“Open letter to the Newly NCPWD chair” Mugambi Paul

“Open letter to the NCPWD chair”
Mugambi Paul

This letter is sent to our newly Chair of the NCpwd:
Dear sir,
Kenyan persons with disabilities
want the same opportunities as everyone else in the community – somewhere to work, somewhere to live, somewhere to enjoy the company
of family and friends, the chance to follow their passions and interests. We want NCPWD that makes these things possible – not stands in their way.

Using the ideas that have been collected for the last 15 years.
I have come up with the three C’s: three useful targets to help get the NCPWD
back on track. 1. Control

Kenyan persons with disabilities must be in the driver’s seat. It is their experience and their views that must determine priorities and drive change. Choice and
control must not be undermined or restricted by poor policies and processes.
For instance, it should no longer be business as usual for the Blind and vision impaired persons to receive brailed version of vision 2030 after a decade when it was out.

No disabled representative is at the building bridge initiative! Persons with disabilities must be empowered by their experience in the NCPWD, not further disempowered
and marginalised. And above all we want good outcomes for everyone –not just those who are educated, or well-resourced or who have an advocate.

So how do we make this happen?
list of 5 items
• Quicker, simpler and easier processes. Simple and plain communication that is easy to understand, more so for persons with developmental disabilities and Deafblind etc

• More help for people, families and carers at every stage of the process including application for assistance, peer support and advocacy

• Fully functioning and fit for purpose IT system that works for both consumers and producers of disability services at the county and national levels.
participants and providers

• Focused and resourced attention on groups who need more support – such as those with complex needs, severe disabled persons, Blind and those who have never been hard.

• More staff to clear backlogs. And competent well-trained staff with the right experience and expertise
Additionally, a 51 per cent disability employment target across all levels of the NCPWD including senior leadership. Currently
just 25 per cent of the NCPWD workforce have a disability.
Furthermore, on the public service I believe more needs to be done to stop the disability community
being shut out of public sector jobs
.
The 5 % has the target did not go far enough, given the consistent decline of employees with disability
in the sector.
According to public service survey 2015 Kenya has not yet achieved even 1 % target of employment opportunities to persons with disabilities.
I opine that targets needed to be supported by a comprehensive strategy to address the “unacceptably low” employment rates of people with disability
across the APS and in mainstream employment more generally.
A Kenyan National Jobs Plan to fix systemic problems that people with disability face finding and keeping a job.

This plan would include measures to strengthen the transition of young people with disability from school into tertiary education and mainstream jobs,
and would integrate with the social security system to support people with episodic disability moving in and out of employment.
Moreover, a whole-of-government and whole-of-community approach is needed to enable employers to create meaningful, flexible and inclusive employment, make workplaces
more accessible, remove discrimination and build positive employer and community attitudes.

2. Certainty

Persons with disabilities, their families and carers want to know the NCPWD will be there for them when they need it. Those who have made applications want to know
services will be there when and how they need them. And for those who do not have an assistances, other programs and services must continue. No one should be left
without support because Kenyan government can’t get it together.
Instructively, Kenya has been on top from the global disability forums that no one should be left behind.
So how do we make this happen?
list of 5 items
• Full funding should be enshrined in the upcoming national and county budgets and persons with disabilities 2019 bill

• Active support and intervention to make sure people have a diverse range of quality services to choose from. Intervene early to prevent failure and lock
in crisis support so no-one falls through the cracks

• Independently let NCPWD become policy formulator and a facilitator instead of an implementor.
For instance, immediate action on the way NCPWD works with other systems like health, justice and transport. All levels of government must sit down and work out how to synchronize services instead of making disabled persons to suffer.

• Greater develop and resource of the Information, Linkages and Capacity Building program. This will ensure NCPWD funds the disability persons organization to further efforts of advocacy instead of fighting each other.

• New timeframes for entry into the NCPWD, plant and equipment approvals and plan reviews;

• More help for people to navigate the NCPWD and get their assistance plans into action including more support for advocacy; and

• Targeted outreach for people who require additional support such as children, people who are Blind, psychosocial support and or Culturally or
Diverse backgrounds.
list end
but also initiate or restoration of other programs and services
that support people with disability, their families and carers
list end this should be reflected in the county and national levels.

3. Community

The NCPWD was never intended to work in isolation. The gap in life outcomes between those with a disability and those without will never close without action
in all areas of life – employment, health, education and transport are all areas that need immediate action.

So how do we make this happen?
list of 3 items
• Greater attention and resourcing to the Kenyan National Disability Strategy

• Immediate action on employment, education, housing, transport and health. Targets must be set – and met.
More so the big four agenda.

• An immediate timeline for a board of trusty’s actions in issuance of
funding

I observe that All across the country persons with disabilities
, their families and carers and people who work in the sector have been holding formal and informal forums in the social media, mainstream media and public forums. events and coming together to demand
urgent change.
Obviously, many policy makers know what’s need to be fixed but they aren’t doing so.
As the chair you need to listen to us. After all, people with disability and their families know what is and what is not working when it comes to the NCPWD –
and we know how best to fix it.
Scholars and researchers have recommended
The disability persons organizations should join together with a government and work collaboratively so we can get the ncpwd working well for everyone who needs it.
This is very true in many countries.
NCPW is a body mandated to promote and protect equalization of opportunities and realization of human rights for disabled persons in Kenya to live dignified live.
as a public policy scholar, I affirm that and There is no question that when the NCPWD works it absolutely changes lives. We see its life-changing power every day. But, for too many people, the NCPWD
is not working well. It is too complex and too bureaucratic – and as a result some people are falling through the cracks while others are missing out altogether,
we know of some truly heartbreaking stories of people who are really being let down by the NCPWD. There are people with disability waiting two years
for a wheelchair, there are persons with disabilities waiting for the disability card for 7 months, there are blind persons awaiting a braille display but told to have a white cane etc
There are families pushed to breaking point without essential support for their child. There are people hospitalised as a direct result
of the stress of trying to work their way through a bureaucratic nightmare.

“Situations such as these cannot be allowed to continue. That is why, today I have written this letter. calling on the new chair to
listen to persons with disability and commit to getting the NCPWD working the way it should – the way it is mandated in respect to the UNCRPD, SDG and the Kenyan constitution.

The views expressed here are for the author and do not represent any agency or organization.
Mugambi Paul is a public policy and diversity and inclusion expert.

Autism Is My Superpower By a Guest writer. Michael R. Whary

Autism Is My Superpower
It does not matter what sixty-six percent of people do in any particular situation.
All that matters is what you do.
John Elder Robison, Look Me in the Eye
My parents were concerned because my speech was not as advanced as other children
at age two and a half and I did strange things like lining up all my toys in rows
throughout the house, spinning around in circles, and throwing tantrums. In addition,
my motors skills such as running and hand strength were delayed. I also had a lot
of trouble with balance.
My neurologist recognized the signs immediately and informed my parents that I was
autistic. My parents asked what my long-term outlook might be and they were told
that I would most likely never be independent. They were told that because of my
lack of motor skills I probably would never be able to ride a bike, motorcycle, or
drive an automobile. This news made my parents very sad as they had lost my older
brother in childbirth two years earlier.
My parents immediately enrolled me in speech and occupational therapy classes. I
don’t remember much about it, but they said I went to classes five days a week for
four years. Early on my parents believed that if they could get me enough training
that somehow I would
outgrow or no longer be autistic. As I went to classes later I noticed that almost
all of the parents believed the same thing. It wasn’t just about helping their children
fit into society. It was also about trying to hide the autism from the world. A lot
of the kids sometimes felt like Rudolph in the movie
Rudolph the Red-Nosed Reindeer
 when his dad tried to hide his red nose.
While my autism caused me to develop slower than other children in some areas it
also gave me some abilities that others didn’t have. I learned my alphabet at age
one and I could read at a fourth grade level by eighteen months. In preschool the
teacher always read a story before naptime to the class, but was so amazed at how
well I could read that I took over and was the official storyteller for my preschool.
It was easy for me to read the words on the page fluently, but I had difficulty having
a simple conversation.
My dad had been a star athlete in high school and college, but because of my delayed
motor skills I was not able to play organized sports early on. I really wanted to
follow in his footsteps because he enjoyed football so much, but it just wasn’t possible.
Instead I joined the Cub Scouts. It was so much fun, and at each meeting I learned
a new life skill, from cooking to tying knots to hiking. It was also the first time
that I spent a lot of time with neurotypical children. This was important because
I would copy how the other scouts acted and that’s how I learned to interact and
take part in organized events. All of the physical activity improved my motor skills
too.
I earned the Arrow of Light Award and the Cub Scout Super Achiever Award because
I had earned every pin that the Cub Scouts offered.
Since I had such a wonderful time in Cub Scouts I bridged over to Boy Scouts. It
was not an easy transition as Boy Scouts are “boy run.” This means that I was no
longer taking classes from patient adults, but being given orders from older scouts
who were in high school. It was difficult because I could not process what they wanted
me to do as quickly as regular developing children. I was sometimes overlooked for
leadership positions and not given a chance. I did come home very upset sometimes,
but I always remember my father saying, “If
it’s easy everyone would do it. It’s the hard that makes it great.” He always knew
what to say to motivate me. I doubled my efforts and slowly I was able to do the
jobs that were needed and in turn I was given positions of responsibility.
I believe that scouting is very good for autistic children because they learn hands-on
life skills through merit badges. An Eagle Scout must have twelve Eagle required
badges and twenty-one total merit badges to even be considered. The Eagle requirements
are very difficult. Everything from First Aid, Citizenship, Accounting, Family Planning,
and Physical Fitness are learned along the Eagle Trail. I currently have all of the
Eagle required badges and a total of forty-five merit badges. I enjoy learning new
things from the experts in the field who teach the merit badges. My favorite was
the Aviation merit badge. We went to an actual flight school and learned all about
navigation, instruments, weather conditions, and the different planes. We then got
to ride in a small plane and I even got to fly it for a little bit. It was amazing!
When I was thinking about an Eagle Scout project there were so many options to consider.
The churches all needed help with their facilities, and all of the fraternal organizations
like the Elk, Moose, and Veterans clubs had things I could have helped with, but
none of the options seemed quite right.
Then a little over a year ago I came down with a terrible fever and my mother took
me to the emergency room. The EMT who was there took my information and when they
were told I was autistic the doctor asked him to stay in case they needed to hold
me down while I got shots. I guess the doctor had experience with other children
on the spectrum. I calmly allowed them to give me the shots and the EMT and doctor
were both shocked when I didn’t put up a fight.
The EMT stayed with me and asked a lot of questions about being autistic. Then he
followed us out into the parking lot and explained why he was asking all the questions.
It seemed that his nephew had just been diagnosed with autism and he and his sister
were very upset. With a tear in his eye he told us that I was such a well-mannered
young man and in control of my surroundings, which gave him hope for his nephew’s
future. He said that I inspired him and he was so
happy that he met me.
As I thought about what he had said it came to me that maybe I could help other parents.
I could make them understand that autism is not something to be ashamed of and that
if their child is on the mid to higher end of the spectrum anything is possible.
I want parents to embrace their children for who they are and not carry the guilt
that they did something wrong. According to the CDC, one in forty-two boys in the
USA is somewhere on the autism spectrum. If I could inspire new parents who are so
devastated by the news then maybe I could make the world a better place.
Currently, I am a high school sophomore and enjoy playing the piano and the trumpet
in our marching band and jazz band. I’m also in ROTC and was honored by being inducted
into the Kitty Hawk Honor Society for members with good grades. I take advanced classes
and I am on track to graduate with honors. I currently have a 3.75 GPA. I threw shot
put and discus for my school’s track team and also ran the 100-meter dash. I will
be attending a university upon graduation. I am hoping to get accepted into the Wharton
Business School at Penn, or another Ivy League school, but if not then possibly Baldwin
Wallace University in Berea, Ohio. After graduation I would like to own my own business,
possibly in computers.
How would I define my autism? I was never considered an “Aspie” because of my diagnosis.
I use the word “autistic” because it is a word most people understand, but in the
end it is just a word. To be honest my answer may sound strange, but I am not defined
by my autism. I am Michael Whary. I cannot be defined by any set “definition.” What
I have learned is that no matter who you are or what disabilities you have to overcome
in this life if you want something badly enough anything is possible! God gave everyone
a special gift, a “superpower” if you will. Autism is mine. It has taught me to overcome
my physical, mental, and social difficulties.
Every year we celebrate my birthday with a cake and candles as most people do. When
I blow out the candles and make a wish it’s always the same, “I wish that all of
the suffering in the world would end and in so doing there would be peace on Earth.”
I thank the powers that be for giving me this life. I thank my parents for their
guidance, patience, love, and understanding. And I wish nothing but good things for
others on the autism spectrum.

The Road Map to Canaan for the disabled Kenyans after the Global summit

Global Disability Summit’s commitments need to be reflected in governments’ national policies.
The persons with disabilities in Kenya have seen a new dawn.
This is after the Kenyan government endorsed the Charter for Change during the Global Disability Summit, a “first of its kind” event organised by the UK Department
for International Development (DFID), along with the Government of Kenya and the International Disability Alliance. This is now a clarion call to the Kenyan government to ensure
that their strong stance and work on disability in international cooperation is reflected in our own national policies.
The Global Disability Summit, which took place on the 24th July in London, gathered over 700 representatives from Disabled Persons’ Organisations, Civil
Society, Governments, and the Private Sector. It aimed to mobilise new global and national commitments on disability, especially in regard to international
cooperation and development. It was preceded by the Civil Society Forum, which provided an opportunity to highlight current issues relevant to the global
disability movement and work on the realization of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) [1]
I opine that the disabled persons in Kenya have not achieved much from the 2003 ACT, draft national disability policy 2006, national action plan 2015 concluding observations 2015 made at the UNCRPD.
Despite the policies, regulations and constitutional provisions protecting persons with disabilities, marginalization and lack of voice continue to engulf the disabled person in Kenya.

Other policy makers argue that Kenya doesn’t lack good written policies but poor execution. This is also accompanied by due to slow pace of implementation and lack of capacity.
For instance, disabled musicians, sports men and women play to the second fiddle when being supported by the government.
Another example is the inaccessible government offices.
history all over the world has showed that positive change for disabled people comes when a strong and vibrant disabled people’s movement campaigns
effectively for justice. We know from experience that such change does not come from spontaneous innovation by ministers. We need development that does
not leave any disabled people – or anyone else – behind. The global summit commitments were loud and clear that the governments and development partners need to direct their energy of empowerment and strengthening the ability of disabled civil society in Kenya
this is by holding the Kenya government to account against the pledges they have made. After all Government acknowledges disability as a phenomenon that cuts across all spheres of society and which requires support from all actors.
Furthermore, the Kenyan parliamentarians with disabilities do not have any excuse of not pushing the repealing of the 2003 persons with disability act in order to aline it with the UNCRPD, the 2010 constitution, SDG and now the global summit chatter.
It is my humble submission that with the new cabinet secretary and principle secretary the Kenyan disability movement will have a disability bridge initiative in order to realize the set commitments through a tangible action plan.
Moreover, the Cabinet secretary can appoint a 5 persons task force for a period of 4 months to lay the new way of operatializing and prioritizing the disability commitments.
This can be achieved by ensuring budgeting and aligning functions to the relevant ministries and creating enabling environment for the new development partners as well as retaining the traditional partners.
. The task force can be mandated to ensure they deliver by having the public access of information which has been reviewed, assessed and published in accessible formats and on a regular basis.
This will promote transparency and accountability of the commitments made.
In addition, the plan should reflect the will of the disabled persons where they want all government and private institution to embrace disability inclusion.
The cabinet secretary can get a pull of resourceful persons from persons with disabilities.in order to enable the direct consumers who know where the shoe pinches.
“Nothing about us without us”

the CS and the principle sectretary should join the
International Development Secretary Penny Mordaunt of the UK who stated:

“It is fantastic to see such ambitious commitments made from countries and organisations from around the world at today’s Global Disability Summit.

“But, if we are going to help people with disabilities to fulfil their true potential, today cannot just be about words – it has to be about action.

“That’s why we need to hold ourselves and our partners to account and make sure these commitments produce genuinely transformative results for people with disabilities world

Paul Mugambi is a senior public policy consultant and a social discourse commentator.