Falling through the cracks 

Monica Wilsons search for help winds through a perplexing maze of social services

click to enlarge Ivywild duplex where Monica Wilson was poisoned with carbon monoxide. - CREIGHTON SMITH
  • Creighton Smith
  • Ivywild duplex where Monica Wilson was poisoned with carbon monoxide.

It is Dec. 8, and Monica Wilson is trying to figure out how she will make it through the month.

Disabled by chronic depression and by neurological damage caused by carbon monoxide poisoning, Wilson receives a monthly check for $135 from Colorado's Aid to Needy Disabled (AND) program, her only income save for $130 in food stamps. This month, she has already spent $100 on a phone deposit and an overdue phone bill and to the pharmacy where she owed money on last month's prescriptions.

With $35 left, Wilson, a Springs native now living on the Western Slope in the tiny town of Nucla, will have to decide whether to purchase a three-month supply of contact lenses so that she can see, or pay a little more on the $285 damage deposit she has owed her landlord for several months. Glasses, she says, are too expensive, and even with cash assistance from the Lions Club, she would still have to pony up an impossible sum of cash to purchase a pair. As for the damage deposit, she can only hope that the real-estate company managing her government-subsidized housing won't evict her before she can pay the full amount.

The only help available

At age 52, following a productive professional life, Wilson finds herself among the state's most indigent -- people with disabilities, no income and who need medical care but are waiting to qualify for Social Security benefits before they can receive Medicaid. For Wilson and others like her, the state's Aid to Needy Disabled program is the only financial help available, and in last year's legislative session, funding for the program was cut in half.

Wilson grew up in the Springs, graduated Palmer High School and went on to earn two master's degrees -- one in biology from the University of Colorado and another in Library Sciences from Denver University. For seven years, she was an associate professor and librarian at Fort Lewis College in Durango. The pinnacle of her career came in her mid-40s when she became the acting director of the Helen Fowler Library at the Denver Botanic Gardens, her "dream job."

She dresses smartly, in clothes her former paycheck afforded her before she resigned her job, went through her savings and ended up uninsured and evicted from her home in the Ivywild neighborhood. Desperate for services, living in her car and frustrated by attempts to find help in the Springs, in the summer of 2003 Wilson headed west and ran out of gas near Telluride. She found a camping spot on Bureau of Land Management land next to the San Miguel River where she camped for three months before securing her current apartment in Nucla. Her only chance to bathe was in the icy waters of the San Miguel.

In January, Wilson will receive another check for $135. But on Jan. 8 she has to make a court appearance in Colorado Springs for outstanding tickets and for driving uninsured. The tires on her Ford Explorer are bald and the aging automobile has no heat. She figures she will owe the Department of Motor Vehicles at least $220. Her medicines will run out with no money to refill them.

"I'll return to Nucla dead broke, facing every single problem I'm facing today," she said. "Friends and acquaintances have been loaning me money for five years now. They are weary of shelling it out and I am even wearier yet of asking.

"At this point it's easier to endure with my phone cut off, no medicine, no transportation, no TV or stereo, alone with my cat in a little apartment in the most forgotten part of Colorado no one has ever remembered."

Relying on AND to survive

Wilson is one of 5,775 Coloradans who rely on AND funds to survive. For them and others in need of housing and health services, 2003 has been a tough year. In January, the Colorado legislature had to cut some $900 million from its general operating budget, and many social services programs felt the brunt of those cuts.

But Colorado was already a tough state for those in need. Noted disability rights attorney Steve Gold, based in Denver, recently reported that in a federal Housing and Urban Development ranking of states based on the percentage of housing money committed and dispersed, Colorado ranks 19th. But the state ranks 35th in terms of funds going to people that are extremely low-income.

With a rising population of people in need of Medicaid, Colorado has historically run one of the tightest programs in the country, second only to Virginia in the low percentage of citizens served. Community health programs are relatively well funded around the state and will accept benefits or payment on a sliding scale. But in order to get Medicaid benefits in Colorado to pay for clinic visits, people with disabilities have to first qualify for SSI (Supplemental Security Income) or SSDI (Social Security Disability Insurance), a process that can take as long as two years.

Any potential new benefits were quashed in the 2003 legislative session as well.

One proposed bill, which was killed in committee, would have allowed the state to apply for a Medicaid waiver for comprehensive substance abuse treatment services for specific Medicaid populations. According to the Colorado Coalition for the Homeless, Colorado is now one of two states that does not provide substance abuse treatment in our state Medicaid program.

For the past two years, massive cuts have been made in services to the uninsured with serious mental disorders.

And to add insult to injury, this year the legislature tacked on a $10 per day inpatient co-pay for Medicaid clients and began charging public assistance recipients a $1 fee per month for the use of electronic benefit cards (EBF) to help pay for their programs.

click to enlarge CCDC volunteer Steve Phare with client, Charlotte - JOHN D. RILEY
  • John D. Riley
  • CCDC volunteer Steve Phare with client, Charlotte

The Colorado Fiscal Policy Institute identifies those charged the fee as "the very poorest, who qualify for such programs as the State Old Age Pension, Aid to the Needy Disabled, Aid to the Blind, child care assistance, LEAP and Temporary Assistance to Needy Families." The revenue generated by the fee will be about $600,000.

In May, some relief was promised to the state by the federal government. Colorado was given one-time funds of $146 million to help relieve budget constraints and the stress put on the state's Medicaid program by the economic downturn. Half of that amount was paid the state in July. Initially Gov. Bill Owens said he planned to put the money in a savings account, but he has now agreed to restore funding to some cut programs, most of them aimed at children and the elderly.

AND funds for people like Wilson will not be restored to their previous level -- and could be cut altogether -- in the upcoming legislative session.

A grueling process

Julie Reiskin, executive director of Colorado Cross-Disability, a Denver advocacy group serving people with all types of disabilities, agrees that AND funds are desperately needed for individuals like Monica, waiting to qualify for SSI or SSDI. But the program, she says, "wasn't really working very well, even before these cuts."

"Most states have what's called city or general assistance -- city welfare is generally for people who can't work," she explained. "Colorado doesn't have this."

The Colorado constitution mandates an Old Age Pension fund for low-income seniors, but nothing for individuals with disabilities. At some point, says Reiskin, legislators realized the need for "something for people who were disabled, for the time between when you become disabled and the time you get Social Security benefits, a little bit of money, to be paid back once the person is on his feet.

"It was meant to be a short-term thing for someone with a temporary disability. The idea was, 'Let's keep them on their feet.'"

But AND, she says, has never been properly funded. Before the cut, clients were getting $259 a month, the highest amount the stipend ever reached after years of lobbying by advocates for people with disabilities.

Fundamentally, says Reiskin, the money became a subsistence fund rather than a temporary help for people in dire need.

"There are two groups of people on AND," she said. "Approximately 20 percent are people who have temporary disabilities, who have fallen on hard times."

One of her clients, for example, was a man with a prosthetic leg who worked construction and broke the prosthesis while on the job with no insurance or workmen's compensation. A new leg cost $20,000, says Reiskin, and the man was eventually evicted from his apartment because he couldn't pay his rent while out of work.

"A good advocate found one-time funding for him through charities, vocational-rehabilitation got involved, paid his rent and helped him get a job," she said. "He got AND so he could at least eat. Once he was on his feet, we never heard from him again."

That's the way, she said, Colorado's Aid to Needy Disabled program is supposed to work. But supplemental AND was suspended by the state last year and not restored, yielding a meager cost savings of $228,000, according to the Colorado Fiscal Policy Institute.

Unfortunately, the other 80 percent of people who rely on AND funds of $135 per month are people like Wilson with disabilities that are not so visible but are likely permanent. For those people, the battle is to qualify for Social Security benefits before they have lost hope, before they end up homeless or, in some cases, before they die.

The process is grueling, says Reiskin, and requires pinpoint accuracy in paperwork, proper medical documentation, and, for the most needy people with disabilities, an advocate to walk them through the process.

"These people have disabilities where the nature of the disability makes completing the application, meeting the requirements to get eligible, nearly impossible," she said. "Without an advocate, they linger from month to month on AND, growing poorer and worse off."

CCDC's priority is to train volunteers to help individuals walk through the Social Security application process and to do what they can to make the process move more quickly. Reiskin, a person with a disability herself who gets around in a wheelchair, says that benefit planners who work for state agencies and who receive plenty of funding to do the work, should be assisting clients like Wilson the way she and other CCDC volunteers do -- offering direct help, all the way through the court hearing, rather than just handing out information.

Wilson, who went to Community Health Center and Pikes Peak Mental Health in Colorado Springs, but was turned away from both, tried to navigate the Social Security process herself and was denied the first time around because of a technicality in the paperwork.

click to enlarge These flatlands near Naturita and Nucla are frequently occupied by squatters.
  • These flatlands near Naturita and Nucla are frequently occupied by squatters.

"Monica would have SSI now if, when she first applied, she had an advocate," said Reiskin.

The process has many built-in obstacles like, in the case of SSDI, a mandatory five-month waiting period.

"The assumption is that everyone has at least five months of savings," said Reiskin. "I don't know what planet they're living on."

And for every Monica Wilson who, if she can hang on a few more months, will finally get her day in court, there are many people with disabilities who never even make it to the application process.

"We know that for every person we reach, there are 30 that are not," said Reiskin.

Symptoms of exhaustion

In 1996, Wilson moved into the empty half of her elderly mother's duplex in south-central Colorado Springs, hoping to be able to commute to her job in Denver while keeping an eye on her mother.

Shortly after she moved into the house, she began to experience symptoms of exhaustion. She resigned her job at the Denver Botanic Gardens and began to look for work locally, thinking the commute was the cause of her problem.

But she began having vision problems. She was forgetful. She had terrible headaches. She couldn't follow through on the simplest task.

A job cleaning a Nissan dealership showroom turned into a disaster when Wilson couldn't remember what she was supposed to be doing and "mopped the floor over and over but forgot to clean the bathrooms.

"The workings of her mind were very illogical," said her former employer Nick Running in a letter attesting to her disability. Running's company, White Wing Business Grooming, lost the cleaning contract with Nissan and Wilson was let go.

Soon she couldn't work at all and became profoundly depressed, thinking that "it was all in my head."

Four years ago, on Dec. 8, 1999, the cause of her problems was discovered. A furnace check by Colorado Springs Utilities resulted in a Red Tag Shut-Off Notice when the carbon monoxide detector showed 140 parts per million of CO in the air of her side of the duplex. (The acceptable level is 25 PPM.) Wilson was told by a utility worker that she could have died in her sleep at any time. She moved out of the house until the furnace was replaced, with help from CSU in the form of low-income assistance.

By then, Wilson had gone through her savings and lost her health insurance, but she still believed she would return to work soon.

"I thought it'd get better," she said. "It took me a year to realize it was permanent."

Wilson began seeking medical help, but could only get a rudimentary diagnosis and prescriptions for an antidepressant and Cylert, a stimulant to help concentration. An exam in December 2000 showed a diagnosis of "major depression, anxiety disorder, panic attacks and chronic fatigue" and urged the need for "further medical care and tests and psychotherapy."

A second medical transcript from the same period shows a concurring diagnosis and further adds that Wilson suffered "amnestic disorder due to toxic brain injury, carbon monoxide; chemical brain injury, carbon monoxide poisoning, chronic; sleep disorder, probably due to carbon monoxide poisoning, insomnia type."

"I have seen a number of individuals who have been exposed to chronic CO poisoning," said Dr. William L. Ingram. "I think, however, that this lady has received a larger dose over a longer period of time and apparently continues to show ill effects. Of course, for a really complete work-up, we would require neuropsychological testing and possibly an MRI."

But with no insurance and no medical benefits, those tests were out of reach for Wilson. To the best of her ability, with short-term memory loss and loss of executive function, she tried to get the tests she needed to qualify for Social Security benefits.

click to enlarge 4b6c_cover-11883.gif

Her first petition for benefits was denied after a clerical mess-up in the Colorado Springs office resulted in a letter claiming she had missed a hearing. After pressing the law assistant at that office, Wilson finally was told that she was correct -- the hearing had never taken place and the judge named in the letter didn't even work there. Still, Wilson was denied SSI because of technical omissions in her application.

"The reason I applied for disability is to get medical care," she said. "Why in the world would I suddenly decide to sit in a room and stare at the walls? Look at my earnings record. I desperately wanted to work."

Hitting bottom

By summer of 2003, Wilson had hit bottom and was evicted from her home pending its immediate sale by her mother with the assistance of a former husband. That this house was to be her inheritance, according to her parents' divorce decree, filed in El Paso County Court in 1971, is another story of loss altogether. For Wilson, being thrown into the streets -- her possessions piled up in black garbage bags on the curb, then thrown into a storage warehouse -- was the final blow to her dignity and the end of any ties she may have had to her only immediate family member.

"I slept in the parking lot of the Village Inn in the back of my car," she said of her first night as a homeless person. "I was terrified. I thought I would die or be killed.

"I knew I didn't want to be homeless -- a woman alone in a big city like Colorado Springs."

Wilson had sought medical help at Community Health Center, a walk-in clinic for the indigent, where, she says, she was told there would be an "indefinite" wait for an appointment. The front desk took her telephone number, but didn't call her until her phone had been disconnected. When she tried again, she was told that the clinic didn't do neurological workups and didn't refer to specialists.

By now Wilson had managed to secure AND funding and was told by Pikes Peak Mental Health, a local clinic, that they hadn't taken anyone on AND in two years.

In Colorado Springs, she was told, there was a one-and-a-half-year wait for Section 8 housing.

Discouraged and humiliated after accepting a final loan of $200 from a friend, Wilson pulled her camping equipment out of the storage unit, got in her car and headed to the Western Slope, to a landscape she remembered fondly from many trips taken there over the years. She ran out of gas and money near Telluride, found a camping spot on BLM land, next to the San Miguel River, and stayed there for the next three months.

A visit to the mental health center in the Western Slope town of Norwood led her to Steve Phare, a volunteer advocate for CCDC who has been helping her put together her second appeal for Social Security benefits.

As of this writing, her scheduled Dec. 17 hearing has been delayed. For now, she has a roof over her head, $135 a month plus $130 in food stamps to live on, an advocate and only a slight remaining glimmer of hope.

Life on the Western Slope

When Phare retired from Pan American World Airways, he and wife Lisa moved to the Western Slope of Colorado. But the idyll became a nightmare when Lisa came down with severe fibromyalgia, a painful inflammatory disease, and chronic fatigue syndrome and couldn't get medical help.

Steve first became involved with disability advocacy while trying to get help for Lisa.

"Then I realized, seeing other people around here who were getting so messed over by the system," he said, "that I needed to do more."

A full-time volunteer for CCDC, Phare is currently helping three clients, all women, navigate the waters until they qualify for Social Security benefits.

"Over here on the Western Slope, we just have so few people who can offer help," he said. "We have no dental care at all in Montrose, Delta, Ouray, San Miguel County. Just a group called Friends of Man, that's the only thing. And if you go to them with a bad tooth, they don't do repairs; they just pull them.

"It's the same thing with eye care; you have to beg, borrow and steal from what few agencies there are."

click to enlarge b74f_cover-11883.gif

Regarding Wilson, Phare is hopeful that with proper medical documentation, including an MRI and a neuropsychological exam that a local doctor is helping her set up, she will eventually receive the benefits she needs, if she can hold on that long.

People get desperate, he says, and he's seen it all.

"I've had people who needed to get to doctor's appointments who had to sell their bodies to get a ride to a doctor's appointment," he said. "It's a fact. An absolute fact."

"One of those people"

Wilson never thought she'd be "one of those people," indigent and in need of government services. She says that until she became disabled, she was like the rest of the middle to upper middle class in America -- comfortable, trusting of the system and blind to the needs of the poor and disabled.

"The middle/upper middle class of our country have no special reason to question the system," she wrote in an e-mail. "For the most part, they have private medical and disability insurance, as well as friends and family who can come to their aid if they fall upon desperate times. ... They don't have the faintest idea of the reality which exists in this country all around them. The middle class lives in a protective bubble."

She continued: "When I was a comfortable member of the middle class, I was a liberal with a strong social conscience, but if I saw a woman in the supermarket checkout line ahead of me with stringy hair, a crying child balanced on one hip, and her food stamps clutched in her hand, I was not inspired with a strong desire to invite this woman to go have coffee with me and become my new best friend. In this, I don't think I was too different from any other member of the middle class, so I remained ignorant of what really goes on."

What she has learned, she says, is that middle-class folks think that there are plenty of government programs out there and that anyone in need has only to go down and apply for disability, then begin receiving benefits in a month or two -- enough to live on and to meet their medical needs.

Through experience, she has learned differently. But she counts herself among the lucky ones who can at least speak for themselves, who haven't become so disenfranchised that they simply disappear.

Reiskin, tirelessly advocating for people with disabilities who need benefits, says the system needs a complete overhaul where the money is directed at consumers rather than providers, and where programs, both public and nonprofit, need to be held accountable for results.

Moreover, cultural bias against people with disabilities must be overcome if they are to be treated as equal participants in the community.

Part of the bias stems from a distaste for "handouts."

"There's this whole thing -- is this person going to get off benefits and get back to work?" she said. "The answer is usually not."

But the real reason people with disabilities are invisible, she says, is fear.

"I think people basically fear disability and that fear creates almost a hatred," she said. "It's like, 'If I can make the Monicas of the world go away, then it can't happen to me.'"

Meanwhile, Wilson waits out her life in a tiny apartment in Nucla, hoping that help will come sooner rather than later.

"I don't mean to be overly dramatic," she said, "but I can't continue on without help. The past five years have left me drained in every way -- emotionally, financially, physically. I won't be here five years from now if I don't get help. It's that simple.

"The other day I ran into an acquaintance who asked me what my plans were for Christmas. I stared at that person in amazement. Christmas? If I'm lucky I'll survive it. Christmas will be nothing but another day of grim survival for me.

"Christmas? In my dreams."

Where to help and get help

Colorado Cross-Disability Coalition needs volunteers willing to be trained in helping clients with disabilities obtain benefits. They also need donations of stamps and office supplies and donations of money. To learn more or to join, visit www.ccdconline.org, call 877/256-5667 (voice) or 877/267-1621 (TTY).

Uninsured people seeking public health benefits can contact Community Health Center, 632-5700; Insurance information line: 442-2027, X2539; or El Paso County Dept. of Human Services, Medicaid Services, 444-5301 or 444-5303.

For a brochure listing dental, women's and medical clinics and emergency care options for the underinsured and uninsured, contact the Community Health Partnership at 888/359-1991 or 877/610-0201.


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