Preamble
Primary
Caregivers of children with disability, especially Mothers are often left out
when drafting policies to support persons with disabilities and children with
disabilities.
In
Ghana, there is currently no accurate statistics of children with disabilities.
Again, Children with disabilities do not all fit into one cup and there is no
one-size fit all solution to support them.
The
Parent, usually the mothers are left to struggle to take care of children with
disabilities.
The
Special Mothers Project, a registered not-for profit organisation that
advocates for children with cerebral palsy and their families and families
raising children with disabilities in general advocates that there should be
policies to support parents of children with disabilities in Ghana.
Parents of children with disabilities do not fit into the various categories of disability and yet as Parents of children with disabilities especially the mothers literally become disabled for their children dealing with
stigma, exclusion and everything associated with disability
At the
workplace, most of them are seen as ineffective due to the many hospital
appointments and the demand of caring for a child with disability.
Many
organisations especially privately owned organisations tend to lay off parents
of children with special needs.
However,
it is three times more expensive to take care of a child with disability than
it is taking care of a regular child.
Most
parents need money for assistive devices, medication, paying for caregiver
services, therapy, extra transportation cost among others. Managing a child with
disability in Ghana is very expensive
The
Special Mothers Project suggests the following policies to government and
political parties to help enhance the lives of especially Special Needs Parents
Respite
Programmes
Government
should put in place programmes that will help provide respite for especially
mothers of children with disabilities by:
Creating
Respite Centres or facilities where parents of children with disabilities could
leave their children during the day or even at the weekend to enable them to
work and earn an income.
These
centres could employ trained Senior High School graduates to support the
children with feeding, and para-therapy services.
It will
also serve as a source of employment for the youth and those with a passion to
work with children with disabilities
Ensure
respite caregivers are trained to meet the unique needs of children with
disabilities.
Caregiver
Support Programme
The
government should also institute a caregiver support programme to support
children who cannot be taken to such centres at home.
A
directory of professionally trained caregivers by the Department of Social
Welfare could be a good resource for parents to get daily, weekly or monthly
respite at affordable prices, possibly subsidized by the Government.
SHS
Graduates could also be engaged to be trained and work as Caregiver support for
families, some will identify with it as a passion, and it will serve as an
employment avenue for many youths.
Caregiving
is decent work and it’s a big deal in some developed countries. Caregiving jobs
cannot be replaced by Artificial Intelligence.
Implement
Inclusive Education Policy
Government
should implement the Inclusive Education policy – Every government school
should create a unit where children with different categories of disability
could be schooled and integrated with the mainstream students.
We
suggest that in line with the Inclusive Education Policy, every Government
school will have a Special Unit attached where parents within the community
could leave their children with cerebral palsy and other disabilities to enable
them to go and work and come back to pick their children.
This
will give children the opportunity to know and learn about children with
special needs at first hand. It will also increase empathy in regular children,
and it will reduce stigma.
Government
should absorb the trained Community Based Rehabilitation graduates to help with
the handling of children with cerebral palsy in all government school setting,
in line with the Inclusive Education Policy
Recently
graduated teachers should also be trained and attached to selected schools and
community centers to help with the handling of children with cerebral palsy and
other disabilities.
Government
should employs National Service Persons
who have studied Disability and Rehabilitation Studies and attach them to the
unit to run an eight to five system that fits the schedule of most working
parents
The
Special Mothers will be happy to provide practical training to the National
Service Persons if need be.
Most
regular children enroll into crèche as early as six months, however a child
with cerebral palsy is not allowed into school or an educational centre
sometimes forever in their lives due to their disorder. We therefore appeal to
the President to direct the creation of Inclusive Community Early Childhood
Centers for CP children.
Health
Sector Reforms
The
government should engage unemployed nurses, to be trained in basic
physiotherapy and assigned to selected polyclinics and schools to cut the
distances mothers have to travel to the major hospitals for physiotherapy.
The
need for early identification and intervention of children with cerebral palsy
should be prioritized. Most parents have had to contend with either the lack of
diagnoses or late diagnoses of their child’s illness which denies them the
opportunity to seek early intervention; or push many of them to resort to
spiritual help.
The
National Health Insurance Scheme should absorb the cost of medications needed
for children with cerebral palsy and other disabilities and also the cost of
therapy such as physiotherapy, occupational therapy and speech therapy as well
as the cost of seeing a counselor or psychologist for emotional support.
Disability
Support Fund
Government
should create a fund that supports parents of children with disabilities. This
fund should be used to support healthcare and medication. The purchase of
assistive devices, Education and also as start-up capital for parents who may
want to engage in entrepreneurship.
Transportation
Policy
Ghana
lacks accessible transportation: There
is the need for the government to provide
accessible transportation options, including wheelchair-accessible vehicles and
public transportation.
Transportation subsidies: Government could also offer transportation
subsidies or reimbursements to support families in transporting their child
with a disability.
Workplace
Policies to support Parents of children with disabilities
Flexible
Work Arrangements
Flexible
hours will allow parents to adjust their work schedules to accommodate their
child's needs, such as medical appointments or therapy sessions.
Telecommuting:
Offer remote work options to enable parents to balance work and caregiving
responsibilities.
Compressed
workweeks: Allow parents to work longer hours on fewer days to accommodate
their child's needs.
Family
leave: Provide paid or unpaid leave for parents to care for their child with a
disability, including medical appointments, therapy sessions, and
hospitalizations.
Sick leave: Allow parents to use sick leave to
care for their child with a disability.
Bereavement leave: Provide leave for parents
to grieve the loss of a child with a disability.
Support for Caregiving Responsibilities
Dependent care assistance: Offer financial
assistance or resources to help parents pay for dependent care, such as
childcare or respite care.
Employee
assistance programs (EAPs): Provide access to counseling, therapy, or other
support services to help parents manage caregiving stress.
Disability
awareness training: Offer training to employees and managers on disability
awareness, inclusion, and support.
Regular
check-ins: Regularly check-in with parents to discuss their needs, concerns,
and progress.
Open-door policy: Encourage an open-door
policy where parents feel comfortable discussing their needs and concerns.
Government
support for Parent Support Platforms
The
Special Mothers Project among other things guides parents on the pathway to
effectively handle their children, provide counselling support and point them
to available resources and support systems.
The Project links parents with one another as a form of peer support and guidance, however, there is absolutely no support for such a programme and many parents tend to wander till they find it.
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The
Special Mothers Project supports parents of children with disabilities to develop
individualized support plans, addressing their unique needs and concerns as
well as provide emotional support and counseling to family members,
acknowledging the emotional impact of caring for a child with a disability.
Government
support for publicity, education and awareness creation could also help provide
early counselling and intervention for most families.
In
Ghana, many people tend to lump all children with disabilities together,
however, a child with autism may be entirely different from a child with
cerebral palsy, a child with autism may have completely different needs from a
child with cerebral palsy.
In
developing a policy, care must be taken to address the uniqueness of each
disability to ensure that no group of children with a specific special need is
left behind in our attempt to achieve Inclusive development.
