"I am a person with albinism who receives money from the governments disability grant, but I do not collect it myself. The money is not being utilised by myself. I only get part of the money that is not enough to take care of myself," he said.
"We found most people in really bad condition, especially in the Kavango region. They have no access to disability grants because they have no identity documents, while others claim that health facilities do not really take them seriously,"
Ndinomupya said it is worrisome that most of the people have sores and spots on their skins, which could be avoided if they receive the right treatment. He said some travel to Windhoek for treatment and are prescribed the right medicine, but it can only be found in private pharmacies and it is very expensive.
"We helped some access treatment in Windhoek last month and the medicine that was prescribed cost over N$1 000. These are people with severe cases. One person had an operation and is also receiving treatment that costs over N$12 000. We are willing to help where necessary, but we need the private sector to come on board and help us," he said.
The association spoke with 462 people living with albinism who participated in the discussions and shared their concerns. Ndinomupya says serious steps will be taken against parents and families who deprive their children and family members of disability grants by not getting identity documents for them.
"Make sure that your child gets a birth certificate immediately after birth. If you still have someone in the family without one, start applying for it immediately. We need to help all people with albinism because there is no reason for them to develop sores that could lead to skin cancer. This is another form of abuse," he said.
He also addressed problems with discrimination & abuse.
He further noted that parents, especially in rural areas, should understand that people living with albinism must be kept out of the harsh sun and urged parents to stop sending them out in the field to herd cattle, especially when they have no protective hats, cream and glasses.
He urge community members that family members who misuse the disability grants, will be dealt with he and urges community members to report such cases.
The association is planning to visit other regions soon and is appealing to the public to assist with funds to make the trips possible, and especially to help in buying protective material.
Ndinomupya urged people living with albinism who are facing challenges to contact him on 0811456577.