Policy suggestions to support parent caregivers of children with disability in Ghana

 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.

 

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.