Special Needs Adults With Disabilities – The Caring Generation®
The Caring Generation® – Episode 36 April 29, 2020, On this caregiver radio program Pamela D. Wilson, caregiving expert, talks about caring for Special Needs Adults with Disabilities. Guest, Dr. Temple Grandin shares tips to help children with autism succeed at home and at work.
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Special Needs Adults With Disabilities Radio Show Transcript
00:04 Announcer: Caregiving can sometimes feel like an impossible struggle. Caregivers may be torn between taking care of loved ones and trying to maintain balance in life. The good news is that it doesn’t have to be that way. The Caring Generation with host Pamela D. Wilson is here to focus on the conversation of caring. You’re not alone. In fact, you’re in exactly the right place to share stories, and learn tips and resources to help you and your loved ones. So now, please welcome the host of The Caring Generation, Pamela D. Wilson.
00:48 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert. I’m your host. You’re listening to The Caring Generation radio program coming to you live from the BBM Global Network Channel 100 and TuneIn Radio. The Caring Generation focuses on conversations about health, well-being, caring for ourselves, and loved ones all tied together with humor and laughter that are essential to being a caregiver. Tips for caregivers and aging adults are on my website, www.PamelaDWilson.com, and in my caregiving blog, it is called The Caring for Aging Parents Blog. I’m excited. Our topic for this radio show is special needs adults, adults with disabilities. Do you ever wonder what happens to children who are born with special needs when they become special needs adults? How do parents care for adults with disabilities? What happens to special needs adults as they age? Can special needs adults work? Can adults with disabilities live alone? And how do special needs adults fit into society? Then what about sex, having children, and marriage?
01:57 Pamela D. Wilson: My guest for this program is the amazing Dr. Temple Grandin. The interview will inspire you and give you hope about ways to support children with autism and other disabilities. Dr. Grandin is a past member of the board of directors of the Autism Society of America. She lectures and teaches about her experience with autism. She is also a very accomplished professor of Animal Science at Colorado State University, and a pioneer in improving the handling and welfare of farm animals. Her education includes a Bachelor of Arts at Franklin Pierce College, a Master’s in Animal Science at Arizona State University, and a Ph.D. in Animal Science from the University of Illinois. Dr. Grandin will join us in the next part of this show. Let’s return to our conversation about special needs adults with disabilities. I want to begin with information about special needs adults for our caregivers who are listening who may not be familiar. Then in the second half of the show, we will talk about what happens when special needs children become adults with disabilities, and how parents manage through a variety of life situations when they are The Power of Attorney or when they are a Court Appointed Guardian. I’m tongue-twisted tonight.
03:21 Pamela D. Wilson: My expertise in this area is from being a court-appointed guardian, and a Power of Attorney for the elderly and special needs adults. I was in the role that many parents find themselves when they are in a legal guardian position for special needs adults. It’s not easy. It can be very complicated. The system sometimes questions parents about the care that they provide to their children. Some parents should be questioned because they may not be providing adequate care, but other parents who are doing an amazing job are persecuted. And I know that persecuted is a strong word, but if you are listening and you’re a parent for special needs adults, you might know what I’m talking about. Human service organizations can sometimes victimize parents. I know this because, as a court-appointed guardian, I had my motives questioned many times by organizations with staff who called themselves advocates. In some cases, I legally had to prove that it was the human service organization staff and their advocates or other adults with disabilities under their supervision who were emotionally or financially taking advantage of my client, who was the special needs adult.
04:37 Pamela D. Wilson: Situations that parents would never dream of happen. I do want to qualify this and say that it does depend on the degree of the disability. Some special needs adults can live relatively independently. Others require a great deal of care and supervision provided by parents, and sometimes through the involvement and oversight of human service organizations. Let’s start with the background and the basics of children who become special needs adults. Special needs adults are children with mental, emotional, physical, or learning disabilities who need help with communication, movement, self-care, decision-making. Some of the diagnoses that you might hear that are associated with adults with disabilities include autism, ADHD, cerebral palsy, Down Syndrome, epilepsy, a traumatic brain injury, or any brain injury. And then, we have visual or hearing disabilities, reading, learning, and intellectual disabilities, speech and language impairments, and emotional disturbances. Which is why it’s difficult for elderly parents to be caregivers.
05:47 Pamela D. Wilson: Special needs are usually identified at birth or in the first few years of life, but they also can be diagnosed later between the ages of six to 17 as children get into school, and they are working and struggling to keep up. They can’t keep up with their peers, and parents notice that something is not right. It’s common for parents of special needs children to experience a lot of emotions, just like regular caregivers. Denial, guilt, anger, sadness, anxiety, and fear, and eventually, acceptance and hope. Parents can be in denial, or sometimes they can blame themselves because they think they did something to cause the disability, which usually is not the case. Being a good parent and worrying about how others will treat their children is another concern. In 1975, Congress enacted the Education for All Handicapped Children Act, it’s Public Law 94-142, to support states in protecting the rights and meeting the needs of infants, toddlers, children, and youth with disabilities. That law today is known as IDEA, the Individuals with Disabilities Education Act.
06:54 Pamela D. Wilson: Children who are screened and confirmed to have a disability are assigned a Service Coordinator, and an IFSP, which means Individualized Family Service Plan. There are a lot of acronyms when it comes to this type of support. The support provided relates to education, health, medical treatment, and daily living skills for mental, emotional, physical, learning, and other types of disabilities. Statistics from the National Survey of Children with Special Healthcare Needs confirms that 12.8% of children under age 18 have special needs. Children with special needs are present in 20% of households. So you probably know someone who has a special needs child. Special needs children have average lifespans. They grow into being adults. Many of them are very, very successful with the help and support of their elderly parents. Up next, Dr. Temple Grandin joins us to share her story of being diagnosed with autism at the age of two, and she was unable to speak. She offers hope, inspiration, and advice to help special needs children and adults succeed in life and work. She’s going to have some great advice for parents who are caregivers.
08:07 Pamela D. Wilson: She is well-published. She has published several hundred industry publications, book chapters, technical papers on her lifelong career specialty of animal handling and animal welfare. And she is a professor at Colorado State University. You can follow and like The Caring Generation radio show on my website, which is www.PamelaDWilson.com. On there, you’ll find my caregiving blog called Caring for Aging Parents blog, all the podcasts of these radio shows. I have a caregiving library on there for family caregivers, but also for professional caregivers. A lot of helpful articles are there. This is Pamela D. Wilson on The Caring Generation You’re with me live on the BBM Global Network Channel 100 and TuneIn Radio. Stay with me. We’ll be right back.
11:16 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert. I’m your host. You’re listening to The Caring Generation, coming to you live from the BBM Global Network, Channel 100, and TuneIn Radio. With us is Dr. Temple Grandin, professor of Animal Science at Colorado State University, a pioneer in animal welfare and a past member on the board of directors of the Autism Society of America. Dr. Grandin, thank you for joining us.
11:40 Dr. Temple Grandin: It’s really good to be here.
11:42 Pamela D. Wilson: What advice do you have for parents who might tend to shelter their children. Parents who may not want to take them out in public, because they’re a little overprotective?
11:54 Dr. Temple Grandin: Well, my mother had a really good instinct on how to stretch me. When I was a little kid, I had no speech till age four, got into really good speech therapy. But she expected me to learn how to eat properly, sit at the table, learn how to take turns at games. You have to stretch, just slightly outside the comfort zone. You don’t throw them in the deep end of the pool. I like kind of visual analogies. If you don’t stretch them, they just don’t develop, and there’s a tendency to overprotect them. I remember one mom of a really smart teenage kid that was labeled with autism. Actually a very good student in school, and he had never shopped. He hadn’t learned any life skills. This is where I see a major issue, is not teaching enough practical skills, like shopping and bank accounts.
12:44 Pamela D. Wilson: That makes a lot of difference. So I’ve heard you say, I’ve watched a lot of your videos that parents have to work with the weaknesses and the strength of children. But how do parents know what is a strength and what is the weakness and what they should focus on?
12:57 Dr. Temple Grandin: Well, when I was in third grade, it became very obvious that I had trouble with reading. That was a weakness. And mother taught me with phonics. First thing you do is you start with a book that’s worth reading. And she’d read out loud, get to a really fun, interesting part and then stop and have me sound out a few words. That was a weakness. But she also recognized my ability in art, and that was always encouraged. And I had a tendency to just draw the same horse head over and over again. And she said, “Well, let’s draw the stable. Let’s say draw the entire horse.” You want to take that art skill and broaden it, so it’s not so fixated.
13:36 Pamela D. Wilson: So it sounds like your mom was amazing. Your mom worked a lot with you. So, let’s talk about school. You have the Temple Grandin School. Is there any type of way to decide whether a child should go to a specialized school with other people with disabilities, or if they should just go into grade school and school with everybody else?
13:55 Dr. Temple Grandin: Actually, the Temple Grandin School isn’t my school. It’s named after me, and I’ve worked with them. I just want to straighten that out. I went to a small, regular elementary school. And I want to see kids mainstreamed as much as possible. There are some older kids, and I was one of them, where regular school didn’t work for me. High school was a disaster of bullying and teasing. But then there will be another kid that will go to that big high school and get involved with band, or theatre or some other thing, and it will work just fine. In fact, when I was out in the construction sites in the ’80s and early ’90s, we were working on installing equipment in these big meatpacking plants. I’m going to estimate that 20% of the high-end skilled tradespeople, designers, welders, who build complicated equipment, were either autistic, ADHD, or dyslexic. And I’m saying that absolutely serious. And that’s because we had skilled trades in the class. And the worst thing schools ever did 20 years ago was taking out all those hands-on classes, and we’re actually losing skills. There’s things that we don’t make any more in food processing, and we have to import it from Europe now.
15:11 Pamela D. Wilson: And so do you think that some of those people that you met in the plants and everything, were they probably special needs kids that their parents didn’t even realize they had a disability, and they just grew up?
15:24 Dr. Temple Grandin: Well, they were just kind of poor students, but they excelled at something like welding. I know a guy who owns a large metal fabrication company, and he’s a stutterer. He was a horrible student. He took a welding class. He started making things and selling them, and now he owns a big company that makes fabricated metal products. And he’s just as autistic as he could be. And then, when I go to autism meetings, I’m running into grandparents that find out they are on the spectrum when the kids get diagnosed. But one of the problems you’ve got with autism since they changed the labels in 2013, is you’re going all the way from the Silicon Valley programmer, to somebody who can’t dress themselves and you’ve got the same name put on it. And people get kind of trapped in that.
16:14 Pamela D. Wilson: That is confusing. You have so much education. A bachelor’s degree, you’ve got a master’s degree, you’ve got your doctorate. Was all of the school easy for you?
16:23 Dr. Temple Grandin: Well, I had a terrible time with math. I was one of those kids who couldn’t do algebra, and I managed to get out of it. But I got out of it because, in ’67, it wasn’t a national-required class. And I’m concerned that an algebra requirement is screening the visual thinking kids like me out of something like a skilled trade or an art career, and I discussed this in my book, The Autistic Brain.
16:48 Dr. Temple Grandin: The book’s called The Autistic Brain by Temple Grandin and Richard Panek. And I discussed some of the science behind different ways that people think. There’s actually resource that supports that we need our visual thinkers. And we have a gigantic shortage right now with things like heating and air-conditioning, mechanics, welders, plumbing, electrical. Huge shortage. These jobs will never go away. They’ll have a job for life.
17:16 Pamela D. Wilson: Well, and I’m with you, I had a horrible time with algebra in high school. It was probably one of my worst classes ever. I totally understand that. We are coming up to a break and we will continue with Dr. Grandin and after this.
17:31 Pamela D. Wilson: We’re going to continue to talk about autism and going into the workplace and how to have children live independently. So stay with us. This podcast will be on the website in about a week in a replay, in case you have other family members that want to listen to it. This is Pamela D Wilson on The Caring Generation. You are with me live on the BBM Global Network Channel 100 and TuneIn radio. Stay with me. We’ll be right back after this break.
20:16 Pamela D. Wilson: This is Pamela D Wilson, caregiving expert. I’m your host, you’re listening to The Caring Generation radio program for caregivers and aging adults coming to you live from the BBM Global Network Channel 100 and TuneIn Radio. We’re back to continue our conversation with Dr. Temple Grandin. Dr. Grandin, let’s talk about the workplace, and how do supervisors train or communicate with these, I guess I would call them highly-skilled tradespeople when there’s this social skills gap that you talk about?
20:48 Dr. Temple Grandin: So one of the reasons why the grandfathers had jobs, is because, in the 50s and 60s, social skills were taught in a much more structured manner. So they learn to be business social. Now on working with people with autism in the workplace, you just need clear instructions on what you’re supposed to do. Now when social snafus are made. Explain, take them in private, explain what they did wrong. But I’ve been out to Silicon Valley, and half of those programmers are probably on the autism spectrum. I strongly recommend teaching a child how to work before they graduate from high school. Mother got me a sewing job when I was 15, and I went away to a boarding school where I ran a horse barn for three years. Very important to get job skills. And right now, churches are closed because we can’t have crowds, but for 11 and 12-year olds, a volunteer job at a church was an excellent choice because they’ve got to learn how to do a task outside the home on a schedule. And as soon as they get to be legal age, they need to get jobs and learn how to keep them.
21:50 Pamela D. Wilson: That is a great idea and leads to my next question. So, parents who are trying to transition children from they’re in school, they need to work, live independently, and then move out of the home. Is that, does it happen over a period of time, how does that, what’s the best way to make that happen?
22:07 Dr. Temple Grandin: One thing that helped me is I was away at a boarding school, so going away to college wasn’t such a big shock. But the thing I can’t emphasize enough is learning how to keep and hold a job before they graduate from high school. Otherwise, they do what service providers call jumping off the service cliff. Things work best when there’s a gradual transition between things. So you start, we don’t have paper routes anymore, but then we need to have a volunteer job, be it a substitute paper route, maybe pay them a little bit for that. I had an allowance when I was a child, so I learned what I could buy with 50 cents. I could buy five comics, but if I wanted a 69 cent airplane, I had to save for two weeks. That was an important thing I was learning in elementary school. We learn about money. Those are easy things to teach. And again, I want to emphasize; autism has a huge range from brilliant scientists and artists. And the thing I want to ask is, what would happen to someone like Michelangelo today? He was a 6th-grade dropout. Where would Michelangelo be in today’s school system? That’s very well-documented except they just said at age 12, he quit school. He did not want to learn how to write business documents in Latin.
23:26 Pamela D. Wilson: That’s amazing.
23:27 Dr. Temple Grandin: I want people to think about that. Jane Goodall did her famous work on a two-year secretarial degree.
23:36 Pamela D. Wilson: Was Jane Goodall autistic?
23:39 Dr. Temple Grandin: I’m not going to say she’s autistic, I’m going to say that she did her famous work with a two-year secretarial degree. They call it a community college degree in secretarial science.
23:48 Pamela D. Wilson: That’s amazing. So for parents…
23:50 Dr. Temple Grandin: Would that be possible today? I’m only going to talk about stuff that’s absolutely documented.
23:55 Pamela D. Wilson: Yes, so, what recommendations would you give then? So for parents who have children on the other end, where they’re struggling in school, and they have to push them to go work, and they may not have the abilities to do that, how would you talk to those parents to say, don’t give up, keep trying?
24:14 Dr. Temple Grandin: I’m going to have to find out what the child is capable of doing. Is the child verbal? Can the child dress himself? I have to ask a whole lot of questions. There’s a tendency, especially with the autism-label to overgeneralize because it’s such a broad label going from very, very severely disabled and not being able to dress themselves to somebody who ought to be programming computers. And the other problem you’ve got with some of the non-verbals is they actually have locked-in syndrome where they learn to type independently. They discussed problems with controlling movement with a sensory scrambling, and there are some good books to read. First-person accounts of non-verbal individuals who talk and type independently. My two favorites are Tito Mukhopadhyay. How Can I Talk If My Lips Don’t Move? It’s called, How Can I Talk If My Lips Don’t Move? And the other one is a sequel book to The Reason I Jump. It’s a book that Naoki wrote when he was an adult, and he talked about not being able to control movements.
25:23 Pamela D. Wilson: So it sounds to me like parents should never ever give up. It sounds like there’s always something that children can learn and should do if the parents are persistent enough.
25:33 Dr. Temple Grandin: You have to figure out what they can do. Stephen Hawking, right before he died, told the New York Times, concentrate on the things your disability doesn’t prevent you from doing well and he could do math in his head super well. Can do. Also, I’d have to ask the parents a lot of questions before I could recommend anything. I’m not going to recommend that somebody who can’t dress themselves get a job at a tech company.
26:00 Pamela D. Wilson: Right, right.
26:00 Dr. Temple Grandin: Unless, they could do some math in their head really well.
26:05 Pamela D. Wilson: Well, and we never know that. So, what keeps you going? You’re very passionate. You continue to speak. You continue to advocate, what keeps you going, what inspires you?
26:15 Dr. Temple Grandin: Well, work is kind of my life, and when I have a parent say to me that they went to one of my lectures, or they read one of my books on, I have a book for younger kids called The Way I See It. It’s my basic autism book its called The Way I See It, and a parent might say that one of my lectures or books helps their kid get out and get a job and be successful. That makes me happy.
26:39 Pamela D. Wilson: And do you find that the parents need as much support as the children to work through these challenges?
26:46 Dr. Temple Grandin: And then some parents, you see the problem with autism is you’ve got such a big range, from an honors student where nobody’s bothered to teach him how to shop to a non-verbal individual, very severe behavior problems where it’s impossible for the family to do a normal thing, like go to a movie or go out to dinner. And by the time I was five and six years old, we could do things like Sunday dinner at Granny’s and not have a, I was able to do it, but there might be another individual where that wouldn’t be possible.
27:20 Pamela D. Wilson: And you were on the board of the Autism Society, is that a good place for people to go to find out about sources of information and education?
27:29 Dr. Temple Grandin: I would recommend looking up online your local autism support group. It’s really good for parents to get together and talk to other parents. That’d be the first thing I’d recommend. And since this is broadcasting all over the country, you’re just going to have to look it up and see what is local that you could go to.
27:49 Pamela D. Wilson: Okay, that is a great, great advice. Dr. Grandin, I cannot thank you so much for joining us and for sharing your experience. I’m going to make sure that this gets out everywhere on social media. Up next, we’ll continue to talk about coordinating care and support for special needs adults. Follow me on social media, on Facebook, watch my videos, and share posts my Facebook page is PamelaDWilson.page. On Twitter, I am caregivingspeak, on Instagram WilsonPamelaD. This is Pamela D Wilson, your host. You’re listening to The Caring Generation live on the BBM Global Network, Channel 100, and TuneIn Radio. Stay with me, will be right back after this break.
30:49 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert. I’m your host. You’re listening to The Caring Generation radio program for caregivers and aging adults, coming to you live from the BBM Global Network, Channel 100, and TuneIn Radio. Let’s continue to talk about coordinating care and support for special needs adults, adult children with disabilities who do need more help. So not those on the end of the spectrum like Dr. Temple Grandin talked about who are amazing engineers, but children who are going to need lifetime care and support.
31:17 Pamela D. Wilson: And I’ll talk about these from two very different perspectives, one being the court-appointed guardian for adults with disabilities who need help making all the decisions, so healthcare, financial, living decisions. And the second perspective as a medical and financial power of attorney for adults with disabilities who need a little bit of support, a little bit of guidance, a little bit of support. Both of these situations are very different, but again, these are people who do need help. So let’s talk about the power of attorney situation first for special needs adults who are higher functioning.
31:53 Pamela D. Wilson: So, meaning that they can dress and change themselves, and go to the store, and do things like that, and they really have an opportunity to get out and work. The world of developmental disabilities, if you’re a caregiver, you know, has its own terminology, and there’s a lot of terms and definitions that relate to children and adults with disabilities. I’ll include a link in the show transcript, where you can search these terms and acronyms, but you’re likely to hear IDT, Inter-Disciplinary Team, CCB, which is Community Centered Board, IP, Individual Plan, and many others. So, becoming familiar with these terms, it can feel like learning a foreign language. As the parents of special needs adults, you’ve learned or are learning that communication skills are very important. Some adults with disabilities have special communication patterns, either verbally, behaviorally, or both. For example, one of my clients was not always honest, but sometimes if he didn’t want to get somebody in trouble, he wouldn’t give the whole story. So, if he shook my hand and said, “That’s a deal,” I knew that I could rely on the information that he provided, or I knew that he agreed to follow through and do something.
33:03 Pamela D. Wilson: Some special needs adults are particularly vulnerable to the influence of others. Being vulnerable happens more often when adults with disabilities look like adults because of their age, but their developmental level places them much lower. For example, I had clients who were 50 years old, who may have had a cognitive level of the age of six, or a client at age 30, who may have functioned at a level of age 12. And when I say cognitive level in both of these cases, I’m talking about educational levels related to math skills, reading skills, communication, interpersonal skills, ability to problem-solve, and IQ. It’s essential to realize that adults with disabilities who need more help are different in many aspects that relate to everyday functioning, the ability to learn, the ability to achieve in school, and social skills. Providing care and oversight means that parents have to use every skill at their disposal, as Dr. Grandin mentioned, and to spend time to focus on the strengths and develop plans to focus on those strengths and address the weaknesses. There are gaps for everybody, even people who don’t have disabilities. And some special needs adults can be harmed, or they can make poor decisions that have unintended consequences if they don’t have enough support.
34:25 Pamela D. Wilson: Let’s talk about the transition from school to employment. When children graduate from high school, by the way, some graduate and others drop out, they may continue on to college, and they may seek employment. Seeking employment places some adults with disabilities in an uncomfortable world. Many of my clients, depending on their level of functioning and ability, had difficulty adjusting. Special needs adults, my clients included, some of them became accustomed to not working to improve their skills or try to get a job, which Dr. Grandin mentioned is not the right way to go about this. But I had many clients who said, “Why should I do that? Why should I work? Why should I learn?” And it was because, by the time I got involved with them if they were 30, 40, or 50, their parents never talked to them about working, or going to school, or any of those possibilities. Their parents taught them to be accustomed to be taken care of, and so, it’s not easy.
35:22 Pamela D. Wilson: Working with professionals to create behavioral plans is helpful. My recommendation is, if you can, become associated with the office of Vocational Rehab, it’s VR. It’s a federal program to state program, that helps people with physical and mental disabilities get a job and keep a job. It’s best to become involved in that program in high school, like Dr. Grandin talked about so that you can look at all the options. Some special needs adults can attend the appointments. Others will need reminders and transportation. And another consideration, then, is the transition to going out in the community and living in the community. Some special needs adults that I worked with attended schools with their peers. Others were in mainstream classes. And many of my clients, by the time I got involved, we either got them into a group home or got them into a living situation, so that they could be more independent within the safety net of living with other special needs adults, or in the supervision of house staff.
36:22 Pamela D. Wilson: A lot of special needs adults continue to live with their parents. And there’s a downside to that because in some situations I became a successor when a parent died, and the child had been living in the home for a number of years, and that was a very, very hard adjustment. The reality is that one parent, you know we are all going to die, and then what? It’s better to prepare your children for that so that they can make the adjustment before you’re gone. So the question to ask is, “Who are you protecting if you’re not looking at helping your child to live independently? Your child, or yourself?” It can take time, it can take a lot of patience, days, weeks, months, but it’s definitely worth the effort. I’ve seen what happens when it doesn’t work out, and it’s very, very hard for that child.
37:12 Pamela D. Wilson: We are going to continue to talk about life transitions for special needs adults after this break. Whether you are that parent, who is the power of attorney, or a court-appointed guardian, we’ll talk about the challenges and ways to go about it. And again, seek local help, check out your local Autism Society, check out voc rehab, check out all of the programs that are available for special needs children. Because they are certainly out there, and it can feel like learning a foreign language to get into the system and learn the acronyms and all of the paperwork that you have to fill out, but I’ve known people who do it. One of my best friends has made amazing progress with a child that she has, who is working and really doing a great job in succeeding on her own. Please share The Caring Generation and my website, PamelaDWilson.com with other caregivers that you know. This is Pamela D. Wilson, caregiving expert. I’m your host. You’re with me on The Caring Generation live from the BBM Global Network Channel 100 and TuneIn radio. Stay with me. We’ll be right back.
40:30 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert. This is The Caring Generation coming to you live from the BBM Global Network Channel 100 and TuneIn Radio. In the last part, we talked about adults with disabilities who have the ability to graduate from high school and work themselves into the work world, and leave home and live independently in a group setting with peers or in other supportive living situations. Let’s talk about special needs adults who don’t have the ability to work. These were some of my clients. What type of support is available for adults with disabilities who need greater support from parents who might be designated as a court-appointed guardian? Consistency and routine are very important to help adults with disabilities remain physically and mentally active. There are local groups where you live who support adults with disabilities. In this situation, many of the parents investigate programs. You might be familiar with names like The Arc, the Developmental Disabilities Resource Center, Bethesda Lutheran communities, Housing Options, and Dungarvin. I worked with a lot of these organizations, and many of these programs work with the state Medicaid programs. You can contact your county Medicaid office for more information if you’re not already involved with them.
41:49 Pamela D. Wilson: You can also check with the National Conference of State Housing Agencies for information about affordable housing and HUD housing in your area. Their website is NCSHA.org. My recommendation when you are looking at agencies to work with you and your children—interview several agencies and make sure that you’re comfortable with their programs. Warning, there is no perfect program out there. Make sure that you are pleased with the staff who administer the program and that you feel that you can work with the program manager assigned to you. I say this because these are kind of the situations where managers at community boards or community agencies can sometimes feel they know more about your child than you do, and it’s unfortunate. Because these situations can become adversarial where that manager attempts to turn adults with disabilities against you, the parents. Triangulation happens in cases where special needs adults who are even age 40 or 50 who have a low IQ level and the care managers cause problems where they kind of trick these adults into saying that parents are abusive—really—and the children don’t even understand what the word abusive means.
43:05 Pamela D. Wilson: And I know because I’ve been there. So parents have to be very careful about vulnerable children with disabilities and making sure that they’re not manipulated by staff at community agencies or even other residents. There are a lot of good agencies out there. Just as there are some not so good ones. On the idea of community housing, community agencies work with host home contractors or providers. It’s up to you to interview these host home providers. Ask for references, go see the house, interview that provider, and ask the hard questions. How long have you been a provider? On average, how long do residents live in your home? Have you ever been cited for abuse? How often do you disagree with family members of those residents who live in your home? You want to know everything before making a decision. Some of the host home providers go above and beyond. They’re amazing. Some host providers have really good intentions. But they don’t have the patience to care for adults with disabilities. And removing your child from a host home—it can be emotionally distressing, but necessary. When I was a court-appointed guardian, I had to do this, and I helped my clients do this too—to remove their children from abusive host home situations that were later investigated.
44:18 Pamela D. Wilson: Some parents of adults with disabilities are guardians, and they don’t understand all of their legal responsibilities. There is definitely hope for that. But you have to realize, to some of these host home providers, your child is a paycheck. Some again, are amazing, others are not. I don’t want to make you hesitant to look into group home situations. But I do want you to be aware that not all community organizations are the same. Keep searching until you find one that you are very comfortable working with—verify the information, interview the providers. Think about whether you would want that person to take care of you. If not, it’s probably not the right person to care for your child with disabilities.
44:58 Pamela D. Wilson: Then, on the other hand, parents who have had children living with them in their home for many years, and they age, so they’re 60 years old, they’re 70 years old. Sometimes, a brother or a sister can take over the responsibility of caring for a sibling with disabilities. But sometimes they don’t realize the significant responsibility, and in time, that brother or sister may realize that they can’t continue to be that caregiver.
45:23 Pamela D. Wilson: It’s okay because there are good group homes out there. Sometimes as they age, the behaviors of adults with disabilities can be threatening, because sometimes some of these disabilities have a little bit of Alzheimer’s or dementia that are associated. As Dr. Grandin talked about, transitioning at a younger age is so much better, and you can do it over a span of time because the hard part is the consideration of who cares for special needs adults when parents pass away? And when brothers and sisters can’t take over that primary responsibility of being a caregiver—this is called family succession planning for care—and it’s where you can appoint professionals to serve as a financial power of attorney, a trustee, a court-appointed guardian. It’s never too early to think about having those backup plans or to create them because none of us want to think about the fact that we are going to die, and our children are going to live beyond us.
46:26 Pamela D. Wilson: I served for many parents for whom that happened, and they were very good situations. Because the parents planned for that type of care. If you establish a trust for your children, you can appoint a trustee and a trust protector, which is a good idea. The role of that trust protector is to provide oversight of the trustee and the operations of the trust. And so, in situations where children are disabled, and they need a lot of care oversight, you have somebody managing that money. But you also have another person who gets reporting, and who can make sure that everything is going okay. Because, as in all situations, sometimes there are people who may not spend the money according to your wishes. It’s always good to have somebody take a look at that, and you can contact what is called a special needs planning attorney for more information about trust and trust protectors, and how to set that up. It’s very important, and also the elder law and the probate attorneys are the ones who do the power of attorney documents and the guardianships.
47:26 Pamela D. Wilson: We are on our way to another break. When we return, we’ll talk about sex, having children, and marriage. Subjects that cause snags in the relationship, sometimes, between special needs adults and parents, when there is a significant difference in how the special needs adults want to integrate into society and live their lives, and when the parents have significant concerns about the children’s ability to do all of that. Next week our topic is helping elderly parents make decisions. We’ll talk about power of attorney. Visit my website, PamelaDWilson.com, for helpful information for caregivers and aging adults. I’m Pamela D. Wilson, your host. This is The Caring Generation live from the BBM Global Network Channel 100 and TuneIn Radio. Stay with me. We’ll be right back.
51:33 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert. I’m your host. This is The Caring Generation radio program for caregivers, and aging adults live on the BBM Global Network, Channel 100, and TuneIn Radio. We’re back to talk about sex, having children, and marriage between special needs adults. Research by Sobsey and Brewer confirms that women with learning disabilities are four to 10 times more likely to experience physical violence, sexual violence, and homicide from their spouses or sexual partners than women without learning disabilities. I can confirm this through my experience with the special needs adults that I helped. Let’s talk about this relative to having and raising children.
52:14 Pamela D. Wilson: So, special needs adults sometimes will get pregnant, and they will have their children adopted out. But those who choose not to place children for adoption—according to research and facts—have a very difficult task in learning how to care for and raise children because there is a difficulty in positive feedback and social skills. Sometimes parents are very direct to young children and not nurturing. Parents with learning disabilities sometimes have a high probability of having their children removed by Child Protective Services, placed in care, and then adopted.
52:53 Pamela D. Wilson: It’s not that special needs adults who have children intentionally harm their children; they just don’t know how to care for babies. And then we have the effect on the babies and children being raised by parents who aren’t empathetic. Don’t know how to motivate them. Don’t know how to give them positive communication skills. Parents who have special needs adults who want to have children should talk about the pros and cons of subjects like sex, having children, and marriage, even though they’re very uncomfortable subjects. Sometimes counseling and support systems can provide insights for special needs adults that may be seen as less biased than the opinions of parents. In situations where parents or the guardian—guardianship and family court cases can cross sometimes probate and family law—and that is challenging, because they have different guidelines in different circumstances. If you come to be in this situation, make sure that you choose probate and family law attorneys who have experience with your particular type of situation, whether it’s a pregnancy or a marriage, so that you are not throwing money down the drain.
54:00 Pamela D. Wilson: The client that I was guardian for actually had a family trust that she talked about with a male care staff. That male caregiver initiated a sexual relationship with her. Had her sign a marriage license and filed it without a ceremony. Fortunately, my client called me and told me that she got married. It took me 12 months to go through probate and family law court to have that marriage annulled. It was quite an ordeal. But as you can see, there are so many circumstances that come up when you are a parent of an adult with a disability. And the situations can be challenging but don’t give up. There are always solutions. You want to keep going, as Dr. Temple Grandin said, and work with your children. Work to help them learn. Work to help them learn how to work, to get out, and live in host home situations, if at all possible because this is the goal. Helping your children become as independent as possible, so that they can live after you are gone.
55:00 Pamela D. Wilson: Next week, we are going to talk about helping elderly parents make decisions. That will include discussions about how to get power of attorney for elderly parents when needed, if they have cognitive disabilities or if you are just that caregiver who is helping out day-to-day, and you see that they need a little bit more help. I thank you so much for being proactive and interested in caregiving, aging, health, and well-being. I thank Dr. Temple Grandin for joining us. She is an amazing individual. You can visit her website. It’s templegrandin.com. Please follow and share The Caring Generation radio show on my website, www.PamelaDWilson.com, listen to the podcasts. Thank you all for being the amazing caregivers that you are and the assistance you provide in caring for your families. I’m Pamela D. Wilson, caregiving expert, advocate, and speaker. Join me on The Caring Generation next Wednesday evening. Invite your family and friends to join us. God bless you, sleep well tonight. Have a fabulous day tomorrow and a great week until we are together again.
55:57 Announcer: Tune in each week for The Caring Generation with host Pamela D. Wilson. Come join the conversation and see how Pamela can provide solutions and peace of mind for everyone here on Pamela D. Wilson’s The Caring Generation.