End-of-life discussions are difficult for everyone. But the discussions are even more challenging when individuals with intellectual and developmental disabilities are involved. If you live in Illinois and you have a loved one with special needs, you should be aware of some of the misunderstandings that surround this important subject.
A realistic picture
It is not easy to talk about death. But end-of-life conversations are inevitable. And those with developmental disabilities should not be excluded from them. Nonetheless, if you have a child with IDD, you should be aware of the following:
- People with IDD can have autonomy.
- Most people with IDD can deal with the concept of death.
- Guidance from professionals and family makes a big difference.
It is not abnormal for people with intellectual and developmental disabilities to decide on these matters. In fact, since the 1980s, there have been guides on end-of-life planning. This is why important to have a good relationship with your loved one’s physician. It is especially helpful if his physician has experience in dealing with people with disabilities.
According to researchers, about 3% of Americans have IDD conditions. However, only a small percentage of them have extreme intellectual limitations. So the average individual with IDD can deal with the concept of death. The truth is that people with these conditions have created advanced directives.
People with IDD conditions can benefit from supported-decision making (SDM). SDM involves the involvement of friends, family members, medical professionals as well as volunteers. SDM teaches people problem-solving skills. Your loved one can obtain the guidance that he needs through supported-decision making.
Tackling this difficult subject
The subject that surrounds death is sensitive and difficult. This is why the topic should be approached with patience and compassion. Now it is the time to act.