Remembering Donald Roberts: Shared Decision-making for the Developmentally Disabled

Originally posted on March 1, 2016

Even though I’ve viewed it numerous times, every time I watch Remembering Donald Roberts I am deeply moved.

I don’t know much about Donald’s early years, but I know that when he was 19, Donald was institutionalized intermittently for “suicidal thoughts” at Stockton State Hospital. Donald’s art served as a way of expressing the pain and suffering he experienced during treatment at the state hospital.

“I am not mad at anyone not even my mom who put me in a state hospital to live when I was a young man in my twenties or maybe even younger,” Donald wrote in his blog. “I don’t regret my past and the people that took care of me, and the doctors that wanted me to live, and all the medications and treatment and shock therapy that they put me on, and also experimental drugs.”

Donald was one of the first disability rights activists to advocate for the California Memorial Project. The project’s mission was to honor and restore dignity to individuals with psychiatric and/or developmental disabilities who lived and died in state institutions without the respect they deserved.

Donald met the love of his life, Krisi through his work in the disability community. When the couple decided to get married, however, they learned that their disability income would be drastically impacted. They decided to celebrate with a marriage ceremony but never filed for a certificate.

When the couple realized Donald was having health issues, Krisi learned about the workbook Thinking Ahead: My Way, My Choice, My Life at the End from the California Department of Developmental Disabilities Consumer Advisory Committee and the Coalition for Compassionate Care of California. Thinking Ahead is an advance healthcare directive created by and for people with developmental disabilities. Advance directives are legal documents, and are a way to make your healthcare wishes known if you are unable to speak for yourself or prefer someone else to speak for you. It is recommended for adults of all abilities to have an advance directive in place after age 18.

Thinking Ahead enables people with developmental disabilities to advocate for themselves and stay in control of their lives through the very end. It is also a legal document in the state of California when it is signed by two witnesses and does not require a signature from an attorney.

Donald, however, never completed Thinking Ahead because he mistakenly believed the document required a lawyer’s signature.

I still remember the day I received the news that Donald had contracted a serious case of pneumonia and was in a coma. I was shocked and saddened that, Donald’s blood relatives, from whom he was now estranged, were excluding Krisi from conversations about the treatments he would receive.

Donald had told Krisi that when he died, he wanted to be buried in the Stockton Rural Cemetery where the remains of many institutionalized hospital patients were relocated, and he wanted a mariachi band to play at his funeral. His parents, however, did not want him buried there and felt that a mariachi band was inappropriate.

If Donald had completed the Thinking Ahead workbook, his final wishes would have been made clearer to his family. “I would have had something to show the family,” said Krisi, “and say, Hey, these are Donald’s wishes.”

My hope is that more families will work together to complete a Thinking Ahead workbook, and that the wishes of others will be honored in the future.

Thinking Ahead: My Way, My Choice, My Life at the End can be downloaded from the Coalition for Compassionate Care of California website where you can also find helpful instructional videos about how to complete the workbook.

“I don’t want to be known as a person with a disability that does art.” Donald said, “ I’d rather be known as just a person who does art.”

Please consider making a gift to the Coalition for Compassionate Care of California today to support the printing and mailing costs associated with distributing the Thinking Ahead workbook for anyone who requests a mailed copy. Thank you.

Judy Thomas, JD, is the CEO of the Coalition for Compassionate Care of California, and an attorney who has worked in healthcare for more than 20 years.

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