13:10:35 (recording in 13:10:35 progress). 13:11:46 >> Commission on the 13:11:47 Status of Persons with 13:11:49 Disabilities. We have an 13:11:52 incredible, wonderful showing, 13:11:54 and presently -- and just a few 13:11:55 minutes delay because we're 13:11:57 waiting for additional panelists 13:11:59 so the people on Zoom can also 13:12:00 see and hear everyone. So 13:12:04 continue to talk amongst 13:12:07 yourselves and I'll let you know 13:12:09 when we're at the real start. 13:12:09 Okay. 13:12:11 >> Can we have a 13:12:12 confirmation from someone online 13:12:15 if you can hear us now? 13:12:24 >> Yes. 13:15:50 >> 13:15:51 >> 13:17:09 >> Hi, good afternoon, 13:17:13 everybody. My name is Lindsey 13:17:14 and I am the state 13:17:19 representative 13:17:21 here but most importantly I'm 13:17:22 also a member of the commission. 13:17:24 And it is my honor to welcome 13:17:27 you here to Northampton for the 13:17:28 meeting. Thank you, all of you, 13:17:30 for taking time to participate 13:17:32 in this important conversation. 13:17:34 It is really, truly wonderful to 13:17:36 see so many members of the 13:17:40 community, advocates, service 13:17:42 providers, gathered here today 13:17:44 with a shared commitment to 13:17:46 build a Commonwealth where every 13:17:48 person has opportunity to 13:17:51 thrive. I want to take a moment 13:17:53 to welcome senator [inaudible] 13:17:54 -- 13:17:54 [ Applause ] 13:17:58 -- who has joined us. 13:18:03 . 13:18:06 We will be spending a 13:18:09 lot of time discussing policies 13:18:12 and programs, and those are all 13:18:13 really important. But the 13:18:15 reality is that the most 13:18:16 effective policy doesn't begin 13:18:17 at the state house. It begins 13:18:20 in rooms like this on listening. 13:18:22 That's why this event matters 13:18:26 so very much. Decisions about 13:18:28 disability services and 13:18:29 accessibility are made without 13:18:31 wholly centering the people who 13:18:34 are most impacted. If we truly 13:18:37 want to create communities where 13:18:38 everyone can participate fully 13:18:39 we have to make sure that those 13:18:41 voices aren't just included but 13:18:42 are leading the conversation and 13:18:44 that's what we hope to do here 13:18:44 today. 13:18:46 No one understands the 13:18:47 barriers that exist better than 13:18:50 the people who navigate them, 13:18:52 whether those barriers involve 13:18:54 housing, transportation, 13:18:55 employment, healthcare, lived 13:18:59 experience provides insights 13:19:01 that no report or data can ever. 13:19:03 Listening to these residents we 13:19:04 are going to gain clearer 13:19:06 understanding of what is 13:19:07 working, what isn't working, and 13:19:09 where we need to be better. 13:19:11 We're better quipped 13:19:15 to invest in services that 13:19:15 actually meet peoples' needs 13:19:20 this way that respect 13:19:21 independence of every 13:19:22 individual. So if you are here 13:19:23 today, whether you have signed 13:19:28 up to speak or you're going to 13:19:30 submit written testimony don't 13:19:32 view this is a one time 13:19:34 occasion. Continue to speak up, 13:19:36 ask questions, share your 13:19:37 experience and connect with one 13:19:38 another. Every conversation 13:19:38 matters. 13:19:40 I do want to offer 13:19:43 some thanks today, and I'd like 13:19:47 to start with the Executive 13:19:50 Director of the commission. 13:19:52 [ Applause ] 13:19:56 I think he spent more 13:19:59 time running around today so if 13:20:01 you haven't had an opportunity 13:20:02 to talk with her, make sure you 13:20:03 do. She is an incredible person 13:20:04 who has done so much work to 13:20:06 make sure that today has gone 13:20:07 off smoothly. 13:20:10 Of course I want to 13:20:13 thank MassAbility, who have done 13:20:17 a huge amount to pull this 13:20:17 together. 13:20:21 [ Applause ] 13:20:25 The Northampton senior 13:20:26 center, providing a director for 13:20:28 traffic so everybody could get 13:20:32 here today. Northampton media 13:20:34 has gone above and beyond to fix 13:20:36 technical issues including a 13:20:38 last minute run over to their 13:20:40 offices to pick up some piece of 13:20:42 equipment that I can't name. So 13:20:44 I appreciate that they have 13:20:45 really tried to make sure that 13:20:46 everything works. 13:20:52 The Cafe -- 13:20:53 if you haven't gotten a snack, 13:20:54 please do. 13:20:54 [ Applause ] 13:20:56 If you live here, you 13:20:58 know their food is awesome. If 13:21:00 you are visiting from another 13:21:03 part of the state, you in for a 13:21:03 treat. 13:21:04 I also want to take a 13:21:08 moment to recognize 13:21:15 [inaudible]. They are on the 13:21:19 commission advisee 13:21:21 council. I could keep going on 13:21:23 but we want to hear from other 13:21:26 people but just know I am 13:21:28 incredibly grateful to all the 13:21:29 partners who made this 13:21:29 possible. 13:21:30 Now I have the very, 13:21:32 very special privilege of 13:21:35 introducing the chair of the 13:21:35 Commission on the Status of 13:21:38 Persons with Disabilities, a 13:21:40 former colleague and dear friend 13:21:42 and mentor. And I am so 13:21:44 grateful you are here today and 13:21:44 look forward to passing this 13:21:50 over. Thank you. 13:21:53 >> So thank you to 13:21:56 everyone, and a special note of 13:22:00 appreciation representatives who 13:22:01 is a Commissioner as well as 13:22:03 being a state representative who 13:22:05 has been the person who helped 13:22:07 us make all of the arrangements 13:22:08 to host this day. This is the 13:22:11 third of our fourth series in 13:22:14 which we have visited metro 13:22:16 west, Boston, Lowell area. 13:22:20 Today with all of you, western 13:22:22 Mass., and hopefully our fourth 13:22:24 and final session will be on the 13:22:30 south shore. 13:22:51 We have many people 13:22:53 listening virtually. We are 13:22:55 grateful and want to express our 13:22:59 appreciation to our ASL 13:23:01 interpreters, Laura and Mary, 13:23:05 our CART provider, Debbie Knapp, 13:23:08 and our ASL interpreters 13:23:10 Christine and Tracy. 13:23:13 We are hoping in a way 13:23:14 we present our meetings that 13:23:17 this is the way all public 13:23:21 meetings should be held in our 13:23:26 Commonwealth. 13:23:29 Every individual with 13:23:33 a disability has a right to all 13:23:34 information being shared in the 13:23:37 Commonwealth. We are pleased to 13:23:42 be joined by Commissioner Wolf 13:23:45 and also we will hear from 13:23:49 Commissioner Sotonwa, and a 13:23:53 project director 13:23:56 . 13:23:57 >> These are 13:23:59 presentations that we are trying 13:24:01 to fashion, I thank you for your 13:24:03 patience that we were delayed 13:24:04 starting this meeting. We are 13:24:06 only trying to do a portion of 13:24:08 the meeting for these people 13:24:12 that are going to speak to you, 13:24:13 because the real reason we are 13:24:16 here is for you. And I want you 13:24:19 to know that the members who are 13:24:24 here from our executive board, 13:24:28 Christopher, and the vice chair 13:24:30 commission is here. Another 13:24:32 hero, if you want to know the 13:24:34 truth, is the treasurer and 13:24:36 member of the executive board 13:24:38 and Carl Richardson who is the 13:24:40 secretary is here with us 13:24:43 virtually. I want to thank them 13:24:46 and welcome them on their road 13:24:47 out to Northampton as well. The 13:24:52 Northampton senior services 13:24:57 services have really helped. 13:24:59 It's hard when you are arriving 13:25:00 to know how much work has been 13:25:03 done to hopefully make this an 13:25:05 accessible and pleasurable event 13:25:07 for all of us. I want you to 13:25:09 know that more than a hundred 13:25:11 people registered for this 13:25:16 meeting today. I'm sure you're 13:25:16 doing community 13:25:18 events and not seeing large 13:25:20 crowds so a hundred people 13:25:21 registering for this is quite 13:25:23 stunning and speaks to the need. 13:25:26 More than 20 people have the 13:25:29 courage to have their voice 13:25:31 heard and have volunteered to 13:25:35 speak on their concerns. These 13:25:37 are not scripted by us in any 13:25:39 way, and they are the people 13:25:42 that I'm hoping we all learn 13:25:44 from today. We had more than 30 13:25:45 organizations that wanted to be 13:25:47 part of the resources here. In 13:25:49 fact, we had to close the 13:25:51 resources just for virtual 13:25:52 space. So to see that many 13:25:57 people in this geographic area 13:25:58 who service people with 13:25:59 disabilities and want to share 13:26:02 that is very important as well. 13:26:04 At this time, I'm 13:26:07 going to turn this over to 13:26:10 Commissioner Toni Wolf who is 13:26:12 going to share a little bit 13:26:14 about -- we're never giving her 13:26:18 enough time -- Commissioner 13:26:18 Wolf? 13:26:22 >> Thank you. 13:26:24 >> Hello. We really 13:26:26 do want to thank you for showing 13:26:28 up today. I'm really excited to 13:26:32 be here. For those that do not 13:26:36 know, MassAbility was called 13:26:37 before Massachusetts 13:26:38 rehabilitation commission. Some 13:26:40 of you might have called us MRC. 13:26:42 So now you know who MassAbility 13:26:43 is. Okay? 13:26:45 What's more important 13:26:49 is what we do. We are here to 13:26:51 support people in all ways of 13:26:53 their lives, whether it's 13:26:54 employment, whether it's 13:26:56 careers, whether it's supporting 13:26:58 people in training. Supporting 13:27:01 people in perhaps their own 13:27:05 businesses, independent living, 13:27:06 assistive technology. Those are 13:27:08 all the things that MassAbility 13:27:12 does. We are a large agency, a 13:27:14 statewide agency. I'm really 13:27:16 proud to say we have offices in 13:27:19 greenfield, Pittsfield, and I 13:27:21 know springfield is not 13:27:23 considered the west, but 13:27:24 springfield is included. So, 13:27:26 please, I think it's really 13:27:33 critical to know why I wanted 13:27:35 to be here is often we here the 13:27:37 west is not heard. So I want 13:27:41 you to know that people at this 13:27:42 table know that you exist. All 13:27:46 right? Maybe my office is in 13:27:47 Boston, but nevertheless it is a 13:27:50 statewide agency and we want to 13:27:51 make sure we hear from you no 13:27:52 matter how far you are in the 13:27:53 west. All right? 13:27:55 I also want to say 13:27:56 something about our partnership. 13:27:58 We are a state agency. We are 13:28:03 one of many. 13:28:05 You also see resources around 13:28:07 the room. This is a fabric of 13:28:08 all our services. I encourage 13:28:10 you to not only get to know 13:28:12 MassAbility, but also take a 13:28:13 moment to walk around and see 13:28:17 the resources. We often fund 13:28:19 them and they provide services 13:28:22 for us and vice versa. And we 13:28:23 partner with developmental 13:28:25 disability services so it's 13:28:26 really truly a partnership and 13:28:27 we're very excited to be here 13:28:28 today. 13:28:30 I do have to have one 13:28:31 commercial. All right? You 13:28:34 ready? All right. Come on, 13:28:37 drum roll. For the first time, 13:28:40 we're doing a photo visit. 13:28:43 We're asking you to submit a 13:28:46 photo. We're doing a photo 13:28:50 contest -- I know, right? Fun! 13:28:52 Fun! Fun! Right? State agencies 13:28:54 can be cool. Let me just say! 13:28:56 We want to do a photo contest. 13:28:58 We want to make sure that we use 13:29:02 it for social media, for using 13:29:03 it at the state house. We want 13:29:05 to make sure that people with 13:29:08 disabilities are visible. And 13:29:10 in these times with our federal 13:29:14 landscape, it's critical 13:29:18 that you have a voice and 13:29:20 you're visible. Please find oit 13:29:22 more about our contest. There 13:29:23 will be prizes, but nevertheless 13:29:25 just more about making sure 13:29:27 you're visible. Thank you so 13:29:28 much for allowing us to be here. 13:29:29 We're really excited to partner 13:29:34 with the commission. 13:29:41 >> Thank you. I'm 13:29:43 going to turn virtually so we 13:29:46 can hear from Dr. Soig, the 13:29:51 -- 13:29:55 Dr. 13:30:00 Sotonwa, Commissioner of the 13:30:01 Mass. Commission for the Deaf 13:30:01 and Hard of Hearing. 13:30:02 >> Thank you, 13:30:03 everyone. It is a pleasure to 13:30:05 be here with all of you. Our 13:30:07 communities are best served when 13:30:11 government doesn't work in 13:30:13 silos. Every agency has a 13:30:15 unique role to play. But our 13:30:17 greatest impact comes from 13:30:22 working together. MCDHH is 13:30:25 proud to stand along side our 13:30:27 partners at meeting the moment 13:30:30 as we strengthen collaboration, 13:30:33 strengthen, expand access, and 13:30:37 ensure that every resident, 13:30:40 including Deaf, hard of hearing 13:30:43 and Deaf/blind individuals can 13:30:45 fully participate in and benefit 13:30:47 from the services they deserve. 13:30:50 That belief is at the 13:30:53 heart of MCDHH's work every 13:30:58 single day. MCDHH was 13:30:59 established more than 40 years 13:31:02 ago as the Commonwealth's lead 13:31:05 agency serving Deaf, hard of 13:31:07 hearing and late Deafened 13:31:09 residents. Today, with nearly 13:31:12 60 dedicated staff across 5 13:31:16 regional offices, we continue to 13:31:18 work every day to remove 13:31:21 barriers and expand 13:31:22 opportunities throughout 13:31:23 Massachusetts. 13:31:29 Our work spans many 13:31:32 areas. Through our community 13:31:34 services division, we help 13:31:35 individuals and families 13:31:38 navigate education, employment, 13:31:40 healthcare, housing, and other 13:31:42 life challenges. 13:31:45 Last year, our team 13:31:48 served more than 2300 clients 13:31:52 and provided over 4,000 hours of 13:31:54 advocacy. All made possible 13:31:57 through strong partnerships with 13:32:02 agencies like DCF, 13:32:05 DDS, DMH and many community 13:32:05 organizations. 13:32:09 Our communication 13:32:12 access services division 13:32:13 coordinates interpreters and 13:32:15 CART services, supports 13:32:16 workforce development, and 13:32:17 expands communication access 13:32:19 across the Commonwealth. 13:32:22 Last year, we managed 13:32:25 more than 25,000 communication 13:32:27 access requests while continuing 13:32:30 to strengthen the interpreter 13:32:30 workforce. 13:32:35 Through our 13:32:36 communication access training 13:32:37 and technology services 13:32:39 division, we provide training 13:32:43 and technical assistance to 13:32:45 hospitals, law enforcement, 13:32:48 emergency responders, state 13:32:51 agencies, and community 13:32:55 partners. Last year alone, we 13:32:57 delivered more than 24,000 13:32:59 trainings and continue produces 13:33:01 accessible ASL resources for 13:33:03 communities across 13:33:03 Massachusetts. 13:33:08 What connects all of 13:33:13 these efforts is partnership. 13:33:14 Accessibility is not something 13:33:16 that one agency can achieve 13:33:20 alone. It takes all of us 13:33:23 working together, sharing 13:33:24 knowledge, listening to one 13:33:28 another, and designing service 13:33:30 was that meet people where they 13:33:33 are. That is exactly why events 13:33:36 like meeting the moment are so 13:33:41 valuable. They remind us that 13:33:43 collaboration isn't just a nice 13:33:46 idea. It's how better 13:33:48 government happens. 13:33:51 Before I close, I'd 13:33:53 like to recognize two wonderful 13:33:55 members of the MCDHH team who 13:33:59 are here today. Holly 13:34:03 Pearson and Emily Harrison. 13:34:05 They will be at our exhibit 13:34:07 booth throughout the event, and 13:34:11 I encourage you to stop by, 13:34:15 introduce yourself, ask 13:34:17 questions, explore how MCDHH can 13:34:18 support your organization and 13:34:21 the communities you serve. 13:34:24 Whether you're looking for 13:34:26 communication access resources 13:34:28 or training, or technical 13:34:31 assistance, or opportunities to 13:34:32 partner, Holly and Emily would 13:34:35 love to connect with you. 13:34:36 Thank you to the 13:34:38 organizations for bringing us 13:34:39 together, and thank you to all 13:34:43 of you for the work you do every 13:34:48 day on behalf of the people of 13:34:49 Massachusetts. I look forward 13:34:49 to learning from you, 13:34:51 collaborating with you, and 13:34:54 continuing this important work 13:34:55 together. Thank you. 13:34:57 [ Applause ] 13:35:05 Thank you, 13:35:07 Commissioner Sotonwa. We will 13:35:08 now here from the project 13:35:12 Director of the Mass. rural 13:35:14 health transformation program at 13:35:16 the executive offices. 13:35:18 >> Thank you all for 13:35:19 inviting me to be here as a 13:35:23 proud resident of Hampshire 13:35:27 county and actually of the hill 13:35:29 towns. Sorry, I'm being asked 13:35:33 to start my video. 13:35:38 I'm going to be brief. 13:35:40 I have a specific program, a 13:35:42 new opportunity here in the 13:35:43 state. I have lots of 13:35:45 information. I'm going to go 13:35:47 through them quickly but I'm 13:35:49 assured they will be shared with 13:35:52 everybody. You'll get a chance 13:35:53 to see them later. 13:35:55 So just, um, why is 13:35:59 this not working? Sorry. 13:36:03 There we go. And I 13:36:04 can't see my own screen. 13:36:05 Technology! 13:36:06 Okay. I have to start 13:36:08 by saying that this presentation 13:36:10 is supported by the centers for 13:36:11 Medicare and Medicaid services 13:36:13 of the U.S. development of 13:36:14 health and human services. It 13:36:19 is part of a finances. It has 13:36:23 received 13:36:27 162,005,238. 13. A hundred% 13:36:30 of this program is funded by CMS 13:36:31 and the contents of this 13:36:33 presentation are mine and don't 13:36:34 necessarily represent the views 13:36:37 of CMS or the U.S. government. 13:36:38 Get that out of the way. 13:36:40 So the rural health 13:36:41 transformation program. Last 13:36:44 year HR one was tasked by 13:36:48 Congress, and a piece of it was 13:36:50 $50 billion for rural health 13:36:52 transformation across the 13:36:53 country. Massachusetts applied 13:36:56 for this program, which is 13:36:58 focused on improving healthcare 13:37:01 access, quality and outcomes, by 13:37:03 transforming the healthcare 13:37:04 ecosystem in rural communities 13:37:05 around the country. We are 13:37:09 focused on promoting innovation, 13:37:10 strategic partnerships and 13:37:14 workforce investment. We found 13:37:16 out the end of last year that we 13:37:17 received an award for the first 13:37:19 year of this program -- it is 13:37:21 five years -- for the first year 13:37:24 of the $162 million. The future 13:37:28 years will be determined by CMS 13:37:28 annually. 13:37:30 So, quickly, just I 13:37:32 think out here we have a pretty 13:37:34 good sense of what rural is but 13:37:36 just so you can see. The 13:37:39 Department of public health 13:37:40 defined rural in 2022 as the 13:37:45 communities in this map in blue. 13:37:46 A level 2 generally means there 13:37:50 is more isolation, more 13:37:53 difficulty in accessing 13:37:58 providers, and distance from 13:37:59 urban centers. As you'll see 13:38:02 that does lead to core health 13:38:04 outcomes in rural level 2. 13:38:05 We also have 13:38:08 something, I'll note for those 13:38:10 of you who like data, are rural 13:38:11 plussers. As we know county 13:38:14 level data is often not a good 13:38:15 representation for smaller 13:38:18 communities nor is municipal 13:38:21 level data so Department of 13:38:23 public health created clusters 13:38:26 of towns that share common 13:38:31 demographics, etc., so I'll be 13:38:33 referring to those. But it is 13:38:35 160 communities and 10% of the 13:38:37 state population are around 13:38:38 700,000 people. 13:38:41 Here is some of the -- 13:38:43 briefly -- health indicator. As 13:38:45 you can see, non-rural 13:38:47 communities often tend to be 13:38:48 healthier or have lower numbers 13:38:51 in terms of heart disease, 13:38:53 hypertension, diabetes and 13:38:54 tobacco use. If you look at 13:38:59 specific regions like the north 13:39:04 Quabbin, Quaboag and outer 13:39:08 cape, hypertension is 20% for 13:39:11 non-rural qualities and 43% for 13:39:14 rural so dramatically worse 13:39:15 health outcomes in those areas. 13:39:17 So that is why we're doing this 13:39:18 and why we're very excited about 13:39:19 this opportunity. 13:39:21 As I mentioned a 13:39:23 number of times, collaboration 13:39:26 is critical in any effort to 13:39:27 improve peoples' health and well 13:39:29 being. So we are not just 13:39:31 looking at hospitals, health 13:39:33 centers, nursing facilities, but 13:39:35 really the entire ecosystem of 13:39:37 healthcare including 13:39:38 municipalities such as where we 13:39:42 are right now, EMS, 13:39:42 community-based organizations 13:39:44 like many of those sitting here, 13:39:46 social services, um, across the 13:39:49 spectrum. So we really have 13:39:51 targeted our adaptation and 13:39:53 activities on the entire 13:39:54 ecosystem. 13:39:59 Our vision is a 13:40:00 Commonwealth with thriving rural 13:40:02 communities where well being is 13:40:03 a reality for all. Our goals 13:40:05 are focused on access, on 13:40:07 creating better opportunities to 13:40:08 improve the health and well 13:40:09 being of rural residents, and 13:40:11 how are we looking at systems, 13:40:12 policies and investments to meet 13:40:15 the needs of rural communities? 13:40:17 Rural communities have been 13:40:19 underinvested in for decades, as 13:40:20 mentioned earlier in terms of 13:40:23 our isolation from Boston, the 13:40:25 policy makers, and I'm happy to 13:40:27 say that now there are more of 13:40:31 us who our offices are in Boston 13:40:33 but we don't have to live in 13:40:34 Boston. So we want to ensure 13:40:36 that we are creating lasting, 13:40:37 systemic change for rural 13:40:38 communities in Massachusetts. 13:40:41 This is one slide that 13:40:43 contains all 7 initiatives and 13:40:48 represents all 37 activities for 13:40:49 $162 million. There's much 13:40:50 more information. At the end 13:40:51 I'll give you the website if 13:40:55 people want to go to get more 13:40:57 information and we will be 13:40:58 updating it regularly. 13:41:00 Generally the 7 initiatives are 13:41:04 focused on clinical connections, 13:41:04 clinicians connecting to each 13:41:06 other, connecting to community 13:41:09 providers and connecting to 13:41:11 patients. Innovation and rural 13:41:12 care models. How are we 13:41:15 bringing services, models that 13:41:16 have been proven in other places 13:41:18 and expanding them and ensuring 13:41:20 that there is access in rural 13:41:23 communities? Training 13:41:27 healthcare. Workforce. So how 13:41:31 are we supporting local rural 13:41:33 providers to train folks who 13:41:36 live in rural communities to 13:41:37 create economic opportunities 13:41:41 and more workforce, supporting 13:41:43 rural residency programs, 13:41:47 support for field placements, 13:41:49 etc. A wide range of those 13:41:53 services. Um, how are we 13:41:55 working with rural community 13:41:56 organizations creating better 13:41:57 linkages and supports 13:41:59 with them to clinical providers. 13:42:01 How are we supporting EMS? Do 13:42:04 we not just transport in a 13:42:05 community but actually an 13:42:07 integral part -- we know they 13:42:09 are -- support their role as 13:42:10 integral part in the healthcare 13:42:13 system. So paramedicine and 13:42:14 supporting services they do that 13:42:16 they don't get reimbursed for. 13:42:19 Technology. How are we 13:42:20 providing cyber security 13:42:23 supports, and rural providers 13:42:25 connected in healthcare systems. 13:42:29 And use capital moneys for 13:42:30 primary care providers and 13:42:33 nursing facilities to address 13:42:34 issues potentially for a long 13:42:36 time because of their being 13:42:37 small and harder to get 13:42:37 financing, etc. 13:42:39 I want to address 13:42:40 specifically which pieces of 13:42:41 these might be of interest in 13:42:44 particular to the disability 13:42:46 community. So things like home 13:42:48 visiting and enhanced care 13:42:49 coordination for people with 13:42:50 complex medical and social 13:42:52 needs, expanding telehealth. If 13:42:55 you're not allowed to pay for 13:42:56 anything -- to do 13:42:59 transportation, which is 13:43:01 interesting. Expanding 13:43:03 telehealth to expand access to 13:43:05 primary care, specialty care and 13:43:07 pharmacy services closer to 13:43:09 home. A specific program called 13:43:13 My Care, but if you're reading 13:43:17 the application, it's called 13:43:18 RISE. Massachusetts news care 13:43:20 and how can we connect families 13:43:23 and youth with complex medical 13:43:24 and behavioral health needs into 13:43:26 the services that exist close to 13:43:27 home, and how are we 13:43:29 coordinating that system 13:43:30 better? 13:43:32 So, that is a very 13:43:34 high level. The next few slides 13:43:36 have specifically sort of 13:43:38 pulling together pieces of each 13:43:39 initiative around specific 13:43:41 issues, so workforce -- again we 13:43:43 will send these out. I know 13:43:46 we're way behind. Healthcare 13:43:47 infrastructure, and what I will 13:43:49 note is we all know that when 13:43:54 you get a five-year grant, 13:43:55 in five years sometimes those 13:43:57 services get cut off. And so 13:43:59 our entire focus of this is 13:44:00 about capacity and 13:44:01 infrastructure. We are not, 13:44:03 we're not allowed to pay for 13:44:04 services that are billable or 13:44:06 that are currently being funded. 13:44:08 So we are focused on how are we 13:44:11 creating capacity and 13:44:12 infrastructure in rural 13:44:13 communities so when they get to 13:44:15 the end of this five or six year 13:44:17 period, we'll be able to carry 13:44:19 these forward and have the 13:44:22 capacity to, to, where is that 13:44:23 sustainability? So I just 13:44:25 wanted to make that point. 13:44:29 In terms of engagement 13:44:31 we will shortly announce a 13:44:32 community advisory council. It 13:44:34 is not going to be small because 13:44:35 we wanted to make sure we're 13:44:38 representing all nine sectors of 13:44:43 rural health. EMS, residence, 13:44:46 etc., as well as geographic 13:44:47 distribution. So we represent 13:44:51 all, across the entire state. 13:44:56 That will be an neundz 13:44:58 soon. For each initiative 13:44:59 there will be a work group that 13:45:01 has representative from the 13:45:04 community in all of the active 13:45:06 implementation. We got 200 13:45:10 200 inputs into what 13:45:12 we should put into it and we 13:45:13 have sessions going forward. 13:45:15 Lastly, our timeline. 13:45:17 We will begin doing 13:45:20 procurements. All of this has 13:45:21 to go through the state's 13:45:22 procurement systems in the next 13:45:23 months because we need to have 13:45:27 all of our funds in contract, 13:45:30 $162 million by the end of 13:45:32 October. It can be spent in the 13:45:34 next year but it has to be in 13:45:35 contract, and we will find out 13:45:37 in the fall how much we'll be 13:45:38 getting for subsequent years of 13:45:39 the project. And that's it. 13:45:42 So that's the website. 13:45:45 I'm happy to answer questions. 13:45:48 [ Applause ] 13:45:49 [ Cheers and Applause] 13:45:57 >> thank you, 13:45:58 Eliza. I'm hoping already that 13:46:00 you're getting a sense what the 13:46:02 commission is, the work we can 13:46:06 do together. I wanted to say 13:46:08 it's important that we 13:46:09 understand rural health 13:46:10 initiative, because we may well 13:46:13 have to fight for it to continue 13:46:14 funding. A million dollars 13:46:17 sounds like a lot of money. 13:46:20 Doesn't translate to a lot and 13:46:22 we need to make sure we can 13:46:23 continue that work. 13:46:23 More than that, 13:46:25 remember I said I don't want to 13:46:27 tell anyone what we're doing, I 13:46:28 want to show you what we're 13:46:29 doing? So it was important that 13:46:32 we heard from these speakers. I 13:46:35 have several slides about the 13:46:37 commission, and I am going to 13:46:37 have the slides on the screen 13:46:40 but I'm not going to read them 13:46:41 to you. I'm just going to give 13:46:44 you a summary. If you could 13:46:47 bring us to the slide on our 13:46:48 purpose. 13:46:50 I like to distill this 13:46:53 down to from where our 13:46:55 commission formed our statutory 13:46:57 language that is the law, that 13:46:59 we are permanent and we have 13:47:00 funding. I'm going to put it in 13:47:02 terms of how we view it, right? 13:47:04 When we talk about the 13:47:05 disability community and we 13:47:07 bring you different voices, and 13:47:08 the voices we're going to hear 13:47:12 today, for years the disability 13:47:13 community, many members -- and 13:47:16 when we say "disability 13:47:21 community" we mean family and 13:47:25 friends, the allies who fight 13:47:28 for them, the advocates who 13:47:31 represent them. When we're 13:47:33 separated and siloed depending 13:47:37 on circumstances we're dealing 13:47:38 with. 13:47:40 I always say we've 13:47:43 been individual planets but we 13:47:46 need to be a galaxy. And when 13:47:48 we're a galaxy you're not 13:47:50 isolated. We are here 13:47:52 specifically for you. Your 13:47:53 representative has worked so 13:47:58 hard, confidence is important. 13:48:03 I met with 13:48:05 senator out in -- 20 minutes 13:48:09 from here -- [laughing] -- I'm 13:48:14 not supposed to say this -- 13:48:16 [inaudible] -- there are 29 13:48:17 members of the delegation from 13:48:19 western mass there. The data is 13:48:24 on virtually with us as the 13:48:26 [inaudible] many other 13:48:27 representatives. The work we're 13:48:28 doing here together is 13:48:29 important. 13:48:31 The second slide is 13:48:33 our mission and statutory 13:48:34 language and the work we're 13:48:38 doing to combine our interests 13:48:41 and defining working 13:48:43 collaboration. The commission 13:48:45 is still finishing our third 13:48:47 year, in our in fancy, building 13:48:50 our relationships. We want to 13:48:52 know how you want us to move 13:48:53 forward. And finally, our 13:48:55 fourth slide is on how we 13:48:57 advance our mission. The 13:48:59 commission meets quarterly but 13:49:02 we have subcommittees that are 13:49:04 the engine of the commission who 13:49:05 meet monthly. We want you to 13:49:07 know all our meetings are 13:49:09 online, all with accessibility, 13:49:12 all of our subcommittee meetings 13:49:13 are online. You can look us up 13:49:16 on the website and more 13:49:17 importantly know how to weigh in 13:49:19 with us. 13:49:22 I'm going to, at this 13:49:25 time, turn over to Chris White 13:49:28 who usually is our clean up 13:49:29 hitter but our clean up hitter 13:49:31 has to leave before the last 13:49:35 inning today 13:49:36 [inaudible]. 13:49:41 >> Thank 13:49:45 you. To be able to participate 13:49:46 and to be able to raise your 13:49:48 voice takes accessibility, 13:49:52 right? And for the commission 13:49:53 to put accessibility into 13:49:54 practice, it's thinking 13:49:55 intentionally about how people 13:49:57 participate in our work. That 13:50:00 includes providing ASL and CART 13:50:03 in our public meetings, making 13:50:04 our materials accessible, 13:50:06 working with vendors who are 13:50:08 people with disabilities or 13:50:09 organizations that employ people 13:50:11 with disabilities. These may 13:50:13 seem like individual decisions, 13:50:15 but together they reflect the 13:50:17 kind of inclusion we want to see 13:50:18 across the Commonwealth. And 13:50:21 today is another example of 13:50:22 that. Creating space where 13:50:25 people can participate, connect, 13:50:28 access information, and speak 13:50:30 directly about the issues. 13:50:31 Thank you. 13:50:35 [ Applause ] 13:50:36 >> Thank you. And now 13:50:38 at this time, I'm going to turn 13:50:41 the mic over to our Executive 13:50:44 Director who will call on people 13:50:46 who have come to share their 13:50:47 thoughts and concerns with all 13:50:50 of us. 13:50:52 >> Thank you so much. 13:50:54 Thank you all for being here in 13:50:55 person and online. This means a 13:50:59 great deal to us and our 13:51:04 partners, senior services 13:51:06 center, MassAbility, and our 13:51:07 partners. We are going to move 13:51:10 to the heart of today's event, 13:51:11 which is hearing directly from 13:51:15 all of you. So I'm going to 13:51:17 start at my far left and toggle 13:51:19 between people in person and on 13:51:21 Zoom. If you're here either in 13:51:25 person and on Zoom and did not 13:51:27 check in with myself or Sarah, 13:51:30 please let us know at the end of 13:51:32 the list of folks who are here. 13:51:36 I'm going to start with Monica 13:51:41 . Take it away. 13:51:46 >> Okay. So 13:51:50 it says, my name is Monica 13:51:54 S. I will be 38 years old in 13:51:58 August. And I live in East 13:52:02 Hampton, and I live 13:52:09 with my mom. 13:52:16 I have a lot of independence 13:52:21 , and I am well-known in 13:52:25 my community. My mom and I 13:52:30 worry about where I 13:52:34 will live after when she passes 13:52:39 on. I wonder 13:52:42 , like, to live in our house 13:52:45 with people helping me, but I 13:52:50 don't know if, that I will 13:52:55 be, be possible. It is 13:53:15 expensive 13:53:17 . 13:53:22 And there are 13:53:26 Mass. health and other benefits 13:53:31 I would like to see 13:53:35 [inaudible] and do more, work 13:53:39 with families like mine 13:53:43 . There are a lot of us with 13:53:46 caretakers who are in their 13:53:51 60's, 70's and 80's. Thank 13:53:51 you. 13:53:52 [ Applause ] 13:54:00 >> I'm just going to 13:54:04 go a little out of order because 13:54:08 I know Latisha has to 13:54:10 leave soon. Is that correct? 13:54:12 >> My mom has to leave 13:54:12 soon. 13:54:14 >> Here's the mic. 13:54:16 >> Hi, everyone -- wow 13:54:17 that's loud! 13:54:19 [Laughter] 13:54:23 My name is Latisha. 13:54:27 [inaudible] 13:54:34 . Hurry, because my 13:54:37 mom has to leave soon. 13:54:41 >> 13:54:51 [inaudible] 13:54:52 [Laughter] 13:54:59 >> People in 13:54:59 Massachusetts should have the 13:55:01 rights to live in their own 13:55:03 homes and community and not be 13:55:07 forced into institutions -- to 13:55:09 go backwards. If anything, it 13:55:10 should continue to go forced. 13:55:12 Right now I live in my own 13:55:13 apartment. I am free to come 13:55:15 and go and make my own decisions 13:55:19 with up support of my mother, 13:55:21 DDS and [inaudible]. I have 13:55:22 access to things I cannot 13:55:24 accomplish on my own through 13:55:26 community partnerships, school 13:55:28 and community with friends, with 13:55:30 some interests I have. Right 13:55:33 now I'm able to access 13:55:34 transportation, education, 13:55:36 medical and health supports by 13:55:38 my local hospital in greater 13:55:40 Boston hospitals. One of my 13:55:43 barriers is planning, emergency 13:55:45 planning, in case supports 13:55:47 change that work well right now. 13:55:49 It's that change that I would 13:55:50 feel like (unable to hear 13:55:53 speaker) to make my own choices. 13:55:55 Can someone tell me what to do? 13:55:57 Some ideas I think about 13:55:59 (unable to hear speaker) access 13:56:01 to healthcare for people on 13:56:05 Medicaid and Medicare dependent 13:56:05 not 13:56:07 covered by insurance for 13:56:08 nutritional support for healthy 13:56:10 body. I'm not able to find 13:56:14 anymon who covers my insurance, 13:56:15 better paying jobs (unable to 13:56:19 hear speaker). Where I came 13:56:22 from [inaudible] is higher and 13:56:23 (unable to hear speaker). That 13:56:24 speaks volume for the person 13:56:25 supported as well. 13:56:27 >> Thank you, 13:56:27 everyone. 13:56:32 [ Applause ] 13:56:36 >> Okay, we're going 13:56:40 to move on to 13:56:50 (name) Angela 13:56:52 , Zoom participant. 13:57:10 >> Cassandra 13:57:11 Xavier? 13:57:14 >> Hello, everyone. 13:57:18 I'm Casandra from the north end 13:57:19 of Boston. Thank you for 13:57:21 letting me in. It's great to 13:57:24 hear everyone, and I am, you 13:57:27 know, I live with Deaf blindness 13:57:31 and I live alone. I find it's 13:57:34 really important that everyone 13:57:39 have access to better paying 13:57:41 jobs, especially if they are 13:57:46 caregivers and PCAs 13:57:49 and sort as well as making sure 13:57:53 that the recipients of these 13:57:57 services get to continue having 13:57:59 access to their health 13:58:00 insurance. Because without 13:58:03 health insurance, you cannot 13:58:09 have access to the really 13:58:10 helpful life-saving medical care 13:58:15 that you have. And 13:58:18 I wanted to say thank you to 13:58:20 everyone who is working with 13:58:22 MassAbility and MCDHH and 13:58:24 everything, and all of the 13:58:28 neighboring agencies. Thank 13:58:28 you. 13:58:33 [ Applause ] 13:58:43 >> (Name) if you can 13:58:45 turn on your mic so we can 13:58:45 spotlight you? 13:58:47 >> Can you hear me? 13:58:49 >> Yes, we can hear 13:58:50 you. 13:58:54 >> I can't turn on my 13:58:57 video. I'm not sure why, but. 13:58:58 It won't let me. Give me one 13:59:02 second. I'm sorry. 13:59:03 >> We see you. 13:59:07 >> Thanks. Good 13:59:08 afternoon, and thank you for 13:59:11 creating this opportunity to 13:59:13 listen and learn and imagine the 13:59:15 future together. I'm Angela, 13:59:17 and I serve as executive 13:59:21 Vice-President of operations at 13:59:22 Nanotuck research associates. 13:59:26 But before that, 13:59:31 I've been a living provider 13:59:33 . Since 1998, my family and I 13:59:35 have shared our lives with a 13:59:37 remarkable woman who chose to 13:59:39 make her home with our family, 13:59:40 and that relationship has been 13:59:42 one of the greatest joys and 13:59:44 privileges of our lives. And it 13:59:45 continues to shape the way I 13:59:47 think about support, 13:59:47 relationships and community 13:59:49 every single day. 13:59:51 Nearly 40 years ago, I 13:59:52 began my career in human 13:59:54 services as a direct support 13:59:55 professional in a sheltered 13:59:57 workshop working along side 13:59:58 people with intellectual and 13:59:59 developmental disabilities 14:00:01 during a time when our field was 14:00:03 just beginning to move away from 14:00:05 segregated settings into our 14:00:06 community life. 14:00:07 Many of the people I 14:00:09 supported did not communicate 14:00:12 with spoken language. Some used 14:00:14 signs, pictures, communication 14:00:16 devices, gestures, or simply 14:00:17 their behavior. 14:00:19 And my job was never 14:00:23 to teach them to communicate 14:00:24 like me. My job was to learn 14:00:26 how to understand them. That 14:00:28 experience taught me something. 14:00:31 That I take with me today and 14:00:32 throughout my career. It taught 14:00:35 me that every person is 14:00:36 communicating. Every person has 14:00:38 strengths. Every person wants 14:00:39 purpose. And every person wants 14:00:40 to belong. 14:00:43 Over the years I've 14:00:45 come to believe that the purpose 14:00:47 of good disability services is 14:00:48 not simply to provide support; 14:00:50 it's to create the conditions 14:00:52 where people can build good 14:00:53 lives and where possibilities 14:00:56 can unfold. Over the years, our 14:00:59 field has changed dramatically. 14:01:01 We've developed stronger 14:01:02 regulations, better training, 14:01:04 improved our quality systems, 14:01:06 and greater understanding of 14:01:07 person-centered practices. And 14:01:09 those advances all matter. But 14:01:11 perhaps the greatest lesson I've 14:01:13 learned is this: That people 14:01:15 don't thrive because of services 14:01:16 alone. They thrive because 14:01:18 they're known, valued, 14:01:19 connected, and given 14:01:21 opportunities to contribute. If 14:01:22 there's one thing I've learned 14:01:24 in nearly 40 years it's that 14:01:26 people I've had the privilege to 14:01:29 know have been my greatest 14:01:30 teachers. Everything I'm 14:01:32 sharing today comes from what 14:01:33 they've taught me. 14:01:34 I'd like to share a 14:01:36 few of the lessons they taught 14:01:38 me about what good disability 14:01:40 services can make possible. The 14:01:43 first lesson is about time. 14:01:44 It's about two men who have 14:01:46 shared a home for more than 30 14:01:47 years. One of them does not 14:01:50 communicate with spoken words. 14:01:52 In over 3 decades of living 14:01:54 together they've developed a way 14:01:54 of understanding one another 14:01:56 that goes well beyond words. 14:01:58 One day while visiting a small 14:01:59 local airport, one of the men 14:02:01 looked over at an airplane and 14:02:03 kicked the tire. Instead of 14:02:04 dismissing the moment his 14:02:06 howsesmate paused and wondered, 14:02:08 hm, I wonder if he wants to fly? 14:02:11 And that simple question led to 14:02:13 scenic flights across New 14:02:15 England, canoeing, tandem 14:02:18 biking, vacations and countless 14:02:19 adventures discovered together. 14:02:20 Years later reflecting on their 14:02:22 life together he said shared 14:02:24 living had given them one 14:02:25 extraordinary gift: Time 14:02:26 together. Time to understand 14:02:29 one another. Time to build 14:02:30 trust. Time to discover 14:02:32 interests. Time to create a 14:02:33 life neither of them 14:02:35 could have imagined at the 14:02:36 beginning. I've come to believe 14:02:40 that time is one of the most 14:02:42 overlooked supports we provide. 14:02:43 Relationships can't be rushed. 14:02:45 Trust can't be scheduled. 14:02:52 Belonging grows over 14:02:55 time. The second lesson learned 14:02:57 is that belonging. I'd like to 14:02:59 share a story about a woman who 14:03:01 has lived with her provider for 14:03:03 many years. When she asked what 14:03:05 she loved most about her life 14:03:07 she talks about Bingo nights, 14:03:08 shopping and laughing together 14:03:09 and every day routines that make 14:03:12 a house feel like a home. But 14:03:14 what moves me most is something 14:03:16 she said. She takes care of me 14:03:19 and I take care of her. She 14:03:22 spoke about making tea when 14:03:23 someone wasn't feeling well, 14:03:24 taking out trash and caring for 14:03:28 the people who cared for her. 14:03:31 It isn't simply receiving 14:03:33 support. It's about belonging. 14:03:35 It's about people building a 14:03:37 life together. The third lesson 14:03:38 is about contribution. It's 14:03:40 about a man who learned that 14:03:42 children in another part of the 14:03:44 world didn't have any clean 14:03:44 water access. 14:03:46 He decided he wanted 14:03:48 to help. And with encouragement 14:03:50 of the people around him and the 14:03:51 community that knew him well, he 14:03:53 raised thousands of dollars to 14:03:55 help build well analysis Africa. 14:03:57 He's also known for 14:03:58 volunteering in his community, 14:03:59 helping neighbors and always 14:04:01 looking for ways to make someone 14:04:03 else's life better. 14:04:04 He isn't defined by 14:04:07 the supports he receives. He's 14:04:09 defined by the differences he 14:04:10 makes. And those three lessons 14:04:12 have taught me something. When 14:04:14 we give people time, 14:04:16 relationships grow. When 14:04:18 relationships grow, belonging 14:04:20 follows. And when people truly 14:04:22 belong, they naturally begin to 14:04:23 contribute to their families, 14:04:25 their neighborhoods and their 14:04:25 communities. 14:04:30 At Nanotuck we support 14:04:31 people through shared living, 14:04:33 adult family care and community 14:04:34 based day services all across 14:04:36 Massachusetts. We've invested 14:04:38 in positive behavioral supports, 14:04:40 quality improvement, and systems 14:04:42 that help us evaluate and 14:04:44 improve our work. And those 14:04:45 systems matter. They're 14:04:47 important. But they're not the 14:04:48 goal. The goal is helping 14:04:50 people build good lives, lives 14:04:52 filled with purpose, 14:04:55 relationships, contribution and 14:04:55 belonging. 14:04:56 One of the things 14:04:57 we've learned over the many 14:04:59 years is that quality cannot be 14:05:02 reduced to compliance. 14:05:04 Licensure, accreditation and 14:05:05 oversight are essentially 14:05:06 because they help us examine our 14:05:09 work and hold us accountable but 14:05:12 they don't create equality. 14:05:14 They reveal it. Real equality 14:05:15 is reflected in every day lives 14:05:17 of people that they're able to 14:05:19 live. Do they have choices? Do 14:05:20 they have meaningful 14:05:22 relationships? Do they 14:05:24 experience dignity? Do they 14:05:25 have opportunities to 14:05:27 contribute? Do they feel at 14:05:29 home? Those are the outcomes 14:05:30 that matter most. As 14:05:32 Massachusetts continues to think 14:05:34 about employment, 14:05:35 transportation, health equity 14:05:37 and long term supports, I hope 14:05:39 we can continue building on what 14:05:41 we've already learned. I hope 14:05:42 we continue measuring not only 14:05:43 the service was people receive, 14:05:46 but the lives those services 14:05:48 make possible. I hope we 14:05:50 continue investing in 14:05:54 relationships that help people 14:05:57 thrive, families, living 14:06:01 providers, adult direct support 14:06:03 professionerrals, maishes, and 14:06:04 community members. 14:06:05 Relationships are not simply a 14:06:06 benefit of good services, 14:06:07 they're one of the most 14:06:09 important supports we can 14:06:11 foster. I hope we continue 14:06:13 building systems that recognize 14:06:15 the value of prevention, 14:06:18 stability and long term 14:06:19 relationships. We know that 14:06:21 stable homes, meaningful 14:06:23 relationships and understanding 14:06:25 behaviors and communication and 14:06:26 strong community connections all 14:06:29 improve health, reduce crises 14:06:32 and strengthen communities. Our 14:06:33 funding and quality systems 14:06:35 should continue to recognize and 14:06:36 encourage those outcomes. Our 14:06:38 mission is to link with 14:06:40 communities to create conditions 14:06:42 for inclusion and social change 14:06:44 and I've come to believe those 14:06:45 words more deeply every year. 14:06:47 Organizations don't create 14:06:49 belonging. People do. I've had 14:06:50 the privilege of witnesses that 14:06:53 truth every day for nearly three 14:06:56 decades in my own home. 14:07:01 Our goal is to create 14:07:02 conditions where belonging can 14:07:03 grow. As we continue to improve 14:07:04 disability services in 14:07:05 Massachusetts I hope we continue 14:07:07 to ask ourselves one simple 14:07:08 question: Are we building 14:07:10 systems that simply deliver 14:07:11 services? Or are we building 14:07:13 systems that can create 14:07:14 conditions where people can 14:07:16 build good lives and experience 14:07:18 true belonging? Because 14:07:21 services matter, but 14:07:22 relationships change lives. 14:07:24 When we create the 14:07:25 conditions for relationships to 14:07:27 grow, belonging follows. When 14:07:29 people truly belong, they find 14:07:31 opportunities to contribute to 14:07:32 their families, their neighbors 14:07:35 and their communities. I 14:07:36 believe that's the futures we're 14:07:38 all working towards, and I thank 14:07:41 you very much for listening to 14:07:42 me today. 14:07:43 [ Applause ] 14:07:45 [ Cheers and Applause] 14:07:55 >> 14:07:56 (Name). 14:07:58 >> Hi, everybody. My 14:08:03 name is jean. I'm an employment 14:08:06 supervisor -- (unable to hear 14:08:10 speaker) -- and also a parent. 14:08:13 30 years ago I met my wife, also 14:08:16 worked at riverside and shortly 14:08:19 after we were married my son was 14:08:22 born and later diagnosed with 14:08:27 autism, a common duality 14:08:29 . We grew up in the system -- 14:08:31 >> Sorry, can you 14:08:32 speak into the mic, please? 14:08:34 >> Sorry. 14:08:35 >> Thank you. 14:08:37 >> So we're involved 14:08:40 with the system. Our school 14:08:43 system was ordinary. We 14:08:46 struggled with [inaudible]. We 14:08:51 were served by the united arc 14:08:55 of [inaudible] out in 14:08:57 greenfield. That's where we 14:09:02 live. 14:09:04 (unable to hear speaker). I 14:09:06 really appreciate what Angela 14:09:07 was talking about and others 14:09:12 have mentioned so far about 14:09:15 -- (unable to hear speaker) -- 14:09:18 full membership in his church, 14:09:22 in his neighborhood, um. 14:09:26 Services that we got for him 14:09:30 were agency of choice right 14:09:32 after high school. During 14:09:36 Covid. And that worked 14:09:38 beautifully. There were some 14:09:40 staffing, some staffing issues 14:09:44 with agency with choice dern 14:09:47 (indiscernible) once in a 14:09:48 while. So what we decided to do 14:09:51 was make the trek down to east 14:09:54 Hampton three days a week. He 14:09:57 is really benefiting from the 14:10:01 services that he has in East 14:10:02 Hampton. But what we would 14:10:04 really love, a vision that we 14:10:08 have for Noah and that I believe 14:10:10 he has for himself, is to stay 14:10:15 in Greenfield, to associate with 14:10:20 his former high school 14:10:21 schoolmates, maybe get 14:10:25 a job with one of them 14:10:28 (indiscernible). They would 14:10:29 look out for him and really care 14:10:32 for him. So I'm just here today 14:10:37 to kind of highlight the need 14:10:41 in our county, the need for 14:10:46 services, day program. Franklin 14:10:48 county is an underserved 14:10:53 region. Our family knows others 14:10:57 that would really be well-served 14:11:01 by agencies up in greenfield, a 14:11:05 little closer to home 14:11:09 than east 14:11:11 Hampton or springfield. I'm 14:11:14 honored to be here today in this 14:11:14 room, and am grateful that 14:11:17 you're listening, that you 14:11:19 legislators are here and so 14:11:23 deeply involved. You are, um, 14:11:25 you are here listening and that 14:11:26 just means so much to us. Thank 14:11:27 you very much. 14:11:32 [ Applause ] 14:11:37 >> Next up on Zoom, 14:11:40 Ali. Good morning. 14:11:44 >> Hello, everyone. I 14:11:45 know the audio has been a little 14:11:46 bit challenging, so before I 14:11:48 speak I would like to just check 14:11:50 in that everyone is able to hear 14:11:54 me or receive my communication 14:11:54 well. 14:11:55 >> Yes. 14:11:57 >> Are there any 14:11:58 issues? Okay, thank you, Sarah. 14:12:03 Okay. Awesome. All right. 14:12:04 Well, it is so great to see 14:12:06 everyone here today. Thank you 14:12:09 for hosting this, for supporting 14:12:11 the disability community, and 14:12:13 thank you to everyone who 14:12:15 hassles chosen to share and 14:12:17 share your voice. It's really 14:12:17 important. 14:12:18 And what I'm coming 14:12:20 here with today is, well, 14:12:21 imagine this. Okay? You sign 14:12:22 up for a conference. You get 14:12:24 ready for work. You're excited 14:12:26 to go out with friends. Or you 14:12:28 just need to run a simple errand 14:12:30 at the grocery store. You're 14:12:31 looking forward to getting the 14:12:33 work done, or having some fun as 14:12:34 you head out to the destination. 14:12:36 But then when you arrive, you 14:12:38 go to interact with someone only 14:12:42 to be hit with a waff of 14:12:44 fragrance, perfume. Your eyes 14:12:48 start to itch, you sinuses get 14:12:50 congested as you slowly back 14:12:52 away respectfully. You retreat 14:12:54 to the bathroom to take care of 14:12:56 those symptoms only to be faced 14:13:00 with air fresheners or soap, now 14:13:03 you start to coughU your throat 14:13:05 close es up. So your one simple 14:13:07 outing has turned into an ER 14:13:09 visit. This is what occurs for 14:13:11 many people in the community who 14:13:14 navigate the in vilt of masked 14:13:17 cell activation syndrome or 14:13:19 multiple chemical sensitivities. 14:13:22 I know, because I navigate this 14:13:22 myself. 14:13:25 For those who 14:13:31 experience anaphalactic allergic 14:13:34 reactions or triggers from 14:13:36 chemicals, it can feel near 14:13:36 impossible to be out in society. 14:13:38 We want to be part of 14:13:40 everything, but products such as 14:13:45 perfume, cologne, 14:13:49 scented body lotion, 14:13:52 essentially oils, hair sprays, 14:13:55 room sprays and more, can 14:13:56 quickly cause an emergency. 14:13:58 They're simple products to avoid 14:13:59 but yet when we try to advocate 14:14:01 for eliminating them, because of 14:14:03 disability, the responses are 14:14:05 often dismissive. Such as: The 14:14:07 bathroom smells, so we need the 14:14:08 fragrance. Well, the smell of 14:14:10 poop has never killed anybody. 14:14:11 But the chemicals used -- 14:14:12 [Laughter] 14:14:14 -- the chemicals used 14:14:15 to cover it up could. 14:14:18 So for those who 14:14:19 navigate this disability, 14:14:21 unfortunately we're often left 14:14:23 out. It's exhausting to 14:14:25 constantly have to ask about 14:14:27 fragrances only to be dismissed. 14:14:29 When a building or a person 14:14:32 uses fragrances, it's considered 14:14:34 disability discrimination, 14:14:36 because anyone navigating these 14:14:37 conditions are unable to 14:14:39 participate and have equal 14:14:40 access to the location or the 14:14:42 event. It happens to me 14:14:45 personally. I can't use public 14:14:46 transportation. I have to dodge 14:14:48 people at events or ask if they 14:14:50 have on perfume or cologne as 14:14:52 they're trying to greet me. Or 14:14:54 just skip a hand shake or a hug, 14:14:56 or unfortunately, need to leave. 14:14:59 In fact, I had two recent 14:14:59 examples related to 14:15:01 organizations that I know are 14:15:03 present today. One at a recent 14:15:05 event I was a speaker and I 14:15:06 could not interact with or be 14:15:08 near the room monitor, which was 14:15:10 really important for the flow of 14:15:11 the session. 14:15:13 And secondly, I had an 14:15:15 appointment to meet about 14:15:16 services which I've waited years 14:15:20 for, and I had to immediately 14:15:24 cancel due to the person 14:15:26 choosing to vape immediately 14:15:27 before entering my home. This 14:15:29 should not be happening. Not 14:15:31 only is this a detriment to the 14:15:33 herein knave gaight a disability 14:15:36 -- navigating a disability but 14:15:37 also hazardous to those around 14:15:39 toxic chemicals. In fact, the 14:15:41 smell of clean or fresh is no 14:15:43 smell at all. So I want to 14:15:44 advocate for this specific realm 14:15:47 of disability that often goes 14:15:50 unnoticed, unprotected, and 14:15:52 unheard. Especially for all the 14:15:53 agencies here who support 14:15:55 persons with disabilities, I ask 14:15:59 you that begin to implement 14:16:01 fragrance-free and smoke-free 14:16:02 policies in your establishment, 14:16:08 your percent -- 14:16:14 per son el -- thank you for 14:16:15 listening today and feel free to 14:16:17 reach out to me any time to talk 14:16:18 about this further and support 14:16:21 you all in that process. Thank 14:16:21 you. 14:16:22 [ Cheers and 14:16:23 Applause] 14:16:27 >> Thank you. We're 14:16:29 going to move onto the other 14:16:33 side of the table 14:16:37 starting with Jonathan 14:16:43 (Name). 14:16:46 >> Can everyone hear 14:16:46 me? 14:16:47 >> No. 14:16:51 >> It's turned off. 14:16:54 >> Testing, one, two. 14:16:57 >> That's good. 14:17:02 >> [inaudible] 14:17:04 Good afternoon, 14:17:06 everyone. My name is Jonathan, 14:17:08 and I'm a Deaf and hard of 14:17:13 hearing advocate. Here 14:17:17 we are in July, 14:17:19 recognizing disability pride 14:17:19 month -- 14:17:19 [ Applause ] 14:17:24 -- as well 14:17:27 the Americans with disability 14:17:31 act as of 36 years coming up. 14:17:32 [ Applause ] 14:17:34 I'm grateful for the 14:17:37 opportunity to celebrate the 14:17:39 disability community and the 14:17:42 outgoing work of spaces where 14:17:44 people with disability have 14:17:47 value are supported and fully 14:17:48 included. It's great to be here 14:17:51 with all of you and to continue 14:17:53 together. Thank you for giving 14:17:54 me the stage to talk about 14:17:56 something that shaped every 14:17:59 workplace, every system, and 14:18:02 every person trying to fill out 14:18:06 an impact. We have to make sure 14:18:08 that they don't become 14:18:08 barriers. 14:18:13 For me, 14:18:16 this is an experience I've 14:18:20 spent years navigating in 14:18:22 classrooms, airports, etc., and 14:18:24 pretty much every day life. One 14:18:28 thing I've learned is this. 14:18:32 (unable to hear speaker). And 14:18:38 too often, (indiscernible). 14:18:43 Policies are (indiscernible) 14:18:45 access. They're meant to create 14:18:49 clarity, not confusion. And 14:18:54 when someone says, sorry 14:18:56 , what the policy is saying is I 14:18:59 don't know how to support you, 14:19:03 or I haven't been educated on 14:19:06 this -- (background noise on 14:19:08 Zoom) -- or I'm not comfortable 14:19:12 stepping outside this script. I 14:19:15 would say this. You can create 14:19:18 barriers with your policy or 14:19:22 your lack of knowledge. 14:19:27 (indiscernible) from all of 14:19:32 us. 14:19:40 -- to be flexible 14:19:45 . Human instead of 14:19:50 routine. In the workforce, 14:19:55 disability can look like many 14:19:56 things. It can be add justing 14:19:59 a process, rethinking a 14:20:00 requirement. It could be 14:20:01 asking: What do you need? How 14:20:05 can I help you? Instead of: We 14:20:08 don't do it here. It can be 14:20:12 recognizing that policies should 14:20:15 transform. Why? 14:20:20 Because people transform. These 14:20:22 small steps send a powerful 14:20:23 message. You belong here. We 14:20:25 see you. We want to grow with 14:20:27 you. And when workplaces 14:20:31 embrace the mind set, everything 14:20:36 changes. Trust. People feel 14:20:41 safe. 14:20:45 (indiscernible) isn't just the 14:20:46 right thing to do. It's the 14:20:49 smart thing to do. How 14:20:50 organizations stay important, 14:20:54 responsive and human. Support 14:20:58 is (indiscernible). It's a 14:21:02 culture. (indiscernible) even 14:21:04 when there's a problem 14:21:05 navigating with someone when 14:21:09 they're not in a room. 14:21:13 Disability (indiscernible) not 14:21:18 an after thought. Support 14:21:20 doesn't just help the 14:21:21 community. It helps everyone. 14:21:23 Because when you build policies 14:21:27 that are flexible and inclusive, 14:21:29 every single person benefits. 14:21:35 So, whatever 14:21:38 workplace you're involved, 14:21:42 healthcare, business, education, 14:21:44 I want to leave you with this: 14:21:47 You have the power to shape the 14:21:51 system that you want to. You 14:21:56 can question outdated 14:22:00 policies, challenge barriers, 14:22:04 you can be the person someone 14:22:08 (indiscernible). And trust me, 14:22:11 those moments matter. They 14:22:14 change lives. They change 14:22:18 minds. Thank you for 14:22:19 listening. Thank you to the 14:22:22 next generation of leaders, are 14:22:25 flexible, informed and truly 14:22:26 accessible. Together, we rise. 14:22:28 Thank you. 14:22:29 [ Cheers and 14:22:30 Applause] 14:22:38 >> Marie. 14:22:40 >> Good afternoon. 14:22:43 I'm from Jericho, right down the 14:22:46 road, three miles. Jericho 14:22:50 started in the 60's because 14:22:54 (indiscernible) a version of 14:22:56 their child who had 14:22:57 developmental disabilities who 14:22:59 was not allowed to be part of 14:23:01 their church. This grew into, 14:23:02 within the next few years, 14:23:05 something he created to create 14:23:08 community for all people with 14:23:10 disabilities. And over 50 years 14:23:13 ago, Jericho in Holyoke was 14:23:15 built so we could keep that 14:23:17 community growing. What I'm 14:23:21 seeing, my son is on the 14:23:27 autism spectrum disorder. As 14:23:29 a young mom in a rural 14:23:30 community, I had to community. 14:23:33 It was very hard for me to find 14:23:34 places to bring him where he 14:23:37 felt safe and comfortable in 14:23:40 areas that aren't too loud for 14:23:42 him where he can get sensory 14:23:44 overload. When I came to 14:23:46 Jericho, what I realized is 14:23:47 we're rebuilding community that 14:23:50 has been lost due to technology 14:23:53 or even the pandemic. People 14:23:57 are alone more than ever. And 14:24:00 often what I see when we have 14:24:03 events, events are the vehicle. 14:24:04 We're trying to 14:24:06 bring people together at 14:24:08 Jericho. And what I see is 14:24:11 parents who are able to breathe 14:24:14 because their child is accepted 14:24:15 there. And they're able to talk 14:24:17 to each other and create their 14:24:19 own community. And we are 14:24:20 planning for all the things that 14:24:23 all of these agencies work at, 14:24:26 so what happens when an aging 14:24:27 parent is no longer there? How 14:24:30 do we create community now so 14:24:33 that those children, those 14:24:35 disabled people, still have a 14:24:36 community around them that can 14:24:38 help them? And that is what we 14:24:40 build. The difference with us, 14:24:42 too, is we're not age limiting. 14:24:45 So we are -- Jericho, we have 14:24:47 events where you will see 14:24:48 somebody that's five years old 14:24:50 and somebody that's 70. And 14:24:52 it's an incredible community, 14:24:55 and I think that in this time, 14:24:58 in history, when we are trying 14:25:01 to close down, or the federal 14:25:02 government is trying to close 14:25:04 down access to people with 14:25:05 disabilities, now's the time for 14:25:07 us to grow together and build 14:25:09 that community together. Thank 14:25:09 you. 14:25:11 [ Cheers and Applause] 14:25:25 >> Hi, my name is 14:25:27 Carla. I'm part of riverside 14:25:29 industries. I'm glad to see so 14:25:31 many familiar faces. It's great 14:25:34 that I'm sitting next to you, 14:25:38 because it was father Wagner and 14:25:40 some of those same people who 14:25:44 started Jericho who also started 14:25:45 (indiscernible) so it's great 14:25:47 here we are 50 something years 14:25:49 after them. I want to thank you 14:25:51 for the opportunity to speak 14:25:53 today to share my experiences 14:25:54 and concerns. As Director of 14:25:56 community based day services I 14:25:58 have witnessed funding and 14:26:00 resulting services available to 14:26:03 individuals with 14:26:04 intellectual-developmental 14:26:08 disabilities and autism, 14:26:10 flukeuate over the past 0 14:26:12 years. Increasing provider 14:26:15 rates from the 53 to the 75th 14:26:20 percentile is well understood 14:26:23 in our field. It's a lot more 14:26:25 money for direct care staff. 14:26:28 (unable to hear 14:26:31 speaker). As Director of 14:26:35 non-profit organization I see 14:26:37 (indiscernible) suddenly shrink. 14:26:38 At the same time I've seen 14:26:40 dedicated and highly skilled 14:26:42 staff leave our sector in favor 14:26:44 of for-profit opportunities 14:26:45 because their financial 14:26:46 circumstances leave them with 14:26:48 little choice. Another 14:26:50 significant concern within the 14:26:53 provider couldn't is the 14:26:54 insufficient funding available 14:26:56 for trained, clinical support 14:26:58 staff. Many individuals 14:27:02 receiving DDS services have not 14:27:06 fully developed effective coping 14:27:08 and problem solving strategies, 14:27:10 stresses and other challenges. 14:27:12 Limited communication skills is 14:27:14 sometimes make it difficult for 14:27:17 individuals to express their 14:27:19 needs, which may result in 14:27:20 behaviors that place themselves 14:27:22 or others at risk in the 14:27:22 community. 14:27:28 To recruit board 14:27:33 certified analysts, CBAs and 14:27:34 offer salaries that are 14:27:35 competitive with those available 14:27:37 in school districts and private 14:27:39 sector organizations. 14:27:41 Non-profit DDS providers are not 14:27:44 only expected to maintain CBAs 14:27:46 on their staff but deeply value 14:27:48 the expertise and values they 14:27:50 bring to support both 14:27:51 individuals and front line 14:27:53 employees. 14:27:55 With a small exception 14:27:59 for one contract, the funding is 14:28:02 not currently included in day 14:28:06 services rates. Many support 14:28:08 professionals entering the field 14:28:09 have limited experience 14:28:10 supporting people with 14:28:12 disabilities and require 14:28:16 extensive training. Skilled 14:28:18 CBAs are essential in providing 14:28:19 training, mentoring staff and 14:28:21 ensuring that high quality 14:28:23 services are delivered every 14:28:26 day. I recognize that balancing 14:28:28 the important financial 14:28:30 priorities facing the 14:28:34 Commonwealth is a challenging 14:28:35 responsibility, and one I do not 14:28:35 envy. 14:28:38 However, sustainable 14:28:39 investments in provider rates 14:28:41 and clinical staffing are 14:28:44 critical to maintaining a stable 14:28:46 workforce and ensuring that 14:28:49 individuals with intellectual 14:28:51 and developmental disabilities 14:28:53 receive quality supports they 14:28:54 deserve. Thank you for your 14:28:56 time and consideration. 14:28:58 [ Cheers and 14:28:58 Applause] 14:29:08 >> You really do make 14:29:13 our lives better. I feel the 14:29:14 stress melting away. The social 14:29:17 aspect of this? It's 14:29:19 incredible. (unable to hear 14:29:21 speaker) -- but then I said if 14:29:22 they're going, I'm going to be 14:29:25 there, too. This is for my 14:29:28 mental health. I'm Executive 14:29:30 Director of (indiscernible). 14:29:32 It's a tremendous privilege to 14:29:34 be part of moments like these on 14:29:38 a regular basis. 14:29:41 (indiscernible) each year -- 14:29:43 disabilities and loved ones 14:29:44 throughout Massachusetts, 14:29:46 furthering health equity to 14:29:48 support access to the great 14:29:50 outdoors. Time and again we 14:29:52 hear how powerful it is to have 14:29:54 access to nature, how meaningful 14:29:56 it feels to be fully included, 14:30:00 and how connecting it is to find 14:30:03 (indiscernible) along side 14:30:05 family and friends. We see joy, 14:30:07 laughter, smiles, and feel a 14:30:09 sense of belonging at every 14:30:12 program we run. The greatest 14:30:15 barrier in our programs is 14:30:17 transportation. People with 14:30:20 disabilities prevent them from 14:30:23 driving, not allowing them to 14:30:25 access our state's most 14:30:29 beautiful resources. 14:30:32 (indiscernible). Employment and 14:30:35 medical appointments 14:30:38 (indiscernible). Recreation is 14:30:42 out of reach. Once people 14:30:42 arrive, accessible 14:30:44 infrastructure matters in 14:30:46 creating a welcoming and 14:30:48 inclusive environment. 14:30:53 Accessible parking, accessible 14:30:53 (indiscernible). We still have 14:30:56 far to go including building a 14:30:58 network of accessible trails so 14:31:00 that everyone can experience the 14:31:01 physical and mental health 14:31:03 benefits of being in nature. 14:31:04 Finally, I want to 14:31:07 highlight the need for 14:31:07 (indiscernible) in public 14:31:09 facilities including our state 14:31:11 parks. Access to clean, private 14:31:12 place to care for a loved one 14:31:16 with a disability. 14:31:19 (indiscernible). For many, 14:31:23 access is sending a powerful 14:31:24 message. Thank you. 14:31:26 [ Cheers and 14:31:26 Applause] 14:31:34 >> The community 14:31:36 conversation will be extended at 14:31:38 least 15 minutes. We're going 14:31:41 to go back to Zoom, Matthew. 14:31:49 >> My name is Matthew, 14:31:51 I worked for 20 years at UMass 14:31:54 Amherst where I often had to 14:31:56 advocate for accessibility for 14:31:58 websites, documents and third 14:31:59 party software. I'm speaking on 14:32:01 behalf of the alliance against 14:32:04 ableism, a campus group at UMass 14:32:05 including students, faculty, 14:32:07 staff and community members. We 14:32:08 have worked for years to address 14:32:10 the concerns of people with 14:32:12 disabilities who work and study 14:32:13 at the university. 14:32:15 There are serious 14:32:17 disability rights issues at 14:32:18 UMass which we believe rise to 14:32:21 the level of outright 14:32:23 discrimination and create a 14:32:24 hostile environment for mem brs 14:32:27 of our community. These issues 14:32:28 include: Abrupt closing of 14:32:30 accessible workplace office 14:32:31 without input from the community 14:32:32 and without adequate plan in 14:32:34 place to meet needs of employees 14:32:35 with disabilities. 14:32:38 Recurring problems 14:32:40 with stage access to graduating 14:32:44 students who use wheelchairs. 14:32:45 Architectural access problems 14:32:46 including the design and 14:32:50 placement of curb cuts, power 14:32:52 doors and timely snow removal. 14:32:55 The lack of snow removal has 14:32:56 prevented students housed in 14:32:58 accessible dorms from accessing 14:32:58 food. 14:33:00 The university 14:33:02 consistently fails to consult 14:33:05 and include disabled people in 14:33:07 procedures and policy. The 14:33:09 principal should be: Nothing 14:33:11 about us without us. 14:33:15 In 2021, a campus 14:33:15 climate survey reported that 14:33:18 people with disabilities 14:33:20 experienced, "the least sense of 14:33:23 belonging" of any group on 14:33:26 campus. In 2022, a group called 14:33:29 access UMass submitted a 30-page 14:33:32 report listing other issues and 14:33:34 calling for a timely response. 14:33:35 The administration has paid lip 14:33:37 service to meeting these demands 14:33:39 but has done little by way of 14:33:40 actual remediation. 14:33:43 This is unacceptable 14:33:44 for any educational setting. 14:33:48 Much less the university's 14:33:49 flagship campus. The 14:33:50 Commonwealth prides itself on 14:33:52 being open and affirming to all 14:33:54 people and the current situation 14:33:57 on campus is a blight on those 14:33:59 espoused values. Thank you. 14:34:01 [ Cheers and 14:34:01 Applause] 14:34:11 >> Mary Joe on Zoom. 14:34:16 >> 14:34:27 I'll come back to you. Oh. Go 14:34:27 ahead. 14:34:31 >> 14:34:41 I apologize. I didn't plan to 14:34:42 make any kind of talk today, so 14:34:47 thank you for including me. 14:34:51 >> We can come back to 14:34:55 you while you're gathering your 14:34:56 thoughts. You don't have to 14:34:57 speak. No pleasure. 14:35:07 >> Matthew? 14:35:11 >> 14:35:16 Every second, every minute, 14:35:20 every hour of the 14:35:25 day -- disability matters, if 14:35:28 the voice matters, if the voice 14:35:30 matters. We get labeled as 14:35:36 special, austic, different, 14:35:38 unique. Many agencies are the 14:35:40 last individual resource to 14:35:41 help. There's no other option. 14:35:43 But many of these how many 14:35:45 resource agencies don't see us, 14:35:50 the individual. They don't see 14:35:52 the individual who is there 14:35:53 given the trust, the disability 14:35:57 and the time. They simply shove 14:36:01 us into a file cabinet and leave 14:36:03 us to walk in the dust for 14:36:05 months on end. Then they take 14:36:09 us out and 14:36:11 assume everything is good. A 14:36:13 human being is not a piece of 14:36:15 paper, cannot be categorized and 14:36:18 forgotten in a dark drawer. 14:36:20 When we walk through these 14:36:23 doors, we are not asking for 14:36:26 (indiscernible). We are asking 14:36:31 for basic, human rights. 14:36:36 We expect to be partnership 14:36:40 . We see too often 14:36:44 systematic neglect. Think 14:36:46 about what it means to wait for 14:36:50 months in silence. 14:36:56 (indiscernible) wondering if 14:36:56 your future ever 14:36:58 crosses the mind of the person 14:37:02 assigned to you to help you. 14:37:07 (indiscernible) this 14:37:08 routine must change and must 14:37:12 change right now. Agencies need 14:37:16 to remember the human heart. We 14:37:18 need advocates who look us in 14:37:20 the eye, professionals who 14:37:24 listen to our voices and assist 14:37:26 us by lives improved, not cases 14:37:28 closed. True support is not a 14:37:32 one way street where we give out 14:37:37 time again 14:37:38 (indiscernible). True support 14:37:42 is collaboration, empowerment, 14:37:46 recognizing our voices and our 14:37:48 lives matter. Thank you. 14:37:49 [ Cheers and 14:37:49 Applause] 14:37:59 >> Jennifer? 14:38:00 >> Hi, everybody. 14:38:03 Thank you so much for having me. 14:38:05 This is an incredible 14:38:07 opportunity, and I am humbled to 14:38:10 be at this table. Most directly 14:38:13 the people who are individually 14:38:15 impacted by services and 14:38:17 supports that we as a community 14:38:19 provide to each other. 14:38:23 I am Jennifer. I am 14:38:25 the Executive Director and 14:38:27 founder of the (Name) center. 14:38:28 The field center is a small 14:38:32 agency in western Massachusetts 14:38:34 just up the road, and we provide 14:38:38 services and supports to 14:38:39 individuals, their families and 14:38:41 their service providers. 14:38:44 We have been changed 14:38:45 recently. For a long time we 14:38:49 were (indiscernible), and we 14:38:53 recently started a partnership 14:38:57 and now part of the 14:39:01 huchens community. 14:39:03 (unable to hear speaker). We 14:39:05 are better able to support the 14:39:07 community than ever. Okay. 14:39:09 To that end, I want to 14:39:12 talk about the opportunities 14:39:16 that we see every day from 14:39:17 individuals that participate in 14:39:20 our community. Number one. 14:39:23 Isolation is (indiscernible). 14:39:26 Staying in a basement playing 14:39:30 video games and relying on 14:39:34 supports that you want to do is 14:39:38 (indiscernible). We need to get 14:39:41 people, friends, community 14:39:43 members and family members to 14:39:45 help define themselves as more 14:39:47 than a person with a problem, 14:39:49 more than a person with a 14:39:53 challenge, as a person with 14:39:58 strength, autonomy, and a person 14:40:02 who participates in that 14:40:02 community. 14:40:03 To that degree one 14:40:04 thing we do at the field center 14:40:08 is provide supports and 14:40:09 trainings to wonderful 14:40:10 organizations out there that 14:40:12 serve individuals traditionally 14:40:13 with physical disabilities, and 14:40:17 we help support them in becoming 14:40:19 more (indiscernible) friendly. 14:40:22 Curb cuts, CART services are 14:40:26 absolutely essential and so are 14:40:29 sensory activities. So as the 14:40:30 lighting, the sounding, the 14:40:33 smell and things that 14:40:36 individuals who are autistic 14:40:38 (indiscernible) every day and 14:40:39 struggle with. 14:40:41 The second thing we 14:40:43 need to think outside the box. 14:40:45 We need to think about 14:40:46 (indiscernible). You've heard 14:40:48 it in real estate. It's about 14:40:50 location, location, location. 14:40:54 Well, the services and supports 14:40:55 we provide it's about funding, 14:40:57 funding and funding. We can't 14:41:01 let our own piece of the pie 14:41:03 (indiscernible). We can't 14:41:05 compete with each other. It's 14:41:06 really, really challenging, I 14:41:08 think one thing that I've said 14:41:12 before is silos are really good 14:41:15 . For storing grain. But 14:41:16 they're not very good for 14:41:18 providing services and supports 14:41:20 for people who need them. The 14:41:21 funding needs to be flexible. 14:41:23 The funding needs to be directed 14:41:26 by individuals themselves, by 14:41:28 family members, and by treatment 14:41:30 providers who really know what 14:41:31 needs to happen out there. 14:41:32 So with that funding 14:41:35 and with that support that you 14:41:39 are all working so hard on, we 14:41:43 need to be making sure that our 14:41:47 equipment that funding will 14:41:50 provide. And it's important 14:41:50 that we continue to advocate as 14:41:54 a community. As the sibling and 14:41:56 guardian of an individual who 14:41:59 has autism and behavioral health 14:42:00 needs, I know more than ever 14:42:02 what it's like to be left out. 14:42:05 As a family member, all his life 14:42:08 I was told, "well you're not his 14:42:10 mom. We can't help." Over and 14:42:13 over again. Our mother passed 14:42:15 away suddenly and when they 14:42:17 passed away I became his 14:42:19 guardian. So if someone, 14:42:21 anyone, listen to me and be part 14:42:22 of conversation earlier, I think 14:42:23 that really would have helped 14:42:25 things and helped outcomes. I'm 14:42:27 proud to say my brother now 14:42:31 works at Big Lot, has held a job 14:42:33 for six months -- [ Cheers and 14:42:36 Applause] -- I'm very proud of 14:42:36 him. 14:42:39 Finally, the last 14:42:43 piece I wanted to talk about 14:42:46 -- oops, sorry, my notes -- 14:42:49 about listening. As I 14:42:50 mentioned, I have a brother who 14:42:53 is on the autism spectrum as 14:42:55 well as schizophrenia and other 14:42:56 behavioral health needs. 14:43:01 Listening to all of us is 14:43:02 critical. You just heard 14:43:04 "nothing about us without us." 14:43:07 Let's make the "us" as strong as 14:43:08 possible. Thank you. 14:43:10 [ Cheers and Applause] 14:43:17 >> Suzanne? 14:43:20 >> Hi, my name is 14:43:25 Suzanne. I'm a client of 14:43:28 MassAbility and (indiscernible). 14:43:33 . (unable to hear 14:43:37 speaker) -- and 14:43:37 awesome -- 14:43:39 >> Could you speak up 14:43:41 louder, please? 14:43:45 >> -- 14:43:51 autism in my early 20's. 14:43:54 Before MassAbility, I had a 14:43:57 hard time accessing a process. 14:44:00 I'd never been invited to an 14:44:01 (indiscernible) (unable to hear 14:44:03 speaker). I didn't know where 14:44:05 to start. When I started 14:44:08 working with (indiscernible) I 14:44:12 immediately (indiscernible). My 14:44:16 job coach has always been making 14:44:21 sure to be -- comfortable for me 14:44:23 while also -- discuss detail 14:44:26 what I'm looking for in a job 14:44:29 and a fit that's good for me 14:44:31 rather than the first job 14:44:33 that's available. Today, I am 14:44:36 currently in an internship with 14:44:39 the Chamber of Commerce, making 14:44:40 connections by working with 14:44:43 local business community, and 14:44:47 have a lot more respect for 14:44:50 hosting this meeting today 14:44:51 (indiscernible). But I 14:44:55 appreciate most is their 14:44:57 dedication. When I wasn't as 14:44:58 comfortable with my driving 14:45:01 skills and couldn't get to east 14:45:03 Hampton (indiscernible) come 14:45:08 with me. Every aspect of the 14:45:10 job program has been tailored 14:45:12 individually towards making me 14:45:14 the best version of myself that 14:45:18 I can be. And as I continue to 14:45:21 move forward, I'm confident that 14:45:22 riverside will continue to 14:45:24 support me, too. Thank you. 14:45:25 [ Cheers and Applause] 14:45:32 >> Thank you all for 14:45:35 your patience. We only have a 14:45:39 few individuals left. 14:45:39 Rob? 14:45:42 >> Good afternoon. 14:45:44 Thank you for allowing me to 14:45:48 share my voice today. I'm here 14:45:51 today as a professional, a 14:45:54 taxpayer and a person 14:45:55 (indiscernible). Disabled 14:45:57 community here in Massachusetts. 14:45:59 I am also here to talk about 14:46:01 the severe barriers our 14:46:04 community faces in securing 14:46:06 livable wage in (indiscernible). 14:46:08 The reality is that finding 14:46:10 employment for disabled 14:46:13 individuals is an uphill battle. 14:46:16 -- business administration 14:46:19 from Salem State university and 14:46:22 applied for the position -- I 14:46:24 have repeatedly shuts its doors. 14:46:26 Because of this lack of 14:46:28 opportunity, I'm currently 14:46:30 (indiscernible) and starting my 14:46:33 own book keeping business. 14:46:36 [ Applause ] 14:46:40 Thank you. 14:46:43 The disabled community should 14:46:48 not have to rely on 14:46:49 (indiscernible) -- we should 14:46:52 not have to start an entire 14:46:54 business from scratch because 14:46:56 the traditional job market 14:46:58 refuses to see our work. We 14:46:59 have a fundamental right to work 14:47:03 along side our peers and earn a 14:47:07 true living wage, achieve 14:47:11 financial stability, should be 14:47:15 -- I'm sorry -- I'm sorry -- 14:47:17 exponentially harder for a 14:47:21 disabled person than it is for 14:47:24 another person. (indiscernible) 14:47:25 is not just about a pay check. 14:47:26 It's about how we're allowed to 14:47:30 live our lives. Right now our 14:47:34 foundation (indiscernible) -- 14:47:36 (unable to hear speaker) -- 14:47:41 section 504 -- live freely in 14:47:42 our community. I'm incredibly 14:47:43 grateful that Massachusetts 14:47:47 chose not to be involved in this 14:47:48 harmful law suit. Sorry, I'm a 14:47:52 little emotional, but this isn't 14:47:53 enough. I ask that 14:47:54 Massachusetts double down on 14:47:56 protecting our community by 14:47:58 aggressively defending 14:47:59 integration mandate. We need 14:48:01 the Commonwealth to use its 14:48:04 logical voice -- legal voice to 14:48:05 fight back 14:48:06 against this challenge. We 14:48:11 belong in this community. I 14:48:15 urge you to (indiscernible) 14:48:17 accountability for businesses, 14:48:19 strict living wage protections 14:48:22 and unwavering support for 14:48:23 community across the 14:48:24 Commonwealth. Thank you. 14:48:25 [ Cheers and Applause] 14:48:34 >> Ashley. 14:48:38 >> 14:48:45 Good afternoon, my name is 14:48:50 Ashley, currently in shelter. 14:48:53 I have boys 2, 6 and 12. 14:48:55 Since December 8 of last year my 14:48:57 family had to move to three 14:48:59 different shelters in less than 14:49:01 five months. We know 14:49:02 (indiscernible) unstable for 14:49:04 over 7 months. I'm here today 14:49:07 to testify on how the state 14:49:11 shelter system actively fails 14:49:18 . It 14:49:22 retailates against 14:49:26 (indiscernible) family with in 14:49:31 invisible disabilities. 14:49:32 Disability can be seen with 14:49:34 the human eye and every single 14:49:35 person on this earth is 14:49:36 different. Mental health 14:49:39 disabilities are ruthless, real 14:49:40 and (indiscernible). My brain 14:49:42 has been deeply damaged from 14:49:46 past traumas and yet those past 14:49:47 traumas do not even compare to 14:49:52 the abuse and 14:49:54 instability in the emergency 14:49:57 assistance shelter system. My 14:49:58 mental health has been the worst 14:50:01 I've ever experienced. The 14:50:02 system is -- (indiscernible). I 14:50:05 might be safer and better off in 14:50:06 a relationship because that 14:50:09 person was actually 14:50:11 (indiscernible) direct response 14:50:14 teams with, "oh, really 14:50:18 ? This will be good, right?" 14:50:24 Instead of receiving 14:50:26 trauma enforced care, each 14:50:27 placement has been worse than 14:50:33 the last. We 14:50:35 face (indiscernible) 14:50:39 infestation so severe -- bitten 14:50:41 by hands. The ants and mice 14:50:45 were at their worst, shelter 14:50:47 staff should have asked me if I 14:50:48 could just (indiscernible) or 14:50:49 pay for a hotel room until it 14:50:54 was fixed. I'm not working, 14:50:56 I'm on assistance and I have 14:50:58 little to no family support. 14:51:02 When I spoke up about mouse 14:51:04 infestation which ultimately 14:51:08 shut my unit down -- sorry -- 14:51:10 >> You're doing good. 14:51:14 >> -- 14:51:19 I lost my spot. When 14:51:21 I spoke up and complained about 14:51:23 the mouse infestation which 14:51:27 ultimately shut the unit down, 14:51:30 the non-profit executed 14:51:32 retalltory internal transfer on 14:51:34 April 21, giving me a two hour 14:51:39 verbal ultimate 14:51:43 m to pack and move across 14:51:45 multiple cities, and that was 14:51:49 with my three children that were 14:51:53 in April vacation camp. They 14:51:55 told me to go and get them 14:51:55 earlier. 14:52:07 When I explained that 14:52:09 my disabilities made this time 14:52:12 line physically and mentally 14:52:15 impossible the director stated 14:52:17 -- "well you did complain to the 14:52:18 state (indiscernible), didn't 14:52:23 you?" They forced us into our 14:52:24 current unit actively infested 14:52:29 with rats, mice, cockroaches, 14:52:31 (indiscernible). They failed to 14:52:35 provide a krib, forcing me and 14:52:37 my toddler to share a single 14:52:40 twin bed because the other 14:52:43 mattress was extremely soaked 14:52:46 with old prior occupant 14:52:47 (indiscernible) including the 14:52:50 mattress and the sheet. My two 14:52:52 year old son recently got his 14:52:54 hand stuck to a commercial glue 14:52:56 board under our coach. 14:52:59 Furthermore, they have actively 14:53:01 withheld mandatory pesticide 14:53:03 disclosure laws, ex termination 14:53:06 that I've asked for for the last 14:53:08 few months. Seven months to be 14:53:09 honest. 14:53:13 This is directly 14:53:15 triggered my family's home life 14:53:20 and my six year old's severe as 14:53:24 thma. Just yesterday when I 14:53:26 asked -- non-profit management 14:53:28 failed to accommodate my 14:53:30 disability, the supervisor 14:53:32 claimed, and I quote, "they do 14:53:34 not always receive a tenants 14:53:35 medical file from the state due 14:53:41 to HIPAA.." This is an 14:53:43 unacceptable excuse. I signed 14:53:47 a release form to ensure safety 14:53:49 and access, the state must 14:53:50 mandate that every shelter 14:53:53 provider has tenant approved ADA 14:53:54 accommodation on hand from day 14:53:57 one. If this isn't already in 14:53:58 law, I don't know why it's not 14:54:00 but it should be. Because it's 14:54:03 nearly impossible to find a free 14:54:06 housing order, I'm forced to act 14:54:08 as my own attorney. When I 14:54:11 reach out to the Disability Law 14:54:12 Center, who I believe is sitting 14:54:14 in this room today, they sent me 14:54:18 a rejection letter saying 14:54:21 the resources do not help with 14:54:22 my children (indiscernible). 14:54:29 I have been forced to 14:54:31 act as my own attorney against 14:54:35 prominent law form in court. 14:54:37 She emailed her opposition 14:54:40 papers to me exactly 18 minutes 14:54:47 before our Zoom hearing 14:54:48 intentionally exploiting my 14:54:50 anxiety and preventing me from 14:54:51 showing the judge my physical 14:54:52 evidence. I'm speaking today 14:54:54 because housing equity does not 14:54:56 exist and state providers can 14:55:01 use visible trauma to silence 14:55:03 disabled mothers and families. 14:55:06 I urge you to immediately 14:55:08 provide emergency legal backing 14:55:10 for parents forced to represent 14:55:12 themselves and shelter providers 14:55:15 who do not pass ADA compliances. 14:55:16 Thank you. 14:55:17 [ Cheers and 14:55:18 Applause] 14:55:31 >> Thank you. 14:55:35 Cody? 14:55:47 >> Good afternoon. 14:55:59 -- lately meeting the needs of 14:56:02 others are not too much to ask 14:56:07 for -- we cannot wait 14:56:12 for 14:56:16 -- (unable to hear speaker). 14:57:16 -- to change 14:57:23 minds 14:57:30 -- (unable to hear speaker). 14:58:14 -- lastly, meeting the 14:58:19 needs of others are 14:58:24 not too much to ask 14:58:33 , nor is it 14:58:39 (indiscernible), to ask for 14:58:46 technology help 14:59:00 -- into a home and 14:59:09 -- and also 14:59:16 -- (unable to hear speaker). 14:59:28 >> 14:59:28 >> 14:59:29 >> 14:59:29 >> 14:59:29 >> 14:59:31 >> 14:59:34 (unable to hear 14:59:35 speaker). 15:00:37 [ Cheers and Applause] 15:00:49 >> Maria. 15:00:51 >> Thank you, I'm very 15:00:53 grateful to be here today. I've 15:00:57 lived in North Hampton since 15:01:02 2006. I'm a college graduate. 15:01:05 (unable to hear speaker) since 15:01:09 1997. In 2013, the support of 15:01:13 MassAbility, NEFA in Springfield 15:01:14 and Social Security task plan 15:01:16 that founded lyme disease 15:01:20 resource center is a non-profit 15:01:22 organization. Over the past 25 15:01:25 years I've been both a patient 15:01:28 and long distance caregiver. My 15:01:31 grandmother, father and now my 15:01:39 mother. -- support and family 15:01:41 in custody. The challenges 15:01:44 facing disabled communities are 15:01:46 complex and (unable to hear 15:01:46 speaker). 15:01:49 Without a coordinated 15:01:50 system, the transportation, 15:01:54 housing, medical care and other 15:01:56 services, vulnerable populations 15:01:58 will continue to suffer. The 15:02:00 paper work required for programs 15:02:03 such as Mass. Health and fuel 15:02:06 assistance is overwhelming. And 15:02:10 repeatedly having to prove a 15:02:14 disability is grating. 15:02:22 It forces people 15:02:26 (indiscernible) in orderer to 15:02:27 receive support. Various 15:02:29 (indiscernible) are also a 15:02:31 problem. I experienced 15:02:33 (indiscernible) with Section 8, 15:02:37 substandard housing, landlord 15:02:39 retailation, disruption of 15:02:39 (indiscernible). 15:02:42 Locally, there are no 15:02:44 shelters that can accommodate 15:02:46 someone with a compromised 15:02:48 immune system, as I found out 15:02:50 when I was homeless for four 15:02:54 weeks. And again 15:02:59 (indiscernible). -- without 15:03:00 housing, refuse my Section 8 15:03:05 voucher, and all of the places 15:03:07 that were supposed to help in 15:03:08 the North Hampton area were not 15:03:13 helpful to me. 15:03:17 . 15:03:18 None of the case 15:03:20 workers were able to follow up 15:03:23 with this promise to my case. 15:03:24 Miscommunication at elder 15:03:26 services left me without 15:03:28 reliable help for months. A 15:03:30 former case worker missed 15:03:31 appointments and never filed my 15:03:33 request for help. At one point, 15:03:34 a nurse was sent to an address 15:03:38 that I lived 20 years ago here. 15:03:41 I've had ten home care workers 15:03:44 over the past year. Without 15:03:48 reliable home health, my health 15:03:51 declines. Transportation is 15:03:52 another problem. Transportation 15:03:56 is unreliable in western 15:04:07 Massachusetts. -- refeutsing to 15:04:09 generate and being stranded at 15:04:12 the office and refusal to honor 15:04:14 accessibility requests. I do 15:04:18 have chemical sensitivities 15:04:30 (indiscernible). People like 15:04:33 me are falling through the 15:04:35 cracks. For it wasn't for my 15:04:37 family taking no for an answer, 15:04:39 I would be homeless. This 15:04:40 doesn't only effect me 15:04:42 personally, but the over 700 15:04:46 clients served by a 15:04:48 non-profit. The situation is 15:04:49 more dire for those who lack 15:04:51 social supports who do not have 15:04:52 access to the 15:04:53 Internet. Without these 15:04:55 essential resources, individuals 15:04:58 left with limited options to 15:05:03 advocate complex systems 15:05:04 housing, supportive services 15:05:07 and financial assistance. The 15:05:10 challenges of submitting online 15:05:14 applications become 15:05:35 insurmountable. 15:05:37 The government having 15:05:43 supports needed in the state? 15:05:44 The supports I have 15:05:45 (indiscernible) and the people 15:05:49 who have supported me. 15:05:52 Without them, I would be 15:05:54 homeless. A college graduate, 15:05:59 homeless, and probably dead. 15:06:02 without the supports. Thank 15:06:06 you. For your time. 15:06:07 [ Cheers and 15:06:07 Applause] 15:06:13 >> Last but not least, 15:06:18 Melissa. 15:06:22 >> Thank you. 15:06:30 I just want to thank everyone 15:06:35 here for sharing today. I'm 15:06:37 a pediatrician and I've heard a 15:06:38 lot of similar stories about 15:06:39 housing, and I really thank you 15:06:41 for being brave enough to share 15:06:42 that. Thank you. 15:06:47 My name is Melissa, 15:06:49 and I am a pediatrician and 15:06:52 mother of a child with a 15:06:54 disability. Today I am here not 15:06:57 to speak about my own child, but 15:07:01 about the lives and experiences 15:07:04 of the disabled children I have 15:07:05 cared for in my work over the 15:07:08 last 20 years. These 15:07:11 disabilities range from physical 15:07:12 disabilities, sensory 15:07:16 disabilities, intellectual 15:07:18 disabilities, neurologic 15:07:19 disabilities, chronic health 15:07:21 conditions and mental health. 15:07:23 Each one of these can have a 15:07:25 profound impact on a child's 15:07:30 life 15:07:32 . I can describe to you the 15:07:35 heart break in the caregiver's 15:07:37 eyes when they are unable to get 15:07:38 their child what they need to be 15:07:40 able to make the world 15:07:41 accessible for them. But most 15:07:45 people in this room already 15:07:47 understand that, and all of the 15:07:49 deep emotions that come along 15:07:50 with it. 15:07:53 We need to work 15:07:56 together to ensure that no 15:07:58 family ever has to feel like 15:08:03 this again. There's one main 15:08:06 factor that determines whether 15:08:09 all disabled children get what 15:08:11 they need, and it's been 15:08:12 mentioned. That was funding. 15:08:14 There are many wonderful 15:08:18 services available in western 15:08:19 Massachusetts; however, not all 15:08:23 children can see them. The 15:08:24 determining factors for whether 15:08:28 or not a child can 15:08:33 access these services are money 15:08:34 and transportation. What I have 15:08:36 witnessed as a pediatrician is 15:08:38 that disabled children who come 15:08:40 from a place of privilege often 15:08:44 times have their needs met 15:08:46 while children who do not come 15:08:49 from a place of privilege are 15:08:54 often left behind. This is 15:08:56 unacceptable. I implore you all 15:08:59 to advocate strongly against it. 15:09:03 Every single child deserves the 15:09:05 chance to thrive. 15:09:07 Public funds are the 15:09:11 most reliable, consistent and 15:09:15 equitable way to ensure that all 15:09:16 children have their needs met. 15:09:18 In today's world, public schools 15:09:21 are the place where most 15:09:22 services are delivered to the 15:09:24 vast majority of disabled 15:09:27 children over the age of 3. We 15:09:31 need to prioritize public school 15:09:33 funding. As Dr. Martin Luther 15:09:37 King, Jr. said, moral documents. 15:09:39 There is always a choice in 15:09:41 front of you and it is critical 15:09:43 that we make the one that puts 15:09:44 people first. 15:09:48 I ask you to please, 15:09:51 whether you are a policy maker 15:09:52 yourself, whether you're in a 15:09:55 position to advocate to local, 15:09:57 state or federal officials, or 15:10:00 simply a voter, please make sure 15:10:05 you are fully informed and act 15:10:06 decisively to bring about this 15:10:10 much needed change. Please keep 15:10:14 all of our children in 15:10:15 your decision making and 15:10:19 remember that how we spend and 15:10:20 allocate our public funds often 15:10:23 make the difference between a 15:10:24 disabled child having their 15:10:26 needs met or that same child 15:10:30 having their needs left 15:10:31 unfulfilled. Everyone in this 15:10:33 room knows the difference that 15:10:35 can make in peoples' lives. 15:10:36 Thank you. 15:10:37 [ Cheers and Applause] 15:10:46 >> It's been quite an 15:10:47 afternoon. Everyone, take a 15:10:51 deep breath with me. And I 15:10:53 want to thank each and every one 15:10:55 of the people who have listened 15:10:58 so attentively, and the people 15:11:00 who have wanted to speak and 15:11:04 have shared with us. We have 15:11:06 heard commitment from people 15:11:07 who are trying to support 15:11:10 individuals with disability. We 15:11:13 have heard tremendous candor. 15:11:15 Candor is when you have the 15:11:17 courage to say the really hard 15:11:19 things. We want to know about 15:11:23 the commitment of the people 15:11:25 agencies and leaders in the 15:11:26 state. We want to know about 15:11:28 that and support that but we 15:11:29 have to listen to the really 15:11:31 hard things so that we know how 15:11:33 to move forward. 15:11:34 And I want to thank 15:11:37 everyone for what I feel is 15:11:38 filled with conscious in the 15:11:40 room. We are all here for a 15:11:40 reason. 15:11:44 And we to thank you. 15:11:47 So I am very much 15:11:50 hoping the most precious 15:11:51 resource you have is your time, 15:11:53 that you felt this gathering was 15:11:55 worthy of your time. I hope you 15:11:56 replenish your body. We still 15:12:00 have lots of snacks. And 15:12:01 replenish your spirit by 15:12:02 connecting with people at the 15:12:06 resource fair. Again, on behalf 15:12:08 of the commission, you have done 15:12:10 a tremendous service to the 15:12:10 Commonwealth today. 15:12:13 [ Cheers and Applause] 15:12:19 >> Thank you. I would 15:12:22 like to ask everybody who spoke 15:12:23 today to stay on this side. I'm 15:12:27 going to take a group photo. 15:12:29 Commissioners and audience. 15:12:34 Please join us in the front. 15:12:38 The resource area is now open at 15:12:39 3:12 p.m. Thank you all so 15:12:40 much.