IF submission on the rights of older persons with disabilities
25 April 2019 // The Special Rapporteur on the rights of persons with disabilities, Ms. Catalina Devandas-Aguilar, is currently preparing a report on the rights of older persons with disabilities, which she will present at the 74th session of the United Nations General Assembly later this year. IF responded to the call to provide input, and has highlighted the fact that people born with spina bifida and hydrocephalus (SBH) who did receive timely treatment and care in the 1950s and 1960s are now among the first to reach their senior years. However, knowledge about their conditions in advanced age is lacking and coordinated care and support is mostly unavailable.
There is also a tendency to overlook that people with SBH can experience “invisible disabilities”, such as cognitive issues, chronic pain, and fatigue, as well as mental health issues, such as depression and anxiety. Older people with severe cognitive disabilities may have lost their right to exercise their legal capacity or decision making at a younger age already. They should be protected against institutionalisation and abuse, once their legal guardians pass away.
The ageing process and associated changes also may have a greater impact on people with lifelong disabilities. This so called “accelerated ageing” places adults born with SBH at risk of premature death, before even reaching retirement age. More research is needed to better understand the late-onset secondary conditions associated with SBH and the longitudinal effects of childhood procedures.