Geralyn Arango (00:26):
Hello, and welcome to our Parallel Paths, a future for my loved one with a disability and for me. My name is Dr. Geralyn Arango Deeley, Gerry, and I'm your host for this podcast series about just what the title says. The Parallel Paths of family members, certainly parents, sometimes siblings as parents age or pass on, sometimes others, and their loved ones with intellectual disabilities. I'm a parent myself, and I have some questions. On Our Parallel Paths, we talk about creating a promising future for the child with an intellectual disability who's now an adult, and a promising future for ourselves as our role as parent, family member, caregiver, evolves alongside them. There's more than one path, more than one future to talk about, and that's why we're here.

Geralyn Arango (01:21):
Some remarkable people share their stories on Our Parallel Paths, I'm listening with you, and I have some questions for our guests too. I'm honored to introduce today's guest Ruth Landsman. Ruth is the mother of Mitchell, a young man with multiple disabilities. She's a longtime advocate for people with family members with disabilities, and the director of an advocacy organization called Parents Exchange. Ruth is going to share with us today her vision, (and how her vision for Mitchell changed her vision for herself, how it changed her path) as well as her thoughts on what happens if Mitchell outlives her. Thoughts, feelings, and plans - for me, especially because Nick's dad died several years ago, I'm often driven by the question, "what happens to my child when I die?" So welcome, Ruth.

Ruth Landsman (02:18):
Thank you.

Geralyn Arango (02:19):
And tell us what made you choose these topics today?

Ruth Landsman (02:23):
I thought that they were the easiest for me to talk about, and we've done a lot of planning and thinking about how life changed with Mitchell, but the list was interesting, I could have really chosen anything, but these seemed to fit the best.

Geralyn Arango (02:41):
All right. So tell us about your parallel path.

Ruth Landsman (02:45):
Okay. Well, as everyone expects, when they're pregnant, you have the perfect child and family, and life goes on. And when you have a child who is eight weeks premature, and has some other difficulties, you have to make changes, and you have to look at the future differently. We brought Mitchell home from the hospital three weeks after he was born, so he had a relatively short neonatal intensive care unit experience, but it modifies your life, not only your child, but the kids around, and the nurses and the doctors, and the whole medical system that you get involved with. My life plan before Mitchell was to continue teaching, which I was doing before I was married and through my pregnancy, and life would go on. Mitchell would go to daycare when he was a couple months old and life would just continue.

Ruth Landsman (03:47):
He would have a couple brothers and sisters and life would continue. We'd move into a bigger house, maybe in the suburbs because we were living in Philadelphia at the time that he was born, and life would continue. And because of Mitchell's issues, I made a conscious decision that he was going to be it. He is going to be the one and only so that we can really dedicate the time to him that he needs and deserves. We then had to move when he was getting to kindergarten age because we needed the accessibility, not something we considered earlier. We needed to move out of the city because of the special education needs that he had. We needed to be in a school district where he would be of school age, and Mitchell is going to be 40 in December. So we're talking 36 years ago, we would look at a house and then we would check what school district they were in, and then we would find out what their start date was.

Ruth Landsman (05:01):
And it was at the time where districts were moving the age requirement later and later so that the kids are older because they were getting a lot of special ed referrals for kids who were just young and having some problems adjusting. So that was our path, we settled in King of Prussia, a short distance from the intermediate unit where we planned for him to go to school. He had an assessment at the intermediate unit to choose the classroom, and they didn't want me to participate, they just wanted to take him and assess him. And he of course started wailing because as I sit here, the first thing I would've said to them is, "Don't give him anything that makes a loud sudden noise." And what do they give him with poor motor skills? A big multi switch box set up to five different blaring things, and he hits all of them at once with his hand.

Ruth Landsman (06:05):
About 10 minutes later, they invited me into the room and the lead teacher was actually holding him like a baby with his head in the crook of one elbow, and his crotch in the hook of her other elbow, and his legs straight out, and he was sweaty and he was red. And she asked him if he wanted to go to mom, and in mid wail, he said, "Yeah." And I said, "Mitchell knows that I won't take him like that." And he stopped except for the "huh, huh, huh"

Geralyn Arango (06:45):
All worked up.

Ruth Landsman (06:45):
after you've been crying for a while. Okay. And they decided at that point, maybe I could assist them.

Geralyn Arango (06:54):
Why move?

Ruth Landsman (06:55):
Exactly. But Mitchell always kind of surprised people. He figured out ways to do things that he wouldn't be expected to do. I can remember in preschool he was assessed by an OT, and she actually said, "I want to talk to him in a few years so he can explain how he figured out how to do that because he missed all these skills that build up to that." [laughter] Okay? So that was our entry into the system. I was fortunate at the time to meet several other moms of kids who were slightly older, moms, by the way, who I'm still friends with, and their adult children.

Geralyn Arango (07:42):
It's a mom-hood, sisterhood.

Ruth Landsman (07:43):
Absolutely. And they were starting parents exchange, and they were pretty experienced parents already. I was the young novice and they brought me along, and that's where Parents Exchange started. We would assist families calling, we did surveys of available services, community events, things like that that would help families with kids with disabilities. And as Mitchell grew, I started expanding my areas of interest and need, so that when he got into his teens, I really jumped whole hog into transition. Mitchell had come back to our district to be fully included for fifth grade at the age of 11, and the superintendent at that time understood how complicated Mitchell's transition would be, and he said, "Let's start now thinking about this." So he started doing some community-based stuff, and then when it came time really to look for job support, our district contracted with Networks, and a year and a half before Mitchell reached 21, he started working and he was supported by the school aid who was trained by Networks.

Geralyn Arango (09:06):
Okay.

Ruth Landsman (09:08):
So that worked out well. He went through graduation with his class in 2002, and then he continued until his 21st birthday strictly in the community, and then because of some issues we had along the way, he had another year and a half of school services as Compensatory Ed, and it continued in the community. So he's been very much a part of our community, and people know him before they would know us in many cases, and we're part here, but it created rifts in family, extended family, it was too much work to plan for Mitchell to come to a family event, not that they had to do anything other than choose a site that was accessible, but it just created a real rift.

Geralyn Arango (10:07):
I'm sorry.

Ruth Landsman (10:07):
And basically, we chose a house where we would have room to build an apartment for Mitchell, he is using a wheelchair, he needs assistance with all of his activities of daily living. He can tell you basically what he needs, or what he wants? He's great at giving reminders. If you need to do something, tell him, he'll keep you going.

Geralyn Arango (10:32):
I need a Mitchell.

Ruth Landsman (10:35):
Everybody does.

Geralyn Arango (10:35):
Everybody does.

Ruth Landsman (10:37):
Yeah. We had this plan and this vision from an early age, and that led into our planning for the future when either we are unable, or we are not around anymore. Mitchell is living in his apartment with 24/7 staff that I'm the employer for, I have a blank set of applications. I shouldn't say it that way. I have filled out applications for each staff person without my information on it, so that if I die on a Thursday, somebody else can be in place to approve the time sheet.

Geralyn Arango (11:22):
Okay. I see.

Ruth Landsman (11:24):
Okay?

Geralyn Arango (11:24):
All right.

Ruth Landsman (11:25):
And that was exactly how I asked at that time Acumen, the first financial management service that oversees vendor fiscal participant directed services. So my question was, what do I need to do in order for somebody to do the time sheets if I die during the week, during the pay period?

Geralyn Arango (11:49):
Pick up right away. Right?

Ruth Landsman (11:50):
Exactly. So when I have employees fill out an application, I ask them not to put dates on next to their signatures, and not to put my name on it any place. I make a Xerox copy and it goes into the file, and then I fill in my information on the original-

Geralyn Arango (12:12):
All right.

Ruth Landsman (12:12):
... and send it in.

Geralyn Arango (12:14):
So it's two sets, one that's going in now, and one that could go in later?

Ruth Landsman (12:18):
That's correct. We have had very consistent staffing, our two main people have been with us over 15 years.

Geralyn Arango (12:28):
That's fantastic.

Ruth Landsman (12:30):
Yes. So it's a well oiled machine, we've had a couple of thoughts along the way that we decided against, we were going to rent the house out to somebody not connected to Mitchell, and we did things to make the apartment totally separate and then decided somebody really needed to be right there. So the girl who is living in the house because my husband and I have moved to a condo five minutes away, the girl who's living in the house with her three young children and her fiance, I've known since she was very little. Her mom originally was going to be the person, and I've really been grooming her for years, and then when it came time, she wasn't able to make the move. She had some changes in her circumstances, and she suggests her daughter.

Geralyn Arango (13:24):
But you really did have somebody that you thought of years back to be the next person?

Ruth Landsman (13:32):
Absolutely, her son went to Camp Hill, and I made a date with her to go out for lunch because I wanted to ask her if she would be willing to do this and it's a big ask.

Geralyn Arango (13:44):
It's a big ask. Yes.

Ruth Landsman (13:47):
And she immediately said, "Yes." Now, she had a disabled son who has passed away, but she has five other children who are now adults, the youngest is going to be 19 this month. And I wanted her to talk to the kids and really think about it because it was a big ask, and she said, "I've been trying to figure out how to ask you if I can do this for you."

Geralyn Arango (14:17):
Wow.

Ruth Landsman (14:18):
Okay. This is a mom who I helped over the years, and we became friends, and I thought of her to do this.

Geralyn Arango (14:27):
And she was thinking of you?

Ruth Landsman (14:29):
Yeah. She knows the system, she knows the ins and outs. I've kept her informed with what we're doing, I've helped her with what she was doing with her son, all that, and so we were set and then when the time came, she couldn't do it, but she suggested her daughter. So her daughter is participating in ISP meetings. I'm keeping her up to date on new allergies, or preferences or things like that, and little by little turning things over to her to do, to try.

Geralyn Arango (15:04):
So you're doing this while you're still well enough to do this while the emergency hasn't happened. So you're simply working through it, acknowledging the possibilities?

Ruth Landsman (15:17):
That's right. And it's a lot to learn. I have a letter of intent that I thought would be four pages maybe, I think it's up to 19 pages already because you don't realize what you're doing when you're just doing it naturally. Other people need to know that these things need to be done, and how they need to be done.

Geralyn Arango (15:38):
All right. So yeah. So truly drilling down to the nitty gritty things that you don't even realize that you just do just automatically are things people need to be told, and you can do that now.

Ruth Landsman (15:53):
That's right.

Geralyn Arango (15:53):
Wow.

Ruth Landsman (15:54):
And if something happens to me, if I have an illness or a stroke or something, I might still be here, but unable to do this piece. So I'm doing it now. We made the choice to move at this point and switch over to the other person, we're still involved with Mitchell, but so is she, and she's learning bit by bit, the only problem really is that her three little kids have two speeds - run and jump, and the part of the house is over Mitchell's apartment.

Geralyn Arango (16:34):
He's not used to run and jump. Does he?

Ruth Landsman (16:36):
He had to get used to much more noise than David and I were making, living in the house. But it's been a good move for us, and he has adjusted well. So we do some stuff, we're still doing medical appointments, we're still driving him to work, most days, I'm still finding the community activities for him to do. But as I do that, I'm sharing that information with Francis who is the young lady and the nicer thing, her mom is 25 years older than she is, she's actually younger than Mitchell, so she might be the person for him, for the rest of his life. And we live in a good school district, so it got her kids into a good school district, which was a plus for her.

Geralyn Arango (17:35):
Yeah. It's a win-win then that way, she got something-

Ruth Landsman (17:38):
It's a very large task. Yes. So it has worked out well. We are still involved with Mitchell, we also have a trustee for his special needs trust.

Geralyn Arango (17:51):
I was going to ask you about that. How financially, there's so much to do on that end as well.

Ruth Landsman (17:57):
Yeah. We have all of our retirement accounts and savings accounts and whatever we've purchased annuities, everything is to go to the Mitchell Landsman Special Needs Trust. And we have a private trustee who happens to be an accountant, so he can handle tax end of it. He happens to be the sibling of a young adult with disability, so he knows the ins and outs. And we've put some clear direction in our wills, and we've met with him to talk about the kinds of things that the trust would cover, and who his contact person was to tell him that they needed money for X. Okay. Because with staff, you just need to make sure there's one single person instead of them deciding on their own that Mitchell needs this or that. But the apartment was actually built in 1995, Mitchell graduated or went through graduation in 2002, and moved into the apartment actually before he went through graduation because he had a new wheelchair that wouldn't make the turn into his bedroom upstairs. The apartment was built for him.

Geralyn Arango (19:23):
All right.

Ruth Landsman (19:23):
We put in an elevator from our living level, I should say we were in a ranch house that was flat into the living area from the front of the house and flat into the lower level from the back of the house, so we have a driveway that goes a quite an angle, but we built the apartment onto the back of the house on the lower level. So as you're building, it is actually very minimal to put in an elevator shaft and an elevator, and because it was just one floor and it was in a home, we could actually use one of those free standing lifts that you might see outside for a porch. We didn't need like the whole elevator with cables kind of thing, like you would find an office building or an apartment building, and it added probably less than $10,000 cost to the addition that we put on-

Geralyn Arango (20:22):
Not too bad.

Ruth Landsman (20:22):
... And I'm one of these goofy people, I like to have furniture and a wheelchair in the same room at the same time.

Geralyn Arango (20:28):
Good idea.

Ruth Landsman (20:30):
So Mitchell's apartment is set up for him, we didn't know exactly where we were heading, so all of the light switches are those big toggle switches, and they're set a little lower. The outlets are set a little higher in case... So that he could be as independent as possible. Wherever he has two ways in and out of an area, there are light switches at both ends. So you never have to go any place in the dark.

Geralyn Arango (21:02):
So Ruth, it sounds like you were ahead of almost everything along the way. Are there things that you wish you'd known before you started any phase of your plan for Mitchell?

Ruth Landsman (21:17):
About the only thing that I might have changed - we built a two bedroom apartment because there wasn't a requirement for overnight awake staff at the time we did it, and we were figuring a second bedroom for staff, somebody would live with Mitchell, which is much more natural than eight hour shifts coming in and out. So it is possibly the only thing we would've just made one bigger room for Mitchell if we had that requirement at the time that we built, we actually put a door in what was going to be his bedroom, at the back of the apartment a week before the fire occurred at KenCrest down in Chester County, where three individuals and a staff person perished because they couldn't get out from the back of the house when there was a fire. I had the builder make that modification a week before that fire, and the apartment was only framed at that point. So we changed one of the windows into a door in what was going to be his bedroom, so that if there is a problem, it's literally scoop and go right out the door.

Geralyn Arango (22:35):
All right. That's a good plan.

Ruth Landsman (22:37):
Yep. We tried to think of everything. As I said, I add to the letter of intent as I do something that's just done occasionally, Mitchell has a lift van or a wheelchair van, and that needs to be replaced every six, seven years to avoid having lots of mechanical problems with it, so the special needs trust would cover that. If he needs the carpeting to be redone in the apartment, the special needs trust, take care of that. If the kitchen needs to be redone, major appliances, things of that sort, the special needs trust would do that, but he earns about $10,000 a year, plus he has his social security, which will go up when one or the other of us dies, and he won't need day to day expenses covered at all as far as we can tell, he could handle like a new TV every once in a while, pots and pans, or-

Geralyn Arango (23:40):
Not big one.

Ruth Landsman (23:41):
A new wardrobe for a new season, that kind of stuff.

Geralyn Arango (23:44):
Okay. Well now, with all of this Ruth, what brings you strength? How do you take care of you?

Ruth Landsman (23:53):
Over the years as I've worked with families, I was fortified by the successes that we were able to create. That's what really kept me going, it kept me in good shape mentally and physically, I have some health problems, I need to be careful, the best thing I did probably about eight years ago was learn to say no at times. That was a tough step for me.

Geralyn Arango (24:23):
I hear you on that one.

Ruth Landsman (24:27):
And I take on a good bit and I just take it as it rolls. My mom was really a good role model for me, I was quite ill as a child, and I was fortunate that nobody ever said to me. My parents, the doctors, nobody said, "You can't do this." The deal was always, "You can try, but if you get tired or you have trouble breathing, you need to stop right away." And I raised Mitchell the same way, he did stuff that he shouldn't have been able to do and lacked a number of skills. The hardest part for me is really dealing with the missed milestones, and the last hurdle was when my friends started to become grandparents, and I knew that that was never going to be for me.

Geralyn Arango (25:26):
That's a tough one, it's something that you watch other people do.

Ruth Landsman (25:31):
But I live vicariously through some of my friends with their grandchildren and that's-

Geralyn Arango (25:39):
Be a extra grandma.

Ruth Landsman (25:42):
Yep.

Geralyn Arango (25:43):
Okay. And the move, how has the move been? You have left the house. That's a biggie! You're not in the house with the apartment on the back anymore.

Ruth Landsman (25:56):
Right. We're very close by, we're literally five minutes away, and one of the things actually that helped Mitchell adjust was that when David was taking him to work, he was passing here, and he kept saying, "This is where we're moving." So he could see how close we would be. I was concerned about it. I hadn't lived in an apartment in 40 years and I hadn't been in a high rise, probably close to 50 years.

Geralyn Arango (26:25):
It's a change for you.

Ruth Landsman (26:28):
So, yes. And the way the house and the parking was set up, I was literally like five steps out the door and I was at the car. When it's really, really hot and humid out, I could literally hold my breath to get to the car to have the air conditioning on, if I needed to. No such accommodation here. But I found ways around that. They have shopping carts right inside the door that we come in, we got to reserve a parking space that's not too far and it's flat, so they've been accommodating to us and I'm getting some exercise walking up and down the hallway.

Geralyn Arango (27:11):
Well, there you go.

Ruth Landsman (27:12):
To get the elevator.

Geralyn Arango (27:14):
Okay. Well, we'll take that.

Ruth Landsman (27:16):
Always [inaudible 00:27:17].

Geralyn Arango (27:19):
So as we're closing, are there any resources that you'd recommend to the folks who are listening today, as along this path, things that you'd say, "Hey, check this out. It might help you."

Ruth Landsman (27:32):
The one piece of advice is really not to be afraid to ask for help as you're doing the planning too, because there are people who might be willing and interested in assisting you. And if you don't ask, you miss that opportunity, many folks with multiple kids expect the siblings will take over. And sometimes that works and sometimes it doesn't, sometimes they're interested, and sometimes they're not, not that they don't love their brother or sister, but they have their own lives.

Geralyn Arango (28:09):
Yeah. I love your story that your friend was thinking the same things you were thinking as being part of Mitchell's future when you are no longer here, and what a beautiful gesture that is and the fact that sometimes yeah, you go outside of the norm and it's a surprise on the other end.

Ruth Landsman (28:30):
Right. And then, thinking about the things that have to be done, like the blank applications, or the filled out applications without an employer information.

Geralyn Arango (28:40):
I'm going to steal that idea, I love that idea because it just says-

Ruth Landsman (28:45):
Steal it.

Geralyn Arango (28:45):
... You don't have to... Thank you. Thank you for that. Yeah. It's a really nice way to try to make it as seamless as possible if this happens.

Ruth Landsman (28:55):
Right. The thing is in the vendor fiscal model, I'm the common law employer, so all of the staff have to become employed by the new person in order for things to work.

Geralyn Arango (29:09):
There's a lot of applications in common law employer world. So whatever-

Ruth Landsman (29:13):
That's right.

Geralyn Arango (29:13):
... streamlines that is, is helpful. That's great.

Ruth Landsman (29:16):
That's right.

Geralyn Arango (29:17):
Is there anything else you'd like to share?

Ruth Landsman (29:19):
I hope people have learned from our story and are encouraged to think about these things, it's a hard subject to think about, but it's ever so important because all the work that you've put in to raising your family could go down the drain if this piece isn't in place. I lost a friend almost two years ago who just didn't wake up one morning and her non-disabled daughter had no idea what was involved in her sister's care, and ended up having to take on everything at once, although there were a number of us experienced parents who were also advocates around her, it was a lot for her to take in, and she herself said, "I wish I would've talked to my mom about this stuff over the years, instead of just getting thrown into the deep end."

Geralyn Arango (30:19):
Okay. And so it is on us as parents to be able to have that difficult conversation with our children, just to let them know that this is what it goes on even if they don't choose to take our place, they need to understand as family, and what they do with it they do with it, but they need to know, I think sometimes even for my own daughter, I think I'll tell you later, you've got your own stuff. And it's like, "Well, how can I gently give her a little info here and there?" Or "I've started a Google Sheet that I'm sharing with people with all the information I can think of, and I just keep sharing it with my husband, with my daughter, with my sister." And so it's my little inroad to that, to just saying, "You know what? I probably won't be here forever, I probably will not be here as long as you daughter, and so let me start inching it out to you." It's hard. It's very hard.

Ruth Landsman (31:27):
It is.

Geralyn Arango (31:28):
But it needs to be done.

Ruth Landsman (31:31):
That's right.

Geralyn Arango (31:32):
Yeah.

Ruth Landsman (31:32):
And I was quite ill as a child. The latest prognosis was that I wouldn't make it to my 18th birthday. I just celebrated my 70th birthday.

Geralyn Arango (31:47):
Happy birthday.

Ruth Landsman (31:48):
Thank you. So, talking about death is not as difficult for me as it may be for some people, not that I was looking forward to it, but the acknowledgement that people died and something needs to be done, and people need to know stuff is the key. So if you just take it to that simplest point to start to think about the people around you, it may be your kids, it may be a niece and nephew, it may be a cousin and it may be... It needs to be somebody younger than you certainly, but you have to start thinking about it because you never know.

Geralyn Arango (32:32):
Because you never know. Well, Ruth, thank you so much for taking time to share your story, and listeners, thank you for joining me on Our Parallel Paths today. I hope you'll like and subscribe to our podcast, and I really hope you'll return to listen and learn from more stories of people like you and me, and our loved one with a disability on Our Parallel Paths, so we'll see you next time.