NGO Bemoans Lack of Specialist Health Service for Persons with Autism

Hannah Awadzi

Mr Auberon Jeleel Odoom, National Coordinator of Inclusion Ghana, a non governmental organization working to reduce stigmatization and ensure full inclusion of all persons with intellectual abilities has bemoaned the significant lack of specialist health service  for persons with Autism.

He said diagnosis and treatment of persons with autism were often hampered by a lack of training of health professionals, communication barriers, a lack of coordinated car, insufficient health outreach programmes and a lack of appropriate policies.

Mr Odoom was speaking at the Accra Autism Conference on the theme: A Parents Perspective, organized by the Autism Society of West Africa. The conference attracted parents of children with autism, caregivers, health professional, Heads and staff of Special Schools and specialist in the field such as speecj therapist, physiotherapist, Psychologists among others.

"Autism is usually diagnosed by behavioural evidence such as observing the child or obtaining a history on the child's development from parents, caregivers or speech pathologist. In Ghana we have only a few physician, psychologist or developmental pediatrician who are able to provide the formal diagnosis," he said

"Ghana's National Health Insurance Scheme does not cover autism services and support, however, although not legislated to do so, the new Ghana National Health Insurance Act of Parliament sets out an exemption clause for persons with autism to access free health care and this includes premium exemptions," He revealed.

Mr Odoom noted that in the absence of equal access to health care or an inclusive health care system, persons with autism were at serious risk of delayed diagnosis, persistent abuse, depleted social capital ad isolation.

He pointed out that numerous studies indicated that early intervention could significantly enhance outcomes for children with autism, stressing that early diagnosis was key.

There are no more than 15 persons providing speech and language services, an important rehabilitation service for persons with autism, Mr Odoom said, drawing attention to the need  for a significant larger number of specialists across Ghana to ensure that persons with autism have their disability diagnoses and receive proper health care.

In a speech read on her behalf, Mrs Dela Sowah, Deputy Minister of Gender, Children and Social Protection said there was the need to conduct research into country specific situation on autism to inform interventions by relevant stakeholders.

"We also need to increase frequency of events such as these to be able to sensitize and build care skills," she said.

She also said there was the urgent need to develop a strategy to ensure that special schools were adequately resourced to effectively carry out their mandate and called  on the corporate world and individuals to embrace and support special schools to enable them to continue to inspire, empower and give hope to persons with autism and other persons with disability.

Dr Bolanle Adewole of The Learning Place, a Nigerian NGO who presented a similar overview of how such persons are able to access health, education and other basic amenities in Nigeria, said one strategy her organization was using to reach to mothers and caregivers was to organize periodic training for them to enable them efficiently handle such children.

Mrs Serwaa Quaynor of the Autism Awareness, Care and Training Centre who also spoke from a mother's perspective called for support for mothers, saying most mothers go through anger, denial, and depression before they are able to accept the situation.

She called for enhanced collaboration between special schools and centres and more support for mothers who may not have the finances to support their children through special education.

Journalist launches Project to reach out to "Special Mothers"

Mrs Hannah Awadzi, a Journalist with the Ghana News Agency has launched a project to reach out to mothers with children who have developmental challenges

The project dubbed: "Project Eyram" seeks to identify mothers with children who have developmental challenges and encourage them, show them love, encourage them to share their experiences and get them in contact with existing non governmental organizations that are already serving as parental support.

In a statement issued to the media, Mrs Awadzi said such mothers are usually left to be depressed and to grapple with the challenge they have on their hands alone.

"We do not have enough or adequate  social support system for such parents and it can be very traumatic especially for first time mothers who are faced with such challenges. Many women end up getting divorced because they had such children," she said, adding that children are suppose to be a source of joy to new families rather than a cause of divorce.

Mrs Awadzi said sometimes the society tend to stigmatize such mothers because of their children  and some of the mothers are even intimidated to the point of hiding their children.

"I want to encourage such mothers to be proud of their challenged children, show them all the love that thet can, and seek support," These children have special abilities, she added.

She said as part of the project, a book that documents a mothers experience with a special child and how the society reacts will be launched.

She also pointed out that the project had a facebook page and a blog  "project Eyram" where mother could
visit to seek information. People can also contact Project Eyram on 0503878779

Mrs Awadzi commended organizations such as ShareCare Ghana for being the pacesetters

Project Eyram Concept Note

Project Eyram, initiated by Mrs Hannah Awadzi is a project that seeks to reach out to mothers. I call the mothers I want to reach out to “Special Mothers” because they have Special children. I am referring to mothers with children who are Cerebral Palsy.

Cerebral palsy (CP) is a disorder that affects muscle tone, movement, and motor skills (the ability to move in a coordinated and purposeful way) that makes these children unable to sit, walk stand nor talk initially, however some of the children are able to achieve all their developmental milestones later.

These Special mothers need encouragement and support from their families, communities, societies and the nation as a whole to prevent them from being depressed and in extreme cases to lose their lives.

Sometimes by virtue of the fact that a woman gave birth to a child with Cerebral Palsy her marriage is affected and about 70 percent of Ghanaian women who has children with this disease end up having their husbands leave them and having to care for the children alone.

These special mothers need to be loved rather than being stigmatized because of their children and the society as a whole need to recognize that these children also have potentials and can actually contribute immensely to society’s development.

The Mothers are left traumatized and the society usually tries to find a cause for their children's illness, these children are most often than not referred to as cursed children however Ghana has a bright example to look up to.

 Farida Nana Efua Bedwei is a Ghanaian software engineer has a shinning example that our society can look up to.

These Special mothers need information about the disease their children is suffering and how to handle the children.

Ultimately, I believe that these Special mothers need to come together to share their experiences and learn from each other on how they have been able to handle their special children. These special mothers need to talk about their successes and their failures and need good social support systems

What makes them happy with their children and also share their frustrations.

Project Eyram seeks to bring together these special mothers into  contact with existing groups with similar interest and endeavour to bring more mothers together to share information and generate more strength while encouraging them with hope.

PROJECT BACKGROUND

Hannah Awadzi is a mother of two wonderful and blessed children. Her first daughter Eyram was diagnosed with Cerebral Palsy at eight month.

“I was very depressed, devastated, I asked why me several times, in fact I got to the point where I even felt that death was okay, however, I did not cease to pray about the situation, I use to pray day and night. I spent long hours seeking the Lord’s face and yearning that God speak concerning my daughter. I still have a lot of faith that my daughter will walk and achieve her God-given assignment on earth.

One day, I read a book that talked about appreciating God and I started practicing it and that turned my life around. I was now very excited about my daughter. I started calling her a blessing and I felt real joy within.

After sometime, I started reaching out to people with similar challenges and anytime, I was able to do that I experienced a higher level of joy.

Ultimately, I will publish a book that document my experiences as well as other peoples experiences and how I have being able to deal with this issue so far.

#My advice to all Ghanaians is that let’s begin to reach out to others, let’s begin to share our pain as well as our joy for in doing that you might be solving another person’s problem