The roadmap is the same
In The Sun’s recent interview with Jonathan Martinis, JD, the nationally recognized legal expert on disabilities and policy advocate begins by describing some cultural differences between the neurotypical and disabilities communities: “In the neurotypical world, we build on our strengths and overcome our weaknesses by relying on the advice or support of experts. So, if you struggle with math and filing your income taxes, you go to a certified public accountant (CPA) or download TurboTax®. Many of us consider ourselves smart for making this decision. But when an individual with a disability struggles with a task, he or she is judged and labeled for the weakness.
“Why?” asks Martinis. “We all need help making decisions and support to reach our goals. So, we all need someone to help us figure out what’s in our way and help us through. This process is a plan that can lead to selfreliance and independence.
“We hold people with disabilities to a different standard, and that culture needs to change. People need to be seen as people. The roadmap is the same; the only question is the degree of help needed” states Martinis. As the senior director for law and policy at Syracuse University’s Burton Blatt Institute and coproject director of the National Resource Center for Supported Decision-Making, Martinis recommends supported decisionmaking (or SDM, for short).
“Basically,” explains Martinis, “SDM involves getting the information you need in a way you can understand so you can make a decision.” An example of SDM is asking your doctor what she means when you don’t understand the medical jargon. “Just saying ‘May I have this in plain English please?’ is SDM. We’re able to manage our healthcare because we understand and can do what the doctor says.” This process, says Martinis, is taken away from some people without their consent, even if they have less restricting cognition issues: “The number of people with disabilities in guardianship tripled in the last 25 years. And 90 percent of them lost all their rights—despite the growth in technology and the number of available supportive programs.
“Science has proved that life can get worse when you lose your right to make choices. Forty years of study have determined that the more self-determination a person has and the more effectively the person is empowered to make choices, the better his or her life is. Self-determination equals a better life.
“Parents, I know your goal for your child is happiness, independence, and security,” assures Martinis. “I’m just offering some options to try if you’re coming up against a block of some kind; SDM may give you ways around the block. It all boils down to making a plan to reach a goal and determining what’s in the way and who can help. For people with disabilities, SDM can be a best practice because it leads to informed choice and offers some opportunities without prejudging the individual or taking away rights.”
An in-depth explanation of SDM can be found in The Right to Make Choices: Introduction to Supported Decision-Making. Written by Martinis, this publication can be downloaded from the Missouri Developmental Disabilities Council website at moddcouncil.org. Included in the publication are the steps to take to learn and support an individual’s decision-making preferences, methods, and voice. Briefly, these steps are as follows:
- Listen, and think: Talk with the person. What are his or her interests and goals? What kind of decisions does the person make now, and how? What kind of decisions does the person want to make but has trouble with?
- Identify opportunities and challenges: Ask what kind of support the person needs to make decisions and reach his or her goals? What challenges does he or she face?
- Find friends: Learn about and contact people, agencies, and organizations that can provide the supports the person needs to overcome his or her challenges.
- Coordinate support: Work with the person and his or her supporters to develop a plan for who will provide the help the person needs and how it will be provided.
- Memorialize effort: Create a written record of your plan. Written plans can help you stay organized and ensure appropriate follow-up.
Get your roadmap here! “As a parent with a child with disabilities,” says legal expert and policy advocate Jonathan Martinis, JD, “you can be so overwhelmed—you almost have to be a medical professional, education specialist, legal expert, and so many other things. You need a roadmap.”
On pages 4–6 in this newsletter are two roadmaps for parents who want to help their children become as independent as possible. Both include a parental overview and a checklist for a loved one with ASD:
- The piece on managing your own healthcare was submitted by Cory Ellen Nourie, MSS, MLSP, the transition social work coordinator for Nemours/Alfred I. duPont Hospital for Children.
- The driving checklist was researched and written by long-time Sun contributor Jen Nardo, who is also the parent of two sons, one with autism spectrum disorder (ASD).
Another guide that may serve as a roadmap is Supported Decision-Making Teams: Setting the Wheels in Motion, by Martinis and Suzanne M. Francisco, an educational advocate who has three children with disabilities and limited verbal abilities. According to Martinis, this guide has been cited as best practice because it is simple for parents to use while offering ways to find help and a worksheet to help move through the conversation with your child. Find this guide on the National Resource Center for Supported Decision-Making website, supporteddecisionmaking.org.