ALS sufferer, caregiver lose Medicaid money after marrying each other


By CLARE HOWARD
GATEHOUSE NEWS SERVICE
Published Wednesday, November 28, 2007


KNOXVILLE — Last week, Stefanie Emstrom was being paid $1,800 per month in Medicaid money funneled through the state to provide care for Bryan Eklund, who has amyotrophic lateral sclerosis (known as ALS or Lou Gehrig’s disease).

This week, as Mrs. Bryan Eklund, she’s still his 24-7 caregiver but is paid nothing.
After being married Sunday, the couple who live just east of Galesburg is forgoing a honeymoon to fight what they contend is an unjust law.

If she lived in Oregon or a handful of other states, Stefanie’s income would remain intact despite her marital status. In Illinois, the state will pay parents, friends or strangers as caregivers but not spouses.

“If this really is a country of the people, by the people and for the people, we’ve got to change this. There are too many people out there who are hurt by this,” said Stefanie, 50.

“I’m doing this because it’s the right thing to do, but I’m scared to death.”

Without the income from Medicaid, the couple’s budget is reduced to Bryan Eklund’s $750-per-month disability payment.

Stefanie Eklund is a nurse, but if she returns to work, her husband will need a paid caregiver. So she plans to start cleaning houses — houses that are handicapped accessible because she will take her husband in his electric wheelchair with her.

“Wherever I go, he goes,” she said.

Bryan was diagnosed at the Mayo Clinic in Rochester, Minn., when he was 28. He was told he had three to five years to live. At that time, he was farming in the Galesburg area. Now, 19 years later, Bryan, 47, is confined to a wheelchair and speaks with great difficulty.

With his wife interpreting for him, he said, “I’m ready to go to Springfield and speak before the legislature.”

Also willing to appear before state lawmakers are Kathi and Dennis Kupferschmid of East Peoria. Dennis was diagnosed with ALS nine years ago and has been paralyzed and on a ventilator at home for the past four years. He requires around-the-clock care.

Sen. David Koehler, D-Peoria, has met with the Kupferschmids, who are married and have never received spousal caregiver payments. Koehler is researching programs in other states that provide payment for spousal caregivers. He plans to introduce legislation in Illinois to allow payment to spouses.

“In the end, as a state, do we discriminate against people because they are married? This is really an issue of fairness,” he said.

At one time, Bryan and Stefanie Eklund believed the battle to change the law in Illinois was not one they could afford to wage. The two felt they could afford a legal wedding only when Bryan Eklund was days from death.

Although he is progressively weaker and now almost unable to stand, they decided not to wait.

Their children from their previous marriages were present at Sunday’s ceremony.

“This could be good for our children and our grandchildren. They will see we are taking a stand,” Stefanie said. “We are tackling an unjust law, and we are calling on our state legislators to make some changes.”

Kathi Kupferschmid said payment to spousal caregivers does not cost more money in the long run because patients who must be institutionalized could receive that care at home.

“I’d like to get up there before the legislature and say if other states have made it work, we can, too,” she said. “I have not had a paycheck in five years. We live on Dennis’ disability and help from family. Material things mean absolutely nothing to me. I will live like this because it is my responsibility to care for my husband.”

Rep. Donald Moffitt, R-Galesburg, said payment for spousal caregivers is not an additional expense and is not another costly government program.

“This raises interesting and practical questions. If a person needs care and is entitled to care, then it seems like the state shouldn’t specify which qualified person provides that care,” he said. “It is not costing the taxpayer any more because care is provided by a spouse.”

Moffitt said he intends to speak with Koehler about working on legislation covering this issue

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