MILWAUKEE – It isn’t easy to be patient when you can’t work and you’re in pain, as Christine Morgan knows all too well.

Her chronic pain comes from fibromyalgia. Morgan, 60, also has spinal stenosis, a narrowing of the spaces within the spine that pinches the nerves, most often in the lower back and neck. To top it off, she is diabetic, has kidney disease, high blood pressure and depression.

Yet Morgan has been turned down for Social Security Disability Insurance – twice. “They sent me a letter that said I wasn’t disabled,” she said.

Morgan appealed her most recent denial in August 2017. Her appeal wasn’t heard until more than a year later, on Nov. 7, and she still hasn’t received a ruling. She is among more than 800,000 Americans waiting for their appeals to be decided. Each year thousands die waiting for an answer.

In fiscal year 2016, 8,699 Americans died on the disability insurance waiting list. That number rose to 10,002 in 2017.

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About 8.8 million Americans depend on Social Security Disability Insurance, a safety net that helps families who have worked a certain amount and paid Social Security taxes.

“It is totally unacceptable for 10,000 people to lose their lives waiting for insurance they paid into,” said U.S. Rep. John Larson, D-Conn.

“If that rate continues, it could be close to 11,000 people this year. It is an unending nightmare is what it comes down to,” said Mary Dale Walters, senior vice president of Allsup, a Belleville, Illinois-based company that helps applicants apply for Social Security Disability Insurance and return to work if they are medically able.

“If I knew my life was ebbing away, the absolute last place I’d want to spend it is on the Social Security disability waiting list,” she said.

According to the Social Security Administration, the average wait for an appeal to be heard and decided is 540 days across the country.

“Reducing the wait times for a hearing is of the utmost importance to the Social Security Administration,” said Doug Nguyen, a regional spokesman for the administration, which runs Social Security Disability Insurance as well as the Supplemental Security Income and Old-Age and Survivors Insurance programs.

“For several years in a row, the agency received a record number of hearing requests, due primarily to the aging of the baby boomers as they entered their disability-prone years. We also received an increase in applications during the economic recession and its aftermath.”

At the same time these factors were creating more demand, Nguyen added, “Our resources to address disability claims did not keep pace with the increase in applications, and backlogs grew.”

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Nguyen stressed that the Social Security Administration has reduced the waiting list for hearings for 22 months in a row, from January 2017 to October 2018, thanks to a new plan to address the issue and $190 million from Congress over the last couple of years.

Larson said that it’s not hard to see why the backlog developed. Each day about 10,000 baby boomers become eligible for Social Security. As a result, the need for Social Security has been rising. It has risen about 16 percent over the last decade. Over the same period, the Social Security Administration budget has fallen by about 11 percent when adjusted for inflation, Larson said.

Although legislation to address the backlog was introduced in the House of Representatives, the congressman said the bill has been stalled for four years awaiting a subcommittee hearing.

“We hear from people who write in and say they’ve been on the waiting list for 18 months and are about to lose their house,” said Beth Laurence, a senior legal editor for Nolo, a publisher of legal guides for consumers.

A stringent definition of disability

Just applying for Social Security Disability Insurance can be difficult. Take the work requirement.

The government does not measure work in years but in what it calls “work credits.” Work credits factor in both employment activity and total earnings (a person can receive up to four work credits for a single year; in general, a lifetime total of 20 is required to qualify for the disability insurance.).

Just determining whether the government covers a particular disease or disability is a daunting challenge. The “Listing of Impairments” is divided into Part A criteria for adults 18 and over and Part B for children under 18. Part A divides the impairments into 14 different groups from those involving the musculoskeletal system to congenital disorders that affect multiple body systems to mental disorders; each group is then divided into subgroups and accompanied by detailed definitions, diagnostic requirements and mandatory documentation.

Required medical evidence includes a doctor’s visit within the last year, an opinion from your treating doctor stating that you are disabled and in some cases additional evidence from a doctor or medical reviewer and a vocational specialist.

The government applies a stringent definition of disability, Nguyen said: "The inability to engage in substantial gainful activity due to a medically determinable physical or mental impairment that has lasted or is expected to last at least one year, or to result in death."

When applicants are denied disability insurance and appeal the decision, they must schedule a hearing before an administrative law judge – judges appointed by the federal government.

'It's taking forever'

While some might imagine that approval for disability insurance puts the recipient on Easy Street, the truth is that the average benefit is a little less than $1,200 a month. The maximum allowable is $2,800. For comparison, the poverty level for a single adult is about $1,010 per month; $1,375 for a family of two; and $,2090 for a family of four.

Still, disability insurance would make a big difference, said Claudia Guillermo, a 50-year-old Markesan, Wisconsin, resident who previously worked for Del Monte Foods. Like Morgan, she has fibromyalgia, has applied for disability insurance twice and been turned down both times.

“It’s been very difficult to get benefits for fibromyalgia,” said Laurence, the lawyer with legal publisher Nolo. Many doctors, she explained, haven’t understood the condition.

Guillermo has twin 14-year-olds, Estevan and Daniella, and has been waiting for her appeal hearing since May. She receives $530 in food stamps. Her father has been paying for her children’s clothing and school supplies, and helps her pay the mortgage, electricity and water.

“It’s taking forever,” Guillermo said. “I’m in debt with my dad. I’m in debt with my credit card because I need to get money from somewhere.”

Help can’t come too soon as far as Morgan is concerned.

“It’s really depressing,” she said of the wait. “It just feels like everything is stacked against you.”

Morgan's long work history includes stints at McDonald's; five years at an assessor's office in Orange County, California; and 10 years working for the U.S. Department of Housing and Urban Development in Washington.

When she first applied for Social Security Disability Insurance in October 2016, she figured it might take a while to receive approval. She never thought she’d be denied.

Morgan said she felt nervous going into her two-hour appeal hearing in November. “I just answered the questions and hoped for the best,” she said.

She’s still hoping.

Follow Mark Johnson on Twitter: @majohnso