Is your family prepared for the future? You might be one of the few that are. Children who have intellectual or developmental disabilities are living longer than ever before. While that is incredibly positive on one front, it also means that many are outliving their parents. A recent study by the University of Illinois has discovered that most parents of children with disabilities are not fully prepared for this prospect.

Let’s explore what that might mean…

The Survey Results

400 US families responded to the survey on the steps they had taken to secure the future care of their children. The ages of the children ranged from 3 to 68 and all had intellectual or developmental disabilities.

The survey recommended 11 steps to ensure the ongoing support of children when their parents were no longer there to provide care. These steps included things like establishing legal guardianship and power of attorney, as well as securing a residential placement. Of those surveyed, only 3.6% of the parents had taken all 11 steps. 32% had done some preparation, but 12% had done no preparation at all.

While this study was conducted in the USA, the same results would be found worldwide. When a parent passes away, or is no longer able to care for their child, this can cause a real crisis for the family if there are no preparations in place. It is vital to start planning for the future now and the potential for that transition of care.

So what is stopping this from happening?

The Barriers

Three of the four main barriers to making the necessary preparations are no surprise. They are noted as lack of funds, lack of time, and stress. But most concerning was the lack of information on available residential services. While the first responsibility of care remains with the parent or guardian, there also needs to be support from the community.

Parents need to be aware of their options. They need to be able to find what services are available to them, and how they can assist. This is an issue that is a lot wider than the community. These issues rest with the government. Are there enough of these services available, are they available in the places they are needed the most, and what is being done to ensure they are in place.

The Steps To Take

The first preparation step parents should take is to get advice from a trusted and knowledgeable authority. There are lawyers and attorneys that specialise in making arrangements for children with disabilities. But there is also information available at a community level too.

Making the time for preparations can be difficult when life is so hectic. Parents are often focused on the day to day of appointments, schooling, therapy, and everything else that goes along with having a family. They don’t always mean to bury their head in the sand, but simply run out of hours in the day to fit anything else in.

It is important to remember that life can change in the blink of an eye. Having those preparations in place now could save a lot of stress and worry in the future.

Also, don’t forget to include the child in the preparations. They should have some input into what their living situation would be. Where they would live, who they would live with, or if they will live independently with assistance. This is a big scary topic, so it is best to discuss it informally to begin with. Then, depending on the age of your child and the situation, you can move into more in depth conversations if needed.

How you go about it is not the important thing, it is the fact that you have the preparations in place that is key.