Tragedy Fuels Mental Health Parity Bill

Senators' family tragedies seal coalition to pass mental health bill.

October 8, 2008, 1:35 PM

Oct. 9, 2008 — -- After a decades-long fight to enact legislation championing the medical rights of the mentally ill, only Sen. Pete Domenici, R-N.M., stood at the finish line to hail a bittersweet victory.

The mental health parity bill, which had lingered in Congress since 1996, was a vehicle for lawmakers to pass the financial bailout that was signed into law in record time by President Bush last week. The law requires that insurance companies treat those with, say, depression the same way as those with diabetes or AIDS.

"Senator Domenici became a hero for us," said Michael Fitzpatrick, director of the National Alliance in Mental Illness (NAMI). "His tenacity and vision over the course of many years finally brought it home."

Two powerful partners share in the legacy of the bill's passage: the late Sen. Paul Wellstone, D-Minn., and Sen. Ted Kennedy, D-Mass. Wellstone was killed in a plane crash in 2002, and Kennedy, who took up the charge after Wellstone's untimely death, is ailing with a life-threatening brain tumor.

Named for its initial co-sponsors, the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act was more than 12 years in the making. Its success hung on a coalition of lawmakers who all had been touched by mental illness.

For the political "odd couple," as Wellstone called them, it was personal: Wellstone's brother had been hospitalized as a boy, causing near financial demise for the family. Domenici's daughter Clare was diagnosed 20 years ago with atypical schizophrenia, wreaking emotional havoc on his family.

"Everyone who lives in this great, good nation of ours knew the government had forgotten this one issue," Domenici told "This has been a long time coming."

Mental health advocates say that the law will make life easier for families who faced limited doctor visits and higher deductibles and co-pays for mental health treatment. A teen in a car accident was far better off than one with psychosis, in the eyes of most insurance companies.

Domenici said he had e-mailed Kennedy, who was too sick to make it to Washington, and the Massachusetts senator confirmed happily, 'This is a big one.'"

The bill eventually garnered widespread support because of the tenacity of Domenici, a father of eight, whose own struggle struck a chord in others.

Kennedy's sister Rosemary, who died in 2005 at the age 86, spent a life disabled and institutionalized after a lobotomy for mental illness nearly 60 years ago. His first wife, Joan, still wages a public battle with alcoholism.

The senator's son, Rep. Patrick J. Kennedy, D-R.I., who sponsored the House version of the parity bill, has faced bouts of prescription drug abuse and depression.

"There isn't an individual or a family that has been spared the impact of these devastating illnesses," Rep. Kennedy said in an e-mail. "To deny coverage, when proven and available treatments can make such a positive difference in a person's life and their family's life, is beyond infuriating."

Just recently, Domenici was diagnosed with frontotemporal lobar degeneration, or Pick's disease, which progressively affects brain functions like organization, decision-making and control of mood and behavior.

The six-term senator retires in 2009, but not without leaving a historic legacy for 113 million Americans under employer-sponsored insurance plans who are expected to benefit from the legislation.

"This moves the ball tremendously," said Domenici. "I'm a pretty passionate guy, and there's a certain amount of pleasure in doing things that are hard to do."

Today, about 58 million Americans have a diagnosable mental disorder. Mental illness has also been associated with more than 30,000 suicides each year. An estimated 16 percent of all inmates suffer from mental illness.

The new law does not mandate group plans to provide mental health coverage, but requires insurance plans that offer mental health coverage to do so on a par with physical illnesses. Only companies with more than 50 employees must comply.

Before the 1980s, Domenici hadn't paid much attention to mental health care -- that is until his daughter, Clare, now 46, was diagnosed with atypical schizophrenia after her first year in college. She struggled with her focus, had bouts of anxiety and her personality began to change.

"For a long period of time, my parents were trying to determine what was the matter with her," younger sister Paula Domenici told "They were mystified."

Since then, her sister has gone on and off a cluster of medications – many with adverse side effects, such as weight gain.

"She had been a star athlete and a good student with lots of boyfriends," said Paula Domenici, 41, a psychologist who works with veterans in Bethesda, Md. "To see such a transformation was shocking. It's a slow evolution and sad for families to have to acknowledge."

"There is no simple solution," Paula said of mental illness. "It has a huge ripple effect and sadness that is tied to someone you love."

In the 1980s, when Domenici and his wife Nancy began attending a NAMI support group, they heard stories of families going broke, splitting up and mentally ill children ending up on the streets, in jail, or dead.

"I'd stop by the meetings on the way home from work and meet up with 10 or 12 parents," Domenici said. "They were so passionate and the government was not doing the right things."

After a few speeches here and there, he invited Wellstone – a Minnesota liberal – to help him push for health insurance parity.

They nurtured alliances, finding many others had their own touchstones. The niece of former Sen. Alan Simpson, R-Colo., and the father of Sen. Harry Reid, D-Nev., had committed suicide; former Vice-President Al Gore's wife Tipper had suffered from depression and Newt Gingrich, then the Republican speaker of the House, who didn't block passage of the bill, had a mother who suffered from bipolar disorder.

They passed a 1996 law that banned insurance companies from setting lifetime limits on mental health care treatment and teamed up again in 2001 on an earlier unsuccessful version of the 2008 law.

"They were good friends – my mom and Nancy [Domenici] and Pete and my dad," said Wellstone's son, David. "Even though they were politically worlds apart, they found some common ground on a personal level."

In October of 2002, Wellstone died at the age of 58, along with his wife Sheila and daughter Marcia, in a plane crash. His sons picked up their father's work with Kennedy and Sen. Mike Enzi, R-Wyo.

"It's been a roller coaster ride," Wellstone, now 43, told "I'm ecstatic."

Working to pass parity legislation was "healing" for Wellstone, who later formed the group Wellstone Action to support his father's political causes.

For the elder Wellstone, passion arose from contact with constituents who'd lost children to anorexia and suicide – and a college-age brother who had a mental breakdown when the senator was 10.

"My father visited his brother [in a mental institution] and saw the deplorable conditions and the toll it took on the family emotionally and financially," said Wellstone's son.

He saw it as a "civil rights issue," said his son of his father. "He was tireless. He was a heck of a role model. He walked the talk."

Domenici says that even with this new legislation, the health-care system is broken in many respects, but he is wary of reforms that would put government in charge of Americans' health care. Still he favors federal support of more facilities to house the growing number of mentally ill.

There's also the legions of uninsured who won't be helped by the Wellstone-Domenici bill.

"This doesn't cover everything," Domenici said, referring to the 47 million American uninsured for whom the law will not apply. "But that will come."

Overall, the parity law is expected to cost the federal government $3.4 billion over the next 10 years, because employers will have more health expenses that they can deduct from their income taxes. It will also increase the costs to private insurers and possibly lead to higher premiums, though the total bill is unclear.

Domenici will be "irreplaceable" in the Senate according to NAMI director Fitzpatrick, who hailed the law for de-stigmatizing the plight of the mentally ill.

The senator's daughter Paula admires the focus and passion that has marked her father's 20-year devotion to an issue that started at home.

"When my dad sees a true injustice and knows the facts, he's 150 to 200 percent dedicated to persevere to correct it," she said. "I don't know if it's from the tradition of his Italian family, or his Catholic faith or being a lawyer, but it makes him tenacious and persistent until he rights the wrong."

Suzanne Bernard of ABC News Research contributed to this story.

ABC News Live

ABC News Live

24/7 coverage of breaking news and live events