Thursday, June 14, 2018

Cerebral Palsy and the service providers in Ghana

Kofi is a five year old boy with cerebral palsy; it looks like he has the severe type of cerebral palsy and does have seizures regularly.

Kofi responds well to his environment even though has cannot move at all, most importantly Kofi’s family love him and want to get the best for him. The family has hope that once Kofi is alive then God has some good plans install for him.

They are patient with Kofi to see how God will unveil His plans for him, However, Kofi’s mum Akua (Not the real name) has some challenges, challenges with moving Kofi not just in and around the house.

Akua will love to take Kofi for a stroll in the neighbourhood or put him on the Veranda for him to enjoy some fresh air but that seems to be a bit of a challenge, he does not have the suitable equipment to do that.

Kofi has to be carried if he has to be moved from one place to the other and the mother cannot carry him for a long time, he is getting heavier by the day

Akua called the Special Mothers Project, an advocacy and awareness creation programme on cerebral palsy issues in Ghana, and ask, is there any organization that brings in equipment, that is not too heavy to push around, has wheels and is suitable for a child with cerebral palsy? I will love to have something like that for Kofi but I don’t seem to get anything like that.

Akua says, I have scanned around some shops and have also seen some of the second hand disability equipment that is usually sold along the streets in town, I can’t seem to find anything that will be suitable for a child with cerebral palsy, do you know any organization that can bring in such equipment for us to buy, even if we can pay in installments, some of these equipment will be really helpful and make our lives easier.

The Special Mothers project links parents to the limited but available support services in Ghana, on an average day the project answers about 10 calls or more from parents seeking one service or the other for their children with cerebral palsy.

Mrs Hannah Awadzi, Executive Director of the Special Mothers Project says, “I will be happier if there were more options to points parents to, there are a few organizations providing services for children with cerebral palsy, it gets overwhelming and it can be frustrating for most parents

Akua is not alone, many parents or families raising children with cerebral palsy are looking for services that can make their lives a bit easier. They want to have an enhanced life but there are no service providers in Ghana.

Cerebral palsy seems to be the last on the agenda for any person until it has affected you in one way or the other, until recently no one really talked about cerebral palsy. We are familiar with hearing mothers of children with autism talk and provide services within that community but not cerebral palsy.

Cerebral palsy, a neurological disorder that affects the movement and sometimes speech of children is quite different from autism or down syndrome but in Ghana is looks like all children with disabilities have been lumped together and most of the time a one size fit all policy solution is suppose to solve all the challenges that families face.

For example, a child with mild to moderate cerebral palsy is suppose to be in the mainstream school, however for the lack of understanding and awareness creation, such a child is usually refused admission in both a mainstream schools and  special schools.

Every parent of a child with cerebral palsy knows that the children do better when they mix with regular children, they are motivated to keep trying their movement skills and it really helps with improving the speech.

However, in Ghana, a child with cerebral palsy, be it mild or moderate is best kept at home unless the parents are really influential or are rich to pay extra for everything else.

Emelia Gyenkel, mother of Nana Yaw with cerebral palsy who has kept her son in a mainstream school for about four years now says, “I pay extra, I pay for care giver, I pay for extra attention, I pay higher than the average child in the school.”

But Emelia is thankful that at least her boy can go to school, because she sees Nana improving steadily but gradually as he mingles with the regular children.

The lack of support services be it professional care givers, suitable mobility equipment, the lack of educational facilities that understands the condition of a child with cerebral palsy and many others is perhaps what has contributed to the desperation and frustrations of many families raising children with cerebral palsy.

The Special Mothers Project in our advocacy for the last two years have called for one stop educational setting or facilities where children are well taken care of, where therapy is done as part of learning, where equipments are available to support the movement of children with cerebral palsy within and out of the facility.

The project has offered to organize workshops and training for organizations on cerebral palsy and how they can be involved while empowering parents to venture into the special needs, cerebral palsy service provision.

The project is also urging especially the youth to build careers around supporting children with cerebral palsy specifically since many homes are yearning for such service providers

As the world prepares for the Global Disability Summit in July this year, DFID’s vision for disability inclusion is: ‘to ensure people with disabilities are consistently and systematically included in international development and humanitarian assistance’

DFID says “We will host a Global Disability Summit in July this year to galvanise the global effort to address disability inclusion in the poorest countries in the world and act as the start point for major change on this neglected issue 

The objectives of the Summit will be to raise global attention and focus on a neglected area;bring in new voices and approaches to broaden engagement; mobilise new global and national commitments on disability; and showcase best practice and evidence from across the world.

Monday, May 28, 2018

We do not want to benefit from LEAP – CP Parents

Some mothers of children with cerebral palsy are kicking against the government’s LEAP/NHIS policy announcement for children with cerebral palsy.

The mothers said they will prefer to access the disability common fund to enable them set up small and medium enterprises that provides them and their children with long term security

Mrs Ellen Affam-Dadzie, Spokes person for the group and Executive Director of the With God Cerebral Palsy Centre, said many of the mothers will prefer to have start up capitals from the percentage of District Assembly Common Fund rather than putting them on the Livelihood Empowerment against Poverty (LEAP) programme

“Putting children with cerebral palsy on the LEAP programme is not sustainable, the mothers want to go into entrepreneurship, we need start ups to be able to do this, we do not want the LEAP,” she said in an interview with the media

Mrs Affam-Dadzie therefore urged government to revisit the decision of putting children with cerebral palsy on the LEAP programme.

“We are available for dialogue with the government, there are organizations such as the Special Mothers Project, an advocacy and awareness creation programme on cerebral palsy that can assist with appropriate policies suitable for families raising children with cerebral palsy

Cerebral palsy is a neurological condition that affects movement and sometimes speech of children; it is the number one cause of disability in childhood.

In Ghana there are no concrete policies for children with cerebral palsy, many parents especially mothers are forced to abandon their career to take care of their children with cerebral palsy at home.

The Ministry of Gender, Children and Social Protection announced last year that children with cerebral palsy were going to benefit from LEAP and free Health Insurance Registration.

Sunday, May 27, 2018

Health Sector’s knowledge on Cerebral Palsy Limited – Research

 Knowledge on cerebral palsy among health care professionals is low compared to other disabilities, Dr Kwame Sakyi, Director of the Centre for Learning and Childhood Development said on Saturday

He said a survey conducted among health care professionals show that only about 35 per cent of health care professionals understands and are able to manage cerebral palsy.

Dr Sakyi said this at an Information seminar organized by the Special Mothers Project an advocacy and awareness creation programme on cerebral palsy for parents of children with cerebral palsy.

He therefore called for training of more health care professionals on the condition to lessen the burden of managing the condition on parents

He also suggested that health care professionals consider the inputs of parents on how the condition is managed to make it the management of cerebral palsy more efficient for both sides.

Dr Sakyi who is also an Assistant Professor at Oakland University further announced that his organization is in the process of developing a database on children with developmental delays to make it easy for policy makers to take concrete decisions on the condition.

He said they will also develop a system that makes it easy for health care professional to refer parents to the appropriate services, explaining that  the referral system make it even more frustrating for parents since they are scattered

Mrs Hannah Awadzi, Executive Director of the Special Mothers Project, noted that the project is concerned about the emotional and psychological well being of especially mothers.

“We do not oppose medical intervention; however, we want to make it easier for parents to manage the condition”

She called on parents to get and board and help create support systems that make the lives of families raising children with cerebral palsy a bit easier.

Mr Prince Osei-Wusu, a research official of CLCD took parents through some of the issues they encountered in the course of the research.

Sunday, April 29, 2018

Negative attitudes from teacher hindering realization of inclusive education policy

 Dr Mathew Opoku Prempeh, Minister of Education has said that negative attitudes from mainstream teachers and pupils towards children with special needs inhibit the full realization of the inclusive education policy

He also acknowledged that logistics issues as well as a lack of adequately skilled staff to respond to the specific needs of children with special needs was another challenge to implementing the inclusive education policy

In a speech read of his behalf by Mr Anthony Boateng, Deputy Director General of the Ghana Education Service, he said: “We cannot and must not waver from our moral obligation to promote a fully inclusive society. We must challenge ourselves and each other to put in pragmatic measures that truly address the issue in a meaningful and impactful manner

The Minister of Education said this at Special Education Show on Saturday by the Rex Yankey Otoo Foundation. The show attracted stakeholders providing various services for special needs education.

Dr Opoku-Prempeh said “We must intensify our public education efforts regarding societal attitudes to persons with disabilities. The media has a huge role to play in reaching out through sensitization programmes on their platform.”

The Minister of education said it was important to ensure that children with special needs do not miss out on their education simply because of their condition.

“Government of Ghana has been unrelenting in its bid to provide all children with every opportunity  to get an education,” he said pointing out that education was core to a productive and skilled workforce  fit and relevant for the purposes of a 21st century society.

Dr Opoku-Prempeh urged organizations  to consider supporting special education and special needs programmes as part of their corporate social responsibility and said with respect to special education, 

we encourage organizations to do more in aligning their corporate social responsibility.

He said that will help with awareness creation and dispel some of the stigma and prejudice  in some minds towards special education needs and disability in general.

The Minister said a society’s measure of its humanity is how it treats its weakest and most vulnerable members.

“Individuals, the media, civil society, traditional rulers and religious organizations all have a role to play to ensure that our vulnerable citizens are treated with dignity and respect,” he added

Friday, April 27, 2018

Family of a boy with cerebral palsy seek help

 The family of a 14 year old boy with cerebral palsy is calling for support from the First Lady, Mrs Rebecca Akufo – Addo to give the boy a meaningful life

The family living in village called Quashie in the Eastern region has also expressed wishes for the boy to be accepted in a boarding facility since the mother of the boy passed on about a month ago

The boy who is severely malnourished is now in the care of her 90 year old grandmother and her father who has six other children apart from him.

Mr Samuel Acquah, Father of the child told the media that it’s been difficult taking care of the boy since the mum died about a month ago.

He said “I am a man and cannot be there for the child all the time so my aged mother has taken over that role but it’s difficult.

Mr Acquah known in the town as Kwaku Boi said he wish there was a boarding facility that took care of children with cerebral palsy.

“If we get a school that has boarding facilities and can take care of a child with cerebral palsy, we will be happy to take him there but again we need government to help us with the finances

Mrs Hannah Awadzi, Executive Director of the Special Mothers Project, an advocacy and awareness creation programme on cerebral palsy visited the family to share words of encouragement as well as share experiences on how to manage a child with cerebral palsy

She said the project links families raising children with cerebral palsy to the limited but available support services in Ghana and promised to share the story of the family with the media to get the necessary attention.

Mrs Awadzi said the Special Mothers Project also hope to organize regular and periodic workshops for journalists in Ghana to enhance understanding and coverage of issues on cerebral palsy

“We need the media to understand the situation of such families and be able to help seek appropriate governmental policy interventions for children with cerebral palsy.”

She called on the government to engage parents of children with cerebral palsy when drafting policies that concerns such children.