Empowering Independent Living Philosophy A Guide to the Independent Living Movement for Pakistani ILC (for Managers and Supporters

Introduction:

The United Nations signed a Convention on the Rights of Persons with Disabilities from the heads of member countries, including Pakistan. The purpose of the Convention is to promote, protect, and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all Persons with Disabilities and to promote respect for their inherent dignity.

Persons with disabilities include those who have long-term physical, mental, intellectual, or sensory impairments which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others.

Article 19 of the UNCRPD enshrines the right to live independently as part of the community and comprises three core elements: equal choice about where to live, access to support services, and equal participation in society.

Independent Living means?controlling and directing one's life and taking responsibility for one's actions. It means knowing what choices are available and selecting what is right for one. Independent Living means being as self-sufficient as possible.

This encompasses several aspects:

• Self-sufficiency:?Being able to take care of oneself in areas like cooking, cleaning, personal hygiene, and managing finances.
• Decision-making:?Having the autonomy to make choices about one's life, including housing, employment, and relationships.
• Daily tasks:?Managing daily routines like transportation, errands, and household chores.
• Social participation:?Engaging with the community and participating in activities of interest.

The Philosophy of Independent Living:

The IL philosophy challenges the traditional view of disability, which often emphasizes dependence and limitations. It argues that individuals with disabilities have the same right to self-determination, participation, and inclusion as anyone else. IL focuses on maximizing a person's abilities and providing the necessary tools and services to live independently. IL philosophy empowers economic persons with disabilities to pay for the services of ILC.

A Global Movement:

The IL movement has a rich history, originating in the United States during the 1960s. People with disabilities advocated for the right to live outside of institutions and participate actively in society. This movement gained momentum in Europe, Asia, and the Pacific, leading to the establishment of ILCs that provide a range of services, including:

• Independent living skills training (cooking, cleaning, personal care)
• Peer support groups
• Information and referral services
• Advocacy for disability rights and accessible housing
• Assistive technology training

The Independent Living (IL) Movement is a powerful story of empowerment and self-determination for people with disabilities. Its roots can be traced back to the 1960s in the United States, with a key figure being Ed Roberts.

Challenges and Resilience:

Developing countries in Asia grapple with numerous issues: natural disasters, inflation, unemployment, expanding slums due to rapid urbanization, and inadequate education, sanitation, and healthcare. While political stability and economic growth have been observed in recent years, economic slowdowns put people with disabilities in a precarious situation once again. It is difficult that governments in Asia can be sensitized on ILCs

A Brighter Future:

The Duskin Leadership Training program in Japan is a unique initiative designed to empower young people with disabilities from the Asia-Pacific region

Program Goals:

·?????? Equip participants with knowledge and skills related to disability welfare policies and services specifically in Japan.

·?????? Empower them to become leaders and advocates for improved support systems for people with disabilities in their home countries.

·?????? Foster a network of young disability rights leaders across the region.

Program Focus:

Understanding the Japanese model of disability support, which emphasizes independent living and community inclusion.

·?????? Learning best practices in areas like:

·?????? Independent living skills training

·?????? Peer support

·?????? Advocacy for disability rights

·?????? Accessible housing and transportation

Program Benefits:

Participants gain valuable knowledge and skills to create positive change in their communities.

·?????? They build connections with other young disability rights leaders in the region.

·?????? They gain exposure to successful disability support models and learn to adapt them to their own contexts.

Program Sponsor:

The Duskin Ainowa Foundation, established by the Duskin Company in cooperation with the Duskin Group of companies.

Program Implementation:

Implemented by the Japanese Society for Rehabilitation of Persons with Disabilities (JSRPD), a CBR-based organization.

Mostly, DUSKIN trainees who could speak Japanese very funded or implemented Independent Living Centers (except in Australia and New Zealand). They formed Asia Pacific Network of Independent Living (APNIL) comprising:

Australia, Bangladesh, Bhutan, Cambodia, China, Fiji, India, Indonesia, Japan, Malaysia, Mongolia, Nepal, New Zealand, Pakistan, Philippines, Singapore, South Korea, Sri Lanka, Thailand, Timor-Leste, Vietnam

Most countries in the Asia Pacific are facing challenges to sustain, and no one except Japan and Korea expanded ILCs at the country level. Here's a more nuanced perspective on Independent Living Centers (ILCs) in the Asia Pacific region:

Challenges:

Limited Resources: Many Asian and Pacific countries face resource constraints, making establishing and sustaining ILCs difficult. Funding, infrastructure, and trained personnel can be scarce.

Lack of Awareness: Disability rights and the concept of independent living might not be widely understood, reducing public and government support for ILCs.

Cultural Considerations: Cultural and religious attitudes towards disability vary across regions. In some cases, traditional family support systems overshadow the need for formal ILC services.

Looking Forward:

Collaboration: Collaboration between governments, NGOs, and international organizations is crucial for strengthening ILCs in the Asia Pacific.

Knowledge Sharing: Sharing successful models and best practices within the region can provide valuable insights for ILC development.

Networking: Networking among ILCs fosters knowledge sharing, resource exchange, and collaboration, amplifying their collective impact on government and society for people with disabilities.

Focus on Sustainability: Building capacity and exploring sustainable funding models are essential for ensuring the long-term viability of ILCs.

Independent Living in Pakistan:

Pakistan is witnessing a growing awareness of the IL philosophy. Organizations of Persons with Disabilities are playing a crucial role in raising awareness and advocating for the rights of people with disabilities. The concept of ILCs is relatively new in Pakistan, with organizations like the Pakistan Independent Living Centre (PILC) pioneering efforts to provide support and resources.

A model ILC should work on the following three conceptual themes;

Theme 1:?Eliminate Stigma and Discrimination:

Representation and empowerment of persons with disabilities All types and degrees of persons with disabilities should enjoy the life with full dignity and respect. For this state should implement the UNCRPD in full phase. Anti-Discrimination law should be developed. Independent Living Law with social security services, personal Assistant Services 24 hours a day, assistive devices and technologies, housing, and accommodation are key issues to be addressed.

Theme 2:?Routes to Economic Empowerment

Accessible transport and infrastructure Transportation and Infrastructure law should be reviewed and developed according to the spirit of UNCRPD. The law will enforce stakeholders to make accessible transportation and infrastructure. It will create many possibilities and opportunities to bring peers outside. It will help peers in economic empowerment.

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Theme:?Harnessing Technology and Innovation

New programs or services An ILC should establish an Assistive and Technology Center. The center should also repair and maintain assistive devices and produce wheelchairs and other necessary products.

Opening an Independent Living Center in Pakistan:

1. Currently, there is no formal regulatory framework for establishing and registering ILCs in Pakistan. However, some ILCs operate under the auspices of organizations of persons with disabilities. One DUSKIN trainee returned to the country and implemented a project from Japan on independent living. Huge funding with the support of Japan brought funds, but this organization failed to expand the ILC movement in Pakistan, except by giving shallow training to organizations of those persons with disabilities, who were near and dear to them. Resulted, the IL movement was limited to a single person in Pakistan.
2. Strengthen Organizations for Persons with Disabilities:?It is important to focus on building the capacity and resources of existing organizations for people with disabilities. This will create a strong foundation for the IL movement.
3. Network and Collaborate:?Explore partnerships with existing ILCs in Pakistan and internationally. Learn from their experiences and establish a network for knowledge sharing and support.
4. Advocate for Legislation:?Work with organizations of persons with disabilities and disability rights advocates to push for legislation that establishes a framework for ILCs in Pakistan. This could involve creating a dedicated council like the Pakistan Independent Living Council (PILC) to oversee the registration and operation of ILCs, i.e.

Pakistan Engineering Council (PEC)

Pakistan Medical and Dental Council (PMDC)

Pakistan Nursing Council (PNC)

Pakistan Bar Council (PBC)

Pharmacy Council of Pakistan (PCP)

Pakistan Veterinary Medical Council (PVMC)

The government of Pakistan usually initiates the process by drafting a bill to create the council. This bill outlines the council's purpose, structure, powers, and responsibilities. The bill is presented to the Parliament of Pakistan for debate and approval. Once passed, it becomes an Act, providing the legal basis for the council's existence. Otherwise, any professional council is illegal in Pakistan.

In view of the above, a strong network is required in Pakistan to promote and expand ILCs. Due to the vacuum, the Pakistan Independent Living Centre (PILC) Network came into existence with the support of HANDS Pakistan. These two organizations engaged in the MoU for such promotion.

Leveraging Zakat System:

Receiving money in kind without any business is called charity. If anyone or organization needs to avoid charity, it should be economically sustainable. Therefore, any organization registered in the UK is called a charity.

Feature

Donation

Charity/Grant

Social Security

Source

Individual

Donors

Government

Funding

Voluntary

Donations

Payroll taxes

Recipient

Anyone

Individual or organization

Eligible citizens

Purpose

Varied

Social cause

Financial assistance

Restriction on Use

May or may not have

May have specific purpose

Determined by program

Example

Giving money to a friend

Donating to a food bank

Receiving a retirement pension

Pakistan's unique Zakat and Usher system presents a potential source of funding for ILCs. Zakat is a religious obligation on Muslims to donate a specific portion of their wealth to charity. ILCs could be recognized as legitimate recipients of Zakat funds, allowing them to provide services to individuals in remote areas till they become economically sustainable.

Welfare System (Western Countries):

Zakat and Usher System

Government Programs:?Welfare systems are government-funded programs that provide financial assistance and social services to low-income citizens and those facing hardship.

Religious Obligation: Provide financial assistance and social services to low-income and disadvantaged citizens. This could be given by the Government, Individual or through Wakala

Funding:?Welfare program funding typically comes from a combination of taxes, payroll deductions, and government allocations.

Funding: Funding comes from rich people and calculated religious tax

Eligibility:?Eligibility for benefits is usually determined by factors such as income level, family composition, and disability status.

Eligibility: Eligibility for benefits is usually determined by factors like income level, family composition, and disability status, but only for Muslims.

Benefits:?The benefits offered can vary, but common examples include cash assistance, food stamps, housing assistance, and healthcare access.

Benefits: The types of benefits are cash assistance or through Wakala food stamps, housing assistance, and healthcare. Education services access

Goals:?The primary goals of welfare systems are to alleviate poverty, promote social mobility, and ensure a basic standard of living for all citizens.

Goals: The primary goal of welfare systems is to alleviate poverty, promote social mobility, and ensure a basic standard of living for Muslim citizens and through Wakala everyone can be benefitted. Personal Attendant Service is best example.

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Conclusion:

Building a robust IL movement in Pakistan requires a multi-pronged approach. By strengthening Organizations of persons with disabilities, fostering collaboration, advocating for legislation, and exploring innovative funding options like Zakat, We can create a network of ILCs to promote IL philosophy that empowers individuals with disabilities to live independently and contribute meaningfully to society.

Pakistan Independent Living Center (Network) is fulfilling all obligations necessary for strong networking of ILC, followed by legislation to convert the same into a Council. First steps have been taken, and now PILC is the only active network of organizations of persons with disabilities and ILCs in Pakistan.

PILC is working on the Pakistani style of independent living, relying on local resources like Zakat, local philanthropy, and the corporate sector. Community-based Rehabilitation (CBR) was a dominant strategy, and many countries adopted that as a National program.

Pakistan was the first country who raise its voice on Community Based Inclusive Development (CBID). Many countries, including World Health Organization representatives, opposed the term, but CBID was a success story of the theory of change. A Theory of Change explains how a program or initiative will create a desired future by outlining the steps and assumptions connecting activities to long-term outcomes. Now, some selfish people oppose the theory of change in the IL movement of Pakistan and want to play their dominant role, which is harmful to the IL movement in Pakistan