I wind my car through the idyllic town of Littleton, CO. I am following Kelly Stahlman in her white van as she leads me to her house. Van is an understatement. This is a vehicle of giant proportions. She could be delivering furniture or milk or small horses. The license plate has the universal small blue figure of a person in a wheelchair. This is the smallest vehicle she can have while fitting her family and their equipment: an 18-year-old, a pair of 15-year-old twins with Cerebral Palsy, a husband, and two electric-powered wheelchairs.
I pull my car into the driveway behind hers and she asks me to wait outside a moment. She pokes her head into her house, “Eric, are you decent? We’ve got company!” She gestures for me to come in and I enter a room that is a hybrid of hospital and bedroom. Two large wheeled beds occupy separate corners of the room. Each is allotted a flat-screen TV. I am introduced to Eric, who is lying in bed watching the Disney channel. He has spiky black hair and a plastic oxygen tube across his face. He scrapes his eyes away for a quick hello.
“Have you been rolled recently?” Kelly asks her son. He doesn’t answer, so she consults his extensive chart. Five months ago Eric was able to use a walker to travel from bathroom to bedroom to chair. However, when he underwent spinal surgery last April, he came out with an additional spinal cord injury, rendering him bed and chair bound.
The room is equipped with everything Kelly, her husband Bruce, and the various caregivers and nurses need to move and medicate the boys. Along the ceiling is a metal track, from which hangs a chair of sorts. That track leads from bed to bed to the adjoining bathroom: over the toilet, in the shower, and over the bathtub.
“Get in and try it!” Kelly says to me. I look at her as if she’s just asked me to bungee jump off the house. She nods enthusiastically and guides me into the lift. I duck under and come up through the plastic sphere that tucks under my armpits. One by one I lift my legs and she puts a plastic band around each leg, just above the knee. I feel like a sack of potatoes. I hang about four feet off the floor as Kelly pushes me around the room and into the bathroom. I hold back the urge to throw my hands up and yell, “Faster!”
“Isn’t that cool?”
I have to agree, it’s very cool. She leads me through the house. The cleanliness is indicative of two working parents with three boys—a little unkempt. Lived in. There are pictures covering the fridge, forming a messy mosaic. Kelly points most of them out—many are family friends, some are caregivers or nurses. She tells me that many of Mark and Eric’s childhood friends have gone on to become nurses, caregivers, and special education teachers.
I chat with her oldest son, Jay, about visiting colleges; Kelly and Jay are about to embark on a weeklong whirlwind of college tours from Pepperdine to Seattle University. I ask him what growing up with Mark and Eric has been like. “It’s all I’ve known. They’re my brothers and they’re important to me.” He looks down as Sandy, their service dog walks by. The dog smacks his lips with contentment. A panicked look comes over Jay’s face, “Oh no, Sandy, you just ate my Arby’s, didn’t you?
I follow Kelly to the living room, where Mark is watching TV in his chair. He smiles at me. Unlike his twin, he can’t talk. Cerebral Palsy has damaged his vocal cords. He is just learning to relax his voice. Kelly asks him to say hi. He tilts his head back, opens his mouth and soft, indeterminate noise comes out like a shy singer warming up. Much of the time, Mark operates a voice augmentation device to communicate. Using a large round yellow button at his left cheek, Mark can say almost anything he wants. He also uses this button to change the channel, rewind the VCR, turn the volume up or down, etc.
He is watching a home movie of his Make-A-Wish trip to Disney World four years ago to see the Lion King performed live. He wants to show me his favorite part, so he rewinds and finds the place on the tape. His face expresses an honest, open joy that only a child can possess. His legs shake with excitement when the tape comes on to three characters singing “Hakuna Matata,” to Mark and Eric after the performance. He looks at me to make sure I’m excited too. Kelly leans over to me, “he watches this about 20 times a day. For the past four years.” She points her finger into her mouth in a “gag me” gesture and we laugh.
Preceding the visit to her house, Kelly and I had a chance to sit down and talk about her life and work and the day-to-day:
DB: Tell me about the work that you do.KS: I would tell you that I have two jobs because we run a small business out of our home to support the children and all of their needs. My work comes out of “necessity is the mother of invention.” I had to learn how to navigate the system in order to be able to sustain and provide for Mark and Eric, and to learn what I needed to know to set them up for success.
I think in terms of the business of disability versus being a mom and loving on my kids. I think about the funding and the staffing and the supplies and the routine and the schedule and the coordination of home and school and community and continuing to build skills and then loving on my kids and doing basketball and baseball and sports.
That really is a full-time job. By the time you do multiple appeals for private insurance and denials for occupational and speech therapy, by the time you coordinate the payment of private insurance with the wraparound payment of Medicaid for durable medical equipment, hospital beds, suction machines, wheelchairs, it becomes overwhelming. The therapies are the biggest piece and the most important and the most difficult to coordinate.
There are things that insurance won’t pay for because they’re children. They won’t pay for diapers because they’re children. They won’t pay for custodial care; which is care typically delegated to Certified nurses aids, but parents are supposed to take care of their kids, so you don’t need custodial care. Therefore, I need to be able to stay up 24 hours a day. So we have a Wrap-Around—which is wonderful that Colorado has this Medicaid program. It’s unfortunate that there’s other children and families with disabilities as complex as Mark and Eric’s that don’t have access to children and adult services.
So, for my work, I work for Family Voices and I advocate for children’s health. We help families: anything from mild asthma to profound autism; anything lasting longer than 12 months. We do pediatric and adult services across multiple systems: private health plans, public insurance, waiver programs for home and community-based services, long-term care, and we help assist families when they get stuck. We have a private insurance specialist who helps families write appeal letters, as well as assist families in appealing to Medicaid.
In fact, we just won a claim for elevator lifts in a wheelchair for height adjustments so you don’t develop Kyphosis from looking up all the time. My job specifically is public policy. I coordinate with other organizations and bring the kids’ perspective to the conversation. Generally health care is an adult model that you retrofit onto the kids. And kids are not little adults. A two-year old is very different than a 10-year-old which is very different than a pregnant teenager with a two-year-old. So that is what I do.
DB: What obstacles have you faced?KS: Where do you want to start! When the kids were first born they were sent home even though they were one and two pounds, and in the intensive care nursery for months. They were sent home with the doctors saying, “Everything is going to be just fine.” And it wasn’t. We went home on oxygen and went home on heart monitors for nine months. We went home with kids who couldn’t sleep. They were neurologically disorganized.
Mark and Eric both had reflux. Mark was in chronic, terrible pain, which is why he screamed 22 out of 24 hours of the day. Eric didn’t scream, he just stopped breathing because his reflux was going up his esophagus and down into his lungs. That occurred for two years before it was diagnosed, which is why he is still on oxygen.
So part of it was identifying there was a problem at all. We kept thinking they would outgrow it. People say, “Oh, they’re in denial.” Denial isn’t all bad because it lets you get through the day and it gives you hope. There’s a quote on hope, “the absence of hope is despair.” You have to have hope that things will get better with or without disability.
First you start hanging your hat on, oh they’ll be cured. About the age of two is when you figure out that disability doesn’t define the love of your child. You love your kid. It is a lot of hard work. There’s a book called Special Parents, Special Child in which Anita Wagner says, “I love my kids, I hate this life.” I’ve gotten past hating the life for the most part because it’s a long life. And there’s not much sleep. It’s been really critical to separate out the business of disability from loving my kids.
In the words of Aldous Huxley, “facts do not cease to exist if they are ignored.” The struggles started when they were little and you figure out that it’s just beginning. And you grow into it. I’ve had incredible mentors. Just incredible. Carol Meredith works with the Arapahoe child network and is now with the Arc of Arapahoe. I think that she saved our lives because she figured out what dire straits we were in and took it through a complex mediation with the Developmental Disability system and the Department of Education in early childhood. Then she identified that the needs of Mark and Eric were incredible complex, and the needs are not the same. They have complementary facets of Cerebral Palsy.
The barriers are absolutely overwhelming, and frankly, they’re only getting harder. I just registered a complaint with the Colorado division of insurance about our health plan where I experienced intimidation on the front end and threat of retribution and a special investigation if I pursued. And these are claims which were prior authorized. So, I’ve got that in process and I’m moving forward. Part of it is I don’t have the option of going away quietly, because the price is too high. We’ve had wonderful mentors and my hope is that I will be able to do that for others.
DB: Have your experiences as a caregiver changed your perspective on life?KS: Oh absolutely. I was raised in a family that really valued individuals with disability, but really thought it was too hard on the families. Of course, it was a different generation as well. I watch Mark and Eric give gifts to people by their presence every single day. They walk into a room and influence it. They allow people to shine in how they interact with them. Whether it’s the teachers, family, friends, connections. I was completely naïve. I’ve had an incredible growth curve. I’ve went from, “that’s not worth it, that’s too much,” to “normal is what you do every day.”
DB: Do you feel that society has changed in the way they accept your boys?KS: Justin Dart is the father of disability civil rights. He advised five presidents on Americans with Disabilities. He gave a speech called, “Justice for All.” He spoke eloquently about the sense of when you feel you’re not making progress, when you’re buried in the fight, and entrenched in battle just to get very simple things in place. We are still making progress; we are way ahead of where we were 50 years ago; way ahead of where we were 20 years ago, and we’re even way ahead of where we were 15 years ago.
Funding is going to change that, I think there’s going to be a whole lot more educational engaging of America on disability overall. Also, another friend of mine, Eileen Forlenza, says, “we are out in the world; we just forgot to tell the world we were coming!” There’s a ton of work to do. The link from disability to poverty is criminal and destructive. Rather than having self-sufficiency with medical support, we operate on a spin-down model to poverty. There’s tremendous work to do.
DB: Do you try and protect your kids when you’re out in public?KS: We invite that, actually. Number one, with twins, it’s going to come up. So part of it’s the twin thing and part of it’s the twins in wheelchairs, and then I have my older, typical son. When I see someone staring, I say, “Come and meet Mark and Eric!”
We have a service dog that we’ve had for 10 years. And that provides an outstanding social opportunity. She’s a companion dog. Mark and Eric aren’t able to direct the dog right now. I use the dog as a social network; before the mothers can say, “don’t stare,” the kids are like, “oh, look at the dog!” And that leads them to ask questions. And then we point out what’s different and also, what’s the same.
DB: What gives you the greatest satisfaction in your life and what you do?KS: My family. It’s very easy to get wrapped up in the advocacy or the policy or the issues or your most urgent need and the barriers you’re facing. It’s very easy; there’s so much opportunity for anger because we get beat up all the time.
But all of that stuff doesn’t matter if it doesn’t affect the daily life of my kids and of our family. So the greatest satisfaction is our family. When Bruce and I were having another child after Jay, we had the discussion that we had more room for kids in our family, and now the joke is, we had no idea how much more room! And you just keep making it. I joke with Mark and Eric, “it’s a good thing you’re worth it!”
DB: You talked about mentors, do you have heroes?KS: Patty McGill Smith. She was in Time Magazine when my kids were two. The article was called, “Mothers of Invention,” it was about moms with children who had complex needs who went out and made changes and left a legacy for the next generation.
Julia Beckett and Katie Beckett. Julia passed the Children’s HCBS waiver, a Medicaid waiver for children to live at home with their families.
Sally Maxi is a mother I knew about who brought Family Voices to Colorado. Her son just passed away last year at nineteen. [pauses] I’m tired, I don’t usually get weepy.
I knew about her because she was helping my husband’s co-worker’s family before we ever had Mark and Eric. So when I had Mark and Eric, I knew who to call.
Sandy Hannan is a mom whose daughter was a year older than Mark and Eric who passed away at thirteen.
Carol Meredith from the Arc of Arapahoe Douglas and Christy Blakely, my boss at Family Voices.
I meet new heroes every moment of every day. People who aren’t related to disability, but are able to make all the connections. Molly Mullervy is Mark and Eric’s best friend since kindergarten and still keeps in touch. Our aids, Valeria Apato, had never worked with individuals with disabilities, she came to do CNA work and she’s been with us for twelve years. Kari Hoffman, who said yes when Eric asked her to homecoming. Also, David Mann, who came to the capitol and testified on behalf of mental health for youth.
DB: Are there any disability organizations you want to share?KS: One of my gifts is that I connect people to each other. So now, all of a sudden, I’m on a bunch of boards. I’m on the board of the Colorado Consumer Health Initiative and I cannot believe what an honor it is! I'm acting as president right now. The Colorado Consumer Health Initiative had a vision five years ago, to coordinate all health organizations and create a unified consumer voice in Colorado. Rather than individual organizations or diagnosis groups being in a situation of opposition, trying to get the same health dollars, the Coalition works on behalf of all consumers, regardless of organization or diagnosis.
CCHI now facilitates and coordinates strong public policy for all Colorado residents - looking at the broader picture of health care reform. Their mission is "access to quality affordable health care for all Coloradoans." I've learned so much through this organization!
My all time favorite of course is Family Voices of Colorado.
Also, the Arc chapters are critical. I’m board President of the Arc of Arapahoe Dougas and on the board of The Arc of Colorado.
I am on the Colorado Alliance for Health and Independence board which is a new "disability care coordination organization" just getting launched. We are modeling our pilot project after the Commonwealth Care Alliance in Massachusetts, coordinating physical and behavioral care for persons with disabilities. This will be case management that actually works! Coordinating care, not only as cost-savings over the long-haul, but keeping people healthier and happier. There is amazing work being done.
DB: What advice would you give to new mothers in your situation?KS: Hope for the best and prepare for the worst. Reach out, even though it’s a lot of effort. It’s very easy to become isolated. Connect with someone and find the person who has the information that you need and keep connecting, keep figuring it out. It may take effort and work, but our kids are great, great kids.
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