What Deb Notstad told U.S. House Speaker Paul Ryan amounts to this: The U.S. health care debate is more than a fight between Republicans and Democrats, a choice between this bill or that, or a question of who wins or loses.

“This,” Notstad said, “is about survival.”

Her son Adam Notstad, 26, is physically and developmentally disabled and suffers frequent seizures. The Stoughton family depends on Medicaid for many services for Adam, who needs constant help with daily living.

Despite his limitations, Adam runs his own can-recycling business, thanks in part to Medicaid-funded workers who help him do it.

The Republican health care bill that passed the U.S. House last month drastically reshapes Medicaid. It would cut the program’s funding by more than $880 billion in the next decade, letting states decide the impact on the 73 million poor, elderly or disabled people enrolled in Medicaid, including 1.2 million in Wisconsin.

The debate now is in the U.S. Senate, where a Republican health care bill was unveiled Thursday that has much in common with the House bill.

Much of the loudest opposition has come from Democrats, who have long fought Republican efforts to dismantle the Affordable Care Act, also known as Obamacare.

Others, like Notstad, haven’t been politically active until now. Their advocacy consists in sharing their stories with lawmakers that frame the debate over the government’s role in health coverage in terms that are deeply personal and often heart-wrenching.

Notstad had a face-to-face encounter with Ryan at Fox Prairie Elementary School in Stoughton earlier this month after getting a tip that Ryan would be there to watch his son play lacrosse. She waited until the game was over, then approached Ryan to introduce herself.

“I told him Adam receives services through Medicaid, and I would hate to see things change, and our lifestyle change, because of (the bill),” Notstad said. “I didn’t talk to him about politics.

“What I did talk to him about was family. He was there supporting his family, and I’m just trying to do the same.”

In response to a Wisconsin State Journal inquiry about the exchange, a Ryan spokesman said, “Paul knows how personal health care is and that’s why he’s pursuing reform that gives more control to patients and families.”

Advocate: Biggest change to disability supports

The Arc Wisconsin, a group that advocates for people with disabilities, is urging its supporters — which include the Notstads — to contact lawmakers to share their stories.

The magnitude of the Medicaid changes being proposed has spurred many to get off the sidelines, the group’s director, Lisa Pugh, said.

“This is the biggest funding change to supports for people with disabilities that probably ever has been proposed,” Pugh said.

Lawmakers report being deluged by constituent contacts on health care. U.S. Rep. Mark Pocan has said it dwarfed all other issues in the volume and intensity of constituent feedback to him and his office this year.

U.S. Sen. Tammy Baldwin’s office said it got nearly 25,000 emails, letters or calls from constituents so far this year who oppose repealing Obama’s law, compared to about 750 in favor of repeal.

Pocan, D-Black Earth, and Baldwin, D-Madison, strongly oppose repeal.

U.S. Sen. Ron Johnson, an Oshkosh Republican, supports rolling back Obamacare generally but has said he’s not yet on board with the Senate bill unveiled Thursday.

“I’ve told (Majority Leader Mitch McConnell) unless I have the input from my constituents and unless I have the information I need to justify a yes vote, I won’t be voting yes,” Johnson said in a statement Friday.

State Rep. Jimmy Anderson, D-Fitchburg, has been one of the leading voices in the state Legislature against the Republican health care bills. Partially paralyzed from a 2010 car wreck caused by a drunken driver, Anderson frequently touts his support for the Affordable Care Act, especially its prohibition against insurers setting lifetime limits on health coverage.

Anderson said he nearly hit his insurer’s lifetime limit for the care he needed after his car wreck, but the Obamacare protection took effect just in time.

Register for more free articles
Stay logged in to skip the surveys

The lifetime limit protection is among the features that could be weakened or scrapped by the bills under debate and is one of the biggest proposed changes that could affect Americans with health coverage through their employer.

Anderson said a recent town hall meeting he held with state Sen. Mark Miller, D-Monona, was dominated by constituents demanding to talk health care.

“We all know somebody who’s been sick or injured, so it’s not surprising that people are able to connect with this issue in a very visceral way,” Anderson said.

Pre-existing condition protections at issue

Sweeping health care changes also would await the more than 10 million Americans, including more than 217,000 Wisconsinites, covered through Obamacare’s individual coverage marketplaces.

The House and Senate bills remove the Obamacare mandate that everyone purchase health coverage. They also roll back the law’s taxes on the wealthy and the health care industry that helped finance expanded coverage for millions of Americans.

The House bill would change federal tax credits that help people buy insurance, basing credit amounts primarily on age. Current law accounts for income, providing larger subsidies to those who earn less. The Senate bill also takes income into account.

The House and Senate bills would permit states to opt out of current requirements that insurers cover a set of basic benefits, such as hospitalization or mental health care. Under the House bill, states could allow insurers to charge more to cover people with pre-existing health conditions if that person had a break in coverage. The Senate bill would not permit insurers to increase premiums for people with pre-existing conditions, but states could allow insurers to not cover costs associated with some conditions, according to a Washington Post report.

Gov. Scott Walker said in May he would consider seeking a waiver to let insurers raise premiums for people with pre-existing conditions if federal law were changed to allow it. He later told the Milwaukee Journal Sentinel “we’re not looking to change pre-existing conditions.”

The issue caught Chelsey Schaumberg’s attention and prompted her to contact Baldwin’s office. Schaumberg’s 4-year-old daughter, Zoe, was born with a congenital heart defect that required her to have open-heart surgery at five days old.

Zoe now is growing and thriving. But her condition requires ongoing monitoring and care, and she’ll carry the “pre-existing condition” label all her life, Schaumberg said.

Zoe was born shortly after Obama’s law was passed. For that reason, Schaumberg, of Seymour, said she thought Zoe would be protected from skyrocketing health insurance costs or limits on her career options based on her health coverage needs.

The proposed changes have Schaumberg wondering about something the family once took for granted.

“To me, it’s like they’re taking the American Dream from her,” Schaumberg said.

‘It’s been so daunting’

Another family motivated to speak out is Jim and Jean Mosenfelder of Appleton. Their daughter, Joy Mosenfelder, 35, of Boston, has multiple sclerosis.

Joy suffered serious flare-ups of the disease that caused pain, muscle spasms and loss of feeling in much of her body. Then she found an intravenous drug treatment that quelled the flare-ups. But at more than $5,000 a month, it costs more than her monthly salary. For now her insurer pays for the treatment, which enables Joy to work full-time and support herself.

Under the proposed changes, her parents worry what would happen if an insurer limits her coverage — or if she would lose coverage due to a job change and struggle to regain it due to her pre-existing condition. They’ve written all of their federal lawmakers to share their concerns.

“It’s tough enough to see one’s child suffer,” Jim Mosenfelder said. “It’s an additional burden not to know that child is going to receive the medical care that they need.”

For the Notstads, the ups and downs of the health care debate have created more daily living hurdles for a family that already has its share of those.

“It’s been so daunting that it makes me upset; I get really sad. There are days when I can’t even look at social media or the news,” Notstad said.

“I would like to urge them to think about their own families,” Notstad said of lawmakers. “Think about them, and have a heart.”

Capital W: Plug in to Wisconsin politics

Subscribe to our Politics email!

* I understand and agree that registration on or use of this site constitutes agreement to its user agreement and privacy policy.