Helping disabled 'not a free ride'
For mother of twins, it's love and agony
By Lisa Ryckman, Rocky Mountain News (Contact)
Published October 18, 2008 at 12:05 a.m.
Photo by Photos By Judy Dehaas / The Rocky
Bruce Stahlman kisses his son Eric good morning as he leaves for work at The Arc Thrift Stores, where he is the CFO. Eric and his twin brother, Mark, require around-the-clock care.
Kelly Stahlman puts her Treo on speakerphone to talk with a doctor's assistant about the issues with having a pump inserted into Eric to relax the muscles in his lower extremities.
Sarah Henning, 15, plays tag with Mark, left, and Eric Stahlman, twin brothers, in their Innovative Fitness class at Littleton High School. The twins have severe disabilities.
Eric Stahlman prepares to plug his ear when the drums start playing during the Oct. 10 Littleton High School homecoming parade. His mother says he loves baseball.
Photo by Photos By Judy Dehaas / The Rocky
Mark Stahlman uses his talk machine to communicate with other students in his group during his Intro to Drama class at Littleton High School.
Video: Bruce and Kelly Stahlman have three sons, Jay, a freshman in college, and twins Eric and Mark, both freshmen at Littleton High School. The 16-year-old teens were born prematurely and suffer from cerebral palsy. They are firm supporters of Amendment 51, which asks citizens to provide thousands of children and adults with Autism, Down Syndrome, Cerebral Palsy, and Mental Retardation with critically needed care, through a modest, phased-in sales tax of 2/10 of 1%. Watch »
Morning at the Stahlman home brings another day of heaven and hell.
It's been a long night for Kelly Stahlman, mother of twins Mark and Eric, and now she's up again, getting them ready for their day: cajoling, washing, changing diapers, dressing. She's gone through the same ritual at least three times a day, pretty much every day, since they arrived.
That was 16 years ago.
They were born three months too soon and stayed in the hospital nearly that long. The doctors sent them home to their parents and 3-year-old brother with assurances that there was an 80 percent chance the twins would be just fine.
But they weren't. They screamed 22 hours a day for weeks; Eric's monitor went off repeatedly as he struggled to breathe. Stahlman remembers how grateful she was after two months to finally get four hours of sleep a night, even though it came in two stretches.
"It's physically demanding, it's emotionally demanding and it's heart demanding," she said. "Just because we're parents doesn't mean we can do it all."
Stahlman found herself with a crying baby in each arm, tethered to her phone, looking for help. Must have made 100 phones calls, she says, all of them futile. Then she found The Arc, an organization that advocates for people with intellectual and developmental disabilities. They were at her doorstep the next day with a bagful of information.
It was the beginning of an education Stahlman never wanted but desperately needed: Her sons' lives depended on it. She calls it the "business of disability," and it's more than a full-time job.
There are piles of paperwork: years of documentation of the more than 20 surgeries each of the boys has had to release rigid muscles and fuse bones, records of their condition, back-and-forths with insurers over who would pay what.
At one point, her husband Bruce's company called to say that the family had already used $400,000 of their $500,000 lifetime benefit.
"What are you going to do next month?" they asked.
Mark and Eric were just a year old.
Now, 16 years later, Medicaid helps pay for much of what they need: 15 medications a day, nine different doctors for physical and occupational therapy, speech therapy, vision problems and neurological and orthopedic issues. They both use wheelchairs and are fed through tubes. They require around- the-clock care. Their room is a mini-hospital, with special beds, breathing machines, oxygen tanks, a power lift to get them from bed to bath.
"I never dreamed I'd be a Medicaid mom," Stahlman said.
A transformation
She had always been a conservative Republican who thought of taxes as a four-letter word. That was before Mark and Eric, before the reality of caring for two children with severe disabilities hit home.
Now, she supports Amendment 51, which would increase a sales tax of a fraction of a percent to raise $186 million for services for the disabled. Colorado's spending is one of the nation's lowest, and more than 8,000 are on waiting lists for immediate services.
"It's not a free ride," Stahlman said. "Everybody that I know is doing good work and hard work and trying to take care of their own. But everybody sometimes needs a little bit of help."
As difficult as it is to care for one child with disabilities, Stahlman estimates that caring for two is eight times the work.
Nurse's aide Valerie Apato has been with the boys since they were 3, and she and Stahlman move around the room with the grace of dance partners. Mark and Eric cannot manage the basic tasks of getting ready for school, and because they're teenagers, the morning ritual takes both preternatural energy and patience.
"I thought it would be easier when they got older, but it definitely gets harder every year," Apato said. "They're heavier, and they have more medical needs."
Stahlman gently rewraps Mark's broken toe, the result of a wheelchair accident, and he howls in protest. On the other side of the room, Apato dresses Eric, who has been lying in bed, watching a tape of a Rockies game. He loves baseball, and wants to be a sports announcer, his mother says.
"When he was younger, he didn't consider himself disabled because he could talk, and his brother can't," she said.
Mark has fewer motor skills than a newborn, but he knows how to smile, and he knows what he likes: His face lights up as he watches a video of the Broadway musical version of The Lion King, one of his favorite things. He can operate a speech device, which his mother says has revealed a wicked sense of humor.
"Mark loves life," Stahlman said. "He absolutely loves and treasures every minute of every day."
Not so long ago, children with the twins' disabilities would have been shunted off to institutions and forgotten. Those places have disappeared, though, in part because of people like the Stahlmans, part of a generation of parents who have raised their children at home.
Now, they're getting older, and medical advances mean their children are living longer. In Colorado, an estimated 9,000 people with developmental disabilities live in families with parents or other caregivers older than the age of 60. The wait for adult services can be 15 years or more.
In two years, the twins will be adults.
"I'm raising my children to expect a life," Stahlman said. "And I worry that's doing them a disservice."
Stahlman calls Colorado "Mississippi by the Rockies" because of its spending on services for the developmentally disabled, among the nation's lowest. David Braddock, executive director of the Coleman Institute for Cognitive Disabilities at the University of Colorado, told the Legislature last year that Colorado's expenditures for the developmentally disabled were 73 percent below the national average.
Stahlman understands the people who think it's wrong to rely on government for help. She used to believe that, too, but that was before Mark and Eric. Now, she's on the inside looking out, a change in perspective that she says has opened her eyes.
"I have to believe people just don't know," Stahlman said. "There's this myth out there, it's the one I had, too: that there's something out there for them, for 'those people.'
"I don't know of anybody who works harder than Mark and Eric," Stahlman said. "They do everything within their power to help themselves. They plan on having jobs. They plan on being self-sufficient to the level that they're able. They just need a little help."
Not a Cadillac and a steak dinner, she says. Just a bicycle with two wheels and a peanut butter-and-jelly sandwich.
"God never gives you more than you can handle," people say to her, when they see her out with the twins.
"He did at my house," Stahlman replies.
But she's not angry.
"Part of every day is absolute living hell, and part of every day is absolute magical heaven. The magic is to watch God's grace at work," she said. "Watching who they are and what they do is magic."
Eric is ready to go now, and the bus is waiting. Apato runs a quick comb through his dark hair, and he carefully navigates his chair down the ramp. Later, Stahlman joins her sons at Littleton High School for a fitness class that pairs able-bodied students with disabled ones, and the twins dance in their wheelchairs to the song "YMCA."
When it's over, a triumphant Eric throws his arms around his mother's neck and hugs her as hard as he can.
ryckmanl@RockyMountainNews.com
What Amendment 51 would do
The measure would increase the state sales tax by 2 cents on every $10 to fund services for those with developmental disabilities. The increase would be phased in over two years, increasing the state sales tax from 2.9 percent to 3.1 percent by 2010. Gasoline, groceries, prescription drugs, medical services and utilities would be exempt from the tax.
* The result: The increase would raise $186 million annually to help more than 10,000 people with intellectual and developmental disabilities now on waiting lists for services.
* Who's for it: The Coalition to End the Developmental Disability Wait List
* Who's against it: Nothing organized, but opponents include anti-tax crusaders state Rep. Douglas Bruce, R-Colorado Springs, and Jon Caldara, president of the free-market think tank the Independence Institute.
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October 18, 2008
7:56 a.m.
Suggest removal
StillUndecided writes:
Amendment 51 is the one thing that we are voting on that I think that we can all agree on. We must help out our friends and neighbors that cannot help themselves. I know and have met many people with disabilities or have children with disabilities. They are all good, hard-working people that just cannot do it all alone. It is hard for people to find help. There are wonderful organizations like The Arc (Please Donate!!) that advocate for people with disabilities but they do not have the resources to help everyone. I also imagine that their funding is down given the problems with the economy and the reduction in donations that usually result. This is not a bail-out of people that made poor decisions or some sort of welfare program. This is helping people born with disadvantages get the services that they need and to be productive members of society.
Even the opponents of this measure seem to agree with it in principle. Jon Caldara says that we should just cut waste in other areas. The problem that the recipients of that wasteful spending likely have the money and lobbying clout to fight any attempt to cut them off.
Please vote "Yes" on Amendment 51.
October 18, 2008
9:47 a.m.
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roadstar writes:
I wish Amendment 51 would also cover children and adults with mental illnesses! Most mental illnesses are biological or hereditary disorders of the brain, yet the stigma against people with mental illnesses is worse than for those with developmental disabilities. There are even fewer residential and supportive services out there for adults with severe mental illnesses. BOTH populations need the public's help!
October 18, 2008
10:40 a.m.
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Simmsie writes:
Go Stahlman Family go! You are a champion for us all.
Yes on 51.
October 18, 2008
10:44 a.m.
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StillUndecided writes:
I completely agree. Unfortunately, we have a difficult road ahead of us on that one. I have a friend that is totally convinced that people with mental illness could "get over it" if they just "tried harder". This person believes that psychiatrists are a fraud and that medicines for bi-polar disease and other ailments are worthless. This same person takes medicine for high cholesterol and other problems, but says that those are real problems... Mental illness is just made up by people too lazy or weak to deal with the issues in their life.
Since most insurance limits the number of visits that people get each year for counseling; this view is probably fairly common.
October 18, 2008
12:29 p.m.
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Nursemarieincs writes:
Vote NO on 51. The developmental disabilities communtiy gets hundreds of thousands of dollars each year from the general budget of this state while children with mental illness get nothing. My nephew with a mental illness deserves at least some services but gets none and this article to me says , my child has a developmental disability and deserves more...my nephew doesn't have the chance of a wait list since there are no services. He has been turned down for Easter Seals camps and Adams camps because he has a mental illness, he doesn't have a family support coordinator sicne the state doesn't give family support monies to a child with a mental illness, there is no resite like some counties and organizations have for children with a developmental disability, he has no chance of employment or living support as the state doesn't do this for the mentally ill. chidlren with developmental disabilites have waivers for medicaid and can find services but not a child with mental illness. My nephew needs behavior modification/support and was told by the state He has a mental illness and that is for the DD population. When was the last conference for families dealing with mental illness in this state? Years ago, even workshops are for the DD community leaving out individuals with mental illness. Its time we all say no to 51 until the state equally funds all children with a disability with equality to the level of care needed-my nephew doesn't bathe himself but can his mom get a CNA or the parent paid as the CNA program that this state offers. NO-There are more people with mental illness in this state than a DD and the services are not equitable at all. Children with mental illness deserve a chance that is not a juvenille deterntion or court system program. The advocates need to start advocating for children with mental illness which there appears to be none ion this state. It's time to end my child deserves more attitude in this state.
October 18, 2008
11:13 p.m.
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womanatwittsend writes:
I too have 2 developmentally disabled children. A daughter 26 with Downs Syndrome. And when we could not conceive a second time we later adopted a son who is now 24. It took us a decade to realize our adopted son was both developmentally disabled AND mentally ill.
We will not be here forever and it's important to know that theyred for when we cannot. Please vote YES on 51. You'll never miss that penny added onto evry 5.00 purchase and t will do a world of good.
P.S.
For those of you under the impression that they state simply needs to reallocate it budget, please know these organizations have already advocated with the state and we've been told it's not possible given Tabor. And private donations, while helpful have never and will never provide the funds necessary to help.
October 19, 2008
6:54 p.m.
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DStuart writes:
Amendment 51 helps children and adults with developmental disabilities who have NO services. Yes on 51 helps those who through no fault of their own need help ... not more help, but just help. Please vote yes on 51!
October 19, 2008
8:31 p.m.
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JorAbb writes:
What is most important to remeber is that The Stahlman's are one of 12,000 know families in need of services that amendment 51 provides for. These families need assistance with feeding, bathing, job training, therapy,a home when their parents are gone, and many more very basic needs. If people get job training then they can provide more for themselves and with therapy they will be more able to care for themselves as adults. And consider kids who are up for adoption. What do they do when they have to wait 10 -20 years after turning 18 with no family to help? The government has no back up plan for them. So amendment 51 helps all of Colorado now and in the future. Vote Yes on amendment 51!!
October 19, 2008
11:03 p.m.
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Motherof2beautifulboys writes:
I am also a Mother of 2 Beautiful boys, both with disabilities. If Colorado does not pass Amendment 51 this voting round, then it will be a trickle down effect to all that are affected one way or another by having a disabled person in their lives. The schools in Colorado can hardly provide the "typical" general populous what they need to be successful out in the working and real world, can you imagine what our children with disabilities are receiving educationally and services wise?
The other day my son was screaming and crying because he couldn't be first in line to go out the door to go home at school, so they placed my son in time out in another room feeling that he needs to learn he can't always be first. Yes, I agree he has to learn he cannot always be first at everything he wants to do, but to have a teacher standing in front on my son while he is sitting in a chair bawling his eyes out and in a state of confusion with her arms crossed sneering at my son because he hadn't learned his lesson the first time is not the type of therapy he needs. Most of the children or adults on the wait lists need 24/7 line of sight supervision, they need community outings to learn to deal with being out in public with other people, and list goes on and on a Mile LONG!
With the funds that Amendment 51 would bring in and the help it would offer to so many, it is just good practice and just good humanity all the way around to offer both the young and old on these wait lists a fighting chance to gain some dignity and independence through therapies they are currently not getting. Some of these therapies are considered life saving measures to the people on the wait lists.
So the next time you are out in public before this election and you see a child that looks like they may be acting like a "brat", or an adult that looks somewhat dazed or confused remember this, that may be one of 12,000 people that is on the wait list to get services they so desperately need to help them deal with their overwhelmed sensory system that just cannot even handle going out in public because it is just to much. With therapy, they can get help and go on to lead some semblance of a life they didn't choose.
October 20, 2008
12:24 a.m.
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deb writes:
My son is 20 years old. He'll graduate in May 2009. He has great supports that the school district provides under the Federally mandated IDEA. He has a job coach through the transition program that the district contracts with our local SILC (State Independent Living Center) and works at CSU in the greenhouse. He so looks forward to going to work and has a meaningful life. When he graduates from high school...these supports will no longer be available *UNLESS* the supports are provided through the Adult Services Programs that come from the services under the Colorado Division for Developmental Disabilities and the Single Entry Point...Community Center Board in our county or region. Each of these CCBs have waiting lists. My son will sit at home in his wheelchair and lose the skills he's gained over the years in school. What a waste! I have dreams for my son to continue working...and that is his dream, too!. He would not be able to continue this job unless he has the support of a job coach.
Please support my son and the more than 12,000 others who need these supports to be safe, successful and lead meaningful lives.
The only way it will happen is if you vote YES on 51.
Thank you so much!
October 20, 2008
8:17 a.m.
Suggest removal
Mom2 writes:
We worry what will happen to our daughter if we shall die. My daughter will be an adult in two years and there is no services for her. There is years of waiting on a waiting list.
I am getting older and my health is not good.There is no safety net for my daughter.
Please vote yes on 51. Take the worry away that my daughter will have someone to care for her after I die.
October 20, 2008
10:46 a.m.
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ActualThinker writes:
I'm in the same boat as many of the posters already, we were on the waiting list a few years (and had to fight to get added to the waiting list a few more even though we were clearly eligible due to my daughters disability). The co-pays alone for the ten different specialists she had and therapists were very tough. It's hard enough when you are making less money because of all the time you miss work taking kids to these appointments, let alone shelling out $25 co pays several times a month. People don't see just how intensive it is (and yet our greatest fear as parents is that one day we wont have any of this stuff to worry about, that having these problems is a good thing because it means our child is still with us).
So rather than rehash my story since there are enough compelling ones on here to begin with let me address the main argument I've seen against amendment 51. That the government should cut reckless spending elsewhere and pay for this waiting list that way. You know what? You are absolutely right. The government should do that. But this has been a problem for years, and the government hasnt' done anything about it, and if this doesnt pass they aren't going to either, (if anything it hurts that argument more since they can now show that the people don't see it as a high priority by not voting for it). So since the govt wont make the changes why punish these families that have suffered enough over a nickel for every $20 you spend? You aren't sending a message to the government to cut the wasteful spending you are sending a much bigger message to the mother of the child struggling to get the help she needs because you dont want to pay an extra penny on your value meal. So please keep those people in mind when you vote, you never know when it could be you asking for help. Us parents raising these kids never thought it would happen to us either.
October 20, 2008
1:33 p.m.
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nanam writes:
This is a reply to nuremariens. I am a parent of a child with high functioning autism and a mood disorder. I am denied services for my child constantly. He is on the wait list at Denver Options(it may be years before he receives services). Mental health agencies such a MHCD deny services because of the autism. Like your nephew my child needs behavior support and constant supervision. My child has been in juvenille detention and continues to be in the court system(about five years now). I will continue to advocate for my child and others in the same situation. I would encourage you to do the same for your nephew. I will vote yes on 51 despite not being able to get services for my child. You should end your selfish attitude of if I can't get help, you shouldn't have any either. Vote yes on 51!!!!!