2024-02-01 00:00:00 - Joint Committee on State Administration and Regulatory Oversight

2024-02-01 00:00:00 - Joint Committee on State Administration and Regulatory Oversight

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REP CABRAL - So the first Bill before us today, no one has signed up to testify. It's, House 4210, sponsored by Representative Cutler. It is an Act establishing Massachusetts learning disability screening day. So if anybody would like to submit written testimony on this, you can, to the committee. You have until the end of the week to submit that written testimony. So we welcome any written testimony on any Bill, so we can have a good record of, it for future reference in case anybody wants to know who was interested, who testified, and who didn't. Okay. So the next one will be Senate Bill 2557 was sponsored by Senator340 Collins. It's not relative to equal access on the DCR roadways. So we have in-person testifying first, I believe, Miles Byrne.
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MILES BYRNE - CORCORAN JENNISON - SB 2557 - Good morning. My name is Miles Byrne, and I work on the Columbia Point Peninsula. I actually have a little bit more history than working there. I went to get my master's at UMass Boston. I worked as a youth worker for the old Columbia Point and391 then left, came back, and ran Copper Point. These are all on the peninsula. Now I work for Corcoran Jennison as a development director. So there're four decades that I have known this peninsula. I was very concerned that this access to DCR might somehow be in somebody else's hands taking away, the opportunity for others to enjoy this spectacular peninsula. I'm here today to just support Nick Collins in recognizing, that DCR should maintain control over that and provide us the access That we have to this peninsula and its beauty, and I just didn't want this to go by without acknowledging that it's important enough to maintain Thank you.
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RYAN BETTEZ - CORCORAN JENNISON MANAGEMENT - SB 2557 - I want to kind of just echo a little bit of what Miles just spoke about. I've had the fortunate, to be working at Harbor Point since 1993 for CMJ Management. Harbor Point is a great community. I've loved working538 there. I love being with CMJ, and I love the residents at Harbor Point. I just542 want to echo what Miles said. I want to make sure we continue to have access to the beautiful waterfront and all the exciting stuff that's happening with the cleaning up of the bay over the last, you know, many, many years, Carson Beach is one of the555 cleanest, cities, urban beaches. So I just want to echo what Miles was saying that we want to make sure we maintain access. So thank you.
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HEIDI FALLON - HARBOR POINT - SB 2557 - So I am the current property manager at Harbor Point. I've been here 18 years, and I'm also echoing Miles and Ryan in the importance of, the DCR still controlling access and having, anybody have access to that roadway.

CABRAL - Okay. Would you like to share why DCR should maintain those roles and the access

FALLON - We have about we have three to four thousand residents here. The boardwalk is a huge asset to us. They use it all the time. A ton of residents ride the bikes down there. They walk their dogs. They go over to Carson Beach. They use the beach. I just feel that as somebody who, Commutes along, Mount Vernon Street and Morrissey Boulevard. That is important that we have access as well to the roadway over there.
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CABRAL - So really is the ability public access? Right? In that area?

FALLON - Exactly.
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MICHAEL COCHRAN - CORCORAN JENNISON COMPANIES - SB 2557 - Good morning. My name is Michael Cochran. I'm with Corcoran Jennison Companies, who has been mentioned as the developer of Harbor Point Apartments, the conversion from Columbia Point Apartments. In addition to that, our offices have been, on this peninsula since 1993. We've developed a hotel on this peninsula. We've developed, over 1,700 apartments there. We're really, the only private developer, that has been in this for this long. Most other areas are institutional owners, and, we appreciate, senator Collins putting1033 this on to provide continued access, which we've enjoyed for the past four decades over that DCR Road.

We do have concerns about this, but this really shouldn't be controversial providing everybody access right now, as the Bill stands, there's one designated person kind of controlling that access, which was always DCR-controlled access with easement bites for certain people. So, we just think the whole community there shouldn't be a prevail of this access. It just should be understood that everybody has access.

It's a very nice, universal amendment as we see it to the Bill, and it's very important to us, and it will be very important for all future development and to, not have to go through one, a designated provider of that access. You know, it should be it's a public area. The whole development that wants, to control that access is still, there's a very public development. Welcome to everyone. So we just don't understand why the language needs to specifically state the controller of this access rather than the general public who's on that peninsula and has been for decades.
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ORLANDO PARILLA - CONCERNED CITIZEN - SB 2557 - Honourable members of the committee, first of all, thank you so much for allowing us to express our profound support to, Senator Collins Bill. I am the chairman of the Harvard Community Task Force. I'm a war veteran. I'm a member of the United States Air Force. I have traveled the world extensively, and I've seen, you know, in many other countries how certain powers they abuse. In this case, I have been, also a resident of Harbor Point, you know, for close to 25 years. I have never seen, you know, something that, an entity wants to take control of something It has a particular, access point that the residents of Harbor Point, 3,400 on average that we talk about, they I have used, you know, for decades.

Now, an entity wants to say, I want to take full control of that. That is number one, disrespectful to a community like Harbor Point as you may know, it was one of the most infamous, housing developments in in in in the country to become one of the model, places in the United States as a mixed-income. Now we have the UMass Building Authority saying, you know, we're going to take, control of public access. This is public land. It's unacceptable that something like this takes place. This is the United States of America. This is not a third-world country. So we immensely support, Senator Collins on this Bill.

I hope, you know, that we will continue enjoying access to this point. Extremely important to us for so many reasons. We have residents out of 1,289 units, we have $400 subsidized. That point of entrance, you know, and access for us is extremely important and would be detrimental to all of us if this is taken away. Unacceptable. Again, immensely support, Senator Collins on this Bill. I thank you on behalf of the 3,400 residents of Harbor Point. I have some from my board that are going to talk to you. Again, thank you so much for, contemplating, you know, this Bill and passing forward. Thank you so much.
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DANIELLE TAVAREZ - CONCERNED CITIZEN - SB 2557 - My name is Danielle Tavarez. I'm one of the residents of Harbour Point. I'm here to please ask you to let us get access because that's public access and it's just that I have a special need to send it. Most of the time, buzz doesn't show up. I'm very
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TAVAREZ - Yes. We've totally, felt discriminated against. Why do you want to take the only thing that's not good for you know, just not for me, for basically everybody in Harbor Point? That is the community or even walking, it's he's assessed. It's very important for us. Please do not allow UMass to take that.
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TAVAREZ- And that's where we take our kids to the beach. That's the roadway we take basically to catch a bus, to meet friends.

CABRAL - Okay. We hear you loud and clear. Thank you very much for your testimony. Don't be nervous. We appreciate you coming in person and, letting the committee know, your feelings, how how important that access is for you and all the other residents. We understand that.

TAVAREZ - Thank you.
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CABRAL - Thank you very much for your testimony. I want to thank Representative Garcia for translating or interpreting immediately and simultaneously to Senator Lovely. Senator Lovely as you know, or you might not know, but she has Portuguese background. She has visited the Azores several times, you see. You never know. Sometimes the name doesn't tell you everything. Right?
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VICTOR FERNANDES - TEAM NOAH FOUNDATION - HB 4240 - Thank you. Good morning. I'd like to thank everyone for taking the time, to put the time on this Bill. I also like, thank especially, Representative Tony Cabral for putting all of his hard work into putting this Bill together and and name of my little man, Noah. This is amazing, and I can't thank you all enough for honoring our son, Noel Fernandez, with this wonderful gesture in our greatest state of Massachusetts. I'd like to share a little bit of my experience as a special needs parent for 10 years of Noah's life with this terrible disease. Noah was diagnosed when he was five years old at his first soccer game and last. Or he was flown to Children's Hospital and spent his next two weeks to figure out what really happened and why he lost his vision temporarily.

I will never forget the words of the doctor that I first saw in the ICU when he said, I do know for sure, but I believe this is a mitochondrial disorder. Unfortunately, a few days later, It was confirmed by a spinal fluid biopsy. We didn't know what to do, what all the men knew of. We went to many different places all over the world and sought, to speak to doctors and hospitals. We even tried stem cell research clinics. It seemed unreal what was happening, but it was a brutal reality that hit us very hard and we couldn't understand why this was happening to a five-year-old boy. Thanks to the community, our friends, Shore Center, and especially our families, gave Noah a comfortable but short 10 years of his life.

Gilles Hospital was Noah's home for a very long period. Unfortunately, we spend a lot of time together there. What an amazing place that is. We're very lucky to1862 have such incredible family and friends1864 and support our1866 little Noah for all those years,1868 especially a wonderful angel who came into our life at that time, Josephina. It was hard to see our little boy decline day by day and see him stop walking, stop talking, stop eating, and slowly see his organs stop working one by one to the last day of his life. We're very blessed with our little boy Noah. He taught me so much in my life. Even one who wasn't seeing anymore talking or anything like that and a lot of sleepless nights at Children's Hospital.

We're very blessed that we could pay for making all kinds of changes in our home, transportation, doctors, hospitals, and specialist equipment that we might need. Unfortunately, in the community, there are a lot of families that don't have these chances that we had and are blessed as we were. This is the reason why i started Team Noah Foundation, where we can renovate homes, build ramps, and buy we have bought a bunch of vans for families, specialized equipment, bikes, and build a beautiful home in our community with two other organizations. I can't thank you all, enough, for making this. Again, thank you, Tony. This really is an honor, to see you guys do this. Thank you so much.

CABRAL - Thank you, Victor, for1970 your testimony. Any comments or questions from the committee? Thank you. I think your testimony tells it all, how important this is to you and to the community of Greater New Bedford in particular, Southeast Mass or South Coast. The work that you have done, with Team Noah Foundation, has been an example to many, many folks in many other organizations on the South Coast. You have provided fans to families. You have retrofitted homes. You have created a park, in New Bedford itself, for kids with disabilities, so they can go to the park and play just like anybody else. All that work that you have done, along with your team, team Noah has been fantastic. I think, Noah Fernandez, your son, is looking down and saying great job.

FERNANDES - Thank you. I would like to add to all the all the wonderful community, Team Noah, and all the friends and family who have been helping. I mean, this playground is top seven in the country. Special needs of its kind. So it's amazing to see these special needs families go out there and have a wonderful amazing time. It's amazing just to go by and see where the whole family can get together and spend some time together. Thank you so much.
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CHRISTINE FERNANDES - TEAM NOAH FOUNDATION - HB 4240 - Oh, thank you so much, Representative Cabral, this is just beyond what we could ever imagine. Since Victor mentioned, you know, about Noah and Team Noah, and since this Bill has the mitochondrial disease aspect linked to it, I wanted to take a moment to kind of educate a little bit of, you know, of what mitochondrial disease is. So, I have something written down. I apologize. Noah suffered from Milas, which is the most popular form of mitochondrial disease for nine years. All doctors can do for the child is treat the symptoms. Nothing to stop, the core illness at all. The treatment was sometimes worse than the disease itself. We need a cure and maybe our Noah can bring the awareness that lots of families and there are lots of illnesses that are now linked to mitochondrial disease that people never realized.

Which is Lou Gehrig's disease, Parkinson's disease, diabetes, lupus, Alzheimer's, ADHD, bipolar disorders, and Tourette syndrome. There's and migraines, linked to mitochondrial disease. All of these, you know, all of these things that are just, you know, So devastating. Another thing is that mitochondrial disease is classified as an orphan disease. Meaning, it affects fewer than 200,000 people in the United States. That's a lot of people, but it's not enough to get resources and money,2235 for funding for, you know, the drugs and, you know, further research on it, which is a shame. But when we move mitochondrial disease to all these other illnesses I just told you about, it affects 25,000,000 people.

So that would be incredible if they could all see that and allot that money and push it towards the root cause, which is mitochondrial disease is the root for all of these other illnesses. If they could work together on that collectively, they could save 25,000,000 American lives just in the United States every year. So, I guess I can end this by thanking Noah for those nine years that, he's suffered with. We couldn't ask anything more of him. He took enough. He took more than his, maybe from where he is, he can help us, help others. So I thank you so much, you know, for bringing this, to the floor. This is amazing. I thank you.
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VERA VADEBONCOEUR - TEAM NOAH FOUNDATION - HB 4240 - Hi. Good morning, everybody. My name is Vera Vadeboncoeur . I am a board member of the Team Noah Foundation. I'm also Noah's aunt. Victor and Christine absolutely touched up on a lot of the stuff and certainly Absolutely, support this Bill, and thank you to you and the committee for hearing us out. This is incredible. You know, just to touch up a little bit on the Team Noah again. I have written our mission and what it's, and what it does, and truly it's just to make a difference in, families with special needs enhance a little bit of their environment and improve their quality of life. We, you know what? That's that's really a big project was the playground which you touched base and you guys talked about. I'm so proud of it. Also, there are a few things that the Team Noah Foundation does. We, just it was the, you know, handicap-accessible vans.

We do the wheelchairs. We do the ramps, rebuild, you know, a few bathrooms, little things like that, just to improve a little bit of those families and their special needs and, you know, a little bit helps, of course. This myoclonic disease can't there's no cure because truly is every child, every family There are kids that are living with it that they know they have it. And, the ones they do and they know about it, it's some of them are really hard. Christine certainly did an amazing job of talking about it. This is, you know, it's tough it's a really tough of disease, and we thank you for bringing this to light. We thank you very much for bringing this Bill, and it certainly will be a special day if this passes, I know we have to pass the Senate and the governor has to sign it, but this is incredible to even just bring it up. So thank you, and thank you to all the board members for, hearing this out.

CABRAL - Thank you, Vera, for your testimony. Obviously, the Team Noah Foundation has done2482 wonderful work, and I know you're going to continue doing that. You are a big part of the, Team Noah Foundation.2490 So we appreciate the work. I mean, those of us in our

VADEBONCOEUR - Thank you.

CABRAL - Part of the state, appreciate very much all the work that you do and the foundation does.

CABRAL - Thank you.

VADEBONCOEUR - It certainly takes a team. It's just not me or it takes a team, and we have some incredible voluntary, committee members that, we do that we all work really hard and voluntary again. It really truly does take a team. It's just not me. Thank you.
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CONNIE ROCHA-MIMOSO - TEAM NOAH FOUNDATION - HB 4240 - Good morning, everybody. Thank you for having us. My name is Connie Rocha-Mimoso. I'm part of the committee of Team Noah Foundation. I just want to echo everything that everybody said, but I really want to focus on Noah has mobilized this community to look at disability and its disabilities in a different way. Many of the individuals who attend our functions and know of Noah's story, never met Noah. I was fortunate enough to, and have, oh, sorry. A special bond that ties me to him. However, he has gone beyond that. It's mobilizing this community to eliminate barriers for children and families with disabilities. Anytime you go to the park,2593 one of the highlights is the statue of Noah. Every kid wants to be there to take a picture with Noah.

He has inspired our community to have hope, families too, you know, seek help. Children who have lived with children with a disability be more, accepting of that disability, be kinder, and accept in the community that it is okay to have a disability. Noah has gone beyond even though he's not here, but his story and his courage fighting this for 10 years have given our community the hope to continue to advocate for awareness, to advocate for families that have no resources, and also advocate for them to have a voice. All of these people, including the young children who go to the park, are Noah's voice. Not just the committee, but they are. They look forward to being in Noah's presence. So I am so happy that we're taking this on and like Vera said, it still has to go through the process.

But I could imagine us continuing with this Bill and even making bigger things nationwide to bring awareness. We're so fortunate in the southeast that we continue to do this, but, this is humble for our community to be acknowledged and to possibly have a day that we can acknowledge the man the little boy who brought us all together because that's what this was all about is a little boy who bought this community together and continues to bring it. So I want to thank the committee. Representative Cabral, I want to thank you, and all the hard work that our committee does is relief from our hearts and not just in honor of Noah, but in honor of every child that has this disease. So thank you so much for listening to us today.
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SEN COLLINS - SB 2557 - Thank you, Chair Cabral, and members of the committee, for putting this Bill on today's agenda. As you heard from some of my, constituents, residents, and businesses of Columbia Point, I want to thank them for their testimony. Multilingual. That was on the Teams. Yes, I was able to listen to that.
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COLLINS - I like the points you made about, the Latin base and why it's an important part of language access as we've discussed some other Bills in the past and why that's important. A language access Bill that's moved out of this committee, with your support. But the a need, to pass this legislation and to, remove the ambiguity, around access on this DCR road. Just a bit of background, last session, this committee and this legislature, provided, through legislation, and granted an easement to the UMass Building Authority, 99 years, for nonexclusive use. So that's in writing. Though it is spelled out that way is nonexclusive. The UMass Building Authority is attempting to interpret that language as if they have primary, and others who seek to get access must go through them for approval, for a road they don't own.

That's the DCI road, for access, and that's wrong. So what this Bill, S 2557 would do is, again, remove any doubt, that this access is nonexclusive, and then everybody in Columbia Point can continue to maintain unfettered access. It's also an environmental issue2938 here and didn't, and it was described based on the movements and the uses in personal terms, but just to paint a picture, I'm going to provide a map of the peninsula for the committee through the chair so folks can take a look at this. But if they lost access and this is an environmental justice community, Columbia Point. I know that Orlando brought up some of the history in, summary, but as an environmental justice community, if they lost access, in order to get into the peninsula, you'd have one road.

A road that is taken by almost all of the UMass Boston students and professionals. There were 10,000 people on campus, roughly. So one access road that would take everybody to thousands of residents to the Columbia Point community as well as the UMass Boston campus, and that will bear all of, the burden on the community. Skyrocketing congestion and the carbon impacts that come along with that. So preventing this is it could be a safety issue as well given, access. There's a state police barracks there, But access for, inventory and other, critical response services, you know, needs to get the approval of the UMass Building Authority.

It's so the environmental issue is critical here as well along with the safety issue to remain for equal access. So as I said, I will share a map, and I really believe that this is important legislation to have the committee view favorably and hopefully can pass before the end of the session. As I said, in good faith, this legislature and the committee moved legislation forward to provide access to the US Bureau Authority. What did that mean? That meant that they could have a $230,000,000 project that otherwise wouldn't have any value at all.

So, you know, the growth must continue to happen, jobs, economic development, and that's why this committee, I believe, in legislature supported that, nonexclusive. Otherwise, you know,3061 the financial outfits would have said, no. You don't have access to3065 this because their easement was running out. So while that's important, this is also important. It wasn't done for one and not the other. You know? So I think this legislation would remove that ambiguity and ensure that everybody has equal access and, that's really important.3080 So thank you very much for hearing this today and I ask that it gets reported in favor
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