Natural Supports
Below is an excerpt from the Maine Coalition for Housing and Quality Services minutes from the 1/9/2017 meeting, which included a presentation on natural supports:
Maine Coalition for Housing and Quality Services
January 9, 2017
Featured speakers: Margaret Cardoza and Tyler Ingalls, Self-Advocates. Topic: Finding your natural supports.
Cullen: Today we have Margaret Cardoza and Tyler Ingalls, both self-advocates, presenting on natural supports. We have been talking about natural supports for a long time. One of the primary features included in the White Paper, and subsequent Developmental Services Lifelong Continuum of Care, was the concept of helping people to maximize natural supports. The goal is to get people into the community, maximize their natural supports, and in turn minimize paid supports, having people connected to their communities as seamlessly as possible.
Tyler Ingalls: What’s the number one reason we closed institutions? To have people in the community. What is the average cost of an emergency room visit? It’s a lot – more than $1,000. Previously when I was playing community sports, I was mostly within communities where people were disabled. I experienced a number of problems. I was 270lbs, and going to the emergency room (ER) every other week due to problems associated with my weight, specifically back pain. I was calling the ER every other week to get shots to alleviate my pain, I had to see a Chiropractor, and found out I had arthritis in my hips. I felt isolated and ostracized in the community.
I moved to Portland to become more involved in the skating community. One day at Happy Wheels I was recruited for roller derby by someone who didn’t know anything about disabilities. Initially I was concerned about whether or not my reading capabilities would affect my participation in roller derby, as 90% of my life involves something I can’t do due to my reading proficiency. He said it would be fine, and though I didn’t quite believe it because of my previous experiences, I decided to trust him and sign up. I was accepted by the roller derby community – which is comprised mostly of people who had been outcasts in their own communities. Generally, there is a lot of segregation in our paid services; we haven’t quite achieved fully integrated services. Most services center around making people comfortable in group homes and day programs, solely involving people with disabilities and not people in the community around them.
Margaret Cardoza: I’m going start by telling a little of my story, some background information on my disability, and then describe my experience in getting natural supports – which doesn’t sound very natural, by the way!
I’m 56 years old. My mother was prescribed barbiturates and tranquilizers during her pregnancy with me. In those days, medications were handed out like candy; nobody knew the risks or possible consequences. Inevitably there were complications, so much so that when I was born the doctors requested to euthanize me, as though it was harder on the doctors than it was my parents. My parents refused, and thankfully their financial situation afforded them the opportunity to do everything necessary to keep me alive. I went to public school in the 1960’s; in those days I spent most of my time in the corner, and labeled the “R word.” I was kicked out of school, because by law they were not required to give people like me an education. I then went to a special school, run by the Catholic Church. I was segregated, and had to take a special bus away from my neighborhood, away from everyone else. Thank goodness the laws were passed (Section 504 of the Rehabilitation Act of 1973) granting protections against the discrimination I, and others, experienced. I ended up going back to the school I was kicked out of! Overall, however, I had a very difficult time and had to advocate for myself constantly. Ultimately, I achieved a Master’s in Education, and got married!
Regarding natural supports, first I really think we need to change that title. It doesn’t feel good when you have to tell people it’s natural – if it’s natural you shouldn’t have to say so! We need to change the language to building community relationships, something normal and healthy. According to the Maine Department of Health and Human Services (DHHS): “Natural Supports are the people associated with the setting of the participant. They include unpaid relationships with family members, friends, co-workers, neighbors and acquaintances and are of a reciprocal nature. Such supports promote valued roles within one’s community and maximize opportunities for independence and self-sufficiency.” In the PCP (Person Centered Plan) natural supports are only referenced in one section, C14 – Building Unpaid Relationships. The Department and community want natural supports; they need to be a larger portion of the PCP requirements so that people feel valued and included.
Due to my disability, historically I have been severely misunderstood, and often given mental health labels. As such, I have been institutionalized many times. Due to this I was listed as high-risk, and given first priority so I was able to more quickly receive services. However, ultimately my goal is to get rid of them! I was assigned services through Shalom House; I was assigned a staff person, though I would have preferred to be able to make my own staffing choice. This was before computers, when crisis hotlines used to maintain large books with information on community resources. I asked my staff person to get me that book. She brought me the book, copied the entire thing, and I went through every page finding programs and activities in which I had interest. Once I identified a few groups, I had my staff to literally hold my hand and walk me into the room so I could participate in the groups that had piqued my interest. There were some groups from whom I wanted to run immediately, though I endured politely until the end. However, my worker would go back to them. It turned out I was helping my staff, who was deprived of community resources, access services for herself.
I pursued other resources, and as a result I joined a group called Toastmasters, where I learned how to receive and provide feedback and constructive criticism, which is really scary. Learning to speak and raise my voice was amazing. I have a room filled with awards and trophies, and I even received the highest Toastmasters award. Through this I developed my love of and proficiency in storytelling, and found MOOSE Tellers (Maine Organization of Storytelling Enthusiasts). I became the group’s Treasurer and I facilitate group activities. Being able to tell stories has been the most amazing accomplishment for me. Overall, my hope is that people have staff who make an effort to know their interests and likes, and then help people connect the dots to find those resources in the community, and if they don’t exist within the community, make them! This is how we can create inclusion and celebrate belonging. I reached out to a few agencies for help on this subject, in preparation for this presentation, and the response was that they don’t provide natural supports.
Discussion:
-There was discussion regarding the challenges for agencies to facilitate and create natural supports, as whether they are providing in-home or community supports, the DSP (Direct Support Professional) has to be there in order to document and bill. There appears to be a disconnect between facilitating those connections in the community and then backing off. That’s something we really need to work on; people are out in the community but that next step isn’t taking place.
Margaret: The Developmental Disabilities Council had a great natural support project a few years ago. Excuses are often offered by agencies, such as the turnover rate being high, which frustrates me; it feels like an insult as someone who is receiving the service. There could be an outline that provides an orientation about the people receiving services to assist new staff – things they like to do, places they like to go, etc. This would help immensely. However, there isn’t funding for this; developing unpaid relationships is a requirement on the PCP but agencies aren’t given the means necessary to adequately fulfill this. I would love to see an agency claim that it’s the natural support expert and make something happen.
-It was stated that in discussing her experience having a staff person accompany her to an activity, who then decided to stay at the activity herself, Margaret pointed out an inherent problem with the system. Staff are being asked to do for others what they don’t necessarily have themselves. It’s a difficult situation, and a hard thing to teach.
Peter Stuckey: I’m curious if you have thought about how we could restructure supports, beginning with children’s services, so that we are building these expectations into people’s lives, that you both have brought into your own. If kids grew up in an environment where what you’re talking about was the norm, we wouldn’t wind up with so many challenges down the road. If we as a community learned how to support children, then supporting and engaging with adults would be part of the fabric of the larger community life. I’m curious if there are things that could happen earlier in the system that would diminish the challenges you had to address.
Margaret: I was a Special Ed elementary educator in Washington County; my students were very challenging. My goal when I went to that school was to shut the program down – all of those children belonged in regular classrooms. It’s one thing to get special attention and support for reading and math, but it’s the social aspect, developing relationships with peers, that is missing when kids are segregated in school. This social connection is vital. I still remember isolation and shame in school; the same issues exist today. I think we should reverse the process; if I couldn’t get kids into regular classrooms I would have the classroom come to them. I was a computer consultant at the school; I gave computer presentations to the school classrooms, where peers were being educated by the special needs kids. We are really blessed, as things have become more integrated for which I’m grateful, but it needs to progress so that the “special class” is instead considered a study hall. We need to establish a more diverse and inclusive systems so once kids leave school they’ve established friendships, created peer networks, and have been truly included. It’s getting there but more work need to be done.
-It was stated that changing the “natural support” language is a great idea. The cultural language used needs to be re-examined and made more user-friendly. It was stated that there needs to be a larger umbrella for allowable services so that developing natural supports as described today can come to fruition with the assistance of paid supports. Parents stated that their children wouldn’t be able to develop natural supports without the paid supports in place to assist. There was discussion regarding different programs that help foster relationships, specifically relationships with peers in school. Though some of the programs are great, those relationships often don’t carry outside of the classroom or activity. It was stated that there aren’t public service announcements for people with ID/DD working in the community, showing who they are, what community inclusion looks like, and so on. Promoting some of these stories, showing the community more about acceptance of individuals with disabilities, could be very advantageous. Parents provided examples of volunteer activities in which their children participate, where they’re alongside their peers doing things seen as valuable in the community. Activities such as this can help facilitate relationships much more naturally.
Margaret: Another issue that came up for me and some of my peers is the fact that we’ve always been told “don’t talk to strangers!” I still carry that message with me today. Talking to strangers is an example of risk. I want to challenge families to allow their kids to take more risks. I was grateful for my father; he gave me enormous encouragement, pushing me to take risks, but being sure to say that if I fall down he’d be there. We need more of this.
-It was stated that the opportunity to succeed is very important, but equally so is allowing people the chance to fail.
-It was asked if Margaret and/or Tyler knew anyone with mobility issues or limited language skills, and what has worked for them in terms of being more independent and developing relationships in the community.
Tyler: There is Maine Adaptive Sports and Recreation, as well as a network of other accessible sports, including wheelchair rugby and basketball (click here for more information).
Margaret: In my story group we have a mother and her son who has a disability. He has developed relationships, a sense of comradery with the group. We don’t see his disability; we see his abilities. Once that’s in place, the sky’s the limit.
Cathy Register (OCFS): In the Children’s Behavioral Health planning process, the first page of the plan features a personal profile with questions intended to be answered by the individual receiving services. This is going to be a standardized case management form. This first page is very important; we want kids to attend these meetings and that very first page is about hearing from them, their wants, needs, desires, skills, etc. This information might lead to better staff matching. We’re excited about this. Additionally, I’m going to take back all of the comments I’ve heard today about natural supports; this is all very helpful.
-It was asked how OCFS would accommodate people who are verbal but are unable to effectively express their feelings or effectively respond to the questions in the personal profile.
Cathy: All agencies providing case management will be asked to use this form. If someone has specific needs, such as the need for an interpreter or having a family member present, accommodations would certainly be made so that all children have a voice.
-It was stated that in terms of accommodations, pictorial decision making can be helpful. It was also stated that the naming of the support system, “Behavioral Health,” has within it problems in terms of medical co-morbid diagnoses.
Cullen: Margaret and Tyler, I want to thank you both; this was a great presentation that generated a robust discussion!
End of presentation. (Round of applause)
Maine Coalition for Housing and Quality Services
January 9, 2017
Featured speakers: Margaret Cardoza and Tyler Ingalls, Self-Advocates. Topic: Finding your natural supports.
Cullen: Today we have Margaret Cardoza and Tyler Ingalls, both self-advocates, presenting on natural supports. We have been talking about natural supports for a long time. One of the primary features included in the White Paper, and subsequent Developmental Services Lifelong Continuum of Care, was the concept of helping people to maximize natural supports. The goal is to get people into the community, maximize their natural supports, and in turn minimize paid supports, having people connected to their communities as seamlessly as possible.
Tyler Ingalls: What’s the number one reason we closed institutions? To have people in the community. What is the average cost of an emergency room visit? It’s a lot – more than $1,000. Previously when I was playing community sports, I was mostly within communities where people were disabled. I experienced a number of problems. I was 270lbs, and going to the emergency room (ER) every other week due to problems associated with my weight, specifically back pain. I was calling the ER every other week to get shots to alleviate my pain, I had to see a Chiropractor, and found out I had arthritis in my hips. I felt isolated and ostracized in the community.
I moved to Portland to become more involved in the skating community. One day at Happy Wheels I was recruited for roller derby by someone who didn’t know anything about disabilities. Initially I was concerned about whether or not my reading capabilities would affect my participation in roller derby, as 90% of my life involves something I can’t do due to my reading proficiency. He said it would be fine, and though I didn’t quite believe it because of my previous experiences, I decided to trust him and sign up. I was accepted by the roller derby community – which is comprised mostly of people who had been outcasts in their own communities. Generally, there is a lot of segregation in our paid services; we haven’t quite achieved fully integrated services. Most services center around making people comfortable in group homes and day programs, solely involving people with disabilities and not people in the community around them.
Margaret Cardoza: I’m going start by telling a little of my story, some background information on my disability, and then describe my experience in getting natural supports – which doesn’t sound very natural, by the way!
I’m 56 years old. My mother was prescribed barbiturates and tranquilizers during her pregnancy with me. In those days, medications were handed out like candy; nobody knew the risks or possible consequences. Inevitably there were complications, so much so that when I was born the doctors requested to euthanize me, as though it was harder on the doctors than it was my parents. My parents refused, and thankfully their financial situation afforded them the opportunity to do everything necessary to keep me alive. I went to public school in the 1960’s; in those days I spent most of my time in the corner, and labeled the “R word.” I was kicked out of school, because by law they were not required to give people like me an education. I then went to a special school, run by the Catholic Church. I was segregated, and had to take a special bus away from my neighborhood, away from everyone else. Thank goodness the laws were passed (Section 504 of the Rehabilitation Act of 1973) granting protections against the discrimination I, and others, experienced. I ended up going back to the school I was kicked out of! Overall, however, I had a very difficult time and had to advocate for myself constantly. Ultimately, I achieved a Master’s in Education, and got married!
Regarding natural supports, first I really think we need to change that title. It doesn’t feel good when you have to tell people it’s natural – if it’s natural you shouldn’t have to say so! We need to change the language to building community relationships, something normal and healthy. According to the Maine Department of Health and Human Services (DHHS): “Natural Supports are the people associated with the setting of the participant. They include unpaid relationships with family members, friends, co-workers, neighbors and acquaintances and are of a reciprocal nature. Such supports promote valued roles within one’s community and maximize opportunities for independence and self-sufficiency.” In the PCP (Person Centered Plan) natural supports are only referenced in one section, C14 – Building Unpaid Relationships. The Department and community want natural supports; they need to be a larger portion of the PCP requirements so that people feel valued and included.
Due to my disability, historically I have been severely misunderstood, and often given mental health labels. As such, I have been institutionalized many times. Due to this I was listed as high-risk, and given first priority so I was able to more quickly receive services. However, ultimately my goal is to get rid of them! I was assigned services through Shalom House; I was assigned a staff person, though I would have preferred to be able to make my own staffing choice. This was before computers, when crisis hotlines used to maintain large books with information on community resources. I asked my staff person to get me that book. She brought me the book, copied the entire thing, and I went through every page finding programs and activities in which I had interest. Once I identified a few groups, I had my staff to literally hold my hand and walk me into the room so I could participate in the groups that had piqued my interest. There were some groups from whom I wanted to run immediately, though I endured politely until the end. However, my worker would go back to them. It turned out I was helping my staff, who was deprived of community resources, access services for herself.
I pursued other resources, and as a result I joined a group called Toastmasters, where I learned how to receive and provide feedback and constructive criticism, which is really scary. Learning to speak and raise my voice was amazing. I have a room filled with awards and trophies, and I even received the highest Toastmasters award. Through this I developed my love of and proficiency in storytelling, and found MOOSE Tellers (Maine Organization of Storytelling Enthusiasts). I became the group’s Treasurer and I facilitate group activities. Being able to tell stories has been the most amazing accomplishment for me. Overall, my hope is that people have staff who make an effort to know their interests and likes, and then help people connect the dots to find those resources in the community, and if they don’t exist within the community, make them! This is how we can create inclusion and celebrate belonging. I reached out to a few agencies for help on this subject, in preparation for this presentation, and the response was that they don’t provide natural supports.
Discussion:
-There was discussion regarding the challenges for agencies to facilitate and create natural supports, as whether they are providing in-home or community supports, the DSP (Direct Support Professional) has to be there in order to document and bill. There appears to be a disconnect between facilitating those connections in the community and then backing off. That’s something we really need to work on; people are out in the community but that next step isn’t taking place.
Margaret: The Developmental Disabilities Council had a great natural support project a few years ago. Excuses are often offered by agencies, such as the turnover rate being high, which frustrates me; it feels like an insult as someone who is receiving the service. There could be an outline that provides an orientation about the people receiving services to assist new staff – things they like to do, places they like to go, etc. This would help immensely. However, there isn’t funding for this; developing unpaid relationships is a requirement on the PCP but agencies aren’t given the means necessary to adequately fulfill this. I would love to see an agency claim that it’s the natural support expert and make something happen.
-It was stated that in discussing her experience having a staff person accompany her to an activity, who then decided to stay at the activity herself, Margaret pointed out an inherent problem with the system. Staff are being asked to do for others what they don’t necessarily have themselves. It’s a difficult situation, and a hard thing to teach.
Peter Stuckey: I’m curious if you have thought about how we could restructure supports, beginning with children’s services, so that we are building these expectations into people’s lives, that you both have brought into your own. If kids grew up in an environment where what you’re talking about was the norm, we wouldn’t wind up with so many challenges down the road. If we as a community learned how to support children, then supporting and engaging with adults would be part of the fabric of the larger community life. I’m curious if there are things that could happen earlier in the system that would diminish the challenges you had to address.
Margaret: I was a Special Ed elementary educator in Washington County; my students were very challenging. My goal when I went to that school was to shut the program down – all of those children belonged in regular classrooms. It’s one thing to get special attention and support for reading and math, but it’s the social aspect, developing relationships with peers, that is missing when kids are segregated in school. This social connection is vital. I still remember isolation and shame in school; the same issues exist today. I think we should reverse the process; if I couldn’t get kids into regular classrooms I would have the classroom come to them. I was a computer consultant at the school; I gave computer presentations to the school classrooms, where peers were being educated by the special needs kids. We are really blessed, as things have become more integrated for which I’m grateful, but it needs to progress so that the “special class” is instead considered a study hall. We need to establish a more diverse and inclusive systems so once kids leave school they’ve established friendships, created peer networks, and have been truly included. It’s getting there but more work need to be done.
-It was stated that changing the “natural support” language is a great idea. The cultural language used needs to be re-examined and made more user-friendly. It was stated that there needs to be a larger umbrella for allowable services so that developing natural supports as described today can come to fruition with the assistance of paid supports. Parents stated that their children wouldn’t be able to develop natural supports without the paid supports in place to assist. There was discussion regarding different programs that help foster relationships, specifically relationships with peers in school. Though some of the programs are great, those relationships often don’t carry outside of the classroom or activity. It was stated that there aren’t public service announcements for people with ID/DD working in the community, showing who they are, what community inclusion looks like, and so on. Promoting some of these stories, showing the community more about acceptance of individuals with disabilities, could be very advantageous. Parents provided examples of volunteer activities in which their children participate, where they’re alongside their peers doing things seen as valuable in the community. Activities such as this can help facilitate relationships much more naturally.
Margaret: Another issue that came up for me and some of my peers is the fact that we’ve always been told “don’t talk to strangers!” I still carry that message with me today. Talking to strangers is an example of risk. I want to challenge families to allow their kids to take more risks. I was grateful for my father; he gave me enormous encouragement, pushing me to take risks, but being sure to say that if I fall down he’d be there. We need more of this.
-It was stated that the opportunity to succeed is very important, but equally so is allowing people the chance to fail.
-It was asked if Margaret and/or Tyler knew anyone with mobility issues or limited language skills, and what has worked for them in terms of being more independent and developing relationships in the community.
Tyler: There is Maine Adaptive Sports and Recreation, as well as a network of other accessible sports, including wheelchair rugby and basketball (click here for more information).
Margaret: In my story group we have a mother and her son who has a disability. He has developed relationships, a sense of comradery with the group. We don’t see his disability; we see his abilities. Once that’s in place, the sky’s the limit.
Cathy Register (OCFS): In the Children’s Behavioral Health planning process, the first page of the plan features a personal profile with questions intended to be answered by the individual receiving services. This is going to be a standardized case management form. This first page is very important; we want kids to attend these meetings and that very first page is about hearing from them, their wants, needs, desires, skills, etc. This information might lead to better staff matching. We’re excited about this. Additionally, I’m going to take back all of the comments I’ve heard today about natural supports; this is all very helpful.
-It was asked how OCFS would accommodate people who are verbal but are unable to effectively express their feelings or effectively respond to the questions in the personal profile.
Cathy: All agencies providing case management will be asked to use this form. If someone has specific needs, such as the need for an interpreter or having a family member present, accommodations would certainly be made so that all children have a voice.
-It was stated that in terms of accommodations, pictorial decision making can be helpful. It was also stated that the naming of the support system, “Behavioral Health,” has within it problems in terms of medical co-morbid diagnoses.
Cullen: Margaret and Tyler, I want to thank you both; this was a great presentation that generated a robust discussion!
End of presentation. (Round of applause)