From his elevated bed at Methodist Children’s, Rafael is vacillating between dreams of becoming the first wheelchair-bound NBA coach and the compounding reality of the genetic disorder that has landed him in the hospital with pneumonia for the second time in a month.
A week after another terrifying nocturnal ambulance ride in which he felt his lungs and heart nearly fail, Rafael Garcia is up and picking out the meatballs from his spaghetti plate with typical childhood partiality. A speech therapist leans in to observe each chew and swallow.
The hospital is ready to discharge the 12-year-old, whose health has been slowly deteriorating since a spinal-fusion surgery performed more than a year ago. But the family won’t leave — not until they can get a homecare nurse under contract.
“I will not put my health at stake for you all to do more harm to my son,” his mother Yvonne tells a nurse on duty, her eyes white with anger.
Even when offered Spurs tickets by the hospital doctor, Rafael declines discharge. Still, his impending December 15 birthday and Christmas pull on him.
“I do want to go home,” he explains. “But imagine this, on my birthday I’m happy as a chick and I’m better. Now I go back, now get sick again, come back in again, go through this again, and having to spend my birthday and Christmas in the hospital.”
“All because they won’t get what he needs, having the continuity of care,” Yvonne interjects from across the room.
The family left Methodist after the 2007 surgery with a referral for home health care, but neither agency showed up. None came to fill the gap. That left Rafael’s 23-year-old sister Arlene and his epileptic mother Yvonne to cover the 90-plus hours a week of at-home medical care ordered by the child’s orthopedic doctor after the metal rods were stitched into his back.
It’s been a hard two weeks, involving fights with nursing staff over the hospital’s failure to provide a shower chair or orthopedic wheelchair. Within a week of admission, Yvonne suffered an epileptic seizure, her condition the result of a past physically abusive relationship and one too many brain batterings.
When rested, Rafael echoes his mother’s commitment to stay in the fight. But rest is hard to come by in this busy hospital environment. When the end of the day comes, the boy tucks his head into his chest and cries. “I just want to go home. I just want to hold my dog.”
Across the country last week in Philadelphia, state leaders from around the country were lining up to paw newly anointed President-elect Barack Obama at a gathering of governors. With Obama’s team constructing an economic recovery plan for the nation, governors were already dreaming of bailout crumbs spilling from their new master’s table.
One that refuses to ask for assistance is Texas Governor Rick Perry. Entering 2009 as one of the few state leaders with an economic surplus, Perry has sought through newspaper editorials and television appearances to inform all who would listen that Texas is just fine, thank you.
Only, Texas — if its overall health is gauged by the quality of human lives rather than dollar reserves — is far from fine.
“There is actually a crisis situation in Texas,” says Dennis Borel, executive director of the Coalition of Texans with Disabilities.
According to the U.S. Department of Health and Human Services, Texas’s commitment to health services is “very poor.” Home health-care services in the state rank “worse than average” in eight categories based upon patient improvements in respiratory function and mobility, and the rate of hospital re-admissions.
As many as 82,000 residents languish on state assistance rolls, waiting to see if they qualify for medical assistance. Those with the worst disabilities may end up waiting for up to nine years for help to which they are entitled to by law, according to a recent report of the Center for Public Policy Priorities. As many as 800,000 kids — representing half of the state’s currently uninsured children — are eligible for help through Medicaid or the Children’s Health Insurance Program but aren’t finding it. Many individuals die before ever receiving care they qualify for, according to State Senator Judith Zaffirini, a longtime champion of improving and expanding the state’s miserly health-care commitment.
The Laredo senator worked to net $107 million in 2008 to reduce the list by 14,000 — a list whose very existence she terms a moral failure.
“I’m delighted to have $107 million for the waiting lists currently. It’s better than zero. But, frankly, it’s just not good enough,” Zaffirini says. “I believe that the willingness to knowingly accept the waiting lists for so many people is immoral. Nothing more and nothing less: immoral.”
Congress, Perry intoned on Fox News last week, is “taking our country in a very dangerous direction, to this bailout mentality and the idea that we need to look to government, rather than ourselves, for solutions.” Of course, for many problems there is only a government solution. Following the coldest of free-market models, it could be said that Texans are getting what they pay for when it comes to our most vulnerable. State spending on children enrolled in Medicaid ranks 33rd in the nation. When it comes to the elderly, that ranking sinks to the slot number 48. So no surprise that we suffer the results of a nursing shortage: high turnover and low morale among the home health agencies.
That situation is largely, though not entirely, to blame for Rafael’s unraveling. It doesn’t explain the past year and a half. It doesn’t account for dozens of agencies, many of which continue to advertise their services, refusing assistance.
Rafael suffers from spinal muscular atrophy, a degenerative genetic disorder that increasingly limits the ability of the brain to control muscle function. He was expected to die by the age of 10. Over the years, he has watched his legs whither beneath him, his organs contract, and his lungs weaken.
The daily-care log prepared by Yvonne is seven pages in small type, a battery of pain-management regimes, wound care, physical repositioning, diaper changes, cleaning of appendix and stomach tubes. There is blood pressure and respiration to watch, inhalation therapy, and the stretching of his legs, weakened and bowed by disuse and continued muscle constriction.
He’s seen scores of physical therapists and homecare nurses through the years. Many became friends; some became something else entirely. In the months leading up to Rafael’s surgery, Yvonne caught a home health worker asleep on her couch. She filed a complaint with the state and shortly afterward the fulltime nurse that had been working with Rafael was promoted and moved. When the company failed to replace the nurse after several weeks, the family was forced to look for help with another agency.
The next group, Pyramed Health Services, began the intake process in the summer of 2007, but ultimately decided they didn’t have the staff to provide for the family.
In the two months they were with Maxim Home Healthcare, Yvonne trained 10 different nurses in Rafael’s daily regime. During this period, Rafael says he was molested by one of the nurses. He described to me the male nurse who used to try on his clothes, and an older female who did things to him he still has trouble talking about but whose face he “will never forget.”
When alerted to what the family has come to refer to as “the incident,” Yvonne rushed to the local police substation. No report was taken, she says. Instead, she was referred to Child Protective Services. Maxim representatives refused to come to Yvonne’s house when she phoned them in a fury, saying that they were in the middle of being audited and didn’t have time to respond. To cap it off, the family’s counselor from Baptist Child & Family Services (who, along with Rafael’s primary-care physician, would not comment for this article), advised Yvonne to “leave it to God,” to “leave it alone.”
Not content with that, she filed a sexual-assault complaint with both the Texas Department of Aging and Disability and Child Protective Services. To her knowledge, no criminal investigation has ever been launched. Rafael was left bereft of professional care once more.
John Hancock, senior health-care recruiter for Maxim Healthcare Services in San Antonio, said federal health-care privacy rules prevent him from confirming whether Rafael was ever a client, but, he added, he had no knowledge of Maxim ever being cited by the state for anything related to the reported sexual molestation.
Rafael Garcia, in his own words.
Rafael’s spinal-fusion surgery in October 2007 was an incredibly painful ordeal for the child, orthopedic surgeon Dr. Earl Stanley said. It’s a common procedure for children struggling with Rafael’s condition. Due to the failure of the various home health groups to provide needed post-op occupational and physical therapy, his recovery was less than optimal.
“At this point,” Dr. Stanley wrote a month after the surgery in a follow-up note to Yvonne and Rafael’s primary-care physican, “the biggest problem is regaining some of his services. There has been a significant delay, which I think is going to affect him adversely, if we do not get them started.”
Lifespan Home Health accepted them several weeks after Rafael was discharged, but Yvonne says she caught the company billing Medicaid for three weeks of services that were never provided. She reported them for fraud. They, in turn, dropped her as a client.
Rafael has now gone more than a year without home health services. Assisted by Peter Vallecillo of the Southwest Institute for Poverty and Civil Rights, Yvonne has requested help from dozens of regional home health providers. One after another, they have declined, citing a lack of staff.
“Health-care providers have an interwoven communication with each other,” Vallecillo said. “My perception is that somewhere down the line she was probably blackballed.”
Rafael’s teacher, who spends about five hours each week with the child at the family’s northwest San Antonio apartment, says over the past year she has seen the family drained of energy as the list of refusals has grown.
“They are up through the night. I see this family exhausted all the time,” she said.
The health agencies also probably aren’t used to being challenged about how they perform, as Yvonne does regularly, she said. “I don’t think they hear that a lot. They just know she’s ‘not cooperating.’”
Yvonne even fought the school district over its plan to have two therapists evaluate Rafael on the same day. She wanted them to come one at a time, with time between for Rafael to rest. She said the physical stress of back-to-back services would be too much for her son. In the end, she assented to the visit on the district’s terms. It was only a day after the visit that Rafael contracted pneumonia and was rushed back to Methodist.
Children with spinal muscular atrophy have typically died in early adolescence. These days, with good medical care, they can live into their early 20s. So can Rafael expect to tack on another decade among the living, potentially achieving his dream of becoming a basketball coach?
It’s conceivable, says Dr. Stanley — “if we can keep his lungs healthy.”
Home care would be “tremendously helpful” to Yvonne, he said, who is increasingly challenged by Rafael’s weight. The assistance won’t necessarily extend Rafael’s life expectancy, but there’s quantity and then there’s quality.
“If you can keep him out of the hospital with pneumonias, you can prevent tissue damage by getting him moving … it’s a quality-of-life issue,” the doctor said. “His lungs will drain better, some of his muscular strength will be maintained, although it’s inevitably getting worse.”
Diana Barrera knows something about the challenge of caring for disabled kids. She lost two children to spinal muscular atrophy. Her second, David, died in 2004 at Rafael’s age. Now a child-health advocate, Barrera sees in the Garcia’s struggle a reflection of her own experiences. But from Yvonne, she says she is also learning about the range of rights guaranteed disabled children under the federal Americans With Disabilities Act and an assortment of state laws — things she didn’t understand completely when she was fighting for services for her own children.
“How many others have gone through this and did not get taken care of?” she asks. “A lot of the parents, to tell you the truth, they have language barriers — and the ignorance, because you don’t know any better. They don’t know if they can be asking for these things or ‘What else can I do for my child?’ because they are so busy taking care of them.
“I admire Vonni … She fights. And she knows how to fight, too.”
Dr. Stanley agrees there are many people in San Antonio and around the state who are likewise being neglected.
“I think that this happens more often than not,” he said. “There’s only so many people to go around, there’s only so much money to go around, there’s only so much reimbursement. That’s the way it is … It’s not an uncommon story.”
Dennis Borel is prone to asking an outrageous-sounding question when he talks about the treatment of the disabled in Texas.
“In Texas, what do we value more, the dignity of a human being or a cheeseburger? The answer is a cheeseburger, because we pay people more to make a cheeseburger than we do to long-term care workers.”
The state-federal funding for Medicaid in Texas is a 60-40 split: For every six dollars the state commits to the program, the federal government tosses in four. Currently, the joint payment for long-term care workers breaks down to roughly $10.86 per hour for community-based alternatives such as home health care. That $10.86 must pay the hourly wage, but it must also take care of payroll taxes, social security, and the money needed by these various private agencies to coordinate program services. By Borel’s accounting, that brings the paid hourly wage beneath that earned by an experienced burger-flipper.
Here’s Yvonne’s riddle: What do you get when a city’s entire state-regulated, privately operated home health community turns its back on your child? The answer, of course, is nothing.
The Department of Aging and Disability apparently sees lack of staff as an acceptable reason to turn down an applicant, despite the pounds of complaining paperwork Yvonne has submitted to the likes of Texas Governor Rick Perry, U.S. Representative Ciro Rodriguez, State Representative Joaquin Castro, and State Senator Leticia Van De Putte. Yvonne insists state law maintains that if one private health-care group cannot provide the requested services, their managers are bound to assist in finding another business that can.
Worn down by his second visit to Methodist Children’s inside a month, and two weeks waiting in his hospital bed for someone to take on his case, Rafael decided to unload his frustrations on his doctor. He doesn’t believe anyone is trying to help him, he says. Apologizing for his language, he tells the doctor he is “pissed off.” That if help isn’t found in a week, he will no longer be the man’s friend. While the innocent’s rage brings repeated smiles to the doctor’s face, Rafael wants his frustrations understood. To get his point across, he repeatedly races his heart over 150 beats per minute to set off his monitor’s alarm. “I can do that whenever I want,” he says, his face flush, eyes challenging the doctor over the rims of his glasses in a desperate staring contest. “What are you going to do to help us?”
Dr. Kelly Smith, who failed to return repeated calls for comment, takes the emotional exchange as an opportunity to turn the tables: He says he agrees that it obviously isn’t safe for Rafael to return home until a homecare nurse is found. Therefore, they won’t be going home — under hospital order — until that day.
“I’ve never seen anyone have as much trouble finding and maintaining home health,” he says, in what may or may not be an intended jab at Yvonne. Three days later, Yvonne and Rafael are being visited by Child Protective Services. It is unclear whether Dr. Smith or someone higher up in the hospital administration reported the family. The caseworker asks if Yvonne has ever denied home service. Yes, it turns out, when a group would only consider their case by bringing five nurses out at a time to inspect their home conditions. That, she said, would have put Rafael at risk. It also comes out in the interview that Yvonne has refused to take the antidepressants prescribed to her three months ago.
For her part, Yvonne simply doesn’t believe San Antonio’s home health community could be so overtaxed that there is simply no acceptable help for Rafael. She considers the call to CPS as nothing more than a move to punish her for speaking out.
“It’s not a lack of staffing. It’s called discrimination,” she says. “It’s called retaliation. It’s because I’m sticking up for my civil rights.”
While their fight from Room 389 continues, Rafael is firm in his commitment to living through it all and, more importantly, growing as an advocate for other kids experiencing similar hardships.
“I worked too hard to just give up, because what I see are all these children,” he tells me. “Yeah, sometimes I don’t feel well, but I just have to take a step back and rest and start over.
“I’m not going to give up until I cross that stage, hold up that NBA trophy with my team … and carry that trophy high, and then I say to everybody, ‘Dreams can come true.’ I’m not going to stop until I achieve that. Not even if `in` a hospital bed, not even if I’m in a deep, deep coma, say. I’m not going to give up.” •
Learn more about the state of healthcare in Texas.
Texans waiting for health qualification assessments at the Texas Department of Aging & Disability.
What work remains to fix the system? Center for Public Policy Priorities
What does a healthcare crisis look like? See Houston. (USA Today)
Health Care for All Texas
The Long Wait: Lack of funding creates backlog for state mental health services.