Ageing

4. Health

4.6. Challenges in health services

People with ID are generally frequent users of healthcare and require access to universal health services used by the non-disabled population, even when they have complex health needs and experience inequalities that contribute to their premature, and often preventable, deaths (14). 

Healthcare practitioners in universal health services often lack the knowledge, confidence and skills to recognise and manage the health issues experienced by older adults/people with ID. In hospitals, doctors and nurses lack knowledge of 'diagnostic overshooting' that means that they attribute the problems to developmental impairment. They often do not understand the person’s way of communicating and are not responsive to parents and support staff expressions (14). Watch the video below and listen to what Amanda says about her experiences (25): 

Impaired communication skills are one of the most important factors affecting assessments and procedures in connection with hospitalisation of people with ID. Communication ability has a decisive effect on both treatment processes and hospitalisation results (14). A consequence is that family and closest staff are worried about the person’s health. They may be uncertain of the health care system’s ability to provide efficient and good health treatment. Not everybody experiences lack of health competence, but one bad example is one example too much. A very tragic story in this field is the ‘Jayne and Jonathan's story (26):

There is evidence from several European countries that the number of people with ID are under-represented in hospice and palliative care services (15). One explanation can be that more of them live in group-homes that also provide healthcare. Family also plays a crucial role in supporting older adults with ID to ‘age in place’. Families face many challenges in this field:

• Caring for themselves and their child/sibling as they both age 
• Constant fear/anxiety of who will provide care for their relative when they can no longer do - a lack of planning from the local community
• Dependence on informal support and greater need for formal support
• Mutually dependent relationships 
• The effects of long-term caring

In recent years health professionals have focused on their lack of competence on people with ID. In Europe, especially in the UK, several places have developed tools that can provide better support when people with ID arrive at a hospital. One example is ‘This is my Hospital passport’, a resource for people with ID or autism who need hospital treatment. The passport is designed to help them communicate their needs to doctors, nurses and other healthcare professionals.

Despite the evidence-base, health action planning is limited. In the UK individualised health action plans (HAPs) are currently being promoted by the government. HAP set out the person’s health problems and health needs, linked with regular health checks. Although the person with ID is involved in developing and keeping the action plan, the responsibility for maintaining it and facilitating the actions required lie primarily with the person’s helper (health advocate, carer or health facilitator).

ACTIVITIES:

• Find out if the country where you live have recommendation on health checks especially for people with ID. If the answer is 'no', what can you do with it?
• Discuss with your child/sibling/client about the importance of regular health checks, and how it can be done. 
• How can you support your child/sibling/client in regular health checks?