Hartford Courant: One of the most important articles I've read…

Courant.com:  As Mental Health Issues Rise, Politicians Open Up About Family Experiences

By DANIELA ALTIMARI, dnaltimari@courant.com

The Hartford Courant, 11:37 AM EDT, March 16, 2014

Speaking to a crowd of about 100 people at a West Hartford synagogue last month, Gov. Dannel P. Malloy plowed through his usual set of talking points on jobs, the economy and the state budget.

Then, near the end of a question-and-answer session, someone in the audience asked about mental health policy and Malloy's brisk, business-like public persona abruptly dissolved.

"By the way," he said, pausing for a long beat, "One of my own sons suffers from mental health challenges. ... I have some expertise in this area personally."

Malloy has never been big on Oprah-style expressions of emotion. His image is that of a data-driven pragmatist who favors numbers over the politics of personal pain. After broaching the topic of his son's struggles, he quickly retreated back to the more comfortable terrain of government policy.

Yet the Democratic governor's decision to mention, ever so fleetingly, his son's condition signifies a new level of openness on a topic that once was considered none of the public's business.

In recent months, several politicians have spoken candidly about their family's private anguish. Creigh Deeds, a state senator from Virginia who was stabbed by his mentally ill son, appeared on "60 Minutes" to press for new mental health legislation.

New York City Mayor Bill de Blasio offered a public statement of support after his daughter, Chiara de Blasio, detailed her struggles with depression and substance abuse in a highly-polished YouTube video.

And Tom Foley, one of the Republicans hoping to replace Malloy in the governor's office, often alludes to a chronic mental health condition afflicting a member of his family.

Advocates for the mentally ill say a willingness to acknowledge such deeply personal matters marks an important milestone in the long quest to eliminate the stigma associated with mental illness.

"The thing about mental illness is, it's incredibly democratic," said Kate Mattias, executive director of the Connecticut chapter of the National Alliance on Mental Illness. "And the wider the array of people who come out and say they, or someone in their family, is dealing with a mental health challenge, the more it moves the dial in normalizing it."

In 2009, when Malloy was still mayor of Stamford, his then-21-year-old son Ben was arrested in connection with an attempted robbery. At the time, Malloy and his wife, Cathy, released a statement saying their son suffered from an "emotional illness."

In an interview with the New York Times shortly after their son's arrest, the Malloys recounted their middle son's struggle with what they said was a form of depression. They noted other high-profile political families who have grappled with similar issues, including the Kennedys and the Gores.

It was Cathy Malloy who insisted on a public statement. "I think it's really important for us to say that this is what we're going through," she told the Times. "We understand that a lot of other people go through this.

Although one of Malloy's Democratic primary opponents urged him to drop out of the gubernatorial race immediately after the incident, the crisis was scarcely mentioned in the run-up to the 2010 general election.

But that was before the Newtown school shootings brought a new focus on the need to improve services for people with mental illness. In the aftermath of that tragedy, President Obama promised "a national conversation" on mental health.

Parents of children who have experienced a mental health crisis applaud Malloy for simply acknowledging his son's affliction.

"I know how hard it is and I commend him for being able to speak publicly about it," said Mary Jo Andrews of West Hartford. "In some ways, we've all bottled it up."

When Andrews' daughter, now 18, was admitted to a residential psychiatric program at age 12, Andrews and her husband initially weren't even sure they would tell their own siblings.

Andrews has since grown more comfortable talking about her daughter's condition. With her daughter's blessing, she joined a group of Connecticut mothers who appeared recently on "60 Minutes" to discuss the shortcomings of mental health care for children and young adults in the U.S. Creigh Deeds was featured on the same episode.

"It's very healthy to share these stories," Andrews said. "When our political leaders put a face on mental illness, they can be real leaders."

Personal Insight

Mental health remains a difficult topic.

Addressing a group of gun owners in January, Foley said Malloy and the legislature should have done more to help those struggling with mental illness instead of passing a host of new gun control laws.

"I know from personal experience how little support there is here and elsewhere for families with mental health challenges," Foley said at the time. "I would have focused on that."

That's as far as his public comments went. For Foley, who has packaged himself as a can-do businessman, displays of emotion have no place on the campaign trail. The issue never came up in his unsuccessful 2010 run for governor; he only mentions it now in the context of the post-Sandy Hook discussion on gun control.

"I don't really talk about it a lot," Foley said in a recent interview. "I consider it a private matter. I don't want it to become a campaign issue."

When policy issues surrounding mental health care are raised, he cites his family's experience in passing. "I'll only mention I understand because I have this personal experience," he said.

Foley's sister, three years his senior,

was diagnosed with manic depression, now known as bipolar disorder, Foley said. The family placed her in the Menninger Clinic in Topeka, Kan., one of the nation's premier in-patient psychiatric treatment centers.

Their mother died in 1976. "My father did what he could but he was in his 80s and then he was gone too," Foley said.

So primary responsibility for his sister fell to Foley. "I don't want to imply that she didn't have good days. Twenty years ago, more than half her days were good," Foley said. "She's a lovely person. She and I are very close."

Foley said he brings up his sister's experience not to "brag" about his role as her caregiver and supporter but because it has provided him with insight into the problems faced by people with mental illness and their families.

"I almost universally find people are at a loss when they need residential care for a young or middle-aged person," Foley said.

Foley said he knows that residential treatment is not the right choice for every patient and he is not advocating for a return of state-run institutions. But, he said, the complex patchwork of services that has replaced institutional care has many holes.

"A lot of the supports have gone away," Foley said. "States had institutions. Those institutions were abandoned in the 1970s for a lot of good reasons, but nothing grew up to replace them."

Foley said his family's experience points to a need for more resources and more education. "A lot of families just don't know what they're dealing with," he said. To help them, Foley proposed a public awareness campaign on the signs and symptoms of mental illness.

Malloy's 2014 legislative agenda includes funding for expanded mental health services for young adults and mandatory mental health crisis intervention training for all Connecticut police officers.

Malloy also is proposing $2.2 million in new funding for 110 supportive housing units for people with mental illness. "That is one of the biggest things that can help people with mental illness stay in the community instead of being hospitalized," said Kate Mattias of National Alliance on Mental Illness.

And the governor's budget calls for spending $250,000 on an anti-stigma campaign with billboards and public service announcements to promote an "accepting environment" that encourages people with mental illnesses not to be ashamed to seek treatment.

That's a point Malloy emphasized in his comments to the members of the synagogue a few weeks back.

"We talk about mental health in all of the wrong terminology," he said. "So much so that we scare people from actually seeking help. That's a problem.

"A big part of what we all have to do is … admit who we are and what we are, and who our family is and what our family is, and who our friends are and what our friends have gone through," Malloy said. "Once we do that, I think it's one of those paradigm shifts again."

Copyright © 2014, The Hartford Courant 

courant.com/news/politics/hc-mental-health-candidates-gov-20140308,0,4131097.story

Handout for Fairfield SEPTA mtg 3.13.13

CT Legislative Bills to Watch * Contact your Legislators *  Let them know your position on the issues that matter to you & your loved ones.  If you don’t let them know, they can’t help you.  * 5 calls or emails are all that is needed to change a vote (edited)

What to write or say:

My Testimony can be found by clicking the following link ( advocacy tab above). Feel free to take the information that makes sense to you, add your name, the town you live in, whether you oppose or support the bill and either email or call your Legislator.  If you don’t use your voice for your loved one, nothing will change.  Your voice is important and matters.

What Are the BIG Bills being considered this session that affect you?

*857     STEP OR ‘FAIL-FIRST’ THERAPY        Oppose, Strongly

*169     AUSTISM SPECTRUM DISORDER INS COVERAGE         Support

6388    CONCERNING INTERMEDIATE CARE FACILITIES FOR INDIVIDUALS WITH INTELLECTUAL DISABILITIES.        Support

6546    PHYSICAL THERAPY COVERAGE (MY TESTIMONY WILL CENTER ON BEHAVIORAL AND MENTAL HEALTH SHOULD BE COVERED IF THIS IS.)     Oppose as written, support with Mental Behavioral Health Therapies Included

*6517   PARITY COMPLIANCE & OVERSIGHT.       Support

*6001   RESIDENTIAL COMMUNITIES FOR YOUNG ADULTS WITH DEVELOPMENTAL DISABILITIES.       Support

1023    NON-PROFIT REVENUE RETENTION (pls READ TESTIMONY, VERY IMPORTANT BILL)       Support

262      REPORTING OF PATIENTS WHO POSE A RISK TO SELF OR OTHERS  Oppose

**374   IN SCHOOL BEHAVIORAL HEALTH SCREENINGS       Oppose- Strongly as written and probably with changes.

1029    HEALTH INSURANCE COVERAGE FOR AUTISM SPECTRUM DISORDERS      Support

6612    MENTAL HEALTH PARITY & OVERSIGHT       Support, Strongly

1087    RESPITE (SHOULD INCLUDE DEVELOPMENTAL, BEHAVIORAL & MENTAL HEALTH)       Oppose as written, Support with changes to include M/BH

Legislator Contact Info:

Senator John McKinney                         John.mcKinney@cga.ct.gov

Representative Tony Hwang                  Tony@tonyhwang.com   

Representative Brenda Kupchick            Brenda.Kupchick@cga.ct.gov

Representative Kim Fawcett                    Kim.Fawcett@cga.ct.gov

How to find what Bills are being heard that week or more info on the ones listed?

Go to www.cga.ct.gov

Type in the Bill numbers at the top of the page for the full bill, more info, etc.

Why Bother? Am I heard?

Remember even if a hearing happened the vote hasn’t.  Your legislators need to hear from you.

The gun lobby is flooding email boxes at the Legislature. Mental and Behavioral Health Advocates ARE NOT!  The feeling is that all is fine so what needs to be fixed. The reality is that as caregivers we have NO TIME. This is my way of making it as easy as possible for you to be heard.

Please visit www.turtles-lemonade.com for:

Hospital Checklist:  For when your loved one is released.  Now being used by several non-profits, Legislators and caregivers throughout the state.

Testimony: To get comfortable with the process.

Links: To important info and agencies.

Daily Blogs: On topics that affect our loved ones and us as caregivers.

Support: Through the information provided, group and individual work.

~​

​Handout #2  Turtles & Lemonade, Legislative Issues and what they mean to us this year.

What is Parity?

If you don’t accept the concept of insurance parity, you accept the premise that a person with stage 4 cancer whether 13 or 65, in excruciating pain goes to an emergency room to get care; and as soon as their pain is managed, whether that is in 4 hours, or after three days when the insurance company stops paying, pain free or not, they’re sent home with a prescription only?  No follow-up, no support, nothing, until the next time they are in so much pain they need to come back.  That could be hours, days, weeks, or months later. But make no mistake about it, until that person passes away they will be back and they will be in the ER with crisis level pain and all of the associated costs; real costs by insurance, family, personal, employment loss, etc.

You would probably say that this is unacceptable for any reasonable person.

Now substitute mental illness for cancer in the above scenario. That is the EXACT practice that we have in this country.  I’m testifying to that fact today.   

That is not parity.  That isn’t managed care. It is cruelty and certainly not what we expect to get when paying our premiums.

We would never accept a medications-only approach for our loved ones with cancer, without exploring the options and services available for the most successful outcome and quality of life available to them.

Insurance companies pressure the medical community to ignore proven successful best practices for quality of life and recovery when it comes to mental health services and maintenance.

Mental Illness/Behavioral Health Issues are no different from cancer, or heart disease or diabetes.  Society may not think that, or like that, but that is a fact.

Many caregivers feel that the goal of insurance companies with respect to Behavioral/Mental Health are to give them a prescription to mask the problem or manage symptoms, send them on their way, and hope they don’t return which means they’ve passed due to negligent care.  That is the exact opposite of our goal and our loved one’s goal. It is our feeling that the Insurance Industry’s position is that by using this model our loved ones sooner or later will no longer be a drain on their profits.  What other demographic would we, as a society, accept this for?

As with cancer, early detection and managed care work.  It is the most cost effective model for insurance companies, patients and society.

Enforce the insurance parity laws currently on the books in CT.  Begin true oversight.  Add substantial penalties and no loopholes.  Caregivers need to be able to trigger these penalties for our loved ones who are unable to for themselves.  If you chose to do nothing you need be content with the insurance companies wish for these services to ONLY be offered by the government.  Yet, remember that puts the burden for healthcare, support, housing, food, unemployment and SSI on to you.

We need these new oversight laws before the Legislature this session passed in order to put insurance companies on notice that they’re being watched and will be held accountable. We need teeth behind our parity laws with respect to behavior/mental health services. (CT OHA & Insurance Commission currently are where to report your issues).  Insurance companies have benefitted by the inability of those who suffer from chronic mental illness/severe developmental disabilities/behavioral issues to properly fill out insurance paperwork, advocate and be tenacious enough to break through their cumbersome system in order to access covered or available services and HIPPA laws which prevent caregivers from helping them.

We pay insurance premiums expecting to get what we pay for, yet rarely do when it comes to behavioral health.  Yet, if we don’t pay our premium we don’t get covered care.  Why are insurance companies that aren’t providing covered care still allowed to be serving the public that PAYS for their service?

Step-Therapy

When an insurance company changes a brand name med to a generic. The change is not by a Doctor. This saves the company money and has dire consequences when applied to any med that deals with the brain.  These meds are supposed to be prohibited from this practice.  That isn’t the case though.

Would this happen if insurance companies knew there was true oversight and more than a slap on their hand…if reported? Why are our CT non-profits held to a higher standard?

The true costs of providing proper mental health care coverage will decrease not increase insurance costs, reducing overall health care cost to all.  Providing proper coverage will also reduce the need and associated costs of emergency hospitalizations.

Great Resources

  • The Public Health Committee’s December 18, 2012 report.
  • The Connecticut Office of the Health Advocates January 5, 2013 report.
  • The 2003 Blue Ribbon Commission Report.

Mental Illness is just a character flaw. Get over it. Man-up!

As our nation continues to debate Mental Health Services few are speaking in public about the perception that Mental illness is a character flaw.  Mental Illness' are serious chronic medical conditions, like diabetes and heart disease.  Is a diabetic a weak person that can't control their pancreas and its production of insulin? If you're born to a family that has a genetic disposition to create cholesterol resulting in heart disease are you too weak of mind to control your endocrine system?  To follow that logic a person who suffers from Mental Illness is too weak to control the chemicals and neurotransmitters in thier brain; the most unexplored organ in the body.  Why is there no parity of coverage and care?  What is parity of care when discussing Mental Health?

Mental illnesses are serious medical illnesses. They cannot be overcome through "will power" and are not related to a person's "character" or intelligence. Mental illness falls along a continuum of severity. Even though mental illness is widespread in the population, the main burden of illness is concentrated in a much smaller proportion-about 6 percent, or 1 in 17 Americans-who live with a serious mental illness. The National Institute of Mental Health reports that One in four adults-approximately 57.7 million Americans-experience a mental health disorder in a given year.
http://www.nami.org/template.cfm?section=about_mental_illness

When you know better do better.

"Managed care has not caused a shift in the pattern of care but an overall reduction of care." *

*1999 Psychiatry Online, American Journal of Psychiatry, full article found here:  http://ajp.psychiatryonline.org/article.aspx?articleid+173643

This certainly has proved true over the last 14 years.  The reduction in care by insurance companies and the availability of cost effective private services has dwindled to an unacceptable low.  The financial burden is passed along to caregiving family members who have little or no say over their loved ones care. Most care in the Northeast is private pay;  Therapy, DBT, CBT, etc...

I urge you to read the World Health Organizations report on the burdens and costs of Mental Health Issues that was published in 2001:  http://who.int/whr/2001/chapter2/en/index3.html

Studies show that providing proper insured care for our mentally ill loved ones lowers health care costs for all.  It doesn't raise them.  It also lowers the costs to society by not placing the burden of continued crisis hospitalization costs on the very hospitals that care for our uninsured loved ones.  Effective Social Services are in place but funding has been drastically cut.   

On December 8, 1990 the State of Connecticut closed two facilities with the promise that the money would go to local level mental health support services and to the New Department of Behavioral Health.  In fact, even during the economic boom of the 1990's these services continued to see cuts.  As insurance companies profits rose, Mental Health Services were cut.  Since the recession we've seen more and more of our loved ones in shelters, on the streets, unemployed and left without insurance and services.  This is unacceptable.

Remember 1:4 Americans are diagnosed each year with a Mental Illness and 1:4 Americans are caregivers of someone with a Mental Illness.  

We need to be at the table. Our voices need to be heard.