Recommendations dated 06 October 2010 sent by committee member through speed post - all in harmony with UNCRPD - recommendations which make intangible rights - tangible for people with mental illness living in India - not included in the consensus paper -'substantive content of new law on disability rights'.
CHAPTER: ENTITLEMENTS
Right to entitlements
1. Medical Insurance for both Inpatient and Outpatient facilities: Government must ensure within a year of enactment of this legislation that people with disabilities have access to insurance to meet medical expenses, visits to doctor, prescription medications for chronic illnesses, hospitalization for disability related medical needs, travel expenses to hospital/clinic Insurance to cover visits to doctor, prescription medications for chronic illnesses, therapy, travel expenses to hospital/clinic, Assistive devices,
Any disability discriminated by the Insurance sector for refusal of medical insurance must be penalized with a fine of Rs. Five lakhs and community service for violating these rights.
2. Disability Entitlement: Government must ensure within a year of enactment of this legislation that people with disabilities are provided with not less than Rs.7000 a month. To be dispatched by Post/Money Order to their place of residence/work as desired
3. Additional Disability Entitlement for Women: Government must ensure within a year of enactment of this legislation that women with disabilities are provided additional entitlements not less than Rs.7000 a month. To be dispatched by Post/Money Order to their place of residence/work as desired
4. Disability Entitlement for Children: Government must ensure within a year of enactment of this legislation that children with disabilities are provided entitlements not less than Rs.7000 a month. To be dispatched by Post/Money Order to their place of residence/work as desired
5. Additional Disability pension for Elderly with disabilities: Government must ensure within a year of enactment of this legislation that Elderly with disabilities are provided entitlements not less than Rs.7000 a month. To be dispatched by Post/Money Order to their place of residence/work as desired
6. Right to a single window clearance for disbursement of family pension: Government must provide a single window clearance for disbursement of family pension. Example: parent to offspring with disabilities. To be dispatched by Post/Money Order to their place of residence/work as desired.
7. Support entitlement: Government must ensure within a year of enactment of this legislation that caregivers who give care and intensive support to person with disability within the family and therefore unable to go out and earn be provided with not less than Rs.5000 a month for augmenting the income of the family. To be dispatched by Money Order to their place of residence/work as desired. Government must acknowledge the care and support services of dedicated caregivers to person with disability within a family who fiercely protect their rights especially when it is unable to provide such services.
8. Stipend from fund for people with disabilities living below the poverty line: This stipend must become operational within two weeks after the demise of family member who provides financial support to the person with disability. This stipend is to cover basic expenses of food and self-care for person till the pension becomes operational. To be dispatched by Money Order to their place of residence/work as desired.
9. Single window provision of entitlement of Rashtriya Swasthya Bhima Yojana (RSBY) cards - which are existing smart cards in rural areas to include people with disabilities including MI living in rural areas below poverty line to access health care services
10. Single window provision for a birth certificate at place of residence of person/children with disability: Government must facilitate and provide birth certificate to children/person with disability at their place of residence. Most children in India are born at homes. When the family becomes aware that there is a disability in the child and visits the Primary Health Care/ Community Block Centre/ District Hospital the birth certificate is asked for -which most families do not possess. A birth certificate is often essential for provision of a disability certificate
Harmony with UNCRPD Preamble: d,i,j,q,v, Articles: 1,2,3,4,5,9,10,12,16,17,18,19,23,25,26,27,28,30
Right to Access Justice when there are barriers to entitlements
11. Authority (District Commissioner of disability) to ensure that entitlements reach people with disabilities by the first week of the month.
12. If a person with disability does not receive their entitlement within this period- person with disability to lodges complaint to – ‘District Commissioner’ (new authority to be created) through block community centre/post office.
13. Punitive action - personnel in charge of disbursement of entitlements to pay a fine as well as do community services in a rehabilitation centre for three months.
CHAPTER: ACCESS/REHABILITATION
All the recommendations given below must be in place within three years of enactment of this legislation
14. Access to a Disability Certificate : Government must facilitate and ensure that person with disability is provided a disability certificate to access entitlements, to access health care services, rehabilitation services, for assistive devices, for provision of intensive support, for employment, for travel by bus, rail and air etc.
15. Access to certification: Government must ensure that Primary Health Care centres, Community Block Centres, District Hospitals in each district have single window provision for disability certification for people with disabilities.
16. Access to Assessment of disability: Government must provide specialists in each area of disability to make periodic fortnightly visits to Primary Health Care centres, Community Block Centres and District Hospitals for people with disabilities for assessment of disability.
17. Access to latest science-based and evidence based tests for assessment of disability: Government must ensure that the latest science-based and evidence based tests are provided for assessment of different disabilities for people with disabilities in the Disability Camp, Primary Health Care centres, Community Block Centres and District Hospitals.
18. Access to latest working equipment and tools for assessment of disability: Government must ensure that the latest working equipment and tools for assessment of disability is available during assessment of disability for people with disabilities.
19.. Access to Certification within two weeks after the first visit by person with disability to Primary Health Care centre/Community Block Centre/District Hospital: Government must ensure that the disability certificate is provided to person with disability within two weeks after the first visit by person with disability to the Disability Camp/Primary Health Care Centre/Community Block Centre/District Hospital/City Hospital.
20. Access to receive a disability certificate by Indian postal services to place of residence of person with disability: Government must ensure that the disability certificate is delivered by Indian Postal Services to the place of residence of person with disability within two weeks after the first visit to the Disability Camp/Primary Health Care Centre /Community Block Centre/District Hospital/City Hospital.
21. Access a tracking system during provision of disability certificates for people with disabilities: Government must place a tracking system to monitor the procedure of provision of disability certificate for people with disabilities.
22. Access to justice when disability certificate is not provided within two weeks after the first visit by person with disability to Primary Health Care Centre/Community Block Centre/District Hospital: Government must place an Appropriate Authority in each district with judicial powers for taking immediate action when disability certificate is not delivered to person with disability to place of residence within two weeks after the first visit to the Disability Camp Primary Health Care Centre/Community Block Centre/District Hospital/Government Hospital and ensure within one week that disability certificate is delivered to the place of residence.
CHAPTER: SITUATIONS OF RISK AND HUMANATARIAN EMERGENCIES
23. Access to health care services during armed conflict, humanitarian emergencies and occurrence of natural disasters for people with disabilities.
24. Access to stable and safe housing during armed conflict, humanitarian emergencies and occurrence of natural disasters for people with disabilities.
25. Access to support services -during armed conflict, humanitarian emergencies and occurrence of natural disasters for people with disabilities.
26. Access to systems for tracking and monitoring people with disabilities who are affected during armed conflict, humanitarian emergencies and natural disasters to ensure provision for appropriate care and that help is provided until their recovery is complete.
CHAPTER: AUTHORITIES
27. District Commissioner of disability: To ensure that entitlements, disability certificate reach people with disabilities by the first week of the month.
28. Central Authority for stigma reporting: Government must ensure the placement of an authority for a stigma reporting cell for people with disabilities at the Central Level when media falsifies and ridicules people with disabilities and for reporting specific cases of stigma.
29. State Authority for stigma reporting: Government must ensure the placement of an authority for a stigma reporting cell for people with disabilities at the State Level for reporting specific cases of stigma.
CHAPTER: LEGAL CAPACITY
30. Right to special provisions in the law for people with disabilities who are unable to take care of themselves and who need intensive support.
31. Right to supportive mechanisms which are not commercial
32. Right to supportive mechanisms which are non-profit
33. Right to supportive mechanisms which are answerable to an ethics committee
CHAPTER: HEALTH
Right to Health
34. Government must place Health indicators and benchmarks for people with disabilities by which progress can be closely monitored.
Right to Health Care for people with disabilities living below the poverty line, people with disabilities who are economically under privileged, for people with disabilities living in rural areas:
35.Free diagnostic tests in private health facilities for people with disabilities living below the poverty line: Private health care facilities with labs must be encouraged by government to provide free diagnostic tests for people with disabilities living below the poverty line.
36. Concessional rates for diagnostic tests in private health care facilities for people with disabilities who are economically under privileged: Private health care facilities with labs must be encouraged by government to provide the above mentioned facilities by providing incentives -land at concessional rates, subsidize water and electricity charges,
37. Government must ensure one inpatient bed for person with disability at Primary Health Care Centre.
38. Government must ensure one inpatient bed for women with disability at Primary Health Care Centre.
39 Government must ensure emergency services for people living with disabilities in rural areas and for people with disabilities living below the poverty line.
Early identification and intervention to minimize and prevent further disabilities.
40. Government must ensure services for early identification and intervention to minimize and prevent further disabilities through trained Asha workers, Primary health care centres and Community block centres.
CHAPTER: REHABILITATION:
Right to Rehabilitation
41. Government must provide in each district family-based, community-based services offering treatment, care, rehabilitation and follow-up services for people with disabilities.
42. Government must encourage private health facilities to have aesthetically built rehabilitation centres for all disabilities by providing incentives like land at commercial rates, excise and custom rebate on equipment, subsidized water and electricity charges.
43. Government and private health facilities must have a specific number of IPD beds reserved for people with disabilities.
44. Government and private health facilities must have a specific number of IPD beds reserved for women with disabilities.
45. Government and private health facilities must have basic facilities in ambulances for people with disabilities.
46. Government and private health facilities must have care & management in the wards during the acute & early rehabilitative phase for people with disabilities.
CHAPTER: AWARENESS RAISING
Right to Awareness Raising:
47. Government must ensure to adopt, immediate, effective and appropriate measures on awareness pertaining to disability with definite process, procedures, implementation, impact and review akin to the HIV/AIDS and DOTS programme.
Awareness for different category of personnel
48. Government must ensure to adopt, immediate, effective and appropriate measures of awareness programmes pertaining to disability for people with disabilities,
49. Government must ensure to adopt, immediate, effective and appropriate measures of awareness programmes pertaining to disability for caregivers of people with disabilities.
50. Government must ensure to adopt, immediate, effective and appropriate measures of awareness programmes pertaining to disability for families of people with disabilities.
51. Government must ensure to adopt, immediate, effective and appropriate measures of awareness programmes pertaining to disability for healthcare providers.
52. Government must ensure to adopt, immediate, effective and appropriate measures of awareness programmes pertaining to disability for paramedics.
53. Government must ensure to adopt, immediate, effective and appropriate measures of awareness programmes pertaining to disability for support staff.
54. Government must ensure to adopt, immediate, effective and appropriate measures of awareness programmes pertaining to disability for policy makers.
55. Government must ensure to adopt, immediate, effective and appropriate measures of awareness programmes pertaining to disability for bureaucrats.
56. Government must ensure to adopt, immediate, effective and appropriate measures of awareness programmes pertaining to disability for print and electronic media.
57. Government must ensure to adopt, immediate, effective and appropriate measures of awareness programmes pertaining to disability for law enforcement personnel.
58. Government must ensure to adopt, immediate, effective and appropriate measures of awareness programmes pertaining to disability for legal professionals.
59. Government must ensure to adopt, immediate, effective and appropriate measures of awareness programmes pertaining to disability for judiciary.
60. Government must ensure to adopt, immediate, effective and appropriate measures of awareness programmes pertaining to disability for the public.
CHAPTER: DEFINITIONS
61. Disability Certificate: A certificate stating the percentage of disability after assessment of person with disability by competent medical authority who is a specialist in the area in disability in order to access to entitlements for fully and effectively participating in society on an equal basis with others.
62. Self-help group: A group consisting of individuals who are people with disabilities, caregivers from families who voluntarily give care to women/children/elderly people with disabilities who require intensive support. Members of self-help groups support people with disabilities in the group in all activities of daily living including self-care, washing clothes, cooking, shopping, respite care and provide emotional support to one another during times of crisis. Formation of Self-help groups must be encouraged in our country where there is no affordable paid care and no support systems for most people with disabilities.
63. Rehabilitation: A process providing medical, social, psychological, vocational, occupational, and recreational support to person with disability, in order to equally and fully participate in society on an equal basis with others.
64. RSBY (Rashtriya Swasthya Bhima Yojana) Card: A card issued by the Government of India to people living below the poverty line to access private and government health care facilities
65. Caregiver: An individual who is a family member or a relative, who resides with person with disability, voluntarily gives care and intensive support to a person with disability and protects their rights.
(In India in the absence of state health care, sparse healthcare, unaffordable rehabilitation facilities, unpaid family caregivers provide the bulk of care to people with mental illness. Caregivers play a crucial role in giving care, protecting/upholding rights, providing support to women/people with mental illness so as to fully participate in society on an equal basis with others)
(In India in the absence of state health care, sparse healthcare, unaffordable rehabilitation facilities, unpaid family caregivers provide the bulk of care to people with mental illness. Caregivers play a crucial role in giving care, protecting/upholding rights, providing support to women/people with mental illness so as to fully participate in society on an equal basis with others)
66. Professional Carer: An individual who may or not be a licensed professional, who resides with person with disability, takes financial compensation/payment to provide care and support to a person with disability.
67. Reasonable Accommodation: means necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms.
‘Rights can be enjoyed by adolescents/women/adults with mental illness in India - only if they are translated into tangible ones.’- a father of a young woman with mental illness in India
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