Wednesday, December 26, 2012

My Life Changing Experience with NAMI's Family-to-Family

By Dawn Brown, NAMI HelpLine Information and Referral Specialist

Dawn and her son, Matthew,
who lives with schizophrenia.

During the holiday season, you sometimes receive an unexpected gift from an unlikely source. This year I did, but it was not wrapped in bright paper or found under a tree. It was provided by NAMI and given freely from one family to my family. My gift was the NAMI Family-to-Family Education Program, and the life changing impact it had on my family.

Over the course of son’s mental illness, I had spent countless hours and thousands of dollars trying to find help with little success. The Family-to-Family Education Program, however, is different from anything I had experienced. The program’s presenters were trained by NAMI and each have the life experience of loving and caring for a family member with a mental illness. The free 12-week course includes up-to-date information about mental illnesses and effective treatments, including units on brain biology and stages of recovery. However, the most valuable aspects of the course, for me, were the insights into the experience of mental illness, and the skills that are taught to help manage its impact. This is where the program is strongest. This is the information that has the power to change lives and circumstances. These are the things you cannot know unless someone who has lived the experience tells you.

On the first night, we learned that there are three stages of emotional responses we experience when struggling to cope with serious mental illness in our families and the emotional and practical needs we have at each stage. It was like a road map of where I had been, and where I was going. These stages are so relevant that after a few classes, I was able to recognize my own and others’ stages.

We were presented with information about mental illness as a brain disorder in which symptoms are expressed as complex behaviors. The concept of a “double-edged sword” illustrates how unfamiliar, unwanted behaviors are expressed and many healthy, resourceful characteristics are lost when mental illness strikes; the husband who was always able to deal with minor problems is now unpredictable and overacts to everything; the daughter who was always responsible now acts in bizarre, inappropriate ways. Understanding the “double-edged sword” helps us to separate the person from the illness.

Workshops focused on issues that are frequent challenges and offered practical, applicable skills and tools for me to put to use. In the problem-solving workshop, we practiced breaking down problems into manageable parts for focused effort. The empathy workshop helped me understand that my family member’s frequent refusal to take mediation and rejection of family support and community programs are driven by a need to salvage self-esteem.
Thought disorders interfere with normal communication, and in the communication workshop we practiced essential communication basics. Keep communication content simple by using short, clear direct sentences. Manage the “stimulation level” when communicating. Communications are our “boundaries” when dealing with others; boundaries must be clear and strong.

The members of the class included mothers, fathers, a sister, a brother, a wife, and a husband. Different backgrounds, educational levels, cultural groups, and ages were represented. Their family members struggled with a range of mental illnesses and were in different places in their recovery. Everyone was different, but, as I looked around the room, I saw a group of loving family members who were united in the battle against metal illness which was attempting to deprive their loved one of independence, relationships, hope and a future. They were all fighters. I was in good company.

Thursday, December 20, 2012

Newtown Tragedy: Push for Mental Health Reform

By Mike Fitzpatrick, NAMI Executive Director

It’s almost a week now since 20 children and six adults were killed at Sandy Hook Elementary School in Newtown, Conn.

America’s hearts are still broken.

Although news reports have gotten many facts wrong over the last week, it seems clear now that the young man responsible for the tragedy had lived with a form of mental illness since childhood.

The tragedy has resulted in an enormous push for the country to make a sustained effort to provide real solutions to our mental health crisis, as well as gun control. The test is whether Congress, state legislatures and the country as a whole are serious enough to face up to the challenge.

It’s not a new challenge. NAMI has been fighting on the mental health care front for many years, with victories and defeats. What’s tragic is that it has taken a horrible tragedy to wake others up.

This past week, NAMI has been working 24/7 to stoke the momentum. We have given close to 100 interviews to national and regional media outlets. We are talking with Senators and Members of Congress about legislation in the coming New Year. NAMI State Organizations and NAMI Affiliates have circulated press releases and other information to their own networks.

Again, it shouldn’t have taken a national tragedy to get this far, especially when we consider how many personal tragedies Americans affected by mental illness experience every year.

Start contacting Congress and state legislators now.

Keep the pressure on.

Tell them they need to step up to ensuring mental healthcare.

They need to make the availability of screening, early intervention, treatment, services and supports a national priority.

Family education and support must also be part of mental health care. Too many families don’t fully understand the nature of mental illness, what to do if they are concerned about a child and how to cope.

President Obama has pledged to use “whatever power this office holds to engage my fellow citizens, from law enforcement to mental health professionals to parents and educators, in an effort to prevent more tragedies.”

NAMI represents individuals who actually live with mental illness.

We represent parents and other kinds of family members. We have a long track record working with law enforcement, educators and mental health professionals.

We’re ready to work with the President.

Is the rest of the country?

Talk with your friends and neighbors. Ask them to help.

Selected News Links

USA Today: Mother's Anguished Plea Becomes Internet Sensation

NBC Evening News: Lack of Funding, Stigma Stymies Mental Health Care

Christian Science Monitor: Cracks in Mental Health Care

Wall Street Journal: Guns and Mental Illness

Christian Science Monitor: Was Lanza Lashing Out Against Treatment?

National Public Radio: Who Would Carry Out a School Shooting?

Bloomberg/BusinessWeek: Prevent Massacres; Expand Medicaid

Tuesday, December 11, 2012

The “Fiscal Cliff:” What Does It Mean for Americans with Mental Illness?

By Sita Diehl, NAMI Director of State Policy and Advocacy

Some call it a fiscal cliff, others call it an obstacle course. Whatever term you choose, our nation is facing an economic crisis.

As part of the government’s budget process, Congress and the White House must agree on revenue and spending by Dec. 31. If they don’t, bad things will happen to the economy affecting the lives of all Americans. The fiscal cliff—and proposals to avoid it—may have a huge impact on children and adults with mental illness.

Congress needs to hear from us now.

What is the problem?

It’s about money: revenue and spending. In addition to the end of tax cuts passed under President George W. Bush, automatic across-the-board reductions in discretionary spending are set to take effect on January 2, 2013 unless the President and Congress agree on a different plan. “Discretionary spending” mainly entails defense and entitlement programs such as Medicare that Congress budgets for every year.

At issue in the current debate is how to shrink the national deficit by $4 trillion dollars over the next 10 years. (The deficit represents the excess of spending over revenue. It contributes to, but is not the same as the national debt).

How did we get to this point? 

After a bruising battle in 2011 over the national debt and the deficit, both parties in Congress and the White House agreed to what is called the automatic “sequestration” process. 

Sequestration puts enough sacred cows on the auction block to hopefully force agreement on more carefully chosen revenue and spending levels.

What is at risk? 

If Congress doesn’t act by Dec. 31, resources that are vital to people living with mental illness will take a hit of more than eight percent. That’s a loss of hundreds of millions of dollars. Here’s the list:

  1. Mental health block grants through the Substance Abuse and Mental Health Services Administration (SAMHSA) which allow states to provide safety net and recovery mental health services not covered by Medicaid.
  2. Substance abuse prevention and treatment block grants through SAMHSA.  Because Medicaid pays so little for substance abuse services, the block grants play a large role in addiction prevention and treatment.
  3. Mental health research at the National Institute of Mental Health (NIMH)
  4. Individuals with Disabilities Education Act (IDEA) and special education grants to the states.
  5. Supportive housing programs funded through the US Department of Housing and Urban Development (HUD).
  6. Criminal Justice diversion grants through the Mentally Ill Offender Treatment and Crime Reduction Act (MIOTCRA).
  7. In Medicare there will be cuts to providers, not beneficiaries. Doctors will take a 27 percent rate cut.

What is protected in sequestration?

Medicaid the state/federal partnership that finances health care for low income children, mothers and people with disabilities won’t be affected.  Also protected are cash benefits in Supplemental Security Income (SSI) and Social Security Disability Income (SSDI). Veterans’ services are protected in sequestration and in every alternative plan.   

What about tax cuts?

Without going into detail, the tax cuts that have been in place for over 10 years are set to expire when the ball drops on New Years’ Eve. There are proposals in Congress to change national tax policy.

How will the various proposals hit our personal wallets? 

Find out by using this tax calculator developed by the Tax Policy Center.

What is the “Grand Bargain”?

By Dec. 31, the White House and Congress may agree to agree. IF there is an agreement the goal would be to add $1.6 trillion in new revenue over 10 years and trim health spending by $340 billion over ten years. In a process known as “budget reconciliation” Congress will need six months to a year to draft legislation to tackle the deficit with revenue increases and long- term savings to entitlement programs.

In addition to bringing in more cash by letting the Bush era tax cuts expire, a bipartisan grand bargain is likely to cut spending by changing Medicare, Medicaid and maybe income entitlements such as SSI and SSDI. 

Will those changes hurt people who live with mental illness?

While most members of Congress maintain these changes should not harm the most vulnerable beneficiaries, there is always a danger that an unrealistically high savings target could result in harmful cuts.

What changes are suggested for Medicare? 

Here are a few of the main ideas:

  1. Starting in 2020 draw a line on Medicare spending. If the limit is exceeded, the President and Congress would be required to cut costs.   
  2. Cut Medicare payments to hospitals, drug companies and other providers.  
  3. Raise the eligibility age to 67.  
  4. Charge higher Medicare premiums to beneficiaries earning more than $214,000 ($428,000 for couples).
  5. Tax high end Medigap policies to discourage beneficiaries from overusing health services.  

What about Medicaid?

Congress seems less likely to cut Medicaid than other programs, because it serves more than 60 million low-income Americans and promotes economic activity in state economies hit hard by the recession. But it is still a possibility. Some in Congress worry that cuts in federal Medicaid spending might make governors even more reluctant to expand the federal-state program as allowed under the new overall health care law

What are the key “takeaways” for people living with mental illness?

Going over the fiscal cliff would be bad news for programs many individuals and families depend on. In addition, a “grand bargain” that avoids immediate cuts to discretionary spending, would likely have long term effects on entitlement programs such as Medicare, Medicaid and perhaps Social Security Disability Income (SSDI) or Supplemental Security Income (SSI).  

Call to Action!

Contact your members of Congress urge them to avoid the across-the-board cuts to discretionary spending. Instead ask them to enact a “balanced” approach taking both revenue and spending into account.  In so doing, protect the most vulnerable by funding research and services that give Americans affected by mental illness the opportunity to recover and contribute to the vitality of their communities. 

Tuesday, December 4, 2012

Depression during the Holidays: Helping Family Members

 By Sarah Evans

If your family is as far-flung as mine, the holiday season may be one of the few times of the year you’ll see some relatives. In my family’s holiday pictures, the kids usually look completely different from one year to the next! Maybe one of your relatives has changed too and unfortunately, may be struggling with a mental health issue.

Possible signs may include a lower than normal mood, a lack of interest in family activities (withdrawal), crying spells or other symptoms of depression.

As someone who struggles with anxiety, having my family’s support is critical. Before I was first diagnosed, I was very defensive about my symptoms, and would brush off people’s concerns (with some serious teenage attitude). Here is some advice I can share about helping someone you think may be in distress. 

What You Can Do

  • Voice your concerns to another trusted relative. This person may have insight and suggestions about what your relative is experiencing. Remember, the goal isn’t to gossip –it’s to work together to help.
  • Talk to your relative. Seek out a quiet, private space. Ask how things are going in their life. If needed, you can prompt, “You seem a little sad or frustrated. Do you feel that way?” Don’t be judgmental or minimize issues.
  • Be ready to recommend resources. Your relative may know that something is “off,” but they may not know how to find help. Point them to the NAMI website: for general information and program resources.
  • If your relative agrees, offer to make an appointment for them with a local mental health care provider. If you can, offer to go with them to the first appointment – for moral support. Having a familiar face in the waiting room also can make a doctor’s visit much less intimidating.
  • As part of your conversation, you may want to mention seeing NAMI’s “You Are Not Alone” campaign which highlights famous historical leaders who have experienced mental health challenges, such as Abraham Lincoln. Your relative is not alone and should not feel ashamed.
  • Follow up! Get in touch with your relative after the holiday. Ask them how they are doing. If you discussed any steps for evaluation and treatment plans, ask if they have taken them. Be encouraging and supportive.

Stay Connected

Noticing a change in a family member can be uncomfortable. You may not know how to help or feel that it’s “not your place” to raise your concern with them, especially if it’s someone you don’t see very often. However, with respectful, empowering communication, you will be helping more than you think.

Sometimes, a relative who is struggling will ignore questions, or will become angry. Remember, the only thing you can do is to let someone know that you care, that you are there for them and that you support them.

I am so grateful that I have family members who offer consistent, patient support. I hope someone reading this will be able to offer such support to someone in their life this holiday season.

Sarah Evans is a M.P.H. candidate at the School of Public Health & Health Services at George Washington University.