Tuesday, November 25, 2014

What I’m Thankful for at NAMI

By Mary Giliberti, J.D., NAMI Executive Director

This Thanksgiving season, I am deeply grateful for those who share their stories and experiences to bring hope and help to others. I appreciate those who give time and talent so others may find the journey through mental illness a little less difficult.

This week, I worked on the NAMI HelpLine (1-800-950-6264) and gave thanks for all of our NAMI volunteers who answer calls, teach classes and lead support groups. I spoke to a mom in Texas who was exhausted by her daughter’s recent hospitalization and realized that she needed to get some support so she could be a better caregiver to her daughter. I was so thankful for the support group leaders in her community and in communities around the country.

At our Training of Trainers education event each year, I marvel at all of the ribbons that some of our volunteers wear, indicating that they teach and lead multiple NAMI programs. I ask them when they sleep and they invariably tell me that they get much more than they give. I hear the same from NAMI leaders and volunteers at state meetings and our national convention. And I am so deeply grateful for the transformational power of giving that brings healing and meaning to the experiences of individuals and families affected by mental illness.

I am thankful to prominent individuals who speak out at considerable cost to themselves. We appreciate State Senator Creigh Deeds of Virginia, who is advocating for better mental health care so no family will encounter the barriers that he did in seeking help for his son, Gus—barriers that led to Gus’ death late last year.

I am also grateful to Naomi Alexis, the sister of Aaron Alexis, the man who was sadly involved in the Washington Navy Yard tragedy in September 2013. She has spoken out in the national news media, noting that shame and lack of understanding of mental illness hurt her family’s efforts to seek help for her brother despite her requests. She urged families to contact NAMI for information and assistance.

I also deeply appreciate the inspirational stories that bring people hope for recovery and a passion for change. Noted psychologist and mental health advocate Dr. Patricia Deegan shared with NAMI convention-goers in September her personal journey and the critical role of her grandmother, who repeatedly urged her to go to the grocery store as Pat struggled with apathy and her diagnosis of schizophrenia. One day, Pat decided to go to the store and that small step led to another. Now Dr. Deegan develops tools to help people with mental illness communicate with their doctors about their goals and ensure that the treatment serves those goals.

NAMI’s good friend Patrick Kennedy uses his experience with mental illness and substance use to call us to advocate for equality and true parity, reminding us that discrimination against people with mental illness is the civil rights issue of our time.

As we begin the holiday season, I am grateful for the hope that starts with each of us when we bring light out of darkness and despair. I am thankful for all of the life experiences, difficult and inspirational, that have brought us to this place in life where we can be part of the NAMI movement—a movement that holds a hand, squeezes a shoulder, cries in solidarity, claps in celebration—a movement that cares and fights for a better tomorrow for all affected by mental illness. Happy Thanksgiving!

Friday, November 21, 2014

Highlighting the Importance of Early Intervention

By Joni Agronin, NAMI Communications Coordinator

Mental illness affects young people at an alarming rate. One half of all lifetime cases of mental illness begin by age 14 and 75 percent begin by age 24.  What’s even more astounding is that even after an onset of symptoms, the average young person does not get treatment until eight to 10 years later.

Donna Morton’s daughter lives with bipolar disorder. Even though she was diagnosed at age 12, it wasn’t until much later in her life that she finally received the support she needed from Henderson Behavioral Health.

After her first psychotic episode, Casey Morton was hospitalized for almost a month. “Toward the end of her stay we had to figure out what to do,” said Donna.  “She had broken up with her boyfriend who was also sick.  She couldn’t come home with me and she couldn’t live alone so we didn’t know what to do.” 

Donna happened to have a friend who worked for Henderson Behavioral Health and put her in contact with a woman named Celina King.  “This woman was a saint. She was so comforting and beautiful toward my daughter.” After her evaluation with Celina, Casey was accepted into their treatment program and moved in to their group home.  Donna remembers her daughter saying, “Wow, this is a program made for me.”

Henderson Behavioral Health is an organization in south Florida that believes a focus on early intervention can make an invaluable difference in the lives of individuals with mental illness and their families. Getting young people the treatment and supports they need in a timely manner drastically improves their futures and can prevent crises and other challenges.

Henderson is one of four exemplary programs being recognized by Connect4MentalHealth, a partnership between numerous mental health organizations that promotes innovation in our communities to help those living with mental illness. They have helped more than 700 adults each year live independent lifestyles in their supported housing program.

Casey currently lives in one of these supported housing facilities and is doing very well.  “The model that they have, starts people with a high level of support and make sure that they stay there until they are ready to take the next step,” said Donna. “Structure is so important and has made a huge difference for my daughter, she has really benefited from that.”

Donna said the greatest thing Henderson has done for her family is given them hope. “Sometimes the strain just becomes so much that you get worn down and wonder if things will ever improve but I have really seen maturity in my daughter. It’s really exciting for me as a mother watch the growth of my daughter.  It has taken her to a new level of responsibility for her own recovery.”

With the help and support of Henderson, Donna says her family is able to really enjoy the time they have together now. “The impact of programs like this extends beyond the individual. It really has a ripple effect and impacts the entire family.”

“You can get tied up with the negative sometimes but with assistance it takes things in a much better direction.”

Together with the National Council for Behavioral Health (National Council) and Otsuka America Pharmaceutical, Inc. and Lundbeck, NAMI affirms the need for localized, innovative, effective and sustainable approaches to address serious mental illness. Through Connect 4 Mental Health (C4MH),a nationwide initiative, we have joined together to call for communities to prioritize serious mental illness and encourage promising practices that help people, like Casey and Donna live healthier, fuller lives.

Medicare Part D Plans Are Changing. Open Enrollment Ends Dec. 7

By Jessica W. Hart, State Advocacy Manager

Are your prescription medications covered by Medicare? If they are, you should check your plan because Medicare Part D plans are changing and there might be a better option. Use this guide to compare plans and find one that is best for you.

If you or a family member receives Social Security Disability Income (SSDI), prescriptions are probably covered by a Medicare D plan. Medicare Part D open enrollment is the time of year when you can look at prescription drug plans in Medicare and keep your current plan or sign-up for another one. In 2015 all Part D plans are changing so now is the time to look. Plans are making changes to benefits and costs, and there are new plans in many areas of the country.

So, how could your Medicare Part D plan change?

Your current plan could change:

  • The monthly premium
  • The annual deductible
  • Your share of the costs (co-payment or coinsurance)
  • The list of the drugs it covers (formulary)
  • Additional coverage, if any, it offers beyond the discounts in the coverage gap
  • Use of policies that may restrict access to certain drugs, such as:
    • Requiring your doctor to justify why you need a certain drug before the plan will pay for it (prior authorization)
    • Requiring your doctor to prescribe a different drug in the same class of drugs first (step therapy)
    • Only letting you buy a certain amount of a drug at a time (quantity limits)

Use Medicare's plan finder to check to see what your plan is and if it still meets your needs. Enrollment for Medicare prescription drug coverage is open until Dec. 7, 2014.

The 2015 Medicare Prescription Drug Annual Open Enrollment guide is an easy read to help you explore the options. The guide is produced by Medicare Access for Patients Rx (MAPRx). NAMI is a member of MAPRx, which brings together organizations serving beneficiaries, family caregivers and health professionals to improve access to prescription medications and safeguard the well-being of Medicare Prescription Drug Coverage (Part D) beneficiaries.

Read more about the changes to Medicare Part D.

Friday, November 14, 2014

2015 Health Insurance Open Enrollment Starts Nov. 15

It’s time to look at your health care needs and options.

If you don’t have health insurance or are looking for more affordable health insurance and haven't looked at the Health Insurance Marketplace―open enrollment is the time to look. During “open enrollment” you can buy private health insurance through the marketplace in each state. Depending on your income you can get financial help to pay for health insurance. If you have affordable employer-provided health insurance or are already covered by Medicaid or Medicare you cannot receive financial help paying for private health insurance coverage.

Do You Already Have Health Insurance through the Marketplace?

If you do, you must re-enroll every year or you will be automatically re-enrolled. It is also important to report any changes to your income to the marketplace.

  • This is a good time to check your health insurance coverage and see if it still meets your health and mental health care needs.
  • Anyone can change health care plans during open enrollment, but most people will be re-enrolled automatically if they take no action.
  • Carefully read all health insurance notices and updates.

Check Your Coverage

  • Even if you like your health plan, new plans may be available and premiums or cost sharing may have changed since last year.
  • Even if your income has not changed, you could be eligible for more financial assistance.

If You Live with a Mental Illness, Pay Attention to Possible Changes

  • Are a broad range of health and mental health care providers included in the health plan’s network of providers?
  • Are there enough medical specialists in the network to meet your needs?
  • Are needed medications included in the plan’s list of covered prescription drugs?
  • Is there adequate access to non-clinical, mental health-specific services and supports?
  • Does the plan have service limits, such as caps on the number of office visits for therapy services?
  • Are mental health and substance use services covered to the same extent as other “physical” health benefits are covered?

Where You Can Get Help

Health insurance can be complicated. If you or your family member needs help understanding your options, Healthcare.gov can help. It breaks down health insurance terminology and will tell you where you can get help in your local community. Each state has health insurance “navigators” to assist individuals with enrollment in health insurance. You can also call the 24-hour Healthcare.gov phone line for help at 1-800-318-2596.

The Kaiser Family Foundation also put together some great resources including a video explaining health insurance and a calculator you can use to figure out about how much health insurance will cost for you if you buy it through the Health Insurance Marketplace.

Important Dates to Remember

Nov. 15, 2014
Open enrollment begins

Dec. 15, 2014
Enroll before this date to have coverage Jan. 1, 2015

Feb. 15, 2015
Open enrollment ends

More information on specific topics for each state can be found at the National Disability Navigator Resource Collaborative.


Monday, November 10, 2014

My Time of Service is Over, But My Time to Serve Never Ends

By Daniel Williams
Taken from The U.S. Army flickr page.
Photo by Sgt. Cody Quinn

As an Army veteran who served in Iraq in 2003 and 2004, I saw many things. Some good, some bad but all would change my life forever. Now, when holidays come up I look at these experiences in a more hopeful light.

This is what I would love to see for Veterans Day.

On this day, our nation takes time to say “thank you” to recognize veterans and service members for their dedication to duty. In towns across this great nation there will be parades of veterans who have served in World War II, the Korean War, Vietnam, Desert Storm, Iraq, Afghanistan and some who have served in ways we will never know. They served us, only asking that our nation should honor the contract under which they enlisted.

In the parades, you will see floats, nice cars and bands from all over. You will see military vehicles and flags from all of the different branches of the military: the Army, the Navy, the Marines, the Air Force, the Coast Guard, the National Guard, the Reserve, prisoners of war and those missing in action. It is an opportunity for civilians in communities nationwide to see where and when their family, friends and neighbors have served. Veterans’ services organizations (VSO) join the parade as vets serving their fellow vets. The parade in my town will have a representative of the NAMI Veterans and Military Council along with the Disabled American Vets (DAV), Iraq and Afghanistan Veterans’ Association (IAVA), AMVETS, American Legion, Wounded Warrior Project and others.

On this day, I ask that you not only show your gratitude to our nation’s veterans by going to these events, but also think how you can help them directly. Every day, 22 veterans die by suicide. These people served our country and put their lives on the line for our freedoms. We can honor them better.

Take time to learn about benefits and services available to veterans and explore what is still needed. Ask a veteran what would help them be more supported by their own community. Let them know you are with NAMI. Use your support group skills to listen if they want to talk about the issues that haunt them—and respect their silence if they don’t. If you recognize the veterans in your life today, when the next Veterans Day rolls around, you will have been part of honoring their service.

From this veteran and NAMI, I would like to thank all veterans by standing with vets and their families in times of need as well as in times of good health. To NAMI, every day is Veterans’ Day. We honor and support our nation’s veterans year round. And like others on the NVMC, even though my time in the service is over, my time to serve veterans will never end.

On this Veteran’s Day, in a country where people have made the ultimate sacrifice to ensure our freedom, I urge you to ask yourself these questions:

Will you serve our nation’s veterans?

Will you take time to understand them?

Will you help them get the care they need and deserve?

Will you help their families and love ones as well?

Do it for the same reasons they did: to support the person standing to their left and their right; to make sure that you and I have the freedoms that we enjoy every day.

Daniel Williams is the chair of the NAMI National Veterans and Military Council (NVMC).

Thursday, November 6, 2014

Putting the Person at the Center of Treatment

By Joni Agronin, NAMI Communications Coordinator

Asten Jones, peer support specialist at The Center for Health Care
Services in San Antonio Texas.
Ask anyone who has struggled with mental illness or addiction what the most important part of their recovery was and many times they will tell you it was finding a treatment plan that worked with them as an individual and not just as a part of the system.

Person-first, or person-centered, treatment programs allow for people to work toward recovery at their own pace and utilize the resources that will best help them get better. Asten Jones who currently works in San Antonio, Texas knows from personal experience the importance of treating the whole person.

Asten now works as a peer support specialist at The Center for Health Care Services (CHCS), a position she said she was shocked to have been awarded after using services at CHCS herself.

CHCS is one of four exemplary programs being recognized by Connect4MentalHealth, a partnership between numerous mental health organizations that promotes innovation in our communities to help those living with mental illness or substance abuse challenges. CHCS has pioneered the use of integrated services intended to holistically improve the lives of those with serious mental illness that were previously facing negative outcomes. CHCS has assisted more than 21,000 individuals through its numerous services and programs.

Asten lives with bipolar disorder and struggled with heroin addiction on and off in different periods of her life. She was first brought in to the detox center at CHCS after her and her mother were caught doing heroin in the home of a woman her mother was providing hospice care for as a registered nurse.

After completing detox, Asten was assigned a case worker from CHCS named Blanca Rosa who she explains completely changed her life.

“I told Blanca was still doing heroin and still not taking my medication and she never threw me out,” said Asten.  “She told me I had the capability to do great things, but I never believed her.”

After Asten’s suicide attempt in 2012, she called Blanca who got her back in to a rehab program and stayed by her side for the entire journey. “She picked me up from homeless shelter and took me to rehab and stayed with me throughout the whole intake process so I wouldn't run,” Asten explained. “I stayed for 90 days and then called her again. I realize how rare it is for a caseworker to stay with you and she was really astounding.”

During her recovery, Asten used five different services offered by CHCS including the wellness clinic, restoration center, in-house recovery program, case management and job readiness training. 

CHCS is having huge amounts of success with the community in San Antonio by offering these supports and more:
  • A jail diversion program. The Bexar County Jail (in Texas) was once immensely overcrowded but now has a continuous surplus of roughly 1,000 empty beds.
  • A $50 million reduction in jail and inappropriate emergency room costs since 2008.
  • Training of more than 2,500 law enforcement officers to work successfully with people living with serious mental illness.
  • A safe sleeping area for more than 700 individuals in its Prospects Courtyard, a safe place for homeless individuals to seek medical and psychiatric treatment as well as fulfill their basic living needs.
In her role as a peer support specialist, Asten uses her personal experience to advocate for those who need help. “I like just being able to help them,” she said.  “It’s a cross between being a friend and being an advocate.  I am their friend but I am speaking out the loudest for them because I know what it’s like.  I know what it’s like to be homeless and not have shoes and not have clean socks.”

Asten said the integrated variety of services offered at CHCS is what truly makes it successful. “There is no timeline, they can go through any [program] as many times as they need and no one is going to judge them for that.  I am going to have a mental illness for the rest of my life. Many people are dually diagnosed with mental illness and substance abuse and the center is willing to help them too, thank God.”

“It’s really all about what the person wants. When you’re working with hundreds or thousands of people you need to be flexible and [CHCS] is,” said Asten.

The one piece of advice that Asten would give to someone hoping to reach recovery: “Anyone can do it.”

Together with the National Council for Behavioral Health (National Council) and Otsuka America Pharmaceutical, Inc. and Lundbeck, NAMI affirms the need for localized, innovative, effective and sustainable approaches to address serious mental illness. Through Connect 4 Mental Health (C4MH),a nationwide initiative, we have joined together to call for communities to prioritize serious mental illness and encourage promising practices that help people, like Asten, live healthier, fuller lives.

Tuesday, October 28, 2014

Stopping Schizophrenia in Its Tracks

By Darcy Gruttadaro, Director, NAMI Child and Adolescent Action Center

For those experiencing psychosis, early identification and intervention matter—a lot. It lessens the long-term severity and often prevents psychosis from worsening. An effective early identification and intervention program should include the following coordinated array of services and supports:

  • Supported education and employment.
  • Cognitive behavioral therapy.
  • Peer support.
  • Family support and education.
  • Case management.
  • Community outreach.
  • Low dose antipsychotic medication.

These services work so well because they are offered together to provide the skills and support that youth and young adults need to get better. They also take into account the context of a young person’s life and the key role that peers and families play in recovery.

FEP programs reduce costly hospitalizations and put youth and young adults with psychosis on an early path to recovery.

When you fund upstream interventions, you can prevent the tragedies associated with untreated mental illness: school failure, unemployment, hospitalizations, homelessness, jail and suicide. Investing in effective programs that intervene early produces far better outcomes for individuals, families and communities.

There are effective strategies available, so why aren’t more young people getting help? One of the main reasons is that these services and supports are simply not available in communities. However, there has been progress made recently that to help ensure the availability of these resources in more towns and cities across the U.S.

One significant event is that Congress has now required states to use 5 percent of their Mental Health Block Grant for First Episode Psychosis (FEP) programs. This means that states are obligated to set aside a certain amount of their federal funding to address the importance of early intervention.

How Is NAMI Helping

We recognize the urgency in expanding these programs. Our advocacy work and involvement in these programs is happening at all levels of the organization.

NAMI NYC Metro is partnering with OnTrackNY, an FEP program, in providing support groups and peer support for youth and young adults experiencing early psychosis. NAMI Connecticut is offering peer-run young adult support groups located close to FEP programs to make it easy for young adults to join. NAMI Minnesota has partnered with an FEP program and is creating education and support programs for youth experiencing early psychosis and their families.

Oregon was an early adopter of these services and supports, having witnessed the success of these programs in Australia. Tamara Sale, the director of the Early Assessment and Support Alliance (EASA) in Oregon and a former long-time NAMI Oregon board member, shared how their program works successfully with youth and young adults experiencing early psychosis.

The EASA program recognizes that it can be difficult to engage youth and young adults experiencing early psychosis, so it uses strategic community approaches that meet young people where they are with messages of hope and relevance to their lives. They are flexible and persistent, even with youth and young adults that seem entirely uninterested in mental health care.

What You Can Do

FEP programs exist in a handful of communities and more must be done to spread these programs across the country. Here is how you can make sure that happens.

  • Learn more about FEP programs. Understand why these programs are pivotal in creating better outcomes.
  • Email or Tweet your Congressional members to thank them and to ask for their continued support of FEP programs.
  • Connect with your NAMI Affiliate in advocating at the state and federal levels for FEP programs so that youth and young adults experiencing early psychosis can access effective services and supports.

We can and must change the trajectory of people’s lives by intervening early with recovery-oriented and effective services. We simply cannot afford to wait.