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Older Adults Caring for Adult Children with Autism with Lois Shingler

Episode #53March 30, 2021

Over 75% of adults with developmental disabilities live at home with family. There is a growing population of aging caregivers of adults with developmental disabilities, in part due to increased lifespan and extensive waiting lists for residential services (The Arc Autism Now).

In honor of World Autism Day, today’s podcast episode focuses on older adults who are caring for adult children with autism or other Intellectual or Developmental Disabilities (IDDs).

In this interview, Lois Shingler, an attorney and co-founder of Peter and Paul’s Place shares her experience of being 70 years old while caring for Paul, her 45 year old son with Autism. She also provides several tips for other aging parents caring for their adult children with IDDs. Here’s a peek inside the episode:

  • [10:45] Lois describes her experience of entering older adulthood while caring for Paul, her 45 year old son with Autism
  • [17:53] Learn what you need to plan for if you’re an older adult caring for an adult with special needs, from transportation, to housing, to finances, to who will assist your loved one.
  • [28:00] A man on his deathbed who feared for his son who was living with Schizophrenia.
  • [31:50] The emotional angst of planning for who will care for your son with special needs when you are no longer able to.
  • [42:31] Lois shares her secret to maintaining her mental health through it all.

Watch a video clip of our interview, here:

Recommendations for Planning for Caring for Adults with Special Needs When You Are No Longer Able to Care for Them


  • Make a plan for how your loved one will attend social activities, supported work programs, community functions, etc.
  • Contact your local Area Agency on Aging and ask to speak with a mobility counselor. Plug in your zip code and find your local Area Agency on aging here.

Housing options

  • Make a plan for where your loved one will live and with whom they will live.
  • Need help finding housing for your loved one? Contact your local Area Agency on Aging and ask to speak with a specialist in housing for people with special needs. Plug in your zip code and find your local Area Agency on aging here.

Financial security

Identify who will be the steward of resources for your loved one with special needs (e.g., guardian and/or conservator)

  • If you do not have a family member, consider reaching out to a microboard. A microboard is a formalized “circle of support,” a non-profit corporation consisting of a small group of individuals who assist an individual with disabilities in creating and implementing a life plan. Google to find a microboard near you.

Social Needs:

  • Planning for the social needs of your loved one is very important. It may help to write down the types of activities your loved one enjoys and which community programs they regularly participate in. Write the name of the program and contact information, as well as the contact information of points of contact within each program. For example: If your loved one is in a supported work program, write down the program’s name, contact, the agency where your loved one works, etc. Consider storing this information in multiple locations (e.g., with your loved one, with you your last will and testament, with a social worker who is assisting, in your loved one’s medical record, etc).

Your Own Mental Health Care

  • Caring for an adult child with intellectual or developmental disabilities can add mental and physical stress to an older adult’s life, not to mention the emotional turmoil of planning for your adult child’s life without you. It’s essential that you attend to your own mental health needs as well. This may include having a community of support from friends and peers experiencing similar concerns at this stage in life, and it might also mean mental health care from a professional mental health provider.

About Lois Shingler

Lois Shingler is an attorney who has served as a Hearing Officer for Special Education Due Process hearings for the State of Georgia, as a Special Assistant Attorney General representing the Department of Family and Children Services in several counties in Georgia, and as Guardian ad Litem representing children in contentious divorce and custody cases.

Lois is co-founder of Peter and Paul’s Place, Inc., a 501(c)3 organization, dedicated to establishing an inclusive residential community built around a Community Center. Lois’ son, Paul, is 45 years old and is on the Autism Spectrum. Issues involving Paul’s education, care, working life and long-term support led to the formation of Peter and Paul’s Place, Inc.

Peter and Paul’s Place, Inc purpose: Adults with disabilities often find themselves Isolated after they leave high school. We want to help change this by providing a place and a way to connect and engage. There is a great need to provide residential options, connections and community engagement for adults with disabilities particularly as they and their parents and family members age. Learn more at

Learn more about living with autism after 65 years old



Dr. Regina Koepp 0:00
Over 75% of adults with autism and other intellectual and developmental disabilities live at home with family. There's a growing population of aging caregivers of adults with developmental disabilities. This is in part due to increased lifespan of both the caregiver and the person living with an autism spectrum condition or another intellectual or developmental disability. And also due to extensive waiting lists for residential services. It's also due to improved health care and resources for people living with autism spectrum disorders and other intellectual and developmental disabilities. So in honor of world autism day, which is Friday, April 2. This podcast episode will focus on older adults who are caring for adult children with autism, or other intellectual or developmental disabilities.

Dr. Regina Koepp 1:06
I'm Dr. Regina Koepp. I'm a board certified clinical psychologist and I specialize with older adults and family. I created the psychology of aging podcast to answer some of the most common questions I get about aging questions about mental health and wellness changes in the brain like with dementia, relationships, and sex, caregiving, and even end of life. Like I say in my therapy group, no topic is off topic, we just have to have a healthy way of talking about it. So if you're an older adult, or caring for one, you're in the right place. Let's get started.

Dr. Regina Koepp 1:48
Today, I interview Lois Shingler, who is the mom of Paul, who's 45 years old and on the autism spectrum. Paul lives with Lois and Lois is here today to talk about how she is planning for the time when she's no longer able to care for Paul, and the resources that she's putting in place and the recommendations that she has for other families for planning for the time that you if you're an older adult caring for an adult with special needs, for the time that you are no longer able to care for your loved one. This is a great episode to kind of speak to this under represented discussion around caring for adults or even older adults living with autism spectrum disorders, or other intellectual or developmental disabilities. With more awareness around autism, and more awareness around disability rights. This is a really important episode. I also want to say that I recognize Today's episode is focused on the caregiver of the person living with autism to help balance this out a bit because the caregivers perspective is one perspective. And then there's also the perspective of the adults living with autism. And so I have three articles on the show notes that link to where you can learn more about living with autism after 65 years old. So I hope that you check out those resources as well. So let me share a little bit about Lois Shingler.

About Lois Shingler

Dr. Regina Koepp 3:38
Lois Shingler is an attorney who served as a hearing officer for special education due process hearings for the state of Georgia as a special assistant to Attorney General representing the Department of Family and children's services in several counties in Georgia, and his guardian ad litem representing children in contentious divorce and custody cases. Lois is co founder of Peter and Paul's place which is a nonprofit organization dedicated to establishing an inclusive residential community built around a community center. lowest his son Paul is 45 years old and is on the autism spectrum. issues involving Paul's education care working life and long term support led to the formation of Peter and Paul's place. So let's jump into this interview with Lois shingler. Oh, one more thing before we jump in. So in the interview, you're going to hear some strange electronic sounds a couple times you're going to hear an email coming in. That's not strange, but you're going to hear some strange but it kind of sounds I was literally in shock. So listen till the very end to discover why you might hear some sounds throughout the interview. Okay, now let's jump into the interview with Lois Shingler

Dr. Regina Koepp 5:01
Lois Shingler, thank you so much for joining me on the psychology of aging podcast. You're here to talk about something so important. That goes often on discussed and unacknowledged. as people age and families age is what you're here to talk about a family- Your family. Your family and millions of other families that often are left out of the conversation around aging. Correct. Thank you so much for being here and and for sharing your mission with us today. Can you share a little bit about who you are and what you do?

Lois Shingler 5:38
Sure, thank you for inviting me to do this. It's such an important topic that is just beginning to get the attention that it really deserves. And it needs. I'm an attorney, I've reached the age where I can get could have gotten that vaccination in the very first round, just turned 70 and I have practiced since 1974. My interests, I first started practicing with Georgia legal services and sort of morphed into really an advocate for people with special needs primarily because my son, who is now 45, is on the autism spectrum. And so your focus changes when you have a family members, everybody knows with any kind of special need, whether they're gifted or have some particular disability. So you know, your focus with changes and mindset over the years. It's funny, I went to law school, primarily because both my parents were social workers. My father was Paul Deutsch Berger, who was the Associate Dean of the School of Social working at UGA, when it was first first formed, and my mother was a gerontologist, she, she started the Council on Aging, or helped start the Council on Aging in Athens and the senior center and did the same thing in Nashville, we were there work with the senior center there. And so I grew up going to meetings with mom and learn to really love and enjoy being with people who were older, I learned all kinds of interesting skills, pottery and sewing and so forth, but mostly just learned, really was able to sort of enjoy the richness of so many different kinds of people. So that's sort of my background. And and folks will tell you that I'm as much a social worker as an attorney, because what I primarily do now, or have done for the last, oh, gosh, 20 years, is guardian ad litem work in superior courts. I represent kids in divorce situations. So between that and my work as... I was as hearing officer for due process cases for special education for a while, but having done that a long time, but mostly just have been an advocate for my son and people with special needs.

Lois Shingler 8:05
My biggest interest right now I am still doing a little work as a guardian ad litem, but my biggest tip is right now it's a nonprofit that I have started along with one of my good friend Charlotte McKinnon called Peter and Paul's place my son's name is Paul, her son's name is Peter, just so we got sort of got to the name. And it's an organization that we have our eventual goal is to have a residential community, a place where people with disabilities, particularly intellectual developmental disabilities can live with the, with their neighbors, people who do not have developmental disabilities, and to have an inclusive community that has support they are right on the grounds a social worker,

Lois Shingler 8:56
and maybe folks who are training to work in the field, they are on the grounds with them, and to have all kinds of opportunities for social activities for educational activities, for connection with the community and for support. So that's our eventual goal. Our immediate goal is to try to establish a community center in Tucker, which is where we're located that will provide space for social educational activities, and will also be open to the general public for use as an event space. And we want to center most of that around the arts, you know, the visual arts, drama, music, things that people with disabilities enjoy just as much as folks who don't have them. So that's a little bit about me. I guess the important thing that that I've left out is that my son Paul, continues to live with us. And so all of the issues that we might talk about today are things that I've dealt with personally and with some people that I know, have dealt with personally. Yeah. And he works, he's been fortunate enough to have the support of supported employment, brings in associates a wonderful organization, and Atlanta supports him. And he has caregivers, that when there is no pandemic, take him to activities, and we'll stay with him for the weekend in a condo that he and Peter own, they haven't been able to stay there for a year, but that hopefully will be coming up. So I have a personal connection as well as a sort of legal and intellectual connection with this whole area.

What's it like to be entering older adulthood while caring for Paul, your 45 year old son with Autism?

Dr. Regina Koepp 10:45
Yeah. And one of the the under discussed topics that I'm so delighted that you're here to talk about is your experience of becoming an older adult who shared with us that you are 70, and your son is 45. And so I know from our previous conversations, you're planning and thinking about, what will your older adulthood look like? And what will your son's aging process look like? And where will you live? Where will he live? How do you negotiate and find all these resources? And, you know, what is the state of things for folks with special needs who are growing older, and who have aging parents, perhaps, who they live with? And so I'm wondering if you could share a bit about your experience of aging yourself with an a-typical son, son on the autism spectrum, who has a condition on the autism spectrum, who, you know, is 45, that's my age, your son's aging process will look very different than my aging process, by the hands that we were dealt in life. So can you share a bit about that about your own experience of becoming an older adult and seeing, you know, your son is in middle age, and just all of the, what you're thinking about at this stage in your life.

Lois Shingler 12:16
Glad to. Um, so we are, we are very fortunate. My son is he's 45. But you know, he is very self sufficient, he cannot drive, he cannot manage a bank account, he's, you know, doesn't know how to manage money period, can't really plan meals, you know, can't really, you know, cook, he can do things in the microwave, then he can be left alone and can entertain himself, he loves sports. So we're lucky in that sense, there are a lot of people who have family members who need pretty much around the clock care and a lot of physical assistance, and Paul does not need physical assistance. So we're lucky in that sense, we're also lucky because he has a sister who is close by him as a family, and you know, who can make decisions, and help guide him when we're no longer here. So in that sense, we are very lucky, a lot of people don't have that. A lot of people don't have those resources. So as we get older, especially during this pandemic, he's been home a lot. So I mean, all the time he had so entertaining him getting him sort of motivated to do things has been much more difficult now that I'm older, and you know, you get past the parenting stage where you're, you know, you kind of don't want to have to make, you know, plan meals and plan activities and try to keep people motivated. So that's one thing. The older you get, the less less energy you have for that kind of thing. But there's some very real physical problems with aging parents taking care of aging adults. My eyesight, it's not wonderful at night when I'm driving. And so one of his jobs when I hope it comes back, it hasn't, but he worked at a theater. Nobody worked in the evening. And so we would have to drive and take into work and then pick him up and usually taking him to work wasn't so bad, but picking him up. You know, driving at night is a problem. So transportation is a problem. Transportation just in normal circumstances, as you're older, you you know, you don't want to be in the car all the time, you have less patience. And you know, your reaction times aren't that good. So driving all the time to get a family member to work or to a social activity or to a medical appointment can be exhausting. Where we're also lucky and then I have enough technological knowledge, not a lot enough to be able to handle things like doctor's appointments and advocacy and you know, Taking care of things that need to be done on the computer. A lot of families don't have that. We as as I age, I find that there are a lot of things that I just don't have the energy for, for example, tomorrow. My son, and Peter both participate in the Marcus Jewish Community Center Summer programs, and they're starting tennis, which means that now every Tuesday, we need to get into tennis, and bring him home. And so, you know, when you're a young parent, and you have kids who are playing soccer, or who are doing things that require your attendance, it's different than when you're older. And you don't necessarily want to go sit for two hours...

The responsibility of taking care of another person, as you are getting to the point where you're feeling like there are a lot of things you can't do for yourself anymore, that don't come as easily, is hugely problematic. The emotional stress, as well as the physical stress, there are a lot of folks with disabilities who need physical help, and their parents can't provide it. So you know, as you get older, there's so many things, the transportation issue, the connection issue, the advocacy issue, and especially in Georgia, we all have to be advocates. And no matter what training you have, let me tell you right now, no matter what state you live in, and no matter what country you live in, you've got to be very vigilant because those issues don't go away. And if you don't fight for those things, they don't happen. And if anybody's spent anytime trying to deal with social security issues, or Medicaid issues, or mental health issues with organizations that are state run, or even private, privately run, trying to get funded, it's very difficult and very frustrating. And sometimes you can do it on your own. And sometimes you can't and there's so many people disabilities, you do not have family members support that can do this. for them. One of the reasons we started Peter and Paul's place many years ago, was that when my son Paul and his friend Peter graduated from high school and sort of went off into the Never Neverland. So many of the people he went to school with had parents who work full time or only one parent in the household. And, you know, those those individuals ended up totally disconnected from services, from social activities. And so there needs to be something available to those folks to allow them to live in the community and to, you know, have a full and supported and, and happy life - a life that that they can contribute to others.

Lois describes what you need to plan for if you're an older adult caring for an adult with special needs
Where will your loved one live?

Lois Shingler 17:53
So aging. As we age, it becomes really critical to try and figure out what is going to happen, you really need to plan. For our son. As a you know, I said earlier, we're really lucky enough to have a family member who will sort of manage his care, but he needs a place to live. And so one of the things that I would say to people, when you're when you're thinking about what's going to happen is to access whatever website you can find in your community, that talk about housing for people with disabilities, just start doing a little computer search or Google search, to try to figure out what's available go to the state, most states have departments of behavioral science or some community health department that will have lists of who to go to look on your computer for for any kind of resource that tells you how to get help for social security issues. So security is huge. If you don't access what's available, then your family member is really missing out on a lot of the options that are available to them. So think about where they're going to live. There are group homes, most of them allow between only four and seven residents, group homes have their own set of issues. You have to really research to figure out was this a place where you know, your family member is going to get the support they need in the connection they need in the transportation they need. And what's going to happen when you're no longer there who's going to manage it.

Who will help manage resources and/or become conservator or guardian?

Do you have a family member that's going to manage it? There are all kinds of models that you can find where people have their own residences where they have one or two roommates. That's what my son and his friend Peter have, they have a condo that we bought for them. Actually they bought with with some of their own funds, but a condo that they were trying to get them acclimated to live in with support. It's been difficult with the pandemic. But that's kind of the plan for us to have, you know, our daughter, sort of look over that. But if those if you don't have family members look for something called a microboard, a microboard is a community organization run by volunteers who know your family member, and who will make decisions for them. And there's a Georgia microboard Association, they've got a good website that you can access, I'm sure most states have something like their programs like the arc larch, which I think was started, I'm not sure I think was in Canada, there's one house here in Atlanta, there is another that's being planned, where you have people with disabilities living with people who are neurotypical individuals, and they support each other and become kind of a family and they're very active. Atlanta's got a wonderful, wonderful program that does all kinds of amazing things. So look for situations like that there are residential communities, Georgia, is far behind a lot of states, California, New York, Pennsylvania, three states that come to mind, Illinois, that have programs that provide residential solutions for people with disabilities. You need to start looking at that now.

How will finances be managed and needs be paid for?

And you need to start investigating it now and find out if a waiver will pay for it. So Medicaid waiver, and if not, how do you fund it? And, you know, are there scholarships? Do you have other mechanisms for funding it? If you don't have a special needs trust? I think that that's something that's well worth exploring. And a special needs trust is a particular trust set up to support individuals who have disabilities. And generally there, there are many different, there's a couple of different kinds of trusts, one that you can set up immediately and fund immediately and one that is funded upon your death. And both have tax consequences both have consequences with regard to what benefits you can receive under Social Security, under the waiver programs. So you need to you need to really talk to somebody that's something that's well, we're spending a little time and money to investigate, but you have to have a special needs trust.

Dr. Regina Koepp 22:25
The special needs trust that is done with an attorney. How would people find one near them

Lois Shingler 22:31
The best way to start I think is to go on your your state bar website, I think every state has a bar website, and most of those states will tell you will lift people who accept cases in certain areas. And I would check that first. In Georgia, you can't really say you specialize in something. But if you can list the areas that you belong to, and one of the areas to check on a state bar website, they're always smaller committees that you can belong to a sections, bar sections. So you look for somebody who you know, is a member of the of the trust and estate section, or somebody who's a member of the disability or child welfare sections. And that's a good way to kind of guess, to start, you know, guessing, and then you call those offices and you say, Do you new Do you do these? How many do you do? What do you charge for them? You know, just get as much information as you can about the process. If parents have other you know, if some of your viewers have others in their communities who have faced these issues, then they very often they will have dealt with somebody. And you can ask them who who they dealt with and how, you know how easy was it to deal with somebody. But you really do need an attorney there. There are tax issues that are important to really take a look at and to consider when you're setting up trusts for people with disabilities or for anybody. There are also security issues if you receive any benefits, you cannot have money saved you can have no more I think than $2,000 liquidated funds are funds that you can access in your accounts at any time. So you need to be aware of some of those things you need it most all states have adopted the ABLE account. In Georgia it's called Stable account. And that's a way that parents can put money away that their their children either earned or they've gotten from another source. They can put it in this account without any effect on their social security. The drawback to a stable account or to enable account is that on the the SES of the beneficiary, the money reverts back to the state to pay back any funds

Dr. Regina Koepp 24:57
And what is a trust?

Lois Shingler 24:59
A trust is an a mechanism that set up that we'll see if I can explain this easily. What it does is it holds money property, some something physical or financial in a way that will benefit a certain person or certain people under certain conditions or certain terms. For example, a special needs trust usually comes into play only after the disease of the of the parent or the person who has funded it. There's some trusts that only come into play at certain ages of individuals or under certain circumstances, special needs trust will take into consideration potential benefits and waivers that people will get as they get older people with disabilities, and it will appoint individuals to manage that trust and to and to make sure that that the money is spent appropriately. So it's something that I couldn't set up on my own most, it really takes an enormous amount of training and understanding. And it's sort of like tax law, the laws change. And so you really need to know what you're doing. And for that, for that feeling of assurance that after you're gone, you know, these things will be taken care of, you really need to have somebody who knows what they're doing handle that. So that that would be my, my first real, strong recommendation, look into setting up a trust, I'd look into figuring out who's going to manage it and who's going to be responsible.

Dr. Regina Koepp 26:38
As you are entering your older adulthood and preparing for your older adulthood, you're also preparing for Paul's middle age and older adulthood as well. You're anticipating what will happen when you're no longer able to care for him. You're sharing, there are some signs you have less energy, you have less inclination to sit outside for a couple of hours while he plays tennis. There's driving at night, there's the transportation, so you're imagining and planning for where will Paul live? How will his funds be protected. And so setting up a special needs trust. Who will help him navigate these resources and living and financial needs. So identifying someone in your family or looking at a microboard or some other advocacy organizations in your state or near you to begin this search before you need it. And before it becomes a crisis or an immediate need. So you can be very thoughtful about how you plan for these resources. Do I have that right?

Lois Shingler 27:52
You do. That's a very good summary. That's exactly right. I add to that transportation, you have to set up mechanisms for transportation,

A man on his deathbed who feared for his son who was living with Schizophrenia.

Dr. Regina Koepp 28:00
housing, finances, transportation, and who... what trusted person? And if not a known person, a trustworthy person, and how do you go about finding them and you're sharing microboards might be a way to do that. This, this discussion is so relevant to me. Early in my training and working with older adults, I worked I trained on a hospice unit at the Palo Alto Veteran's Health Administration at the Palo Alto VA. And one of the people I was working with who was at the end of his life, he was on his deathbed literally, would share with me that he had an adult son who had schizophrenia, and the adult son would come in and out of homelessness, depending on you know, many, many mental health conditions are episodic in nature, maybe the person will maintain some medication management for a time and have stability, and then maybe go off medications and become unstable. So you would, the adult child would go in and out of homelessness. And during the time that my patient was dying, his son with schizophrenia, who was a middle aged person was stable, and living in housing that was stable. And the patient who was dying, my patient who was dying was so worried about what would happen to his son, and just, you know, how tragic the homelessness would be for his son with schizophrenia, how dangerous it would be, and then going into the adult sons own aging process, right. Like, and, and I just, I honestly as a young trainee, right, I was in graduate school, I was in my early 30s. I mean, I was at a loss. I don't I didn't know. Thankfully now. I've had a lot more exposure and experience. And it's still I don't it's, I don't know, everything answered talking with you and really hearing, you know, you have you have a real insight one because you're the mother of Paul, who's a typical and living with an autism spectrum disorder. And to because you're an attorney and you help families plan for these sorts of things, you know, and so you know what questions to ask and what to look for, and how to plan and prepare. And even if you yourself can't set up a trust, you know, that a trust needs to be set up, and you can find somebody. And so your insights are so important. So you're preparing for all of the, the basic needs, right? Housing, transportation, finances, who will, who will be the steward of all of this, these resources, and making sure your needs are met. And then there's the other side, which is the emotional side. And this is a side that is... other people can't fill those emotional needs as well. It's like, what will happen to my son, when I'm no, like, I am no longer here, because my son has been so reliant... I'm the one he trusts, I'm the one he can tolerate being in the same room with, I'm the one who can soothe him, I'm the one who can... I know that the mechanisms that will get him persuaded to do this other thing. And it's so terrifying- for the person who I was working with who was dying; I'm curious about how it is for you. I would be so scared, who will love my person as much as I love my person. And I wonder if you would share a bit about that.

Lois shares the emotional angst of planning

Lois Shingler 31:50
Yeah, if you if you take a look at that, multiply your feelings by millions. You know, and particularly right now, when you think about right now, during the pandemic, how many people who were hospitalized who had, you know, special needs adult children, or adult special needs children who were hospitalized and didn't understand what was going on. So when you think of the mental health issues, it's just, you know, triple any possible number that that you can think of in you're probably going to get close? It's it's enormous. And I mean, I think your experience is not uncommon. You know, I know of one situation in which there was a family member who was taking care of an adult special needs. Yeah, man, I believe in New York. And that individual died. And there were no relatives close by. So imagine what happens this is a an adult, who suddenly his only relatives are here in Georgia, and they've never lived with them don't know him don't understand what's going on. And that specialty individuals never been here and all of their contacts, things they're familiar with, we're in New York, and yet he couldn't continue to live there. So you know, when your listeners are thinking about it, and thinking about some of the problems, you just don't anticipate, it's extremely stressful. It's extremely nerve racking, you know, we all worry about our kids, what's going to happen, you know, even those who are neurotypical, but that's why setting something up, you do the best you can.

Lois Shingler 33:35
But almost everybody, I'll bet you, those who are listening to this can can relate to this every once in a while, when I pass somebody on the street, when I'm driving, and they're holding up their signs, if I'm anywhere close that, you know, I have a little, you know, $1 bills folded in my car, and I'll hand it in, because I always think there but for the grace of God is my son. Yeah. And I will bet you a large number of those listening right now can relate to that. Yeah, just to look at something like that and think, how can I keep that from happening? And, you know, the, I think that you would find it just as frustrating today as you did, then, because there are not many answers. There just are not many answers. And the more you deal with these issues, I mean, I often wonder, what do people do, who don't have a parent who understands a little bit about advocacy, who can read regulations, who knows how to file an appeal? You know, I've just filed a number of appeals on with regard to some care that my son received. You know, if you don't know how to do that you don't understand how to do that you don't understand. What do you do if you get a notice that your child has been overpaid and you and you need to refund all of this money? What do you do if you don't have somebody Who can speak for you? And who knows how to at least make those phone calls? It's a huge problem

Dr. Regina Koepp 35:06
And will not exploit you. I mean, that's the other risk is the risk of exploitation with these resources. So you're overpaid. So the person managing takes a little I cuz aren't I caring too and

Lois Shingler 35:19
Crazy, it's just crazy. You know, one of the biggest problems I think, from you know, the pandemic is that because so many agencies are short staffed. If you try if you get a notice from social security that over the last 10 years, they've miscalculated your benefit, and you owe 1000s of dollars. I know somebody who just received a notice that they owe $50,000. If you don't know how to deal with that, if you don't have somebody you can call and say, What do I do? You know, I don't know, I don't know what the solution is, I don't know what what will happen to those folks. And just just imagine getting that letter and imagine that kind of panic. So you know, these are, these are issues that are just beginning, you know, that the number of people, it's interesting that I had those figures that back in 1931, the average life expectancy for somebody with developmental disabilities was 22. And now it's 70. And it's, you know, we've made enormous strides and how we care for people, but the, you know, the information that is out there dealing with various, you know, neurological or physical disabilities, you know, how we treat them, people live longer, which is wonderful, but our services haven't keep pace. And we're just beginning to have this conversation, you know, now, what do we do? And whose responsibility is it? And how do we care for everybody? And how do we care for ourselves, you know, if we don't take care of ourselves, you know, so many people will say, this is one of the mantras of, of people, parents, with children with disabilities, if you don't take care of yourself, you can't take care of your child. It's so true with parents with with kids who don't have any particular problems, kids who are gifted, if you don't take care of yourself, you can't take care of your child. And you know, the services just aren't always there. And people aren't aware of them. So, you know, I wish I had the answers. They're not many answers.

Lois describes her plans for Paul in the future

Dr. Regina Koepp 37:25
Yeah. But thankfully, there are people like you who are advocating for Peter and Paul's place. Now tell us the plan for is the plan for Peter and Paul, then. So you do these weekend when there's not the pandemic, you they have a condo Peter and Paul, who are friends have a condo. They stay with you during the week, then on the weekend, they go and stay in the condo is the plan to help them live in the condo full time.

Lois Shingler 37:57
Yeah, I mean, that's the eventual plan was to have them live independently with support, and both of them need almost around the clock support. So the idea is to live independently, the support, that's why residential community is really what I'd like to see happen so that that Peter can go next door to see a friend and watch again, or they can have the same kind of social interaction that we have in our neighborhoods. So more than just the condo which is fairly isolated, they need to have something that's that is more inclusive. And that's the problem with group homes. So many group homes are isolated and there needs to be something that helps bring people together. So the plan is to gradually move them into that space and eventually a different space for most of them most of the week, if not all of it and to have them visit here rather than visit at the condo. And that requires setting up caregivers and that requires and if you do your own if you know under the now waiver, you are your own and that comp waiver rather the comp comprehensive waiver. You are your own employer, you hire your caregivers you hire, you know you find your own transportation. So those are things that unimpeded impulse plays, but we really want to do is help train caregivers to help find options like transportation, to provide move, we want to centered around the arts to get people together to do for drama and music and arts to have spaces for therapists to come in and use a space or you know, a place that can be a gathering place and a resource center that will build to a bad bite first and then the residential area once you start to build build your community then you can start thinking about building a residential area.

Dr. Regina Koepp 39:49
Start the conversation start the planning.

Lois Shingler 39:51

Dr. Regina Koepp 39:52
Planning takes a long time.

Lois Shingler 39:53
It does.

Dr. Regina Koepp 39:55
Are all of your plans in place, Lois?

Lois Shingler 39:58
No, they change daily. It's like, you know, when we first started Peter and Paul's Place, the whole idea was just to do like a resource center so people could get information. And then the internet, I mean, this was 40 years ago, the internet has changed that we don't, that's not so important anymore. Our plans change. I mean, we, we were, we had a goal with our, our two young men, they were spending long weekends at the condo, half to twice a month, which was pretty good. And we were going to try to move that forward, and then the pandemic hit. So then suddenly, we have a whole new set of issues, you know, jobs that that, you know, Paul held, or, or people that Paul knows, held, were eliminated, you know, they're, they're generally the, the lower paying less, you know, less technical jobs, and they were eliminated. And so then you're now looking at, okay, so, you know, two steps forward, and three back. Alright, now I'm looking for a different job and a different job training situation, or I'm looking at, you know, transportation, my son was able to take Lyft back and forth, and I can't do that anymore. So now, you know, how do you provide transportation, so it changes daily, and I think you'll find many of my listeners, your listeners will relate to this is that you don't get large things done. Because every day something small happens, you know, you know, with the zipper on his coat doesn't work, or you get a letter from Social Security asking you to produce all of your job, your pay stubs and job information for the last five years, you know, it, you take two steps forward and three steps back, but you have to keep trying. So our plans change, change daily, you know, they just don't know. I mean, Paul's developed some physical difficulties, you know, that you have to deal with it. And so they changed a lot. And it can be very, you know, we talk about the mental health of the caregivers. I mean, it gets very overwhelming when you're dealing with your own medical situation. And all of a sudden, you've now got, you know, something to deal with, with, with your your family member. So it's a, you know, it's difficult, it's difficult, but there are others out there who are trying to find the same answers. You just have to just keep trying.

Lois shares her secret to managing her mental health

Dr. Regina Koepp 42:31
Yeah, and build a community around you of people experiencing similar things. So you can share resources and experiences. Your resource list on your website, is one of those mechanisms. And just to summarize one more time, start planning early, that you plan for how finances will be managed, potentially with a trust that you plan for housing. Where will your loved one live. That you plan for transportation. How will they get around, that you plan for. Who will be the steward of these resources. And the potentially conservator or guardian or both. Or? And so does that person know your loved one? If not, is that person trustworthy? How do you know? And so getting all of the ducks in a row, and then maintaining your own mental health in the process. Because it's not the same as caring for a typical child, I will say, I, having worked with families who have older adults who have typical adult children versus a typical adult children, it is not the same thing. It's not the same level of stress, and why I think it's so important that we're having this conversation today, because there are a lot of barriers in place for families with non typical adult children. And the resources and the recommendations that you have are essential. And to your point about mental health, that that weighs heavily on the shoulders of older adult caregivers. And there's the emotional toll of who will care the same, the same level of love and attachment and care for my non typical loved one who will see them, that's the other piece. I would worry, they're only going to see the condition they might not see my person. Do you worry about that Lois? Do you have that fear?

Lois Shingler 44:42
Of course. Yeah, of course. And of course.

Dr. Regina Koepp 44:46
How do you work through that yourself?

Lois Shingler 44:48
I mean, it's it's very difficult. I think that the thing that I found over the years that is the most helpful is that a community of friends who have children, who are now adults who you know are in different stages, Live who have lived through some of these things, and, you know, just getting together with those folks and sharing stories and sharing resources, it adds a level of humor, sometimes, you know, the things we go through are really funny to us. And sometimes just knowing that there's, you know, somebody out there who knows things, and there's so much, there are little bits of information floating around in this universe. And you know, you don't always know where to where to find those, which ones to grab. So I, I would say if you, if you are a parent, even as a young child, develop your community resources, get Find yourself a group of parents, who are, you know, living the same life you are, and share your resources and share your stories. You know, share your mental health providers, if you believe that you see that really understands that will get you through a lot. Find yourself a community that can support you and can share some of your burdens.

Dr. Regina Koepp 46:03
Yeah, that's excellent advice. Now, tell us tell us where people can learn more about Peter and Paul's place. What's the website?

Learn more about Peter and Paul's place

Lois Shingler 46:12
it's It is being we have a wonderful web designer who is in the final steps of redesigning the website, but it's still it's still up so you can get all the information resources that are there, some of those resources will be useful to people who are in different states or even different countries. So, you know, that give you an idea of kind of where to go and what to look for and what's out there. That's where to start. And I'm hoping that, you know, we are we are, we had, we had just planned our big first fundraising activity when the pandemic hit. So we're, we're now starting to starting to regroup and we have to be able to do some fundraising, we you know, if you if anyone's looking for some place to donate, to to serve this community, that's a good place to start. Because our next step is to acquire a community center, which was we can start to gather again, we can start to teach caregivers and have our classes and bring people together. So develop a residential community and they can always also you can connect, you know, connect with me, I think my, my email is on the, on my bio, and I'm always happy to talk to people, wherever.

Dr. Regina Koepp 47:38
Well, thank you so much for joining us today. I'll link to all of these resources on the show notes

Lois Shingler 47:44
Thank you for shining some light on this particular problem. I really appreciate that. And, yeah, wish you all the best and hope that there's somebody out there as a lot smarter than I am or can figure this all out and share it because it takes it takes a team it takes it takes a village.

Lois was struck by lightening at 10 years old

Lois Shingler 48:07
I was struck by lightning when I was 11. Literally, I was crossing the street with my mother on the way to the Council on Aging in Nashville, Tennessee. I was at maybe 10 and it the lightning hit right near us and burned my umbrella. And so I blame everything on that. I have this effect on machines.

Dr. Regina Koepp 48:28
Oh my gosh, that's fascinating. You're the first person I've met has been struck by lightning.

Lois Shingler 48:32
Fortunately, it didn't strike me directly or I would have died but but it hit close enough to actually...

Dr. Regina Koepp 48:38
What happened to your hand on the umbrella?

Lois Shingler 48:41
It was numb for a while. I wish I wish I could remember it more clearly. But I just remember having having the sensation in my arm and part of my body. I think I don't really remember.

Dr. Regina Koepp 48:52

That's all for today. Now it's your turn. All you have to do is subscribe, leave a review and share this episode with others so that they can be part of the conversation too. One last thing, a special thanks to Jhazzmyn Joiner, our psychology of aging podcast intern, for all you do. Lots of love to you and your family. Bye for now.

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