Early Psychosis Programs Are Changing Lives—But What if You Can’t Find One?

By Darcy Gruttadaro and Irene Casey | Jun. 11, 2018

 

Many people don’t know much about psychosis and schizophrenia, and what they do know likely comes from negative stereotypes. It may feel safer to ignore symptoms of hearing voices and seeing things that aren’t there and hope that they go away, rather than consider a mental health diagnosis—especially considering that early psychosis typically starts between the ages of 16 and 25, just as adolescents are becoming young adults.

Suspecting that you have early psychosis might feel like the end of your life as you know it. It can also be alarming to family and friends as they see noticeable and unexplained changes in the person they care about. But now more than ever, there is hope for those experiencing early psychosis associated with schizophrenia.

That’s because we now know far more about effective treatment programs, as well as the value of early intervention. This is changing the path for those experiencing early psychosis away from historically high rates of disability, distress and crises toward productive and independent lives.

This shift came about with the major multi-site study Recovery After Initial Schizophrenia Episode (RAISE). The RAISE study, conducted by the National Institute of Mental Health (NIMH), showed that by providing coordinated specialty care (CSC), people with early psychosis get significantly better. They remain in school, continue working and stay on track with their lives.

The key is early intervention. The sooner psychosis is identified, and young people are connected to CSC programs, the better the outcomes. The good news is that these programs are available in a growing number of communities to help more people, faster. The challenge is that they are not yet available everywhere.

What if There Isn’t an Early Psychosis Program in My Area?

Just because there isn’t a CSC program near you doesn’t mean you won’t find effective treatment and support. You can build a treatment team and plan from different resources in your community. Look at the components of CSC and decide which ones are most important for you. Don’t be afraid to ask a trusted family member or friend to help you. NAMI is here to assist as well; here are seven steps to help you build a DIY treatment plan:

1. Learn as much as you can about CSC. At www.nami.org/earlypsychosis, you can find information, tip sheets and personal stories about early psychosis. You can also look on NIMH’s website to read about the RAISE study. Gathering information helps you know what questions to ask health care professionals as you look for care that works for you.

2. Reach out to CSC programs in your state. Even if the CSC programs aren’t near you, programs in your state may be able to share more with you about CSC. They might also have suggestions on how to find care in your community. The NAMI HelpLine has an updated list of CSC programs; email or call us for more information (info@nami.org or 800-950-6264).

3. Build a treatment team that will work with you. Look for a community mental health center, therapist and psychiatrist that have experience working with young people and are open to considering new approaches to care. The CSC model values you as an equal partner in your treatment. It focuses on empowering you to make decisions with your treatment team and giving you the tools needed to reach your life goals. Find professionals who share those values. For example, a good psychiatrist should be willing to partner with you to find the right medication at the right dose for you. Follow the CSC program motto of “start low and go slow”—meaning, start a medication dosage at its lowest therapeutic level.

4. Stay focused on reaching your goals. CSC programs recognize the importance of providing you with support that allows you to stay in school or working. Thus, supported education and employment are key components of these programs. Whether you want to continue in school or find a job, resources outside of CSC programs can help you. Find a therapist, social worker, supported employment program or education program that understands how to help you—one that offers the specific skills, coping mechanisms and supports you need to reach your goals.

5. Encourage your family to learn about how they can support you. Your loved ones want to support you, but mental illness may be new to them, and they may not know what helps and what hurts. CSC programs recognize the role that families can play in your recovery. Ask your local NAMI Affiliate about education programs for families. It would be best to find programs designed for families of young adults, so your family can connect with others on similar journeys. If you’re comfortable with it, you can also ask your therapist for a session with you and your family. This can be a safe space to talk about what you need from them.

6. Connect with others who have had similar experiences. For any mental health condition, including schizophrenia, peer support is an essential step toward recovery. It lets you learn from others’ experiences and reminds you that you aren’t alone. Recovery can have its difficulties, so it’s important to connect with others who’ve been there. Ask your local NAMI Affiliate whether they have support groups for youth and young adults or see whether support is available through your school. There are also online options like NAMI’s discussion groups. Also consider visiting OK2Talk.org, an online community of young people sharing their mental health stories.

7. Continue to look and advocate for CSC programs in your area. NAMI is advocating for the expansion of CSC programs, and new programs constantly are being formed. Be fearless in advocating for the treatment that will work best for you and provide you with the support you need to get better. Be upfront with what you are experiencing and the kind of treatment you need. Explain that you are interested in developing a treatment plan that includes various components of CSC because it is proven to be effective. See if professionals would be willing to learn more about the CSC model or talk with a CSC program. Ask if they have experience working with young adults and what their treatment philosophy is. Let them know that the NIMH has guides, manuals and resources online so that mental health centers and clinicians can learn about the CSC modes.

CSC programs typically provide two years of intensive services and supports; this length of time helps ensure the development of the skills and understanding needed to manage psychosis associated with schizophrenia. Like any serious health condition, there will likely be times when more intensive levels of care are needed, and adjustments must be made in your treatment plan. What’s important is having early access to the services and supports you need to reach your full potential, and that you understand how to manage your condition.

Looking Ahead

NAMI is extremely pleased with the progress our nation is making in expanding early psychosis CSC programs. The RAISE study established a new standard of care that every young person experiencing psychosis should receive—and there is no reason to accept anything less. We wouldn’t for any other serious health conditions like cancer, heart disease or stroke. NAMI is advocating to ensure that every mental health center in America is delivering CSC. And our advocacy is making a positive difference. In 2015, as the RAISE data were released, NAMI and NIMH held a congressional briefing and asked for a doubling of the federal funding available to expand CSC programs. Congress agreed and doubled the funding from $25 to $50 million. NAMI is working to secure insurance coverage for all components of CSC, and we are seeing tremendous progress as we work with multiple national insurance organizations.

We are determined to see every young person experiencing psychosis identified early and connected with effective care. Until early-psychosis CSC programs are available in every community, we want young people and their families to know what to do while we push for them to exist everywhere. We can’t afford to wait.

 

NAMI has developed helpful resources to raise awareness of the early warning signs of psychosis, the key components of CSC and how to find a CSC program in the community.
Visit www.nami.org/earlypsychosis.

 

Darcy Gruttadaro is the Director of the Center for Workplace Mental Health at American Psychiatric Foundation. Irene Casey is HelpLine coordinator at NAMI.

Note: This piece is a reprint from the Fall 2017 Advocate. 

 



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Comments
michelle&liz
please help us find a support group, Michelle-daughter - 27yrs old, recently diagnosed with schizoaffective disorder. liz -mom needs support and knowledge of Michelle's condition we are in Omaha Nebraska, thank you!
8/1/2018 3:22:49 AM

Rossa Forbes
I am heartened to see that medication advice is changing, so that it's "start low, go slow." This is in sharp contrast from what has happened over the past few decades. I would point out the lowest therapeutic dose is what the doctor and pharmaceutical company determines, not what might be the lowest "effective" dose for the person concerned. Many people are taking antipsychotic medication well below the lowest "therapeutic" dose, and are managing just fine. Having experienced, from a parental perspective, a European early psychosis program, I have the following comments on the article.
1. It is directed to the user, on the assumption that an 18 to 25 year old going through early psychosis is interested in, and capable of, undertaking the suggestions put forth in the article. That's not my experience, and I suspect the same can be said for other parents. If these young people are able to rise to this level of self advocacy, their would be no need for such programs. 2. It assumes that these same young people will be able to carry on with school work and jobs. Some can, but many can't, even if supported. These programs often raise expectations, but cannot deliver. 3. My experience with a European program which my son was enrolled in from 2004 - 2006 was that you could not enroll unless you were medicated, and the program's doctors determined what was best for you regarding the drug and the dosage. Input from clients and other non-professionals and "new ideas" in terms of outside treatment (alternatives) were discouraged. Rossa Forbes, author of The Scenic Route: A Way through Madness
6/28/2018 4:43:33 AM

Alex
I always been in love with Psychology
I love to help
6/27/2018 9:46:29 PM

Blkatchen
Where can we find a csc program in the Chicago metro area?
6/27/2018 7:51:28 PM

Jennifer S Dorsey
NAMI and other organizations seem incredibly supportive of HIPAA and PAD's - however, I have a bi-polar relative who has recently gone off Depakote and is currently in a psychotic state. We were forced to call the police after she began speaking in tongues, physically attacking her brother and accusing both he and her son of being "imposters". After a week, the hospital released her despite the fact she still claims to be working with the FBI to obtain DNA and prove her family members are really imposters. Thanks to HIPAA we are all helpless. We could not obtain any information from the hospital staff, we don't even know who her psychiatrist is!! She has missed a court date and will lose visitation rights to her children as a result. We have already lost her uncle to suicide as a result of his bi-polar illness - I CANNOT stand back and watch this play out right before our eyes and do nothing because her rights are being protected???? We ADORE her but thanks to HIPAA we can only watch this horrific tragedy unfold... please please help - what can we do??? Helpless in New Jersey.
6/21/2018 4:29:32 PM