Tom Pomerantz came back to provide more training in our agency. This time about the importance of helping adults with intellectual disabilities reach adult status. As a society, we still tend to think of adults with cognitive impairment as being child-like or having a mental age similar to that of children. He says this is absolutely untrue, and I see the evidence in my daily work that he is right.
As I listened to Dr. Pomerantz speak, I realized that I do a pretty good job of treating the adults I work with like adults. I thought of how far I have come over the many years of working with people with developmental disabilities. I used to call them 'honey', use nicknames they didn't ask for, talk in a sing-songy tone, buy them stuffed animals, color with them, do too much for them even though they were completely capable, and so much more. If a mistake could be made, I made it. But I'm doing great, now. I am conscious of engaging in adult interactions with the adults I support. I still do make mistakes, but less often. And the individuals benefit in that they are proud to be treated as adults, proud to have adult expectations, proud to have competence now that they are given the chance to be competent, and more highly respected by members of their community.
I am embarrassed to say there is one glaring exception to my successfully treating adults with intellectual disabilities as adults. I was incredibly aghast when I realized in the training session that I still treat my own 29-year-old daughter as if she were a child. I have all sorts of excuses and I am actually doing much better than I used to. She has corrected me on some of these so that I have learned over the years how she wants to be treated. If any of us use endearments or nicknames toward her, she lets us have it. Just recently, she was intermittently snapping at me for over an hour because I called her "dear."
She is reaching adult status despite me, though. She has made decisions on her own to trade in her Mickey Mouse stuffed character collection for Coca Cola memorabilia. She is selecting less cartoon t-shirts and going for sports teams, now. She has stopped coloring on her own and now prefers to draw and write. She's growing up, just slowly. I just have to get out of her way. She wanted a Toy Story bedroom set last year when I told her she could pick out what she wanted. So there it sits on her bed. I should have told her that adults select other things for their bedrooms. I will start to do that, now. I also told her she could get whatever Buffalo Bills collectible she wanted a few weeks ago. She picked out a stuffed bear and I let her. I should have told her adults would generally select something else. The day after the Pomerantz training, we went shopping together to trade in her Batman backpack and Superheros lunch bag for a more adult version. She selected solid blue adult versions for both and didn't mind at all. I used to think I would hurt her feelings or lower her self esteem if I corrected her choices. I am confident I can find a way to let her become an adult without making her feel bad about herself.
I don't even want to admit how many times I put her shoes on for her so that I can adjust her socks just right or how many times I load her toothbrush with toothpaste. Now that I am aware, I'll do better. As I sat beside her writing this, she asked me to get her a spoon. Before hopping up to get it, I stopped and told her adults usually get up and get their own things. She said, "Oh, ok." and got the spoon.
Tuesday, August 28, 2012
Saturday, August 25, 2012
Angels on Earth
Over the years I have heard several people refer to people with intellectual disabilities as angels on earth. I've even seen that glazed, upward, tears-in-the-eyes look when some people have said this. The other day, I heard it again. In this case, a trainer teaching about autism said she believes people with autism are 'special' and 'angels on earth'. Before I go on, let me assure you, my daughter is not an angel.
So, what's wrong with glorifying people with varying degrees of cognitive or neurological impairment as angels or guardians or special?
There is always an underlying message or belief with the words we use. I guess if we think they are angels, we could think they are better than the rest of us. That's not as bad as thinking they are less than the rest of us, which is more common, but it is still not equal. It sets them apart and that is not what they probably want. I've only ever seen them want to belong, not be set apart. What some people might be doing is trying to soothe their own feelings of pity or guilt by thinking of people with disabilities as angels. Considering them to be glorified beings gives us a palatable answer as to why some people have disabilities. Well, then we can think they have a special mission on earth. A mission to watch over us, help us be better humans, help us to become enlightened, and so on.
There's a danger to thinking that they are angels. If you have never heard of the "Pillow Angel" case, also known as "Ashley Treatment" be sure to do a quick online search. "Pillow Angel" is what some parents call their severely-disabled children because they stay on the pillow they were placed. It is meant to be an affectionate term yet they also call them "permanently unabled." These parents and some professionals erroneously believe that their children will mentally remain infants forever. Back in 2007, the parents of a young girl born with brain damage decided to have her undergo some treatments and operations to keep her small and unable to grow into puberty. It's called growth attenuation and involved removing her breast buds, performing a hysterectomy, and hormone therapy so she can't physically grow bigger. They reasoned that since she will always be an infant in mind, best to keep her an infant in body so that her caregivers will have an easier time caring for her and will have a better relationship with her because of it. They also reasoned that Ashley wouldn't have to experience the discomfort of menses, possible breast cancer, and bed sores in the future if she received this treatment.
When I think of this case, I think of the many people I support each day to live a full life. Some of them, like Ashley, can't really move a lot. But we don't keep them on a pillow all day or in bed - we transfer them easily by using a mechanical lift and help them into a wheelchair. Then we have them accompany us and talk with them about what we are doing so that they can be involved as much as possible. They go out and do volunteer work. Some of them can't move their hands in a controlled manner, so we ask them if we can help them and then we push the elevator button by putting our hand over theirs and guiding them. There tons of ways to help someone with the most severe disabilities to be involved in this awesome life. They don't have to stay on the pillow. And we don't have to condemn them to a life as an angel.
Angels in mythology and religion have had certain roles in our lives such as messengers or guardians. One important aspect of angels, though, is that they want to be human. And that's all that the individuals with intellectual disabilities want. They just want to be like everyone else.
One more point...sometimes people think that we staffers are angels on earth and special. Stop thinking that way right now. We are paid to do a job. We love our jobs and don't want another job. We get much satisfaction out of our work. Thinking of us as special is degrading to the people with disabilities whom we support, as if they are so challenging that only special people can do it.
So, what's wrong with glorifying people with varying degrees of cognitive or neurological impairment as angels or guardians or special?
There is always an underlying message or belief with the words we use. I guess if we think they are angels, we could think they are better than the rest of us. That's not as bad as thinking they are less than the rest of us, which is more common, but it is still not equal. It sets them apart and that is not what they probably want. I've only ever seen them want to belong, not be set apart. What some people might be doing is trying to soothe their own feelings of pity or guilt by thinking of people with disabilities as angels. Considering them to be glorified beings gives us a palatable answer as to why some people have disabilities. Well, then we can think they have a special mission on earth. A mission to watch over us, help us be better humans, help us to become enlightened, and so on.
There's a danger to thinking that they are angels. If you have never heard of the "Pillow Angel" case, also known as "Ashley Treatment" be sure to do a quick online search. "Pillow Angel" is what some parents call their severely-disabled children because they stay on the pillow they were placed. It is meant to be an affectionate term yet they also call them "permanently unabled." These parents and some professionals erroneously believe that their children will mentally remain infants forever. Back in 2007, the parents of a young girl born with brain damage decided to have her undergo some treatments and operations to keep her small and unable to grow into puberty. It's called growth attenuation and involved removing her breast buds, performing a hysterectomy, and hormone therapy so she can't physically grow bigger. They reasoned that since she will always be an infant in mind, best to keep her an infant in body so that her caregivers will have an easier time caring for her and will have a better relationship with her because of it. They also reasoned that Ashley wouldn't have to experience the discomfort of menses, possible breast cancer, and bed sores in the future if she received this treatment.
When I think of this case, I think of the many people I support each day to live a full life. Some of them, like Ashley, can't really move a lot. But we don't keep them on a pillow all day or in bed - we transfer them easily by using a mechanical lift and help them into a wheelchair. Then we have them accompany us and talk with them about what we are doing so that they can be involved as much as possible. They go out and do volunteer work. Some of them can't move their hands in a controlled manner, so we ask them if we can help them and then we push the elevator button by putting our hand over theirs and guiding them. There tons of ways to help someone with the most severe disabilities to be involved in this awesome life. They don't have to stay on the pillow. And we don't have to condemn them to a life as an angel.
Angels in mythology and religion have had certain roles in our lives such as messengers or guardians. One important aspect of angels, though, is that they want to be human. And that's all that the individuals with intellectual disabilities want. They just want to be like everyone else.
One more point...sometimes people think that we staffers are angels on earth and special. Stop thinking that way right now. We are paid to do a job. We love our jobs and don't want another job. We get much satisfaction out of our work. Thinking of us as special is degrading to the people with disabilities whom we support, as if they are so challenging that only special people can do it.
Thursday, August 23, 2012
Be Cool
What should you do if someone is emotionally out of control?
I regularly read a blog called Ido in Autismland. He's an articulate kid who lets the reader into his autistic world. He recently wrote of his experiences with teachers and others who try to help him during tough, emotional moments.
What it amounts to is you have to stay calm. If he or others are having what my autistic daughter fondly calls 'a meltdown,' you have to remain calm, not overreact, not scold, so that they can find their balance again. People are calmest when those around them are calm. If you show fear or anger or take an authoritarian approach, they are keenly tuned in to it, and they may experience fear and escalate. Ido says that this is part of his neurological make-up having to do with sensory overload and he just doesn't have it under control yet. He says it is most helpful to be taken to a quiet place where he can regain control. And he reminds us all to not be afraid if we see an autistic person having a meltdown. They do not want to hurt anyone.
I have seen many emotional outbursts over the years. Many call them 'temper tantrums' and think that people are engaged in them to get something they want. In the vast majority of cases, that's not it at all. They really are overwhelmed and truly are out of control. It is not purposeful, but instead, it is an involuntary reaction to what is going on around them.
If you want to help them, take a deep breath and calm your own emotional reaction, first. Then ask them how you can help them. If they can't answer and seem stuck, ask if you can bring them to somewhere with less stimulation - that quieter place that Ido talks about. Do this with compassion, not with a mind toward justice or punishment because someone is behaving badly. From my experience, they are already embarrassed as it is, and compassion and empathy are better approaches than chiding.
All humans have emotional issues at some point. It's a part of being human. Want to support your fellow human? Just be cool.
Tuesday, August 21, 2012
Motivation and Individuals with Intellectual Disability
I'm studying Maslow's Hierarchy of Needs in a class I'm taking. The idea is that certain human needs have to be met before the person can grow as a human. The needs one has to go through in order are:
Physiological
Safety and Security
Love and Belonging
Self-Esteem
Self-Actualization
Ideally, we humans would be motivated to go through all stages but apparently it is rare for someone to be self-actualized.
Not that I am going to do justice to this theory but....
We first need our physiological needs met before we can look for safety and security. This means we need food, water, air - things that assure we stay alive.
With those being met, we can look for safety and security - shelter, money, being free from harm and anxiety. Once we've got that we can look for...
Love and belonging - close friendships, sexual intimacy, loving family, and a general sense of belonging.
With those in place, we are motivated to look for esteem - being respected by others, making important contributions, confidence, and self-respect.
And then we can look for self-actualization - realizing our potential.
So why do I write of this when considering people with intellectual disabilities? Well, if Maslow's theory has any merit at all, we are missing the boat when we are working with people with developmental disabilities. We seem perfectly content and consider it a good day if we provided good food, warm clothes, and kept the individuals safe. Routinely, we do a nice job meeting the first two needs on the hierarchy (although we do have arguments from time to time as to how to implement those food and safety parameters). What about the other three, though? Love and belonging is tough. Some of them do feel a lack in their lives that they haven't married, had children, don't have close family, don't have physically intimate relationships, and don't feel they belong. Then for the need for esteem, they don't generally feel respected by others I don't think. How can they when they are so often told how to do things properly and corrected for how they are doing it? They don't often have opportunities to build their confidence or make contributions because we are so busy happily doing things for them. Which means they aren't even ready to realize their potential, much as that truly is our goal for them. Ooops, and look what I wrote: "our goal for them." What about their goals for them?
I'm just musing. As I studied this motivation theory with a mind toward equality for all, I wondered what it would take to have all humans regarded with the same outlook and to be encouraging those other needs for individuals with disabilities. Not just the basic needs. All of us belonging, respected, and reaching our potential.
Physiological
Safety and Security
Love and Belonging
Self-Esteem
Self-Actualization
Ideally, we humans would be motivated to go through all stages but apparently it is rare for someone to be self-actualized.
Not that I am going to do justice to this theory but....
We first need our physiological needs met before we can look for safety and security. This means we need food, water, air - things that assure we stay alive.
With those being met, we can look for safety and security - shelter, money, being free from harm and anxiety. Once we've got that we can look for...
Love and belonging - close friendships, sexual intimacy, loving family, and a general sense of belonging.
With those in place, we are motivated to look for esteem - being respected by others, making important contributions, confidence, and self-respect.
And then we can look for self-actualization - realizing our potential.
So why do I write of this when considering people with intellectual disabilities? Well, if Maslow's theory has any merit at all, we are missing the boat when we are working with people with developmental disabilities. We seem perfectly content and consider it a good day if we provided good food, warm clothes, and kept the individuals safe. Routinely, we do a nice job meeting the first two needs on the hierarchy (although we do have arguments from time to time as to how to implement those food and safety parameters). What about the other three, though? Love and belonging is tough. Some of them do feel a lack in their lives that they haven't married, had children, don't have close family, don't have physically intimate relationships, and don't feel they belong. Then for the need for esteem, they don't generally feel respected by others I don't think. How can they when they are so often told how to do things properly and corrected for how they are doing it? They don't often have opportunities to build their confidence or make contributions because we are so busy happily doing things for them. Which means they aren't even ready to realize their potential, much as that truly is our goal for them. Ooops, and look what I wrote: "our goal for them." What about their goals for them?
I'm just musing. As I studied this motivation theory with a mind toward equality for all, I wondered what it would take to have all humans regarded with the same outlook and to be encouraging those other needs for individuals with disabilities. Not just the basic needs. All of us belonging, respected, and reaching our potential.
Saturday, August 18, 2012
Be Here Now
Back in the 70's, Ram Dass wrote a trippy book called, Be Here Now. It is essentially a spiritual book on living in the moment rather than in the past or future. When I am at work and daydreaming of places I might like to be instead of working, I think of that book. To be successful and effective when working with others, we need to find a way to savor each moment with that other human being. Those moments matter to the person you are supporting. And they matter for you, too.
Some of us get a little down while we are working. We think how sad it is that someone has to use a wheelchair. Or how awful it must be for someone with an intellectual disability who can't control their emotions. Or how frustrating it must be for someone who can't communicate effectively with others or can't take care of their own personal needs. But we can't let ourselves think that way; it does not help them or you.
What we have to do instead is Be Here Now. Everything is ok the way it is. We have to realize that we can't change their particular situation. We can only change how we impact the time we spend with them. That means we can make that eight hours awesome. We don't even have to do anything spectacular. Just be mindful of each moment spent in the presence of another. Spend those moments fully with them. Really get to know and listen to them. Just doing their hair, or playing a board game with them can make their day. Joke around with them and don't take things so seriously. Ask them about things you don't know about them - their family, upbringing, things they love, what was their favorite part of the day, anything.See what they want to do with their life and help them to do it.
Some of us get a little down while we are working. We think how sad it is that someone has to use a wheelchair. Or how awful it must be for someone with an intellectual disability who can't control their emotions. Or how frustrating it must be for someone who can't communicate effectively with others or can't take care of their own personal needs. But we can't let ourselves think that way; it does not help them or you.
What we have to do instead is Be Here Now. Everything is ok the way it is. We have to realize that we can't change their particular situation. We can only change how we impact the time we spend with them. That means we can make that eight hours awesome. We don't even have to do anything spectacular. Just be mindful of each moment spent in the presence of another. Spend those moments fully with them. Really get to know and listen to them. Just doing their hair, or playing a board game with them can make their day. Joke around with them and don't take things so seriously. Ask them about things you don't know about them - their family, upbringing, things they love, what was their favorite part of the day, anything.See what they want to do with their life and help them to do it.
Tuesday, August 14, 2012
Be Easy On Each Other
I have come across a couple situations regarding the ethics of caring recently. When you are in the midst of issues that are important and there is no consesus, tempers can flare.
In the first situation, one elder gentleman with mild cognitive impairment is very sick. The staff love and care about this man very much and they are arguing with each other (and anyone who will listen) about how he should be cared for. While we know basically how he should be cared for because the care plans are written out, there are always gray areas. You can't cover everything in a book when you are working with humans. When the staff argue about this and many other situations not covered in "the book", little gets accomplished except for inconsistent care. The individual staff members have a hard time seeing that all the staff have this man's best interest at heart. The arguments get heated because everyone thinks that their way is truly the best and only way.
In the second situation, another person is also sick - an older woman with dementia and profound intellectual disability. Since recent medication reductions, she has been purposely hurting herself and yelling loudly. If she re-starts those psychoactive medications, she will be lethargic and unresponsive most of the day, sleeping through meals and activities that are important to her. If she doesn't re-start at least some of the medications, she will continue to be truly distressed most of her waking hours. Staff, clinicians, and medical personnel understandably debate the merits of either approach, at times with anger and frustration, because we haven't found that happy medium between agitation and sleeping for her. It's a quality of life issue.
We feel frustrated in these and other situations because the people we care about are hurting and we feel powerless to provide them what they seem to need. While we are waiting for the answers that may never come, we need to be as good to that individual as we can, and we need to be easy on each other. When the individuals we care about are hurting, the people around them hurt, too. Anger in these situations could be effectively replaced with understanding. Instead of anger toward your fellow team member, understand that that person also only wants what is best for that person, and start from there in working together to meet their needs.
In the first situation, one elder gentleman with mild cognitive impairment is very sick. The staff love and care about this man very much and they are arguing with each other (and anyone who will listen) about how he should be cared for. While we know basically how he should be cared for because the care plans are written out, there are always gray areas. You can't cover everything in a book when you are working with humans. When the staff argue about this and many other situations not covered in "the book", little gets accomplished except for inconsistent care. The individual staff members have a hard time seeing that all the staff have this man's best interest at heart. The arguments get heated because everyone thinks that their way is truly the best and only way.
In the second situation, another person is also sick - an older woman with dementia and profound intellectual disability. Since recent medication reductions, she has been purposely hurting herself and yelling loudly. If she re-starts those psychoactive medications, she will be lethargic and unresponsive most of the day, sleeping through meals and activities that are important to her. If she doesn't re-start at least some of the medications, she will continue to be truly distressed most of her waking hours. Staff, clinicians, and medical personnel understandably debate the merits of either approach, at times with anger and frustration, because we haven't found that happy medium between agitation and sleeping for her. It's a quality of life issue.
We feel frustrated in these and other situations because the people we care about are hurting and we feel powerless to provide them what they seem to need. While we are waiting for the answers that may never come, we need to be as good to that individual as we can, and we need to be easy on each other. When the individuals we care about are hurting, the people around them hurt, too. Anger in these situations could be effectively replaced with understanding. Instead of anger toward your fellow team member, understand that that person also only wants what is best for that person, and start from there in working together to meet their needs.
Saturday, August 11, 2012
Sweet Potato
Years ago, an older lady with mild intellectual disability living in one of the group homes started to have a difficult time getting out of bed. We thought she was in pain but she didn't tell us that. Maybe she was tired and didn't want to get up on our schedule. Maybe she didn't want to go to her day program anymore. We really didn't know and she did not tell us. We tried a few different approaches to help her since it really would not have been good for her to stay in bed all day. Nothing worked without a fight until one staffer found that if you called her "Sweet Potato" and talked to her in an overly sing-songy tone, she could be enticed out of bed.
We normally don't take this approach. It can be demeaning, infantilizing, and condescending to talk to adults with disabilities as if they are children. But it worked without an argument and without having to use physical prompts. So what should we have done? Well, she definitely seemed to feel loved, nurtured, and cared for with our new approach. If we didn't use the 'Sweet Potato' approach, we would have had on-going power struggles or had to use even worse approaches. Since we didn't know exactly why she wouldn't get out of bed, maybe her underlying need was that she wanted more love and affection and nurturing.
When I said that we normally don't take this approach, I meant most of us who work with individuals with developmental disabilities. However, there are numerous staff who choose to override this standard and go renegade. They are automatically armed with 'honey', pats on the head, and hand-holding. The majority of time, this is not because people said they wanted to be treated like children but because staff and members of society think of them as children.
There are so many people we support that enjoy us treating them like children. What if that is their preferred way of making a connection?
What's the harm if we take the 'Sweet Potato' approach automatically when it is not warranted or asked for? Well, we might be inadvertently reinforcing individuals with intellectual disabilities to enjoy being treated like children and then they will act like children. In other cases, some may become angry with being infantilized yet be unable to express this in words.
I can think of a few things we could do. We could have conversations with the adults we are working with and explain why we don't call them by gooey nicknames and pat them on the head and give them a smiley sticker for good behavior. (I know someone right now in his 30's that jumps up and down for a star if he comes out of the bathroom within a half hour.) We can reinforce adult behavior on their part with adult behavior on our part. We can educate and encourage families to engage in developmentally-appropriate conversations and behaviors with their maturing young person so that the coming generation of people with disabilities will enjoy being treated as adults more than as children. And we can find other ways to express affection and nurturing in our relationships with adults with disabilities and meet their needs much as we do with each other.
If the lady who wanted to stay in bed felt sufficiently admired and loved, perhaps we wouldn't have had to take the 'Sweet Potato' approach to motivate her out of bed. It is not the worst thing we could have done but it was not completely benign, either.
We normally don't take this approach. It can be demeaning, infantilizing, and condescending to talk to adults with disabilities as if they are children. But it worked without an argument and without having to use physical prompts. So what should we have done? Well, she definitely seemed to feel loved, nurtured, and cared for with our new approach. If we didn't use the 'Sweet Potato' approach, we would have had on-going power struggles or had to use even worse approaches. Since we didn't know exactly why she wouldn't get out of bed, maybe her underlying need was that she wanted more love and affection and nurturing.
When I said that we normally don't take this approach, I meant most of us who work with individuals with developmental disabilities. However, there are numerous staff who choose to override this standard and go renegade. They are automatically armed with 'honey', pats on the head, and hand-holding. The majority of time, this is not because people said they wanted to be treated like children but because staff and members of society think of them as children.
There are so many people we support that enjoy us treating them like children. What if that is their preferred way of making a connection?
What's the harm if we take the 'Sweet Potato' approach automatically when it is not warranted or asked for? Well, we might be inadvertently reinforcing individuals with intellectual disabilities to enjoy being treated like children and then they will act like children. In other cases, some may become angry with being infantilized yet be unable to express this in words.
I can think of a few things we could do. We could have conversations with the adults we are working with and explain why we don't call them by gooey nicknames and pat them on the head and give them a smiley sticker for good behavior. (I know someone right now in his 30's that jumps up and down for a star if he comes out of the bathroom within a half hour.) We can reinforce adult behavior on their part with adult behavior on our part. We can educate and encourage families to engage in developmentally-appropriate conversations and behaviors with their maturing young person so that the coming generation of people with disabilities will enjoy being treated as adults more than as children. And we can find other ways to express affection and nurturing in our relationships with adults with disabilities and meet their needs much as we do with each other.
If the lady who wanted to stay in bed felt sufficiently admired and loved, perhaps we wouldn't have had to take the 'Sweet Potato' approach to motivate her out of bed. It is not the worst thing we could have done but it was not completely benign, either.
Thursday, August 9, 2012
Only Connect
As in Howards End by E.M. Forster, we must connect with others in order to really understand and be of any help to them. In the book, the lack of connection with self and others creates division and apathy regarding class and gender. In our work with people with intellectual disabilities, the lack of connection between us (staff and individual, staff and staff, supervisor and staff) creates misunderstandings and ineffectiveness.
We tend to take a clinical and scientific approach to helping people with disabilities when what is really needed is a relationship. When the individual truly likes and trusts the staff and the staff in turn truly likes the individual they are supporting, the individual is motivated to learn, grow, communicate, and collaborate.
A man with profound intellectual disability at one of the group homes historically has had an extremely difficult time with medical procedures of any kind. Many times, depending on his mood, we can't bring him into the doctor's office and the doctor will come out to the vehicle. If we do bring him into the office, he might yell loudly the whole time, rummaging through the cupboards, restlessly pacing, then having us hold him down to complete the exam or procedure. Sometimes we give him a sedative before the procedure, which mostly does not prove effective. When he gets his toenails cut, the podiatrist comes to his house and we have to place him in a hold called three-person supine control until his nails are cut. We have tried many behavioral techniques and desensitization plans to help him to not have so much anxiety on appointments, mostly ineffective.
Over the past couple years, he has established a close relationship with a particular staffer. In between the tasks of daily living and chores, they also do many fun things together and the staffer goes out of his way to spend time with this fellow, not demanding anything of him except that they hang out, laugh, watch television together, play basketball. The staffer has worked with him several times a week, filing all his nails. We don't have to hold him down in these cases. He just sits on a chair with his feet up, no anxiety, smile on his face as the trusted staffer files and cuts his nails.
To connect, we have to go out of our way to really get to know the people we work with and for. When it seems like all the work is done at the group home or day program, that's another opportunity to find someone to make a connection with. Making connections is also the primary reason we provide opportunities to spend time in the community. We hope that the individuals will establish relationships with people not paid to be with them. We hope that they will find that they are important to someone and that someone benefits from their company.
Herb Lovett wrote, "Real behavior change comes from a relationship; the more serious the need for change, the more serious this relationship needs to be."
We tend to take a clinical and scientific approach to helping people with disabilities when what is really needed is a relationship. When the individual truly likes and trusts the staff and the staff in turn truly likes the individual they are supporting, the individual is motivated to learn, grow, communicate, and collaborate.
A man with profound intellectual disability at one of the group homes historically has had an extremely difficult time with medical procedures of any kind. Many times, depending on his mood, we can't bring him into the doctor's office and the doctor will come out to the vehicle. If we do bring him into the office, he might yell loudly the whole time, rummaging through the cupboards, restlessly pacing, then having us hold him down to complete the exam or procedure. Sometimes we give him a sedative before the procedure, which mostly does not prove effective. When he gets his toenails cut, the podiatrist comes to his house and we have to place him in a hold called three-person supine control until his nails are cut. We have tried many behavioral techniques and desensitization plans to help him to not have so much anxiety on appointments, mostly ineffective.
Over the past couple years, he has established a close relationship with a particular staffer. In between the tasks of daily living and chores, they also do many fun things together and the staffer goes out of his way to spend time with this fellow, not demanding anything of him except that they hang out, laugh, watch television together, play basketball. The staffer has worked with him several times a week, filing all his nails. We don't have to hold him down in these cases. He just sits on a chair with his feet up, no anxiety, smile on his face as the trusted staffer files and cuts his nails.
To connect, we have to go out of our way to really get to know the people we work with and for. When it seems like all the work is done at the group home or day program, that's another opportunity to find someone to make a connection with. Making connections is also the primary reason we provide opportunities to spend time in the community. We hope that the individuals will establish relationships with people not paid to be with them. We hope that they will find that they are important to someone and that someone benefits from their company.
Herb Lovett wrote, "Real behavior change comes from a relationship; the more serious the need for change, the more serious this relationship needs to be."
Tuesday, August 7, 2012
A Change of Heart and Mind
Tom Pomerantz came again to our agency to bring us some more of his ideas in how to support people with intellectual disabilities. At the same time, I am reading a book along the same lines - Learning to Listen: Positive Approaches and People with Difficult Behavior by Herbert Lovett. Both authors argue very effectively that we are looking at people with disabilities with a worldview that is incorrect. We think of them as children, incapable, and challenging when we should be thinking of them as people like the rest of us. And if they exhibit a behavior that is troublesome to themselves and others, it is not because they have a disability, it is because of the pervasiveness of how we treat them and further because of unmet needs based on the type of life they lead.
I wrote in Game-Changer http://www.blogger.com/blogger.g?blogID=4082941367652166326#editor/target=post;postID=3355530986177311286 that we have to start supporting people completely differently than we historically have. First, though, we have to change our view of people with intellectual disabilities.
Through the years, I have been taught that individuals with intellectual disabilities act out because of their particular deficits. The new way of looking at things is that they act out because the system they are served in is flawed and they don't have opportunities to live the life the rest of us do. They are deficient in being offered a high quality life, not deficient in cognition and communication, and behavior control.
I have been taught for over 20 years that people with intellectual disabilities exhibit problematic behaviors (the new term is "interfering" behaviors, per Tom) for four broad reasons after you have considered whether a medical issue is going on. Attention, Escape, Tangible, and Sensory. We have never changed that theory in all these years, even though it is demeaning to think of people with disabilities as somehow different from others. When they cry, often we think that they might be 'attention-seeking' whereas when I cry, I might just need to talk to a friend.
The new view has us stopping to ask the question, "What is their unmet need right now and how can I help them meet it?" And to stop asking, "How can I get them to stop misbehaving?" This is a huge difference in how we have been supporting people with intellectual disabilities.
Here's an example of how the new view might work. Say you have ten adults with varying degrees of intellectual disabilities in a classroom setting for their day program. This is fairly common that we provide habilitation services in a group setting much like a school. Let's say one of those adults has a difficult time sitting in their chair all day, or is not interested in the activities planned for that day, or is overwhelmed by loud noises, or is thirsty but does not have the skills to express it. How he decides to meet his need is to get up and walk out of the room, looking for relief from his distress. We would then determine that he is exhibiting escape behavior and come up with a plan to help him stay in his room. The plan might involve earning a certificate, offering a glass of water, escorting to an area away from others in order to relax, teaching him to ask to leave the room by some sign or gesture instead of just walking out, asking him to sit down before talking with him, and so on.
Instead of asking, "How can we keep him in the room?" we will now ask, "What does he need?" On the surface, the new question seems easy but this is where we actually have to make some tough, honest decisions. He doesn't just need a drink of water and a break from the noise. It goes deeper. The new questions are: Does he need to go to a small room every day for the rest of his life to learn skills? Does he need to stay in that room for 6 hours everyday and be expected to display quiet, conforming, compliant behavior? Does he have a need for a coffee break and cookie like the rest of do when our energy lags in the middle of the morning or afternoon? Does he need to feel productive, making a contribution to his world? Does he need to have more status in his life?
Could any of us adults spend our day in a classroom setting being told what we are going to learn and do? Could we cope with loud, unpredictable noise and crowding day-after-day for 40 years without being able to find a new career if we wanted? Could we deal with other people (staff) around us drinking soda, coffee, eating fast food while we are told we can't because it's not a healthy choice?
While the individuals at our day program and group homes are treated very well and have wonderful opportunities, it is still not enough because it wouldn't be enough for you or me. Now that we realize this, we can do better.
I wrote in Game-Changer http://www.blogger.com/blogger.g?blogID=4082941367652166326#editor/target=post;postID=3355530986177311286 that we have to start supporting people completely differently than we historically have. First, though, we have to change our view of people with intellectual disabilities.
Through the years, I have been taught that individuals with intellectual disabilities act out because of their particular deficits. The new way of looking at things is that they act out because the system they are served in is flawed and they don't have opportunities to live the life the rest of us do. They are deficient in being offered a high quality life, not deficient in cognition and communication, and behavior control.
I have been taught for over 20 years that people with intellectual disabilities exhibit problematic behaviors (the new term is "interfering" behaviors, per Tom) for four broad reasons after you have considered whether a medical issue is going on. Attention, Escape, Tangible, and Sensory. We have never changed that theory in all these years, even though it is demeaning to think of people with disabilities as somehow different from others. When they cry, often we think that they might be 'attention-seeking' whereas when I cry, I might just need to talk to a friend.
The new view has us stopping to ask the question, "What is their unmet need right now and how can I help them meet it?" And to stop asking, "How can I get them to stop misbehaving?" This is a huge difference in how we have been supporting people with intellectual disabilities.
Here's an example of how the new view might work. Say you have ten adults with varying degrees of intellectual disabilities in a classroom setting for their day program. This is fairly common that we provide habilitation services in a group setting much like a school. Let's say one of those adults has a difficult time sitting in their chair all day, or is not interested in the activities planned for that day, or is overwhelmed by loud noises, or is thirsty but does not have the skills to express it. How he decides to meet his need is to get up and walk out of the room, looking for relief from his distress. We would then determine that he is exhibiting escape behavior and come up with a plan to help him stay in his room. The plan might involve earning a certificate, offering a glass of water, escorting to an area away from others in order to relax, teaching him to ask to leave the room by some sign or gesture instead of just walking out, asking him to sit down before talking with him, and so on.
Instead of asking, "How can we keep him in the room?" we will now ask, "What does he need?" On the surface, the new question seems easy but this is where we actually have to make some tough, honest decisions. He doesn't just need a drink of water and a break from the noise. It goes deeper. The new questions are: Does he need to go to a small room every day for the rest of his life to learn skills? Does he need to stay in that room for 6 hours everyday and be expected to display quiet, conforming, compliant behavior? Does he have a need for a coffee break and cookie like the rest of do when our energy lags in the middle of the morning or afternoon? Does he need to feel productive, making a contribution to his world? Does he need to have more status in his life?
Could any of us adults spend our day in a classroom setting being told what we are going to learn and do? Could we cope with loud, unpredictable noise and crowding day-after-day for 40 years without being able to find a new career if we wanted? Could we deal with other people (staff) around us drinking soda, coffee, eating fast food while we are told we can't because it's not a healthy choice?
While the individuals at our day program and group homes are treated very well and have wonderful opportunities, it is still not enough because it wouldn't be enough for you or me. Now that we realize this, we can do better.
Friday, August 3, 2012
You Can't Handle the Truth
I heard on a radio show the other day that the vast majority of people do not want to hear the truth. They only want to hear the things that support their beliefs. I recognize that I resemble that remark. Much as I like to be challenged, I tend to look for and enjoy finding writings that validate my own beliefs and people who agree with me.
A significant hot button topic for me is the use of rewards when working with people with cognitive disabilities. Rewards I have seen used are soda, coffee, stars, certificates, pencils, special outings, and the most ubiquitous one - praise. The way I observe rewards being used seems manipulative and controlling. A common example is giving out rewards for things you want someone else to do. What about what they want to do? If they wanted to do it, they would find intrinsic reward in the activity so no extrinsic reward from staff or parents would be necessary.
Another thing staff do is to give out rewards too frequently and for insignificant tasks, thereby weakening the value of the reward over time for that person, assuming they did enjoy the reward to begin with. We use verbal praise as a reward in this way. We say, "Good job" for the most mundane tasks. If they put their lunch away - "good job." Greet with handshake- "good job." Dishes to sink with less than three prompts - "good job." Flush the toilet - "good job."
Something that most bothers me about rewards is that when I have seen them used, the person loses interest in the activity and gains interest primarily in the reward. If a person is encouraged to read more and gets rewarded by pizza (a real incentive used for kids through a famous pizza chain), the person doesn't read because they love to read anymore. They read because they want to earn pizza. They then lose interest in reading and the reward had the opposite effect in the long-term.
There are many other reasons I really dislike using rewards in my work. They make anxious people more anxious as now they are worried if they are going to earn their reward. They are used despite the person's protests that they don't want to learn or do what the staff want them to. If they are used to improve behavior, rewards don't target the reason why the person is not doing something or doing something. Rewards promote competition in others around them who might not be earning their rewards successfully. They don't teach people to be proud of their own accomplishments because once the rewards are used, people become conditioned to look for the approval of others in the form of rewards.You have to take an item away to make it rewarding. So, you can't let a person have soda if you are trying to get them to do something for soda.
There is another side to this topic, though, and that is why you have to be very careful to seek the truth, not just what you want to hear. While I dislike rewards in the way they are implemented, I have seen them be effective at improving someone's life when nothing else was working. Someone might be rewarded with a trip to the store and the purchase of a new dress for losing 20 lbs. Rewards often provide motivation to get someone over a hump in their life. One of the people with intellectual disability whom I know has great anxiety over having medical and dental treatments. This is very common, actually. We tried giving him sedating medications, using desensitization techniques, and holding him down. Nothing worked until a behavior specialist brought out chocolate on one appointment. That seems the most benign of all the techniques we tried with him and it provided him the incentive he needed to be successful. He sat quietly for his entire exam. Rewards can also provide motivation for someone who is not intrinsically motivated to be able to learn a new skill.
And I am embarrassed to say that as much as I protest their use, I have used rewards with my own daughter and successfully. Once, a while back when she was in her early 20's, she was on three psychotropic medications for outbursts and anxiety. As time went on and the medicines weren't working, higher doses were added. Eventually, the medications that she was using to combat anxiety were causing abject anxiety in her. She became afraid of noises and the anticipation that a noise might occur. She got very afraid at night listening to all the noises outside her window. She was so afraid, that in the middle of the night, she started making a bed for herself at the foot of our bed. She would bring her blankets and pillow and sleep on the wooden floor and we would find her there in the morning. This evolved into refusals to sleep alone and sleeping in our bedroom every night. We tried many things to get her to sleep in her own bed such as making a soothing nighttime ritual, staying in her bedroom until she was asleep, nightlights, bedtime stories. Nothing worked until I put a shaping plan in place where she would earn small rewards each day like DVD's, then weekly awards of going out to dinner at fast food places, then a final reward once she was back in her bed of going out to her restaurant of choice. It took about one month to get her back in bed, moving her pile of blankets and pillows inch-by-inch from our bedroom each night until she was back in her own room. To this day, much as I rail against rewards, I am happy I used them and it was worth it in this case.
I guess that's my point. Rewards can be a good thing if used respectfully, carefully, and with a plan to fade their use out once the person has accomplished what they wanted. So I have learned a valuable lesson. That I want to be conscious of seeking the truth, even if it goes against what I believe is true.
A significant hot button topic for me is the use of rewards when working with people with cognitive disabilities. Rewards I have seen used are soda, coffee, stars, certificates, pencils, special outings, and the most ubiquitous one - praise. The way I observe rewards being used seems manipulative and controlling. A common example is giving out rewards for things you want someone else to do. What about what they want to do? If they wanted to do it, they would find intrinsic reward in the activity so no extrinsic reward from staff or parents would be necessary.
Another thing staff do is to give out rewards too frequently and for insignificant tasks, thereby weakening the value of the reward over time for that person, assuming they did enjoy the reward to begin with. We use verbal praise as a reward in this way. We say, "Good job" for the most mundane tasks. If they put their lunch away - "good job." Greet with handshake- "good job." Dishes to sink with less than three prompts - "good job." Flush the toilet - "good job."
Something that most bothers me about rewards is that when I have seen them used, the person loses interest in the activity and gains interest primarily in the reward. If a person is encouraged to read more and gets rewarded by pizza (a real incentive used for kids through a famous pizza chain), the person doesn't read because they love to read anymore. They read because they want to earn pizza. They then lose interest in reading and the reward had the opposite effect in the long-term.
There are many other reasons I really dislike using rewards in my work. They make anxious people more anxious as now they are worried if they are going to earn their reward. They are used despite the person's protests that they don't want to learn or do what the staff want them to. If they are used to improve behavior, rewards don't target the reason why the person is not doing something or doing something. Rewards promote competition in others around them who might not be earning their rewards successfully. They don't teach people to be proud of their own accomplishments because once the rewards are used, people become conditioned to look for the approval of others in the form of rewards.You have to take an item away to make it rewarding. So, you can't let a person have soda if you are trying to get them to do something for soda.
There is another side to this topic, though, and that is why you have to be very careful to seek the truth, not just what you want to hear. While I dislike rewards in the way they are implemented, I have seen them be effective at improving someone's life when nothing else was working. Someone might be rewarded with a trip to the store and the purchase of a new dress for losing 20 lbs. Rewards often provide motivation to get someone over a hump in their life. One of the people with intellectual disability whom I know has great anxiety over having medical and dental treatments. This is very common, actually. We tried giving him sedating medications, using desensitization techniques, and holding him down. Nothing worked until a behavior specialist brought out chocolate on one appointment. That seems the most benign of all the techniques we tried with him and it provided him the incentive he needed to be successful. He sat quietly for his entire exam. Rewards can also provide motivation for someone who is not intrinsically motivated to be able to learn a new skill.
And I am embarrassed to say that as much as I protest their use, I have used rewards with my own daughter and successfully. Once, a while back when she was in her early 20's, she was on three psychotropic medications for outbursts and anxiety. As time went on and the medicines weren't working, higher doses were added. Eventually, the medications that she was using to combat anxiety were causing abject anxiety in her. She became afraid of noises and the anticipation that a noise might occur. She got very afraid at night listening to all the noises outside her window. She was so afraid, that in the middle of the night, she started making a bed for herself at the foot of our bed. She would bring her blankets and pillow and sleep on the wooden floor and we would find her there in the morning. This evolved into refusals to sleep alone and sleeping in our bedroom every night. We tried many things to get her to sleep in her own bed such as making a soothing nighttime ritual, staying in her bedroom until she was asleep, nightlights, bedtime stories. Nothing worked until I put a shaping plan in place where she would earn small rewards each day like DVD's, then weekly awards of going out to dinner at fast food places, then a final reward once she was back in her bed of going out to her restaurant of choice. It took about one month to get her back in bed, moving her pile of blankets and pillows inch-by-inch from our bedroom each night until she was back in her own room. To this day, much as I rail against rewards, I am happy I used them and it was worth it in this case.
I guess that's my point. Rewards can be a good thing if used respectfully, carefully, and with a plan to fade their use out once the person has accomplished what they wanted. So I have learned a valuable lesson. That I want to be conscious of seeking the truth, even if it goes against what I believe is true.
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