The Right to Health

1. The Right to Health “For all of us” – Yeah Right

2. Right to Health “There is a basic fundamental human right called the right to the highest attainable standard of health. Health promotion falls within that human right. States and others have legally binding obligations to engage in health promotion.” Paul Hunt

3. “200 million people worldwide with intellectual disabilities experience widespread violations of their rights that dehumanize them, denying them respect for their dignity, their individuality, even their right to life itself.” ~ UN Secretary General Ban Ki-moon 2011 3

4. The most vulnerable and yet • No public outcry. Little data collected. • Findings of “systemic abuse” requiring “urgent action” fall on deaf ears. • Result of public inquires and other evidence of “systemic neglect” are ignored by states everywhere of all political colours • “History teaches us that when people are invisible, stigmatised and demonised widespread human rights abuse follows.”- Paul Hunt

5. Sport and volunteer health professionals step in when the State fails people! Special Olympics has 4 million athletes and has become the largest global public health organization dedicated to working with and for people with intellectual disabilities Special Olympics Healthy Athletes program has offered health services and information to athletes in dire need because the athletes Right to Health has been ignored even in New Zealand. It has conducted more than 1.2 million free health screenings in more than 100 countries and trained over 120,000 health professionals. Those 120,000 health professionals know how realise the right to health for people with intellectual disabilities.

6. Profound Health Disparities Findings from past four Special Olympics World Games (average age=25) 6

7. Routinely Excluded from Global Development priorities • WHO / World Report on Disability – limited data collected • Convention on the Rights of People with Disabilities – ratified but little action around the world • Clinton Global Initiative member commitments – priority focus on other populations • Development Organizations: CARE International, World Vision, Plan International, Catholic Relief Services, UNICEF, etc, • “The quality and scope of population statistics on intellectual disability is problematic throughout the world. Rich and poor nations alike fall to monitor intellectual disability with any degree of rigor or depth.” • ~ Glen Fujiura, University of Illinois Chicago

8. WHO 2011 “World Report on Disability” • Little data on intellectual disability • “All countries need to work towards removing barriers and making existing health systems more inclusive and accessible to people with disabilities. Strategies to ensure people with disability can attain their highest standard of health need to include: Financial measures to improve coverage and affordability; measures to improve service delivery including training health care personnel; measures to empower people with disabilities to improve their own health and measures to improve research and data to monitor, evaluate and strengthen health systems.” • Strong recommendation about the importance of targeted intervention for people with intellectual disability alongside their inclusion in general health services. • Noted that targeted interventions helped reduce inequalities and meet the specific needs of people with intellectual disability • Noted that health promotion efforts targeted on people with intellectual disability can have a substantial impact on improving lifestyle behaviors, increasing quality of life and reducing medical costs.

9. 2003 NZ National Health Committee Report • “The systemic neglect of the health needs of adults with intellectual disability be addressed by the Minister of Health and Minister for Disability Issues directing the Ministry of Health to ensure that primary health care providers are aware of the health needs of adults with an intellectual disability and have clearly developed policies for access; comprehensive health assessment tools for adults with an intellectual disability; appropriate staff education including peer review processes; health promotion material is produced and directed towards and accessible to this population; prescribing practices are consistent with best practice guidelines.” – To Have an Ordinary Life report

10. “First they will ignore you” • There has been no direction by Ministers to the Ministry of Health despite IHC and Special Olympics demanding the NHC recommendations be implemented and providing ongoing evidence of “systemic neglect”. • Ministry of Health did not respond at all until 2011and then only to research the already well known. • Two New Zealand Reports produced in 2011. • In June 2011 a Ministry of Health report into “The Health of Children and Young People with Chronic Conditions and Disabilities in New Zealand” reported: While high quality evidence is lacking there is nevertheless sufficient information to direct further initiatives towards the areas of greatest need. Such areas include access to respite care, continuity and coordination between services and the adequate resourcing of caregivers looking after children and young people with disabilities. • In December 2011 another Ministry of Health report found “For all indicators examined in this report, people with intellectual disability were more disadvantaged, in terms of their health and life expectancy, compared to people without intellectual disability. The group with intellectual disability experienced higher rates of specific health conditions and they used health services more (apart from preventative screening services). • Much of the disadvantage could have been addressed by the tools such as screening programs and accessible health promotion that the NHC had asked Ministers to direct the Ministry of Health to provide in 2003 and that IHC and Special Olympics continue to campaign for since 2003. • The Ministry is now developing another report on “health strategies that work”!! • There is something very wrong with how we are developing policy and practice in New Zealand when systemic neglect of the health needs of the most vulnerable New Zealanders is ignored year on year by the experts and people with power while well known pragmatic solutions to the neglect are ignored. • We do need better data to make better decisions. • We need the State to act on the data it has as the solutions are well known.

11. New Zealand Health Ministry’s 2011 research confirmed much of what the Ministry had been told over many years about the health of New Zealanders with an intellectual disability • Women’s life expectancy is 23 years less than the general population of New Zealanders. • Men’s life expectancy is 18 years less than the general population of New Zealanders. • 1.5 times more likely to “receive care and treatment” for • one or more of six selected chronic health conditions (nearly a third of people with intellectual disability, 31.5 percent, had care or treatment for one or more of these conditions) • chronic respiratory disease (22.2 percent had care or treatment for chronic respiratory disease) • cancer • 2 times as likely to “receive care and treatment” for • coronary heart disease • Diabetes • Injury in a public hospital • Mood disorder • 3 times more likely to “receive care or treatment” for any type of mental disorder • 4 times more likely to “receive morbid obesity treatment” in a public hospital • 10 times more likely to “receive care or treatment” for dementia. • 15 times more likely to “receive dental treatment” in a public hospital • 17 times more likely to “receive care or treatment” for a psychotic mental disorder • 30 times more likely to be “getting care or treatment” for epilepsy

12. Together we can fix this • “We need to focus on the very extensive common ground between health workers and human rights workers. Because in effect health workers are human rights workers.”- Paul Hunt • We need to focus on the most marginalized and vulnerable including people with intellectual disability. • We need to accept the fact that diversity of minds is a strength just like other forms of diversity and focus on the ability of every person not disability.