What We Wish We Knew — A Family’s Special Needs Planning Journey

Remarkable Futures is a podcast for families navigating the financial, emotional, and practical realities of planning for a loved one with special needs.
Hosted by Stephen Norton of Able Planning, the show brings real conversations to the forefront—about long-term care, independence, advocacy, and peace of mind.
In this first episode, Stephen is joined by Helen Bosch and Marty Schwartz, parents who share their personal journey navigating life and planning for a loved one with special needs. They speak candidly about the questions they didn’t know to ask, the challenges they faced along the way, and the lessons they wish they had learned sooner.
Their story reflects what so many families experience—uncertainty, resilience, and the deep responsibility of wanting to do the right thing for someone you love.
This episode sets the foundation for the Remark(able) Futures podcast. It’s not about products or quick answers. It’s about listening, learning, and planning with intention.
If you’re a parent, caregiver, or professional supporting individuals with disabilities, this podcast is here to inform, encourage, and remind you: you are not alone—and your story matters.

About Remarkable Futures
The Remarkable Futures Podcast is designed to help families make informed decisions about special needs planning, financial security, and long-term care.

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Transcript

Episode 1: What We Wish We Knew — A Family’s Special Needs Planning Journey

Wed, Jan 21, 2026 2:01PM • 47:11

SUMMARY KEYWORDS

Disability planning, special needs, program evaluation, accreditation, advocacy, funding challenges, interdisciplinary team, transition services, parental support, vocational training, community inclusion, emotional support, professional guidance, family advocacy, service quality.

SPEAKERS

Speaker 3, Speaker 1, Speaker 2, Speaker 4

Speaker 1  00:08

This is remarkable futures conversations for families, navigating disability and long term planning. We're here to talk honestly about the questions, decisions and futures families face every day.

Speaker 2  00:25

Hi. Welcome to remarkable futures. You're experiencing our first podcast today. What we're trying to accomplish for families is providing them resources and information that will help them to make decisions and find the appropriate paths for their loved ones as they assist them in navigating issues related to special needs. Today, we're very fortunate to have with us Helen Bosch, who's the former CEO of VISTA life innovations, and Marty Schwartz, the former CEO of the Kennedy Center. He is retired, and Helen is retired, and they're off doing fun things and going to exotic places, so I'm a little jealous of that, but very much looking forward to our conversation today.

Speaker 1  01:14

Chapter One, valuable insights. How do I find the right programs and facilities for my loved one with special needs again.

Speaker 2  01:23

Welcome to our first podcast. Very honored to have you both here. You both have had a meaningful impact on my family's life with our son with special needs, and I'm very excited to learn more in a more formal setting about your experiences. Can you each share a little bit about your careers, what led you to serve this particular population, and just what got you to where you are today?

01:55

Me first Sure.

Speaker 3  01:59

Well, as you mentioned, I'm recently retired. I was 34 years as the CEO of VISTA life innovations, which supports adults with disabilities. And, you know, I don't know that I could say that I knew as a young adult that that was going to be the path that I took. But in meeting and in in in in developing my career, in meeting young adults with disabilities and realizing the needs that they had and what the kind of possibilities were out there, I felt compelled to really be able to to do something in this field. And you know, I could say that every single day that I worked, I learned more from the individuals I worked from then I gave to them. I always felt really, really fortunate with that. And I will just say one other quick thing, which is just that I also am a parent of a of a young adult with disabilities as well. Jordan has cerebral palsy. And so I have not only professionally, been on this journey, but also now as a as a parent, been on this journey too.

03:08

Thank you. Mine was a very circuitous route.

Speaker 4  03:13

I had gone to college, originally seeking a degree in chemistry, and I was, quite honestly, I was concerned that everyone else in the dorm was getting back much earlier than I was, and I was at labs until like 910, o'clock at night, and was often very hungry. So I decided, after a year, year and a half, that wasn't for me, I went into accounting, and actually my roommate, sophomore year, had started volunteering for an organization like on Syracuse University. At Syracuse was the arc at that point. It stood for the Association for targeted citizens, on a term that we use anymore, but he would come back and tell me about his experiences there, and it was not on my radar at all, quite honestly, at that time, and it just really intrigued me. So I started volunteering there and decided this is something that I want to do. Called my folks said, you know, really want to change majors again. They said, why don't you come home? I said, No, I don't want to do that. This is really what I want to do, and the rest is basically history went on. Got a master's degree, rehab counseling, started on my doctorate in Florida, ended up getting married, came back here, began work, continued to take coursework, and ultimately got an honorary doctorate. So as my son has often said, he took the easy way out. But no, it's a very circuitous route, but it's one that I can't imagine working in a field that I would have felt better about.

Speaker 2  04:44

I know from watching you at the Kennedy Center, I always and just to frame it for those listening, the Kennedy Center had a large population of people that they served, and I had. At the the the honor of watching you in those in Kennedy Center locations, and I was always awestruck that you knew everybody's name and and they seem to light up when they saw you because you had such rapport with the population.

Speaker 4  05:19

It's nice to hear that I did love what I did. We ultimately at the point that I left, and I left the Kennedy Center, I'd been there for 39 years, seven months, and we had 2000 people that were serving on an annual basis with around 800 staff members. It started out very small organization. I think we had something like, oh, I don't know if we had even that many. We had like, 80 staff, and I think 400 people, something like that, if there was even that many. So we've grown a lot, and we've expanded a lot, and also began serving different populations. And my feeling is we wanted to provide services. Somebody needed our services. We wanted to be there for them, and fortunately, I had a great board, and they gave me the latitude to do what I felt we needed to do. And I think it worked out quite well.

Speaker 2  06:11

So one of the things that I'm hoping our discussion can help listeners and viewers to to have as a takeaway is understanding, you know, how they should evaluate potential programs for their loved ones. And Marty, I know you're currently in retirement, helping with accreditation. Of course, Helen, you were vital to the process that we went through with our son and finding the right situation for him, and I always try to put myself back into that moment when I first learned of my son's situation. And I was fortunate in that. And if I get a little bit emotional at times, forgive me. But I was fortunate that I already do. Knew you, Marty, at that point, and you were one of the first phone calls I made after the day after we got the autism diagnosis. So again, I kind of want to step back a little bit and maybe get some insight into as professionals that have been on the other side and running these non profits. What do you feel that parents should be looking for, or caregivers should be looking for as they seek solutions for their loved one? So I guess maybe start with you Helen.

Speaker 3  07:35

So you know, I think the first thing it's really hard when you get a diagnosis and and emotions. It's a very emotional time, and it's a very emotional process. And what happens is that it can feel very overwhelming and kind of like there's a tornado of information you're getting. You know, you should do this, or you should do this. Everybody's got advice, everybody's got kind of words of wisdom, as they say, but there isn't really any words of wisdom that are real cogent, except for the ones that apply to your loved one. And so, you know, as a parent or as a as a caregiver, I think the first and foremost thing to do is to really look at that individual in what it is that they need. You know, where are they in their development? Where are they in the kind of personality they have? What are the things that they need. What are their strengths? What are their weaknesses? And stepping back a little as as the person with them, and stepping back and saying, Okay, what is it that? How do I define them? How do I define who they are as an individual? How do I define what they need? So that you could start to clarify in your mind what is really happening at this point. Because unless you do that, all you're doing is, is you're marching to the kind of what you think everybody else is saying that you should have at that point, which may not be what your son or daughter needs.

Speaker 4  09:22

It. It's a it's a very challenging time, obviously, for any parent, once they receive that diagnosis and their mind is going all over the place. And I think it's helpful to talk to people, talk to professionals in the field and and think about what is it that they're looking to get for their child? What are the services that they feel are going to be most effective in helping their child to grow and to develop? And I think that it's nothing that anyone should jump at. I think they need to do a lot of research, and they need to talk with a lot of people, because that initial. Step is a really important one, and it's going to sort of be a roadmap for the future of their of their loved one. So I think, again, rather than jumping, being frightened, and certainly understandable that somebody with a diagnosis is going to regarding their child is going to be a little frightened. This was what I what I expected. But as time goes on, little bit of time, and they talk with people, as you did. You sought out me because you knew me, which was great. And I'm sure a lot of the people in the communities know somebody that's involved with the field. That's a start, and that gives you a jumping off point from which to really say, Hey, these are the services that I think my loved one could really benefit from. And then finding the appropriate setting where those services would be available.

Speaker 3  10:44

And I think to just jump off of what Marty is saying too, is that it depends on where in the stage you're at. I mean, when you first learn of a diagnosis, that's like very different you are. I mean, you know what you did in reaching out to Marty was exactly what everyone usually can do, or should do, is to reach out to a trusted person, hopefully a professional, somebody that they feel that they could trust, to just give them some kind of okay, what's the first step? What's the second step? I don't need to solve this all in one day. I don't need to solve this all in the next three weeks, it's going to be a developmental process. And so how you look at a program at that first onsite, onsite of diagnosis versus what you might do, you know, five years later or one year later is very different.

11:40

I guess you know, one of the things that we had

Speaker 2  11:44

had in our kind of pre conversations before the podcast was talking about the uniqueness of individuals, so in how potentially, as a parent, getting, for example, an autism diagnosis, or, you know, having a child with Down Syndrome and having those preconceived ideas that maybe society is telling you what this person is, who this person will be, what their capabilities are. So there are assessments that take place. I remember our son spent, I believe it was three days, four days at VISTA to get evaluated to see if the program was right for him. How do you what would you suggest for parents in terms of steps, of what they should be doing to get that evaluation? And it changes too. So not just at the beginning, but you know later on in life, as the the the individual progresses.

Speaker 3  12:42

Yeah, so I think, you know, obviously, there's a lot that goes into choosing the right program for an individual and and you know, when they first, when you're first looking for a program, you're going to you're going to speak to trusted professionals, you're going to speak to school systems or doctors or those folks that you feel might be able to give you guidance to even narrow down where to go. And certainly, I think a lot of times, I don't want to discount what I'm going to call trade associations. You know there are, if you have a diagnosis, there are other people out there whose children or loved ones have that same diagnosis, and they usually there's an association. I think it's really helpful to try to tap into those, to hear what other people's experiences have been and kind of where they've gone. It's not just like a first step to kind of looking at the maze of possibilities out there.

Speaker 4  13:48

Yeah, I know that usually when a child has a diagnosis or receives a diagnosis, there's also in the school, if they were at a school, there's an interdisciplinary team that is going to talk with the families as well that I think could be extremely helpful, and they may suggest certain organizations that they think would sort of line up with the needs of the individual. Then it's up to the parent or family member to make a decision as to which of those would be most, most appropriate. You I indicated that I'm retired. What I haven't retired from doing is accreditations of rehab organizations. I work for an organization called CARF, and what we do throughout the country is we apply standards to organizations to determine whether or not they should be accredited. And those standards, I think, are great roadmap for quality services. So this may be a commercial instance at this point, but I do believe in it, and that's why I've done that for 40 years and continue to do that. So I mean, again, it's my perspective, but again, it's a perspective, because I've been doing this and I apply the standards. There are over 1000 standards when you go into an organization that we apply, from from administrative to program, programmatic. Standards, and I think that that tells a lot in terms of an organization. So it's like, if someone needed to go to a hospital, you want to feel that hospital is accredited. If you go into a school, you want to feel the school is accredited. I feel the same way about rehab organization. You want to be sure that that's accredited as well, because they go over all kinds of things, from from financial things, board requirements. A board meets on a regular basis. You know, is there a track record for quality services, all of those things, and just like, again, as I said, 1000 standards you apply. So as one stepping off point, I would think that, and again, from my perspective, it would be helpful for family members when they talk with the interdisciplinary team, or the family members or other folks that they know that have children with disabilities and where they're going. You want to, if you have an option, seek an organization that is accredited, because it is a good roadmap for quality services for every individual that they serve.

Speaker 3  16:00

Sorry, I was gonna say I totally agree. I mean, we, I'm representing VISTA is accredited by the National Commission on Accreditation of special ed services, similar, similar. They're just different kind of organizations. And I 100% agree. I think that, you know, having to speak to a level of standard in best practice outside of you know, your own organization standards is a really helpful thing,

Speaker 2  16:30

and I guess touching on that a little bit with accreditation, if I'm a parent and I Look at an organization and it was accredited six years ago, eight years ago. How frequently should you look for those accreditation? Credentials? Are they automatically reviewed?

Speaker 4  16:53

So in regard to CARF, it's the highest level of accreditation an organization could receive. As a three year level of accreditation they could also possibly get if they're just missing few things, but the surveyors that go out and view the organization, usually for two, three days or more, feel that the organization is moving in the right direction. They need a little bit more fine tuning. They may give them a one year level of accreditation, but I think the key is, most importantly, that the organization is accredited. But I mean, once an organization is accredited, that would mean, if it's a three year, that every three years, surveys would come back and re accredit the organization. So it's not like they were accredited once and then it's forgotten, right? It would be an ongoing process,

Speaker 3  17:38

excellent, yeah, and the organization is required to kind of acknowledge that they are currently accredited or not, and it's

Speaker 4  17:49

a good question for family members to ask, Are you an accredited organization?

Speaker 2  17:54

So stepping back from the that side of things, the two of you have bared witness to the struggle. So can you talk about the struggle a little bit? Where do you see families most often struggling? Is it with school systems, medical systems, adult services, transition? What are the key areas of struggle that that you see in any insight into maybe shining some light on that we're helping families to see or feel better about it, or perhaps even think that you know the struggles. I know that. And again, I'm kind of talking from a personal standpoint. You know, when you're in it, sometimes you feel like you'll never get through it. So if you could talk about that a little bit,

Speaker 3  18:46

yeah, you know, I think, I think there's moments of transition that create that kind of bring the struggle back up again. So I think, you know, when a child is first going to school, that is going to create a type of struggle for those families that they're going to have to kind of really look at, how is that child engaged in school? Are they getting the proper support services? Are they in the right setting? Are they in the right classroom setting? So there's certain things that the family is looking at at that point. And then I think there's a there's times when, kind of, for example, when they go into the high school setting, or they they go into a more adolescent teenage years, which is, of course, that's when peers, you know, your peer relationships, are of utmost importance to any of the individuals that we, we know and work with and so how do you kind of maintain that? How do you, how do you work through that and allow for them to be accepted or included in kinds of activities, and probably for both of us, you know, the adult services world is the cliff, right? It's the time when funding. It's the time when you switch from an entitlement kind of world to a world where you have to meet eligibility criteria. So it's, it's a, it's a big time of transition.

Speaker 2  20:13

So I would imagine you're referring to, typically age 22 Yes, so and I will personally say that was a time period for us where we we felt lost, and we went through situations where we had to go in certain directions to get the results we wanted for our child. And part of that is, and I'm going to speak in referring to other people going through this a little bit, because when you're battling, for example, with a school district, and you reach a resolution, oftentimes those resolutions come with caveats that you can't talk about those resolutions. So I've met families that wound up hiring attorneys and doing things like, you know, pulling their their child out of the system and doing or what's called retroactive placement. Or, I forget there's a term for it, but choosing a different path and then having to go back and fight for resources. So he can you talk about age 22 a little bit more, because that is a big one. And you just mentioned

Speaker 4  21:35

if we could step back just a minute. So then you're right, that is a major area that parents are really concerned about, especially because you feel that there is a funding stream up until that point, and that at that point, that's questionable. But again, you know, up until that point, you know, there's an IDT team, hopefully that will help you. So if it's a family before that searching for the proper placement, I would rely heavily on the information that IDT team gives you, and then go to organizations yourselves and talk with the see how the interactions are occurring. Talk with staff members, if you can, if you can, find out some parents names, and talk with the parents about what they see as beneficial to their family member and what they're concerned about. So in that initial stage, before you get to age 22 it's important to be sure that you feel very comfortable that the placement is really the right placement to your family member. And again, you do that by doing a lot of research, not just online research, but actually going to various places, seeing the interactions, talk to staff, talk to family members, get names of family members, and I think that could be very helpful. So you're sure at that point that your family member is placed into a proper setting. When you get to age 22 that's a whole other challenge for sure. And yeah, I mean, and there, you need a lot of advocacy once you you know it may be the same organization, depending on on what services that organization provides that have been providing, haven't provided to your family member, or you may feel at this point and it may be necessary to have that family member go through a different type of setting, but that's again, so that's a whole other area that needs to be looked at. And again, you need to be sure that you have the proper support that enables you to be sure that your family members is placed properly.

23:30

Can you clarify IDT

Speaker 4  23:33

interdisciplinary team? Okay, yeah, yes. Usually the school systems have an interdisciplinary team where they're meeting to determine the best placement. But then again, that's information that you need to have, and you need to work together in being sure that you're all together, that this is a proper placement for your family member.

Speaker 3  23:50

I think it's also, I'm going to just speak as a parent now, just in terms of working with my child, is that, you know, one of the things as as as he was, kind of crossing that threshold into adulthood, is to realize that the timelines, the typical timelines of the typical young adult, don't exist, and that suddenly you are in a timeline that might be stretched. And so I would always say to myself, well, I'm in a 10 year timeline. I'm in a 10 year timeline. And if it was not 10 years, that's fine, but it you have to, like, not compare your son or daughter or your loved one with the typical population that's out there. I mean, that's just makes it that much harder. So that's just, it's kind of a random thought, but it's, it was one that's helped me a lot,

Speaker 2  24:46

that that topic, always, I frame it in my mind with my son learning to tie his shoes, and, you know, he has quote, unquote, normal siblings, and. And of course, they met those milestones early on, but it was such a joy to us, even though he was substantially older. But the moment he learned to tie his shoes, it was a big victory. Yeah, so we try to, you know, as parents, take joy in that as well, yes,

Speaker 4  25:18

with your son, obviously. Well, the thing too, though, is that at 22 different individuals are at different levels. They have different skills, they have different needs, they have different interests, so different organizations or service providers might have more expertise in a particular area than another. So like we're talking if we're talking about vocational there may be organizations that really excel in that area, that that provide excellent training and job placement and coaching services, where somebody needs some other types of services, or might be another organization that would be better skilled and better appropriate for that. So a lot of it is contingent upon what the specific needs, wishes and desires are for the young man or woman that is moving on at age 22

Speaker 2  26:13

it's almost a cliche to say it, because it is a cliche, but there's the old saying that the the squeaky wheel gets the grease. And could you maybe touch on how parents and guardians can maybe best advocate for their loved ones? I know that there are, there are heavy emotions involved, so you know, you can insult me all day long, but if you hurt one of my kids, my fangs come out. So, you know, there's part of, I think being a parent in those situations, you have to step back, take a breath and just work through things without, you know, turning into a grumpy old man or a grumpy person. But are there there things or recommendations you would make for people facing these bureaucratic challenges at times on how to get through them?

Speaker 4  27:10

I think it's important to listen. If you're talking with professionals, you know, hear them out and you know, parents, I think have a great better feeling than anybody else for what's right for their for their son or daughter. They don't always have the perfect perspective, but they have a really good perspective about so I think you want to hear what the professionals have to say. And again, as in any case, it's, I think it's good to sort of informally interview different organizations. Again, you're going to have a feeling, I think, how your child is doing at age 22 and what their interests are and what their future is going to look like, although not very, very clear, but you're getting a better picture of it all, all the time. So if you see that that your family member has a real interest in vocational area today, maybe, maybe they like cooking or meal service, and it's something that they seem to light up with when they're involved in something like that, then you're going to want to say, Okay, well, we want to have them placed in a place that maybe provides good vocational training and opportunities in an area that interests them. So I mean, there are so many different factors at that point, but most importantly, you're the person that knows mostly what they better than anybody else. You know what the interest and enthusiasms are for your loved one, and then you talk with the professionals to see that they're on the same page.

Speaker 3  28:37

And I would say that there's like as a parent, there isn't a perfect placement. You know, perfection doesn't exist and and your son or daughter can be quite successful in a less than perfect, perfect the way you think a perfect program. And that doesn't mean enough a bad program. That's not what I'm saying. But just it, it doesn't have to be perfect. It doesn't have to be the perfect fit. It doesn't have to be the perfect place. You know, it could offer as long as it offers kind of the the General Services. And then I think it's really also somewhat trusting your gut, like it's thinking about things like, are the staff treating individuals like watching, watching the staff? Are they happy? Are they smiling? Are they treating the individuals they're working with as they're going about their day to day with respect, as opposed to treating them with condescending, you know, being condescending, or whatever it's looking at the space. Does it feel joyful? Does it feel productive? Does it feel like people are generally really happy where there are so there's those qualitative things that kind of, you know. Once you hit the first kind of obvious stuff, like, what kind of services does the place offer, you know, what are the kinds of programs that they offer? Is it individualized as a group? Is it, you know, etc, etc. Then you're looking at, okay, what does it feel like? What does it feel like?

Speaker 4  30:17

And again, be sure you talk Absolutely. Be sure you talk with other family members too. Not family members, but other family members of individuals that are services to get their perspective as well. So you want to see how the staff interact with them. You want to get input from family members of other individuals served. I mean, depends on how much you want to go through the weeds. I mean, the other thing you may want to do is see, is there a board of directors? How often does that board of directors meet? You could look at financials. I mean, you know, you can get my 90s online to see, is the organization a viable organization? You know, is it organization that's going under or, you know, do they look like a strong organization? I mean, you're making a commitment, you're placing your family member there. You want to be sure this is a strong organization, and they're doing the things that they need to do to ensure that they maintain good quality services.

31:07

I think there's an elephant in the room,

Speaker 2  31:10

and that is funding so and I talk a little bit about VISTA for a second, and this is from personal experience. Our son was there and is still connected to VISTA and day programs. There's a struggle for funding. We had numerous conversations with state agencies. We had looked at our own finances. There were in a magic world to your point of wanting that perfect solution there. There is no perfect solution. The one thing that sort of and again, each child, each individual, is different, and the thing that made us gravitate to VISTA was the mission with VISTA to help foster as much independence as possible. But anyway, I'm sorry, I'm off on a tangent. If you could talk about the funding issues, and I think in the environment that we're in that's becoming more it's always a big issue, but it's becoming more and more of an issue. The other aspect of it, as a parent, I I've, I've witnessed where, you know, frankly, we made decisions to advocate for certain things, and we pushed for certain things to try to get the best outcome we could. And and I witness families that go with the flow, maybe too much sometimes, and don't advocate enough. So again, just roundabout conversation, if you could talk about funding, and maybe the relationship to advocating for funding and how important that

Speaker 4  32:52

is, that's very important. I mean, obviously that's most important, because if you don't have the funding, in most cases, families aren't going to be able to afford the services. So, I mean, there should be a feeling of entitlement on the part of the family, because obviously there's a responsibility here to provide the proper services for the individual that is requiring the services. So advocacy is really important. Many, families are advised to get attorneys. I mean, if things could be worked out through the state without that to the satisfaction of the family, then that's wonderful in many cases, though very unfortunately, that is not the case, and the families have the responsibility of the advocates for the family member to be certain that they get out with funding. So I would say that family needs to do whatever they can to be sure that their family member is in the proper setting.

Speaker 3  33:50

It's like being the pleasant nudge, like, nudge, you know, it's like, it's like, you can't rest, you can't ever rest. You are the person, and it's it goes back to what Marty was saying before about listening to the professionals, obviously having a good relationship. If your fangs come out all the time, that's not going to serve you well. But I think that, you know, it's the it's constantly pushing, constantly pushing. If you send an email, or you make a phone call and you don't hear after a couple days, make another phone call, push, push a little bit further. Reach up to the next level of supervisor if you need to, if you haven't heard for a while. So it's kind of, it's kind of being you know, you're saying your pleases and you're saying your thank yous, and you're appreciating when you get what you need, but on the same token, you're not letting people off the hook easily. And so because funding, I mean, and it depends, obviously, if you're talking about a child, you're talking about the education system having a responsibility to support. The services for that child. If you're talking about an adult, it isn't guaranteed that they're going to get funding. So it is really working to try to find funding where funding is available, and trying to have your son or daughter be eligible for that funding. The other thing that I would mention is that I would not be afraid to use state representatives, state legislators, to use the people that are in the government circles that represent us to help speak on your behalf.

Speaker 2  35:39

There's a syndrome that I maybe took liberty in labeling years ago for myself, in dealing with clients in my occupation, getting them through some concerns that they had about cost, and that is like the fear of the Pro and what, what I've kind of witnessed, and you, I'm sure you've seen this much greater degree than I have, is that there are families out there that, for example, and that won't engage with an attorney because they're afraid of the cost and the you know, I I also know specific examples of X number of dollars being spent with an attorney to advocate that have saved 1000s upon 1000s of dollars, that resources, that that are able to be that are there for that child. So can you talk a little bit about, and we're gonna have a future podcast, by the way, with advocates attorneys specifically about this topic, but just want, for years as

Speaker 4  36:43

a parent or the key family member in charge of the future for the family member that requires services, you have a vital responsibility to be the main advocate for that individual. And from my perspective, that means going to whatever extreme, but going to whatever level you need to go to be sure that your family member receives the proper services, and your parents have a really good feeling for what that level is. And I it's easy to be shot down. But the thing is, the perseverance does I find pay off, and if that perseverance requires getting legal support, then I would encourage families to do that.

Speaker 3  37:27

And I mean, here I am. I'm a professional in the field, and I have hired an attorney to help with my child, because you don't know what you don't know. You can't know everything that's out there. You can't know all of the nuances of the statutes and the laws and the eligibility criteria and and you, I mean, I think you nailed it before when you said, you know an attorney, people are afraid of the cost of the attorney, but that attorney can save so much for years down the road. And so it's kind of like, don't be penny wise, pound foolish, that old saying, you know, I think anything you could do to help you bolster your knowledge, even if it costs a little bit, sometimes it's worth it.

Speaker 4  38:16

Excellent, because unfortunately, you know, the state has a responsibility to keep costs down. The families have the responsibility to be sure that whatever costs are necessary provide the highest level of care for their family member is required. So you have you're coming in two different places, and recognize that you can't fault the state for their responsibility. But yet, the family has the responsibility to provide whatever support they need and whatever advocacy is required to get their family member where

Speaker 2  38:48

they need to be. And there's such a divergence from state to state. I mean, we're sitting here in Connecticut, and I know from clients that I deal with across the country the outcomes are can be

Speaker 4  39:02

vastly different. And I see that directly doing accreditations throughout the country, very, very different. And actually Connecticut, I think we're more fortunate than many states.

Speaker 2  39:13

Yeah. So I could go on for hours talking to the two of you. And very much. Again, probably have thanked you multiple times today, but thank you again for sharing so much of your experiences with us.

39:29

Let's talk about being hopeful for the future.

Speaker 2  39:33

Let's talk about where things are today and where you hope they evolve to There are obviously concerns that we all have about the infrastructure that's out there supporting these communities, and there are holes in that infrastructure. But what are you hopeful to see happen in the future, helping this population?

Speaker 4  39:57

Obviously, what we'd like to see these. These people are our future, so the funding needs to be there to be sure that each one of them is receiving the best services to allow them to reach their greatest potential. So my hope is that there is going to be more flexibility from the state in providing those services. And I'd also hope that maybe at some point in the future, there is going to be some alliance with the business sector and the state to provide additional supports and additional services. Again, these people are the future for us. They're the future for the United States of America, and the funding needs to be there, to be certain that they reach their greatest potential.

Speaker 3  40:43

Yeah, it's good business. I mean, you know, it really is. I mean, to think that not supporting an individual with disabilities, to be able to get a job, to be able to live independently, to be able to be included in a community, is nonsense. It's good business. It's good for the it's for good for the country, it's good for the community. It's good for us as human beings, right? And so I think if I had to say a hope for the future, it's kind of similar. It's like, you know, the hope for the future is to see that people, human beings, can actually welcome into their communities in very real ways, individuals with disabilities and understand that their differences are what make us a wonderful society and a wonderful country, a wonderful town, country, state society.

Speaker 2  41:39

Thank you. I'll speak a little bit

41:44

to my son in this regard,

Speaker 2  41:47

he I have so much joy when I'm out with him, because he's like the mayor of this little community. When he was in high school, we'd be there at events, and he would be high five. I mean, there was just so much love around him, and I think he lifted the quote, unquote normal kids up to a higher level of understanding and and support. And even today, now that he's he's done with schooling, he'll be working in front of my building, washing the windows, and people stop to talk to him, because he more people know my son than I then know me in the community, because he's just out there and he's a happy kid. So to that end, you know, this is obviously a very heavy topic, and I'm thankful for those of you who are listening to the podcast today, we're going to cover a lot more topics coming up. And again, we know that this is some difficult things that we're going through, but the other thing I want to impart to you is that there's a lot of hope out there. There's a lot of joy, there's a lot of beauty in the process, and there, there's, there's a lot of a lot of satisfaction in seeing and witnessing the progress that individuals like this make day to day. So thank you again. Thank you.

43:23

I Chapter Two adoptable ideas.

Speaker 2  43:30

So we all like lists, and I go back to my college days and watching David Letterman's top 10 lists that he would do at the end of end of his program or beginning of his program, I don't remember what was up late, so I don't remember what happened. But are there three or four things or action steps that you would recommend specifically that families and caregivers put in place to best advocate and look out for their loved ones?

Speaker 4  44:01

Well, I mean, you mentioned one of them, which is understanding your child, which is vital. And of course, hopefully, and I believe to be the case, family members do want to understand their child, and they always want the best for their child, so the advocacy part is vital and not to give up. I mean, because sometimes you're going to get a no, but that no is not going to be a hard No, but it's a no that you need to advocate against and never give up, because it's your child, and you have a responsibility to be certain that your child receives the services that are right for them, to get them in the place where they could really be great individuals that are enjoying their life and and you can feel good about watching that, and you talk yourself about with your son, how pleased you are, and seeing that he's happy and that he's comfortable and he's feeling fulfilled. And I think that's vital.

Speaker 3  44:55

I think do your research. You know, there's, there's going to be all this. Information that's going to be coming at you. And so it's, you know, it's speaking to people. It's looking at trade associations. It's looking online, you know, it's talking to other families who might have similar circumstances, but really research what's out there so that you have some understanding of what's available to you and your loved

Speaker 4  45:21

one, yeah, and researching, talking to other family members, as well as researching the organizations that you feel might be most appropriate for your family member.

Speaker 3  45:30

And then, and then, don't give up. Just be that, be that advocate, be that, you know, mama or papa bear that's out there constantly knocking on doors, like I said, not waiting too long to get an email back or to get that phone call in a pleasant way. But persuasiveness is really powerful,

Speaker 4  45:49

because your family member is counting on you to be that advocate.

Speaker 2  45:52

So thank you again, Marty and Helen, for being with me today. I appreciate it. This is new to us, and I'm grateful for you working through the newness with me a bit, and to the viewers out there that it's always interesting when you do something like this, that you're going to put out into the world. You don't know how people will respond, but I would love to hear back from people that have an opportunity to see this, what your experiences are, if you could share with us some feedback on topics that you might want us to cover again, our efforts here are to try to be a resource for families that are facing these situations and individuals that are facing these situations. So there are many, many heavy topics to deal with, and we hope to do it in a positive manner. And would really welcome your feedback as well, if you could, either, you know, to use the phrase that we hear today on the internet, like and subscribe, but also send us some feedback that would be very much appreciated, and thank you for viewing. You