(The short version of last month's blog posts)
Parents make decisions about or for their children every day. But parents of kids with special needs often make decisions about their children’s treatment and education long after other kids are well down the road of self-determination. Those decisions, therefore, can have far-reaching effects on a child’s quality of life.
Parents should give some thought to how they make decisions and whether they bring hazardous attitudes or fallacious thinking to the process. With that awareness, these six guideposts can help parents make thoughtful and ethical decisions – and create the best chance for success.
Guidepost 1 – The quality of information affects your decision making
Know what resources are available to you and how to evaluate them. You have rights and responsibilities in gathering and evaluating information – exercise them, because getting the most robust information is the foundation for every other guidepost.
Guidepost 2 -- People’s skills and expertise effects decisions and quality of life
If you know the ethical guidelines for the professionals in your child's life, it helps you recognize if a treatment protocol or interaction is on the edge.
Guidepost 3 – Good decisions depend on the quality of social interactions
When the professionals speak with you, they will use accurate terms and descriptions and the intent and impact of their words will be clear and effective. We parents have responsibility to be an effective member of the entire caregiving team -- and, to the best of our ability, solve problems in a positive way.
Guidepost 4 -- Family preservation will affect quality life
Most of us are dealing with something that lasts a lifetime, not a few years. Decisions need to keep in mind that this is about the rest of your life, your child's life, and your family's life.
Guidepost 5 -- Treatment procedure selection will affect quality of life
A treatment choice should have the most constructive, and least restrictive, impact on your child's life. Make sure you are thinking long-term, with whole-life considerations. Therapists don't always think 20 years down the road, the way we parents do.
Guidepost 6 -- Ethical treatment decisions are readily accountable
For many providers, that means "do good and take data." For parents, that means a good treatment program with a well-trained provider is going to have some measures that you can see and understand.