In 2012, “Adam” (not his real name) was fighting an infection in his leg and facing a tough situation.
The Protection and Advocacy Agency (P&A) in his state became involved when the state’s Attorney General’s office called. The Attorney General’s office told P&A staff that an individual with an intellectual/developmental disability—Adam—urgently needed surgery to save his life. They believed Adam’s disability was keeping him from making an informed decision about the procedure. They were considering seeking an emergency order to allow the surgery, and wanted to know if the P&A would represent Adam’s interests if such a court procedure became necessary.
P&A staff went to the hospital and met privately with Adam for about two hours. They discussed his thoughts about the surgery. Adam was able to describe the difficult situation he was in. He knew he had two options: 1) get the surgery and lose his leg; or 2) refuse the surgery and likely die from the infection he already had. He also told staff that he was fearful that the surgery might just be a continuation of the significant surgical interventions he had endured in the recent past, that recovery might be painful, and that he might not have a longer or happier life following surgery.
Once he had a chance to tell his story, a meeting was set up with the surgeon so Adam could ask questions about the surgery. The surgeon talked with Adam about his fears and gave him examples of patients in a similar situation who were better able to recover once the infected limb had been removed. After Adam had his questions answered and heard the surgeon’s opinion, he immediately replied in a clear and firm voice “When can we start?”
P&A staff called the Attorney General’s office to inform them that they had visited with Adam and had determined that, in their judgment, he currently had the ability to make an informed decision and had decided to pursue surgery after considering his options. Ultimately, the Attorney General’s office respected Adam’s decision and chose not to pursue an emergency order.
Alternatives to Guardianship
As National Developmental Disability Awareness Month comes to a close we need to keep in mind people across the country like “Adam” who are fighting to make their own decisions about how they live their lives – decisions about their living situations, their medical care, their work, and their social lives.
Too often, people assume that guardianship is the best way to protect a person with a disability whom they love or provide services for. However, people with intellectual and developmental disabilities will tell you that protection is not what they need. What’s needed is support in making their own decisions.
Guardianship is a status created by law that allows one person to make some or all decisions on behalf of another person. When the court appoints a guardian for someone, that person loses their legal independence and the right to have the final say in decisions affecting their life. It takes away a person’s most basic rights, including the right to make decisions about one’s own medical treatment, finances, and living arrangements. It may even take away the right to marry and have children. In addition, guardianship, which is created through legal proceedings, is usually more expensive and more permanent than other options. Less restrictive options that place the person with a disability at the center of their own decision making should be a first step before using a more drastic legal proceeding that may strip of a person of their freedom of choice and their rights.
There are many alternatives to guardianship that can preserve a person’s independence and allow them to participate more fully in making their own choices, practicing self-determination and participating in the community. Compared to guardianship, these alternatives are easier to change as needed, may be less expensive and allow individuals to make their own decisions whenever possible.
Appointing an alternative or representative payee, someone appointed to handle benefit payments on behalf of the recipient, can also provide support in keeping track of finances. If a person’s needs change, a power of attorney or medical power of attorney are also viable options that are less restrictive than guardianship. And sometimes a person may simply need a little extra support in one area. For example, automatic bill payment automatically pays recurring expenses from a person’s accounts, reducing or eliminating the need for ongoing assistance with paying bills on a monthly basis.
Supported decision-making is a process where individuals with an intellectual or developmental disability make their own choices and express their preferences with assistance. Supported decision-making happens when a family member or other designated person or people explain issues in a manner that the individual with a disability can understand—similar to what happened in Adam’s example. The individual with the disability is the decision maker with the right support and accommodations. Supports vary based on the needs of the person.
AIDD, and our network of Protection and Advocacy Agencies, Developmental Disabilities Councils, and University Centers for Excellence in Developmental Disabilities, are taking the lead from the community and exploring ways to expand supported decision-making and alternatives to guardianship to maximize the opportunity for people with intellectual disabilities to live independently and to exert control and choice in their own lives. We plan to help advance supported decision-making as a tool for facilitating the choices of the people we serve and empowering their rights.
We can all learn from Jenny Hatch, a young woman with Down Syndrome, who won the right to make her own choices with supports and accommodations. Jenny was placed under temporary guardianship against her will. She was moved into a group home and placed in a sheltered workshop, isolating her from friends and community. She successfully challenged the guardianship in court and now lives a fulfilling life with friends, a job, and a home of her choosing.
We need to change the approach from assigning someone to make decisions for the person with an intellectual or developmental disability to one that preserves the rights of people with disabilities and gives them support in making their own decisions when that’s needed. Together we can provide opportunities for others to follow the examples of “Adam” and Jenny to make their own life choices.
Guardianship should be viewed as a last resort. Supported decision-making is one alternative that allows people with intellectual and developmental disabilities to take control of their own lives. In the words of Jenny Hatch herself, “Just because people have a disability does not mean they need a guardianship. Many times they may just need a little help.”
As in Adam’s story, it is important to remember that, even if a person has a different way of communicating, he or she still has valid opinions about how he or she wants to live, and always has the most at stake in in any decision about their life. We need to take the time to ask questions and communicate with our loved ones to help determine what allows that person to thrive. With appropriate support, people with intellectual and developmental disabilities can maintain their independence and live dignified, productive lives.
*not his real name