Dear All
Happy New Year 20222 to all and and hoping for having healthy environment with normalcy.
Continued my interest of publication and during the last Quarter of 2021 2022, published a paper in the Journal of Mahila Pratishtha and a brief details of teh same were presented below as:
ABSTRACT
Limited or non participation of Parents of
PWDs in the processes of training and rehabilitation will limit their opportunities
of working for their empowerment leading for independent living in an inclusive
and accessible community and to get a better solution for their concern of “what
will happen to the child after us?”. Disability
is unexpected as it affects the growth and development of Family, Community and
Nation both socially and economically. Having a child with special needs in any
family needs special services, supports, and environment as they are unique in
their own way. Presence of such child in any family affects its dynamics with challenges
and vulnerabilities both social and economical. Government came out with
several Acts and Policies to support the persons with disabilities with
matching services, supports, schemes, benefits, training, rehabilitation, education,
employment, livelihoods, and others so that they can be empowered for better
living in an accessible and inclusive environment and community with equality,
dignity and respect as a right. At the stage of its implementation, several stakeholders
covering: Parents, Siblings, Grandparents, Community Members, Health Workers, Paramedical
Professionals, Disability Professionals, Service Providers, Local Establishments,
National Institutions, Donors, People’s Representatives, and others do play their
own role in the whole of process of empowering PWDs with matching strategies and
interventions. Among the Stakeholders, Parents of PWDs can play a key role as
PWDs will spend majority of their time and thus have better scope for learning
and sharing on life cycle basis which finally will lead for getting a better solution
for their concern that “what will happen to the child after us?”. Parents particularly from rural areas do have
limited scope to participate in the processes of training and rehabilitation of
their child at Centers managed by Government or NGOs. The present pandemic (Covid
19) has changed the whole environment of training and rehabilitation of PWDs puts
more pressure on parents particularly mothers. The shift towards Community
Based Rehabilitation will have several advantages with better scope to work on ownership
basis.
Key Words: Disability, Training, Rehabilitation, Empowerment, Independent Living, Community, Inclusion, Accessibility, Prevention, Sustainability, Quality of Life.
Statement of the Problem
Non or limited participation of Parents of
PWDs in the processes of training and rehabilitation of their ward will limit
their opportunities of working for their empowerment leading for independent
living in an inclusive and accessible community and to get a better solution
for their concern of ”what will happen to the child after us?”.
Introduction & Background
Disability is unexpected as it affects the growth and development of Family, Community and Nation both socially and economically. Having a child with disability or special needs (CWSNs) in any family needs special services, supports, and environment as they are unique in their own way. Presence of such child in any family affects it dynamics with challenges and vulnerabilities both social and economical. Government came out with several Acts and Policies to support the persons with disabilities (PWDs) with matching services, supports, schemes, benefits, training, rehabilitation, education, employment, livelihoods, and others so that they can be empowered for better living in an accessible and inclusive environment / community with equality, dignity and respect as a right. At the stage of its implementation, several stakeholders covering: Parents, Siblings, Grandparents, Community Members, Health Workers, Paramedical Professionals, Disability Professionals, Service Providers, Local Establishments, National Institutions, Donors, People’s Representatives, and others do play their own role in the whole of process of empowering PWDs with matching strategies and interventions. The Departments / Institutions working under the Government (both Central and State Governments) do follow the specific service delivery systems or channels (SDSs or SDCs) which are mostly dominated with top down approaches (TDAs) having limited scope to reach the targeted groups particularly living in rural areas. To overcome such limitations, community based initiatives which works mostly with bottom up approaches (BUAs) have been preferred as they do have several advantages to reach and work for the empowerment of the targeted groups. Among the Stakeholders, Parents of PWDs who are the first stakeholder can play a key role as PWDs will spend majority of their time (except the Orphans) and thus have better scope for learning and sharing on life cycle basis which finally will lead for getting a better solution for their concern that “what will happen tot eh child after us?”. Parents particularly mothers from rural areas do have limited scope to participate in the processes of training and rehabilitation of their ward at Centers / Institutions (which are away from the home & community) managed by Government or Non Governmental Organizations (NGOs). The present pandemic (Covid 19) has changed the whole environment of training and rehabilitation of PWDs and put more pressure on parents.
Role of Parents: Once the Parents of PWDs are empowered, they can play various roles at various levels and some of them were presented below as:
ü Individual
Level: On individual level, Parents can work and play various roles covering: Awareness
cum Advocacy, Mobilizer, Facilitator, Referral Services, Self Employment, Donor,
Mentor, Caregiver, Trainer, Accessibility, and Prevention,
ü Service
Provider: As a Service Provider, Parents can work for developing: Non Governmental
Organization (NGO) legally, and CBR Centre to work from
early identification to empowerment, facilitation for Schemes and Benefits, Legal
Guardianship, Employment, Livelihoods, Mainstreaming, Social Security, Barrier
Free Environment (BFE), Prevention of the causes of Disabilities (Disability
Free Society – DFS), Life Care Facilities and other matching services and suppose
on the model of Empowerment.
ü SHGs:
Parents
can form Self Help Groups (SHGs) with legal base and can work for creating Awareness
cum Advocacy, Mobilizer, Facilitator, Production cum Marketing of Products, Networking
and Connectivity, Group Employment / Livelihoods, Sheltered or Protected Workshop,
Life Care Facilities (LSF) and other matching services and supports with the main
focus of working for the Economic Empowerment
of PWDs as well as their Parents so that all together can enhance their
strengths to overcome the limitations of disabilities and to be part of accessible
and inclusive community as part of development.
ü Professional:
Some
of the Parents can become
Special Educators by doing the Disability Courses
recognized by Rehabilitation Council of India (RCI) either on regular or
distance mode. With that, they can work as an Employee, Self Employment, Facilitator,
Freelancer, Advocacy, Development of Teaching cum Learning Materials (TLMs), Support
Devices, Aids & Appliances, Collaborate for the development of Disability
Free Society (DFS), and Barrier Free Environment (BFE).
ü Employer:
Some
of the parents depending upon their economic status and living environment (rural
or urban) can develop business (micro to macro level) which includes existing Family
Business, Local Establishments, Sheltered or Protected Employment and other
modes on inclusive or exclusive or both to cater the needs of PWDs as well as their
parents including referral services for Health, Education, Accessibility, and Life
Care Facilities.
There exists some overlap in the roles of Parents at various levels, but broadly, empowerment of parents will work for the empowerment of their Children with Disabilities (CWSNs / PWDs) and further to support for the prevention of the causes of disabilities and thus strengthening Community and Nation.
Advantages: The empowerment of Parents (mostly along with their Children with Disabilities (CWSN / PWD) particularly with community based initiatives (CBR) do have several advantages and some of them include:
ü Better Acceptance with reduced
Stigma with Positive Attitude.
ü Working for the Training cum Rehabilitation
of PWDs as an Empowerment within the Family and Community Environment.
ü Working in the same environment
of PWDs and Parents will be a strength with people around them.
ü There will be better scope for
Early Identification particularly during the early age of 0 – 3 years and Early
Interventions with better scope for school preparedness.
ü It supports for effective and
efficient participation of Parents, Siblings and other Family Members both at
Home and Community.
ü Better Scope for the utilization
of local resources to the maximum extent possible.
ü As the use of transportation
is nil or minimum, there will be limited or less issues with transportation to
avoid the issues of access and barriers.
ü Better Scope to get connected
with PHC, Anganwadi Centres (under ICDS), Schools and other Community Utilities
and sharing of Resources.
ü As Parents are working within
the Family and Community Environment, the CBR Strategy supports family both
socially and economically.
ü Wider scope for the continuation
of livelihood activities like: Self Employment, Group Employment (by forming
into Self Help Groups – SHGs), Microentreprenuership and other forms of Income Generation
Programmes (IGPs).
ü The whole processes of empowerment
of Parents and PWDs will work more of independent with ownership where other stakeholders
will work as facilitators.
ü The services and supports of training cum rehabilitation can be made more available, accessible, and affordable (3As) as it works as part of the community development with scope for continuity.
Local Manpower covering: Parents, Siblings, Elders (including retired people), Community Workers, can be effectively utilized with better flexibility both in time and duration.
Initiatives
The Author is
well connected with Community Development particularly Disability
Rehabilitation with inclusive strategies and contributed significantly for the empowerment
of Parents as well as PWDs and some of the key initiatives (both directly and through
Institutes / NGOs) include:
Ø Awareness cum Advocacy
for PWDs, Parents, and other Stakeholders at Community on Acts and Policies, Schemes
and Benefits, Early Identification, Training and Rehabilitation, Education both
Normal and Special, Employment / Livelihoods, Accessible Environments, Prevention
of the Causes of Disabilities, and other aspects of Disability and Community
Development.
Ø Training to the PWDs
and their Parents (at Home, Centre, & Community) for minimizing the limitations
of disabilities with better scope for matching services and supports with better
availability, accessibility and affordability.
Ø Facilitation for
Schemes and Benefits with improved digital technologies for registration, application,
utilization, monitoring and evaluation.
Ø Guidance cum facilitation
for the Parents of PWDs to improve their qualification both in regular as well
as in special education (courses approved by RCI) so that Parents can transform
themselves as a Care Giver, Trained Teacher, Qualified Teacher, Mentor, Facilitator,
Service Provider (Sheltered or Protected Workshops), Employer, and other matching
roles connected with Disability Sector.
Ø Development of
Human Resources at all levels with collaboration for suitable employment or livelihoods.
Ø Organization of
Training, Workshops, and Seminars (both on regular & virtual modes) both on
exclusive and inclusive forums with better visibility on the needs and opportunities
for PWDs as well as to their Parents.
Ø Facilitation for
developing Livelihoods (self employment, group employment, or microentrepreneurship)
as part of income generation and further economic empowerment.
Ø Publication of
developed strategies, interventions and models of rehabilitation in both exclusive
and inclusive Journals / Books.
Ø Use of technologies
(particularly in view of present pandemic emerged due to Covid 19) moving towards
digital environment for better reach, connectivity, relationship, learning,
sharing, reporting, documentation, and presentation.
Ø Consultations
and initiatives to provide better solution to the concern of every parent of PWD
that “what will happen to the child after us?”.
The outputs,
outcomes and impact resulted due to the initiatives took up are significant and
connected PWDs and their Parents with other Stakeholders for better living in
an inclusive and accessible community / environment with better sustainability
and improved quality of life. More and more work need to be done as disability is
dynamic and well connected with poverty, and development.
.
Conclusions
The study made has
gained priority while working for the empowerment of Persons with Disabilities
and some of the conclusions emerged include:
ü Non or limited participation of Parents of
PWDs in the processes of training and rehabilitation of their ward will limit
their opportunities of working for their empowerment leading for independent
living in an inclusive and accessible community and to get a better solution
for their concern of ”what will happen to the child after us?”.
ü Disability is unexpected as it affects the growth
and development of Family, Community and Nation both socially and economically.
ü Presence of such a child in any family
affects its dynamics with challenges and vulnerabilities both socially and
economically.
ü Government cameup with several Acts and
Policies to support the persons with disabilities with matching services,
supports, schemes, benefits, training, rehabilitation, education, employment,
livelihoods, and others so that they can be empowered for better living in an
accessible and inclusive environment / community with equality, dignity and respect
as a right.
ü At the stage of its implementation, several
stakeholders covering: Parents, Siblings, Grandparents, Community Members,
Health Workers, Paramedical Professionals, Disability Professionals, Service
Providers, Local Establishments, National Institutions, Donors, People’s
Representatives, and others do play their own role in the whole of processes of
empowering PWDs with matching strategies and interventions.
ü The Departments / Institutions working under
the Government (both Central and State Governments) do follow the specific
service delivery systems or channels which are mostly dominated with top down
approaches having limited scope to reach the targeted groups particularly
living in rural areas.
ü To overcome such limitations, community based
initiatives which works mostly with bottom up approaches have been preferred as
they do have several advantages.
ü Among the Stakeholders, Parents of PWDs who
are the first stakeholder can play a key role as PWDs will spend majority of
their time (except the Orphans) and thus have better scope for learning and
sharing on life cycle basis which finally will lead for getting a better
solution for their concern that “what will happen to the child after us?”.
ü Parents particularly from rural areas do have
limited scope to participate in the processes of training and rehabilitation of
their ward at Centers / Institutions (which are away from the home &
community) managed by Government or Non Governmental Organizations.
ü The present pandemic Covid 19 has changed the
whole environment of training and rehabilitation of PWDs and put more pressure
on parents.
ü Parents do have several needs both to protect
themselves and their children with special needs.
ü The model of Training cum Rehabilitation
works from the stage of early identification to empowerment resulting for an independent
living with better sustainability and improved quality of life
ü The Disability Acts (as exclusive) and inclusive
focus more on the capabilities of PWDs putting questions on the barriers in the
environment.
ü The Institutional Based Rehabilitation do have
several advantages and limitations leaving less scope for the parents to be
part of this and to get empowered.
ü Community Based Rehabilitation working within the
community development as a strategy do have several advantages giving better
scope to Parents to get connected with their child’s rehabilitation as well as their
own empowerment with ownership.
ü CBR works (with multisectoral and multidisciplinary
approaches) with five domains covering Health, Education, Livelihoods, Social and
Empowerment and are effective empower the PWDs as well as their Parents with better
sustainability.
ü The initiatives are need based and the
resulted outputs, outcomes, and impact are significant with better scope for participation,
accountability and responsibility mostly on ownership.
ü The strategies and interventions deployed in
the processes of empowering PWDs and their Parents are need based, simple, flexible,
replicable, and sustainable matching to the dynamics of the given environment.
Recommendations
Disability is
dynamic and well linked with Poverty, and Development and its impact on the growth
and its sustainability of People and Community and gains priority for its continuation.
Some of the recommendations made include:
Ø To create awareness
on Community Based Rehabilitation with priority for multisectoral and
multidisciplinary approaches.
Ø To develop technologies
to move towards Digital Environment with better connectivity, relationship, teaching,
learning, sharing, documentation, monitoring, evaluation and reporting.
Ø To conduct more
and more Trainings, Workshops, and Seminars on the model of Empowerment with priority
for Community Based Rehabilitation.
Ø To develop Human
Resources (both formally and informally) at all levels with registry at RCI.
Ø To collaborate
with public utilities for addressing the challenges and needs of the PWDs and their
Parents with scope for ownership.
Ø To support NGOs
and other Service Providers to work with Government and private / Corporate on
partnership basis (known as Government – Private / Corporate - NGO Partnership –
GPNP).
........................................................................................
With thanks
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