MEB Special Children's Home opens on 1st January

 A facility that will serve as a home away from home for children with special needs has been established in Apam in the Central Region  to support families raising children with special needs

The facility which will operate as a residential as well as a day care facility for all children especially children with special needs including those with severe forms of cerebral palsy .

It will house the children, feed  and provide care and educational needs at an affordable rate

Madam Mercy Boadu, Founder and Chief Executive of MEB Special Children’s home said: “I come into contact with a lot of children with special needs who are usually neglected because the parents or care givers do not see any bright future for them.”

She said MEB Special Children’s Home will serve as a home away from home for especially children with special needs, however regular children are also welcome.

“We will provide an Individualised educational plan for each child and work closely with the parents to enure that we achieve realistic targets for the children,” she added

Madam Boadu said MEB Special Children’s Home hopes to work with the children to help them become meaningful citizens of Ghana.

“I will train the children as I will train my own children,” she said.

Madam Boadu is a teacher by profession, a head teacher at a basic school in Apam and a mother of a child with cerebral palsy.

Parliament should be a place of refuge for persons with disabilities – Speaker

 The Speaker of Parliament, Prof.Mike Aaron Ocquaye has said that parliament should be a place of refuge for persons with disabilities and the less priviledged.

He said every group of persons in Ghana have a representive in parliament and called on corporate organizations and civil society organizations to embrace  persons with disabilities and make them more comfortable since disability can happen to anyone

Prof. Ocquaye said this when Parliament hosted the Eugenuis Foundation, an organization that cares for the less priviledged in society.

The Speaker of Parliament hosted the Foundation as his contribution to support them ahead of a concert scheduled for 30^th of December for persons with disabilities.

The Concert dubbed “Save a Soul Concert” is on the theme :”Disability is not inability” and will feature groups like the  Star Light Band, a musical group made up of people with visual impairment as well as Minister Isaiah ,  a wheelchair users who leads in worship

Prof. Ocquaye said : “Lets have more of less priviledged persons visit parliament to interact with us” saying “I hope that people will emulate this gesture and even improve upon it.

Members of parliament including the speaker danced and sung along to melodious tunes from the Voices of Democracy choir

Participants at the programme included persons who are visually impaired and mothers of children with cerebral palsy

The Speaker also donated items, including bags of rice, oil, tin fish, diapers and wipes as well as cash amount to participants as his Christmas gift

Mr Eugene Danso, Founder of Eugenuis Foundation in his message of appreciation said the group will like to call on the Speaker of Parliament to be an ambassador for persons with disabilities and help in ensuring that their rights were respected.

Understanding The Special Mothers Project

Stakeholders agree to form alliance to pursue Inclusive Education

A number of Civil Society Organizations and non governmental organizations have joined forced to ensure the effective implementation of the Inclusive Education policy

The Organizations coordinated by the National Resource Centre for Children with Disabilities (NRCCD)  with support from UNESCO, Ghana, organized a forum as part of activities to celebrate the International Day for Persons with Disabities

For its first mandate the alliance is going to ensure the creation of 10 model inclusive schools in  Ghana.

Mr Paul Anoma-Kodieh, Chairman of the National Resource Centre for Children with Disabilities said the schools will be an example of what an inclusive school should be.

The model schools will welcome all children, children with Autism, Cerebral Palsy, Children who are visually impaired, deaf and all kind of disabilities will be put together to be schooled.

As part of the alliance, the stakeholders held a forum on the theme: Dialoguing to Improve Outcomes where they discussed  how to make inclusive education practical

Inclusive education is an educational system that provides opportunity to all children to be educated irrespective of their disabilities

Mr Selassie Sikanku, a person who is visually impaired who shared his experience as a person who had gone through inclusive education said inclusive education helps to build strong bonds and netwroks.

“I made great friends from De Youngsters School who are still very close friends to date, even my best man for my wedding two years ago was a friend from De Youngsters School,...Inclusive education helps widen your netwroks.”

Mrs Hannah Awadzi, Founder and Executive Director of the Special Mothers Project, an advocacy and awareness creation programme on cerebral palsy said educating a child with disability in Ghana is very expensive.

“parents pay three times more than education an average child, we pay for care givers, mobility devices and many more,”

Mrs Awadzi said Inclusive education is possible, what is left is our willingness to do it

Mr Daniel Ofosu, Acting Chief Executive Officer of the Young Men Christian Association (YMCA) pledged YMCA’s committment to inclusive education, saying, “YMCA is offering its facilities to be used for the training of teachers, volunteers, parents and resource person.

The National Development Planning Commission that hosted the forum pledged its comiitment to inclusion in society.

Other organizations that pledged their committment includes, the Special Education Division, Tech Era, Stepping Stones Foundation, Presbyterian Inclusive Child Development, African Rights Initiative, and over 16 other organizations

Special Mothers Project report for 2018

On November 24th 2018, The Special Mothers Project ended the first phase of its advocacy and awareness creation campaign.

The first phase focused on advocacy through information gathering
Since the project started The Special Mothers Project has gathered information from about 500 parents mostly mothers across the whole country.

Information was gathered through the creation and use of a Whatsapp platform where parents share experiences and information, via social media on our Facebook page and our other social media platforms, through our quarterly meetings, through individuals calling directly to get information and individuals who follow up on our radio and TV appearances

Mrs Hannah Awadzi, Founder and Executive Director of The Special Mothers Project said “when I started the advocacy programme, I did not want it to focus on just me and my issues, I wanted to ascertain whether the issues or challenges I faced cut across, if not I could learn from other parents on how they have survived “

Over the years, the major issues I have identified as the major need areas include :Access to education, the lack of safe facilities where the children can be accepted for staying while parents go to work, access to information, access to general services like health care, socialization, access to professional counseling, access to peer support, access to mobility devices, inability of the parents especially mothers to work, lack of a social workforce that can support families at the household level, lack of affordable support services, lack of social support systems among others. It must be noted that all these lead to stigmatization.

The year 2018 presented The Special Mothers Project with a lot to learn in our advocacy work so I will describe 2018 as a major learning curve for the project.
We learnt among other things to stay focused on our advocacy campaign with the aim of achieving for parents or families raising children with Cerebral palsy a favorable policy statement that will enhance their lives

From our experience this year, the Special Mothers Project advocacy campaign is going to focus on enhancing the lives of families raising children with Cerebral palsy, through the provision of professional counseling services, creating a platform for parents to network and share experiences and facilitating the creation of support services and systems

Our advocacy will continue to be media based using both social media platforms and mainstream media to talk about Cerebral palsy, start conversations around various themes on Cerebral palsy and to promote Inclusion for children with Cerebral palsy.

OUR ACTIVITIES

For Year 2018, the special Mothers Project provided services for over 100 families raising children with Cerebral palsy and occasionally for parents raising children with other disabilities.
Most of the services were in the form of providing information on services available or support systems available for families in Ghana

The Project met parents every quarter, so we had meetings in January, May, August and November, all these meetings hosted resource persons who interacted and shared ideas and experiences with families.

We hosted a Research based organization Centre for Learning  and Childhood Development that had done research on children with disabilities to come and share their findings with us
We hosted Dr Abena Tannor, a Physical Rehabilitation Specialist at Komfo Anokye Teaching Hospital in Kumasi, we also hosted other researchers who were doing research on children with disabilities or Cerebral palsy specifically

For the first time, parents of children with Cerebral palsy received mobility devices from Physio Net with the support of Farm4life all UK based organizations. About 24 parents benefitted from the assessment of physiotherapist from Physio Net

The Special Mothers Project also donated mobility equipment with the support of the above mentioned organizations to five educational centres that accepts children with Cerebral palsy in their facilities.

The beneficiary schools or centres were Multikids Academy, ICRF, With God Cerebral palsy Centre, Epi Centre and Sharecare

This year we answered questionnaires of about four research groups or students who are interested in researching on children with disabilities which we find helpful because the more  research is done, the more knowledge increases and the hope of better policies that can enhance the lives of families raising children with Cerebral palsy.

In Year 2018 we also supported about two mothers to set up micro businesses, one started the sale of wigs, the other started the sale of water using the polytank. We raised funds on our Whatsapp platform to support this.

Some mothers on our platform had the opportunity to learn to make chairs and standing frames using the appropriate  paper based technology while some mothers also benefitted from free appropriate paper based chairs and standing frames

Some parents continue to access the free therapy sessions organized by Multikids Academy every Wednesday.

We adopted Kobina Acquah a 14 year old boy with a neurological disorder who had lost her mother and was left with a 90 year old grandmother to care for him. As an intervention we brought Kobina to a boarding facility in Accra, Impact Care and Rehabilitation Foundation (ICRF) where he currently stays and is being trained to acquire self help skills

The Special Mothers Project was active in the media, we were given an opportunity to speak on major radio and TV stations on Cerebral palsy issues, our Facebook page Special Mothers Project in Ghana is very vibrant, we maintained our Twitter, LinkedIn account, started a YouTube channel and an Instagram account

The Special Mothers Project has started providing professional cyber counseling services and where necessary face to face counseling for parents.

The project also organized a training seminar for persons interested in venturing into Entrepreneurship in the special needs world, the aim of the training was to facilitate the creation of support services and systems in Ghana as well as a workshop for selected media personnel

The Project participated in various special needs related programmes, among them the Special Education Needs Fair, Inclusive Education Forum by the British Council and other government programmes on disabilities.

The Special Mothers Project was one of three organizations selected by the Department for International Development (DFID) UK in Ghana to participate in the Global Disability Summit held in July 2018

The Special Mothers Project also benefitted from the benevolence of the Ghana International schools Parents Teachers Association (GISPTA) when they organized a fund raiser to support our activities

WAY FORWARD

Our theme for the year 2019 is Changing the Narrative, we will organize a Special Needs Parenting Summit in March next year on the Theme. The aim is to change how society see parents or families raising children with disabilities

In 2019 we will be creating awareness and doing advocacy through information sharing, we will share the information gathered through the organization of workshops, information seminars and presentations for various stakeholders groups

We also want to continue to empower especially mothers to desist from exploiting their situations but to rather look for opportunities to help themselves and help others by being creative and taking the lead in the creation of support services and systems

In 2019, we will continue with advocacy, we hope to organize seminars and workshops and training sessions for various stakeholders including staff the Department of social welfare, the National Commission for Civic Education, students studying rehabilitation, medical and health professionals and students, parents and other interested groups

We realize that awareness creation is key and will continue to create awareness through the media and with the programmes we organize. The project wish for a consistent air time on radio to discuss issues such as special needs parenting, Inclusive Education, policy framework and use that as an opportunity for parents to share their peculiar stories with the aim of influencing policy decisions

We will also welcome any platform that gives us an opportunity to create awareness, start conversations and make policy suggestions and proposals on Cerebral palsy

In 2019, the Special Mothers Project hopes to start a centre that focuses on promoting inclusion especially among children aged five years and below through recreation. The centre will provide the counseling services to parents, facilitates the creation of support services and systems, provide a platform for networking among parents via the programmes we organize and engage in media advocacy.

CHALLENGES

Some of the challenges we face is parents reluctance to share their stories through the media, many will usually say, they are not comfortable and thus “leave issues to God “

Some parents on the other hand exploit their situation and always present a very pitiful side of their stories with the hope of getting handouts or donations from the public. Usually such parents resist any communication about policy change by simply saying it’s impossible

Funding remains a big challenge, we pay for space for our meetings, we refresh members and participants that attends our meetings, fuel and transportation cost is huge, most of our meetings and activities we give a live Facebook update and later YouTube and the cost of Internet data keeps increasing. we need a budget for our media activities and all these is only achieved if parents or some philanthropist come to our aid.

Funding is the biggest hindrance to executing our advocacy programmes.

ACKNOWLEDGEMENT
We can never thank the media enough for the tremendous support we enjoy from them, the Ghana News Agency, the Finder Newspaper, Daily Graphic, Ghanaian Times, Multimedia Group, EIB Media Network, Public Agenda Newspaper, Media General, Modern Ghana online, Okay FM, may I at this point mention Mr Elvis Darko, Editor of the Finder Newspaper, who has given us awesome support from the beginning. TV3, GBC radio and TV, TV Africa, Otec FM

We are grateful to the Shop N Save supermarkets, they provided refreshments for most of our meetings, the Heartbeat Music crew, Eugenus Foundation, the Ghana International schools PTA for choosing us to raise funds for us. Mr Ghosh Osei, he helped with IT, Mr Ebenezer Asomaning, our website designer

Ms Sylvia kissi- Appouh is the mother who initiated the move to apply for mobility equipment for the parents on the project, Bless You Sylvia. Gifty Iddrissu was very helpful during the first half of the year and I am grateful, we enjoyed the fundraising skills of Mrs Ellen Otoruku, I can not mention all the over 150 parents I engaged with this year but they all make the Special Mothers Project what is it.

Our fulfillment is to see a family raising a child with Cerebral palsy smile because they were able to access support in one way or the other for their child

Vee Agyare Nelson, Founder of Stepping Stones Foundation, another organization doing something
commendable, supported our Training Seminar

SUPPORT

We continue to count on the support of individuals and organizations to make our programmes and ideas a reality.
You may support us by donating to The Special Mothers Project, ADB, Ring Road Central Branch – 1011010126145301(Swift code ADNTGHAC) Or

GN Bank, Adentan Branch – 1024122400001 or our

Mobile money account 0549114870

Health professionals urged to stop stigmatizing children with Special Needs

Some parents of children with cerebral palsy has expressed concern about the level of stigmatization in some hospitals when handling children with special needs

Some of the parents said that stigmatization of children with special needs especially cerebral palsy starts right at the hospitals with the kind of attitudes and behaviors some health care professionals show towards the children

Mrs Alberta Hammond a mother of a child with cerebral palsy, who shared her experiences said: “all my humiliating and very painful encounters were at the hospital”

She asked: “why do some nurses and matrons insist on weighing my severely underweight child by taking off his clothes and placing him in a white bowl with his legs out in front all others, why can’t our folders have different features either by colour or by size to tell health professionals who we are and to get some level of extra care?”

Mrs Hammond said hospitals especially the public ones have really hostile environment and much more hostile to a parent of a child with cerebral palsy, explaining that “I do not always have someone going with me to the hospital and it is even very difficult to use the washrooms in the hospital even when I have the urge”

The parents shared their experiences with Dr Abena Tannor, a physical rehabilitation specialist at the Komfo Anokye Hospital prior to a training programme she is organizing for nurses on providing healthcare for children and adolescents with special needs

Mr Solomon Acquah, a father of a child with cerebral palsy said nurses and health care professionals should exercise some patience when dealing with parents of children of cerebral palsy

“Some of the nurses behave as if you the parents are the cause of the child frequent visit to the hospital when you go to the hospital frequently with seizures or infections, it makes some parents hesitate in taking their children to the hospital anytime they are sick.

Madam Olaide Babalola, a mother of a child with cerebral palsy also said health professionals usually generalize the issues that affects children with cerebral palsy, they should know that no two children with cerebral palsy are the same. They should treat each case as unique and special.

She said health professionals should also share information on the children’s diagnoses at a very early stage even if they are unsure, saying, “Once there is a high suspicion of something not right, parents should be engaged and counseled for early intervention purposes

Mrs Irene Livingstine Acquah, a Carer of a child with cerebral palsy said: “We stopped going to a particular government hospital because of the comments and sometimes the disrespect some health professionals showed towards us.

Mrs Hannah Awadzi, a mother of a child with cerebral palsy and Founder of the Special Mothers Project, an advocacy and awareness creation programme on cerebral palsy issues said, nurses and health care professional should not project their religious beliefs on parents of children with special needs.

She said: “Some of them make you feel like, you did not pray enough that is why you have a child with special needs, some sympathy comments are better not made,”

Madam Emelia Gynekel Bawa, a mother of a child with cerebral palsy, called for continuous advocacy on cerebral palsy issues, saying, “I think our noise is getting somewhere, last week my boy was admitted and I marveled at the way the health workers took keen interest in him, the nurse and the doctor was super nice to us.  I was very impressed.

Dr Abena Tannor expressed her gratitude for the concerns raise and said all the issues raised will be factored into her training programmes for health care professionals.