MITCHELL LEVITZ
WIHD
Nicki Pombier: Mitchell Levitz has written extensively on disabilities and advocacy, including a memoir he co-authored with Jason Kingsley entitled Count Us In. He has given speeches and led workshops nationwide, served on many boards and committees, and throughout his life has been involved in service to his community. He currently works as a disability specialist at the Westchester Institute for Human Development. Born in 1971, Mitchell has Down syndrome, and I interviewed him about his experiences growing up, moving out, and pursuing his career. Much of his work focuses on empowering individuals with disabilities to be their own health advocates. Here, he describes some of the programs related to health education that he has worked on at the Westchester Institute for Human Development, and notes the impact of the Affordable Health Care Act on individuals with disabilities.
Mitchell Levitz: One of the projects that I was very glad with, we developed a curriculum called My Health, My Choice, My Responsibility. [?] and myself had several focus groups where we brought individuals in and we talked to them about how they can make their own decisions about their own health. One of the tasks that we wanted to figure out was, What questions do you want to ask you doctor? One of the things that we decided to do was to say to them, Write down questions ahead of time. One of the things that we also came up with was another form where they would write their own medical history so they could share that information with their own doctor. Nowadays, people are able to access their own medical records, and we train individuals how to access this, and they really have a better understanding. I think it’s important to be aware of your own health. It’s important for myself or for others who advocate for healthcare. It’s something that I think is very critical. It’s important for people with disabilities to have their own health insurance. I think this is something that we’ve been advocating for years and years. Make sure that insurance companies do not discriminate against a person with a pre-condition. Thanks to the Affordable Health Care Act, that now is in effect, and that’s what we’ve been advocating for for many years. Not to get all political, but I think one of the things that we have learned is that once they have a better understanding of how to advocate for their own health, how to create their own health records, that way they’ll be able to keep track of everything, then they’ll be able to do this on their own, with support from the whole family.
Self-Advocacy
Nicki Pombier: Mitchell Levitz has written extensively on disabilities and advocacy, including a memoir he co-authored with Jason Kingsley entitled Count Us In. He has given speeches and led workshops nationwide, served on many boards and committees, and throughout his life has been involved in service to his community. He currently works as a disability specialist at the Westchester Institute for Human Development. Born in 1971, Mitchell has Down syndrome, and I interviewed him about his experiences growing up, moving out, and pursuing his career. He describes starting a self-advocacy group through the Westchester ARC in the mid-1990s, working with individuals who were living in group homes or receiving services from the ARC.
Mitchell Levitz: I founded a self-advocate group there. We had individuals who were receiving services from the ARC, and we were able to reach out to them to see if they were interested in being involved with a group who met once a month, and we talked through different issues that they brought up. Some of them were dealing with trepidation, dealing with housing, independent living. I think how they could get more involved in their community. The goal is to get these different individuals together, talk about what is important to them, and to really get them to open up, make them more comfortable, so that they can be completely themselves, so that they can begin to make their own choices and decisions, instead of allowing the ARC staff to make them for them.
Nicki: Was there any example from that self-advocacy group where you felt like you had an especially strong impact on them, or you saw them speaking up for themselves when they wouldn’t have before?
Mitchell: I think that they did, eventually that they did. They did speak up because they had meetings at their own homes. They spoke up to their house staff and told them exactly what they wanted to do. The other impact that I saw, they got really involved in the organization, and they got involved on different committees, they wound up being on the board, and even better, they even worked there. So they got work experience.
NIH
Nicki Pombier: Mitchell Levitz has written extensively on disabilities and advocacy, including a memoir he co-authored with Jason Kingsley entitled Count Us In. He has given speeches and led workshops nationwide, served on many boards and committees, and throughout his life has been involved in service to his community. He currently works as a disability specialist at the Westchester Institute for Human Development. Born in 1971, Mitchell has Down syndrome, and I interviewed him about his experiences growing up, moving out, and pursuing his career. In this excerpt from our conversation about self-advocacy, Mitchell describes some of the barriers facing individuals with Down syndrome, and how he’s working to address them through his work with the National Institutes of Health.
Nicki: In our last interview, I asked about the barriers that individuals with Down syndrome face to self-determination, and you said, It’s other people making their choices for them.
Mitchell Levitt: Right.
Nicki: So with a lot of the advocacy organizations being really supportive of families and parents, do you think that makes it hard for them to deal with some of the issues related to adulthood and self-determination and self-advocacy?
Mitchell: In a way, there are some issues. I’m talking about people who are doctors or people in the medical field or professionals, like medical aids. It’s very difficult for an individual with Down syndrome really to comprehend it. They would not understand, and they need help to understand exactly what this person is saying. To me, that is one of the things that a family member or parent or a service worker can help them with, because that’s the role they play, because we’re talking about barriers. That’s why one of the things that we try to encourage is people—lawyers, doctors, professionals—is to use people for [?] to make their materials user friendly. It would be easier for individuals with Down syndrome to understand exactly what they’re reading.
Nicki: So that’s a role that you see parents or service coordinators being helpful in for adults for Down syndrome. Are there other areas where you think there’s more work to be done in terms of trusting the individual with Down syndrome to make the decisions on their own, or…
Mitchell: Right now, I think the same thing applies to research. I’m totally serving on NIH. The National Institute of Health. I’m working in the Down syndrome research consortium. We do a lot of work pertaining to research. The reason why I’m bringing this up, because I think one of the things we’re trying to do for the Down syndrome community is to try to get them more involved, make them more aware of what we’re working on. So we are actually in fact reaching out to the Down syndrome community, so if you’re asking that question I think one of the things we need to do is education. We need to educate people how to use people’s [?] language and to encourage people to use user-friendly language. I think that the work that I’m doing with the Down syndrome consortium is actually helping them. I’ve been advocating to make sure that the Down syndrome community understands exactly what we’re trying to accomplish in the different research projects, particularly with the website, and patients registry, all those different research initiatives.
Doctors
Nicki Pombier: Mitchell Levitz has written extensively on disabilities and advocacy, including a memoir he co-authored with Jason Kingsley entitled Count Us In. He has given speeches and led workshops nationwide, served on many boards and committees, and throughout his life has been involved in service to his community. He currently works as a disability specialist at the Westchester Institute for Human Development. Born in 1971, Mitchell has Down syndrome, and I interviewed him about his experiences growing up, moving out, and pursuing his career. Much of his work focuses on empowering individuals with disabilities to be their own health advocates. Here, he shares his thoughts on what medical professionals can do to ensure they are best supporting their patients with disabilities.
Mitchell Levitz: I think one of the first things it’s important is for parents or health staff to go through with people to their appointments, and one of the things it’s important for the individual to do, is to ask that the doctor speak to you, not to my family member, not to my health manager or staff. Tell your doctor, Speak to me directly. They’re the ones who make the decisions for themselves. I think that it’s important for doctors and nurses to understand that it's important to make sure that individuals fully understand what you’re talking about. Not to use these medical terms that would be difficult for them, but talk to them like adults, making sure that they understand what you’re trying to explain to them and use friendly language, like people's first language.
Nicki: What challenges to do you think there are in asking questions or speaking up when they don’t understand something?
Mitchell: I think that if they ask questions, they will have answers to the questions. It’s important to have a relationship with the doctor. That’s the most important thing, to establish that relationship. If you establish that relationship, you’ll be able to go back to that doctor. That way, you don’t have to keep on going back to different ones. It will make sure that you’re comfortable with the person, and make sure that you’re able to talk to them about your health. I actually am able to go to my own doctor on my own. My doctor’s office is very nearby, so I’m able to walk over there on my own. I go to appointments, make sure that I always ask different questions that I think are important to ask, and see if there are any changes in my health, so they can figure out exactly what to do to make it better.