NPP will mainstream disability issues in their Manifesto – Committee

 

Mrs Ama Serwah Nerquaye-Tetteh, Gender, Children and Social Protection Coordinator of the NPP Manifesto committee, has said that the Party would mainstream disability issues in their manifesto. 

She said every sector of the economy would be encouraged to include disability issues to ensure inclusion become part and parcel of everything we do as a country. 

“Disability issues will be on the main menu and not be treated as a supplementary dish,” she said when the Gender, Children and Social Protection Committee of the NPP Manifesto committee met with the Manifesto Committee of the Ghana Federation of Disability Organisation (GFD) to discuss issues of importance to them. 

The Gender, Children and Social Protection Committee of the NPP Committee will prioritise social protection issues to facilitate the inclusion of persons with disabilities and children with disabilities in our development agenda. 

Mrs Nerquaye-Tetteh, who particularly highlighted the importance of the inclusion of children with disabilities in development, said equal opportunities should start right from the beginning to change the mindset of the populace about persons with disabilities. 

She applauded the GFD for the development of the Disability Manifesto to guide political parties to include disability issues in their manifestos. 

Mr Auberon Jeleel Odoom, Chairman of the GFD Manifesto Committee, urged the NPP Manifesto Committee to invest heavily in the implementation of Inclusive Education and explained that it would help regular children to become empathetic and supportive of children with disabilities. 

He said even though Ghana had approximately 2.4 million people with disabilities, the effective implementation of disability- inclusive policies and programmes remain inadequate. 

“Persons with disabilities continue to encounter significant barriers in accessing essential services such as education, healthcare, employment and social support,” Mr Odoom said, and urged political parties to pay attention and commit to the concerns and aspirations of persons with disabilities. 

Staff of Fidelity Bank interacts with Special Needs Mothers to celebrate Valentines day

Fidelity Bank,  Accra East Sector,  spent the morning of 14th February,  2024 Interacting with Mothers of children with disabilities 

The Mothers drawn from various disability groups shared their lived experiences with the staff of the Bank urging them to be involved in advocacy for support systems for them.

Mrs Hannah Awadzi,  Executive Director of the Special Mothers Project,  who chaired the event,  while commending the Bank for the initiative,  urged them to open their doors to learn about issues that affected children with disabilities. 

"Children with Disabilities are diverse,  there are children with Cerebral palsy, Autism, Down syndrome,  tourette syndrome among others who are all diverse and affected by similar but also unique issues,  she said.

Some of the Special Needs Mothers called on the bank and other corporate organisations to look into creating support systems for families. 

Support systems include having day care centres for children with disabilities as well as advocating for policies that will enhance the lives of families of children with disabilities.

Ms Lila Daisy Hagan, Branch Manager at the Ridge Towers branch of Fidelity Bank,  said as part of their Corporate Social Responsibility,  they wanted to pay attention to Mothers of children with disabilities since they are mostly neglected in the conversation around children with disabilities. 

The staff of Fidelity Bank served the Mothers a variety of dishes in addition to giving them parcels 

The Ghana Federation of Disability Organisations (GFD) that coordinated the event also expressed their appreciation to Fidelity Bank and called on other corporate organisations to emulate the gesture

Introduce Measures to support families of persons with disabilities – Disability Manifesto

 

The Ghana Federation of Disability Organisations (GFD) has called on political parties to introduce measures to support families of persons with disabilities in their various manifestoes.

 

The GFD specifically called on political parties and policy makers to support those who act as informal carers, to support and empower them to manage their caring responsibilities, to remain active in employment, to maintain good health, and to have a life outside of caring.

 

Such measures, the GFD said, should also seek to prevent situations where family members with caring responsibilities are disadvantaged or discriminated against.

 

The Advocacy Committee of the Ghana Federation of Disability Organizations (GFD) has spearheaded the development of a Disability Manifesto for the 2024 elections.

 

Mr Auberon Jeleel Odoom, Chairman of the Manifesto Committee told the Special Mothers Project, an advocacy and Awareness creation programme on Cerebral Palsy issues  that the manifesto will serve as a roadmap to guide policymakers and political leaders in formulating inclusive policies and implementing effective measures to ensure the full participation and empowerment of persons with disabilities in all aspects of Ghanaian society.

 

The manifesto also advocates for the establishment of comprehensive social protection programmes that provide financial support, healthcare, and other essential services to persons with disabilities, families affected by disability, and caregivers of persons with disabilities.

 

Mr Odoom said over the years, political parties have often not involved organizations of persons with disabilities in the development of their manifestoes, which mostly resulted in limited consideration for disability issues in their manifestoes.

 

“With the 2024 elections approaching, political parties must give due attention to the concerns and aspirations of this marginalized segment of society.”

 

The GFD's Disability Manifesto represents a collective effort to address the challenges faced by persons with disabilities in Ghana and to chart a path toward greater inclusion and empowerment.

The Manifesto was arrived at through a nationwide process of consultation within the Ghana Federation of Disability Organizations and its members, as well as its regional branches.

The Manifesto represents a collective effort to address the challenges faced by persons with disabilities in Ghana and to chart a path toward greater inclusion and empowerment, Mr Odoom Said.

The Special Mothers Project is an advocacy and awareness creation programme on cerebral palsy issues and issues affecting families of children with cerebral palsy. Share your issues with us

My child must die before me

 Four months into marriage, Yaayaa (not the real name) realized she was pregnant, her joy knew no bounds as she had always wanted to experience being a mom.

Yaayaa worked in one of the prestigious banks in Ghana and she had her plan drawn out, how she was going to juggle being a mom and being a career woman.

She was also progressing steadily in her job which gave her a lot of satisfaction. Nine months came so quickly and soon it was time for baby to come.

Everything went as expected with the childbirth, it was a baby boy, but somehow the baby didn’t cry after birth. It looked like something was wrong, but the medics could not point out exactly what was wrong.

The baby was taken to the neonatal intensive care unit (NICU) of the hospital, while in NICU the baby even developed neonatal jaundice.

After about two weeks, Yaayaa and her baby were discharged from the hospital. In Yaayaa’s mind everything was alright.

Baby seemed to be growing well and it was all joy, soon it was time for Yaayaa to resume official work and she happily did, but her work was no longer going to be the same.

It was one challenge after the other, almost every week ended with her at the hospital with the baby, after a lot of hospital visits and not being sure what was particularly wrong with the child, doctors told her, her child may be having cerebral palsy.

Cerebral Palsy

Cerebral palsy is a neurological condition that affects the movement and sometimes the speech of a growing child. It is caused by an injury to a child developing brain, this injury could happen either during pregnancy, during childbirth or shortly after birth.

Cerebral palsy is the number cause of physical disability in childhood, and it has no cure.

Looking for Solution

Yaayaa did not know how to take the news of her child’s diagnosis, it was time to look for a solution, she told herself.

The months that followed her child’s diagnosis was uncertain or unstable, she found herself either consulting a herbalist, a pastor, a fetish or one medical doctor or another.

It also became a life of hopping from one pastor to another seeking solutions to her child’s challenge.

At work, Yaayaa was always full of excuses, she always came in with one excuse or the other her child was constantly sick, and she needed help.

After about four years into her child’s diagnosis, she decided to resign from her official work and concentrate fully on taking care of her son.

Her son was growing but there was no improvement in his condition, at age seven, Yaayaa’s son could still not sit, crawl, or do anything independently.

Yaayaa had been taking her child for physical therapy sessions as doctors recommended and yet there seemed to be no improvement at all.

Complicated Challenges

But that was not the end of Yaayaa’s problems, her husband also started developing some strange attitude, her once lovely husband will now stay so late at work, wasn’t supporting her at home at all and worse of all stopped providing for the home.

Before Yaayaa could understand what was happening to her husband, she got to know that her husband now had a mistress and had even had a child with his mistress.

Yaayaa became a single mother to her son with cerebral palsy because her husband eventually left her. She resorted to all kinds of jobs to make ends meet.

Maintaining her son who was growing in age but not growing in skills was very expensive. At age 14, her son was still using diapers since he couldn’t achieve toilet training. Yaayaa had to be there to feed her son, attend to his toilet needs, bathe him and do just anything thing for him. Her son could not achieve any independent living skills.

Sometimes, she would leave her son alone in the room and go and sell or go and wash peoples clothing to enable her to earn an income.

Yaayaa told the media that she did all kinds of jobs sometimes neglecting her son to be able to survive for one more day.

The Parents Support Group

When her son was 19 years old, someone introduced her to a parents support group, the Special Mothers Project. There she met other parents; they shared ideas and experiences as well as offered physical support to one another.

The Special Mothers Project apart from engaging in advocacy on issues affecting children with cerebral palsy and their families also connect parents with the limited but available support systems in Ghana.

It was during one of the regular discussions on their WhatsApp platform that Yaayaa shared her story with her 19-year-old son.

The other parents on the platform touched by her story decided to contribute money to support one of their own. The platform realized quite a substantial amount of money for Yaayaa and helped her set up a grocery shop to enable her to earn some steady income and have time to take care of her son.

A year went by and Yaayaa was doing so well with her shop, she reported back to the group.

Support Systems

She told the media that even though she is in a much better place and can support her son, there are no formalized support systems in Ghana to support persons like her or families of children with disabilities.

“There is no place, I can take my now 20-year-old son for recreation or even rehabilitation, I couldn’t even take him to a formal school because Public schools and facilities that take care of the needs of children and adults with cerebral palsy do not exist in Ghana.”

Yaayaa said “I am in a better place than I use to be, I am happier, my son is happier but there is one thing I wish and pray for:  My child must die before me.”

“If I die who will take care of my son, who? She asked, there are no facilities, there are no institutions with trained caregivers on how to manage a person with moderate to severe cerebral palsy in Ghana,” she said.

Usually, the burden of care is on the family especially the mother, sometimes even family members shun taking care of persons with moderate to severe cerebral palsy, that is why we need the government to put in place, programmes and policies that would facilitate the care of children with cerebral palsy outside of the nuclear family.

Yaayaa called on the government to pay attention especially to the needs of children or persons with cerebral palsy and their families in Ghana, since they have been excluded for so long.

PS: Even though it is a true story, the names and situation in this article have been changed to protect the identity of the people involved.