The following is a conversation between Peter Berns, the President and CEO of The Arc, and Denver Frederick, Host of The Business of Giving on AM 970 The Answer WNYM in New York City.
Denver: The Arc promotes and protects the human rights of people with intellectual and developmental disabilities. It also actively supports their full inclusion and participation in the community throughout their lifetimes. It’s a big mission, and it is led by our next guest. He is Peter Berns, the President and CEO of The Arc.
Good evening, Peter, and welcome to The Business of Giving!
Peter: It’s great to be here, Denver.
Denver: Share with us the history of The Arc and how the organization has evolved since its founding.
Peter: Some of the origins, we can actually trace back to the 1930s, but the organization was officially founded in 1950. It really was started by parents. There’s a really interesting story about The Arc, and when I speak about parents, I’m really talking about moms. This was back in the day when if you had a child with significant disabilities, intellectual disabilities, you very well may have been told by your doctor, “Why don’t you let them institutionalize your child, sign over your parental rights to the state, and go home and take care of the rest of your family?”
Denver: Best for you and best for the child.
Peter: Right. These are moms who said, “No, we’re not going to do that.” And the families… they took their children home and they started working to create better life opportunities for their sons and daughters with disabilities.
It started kind of organically…true grassroots, nonprofit fashion. All around the country, these organizations popping up. And then in the late 1940s, they found each other and decided to start a new organization, a national organization. And that’s how The Arc was born.
Denver: It does sound like church basements, doesn’t it?
Peter: It’s church basements, people’s livingrooms. In New York, you hear the story of the mom who put an ad in the paper looking for other moms, and that’s how it all began.
Denver: What does intellectual and developmental disabilities include?
Peter: The most common diagnoses that people are aware of are conditions like Down Syndrome or autism spectrum disorder, fetal alcohol spectrum disorder, Fragile X syndrome, but there are literally 200 different diagnoses that kind of manifest or fit within the category of an intellectual or developmental disability. They’re really characterized by IQ and the limits that people experience in their functional capacity, and their ability to kind of deal with some of the basics of day-to-day life.
Denver: How is the organization structured? You’re a federation, right?
Peter: We are a federation, which means we have 610 chapters around the country. We’ve got local chapters on the frontline that are working to serve people and their families. We’ve got state chapters that are very involved in advocacy at the state level, and organizing folks in support of advocacy at the national level. And then we also have the national organization.
Each of our local units and state units are a separate nonprofit organization, and we all band together in this federation structure flying the same flag and committed to the same values and the same principles and the same mission.
I think what’s really important is focusing on what we all have in common, and that’s the mission of promoting and protecting the civil rights of people with intellectual and developmental disabilities, and actively supporting them to be included in their communities and fully participate in their communities across the lifespan.
Denver: What’s the key to leading a federation? It doesn’t sound like an easy task when you have all these hundreds of independent nonprofit organizations, but you have to be singing from the same playbook. As the CEO, what’s the key to making all of that work?
Peter: Well, it’s funny. I often refer to that as my job involves herding cats, and there’s very much that element to it. But I think what’s really important is focusing on what we all have in common, and that’s the mission of promoting and protecting the civil rights of people with intellectual and developmental disabilities, and actively supporting them to be included in their communities and fully participate in their communities across the lifespan.
This is an organization that serves people from prenatal diagnoses that a family may receive before a child with disabilities is born, to end of life issues. So, we’re involved with every aspect of the life of people with disabilities.
That’s one of the things that really distinguishes The Arc from other developmental disability organizations. Since the day of the founding to the present, family have been critical to the leadership of this organization.
Denver: What I find interesting, and you mentioned it before about your founding, is that to be part of this federation, the local chapter really has to have the deep involvement of the family and the siblings leading the organization. Is that true?
Peter: Family, the siblings, and individuals with disabilities themselves. That’s one of the things that really distinguishes The Arc from other developmental disability organizations. Since the days of the founding to the present, family have been critical to the leadership of this organization. It started with the parents, and then siblings joined along, and then folks with disabilities themselves as they came out of institutions like Willowbrook. They started speaking for themselves and started to call themselves self-advocates, and they became very important leaders in the movement as well.
Denver: That’s great. Too many of them – these organizations – are run by the professionals and by board members who can give a check, and not by people who’ve really been touched by the issue.
Peter: They’re not mutually exclusive.
Denver: No, they’re not mutually exclusive. That’s exactly right.
Well, your three biggest areas of service are education, employment, and housing. So let’s briefly talk about the work that you’re doing in each, starting with education. What does that entail?
Peter: There are very big problems and challenges for folks with disabilities, students with disabilities in the education system. We have a national law that entitles students with disabilities to receive a Free and Appropriate Public Education in a least-restrictive setting. That’s been a vision for many years now, but we’re not really accomplishing that.
So, our chapters are really, really involved in providing support to families to help them navigate the complexity of the special education system and get what they need for their children with disabilities. A lot of our chapters also do after-school programs. They do summer programs, and they’re very involved in policy advocacy: 1) advocacy to try to get special education in the schools fully funded; and 2) also advocacy to address tough issues like inappropriate use of seclusion and restraint in the schools.
The sad reality is that many, if not most adults, working-age adults with disabilities, could be working; only about 15% are employed. Many would like to be working.
Denver: How do you help your clients with employment?
Peter: That’s another big area of challenge for folks with disabilities. The sad reality is that many, if not most adults, working-age adults with disabilities, could be working; only about 15% are employed. Many would like to be working. So our chapters are engaged in a variety of activities in this area. Some of them operate businesses that actually employ people with disabilities. They help support people with disabilities to find jobs in the mainstream employment marketplace and help folks be successful in those jobs.
For example, earlier this week, I was at a meeting with the CEO of Advance Auto Parts. We just launched a national partnership with Advance to help them to recruit and place individuals with intellectual and developmental disabilities into their distribution centers and their retail stores. Yesterday, when we were talking with the CEO, we were talking about placing folks into their headquarters as well.
Denver: Fantastic. Those are the kinds of partnerships you need to move the needle.
Peter: We’re really excited about that.
Denver: And of course, housing is always a big issue and a challenge. What are some of your more successful initiatives here?
Peter: A lot of our chapters around the country actually operate housing. They operate group homes, small group homes to support folks living in the community. And then they also provide supports for folks to live in apartments and homes on their own, providing the services and support someone needs to be successful living independently. They also provide supports to families where their adult son or daughter with disabilities is still living at home with mom and dad.
Part of the reality, and one of the challenges we face in this area is that the majority, about 75% of adults with disabilities, continue to live with mom and dad, and that includes more than a million families nationwide where mom and dad are in their 60s and older. Unfortunately, a lot of those families don’t have a plan for what’s going to happen in the future when mom and dad can no longer support their son or daughter.
So, we’re doing a lot of work nationally and with our chapters around the country around future planning and have created a lot of tools and resources to help families plan for the future: Where’s their son or daughter… where is the individual going to live? How are they going to build a really rich, robust life independently in the community?
We need to marshal the government resources. We need to marshal private resources through charity and just through friendships and professional associations. We need to garner more attention in investment in this cause.
Denver: What are some of the answers to that, as an example? Because that’s a tough, tough question.
Peter: It takes planning, and it takes really marshaling all the resources that are available in the community. The Arc has been successful over the years in advocating for the creation of programs and funding streams that provide services and supports for people with disabilities, but the reality is the government-funded programs are only supporting about 15% of the families that need help. And so, lots of families are really left fending for themselves.
But ultimately, what we need to do is we need to marshal all the resources. We need to marshal the government resources. We need to marshal private resources through charity and just through friendships and professional associations. We need to garner more attention in investment in this cause.
…there are around 7 million people with intellectual and developmental disabilities in the country.
Denver: You said the government is helping about 15% of the families that need help. What is the total universe, in terms of families that have this challenge?
Peter: General estimates are: there are around 7 million people with intellectual and developmental disabilities in the country.
Denver: I should add the organization also provides services within the criminal justice system through your National Center on Criminal Justice and Disability. A key initiative there is the Pathways to Justice program. Tell us all about that.
Peter: One thing that folks really don’t understand is that individuals with intellectual and developmental disabilities are overrepresented in the juvenile justice system, and they’re overrepresented in our jails and prisons. There’s something of a pipeline that goes from one to the others, I’m sure you know.
So what we’re trying to do through our Pathways To Justice program is educate all the players in the law enforcement system – from the first responder, the police officer, to the prosecutors and defense attorneys and the judges – to first recognize when they are encountering someone who has an intellectual and developmental disability, and then to make sure that they provide the necessary accommodation and support so folks are treated fairly in the criminal justice system and across the whole process from arrest through, unfortunately, in some cases, incarceration when people commit crimes.
…the strength of The Arc as an organization is we have tremendously talented, knowledgeable people all across the federation.
…we do a lot of work organizing chapters to work together, whether it’s in criminal justice, or future planning, or special education advocacy, or use of technology to support people with disabilities. We try to bring our chapters together to work together, learn from one another, and advance the field in that way.
Denver: Peter, I can only imagine the challenge it is to cover this incredibly wide spectrum and breadth of services. How do you go about managing that?
Peter: Well, it’s funny, I often joke that as a chief executive officer of an organization like this, I only get to know a little bit about a lot of different subjects, so it is really quite a challenge.
Part of the way we do it though is we have a tremendously talented, knowledgeable staff at the national level. We also recognize that the strength of The Arc as an organization is we have tremendously talented, knowledgeable people all across the federation. Part of our task as a national organization is to try to figure out how to harness the collective intelligence, the collective knowledge and experience across our 610 chapters, and then really put it to good use.
And so, we do a lot of work organizing chapters to work together, whether it’s in criminal justice, or future planning, or special education advocacy, or use of technology to support people with disabilities. We try to bring our chapters together to work together, learn from one another, and advance the field in that way.
Denver: That’s very smart. Tap the experts, and then disseminate the information.
Peter: That’s exactly right.
Denver: The organization is known for being very effective up on Capitol Hill. What have been some of your federal public policy successes? What are the big things you’re working on at the moment?
Peter: So, over the years, The Arc has been a major player in every development that has advanced the civil rights of people with disabilities, as in putting in place the programs and supports that they need to live in the community.
Denver: What would some of those be?
Peter: A big example of that is the creation of a social security disability insurance program, the SSI or Supplemental Security Disability Insurance program, Medicaid-funded home- and community-based services, the enactment of the Americans with Disabilities Act, the passage of the law that now requires Free and Appropriate Public Education for public school students with disabilities. And more recently, the Affordable Care Act, which is critically important to folks with disabilities, and also the Able Act, which allows families that have children with disabilities to create disability savings accounts, kind of analogous to education savings accounts.
Denver: Some big wins.
Peter: A lot of big wins, and a lot of big challenges that we still face.
We really have trouble finding the workers who are going to do the one-to-one personal support for individuals with disabilities. And if you can’t get good workers who are going to stay, quality of life for the folks with disabilities is going to decline.
Denver: What are some of those?
Peter: Frankly, the last three years we’ve really been fighting something of a defensive battle. I often describe it as working to prevent the dismantling of everything that we built the prior 70 years building. That’s been the major battle. And then really trying to figure out: How do we break through this problem… the system only serving about 15% of the people?
One of the other really big problems that we’re currently facing in this field is that organizations, our chapters and other organizations that serve people with disabilities or families when they’re looking for help, there’s a real… what we refer to as the “direct support workers crisis.” We really have trouble finding the workers who are going to do the one-to-one personal support for individuals with disabilities. And if you can’t get good workers who are going to stay, quality of life for the folks with disabilities is going to decline.
Denver: Well, the best workers have always been the caregivers, and the time commitment they need to make and the stress that is inherent in doing this is really significant. Talk a little bit about the caregivers and what their challenges are.
Peter: When you think of caregivers, there are really two groups here. You have the professional caregivers, the direct support workers who have really challenging jobs, and there isn’t enough funding in the system to give them adequate pay, and so there’s a high turnover, and we are losing talent constantly; that’s one group.
The bigger group, of course, are the parents and the family members—
Denver: That’s what I was thinking about
Peter: –who are providing the day-to-day care. We’ve done a lot of research in this area, and the reality is that folks who are caregivers are really stressed out. They’re grappling with a lot of challenges. They’re having trouble balancing their work responsibilities and their caregiving responsibilities, and they are desperately in need of more support.
One of the things that we’re actually working on now is we’re trying to start up a dialogue with a number of businesses and really looking at the subject of: How can a business better support those of its employees who are caregivers? Because the reality we know from the research,… and actually Harvard Business School recently came out with a study on this, is every workforce has a lot of folks in it who are caregivers, who are struggling with the day-to-day of caregiving, and businesses need to do a lot more to support caregivers. We’re looking actually to pilot a new program where The Arc would be involved working with business to provide a caregiving employee benefit to bring more help to the caregivers
…the chapter then created this program called Wings for Autism. It’s a travel simulation where the family go… and the individual with disabilities goes and checks in at the ticket counter; they go through TSA; they go to the gate area; they board a plane. And so, they can practice that whole experience before they spend a lot of money buying tickets for a vacation, only to find out that they can’t do it.
Denver: That’s interesting. Fantastic.
Well, a lot of the cohort you serve, for them, traveling can be stressful and even a frustrating process. The Arc has a program to address that. It’s called Wings for Autism, Wings for All. Tell us about it.
Peter: This is really exciting, and it’s a great demonstration of the power that is in The Arc.
We have a program, Wings for Autism. It originated in Boston. When one family went to one of our chapters and described a problem they had with their son on the autism spectrum not being able to successfully navigate through the airport. And the chapter then created this program called Wings for Autism. It’s a travel simulation where the family go… and the individual with disabilities goes and checks in at the ticket counter; they go through TSA; they go to the gate area; they board a plane. And so, they can practice that whole experience before they spend a lot of money buying tickets for a vacation, only to find out that they can’t do it.
This program originated in Boston, and we have since spread it nationwide. So last year, we had 40 Wings for Autism or Wings for All events in airports around the country. And we’re getting wonderful stories of families coming back to us, telling how their son or daughter could finally go see grandma, going across the country when they had never been able to do that before.
Denver: What a wonderful idea! And as you say, it’s again, one chapter coming up with that idea and then disseminating it. And now the program has gotten its own wings, and it’s beginning to spread.
Peter: That’s right. It’s really taken off.
Denver: There you go.
The Arc has historically received the lion’s share of its support from the federal government. I know that you have wanted to bring more private philanthropy to the table. Peter, how are those efforts coming? And to a degree that they’ve been successful, what are some of those revenue streams?
Peter: For our federation as a whole, as you described, a lot of the money comes from the federal government and state governments through the Medicaid program. The Medicaid program is the single largest source of funding for home- and community-based services that support people with disabilities. And so, by and large, those funds aren’t growing anymore. So our chapters need to look to other sources of revenue and really working on knocking on the doors of foundations and companies and, of course, individuals looking for that support.
Part of the challenge in this area is disability has not been on the radar screen for a lot of folks in the philanthropic community, particularly the foundations and the corporations. And so, we’re really working to change that. We’re knocking on a lot of doors, educating folks about the role of people with disabilities in the community, the presence of people with disabilities and the unique challenges that they and their family members face. We’re starting to gain some momentum, attracting more resources, more philanthropic resources to the cause.
Denver: Well, you mentioned one corporate partnership already. Give us one or two others that you have that are really helping you promote your work.
Peter: Advance Auto Parts is a new partner. We have a long-standing relationship with Comcast NBCUniversal, which has been very supportive of some of the work that we’re doing around the use of technology in supporting people with disabilities.
Denver: That’s cool.
Peter: And they just…we were thrilled. They just, over this past year, decided to extend their internet essentials program to folks with disabilities who are on SSI, to make the internet available to lots of folks who previously haven’t had it available. But great working relationship with Comcast NBCUniversal, with Walmart, and quite a few smaller companies as well.
One of the major “Aha!” moments to me when I came on board at The Arc almost 12 years ago was to discover the passion that people bring to this cause…
Denver: What’s it like working at The Arc? The corporate culture…. What’s the best thing about it in your mind? What are you working on to make it better?
Peter: One of the major “Aha!” moments to me when I came on board at The Arc almost 12 years ago was to discover the passion that people bring to this cause, and that’s really one of the strengths of the culture of the federation. It’s really understandable that a lot of our folks on boards, on staff, are parents or family members. They have a personal stake, but the passion extends well beyond that. Anybody who gets involved in this cause, it seems, gets to be passionate about it, and that’s a really central part of the culture.
The other thing is a sense of responsibility that crosses generations. Now, families look to this organization to protect the rights of their sons and daughters with disabilities after they’re gone. People will say that to us, and for those of us hearing that message, it just tells us we have an awesome responsibility in leading this organization.
We’re really working hard to get better at fundraising, to venture into the world more aggressively of social media, and get folks to know who The Arc is because we are one of the most well-kept secrets – eighth largest charity federation in the country, 610 chapters, 4,700 service locations – and it seems there are too many people out there who just don’t know who we are and the extraordinary work that we’re doing for people with intellectual and developmental disabilities.
Denver: What would you like to get better at?
Peter: We’re really working hard to get better at fundraising, to venture into the world more aggressively of social media, and get folks to know who The Arc is because we are one of the most well-kept secrets – eighth largest charity federation in the country, 610 chapters, 4,700 service locations – and it seems there are too many people out there who just don’t know who we are and the extraordinary work that we’re doing for people with intellectual and developmental disabilities.
…the basic problem we’re still facing is that the average person out in the community doesn’t know anyone with an intellectual or developmental disability, and there isn’t a fundamental respect for the humanity of these individuals.
But if you see someone who looks different, or you encounter someone with an intellectual or developmental disability: get to know them, and it will enrich your life, and it will do good for everyone.
Denver: Branding, branding, branding. Well, I hope this helps at least a little bit.
Let me close with this, Peter. You’ve done some studies and surveys measuring how our nation is doing to support people with intellectual and developmental disabilities, and their families. How are we doing? What needs to happen for us to do better?
Peter: We’ve made tremendous progress in this country over the last 70 years in improving life opportunities for people with intellectual and developmental disabilities, and we still have a long, long way to go for people to be fully included in their communities. We recently have come to think that the basic problem we’re still facing is that the average person out in the community doesn’t know anyone with an intellectual or developmental disability, and there isn’t a fundamental respect for the humanity of these individuals. They’re different. You don’t understand who they are, what they’re like. And that’s holding us back. There’s a dynamic there that we really need to change.
And so, we really encourage everyone to get to know someone with an intellectual developmental disability. Don’t look the other way if you see someone who obviously looks different, and a lot of times these are invisible disabilities… so you won’t know. But if you see someone who looks different, or you encounter someone with an intellectual or developmental disability: get to know them, and it will enrich your life, and it will do good for everyone.
Denver: Well, Peter Berns, the President and CEO of The Arc, I want to thank you so much for being here this evening. Where can people find additional information about the organization, your services, and maybe provide some support for all that you do?
Peter: Best thing to do is go to our website, thearc.org. When you’re on the site, you can also click through and locate one of our chapters right here in your community.
Denver: Fantastic. Well, thanks, Peter. It was a pleasure to have you on the show.
Peter: Thanks for having me, Denver.
Denver: I’ll be back with more of The Business of Giving right after this.
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