Your Healthy Life: Kim Carrigan interviews JoAnn Simons on intellectual disabilities

Your Healthy Life with Kim Carrigan
Friday, November 17th

Dr. JoAnn Simons is the CEO of Northeast ARC. She talks to Kim about the health and well-being  of people living with intellectual disabilities


Transcript - Not for consumer use. Robot overlords only. Will not be accurate.

Welcome everyone to another edition of your healthy life have you along and I'm so thrilled to have my guests today who by the way in my personal friend. But also was involved in an organization that I feel very very strongly about this join Simons and she is the CEO. Of the and northeast dark and it's great to have you with us thank you Howard and verdict you are a trooper today. Because. US had a huge event yesterday which has taken. Weeks months to put together but you're glowing because the outcome I think has been so terrific that it was worth every single stack you right. And the only thing I regret is that I didn't make it to the gym this morning as this all started at the gym fifteen years ago believe it or not. I was on the elliptical machine next to me an elliptical machine with Stephen resident from apple had whose. Private equity guy west shore an Osce. And now we begin talking and we begin a friendship and fifteen years later that culminated in a gift of a million dollars to the northeast are too established. The changing lives fund. And last night or yesterday the event picture of him referring to. Was we conducted our version of the shark tank and we can't hit the shark tank and used some of his money. To create positive disruption. For people with intellectual disabilities not to do so before we go on any further about ethnic as a waiter I'll let's just back up for those who are listening. Who don't know much about the northeast are let's tell everybody what that is who served. Well the north we changed lives every day that's the simplest way to put it and we do it. Every minute of every day and 190 communities in Massachusetts. And we serve over 9000 people and we do that. Fire 11100 committed staff who every day you're working with families with it's a new board would step down so enamored child recently diagnosed with autism. Somebody looking first recreation services. Somebody looking for friendship somebody meeting personal care attendant. I could go on and on as you can because you know our programs so well just how. Very day we provide. Residential services employment services we even have our own businesses and as you know you've been to a break you grants cafe. You're about to come to our black box theater which will be opening. And we have a shredding company we jewelry company we to all of this to promote the inclusion and opportunities for people with intellectual disabilities and autism. Right it's it's an unbelievable organization folks I can't say enough about it. And you may be thinking to yourself you're talking about this on podcast that is relating to health but I see this as. I health issue in that we are helping to change lives and making lives better and enhancing lives. And I think this is irrelevant conversation as a result of that whenever he can hit your life whether it's through fitness it's through. You know indicted through health. It's through these kinds of organizations and this is about your overall good health and being so it's a great organization I can't say enough about it is. If you know me you know how I feel about them because they talk about the constantly whether it's here with their ads in newspapers whether it's in person. I'm always talking about you guys because we bed and long longstanding and says. A wonderful champion France and you know the health analogy that you make is actually even. More specific because people with intellectual disabilities have the lowest health status of enemy any group in the world so yes. Lower than any ethnic group any cultural group people intellectual disabilities have the lowest health status and you know we have. Don't surgeon general's report to be able to back it up it's just not to rants I mean we're payments to him this morning. And so everything we do in all our programs health is embedded in it. Whether or not it's too moving in exercise and diet and mental wellness so it is really appropriate for us to be here. In Thai and. The shark tank which so much of it really is about promoting the well being of people with. With disparities. So the goal last night's event the Arctic which by the way I'm sure is going to be an annual event correct yes and thongs I cannot continue to have this kind of donors like Steve worry about your back help us do that so it was actually held at JFK library it was it was. And what a fantastic venue in of itself right and again historical significance. A being at the JFK library shouldn't be overlooked because it really was John Kennedy piety even his inauguration which established a task task force. To look at the issues affecting people in those days we called that mental retardation of course we know we don't use that word anymore. People with intellectual disabilities this was down at the urging hug his most fierce. Ally which was his sister Eunice Kennedy Shriver and if anybody. Has had the pleasure of working with Eunice as I have. She was a force of nature and she wasn't somebody that you said no to so when she told her brother of the president elect. That this was an issue that in the long ignored and forgotten by the American people. He took notice and hundred recommendations were made. And we are com have implemented published every single one of them. Fantastic so we come full circle last night and we have the the our tank so the the idea behind it. Was for people to come forth with. Ideas. Fresh ideas and suggestions related to the world both of people with disabilities that ticket from there. I think you'll hurt so we got over a hundred proposals and we ask for people to do positive disruption. We hundred proposals from all over the country even from Switzerland and Israel while we we gave the top forty. To a group of outside reviewers so they could rank them and we had them on reviewed by several people people within the field in people that really didn't have any information because we wanted to look at. The viability of it we have proposals from for profit companies from nonprofits from hospitals and universities. And even from people with disabilities themselves who identified issues that they shared. But that that others which airs well so after this culling process we whittled down to the seven best. And that is really hard because you know as a source softies we think everything up. And that we grew up and everybody gets a ribbon in every program. Up a. So lat yesterday was that that presentation of the seven in front of that packed auditorium at that. That the library in front of over 300 people and an expert panel of judges that word just phenomenal. And now we come back to the judges were. And after the third presentation Stephen Rothstein who's the executive director of the JFK library foundation whose partner on this. Says to me like Kamal. I want to remind them all brought appeared weak. We continue in viewing your birth thinking double 4040 entrances ago I felt that way right on it we had to get done to this. So give me some ideas of what did you hear well out about the. Three that were selected the we the one is called disrupting the guardianship pipeline. And it was one by the center for public representation which is a national organization which happens to be based in Massachusetts. But one of the things that's the most. I don't I am carefully slipped my world but ward. Is that can hold back a person any person but specially person disability is if they unnecessarily. Under guardianship. And right now it seems to be the default. But somebody turns eighteen or watt when they're seventeen somebody comes up to mom and dad and says you know you need to think about guardianship. And they know nothing else and they have put their child under guardianship and take away the personhood. So this project is gonna stop that pipeline and instead support something which we caught they call supported decision making so when you go to buy a car. You ask somebody who's driving a car that you like to say well hey what do you think about that car and they say yes or no. And you gather information that's your supported decision making so we want to surround people with disabilities with the same kinds of support. So they don't NASA and then necessarily have to be under guardianship. And if you think about it for me personally the united you know I have a son with Johnson who's who's now 38. It never occurred to me. To put him under guardianship we used to under guardianship explained because people were not an opening argument and guardianship not only applies to people with disabilities but it elderly people sometimes you know they are put under guardianship guardianship means going to the court. Petitioning the court and saying this person is incompetent. And needs representation by another person. So imagine that your incompetent. At the same time organizations like us and from me who's dedicated my life to ensuring that people with disabilities have you know equal opportunities. It's just in congress with everything that we have more so. You know there are protections that we all need to for example of you know you can undergo major surgery you would be named beauty aim healthcare proxy for someone to her decision sure to we have all the safeguards that you and I have. That we wanna apply to people with disabilities and take away guardianship as the only option for people. Because it means that you can't make the decisions so I took a picture of you and said hey connect pieces post this on FaceBook. You couldn't give me that permission you are in the past it did. Will this. You're adopted this idea. Will this be go through legislation how well this will be attended Hewitt who supports two pot they've guarding its pilots going and they are gonna create some more pilots and train people to be able to. To do that. There is legislation exists in a couple states and so we hope they halt hope also. To bring legislation forward in Massachusetts though. Good feel for beings you could have been a giants because I'm. Immediately I'm thinking what is what is putting into what is the president doing why is that happening I. Think that the president was Ali's of people with disabilities needed. Help help and Enrique NetSuite at one point that's we can't people with disabilities are now allowing him to make your decisions in many cases. So I think what we hope that will happen with this project is an. Just like in many times winner. Koppel that's about to divorce the judge might say have you considered mediation before it is something before that. So we hope that a judge would seize supported decision making. Even before guardianship have you gone and tried this as an alternative. To this process contends that that I would love that that is fantastic OK that's one line with that number two number twos. Was pathways. Two inclusive health care and this was presented from UMass medical school. I had doctor Caroline link and she just blew me away she must have studied a lot of shark tank at the she is you know she's a doctor she's a lawyer issues a master's degree in public health and she's a parent of a person that isn't. She was someone that you want it to invest in because she. She's gonna get a tan and what she is try. Her approach with UMass medical school and a lot of other part you know medical school partners. Is to provide a gap year for students who were interest in going to medical school and in that gap year they would spend a year working with people with intellectual disabilities. So that we would have a group of people who are going on to become in not only medical students at a health care professions. Dentistry as well. That would have an understanding of people with disabilities and they would work for a year and agencies like mine. And they would also then have some you know practical experience a kind of Teach for America ish. By the difference is that the expectation would be hope these folks are going to medical careers. She Lewis just she was exciting and you know we think that there is a great opportunity. For this to be scaled up. I love this site so. In that year what is she proposing where they're being wit would there be. Salary for the individual and how do we do that's why do you take here. And I savage. X that's a great right that's a great question and here's what's so wonderful about it we have a workforce crisis in Massachusetts I have hundreds of jobs that are on field. So this actually is 241. Ranked agencies like hires are going to be able to get qualified workers who gonna be different year and you know what that's okay. Because we could always use them Summers are going during school vacations are people who teacher on some income and were also going to be able to pay them benefits and health insurance for that year. So I think it's a win win because we know had with the salary is gonna come from absolutely. I would I think that. That that would have been away from pressure that it wouldn't and fit for which was it other than they may have brought a lot of people at the is accepted and favorite voting and I hit what I thought when they would describe mr. remember that there was a young woman. Who was a student at tufts and she spent her senior year. Way back working on and if the organization I work for it to actually and other. Ph.D. in clinical psychology. And I hope and I know that the experience that she did doing direct care was something she never would have had. If she hadn't had that afternoon with us and we know now that patients who come seek her she'll have. And understanding well and let's let's forget backing it's great we're talking about these professionals but let's also think about. What it is that is being accomplished which is incredible because I think that if you have. A medical. Professional. Who understands. The issues and he hadn't. In addition to the medical issues. My goodness secure can be so much greater. And I can't even imagine how it's greater care can be greater. The number of office visits because town and the land the hospital's patients can be reduced so it's green it's it's a win win for everybody right yes. We're talking folks in case you're just joining us for talking with the joint Timmons and she's the CEO of the northeast arkan they have a wonderful event. In November is an event called the park tank it to play on shark tank. Number of groups and individuals coming forward with ideas. For disruption if you will and we just heard about two of the ideas that one what's that there. That third line is prize that local favorite everybody out oh and the other two where obviously some local. Is built water wise program out of the north shall YMCA. A leading cause of death among children have autism is drowning. And there children with autism our 160 times as likely to die from drowning as other children so we think about that. There is a reason because these children their their parents or guardians just don't teach him to Sweden. Well I think it's a multi level issue one is that they they often wander and elope. The may be attracted to water. And not the parents. Don't teach that aren't. Interest in teaching to swim but that in buying my environment might not be suited to them. So this this proposal actually came from one local mothers challenged with course on which he noticed that the local YMCA. Was going to be renovating the pool and she went to executives at its executive Jack union and CEO and so many of us you know. A really open to listening to families and our members you know sometimes you don't you know and it's too many that you wanna be overwhelmed but you always this is a great example of why you do in the and the members said to the CEO. My son can't learn to swim in the current environment so when year. Constructing the pool can you think about the needs of people with not just themselves might be something like making sure that the lights in the pool can be DM. In May be that the locker room could have an area that would be free from some of the noise and distraction that might prevent a child not to and from. Either even entering the pool area. It may be the availability of having 121 instructor and it may be mean that we need to have some. AB therapists. Applied behavior people who know applied behavior analysis. Which is how children relax and learn at home and in the classroom so why wouldn't we think they need to learn in the pool like. So what excites me about this proposal. Is that if Kim the lines even lesser I think as. You know ten or twelve indoor swimming pools because as the salt deposit different disparities. But there are hundreds of lies in state and thousands in the country in this department be replicated throughout the country managing. If he if it is simplistic and I know it's not but she's seen that we implement some things you just bring the lights them. Find a place where these children can go and have some privacy and and you take care of their changing and there their trunks to me in the in the environment that can functioning. And individuals in the people who understand them. Think you can minimize the number of kids who. And as it and pass as soon so that seems so logical until you can write this as Steve Rosen you know has said you know if you can change one money. You if you taste it once I'll save one life if you set 1% of parents minds at ease when they know that there. Yeah going on vacation right and. And so you know you'd listed a few of the situations and another one that. These shared yesterday which I hadn't thought of as you know some chilled with with them intellectual disabilities and autism and and these parties to not going to be limited to somebody about autism because anybody who could benefit by that the grass courts have that label. May not want to remove their clothes and put the swimsuit Johnson being allowed to take a swimming lesson with their clothes. Which would seem ridiculous. At its face value but that may be the only thing that keeps the child. Becoming runners it's. And for me who. My child is iris senate Johnson 38 years old what was amazing to me was to sit there and seen that the alliance CAA sees this as part of their core mission. Because of my son was born it was he was the only kid with a disability take some swimming lessons and I had to knock on some reviewers I mean in my knuckles flat. Sentence be able to sit back at the point and my career and be able to realize just how much change we have made not to say that there isn't much change. That we need to continue to make. It was really gratifying to be able to do that moment Cuba. While what a great event so those are through winners but we also had that we had three winners. But we also had two students. Who we really were impressed with their application won a college student and one high school student so we put them outside the tank. And we gave them the amount of money that they had requests it which was a modest amount of money. And presented them with their checks they didn't have to do a prison president is we want it to really signal to. To them and everyone up and coming leaders seize up and coming so one was a Nathaniel live ran its governments who was a student it's wants a high school. Who himself as a disability and the ability for him to you do Ctrl+Alt+Del. Is affected by the the inability for him to make that motion on his hands so he wants to work and a prototype will be able. Over on. Which is really ironic because if you hear. You know Bill Gates every Bill Gates has recently said the worst design decision he ever made was the three Ctrl+Del because he listened to the engineer and not to his. Intuition. And the other student was into homes is a junior owlen. College in as many of you me your listeners may now Olin college zoo fairly new college Massachusetts that's just engineering students. And he had a couple other collaborators. And they are Aaron. Developing a attachment that simplifies the accessibility. Of goods on a wheelchair. None of the students happy art have a disability themselves. But it experienced. People who had a challenge because most of the backpacks. That a few album for people will choose them back. Except to say they've created elaborate moves it to the front. And Regis Regis with whoever these in years died though remember. That viewers an organization that cares about people with disabilities that ambassador here as a twenty year old and who knows what they gonna do in their forty or 43. Right here for a particular four days after that is fantastic that that's fantastic. Great night it was a carefully you gotta do this every year we got by the dollars at any air right we have doubts for we pretty sure we have the Dow's been actionable Intel hope that people will be inspired by this. Because this really shakes up traditional. Philanthropy and that was what Steve Rosen pals goalless to break out of just writing a check them to really create something a ripple effect of change. And we hope that others will see this as real value. And support us. Well like you said you writing checks which keeps on pain as pain which is just spectacular. If anybody was to get involved who's listening with the north these are they need to learn more maybe they have a child and grandchild. They know someone who needs and services they just want to volunteer. Political well the you know the everyone Google's taken over the northeast are Greek go with the shark tank but our our website is an. ARC. Dot org and any you know anybody has a question about the child's development you know we also the kind of agency that you can come to a mass status Watsco whatever you need is but it's not any hyphen in RC dot org war on FaceBook or Linkedin you know we. Twitter and a you know again you know I'm Julian Simon's and you know. Feel free to reach out to me what you're doing incredible work and have watched what you've done with the northeast dark over these couple of years you're really sort of a newbie to this organization. As a whole what are you in your third year you out into my third year. January through pretty close it's amazing what you don't congratulations. To you Leo well which to house. Supporters like you and a team of people who you know we we can rely on every day. Makes my job really easy to win thanks for joining us thank you and thanks to all of you has been another edition of your healthy life.