Florida has yet to see many of the benefits of President Barack Obama's healthcare reforms – and that is the way Governor Rick Scott wants to keep it. Scott, who is leading the supreme court challenge to the Affordable Care Act on the grounds of unconstitutionality, has done his best to shrink Medicaid, the safety net for the poorest, and block federal funding intended to enable states to enrol more children in healthcare insurance.

Scott was elected on a ticket to increase jobs in the state at a time when Florida was hard-hit by recession. Unemployment in the year before his election and the two years since has fallen, but Scott's popularity ratings are low, hitting a high of 41% in one poll in May – the first time he has been out of the 30s since gaining office.

His die-hard opposition to healthcare reform frustrates advocacy groups. "We still have 19 million people and four million uninsured in Florida. Half a million of them are kids," says Laura Goodhue, who runs Florida CHAIN in West Palm Beach. There are specialised children's hospitals that will help them if something terrible happens, but they don't get preventative care and the ordinary disasters of childhood can bring big problems, said Goodhue.

"Even things like broken bones – if a three-year-old breaks his leg and his parents have no insurance, they will go to the emergency room and his parent will be billed. They can go into bankruptcy to pay it off."

It happened to taxi driver Ron Pierce, who works in Jacksonville but at the time was living in Orlando. "I had to file bankruptcy last year because of emergency room bills," he said. "My three-year-old got sick two or three times and I had some surgery done. They treat you and do everything like a regular physician but when you leave they try to get money from you." It costs $500 just to walk through the door of the emergency room of the hospital they used in Orlando.

They were not eligible for Medicaid. "My wife was working, though she is not any longer. We are just very average middle-class folks." When she first got pregnant, they did have health insurance. "We would not have conceived unless we had insurance. You have to think about these things," he said. But his deductible – the amount he had to pay before the insurers would contribute – was $1200. "Who carries $1200 around in their pocket?" he asked. "Some people don't have that in their savings account. There is a major problem in healthcare. I think they are leaving out the middle class. The people who go out to vote tend to be the wealthier folk. They are the ones who make the decisions."

Pierce says he wishes the healthcare reforms would be explained in simpler, laymen's terms. Dr Eric Sandler, a children's cancer doctor at Nemours hospital in Jacksonville and board member of the American Cancer Society says the discussion does not get much beyond the simplistic TV advertising campaigns of politicians. "Political discourse is really not part of the culture, like it is in other countries. Many people who are supporting Romney [in the presidential election], if you ask them what it is they are supporting, they are supporting not getting Obama re-elected."

'We were paying anything from $600 to $1000 for doctors' bills'

Much of Scott's support comes from Florida's large number of affluent retirees, who see no need for change. They are eligible for Medicare, which ironically is a universal healthcare benefit for older people. "Florida is always a swing state in presidential elections and we have a lot of seniors. They retire to Florida and they vote," said Goodhue. "It is very heated and very political."

Her organisation tries to show the inequities and absurdities in Florida's healthcare system. "I was pregnant and my husband was trying to get coverage on the individual market and he couldn't – because his spouse was pregnant." Even though he was not asking for coverage for her on the policy, they were turned down in case they should somehow extend the policy and have a child with a birth defect.

Dawn Josephson, who lives in Jacksonville, fell foul of another insurance trap. When her son, Wesley, woke up one morning in 2008, aged two and a half, only the white of one eye was showing and the iris of the other was hardly visible. It was sudden-onset strabismus, caused by lack of co-ordination between eye muscles and the brain. The two eyes were no longer focussing on the same point.

They were paying $800 a month for health insurance for their family of four, with a $1500 deductible and they were liable for 20% of their costs after that. Wesley had a surgical procedure which cost about $8,000 although there was no overnight stay. With lab tests, the bills probably came to $12,000.

"About two months later, we got a nice little note from our insurance company saying we are now terminating this policy and we have nothing else to offer you," she said.

"My husband and I are self-employed, so we have to get our own policy. We found another for about the same rate, but because Wesley had this pre-existing condition, anything relating to the eye was not covered. We were still going to the doctor every two months, paying anything from $600 to $1000 for doctors' bills." Nemours children's hospital had a payment scheme, so they ran up bills and paid a small monthly amount towards them.

"Around April 2010, we said we can't do this any more. There has got to be an alternative," she said. An insurance agent found them a cheaper policy, which would at least save them some money towards Wesley's bills.

When Josephson called the insurance company to check if the policy had gone through, the women on the end of the phone told her they were all covered, including Wesley. Josephson could not believe what she was hearing. "For a split second I thought they made a mistake – just shut up and take the policy," she said. "Then she said to me, 'We are no longer excluding pre-existing conditions for children.'"

On March 23, President Obama had signed the Affordable Care Act into law. Wesley Josephson had just become one of the first beneficiaries.

Until 2014, however – and unless the supreme court or Mitt Romney as president strikes it down – adults with pre-existing conditions do not have to be covered. Josephson's husband was recently diagnosed with a basal cell carcinoma – a very common condition which rarely causes much problem and involved having some skin scraped away under local anaesthetic. "He was told he is now uninsurable," said Josephson. "The current plan can't drop us but they are stuck with us and nobody else will offer him a policy."