Cutting the Healing

The emotional triage performed by therapists for the severely disabled is being eliminated by budget cutbacks

"What was growing up like for David McClain?"
The questioner, a woman with a pad and pencil in her lap, seems in no hurry for an answer. Silently she waits as the 30-year-old man in the wheelchair across from her writhes mutely in his seat. There's a long, slender ribbon of spittle dripping from his chin. The ribbon sways and lengthens until it touches his lap. With the back of one sharply inward-bent hand, he absent-mindedly smears it into his red beard.

Finally, in a voice so thick and distorted that it seems to form not a string of words but a single continuous, wheezing groan, he says, "It was like a mushroom."

Gently but firmly the woman prods him to explain what he means. "A mushroom? How so? How was it like a mushroom, David? What was it that made you feel like a mushroom?"

"Nobody ever told me anything," he answers. "I was always in the dark."
Still the woman persists. "Why was that? Who was it that kept you in the dark?" She's pushing the man, pressing him to reach deeper into the past, to grasp its pain. Her tone remains calm and friendly, but her body is tense as she sits motionless in her chair. For Ellen Savits, a Coral Springs psychotherapist with a unique specialty as counselor for people with severe physical disabilities, the session has reached a crucial threshold.

"My mom and dad," McClain finally replies. "They kind of sheltered me. I couldn't do nothing for myself. When I would ask my dad if I could help with the chores, he said, 'Don't worry, I'll do it for you.' Sometimes I used to sneak into the bathroom at night to try to clean it."

And suddenly McClain needs no more prodding, because now the dam has burst and he is launched on a reminiscence of childhood. He talks about his parents' smothering overprotectiveness. He also talks about his love for them, especially his mother, a talented amateur painter who taught him to draw and who brought out his own considerable artistic talent. "She would draw a cat, and I would draw a cat, too," McClain recalls with glistening eyes. "But hers was soft... more ladylike."

When he has finished, Savits softly guides him back from the depths of memory to the present moment. "David, now let's talk a little about some of the things you'd like to change in your life."

Well, there's a lot that he'd like to change in his life. He'd like to be able to walk and talk and live like an able-bodied person. But that isn't going to happen. There's no cure for cerebral palsy on the horizon.

So he concentrates now on things that he does have the power to change. Since the deaths of his parents eight years ago, McClain has been plagued by fear and self-doubt, traits that he recognizes and loathes but somehow hasn't been able to abandon. Without someone around to tell him what to do and make decisions for him, he says he feels lost. "Somehow I'm holding back," he says. His plight is reflected in his recent inability to finish a painting. "I sit in front of a blank canvas, and my mind just goes blank."

McClain's problems came to the fore last year, when he moved out of the group home he'd been living in since his parents' 1991 deaths and into a subsidized apartment. On his own for the first time in his life, he's found freedom hard to manage. Even the simple task of grocery-shopping has had him perplexed to the point that he's felt compelled to check in with his home-living coach, Debbie Isaza, before putting an item in his cart. "Hey, it's your money, David," Isaza remembers telling him repeatedly. "You shouldn't be asking me to make these decisions for you." It was Isaza who recommended that he seek therapy.

He thinks that, in the nine months he's been seeing Savits, he's made a lot of progress toward developing the assertiveness and confidence he'll need to get along in life. Still, he thinks he has a long way to go. "I have a tough time with authority figures," he says. "I still hate to make waves."

Progress or no, this counseling session could well be his last -- with Savits or anyone else. Last year's state Medicaid reform legislation included a small provision declaring that the program would no longer make copayments toward treatments covered by Medicare but not by Medicaid itself. Since Medicaid doesn't cover psychotherapy (although Medicare does), the new law has cost Savits an average of $6 per session. This may not seem like a huge decrease in revenue, but to Savits, whose entire practice is built on Medicaid-dependent clients, "it's the difference between paying rent and not paying rent."

In practical terms the new law is forcing Savits to choose between going without copayments entirely (an amount averaging between $200 to $300 a week in revenue), billing her clients for the copayments, or dropping some Medicaid-dependent clients in favor of clients with cash or better insurance. To her it's a no-win situation. She says she can't afford to lose the revenue the copayments bring in, but she's not about to start forcing clients like McClain to start coughing up money they don't have. ("The man can't afford a burger at Burger King," she says.)

After four years operating as the only private psychotherapist in the county -- some say in the state -- to devote her entire practice to counseling poor and severely disabled clients, Savits closed her doors two weeks ago. She hopes her absence will be only temporary, while she searches for a location with cheaper rent. But even if she manages to find such a place, she may still be forced to give up some Medicaid clients to make room for others with better insurance or with private means.

Tucked away in the mazelike corridors of a Coral Springs office building on University Drive, the Wellness Counseling Center is for the most part indistinguishable from the dozens of other medical and psychological practices that rent space in the building. The outer office contains a chair and a small love seat and a spray of Newsweeks across a coffee table. The therapy room features a wicker couch, a teddy bear, and several flowery vases.

Appearances are where the resemblance ends. Unlike most other psychotherapists, Savits has never had much use for "the walking worried" -- yuppies with low self-esteem, midlevel managers with midlife crises, addictive personalities with AOL afflictions. She sees herself as performing emotional triage in a war zone, and she treats the worst-hurt first.

National studies have consistently shown that people with severe disabilities are three to four times more likely to suffer depression and other emotional problems in their lives than those who are able-bodied. No wonder, when you consider how their lives are dominated by their physical ailments.

Most have to rely on relative strangers to help take care of physical needs that many people would not choose to share with an outsider. "Their bodies are an open book," Savits says. "Where's the privacy? Where's the respect that most of us take for granted?"

Consider 32-year-old Donna Iavarone, who lost both parents within a year of each other and is just now, three years later, going through the grieving process. While dealing with that emotional trauma, she is also struggling to establish her independence in an apartment that she shares with another disabled woman, Debbie Price. Neither Iavarone nor Price can walk because of cerebral palsy, and they have set up their apartment so that everything they need can be reached while they sit on the ground. Their only alternative is to live in an institution.

Another client is a 50-year-old woman who has been confined to a wheelchair ever since she took her father's rifle and, under the spell of a teenage broken heart, shot away the part of her brain that controls her body movements below the neck. The woman has been a quadriplegic since the age of 14, and her parents, though living, do not visit or call.

Savits is not new to dealing with the needs of the disabled. If any moment can be identified as the beginning of Ellen Savits' mission, it would be the moment more than 30 years ago when a doctor told her that her young son Craig would never live to see his tenth birthday.

Craig had been born with severe mental retardation, and the doctor's advice to Savits was to have the boy institutionalized. Instead, she read everything she could find about mental retardation and then decided to embark on a controversial and incredibly rigorous program known as "patterning."

For the next five years, she put herself and Craig through a diligent daily schedule of mental and physical stimulation. The goal was to stimulate thought and activity and, by having the child mimic the body movements of an infant, return his brain to infancy so that he would have a chance to "relearn" different patterns of development. She doesn't know whether the program did any good, but the child who doctors predicted wouldn't live past the age of ten now lives in his own apartment and holds down a job in a fast-food restaurant.

Savits' husband, Mike, now says he doubts whether the patterning had anything to do with Craig's success. "I think the process itself has no validity, but that kind of attention given to anyone at that stage of life is bound to be productive."

Savits credits her work with her son with setting her on the path that led to her current occupation. At the time she didn't really know what she wanted to study. After her son was born, she changed her major to psychology. After graduating with a master's degree in social work from Dowling College in New York, she and her husband moved to Philadelphia, where she found work in a community hospital. Eventually, she rose to become director of the hospital's mental retardation center before moving to Florida in 1991.

Despite her background serving people with disabilities, she had no intention of creating a practice that concentrated solely on disabled clients when she opened the Wellness Counseling Center in 1994. However, she quickly began getting referrals from friends in the world of disability services, and soon there was no room for any clients except those with disabilities.

In retrospect this may not have been the wisest or safest way to structure her practice. "I think she dug her own grave, to an extent," says Joan Glickman, an aide to state Sen. Howard Forman (who voted for the legislation). Although Glickman says she sympathizes with Savits' plight, "when none of your clients has any money and all your income is based on government programs, you make yourself vulnerable."

That, in fact, is the reason "there's no one in the state like Ellen Savits," in Glickman's words. According to Barbara Cox, a graduate student in psychology at California State University who is studying the links between depression and disability (and who has cerebral palsy herself), there are few psychotherapists like Savits in the entire country.

The largest reason is also the simplest; disabled clients don't pay well. "Look, when you're talking about the disabled, you're talking about the poor," says Savits' husband, Mike, who heads the music department at Florida Atlantic University. "The two words are practically interchangeable."

That's why Cox, who says she'd like to devote her career to treating the disabled poor, probably won't. She could never afford to. "As a rule of thumb, a third of a practicing psychologist's income goes to overhead. If you're only bringing in what Medicare pays, something like $30 an hour, it's really like you're losing money."

Treatment of someone with a severe physical disability is time-consuming and arduous. "In order to get anything done, you're going to have to commit two hours for every hour you charge," Savits says.

Few of Savits' clients can speak clearly enough to be understood without frequent repetition and a lot of patience on the part of the listener. Many drool and twitch uncontrollably. Few can hold a pencil well enough to write.

Consider McClain. Indeed, he is one of Savits' more verbally adept patients. It took her only a week or so to become accustomed to his speech patterns so that she could readily understand him. With other clients she still has to keep a communication board handy during therapy. This is a device that looks a lot like a Ouija board, with letters and numbers painted on top so that a person who cannot speak can physically spell out what he or she is trying to say by pointing to the letters.

Then there's the appearance problem. "These folks are in wheelchairs and will never get out of them," says Savits. "They can barely talk, they're spastic, they can't control their body movements. Face it, these are not pretty people that many psychologists would want hanging around in their waiting rooms."

Agrees Cox: "A lot of people are put off or scared by someone with a severe speech impediment. They're not really prepared to handle a client who needs communication boards or who has to raise their eyebrows to say yes. I've even had problems finding research assistants." The result: "There's not really a network of providers" of therapy for the severely disabled, says Cox.

Meanwhile, the preferred treatment for the emotional problems of the severely disabled is medication. "I'd say 90 percent of our clients are on psychotropic medication," says Merle Bloomberg, executive director of Advocates For Opportunity, a nonprofit service group for the disabled. "Normally there would be some therapeutic element to this form of treatment, but with these people, the feeling is, give them a pill and they'll be OK."

In the '70s, Cox says, some psychologists argued that a severe physical disability by its very nature caused such damage to the ego over the course of growing up that the resulting emotional problems were as incurable as the physical problems.

That view has since diminished. But it has been replaced by a debate over the connection between severe physical disability such as cerebral palsy and mental retardation.

Most of the clients Savits sees have cerebral palsy, a little-understood disease that has no cure and can spring from many causes. There are three types of cerebral palsy: spastic, athetoid, and ataxic. By far the most common of these is spastic, in which body movement is stiff and difficult. This is the type of cerebral palsy afflicting David McClain. Athetoid cerebral palsy is characterized by uncontrollable movement and twitching, ataxic cerebral palsy by impaired balance and depth perception.

Some of Savits' clients have been diagnosed as being mildly mentally retarded, a label they universally reject. Paul McCarthy, for instance, refuses to go to workshops at one particular group home because, he says, "they want to put me down as an MR (a person with a diagnosis of mental retardation) on their paperwork." In McCarthy's case it's not difficult to see where the assumption would come from. His is an especially spastic case of cerebral palsy that causes him to twitch and writhe so rapidly and violently that he must be strapped into his chair or he'll jerk himself onto the floor. And most diagnostic tests for mental retardation require physical dexterity.

Given that so few psychotherapists devote their full practice to serving the poor, the impact of the law's provision was bound to be slight from a wide-angle view.

But here in David McClain's last counseling session, the law's impact is somewhat more weighty. "As you know, I'm going to have to give up this office space next week, so this will be our last session for a while, David. But you have my beeper number, and I want you to feel free to call me anytime you want to talk."

McClain knew this was coming, but he's still forlorn at the prospect of having to give up his weekly counseling sessions. He'll manage without them, he says. He has no choice. And anyway, "I'm used to losing people."

The law's impact is also being strongly felt at the United Cerebral Palsy Group Home Number Four in west Davie. For nine months Savits has been visiting this home every Friday afternoon for a joint counseling session with a group of residents who are too badly disabled to visit her office.

Here one finds none of McClain's stoicism. Indeed, when they first learned of Savits' predicament, they hit their computers and started churning out letters.

"Dear Rep. Eggelton," wrote 34-year-old Yung Beckwith, in a typical letter. "I hear that Medicaid will be cut again. This time they are cutting our psychotherapy. Imagine what it would be like when you don't have a professional to talk to, especially when psychotropic meds are prescribed without therapy. I can't do it alone. I feel like somebody cut my leg in half. I don't want to go back to a psychiatric hospital, which might happen if money for therapy is cut. I hope you understand what I say."

The lack of understanding is the big problem for people with cerebral palsy, for many of whom the ability to communicate is so limited that they end up not communicating at all.

"The inability to express feelings is one of the biggest problems I see on a regular basis," says Savits. Often this is manifested in the form of unexpressed grief. "When you've been raised by overprotective parents, as many of the parents of my clients understandably were, the loss of mom and dad becomes the loss of self, the end of the belief in self, the loss of coping skills.

"One of the big things that must be expressed in these situations is anger -- anger toward parents for not preparing their children for the parents' own deaths. Just look at David (McClain). His parents died and left him with just the clothes on his back. This leads to a tremendous polarization -- on the one hand, there's love and grief, on the other hand there's anger. Remember when David said he feels kind of stuck? This is what he means. He's got all these different feelings, and they haven't come out. He's disassociated from them, and he needs to work them out and come to terms with them. Technically, it's called a dissociative disorder."

The loneliness is exacerbated by the fear of being alone. McClain, for example, is trying to succeed outside of a group home for the first time in his life. So is Donna Iavarone, who had never lived away from her parents before their deaths three years ago. "Donna never shed a tear after her parents died. She was afraid she'd break. It took a couple months, but the dam finally broke. Now we're in the process of planning a memorial service for her parents."

Another common set of symptoms she sees is related to the stress of losing friends and relatives -- symptoms that can hide unseen for years before erupting. People who live in group homes tend to make friends with the people who work in their institutions. But workers don't stay in these low-paying jobs for long. One friend after another comes into the resident's life and then abruptly leaves. When you combine this process with the inevitable deaths of close relatives, "life becomes just one loss after another," Savits says. "How many losses can a person take in life without breaking down?"

By far, though, Savits sees helping clients understand, accept, and deal with their sexuality as her biggest challenge. "By and large most of my clients were raised as asexual beings by overprotective parents. So now they're adults, and they have sexual feelings, and they don't know what to do with them. That's typically one of the first subjects they want to talk about."

Robert Salcedo knows how difficult such acceptance can be for someone whose life is marked by repeated sexual and romantic frustration. During Salcedo's most recent counseling session, the theme of sex and frustration dominated the hour.

"When I was growing up, nobody ever said the word 'penis' to me," says the 58-year-old South Florida native. He raises his finger to his lips. "SHHHH! Don't talk like that! But it needs to be brought out of the gutter. I don't think it's healthy to experiment in a dark room. Part of me is an adult, but part of me is underdeveloped. I don't mean the biological part. I mean my feelings."

Except for an occasional question, Savits says little as Salcedo talks about his sexuality. The point isn't so much to provide answers, but to act as a sounding board and to help him understand the context of his feelings. "These are questions that don't really have solid answers," she tells him at one point.

How does Savits help clients deal with such problems? "There's no secret. There's no special method or anything." She emphasizes role-play, the reliving of important experiences, and the expression of emotions. In addition she prefers a humanistic approach "that looks at the whole person: their past, their present, their future, their role in the community -- everything."

She also tries to be flexible in her approach, and one technique she has found effective at times is the "prescription of the symptom." For example, one client had a tendency to get spastic and very loud whenever a question made him anxious. "So I told him, 'Today during our session, I want you to shout and move around.' Like that, he quieted right down."

Overall, Savits' goal is to help her clients come to acceptance by facing their losses and expressing their feelings. At times the process can be harsh, because her clients are people at whose cores lies a solitude so intense and enduring it's beyond the capacity of most folks to imagine. It's a solitude born of the awareness that no matter what they might feel or know or think, they will always look and speak and act differently than others.

And sometimes success is measured in tears shed.
Delores Inez Garcia, an elderly woman who lives in the Davie group home, knows the truth of this. In 63 years of living with cerebral palsy (when she was born, the disease had not even been identified), Garcia has survived the deaths of almost everyone who has ever been close to her. Over the past few years, her health and level of functioning have been failing, and she has increasingly tended to retreat into herself, shutting down all emotions behind a locked door in her mind.

Then last fall saw a sudden breakthrough. "It was Yom Kippur," Savits says, "which is the major Jewish holiday for praying for the dead, and Delores was being very close-mouthed about it. She'd just shut herself down. So I started to talk about loss, and I was trying to get her to talk about how she felt about the deaths of her parents, and I just casually commented that for me, Yom Kippur is the most difficult holiday of all, because thinking about the ones I've lost makes me cry.

"Then I asked her, 'Who do you cry for, Delores?' and there she was with a tear in her eye. So we talked about her parents and her love and grief for them. Finally I looked at her, and I said, 'You know, Delores, there's one loss we haven't talked about yet -- the loss of Delores. How do you feel about losing her?' Well, she broke down again, crying and sort of giving me dirty looks through the tears.

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