Featuring Panelists: Dana Hooper, Lee Nelson, Fran Goodwin, Tracy & David Hovda

Table of Contents

1. When is the ‘right time’ or is there a ‘right time’ for your loved one to transition into housing?
2. How can parents with a younger child facilitate a smooth transition while letting go and fostering independence?
3. How did you juggle day-to-day life and getting your loved one ready on top of managing the needs of your neurotypical children?
4. What are some of the fears, you perceive, that are different for parents transitioning their daughters into a home? 
5. Do we need to get SARC approval to get your services and if we use Options for All, would this be an overlap, in which case, we’d need to cancel their services and start with LSA services if we so choose?
6. If the child has no decision making capability about their living arrangement, how do parents deal with transition and post transition? How would parents ensure their loved one is taken care of long-term? It may be a great placement to begin with but to your point Monday, nothing lasts forever. 
7. For those who have their child living at home, I’m curious how you are able to take trips, etc, without your child. I know we can get respite help, but how about for overnights, perhaps for a week or two?
8. Transitioning from Home into Community Housing Video

When is the ‘right time’ or is there a ‘right time’ for your loved one to transition into housing?

Lee: My wife and I started talking about our son and his long-term home a long time ago. I think the right time to start discussing it is early on. Partially because the right time to transition into a home is when you’re ready. I think that means emotionally ready but also ready in terms of just some of the basics. At least for our Luke, we think about things like how socialization skills are but also teaching him how to deal with the unknown. Luke’s sister has been away at university for several years now so he’s just got us. We try to make sure he’s got the right boundaries and that he understands boundaries. We take these things, socialization skills, dealing with the unknown, and understanding boundaries. We want the right time to be when we think he’ll be successful at it. This is something that we talk a lot about. That’s sort of our discussion plan, often over a glass of wine when Luke’s sleeping. I’m trying to plan out exactly when we think the right time is. I have to tell you, on the parent’s side of this too, we have to feel like we’re ready to let him go live somewhere else. For 24 years he’s been our baby, for lack of a better word. The idea that he’s going to go live somewhere else and not be with us is, I won’t get to dry him off after his bath every single night just seems odd and maybe a little lonely. But I think we’re ready and we’re just trying to make sure he gets ready. 

Tracy: As far as what Lee’s saying. Is somebody else going to know that when Scotty gets out of the shower this is kind of how we do it. We’ve got a procedure that we do. It’s not a ‘procedure’ in a negative way but we do this, then we do this, then we scrub this, then you get out, then let’s clean your ears first. We shave Scotty, he doesn’t shave himself. Is somebody else going to be able to figure these things out or do we have somebody stand there with us while Scotty’s in the shower and see how we’re doing it. Other people have ideas, I’m sure all the folks from LSA who have spent time with kids like ours for a very long time so they probably have other ways that they’re doing things. Just because David and I do it a certain way doesn’t mean… you know, it’s been 29 years of us doing things our way but it doesn’t mean that somebody else won’t have an even better way. That would be fun to see. Somebody else comes in and goes ‘oh well we have a fine time when we’re doing this, I don’t know what your problem is and why you’ve been having all these troubles all this time’. But our Scotty is 29 so we’ve been working on things for 29 years. So I think Scotty is going to take a little longer to be ready than we are even though we’ve just said that because he is our little boy. 

Scotty: vocalizing

Dave: Speaking of which. 

Tracy: He’s sticking his head in the door. He was banging on the door before so we thought we would just leave the door unlocked and he could participate if he wants. 

Hadiyah: He’s a part of this conversation too. 

Tracy: Once we know, when we know, if we know that there’s going to be a place for Scotty for housing, then we’ll do a lot of talking. I’m here to learn for myself. We don’t know what’s going on either, we’re here to learn from the other panelists as well because they’ve done this for longer. We will be talking to Scotty a lot more. We’ll be showing Scotty pictures of the new house a lot more. We’ll be driving by a lot. We’ll be making a whole bunch of little visits. I am assuming that this is how you transition a child like ours, who’s 29 but really a 3 year old in his head. But luckily we have people here who can give us that advice too. 

Dave: I think in our case, Scotty has certain challenges but we love having him live here. I think as we’ve gotten a little bit older, I think our focus has turned more to what’s in his best interest as opposed to what we like to do on a daily basis. We’ve started exploring more because we think it’s very much in Scotty’s best interest to find a great long-term, lifetime home. 

Fran: To the original question, we were talking about this earlier and I think Dana had the perfect answer that there is no right time. It’s when it’s right for your individual, your loved one and you as a family. I say you as a family because, for us, if we hadn’t been ready, it would’ve been even harder to transition Scotty. You have to kind of lead the process with them. I had this fixed idea in my head when my youngest son was going to go off to college and then graduate college early twenties, that would be the time to transition. I set that goal for Scotty, early twenties. I mean it was just a date, it wasn’t like I knew something. I just had to pick something. That was for us so Mark and I could kind of plan around what came after. So we just picked a date. But we weren’t fixed on it. It was somewhere in the early twenties. That was a goal to move towards. Then I started sending Scotty more and more to away camp with the idea that he was kind of getting used to spending the night in a different community setting and away from home. And there would be somebody else doing those intimate care things like Tracy, David, and Lee were talking about, the things that we do as caretakers. I don’t think there was ever a right time for me. I miss him. He’s doing amazingly well. To the point you made earlier, becoming an independent person gives him the opportunity to do things he wouldn’t do if he were with me. That is actually happening. So yay! He went on a boat trip last week. He went on the Monterey Bay with a group of people, I wasn’t there. We didn’t even know if we needed to give him sea sickness tablets because he’s never been on a boat. He did amazingly well and I can tell he’s really proud of himself. He’s doing more and more of those kinds of things so I know it’s been the right decision for him. And it’s the right decision for us as a family but I do still miss him. Both of us still feel this tug, ‘is he okay today?’ ‘ what’s happening?’. We’ve got Dana on the panel and we’ve got me. Scotty has only been transitioning for the last three years. Dana did this a long time ago. So I don’t know if that feeling goes away, Dana. That slight panic but I know it gets easier. The more he does and I can see how he’s growing and he’s happy, the less of those panicky, anxiety feelings I’m getting. So I want to encourage people to work through it and keep moving even though it’s kind of scary because just now it’s starting to get easier. Tell me it gets easier Dana. 

Dana: For me, as Fran pointed out, it was a long time ago. So Brent has been living in his home, in the community, for 25 years now. I grew up in a family where you graduated from highschool, you went to college, then you never came back. So Brent grew up and graduated from special ed, or as I used to say “timed out”. When he turned 21 it just seemed logical to explore what would be next for him. Fortunately, I mean the system has gotten a lot better since then, but fortunately for him, he had a special ed teacher, Holly Wade, who voiced to the parents of students in his class, “hey, it’s time to start thinking this through”, “hey, there’s options”, “hey, what can I do to help you along in that process”. So I had no idea if it was the right time, it just seemed like a logical time to start. So I just started looking at options. It’s sort of ironic that I’m the Executive Director of a “group home” organization but the first thing I did was look at a couple of group homes and I went “oh my god, this is not the right place for Brent”. Then I was like “what else?”. So I just started looking at options and I was so fortunate because my mom wanted to help her grandkids go to college and in the case of her grandson who couldn’t go to college, she wanted to help find a house. She helped us find a house and Holly Wade got us talking to a supported living agency and it just kind of came together. So we didn’t know when the right time to transition was but thank god we started when we did. 

The final part of that is you do have to think out a transition plan. For some it might be pretty simple and for others it might be a bit more complex but it has to be based on your needs as parents and your loved ones needs. In my case, Brent moved into his new house, was coming home every weekend. A couple weeks later he comes home, we have our favorite pizza, a routine since he can remember. After pizza he says “home”. I go “what do you mean Brent”? He goes “home”. It was very clear that he wanted to go back to his house, which was his home and he was happy to visit us for dinner. I knew right then that he had made the transition. It was nothing that I can think of that I did or didn’t do that enabled that. 

Hadiyah: What I’m hearing echoed is that there is no ‘right time’ but also the process for everyone is different. Why don’t you talk a little bit more, Dana, about the process that you see with other families. Because I know a lot of us are in the midst of the process right now. 

Dana: I see variations of the process. It involves getting started early and starting to learn about what the options are with an eye towards what would fit for your loved one. I also see that process taking some time because the parents have to really get comfortable and start to let go. I see some parents let go easier than others. It all comes back to having the confidence and the comfort that someone else can do just as good of a job as you, and in fact might even allow your loved one to learn more independence and be more socially involved than they could’ve been at home. But you have to explore, so what does that exploring look like? Well SARC’s a great resource, your service coordinator. There’s a lot of resources out there, organizations like, Housing Choices or Parents Helping Parents. Providers like LSA that’s quite happy to tell you about what residential care looks like or a supported living vendor. Finding those resources, getting on people’s mailing list, getting out and seeing stuff. Ultimately you’re going down a journey that says I need to understand all the options, I need to find one that’s right for my son or daughter, and I need to figure out when and how to pull the trigger. From an LSA standpoint, slow, steady, and individualized. That means starting with what Dave said, looking at pictures, visiting what might be his future home to have dinner and meet people, see what his room looks like. All those kinds of things could enable both parents and the individual to be in a transition without necessarily prescribing exact dates and exact activities because the plan needs to be built by those involved. The process starts early, involves using a lot of resources, and over time it kind of narrows down where you want the ship to land. Ideally it happens in a timeframe that allows it to happen normally and naturally. Probably the worst case scenario, I see it happen once in a while, dad’s gone, mom’s now 83, son, living at home, is now 64 and all of a sudden you have to find a place for the son. Because mom needs to go into assisted living. So sooner is better than later. 

How can parents with a younger child facilitate a smooth transition while letting go and fostering independence?

Lee: We are in the information collection stage. We’re talking to everybody we can, attending events, asking a lot of questions. Even Fran was nice enough to show us where Scotty lives and even bought us lunch! I learned a lot about that wonderful farm that he lives on and his life. It looks wonderful, by the way Fran, as you know. Through friends and a network, we’ve learned a lot. My son is somewhere on the autistic spectrum so we go to the annual event that the San Francisco Autism Society holds at Stanford University because there are literally hundreds of people there and a lot of providers as well, including LSA. It’s an opportunity to rub shoulders with people that have the exact same concerns that we do. I usually come home with a list of websites, numbers to call, or newsletters to sign up for. My Gmail is packed with those sorts of things and I read them to pull out the nuggets of information that seem relevant for someone young like Luke, who just aged out of the school program 2 years ago. We feel like he’s probably getting to that age where he will grow more independent without us than with us. So we are really at the information collection stage, trying to see the options. We visited some places, and we talked to our service provider at SARC who has some information. Our service provider is really good at getting things done but maybe not a creative thinker when it comes to the possibilities out there. We’re trying to learn from everybody we can. If I wasn’t a panelist on this panel, I probably would’ve signed up for it, just like all of you out there, to learn what I can. 

Hadiyah: Speaking of the San Francisco Autism Society Conference, Jill Escher is actually in the audience right now. Hi Jill! Thanks so much for mentioning that, for that plug, because it is a great resource. We go to that conference every year and we try to make sure that we have a presence there in a way that’s meaningful for just that reason. 

Fran, I know we get a free lunch with you if we come check out where Scotty lives. What about you, Dave and Tracy, talk to us a little bit about how you’re trying to foster and take these steps toward his independence so that there’s a smooth transition when that time comes?

Dave: That’s a great question. We’ve been fortunate to know Fran for many years and she’s a real dynamo and we’ve learned a lot from her. So we have benefited from all the work that Fran’s done and we’ve chatted with Lee as well. I think that we learn a lot from each other. 

I’d say we’re taking baby steps as far as trying to prepare Scotty. What we’re realizing is that when you’re ready, you’re a little bit behind the 8 ball because it’s a process and it kind of takes a while. If I could talk to myself 10 years ago, I think I would’ve been a little bit more proactive in learning more. We were really focused on Scotty’s day program and Morgan Autism Center and so forth. 

Tracy: …and his behavior.

Dave: Right, so just focusing more on the day-to-day. And maybe not quite fully appreciating the amount of research it takes on the part of parents and the time it takes to find the right opportunity. I’d say Tracy and I are doing a lot more work trying to look into options and then we’ll, I guess secondarily, try and help Scooter get more prepared for that transition, once we feel that it’s more real and nearer to him. 

Hadiyah: Before we start the Q&A session I want to just address one thing because I think it’s important. You said there’s a lot going on during his school years and you have enough to think about in the day-to-day and I know that’s the case for many parents, that you couldn’t even dream about thinking about the future at that moment.

How did you juggle day-to-day life and getting your loved one ready on top of managing the needs of your neurotypical children?

Fran: That’s a really good question. Dave talked about if you could go back and talk to yourself 10 years ago. I think I would be kinder, to your point, when you’re in the midst of the teenage years and you have any other children involved or aging parents it’s a lot. In my experience, we kind of divided the family into, I was staying at home and I wasn’t working so my job was Scotty and caregiving at home and planning for his future and helping raise his brother. Mark was working all the time and he didn’t have time. I think a lot of parents are in this position where you’re kind of doing a little bit of everything. Give yourself some grace. Do everything that everyone has said. It’s great to go to the Autism Conference even if your child isn’t on the spectrum because it’s a really great resource and Parents Helping Parents. My main resource then, with knowledge were other parents because I was telling Mark what was happening, he wasn’t in play, if you like. The parents that were like a little bit ahead of me or right alongside me. So I kind of buddied up. And it’s weird, we didn’t plan this, but having Tracy on the panel, because I remember looking at the day programs. The same process I went through to find a day program kind of applied the same thing to housing and even prior to that looking for the right school setting for Scotty. He is “nonverbal”, he doesn’t use speech to communicate. So, at that point, I narrowed his opportunities for housing. I thought well he’s going to be in a community care home, like an LSA setting. But how independent can you really become? He needs a 24/7 care team as it is but he’s in supported living, which is the most independent I think Scotty can reach with his restrictions and challenges. So that helped me focus on just two types of housing. I recognize that there are people out there with every kind of kid so I just looked at Scotty and thought, what is the most independent thing we can do? And then friends. I got invited to a group of families who I knew some of them but I didn’t know others but I had a friend who was going. One of these mom’s was Lisa Zoogle. Some people out there might know Lisa, but she kind of led this small group and we plastered the walls of this room at the YMCA with post-it notes of our hopes and dreams for our kids. That was a great start, we kind of just took the breaks off and said “what’s important?”. Birthday parties, still being able to go to his music class, going on camping trips. Everybody just put everything that they wanted out on the walls, then we kind of figured out from that what direction to go in. The intent of that meeting was actually for those parents to come together and start doing something together. What came out of that exercise was about four different ideas, all of which came, in some part, to fruition. One of those is Coastal Haven Families because Heidi Cartan was there. That exercise of meeting with other families, getting support from each other, buddying up. If you’re going to look at housing, go with another parent  if you know another parent. Sometimes that’s hard during a working week but sometimes you can go on the weekends. So I did all of that. But I really appreciated some stand out parents that helped introduce me to other parents and ideas. 

Hadiyah: Thank you so much Fran! It sounds like you’ve been really helpful behind the scenes in a lot of different people’s lives. Fran for President! 

What are some of the fears, you perceive, that are different for parents transitioning their daughters into a home? 

Dana: First of all, I know a lot of parents who have a female daughter. We have three homes where they’re all female, as well as a number of co-ed homes, and some homes that are medical, and by virtue of being medical, are co-ed. The number one fear always is “how is my daughter/loved one going to be safe?”. How’re you going to keep her safe, healthy, make sure she has a good life and grows and all these other things but it starts out with how are you going to keep her safe. It kind of comes back to the fact that we have to keep everybody safe. So that’s the way we built our program. Some of it is the licensing regulations that are specifically directed at an adult residential facility, that has to do with protocols for hiring people, protocols for training, how to provide oversight, and who oversees us. These regulations are built in. By the way, if your daughter lives in an apartment with supported living, a lot of those regulations aren’t built in and it’s one-on-one. If I was a parent, I’d worry most about one-on-one because there’s nobody else around. In an LSA home, typically, there’s a multiple of two people around and they’re both trained to be aware and be mandated reporters. If they see or hear something, they have to step forward and say it and it’ll be looked into. So it’s a valid fear and obviously whatever option you look at, you have to kick the tires. You got to kick them hard. You have to make sure it’s a quality organization, that you look at their track record, you should be there and see what a day in the life would look like. Do the residents have smiles? Do the staff have smiles? Do they seem to enjoy being there? So you have that fear but make sure you kick the tires and there’s really a lot of quality providers out there. 

Hadiyah: Dana, thank you so much for answering that. It’s a valid concern that has to deal with transitioning. I wanted to make sure you guys know that it’s not something we did intentionally but when we were asking around, these are the people that volunteered. That being said, everyone that you see on this particular webinar is a part of LSA’s leadership in some capacity, or has been. They were willing to open up, whether they were in process, whether they had placed their loved one. I will say this, none of the panelists you see here have a child that’s living in an LSA home, as of right now. But they’re vouching for, not just LSA, but also they’re journey. That’s from the boardroom to the most junior person that’s working at LSA. That’s been my experience and that’s been the experience of many people. There’s a spirit of transparency, there’s a spirit of community, and wanting to get it right for everyone’s family and everyone’s household, whether it’s your child or not. 

Do we need to get SARC approval to get your services and if we use Options for All, would this be an overlap, in which case, we’d need to cancel their services and start with LSA services if we so choose?

Dana: I’m somewhat familiar with Options for All but essentially that’s a day program and LSA’s homes are a residential program. In LSA’s homes, it’s expected that individuals go out during the day, just like us real adults go to a job, go to some recreation, go to a day program. So I’m guessing that if someone who lives at an LSA home wanted to be part of Options for All, that would be their day program. We don’t want to dictate what their day program is, it should be what’s best for them. In some homes, we have in-home day programs because there aren’t good options outside. In general, people go off to their day program in the morning and at the end of the day they come home and home is LSA. We do have a day program, it’s called the Community Integration Training Program (CITP). It’s not limited to LSA residents, that’s where my son goes as a day program. That’s the only crossover for my son. 25 years later, I thought to myself, “darn, Brent could have a better day if he looked at the LSA program”. So he started looking at it one day a week, then two days, three days, I think he’s at four now. Everybody said, ‘now he’ll never tolerate a day program, he’s too cantankerous like his dad’. And of course everybody was wrong, he loves it. He loves the social aspect. But Options for All, or any other day program, that’s fine. In supported living, the nights and days kind of all blend in and it can look like one-on-one, 24/7. That doesn’t necessarily give someone a life that they need or want. 

Hadiyah: I think that’s a great segway here. I know that there’s several people who’ve been participating in other day programs and have lived in an LSA home. Particularly, there was someone at some point that was in Options for All and also living in an LSA home. We ended up working with that person while they were at their home because they were in an Options for All filming program so that was a quite cool clash of everything. 

If the child has no decision making capability about their living arrangement, how do parents deal with transition and post transition? How would parents ensure their loved one is taken care of long-term? It may be a great placement to begin with but to your point Monday, nothing lasts forever. 

Dave: Well if all goes well, LSA will last forever. I think there are housing options where they inevitably have an end date. For example, there’s a couple, they have people in their home, then they want to retire, and then the people living there have to move somewhere else. I think LSA and probably similar kinds of organizations, that have a really long-term focus and that are ongoing entities, will provide lifetime care. As opposed to the next 15 years and then you have to find another place. Ideally, that’s the goal. 

Fran: Supported living too. Supported living, in the sense that you can stay in a home of your choice and it’s separate from your care team. So if the care team starts to get wobbly, you can switch out the organization of care and your loved one can still live in the house or the apartment where they are, importantly, with whoever they’re living with. Scotty’s in supported living, for example, but the set up that we have is that he isn’t actually living by himself. He’s living with another person and that person may or may not have disabilities, in his case he does. 

When you’re looking, it’s really hard. I really feel for you when you asked that question about how you’re making this decision for your kid and they’re not helpful in the way that you would hope they had an opinion. But when you go visit places, first off, see how easy it is to get inside. How easy it is to talk to people, talk to residents and staff. The caveat to that is it might be a great organization but they are really respectful of their residents’ privacy and the staff have to do a job. So it’s not like when they won’t let you in if you just drop by. But you should be looking for an organization that’s willing to open its doors, show you around, and answer questions. Start to form a relationship with that organization prior to making the decision to apply for your kid to move in. Get to know them because that organization, that home, is going to become your kids’ family. Does it reflect the values that you and your family have? Will they respect the things that you think your child does now? It’s a starting point. There’s two things I know, I’m not like I was when I was 18 on a good day and I don’t want to live with my mom. I love her, she’s coming to visit and that’s great. Give your kid that opportunity to adult, adulting’s a whole new thing. I’m still learning, we’re all still learning. So nothing;s set in stone. Make your best guess. Kick the tires, like Dana said. And if you’re not still clear in your own head, because it’s an emotional decision and it’s really hard, talk to friends and family. Talk to whoever you get those feelings of support from, a therapist. Maybe you don’t have a therapist and you get a therapist. Find any form of support that helps you make that decision because it isn’t easy. It can feel really lonely. Even after you’ve done it, during the transition, you can still feel it. All those feelings don’t just disappear the day you make the decision, they’re just replaced with new worries. Usually your gut can tell you stuff, I think that’s it. You talk to the people in the organization and if you feel good after you talk to them? Chances are your kids going to feel good. Leadership counts, it really counts. And to Dave’s point, long-term planning: nonprofits are great for that. Because, like LSA, I know from being on the board until recently that there’s a strategic plan that goes beyond. There’s succession planning for the organization, that’s important. Asking the question, like, what’s going to happen if you retire? What’s your plan? Ask the organization those questions. 

Hadiyah: I know we only have a couple more minutes here but this question is specifically to those who have a child living at home. Alice Petersen says, 

For those who have their child living at home, I’m curious how you are able to take trips, etc, without your child. I know we can get respite help, but how about for overnights, perhaps for a week or two?

Hadiyah: Unfortunately she has another meeting but she’s going to come back later and read these answers. 

Lee: That’s a good question because all of us need a break, even overnight. We used to live in England actually and there was a woman that our son would stay with her family and that was wonderful. When we cam back to California, we realized we weren’t going to find that same situation but we were able to have Luke attend a week long camp at Via West, which is in Santa Clara. It’s now been purchased by Ability Path and they have a website, if you’re not familiar with it. There are camps that you can sign your child up for from anywhere from 4-6 days this summer, and SARC will help pay for that. It’s not two weeks, as Alice asked, but it can be for as long as 4-5 nights and that’s better than nothing. Because we don’t have a relative that we can leave Luke with or that we believe is capable at managing Luke, up to our standard anyway. Via West has been our only opportunity to get away for a period of time. 

Dana: Can I just jump in? I wanted to make sure that we’re answering her question. Is she asking about respite services? Or is she asking about a transition? 

Hadiyah: She’s asking about respite services. It sounds like she wants to know specifically from those who are living at home. I know that we are just about at time and there are still several questions that are in the Q&A. That being said, there’s already people who asked for Fran to take them out to lunch. Fran you’re gonna have a long… I’m just kidding. 

Transitioning from Home into Community Housing Video

Learn more about how LSA provides services for individuals with IDD