Those of you that have followed Mia's Space are aware that we have struggled with her weight. She is either unconcerned or actively works to thwart our every good intention. By "our" I mean her siblings, Laura, Joe, Fabersha, Lindsey, Wanda, Toni, Wanda and the other staff at St. Mary's, her swim coaches and other friends who have been engaged in the "Love to Lose Campaign."
Regardless of weight loss however, Mia is healthy and fit and contributing to this is the healthy living class in the Department of Kinesiology at the University of Georgia. Zoe Young, a PhD student, created the program due to her interest in the health of adults with disabilities.
She conceived an idea to bring adults with developmental disabilities into the Department located in the Ramsey Center to do weight training, balance and coordination, cardio, and also have fun. UGA students work with participants for 90 minutes, twice a week. They started with five participants and 7 students in 2012. This past semester the course had 25 participants and 32 students!
The UGA students are freshmen or sophomores, and come from exercise and sport science, biology, psychology, public health and nutrition science majors. Most of them want to become healthcare professionals of some kind and they enroll in the program to learn how to problem solve and interact with individuals with disabilities. Young says she has learned many things from organizing this program. The students had to learn new ways of getting to know the participants and had to think about the limitations of clinical tools, like imaging, and the design of exercise equipment that presents barriers to people with disabilities.
As a result, Young has undertaken research to redesign those tools, and the students created a fitness room with cheap and easy-to-use exercise stations for individuals with all kinds of disabilities as their final project. During the process of creating those exercise stations, the students brought out several issues and barriers that people with disabilities face when they enter a typical fitness center. The students wanted to make sure that their fitness room was inclusive and welcoming. From the beginning it was a learning experience for both the participants and the students.
"One of our hopes is to export this program model to other universities or hospitals so we can benefit more students and individuals with disabilities," shares Young.
The unique thing about the program is that it is a partnership between the community and the university. Students help participants from the community to become more physically active and eat healthier and the participants educate the students by providing person-to-person experiences. "Using students who register for credit hours allows us to take an individual approach towards each participant with different needs and create a personalized wellness plan. This program also allows students to get early exposure to different disabilities and health conditions. As most of our students are entering the healthcare field, we think that this would be a good way to promote a more inclusive and friendly healthcare environment in the future. We really hope to make a little contribution to the field of disability and health."
by Pat Nobbie, PhD, Mia' mom
To find out more about the Love to Lose Campaign, contact Kevin McCully at .
Every once in a while, universes converge – in a short span of time, the same message emerges from multiple sources and this is both unsettling and confirming.
In October, I was in Athens for Mia’s birthday, and it was magical. She met the UGA football team and got her picture taken with quarterback Jake Fromm. Laura’s third baby, Tate, arrived in the wee hours just after her birthday and she held him in the hospital where she works when he was just eight hours old. We gathered all her friends at Applebee’s for the traditional birthday dinner; and attended a costumed fall festival with the families she has grown up with.
It was at this event that another mom and I had a conversation about “what to do?” What to do about the young people who surrounded us at the festival who wanted jobs, wanted to move on from their parent’s homes, knowing there was a multi-year waiting list for any type of support from the State? Could we do it ourselves, she wondered? Could we work with someone to start businesses, figure out shared living, and not wait on the system?
Not too much later, I was at the TASH conference in Atlanta and heard the same message from Rod and Ann Turnbull as they shared “truths” from their son’s well-lived life.
Ann’s message was to pick two or three truths and focus on them. As parents, we often don’t get the luxury of selecting what to focus on – things happen and we deal with them. But this message, following on what my mom friends in Athens wonder, and then reaffirmed with what another group of mom friends presented at a TASH session called “Advocates, Leaders, Friends,” reinforced what I already believe. But it was equally unsettling because it challenges us.
Here’s the thing. WE KNOW WHAT TO DO. We know how school inclusion works and why it is so valuable; we know how to create community around people; we know the most successful employment practices. We know the barriers imposed by outdated policies and regulations and how they should be changed. We know how even a little financial support can go a long way to supporting people to have “an enviable life.” And, we actually know how good practice and some investment saves money in the long run.
What’s unsettling is the inertia of the administrative and political systems. Over my years of work, I have alternately advocated for systems to provide what people need and done an end-run around them. I suppose we will always have to do both. Not everyone has activists in their corner. And innovations need system support to be sustainable.
So as we go concurrently into the 2018 Georgia Legislative Session and the next round of Congress, recognize system impact and don’t lose your capacity for outrage. Choose another “truth” that has meaning for you … but, don’t postpone joy.
Happy New Year!
10 Truths from 150 (or 200) Years or So of Our Lives
Seek an enviable life.
Expect the unexpected.
Create your own village.
Go boldly into the unknown.
Be accountable for the whole life.
Breathe some.
Recognize system impact.
Never lose your capacity for outrage.
Pursue dignity diligently.
Never postpone joy.
Credit: From Ann and Rod Turnbull’s Keynote at TASH, 12.14.2017, (loosely recorded!)
To read more in Making a Difference magazine, see below:
Mia rides paratransit to work three days a week. The fare is $3.20 each way, in cash, exact change. She can buy a book of 10 tickets for $32. She must give the driver the money and get the tickets at the same time, so this involves some arrangements. Mia lets me know when she has two tickets left. I tell Fabersha, who supports her two days a week, to go to the bank with Mia and get the money for the tickets. They put one $20, one $10 and two $1 bills in an envelope. I email the transit system and let them know what day Mia will be bringing her money for tickets and they send the tickets out with the driver. The exchange is made, and she has another week and a half of transit. Mia is very organized, so once we got this system down, it worked like clockwork.
So imagine my reaction when transit called her to say the fare was going up 30¢ a ride, effective immediately. She couldn't pay it all at once, she had to pay it ride by ride. This gave me serious pause. I thought, "Do they have any idea how hard it's going to be for me to explain to Mia to find an extra quarter and nickel for each ticket in her book?"
Here's what happened. I called her and tried to explain it to her. She was frustrated and so was I. But a couple minutes later, I received this text message:
I call her back and say, "You have dimes, you need two quarters and two nickels." A minute later, I get this: Ok, not quite, so I call her back, and say again, "No, you need TWO nickels and TWO quarters."
At this point, my hall mates are engaged in this conversation. It took two attorneys and a PhD to figure out maybe we should send HER the picture of what she needs. I lay it out and send Mia this. "This is what you need. Two quarters and two nickels." At which point Mia calls back all frustrated and says "Mom, I can't do it!" So I ask her, "What do you have on you?" She says, and I can picture her slapping her right and left pockets, "I have a quarter and two nickels here, and a quarter and two dimes here," and I tell her, "Just get on the bus and show the driver what you have. It's enough."
This is not a criticism of the individuals who run the paratransit system. They are always responsive, working out schedules for getting people with disabilities to work and appointments with a limited budget, staff and only a few vehicles. But this transaction sparked a lot of conversation in the office. Few people appreciate the granularity of life's daily tasks for someone with a cognitive disability. For those of us working on policy, these incidents keep us real. The transit system would be so much easier with smart cards that could be loaded online, and regular slots for people with regular schedules like Mia. But tax-averse politicians prevent an increase in the budget. Instead of supporting work, we are making it harder.
I was reminded of the opening lines of Beth Mount's TED Talk. "Imagine a world that works for everyone. It's time."
A few years ago, I gave a keynote talk with this title to a group of educators from the Southeast Regional Resource Center (SERRC) region.
I started the slide show with "My Transition to Transition," in which I spent a little time relating how my work in transition evolved from looking at the world through the lens of Mia's life and possibilities, and then gathering people and resources together to fill in some of the gaps. Along the way I have realized that this journey is never done...we will always be transitioning, and we will always be taking stock and asking, "Are we there yet?"
I'm going to tie the process of transitioning youth from high school to real life to Centers for Medicaid Services' (CMS) final rule for the characteristics of home and community-based settings that was released in January. States will need to assess whether their settings for home and community residential and day services provided under their waivers meet the characteristics of most integrated settings, in turn preventing isolation of individuals with disabilities from the community and other individuals who do not receive these types of services. States will need to craft a transition plan with CMS to move those settings and services to be more characteristically like "real life." Now, back to high school. In the presentation mentioned above, I talked about Partnerships for Success, and how the opportunities for friendships and a social life and community participation developed naturally, teaching many of us that assumptions we had made about students with disabilities and programming that we had perpetrated with students' 'best interests' in mind had over the years only succeeded in isolating youth from each other. Research demonstrates that a majority of non-disabled high school students are interested in becoming friends with students with disabilities, but are unsure how. When questioned, students felt as though general education classrooms and high school clubs are the best places for these friendships to occur.
Students won't say, "We need to meet in integrated settings!" Without the benefit of rules and regulations-in spite of them at times-students figured out that the best way for them to get to know each other was to hang out with each other, in places where everyone hangs out. Adult providers would do well to take a lesson from the youth who are transitioning from these experiences. It turns out employment in the community is another way to hang out where everyone hangs out. Most high school students work in jobs somewhere in their community. Currently, most students with disabilities don't have this essential life experience after high school. But while we've got a good core of students from PFS, and ASPIRE and Project SEARCH who have the "hanging out" part down, let's make the supports available that some kids will need so they can continue to thrive in the communities they've become part of.
Mia didn't necessarily get the benefit of anything we designed at the Council. But somehow she intuitively had the hanging out part down, and I tried not to get in her way. She's living and working in places where everyone else comes and goes. Undoubtedly, there are other transitions in our future, but if she has anything to do with it, the hanging out part won't change.
