct me if I'm wrong. But 70% of my income and living outside what do you can live on that? That's awful. I think that the assumption.8145 The general assumption. No. No reflection at all on this committee who has been so supportive of people who have spoken. But I think the assumption is that benefits are cut because homeless people have access to the shelter system.
But I assure you that that is not always the case. I work with people daily as the office manager for the homeless improvement project. I work with people daily who sleep outside in the city of Brogden and they sleep intense if they have them wrapped in blankets and parks. And I promise you that many of these people are seniors. The I know a woman, 67 years old, thankfully she just got housing, but she was sleeping in her car because our family, she's, she's alienated from her family. Just a very sad situation and many of these people have no money and if you look at the programs asset assets limits the little that they have, may cause them not to qualify for these benefits. So I would really, I'm not gonna take too long. I know it's been a long meeting, but I just really strongly want to advocate for you to consider this bill and supported and I thank you for your time SHOW NON-ESSENTIAL DIALOGUE
and thank you. There's one more person speaking. This, is that correct? I wanted to withdraw my request to testify. Sorry. This is marla said I wanted to withdraw my request to testify. Oh, well thank you for being here. Uh, let me peek and see who the next.
Excuse me, Senator Jehlen. Oh yes. This is, this is Meg Coffin I had registered um, a panel to testify um, for um, Age 7 45. I don't know if you skipped us or personal care homes, dignity, Alliance Mass. Oh, I'm sorry. I don't have you on the list. We did have that. We did take up that bill. Um but I didn't see you on the list. I apologize. Um
but I think we finished this panel. Let me finish.8272 There's one more panel and then can I come back to you? Yes. Thank you. And I tell me who you were so I can meg coffin coffin. Okay. I'm going to come back to you. I apologize. I don't know what happened there. Thank you. And I just also want to remind people that there has been written testimony received on several bills which I haven't even announced, but we will be reviewing that as well. So don't worry. Okay. There will be actually besides
mm Megan. Um there will be a shira Ruiz and someone else. Okay I apologize And we'll go on now to um 752 and 405. We have val frias and then uh lisa, Krinsky, Julia trip and carry gels
gel. Um, so if you all could come forward and then we'll go back. I believe the only thing left with then we'll be, uh, people from dignity alliance and I can apologize. Okay. We have 7 52.
Well, um, I guess I'll start Lisa uh
VALARIE FRIAS – ETHOS - HB 752 - SB 405 - Chair Jehlen Chair Stanley, my name is Val Frias on the CEO of Ethos, which is one of the 25 ESOP in the state of Massachusetts. Uh, I'm here8368 to support Senate Bill 405, House Bill 752 an8374 act relative to Massachusetts home care eligibility. I'm submitting forward and testimony and in in an8385 effort to uh keep us on track with time, I'm just going to give A couple of highlights. Uh, this bill would lower the age of qualification for home care services to 50 For those who are HIV positive. Currently, home care eligibility begins at age 60. So this would cover those in that age between 50 and 59 and 364 days. Ah Senator Jehlen, that was the Senate sponsor of this bill. And there was this bill. Well, I testified on this in the last session as well. While it's a small number of people, it impacts them tremendously. We're talking about a group of people who are long term.
Um, survivors who have been living with this uh for decades and whose whose life expectancy uh has obviously grown that, but they've been on medications for a very long time and um, on average have aged about 15 years beyond their chronological age uh in terms of um issues that they're dealing with medically. So we're talking about some of those, uh there's there are HIV associated8500 neurocognitive disorders, liver disorders, lung disease, um, certain types of cancer and and things of that nature that impact them tremendously. Uh, and again, this is not a large number of people, but it is 50, 50 and older population is 62% of those living with HIV in Massachusetts. Yeah. Right. Right now we're talking about a community based care approach that would uh, that8530 would cost the commonwealth. About a third of what, uh, either hospital admission or an admission at8537 a nursing home, what would cost the commonwealth?
So, in terms of both being the right thing morally to do and the right thing fiscally to do, uh, this bill covers both of those aspects. And while I'm here in my capacity as CEO of Ethos, this is also a very personal bill for me, my my uncle, who now is above 60 and and qualifies for for home care was infected with HIV in the 1980s and was someone who ended up in the emergency department and uh in skilled nursing facilities far too often when he could have have been provided services that kept him at home. That kept him less isolated, unable to connect to community and two programs. Um, I'll just finish up by saying, we're talking about a group of folks who are now who have now suffered too pandemics and epidemics essentially. Uh and I asked that uh that the committee support this and and that would be taken up for a vote as soon as possible. And I will8609 turn8609 it to Lisa Krinsky SHOW NON-ESSENTIAL DIALOGUE
Thank you for your time. Mhm.
LISA KRINSKY - LGBTQIA AGING PROJECT - HB 752 - SB 405 - Thank you. Good afternoon to the chairs and members of the, of the committee. My name is Lisa Krinsky. I am8618 the director of the LGBT+ aging project at Fenway Health. And for 20 years the aging project has worked uh toward equity, inclusion and community for LGBT older adults. Yeah, ensuring that they can age with dignity and respect that8633 they deserve. And we would like to go on record in support of this bill8642 and act relative to Massachusetts own care eligibility and urge you to report the bill favorably. Um We have much to be proud of in the commonwealth leadership on8651 LGBT aging. Uh, our LGBT Agent Commission we want to chair, remains the only statewide commission uh in the country and we also have first in the nation legislation requiring LGBT cultural competency training for our statewide network of elder care providers.
And um, today with this bill, we have an opportunity for leadership yet again, uh supporting individuals who are living in aging with HIV and AIDS and who are experiencing The health and functional complications that meet the state home care programs eligibility criteria, but not yet meet those criteria. Um in the world of HIV and AIDS, 50 has long been considered old. Many folks did not live long enough to get to that age. Uh and many are long-term survivors living with HIV for more than 20 years. They have been pioneers through this epidemic uh and never even imagine growing old and they continue to be pioneers as we look at the intersection of the illness, long term impact of their medical8710 treatment and the inevitable experiences of aging. Um The irony is that uh these elements of old age have arrived before our state's definition of old at the age of 60.
Um and so imagine yourself at 57 having lived through8727 many years of HIV having lost friends and illness uh and needing that assistance that we've heard about today, bathing dressing, transportation, uh potential nursing home placement because you're three calendar years younger than the eligibility criteria despite functioning at the level of someone 10 or 20 years older than you are. Um We have an amazing robust state home care program. We've heard a great deal about it today. Um that really adds to the quality of life for so many people. Um we've also heard a lot today about the experiences of those living with early onset8762 Alzheimer's and understanding the need to support those who are not yet 60 but are facing the impact of an older person's disease.8769
We think the same is true for folks who are aging with HIV. So on on behalf of those who are aging with HIV, I ask you to provide them with access to the state home care program and remind you that doing so is one of the priorities of our long term aging commissions, long term services and supports priorities. Um as Val said, uh, this access will not open the floodgates uh nor will it incur significant costs for the commonwealth. But it will recognize these long term survivors and pioneers and for them the opportunity to benefit from the services and supports that will enable them to live independently in the community, their community with the dignity and respect they deserve. And I thank you for your time and consideration. SHOW NON-ESSENTIAL DIALOGUE
Yes, thank
you lisa This is Carrie from Fenway health. I just want to um say Julia Trip had to had to leave, but she will be submitting written testimony. Oh, she's here. Julia is still here. I'm so sorry Julia, I'll pass it to you then next
Okay, can you hear me? Great.
JULIA TRIPP - CONCERNED CITIZEN - HB 752 - SB 405 - m thank you very much for being given the opportunity to testify. Um My name is Julia Trip. Um and I'm going to be giving you a personal testimony which which has been reflected in some of the wonderful stories, but with the additional layer of living with HIV. Um and this is in respect to Bill center for Senate 405 and the House 750 act relative to Massachusetts home care eligibility for people who are less than 60. I looked at my life in terms of um Decades and where things began to go south. I was diagnosed in 1996 with HIV. Uh I had been at that time a drug addict and I been a drug addict for about 11 years. Um I came from a deep history of trauma when I think Lisa mentioned to pandemics, I was thinking that in addition there's like this third layer pandemic pandemic or epidemic, if you will, of trauma, uh sexual abuse, domestic violence, um, that also preceded the infection.
Um, moving with HIV. So, I, in the beginning when I got diagnosed, I thought back really, really hard. Um I knew it was, I began to read and learn, I knew it was ahead. So I began exercising eating well. I got hired to work part time, I started getting involved in the community and I got hired to work part time at a policy center where I began to learn about causes an effect around, you know, homelessness, which I was also homeless during the years. I was addicted about HIV about mental illness while struggling with an increasingly difficult housing environment. Um, depression, massive depression. I began experiencing mental memory loss and I had to monitor my health and the growing health challenges. Um and I learned about the multiple layers of social and health issues and inequities um such as discrimination, poverty, childhood produce domestic violence, and these are predisposed me to HIV risk and ongoing, continuous physical deterioration on pretty much every level.
Um So during the decade of 2006 on, I was 51 at that time.8955 Um those mental health and physical struggles began to be really burdensome, but I had begun working and out of the HIV community. It's one of the few who took that chance a lot. We're afraid to go to work because of stigma8975 because of some of the things people are experiencing later on, who may be living with HIV May even be housed and um AIDS housing, but they were afraid to go out in the community. I being bold and brave, I went out there and work and found myself stuck. Um I was stuck up there as my health began to deteriorate because my I was over income and I had to wait a year and go back into homelessness and I refused to do that. Um but my help again to really deteriorate, I sold it on. Um I did when begin winning awards, I inherited some money from the unfortunate death of my9008 son.
I was able to buy a condo. Um but I was trapped and then by 2020 2008 the housing market collapsed. Um But9015 it was a nonprofit that helps something else happening. Sorry, that was my thought. Many people talked about the issues of some of the9022 associated issues affording. This was something that I struggled with and I know how Gigi felt that Virginia multi Iraq mentioned. Um I fought with it though and I got help here or help their, you know, different places, but it was9047 never enough and never enough to really, I'm still struggling with it, but I managed to maintain it just right about here. I can9055 still get in my house, it's usually fairly organized, but it's a real problem and I couldn't get help with it. Um So I didn't qualify for home health care aide in that decade between 51 and where I am now at 66, I finally qualified, but I had to go through a lot to get that. Um I did get, like I said, in an adequate assistance, but by then I was I was also struggling with suicidal ideation.
Now that's hard to admit because there's a lot of there's a lot of shame around that. Um and there's also a result in exclusion. People talked about some of the aspects of, you know, agents such as dementia. I gotta tell you try adding, you know, being HIV positive and suicidal and the treatment just sort of goes out the window, the support, the care. I also left family support. I don't have. My only son was lost. My family rejected me. Um not only as a result of sexual abuse that I was the primary victim of, but also the younger and drug addiction. And then HIV I didn't belong. And so no matter what I did in the community, I never matter to my family. So I was stranded and left without the support. Um By the age of 58, I was, however, still working through increasing back pain and arthritis, which had been present. And it just increased. And in 2013, I ended up with a cancer diagnosis. I recovered and I'm still in remission, but I never regained my former wellness.
Um in 2016, I was laid off from that job that I had as a policy person uh researcher at a policy center U. Mass. And then I was hired for a year to be in an executive director. But I had to step down because I took on the care and the scene of an elder brother. And so and also mentioned that how some of us who are have these disabilities also have to care for others. And indeed9165 I did. Um But my knee and back pain was unbearable and when he asked me to help him, I stepped down, I brought him home. He was suffering with dementia um and diabetes when I was his caretaker. And meanwhile my own health was going down, but it allowed me at least pay the mortgage on my condo. But then he got so sick and he started becoming uh violent ideation, they had to remove him from the home and there I was without a job, without income. Um and I couldn't afford the mortgage in the housing market had collapsed.
I ended up having to leave my home, so I lost at that time, I also had to torn meniscus in my knees. They were now down, being worn down the bone on bone, my back was out of alignment, and I was, I had had an undiagnosed, mild scoliosis from childhood, which was making itself felt and difficult walking. Um then, Um at the point that I had to move, the9213 man that I had worked with at the nonprofit that I managed was a homeless man. He was 78 years old, had just been released from jail after many, many years of uh, of incarceration. And it was him who helped me. I couldn't get help from the system for the kind of the depth of packing and getting rid of stuff enable to move into senior housing, which I successfully did three years ago. Um, Carl's Cortina wrote that people with living with HIV are less likely than the general population to have partners children and supported families.
This is exact case for me and it's an ongoing and very painful reality. Um, I learned when I joined the program that started at AIDS Action on advocacy for people who are questions. Um, I learned I thought I9264 was only 10 years aging faster and I was doing everything I could to fight. It turns out Sadly, it was hard to accept that there is no, it's9275 15-20 years and now it's really being felt. Um I also had early onset dementia and what I struggle with. I can't even get a diagnosis that keep telling, you know, you don't have, you don't have dementia, don't have Alzheimer’s, but why have I been forgetting things? I work with lists. Like even now I have an extensive noted notes to work from. Um I have a lot of memory loss and it's contributed to my hoarding. I know that um finding things and having to find them and discover them over and over again.
Um I also have developed neuropathy, acid reflux, sleep apnea arthritis again, you know, ongoing depression, body paying and isolation. Um but I also had the fortune or misfortune however you want to look at it to observe nursing home care. Both my brother was in the north had to be moved9326 within the nursing home system as well as the homeless man that helped me. I am now his health care proxy and power of attorney and what I have seen in the nursing home system is downright frightening. In addition, many years ago, I was an advocate for a woman who was living with HIV who part of her release arrangements had to go into9353 a nursing home and the way they treated she was living with HIV, the way they treated her. I knew this is not, I could not, I could not, but that happened to me.
What I saw both my brother and9365 this homeless man, especially with my brother and then a recent experience, I just had a knee replacement surgery because my knees are, they want to do both of them. The two weeks that I was in a nursing home, All of this has shown me that nursing homes are one of the most frightening places to be and is if, if, if living with Alzheimer's and some of the other aging associated illnesses, it will create circumstances where people don't feel that they're getting the kind of health care they need at HIV and, and dementia and all of it wrapped up. It simply is not acceptable to me. I've decided that I want to die in my own home with dignity. And I ask you, is that too much to ask?
JEHLEN - Um I just want to thank you so much for your personal testimony, which is, I think you've put a real face on the struggles that people face and also given us hope because you have struggled through and and survived and are9421 prospering and in a better way than you might have expected. SHOW NON-ESSENTIAL DIALOGUE
So I want9424 to thank you for your testimony. Uh, and I9428 didn't know if Kerry9429 wanted to add to that.
CARRIE RICHGELS - CONCERNED CITIZEN - HB 752 - SB 405 - Uh, thank you Chair Jehlen and members of the committee. Um I just want I don't want to um take up any more time or repeat anything, but I just want to highlight a couple of things about this bill. Um, Fenway health is9446 uh in support of an act relative to Massachusetts home care eligibility. Um I just want to point out that this bill um would ensure long term survivors the same access to healthcare services that9455 they need to age with dignity as their HIV peers. Um and it's without AIDS H stipulation, so um9461 it would allow them access to these services regardless of age, um and just to reiterate that today's LGBTQ older adults are9469 less likely than the general population to have support systems um from their families of origin.
And just lastly that it's vital9477 for people living with HIV and AIDS to remain connected to their health care providers9482 and stay engaged in9483 their treatment plans. Um Adherence to treatment is a crucial part of a patient maintaining an undetectable viral load. Uh and home care services would provide that additional link to strengthen the continuity of care for long term survivors. Um So for all these reasons premature aging um and sometimes an unfortunate disconnection with their families of origin were supporting this bill and we ask that the committee reported favourably. Um and again, uh it would allow people living with HIV and AIDS access to home care services um when enough of the clinical requirements are met regardless of age. Um So thank you so much for your time SHOW NON-ESSENTIAL DIALOGUE
and thank you. Thanks.
So you I did have another point that I wanted to add, Do you have a cannelloni? Another one minute? Sure. And then we'll go to the next panel. Okay.
TRIPP - I just want to add that. Um There are improvements however, that are needed even within this and I know it's a little bit early, but I want to just say this that we who are disabled are very vulnerable. There's no protection or support if there are violations or expected exploitation. Many of the helpers are not vetted. Um, and someone mentioned earlier about the paranoid that people feel with something that's real. Um if they have to do your food shopping, they need9576 your food stamp password. I felt very uncomfortable with that. That's not very good. The helpers are not well trained people think that housekeeping and cleaning is a non-skilled job, but it requires9585 skill and why is oversight.
Um, you are also made to feel like you can't complain to the agencies and that's not right. So there's poor oversight by the nonprofits to provide these services. Um and they don't seem to care for the quality of the staff that they hire or the compatibility and that's my experience. Um, but also the9605 workers seem to be exploited by nonprofits. There's no overtime for we can work or paid holidays. And I think that's really unfair and people have spoken to some of these issues and I just want to reiterate that began. Thank you and please, um, consider, uh, this bill favorably, Bill 405 and 750 House and Senate. Thank you
JEHLEN - Thank you again. And I'll just point out that if there is problems with lack of training or experience for workers, we could point to the need for paying people enough to live and keep it the job. So I hope that, that I expect that that will continue to be a priority for all of us on this committee. So thank you for bringing that back to our attention.
Thanks very much. Again. Now I'm going to go back to the people that unfortunately got left off on a previous panel. I don't, you know where that list is. Oh yeah, that's it dignity Alliance, Mass, dignity Alliance. But I don't know make SHOW NON-ESSENTIAL DIALOGUE
thank you so much.9663 I apologize And to, uh, you bring your panel and introduce them please. Yes.9668 Yes. Um, I'm a coffin. Um, smith Samantha Benn shook and um, yeah, Teresa Ruiz will also be speaking. So okay, we will, we won't take much time, but we are here to9679 two last panels. We saved the best for last.
MEG COFFIN - DIGNITY ALLIANCE MASSACHUSETTS - HB 752 - SB 405 - Um, you know, we're here today to support the act to establish personal care homes in Massachusetts. Um, I want to thank you all for the opportunity for us to speak amid cough and I'm the9704 CEO at Center for Living and working and a member of dignity, dignity Alliance Massachusetts For decades, thousands of older adults and people with disabilities in our state who are perfectly able to live at home with adequate supports have been forced to live in institutional and congregate settings such as nursing facilities. Not having a choice and where they live has diminished their dignity and independence. And during the COVID-19 pandemic, it is tragically cost far too9734 many their lives institutional and congregate settings Put these individuals at a much higher risk of infection and death.
To remedy this injustice, dignity. Alliance Massachusetts recommends that home and community based services be recognized as an essential component of long term services and supports that every person eligible for institutional care has the right to access home and community based services as required by the American with disabilities act. The US Supreme Court's Own sense decision and Massachusetts 202,000 and six Equal choice law.9763 Personal care homes are one option in the long term services and supports continuing that gives older adults and persons with disabilities an opportunity to live independently in the community, especially those who may not have an informal support network which is often needed. It will offer another community option in a state where availability and affordability of accessible and where availability of affordable and accessible housing is at an all-time low.9793
This option also allows residents to share home care staff will be assigned to each home, easing the need to find a PCA in an employment sector that is critically understaffed. Currently there are over 31,000 individuals living in nursing facilities in Massachusetts and many of them have the capacity to live in the community with the appropriate services and supports As a commonwealth, particularly in light of the last 15 months with the COVID pandemic,9823 we want to continue moving away from institutional settings for older adults and individuals living with disabilities and make living in the community with the appropriate supports, the setting of choice Building on the success of the 2006 Heart Home Pilot Program, Dignity Alliance Mass. Hopes personal care homes will be just one of numerous affordable and accessible community housing options available for older adults and those living with disabilities. And I'm going to turn it over to uh Samantha. Thank you. SHOW NON-ESSENTIAL DIALOGUE
Actually, I think you're sure I was going to go now. I'm sorry. Before that I just want to recognize, I don't know how long she's been here, but Senator Goby has joined us or thank you. Yes, I was I was late to the show. I apologize, but thank you, madam chair. It's harder to see people in this environment, but I'm glad you're here. Okay. Who's tonight? You're sure is next. I'm sorry. Okay, sure.
Yeah, sure.
Wow. To me. To me,9886
Sure. Is it possible that you're in the meeting in two different like do you have this open in two different browsers? It kind of looks like it. I see you on the screen twice and that's probably what's causing the echo.
Mhm.
Is that better? Oh,
the digital divide. I love it. Um Hi, let me is my camera and it is high.
YASHIRA RUIZ - DIGNITY ALLIANCE MASSACHUSETTS - HB 752 - SB 405 - Uh so my name is Yeshira Ruiz. I'm a member of the dignity alliance of Massachusetts. Currently I'm also the director of services at stavros Center for Independent Living. Located in Amherst, where for the past 19 years I've been advocating for the rights of persons with disabilities and older adults. So I just want to thank all the members of the joint committee and and lower fares for this opportunity to provide my testimony and ask for your consideration on the expansion of the availability of personal home personal care homes for older adults. In my experience, there are two significant barriers faced by older adults and persons with disabilities residing in long term care facilities who want to transition to less restrictive and community settings, one being limited access to accessible and affordable housing options and to being um they're available their availability10002 to access home and community based10003 services and supports.10004
These barriers significantly extend the time a person remains institutionalized. The lack of infrastructure, physical accessibility and affordable housing options are10011 a few examples um that individuals who are institutionalized face when initiating their transition plan and exploring10016 their housing options As we meet today. The independent10018 living centres of Massachusetts10019 are working with the Department of10021 Housing and Community10022 Development on a pilot program that has set aside 50 housing vouchers to be assigned through a lottery, throwing two individuals currently institutionalized institutionalized in long term care facilities that are working on their goal to transition10036 to their community.
The applications submitted10038 for the short10039 term pilot program have already10041 exceeded the voucher availabilities, strengthening10043 the case that older adults and10045 persons with disabilities want10047 to leave long term care facilities10049 and live in less restrictive10051 um settings. In addition, there are limited10055 spots available for Breitbart programs that provide home and community based services. Examples10061 of those10062 programs in high demand, but with low capacities are10066 the acquired brain injury waiver programs, the10070 Moving Forward plan residential program, both which provide residential options and additional10075 home and long term services and supports the availability of personal care homes, would give10080 older10080 adults choice and it would also allow them to help break the housing roadblocks that deny them choice to community living um, and keep10091 them institutionalized in long term10093 care facilities, as mentioned by previous speakers.10095
The regulatory10096 framework10096 for this expansion exists and examples like the two wavered programs that I've previously mentioned In the last year, 64% of the referrals received at Stavros Center for independent living for assistance with transition from long-term care facilities to a less restrictive community settings worse10115 brought to us from10117 older adults with disabilities.10118 Your support for care homes for personal care homes would allow older adults and persons with disabilities to access their communities live their lives with dignity and less restrictive settings of their choice and10134 with appropriate home and community10136 based services supports. I just want to say10140 thank you for your time and your consideration.
SAMANTHA VANSCHOICK - DIGNITY ALLIANCE MASSACHUSETTS - HB 752 - SB 405 - I believe10144 I'm next. Uh, thank you. Thank you for giving me the opportunity to10148 speak today. My10151 name is Samantha VanSchoick. I am a resident of Lawrence Massachusetts and I have the pleasure10158 of serving as the communications work group10161 co-chair for the dignity alliance. In addition to my work as the director of strategic partnerships for the10168 Corporation for Independent10169 Living or CIL.10170 CIL.is a nonprofit that10172 specializes in developing licensed community residences for persons with developmental and other disabilities. Uh,10178 formed in 1979. CIL has developed over 750 licensed community residences10184 in Massachusetts and Connecticut. While most of those homes have been developed under long term lease10190 donation agreements with private providers. We've also worked directly with DDS and DCAM staff on about 60 state operated residences.
A little history CIL, was developed was created to not just be a developer10197 for people10198 with disabilities but to be an advocate for people with disabilities. Amass10204 social10204 movement was under way to10209 eliminate the social isolations of persons with disabilities and to provide them with the10214 dignity, the better care and the self-autonomy10216 that can only be found in community based socially integrated home like settings. Thousands of persons were able to move from large, socially isolated um large socially isolated institutions to homes and apartments in a variety of10229 urban, suburban and rural neighborhoods. A critical element of this10233 movement was the recognition10234 that disabled persons10235 have a right to control their environments, to control who comes into their homes to live where they want amidst non-disabled persons and to have homes that they could call their own. older adults have been left out of this deinstitutionalization movement.
And the main message I10256 would like you to take away today is that community residences or personal care homes provided for in this bill may be new for this population,10265 but they are not new to the commonwealth and they are an10269 important housing option for people have access to. Most recently,10273 we've seen the successful outcomes that come from making it possible for new populations to have access to these home environments. With10280 the offer mentioned acquired brain injury or ABI10282 waiver program. I'd like10284 to share one such success story with you today. So my favorite part10289 of my job is when I get to visit the homes that we've developed and talk to the people that are living in them. Um and today10301 I'm going to tell you about a resident of an10304 ABI Home we developed in10306 the Plymouth area.
Uh Judy lived and10308 worked most of her life in10310 Massachusetts and even worked at the playboy club in10313 Boston as a server for many years. Um something that she was very proud to tell me and10320 she has this huge photo from those10321 days framed on her bureau. Um and10324 before Judy moved into her new home, she had been living in a nursing home. And this is a direct quote from Judy. I was really worried before I came here because I didn't know what was going to happen10337 to me. I didn't want10338 to be in a nursing home10340 for the rest of my life. We are really lucky. What Judy calls luck, I call important policy, good policy centered in dignity, choice and respect. I urge10352 you to support the personal10354 care home legislation and thank you for the10356 time. SHOW NON-ESSENTIAL DIALOGUE
Well, thank you all for your10358 patience and your testimony on your work. Are there questions from members of the committee
who have also persisted? Thank you.10364
I don't see any more questions.10365 I just think that today's testimony ending with the fact that10370 uh, the people who need these services have not always been in that10375 situation, but they've had important and active lives. And thank you for that reminder. Um, and so I think today10381 was a very important day in demonstrating some of the work we10387 have to do, make10389 sure everybody has a choice to live in dignity and safety. So looking forward10393 to working with you10394 all. I was seeing no further questions10397 or testimony. I would like to hear10399 a motion to adjourn.
10400 So moved. Yeah. And 2nd by the chair. All in favour.10403 All opposed. And thank you very10404 much for10405 your testimony and10408 your persistence. Thanks. Bye. I think today was a very important day in demonstrating some of10443 the work we have to do, make sure everybody has a choice to live in dignity and safety.10452 So looking forward10453 to working with you all. I was seeing no further questions or testimony. I would like to10460 hear a motion to adjourn.
So moved. Yeah. And 2nd by the chair. All in favour. All opposed. And thank you very10471 much for your testimony and your persistence. Thanks. Bye.
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