Episode 4: Northeast Arc’s Innovative Approach to Disability Services — with Jo Ann Simons Jordan: Welcome to the Plan for Special Needs Trusts podcast presented by PLAN, the Planned Lifetime Assistance Network of Massachusetts and Rhode Island. Our plan is your plan, and I'm your host, Jordan Ridge. Today we welcome a wonderful community leader with a strong connection to PLAN of Massachusetts and Rhode Island. Meet Jo Ann Simons, President and CEO of Northeast Arc. Northeast Arc was founded by parents of children with developmental disabilities who wanted to raise their sons and daughters as full members of the community. Over the many decades, much of the dream has come true, but we're about to find out how Northeast Arc is making plans for an even brighter future. Jo Ann, thank you for joining us today. Let's start, first of all, with a little background on Northeast Arc. It's been with us for many decades. Congratulations. What's the primary mission and how has it evolved over the years? Jo Ann: Well, thank you very much. The primary mission has always been to help individuals with disabilities achieve the most independent lives possible. And it certainly evolved as we as a society and the community have realized the gifts and strengths of people with disabilities. So in the early 50s, when the organization was formed, families were looking for support to have their children live at home to prevent them from being institutionalized, which was the only alternative, really, at that moment in time. And these brave families defied the recommendations of doctors and social workers and, many times, their own family members to keep their children at home. They began by developing preschools and very rudimentary employment programs. So for their time, they were quite visionary, and they were able to prove that people with disabilities could be successful and learn skills. And in time, the government, both federal and state government and local communities, realized that individuals with disabilities were entitled to an education, were entitled to learn life skills, and began funding these programs. And as federal and state funding became available, the Arcs then evolved to do things that the government wasn't yet funding. And so our history has always been in some ways, we're the original Shark Tank. We're proving ideas. Jordan: Well, you've proven it time and time again that people have, when given the opportunity, when given the training, when given the patience to succeed, will do that, and they do it in a variety of ways. Talk about some of the programming that you're most proud of. Jo Ann: I'm proud of our innovation and our ability to positively disrupt the way people with disabilities are viewed. And some of the things I'm most proud of are the fact that we have some businesses we are looking at. We're not looking at the community and saying, this is what you need to do for us. We're looking at our communities and working in partnerships to say what's going to make our communities healthy and viable and the best places for everybody to live. And that includes people with disabilities. So, for example, the city of Peabody had done a survey and found out from their community members that they wanted to see a downtown coffee shop. And so they came to the Northeast Arc and said, would you be interested in opening a coffee shop? And we thought, wow, we could meet the community need, but we could also then use it as a training opportunity for people with disabilities, which is one of the primary focuses of the organization. And so we have a coffee shop in Downtown Peabody called Breaking Grounds. And within Breaking Grounds is Project Perk, where we train people, and we trained over 30 people (not to work in Project Perk, which other coffee shops for people with disabilities do), we're training them to work in the hospitality and food service industry throughout our region. So we're also then helping the employers in the region with a vital need that they have, which is helping their workforce. Jordan: I love the name of the coffee place. I love the word play, it’s great. Jo Ann: Yes. And we would love you all to come because we're not quite breaking even. Jordan: All right, buy your coffee and Peabody, by all means, from this great organization, Breaking Ground. Jo Ann: That’s just one example, because we have example after example of ways that we're innovative and creating new and different opportunities for people with disabilities. We have a shredding company where we document destruction. We have a vibrant art program where people are creating valuable and beautiful pieces of art and fine art, and they have gallery space both within our own buildings and other locations. And we've just opened the Center for Linking Lives at Liberty Tree Mall, which I think is probably our most innovative and groundbreaking. Jordan: Let's talk about that, because that was in my notes, and you're very excited about that. This is a bold new enterprise. Tell us about it. Jo Ann: And we think it's highly replicable. Well, people with disabilities, we've been saying, belong in the community. And then organizations build a building, and the only people that go to those buildings are people who need services because of their disabilities. So we are leasing 26,000 sqft at the Liberty Tree Mall in Danvers. And we've moved our community facing programs into (what a novel idea), into the community, into the real community. Malls are on bus lines, so it provides an opportunity for both the individuals we support, their families and our staff to be able to get to work. Malls in this country are redefining themselves. It gives us an opportunity to work with our communities to save a structure so that they don't all become distribution centers. And at the Liberty Tree Mall, there's a church, there's a gym, there's a swimming pool complex. There's retail, there's shop, there's restaurants. We're creating a new vision. And we think that we're part of something that's highly replicable, highly transformational, and at the same time, we're reducing our carbon footprint. So we're not out there building a new building. Rather, we're part of the whole reuse movement, which I think is really important in this country as well. And maybe not finally, but not unimportant, is that one of the biggest challenges in the modern day workforce is finding suburban parking. And the malls have adequate amounts of suburban parking. So we think we've hit it out of the park. We've gotten our folks in a valuable space. We've got our employees in a beautiful location. We're reducing our carbon footprint, and we are helping an important part of the community stay vibrant. Jordan: That's so exciting. And there's so much potential for malls and retail strips and the like around the country, especially with what's going on in the post-pandemic, hopefully post pandemic era. I want to talk to you about a couple of things. What are still the biggest misconceptions about the people, the clients that you work with from those who are not aware, what is the public need to know about the individual people and what they're like? Jo Ann: They're valuable. They are important members of our community, and they have skills, and they have great skills and great potential to be good neighbors, good friends, good family members, good employers, good members of our community. And they're interested in giving back in the ways that you and I, and they want to have full, complete lives. And I can talk personally. I mean, this is not something that's just academic and professional for me, but I have a son who is 42 years old who has Down syndrome, and I can tell you that the lessons that he has taught me and taught the rest of the world are lessons that we continue need to know and be aware of. Jordan: I'm so glad you brought up your own story and your own son. Did one thing coincide with the other? Was this job that you've had for so many years and done so well with was this as a result of having a child at the time, or was it just a coincidence? Jo Ann: In a sense, no. It was a result of a very thoughtful decision. I graduated from college and immediately got a Master's degree in social work, not something that I would recommend today. I think students should take a break between undergraduate and graduate school, but my father told me as long as I stayed in school, he'd support me. So I just went on to school. And then a year after I finished my graduate degree, Jonathan was born, and I realized that the world that I envisioned for him didn't exist, that I wanted him to have opportunities to be included, to be accepted, and that the only way that I could make the dreams that I had a reality for Jonathan was to be able to make those realities for everyone else. I made a list of all the things that I thought should be in place to make it easier for parents who had a diagnosis of a child with a disability. And I kept that list going in the weeks and months ahead of the ways that I thought the system could be better for families. And I didn't want any family to have to go through what I had gone through. And I knew that most families wouldn't have the marshal of information and support that I had just from my education. And I also had a wonderfully, supportive family. And so I've had a remarkable career, both in the nonprofit sector and in state government. And I have witnessed the most dramatic improvements, opportunities, I think that even I might not have imagined in 1979. Jordan: It's really important to stress that Arc provides a resource for those people who are afraid, concerned, wondering what steps to take beyond helping the individuals, you're helping families, too? Jo Ann: Oh, absolutely. We help 150 individuals and families each year. But beyond that, I think we're helping our communities. Because our community knows now that there's a place for people with disabilities, whether or not it's their immediate family member or it's an extended family member, it's their neighbor, it's the person that they worship. There are resources and good resources that we are making our communities better. Jordan: One of those resources involves PLAN of Massachusetts and Rhode Island, and I know you've had a long relationship with this organization. Talk a little bit about how it works and how the relationship has benefited the clients of Northeast Arc. Jo Ann: PLAN is unique in the sense that it provides reassurance for families as well as good, sound financial advice. So there are a lot of places where families, children with disabilities always worry about one thing, and it doesn't matter where I am in the world. It's the same thing. What's going to happen to my child when I'm no longer here? And we've had answers for the financial aspect, you say, okay, you can establish a trust and you can have a trustee. That's not all that families are asking for. Families want that, but to go to a large financial institution, you have that somewhat impersonal advice. And oftentimes, it takes great wealth to be able to have the kind of relationship in a financial institution that you're seeking. And most families with children with disabilities, although have the range of financial abilities, are of modest means, and their greatest asset may be their home, which would become an asset upon their death. PLAN provides an opportunity for them to pool their resources in a pooled trust so that if a family has $5,000 or $10,000 or $100,000 or millions of dollars, they're able to know that their money is going to be invested on their behalf in a way that's going to benefit their family member by a group of investors whose sole mission it is is to support the future financial needs of somebody who has a child with a disability or a family member that's aging. So it's a very different model than a financial institution. But what PLAn adds on top of it, which is really the factor that families really are looking for, is that social worker who's not going to be only caring about the financial return, which is very important because we all want to make sure that the financial return is great. PLAN has a great financial track record in that. But they want to know that when they're gone, somebody's going to be making decisions about how that money is spent on behalf of their child. And why this is so important, I can tell you this from first hand experience. Sometimes families will have the best intention and they will name another child as the trustee of the trust. You don't know what's going to happen beyond the grave. And that other child may be feeling the pressure from a spouse or from what's happening in their own personal life not to spend the money on behalf of the child with a disability for whom you intended that trust to benefit. But they want to keep that money because they know that when the person with the disability dies, it will go to their heirs. So you've created a conflict, which PLAN takes away that conflict. And parents don't have to worry about what's going to happen when they're no longer there. that their intention that the money is going to grow on behalf of a child with a disability, and then the social worker is in there to help make sure that the decisions that are made are made as if you are still alive. Your child wants to have clothes from the Gap. You know that the person is going to make sure that the child is going to have clothes from the Gap. If you need an advocate at the table, you want someone to be there as if it were you. And so the combination of the financial management of the pooled trust and the social work element coming together really is something that families have been striving for and looking for, and PLAN has provided this for decades. Jordan: PLAN is a little younger than Northeast Arc by just a few decades maybe, but has that long track record of success. And I think you're right. Just as you and your organization and organizations like yours, it's about the whole person. You can't just select a particular path for everyone and say this is the way to go. Everyone is special and has needs. But what are your goals going forward, both financially, how to continue to raise money to do the things you do, but also to expand the programming. What would you like to express to the audience? Jo Ann: Well, the Northeast Arc is always growing and expanding. And so not to show my cards, but our strategic plan for next year does show some initiatives, new initiatives in areas that we think are where the future is growing. I think our field is going to begin to really embrace. And we'll see the explosion of technology in the area of remote monitoring and assistive technology devices that will help people live independently for longer, both people with disabilities and people who are aging. I think the workforce crisis that is across the board is just not going to go away, and that's going to require us to look really differently at how we provide services. So that's something that I'm looking ahead to. And the area that is probably going to see an area of explosion is going to be the area of self direction, which is instead of organizations telling families what they need, families are going to tell us what they need, and they're going to be able to direct those services. And so we're going to be shifting the way we think about where the power lies, so to speak. And additionally, I think the other area is that we're going to continue to see a lot of merger partnerships happening in our industry as we're seeing throughout the industry. We may see even increased interest by private equity in our business, which is a whole other podcast to talk about that. But I think we're also going to see what we've developed with PLAN, which is more and more partnerships with like minded organizations whose goals and mission may be different, but our objectives are the same. And continuing to do that is something that's very important to me is that we don't do this alone. And partnerships, whether or not it's with PLAN, which is a wonderful partnership, with the YMCAs that are in our community, or the Council of Aging or the organizations that provide hospice services, we're all part of a community that hopefully we're going to make our region the best region for people to live in. Jordan: There is so much good news, and podcasts like this one are highlighting the good news. I just want to cheat a little bit and suggest that over your shoulder there's a poster, and we're doing this, of course, with a video cam. This is only the beginning. After talking with you, I get the sense that you look at that and think about that often, and there is so much to be done. But you have a passion for doing this, don't you? Jo Ann: Yeah, I do. And it certainly started with Jonathan, but it was obviously more beyond Jonathan to be able to know that I stood and witnessed and participated and was part of the most remarkable transformation of how people with disabilities in our country are celebrated. And that's pretty remarkable to be able to look back and know that you've been part of something that has moved the needle in a way that that needle has never gone back. Jordan: I am so happy that you joined us today. What is the best way for people to find out about Northeast Arc? Why don't you give us the URL, if you would? Jo Ann: NE-arc.org we are in the middle of a $3 million capital campaign to pay for the build out of the Liberty Tree Model Center for Changing Lives. We have raised $2,000,000. One last thing: we do a competition called the Arc Tank. We actually give away every year several hundred thousand dollars to the most disruptive ideas that are positive for people with disabilities from around the world and we are going to be in our fourth year of competition. We are very lucky, we got a million dollar donations. Steve Rosenthal of Marblehead said do something different and we did it. We came up with the Arc Tank. It’s returning this December - go on the website, submit a proposal and be one of the qualifiers that get the picture idea in front of an amazing panel of judges. Jordan: That's great. It's NE-arc.org. Joanne I can't thank you enough and the folks at PLAn of Mass in Rhode Island thank you as well for a long standing and long future relationship. Thank you and take care. Jo Ann: Thank you. Jordan: We want to thank you for listening to the Plan for Special Needs Trusts Podcast Presented by PLAN, The Planned Lifetime Assistance Network of Massachusetts and Rhode Island. PLAN is a 501(c)(3) nonprofit company where the goal for every one of its clients is always to preserve assets, protect benefits and live well. For more visit www.planofma-ri.org we invite you to subscribe, download, rate and review this podcast. Thank you for sharing it with others. Our plan Is your plan.