Question

1. How do we make sure that programs and services for people with disabilities are truly “by and for” people with disabilities?

2. How do we make sure that organizations claiming to speak for people with disabilities are truly effective? (Ex: Autism Speaks/NAMI, vs Autism Self Advocacy Network)

3. one specific population with a disability in one specific country.

Answer 1

• The first and foremost step to make sure that programs and services for people with disabilities are truly “by and for” people with disabilities is to get a survey conducted for the disabled. Based on this a statistical analysis should be done. Questionnaires should be given to each and every disabled person across a particular area. These questionnaires should include questions about the programs for disabled they are part of and how far those programs are useful for them. Questionnaires should also include the services they receive from various organizations. Another significant matter to be dealt with is to check how many of them are at the receiving end of reservations in public places or jobs that the country offers to these less fortunate ones. It is also a matter of concern that the jobs related to aids or services to the disabled are being done by those without disabilities. To overcome this concern and to make sure the active participation of the disabled in all programs and services for them, all the related jobs should be reserved for them. So that they will part of everything meant for them right from the decision-making stage to the deliverables. Thus the programs and welfare services for the disabled can ensure their active participation and ensure they receive all that is meant for them to overcome their disability. Proper legislation should also be made to ensure this.
• To ensure that organizations claiming to speak for people with disabilities are truly effective, regular audits should be conducted to assess their performance, regarding the amount/aid they receive and the amount they spend on various activities for the disabled. These activities should include research, awareness and outreach activities for the families in coping with the disabilities of a family member, public awareness campaigns, empowerment and rehabilitation of the disabled, and other services like monetary or health assistance. The enthusiasm of these organizations can be assessed by the service they do and the number of beneficiaries and their attitude.
• One population with one disability in one specific country: Oman is taken as an example here where the people with speech disability is 9.37% of the total disabled. Congenital speech disability is the prominent type in this case. This is caused due to the high percentage of marriages between first cousins, which is part of their culture. Various measures are now implemented to avoid this and to take care of the people with this illness.