Special Mothers Project Annual report 2024

 Deepened Collaboration

The Special Mothers Project became an affiliate member to the Ghana Federation of Disability Organisations (GFD) at the end of the year 2023, deepening our collaboration with other disabled peoples’ organisation.

This affiliation was beneficial to the project, the Special Needs parenting community accessed information on opportunities within the Disability community.

Some of our Special needs Mothers participated in training programmes and workshops to build their capacity in advocacy.

The Special Mothers Project continues to serve as a hub of information on Cerebral palsy issues and issues affecting families raising children with Cerebral palsy and other disabilities.

Media activities

The project highlighted some issues affecting families of children with various disabilities using the media and social media to create awareness and solicit empathy with the aim of influencing policies that will enhance the lives of families of Special needs children

The Special Mothers Project continued to support some parents with handouts and foodstuff throughout the year.

The handouts are usually donations from people who admire the work we do.

Donations

In 2024, the Special Mothers Project received two major donations. 

Dr Mabel Oti-Boadi donated lots of items including foodstuff to mark her birthday.

Red Devils Ghana also donated items during the football off season

Newsletter

The Special Mothers Project introduced a newsletter.  The newsletter will be a quarterly one that shares our programmes and activities.  The newsletter will also feature guest activities that aligns with our vision.

World CP Day 2024

World CP Day: The Special Mothers Project used our social media platforms to create awareness during World CP Day.  We are glad that some of our pictures got featured on the World CP Day social media platforms.

Election Activities

2024 was an election year and the Special Mothers Project joined the GFD to interact with the two major political parties in Ghana.

The Special Mothers Project also sent policy suggestions to the two major political parties in Ghana.

 

Meeting with Mrs Alma Prempeh

Meeting with Mrs Alma Prempeh: - The Special Mothers Project had a meeting with Mrs Alma Prempeh, wife of Dr Matthew Opoku Prempeh, running mate to the NPP's Dr Bawumia.

Mrs Prempeh donated cloths, hair dryers, sewing machines and cash to support the Mothers’ go into micro businesses.

Partnership with Rotary Club Accra Teshie-Nungua

The Special Mothers Project is Partnering with the Rotary Club of Accra-Teshie-Nungua for a project intended to support three organisations that support persons with Cerebral Palsy and mental health.

The club donated two wheelchairs, one adult wheelchair and one wheelchair suitable for children to the Special Mothers Project. The project has since given the wheelchairs out to members who needed it.

Giving back to society

The Special Mothers Project will crown the year with a give back activity to a mother who reached out to us. She has two children with Cerebral palsy, the project will donate some money to enable her start a micro business and also some foodstuff as our token of love to her and the children.

Way Forward

For the coming year, the Special Mothers Project will focus on parents’ empowerment and training.

The Special Mothers Project will therefore launch a programme dubbed: " Life beyond diagnosis " to support parents to create a self development plan.

The Life beyond diagnosis programme will use coaching, mentoring and counselling to empower the parents.

Continued Advocacy

The Special Mothers Project will continue with advocacy on issues affecting children with cerebral palsy and other disabilities and issues affecting families raising children with disabilities in general. The project will continue to talk about access to quality and inclusive healthcare, Inclusive Education issues, setting up modern rehabilitation centres where parents whose children are unable to access the educational system can drop them off and pick them up by close of day, caregiver programmes and training of caregivers among others.

The project will be glad to have a constituent radio or TV programme to create awareness and educate the public on such issues

Collaboration and partnership

 The Special Mothers Project is open to collaboration and partnership with organisations pursuing similar initiatives and organisations that believes in our mission to support and enhance the lives of families of children with Cerebral palsy and other disabilities

Our Advocacy in the coming year will focus on getting government to make laws and policies that supports parent caregivers to thrive and live an enhanced life.

The Special Mothers Project continues to serve as a resource for researchers working in the area of Special needs children and mental health issues.

Financial Report

Our Financial Report for the year 2024 will be submitted to our auditors in January 2025. The Audited financial report will be published on our website specialmothers.org

Accepting Donations

The Special Mothers Project now accept donations to facilitate the work: all donations can be sent to

Special Mothers Project

ADB Ring Road Branch

Account number: 1011010126145301

Or Mobile Money number: 0244547980

GFD urged to intensify advocacy on the inclusion of Special needs parents in policies and laws

Parents of children with disabilities indirectly experience discrimination, exclusion abuse and stigma just as persons with disabilities

 

Mrs Hannah Awadzi, Executive Director of the Special Mothers Project, an advocacy and awareness creation programme on Cerebral palsy issues has therefore called on the Ghana Federation of Disability Organisations (GFD) to intensify advocacy on the inclusion of Special needs parents in policies and laws.

 

She made the call at workshop organised by the GFD to build the capacity of the advocacy committee on the National Development Planning Commission four-year development plan.

 

The workshop explored how the NDPC's development plan aligned with disability inclusion goals, the Inclusive Education Policy and other issues.

 

Mrs Awadzi said, there are no policies to support parents of children with disabilities in Ghana, yet the parents’ well-being is directly linked to the well-being of the child with disability.

 

"Parents experience exclusion, discrimination, stigma and abuse because of their children and there are no policies to protect them, " Special needs parents are indirectly disabled" She added.

 

Mr Porekuu Peter Francis Xavier, Principal Planning Analyst at the NDPC who took participants through the development planning process advised the GFD to work towards mainstreaming their issues in the development process right from the District Assemblies.

 

He said the NDPC was particular about human capital development strategies which focused mainly on investing in human beings.

 

He said the development Planning process encouraged Special interests’ groups to submit their needs to the district Assemblies and nominate representatives to be part of the planning committees.

 

Mr Abdul Wahab Adams, Programme Officer at the GFD said the organisation was moving towards engaging in results-based advocacy and urged members of the advocacy committee to build their capacity towards that.

I want to be the person who advocates for the vulnerable and voiceless – Mrs Prempeh

 

Mrs Alma Prempeh, wife of the NPP's running mate, Dr Matthew Opoku Prempeh has committed to become an advocate for the vulnerable and voiceless in society

She said" I want to be the person who advocates for the vulnerable and voiceless in our society"

Mrs Prempeh made the commitment when she met members of the Special Mothers Project, an advocacy and awareness creation programme on Cerebral palsy issues and issues affecting families raising children with disabilities

She said the NPP was committed to the welfare of people especially the vulnerable including mothers of children with disabilities in Ghana.

Explaining the policies of the party to about 150 mothers of children with Cerebral palsy and other disabilities, Mrs Prempeh said, "I am here for a reason, I am here to help parents like you live the life you deserve "

"Everyone deserves a financially independent life," she added.

She advised the parents that they shouldn't feel ashamed of their children

Mrs Prempeh said, Dr Mahamudu Bawumia, Vice President and the flagbearer of the NPP was coming with good intentions  and urged the Special Needs parents community to vote massively for him to enable him bring his good intentions to fruition

Mrs Prempeh supported by some executives of the NPP donated sewing machines, hair dryers. Gas stoves, cloth and some money to support the parents go into income generating ventures.

Mrs Hannah Awadzi, Executive Director of the Special Mothers Project expressed her appreciation to the NPP for opening their gates to listen to the concerns of Special needs parents.

She urged them to involve parents in policy formulation to ensure that their needs were met.

Mrs Awadzi also urged the NPP to pay attention to the Caregiver industry and create programmes that will support Special needs parents with caregivers even at the household level.

Physiotherapy services are covered by the NHIS - CEO

 Cerebral Palsy treatments like physiotherapy is fully covered by the National Health Insurance Scheme (NHIS) benefit package in credentialled Health facilities.

Dr Da Costa Aboagye, the Chief Executive Office of the NHIS announced this at the fund raiser organised by the Rotary Club of Teshie-Nungua in support of a project dubbed “Okamafo” that seeks to support persons with Cerebral palsy, Mental health issues and hypertension.

Dr Aboagye in a speech read for him by Mr. Francis Oti Frempong, Director, Membership and Regional Operations, said the NHIA as part of its operations is ready to partner the Rotary Club to register and renew the cards of poor and vulnerable groups for free, however, these people should be under certified or accredited homes or institutions.

“The NHIS seeks to ensure the provision of quality and affordable healthcare through a social Insurance,” he added

Dr Aboagye said Ghana has over the years seen a lot of cases on cerebral palsy, hypertension and mental health

The cases of hypertension were reported as 600,000persons in 2022 with a lot of people not been diagnosed out there and pointed out that hypertension diagnosis treatment and management is fully covered under the NHIS.

On cerebral Palsy, he said a total of 1 in child per 300 births were diagnosed of cerebral palsy as per the 2023 report from the Ghana Health service.  

“Although there is lack of reliable data regarding the prevalence of mental and neurological disorders in Ghana, the WHO estimates that approximately 13% of the Ghanaian population suffer from mental disorders of which 3% suffer from severe disorder and the other 10% suffer from moderate to mild mental disorders.”

He said the statistics were scary and there was the need to treat them with all the needed seriousness”

Dr Aboagye said the successful launch of the Annual Health Checker which is a bold step to offer every Ghanaian the opportunity to visit a health provider for to be checked for conditions like hypertension, diabetes amongst other non communicable diseases as a means of preventive health and the opportunity for early detection and treatment.

Mental health is also a critical national issue which is currently receiving attention ad said the mental Health bill is currently going through actuarial studies to fully ascertain its inclusion on the benefit package

He commended the Rotary club for the pivotal role they have played over the years played  in the Ghanaian economy by providing support in various sectors such as health, education, infrastructure, peace building, environmental protection community development and child health amongst others.

The Okamafo project by the Rotary club of Accra-Teshie Nungua is leading other clubs to champion the cause of children and persons with cerebral palsy, hypertension and mental health issues in Ghana.

Funds raised will be used to support the Mephiboseth Training Centre in Gomoa, the Special Mothers project, an advocacy platform for cerebral palsy issues and the Pantang Mental Hospital.

A quick survey on the Special Mothers project platform on the issue of physiotherapy services being free in Ghana indicated that some facilities provided the services free of charge once the person has an NHIS card while others still charged for the services.

District Assemblies urged to prioritise special needs parents in disbursing disability funds

 Mrs. Esther Mawusi Bribi, a special needs mother to child with Cerebral palsy has called on the District Assemblies to pay attention to special needs parents in the disbursement of the funds for Persons with disabilities.  

She said I have tried for the last six years to get some funds from the Assembly as a special needs mother to expand my provision shop but to no avail  

"Taking care of my 10-year-old son with Cerebral palsy is expensive and there is the need for extra support from government, however, I have never benefited from the funds given by the District Assemblies to Persons with disabilities.  

Mrs. Bribi who shared her experience with the Special Mothers Project, an advocacy platform on issues affecting families raising children with Cerebral palsy and other disabilities, said " I have sent my application to the Amasaman District Assembly on three occasions and yet I have never received a penny from them to support my son. 

She expressed the belief that there must be something wrong somewhere and wish she could understand what was going on. 

"Some of my friends special needs mothers who know people working within the Assembly have received funds, some of them even twice but I have never received any funds despite applying legitimately ", she said. 

Mrs. Bribi advised the district Assemblies to eschew nepotism and prioritise the issues of parents’ caregivers of children with disabilities. 

The government recently launched the revised guidelines for the disbursement of the district Assembly funds for Persons with disabilities.  

The revised guidelines among other things prioritise the needs of children with disabilities and their caregivers.  

Inclusivity in education shouldn’t be a mere slogan but a reality - NaCCA

 Mr. Mathew Owusu, Deputy Director General of the National Council for Curriculum and Assessment (NaCCA) has said inclusivity in education should not be a mere slogan but rather a reality.

He said the Ministry of Education has set up a Ministerial Oversight Committee that met periodically to discuss the new education curriculum and the committee is serious about the implementation of inclusive education in Ghana.

Mr. Owusu said this during a meeting of NaCCA Inclusive Education Expert Advisory Panel on the Secondary Education Reform to look at the progress on Inclusive education under the Secondary education reform.

Under the reform, NaCCA is working with stakeholders to make the new Secondary school reform friendly and suitable for learners with special education needs

Mr. Owusu said the new Senior High School (SHS) curriculum introduces some level of flexibility where learners placed in specific class can select subjects that are not in their main line of study

“For example, a science student may opt to offer a course in business management if they are also interested in learning something in business management,” he said

Mr. Owusu said under the reforms the focus is on subject selection rather than programme selection.

He called on stakeholders and the public to support persons with disabilities within the educational system since they needed everyone’s support.

Managing seizures in children with CP: is the Ghana Health Service monitoring

 They were sleeping in the night when they suddenly heard a consistent, repetitive sound coming from the child’s bed. When the mother checked, the black part of the child’s eye had all gone, she was twitching and did not respond to her surroundings. 

The mother out of panic poured cold water to revive the child but nothing happened, the child didn’t even shiver when the cold water touched her skin. 

The couple proceeded to the nearest hospital where they were told the child was convulsing, before they could do anything medically, baby was awakened and crying hysterically. 

The nurse on duty went ahead to give the child rectal diazepam, this was to help make the child relax and sleep. 

The next day, the doctor requested for some laboratory test, they included a malaria test, a full blood count, urine test. 

When the test results came, they noticed she had malaria parasites, so they went ahead and treated her for Malaria. 

The child was two years old when she experienced her first seizure. Little did the family know that there was more to come. 

For the purposes of this article, we choose the name Ama for the child. Ama lived with a condition called Cerebral palsy. 

Cerebral palsy is a neurological condition that affects the movement and sometimes the speech of children.  It has been identified as the number one cause of disability in childhood. 

In a space of one month, Ama had seizure again, this time the family decided to take her to a bigger hospital for proper investigation into what was happening to her. She had never experienced a seizure in her first two years of life, why now, was some of the questions running through the mind of the mother. 

At the bigger hospital, one doctor, without any diagnostic test, prescribed a medication call phenytoin, according to the doctor, that was going to stop the seizures, she told the parents to give it for 30 days and come back to see her. 

After 30 days of the medication, the parents stopped, based on the doctor’s instructions but they did not brace themselves up for what was to come, they noticed physical changed in Ama’s face, her eyes had sunken, especially her left eye and she experienced frequent twitches. 

This made them decide to go back to the hospital to see the particular doctor, it was at that point that the doctor said, I will have you do an MRI to know whether we continue the medication of not. 

The doctor’s responses that day didn’t go down well with Ama’s mother, so she decided to go and read further of the prescribed medication given earlier by the doctor and the side effects of the medication shocked her. 

Listed as a side effect of this medication included the sunken eyes and other horrible symptom that no parent would like the child to experience. 

Seizures are sudden, uncontrolled electrical disturbance in the brain which can cause changes in behavior, movements, feelings, and consciousness. 

In Ghana when a child has a seizure it is referred to in the local parlance as “3soro aka no” the occurrences of seizures are usually spiritualised. 

Ama’s mother made a decision not to put her child on seizure medications even though a lot of the medics she came across advised her otherwise. 

She said that at one time when Ama had just recovered from a seizure, she met a doctor who said, “oh your child has cerebral palsy and she is having seizures, give her Keppra” (Keppra is one of the seizure medications) 

No tests were done to know what was really causing the seizures because most doctors believe that once a child has Cerebral Palsy, seizures are a given. 

I will refer to Ama’s mother as Adwoa for the purposes of this article. Adwoa said she refused to put her child on any seizure medication and got the bashing for it from medical doctors and a lot of health workers alike. 

Adwoa however was relentless and boldly told the medical doctors who suggested medication that she will not give medication without any justification, besides she said she has seen so many parents whose children has been on medication for 10, 20 or more years and still experience seizures. 

She said giving the “dangerous side effects of some of these medications, I would rather stay away from it, rather than give the medication and still deal with the seizures.” 

Adwoa had an opportunity to see a neurologist with her daughter in the United States of America, there, the doctor requested for an EEG (electroencephalogram). 

An electroencephalogram (EEG) is a test that measures electrical activity in the brain. This test also is called an EEG. The test uses small, metal discs called electrodes that attach to the scalp. Brain cells communicate via electrical impulses, and this activity shows up as wavy lines on an EEG recording. Brain cells are active all the time, even during sleep. 

An EEG is one of the main tests to help diagnose epilepsy. An EEG also can play a role in diagnosing other brain conditions. 

Adwoa said to her surprise, she was told that there were no seizures happening in her daughter’s brain. Her child did not require any medication. 

According to the Neurologist, what happened to her child which gets her muscles stiffened was called dystonia. Dystonia is an unintentional sustained muscle contractions leading to abnormal postures. 

He went further to explain that a part of the brain called basal ganglia, a group of brain structures that control movements, decision making, reward and addition  is usually the part where there is injury and thus a child with cerebral palsy would have his or her muscles contract in an unusual way. 

The Neurologist also said that there were medications such as Baclofen which was used to relax the muscles but gave her the option is she wanted to use the medication or try other natural means to help her child’s muscles relax. 

“So, my child did not need seizure medications after all,” Adwoa said,  

Many children with cerebral palsy in Ghana are put on seizure medications without any thorough test done, they are on medication for the fact that they have cerebral palsy and children with cerebral palsy are prone to seizures. 

Most parents who refuse the doctors suggestions to put their children on such medications are scorned. 

One parent who shared her experience on the Special Mothers Project WhatsApp platform (An advocacy and a parent support group) said her child is on about 10 different medications. 

She said, “if my daughter has seizures five times a week, for five times a week, I am required to do Malaria, Full Blood Count, Urine, stool and sometimes Meningitis test, most of the test results come out negative.” 

She said the doctors don’t consider that I sometimes use the money that we are supposed to use to feed as a family to do these laboratory test which always comes out negative. 

At the last count, on the Special Mothers Platform over 20 parents have lost their children and most of the time, when asked what happened, they say, “oh the child had a seizure and was in the hospital for a number of days and then he/she gave up. 

One parent said she believes that there may be underlying causes to the occurrences in a child with cerebral palsy, but it seems there has been no research to ascertain that. 

“It could be that the child has Malaria, an infection somewhere, perhaps Ear infection, pain somewhere but no one checks that,” she continued that for instance if my child is sick, it takes me a long time to know that the child is sick, sometimes, I get to know my child is sick only when he has a seizure because unlike a regular child, my child is not able to say when he is in pain. 

She believes that a lot of children with cerebral palsy have lost their lives due to a doctor’s false assumption and ask, “Is the Ghana Health Service monitoring this?”