The document summarizes the work of KPSI (Indonesian Community Care for Schizophrenia), a support group for people with schizophrenia and their families in Indonesia. It describes how KPSI started as an online support group on Facebook and Yahoo groups. KPSI has since expanded offline, registering as a non-profit foundation in 2015. KPSI advocates for better policies and treatment for the mentally ill in Indonesia, and helped pass the country's first Mental Health Law in 2014. However, more work remains to be done in areas like homelessness and improving community-based shelters.

1. INDONESIAN
COMMUNITY CARE FOR
SCHIZOPHRENIA
Milestones for change
Bagus Utomo –Indonesian Schizophrenia Foundation
Utomo.bagus @ gmail.com

2. 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

3. 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

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

5. • 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

6. • 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, drTika
Prasetiawati.
• Then we met regularly offline with more and more people.
Mutual support group

7. 2009

8. •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.

9. •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

10. •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 .

11. • 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

12. NGOs ALLIANCE
KPSI
Ministry of Social Affairs
Mental Health
NGO Alliance
Health Consumer NGO Alliance
Ministry of Health
Aliansi Disability
Rights NGO Alliance
Ministry of Human Rights
Human Rights
NGO Alliance
Free Legal Assistance

13. • 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 HealthTreatment.
This is a good news. But there is still so many problems in the
field
Collective political/Social Actions

14. • 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.

15. • 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.

16. NOW
2016

17. 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)

18. • 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
• PeduliTrauma Support Center 1008 members

19. 4 NGO – Seed for futureAlliance

20. Next advocacy target:
National Disability Insurance

21. • 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

22. “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

24. 2 months ago my brother getting married
after 21 years fighting with schizophrenia 

25. ThankYou
Shukriyaa
Terima kasih

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