Digital solution ensuring Quality care at Home to PWDs

Problem: In Sind (Pakistan), Persons with disabilities (PWDs) are the most marginalized and the most vulnerable communities. The majority of PWDs are from financially struggling and poverty-stricken families. The living standards of PWDs in rural and urban slums of Sind are even unimaginable. There are various issues. The foremost issue is the disappointment factor that bothers the majority of the parents of PWDs. Parents/ guardians strongly feel that their future is bleak. Therefore, they become ignorant of the future of PWDs. As a result, PWDs are left with no other option but to lead their lives in home confinement. Their parents never realize the importance of a Special National Identity Card and Disability Certificate. These documents are rarely available and PWDs fail to avail the facilities. For this reason, they are never visible in the national database. 

PWDs also lack proper care and disability management at home. Their parents are ignorant of appropriate personal care including hygiene and handling with care. There is evidence of bone fractures among PWDs as a result of mishandling by caregivers. The bedsores are threatening many PWDs. In short, a greater proportion of fifteen percent of PWDs is still behind doors, spending their life in sheer silence. The majorities among them are opportunity youth and the prime time of their life spoiled home-confinement. 

Solution: Our solution is diversified as it is multidirectional. We have designed five stages to explain the project in a simple manner. 

Stage 1: We will use ‘Google Forms’, to collect data on PWDs. The link to Google Form is available on the Home page of DWA’s website (www.dwa-pk.org). Data of PWDs will be collected from all over Sind. DWA would share this data with DEPD, and government of Sind, and the Election Commission of Pakistan. DWA would soon replace the Google Form option with Database, which is now under construction. 

Stage 2: This link will be shared with the public from the platform of the WOW Web channel of DWA. 

Stage 3: DWA will advertise for training hundred of more than a hundred personal care attendants. As the project will be delivered in ten districts of Sind, DWA would select ten persons including five men and five men from each district. In this manner, fifty males and fifty females would get personal care attendant training. 

The trainees will be given a stipend and they will be professionally trained as ‘Personal care Attendants’. DWA would seek the services of personal care specialists to conduct this training. Healthcare specialists will also conduct some components of the training to avoid any mishaps or mishandling. Healthcare specialists will guide the personal care attendants’ trainees to follow all the precautionary measures to avoid any harm to PWDs. 

DWA would also employ the services of five healthcare specialists from each of the ten districts. In this manner, fifty health care specialists will join this project.  

Stage 4: Team of specialists at DWA would assess the Google Forms. They will identify the immediate needs of PWDs. They will contact the parents and guardians of PWDs for further assistance. Parents/guardians and PWDs will receive assistance or quality care on the basis of their needs Assessment. Specialists may recommend one or more services to the parents/guardians or PWDs. 

· Disability Diagnosis with reference to a specialist

· Assistive Device

· Personal Care attendant

· Online tutorial support to acquire distance learning qualifications. 

Stage 5:  There will be a pairing between a healthcare specialist and a personal care attendant. They will visit the house of PWDs. They will provide training to parents/guardians to ensure quality care for their family members with disabilities. The majority of the families of PWDs cannot afford the services of a personal care attendant on daily basis. They are ignorant of proper care. They get training for maintaining hygiene and they will learn quality care in order to avoid bedsores. 

One of the most fundamental objectives of this solution is to create a more effective and more meaningful database of PWDs at the Provincial level. At present, the project is functional in six slums of Karachi. Google Forms were never used before. DWA has been serving a limited number of PWDs in its limited scope. This solution is promising for the provision of quality home care services to PWDs with special consideration for home-confined PWDs. It will also contribute to forming a provincial Database of PWDs. 

Transforming Lives

Our solution is promising for transforming the lives of PWDs.  PWDs would be identified in great number. The data would be helpful for taking initiatives for inclusion and mainstreaming of PWDs in an accessible society. More PWD will realize their rights and they will be mobilized to play their active role in the society. Disability movement would be strengthened as more PWDs would join the movement and strive for winning their rights.

In Sind, bylaws of disability Act, 2018 are also approved. The only need is to make united efforts for implementation of bylaws based on ‘Sind Disability Act, 2018’.

Our solution will serve in multiple directions. It will be beneficial for PWDs in many aspects like they will be mobilized. They will receive quality care at home. They will be provided with personal care attendants and assistive devices as per their needs. They will get awareness of their legal rights. They will participate in academic or professional training. Their socio-economic life will be improved as they will participate in entrepreneurship or skill development program. With persistence, they will soon be included in mainstream society.

Impacts of Our solutions

• Our solution will contribute to collecting more effective and meaningful data on PWDs for the provincial database of DEPD, the government of Sind. 
• Many home-confined PWDs will get the chance to be mobilized after the submission of Google Form/Database. 
• A hundred or more hundred people ( 50 males and 50 females) will get personal care attendants training and they will be later employed through this project. 
• Fifty or more than fifty healthcare specialists will get employment. They will also contribute to serving humanity. 
• Parents /guardians will receive training, guidance, and recommendations from Healthcare specialists and personal care attendants at their homes. They will later independently provide quality care to their family member with disabilities.  
• PWDs will receive quality care at home from their parents/guardians.  
• The cases of bedsores among bed-ridden PWDs will be reduced. It will also reduce the death rate due to bedsores.   
• The project would not only be sustainable but it would be further extendable to other districts of Sind as well. 

Scope of DWA 

Ø Legislative Initiatives

Ø Mobilization of Home-Confined PWDs

Ø Pioneer Independent Living Center in Sind

Ø Physiotherapy Services for users/ members 

Ø Promotion of Special Sports

Ø Network member

Ø Healthcare Facilities

Ø Ongoing Projects of Disabled Welfare Association

Legislative Initiatives with the Government of Sind

 DWA has been striving to secure the legal rights of Persons with Disabilities (PWDs) in Sind. It has been a member of the Advisory council of ‘The Department For Empowerment of Persons with Disabilities, the government of Sind. 

Approval of Sind Empowerment of Persons with Disability Act, 2018: Mr. Jawaid Rais, founder of DWA visited America in 2017, through the MIUSA Exchange program. On his return, he was determined to introduce the replica of ‘The American Disability Act (ADA)’ and UNCRPD in Sind (Pakistan). Leading a history-making struggle from the platform of a provincial network, DWA supervised the preparation of the final draft of ‘The Sind Disability Act, 2018’. When the final draft of ‘The Sind Disability Act, 2018’ was ready, DWA presented this draft to a regional minister in a ceremony. The minister submitted the draft to Sind Assembly for approval. The draft was first approved by Sind Assembly and later approved by the Governor of Sind in 2018. This Act is known as ‘The Sind Empowerment of Persons with Disabilities Act 2018, Government of Sind.  

Formulation and Approval of Rules based on Sind Disability Act, 2021: DWA contributed to the frontline for the formulation of bylaws/rules based on ‘The Sind Disability Act, 2018’. DWA strove for the approval of these rules from the Sind Assembly. These laws were approved in 2021. Sind Government added these rules in the Gazette book of the government of Sind after getting approval from the Governor of Sind. 

Establishment of Special Ministry in Sind for PWDs, 2018: Having a firm belief in the statement ‘Nothing about us, without us, DWA endeavored fruitfully in establishing a Special Ministry ‘Department for the Empowerment of Persons with Disabilities (DEPD)’, which has been managed by PWDs.  

Establishment of Special Court to provide free legal assistance to PWDs: Realizing the denial of persons with disabilities, DWA took another symbolic initiative for providing free legal assistance to Persons with Disabilities. The government of Sind has established a special court for PWDs on the recommendation of DWA and other like-minded DPOs. 

Increment in the Job quota from 2% to 5% in all public and private originations: Playing a pivotal role in resolving the unemployment issue of PWD, DWA has chiefly contributed not only to the increment in the allocated seats for PWDs from 2% to 5% in all the public and private organizations but also for its implementation. 

Allocation of 1% reserved seats in the local government in elections: Availing opportunity at a ceremony at CM house on the occasion of International Day of Persons with Disabilities (IDPD) 2021, DWA submitted the recommendation to allocate reserved seats for PWDs in the local government. Sind Government has given its approval. 

Mobilization of Home-Confined PWDs

Since its inception, DWA has been conducting data collection surveys to identify PWDs in the Slums of Karachi. DWA especially supports home confined PWDs to mobilize them to be effective members of society. The steps involved in the mobilization of PWDs are listed here. 

· Consultancy Services: A specialist of DWA does the consultancy of PWDs to identify the immediate needs of PWDs. Here the financial status of the family and severity level of the disability is assessed. Sometimes there is no evidence of a proper diagnosis of disability. The specialist also identifies whether the disability diagnosis is authentic or not in his/her recommendation. 

· Disability Diagnosis: If required, DWA’s specialist refers PWDs to a medical specialist. DWA has connections with some hospitals and healthcare specialists. who offer sponsored or free services for the proposed diagnosis to needy or deserving PWDs. 

Pioneer Independent Living Center in Sind

Mr. Jawaid Rais, the founder of DWA, visited Japan in 2009. He visited ‘Independent Living Centers during his stay. After returning to Pakistan, he transformed DWA into an ‘IL center’ in 2014. Its name was ‘Karachi Independent Living Center (KILC)’. In 2016, the center has been transformed into a network, ‘Pakistan Independent Living Center’s Network (PILC Network). PILC aims to establish at least one IL center in every district of Sind. At present, four IL centers are fully functional. These IL centers are located in Karachi, Manghopir (Slum of Karachi), Hyderabad, and Multan. 

Key Services of PILC Network

·        Personal Care Attendant Services: DWA has a team of trained male and female personal care attendants. DWA offers this training to its staff frequently. There are three phases of personal care attendant service. 

o In the first phase, male and female personal care attendants are available in the center. Whenever a PWD visits DWA, he/she is offered personal care attendant service during his stay in the center.

o In the second phase, some personal care attendants visit the homes of PWDs and attend to them in the comfort zone of their homes. 

o In the third and the most sustainable phase, our male or female personal care attendant visits the home of PWDs with a ‘health care specialist. Our male or female personal care attendant trains the parent, caregiver, or guardian under the supervision of a ‘healthcare specialist’ to provide proper care to the bed-ridden or home-confined PWD. They especially focus on hygiene, diet intake, proper handling while moving/ shifting/ bathing, etc. They also explain and practically teach all the precautionary measures to avoid bedsores. Bedsores are threatening and these are the major cause of death among PWDs in Pakistan.   

· Assistive Devices: DWA gives relevant Assistive Devices to PWDs free of cost if the PWD is belonging to a financially struggling family

· Peer Counseling, IL, Motivation, and Leadership Training Sessions: DWA mobilizes its new members/users by conducting peer counseling sessions, motivational sessions, IL training, and Leadership training. After this training. PWDS are mobilized with disability acceptance. They started participating in social life and other activities. 

· Lunch and Transport Facilities: Around sixty PWDs (the majority among them are youth) visit PILC Network every day in Karachi. They are provided free lunch and Transport facilities. 

Physiotherapy Services for users/ members

DWA has established a fully equipped small unit of physiotherapy services. The users and members of the PILC Network will receive free physiotherapy services on the recommendation of healthcare specialists.

DWA has been a project-oriented organization. It believes in the dignity of PWDs and it has never been a charity organization. As mentioned earlier, the scope of our project is diversified. We have been delivering all the aforementioned services to PWDs for more than ten years. We are in the midway of our project. We have been striving hard to approach PWDs in rural and urban Slums of Sind and for this project we have been targeting ten districts of Sind. This project is sustainable and íf we won, it will get prestige and it will add value to our selfless services for the community of PWDs. We would be able to approach more PWDs in least time. Solve will give a new ray of hope and a grand opportunity to a countless number of home-confined PWDs, who will be mobilized after receiving quality care, support or other services. Solve will enable us to cover five more districts by offering services to PWDs. Besides, the provincial database of PWDs will be more effective and meaningful for all the future initiatives that would be taken in the great favor of PWDs.

The following factors make this project innovative.

• The simplicity of using Google Forms/Database
• Formation of Provincial Database of PWDs of Sind
• Collection of more meaningful and effective Data of PWDs in the most affordable and accessible manner.
• Google Forms are available on the homepage of DWA’s website. The website is accessible through PC, tablet, or cell phone
• Home-confined PWDs will get quality care at home.
• Parents /guardians, who can never afford the services of Personal care attendants, will get training in quality care. 

From 2016 to 2021, DWA has extended its scope from one district to six Slums of Karachi. During the next five years, DWA has plans to extend the scope of its healthcare service ensuring quality care at home in districts of Sind. 

More PWDs would be included in the provincial Database with the passage of time. More districts will be covered and more PWD would be mobilized and their socio-economic status will be improved. The quality of healthcare will be improved and the life expectancy rate of PWDs will be improved. DWA would contribute to the third goal of global sustainable development.

 Stage 1

Activity 1

Data Collections via Google form

Output

PWD would respond and fill out Google forms

Short term Outcomes

DWA will collect Data from PWDs

Medium-Term Outcomes

PWDs will get support and assistance on

the basis of their immediate needs

Long term Outcomes

The Provincial Database of DEPD will be

formed

Stage 2

Activity 1

WOW channel will share the URL links and project information with the masses

Output

Home-confined PWDs would get a ray of home and they would respond to Google form

Short term Outcomes

PWDs would get awareness through the WOW channel

Medium-Term Outcomes

PWDs would approach other like-minded DPOs in their region or they may visit DWA.

Long term Outcomes

A great number of PWDs would get the chance to be mobilized and receive quality care at home.

Stage 3

Activity 1

DWA will offer personal care attendants training to fifty male and fifty females trainees

Output

100 persons will get employment

Short term Outcomes

A hundred families of personal care attendants will be financially stabilized.

Medium-Term Outcomes

New job opportunities would be created at the provincial level

Long term Outcomes

A new profession of ‘personal care attendant Service’ would be introduced and many would get employed on a long term basis.

 A great number of PWDS would get quality care at home.

Activity 2

DWA would seek the services of fifty healthcare specialists.

Output

Fifty healthcare specialists would be hired.

Short term Outcomes

Fifty families of healthcare specialists will be financially stabilized.

Medium-Term Outcomes

New job opportunities would be created at the provincial level

Long term Outcomes

A new scope of healthcare Specialists’ services would be introduced on long-term basis. A great number of PWDS would get quality care at home.

Stage 4

Activity 1

DWA would offer needs-based services to PWDs.

Output

PWDs would get assistance. They would accept disability and get mobilized.

Short term Outcomes

PWDs would involve in academic, professional, or sporting activities as per their interest. They will start leading a quality life.

Medium-Term Outcomes

PWDs will get the awareness of their rights. They will avail facilities and they will strive to play an active role in academic, social, and professional life.

Long term Outcomes

A great number of opportunity youths would become a part of mainstream society. Bylaws of Sind Disability Act would be implemented in a more accessible society

Stage 4

Activity 1

DWA would offer training to parents/guardians of PWDs, who cannot afford the services of personal care attendants on long term

Output

PWDs will get quality care at home.

Parents/guardians will get training to ensure quality care for their family members with disabilities.

Short term Outcomes

Parents will get the awareness of hygiene, diet intake, precautions to avoid bed sores,   and careful handling while shifting PWDs.

Medium-Term Outcomes

PWDs will lead a more comfortable life with proper and quality care at home. 

Long term Outcomes

The death rate among PWDs will be reduced.

The life expectancy of home confined PWDs will be improved.

Our community of persons with disabilities is vulnerable and marginalized. The literacy rate of 15% of the population of PWDs across Pakistan is comparatively quite low. They cannot easily understand technology tools or devices if it not designed simply. There will be another issue with access to that technology.

For this reason, DWA has been using its consultancy form, which is easily interpretable by all. The database would be simple, affordable, and accessible for all at it can be accessed through a cell phone, tablet, PC, or any other such device.

The core solution is the identification of PWDs who are still leading miserable lives in home confinement. They are never visible in the statistical data of the government as they don’t possess any support documents like CNICs or Disability Certificates. Their families are ignorant and they are not receiving quality care.

Once the PWDs would be identified in the database, it would be easy for government bodies or any other DPO/NGO to provide them support considering their immediate needs. Therefore the scope of DWA’s project is multidirectional but the core solution is to retrieve more meaningful data on PWDs.

DWA believes that only the identification of PWDs for making a provincial database would serve no good purpose in the lives of PWDs. DWAs are determined to ensure the quality of PWDs across Sind. Therefore DWA would serve the cause of PWDs until and unless they become active members of the society with recognition of their legal rights in an inclusive and accessible society.

PWDs are belonging to any gender, cast,e or religion.DWA is symbolic of practicing harmony among all ethnic groups, linguistic groups, or religious groups. Our staff also shows the similar diversity.

Our business model is service-oriented. 

We generate income through

Access Audit

Awareness Sessions

Mobility Workshop

Mini Garment Factory 

and through ongoing projects

We work with partner organization like HANDS, Pakistan.