Jerry McCarthy, who served as CEO of Northeast Arc for 36 years, reflects on his legacy of growth and innovation.
When Jerry McCarthy arrived at Northeast Arc in 1979, the organization was supporting just a couple of hundred individuals in 19 communities. By the time he retired 36 years later, the agency was supporting more than 10,000 people in 200 communities. In this interview, McCarthy reflects on that growth — highlighting what it took and the challenges along the way.
[UPBEAT INSTRUMENTAL MUSIC] Hello, and welcome to All Things Disability, a Northeast Arc podcast. I'm Susan Ring Brown, Director of Foundation and Legacy Engagement at the Arc. This year, Northeast Arc is celebrating our 70th year in changing lives and discovering abilities. To celebrate that anniversary, we're speaking to volunteer and professional leaders of the organization from across the decades.
Today, it's my great honor to welcome our former CEO, Jerry McCarthy, who had an extraordinary tenure leading the organization for more than half of its existence. Welcome, Jerry. It's great to see you.
Great to see you, too. Glad to be here.
Thank you.
It's like old home week, you know?
It is. It is. I was counting the other day. It's almost 40 years, I think, or maybe even a little over 40 years since we've known each other. So it's wonderful to see you.
Well, you make me feel old.
No, no, no.
[LAUGHS]
I'm not, so you can't be old.
Yeah.
So when you joined Northeast Arc back in 1979, it was called North Shore Arc at the time. And you were serving about a couple of hundred people and had a budget of $600,000 in about 19 communities. And by the time that you retired, you were serving 15,000 people in 200 communities with a budget of $212 million. How do you even begin to launch that kind of growth in an organization? How did you start?
When I came to the Arc, I remember meeting with the board of directors when I got hired. And they asked me how long I thought I would be there. I said, oh, I think I'll be here for two or three years. By then, I will have completed everything that I could possibly imagine doing here.
So 35 years later, I was still trying to figure out when I was going to leave. But I stayed that long because the organization was constantly changing and growing. The job was never the same. I never got bored. Every year was a different job or a different focus. So it was really a very enjoyable experience, a very, very nice place to work.
Well, wonderful. I know that when you began, the Arc was serving folks with intellectual and developmental disabilities. And as you came in and started to grow the programs, you also started to serve folks with various challenges. Can you talk a little bit about how that came about?
We felt that that was very limiting because we were hearing of people in the community who had other disabilities besides being developmentally disabled that needed services, needed help. And we were in a position to provide some of that assistance. So we began exploring other ways of developing services and programs. Perhaps the one that stood out first was our deaf services.
We had a member of our board of directors who had a child who was developmentally disabled and deaf and really had a need for residential and day services, employment services. And we felt that we could do something for them. And as a result, we worked closely with-- this is Carol Rainer I'm talking about-- worked closely with Carol and her family. And we developed a program in Lynn to serve six adults with deafness and developmental disabilities.
And I think that was a very unique program at the time. There weren't other models like that around the country. So we were very unique. And we were unique because we decided that the staffing should reflect the same conditions of the individuals. So a focus was on hiring deaf staff and having American Sign Language as the main communication mode in the home.
And I think it was pretty successful. As a result, over the years we were able to expand that to have several other residential programs to serve the same folks. So that was an exciting time. And we got a lot of support from the families and from the board of directors. And it was kind of really our first big effort to expand beyond just the traditional developmental disability focus.
Absolutely. It's such a wonderful, incredible family support and partnership with you between Carol Rainer, who served as board chair. And then her son Rob served as board chair, and then Julie Rainer Cummings served as board chair. So a wonderful family tradition of supporting us and supporting you along the way.
Julie remains on the board. So it's really been a long-time support effort by that family.
Absolutely. And we know Julie's sister, Lisa, who passed away recently, also had a wonderful career in the employment programs of Northeast Arc. So the services that began in residential also expanded into the employment programs offered by the Arc.
That's right. Our focus always was that if we were going to provide residential services to people, they had to have a day focus as well. They had to be working or they had to be in a training program. Or in the early days, we had sheltered employment. And we had to offer a full range of services to people, not just residential. So Lisa was really unique and became a star in our Shredding.
Absolutely, and very proud of her work there and proud of earning that paycheck. And I think that's a great point that you bring up, that really the Northeast Arc looks to support people across the arc of their lives and in all areas of their lives, supporting their goals in employment, residential goals, friendship development, recreation, family support was really grown tremendously under your administration as well.
When the state began institutionalizing the state schools, we contracted with the state to develop a number of residential programs and day service programs. And as a result, families who had always kept their disabled child at home came to us and said, look, so much of the Arc focuses on people coming out of institutions, we're feeling kind of left out.
And as a result, we said, well, we're going to develop family support programs. And the first one was a recreation program. And after the first two years in that program, we won a National Arc Award for our recreation services. So that's how family support services began. And from that recreation-type focus, we developed a whole range of other services and supports for families.
Starting at early intervention from birth on--
Right.
--to get kids that best start possible.
We were hoping that we could work ourselves out of business. If we focused on children very early who had the need for early intervention services, maybe they wouldn't develop the kind of limitations that a lot of the older folks had. Many of the older folks had come out of institutions where they were maltreated and as a result had serious issues. But we felt if we started early, maybe we could avoid that for a lot of kids.
And now we're lucky to have the Cape Ann Early Intervention Program based in Beverly and the North Shore based in Danvers at the Center for Linking Lives. I think it's a nice segue. You had mentioned deinstitutionalization. And it really brings up the point for me that as being a part of the Northeast Arc, you're not just a part of an agency, you're really part of a movement. And you were really right at the forefront of that movement for community-based services. Can you take us back to the day?
I wanted to focus on more than just the day-to-day operations. It was important to see services for people with developmental disabilities expand in the state. So I focused a lot of my attention on the state budget, seeing if we could expand the resources for programs and services.
I was very fortunate that Fred Berry, who was a Senator from Peabody, had worked for the Arc. And I knew him very well. And as a result, we were able to try and move the state budget in the right direction with the various funding sources. Probably the most important one was the PCA program,
Personal Care Assistance Program, yeah.
Yes, I'm sorry. I had a friend, Ed Roberts, who was the executive director of the State Rehabilitation Agency in California. And one of the things that he and his staff frequently talked about was helping people with disabilities manage their own services and manage their own lives, as opposed to professionals doing it for them. So we decided that we were going to try and expand into the personal care area.
Up until that point, the state had a program, but it was mainly focused on people with physical disabilities. So we kind of went after that and got the state to agree that anybody with a disability should be eligible for the program, not just physically disabled people. And as a result, we were the first agency to receive funding for personal assistance that was not an agency focused on people with physical disabilities. And we went out and tried to recruit as many people as we could to the Personal Care Program. And over time, that became a major focus of the Arc while I was there.
Absolutely. And I know today we're serving about 5,000 people through the Personal Care Management Program. And for folks who might not be as familiar, those are really the services that allow people to stay in their own homes, to be able to get out to their programs in the community or to employment in the community.
And manage their own care. It's a self-directed model, which we were very happy with, very proud of.
And choosing and hiring their own assistants.
Exactly.
Because it's such personal work.
They become the employer for their caretaker, as opposed to an agency employing somebody and sending them in to help the individual. So they get to recruit and hire and supervise their own caretaker. And if they're not happy with the care they're getting, they can fire them.
Every milestone that's been met across the decades for services, it's really taken a lot of work, a lot of advocacy, and a lot of collaboration. I know you've had leadership roles with the Arc of Massachusetts and the Association for Developmental Disability Providers, the Providers Council. It's really been a collaborative effort.
Well, it has been. I mean, there were other organizations besides the Arc that were serving people with disabilities. And we all felt the needs for resources from the state and trying to develop state policies that were supportive. So we not only needed resources, financial resources, but we needed policies that were supportive to serving the people we served. And as a result, I was involved in a lot of advocacy efforts, the Arc of Massachusetts being probably a primary focus for people with developmental disabilities.
Absolutely. And you're being modest because you're saying "a seat at the table," but even going back to the very beginning of community-based services, it wasn't just a seat at the table. Sometimes it was you and a colleague from the Arc of Massachusetts really writing down the words to pass along to the legislators at the State House to get things moving.
Well, one of the focuses I had was closing the state institutions. I was very anxious to see people come out of the institutions into community programs where I believe they could be much better supported and their lives could be much better by being part of the communities that they lived in. The resources that was being spent on institutionalizing them-- I think there were seven or eight state schools at that time-- could be much better spent in community on services and support.
So one of the focuses that I had was to try and work with the various advocacy organizations to get the state to close state schools. Finally, Mary Lou Maloney, who was the executive director of the Arc of Massachusetts at that time, we were meeting and we said, why don't we just do something about it? Let's draft some legislation that would close Belchertown State School and we'll start there.
And fortunately, Senator Berry was interested in hearing our views. We drafted a piece of legislation. [INAUDIBLE] Villa was their advocate at the state house. So we were in her office and we said, let's just walk across the street with this legislation and see what we can do. And Fred Berry was willing to listen to us and took it on as a cause. And he was able to push it through.
I think that's a great point in the evolution, again, in the start of community-based services. And I know you were very involved along with the Arc of Massachusetts and some of our other colleagues around the state in some of those first movements to close state institutions, to bring folks out into the community to be able to live in the neighborhoods of their choice. Can you talk a little bit about how that evolved and the work that it took to make those shifts in public policy and that, unfortunately, I mean, it has taken lawsuits? You don't like to think that it would, but the Arc has not been shy to do what's needed.
In addition to the support we had from the legislature, we also had to deal with opposition from some parts of the community. Particularly families who had their individual children placed in state facilities, they were really afraid of the change and transitioning those folks into community-based services. And there was a lawsuit filed to prevent that transition. And Judge Tauro, who was I think a Marblehead resident, was the federal judge who was overseeing that case.
I think the turning point was that he took a trip out to Belchertown State School to see for himself the conditions and the situation that people found themselves in. And he was so appalled by what he saw and it was so upsetting to him that he saw how horrible conditions there and people really in dehumanized states that he came back and issued orders in terms of the lawsuit to move it forward. And I think it's the result of that lawsuit that the state was really able to move forward and move a large number of people out of the state facilities.
So that was really the start of the growth of the community-based system. Because there's funding to support a system, but not necessarily two systems.
Right, the key was that the resources that were going into the state facilities to provide the operation of the state schools to house people there had to transition from the state schools into the community to develop community living situations for people. And that was a tricky situation for the commonwealth to manage and took a long time.
And there was a great deal of difficulty. The numbers always didn't line up. Sometimes they had to move money from one part of the state to another and move people from one part of the state to the other. But it was the best thing that could have happened.
And so Belchertown was the start of the closures during your tenure as the head of the Arc. And I believe that Fernald was the last institution to close during your tenure.
That's absolutely right. I was involved in the whole length of that effort to move people out of state facilities. Belchertown was the beginning. And we were involved with the State Arc in moving that forward with our friend Fred Berry supporting us in the legislature. And over the years, the various advocacy organizations, particularly the Association for Developmental Disability Providers was advocating very strong for the closure of state facilities. And when it came to Fernald, which was the last one, there was a very strong parent group at Fernald who was in opposition.
And they were threatening legal action to stop the state from closing the place. And the state was really having a difficult time making up their mind whether they were going to continue closing facilities and close Fernald. And I was involved at a meeting in the State House with a representative from the governor, the governor's counselor, who was really trying to figure out whether it made sense to close Fernald or keep it operating. And the meeting was not going well for the advocates.
And I told them about a situation that we had recently experienced that I think turned the tide. We had recently taken an individual into our home in Middleton, which was a home for severely disabled individuals, both mentally and physically disabled. And they had referred someone to us from Hogan Regional Center, who I described as an individual who had lived at Hogan for a number of years and was in a car accident, a serious van accident, and broke his neck.
And it was really a tragic situation. When he recovered sufficiently enough to go back into some kind of program, the regional director came to me and said, look, we can't serve this person in Hogan anymore. His disability is too severe. And I said, well, we'll serve him in Middleton House. We can do that. We have people who are just as difficult to provide services to.
So they referred him to Middleton House, and he thrived. Over time, he became very, very happy there and did very well. So I think that story convinced the governor's counselor to go back to the administration and say, look, we need to move forward with this closure of Fernald. And they did. And Fernald closed. And that was the last state facility that the state shut down.
That was the power of sharing that story of serving folks with complex needs quite well in the community.
Yeah, there was a lot of discussion about how difficult these people coming out of the state facilities, particularly Fernald, were going to be to serve and that was the only place that could meet their needs. And we were able to show that that wasn't true. There were community programs that were equally as effective in serving them and also provided them with a better quality of life.
I think that's something that people may not be really aware of, the range of abilities and the range of needs that Northeast Arc can address and that you had been addressing for so many years. I know that continues today, that the organization looks to see what continued unmet needs people have and how the organization can address it.
I think that's been a hallmark of the Northeast Arc for a long time, that we didn't just go with the traditional services to developmentally disabled adults, but we tried to expand the programs and services in ways that met unmet community needs and unmet needs of different populations. And I think a lot of what the Arc does has been cutting-edge and groundbreaking in that.
And the importance of advocacy in ensuring that those opportunities are available for people in the community?
Advocacy is critical. You can't make any progress without strong advocacy efforts. Because you have to convince people that what you want to do to make change is the right thing to do. And if you don't advocate for them, if you don't advocate for the funds to support programs and the staff that provide services, you can't make any progress. The system won't move, won't change.
Absolutely. And if you're going to be changing lives and supporting people in discovering what they can do and giving the opportunity to thrive in the community, you don't know if you don't give them the chance.
Absolutely right. And fortunately for me, I had a terrific team to work with. My program directors and my managers were first class. And I couldn't do half of what we did while I was at the Arc without top quality staff behind me. From direct care staff to program directors to senior managers, we were a terrific team. And I could always rely on the people around me to do what was necessary and do what was right. And I think the results speak for themselves.
Well, there's another big program of the Northeast Arc that you started that I think also people may not be as familiar with, and that's the clinical services. How did clinical services come about at the Arc?
As we went along and were in kind of an expansion mode, we began hearing from families in our early intervention program, which by that point was pretty large and serving a lot of people. But we heard from families that some of them couldn't get the supports they needed. There was a program in the state that would allow people to get nursing care in the home for children who were very severely disabled and needed nursing.
And that was one way of keeping them out of institutions. So we decided we would develop a program called Northeast Clinical Services that focused primarily on providing nursing supports to families who had severely disabled individuals living in the home with them. And primarily they were children, but we did serve some adults in that program as well.
It's an incredible program and still serving so many families across Eastern Massachusetts. And really, again, enabling the kids to stay home, enabling the kids to stay in school. Really very impactful services, so wonderful, wonderful services. And one of the other things that we've seen evolve over time is employment. In the early days, facility-based employment was the best practice. And you really, along with Senator Berry, started to usher in a big focus on community and a focus on partnership with businesses in the community. Can you talk a little bit about that?
Fred Berry, at the time I came to the job, was the Director of Heritage Industries. And he subsequently left to become a State Senator. But he and I were able to work in tandem to develop employment services for the people we served. And as a result, the focus was on sheltered work. We probably had one of the largest sheltered work programs because we were able to recruit work from a variety of companies.
The focus gradually shifted to a more community-based work program. And we got on board with that and did as much as we could to find community jobs, work with employers around the North Shore to place individuals. And the focus really was to train them and support them and convince the companies to give them a shot and then be available to the companies to support the company with any issues they had bringing a person on who might have some limitations.
There were a few standout companies that we worked with. One was New England Biolabs. And their president, Jim Ellard, was wonderful to work with. In the early days, he employed two of the individuals who were at originally at Heritage and over the years became very close friends with one of them, kind of almost brought him into his family. They were very close. They'd go to sporting events together and they'd celebrate holidays together. Terrific relationship that Jim Ellard had with David McGray.
It really was an incredible evolution to really seeing that full inclusion and what a valued member of that New England Biolabs team he was for 30 years.
Unfortunately, David recently passed away.
And a wonderfully warm turnout from his New England Biolabs-- really, I would say his New England Biolabs family for that celebration of David's life. And really, it was so wonderful for Jim Ellard not only to be an employer himself, but to help us through the corporate partnership program that you established to raise awareness among other employers across the region about the benefits of hiring folks with disabilities.
Right, we were able to speak with a lot of employers and even went to the Chamber of Commerce meetings and talked to them about the value of hiring people with disabilities. And I think we had some pretty good results.
And the fruits of those labors are beautifully seen today, with folks going through the Breaking Grounds Café Training Program and being hired by coffee shops around the whole region and folks in retail and manufacturing. And it's been exciting watching that launch turn into a broader-based effort. We had also talked about the evolution in residential services and the times in the early days when there really was not support and really watching that change over the years. Can you share a little bit about the change you saw over the decades?
When I came to the Arc, I think the Arc had two homes, each one serving eight people, and several recently established apartments with maybe four people in them. So it was not a very large residential focus at that time. Fortunately, we had a very supportive board of directors and were able to convince them that we should go out and buy homes and staff them and bring on more people.
It was at the time that the state was deinstitutionalizing the state's schools, the state's facilities. And there were plenty of opportunity to house people and provide programs for them, both residential and day services. And as a result, at one point, I think we had around 30 sites.
And you had some surprising and concerning resistance to the opening of the Salem House.
Yeah, that's right. When I came to the Arc, the agency, the board of directors had purchased a house in Salem about three years prior and had never been able to occupy it because of resistance from the city building inspector, who was interpreting a ruling at that time that no more than three unrelated adults could live together. There was an effort to eliminate hippie communes at the time, and any more than three people were not allowed to occupy. So we weren't able to get an occupancy permit from the city for three years.
And the board of directors, to their credit, decided to sue the city and was in court for a number of months and finally prevailed with a landmark decision that enabled community residences all over the state to open in communities and not be hampered by that kind of a ruling from the local building department. So that was something that the Arc was very proud of. And I think we were instrumental in creating a smoother path for a lot of agencies in addition to us to develop community residences.
Yeah, I think it's important not to lose sight of that history and how hard those battles were to fight to make those changes and to create opportunities for inclusion in the community.
Yeah, in the early days, we had several community fights, if you could call them that, that involved resistance from local communities to establishing residences. They were afraid of who was going to move in. They didn't know much about developmentally disabled individuals. And in some cases, they were afraid of who was coming into the neighborhood. And fortunately, that has changed over time. Now, generally, people are very welcoming.
And I think the Arc and you have played a big role in making that change. Because community education is such a big part of our mission.
Yeah, it certainly is.
And that Salem House is actually a great example of how things have evolved and how relationships can grow. Because I remember before you left, when that house was being converted to independent living suites, what an incredible welcome we received from then mayor Kim Driscoll.
That's right. I mean, that program house went through such a transition over the years, from being one of the first community residences serving eight individuals, and over the years transitioned into basically an independent living model for individuals in their own apartments who received supports based on what their individual needs were, rather than a program model. So that was really exciting to see that evolution.
Absolutely. And I know some of the folks living in those suites now. And they're working during the day, very involved in the community, active members--
Yeah.
--really connected to the neighborhood and the city.
What was really unique was how far the city evolved over that period of time. Mayor Driscoll was terrific in supporting us and very interested in seeing that program change into independent living. And the support from the city was very important to making that happen. And it's interesting to see how far we came over that tenure of 25 years or so. From being in court against the city of Salem to being supported by them in terms of this transition, our relationship with the city has become terrific.
Absolutely. And that brings to mind another one of the big program developments during your tenure, which was the opening of the Autism Support Center and the funding of autism services and being able to bill insurance for autism services. And you had some great partners in that effort.
We developed what we called the Autism Support Center for families. They could come and meet with our professional staff, take advantage of various resources that we developed and work with our staff to try and make life a little easier for them to maintain their family member at home.
Jerry, in addition to the partnership with government, Northeast Arc relies on support from businesses and our families to meet our mission of inclusion and opportunity. The Mike Frangos Commodore Golf Tournament, now in its 55th year, is a great example of that. Could you share how the tournament started and how you grew it during your tenure?
When I came to the Arc, the tournament had already been in existence for five or six years at least and was well supported by the business community on the North Shore. A lot of golfers love to be in the tournament. It was kind of a major event, even though it was much smaller. It was organized by Mike Frangos, who ran the Commodore Restaurant in Beverly for years.
So when I came, the committee that Mike had did all the work, did everything around the golf tournament. The Arc was simply the recipient of the proceeds. My biggest role when I first came to the Arc was go to the dinner, the banquet at the end of the tournament and have a prime rib dinner on Mike and collect a check and say a few kind words. But that was my involvement.
And then at one point, Mike called me in and said, look, I've been doing this for a long time. I need to step back. And we're going to cease after this year running the golf tournament. Well, that was a shock. Because we were so invested and dependent on the proceeds from the golf tournament. So I talked to Mike for a while and I said, look, we've got to figure out a way to keep this going. It's important.
He said, well, there is a guy that plays in the tournament who might be interested in helping out. He's the president of the Boston Private Bank and Trust Company. His name is Mark Thompson. So that was my introduction to Mark Thompson, who became a terrific supporter, both in terms of the golf tournament and many other things that he did to support our programs and services.
Mark ran the golf tournament and attracted a lot of higher level golfers from the business community in Boston. Mark got very invested in the tournament and eventually very invested in the Northeast Arc, becoming our board president for a couple of years and then became the advisory board chair after that. He's been terrific for many, many years in support of our services and programs.
Yeah, and we won't tell our current chair. But then after Mike's tenure of 25 years, Mark chaired it for 25 years. So we won't tell Charlie Brophy that that's the tenure that he needs to look forward to, our current chair.
Yeah, he's got a few more years to go.
He does. He does.
And don't let him off the hook.
He does.
[LAUGHTER]
So it's been an incredible partnership, raising over $3.7 million over the life of the tournament, which is really incredible.
It's the longest tournament, golf tournament supporting a human service organization in the country, as far as I know. And we researched that at one point. So that is really something to be proud of. And the tournament continues to do well and involves a lot of the business community, in terms of educating them about our programs and services and eliciting their support.
Right, and it could be a start of a great relationship that could lead to employment for the folks that we support.
And it has in many cases.
And we are looking forward to seeing Mark at the tournament coming up this year on September 16 presenting some awards, the Mike Frangos award and we're having a new award this year in memory of Trip Hargrave, who hosted us for 25 years at Myopia and passed away suddenly in November.
Oh, I'm sorry to hear that.
Yes, yeah.
Yeah.
A lot of great support, a friend of Mark's, someone that Mark Thompson had brought in to the tournament, so.
Yeah, the Arc was very fortunate to have the support of Myopia Golf Club for all those years. It was a premier golf experience for people. And a lot of people would never be able to play there if they were not in that tournament. So it was a real draw.
Yeah, an iconic course.
Yes.
Yeah. As we celebrate our 70th anniversary, you've taken us so far. We've come so far. So much has changed, so much has gotten better. When we think ahead to the Arc's 100th anniversary a generation from now, what would you hope to see for the families of the Arc at that time? What world would you like to see for the folks with diverse abilities that we support in their families?
Well, that's a tough one. Obviously, programs, services, supports will evolve over time, as they have. And I think that it would be great if some of the programs and services worked themselves out of business. I don't have a crystal ball, but I do think that services need to continue to evolve. People need to have the opportunities to be more independent and services need to be more inclusive and more family focused. There's still many, many unmet needs in the community that need to be worked on over the next 25 years.
Absolutely. And maybe technology will be a part of that solution.
I hope so. I hope so. But technology, I think, can only go so far. You need the human element. We're not dealing with widgets in a factory.
Absolutely.
We're dealing with human beings. And you're going to need the human element, the relationship with a staff person and a disabled individual, relationship with a family and staff to really see significant progress, in my mind.
Well, thank you so much. It's been delightful. Any final words that you'd like to add?
It's been fun. [LAUGHS]
Thank you so much, Jerry. It was wonderful to speak with you and share so many incredible memories about the Northeast Arc and the field of Disability Services. We want to thank Peabody TV for providing our wonderful recording space. And All Things Disability is made possible through the financial support of the Changing Lives Fund, which was created through a gift from Steven Rosenthal. To learn more about the Northeast Arc and to find past episodes of this podcast, please visit ne-arc.org. Thank you.
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