The problems began when Joel Spencer Reese was five years old.
The boy from rural Bismarck, Mo., was displaying emotional difficulties, and after evaluation at a counseling center, was diagnosed with depression.
Since then, for the past 3-1/2 years, Spencer has been in and out of psychiatric hospitals, and the list of diagnoses has grown, including psychosis and post-traumatic stress disorder. But according to the government, Spencer's disability is not severe enough to merit payment of federal benefits known as Supplemental Security Income, or SSI.
"I know the decision is wrong," says his mother, Lu Ann Reese. "I know that if Spencer doesn't qualify, we have problems in this system."
Thus begins the saga of one child in the new world of welfare, where the standards for inclusion have gotten stricter and tens of thousands of families have been told their children's benefits are ending - or not starting in the first place, as with Spencer Reese.
Last week, the Social Security Administration acknowledged some problems in the implementation of the new standards, enacted as part of the 1996 welfare reform. It said it will review some of the rejected cases (though the Reese case doesn't qualify for this review).
At root, the changes in the children's SSI program - and the controversy the new standards have stirred up - demonstrate the difficulty of translating policy into practice. While guidelines from Washington may appear to present a bright line for those who implement them, the reality of people's lives can be more complicated.
"In some ways, it's harder to evaluate disabilities in children," says Linda Landry, a staff attorney at the Disability Law Center in Boston. "In adults, you evaluate whether an individual has the functional capacity to work. But children don't work. So where do you draw that line?"
In the case of Spencer Reese, his mother believes the judge saw only her son's diagnosis of attention-deficit hyperactivity disorder, or ADHD, and turned him down on that basis. Many of the children being removed from SSI have this diagnosis, as did many who joined the rolls in the early 1990s, when the program swelled.
Administrative Law Judge Robert Ritter, contacted in his office in St. Louis, declined to comment on his ruling in the Reese case, citing confidentiality rules. But he did explain why it took almost 18 months from the date of the hearing, April 30, 1996, to issue his decision: "We were told to put a hold on all SSI cases, because of the change in the regulations."
MRS. Reese has one more appeal in her son's case. If that doesn't work, she says she'll take it to federal court. The Reeses also can file a new SSI application - one that takes into account Spencer's worsening situation since last year's hearing. But Mrs. Reese is worried that Spencer would lose his right to back pay if she applies again.
In the meantime, the family is getting a little more behind each month with its finances. Joel Reese, Spencer's father, is himself disabled, and the family receives a total of $1,382 in disability payments. Mrs. Reese had to quit social-work school a couple of years ago to deal with her family's problems. She is currently not working.