INDONESIAN COMMUNITY CARE

FOR SCHIZOPHRENIA

Milestones for change

Bagus Utomo –Indonesian Schizophrenia FoundationUtomo.bagus @ gmail.com

Indonesia•Population 250 million•An Archipelago of 17,000 island•Primary Health Care 9,488, 30% without GP•46,5 have been trained in mental health •Psychiatrist 773 •Clinical Psychologist 450 •Psychiatric Nurse 6,500 •Severe mental illness prevalence 1-2 person per 1,000

KPSI or Indonesian Community Care for Schizophrenia is a support group for people with schizophrenia and their families and general public who is interested to support mental health awareness. KPSI currently using social media mainly facebook group as a communication tools between members.

What is KPSI

Stages of community development

http://www.themedfomscu.org/media/elip/Empowerment-20--20the-20holy-20grail-20of-20health-20promotion.pdf

•KPSI start from my family experience, my brother having schizophrenia in 1995

• I don’t know the diagnosis for 10 years and took alternative medicine

•One day I found information about schizophrenia from the internet and books I bought online.

•After taking medication my brother is now recovered.• I decided to share my family experience using online media, start from mailing list at yahoogroups, blog, website, and finally I moved my yahoogroups to facebook group in 2009.

Personal development

•In facebook group, the membership growing rapidly.

•Sense of solidarity grow and then they become willing to share experince. The feel the benefit of going through the recovery process together.

•We met offline for the fist time at 2009 attended only by 8 people. One of them was psychiatry student, dr Tika Prasetiawati.

•Then we met regularly offline with more and more people.

Mutual support group

2009

•We finally decide to rent a house for office secretariate in 2012.

•At the end of 2012 I received Guislain Award in Belgium. I use the award money to build support programme.

•In 2015 we register to the government as Yayasan Peduli Skizofrenia Indonesia or Indonesian Schizophrenia Foundation.

•We are focusing specifically on schizophrenia as an entry point to make a larger change in mental health movement in Indonesia.

•Considering that schizophrenia is the most stigmatized in our country. With huge number of Pasung (shackle and restrain) and homelessness.

•Our priority is on Promotion and Prevention. Educating families and patients.

Issues Identification and campaigns/Community organizations

•A lot of media coverage from national and local media.

•Government start to include us in their decision making. But it is a very slow process

•We decide to improve internal organization and building bigger members for stronger pressure in the future .

•Previously there is no mental health organization in Indonesia. So it was impossible to have an alliance.

•We put in our agenda, to inspire mental health consumer to form NGO in each province.

•It’s a long way from our target, but now we already have several support group for mental illness.

•Between 2014 and 2015 KPSI already build a network with Jakarta Legal Aid Foundation for training disability paralegal we plan to establish complain center for any discrimination in public services and human rights.

Participations in organizations/Coalitions Advocacy

NGOs ALLIANCE

KPSI

Ministry of Social Affairs

Mental Health NGO AllianceHealth Consumer NGO Alliance

Ministry of Health

Aliansi Disability Rights NGO Alliance

Ministry of Human Rights

Human Rights NGO Alliance

Free Legal Assistance

•For 5 years KPSI working with several stakeholders fighting for Mental Health Law. Finally we succeeded. House of Representatives passed Indonesian Mental Health Law in 2014.

•Government of Indonesia implement Universal Health Coverage in January 2014. It cover Mental Health Treatment. This is a good news. But there is still so many problems in the field

Collective political/Social Actions

•In 2016 National Disability Law passed by the House of Representatives. But KPSI was not included in the legislation making process. Not everybody understand that not all disability is visible

•Ministry of Health launch free pasung program 2014 because of huge pressure from international media covering Pasung (restrain) as a human rights violation. This program continued until 2019.

•Ministry of Social Affairs also launch free pasung program 2017. But both of huge projects only treat families as statistical number. After freeing the pasung patients, there is no social support for the families.

• In term of homelessness issues, Ministry of Social Affairs only have 3 shelters in Sumatera, Borneo and West Java. Very few local government interested to invest in building shelters. Jakarta the capital city only have 3 psychotic shelters all of them are overcapacity.

•There are a lot of shelters all over Indonesia build by the community. Some of them managed by religious groups. But most of them refuse to work with public mental health services. The conditions are so poor.

•Last year I was involved in an effort to make a ministerial decree to form a accreditation standart for homeless shelter. This decree expected to make a gradual changes in community based shelter. We hope that this decree can push community shelter and rehabilitation center who is still using a torture method, restrain and violating human rights to improve their service.

NOW 2016

Indonesian Online Support Group in Facebook•Komunitas Peduli Skizofrenia 19,200 members and 15 cities

•Komunitas Anxietas & Panic Disorder 1,349 likes•Anxietas Forum Indonesia 8,013 members•Fobia Sosial: Ayo Melangkah Bersama 917 members•Bipolar Indonesia 969 members•Solusi Bipolar 979 members•Bipolar Care Indonesia 4,086 members•Kelompok Kasih Insanis 321 members (Flores Island)

•Perhimpunan Jiwa Sehat 224 members•Komunitas Sehat Jiwa Cianjur•ID Mentality Care•Get Happy 461 likes•All About Penyakit Jiwa 7,385 members•MotherHOPE Indonesia 1,372 members•Harmony and diversity 162 members•Alzheimer Indonesia 2,693 likes•Peduli Trauma Support Center 1008 members

4 NGO – Seed for future Alliance

Next advocacy target:

National Disability Insurance

•Community empowerment should be done in community level. •Without the existence of consumer groups, mental health promotion and prevention is impossible. Empowered mental healh consumer are a potential partners for fighting stigma.

•All mental health related profession should support and nurture mental health consumer organization.

•All stakeholders, including mental health organization should form alliance for a bigger collective action.

•Entry point to government = human rights, Entry point to public = compassion

Summary

“Never underestimate the power of a small group of committed people to change the world. In

fact, it is the only thing that ever has.” ~ Margaret Mead

2 months ago my brother getting married after 21 years fighting with schizophrenia

Thank YouShukriyaa

Terima kasih

Komunitas Peduli Skizofrenia Indonesia – Pusat (KPSI)Jl. Limo No. 26 A, RT 005/02, Balimester,Jatinegara, Jakarta Timur - Indonesia(di belakang Holland Bakery Kampung Melayu) Phone: +62 21 851 4389Email: info.kpsi@gmail.comFacebook Group: https://www.facebook.com/groups/skizofreniaWebsite: http://www.skizofrenia.org

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