Today two staff were working, one is on leave. There were
six children present, some others are staying out of town during the school
holidays. We had a look at the records that are kept to show the progress the
children make. Actually, the outcomes recorded are pretty remarkable. Most of
the children have severe and complex disabilities, like the little girl with severe
visual impairment, weakness and spasticity of all four limbs and minimal
ability to communicate in any way. She can now stand using a frame for half an
hour and sit comfortably in a chair, but the biggest change is that she now
appears a calm and contented child in contrast to the girl who used to strike
and bite herself incessantly. Other gains by the children are the ability to
communicate, to feed themselves and be continent. Most impressive was the sense
of calm and purpose in the centre, where it used to feel quite stressful. Lucy and Ida sat peacefully in the outside
shelter providing therapy to contracted limbs and joints, education and play
simultaneously without any fuss, only occasionally jumping up to sprint and
retrieve an escaper. It is clear that they love their work and the children.
Adjustments are being made; some children have been
discharged for home care (we plan to visit them to check on their welfare
before we leave) and there will be more focus on helping children access
education. The system of regular visits from the physiotherapist seems to be
working well. The physio shows the staff and the families how to help the
children and administer the therapy. We can improve on the record keeping,
giving a clearer focus on the achievement of therapeutic goals.
In my experience, care for disabled children here is very
difficult to achieve for the following reasons:
·
Lack of resources generally – families’ and
helping agencies’ budgets are under strain and these children are often more
costly to care for than others.
·
Lack of appreciation of the human rights of the
disabled: though Uganda has exemplary laws about this, they often fail in
implementation as many people do not want to divert scarce resources to this.
·
Lack of expertise, the poor state of healthcare,
loss of professionals from state health services through competition from the
private sector and overseas recruitment. This leads to families wasting a lot
of their income and selling assets for ill-advised attempts at cure, while
others who could benefit from treatment cannot access it due to lack of knowledge
or finance, especially those who live far from centres of excellence.
The Ark and the disability support groups, alongside many other
indigenous and transnational organisations, can work to mitigate this, but
ultimately it comes down to political will and here we can look to raising
awareness of the issue, and empowering the political representatives of people
with disabilities to better represent their interest.
I can’t help being disturbed by what we see here, though I’m
not the one who has to live with it, but it is great to be involved with this
organisation that knows that you can’t do everything, you mustn’t do nothing
and you can do something. Sometimes by God’s grace, it’s more than you thought
it would be!
