Uganda has some good policies and laws on disability, but many are still wanting.
Even where policy and legislation are conducive to the creation of an enabling environment for disabled persons, implementation is often a problem. The National Union of Disabled Persons of Uganda (Nudipu) has partnered with The Observer to compare policy and practice. In the first dispatch of a 10-part series, Shifa Mwesigye looks at Uganda's Health Sector Strategic Plan III
Hamida Namumbejja crawls on her four limbs into the house and her son Moses Gudion follows her, crying for attention. The light - skinned 28-year-old sits down and starts drawing lines on the floor as she greets the visitors. She is smart and clean, her hair well - kempt and her outlook carefully maintained. One-year-old Gudion slumps down on her lap and continues to cry as he fidgets with Namumbejja's blouse in an attempt to serve himself his meal - breast milk.
He attempts to pull the buttons off and refuses to calm down, until Namumbejja relents and gives him what he wants. Namumbejja is physically handicapped, both her legs are inert. Delivering Gudion nearly killed her right thigh and hip because Namumbejja spent four days in labour at Mulago hospital's Ward 5B. Normally the physically handicapped deliver by caesarean section. But when Namumbejja arrived at the hospital at 2am on March 5, 2010, she was in pain.
The midwife told her she would be able to deliver the baby. But after two days in labour with no progress, she says a nurse informed her that she was to be taken to the theatre and be delivered by caesarean surgery.
"They wanted Shs 70,000 to do the operation; we did not have the money. I begged the nurse to help me because I was in so much pain but she refused, I didn't know what to do," Namumbejja says.
After another two days, her partner, who makes charcoal stoves for a living, mobilised the money and Namumbejja was wheeled into the theatre were her son was born. She says her son was too tired and spent another four days in the incubator before they were sent home.
"When the nurse came back to inject me, I told her I could not sit up because my thigh was paralysed, but she thought I was just being lazy. I spent eight months in physiotherapy at Katalemwa Cheshire Home and CoRSU (Comprehensive Rehabilitation Services in Uganda) to get motion in my thigh," Namumbejja says.
Such mismanagement of persons with disabilities at health centres keeps human rights activists awake, as they wonder why government cannot plan an all encompassing health care system that includes the needs of the PWDs. One may argue that government has done its part and taken care of PWDs by ensuring access to health care for every Ugandan without segregation.
Uganda ratified the UN Convention on the Rights of Persons with Disabilities in 2010. In Article 25, the convention obliges Uganda to provide the highest attainable standards of health for persons with disabilities, prevent discrimination on the grounds of disability and provide care on the basis of free and informed consent of the person with disability.
Uganda is also mandated to promote ethical standards of practice by health workers in the public and private sectors and provide gender-sensitive services, including information on reproduction and family planning in accessible formats to mothers like Namumbejja without forcing them to use contraceptives. Article 26 notes that states shall train personnel in the health sector in multidisciplinary assessment of individual needs and strengths of people with disabilities.
The Health Sector Strategic Plan III, which was designed last year, states that 300,000 people in Uganda have hearing impairments while 250,000 are blind, the causes of which are largely preventable. The policy states that it will work towards improving access to health services of people with disabilities by rehabilitating health facilities to make them accessible to people with various forms of disabilities like Namumbejja.
The policy states that government will develop and disseminate a protocol for provision of services to people with disabilities and train health workers on control, prevention and treatment of injuries and disabilities. Government targets to reduce hearing impairment from 8% to 6%, reduce visual impairment from an estimated 0.8% to 0.7%, provide assistive devices to 80% of PWDs who need them by 2015 and educate 80% of Ugandans on disability prevention and rehabilitation.
Edson Ngirabakunzi, the executive director of the National Union of Disabled Persons of Uganda (Nudipu), says Uganda's policies and laws do not clearly address disableds' issues but only skirt around them. While disabled persons may have access to health centres, when they get there they are discriminated against directly and indirectly.
Most health centres including referral hospitals are not accessible to disabled persons as they do not have ramps or elevators.
"Before they even see a doctor, they already feel unwelcome. How will a deaf person get information from a medical worker talking to a person who does not hear? There are no sign language interpreters in hospitals. Medical curriculum doesn't address issues of disability," Ngirabakunzi says.
He says the policies do not take into account blind people when providing drugs to them.
"How will a blind person know what drug they are taking when they are not brailled? Health information is not provided in braille, so they miss out. A deaf and blind person will easily take the wrong drug if they don't have someone to assist them," Ngirabakunzi says.
When disabled mothers like Namumbejja go to deliver, they are asked to climb delivery beds they obviously cannot reach. Nurses ask them why they even bother to get pregnant to add onto their 'burden' yet it is a human right to have children.
Ronald Kasule, another physically handicapped person, says disabled persons are not provided with sexual and reproductive health information and condoms because doctors assume they are or should not be sexually active. Yet disabled women are raped or abandoned by their partners when they get pregnant.
Take mental health, for example; it contributes 13% to the national disease burden. In 2009, Butabika hospital, the only referral hospital for mental health, handled 2,707 patients, with an additional 334 readmissions. Data from supervision reports shows that about 75% of attendances at mental health clinics have some form of neurological problem, commonly epilepsy, with cases of dementia on the increase especially among persons living with HIV/Aids.
So far, seven Regional Mental Health Units have been constructed in Arua, Soroti, Jinja, Mbale, Mbarara, Kabale, and Masaka, with expansions both in terms of infrastructure and human recourses. Julius Kayiira, the executive director at Mental Health Uganda, says care for mentally handicapped people has improved but the implementation of mental health programmes is hampered by inadequate staffing, inadequate resource allocation and the lack of mental health drugs on the local market.
The country has 32 psychiatric doctors and 227 psychiatric clinical officers who are not sufficient for 34 million people. Richard Ecamayi, who has battled mental illness for 16 years, says when drugs run out in Arua referral hospital, it is expensive for him to buy them yet he has to move to Kampala to get a refill. Kayiira says the 1964 Uganda Mental Treatment Act looks at people with mental illness as criminals, dangerous to society, that need no protection, a people condemned to lifelong unproductive life.
The law leaves the patient at the mercy of his or her doctor and with no chances of intervention of other caregivers or peers in the decision making process which is quite unacceptable in modern mental health care as many pertinent decisions are made in the process. He says the law is insensitive to human rights in general and health rights. It criminalises mental illness and calls mentally ill people as persons of unsound mind, a derogatory discriminatory name.
"Community mental health is very weak, follow- up on treatment is lacking. Treatment of people who are mentally handicapped starts in hospitals where doctors dish out drugs yet it should start at community level".
What he means is that the government needs to set up a health care system that identifies people who need help. People in communities should be sensitised about mental health in order to identify and offer help to people who are mentally ill instead of segregating them.
Ngirabakunzi says that when drawing plans for PWDs, the government should involve them at the planning stage to identify issues of disabled persons and prioritise them. By working with them, solutions suggested by disabled persons will work.
"We are saying every policy, programme and activity must address the issues of disabled persons. Don't create a separate hospital but remove barriers that stop disabled people from accessing health services. If they are inclusive in society, life becomes better for everyone," Ngirabakunzi says.
This Observer feature was prepared with support from the National Union of Disabled Persons of Uganda (NUDIPU).