Intro: Welcome to The Death Readiness Podcast. I'm Jill Mastroianni, an attorney with more than a decade of practical experience in trusts and estates, here to demystify the complexities of planning for the inevitable. This podcast is your guide to navigating estate planning and end of life preparation with clarity, compassion, and empowerment. Let’s spark the conversation, shift perspectives, and explore how to embrace death readiness together, courageously and thoughtfully.

Jill Mastroianni: (00:34)

Becoming a parent is always life-changing, but when a child is born with special needs, the journey can come with unexpected challenges, emotions, and a steep learning curve. 

My dad, Carmen Mastroianni, faced that reality in 1977 when my older brother, Dan, was born with Down syndrome. 

At a time when resources were scarce and support networks were limited, he and my mom had to figure out many things on their own—navigating not only the medical and educational systems but also the emotions that came with raising a child in a world that was not always welcoming.

In today’s episode, I sit down with my dad to talk about his experience raising a child with special needs, advocating for inclusion in schools, sports, and the community, and making sure Dan had every opportunity to thrive. 

As a parent, he faced tough decisions—from fighting for education rights to making long-term care plans—and he’s here to share what he’s learned along the way.

This episode will be a little different from previous guest episodes—you’ll hear me jump in occasionally to provide context or insert Dan’s perspective, in his own words. I want to be clear that Dan gave me permission to share portions of an interview my daughter and I conducted with him, as well as certain aspects of his health information, both current and past, in this podcast.

Whether you’re a parent, a sibling, a friend, or simply part of a community that values inclusion, this conversation offers insights into supporting and empowering individuals with special needs. 

Part of that support and empowerment is planning for the future—including what happens when caregivers or family members are no longer around.

Understanding these experiences helps all of us build a more compassionate, inclusive, and prepared world.

I’m excited for you to join me for a conversation with my dad, Carmen Mastroianni.

Jill: (2:50)

Hi, dad. Thanks for being willing to join me on the podcast today.

Carmen Mastroianni: (02:55)

My pleasure.

Jill: (02:57)

As you and I talked about, we have coming up an episode in which I talk to an estate planning attorney who specializes in helping families who have individuals with special needs. And I thought it would be helpful to get the perspective of a parent who has a grown child with special needs so that we can kind of give listeners some context as to what that means if they don't have a child with special needs, or to let people who do have a child with special needs know that they're not walking this journey alone, and maybe to answer some questions that they might have along the way. 

So, Dan was your first child. I am your third. I remember you telling me that before Dan was born, you didn't ever think of the possibility of having a child who was not perfectly healthy. It just didn't cross your mind.

Carmen: (03:58)

That is correct.

Jill: (03:59)

I know that we've never really spoken about the details of Dan being born, but I know that him having Down syndrome, it was a surprise, especially in that time. So that was 1977. What did that look like at that time? What was that experience like?

Carmen: (04:21)

Well, first of all, we had waited six years before we decided to have a family. And my motivation was to be somewhat financially secure because I grew up with my parents always talking and worrying about money. And I didn't want my children to have to deal with those kinds of issues. And after we started making some money, we decided to start a family. 

And mom's pregnancy was perfect. She was happy. She was healthy. No issues whatsoever. And then on the morning of August 7th, 1977, she gave birth to your brother. After she gave birth, she said, “you can go home, you've been up all night.” So, I went home, and I remember distinctly, I was doing pushups, and the doctor called and he said, “I think you have a child with Down syndrome.”

Jill (05:18)

Did he use the words Down syndrome?

Carmen: (05:21)

He did, and I didn't know what it was. Then he said, “Mongoloid,” which was what they used to call it before Down syndrome. And then I knew. He says, “but we're not certain, and we need to run some tests, so, we're not going to say anything to your wife.” So, I went through two days of people going to the hospital, taking pictures. So, after two days, the doctor called and said, “Yes, it's confirmed. Your son has Down syndrome.” So, then the doctor met me at the hospital, we told mom.

Jill: (05:53)

Before we continue, I want to step outside of the conversation with my dad for a moment. When I first heard my dad describe how he and the doctor discussed my brother’s possible diagnosis without including my mom—who had just given birth—I found it unsettling. I would expect a mother to be part of such an important conversation about her child. 

I do realize, however, that societal norms and expectations were different in 1977.

I went back to my dad after this conversation and asked him about the fact that the doctor, who I confirmed with him was male, bypassed my mother with his initial concerns about my brother’s health. My dad agreed that it seemed odd in retrospect.

51 years ago, and only three years earlier, in 1974, the Equal Credit Opportunity Act finally allowed women to open credit cards and take out loans without needing a male co-signer. Although Roe v. Wade established a constitutional right to abortion in 1973, reproductive rights have remained a topic of legal and political debate for decades. We know that Roe v. Wade was overturned in 2022.

Still, the broader point remains: in 1977, conversations about women’s rights—particularly in medical and family decision-making—were still evolving. As they are today. And, the medical field often viewed fathers as the primary decision-makers, especially when it came to difficult medical conversations. 

My mom was excluded from the initial conversations about my brother’s diagnosis. Because I cannot include my mother in the conversation today—she passed away in 2012—I’ve chosen to remove some of the details regarding how she was told about the diagnosis and the limited events immediately following. 

The conversation with my dad picks up again with my parents bringing Dan home from the hospital.

Carmen: (08:05)

So, we go home, and someone had said to me, “Find an early intervention program.” And this was August and many of the not-for-profits closed for the month of August.

Jill: (08:17)

I think the other thing I just want to interrupt for a second, is 1977, there was no internet. You weren't Googling anything. No. You were, I assume, calling phone numbers that maybe the hospital gave you?

Carmen: (08:31)

Yeah, I don't quite know, but I left messages all over the place. Probably the hospital gave me some numbers. And finally, I get a call back from the early childhood education center and they said they had an early intervention program, and they would send someone to our house on a particular day. It was probably 10 o'clock in the morning. So, I, I didn't go to work that morning, and then Pam Williams shows up and it changed everything.

Jill: (08:59)

So, Pam Williams, just for context, is a very good family friend. I've always known her as someone who's been an integral part in my life.

Carmen: (09:13)

Right. So, Pam walks in and mom just became an entirely different person. She really liked Pam a lot. They got on the floor and started playing with Danny. From that day forward, mom was great. So much so that she ended up going to work for the Early Childhood Education Center in their early intervention program. So, she would meet with new families of children with Down syndrome and help them through the process.

So, she became a real advocate and helped a number of families. And that's where she shared the job with Nancy LaRocca. They were very close friends. But it was really Pam that turned it all around. It was kind of a mini miracle.

Jill: (09:55)

Getting in touch with Pam, was that the extent of the resources that were available to you at that time?

Carmen: (10:03)

Yes. We did meet with a geneticist, but I don't even remember what he told us. But yeah, that was basically it. Finding an appropriate pediatrician, and working with Dan. And then Alyssa came along and then you came along.

Jill: (10:18)

I remember you telling me recently, then also I remember this back when mom got sick, that you have very good coping skills. You don't necessarily know where they came from or how you developed them, but that you're fortunate to have them considering, you know, before Dan was born, you were drafted into the Vietnam War. And then Dan was born, and of course you had to just keep moving forward. How did you feel though, even though you presented, you know, a certain persona, how did you feel, and how did you think your future would be impacted?

Carmen: (10:58)

I really wasn't worried about myself. It was focusing on Dan and your mother and making sure that they were happy and had everything they needed to help Dan achieve his potential. So, it was really just my fatherly instincts to take care of my son and my wife. And that's what I focused on.

Jill: (11:20)

We talked about earlier about you not realizing, or obviously you knew it was impossible, but it not being top of mind that you could have a child who was not perfectly healthy. What types of health care concerns did Dan have? And separately, did that change your view of the health care system at that time?

Carmen: (11:43)

It did. Dan had severe respiratory problems. When he was two, his respiratory problems were aggravated at night when he was sleeping. So, he couldn't lie down. He'd have trouble breathing. The pediatrician didn't know what to do. So, we eventually, when it got very bad, spent a week in one of the hospitals in Schenectady. And nobody could figure out what was going on. I mean, every night people were observing him, and he was in an oxygen tent. 

Now, Alyssa was just born and that was difficult. And essentially after a week, our pediatrician told us to take him home and he's probably going to pass. And somewhere along the line, I heard of this ear, nose, throat specialist at Children’s Hospital in Boston, Dr. Healy.

Jill: (12:37)

You were living in Schenectady, New York, or Rexford, New York at the time.

Carmen: (12:42)

That was Rexford, yes. So, I called Dr. Healy's office at Children's Hospital in Boston and explained what was going on. And he says, “Fly down immediately.” I'm not sure if I spoke to him or someone in his office. So, we flew down. My mother and sister took care of Alyssa. She was an infant.

Jill: (13:03)

And Alyssa, she was healthy, correct, when she was born?

Carmen: (13:07)

She was healthy. Mom was breastfeeding her, but because we had to go to Boston, that didn't work out. And so, Dr. Healy examined Dan, said “his airway is very small, and his tonsils and his adenoids are very large. And when he sleeps, it gets worse. And he needs to have his tonsils and adenoids taken out immediately, or he's not going to make it.” And I said, “you know, we just spent a week in the hospital in Schenectady. How are you so certain?” And he looked at me and he said, “Mr. Mastroianni, all I do is correct other doctors' mistakes. We need to do this immediately.” So, we did the surgery. Dan was in intensive care for a week.

Jill: (13:55)

And you and mom, you were both in Boston.

Carmen: (13:58)

We were both in Boston. And I was watching children come into intensive care who had very serious operations. And they spent a day, and they leave. And we're still there. Anyway, he recovered. Oh, they also said before we left, “we found a hole in his heart. So, you don't have to deal with that immediately. But we'll give you the name of a cardiologist in Albany. In a year, you should get that looked at.”

Jill: (14:27)

So can I just back up for a minute because I recall that there was another family who had a child who had Down syndrome about the same age as Dan around that time. And that child passed away. Was it because of blocked airways? I don't recall the details. The father maybe brought Dan French fries in the hospital?

Carmen: (14:50)

Yes, he worked as an orderly at the hospital. They were both immigrants from Italy and their child died from what Dan was suffering from.

Jill: (15:01)

And did you know them before Dan entered the hospital?

Carmen: (15:05)

I think mom helped them when their child was born. So, she knew them. And it was very difficult for him to visit Dan because he had already lost a child. I think it was a little girl with Down syndrome. So, we became very good friends with them. Very, very nice couple. They had a couple other kids after that.

Jill: (15:27)

Okay. So, I want to go back for a second to being at the doctors in New York and the advice being just to take your child home and let him die. Did you think that maybe they were right? What were you thinking?

Carmen: (15:46)

I did not think they were right. I felt that there was someone out there that could help. And I had heard of Dr. Healy. I can't remember how. And I just called him immediately. And we were probably on a plane the next day. So no, I did not accept... We made a poor choice in a pediatrician, obviously. We found someone else after that.

Jill: (16:09)

You also mentioned that Alyssa, who is in between me and Dan, she was an infant when you guys had to go to Boston. Were there any special considerations that you had taken into account in deciding whether to continue having kids beyond having Dan?

Carmen: (16:28)

Yes, we had to make a decision, did we want to have an amniocentesis? And we concluded we didn't know what we would do if the diagnosis came back, that either you and your sister had Down syndrome. I said, “but we should know, and then we'll be prepared for it.” And so, mom had the amniocentesis for you and your sister. And obviously, you were both fine. So, we never had to face that decision, but I felt that we should at least know and then prepare ourselves for it.

Jill: (17:02)

I do remember talking to mom about this once when I knew that she had the amniocentesis. And I asked her what she would have done if it turned out that either of us had Down syndrome. And she said she never had to make that decision, so, she didn’t.

Carmen: (17:19)

Correct. It's a difficult decision. I mean, Dan is just a beautiful person, but it's not easy for him. You know, he's had to struggle his whole life. So, as far as I'm concerned, it's really about the child's future and how you can make that child, you know, achieve their potential and live a happy, healthy life, and a safe life.

Jill: (17:49)

When April and I were there over the holidays, we interviewed Dan, and I'll talk about that more a little bit later. But when I asked him as part of that interview how he thought having Down syndrome affected his life, he said, “I don't think it affected me at all.” So, he certainly doesn't view his life as being one of struggle. 

(18:15) I'd like to step outside this conversation to include a short clip from when my daughter and I interviewed Dan just a few months ago. 

Jill: (18:24)

How do you think having Down syndrome has impacted your life?

Dan Mastroianni: (18:25)

Me having Down syndrome. I mean, Down syndrome to me, you know, it's like a chromosome. I mean, it doesn't really affect me, because I still have a great life.

Jill: (18:42)

Now back to the conversation with my dad.

Carmen: (18:45)

Well, once Dan and I were with your sister and she was suggesting that I get a handicap sticker for parking. And I said, I don't need one. And she kind of said, “well, yeah, but Dan…” and Dan very forcefully said, “I am not handicapped. I have Down syndrome.” So, he did not view himself as a “special needs person.”

Jill: (19:06)

I want to go back a little bit to Pam Williams because not only was Pam a very big part of our lives and still is, but also her husband, Hal Williams. And if I remember correctly, mom and Pam met, but then you and Hal met separately, not knowing that your spouses had already met.

Carmen: (19:35)

I was a banker and Hal was a client. He was president of a major not-for-profit in Albany. So, I was financing that not-for-profit. So, I had a professional relationship with Hal. One day he called looking for a charitable contribution for a group home. Back then when group homes were just beginning to open. And I said, “sure.” And I explained that we just had a child with Down syndrome.

And he said, “Oh, I have a brother with Down syndrome.” At that time, his brother Mark lived in Seattle. So, he asked if I was getting help. I said, “Yeah.” I said, “We found this great organization, their Early Childhood Education Center. And this gal comes over a couple of times a week, early intervention. He said, what's your name? I said, “Pam Williams?” And it turned out to be his wife.

Jill: (20:30)

Mm-hmm. Yeah, that it's just an interesting coincidence.

Carmen: (20:35)

Yep. She had written a book, by the way, that was entitled, God Does Not Make Junk, something like that.

Jill: (20:46)

Okay, I'll have to ask her about that.

Carmen: (20:48)

Yeah, it was really helpful.

Jill: (20:52)

Do you think developing a relationship with Hal and Pam changed at all how you viewed your future with Dan?

Carmen: (21:02)

Not so much me, but it had a major impact on your mother.

Jill: (21:06)

I, being the youngest of her three kids, all I ever saw was her advocating. You know, and I remember you saying at her memorial service that she would actually go into schools with other parents and sit in on the IEP meetings for their kids. Can you tell me a little bit more about that?

Carmen: (21:35)

Yes. So, back then there it was called Committee of Special Education... I forget what these committees were called, but many parents were having difficulty getting the resources that they needed for their child.

Jill: (21:50)

And I think that's still, today still that happens.

Carmen: (21:53)

Yes. So, mom would go in as an advocate. I'll tell you a side story. One of the gals that was a secretary that worked for me at the manufacturer's handover came into my office one day, and she had a special needs son. And they were having difficulty getting the services that they needed. She was really distraught. So, I called mom. And mom asked when the meeting was. And mom says, “I'll be there.”

She put a recording device on the table, which I guess was a bit intimidating for the educators and got all the services plus additional services that this woman was looking for. And I think she did that a number of times for families and their special needs child.

Jill: (22:26)

Mm-hmm. Obviously, she and you needed to do those sorts of things for Dan. And I don't remember very much in terms of his earlier education. I know when we moved to Long Island, he went to a different elementary school than Alyssa and I went to. Do you remember what the reason was for that?

Carmen: (23:07)

So, when we lived in Schenectady, Dan went to a regular school. He was mainstreamed. Maybe it was kindergarten. So, we expected the same services from the Sayville School District.

Jill: (23:22)

When you said, “the same services,” what services was he receiving in Schenectady?

Carmen: (23:27)

He was just mainstreamed in a regular classroom with an aide.

Jill: (23:30)

Was there just an aide in the class helping or was the aide specifically for Dan?

Carmen: (23:35)

Specifically for Dan.

Jill: (23:37)

So that would have been probably kindergarten and first grade.

Carmen: (23:41)

I think so. I think so.

Jill: (23:43)

Okay. And then you assumed that that was how it was going to be when we moved to Long Island. So that was Sayville, Sayville, New York.

Carmen: (23:52)

And Sayville said, “There's no place in our school for your son.” And they directed us to another school, which we went to visit. You know, it was all special needs children who had some rather severe, you know, issues. And we said, “No, Dan's not going to this school.” And so, we had to advocate very, very strongly with the school, probably even threatening legal action.

And finally, they acquiesced and said, “Okay, he can come to our school.” How he got to that one school and you guys were in another school, I don't remember. And then we had an aide, and Dan did quite well. 

And I think, and this is advice I would give any parent, it's much better to have your special needs child educated in your neighborhood school. This way all the children know him or her and it's just much easier. So, Dan, you know he struggled academically, but his listening skills were very good and the kids were nice to him as far as I know.

Jill: (25:05)

Well, do know he did struggle with, you know, every school is going to have kids who are unkind to someone who is different, whatever that difference may be. And I know that that did exist for him. But, you know, obviously I was actually never in the same school as him because I was so much younger.

Carmen: (25:24)

Yeah, I remember no one would eat lunch with him. And Alyssa, who was on the swim team, made sure that she and her girlfriends had lunch with him. That was nice.

Jill: (25:38)

Okay. They were in the same school for maybe a year. Well, they were in high school together, too.

Carmen: (25:43)

Right. And when Dan got to high school, he became the manager of the football team, manager of the girls' softball team, manager of the girls' baseball team.

Jill: (25:54)

How did that happen?

Carmen: (25:55)

I don't remember, quite honestly. I think the football situation came through the Kolar family, friends of ours from Long Island.

Jill: (26:05)

Okay, and they had sons on the football team? The Kolar children and the Dolan children, they were all on the football team and they were very popular but very, very strong advocates for Dan, as well. So that certainly helped or reduced any kind of bullying that he might otherwise have because they were going to step in.

Carmen: (26:30)

Yes. Yeah, I mean, it was great because Tim Dolan was the quarterback and a good athlete, handsome, probably a ‘big man on campus.’ And I remember on occasion when he got his license, Tim Dolan, you know, they would drive to the away games or even to the local games and they would pick up Dan and he would drive with them.

Jill: (26:51)

Mm-hmm.

(26:54) I'd like to share Dan's perspective on his high school experience. So, here he is:

Dan: (26:59)

High school was a very good experience because I got involved with the Varsity football team. I had two excellent friends, Tim Dolan and Keith Kolar, who I was a high school with. They took me underneath their wing and those were very good times.

Jill: (27:25)

Again, back to the conversation with my dad.

Carmen: (27:28)

So, he had a very good high school experience. He had a full-time aid. His academic skills, he struggled, and we didn't push it. We felt it's more important to focus on his interpersonal skills and his social behavior. You know, money and reading and writing and arithmetic was just too difficult for him. And he still struggles with that to this day, but he's coped rather well. 

But socially, he's… He's wonderful, he's a very kind, generous, loving person.

Jill: (28:03)

I know that getting Dan involved in athletics or other activities, it wasn't always easy. And I know that he was an altar boy at the local church. But if I recall correctly, that was not without its difficulties?

Carmen: (28:21)

That is correct. We signed Dan up for altar boy's school. And they didn't want him there.

Jill: (28:29)

How did they communicate that to you?

Carmen: (28:32)

They told me. I forget the guy's name. He was a deacon in the church that ran the program. And we had a conversation that didn't go well. And I went and met with the Monsignor. Do you remember that church? I forget the name of it. 

Jill: (28:48)

St. Lawrence?

Carmen:

Yes, St. Lawrence. So, the Monsignor supported me and Dan. And we went through the program, and we decided that we would do once a week, the 7 a.m. mass. Which was attended by three people (Jill laughs). And I would sit at the front row giving Dan hand signals. 

One of the funniest experiences, the priest has this chair and Dan sat in that chair. But I remember there's one priest in particular, he was from India. He was very kind and very nice.

And I would sit there and tell Dan when to get up, when to sit, what to do. And it was very stressful for me. And it was stressful for him too. And like a Sunday mass, he didn't want any part of that. And after a while, we stopped. But he did it. And that was that.

Jill: (29:42)

And what about Baymen’s Soccer? That was the soccer league that we all played in when we were kids. And there is this wonderful guy, Val Winter. And he actually had a son who was older than me, but he had a daughter who was in the same grade as me, and I remember Dan being on his team. And of course, back then, I just really didn't think about whether it was difficult to get him on the team, or any of that. I just, you know, he was playing soccer like we were. 

But I remember you telling me, yeah, you always got your insurance from Val because you were so grateful, because he was an insurance agent, because he was happy to have Dan on his team.

Carmen: (30:31)

Yeah. It was called Baymen’s Soccer. I got the name of the president. I think his name was Joe D'Antoni. And I called him, and I explained the situation. He said, “No problem.” He said, “I got just the coach.” And that was Val Winter. 

But he also had another team that he played for as well. And that was a good experience. And one year, there was a penalty kick, and he scored a goal. And I don't know how the exact circumstances of that, but he scored a goal. And that was a wonderful experience for him.

Jill: (31:05)

How did you first get him involved in Special Olympics? I definitely remember going to a lot of Special Olympics swim meets and there were some other sports mixed in. I know there was some horseback riding along the way, but how did you first get involved with that?

Carmen: (31:21)

I think before Dan, I was on the board of Special Olympics. Also, before Dan, I financed one of the first group homes in New York State, which eventually became the organization that manages his group home today. So, I was familiar with Special Olympics, and we got him involved and he was an excellent swimmer. He really did very, very well with that.

Jill: (31:25)

And that's part of where me being a kid, sometimes I was a little bit confused because when we had a small pool, an above ground pool growing up and Dan and I would race in the pool and I was a very good runner, and he and I would get in the pool and I would swim as hard as I could and it would usually be a tie. You know, he was just that fast. 

And so, I just didn't even realize necessarily that some individuals who have Down syndrome might be more limited because he really was a very good athlete. And I remember even being much younger and being afraid to jump off the dock in the lake to come back to the shore and him making sure that I got back because I was worried about it.

Carmen: (32:39)

Yeah. Well, when Dan was born, we had an in-ground pool. So, he was swimming as an infant. And he was always very buoyant. But you know, we did swimming. We did weightlifting. We did horseback riding, all through Special Olympics. That was our challenge as parents, because you being a good runner, and Alyssa being a good swimmer, and Dan being good at Special Olympics… we almost needed another set of parents to attend all these sports on weekends and practices and all that. But we kept everybody busy. We managed.

Jill: (33:16)

You know, being a parent now, I do look back and because you never appreciate your parents like you should until you become a parent yourself. And I definitely see that from my perspective. You and mom both working full time and having three kids at home at the same time, all doing sports. I do look back and wonder how that actually worked. It did somehow work, but I am very impressed looking back at that time period with all that you guys had to do.

Carmen: (33:54)

Yeah, I mean, it's a total commitment. You have to be totally focused on being a parent. That's it. And so, we were totally focused on making sure that you guys had a good experience growing up.

Jill: (34:09)

Do you remember any kind of incident involving Dan trying to get a library card?

Carmen: (34:17)

Yes. So, mom took Dan to the local library.

Jill: (34:21)

Well, all three of us.

Carmen: (34:23)

Okay. And because he couldn't write his name on the little line on the library card, they wouldn't issue him a card. And there was a family that had a son with Down syndrome. They became famous as advocates. I think their son may have gone on Sesame Street.

Jill: (34:44)

Was the child Jason Kingsley? There was the movie with Tyne Daly, Kids Like These?

Carmen: (34:52)

Yes, so mom shared this library story with Jason's mom.

Jill: (34:57)

To give more context, let's take a moment to step outside the conversation. Kids Like These was a 1987 TV movie in which a couple has a baby who has Down syndrome. The mother of the child was played by Tyne Daly. The script for the movie was written by Emily Perl Kinsley, Jason Kingsley's mother and Allan Sloane.

According to my dad, in the movie, Tyne Daly complains of a frustrating day in which her son was denied a library card. This mention of the library card denial was inspired by my mother sharing the story of Dan's experience with Emily Perl Kingsley. I'm going to include a link in the show notes to what appears to be the complete Kids Like These movie on YouTube.

With that in mind, let's return to the conversation with my dad. 

Jill: (35:50)

Do you recall the details of, I know that he was originally denied a library card, but obviously he later had one. Do you remember what happened?

Carmen: (36:03)

I think your mother worked her magic and embarrassed the library to give them a card.

Jill: (36:10)

What I recall and it's vague, is kind of like a sit-in with all of us just sitting on the floor in the library and not leaving (chuckling) until he could get a library card.

Carmen: (36:22)

Oh really? I was not aware of that, or I had forgotten. That's interesting.

Jill: (36:26)

But that seemed kind of in line with something she would do. She was not afraid to have people look at her.

Carmen: (36:33)

No. And it all started with Pam Williams.

Jill: (36:38)

You mentioned earlier that Dan is in a group home. And this is a really significant part of planning when you have a child with special needs, is who is going to take care of your child when you're not around to do that. Can you explain to me what your and mom's thought process was in getting Dan into a group home? Was that a difficult process? What kind of considerations did you think about?

Carmen: (37:11)

Well, the organization that manages Dan's group home is called The Center for Disability Services. I mentioned earlier that I had financed one of the first group homes in New York state. The woman's name was Eunice Antonucci. And her goal was to get all these special needs folks out of institutions and into group homes.

Jill: (37:34)

So, was she the head of that organization, Eunice?

Carmen: (37:38)

Yeah. She was the founder. And then the name, I think it was Residential Opportunities. And I went on their board. So, I went on their board and did all their financing as a banker prior to Danny's birth. So, I knew all the players and I stayed in touch with them because we continued to finance them even after I moved to Long Island. 

So, Dan, on his own, watched you and your sister go away to college. And he felt that he couldn't live with his parents for the rest of his life. And he was the one that was pushing to go to a group home. Then I just called Residential Opportunities, which eventually changed its name. And we got Dan in.

Jill: (38:26)

Was there a waitlist? Because I know that they don't have unlimited capacity. I assume that there is a waitlist.

Carmen: (38:33)

I don't think they're opening anymore, group homes in New York State. I'm not sure.

Jill: (38:37)

Oh really? But it wasn't like you had thought about other options, right? You just knew, OK, this place is a good place, and we'll try to get Dan in. And then that was the extent of your plan, right?

Carmen: (38:51)

Yeah, I mean, the other option was he just stays with us for as long as we're around. And that didn't seem like a good option, because I didn't think it was fair to you or Alyssa. So, it turned out to be a very, very good decision. He's in a very nice home in Niskayuna, Schenectady, in a nice neighborhood. The home is well staffed and he's very happy there. 

And he goes to work every day. He works the laundry at a local nursing home.

Jill: (39:21)

It's a volunteer position, right? He folds the laundry?

Carmen: (39:25)

Yes. So, when we lived on Long Island, he had a job working in the laundry at a local hospital. I think it was called St. Joseph's. And when you're a special needs person, you're eligible for supplemental social security, SSI. And because he was being paid, it affected how much money he was getting. And it wasn't a lot of money, and it didn't make much difference to me, but there was a lot of paperwork involved.

Jill: (39:54)

Right.

Carmen: (39:55)

So, when he eventually joined the laundry at Baptist Nursing Home in Scotia, New York, I insisted that he not be paid, [but] work as a volunteer. Which did two things. It minimized all the paperwork. And secondly, as a paid employee, Dan was so conscientious he never wanted to take any time off. And I said, as a volunteer, you don't have to worry about that (Jill chuckling). So that worked out very well.

Jill: (40:24)

So, that's an interesting point that you make, because he does need SSI. He does need to be on Medicaid in order to receive his benefits. And you're very careful not to make him ineligible. But it's a very difficult system to navigate and make sure that you understand those rules.

Carmen: (40:47)

Well, all that money goes to the group home. And they do all the paperwork. So, I don't have anything to do with it anymore.

Jill: (40:56)

Oh okay, so the group home handles everything in terms of maintaining his eligibility. Just for anyone who's listening, is this a home that you privately pay for or is it government funded?

Carmen: (41:09)

It's privately funded through the Center for Disability Services. They do get money from the government, New York State in particular. I think the department is OMRDD, I forget what that stands for.

Jill: (41:24)

Before we continue, I wanted to step in and say that OMRDD is an acronym for a New York State agency and refers to the Office of Mental Retardation and Developmental Disabilities. Effective November 15, 2017, the agency's name was changed to remove the word ‘retardation’ and is now referred to as the Office for People with Developmental Disabilities, or OPWDD. 

Now that we have that clarification, let's jump back into the discussion.

Carmen: (42:06)

But it's a private not-for-profit. So, everyone who's in those group homes, the parents have signed over the SSI, and that's part of their funding. And they manage all that.

Jill: (42:19)

Although it's certainly not sufficient to run the organization?

Carmen: (42:22)

No. So, they're, you know, they have a lot of charitable fundraising, and they get a lot of money from the state. But that's become more difficult for them.

Jill: (42:33)

…to get funding from the state?

Carmen: (42:34)

Yes. 

Jill: (42:36)

So, the situation is a good situation for so long as it's available, I guess. 

Carmen: (42:43)

Exactly.

Jill: (43:02)

But Dan moving into this group home, it being his idea, it wasn't as if it was a seamless transition, right? It was different, just like any person going away to live somewhere new with new people, and there is an adjustment period. So, I didn't want to give anyone the false impression that he wanted to go, he was happy the whole time and everything was perfect. It's a transition just like, you know, all transitions.

Carmen: (43:15)

Exactly. It really affected me because I was always trying to make sure that he was happy and taking him to play racquetball and to various functions and all that stopped. So, it was very different. But we had to go into a home in Cohoes, New York, first.

Jill: (43:34)

Right, I remember that.

Carmen: (43:37)

That was difficult. It was eight people, four women and four guys, and it wasn't the most ideal situation. The guys were difficult. The ladies were very nice, so he spent most of his time with the ladies. So, he had to stay there for a couple years until we bought, or the organization bought and renovated the home in Niskayuna.

Jill: (44:00)

Okay.

Jill: (44:01)

Before we continue, I'd like to add Dan's perspective on his transition to living in a group home. 

Jill: (44:08)

Did you like living in the group home when you first left mom and dad's house?

Dan: (44:14)

I was nervous. I was scared, but I was at that age. 

Jill: (44:19)

How old were you?

Dan: (44:21)

I'm 47 now, probably about 24, 25. It was scary, but I was at that age that I felt like I had to make that change. Because you and Alyssa were going to college. I was living with mom and dad. I said, “Well, for how long am I going to do this?”

Jill: (44:43)

Right. And so, you were nervous, but was it something that you wanted to do, to move out?

Dan: (44:50)

Yes, but I knew going into Diane Court in Cohoes was not going to be my permanent home. I was just here for tempo- for tempularity… I can't say that. (Jill, April and Dan laughing) Temporarily. Temporarily (laughter continues).

Jill: (45:12)

We get it. We get it. That’s a long word.

So, what do you mean that you were only going to be there… we can say for a short time, right? Temporarily, for a short time. What do you mean that you were just going to be there for a short time?

Dan: (45:24)

Because I knew I was going to another group home at Baker Ave.

Jill: (45:34)

Okay, and what did you like living at Diane Court?

Dan: (45:38)

To be honest, no.

Jill: (45:42)

No. Was it hard for you initially to make that move and you didn't totally love it there?

Dan: (45:49)

Yeah, I love being that Baker, but I tolerated being at Diane Court. Cause that was my stepping stone to get into Baker.

Jill: (45:57)

Was part of your reasoning that you were just ready to move out and you were going to go there and just make that work until your next place was ready? Yes. Do you know when you moved into Baker Avenue?

Dan: (46:13)

2004.

Jill: (46:15)

Okay, so yeah, it's been 20 years. 

Let's pick up the conversation with my dad where we left off before. 

Jill: (46:23)

How far away do you live from him? 

Carmen: (46:24)

Two and a half hours.

Jill: (46:25)

Okay, so what is your role now in his life?

Carmen: (46:26)

Well, I tell him there's three rules, happy, healthy and safe. We speak every other day. The other rule is he can come visit me at Big Moose Lake whenever he wants. He comes every two to three weeks and spends a few days and he loves it up here. My friends have become his friends. Yeah, so it's really nice for him to come up and he's not as active as he used to be. So, it's basically watching Netflix or prime video movies and going out to eat.

Jill: (47:04)

And playing some pool, too.

Carmen: (47:06)

Playing pool and then in the summertime he likes to swim. Yeah, so he comes whenever he wants. I just took him back on Tuesday and before he leaves, we look at the calendar and he picks the day he wants to come up. So, his next trip is February 28th.

Jill: (47:23)

Okay. Do you think that he does enjoy having his own space, his own place to live separate? Of course he doesn't live there alone, but do think he likes that separation?

Carmen: (47:33)

He likes it a lot and makes him feel independent. And that's very important to him, to feel like he's someone independent.

Jill: (47:44)

Mm-hmm. I do remember traveling to see him when I was much younger with my dog. And I couldn't have her stay in the hotel, and everyone loved to have her in the group. She insisted on sleeping on the bed, but I think everyone was okay with that, especially Dan, since he was sharing his room with her. 

So, I started, well, April and I started interviewing you to learn more about your story. And Dan was definitely aware that we were interviewing you. I asked him if he also wanted to be interviewed because we were going to be coming to your house for the holidays, April and I and the dogs. And he said he did. And we sat down at the dining room table. And I just asked him about his life. 

And it was very interesting to hear from his perspective, how his life had turned out and he seemed quite content with his life. And I asked him about visiting you and whether he had any, you know, concerns about you after mom passed away. And he did. And then he explained to me when he started feeling less concerned and he knew that you were going to be okay. 

So, I think a misconception might be that he doesn't carry the emotional weight or heaviness of life circumstances, but I think that that's very much not true. Especially talking to him recently about mom's death and what that meant for him and how he saw it affecting everyone else. 

And even when he'll ask me about something that's going on in my life that might not be entirely positive, something that honestly, I would rather probably not speak about. He always surprises me with his response and how compassionate it is. So, he does see and understand what's going on with people. 

And I guess I would like to just make sure that anyone who's listening, who maybe doesn't have experience with individuals who have special needs is not to underestimate these individuals or count them out as very engaging and impactful members of society. 

Like I said before, we're going to be doing an episode with a really wonderful estate planning attorney who focuses on special needs. What kind of planning did you do for Dan? And also, maybe talk about maybe family planning that you might have done to make sure that Dan will be okay.

Carmen: (50:42)

As you know, no one gets out of here alive, and the future of group homes is uncertain. So, we decided to set up a special needs trust for a handsome amount that probably he'll never need as long as the group home stays open.

Jill: (51:00)

Mm-hmm. Have you already funded it or will it be funded at your death?

Carmen: (51:07)

It'll be funded upon my demise through the proceeds of a whole life insurance policy.

Jill: (51:14)

Okay, so you do have a local attorney in New York that you worked with to create that trust and to make sure that it gets properly funded and it's got all the appropriate language and you're comfortable with who you've chosen as trustee. But I'll get into those details when I speak more with the attorney in a future episode. 

I do recall, this was actually at my law school graduation… So, I was 30 years old, and you and Dan had come down for my graduation and we were sitting outside having an early dinner and someone in our family had just had a third child and you had said, “I always tell people, you know, never have more than two. You gotta have one parent for each child.” And I said, “Dad, I'm your third child.” And you looked at Dan and you said, “Well, there's a reason for that.” So, what is the reason for that, dad?

Carmen: (52:20)

Well, I felt, we felt, mom and I, that we had to have a team to help Dan navigate through life when we're not around. So, that was part of it. But we really wanted you (chuckling). But, that was part of my logic anyway, but not entirely.

Jill: (52:43)

Is there anything that you would say to your younger self? Is there anything that you would worry about less, that you would worry about more? Anything you wish you knew?

Carmen: (52:57)

Well, I mean, as a parent, you're always worried. And as a parent of a special needs child, Dan in this case, you know it's not easy having him in a group home. He gets on a bus every day and goes to work. And who knows about the people in the group home that he works with. So, his safety is always a concern. When he and his buddy walk to the local deli to get a sandwich, you worry about the safety there. 

So, I think it's your role as a parent, but especially a parent of a special needs child, that you're constantly worried and you try to set up your child's situation, so you minimize most risks for their safety. But it never goes away. It never goes away.

I mean, I would rather talk to him every day, but he and I decided that's a little too much.

Jill: (53:57)

(Chuckling) Okay, so how often is he willing to speak with you? 

Carmen: (54:00)

Every other day.

Jill: (54:01)

Well, that's not bad. That's not bad. 

I do recall sometime recently that I missed a call from him, and he left me a voicemail and I saw it transcribed. And it was, “Hi Jill, I'm at Starbucks.” And I thought, what are you doing at Starbucks by yourself? Like, I don't even, you don't even drink coffee. I don't know why he would be at a Starbucks. And then I listened to it, and he was on the STAR bus, which is the bus that he takes to get home from work. 

And I think that technology has obviously really helped with his communications because he never learned to read fluidly. And I remember until just recently, until September, I was only ever sending him photos because I didn't think that he could read my messages. And then he was standing next to me, and I heard his phone read someone’s message to him. And I said, “Oh, you can read the messages?” And he said, “Yeah, my phone reads it to me.” 

So now I can text him anything that I would want to text him without worrying that he's going to have to go find somebody to read it to him. So, I think, you know, I couldn't necessarily have imagined in a lot of ways where we'd be today in terms of technology. But the impact that it's had on his life and his ability to stay connected, which is extremely important to him, has been very valuable.

Carmen: (55:37)

Well, the iPhone has made a big difference. And Siri, he asked her for everything. He has really learned to use that iPhone quite well. And how he got that iPhone is a funny story, if you'd like me to share that with you. 

We had a, as you know, we had a live-in nurse when mom was ill, Lika. And Danny continues to stay in touch with her. And her area code is 917 something or other.

And he had one of these old-fashioned phones in his room and he went to call her, and he hit 911 by mistake. So, if you hit 911 from a group home, everybody shows up. Cops, fire department. And he said, “I'm, you know, I was just trying to call Lika”. So, they, you know, they left. I said, I said, “Okay, let's rip out the phone. We're going to go get you an iPhone.” 

And he's really good at it, you know, FaceTime. So now he can see us when he talks, he uses that. You know, he gets his weather from there. He gets his music from there. And now he's learned how to dictate messages and have them read. I haven't really taught him a lot of this stuff. He's picked it up. 

And what's interesting, he has a housemate, Matt, who is just a wonderful young man.

Jill: (56:57)

And Matt has Down syndrome, correct?

Carmen: (56:59)

And Matt has Down syndrome, about the same age, wonderful guy, very close friend. But Matt is highly technical. So, he's very good with the computer and he's a reader. He reads novels. And Dan couldn't read a novel. 

So, it's interesting. Everybody's different and parents of special needs children should understand that. I mean, they're all individuals with their strengths and weaknesses just like everybody else. But the most important thing is behaving, is that they're socially appropriate. I think that's the most important thing.

Jill: (57:37)

Right, because being socially engaged and knowing what behavior is appropriate, that's something that's really important for all kids, right? But I think what you were really alluding to earlier is that there are going to be lots of struggles, right? And so, pick your battles. 

Your kid is going to grow up in a world where it's going to be easier if they can communicate easily, that doesn't mean that they have to do geometry. But it's going to be easier if people enjoy being in their company, because the world can be a lonely, harsh place. And if you are able to interact with other people, you know, that I think is a really important foundational skill. 

And I don't even mean that just for individuals who might struggle otherwise, but you know, teenagers who might be so attached to their phones that they're not learning how to communicate with people in person, you know, just a general, I think, good piece of parenting advice that that you have.

Carmen: (58:46)

Yeah, and I also think mainstreaming your child in the local school helps as well. It helps them develop their interpersonal skills and work on their social behavior. And rather than a school that only focuses on special needs students, they're not going to develop as well in that environment.

Jill: (59:09)

Okay. I guess I want to ask you one more question. The interview that April and I did with Dan, I sent you the audio from it. What did you think of that interview? Did anything surprise you?

Carmen: (59:19)

No, I don't think so. I thought he handled himself very well. And I think he was very proud of himself for doing it. But no, I don't think he said anything that surprised me. Did he say anything that surprised you?

Jill: (59:33)

It surprised me that he didn't think Down syndrome had affected his life. That did surprise me. And I was surprised with how articulate he was in speaking about mom's illness and her death. And I didn't even know if he would be willing to talk about that. I asked him if he was comfortable talking about it. And he said that he was. 

Let's take another moment to step outside the conversation with my dad, and hear what Dan had to say about our mom. 

Jill: (1:00:06)

Do you want to talk about mom at all?

Dan: (1:00:10)

Yeah, I’d love to talk about my mom. Yeah. 

Jill: (1:00:14)

Okay. What was your relationship like with mom?

Dan: (1:00:17)

It was great. It was great. Yeah.

Jill: (1:00:20)

Was she a good mom?

Dan: (1:00:22)

Oh yeah.

Jill: (1:00:23)

What kind of stuff did she do?

Dan: (1:00:25)

You know, because I was in Special Olympics and, you know, she was a big support. And also, dad. A member of the state games.

Jill: (1:00:35)

Did she go to those?

Dan: (1:00:37)

Yep, the one's up in Albany.

Jill: (1:00:42)

And what sport did you do?

Dan: (1:00:44)

Swimming. I did retire doing the swimming.

Jill: (1:00:48)

Did mom help you out with anything that you want to talk about or any special relationship things?

Dan: (1:00:57)

Well, cause my mother was a kindergarten teacher. So, she really helped me with that as well.

Jill: (1:01:06)

With your schoolwork?

Dan: (1:01:07)

Yeah.

Jill: (1:01:08)

What kind of stuff did she do to help you with your schoolwork?

Dan: (1:01:12)

That was like a long time ago, so I really don't remember.

Jill: (1:01:19)

I remember her reading books to you that you had to read in school.

Dan: (1:01:23)

That's correct. Yes.

Jill: (1:01:25)

And explaining them to you. Did she take you to your Special Olympic practices and your meets?

Dan: (1:01:26)

Oh yes

Jill: (1:01:34)

Okay. Do you remember when mom started to not feel so good?

Dan: (1:01:38)

Oh yeah.

Jill: (1:01:41)

What did you notice?

Dan: (1:01:43)

She wasn't really happy. I mean, she wasn't she wasn't herself.

Jill: (1:01:51)

Do you remember her as a happy person before then?

Dan: (1:01:54)

Oh yeah. 

Jill: (1:01:55)

Laughing a lot.

Dan: (1:01:58)

Laughing a lot, being happy a lot. Her laughter was so contagious, which you and I both know. That she had a hearty, hearty laugh. 

Jill: (1:02:11)

Yeah. And so, you first noticed that maybe she wasn't as happy as she used to be. And did you notice anything else?

Dan: (1:02:18)

Her behaviors when she was ill, it wasn't her.

Jill: (1:02:29)

What do mean?

Dan: (1:02:33)

I guess she was just not herself. And we both, we all missed it. And that's really it. I can't really describe. 

Jill: (1:02:46)

It was just different.

Dan: (1:02:47)

Yeah, it was just different.

Jill: (1:02:51)

And did dad talk to you about what was going on with her health?

Dan: (1:02:55)

Yes. Losing a parent is difficult, which you and I both know. There was no cure. There was no, there was no medication. And that's really it.

Jill: (1:03:16)

And do you think that dad has been a really, has he been very supportive?

Dan: (1:03:22)

He always has been.

Jill: (1:03:23)

He always has been. And do you think you're closer to dad now?

Dan: (1:03:27)

Yeah. I always have been.

Jill:(1:03:31)

You were always close to dad. 

And now back to the conversation with my dad, in which I'm commenting on whether I was surprised by anything in my interview with Dan. 

Jill: (1:03:43)

I guess nothing too surprising, but what it's like with any person you interview, you are going to learn things even if you… like I grew up with Dan, but I still learned a lot about him from that interview.

Carmen: (1:03:56)

Yeah, he gets, as you know, he lost his best friend, Chris. One of his housemates in the group home.

Jill: (1:04:03)

And Chris also had Down syndrome, and he was about Dan's age, right? He passed away a couple of years ago.

Carmen: (1:04:10)

Yes. And that really affected Dan significantly to this day. So now he gets counseling every other week and he loves it. He says it's confidential. I can say whatever I want. Every other Thursday he has an hour session, and he says it's really, he looks forward to it and it's been very helpful.

Jill: (1:04:19)

Okay, well, that's good.

Jill: (1:04:40)

I do remember, I was actually with him at the doctor's appointment with his manager when he was asking about getting some assistance with his mental health and starting therapy. But one thing I would say too, that doctor's appointment that I went to with him, his house's manager came with him, and I was really just tagging along. And I was very impressed by her and how she handled herself. 

During the drive over, she talked to Dan about what they were going to talk about at the doctor's office to make sure that she understood what his concerns were, and that he understood what her concerns were. And when we walked into the doctor's office, she did not walk up to the receptionist. She had Dan walk up and check himself in and explain who he was.

I was grateful that I was able to see that because I really appreciated how she made him stand on his own. She stepped in where she needed to, but she let him lead the discussions. And so that was just really, really nice to see. You know, and I think that's a lot of why he feels he is independent, because he does have to do a lot of things that might be uncomfortable. Like it is uncomfortable to talk to your doctor about concerns you have, but he's doing that.

Carmen: (1:06:06)

Yep.

Jill:(1:06:07)

So, before we sign off, are there any kind of parting words you want to leave us with?

Carmen: (1:06:12)

No. I think we covered pretty much everything.

Jill: (1:06:16)

I think we did. Well, thank you very much for your time today, dad. I think it's some really valuable insights.

Carmen: (1:06:25)

Okay, you have a good day and enjoy your trip to Niagara Falls.

Jill: (1:06:30)

All right, thank you. Bye.

Carmen: (1:06:31)

Bye bye

Jill: (01:06:32)

I’d like to thank my brother, Dan, for allowing me to share his story on this podcast, and, generally, for being a totally awesome big brother.

I’d like to thank my dad again for being so open and honest in sharing his experiences. It’s not easy to reflect on the challenges and big decisions that have shaped our lives and our families, and I appreciate his willingness to have this conversation with us.

If today’s discussion resonated with you, or if you have a loved one with special needs, I hope this episode provided some insight, encouragement, or just a sense of connection.

In Episode 9, I’ll be speaking with Kristen Lewis, an incredible special needs estate planning attorney out of Atlanta, GA. She has a wealth of knowledge to share about how families can plan for their loved ones’ futures with confidence and care. I hope you can join us.

Thanks for listening, and I’ll see you next time.

Before we wrap up, I want to remind you that while I am an attorney, I'm not your attorney. The Death Readiness Podcast is for educational purposes only and should not be considered legal advice. Use of this information without careful analysis and review by your attorney, CPA, and/or financial advisor may cause serious adverse consequences. I provide no warranty or representation concerning the appropriateness or legal sufficiency of this information as to any individual's tax and related planning. For legal guidance tailored to your unique situation, consult with a licensed attorney in your state. To learn more about the services I offer, you can visit Oversimplyllc.com.

April: (1:08:26)

Hi, I'm April, Jill's daughter. Thanks for listening to The Death Readiness Podcast. My mom always says that death readiness isn't just about planning. It's about the people you leave behind and the legacy you create for them. We hope today's episode helps you think about how to take care of yourself and your loved ones, now and in the future. If you liked what you heard today, share this episode with someone you care about. Follow our show for free on Apple Podcasts, Spotify, YouTube, or wherever you're listening right now.