Latest / Life Without a Filter: Practical Strategies for Life After 22 / Episode 20: My Day at The Arc of Massachusetts Transition Conference

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Episode 20: My Day at The Arc of Massachusetts Transition Conference · Life Without a Filter: Practical Strategies for Life After 22

• 0:01
  SPEAKER_00: Hi everyone! Parenting can be hard no matter what age or stage you are in.
• 0:07
  SPEAKER_00: But what happens when your child becomes an adult and they will need a lifetime of support?
• 0:12
  SPEAKER_00: I'm your host Cheryl and welcome to the podcast Life Without a Filter.
• 0:17
  SPEAKER_00: My goal is to share our not so unique, maybe specific journey as a family navigating the various special education transition services and creating our Sun's self-directed adult program.
• 0:31
  SPEAKER_00: While we don't have all the answers, our hope is that you can learn from our experiences to make your own path a bit smoother.
• 0:39
  SPEAKER_00: We'll also have some special guests providing resources and sharing their personal stories of navigating within the adult disability services world.
• 0:48
  SPEAKER_00: Let's embark on this journey together.
• 1:03
  SPEAKER_00: Last Saturday, I was able to attend and present at the Ark of Massachusetts Transition Conference.
• 1:10
  SPEAKER_00: And this year it was called The Transition Journeys Tools for Today Hope for Tomorrow.
• 1:18
  SPEAKER_00: And I just wanted to do this week an overview of some of the conference sessions that I attended.
• 1:28
  SPEAKER_00: During the conference, they had 24 different breakout sessions that you could choose from.
• 1:33
  SPEAKER_00: So obviously, I could not be in all of them at all of the times.
• 1:38
  SPEAKER_00: So there were three scheduled breakout sessions, and for one of them I actually presented in.
• 1:43
  SPEAKER_00: So in this review, I'm going to go over the two sessions that I did attend, give you a little sneak peek about the session that I co-presented in, and also go over some of the main presentations that happened for all of the participants.
• 2:03
  SPEAKER_00: So let's get started.
• 2:05
  SPEAKER_00: All right.
• 2:05
  SPEAKER_00: So if you're watching this on YouTube, you're going to see me looking down a lot.
• 2:09
  SPEAKER_00: It's because I have the agenda and I have all of the sessions and I have my notes.
• 2:15
  SPEAKER_00: So I'm going to be looking down at my paper a lot.
• 2:18
  SPEAKER_00: So the day started out with a with everyone meeting together in the main ballroom for the program welcome and a panel session as the first session.
• 2:32
  SPEAKER_00: During the welcome program, the first person that spoke was Mauri Sullivan, who is the CEO of the Ark of Massachusetts.
• 2:41
  SPEAKER_00: And she gave an overview of the conference, what people should expect that day, and over and also an overview of what the Ark of Massachusetts has worked on the past year and what they are currently working on this year as far as advocacy goals.
• 3:01
  SPEAKER_00: And looking back at my notes, the four pieces of information that I wrote and put little stars next to was first that she was hoping the goal of the conference was to provide not only information but hope by highlighting people with lived experiences so that parents and caregivers and professionals that were attending the conference could learn from each other.
• 3:30
  SPEAKER_00: The second what goal of the conference was to make connections.
• 3:35
  SPEAKER_00: And I did find that was so helpful, even though Elle has been out of public school for three years and we are technically considered transitioned into the adult service world.
• 3:47
  SPEAKER_00: There are still changes that are occurring within that programming.
• 3:50
  SPEAKER_00: So I found it important for me to make connections with other parents who have either children or they are caregiving for young adults.
• 4:01
  SPEAKER_00: I also liked connecting with those families that I was sitting at the lunch table with whose children were between the ages of 15 and 21.
• 4:11
  SPEAKER_00: So really in the trenches of it, and that I was able to provide our parent perspective on going through that process.
• 4:21
  SPEAKER_00: As I said earlier, she did talk a lot about the advocacy and that, you know, one of the big things that they are seeing is that funding sources are at risk, but the community needs are continuing to grow.
• 4:35
  SPEAKER_00: The number of people diagnosed is increasing, therefore the number of people that need services are increasing, but the funding is not increasing at that rate.
• 4:46
  SPEAKER_00: And also the number of service providers that are available to accommodate those needs.
• 4:51
  SPEAKER_00: So she did touch upon that.
• 4:54
  SPEAKER_00: One of the things that she also said was if you come out of nothing at all in this process, she said the big thing to go back and ask your school team is has a 688 referral been completed.
• 5:08
  SPEAKER_00: And there were two people at the table that during this time that I was sitting with, and they looked at me and they said, What's a 688 referral?
• 5:17
  SPEAKER_00: So I gave them my website and said, You need to go here and you need to check out the blog post that I've written about it and the podcast that I've done about it and the YouTube video that I did that talks all about what the 688 referral process is, how to go about it, and why it's so important.
• 5:37
  SPEAKER_00: After Maura spoke, she invited Betsy Johnson to come on stage and she read a poem called Turning 22.
• 5:43
  SPEAKER_00: We weren't given a copy of that poem.
• 5:46
  SPEAKER_00: I'm really hoping that when the conference releases the handouts for all of the sessions, that they do put her poem on there.
• 5:55
  SPEAKER_00: And it was a really nice parent perspective on what the challenges are as you're approaching your child turning 22 and what the world of 22 can look like after that.
• 6:06
  SPEAKER_00: It was very moving.
• 6:07
  SPEAKER_00: It was a great way to start off the conference.
• 6:12
  SPEAKER_00: After Betsy spoke, Sarah Peterson, who is the current commissioner at DDS, she came on stage and she gave a welcome and an overview of what's going on in DDS.
• 6:26
  SPEAKER_00: And some of the takeaways that I took down in my notes were remember that success does not look the same for each person.
• 6:33
  SPEAKER_00: So really focusing on that individualization of your person's adult programming needs.
• 6:41
  SPEAKER_00: One person may need a dayhab support, one person may be need a CBDS program, one family may choose participant directed or agency with choice.
• 6:52
  SPEAKER_00: And even within those categories, your person's experience is going to be different.
• 6:58
  SPEAKER_00: And I do remember when we were looking at CBDS programs, something that one of my parent friends said to me was, it's great that you're going and talking to all of us, asking us what our opinions are, but you really need to look at what's important for L.
• 7:13
  SPEAKER_00: Because while this program may be great for my daughter or son and it's working for them and their needs, you may walk in and say, Yeah, this isn't for me.
• 7:21
  SPEAKER_00: And there might be a program that they went and looked at that said, absolutely not, that we went and looked at and said, Oh my goodness, I think this would be a great fit.
• 7:29
  SPEAKER_00: So it was a nice reminder that even though there are these specific categories, for lack of a better word, that you go into once you go into adult services, you really do need to look at your individual person to know what is the right choice for them.
• 7:48
  SPEAKER_00: The other thing that she spoke on was that transition needs to be more than services.
• 7:54
  SPEAKER_00: It needs to be about creating a good life.
• 7:56
  SPEAKER_00: And this was a callback to using charting the life course as a person-centered planning tool.
• 8:03
  SPEAKER_00: That is one of their taglines within that person-centered plan is what is your vision for a good life?
• 8:09
  SPEAKER_00: And this program, Charting the Life Course, is something that the Ark of Massachusetts has been advocating for for at least 10 years, maybe a little bit longer.
• 8:20
  SPEAKER_00: So she did hearken back to that using those person-centered plans.
• 8:24
  SPEAKER_00: And when you are doing the Charting the Life course, it really does look at not only what services, meaning, does your is your person going to get services through DDS, through MassHealth?
• 8:40
  SPEAKER_00: Are they going to use resources for Mass Abilities?
• 8:44
  SPEAKER_00: It's not just about the services, it's about all of the other areas that are in the integrated STAR and how services are just one small part of that.
• 8:56
  SPEAKER_00: One thing that she said that I really appreciated was that the information from DDS needs to be easier to find, easier to understand, and in a language families can understand.
• 9:08
  SPEAKER_00: And, you know, they did also say, again, more effective communication and coordination between the different adult agencies, which I think is so important.
• 9:17
  SPEAKER_00: Going back to that, you know, services should not be at the center of it, but the services all kind of work together, but they don't all talk to each other.
• 9:26
  SPEAKER_00: The other thing that she said was that they started a new Turning 22 commission, which started this summer, which she did not go into specific detail about who is on this commission.
• 9:40
  SPEAKER_00: She did say that there will be some self-advocates and families that are part of the stakeholders.
• 9:46
  SPEAKER_00: And I haven't really gone down the rabbit hole yet of what the Turning 22 commission is, but I will definitely be doing that and getting back to you and sharing what I hear from that.
• 9:58
  SPEAKER_00: I think again, it's going back to people always think of turning 22 as that cliff.
• 10:03
  SPEAKER_00: There's so many stories about when you heat hit the, you know, that age 22 cliff and you fall off of it.
• 10:10
  SPEAKER_00: I appreciate again that they have heard that story so many times.
• 10:14
  SPEAKER_00: They're hearing families that are truly struggling with what happens once you turn 22.
• 10:20
  SPEAKER_00: And I'm hopeful that this commission will, again, provide clearer understanding, information so that families can feel empowered and that the adults aging out into the system can be better self-advocates for themselves on what they want their adults' life to look at.
• 10:39
  SPEAKER_00: Because the reality is we're so focused as families, or I shouldn't say we all are.
• 10:44
  SPEAKER_00: I was so focused on that, you know, when when we were in school, and the reality is is, you know, the good Lord willing, he will spend more time out of school than he ever did in school.
• 10:56
  SPEAKER_00: But there seems to be so many resources and supports for while you're in school, yet for the amount of time that you are in the real world, those supports are less.
• 11:07
  SPEAKER_00: So how can we make a shift towards that?
• 11:11
  SPEAKER_00: So after that, the next the first official session was a parent panel that was in the ballroom, so it was for everyone in the room.
• 11:20
  SPEAKER_00: And it was titled What I Wish I Knew About Transition.
• 11:24
  SPEAKER_00: So there were three parents that were on the panel, and there was a moderator who was asking questions, and the ages ranged from 21 to 30.
• 11:38
  SPEAKER_00: So we were talking to someone who was just about to be aging out, someone who has been out for a couple of years, and someone who has been out for quite a number of years.
• 11:48
  SPEAKER_00: So some of the takeaways that I took from the parent panel was that one of the parents who her son was a junior in college, and her recommendation was that we need to start treating our kids like adults when they turn 18, regardless of what their disability is.
• 12:09
  SPEAKER_00: And she said one of the things that she started to do was recognize that she needed to move from being the director to a supporter or a coaching role.
• 12:22
  SPEAKER_00: And I think that that is so important, but as a parent, it's really hard to do at times, and I am guilty of that.
• 12:30
  SPEAKER_00: It's very easy to always organically organically slip back into that parent-child mode.
• 12:38
  SPEAKER_00: But I really like how she phrased it from you're moving from being the director of their programming and their advocacy to being that supporter and coach.
• 12:48
  SPEAKER_00: And obviously, again, all of this is going to depend on your child and their needs.
• 12:54
  SPEAKER_00: And that led into the next thing that she said that we need to think what independence really means.
• 13:01
  SPEAKER_00: And it's a not, and independence is not about eliminating supports, but about creating your supportive webs.
• 13:08
  SPEAKER_00: And I've talked about this before when I've done my sessions on person-centered planning, and we are looking at the three pillars of transition and um independent life skills.
• 13:18
  SPEAKER_00: And we're so focused on independence, and it goes automatically usually to that definition of independence means doing it by yourself.
• 13:26
  SPEAKER_00: But when you really look at your lives, there, yes, there are certain things that we do do by ourselves, but then there are other parts of our lives where we do have a lot of interdependence, where we have other people in our family or in our jobs or in our community that we are interdependent on and able to do a task or a skill or um do a certain job.
• 13:47
  SPEAKER_00: So I liked how she said we need to rethink what it really means and that it might not be my person can do this task completely, 100% on their own, but maybe they can do substeps of the final question from the panel was what is your best piece of advice that you would give to your families?
• 14:10
  SPEAKER_00: And there were seven that I wrote down.
• 14:13
  SPEAKER_00: So the first one was be patient with the process.
• 14:16
  SPEAKER_00: Again, I think as parents, it's really hard not to be patient, especially when things seem to be taking so long, especially when they're about to age out of school and you still may not have heard yet.
• 14:27
  SPEAKER_00: Do we have a spot?
• 14:28
  SPEAKER_00: Do we not have a spot?
• 14:30
  SPEAKER_00: Do we have funding?
• 14:31
  SPEAKER_00: How much money are we getting?
• 14:33
  SPEAKER_00: What's the transportation going to be like?
• 14:35
  SPEAKER_00: I get it.
• 14:36
  SPEAKER_00: It's really hard to be patient.
• 14:38
  SPEAKER_00: But that was the first thing that one of the parents said was be patient with the process.
• 14:42
  SPEAKER_00: The second was ask for help.
• 14:44
  SPEAKER_00: Again, something that I found really hard to do, especially when your core group of friends are all in the same boat as you.
• 14:51
  SPEAKER_00: It's like I hate asking people for help when I know that they're struggling.
• 14:54
  SPEAKER_00: But we also found that once we started asking each other for help, as long as no one was taking advantage of the help, it really was helpful.
• 15:02
  SPEAKER_00: So I do like that.
• 15:04
  SPEAKER_00: Ask for help.
• 15:05
  SPEAKER_00: Um, the third piece was start where you are.
• 15:08
  SPEAKER_00: Again, in this conference, it really highlighted that we were sitting at tables with people that were at all different ages and stages.
• 15:17
  SPEAKER_00: And, you know, if you have a child who's 17 and you're talking to someone who's 21, yes, they're going to be further ahead of the process than you are, but they should be because they've been doing it for longer than you have.
• 15:29
  SPEAKER_00: So don't get so caught up on what you haven't done.
• 15:32
  SPEAKER_00: Start where you are and go through those checklists and make progress every day.
• 15:38
  SPEAKER_00: And that was the other thing.
• 15:40
  SPEAKER_00: Don't compare your progress and your child's plan.
• 15:45
  SPEAKER_00: Um, so basically, again, don't compare where you are in the process because again, each child is different.
• 15:52
  SPEAKER_00: Their path to post-22 may be different.
• 15:55
  SPEAKER_00: So depending on what they're doing, it may have more or less steps than someone else, um, another parent that you're talking to.
• 16:04
  SPEAKER_00: And again, don't compare your child's plan.
• 16:06
  SPEAKER_00: It kind of goes back to earlier about there might be a program that you are so excited for your child to be attending, and you might meet another parent that says, Oh my gosh, I visited that program, I did not like it at all.
• 16:19
  SPEAKER_00: Well, okay.
• 16:22
  SPEAKER_00: And they have their reasons for not liking it, but you have your reasons for liking it.
• 16:26
  SPEAKER_00: So you really need to push away that comparison and really focus on what is the best program for your child, what is the best place for them.
• 16:36
  SPEAKER_00: Um, number five, make connections.
• 16:38
  SPEAKER_00: Again, hearkening back to what Morris Sullivan was.
• 16:41
  SPEAKER_00: Continue to make those connections with other families, whether they're in the same timeline as you, and even if they're a couple of years ahead of you.
• 16:48
  SPEAKER_00: I know I've said numerous times, I have been so blessed that I just organically have become really close friends with people whose kids are not only Elle's age, but also one to five years ahead of him.
• 17:02
  SPEAKER_00: So I've been able to hear, you know, what they're going through and talking about.
• 17:06
  SPEAKER_00: Like case in point, Elle just turned 25.
• 17:09
  SPEAKER_00: We need to start the process of um allowing him to stay on our private health insurance.
• 17:16
  SPEAKER_00: I was just talking to two of my friends about it and they were like, oh yeah, it's a really simple process.
• 17:20
  SPEAKER_00: Do this, this, this, this, and this.
• 17:21
  SPEAKER_00: Here are the resources for it.
• 17:23
  SPEAKER_00: Great.
• 17:23
  SPEAKER_00: So something that I woke literally woke up a week after L turned 25 and said, Oh my goodness, I have to start this.
• 17:30
  SPEAKER_00: And I thought I was behind the eight ball a week after he turned 25.
• 17:34
  SPEAKER_00: And they were able to walk me off of the ledge and say, You're all set.
• 17:38
  SPEAKER_00: This is what you need to do.
• 17:40
  SPEAKER_00: Don't wait till a week before he turns 26, but you're okay.
• 17:44
  SPEAKER_00: So, really, I think making those connections is so key.
• 17:49
  SPEAKER_00: Um, they also said to start early.
• 17:53
  SPEAKER_00: There is a lot to learn as far as transition planning goes, and there's a lot that you'll continue to learn post-22.
• 17:59
  SPEAKER_00: So I think they were primarily talking about, you know, a lot of times people don't start thinking about that transition process until their child is 17 or 18 years old.
• 18:09
  SPEAKER_00: And depending on when they're scheduled to age out of school, it might, it might be, I don't want to say too late, but if they're aging out at 18 or 19 and you're starting at 17, you've got a lot that you have to do.
• 18:21
  SPEAKER_00: Um, according to IDEA, transition um planning officially or legally starts at age 16 in Massachusetts.
• 18:29
  SPEAKER_00: It starts at age 14 or even sooner.
• 18:31
  SPEAKER_00: So if you're listening to this in Massachusetts, you really should be starting at 14 looking at those transition planning checklists.
• 18:39
  SPEAKER_00: If you're not sure where to even look at that, I'm gonna put in the show notes.
• 18:43
  SPEAKER_00: I've done previous blog posts and podcasts on a bunch of different transition planning checklists.
• 18:50
  SPEAKER_00: Find one that works for you, use all of them, use one of them, but start.
• 18:55
  SPEAKER_00: And then the last thing was do your research and do that by attending conferences, attending webinars.
• 19:01
  SPEAKER_00: Reach out to DDS or the agency that was identified in the 688 referral and definitely find other families that are going through the journey.
• 19:12
  SPEAKER_00: Again, we want to find other families, we want to make connections, but we want to make sure that we're not comparing our progress and our child's plan also.
• 19:20
  SPEAKER_00: So it is a balancing act.
• 19:24
  SPEAKER_00: Next, it was time for the first breakout session.
• 19:27
  SPEAKER_00: I attended Navigating the Healthcare Transition: Practical Strategies to Improve Lifelong Care.
• 19:34
  SPEAKER_00: And that was put on by Maura Sullivan, the CEO of the ARC, Dr.
• 19:38
  SPEAKER_00: Jill Panetta, who is at the Lurie Center, and Terry Ferrell, who is at the Insurance Resource Center for Autism and Behavioral Health.
• 19:48
  SPEAKER_00: I attended the session because, as you heard me say earlier, once your adult turns 26, they are no longer allowed to stay on private health insurance in Massachusetts.
• 19:59
  SPEAKER_00: That is something that we are going through right now.
• 20:01
  SPEAKER_00: So I definitely wanted to attend that session.
• 20:05
  SPEAKER_00: Each of the panelists talked about something a little different.
• 20:08
  SPEAKER_00: So Maura Sullivan was primarily talking about the state of healthcare for people with disabilities.
• 20:15
  SPEAKER_00: She went over a lot of statistics as far as access to doctors, access to appropriate diagnosis, how sometimes the person's diagnosis might be masking some of the symptoms.
• 20:31
  SPEAKER_00: And she really focused on one of the ARCS initiatives called Operation House Call.
• 20:37
  SPEAKER_00: What I thought was very interesting is she said that most medical schools will spend a total of 11 minutes on training their doctors on working with patients with disabilities.
• 20:52
  SPEAKER_00: And in Massachusetts, they are currently getting six hours now of training through Operation House call.
• 20:58
  SPEAKER_00: So I will put a link in the show notes because they um she was showing their website and resources about the program.
• 21:08
  SPEAKER_00: So I thought it was very interesting that she was able to talk about um, you know, what they as an organization are doing.
• 21:18
  SPEAKER_00: And that, you know, again, recognizing that it is very difficult to find a primary care physician for an adult with disabilities.
• 21:27
  SPEAKER_00: Um, the big takeaway from that part of the session was to make sure you do this early.
• 21:34
  SPEAKER_00: Ask your pediatrician when they will require your child to transition out of pediatric services.
• 21:40
  SPEAKER_00: And it's really going to depend on the pediatrician, what their practice policy is, and also that some pediatric um doctors, their licenses may end at age 21.
• 21:55
  SPEAKER_00: So they are no longer legally able to see patients post 21.
• 21:59
  SPEAKER_00: Other types.
• 22:00
  SPEAKER_00: Their pediatric license may go up to 25.
• 22:03
  SPEAKER_00: So that's why there might be a disparity between you had to go off at 21.
• 22:07
  SPEAKER_00: Like my kids had to be out of their pediatrician's office by 21.
• 22:12
  SPEAKER_00: And my friend, their child was able to stay till 25.
• 22:15
  SPEAKER_00: It all has to do with your pediatric licensing.
• 22:19
  SPEAKER_00: So, and you don't want to start that process at six months before they turn 21.
• 22:27
  SPEAKER_00: You really, because a lot of places, at least in our area, there were wait lists.
• 22:32
  SPEAKER_00: So we started this process about two years before they turned 21.
• 22:37
  SPEAKER_00: We got on some wait lists, and luckily we were able to get off of one six months before L turned 21.
• 22:44
  SPEAKER_00: And we at that point just transitioned into that primary care's office.
• 22:49
  SPEAKER_00: We we were able to get out at that point.
• 22:52
  SPEAKER_00: But it we were still on wait list for some other ones, and we're juggling a lot of stuff during that time, especially um if they are transitioning out of school, maybe before 22.
• 23:05
  SPEAKER_00: So I thought that was key was ask your pediatrician what time and make sure you're giving yourself enough time.
• 23:12
  SPEAKER_00: Because if there was like a year-long wait list and they're two years out, you get on that wait list.
• 23:18
  SPEAKER_00: And if they get off of the wait list before they need to get out of the pediatrician's office, just switch over to the practice.
• 23:25
  SPEAKER_00: Um, the second part of the session was done, like I said, by Dr.
• 23:28
  SPEAKER_00: Jill Paneda from the Lurie Center, and she had some really great information about once you're actually in the doctor's office.
• 23:41
  SPEAKER_00: And I will share in the show notes their website where she has provided for not only patients of the Lurie Center, but for anyone to go on to right now, um, free resources.
• 23:56
  SPEAKER_00: They have um a sheet, which is a patient care plan sheet that you fill in so it has information about the person and their health requirements and needs, which she said is very important as they're transitioning from a pediatrician into adult services.
• 24:14
  SPEAKER_00: She also had a lot of social stories, and it wasn't just the typical, you know, if I need to get blood drawn or if I need a vaccine.
• 24:25
  SPEAKER_00: It was if you're going for a colonoscopy, if you're going for a mammogram.
• 24:30
  SPEAKER_00: So she was really addressing adult healthcare needs in there.
• 24:34
  SPEAKER_00: And again, in on their website, she said those are available for free to anybody.
• 24:40
  SPEAKER_00: And one of the things that she also said, which I wrote in my notes, was asking how you can incorporate any health goals within the IEP, especially if the student has complex complex medical needs as part of their transition planning.
• 24:54
  SPEAKER_00: So I thought that was a good um recommendation.
• 24:58
  SPEAKER_00: Um, and then Terry Farrell talked about the um adult insurance guidelines.
• 25:03
  SPEAKER_00: Unfortunately, she only had 10 minutes to speak.
• 25:06
  SPEAKER_00: So, you know, one of my feedbacks was that it when you do a panel, it's great because you get so much information, but it's really hard to get all of the information in there.
• 25:17
  SPEAKER_00: But luckily, she did have um at her table, she had this handout.
• 25:22
  SPEAKER_00: It says insurance can be complicated.
• 25:25
  SPEAKER_00: We are here to help.
• 25:26
  SPEAKER_00: And under the coverage across the lifespan, um it has the um all of the steps that you need to do in terms of um what you need to do once your person turns 22 and is approaching 26.
• 25:46
  SPEAKER_00: So um she did talk a little bit about how um if if your if your child is on SSI as a minor versus if they apply for SSI as an adult, as a household of one, how mass health will um how mass health eligibility comes about, whether they're a minor or if they are getting it over 18 either through SSI or if they are not on SSI and are just applying for MassHealth on their own.
• 26:21
  SPEAKER_00: And one of the key things that she put that I did not realize, and again, this was because we went through the SSI process.
• 26:29
  SPEAKER_00: He was approved for it, so MassHealth came with SSI.
• 26:34
  SPEAKER_00: But that once you turn 18, Social Security no longer looks at the family assets.
• 26:39
  SPEAKER_00: You're now a person of one.
• 26:41
  SPEAKER_00: So 18 and younger, they're gonna look at the household assets.
• 26:44
  SPEAKER_00: Um, so depending on your household income, your minor child may not be eligible for those um services.
• 26:51
  SPEAKER_00: Once they turn 18, they become a legal adult, regardless of their guardianship status, and they now become a household of one.
• 26:57
  SPEAKER_00: So they're not looking at family assets.
• 27:01
  SPEAKER_00: But because they're getting in, but for MassHealth, MassHealth has it at the age of 19.
• 27:09
  SPEAKER_00: So if you were to apply for MassHealth on your own at 18, even though you're considered a legal adult, MassHealth is still going to look at family assets once they turn 19, they will just look at them as a household of one.
• 27:26
  SPEAKER_00: But if your child has applied for SSI at 18, gets SSI at 18, they are able to then automatically get MassHealth and don't have to wait until they're 19.
• 27:39
  SPEAKER_00: So I thought that was interesting.
• 27:41
  SPEAKER_00: That was something I didn't really know about because again, we went in, we got into MassHealth through the SSI door, not through the individual MassHealth door.
• 27:49
  SPEAKER_00: And then she said, um, starting at ages 24 and 25, learn what is necessary to keep your young adult on a parent's um policy, and you need to apply before their 26th birthday, not when they turn 26, because once they've turned 26, usually the door is pretty much closed on that.
• 28:07
  SPEAKER_00: So you do need to make sure that all of the paperwork and the approval is done before their 26th birthday.
• 28:15
  SPEAKER_00: So um unfortunately, the ones the one part of the session that I really wanted to focus on was the 10 minutes.
• 28:21
  SPEAKER_00: But like I said, I went to her.
• 28:22
  SPEAKER_00: She did have a table, they did have exhibitors, and she did have a table, and she had she had this, and she had a handout, which was called Options for Options After Age 22.
• 28:34
  SPEAKER_00: And I will put a link to this because she said it's all on her website.
• 28:39
  SPEAKER_00: I will do that.
• 28:41
  SPEAKER_00: After that session, we all came back together and we had lunch in the ballroom, and they had two speakers.
• 28:49
  SPEAKER_00: They had someone from Plan who talked about the different special needs trusts.
• 28:53
  SPEAKER_00: And I didn't take any notes on that, but I will put a link to Plan's um website.
• 28:59
  SPEAKER_00: And they were primarily talking about what it the definition of what a special needs trust is, um, the different kinds of special needs trusts you can have.
• 29:08
  SPEAKER_00: So first person, um, uh third person and pools trust and went over what an organization like Plan could do.
• 29:19
  SPEAKER_00: So I will put a link to their website, which has a lot of information on there.
• 29:23
  SPEAKER_00: Again, I'm not a lawyer, I'm not a financial planner.
• 29:27
  SPEAKER_00: Um, so I'm not gonna go into depth on that.
• 29:29
  SPEAKER_00: I will just share that resource with you.
• 29:31
  SPEAKER_00: Then they had a panel of three young adults.
• 29:35
  SPEAKER_00: So the opening session was three parents, and then the lunch session was three um young adults who were talking about what their life has been like post-school.
• 29:46
  SPEAKER_00: And I thought that was great for parents to hear.
• 29:49
  SPEAKER_00: Um, again, going back to that theme of we need we spend so much time hearing about how hard it is, how difficult it is.
• 29:56
  SPEAKER_00: And it is, it is hard, it is difficult, you know.
• 29:59
  SPEAKER_00: And we're not, I'm not sugarcoating any of that, but it is nice every once in a while to hear of those success stories.
• 30:07
  SPEAKER_00: And these were three different um pathways that these adults had taken.
• 30:12
  SPEAKER_00: So it was also nice to hear, again, that variety in that um it wasn't three people sitting on the panel that were all doing the same thing.
• 30:20
  SPEAKER_00: They were all doing different um things, but they were doing the things that were important to them that were part of their person-centered plan.
• 30:27
  SPEAKER_00: So, again, going back to you know, it's very important to make those connections, hear other people's stories, but please don't compare yourself to an other people's plans and think that their plan has to be your plan.
• 30:47
  SPEAKER_00: Um, the next session after lunch was um the session that I co-presented with.
• 30:53
  SPEAKER_00: So it was titled Assistive Technology Tools for Independence.
• 30:56
  SPEAKER_00: It was myself and Ariba Khan, who is the director of assistive technology at the Northeast Arc.
• 31:03
  SPEAKER_00: And we split our session up into two segments.
• 31:06
  SPEAKER_00: Um, the first part of it was how does assistive technology look in the adult service world?
• 31:14
  SPEAKER_00: So I touched upon, since I primarily work with students K through 12 plus, I gave an overview of while you're in the public school system, this is what assistive technology services look like, this is what an assistive technology evaluation looks like.
• 31:29
  SPEAKER_00: Then Ariba came in and said, once you went to the adult service world, this is the procedures now to how to ask for an assistive technology evaluation, what that looks like, and what it covers.
• 31:42
  SPEAKER_00: She also touched upon um remote supports.
• 31:46
  SPEAKER_00: So for people who are living um either independently, um, there may be some families that they may be living in the home and are trialing this to get them ready for independent living.
• 31:57
  SPEAKER_00: But um basically, it is a program where the individual can reach out to a remote support person, it's a company, and they can reach out to them in case of emergencies or if they need help with something.
• 32:14
  SPEAKER_00: So it's again, it's a way we're looking at independence, but they're still interdependent on the remote supports.
• 32:20
  SPEAKER_00: And I can put links in the show notes of those resources that she had.
• 32:26
  SPEAKER_00: And then my section was looking at assistive technology tools that can be used out in the real world.
• 32:32
  SPEAKER_00: So, you know, I started off with what do we already carry around in our pocket?
• 32:37
  SPEAKER_00: A lot of our young adults are carrying around phones and iPads.
• 32:40
  SPEAKER_00: So, what are the different accessibility features on there?
• 32:43
  SPEAKER_00: And what are the tools that they can use either in the home, in the community, or in their place of employment, whether that be um volunteer or paid employment, or if they are doing continuing education?
• 32:56
  SPEAKER_00: So we looked at assistive technology tools to support that.
• 32:59
  SPEAKER_00: We also looked at different technology tools to support um accessing the activities of daily living, which are always a big piece.
• 33:08
  SPEAKER_00: Um, and again, this is a way that um kind of like how in the session for um the healthcare, what are some IEP goals that maybe we can write into?
• 33:19
  SPEAKER_00: What are some goals we can write into the IEP to address those health goals?
• 33:23
  SPEAKER_00: Well, what are some of the IEP goals we can create to address ADLs?
• 33:28
  SPEAKER_00: And are there any assistive technology supports that that person can utilize?
• 33:33
  SPEAKER_00: And anything that we can start doing in that classroom setting can then be generalized in the home, which then can be generalized going out into the community.
• 33:42
  SPEAKER_00: So anytime we can introduce assistive technology tools that are important for our person outside of the building, and it's not just about AT is not just about academics, AT is not just about communication, um, AT is about so much more.
• 33:57
  SPEAKER_00: So, how can we look at it through the lens of how can we help our students while they're in school to get them ready for when they are walking out the door?
• 34:06
  SPEAKER_00: And isn't that what transition planning is all about?
• 34:09
  SPEAKER_00: So um, I did I do have resources from previous blog posts and podcasts, and I'll be doing more of them, and I'll put a link to my um assistive technology YouTube channel, which has um videos and tutorials on lots of different things there, so you can always go take a look at that.
• 34:28
  SPEAKER_00: And the last session that I went to was called Real Challenges and Rewards of the Self-Direction Service Model.
• 34:34
  SPEAKER_00: So this was another panel.
• 34:36
  SPEAKER_00: It was three parents and one young adult, and they were talking about how they were utilizing the self-direction programming model.
• 34:46
  SPEAKER_00: Some were doing participant-directed programming, some of them were doing agency with choice.
• 34:51
  SPEAKER_00: So it was nice to hear their reflections on that.
• 34:54
  SPEAKER_00: They were able to give an overview of what their persons, like a typical day, looks like, and all of them were different.
• 35:00
  SPEAKER_00: Again, it was nice to see that within the self-directed model, it really was self-directed.
• 35:06
  SPEAKER_00: And primarily, you know, they were talking about the challenges that they faced as far as um budgeting, making sure that they had a budget that would support their persons and what their needs were, either staffing or programming, um, paying for programming needs.
• 35:23
  SPEAKER_00: Um, they did talk about staffing, you know, the need to find good staff and being able to pay staff and work with them so that they stay, and also really focusing on what does that person want to do?
• 35:38
  SPEAKER_00: Um, and they all spoke about using person-centered planning models in order to find out what does my day need to look like.
• 35:46
  SPEAKER_00: Um then the last half was a lot of questions and answers, and a lot of them were about, you know, how, you know, how do you apply for self-directed?
• 35:56
  SPEAKER_00: How do you come up with a budget amount?
• 35:58
  SPEAKER_00: How do you find staff?
• 36:01
  SPEAKER_00: Um, these are all things that I also talk about, or you know, I either have already talked about or will be talking about in the blog and podcast.
• 36:10
  SPEAKER_00: So you can always go back, just go back to the all of the episodes and look at the ones that you think might be helpful for you.
• 36:18
  SPEAKER_00: Um so um, like I said at the beginning, there were a lot of sessions and we there were only three, you know, session, there were only um three session workshop times.
• 36:31
  SPEAKER_00: So one of the things I do really like about the ARC is that they did have all of the presenters upload their handouts so that post-conference, all of the attendees we can get access to the handouts.
• 36:45
  SPEAKER_00: So even though we weren't able to hear directly what people were saying, we will be able to go back and look through the resources and you know, hopefully they will have provided, you know, their contact information so that if you have questions, you can go back and ask them, you know, dur at the end of our session, both Rareba and I said, you know, uh when you get the handouts, have any questions, please reach out to us because we know that, especially in a conference, you get bombarded with so much information, you're you're drinking from a fire hose a lot of the time.
• 37:19
  SPEAKER_00: And two weeks later you might be like, oh my gosh, I had this question.
• 37:23
  SPEAKER_00: You know, please feel definitely for us, please feel free to reach out to us.
• 37:28
  SPEAKER_00: But I would also encourage you, I have never been to a conference where I have reached out to someone after and they have been upset or unwilling to answer the questions.
• 37:38
  SPEAKER_00: Nine times, you know, nine times out of ten, they're always so excited.
• 37:41
  SPEAKER_00: Um, you know, sometimes they do a full-time job, so they might be really busy and might not be able to get back to you right away.
• 37:47
  SPEAKER_00: But I've never had anybody say, you know, no, you can't ask me a question.
• 37:52
  SPEAKER_00: So I think, you know, people do these presentations because they want to share their knowledge and they want people to continue to learn and grow.
• 38:01
  SPEAKER_00: And they are usually always very welcoming of questions that happen after the fact, even if it's a year after the fact.
• 38:08
  SPEAKER_00: I've had people reach out to me a year or two after they've seen one of my sessions.
• 38:12
  SPEAKER_00: And I think that's great.
• 38:13
  SPEAKER_00: You know, when you have the question, if you have a resource, you know, reach out and ask them.
• 38:20
  SPEAKER_00: So um I overall, it was a great conference.
• 38:26
  SPEAKER_00: Um, I think that, you know, I like I said, you know, that first session about health insurance, that's something that I was still going through.
• 38:34
  SPEAKER_00: Um, the other thing that they they did have lots of vendors.
• 38:37
  SPEAKER_00: I didn't really touch upon that.
• 38:38
  SPEAKER_00: They did have a lot of vendors there.
• 38:40
  SPEAKER_00: And I should, as I say, vendors, exhibitors, um, you know, people from CBDS programs to lawyers to um all of the cer um almost all of the service agencies were there also.
• 38:52
  SPEAKER_00: So I didn't really touch upon that because that could be a whole other hour program talking about that.
• 38:57
  SPEAKER_00: And um I I have to, but it was really nice to reconnect with some people that I hadn't seen in a year or two.
• 39:04
  SPEAKER_00: So that was really nice.
• 39:06
  SPEAKER_00: But I really, I really enjoyed, you know, I enjoyed everything.
• 39:10
  SPEAKER_00: I think my my favorite part was the conversations that I had um either first thing in the morning while we were waiting for the presentations to begin in the ballroom, and during lunch while we were having lunch and waiting, just talking to the other families there, you know, where they were in their journey, what their um questions and concerns were.
• 39:30
  SPEAKER_00: You know, hopefully, as the the old person in the group, uh hopefully I was able to provide some information to them, paying it forward just like people did for me when I sat in that chair when my son was 17.
• 39:42
  SPEAKER_00: So um usually the Aukra Massachusetts, they do this every other year.
• 39:46
  SPEAKER_00: So it's not an every year conference.
• 39:48
  SPEAKER_00: So the next one should be scheduled for uh 2028.
• 39:52
  SPEAKER_00: So I would definitely encourage that if you have a young person, ages 14 and up, that you definitely attend this in 2028.
• 40:05
  SPEAKER_00: And in the meantime, if you have any questions specific about transition planning, again, check out my blog and podcast, see if I have any past episodes on it.
• 40:15
  SPEAKER_00: If you have a question, you can also reach out to me.
• 40:18
  SPEAKER_00: I'll put a link in the show notes with a Google form that you can reach out if you have any questions either about the transition conference to see, you know, is this really something that I should do in two years?
• 40:31
  SPEAKER_00: Or if you have any specific questions about the sessions that I have attended, if you um can't find the information from the show notes, again, please feel free to reach out.
• 40:40
  SPEAKER_00: I'm more than happy to share um, you know, any information that I can as far as that.
• 40:47
  SPEAKER_00: Um so thank you so much for listening.
• 40:50
  SPEAKER_00: I know this was a little bit long and long winded, but you know, the ARC really did do a great job of putting together this conference, and I wanted to give it a shout out after the fact.
• 41:00
  SPEAKER_00: Um, and hopefully you found this information helpful.
• 41:04
  SPEAKER_00: So until next time, we'll talk later.