January 2016 Inclusion of persons with psycho-social disabilities - Good Practices (Category of Respondent: Self-advocate / self-identifying as living with psycho-social disability)
The Center for Advocacy in Mental Health (CAMH) is the research, training and advocacy department of the Bapu Trust. The Center for Advocacy in Mental Health, Pune, India, has been a hub for Asia region advocacy around the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). The objectives of CAMH are:
• Build self advocacy movements in India and the Asia Pacific region in the context of
the UNCRPD
• Provide a rights-based language for mental health in India
• Create an informed political discourse on Citizenship, Development, and Mental Health
• Address the information gaps and needs of communities on mental health and well being
• Build community based and holistic methods of offering support, and / or healing from (mental)
health problems
The CAMH is conducting a survey on ‘Good practices on the Inclusion of persons with Psycho-social Disabilities’. This survey explores your views and experiences on Good Practices that enable the Inclusion of persons with mental health problems / psycho-social disabilities. Your participation in this study is crucial to understanding the evolving state of inclusion of persons with psycho-social disabilities: What facilitates their full and effective participation in families and communities?
Please note that most questions ahead allow you to choose more than one option in response. You may feel that this survey does not allow you to respond fully on the topic of Inclusion of persons with psycho-social disabilities. If that is the case, we will be happy to have you write your piece separately and mail it to us in addition to your survey responses.
A big motivation for this study is to find out, what means “Reasonable Accommodation” (RA) for persons with psycho-social disabilities. In the disability movement, implementing RA is considered as key for full and effective participation. What is RA for persons with psycho-social disabilities?
Reasonable Accommodation has a few key elements, in the way it is defined in the Convention on the Rights of Persons with Disabilities.
(1) The person with disability should express a need for support. (2) The person providing support should give as much as necessary, neither more nor less. (3) The given support must not cause too much of an extraordinary burden. (4) The support needs to last for only as long as the person needs it.
RA is a way of spreading the opportunities for Inclusion of persons with disabilities in society. It is also a way of ensuring that a person can enjoy all full freedoms and human rights on an equal basis with all other people of the country.
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Required
Consent to participating in the survey * I consent to participate in the survey. I understand that the data I provide will be used in summarizing findings and analysis; and that I will not be identified by name or place or any other personal marker. I understand that some questions may trigger troubling memories. I understand that I may leave out some questions, that are not required questions, if I am not very comfortable answering. I understand that this study will be disseminated in a variety of settings, local, national and international; including internet and social media. Yes Name * Place * Age Sex Female Male Other: Relationship/Family * Single Married In a relationship Living with family Living with flatmates / paying guest / hostel Living alone Other:
Self Perceptions of Self This is to help us get an insight into how you see yourself and your relationships with others. (1) Do you feel confident and trusting of yourself? (To understand how you perceive yourself.)
Not at all. < 1-- 2 -- 3 -- 4 -- 5 --6 --> Yes absolutely.
(2) Do you think other people are confident about you and trust you? (To understand how you experience others.)
Not at all. < 1-- 2 -- 3 -- 4 -- 5 --6 --> Yes absolutely.
(3) Interactions with others are easy … ‘Easy’, meaning, easy to communicate, be understood, have overall safety and comfort level.
At home.
In the neighbourhood.
At social gatherings.
At work.
Other:
(4) In interactions with others, please choose how you often feel … * ‘Others’, meaning, those who are outside your immediate circle of trusted people.
Angry
Embarrassed
Humiliated
Happy
Anxious
Safe
Guilty
Blamed
On guard
Other:
(5) You are individually and personally responsible for specific tasks…
At home.
In the neighbourhood.
At work.
At social gatherings
Other:
(6) You feel respected when others … *
Listen to you.
Talk to you.
Acknowledge your presence.
Ask you what you think.
Let you express your views.
Acknowledge your feelings.
Say they understand.
Other:
(7) On privacy
You have always had privacy and space to yourself at home.
You still have privacy and space to yourself at home.
When you are with friends/close others, they respect your need for privacy and space.
You have privacy when you need it the most emotionally.
You wish you had privacy when you are trying to sort out what's happening with you.
You don't enjoy privacy the way you wish to.
Privacy at home is not so important to you.
You are forced to be by yourself mostly, so you experience forced privacy.
You are spiritually inclined, and have got used to being alone.
Other:
Decision making Your role in decision making To help us gather information on your experiences on decision making. (1) Your role in family decision making … *
You have always been included in family decision making.
You are still included in family decision making after a diagnosis of mental illness.
Since your mental health problems began, you are no longer included in family decision making.
You were never included in family decision making.
Though you are included in family decision making, you don't feel you are taken seriously.
Your family has always taken decisions in a democratic way involving everyone.
Your family has never taken decisions in a democratic way and all decisions are taken only by the same person(s).
Your family does not include you in decision making when you are in active treatment.
Your family waits for you to get better before taking important decisions.
You are allowed to take part in family decision making unless it specifically concerns your condition/treatment.
Other:
(2) About your role in decision making on matters that concern you specially mental health issues, you feel … * (Please choose the most important point according to you.)
It is very important to you that you are included in all discussions about decisions related to you.
Another person cannot take decisions about you.
You don't always have all the needed information for making a decision.
There are times when other people might need to take decisions for you, but when such time is over, you must be free to take decisions for yourself.
You may have a difficult time in making a decision, but all you expect then is support in making those decisions.
Other:
Healthcare Health and Wellbeing To help us understand your views and experiences regarding health, recovery and healing. (1) What is the meaning of healing according to you? (‘Healing’ = To find your own ways to keep well and be fit.)
Symptoms go away.
Medicines are no longer needed.
Your doctor says you are cured.
You have access to information on healing alternatives.
You begin to understand your problems better.
You are able to regain lost self-esteem and self-confidence.
You begin to feel you are learning new way of coping and managing.
You are better able to to manage your relationships with others.
You are better able to understand and deal with other people's responses to you.
Other people include you in decisions and discussions.
Other:
(2) What is the meaning of recovery according to you? (‘Recovery’ = The period during treatment of the illness.)
Symptoms go away.
Medicines are no longer needed.
Your doctor says you are cured.
You have a satisfactory daily routine.
You are able to acknowledge your problems and have reliable ways of dealing with them.
You recover your sense of your self and your role and identity.
Other people accept that though you have a mental health problem you are capable of finding recovery options that work for you.
You interact with people and they with you on things other than mental health.
You know what to do when you are having an 'episode'.
You can say what others can do when you are having an 'episode'.
Other:
(3) On matters of general, physical health and visits to doctors.
You visit doctors as often as required for physical ailments.
You always tell the doctor if you are on psychiatric medication.
You do not visit doctors for physical ailments.
You are always accompanied or 'taken along' by someone when you have to go see a doctor for a physical ailment.
Nobody cares about your physical ailments, they are all to busy focusing on your mental health problems.
Your doctor has told you that your physical ailments are all in the mind.
Other:
(4) On the diagnosis of mental illness. *
The diagnosis helped you to understand what was happening to you.
The diagnosis helped your family to understand what was happening to you.
The diagnosis helped your family and that helped you be safe at home.
You are not ‘mentally ill’ and so diagnosis is a false label applied on you.
Your problem is medical, and you were okay with the diagnosis.
The diagnosis made your life different from all others.
The diagnosis led to your exclusion from mainstream life.
Your problem is medical, but you were mis-diagnosed.
Other:
(5) What would a responsible and caring mental health professional do to help in healing and recovery? *
Talk to you and explain what they think in a way that you can understand and respond to.
Listen to you.
Listen to you regarding the medications and their side effects
Involve you in decisions about your treatment, healing and recovery.
Talk to you instead of talking only to your family or helper.
Discuss other options of therapy and solutions in your life.
Be friendly and easy in attitude.
Not threaten you.
Not force you into any treatment or situation you do not wish to be in.
Give you sufficient time to make sense of what you are going through and not rush into 'emergency treatments'.
Have different ways of communicating with you and understanding what you are saying.
Other:
(6) When you feel overwhelmed due to a mental health problem, what do you want other people around you to do? *
Leave you alone.
Allow you your privacy but not leave you alone.
Stay calm.
Ask you what you want them to do.
Ensure that your basic needs are met (such as food, personal care and grooming etc.).
Not try to immediately find a solution.
Not assume that you want to be hugged or touched.
Assist you to temporarily leave the room/situation and stay with you till you feel better.
Allow you to try recovery methods that have worked for you earlier.
Other:
(7) When you feel overwhelmed due to a mental health problem, who do you want to be with?
Any family member.
A particular family member.
Any friend.
A particular friend.
A mental health professional.
Any person who is calm and compassionate and does not panic.
Nobody.
Other:
(8) On matters of mental health consultations with mental health professionals. *
You visit a psychiatrist for mental health issues.
You visit a non-psychiatric mental health professional, such as a therapist, for mental health issues.
You visit an alternative practitioner of healing or spiritual practice for dealing with mental health issues.
Other:
(9) Your experiences during consultations with health professionals. *
You have experienced disrespect from a psychiatrist due to your experience of mental illness or psychosocial disability.
You have experienced disrespect from a non-psychiatric professional due to your experience of mental illness or psychosocial disability.
You have been forced to undergo treatment, hospitalisation, or institutionalisation for any mental illness.
You have experienced treatment for a mental illness where the illness, the treatment options and protocols were not explained to you.
You have been forced to undergo psychiatric treatment, psychiatric hospitalisation, or institutionalisation for any medical illness.
You have been forced to undergo treatment, hospitalisation, or institutionalisation for any social problems.
Other:
(10) Psychiatric medication and issues of inclusion *
Psychiatric medication and it's side-effects have made it difficult for you to participate on equal basis with others in various activities.
Your non-psychiatric doctors have ignored your problems with the side effects of psychiatric medication.
Your psychiatrist has ignored your problems with the side effects of psychiatric medication.
You would like the option of refusing medication.
You would like to work in collaboration with your doctor on medications.
You would like to know more about medications before taking them.
Other:
(11) Do you self identify as a ‘voice hearing person’? *
Yes
No
Social activities
Participation and inclusion in social activities.
To help us understand your participation and inclusion in social relationships and activities.
(1) On social relationships and activities *
You are regularly a part of informal family and social activities along with others (such as morning walks, shopping trips, recreational outings, celebrations and gatherings).
You are a part of formal family and social activities along with others (such as classes, job related, clubs, celebrations and gatherings.
You would like to be included in informal family and social activities along with others but you don't have the support you need.
You would like to be included in formal family and social activities along with others but you don't have the support you need.
You would like your family to understand that you need support to manage the public travel, or public spaces for participating in activities.
You go mainly to mental health groups and don't have other interactions.
You visit friends of your choice sometimes.
You visit friends and relatives approved by your family.
You are mostly at home.
You do not wish to be a part of informal activities.
You do not wish to be a part of formal activities.
Other:
(2) What support and attitudes could help you be a part of informal family, social and group activities? *
Accepting that you are more than a person with a mental health problem/psychosocial disability.
Wanting to include you and making the effort to support you.
Asking you if you would like to be included and how.
Including you anyway, without making you feel singled out or different.
Not comparing you to others, or talking about you as if you were not there.
Awareness and sensitisation of the travel and hospitality industry to accommodate special needs.
Be sensitive to your reactions to sensory (light, sound, other) stimulation and respect that.
Give you time to 'come back' into conversations or social contexts.
Be non-judgmental about your grooming and behaviour.
Allow you to take the sort of safe risks that actually may help you prevent another 'episode'.
Other:
(3) On mobility issues *
You are comfortable travelling and moving around in public spaces alone.
You feel you'd rather not travel or move around in public spaces.
Certain situations affect you badly, like crowds, closed spaces and noisy places, so you don't risk going out much.
You feel that you may get laughed at or bullied, so you prefer not to go out much
Other:
Education Experiences and thoughts related to education. To gather information on challenges to pursuing education. (1) On formal education
Your mental health problem / psychosocial disability disrupted your education before you could complete it.
If your mental health problem / psychosocial disability is disclosed to an educational institution there will be negative consequences.
Your chances of receiving higher education are low because of mental health problems/ psychosocial disability.
Other:
(2) What is your experience of student and staff responses to mental illness / psychosocial disability in a student?
They treat it as gossip and make up stories.
Some students are caring and try to help.
Some staff members are caring and try to help.
Nobody knows how to help or what to do.
People become wary of the student with the mental health problem.
The institution becomes wary and tries to remove the student from its rolls.
The institution tries to help the student through counselling and/or other means.
The institution has a peer support system in place.
Other:
Employment and livelihood Issues of workplace, livelihood options and personal finances. To collect information and gather suggestions on workplace policies and livelihood options. (1) Regarding jobs and livelihood *
You have faced an interruption or change in work due to your mental health problem / psychosocial disability.
You have made a disclosure about your experience with psychosocial disability or mental health problem to your employers / at the workplace.
Your employers have clear company policies regarding equal opportunities that mention persons with disabilities.
Your employers have clear company policies that specifically mention creating or providing equal opportunities for persons with mental illness / psychosocial disabilities.
Since you were diagnosed with psychosocial disability, you have only been employed in special places such as sheltered workshops or rehabilitation programs.
You have been a volunteer and not been paid for the work that you do.
You are a self advocate and you are not being paid for what you do.
You are employed but have not disclosed your condition to your employers.
Other:
(2) Inclusion at the workplace of persons with mental health problems/psychosocial disabilities requires… *
Awareness, training and sensitization.
Clear policies on the subject.
Anti-discrimination and anti-harassment policies at work.
An environment that is supportive of identified special needs.
Non discrimination in work, payments and incentives.
Empanelled counsellors.
Inclusion of mental illness related leave in sick leave policies.
Other:
(3) What does a supportive work environment mean to you? *
Flexible hours.
Exploring possible support based on need.
Non-violent and supportive communications.
Support from peers and colleagues.
Exploring alternative job responsibilities.
Other:
(4) Finances *
You are financially independent.
You depend for financial help on family and friends to some degree.
You are completely dependent on family/friends financially.
You have money but you don't manage it yourself, someone else manages it for you.
You have been allowed to open and operate your bank account independently.
Other:
Inclusion and Reasonable Accommodation Additional thoughts - Inclusion Some general thoughts about inclusion, reasonable accommodation, best practices and challenges. (1) On interactions with the police
You have not had any interactions with the police.
You have had bad interactions with police on account of your mental health problems.
If you ever have a problem you will not call the police in case they find out you have mental health problems and treat you badly.
Other:
(2) You think police can be supportive of inclusion by…
Being more informed and aware of mental health problems and psychosocial disability.
Understanding and practising equality and non-discrimination.
Actively intervening in cases of discrimination, bullying, abuse and harassment of persons with mental health problems/psychosocial disability.
By arbitrating with families not to resort to forced institutionalization.
By rescuing people who are forcibly institutionalized.
Other:
(3) If you are part of advocacy voices and platforms for persons with mental health problems/ psychosocial disability, please share your experiences. (4) According to you, what does reasonable accommodation mean? (5) Do you ask for reasonable accommodation or necessary support when you need it? *
You can ask for support easily.
You do not know when and how you can ask for support.
You can specify exactly what kind of support you need.
You worry that if you ask for support, it will lead to doubts about your health or your ability.
You ask only if there is a threat to your freedoms, safety or well being.
You never ask especially if there is a threat to your freedoms, safety or well being.
You don’t know that you need help, when you might need it the most.
(6) Give any example that you want to share, of a good practice on Inclusion. It could be a program, or any individual action taken by anybody you know. (if you have no such example in mind, please state so - and if you have a suggestion for a good practice, please share it here.)