Decatur, Georgia (Senate District 42)
On a beautiful, sunny, hot day in early July, Mae opens the front door of her apartment with a huge and welcoming smile. She and her sister, Lena, are clearly practicing their best hospitality skills. They ask pointedly if the guests want water, shake their hands and ask they how are doing, later going out of their way to say how nice it is for them to be here. “I’m trying to be more polite because I know you guys are guests,” Mae says.
(Story continues below after slideshow.)
At the time of this writing, Mae Rosen is a 25-year-old woman who lives in Decatur, Georgia. She and her sister, Lena, 21, both have autism and an intellectual/developmental disability (I/DD), which results from a rare genetic disorder called Trisomy 8-Monosomy 21. Their first cousin, who lives in Asheville, has the same disorder. Mae’s disorder has also resulted in schizophrenia.
The carriage, loft-style apartment where Mae lives is an independent-living home set up by her parents. Lena, who just graduated from high school, also lived with Mae for a brief time, but she recently did something that led her parents to move her back in with their dad “until she can earn her parents’ trust back.” Lena says, “I have to keep doing that every day.” Both mom and dad, who are divorced but co-parent as a team, come to visit very regularly, bringing groceries and checking on how chores are going. There is also a support staff member who comes once a week for a few hours each visit. She helps with cooking and preparation for the next week. Their apartment is decorated with streamers left up from Lena’s birthday. “I really like them,” she says. “I want to leave them up until they fall down. I think it looks good like that.” Along with the “temporary” decorations, they have an impressionist-style painting of them and their cousin prominently displayed, which was made by their aunt. She’s a leading artist in the Asheville community and was recently on the cover of a magazine in Asheville.
On this day, Mae went to her day program, WOW In-Sync. She likes WOW and the activities they do there—she especially likes playing freeze dance—but her mom, Terri, says they’d like to find a different behavior support program for Mae to help her improve social interaction and employment-related skills. She feels that WOW does not challenge or motivate Mae the way it could: “They did a wonderful job with Mae to a point, but I think she has outgrown them and needs to work on developing greater independence skills,” says Terri. Bob, the girls’ father, explains further: “WOW is a good program, but Mae has gained all she can and needs new challenges. It really was suitable for a while but has limitations.”
What frees up Terri and Bob to think more creatively about Mae’s services is that her Medicaid waiver has finally come through. She was on the waiting list for eight years. Currently, Mae’s New Options Waiver (NOW) pays for community living access, community living support and behavioral support services. Until now, they had less than 10 hours per week in support staff time because they were paying out of pocket. Terri says, “We did manage to get a few folks qualified through this program. But doing so was labor intensive, and staff was not well-supported financially ($9 per hour). So we are often supplemented with out-of-pocket pay.” When the waiver kicks in fully, they’ll be able to hire more staff to help Mae be able to live on her own with a roommate: cooking, cleaning and managing her own schedule of activities with support.
Mae works at Chai Pani, a local restaurant that sells unique Indian "street food" cuisine. She waters plants, wipes down chairs and benches, sweeps the patio and helps out wherever needed. She’s been working there for less than a year. Both Mae and Lena have a job coach named Amy Price, whom they found through the Georgia Vocational Rehabilitation Agency (GVRA). She comes weekly to check in on how things are going, sometimes pointing out things Mae has missed, and then meets with Terri and Bob later to discuss progress, challenges and opportunities. Regarding their job coach, Terri says, “We’re pretty selective. We’ve just been tenacious and stayed on top of it and felt well supported by Voc Rehab.” Amy does “customized employment,” Terri says, meaning that she explores the likes and dislikes, the skill set and the environments where potential clients might thrive, then she creates a job situation from there. This might look like grooming a local restaurant to learn about and explore employing a person with I/DD, or helping an employer create a job that fits their need and can be done by a person with I/DD. Amy encourages both employers and potential employees to think outside the traditional employment box by creating a job situation that works for them—“in their community,” as Terri says—rather than being trained to sort clothes in a thrift shop or box books at a warehouse, like many jobs offered to people with I/DD in larger “workshop-style” vocational programs.
Chai Pani management and staff have been incredibly supportive for Mae. They accept her and are very warm. Mae doesn’t feel included by her co-workers—they don’t invite her to do things outside of work or even talk to her very much—but she does look up to her supervisor. Bob reflects, “That’s more indicative of the global challenge facing people with disabilities than anything specific to Chai Pani.” Mae loves that she can walk to work most days. It’s 45 minutes one way, and a beautiful walk through downtown Decatur. One particular factor in her work relationships is that Mae is constantly thinking about trying to not talk about food, which is hard in a restaurant.
The thing is Mae thinks a lot about health and nutrition, sometimes bordering on obsession or perseveration. She fixates on the nutritional value of food and whether it’s healthy. It comes up as a topic of conversation over and over again. She doesn’t even let herself have the food at Chai Pani while she’s working because it distracts her. From a different angle, she channels her interest in health into an active YMCA membership, where she enjoys swimming several times per week and basketball with a Special Olympics team, and of course, there’s that great walking commute many days of the week. Terri says that she is glad Mae can walk to work: “It’s good that she feels so much a part of the community and goes into all the stores in downtown Decatur, but for a while there, she was having a hard time with sampling all the food when she would stop in.”
For the last week, Mae has been staying at her mom’s house nearby because her team of psychiatrists, dad and mom are monitoring as she adjusts her medications to assess reduction in some of the side effects like weight gain and sedation. Mae is experimenting with CBD (cannabidiol) oil to see if it will help her take less medications and with her overall emotional state. She just started the process last week, so everyone’s curious to see how it goes. Mae says she can already tell she feels better. Her sister, Lena, tried CBD as well, but it didn’t help with her behaviors. Surprisingly, however, it did help with her psoriasis.
As they talk, Lena, who went to her job at a local flower shop today, begins sewing a hole in her riding pants and then putting on her riding boots. She makes sure to show off what a good job she’s doing and that she’s being really careful. She’s getting ready to head out to Stride Ahead, which is a horse therapy program nearby. Lena volunteers there and even helps as a “side walker.” Mae is having a friend over for dinner and to watch a movie, "Coraline," here at home. Her friend is someone whom she got to know in school, and they’ve stayed connected ever since.
Terri has stopped by to check on the apartment and to take Lena to horse riding. “Hi, I’m Terri, the mom,” she says when she walks through the door, and then, looking around, “What happened to all the cushions?!” The girls have moved all the cushions from the futon in their living room into Mae’s bedroom. The upstairs apartment where the girls will one day hopefully settle back in together used to be their mom’s. Now she lives in a condo nearby. It’s been a process of gradual change. Terri lived downstairs for a while, but that was still a little too close by because the girls were showing up on her doorstep every five minutes to ask questions. She needed to be a little further away to encourage their independence. Ideally, they’d like to get support staff to move into the downstairs apartment. “I don’t want to be the roommate anymore,” Terri says regarding the girls’ housing situation, which is still in flux. One of their friends, who is high functioning and drives, is thinking about moving in with Mae.
Terri first learned about CBD when she broke her own arm, and it helped her to heal and have less pain. “It kind of tastes a little weird,” Mae says about the CBD oil. They went to an autism conference and learned from a neurologist and psychologist who has a special cream formula which is applied right where the neck and upper back meet. They just went to Florida to start the protocol with Dr. Ronald Aung-Din, whose system is very specific and includes a four-day appointment involving MRIs to monitor brain activity and how the CBD is affecting it. “It’s really just about improving quality of life,” Terri says as she describes some of the less desirable side effects of the conventional medications Mae takes, such as weight gain and excessive saliva production (“drooliness”). “We all hate that for our kids,” she says.
Mae is considering applying to one of Georgia’s Inclusive Post-Secondary Education (IPSE) programs in the future and has already gone to visit a few. She’d like to find one that’s close to home if possible. There’s a Kennesaw program which includes culinary arts!
What would an ideal job be? Mae would like to be a nutritionist; Lena would like to be a chef.
If given the chance to speak to a legislator, first, they would make sure that person should be at the door because they don’t let in strangers, but then, they’d be happy to talk about their lives. Mae would say how much she would like it if the roads were safe for bikers. Terri agrees that their neighborhood isn’t the safest traffic-wise, even just for crossing the road. Lena would say that she has the right not to be treated specially. In the end, their definition of advocacy says it all: “Standing up for yourself.”
As a mom, Terri would have a lot more to say, not only to a legislator, but to anyone. She wants to talk about the “hidden supports” that go under the radar a lot. According to Terri, GVRA begins trying to provide interventions in the last year of high school, but it’s really not enough nor soon enough. Parents have to start seeking support; developing a plan for social skills acquisition, therapies, job experiences and transportation (learning how to get around on public transportation, walking, or even driving if your child is eligible to do so); finding peer supporters in the schools who can include them for social activities; etc. There is not an agency to do that when kids are in public school. They are mostly focused on academics, not on social skills and support. She hates that the squeaky wheels get the grease. And it’s really hard on parents. “There’s a lot of burnout,” she says, especially because parents and families feel isolated.
Terri says it would be especially nice if her girls could have more neurotypical friends to help them socialize: “It never happened, and I begged for it,” she says, deeply sad that her girls never had neurotypical friends just to go to football games with. “It’s not a naturally inclusive world we live in. We have to create it, all of us.” She says she quit asking because it was so discouraging to have people not want to learn how to engage with her kids. “There’s a pervasive attitude that people just think that, if you have a kid with a disability, you just need to figure it out on your own. It creates this sense of isolation.” As she’s describing all this, Lena interjects, “I hate isolation.” Terri goes on to talk about how parents become the sole supporters and the playmates, and how it leads to burnout, or can even break families apart. To that end, Terri thinks independent housing for people with I/DD should be naturally embedded into and planned for in neighborhoods. She dreams of having another house, just like this one, next door so they can create an independent living enclave, full of people of all different abilities.
As they prepare to part ways for the afternoon, Lena to head off to riding, and Mae to visit with her friend, the girls go out to visit the chickens in their yard and take them some snacks. They remark on how chickens eat everything—their favorite food is chicken, but don’t tell!
Tomorrow is Independence Day, the Fourth of July. They’ll be celebrating it with their father. With so much in flux, the journey toward independence for Mae and Lena hangs in the balance.
* * * * * *
Seven months later, it’s now late January, and lots of things have changed in Mae’s life. Throughout the fall, Mae experienced a decline in her mental health because of the medication adjustments she was starting in July. She began experiencing auditory and visual hallucinations: “She quickly went off balance and got very delusional, quite manic,” says Bob. Ultimately, she had to be hospitalized twice, eventually receiving electroconvulsive therapy (ECT) during her stay.
Mae’s inpatient stay revealed another important component of what is missing in services for people with I/DD—lack of attention in mental health facilities or understanding of the needs of the I/DD population. While the programs may do very well at addressing psychiatric disorders, their staff is often not well-trained or familiar with adults who may function at a different cognitive or developmental level. Likewise, there are no outpatient mental health services that specialize in or can customize for I/DD. For example, Mae learned early on not to participate in the daily inpatient “support groups” where adult patients with depression, schizophrenia and bipolar disorder discussed how they felt and what their experiences were like. After one or two groups, Mae, a typically social young woman, declined participation because one group member told her she talked too much. No one took the time nor had the expertise to help Mae understand how to participate in such a group. They lacked the skills to include her in a way that felt comfortable.
Originally scheduled for a follow-up interview in December, the Rosens were still in the middle of Mae’s mental health crisis and asked to postpone. According to Bob, during that time, even after she was discharged, he still wasn’t sure what Mae would say, whether it would be based in reality or from within her own reality. Interestingly, Bob says that Mae’s personality has changed a bit after this episode. She seems to have, at least for now, quieted her lifelong habit of talking about food all the time, and she’s become quite funny in a way that still surprises him from a daughter who was always so earnest. “She's laughing and cutting jokes about things, and she hasn’t done that before. You know, she hasn't necessarily gotten a lot of humor. But she's been really funny. But it's mixed with you know, not always being in touch with reality.”
Fortunately, Mae has climbed back out of that dark and unpredictable place, and by late January, is back to work at her job at Chai Pani. At first, she didn’t trust herself walking to work alone, so her parents traded off walking with her. As of two weeks ago, she says she feels totally comfortable and is enjoying her walks again.
Lena is doing very well. She continues to enjoy her job at the flower shop where she works and has done a great job at earning back her parents' trust. Until Mae moves back into the apartment, though, Lena will continue living with her dad for now.
Mae and Lena have both begun behavior support services at The Loom School and Core Therapy Services in the NorthLake area of Atlanta. Here, they receive individualized counseling, behavioral support, and job skills acquisition or practice in the community. They work on budgeting, appropriate social interactions with boys or men, helping work in the preschool area with younger children with I/DD, among other activities. Loom is also helping Mae continue to work on when and how she communicates about food, especially so she can better connect with her co-workers at Chai Pani.
Some of the best news is that Mae’s sister, Lena, is close to receiving her own NOW Medicaid waiver. Bob says, “She's getting her interviews and everything in place and should be receiving her NOW award in the next few weeks, I hope. With two of them getting the support... You know, of course we've got to hire and train people, but then we would have enough hours to have a lot of support, which would be great. So, the girls are hopeful they both live independently again. They both liked it.”
Quite honestly, after the last six months they’ve had, Bob says that both he and Terri are ready for a little respite. Even with the award, it’s not going to be easy sailing overnight. He talks about how challenging it is to find, hire, get approved and train people into the support team. It’s almost as complicated to manage that paperwork and process as the Medicaid waiver application itself, and that’s plenty complicated. “You know both of us have master’s degrees, but they do such a horrible job of communicating the waiver program and teaching you how to use it that you really struggle for a while.” He looks forward to the day when everything in their family’s support system becomes mechanical, perhaps even having staff that can help manage the rest of the staff team. Especially because, at some point, he and Terri will age out of being able to oversee their daughters’ care.
For today, though, there’s every reason to be optimistic that, with two Medicaid waivers and Mae’s health continuing to improve, this year will be the year when Independence Day is truly celebrated, in a way that they never have before.
Writer: Rasheera Dopson, Photographer: Lynsey Weatherspoon