December 17, 2001
and his wife, Tama, sit with their son, Michael, 7, in
their Hermosa home on Tuesday. To qualify for financial
assistance for their son, who has cerebral palsy, the
Jacobs must not exceed|
By Jennifer Reeder
Special to the
A familyís struggle to raise a son with a
disability has attracted the attention Ė and research power Ė
of local college students.
Last Monday, students from an education class
at Pueblo Community College presented research they conducted
to Tama and Bil Jacobs, parents of 7-year-old Michael, a
first-grader at Needham Elementary School who has cerebral
palsy and uses a wheelchair.
The information pertains to the familyís main
dilemma: how to work without exceeding earning limits set by
two government programs. Through Medicaid and Supplemental
Security Income, the government provides health care and
financial assistance to families like the Jacobs to help with
medical expenses associated with their sonís disability Ė from
wheelchairs to physical therapy and medication. The programs
do not cover expenses for adaptations to their home, like
lower sinks, enlarged doorways and wheelchair ramps.
Cerebral palsy is paralysis that often occurs
in infancy because of brain injury. In Michael Jacobsí case,
it may have been caused by a mild stroke he suffered, though
doctors arenít sure when it may have occurred. The first sign
that led to his diagnosis was a seizure he had when he was 3
days old. But that didnít deter his family.
"When something like that happens, you just
go with it," Mrs. Jacobs said.
The Jacobs moved to Durango from Phoenix five
years ago for the quality of life the community had to offer,
Mr. Jacobs said.
But Colorado Medicaid laws place income
limits on the amount of earnings and assets a family can have
in order to qualify for benefits from the federal
"Iím 50, and Iíve worked all my life, fought
in the war, had the American dream," he said. "Now all of a
sudden, I canít work because if I do, we lose Medicaid."
Mr. Jacobs was a computer designer at Blue
Line Special in Durango Ė refusing raises and working at
reduced wages to stay eligible for benefits.
He took medical leave in June for bypass
surgery, and his wife had to go to work for a home health
agency to support the family. Now if he goes back to work,
their income will exceed the three-person household limit of
$2,400 a month and the $5,000 asset limit.
"We need the Medicaid but itís hard to live
on the income we need to be eligible for (Supplemental
Security Income)," Mrs. Jacobs said.
The waiting list for a state Medicaid waiver
to lift limits on earnings is about three years, and the
family would not be able to collect Supplemental Security
Income or Medicaid during the wait period. Because Michael
Jacobs is scheduled to have surgery in February, and his
wheelchair needs repairs, the family cannot risk living
without the programs, Mr. Jacobs said.
"I donít want to get in a situation where we
have to file for bankruptcy," he said.
Mrs. Jacobs stressed that she doesnít harbor
negative feelings for legislators, and that Rep. Mark Larson,
R-Cortez, has been particularly helpful.
"Iím being as vocal as I can at the state
level," Larson said. "We should allow families like the Jacobs
to go ahead and work and be able to support their son Ė itís
not like theyíre going to go out and become millionaires
overnight and bilk the system."
Lynda Morris, an adjunct professor at Pueblo
Community College, met Mrs. Jacobs at church and asked her to
speak to her students about the challenges facing families of
children with disabilities. Her class, First Start: Including
Children With Disabilities, is a requirement for students in
the early childhood education program.
"Itís important for students to put a face to
a disability," Morris said.
The students were so impressed by Mrs.
Jacobsí presentation that when asked to create a "meaningful
project that would live beyond the class," they decided to
research information and resources to help the Jacobs, Morris
The students presented their findings to the
family last week, right before their final exam.
Student Meredith Cox said the class broke
into teams to research legislator contacts, benefit-program
rules and how to write petitions.
"It gave us a lot of new information about
how to better introduce and include children with
disabilities," Cox said. "You need to study up on each and
Mrs. Jacobs said the information will be
helpful as she continues to advocate for an end to what she
sees as a Catch-22, and the right to earn a more livable
income and still qualify for government aid. She would like to
see the income caps raised, decent insurance for "uninsurable"
children and waivers for all who qualify.
"Tama is the biggest advocate for her son
because she believes in him being as independent as possible,"
said Jackie Morlan, director of family and children supports
at Community Connections, a nonprofit organization that
provides services to families and children with disabilities.
"She doesnít have pity for him, and it shows."
Mrs. Jacobs said that the asset limit of
$5,000 is too low and means the family canít save money for
her sonís college education. Michael Jacobs has aspirations of
one day becoming a movie director, she said.
"Weíre doing this for Michael," she said. "We donít want
him to have to be on the system when heís older Ė he has a