2023-05-11 00:00:00 - Joint Committee on Consumer Protection and Professional Licensure
2023-05-11 00:00:00 - Joint Committee on Consumer Protection and Professional Licensure
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My name is state senator John Crohn, and I have the privilege to service cochair of the joint committee on consumer protection and professional licensure. I'd like to welcome everybody today to this public hearing. We're considering two bills before us. Senate number167 152, enact expanding wheelchair169 warranty protections for consumers171 with disabilities. And house number three 78, an act expanding wheelchair warranty protections for consumers with disabilities. I'm pleased to be joined by the Vice share of the committee, Vice Chair Keith today. And I'd like to turn it over to her to introduce house members.
Great. Thank you. Chair Croden.
So I'd like to recognize a rep Donahue that is with us here, and I think we have some other members that will be joining us. Uh-huh. Oh, I'm sorry.
And online, we have representative Labuff, representative Reyes and Representative212 Howitt, and we'll continue to recognize people as they arise. So Thank you very much for coming today.
Thank you very much, madam, Vice Chair. I'd like to remind everybody that the committee will also be taking written testimony as well as in person testimony and remote testimony today for all those who have signed up ahead of time.
Reminder to everybody that the hearing is being live streamed and recorded for later viewing on the General Court website, at massmutlegislature dot gov. And that246 testimony is limited to three minutes per person. We have a number of testifiers here today. To share their their stories and submit testimony. So there will be a clock and a timer running behind me. I just ask everybody be considerate of the number of people who are here and are here to be heard by the committee.
Alright. With that, I'd like to invite our first panel up. Shane Blondell and Anne Lynch from the attorney general's office. To submit testimony.
And I believe they287 will be joining us virtually.
ANNE LYNCH - ATTORNEY GENERAL'S OFFICE - HB 378 - SB 152 - Yes. Thank you. Chairman Cronin Vice Chair Keith, and members294 of the joint committee. Thank you296 for the opportunity to testify today. My name is Anne Lynch, and I am an assistant attorney general in the civil rights division, as well as the disability rights coordinator at the attorney general's office. I am here in support309 of House Bill 378 and senate bill 152, an act expanding wheelchair warranty protections for consumers with disabilities.317 Filed by Senator Cronin and Representative O'Day. In operable or otherwise broken or unsafe wheelchairs.
And long waits326 for repairs are persistent and long standing problems for the approximately 2.3% of Massachusetts residents who rely on a wheelchair. Our office has received numerous complaints from consumers. For example, a 12-year-old needed repairs to his wheelchair as well as adjustments to ensure that it fit his growing body. His parents started the process of getting the repairs made in November, nine months later the work had not been completed, so they contacted us. Another person waited more than four months for repairs. The broken wheelchair was making it difficult for them to get into bed and use the bathroom.
Yet, another consumer reported having waited eight months to have a brand new wheelchair repaired. And a woman contacted us because her neighbor's new wheelchair broke within just one month of delivery. And her neighbor had been forced to wait months for it to be repaired. These are just a snapshot of the stories we have heard from constituents about frequent problems with wheelchairs, the long waits for repairs, and the impact it has on people's lives. A US perks survey reported that 93% of respondents needed service for their wheelchairs in the last 12 months. And over two thirds needed two or more repairs. 62% said the average repair took more four weeks or more to be completed. 40% said it took seven weeks409 or more.
There are numerous serious consequences associated413 with waiting to have a wheelchair repaired. Such as being injured, getting stranded away from home, or isolated at home, and421 missing work school, family events, and medical appointments. People use wheelchairs for more than movement. Wheelchairs also help manage pain and pressure and provide postural support. The common sense reforms laid out in this bill are consistent with the consumer protection principles438 expressed throughout our laws. Among these principles is that products sold in Massachusetts must work properly for a reasonable amount of time I
f new products do not work properly, then the seller has450 a legal obligation to repair or replace them promptly or provide a refund. Expressly setting out more detailed rules and expectations such as clear timelines for repairs and requiring manufacturers to have an inventory of parts will help not only our constituents, but also help wheelchair manufacturers and dealers understand their obligations. I Thank Senator Cronin and represent and vice chair Keith for their leadership, and I urged committee excuse me, representative O'Day for their leadership, and I urged the committee481 to report this bill favorably. Thank you again for the opportunity to provide this testimony. SHOW NON-ESSENTIAL DIALOGUE
Thank you so much, attorney Lynch. Attorney Blendell?
Thank you, Senator. I don't have anything to add, just here for the brand.497 Thank you very much. Thank you very much. Are there any questions from the committee for the panel?
Right? Seeing done, or, excuse me, seeing done, we're going to move on to our next panel. I'd like to invite Harry Weisman from the disability policy consortium. K, Shokare, from the Boston Center for Independent Living, and Barbara Italian from the disability law center to testify.
It owns here. Okay. Gotcha.
HARRY WEISSMAN - HB 378 - SB 152 - Disability Policy Consortium - Good afternoon. Chairs vice Chairs and members of542 the committee, and Thank you for your time. My name is Harry Weisman, and546 I'm the Director of advocacy at the disability policy Consortium, a statewide disability rights advocacy organization. Today, I'll be testifying on behalf of DPC in support of H. 378 and S.152, an act expanding wheelchair warranty protections for consumers with disabilities. As part of my work for DPC, I and my colleagues at BCIL and community members and others have spent the past three to four years in meetings with lots of people.
Who use wheelchairs and providers and577 mass health about this issue, and this is where we've come to today. Wheelchairs and other mobility devices break down easily especially in places like Massachusetts where the winters are harsh. A lot of the buildings are decades old and the roads and sidewalks are uneven. Within just a year or two of receiving a chair, many596 consumers will have already put in a repair order with their wheelchair provider. And600 then they wait weeks. Sometimes months or even years for their chair to be repaired with minimal updates or communication if any from the provider.
Often enough after waiting all this time, a repair tech shows up with the wrong part and the whole process starts from scratch all while the consumers without reliable mobility equipment. Consumers are rarely ever offered a temporary replacement to keep them mobile during622 the lengthy repair process and while a loaner624 chair is not an option for everyone, especially those with complex or medical or specialized needs and customized wheelchairs, many people would take a chair that meets only some of their needs if it means if it means having a way to get to the bathroom.
Or go to an occasional doctor's appointment ideally just for a few weeks. You'll be hearing from a lot of wheelchair users today, and they can tell you what it's like to go without a working chair for so long and what having a functioning reliable chair means for them and their lives. So what I'll say is this. This is a civil rights issue. This is a health equity issue. People with disabilities deserve to live full, healthy independent lives659 and be part of the community. Instead, a handful of companies663 funded by private equity profit off them to sell equipment costing tens667 of thousands of dollars.
And then hang them out to dry when they're asked to stand by their product and ensure their customers can actually use it. Without strong usable warranty protections, people with disabilities have no recourse when they wait for months without a repair and are completely at the mercy of these companies that have no incentive to help them. For what is one of the most crucial life saving liberating products for the people who use them, it's remarkable how lacking the accountability and consumer protection is in this industry. Passing this bill ensures that all wheelchairs purchased in Massachusetts would be covered under warranty for at least two years.
The law would require repair as under warranty be completed in 21 days. It would cover harmful costs incurred by the consumer while waiting for their repairs, including out of pocket medical expenses. It would708 require wheelchair provider keep loaner shares available so consumers can remain independent while waiting for their repair, as well as inventories of common parts so that repairs can happen sooner. It would set717 specific expected time frames for evaluation and providing a loaner chair in cases where the721 consumer's primary chair is inoperable, and it would also authorize the attorney725 general's office to get involved under consumer protection law. SHOW NON-ESSENTIAL DIALOGUE
Thank you, mister Wiseman. Thank you.
Thanks. Sorry. You can speak in the mic. There's a735 lot of people
Yeah. How is that?
KESHU KARE - BOSTON CENTER FOR INDEPENDENT LIVING - HB 378 - SB 152 - Good afternoon, everyone. I want to begin by Thanking the committee chairs and buys chairs for the opportunity to748 speak today. My testimony750 is in full support of house bill 378 and senate bill 152, an act expanding wheelchair warranty protections for consumers with disabilities. My name is Keshu Kare and I work across from here at the Boston Center for Independent Living, where we fight every day for disability rights. The Boston Center for Independent Living's core mission is to promote greater independence for people with disabilities and support full integration into society.
A significant number of our staff and the members, oops, and the members we serve are wheelchair users themselves with the white wide range of needs. It didn't take long following the start of my employment a year and three months ago, before I realized that the current state of the wheelchair repair process is a total and utter disgrace. It directly put my organizations core mission of independence and societal integration into jeopardy. As it often left people with disabilities, stranded or isolated in their homes for weeks or even months awaiting repairs, and in some cases disabling them from moving around their own homes. The current wheelchair, lemon loaves, in particular, are simply inadequate, as they exclude almost every Massachusetts resident who uses a wheelchair.
I'm happy to answer questions later. And lack reasonable and fair protections such as providing a reasonable timeline or any timeline as a matter of fact for a repair in emergency situations. Just imagine, for a second, being a wheelchair user who is stuck with a broken chair for a year and a half, a whole year and a half because of something as simple as crews that hold the front wheels together. I know it's hard to believe, right? But that's my work colleague. Imagine your new wheelchairs motor, stuttering, and being forced to put your safety at risk for five whole months. Simply not to miss on life while awaiting for your wheelchair to be fixed.
That's a consumer at BCIL. These are only two examples out of many. Why should I, an unwilling user who mostly uses my car for leisure, be allowed to benefit from better warranty protections than a wheelchair user who uses their $50000 wheelchair out of necessity. This is a matter of human rights and equality. Period. When a wheelchair supposed to enable people to live full and integrated906 lives, does the opposite we have a problem. The wheelchair industry should simply stand behind their new products and be kept incentivized and accountable. There is no excuse. I urge you to vote this bill out of committee. It has been modeled after several other state laws in the commonwealth. Thank you very much.
BARBARA L'ITALIEN - DISABILITY LAW CENTER - HB 378 - SB 152 - Good afternoon. I'm Barbara L'Italien a former senate chair of this actual committee. Now work at disability law center as their executive director. Thank you to Chair Cronin, Chair Keith, lovely to see representative Donaghue, and lovely to meet you, Representative Worrell and I know we have a couple of other newer members new to the committee as well. So disability law center also views this as a civil rights issue. As has been mentioned by my two colleagues up here. We have studies also that show that Wheelchair users who are affected has important intersectional effects as well. We have data from studies we'll share with you say that individuals from communities981 of color with disabilities..
Lo income folks with disabilities, and Medicaid users with disabilities as well as other individuals required more frequent repairs faced more serious consequences like wheelchair shutdowns and injuries, some may remember a few years ago in the news, a gentleman getting stuck in the middle of a crosswalk and someone having to come along and move him out of that crosswalk so he wouldn't get killed. And so many of these folks1009 face far more serious consequences, and we're far less likely to1013 have a backup wheelchair available under emergency circumstances. So this is an disability rights, civil rights. It's an equity, an quality, and it's also about anti-racism and anti poverty work as well.
What I would just say and I want to acknowledge that this committee reported this out favorably last year. I also want to acknowledge and Thank the senate for voting affirmatively on this bill last year as well. I know there are folks in the industry that will complain and say that this is not workable. However, why would we not want citizens of Massachusetts to have the same protections and enjoy the same rights as other states currently have. So these manufacturers are already dealing with these pro consumer protections in other states. For example, expanding the warranty to cover for two1063 years, Rhode Island and Connecticut do that, providing loaner chairs when a consumer's chair is1069 inoperable 16 state do that.
Reciring providers to stockpile common parts to speed up the process, MassHealth currently has what's called a provider responsibilities provision, which should require that parts are on hand. It's on the books, it's not being followed. And a notice of rights. So if1090 this were to happen, we would want an informational piece attached1094 to each wheelchair at point of sale. This is already done in New York, Delaware, and Arizona. And as far as allowing the attorney general's office, intervene when necessary. Hawaii, Kansas, Maryland, Ohio, Vermont, all do this. So I will go back and say, that these consumer protections are already happening in other states. Our Massachusetts residents deserve no less SHOW NON-ESSENTIAL DIALOGUE
Thank you.
Thank you so much.
Any questions from the committee for the panel?
Hang on. Thank you very much for your testimony today.
Thank you.
I'd like to recognize representative Mckenna, who has joined us remotely.
Thank you, madam, vice chair. I would also like to recognize the distinguished gentleman from Milton senator Timothy who's just joined us. And I'd like to invite Lita Roday up to present the committee testimony. And welcome, is better half to the hearing room this this afternoon.
No offense.
Good afternoon, senator. Thank you very much for taking me out of order. I appreciate that.
REP O'Day - HB 378 - Thank you to the former three folks speakers that just commented here. And I'm sure that you're gonna hear the remaining afternoon of the afternoon. Very similar information from consumers who have to on a daily basis be concerned about whether or not they're going to be able to get out of their home. I was driving in today just thinking about what a nuisance it is when your car breaks down. And I can't imagine how much more of a nuisance it is when you are someone who relies on a wheelchair to be out in your community and move around in your home to possibly get yourself to school. Whatever those needs are, to be a day without that would be, like.
I think, in many instances, like, spending a jail a day in jail. So I really am here today to just absolutely put my weight behind 250 pounds worth. My way behind, you know, having been the lead sponsor of the bill in the house to re recommit myself to making certain that I come today to strongly endorse this bill. I want to Thank you, son of the Cronin, for your work on this bill and for your encouraging words last session and the help that you were. And has a former tenant of the Latino said getting this bill actually moved out of the senate. So very hopeful that we will do that again this session.
And I can't for the life of me. Figure out why it is that the manufacturers are so dead set against doing this right thing here in the commonwealth of Massachusetts where they do it in other states. And again, this is a consumer protection bill. It is a human rights bill. It's a health care bill. I think it covers a multitude of necessities and, again, I just want to say how strongly I support it, and I hope that the committee will see again favorably to move it quickly out of the committee. And Thank you all for1308 hearing it so quickly. I think it really is greatly appreciate it. Thank you. SHOW NON-ESSENTIAL DIALOGUE
Thank you, mister1315 Leader. Any questions from the committee for
The chair would like to recognize representative Miskino has joined us here. Thank you for being here, and you have Cinister Suits, Susan Murphy.
And I1337 want to Thank welcome, senator Sue Moran, who has joined us virtually. At this time, I'd like to call up another panel, Zari MR Hosseini from Mgh, and I I apologize if I pronounced that incorrectly. And Chloe Slocum from spaulding Rehab Hospital, Mass General Brigham.
ZARY AMIRHOSSEINI - CONCERNED CITIZEN - HB 378 - SB 152 - Thank you very much for giving me the opportunity to speak today. My name is Zary Amirhosseini. I’m the disability program manager at MGH. And I'm not only I'm not only representing Myself has a person with a disability that uses both power wheelchair as you see today, but a manual wheelchair at home. But I'm also representing over a thousand patients that I work with throughout the hospital that have physical and mobility issues.
And rely on wheelchairs to get to the doctor's appointment and get their care at the at our hospitals. So I1416 want to share with you a personal story of what happened to me recently as1422 recently as last week. I had an issue with my joystick. So my joystick is like a wheel on the car. If a wheel on your car, is broken or stuck, you can't drive the car. Doesn't matter how good the motor is running, how well the car is designed. Because You just can't hold on to anything. So the joystick, it was as simple as it's too loose, which I had to tighten that work.
And my brother fixed it several times, he eventually became to a point where we couldn't fix it anymore. So I called the company, and the company said, It would take about a month for them to get the supplies and then a month after to get someone to come on install it. So, meanwhile, I was driving it with the joystick being loose, and I was concerned because A lot of times the chair would rear in the middle of the street, and I was putting not only myself in danger, but other pedestrians and the drivers in the street. So I'm here to really offer support for the bills that are being offered today.
And really tell you that Using a wheelchair for some limited disability is more than just comparing it to a car because if you don't have a car, you can hop onto a bus or a tee. But when you don't have your wheelchair, you don't have any way to get to work, to1512 go shopping, to get to your doctor's visit. So this is much more important than just not having a car. And I really want your support in this because I've had patients who have had their wheelchairs broken when they're at the hospital, and I've had to bring my own battery charger till you help them get around. So, anyway, Thank you very much for your time. SHOW NON-ESSENTIAL DIALOGUE
Thank you, Zari.
Chloe.
CHLOE SLOCUM - CONCERNED CITIZEN - HB 378 - SB 152 - Thank you, Cronin and community members for allowing me to testify today. In support of House bill 3781 and senate bill 152, otherwise known as the warranty1553 protections for consumers with Disabilities Act. My name is Chloe Slocum, and I am a spinal cord injury physician. I graduated from Columbia University College of Physicians and Surgeons in 2011, where I was drawn to the field of physical medicine and rehabilitation due to its emphasis on helping people regain function and participate meaningfully in their communities after illness or injury.
I currently serve hundreds of individuals that use wheelchairs for mobility in their homes and in their communities. And I would like to share with you Names have been changed to protect their privacy. I have an eye care for Mike who is in his early forties. He uses a power1603 wheelchair due to spastic quadriplegic cerebral palsy, which limits the use of his arms and his legs. He works full time at a public university in Boston, and his mother helps lift1612 him to transfer him in and out of his power wheelchair. two winters ago during an ice storm.
The seat belt for Mike's power wheelchair broke, and he was informed that it would take several months to repair this. He was instructed to1625 improvise to use a clothing belt to strap him into the power wheelchair to protect him as he navigated the ramp from his home. Out for when he would go to work and also protect his mother who was trying to spot him as he navigated the IC band. This all happened, despite him living proximal to the wheelchair vendor's office. Next, I'll talk about Jean. Gina's in his early sixties. And I'll also talk about Beverly who's in her late thirties.
They both use manual wheelchairs for mobility due to spinal cord injuries causing paraplegia, to limit the use of their legs. Jean is very active. He visits the gym multiple times a week when his wheelchair is working. He previously worked in information technology, and he loves to cook for his family. He's looking for an accessible apartment and looking to return to work. But his job search and his apartment search are both limited by the fact that he cannot get replacement wheels for his wheelchair in a timely fashion. Limiting his ability to do such mundane things as set up an appointment to get an appointment or return a call, set up a job interview.
Beverly works for a non profit as a competitive athlete. And she could perform these repairs probably herself and has researched ways to buy parts online. However, she continues to wait for long periods of time without repairing her wheelchair for the vendor to repair it due to concerns that this will void the warranty protections on her chair. And lead her to not have any sort of consumer protections for this piece of equipment. I am not aware of any parallels that would affect other mobility devices either for able-bodied consumers. Thank you, and please consider supporting this bill. SHOW NON-ESSENTIAL DIALOGUE
Questions from
REP DONAGHUE - First, I want to Thank you both for your work. I know how important it is. And you've mentioned your work with people. Is there a serious, I know you don't have statistics on this, but you lose work hours how often would you1751 say, how would you assess that situation? The impact on people's ability to work and help other people. But it has an impact on other patients who could have used those appointments.
SLOCUM - Absolutely. We see that frequently. We do know I'll share with you and I provided in my testimony. There is national analysis on these. Done with the spinal cord drain valve systems in terms of how peep how often people miss work, but it's estimated they can miss up to two weeks of work at a time for these issues. And if they don't have remote or flexible work arrangements, that can really be quite impactful. And as you said, there is an issue with workflow and throughput for the hospitals in terms of seeing patients and and delays in care that one patient not being able to make their appointment has on multiple other patients.
DONAGHUE - Thank you. Thank you for your work. SHOW NON-ESSENTIAL DIALOGUE
I've seen no other questions.1843 one thing.
Joining us virtually, I'd like to invite Tamara Huntley from the Massachusetts Developmental Disabilities Council to provide the committee testimony
Tamara, I believe you're you may be muted.
TAMARA HUNTLEY - MASSACHUSETTS DEVELOPMENTAL DISABILITY COUNCIL - HB 378 - SB 152 - Thank you for this opportunity. She testified and sent a bill152 in the house bill, 378, an act1881 expanding wheelchair warranty. Protections for consumers with disabilities. This is a policy priority of the Massachusetts's developmental disability council. That I worked for, the council is an independent agency that works to educate state policymakers, and we get 10. Of legislation and it's a pact on people with developmental disabilities and their families. I'm proud to stand here today and provide testimony on the council's behalf. My name is Tamara Huntley. I live in Montlow. I was born with cerebral palsy.
I'm a media wheelchair user and rely1926 on it. To get around. I find the wheel tear parts to be very cheap, plastic, and flimsy, they break easily and you take up six months for repairs. For example, some of my challenges I'm having are the breaks are the breaks of my wheel. The wheels of my wheelchair do not work, and they don't lock properly. It tied a forced problem solved by backing my wheelchair up against the wall, and relying on other people to hold it. So it doesn't roll away. This is not saying it limits my independence It's also unacceptable. So therefore, I've fallen several times and gotten hurt. And a fearful for using my wheelchair.1979 I have to go without1981 my seat cushion because it's cheaply made and it constantly rips.
And not having the cushion makes me sit lower in the wheelchair, so I can't get out of my wheelchair safely without help. It's uncomfortable and incredibly painful, it can lead to pressure source. I also use a crutch holder that frequently bend. I can't attach my crutches to my wheelchair, and it's instrumental for me to be able to get into my wheelchair. Another time the fuck pedal broke, and I had to rely on someone in the community to give me the book pedal, and I was unable to fix it by myself, so I had to go without. Each time I contacted my supplier about my wheelchair breaking, they were slow to respond, the warranty expired after 90 days, It takes months for repairs and to replace the proper equipment. I put it this time. SHOW NON-ESSENTIAL DIALOGUE
At some place? Yes.
I'm sorry. Do we're at time right now, and I'd like to ask the panel if they have any questions for you.
Thank you.
Thank you.
Any questions for something. Miss Sunley, I I just want to say Thank you for joining this committee today and providing your testimony. It's it's heart wrenching to hear some of your stories, and it it it
helps us better understand the opportunity in front of us. So Thank
you. Thank you.
Thank you. At this time, I'd like to welcome Pamela Daily from the United's final2093 association, and ask her to2097 provide testimony.
Thank you for meeting.
And I would just ask everybody who's testifying in person if they could speak up and project. So everybody in the the committee in the hearing room here can hear your your testimony. Thank you.
PAMELA DALY - CONCERNED CITIZEN - HB 378 - SB 152 - Hello. My name is Pam Kayley. I live in Charleston, and I'm speaking in support of wheel share warranty bill H. 378, S. 152 Several years ago, while I was visiting the high line in New York, I stopped to take a picture and suddenly my wheelchair started to tip over. Luckily, a man was able to catch me and my chair and set it upright before I hit the ground. Then he held up my left front caster2151 to show me that it had fallen right off of the wheelchair. A caster is a fork attached to a small front wheel, and weighs about four pounds. At the top of the fork, there is a little piece of metal that is about an eighth of an inch long.
That is inserted into the chair and attaches it to the frame. If that piece becomes loose and the wheel is not touching the ground, the fork and wheel will detach from the chairs suddenly. Apparently, I was stuck in a slightly uneven part of the boardwalk so2184 the wheel was not making contact with the ground. The man helping was able to temporarily reattach the caster but it would fall off again if I had to roll over any kind of uneven surface. Sure enough. While I was attempting to get to my car a few blocks away, the caster came off again, I fell over it went to the pavement and broke my hip.
As a result of the fall, I missed 10 weeks of work. I missed so much work not because of my broken hip but because it took that long for the wheelchair to be fixed. I was home bound until a new castor arrived. This left my coworkers stranded. None of them could understand how it could be, that ordering a simple little part could possibly result. In 10 weeks of lost work. Now the time line for getting my wheelchair fixed had become their problem as well as mine. I don't think that any abled body person today would stand with this kind of bungling and red tape.
That followed or the time and money wasted in waiting for a simple mechanical part to be ordered and delivered. It took three days to get through tomy vendor to put the order in for the part. It took a couple of weeks for the vendor to come out and look at my chair and agree that I did have a broken part. They do that. Crazy. A week for my doctor's note to arrive stating that I needed the part. More time for insurance to approve the order, and even more time for the part to arrive at the vendor and for the vendor to come to me. Then and I bet there is one person here who this has not happened to. When the part arrived amongst us, When the part arrived, it was the wrong part, and this happened twice. So we start all over again. SHOW NON-ESSENTIAL DIALOGUE
Thank you, miss DAaway.
Thank you.
None of us share? Yeah.
REP KEEFE - So Thank you so much, Pam. Am and I have known each other for close to 40 years. We worked together. I was one of those workers she left stranded. No. But Pam has been the leader here in Massachusetts for people that our wheelchair community wheelchair bound. And I just wanted to say Thank you so much to everyone here, but especially because we've known each other. I did have a couple of questions. I've been saving for you. We've talked about a lot of different wheelchairs Manual wheelchairs and electric wheelchairs. Can you give us a sense of what those costs?
DALY - Sure. I have a manual wheelchair. It's a pretty simple chair. It's five years old. And it was between five and 6000. That's a going rate. I mean, that's not expensive. Power chair, some of them are 40,000 yeah. SHOW NON-ESSENTIAL DIALOGUE
But it's
taking them out 30 to 40000.
You
know
KEEFE - I heard 50000 before.
DALY - Yeah.
KEEFE - I wondered, really, 75. Okay. So, I wondered too about the vendor. Is the vendor in Massachusetts? But they're not the manufacturer right there, the middle. So do you see the issue it's shared, right? Like Right?
DALY - It's really complicated, Mary.
KEEFE - Okay. Well, it's unfair. No matter what the problem.
DALY - It's very complicated. Everyone's passing the buck. Part of it is that we this is considered a medical piece of furniture. So I can't just go and buy one on my own. I cannot even pay for a chair with cash if I wanted to. Because I have insurance, they have to go through insurance. So I need a2451 new wheelchair now, and I want a chair that's made in Canada, but I can't buy it. They won't let me. If I gave them a check, they wouldn't let me. If I gave them cash, they wouldn't let me buy it. It's very complex. Oh, we2465 need big help. Thank you.
KEEFE - Well, Thanks for being here today. Thank you. Thank you, Cheah. SHOW NON-ESSENTIAL DIALOGUE
2471 Thank2471 you, miss Daily. I'd like to invite Christine Smith to come before the committee.
Hi.
Wow. Hi, miss Smith. How are you?
Okay. Little nervous.
CHRISTINE SMITH - CONCERNED CITIZEN - HB 378 - SB 152 - I've been in this chair for at least maybe five years. And my brakes never worked. They're not working now. They come out national seating to repair where they're back within two days later. To fix my break. I fell out of the chair. I had to enter the hospital because I injured my back, and have slipped discs. And I was there for a couple of days. And the insurance2555 refused to give me a new chair that this is the manual. And I asked them to2564 see if I get them motorized, but they made up excuses? Not to give me one. And one was because I had I had two algorithms and a stroke, the heart ended in the chair.
And they said, because I suffered some seizures, I couldn't do2585 a motorized. But they never asked for a doctor note. And then they moved on to I couldn't they couldn't give me a motorized. Because I struck her with alcohol. And I may withdraw the motorized tear off into the community. And hit people and run them over, so they wouldn't give me a motorized. So I'm still in this chair. No breaks. And I need someone I'm not too sure the different laws are the names that need to be passed, but some that need to be passed to help the disabled people. Not just me, but the people who can't speak for themselves. I don't have anyone.
And when you call, the companies to come out, you'll say they're waiting for the bar. And the part is in another state far away. And it shouldn't take months. Like, oh, almost a year. The gay part's like, I miss so many appointments. In like, at one time I missed so many apartments, they were going to stop me from coming to spaulding. Because they said, somebody else, make those appointments who could get there. Because I was making that. And I just wonder and then if you ask for a loner, How can you be aware to your company? And you don't have an extra tier. SHOW NON-ESSENTIAL DIALOGUE
Thank you, miss Smith. And I appreciate you coming in and Karen sharing your your story and testimony today.
I'm sorry. It looks so long, but
Thank you. Not at all. Not at all. Does anybody on the panel have a question for me, Scott?
Thank you very much, ma'am. Thank you.
Thank you. I'd like to invite Dan Harris to provide testimony.
Yes. Hello. I'm actually I'm virtual. Can can everybody hear me?
Yes. We can.
Alright. Great.
DAN HARRIS - CONCERNED CITIZEN - HB 378 - SB 152 - I'm actually virtual because my Will your battery is not not faring too well. So, dear members of the committee. My name is Dan Harris. I'm a resident of Quincy. And have been a power chair user for over 10 years. My power chair provides me independence to spend time with family and friends as well as hold down a full time job of which2746 I am very proud. I am here today in support of senate 152 and house 378. The wheelchair repair process as it stands right now is nothing short of abysmal. Many of us are forced to wait months for the simplest repair. An example of this is I made a request for repair on December thirtieth 2022.
And still have not received the parts and the repair is still not done as of today, 05/11/2023. I just want to give you an idea2780 of the repairs that I'm waiting2782 for, our arm pad and a screw. As recently as Monday of this week, I have begun to have problems with my wheelchair battery so much so that I cannot make it through the day on a full charge. The expected completion date of this repair is June twentieth. Now as it's as stated in my previous example, these timelines are both unacceptable and quite honestly seem pretty arbitrary. We are told to ask for a loaner chair and every time that I personally ask for a loaner chair, I have been told that there aren't any available at this time.
Every single time. And as part of my work at the Boston Center for Independent Living, I've been working with a consumer to get repairs done to her chair. I have notes with2832 the consumer going back to July of 20 22. Multiple times, the consumer would call me in tears2838 because she needed a chair that would fit her complex medical needs. Time after time again, we asked the company for a loaner chair so that she may be able to maintain some level of independence. Unfortunately, I have to report to you today that on May second, the consumer passed away undoubtedly in part due to the stress caused by wheelchair repair
I'd like for you to think for a second of your own lives and think if your car broke down and needed a small part, you could easily bring it to the repair shop or go to an auto parts store and presumably be on your way the very next day or the same day. Our wheelchairs are our modes of transportation. If the automotive industry In2882 fact, may consumers wait months for even basic repairs, they2886 would implode. And there would be massive steps to massive steps taken to make sure this never happened again. The way the wheelchair repair companies hold us hostage is discrimination and unacceptable. Thank you very much. SHOW NON-ESSENTIAL DIALOGUE
Thank you, mister Harris. Any questions from the committee?
Seeing none, I'd like to invite Megan Mamati,2911 but I believe he's here in person to testify.
Thank you, mister Harris.
Thank you. I appreciate it.
MEGAN MAMATI - CONCERNED CITIZEN - HB 378 - SB 152 - Hi. My name is Megan Mamati. And Thank you for hearing my testimony. I would like to talk for a minute. Not only about my active lifestyle. I hold a job, and I have a pretty active social life. But I also rent my own apartment, and I live alone. With two companion animals. And as much as the wheelchair repair situations that I go through2967 continuously, the same one over and over again. As much as that affects my outside life. It also it affects my indoor life. I have assistance part of the time and I value very much my time at home with my companion animals by myself.
Well waiting for wheelchair repairs. I can't move from room to room by myself. You know, going to the bathroom and moving around my kitchen to prepare meals. And, again, caring for my companion animals. And I and I guess that's the just pretty simple. Just My will choose more than an automobile, it's my legs. And I've heard a lot of people speak about My wheelchair is my automobile? It's not, it's my legs. Very simple task. I can't do while waiting for wheelchair repairs. And the part of the process we're talking about Today is only part of the process. And this3064 the other parts get dragged also. And we just We need to come together on part of it, at least. It's only a start. Thank you. SHOW NON-ESSENTIAL DIALOGUE
Thank you, mister Mody. Questions from the the committee.
Like to welcome representative Dan Santa. Thank you.
At this time, I'd like to invite Cindy Percell
To testify.
Hi.
I love your outfit. Thank you
very much.
You are dressed for spring.
I'm excited if I'm black and white or pink, but I'll ping it springtime.
So I agree.
I'm pink today. So Thank you. I want3114 to try to talk loud and not talk fast. I'm a fast talk.
Thank you.
CINDY PURCELL - CONCERNED CITIZEN - HB 378 - SB 152 - So and it's good afternoon. My name is Cindy Purcelll. I live in Rutland. I'm here to give my testimony in support of House Bill 378. In Senate 152. And discuss why these bills are so important to myself and others with disabilities who depend on wheelchairs or scooters, to their productive lives. The age 18, I was in a car accident in which I seen AC56 spinal cord injury, rendering me a project. Having a labor wheelchair is imperative for me and others like me to be able to live full life. A full life that, for me, included working full time at the center for living working for three years, and for the Massachusetts rehabilitation commission for 35 years. A life that includes marriage and motherhood.
A life that includes community involvement in Surgery multiple boards and task force. A life that includes vacation and traveling, shopping, and commerce. None of which we possible that a reliable wheelchair. I recently retired from 38 years of full time employment,3186 during most of that time,3188 fortunately, I was able to get my wheelchair peers done in a timely manner, which allowed me to live my life, like, just like everybody else. Unfortunately, that's not the reality anymore. Richard repairs can take weeks to months, because vendors no longer have parts or products in stock. An example of this, about a year ago, my left rear tire, I fell to wheel bearings, resulting in my wheelchair skipping and make a horrible squeaky noise. It was so embarrassing.
Therefore, during that time, I do not go out very much due to the fear of my wheelchair failing, an embarrassment this week. To have this appear, it took over two months, and I'm still waiting for a till option to be repaired to allow me to decline and change my position. With the part that you push comb with expert, any kind of skin problems or text that. Throughout the repair, I took over two months or I don't know. Now I've been waiting for over six months for that decline of things to happen. No one should have to wait weeks or months for these new peers. Working real cheers and screws are necessary for us to live our lives. People disabilities3264 are not We're not less than. We're not. You know? We matter. We contribute to our communities and society in many important ways.
The person falls and breaks their leg, they go to hospital, they immediately get furnished with crutches, cast, walker, to make them mobile possible for them. Why a wheelchair user scooter is made to wait weeks or months? Have a new wheelchair of power in stock is in harder for us to continue into their lives. It benefits our society to have people with disabilities working paying taxes, and contributing to the economy is completely unacceptable, not to have these parts and products readily available to people who need them. Thank you for listening. My testimony in support and these house bills in Senate and please vote. These bills favorably out of committee. SHOW NON-ESSENTIAL DIALOGUE
Thank you, mister Fowler. And Thank you for coming from Worcester County today. We appreciate it. Thank you. Any questions from the committee?
I'm not shy.
Thank you very much.
You're welcome. Thanks, Ian.
I'd like to invite Amy Corker and Hunt to testify next.
I will try to speak up and Thank you very much. I have notes you do not want me without notes.
AMY CORCORAN HUNT - CONCERNED CITIZEN - HB 378 - SB 152 - My name is Amy Corcoran Hunt. My spouse is a legislative aide in this building. And I also have a 10-year-old kid, and I also have progressive multiple sclerosis. Which I have nothing nice to say about. I'm here today, because I waited five months or national seeding to bring my broken wheelchair back to me fixed, five months. It was not a complicated repair. And there was no red tape, prior authorization, any of that. They had they had my credit card. And they and they could use it. I waited five months because of the business choices that the company has made in Nashville and Franklin, Tennessee. And should you pass this bill, they will go back home and they will make very different business decisions.
They really, really will. And I'm going to tell you exactly how I know that. National seating has been owned and controlled by private equity for decades. Same with the other wheelchair company Newmotion. And private equity expects a whole lot more money.3442 Then you get from your stocks, your investments I have in my crummy 401(K), they want enormous returns, That's their that's their profession. And there's nothing wrong with that. I know these things because I worked with private equity companies in my career. Some of them built companies up and some of them feed on the carcasses of the companies. I've seen them do both. Recently, this company laid off dozens3482 and dozens more people in Tennessee.
And their jobs are now in India, which is how you get a 70% labor cost reduction. So that just happened. It's pretty standard business practice for this company to3500 chase the money they must chase. And leave paraplegics like, for example, me, waiting for five months, wondering how we're going to get to work, and, you know, I get a job. And I'm not going to take you through the car thing because you know that. But Make your bathroom at home. You got one. Imagine that you're outside the door of the bathroom. You're not in it. The door is locked. It's busted. You can't get in. And the locksmith will be there in about five months. How you doing? Locksmith will be there in3535 about five months. SHOW NON-ESSENTIAL DIALOGUE
Thank you, miss Kirkburn, Hans.
Alright.
I'd appreciate it.
Any time.
Any questions from the committee?
Right seeing that. Thank you very much.
Thank you kindly.
This time, I'd like to invite Harold S Roads to testify.
HAROLD ROADS - CONCERNED CITIZEN - HB 378 - SB 152 – Senator, Representative, my name is members. My name is Harold Roads. I live in Milford, and Senator Ross, representative Fatman, send their regards and note there, positive support as cosponsors for these two bills. Members, I'm not talking about my wife's catastrophic injury, which left her T12 plate paraplegic. What I am going to talk about is the work I've done as a volunteer after that. Over the last 15 years, I've served as a member of the board of trustees of what is now the United Spinal organization, as the Chairman of the Milford Commission on disability for many years.
And also having the distinct honor of being a member of the Massachusetts3621 architectural access board3623 for a number of years. All through these years, about 15, I have been a trained peer mentor for individuals who have newly injured spinal cord injuries. While they're while they take, while I get many questions, the most the question I get within a year3648 always is What do I do about my wheelchair? I've3656 probably over the last 30 years gotten3658 over 30 Perhaps as 40 as many as 40 calls. As many as 40 calls, to deal with this. Let me just say, it's heartbreaking. I've called I know the people at National seating.
I know the people at New Motion. I know the people at Medline ended in the care, and I have called them myself. At the architectural access3684 board. We’re able to do many3686 good things and relieve many sufferings of accessibility for persons with disabilities. This 1, this small issue, which is what it is, of providing warranty for a wheelchair is perhaps the most stag situation for persons who are in wheelchairs. And I just certainly urge this committee the House, the Senate, the governor, to finally pass this legislation. So folks can have much better lives. Thank you very much, senator, representative. SHOW NON-ESSENTIAL DIALOGUE
Thank you, Harold. Questions from the committee.
Seeing, none. Thank you very much.
Thank you very much.
I'd like to invite Franklin Pineda Lopez to testify.
FRANKLIN PINEDA-LOPEZ - CONCERNED CITIZEN - HB 378 - SB 152 - Thank you community chairs and vice chairs for the opportunity to speak to the in support of the wheelchair warranty bill. H.37S and S152. My name is Franklin Pineda-Lopez, a resident of Brooklyn, Massachusetts and a wheelchair user for over 30 years. Waiting for repairs on my wheelchairs has been very challenging in many ways. I believe good service starts with care good communication and timely service, but this is the opposite of what I3792 have experienced. As a wheelchair user, I have been treated to feel like a lesser human. Let me explain why. My less editorial powered chairs than I'm currently using is missing an armrest as you might be able to see.
I have been waiting for an armrest for a year and a half and still counting. Every time a tech comes in, he brings in the incorrect part.3817 Once I was ordered an armrest for the wrong side even though I had clearly told my provider,3823 joysticks on the very and the missing armrests on the left. Then I was brought in armrest for an manual wheelchair even though the technician has seen with his own eyes that I was sitting on a power chair. Despite being promised a rushed delivery I'm still waiting after a year and a half. Living with one armrest instead of two affects my balance and posture, which can lead to a worse health condition.
My wheelchair's price was approximately $30,000 There is no reason why I should have but I should not have better repair service when so much profit was made out of this chair. There is zero accountability and people with disabilities are dealing with the consequences. The example I gave you is 1, I love many. I can only imagine much worse scenarios forcing people to be stuck at home, not be able to move inside or outside their homes. My wheelchair are my legs. This bill is very important to ensure people with disabilities are treated humanely and with dignity. Thank you, Chairs Cronin and Vice Cheers, Keefe and Moran. Please vote this bill terribly out of committee. Thank you. SHOW NON-ESSENTIAL DIALOGUE
Thank you.
Any questions from the committee. Seeing, none. Thank you very much. Thank you. Like to invite Arthur Tori to testify.
Welcome, mister Tory.
Thank you.
ARTHUR TORREY - CONCERNED CITIZEN - HB 378 - SB 152 - Good afternoon, ladies and gentlemen. I'd like to Thank you for providing me this opportunity to testify on these two bills. My name is Arthur Torrey, and while I'm speaking as an individual, I am the vice chair of the Billerica account on disability. I'm also a member3940 of the United Spinal Association Boston chapter and I'm a maker and volunteer at the artisans asylum in Austin, which gives me a lot of advantage for this. I can fix my own equipment when I need to. I will not let The wheelchair companies touch my power chair. I depend on it. When I brake, I fix it, that day or the next day.
I put in, this bill, I might let me support it, but it doesn't do much for me. Because it extends warranty for two years. My power my manual chair that I have at home in my Mount shower chair are both over two years. Doesn't do much for me. And insurance regulations required chairs are expecting to last at least 5, so just probably more people that are not going to be helped by this building would be helped by it. However, it is a good start, so I support it with moderate3993 pet provision. I would like to see the right to repair like they have in Colorado. Because that really would be a much bigger help, be able to have the right to catch your parts wherever.
And have been prepared by whoever can do it. When your car breaks down, if your shop the shop can't fix it you can go across the street to the guidance we next door.4017 You've got our choices. I don't. My own story, In April of 2022, I put in a request for repairs on my manual chair, my shower chair, because if I have to pay if it breaks myself, I'm going to pay out of pocket. If I call my ass health or the new motion, who actually should be called no motion. With their companion company, National's heating, and immobility, they take an Mass health pays for and the whole thing. The parts are simple. I had some bald tires. My seat cushions were worn out.
The armrest of my shower chair had turned into sponges and were dripping water every time I do a transfer. I had none of the repairs complex. I could have done the whole thing maybe two, three hours. After repeated calls, and I've attached my call letter in my written testimony to come to submit it. I got callback got promised callbacks, which never came. And a tech time shows up and insists on, oh, I gotta replace the rear wheels on your manual chair. Tires have passed about $50 Mass Health is going to have to pay over $1000 for new wheels. I think when I get them eventually. After not having any more4101 updates and multiple updates,4103 calls that were promised return calls, never showed up. And so on. I'm4110 still waiting for parts. SHOW NON-ESSENTIAL DIALOGUE
Thank you, mister Tory. Questions from the committee.4116 Representative, Donahue.
DONAGHUE - Yes. So you say, general insurance companies will say, we will replace your wheelchair every five years. That's a national standard and.
TORREY - No Medicare rules basically expect that unless your condition has changed the point where they can't make the chair work for you that you would not get anything for five years. And then it becomes a question of whether the cost of repairs is more than a certain percentage of the cost of replacing the whole chair. So there's basically a stand on that. I think a lot of the problem really in some ways boils down to that We're sitting in these chairs aren't customers.
Customer is the insurance company. The insurance company frankly doesn't care about us. They want the cheapest piece of crap that they can palm off on us and make us go away. And same thing for service, They're not supposed to bother them at all when we're stuck at home or in bed. Though, why should they worry about it? And, the wheelchair repair companies are the customers of the insurance company So they provide the customer the service that the insurance company wants. SHOW NON-ESSENTIAL DIALOGUE
Thank you, misterrey.
4197 Like4197 to invite James White to testify before the committee. James?
James with us virtually.
Okay. Thank you very much. I'd like to invite Ellen Lee to testify.
Ellen. Ellen Lee. I own.
Get close to nothing.
It would be hurt. Can I move this forward? Please.
Okay.
Alright.
ELLEN LEE - CONCERNED CITIZEN - HB 378 - SB 152 - Well, Thank you so much for meeting today to hear about the4255 urgent need for expanding wheelchair warranty protections. I'm here in support of H. 378, S.152 I’m Ellen Lee I live in rlington, and I'm a power wheelchair user. I can attest to the many problems in the current system and the need for urgent changes. As I look back on the difficulties that I've had with repairs over 10 years, so this is not a recent supply chain issue. Which stood out most. Was it there were problems every single time, no exceptions. When I needed help from replacing tires to motors, repairs have always taken months.
4294 Issues4294 have included phone calls not returned, long delays for4298 a tech to see what needed to be repaired, then the order itself would be another delay followed by a long wait to have the tech actually do the repair multiple times just when it seemed like things would finally get fixed. The part delivered wasn't correct. This wastes time and resources and most importantly leaves someone like me with a faulty or inoperable, and potentially dangerous wheelchair during this unnecessarily drawn out process. For example, a bolt fell out of my headrest, something simple but it took three months to repair. In4334 the meantime, I couldn't use this4336 cushion.
And this lack of support caused me severe pain and increased fatigue. When the switch box on my power wheelchair broke off, it was dangling. And also took4347 about three months to replace. This4349 controls the functions on my chair and while4351 I was waiting I had to stress and worry4353 that my chair would suddenly stop working, and what would I do or what would I not be able to do while I was waiting for it to get fixed? As you've listened to the stories of all the ways that wheelchair users are not protected, please consider how advancing this fell which can be done in the state level of these changes by providing reasonable timelines for evaluation?
And, sir, to speed up the process, authorizing, when necessary, and expanding the warranty to cover real shares for two years. This bill is about accountability, and it draws upon legislation already available in other states. This will help level the playing field for us to have the rights and protections afforded other consumers. It's about our civil rights We need this legislation for our health, our independence, for everything that we do in our lives. So please help provide This much needed health related consumer protection by advancing this legislation forward, and I Thank you for your support. SHOW NON-ESSENTIAL DIALOGUE
Thank you all. Any questions from the committee? Thank you very much for your
time, Tony. I've also submitted a great
Thank you. At this time, I'd like to invite representative Susa who I believe has joined us. To testify.
REP SOUZA - Thank you so much, representative and senators. I wanted to share a bit of my story and public service, and I know it's it's oh, yes. Thank you. I began my career as an elected official in the Framingham School Committee. I was immediately named chair of the DEAI subcommittee because I was the only brown person, the only immigrant, the only one that spoke different languages, and the only outsider, really. My right hand on the subcommittee was a white Republican woman, who was a product of generations of, quote unquote, tiny tonnies, and I mean that affectionately by the name of Karen Demsey. To say Karen and I were different would be an understatement, but we shared a commitment to equity in civil rights.
You see, Karen4505 relied on a wheelchair to get around because of4509 an accident resulting from her middle school principal, finding her limited mobility,4513 not enough to fire up the elevator, too much but in convenience, and she had a terrible accident on the stairs. So she was now stuck in a wheelchair for the rest of her life. Karen went on to be the founder of the Framingham Disability and was a fierce advocate for education an educator for disability issues. Karen unfortunately was taken from us much too soon on Christmas Eve 2020. And today, I'm picking up the baton in the hopes to play a small role in continuing her advocacy. Karen would say today that it is unbelievable that our children and families live in fear of losing basic rights for months at a time.
As at the sign of any4557 equipment malfunction. She'd roll her eyes and clench her fists when I would tell her this week4563 that my car broke down on Monday and I had it back on Tuesday. She would also reiterate what was said here earlier in her own words and said, can't compare the warranties. All you want, kid. You can still get around without your car. And she would be right. So I'm Thankful for the progress the previous sessions have made. On these sessions, but I hope and I I humbly ask, and I offer any support needed to take this all the way. For Karen, for the children in my district for the families in the Commonwealth who are unfortunately live in fear of equipment malfunction taking away their basic abilities to survive. Thank you. SHOW NON-ESSENTIAL DIALOGUE
Thank you, Representative.
Any questions from the committee?
K. I think I've got this right. So now I'd like to invite Katarina Torres Radeasek to testify on behalf of James White. Or she's not with us?
Okay. Understood. Thank you very much. Like to invite William Fahey to testify.
Thank you for having us.
Thanks for your patience.
No problem.
All right.
WILLIAM FAHEY - CONCERNED CITIZEN - So Half of my jobs, I have four jobs. I work, you know, at Gillette Stadium and Fenway Park,4663 you know, very accessible wheelchair. You know, I've had experienced and I also work for TV. 12. And you know I got these letters of recommendations to change the train station into wheelchair access. And according to what I can understand is it's hard for4692 me. I've had anxiety and I had isolation with not even getting to work because of how my wheelchair and all the repairs that I need to go through going through so many different ways of, you know, understanding you know, a way that, you know, it's basically my everyday life.
And I've been in a wheelchair, I've been wheelchair user for basically my whole life and having CPs. I mean having cerebral palsy does not you know, it's not easy to have a disability. But, you know, I kind of have a way of understanding a way to having a voice, I work for mass advocates. They're an advocacy group. That I work for, and I also have the right to, you know, work in the community. And I feel like having them isolation, you know, whether if you have a disability or not, everybody has role to4764 work. And it's a way to have a way to be able to be4773 empowered by people with4775 disabilities, and here's my mom that would like to testify as well. And would like to chip in.
LIZ FAHEY - CONCERNED CITIZEN - Thank you, and Thank you all for hearing us today. It was important to get here and just rolling in and finding a spot. I was having PTSD thinking about one of his tires going out and all the other testimony. We've had all those things happen. And4796 being stranded and what to do. And I fear for what happens when I'm gone because I deal with managing these calls and the long waits that sometimes are six or seven months last winter. The minor piece, this backrest was flinging back, and his4811 hand brakes were both broken and getting him in and out of Boston.
And to work, we it was a he had to miss several days of work, and then we found a loner chair that wasn't the right fit. Long story short, I ended up calling National Seating and Mobility. I was frustrated getting the run around. We don't have staff to come. We're not going to be able to get there. And, you know, they directly told me they didn't have enough staff. And then after, I think, the fourth month I called, and they said the parts were on back order because of supply chain issues. And I got so frustrated that I called the company, the manufacturer, key mobility, and spoke to them.
And they said, can you tell me do you have? And I got the part numbers these two specific parts, and they said, yeah, we have them in stock. So I called the CEO's office of National Seating myself, and I basically, so I'm going to call the Boston Globe where you're going to get me these parts tomorrow. I was so angry. And they did, but not everybody has and he won't necessarily be able to do that on his own. And, you know, just hearing a lot of the testimony this is a money issue. This is about money pure and simple when we need a new wheelchair.
It's amazing how quickly we get the referral and we go to spalding rehab and the rep from National seating is there and everyone's very pleasant. And pretty quickly, the process moves through to purchase a big $5,000 ticket item. But getting the repairs is a whole another story and, you know, I just feel for everyone in this room hearing the other testimonies. It got me more fired up, and I would really be grateful to see this legislation passed. It would be an a great start. Thank you. SHOW NON-ESSENTIAL DIALOGUE
Thank you, miss Faehy. Questions from the committee. Gwen, Thank you both for coming in today and for your testimony. You're welcome.
Thank you to invite Robbie at j.
I could talk pretty long.
I haven't been at the house, please. four months. Let me move this fast with my time though.
ROBBIE RJ - CONCERNED CITIZEN - HB 378 - SB 152 - Good afternoon on the moment of this committee. And Robby RJ. I'm here today in support of this wheelchair warrantee, Bill H. 378, S.152 I suffer from degenerative arthritis in my bones and joints. I use them over soon to help me move a bad outside. I get no pleasure in not being able to walk on my own. Actually, it's very depressing, being confined to a4977 mobile device. It's even more the person unable to use it because it's not working properly. And it takes months, sometimes a year to be repaired as you have witnessed from other testimonies today. When I became aware of this bill. My only question was, why?
Why is they coming up in greater institutes A laid a lead up for equality rights? This central right of people with disabilities is not protected. This question became like5015 a bell ringing in my mind. The question why, why, threatened me to recall my college causes and other than in government, especially one paragraph in our state's constitution, preamble. This quote was taken from my constitution preamble. And I quote, “The end of the institution maintenance and administration of government is to secure by an existence of the of the body politic. To compose it with the power of enduring and safety and tranquility, the natural rights and the blessings of life. And whenever these great objects are not obtained.
The people have a right to alter the government and to take measures necessary for the safety, prosperity, and happiness.” Honorable committee members. Again, I have to ask why. Why should there be any hesitation inside this committee in any of our legislative branches, the pastor's wheelchair want to build. An act that would have spent mobility devices on wheelchair for compliments or disabilities such as myself. I entered this member committee to support this bill. Because in doing so, this committee will be ensuring the rights, protections, safety and transquantity of citizens with disabilities as stated in the preamble about a great coming up at the door. Thank you for your time and consideration regarding it that. Please enjoy the rest of your day. SHOW NON-ESSENTIAL DIALOGUE
Thank you very much.
And I've gotta be on the wheelchair a couple more. I'm 67 years old. I even walked these halls. Oh, lady.
Thank you. Thank you. Any questions?
Oh, fine.
I won't make you5140
Thank you so much.5144
I'd like to invite Marsha Bewembo. From the Boston Center for Independent Living to testify.
I believe he's joining us virtually. Mercer, are you are you with us?
Right. If not,
there's somebody come on. Yes, Marshit.
Marshheed, if you were with us, the floor is yours.
And if not, we will return to
Hopefully. If Michael Moihi from the Boston Center for Independent Living is with us and ready to testify,
And I apologize if I am mispronouncing the last name. Michael, are you with us virtually?
Onmuring, capture.
Hi. Can you hear me now? We can hear you.
MICHAEL MUEHE - CONCERNED CITIZEN - Okay. Thanks. My name is Michael Muehe, and I live in Jamaica. I'm disabled due to a spinal cord injury, and I've been using a wheelchair. Full time since 1977. I want to Thank you for the opportunity to5239 testify today. I'm here to urge your approval of house bill 378 and Senate bill 152 for much needed wheelchair, warranty protection for consumers with disabilities. Over the past four and a half decades, I've seen a lot of changes in the wheelchair business. I used to be able to get repairs performed on my wheelchair quickly and efficiently by my local repair vendor based in Brighton. But as is the case of many industries and much to the detriment to people with disabilities, corporate consolidation happens
The larger wheelchair repair companies begin to swallow up the smaller ones, to the point where we have increasingly fewer options for repairs of our vital mobility equipment. I witnessed firsthand that the larger these companies got, the more than neglected or even abandoned basic customer service. I'll share just one recent example of this. Last August, I drove from my apartment to make a plane up to Wilmington to visit a Wheelchair repair company that had recently moved their headquarters to Woburn. The technician there tried his best to be helpful identified several parts that we need to be replaced in order to ensure my power chair would continue to function safely.
He said that or that he would be ordering the parts, and they would get back in touch with me to schedule a repair date. After a few weeks, not having heard anything, by contacting the company to check-in the status of my parts. My phone call eventually went to company voice mail. The recorded voice, Shareferably promised, I received a callback within 24 hours, but no one called me back. But I kept calling and leaving voice mail messages every week or 2, but never received any kind of response. During all this time, a live person never ever picks up the phone, ever. After four or five months of aggravation, I decide to abandon this company altogether and try a different company. I had to start all over again with the new company and all the paperwork that you can imagine that entails. SHOW NON-ESSENTIAL DIALOGUE
Again, I sincerely urge your approval of this legislation, help and act crucial wheelchair warranty protection for consumers with disabilities. Thank you.
Thank you, Michael. Thanks for your testimony.
Any questions from the committee?
Thanks. Seeing none, I'd like to call Peter Cronus,
from the Boston Center for Independent Living, Peter Cron.
Peter Cronus. No.
How about Chris Hohae?
Joanne oh, do you have questions? Oh, okay. Chris Hoey.
Maybe we'll come back to Chris.
We're trying to figure out this always suitable.
You can't respond.
No. You didn't respond. K.
And, Chris, if you're with us, the the floor is yours. Okay.
Turn. Turn. At this time, I'd like to invite Joanne, Daniel Spine Gold to testify. Joanne, are you here with us?
Now is did we find a machine?
You say, oh, Okay. Great. We'll go back. So returning I'd like to invite Rashid Bouwambo. I'm a Boston Center for Independent Living to testify.
Hello? Rashid. Hello. Good afternoon and welcome.
Good afternoon. How are you?
Good. The floor is yours.
Yeah. My name is Buwembo murshid Can you hear me?
We can hear you, Marshheed.
Please
BUWEMBO MURSHID - BOSTON CENTER FOR INDEPENDENT LIVING - HB 378 - SB 152 - My name's Buwembo murshid. I'm a I work with Boston Center for independent living, and I also work part time with5547 Home Depot. And I'm also an atom couch ambassador for the city of Summerville. Am a full time wheelchair user. And I accessed my wheelchair through a new motion. They're my providers of the wheelchair, but ever since I got the wheelchair from5576 them, the wheelchair did not work for me. I tried several times to5583 be able to call for assistance for the wheelchair to be put right, but I never used the wheelchair. And then it's only hutch pine space in my apartment, but I never used it. First of at first, it was so high. A
nd when I made a conference that the wheelchair was so high, they kept on saying that that was the wheelchair that I ordered for, that there were no room for that wheelchair to be to be changed. And then eventually, they ordered for some parts. It was lowered a little bit, and they put another, like, plate which I never wanted on the wheelchair. The wheelchair is so weak, yet5629 I'm a full time hustler with the wheelchair. Like, every time I push it around, the path falls off, when I put the wheelchair into for example, I always use the lift and the ride every time they are the Uber driver or lift driver puts the wheelchair in the car, I lose a part. So at the end of the day, I was with a wheelchair that would have no parts any anyway.
And every there's no one to complain to people because even the last time that wheelchair was given to me a technician was supposed to come back and mix the last change you need. No calls, no anything, So I5677 resorted to going to a to a second hand wheelchair provider to buy another wheelchair. It's the wheelchair I'm using, but the wheelchair I provided for by my insurance is a wheelchair that I never used. So That's one of the issues I'm facing. And I hope there are quite a number of people which are users out there that are facing the5705 same problems. When they drop when they give you the wheelchair, or when there were chairs given, chances of having it prepared on time is a very, very, very big problem. SHOW NON-ESSENTIAL DIALOGUE
Thank you, Mashid. Questions from the committee.
5723 Sorry?5723
Seeing none, Thank you for Thank you very much, sir, for your testimony. I'd like to returning. I'd like to invite Chris Hole, is he in the room? Are joining us virtually? Press, welcome your testimony at this time.
CHRISTOPHER HOLE - CONCERNED CITIZEN - HB 378 - SB 152 - Thank you. Good to see you again, senator Cronin I say, I was happy to celebrate when this legislation cleared the Senate in the fall. At the end of the session. And I'm hopeful that this will be approved at this time. I really don't I'm a power and manual wheelchair user following final court injury in 2017. I have a, I think, 11-page letter account going through accounting most of the challenges I've had with my wheelchairs. But as when Arthur Torrey said, this legislation is just the start for addressing the larger issue, which is one which the metaphor of not being able to use a bathroom the thought of all of you are in semi abled chairs. They have wheels on them, but you're able to get up and walk away.
If that chair was broken, you wouldn't be able to leave. I'm in my home testifying because I in this case, I actually could get down. I mean, actually in two other meetings at the same time. There's a lot going on. Earlier this year, I was out. one example is I was out I've come to actually been actually, I think it was act after seeing you, senator Cronin. I rode the train back, got all the way back to my home, and you make well, almost to my home station, got off the train, and then crossed the street, and the battery died. It turned out that the reason the battery died was that these were replacement batteries and when the company brought them, they didn't give me a replacement charger. So the battery over a few months, it died. I called my friend Michael Mewey who was testified earlier.
He was in his van but he was out of state. Luckily, Evan had another friend who was able to rescue me and get me to my house. Otherwise, this 6$3,000 wheelchair, 500 pounds would have been stuck. At the Stony Brook Station. That began a long process to get it fixed. The last thing I would say about this is I don't want we I hear the term wheelchair bound. It's really we're freed by our wheelchairs. We can do just about everything any of you can do in a wheelchair is that that's functioning. But we're imprisoned when our wheelchairs break. We could be bed bound or house bound. We don't want to be that way. Please move this forward and let's get it across the finish line. Thank you very much, Chris. Thanks for your attention. Thank you,5940 everyone else. SHOW NON-ESSENTIAL DIALOGUE
She's assembled.
And it it's great to see you again5944 as well. Questions from the committee.
Seeing none Chris, Thanks for your testimony. At this time, I'd like to invite Joe Belil. From Easter Seal, Massachusetts. Joining us virtually. Joe, are you with us?
Yes, I am. Can you hear me?
I can't hear you. The floor is yours. Thank you. Good to see you.
JOE BELLIL - EASTER SEALS MASSACHUSETTS - HB 378 - SB 152 - Good afternoon. Tier Corona, Vice Chair, Keith. Dear members of the joint committee of consumer protection and professional licensure. Thank you for the opportunity to testify virtually. My name is Joe Bellil5979 I live in Holden, Massachusetts. I'm the Vice President of5983 Public Affairs in youth services for Easter Seals of Massachusetts. I'm here to support and act expanding wheelchair warranty protections for consumers with disabilities, and that's house bill 378 senate Bill 152. Thank you, Senator Cronin, and Representative O’Day. I've been a manual wheelchair user for over 50 years. I've had my share of wheelchair breaking down and being stranded.
I've waited to get wheelchair parks and repairs done on several occasions. I've also been working full time for about 40 years. I know how critical it is to have a working wheelchair. I've had coworkers not be able to work for weeks because they were waiting to get their wheelchair repaired. This has created an impediment for people with disabilities wanting to work, and we don't need any more barriers to prevent people from disabilities from working. Without my wheelchair, I cannot get out of bed or use the bathroom. Never mind being able to go to work. My wheelchair is both my legs, and my personal aid. It gets me places and can carry my personal items that I need. I've played wheelchair basketball for over 30 years.
And I've learned from other players using wheelchairs how to fix a flat tire, replace front casters, and other small repairs. These players learned how to fix their wheelchairs out of necessity. I'm fortunate to be able to do some of these repairs, but other people6070 are not able to do the repairs, or have power chairs, which are much more complex and require skilled technician. Wheelchair manufacturing and providers need to be more responsive to the needs of wheelchair users. We need to have protections in place to hold these parties accountable. Residents in Massachusetts needing wheelchairs need to have this support. And so please support I'll spell 378 and senate bill 152. I've sent written testimony as well. Thank you. SHOW NON-ESSENTIAL DIALOGUE
Thank you, Joe. I appreciate your testimony. It's good to see you.
See you.
Any questions from the committee?
It's seeing none. At this time, I'd like to invite Meghan Hoffman from northeastern University to testify.
Mister mister chair.
Hello? Yes.
My name is Megan Hop.
Who's that?
Does he want to testify? Representative? Are would you like to testify?
I had a I had a I had
a question for Joseph. Question.
I'm sorry. Go ahead.
REP HOWITT - Joe, you seem to have a good background with these chairs over the years. I guess my first question, who actually is the dealer or do you buy them directly and where are most of them made? I heard someone earlier talk about wanting to buy a Canadian chair. Is there a difference? Are we getting substandard chairs in the commonwealth or in the United States versus Canada, for example. And these companies that repair them are the same ones that sell them and are they just hiring incompetent individuals just to bill out the wheelchair owners and or the insurance?
BELLIL - So I can speak on manual wheelchairs, and I know that there are a variety of vendors, of course, this quickie action and other manufacturers. Considering where to go to get them. A lot of times, I mean, if you do private pay, you're able to do there's a lot a lot of online entities too like Sport Aid, where you can purchase wheelchairs and things like that. But If you're dealing with mass health and things like that, then you're going to be more yeah. They have to be more selective on different manufacturers. So On the power wheelchairs, I don't have that understanding. I'm sure the power chair users would be the better at commenting on that. SHOW NON-ESSENTIAL DIALOGUE
Thank you.
Thank you very much representative. Thank you, Joe. Meghan Hoffman. I'd like to invite you. Sorry about that. The floor is now yours.
No problem. No problem at all.
MEGAN HOFMANN - NORTHEASTERN UNIVERSITY - HB 378 - SB 152 - Thank you for the opportunity to speak today in support of house bill 378, and senate bill 152, an act expanding wheelchair warranty protections for consumers with disabilities. My name is doctor Megan Hoffman, and I live in Boston. I'm an assistant professor of computer science and mechanical engineering at northeastern University, and my research career has focused on helping people with disabilities, access, maintain, repair, and personalize their assist devices, including wheelchairs. I'm also a disabled woman who sometimes needs a cane to walk a stand.
Today, we've heard a variety of stories and will continue to hear stories demonstrating why access a timely and affordable repair of realtors is essential to a quality of life as a researcher who studies how people with disabilities address breakdowns in their assistive technologies, I want to share that these stories reflect the research6289 on assistive technology repair and the urgency of the issues addressed in these bills. Multiple studies have shown that the lack of access to timely repairs of wheelchairs causes significant increase increases in adverse events, and overall, negatively impacts our community's health and safety. Based on my own research.
I want to highlight a key feature of this bill that would positively impact wheelchair repair and reduce adverse events. The spill will require manufacturers to maintain stockpiles of common parts for wheelchairs. And across the medical and assistive device manufacturers, Not just wheelchairs. Unlimited supply of parts can cause major failures and harm and harms consumers of those devices. During the COVID 19 pandemic, we saw this effect clearly as critical medical device supply chains were disrupted. Under the bill, residents of Massachusetts who use wheelchairs have consistent access to timely repairs regardless of the limited supply chains.
During the COVID 19 pandemic in consultation with members of the NIH, FDA, and VA on a panel host by the Wilson Center We developed recommendations that medical and assistive device manufacturers maintain such stockpiles of critical parts to ensure timely repair and access to critical devices. Finally, I want to note that this bill is a critical first step towards ensuring full access for people and wheelchairs. This bill does not go far enough to guarantee the right of wheelchair users to repair and maintain their wheelchairs. My research has demonstrated that regardless of legal limitations in complexities.
People with disabilities will work with their comprehensive network of healthcare providers and community members to maintain and repair their devices because these are essential to their daily lives. Devices pick down over time, that is inevitable, however limiting access to repairs to manufacturers is the root cause of delays that causes these adverse events. I have also submitted a written testimony including citations and relevant peer review literature on this subject, and I will make myself available to community members if they have follow-up questions on the state of the research. Thank you for your time. I urge you to vote House bill 378 and senate bill 152 favorably out of committee. Thank you. SHOW NON-ESSENTIAL DIALOGUE
Thank you very much.
Questions? Representative on you?
Patient, we feel the bill doesn't go far enough.
DONAGHUE - Thank you. Looking for clarification where you feel the bill doesn't go far enough, are you saying that6423 right now repairs are limited to the manufacturers and you feel a more robust competitive industry would help that? Or am I misunderstanding what you're saying?
HOFMANN - Yes. That's6436 correct. So this bill would particularly, you know, in regards to how people6440 would go about their repairs. They have6442 to go through their manufacturer, and this only requires the manufacturer to provide the stockpile of parts for their own repair abilities. A further action for a right to repair bill might include the responsibility of the manufacturer to provide these parts for sale so that people can6458 go to other providers who might be able6460 to provide more timely support. So, for instance, common parts that6464 are specific to a wheelchair would be available, and then you could bring it to another provider who's willing to do the repairs. There are similar bills like this in Colorado that have passed. And so I think this is a really critical first step, and I absolutely support this bill. However, I think there is further action that could be taken.
DONAGHUE - Thank you very much. SHOW NON-ESSENTIAL DIALOGUE
Thank you. Seeing no further questions. Want to6488 just6488 say Thank you for your testimony and invite Richard Lavasa to testify. 1
Hello. Good afternoon. Can you hear me?
I can hear you, Richard. Good afternoon.
RACHEL LEVASSEUR - CONCERNED CITIZEN - HB 378 - SB 152 - Thank you for giving me the opportunity to speak with you in support of senate bill 152 in House bill 378. My name is Rachel Levasseur, and I suffer from primary progressive multiple sclerosis. I rely on a complex electric wheelchair and assistance with all daily activities The one thing that stings the most is the fact that I'm completely dependent on others and not able to move without my electric wheelchair. I'd like to highlight one situation with you right now that's currently ongoing. A common condition for people who are wheelchair bound is a possibility of getting pressure wounds also known as pressure solace, from constantly sitting.
In my case, I'm sitting from the time I get up until the time I go to bed. I have to constantly shift my body to lead pressure on my buttocks. The shifting is done via tilting and reclining so I can move maneuver my body for pressure relief. The wheelchair I have is great for this when it's functioning and it's designed. On the controller, will joystick up my wheelchair. There's a button that allows me to change from drive mode that is driving the chair to another mode that allows me to tilt and recline. As I sit here today in front of you, there are These two functions sometimes work and sometimes do not. This has been happening for several months.
I spoke with the wheelchair provider, described this situation, and they said you need a new joystick. We'll order it for you. To reiterate, this has been going on for months. With no completion date in sight. Let me review the actual scenario to you as the better illustrate the situation. Just this past weekend, I had driven out on the onto my back porch and was hoping to reposition myself for pressure relief, and the chair wouldn't respond. I was stuck in drive mode, but after a period of time, the chair responded and I was able to position myself. Luckily for me, this incident happened at home.
Can you imagine being in a restaurant having a meal with friends and when it comes time to leave, your chair won't move. It is an embarrassment to say the least. What if I was on the tee and could not get off? What if I was on Boston Common instead of the poor? These are things that actually happen. This is what disabled people feel like and go through every time they need their wheelchair repaired, it's frustrating to say the least A nonfunctional wave here in my case exacerbates the possibility of pressure sores is6643 a trickledown effect here. I'm currently experiencing a pressure sore that caused by the very breakdown of my chair.
It's increased the number of times I need to see doctors and nurses for treatment, the negligence of companies is really making me sick. The wheelchair repair system as it is currently exist is the health care crisis. There are many reasons why repairs takes so long. However, these two bills will make a difference. If a wheelchair had common provider had common items in stock, we get repairs done quicker. There are methods that are in the provider's control. But that's not the whole story. A lot of them blame the pandemic and supply chain issues, but that's been going on long before the pandemic. SHOW NON-ESSENTIAL DIALOGUE
Miss Silva, we're at time right now. And I want to give the committee an opportunity to ask a question.
Sure. Thank you.
I see, Nana, I I want to say Thank you, mister LaVasa, for providing testimony today in and sharing your story that
And I'll follow I'll follow-up with written testimony as well.
We'd be very grateful for that. Thank you very much.
Thank you.
At this time, I'd like to invite Ellie Vargas to testify before the committee. Is Ellie with us?
No.
Alex, Floyd Vargas. Alex, are you with us today?
Alex, you it looks like you're muted.
Can you hear me better now?
We can hear you now. Thank you for joining us this afternoon. Before is yours.
ALEX VARGAS FLOYD - CONCERNED CITIZEN - HB 378 - SB 152 - Okay. I've had about three power wheelchairs. They've all been read with the mostly water resistant casing for the batteries I've been dealing basically with national seating and mobility. That was the only company that I knew about. one of the wheelchairs was scoot a store, but that closed because of all the overbilling and the fraud count with them. So one wheelchair, actually the motors exploded. That was the one from the scooter store, and I actually had to take that to the dump. Because everybody in the building was complaining about the smell, and I couldn't get anybody to repair it.
So that went off to the dump. So unless somebody, you know, rebuilt it, that's a waste of both the batteries and everything else. So I've learned that some parts or some wheelchairs can be recycled, but definitely not that 1. The second, power wheelchair I got from National Seating and Mobility. Again, many complaints I've had with this company, unfortunately. I actually had to call Medicare and they actually had to do a conference call. And they told National Seating and Mobility that they were out of line. So there there's been a lot of issues with either calling them, following up with them, trying to have them contact me back.
This third wheelchair, the second one I donated to someone else in the building. The third wheelchair took almost 10 months to get a repair because6878 they had to repair the casters and the screws and other gears because, unfortunately, it got damaged as I was trying to go across a sidewalk in Chelsea, Massachusetts. The shock absorbers actually fell off the wheelchair and I could not use it because it was not safe to drive It was very shaky and there was only two there was only one part that fell off the wheelchair. But that took almost 10 months to repair Finally, CCA, the insurance had to call me and said, we understand you're upset.
Let us handle it and we'll try to get it fixed. Because National Seating and Mobility wanted to wait another month to, you know, finally get it fixed they brought6929 it back. It was like 95% fixed. one other issue someone else helped me fit without their help. And now there might be a problem with the battery, which that has happened with them before that the batteries haven't worked So we need more we need more options, and we need better warranty, and, hopefully, a third party to help fix these wheelchair, so you don't have to wait a year to get it fixed. SHOW NON-ESSENTIAL DIALOGUE
Thank you, Alex. I'm grateful for your testimony here today. Any questions from the committee?
Seeing none, I want to Thank you again and invite Lucy and Guerrero to testify.
Lucy, are you with us?
Not in the room? I'd like to invite Anne Joh Hanson to testify.
Anne, are you with us?
Yes. I am.
Great. We can6987 hear you loud and clear, and the floor is yours.
ANNE JOHANSEN - CONCERNED CITIZEN - HB 378 - SB 152 - Wonderful. Thank you to the committee for this opportunity to testify in support of House built 378 and senate bill 152. My name is Anne Johansen. I live in Hanover. And I use a power wheelchair. I got a new wheelchair last September. It was supposed to help me sit up straight. I'm My right side has gotten weaker, so I'm constantly leaning that way. And now I have scoliosis. To add to the rest of it. And I told my doctor, she going to put me in, you know, like this cast thing. And I'd said, wow, that's not necessary.7043 I'm just ordering my new chair. They said I should have7047 it soon. And it's going to have this vest on it that will hold me in place so that I'm not, you know, going crooked or leaning over it so much. And she said, okay. So now next week is my annual visit with the doctors. I
t knows something about my disease. And I have, well, my chair. But it has been completely unusable7072 since I've gotten it. I've never been able to use it. They have tried many times to reprogram it. It veers to the left sharply. I've7086 twice driven off the ramp going up to my wheelchair. I bashed into walls7092 and hurt my leg quite badly. So it just stayed for me. I cannot I can't deal with it. So it's caused me quite a difficulty with my with my back and something potentially serious that I'm pretty unhappy about. I I had changed from national seeding to me most in in hopes that they would be more reliable and better, but that it hasn't proved to be that way. So, this bill is very important to me and to all the other speakers. And all the people in the commonwealth that we represent So I really hope the committee will be able to favorably support House Bill 378 in senate bill 152. Thank you so much. SHOW NON-ESSENTIAL DIALOGUE
Thank you very much, Anne. Questions from the committee.
Seeing none. I want to Thank you Ian for your testimony this afternoon and invite Lucy Guerrero to testify.
We are hit on twice. Sorry.
I'd like to invite Brianna Zimmerman from the Stavros Center for Independent Living to testify.
Hello.
Hey. Good afternoon.
Good afternoon.
BRIANNA ZIMMERMAN - STAVROS CENTER FOR INDEPENDENT LIVING - So my name is Brianna Zimmerman I'm a resident of South Hadley, Massachusetts, and also the systems change advocate at Stavros Center for Independent Living., serving the disability community in Hampshire, Hampton,7199 and Franklin counties of Western Massachusetts. I'm testifying today on my and Stavros' behalf in support of an act expanding wheelchair, warranty protections for consumers with disabilities. H. 378 and S.152. Independent living means that we have the right to have self determination7218 to enjoy the same opportunities as our nondisabled peers, to live, work, and participate in our communities.
Stavros Center for Independent Living strongly supports the wheelchair warranty bill because It is one way to really materially improve the lives of people with disabilities who use wheelchairs. Millions of people across the country are wheelchair users. Thousands across the state are wheelchair users, and for many having a functional, safely operating wheelchair is integral to maintaining independence and moving around our community. Why myself am not a wheelchair user, many friends, colleagues, and family members were or are wheelchair users.7257 Wheelchairs can cost tens of thousands of dollars, and most need repairs quite frequently.
When repair needs go unmet, this can be extremely dangerous and limit the independence of our communities. Currently, many wheelchair users are forced to continue using wheelchairs that are in need of repair. Researchers estimate that more than 50% of wheelchairs break down in a typical six-month period. And people frequently wait multiple weeks or months even to get their wheelchairs fixed. If someone left if someone is left without a wheelchair or continues to use a defective wheelchair they risk going without important resources and engaging in the community or risking their sleep deep to participate in daily life. In the7298 ways that non wheelchair users are able to.7300
DLA casts around the home such as cooking, cleaning, using the bathroom can be7304 impossible without a working wheelchair. Accessing transportation, medical, and mental health care, social services, employment, civic engagement, education, food, and clothes shopping becomes dangerous sport nearly impossible. So do enjoyments or hobbies such as socializing with friends, going to restaurants, exercising, participating in clubs, enjoying the outdoors, another activity that many nondisabled people take for granted and may consider marginal, but are really integral parts of our well-being. A defective wheelchair can even be fatal in the case of pressure sores
or an accident. There are broader sequences for our society when people with disabilities are unable to engage in daily life. People with disabilities become invisible, unacknowledged, disregarded, dehumanized, and devalued. This bill will make simple common sense common sense changes to state laws, which hold wheelchair providers accountable by expanding I'm sorry, by expanding wheelchair warranties from one to two years and other very important measures. Stavros and myself, urge you to please report this bill out of committee favorably. Thank you for the opportunity to testify. SHOW NON-ESSENTIAL DIALOGUE
Thank you. We7378 were grateful for your testimony this afternoon. Questions from the committee.
Seeing none, Thank you, Brianna, and I want to invite at this7387 time Carmen Rosado from the7389 Stavros Center.
Good afternoon. My name Good
afternoon, Carmen.
Can you
hear me?
I can hear you.
The floor is yours.
CARMEN ROSADO - STAVROS CENTER FOR INDEPENDENT LIVING - HB 378 - SB 152 - Yes. I am Carmen Rosado. I work at Stavros center for independent living. And located in Amherst, I also work at the office in Amherst where Brianna works. And we have an office in Springfield, Massachusetts, and also in Greenfield. Which served three counties and then Hunter in front of me. I had been physical disabled since I was four months old from a surgery that went really wrong as a kid. I came from the Dominican Republic and when I was at home, back then, I couldn't go out because I didn't have a wheelchair. I spent all my entire year use in rocking chair and my bagged in when I was 16, I came to the United States and got about a manual wheelchair, which allow me to at least go instead somewhere better.
Then in 19 96. I got power wheels here that allowed me to walk to my graduation at high school. I was able to graduate from Hollywood Community College and twice from the University of Massachusetts without my wheelchair, I couldn't accomplish that. I worked different committees for people with disabilities in the PCA program and also in transportation. And it's important for me to have this wheelchair as also our consumers because our wheelchairs, our legs, and we are not wheelchair bound. We are we are share uses user, and I would like this important bill to pass because we are not asking for7556 something that is not necessary. Thank you.7562 SHOW NON-ESSENTIAL DIALOGUE
Thank you so much, Carmen.
Any questions? Thank you.
Next, I'd like to invite Lynn Horn to testify to the before the committee. Lynn, are you with us?
Yes. Can you hear me?
We can hear you loud and clear. The floor is yours. Thank you.
LYNN HORAN - CONCERNED CITIZEN - HB 378 - SB 152 - Good afternoon. People like me who are wheelchair users do not have a union, a professional organization, or a powerful lobby to support us when we are facing discrimination or a roadblock to our freedoms. What we have is you. Our elected representatives. So I hope you understand the sincerity of my gratitude when I Thank you for this opportunity to speak before you. On these important bills, House 178, and Senate 152. My name is Lynn Horan, and I live in Holyoke Massachusetts currently. I was diagnosed 37 years ago at age 27 with progressive MS as well as rheumatoid arthritis. I use a 400-pound power wheelchair due to lack of lower and upper body strength and diminished diaphragm muscles.
There is an old expression referring to discrimination that goes, it's not what you don't get half as much as it is what you don't get to give. People who are disabled want to work want to contribute community want to raise their children want to take care of aging parents want to maintain independence while engaging in their lives.7670 Our wheelchairs7671 help us to do all that as long as they are functioning. Most power chairs cost as much as car. If you aren't as lucky as I currently am to have adequate health insurance, and many people do not have that insurance. My first one was $36,000 charge. My second one was $46,000. Blue Cross Blue Shield will only allow you to get a chair every five to 10 years, and even a car you can get a five to7706 10 year warranty, as you all must know.
But there is no such thing for us. Parts fall apart long before 4, that five years is up, batteries don't last long, and two wheelchair companies pretty much on the market. In January, my husband who works full time, ruptured his kill leaf tendon in one leg and needed a need placement on his other leg. He was the able-bodied 1. So both of us were suddenly disabled, and I was the only one who could drive. Also, in January, where are you going to build care? From national seating and mobility with 03:10 miles on it. That's saw had a remote control that stopped7751 working. I placed my order with national seating and mobility they promised me a loaner chair which I never received, and they ordered a new remote.7761 After a month of no contact, from them. I contacted tacked them.
They blamed it on a shortage of supplies, but the fact was a month after that, they still had7774 not even gone through the process of approval, even though I have excellent insurance. After waiting two months, national seating and mobility replaced by newer wheelchairs remote. Within a week, the new remote malfunctioned. I ordered a new one over a month ago, and I still have not heard back from him. It's been a nightmare trying to figure out what to do. I'm sorry. I'm running out of time, I see. Let me just simply close. I urge you to vote for these two bills favorably out of committee. It truly is the very least we can do to make sure that the disabled community is valued, and not exploited. Thank you so much for your time7819 today, and in the future. SHOW NON-ESSENTIAL DIALOGUE
Thank you very much, Lynn. I'm grateful for your testimony. Questions from the committee.
John Kelly, this year. Okay.
This time, I'd like to call Susan Bergman to testify. Susan, are you with us?
Yes. I am. I don't know if you can hear me.
We can hear you loud and clear.
Awesome.
SUSAN BERGMAN - CONCERNED CITIZEN - HB 378 - SB 152 - Thank you very much. Thanks for the opportunity to speak today in support of these bills. To expand wheelchair warranty protection for consumers with disabilities. My name is doctor Susan Bergman, and I live in Newton. I'm7862 now retired. But I practiced rehabilitation medicine for almost 40 years. I cared for people with spinal cord injuries and other complex disabilities, that cause paralysis. For my patients, wheelchairs are vital equipment. Wheelchairs that fit and work properly. Level the playing field and allow paralyzed people to7883 do everyday activities that most of us take for granted. The right wheelchair allows the freedom to get around at home, be out and about in the community, go to work, be with family, and enjoy life.
The chair becomes their arms and legs and allows them to control their environment. Opening doors, turning on lights, and even holding essential breathing equipment. Today's incredible technology allows people who survive life threatening injuries or illnesses to live active and satisfying lives. The catch, they're complex pieces of equipment, and prone to defects and breakdown. In order to be safe, everything has to be in working order. If something breaks, it has to be repaired or replaced. Some people have a backup, usually an older chair that doesn't fit that well anymore. But others don't have anything. And imagine if they can't have a wheelchair, they get stuck at home, usually in bed. Not a good place to be for even a couple of days.
Let alone weeks or even months. It affects emotional well-being and it threatens physical health. Decades of medical literature can confirm that prolonged immobilization threatens circulation, breathing, bell and bladder function, and skin integrity. Unfortunately, several patients in my own practice died of preventable complications, including pressure sores and overwhelming infections acquired during periods of enforced bed rest while waiting for their chairs. That's simply unacceptable. These bills7983 will require timely wheelchair repairs, provision of loaner chairs, and they will prevent a lot of complications. They will protect the health, independence, and dignity of people with disabilities. So please vote them favor favorably out of committee. Thank you for your time and for listening. SHOW NON-ESSENTIAL DIALOGUE
Thank you very much, doctor. I'm grateful for your testimony and and appear and you appearing before us this fornoon. Questions from the committee. Seeing none, want to invite Ryan Eunis to testify. Ryan, are you with us?
Hi. Can you hear me?
We can hear you.
RYAN YUNAS - CONCERNED CITIZEN - HB 378 - SB 152 - Yeah. My name is Ryan Yunas. I8023 live in Boston, and I wanted to speak here because I'm a8027 wheelchair user, power wheelchair user, and I did want to urge you as well. To vote on the spill, both of them. I can't really echo as echo quite enough just how apt everyone has been so far. In sharing their experiences, I've had the same ones where we have we have long periods of time without equipment without any help, repairs take ages. The last repair that I had on my chair took around a year, and one of the biggest issues is that these companies will not ship parts until8063 all of them have arrived at8065 their distribution center.
So if you need, for example, tires and a joystick and some super something that's not quite as critical, they won't ship any of that until all of it arrives at time. And with back orders, not all the parts are available all at8083 once. So they would take a lot of their time to just bring all of that together. I do also want to say that8091 As much as I am Thankful for the fact that we have these chairs, it doesn't make up for the fact that they are also constructed pretty badly. This bill, while, is a great start, it's lacking in so many ways. In8108 making sure that persons with disabilities, and I really want to stress this, are not just given this luxury or right. This is a human right.
I don't think I think if8120 you go to any developed nation that's just as rich as us or really on our level, personal disabilities aren't treated like this. They don't have the lack of access that a lot of people in America do. And is particular and even here in Boston8136 where we're actually much more fortunate than other states in in Massachusetts. So I do want to employ you to actually look upon that itself, the fact that this reflects really badly on us. That we can't take care of our own people and that we allow them to stay at home for ages on their own. And8159 I really do want to say that one of the things that strikes me to the most is that personal disabilities are much more likely to have mental health issues like depression.
And anxiety. And you're then having them stranded at home, which is that leave the complete opposite of what any mental health practitioner will tell8176 you you should be doing. And having them feel anxious about8180 going out, from my own testimony, which I've submitted in writing, my tilt function was constantly pushing forward. While I was moving. So my chair was literally shoving me out of it. And this part took a year, and even when it came after around nine months, I will tell you that it was defective so they had to then reprogram it and get a replacement. Thank you for letting me speak. SHOW NON-ESSENTIAL DIALOGUE
Ryan, really grateful for your testimony and for you joining us virtually this afternoon. Thank you very much. Questions from the committee. Seeing none like8215 to invite Christopher Hart
Christopher, are you with us virtually to testify?
Christopher Hart? He's here. Okay. Oh, great. Good afternoon, Christopher. It looks like you're muted right now.
CHRISTOPHER HART - HB 378 - SB 152 - CONCERNED CITIZEN - Thank you for the opportunity to testify. My day job includes design at MBCA since8261 July.8261 Previously,8261 I was president appointee to the United States Access Board, and prior to that I was the president to the institute for human centered design. I say it in with as context, can I understand it for 40 years of my life with CP, I have to put it on a power screw you and empower chair for mobility and to work and travel and raise time? Family and you're behind English. In quite 12, EE0HHS at the Institute. And I would fire the team to look at a complex DME market because both DMR, DMR, and that's how it would how it is to retain quality DME8347 services. What we found was always significant barriers in a reimbursement model. A mess. How advanced you guys are driving? I'm anxious. Turn off. Fan.
We're we're driving a consolidation of your DME. That's it. We are down to two vendors. Now I certainly see and new motion. Together these two vendors control 40 states markets. here is no incentive in the reimbursement model. For quality of hack or for reliability of hack. Even though, a coupon, like, they do his trick. He's manufactured by a company called Payne Giles. Look at on8431 actual that equipment for that coach. And, actually, all of that equipment is much more doable. And what is present today in the complex DME by it. Hi, hooey. I would just note that today, you can go by an e bike or each shooter, it8464 does 15 miles an hour and move move. Roughly 35 miles are charged by power to is every thousand dollars worth of equipment still has the same 15 mile battery range. It it did when I got high school in 1990. Who actually innovate8505 in this market. So8509 my honest bill is a good first stop. SHOW NON-ESSENTIAL DIALOGUE
As oh, I'm so sorry about that.
Thank you, Christopher. I also want to Thank you for appearing before the committee today, and I want to Thank you for your expiring example and commitment, not just to the Commonwealth, but the country and your public service. So Thank you. Any questions with Committee?
Thank you, Christopher. At this time, At this time, I'd like to ask Rick Glassman from the disability law center. Rick, if you were with us, to testify.
RICK GLASSMAN - DISABILITY LAW CENTER - HB 378 - SB 152 - Hello. Thank you, senator Cronin, and vice chair. Keefe and members of the committee. I'm here today to support as others have said at 152 and house 378. I won't say a great deal. III think I can't say a great deal to add to the stories that you've heard. I think8587 in some the conclusion here is that our system for repairing wheelchairs is even more broken than the wheelchairs that it intends to fix. The system is thoroughly broken and needs to be corrected, we think, by legislation. So I wanted to say something about how we got to that conclusion we at the Disability Law Center have been working on this problem for many years.
Listening to people who use wheelchairs. And in any gathering, folks who use wheelchairs. This is what you hear, what you heard today, except with increasing frequency because over years, Medicare consolidate billing has reduced the market to essentially two providers. And so it's gotten worse and even less competitive. So these are the stories that you hear. We've been listening to those stories. We've been researching, doing policy analysis, trying to figure out if we can help use existing8646 legal tools, educate wheelchair consumers about those tools.8650 At one point, we were so desperate. I mentioned this at the last hearing is that we rented a hotel room and invited people from the wheelchair industry, providers, manufacturers, public payors,
Medicare, Medicaid, and wheelchair consumers to all come to a hotel room and brainstorm together.8668 And none of that essentially has worked and8672 has brought us to the point of look needing to look at the law that we have now to figure out how it stands in comparison to other states. And when we did that, we did a 50 state survey, which we can make available to staff of the committee as we did last session. And what we learned is that by and large, other states have more rigorous consumer protections. And I don't think consumer protections alone are going to get us there. But I think we can do more to level the playing field by having some of the same protections that are available in other states. This law is not perfect. As many people have said, we need some larger structural reform.
But for many of the people you've heard from today, they can't wait. They need some help now. And I think it's really incumbent upon the legislature in the absence of other solution to essentially level the playing field and put some bargaining power into the marketplace where none exist. Because wheelchair consumers don't have any cloud against two large national providers that are accountable to venture capital. I'll finish by just going back to an appoint that was originally made about human rights health care, equity, civil rights, dignity, and respect. These basic core values that I think are beneath this effort. And what I wanted to say about that is okay. SHOW NON-ESSENTIAL DIALOGUE
Rick, I'm I'm very grateful for for your test Lemonian for you joining us. I want to give the committee an opportunity to ask questions. Representative
DONAGHUE - Hope it's a quick question. As I understand it, this law would mandate a two year warranty. So currently in other states, do the warranties vary because of state laws or do the manufacturers typically have, like, manufacturers do their own warranty period?
GLASSMAN - Well, in the absence of any wheelchair repair law or wheelchair8797 lemon law, it's left up entirely to the manufacturer. But many states do have some statute that has some level of protection. Our current law is one year. That's the case in other jurisdictions. But this this statute this bill would raise it to two years as is the case right now in Connecticut, Rhode Island. And the one of the most important things in addition to that is that the current wheelchair repair law, wheelchair, lemon law, doesn't provide any remedies to people who acquire their wheelchair through a public payor. You have to pay out of pocket. And you've met all these people today who do not have that experience by and large. And so this bill would provide that protection so that the warranty really could be used by people who SHOW NON-ESSENTIAL DIALOGUE
8870 final8870 corner here. John Kelly. John, are you with us?
Can you hear me?
8882 John,8882 we can hear you. The floor is yours.
JOHN KELLY - SECOND THOUGHTS MASSACHUSETTS - HB 378 - SB 152 - Right. My name is John Kelly I and I live in Boston. I've been paralyzed below this show under a100% pop interface. I am also the director of Second Thoughts, Massachusetts. Disability rights advocates against assisted suicide. We voted to support this bill for civil and human rights issues. I hope you will pass this bill as people have said, if not, a total solution, but8922 it's a start. When I first interacted with wheelchair repair8926 companies, it was a shock how in differently I was treated. As other others have said, I think because most of us wheelchair users depend on funding that we don't control and good old patronizing ableism.
Repairs have always been slow but in recent years, the company, National Seating and Mobility can take weeks or months to place apart. I'm now waiting for an extension on my display, so I'll be able to see it better. And I've been waiting for that for months. I've been stuck in bed for weeks waiting for repair. Today, I'm not stuck in bed, but I'm here to8972 get some work done. It can be depressing and isolating. And so please do pass this And, you know, I I also think we need to work on fixing the whole procurement process. You know, waiting for an approval8993 or prior authorization can take weeks8997 and months and these companies have to be compelled to grow by better service. Thank you very much. SHOW NON-ESSENTIAL DIALOGUE
John, Thank you so much. I can't tell you how grateful I am for your testimony and especially your patience.
I'm I'm sorry that we had you at the end of of the list of people testifying, but I'm I'm very grateful for your commitment to stay with us and and share your story. So Thank you. Question to you. Ready. Nope.
Holly Simone. Is Holly with us?
Good
afternoon.
HOLLY SIMONE - CONCERNED CITIZEN - HB 378 - SB 152 - I can Thank you for the opportunity to testify today in favor of Housev Bill 78 and Senate Bill 152, regarding wheelchair warranty protection bills. I'm a lifelong resident of Somerville, and9056 my daughter, Elizabeth, relied on a wheelchair for 189059 years starting at the age of one, without her wheels, as we can call them, she could9067 attend school. She couldn't leave her bed and she couldn't go outside during the day with family or friends. one thing that was mentioned just now was about warranties and repairs.
The last question. I just want you to know that there are also9083 no returns after delivery. Right. So, you get a9086 blind chair that we've never sat in that's assembled with a full bunch of unique parts. And if you don't like it, Doesn't seek the needs, it's your gift. Many times, the delivery of such new chairs would require media book chairs. I've had chairs with broken brakes. I've had chairs with supports that don't stay shut. And since there are no alternatives that exist, if your wheelchair isn't assembled properly or if it's delivered in this broken state, there are moral triggers. We have waited more than a year for the delivery and approval of new wheelchairs.
Partly, it's a financial issue, it's a billing issue, it's a complicated system, and there's really no transparency that the users are the families of what you are buying. I was told buying more than two or three vendors. That maintenance and some repairs are not covered by insurance. For that reason, they do not have many environments. I was persuaded for these reasons. Needs a brand new chair. In lieu of having it, having it repaired. And as someone mentioned earlier. When you go to buy a new chair, everyone's9175 there to greet you. They're going to show you9177 this great new item. They're also there to show you one or9181 two options maybe. That increase their profit margins.
And I've had that verified in later years with some of these vendors. I once tried to choose a chair that was less expensive, was beautifully manufactured. It was comfortable for my child. And I was given such a difficulty from the vendor. They did not want to order it. They persuaded me in any way that they could to say that it was not a good chair. I got that chair twice, medium size and the large size, and I was fortunate to have done the research myself to even know that it existed. It came with a set of three Allen wrenches, and I never had a problem with anything. I fixed it myself. 1 thing9227 about being a child is that you9229 have to wait. SHOW NON-ESSENTIAL DIALOGUE
That isou want to finish up.
SIMONE - You have to wait to9233 adjust for growth. My daughter Elizabeth had this great personality. personality. She loved to get into trouble, and she would frequently figure out how to stick her neck behind the headrest and she thought this was just really funny, but none of us really did. I think one of the most brightening days is when I had called for issues with wheels. They kept popping up. And, you know, duct tape, gum, and those little tools aren't keeping them in order. So, we drove world around to the parking lot of parking school for the blind. And when we, as we stopped, two wheels on one side of her chair popped up and she flew to the ground. She laughed so hard. She9274 thought it was the greatest thing.
It was as if she was on a ride in an amusement. Park. That is not a ride on an amusement park. Seeing your child or any9284 individual fall to the ground because wheels have fallen off. Is absolutely unacceptable. Having the ability to have a warranty and having accountability, not from the manufacturers, but the people who sell this is extremely important. I do believe that this is a financial piece that can change. I just want to mention one last thing. My daughter passed away three years ago last Friday. We kept your wheelchair from six years, the only thing we saved. And the only reason I have to so that.
I could demonstrate to my municipality in the city of San Diego. How horrific it was to try to walk the streets go across the9330 curves and ambulate and get someone9332 to just sit in the chair and feel all hard it was and to see how much9336 that to stories those chairs. No one would do it. The closest I got was someone to push me. Months later, that chair I couldn't even donate9346 it. It was so damaged. It had been so deteriorated, oh, deteriorated over the year. And I I really9352 just what would like you to understand and what it's like not only to be in a chair, but9357 to be someone whose loved 1, is rowing and moving and needs to flourish in a chair. SHOW NON-ESSENTIAL DIALOGUE
Thank you very much. Thank you for your patience and and waiting to share your story too. I think every I speak for everybody on the panel when we're we're really grateful for that. Any questions from the committee?
Good. No. Just that we just looked your daughter up and she looks as a beauty, and she you can just see how vivacious she was in that photo. Just Thank you for your story.
Thank you. Appreciate that very much. Choose are all the long. Thank you.
Thank you.
Thank you.
I'd like to invite Dan Manning to testify. Is Dan with us?
Virtually?
Nope. K. We have one last one final panel today. Before we we break. But I just want9409 to on behalf of the entire committee, say Thank you to everybody and especially wheelchair users who came into state house today and their and their families.
We can't make this system better. We can't improve the law. We can't serve you without hearing your stories. I know it's9425 not an easy thing for you all to come in today or join virtually and wait9429 for a couple hours to to speak to us, but it is incredibly powerful. And we're going to take your stories with us to to do our work and do our job. So but before we we finish, I I want to say Thank you on behalf a committee, and it was a privilege to hear your stories today. I want to invite the final panel to testify.
Wayne Grough from Enkhart, John Gets from Per Mobile Inc. And Diane Raseko from National Seating and Mobility Inc. Who will be testifying today as a panel. I'd like to welcome all three of you to the committee, and we look forward to hearing your testimony here. Okay.
Thank you, senator Cron. Can you hear me? My name's Wayne.
-We can hear you loud, clear. Yeah.
WAYNE GRAU - NATIONAL COALITION FOR ASSISTIVE AND REHAB TECHNOLOGY - HB 378 - SB 152 - Thank you, sir. Well, good afternoon, Chairman Cronin, and Vice Chairman Keefe and distinguished members of the committee. My name is Wayne Grau and I'm the Executive Director for NCAR, The National Coalition for Assistive and Rehab Technology. NCART is a nonprofit National Association of pliers and manufacturers of complex rehab technology products. We focus on education and advocacy with a primary focus on establishing and protecting appropriate coverage, coding.
And payment policies to ensure that children and adults with significant disabilities such as ALS, spinal cord injury, muscular dystrophy, maintain and have adequate access to the specialized equipment related to support services that they require. I am testifying today in opposition of S.152 and S.378. Now, please understand, we do recognize there are problems with repair for complex rehab equipment. This is9531 a problem that does not exist solely in Massachusetts. NCART and our manufacturing supplier partners are working with legislators and consumers in other states to come up with solutions that will address this multifaceted problem of timeliness of repairs.
Some of the problems are simply not in our control. I'm not trying past the9550 buck. A large percentage of our9552 equipment in parts is made overseas. And during the pandemic, we saw a near shutdown of the supply change about the supply chain. While the supply chain is getting better, and that's the good news, they are still not back up to prep endemic levels. The complex rehab industry is also dealing with labor shortage just like many other industries within the commonwealth and even including of the state government in trying to find qualified people that can take care of our customers. That still remains a major problem. Our folks are big trying to fill those positions for qualified individuals.
Now the industry has come up with a number of solutions that will help to fix these issues. Diane Racicot - National Seating & Mobility We have an alternative bill that would address service and repair reform. As I said, it's multifaceted. I was I wish there was just one thing I could point to. A silver bullet.9601 And I can say, look, if we fix this, it's all going to be taken care of. Unfortunately, it's not there. We want to partner with the consumer We want to partner with all the stakeholders. The gentleman from the disability law center said, let's get together. Absolutely. Okay? We want to take a collaborative approach that will fix the issue for all residents of the state.
This includes consumers that rely on Medicaid, or any other insurance companies doing business in the state. The present bill focuses on warranty. I understand that. Our data indicate that only that's only 7% of all the repair calls we receive as equipment from people using our equipment. The solutions we are proposing work to fix the repair issues for all folks, all the consumers in Massachusetts, we are hoping that during we are hoping that in the last session to work through this with the consumers. And we were thought we were in a pretty good spot, and then the communication just stopped.
We feel that putting by putting both groups together as a general from the disability talked about in the agency together, we can come up with a bill that will work everyone and not just limited to that 7% Again, we understand this is a problem. We want to address it. We were respectively asking Chairman Cronin, vice chair Keefe and Representative O’Day was the sponsor of the house bill to please mandate. Let us get together come up with solutions that are going to work, really work to solve these issues so that we can take care of these folks that9687 you heard today. Thank you very much for giving us the opportunity to speak today. SHOW NON-ESSENTIAL DIALOGUE
Thank you, Wayne. I'm I'm grateful for for your testimony. John Gets, are you with us? John?
I am. Can you hear me?
I can hear you. Yep. The floor is yours.
Perfect. Thank you so much. And I apologize for being on my mobile, but my other device is not9709 working very well.
JOHN GOETZ - PERMOBIL - HB 378 - SB 152 - My name is John Goetz, and I represent Permobil. And we are9715 manufacture of complex power wheelchairs, manual wheelchairs seating systems, and other accessories. As Wayne said, you know, the testimony today does not fall on deaf ears. We do know that the system is broken and that there are things that we can do to try and improve the system. And just so that the committee and everybody there understands this is actually personal for me. My father is complex wheelchair user has been for over 10 years, and I'm his primary caregiver. So I take care of him and I've dealt personally with some of the issues around. Repairs and replacements of his power wheelchair.
He has had it just like a lot of folks here. A lot of the stories are very similar to what I've experience personally with him. So, again, doesn't fall on deaf ears, and9764 we definitely think the system needs to be done. I reiterate the things that Wang said. We do think that there are some bigger solutions that can help the whole system work better. And we would like to work with the disability groups on it. As Wayne alluded to last year when we9781 heard about the bill when it was initially introduced. We reached out, had a series of meetings with the with the center and thought that they were going very well. We thought we were getting to some good solutions. Unfortunately, in mid-April, we received an email that just cut off all communication.
We followed up a couple of9801 times. And still think that there's a lot of common ground and real solutions that we can get to that will help with it. You know, some of the some of the examples that were given, you know, with insurance and the prior authorizations and the requirements to get a service and repair for a wheelchair that has already had a prior authorization for the reasonable, useful lifetime of the chair. We think that that can work out and really cut down a lot of the timelines. A lot of times the hands of the providers and I can let them speak for themselves and even the manufacturers, we are bound by those time frames and those approvals. So we think that that would be a good solution.
As Wayne also said, we have been working in other states. I can sell you in my home state of Tennessee. We did just that this year, and we're able to get a bill passed. It removes the prior authorization requirements for the power and manual wheel shares. And we worked with the Tennessee disability coalition on that initiative that hopefully will be signed into law very soon by the governor of our state. So, again, I appreciate your time. You know, I appreciate all the testimony. It doesn't fall on deaf ears. We do hear and we do want to be part of the solution. And I will follow-up with written testimony of with more specifics of what we think as Permobil can be helpful. Thank you. SHOW NON-ESSENTIAL DIALOGUE
Thank you, John. We appreciate and look forward to that written testimony. Diane, are you with us?
Yes, Diane. Can you hear me okay?
We can hear you loud and clear the floor.
DIANE RACICOT - NATIONAL SEATING & MOBILITY - HB 378 - SB 152 - Thank you. Thank you for the time. I do appreciate him a chance to speak. My name is Diane Racicot. I am the vice president of payer relations for National Seating & Mobility. My role with National Seating is I actually deal with all the insurance plans, including Medicare, Medicaid, and all the locals even9909 in Massachusetts market. I'm here today just to speak to opposition. This bill not that we don't need reform, and that we don't have some improvements9918 that are definitely in the repair realm. My concern with9922 this, how is this outlined in regards to certain time frames with how the businesses ran, it's not going to fix the problem that all the constituents voiced today.
I'm 100% behind what it was shared. I know the struggles. I know I've been weak meeting9937 monthly with local advocacy groups in Massachusetts to address this, what we can do better on our side as a company. Just to give you some ideas National Seating & Mobility. Yes. We're a national. We're not trying to gobble up all the people that are out there. I'll be honest with you, congressman, and senators. We have had a number of people come up to us local providers saying they can no longer afford to do this repair business. Repairs and new equipment are two different sides of the story. And I think it's important for everyone to hear how this operates and how it works with our insurance plans.
And the policies that we as a provider have to follow in the state. And across for Medicare also. We serviced in 2019 or 2020. I had 9900 repair orders in Massachusetts alone. We have four locations covering entire state. We have 28 technicians. eight of those are in house in our branches because they set up the chairs and also we keep people in their branches to do repairs because we have most of our equipment pieces are there. In 20 21, we have over 10356 repairs that we had to do that we're10005 asked to do and pick up. I am conditionally getting calls from insurance plans saying, we don't have10011 a provider in the state. Will you be willing to pick this up even though you did not supply the equipment? And do their repairs. It's becoming a problem across the nation.
It's not just in Massachusetts. It's like a past issue. And right now, I'm looking at my numbers for 2022. It's almost toward trending towards 11000 repairs. Now we're not looking to pick up more business. We're not looking10034 to pick up more people, but it's a problem.10036 And it's the steps that we have to go through to get approvals10040 to be allowed to do this. It typically takes two or three visits to a patient's home, one to get evaluated. We don't get reimbursed for that. We don't get paid more money. We don't negotiate different contracts. The fee schedules for us or mom and pop are the same whether it's Medicare or Medicaid. The commercial plans have certain criteria that we have to submit to even go.
And do something. And routinely, we do these at a loss. And even though we're I've heard some people comment about equity and all that. We have offshore some things to try to save costs on the back of administrative stuff so we can focus more on staffing and trying to debuff those things that are being addressed. My ask of this is this Bill language how it's written to be reconsidered. And I'm really urging the committee to reach out to us providers and see and let us run you through a life in the day of what we have to go through to get this done. It is a big problem, and I really urge you guys to reach out, please. I Thank you for your time. SHOW NON-ESSENTIAL DIALOGUE
Thank you, Diane. Great for your testimony. Want to open up to the committee if there are any questions for the panel.
Yeah. Chairman, this is representative McKenna online.
You had a representative.
REP MCKENNA - I just wanted to A very because we're questioned by Mr. Grau, the contrary language or alternative language has been proposed in a house bill 202. I understand. That bill has been referred to the committee on children, families, and persons with disabilities. So while it was a little bit unfortunate not to be part of this committee to be part of the same hearing, that’s certainly a welcome committee to be10139 in front of. So just for this committee's10141 edification, that companion bill is H. 202. And, certainly, that bill's10148 not on hearing today, so I don't want10150 to go too far. But it seems to put10152 a lot of control and authority into the Department of Public Health to regulate things from the top down. So just wanted to provide that. Thank you. Right. SHOW NON-ESSENTIAL DIALOGUE
Great.
Representative. Great. Great for for those comments. Any other questions from the committee?
No. Seeing none by my record There is nobody that has signed up to testify who has not been heard. I want to confirm that with everybody with us here in person. Okay? With that
Can you hear me? Hi, this is Peter Cronis. You called me earlier, and unfortunately, I I had two meetings. I was wondering if I could testify now.
Peter, the floor is yours. Go ahead.
PETER CRONIS - CONCERNED CITIZEN - HB 378 - SB 152 - Thank you so much. I I first of all want to Thank senators and the representative who sponsored this these two bills for the warranty act. I'm a person who was born with a congenital disability known as Arthrogryposis and I also have a severe scoliosis. What basically happened to me is where there should be connecting tissue and joints between the bones, I don't have a lot of those. So my bones are fused together. What that means for me is always in a prone position. And I depend on my power wheelchair. For mobility. I work full time at the Boston Center for Independent Living. I've been working 35 years, and it's been a great honor. So my power wheelchair for me is my legs.
Without my power wheelchair, it's like an able-bodied person having no legs to get around on. Or if you use your car, it’s like having a car with no wheels. You don't get far. I have been waiting over a year to get my power wheelchair fixed. This power wheelchair I'm in now was brand new and it came defective, but the defect wasn't realized until after I'd been using the chair. What happens is the chair will not go at top speed. And I need it to go top speed when I'm tilted. To the side a little because that's how I drive. I can't drive the chair10312 when the chair is centered. If the chief if the sea to Senate, it will go full speed, but then I'll crash into walls and to people. So that does me no good.
My back my backup wheelchair will go fine when I tilt the chair a little. But my the one I use now won't. So it was a year ago, the problem was discovered that I had a defective micro switch. Now the warranty for this chair is over, Unfortunately, this is why the bill you're10344 presenting is so good10346 because now Mass Health has10348 to pay for that micro switch along with the labor to install it. When I go out with family or friends, my wheelchair basically crawls. And so they are always telling me why are you so slow and I10365 have to explain. So this bill will hopefully, when it's passed, and I hope it gets out of committee and is voted on and it gets passed this year. Will make it so that repairs a done in a more timely manner. SHOW NON-ESSENTIAL DIALOGUE
Thank you, mister Cronras.
Oh, I'm sorry. My three minutes is up.
Nope. Thank you very much. Any questions, committee?
No. I I want to confirm again, is there anybody who has signed signed up to testimony Excuse me. Who was signed up to testify who has not yet been heard.
Okay. Seeing none Seeing none, I want to remind everybody that the committee will continue to take written testimony And I want to entertain a motion to adjourn this public hearing. So whoa.
Correct.
Second? All those in favor? Alright.
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